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Reflections on Disability Histories

Next Avenue asked a disability advocate to parse out the histories of disability in America and their relationship to aging

By Diane R. Wiener

Editor’s note: In the discussion that follows, author Diane R. Wiener will use primarily “identity-first” rather than “person-first” language, as well as Capital-D Disability, therefore referring to Disabled people rather than people with disabilities. Wiener acknowledges that different people have myriad preferences and adopt various conventions. For a host of reasons, these are their preferred conventions.

What does it mean to dive deeply into the histories of Disability in the United States? Why are Disabled people's powerful, yet necessary voices in the shaping and influencing of the world often whitewashed or absent from the pages of history? 

A group of disability rights activists. Next Avenue, history of disability rights movement
Disability rights activists in 1990  |  Credit: via PBS Independent Lens

Even in the present day, we see Disabled voices erased — how can this be as we talk about and question our commitments to equity and diversity?

The fact is, when Disability is included as an aspect of teaching and learning, the stories about Disability — of people living with disabilities, both historically and in the present — tend to be those featuring white men.

However, as we know, there are many historical points-of-view and, therefore, many (untold) stories.

Many Americans are likely to have at least a passing if not a great deal of familiarity with luminaries like Helen Keller and President Franklin Delano Roosevelt.

Yet, Disabled people who have been engaged with long-term Disability activism and advancing the civil rights of Disabled people, continue to remain largely unfamiliar to those in the mainstream who are archiving, recollecting and narrating histories.

While Harriet Tubman is widely admired as an abolitionist, many do not share an awareness of, nor discuss Tubman's experiences of disablement. Although Ed Roberts is broadly regarded as the "father" of the Independent Living Movement for Disabled people, far fewer know about Donald Galloway or the many other Black Disabled leaders in this movement. The same goes for countless other people of color who have engaged in long-term, local, regional, national and global Disability activist work, thereby creating and contributing vastly to Disability histories.

"Inspiration porn" and other aspects of ableism remain ever-present in media, the workplace and in social spheres altogether.

In fact, the role of Black Americans and many other people of color in the advancement of accessibility deserves everyone's attention.

For example, in Ramp Your Voice!, South Carolina-based social worker, Vilissa Thompson, who started the hashtag #DisabilityTooWhite, underscores how Disabled and nondisabled Americans of color are hurt by the general absence of diverse representations, as well as the overall lack of awareness of the powerful roles that people of color have played within the Disability community.

Thompson has advocated for focusing on Disabled people of color, while encouraging white Disabled people to be accountable for their roles in shaping the ways histories get told – especially where activism is concerned. Her work aims to capture the many diverse stories of today's Disabled activists for future generations.

A group of activists during a protest march for the americans with disability act. Next Avenue, disability rights movement
The 1990 "Wheels of Justice" march that led to the "Capital Crawl"  |  Credit: via PBS

How Stories Are Told: Saying No to "Inspiration Porn"

Often enough, mainstream understandings of the history of Disability, like so many of the stories and representations of Disabled people (frequently, offered by nondisabled people), are also about triumph over adversity, "overcoming the odds" by being heroic in some "exceptional" way. The way Helen Keller's story tends to be shared is a prime example of this pattern.

Frequently, Helen's life story — and politics — are "reduced" to discussions solely or mostly about her disabilities. She is described as vastly successful "despite" her disabilities, rather than understanding how her multiple disabilities were important aspects of her life that contributed to who she was but did not define her entirely.

In contrast, the 2021 PBS American Masters episode, "Becoming Helen Keller," offers a more nuanced story than the one that often gets told.

The late Australian Disability activist, Stella Young, famously coined the term "inspiration porn" to describe the uncritical and damaging tendency toward idealizing while "othering" Disabled people.

A classic example of "inspiration porn" is the nondisabled high school football player who asks his classmate with Down syndrome to the prom because he thinks he is doing her a favor. While he may mean well, he's "moved" to "help" her because her existence as a student "inspires" him to be a better man.

How Stories Are Told: Avoiding Ableism

"Inspiration porn" and other aspects of ableism remain ever-present in media, the workplace and in social spheres altogether.

What is ableism and how does it tend to work? Unfortunately, much of the world was not built with a commitment to fully including, let alone welcoming, Disabled people (case in point: sidewalks without curb cuts, making it nearly impossible for wheelchair users to cross the street). The belief that living with a disability is inferior to not being disabled can lead to fear and ignorance.

In turn, fear and ignorance can contribute to other beliefs and actions, both interpersonal and on the societal scale. Ableism includes discrimination against Disabled people at work, at school and at home.

This is clearly unfair to Disabled people. And the sad reality is that such erasure likewise affects everyone, because we are telling incomplete stories about our own histories.

Aging as a Social Justice Movement

The political movements to demand the equal rights of women, people of color, LGBTQ+ people and the working class, among many others, have always been interconnected (though not always without struggles) with Disability empowerment.

