A few weeks ago I wrote a piece called “I Won’t Go to the ER Unless I’m Literally Dying.” It was an examination of all the reasons that disabled and chronically ill people fear accessing medical care. The responses I received confirmed what I knew to be true from my own experience - many people dealing with complex chronic illness simply WON’T go to the hospital. The dangers that exist for us when hospitalized are so numerous that people will roll the dice with potential death just to avoid going in.
That article became a five part series on the overall hospital experience facing disabled and chronically ill individuals. You can find Part 2 - Tips for Surviving a Hospital Trip When Chronically Ill here and Part 3 - How to Stay Covid Safe When in Hospital here.
As much as many of us want to avoid the hospital - the reality is there are situations which force our hand. Whether a friend of family member calls paramedics and we’re taken against our will - or our suffering becomes too untenable and we are forced to access care - we WILL find ourselves in the hospital at some point in our lives. When that happens it’s critical you have an advocate with you.
Image Description: A hand with a red ‘allergy bracelet’ is seen extending out of a hospital gurney. Another hand is holding it.
Many non-disabled people or those who’ve had little interaction with the healthcare system often ask WHY an advocate is needed. I commonly hear things like ‘you’re in a hospital - that’s the safest place you can be.’ These comments may be well-intentioned but they display a shocking lack of understanding about the disabled experience. Unfortunately hospitals are one of the LEAST safe places we can be.
When you are hospitalized - you give up your agency. You are put in the control of doctors and nurses who may have limited understanding of your condition. What and when you eat, when you take your medications (and what medications you’re given)… it’s all out of your control. If you’re someone like me with multiple allergies and severe sensitivities it becomes even more dangerous - as hospital settings are riddled with allergens and chemical triggers. If you’re immune compromised you’re at high risk of developing a nosocomial infection - and hospitals are where the strongest bugs thrive. If you’re marginalized in any way or diagnosed with any type of mental illness - the odds that you may experience abuse or be psychologized and placed on a psychiatric hold are much higher. All of this is to say - hospitals are simply not safe places for disabled people.
Before I continue I want to highlight a few examples of situations where disabled patients have lost their lives or endured tremendous suffering due to medical negligence. This isn’t to scare people - but is an attempt to shine light on a serious problem within our system. Disabled people know their bodies best and are often gaslit, ignored and mistreated… sometimes with devastating consequences.
My heart is heavy for every one of the people I’m including in this list - and I ask that we all spare a thought for every person who’s suffered or lost their lives because of lack of (or improper) medical care:
Millie McAinsh who has severe ME/CFS and is fighting for her life with doctors who don’t know how (or are unwilling) to treat her.
Maeve Boothby O'Neill who died at 27 from complications of ME (there is currently an inquest in the UK to investigate her death).
Roger Foley - a disabled man who launched a lawsuit against an Ontario, Canada hospital for bringing up Medical Assistance in Dying against his wishes.
Stephanie Lavoie who ended her life via Canada’s Medical Assistance in Dying program - weighing only 59lbs and having been refused assistance with feeding.
A 56 year old man with Down’s Syndrome who died after hospital staff ‘mismanaged’ his nutrition and neglected to feed him for nine days.
Normand Meunier - a 66 year old quadriplegic man who died via Canada’s Medical Assistance in Dying Program after spending four days on an ER stretcher. In that time he was not turned or provided with a necessary mattress to avoid bedsores.
Lastly - and perhaps most damning - Professor Amit Patel who had the rare disease HLH and was considered a prominent expert in the condition. His wife - who was also a physician - was his advocate while in hospital. He died when doctors performed a procedure he explicitly said he didn’t want because it was dangerous for someone with his condition.
Sadly - there are countless examples like the ones I’ve listed above. Thousands more who never make the news - especially those who have no loved one or advocate to sound the alarm when the worst happens.
Which brings us to the need to have an advocate. If you have the luxury of choosing your advocate (many of us do not) you want to pick someone who is knowledgeable about your conditions, readily available and calm and cool under pressure. Often a man is better than a woman - there’s still a lot of misogyny in medicine and men are taken more seriously than women.
If you don’t have the luxury of choosing your advocate - try and ensure whoever will be there with you is as educated as possible on your disabilities. Have a detailed care plan and advanced directive they can follow which CLEARLY states your wishes should you be incapacitated or unconscious and unable to make decisions for yourself. Make sure your advocate keeps copies of these documents in a safe place and brings them to the hospital. Consider contacting a lawyer if you can afford one to ensure that your advocate has the legal right to make decisions for you if necessary.
If you don’t have anyone to be your advocate - many hospitals will provide one. You can request a social worker or chaplain, nursing floor manager or someone from patient relations. This is less ideal than having your own dedicated advocate but it is absolutely better than nothing. Having another set of eyes and ears in the room with you is crucial for protecting your safety.
Image Description: A hand holds a ripped piece of white paper. Black text reads “phone a friend’ with an image of a corded phone.
