This piece was written by my friend Diana Pastora Carson of Ability Awareness. Diana's brother, Joaquin, is autistic. Currently, Diana and her family are actively pursuing the important process of transitioning Joaquin from institutional care to his own home, and addressing all of the community involvement pieces that go along with that.
This essay was written after one of many appointments that are part of that process, an appointment that occurred yesterday. This piece is also to be included as a chapter in Diana and Joaquin's upcoming book, "A Walk With Joaquin".
By Diana Pastora Carson
I watched under emotional anesthesia as the teacher pulled out a bright, foam peg board and asked Joaquin to show us how well he can work.
Peg Board. Really? You mean we’ve come 100 miles for this momentous occasion, the first official visit from Joaquin’s community support staff (the people who are going to take him away from all this madness and facilitate him having a real life, one with meaningful experiences, choices, and enjoyment) only to walk into a noisy, windowless room where a good-hearted, but clueless “psych tech” actually boasts of Joaquin’s ability to put large, colored, plastic pegs into a peg board for no apparent reason other than to seem productive and to be compliant?
In this second millennium, the absurd and unbelievable scenario where a professional in the most highly funded state agency working with people with developmental disabilities offers a peg board to my brother, a 40-year-old man who loves walking, riding bikes, and socializing…not peg boards, defies all reason. In what seemed to be slow motion horror, I watched, and even encouraged Joaquin to sit down and try, knowing he would understand what I was doing and would forgive me as soon as we had humored his instructor. I just wanted to get it over with and show a cooperative spirit so we could get the hell out of there.
The poetic ending of this story is that Joaquin refused to perform the task. He sat down at the table in front of the peg board, wrinkled his nose and looked at us as if to say, “You’re kidding, right?” and then put his hand on his head as if fighting off a headache. When prodded, he shook his head, clearly communicating that this was not his idea of fun…or life. “Okay, Joaquin. You’re telling us that you don’t want to do this. It’s okay,” I assured him. It was actually great!
But what if he HAD done it? Would it have meant that he was content? Or that he had finally grown to be compliant after endless years of “treatment.” Would it have meant that he wanted to live in an institution? Or would it have meant that he knew no alternative?
But he had not complied. Did Joaquin know that his act of committed defiance was the perfect metaphorical statement of empowerment? Did he understand that he was actually saying, “I am my own person and I want to live my own life?” Did he know the implications of his action? In my mind, he understood, and he’s a badass genius.