Ableism is a Health Hazard
Physicians with lived experience discuss how they had to confront their own internalized biases
By Stuart Foxman
Dr. Lynn Ashdown divides her life into before and after Wednesday, November 27, 2013. That day, she was nearing the end of her residency in family medicine. It was snowing — the first big storm of the season. By 11 that morning, more than 20 cm of snow had fallen. Dr. Ashdown recalls the weather and arriving at work for an OB/GYN rotation. Her next memory was emerging from a coma in the ICU several days later, not knowing how she got there.
Here’s the part she didn’t remember: having no clinical duties that afternoon, Dr. Ashdown drove to a coffee shop. “It was normal for me to study there.” She had her gym bag in her car and from there she was going to go workout.
At the shop, Dr. Ashdown was on a stool when she experienced cardiac arrest. She found out later that it was due to Long QT syndrome, an undiagnosed congenital heart arrhythmia. Paramedics responded to a 911 call in minutes and resuscitated her. When her heart stopped, she toppled from the stool. “It was a dead weight fall,” she says.
She suffered skull and cervical fractures, plus a moderate traumatic brain injury.
Dr. Ashdown was transported to the Civic Campus of The Ottawa Hospital, the local designated trauma centre, in the midst of a full body seizure. “I had done training there. I can visualize what the code would have looked like.”
She spent two-and-a-half years as an in-patient. It also took that long for her to even contemplate the consequences of the accident on every aspect of her life. That was partly because she was focused on her recovery and partly because her brain injury didn’t give her the capacity to absorb everything. She even had to learn to talk again. “I could hardly string two words together initially.”
Today, she uses a wheelchair and has complex medical needs. “To the point I’ve been told the only reason I can live independently is because of my medical training. I really needed a medical degree to take care of myself,” says Dr. Ashdown.
For her, the wheelchair is merely the most obvious sign of having a disability. People don’t see the rest: impacts on her cognitive abilities and working memory, depression, and PTSD from the accident and navigating the health care system ever since.
She has also come to realize that she absorbed society’s attitude of disability as a deviation of the norm even as she has become a disability rights advocate. Preconceived notions about or prejudices against people with disabilities can be so ingrained that you might not even know you hold them, she says.
“Rather than embracing the beauty that can be disability, I can hold myself to a different standard than what I’m advocating for other people,’ says Dr. Ashdown.
Devaluing and Limiting Potential
What is ableism? The Ontario Human Rights Commission has defined it this way: “An ableist belief system often underlies negative attitudes, stereotypes and stigma toward people with disabilities. Ableism refers to attitudes in society that devalue and limit the potential of persons with disabilities.”
In reality, there’s no objectively true distinction between ability and disability, says Dr. Lisa Freeman, a public health physician at Indigenous Services Canada in Ottawa, and someone with lived experience. (She uses a wheelchair, but shared more of her professional than personal insight.)
“We’ve decided as a society what counts as ‘normal’ and ‘abnormal’,” she says. “It’s so baked into society, so systemic, that it’s like a fish swimming in water. We just have these implicit biases.”
In a similar way to racism, sexism and homophobia, ableism defines people narrowly based on one aspect of their identity and can see them as less worthy. Ableism is a form of discrimination based on the belief that typical abilities are superior.
The medical model of disability centres on correcting or mitigating a defect in or failure of a bodily system. It is a problem to be solved. The assumption is that people with disabilities need and want medical interventions to improve their life.
The belief that people with disabilities have a diminished life is prevalent in society. Do doctors themselves feel that way? Dr. Freeman points to a study published in 2021 in the journal Health Affairs, where 82 percent of doctors surveyed said people with significant disabilities have a worse quality of life than non-disabled people.
Such attitudes can influence the nature of, access to and continuity of care that people with disabilities receive, says Dr. Freeman.
She points to research showing that some doctors are less likely to offer people with disabilities certain care, like preventative screenings, assuming it’s not worth it. Doctors might also make assumptions about what patients with disabilities would benefit from, or what they can and can’t do (i.e., as part of a treatment or recovery regimen). All of that can stereotype or reduce options for patients with disabilities.
Disabilities can be physical or mental, visible or invisible. They may or may not be disclosed and documented. They can be temporary, fluctuating, progressive or permanent. Every physician encounters patients with disabilities. Yet, Dr. Freeman notes physicians often have limited and limiting attitudes about them.
What becomes harmful, she says, is seeing the disability before they see the person, making assumptions about what the condition means to and for the person, having narrow views of independence and autonomy, and thinking people with disability are a burden (in general and in terms of their clinic).
