NSCIA Members in Action: Clare Willson and Joe Pagano; A Graceful Memoir

Clare Willson and Joe Pagano: Two Wheelchairs, One Committed Relationship

New York members Clare Willson and Joe Pagano are rolling proof that having a spinal cord disease and using a wheelchair doesn’t mean you can’t find love. Pagano, 65, has PPMS and has no use of his legs. Willson, 54, has SPMS and is paralyzed on her left side. Over the seven years since he found her on a disabled dating site, they have figured out how to perfectly complement each other and share a romance and a life limited only by their imaginations.

Everyone in town knows Clare Willson and Joe Pagano. If one goes out alone, their neighbors ask where the other is.

Everyone in town knows Clare Willson and Joe Pagano. If one goes out alone, their neighbors ask where the other is.

After trading emails and chatting on Whispers4u.com, a dating site that caters to people with disabilities, everything seemed good, except for the 700-plus miles that separated them: Pagano lived in Syracuse, N.Y., and Willson in Wise, Va. By the time they agreed to meet face-to-face, Pagano was already falling for her.

“We agreed on Roanoke, Va.,” he says. “I drove nine hours and she drove three. I knew I was in trouble.”

For the next three years, they each took turns driving 12 hours to visit the other – Willson in her adapted van and Pagano in his unadapted SUV.

“People say, ‘Well, gee how can you sit so long?’” Pagano recalls.

“There are some good things about being in a power chair,” Willson chimes in. Tired of the long drives and convinced of their compatibility, they eventually agreed to take the plunge and move into Pagano’s house together. They haven’t looked back since.

They’ve learned to rely on each other’s different strengths to lead active, independent lives. If Pagano falls, or needs help getting back in his power chair, Willson can grab his Paraladder or provide a hand. If Willson needs food cut or help with an art project, Pagano is there. Sharing a disability, even if their limitations are not the same, has also made it easier for them to relate to each other and provide emotional support. “He gets what I’m about and all the personal and bodily functions that come with my disability,” Willson says.

Aside from the occasional traffic jam — “we need traffic signs in our hallways because of our power chairs,” says Willson — they enjoy a smooth home life. Willson is a writer and an artist, specializing in images created out of recycled metal. Pagano volunteers with a non-profit for small businesses and does crisis counseling.

They each have their own accessible vans, and are known at all the hot dining and entertainment spots around town. “It’s pretty hard to miss two people who are always out enjoying life in wheelchairs  together,” Willson says. When they aren’t out — and it isn’t snowing or frigid — they can likely be found in their garden. They’ve raised the beds and laid concrete pavers to make everything accessible, but that doesn’t prevent the occasional mishap.

“Every so often, bending down one of us falls out of our chair facedown into the rose bush or vegetable garden,” says Willson. “We always have our cell phones, but the neighbors are used to coming over and helping us.”

Listening to the two complete each other’s sentences and gently poke fun at one another, there is little doubt they are a good match. With the right blend of determination, hard-headedness, humor and affection, they’ve showed love doesn’t have to brake for disability.


Member News: A Graceful Memoir

A-Life-Cover-newA Life Not With Standing
by Chava Willig Levy
CreateSpace, 250 pp.
Reviewed by Gary Presley

Chava Willig Levy’s newly issued memoir is a tale full of good humor, of appreciation for her Orthodox family’s unending support, of her knowledge, appreciation and love of music, and of the blessings of marriage and family all told with warmth and grace — and of a life after polio.

What about that disability? Levy was paralyzed by polio before Jonas Salk’s discovery began to chase that scourge. Levy writes of her illness, her seemingly endless follow-up treatments, her surgeries, and finally moving away from rehab and therapy and into the world, a place where she fought toward independence. Fought? Yes, because all this was accomplished long before society began to open its doors to people with disabilities. Let’s call it the “bad old days.”

Perhaps that’s why there is so much within this memoir that echoes with optimism, with a vision that looks beyond paralysis and its limitation, toward the ideal of a life well-lived. Levy’s life-long love for music, and the discussion of its place in her life, are segments in which she is most articulate in expressing the deep emotional connection she feels to that art and the place it has held in her life.

The elemental themes of the memoir are two: family and love. Levy comes from a close-knit Jewish family, one with members left behind to be consumed by the Holocaust. Through the memoir, there runs a current of love, gratitude and respect for Imma and Abba, her mother and father. Others appear too, but for one paralyzed as a toddler, the love and nourishment of mother and father are fundamental to a happy life, a life filled with its own successes — published author, educator, counselor and disability advocate. She’s worked in education, government, private industry and appeared as a motivational speaker.

Levy also speaks frankly about what many of us who cope with disability struggle over — the need for, the desire for, romantic love. We who look differently and perhaps act differently live in a culture where the plastic values of appearance are unattainable, even more so for many of us with disabilities. It is culture that values a certain artificial physical perfection as the romantic ideal. To be a woman or man in a wheelchair is to be perceived as “the other,” as something less than desirable.  Levy writes movingly of the emotions of a young woman hemmed in by circumstance. It is easy for those of us who have struggled with the same desire to empathize with her as she begins to internalize that there is no good answer when we ask our broken selves, Will I forever be alone?

It isn’t fair, of course, that our romantic dreams, our need for the fulfillment of the pair, rests on such flimsy circumstance, but fairness is irrelevant to circumstance. The universe rewards, sometimes randomly, sometimes graciously. Levy eventually married and had two children.

There is no fairness, as such, in this review. A reviewer who has lived a somewhat parallel life can only say, this book offers you a truth, a story about a little girl damaged by polio who grew to be a beautiful, accomplished woman.

The memoir is short and succinct. Levy is an accomplished writer. If you want to know the havoc caused by a disease that is no more, you will find the knowledge here. If you want to know what can be made of any life with optimism and determination, you will find it here.

Gary Presley is a polio-quad and essayist whose memoir, Seven Wheelchairs: A Life Beyond Polio, is a publication of the University of Iowa Press. His essays have appeared in venues as varied as The New York Times to The Ozark Mountaineer. He regularly reviews for Kirkus and Foreword.

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