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Three things before we get started today….

First, a quick heads up, this episode is going to be a longer than usual. I typically target around 10 minutes for our core weekly episodes, this one may get close to 30 minutes…

Second, we’ve added a video version of the podcast on YouTube. Our YouTube channel is called Disability Democracy, check it out. We mainly did this so we could add captioning to our episodes for anyone in our audience who is hearing impaired. We do also have a transcript or script for every episode at disabilitydemocracy.org. If there is anything we can do to make this podcast or our website more accessible to you or others, send me a note – steve@notwithoutus.org.

Finally, I’ve had some feedback that some folks don’t love our sound design, so I’ll be changing it around a bit. Let me know what you think about it… or anything else at: steve@notwithoutus.org

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I hurried to finish Judith Heumann’s memior “Being Heuman” in time for the 30^th Anniversary of the signing of the Americans with Disabilities Act on July 26^th 2020. She subtitled her memior “An Unrepentant Memoir of a Disabilities Rights Activist”. She had to. While we all know the names of the leading civil rights activists including the late John Lewis, BUT, unless you follow disability rights, you wouldn’t know who Judy Heumann is, though her story and her role in the history of disabliity rights is similar to his.

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See Episode details.

I’m your host, Steven Davis and welcome to the forth episode of Disability Democracy Radio. This weekly podcast is about practical actions we can take – that YOU can take – to make a difference in your community. The goal of Disability Democracy Radio is to accelerate the disability community revolution. Find out more at disabilitydemocracy.org.

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I am not a great reviewer for Judy Heuman’s book “Being Heumann”. I came to it with an agenda – I have been trying to understand “What the Frel Happened to Disability Rights” – how did we get where we are, what happened, and, perhaps more importantly, want didn’t happen.. and the book both did and didn’t answer my question.

I first stumbled upon Judith Heumann in one of my many web searches on some random disability rights topic. It was a TED talk Judy gave about her life as an activist. She told a compelling story and she tells it well. Judy Heumann’s life experience has followed the disability rights movement here in the US (and it is worth reviewing as too many of us don’t know disability history at all). Here are some highlights (but you should still check out her video or read her book):

* Judy had polio as a baby during one of the last major outbreaks in the late 1940s and has used a wheelchair since.

* Her parents chose not to institutionalize her (institutionalization was a “standard option” for families who had kids with disabilities until depressingly recently).

* Her mother had to fight for her to go to school (most schools were not accessible and only a fraction of kids with disabilities were allowed in school at all) and then Judy and her mom had to fight again to actually be educated.

* Judy went to college, wanted to be a teacher, but had to hide that fact since the system thought she couldn’t get a job as a teacher …

* And the Rehab people were partially right as she had to fight the State of New York to get her teachers license. Getting a job become another problem.

* Based on her early activism, she was invited to Berkeley, California, the hub of the emerging disability rights movement.

* She was a leading figure in the protests in San Francisco to get the regulations that implemented Section 504 of the Rehabilitation Act in 1973 – the first major piece of disability rights legislation passed in the US in the . These protests were probably the first time disability rights hit the national headlines.

* She later became the Assistant Secretary of Education for Special Education and Rehabilitative Services during the Clinton Administration.

* And She was the Special Adviser on International Disability Rights during the Obama administration.

… and throughout Judy had leading roles in an alphabet soup of disability rights organizations.

Quite a life. Quite a story. I loved her TED talk. But, not it was a great book.

Just a reminder that full episode transcripts and additional resources are available at disabilitydemocracy.org. We welcome your comments, feedback, and suggestions. Let us know how we can make Disability Democracy Radio more accessible and actionable for you.

(bus sound)

I read a lot, but I am not a huge fan of memoirs. Most of them seem to written be by people who haven’t done much of interest to anyone except them and their therapist.

That is not the case with “Being Heumann”. Judy Heumann has done significant things and led an interesting life.

So, what went wrong?

