Listen to us. Listen to us. Listen to us. We’ve been repeating the same things for 50 years. There’s nothing “wrong” with having a disability. But there is a lot wrong with the way we’re treated because of our disabilities. There’s a lot wrong with being excluded, with being segregated, with being discriminated against, with being locked up in institutions, with being denied the services and supports we need to lead good lives. I mentioned earlier that young people are faring a lot better today. But still many are being denied the appropriate education and the opportunities they need to contribute to society, and some are forced into living a life of poverty, often only because of outdated laws and policies.
As part of my series about people making an important social impact, I had the pleasure of interviewing Nadina LaSpina.
Nadina has been an activist in the disability rights movement practically since its beginning, in the very early 70s. She has worked with different organizations, including Disabled In Action, ADAPT, and Not Dead Yet. With her husband, activist Daniel Robert, she co-chaired the Disability Independence Day March of 1993, the first major event of its type, which attracted 3,000 people — a huge number at the time. More recently, also with her husband, she founded The Disability Caucus (originally, of Occupy Wall Street) which intersects and builds coalitions with other groups fighting for social justice. Since the 90s, she has also been an advocate for Single Payer healthcare and has fought to have Long Term Care (or Long Term Services and Supports — a term preferred by the disability community) fully included in current single-payer bills. She has been arrested countless times for doing civil disobedience. Nadina LaSpina is also an educator and writer. She taught Italian at NYU and at Fordham and then went on, in the mid-90s, to teach in the then pioneering field of Disability Studies. She taught at the New School, both in the classroom and online through their distance learning program, courses that she created — including the popular “Celebrating Differences: Disability Culture,” which got her the attention of the NY Times and CBS Sunday morning. Her writings have appeared in publications as varied as Ragged Edge (a disability paper), New Politics (a socialist journal), And Then (a literary magazine), and Bookwoman (the e-zine of the Women’s National Book Association — she won second prize in their annual contest). She is the author of the memoir Such a Pretty Girl: A Story of Struggle, Empowerment, and Disability Pride (New Village Press, July 2019).
Thank you so much for doing this with us! Can you tell us a story about what brought you to start on your career path?
Thank you for being interested! I am an old-school activist. Whenever I joined a movement — e.g. the women’s liberation movement (that’s what it was called back then) or the anti-war movement (the war then was the Vietnam war), or, later, the disability rights movement (and a few others after that, I joined because I wanted to right a wrong, I recognized injustice and wanted to fight against it, I wanted to make this world a little bit better. I didn’t really think of it as a career. In fact, I never earned money from my work as an activist. I did get paid for teaching disability studies, but not a lot.
What brought me to the disability rights movement, back in the very early seventies, was more than anything else they desire to connect with other disabled people. Please understand that there wasn’t a movement yet, just a bunch of people, trying to fight back against what was starting to be seen as discrimination based on our disabilities. You asked for a story, and the story I have to tell is a sad one. My best friend, a disabled girl of my same age, whom I had met in a hospital when I first came from Italy, the country of my birth, had committed suicide. The messages we were daily bombarded with were that disability was a terrible tragedy, and that, unless they could find a cure for us, our lives were going to be very unhappy. We were both pretty girls, and what we both heard was, “Such a pretty girl” (the title of my book), always followed by “What a shame!” with a lot of sighing and head-shaking. We were made to feel unwanted in a world that was then totally inaccessible. As women, we were made to feel we were not whole, not real women. After my friend’s suicide, I considered following her example. I feel my life was saved by reaching out to other disabled people, by sharing and comparing stories and ideas, and realizing that what made us unhappy was not disability, but the way we’re treated because of our disabilities.
Did you set out to start a movement? If so, what was your vision? If not, what did you imagine would be the impact of your work?
With quite a few others, I was in what became the disability rights movement practically from the start. I don’t feel one individual starts a social movement. There may be one individual or one event that serves as the “spark.” But you need fertile ground and you need a lot of people who have been waiting for the right moment to rise up. In NYC, I think the spark” was Judy Heumann, who sued the Board of education when denied a license to teach because she used a wheelchair. That was in 1970. She started the organization Disabled in Action, which is still active today. On the west coast, there was Ed Roberts, a polio quadriplegic, who slept in an iron lung and insisted on attending the University of California at Berkeley.
The 60s and 70s were certainly fertile ground. We had the example of many other movements: the great civil rights movement, the feminist movement, gay rights… Many of us who became part of the disability rights movement had been involved or influenced by those other movements. In my teens I’d been enthralled by the civil rights movement; as a young woman, I’d gone to many anti-war protests; and I called myself a feminist.
