Ableism in the Medical Community

After last week’s post about disability, I decided to continue reading on this topic. I have heard the term “ableism”, and while I have a vague idea about what it means, I wanted some clarity and deeper understanding. From what my patients tell me, the more visible their disability, the less likely the medical community is to actually listen to their concerns and take them seriously. This pans out in the research too – people with cognitive disabilities are way less likely to be accurately diagnosed with physical illness, and people with spinal cord injury are way less likely to be accurately diagnosed with cognitive impairment. People with cerebral palsy are actually 3x more likely to experience an adverse medical event than are people without communication difficulties [1]. So what gives? What a patient has extra complexities, like someone with a disability often has, wouldn’t we assume that the medical community would take extra care to consider all possibilities and think a little more in depth, since there are more factors at play?

According to the Center for Disability Rights, ableism is defined as “a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or another. Ableism is intertwined in our culture, due to the limiting beliefs about what disability does or does not mean, how able-bodied people learn to treat people with disabilities and how we are often not included at the table for key decisions.” At the heart of ableism is the paradox that I discussed last week. Because people in medical professions are so honed in on identifying impairments, we can often miss the bigger picture of the actual human person sitting in front of us, telling us meaningful information about their own lived experiences – information that is critical for diagnosis and treatment decisions.

A fascinating paper[2] breaking down ableism in the medical world explains several mechanisms of patient/provider communication failures that are rampant for people with disabilities. First, the authors point out a phenomenon called testimonial injustice. Testimonial injustice occurs when “a speaker’s testimony is unfairly downgraded in credibility thanks to a prejudice on the hearer’s part.” Central to testimonial injustice is the idea that the speaker’s social identity is the thing that makes their words unbelievable. In the context of ableism, this means that patients with disabilities are not considered to be capable of knowing information, merely because they have disabilities. For this reason, one of my patients requests that I attend all of his orthosis fitting appointments. This patient’s orthotist does not listen when the patient speaks for himself about his needs and experiences. Because the orthotist views this patient through an ableist lens as a person who is not able to be a “knower” of information (despite being one of the most educated and intelligent people I’ve ever met), I have to attend the appointment too in order to act as the socially more appropriate knower. I just repeat everything the patient says, but somehow it is more believable from my able-bodied mouth.

A second mechanism listed in the article is referred to as the “disability paradox”. This term is used to describe the phenomenon by which people who are not disabled rate the quality of life of people with disabilities as much lower than people with disabilities actually do. It’s an assumption that people with disabilities have unfulfilling lives, which people with disabilities know to be untrue. This assumption is magnified in medical professionals, who actually rate the quality of life for people with disabilities as EVEN LOWER than the general public does. This belief, that a disabled patient will have a poor quality of life no matter what the medical intervention, undermines the provider's ability to view the patient with compassion. If the person with disabilities is inherently suffering because of their disability, then there is no way that a medical provider could help. It's impossible to provide good medical care when the patient seems like a hopeless case.

Branching off of this disability paradox, the third mechanism described is epistemic erasure, meaning that certain topics and resources are erased from conversations where they would normally be included, because a provider has made a value judgement that the topics are inapplicable. In the disability world, this surfaces most often when providers fail to ask their patients with disabilities about sexual activity. By assuming that no one with a disability would engage in sexual activity (part of those super unfulfilling lives, right?), medical professionals might ignore normal conversations about safety or avoid even considering diagnoses of STI. By erasing possible diagnoses and testing procedures from consideration, simply because ableist bias prevents providers from considering people with disabilities as actual people participating in actual life, medical errors occur and misdiagnoses occur. This explains some of the troubling statistics at the beginning of this post.

The final mechanism of failed patient/provider communication mentioned in this paper is epistemic derailing, which occurs when a person’s disability is so visible that a medical provider can’t actually see past that to consider anything else. One example of this was told to me by a patient a few years ago. He had applied to be part of a clinical trial for a new treatment of depression. The researchers told him that he did not qualify because he “wasn’t actually depressed – was just sad that he had lost all his ability to walk”. The patient felt that, not only had he lost mobility and independence, but that somehow his depression was somehow invalidated because he had a physical disability.

Combining all 4 mechanisms of failed communication leads people with disabilities have little trust in their medical providers. They may withhold information, knowing that they won’t be believed. And, because providers receive very little if any education about disability perspectives from the actual viewpoint of people with disabilities, providers often aren’t even able to see their blind spots in this area of bias. Education about these mechanisms that perpetuate ableism in medicine is critical in order to decrease the health care disparities for the disability population. If health systems and providers as individuals are serious about improving patient outcomes, it is important to mitigate these mechanisms for communication breakdown and to practice listening to and believing people who have disabilities.

[1] Hemsley, Bronwyn, and Susan Balandin. 2014. "A Metasynthesis of Patient–Provider Communication in Hospital for Patients with Severe Communication Disabilities: Informing New Translational Research." Augmentative and Alternative Communication 30 (4): 329–343. doi:10.3109/07434618.2014.955614.

[2] Pena-Guzman, DM, and Reynolds, JM. 2019. “The Harm of Ableism: Medical Error and Epistemic Injustice.” Kennedy Institute of Ethics Journal. https://muse.jhu.edu/article/736764