Content warnings: discussions of ableism, violence, the Holocaust, and the Israel-Palestine conflict follow below.
A Disability Advocate
Disability is seen as a cause of despair, as a life
merely of limits. The great advocate Judy Heumann, in the 2020 memoir Being
Heumann: An Unrepentant Memoir of a Disability Rights Activist, powerfully
dispels this perception. Her activist trajectory ranges from unwitting
beginnings as a child stricken with polio to international stature as a senior
official in the U.S. government. At first, I lacked familiarity with the trail
she blazed. Now I know. From Judy Heumann’s influence, we have the power to
build a more inclusive, loving world.
Many lines stand out in Judy’s incisive descriptions of disability. Three examples of disability as a “bad thing” in popular art are laid out in the book, highlighting the ubiquity of this experience. Being a sci-fi fan, I am drawn to a particular character.
“A man acquires a disability and
turns villainous in the face of the agony.
Star Wars’ Darth Vader.
Disability is seen as a burden, a tragedy.
But
what if it wasn’t?
What if someone’s story began with the words: ‘I never wished I didn’t have a disability’” (Heumann 201).
Herein there are two fundamental
poles of disability – tragedy and joy. Darth Vader – a paraplegic man sustained
by a high-tech suit – is described as the death of his previous identity,
emphasizing the tragedy pole. However, what if the story prioritized disability
joy? Briefly, in Return of the Jedi, he acts of his own will to end
suffering for his son, showcasing a sliver of joy. What if Darth Vader had
gotten to simply live after ‘waking’?
Judy wielded her perspective as a chisel upon the statue of the world, a world
of barriers. A seasoned bureaucrat working in the Clinton administration
(during the 1990s). The first World Bank Adviser on Disability and Development.
Most famously, the newly created Special Adviser on International Disability in
the U.S. Department of State. There, she guided U.S. efforts to ratify the instrumental
United Nations Convention on the Rights for People With Disabilities, joining
many countries. In the course of duties, for example, she raised accessibility
concerns about the Amman, Jordan city hall. Judy exclaims, “Two weeks later the
city hall in Amman had a wheelchair ramp, designed in the architectural style
of the building” (194). As part of her legacy, the American-led disability
rights movement expanded worldwide.
Such an instrumental person deserves our attention and admiration for surpassing infinite obstacles. Below, I share her accomplishments.
As a childhood survivor of polio,
Judy began using a wheelchair in the 1950s, long before disability was
recognized as a matter of civil rights. The seed of activism was planted in
Judy by her parents. Ilse and Warner Heumann were both orphaned by the
Holocaust and sent to live in the U.S. as teenagers, incubating a strong sense
of justice in them. Just down the page, Judy explains that the Holocaust sought
to kill people with disabilities for being a threat to genetic purity. The
stage is set for her fight with resistant institutions.
She was blocked in ways that are hard to imagine for those of us born in the
U.S. after 1990. “Judy is a fire hazard” (8), said the principal of a public
school about her wheelchair. Even after studying Hebrew, she was denied a spot
at the local yeshiva or Jewish day school. Home instruction was
(seemingly begrudgingly) permitted until one day she was accepted into a special
school for students with disabilities in a basement. An inch closer to
education integration.
Enduring this gauntlet set the stage for Judy to enter ‘real’ high school, move
onto university, and focus on her mission of teaching others. At the time,
teaching was not considered a profession for anyone with a disability. Though
the barriers did not desist, she did resist.
For the heinous crime of….wanting
to teach from a wheelchair…she was declared insubordinate by the New York City Board
of Education. This denial of teaching license catalyzed her explosive growth as
an advocate. The American Civil Liberties Union – a group that very well should
have offered full-throated support – refused to take the case so she “called [a
disabled guy she knew at the New York Times] and told him about the Board of
Education’s decision” (55), kicking up a storm of public scrutiny. In a public
court case, she proved the board decisively wrong and started teaching students
with and without disabilities, demonstrating her determination.
The book’s closing chapter asserts the 504 sit-in as her activism’s
cornerstone. Note that “504” is a special number that describes educational plans
for students with disabilities. I was on one. Section 504 is a small portion of
the Rehabilitation Act, but it prompted the longest takeover of a government
building in U.S. history. Why? Put simply, 504 establishes the legal
possibility of discrimination against disability – massive and unprecedented.
