is “special needs” a retarded term?

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The panelists introduced themselves, each sharing a small story that identified them as mothers of NICU twins, of a child with down syndrome, of a son with autism. Hearing one mother of an autistic child share a story of how she received a comment on her blog instructing her to go ahead and “drink some more mercury, so you can take care of another vegetable” made me ill. Disgusted, actually, with the capacity some people have to be so cruel. Another mother confided that only a few months ago she gave birth to a little girl, and the nurse handed her over with a “congratulations, it’s a girl, and you know she has down syndrome, right?” Before hearing this, the mother was told she was having a healthy baby girl. She had all the tests, tested negative for abnormalities, and then she admitted to the BlogHer room, “Well, I just feel horrible. I never celebrated her birth, and I never expected…” Everyone in the room nodded, understanding.

It was heavy. It was real. It made me remember, and it made me cry. I still wonder how much of it is my fault.

When our doctor told us he’d just performed emergency brain surgery on our son, that there was pressure in his head that would’ve killed our sweet bean had it not been relieved immediately, I didn’t ask the doctor, "Is he going to be a mentally handi-capable child?" I asked, "Is he going to be retarded?"

He answered, "I don’t know." I was sick and hated that no one could give me a guarantee. I’ll always hate the unknown, despite the knowledge that there are many blessings hidden in it.

Months later, I referred to my son’s pediatric walker as a "’tard cart." Soon the emails filed in. "Given your large readership, you have a responsibility. You shouldn’t write such things." "As a mother of a child with a disability, you should know better!"

I do know better. It’s not that I’m insensitive or that I don’t have access to a medical dictionary or thesaurus. I know there are appropriate words, but the proper PC-friendly terms both irritate and scare the shit out of me. They sound horribly serious and quiet, as if they’re coming from the sterile mouth of an uptight math teacher who believes those who indulge in any position other than missionary should spend their lives repenting. On their knees. She won’t say "sodomy," "head," or "blowjob," but will allow "oral copulation" when speaking of a list of deeds invented by Lucifer. "Mentally Challenged" is a phrase polite women in long denim skirts use after clearing their throats. The kind of women who wear knee-highs and memorize poems. If there’s any kind of movement to be made in an effort to make disabilities sound far less terrifying and stigmatized, it’s got to be reclaiming "derogatory" terms and using them lovingly. I have no doubt, one day, people will refer to the word "disability" as derogatory, given that its definition includes "disadvantage."

There’s a manifold of innocuous words that, given their context, become downright caustic. "That’s so gay," for instance, seems harmless enough, except when you stop to consider that it’s a subtle way of inferring that things that are lame (also problematic), pathetic, or imbecilic are in essence "gay." It’s a phrase I hope I haven’t repeated since I crimped my hair and pulled it into a banana clip, but I couldn’t promise as much. So, what did my use of the phrase "tard cart" possibly say about any of my latent feelings about mental and physical handicaps? I’d deleted it as soon as I realized what I’d written had hurt people, but after giving it more thought, I wonder what’s so bad about it? I hoped that bringing it up to a room full of women at the BlogHer ’08 "Blogging About Our Children with Special Needs" panel might further my understanding.

When can you use a derogatory term (to take the sting out of it, or simply to be able to discuss it at all)? I believed that taking ownership of my situation and the words that were tied to it was empowering. Did others think so? Hopefully, I’d find out.

I raised my hand and began with this: sometimes it’s so frightening, and you feel so alone, but you have to get it out, and our fears are not always expressed in the most politically correct way, but is it okay if it’s meant with love? I mean, is it okay to use humor, of whatever brand, to get you through it, so you can discuss it openly and, most importantly, assault a bit of the negativity that marks the lives of disabled children? In other words, when it’s yours to experience, can’t you do with it what you’d like?

Except I didn’t phrase it just that way. I rambled and wasn’t sure any of it made sense, but at least I was putting it out there. I’ve certainly heard from readers who’ve suggested I stand back from the situation and realize that words can hurt, and as a writer, as an advocate for my child, it’s my responsibility to make a statement, to be politically correct. It’s my job to play nice, and "why when you can pick something nice and positive would you use such an ugly word?" But I wanted to hear from a room full of people who also might have felt that platitudes were derogatory, not the terms themselves. I hate being patronized and pitied. I hated the "tsk" sound I heard on the other end of a phone conversation. I hated "I’m so sorry for what you’re going through." I didn’t want to be handled with kid gloves or polite sensitive terms.

"Without question," I admitted, "I tend to make fun of things that scare me. When Lucas’s neurosurgeon suggested we take the dreamy little marksman across the hall to be assessed for plagiocephaly (aka flat head syndrome), which was the least of our worries, I turned to Phil and began to laugh. ‘We’re going to have a fucking helmut kid.’ Who loves that little tater tot more than his own mother? Why can’t I call him whatever the hell I want when everyone knows it’s said with love? And people do know that.

Win, lose, or walker, they’re mine, and I love my kids unconditionally. It’s why I can joke, not mean spirited but fun. The humor is never from a hurtful place, and the words are always said affectionately. Isn’t that enough? Otherwise don’t we run the risk of alienating people who are too terrified of insulting people by voicing their real concerns?" Except I didn’t run on nearly that long.

