Thursday, December 4, 2008

Labels: "Special needs" vs. "disabled" vs. ... what???


Came home from work ravenous, raided the pan of lasagna the babysitter had made the kids. There's a reason I haven't yet mentioned this blog to her!

On the train tonight, I got to talking with another mom and I told her that I had a "special-needs kid." Every single time I use that term, I flinch inside; it just sounds so...stiff. Still, it's less harsh than the reality of "disabled" and "handicapped" and less dorky than "differently-abled." On occasion I'll say "I have a child with some challenges" but that often triggers a flood of questions I don't always feel like answering (and for reasons I can't explain, to me "a child with challenges" sounds like I have a child who tends to light small fires in the living room or something).

Why isn't there a more cool way to describe our kids?! Like, um, "disabledster." OK, no, not that. Or "specialista" (though that's probably too femme for boys.) Or...got any good ideas? Which term do you tend to use, if at all?

18 comments:

  1. Great Post!

    I hate 'Special Needs' too but I hate the others even more. I guess I hate it because on top of all the other 'labels' Caleigh has, we have to add this blanket term to describe our child is different to everyone.

    When someone comes up with a word that doesn't mean something weird or strange from the normal in society I will probably use it daily and in every possible conversation there is!

    Until then special needs it is...

    Don't worry about the lasagna....it was in 'your' fridge! Yummy!

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  2. I like to call them 'my angels' or say they're a little different. I know it adds more questions to the bunch, but whomever I'm talking to gets the point that they're no worse than anyone else, they just have a few extra "somethings"

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  3. I actually haven't every mentioned it, really. Except for the one time we were going to restaraunt and they weren't going to let us bring the stroller in and I snapped and said he has special needs. (Then he took me down some stairs where there was more room-ugh some people)
    I just haven't gotten that comftorable with telling people that don't know me well. My MIL likes to talk, so I'm sure our whole church knows, but at least I don't have to say anything. Sometimes I'll just tell them he has CP but I don't really like that either. I guess I just hate how I know people will judge him without even getting to know my little angel.

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  4. When talking about people with disabilities/special needs I just try to remember to put the person first. My son is "a child with a disability" or "a child with special needs"... NOT "a DISABLED child" or "a SPECIAL NEEDS child". To me it sounds better to put the child BEFORE the disability. Just my two cents

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  5. I'm with Mel. Most often I say that my daughter has a disability, and occasionally I will say that she has "special needs." I really don't have a problem with either. It bothers me when she is referred to as "disabled" and I often correct people who say that. I just don't like it.

    I also prefer not to say that she is "in a wheelchair" unless she actually IS IN it. Instead I say she USES a wheelchair or a walker.

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  6. This is a great article about 'People First language'.
    http://ftp.disabilityisnatural.com/documents/PFL-Sh.pdf
    I liked it so much, I posted it to my Facebook page in the hope that those near and dear to me would get the hint.

    I have to say, worst of all, I hate hearing that someone 'suffers from' a disability. So negative.

    I also struggle with what to say and it often depends on the circumstances. If I don't think any details are necessary I will say 'My child has some additional needs' (I don't like the word special, not sure why...) OR if I think that being frank and more detailed is necessary then I will say 'I have a child with a disability' OR 'with cerebral palsy'. I would never call him a disabled child or a special needs child.

    PERSON FIRST all the way for me ;-).

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  7. I'm with Dianne, I too hate the term "suffers from"! I will not say it.

    Billie- I couldn't agree more. Oh, and it really bugs when I hear "confined to a wheelchair".

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  8. Hmmmmm. . . this is only recently become an issue, but I just say, "my son has cerebral palsy." I guess that's the explanation that I am the most comfortable with. I avoid the special word like the plauge because it is SO general and worked in special ed adn know that most people assume that means retarded.

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  9. I haven't had to say too much yet. I usually just say the he has cerebral palsy or that he needs a bit of extra help sometimes. It's hard to know what to say because they're all labels and I don't want my son to be labeled. Tough question with no easy answer.

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  10. I agree with the people first language and also with the struggle to find the right words. I sometimes say my son has disabilities, sometimes i say Elias has special needs (but I too struggle with the word special-- i mean don't we all have special needs?) and sometimes i say Elias has Cerebral Palsy or visual impairment, depending on the situation.

    When children ask, "What's wrong with him?" as they so often do when they see the little boy with canes, my husband often begins by saying, "He had an injury at birth..." and then he may say that his canes help him to walk or that he's still learning to do some things. This explanation seems to bridge the gap between so I've started to answer this way too instead of trying to explain about his brain working differently.

