Combating Medical Ableism
By: Giuseppe (Joe)
The typical ideology of a person with a disability in conjunction with medical training needs to change. For instance, A standard doctor’s visit normally begins with the patient and the doctor meeting first. In this first meeting, pleasantries are exchanged; names of the patient and doctor are stated, then the doctor begins an examination. However, this is not always so. It has been my personal experience that; the first question that the doctor asks, is, not how are you feeling, it’s, “What year were the amputation procedures performed?” or “do you have all five fingers in both hands?” and the ever so popular question of them all, “Where you a thalidomide baby?”.
The practice of medicine changes overtime as development of better techniques for diagnosis and improved therapies for treatment evolve. The art of medicine remains constant because human nature is unchanging. Nevertheless, an accomplished doctor must have a bedside manner that is humane and compassionate, empathetic, and supportive. Unfortunately, it has been my experience that many doctors are unaware of their subtle Medical Ableism.
Ableism is so subtle and implicit that it is not even seen as an oppressive practice. I see it when I go to visit my doctor’s. It has been my experience that, with their long education and specialization, doctors assume they are the quintessential experts on all things medical. My disability, or any other ailments that may incur due to the disability, its treatment of, or any other decision should be decided by myself only. They assume a role where they are the only ones who are credible enough to have knowledge of my body and to decide as to what is going to happen to me going forward
In assuming expertise many ignore the fact that I have 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. These X&Y chromosomes do not fuse properly and often Thrombocytopenia may occur. Affected individuals have a reduction in the number of blood cells involved in clotting called, Platelets. 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.
With that being said, I truly believe that doctors and other health care workers need to recognize their subtle biases. The treatment of, and the systematic oppression of people who identify as disabled within the medical community and the treatment of patients needs to end. 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.
Medical professionals, have, at one point or another, been just laboratory science students often deficient, or unpracticed in their basic bedside skills. Quite often medical students are taught basic Textbook ONLY medical skills. The art of medicine and techniques for diagnosis are taught by senior clinicians that may have had the same textbook teachings their students may have had. People with disabilities represent the largest group of minorities in the world. It is extremely unfortunate to have medical professionals still missing the mark when it comes to dealing with individuals with disabilities.
Negative stereotypes about disabled people do exist in the healthcare community. A typical stereotype can be that; A disabled person denotes there is significant suffering, hardship, morbidity, and disadvantage, or the disabled are inherently vulnerable and have low competence. I truly believe that individuals with disabilities be present in the teaching process. Be it in the classroom or on site, disabled people should no longer be the test subjects but be the teaching tool for new doctors.
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, ableism in medicine discussions, and disability sensitivity training should all be part of the curriculum. Also, this should include 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. Disabled people 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