Indeed, the survey reported in Health Affairs found only 41 percent of doctors were very confident about their ability to give the same quality of care to patients with a disability and only 56 percent strongly agreed they welcomed such patients into their practice.
Dr. Caroline Bowman, a family physician who practises in Wasaga Beach, also grappled with ableism. “To me, it’s the idea that having an ‘able body’ is the preferred way of being,” she says.
Late in the day January 18, 2017, while working on charts at her desk, she noticed numbness in her left thigh. At first, she suspected it was meralgia paresthetica, a benign compression of the nerve that would usually go away by itself. But by the next morning, her entire leg was numb. And by the following day, she was numb from armpit to foot.
“It was the classic presenting pattern of MS,” says Dr. Bowman. In the moment, she couldn’t help but think of an aunt who had multiple sclerosis (MS) and died of its complications in her 50s. “It was pretty scary.”
Within a week, tests confirmed an MS diagnosis. Dr. Bowman’s numbness cleared up soon enough with steroids, but she experienced a relapse in the fall of 2022. Due to leg weakness and numbness in both feet, she has needed to use a walker and a wheelchair at times. Fatigue remains the biggest symptom. Because of that, she has had to step away from her practice for now and resign some leadership roles.
Dr. Bowman has grappled with understanding her relationship with the word “disability” and says she’s just at the beginning of learning what ableism is all about.
Intellectually, she understands the nuanced view that there’s no such thing as a “perfect, able body.” Still, she’d prefer to have her previous mobility and energy, and to not have MS. She feels shame around having to cut back on her practice, and knows it’s because one’s worth and work are so connected in medical culture and society.
When she was admitted to hospital due to her relapse, she was using a walker. The neurologist and physiotherapist told her how well she was doing with it. Was this all that was expected of her now? Didn’t they know that only two weeks earlier she was hiking up a hill? “That was probably me being ableist.”
What helped Dr. Bowman wrap her mind around the concept of ableism was reading a book called “Sitting Pretty” by writer, teacher and disability advocate Rebekah Taussig. It included this passage:
“Ableism is the process of favouring, fetishizing and building the world around a mostly imagined, idealized body, while discriminating against those bodies perceived to move, see, hear, process, operate, look or need differently from that vision.”
When present in medicine, ableism can have profound consequences on care and the care experience.
Dr. Ashdown has been stuck on an exam table, in a room alone, because her wheelchair was moved out of the way. It’s not an inanimate object to her, but rather an extension of her body, she says.
Once, while in hospital, she was catheterized for 72 hours. It was unnecessary. “All I needed was a transfer bar to get to a toilet.”
But the bar had come down and hadn’t been replaced. After three days, Dr. Ashdown was so distraught that she told the charge nurse that she was going to leave and be admitted into another hospital. Finally, a bar was put up. She calls the experience “dehumanizing.”
Once, while at a diagnostic imaging centre, she was shown a small room and told to change into a gown. When Dr. Ashdown pointed out the room was too small to accommodate her wheelchair, she was told to change in the hallway.
Negative experiences like these can have a psychological impact and perhaps lead some patients with disabilities to avoid care in the first place.
Dr. Ashdown has been working to combat ableism and inequities, using what she has learned about medical practice as a student, doctor and patient. Eight years after her accident, she earned a Master’s degree in medical education. She is a member of the Equity in Health Systems Lab and serves as a Patient Partner — Lead Advisor with the Association of Faculty of Medicines of Canada. There, her role is to improve medical education by “harnessing the expertise patients have through their lived experience.”
Ultimately, doctors shouldn’t lack for expertise in seeing and understanding the needs, hopes, worries and wishes of members of any population. That expertise exists in the patients in front of them. What do patients require? Just ask and listen.
“One thing I’ve learned since I’ve become a patient is that the practice of health care is not black and white. It’s mostly shades of grey,” says Dr. Ashdown. “What works for one person might not work for another. The way we’re taught is we have algorithms on how to treat things. But it really is individualized. There is no standard approach.”
She says that when she was at the end of her residency, with all of her training fresh in her mind, she still wouldn’t have been fully prepared. The aftermath of her accident revealed what’s often absent in medical practice.
“My medical education taught me about disease and illness. My patient experience is teaching me what it means to be ill. They’re two very different things. How could I know so much about medicine, yet feel so lost as a patient? We’re missing something — the lived experience and patients being an equal stakeholder. They know best what they need.”