Harilyn Rousso has always been in a hurry, including when she was about to be born. It was the 1940s. Her mother was rushed to the hospital, but the doctor was nowhere in sight. Compelled to wait, the nurses refused to proceed with the birth. They held Harilyn's mothers legs together, trying to postpone the inevitable. They succeeded. They also deprived Harilyn of oxygen. She was born with cerebral palsy.
The characteristics of Harilyn's CP emerged early on. Today, her face is given to uncontrollable grimacing. The size 12 feet that carry her thin body turn in, so that she walks with a lopsided, unsteady gait. Her movements are jerky, nonstop, involuntary, and uncoordinated. Her right hand, with three permanently curved fingers that she likens to small bananas, has a mind of its own. Her voice is odd and sounds strained, though she says it doesn't feel that way; it takes just a little concentration to know what she's saying.
Despite her inauspicious start, Harilyn, now 66, is a powerhouse. She's a founding mother of the women's disability rights movement in the US. She created the Networking Project for Disabled Women and Girls, a national model. She's a former commissioner with the NYC Commission on Human Rights. She's a psychotherapist, an educator, a painter, and filmmaker. She lives in a rent-controlled Greenwich Village apartment that lots of New Yorkers would kill for, and she's in a decades-long relationship with a non-disabled man.
Sounds inspiring, right? Not so fast. Don't Call Me Inspirational: A Disabled Feminist Talks Back is the title of her new memoir, just released by Temple University Press.
Harilyn's book is a collage of themed recollections conveyed in fresh, funny, and moving essays and poems. It meanders through time, mixing past and present. There's the story of the begging woman Harilyn tried to give $5 to who ran away, declaring she would never stoop so low as to "take money from a cripple." Harilyn recalls the neurologist who described her case of CP as something sadly incurable but unfortunately not fatal.
Harilyn talks a lot about cars, including learning to drive at her mother's instigation, an activity that became for Harilyn "a warning against the temptation to be a passenger in my life." As for dating, she confesses having had no idea how or when to talk about her disability. "Should I say right off the bat: My name is Harilyn Rousso. I have cerebral palsy... and yes, I can have sex?"
Harilyn writes about the meaning of art in her life, of her writing and painting, for which she often takes herself--that grimacing face, that wild-willed hand--as her subjects. "My painting and my writing become my mirrors," she writes, "reflecting all that I am and hope to become...a work of art, a creative life in process, a woman open to herself without fear or judgment."
On a blustery winter night, I climb the four flights of stairs to Harilyn's walk-up apartment. I'm enthusiastically greeted by this slightly built woman with bright brown eyes, staring out from beneath a cap of short, dark brown, pixie-esque hair. As I watch her, listen to her, witness her wit, her wisdom, her sense of humor, think of what she has written, her achievements, and the road she has traveled, I have to admit it: I'm inspired.
I can't help it. I have to ask: What's wrong with being inspirational?
"Inspirational," Harilyn says, "is an easy reaction." What she resents is that people feel inspired by the fact that she gets up in the morning, gets dressed, dares to head out the door, and lives her life despite what others see as insurmountable obstacles.
People think, Harilyn writes, that "If you were me, you'd never leave your house and maybe even kill yourself. So I am inspirational because I haven't committed suicide--yet."
Calling her inspirational "without hearing what I say or knowing who I am is just a label or a stereotype," she tells me. "I'd rather you wait until you get past your initial, superficial, prejudicial reactions, see who I am and then decide if you like me or even hate me...at least those judgments would be real."
But wait: isn't it kind of a human thing to be inspired by somebody who's dealt with obstacles--who grew up poor or spent time in prison or had a rotten home life--and went on to triumph? Isn't that sort of like being inspired by Ginger Rogers for dancing as brilliantly as Fred Astaire, but doing it backwards and in high heels?
Harilyn laughs. Her physical "differences," she admits, have at times been obstacles, "but the much bigger obstacle is the way people react to those differences, what they assume, how they translate those limitations into erroneous assumptions about my life and how hard it has been....Honestly," she adds, "my life has not been all that hard....I've had many opportunities. I had good parents who really encouraged me. I have a wonderful partner who I adore. Yes I've faced obstacles, but the prejudice is the biggest. It's daily, and it really wears you down. It's much worse for me than any physical limitation."
It's Harilyn's hope that her book will reach the broadest possible audience. That includes the disability community, especially young women. She wants them to know that "you can claim your disability, acknowledge it and have a full, rich life. It's not automatic--it isn't for anyone. You have to figure out how to do that." Many young disabled women are hungry for that message, which is why Christy Cruz, student at LaGuardia Community College and an outreach coordinator at Independence Care System, is inviting Harilyn to come speak to the support group that Christy started for young women with physical disabilities who are members of ICS.
Harilyn also wants to reach the rest of us, those interested in women's studies, human rights, the arts, creativity, fans of memoirs, and people who just like a good story. And Harilyn does tell a good story. It spoke to me, especially given the long war I have waged against my own female body.
Harilyn says she tried in writing her memoir to figure out why, even as a long-time, deeply committed disability rights activist, she can still at times walk past a mirror, see her reflection and "freak out." She decries the cultural demand that women conform to an arbitrary notion of physical perfection, setting standards that are "unreachable and often unhealthy." And while not in any way minimizing the reality that the cultural demand for physical "perfection" falls hardest on women with physical disabilities, she has concluded, from her long experience in the women's movement, including in those 1970s consciousness-raising groups, that "almost every woman has some part of her body that she hates. We're all struggling with it."
It is that self-hatred that Harilyn addresses very directly in her powerful closing essay, "Ode to My Disabled Self."
"You have been kind to me, dear body, more gracious than I have been to you," she writes. "Of the two of us, you have more class, more wisdom. Let me embrace you as you have embraced me and sense your movements as signs of life, not limits."
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