Nick Pentzell

THE WHEEL TURNS

"Wheel! Of! Fortune!!!" Everyone thought I loved the spinning of the wheel–and I did: the whirring blur that slowed to a clackety-clack of colored segments–but this wasn't what kept my nose to the television every weekday night. Letter by letter, words were revealed, more gorgeous than Vanna White who smilingly lit up my mind in vowels and consonants.

I've heard it said that a fascination with Wheel of Fortune and Jeopardy are ways to spot latent intelligence in people diagnosed as lacking it, a clue that professionals began to notice after the film Rainman was released in 1988. Perhaps I have Raymond Babbitt, Dustin Hoffman's character, to thank in some ways, because by 1991 the special education teachers in my Severely Mentally Impaired classroom were paying attention to their hunches that I had depths unplumbed.

I was diagnosed as autistic, mute, and mentally retarded (still an acceptable term at the time). In spite of my age of thirteen, I performed and tested at the IQ level of about a six-month-old on examinations I was given, although I had no formal means of communicating my answers. In contrast, there was a spark in me that suggested humor and intention and–mysteriously–things happened at school, such as a teacher finding a puzzle all put together, and me staring out the window, when she returned after leaving me alone for a few minutes; before she'd left, I couldn't work the pieces, even with her help. They'd tried introducing me to PECS, a communication system where I was supposed to touch cards that had stickmen drawings with words underneath them, but the results were desultory.

Things changed one day in October when my speech teacher brought out an alphabet board and started pointing to letters, spelling words: "t-o-a-s-t," "b-r-e-a-k-f-a-s-t," "b-l-u-e" (the color of our shirts). I understood the concept of spelling from Sesame Street. and children's books read over and over to me, so I responded. Soon she helped my fingers to point and pushed back against the wobbles and jerks of my hand, steadying it, but giving resistance so I had to make the movements to touch the letters. I began to use "y" and "n" for "yes" and "no" and my preferred phonetic spellings of words, such as "t-o-s-t." In the months that followed my family learned to support my communication this way, and I added words daily to my vocabulary and eventually (grudgingly) gave up my boycott of the illogical aspects of the English language: the silent "e" endings of words, other treacherous unvoiced letters, and the fickle "f"-sounding "ph."

Elsewhere, I've written about my journey from "special" to "regular ed.," but here I wish to explain how, as I shaped words, words shaped me. Utility was my first interest; I could now ask for things I wanted, and many of my earliest communications were about food. I knew I was smarter than people thought, so I began using complex words to assert this, such as "I need sustenance." "Sustenance." Yum! Now that I was joining the verbal world I wondered why talkers moved their mouths around a paltry vocabulary when there were delicious terms with texture and bite that revealed the character and imagination of the speaker. Unwillingly, I had lived more than a decade with the frustration of being hidden; why did neurotypical, talking-people mask their personalities in dull, generic speech?

Additionally, by engaging in language, inchoate processes of thought began to develop. Words had penetrated my mind before I began to use them, but my memory is of them appearing as aural flashes and in broken-record repetitions of phrases from television or conversations I'd heard that appeared in as uncontrolled a manner as emotional or physical sensations. For thirteen years my mind had been reactive. With communication it became proactive. Now I exercised organizing functions in my brain that had lain dormant; in new and thrilling ways I processed information that my ears and eyes and body took in. I found I was more truly myself when I was focused and communicating. I gained power in directing my life by making choices.

Making choices about what to eat or do was all right, but by choosing the style in which I communicated I gained the power to shape the way others saw me. I've always been exceedingly short for my age. My face is goofily asymmetric, and I have not outgrown childish mannerisms in my emotional responses. Often my body ignores signals from my brain and moves unreliably or unbidden or not at all. My coordination and body postures suggest that my mind is feeble, and people generally think if you can't speak you have nothing to say. Ka-blam!! Take that you doubters of my intelligence, no matter how nice or well-meaning you may be! I am going to blow your minds and shatter your misconceptions with the verbalizations that emanate from my fingertip.

You'll have noticed I am a show off, and I'll admit there is an insecure inner voice that plagues me, denigrating my accomplishments, so I find myself seeking praise to prove it wrong. I am also the son of my father (deceased almost two decades now), a genius (literally) of a man and bold and big as the theatre productions he directed and designed as a college professor. I share his love of wordplay (something my stepmother also delights in) and relish my power not only to amaze, but also to charm smiles and laughter from my audience.

Another, very important part of my sense of power is reaching out from the lonely place I started and interacting with the world. I can respond to what people tell me about themselves, show empathy, have friendships. I can engage in my community. I can be of service. One way I do this is as a "diffability" advocate, discussing my experience of autism. Neurotypicals learn from me, and I hope the insights I offer will help them in supporting my brothers and sisters on the autism spectrum who do not have a voice or the ability to describe and explain our uniqueness.

Yet, even in my advocacy writing I'm marvelously thrilled by how, in evoking images, experience takes form and moves to the music I compose with words, rhythms, and sounds. Language is expressive and graceful in a way my voice refuses to be and my body is not. This is my fortune. I spin in pirouettes of creativity now, having hit the jackpot since I learned to communicate.

 

Nick Pentzell is completing his associate's degree at Delaware County Community College in Media, Pennsylvania. A presenter at disability conferences and workshops, he has written about autism in The Philosophy of Autism (2013), Real People, Regular Lives (2011), Sharing Our Wisdom (2003), and in journals, including Disability Studies Quarterly, AutCom's The Communicator, and The Other Side. His award-winning video, Outside/Inside (2002), has been shown at disability film festivals worldwide.