Medical Ableism is a Cultural and Institutional Issue, not an Individual Problem

by Marisa Kierra

I was diagnosed with IBS at the age of fifteen, but in the last year my symptoms have rapidly gotten progressively worse. I went from having flare-ups every few months, to every few weeks and then eventually to everyday. The flare-ups and high levels of pain left me hopeless and constantly fatigued. 

My mother and I went on a search for gastroenterologists and acupuncturists. I went into the search anticipating disappointment. Two of the male gastroenterologists I’d seen over the years, and the only gastroenterologists I’d ever seen, laughed at me when I talked about my chronic pain and symptoms. I knew I needed medical help with my worsening health, but I also knew I was more likely to experience trivialization of my health concerns than coming up with an actual treatment plan, helpful medications, etc like I wanted. 

With help from my mom and a family friend, I eventually found both an acupuncturist and gastroenterologist; but I had to wait 3 months to see them since I was a new patient. It’s standard policy for specialists to have a waitlist for new patients, and sometimes these lists are up to a year long. When I saw the acupuncturist, (a woman of color), I expected her to treat me better than the previous doctors. After doing an assessment, she told me I needed to “work on my self sufficiency” and find a gastroenterologist even though I’d told her on multiple occasions I already found one and was waiting to be seen by her.  

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Disabled folks often face micro-aggressions and discrimination from their clinicians. Micro-aggressions like those of my acupuncturist are built on the assumption that disabled people don’t do enough for ourselves and that we aren’t allowed to have standards. I tried to ignore her invalidating comments during the first few appointments because I thought it was unavoidable and because I needed treatment. 

IBS has often impacted my movements, social time and mood so severely that I am not able to go out to eat with those I love as much as I wish I could. The ableism and medical neglect that my doctors display however, are even more hurtful. After a particularly exhausting appointment with my invalidating acupuncturist, I decided to go out to eat with my mom.

Despite my hunger, I was barely able to eat my food. When I tried to eat more, nausea and sharp abdominal pain followed. When I went to my next appointment and explained what happened, the acupuncturist laughed and replied, “well obviously you need to eat less when receiving treatment! Mostly a liquid diet.” That was my last appointment with her. 

The contempt that disabled folks face with incompetent and non-empathetic clinicians is deeply unsettling. I sought help and was literally laughed at, by a third medical professional this time. Being laughed at by folks isn’t a rare occurrence as a disabled person, but I take even more offense because it came from someone who is trained to prioritize my care. This person did the exact opposite.

I’m bitter about missing out on meaningful experiences because of other peoples’ ableism, and my anger is righteous. My contempt from this experience stung for months. Missing out on things due to my disability is extremely frustrating, but ultimately I know that it’s uncontrollable for the most part. However, the ableism doctors perpetuate is preventable.

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When a doctor invalidates me and my experiences, it isn’t just about my feelings getting hurt. (And if it were only about my feelings getting hurt, that would be valid too.) Ignoring the concerns of patients with disabilities can have dire, fatal consequences. I don’t trust ableist doctors to provide the kind of care that I deserve because they’ve prioritized invalidating me instead of offering treatment. These clinicians decide to engage in ableism instead of using their time to discuss medication, side effects, treatment, accommodations, lifestyle changes, etc. 

 The discrimination we face in hospitals is real and when I’ve called out the ableism of doctors, people make excuses for them. They say I should focus on which treatments are being suggested versus instead of how the doctor treats me. They diminish and trivialize the impact of ableism by referring to it as “bad bedside manner” which is just a euphemism that trivializes and ultimately further perpetuates ableism. It hurts and I don’t have time for it.

Disabled patients’ time is rarely valued by medical professionals- the time it takes to find a doctor, schedule an appointment, waiting for the appointment, finding transportation to and from the appointment, and trying to make money to pay copays and bills. The whole process is often dehumanizing and discouraging.

The best way to help and empower disabled people is to center disabled voices on issues related to our disabilities, ableism, and disability rights. Most disabilities and chronic illnesses are life-long. When this fact isn’t acknowledged by medical professionals, it dismisses the embodied knowledge and expertise disabled folks inherit by having different bodies and minds. We live here, in these bodies. We know them best. 

Some words for clinicians with disabled patients:

1. Do right by us.
2. Honor our time. 
3. Treat us with dignity and respect.
4. Hire more disabled people.
5. You can help change the ableist cultural practices inside and outside of the institutions in which you work.