Tuesday, October 4, 2011
Why the Word “Retard” Hurts
Everyone says it, right? I used to say it. But after you have a child like Lilli, well, you don't say it anymore. It would be like joking about getting cancer to someone going through chemo. You just…don't.
I want to make it clear that this particular post is not "aimed" at anyone. I have no hard feelings at all. This word is so prevalent that I am not writing about it for a specific person to read and think I am talking about "them." I write this blog with concern and thoughtfulness for others, to help and educate, and to give people a window into the world of what it's like to be a mom of a kid with special needs. I hope anyone who reads it is encouraged in some way.
This is old news, isn't it? Come on, everyone knows they should not use the word "retard," don't they? Well, unfortunately, it's one of those words people still use when joking around. I guess I thought it was worth my time to help others understand, even after all of this time, that yes, this word is still around. I even hear it from friends and family.
I spent time recently with a new acquaintance, a friend of a friend. She was super sweet and I liked her instantly. We both babbled on about "mom stuff." And then she said the phrase "I hope people don't think I'm retarded!" A few minutes later she said, "I feel like a retard!"
I winced a little bit but ignored it.
Moments later, her husband walked over and said something about looking like a "retard." Yikes. I really, really like these wonderful people. I wasn't offended, I just was not sure they knew that "retard" is a hurtful, recently outdated term. They know about Lilli. I guess they just did not make the connection. I just wish I could tell them that they might want to consider dropping that word from their vocabulary, because it's painful to others. I know they just had no idea.
I want to try and explain how it affects me personally. I can't speak for other parents of kids with special needs, but I think it's a pretty safe bet that there are others out there like me. To give an analogy of how it feels, I can only think to compare this to other experiences I have had with personally painful words in the past.
When I was 13 my mom died after battling 5 years with cancer. I was in a world of hurt, and for years whenever anyone said the word "cancer" or "died" or even the word "mom," I jumped a little. It was like it physically hurt to hear those words. I was so sensitive to death back then, I could not stand it when people joked and said "Oh I almost died laughing!" or "I was about to die of embarrassment." Simply because it hurt to hear the word "die." Whenever I heard the word "mom," I would instantly feel hurt in my heart, because I didn't have a mom anymore. It took years for those words to not sting me, but now they don't. Now, I certainly did not expect anyone to stop using the words "die" or "mom" around me. I am just explaining that I had a reaction when they said those words because of my personal experience. I have a similar but more muted reaction when I hear the word "retard." But it is in a different category. That word is not necessary for everyday conversation. There is a difference.
I gave that analogy so that you might understand why a person who has a loved one with special needs might be upset when you use the word "retard." It is a loaded word. It makes no sense to use it when joking around. Doesn't everyone have these words with personal meaning that sit like waiting water balloons? You're having a normal conversation with someone, and they use a normal, everyday word, only that particular word has all kinds of baggage attached to it for you. All of the sudden, BANG! You're hit with it. But you go on with the conversation and shrug it off. Think of words that sting you personally…only for a second maybe, but you still have to mentally shake it off and move on. Racial slurs. Maybe words about crime, such as rape, shot, killed, drugs, prison. Perhaps words about health: Cancer. Heart disease. Surgery. Terminal illness. Maybe words like: Divorced. Widowed. Cheated. Sued. Lied. Robbed. Foreclosure. Unemployed.
I am assuming everyone has a word or two like this. Whatever traumatic thing has happened to you, those words related to that trauma have some degree of hurt dangling from them. Words change too, over time. I can hear the word "mom" and not jump now. Heck, I hear the word "mom" all day long from Chloe and it makes me yell "HANG ON A SECOND!!!" So thankfully our hearts can heal over time.
In the NICU at Lilli's birth, doctors told Jasen, "Your daughter has brain damage." "Well, what does that mean?" Jasen asked. "It means she will never walk or talk and she will need help all her life." I would venture to say those were probably the most life-changing, drop-a-bomb-on-you words Jasen has ever heard. I was not there to be hit with that, I was recovering on another hospital floor. Jasen tried to soften the blow when he told me later, but how do you soften the words "brain damage?" Years later, in a school meeting about Lilli in Virginia, an "autism expert" made a joke before the meeting began. There was a broken chair at the conference table. He said, "Oh, I'd better not sit in that chair, I might fall and hit my head and get brain damage!" Everyone laughed except Jasen and me. Um, did the guy realize that there were two parents sitting at the table, who had a child with…brain damage? What a terrible way to start out a meeting about Lilli. I never forgot that.
As for the word "retard…"
Doctors are not supposed to use that word anymore, it's out-dated. Newer doctors use the term "cognitive delay" or "mentally challenged." That's the PC term. But just a few short years ago when Lilli was born, everyone was still saying "mentally retarded" to us. I can think of 6 different specialists off the top of my head in those first few years who tossed the term "retarded" around when we took Lilli to figure out what was going on with her. Only it didn't feel like a water balloon when they said it. It felt more like a ticking bomb being casually thrown around the room. I remember when one specialist told me Lilli had cerebral palsy. She was 12 months old. He got all quiet, sat down in front of me and handed me a pamphlet while slowly telling me "Lilli has something we call….cerebral palsy." He explained it to me while an intern stood awkwardly in the corner and I tried not to cry as the floor fell out from underneath me. When Lilli was about three, we spent a lot of time trying to figure out what was going on with her. Before she was diagnosed with autism, specialists speculated about different diagnoses. One doctor said, "I don't think she has autism. I think she is just mentally retarded."
See. We parents of special kids hear that term in a not so funny way. I am sure there are still a ton of old school doctors who say it to patients.
Parents of kids with special needs still hear the term "retarded" all of the time from the government, too. There is something called an "MR waiver" – MR stands for "mentally retarded." Pretty much all kids with some kind of mental diagnosis qualify for it. The waiting list in South Carolina is in the thousands. These are all kids waiting for the state to qualify them for benefits. Having the MR waiver helps pay for medical equipment, adult sized diapers, formula for tube-fed kids, etc. Being on the waiting list means you have to pay for it all yourself until maybe you might reach the top in about 5 to 10 years. In the meantime, your kid is on the MR - Mentally Retarded - waiting list. Lilli is on it.
Different words have hurtful meanings for different people. And for us, the word "retard" stings a little every time we hear it. I can't help it. Friends and family who love us and love Lilli will joke and use the word "retard," and sometimes I will have a split second irrational thought: "That person doesn't love Lilli. They don't love me. If they loved us they would be sensitive and not say that word." I KNOW that is so ridiculous! But that is how much it hurts. You might read this and think, "It's just a word. It has no meaning. I don't mean it like that when I say it. I'm just joking around."
I am sure you are joking. But it still hurts.