You think you don’t know anyone with Long Covid? You do. I promise you. It might even be you.

I don’t say that to be dramatic. I say it in an attempt to bring people back to reality. To yank them out of the denial bubble that has kept them safe and warm for the last six years.

We have to leave denial behind and be willing to face this problem head on, or we will never solve it.

Full disclosure, I first wrote this article for Long Covid Awareness Month in 2025. I had hoped by 2026 I wouldn’t need to do another one. I had hoped that we would have made progress in dealing with the airborne nature of Covid spread. I had hoped we would have better Long Covid treatments. I had hoped the denial bubble would be pierced.

Sadly hope is not a strategy and I find myself facing another year of Covid denialism. Another year of Long Covid patients being left by the wayside. Another year of solemnly watching as more people join the ranks of the disabled and chronically ill.

Another year of missed opportunities to change the course of the pandemic and save lives.

“I Don’t Know Anyone with Long Covid”

Yes. You do. Long Covid is not rare. It’s not limited to ‘only the vulnerable’. People of all ages, walks of life and health status are dealing with this debilitating condition. If you know more than a handful of people, odds are you know someone battling Long Covid.

There’s a myriad of reasons you may not realize you know someone with Long Covid. The most likely is that they’re choosing not to tell you. Long Covid, like many chronic illnesses, is invisible. You won’t know someone has it unless they choose to disclose it.

Disabilities carry stigma and as a result people often hide their suffering. They keep their illnesses to themselves, or only confide in a few close trusted friends. This stigma is amplified in the case of Long Covid because the condition has become highly politicized.

If you’re someone who believes you don’t know anyone with Long Covid, ask yourself this… are you the type of person who would be safe and understanding if someone shared their diagnosis with you? Are you open to learning and understanding more about it? Would you wear a mask if someone asked you to? Or do you walk around mocking people who are sick and accusing them of faking?

The answer might give you a clue as to why people aren’t sharing their health information with you.

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What Is Long Covid?

First things first, there are a lot of misconceptions about what Long Covid actually is. It’s still a relatively new condition, despite us being six years into the Covid pandemic.

In the lifespan of a novel virus, six years is not a very long time. We learn more about what this virus can do to the body every single day, but it may be many more years before we understand the true scope of long term implications.

We don’t even have a general agreed upon definition for Long Covid, and many healthcare workers fail to recognize and diagnose the condition.

I’m going to do my best to explain it the way I understand it, but will add a caveat that things are constantly changing. We may learn tomorrow that Long Covid is actually something different than what we understand it to be today.

This novelty, the fact that SARSCov2 is a new virus that we’ve never encountered before, is perhaps one of the best reasons we should all be taking precautions to avoid repeat infections.

We don’t yet know what will happen after 2, 5 or 10 infections. What we do know is not encouraging.

Long Covid is a chronic illness that develops after having a Covid infection. The initial infection is often defined as ‘mild’, and yet in the weeks and months that follow patients report a decline in their health.

They have fatigue, persistent infections, cardiac issues, new onset allergies, generalized pain, brain fog and more.

Many will be diagnosed with related comorbids like POTS/Dysautonomia, MCAS (Mast Cell Activation Syndrome) or ME/CFS.

There’s also mounting evidence of immune system dysregulation, which could lead to patients getting sick more often and with diseases we would normally only see in the immunocompromised.

For a more in-depth look at what Long Covid is, how it’s defined and diagnosed, I highly recommend ’s deep dive article below. Remember, the only way to avoid Long Covid is to avoid getting Covid in the first place.

The Gauntlet

What is Long COVID?

Like many people with Long COVID, I spend a good amount of time learning about my disease. I spend an additional large chunk of time educating friends, family, the audience of my newsletter, and even my own doctors about Long COVID…

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a year ago · 233 likes · 15 comments · Julia Doubleday

Novel Viruses and the HIV/AIDS Pandemic

As I mentioned above, six years is nothing in the lifespan of a brand new virus. The precautionary principle should be applied to protect our long term health, yet most people abandoned it years ago.

Some folks get upset at comparisons to the HIV/AIDS pandemic, but it was also a novel virus and it was years before we understood how deadly it was. I’m not comparing diseases, but their novelty and political response.

In the early days of the HIV/AIDS pandemic, the government did very little to protect people. Activists had to fight for years in order to receive proper healthcare, recognition, insurance and treatment. It was seen as a ‘gay disease’ and as a result, folks didn’t care that it was killing people.

In many ways we have a similar response with Long Covid because it’s seen as a condition only impacting the ‘vulnerable’. Those people who were probably going to die anyways. Not actively contributing to society. Not worth saving.

We’ve all heard “Your health is not my responsibility!” as a way of justifying not taking Covid precautions. Vulnerable people have been told to ‘stay home forever’. If someone dies, the first question that’s asked is ‘how many comorbids did they have?’

Society is collectively refusing to acknowledge that Long Covid can and does impact everyone. No one is safe. It just takes one infection to completely disable you, and you never know which infection will be the one where your luck runs out.

In the early days of the AIDS pandemic, no one knew that all cases of HIV would turn into AIDS and that AIDS would be 100% fatal (thankfully current treatments allow HIV+ patients to lead long healthy lives). It took nearly a decade for science to catch up to what was happening. For people to accept and understand that prevention was key. That HIV could infect anyone and wasn’t limited to a specific group of ‘others’.

Science moves faster these days, but we’re still only six years in to the Covid pandemic. I’m not saying I believe Long Covid will be fatal, I’m saying we have to be humble enough to admit that we don’t know everything yet, and we should be taking all available precautions to avoid infection.

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Could I Have Long Covid?

Yes, you could.

I’ve noticed a strange phenomenon going on in the world of chronic illness. People don’t WANT to be diagnosed. They ignore very real physical symptoms and tell themselves they’re ‘fine’. Or they actively seek out doctors who will tell them it’s anything other than Long Covid.

I’m reminded of a young woman who posted a TikTok video after being diagnosed with Functional Neurological Disorder (FND). She was thrilled to find out it wasn’t Long Covid.

This is in no way meant to downplay those dealing with FND or insinuate it’s not a serious medical condition, but rather to call attention to the depths of fear and denial surrounding Long Covid. In the past, most people wouldn’t want to have FND because it’s difficult to treat and carries a stigma.

Now we have people excited by the diagnosis, or ANY diagnosis, as long as it’s not Long Covid.

For those who aren’t aware, FND is often referred to as a conversion disorder. It’s not well understood, there are a lot of biases around the condition and therapy is generally the only available treatment. Many patients with serious physical conditions get worse because they were falsely labeled as having FND.

It’s not something you want to have in your chart unless your medical team are 100% certain they’ve ruled out all other causes for your symptoms, because once an FND diagnosis is made it becomes much harder to get physical ailments taken seriously.

Yet this woman was elated. She was relieved. She was celebrating her diagnosis and blissfully unaware of the challenges she would face down the road because of it.

Ask yourselves why that is? Why would someone be happy to receive a diagnosis that’s known to complicate medical care? Could it be that the stigma and fear associated with Long Covid is so severe that people are convinced having FND is better?

Or perhaps it’s because if you’re diagnosed with Long Covid you will feel pressure to adapt your behaviour. If the Covid virus is what destroyed your health, it becomes harder to deny the harm of repeat infections. You are forced to confront the fact that this is not a mild virus, that infections do not make you stronger, and that in order to avoid getting sicker you have to make behavioural changes.

People would rather go to therapy once a week and be told their condition is ‘all in their head’ than wear a mask or give up indoor dining. They would rather be sick all the time than modify their behaviour in any way.

We see this mirrored back to us whenever someone gets sick. They say it’s ‘not Covid’. It’s a flu. A bad bug. A virus. They admit they’re laid up in bed and feel terrible but quickly add ‘it’s definitely not Covid’.

They haven’t tested. They haven’t checked wastewater data. They haven’t considered the fact that odds are unlikely it’s anything other than Covid.

The kneejerk response from most of the population these days is to immediately say it’s ‘not Covid’ and then proceed to go about their lives as though nothing as changed.

Everything has changed. That’s the problem.

Folks are happy in their denial bubble. They want the comfortable lie. It keeps them warm at night knowing that they don’t have to change their behaviour and that those first few months of the pandemic were just a bad dream that is long over. They don’t want to go back.

The problem is, Covid doesn’t care what you want. It never has.

It doesn’t care that you think it’s over. It doesn’t care that you believe it’s not a threat because you’re ‘young and otherwise healthy.’ It doesn’t care about your political stripes, your vaccination status or your comorbids. It just wants hosts to infect. And we are giving it way too many opportunities.

If you’re still not convinced that you know someone with Long Covid, I encourage you to think about all the people who are complaining about being sick all the time. Lamenting how fatigued they are, or that they can’t taste and smell their food the way they did before.

The people who have heart disease, diabetes, blood clots and strokes in their twenties and thirties. The people being diagnosed with rare fungal infections, tuberculosis, whooping cough, RSV and other conditions at more frequent rates.

The people blaming all manner of health issues on ‘aging’ even though they’re under the age of 40. I see this all the time. People who are clearly experiencing chronic illness and yet refuse to see a doctor because they say they’re just ‘getting older.’

We are normalizing being sick, fatigued and in pain. People seem incapable of remembering that before Covid most of these symptoms would result in a trip to see a doctor. They wouldn’t be easily blamed on aging or menopause or ‘working too much’. We blame serious physical symptoms on these things so we don’t have to face the truth… it might be Long Covid.

We will even blame illnesses on lockdowns that ended five years ago. There’s no end to the wild and ridiculous rationale we will use to avoid considering that someone might have Long Covid.

Lastly, even for those who are willing to admit they might have Long Covid, there are significant barriers to diagnosis. Long Covid clinics are few and far between, and many refuse to implement masking policies so patients aren’t able to access them without risking reinfection.

Patients without insurance may not be able to afford a diagnosis. Those with an existing chronic illness, disability or mental health condition are likely to have their Long Covid blamed on their pre-existing condition or psychologized.

Misdiagnosis and gaslighting have always been common where complex and invisible chronic illnesses are concerned, but it’s particularly egregious with Long Covid. Getting diagnosed is an uphill battle.

All of this leads to a population of people who either don’t realize what they’re suffering from is Long Covid, can’t get diagnosed with Long Covid and/or don’t believe Long Covid even exists.

People are getting sicker and sicker, at increasingly younger ages, and we still can’t get them to take the elephant in the room seriously.

For more, check out this video by actor Matt McGorry on his ‘coming out’ as a person with Long Covid. He brings the receipts while explaining the stigma associated with the condition and why he took so long to admit he had it:

Pandemics and Trauma Responses

The pandemic was traumatic for everyone. Seemingly overnight people had their sense of safety ripped away. They watched as friends or loved ones died, businesses closed, healthcare became overwhelmed and millions became chronically ill.

Trauma is not an easy thing to deal with. Having to cope with the fact that there was this virus that could take your life at any time was rightfully frightening to people.

Unfortunately, instead of opting to adapt and put in place measures like clean air, better testing and masks in healthcare, most of society has opted for denial instead. This denial has in many ways broken us, because it’s providing a false sense of security.

People are moving through life as though the pandemic is over (even though the World Health Organization has been clear that it isn’t), but they’re getting sick more often. They’re missing more work. They’re forgetting things. They don’t ‘feel right’ anymore.

This cognitive disconnect is not only damaging, it’s dangerous. It leads people to continue to neglect the very real threat and thus risk their health over and over again. Many have decided that masks are useless political virtue signals, clean air isn’t necessary and Long Covid is fake. Even as they suffer from Long Covid themselves.

These false beliefs have only added to the tremendous stigma people with Long Covid face. All of them are easily debunked, but people cling to them because it allows them to go back to their 2019 version of ‘normal’. It gives them permission to pretend as though nothing has changed. To refuse to adapt.

It helps them feel superior to those with Long Covid and the Covid Cautious, writing both groups off as hypochondriacs and/or people who fear monger.

One thing is clear, people can and will do anything if it means they don’t have to endure discomfort or change their behaviour.

We’ve seen mask bans, reductions or eliminations in sick leave policy, increasing ableism and attacks on people with disabilities and the rise of anti-vaxx, anti-science people like RFK Jr.

Most people won’t even say the word Covid anymore, and few say Long Covid either. We blame people who are chronically ill. Tell them they need to ‘try harder’. We chastise those still masking, criticize clean air and Covid competent advocates and continue to bury our heads further and further in the sand. We refuse to face the problem.

As a result, we see more and more Long Covid. More deaths. More trauma. We’re stuck in a never ending cycle of death and loss that we won’t ever break out of until people start facing reality and adapting their behaviour.

How Can We Deal with Trauma and Support People with Long Covid?

First things first, you can wear a mask. Don’t ever underestimate the power of masking up to show solidarity with vulnerable people and those suffering Long Covid.

It’s a difficult thing to be masking in 2026. You’re facing a tremendous amount of peer pressure to pretend things are ‘normal’. You will likely lose friends. You will be judged. But hold steady. You’re in the right. People who are regular maskers have barely been sick over the last six years. That’s why they’re still doing it. It works.

By wearing a well fitted mask like an N95, you’re not only protecting your own health, you’re protecting the health of everyone around you. If you need help choosing a mask or want to learn more about respirators, check out my article below:

Other important steps you can take to curb the spread of Covid include ventilating and filtering indoor air, testing, staying home when sick and staying up to date on vaccinations. A layered strategy works best, and the more you can do to stop transmission, the better off those with Long Covid will be.

Next, help eliminate the stigma facing those with Long Covid and other invisible illnesses. Be a safe person that others can confide in so they don’t feel like they have to hide.

We need visibility to overcome the stigma associated with Long Covid, but we also need it to help the public realize this is not a small problem. It’s a disease impacting people all around the world, young and old, previously healthy and not.

I was chronically ill prior to Covid, and looking back I’m embarrassed by how long it took me to publicly admit I was disabled. The fear I had about sharing it is an indictment of how cruel people can be. Folks love to preach tolerance and acceptance, but few actually practice it in real life.

Then there’s the extra challenge of admitting you have Long Covid because it forces others to focus on a period in their lives they’re desperately trying to forget. It’s hard to cling to the denial narrative that Covid is ‘over’ or ‘mild’ if you’re face to face with someone who’s health has been destroyed by the virus.

I lost many friends and loved ones when they found out I was sick. Some losses were immediate and brutal, people who carelessly tossed me by the wayside because they instantly put me into the “less than” category.

Other losses were slower and more painful, because they involved false hope. They were the ones who stuck around at first, who applauded me for telling them the truth and offered help and support.

The ones who showed up and helped, until they stopped. Almost everyone stops eventually.

I wish more people would understand how quickly support disappears when you don’t “get better.” Even those who say they’re going to stick around eventually grow tired of the fact that you’re “always sick.” They grow bored of you. One by one they disappear.

If you’re also trying to get them to wear a mask? Reminding them that perhaps it’s not as ‘safe’ out in public as they’ve been led to believe? You’re going to find they disappear even faster.

It ends up being a lonely life, and our refusal to deal with the airborne spread of Covid has only made it even more isolating.

Even those lucky enough to have people stick by them have to constantly assess whether they might pose an infection risk. Whether they’re actually willing to mask, if they’re being honest about their own symptoms and health, or if they might bring Covid into the home and destroy whatever small baseline a person has left.

All these pitfalls and landmines take an incredible amount of energy, and its energy most of us simply don’t have to spare. It’s hard to fault someone for not admitting they have Long Covid when the admission could upend their world.

If you don’t tell others you’re disabled, you can at least TRY and pretend that everyone in your life will stand by you. That they aren’t ableists who view people like us as “less than”. If you tell them the truth you’re risking a tremendous amount of pain.

Once you’ve put that truth out there, once you’ve labelled it as Long Covid, you will find people stop calling. They stop visiting. They unfriend and unfollow. They do whatever they need to do to avoid facing the fact that the virus they believe to be ‘mild’ or ‘over’ has left someone they care about disabled.

They run from any reminder of the pandemic, and sadly those with Long Covid are one of the starkest reminders there is. As a result folks with Long Covid and related chronic illnesses slip away. Quietly disappeared from people’s lives. Ghosted, ignored and forgotten. As so eloquently put it, ‘we are made invisible’.

So the best thing you can do to support people with Long Covid is to make them visible. Help make everyone living with chronic illness visible. Help us find the courage to speak our truth and tell the world just how sick we really are.

Show us we don’t have to hide. We don’t have to plaster a smile on our faces and say we’re ‘fine’ when we’re anything but. We don’t have to play through the pain.

Recognize and accept that your desire to cosplay 2019 “normal” has caused many of us tremendous harm, and make a commitment to put aside the comfortable lie and start taking Covid seriously.

Lobby governments and public health for better treatments and mitigations. Help us fight for mandatory masking in healthcare settings. Demand more research into Long Covid treatments and cures. Wear a mask and stop the spread.

Keep us safe, help prevent new infections, and support us in becoming more visible. We don’t want to hide anymore.

In summary, to help support those with Long Covid and those trying to avoid getting Long Covid, here are some things you can do:

• Wear a mask, ideally an N95 or better

• Donate to or support your local mask bloc

• Give to mutual aid and help those with Long Covid access tests, masks, treatments and medical care

• Clean the air

• Avoid crowded indoor gatherings, open windows and ventilate spaces

• Wear masks in healthcare, especially if you’re a healthcare worker

• Stay home when you’re sick

• Engage with Long Covid organizations who are trying to spread the word about the debilitating nature of this virus

• Call your elected officials and tell them you want transparency with respect to Covid and Long Covid. Tell them to admit it’s airborne and fund mitigations, tests and treatments

• Admit to yourself that Covid is still here and still a threat. Once you realize the risk, you can begin to heal from the trauma and adapt to keep yourself and others safe

Some Covid and Long Covid related reads that I recommend:

• Everything That Friend Wants You To Know About Covid by

• Why Are People Wearing Masks in 2025? by

• Let Them Eat Old Vaccines and Plague by

• Why I’m Grateful to my Long Covid by

• Long Covid Life Update by

• Covid is a Time Machine by and Wendy Green

• Long Covid in Pictures by

• Covidlandia Begins Again January 2025 by

• What Would An Adequate Covid Response Look Like? by

I’m sure I’ve missed lots of posts and people, but the above are a great place to start! If you have a favourite article, writer or post about Covid or Long Covid, make sure to leave it in the comments so others can find it!

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Your ability to survive, thrive and alleviate suffering is largely dependent on the quality and care you receive.

It’s hard to be dependent on other people. It’s terrifying to lose your independence and autonomy. Help doesn’t magically arrive when you become disabled, nor are you given extra help when your condition declines.

You are on your own.

If you’re fortunate enough, you may have someone able to step up and provide care.

Caregiving is difficult. It’s often unpaid. It can be thankless, physically demanding and emotionally draining. It’s one of the most important roles a person can play in the life of someone living with disabilities, and yet caregivers are often not recognized for their work.

We must do more to recognize them. We must talk about their life saving role. We must demand better for people with disabilities. Better social supports. A living wage. A renewed focus on autonomy and allowing disabled people to remain in their homes and communities as long as possible.

Unfortunately we’re going in the wrong direction. With the rise of fascism we’re also seeing a rise in eugenics. They almost always go hand in hand.

People with disabilities are increasingly being left behind.

In the US, ICE has been targeting the disabled. Last week Congress heard testimony from Aliyah Rahman, a Minnesota woman who was violently dragged from her car by ICE agents despite clearly telling them she was disabled and on her way to a doctors appointment.

I’ve written at great length about Rodney Taylor, a disabled double amputee who’s been held in an ICE camp for over a year.

There’s also Alma Bowman, a disabled woman who was a whistleblower and helped expose ICE atrocities after the first Trump regime. They grabbed her again this past March.

These are just some of the disabled people who’ve been directly harmed by ICE. There’s countless more whose stories will never be told. There’s people being disabled in the camps every day, whether by disease, malnutrition or abuse. We almost never hear about them.

Which brings me to Wael Tarabishi, a 30 year old disabled man living with Pompe disease, a chronic and progressive neuromuscular disorder.

He was bed bound and dependent on a feeding tube and a tracheostomy to survive. His father, Maher Tarabishi, was his full time caregiver.

Wael couldn’t move without the assistance of his father. He couldn’t feed himself, take his own meds or change out the various medical tubes and devices keeping him alive.

His father did it all for him. Family and friends described Maher as being Wael’s arms, legs and lungs.

It might sound drastic, but that’s the reality for many severely disabled people. Caregivers are a literal extension of our bodies. Without them, we can’t survive. That was the case for Wael and his father… Maher was integral to Wael’s survival and his overall quality of life.

In October, ICE took Maher Tarabishi and threw him in a detention facility. Why? Because he overstayed a visa back in 1994. He didn’t commit any crimes. In fact, in 2008 the US government granted him permission to remain in the country to care for his disabled son.

In exchange for being allowed to remain in the US, Maher had to do yearly check ins with immigration authorities to renew his work papers. He had legal status and carried proof of his son’s disability, yet when he showed up for his check in, he was placed in handcuffs and arrested.

It’s entrapment. Maher did everything right. He was following the laws of the country. He was following the terms laid out for him to stay. He wasn’t hiding. He wasn’t ‘causing trouble’. He voluntarily showed up for a check in and found himself thrown in a camp and separated from his son.

Wael begged for his father to be released. He said he would die without him. Some people felt that was hyberbole. They felt that if it was ‘really that bad’ the family should have had a contingency plan.

Let me be perfectly clear… often there is no contingency plan. Being severely disabled is hard. It’s expensive. There’s little to no support. There is no ‘Plan B’. Disabled people die every day because they don’t have the support necessary to survive.

The government won’t provide it. Family and friends often abandon you when you become disabled. Private care is obscenely expensive and out of reach for most people.

That’s why Maher was critical to Wael’s survival. He had no one else.

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Wael gave interviews where he said he didn’t just lose a caregiver, he lost his best friend. He lost the person who made him feel safe.

Those of us living with severe chronic illness know how rare it is to feel safe. Our bodies betray us all the time. We never know what kind of suffering the next day will bring. Having someone who gives you a sense of safety, love and friendship means everything to us.

How dare ICE take that away from him. How dare they leave a disabled man alone to die. How dare they care so little about the lives of disabled individuals that they would detain someone knowing full well it would lead to the suffering and death of a US citizen.

They’re eugenicists. They didn’t care if Wael lived or died because they see disabled people as ‘useless eaters’. They see us as drains on the system. A problem to be ‘eliminated’.

Ripping away our caregivers is an efficient way to do this. It was a two for one deal. They detained an immigrant in order to hit their quota while also ensuring the death of a man they saw as worthless.

Remember, the Nazis did this too. They targeted disabled people. They coined the term ‘useless eaters’. They tested the gas chambers on us.

They knew the public wouldn’t rise up and fight back for disabled lives. They knew they could easily convince everyone that we were expendable.

We are not expendable. Wael was not expendable.

Wael died without ever seeing his father again. He didn’t get to say goodbye. He didn’t get to hold his hand or hug him. He spent the last month of his life in a hospital bed in the ICU, and it was completely preventable.

This should enrage you. This should radicalize you. This wasn’t just ICE causing an unnecessary death, this was ICE causing months of pain and suffering.

They cause pain and suffering in the camps.

They cause pain and suffering in the communities they terrorize.

They caused Wael’s pain and suffering.

After he died, his father begged to be allowed out of detention to attend the funeral. He begged for a chance to say goodbye. ICE denied it.

Once again, they chose to cause pain and suffering.

Imagine dedicating your entire life to providing for your sick child. Imagine learning to be their lungs, their arms and their legs. Imagine knowing that you are the one person who’s able to alleviate their suffering, and then imagine being ripped away from them.

Maher has to live with knowing Wael would still be here if he wasn’t rotting in a camp. He has to live with the knowledge that his child’s final days were spent in pain and alone.

It’s a huge burden for him to bear, and this heartless regime wouldn’t even let him out to say goodbye.

Something has to give. Something has to change. I guarantee there are countless more stories just like Wael’s that will never be told. People who slip away without anyone noticing. People who die at the hands of ICE.

Caregivers Are a Part of Us

I know it can be hard to understand just how important a caregiver is to a disabled person.

I know it’s hard to imagine that you might become so sick that you are 100% reliant on another individual to survive.

This is one of the realities about disability that many people are too scared to face.

They understand getting sick and getting better. They understand getting sick and dying. They struggle to comprehend getting sick, losing all your independence and remaining that way forever.

I want to help people understand. It’s one of the reasons I started The Disabled Ginger. I wanted to talk about the unique challenges facing disabled lives.

Years ago, I suddenly lost my own primary caregiver. It’s a story I haven’t told because I’m still not prepared to fully talk about it. It was traumatic and caused a significant reduction in my baseline. It was one of the scariest experiences I’ve had since becoming disabled.

I don’t want to be dependent on other people. I hate that I need a caregiver to be able to bathe, eat or have clean clothes.

I was once fiercely independent, and coming to terms with needing someone for the most basic activities of daily living was arguably the hardest part of accepting my new life as a disabled person.

For the longest time I resented my caregivers. I hated their presence in my home. In my carefully curated safe space that had been all mine for years. They made noise. They posed a risk of disease transmission. They sometimes had scents on them that hurt me.

They felt like an unwelcome intruder disrupting my peaceful daily routine and I loathed them for it.

It wasn’t until they were suddenly taken away that I realized my resentment was woefully misplaced. I didn’t resent the person, I resented my disease. I didn’t resent the help, I resented needing the help.

It’s human nature to want to be independent. To want to be in control of our lives. To want to be able to have our own space, our autonomy and peace and quiet. When you become disabled a lot of those things that others take for granted become things you have to sacrifice.

I had to give up two jobs I loved. I had to give up travel. I had to give up driving. I had to give up most foods because I became too allergic to eat them. I had to give up doing my own cooking and cleaning. I had to give up being a foodie, doing yoga and seeing my friends.

In short, I had to give up almost everything. Just as I was coming to terms with what I had lost, I became even sicker and started requiring full time support.

So I had to give up the only thing I had left… my autonomy and independence. I had to start relying on someone else to survive.

Of course I was resentful. Anyone would be. I hated everything about it. But it was either let people help me or slowly suffer and die.

Accepting outside assistance allowed me to realize how much suffering a good caregiver can prevent. How much they can improve your quality of life. How much of your survival is literally in their hands.

