In my medical school admissions essay, I wrote about helping at-risk kids like myself. I wanted to be a child and adolescent psychiatrist, but that wasn’t the main reason for applying. The real reason I applied was for my own personal survival. I needed to learn how to talk to doctors about my symptoms and get an appropriate level of care.
For years, my doctors told me that my illnesses and pain were caused by stress; in my gut, I knew a diagnosis was behind it. With the help of the medical education I received, I worked closely with my doctors and was diagnosed with multiple autoimmune disorders and am now receiving treatment.
As a student with disabilities, I could once again function and become a doctor to help those kids, or so I thought.
My first experience with discrimination in medical education involved the white coat ceremony before orientation, which included a recital of the Hippocratic Oath. It was a ritual I was not comfortable with but forced to perform on that fateful day. The Hippocratic Oath is mentioned as an ethical standard, yet it was formed on the basis of a caste system that denied others basic human rights.
From then on, I saw discrimination everywhere, marked as a proud badge of honor to becoming a physician. It was a glaring problem, in my opinion, that I wanted to fix, but without the power or support to voice my opinions that it needed to change. In the back of my mind, I was hoping that it was more of a tradition than a way of life in medicine.
To my dismay, as I navigated the complexities of medical education, I sought others like me in the field and found them, mostly hiding their disabilities, far removed or absent from the sphere in which they were experts. Instead, replacing them were ultra-healthy and physically fit medical doctors without personal knowledge of “abnormal” and limited relatability to patients with disabilities or chronic illnesses.
Once the COVID pandemic was upon us, I was mortified by discussions in medical circles about medical futility, and how to choose which patients receive precious resources, such as medicine and ventilators. I was horrified and scared to realize that doctors think that they should pick those who were worthy of saving. They discussed making these decisions based upon a patient’s functional status, chronic health conditions, age, among others, rather than talking directly to their patients about these life decisions.
This meant that at least 40 percent of American lives could be compromised by someone who personally knows little about their illnesses, disability, and preferences for care. People with disabilities are not surprised to hear this, as they have experienced this cruelty before. And I was just beginning to see the perils they face on their journey navigating medical care.
Throughout history, people with disabilities have been discriminated against and mistreated in medicine, despite the profession’s standard of benevolence. Reports of physicians using their power over those with disabilities include cases of neglect, involuntary institutionalization, forced medical procedures such as sterilization, denial of life-saving medical treatment, and abuse. Although modern society has shunned these acts as human rights violations, discrimination still takes place covertly and is accepted in the culture of medicine.
Discrimination in medicine starts with medical school admissions. Technical standards ensure denial of applicants with a lack of “normal abilities.” This view, termed “ableism,” believes that providers who cannot meet these exclusive high standards are devalued, and are not fit to be physicians. Although not based in scientific research, these standards exclude people with disabilities from becoming doctors. Recently, the American Association of Medical Colleges has denounced these standards, and now recommends medical schools changing them to reflect inclusivity.
Subsequently, student classes do not fully represent the disability community, as only a roughly estimated 1 to 2 percent of medical students are disabled. Those that make it in with disabilities, face discrimination at every step along the way. Schools review accommodation requests from students internally, in private meetings, on the basis of whether the requests are “reasonable”. Grading is determined by comparing students abilities against other “normal” students.
Physicians are unaware of the Americans with Disabilities Act (ADA), and some believe medicine is not bound by the law, further compounding the discrimination. In addition, there is a lack of training in disability cultural competence, leading to ignorance of providers as well as the hesitancy of current doctors with disabilities from speaking out in fear of professional stigma and bias. This leads to continued discrimination while in training and beyond, ultimately affecting patients in the end.
Many patients with disabilities fail to receive the care they need, and when they do receive care, it is ineffective and inappropriate. Consequently, people with disabilities have poorer health and use a larger proportion of health care than their counterparts who are not disabled. A deep distrust for medical institutions by those with disabilities has thus followed. The statistics are so appalling that the Federal Government issued a “Call to Action to Improve the Health and Wellness of Persons With Disabilities” and the “New Freedom Initiative that specifically calls for doctors “to have knowledge and tools to treat people with disabilities holistically and with dignity.”
Some argue that standards ensure minimal competency, protection of patients, fair judgement of skill and non-preferential treatment. While they initially intended to ensure an exclusive and high standard of training for physicians, in reality, it excludes people with disabilities from participating in medicine which negatively impacts patient care.
Instead, disability cultural training needs to be incorporated into medical school curriculums, with steep fines for those institutions failing to graduate students with disabilities.
At some point in their lives, everyone will likely become disabled, so we must welcome those with different abilities and attempt to provide everyone with an absolute minimum of care. Additionally, patients believe a provider who they can identify with will provide better informed care over a healthy, fit physician.
There is a moral imperative to convert medical education into an inclusive enterprise for those with disabilities, as patients, co-workers and the government will continue to insist that this goal is advanced in the interest of all. If not to protect our patients and our profession, then to save our co-workers and ourselves.
Letitia Tomaszewski is a medical student.
Image credit: Shutterstock.com
