Today I’m going to tell you about my brother.
I don’t often bring up my bro because it starts a longer conversation that is often off-topic to whatever point I’m trying to make at the time. And some days, I’m just not interested in having that particular conversation. But here goes.
Me and my bro.
My older brother Erik has cerebral palsy. We are now supposed to say that he is “Developmentally Delayed” (which seems a cruel joke to me, as though someday he will catch up). We used to say he is severely mentally retarded. Erik’s mental capacity is such that he doesn’t care how you refer to him, but I do, so be nice. He doesn’t speak and communicates basic needs through a limited collection of sign language. He is also physically disabled; he does not walk and uses a wheelchair.
He was born two months premature, probably contracting a virus as a fetus (though we don’t know for sure, and will probably never know). He lived at home with us until he was in his early twenties and now lives in a community placement home with other adults with disabilities. He went to a special school, and now goes to a day program where he gets physical therapy and they continue to keep up his “life skills.”
The thing is, I can’t really tell you much about my brother until we get past these basic facts. Nothing else about him makes sense until you have this context. Not the funny things he did growing up, not his intrinsically sweet nature, not the mischief he got into, and not what we all learned from him.
I had a teacher in high school who once told me that I probably didn’t understand yet the impact my brother had on my life; that I would be unpacking that particular bit of my life for years to come. A prophetess, that woman.
I am a very verbal person. I love language, I love words, I have trouble remembering movements unless I name them, have trouble solidifying my thoughts until I speak or write them — so how do I process a whole relationship in my life that is essentially non-verbal?
Not too long ago, my parents sent me some old family videos they had recently had transferred to digital. There was one from when my brother and I must have been about 4 and 6. Erik was in leg braces, valiantly trying to walk using a homemade set of parallel bars. I know what the people in the video do not: it would be a fruitless endeavor. Erik would never walk, but that didn’t stop him from trying, putting every bit of effort into hauling himself along, attempting the impossible, because his parents asked him to, and in the video you can hear my parents cheering him, encouraging him.
And I’m there too, in the background, in a little pink dress, and I’m dancing away, leaping and twirling on my fully functional, if not particularly graceful, legs, trying to get my parents’ attention. And watching this as an adult, I realize I internalized then that nothing I do in my whole life will be as difficult nor as brave as my 6-year-old big brother trying to walk. Not if I became a prima ballerina or discovered the cure for cancer. It doesn’t mean I don’t put effort into everything I do — but though I am able to accomplish more, it comes easier for me. I recognize the grace I have been given to have a fully functional body and mind, and the humility to know that I have done nothing in particular to deserve them. I was lucky. The virus caught my brother, but not me.
And in a larger sense, there is the recognition that we are all only one virus, one car wreck, one skiing accident, one gunshot, one slip-in-the-shower away from disability. As a society, we have only in the last 40 years started to recognize that people with disabilities have a place in our society. When Erik was born, it was not uncommon for parents to leave severely disabled children in state institutions as a matter of course. That school Erik attended? We fought for the legislation to make sure he was educated, and we fought for its implementation and enforcement. For a bus that could take him there. For respite care, so my mom could do the shopping, go to school, and go back to work. Where he lives? Fought for that too.
I have heard some people say that it seems like a disproportionate amount of money is spent on one group of people, particularly those who may never “give back” to the community. I hear people complain about having to spend extra money when renovating a business to comply with the Americans with Disabilities Act. And the crowning touch: able-bodied people complaining about not being able to use disabled parking spaces. But here’s the thing: people with disabilities are a part of our community. They are not some separate entity. And unless you are comfortable with the idea that they should be left on a mountainside at birth, or shot like a lame horse, (and if you are, I’m pretty sure I don’t want to know you) then you do for people with disabilities what is required, the same as you do for everyone else. As you would want done for you, should you become disabled. If you are fortunate enough to have a body that works reasonably well, and a mind not hampered by injury, then you are not just “normal,” you are incredibly fortunate. And with that good fortune comes the responsibility to care for those not as fortunate as you.
When I have to park on the far side of a parking lot, and I walk back past the empty disabled slots, I know this is the moment when people scoff, frustrated, angry even, that they are inconvenienced. I know this is when people hatch plans to “work the system,” borrow their relative’s disabled placard, trick their doctor into authorizing one for them. There is an estimated 50% fraud rate in disabled placard use. To be fair, I never confront people in parking lots because I am well aware some legitimate disabilities are not visible at first glance. But I do think about our old van, and my father hauling Erik’s chair out of the back, wheeling it around the side, and helping him into it, and I’m glad the parking slot is available for another family. I know that is one less challenge they will have to face that day, in a sea of daily struggles. And I’m grateful for my legs that carry me across the parking lot. And those days I’m in a hurry, when I’m late?
I’m even more grateful I have legs that can run.
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