"We Jews protest and remonstrate against suffering," writes Rabbi Shmuley Boteach in a recent blog in The Huffington Post. "We don't find spiritual purpose in it. We fight it, and, to the best of our ability, cure it." Boteach rails against those who see the disabled child as a blessing, sent to teach the virtues of purity and absolute innocence. "All children deserve to be healthy," he proclaims, professing himself unable to explain why babies with disabilities are born at all.
As the parent of a child with Down syndrome, I too resist the idea that my son's disability is a blessing, a sign or a lesson. However well intentioned, such explanations diminish his humanity, reducing him to a mere reflection of other people's concerns. But from here, the rabbi and I part ways. Although he writes about disability in general, he focuses many of his observations on children with Down syndrome and their families. And it is here that he gets things terribly wrong. Let's start with the many inaccuracies that litter his post. Equating Down syndrome with suffering, Boteach praises the "doctors who work tirelessly so that this disease can be purged and children came into the world healthy." Down syndrome is not a disease. It's caused by a relatively common genetic accident resulting in an extra 21st chromosome. Although some people with Down syndrome are susceptible to certain medical problems, they are not sick simply because they have Down syndrome. We are frustrated when the doctors who treat my son seem confounded by the idea that someone can be both healthy and disabled.
Nor are people with Down syndrome perpetual children, an idea linked to the damaging misperception that they cannot be educated. In the past, parents were advised to institutionalize a child born with Down syndrome, who, they were told, would remain in a perpetual state of dependence. Sadly, such beliefs became a self-fulfilling prophecy. Denied nurture, stimulation and basic medical care, it's no wonder that children with Down syndrome failed to reach their full potential. A younger generation of adults raised at home, educated and given opportunities to flourish is proving how many of the negative qualities associated with Down syndrome are actually the byproducts of institutionalization. The 2009 film "Monica and David" documents the joyful, loving relationship of a married couple with Down syndrome. Actor and singer Chris Burke, musician Sujeet Desai, and champion swimmer Karen Gaffney attest to the many things adults with Down syndrome can accomplish. To assume that people with Down syndrome are inherently innocent and childlike is to prematurely foreclose the possibility for adult relationships and opportunities.
But what's most troubling about Boteach's essay is his confident claim that Down syndrome causes suffering to individuals and their families. There is plenty of evidence to contradict his claim. Just read the work of authors Chris Burke, Jason Kingsley and Mitchell Levitz. Sure, people with Down syndrome experience frustrations and disappointments. But more often than not these are because of being denied the opportunities enjoyed by their peers, forced into infantilizing living situations or placed in unrewarding work programs. People with Down syndrome are capable of experiencing the same satisfactions and passions as the rest of us. Nobody watching "Monica and David" dance a sensual, joyous salsa at the end of the film could equate Down syndrome with suffering. Nor do the families of people with Down syndrome suffer more than average. Parents like Michael Berube, Amy Julia Becker, Martha Beck and Jennifer Graf Gronenberg have written about the rewards of raising a child with Down syndrome. And when it comes to siblings, it would be hard to say that Dr. Brian Skotko of the Children's Hospital in Massachusetts, Tiger Mother Amy Chua or Olympic snowboarder Kevin Pearce were damaged by having a brother or a sister with Down syndrome. I know hundreds of more ordinary families who would probably describe themselves as experiencing degrees of suffering similar to those of the rest of the population. Very few would attribute that suffering to Down syndrome. When we do experience suffering, its causes are often systemic. We suffer when we hear "retard" jokes in Hollywood films and coming from the White House, when teachers think our children can't learn, or when they are excluded from social opportunities. These problems aren't caused by Down syndrome, but by ignorance and prejudice.
Its important to resist the misperception that disability necessarily comes hand-in-hand with suffering. We live in at a moment where medicine promises to eliminate pain. People with disabilities inspire fear and disgust in the able-bodied because they seem to suggest the limits to this promise. But research shows a dramatic difference between non-disabled people's perception of the quality of life of people with disabilities and the way people with disabilities describe themselves. When asked, they claim levels of satisfaction commensurate with those of the general population. My experience tells me the same is true of their families. This anecdotal evidence is supported by studies showing that the families of disabled children are no more likely to be broken or dysfunctional than the families of typical children.
Children with Down syndrome are born into a world of contradictions. Improved medical care, educational resources and changing social attitudes mean that they will lead longer, healthier and more rewarding lives. At the same time, genetic research continues to develop tests that would allow for earlier detection and, it is presumed, elimination, of a fetus diagnosed with Down syndrome. As someone who strongly supports reproductive freedom, I'm dismayed by the misinformation about genetic disabilities offered to prospective parents. How can they make wise decisions when the counsel they receive is so often inaccurate or biased? The wrongheaded equation of Down syndrome with suffering certainly does nothing to lift the fog of misunderstanding.
Boteach ends with a story about a newborn with Down syndrome who required extensive medical attention. Distraught at the emotional and financial burden this child might entail, his mother wondered whether his life was worth saving. Fifteen years later, we're told, the family is united by their shared love and commitment to caring for the disabled child. They can't imagine life without him. "Even as I write this," Boteach gushes, "I'm getting emotional." He is rightly moved by this family's resilience and strength. But the source of his emotions is misguided. Instead of recognizing a story of hope, Boteach sees only hardship. A rabbi is, by definition, a teacher and a leader in his or her community. As such, Boteach is charged with responsibility to ground his opinions in more than feeble anecdotal evidence. He has the potential do good by pointing out the real suffering in the world. But it does little good to anyone, and potentially causes great harm, to imagine suffering where there is none.
Rachel Adams is the author of 'Aiming High Enough,' a memoir about raising a child with Down syndrome to be published by Yale University Press. She teaches English and American Studies at Columbia University.
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