Rather than a vision, I’d say we had a need. So many of us (and not just in the US, but in England, and later, in other countries) were fed up, we couldn’t stand being treated like second class citizens because of our disabilities. We felt we needed to fight back.
In the beginning, we didn’t know what the impact of our work would be. In my memoir, I write about how good it felt when we succeeded and made change happen — no matter how small that change was — e.g. a ramp to get into a library. I mentioned earlier how important it was for me to connect with other disabled people. I write in the memoir: “it felt good to belong, to be part of something. I wasn’t sure what that something was, but I knew I wanted to be part of it.”
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
Although this wasn’t funny at the time, I chuckle a bit when I think of it now. When I first became an activist I thought that our passion, the rightness of our cause, and the great minds working in the movement would bring about change quickly. Looking back I see how naïve that was. I learned that wasn’t the case and that the fight is continuous. At no point can you simply declare victory and go home.
Can you describe how you or your organization is making a significant social impact?
The disability rights movement has brought about so much change in the past 50 years. Yet many people still ignore its existence. I still hear, at times, how nice it is that there are lifts on buses for wheelchair users, or braille on elevator buttons, or a sign interpreter at certain official events. They think it has happened because of the goodness of our government. You can’t imagine how hard we all had to fight. I can’t tell you how many times I jumped the curb with my wheelchair to get in the front of a bus, saying “if I can’t get on, this bus is not going anywhere!”
The organization I joined way back in the early 70s, Disabled In Action (DIA) of Metropolitan New York, is responsible for bringing about so many of the changes you see in NYC. Sometimes, we did it through demos, sit-ins, street actions, and at other times through lawsuits. DIA has worked with very good civil rights lawyers through the years. In 1993, Disabled in Action filed the first lawsuit in the nation under the Americans with Disabilities Act (ADA) against a public accommodation.
Maybe I should say a few words about the ADA. People with disabilities all over the country fought hard for its passage (there was tremendous opposition, especially by big business). The ADA was signed into law in 1990 by the first Bush (George H. W. Bush). It is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. Unfortunately, it does not include an enforcement mechanism; the burden of proof is on us, that’s the reason for filing lawsuits. Disabled In Action chose to sue the Empire State Building — for its symbolic value. The only way up to the observation deck, then, was up a flight of stairs. The lawsuit was settled and an elevator put in.
By the way it was at the press conference announcing the ESB lawsuit that I met my husband, Daniel Robert. He was disabled because of multiple sclerosis, and he was the smartest and the strongest activist I’ve ever known. Besides myself (laughs). We worked together all the time. He passed away a few months ago.
Currently, Disabled In Action and a few other organizations have teamed together to file a lawsuit against the Metropolitan Transportation Authority (MTA), because, while our buses have been wheelchair accessible for many years, the subway system still is not. There are 114 stations that have elevators out of 427. And even those stations with elevators may still present access problems to blind and visually impaired people, not to mention that elevators often break down. For many wheelchair users the gap between the platform and the train is also a problem. It’s an old system, but we hope to be able to improve it.
Through the years I (and my husband as well) have also been active with ADAPT, a national grassroots group that makes excellent use of civil disobedience. ADAPT’s main goal is to free people from institutions and ensure they have the necessary services and supports to live in their own homes in the community. Ending up in a nursing home had been one of my husband’s fears. I’m grateful that I was able to keep at home until the very end,
Some of your readers may have heard of ADAPT, because of the media attention ADAPT got in 2017, fighting to stop a bill that would have taken away people’s health care. Images of disabled activists being dragged out of congress and arrested were on TV and all over social media. ADAPT activists had been getting arrested since the 80s, but it wasn’t until they fought against a bill that affected everyone, not just disabled people, that they got the attention. I’ve been arrested so many times, I lost count. Seriously.
ADAPT has changed the whole way of thinking about how and where care is provided. Today, most people agree that it is better to be in your own home rather than in a nursing home or other institution. It wasn’t like that in the past. Some people were incarcerated their whole lives — from childhood until they died — serving life sentences for the crime of having a disability. There are still many, especially in some of the less liberal states, who are languishing in institutions. So ADAPT’s fight goes on. There is right now a bill, both in the House and the Senate, called the Disability Integration Act. If we could get it passed, it would guarantee that no one would ever be institutionalized against their will.
Can you tell me a story about a particular individual who was impacted this cause?
Everyone has benefited, is benefiting, or will benefit from our work. Ours is a minority anyone can join. You may be nondisabled today, but you don’t know what can happen tomorrow. Of course, people don’t want to think about that. Also, disability often comes with aging. If you live long enough, you’ll probably experience a disability. When ADAPT started fighting to free people from nursing homes, we were thinking mostly about younger people. But seniors have benefited. Today, “aging in place,” remaining at home is preferred by most.