The problem is, the book is in a fight with itself. On one hand, it is a partial capsule history of the US disability rights movement, from the stealth incorporation of Section 504 into the Civil Rights Act, through the battle to get it implemented, and ultimately the signing of the Americans with Disability Act. It is a story that is very interesting and not nearly as known as it should be… and it is great to have the perspective of someone on the front lines for much of it.

On the other hand, it is the personal memoir of a woman who has had an amazing career and lived with a major physical disability.

And, perhaps, the biggest problem is that Judy is too polite.

There are hints of fire.

Judy rarely talks about her caregivers. (which I found interesting in itself)…

…..except she spent a colorful half page on the failure of an aid she hired when she came to DC to by Assistance Secretary of Education to show up. Clearly this woman REALLY TICKED HER OFF.

… and she talks at some length about the sexism within the disability rights movement…. And really recriminating herself for not challenging the men.

What is it like to have a caregiver? Tell me more.

What was it like to work in and lead the disability rights movement? I want to know.

Too polite?

I definitely wanted to hear more.

Perhaps a glass of wine. Maybe a bottle.

Then. Abruptly. Love and Marriage. Chapter 10 of 12. Page 172 of 211.

Right. She is a person, not just an activist.

She spends some time talking about her courtship and marriage (which came fairly late in her life, something I understand). On one hand, she is obviously, very in love and happy with her husband, Jorge, but we had previously heard little about her personal life after her childhood. Her memoirs were previously rather impersonal. Little discussion of friends, relationships. Her life outside of work (at least once she was an adult). Actually little of what it was like being a disabled woman… how does that feel? Work? What is “typical”? What is different? What is it like to “Be Heumann”?

It almost felt like her publisher pushed her to add some “personal stuff” in during the edit process, so they added a chapter.

Speaking of which, the oddest hole in the book was the lack of pictures. Especially in a memoir or biography. I always look for that center section of photographs of 10 to 20 pages of photographs. Mom. Dad. School Days. Social Life. Husband. Notable events.

Nothing. Cheap publisher? A concern about privacy? I don’t know. It kind of hurt. After all her stories, I wanted to see her mom – a petite woman, like Judy, who fought hard for her to get an education. And her dad who had to carry her onto a stage so she could receive an award when she graduated from high school. Heck, Jorge, the guy she is so obviously in love with and married. Nothing professional or activist related. No pictures of her at the 504 protest in San Francisco or testifying before Congress. No pictures of her with Clinton or Obama.

Finally, we don’t really get to see much about the inside of the disability rights movement. Again, there are glimmers. The real efforts to include people of all disabilities in the planning meetings going on during the occupation of the San Francisco office of Health, Education, and Welfare. Giving people with cognitive and communication disabilities as much time as they needed to speak. Names are dropped, but little is shared about the challenges to bring people with different disabilities together or real exploration of their issues. How did they organize? Why all of the groups? Who were the key players – known and unknown? What happened to them and the movement? What worked. What didn’t.

I really want to know. More about Judy. More about the disability rights movement.

Is this unfair?

My bottom line on Judith Heumann’s book “Being Heumann”. It has real shortcomings, but absolutely read it. We have far too few windows into the US disability rights movement. We know too little about the struggle and the people who struggled and continue to struggle. If I’ve turned you off of the book, at least check out one of Judy’s TED talks. If you have other books to recommend on disability rights history – let me know so I can share them.

I do think that her story would make an awesome graphic novel.

Finally, did “Being Heumann” satisfy my own agenda? Finding out what the Frel happened to Disability Rights?

(bus sounds)

One of Judy’s early anecdotes as a girl is spending more than an hour on the “special education” bus going around the city picking up the disabled kids – even though the school was only 15 minutes from her home. This in the early 1950s.

She tells this story both in her TED talk and her book.

It hit me like a brick.

When I took my autistic son to his first week of special education in January of 2017, there was a special education bus that showed up, sometimes 15 or 20 minutes before school started. We came around 30 minutes early after dropping my daughter off at her school. We stood, outside a separate locked gate with some of the other special education parents and their kids.