It was equal parts terrifying and enlightening. Terrifying because I suddenly realized I might actually die without their support. Enlightening because it helped me reach a place of acceptance and gratitude that had eluded me for years.

Then they were taken away.

Thankfully I had some wonderful friends and neighbours who stepped up to take care of me until my caregiver returned.

They cooked, they cleaned, they picked up my mail and took out my garbage and brought me to the hospital.

It took a village, but I survived it. Many are not so lucky.

It was just over three months that I was without my full time support, and in that time I suffered. I declined. I needed the hospital. I lost weight and I began to lose hope.

Even with the help of an entire community of people, I was starting to slip away.

That’s why caregivers are so important. Disabled people need help to survive and that help needs to be the right kind of help.

My caregiver was keeping me alive while allowing me to avoid unnecessary suffering and preserve as much of my dignity and autonomy as possible.

Maher did the same thing for Wael.

I survived losing my caregiver, Wael didn’t. I firmly believe had I been dependent on tubes and a tracheostomy like Wael was, I wouldn’t have survived either.

ICE shouldn’t be allowed to rip a caregiver away. They shouldn’t be allowed to detain a person necessary for another human being’s survival. They shouldn’t be permitted to cause that much suffering.

I don’t have all the answers, I wish I did. All I know is we must keep fighting for the people ICE is hurting. We must keep fighting for disabled lives. We must keep fighting for all marginalized individuals.

I’m inspired every day by the people who are out in the streets of Minnesota protesting ICE and trying to protect their immigrant friends and neighbours.

I’m inspired by the people creating robust networks of community care to deliver groceries and supplies to people who are too scared to leave their homes.

I’m inspired by the children imprisoned by ICE who are brave enough to write letters and draw pictures that document the atrocities they’re experiencing.

We can all make a difference. Our actions right now matter more than ever.

Tell your story. Speak up when you can. Document atrocities.

If you’re dependent on a caregiver, share what it’s like. Talk about what they do to keep you alive. Talk about Wael. His story deserves to be told and his father needs to know he’s got a community of support behind him.

The more united we are in the fight against tyranny, the stronger we become.

We will win in the end, but it starts with a commitment to protect everyone who can’t protect themselves.

Leave no one behind.

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We’ve likely all seen the video. Many of us have seen it from different angles and with different analysis.

Most people watched it and saw an angry man with a mask shoot a calm unarmed woman three times in the head. Many feel it was murder.

Except for Trump, Noem and MAGA. They have been defending the ICE agent since the shooting occurred. They’re blaming Renee. They’re saying she was a threat. That she should have complied. That she shouldn’t have been there.

Millions of people are watching the same video of a woman’s life being snuffed out and coming to wildly different conclusions.

It’s highlighting something which has been an issue in America for a number of years… people are living in different realities.

Everything has become team sports. Everything is left versus right, Republican versus Democrat. It’s one thing to make policy a partisan issue, but this was the senseless killing of a young wife and mother.

Once upon a time we would have all been angry about this. We would have agreed it shouldn’t become political. We would have all had compassion for Renee and anger at the ICE agent who killed her.

There are some things that should never be team sports.

More than enough people have weighed in on the video and why the ICE agent was in the wrong, so I’m not going to rehash that here.

I will say that my view is that she posed no threat and he did not have to shoot her, let alone shoot her three times.

If multiple men in masks with guns approached me in my vehicle, I would try to flee as well. I would be terrified. Especially considering Minnesota Speaker Melissa Hortman and her husband were murdered just a few months ago by a man pretending to be law enforcement.

But there’s another issue I want to discuss today, and it’s one that has been nagging at me ever since I saw the video.

Misogyny and ICE’s intense hatred of women played a role in Renee’s death.

Misogyny is killing women and driving draconian political decisions.

We’re going backwards in terms of women’s rights. We’ve already lost the right to abortion in many states. Birth control access has come under siege. Women have been arrested for miscarriages. There’s an increasing view among the right that women should be at home and serving their husband.

One need not look further than the huge following that Erika Kirk has created for herself in the aftermath of Charlie Kirk’s death. She’s built an entire brand out of misogyny. Out of telling women their place is in the home raising children. That their duty is to their husband, country and God.

These are all far right talking points that aim to demean and subjugate women. They want to make us less than. They want to take away our rights. They want to make us subservient to men.

What does that have to do with Renee Nicole Good’s killing? Everything.

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If you’ve watched the footage the regime released from the agent’s point of view, you can hear him calling her a “f*cking b*tch” right after shooting her.

What were Renee’s final words? “That’s ok dude, I’m not mad.”

She waved agents past her car. She tried to de-escalate the situation. Yet Jonathan Ross took out his cellphone and stalked her vehicle. He walked around filming her while another agent aggressively pulled on the door handle to try and force her out of the car.

When she became fearful for her life, she turned the steering wheel away from the agents in an attempt to get away. That’s when Ross shot and killed her.

Anyone who’s been the victim of domestic violence knows what ‘f*cking b*tch’ means. We’ve all heard it after being hit, assaulted or demeaned.

It’s a misogynistic slur and it’s not a normal or proportionate reaction to what Renee and her spouse were doing.

She was shot and mortally wounded. Her car was careening away because she had lost consciousness. Why did the agent feel the need to debase her further?

Because he hates women. I genuinely believe that’s the most likely explanation. It would also explain why ICE refused to let an on scene doctor check her pulse or help provide aid. She was barely human to them. They didn’t care if she lived or died.

He wasn’t afraid for his life. He didn’t think he was in danger. He shot her because she wasn’t afraid. He took her life because he was angry that she didn’t cower in his presence. Didn’t show him the deference he felt he deserved. Didn’t seek his approval or his attention.

Misogyny. Bigotry. Unbridled Rage. These are the types of men that DHS is giving unchecked power to. Men who can’t control themselves. Men who purposefully sought out a job that would give them anonymity while allowing them to exercise their bigotry over anyone they want.

He took Renee’s life. A spouse is now a widow. A child has lost his Mom. And what’s happening to the ICE agent?

He’s being defended by the Right. He’s raised over $100k on GoFundMe. Billionaire William Ackman has personally donated ten thousand dollars.

He’s profiting off a killing.

Lest you think this is a one-off, consider the things we’ve heard about Renee since the shooting:

She should have been taking care of her child.

She should have been at home with her family.

She shouldn’t have prioritized the lives of criminals over her son.

She shouldn’t have agitated the officers.

She should have complied.

She shouldn’t have smiled.

She should have gotten out of the car.

She should have moved.

Her wife shouldn’t have mocked the officer.

Her wife shouldn’t have a gofundme

And lastly, FAFO. Yes that’s right, people are saying ‘f*ck around and find out’ in response to a woman being murdered by ICE while sitting in her car.

What aren’t we hearing?

He shouldn’t have shot her.

He should be arrested and charged.

He shouldn’t have impeded EMS and a doctor from assisting her.

He shouldn’t have called her a “f*cking b*tch”

Lastly, Trump defended the officer’s actions by saying the women were ‘very disrespectful’ towards law enforcement and that agents ‘shouldn’t have to put up with that.’

Apparently two women saying things an agent doesn’t like now counts as ‘disrespect’ and warrants a bullet to the head.

It’s no surprise considering Trump is credibly accused of sexual assault by multiple women and has recently called female reporters ‘piggy’ and ‘ugly inside and out’… but it’s still wrong. It’s despicable. He should be condemning this murder in the strongest sense of the word. He should be pulling ICE out of Minnesota. He should be mourning the senseless death of a US citizen, not blaming her.

It hurts to see this play out so publicly, but if we’re honest with ourselves, it’s not at all surprising. This is the patriarchy. This is the result of misogyny being tolerated and even rewarded within society.

“She should have just complied” is no different than “she shouldn’t have worn that short skirt”. It’s the classic rape culture defence repackaged and repurposed to justify murder, and we must all speak out against it.

I hate that this needs to be said but women are not to be blamed for the bad actions of men. We’ve been blamed for long enough.

It’s not our fault when we’re beaten, raped and assaulted. It’s not our fault when we’re murdered. Even if you don’t like what we’re saying or doing, that doesn’t give you the right to harm us and call us b*tches.

I want to believe that Jonathan Ross will be investigated and charged for what he did, but I have very little faith that will happen.

Our system protects predators. We’ve seen it with Trump. We’ve seen it with various rapists who get off with barely a slap on the wrist. We’ve seen it with virtually everyone involved in The Epstein files.

Victims are slandered, blamed and have their lives torn apart. The predators are rewarded.

My hope is that people recognize that this killing was misogynistic in nature. This wasn’t about immigration. It wasn’t about law enforcement. It wasn’t about stopping a threat.

It was a man lashing out and taking a life.

The only difference between what happened to Renee and what happens to millions of women around the world every year is that it was caught on video and played for the whole world to see.

If this is what they’re willing to do to a white woman in broad daylight and on camera, imagine what’s happening to the thousands of women being held in detention facilities and private prisons. Or the women trapped in abusive relationships with these men. Imagine what happens away from prying eyes.

The fact that she was killed by an ICE agent operating in an official capacity and that we’ve all seen (and heard) what he did means we have an opportunity to use this moment to fight for real and lasting change.

I hope that this will get people to see the dangers of misogyny and start calling it out more often. Start holding predators and abusers accountable. Start demanding change.

I also hope this will be the catalyst to abolish ICE. We can’t continue to allow masked men to kidnap, torture and kill people with zero accountability.

There was a record number of deaths in ICE custody in 2025. Two citizens have been killed. Renee Nicole Good and Keith Porter, a Black man in Los Angeles who was killed on New Year’s Eve by an off duty ICE agent.

His killing was not caught on video and his death has not received the same amount of attention… but it must be recognized. We must stop the cycle of death and destruction.

Where do we go from here? I’m not sure. I think we hold the line. I think we continue to document atrocities and encourage others to do the same. I think we refuse to cower in fear.

Abuse thrives in darkness. It counts on victims being too scared to speak up. This regime is trying to scare people into compliance. The show of force in Minnesota is a perfect example of that.

There’s a reason these ICE ‘arrests’ are almost always accompanied by a videographer. They’re creating torture porn to scare the general population.

We must refuse to be scared. We must keep trying to protect one another. We must bear witness and document everything they’re doing.

Make no mistake, the brave men and women who filmed the ICE agent who killed Renee Nicole Good may very well have saved lives. It’s a tragedy they couldn’t save hers, but if their actions result in removing Jonathan Ross from the street, they will have saved lives.

If their actions result in more accountability for ICE, they will have saved lives.

If their actions result in people voting out Republicans at the polls, they will have saved lives.

Don’t despair. Don’t give up. Keep documenting everything. The truth will out and I have to believe we will be victorious in the end.

Finally, never forget that we all know the difference between right and wrong. The fascists in charge want you to forget that. They want you to ignore what you’re seeing and hearing with your own eyes and ears.

Regardless of where you fall on the political spectrum, you know in your gut that killing Renee was wrong.

You know that defending the ICE agent is wrong.

You know that the escalation in Minnesota is wrong.

As long as we hold tight to our moral compass, as long as we keep speaking up for what is good and true and right, we can’t be defeated.

All it takes for evil to triumph is for good people to remain silent, so don’t remain silent.

The fundraiser for Renee has been closed as they’ve hit their goal, but I’m going to link to it so you can read her family’s words: https://www.gofundme.com/f/support-for-renee-goods-wife-and-son

You can also consider donating to Keith Porter’s gofundme as his family need help and support through this difficult time as well: https://www.gofundme.com/f/support-for-franceolas-granddaughters-future

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We would watch holiday movies together, and Christmas songs were all that played in our household from December 1st onward. I looked forward to decorating the Christmas tree the way a kid looks forward to going to a candy shop. We would haul out the boxes of ornaments from the basement and reminisce about the meaning behind each one. We would sing songs together and have hot chocolate. We would eagerly anticipate the first gifts being put under the tree and start frantically guessing at what they could be.

When I was 18, my Mom was diagnosed with pancreatic cancer. She went in for an attempted whipple in December, a surgery that was her only shot at survival. It was unsuccessful and she received a terminal diagnosis. She was given between 3-12 months to live and had to remain in hospital until two days before Christmas. When she arrived home she was still sick and in pain, and we had to grapple with the reality that this would likely be her last holiday season.

In a way, that was my first chronic illness Christmas. Only it wasn’t me who was chronically ill.

My Mom had always been the one to spearhead our traditions, and that year she was barely able to get out of bed. She certainly couldn’t go out and buy and wrap presents or decorate our Christmas tree.

That was the year I became an adult. I was already 18, but had lived a relatively sheltered life up until that point. Watching my Mom suffer and knowing that she was upset to miss out on the Christmas traditions broke me emotionally. It was so unfair. Why was this happening to us? Why was she so sick on her last Christmas?

I didn’t have any of the answers, just like I can’t answer why I’m so sick now. What I could do was attempt to bring her as much joy as possible. I could embrace the traditions that meant so much to her and find a way to make them accessible.

I spent every penny I had saved over years of part time jobs on Christmas presents. I made sure we each had a special ornament to open on Christmas Eve and new pajamas. I hid presents in my car and brought them inside in the middle of the night so no one would know what I was doing.

I played Santa and ‘Mom’ that year, and on Christmas morning I made sure our tree and stockings were as full as they had been in the past. I got up early to put Christmas music on and eagerly waited for everyone else to wake up. I even went grocery shopping to make sure we had our regular snacks and holiday drinks.

I was exhausted, but seeing the joy on my Mom’s face Christmas morning was worth it. We had a beautiful last Christmas together, and later that night she told me that for a brief moment she actually wondered if maybe ‘Santa was real.’ Losing her was one of the most painful experiences in my life, but the memory of our last Christmas and the joy I was able to bring her has brought me tremendous comfort.

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Holding Onto Holiday Traditions

In the years after her passing, I tried to hold on to the various traditions I had grown up with. I kept buying myself and my younger sister our annual holiday ornaments, I made sure I always put up my tree on December 1st and I would eat all the same snacks that had become Christmas staples in our home.

It was my little way of honouring the memory of my Mom and finding joy during the holidays without her.

I would even go to the mall where she used to take us to see Santa as children - and walk around listening to the Christmas music and enjoying being in a place that reminded me of her.

As I got sicker - this became harder to do. My financial situation was strained, my physical health worsened, and suddenly keeping up traditions was nearly impossible.

One by one they fell away. I could no longer go walk around the mall. I became allergic to all of the holiday goodies I used to enjoy. I couldn’t afford a Christmas tree so there was little sense in continuing to buy ornaments. I was often alone at the holidays with no gifts to open - and I couldn’t afford to buy presents for others. I spent more than one Christmas in the hospital - which is not the most joyful way to spend a holiday. They became a bleak and lonely time.

Chronic Illness, Holiday Guilt and Gaslighting

I realized that if I was going to be sick at the holidays, if I was destined to spend most of my Christmases alone and/or in the hospital, I would need to develop my own unique ways of finding joy. I would need to accept that Christmas would look much different going forward.

It was not an easy thing to do. Holidays are one of the hardest times to be chronically ill because there’s intense pressure to socialize and participate in various family and friend events.

For many of us, forcing ourselves to participate for the benefit of others leaves us exhausted and can impact our baseline. It robs us of our ability to enjoy the holidays. Unfortunately most non disabled people are unable to understand this and will push us to be involved in every holiday event and tradition.

Have you ever tried to say ‘No’ only to have people scoff and ask you if you don’t care about them and/or Christmas? Or tell you that you just need to ‘try a bit harder’ to get involved? We’ve all been there, and it’s incredibly painful.

What non disabled people don’t understand is that we feel tremendous guilt over being unable to participate. We miss our holiday traditions too. But no matter how much we miss them, the reality of what our bodies are capable of doing doesn’t change.

I missed spending Christmas with family, but that didn’t mean the hospital was going to discharge me and let me drive home after a medical emergency. I missed going out with friends and partying at the holidays, but that didn’t mean I was suddenly going to overcome my severe allergy to alcohol. I missed having a Christmas tree, but that didn’t mean a money tree grew in my backyard to help me afford Christmas decorations while trying to survive on disability.

We miss our old lives just as much as you do, in fact we miss them more. We know you’re unhappy we can’t do what we used to do, but no amount of wishing things were different will change our reality and we need you to help us accept and adapt. We need you to meet us where we’re at and provide love and support, especially at the holidays.

Almost every holiday after becoming sick was marred with guilt and self gaslighting. I dreaded December because I knew I would be faced with invitations that I would have to decline. I was embarrassed I couldn’t afford gifts for people and sad that my health meant I would need to spend Christmas alone. The guilt was always the hardest part.

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Overcoming Guilt and Setting Holiday Boundaries

First things first, the holiday season can be exhausting even for the non disabled. Travel, visiting with countless people, frantic shopping, cooking and cleaning up after big meals, house guests etc. By the time it’s all said and done most people simply want a long Christmas nap!

If you’re dealing with chronic illness, this fatigue will be magnified tenfold. It’s not reasonable to expect your body to keep up with others during the holidays, and anyone who tells you otherwise doesn’t understand the realities of living with an energy limiting condition.

People who love you should want to find accessible ways to include you. They should be more than happy to listen to your feedback and tweak celebrations so that you can join in a safe and healthy manner.

If they’re unwilling to do this, if they gaslight and guilt you because they want it to be exactly like the holidays before you got sick, you are under no obligation to see them.

No one is going to protect your baseline the way you will. No one else has to live with the consequences of a setback. No one knows how it feels to be inside your body, coping with constant pain and fatigue. So no one has the right to tell you what you can and can’t do.

What often happens is that family and friends are upset that their holidays are going to look different. That they’re going to have a reminder of chronic illness and disability. They see this as impacting their joy.

This has only intensified since the beginning of the Covid pandemic, because now more than ever people do not want any reminders of the frailty of the human condition or the randomness of life. They don’t want to think that they too could be left disabled.

So they expect you to hide your sickness. They expect you to ‘perform’ the same way you did before you became ill. They want the ‘old you’ because the ‘new you’ challenges their carefully crafted bubble of denial.

This is not your problem.

It can be hard to move past the guilt and the gaslighting, but for the sake of your health it’s something you need to try and do. Please read this again and again as much as you need to:

“The people who can’t accept your chronic illness, who can’t accept the fact that you’re disabled, have a problem with internalized ableism. They will undoubtedly try to make their problem your problem by expecting you to pretend to be well. You do not have to do this for them. It is NOT your problem. You are just as worthy of joy and happiness at the holidays as everyone else and you do not have to stand for anyone insinuating your health is impacting THEIR joy.”

If you’re struggling to set boundaries, ask yourself the following question: “Will this person be there for me if I get worse? Have they been there for me in the past?” The answer will often be ‘No’ and that realization makes it much easier to stand firm in your choices and hold your boundaries.

Lastly, don’t be hard on yourself if you give in to the guilt. Especially during your first chronically ill Christmas. The pressure from others to pretend away one’s illness is intense, and boundary setting is a difficult skill. It takes time to learn how to do it.

Give yourself grace and know that whatever you’re doing is more than good enough. You’re coping with something incredibly difficult that few people outside of the disability community can ever understand. If you make a choice that sets you back - it’s ok. Forgive yourself, reach out for support and next time you might be able to choose differently.

If you have a chronically ill person in your life who seems hesitant about joining in on the holiday celebrations, please remember that it’s not because they don’t want to see you. They’re not being lazy, antisocial or a ‘Scrooge.’ They’re scared that they will get sicker. They’re exhausted and for many of us the holidays represent a rare opportunity to catch up on rest and quiet that we struggle to get all year. We can’t always participate the way you want but it doesn’t mean we love you any less. It’s genuinely not about you.

Establishing New Traditions

We’ve dealt with the guilt and the gaslighting that can come with being chronically ill at Christmas, what comes next? Often you will find yourself spending a holiday alone or having a much quieter Christmas than what you were used to in the before times.

You may have to let traditions go because you can no longer safely do them.

This letting go process can be painful, we often underestimate how much these traditions meant to us. But the letting go can provide a unique opportunity to create new traditions. To find ways of enjoying the holiday as a disabled person. To experience rest and relaxation instead of chaos and consumerism.

The easiest way to do this is to meet yourself where you’re at. When my illnesses were more moderate - these were some of the things I would do:

• “Christmas at theMovies”. My friends and I who couldn’t travel to see family would go see a movie on Christmas Day

• Christmas Playlists. I compiled playlists of all my favourite tunes and played them starting December 1st… I ‘wham’ myself every year and I always love it

• If you can’t get a real tree because of the physicality needed to lug it in and out of your home (not to mention cleaning up pine needles) you can get a fake tree and/or a small table top tree

• Watch Christmas movies. I have a whole list of movies and I always end with my Mom’s favourite as a way of honouring her memory (National Lampoon’s Christmas Vacation)

• Give back where you can. This is a big one. Being of service to others helps us be more grateful for what we have. It can be one of the easiest ways to inject some joy into your life. When I was in a more secure financial position I would donate to local food banks, give gifts to the children’s hospital and surprise friends and coworkers with thoughtful cards

When I became more severe I lost a lot of these traditions. I can no longer leave my home and I’m stuck in bed most of the time. I’m not in the financial position to help people or give gifts the way I used to. I have to try and find joy and traditions in the smallest of things now:

• There’s a homeless person who lives in a tent across the street from my building. I can’t get outside to talk to him or help him - but I see him every night when I’m laying in my warm bed. I send him hot meals via Uber… it’s not much… but it’s what I can do

• I have a Charlie Brown Christmas tree… it’s just a coatrack wrapped in Christmas lights. It’s not much but it brings me joy. I placed it beside my tv so I can enjoy the lights while I watch Christmas movies

• Leverage technology. Since I can’t celebrate with people in person - I make it a point to set up as many Zoom calls as I can and I join in the celebrations that way

• Connect with people on social media. Many of those who are severely ill will spend their holidays alone. That doesn’t mean they have to be lonely. Social media gives us a way to be ‘alone together’… and I cherish the conversations I have with others at the holidays

What Can You Do for the Chronically Ill Person in Your Life?

We’ve gone over the various ways to make the holidays easier if living with chronic illness, but what about if someone you love is disabled and you want to learn how to better support them? I’ve got you covered, there are many things you can do to make our holiday season a bit brighter:

• Keep things guilt free. Make sure they know they’re welcome but that if they can’t make it or have to leave early you will understand

• Relieve them of financial obligations to bring presents. Unless they’re one of the few chronically ill people able to work and/or fortunate enough to live above the poverty line - odds are good they are declining invitations due to financial stress. Let them know their company is enough

• Let them know they can “come as they are.” My illnesses cause a lot of pain and swelling - tight clothing is uncomfortable. I declined many an invitation because it was fancy dress and I can’t be comfortable in anything but sweat pants

• If they have dietary restrictions - respect them and find a way to include them. Before my illnesses became severe I was a vegan and often would be left with a plain baked potato or squash at holiday dinners. People couldn’t/wouldn’t avoid using dairy which eliminated most side dishes - and I didn’t eat turkey. I was often teased for this which made me less likely to want to attend

• One of the best Christmas dinners I ever had was at the home of a friend from the theatre who not only made a separate vegan meal for me - they ensured it had adequate protein (not always an easy thing to do!). They made it clear to the guests that I was not to be teased for my choices - and many people ended up trying the vegan dish

• Many chronically ill people can’t drink alcohol. Whether that’s because they have MCAS and are allergic (like me!) or other reasons - don’t demand to know why. Don’t ask if they’re pregnant or tease them for being sober. If possible, have a fun virgin cocktail they can drink so that they don’t feel left out

• If giving gifts, consider whether or not they’re practical. We aren’t being ungrateful - but many of us can’t use a lot of the traditional gifts people give. I would often get products I was allergic to, gift cards for food or booze I wasn’t able to eat or clothing I would never be able to wear. I can’t speak for all chronically ill people - but a gift card for groceries or pharmacies and/or practical supplies like first aid or household goods would have meant the world to me. When you’re on a fixed income you often spend more than you have on stuff that isn’t fun to buy (like toilet paper, medications, gas etc). When someone gifts you these items it frees up your budget to be able to do something we’re almost never able to do …. Treat ourselves.

Final Thoughts for Anyone Struggling this Holiday Season

Remember that you’re not alone. If you’re feeling lonely or spending the holidays alone - I want to assure you there are many of us out there in the same boat. I like to think that we are ‘alone together.’

Reach out on social media, leave comments on this post, text or call a friend. Any way that you can connect to someone else can help remind you that even if you’re on your own, you’re never alone.

The longer you deal with chronic illness and disability, the more people will disappear from your life. I desperately wish this wasn’t true, but after years of being sick I’ve seen it time and time again. People leave you behind. They have their own timeline for you to ‘get better’… when you don’t … many leave.

With each Christmas that’s passed since I became severe, I find myself receiving less holiday cards, texts, calls and emails. I’m painfully aware that most people have forgotten me. Erased me from their lives because they don’t want to face the realities of living with severe chronic illness. They think people like me impede their ‘joy’ - so they disappear.

I know how painful it is but never forget that you are valued and loved just as you are. We deserve better than those who will judge us or cast us aside just for being sick. They don’t realize how easily they could end up in the exact same situation, and if/when that happens we will be there for them the way they weren’t there for us.

I will leave you with a line from one of my favourite Christmas movies, The Holiday. If you haven’t seen it I highly recommend it for no other reason than it encourages us all to have ‘gumption’.

Now more than ever we need to stand strong in our convictions, hold our boundaries and push back against those who fail to treat us with the respect we both need and deserve. That is gumption, and my wish for all of us in 2026 is that we find it wherever and whenever we can and start changing the world for the better.

“I don't know, but I think what I've got is something slightly resembling... GUMPTION”

Happy Holidays from my heart to yours, and thank you to everyone who’s taken the time to subscribe, like, comment and support me through this wild journey to get The Disabled Ginger out into the world. It’s hard to believe next year will be two years of writing this newsletter, and I can’t wait to see what comes next.

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Why? I got hit with a massive flare that I didn’t see coming. I wasn’t prepared for it, and couldn’t quite cope.

Such is the nature of chronic illness. We often know the types of things that cause flares. We learn how to pace ourselves. We understand our limitations and how to work within them to minimize damage.

But it’s not always enough. There can (and will) be flare ups that are outside of our control. That happen despite our best efforts and end up dragging on far longer than we could possibly imagine.

