31 Comments

Kelly, let me be clear. This article is brilliant. NONE of what you said is unreasonable. As a disabled older MD with a large patient population who has many co morbidities and is often very frail, it is a rule in my office that EVERYONE wear respirators. I occasionally relax this rule, but also have high quality HEPA UV filters running at all times in the office, including in the examination rules. My staff MUST wear respirators when we are seeing patients. My colleagues criticized me frequently until it became clear they were incorrect and still refuse to wear respirators. I DON'T care because I HAVE A DUTY OF CARE to patients, staff, family and myself which I take seriously. You are completely correct in what you write here. I will NOT waver in my full support of you and those disabled and different from me to make their own choices regarding health care and other personal choices. Thanks for writing this.

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Thank you! For responding but also for taking your duty of care seriously and doing everything you can to protect yourself, your staff and your patients.

It's beyond disappointing to see how many healthcare workers refuse just because they don't WANT to.

Patients like me don't WANT to be sick. We didn't choose it - we don't want to be in your clinic or hospital. We are doing the best we can. The least they can do is minimize the odds of making us even worse by giving us a devastating vascular virus.

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Absolutely a fantastic article. You are so right. When the mask mandates were stopped here, hundreds of elderly died over the next 3-4 months. It was appalling. One guy commented on a post I had up that they probably would have died from a cold. I was so angry. COVID is an inflammatory disease that results in not just Long COVID but stroke, heart attack in those already at risk because of clotting. And permanent lung disease. As a Critical Care Nurse, I support your work and will also join in to support social justice for Everyone.

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Thank you Pat - I appreciate your support! I also get angry when people say “they would have probably died anyways”… when did we decide we got to be arbiters of someone else’s fate? It’s so callous. And for what? Just so they don’t have to wear a mask? Is it really THAT bad? (Answer - no)

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It’s just so petty!!

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Wearing my mask as I came out of a railway station I was shocked and lots of other adjectives to see a 35 year old Fit man give me a look of absolute hatred and I'm going to rip that off your face.

in my long life I have never seen a look like that other than in films etc. never in real life.

Considering what is happening in the hospitals in fact everywhere the whole human race is going to become disabled within about 10 years from current covid statistics.

what they're just don't seem to realize it ironically is I believe as a physicist it's only about 20 to 30 years or so before global warming starts the collapse of civilization and the end of humanity anyway.

When the very first civilizations started say 4000 to 6,000 years ago they immediately started fighting with the one next door so that just about tells you all you need to know about humanity. The whole history of early mankind is a story of creation of Empires and Conquest and in fact if you think about it it has never stopped.

if we don't do something about it Europe will be in flames in a few years. Once Russia has conquered Europe It will be powerful enough to conquer the USA.

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I’m sorry that happened to you. It’s really quite sad how angry People get just seeing a mask. Many of us have experienced the stares and glares and outright hostility for masking.

I wish more people would take the very real threat of disability seriously. Survivorship bias is playing a huge role here I think: “I had Covid and I’m fine so it’s not a threat”. They don’t realize that cumulative infections increase risk considerably.

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Very true and very worrying!

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As for moving to Canada: Lizz Winstead started the application to move to Canada during Trump's first term. She's a writer who co-created The Daily Show. She's cishet and able-bodied, and had enough money to buy her own house and live comfortably. You may know her as the indispensable source of reliable political news on social media, GottaLaff. It took years of interviews and reviews and paperwork. She is just now making the move.

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Thank you for sharing! It's a great example of how difficult it can be to start over in another country - even when you have the resources, health and necessary privilege.

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Never stopped masking. Won't stop masking. I love the side-eyes I get. I glare right back. When someone makes a comment, I ask how many times they've had it, because I haven't (thank gawd). It's getting cooler, so my friends know to bundle up if we are going out to dinner, because it's patio or no place for me. I mask in the office anytime anyone has travelled. They all know great bodily harm will come to them if they give it to me.

No one knows what's next. All I can suggest is staying in the moment. Prepare, but let's focus on today. It's like owning a fire extinguisher or an earthquake kit. I have them, but I don't think about them unless I smell smoke or there's a quake. There's going to be plenty coming at us, much of it out of our control. But I'm not going back to the bad mood I was in from 2016-2022. It only hurt me. It did nothing to change the world. Clearly. Let's keep things in perspective. We have to pace ourselves. It's going to be a long road. xo

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Thank you for continuing to mask! The side eyes are fascinating - especially where elevators are concerned. in my own building people never want to share with me which I find hilarious because I’m the LEAST risky person. My respirator means even if I did have Covid - it’s unlikely I would spread it to anyone else. Still they back away.

