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Therapy and sanity for ordinary parents of special kids.

DIS-ability or DIF-ability, Disorder or Difference, Gina or The Imperfection?

High Dopamine Transporter Levels Not Correlated with ADHD Contradicts use of transporter levels as diagnostic indicator; suggests need for more study November 29, 2006 These positron emission tomography (PET) scans show that patients with ADHD had lower levels of dopamine transporters in the nucleus accumbens, a part of the brain's reward center, than control subjects. Brookhaven National Laboratory, Mt. Sinai School of Medicine

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We’ve both always cringed a little bit when people refer to our daughters’ disabilities as “disorders.” (It doesn’t seem to apply to them, though it does ring true of their messy, disordered rooms). That’s why when we came across this article that proposes changing the last D in ADHD from disorder to difference, we were hooked. Some of the most creative people we know have ADHD and to think of them as having a disorder just doesn’t feel right. So if it’s OK with you, in our Imperfect world we will now refer to it as Attention Deficit Hyperactivity Difference and the term ADD as Attention Deficit Difference.  And while we’re changing that, we’d also like to change the term “disability” to “difability.” Don’t credit us for this brilliant idea; we actually got it from a wonderful woman we met in Concord, NH, who refers to her son’s learning disability in this way.

Why stop here? Gina would like to change her name. Growing up, there were never any “Gina” license plates for her bike or cool signs for her room. Patty and our brother Bob had no problem, but Gina always had the “Jane’s room” or “Jean’s room” sign. Today, any name pretty much works. Maybe she should be like our Jersey Shore favorite, The Situation, and change her name to something like The Imperfection.

What do you think? Should they change the terms disability and disorder? What other terms would you like to change?

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10 Responses to DIS-ability or DIF-ability, Disorder or Difference, Gina or The Imperfection?

  1. Debbie Stephens February 20, 2011 at 1:20 pm #

    I like the term ‘differnt’ better. Though, actually, since all people are different from one another I’d really love it if there wern’t such labels at all. Why ca’t kids in school just be grouped by kids who learn visually versus auditory etc??Kids who are left brained versus right brained? Even people who have off the charts IQs and no ‘learning’ isses are typically eccentric in some fashion. Oh, for the day when all are seen and appreciated for their strengths!

  2. Mary-Ann Hussey February 20, 2011 at 1:38 pm #

    I think it’s nice to use whatever term you like, but when everyone starts requiring people to use what THEY deem correct it gets hairy, I’ve been criticized for using the terms Aspie aspergian, autistic, I actually had a woman YELL at me angrily for saying my daughter is autistic. I also had a heck of a time trying to understand what the doctor was trying to tell me about my daughter’s new diagnosis while she was trying NOT to use the R word . I think it’s great but don’t want anyone to get upset if I forget KWIM?

  3. brian hatch February 20, 2011 at 1:49 pm #

    is it really going to matter if you change the word people are going to think what they want reguard less of a name change, mary ann’s comment is perfect example of that she has used several terms for the same thing and she gets yelled at because it wasn’t the term that person would have used

  4. RUTH KHEIR February 20, 2011 at 2:03 pm #

    LADIES I THINK IT’S A GREAT IDEA TO USE THE WORD DIFFERENT! ANDREW HAS ADHD AND I HATE THE WORD DISODER IT’S ALL OVER HIS DOCTOR’S REPORTS, PLUS I HATE THE WORD RETARDATION WHICH IS ALSO IN HIS REPORTS, I ALWAYS LOOK AT ANDREW AS DIFFERENT. ALTHOUGH THE LABELS HELPED US GET SERVICES FOR HIM. NOW THAT HIS BEEN ASKING ME ABOUT ADHD, I’VE BEEN TEACHING HIM ABOUT IT. AND I ALWAYS TELL HIM YOU ARE DIFFERENT BUT NOT LESS!!! AND HE SMILES. GREAT IDEA G/P. IT’S ALL ABOUT SPREADING AWARNESS AND BREAKING THE STIGMA.

  5. Penny Williams February 20, 2011 at 2:26 pm #

    I have referred to my son (ADHD, SPD, Written Expression Disorder, and Gifted) as “differently-abled” since the day he was diagnosed. Okay, not the day he was diagnosed because I was too busy have a complete breakdown, but since shortly thereafter when I returned to reality and hunkered down in my resolve.

    Penny
    http://aMomsViewOfADHD.com

  6. Kristen Lazuka February 20, 2011 at 2:37 pm #

    Some children are disabled. That’s all there is to it. In the cases of some Autistic kiddos and ADHD kiddos they usualy do have some talent in other areas. It all depends what one conciders the “Norm”. If you are trying to get these guys to fit in a mainsteam classroom or act in a specific social manor they are not able to. If you are talking about accepting people the way they are, making the world work for them, there would have to be some major changes in the world. Starting with the schools would be GREAT! I dont see this happening.

  7. Lianne Pierce February 20, 2011 at 2:56 pm #

    I vote for Difference. Always have.

    The part about labeling to get the help is sad but true.

    MaryAnn – what a bunch a “don’t know the boundaries” adults to yell at you (we expect it from these kids, but ??? the adults?) It was that person’s inner control freak.

    Words are sadly what we have to use and by their nature are confining. There are times that a disability is that i.e., A human that cannot walk up stairs because they are paralyzed or have a neurological disease.

    The really frustrating part is that they have tied MONEY to the different WORDS that will initiate the extra help. If it wasn’t for that, it would not be as complicated to deal with classification.

  8. Robin Walker February 20, 2011 at 2:59 pm #

    Sometimes it is hard for me to read if some of the ideas swirled up by P & G are funnies or serious. I can see the humor of this blog, yet I believe there is a side of seriousness to it too.

    The horrid “titles” the medical community have created for us or our loved ones is just discouraging most times. I can totally relate to the winces we all share when we see them on paper representing our family. What I have learned is that if we don’t call a spade a spade we are doing ourselves and our loved ones a disservice.

    We must continue to say the words aloud. We must say disorder, bipolar, schizophrenia, depression, autism, PTSD, ADHD, OCD etc aloud ~ that is our reality. By us sugar coating the words does not educate others which in turn does not lessen the fears which adds fuel to the fire of stigma.

    I believe we are the change moms and dads. I believe if we are transparent and say those often raw words in our lives, with our children, with our family and friends and schools, that we are empowering all affected with mental illness and those around them. Which in fact means the world.

    I hope that as caretakers of those with mental illness we teach that is is okay to have a disorder. The words are not going to change for the diagnosis’, I think they are pretty well written in stone for the time being. But what we can change (and I think we are seeing it a lot more ) is the stigma, which is what is the worst part of mental illness. We change that by not hiding, by saying the words that hold the power and lessening their fears.

    I know I say that a lot here and in fact I do everywhere. I think I will have it written on my gravestone because I believe it so much. It is a lesson I learned from Glenn Close when she spoke at a NAMI walk last May, it was a lesson I and my family put into practice the next day and although initially I was petrified, within moments it was as if someone took a boulder off my shoulder and my family and I could stand a little taller and not feel shamed anymore. It is a gift.

  9. Sharon February 20, 2011 at 11:25 pm #

    Sometimes, something like ADHD really IS a disability: it gets in the way of learning, socializing, etc. I agree with Robin that we have to say the words.

  10. Kym Tokley May 7, 2011 at 1:55 pm #

    This was novel. I wish I could read every post, but i have to go back to work now… But I’ll return.

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