What’s wrong with Wright?

On the eve of a first-ever, three-day summit in Washington D.C, Suzanne Wright, co-founder of Autism Speaks, and grandmother to an autistic child, called for a National Plan for Autism, to create a coordinated, national response to the 3 million and growing number of children and adults now diagnosed with autism (current rates are 1:50 according to the CDC).

What’s the problem with that? Don’t we disability advocates want more federal dollars going to help families who have children, teens or adults with autism?

Sure we do, but unfortunately, the pity-evoking, semi-tragic tone Wright used with her “Call to Action” has resulted in a huge cyber-backlash from adult self-advocates who have autism, and many parents as well.

Here’s an excerpt from Wright's opinion piece:

“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. …

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.”

Her relentless focus on the burdens of raising a child with a developmental disability is really scary to me—after all, if having a family member with severe special needs is such a tragedy, why not remove those kids/teens from their families and communities? Wouldn’t life be easier all the way around? That was the conventional thinking for too long in this country, resulting in such horrors as Willowbook in New York, and unfortunately is still the norm in many countries around the world.

One parent blogger, Shannon Des Roches Rosa, who also a co-founder and senior editor at  Thinking Person's Guide to Autism felt that Wright’s letter was
“ham-fisted” (strikes a great chord to a Jewish blogger) and outraged “at her using our lives to yank John Q. Public's pity chains.”

And from an adult with autism:
“We are teachers, psychologists, parents, somebody's children, researchers, scientists, artists, musicians and many, many more. There are many roles for us in the organizations which claim to represent us and work towards improving supports for us… Please remember: Nothing about us, without us.”

In an interesting historical side note, on Nov. 15th, the White House is hosting an observance of the 50th Anniversary of the Developmental Disabilities Assistance and Bill of Rights Act, signed into law by President Kennedy in 1963. Originally called “The Mental Retardation Construction and Facilities Act of 1963”; this was the first federal law to promote community-based health care and provided federal funding for such facilities.

What families and adults with autism and other developmental disabilities need isn’t pity. We need an update of that 1963 law to ensure adequate financial assistance for families, with more job opportunities and affordable housing options for adults . Overall, we need a system that is built to help, not hinder, access to needed services and support.