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.