A hard struggle passed before the
law took effect, followed by greater bitter pushback. Judy played an
instrumental role in the building takeover, drafting the 504 legislation, and
fighting for its implementation. In short, without her, this progress may have
perished in the brainstorming phase. To learn more about this event, read the
memoir. From the 504 rises the all-important “ADA”. It’s so critical that I
consider myself a “Post-ADA” person.
If the acronym means nothing to you, you can hardly be blamed. Despite its
importance, the ADA is treated as a mere fact of life now. The Americans with
Disabilities Act was signed in 1990 by George H.W. Bush who proclaimed “’Let
the shameful wall of exclusion finally come tumbling down’” (171), reflecting a
new mentality. Judy describes the ADA as “the strongest, most comprehensive
civil rights legislation for disability in the world” (171). This act finally
brought the promise of being an equal citizen in the U.S. and maybe elsewhere.
How did such a law come to be? Motivated by 504, people with disabilities
agitated for their due justice and civil rights, leading to the ADA. Activists
decisively crawled the eighty-three marble steps to the U.S. Capitol, which
elevated the struggle’s stature. Judy presents, “Pushing themselves out of
their wheelchairs, dropping their crutches to the side, leaving any other
mobility assistance behind, they began to climb the steps” (170). Truly, the
ADA is where disability rights became a full movement with Judy as more of a
careful caretaker. A critic could argue that the ADA only has merit within the
U.S. and for a limited group. However, as one example of its worldwide reach,
Judy promoted the U.N. convention, itself largely based on the ADA[1], and
encouraged accessible renovations to U.S. embassies and foreign government buildings
like the Amman city hall.
The Work Done and To Be Done
Being Heumann, which came out in 2020, pushes us
to look forward. For instance, Judy writes, “Because we already have the
vehicle to make our society fair, to give everyone a voice, to protect and
advance the rights of those who are marginalized, and create the shared
institutions that support us all. It’s our democracy” (208). These words
demonstrate how advocacy can bring out a better world – through directed
action.
For example, under the shadows of a brutal pandemic, activists have pushed for and received some tremendous changes over the last four years. Telehealth became much more widely accessible than before, alleviating risk of infection and physical access concerns. The reauthorization of the Federal Aviation Agency in 2024 carves out improved guardrails for air travelers with disabilities, which has taken a full fifty years. Promising experimental medicines, including novel gene therapies, are receiving record approvals by regulatory bodies across the world for those who wish to take them. Finally, people with disabilities have made themselves better known since the book came out.
Unsurprisingly, despite a plethora
of great news, access and accommodations remain deeply challenging globally. The ADA, Section 504, and the U.N. Convention moved
the needle on disability rights but did not resolve all deep-seated tensions. Much
work remains for integrating people with disabilities with employment and
broader life opportunities. My experiences assure infinite examples. Perhaps
you even see this in your own lives.
Instead of wallowing in despair, I want to offer ideas for how you can get
involved. These are suggestions about how to relate to barriers many people
with disabilities face.
1. Keep an eye out for what may not be accessible. What physical impediments
stop people with mobility limitations? When do public resources exclude deaf
people by not providing a visual supplementation to verbal information? How about when instructions are difficult to
understand for neurodivergent people? In general, when are people excluded for
not matching societal norms of ability? Just a few questions to consider barriers
in society.
2. Fight for healthcare that
expansively covers the needs of people with disabilities many of whom need
access to specialist doctors (cardiologists, neurologists, physical therapists,
and endocrinologists to name a few). In the U.S., universal healthcare is
desperately needed; however, other countries, like Canada, have universal
coverage that may still not cover the needs of people with disabilities. Though
universal healthcare provides greater access to necessary medical care, this is
not itself sufficient. No matter the country, there is need for healthcare
systems to support these populations, instead of rationing their care.
3. Imagine disability justice as a full solidarity movement. Ability coincides
with race, gender, sexuality, class, religion, and even geopolitical identity.
Often, disability is cordoned off in a special category away from other
identities and treated as “solved” by the ADA, requiring no more action. In
fact, Judy’s memoir highlights how numerous groups – like the Black Panthers,
LGBT+ organizations, and more – collaborate with disability rights activists.
These groups may not even be entirely separate to begin with.
