How I Will Change the Face of Disability on the Planet
(for the Ethel Louise Armstrong Foundation)
You already are,’ a friend told me when I told her about the required title of this essay. She meant the writing I’ve done for magazines like New Mobility and Inside MS, as well as my work on “The Largest Minority,” a show on WBAI Radio here in New York City. She was also referring to what has driven both of the above: my twenty years of living with multiple sclerosis, a chronic degenerative disease of the nervous system that has at different times left me too dizzy to hold my head up, stammering, unable to walk, or crying in pain with tonic seizures -- each of which episodes has its echoes now in my daily life (intermittent stammer and vertigo, impaired gait).
But what you want to know, I think, is what I will do with all of the above. How can a writer, a journalist and storyteller, have a concrete impact on the lives of people with disabilities?
When people ask my journalistic specialties, I have tended to answer that I have three main ones: human rights, military issues, and “the intersection of fitness and disability.” While the market demands this kind of niche thinking, I’m hoping to break down as many of those barriers as possible – and thus to help shatter the concept that there are people with disabilities, and then there are “normal people.” As American society ages, awareness is just beginning to grow that most people will eventually join the ranks of the “physically challenged.” Certainly every phone call from the cousin who’s just started a round of chemotherapy, the mother of a son who just came back from Iraq with a constant ringing in his ears, the grandmother who needs a ride to the grocery store should remind those who consider themselves “not disabled” that our relationship to our own health can alter our lives permanently. But they’re more likely to mutter those immortal words, there but for the grace of God go I. And so far, too few connect those experiences “the disabled.” Those of us who, for whatever reason, have had to grapple with a heavier deck of cards from the beginning aren’t “the disabled,” or “people with disabilities,” or whatever formulation you prefer. What writers can do is make that fact real – so that we’re neither abstract conversations about justice or medical efficacy or perky little “inspirational” stories on the 11 o’clock news just before the weather.
I’ve already been privileged to tell stories of people who’ve refused to accept the categories handed them by doctors, whether it was Jimmie Heuga, former Olympic skier who ignored doctors’ advice, after his diagnosis with MS in 1972, not to exercise, eventually founding a center that helps people with MS integrate exercise into their lives; Barry Wallenstein, a poet and college professor who kept his MS diagnosis under the radar for years while maintaining a full class load and an active performance schedule; competitive swimmer Cheryl Angelleli, whose SCI from a 1983 diving board accident kept her out of the pool for 14 years, until aquatherapy reminded her what she’d missed (I had the privilege of interviewing her for New Mobility Magazine before she medaled in the 2004 Paralympics); and Cynthia Nichols, an HIV-positive former drug addict who’s become a certified substance abuse counselor and coordinator of support groups for women with HIV.
Each time, as much as word count allows, I’ve worked to paint a full picture of their lives: Heuga sharing frustrations as well as accomplishments, Angelleli confiding she was about to be married, Wallenstein joking about his wild 1960s lifestyle and the joys of his grown children leaving the nest. And Cynthia and Daria, the two women with HIV, had to share a little of their love lives along the way – as well as economic conditions that highlighted broader issues than even their illness.
That last example stands out a little from the rest; it points to some of where I hope to go as a journalist. I’ve written more about people with MS than others, largely because of my semi-regular gig with Inside MS. And I’ve categorized most of the work above as “looking at the intersection of fitness and disability.” But as I expand, after journalism school, to larger markets, as I hope to do, I’m determined to integrate the “disability issues” coverage into broader considerations about health, about resources, about justice and human needs. When we talk about fitness, we don’t ask – fitness for what? Stories like those of my friend Brendan Costello, the producer of “Largest Minority,” whose vigorous career as a writer and radio journalist is deeply hampered by his constant battles with the New York City subway system, aren’t “disability stories”: they highlight the hazards of our hyper-competitive, Type A society where resources are too rarely directed to human needs (like enough subway elevators for Brendan, who’s been in a wheelchair since 1998, to make his way effectively).
Disability, as it’s generally defined, raises questions about resources public and private. John Hockenberry, whose work awes me, has written about how Israelis in wheelchairs tended to be more affluent and athletic (“What’s your sport?” he was asked) than Palestinians who were busy tricking up wheelchairs from spare parts; in the United States, law firms and earnest nonprofits are kept busy helping people fight to get Social Security to reimburse them for needed therapies. But why do all the current “Social Security” stories leave out the reality for people whose health has been impaired on a long-term basis? And the environmental implications of autoimmune disease have barely been touched.
How will I change the face of disability? By eliminating it, because human rights are redefined to include the right of every human being, whether it’s my autistic nephew, a war veteran, or a child in the South Bronx crippled by asthma, to fulfill his/her potential as a full member of society.
Jim Ferris, a writer from the Midwest, recently came out with a book called Hospital Poems, which I was able to review for American Book Review. He begins his book with the declaration: Let me be a poet of cripples,/of hollow men and boys groping to be whole…. all slipping and falling toward the cavern we carry within, our hidden void.” “Our hidden void.” With that inclusive “our,” Ferris demands not compassion but empathy. Not just empathy but noise. Not just noise but the most profound kind of respect. That’s the demand these stories can make.