My Brother. The ‘R’ Word.

autism awarenessin solitude in my room/avoiding zombies around me. i’m losing my inspiration/write a scripture no 1 listens. a lower frequency field/the higher one i can’t find it/born with an indigo soul, though slowly losing my glow.

My brother wrote this some years ago. An indigo soul… slowly losing its glow. The gradual extinguishing has taken place since he was a little boy.

About my brother…

He is in his mid-30’s. He has Non Verbal Learning Disorder. He has Asperger syndrome. He has an Arachnoid cyst the size of a golf ball in his brain.He has brain lesions. It’s suspected he also has a type of Marfan’s Syndrome and Schizoid personality disorder. As is the case in many teens with a form of autism and learning disabilities, my brother turned to drugs and alcohol at fifteen years of age and has battled substance abuse issues ever since. In and out of rehab, he fell off the wagon time and again. Of course, drugs and alcohol mask the pain. You aren’t inferior when you’re high. The high allows complete avoidance of the zombies of mental development issues and a society that says by now he should have at least a forty-hour a week job, a four-year degree, a wife, two kids, two cars and a house. By this metric he isn’t good enough. And he never will be. He’s been in jail. He’s been in prison. He finished high school there since he dropped out in the tenth grade. He is a felon; a criminal, if you will. He is slightly paranoid, some days more than slightly. Some would say a drain on society. He’s been called hopeless. And, yes, because of his developmental delays and diagnoses, he is in fact by all intents and purposes the ‘r’ word.

Tell me, how does that make you feel? How did you react to the title of this post? Were you angry? Did you jump to a conclusion and mutter, “What a bitch,” to yourself? Did you laugh because you thought this would be a sarcastic post poking fun at my sibling? Even Adam Sandler has “The Retard Song”, right?  I mean ‘retard’ is just a word after all. Or so I am told. So is nigger. So is faggot. Most would have a hard time with the sheer blatancy in which I’ve just put those words out there. Yet, “You’re such a retard,” and “That’s so retarded,” slide off the tongue so much more easily for many of us. Examine the etymology of all of these words. None, by origin, derived from the ugliness they are today. They were warped and shaped into the epitome of deprecation over time. And somehow we accept this. We dismiss the sting by saying, “They’re just words.” Well, I would tell you they aren’t. They are not just words to those living them. They are real-life. And sometimes, “real-life” isn’t so easy. And for too many, neither is compassion or empathy.

My brother? He is also brilliant. His ability to write and to retain information is astounding. I’d venture to tell you he could rival some college professors in his knowledge of Egyptian history. He is also funny when he wants to be. His impressions of various people have left us with belly aches from laughing so hard. And still, behind his eyes there is ever-existent pain. He always feels likes less. You can see it, when he is brave enough to look you in the eye. Most times he he can’t bring himself to, though. Looking down hides the shame of what he thinks he is.

You see, he was called stupid by the same teachers who praised the “brilliance” of his sisters. From a young age my brother was led to believe he is, indeed, stupid; just a retard like he was told so many times from those who “must know”. So he acted that way. They gave their so-called expert diagnoses. They all gave their opinions. But not one recommended solutions. Not one offered encouragement. Not one cared. They collected a check, referred passed him off to the next clinician and the cycle went on for years. Until he became an eighteen year old adult without an education and with a rap sheet. Then the cycle stopped for them and started for the State. A state who doesn’t give a damn about someone who has wanted to take his own life and wished for an end. Yes, Florida and all of your departments, I am calling you out.

And now he is a grown man who is clean and sober for a year now. A grown man who is hard-pressed to find a second chance in a society that believes the mistakes he made between the ages of eighteen and twenty-one years of age should be carried with him the rest of his life. Apartment searches are greeted with baited breath and wasted dollars instead of excited anticipation. Will they accept a felon living among them? Most answer, “no.” He has a humble job in a restaurant and still wonders if he is good enough for even something he calls so simple.

And what of resources for those like my brother? Universities don’t want to spend dollars on research for those already damaged past what they have deemed the point of no return. The focus is on children. Puzzle necklaces and blue t-shirt awareness campaigns did not exist when he was a child. Shaming existed. So-called “tough love” existed. There was nothing loving about it.

April is Autism Awareness Month and I want to be clear that while I believe in the cause, the timing of this post is a complete coincidence. Inspired by a video on Facebook and posts by the dozens of people who stand by their assertion that using the words retarded and retard in jest is perfectly acceptable is why I have written this today. My family has been aware of what “retarded” means for thirty-six years. My brother’s diagnoses were merely guesses at first – there were no names for what he had, but the weight and pain of the struggles were always there. Most especially for my brother whose face I was afraid to share on my blog in fear of those out there who would take it and put it on their trolling sites or Facebook pages to make fun of him. In fear of  those who would pity him. In fear of those who would judge him. But most of all, in fear of those who have a retardation within themselves that allows them to act out in such hate. Those people? Not worthy of saying his name.

He will never be society’s definition of normal. He will never be a heart surgeon. He will most likely never get over things like the fear of flying, evil spirits trying to zap his energy or the insecurities that guide his days. He will never accomplish some of the most basic things in life for you and me. He will never be a lot of things, but in spite of all that, most importantly and above it all he will never be “just a retard.”

No. First, foremost and always he is MY BROTHER.

With an indigo soul

autism awareness

(For those wondering, yes, my brother gave me the okay to write about him).