(to anyone who reads this - I was speaking on a panel talking to future teachers tonight about what it's like growing up the brother of someone with special needs. I ended up scrapping this whole thing and just blabbering for fifteen minutes instead, but this is what I had originally planned on saying)
My name is Andrew. I'm an Aries. I enjoy acting, composing music, dance, a good film (and sometimes a particularly bad one), and being Sam's older brother.
My little brother Sam has special needs - though little is probably not the right thing to call him these days, weighing in at 5 foot 4 and 125 pounds. When people ask me if I have any siblings, ordinarily, I tell them, "yes. I have a younger brother - he has special needs." They get awkward and ask, "what's wrong with him." I tell them, "nothing. but he has Autism-Cerebral Palsy-Kabuki Makeup Syndrome-Cyclic Vomiting Syndrome-and-Congenital Myopathy of Muscle Fiber One." They stare blankly. I smile. They say, "oh."
It's not an easy thing to be the guy at the party who gets asked nothing but heavy questions. Why don't you eat meat? What's wrong with your brother? Why'd you move back to Sacramento?...
I'm not morally opposed to meat-eating, but of the clinical studies I've read a whole-foods plants-based diet is the healthier way to live. But who wants to hear about clinical studies and the affects of animal protein on cancer growth while chugging a PBR and chomping on a burger? And understanding the levels of Autism Spectrum Disorder and how they affect your little brother and his relationships in life is a challenge in and of itself. Then take those conversation killers and put them as two of the central foci in the life of a twenty-three year old, single theatre and sci-fi geek. Yeah - my milkshake really brings all the girls to the yard…
There are infinite, and I mean that with the full breadth of the word, infinite challenges that go along with being the brother of someone with special needs. But keep in mind that, growing up and throughout life, kids (or coworkers) are mean. And teasing hurts. Being different hurts. And so, above them all, there has been one challenge that stands out in particular.
And I remember, actually with extreme clarity, the moment I learned the implications of the R-Word… "Retard."
I was six.
I had gotten into my mom's Isuzu Trooper with my best friend Keith after school. We weren't even out of the school parking lot when Keith and I, in response to the classic, "how was school today, boys?", responded, "Good - but that yard duty is retarded!" "yeah! what a retard!" My mother stoically and benignly said, "boys, retard isn't a nice word." we said, "it isn't? but it just means stupid!" Ah youth! The things a six year old would think, right? But of course, how could anyone beyond the level of a six-year-old's mind think THAT?!
My father and mother are very patient and understanding when dealing with the overwhelming ignorance of the general population. I, on the other hand, am really not. I've been in more fights stemming from ignorant, cruel people mocking my brother and using the R-word than I can count. And I don't mean only verbal fights. My mother once had to physically restrain me from attacking two children in the customer service line at Target who were pointing at Sam, whispering to each other and giggling. I was probably eight, maybe nine.
Now, I'm going to guess that many of you listening have siblings. Probably most of you. I'm going to guess that of that portion who have siblings, probably two thirds have at least tolerable relationships with said siblings. You know, "on a talking basis" at least. This question is for you: when a lover breaks your heart, when a best friend betrays you, when you get laid off, where do you turn? sometimes you just need some sibling time, right? You just want to get together with your brother or sister and talk it out. Have a beer, maybe a trendy cupcake, and talk. I will never have that experience. Sam can't talk. He uses adapted ASL tailored specifically to his abilities to communicate his basic needs and some of his very simple wants. Movies, music, food… He and I shall never share heartbreak stories. He and I shall never be there when the other one falls. He and I shall never help each other move into a new apartment. I will help him because he'll need it.
In a world of takers, it's lonely being an unconditional giver. As a side note to this point, Don Quixote is my favorite book. People take. And take. And take. Friends, lovers, teachers, employers. And, after growing up with Sam for the last eighteen years, I can't not give. It's instinct. Doing otherwise would be asking a Bull to eat veal. There are a lot of siblings who don't feel this way. There are many people my age -- and older -- and younger -- who have rejected their special needs sibling. Ignored them. Shunned them. Pushed the entire idea of their existence away. In the five years I had on this planet before Sam was born, I was taught better than that.
Then again, it's not easy being the eighth-grader who stays after science class and has to confront the "cool teacher" after he's used the R-word in class. It's not easy being the senior in high school who confronts the sixty-year-old "cool priest" who teaches choir after he's made a big joke about a ritardando. It's not easy being the college graduate and professional actor who has to pull much more experienced and popular coworkers aside and ask them not to use the R-word only to have them making a "Retard Joke" five minutes later to the delight of the rest of the cast.
People like Sam and I shall always be on the outside looking in. The difference between him and me is that he doesn't see the ignorance and malice that keep us out.
I understand that I can come off as bitter and angry. I am. I am bitter and angry that my brother has to live in a world of people that not only don't understand him, but have the resources to understand him but refuse to look at them because they'd rather live in ignorance.
I'll tell you another story. I knew a guy. Tall guy. Gay guy. He, no matter how many times I asked him to, never stopped using the R-word. I finally got fed up with it and, trying to restrain myself from a violent outburst, I hit him where it hurt. He said, "why do you make such a big deal about it? It's just a word. You shouldn't care." I responded, "that means a lot coming from a six foot faggot." Everyone around got mad at me. How dare I. How dare I use such an offensive word. Oh - but isn't a faggot just a burning stick? or a cigarette if you're from the UK? No - it's an extremely offensive term. It's degrading. It's objectifying. The N-word, the C-word, the F-word… well, okay, the F-word is different, but the aforementioned F-word. Aren't they just words? Absolutely. But language is what makes humans special. We have thousands of languages verbal or non-verbal, and hundreds of thousands of words in each one. Why we choose to make some words cruel and mock people with them, I will never understand.
Explaining to people that I have to stay home on a Friday night to take care of my brother is hard. Trying to get people to not use the R-word one person at a time is… impossible.
Being Sam's brother is the hardest thing I've ever done. But it's also the best thing I'll ever do. I was at Swabbies - a little biker dive bar slash restaurant with Sam one night to see one of his very favorite bands, Mumbo Gumbo. When we take Sam to a concert, he loves to dance. When Sam dances, whoever's with him gets the workout. We either carry him and dance with him on us, or dance with his wheelchair. Let me tell you, a four-minute song has never been longer than when you're dancing with an extra buck-twenty on your back. During one of my beer-breaks, the people sharing our table tapped me on the shoulder. One of them said to me, "You're the image of Christ." I've had a good laugh at that many times since. I'm not an "Image of Christ." I'm a guy who, at the age of five, had to take on the role of a twenty-year-old aid. Just like my mother and father, I just live the life I've been given and live it the best I can. This is not something I chose. But it is nice to hear a compliment once in a while.
If it weren't for growing up with Sam, I wouldn't be as strong as I am today. I wouldn't have been stubborn enough to compose, direct and produce a twenty-minute musical as my senior project in college. I wouldn't have been relentless enough to create three original short plays about the affect our war in Iraq and Afghanistan is having on our soldiers and produce, direct, design and stage them in my back yard in forty-seven days. I wouldn't have the motivation I have at the gym when I work out (Sam really is the best personal trainer. If ever you need a motivator, needing to defend yourself during a violent, uncontrollable outburst from a fully grown man is it). Sam has been the single most formative contributor to who I am and who I have been growing up. He and I can't go out cruising for girls together. We can't sit up until the small hours of the morning talking through our problems. We can't arm wrestle, or shotgun a beer or play video games together. But he's the only person I know who's never betrayed a friend. He's my brother. I'd do anything for him.