What it means to live with a disability in America

Anna Leahy

THE WASHINGTON POST – At age four, Jaipreet Virdi lost most of her hearing during a severe bout of meningitis.

For years she endured a range of fruitless treatments that ultimately led her to study the ways medicine and technology sought to cure deafness.

In her insightful book Hearing Happiness: Deafness Cures in History, Virdi probed how society perceived deafness and challenges the idea that a disability is a deficit.

Instead, she views deafness and other disabilities as differences that come with the individual’s responsibility for participation, and society often makes such participation difficult.

“In my case,” Virdi wrote, “this negotiation (of how to lead a normal life) involved a series of attempts to ‘cure’ my deafness so I could hear better, speak better, be better.”

The 30th anniversary of the Americans With Disabilities Act (ADA) – it was signed into law on July 26, 1990 – highlights the nation’s progress in protecting people with physical and mental disabilities from discrimination, and it reminds us of the steps taken to improve accessibility through environmental redesign, such as the construction of entrance ramps to buildings and the leveling of curbs on sidewalks.

But the anniversary also raises profound issues surrounding what it means to be disabled in America and what needs to be done to further improve accessibility.

Soon after the implementation of the ADA, the government moved away from defining disability as a deficit, ruling that the term “handicapped” should be replaced by “individuals with disabilities”.

But people with disabilities still grapple with a long history of being ignored, hidden and judged as deficient, even as many now claim the identity of “disabled”.

The ADA remains crucial because more than one in four Americans live with a disability, with the highest rates among older people and Native Americans, according to the Centers for Disease Control and Prevention.

In her exploration of cures for deafness, Virdi discussed her own experiences with home remedies and delves into the history of an ant egg recipe from Scotland, the use of wintergreen on the ear drums by the Blackfoot tribe and various other concoctions people have tried as treatments for low hearing.

She recounted 19th-Century surgical procedures to perforate the tympanic membrane and methods for unblocking Eustachian tubes with smoke.

Whereas clunky acoustic aids of yesteryear were advertised as accessories like eyeglasses, sleek hearing aids of today are marketed as a way to render one’s disability invisible.

Virdi also outlines the controversy surrounding cochlear implants, which are marketed to hearing parents to facilitate deaf children’s speech acquisition.

Whether tonic or implant, the goal of these cures is, at least in part, for the disabled person to fit in. It is assumed that the individual should eliminate or hide a disability.

Virdi powerfully demonstrates how cures for deafness pressure individuals to change, to “be better”. She believes that deafness – and disability in general – is “an oppression of difference rather than an impairment”.

Social norms are forced upon people with low hearing or deafness; in Virdi’s view, eliminating deafness is as much about passing as normal as it is about improving hearing. Those who fail to be cured or to pass for normal are wrongly characterised as having less value in society.

The underlying premise of the ADA, however, is that society should adapt to the needs of individuals with disabilities. Instead of making the person using a wheelchair responsible for navigating intersections, the ADA requires that state and local governments provide curb ramps.

But the ADA is a set of minimum legal requirements. In Design Justice, MIT civic media professor Sasha Costanza-Chock encourages a bolder approach that calls for the world to be redesigned based on an expansive view of people’s bodies and cognitive abilities.

Costanza-Chock comes to this stance, much like Virdi, through personal experience.

Design Justice opens with a description of an airport security screening experience in which Costanza-Chock’s body “is flagged as anomalous by the millimetre wave scanner”. Discrimination is built in, not only at airport security but in all sorts of physical and online spaces, whether disabled, or black, or any type that doesn’t fit a preconceived notion of what and who belongs where.

“The point of this story,” Costanza-Chock wrote, “is to provide a small but concrete example from my own daily lived experience of how larger systems – including norms, values, and assumptions – are encoded in and reproduced through the design” of various technologies and social interactions in day-to-day life.

While many examples in Design Justice are drawn from the technology sector or social movements, Costanza-Chock argued that because we all navigate and manipulate our surroundings, we might all be considered designers.

Based on our physical and cognitive abilities and on our gender, race, class and education, each of us has different interactions with our environment at home, the workplace and other physical and virtual locations.

Because decisions about spaces, technologies and practices prioritise some goals and needs over others, Costanza-Chock advocates methods that focus on “the fair distribution of design’s benefits and burdens” as they affect all individuals. “Design justice as a framework,” Costanza-Chock wrote, can be used “as a prism through which we generate a far wider rainbow of possible choices, each better tailored to reflect the needs of a specific group of people”.

This approach can lead to greater access and more ways for individuals to be and belong.

Costanza-Chock and many other disability activists have adopted the concept of “Nothing About Us Without Us”.

Numerous cures for deafness that Virdi described, for instance, were designed by hearing individuals, without input from those who used the devices or lived with the procedures.

Such cures were mostly failures, and they made those who sought them out feel like failures too. ‘Nothing About Us Without Us’ demands that disabled people be involved in the process of redesigning physical and virtual spaces.

Disability Visibility, edited by activist Alice Wong, shared perspectives that are too often missing from such decision-making about accessibility. “These stories do not seek to explain the meaning of disability or to inspire or elicit empathy,” Wong wrote.

“Rather, they show disabled people simply being in our own words, by our own accounts.”

The first-person stories show many ways of belonging – and not belonging – in one’s surroundings. Each piece explores, on its own terms, definitions of “normal” and of “quality of life”.

Thirty years after the ADA, these accounts emphasise that accessibility is a question of shared, equitable distribution of benefits and burdens.

In a piece titled Disability Solidarity, the Harriet Tubman Collective points out that people killed in police custody are not only disproportionately black but also disabled or deaf.

In addition, a majority of inmates have mental health conditions, which often go untreated during incarceration.

In another piece, The Isolation of Being Deaf in Prison, Jeremy Woody discusses the hardship he faced while incarcerated because he was not afforded anyone who could do American Sign Language interpretation.

“None of the staff knew sign language, not the doctors or the nurses, the mental health department, the administration, the chaplain, the mailroom. Nobody,” he said.

“When I was assaulted, I couldn’t use the phone to report what happened. And when they finally sent an interviewer, there was no interpreter.”

In a piece called How to Make a Paper Crane From Rage, Elsa Sjunneson wrote, “I live in a world where I am expected to keep up or sit down.”

Those words echo the dilemma Virdi lays out in Hearing Happiness: A disabled person is often expected to eliminate or hide a defining characteristic or, if that’s not possible, sit out some of life’s experiences.

Sjunneson contended, “A disabled person has a right to be angry, not just at the specific blockade in their way but at a society that creates those blockades.”

Books like Hearing Happiness, Design Justice and Disability Visibility offer insight into the history of disability and ideas for building on the ADA’s foundation of basic protections to create a just world.