That was what happened to me in September, and I’m still battling the effects of it today.

It started with my microwave breaking down. I know, it’s “just” a microwave right? Unfortunately when you’re chronically ill, things breaking down can have a much larger impact on your baseline.

Why? A multitude of reasons. I’m housebound so I can’t go to the store and replace something if it breaks. I have to order online and coordinate someone to help with delivery. It’s not a ‘simple’ solution.

In the case of the microwave, it happens to be one of my accessibility tools. As I explained in a Note that I shared at the time, I’m no longer able to safely cook using the stove or the oven. I do everything in the microwave.

When people assist me with cooking they freeze individually sized portions of safe food for me and I reheat when I’m strong enough to eat.

Without the microwave, I had no food. My MCAS is so severe I can’t order takeout, and I can’t tolerate any prepackaged meals or anything with preservatives. In short, I was stuck.

I find that non disabled people can’t possibly comprehend this. They assume that we must be exaggerating. That we’re looking for pity or perhaps just unable to come up with reasonable alternatives.

The truth is disabled people are excellent at contingency planning and finding creative solutions. We spend our whole lives adapting to survive. If we say there’s no easy solution, there really is no easy solution.

We have back ups for our back ups. We try and plan for every possible catastrophe because we know how much a setback can harm our baseline. But you can’t plan for everything.

When you lose your health, a degree of resilience goes with it. That is not our fault, it’s just the nature of chronic illness.

I couldn’t plan for my microwave to break, nor could I possibly fathom that event would kick off five weeks of declining health and flares that were worse than I had seen in years.

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When One Domino Falls…

More tend to fall with it. First it was the microwave. Thankfully I had someone loan me a spare so that I only had to go three days without food. But the spare didn’t seem to be working right. I noticed that I felt ‘off’ whenever it was running. I would get flushed and was developing hives on my arms and face. My body didn’t want to accept the food that I cooked in it.

Sure enough, there was something wrong with it and it shorted out a few days later.

Now I was back to square one with no microwave, no ability to cook food and two broken appliances cluttering up my very teeny apartment.

I was starving, cranky and growing weaker by the day. Thankfully a kind person offered to buy me a new one, and another person picked it up and brought it to my apartment for me.

Without these acts of of kindness, I would probably still be laying in bed wondering how or when I was ever going to eat again.

That is the reality of severe chronic illness. You are devastatingly dependent on others for basic activities of daily living and survival.

Once the microwave was set up, I truly believed I was going to start to recover.

The universe had other plans.

My HVAC broke next. I can’t go without air conditioning because of my heart issues, so I had to vacate my apartment.

I’m practically bedbound, so going anywhere is a huge production. Just leaving my house results in a multi-day setback. Having to leave for multiple days and stay somewhere unfamiliar? It can wreck me.

Thankfully another friend was willing to put me up, but the change in environment caused a massive mast cell reaction. It was so severe I didn’t even realize what was happening to my body until I was in full blown anaphylaxis.

By then it was too late. The damage was done.

I went home as soon as I was physically able, only to find that my washing machine had also broken.

When you’re living with MCAS, you have to wash your belongings a lot. Any dust, scents or triggers on clothes can cause serious health issues. Bedding, towels and rugs need to be constantly laundered. It’s exhausting but necessary.

Unfortunately the machine ruined a large number of my clothes and textiles before I realized there was a problem, and it left me with nothing clean or safe to wear. It also meant I couldn’t wash any of the items I took to my friends house, and they were covered in allergens and needed to be thrown out.

That was the moment that my body basically shut down.

Between the physical and emotional exhaustion, the mounting financial pressures and the unrelenting allergy attacks… it simply gave up.

I don’t have the strength to hand wash clothes. I can’t use a laundromat or dry cleaners because of how severe my sensitivities are. Even new machines can be a risk because they off gas VOCs.

Nothing is simple or straight forward and all my careful contingency planning and flare survival tips were no match for the crushing weight of things going wrong all at once.

That’s why I disappeared. It was too much for my body or my brain to handle. I crashed into bed and didn’t emerge for days. When I was able to be conscious, I spent all my spare energy trying to solution the problem.

Trying to find a way to wash my clothes, replace my ruined items and line up doctors appointments to address the severity of the setback.

It was one step forward and three giant leaps back for weeks.

The brain fog became so bad that I couldn’t even manage a short 140 character post, and losing my ability to write was heartbreaking.

Writing keeps me going. It gives me a reason to get out of bed each morning. It gives me a purpose. It gives me connection and community. My illnesses have taken so much from me but until now, they had never taken my ability to write.

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What If This Flare Never Ends?

That’s when the ‘what ifs’ set in. The fear that this was going to be my new normal started to encompass every waking moment. I found myself sobbing because I was utterly convinced I had lost my ability to write for good.

I was sure that this was my new ‘normal’, and that it wasn’t a life I was willing or able to accept for myself.

We’ve all been there. The ‘what ifs’ are a natural response to a severe setback. We’ve all lost our baseline and had to cope with the fear that it wasn’t going to come back.

That fear is not helpful. It’s draining. The ‘what ifs’ steal our energy and don’t help us heal any faster.

The sad reality is that life with chronic illness is wildly unpredictable. You can never know when a flare will happen, how long it will last or how severe it’ll be.

You can plan for them, you can prepare and build contingencies, but at the end of the day your body is in control.

You can’t push through it. You can’t play through the pain. You can’t ‘try harder’ and force the flare to end sooner than it would otherwise.

It has its own timetable, and the best thing you can do is take a deep breath, lean in and accept it. You can stop fighting the inevitable.

I don’t know exactly when I reached the point. I honestly don’t even know how I got there. But eventually I stopped resisting and gave into the flare.

I finally got to a point of acceptance. I dropped the what ifs. I stopped trying to write. I stopped checking my bank balance and panicking about how I was going to pay for everything. I stopped berating myself for not recognizing the issue with the washing machine sooner. I stopped wondering what I would do if this flare become my new baseline.

I stopped everything and I rested.

That’s what my body needed to heal.

It wasn’t easy. Resting when everything is falling apart around you is a herculean task. But it’s a necessary one.

We must find ways to stop spinning and quiet our minds. We must remember that no amount of stressing or planning will change what’s going to happen to our bodies.

If the flare was going to become my new baseline, worrying about it wasn’t going to change that. It would happen whether I worried or not and I would have to cross that bridge when I got there.

Recognizing this can be freeing and frustrating all at the same time.

Its freeing because it helps give us permission to stop the endless cycle of ‘what ifs’ and actually rest. It’s frustrating because no one likes giving up control. No one wants to face the reality that we can lose our baselines at any moment. We can become more disabled in an instant. We can lose function and not gain it back.

Unfortunately, that is reality. There are a great many things we can do to protect our baselines, but we can’t control everything. We can’t plan for every setback. We can’t change fate.

Sometimes things will happen that rob us of our baselines. Sometimes they will be permanent, but more often than not they won’t be.

If we learn to accept the setbacks when they occur and lean into rest, we increase the odds that we will come through the flare unscathed.

If we give ourselves permission to stop worrying and ride out the pain, we may actually find some peace and comfort.

How Can We Do This?

I wish I could give you a step by step guide to eliminating the ‘what ifs’ and giving in to radical rest.

I wish someone would give me a guide, because it’s not an easy thing to do.

Unfortunately no one can really tell us how to do it, it’s something we must figure out on our own.

I did write an article on radical rest where I shared some of the things that have worked well for me, you can read it below:

The best advice I can give is to be kind with yourself. Treat yourself the way you would treat a friend or loved one who’s struggling.

All too often we are much harder on ourselves than we are on others. We cling to the need to control everything, and the harder we cling the worse we get.

Let go. Breathe deep. Remember that absolutely nothing in this world is permanent. Not the good days and not the bad days. Suffering ends. Pain ends. Pleasure ends. Every moment is fleeting and nothing will last forever.

It’s funny, but I find we remember the bad days more than we remember the good ones. We ruminate on our flares more than our successes. Personally I’ve noticed that when I have a bad day I automatically worry it’s going to last forever. When I have a good day? I never worry it will last forever.

I never ruminate on the positives, only the negatives. It’s hard for me to admit that, but I’m hoping it helps others as I bet many of you are the same way.

When was the last time you had a relatively good day and thought “I wonder if this will be my new normal?”

When was the last time you had a flare up and worried it would be your new normal?

Human nature is such that we worry about the bad things and tend not to focus on the good… so I’m challenging all of us to focus on the good things. Try and remember that good days will come again. That there will be times where the suffering eases. That things will ebb and flow as they always have and the bad days will not last forever.

Even if your flare is permanent, even if your baseline is forever changed, I promise there will still be moments of light.

There will still be joy. There will still be good days. There will still be reasons to smile.

They may become harder to find, but they will still be there.

Hold on to that. Always.

And if someone in your life is struggling through a lengthy flare like I was? Offer to hold on to hope for them too. Remind them that someone has their back. That they are loved and cherished and that better days will come.

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Then he doubled down on its use aboard Air Force One by telling a journalist he absolutely stands by it because there’s ‘something wrong’ with Walz.

It didn’t take long for his followers to start using it, especially on social media. There’s also been a significant increase in bot activity using that word or displaying memes with that word on them.

Donald Trump Jr has posted a Franklin the Turtle meme that says ‘Franklin Drives by the Walz’s House and Calls Him the R Slur”. It’s become so bad that Walz’s daughter Hope has taken to TikTok to call out the behaviour.

She says that she’s receiving horrible messages from Trump supporters. That there’s been a noticeable increase in people using this word to describe her and members of her family.

Her brother Gus is disabled. He’s had to deal with being called this slur his whole life. Now MAGA cultists are driving past his house screaming it at them, all because Trump lacks the basic human decency to avoid ableist slurs.

It must be called out. They’re tormenting this family and attacking the entire disability community.

It’s taken decades of effort on our part to get people to remove that word from their regular vernacular. To get people to understand how hurtful and discriminatory it is.

When someone like the President uses it, it ends up being normalized. People end up starting to think that it’s ‘ok’ to say that. It’s ok to call someone that. It’s ok to discriminate against us.

It’s not ok.

It’s also not the first time that Trump has targeted disabled people. During his 2015 run for President he publicly mocked Serge Kovaleski, using gestures and facial expressions which were meant to demean and humiliate.

It should have ended his campaign. The fact that it didn’t demonstrates just how acceptable ableism is.

He also told his nephew, Fred Trump III, that his disabled son should just be ‘left to die’. He added, ‘those people. Those costs. Why don’t they just die.’

If that’s not enough to convince you of his eugenicist goals, consider who he’s put in charge of public health and what message they’ve been sending for the last few months.

RFK Jr is a notorious anti-vaccine grifter who has been systemically dismantling the CDC and the vaccine advisory committee. Measles and pertussis are back and just last week he removed the recommendation for babies to be vaccinated against Hepatitis B. Many doctors say this will lead to liver cancer, cirrhosis and chronic illness.

Dr Oz is in charge of CMS and has repeatedly stated that people must ‘prove they matter’ in order to receive healthcare. He pushes the false narrative that everyone on Medicaid or SNAP is sitting at home watching TV all day. That they could ‘try harder’ to be well. That disability can be overcome.

Dr Makary is the head of the FDA and says similar things about how disabled people can ‘try harder’ to get better. He has said that the government should treat diabetes with cooking classes. He pushes the idea that disability is a personal and moral failing.

Experts say that for the first time this century they expect to see preventable child deaths rise after decades of steady decline.

Preventable deaths. Preventable disability. This is what the regime is creating. They’re gutting healthcare, food assistance and social supports while making their population sick.

It’s eugenics disguised as ‘fiscal responsibility’, and it’s going to kill people.

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This is Ableism

In many ways it’s still socially acceptable to discriminate against disabled people. Most of us experience forms of discrimination every single day. Sometimes it’s small and other times it’s being called the R slur.

Either way, the general public sees us as second class citizens. Drains on resources. Expendable. And because of that, they tend to discriminate against us and they don’t push back when someone like Trump uses that word.

As a society we’ve been working for decades to improve inclusion and acceptance of all marginalized individuals. We’re nowhere near where we should be, but some progress has been made.

There’s more awareness of the various types of slurs and why they shouldn’t be used. There’s more people willing to call out bad behaviour and stand up for marginalized individuals. There’s more tolerance of those who are ‘different’.

The Trump regime seeks to destroy all of that. They’re pushing a white Christian nationalist agenda which will ultimately leave everyone else behind. They may have started with immigrants, but they won’t stop there.

They’re aggressively targeting disabled people and it’s a bad sign of what’s to come.

How do I know?

We’ve seen this movie before.

It feels as though we’re in mid 1930’s Germany right now. Hitler is in power but has not yet begun the full range of horrors that he has planned.

Discrimination is ramping up. People are being dragged from their homes. Families are being ripped apart. Immigrants are being blamed for the economic crisis. Disabled people are being labeled ‘useless eaters’. Romani, gay people and anyone ‘different’ is being targeted.

Most people who aren’t targets are staying silent. They aren’t speaking out. They’re going along to get along. They know that atrocities are occurring, but they think if they don’t belong to one of the ‘expendable’ groups they will be safe.

So they sit back and do nothing. Or worse, they report on their friends, families and neighbours to try and earn points with the Nazi regime.

We can’t sit back and do nothing. Time is running out to change course. The regime is escalating incredibly quickly.

They’re blowing up boats in the Caribbean. They’re canceling citizenship ceremonies for immigrants who’ve completed the entire process the ‘right way’. They’re detaining US citizens. They’re talking about compiling lists of Americans who are ‘extremists’ (ie anyone who’s anti Trump, anti ICE or anti capitalism). They’re gerrymandering states to prevent free and fair elections.

We’ve seen this movie before.

I know I keep saying it, but too many people seem unwilling to accept reality. The America we knew is gone. It’s been transformed into something very dangerous, but we still have time to stop it.

We can’t stop it without accepting how we got here. We allowed these atrocities to happen. We allowed the hateful rhetoric to go unchallenged for too long. We looked the other way.

To be clear, by ‘we’ I mean society as a collective whole. I know many of my readers have been doing everything they can to fight back against fascism. I know they’ve never and would never look the other way, but we need more people to join the fight.

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You Can Start With Refusing to Let the R Slur Be Normalized

It may not seem like much, but fighting back against the resurgence of the R slur is not nothing. It’s actually a very big deal. Eugenics and fascism go hand in hand. There can be no social justice without disability justice.

The disabled were one of the first groups targeted by the Nazis because they knew that people wouldn’t fight for us. They knew that deep down most people have fear and disdain for disabled people, so it’s easy to commit atrocities against us.

Trump using the R slur is not a mistake. It’s not a slip up. It’s not him just being a cranky old man. He’s testing the waters. He’s trying to see what he can get away with. He’s furthering their eugenicist agenda.

I first wrote about this in November after he won the election. I explained that ‘you do you’ Covid policies and the push to leave the vulnerable by the wayside had contributed to Trump’s victory.

People were so eager to go ‘back to normal’ that they left people behind. They stopped caring about those who were disabled and high risk. They stopped caring if someone died of Covid. They made themselves the arbiters of another person’s worth, and decided that people like me were less important than their ability to go to brunch and cosplay 2019 ‘normal’.

When you decide that some people have ‘less worth' than others, you’re paving the way for fascism. Whether you realize it or not, you’re making it easy for someone like Trump to seize control.

His regime preyed on the understandable fears and frustrations that come out of a global pandemic.

People are sicker than they were before Covid. They’re experiencing more financial hardship. Many have lost their livelihoods. Over half of Americans can’t afford a basic standard of living.

When people are suffering they look for two things. Someone to blame, and someone to ‘fix it’.

Trump promised to deliver both.

He blamed the immigrants, the disabled and marginalized communities, and he promised to fix it for the ‘good Americans’ on Day One.

It was all a lie, but it worked. We witnessed something similar after the 1918 Spanish Flu pandemic. It helped give rise to Hitler and the Nazi party.

We’ve seen this movie before.

We Can Still Change Course

I believe we can still change course, and it’s incumbent on every one of us to do whatever we can to resist what’s coming.

It can be hard when you’re disabled because many of us lack the physical ability to go protest. We lack the financial resources or flexibility to participate in boycotts. We are busy fighting for our literal survival and so joining a political movement is often the last thing on our minds.

But there are always ways you can help.

Resist the use of the R slur. Call out bad behaviour whenever you see it. Don’t be afraid to make your disability visible! Make sure people know that disabled people are just like them.

We are your friends and neighbours. We are not something to fear. We are not expendable and we refuse to be left behind.

I can understand the urge to hide right now. Every day I wake up and think about quitting my advocacy and going back to hiding my disabilities.

It’s scary to be vocal during a fascist uprising. It’s scary to be a visible minority. It’s scary to join the resistance. It’s scary to do the right thing.

It’s also necessary.

There are more of us than there are of them, and it’s important we remember that.

It’s important we lift each other up, encourage one another and draw strength from those who are fighting the good fight every day.

If you need to take a break, take one. It’s ok. Trust that your community has your back and will keep up the fight while you rest and recover. Never forget that survival is also a form of resistance.

Whatever you’re doing to fight back, thank you.

Thank you for reading. Thank you for supporting me. This community keeps me going. It keeps me from giving up and going back into the shadows. You make me strong so I can hopefully be strong for others.

This will end eventually. We will win. We just have to keep up the pressure, keep speaking up and keep the faith.

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In it they stood motionless, holding photos of themselves at the age they were when trafficked and abused by Epstein, Maxwell and many others.

Why did they do this? Because the closer we get to the release of the Epstein files, the more the MAGA machine attempts to push a narrative that the victims weren’t actually children. They were ‘barely legal’ adults. “Young women”. It wasn’t ‘that bad’.

I wish I were joking, but we’re seeing it all over social media.

Megyn Kelly went on her Sirius XM show and said ‘I haven’t seen anyone under 10 come forward.’ She acted as though ten years old should be the bar for pedophilia. Force a 12 year old to have sex? That’s ok… they’re almost grown up anyways.

Shortly after Megyn’s show aired, men flocked to social media to out themselves as pedophiles.

For some reason, there a lot of men who are only too happy to admit to being sexual predators.

Are they looking for MAGA street cred? Do they want to get in Trump’s good graces? I’m not sure. My fear is that it’s even more sinister than that… it’s another move towards Project 2025’s ultimate goal of removing women’s rights and making us the property of men again.

They want to normalize grown men having sex with teenagers because if they get their way, we will be married off as soon as we hit puberty. We will go from our father’s home to our husband’s home with no time in between. No chance to become independent. No ability to build the life we want for ourselves. No retaining our innocence.

We must not let that happen.

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What About Trump?

Don’t get me wrong, I also believe this push to normalize pedophilia is designed to insulate Trump from the inevitable release of the Epstein files. I think his team have come to the conclusion that they can’t stop it from happening, so their only hope is to shift the narrative and somehow make pedophilia acceptable.

It’s our job to ensure they don’t get away with it.

If Trump participated in the rape and trafficking of children, he must be removed from office, arrested and charged accordingly. Same with every other monster in those files.

I don’t care if they’re Democrats or Republicans, celebrities, journalists or politicians. If you hurt children that way, you must pay the price.

What’s particularly egregious is many of the people doing an about face on this issue are the same folks who were screaming about Epstein when Biden was President.

They wouldn’t shut up about the cabal of pedophiles, pizza gate and how demonic it is to rape and assault children. The Epstein survivors haven’t changed their age, they were always teenagers.

So why was it a horrific crime a few years ago and now they want us to believe it’s socially acceptable and ‘not that bad’?

It’s because they want to cling to power. They want their team to ‘win’. They want Trump to stay in charge.

As I said in a Note the day the video dropped, the Epstein files aren’t a team sport. What was done to those children was wrong, and everyone involved must be brought to justice. If you are suddenly pushing the narrative that it wasn’t ‘that bad’ just because your team is now implicated? You deserve to be punished too.

Why Don’t the Survivors Name Names?

This is the other prevalent narrative going around. People are blaming the survivors. They’re claiming that they shouldn’t need the government to release the files, they can just go to the police or publicly name their assaulter.

There are between 300,000 and 400,000 untested rape kits in police stations across the United States. That’s thousands of women who did go to the police and were denied justice. Those numbers don’t include all the people who went to the hospital or police and weren’t even given a rape kit.

1 in 3 women will be sexually assaulted in their lifetime. Many advocates argue that number is probably closer to 1 in 2. Yet vanishingly few rapists are ever charged, prosecuted or sent to jail.

They generally get away with it, and what’s worse, our system is designed to punish the victims.

They’re asked things like ‘what were you wearing? What were you drinking? Were you encouraging him?’

Their entire lives are put on trial looking for any evidence that they invited the behaviour, instead of saying that no one ever ‘invites’ this behaviour and any man doing it is the one in the wrong.

The victims have their lives ripped apart, have to relive the assault over and over again and more often that not, their rapist still goes free.

Now imagine your rapist is one of the most powerful men in the world. That’s what the Epstein survivors are up against.

The men who participated in these horrific crimes are rich, powerful and could easily destroy the women who come forward.

They could bury them in defamation lawsuits. Threaten their lives and the lives of their families. Many of them have already been threatened and dropped their cases as a result.

The government should be the one to name names, and then they should prosecute all the offenders. You can’t expect these women to endure any more trauma and pain than they’ve already been through.

Without the full weight and support of the US government behind them, they won’t ever get justice. The men will never be prosecuted because power insulates and protects. It shields.

As a society we have to say that power has protected predators for far too long and it’s time for change.

Misogyny in Medicine, Women’s Rights and Disability Justice

The Epstein files are clearly a women’s rights issue. Sexual assault, misogyny and rape are serious problems which need to be addressed.

But just like in the case of Gisele Pelicot, who I wrote about last year, medical misogyny and disability justice are also part of this broader topic.

There can be no social justice without disability justice. Why? Because disabled people are often the first group to be mistreated, left by the wayside or discriminated against.

We’re treated as ‘less than’ or ‘useless eaters’ and in many ways society still views discriminating against disabled people as socially acceptable.

The President has publicly mocked a disabled reporter and said that disabled people ‘should be left to die’. He recently used the ‘R slur’ to describe Governor Walz, and since then more MAGA followers have begun using it as well.

Those in positions of power exploit this. They test the limits on us. They see what they can get away with .

When you fail to stand up for disabled people, you are showing them that you will accept atrocities.

Almost everyone will become disabled eventually. Unless you die young and suddenly, you will experience disability in your lifetime. It’s one of the only minority groups you can join anytime and yet most people act like they will be the exception. They act like the rest of us did something ‘wrong’ to deserve our fate.

We see this same blame with the Epstein survivors. There’s a huge push among people on the right to blame them for what happened. To say they deserved it, they made bad choices, or worst of all, they ‘liked it’ so it wasn’t really rape.

It’s a disgusting narrative shift designed to get us to see those women as ‘less than’. They want you to see them as expendable and not worth getting worked up over. They want you to accept atrocities.

Do not allow it to happen.

They are not expendable. They are not to blame. They are absolutely worth getting worked up over.

Lastly, medical misogyny played a role in what happened to many of these girls. The intersection of misogyny in medicine, sexual violence and disability is one that can’t be ignored.

The Epstein survivors experienced unspeakable trauma. Going through an experience like that can and will have catastrophic effects on both physical and mental health.

Many of the women also had health issues while they were being trafficked, and those issues were ‘managed’ by Epstein.

In her book Nobody’s Girl, Virginia Giuffre spoke of how she experienced severe bleeding and cramping after one of her assaults.

She said that Epstein and Maxwell took her to the hospital where Epstein lied about her age and was the only one to communicate with the doctors. She was told she had a miscarriage, yet had a tiny incision on her abdomen suggestive of surgery for an ectopic pregnancy.

These girls were denied autonomy over their medical care. They weren’t given the full story about their health complications. They weren’t protected from pregnancy or STIs.

The physicians treating these girls had a chance to protect them. They could have involved authorities. They could have called a social worker. They could have not allowed a powerful man to dictate the way in which they cared for their patients.

They neglected their duty to do no harm. They failed these girls. Gisele Pelicot’s doctors did the same thing. She went to them over and over with complaints of bruising, vaginal pain, STIs, memory loss and more… and every time they deferred to her husband.

They deferred to the man in the room at the expense of their patient.

This must be stopped.

Too many rape victims end up with lifelong health challenges as a result of their assault, and they may experience disability as well.

They deserved better than this. We all deserve better than this. No one should ever be forced to have sex against their will, least of all children.

Do not allow those in power to change the narrative.

Do not allow them to tell you that certain people are expendable or deserve the harm that comes to them.

Do not allow them to inure you to the horrors of sexually assaulting and trafficking children.

Keep speaking out. Demand the release of the full and unredacted Epstein files and demand that everyone involved be brought to justice.

My sincere hope is that one day we won’t have to fight like this anymore. That eventually we will stop the cycle of abuse.

Until that day, we keep shining light into the darkness. We keep standing with all survivors of sexual assault. We insist that shame change sides.

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The news shook the disability community, myself included. Alice Wong has been a leader, an inspiration and a force for disabled voices for as long as I can remember.

A talented writer, she encouraged disabled people to take up space in the world. To be visible despite society trying to demand we be invisible. To embrace our disabled bodies instead of fighting against them. To dismantle our own internalized ableism and learn how to love ourselves and move through this increasingly hostile world.

Her writing was a gift. A comfort in difficult times. A roadmap for how to accept yourself and lean in to being disabled.

Many people would find her writing when they first became disabled, and they would embrace it because it was accessible, raw, honest and focused on how to learn to adapt and survive.

I was one of those people. Her work helped guide me towards a place of acceptance, but it also inspired me to become an advocate. It inspired me to take my previous skills as a theatre critic and turn them into disability visibility.

The Disabled Ginger would likely not exist without her.

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When I first became disabled I rejected the label. I didn’t want people to see me that way. My disabilities were invisible so I figured no one ‘needed to know’. I felt ashamed. I was afraid of how friends and colleagues would treat me.

Would they see me as ‘less than’? Would they think I wasn’t as capable as I was before? Questions swirled in my mind that were too hard to answer, so I shoved them down deep and continued moving through the world as though nothing had changed. I denied my own reality. I refused my body the accommodations it needed. I pretended I was ‘fine’.

