Before my daughter, Hope, was born I was so worried she would have a disability. Sure, I knew this fear was disproportionately irrational. Yes, I knew cerebral palsy was not hereditary. Still, I worried, and worried, and worried some more. You see, I had grown weary in a world where I was not only told, I internalized, I was not good enough.
When I was born, I was left at the hospital; Disability. I transferred to schools different from my neighborhood friends; Disability. Yes, I even rode the short bus; the pinnacle of Disability for a young child.
The list goes on. “We’ll let you put on the uniform. You just can’t actually play town league baseball.” WOW! I’ve never written or said that aloud before. That’s called cripple, crip for short, crip-denial… I like that. It sounds cool, except living it out isn’t cool at all. Do you know I had another child’s parent tell me once, “We never treated you differently.” Ummm, “Hello?”
Of course, this meant there’d be no girls. I mean, who would want to be with or want their daughter to be with me? This didn’t come just from the inside. This wasn’t just a “me problem.” When I was very young, and mustered up the courage to call an early crush, a father instead answered the phone and when I didn’t get the hint told me, “Please don’t call here anymore. She wouldn’t want to talk to you.”
Later I’d move on to girls telling me “What a good friend I was”, and ask me, as they spun their tales of woe, “Don’t you think if Boy X liked me, he’d be sitting here with me?” Again, ummm, “Hello?” Sure, many boys encountered this. I simply encountered it more; Disability. There was no inspiration porn (look it up) inspired girls asking me to the prom. But, I digress.
All the while, especially in my early years, I was on top of my game. (Talk about dichotomy.) In some circles I was a cripple hero. The ultimate boy overcomer was I. I wanted to ice skate, and fortunate boy that I was, there was an excellent organization that taught me, and other disabled kids like me, how to do it. Never, one to shy away from the spotlight, I quickly became a sort of poster boy for this upstart organization and I loved it.
I was in the newspaper multiple times, I was on TV the same. I was even on the show “Real People.” Remember that show? In case you don’t remember, it was a show which highlighted overcomers. Wait, was that early form inspirational porn? See?! Disability is sneaky! …No matter, I was just happy to be included. I was an insider; part of the team in a real, meaningful, way. I haven’t even told all the stories!
Others, over the years, have thought to include me too. Friends, colleagues, teachers, and others. As my friend, Steve, once said when I wanted to feel the freedom of a motorcycle beneath me, “If you want to ride, we’re going to help you ride.” I am so grateful to so many, named and unnamed, for letting me be me, your equal.
That’s just it. Equality became the exception somewhere along the line for me and others like me. If I’m to be included, I have to measure up on your terms; to fit in, and fit your impossibly high standard mold. That’s not equal, that’s ableism (look it up); a real thing that happens in my world though few will acknowledge or accept this truth.
There you have it. I didn’t want all this to be the world of my little girl. I didn’t want her to have to fight as I. I want her world to treat her better than mine treated me.
For the record, I still want that world to be her truth. I think every parent wants their child’s world to be better which is why I’m fighting to make my world, her world, and your world, different and why I ask you to join me. Join me in whatever body you live; stand, sit, roll, or stroll, to make our world one where equality is the accepted norm.
As I read someplace this week, and I wish I could remember where, if access was the standard (Listen up church!) would wheelchair use even be considered a disability? It’s not impossible. Perhaps you’re old enough to remember, we once lived in a world without curb cuts too.
So I continue to fight. I may be louder than you’d sometimes wish. I’ll meet your poker hand and tell you, “I don’t want to be that guy either.” Blame it on age, musical, or theological viewpoint. Blame it on Bob Marley, Chuck D, or liberation theology. I hope you’ll place the blame, if we need to blame, where I believe it goes; on a worldly attitude tilted uphill for this wheelchair user. A world where I might keep up for a while but will find it nearly impossible to gain momentum.
As for my daughter, (remember her?), because I sure can’t forget; my greatest gift I’ve ever received. She is so much better than me. Nine years old and her world is already inclusive. Really, it is!
Her teacher told me a story recently. There’s a boy, much like me I imagine, who has cerebral palsy. He’s an older boy, a recent graduate of her school, who comes back to talk on occasion about disability.
As he was there one day, some kids made jokes and other kids, Hope’s age, admitted to being scared of him. However, before the teacher could talk to them, where was my daughter? She was right there, explaining to these other classmates her experience of disability. The teacher just sat back as Hope told them all about her wheelchair using dad with cerebral palsy, culminating with the closing line, “He’s not scary. He’s just my dad.”
Friends, this is what “On Earth as it is in Heaven” (Matthew 6:10, Luke 11:2) looks like. It’s the way to which we are to be oriented (Micah 6:8)
I guess I wouldn’t have worried so much about unborn Hope if all the whole world truly looked this way. So, may a little Hope enter your life too. May you remember her words the next time you encounter inequality in whatever way it presents itself and speak up; something she shows us is really simple if you don’t over think it. I know my life is infinitely better with her in it. I’m proud to be “just her dad.”