Photo courtesy Tom Sullivan
Tom Sullivan
Over the holidays, my Aunty Sue, visiting from Honolulu, loaned me her library book called Adventures in Darkness by Tom Sullivan, an American singer, actor and writer. When he was born prematurely in 1947, Sullivan was given oxygen, which saved his life, but destroyed his eyesight. Sullivan’s autobiography, subtitled “Memoirs of an Eleven-Year-Old Blind Boy,” describes a pivotal summer during which he was suspended from the Perkins School for the Blind after escaping campus in a most memorable way. (Perkins is a few miles from Boston, and the escape involved a rowboat and, ahem, the Coast Guard.)
A boarding student at Perkins since age 5, Sullivan sought freedom not because Perkins was a terrible place, but because of the otherness of a school exclusively for children who were blind. Banished for the summer, Sullivan found himself separated again — this time by a protective fence around the family home and yard. From the perspective of an active, intelligent, lonely child, the fence didn’t keep the world’s dangers out as much as it kept him in. He spent the summer trying, with the help of his colorful father, to literally get outside the fence while also tearing down symbolic fences his mother and well-meaning others thought were for his own good.
I won’t give away the ending, but Sullivan later speaks about the Americans with Disabilities Act (ADA), and how he’d thought it would tear down those symbolic fences. He concluded that while the ADA helped in some ways such as improving accessibility, a lot of mental fences remain among well-intentioned folks who believe people with disabilities need to be protected and separated.
A day after finishing Adventures in Darkness, I watched a short CNN film called All-American Family. Twenty-year-old Kaleb is the only member of the Pedersen family who can hear. His parents and siblings were born deaf and are well-loved members of the large Deaf community in their hometown of Pleasanton, Calif. Kaleb acknowledges that he wishes he’d been born deaf, too: “I feel like the odd one out,” he said. He feels he can never fully be part of the Deaf community and culture. His younger brother Zane once tried a hearing aid and loved being able to hear. But he eventually gave it up, saying he realized “it wasn’t the most popular idea” in the Deaf community.
The Pedersens do not consider deafness a disability, and they don’t think there is anything “wrong” with them. Mother Jamie says she felt she had given Zane “the greatest gift” upon realizing he was deaf.
Having just read Tom Sullivan’s book, it was interesting to learn that at least some in the Deaf community are fine with some separation — at least enough to enable them to form, nurture and love their own Deaf culture. The two perspectives, Tom Sullivan’s and the Pedersen family’s, seemed at such odds.
Then I realized: Isn’t this just called “being human”? We make our own choices — to marry or not, to have children or not, to follow a faith or not, to follow in our family’s footsteps or to forge our own paths, or to adopt something in between.
Why should our perceptions on disability be any less unique? Why should we all have to think the same way or want the same thing? And especially, why should all people with disabilities want the same thing, when they’re all unique individuals?
Thus begins another year of appreciating not just the individual nature of complex rehab technology, but also the right of individual clients to be, well, individual. However you personally choose to celebrate it, with resolutions for improvement or by resolutely avoiding those traditions, have a happy new year.
