Outside the “Box”: Living the ADA

“If you wanted to go anywhere you had to plan ahead, even if it was just to the drugstore. Participating in society – going to a theatre, a restaurant – everything was hit or miss.”

That’s Carol Gill, remembering life before the Americans with Disabilities Act, which turned 25 years old this month.

“You went into a store,” she recalls, “and the aisles were too narrow. And people would give you a ‘dull look’ when you’d point out the aisles were not accessible.”

Enactment of the ADA was the culmination, as Arlene Mayerson notes in her history of the law, of a long back-story of people challenging “societal barriers that excluded them from their communities” and parents of children with disabilities fighting “against the exclusion and segregation of their children.”

Carol was among “Walk of Shame” protesters who took hammers to the curb of Hollywood’s “Walk of Fame” in the late 1980s to make it more accessible.
Photo by Tom Olin
Carol Gill has spent a lifetime confronting those dull looks – and usually facing them down. Now the Director of the University of Illinois Chicago’s Center for Disability Research in the Department of Disability and Human Development, Carol was an early activist for disability rights.

She participated in protests and rallies organized by ADAPT and other groups. Demonstrations such as the “Capitol Crawl” – when more than 60 activists abandoned their wheelchairs and began dragging themselves up the 83 stone steps of the Capitol building – are among the indelible images that many associate with finally creating enough momentum to get the legislation passed.

Disability and Identity

Although in the public mind the law is primarily associated with requiring “reasonable accommodation” for disabilities, Mayerson points out that it was also historic because for the first time people with disabilities were viewed as a class: prior to that they were not even a minority group. As the sign of one wheelchair-using disability rights activist of the period put it, “I can’t even get to the back of the bus.”

It was a time of disability finding an identity. Carol was a frequent contributor to The Disability Rag, a periodical that covered, as the publication itself put it, “what it means to be a crip living at the start of the 21st century.” This was an issue that meant a lot to Carol.

Carol Gill and her husband, Larry Voss, in 2015. Both had polio very early in life and use wheelchairs
“Is it a disability if it’s invisible?” she mused in a 1994 essay. “If it’s disabling enough to affect your life, it’s also potentially visible. Your learning difference, your fatigue, your pain or depression could all be revealed under certain circumstances. You know you have a ‘real’ disability when you know society will label and marginalize you once your difference shows.”

Those topics have figured prominently in her writing on disability culture, identity, health, and ethics. “One of the biggest problems that people with disabilities have in the U.S. is that we have been invisible and ultra-visible,” she says. “People are really curious about us; but when it comes to day-to-day ordinary life we are kind of the last thought of, the ‘unanticipated people.’ ”

Advent of the ADA

The ADA was signed into law July 26, 1990, and many of the most wide-reaching provisions took effect in 1992. “I think a lot of us held the hope for the ADA that it would signal that we are here, we are a part of everyday life,” Carol says. “And there was a period of time after the passage of the ADA that this seemed to be happening.”

It was evident in small things, like going into stores. “Before, salespersons would say ‘Let me bring you some things that you might want to look at.’ ” But now, “we would go to a store without any prior notice, and staff from the store would come forward and ask if we could get around OK, or if I needed any assistance. And you had the sense that they were expecting us to be there … and that they could benefit financially from me being there, as a customer.”

“It was a really exciting moment in time, where they had respect for us,” she says, “even though it wasn’t necessarily directed at us [specifically], it was because of the law.”

“It wasn’t that rosy everywhere, there were plenty of places that did nothing, but at least we had the law that we could pull out of our back pocket and use the ADA … to create access.”

ADA and Access

Sometimes that access could still be hard to come by. Carol regularly had to use the ADA as everything from a wedge to a bludgeon.

For example, there was the time she tried to make an appointment for a routine gynecological exam.

“I was told that I would not be seen unless I could bring my own assistants to help me get on the examining table,” she wrote in an essay. “This is a huge world-renowned hospital. This is the era of the ADA. Still, I am treated as though I don’t belong with the other women who seek services in ob/gyn unless I can make my disability issues go away.”