HERE’S WHAT I WAS ABLE TO DIGEST OF THE RESPONSE: It’s rude, or at the very least, incredibly lazy of you not to make the effort to phrase things in a polite, sensitive, “right” way, even if the phrasing is happening in your own world, among your own friends or readers, on your own blog. It’s the least you can do if we hope to make changes, strides, steps forward.

"Is there a ‘wrong’ language in telling our own trying stories," I asked, "when really, we just need to get it out, need to tell it in our own voice, with our own words, to deal in our own way? Should we not bother if those words aren’t politically correct?"

“Sorry, keep it to yourself,” I was told in several more indirect words than that. Actually, I was instructed, “Tell a close girlfriend, say it the way you need to, but don’t put it on a blog because it perpetuates the negative cycle of disabilities.”

"You’re bringing attention to the disability as a negative when you use insensitive words, even if humor is your coping mechanism. Talk to a girlfriend, frankly, about it, but don’t publish those thoughts because it does more harm than good, without positive words to speak about disabilities.”

Perhaps more accurately, it was documented on another blog as this: Using humor and language when discussing child’s disability: Language frames how we think about things – if you accept a language that puts disabilities first and foremost in the minds of people, that’s not positive for anyone.  So many loaded words in our language, but important not to diminish our children when we speak about them.  There are many repercussions when using certain language and types of humor, maybe more than what one person really can deal with.

I thanked them for their opinions and sat quietly taking in their response. Afterward, several woman from the audience approached me, agreeing that people can be too uptight, and maybe it’s time we speak honestly about how we feel and with what we’re dealing without the pleasantries. There’s obviously an appropriate lexicon when it comes to speaking about disabilities. A socially- politically-sensitive way, where “mentally retarded” is, at the very least, replaced with “mentally challenged.” No one wants to insult anyone, especially with such heightened sensitivities, with a history implied, with a right way of approaching all that’s seen as going very wrong. As we all know, though, humor can be one of the best medicines.

I make fun of myself. When I was shipped off to fat camp, I didn’t call it "fitness weeks." I don’t think commenting on our perceived downfalls with humor and universally frowned upon words is a failure; it’s a strength. It allows us to reverse their power and reclaim it. I tease my husband, my close friends, and my kids, always with love and never ever in a way that would really hurt. They’re kids. I would always treat them like kids. Funny, quirky kids.  Dwarves who whistle while I work. But until Disney, Pixar, Dreamworks, or Warner Brothers can create lovable cartoon characters depicting disabilities with an updated group of dwarves named Quirky, Digger, Shout Out, Fall Down, Sir Limp A Lot, Stutter, and Banger, it’s up to me to do my part in breaking down a few walls. Or at the very least, continuing to express myself as if no one else is reading.

51 Responses to “is “special needs” a retarded term?”

  1. Eleanor's Trousers Says:

    I think your children will be very lucky to have a mother who isn't afraid to give it to them straight. Sometimes all the pretty words in the world won't make the unpretty things go away. But if we speak the truth, honestly, at least the words can't get more power than they deserve.

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  2. kellye Says:

    I have a hard time deciding where I stand on this issue.

    On one hand, I see where you're coming from and agree that you should be able to put your hopes, dreams, and fears into your own words. Whatever they may be. Like you, I tend to deal with my pain and hurts with humor as well. Earlier this year my dad had a stroke that almost ended his life while eating breakfast at a Burger King. Now every time we pass a Burger King we talk about eating "stroke burgers." It's not actually funny, and it's probably really disgusting to most people, but to us it's our way to help cope with a heartbreaking situation.

    On the other hand though, we live in a world where people do take offense to our words and phrases. And although you deal with your pain and fears by using humor, to other people going through the same issues, this appears offensive.

    So where do you draw the line? I guess my opinion is that you need to do whatever gets you through the tough times. Because no matter what you do, politically correct or not, there will always be someone who finds fault with it.

    FROM SK: Thanks for this. Phil is at a very high risk of stroke, and we constantly joke about it: subject for another post.

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  3. Colleen Says:

    Boy, does this topic strike a chord with me. Thing is, I think those of us who are going through the ordeal seem to be given a pass to use what is considered 'derogatory'. I suppose it's sort of that belonging-to-the-tribe mentality. I believe the proper term is called 'gallows humor'. Really, if you didn't laugh, you'd cry. When I was pregnant w/ my twins, we found out my son would be born with a bilateral cleft lip and palate… at the end, the perinatologist told us he didn't hold out much hope for his having a large section of his face. Holy Crap! We'd only just found out a few weeks before that his cleft didn't mean bigger and more deadly problems, like trisomy 13 or 18. Just like Humpty Dumpty, all the king's horses and all the king's men won't be able to put him back together again. Well, yes they will, but it will always be there. So I joke… I joked about his first course of treatments, I joke about speech therapy, I joke about living in denial, I joke about the surgeries and scary things he's going to have to go through. I joke about things that I suppose I shouldn't and it makes things not seem so dire. Do I REALLY think it's funny?? No, but it comes down to this… as a parent(s) of a child whose journey isn't, let's say, typical, we are blessed/burdened/entrusted with the enormous task of making it ok for everyone else. To let others know that it's ok, we're ok, our kids are ok, questions are ok, to try to convey it's really all ok if their journey isn't the same as ours. That it's not just sad and bad news and doctors and a life of sadness. That by saying something in a shocking way, it will somehow let others know we have a grip, it's our normal and we want to hear about their normal. Life happens and there isn't a single one of us getting out of this alive… or scar free. My motto? When life hands you lemons, pass the tequila and salt.
    (And after a few of those, I start to get raunchy)

