I vividly recall standing with one of my college mentors in front of an iron lung in the lobby of Boston Children’s Hospital. He told me how polio had led to the last disability revolution because people with the disease made the public aware of disabilities and fought for the passage of the Americans with Disabilities Act.
While the ADA was instrumental in protecting the rights of disabled individuals at school and in the workplace, its focus was on those with mobility disabilities, partially due to the large number of polio survivors who used aids like wheelchairs, canes, and braces. This growing population centered these mobility disabilities in culture to the point where a wheelchair became the universal symbol for disability.
As important as it is to advocate for and support the physical accessibility of public and private spaces, an unintended consequence of these events is that disabilities that have nothing to do with mobility are often overlooked in discussions of disabilities and disability accommodation. This extends to medicine, where symptoms are often dismissed or underestimated because they are vague and difficult to characterize, leaving patients without adequate medical or social support.
The Covid-19 pandemic is exposing this lack of widespread understanding and accommodation for individuals with nonmobility disabilities.
I have congenital scoliosis, a disease that kept me in the hospital for most of my childhood. I no longer use any mobility devices, but my misshapen torso and smaller-than-average height hint at my medical history. Because my disease isn’t immediately apparent, most people who meet me likely notice that something is different about me, but don’t realize that I look different because of a disability. Even those who do realize that rarely think about its nonmobility components, such as my reduced ability to clear respiratory infections like Covid-19.
When I used a wheelchair, people often rushed to help me get up the stairs. Now they don’t consider, or initially understand, that I must wear an N95 mask just to see my friends. From my advocacy work in the disability community, I know that my experience isn’t unique.
The link in the public’s mind between disability and mobility has led “hidden” disabilities, such as visual impairment or immunocompromise, often not being included in conversations about accommodation and support systems.
The Covid-19 pandemic has made these misconceptions about what it means to be disabled even more evident. Since March, there have been calls to protect the most vulnerable people from Covid-19. In the wake of news of the tragic spread of Covid-19 in nursing homes, “vulnerable people” now generally means the elderly.
While it is incredibly important to take care of older Americans, the importance of protecting those with hidden disabilities, such as my restrictive lung disease, who are similarly vulnerable to poor outcomes from Covid-19 get lost in the conversation.
This is especially important when talking about populations who are young or thought of as generally healthy, because individuals with invisible disabilities are often included by default in low-risk groups. People in a store cannot see that my spine curls around my lungs and reduces my ability to fight respiratory infections. If my risk was visibly obvious, they might not argue or complain when I ask them to fix their masks.
The lack of discussion around hidden disabilities creates barriers for people experiencing invisible symptoms like pain or fatigue for which there is no provable medical etiology. As reported in The 1619 Project, the history of doubting patients stretches at least as far back as the beginning of slavery in the U.S. In the intervening centuries, before a syndrome or disease is categorized and accepted as “real,” patients with these symptoms have been written off. Chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and fibromyalgia are just a few examples.
It is pivotally important to learn about hidden disabilities now as individuals affected by post-Covid-19 syndrome who need support and advice are having difficulty convincing physicians of their experiences, are facing significant depression and anxiety from the mental toll of this doubt, and are experiencing medical gaslighting. Although this has been portrayed as a phenomenon isolated to Covid-19, those who research, write, and report on post-Covid syndrome are missing the opportunity to highlight the long history of dismissing nonmobility disabilities, especially those that are poorly understood.
Symptoms of post-Covid syndrome include chronic cough, trouble breathing, muscle pain and weakness, gastrointestinal symptoms, brain fog, and more, so it is easy to imagine the support these people need and how damaging unnecessary barriers can be. When seeking medical care, even those with stark symptoms are being required to prove they had Covid-19 with test results, despite the lack of access to testing. These individuals will face additional barriers as they seek accommodation in work, school, and their social lives.
Clinicians are not usually accustomed to talking about states of disability for which there is no clear biomedical explanation or treatment plan. Most people are not accustomed to talking about the barriers that exist for people with nonmobility disabilities. I believe that both of these gaps stem from a lack of knowledge of what it means to be disabled, which can be fixed with education and discussion.
A better understanding of hidden disabilities can improve patient care and accommodation practices in medical facilities, schools, businesses, and other public places. People would feel more comfortable asking their physicians for treatment for fatigue or pain. Workers could more easily ask their employers to change their desk chair, shift time, or work site to help them have the best experience in their career. Students could feel more comfortable asking schools for accommodations other than about the physical environment.
The more we all learn and talk about what it means to be disabled, the more equitable our society can become.
Harry T. Paul is a second-year M.D.-Ph.D. student at the Johns Hopkins University School of Medicine.
Thank you for this thoughtful and insightful article. I have hearing loss. Masks keep me from reading facial expressions or lips. I also have seizure disorder, invisible to most people most of the time. Patience from other people would go a long way, but it seems in short supply right now. We are encouraged to be invisible, I think.
You’re absolutely right. Very well said. I had postural orthostatic tachycardia syndrome as part of a neurological virus, and your current medical school diagnosed the virus after 2.5 years of widespread and escalating neuromuscular, cognitive and autonomic symptoms. 2.5 years of gaslighting and blatant disinterest for my health among doctors at different hospitals. Thank goodness for Hopkins. I’d hate to think that those who survive covid—and endure lasting symptoms—meet the same fate of gaslighting and pitiful access to help and understanding.
Thank you so much for writing this, Harry. I have both ME/CFS and POTS and feel seen by you. We need more people like you (who have histories of health challenges and know what it’s like to be the patient, and the one with a hidden disability) to become doctors. I have been volunteering with #MEAction since becoming too disabled to work full-time. Among other projects the agency is building relationships with long-hauler communities right now – finding ways we can support each other, break down societal stigma, and push for better, more widespread medical education as well treatments for these complex, multi-system conditions. I appreciate that you have shined a spotlight on bias against those with hidden disabilities. While it has been utterly relevant to us for a while, this is a moment of opportunity for the rest of the world to see the pervasiveness and unique challenges of that experience.
Are long haulers contageous?
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