    But adults are harder to appease than kids.

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  11. oooh, i love all these comments, very thoughtful and thought provoking.

    for me, well i dislike special needs, and i even dislike disability. i prefer to say the diagnosis, and just leave it at that. i say, Avery has Down syndrome.

    but we live in a world where the language we have can be so confusing...disability fits us, so does special needs, and i accept them, if grudgingly.

    great post!

    xo

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  12. I haven't really figured out what term to use yet. I guess i'm just not comfortable with any of them yet. We're only one year post diagnosis and it still suprises me how emotional i get sometimes.

    Most of the time I tell people that Katie had a stroke or is a stroke survivor. Sometimes i tell people she has CP. I talk about the stroke alot though.

    She's only 21 months now and most people don't even notice any difference with her yet.

    I guess we'll figure out what to call it when we get there.

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  13. I have an interesting story to tell, and its funny that it happened just yesterday given that this is a subject of conversation on the loop....
    My older daughter, Camille (PDD and MR), does Special Olympics, and my younger daughter, Carissa (stroke), has a really difficult time understanding the needs of many of the athletes. Carissa had to go to a bowling tournament with on Saturday and was very upset about it. Trying to reason with her (dummy me!!), I talked about the athletes disabilities and how she could be a bit more tolerant given that she had some special needs, too. Her response was quick and intense.... "I am NOT disabled, Mom. I just had a stroke". So there is one child's perspective on the label subject.

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  14. Jennifer (Camille and Carissa's mom)December 7, 2008 at 7:04 PM

    I also wanted to comment on what Christy said. She is so right about children being easier to appease than adults, and I find that often includes us as parents. Carissa's friends are much more comfortable with her issues than their parents, and I have always found that as long as kids could ask the questions they had, they really weren't worried about any "labels".
    As parents and adults, we need to explain why our children look or act or function in a way that is different from their average developmental peers. Thankfully, we live in a semi-politically correct world now, and we have polite terms for these differences (i.e. special needs). By observation, I have also noticed that the more a parent accepts the differences of their child, the more others around do. Now I KNOW that is easier said than done. We all suffer losses. We all compare our children and wish things could be a little different. That will never go away. I am not insinuating on any level that we love our children any less, just that there is always a loss- a palpable one. My daughter is 17 and I STILL wish she would just "act her age". Some days it makes me want to crawl out of my skin. When she doesn't and we are in a store, guess what? I am SOOO grateful that I can turn to the person making the face and say, hey, she is "disabled", back off. So, so grateful for a label.
    I don't know. I tend to ramble. Just trying to add my perspective a little (ok, a LOT).

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  15. I usually say she has special needs. Unless someone asks me what's WRONG with her (like a Walmart cashier who was soooo concerned) and I usually spit "NOTHING!" I don't mind the questions. My girl looks a little different from her cranial issues, so I know that it's very obvious, even if she's just sitting in a cart (milestone!) that she's different. I'm always tempted to whip out the 5 syllable medical conditions when I get a rude tone. It also really bothers me because not only does she understand everything people say, but her older brother is now observing all of this, and doesn't realize yet that she's different. She just is. I wish everyone could just see it that way.

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  16. gak, I've been slacking on my reading!

    I've always been a big proponent of People First language. A couple of years ago I wrote a post called "My Husband the Hemorrhoid" for Blogging Against Disabilism Day, and got dinged by a woman who has autism. I learned a lot from her (although we agree to disagree on some issues).

    My son is the "decider" on who gets to know the nature of his disability. Obviously there are people who *have* to know details, such as his service providers, teachers, etc. With anyone else, it's up to him.

    If he doesn't feel like sharing with the curious, then well tough poop for them. ;-) They're not entitled to details unless he chooses to supply them.

    When it becomes age appropriate, why not ask Max what he prefers?

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  17. Attila the Mom, you are very wise.

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  18. When talking face to face with strangers, I always try to talk about what my son can do. I talk about how he's running now, and tries to keep up with his big sister, and tries his hardest to do all that she does, and she's four! He's the sweetest little boy who will give you kisses and hugs just when you need them and he is such a snuggler in the mornings. He has such a sunny disposition, it amazes me every day!

    Forget what he can't do, forget his special needs. Never tell the people who don't actually see and meet him the diagnosis, or 'special needs' stuff. They just don't need to know.


    For when people actually see him and start asking questions, that's the time you can scare them with terms like psuedoarthrosis, neurofibromatosis, plexiform, surgeries, etc., After hearing about the delay's, the special education, etc., atleast they can see and experience what a true joy he is!

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Thanks for sharing!