by Tom Connors
Tom Connors writes from North Branford, CT, where he and his wife Maria Elena live with occasional visitors, two dogs and countless cats.
Recently I received e-mail telling me of the death of a longtime friend. News of Leigh Phillips' death was deeply disturbing. She was an advocate, her life a testimony to the capacity of people with disabilities to function, indeed to excel, in a competitive world.
What impressed me most about Leigh was her uncompromising commitment to independence and personal autonomy. In this she was at once unique and typical: Unique in her remarkable talent for embracing life and typical of people with disabilities who strive, not for celebrity, but for opportunity to live an uncomplicated life. Despite this goal these people by virtue of a disability become the stuff of revolution.
When we think of revolution, crisis and adversity come to mind. But social movements are more often incremental in nature, resulting from a series of inconspicuous events.
I am intrigued by the extraordinary yet often uncelebrated lives of ordinary people. In pursuit of a buck and a reasonable relationship with friends and lovers, these people create revolution.
Leigh and I met at the University of Connecticut in the early seventies. She was a tall, imposing woman, with an unruly hairstyle giving her a leonine appearance. Her attractive features conveyed an intense intelligence, heightened by a captivating smile.
She studied dance in her teens, contracting polio at about eighteen. Leigh's paralysis was almost complete. Polio in its arbitrary fashion left her with partial use of her right arm and hand. It compromised her breathing, requiring her to use a respirator while sleeping and occasionally during the day.
A fulfilling lifestyle was a high priority for Leigh, and she pursued it with vigor. I remember learning that Leigh had spent a winter living on a yacht--tricky for a quad, but not unworkable --very tricky though, when one understands the yacht was anchored in Boston Harbor.
After a brief stint as Director of the University's Office of Disability Services, she went to work for the Federal Department of Education, Office of Civil Rights; pursuing her career first in Boston and later Washington DC. Periodically, we would renew our friendship during her trips through Connecticut.
I especially enjoyed the summer visits as she passed through on her way to an island in Dark Harbor, Maine. The summer vacation spot she picked was typical of Leigh: unconventional and intriguing. I never went there, but I understand one reaches the island by a ferryboat that runs twice weekly. My image is a romantic one, with Leigh propelling her power chair over dunes and craggy, rock-strewn beaches, to a Victorian house high on a bluff. Friends who visited her summer retreat tell me my description isn't far off.
Early on in our friendship, my wife Maria and I visited Leigh's apartment with Maria's twelve-year-old sister in tow. During the visit Leigh and I found we shared a common heritage, in that we both had Irish ancestors. This prompted Leigh to whip up a batch of scones from her grandmother's recipe. The ingenuity she applied to cooking tasks--kneading and rolling dough, wielding a cast-iron pan, while using salad tongs to control the stove--was intriguing. From the perspective of my pre-teen sister-in-law, Leigh was missing out on a great excuse: "If I only had one arm to use, I sure wouldn't waste it cooking," she announced after we'd left.
As Leigh's friends can attest, her cooking was hardly a waste. In this, as in most things, she applied her talents creatively. Her kitchen was the focal point of great food and conversation. Much of that conversation was about the role of people with disabilities. In those years we were exploring the changing perception of disability. We saw ourselves as reshaping the expectations of a culture in the throes of reassessing its views of minorities.
In earnest dialogue we discussed societal expectations and how we would change them as we worked to construct a new persona for ourselves as people with disabilities. Those many liberating conversations led to an emerging consensus of who we were. The most important change was in the image we held of ourselves, and how we presented that image to those with whom we interacted.
Some of us, like Leigh, prepared to become lifelong advocates. Others of us used the new awareness as a vehicle for entry into more private activities. We were preparing ourselves to merge with the culture we were changing, to function as co-workers, family members and fellow citizens. Leigh lived a life of productivity and independence, and in so doing caused quiet revolution.
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