As a child, Harilyn Rousso faced a lot of staring and pointing and stupid questions. Because of her cerebral palsy, she walked, moved, held her body and talked in different ways than most people. Yet throughout her early life, she denied that she was disabled and never spoke about it. Perhaps, she says now, she just didn’t have the words.
At 66, she’s now an activist on behalf of people with disabilities, and she’s also a writer, painter, educator, psychotherapist and social worker who embraces her own disability. She has come to see being disabled as a positive source of identity and community. One of many events that triggered her shift in attitude was discrimination at work: After training at a psychotherapy institute for about a year in the late 1970s, she was asked to leave because some of the staff thought that a person with her disability couldn’t be a good therapist. Furious, she began to understand that many of the problems she faced were not caused by the disability, but rather were about prejudice.
As she writes in her extraordinary memoir, “Don’t Call Me Inspirational: A Disabled Feminist Talks Back” (Temple University Press), she began exploring her disability identity just as the disability movement was gaining strength, influenced by the civil rights and women’s movements.
Memoirs succeed when they provide readers with a gut feeling of what the author’s life is like, and Rousso indeed opens the door to her world. The book is structured as a series of short pieces rather than a continuous narrative; in her words, it is more of a collage than a self-portrait. She writes with intelligence, passion, humor and spunk.
Rousso goes back to the story of her birth, told over and over again in her youth: How she was in a hurry to be born, and how the nurses tried to keep her mother from giving birth before the doctor arrived. At age 3, Rousso was diagnosed with cerebral palsy, due to a lack of oxygen at birth.
Her unusual first name was made up to honor her maternal grandfather Harry. Her mother Evelyn was Ashkenazi from the Lower East Side, her father David was Sephardic, born in Monastir in what is now Macedonia. When her parents first met, each family “was totally convinced that the other was not really Jewish” and opposed the marriage. So the young couple got married in secret and had a celebratory wedding later on. Her mother learned to cook Sephardic dishes and soon became the leader of the women in traditional dance at family celebrations. With her large personality she took care of many in the extended clan, but she was always considered other, known as “the Yiddisha.”
Rousso grew up in Queens and then Hewlett Bay Park, L.I., where her family moved in order to be close to the Sephardic Temple. Her father served as president of the congregation; her mother was Sisterhood president. David Rousso, who came to the U.S. as a 13-year-old, ultimately achieved much success in the garment industry. He taught Harilyn to ride a bicycle even though he never learned himself.
She hadn’t intended to write a memoir. After her mother’s death, she found that she wanted to remember Evelyn as the feisty woman who continually pushed open doors of opportunity for her, rather than the angry woman she became in the illness of old age. Rousso signed up for a writing class to explore her own feelings, and her mother began to emerge. Her classmates loved Evelyn and wanted to hear more, and she found the process healing.
She then realized that writing was a good method to explore feelings about herself and her own life. As she explains, “I had done work on issues of being a disabled woman through activism, I began organizations. But there were issues about myself that I hadn’t grappled with, like how I felt about my body, why I’m surprised when I look in the mirror; I had a level of discomfort about myself that was inconsistent with my activist beliefs and philosophy.” So she kept writing, not clear where it was going. The best kind of writing, she says, is writing for discovery.
Her mother pushed her from a young age to be independent, even while advocating for her every need. She insisted that her daughter attend an out-of-town college and also that she learn to drive. When their family doctor counseled against driving lessons, noting that he’d be afraid to be on the road with Harilyn, her mother suggested that he take the train. Now when Harilyn drives, as she writes, “My mother is always there, calming me in stalled traffic, beckoning me to undertake outrageous adventures, and warning me against the temptation to be a passenger in my life.”
When she got to Brandeis University in the 1960s, she left the “hideous shoes, black, with laces, high on the ankle like my grandmother wore in the old country” meant to support her “crooked feet” at the back of her closet and wore sandals instead. The experience was at first lonely and challenging, but she made some close friends and eventually felt as though she belonged. She studied economics and excelled, and nurtured her desire to help others. After graduating, she never moved back home again.
Rousso has lived in the same Greenwich Village walk-up apartment for 36 years, on a leafy street lined with centuries-old townhouses. When I arrive at her building for an interview, the buzzer on the front door is broken, so she climbs down the four flights of steps to let me in. Upstairs, her desk looks out on a great urban scene of stately buildings and sky. A yahrtzeit candle burns in memory of her father. The previous Shabbat, she had been back to the Sephardic Temple to say Kaddish.
Several of her autobiographical paintings are displayed, including a portrait of her distinguished-looking father and other canvases relating to disability. Her colors are strong; one features a younger version of herself behind bars, recalling a doctor who told her parents that she had a hole in her head and should be institutionalized. An angular self-portrait that hints at the author’s beauty is featured on the book jacket.
She took up painting in her 40s when, she says, she had a desire to do something non-verbal. “Words are always very important, but I wanted to do something more tactile, to get out of my head.” She says that painting has been a wonderful way to discover herself.
In the memoir, she writes with candor of being part of a mixed couple, meaning that that is, her longtime boyfriend is not disabled. She also writes of her pioneering days creating and running the Networking Project for Disabled Women and Girls, when she traveled extensively around the country. She doesn’t avoid confrontation when she writes of some prevailing attitudes. Still, barely a day goes by when she doesn’t face stares and comments or people who are “a little bit too nice and patronizing,” although it happens much less frequently that it did in her early years.
“I never question why I have a disability,” she says. “I have never seen it as a negative part of my life; it’s just part of who I am. I don’t blame God. I never wondered, Why me? It’s just what it is. It has given me awareness and opened me in ways I would not have been otherwise,” she says. She sees her imperfect body movements as signs of life, not limits.
“My message is that people with disabilities can have full and satisfying lives, not by overcoming disability but by incorporating it to live in ways that are meaningful.” She adds, “The experience of disability is an important teacher. It doesn’t mean that there aren’t limitations. You need to figure out adaptive strategies.”
She insists that she’s not inspirational. She writes, “My feet are too large for starters — size 12, huge for a woman,” and goes on to talk about how ordinary she is, worrying about the rent, eating too much chocolate and dreaming of the day when shoe stores carry her size.
When people call her an inspiration, she is irked. “It’s not because they know me and see me so that I can inspire them,” she says. “It’s more that the image of disability is so negative that anyone who gets out of the house and does anything is seen as inspirational. I wouldn’t mind being called inspirational when it’s grounded in something real.”