Great advice about staying in the moment too - hard to do - but oh so important for mental health.

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Thank you for putting it into words. I still can't. But this is, as always, well said.

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It was not an easy thing to do and certainly took a lot of spoons. I'm glad to have been able to say something that hopefully brings comfort to others in these dark times.

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I appreciate and recognize these are very difficult times for disabled people - you have my continued support

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Thank you for the support Bob - it's much appreciated!

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Damn this is good!!! Thank you! I needed to hear this.

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You’re so welcome! I’m glad it helped you!

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Excellent point about how the masses chose this outcome. I still can't figure out why, but I'm very worried for the future.

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I think anyone who is paying attention (which granted feels like not many people) are justifiably worried right now. Hopefully we can turn the tides!

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good insight🌹🌻🌸💐💚💛💜❤️🌼😍🥰

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Thank you!

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I'm disabled. I have been for 20+ years. I went to the hospital because I'd fractured a vertebrae and could not move. They did X-RAYs and a C/T scan. I woke up screaming in pain, not realizing I was in an MRI, because they refused to treat my pain. They billed for the MRI and refused to do another.

After I was admitted I realized I was being treated for COVID although I had no symptoms. At the time I rarely left home and always wore a KN95 when I did.

Obviously I'd acquired COVID at the hospital. Worse, they had no intention of treating my fractured vertebrae.

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I'm so sorry to hear this Ellen. It's awful the way disabled patients are being treated in some healthcare settings right now. For many people their first and only Covid infection was acquired during unavoidable hospital care - and that should NOT be happening.

The fact that we KNOW how to prevent it - and could prevent 99% of cases - and yet we refuse to try? it will never sit right with me. Patients like you deserved much better than they got.

Did you make a full recovery? How are you doing now?

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Luckily I was vaccinated and was treated with remdesivir although I had no symptoms. I still noticed some after effects and only time will tell if COVID caused any permanent damage.

My spine is not okay. I'd had issues with that ER before but had never been inpatient there. The hospital refused a transfer and wanted to release me to rehab. I refused and made their lives miserable. In the end they gave me a body brace and they said they ordered home care that never arrived. My injury required early treatment to properly heal. Treatment I didn't get.

I don't even like to think about the humiliation they've put me though. I didn't sue as that requires rehashing and reliving it ad nauseum. I'd have never been able to handle my lengthy disability if I focused on their inhumanity. I do my best to carry on.

Thanks for your warmth and support!

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I’m glad you can focus on carrying on and NOT on their inhumanity (which you didn’t deserve).

We all deserve proper, timely and respectful care. One day I hope we will all get it!

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I am a disability activist and I agree that there are times where masking is appropriate. However there needs to be a balance with other communities such as the Deaf/Hard of Hearing community who who have literally complained about masking making it impossible to communicate with people.

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I agree - we need to keep all members of the community in mind. There are ways to deal with those who are hard of hearing though - like clear N95s or full face respirators that allow you to read lips.

I don't understand why we didn't embrace clear masks more - with increased demand we would see more innovation!

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There are people with disabilities that masking interferes with breathing or people on the Spectrum who can't handle having a mask on their face as well. I believe in people having the choice to make decisions about their bodies and that includes wearing a mask at this point especially with COVID vaccines being available. I wear a mask on a regular basis due to my health issues.

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The vaccines don’t prevent transmission or Long Covid - many people currently disabled were infected after the vaccines when they stopped masking.

I’m only calling for mask mandates in healthcare settings - because too many people are being infected seeking medical care and hospital acquired covid has a 10% fatality rate. Those who are unable to mask would be protected if everyone else were wearing them.

otherwise I encourage people to consider masking IF they’re able to - if more people were doing it then we would see far less transmission.

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There are people with disabilities that masking interferes with breathing or people on the Spectrum who can't handle having a mask on their face as well. I believe in people having the choice to make decisions about their bodies and that includes wearing a mask at this point especially with COVID vaccines being available.

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