So you’ve been chosen to be an advocate to someone who’s disabled or chronically ill. What next? How can you make sure you’re the best advocate you can be?
There’s a number of things you can do to be an effective advocate:
Learn as much as you can about the disabilities and/or chronic illnesses impacting the person you’re advocating for. The more knowledgeable you are - the better.
Keep any documents provided to you (like advanced directives, lists of medications and treating physicians) in a safe place and always bring copies to the hospital. Never give the originals to hospital staff - you may not get them back.
Make sure you’re up to date on all medication and supplements the person is taking (and what their medication schedule is). Be aware of any drug allergies or common contraindications. Helping someone stay on their medication schedule while in hospital is a huge step towards mitigating the post hospital crash.
Have a “go bag” of your own. In my Tips & Tricks for a Hospital Stay article I spoke about the importance of having a go bag when you’re disabled and chronically ill - but as an advocate you should have one as well. In an airplane safety demonstration they always tell you to put the oxygen mask on yourself first - and this is no different. You need to make sure you’ve got any medications or other essentials for yourself in case it’s a long visit. Pack a cellphone charger, a good book or some magazines. Bottled water and snacks. Make sure you’re able to be in it for the long haul.
In addition to the go bag - if there’s a comfort item that you know would help ease the suffering of the person you’re advocating for - bring it. If you’re not sure … think about things you might like to help you pass the time. Maybe an adult colouring book or an easy board game. Hospitals are scary places but they can also be dreadfully boring - never underestimate the power of a good distraction.
Educate yourself on the additional advocacy supports available in the hospital. This will vary depending on where you live - but make sure you know if the hospital has social workers, a chaplain, a patient relations department etc. These services can come in very handy when advocating for a disabled patient.
Do not abuse hospital staff. This should go without saying - but it’s important to advocate in a calm manner to avoid any anger being taken out on the patient. Most hospitals have a zero tolerance policy for abuse (verbal or physical) and if a situation escalates you could be removed and the patient left with no support. Be firm and clear but careful not to cause additional conflict.
Try and learn the signs that the patient may be experiencing gaslighting or being unfairly psychologized. This can be difficult and may take some time to recognize - but it’s a very important skill to have. Read other disabled advocates or follow them on social media - this is a topic that’s covered often and hearing directly from patients is one of the best ways to learn. I will also cover medical gaslighting in greater detail in Part 5 of this series - ‘My Most Dangerous ER Experience and How My Advocate Saved My Life.’ If you want to learn more about the general gaslighting that disabled people experience - I wrote an article about that here.
Wear a mask. People may be sick of hearing me say this but we are still in a pandemic. Hospital Acquired Covid is a very real threat to disabled patients and it’s important to mask around them to reduce the chances of infecting them. It will also be much easier for you to convince healthcare workers to mask if you’re leading by example and wearing a respirator. Consider bringing extra respirators to provide to staff and make sure they know that no one is to come in contact with the patient unless wearing a mask. You can read more about How to Stay Covid Safe When in Hospital here.
Work on unlearning your own ableism. This is a tough one. Many people don’t even realize they’ve got internalized ableism but we ALL have it. The more you can learn about it the more effective you will be advocating for someone with disabilities. A good way to do this is to listen to disability advocates who speak on the subject of ableism. One author I highly recommend is Alice Wong who founded The Disability Visibility Project. She is an excellent resource and inspirational voice within the disability community.
Take care of your own health and well being. You can’t help anyone if you’re sick yourself - so make sure that you are doing what you need to do to stay well. Being an advocate or caregiver is incredibly hard work. It’s often unpaid and can be a thankless job - but it’s one of the most important things you can do for people with disabilities. If you’re struggling and looking for support - I highly recommend checking out Victoria’s Substack. Her focus is on the caregiving experience and how to support those in these important roles. To learn more about Victoria check out her article ‘Who Started Carer, Mentor, And Why?
Above all else - know that being an advocate for a disabled patient is an important job. We are entrusting you with our lives while we are in the hospital - and we are incredibly grateful for the care and support you provide us. Being in the hospital is always scary but it is significantly more tolerable when you have someone you trust by your side. Thank you for being that trusted person - I know I’m forever grateful to the people who’ve been advocates for me.
Are you an advocate or a caregiver? Have you been in a situation where you struggled with how best to advocate for a disabled loved one? Comment below - I would love to hear others experiences.
Everyone needs to read this, an insightful VERY real description of the state of health systems. This mirrors the situation in the UK.
I would urge anyone to think about their parents and elderly frail relatives/friends too
Also, don't assume 'this won't happen to me' - this was posted on BBC news yesterday: https://www.bbc.co.uk/news/articles/cy792l78w2jo
Thank you for this helpful article. I’ve recently been asked to be an advocate for a family member but I have very little experience with hospitals, chronic illness, and disabilities. I’m going to share this with her and hopefully together we can come up with a good plan!