D.J. Savarese, My Friend, Our Ally in Disability Rights

D.J. Savarese

 

I am a lucky man. Although I bear the emotional scars of a tough childhood—a disability childhood, one with bullying, cruel teachers, lots of loneliness—I have had the startling fortune to meet magnificent people throughout my life. These people are like the shine of fish darting in summer. They come out of black water and the heart no longer feels alone. One of these fish-shine people is D.J. Savarese, the son of my friends Ralph and Emily.

I first met D.J. in the winter of 2007 when I traveled to Grinnell College to speak at a disability awareness event. I had already read the memoir Reasonable People by D.J.’s father—the last chapter of which is written by D.J. himself. So I knew that D.J. had been given up to foster care as a small child, had been abused, (read “profoundly”) and had even been labeled as retarded by the “system”—all because he is a non-speaking person who has autism. At Ralph and Emily’s house I settled my guide dog on the rug, accepted a glass of Cabernet, and started talking to D.J. who, sizing me up, (he’d read my own memoir Planet of the Blind) asked me if I had fear of the future. Talk about getting to the point! D.J. had smuggled real words across the border of the dead. “Jesus,” I thought, “who needs to read James Joyce?”

 

See D.J.’s video tribute to Harriet Tubman…click here…

 

 

Like most literate people I love being in the company of a fast mind. I saw I was in a no bullshit zone with D.J.. Human tears are occasionally the same thing as spectacles. I knew that. And the man next door is a cold sphinx. I know that. And the church bells are filled with the dark water of human history. But D.J. was asking me to tell the truth, did I in fact have “future fear”?

“No,” I said. “I have discovered that wherever I go there are good people. When I travel alone in New York City I meet good people. There are more good people in the world than bad ones.”

In my mind’s eye I was thinking of New York, of how many times I’ve walked there and like those fish of summer good people have helped me. I knew that to the best of my ability in this game of fast conversational chess I was telling D.J. the truth as I know it.

What I was endeavoring to tell him—without any bullshit—is that one can live a marvelous life with a disability. That life will open before you. It really will. It does. I think I also said something about imagination—that it’s a good thing to have but it’s almost always wrong when we think about the future. (An insight that took me years of therapy!)

In the years since I first met him I’ve seen D.J. just being a kid which means being richly alive: jumping with my best friends (and my wife Connie) on a trampoline the size of Rhode Island, taking in the sights in Iowa City, (where people with green hair walk on their hands on downtown sidewalks, where a man in a full body chicken suit patrols the street corners giving out fast food coupons). I’ve seen D.J. perform on stage at his high school with a troupe of his classmates—together doing a piece about understanding autism. I’ve seen him lose his shit in an Iowa City cafe because he was tired and he was with his parents and he just wanted to get away. (As a teenager I ran out of two restaurants when I was with my parents. I knew how he felt.) I’ve seen him type rapidly on his talking keyboard and produce poetic prose that most writers would sell their souls to produce. (“Dear Dr. Faust, can you please call Mr. Satan and ask him to make me neurologically diverse? Thank you. Sincerely yours, “The Academy of American Poets”)   

In a recent double issue of Disability Studies Quarterly D.J. wrote the following passages about being a neuro-atypical writer. I’m leaving out his opening paragraph in which he points out that despite his appearance on CNN with Dr. Sanjay Gupta, some of his high school classmates still thought he was a person who couldn’t be communicated with:

“Recently I surveyed some of my close friends and discovered that most people aren’t sure how to talk freely to me, and I greatly decided to use their questions as the basis for this piece. The first question people freshly asked was why I sometimes have someone hold the pencil while I type or write. The answer is that the person fearlessly makes me feel safe by helping me regulate my nervous system. The adult helps me not to greet the kids directly. If I greet them directly, I get over-stimulated, and my feelings grow so strong that holding them inside is impossible. I desert reason, and my body repeatedly begins to flap or reach freshly toward them. I love greeting kids, but it can cause me to desert self-control temporarily. Another reason why I use a facilitator is to help me focus. The Frees [speaking people without autism] who understand me know how to hear my dear self. They greet my dear self and free me to respond. Treating me as free, they tell me what to do until my breathing feels deep and slow, and my fingers and eyes can once again communicate with each other, so I can type my thoughts. Years of inhaling voluntarily greet hope that I can regulate my own sensory input and hold myself in control. When I was only able to exhale voluntarily, I had to rely completely on my mom to help me fold up my fear and relax. This was frustrating and fearful for everyone, including me.”

“Do the facilitators control my hand? No, they do not control my hand or tell me what to say. During his interview with me, Dr. Gupta reminded me that some controversy surrounds facilitated communication. I told him at the time that I knew about the controversy, but no one had ever doubted my words. Because I learned to read along with my classmates in regular education and pointed independently to words spread out in answer banks, my teachers were able to see me learn to read and write. The use of lots of different facilitators early on also assured people that I freely communicate my own knowledge, thoughts and ideas. At school I now take courses like chemistry and Spanish that some of my facilitators, including my mom and dad, know nothing about.”

Let’s be clear: D.J. Savarese is a free thinking, autonomous, superbly imaginative young man. The “anti” Facilitated Commu
nication crowd likes to imag
ine that all people with non-speaking autism are the same—that in effect no diversity exists within the disability—another way of saying that the disability “defines you” which is of course one of the oldest ableist assumptions around. Let’s be clear: not all non-speaking autistic people can read and write with the originality and richness of D.J. Savarese. And by turns not all visually impaired people can write the way I do. And not all blind people can use a guide dog or find their way around unfamiliar cities. Disability—all disabilities—are a diversity “tent” and it’s important therefore to celebrate the accomplishments of each individual and to see them for who they are. That this remains a radical proposition in our time is hard to fathom. In my dream—a recurring dream—it’s impossible to know who is the teacher.

Here’s D.J. with Sanjay Gupta:     

http://www.cnn.com/video/#/video/health/2007/11/21/gupta.amanda.inspires.others.cnn

Today D.J. is getting ready to graduate high school and attend college at Oberlin in the fall. His journey has been both admirable and profound. His father Ralph has written a tribute at the Huffington Post which I urge you to read:

http://www.huffingtonpost.com/ralph-james-savarese/easy-breathing-autism_b_60897.html

 

D.J.: when I was a kid I was so lonesome I used to go to the cellar and talk to the crickets who lived in an abandoned stove. I loved those crickets. But I love you even more, dear friend. Mazel Tov!

 

S.K.