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Just as Disability is present within every community, demographic and population, Disability activism exists in every facet of the social world. Among the many examples have been, and continue to be, housing rights, education accessibility and workplace egalitarianism. Increasingly, we can see the intersection of Disability activism and aging.

If one lives long enough, disablement is likely to become part of one's biography, whether directly or indirectly. However, growing up Disabled and aging with disabilities can be quite different.

As any aging activist can attest, there are many ways that Disability activism interweaves and has mingled always with the rights of older adults, including in the critiquing of warehousing institutions such as nursing homes and the work toward dismantling institutionalization, to instead insist upon community living and home and community-based services.

This subject is something President Joe Biden had talked about when he proposed investing $400 billion to overhaul home and community-based services — a plan that would have positively impacted both older adults and Disabled people of many ages.

These advocacy strategies have long manifested in tandem with other approaches, including ensuring website accessibility for those who are blind, deaf, have learning disabilities, etc. and using fonts that work best for readers with dyslexia. Advocates have also pointed out why, for example, when planning events, it's important to make sure films are captioned and have descriptive audio tracks, event participants know that American Sign Language interpretation is available, and everyone is mindful of pacing, language choices and pause time in their communication.

For activists and so many others, it remains paramount to think about the relationships between Disability and aging at the same time, because of the many complexities accompanying aging with disabilities, including shortened life expectancy, chronic health problems and a lack of geriatricians.

If one lives long enough, disablement is likely to become part of one's biography, whether directly or indirectly. However, growing up Disabled and aging with disabilities can be quite different from what occurs with the acquired disabilities that accompany many people's aging process.

The Importance of Disability Activism

Far too many nondisabled, as well as some Disabled people, are largely unfamiliar with Disability histories in the U.S., especially when it comes to Disability activism.

For decades, activism has been the vehicle for change in America.

The bold civil rights activism of Disabled people made possible the "Capitol Crawl", during which activists literally crawled up the steps of Capitol Hill. That effort resulted in the signing of the Americans with Disabilities Act (ADA) into law in 1990.

Disability rights activists crawling up the steps of the U.S. capital. Next Avenue, history of disability rights movement
Disability rights activists during "The Capital Crawl" demonstration  |  Credit: via PBS

Section 504 of the Rehabilitation Act of 1973 was also made possible because of Disability-led activism. As explained by the Disability Rights Education & Defense Fund (DREDF), "Section 504 of the 1973 Rehabilitation Act was the first disability civil rights law to be enacted in the United States. It prohibits discrimination against people with disabilities in programs that receive federal financial assistance, and set the stage for enactment of the Americans with Disabilities Act."

The Black Panther Party (BPP) played a central role in making 504 a reality, including the BPP's involvement with the 504 Sit-In – led in large part by Bradley Lomax. As a Disabled BPP leader, Lomax served as a major link in the successful collaboration between the BPP and a group of Disability activists that coordinated and led the Sit-In. Lomax's role is yet another example of the importance of Black Disabled activism that is a crucial part of America's Disability histories.

Disability Histories During COVID Times and Beyond

How are Disability histories being interpreted and recorded today? Who is telling the stories of what is happening during the Covid pandemic? 

While masking mandates are being lifted across the U.S., Covid-19 continues to endanger marginalized communities.

The #NoBodyIsDisposable social justice movement has emphasized these ongoing circumstances and their often-life-threatening implications and consequences.

We saw this tragically play out across the country when nursing homes shut down, leaving vulnerable residents isolated and, in some cases, at risk for elder abuse.

It is becoming increasingly apparent that long COVID is disabling. 

Disabled older adults whose socioeconomic circumstances are less than ideal face unique challenges and can be harmed by a host of inter-related, dangerous concerns. These concerns include rising healthcare expenses, inequitable access to care and insurance, ongoing debates about whose lives are worth living (and thus preserving or saving), as well as the dangers of "long COVID," which is now affecting an estimated 10% of those who contract the virus.

It is becoming increasingly apparent that long COVID is disabling. 

Long COVID and its effects on the lives of older adults and others must be understood as falling under federal and state laws, protocols, and other regulations that are meant to protect Disabled people's rights, access to treatment and services, employment accommodations, and so on.

Especially during these challenging times, everyone can play a part in assuring that Disability experiences, stories and activist successes are always part of how we tell American histories.

And it remains vitally important for Disabled people to be involved in the sharing and archiving of our Disability histories, in order to honor, highlight and celebrate the expertise and experience of Disabled individuals and communities — including older adults.

Diane R. Wiener
Diane R. Wiener 
Diane R. Wiener, M.S.W., Ph.D., has worked in solidarity with fellow Disabled people since the 1980s. She has extensive experience in teaching, advocacy, group facilitation, advising, mentoring and consulting. Her consulting experience has included engagement with governmental, nonprofit, and educational organizations and entities, among others. Diane also has significant experience in program development and management, leadership, counseling, Disability advocacy, assessment, and supervision.
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