    FROM SK: My life's motto? Lemons are meant for vodka-spiked lemonade, and you're exactly right. I don't think there's anything wrong with "gallows humor" if it gets you through it. Taye Diggs, recently spoke about the n-word, and in particular about the debate between Whoopi and Elizabeth. “They can have an opinion, but… don’t take a word that you created and called me for many, many years, and then me being in my position, have the strength to change what it means in my own culture,” he explained. “Don’t try to take it back now. Now it’s ours. Leave it alone.” I'm not saying "retard" is anywhere near as offensive as the n-word, but there is something to reclaiming a word and making it your own, without apology.

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  4. Johanna Says:

    Hi Stephanie,
    I think you're right…there are too many uptight people in this world. And all the political-correctness kinda pisses me off especially when people who know nothing about what I've been through growing up tell me I can't use certain terms to identify myself with. Just annoying. I would equate that with people who have never had a family member or close friend with a disability telling you that you can't use the word 'retarded'.

    Anyway, what I did find a bit shocking was the comment you made to Phil about maybe ending up with a "helmut kid". Only because the way you described it made it sound like something maybe your father or mother would have said of you growing up. That may not make much sense, I'm not as gifted with words as you. But what I'm trying to get at is that in that moment you sounded a bit like your parents. You said at your Moose reading and the message was clear in the book that you don't want to mess your kids up the way your parents messed you up when it came to food (your weakness). But perhaps you are subconsciously doing it with Lucas with the "jokes" you make about his weakness (if it can be called that). Just food for thought.

    Basically I think that you can use whatever terms you want to use to help you cope and you can definitely use humor to help as well, just make sure you don't hurt your kids along the way. They may just see you the same way you saw your dad when he laughed at your then-new nickname.

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  5. Shash Says:

    I so wanted to be at this breakout session, and I wish I had been. (I didn't get to go this year) I really wanted to hear what people had to say about this very issue, because I too struggle with what to say and how to say it so I don't offend.

    I agree with you 110% and while we are letting people see what it is like to live with and love children with special needs; we also need to be ourselves. Warts and all. Because our acceptance begats others acceptance in the long run. Even if it isn't always PC.

    /rant

    Shash

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  6. Barbara E. Says:

    I live in PCville, and the terms "disabled," "handicapped" and even "physically challenged" have been out of style hereabouts for years. We have to say "differently abled" and refer to special ed aides and equipment as "adaptive something-or-other." There may or may not be a rule on the books in the school system about permitted usages. I'm not certain because if I pay too close attention to what the school board is up to, I feel the need to repeatedly bang my head against a hard surface. You know, like a 'tard.

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  7. Amy Says:

    I get what you are saying. I don't find it offensive since I too use humor to deal with tough situations. We all have different coping mechanisms but for someone to take offense to it is tiring. My parents attend a church that houses a school for adults with Down Syndrome. They have found from meeting the parents that humor is their saving grace especially when dealing with their children who look like adults but act like children. They love them and it shows but taking a moment to laugh when needed. Great post.

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  8. Sarah Says:

    I was a partner of a quadrapligic man for a while, and I was suprised taht he called himself, and his compatriots, gimps, cripples etc. When I was part of the community, I had license to ask if we got the gimp discount, but after we broke up, I realized I didn't have the credibility of being with a disabled person any longer, so I stopped throwing that kind of terminology around. Then I married a jew, and let me tell you (but you are from LI, so you know), there is probably no other group that makes jokes at their own expense the ways the jews do, but again, when I'm not with him, referring to his college era 'Jewfro' got me a talking to by one jew, and defended by another. All that is to say, what? I guess that when you are a mother of a child who needs special stuff (surgury, a walker) you have the credibility. You aren't writing legislation, you are blowing off steam.

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  9. Bill Says:

    You have to be able to make fun of it, even if it's a gruesome fun, to cope with it.

    I have a niece who is autistic, and her parents have always had fun with it at some level…t-shirts that say "my child rides the short bus", for example. I had them make one that says "my niece rides the short bus".

    The alternative is to sit around and cry all the time.

    And you are not, generally, an offensive person. We need to stop looking at language as offensive, and start looking at the intent. Calling your friend a derogatory term in a teasing way is just that…as long as you're both in on the joke, it's not offensive…it's playful.

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  10. Colleen Says:

    Sorry to hijack your comment section, but am I really pathetic if I came back to say, "Oh, BTW, after my boy twin got through with his first cleft surgery, his sister actually DID have to wear a helmet"? Oh… and don't think for a minute I didn't 'joke', I HAD to!!! She got it off about 2 weeks after her twin's 2nd surgery to repair his palate. One with a helmet, one with a horrifically swollen face. That first year was incredible. I often said I had one that looked like Hanibal Lecter (when he had his NAM in for the first 5 months) and then I had helmet-head. How's this for un-pc… we called her stinky-head. Seriously, had to spray that thing w/ Febreze! Hmmm… even funnier, to me, was the thought that if I didn't get my daughter a helmet to fix her way, way, WAY flat head, boys would be making jokes about resting beer cans on her head when she was older… if you know what I mean.

