Combating Medical Ableism

By Giuseppe Floccari

Giuseppe Floccari in New York City, NY in front of the “Love Wall.” Photo credit: Rick Guidotti for Positive Exposure.

Medical training needs to change and people with disabilities can help doctors fill the gaps. Take the standard doctor’s visit, for instance. It begins with the patient and the doctor meeting first. Names and pleasantries are exchanged, then the doctor begins an examination. However, this is not always so. It’s been my personal experience that the first question the doctor asks is not “How are you feeling?,” but rather “What year were the amputation procedures performed?” Or “Do you have all five fingers in both hands?” And the ever so popular, “Were you a thalidomide baby?

Addressing the bias

Though the practice of medicine has changed over time as diagnostic techniques and therapeutic treatments evolve, the art of medicine remains constant because human nature is unchanging. The negative stereotypes about disabled people persist in the healthcare community. There’s the assumption of significant suffering, hardship, morbidity, and disadvantage. Or the belief that the disabled are inherently vulnerable and have low competence. 

Nevertheless, an accomplished doctor must have a bedside manner that is humane, compassionate, empathetic, and supportive. Unfortunately, it has been my experience that many doctors are unaware of their subtle medical ableism.

Giuseppe Floccari photographed by Rick Guidotti for Positive Exposure

Ableism is so subtle and implicit that it’s not even seen as an oppressive practice. I see it when I go to visit my doctors. With their long education and specialization, doctors assume they are the quintessential experts on all things medical. They forget that any decisions about treatments concerning my disability or any related ailments should be made by me. And they assume they’re the only ones with enough knowledge and credibility to decide what is going to happen to me going forward. 

In assuming expertise, many ignore the fact that I’ve spent a lifetime with my condition. I was born with thrombocytopenia-absent radius (TAR) syndrome.  TAR syndrome occurs in utero and is a rare mutation of fusion between X&Y chromosomes. Affected people have a reduction in platelets, blood cells involved in clotting.  TAR is also associated with bilateral radial aplasia. My disability is a birth defect that affects the radius bones in both forearms. It includes defects where the bone is not present or shorter than usual and results in an abnormal appearance of the arm. 

…the assumption that people with disabilities have an unsatisfying quality of life is not only preposterous but is the very essence of the notion of ableism.

I truly believe that doctors and other health care workers need to recognize their subtle biases. The mistreatment and systematic oppression of people who identify as disabled within the medical community needs to end.  And the assumption that people with disabilities have an unsatisfying quality of life is not only preposterous but is the very essence of the notion of ableism.

People with disabilities are experts too

Medical professionals have, at one point or another, been laboratory science students with deficient basic bedside skills. Their teachers are senior clinicians who pass down the same medical and diagnosis techniques they learned from the same textbooks. I truly believe that individuals with disabilities should be present in the teaching process. Be it in the classroom or onsite, disabled people should no longer be test subjects, but teaching tools for new doctors.  

Giuseppe Floccari photographed by Rick Guidotti for Positive Exposure

The presence of a person such as myself can be used not only as a visual tool but as a learning tool in combating medical ableism. Small group seminars hosted by individuals who are disabled, discussions on ableism in medicine, and disability sensitivity training should all be part of the curriculum. This curriculum should also cover how to properly engage and interact with people who have a disability, how to overcome habitual bias in social situations, and assist in the education of others and speak up when ableism occurs. 

People with disabilities represent the largest group of minorities in the world. It is extremely unfortunate to have medical professionals still miss the mark when it comes to dealing with people with disabilities as they are experts on their bodies, minds, and access needs. Any collaboration between the two worlds will lead to effective health care and a brighter future for people with disabilities.