"Our Lives Are Not Tragedies": A Conversation on Disability Rights

“Our Lives Are Not Tragedies”: A Conversation on Disability Rights

Nadina LaSpina is a long-time disability rights activist and author of the memoir, Such a Pretty Girl: A Story of Struggle, Empowerment, and Disability Pride. LaSpina contracted polio as a baby, and as a child in her native Sicily, was the frequent target of pity by those who considered her doomed to an unhappy and lonely life.

Arriving in the U.S. at 13, she spent most of her adolescence in hospitals undergoing painful treatments in the hope of a cure that never materialized. Against the political tumult of the ‘60s, LaSpina rebelled both personally and politically. She refused to accept both the limitations placed on her by others and the dominant narrative surrounding disability. With her disabled comrades, she took to the streets to demand rights, services and respect. Together, they worked to build the disability rights movement into a global force.

Despite discrimination and stereotypes, LaSpina created a fulfilling life for herself as a successful professor and a tireless fighter. Still a committed activist, she also mentors young disabled women. In her memoir, she offers a much-needed insider’s account of a struggle that continues to this day. In this interview, LaSpina discusses how her childhood influenced her to write her book and how the fight for disability justice is ongoing.

Peter Handel: You were born in Sicily, where as a baby you contracted polio and never developed the ability to walk. The title of your book, Such a Pretty Girl, comes from what people often said to you there. Talk about what this meant.

Nadina LaSpina: “Such a pretty girl” was always followed by “What a shame!” And it wasn’t just the words, but the way they were said — with such sorrow, anguish. As a little girl, I couldn’t understand why people were so sad when they looked at me. I thought my being pretty made people sad. Usually, my mother would start crying. I hated to see her cry, knowing she cried because of me. I thought it would have been better if I were ugly.

What I remember most about my childhood is the pity, the oppressive religious atmosphere in the little town, my mother carrying me to the church and the convent across the street, where I went to school, and handing me over to the nuns, who carried me to the classroom — with that refrain always following me, Che peccato! (“What a shame!”)

The message I got so early in life was that I had no future to look forward to. One of the nuns told me straight out that I would never be happy. A girl’s future meant marriage and children. Beauty was a commodity that would land a girl a good husband. But that wasn’t true for me, since, being ciunca, crippled, I would never marry and have children.

After my father succeeded in bringing me and my mother (I’m an only child) to the U.S. so I could get better medical treatment, that refrain, “Such a pretty girl; what a shame,” and the idea that beauty was wasted on a disabled girl, followed me.

Your father seemed convinced that American doctors would cure you. Throughout your book, you talk about how problematic the focus on a “cure” is, but your father clearly loved you, and his quest for a cure was an expression of that. How did you navigate that emotionally? Why do you think the focus on curing is misguided?

Did my father, a very smart man, believe I could be cured of polio? Maybe his wish was so strong that it obscured his judgement, or maybe he wanted me to believe it, or wanted me to know that he would do everything possible (and even the impossible) for me. But what I heard and feared growing up was that, unless I could be cured, I had no future. What I understood was that I wasn’t good the way I was, I wasn’t the daughter my father wanted. In various hospitals, I was tortured in the quest for the elusive cure. Over and over again, I felt I failed my father by not being cured. But I knew my father loved me and I knew he was proud of me, so at a certain point, I let go of those feelings of failure.

What I developed instead was an intense aversion toward the word “cure.” As an adult, I would go on record telling The New York Times I was proud to be who I was and would not take that miracle pill, if it existed — a ridiculous notion, of course. I was really talking about identity. It had taken so much time, so much pain and struggle, to forge the identity of a proud disabled woman. I didn’t want to be non-disabled.

Focusing on cure gives false hope, when a certain condition is obviously permanent. It encourages people to put their lives on hold. We all need to live our lives in the moment; we need services and supports, access, equal opportunities now. Internalizing the commonly held opinion that, unless cure is possible, life will be sad and pitiful is extremely damaging.

I am not against research to treat and cure diseases. As a disability activist, however, I want to make sure taxpayers’ dollars don’t only go to medical research but go to make the world more hospitable and welcoming to those who will not be cured.

Throughout Such a Pretty Girl, you return to the theme of pity and how much you resented it. Why?

Pity is dehumanizing. It makes those of us who are the objects of pity feel we are “other,” we are “less than.” It makes the pity-givers feel happy they are not like us. That was the message of the telethons that I saw throughout my adolescence and young adulthood: give money to thank god that your children are not like these poor, unfortunate ones. The disability movement took a strong position against telethons. Disabled In Action held demonstrations in New York City against the United Cerebral Palsy telethon back in the ‘70s, and protests against the Jerry Lewis/Muscular Dystrophy Association telethon went on for many years throughout the country.

Pity objectifies us, erases our individuality. There is no empathy in pity. No identification with another person. If there were identification, all would have to acknowledge that there is no difference between disabled and non-disabled; we all have the same human body, made of flesh and blood, with bones that break and organs that fail. “Disability is just a normal part of the human experience, and a common characteristic of a normal lifespan,” as Americans with Disabilities Act (ADA) architect Justin Dart [Jr.] said. If they live long enough, all will experience disability. It’s in order not to face their own vulnerability and mortality that many would rather put up that wall, which is pity, and at times can also be contempt.

You spoke at the Women’s March in New York City in 2018 and revealed that you had been sexually assaulted in the hospital. You also discuss this in your book. It seems we rarely hear accounts of disabled women being targeted in this way. Why is that?

At the Women’s March, I started by thanking the #MeToo movement for giving women the courage to speak out. For the first time in history, women are being listened to and believed, rather than being blamed for what happened to them. I mentioned that the instance of sexual assault among disabled women is higher than it is against non-disabled women and even higher for women with intellectual disabilities.