    Kellye,
    My dad had a debilitating stroke last year too. On the day my sister had her daughter so my mother wasn't home to help him. He too, should have died and he didn't. He too has a wicked sense of humor and I suppose that's where I get it and I can tell you how much my dad and I have laughed and laughed and laughed over this past year of his struggles. All over things one shouln't laugh at… you know, like wiping your father's butt because he can't, etc, etc, Through all these things with my children, my dad, I've learned that love really does conquer all… not a romantic love… just pure, unconditional, healing love. And lots of laughing.

    Oh, and Stephanie, do you have exact measurements or directions for vodka spiked lemonade?? Sounds far classier than shooting tequila. I'm having few girlfriends over next Friday with all our kids to lounge by my pool and I can only assume we will be as un-pc as our imaginations will allow, (they also have children with 'stuff'), and that sounds like it would be yummy. I'm supposing the lemonade isn't crystal light?

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  11. Rebecca Raymond Says:

    I think laughter can be some of the best medicine. It can help if you make light of a serious situation (or subject). I say have fun any way you can. Laugh with the ones you love and you will have a truly rich life.

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  12. Kari Says:

    I'm with you on this one. When in public I do try to be politically correct, but when it comes to me and mine I make no apologies.

    There was a long period a not even two years ago when I was immobile due to a back injury. The only thing I could do to cheer myself up was make fun of myself. I called myself every name in the book, making fun of myself because my mother had to come to my house just to help me get pants over my legs.

    I wouldn't condone saying those things to the actually child (like Colleen mentioned), but I hardly think that is what you were getting at either.

    Usually when people are offended by something it's not because they are concerned about it bothering the disabled person, but more so because it bothers themselves.

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  13. julia Says:

    I don't necessarily disagree with this post – I'm not sure yet how I feel about it, so I guess I'm sort of playing devil's advocate with this question: you've written several times about your father thinking it was funny when boys called you "Moose" when you were young. Just the other day you posted a video (one of several) where you talk about the nickname's impact on you as a child. How does that square with this post?

    FROM SK: Ever see the movie Fried Green Tomatoes? Idgie nicknames Ruth's son "Stump" figuring everyone else will call him that, so they (the people who love him) might as well be the first, takes the sting out of something over which you have absolutely no control.

    My father never called me Moose as a sweet loving nickname. When I came to him, crying hysterically, begging to go to a new school, finally working up the courage to tell him the kids called me Moose, he laughed and said I should lose weight… that it was my fault people were cruel to me. Had he called me Chubbs, I promise you, as loving as he is, it wouldn't have been said in the spirit of love and playfulness. He'd have said it, called me names (which he never did) with the intention of somehow thinking that kind of ridiculing would have motivated me to change.

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  14. squid rosenberg Says:

    Hello Stephanie,

    I was the panelist who approached you after the discussion. (deleted links, url below)

    There are two issues here. One is whether you get to use these terms in the first place, the "Asshole" question I posed to you after the panel. My brother has proven on many occasions that he *is* an asshole. Is your son mentally retarded? If he is, I can see why you would feel ownership over the term 'Tard Cart.' I still would never use it, and it gives me the heebie-jeebies. My opinion.

    The second is use of humor, and I agree with you — it's critical for processing our daily lives both IRL and online. But your large readership does make you a role model whether you want to be one or not.

    And just because we disagree on this topic doesn't mean we don't get you and won't have your back on other issues. Remember that you were asking for an opinion.

    Sounds like what we need is what everyone on the panel wished we had, a longer discussion. Sigh. Maybe next year.

    Finally, it appears I misunderstood your story. I thought you were worried that your child would have special needs but that he didn't. Hence my "tourist" comment. Apologies on that one. If he's got the walker, you've got the pass.

    FROM SK: True, knowing that I have a large readership makes me a role model, whether I like it or not. I choose to be a role model by sticking to what I began here on this blog. I believe in compassion, certainly, and I believe in writing as honestly as I can, keeping true to what I'd write in a private diary. That's never going to change… and that's the kind of behavior I hope people will model… to be true to themselves and keep their writing and actions true to who they are at that moment. That's the standard to which I hold myself. Am I being authentic? Is this how I'd say it if it was just me? I write everything I do pretending no one will ever read it, then I hit publish because the minute I make things polite, edit, and delete is the minute my message stops being authentic. And you're right, I do wish it was a longer discussion. I think each of us handles things differently, and like you, whether I agree or not with how others handle things, I'll certainly always be respectful about it. There are, after all, 31 flavors for a reason.

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  15. jessica Says:

    Having only read the first part of this post…

    I dated a guy in high school who had this amazing family. He was an amazing guy — still is, we're still friends. His younger brother had Downs and they referred to him as Retarded or MEntally Retarded. They NEVER USED THE WORD RETARDED in any other way — and I learned that habit from them. Before then (I was only 16), it was "retard" or "retarded" all the time as an insult or a joke, but they taught me not to do that and I still don't. In a way, they "took back" the word and made it clinical, as a way to describe their loved ones disability in a way that didn't require a ton of PC bullshit explanation.

    I think sometimes we all make jokes ("tard card") as a way to have a dark humor about a situation; to bring it some levity. I don't think calling a person retarded is an offensive term when you are describing an actual condition, UNLESS you also use it in a cavalier way — ie "her dress is retarded."

