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Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

Monday, October 29, 2012

The R word

Lots of people are talking about the "R" word.
Retarded. When I was little it was "Retard". When my mom was little it was "Mongoloid".
Was retard and then retarded the nicer versions?

I don't "think" of anyone as retarded. But if I were too have to explain a childish or odd social behavior, about my adult kids with special needs, it does quickly get to the point. I do like "special needs". Not sure why that isn't used more. My peers do not know what special needs means in regards to actions of a person.  

By the time I was 26 (many many moons ago- 29 years!) the "new" word was "Developmental Disability". My son was 8 years old and he was expected to tell people he had a developmental disability if he tried to explain his confusion to others. I didn't even know what Developmental Disability meant, my son was new to me at age 7 1/2, I was his foster mom. I asked his Social Worker what it meant, even she couldn't explain it to me?????

I told my son he was retarded. He could say that word easily and his psychiatrist said it was from the root word Tardive- meaning slow. Slow to learn. But not unable to learn. We liked that. He liked that. It made sense to him. Until he turned 16 and the Special Ed teachers told him he could do anything he wanted to do. They said he had no "disabilities". He wanted to be a Fire man. I tried to explain that mom could not be or do anything I wanted because, we all have things we can't do. We all have abilities and well, disabilities too. He told me he wasn't stupid. I let it go. Then he got an Algebra book, and mainstreamed in classes with an aid standing by giving him simple addition papers instead of Algebra. He wanted to get rid of his aid, he wanted to be left alone in class to do what he wanted. So they loosened up and he was arrested at school for breaking the law. They didn't care. He was 19, the first special ed student in our district arrested. Because of that they moved the 18+ special ed kids out of the high school building! and made a transition program. Which gave them even less supervision and assistance. Soon he was in trouble again. :o(

It's a long story. But we won the court case after his first arrest. He was not prosecuted or found guilty. In order to win I had to find him "not competent" by testing his competency. It made me sad. But he truly did not intentionally commit a crime. The prosecution (the State of MN said I was an irate Day Care provider who'd do anything to find my son not guilty. No, I was an Adult Foster Care/Waivered Services provider who could not have a convicted felon in my home. And my son was innocent.)

Not competent....................is that worse than retarded? Something to ponder. Then I talked to an experienced psych who said people with mental disabilities had won the right to be prosecuted and get the death penalty. I told him then they might as well just kill my son, because he'd never understand why that was a hard won freedom.

At our County it's still called "the DD Unit" , for Developmental Disability. But then they've changed their name several times over the years also- from "S County Social Services" to "S County Services" and now "S County Human Services".
Hmmmmmm, they all sound the same to me.

I see my youngest boys now have "Global Delays", no more Developmental Delays. But I tell them they have Down Syndrome. Hopefully if they say they have DS, others will "get it"?? It's a special need.....right? My boys are pretty darn special- all my kids are! :o)
Thank goodness I'm smarter now, I think I know what global delays are.

But aren't all these things just words? Like sticks and stones may break my bones but words will never hurt me? We can re-name it, over and over. We can make it sound "good" like something you or I wish we had.

But are we just being silly?
I think so. But then that's my very humble opinion.

A p.s. about my then 8 year old son who is soon turning 37 in one month. Since leaving home at 22, he has been taken advantage of, hurt, broken bones, hit by a car, rode his bike into a building head first, hospitalized in psych wards, had tons of things stolen from him, given expensive electronics away, had his meds stolen to the point he had to stop the prescription, he's been taunted, teased, the butt of jokes, arrested, and humiliated, (sadly I could go on and on) all in the "S County Human Services" endeavor to treat him as a non-disabled man with their (questionable) "supports" in the community. And we can do nothing because we are not his "blood/birth" family. We adopted him. At 22 yrs old the County "took" him back by promising him he could do whatever he wanted so he contested our Guardianship. So he could then do what he wanted.
When we can't sleep at night, I'm glad that "they" can.


  1. "We can make it sound "good" like something you or I wish we had."

    I think this is very important.

    I've seen it on a number of blogs: the sentiment that someone is "better off" with down syndrome, cerebral palsy, etc. It's sad. It runs counter to the idea that an individual with special needs is valuable because that person is capable of enjoying life just like the rest of us. It's ludicrous to argue that an individual would choose significant impairment over more typical capabilities, that there are people who enjoy being ostracized and facing very real health concerns and limitations.

    Of course, this requires clarification. I have great compassion for people with special needs. I'm so glad that we have individuals with down syndrome and other differences as opposed to not having those individuals at all. But what if we could cure some or all of those special needs? I'm not talking about abortion; that's cruel, dishonest, and hopelessly prideful. I'm suggesting an alternate reality in which it is possible to remove the disability without harming the individual. If such a thing were possible, then I think it would be similarly cruel to withhold treatment.

    I realize that most people don't praise special needs with ill intent. They want what we should all be striving toward: a society in which people with special needs are valued, nurtured, and encouraged to contribute according to their individual strengths. However, embracing the disabilities is misguided at best. We should be seeking the best outcome for the individual, disabled or not.

  2. I'm not sure what you're getting at. If it's about the word, then I'll tell you why I don't use the "R" word. It's because it hurts my Aunt J's feelings. Whenever people say that it's just a medical term or that whatever we replace it with will become un-PC too, I just think back to my Aunt J. She knows she's different. She's not opposed to getting help. But the word "retarded" hurts her feelings. It's not a neutral word in our culture. It's pretty loaded. It's often used to mean something that's foolish or stupid. And she knows it.

