Early in my public appearances in relation to autism and my work in the field, I heard one message repeatedly: You’re so inspiring!
Inside, I cringed. When you meet someone with a disability and tell them that you’re inspired by their very existence, it sends some pretty gut-wrenching messages. You’re telling that person that when you imagine being in their shoes, you probably wouldn’t find it worth getting out of bed in the morning. You’re saying, “You really have it so bad that you’re a brave soul just for getting dressed and leaving the house.” You’re insinuating that the person is somehow remarkable for doing very everyday things.
Listen, when I write or get up and speak, I’m just doing what I do. Your work might be in an office or a school. Mine is behind my computer and interacting with people. I’m doing what I do best in a way that I hope will benefit others with the mind I’ve always had and the only body I’ve ever known… just like you do. How would you feel if someone said that they’re inspired that you have the gumption to live a public being as short as you are, or that they’re inspired by your willpower to walk from here to there? You’re just doing what you do with what you’ve got.
When you post a meme of a person with Down Syndrome accompanied by the text “the only disability is a bad attitude,” you undo all the work I do every day. Disability doesn’t mean that anything is wrong with anybody. It means that a person has a mind or body that works differently than the majority of minds and bodies in his society. So, in this world, autism is a disability mostly by way of the fact that approximately 98% of people are not autistic. But, if the “only disability is a bad attitude,” then why should a boss provide accommodations for a blind employee? Just think more positively, Pete, and you’ll be able to do your work! Why should a school have IEP plans? A hip-hip-hooray or two is all that’s needed for any student to succeed! And, to paraphrase the awesome disability advocate Stella Young, when a wheelchair user approaches a staircase, a big smile is totally going to turn it into a ramp. Right?
No. Disability is a cultural construct, but that doesn’t make it less real. Accommodations are absolutelytotallyandcompletely necessary.
How about the meme with a person with prostheses running and the statement that “your excuse is invalid.” It reminds me of 10th grade gym class, when the day came, as it came every year, that we had to run a timed mile. I had gym first period in the morning. I’ve had type I diabetes since age 3 (and now approximately a zillion other illnesses), and that morning, my insulin pump site had a kink in it. My blood sugar was 590-something, which is critically high. A normal blood sugar is 70-100, though type I diabetics are well-acquainted with numbers far outside that range. Above 350, I run IV fluids from home, and above 1000 is “incompatible with life.” I was 970ish when I was diagnosed.
So, anyway, my gym teacher told me that if I didn’t run my mile that day, that I would get an automatic fail. I ran it during my lunch period… which meant no lunch. And I hadn’t had breakfast because of the super-high blood sugar, and I was still very high. But I was ranked first in my class of 550 students… I wasn’t going to lose my rank because of a damn one-mile run. So I ran it.
And, halfway through, I collapsed on the track. The gym teacher didn’t even stop the clock and didn’t come over to check on me. I finished. the. freaking. test.
Though the horrible quip about my excuse being invalid wasn’t on my mind at the time, isn’t that exactly the kind of behavior it’s supporting? It’s saying to ignore any and all signs that maybe you should stop doing something, that maybe it’s time to take another direction, that it’s okay to say that something isn’t safe or otherwise okay in a given moment.
It’s also saying that disability is never an okay reason to say that I can’t do something. It’s saying that accommodations are not necessary, that people should just try harder and do the thing. If a person with a mobility disability cannot walk, it’s blaming him for it. If an autistic person cannot speak, it becomes his fault for not working hard enough.
Finally, it’s sending the able-bodied person the message that, dude, at last you’re not this effed-up. If this seriously broken person can do the thing, then certainly you can do the thing. It’s making you feel better about yourself and your circumstances by feeling pity for someone else… not okay.
I still interface with the public with respect to autism advocacy, but I’ve learned that there are things I can do and say that encourage people to be inspired by things other than my disability status. I don’t ever want people to hear about my health battles or autism and think to themselves, my goodness, if that girl who is that broken can write and speak and get her Master’s and so forth, and I’m not nearly that messed up, then surely I can do it.
What I do want is for people to meet me and think to themselves, holy mackerel, that girl is on fire! She’s enthusiastic, kind to others, and passionate. I want them to admire my faith, peace, hope, and joy and get the message that those things are theirs for the taking, too… and not pity my circumstances to feel better about themselves. To encourage the reception of the right message and not the wrong one, I balance the time I spend talking about disability and the time I spend talking about other things, like faith and mentoring and passion. I broaden my message to reach people on a basic level of humanity instead as often as I can, and I try to make the connection that autistic people are first people without any qualifiers. Yes, autism is part of my identity, but my humanity comes even before that. I have to both explain that autism makes my experience very different… and share the ways that it really doesn’t make me so different, after all. It’s a balance, and not an easy one. Following a presentation, I connect with people not just about autism but about almost anything… sometimes, I pull autism back into it, since that’s the reason most people meet me, but it’s not the absolute focus of every conversational exchange.
People still tell me they’re inspired, but it’s a very different message. They follow the comment with things like “….you’re so passionate about what you do,” or “…your faith is incredible” or “…it’s awesome that you’ve followed your dreams.” The last one, I still qualify… I don’t follow my dreams at all. If I did, believe me, that I wouldn’t be here and I wouldn’t even be alive. I follow God’s call on my life, which is utterly different than following my own dreams.
But, that’s a qualification I’m happy to make. I’m happy that the adjustments in the way I present and how I engage with people sends the message that the inspiration really has little to do with my disability… and everything to do with what I know to be God’s redeeming work in me. I often say that if you’re inspired by anything I say or have done, then your inspiration is not me at all but God. He’s the one who pulled me out of the muck and mire, out of the darkness, and into His marvelous light… and this amazing journey.