I was also worried about whether the disability community would accept me. I don’t ‘look’ disabled. I was still working and earning a living. Did that mean I wasn’t ‘disabled enough’? I wasn’t sure.

My fear was that I would alienate my friends and loved ones by identifying as disabled, and then be rejected by the disability community for not being disabled enough.

For years I suffered through this internal conflict with very little support, and then I found Alice.

Her book “The Year of the Tiger” changed my life. It was about her life as an activist and her fight for disability justice.

I remember reading it and wondering ‘what’s disability justice? I’ve never heard that term before.’

Imagine that. I had never heard about disability justice despite being disabled myself. That’s because ableism is everywhere and in many ways, society still views it as ‘acceptable’ to discriminate against disabled people.

We don’t have parades or awareness campaigns. There isn’t a push to stop using ableist slurs and language. People don’t call others out when they discriminate against the disabled. It’s still socially acceptable, and it’s a big part of why I was afraid to admit I had joined their ranks.

Alice wasn’t afraid. She was fearless. She embraced her disabilities and made sure the world saw her for who she was.

Her work helped me understand that there is no social justice without disability justice.

She helped me learn that my own prejudice against disabled people was what was holding me back from accepting myself and leaning into my illnesses.

I slowly began to write about my experience. Short posts on twitter. Then longer threads. Then I began participating in Spaces (a twitter feature that is similar to a group zoom call) and I would publicly identify as disabled.

I began learning about disability justice and the various ways we are discriminated against.

I fought against ableism and eugenics. I raised awareness for Canada’s Medical Assistance in Dying program and the unethical ways it was targeting low income disabled people.

It was my posts about MAiD that caught Alice’s attention, and we became contacts. She had inspired me to become an advocate, and she would go on to inspire me to create The Disabled Ginger.

I am forever grateful to her for that, it was an incredible gift.

This platform has connected me with people all over the world, and it’s given me a reason to get out of bed in the morning.

It’s given me a way to help the disability community and fight for both disability justice and social justice.

It’s helped me learn to accept myself and lean into accommodations, and now I try and help others do the same thing.

Being disabled can be scary. Living in a body that doesn’t work right is an unsettling feeling. Living in a world that sees you as ‘better off dead’ is crushing.

Nothing about this existence is easy, but as Alice would say, we are also oracles. We are a mirror and if you look at us, if you refuse to look away, we can teach you so much about life, death and suffering.

That is a unique superpower we have. What we’ve endured makes us strong. It helps us see things that other people miss. It strips bare all the noise of this world and leaves us with what really matters. It unearths your purpose and helps you figure out your priorities.

Thanks to Alice, I went from being ashamed of being disabled to seeing myself as an oracle. To embracing my unique potential to lead and help others accept their disabilities. She helped me become a writer again.

I will never forget her.

In her honour, I want to mention a few causes she was passionate about and encourage people to support them to keep her memory alive.

One of them was Covid. Alice had a tracheostomy which meant she was unable to mask. She was extra vulnerable to Covid infections and when the world rushed ‘back to normal’, society decided to leave people like her by the wayside.

She wasn’t willing to accept that. She fought tirelessly for mask mandates in healthcare and clean air standards. She shared stories of being in the hospital and having her disability accommodation requests ignored.

She explained how much Covid could hurt her and how vulnerable it felt to be unable to wear a mask to protect herself.

She was a perfect example of why other people need to wear masks even if they don’t personally think Covid will hurt them. It’s an airborne virus and we all share the air. If we don’t take steps to protect one another, we all remain at risk.

When states started to try and pass mask ban bills, Alice was leading the fight against them. She pointed out they would mark a return to ‘ugly laws’ and force disabled people out of public spaces.

Mask bans were clearly designed to punish us for daring to care about avoiding Covid. They were designed to convince all the non disabled people that the threat had passed and they could go back to enjoying life. Those pesky sick people who keep reminding you about Covid? We’re going to disappear them for you.

Alice wasn’t having any of that, and neither was I. We both fought mask bans as much as we could alongside members of the disability community.

She wrote a searing indictment of the bans in an article for Teen Vogue, and it was the first time I got to collaborate with her. Being asked to write for one of her articles was one of the high points of my life, and I encourage everyone to read the piece to better understand why some of us are still fighting for people to mask up.

She also vocally opposed the genocide in Gaza, and rightfully pointed out it was a disability rights issue.

The ongoing starvation and torture of the Palestinian people is causing disability. It’s impossible to care about disability justice and ignore what’s happening in Palestine. She showed me that, and once again she has my sincerest thanks.

She helped create ‘Crips eSims for Gaza’, a crowdfunding initiative to help raise money to get the people of Gaza eSims so they could connect to the outside world. To date it has raised $3,123,421. If you want to donate or learn more, you can do so here: https://chuffed.org/project/crips-for-esims-for-gaza

Alice left her mark on this world. She helped more people than we will ever know. She will be greatly missed.

In her honour, please wear a mask (especially in healthcare). Please stop using ableist slurs and language. Please help engage in disability justice. Please care about injustice around the world. Please help disabled people embrace their disabilities, find their unique power and move through this world with the courage, ferocity and integrity of warriors.

My heart is heavy. It will be heavy for awhile. We’ve lost so many people this year, and the sad reality is we will probably lose more.

No one is guaranteed a tomorrow, and living with disabilities often means having to embrace your own mortality and get comfortable with knowing you probably won’t live as long as your peers.

Alice understood that, and she made the most of the time she had.

I’m trying to do the same thing.

Thank you to everyone who is on this journey with me. For your support. For your kindness. For helping pick me up when I’m feeling too low to continue on.

We are stronger together, and one thing Alice’s death has already shown me is just how united this community can be.

None of us are ever truly alone, and that might be the greatest gift of all.

I will leave you with Alice’s own words, courtesy of her friend Sandy Ho:

The above graphic reads:

This is Alice’s friend Sandy Ho, posting. Per Alice’s wishes, this message is being shared at the time of her passing.

Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin.

We need more stories about us and our culture.

You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I’m honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don’t let the bastards grind you down. I love you all.

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The USDA has a contingency plan to cover SNAP, but they are also refusing to pay out.

The government is making a very conscious decision to allow millions of Americans to starve, including the elderly, children and people with disabilities.

What’s worse, they seem to be funding an army of bots who are swarming social media with misinformation about SNAP and trying to convince the general public that everyone on it just needs to get a job. They’re all ‘scammers’. It’s their own fault. They ‘deserve’ to starve.

No one deserves to starve.

Regardless of what you may hear from Republicans or MAGA internet trolls, a large number of people on SNAP are working. They have jobs but are still living below the poverty line.

The Walton family (who own Walmart) are worth over $400 billion, yet many of their employees are on SNAP.

Jeff Bezos is worth over $400 billion, yet many Amazon employees require SNAP.

The people who need help are not the problem. It’s corporate greed. It’s an unwillingness to pay a living wage. That’s why there are so many Americans relying on food assistance.

The ones who aren’t working are children, the disabled, the elderly and unpaid caregivers. They’re people who can’t work through no fault of their own and require assistance to ensure they can keep food on their table.

Yet the government thinks it’s ok to rip this assistance away from them. There was very little warning that SNAP wouldn’t be funded come November. There’s never been a government shutdown which impacted food assistance.

As a result, people had no time to come up with contingency plans. No chance to try and stock up (if they could even afford it). In fact, whenever I post about SNAP I invariably get panicked messages from readers who didn’t know they wouldn’t receive their funding until they read my post.

This is a failure of government and mainstream media to protect the most vulnerable in society.

Food is a necessity for survival. It should be a basic human right. No one should go hungry in the richest country in the world.

This should be the top story on the news every night. It should be a leading headline in major media outlets every day. Yet it’s not. If you’re not chronically online you may still not know what’s about to happen.

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The Republicans talk about it, but only to blame the Democrats, immigrants and trans people. They lie. They violate the HATCH Act. They do whatever they can to shift blame and obfuscate the message so that their voters, many of whom rely on SNAP to survive, won’t realize the horrible truth… The GOP are about to let Americans starve.

The bot armies are also blaming every marginalized group they can. They’re blaming immigrants, trans people, poor people, the disabled and the elderly. They stop short of blaming children, but have no issue blaming their parents. Saying that if children go hungry, it’s due to bad parenting and the kids should be taken away.

I am begging people to pay close attention to what’s happening right now. You don’t fund a bot army for ‘fun’. You do it to push an agenda. And they’re clearly pushing the narrative that no one ‘deserves’ food assistance. That ‘handouts’ are no longer an option in America. That you should pull yourself up by your bootstraps and be ‘productive’ or prepare to starve to death.

It’s full on Nazi rhetoric, and it’s not going away.

The Nazis called people who needed assistance ‘useless eaters’, and in choosing to turn off food assistance, this regime is doing the exact same thing.

What’s worse, the “useless eater” rhetoric has been used time and time again to target disabled people, and we are once again in the line of fire when it comes to SNAP funding cuts.

It’s not as easy for disabled people to use food banks as it is for other people. That’s a reality we have to face. Whether it be physical challenges and barriers, special diets or a combination of factors… cuts to SNAP will hit our community hard and fast.

Many people with complex chronic illness are already malnourished. They’re living below the poverty line while facing a punishing “disability tax”.

If you don’t know what that is, it’s the term given to reflect the extra costs people with disabilities have to absorb.

Being sick is expensive! Most won’t understand it until they go through it themselves.

We are forced to live in legislated poverty while having higher medical costs and drugs costs. We may need to buy assistive devices and accommodation equipment. We often need to hire caregivers, rely on expensive delivery and other paramedical services and supplies. The costs add up fast and even with SNAP, many disabled people go hungry.

When you have to choose between food and medicine, the medicine often wins. It’s unfair that anyone should face that choice and yet it’s a daily reality for many of us.

People are rationing their medicine. They’re rationing their food. They’re going to lose their SNAP at a time when they’re already weak and struggling.

Lastly, food banks will not be able to accommodate most special diets. Disabled people are able to use their SNAP funding at various stores and online retailers so that they can purchase specialty items. When you’re sick, “just eat rice and beans” isn’t a feasible solution.

Many people require gluten free, sugar free, low histamine or high/low protein options. They might need all liquid diets. They could require special formula for their babies. When you’re disabled, options narrow. Costs rise and flexibility is limited. We must protect our community and refuse to allow anyone to be left behind.

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What Can We Do to Help Each Other?

First, we need to recognize and accept the sheer scale of the problem. 42 million people rely on SNAP. Food banks, churches and charities are not equipped to handle that kind of an influx.

For every meal that a food bank gives out, SNAP provides nine.

Food banks are already struggling due to Trump cancelling 94 million pounds of food aid.

Federal workers have been furloughed for over a month, and many of them needed to start using food banks when they missed their first pay cheque.

In fact, a video from Maryland shows line ups around the block for a local food bank.

So it’s ok to feel overwhelmed. It’s ok to feel scared. It’s ok to think this problem feels ‘too big’ to tackle. Feel all the feelings because they’re valid, but remember that we all have the power to make a difference. There are things we can do.

It’s going to start with strong networks of community care and a commitment to checking on one another. We must agree it’s no one’s fault that they rely on SNAP. People are not to blame for this society wide failure, and they especially shouldn’t be blamed for not having a contingency.

The USDA was the contingency. They should be funding SNAP, and many states have filed lawsuits to try and force them to do their duty.

It is not your fault if you’re struggling. It’s not your neighbours fault if they’re struggling. The system failed and now we must save one another.

I will be the first to admit I don’t have all the answers, but what I do have is an incredible community of resourceful, caring and empathetic people who I know want to help others.

I’m hoping that together we can come up with suggestions and ideas to help feed one another.

I’m going to list my suggestions below, and I invite people to add their own in the comments of this post. Let’s brainstorm, think outside the box and try and save as many people as we can!

• If you know someone is relying on SNAP, check on them. Don’t assume the food bank will help them. Don’t assume they have a contingency. Call or text them and ask if they need help.

• If you’re someone who can drive, volunteer to give rides to low cost grocery stores and/or food banks. Many disabled people can’t drive and have limited mobility.

• Likewise, volunteer to drop off food to people who are housebound.

• Donate to food banks! Most food banks would prefer money in lieu of food as they’re able to stretch a dollar further than we can. They also know what they need most. That said, every bit helps. You can also set up a recurring monthly or weekly donation with many food banks.

• Give to local churches and charities who will also be stepping up to help feed people in need.

• If donating food, please remember to consider those with special diets. Purchase some gluten free options. Sugar free options. Low histamine options. Try and think outside the box and pick a few items that someone with a chronic illness might need to survive.

• Don’t forget baby formula! Many SNAP recipients are new mothers who are struggling to feed their children. Make sure you donate formula and you can also give things like diapers, baby wipes and other infant supplies.

• Donate a few ‘treats’. There’s a nasty tendency to act like poor people don’t “deserve” luxuries. That they should eat whatever they’re given and be thankful for it. I promise you, people will be thankful for any food they can get come November. But that doesn’t mean they don’t deserve a treat. People are scared. They’re hungry. They may have children who don’t understand why their parents can’t buy groceries anymore. Having a sweet treat is a great pick me up and they shouldn’t be denied that just because they can’t afford it.

• Donate to mutual aid. I can’t stress this enough. Even if everyone steps up and starts donating to food banks, they still won’t be able to feed everyone. People are going to be relying heavily on mutual aid. Don’t judge folks for asking for help. If you can spare a few dollars, donate. If you can’t donate, boost and share.

• Consider potlucks and/or community cooking events where people can batch cook large portions for their friends and neighbours. When you cook large quantities you save money. If you’re getting together with your community to cook, make sure you remember the housebound person who can’t participate and drop meals off for them.

• Look for local restaurants, coffee shops and businesses that might be providing free meals. Many are already saying they will give food to SNAP recipients, no questions asked.

Remember, there are a lot of good people in the world. They want to help. It can be incredibly difficult to ask for help, but at the end of the day most folks don’t want to see others go hungry.

If we work together, we absolutely can soften the blow. It feels insurmountable but I promise that it isn’t. It’s just going to require a commitment to helping our fellow human beings, and we have to keep talking about the issue.

The regime is flooding the zone for a reason, and I guarantee you they want people to forget that SNAP isn’t being funded.

Do not let them get away with it. Make sure you post about SNAP as often as you can. Tell your friends and family. Keep shouting about the 42 million Americans who’ve been abandoned by their government and left to starve.

Be loud. Be proactive. Be vigilant.

We’ve got this.

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Why would ICE require guided missiles? They’re not at war. They’re not having to fight against people who are using destructive weapons against them. Their job is to enforce immigration policy. Their use of chemical munitions, pepper spray bullets and less lethal ammunition is already dangerous and questionable, but adding in the possibility of missiles is terrifying.

I believe ICE enforcement is poised to become a mass disabling event, and I’m concerned that very few people are discussing it.

They’re already targeting the disabled and most vulnerable. They’re bullies, and when bullies get access to increasingly destructive weapons, nothing good happens.

For example, last weekend a story broke about an autistic 15 year old who had gone missing and ended up in ICE custody.

It was quickly followed by the story of a 13 year old who ICE sent to a juvenile detention facility 500 miles away from his home.

Then there was the 15 year old girl who was violently dragged from her vehicle and thrown to the ground as she screamed “I’m not resisting!”. She had just had kidney surgery and the altercation put her back in the hospital.

This is to say nothing of the children who were zip tied and thrown into UHauls in a middle of the night Chicago apartment building raid.

ICE seem intent on going after the most vulnerable in society, and that includes children and disabled people.

I’ve already written about Rodney Taylor and Alma Bowman, two disabled adults who’ve been held for months in Georgia ICE camps without reasonable accommodations or due process.

Then there’s Quinn Haberl, a disabled blind man who’s a regular protester at the Portland ICE facility. On Oct 21st he was dragged into the facility by his feet and agents dropped him on the ground.

At what point can we talk about how ICE is carrying out a eugenics plan on behalf of the fascists?

Targeting disabled people and children is an easy way to cull the population. They’re going after those least able to fight back.

They’re doing this while we have to listen to Dr Oz saying people must “prove they matter” to get healthcare, and RFK Jr lamenting how autistic kids won’t ever “pay taxes or serve in the military”.

This regime is hard at work painting disabled people as “useless eaters” in the hopes that society will look the other way when ICE snatches them up and disappears them.

Let’s face it, had the 15 year old who went missing not been autistic it would be a much bigger story.

It should be a much bigger story.

So I’m going to tell it and plead with the general public not to leave us behind.

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Why Was ICE Involved in a 15 Year Old Boy’s Disappearance?

Emmanuel Garcia is an autistic 15 year old who was with his mother selling fruit on the corner of Clay and Hampstead road in Houston.

He went to the bathroom, and the next thing his mother knew he was gone.

She immediately went to the Houston Police and filed a missing person’s report. Emmanuel is often non-verbal and she feared for his safety.

Six days passed with no word on his whereabouts. His mother feared the worst and held a public press conference pleading with the public to find her son.

Shortly after she received a phone call advising that he had been located. That was the good news.

The bad news? The Houston PD had found him the day after he was reported missing. Rather than contacting his mother or checking the missing person’s report, they involved CPS and ICE.

Why? Because he was a brown disabled kid.

Let’s not pretend this is anything more than overt racism and discrimination. They had her missing person’s report. They could have very easily returned him to his mother. Instead they chose to hand a child over to ICE and all but ensured his mother suffered days of anguish wondering what had happened to him.

They didn’t try and reunite him with his family. He ended up in the Office of Refugee Resettlement, and his mom is still fighting to get him back.

We should all be enraged that this was allowed to happen. There’s no reason to treat children this way, and it’s happening to far too many immigrant kids across the US. If you’re an immigrant and disabled? You’re even more at risk.

The story is still unfolding and details seem to constantly change, but the latest was the Houston Police Chief stating the boy may not be ‘actually autistic’.

I beg people to understand what’s happening here. The gaslighting and blame of a disabled child. Those of us with chronic illness experience this all the time. We’re often accused of faking or not being ‘disabled enough.’

Whatever happened to Emmanuel, one thing is certain… Had he been white it wouldn’t have happened. If by some stretch it did, we would have answers by now. The public would be demanding accountability.

Instead we have very little media attention and a story that is likely going to be swept under the rug. We may never know if Emmanuel makes it home to his family.

And before you assume that disabled adults are ‘safe’, I ask that you pay close attention to Alma Bowman and Rodney Taylor.

Alma is a disability activist who spent nearly three years in ICE custody during the first Trump regime.

When she was released, she worked with the government as a whistleblower to expose atrocities occurring within the detention facility. She recounted stories of forced sterilization, hysterectomies performed without consent and various abuses of power.

She was instrumental in helping close the Irwin Detention Centre.

In March, when she showed up for her monthly immigration check in, they took her again.

It’s clearly retaliation for being a whistleblower, and yet she’s been languishing in a detention facility for months. She’s once again being denied reasonable disability accommodations and her health is suffering.

The same thing is happening to Rodney Taylor, a disabled double amputee who came to the US when he was just two years old.

He owns a barber shop in Atlanta and is a beloved member of his local community. He was just days away from receiving new prosthetic legs when ICE grabbed him and threw him into a detention camp.

Their reason? A decades old burglary conviction for which he had been granted a full pardon.

That’s right, he was pardoned by the state of Georgia and somehow ICE still thought it was ok to detain him.

He’s been denied access to his new legs and as a result his health has declined considerably. He’s been placed in solitary confinement and has filed a Habeas Corpus lawsuit to demand to his release.

These are not the ‘worst of the worst’ criminals that the Trump administration promised to go after.

They’re easy targets. They’re people who were working and contributing to their community and who don’t deserve to be locked away indefinitely.

So why are they grabbing people like Alma and Rodney? They’re filling a quota. Immigration is big business in the United States, with many of the detention centres being private for profit prisons. The more people they throw in them, the more money they make.

But it’s darker than that. It’s also a very deliberate move to create huge groups of ‘others’ within the population.

Anyone who’s not white is an ‘other’.

Anyone who’s disabled is an ‘other’.

Anyone who’s not straight is an ‘other’.

They’re conditioning us to see these people as expendable so that we will look the other way when they’re targeted, harmed and potentially killed.

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ICE Enforcement May Very Well be a Mass Disabling Event

I began The Disabled Ginger to advocate for disability and chronic illness awareness. To increase disabled visibility and help people understand the need for more inclusion.

As I watch the atrocities ICE commits, I can’t help but think we’re witnessing a mass disabling event that very few people are talking about.

Sure, we hear stories when someone is injured by ICE. We occasionally hear of those who die in their custody.

But we almost never hear of the people they are disabling… and I fear those numbers may be higher than we will ever know.

What’s even more frustrating is that I’m not surprised we don’t hear about it. They’re barely tracking deaths that occur in ICE custody. What we do know is not encouraging. Yesterday a report was released stating that almost as many immigrants have died in custody in the last nine months than in the entirety of the Biden administration.

Over 1,200 people went missing from Alligator Alcatraz. They’ve just vanished. They might be dead. They might be in foreign prisons. They might be languishing in a detention facility somewhere with no access to lawyers or family.

Given how little media attention those lost souls are receiving, I think it’s safe to say no one cares enough to track the people who end up disabled due to ICE.

These facilities are known for having rampant disease spread due to overcrowding and poor conditions, as well as delayed or non-existent access to medical care. This is how disability occurs. People are mistreated, their medical needs are ignored and they end up with life long health issues.

The rampant ableism in our society is only assisting them in covering this up, because all too often people focus on deaths but completely overlook the disabled.

We must stop being overlooked.

What ICE is doing will absolutely cause disability, and considering the regime is cutting healthcare, social supports and disability programs, that’s incredibly dangerous.

When you have an administration that frequently says people must ‘prove they matter’ to receive healthcare or that people with disabilities and autism will ‘never pay taxes or serve in the military’… the writing is on the wall.

The people in Trump’s inner circle go out of their way to devalue disabled lives whenever they can, because they want the public to see us as expendable.

They want the public to blame us for high taxes, high inflation and anything else they’re struggling with.

They are scapegoating us so that when we die or disappear, no one will care.

We must say ‘No’.

We must say that our lives are just as worth protecting as everyone else’s.

We also must strive to protect one another since no one else will do it for us.

Protect Yourself When You Resist

Which brings me to my final point… it’s critical people protect themselves at protests, rallies and resistance events.

ICE has demonstrated they won’t hesitate to use chemical munitions, less lethal ammunition and some appalling arrest techniques. All of this force can cause disability.

We’ve watched as they’ve arrested protesters by zip tying them and putting them face down on metal carts.

We’ve heard horror stories of citizens like George Retes who was detained for three days in solitary confinement on suicide watch. He was just trying to get to work when ICE raided his place of employment. They smashed his windows and used tear gas before dragging him out of the car.

Tear gas is not a benign substance. These actions can and do hurt people.

So how can we protect one another?

• First things first, wear a mask. Not to hide your identity but to protect yourself and those around you. A well fitted respirator like an N95 is excellent protection against Covid and other airborne diseases, or you can upgrade to a P100 which will also offer protection against chemical munitions. Either way, it’s important to mask up to ensure we aren’t making one another sick. We need our health for the fight ahead.

• Learn what to do if you get hit with pepper spray or tear gas. You want to use water in your eyes, not milk. I see a lot of videos where people are using milk and that carries a risk of infection. Flush your eyes with water and seek medical care.

• Consider wearing eye protection. You can buy a full face respirator which will include eye protection or get a pair of glasses designed to withstand tear gas and pepper spray.

• Have an arrest plan. It’s important you know what to do in the event of an arrest, especially if you’re disabled or chronically ill. You likely won’t have access to your mask, medications or other accommodations while under arrest. Know how to contact a lawyer and have a buddy system that ensures someone knows where you are at all times.

• Make your events inclusive! That means ensuring that disabled people can participate, but also that when they participate they are protected. We’ve seen people in wheelchairs be forcibly pulled from their chair. We’ve seen people have their canes taken away. Mobility devices are an essential tool for disabled people and we need allies to help keep us safe. If you see an ICE agent taking someone’s mobility aid, get loud. Videotape it. Make sure it’s documented.

• We also need to call and email elected officials and demand that ICE stop using chemical munitions in residential areas. There was a video out of Chicago last week that showed them deploying large amounts of tear gas in a suburban neighbourhood. Homes were engulfed in smoke. If I lived in one of those houses that would be enough to send me to the hospital. I’m not the only one for whom chemical munitions pose an increased threat.

No matter what, it’s important we recognize the power we have as a community. There are more of us than there are of them.

If we work together, develop strong safety plans and commit to protecting the most vulnerable, we can and will make a difference.

We must refuse to do the fascists dirty work for them. Refuse to see anyone as ‘less than’ or ‘expendable’. Refuse to leave anyone behind.

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Over 1,000 immigrants have gone missing from Alligator Alcatraz and it’s barely a blip on the news. Why? Because this regime floods the zone. They’re committing so many atrocities that people get exhausted and can’t keep up. That’s one of the ways they keep getting away with it.

Unfortunately, when the zone is flooded important stories fall through the cracks. People who should (and need) to receive more media attention don’t get it.

One of those people is Rodney Taylor, a disabled double amputee from Georgia who’s been held in ICE custody since January.

I would never have heard of him if it weren’t for a reader who flagged his story for me. The only outlets covering his plight have been small local news stations that struggle to get views.

Without adequate media coverage and public outcry, people like Rodney don’t stand a chance. They get lost in all the noise. Quietly disappeared or left to rot in a detention facility.

I want to do my part to raise awareness because I believe the disability community needs to stick together. He’s one of us, and he’s in need of help.

I don’t have a big platform, but my hope is that folks will share this article, call and email Georgia legislators and help get Rodney released.

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Who is Rodney Taylor and Why is he in ICE Custody?

Rodney is a disabled double amputee who came to America at two years of age for medical care. He didn’t make the choice, his parents did. Living in America is all he’s ever known.

He built a life for himself and runs a barber shop in Atlanta. He recently became engaged to be married. He is a job creator in his community and is well loved by friends and neighbours.

So why does ICE have him? Because when he was a teenager he was charged with burglary. The state of Georgia later gave him a full pardon for the crime, and he’s never had so much as a parking ticket in the thirty years since.

That doesn’t matter to this regime though, because it’s not about going after the worst of the worst criminals. It’s about making money. It’s about hitting a quota. They often target those who can’t fight back. The elderly, the disabled, the unhoused. People who’ve done nothing wrong and are simply trying to build a better life for themselves.

