A study led by Harvard professor of medicine, Dr. Iezzoni, published in Health Affairs in 2021 determined that out of 714 practising US physicians, only 41% of doctors felt very confident that they could provide the same quality care to their patients with disabilities as they provide to able-bodied patients. Not only is this statistic striking, but the same study discovered that 82% of them felt that people with “significant disability” have a worse quality of life than able-bodied people. Those are some heavy statistics to unpack. With my own experience of ableism, these numbers make sense to me, and the narrative of my personal experience supports this. The big question that remains is: Why is healthcare so ableist?

Keep in mind that ableism is not the only barrier to accessing healthcare that is present; intersectional identities further complicate and can threaten the care of patients. There are racial disparities in healthcare that put patients at a disadvantage, as well as discrimination and disparity based around gender, sexuality, religion, nationality, age, language, class, status, and other identities. 

First, let’s break down what a specific appointment with a new gastroenterologist looked like for me. The barriers were present before even starting the appointment due to a lack of accessibility. When getting into the clinic, the reception counter was too high, so in a wheelchair, I couldn’t be seen by reception staff. Having to knock on the plexi-glass just to be seen is a dehumanising experience that upholds an ableist standard of care and shows that disabled patients are merely an afterthought in clinic design, if they are even considered at all. For other disabled patients, these barriers look like only being able to book appointments over the phone, not providing prescriptions or pamphlets in large print, and having bright lights with an overstimulating waiting room environment. 

When I started talking to the receptionist, I was talked down to, as if I was a child instead of the adult that I am. I didn’t think much of this, but then the next patient, who was near my age, walked up to the desk and was talked to in a regular voice. Immediately it clicked: being in a wheelchair made the receptionist infantilize me. Whether it was a conscious decision or not, she had made the connection that because I was in a wheelchair, I had a lower cognitive ability. 

Once the appointment started, I didn’t feel comfortable that I would receive adequate care with this unfamiliar doctor, and I had reason to feel this way. Within the appointment, I experienced diagnostic overshadowing. The doctor was too focused on my disability that they missed a diagnosis for an unrelated concern. This looked like being prescribed an antidepressant because the doctor thought that my digestive issues were the result of stress, when the cause was actually the early stages of intestinal failure. A month after the appointment, I didn’t feel comfortable enough to go back to this doctor when my condition worsened. I felt like I would be judged and held to a different standard based on my disability. By not trusting that doctor, my condition dramatically worsened and left me dependent on IV nutrition, which could have been avoided with an earlier intervention.

These instances of ableism drastically impacted my care. What is it about doctors that exacerbates the prevalence of ableism? For most physicians, it’s the very reason that they got into medicine: to cure patients and return them to being “productive” members of society. According to the medical model of disability, a disability is an abnormality or deficiency that an individual has. This can be compared to the social model of disability, in which  the limitations of a disabled person are due to a lack of an accessible environment. 

Unfortunately, most doctors see patients through the lens of the medical model of disability. Thereby, a disability is something that a doctor has to “fix” so that the patient can contribute to society (gross, right?). What is missing from this concept, is that disabled people can live productive, fulfilling, and meaningful lives with a disability. When physicians can’t “cure” a disability, they have to face the death of their own ego, as well as their own mortality, and often, they don’t handle this well. 

To able-bodied people, these statements and statistics might seem unfathomable, but this is the reality that nearly anybody with a chronic illness or disability can attest to. As unfortunate as how that appointment turned out, ableism in the healthcare field can have life or death consequences.

I’ve consistently remarked that the medical system is built for patients with “quick fix,” acute illnesses. When a patient doesn’t fit into a well-defined box, this leads to a phenomenon that is very common among people who have an undiagnosed or rare condition: medical gaslighting. This more commonly affects patients who identify as female, as healthcare professionals don’t take their symptoms as seriously. If a physician doesn’t easily understand the cause of an illness or the presenting symptoms are not easily explainable, it is common for them to blame it on the patient’s own faults instead of acknowledging that they do not know the answer. For me, this has looked like a blood infection being misdiagnosed as the flu, before it led to sepsis because I wasn’t treated quickly enough. Missing more severe diagnoses can prolong the time it takes to receive treatment and can even worsen disease progression, as well as lead to a loss of trust in the entire medical system. Ever since those experiences, even when experiencing severe and life threatening symptoms, I don’t trust that I will be taken seriously by medical professionals. So, I avoid them all together until it’s life or death. 

Let me make this clear, ableism in the medical field has real and life-threatening consequences. It needs to be addressed so that the physical accessibility barriers can be removed, thus providing healthcare access for all. Experiencing positive, affirming and validating appointments shouldn’t be the exception to the rule; it should be the standard of care that meets the bare minimum. Medical professionals need to be held accountable, especially to their unconscious biases. This way, everyone, regardless of ability, can access the quality of care that is deserved.