I’m taking time out from my usual writing about writing to post a letter I sent today to the editors of the Chicago Tribune. I’ve written and re-written it multiple times over the last few days and finally just decided it was time to send it. Whether or not they print the letter is yet to be seen. It’s long, so they may want to chop it to bits. Whatever. But I figure it may get some strong reactions if it gets published in any form.
I do hope no one finds it offensive. My goal is to wake people up and cut through some of the haze about disability culture that persists in the media — primarily that children with disabilities are somehow “magical,” that they never grow up, and that they exist to teach lessons to the rest of us. UGH. Enough already. Let’s get to work making the world a better place for them — now and in the future — shall we?
Dear Tribune Editors:
In response to the featured essay from a week ago, “Finding the Gifts of Autism,” I humbly assert that it’s time we stop perpetuating the myth of the “magical disabled child.” I understand the sentiment behind it, as I am a mother of a now-adult child with autism, and I too wrote such essays and poems in the early 1990s when my son was small. In the face of such difficulty and challenges, the rare moments where either humor or clarity shine through the chaos are certainly memorable, and we take great solace and joy in them. However, let’s remember that for the remainder of the week or the year, caring for a child with a disability can be frustrating, exhausting, overwhelming, guilt-inducing, and lonely. All parenting is incredibly difficult, and disability adds another several layers of care to the daily routine, some of which require much time, added costs, and resources that are often unavailable to a family or parent. When we objectify disabled children as tools that can bring us new kinds of enlightenment, we are not doing them any favors. In fact, romanticizing our experiences with them as “gifts” presents some misconceptions that endanger the health and future of all people with disabilities.
We are now 25 years into an autism epidemic. The children have begun to grow up. And guess what? As adults, people with disabilities are no longer seen as the cute, “magical” children they once were. In reality, an adult with a disability is often feared and shunned, unable to find work, transportation, a meaningful social group, or an adequate place to live. My son may look 23, but he still functions as a seven-year-old. He may need a twice-weekly shave, but he cannot cross the street safely or make a meal for himself. And while his high level of distractibility was manageable in the Special Ed classroom, it has made him entirely unemployable as an adult. His impulsive need to walk up to strangers and begin conversations is no longer comical but downright alarming – both for the unsuspecting recipient of his friendliness and for his mother, who envisions a future full of police interventions. The boy whose mother wrote the essay published last week, who fixates on buses and imagines his own front drive is a bus stop, may eventually have a difficult time navigating the distinction between fantasy and reality – a problem shared by many adults with autism that prevents them from being independent.
Additionally, governing bodies in suburbs like mine continue to find reasons to deny permits for housing projects that would offer assistance for the developmentally disabled, claiming such a development would not be a “good fit” for the neighborhood, and caving to concerns of uneducated homeowners who perpetuate the myth that such people are “dangerous.” They worry that their own home values would decrease if such a building or development were to move in next door. In fact, there is no evidence to show that adults with developmental disabilities would pose any more danger to their neighbors than the average citizen; they often pose less. Only when more of these facilities are built and occupied successfully will that myth subside.
So let’s be honest about the facts: in twenty years, our communities will see huge increases of adults with developmental disabilities, many whose families are gone or who cannot provide care for them. Who will provide this care? And who will pay for it?
Rather than offering “gifts,” autism primarily offers some harsh realities. Its growing existence in our world poses complex problems that will soon test our capacity for compassion in new ways. If communities can discover the means and the will to embrace their disabled members and work together to fully integrate them into their neighborhoods and workplaces, then and only then will we be able to say that autism’s presence in the world has been a “gift.”