When ICE grabbed Rodney, he was in the process of receiving new prosthetic legs. The detention centre is refusing to let him have a day pass to go get them, so his health is declining.

His old legs need to be charged for long periods of time, and more often than not it isn’t being done.

He was unable to make it to the dining room for meals, so other detainees were bringing him food. The facility offered him a manual wheelchair, but he’s missing digits on one of his hands and is unable to push it.

He’s been there nearly ten months, and in that time his disabilities have not been taken into consideration.

Now they’re threatening to send him back to Liberia which his fiancé says is surely a death sentence in his current condition.

This is Cruelty for Cruelty’s Sake

There is no reason for any human being to be treated the way Rodney is being treated. It really is cruelty for cruelty’s sake. The federal government also shouldn’t be allowed to override a pardon issued by the state in which an immigrant resides.

He was working, paying taxes and building a life… and now he’s rotting in solitary confinement despite having done nothing wrong.

It’s yet another way this regime practices eugenics. By refusing disabled people the accommodations they need, they’re actively targeting them for elimination.

People die in ICE custody every year, but we often don’t hear about them. Their stories go untold, their pleas unheard and the eugenics unopposed.

In fact, according to the Physicians for Human Rights group, at least 68 people have died in ICE custody since 2017, and the vast majority of those deaths were preventable.

Perhaps that doesn’t sound like a large number, but every single one of those deaths was someone’s loved one. Someone’s boyfriend, sister, brother, husband, child. Someone who’s death could have been prevented with adequate accommodations or medical care.

We should be enraged this is happening and doing whatever we can do stop it.

So What Can We Do?

I recently wrote about Jimmy Kimmel’s reinstatement and the power of collective action. Disney bent a knee to fascism, and the people fought back. They cancelled vacations and Disney Plus in droves. They voted with their dollar, and in less than a week Disney reversed course.

Fascism is terrifying. The current regime and their ICE thugs are terrifying. Eugenics is terrifying. We have a right to be afraid. But we are not without power. We are not without hope.

Kimmel is a perfect example of what we can do when we all work together, and Rodney needs collective action now.

He had a hearing at the end of August where he fully expected to be released, but the judge said they needed time to consider options. He may be deported back to Liberia despite the US being his home for nearly fifty years.

His fiancé is pleading with people to speak out on his behalf. There was a protest outside the Atlanta immigration office to demand his release.

Our voices need to be louder. There need to be more of us. His story deserves to be told.

Let’s tell it.

You can share this article. You can call or email Georgia legislators and demand his release. You can post on social media and demand Justice for Rodney. You can refuse to let him be another nameless, faceless victim of this cruel regime.

There’s also a petition being circulated by the Indivisible Georgia Coalition. It only has 2500 signatures as of today. I would love to see it get to 10,000.

Public pressure works. There is strength in numbers. I believe we can make a difference in Rodney’s life and in doing so, perhaps we can move the needle and improve the conditions for all disabled people being held in ICE custody.

One thing I know for sure is that it’s worth trying. It’s worth fighting back. It’s worth making your noise.

Justice for Rodney. Justice for disabled people. Justice for all immigrants. Abolish ICE.

You can sign the petition here:

https://www.change.org/p/demand-the-release-of-rodney-taylor-from-ice-detention

Rodney has also filed a habeas corpus application in federal court, citing that he’s been held for over eight months without proper medical care or an opportunity to post bond. If he wins, it could be instrumental in changing the the unlawful detention of immigrants.

For more on disabled people in ICE custody and the challenges facing them, you can read my previous article where I first told Rodney’s story. It also covers Alma Bowman, an immigrant and disability advocate who needs our help.

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If you’re low on spoons, please feel free to skip this article and come back to it when you’re feeling better.

I’m not going to discuss the science of vaccines or Tylenol, I will leave that to the myriad of experts who’ve been studying these issues for decades.

I’m also not going to write a lengthy article as I’m still trying to recover from a horrendous flare that has impaired my ability to write.

With all that said, I’m publishing today because I think Trump’s ‘Big Autism Announcement’ is something that our community simply can’t ignore.

I want to talk about the language and intention behind it. About the coded messages and what they mean for neurodivergent, disabled and pregnant people.

I want to appeal to the non disabled community for solidarity. To get them to understand the existential risk we’re facing, how scared we are and that we need their support more than ever.

I want to try and provide some comfort amidst the chaos, and some hope amidst the destruction.

What Was the Big “Breakthrough” on Autism?

First of all, it wasn’t a breakthrough at all. Trump, along with RFK Jr, Marty Makary, Dr Oz and Jay Bhattacharya announced that vaccines and Tylenol use in pregnancy are the likely causes of autism.

They had no science to back this up. In fact, there’s decades of research proving that vaccines and Tylenol are safe and effective and do not cause autism.

That didn’t stop Trump from telling people not to take Tylenol multiple times in a single press conference (can Tylenol sue him? I hope they can).

Needless to say, the conference was full of anti science and anti vaccine rhetoric that will only confuse and harm people.

But that’s not all it was. It was also a glimpse into their eugenicist movement. They let many comments slip that underscored what they think of disabled and autistic people. Of anyone they deem ‘weaker’ than them.

Trump said that he knows ‘tons of people who’ve never taken pills or vaccines and don’t have autism. What does that tell you?’

It tells me that he’s governing based on anecdotes. Of course there are people who’ve never taken any medication and don’t have autism, just like there’s plenty of people who’ve taken a ton of medication and don’t have autism. It proves nothing other than Trump’s inability to distinguish between anecdotes and settled science.

Perhaps one of the most concerning statements for me however, was when he said that pregnant women need to just ‘tough it out.’ He said they should refuse Tylenol at all costs, and if they absolutely couldn’t they should take as little as possible.

He put the blame on the women. He insinuated that if they ‘really’ cared about the health of their unborn child, they would be willing to endure any amount of fever, pain and suffering rather than take a safe and effective drug.

That’s why I say this is eugenics. As soon as you hear people start talking about ‘toughing it out’, or about how healthy the folks who don’t take medications are, you’re way down the slippery slope.

The inference is clear, those who require medication are ‘less than’. Those who can’t ‘tough it out’ are failing. Those who have disabilities like autism? They need to be cured because it’s ‘unacceptable’.

It’s terrifying to witness this blatant ableism disguised as compassion. It’s painful to watch them say they care about kids with autism while every statement they make about disabled people is dripping with blame and disdain.

Never mind the fact that everything they said was wrong, and a lot of it was downright dangerous. Tylenol is the only safe painkiller and fever reducer for use in pregnancy and for infants. If you scare mothers out of using it, you risk them using aspirin which we know causes death and disability to young children.

Trump’s advice was at best ignorant, and at worse actively harmful. I shudder to think how many pregnant women and children will die as a result of this eugenicist fear mongering. How many previously eradicated diseases will make a resurgence, and how much more disability we will see due to increased childhood viral illness.

But there’s also the giant elephant in the room which needs to be discussed… and it’s arguably the most important part for anyone living with disabilities.

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Are Disabled People “Better Off Dead”?

At the Charlie Kirk memorial on Sunday, RFK Jr referenced all the ‘fates worth than death.’

At the press conference today, they spoke about autistic people as though it’s the worst thing in the world. Something to be prevented at all costs. That people with autism have a miserable existence and it’s completely unacceptable to permit any more autistic babies to be born.

Where have we heard that before? Nazi Germany. They went after disabled people. They called them ‘useless eaters’. They tested the gas chambers on them. Discarded them because they weren’t economically active, they weren’t strong and fit, and they didn’t want them to reproduce and contaminate the gene pool.

The rhetoric coming out of this regime is very similar, and the disability community desperately needs you to start paying attention.

I’m sure there are many people out there who do want a cure for autism, but I also know many autistic people who wouldn’t change a thing about their existence. Who are proud of their autism and their disabilities.

These racist, misogynistic men do not have the right to tell us that we are ‘less than’. They don’t have the right to tell us our lives are untenable when most of us feel differently. They don’t have the right to act as though being born with a disability is a fate worse than death. It’s not.

Disabled and autistic people can survive and thrive… but that’s very hard to do when there are fascists in charge.

How Can We Support One Another Right Now?

First of all, if you know someone who’s neurodivergent please check on them. Reach out and ask if they’re ok or if you can do anything to support them.

If you’re pregnant or know someone who is, make sure they follow their doctors advice and not this harmful nonsense.

More than anything, engage in disability justice. Speak out against ableism, eugenics and junk science. Protest. Boycott. Call your elected officials and demand RFK Jr and his team resign.

We are not powerless. Disabled people are not small in number and we are not giving up without a fight. When we work together, and especially when we have the support of the broader community, we can accomplish just about anything.

If people would decide that we are not expendable, if they would make a commitment to fighting for us, we would be much safer.

It’s easy to feel hopeless right now. I’m there with you. These last few weeks have been devastating to my baseline and I’ve lost hope more times than I can count.

But we must not give up. That’s what they want. They want us to roll over and accept our fate as ‘undesirables’. They want us to refuse to fight back. They want us to go quietly.

If you need proof that collective action works, look no further than what happened this week with Jimmy Kimmel. ABC suspended his show indefinitely due to comments he made about the Charlie Kirk shooting.

Trump and the FCC Chair put pressure on the network, and the network caved to fascism. They tossed the first amendment out the window and attempted to silence a comedian who did nothing wrong.

People were outraged. Celebrities urged their followers to cancel Disney and Hulu. Writers terminated projects with the network. And millions of regular people boycotted the service. There were so many cancellations that the website actually crashed.

What happened? They reinstated the show. Because at the end of the day those in power respond to money and public pressure. That’s it. It’s not about doing what’s right, it’s about what will make them the most money.

Disney underestimated the support Kimmel had. They underestimated how angry people would be at this blatant violation of free speech. So they changed course.

Now imagine if the larger community would stand in solidarity with disabled and autistic people? Imagine if they would work together to ensure this regime knows that they can’t treat us as expendable?

Imagine if they demanded an end to the junk science, eugenicist rhetoric and anti vaccine statements?

It’s possible, but we need people to see our value and speak up for us. We aren’t as popular as Kimmel. We don’t have his platform or celebrities willing to fight for us. But we’re here and we are worth fighting for.

There’s millions of us, and we don’t want to be left by the wayside.

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As a result, many are celebrating the cancelled research because they don’t understand how these vaccines actually work, nor do they understand the human cost to cutting this funding.

I’m the human cost. Families like mine are the human cost.

I lost my Mom to pancreatic cancer when I was 19. She was only 48.

My grandmother also died from it at 53.

I remember the day she was diagnosed like it was yesterday. I was fortunate to have a rather privileged upbringing. We were by all accounts a relatively happy and healthy family.

Mom hadn’t been feeling well for a few months, but it was fairly non-specific. She had complained about back pain, itching and some trouble breathing. Her doctor had given her a puffer and brushed the rest off as ‘stress.’

One morning she woke up and she was yellow. In that moment we knew something more serious was going on. She had urgent testing done which revealed the need for an ERCP. We were told there was likely a blockage in her bile duct, but once it was removed she ‘should’ be ‘ok.’

I was scared but still believed everything would be fine. Mom was young and otherwise healthy. She was getting prompt medical care. They just needed to find the blockage and she would be back home with us in no time. The thought that it could be cancer never even crossed my mind.

I would give anything to go back to those days. To the time before I was scared that every diagnosis would be the ‘big one’. To a time where I genuinely believed everything would work out for the best. To a time when I thought my family would be together forever.

The blockage turned out to be a tumour in her pancreas, which we hoped would be benign. When it came back malignant we received the crushing statistics that every pancreatic cancer patient has to hear. The five year survival rate is virtually non-existent. Most patients don’t even make it a year.

Since she was so young, the doctors decided to try aggressive treatment. They attempted to shrink the tumour with chemo and radiation so that a whipple could be performed.

The ‘whipple’ is major and invasive surgery. It’s virtually the only chance at survival when dealing with pancreatic cancer, but most patients are too far advanced to qualify.

I went with my Dad to the hospital the day of Mom’s surgery. We were told it could be eight hours or longer, but that if they came out sooner it meant the cancer was too advanced to continue.

Sitting in that waiting room was one of the scariest experiences of my young life. Sure enough, about three to four hours in the surgeon came out to give us the bad news. They couldn’t remove the tumour. Mom was terminal.

They did what they could to alleviate the blockage in her bile duct so that she would be more comfortable and closed her up. Her only real chance at survival was gone, and we had to find a way to break the news to her.

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Looking back at that time in my life is painful. I was in a state of utter disbelief that I was going to lose my Mom. Intellectually I knew she was going to die, but emotionally I couldn’t fathom a world without her. It just didn’t make sense, and at 18 I wasn’t prepared to deal with it.

Once she came home from the hospital she sat me down to have a talk about what her diagnosis meant. I remember trying to be strong for her. Not wanting her to see how scared and sad I was because I didn’t want to make it harder for her to accept what was happening.

The thing is, she didn’t need me to be strong. Because she had been through this before. She lost her Dad to cancer when she was only 21, and her Mom to pancreatic cancer a few years later. She was intimately familiar with the pain of losing a parent.

She sat next to me on my bed and told me that she knew exactly what I was feeling because it was the same way she felt when her parents were sick. She knew how scared and angry I was because she went through the same emotions. She understood how unfair it was that she was being taken from me so young.

She didn’t want me to go through what she went through, but since she was powerless to stop it the best she could do was prepare me. So that’s what she did.

She told me she hated knowing that her girls were going to grow up without a mom. She wasn’t afraid of dying, but she was afraid of leaving us behind. Afraid that we weren’t prepared enough to face the world without her.

She was heartbroken that she would miss major milestones like graduations, marriages and grandchildren.

She wanted more time.

It broke my heart to hear her talk about all the milestones in her own life that her parents weren’t there for. I could hear the pain in her voice as she recounted the times she wished they had been there. As she told me how much they would have loved seeing me grow up.

All I wanted to do was provide her the comfort she was trying to provide me, so I offered to marry my high school boyfriend.

Yes I know it was silly, but grief makes you do silly things. In that moment all I could do was think of ways to help make sure she didn’t miss out on major events, and since I was 18 I figured I could technically get married.

Thankfully my Mom had better control over her grief and immediately nixed that idea. Instead she told me that more than anything she wanted me to be happy. She didn’t want me to ever feel pressured by someone else’s expectations or timetables. She wanted me to do what I wanted with my life.

Then she imparted one of the most poignant things anyone has ever said to me. She said it was her job to give me strong roots so that I could develop wings, and now it was my turn to fly.

She asked me to take care of my Dad and younger sister. She said she was sorry that so much was falling on my shoulders but that she had made me strong, compassionate and loving and knew I would get through it.

We seized the heck out of the last few months of her life. Her medical team moved mountains to keep her as comfortable as possible so that she could have an enjoyable final summer by our family pool which she loved so much.

We took lots of photos, shared stories and I tried to ask her all the questions I could think of. Stuff I would want to know in the future when she wouldn’t be around. Things I would want to be able to tell my younger sister or the next generation of our family.

I also purchased memory books for Mom to fill out, and I strongly encourage anyone facing terminal illness to consider doing this if they have the energy.

They’re books designed to help a person document their entire lives. You can add photos and memories, there are questions to answer, prompts to make you consider what kind of a legacy you want to leave behind and pages to write your own letters to your loved ones.

I cherish those books more than anything else I own. I’ve looked back at them hundreds of times during my life. They’ve answered tough questions, provided comfort in darkness, and brought me joy and laughter.

She also hand wrote letters to me, my sister and my Dad for us to open once she passed. The fact that she knew the pain of losing a parent meant that her letters touched on all the things I would need to know as I grew up.

They allowed me to hear her voice in my head when I was lonely. Get her encouragement when I was ready to give up. Her guidance when I was floundering. They gave me the greatest gift of all, they allowed me to keep her memory alive longer than I ever imagined possible.

Why am I telling you all of this? What does it have to do with RFK Jr and his recent funding cuts?

I’m telling you this because my Mom died nine months after diagnosis. She was only 48 years old.

She left me and my 14 year old sister behind.

We are the human cost of RFK Jr’s cruel cuts to vaccine and science research.

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Pancreatic cancer is quick and lethal. It’s almost always caught too late, and it’s rare for people to live more than a year from diagnosis.

Other than the whipple, which most don’t qualify for, there’s vanishingly few treatments.

There is an mRNA vaccine for pancreatic cancer in development. It’s been a beacon of hope for my family for years. And it’s in jeopardy because of these funding cuts.

The promise of a vaccine was hope for my family. For my sister and I who live with the fear of being diagnosed with this cancer ourselves. For all the families who’ve lost loved ones to this disease.

We are the human cost. The lives that could be saved and may not be because of funding cuts that don’t follow the science. That don’t prioritize medical advancements which save lives.

There’s no words for the rage I feel when I think about RFK Jr’s decision to cut funding for this life saving research.

His anti-vaxx grift has already killed and disabled many people. Measles is back and the US had its first pediatric measles death in over a decade. Covid is still with us and still killing and disabling people.

Now he’s effectively siding with cancer. He’s pushing harmful ‘wellness’ rhetoric at the expense of real research and scientific advancement.

He’s fired the entire CDC vaccine advisory committee. He’s restricted who can access the Covid vaccines. He’s sowed public distrust in vaccines that have all but eradicated many diseases.

The harm he is doing could take decades to undo, and it will be felt the world over. In this age of global travel, the decisions made by one country easily impact others.

Unvaccinated people will travel and cause public health threats in other parts of the world. RFK Jr’s anti-science rhetoric will spread beyond the US borders, causing people in other countries to forgo vaccination as well.

As for the life saving cancer research, my only hope is that other countries will pick up the slack. That private donors may step up to fund it, or that with enough public pressure RFK Jr reverses his stance.

It’s appalling that one man, who isn’t even a doctor or medical professional, should wield this much power over public health and science.

He’s unqualified. He’s malicious. He’s a grifter. And he’s going to kill people.

Please understand that these cuts come at a cost. Actual human lives lost. Hope taken away. People like myself and my sister left wondering if we will ever see a cure or effective treatment in our lifetime.

We deserve better than this. We deserve an HHS leader who actually believes in science. Who’s more interested in saving lives than lining his pockets.

We deserve leaders who promote life saving interventions, robust public health and cutting edge research.

We must all keep speaking out until we get the leadership we deserve. Until we get funding restored and rebuild faith in vaccines.

The longer he’s allowed to continue his anti-science grift, the harder it will be to undo the damage.

So get loud and stay loud. Get your boosters while you still can. Support non profits and organizations working to continue the important scientific research and public initiatives needed to save lives.

If you want to support pancreatic cancer research and awareness directly, consider donating to the Pancreatic Cancer Action Network.

Another way you can support people with terminal illness is by donating to your local hospital or palliative care programs. My Mom received the most incredible palliative care, and it helped my entire family process what was happening to her. These organizations (and the people who work within them) are vitally important to those suffering incurable diseases.

As always, I encourage you to tell your own stories. If you’ve lost a loved one or if you’ve encountered road blocks accessing needed vaccines or treatments, please share in the comments.

Together we can help the general public understand that we are not just numbers on a spreadsheet. We aren’t hypotheticals. These drastic cuts impact real people, and we need others to support us in the fight.

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That’s how little I knew about the reproductive system at the time, but boy did I learn in a hurry.

My periods were nothing like what was described in the book. They weren’t magical. I didn’t feel like I was ‘becoming a woman’. They weren’t easy, regular or ‘no big deal’.

They were a horror show. The bleeding was so heavy I frequently bled right through pads and stained my pants.

The pain so severe it felt like someone had lit a fire inside my belly and then constantly stuck me with knives.

There were days I couldn’t get off the floor due to the pain and fatigue. This was not the ‘period’ I was promised or the experience my friends were having.

I suffered like this for years while being assured by doctors it was ‘normal’ and told that I must have a low threshold for pain.

When I was 19 I was finally diagnosed with stage four endometriosis and adenomyosis, two conditions which can leave you with debilitating periods, blood loss, anemia and more.

I didn’t want children. I had never wanted children. I knew deep in my bones that motherhood wasn’t for me, so I asked for a hysterectomy. I didn’t want to suffer anymore.

That’s when I first began to learn about medical misogyny.

I was told ‘No’. Not because of the risks of surgery or the fact that it might not cure the endometriosis, but because I ‘might want kids’. I might ‘meet a man who wants kids’. I might not feel adoption was ‘good enough’.

I told my doctors that hypothetical future children weren’t worth this amount of suffering. My uterus was ruining my life. It was diseased, causing me severe pain and disabling me.

Even if I did want kids, my uterus had completely disabled me. There was absolutely no way I could care for them. With a hysterectomy, I could pursue other avenues like adoption, surrogacy or dating a man who already had children.

There were options that didn’t require me to keep a diseased organ inside my body.

Unfortunately none of those options were deemed ‘acceptable’ to the medical profession. They decided, without ever consulting me, that my destiny had to include biological children.

That if I had my uterus removed I would regret it and feel like less of a ‘woman’. They stripped me of my autonomy and my health without a second thought.

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This Is Medical Misogyny

Had I been a man, they would have given me the surgery the first time I asked. Men aren’t forced to keep organs they don’t want. They aren’t forced to make decisions based on what their future hypothetical wife or child might want. They don’t need their wives permission to have reproductive surgery. They aren’t told from an early age that fatherhood is the be all and end all.

It’s only women who are treated that way.

A hysterectomy would have drastically improved my quality of life. Instead I was forced to undergo six painful abdominal surgeries to try and control the spread of the disease.

I was left disabled and bedridden, yet the medical system continued to try and save my diseased uterus against my will.

There was no medical reason to keep it. You don’t need your uterus to survive, it’s only function is to be a womb. If you keep your ovaries you won’t even go into early menopause. Yet they made it clear that saving my womb was more important than my life.

In between surgeries I had to undergo iron infusions which are painful and caused extensive bruising and staining of my skin. When those failed to keep my hemoglobin stable, I had to endure blood transfusions.

Transfusions are not a benign medical intervention. They carry risk of transfusion reaction and risk of disease. They require large amounts of blood when we often have shortages. Yet I had to have them repeatedly because my ferritin was zero. I had absolutely no iron stores, and they still wouldn’t remove my uterus.

I was told that a hysterectomy wouldn’t be considered until I had tried every medication available to control the spread of the disease. I didn’t want to take any of them, but I was given no choice.

It was ‘take these increasingly strong hormone medications or we won’t operate’.

It started with continuous birth control pills designed to prevent me from having a period. They forced my body into a ‘pseudo pregnancy state’ for a year at a time.

When that didn’t work, I was given drugs to put me into chemical menopause at the tender age of 22. These drugs impact your bone density, your heart health and can have devastating effects on your sex life and mental health.

I was miserable and becoming more disabled, and still my womb came first. Drastic (and expensive) measures continued to be taken to save an organ I didn’t want and could survive without.

This went on for years. I sought second opinions and third opinions and fourth opinions. I consulted with male and female doctors. I got psychiatric clearance that I understood the risks of surgery and was competent to make up my own mind.

None of it mattered. I was repeatedly treated as second to a man and a baby who didn’t even exist. I was denied the autonomy to decide what I wanted for my body.

Eventually the bleeding became so severe they had to do the surgery as an emergency because I was dying in the ER. By that point I had a boyfriend, albeit we had only been together a few months and he had no legal standing to make decisions for me.

As they were wheeling me off for emergency and life saving surgery, they stopped to ask his permission.

They asked him if he was “ok” with my being unable to bear children. If he would leave me if I couldn’t procreate “for him”.

We hadn’t even said “I love you” yet and he was being given a say in whether or not I survived.

Needless to say he was enraged but told them to do what was necessary to save my life and leave him out of it. He understood that it was my body, my choice. If he ended up wanting children, we could have adopted. We could have used a surrogate. There were options.

Thankfully I survived the surgery, but in one final display of misogyny and disrespect, I was placed on the maternity ward for the first two days of post operative recovery. I had to be surrounded by new Moms and their babies after having my womb ripped out of me.

I didn’t want babies, but I still didn’t need to be surrounded by them when I was grieving the loss of my fertility. It was almost like the doctors were so angry that I ‘got my way’ that they wanted to punish me by placing me on the maternity floor. I couldn’t escape the misogyny and they seemed intent on showing me that my ‘womanly purpose’ was gone.

Once my uterus was removed, my quality of life returned. My anemia vanished and I was able to work and play and take care of myself again. I was no longer in daily pain and chained to a hospital bed. It was the best thing to ever happen to me.

Even some of the doctors who had denied me the right to choose remarked that I was a different person after the operation. Yet none of them said sorry. None said they were wrong. None expressed remorse for stealing years of my life in a futile attempt to save a womb I didn’t want.

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We Are More Than Our Ability To Bear Children

I think about what happened to me whenever I read about abortion rights being clawed back in the US. I’m in Canada and I wasn’t pregnant. If I was treated as second to my womb, what hope do American women have of coming first in states with strict bans?

The answer is… no hope. One need not look any further than the case of Adriana Smith, who was declared brain dead at nine weeks pregnant and kept on organ and tissue support without the consent of next of kin. The state turned her into an incubator due to an abortion ban.

Her case is particularly horrifying, but we must remember that many people, especially among the Christian right, see us exactly that way. We are vessels. Our sole purpose in life is to procreate. What we want for our own lives comes second to our husbands and babies even if they don’t exist yet.

We need true autonomy over our bodies. Medical misogyny has killed and harmed too many of us. We need the legal right to decide what is best for ourselves and that right needs to extend to our wombs.

A man would never be forced to keep a diseased organ inside his body if he didn’t want it. A man would never be told a hypothetical future wife comes before his own wants and needs. It’s subjugation, and it needs to end.

We must all fight for true bodily autonomy. For women like me. For women like Adriana. For the women in Georgia and Texas who’ve already lost their lives due to abortion bans. For our daughters, nieces and fellow travellers who deserve to be treated as people, not wombs.

We also need to call out the role that discrimination plays in these decisions. Had I been a woman of colour or visibly disabled, I likely would have had an easier time accessing sterilization.

Because it’s not just misogyny, it’s laced with ableism, eugenics and racism as well.

The people behind these abortion bans want the ‘right’ kinds of babies. They want white Christian babies. They don’t want disabled babies. Black babies. Indigenous babies.

