“Wow, lucky you,” she said sarcastically. I was at an appointment and had just explained the inheritance and genetic mechanism of my rare skeletal dysplasia to the new orthopedic resident.
As a genetic counselor with a genetic condition, I’m used to knowing more about my diagnosis than anyone else in the room. I’m also used to the assumptions and limitations placed on me by medical providers.
“Yes, I’m very lucky,” I replied, without skipping a beat. “I have an amazing partner, wonderful family, a career I’m passionate about. I love my life.”
The assumption that disabled people have a poor quality of life is widespread, including among medical professionals. A recent study found that over 80% of doctors rated the quality of life for their patients with disabilities as low. (Iezzoni, et al., 2021)
The conversation with the orthopedic resident was far from my first experience encountering this attitude. Once when seeing a new doctor for hip and shoulder pain, I was told, “Well you’re already in a wheelchair, how much worse could you get?”
There is also the more insidious but prevalent reactions of shock when a new provider discovers that I work at their institution; that I am planning my wedding; that I sing in a community choir; that I’m an avid swimmer and exercise regularly; that my life isn’t 100% about my disability.
In a global pandemic, where there are emergency triage protocols, these attitudes are not just annoying, they are dangerous. Doctors who view people with disabilities as having a lower quality of life may be less likely to fully investigate symptoms or offer all treatment options (Shapiro, 2020).
Over the past several years, our profession has begun to look inward to confront racism, homophobia, transphobia, xenophobia and ableism. I would like to call on genetic counselors to take this one step further. Next time you hear an assumption about someone with a disability, gently challenge it. For example:
- In response to “this patient uses a wheelchair, they must not exercise,” you could mention the adaptive sports clinic you saw advertised at your local gym.
- “This patient with chronic illness/pain must stay in bed all day” could be met with wondering aloud what creative outlets they have discovered or if they engage in online advocacy.
- “This patient has intellectual disability so I shouldn’t ask about sexual activity” could be an opportunity to share about the young couple with Down syndrome on the news who announced their engagement.
Genetic counselors work with patients often dealing with difficult diagnoses, debilitating symptoms and loss. Confronting ableism doesn’t need to ignore these realities. It simply challenges us to remove our own assumptions about the impact of a condition or diagnosis. It allows us to celebrate the full diversity of humanity and human resilience. It is an appreciation of the fact that wellness and happiness can be worked towards regardless of ability or disability, if the right support, medical care and accessibility exist.
Iezzoni, L. I., Rao, S. R., Ressalam, J., Bolcic-Jankovic, D., Agaronnik, N. D., Donelan, K., . . . Campbell, a. E. (2021). Physicians’ Perceptions Of People With Disability And Their Health Care. HEALTH AFFAIRS, https://doi.org/10.1377/hlthaff.2020.01452.
Shapiro, J. (2020, December 21). Oregon Hospitals Didn't Have Shortages. So Why Were Disabled People Denied Care? Retrieved from NPR: https://www.npr.org/2020/12/21/946292119/oregon-hospitals-didnt-have-shortages-so-why-were-disabled-people-denied-care