Posted by: poet kate hutchinson | March 23, 2015

Autism is not a “gift”

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.”

Respectfully submitted,

Kate Hutchinson

Ray n Mom

Ramon and me


Responses

  1. Dea Kate, I think it is an excellent letter and I hope they will print it exactly as you have written it. You are a gifted writer and you have presented the reality and the problems you are dealing with. I am sure there will many parents that will appreciate your effort to educate all of us, and especially the decision makers regarding funding for these needed programs. Love, Jo

  2. Thanks, Jo — we can all hope for a sea change in the way our communities work together in the decades to come!

  3. Well done! I will watch the Trib in the coming days/weeks. I truly hope that it is printed in full as written.

  4. Kate, Well done. My grand daughter is disabled and just 6. Her school works very hard on social skills as well as when she becomes an adult to be trained to enter the work force. She has only attended this school since November this 2014 and came to us not knowing her name, speaking or being able to interact with your peers. In just these few months she speaks much clearer, understands her pronouns, can even go bowling with peers with out conflict. I live in Delaware and whatever they are doing is working. Perhaps we as families should join together and use them as a model to bringing educations and social skills to the forefront for these soon to be productive persons so that they can have the life they deserve. I hope they print your letter and hope that we as 1 in 68 by today’s ratio start now on planning for the future of our families.

  5. Agreed, Eileen! Best wishes for your granddaughter. My son at 23 is highly social and charming, but he does not have job skills that “fit” anywhere. It’s frustrating to see him spending most of his time in front of the TV and computer, doing pretty much nothing all day.

  6. Kate, I love this post. I am a QIDP/QDDP (Case Manager) at a facility for adults with intellectual disabilities. I am trying to start a blog about my experiences, and my second post fits right in line with what you wrote to the Chicago Tribune. I don’t know how I tripped upon your blog, honestly, but I was quite happy to have found it. I would like to share my blog with you. Your writing is much more refined than mine, and I am a little looser with my language (it can be “R-rated”) but I do hope you find some value in it. This is partially a shameless (perhaps shameful) plug, but I did want you to know that I really do value and agree with what you are saying. People are so keen on the sunshine and rainbows, but so many really never seem to get the reality of what it is to love, help, work with, and know someone with special needs.

    My blog is at http://whoisyourq.blogspot.com/

  7. Thanks for your note, Q! I’m so glad to read that you agree with my comments. I will definitely check out your site, too. Best wishes!


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