    Just a simple thought. But their attitude about it changed my vocabulary, and at age almost-31, I still don't use that word in any other sense.

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  16. alice Says:

    you know how you had posted earlier about how people always think that they have far more significance in the world than they actually do? i feel like these women, the ones who were foreseeing these huge ramifications from using humor/possibility offensive terms on their blogs, have to realize that the terms they choose to use (or not) really don't effect the world's view of people with disabilities. If it's the government, or a medical textbooks, or a school's curriculum, sure, that's influential, we want to be careful there. But someone's blog post, far less influential. While everyone at this gathering probably, by virtue of being members of the community, think that their writing is hugely influential, it just isn't in the specific sense of "influencing what the world thinks of those with disabilities"

    So, with that said, I think it comes down to a balancing test….the marginal effect on "public perception" that a blog post may have versus whatever healing/restorative effect it may have on you to be given a few inches in order to use humor to deal with your stress. This doesn't give every asshole to be…an asshole – it just doesn't marginalize your feelings and needs outright because they're given their fair weight.

    You're blogging for yourself; it isn't a public service and shouldn't be judged as such.

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  17. amy Says:

    I have worked with individuals with special needs since before I finished high school, during university, and am now 42. I hate the term 'retarded' with a passion. That was the term used so freely in my youth for those who were 'slower' than the peer group and usually nastily said.

    The latest PC correct term (as far as I know, changes fast) is developmentally disabled. Whatever. Love working with those that need special help, encouragement and love. I love the innocence they usually have.. and their need to live normal lives and my ability to help them achieve that. Because we all deserve to get out there and LIVE dammit!

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  18. Lori Young Says:

    Maybe context is important. I say things to people who actually know me that I KNOW would be hugely offensive to other people. It doesn't matter much to me but then I'm not in the public eye either. I have an online journal but my readership is small and have been online friends for years.

    Still. I'm an RN and I've found that the people who seemed to deal best with whatever illness or disability or catastrophe they had going on were the ones who had a sense of humor about it.

    Story time!

    My best friend Ellie is almost 70, 20 years older than I am. She had this weird skin thing on her leg biopsied. Today on the phone she said she was holding off on buying the expensive prescription sunglasses she wants until she knows if the leg thing is serious.

    E- I don't want to buy the sunglasses if I'm just going to get sick and spend $$$ on treatment only to die.

    L – Well if you're going to die anyway you might as well enjoy the time you have left by being able to see AND look fabulous while you're in the sun. And besides, maybe they'll just amputate the bad leg and then we'll get you a wooden peg leg and an eye patch and you can do the whole pirate look. Then you'll only need 1/2 a sunglass. We'll get you a sunglass monacle! Half as expensive as those sunglasses you won't go buy yourself.

    E – Yes! This makes total sense to me. Can I get pants half off since I'll only need one leg?

    Ellie will probably outlive me.

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  19. Lea Hernandez Says:

    I hate it when I don't even know whether to say, "My son's autistic" or "MY son's an autistic *person*." I worry about offending people who don't even have a damn special needs kid.

    I couldn't approach it with your level of humor, but we've been known to dress him (before he cared) in shirts that said, "Keep watching, I might do a trick."

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  20. Kat Says:

    I don't have a problem with people using un-PC terms at all. Most of the time, you can see very easily what their intentions are. The only thing I would think about, is that yes at this point it is "your situation" to deal with and label as you like, but eventually it will shift to mainly being your son's situation. He might read some of these posts, assuming they're still around. And, even knowing 100% that they were meant with love and levity, it might very well still hurt to see the word. To know that someone thinks of you just in that word, no matter in what context. Or maybe he'll have a total sense of humor about it. Who knows.

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  21. Andrea Says:

    My son was dx with developmental delays by the time he was 18 months. Preschool intelligence tests showed him to be moderately retarded. I was told to put away the preschool toys and give him baby toys because that was the level he was at. He is now seven and his IQ tests show him to be gifted. This diagnostic change was not because of groundbreaking therapy but because it took that long for his brain to show what its actual strengths and weaknesses were. I never used the word 'retarded' because it is such a broad label and sets the bar so low – the general public hears 'retarded' and they think the person is sub-human. In reality even people with mental retardation have gifts of their own that deserve to be celebrated.

    I shudder to think the damage that would have been done if I had embraced the word 'retarded' and used it to describe my child to my family, friends, therapists, etc. I am sure it would have limited their expectations of him and probably hindered his progress. It certainly wouldn't have encouraged them to respect him for his own unique gifts and see him as a person first, and a person with disabilities second.

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  22. Andrea Says:

    My son was dx with developmental delays by the time he was 18 months. Preschool intelligence tests showed him to be moderately retarded. I was told to put away the preschool toys and give him baby toys because that was the level he was at. He is now seven and his IQ tests show him to be gifted. This diagnostic change was not because of groundbreaking therapy but because it took that long for his brain to show what its actual strengths and weaknesses were. I never used the word 'retarded' because it is such a broad label and sets the bar so low – the general public hears 'retarded' and they think the person is sub-human. In reality even people with mental retardation have gifts of their own that deserve to be celebrated.

    I shudder to think the damage that would have been done if I had embraced the word 'retarded' and used it to describe my child to my family, friends, therapists, etc. I am sure it would have limited their expectations of him and probably hindered his progress. It certainly wouldn't have encouraged them to respect him for his own unique gifts and see him as a person first, and a person with disabilities second.