Though many barriers and much discrimination remain, overall, young disabled people today are faring much better than we were 50 years ago. They have more choices, there are more opportunities open to them.
I can mention one particular individual: Ali Stroker. Fifty years ago it was unimaginable that a young woman who used a wheelchair could be in a Broadway show — no matter how great her voice. Today, Ali Stryker won a Tony. My husband had been in the entertainment industry before he became disabled, and he did a lot of work to support performers with disabilities. I wish he had been alive to see Ali Stryker win that Tony.
Are there three things the community/society/politicians can do help you address the root of the problem you are trying to solve?
Listen to us. Listen to us. Listen to us.
We’ve been repeating the same things for 50 years. There’s nothing “wrong” with having a disability. But there is a lot wrong with the way we’re treated because of our disabilities. There’s a lot wrong with being excluded, with being segregated, with being discriminated against, with being locked up in institutions, with being denied the services and supports we need to lead good lives. I mentioned earlier that young people are faring a lot better today. But still many are being denied the appropriate education and the opportunities they need to contribute to society, and some are forced into living a life of poverty, often only because of outdated laws and policies.
There’s also a lot wrong with being seen in stereotypical ways — as helpless and pathetic, or as bitter and revengeful, as inferior and defective, as in need of “cures,” and “better off dead” when no “cures” are available. There’s a lot wrong with being feared and shunned by all those who fear their own vulnerability and mortality.
A clarification. In no way do I want to deny the reality of impairments, or minimize the difficulties and, indeed, the pain — physical and emotional — that may accompany them. But we need to understand that disability is a normal part of the human experience, and “a common characteristic of a normal lifespan,” as activist and ADA architect Justin Dart said. I mentioned earlier that ours is a minority anyone can join. We’re all made of flesh and blood, with bones that break and organs that fail… Simply because we were born on this earth, we must all share the vulnerability and frailty — and the ultimate failure — of this human body.
How do you define “Leadership”? Can you explain what you mean or give an example?
I don’t really like to apply to myself the word “leadership.” I rather talk about giving others guidance, sharing with others what I have learned through the experience of living for many years with my disability in this ableist world — you know, show them the ropes, I’ve always enjoyed mentoring young disabled people, especially girls, and giving advice to newly disabled people. After all, my background is in teaching. I like teaching others how to advocate for themselves, how to fight back against ableism. I do civil disobedience workshops, and I’m good at planning and strategizing, in order to make sure we can pull off a successful action when we need to.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
I wish someone had told me back then:
1. That the fight is constant and never ends. We must remain vigilant, or we can lose what we fought so hard to gain.
2. That we can get the laws passed, but changing the way people think about disability and about disabled people is a whole other story. Most people continue to see disability only in negative terms, and only as a medical problem. And continue to see us, disabled people as unfortunate and tragic, or (the other side of the coin) as heroic and inspirational simply for living our lives.
3. That young people would become satisfied with the lives we’ve managed to make possible for them, with the opportunities they now have, and not be interested in joining our continuing struggle.
4. That being in the streets and getting arrested is a lot harder to do as one gets older. That’s why I wish more young people would join us.
5. That one lifetime is not enough to bring about all the changes that need to be made. So, I repeat, we need young people to carry on the fight.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
Enjoy life. Being an activist is hard work. Take time to have fun.
In my memoir, Such a Pretty Girl: A Story of Struggle, Empowerment, and Disability Pride, I tell the story of being in the waiting room at NYU hospital while my husband has major surgery, and I fear for his life. I write: “I found myself praying to an unidentified god. If he makes it, I promise we’ll have more fun. My prayer made me laugh. I was supposed to make a sacrifice, offer my suffering in exchange for a favor from this god. But Danny and I loved life and believed it was our duty to enjoy it.”
Especially because many still insist on believing that our lives, as disabled people, are sad ones, it is important for us never to internilize that negativity, and make sure we enjoy as much as we possibly can. In the first chapter of my memoir, a nun at the elementary school I attended as a little girl tells me I will never be happy (because of my disability). I’m sure glad I didn’t believe her. My husband and I were as happy as two people can be for the 27 years we were together. Toward the end of his life, we tried every day to do at least one thing we both truly enjoyed, even if it was just listening to the music we both loved.
How can our readers follow you on social media?
You can visit disabilityculture.org/nadina and nadinalaspina.com. You can also friend me on Facebook, follow me on Twitter, and subscribe to my channel on YouTube.
Your work is making a massive positive impact on the planet, thank you so much!