(Christian Courier column, Jan. 28th, 2013 issue)
One of those students, John Curtis, has Down syndrome. In the beginning, at eight years old, he was extremely shy and not very verbal. He could communicate with his family, but I could hardly understand him.
I learned patience. I did my best to interact with John Curtis on his own terms. I prayed with him about his family and praised his faithful giving, a loonie every week. When we finished our lesson, we played games. Slowly, he warmed up to me. It took years, but we finally got to a place of relaxed friendship. He would tell me which game he wanted to play instead of pointing. He liked Pop-o-matic Trouble the best. He’d pop the bubble and urge on the dice with Vegas enthusiasm: “C’mon, six!”
Once he mentioned a girl that he liked at school. I couldn’t quite make out her name. “Nancy?” “Francine?” He wrote down the first letter: A. Finally I guessed, “Angie”? “Yes!” he shouted in delight. “That’s it! You got it! Good job!”
Right now I’m reading Far from the Tree by well-known journalist Andrew Solomon. Solomon, who’s gay, explores the parenting of children who are “far from the tree,” who present unfamiliar needs to their parents, as he once did to his. He investigates families coping with deafness, dwarfism, Down syndrome, autism, schizophrenia, multiple severe disabilities, prodigies, children from rape, children who become criminal and those who are transgender.
It’s a sobering read. Parenting is a navigational nightmare for many of these families. Marriages wither. Parents burn out. Some operate in a vacuum, with inadequate information and no support. Others are bombarded by competing opinions almost immediately. Fierce divisions exist within the communities that spring up around these conditions. Those who support prenatal screening, with the option of abortion, against those who stand for the sanctity of life, calling for respite care, educational programs and appropriate housing. Those who lobby on behalf of their particular disability in order to procure government funding against those who defiantly reject being labelled. Take the issue of dwarf-tossing, for example. Yes, you read that right. Some Little People are mobilizing to have this “sport” outlawed. Aside from its inherent indignity, the activity is hazardous to skeletal structure already compromised at birth. Yet, other Dwarfs vigorously oppose such advocacy, asserting their right to a lucrative income. Even the use of identifiers such as Little People and Dwarfs is divisive and debatable.
Ethical complexities surround “identity” versus “illness” in our culture. Solomon points out that the very existence of genetic screening exerts enormous medical and social pressure to use it. Michael Berube, a disabilities advocate, cites a study which showed that women who do not use prenatal testing or who continue a pregnancy knowing the child will have a disability “were judged more responsible, more to blame, and less deserving of both sympathy and social aid.” The ramifications gather coldly in the subterranean currents of public opinion. Bluntly, if you choose to have a child who requires costly educational support or expensive medical intervention, don’t count on society to help shoulder the burden.
Or, to highlight another dilemma, consider this. The Deaf culture has finally achieved a notable level of public acceptance after centuries of marginalization. Now it is being undermined, potentially even dismantled, by the increasing popularity of cochlear implants. Similarly, just as Little People move into mainstream media and political influence, gaining a respect often denied in the past, treatments such as limb-lengthening and cosmetic surgery are emerging as attractive options to the next generation.
Is the problem the disability or the societal discrimination against those who are “different”? In light of Solomon’s research, the question reveals itself as hopelessly reductionist. Sometimes it’s the impairment, sometimes it’s the prejudice and, often, it’s both. Moreover, whether by way of “selective termination” or by advances in medical technology, reducing a “diverse” population has consequences. Solomon warns, “Accommodations are contingent on population; only the ubiquity of the disability keeps the disability rights conversation alive at all. A dwindling population means dwindling accommodation.”
Back to my friend John Curtis. When we see each other at church, he gives me a hug. I give him a smile and ask how he’s doing. He belongs; I belong. Both broken; both redeemed; both loved by God. Solomon’s book is significant, but it doesn’t offer a more hopeful or better answer than this: John Curtis and I are not far from the Tree at all. We’re branches, grafted on the one true Vine.
(With gratitude to the Beintema family for permission to write about John Curtis)