My Musings on Being Heumann

Wall of Book Shelves

The ADA and Disability Activism

Today in the disability community, we recognize the signing of the Americans with Disabilities Act (ADA). In honor of this landmark civil rights legislation, I read an audiobook “Being Heumann: An Unrepented Memoir of a Disability Rights Activist” by Judie Heumann. She is a disability advocate and her actions played a vital role in the passing of this law. You might have heard of her more recently as she was featured in the 2021 Oscar nominated documentary Crip Camp that aired on Netflix. However, Judie is known much more than her role in a film. Penguin Random House summarized her story best, “One of the most influential disability rights activists in US history tells her personal story of fighting for the right to receive an education, have a job and just be human. A story of fighting to belong in a world that wasn’t built for all of us and of one woman’s activism—from the streets of Brooklyn and San Francisco to inside the halls of Washington—Being Heumann recounts Judy Heumann’s lifelong battle to achieve respect, acceptance and inclusion in society.”

Being Heumann Overview

Judie starts her story at infancy where she describes being paralyzed from polio at eighteen months and how her struggles for equality began early. She was labeled as a “fire hazard “because of her wheelchair as she fought to attend grade school. Her battles with the school system continued when she won a lawsuit against the New York City school system for denying her a teacher’s license because of her paralysis, where her actions set an example that ultimately improved rights for disabled people.

She continued to be a role model of activism and self-determination when she rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a prominent leader of the Section 504 Sit-In. It was the longest takeover of a governmental building in US history. Judie and a community of over 150 disabled activists and allies were able to successfully pressure the Carter administration to implement protections for disabled people’s rights, igniting a national movement and leading to the creation of the ADA.

Different Backgrounds but Many parallels

I left encouraged after reading this book about Judie’s life. Although I didn’t become disabled as a child, am not Jewish or from the north and our disabilities are different, I did see parallels. I have worked several years at an independent living center. I have dealt with the struggles for inclusion and acceptance. I have felt shame or confusion when someone calls out my disability or ask intrusive questions. I have had struggles with accessing the basic things I need to live and work.

Fine Line of inclusion and Exclusion

I understood her point about walking that fine line of inclusion and exclusion. Judie shared an example of this when at church her mother didn’t want the pastor to carry her up the stairs to participate in the activities with the other children. Her mother thought it was too much and it would be a burden even though the pastor was okay with it. I could relate with this situation so strongly. It is part of the stress of my disabled life and not wanting to be a burden. It is about picking and choosing your battles. It is about not wanting to wear out your welcome. If I ask to many times, people will get tired and annoyed so I pull back and either don’t ask much or don’t ask at all, neglecting my needs in the process. It is also being in that vulnerable and precarious position of depending on people to be nice. If a person is nice about it then I feel okay to ask and move forward; if I sense some resistance then I pull back and don’t ask.

Focus on the Barrier Not the Disabled

A woman in a wheelchair along side another woman working with her on a computer
https://www.pexels.com/photo/woman-in-red-sweater-wearing-black-framed-eyeglasses-sitting-on-wheelchair-4063789/

One of the things I have learned about being a disability advocate and Judie also brings up in her book is the mindset we must have for the world to change. When she was pushing for Section 504 she and other activists had to help people understand it is not because you can’t walk that you can’t get into the building rather the building is not accessible. Changing the mindset and putting it on the barrier and not on the disabled person is the way of creating the change. For example, I wrote in a post about applying for jobs online and inaccessible sites. The answer is not for me to regain my sight or get a sighted person to help but to fix or create accessible websites that work with my screen reader.

Feelings of Being Ignored

Judie said when people ignore you, it is an intentional display of power. They act like you don’t exist and do it because they can. They believe that nothing will happen to them Ignoring people silences them. It avoids resolution or compromise. It opens feelings of unworthiness because it makes you feel that you deserve this treatment in the first place. In the end you are forced to choose whether to make a fuss or accept the silent treatment. If you stand up for yourself then you are viewed as aggressive because you break the norms of being nice and polite, which can make you feel worse.

OMG! When Judie said this, I was thunderstruck! What she said was so true and powerful. So many times, I have felt a loss of power as a Black disabled woman when I have been ignored by someone who didn’t want to deal with me. There would be times when I just didn’t have the energy or the resources to fight back. There have been times when I would regroup and try another approach but in the end being ignored really sucked! I would have to figure out other ways to reclaim my power and self-confidence.

It’s About Human Rights

Judie notes that people need to understand that Section 504 and the ADA was about civil and human rights for the disabled. Many people understand the fight for racial equality, or gender equality but when it comes to disability people don’t connect the dots. Many times, I have had to say substitute one of the other minority groups and replace with the word disability.  Then people began to understand the struggle for equality. Judie said the basic logic in society is that people with disabilities won’t benefit as much from X, or Y or Z as much as people without disabilities. Therefore, X or Y or Z is not essential. They should accept the idea of going without. The same goes for transportation and employment. But what kind of logic is that really? The underlined assumption is that people with disabilities have less potential to learn and contribute. That we are less capable and not equal.  Judie says the problem with this logic is that disability is part of the human condition. As we live longer more people will become disabled. What we should do is accept it, plan for it and build our society around it. Disability is coming whether we want it to or not. I totally agree and tell my temporary abled body friends this all the time.

I will end this blog on this profound point Judie made. We underappreciate our human rights in America. You won’t realize their importance until they are gone. These are such powerful words. Therefore, we must be constantly vigilant because our rights are precious. We can lose them. They can be taken away at any time.

2 thoughts on “My Musings on Being Heumann

    1. Yes, I personally vote at the actual polls with the accessible voting machines because other methods are not accessible. It is something I have advocated for since I went blind.

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