Why is Ohio Retarded but Connecticut Isn't?

You've probably heard of the uproar over the use of the word "retard" in the new Ben Stiller movie, Tropic Thunder. It has practically whitewashed the fact that Robert Downey Jr.'s character performs in blackface. No small feat.

As a writer, and the mother of three girls with autism, I choose my words carefully when writing about people with disabilities. Not because I have a need to be politically correct. I can be as vulgar and irreverent as Ben Stiller or even the Farrelly brothers (hang on, I have to kneel for a moment to thank God for the Farrelly brothers.) Inside this middle aged woman lives the sense of humor of a 14 year old boy. My Sirius XM radio alternates between channel 75 (Siriusly Sinatra) and Howard 100, where the Howard Stern show airs all day long.

I try to avoid using the term autistic to describe a person - except in cases where brevity is a requirement, like a headline. I dislike calling my own kids autistic. It says so much, yet tells so little about them. They have autism. But autism is not who they are.

Is the person with an IQ of 70 (the psychiatric cut off point for "mental retardation") damaged compared to his friend with an IQ of 71? I don't think so. If you want to grab one more book for end of summer reading, buy Lottery from Patricia Wood. It's about a man with a borderline IQ who wins $12,000,000 in the Lottery. We should all be as smart as main character Perry L. Crandall. OK, back on track. I'm home with the three girls and it's hard to keep my focus. I think I just put laundry in the dishwasher.

I've noticed that the nomenclature rules seem to change by disease and diagnosis. For instance, children with cancer are never called cancerous. Yet children with diabetes are diabetic. People with Down syndrome are not "Downers" (pun fully intended.) There's no rhyme or reason why a gnarled grandmother is called arthritic and yet her husband has Alzheimers. We aren't calling him Alzheimerian... yet. Speaking of which...

My friend John Robison, (Augusten Burrough's big brother and author of the memoir Look Me In The Eye) calls himself "Aspergian," preferring that name to the snake-like sound of "Aspie." Since he has Asperger's, I think he should be allowed to call himself whatever he wants. It's when others decide the word is a pejorative and use it with malice that the word morphs into something sinister.

But what about when it's a state that uses the term? Ohio still has "MRDD" which is the Department of Mental Retardation and Developmental Disability Services. Connecticut has "DDS" which is the Department of Developmental Disability Services. What does your state call its department? Surely Ohio intends no malice, and yet it appears to be painfully out of date, out of touch with the times. Or is it? Tropic Thunder may make Ohio au courant after all.

Comments

[Kim Stagliano - Huffpost Blogger]

Pat Wood wanted me to chime in on the term handicapped. She's toiling away at a writer's conference, but took time to make a point that "Handicapped" does not mean, "beggar." That gets to my point - I dont' want to define my girls by their disability. From Pat (for whom all roads seem to lead to "lottery." LOL!)

Here is the correct etiology:


http://www.snopes.com/language/offense/handicap.asp


It actually is from a lottery game in the 1600's that's intent was to make things equitable...

Often times people assume handicap refers to begging...it does not.

Pat

[OtayPanky]

PART 1

There's a lot of heartache in the human experience. Having a child (or three children!) with a serious biological problem is one of the big ones. In the best of situations, it can be an ennobling experience - but no parent-to-be would ever wish to be so "blessed".

That said, words must be found to describe the reality - however imperfect the words are. That's part of what we do as human beings - come up with words, maps and models to describe and hopefully better manage our individual and corporate experience of life.

Any word that is chosen to describe the biological problem - whether of a sub-normal IQ, or a body that doesn't move properly because of cerebral palsey or whatever - can be chosen compassionately - and it will inevitably end up carrying a sting. Stop using the phrase "mental retardation" and the phrase you choose instead will sound just as troubling over time. It comes with the territory - because the biological problem simply is what it is, no matter how compassionate our attempts to describe it.

[OtayPanky]

PART 2

More than that, the politicization and empowerment of the disabled community - which first became a societal force to be reckoned with during the '60's - came about precisely because these activitists were willing to demand that their right to live, liberty and the pursuit of happiness mandated the larger society to do something (like create wheelchair accessible passages). Acknowledging someone has a disability - and calling it by it's name rather than calling it a "different ability" - isn't a put-down, but a call for society to provide an extra measure of support to those who need it.

[kimmcr]

NY State:

OMRDD (Office of Mental Retardation and Developmental Disabilities) -- OH is not alone in this outdated name. And NY's OMRDD is under fire for his failures in investigating properly the mistreatment of children with autism...