While the general education children could go through the main gate and play on the playground until school started, we waited. For our kids, it was mostly OK. They found a way to play at the entrance. Kids always find a way. The parents talked.

But, not so for the kids on that special education bus. They sat. Watching. Some of them may have been on that bus for an hour (one of the special education “services” that you are pointedly offered is “transportation” – they sent my wife and I the information package for the bus in the Fall of 2017 for a 7AM pickup for an 8:30AM start for our then 4 year old son. No way. I had seen what that bus was like. There was no way I was going to do that to him. But I also know that I had the choice and luxury of taking him to school every day). This was in 2017. Decades later. After 504 was implemented. Decades after the Individuals with Disabilities Education Act. After the ADA.

We’re still on the slow bus. And too many of us are still separate.

Parents routinely still fight for real education for their kids with disabilities. Lots of us hire lawyers or advocates. When are kids turn into adults, things don’t get better. Employment rates are at 15 percent. We still have sheltered workshops. Stil have a sub-minimum wage (you did know that people with disabilities are excluded from our minimum wage laws, didn’t you? I sure didn’t when this started). Deep stigma. Housing problems. Healthcare. The list goes on and on.

Virtually all of the things that Judy talked about.. starting with her own experiences in the early 1950s and through her activist career in the 1960s.

What happened?

What hasn’t happened?

I still don’t know.

But, there are hints in Judy’s book. Section 504 was slipped into the Rehabilitation Act… but the bigger fight was in the implementing regulations. The ADA was passed quickly in the Senate, but faced numerous amendments to weaken it in the House.

Bureaucratic death by a thousand cuts..

Judy notes that she got her teacher’s license through a court case, but also notes that she was lucky. She had one of the first African American women judges in the US who had been active in the Civil Rights movement as her judge. This was and is not always the case. Even more so today with an increasingly conservative court system.

Judy notes that “cost” was never part of previous civil rights debates, but disability rights advocates are on the alert whenever the rhetoric of “burdensome regulations” arises. If you are disabled, “Burdensome regulations” often means you.

Few people come out and say they are against disability rights, instead the devil comes out in the details. The regulations. The budgets. The schedules. The waivers. America’s churches managed to exempt themselves from the ADA. Yep, our churches made damn sure they didn’t have to make their “houses of god” accessible to those with disabilities.

Healthcare rationing sounds sensible unless your very life is being rationally rationed away..there is so much deep seated stigma. There is so much cynical mouthings about “inclusion” and so little action.

The cultural, political and community piece of disability rights haven’t jelled yet for some reason.

Maybe because the fight wasn’t hard enough or long enough to pull the community together. It took more than a century for women and African Americans to get their rights… and their struggle continues.

Maybe the stakes weren’t extreme enough. The AIDS crisis brought the LGBT community together.

We don’t yet have a real mass movement for disability rights, we have thousands… tens of thousands…. Millions of individual battles separate from each other. Fighting alone or huddled in small groups.

Was it our own divisions? Our own discriminatory hierarchy of disability?

I don’t know.

All I know is we need to find the answer.

(clock ticking)

This episode of Disability Democracy Radio was sponsored by Not Without Us. Not Without Us is a 501c4 mutual benefit corporation. Our goal is equality for all disabled adults and kids with disabilities. You can learn more about our work at notwithoutus.org. Our strategy is built on democratic action – whether it is providing support for disability organizations and allies through our directory at disabilitydemocracy.org, training aspiring local candidates for office, endorsing candidates, or directly working on issues.

We’d like to thank Diane Papn and Steven Yoda for their contributions to Not Without Us. You can support Not Without Us with an annual, monthly or one-time donation at notwithoutus.org/join. If you have any questions or comments on this episode, visit disabilitydeomcracy.org – you can email us, leave a comment, or even a voice message. I’m Steven Davis and on behalf of Not Without Us, we think that democracy comes not from a vote every two years, but from the actions we can take every day.

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