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  23. Timbo Says:

    It's your blog. Write what you want. If people don't like it, they can stop reading.
    Don't you Americans have some kind of Amendment about free speech ?

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  24. SwissBarb Says:

    I don't understand that some words "scare the shit out of you", but others that you use to talk about sensitive issues should not offend people, or else they are uptight?

    I work with institutions tending to the needs of disabled people, from their birth to their old age, and if I ever heard a director or educator refer to them as "tards", I would be shocked. I'm sure it's done behind closed doors or after a couple of drinks. But in public, it's a big no-no.

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  25. Monda Says:

    Audience is everything. I teach this every single day in the college classroom, and I believe it extends to any form of communication. Know your audience.

    That said, you don't strike me as a gal who cow-tows to a politically correct bunch of readers. That's NOT your audience, and don't let them remold you into a voice you don't own.

    There are enough folks out here who articulate like they were walking through minefields. It makes for some inauthentic reading and I find it tiresome.

    Now, pour yourself a drink, peruse your blog stats, and tell the rest of them to fuck off.

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  26. Deborah Says:

    As the mother to 3 children with significant disabilities, what I want more than correct language is understanding. Not pity – not the tsk sound – not the "so sorry". Try to understand what my life is like day in and day out, and then perhaps the reason the words are so hurtful will make more sense.

    Check out my post that goes up at 4pm eastern time today on the 5 Minutes For Special Needs site. It is titled "The Last To Blink", and will give anyone who takes the time to read it, a very real look into my life and the life of all parents of children with disabilities.

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  27. carol Says:

    Hear, hear Monda

    So sick and tired of all this PC crap.
    What makes "visually impaired" different to "deaf"? Does it make it less DEAF?

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  28. jenn Says:

    I think you have the right to use whatever words you want to describe your son. People are entitled to object to those words or laugh along with with you. I think it comes down to sense of humor — yours and your readers'. Some will think it's funny and others won't. I have a family member who is mentally retarded. I see absolutely nothing wrong with using those words to describe him — however, like Jessica above — I would never use them in any other context. And I would certainly never refer to him with some cutesy/derogatory nickname such as "tard" or "short-busser" as I find that disrespectful. However, to each his own, and I mean that sincerely. I really don't judge you for using those words with your FAMILY, FRIENDS, and DOCTOR, and I do accept your explanation of why you use them – the stress, the fear etc.

    You ask "Why can't I call him whatever the hell I want when everyone knows it's said with love? And people do know that.
    Win, lose, or walker, they're mine, and I love my kids unconditionally. It's why I can joke, not mean spirited but fun. The humor is never from a hurtful place, and the words are always said affectionately."

    I hope that your son grows up to have a sense of humor just like yours. Then the words you choose to use to describe him — and as importantly — the incredibly public venue in which you use them, won't sting. Hopefully he'll laugh right along with your jokes and not internalize that he's different, and somehow less than. Hopefully he'll understand the difference between "laughing with" and "laughing at". However, that is a subtle distinction that children often do not grasp, and that adults sometime get wrong, as the experiences you describe with your father demonstrate.

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  29. Amanda Lawrence Says:

    Personally I believe everyone deals differently and honestly recognizing that the way you deal is humor is more healthy that the person who may find themselves thinking negative thoughts about their children special needs or not and immediately repress those thoughts and then continue to punish themselves for it. Its important to have a way to cope in every situation. Children, in laws, fat camp, breakups, death etc… I think what is ultimately important is allowing yourself to feel it, deal with it and not punishing yourself for those feelings… Far too many people live that way. For example when my great grandmother died it was my first experience with death… I had no clue how to accept and deal with the loss. So I felt through my camera… Yes I took photos of everything. I've had people tell me how morbid that is, or that I was not really dealing with the loss but hiding behind the camera. I disagree. To me that is what is important. Coping mechanisms can't always be learned. Do what works. Like you said they are your children and humor involving them isn't made at their expense.

    And as far as Disney goes… I think finding nemo was Disney's attempt at a disability. That small fin was a huge struggle for that little fish!

    For your sake, and mine, keep writing what is real. You are an inspiration to me. So for that… Thank you for your honesty.

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  30. Jennifer Says:

    We live in a world where people are waiting to be offended. There are people who are deeply disappointed when a day goes by that they aren't offended.

    I hate the PC thuggery that is, in essence, censoring rhetoric and crippling discussions. By changing the wording, it doesn't make the condition any less serious or any more serious. All it does is hamper any sort of intelligent discussion that may go on. And such censorship cultivates the "tsk tsk" pity culture that many of you mentioned disliking.

    Context is everything. People can say marginally offensive things in the proper context and not have them be offensive. It is about sensitivity. I have had students in my classes who didn't want to be called African American because that to them was someone else's description. Sometimes the PC forced vernacular causes far more damage.

