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To Seem Is Not To Be : And Other Rules of Life, Love and Autism Donna Williams Taught Me

May 15, 1994|MARY KAY BLAKELY | Mary Kay Blakely's last article for this magazine was "Psyched Out," about depression and activist therapy. Her memoir, "American Mom," will be published in October by Algonquin Books

Her alcoholic mother interpreted Donna's strange behavior as a sign that she was possessed by evil spirits. Aside from a weekly paycheck, her father largely absented himself from his troubled family. At age 16, Donna left home. She supported herself with routine factory jobs, but the next 10 years were a constant struggle, including episodes of homelessness and unemployment.

Eventually she moved to London, where her exceptional ability to store facts helped her pass the entrance exam for college. (Donna has scored both genius and retarded on IQ tests.) Haunted by the constant threat of institutionalization, she hid her difficulties from most of her teachers and fellow students. After watching Donna for a few months, however, an observant classmate tried to confirm her hunch:

"Donna, you're different, aren't you?" she asked.

"I guess so," Donna said.

"Just how different are you?" she pressed.

"Put it this way," Donna replied. "I'm a culture looking for a place to happen."

Passing a London consignment shop on her way home from work one day, Donna saw a used typewriter and decided on impulse to buy it. She put in a sheet of paper and, four sleepless weeks later, had the book that "both saved me and destroyed me."

Dr. Lawrence Bartak, an Australian specialist in autism, offered to help Donna begin building bridges instead of walls between worlds. "I think I can now accept that I am disabled, with a very big abled and still quite a dis," she says.

While Donna had much to gain by joining "the world," there were excruciating losses as well--she learned that without a nervous system, inanimate objects could not think or feel. Her treasured objects lost their life with this concept. "I realized I'd lived in a world of object corpses. God has a curious sense of humor," she wrote. She braved the initial loneliness and shock because "I was in love with my own aliveness and completeness." The alternative was not to give a damn. "I gave a damn bigly."

I HAD NOT IMAGINED THREE YEARS AGO that this woman from another world would move me so deeply, introducing me to another way of seeing, another way of knowing. Donna and I stayed in touch after our first memorable meeting, by fax and phone and once, when she returned a year later, through a long weekend visit at my home in Connecticut. Conversations with her are often a humbling experience--though that is never her intention. "What have you been doing all summer?" I'd ask. Well, she'd learned French and German, written another book, composed a musical score for a movie, finished several paintings and was preparing an instruction manual for teachers of autistic children. "What have you been doing?" she'd ask. Well, I was almost finished with the essay I started three months ago. One of us was once thought to be retarded and one of us was not--and all of us, it seems, should rethink the usefulness of labels.

Ours was not to be a conventional friendship. Donna is a wholly mature intelligence with a highly original take on life, questioning the meaning of everything and forcing me to do the same. Last year, as we were walking through my neighborhood, Donna looked up at the sky, stopped abruptly and sang a tune I had never heard before. Did she write that song? I asked. No, she replied, the birds wrote it. She pointed to the telephone lines where dozens of blackbirds were perched. At least I saw birds. Donna saw a musical phrase. The universe is full of unsung music most of us never hear.

A lot has changed in the past three years. She has gained greater insight into the ways of Red People (the "so-called normal people" who are like noisy, vibrating colors to her) and though one is never cured of autism, Donna now grasps more meaning from speech. "You don't have to speak so slowly now," she told me recently.

She's also found a way to reduce the distracting visual overload. Donna's earliest companions were bright spots of translucent color dancing before her eyes--a mesmerizing light show no one else seemed to notice. Much later, she learned that she wasn't hallucinating--the spots were real: Because of her acute vision, she can see air particles of reflected light that are invisible to Red People. Now, she has more visual mastery with a pair of special glasses that "provide context," minimizing the distracting details that could lock her attention for hours.

She has also ceased the tapping, pounding, beating behavior commonly observed in those with autism, "the outward sign of the earthquake nobody saw," Donna wrote. When her senses overloaded as a child, she would bite her flesh like an animal bites the bars of its cage, not realizing the cage was her own body. "My legs took my body around in manic circles as though they could somehow outrun the body they were attached to. My head hit whatever was next to it, like someone trying to crack open a nut that had grown too big for its shell."

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