Disability in America

In a Q&A, history and sociology of science professor Beth Linker discusses the history of disability in America.

Judy Heumann is applauded during her swearing-in as U.S. Assistant Secretary for Special Education and Rehabilitative Service in 1993.
Judy Heumann, center, is applauded during her swearing-in as U.S. Assistant Secretary for Special Education and Rehabilitative Service by Judge Gail Bereola, left, in Berkeley, California, on June 29, 1993. At left is Berkeley Mayor Loni Hancock with sign language interpreter Joseph Quinn, and Julie Weissman, right, in attendance. Heumann, a renowned disability rights activist who helped secure legislation protecting the rights of disabled people, died on March 4, 2023. (Image: AP Photo/Susan Ragan)

It was a white building, with three stories, a gabled roof, and an awning beneath a sign reading, “Karl Nursing Home.” As a child, Beth Linker spent hours in th­­is care facility, owned first by her grandmother, Francis Eiler Karl, and later her parents. Here, Linker sang carols at Christmas. She learned how to knit. Her first career was in physical therapy.

Along the way, she became familiar with aging and its many implications. “I saw disability more as the norm than the exception, I guess,” Linker says.

Now, Linker studies the history of medicine and disability as the Samuel H. Preston Endowed Term Associate Professor in the Social Sciences in Penn’s School of Arts & Sciences. “Disability studies brings up compelling and important policy issues,” she says. “Fundamentally, it forces us to consider how society defines and determines human worth.”

In a Q&A with Penn Today, Linker discusses the history of disability in America.

When does the concept of disability first come into being?

Disability is a fairly modern concept. Of course, people have lived with disabling conditions for centuries and would be categorized as lame, crippled, blind, and so on. But in U.S. history, at least, you see the actual word ‘disability’ first coming into favor during the Civil War. In order to recruit men to fight for the Union Army, the U.S. Congress liberalized the veteran pension system and created a means-testing based on degree of disability incurred during the war.

In this context, disability was measured by the ability, or lack thereof, to labor. So, if a veteran lost an arm or lost a hand, he would receive a modest pension. If a veteran sustained a more severe disability, he would get a 100% disability rating and receive highest pension rate possible. The assumption was that he would need this money because he was no longer able to earn a living.

As I demonstrate in my first book, ‘War’s Waste,’ disability becomes part of the national conversation in the 20th century. In the days leading up to the First World War, the U.S. had spent over $5 billion on disability pensions, an amount that well exceeded the actual cost of the Civil War. Fiscal conservatives and other progressive politicians look at the number and think, We cannot keep spending all that money if we become involved in the war in Europe.

To control the cost of war and veteran pensions, legislators turn to medical professionals interested in rehabilitation, a new type of care aimed at restoring and curing the war disabled. The ultimate goal was to get disabled veterans back into the workplace and off the ‘dole.’

While rehabilitation can be and was construed as humanitarian, it also can be a method of disability erasure. The desire to ‘get rid’ of disability dovetailed with the U.S. eugenics movement and its widespread programs of sterilization and institutionalizing people eugenicists deemed to be ‘defective.’

The eugenics era fueled white supremacy and ableism. In public schools and places of work, it became legal to discriminate against anyone with a perceived disability. Many structural and societal barriers were constructed to keep disabled people marginalized. Aside from disabled veterans who were protected by entitlement programs, civilians who had disabilities were essentially third-class citizens.

Why did the 1970s become the era of disability rights?

I wouldn’t necessarily call it an ‘era of disability rights.’ Rather, it was the beginning of a very long movement that is still happening today.

Early resistance to disability marginalization and discrimination came about in many different places. The most well-known activists include people like Ed Roberts and Judy Heumann. Roberts and Heumann, both polio survivors, who throughout the 1960s and 1970s fought for independence, autonomy, and the right to access higher education.

Educational institutions could segregate until the 1970s. In 1970, the state of New York refused to give Heumann a teaching license, saying that her wheelchair use would be a fire risk. She sued and got her license. In 1973, President Richard Nixon signed the Rehabilitation Act. It’s kind of a sleeper act that makes it illegal for any institution receiving federal money to discriminate against someone with a disability.

Some of the early activism centered on independent living centers, where those who needed mobility assistance and personal aides could access it and not be institutionalized or reliant of family members.

At the same time, you start to see reports of these institutions like Pennhurst and Willowbrook, where a lot of the kids are disabled, living in terrible, really bad conditions. There’s a patients’ rights movement at the time as well, and you get the anti-institutionalization movement in psychiatry.

There are various events that come together to make it possible, but the really big legislation doesn’t come until the 1990s, when the ADA (Americans with Disabilities Act) is signed and passed.

What are some of the successes and limitations of the ADA?

A lot of that was about barriers, implementing ramps, elevators, and from what I understand there are a lot of loopholes and grandfather clauses. I think disability activists see it as a mixed bag. I think they think it doesn’t go far enough. It was celebrated as an important piece of legislation, but I think there’s a lot of frustration.

How did pregnancy and diabetes come under the umbrella of disability?

In and up to the 19th century, a person who menstruated or got pregnant would have been assumed to be disabled by those processes, especially if disability is defined as salaried work.

Although it does depend on who you’re talking about. In the violent system of slavery, menstruation and pregnancy were heavily surveilled, especially after the trans-Atlantic slave trade came to an end in the early 19th century. Slave owners and overseers forced and coerced enslaved women to become pregnant, so as to maintain the system. Enslaved women were both producers, working the fields, and reproducers, creating children who could also be enslaved. These women, pregnant or not, could not stop working.

Upper- and middle-class Victorian-era white woman were advised to rest when menstruating or pregnant. Physicians believed that these women were too delicate for work, a medical theory that supported a social structure of patriarchy. A lot of the early suffragists in the early 20th century fought against such notions of biological determinism, conducting studies in muscle physiology and respiration. They wanted to show that women were not inherently disabled by their physical makeup. In this context, white adolescent girls were told to exercise during menstruation to control pain and flow, so that they could continue to do work and go to school.

Generations of women have been taught to just power through their menses, just exercise through it. Nothing’s wrong. And I think today the newest generation, teens and young people are saying, No, menstruation can be really painful and debilitating.

When I see this kind of push back, I can’t help but to think that it’s a Catch-22. As a feminist and historian who understands the history of women’s health and oppression, I don’t know what the answer is.

Diabetes falls into that category of invisible disabilities. Disability literature talks about passing or not passing; someone wouldn’t necessarily know if someone else has diabetes. It’s a little bit more visible now with insulin pumps and continuous glucose monitors. There’s more of a sense that it doesn’t matter if people see and know.

Often, people with invisible disabilities fight against the label because historically, disability has been something that we can see and has been a category used to diminish other people, as a reason to keep them out of certain professions and tasks. It’s like the ultimate othering.

Disability scholars often point out that everybody will be disabled if they’re lucky to live long enough. This is a shared human experience. It touches everyone’s lives in one way or another.