This is why the government has no business legislating what we do with our bodies.

There’s An Exception for the Health of the Mother!

My experience with medical misogyny taught me that a large number of people in the medical profession don’t see women as people, they see us as wombs. They see us as ‘less than’ our male counterparts.

It was a painful lesson I had to learn at a very young age, but it also helped form my stance on abortion rights.

No one should have to go through what I went through, and yet it happens to women in every country in the world. I’ve spoken to thousands of people who’ve all been denied the right to choose what was best for their bodies, even when there was no fetus involved.

Which brings us back to abortion bans and the disingenuous argument the forced birth crowd like to make when we point out that pregnancy can be dangerous. “There are exceptions for the health or life of the mother.”

Sure, in theory these bans do have exceptions if the mother’s life is at risk. But we don’t live in theory, we live in reality.

I needed a hysterectomy, and countless doctors said ‘No’. They put my non existent and hypothetical fetus ahead of my health and my life.

If they say ‘No’ under those circumstances, are we really supposed to trust them to risk criminal prosecution and jail time to save a pregnant woman? Of course not. They’re going to prioritize the life of the fetus. They’re going to put the woman second.

That’s why maternal mortality is so much higher in states with strict abortion bans. Misogyny is everywhere, and it isn’t easy to overcome.

Even the good doctors who believe women should be allowed to decide what’s best for their body may fail to save the mother’s life when there’s an abortion ban.

Why? The law is incredibly vague. It states that healthcare workers can terminate a pregnancy when the life of the mother is in imminent danger.

Who decides what counts as imminent danger? I was in imminent danger for at least a few weeks before my hysterectomy. I very nearly died. I was still denied care until I was actually at death’s door. By the time I went for surgery I only had a 50/50 chance of survival.

People who are pregnant decompensate fast. The human body is pretty amazing. It can hang on for longer than you might realize.

A doctor may know that a patient is septic, bleeding out, or losing their pregnancy… but unless their vitals are so bad that death would be considered imminent, the doctor will hesitate to act. The legal teams at the hospitals will tell them to wait until there’s no question that the woman is about to die.

The problem with waiting that long is you’re rolling the dice with our lives. Once it’s clear we are about to die, you may not be able to save us.

You’re forcing us to undergo unnecessary trauma and health risks just to ensure you don’t run afoul of the law. And the worst part is that lawmakers know this is happening. In fact, they’re counting on it. It’s why these abortion bans are written in such an ambiguous way.

Once it’s clear that a pregnant woman is about to die, I’m sure heroic measures are taken. I’m sure the doctors and nurses pull out all the stops to try and save her life. But why should it ever be allowed to get to that point?

Why can’t they intervene when we have a 99% chance of survival, instead of waiting until our odds have drastically dwindled?

Because of abortion bans. They are preventing healthcare workers from acting in the best interests of their patient. They’re insisting the life of the fetus be put above the life of the mother. Even when the fetus has no chance of survival or miscarriage has already happened, doctors still fear criminal prosecution for intervening.

Where Do We Go From Here?

To start, we have to admit the truth about these laws. They were not designed to protect life. They weren’t designed to protect women or children.

They were designed to control us. To further a white Christian nationalist agenda that seeks to ‘encourage’ women to procreate at all costs. Whether you want a child or not, whether you can support one or not, whether you will survive pregnancy or not.

Misogyny is too pervasive to think these laws will ever be applied fairly. To think that the ‘exceptions’ will ever be anything more than window dressing.

If I couldn’t have my womb removed when there was no fetus to consider, imagine the struggles pregnant people are going to face.

In my humble opinion, it’s no longer safe to get pregnant in any state with a strict abortion ban. I would argue pregnancy isn’t safe in the United States at all.

It’s time we start thinking long and hard about whether it’s worth the risk, and continue to fight for true reproductive freedom for all.

That means full control over our bodies, whether that be access to a tubal ligation or hysterectomy, abortion, or emergency medical care for pregnancy related complications.

In the meantime, I strongly suggest women stop discussing their pregnancies (or their plans to become pregnant) online.

Stop using period trackers. Don’t research abortion online if it can be avoided.

Keep as much of your reproductive related information to yourself. It could save your life.

Lastly, support the fight for reproductive freedom. Follow and amplify independent journalists who are dedicated to getting the message out. People like who are doing excellent reporting day in and day out.

Support Planned Parenthood and local state abortion funds. Donate to the legal defence funds of women who are arrested for miscarrying or for pregnancy loss.

There’s lots of ways you can help, but it starts with recognizing there is a significant problem and then committing to advocating for change.

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The Trump administration has decided that cutting taxes for billionaires and increasing funding for ICE are higher priority items than ensuring the most vulnerable have access to healthcare and food assistance.

The cuts are expected to leave 12 million people without medical care, many of whom are part of the disability community. In fact, more than 1 in 3 people with disabilities rely on Medicaid. 1

This bill will cost disabled lives. It’s appalling that the government has decided that healthcare is the place to create savings, but it’s not surprising. Disabled people have always been seen as expendable, and it will only get worse under fascism.

Our lives are not valued. We’re considered ‘useless eaters’. People who take tax dollars without giving anything back.

It’s a narrative as old as time, but it’s one the Trump regime are relying on to justify the cuts. They’re counting on society’s general disdain for disabled people and their own internalized ableism to prevent them from seeing what this bill really is… eugenics in action.

To distract from their cruelty, Republicans have been saying that these cuts won’t impact the ‘genuinely’ disabled. Only those ‘able bodied’ people taking Medicaid and sitting around playing video games.

There’s no such thing as the ‘genuinely’ disabled. This is a trope designed to make society doubt that we’re really sick. To make them see us as fakers, scammers, malingers or worse.

To hear these folks talk about disabled lives you would think that when disability occurs you get an official placard recognizing you as one of the ‘real’ ones. They act like it’s that black and white.

The reality is that most disability occurs in the grey. Many disabilities are invisible. Chronic illnesses can be very hard to diagnose. Lots of people can’t accept that they’re disabled and/or can’t access the medical care they need to get a proper diagnosis.

There are so many barriers to diagnosis and care that people die waiting for social support and healthcare. They’re still disabled, it was just never made ‘official’.

People Don’t Fake Disability, They Fake Being Well

There are far more disabled people pretending to be well than there are pretending to be sick. Being on disability is not fun. You’re forced into legislated poverty. Treated like a “useless eater”. Shunned, abandoned and constantly questioned.

It can be incredibly dehumanizing.

The process to be approved for social supports is arduous and lengthy. Once approved you have to constantly re-prove that you’re still disabled. It is punitive by design. They want to dissuade people from even attempting to get support.

Many of us with invisible illnesses go to great lengths to hide them. We pretend to be “fine”. We push our bodies to the breaking point. Why? Because we know how ableist our society is. We know we will be treated better if people see us as “normal”.

It took me years to admit I was disabled, and even longer to publicly identify as such. I’m now proud of my disabilities. I’m proud of myself for being authentic and fighting for my rights and the rights of people like me. But going public cost me.

I lost friends and family. I lost followers. I lost the respect of people I thought cared about me and valued me as a person. I got a painful lesson in just how much society hates disabled people, and that lesson is ongoing.

People told me I was stealing their “joy”. That they “don’t do sick”. That they missed the old me. They demanded that I go back to hiding it. That I do a better job of faking being well for their comfort. When I didn’t, they walked away.

The more outspoken I’ve become the more people have disappeared. The more The Disabled Ginger grew, the less I heard from the few friends I had left. People cut ties for no other reason than they didn’t want a disabled friend. They didn’t want to deal with it.

Disability is not a choice. I miss the old me too, but this is my reality now. I’m proud of who I’ve become, but I am suffering. I’m exhausted and in pain every day. I can’t do most of the things that used to come naturally to me. I’m dependent on caregivers.

I didn’t consent to this. No one asked me if I would like to live this way. None of us get a choice, and disability will happen to most people eventually.

After enduring the loss of friends, family, dignity, respect and personal freedom…I now have to deal with society saying most of us are faking.

I now have to fight for disabled people to keep the bare minimum support they’re given because people are convinced we’re scammers.

I’m exhausted. We’re all exhausted. Being disabled is a 24/7 job. There’s no breaks. No vacation. No raises. No one would do this for the “perks” because there aren’t any. This is not a system worth scamming.

We deserve good healthcare, housing and an affordable living wage. We don’t get that.

What we do get is barely enough to survive, and now people want to take that away too. They want us to “prove we matter”. They want us to demonstrate we have value and they’ve unilaterally decided that value must come from work.

Screw that. We all matter. Our worth shouldn’t be dependent on our job, health or the size of our bank account.

Many people can’t work, and that’s ok. You don’t have to work to have value. Many can’t volunteer, and that’s ok too.

We all have intrinsic value just by being who we are, and those with disabilities deserve care and support.

The US government has decided that most people on Medicaid can work, so they’re going to force the issue. They assume this will weed out the ‘genuinely’ disabled and find all those ‘scammers’.

They’re wrong. All this is going to do is result in a lot of suffering, disability and death. People can’t suddenly be capable of work just because you threaten them with loss of healthcare or food assistance. They can’t suddenly be less disabled just because you don’t want to provide support.

These budget cuts will kill people, and the majority of those people will be disabled. Genuinely.

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They Can Just Apply for An Exemption!

They shouldn’t have to apply for a medical exemption, they’re already on Medicaid. They’ve already been approved.

The medical exemption to avoid the work requirement is designed to do the opposite of what it claims.

It’s designed to strip more people of their healthcare .

Not the ‘scammers’ either, it’s designed to kick off disabled people.

How do I know this? Because disabled people struggle with paperwork. Red tape is difficult for us. Many of us live in poverty and can’t afford the doctors appointments required to get forms filled out.

The people implementing the new work requirement know this as well. They know that many people never get on SSI or Medicaid because they can’t get through the punishing application process.

If they add in additional layers of paperwork and hoops for people to jump through, many will simply let their coverage lapse because they are financially, mentally or physically incapable of providing the documentation required.

The cruelty is the point.

Being unable to jump through punitive hoops should be further proof that someone is disabled, but instead it will be used to deride them as ‘fakes’ who never should have received benefits in the first place.

They will be informed they must work or lose their benefits, and since they will be unable to work, the government will be able to strip them of their healthcare.

This is how they’re choosing to save money. By punishing the weakest and most vulnerable among us and convincing the general public that it’s a good thing because those people were stealing from them in the first place.

It’s eugenics, and the sooner people realize that and help us fight back the better.

If you think I’m being hyperbolic, consider the fact that the Secretary of Agriculture recently held a press conference where she was asked if there would be amnesty for farm workers with respect to immigration policies.

Many farm workers are undocumented immigrants, and there are concerns about food shortages because they’re being detained and deported in large numbers.

The concerns are valid. These are difficult jobs involving intense physical labour for often sub minimum wage. Most Americans don’t want to do that type of work, which is why immigrants are the ones ensuring that food ends up on our tables.

When asked about amnesty, Brooke Rollins stated that it wouldn’t be needed because the 34 million ‘able bodied’ people currently on Medicaid can take those jobs instead.

That’s right, the plan to avoid compromising the food supply is to force disabled Americans to work hard labour jobs. Jobs they will be physically unable to do. Jobs that will kill them.

They claim this is because they want a “100% American workforce”, but in reality it’s a perfect two for one extermination plan.

They get to deport immigrants and punish the disabled at the same time:

Healthcare Is A Human Right

The US is one of the only developed countries that doesn’t give its citizens healthcare as a basic human right.

That’s the real reason they have one of the unhealthiest populations. It isn’t the red food dye or vaccines. It isn’t the fact that they don’t drink raw milk or ‘wellness’ hard enough.

It’s the fact that people can’t access preventative healthcare. In many cases they can’t access any healthcare without risking bankruptcy or financial ruin.

This leads them to delay or avoid care altogether, which makes for a lot of chronic illness.

Rather than fix the issue and ensure healthcare for all, the government would rather kick millions of people off whatever medical care they’re currently able to receive. They would rather you believe that your tax dollars are going to ‘scammers’ then to genuine people who need help and support.

Here’s a radical thought… what if we agreed that everyone should get care regardless of ‘how disabled’ they are? Regardless of the colour of their skin, the size of their bank account or their job? What if we said that even the so called ‘scammers’ should still be able to access medical care because healthcare is a human right?

If we did this, we would actually save money. The system for approving SSI and Medicaid in its current form is so drawn out and punitive that it costs a ton to implement.

Investigating and harassing disabled people who need benefits isn’t free. They need insurance agents, investigators and lawyers. They need paper pushers and people to man the phone lines. They need to employ people to catch these ‘scammers’.

Those people cost money, and I guarantee you it’s far more than what’s being spent on the odd person who manages to ‘trick’ their way into medical benefits.

You know how I know this? It’s almost impossible to scam your way onto Medicaid.

If fraud and abuse is occurring, it’s at the corporate level, not the individual level. People on Medicaid are not sent a cheque every month, they’re simply given healthcare. It’s up to the hospitals and clinics to disburse the Medicaid funds. Perhaps the government should look there for the ‘waste, fraud and abuse’.

Regardless of whether there actually IS any fraud, the fact remains that all people need and deserve medical care and a decent compassionate society recognizes this.

The US needs to keep up or be left behind. It’s long past time they give their citizens healthcare instead of wasting time and energy debating who’s ‘deserving’ of access.

And please, stop saying the ‘genuinely disabled’ don’t have to worry.

We are all worried, we are all genuine, and we need your solidarity now more than ever. Don’t take away our healthcare and social supports. Don’t leave us by the wayside.

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If you’re struggling with Long Covid, wrote an excellent article about the proposed Medicaid cuts and how they impact the Long Covid community in particular:

The Gauntlet

Long COVID patients among those likely to be targeted under new Medicaid work requirements

Last week, Donald Trump signed his so-called Big Beautiful Bill, officially condemning millions of the most vulnerable Americans to lose their health insurance, handing an eye-popping budget to ICE, and of course, providing another tax break to the ultra-wealthy…

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10 months ago · 85 likes · 13 comments · Julia Doubleday

As a result, our lives tend to be put at risk from situations that a non disabled person might find a mere inconvenience.

When you’re chronically ill, you lack physical resilience. Being sick day in and day out takes a tremendous toll on the body and makes it much harder to endure any setback or upset to your regular routine.

We also tend to be forced to live in legislated poverty, which drastically reduces options for emergency preparedness planning, prepping or contingencies.

In short, those with the least are the ones who tend to suffer the most.

Poverty and disability make terrible bedfellows, and yet all too often they go together. The combination can be deadly.

Despite these obvious facts, society tends not to factor us in to emergency planning. They tend to forget about us when disasters occur. They leave us behind.

Two weeks ago, much of the United States and Canada was blanketed by a ‘heat dome’ causing temps to hit ‘wet bulb limits’.

There’s been a lot of media coverage of the dangers of wet bulb temps and how to protect yourself, but just like the wildfire coverage that we saw a month before, there’s been almost no attention given to how to protect disabled lives.

Because we’re expendable. We’ve been forgotten. Left by the wayside and considered acceptable losses.

This article will attempt to shine some light on the unique struggles these events pose to disabled people, as well as how we can help keep each other safe.

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The Heat Dome

There’s been a lot of talk about the heat dome that blanketed much of the US and Canada. It brought with it ‘wet bulb temperatures’, which refer to a temperature at which the human body can no longer cool itself:

At theoretical wet-bulb temperatures, evaporation and cooling can no longer take place because the atmosphere is fully saturated with water. And when the wet-bulb temperature reaches 35 C, it crosses a threshold at which humans can no longer lose internal body heat and cool themselves 1

These temperatures are dangerous to everyone, but those with disabilities, the elderly and young children face a higher risk of adverse events.

Many of us living with chronic illness struggle to regulate our internal temperature. Whether that be because of conditions like Dysautonomia (which I have), frequent infections, paralysis or lack of climate control, most of us find it very hard to keep our bodies regulated, safe and comfortable.

My baseline takes a hit whenever I become too hot or too cold, and because POTS causes my body to be unable to sweat properly, extreme heat can turn deadly in a hurry.

Living in poverty means many disabled people don’t have access to comfort measures like air conditioning or fans. They may be living in apartments on high floors which are known to get extraordinarily hot. They may be in shelters or shared accommodations where they have no control over the temperature.

In short, we often lose agency when we’re disabled and poor, and with the loss of agency comes a lack of safety.

We desperately need our community to show up for us. We need radical community care to survive extreme weather events.

Things We Can Do To Keep Ourselves Safe:

• Stay hydrated! This is number one. Many of us don’t consume enough water and electrolytes, and in extreme heat this becomes even more important. Slow sips of water throughout the day can work better than gulping. Consider trying electrolytes or an oral rehydration solution. You want to be replacing important minerals like sodium and potassium. I use Nuun but there’s many good options available!

• Plan in advance whenever possible, especially if you don’t have AC. Make sure to stock up on water and ice. Fill empty water bottles that you can freeze to place in front of a fan. Freeze towels that you can put on your neck to cool down. I have a few 4L jugs of water that I keep frozen at all times. If it gets too hot I put two of them in front of a fan and it helps a lot.

• Consider cooling vests or cooling mats. They even make them for pets and I find that a mat for a large sized dog is perfect for putting on a couch or bed to cool me down!

• Get as many fans as you can afford. Ceiling fans are great if you live somewhere that will allow you to install them.

• Get room darkening blinds/curtains and keep them closed when it’s extra hot.

• Try a dehumidifer. Depending on where you live the humidity may be a bigger problem than the heat (it often is for me). The ideal humidity for a home is between 40-60%.

• When purchasing a dehumidifer make sure you pay attention to the size of the water reservoir. I can’t lift or empty mine on my own, so I bought one with a hose attachment so it can auto drain into the sink.

• Make sure you have a safety buddy, especially if you live alone. Have someone who will check on you and make sure you’re doing ok. The last thing you want is to pass out in the heat and have no one know it’s happened.

• If you can tolerate it, try cold showers, cool baths and/or placing your feet in cold water. You can also try a cold towel around your feet or in your armpits/groin or back of the neck.

• Try and make sure your freezer is well stocked. Having the extra frozen water bottles gives me options for cooling, but also protects my food in the event of a power outage. A well stocked freezer will stay cold longer than a half empty one. If you have a ton of ice you can also place some in the fridge during an outage to try and avoid food spoilage.

• If you can get an AC unit, do it. Don’t feel guilty. Try not to wait until a heat wave as they will be expensive or possibly sold out. Many of us are dealing with disabilities that make heat extra dangerous. We’re on medications that lower our tolerance for the heat. Consider AC an important accommodation, not a luxury.

• On the topic of AC units, be wary of evaporative coolers. They can be deceptively marketed as portable AC but aren’t. They’re essentially similar to putting ice packs in front of a fan, and they add humidity to a room. They will only cool effectively in dry climates and they’re a known source of mold.

• If you have a choice between a window AC or portable one, window units tend to be quieter and much more effective. Some buildings have banned them so be sure to check with your property management or landlord.

• If getting a portable unit, look for dual hose options as they are more effective (but can be more expensive).

• Talk to your pharmacist about medication risks. Lots of medications increase your odds of having heat stroke, so it’s important to know if you need to adjust dosages or take any special precautions.

• Conserve your energy. Heat waves are a time to rest. If at all possible, rest as much as you can. Lay in a cool dark room. Eat smaller, lighter meals more frequently. Don’t over exert and don’t feel guilty for taking care of yourself.

Things Our Community Can Do For Us:

Surviving heat domes and other extreme weather events is very much a community effort. Many disabled people live alone and have limited support. They need extra help when emergencies happen.

The good news is there’s a lot of things you can do to help protect the most vulnerable.

• First things first, check on the disabled person in your life. Check in early and often. Ask how you can help. Knowing someone is concerned for us and offering assistance can make a world of difference.

• Donate to crowd funding and mutual aid requests for AC. Many of us are on an extremely fixed income and can’t afford to just go buy an AC unit when it gets hot. Help by boosting and/or donating if able.

• You can also donate AC units directly to people in need if you have the funds or an old unit that you’re no longer using.

• Offer rides to cooling centres. I can’t stress this enough. Cooling centres are a great option but inaccessible to many of us. I don’t drive or have access to a car. The effort it would take to get to a cooling centre would negate any positive benefits from being there.

• Drop off groceries or home cooked meals. Cooking in extreme heat can be dangerous and having access to ready made meals can help ensure we stay fed.

• Lobby local governments to provide for those in need. This can mean opening more cooling centres, providing outreach to those who are unhoused, providing access to water and food etc. We will only see more extreme heat events as climate change worsens, try and make sure your city has a plan to deal with them.

• Lobby governments to set maximum internal temperature bylaws. Many cities have a bylaw for heat which ensures that landlords must maintain a comfortable temperature in winter. There’s no reason we shouldn’t have a similar bylaw for AC. When you’re renting you’re often at the mercy of your landlord with respect to air conditioning. If it breaks they might not repair it, and some will lock the thermostat. A bylaw would help ensure landlords can’t take advantage of their tenants.

• Help grassroots organizations who are fighting climate change. Many parts of the world that never needed AC in the past are finding they require it now. Temperatures are rising, and it puts our lives in jeopardy. We have to address climate change before it’s too late.

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Wildfires and Air Quality Issues

With extreme heat we often see a reduction in air quality. The last few years have been particularly bad as wildfires start earlier in the season and rage much longer than ever before.

As with heat, poor air quality tends to impact disabled people more severely than others.

This is especially true if you have any heart and lung issues, asthma, allergies or anything that impacts your breathing.

Even if you can’t feel or smell how bad the air is, it can still do a tremendous amount of damage. The fine particulates caused by wildfire smoke nestle in your throat, nose and lungs and wreak havoc.

The smoke also mixes with pollutants in the environment to create harmful VOCs (volatile organic compounds). These are carcinogens that can cause all kinds of health issues. For people with MCAS (Mast Cell Activation Syndrome), VOCs are often more harmful than particulate matter. That’s certainly been my experience. They’re also harder to mitigate.

That said, there are many ways you can improve your indoor air quality and protect yourself when you have to go outside.

First things first, if you must be outside when the air quality is bad, get yourself a well fitted respirator like an N95. They’re not just for Covid! A respirator is designed to filter out pollution and smoke, and is an excellent health tool during wildfire season.

If you’ve got questions about how to choose a respirator, where to find them and how to fit test them, my article below has you covered:

So a respirator is your best tool when you have to be outside, but what can you do about your indoor air?

The good news is that since the beginning of the Covid pandemic there’s been an increase in people invested in clean indoor air. It’s become a movement, so there’s a lot of fantastic information and resources to help you maximize the health of your home.

My Top Tips for Improving Indoor Air Quality

• Corsi Rosenthal boxes (or DIY air purifiers) should be your new best friend. There’s tons of air purifiers you can buy commercially, but the DIY models are cheaper and clear the air at a much faster rate. You can have fun with them and make them suit your space. Check out this awesome site for creative ideas for young kids and classrooms.

• For step by step instructions to make your own filter, check out Clean Air Crew’s website here.

• If possible, try and assess your indoor air with a PM and/or VOC monitor. What’s that? PMs stand for Particulate Matter. They’re the mix of solid particles and liquid droplets in the air. It could be from smoke, pollution, pollen, viruses and more. If you know how bad your PMs are, it can help you assess how much filtration you need. VOCs stand for Volatile Organic Compounds. They’re carcinogenic chemicals that can also be in the air.

• If you’re going to buy air filters, pay attention to the Clean Air Delivery Rate. Some very expensive filters have shockingly poor performance. You want one that will maximize the number of air changes you get per hour.

• Assess the size of your home (or the room you need to clean) and get one that will give you between 6-12 air changes per hour. The more the better in my experience!

• If you have your own furnace or HVAC system, consider upgrading your filter to a higher MERV rating. This will also assist with cleaning the air. Make sure to check and ensure the system can handle the additional resistance that comes with a heavier filter.

• Try newer technology! Clean air has come a long way since the start of the Covid pandemic, and lots of neat options are coming out all the time. I recently had the chance to try out a Laminar filter, which delivers a steady stream of filtered air right to your face. It’s great for use in hospitals to avoid Covid, but when the wildfires were raging I also found it helped supplement my regular filters at home. There’s an open source build guide online for anyone who wants to try and DIY. For a commercially available option, try the AirFanta.

• When the outdoor air is good, open up your windows and turn on exhaust fans. Ventilation is key to healthy indoor air.

• VOCs won’t be mitigated with standard air purifiers or HEPA filters. They need large amounts of carbon. It’s best to try and eliminate VOCs at the source and avoid using harsh chemicals or any products that generate them. If that’s not an option, air purifiers with large amounts of carbon and/or bags of activated charcoal can help.

• Don’t forget you can wear a respirator indoors! On really bad air quality days, this is what I do. A well fitted N95 will keep most airborne particles out of your lungs! If VOCs are a concern, you can get a P100 mask with gas filters.

• If you have a green thumb, plants can also help improve indoor air quality.

• Watch humidity levels. I mentioned the importance of a dehumidifer for coping with extreme heat and humidity, but it’s also important for deterring mold growth. Mold is a major contributor to poor indoor air.

• Seal your windows and doors with weather stripping to prevent leakage.

No Matter What, Don’t Leave Disabled People Behind

I’m seeing a concerning trend towards people saying that folks should ‘just move’ and/or giving extensive prepping advice that is completely inaccessible to most disabled individuals.

While a lot of this advice is helpful, it leaves us behind. It fails to consider the unique struggles of the disability community as well as the role poverty plays in contingency planning.

There is absolutely nothing wrong with prepping, in fact it’s something most people should probably do if they’re able.

The problem with suggesting this advice to the disability community is that most of us are living in extreme poverty without the financial means, space or physical ability to prep.

Many of us are on special diets that eliminate things like canned and dried goods. We don’t have excess fridge and freezer space. We’re relying on delivery services to bring our groceries so ‘stocking up’ would be financially punitive.

We also can’t ‘just move’. Not only does moving require money and health that many of us don’t have, we’re also highly reliant on our medical teams. When you move you have to start over, and for many of us the time it would take to find new doctors and establish new relationships would be insurmountable.

What we need more than anything is robust community care. We need to build networks of people who will watch out for and protect one another. Rugged individualism isn’t going to work for anyone, but it especially won’t work for the disabled.