Just three instances of this overlap are presented below: 1) My lifestory; 2)
disability and reproductive freedom; and 3) the War on Gaza.
I live in the interfaces of
identities myself. As a Pakistani-American with muscular dystrophy, I stare
down my own journey across disability. Some aspects are implicit, some are not.
My class-privileged background also eases my ability to receive necessary care.
My cultural associations of community support drive my different approach to
disability rights. My view of a person with disability varies based on my
snapshot of lived experiences.
Conceptually, disability is often separated from reproductive freedom. Despite how
people with disabilities (of all genders) give birth, receive abortions, and
seek other forms of reproductive medicine. At an ACLU of Oregon lobby day, I
forged this connection and championed reproductive freedoms with state
legislators as a disability rights advocate. There’s a few reasons why they are
related. Much of reproductive healthcare – involving birth, abortion, egg
freezing, and more – relies on medicine that is multi-purpose and used to treat
a host of conditions. Furthermore, this process underpins healthcare at large –
with attacks on abortion and other care hurting the process of receiving health
in general. Lastly, perhaps most
crucially, if facilities cannot be accessed by people with disabilities, they
are blocked from their rightful resources.
Ability intersects with geopolitical concerns – even though disability rarely
receives explicit notice. No place more dramatically reflects this reality than
the recent War on Gaza. Rashid Khalidi’s insightful, incisive 2020 book – The
Hundred Years’ War on Palestine – implies pervasive ableism through decades
of attempted annihilation. Intense bombardment destroys buildings, sidewalks,
roads, medical facilities, universities, and lives. Travel by rubble blocks
many Palestinians with mobility limitations, many of whom were rendered this
way by violence. Crutches, wheelchairs, oxygen tanks, anesthesia, various other
medical supplies, and even food are generally banned from entering Gaza[2] –
compounding these brutal obstacles.[3] An
example of targeted ableism appeared earlier this year when a man with Down
Syndrome named Muhammed Bhar, posing no threat to soldiers, was mercilessly
killed.[4] In
his final moments, he apparently spoke his first words to gently ask his
attacker to stop, showing full humanity.
Looking Ahead
Being Heumann, the memoir Judy Heumann was hesitant to write,
reflects her great legacy in shepherding progress towards a brighter future.
Despite being known as an instrumental player in essential disability
legislation, she devotes few pages to it, instead focusing on her many
collaborators. Judy Heumann’s great legacy as an activist comes from her
ability to surgically target issues facing people with disabilities and to
rally others around solving these problems. This expose further reveals the
grand solidarity of the disability justice movement, encompassing all forms of
life.
A plethora of experiences requires
a plethora of discussions. We all learn and grow from others. As an activist
myself, I found myself humbled by reading this book. In fact, at a town hall a
few months ago, my state senator brought up this book in response to my
question about how the state legislature is removing barriers for people with
disabilities. Learning about this memoir was collaborative for me. Disability
activism – and advocacy at large – require us to be fully open to the many
contributors around us. My own tributes to disability advocacy pale in
comparison to Judy’s; through this revelation, I seek to redouble my own
efforts.
As a community, we can look for
ways to create a more inclusive world for people in general in line with
disability justice’s broad coalition. To achieve this, the world must reduce
barriers that limit many people with disabilities. We must start small with
what is around us and build up to changing society itself.
Books Consulted:
Heumann, Judith with Kristen Joiner. Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Beacon Press, 2020.
Khalidi, Rashid I. The Hundred Years’ War on Palestine: A History of Settler Colonial Conquest and Resistance, 1917-2017. Metropolitan Books, 2020.
[1] The Convention was completed in 2006 under President George W. Bush. However, the president decided to pass on signing the U.N. convention because of the ADA. Instead, President Barack Obama, under whom Judy worked, signed the convention in 2009.
[2] https://apnews.com/article/israel-gaza-rafah-aid-us-senators-2bc2a3c5e5f8af8e2d3f0b7242c1a885. Accessed September 17th, 2024.
[3] https://www.merkley.senate.gov/merkley-gaza-needs-a-massive-increase-in-humanitarian-aid-immediately-opinion/. Accessed September 17th, 2024.
[4] https://www.bbc.com/news/articles/cz9drj14e0lo. Accessed September 17th, 2024.
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