Let me tell you a few things about my son, Max. He’s 11 and growing fast–this boy can eat his body weight in mac ‘n cheese. On weekends, he likes to play Wii games and zone out to movies. He rides his bike up and down our street like a maniac. He fights with me about bedtime.
Pretty typical 11-year-old, eh?
Now let me tell you more about my son. He has cerebral palsy. At times, he needs help grasping spoons at meals because the CP makes muscles in his body, including those in his fingers, tight. His younger sister helps him play soccer and bowling on our Wii because it’s hard for him to manipulate the control. When he chills and watches movies, his mouth goes slack and lets out a little drool. He rides an adaptive bike, which looks like a gigantic tricycle. When he talks, sometimes the only word you can discern is the word “No!” because his speech is garbled.
Forget rose-colored glasses; people peer at my child through the lens of disability. Oftentimes, they regret that he has cerebral palsy. — Ellen Seidman
So in some ways, he’s not like your average 11-year-old. Sadly, the differences are often all that people see when they meet him. Forget rose-colored glasses; people peer at my child through the lens of disability. Oftentimes, they regret that he has cerebral palsy. This I can tell from the pity stares or pity-speak.
Recently, Max and I were at a bookstore and another mom and I got to talking. She asked what Max had and I told her. “Oh, poor thing,” she said, as if I had just mentioned that he had three weeks left to live. “He’s just your average awesome kid,” I responded.
This week, the strength and power of people with disabilities is on glorious display at the Sochi 2014 Paralympics. But the other 51 weeks of the year, both kids and adults with disabilities are often seen as pitiful.
I get that the pity is usually not coming from a bad place–it’s that people just don’t know. I used to be one of them. Growing up, I didn’t have anyone in my life with a disability. My parents never spoke with me about people with disabilities, not because they were crappy people but because they lacked that awareness. And so when I’d see kids with special needs at malls or in parks, I felt awful for them. I thought that it was a terrible fate to be a child with disabilities, or to parent one.
Then I had a child with disabilities.
Max had a stroke at birth, and he got brain damage and cerebral palsy. While I had a whole lot of pity for both of us when he was little, as his personality and abilities shone through, it dissipated. When I look at Max, I see a determined, good-humored, inquisitive, charming kid with really good hair. I see my child, not a poor boy who has cerebral palsy. As his mom, I try my best to help people see the child, too.
One of my greatest wishes for my son’s future: For people to better understand that no matter what physical or cognitive challenges exist, a person can have a disability and have a life. Pity brings my son down. It says that he is lesser being than other kids. Max doesn’t feel badly for himself; he just goes about his days, being his wonderful kid self. I’d hate for him to someday be aware that people think he’s pathetic.
My son will have formidable challenges to overcome in this world, both physical and pragmatic. Pity is one obstacle you can help mitigate. It’s easy: Think equality, not sympathy. Don’t gaze upon my son with sad eyes, and don’t “awww” him. Try to treat him as you would any other kid, and encourage your children to do the same. Instead of gawking, say “Hi.” Ask about his favorite stuff. Joke around with him. If he doesn’t have the words to articulate an answer, the speech app on his iPad will.
One societal effort that can help: More inclusion in school and local activities, everything from cheerleading squads to Boy Scouts. When kids get to know those with disabilities, they can better understand how they are more alike than different. They’ll be more likely to treat them as peers than to pity them.
Another mom of a kid with special needs recently told me that when strangers see her with her son and say, “May God bless you” she responds “He already has.” Loved that. Our kids aren’t tragedies. For the record, they aren’t saints, either. Max can be plenty bratty and obnoxious–you know, like any child. Yes, he may require certain accommodations to level the playing field. And yes, the most common label for our children is “special needs,” for lack of a cooler term. Thing is, we don’t want you to consider them special…or pathetic.
Think of them as kids.
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