Disability is not a tragedy: A Review of the Being Heumann Memoir

 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.

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[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 17^th, 2024.

[3] https://www.merkley.senate.gov/merkley-gaza-needs-a-massive-increase-in-humanitarian-aid-immediately-opinion/. Accessed September 17^th, 2024.

[4] https://www.bbc.com/news/articles/cz9drj14e0lo. Accessed September 17^th, 2024.

War’s Quagmires and Structures: A Review of Bridge on The River Kwai (1957)

Bridge on the River Kwai is praised for good reason with great cinematography and a deeply moving drama at the core. Certainly is kin to Lawrence of Arabia, also by David Lean. A really rich irony to so much of the film being about building the bridge, moving it down the river downstream to a better location and building anew, and then blowing up the bridge. This reminds me of the futility of war -- that rules will break down, and communication will break down, but people will reason that the rules must be followed to the end.  In this case, the rules are the Geneva Conventions, which prohibit putting prisoners to manual labor – such an insistence, however, does not save them. Even the shared rules governing the British army do not prevent the tragic conflict that emerges within their ranks thanks to their leadership. In this sense, the film steps away from being British vs Japanese and becoming a story of the nature of war. The fall of the Bridge over Kwai therefore is a symbol not of mutual understanding but of the discord of trying to survive this prison camp.

The cast is peppered with interestingly diverse characters. I especially liked Clipton, the medical officer, a small player in this massive situation. He is recurring, amusing, and thoughtful like a sort of tertiary main character. Colonels Nicholson and Saito – the main military leaders for the British and Japanese respectively– get caught up in their support of "the rules", even if they argue it from different standpoints. By contrast, Commander Shears, the American, has spent time in Saito’s prisoner camp and has adopted a more pragmatic lust for life in opposition to the “rules”.  Because these characters are so distinct, despite their high number, you get a feeling for each of them individually, including often insightful and even hilarious dialogue.

However, the film does still rely on a British point of view -- even the British colonization and administration of India seems to be implicitly favored -- and does not seem to give us much insight into the Thai or the Sri Lankan perspectives of the wars they're forced into. The setting is essentially split between Ceylon (the colonial name for Sri Lanka) and Siam (the colonial name for Thailand). Sri Lankan people scarcely appear in this entire film, writing them off into oblivion. By contrast, Thai people do appear, and even speak in Thai, including figures like guide Yai and equipment-carrying women. For characters that spend significant amounts of time on screen, they aren't given much insight or time – even though at least a couple characters know or pick up Thai and a couple pick up English. Feels like an unfair shorthand – focusing just on the British and allies vs the Japanese – when could get to see the war from a third perspective. Furthermore, the soundtrack sometimes comes across as a little eager, which occasionally cements a colonial vibe.

 

Despite this description, Bridge on the River Kwai is a great film that is worthy of both viewing and study. Excellent sense of scope counteracts these challenges of story framing. With sweeping shots of the jungle, or far off distances of soldiers marching, Lean's direction captures the cast as small compared to their gaping surroundings. One such instance depicts bats flying overhead, disrupted by gunfire, dwarfing the scale of human action. By closing with a zoom out shot, Lean's film demonstrates that we humans are tiny, through Clipton's conflicted perspective, a simple dot against the machines of war. “Madness,” to pull from the medical officer’s closing words, is this whole affair.