“I can’t be just a woman who needs a pelvic exam; I must be a trailblazer. I must make many phone calls and present the many bits of legal information and persuasive arguments it will take to get me into that clinic.”

She does not feel like going through all that yet again, but “my rage (as usual) overtakes my fatigue.”

The story, which appeared in The Disability Rag in 1993, was later republished in the scholarly journal Sexuality and Disability.

“It wasn’t easy,” the story went on, “but it suddenly got a lot easier when I followed my husband’s suggestion to ask for the medical center’s ADA compliance officer.”

Carol’s husband, Larry Voss, also conducts research at UIC. Both had polio very early in life and use wheelchairs. In 2011, they described their encounters with the health system in a series of videos that were part of the Disability Rights Education & Defense Fund’s “Healthcare Stories” project. At one point, Larry recounts how a surgeon suggested that he have a hemipelvectomy – essentially destroying a quarter of his body – to remove a growth, telling him that losing a leg would not be such a great loss since he wasn’t walking anyway.

ADA and Healthcare

“Healthcare has always been a little strange,” notes Carol. “If the rest of America sees people with disabilities as not a part of day-to-day life, we’re seen even more so in healthcare. We’re seen as patients, the sick, the declining.”

And that “has resulted in some weird realities.”

For example, many of the restrooms in hospitals and clinics are not accessible. “And even if they’re accessible in the patient’s rooms, the ones in the hallways for the public may not be.”

“There is a real demarcation between ‘real life’ and ‘patient life.’ … No one expects a physician, or husband, wife, or grandparent of the patient to be using a wheel chair. And this is just physical accessibility, I’m not even addressing signage for people who are blind, or signals for people who are deaf.”

In many health care settings, “people with disabilities are not considered to be anything more than patients … so many people still don’t get the ASL interpreter when they’re in the hospital, or at a clinical visit, or cannot get their medical records in alternative formats. Or people with physical disabilities unable to get on the table for an exam. Or even something as mundane as a person who uses a wheel chair going to see their primary care physician and getting weighed – many places don’t have the capacity.”

At HDA, we hear this often when talking with people with disabilities, their care givers and health care providers. We hear frequently from pediatricians who are desperately looking to transition their young adult patients to primary care physicians but end up keeping their patients with disabilities well into their 40s because they are unable to find primary care physicians and reproductive health professionals willing to take on “medically complex” patients.

Despite the strides forward in healthcare, access to quality, appropriate primary care is actually emerging as a growing issue for people with disabilities. With the passage of the ACA and the emphasis on managed care for both the private and public payers, the HDA staff have been hearing from people with disabilities looking for primary care physicians.

Musing on the ADA at 25

As with most big pieces of legislation, after enactment private, public, and social sectors scrambled to adapt to the new law. Then, as with the civil rights acts before it, there was a backlash, and the law was challenged and “reshaped” by the courts.

Over the ensuing quarter-century, the attitude that has settled in regarding universal access and universal inclusion is that “well, that’s the ideal, but we can’t change things overnight.” The visual image most associated with the ADA is the blue & white symbol of a person in a wheel chair that appears on signage for buildings or parking lots, leaving many Americans thinking more about “otherness” or “accommodating” aspect of disability, rather than the universal access of the ADA that all Americans benefit from. Just think about how much easier it is to walk up a ramp with heavy packages, rather than having to lug things up stairs.

“We really haven’t, as a society, come to believe that people who are different make a contribution, and that altering our infrastructure creates an avenue for those contributions.” But infrastructure changes alone are not enough without a corresponding change in the public mindset.“I feel really challenged by what is still not done under the ADA,” says Carol. “Underneath it all, the attitude toward people with disabilities hasn’t changed. Still, in 2015, people with disabilities are simply not expected to be a part of everyday life.”

“People confuse the notion of full inclusion with making accommodations to help people with disabilities do things the way everyone else does, rather than recognizing that there are all different kinds of people doing things differently.”

“Federal mandates are an essential step to stop social oppression. But we can’t make that big leap forward only through threat of law – there has to be a recognition that we have something to contribute, and a celebration of our contribution.” And, if we want to be a country that thinks outside of the box, we have to embrace people who live outside of the box.