Heumann After All

Celebrating the Mother of Disability Rights, Judith Heumann, who passed away March 4, 2023. To listen, scroll to bottom!

Hiya sportsfans? (Sportfans? Sportsfan?) I hope we’re all muddling through our respective Marches. This month is both Women’s History Month and Disability Awareness Month. I’d long planned for the second issue of this here Substack to cover the inimitable Judith Heumann, a disability- and human-rights activist who lost her ability to walk after having polio as a young’un. I was so grateful to have had a chance to speak with Judy recently in a recorded conversation for NY’s Felicity House, where our group of women on the autism spectrum talked with her about the Americans with Disabilities Act (or ADA); advocating for yourself (and when to do so versus grow, or choose different battles); and ways to advocate for others.

Then, I learned that Judy passed away yesterday at the age of 75. NPR and CBS acknowledged her passing by hailing her the “Mother of the Disability Rights Movement,” and to give you a sense of her significance, I learned of her death through a post by Barack and Michelle Obama. She was an absolute giant, and I’m doubly grateful to have had a chance to speak with her, and about her here. I’ll also release the audio and video versions of our chat (links at the end).

Before we dive into the substance, a little bit about Judy Heumann.  Among other things, she helped get the Americans with Disabilities Act (aka, ADA) passed with efforts that included staging sit-ins at government buildings. A multi-day (thus overnight!!) sit-in is no joke even for able-bodied folks, but for Heumann and fellow advocates reliant on equipment like wheelchairs, crutches, braces; or oxygen and serious medication regimens; etc…. the fortitude is dizzying and humbling. A shout-out, here, to all those swell anti-vaxxers proliferating today, who we can thank for recent returns of fully preventable diseases like polio!

Anyways, I’m only scratching the surface of what Judy Heumann accomplished in her life as a disability rights advocate. For example (and if you want to explore more #JudyContent), she’s featured in an episode of Drunk History (as subject, not participant), and a Netflix documentary about Judy Heumann’s journey and colleagues called “Crip Camp”  won an Oscar last year. As a big-cousin point of pride, she also spoke to my amazing cousin Nora (a burgeoning disability activist herself, born with cerebral palsy and a spinal cord injury), after Nora’s work helping fellow students with disabilities on her college campus. Also, happy 22nd birthday today, Nora!

The ADA (Americans with Disabilities Act)

Since its passage in the early nineties, the ADA has also become one of the broadest federal legal bases for protecting folks with disabilities, and even for protecting other marginalized groups (more in a sec). Titles I, II, and III protect against discrimination based on disability in employment contexts, by state and local governments, and in public accommodations and commercial facilities. That covers a LOT of society, and it also is pretty baffling to think that this discrimination in these spheres wasn’t prohibited before the ADA.

The ADA is thus always my legislative poster-child for why libertarianism and small-government conservativism don’t work for anyone but the privileged, well-situated, and able-bodied. (B/c the private sector etc, when free to either protect or not, didn’t choose to protect enough without the legislative mandate created by the ADA, so…?)

The ADA has actually become a big (sometimes the only) protector against gender, sexuality, and gender identity discrimination. Most recently, there’s been a debate over whether diagnosable psychological conditions like gender dysphoria are covered under the ADA.  Some of these battles to protect transgender folks under the ADA are ongoing— a couple of the federal circuit courts (the step right under SCOTUS in the legal hierarchy) have addressed it, which has been great in theory.  But as always, the best protection would come from SCOTUS itself and …. we’re in a serious progress pickle where any legal-issue-that-could-make-it-to-SCOTUS is concerned, given how the bench looks these days. I digress…

In short: many, many thanks to Judy Heumann and her fellow fighters for the ADA we know & love.
Judy Heumann’s Insights on Advocacy

My first question for Judy was a somewhat selfish one. We all have such different needs, not all our needs and difficulties are visible, and so few of our systems are designed to sustain individualized capabilities. So we have to navigate for ourselves, self-apprise, and kinda foresee our own limits/burnout.

I asked Judy how to balance seeking accommodations for yourself with being damned by your own functionality. I know when I was younger, trying to “succeed professionally,” I learned to push myself beyond my sustainable limits. Only now am I sorting through what growth was positive, and what was just forced adaptation to traditional systems. Being the powerhouse she is, Judy promised some insight about knowing when to be a “squeaky wheel” on your own behalf, even though people may perceive a certain degree of functionality and question you.   

“It’s a very interesting question,” she said, (making me feel very proud and excited), “there isn’t a linear answer.” As I go on, I’m trimming and sometimes paraphrasing, but anyone interested in the purest form will be able to access via other media!

I think when you stick your toe in the water, you’re not only trying to feel the temperature of the water but also how far in you want to go. It’s being able to develop a sense of security, not only in who I am, but in many important aspects of the work I’ve done, I work with other people. I think and talk with friends about issues that I may want to get more involved with on a personal or broader level.

Now certainly, spontaneous things happen. Once I went into a restaurant with some friends who were mostly wheelchair users, and the manager wanted us to get out—so there are a couple ways of thinking about that. Did I want to give this guy our money, since he was being rude? [But] I wasn’t about to leave, and… I wasn’t about to set a bad example of leaving because somebody didn’t want us there because we were “displeasing to look at,” whatever the thought or the law was at that time. SO I just said, “no we’re not leaving, and if you want to call the police, you can do that.”

That wasn’t a planned event: I had no idea it was going to happen, it wasn’t something that typically happened, but it was something that I needed to respond to. So that’s something where you ask, “what’s the right thing to do?”

Then, the issue of accommodations you might need or the way you individually are treated— I ran for city council when I lived in Berkeley and I ran against a woman who was the incumbent and her husband was the campaign manager—so no big surprise that I lost my first time! I was a part of a progressive Democratic group of people running for different positions, and there was a party celebrating the group’s work. I was the only obviously disabled person there, and people started discussing going to a movie after the party. This was in 1990, so it was only a couple months after the ADA passed new requirements – and it was really clear there was no thought from the group about accessibility.

I said something but, I just really began to feel uncomfortable, like I didn’t want to be pushing going to the movies with them if they didn’t want— I don’t think it was that they didn’t want me, but… they wanted to just spontaneously look at the movies and not at whether the theaters were accessible. So I kind of faded out from the discussion, and when I went home I called a friend who also had a disability and said “am I a martian?” 

It depends on what the issue is. If it’s something about rights for more people, it’s not responsible for me to “disappear.” There I feel I should be fully engaged with other people, looking at how we strategize, what to do; and you can still feel insecure, but you know that you’re in a group of people who share a similar vision

I think it’s really getting to know yourself, when you need support, how to strategize, thinking short and long term, and then I think there is this inner sense of self and what your limits are when you’re gonna just… fade out into the vapor and when you’re gonna make your stand, so to speak.

~
You can listen to more of Judy Heumann’s insights, in her own words here on my website or on the ol’ XXceedingly Persuasive podcast stream. If you’re inclined, I also highly recommend giving “Crip Camp” a watch on Netflix.

Here’s to you, Judy. We are all eternally grateful!