Tuesday, May 31, 2011

It's Not Acceptable

Preface. This Sunday, Martha, other volunteers and I are joining Katie in the annual autism walk. Marching as “Kate’s Mates,” our team will join thousands of persons all over the country in an effort to raise money for autism research. Kate, 24, has autism – a syndrome with a wide spectrum and a myriad of manifestations. Katie’s particular diagnosis is Pervasive Developmental Disorder (PDD), and she is childlike, charming and (as all her friends know) extremely verbal. Like virtually all individuals in her situation, Katie is too often referred to – usually behind her back – as a retard. That is why her mother and I literally stood and cheered when Glee co-stars Jane Lynch and Lauren Potter appeared in a public service announcement about the use of the R word: “It’s not acceptable.” It’s a message Jane Lynch and her delightfully devious TV character, Sue Sylvester, have been preaching for several seasons. A year ago, when Sue was revealed to be the devoted caretaker of a sister with Down syndrome, Katie's mom asked Sue to make a clear public statement against the indiscriminate use of the R word. Read Martha's blog here: http://martha-antojitosyalabanzas.blogspot.com/

Not long ago an item in The Onion shook me to the core. It made me wonder if I was experiencing early-onset crankiness and was losing my sense of humor.

The Onion published an article was about a person with developmental disabilities. The headline read: “Autistic reporter Michael Falk says the stainless steel CometLiner2 car was lucky enough to escape unharmed from its collision with a man.”

Usually, I think The Onion is very funny. Articles in Our Dumb Century left me chortling for days, especially the story, “Assassination of Archduke Ferdinand spreads fear at Archduke Convention.” I laughed out loud at “Area Bird Creeped Out by Bird Watcher.” I thought, “Violent Death of Human Being Terrific News for Once” (on bin Laden) was responsible social commentary.

But not this story about an autistic reporter. I found it offensive. When I came across the story on Facebook, I added a comment that The Onion had crossed a line. Presidents, popes, archdukes and bird watchers are all fair game because they knew their chosen predilections would attract critics and controversy. But I saw nothing funny about making fun of the disordered thought processes of an autistic man.

One or two persons checked “like” on my Facebook complaint, but clearly most Onion fans thought I was a tight-assed whiner.

“I have two autistic children and I thought the story was funny as hell,” wrote one reader. Another wrote, “I am autistic and I thought it was frickin’ funny.”

So maybe I’m missing something. Clearly, a lot of people think it’s amusing to mimic the demeanor or vocabulary of developmentally disabled persons, who they dismiss as “retards.” One of the most insightful commentators of our day – Jon Stewart of The Daily Show – often uses the words “retard” or “retarded” to label eccentric political views. “Retard” use abounds, not only on Comedy Central but in high schools, college campuses, offices and churches. For adolescents learning to deal with life’s capriciousness, it’s a useful descriptive – stronger than “goofy” and more adult than “stoopid.” But it is a biting epithet, especially to the parents and siblings of disabled children.

Some studies report that 3 percent of the U.S. population is mentally disabled, although one in 100 persons may be born with a harder-to-detect form of autism. It’s understandable that very few persons understand mental retardation or its devastating affects on individuals and families. One of the better known anecdotes is the life of Rosemary Kennedy, daughter of an ambassador, sister of a president and two senators, who was born with a mild form of retardation. For reasons that have never been fully documented, her father – Joseph P. Kennedy, Sr. – was so disturbed by her atypical behavior that he ordered her treated with a prefrontal lobotomy when she was 23. The operation incapacitated her for the rest of her life.

As rare as mental retardation may be, it affects many families. My cousin Donnie, who I haven’t seen in nearly 60 years, had Down syndrome. He was a year or so older than me and I remember playing with him on the floor of Grandpa’s living room in the Catskills. He was a happy, laughing child, oblivious to the fact that the adults seemed deeply disturbed by his behavior. I do not recall his behavior being any stranger than my own at 5 or 6. One day Grandma distributed a pack of candy cigarettes to the kids – peppermint sticks with red tips to simulate burning ash – and we pretended we were smoking like our parents (this was circa 1952). Donnie stuck the red end in his mouth and made happy sucking sounds while we kids laughed and imitated him. But Grandma jumped up and pulled the candy out of his mouth and said, “No! Bad!” To us kids, Donnie was a great playmate. To Grandma, he was a bad example.

Not long afterwards, Donnie’s parents moved to California and I never saw him again. Decades later, when I was a traveling church bureaucrat, I stopped by Auntie’s house in Sacramento to say hello. Her oldest son – Donnie’s brother – was visiting, too. We chatted amiably, updating each other about family news. I wanted to ask about Donnie, who I knew had been placed in institutional care shortly after his family moved west. But I knew well the family sensitivities and didn’t want to ask a direct question.

Finally, I said, “I remember how much fun it was when we kids were all together at Grandpa and Grandma’s. I remember how much I enjoyed playing with Donnie.”

Auntie did not react, nor did her son. But in a few moments they moved on to a different subject, about how bad the winters were in the Catskills and how much better it was in California.

I don’t know whatever happened to Donnie, and clearly it was painful for Auntie to talk about him. He could be in his sixties today, but it’s unlikely. Statistically, a Down syndrome child born in the 1940s would not live past his twenties. But that is changing now and life expectancy is dramatically improving.

Probably Donnie lived long enough to hear himself labeled a retard. He certainly didn’t hear the word from his young cousins because no one ever told us that he had a disability and none of us noticed. He didn’t seem different to us. To us he was not lacking in any of the gifts that made him a great playmate: joy, humor, and a special talent for having fun.

It’s a shame you have to be six years old to know that everyone comes into the world with special gifts and the infinite value God assigns to all God’s children. Later in life, we try to be more analytical about it. But a child’s instinct can be fairly profound. We might not have been able to put it into words, but we knew: Donnie was created in the image of God. Calling him a retard would have been blasphemous.

Also, it's
not acceptable.

Afterward, May 31, 2017. Katie, now 30, lives happily in a Westchester Jewish Community Services group home in Mount Vernon, N.Y. She loves the independence of living in her own home, which is a 20 minute drive from “Mom’s House” in Port Chester.

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