My Child’s Disability Is Not a Death Sentence
A few years ago a friend sent me a frantic message on Facebook. She was concerned about her child’s physical development, and she wanted to run a few things by me — her chief concern was that her then toddler daughter had started walking on her toes. Mom was a little freaked out.
My son has mild cerebral palsy, and for reasons I can’t entirely fathom, sometimes people I know assume this means I know Everything There Is To Know About Cerebral Palsy and they’ll occasionally ask me, instead of their child’s pediatrician, about medical conditions. Spoiler alert: CP is a huge spectrum, there’s no way I know everything, and you should always just ask your kid’s doctor.
This friend had recently suffered her second (or third) miscarriage, and I assumed she was in a delicate space. So when she followed up my reassurances that simply walking on your toes doesn’t mean you have cerebral palsy by writing something like, “Oh good. That’s what my husband said, but I was convinced she was dying,” I tried to be compassionate. In fact, I tried extremely hard to summon every bit of compassion I have in me so I could resist the urge to launch into a paragraphs-long response to her seemingly innocuous, actually offensive statement.
I think I wrote something back along the lines of, “Nope! She’s probably just fine, but ask her doctor if you’re worried” and closed the message out.
Clearly this has stuck with me.
I’m sure that’s because I never circled back to tell her how the question made me feel. At the time, I didn’t want her to feel bad or to overcompensate for being a jerk; I just wanted her to… stop asking me questions immediately. But the result of trying to be careful about her feelings is that I haven’t stopped thinking about this one Facebook message. Like, ever.
My son’s cerebral palsy is mild. This doesn’t mean it’s not hard because it is: he faces daily challenges and being a little boy who has CP in a world that’s filled with ripped, able-bodied superheroes as inspiration isn’t easy on a child’s confidence or the paternal soul. He wears AFOs (braces) on his legs for a few hours during the day and again the entire time he’s sleeping. His muscles get tighter when it’s cold outside, and we have to ramp up our at-home stretches and physical therapy sessions at the hospital to combat it. Every time he has a growth spurt it’s like we’re starting over again because his legs and hips constrict and his ankles aren’t as loose as they should be.
But our journey is different compared to the journey other CP families are on, and we know it. We spend a lot of time being thankful that our son is able to do everything he wants to do. Sure, he might need to do it a little bit differently, but he can go hiking, ride a bike, do yoga. He has full cognitive function and reads like a champion. He’s a smart, inquisitive, awesome.
One thing he isn’t is dying or cursed with an affliction. He’s not an undesired child. His life is not a dark one, and having CP isn’t the worst sentence he could have received. I know no one goes into parenthood hoping their child will have a lifelong medical condition (and my son actually has three), but we didn’t greet his diagnosis with fear and doom, and his life is lived to the maximum because we believe in celebrating where you are while you’re there, for as long as you can.
So here’s what I want you to know about disabilities: this world is a spectrum. Living with disabilities can suck, but having a disability isn’t the end of the world, and it doesn’t have to mean someone is dying. In fact, it oftentimes doesn’t. Sometimes one disability is harder than the other, but consider this: there are a lot of people in the world just like my son. Kids who love Captain America and “Star Wars,” teens who spend too much time on their phones and can’t wait to live their own lives, and adults who are completely independent and wildly awesome. Implying that their lives are tragic or that they’re experiencing a worse-case scenario takes those glorious, beautiful lives and ignores all the light these people live with, despite their challenges. It ignores that these kids, these teens, these adults, these humans are people just like you, just like your kids. It ignores what is good about their lives, and instead emphasizes what is perceived to be bad.
Disability Pride exists for a reason, and you’d do well to learn about it.