Taboo Stories About Disability: What We’re Not Allowed to Say

Taboo Stories About Disability: What We’re Not Allowed to Say March 12, 2013

Last week’s New York Times featured a story about Joshua Miele, who at the age of four in 1973, answered the door of his Brooklyn home to a man he recognized as a neighbor. The man, for no reason other than his disordered thinking due to mental illness, threw acid into the boy’s face. A reporter who grew up in the same neighborhood at the time of the attack decided to track Miele down to see what had become of him. Miele became a scientist, and works now for an eye research institute, among other endeavors. He is married with two school-age children. The acid attack left him blind, his facial skin rough and misshapen as the result of numerous skin grafts.

Miele admits he was hesitant to do the New York Times interview.

It’s not that I don’t want to be written about,” he said. “I’d like to be as famous as the next person would, but I want to be famous for the right reasons, for the work I’ve done, and not for some stupid thing that happened to me 40 years ago.”

In that statement, I hear Miele pushing gently back against one of the prevailing cultural narratives we like to tell about people with disabilities, illness, or significant injury. They suffer, they fight back, they triumph, they become an inspiration. I hear him saying that he doesn’t really want to be an inspiration, or at least not because of his injuries. If he is an inspiration, he wants it to be because of what he has contributed, not something that happened to him.

The New York Times received many letters and emails in response to the Miele story, including one from his sister Julia Miele Rodas. Julia wrote:

….I am concerned that some readers will see Josh’s success in relatively simple terms: he was victimized; he struggled; he overcame. Obviously his life, like all lives, is more complicated than that. And it is critically important that we be open to many different kinds of stories about disability, especially those that are complex and open-ended, and especially those that people with disabilities tell themselves.

I have been paying attention lately to the many stories about living with disability to which we are not open (all of them, yes, “complex and open-ended”). The stories that make people angry. The stories that people label as damaging to the cause.

My friend and colleague Amy Julia Becker published a series of stories on her blog last month about different people’s experiences with prenatal diagnosis. She included a story by a woman who chose to terminate a pregnancy when the fetus was diagnosed with Down syndrome. For the most part, online responses to the story were gracious. (Although, as one of my friends remarked after reading the comments, it’s always interesting when someone insists “I don’t want to be judgmental,” and then continues in a way that comes across as….judgmental. Or at the very least, self-servingly sympathetic, as in “how awful that you had to do such an awful thing.”) Amy Julia told me, however, that she received some private correspondence from advocates for people with Down syndrome who disagreed with her decision to post the story. The irony, of course, is that 75 to 80 percent of women who receive a prenatal diagnosis of Down syndrome choose termination. So the most common story is, in the eyes of some advocates, the very story that should not be told.

When Amy Julia and I were talking about this incident over lunch, she mentioned also that many parents of children with Down syndrome hesitate to talk about the hard moments with their children. They are afraid that people will hear of those hard moments and conclude that life with Down syndrome is too hard, making genetic screening and termination the best choice. Admitting that they sometimes struggle to parent their child with Down syndrome and worry about their child’s future feels like a betrayal of that child and of all children with DS, a caving in to the prevailing cultural narrative. In contrast, she observed, she doesn’t hesitate to talk about the hard moments with her rambunctious son. No one is going to hear those stories and say, “See?? Little boys are so difficult. People should terminate pregnancies with little boys so they won’t have to deal with all this hard stuff.”

I have another friend whose daughter, now a teenager, has Down syndrome. When she talks to groups about her family’s story, she shares her recollections of the day her daughter was born, when the thought occurred to her, “I don’t want this baby. I don’t know how to handle this baby.” After one talk, another mother of a child with Down syndrome took her to task for telling this story instead of focusing on the positives.

When I have written that I hate my disability (but not my life), other people living with the same disorder (osteogenesis imperfecta) have responded, desperate to assure readers that not everyone feels this way about life with OI. When I wrote that, as a parent of a child who also has OI, I was heartbroken by the notion, voiced by a person with a disability, that parents who seek treatments or cures for our children are actually wishing that our children cease to exist, I was thoroughly chastised by an advocate.  He took me to task for refusing to accept an interpretation of parental motives that I did not share, for arguing that my story contradicts a story that someone else tells about parents like me.

All of these stories—of termination, of being unsure that one can handle having a child who is diagnosed with some unexpected condition, of hard moments, of hating what a disability can do to body and spirit, of parents who love our children as they are and also long for them to be healed—are, as Julia Miele Rodas so eloquently said, “complex and open-ended.” They are not morality tales. They do not have neat, happy endings. They are full of paradox and contradiction. And too often, those who tell such stories are silenced or ostracized by others concerned that these stories provide fodder for the “opposing team” in debates over disability, illness, suffering, and the promises and pitfalls of medical, reproductive, and genetic technologies.

But these stories are true, and therefore necessary. As long as we insist on only telling stories that fit neatly into either the illness or identity narratives (and not both), as long as advocates for a cause only allow stories that fit their notion of what makes a “good” story, we will not make progress in our efforts to promote the wonderful gift of human diversity and offer critical commentary on modern medical technology. As long as we insist on taking sides and refusing to hear stories that don’t fit our preconceived notions of how things should be, conversation around these pressing issues will be just another sideline skirmish in the culture wars, in which we lob conflicting versions of “the truth” at each other, refusing to admit that the truth is rarely as clear-cut or obvious as we portray.

If a primary goal of advocacy is to insist that society see people living with disabilities as fully human, let’s start by allowing people to tell true stories that bear the marks of that humanity—tension, paradox, regret, pain, and grief as well as joy, success, happiness, love and accomplishment.

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