sometimes i have a lot of feelings about my little brother
a lot of sadness, a lot of memory, a lot of confusion
[potential tw: abelist language]
i am, for the most part, of a clean bill of health. i’m pretty significantly overweight; my left ankle is useless; i have kidney/bladder problems; i have migraines; i’m mostly deaf in my left ear. I am, by all means, completely capable of being independent and the like. I find that my mental illnesses incapacitate me far more often than my physical ones
I grew up with a disabled little brother. disabled from birth—it was the hospital’s fault. i never understood what happened, not really. i’ve read the diaries my dad kept at the time (i was five) so i have a vague idea, told through the lens of a very angry father, of what happened to my little brother during his first year of life. basically, any horror story you can think of about how america and hospitals treat disabled children, coupled with the fact that it was the late 90s, and finalized with a nice big bow on top of it all with “(sober currently) DRUG ADDICT PARENTS” to his story, and you’ve basically got the gist.
I regret, so much, not having gotten to know him when I could. I try not to blame myself too much; I was five when everything happened, and then all I really knew was that we were being flown all over the country to visit doctors, and my parents almost got divorced, and the lawsuit against the hospital took four years before they finally folded because of the disastrous amount of evidence we had against them. For a lot of my life my relationship to my brother was inextricably bound to the period in my life where I was hopping around foster cares (because, the NJ child protective services working at their finest, decided that his disability was due to my parents smoking meth in front of him—a flat out lie—and they were deemed unfit to take care of either of us). They were okay times for me, but also times where I had a lot of nightmares about DYFS breaking in, DYFS grilling me, DYFS trying to get me to confess against my parents, when all I really wanted was a Happy Meal and to sit on my Dad’s lap and read Harry Potter. So, getting to know my little brother was hard, especially because I didn’t start trying until he was 10. And now, he is only in my life sporadically.
There have been so many times this summer when I’ve wanted to make posts about him, where I’ve wanted to seriously get down and dirty and tell the story, or just cry because I haven’t seen him in nearly two years. I feel immense guilt because I am healthy And He Is Not, although I am damn sure that he is twice as happy as I am, which makes me very happy indeed.
It’s weird to be the older sibling of a disabled younger sibling. The roles you take in the family, both nuclear and extended, become strained and squished and confusing. You fit all of the archetypes and yet none of them, and whether people are thinking it or not, you find yourself praying to God to switch places. Not for the attention—because of the guilt. I came out normal; why didn’t he?
Sometimes I see shit that people put up on the Internet about kids with disability, ranging from Downs Syndrome to what-have-you. “I can count to potato”; the phrases “derp” and “herp” (although they were, admittedly, so hard to purge from my daily speech); “I control the southern hemisphere”; I mean, it goes on.
I laugh at these images sometimes, when I can relate to them, when I feel like I have the right to laugh (although I very frequently wonder whether having a disabled brother is actually a good enough excuse to laugh at the “Southern Hemisphere” picture). But to be honest, seeing abled bodied people who, to my knowledge, don’t know anyone with the disability that is being mocked (or at least someone who is disabled) laugh at these pictures and these memes makes my skin crawl a little. I don’t know how I feel. On one hand, I find the picture funny, why can’t others?; on the other hand, I suppose I feel that I have “earned” the right to laugh at these pictures, as I have personally seen my little brother being modeled in many of the devices that people tend to laugh at and yes, yes indeed, they are just as funny in real life as they are online—but I’ve also experienced staying up for two days straight while pacing a hospital corridor, going to school and rushing back, I’ve experienced my brother having seizures that have lasted up to two hours before we called the hospital, I have carried him from the floor to his wheelchair and back so many times, I took my brother and drove him to safety when my parents were on a drug binge. There are the weird, stupid, and funny things that happen, like when we find a new sound that makes him laugh and boy, does it make him fucking laugh, just like there are the small, quiet, and horrifying things that happen, like when his seizures make him stop breathing, or flashbacks to various nights when I was five, that just…give perspective.
What I’m trying to say here, I suppose, is that yeah. Shit’s funny. I’m okay with you laughing at it, I’m okay with you laughing about it. It’s not my decision to make, as I’m not disabled. I don’t even speak for my brother. I only speak for myself, and with the experiences I have had, sometimes, just sometimes, I wish people would think differently about it.
Instead of laughing at the “Southern Hemisphere” picture, isn’t it really fucking cool that a device was built so that children with cerebral palsy—who often are not able to sit up on their own—can use the bathroom by themselves? Have you ever given a single thought to how children with cerebral palsy go to the bathroom when they don’t have this type of technology? (Hint: it’s adult diapers well into your teens, diaper rash, and someone who cares enough to change the diaper). Have you ever thought about the simple difficulty of giving a slippery, dirty 12-year-old boy a bath, when he is blind and has severe cognitive disabilities? (Hint: you don a bathing suit and sit in the tub with him, carefully scrubbing away, and pray that you have the energy, time, and resources to give the kid a bath at least once a week.) When you’re laughing at these pictures, have you stopped to think about how life changing the things presented are, no matter how ridiculous they may seem and look?
I don’t mean to be on a soap box. I’m not trying to preach, and I’m sorry if I am coming across that way. I just think that sometimes tumblr is incredibly on point with the rhetoric surrounding disability (esp when its written/given by someone with the disability in question, etc) and sometimes I find huge gaps in tumblr’s knowledge that extend to people like my brother, like the kids in the memes, who may be so cognitively disabled that they will never reach independence. In our push to remember that children and adults diagnosed with autism and Downs Syndrome are more than capable of and deserve to be independent (something that I think is super important), I just hope that we’re not ignoring the kids who don’t have these opportunities. You see these kids in malls, at amusement parks, all over, and I wonder what you wonder and think.
If you saw me pushing my little brother in his wheelchair, his little body hunched over so that he could see the slightest bit (and also because sittin’ up is hard, son), what would you think? What would you think? What if he had white casts on both of his legs while in the wheelchair? What if you heard him communicate? What would you think? Would you laugh? Would you laugh?