L.icenser, employers and others asked me about my status: disabled or not disabled?
When I first read this question on my new job onboarding forms, I was impressed with the consistency and dichotomy implied between the two possibilities.
At the same time, I also appreciated that the impetus for this request was the Americans with Disabilities Act (ADA), which had protected me throughout my internal medicine residency. This pioneering piece of legislation prohibits discrimination and promises reasonable accommodation for qualified individuals with medical, physical and / or mental disabilities.
The ADA came into force in July 1990 and made it possible for me to celebrate its introduction with a rite of passage for me as a doctor: On July 1 of this year I became a Fellow from the intern in general internal medicine. This rise in rank brought me new roles and responsibilities, which also led to a change in my status from disabled to non-disabled.
Before I started my medical career, I had started collecting a number of autoimmune diseases. Fortunately, they had given me more courage than grief, and disability had never had to be part of my identity. That is, only after I have completed my medical degree and started my internship and specialist training.
During the transition to the internship year, I remember the high pile of induction papers. My program’s occupational health office invited me to sign an additional document requesting ADA-related adjustments to my schedule. Instead of working 30-hour shifts that were clocked every few days, I would instead work serial shifts of 14 hours (either days or nights).
All parties agreed to the proposed changes, which meant I signed a form marking me as disabled. I still had the same working hours as my colleagues, but in a different distribution. Most of my colleagues did not know that I had received this accommodation. This was partly because my health and performance hadn’t deteriorated; Limiting my shift hours was a preventive measure that was right for me. I also understood that schedule changes are quite common within residency programs – think parental leave.
But as I got used to this new label, I began to pay more attention to language and disability discourse. On the rounds, when reviewing diagnostic studies or complex physiology, I noticed when team members said to me, “This is what the pulmonary function tests would look like on a normal person like you and me.”
Sometimes I wondered what, in their eyes, earned me the status of normal or non-sick. Was it my behavior, my abilities, my talents? The college degrees embroidered on my white coat? I was partly flattered, but mostly concerned, that such features or symbols might be inconsistent with the underlying pathology, let alone a disability.
Although human brains are hardwired to make quick judgments, we can still deconstruct the stereotypes that associate impairment with overt dysfunction and suffering. This is one of many important tenets of the global social movement that inspired the ADA and that continues to this day.
This movement asks us not only to open our minds, but also not only to welcome people with disabilities but also to celebrate them; instructs us not to treat equal access as an administrative burden but as a citizen’s right; and invites us to enjoy the tremendous benefits of diversity, including the opportunities for innovation stimulated by the need for housing.
Unfortunately, the medical community is lagging behind. Indeed, proponents and scholars of this social movement have suggested that doctors tend to simplify the concept of disability in ways that perpetuate prejudice and underestimate the quality and value of living with disabilities. For example, a doctor may decide not to recommend diagnostic or therapeutic intervention if he or she believes that the result could lead to an “unacceptable” quality of life for the patient. Risk assessment is a critical part of the job, but doctors sometimes assume they are also making formative judgments about the kinds of lives that are “worth living.”
Disability bias in medicine is linked to an ongoing problem of underrepresentation. Even 25 years after the ADA went into effect, less than 3% of students in medical schools in the United States have a disability, compared with nearly 12% in post-graduate degrees. This difference is due in part to the romanticized reputation of medical education, which glorifies the stay as rigorous and unforgiving. This is how this reputation influenced me:
As a medical student, I was aware of the ADA, but I hadn’t seen it in-game for residents or faculty. When it came time to apply for a residency, I hesitated to consider top institutions for fear that my health would collapse under their 30-hour call structures. In the end, I still rated her high. I was relieved and surprised when I found out after the matchday that dates could be adjusted.
This is not intended to highlight any structural feature of medical training. Rather, my aim is to raise awareness that a persistent lack of disabled medical role models signals that impairments are either undesirable or incompatible with the demands of the profession. A lack of diversity will only perpetuate the stereotypes and prejudices that need to be broken.
Some may argue that medicine can afford to only select applicants who do not need placement, since medicine is a competitive and demanding career. But this train of thought only goes on to show that society’s ableist tendencies can be insidious and deep-seated. Fortunately, my time caring for patients has shown me that through increased and deliberate empathy, people can uproot misguided views.
Covid-19 made this possible. As the coronavirus spread in the United States, many healthcare workers were put into a new group: those at increased risk of serious illness. Suddenly, employees who were older, pregnant, obese, or living with diabetes, compromised immunity, heart or lung disease were part of a cohort designated by the CDC for which at least special precautions were being considered – a cohort whose newly revealed Disability Status also resulted from a change in context rather than a change in diagnosis or symptomatology.
Another transition took place when the FDA signed emergency agreements for Covid-19 vaccines. The strengthening of immunity enabled most healthcare workers to return to normal working conditions.
These are just two ways the pandemic has shown how dynamic and permeable the distinction between diagnosis and disability can be. The pandemic also challenged us to appreciate the diversity of experiences people with disabilities have. Would it feel any different to be accommodated as a member of a recognized group than as an isolated individual? What if some of the faces in this group were among the most respected leaders in the ward? And could people react differently if disabilities are viewed as context-specific and not as an intrinsic or permanent state of being?
The evanescence and obscurity of my own experience with disabilities has made it so that I don’t have to be an outright advocate in this arena, but I chose to do it. That is why I invite others – especially doctors – to work with me to analyze preconceived notions about what disability means, how it looks and feels.
And I urge my profession to take advantage of this pandemic-related opportunity to publicize its ability and willingness to offer workplace accommodation as a viable starting point for greater representation of people with disabilities in our field.
Because there is no better time than now for medicine to redefine itself as a culture that is diverse, a flexible environment and an accepting community.
Maggie Salinger recently completed her internal medicine residency at Duke University and is now on a Harvard Medical School scholarship in general and primary care at Massachusetts General Hospital.