We need to start thinking as a collective. How can we set up community gardens, fridges and libraries? How can we create housing that is sustainable and affordable where neighbours will check on one another? How can we ensure the most vulnerable among us can continue to access medications and healthcare as things fall apart?

There aren’t any easy answers, but I hope we can start having the conversation. I hope we can start to build a future where disabled people will be prioritized and protected during extreme weather events, collapse and anything else the world throws at us.

If you plan to care for the vulnerable, everyone else will be better off as well. We will all survive and thrive together.

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It is one of the most frustrating reactions to hear, because it’s generally well intentioned. People who suggest we complain believe a complaint will change things. That we will get justice. That our care will improve.

Unfortunately most disabled people know that’s not the case. We know what it’s like to have to rely on a system entrenched in ableism for survival. We understand the risk of retaliation if we complain. We are painfully aware of the power imbalance. We have good reasons to hesitate to lodge a complaint.

This article intends to address those reasons. It’s going to strip back the ‘why’ behind patients who are hesitant to lodge complaints. I want it to showcase the reasons we have for hesitating, and dispel any myth that we’re lazy or don’t care about the patients who come after us.

I want to help people see that the healthcare system is broken, and in many ways it’s more broken when you’re disabled and chronically ill. If people can understand the tremendous barriers we face to adequate care, perhaps they will join us in finding solutions. They will stop blaming us for not ‘trying hard enough’ and realize that we are being failed by a system that has all but given up on us.

“Just File A Complaint”

The complaint process does not work the way you think it does, but perhaps it is working as intended. Unfortunately ‘as intended’ benefits the system and those who work within it, and not the patients. It discourages people from complaining in the first place, thus reducing the amount of time, money and energy the healthcare system has to spend dealing with serious issues.

Uncomfortable truth time, disabled and marginalized patients are frequently mistreated in hospital settings. We suffer medical trauma, abuse, gaslighting, misdiagnosis and more.

If you’ve never had to rely on the system on a regular basis, your perception of it is likely very different than ours.

When you’re non-disabled, you have the illusion that hospitals will make you ‘all better’ if something ever goes wrong. You have an expectation that if you go to the ER, you will be quickly diagnosed, treated and ‘fixed’.

When you become chronically ill, that illusion is shattered. You learn that the hospital is not a safe place, and that when you’re mistreated your options for rectifying the situation are few and far between.

There are many reasons for this:

• Complex chronic illnesses are not well understood by many healthcare workers.

• Our healthcare system is designed to treat acute and life threatening conditions. If you’ve broken a bone or require emergency surgery? They will likely do an excellent job. If you’ve got a myriad of symptoms from complex disabilities or invisible illness? They aren’t as well equipped to handle that.

• Bias is rampant in hospitals. We want to believe they’re above it, but every disabled patient has a story of being impacted by the bias of a healthcare worker.

• Ableism, discrimination, racism and misogyny all exist in healthcare settings. The more marginalized you are, the more barriers to care.

• Hospitals often protect their own. An extreme example of this is the case of Dr. Christopher Dunstch, a neurosurgeon who was killing and maiming patients. Many complaints were lodged, including to the Texas State Medical Board, but he was just moved from hospital to hospital and allowed to continue harming patients until law enforcement stepped in.

• There’s an imbalance of power. This is perhaps the biggest reason for the complaint process not working. The inequality between doctor and patient is too significant. We aren’t treated as partners in our care, we’re treated as less than. To be seen and not heard. They want ‘compliant’ patients, and when you lodge complaints, you’re not compliant.

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The Power Imbalance and How it Impacts Patient Care

I spent most of my teens and twenties in and out of emergency rooms. I had stage four endometriosis and a host of other health issues, and I learned very quickly just how dangerous hospitals can be.

People like me avoid the ER at all costs, which means that when we are able to see a specialist there’s a huge imbalance of power. We desperately need their help, we’ve often waited months or years for the appointment, we don’t want to rock the boat.

Unfortunately, the boat is often rocking no matter what we do. Our strained healthcare system has caused appointments to be rushed, doctors to be overworked and bias to run rampant. We don’t have enough healthcare workers, and the ones we do have are not well versed in complex chronic illness.

The result is patients get mistreated. Dismissed. Blamed. Ignored. Harmed.

When you say “just walk out” or “just file a complaint” you’re failing to take into consideration the huge barriers to care we face (and the risk of retaliation).

I don’t write this to discourage anyone from filing a complaint if they’re mistreated. I do it to level set expectations so people can decide how to spend their precious energy.

If you have complex chronic illness and need a specialist, good luck. Every country is unique, but in Canada it can take over a year to get in with a specialist and you get no say in who you see. If you don’t like them? They treat you badly? You have to start the waiting game all over again.

Many of us can’t wait that long. ‘Second opinions’ don’t work in a system with wait times in excess of eighteen months. Your leverage is gone before you even start, and the people treating you know it.

There’s also a devastating lack of specialists trained and/or willing to treat many complex chronic illnesses. These conditions are on the rise (thanks in part to unmitigated Covid spread) meaning there are more and more patients trying to access fewer doctors.

This leads to a lot of unnecessary suffering. Patients waiting years for a diagnosis, if they can get one at all.

When the deck is this stacked against you, it’s normal to feel desperate. None of us should have to beg for care and yet that’s often what it resorts to. Lodging official complaints can easily land you with a note in your chart about how you’re a ‘difficult’ patient, which only makes it harder to find care in the future.

Doctors can and do refuse referrals if the patient is known to be difficult, time consuming or ‘non compliant’.

In many ways, the system protects its own. Many of the ‘protections’ that exist for patients are simply window dressing. Anyone who’s gone through Patient Relations to try and rectify a concern will tell you how ineffective they are.

You will more often than not receive a form letter response implying that you ‘misunderstood’ or advising you that Patient Relations doesn’t deal with that particular issue.

It’s exceedingly rare to receive an apology, or even an acknowledgement that a problem occurred, let alone have any steps taken to ensure it doesn’t happen again.

That’s not to say there aren’t excellent doctors out there, of course there are. I’m incredibly grateful to my current team who’ve treated me with dignity and respect and tried to help increase quality of life.

But the negative experiences caused tremendous harm, and I didn’t find my current team until I was nearly forty. That’s decades lost to improper or negligent care. To misdiagnosis and gaslighting. To medical trauma that didn’t need to happen.

When You Wait Two Years for Help, Would You Risk Complaining?

Many years ago, I found myself in an incredibly unfortunate medical conundrum. I had been having significant health issues that no one could figure out. I saw multiple specialists all of whom believed something was wrong, but couldn’t put their finger on it. I was finally referred to ‘the specialist’ who I was told would be my ‘best chance’.

Unfortunately this person had a wait list of almost two years. That was two more years of suffering in silence. Trying desperately to avoid the ER when my mystery symptoms flared up. Of missing out on work and life because I was sick with no answers or support.

The night before my appointment I had extreme abdominal pain and bleeding. I didn’t want to go to the ER because I was worried it would make me miss my appointment, but eventually the pain became too severe and I had to seek urgent medical attention.

I had a massive cyst rupture, with a second grapefruit sized cyst still intact on my ovary. My abdomen was full of fluid and I needed large doses of pain meds to control my discomfort. My blood pressure was dangerously low so the ER was running IV fluids in an attempt to raise it.

It was 3am by the time I was stable enough to remember (in a moment of panic) that I had an appointment in a matter of hours. I asked the doctor if he believed I could get there in time, and he looked at me like it was the most nonsensical question he had ever been asked.

He told me firmly that I was not stable enough for discharge and would have to reschedule the appointment. I pleaded with him to let me go and explained that I had been waiting what felt like an eternity, but he wasn’t budging.

When the specialist’s office opened at 8am, I called right away. I explained that I was in the ER having a medical emergency and wasn’t able to make my appointment. The reaction I got shocked me:

“We don’t accept same day cancellations. If you’re unable to make it you will have to wait another year.”

I was crushed. There was no way I could wait another year to be seen, but I was also confined to a hospital bed hooked up to heart monitoring and multiple IVs. I was stuck.

The ER doctor came back to find me sobbing and begging the nurse to unhook me from the monitors. When I told him what happened, he offered to call the specialist’s office on my behalf and make it clear they weren’t ready to discharge me. He was one of the good ones.

Unfortunately they were no more amenable to rescheduling my appointment when he spoke to them. They insisted that the specialist was ‘very busy’ and I either had to find a way to get there or accept the significant delay in care.

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The Sad Reality of Living with Complex Chronic Illness

Welcome to life with complex chronic illness and/or rare diseases. The power imbalance that has always existed in healthcare is significantly more noticeable when you are a ‘rare’ patient.

There are less doctors willing and able to treat you, so the few who are available hold all the cards. Intentionally or not, it can lead to people taking advantage of how ‘stuck’ rare and complex patients are.

Thankfully the ER doctor was one of the good doctors. The ones who listen and empathize. The ones who let you be an active participant in your care. Who know that you’re the expert in your own body and should be included in all decision making.

He came into the room, sat bedside and asked me what I wanted to do.

Doctors, please take note of how much a simple act like this means to your patient. He sat beside me and treated me like an equal. He opened up the lines of communication. He wasn’t standing over me, rushing or talking down to me.

I told him that I could understand his reluctance to discharge me but that there was no way I could wait another year for answers. I asked him what we could do to buff me up and get me ‘safe enough’ to get to the appointment.

I acknowledged that they weren’t going to get me to a point where I was ‘safe’ or ‘better’, but that I was willing to accept the risk if we could make me stable enough to get through the specialist appointment and return to the ER.

He agreed to stop the pain meds and run extra IV fluids to raise my pressure. He called the hospital where my specialist was and arranged for someone to meet me at the door with a wheelchair. He gave me a voucher to pay for the taxi to take me across the street.

We made a deal that I would return to the ER after my appointment and go back on the heart monitor until I was properly stabilized, and I headed over to my appointment.

I was greeted by a very kind volunteer who seemed taken aback by how disheveled and pale I was, and she asked me if I was ‘ok’.

I did something unimaginable in that moment, I told her the truth. I refused to say my default ‘I’m fine’.

I told her I wasn’t ok. That I was in terrible pain and had spent all night in the ER but the clinic wouldn’t reschedule me. She looked at me with kind eyes and told me she was sorry and would try and help.

She took me to the office and checked in for me so I didn’t have to speak or stand at the desk. She found me a room to lay down in. Her kindness meant everything to me.

The doctor ended up being nearly three hours late, and of course I couldn’t say anything and risk rocking the already unstable boat.

I had to smile and keep my cool, all the while screaming on the inside because I could have stayed in the ER for additional treatment if they had just been even the slightest bit willing to accommodate me.

Thankfully it was a successful appointment. The doctor was caring and considerate and took the time to really listen to me. I received a diagnosis I had been waiting years for.

That said, I didn’t lodge a complaint. Why? Because I needed this doctors care. I finally received answers to health issues that had been plaguing me for years, and I wasn’t going to risk that relationship.

I suffered the effects of leaving the ER early for weeks afterwards, but I had to choose between a temporary setback and the potentially permanent loss of the first doctor in years to treat me properly and offer actual hope at improving my quality of life.

Is that a fair choice? Absolutely not. Are disabled people put in these positions all the time in healthcare settings? You bet.

It’s not fair to patients. We aren’t ‘less than’ and we shouldn’t be treated as such. We will have emergencies and setbacks. We will be mistreated. We should be able to lodge complaints and have them taken seriously. We shouldn’t have to fear retaliation. We should have a system that is working to reduce the number of serious events that warrant a complaint. A system that treats patients as true partners in care.

What Can We Do To Help Patients and Create a Better System?

First things first, I think it’s important to provide positive feedback. Healthcare can be a thankless job, and it’s been worse since the Covid pandemic began. Healthcare workers endure a lot of abuse and mistreatment, work long hours and have to contend with a lot of stress.

They’re often seeing patients on the worst day of their lives, and that alone can take a toll.

They can’t always help, and that must be terribly difficult for the ones who care. As I said above, many specialists I saw in the years prior to my diagnosis absolutely believed something was wrong with me. They seemed to feel genuinely bad they couldn’t help. I’m sure that seeing patients suffering and in pain and being unable to figure it out would grind you down over the years.

Human nature is such that we’re often quick to complain and criticize, but more reserved with praise. I think that should change.

If you have a good experience with a healthcare worker, thank them. Did they wear a mask for you without you having to ask? Let them know how much that means to you. Did they spend extra time letting you go over some additional issues or complaints? Tell them you feel valued and cared for. Did they go above and beyond? Send a message to Patient Relations letting them know what a great job they did.

Perhaps with more positive feedback, the negative interactions will improve naturally.

Unfortunately, change takes time and it’s happening far too slowly for most patients. The good news is there are things we can do to make things easier.

For Patients and Allies:

• Have an advocate with you whenever you access healthcare services. If you’re not disabled, offer to be an advocate for someone who is. You can learn more about advocacy in my article here.

• If you’re without an advocate, ask to speak to a hospital social worker, chaplain, nurse manager or patient advocate. Most healthcare facilities will have someone available who can come and speak on your behalf.

• If there’s no one available, phone or video a friend. Often just having another person listening to the conversation can change the outcome.

• If someone tells you about a negative hospital experience, ask them how you can support them. Don’t immediately tell them to ‘just file a complaint’. They may want you to listen and validate their experience. They may need help documenting what happened. They may not want to file a complaint. Whatever they’re feeling is valid, don’t push your beliefs onto them.

• If someone tells you they want to file a complaint, offer to help support them through it. An official complaint takes a tremendous amount of spoons. You might be able to draft an email, edit or assist with phone calls. Anything you can do to lessen the burden will be appreciated.

• Have a robust care plan and advance directive. If things start to go off the rails, having everything clearly documented can help avoid further errors and medical trauma.

• Believe patients. I can’t stress this one enough. All too often we have a negative healthcare experience, confide in someone and end up being gaslit and told it must not ‘be that bad’. What’s worse, if we opt not to file a complaint that fuels the belief that we’re exaggerating the experience. We’re not. We’ve just been through it so many times we feel the exercise is futile. We’ve given up. When you refuse to believe us, you make it harder for us to fight for better care.

For Healthcare Workers:

• Try and remember that what is a regular day at the office for you might be the most stressful and difficult thing a patient does that week/month/year. You’re seeing us at our most vulnerable. We’re sick, scared and coming to you for help. Treat us the way you would want to be treated. The way you would treat a loved one.

• People with chronic illness aren’t able to control when their body has a flare. Committing to anything in advance can be wildly stressful, because we don’t know if our bodies will cooperate on any given day. You can ease that stress by not having punitive cancellation policies. Understand that we don’t cancel unless we have absolutely no other choice. Be kind and rebook as soon as possible.

• Acknowledge that while you may be the medical ‘expert’, we are the experts in our body. That acknowledgment and a commitment to work with us as partners in care can go a long way. If we question you or express a concern, we aren’t questioning your expertise, we are adding to the conversation based on our lived experience. Listen to us and work with us.

• Be open to learning new things.

• Don’t criticize other members of our care team. just did a fantastic article on this, and how it can negatively affect a patient’s health when a doctor questions or belittles another healthcare worker that we know and trust. Recognize that medicine is a team sport, and that when different parties work together the patient benefits.

• Wear a mask. I know it’s not what you want to hear, I know many healthcare workers are sick of masking. But vulnerable patients are counting on you to protect them. To lead by example. To do whatever you can to avoid causing harm. A mask can prevent you from giving your patient a hospital acquired infection, as well as demonstrates to the patient that you care about keeping them as healthy as possible.

• Don’t threaten our advocate or caregiver. Many disabled patients bring someone with them to all healthcare appointments because they’ve learned that they are treated better when someone else is in the room. All too often, if things get even remotely tense, the advocate is threatened with removal. Please don’t do this. Our advocate is incredibly important to us and our safety. When you threaten them, you send a strong message that you don’t care if we feel safe or comfortable in your care.

• Try and encourage open communication and be willing to listen to complaints. This is a big one. No one likes to hear that someone is upset with them, that they think they did their job badly and/or did something wrong. Healthcare workers are no exception. We all struggle with criticism. The difference is that healthcare workers hold lives in their hands. Their job is literal life and death, so if a patient complains, they need to be willing to hear it. To absorb the feedback with an open mind so they can be better equipped to care for the next patient. We don’t complain to cause trouble, we do it to protect ourselves and those who come after us.

• Work with us, as true partners, and we will do the same for you.

At the end of the day, there’s much work to be done to refine the healthcare system so it becomes safer for marginalized and disabled individuals. These systems are incredibly slow to change, and don’t seem terribly motivated to take our opinions and concerns to heart.

I truly believe that one of the best ways we can try and force change is by sharing our stories. I know it’s scary, I stayed silent for years. But if we don’t speak up, the general public will never know how dangerous hospitals can be or how difficult it is to have a complaint taken seriously.

Whenever I share a story about hospital neglect, I invariably receive comments from people who are aghast and outraged but who clearly think the incident was an anomaly. They can’t understand that we all have these stories, most of us have multiples. Mistreatment of the disabled happens every single day in hospitals all around the world. Ableism is rampant, and discrimination and bias know no bounds.

So let’s keep talking. Let’s get loud. Let’s encourage one another to share our stories even when we’re scared.

Let’s remember that we are stronger together, and we deserve safe and unbiased care. We deserve to have our complaints and concerns taken seriously, and must continue to fight until healthcare is safe for all.

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When I dug deeper into their stories, I was shocked to discover how little media attention they were receiving.

This administration has been ‘flooding the zone’ since day one, overwhelming us with a continuous stream of horrors that make it nearly impossible to keep up. As a result, stories fall through the cracks. Injustices go unaddressed. Atrocities go unchallenged.

I completely understand how it happens, there’s simply so much to report on that inevitably things will get missed.

But I can’t allow the stories of Alma Bowman and Rodney Taylor to get lost in the shuffle. Not if I can prevent it.

Given the anti-ICE protests have been going on for two days in Los Angeles, this seemed like a good time to raise awareness about disabled people being detained by ICE as well as how the conditions in detention facilities can lead to disabilities.

We must all raise our voice and fight back. A journalist was shot with a non lethal round covering the protests in LA. He needs emergency surgery to repair the damage to his leg. The situation is escalating and disabled people will no doubt get caught in the cross fire.

Disabled individuals have been tossed to the wayside for far too long. We are treated as ‘acceptable losses’ when it comes to Covid and public health policies. Targeted by fascists who want to remove social supports like Medicaid and food assistance programs. Disregarded by the general public.

We have embraced eugenics, and many people don’t even realize how far down the slippery slope we’ve gone.

The ‘only the vulnerable’ need to worry about Covid line has morphed into ‘only very sick kids should die of measles’. It’s created a world where instead of showing compassion when someone dies of an infectious disease, the first question folks ask is ‘how many comorbids did they have?’ As though a certain number of pre-existing conditions make their death acceptable.

This shift, this narrative that insists over and over that disabled people are expendable, has given permission to treat us as ‘useless eaters’, a term originally used by the Nazis when they targeted disabled people during WWII.

Given how little the average person seems to care about disabled lives, it’s hardly surprising we aren’t hearing more about the inhumane and dangerous treatment of disabled people who find themselves detained by ICE.

So let’s talk about them. Let’s share their stories. Let’s speak out and raise awareness. Let’s ensure they aren’t forgotten.

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Alma Bowman

Alma Bowman is a 58 year old disabled woman from Macon, Georgia. Her father was an American navy veteran, and met Alma’s mother while serving abroad.

During the first Trump regime, she was detained for thirty months in ICE custody. Despite being the daughter of a US veteran, she had her permanent residency revoked for writing $1200 in bad cheques twenty years prior. She had since paid the debt.

Her family argued that she is a US citizen because of her father, but the legal battle to get her citizenship recognized is still ongoing to this day.

When the Covid pandemic hit, she was released from ICE custody due to overcrowding, and she ended up being a whistleblower who worked with the government to expose atrocities committed against people within the detention facilities.

“She became a key witness and survivor to non-consensual procedures being committed by a doctor, including non-consensual gynecological procedures, against women in the Irwin County Detention Center in Georgia (ICDC), which was investigated and condemned by the U.S. Senate and which has since closed.”1

Alma spent nearly three years of her life being detained without due process. Separated from her family, abused at the hands of detention centre employees and denied basic human decency.

Yet when she was released, she became an advocate. She used her real name. She stood up for injustice. She fought to protect others.

Whistleblowers like Alma should be protected, but as we know the current Regime targets anyone they see as a political threat or rival.

ICE has taken Alma again. She was complying with all conditions of her original release, yet when she showed up at the ICE Atlanta Field Office for her regular check-in, she was separated from her family and thrown back into custody.

She’s been held at the Stewart Detention Centre ever since.

I’m going to keep saying her name until she gets the attention she deserves. She needs to be released.

Photo Courtesy of Justice for Alma Bowman

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Rodney Taylor

Rodney Taylor is a disabled double amputee suffering extreme medical neglect at an ICE detention facility in Georgia. He owns and runs a barber shop in Georgia where he’s considered a pillar of the local community. He became engaged to fiancé Mildred Pierre just ten days before ICE took him.

The reason he's detained? "A burglary conviction he received as a teen and which Georgia pardoned him for in 2010."2

When he was detained, he was only two days away from receiving new prosthetic legs.

His old ones require eight hours of charging, which the detention facility almost never provides.

He’s been given shoes that don’t fit the legs and he told The Guardian that trying to walk “felt like walking on concrete on my knees.” 3

He started struggling to get to the cafeteria for meals, but rather than help him access the prosthetics he needed, the facility offered a wheelchair without assessing whether or not he could actually push it (he can’t). He only has two fingers on his right hand, and has been experiencing pain and swelling in his thumb since being detained.

As a result, he’s gone without food. He has increasingly severe hip issues and his request for a medical leave to be assessed for new prosthetics was denied.

This is cruel and inhumane, and is being made easier because the Regime closed the Office for Civil Rights and Civil Liberties (CRCL) and the Office of the Immigration Detention Ombudsman (OIDO). They were critical agencies meant to protect people in custody from exactly this type of neglect.

We already know disabled people have died at the hands of ICE. There are no doubt countless more who will never have their stories told.

These practices must be stopped. No one should be treated this way, regardless of citizenship, race, health status or any other metric. No one deserves this.

Rodney has been speaking out in an attempt to raise awareness of his own plight, as well as the suffering of others being held in the same facility.

No One Should Be Subjected to These Conditions

I’m not a legal expert, nor am I well versed in US immigration policies. But here’s the thing, it doesn’t matter. I don’t have to be, because this is about basic human decency. It shouldn’t be about their status, their previous offences or anything other than their right to be treated humanely.

What ICE is currently doing is not humane. The conditions their detainees are forced to live in amount to cruel and unusual punishment.

Many are detained for years without due process. Others are placed on planes destined for supermax private jails in other countries, without any chance to say goodbye to their families or plead their case to remain in the country.

They are disappearing people. Kidnapping them. And yes, they are killing them.

In fact, on June 24th, 2024 the Physicians for Human Rights released a report that stated ICE has admitted to 68 deaths of people in their custody since 2017.

To be clear, those are only the deaths they admit to. The ones that could easily be tracked and traced. There are no doubt countless more.

What’s even more galling is the fact that the group found that most of the deaths were preventable.

Medical experts concluded that of the 52 deaths reported by ICE between January 1, 2017 and December 31, 2021, that 49 deaths (95 percent) were preventable or possibly preventable if appropriate medical care had been provided. Only three deaths were deemed not preventable. 4

This doesn’t just effect disabled people, it effects every single person in their custody. They aren’t just harming those already disabled, they are more than likely causing more disability.

The lack of proper medical care, combined with unwillingness to mitigate Covid risk or other airborne infections, will result in people becoming disabled within the facilities.

In short, they’re torturing people, and they’re getting away with it. Why? Because many Americans have been incorrectly told that all their problems can be blamed on the ‘migrants’. They’re also told that disabled people are stealing their taxes, a drain on the system and not worthy of protection.

When you combine those two narratives together, it’s painfully easy to see why disabled people face a heightened risk of abuse at the hands of ICE.

What Can We Do?

I know it’s easy to feel hopeless right now. To despair over the state of the world and how difficult it can be to bring about meaningful change.

But we can bring about change. We can choose to be inspired by people like Alma and Rodney. People who spoke up at great personal risk and cost. People who refused to sit silently by while injustice was happening around them.

We too can refuse to be silent. We can raise our voices in whatever way we can. We can protest, we can boycott, we can relentlessly call elected officials and tell them that we categorically oppose the way immigrants are being treated.

If you’re disabled yourself and unable to protest or boycott, don’t feel like your voice doesn’t matter. There are still contributions to be made. Share this article on social media. Say Alma and Rodney’s names. Amplify the voices of independent journalists who are working hard to cover the atrocities being committed by ICE and the Trump regime. Speak out.

You can also form Neighbourhood ICE Watch groups to try and protect your community. There’s an excellent article in Teen Vogue about how and why these grassroots efforts are invaluable for protecting immigrants.

No matter what, remember that the majority of Americans don’t support these heinous policies.

The world is watching in horror and standing in solidarity with everyone who tries to fight back.

We are not a small group and our voices will be heard. If we use them in unison, if we agree that no one is expendable and everyone deserves basic decency, compassion and care, we can turn the tides.

Keep telling Alma and Rodney’s stories. Shout their names until they’re released. When MAGA inevitably tries to make it about their ‘crimes’ or their status, push back.

They want people scared to speak up. They want to make sure everyone knows that if you’re an immigrant, you’re not safe. No one will stand up for you.

So let’s stand up. I’m going to keep standing up until Alma and Rodney are released. Until ICE stops this reign of terror. And I’m asking my readers who are safe to do so to stand with me.

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In Canada, disabled people are expected to survive on approximately $1100 a month. With the rising cost of living, and the added expense of living with chronic illness, it’s nearly impossible.

This article will focus on disability benefits in Canada, but the messaging applies to just about anywhere in the world. Most countries do not provide disabled people with a living wage. They don’t make it easy to apply for benefits, and in fact actively discourage people by making the process as difficult and inhumane as possible.

This is a worldwide problem, and it’s because ableism is so pervasive. It’s because we’ve been conditioned to judge the worth of another person based on economic contribution, and it’s time we change things.

