DISABILITY ELDERS: An Interview with Bob Williams
"Either we resist and build a better America together. Or we settle for living in hell."
I’ve written enough drafts of the opening to this (Un)Hidden interview with Bob Williams to know that I need to simply get out of the way and let his words speak for themselves.
You can read a formal bio of Williams here or view one here, where you’ll see the infinite ways in which he has been instrumental in building coalitions, strategies, and movements whose victories for disability civil rights—from the Americans with Disabilities Act to the landmark Supreme Court Case Olmstead v. LC to co-founding CommunicationFIRST and beyond—have transformed the lives of tens of millions of people. That’s not an overstatement.
We face a great evil today, threatening the lives of disabled people and many others. Williams makes me less timid. I hope he will have the same impact on you. That’s why this edition of (Un)Hidden continues this fledgling series of interviews with elders in our disability communities.
This interview has been edited and condensed. This week’s (Un)Hidden does not have an audio version.
“A Community of Conscience”
ALEX GREEN: Disabled elders have historically been rare because our lives have often been cut short. In an expansive way—not just thinking of age—who was the most important elder for you when you were coming up? Why?
BOB WILLIAMS: There were many. I’ll mention just three. The first was Franklin Delano Roosevelt. In the mid 1960s, a special education aide read me a book about him, and she mentioned he used a wheelchair. From that point on, I wanted to do what he did. I knew I could help do great things for people—my people. Did he hide his disability? Sure, he hid it to keep others from defining him as inferior. That has always been vital to upending all forms of oppression. The larger truth for me has always been that he refused to let the bullying, bias, and attacks of others prevent him from doing what he knew he had to do.
In ‘72, when I was in high school, I hung out with a crew of young disabled adults slightly older than me. Phyllis Zlotnick was one of them. Phyllis and others saw and loved me for who I was, and who they knew I could become. Including me as an equal in creating something far greater than what we imagine possible—the early days of the disability civil rights movement in Connecticut. We would spend hours using the numbers and letters on a rotary phone to figure out what I was saying. Without her, I would have never made it.
I met Viola Washington when she was in her 40s, lying in a steel cage-like crib on a back ward of Forest Haven, a DC institution where I worked as a court monitor that later closed. From age 7, she spent most of her life in that same back ward, probably in that same crib. Stamped from start as severe and profound—this, that, and the other. Subhuman to some. Vi had speech like mine that was impossible for most to understand, and because of others’ failure, she was “diagnosed” and pigeon-holed as “unintelligible” in every way. Lacking all needs and abilities to be expressive, to understand, to be understood, to think, do, feel, and to give back. In short, to be human. And yet, through spending time with Vi and being fiercely humble, what you came to know through her eyes, smile, and laughter, was one of the most rebellious, resistant, and resilient women I have ever known.
I have outlined what these three individuals have to offer because I believe they illustrate the rich, diverse strengths, insights, examples, and lessons that our disabled ancestors, elders, and young have to offer, and we would be wise to honor and reach out to.
ALEX GREEN: What single experience do you think about and draw from most often in this moment? Why?
BOB WILLIAMS: It was with Vi. We worked for years to finally get her out of her crib and to keep a wheelchair for several hours each day. We also tried but failed to get her a speech-generating device. What I remember more and am most proud of is a meeting we had with her planning team. The following is from a blog I wrote:
“Some of the staff who worked with her shared our belief that she needed an AAC system. Others who worked on her ward, however, questioned her ability to use and understand language. Until, that is, one day when she was present in a meeting with her treatment team. Her physician mistakenly referred to her using another resident’s name. Vi broke into unabashed laughter, and all the rest of us there—except the doctor—got the joke as well. Her laughter transformed hearts and minds, as well as expectations about Viola and about ourselves. On that day, we received a lesson from her in liberation.”
It is a universal lesson; we need to continuously pay it forward.
ALEX GREEN: What is one achievement of disability rights that hasn’t actually turned out to be good for disabled people and why? If we could get rid of it and try again, what would you do in its place?
BOB WILLIAMS: This is not quite what you are looking for, but here is an achievement we have not fully recognized, let alone built upon. here are many stories about how and why the Americans With Disabilities Act (ADA) was enacted that are barely known. The main narrative is that in the 90s, disabled folks brought it about ourselves.
That is understandable, though also ahistorical, like much of our culture today. It obscures, if not completely erases, the fact that disabled people, especially those deported to institutions and other hell holes, have been abused, killed, violated, and forcefully silenced throughout our history. It is because of their sacrifices that we have the law, that we have the laws we have, and that we must persist.
Another thing that should be built on is that everything we did to gain passage of the ADA, we did in unison with the wider civil rights, women, faith, sexual identity, and labor communities. Whenever we met with Senate and House members, we did so in unison. When we strategized and made tough judgment calls, we did it as a coalition. When we celebrated a victory or lamented a setback, we joined together. Not just because there is strength and wisdom in numbers, but because we knew that the ADA has to be about justice for all. It has to constantly attack the fact that racism, ableism, ageism, genderism, classism, speechism, xenophobia—all oppression—are inextricably interdependent and must be eradicated together.