[mbeloff]

[snip] But what about when it's a state that uses the term? Ohio still has "MRDD" which is the Department of Mental Retardation and Developmental Disability Services. Connecticut has "DDS" which is the Department of Developmental Disability Services.
Ah, but in CT DDS does NOT cover autism!! The change to DDS from DMR (Dept of Mental Retardation) only came this year. However, DDS still maintains the MR requirement (IQ under 70) for adult services. CT is one of only 3 states that does not cover all adults with developmental disabilities.
In 2006 the state launched a pilot program for 50 adults with autism (25 receiving services, 25 in a "control group") and in May 2008 the state upped the pilot to 75 particpants (woo hoo - wonder who is getting the 1/2 services ;)) and extended the pilot to June 2009. Its a shame, but some MR activists have FOUGHT this because they don't want to lose money for their population. UGH!
BTW, I am a CT resident with a 10 year old son with autism whose IQ is just above the line to receive services under the current law, although he is only semi-verbal. I have remained active in my local social service organization helping to keep it around so that they (hopefully) will service my son as an adult.

[Kim Stagliano - Huffpost Blogger]

MBeloff: Massachusetts addressed this situation a couple of years ago - that many people with autism have high IQ's (or at least higher than the MR cut off number) and so have not qualified for services, even though they may be terribly impaired. They launched an autism component to what they STILL call DMR to catch the people falling through the IQ cracks. I don't know how well it's working in Mass. You bring up a good point.

Also, that CT insurance bill for autism that passed? Not applicable if your company is self-funded. And many companies now self-fund to save money. My three girls will not benefit from that new law. It's depressing. Thanks for your comment.

[Chrisallalone]

FYI, just read tonight in a newsletter that Massachusetts is changing its nomenclature to Department of Developmental Services. This is a relief, because one obstacle to exploring their programs is that I didn't know how I would explain to my awfully smart daughter with Asperger's that she was getting help from the DMR.

[RoseRRR]

Kim,

My 43-year old "mentally retarded" sister has described herself as "handicapped in the head".

[TimKasemodel]

A freind and hero here in Minnesota is Brad Trahan, a father of a son with autism and strong advocate for the autism community nationwide. He recently sent a message that included this quote:

"Autism is NOT a disability, rather, it's a DIFFERENTABILTY! While each of our individuals with this diagnosis is unique in their own way, EVERY ONE of them has a lot to offer society-given the chance!"

I think this is the best way to look at anyone with anything we currently call a disability. Brad is the best - I ecourage all to check out his website at:

http://www.rtautismawareness.org/

[JeanneCant]

Tennessee:

Tennessee Department of Mental Health & Developmental Disabilities (TDMHDD)

[Kim Stagliano - Huffpost Blogger]

By the way, I wanted to mention why I referenced Patricia and John's books - not for the sake of shamelessly plugging my friends' books. Patricia is an expert in education. John coined the term "Aspergian." Both books offer an insightful glimpse into what is "mental retardation" and Asperger's Syndrome. Well worth the read.

KS

[Whatevah]

I think people worry too much about words and not enough about reality. The word "retarded" was chosen as a kind, caring alternative to previous labels that had morphed into insults. Already, many people are saying that "developmentally disabled" needs to go, too.

I think it would be more useful to devote more attention to finding ways to help these individuals become more integrated into a caring, supportive society.

[Kim Stagliano - Huffpost Blogger]

Hey there - are you from Boston, my hometown? I think your feelings about these words varies according to your personal situation. I'd hate to have anyone call my girls retarded, Yet, at the same time, I've laughed at the term "celebutard" when I've read it on Perez Hilton. What does that say about me? (As certain commenters race for their keyboards.)

I heard a person who is indeed a woman with an IQ below 70 say on the radio, "If you don't call us retarded, how will people know we're retarded? That's how we were made." That rather stopped me in my tracks. The autism/autistic debate is a bit different. There are people with autism who are proud to call themselves autistic. To some degree, autistic has a ring of the exotic, gifted, and unique. Retarded does not. I'm a pro-choice kind of gal on this one. For ME and my kids? I don't use the term.

Glad you commented. Thanks. KIM

[Barbara Fischkin - Huffpost Blogger]

Good going yet again Kim. You always have the right take on stuff.
Here's something else: The word "handicapped" dates back to the days when people with disabilities held out their caps to beg for coins because they had no other choice. So perhaps folks who are still using that word might want to re-think it. I recently saw the word used on a sign in Pennsylvania. Don't know if it was a local sign or a state sign.