Doctors must challenge ableism in healthcare
BMJ 2023; 383 doi: https://doi.org/10.1136/bmj.p2968 (Published 20 December 2023) Cite this as: BMJ 2023;383:p2968
Today, people with disabilities continue to be unfairly overlooked and discriminated against—whether that’s in terms of employment, education, media representation, or relationships. If you’re disabled, people assume that you lack the required elements for full participation in society. Disabilities are consistently seen as synonymous with deficit, tragedy, and loss. It would be wrong to assume that doctors and allied healthcare professionals are immune from these systemic prejudices. If our medical system wants to enhance care for disabled patients it’s imperative that we tackle these outdated misconceptions.
In recent years society has become more mindful of the shameful grip that unconscious bias has on us and how our attitudes and personal judgments towards people may be influenced by the stigma surrounding certain identities. Racial bias, for instance, infiltrates nearly every branch of the healthcare system: notable examples include obstetrics, where maternal mortality is four times as high in black women as in white women.1
But, when it comes to challenging deep rooted social prejudices, the disabled community is often disregarded. Inevitably, this can lead to serious healthcare inequalities. It may negatively affect everything from rates of diagnosis, treatment opportunities, and reproductive care to communication with medical staff and overall patient satisfaction.2 I believe that a greater, more nuanced understanding of disability will vastly improve standards of care for the UK’s ever increasing population of disabled people.
Unfounded assumptions
Healthcare professionals will too often make unfounded assumptions about a patient’s quality of life on account of their disability.3 A 2021 study found that 82% of doctors in the United States believed that people with disabilities had worse quality of life than non-disabled people.2 This reality was laid bare during the covid pandemic, when people with disabilities faced disproportionate challenges in access to critical healthcare, although this was already a longstanding issue.4 And research showed that the stigma around disability had a tangible effect on a patient’s prospect of receiving critical care.5
Another example is seen in breast cancer care. Doctors may assume that women with disabilities who have early stage breast cancer favour mastectomy over breast conserving surgery.6 This thoughtless, speculative judgment underlies the myth that women with disabilities don’t care about their physical appearance like other women. If doctors were sensitive to the fact that having a disability doesn’t preclude an interest in one’s body image, this would help to stop disabled patients feeling dehumanised, inferior to others, or lacking in femininity.
Anecdotally, I’ve heard accounts of a wheelchair user being redirected out of a sexual health clinic after medical staff assumed that she was lost and were in disbelief when told otherwise. In another case, a wheelchair user was told by her doctor that she was incredibly lucky to be in a romantic relationship. For the most part, this isn’t intended maliciously but rather stems from an appalling lack of empathy, sensitivity, or insight into the lives of people with disabilities. It’s demoralising to encounter “othering” and hurtful stereotyping from people in the health profession who you hope would understand more than most.
Awareness of disability related issues is clearly inadequate among some medical professionals. This lack of knowledge must be tackled on several fronts. Change begins with targeted training for healthcare professionals; providing disability advocates in healthcare settings to ensure that patients feel heard and that their rights are respected; removing physical barriers to accessibility; and providing disability inclusive communication, such as using text based interfaces instead of phone calls. More generally, however, it requires an enhanced understanding among clinicians about what being “disabled” really means.
Collective responsibility
One foundational principle in disability rights outlined in my new book, See Me Rolling,7 is that disability is a socially constructed phenomenon. In other words, it’s not only someone’s biological make-up that classes them as disabled. Rather, disability is defined by our built and cultural environments that specify what a “normal” body should be able to accomplish.
This idea was introduced in the 1980s by the academic Mike Oliver, who coined the term “social model of disability,” which advocated for disability to be treated as a social issue rather than a medical problem. To give an example from the perspective of someone with a muscle weakness disability, if a chair seat is low down I must exert a lot of effort to stand up from sitting, and I feel the effects of my disability. Whereas, if the seat is higher up, I can stand up seamlessly. The design and infrastructure around us determine how people with disabilities navigate their daily lives. And we can apply this theory to healthcare. The way medical services are delivered—everything from the design of hospital buildings to the attitudes of staff—can limit people with disabilities more than their physical condition.
This simple shift in how we think about disability can revolutionise our attitude towards disabled people—shifting the “problem” of disability away from the person experiencing it and making it the collective responsibility of society, including healthcare. I’m confident that we can challenge ableism in the medical system by taking time to consider and empathise with disabled service users. When any healthcare policy is made we must think of people with disabilities first, not as a marginal afterthought.
Representation will be key to this, whether it means giving disabled people a central role in designing healthcare services or increasing representation of people with disabilities working in medicine. If you open up the world to make it more accessible for people with disabilities, you make it more inclusive and efficient for everybody.
Footnotes
Competing interests: None.
Provenance and peer review: Not commissioned; not externally peer reviewed.