    My dad is probably not much older than you. Like you, he had also embraced the "R" word (and he still uses it to this day). He grew up in a world where things were much more closed off and hushed. He didn't have friends over growing up because of Aunt J's differences. It wasn't something you talked about. When they had company over, she ate in the kitchen. As an adult, one of my dad's ways of atoning for and declaring independence from that way of doing things was to teach us kids that Aunt J. was "mentally retarded." We were to use the word matter-of-factly and we were never allowed to use the term to mean "stupid." Coming out of the world he and Aunt J. grew up in, using the term meant that he was embracing that Aunt J. had a medical condition and that her differences weren't something to be ashamed of. It was his way of rejecting that atmosphere of silence and exclusion that he and Aunt J. grew up in.

    And I totally appreciate that. I would never say that someone was being insensitive for having used the term back in the 1980s and early 1990s. At that time, just using a phrase at all meant acknowledging people who were covered up and hidden away in an earlier generation. (Kind of like Rose Kennedy going on TV and saying, "My daughter is mentally retarded.")

    But that doesn't meant the same context still applies. Now that people like my Aunt J. have a voice, many are using their voice to say that they find the term "retarded" hurtful. And so that's why I don't use it.

    P.S. I'd have to respectfully disagree with what the psychologist told you. I seriously doubt people with intellectual disability were ever given a free pass. In fact, it wasn't until about 10 years ago that the Supreme Court said they couldn't be executed (not the other way around). If anything, it might be the case that people with obvious disabilities (like Down Syndrome) were more likely to be institutionalized or sent to state schools as a result of problematic behavior. But I'd love to see the data showing they weren't charged with crimes before.

    1. I can't cover everything in one post r. :o)
      As I said~ this is my humble opinion.
      I do remember all of the kids with disabilities hidden or in huge institutions in our state as I grew up, your Aunt J was blessed her parents kept her. I know a Dr in her 80's who did keep their child with DS, she felt an institution was best.
      I didn't check if you have a blog. But you have a great blog post here. (((HUGS))) to you, your Dad and Aunt J.

    2. Honestly, I think what saved my Aunt J. from institutionalization was that she didn't have a visible disability like Down Syndrome. We still don't know why she is disabled, but doctors think it might have happened when she was born. My grandparents knew something was "off" from the time she was an infant, but she was their first child and so it was never really diagnosed and aggressively pursued early on like might have been the case if she had had DS. (I guess my grandma's shame worked in Aunt J.'s favor in that way.) When my parents were getting ready to start a family, they met with a geneticist who instructed them to find out if there were other people with disabilities in the family. Sadly, upon asking, my dad found out that there were other people in his extended family whom he had never known about, because they had been hidden away due to mental illness or institutionalized since childhood due to developmental disabilities. :-/

      Many hugs to you guys too! And thanks for being willing to put yourself out there and get these discussions going.

  3. I really appreciated hearing your heart on this. It is true--most of the blogs I read with kids with DS flip out at the very idea of the word Retarded, because of the terribly negative and cruel social connotations. I don't blame them. But it is sad how sometimes perfectly good words become inappropriate due to cultural re-definitions, and how we constantly re-name things to try to pretend they are not what they are. Sometimes things are perfectly good just as they are.

  4. Just re-read my comment. I probably could've opened it better than "I'm not sure what you're getting at." Rereading it, it comes across as awfully dismissive and confrontational. What I meant was that you explore more than one inter-related themes in your post. You talk about the "R" word but you also talk about issues of autonomy, etc. And what I meant was that I wasn't sure how these themes all came together, so I was just going to address the word in my comment. (Although I didn't stick to that in the postscript.)

    (Having gone back and reread it a few times, I think what you were saying was that, in your experience, the trend towards avoiding the word (or other descriptive terms) has also been linked to a trend towards not acknowledging the disability. Sorry I missed the connections earlier.)

    In that context, I still stand behind my decision not to use the "R" word, though I haven't decided yet how my feelings about the word do or don't fit into the other ideas explored in your post.

    1. LOL!! My posts,my points and my meandering writing style- are just- The Road "Down" Home. My life- the road I've walked. My experiences. My humble opinions. At 55 I like to think I have "creative license" :o)
      Maybe I'm the Grandma who just never gets to the point but (tries) to weave an entertaining life experience yarn!

  5. You might appreciate this: http://sphotos-b.xx.fbcdn.net/hphotos-ash4/317821_546608455368612_2086098669_n.jpg


    1. I love it! And it also applies to ME!! :o)

  6. I recently tried to reach you via email, but didn't hear back. Knowing how it is with so many emails coming into everyone's Inbox nowadays, I thought that maybe posting a comment would be a quicker and much better way to connect.

    I am working with a very special lady, Dr. Julia Kinder, who has an 8 year old daughter with Down syndrome. We're trying to promote A PETITION REGARDING DOWN SYNDROME and I thought you would be a great resource to help spread the word.

    PETITION - https://www.change.org/petitions/medical-school-faculty-require-complete-education-on-down-syndrome-for-3rd-year-medical-students

    We're also having all sorts of activities on her website Celebrating Down syndrome - http://www.juliakinder.com/DownSyndromeCelebration/

    We also published a national Press Release about this a few weeks ago, but we need the active Down syndrome community to get involved - http://www.prweb.com/releases/Dr-Julia-Kinder/Down-Syndrome-Celebration/prweb10028318.htm

    Please let me know if you would help by posting some of this to your interested audience: colin@juliakinder.com

    Your time and efforts are so important as we try to change the stereotypes surrounding Down syndrome - dispelling the myths - and as we try to CHANGE THE WAY IN WHICH THE MEDICAL COMMUNITY PROVIDES RESOURCES TO NEW PARENTS. We can only achieve these goals with your help!

    Thank you so much!


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