Working together is vital to our survival more than ever. Everything this regime is doing both domestically and internationally is about divide and conquer. Erasing our shared and unique identities. Furthering demonizing and dehumanizing those already oppressed. Currying favor with oligarchs and authoritarians. Either we resist and build a better America together. Or we settle for living in hell.
ALEX GREEN: Many of people in our communities have different aspects to our identities that we draw from. What community’s work has been influential in your own work and approach to disability justice? How?
BOB WILLIAMS: As I have indicated, what has been most influenced my life and career is my lived experience and the work I have done with regard to Forest Haven and other institutions. The first house my parents, brothers, sisters, and I lived in was about three miles from the so-called Mansfield Training School, and my mom had a cousin who was deported there in the 1930s and sometimes stayed with us. I realized early how lucky I was have escaped the fate of hundreds of thousands of baby boomers like me, exiled to such places.
I entered the doors of Mansfield for the first time one summer when I interned with David Shaw, the Hartford Legal Aid attorney who sued the state to move people there into their communities instead. I was repulsed, overwhelmed by what I saw and the stench of dehumanization. I wanted to flee, but I was pulled back by the people lying naked on the mats on the floor. In their eyes, I saw what my life most certainly would have been like but for good fortune and my parents’ love and support. It is true what they say about flight or fight.
That fall, when I went back to George Washington University, I began visiting and advocating for people who had been exiled to Forest Haven, an institution Congress created in the 1920s to rid the Nation’s Capital of its “feeble-minded menace”. Following graduation, I worked for 5 years as one of the Court-appointed monitors, charged with reporting on conditions at the institutions and efforts to move people back into DC neighborhoods. I never got any degree beyond a BA. But I know I received my Ph.D. in what it takes and means to be human and humble by having the chance to grow to know, love, and help tell the stories of Vi, Ricardo, and Donna Thornton, and many others. See here and here.
There are two other things about the work I did back then that I want to note. One day, when my boss and I were about to leave Forest Haven and return to our office in DC, we stopped at its abandoned cemetery. It was a grass lawn devoid of grave markers or any other indication that nearly 400 children, teenagers, women, men, and stillborn babies were buried there. I do not recall how the conversation went, but we recommended that what I called the Wall of Names was placed there. I have found spelling and other errors in it. But I believe the Wall is one of a very few of its kind—I have run across 3 or 4 more. Both the Wall and the Find A Grave website have proven invaluable tools in my ongoing research of our ancestors, and I think similar information is likely available on people who were exiled elsewhere.
As I said to you on Facebook recently:
“During that same time, many others and I contributed research mostly done in musky libraries, which ended up in an amici brief written by the late great Tim Cook and Judith Gran, on behalf of several self-advocacy orgs. It was filed in Cleburne, a 1985/86 exclusionary zoning Supreme Court case, and informed Justice Thurgood Marshall’s dissent. From my biased POV, it paved the way for ADA and Olmstead. Google and read both the dissent and Tim’s A Little History Worth Knowing.
Both are indispensable reads for understanding how racism, ableism, and eugenics intersect and destroy. it has always enraged me how States, etc., have used the cloak and dagger of “privacy” to erase our ancestors’ humanity, lives, and history, and thus, our own. I sincerely thank all those who helped enact the new Massachusetts legislation.
Especially in these times, it provides great impetus and the tools to excavate both the ugliest violence and violations our people endure as well as the progress their lives and sacrifices have compelled to be made possible. How can I learn more about the new history reclamation law and similar efforts elsewhere? I want to do something like this in and for the District of Columbia. Congress can veto such measures, which is one reason to attempt it.”
These are experiences that continue to shape and guide who I am and what I do every day.
ALEX GREEN: What is the single most important thing you’d like younger disabled folks to know in this moment?
BOB WILLIAMS: Disabled people often live in a world of divide and conquer, where we are made to think that people who have different disabilities should not be allies but must be enemies. It is only by coming together and recognizing we share a great deal in common that we gain our true power and strength. As individuals and as a community of conscience, we also must work far more in alliance with non-governmental human and civil rights organizations and funders. There are many reasons for and advantages involved. Lived experience and research indicate that Black, brown, indigenous, and linguistically marginalized people tend to be more likely to become disabled across a lifespan and experience increased discrimination due to it, resulting in pervasive intersecting forms of discrimination, extreme isolation, institutionalization, poor health, and preventable death. We must heed Fannie Lou Hammer’s words, “Nobody’s free until everybody’s free.”
The issues and challenges we face today as people with disabilities, a community, and a country are well known and far more dangerous than we did even during the Reagan Administration. We must push forward.