Canada is preparing to roll out a new ‘benefit’ called the CDB (Canada Disability Benefit). When this was promised, it was pitched as a means of lifting disabled people out of poverty. It was used to assuage concerns that expanding our Medical Assistance in Dying program to include people with disabilities would result in people accessing euthanasia due to poverty.

In short, we were promised a substantial benefit to help us stay alive in order to stop us from pushing back about a eugenics program clearly aimed at targeting us.

The CDB was announced at $200 a month, with multiple barriers to access. At least one province (Alberta) is already planning to claw it back from disability recipients.

If it were truly a benefit meant to help protect disabled people from accessing Assisted Death due to poverty, it would have needed to be considerably more. It also needed to be given automatically to anyone on disability, not be another program which requires significant hoops to access (many of which are difficult for the most marginalized among us).

I naively expected there to be more public outcry about this. I thought people would see the very obvious attempt at exterminating disabled people and speak out on our behalf.

No one did. When the election rolled around, none of the people running for Prime Minister addressed the concerns of disabled voters. No one had a plan to improve the CDB. In fact, we no longer even have a Minister for Diversity, Inclusion and People with Disabilities.

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I generally seek to understand why the public reacts a certain way. With Covid I wanted to understand why people are so resistant to taking any precautions. Why they’re so willing to live in denial and risk their life and long term health rather than adapt their behaviour.

With bodily autonomy I seek to understand why those in power think they have the right to control women’s bodies. Why men don’t see an issue with the huge disparities in healthcare access and rights between us and them.

With health politics I seek to understand why people vote against their own interests. Why they elect those who will cause untold amounts of harm, and don’t push back when those who are objectively unqualified are tapped to lead important health positions.

With disability benefits, I wanted to understand why no one was fighting for us. Why no one could see that the CDB was an insult to disabled Canadians, and that chronically ill people the world over are dying every day due to legislated poverty.

Why couldn’t they see that our lives are undervalued? That many deem us ‘useless eaters’ just because we’re unable to work. That society has started allowing us to be called ‘economically inactive’, reducing us to broken cogs in the machine of capitalism instead of actual people.

So I spoke to a former ‘friend’ who was against providing any benefits to those who can’t work. This person knows my situation. He knows how sick I am and how hard I struggle to survive. Yet he’s maintained the attitude that government ‘handouts’ are wrong for a number of years.

I decided to ask him why. I tried to start a dialogue. I tried to understand how someone could be so opposed to providing the vulnerable in society with the means to survive.

When Ableism Goes Unchallenged, Eugenics Follows

I opened the conversation by discussing CERB, the Canadian emergency payment that people received if they were laid off due to Covid shutdowns. My friend was one of those people, and was paid $2000 a month while unable to work because of stay at home measures.

He’s a non disabled, young and cishet white man. Literally the most privileged group in society. He has means of providing for himself that someone like me can only dream of, plus doesn’t have the exorbitant expenses that come with being disabled.

Yet he was provided $2000 a month, when disabled people are only given $1100. I mentioned that this seemed unfair. If the government decided that the average Canadian needed $2000 to stay afloat through an emergency, why did he think disabled people could survive on half that?

He informed me that working people expect to live off what they make, and therefore if they’re suddenly unable to work they ‘deserve’ more money. They were counting on those funds and can’t be expected to make do with less.

He contrasted this with disabled people who he felt needed to learn to budget for their new circumstances and cut out any luxuries or frills (as if any of us have luxuries these days).

I tried to point out that no one plans a disability. The suddenness of it is no different from being laid off from work. I loved my job. It took years to establish myself in my field and get into my dream role. I planned to do it for as long as possible.

I didn’t wake up one day and say “I think in a year I will become totally disabled”. Life doesn’t work like that. Things happen, and they’re almost always unplanned. It’s not a moral failing or personal fault, it’s the nature of life. Most of us will end up disabled at some point.

The only way to plan to ‘make do with less’ would be to spend your entire life assuming you will be disabled and exist within that budget. I don’t know many people who would ever opt to do this (or who are even capable of understanding that they will likely end up disabled themselves).

Next I pointed out that when someone is laid off, that person at least has a chance to try and find an alternate source of income. It would have been hard during Covid shutdowns, but not impossible. Many industries were still operating so if someone couldn’t survive off the $2000 a month, they could try and apply for alternate work.

When you’re on disability, you are literally prohibited from earning any additional money. Depending on the plan you’re on, you may even be barred from inheritance and/or financial gifts. You may be forced to give up your assets (as is the case in the United States). You can’t marry without losing your benefits, because the expectation is that your spouse will take you on as a dependent.

It’s literally designed to be punitive. It’s designed to ensure you can never get ahead. If your disability is permanent, you won’t ever be able to work or earn again.

People were so angry during the Covid shutdowns. They were panicked about money and how long it would be before they could get back to work. While I completely understand the panic, I wish folks would extrapolate that to disabled people. Try to imagine how it would feel to know you would never be able to work again, and that whatever small benefit you’re receiving is going to be the most you will ever be able to live on.

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That is a far more precarious financial situation to be in and yet for some reason, disability payments are almost half of what people on CERB received. My temporarily abled friend saw nothing wrong with that.

He also fundamentally misunderstood the nature of disability. He seemed to think all disability was permanent and in his mind, a personal failure. I explained to him that sometimes people are temporarily disabled due to surgery, an accident etc.

He felt those people deserved the same amount as a ‘working person’ but that the permanently disabled deserved less. He couldn’t even elaborate as to why he felt that way, but my assumption is it was because he could picture himself temporarily disabled and would want the assistance, but it was impossible for him to picture a universe in which permanent disability might befall him.

The last argument I made was an attempt to explain the ‘crip tax’. It’s a term given to describe the fact that when you’re living with disabilities, your costs rise exponentially. Being sick is expensive. There’s medical costs, caregiving costs, mobility aids, special diets, paramedical expenses… the list is endless.

Most of the things a disabled person has to pay for aren’t choices. We can’t cut them out. We can’t find a way to buy them cheaper. They’re fixed expenses that we literally will die without, and they add up in a hurry.

All he said to that was “survival of the fittest”. Which is often the argument non disabled people go to when they know they’ve lost the debate. We transitioned from ableism to eugenics in the span of a ten minute conversation.

He said that disabled people need to consider themselves ‘lucky’ to get anything and not be a burden on those who are still economically active. He said that even though I paid more taxes than him for a considerable portion of my life, all my ‘free surgeries’ and other healthcare expenses, combined with disability, clearly demonstrated that I was a net negative to the system. A drain. Nothing more than a red number on a balance sheet somewhere.

He was obviously angry at this point, which is what tends to happen when you challenge someone’s eugenicist mindset. I think deep down people know it’s wrong to treat others this way, but their ableism is so entrenched that there’s a cognitive disconnect. They lash out.

He went on to say that obviously I was the “exception”. That he wanted me to have everything I needed because he cared about me, but that in general he was sick of disabled people making it harder for him to get ahead. Stealing his tax dollars. Weighing down the system.

He couldn’t understand that his tax dollars line the pockets of the rich far more than they help someone like me, and that his inability to get ahead was more due to questionable personal choices as well as the punishing nature of end stage capitalism.

It is not and has never been the fault of disabled people.

Is This “Soft” Eugenics?

Not too long ago The Guardian published an article claiming the Trump Administration was practicing ‘Soft’ eugenics. I took issue with the descriptor, because I don’t think you should ever downplay what eugenics is. There is no such thing as soft eugenics. Killing people because of their disabilities or health status is anything but ‘soft’.

That being said, this conversation with my “friend” helped me to better understand what the article meant by ‘soft’ eugenics.

My friend wouldn’t advocate for killing people like me. He doesn’t want us rounded up into camps and exterminated. He wouldn’t take someone’s life just because they’re disabled.

But he also doesn’t think we deserve the necessary support to survive. When I pressed him on this, and asked what his ‘solution’ would be, he admitted he felt that healthcare and social supports should be taken away from disabled people so that ‘survival of the fittest’ can do its job.

He stopped short of saying we should be murdered, and instead opted to say that he felt it was wrong that our lives were being ‘artificially extended’ with social handouts. That we weren’t meant to survive, and if benefits were stripped away most of us would die a ‘natural’ death.

First, there’s nothing natural about that. It’s cruel and callous and absolutely falls in the category of eugenics. Second, it’s morally bankrupt.

I knew this was another friendship lost. I’ve lost so many people since becoming disabled that I have an entire article planned on the abandonment that those in our community have to endure.

It hurts every single time, but it’s impossible to keep someone in your life who thinks you should be left to die.

Knowing I would likely never speak to him again, I asked him what would happen if he ever became disabled. I asked if he would be ok forgoing healthcare and all social supports and just slowing dying so as not to be a ‘burden’.

I’m sure many of you can guess what his answer was, because it’s the answer most ableists give when forced to face the reality that disability can and likely will happen to them.

“I would just kill myself.”

Yep, he went straight to the ‘better off dead’ argument. This person had so much internalized ableism, so much disdain for people living with disabilities, that he had convinced himself he wouldn’t even want to survive.

I can assure you, the vast majority of us want to survive. We experience joy, we have people we love and who love us. We have hopes and dreams for our lives even if they look vastly different than they did before we became disabled. We are not ‘better off dead.’

And the reality is that most people will want to survive when faced with disability. They just can’t comprehend it because their internalized ableism is so strong.

When it happens to them, they often reach out to the disabled person in their lives with some manner of “I had no idea it was this bad!”. They ask for our help. They express fear that they won’t be able to make ends meet on the meagre supports provided. They express heartbreak at how most people in their lives are suddenly treating them as expendable. They express a desire to survive.

They almost never say sorry. They never acknowledge that they treated us badly and only want our help now because they have become an ‘other’.

That’s the nature of our world. As a society we undervalue the lives of disabled people so severely that almost no one fights for us until they’ve already joined our ranks.

We Need to Stop Debating a Person’s Worth

The root cause of this ‘othering’ is ableism, but I believe it goes deeper than that. End stage capitalism and society’s belief that certain people are inherently worth more than others has done untold amounts of damage.

We begin to associate our own worth with economic contributions. When we become disabled, we often struggle with being taken out of the workforce. We feel like burdens. We chide ourselves for being worthless and lacking purpose.

We are not worthless. Worth is a societal construct, and it’s not helping anyone.

Every single person has inherent value just by being themselves. It’s not about what they do for a living, how much money they have or how much they ‘contribute’ to society.

When we begin to debate a person’s worth, we’ve already lost. Fascism and eugenics both thrive on ‘othering’ people. On creating an enemy to blame for various problems that they don’t want to solve. Sometimes it’s immigrants, LGBTQ+ individuals, those living in poverty or those of us with disabilities.

It’s almost never privileged white people. Especially these days. Those who have the most in society are actively targeting the vulnerable, and they’re doing it by debating our ‘worth’ in public.

They convince the masses that rugged individualism is the way forward. That you can ‘try harder’ your way out of any difficult circumstance, and those of us who can’t are failing. We’re choosing not to. We have less value.

We have to agree not to debate each other’s worth. We must stand up for the most vulnerable in society whenever they’re targeted. We must stop believing that economic contribution is the only metric by which a human life is measured. It’s getting us nowhere fast.

We can fight back. We can raise our voice and resist wherever possible. Whether that be protests, boycotts, calls to elected officials or telling our own stories.

We can call out coded language whenever we hear it. When someone starts to assign value to a group of people, we can push back. We can remind them that we all have worth. We can point out that we were never designed to be the arbiters of another person’s fate.

We must all work together towards a common goal. A society that treats everyone with love, compassion and empathy. That provides universal healthcare, universal basic income, affordable food, housing and childcare. Clean air and water. A society that provides for the most vulnerable instead of catering to the elite.

A society that says no one deserves to be left behind.

I believe we can do it, but we have to start right away.

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Reproductive rights is an issue that’s always been near and dear to my heart. When I was in my late teens and early twenties I received a shocking lesson in misogyny, patriarchy and the lack of autonomy granted to those of us who have a uterus.

I was diagnosed with stage four endometriosis and adenomyosis, and the conditions left me completely disabled. Unable to work or function, I spent my days in unrelenting pain. I was in and out of hospitals requiring regular blood and iron transfusions.

I didn’t want children, nor was I healthy enough to be a mother. So I asked my doctor for a hysterectomy.

At the time it seemed a perfectly reasonable request. My uterus was diseased, I had undergone six surgeries which had not improved things, and my quality of life was gone. Why would I keep something in my body that was making me so incredibly sick?

Needless to say I was shocked when I was told ‘No’ and the reason given was ‘you might change your mind and want kids one day.’

Sure, anything is possible. I might also win the lottery, but I’m not counting on it.

I wasn’t given autonomy over my body. I wasn’t allowed to make the choice that was right for me.

I saw a series of doctors over a number of years who all said the same thing. “You might change your mind.”

Many also referenced a hypothetical ‘dream man’ who would leave me if he realized I couldn’t have kids.

At every painful appointment, I was reminded that my life was worth less than a hypothetical future child. That I was a womb, not a person. That the fact that I didn’t want to have children, physically couldn’t care for them and was completely disabled by my uterus didn’t matter because there MIGHT be a man and a baby in my future.

It was a rude awakening into just how badly women are treated by the medical system. This happened in Canada, where we are generally more liberal about autonomy than our neighbours to the south. There also wasn’t a fetus involved. I wasn’t trying to access an abortion, I simply wanted my uterus removed.

The uphill battle I faced to get a surgery I desperately needed inspired me to learn more about abortion access and reproductive rights. It’s why I feel passionately that choice should be given to everyone, and that the government has no business regulating what we do with our bodies.

Which brings me to Adriana, a case so disturbing it’s been keeping me up at night.

Adriana Smith and Georgia’s Abortion Ban

Adriana was a 30 year old mother and nurse who was nine weeks pregnant when she experienced severe headaches which sent her to the ER.

Despite being a healthcare worker herself, she was unable to get proper care. The hospital dismissed her concerns and sent her home. The next day she was pronounced brain dead due to multiple blood clots in her brain.

The hospital immediately placed her on ‘organ and tissue support’ because of Georgia’s abortion ban. They did not ask for permission from her family or give them any say in the matter. They turned Adriana into a human incubator for her fetus.

Having your concerns dismissed in the ER is nothing new to most of us, especially women and marginalized individuals. Misogyny, ableism and discrimination are far more rampant in healthcare settings than we want to believe.

It’s even worse if you’re black. Misogynoir, which is the term given to the sexism and racism experienced by black women, is a serious issue in America. Black women are three times more likely to die in pregnancy because their pregnancy related concerns are frequently dismissed.

This intersection of sexism and racism creates an exceedingly dangerous situation, and it only gets worse in states with abortion bans.

Pregnancy is considered a temporary disability, so Adriana would be considered marginalized in a number of ways. A black, disabled woman struggles to access the healthcare care she needs to survive, only to have ‘care’ we don’t know she would have wanted forced onto her due to the state’s draconian abortion ban.

What are we even doing anymore?

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Strict abortion bans like the one in Georgia have been on the books for many years, but thanks to the protection of Roe v Wade were unable to be enforced. When the Supreme Court overturned Roe, these ‘trigger laws’ immediately went into effect. They’ve already killed at least two women in Georgia that we know of, and now are causing tremendous pain and suffering to the family of Adriana Smith.

There are vanishingly few cases of pregnant people being kept alive after brain death so a fetus can be born. Most of the ones in the medical literature involved a median gestational age of twenty weeks, which reduced the amount of time the fetus needed to remain inside it’s deceased mother.

Adriana was only nine weeks when declared brain dead, meaning they are keeping her alive far longer than is generally medically indicated. They’ve given her family absolutely no say in what happens to her, effectively forcing them to endure the trauma of watching their daughter waste away on machines as hospital staff treat her as nothing more than an incubator.

Her case is a perfect example of why we say that abortion is healthcare. It is a necessary part of reproductive health and one that should never be criminalized. When abortion bans exist, women lose control over their bodies. They no longer get to decide what’s best for them, and Adriana’s case is an extreme example of what can go wrong.

Obviously we can’t possibly know her wishes, and while her family have said this is ‘torture’ for them, they’ve not publicly said whether they would have terminated tissue and organ support.

What we do know is that a hospital failed to provide a pregnant woman with necessary care to save her life, and then forced ‘care’ upon her deceased body in an attempt to save a fetus. They did not get the consent of next of kin to do this, because legally they do not need it.

They made the decision for Adriana’s family, in order to ensure they don’t run afoul of the abortion ban. And that is never going to be ok.

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Abortion Is Healthcare

I’m not going to spend a lot of time on this since there are many other incredible writers who dedicate their entire newsletters to explaining the various ways abortion is healthcare.

If you want to learn more I highly recommend starting with . Her publication “Abortion, Every Day” is a fountain of information on this subject.

That said, it’s important to ensure people understand that many life saving medical procedures are technically classed as ‘abortions’. When abortion is criminalized, women can’t access the care they need to survive.

An example of this would be an ectopic pregnancy. It’s a pregnancy that occurs outside the uterus, and threatens the life of the mother. It’s not viable. A fetus can not survive outside the uterus and must be surgically removed.

In states with abortion bans, healthcare workers have to wait until the mother’s life is in danger before they can intervene. Who makes that call? How sick does a pregnant person need to become before it’s legally ‘ok’ to remove the pregnancy?

These are the questions healthcare workers are wrestling with. If they intervene too early, they risk being charged with a crime. If they wait too long, they risk killing their patient.

Suffice it to say there’s a reason many OBGYNs are leaving states with abortion bans in large numbers. They don’t want to be put in that situation. They don’t want to have to contact the hospital legal team before providing the care they know their patient needs. They don’t want to fear arrest and prosecution for simply doing their jobs.

A similar situation occurs with an incomplete miscarriage, which is a situation where some fetal tissue is left behind following a pregnancy loss. If not removed, the mother can become septic and die. The pregnancy is over and the fetus is no longer viable, yet strict abortion bans say that doctors can’t intervene until the life of the mother is clearly in jeopardy.

Pregnancy is always considered a high risk condition. Anything that you’re at risk for in regular life will be amplified during pregnancy. It’s exceedingly dangerous to force healthcare workers to play a game of chicken with their patient’s life. To insist they get it ‘just right’ with respect to when the life of the mother is in jeopardy.

All too often, when a pregnant patient decompensates, it happens rapidly and can quickly result in death. Why are we forcing healthcare workers to wait until that moment before they can do their job?

Because it’s not about being pro life, it’s about control. The people behind these bans seek to control women. One of the best ways to control us is to remove our autonomy over our own bodies.

Abortion bans keep women trapped in abusive relationships, they jeopardize their health, force them into poverty and traumatize them. That’s without even getting into the discussion about victims of rape and incest, who’ve already had their autonomy violated by their abuser and then end up being violated all over again when they’re forced to keep a pregnancy they do not want.

In Short, Women Have Lost Control Over Their Bodies

When abortion bans exist, or when fetal personhood is granted, women lose all control over their bodies. These laws effectively criminalize pregnancy, and take a condition which already puts a person at high risk and elevates that risk even more.

Fetal “personhood” refers to the idea that a fetus (and sometimes an embryo) is a person under the law with full legal rights. This means that abortion at any stage of pregnancy could be considered murder, and a pregnant person and anyone who helped them access an abortion can be charged with a crime.

In Alabama it’s been taken a step further, with the Supreme Court ruling that frozen embryos are ‘children’ and therefore destroying them is also murder. This has far reaching consequences for the future of IVF and fertility treatments.

Fetal personhood also gives a right to a fetus that no other person has, the right to use another human being’s body without express and ongoing consent. These laws effectively allow a pregnant person’s life to be put at risk whether they agree or not. They force those who don’t wish to be pregnant to carry to term. They strip one person of their autonomy, safety and legal right to choose what’s best for them in order to give rights to another.

It’s not ok, and it’s killing people.

The Government Shouldn’t Get To Decide What We Do With Our Bodies

The abortion debate comes down to one simple issue, autonomy. The government should not get to decide what we do with our bodies. The decision to have an abortion is one to be made between a pregnant person, their partner/spouse (if there is one) and their doctor. It’s no one else’s business.

I think this is something we need to keep calling out. It’s no one else’s business. That includes the government.

Adriana’s case is a perfect example of this. I’ve seen a lot of people saying they ‘need more information’. They want to know whether Adriana had a DNR (Do Not Resuscitate Order), whether her family are prepared to keep and parent their grandchild and whether Adriana ‘wanted’ her baby.

I understand the impulse to want more information. I get that people might find it easier to decide how they feel about this very complex situation if they have all the facts. But we aren’t entitled to her private medical details or the wishes of her family. It’s not our business.

We can’t know what she would have wanted or how her family plan to proceed if the baby survives.

Here’s the most important part, just like we can’t possibly know their wishes, neither can the government.

Please read that again. The government can not possibly know what’s best for this family. They can’t know what’s best for the potential child should it be born. They can’t know if it will be well cared for, if it will survive outside of the womb, if it will have access to what it needs to survive and thrive.

The only people who know these things are the family and the medical team, yet they’re not being permitted to make the decision. Georgia’s restrictive abortion ban has taken it out of their hands.

These bans tell people that they’re competent enough to raise a child, but not to decide for themselves if having a child is the right choice. That will never be ok.

The government has no business regulating our reproductive organs. Abortion bans don’t save lives, they end them. Maternal and infant mortality increase significantly in states with restrictive abortion bans, because people can’t access the care they need to save their own lives and/or the life of their baby.

Adriana’s family deserved to have the right to make the decision that was best for them. They’re already suffering the trauma of losing their daughter to medical neglect, forcing them to watch her waste away on machines as a human incubator without ever asking them if it’s what they want? It’s tantamount to torture. It’s a medical experiment being done without consent.

Adriana also deserved to have the right to make her own decisions regarding end of life care, but even if she had an Advanced Directive or a DNR it likely would have been disregarded. Only eight States currently honour the Advance Directives of pregnant people, the rest have ‘pregnancy clauses’ which take away their autonomy even in death.

If The State Demands Forced Birth, It Should Be Required To Support the Child

This is the last argument I want to make against forced birth, and it’s one that a lot of pro life people seem intent on ignoring.

The United States does not have Universal Healthcare. Their social supports are woefully lacking. They have high rates of poverty and homelessness. They’re the richest country in the world, and yet a study was recently released that showed a majority of Americans can’t afford a MINIMAL quality of life.

The cost of keeping Adriana on organ and tissue support will be astronomical, and we don’t know who’s paying for it. Is the hospital footing the bill or do they intend to bankrupt her parents? Assuming it’s the latter, how are they going to be able to support the baby that the state is forcing them to have?

There’s also the fact that the odds of the fetus having serious disabilities are quite high. It’s already been found to be suffering from hydrocephalus (fluid on the brain) and is incubating inside someone who experienced complete brain death at nine weeks. The medical team have to attempt to regulate Adriana’s hormones, nutrition, cardiac output and more, and it’s simply nowhere near the same as developing inside of a living mother.

Karen Tang, an OBGYN, did some research into similar cases and found that of thirty pregnancies that experienced brain death, only twelve fetuses were viable when born. Of the cases she uncovered, the earliest case of brain death was 16 weeks, a full seven weeks later than Adriana.

This is a medical experiment. We simply cannot know what is being done to the fetus under these incredibly stressful conditions. It’s not right to force a family to sit with these unknowns and watch their brain dead daughter be experimented on because of an abortion ban.

To be clear, I’m in no way saying we should abort fetuses that will be born with disabilities. That’s eugenics which I do not support.

What I’m saying is that the decision can not and should not ever be up to the Government.

If they’re going to take the choice away from pregnant people and their families, they should have a legal and moral obligation to provide full support for the baby they are forcing into the world.

If this were truly about being ‘pro life’ (which we know it’s not) they would ensure that all babies born were being given medical care, food, shelter, education and love.

They don’t do that because it’s not about life. The moment the fetus is outside of the mother, it’s effectively on it’s own. The current US government doesn’t care about what happens to babies, especially if they’re black, poor, disabled or marginalized. They care about controlling women, forcing them to endure a pregnancy and birth that they don’t want, and then they wash their hands of the entire situation.

In case you think I’m being hyperbolic, let’s look at infant mortality rates in Georgia, the State currently forcing Adriana to be an incubator for her fetus.

Their infant mortality is one of the worst in the US, and in 2022 (after the fall of Roe) they saw a 13% increase in infant deaths (compared to a 3% increase overall). Worse still, black babies have the highest rate of infant deaths in the US at 10.86 per 1000 live births.1

This has never been about protecting babies. The stats speak for themselves.

Where Do We Go From Here?

First, we need to acknowledge that women will never have true equality under the law or be free from oppression until they have autonomy over their bodies and choice when it comes to their reproductive rights.

We do not deserve to be treated as nothing more than incubators, nor should we ever be made INTO an incubator like what’s happening to Adriana.

Abortion is healthcare, and we need to fight to ensure everyone has access to the reproductive healthcare they need and deserve.

Secondly, I encourage everyone to fight the proposed “Big Beautiful Bill” the Republicans are trying to force through. It cuts Medicaid and food assistance programs, both of which are necessary to protect disabled and low income babies that this same government are forcing be born.

It just recently passed a key committee in a late night vote on Sunday May 18th, but we can still fight it.

Medicaid currently provides care to a third of disabled children and 7 out of 10 poor disabled children.

It is the height of cruelty to slash the program while at the same time forcing women to give birth to babies they don’t want, can’t afford and/or can’t care for.

Call your elected officials. Demand they vote ‘No’ on cuts to Medicaid and food assistance. While you’re talking to them, make sure they know you also oppose abortion bans and forced birth policies.

I know it can feel dire right now, but we need to remember that we all have a voice. We all have power. When we use our voice, it can make a difference.

In addition to calling and emailing elected officials, tell your stories. I know it’s scary and not everyone has the privilege of a platform, but if you’re able, speak up. Tell the world about what medical misogyny or misogynoir has done to you. What challenges you’ve faced accessing reproductive healthcare. What an abortion ban would do to you and your loved ones.

Finally, amplify the stories of those who are most marginalized. They can struggle to get their stories told. Share them, support them and hold space for them. Hold space for Adriana’s family, and for all the other women who have died, been traumatized or disabled by medical misogyny and cruel forced birth policies.

We are stronger together.

If you want to learn more about the medical ethics of Adriana Smith’s case, I strongly recommend this video by

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