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. 

Postures of Childhood: A Conversation

This blog post presents a discussion between Riva Lehrer, artist and anatomist and our “Art, Anatomy, and the Body: Vesalius 500” festival guest curator, and Sander Gilman, distinguished professor of the liberal arts and sciences and professor of psychiatry at Emory University. Dr. Gilman will present “STAND UP STRAIGHT: Toward a History of the Science of Posture” at our October 18th festival. Register here.

Riva Lehrer:

Sander, when reading a scholar’s work, I often wonder whether it relates to personal experiences that set them on the path of intellectual obsession. For me, your work is so empathetic on the subject of difference it’s as if you’ve lived in the bodies of those you’ve written about. It’s fascinating to find out where that path started for you.

Riva Lehrer as a young child. Photo courtesy of Riva Lehrer.

Riva Lehrer as a young child. Photo courtesy of Riva Lehrer.

It seems that both of us were confronted with the problem of difference beginning in elementary school. Mine began right away. From kindergarten through eighth grade, it didn’t matter whether I was in math class, or English, or social studies; I knew at some point an aide would show up at the classroom door and call my name. All us kids knew this; twice an hour, someone would get pulled out of class and sent to the big open room on the third floor. There, we’d get down on one of the vinyl mats on the floor and start following orders.

These were our daily physical therapy sessions. Almost every student at Randall J. Condon School for Handicapped Children went through this same routine. Most of us had some variety of orthopedic impairment. Condon punctuated our academics with treatments for these perceived aberrations. My brothers were not disabled. They went to regular schools, where their growing bodies were exercised in gym class. This may have been wretched on its own terms but was at least somewhat communal, being arranged around games and team sports. Here, in PT, it was isolating.

Sander Gilman:

Why is gym always the horror! When you are in third grade gym is a horror in most cases any way—except for the two guys you always get chose first for ALL the teams — but when you wear high boots with VERY long laces that had to be cross tied all the way to the top and those boots had metal braces in them, even going into the locker room was a horror. Last one in (on purpose) and last one dressed. And then gym itself—jump, climb, run. But you run like a duck, the gym teacher shouted: STAND UP STRAIGHT!


A class at the Condon School. Photo courtesy of Riva Lehrer.

A class at the Condon School, with Riva Lehrer kneeling, second from left. Photo courtesy of Riva Lehrer. Click to enlarge

Well, we never played any games together. Whenever I showed up, there’d be 8 or 10 kids already in the PT suite, mired in separate islands of exercise mats, or on high tables that put them at arm’s level with the physical therapists. We half-ignored each other, though if someone let out a loud enough squawk that faux-privacy would end. As a rule, we were an obedient lot; splaying like starfishes on huge medicine balls, lifting our knees, doing wobbly push-ups, clutching squishy objects to build up our hand strength. In the 1960s, most disabled children weren’t even given basic academic instruction; Condon was unusual in its goals to give us some kind of mainstream education. But it was clear that in the battle between teaching disabled children how to read and pushing our bodies towards normalcy, the toss would always land us back on a vinyl mat.

In that room, every weakness and failure of our bodies was brought to our attention, and then set upon by the therapists. I was told I walked as if I had a broken leg, dragging it a half-step behind me.


In truth, a duck was not wrong. I waddled without my shoes and indeed with them. Standing was hard, running was difficult and the worst part of it was being always the one who was different. I could never quite stand up the way the gym teacher or others wanted me to. Now I know that all third graders KNOW that they are too different, too visible, too comical, but somehow I knew I really was odd. STAND UP STRAIGHT! Still haunts me.


Kids at Condon used to be called abnormal. Condon was a refuge of sortsat least we weren’t called the brutal names people used outside of school. The PT suite was the only place when I ever saw some of my friends out of their wheelchairs. If a kid could stand at all, the PTs made us watch ourselves walk. (it turned our most of my friends were taller than me; my assumption that I was one of the taller kids in class was an illusion). The room was divided by long metal poles that formed a narrow corridor ending in a tall mirror. I’d start at the far end, clutching the steel poles and trying to get my legs to regulate themselves as instructed. My reflection swayed and bounced as if I were on a ship in my own personal storm.

Riva Lehrer teaching at the School of the Art Institute of Chicago, circa 2008. Photo courtesy of Riva Lehrer.

Riva Lehrer teaching at the School of the Art Institute of Chicago, circa 2008. Photo courtesy of Riva Lehrer.

Until I stopped growing (ending up at 4′ 9″), and my spine was less curved, my limp was most the obvious sign of my disability. Thing was, my limp didn’t hurt. I didn’t even feel it. I only saw it in that tall mirror, where I watched myself list and sway, buffeted by those invisible shipboard winds. I seldom thought about the way I walked at all, but my doctors did, and operated. Nothing made much difference. A year after surgery, my limp always came back, tenacious as malaria.

I am not one who thinks that impairments should not be treated, or that bodies should not be given the chance to experience individual interpretations of health. But health cannot take its bearings from the polestar of normal. Bodies should be supported and encouraged according to specific, idiosyncratic parameters. What was missing from those well-meaning treatments at Condon was any pleasure in the body itself. These were the bodies we’d had at birth. According to our parents, teachers, and doctors, we’d come ashore in broken vessels.

For us, posture regulation, gait repair, and physical therapy rested on a bedrock of shame. We were not given the option of simply loving our bodies as-is, and exercising those bodies out of delight and wonder for what our bodies could do.


The thing is that that sense of being odd never leaves you as, perhaps, we never stop being third graders when we look deep into our souls. When I started my new project on the history and meaning of posture, the title seemed obvious: STAND UP STRAIGHT! We all write autobiographies, even those who avoid writing autobiographies. That is true of artists as well as scholars.


Our early lives taught us both that crooked is a posture that tilts your head and gives you a most unexpected view of the world.