Don’t Call My Disabled Daughter An Inspiration

Of the many graduation cards my daughter received this past spring, a couple family friends wrote “You’re an inspiration!” in them. My daughter asked me what they meant by that. Honestly, I wasn’t sure what they meant. Luckily, while I was thinking of what to tell her she shrugged it off and went back to watching TV.

The fact is, my daughter is awesome! I think anyone who knows her can agree on that. But Inspirational? I don’t know about that. Honestly, she is a bratty teenager who spends all of her time at the mall, talking to her boyfriend on the phone, watching Family Guy, texting, and watching TV. That pretty much sums it up. Not much inspiration going on there. Really it comes down to people congratulating her for being alive, managing to get up and leave the house every day, and not being depressed about it.

When people tell her she’s brave she really has no idea what they’re talking about. I mean is it brave to get up in the morning and go to school? Or walk to the park? I mean most parents with a kid like mine (who is not disabled) would be telling their kid they need to do something with their life and they can’t just spend their whole life at the mall, texting.

I mean this kid is spoiled; she has an iPhone (and wants a new one), iPad, cable tv, and she complains all the time about wanting more “stuff”. She’s a bratty teenager who thinks everything should be handed to her, just like a million other bratty teenagers who need to get their shit together. Granted, “getting her shit together” might not look the same as it does for someone without a disability, but it’s pretty damn close. You know, set some goals, get a job, do something constructive, be good to people, help someone other than yourself.

After my daughter was born people didn’t know what to say (which is understandable), and some people said stuff like: “She might grow up to be a famous scientist”. I know people said these things to try and make me feel better, but my response was: “My hope for her is that she will be able to live a normal life like anyone else”. I mean how many people are told that maybe their kid will become famous someday when they’re born? If they do it’s meant as a joke.

What they’re saying is that having a disability is so bad that we need to cheer you up and say that you might get a consolation prize and end up with a famous kid. An exceptional kid. “She’ll be an inspiration to everyone!” they said.

And while we’re on the subject of unwarranted praise, I’m not a fan of being told things like “I could never do what you’re doing”, “You’re my hero!”, or anything similar. I always wonder why I’m being congratulated for being a mom to my kid. Isn’t that what all parents do? They give birth to a baby and then they raise it. People also say “didn’t you get the test when you were pregnant?” as if that would change anything. I feel like they’re assuming that if I would have known I would have had an abortion.

I don’t want extra credit just because I happen to have a kid with a disability. The fact is that I am like a lot of moms. I am a good mom in many ways and I totally suck in a lot of other ways. I don’t spend enough quality time with her. We stay in our separate areas of the house most of the time and we don’t go a lot of places together. She does things outside of the house mostly with PCA’s (personal care attendants) and I think having PCA’s has made me lazy about doing things with her. I know I am a good advocate for her and I love her like any mom loves their kid, but the idea people have that I am an exceptional mom is just absolutely not true. I really am no better or worse than any other mom. I’m right there in the middle, and her having a disability doesn’t automatically give me a halo.

My kid is amazing in a million ways, but none of those things have anything to do with the fact that she has a disability. I agree with Stella Young in this video — telling my daughter that she is inspirational and brave just for being a person with a disability is sending a message that having a disability is so bad that they just don’t know how you can hold your head up every day.

It is a fact that people with disabilities are only seen in two ways. They are either pitied or they are looked up to as an inspiration. Rarely are they looked at as just a regular person. I like the term “inspiration porn” that Stella uses in her TED talk. In the disability rights community they use the term “super crip” to describe the people who have “overcome” their disability. The people in the stories at the end of the news that make you all teary eyed and think — if they can do that then I should be able to do something with MY life.

I would like to see more people with disabilities cast in movies and tv shows as just the sister, or the mom, with their disability having nothing to do with the storyline. They’re just a regular person, doing regular things.

And that’s who and what my daughter is — A teenager who says and does typical teenager things.

Think twice before telling a person with a disability (or their parents) that they inspire you or how amazing you think they are. Think about why you wanted to say that to them. If they didn’t have a disability would it be something you would still be inspired by? If the answer is yes then by all means tell them that they are an inspiration to you. But if they go to work every day, come home to their family, and just have a regular life exactly like yours, then you might want to rethink calling them an inspiration.