The Long Haul of Disability Advocacy

By Logan Heiman, Digital Collections Manager

The United Nations has observed December 3 as International Day of Persons with Disabilities since 1992. The 30th annual observance of this day comes at a time when disability has gained renewed salience in the midst of the COVID-19 pandemic. A subset of the approximately 50 million Americans infected with COVID-19 experience what some call “long COVID,” which the United States Department of Health and Human Services defines as having the following symptoms, among others: 

  • Tiredness or fatigue 
  • Shortness of breath or difficulty breathing 
  • Headache 
  • Difficulty thinking or concentrating (sometimes known as “brain fog”) 
  • Chest pain 

In guidance issued in the summer of 2021, the U.S. Department of Health and Human Services Office of Civil Rights defined long COVID as a disability under the Americans with Disabilities Act, the Rehabilitation Act of 1973 (Section 504), and the Patient Protection and Affordable Care Act (Section 1557). Though firm numbers have yet to be produced, medical specialists believe that between 750,000 and 1.3 million Americans languish under the debilitating effects of long COVID such that they are unable to return to the workforce full-time. This phenomenon has prompted disability activists like Fiona Lowenstein, Hannah Davis, and Imani Barbarin to describe the COVID-19 pandemic as “one of the largest mass disabling events in modern history.”  

The emergence of long COVID as a significant and potentially long-enduring affliction for millions around the world has further fueled questions about comprehensive tracking of long COVID cases;, the capacity of hospitals, disability benefits administrations, and workplaces to meet the needs of long COVID patients; and how to successfully move into a post-pandemic phase. Long COVID has also spurred on the efforts of disability activists to bring attention to the obstacles long COVID patients will face going forward as they seek to participate in the workforce, receive accommodations in educational institutions, and secure proper care within medical systems that sometimes write off the symptoms of long COVID sufferers as “psychological.” 

COVID-19 and its potential to create a generation of people with disabilities carries echoes of the long-term impact of the polio epidemic. Like its COVID counterpart, post-polio syndrome (PPS) was not well understood and drew little interest from the medical and scientific communities for much of the late 19th and 20th centuries. After the rollout of the polio vaccine in the 1950s, polio largely disappeared from the industrialized world with the neurological effects of PPS not appearing in many polio survivors until the 1970s and 1980s. Best estimates of the number of polio survivors with PPS were thought to fall between 81,000 and 184,000 in 2006. Although the polio epidemics that raged throughout the 20th century led to summer camps for children with polio such as Camp Sea Haven on Plum Island in Massachusetts and rehabilitation centers, similar support and advocacy had not materialized for PPS patients whose symptoms were met with skepticism within the medical community.

PPS eventually did come to receive some legitimacy and attention from scientists and medical professionals culminating in the 1994 gathering of the leading polio researchers in the world organized by the National Institutes of Health (NIH) and the New York Academy of Sciences. However, recognition of the condition‘s importance may have come too late to generate an increase in new lines of research. As disability historians like Lennard J. Davis of the University of Illinois at Chicago point out, grassroots advocacy must often be joined with intensive lobbying and political will before disabled populations see the changes they need.  

For those suffering with long COVID, their advocacy early on in the COVID-19 pandemic offers signs of hope for action within medical circles to produce research and resources for post-COVID recovery and treatment. Advocacy groups like LongCOVIDSOS document their symptoms online and organize meetings with officials from the World Health Organization (WHO) in a sign that the world’s leading public health bodies are paying attention to the impact of long COVID across the globe. And in February 2021, NIH announced Congress’s allocation of $1.15 billion for a long COVID research initiative.  The impact of chronic illness and disability on potentially millions of people worldwide will be an important area of focus for the medical community, governments, and activists well beyond the COVID-19 pandemic. 
 

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About nyamhistory

The Center for the History of Medicine and Public Health, part of the Academy Library, promotes the scholarly and public understanding of the history of medicine and public health. Established in 2012, the Center aims to build bridges among an interdisciplinary community of scholars, educators, clinicians, curators, and the general public. The Center bases its work on the Library's historical collections, among the largest in this field in the United States and open to the public since 1878.

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