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  31. Mono Says:

    Stephanie, thanks for bringing up this important topic. The comments have been extremely interesting. I have a sister who is retarded and we never used the word around her when she was growing up. My parents decided to try and "integrate" her in non-special-ed classes for as long as possible. She's now finished with "college", she attended both "regular" and special-ed classes but could certainly never graduate as she is at about a 4th-grade level in reading and math. Interestingly, she still doesn't associate with the term retarded or disabled, though she clearly is. Her situation is such that you can't tell that she is disabled by just looking at her, but once she speaks, it's obvious. What I'm getting at is that nobody will be able to tell what Lucas has gone through by just looking at him. And he has the capacity to not be classified as disabled. I wonder if by using these so-called-controversial words he is going to grow up thinking that he is different than all the other kids. And, I'm not saying that it's such a bad thing to be different-I'm just saying that growing up and adolescence is hard enough as it is. I know times have changed drastically in the 23 years since my sister was born-maybe I'm just late coming to a new era of acceptance?

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  32. Barbara E. Says:

    "What makes "visually impaired" different to "deaf"?"

    A lot. Just ask a deaf person. Really, really loudly. Or hold up a sign. It's not like they're blind, right?

    Sorry. Bad hair days tend to bring on the snark.

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  33. kd Says:

    in response to your response on a comment, how can you be 100% sure your kids won't take your un-pc nicknames for them the way you are "sure" your dad would have meant chubbs if he had called you that? how can you know for sure they won't take it personally on some level and think you want them to change? even if you think teasing is only in the spirit of love and play, words can still make a deeper impact and still hurt, even if you say it lovingly and follow it with a big hug. so just be careful.

    FROM SK: None of us can know anything 100%. Especially when it comes to how others might take things, despite our best intentions. And for the record, I personally never intended to give my children nicknames other than what I call them now… Kind Sir and Little Miss.

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  34. Robyn K Says:

    OMG, Stephanie, I'm a long time reader but somehow must have missed the archived post you link to in this post titled FAULT. That was amazing. I love the way you always push the line… in a way that never makes me roll my eyes. You're just so real, so honest, and you're an incredible role model. It's because of you that I've started to live my own life and not the one I know others around me want me to live. Thank you for kicking ass.

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  35. Susan Says:

    My friend's comment after I shared this post with her:

    "Rob from darn-tootin.com gets a lot of crap for referring to his daughter as broken — his reasoning is something that is broken can perhaps be fixed."

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  36. mcatgirl Says:

    This is an interesting post. One of my best friends has three children that have different types of special needs. I have learned a lot about her challenges and it changed my perspective on things. When her youngest was born with Down Syndrome, it just pained me to hear people use the word "retarded" as a slang term for stupid. It made me think of her baby and it made me sad. I am not really sure how I feel on the issue.

    I think the original intent of PC speech was well meaning and I think some of it has been taken too far. Humor is some of the best medicine for dealing with difficult situations so I can see that side of it too.

    Words can hurt even when they are not intended to. I have been trying to get my boyfriend's son to understand why using "That's so gay." is deragatory and he doesn't understand. So as you can see, I go back and forth, even in my own convoluted writing. I am enjoying the discussion here.

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  37. Michele Says:

    I have never been to your blog until today. I'm sorry to say, I hadn't heard of your blog until I saw you speak at the Keynote. Later, I had the opportunity to talk to your husband at the Cheeseburger part – after he nearly knocked me down and was terrified he'd be thought of as the abusive husband lol – and we had a nice long chat. Or rather, it was talk to me or be silent and weird, since we were trapped in our corner. Personally – I don't use what can be considered derogatory terms with my kids, because my oldest gets enough of that at school, since he's in the Special Ed department. He's 8. HOWEVER – If I'm writing on my blog, and that's what's coming to me, because THAT's what I'm going through? I use it. If my being honest about what I'm going through as a mother isn't furthering the "Cause" of the disabled? So sorry, too bad. It's not necessarily my blog's place to be changing the world – it's my space to process. And sometimes I need to process out the derogatory. God, I hope that came out right. It's a pleasure to meet you through your blog, and your husband was lovely to me.

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  38. Catherine Says:

    My father insulted my siblings and myself throughout our childhoods and he would tell people that it was because we had such a good relationship that he could do that. Do you truly believe that words that are routinely used on the playground to insult like retarded aren't insulting? Aren't there many other ways to use humor to get through the dark days? I think there are, but I think its hard to understand when a child is a baby/toddler and much easier to understand after years of friends, strangers and family saying ignorant, hurtful things to you about your child.

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  39. sarah g Says:

    Hi Stephanie,
    I'm sorry that you have to experience this at all. That something which can be already hard to deal with, is made harder by people who dont know you. Everyone feels they have the need to have an opinion.
    I was in an abusive relationship; I can joke about it and so can those close to me. Someone who has never undergone it wouldnt understand.

    I, as of yet and hopefully never, dont know what is like to undergo what you went through. However you have to deal, deal. If you arent telling Lucas from the beginning that 'he is broken' or telling him 'dont worry bean, youre retarded". You arent pigeon-holing him into being something. You are being honest about what he undergoes. Why you cant do that, I dont know.

    Yes you are a role model. For what? For honesty. For sharing. For the strength to deal with what you deal with AS its happening. You dont hide behind PC, and correct. You dont hide behind 'lets wait till it dies down'. No. You share how you feel when you feel it.

    Healing comes in openess, honesty and vulnerability. So I applaud you. Its your child. Its your life. Live it how you have to. People make things insurmountable.

    I make cracks about my relationship with God. Why? becuase i have one. those who dont, couldnt imagine doing so. You make it tangible and something that can be handled, instead of an insurmountable obstacle that will hinder your life and Lucas's.

    Thank you for your honesty.

