Dignity, Disability, and Achievement: We Are More Than We Can Do

By Hennessey, Ursula | The Human Life Review, Spring 2015 | Go to article overview

Dignity, Disability, and Achievement: We Are More Than We Can Do


Hennessey, Ursula, The Human Life Review


Most of us have seen YouTube videos of teens with special needs that have gone "viral," meaning within a short period of time they have attracted millions of online viewers. In one of these, a young lady with Down syndrome is voted homecoming queen. She beams in her crown, coiffed hair, and shiny dress. In another, a lumbering young man, his path cleared by teammates and opposing players alike, scores a touchdown. He spikes the ball in the end zone. In yet another, a boy swishes a three-pointer over a deliberately inattentive guard. Delirious fans pour out of the stands.

What are we to make of these videos? For some, they model Christian love at its most altruistic. Yet for others, including members of what is known as the disability community, they are considered to be "inspiration pom"-a term coined by the late motivational speaker and comedian Stella Young, who suffered from osteogenesis imperfecta, a congenital bone disease that kept her in a wheelchair for most of her life. Some of the most vocal critics are parents of children with disabilities. They don't want their child thought of as a "mascot." They believe the honoree's ignorance of the orchestrated nature of the event is humiliating and exploitative. The euphoria of the fans is "pageantry." You, for enjoying it at home on your laptop, are "abelist"-as outrageous as being racist or sexist. Worst of all, say the critics, these videos spotlight differences rather than similarities. This breaks the Golden Rule of inclusion politics.

Some advocates, tired of the popularity of "inspiration pom" and what they feel are other condescending portrayals of disabled people, push a dangerous achievement ethos instead. They hope that by focusing on abilities and accomplishments in the typical realm we will repair the patronizing misunderstandings of our culture at large. In turn, they hope this shift will soothe the misgivings of expectant parents who receive a troubling fetal diagnosis. But the disability community is doomed if it falls into the trap of making dignity something that must be earned.

Such disagreements over the public face of disability, once confined to private conversations between parents and loved ones, have broken out into the open in recent years. To the uninitiated, these battles may appear insignificant, but they are very serious indeed: Division within the disability community will do nothing to reverse the high rate of abortion among mothers with a prenatal diagnosis of fetal abnormality.

For the most part, the bickering is over language and emphasis. Should those in the disability community be referred to as "gifts" and "blessings"? Or do these terms diminish individuality? Should advocates only focus on accomplishments fairly earned, or can we safely champion the orchestrated successes we see in the videos described above? The friction over these questions is real; occasionally it turns nasty, causing rifts among those who should present a unified voice on dignity for all.

One word certain to divide is "gift." Last January, as she presented the GOP response to the State of the Union address, Rep. Cathy McMorrisRodgers (R-Wash.) called her seven-year-old son Cole "a gift from God." Cole, she recounted, was diagnosed with Down syndrome three days after birth: "The doctors told us he could have endless complications, heart defects, even early Alzheimer's. . . . They told us all the problems. But when we looked at our son, we saw only possibilities. We saw a gift from God." Cole, she added, "dances to Bruce Springsteen," "reads above grade level," and "is the best big brother in the world."1

The pushback was swift and harsh. On Reddit, a popular social-networking website, real-time users went on the attack: "I am sof****** sick of people saying children who suffer from Down syndrome are 'a gift from God,"' one of them fumed. Healthy children are a gift from God ... I say this as a person who's grown up with a sister who has Downs Syndrome [sic]: It is not a gift, it is a curse. …

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