We don’t hear about disabled women being sexually assaulted because they are less likely to report it. Many have intellectual disabilities, which may make it harder for them to speak out. But most of us — whatever the disability — have been conditioned to think of our bodies as defective, and have been made to feel we should be grateful for any sexual attention we may get. We are also frequently not believed when we come forward with accusations. Some of us may have become so accustomed to our bodies being handled, probed, cut up, that it may feel as if our bodies don’t belong to us but are common property. That’s how I felt, when I was molested and assaulted repeatedly in the hospital. I didn’t even recognize it as abuse.

In recounting my assault, I wrote:

A scalpel or a penis. What was the difference? I’d gotten used to strangers touching me, handling me, manipulating me, doctors cutting me up, over and over again, inflicting pain. Pain or pleasure. What was the difference? Did it matter what they did to me? After all, what claim could I have on this defective, damaged, disabled body? Wasn’t I supposed to be grateful to the doctors who were trying to fix it? Wasn’t I supposed to be grateful to any man for any attention I could get?

It was in the disability rights movement that you developed your voice and also met the love of your life. How did you get involved in activism?

I like to think that protesting against injustice is in my blood. I remember, when I was a child, my father going down to the town square to protest the discrimination against Sicilians in Italy. I also remember how excited I got, as a teenager in a convalescent home in New York, to hear about the civil rights movement and the March on Washington in 1963. I dreamed of being a freedom rider. As a young adult, I attended protests against the war in Vietnam and got involved in the fight for women’s rights, proudly calling myself a feminist. I was always ready to fight for “rights”; yet, I never thought that as a disabled person I had rights — until the disability rights movement.

The disability rights movement saved my life. My best friend, Audrey, who was also disabled, had listened and believed those messages of doom that came from all around us — our lives were seen as tragedies, our futures held no promise of happiness; because of our disabilities, we weren’t considered “real” women; we would never know love. Tragically, she committed suicide.

After her suicide, I fell into a deep depression. I thought she had done the right thing. Looking for a lifeline, I turned to some disabled friends. I found out that something new was happening — meetings and protests. The very idea of fighting back sounded both alien and exciting. I had read in the papers about a young woman, Judy Heumann, who sued the Board of Education in 1970 after being denied a license to teach because she used a wheelchair. She had founded the organization Disabled In Action. I met her, joined that organization, and discovered how empowering organizing and fighting back together as one could be.

Disabled In Action is still active, and I’m still part of it. Later, I joined ADAPT, a grassroots group that focuses on freeing people from institutions and securing home-based services. I’ve been arrested with ADAPT countless times.

I met the love of my life, Danny Robert, on January 27, 1992, at a demonstration at the Empire State Building. Title III of the ADA, calling for the accessibility of places of public accommodations, had gone into effect the day before, and Disabled In Action had decided to file the first lawsuit in the country under the ADA. The observation deck, then, was up a flight of stairs. The Empire State Building was made accessible, and Danny and I fell in love. For 27 years, we lived together a life full of passion and purpose. He passed away recently.

You’ve been arrested over 50 times for civil disobedience. What is it like to go through that process for you?

I want to make clear that civil disobedience is a last resort. We get arrested because other ways of bringing about needed change — e.g. letter-writing campaigns, meeting with legislators, using our judiciary system, engaging the media — have failed. At times, civil disobedience may be used to supplement and reinforce other methods of doing advocacy — when success starts to seem unlikely.

Getting arrested, for me, is the ultimate way of showing my commitment.

It isn’t pleasant. It could mean being kept in custody for many hours, or overnight, all belongings taken away until I’m released, a police woman following me to the bathroom to watch me pee…. But I’ve found it’s always empowering.

You write about coming to not only accept your body but to see it as beautiful. In a society awash in ableist beauty standards, this was a difficult task. How did you change your perception of your body?

Very slowly.

When I was in the hospital with Audrey, we would only look at our bodies in the bathroom mirror from the waist up, our legs covered by a sheet. We were happy when our legs were hidden by casts. We looked at the models in Seventeen magazine and cried, knowing there was no way we could ever be like them. For many years after that, I looked at myself in the mirror only from the waist up.

It was getting to know other disabled women that started the change in me. It was very gradual. I noticed some didn’t mind the way their bodies were different than non-disabled women’s bodies. A little at a time, I stopped comparing myself to models in magazines and started looking at my “disabled sisters,” and liked their different bodies, and liked seeing the similarities in the way my body and their bodies were different. I started noticing their beauty before I could see my own. I was 45 — and in love with my husband, Danny — when I finally looked at my naked body in the mirror and was able to see beauty there.

The flourishing of disability culture — our artists depicting disabled bodies and performers flaunting their differences on stage — made me appreciate more the beauty of my own body. When teaching disability studies, I tried to get my students to see “the frailty of atrophied limbs as interesting as the frailty of a Giacometti sculpture, the curvature of scoliosis as fluid as a Matisse cutout, the classic timelessness of the Venus de Milo in a body with missing limbs…”

Throughout your book, you talk about how you dislike being called “inspirational.” First, tell us why. Second, what would you say to someone who finds you inspirational because of how you confronted ableism both personally and in a larger political context?

When strangers who know nothing about me tell me I’m inspirational because they see me out in my wheelchair, what they’re saying is that, in my place, they would not want to be seen in public; they’re surprised I’m not hiding at home crying over my unfortunate state. People have actually said to me: “You’re so brave being out and about. I couldn’t do it. I’d probably want to kill myself.”

On the other hand, if they tell me I inspire them because I’ve confronted ableism, or because of my activism, or because I wrote a good book, I would simply say, “Thank you.”