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  40. Colleen Says:

    OK, obsessed w/ this… sorry. Keep coming back to read.

    Re: Susan at 10:38:04 AM, Thanks for the link.

    Ummmm… just be SURE to put the *dash* icon in the darn-tootin part of the com addy. I didn't, the first time. Yikes!

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  41. thecoconutdiaries Says:

    I'm on the fence too, mainly because I think words, all words, derive some of their meaning from the speaker's intent. You can say the word "boy" in a way that is innocuous and harmless or you can say it in bold have it mean something totally different.

    It seems, for you, saying "tard cart" is an expression of your power over the situation rather than a blanket mockery of people with disabilities. I guess the problem is that your putting it out there seems to give others the license create their own intent. What do you do the day some kid calls it a "tard cart", too? Do you get frustrated? Upset? Protective? I guess when you put it out there, you lose the ability to dictate how others use it.

    P.S. Like Amanda, I was going to reference "Finding Nemo" as Disney's attempt at addressing disabilities. Now we just need them to make a little brown princess as a heroine for my (imaginary) kids!

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  42. Megan Says:

    retard
    Tard
    Gimp
    Short bus
    Ree Ree

    There I said it…

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  43. semichrmd Says:

    I totally agree with what someone said above that laughter is indeed the best medicine, my husband has MS-he now uses a cane and walker to get around(he's in his early 40's). We could sit around and wallow and say how horrible life is and how much it sucks that this happened or we can laugh and make jokes about it. It doesn't work for some people but it works for us.

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  44. roe Says:

    Howdy! : wave :

    My first reaction was, "Of COURSE she should be able to use whatever terms she wants in her blog!" But then I thought about it a little bit — and now I'm not so sure. But my reaction isn't for the parents of kids with disabilities — it's for the kids themselves, both yours and others'.

    Stephanie, your kids may read your blog some day. Are you comfortable with them knowing how you describe and discuss them? Are you okay with other folks reading what you say here and taking it personally, as your stance on disabilities as a whole?

    My sisters and I have cleft palate (we got lucky and escaped cleft lip) and had to deal with multiple operations and years of speech therapy. And, yeah, we got teased in school. Sometimes quite a bit. If I'd found out that my parents were calling me "marble mouth" into the bargain, on their blog? No matter how lovingly it was meant, I'd still have a problem with it; I'd have been really hurt. That's my perspective; your kids' mileage may (will!) vary. :)

    And Colleen? You'll get through this. I grew up and joined a rock band for a while. :D Both my sisters and I did community theatre, too. :)

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  45. rachel Says:

    I couldn't read through all these comments but in response to your (SK's) response to Colleen:

    I read Taye Diggs remarks and I absolutely see his point. But I can't make that analogy here. YOU are not "retarded." Of cousre you identify with your child with special needs and love him to death, but YOU don't have special needs. So you can't make that word "your own." If I had special needs I'd be offended by your choice of words and I would NOT think you were entitled to use them even if you had a special needs child. If you yourself had special needs I might think otherwise.

    I'm not sure where I stand on this whole issue – but I don't think the analogy to use of the "N word" fits (for many reasons, obviously, but I am just talking about "making it your own").

    FROM SK: When you're an advocate for your child, who cannot speak, when does it become your "own" issue? Ask any parent of a child with special needs and ask them if it's not their issue, too.

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  46. anony Says:

    Well I wear thigh highs and write poetry.

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  47. Lana Says:

    I only made it through half of your post, and none of the comments, but I had to say my piece.

    I have a mental illness. Depression and anxiety. I have a friend who goes through the very same things. We refer to ourselves sometimes as 'crazy' or insane. Said as a joke. Because it is ours. Because we understand and we embrace that it's a part of us.

    But, thinking, just reading your post, that if someone referred to me as crazy or insane I would be absolutely offended. It would get under my skin, and I would lash out with a 'how dare you?' They don't have the right to poke fun at something they don't understand. It's not theirs.

    This all brings me back to an argument I had with a friend of mine, at the time. She always said she had no boobs to speak of. Joked about how she looked like a boy. I joked to my friend about her lack of mammaries, and my friend flipped her lid. I told her, "When you make fun of it, you make it alright for others to do it too."

    We should all be more careful. Put a filter on – outside our closed doors, that is.

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  48. Percy Says:

    I think it really needs to be in perspective. This is a 1 year old kid and SK isn't calling him that "Hey helmet head come here". Her words to deal with her situation. The fact that people get so uptight about words other people use is troubling.

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  49. kate Says:

    Tard cart is funny. I'm sure when you see him walking behind it you practically ball at the effort and progress no matter how small. When you judge someone like Stephanie, you are really showing your own insecurities.

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  50. Julie Says:

    I agree with Monda.

    Fuck it.

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  51. 4eyes Says:

    Perhaps folks in the club “Parent of Handicapped Child” opps I mean “differently abled children” may use terms like “tard cart”

    but no one else. Having a child with disabilities is not the hoped for outcome of pregnancy. But being willing to accept/love/cherish whatever child is birthed is important.

    Words that state the obvious, in a cruel way, tend to result in lingering wounds. Right Moose?? FYI I found Obama’s comment about the Special Olympics nature of his bowling skills to be funny…. but was it acceptable?? Over and over on a daily basis I make a distinction between what I think…and HOW I say it.

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