“I always knew I was wired differently”: Empowering Spectrum Identities through Transcending

I always knew I was wired differently but I did not know the cause and I couldn’t sort through my immediate confusion regarding it, to arrive at any answers or even at any hypotheses. For example, I’ve been socially naïve and without the ability to understand and thus participate in, common social rituals. I’ve always had a profound dedication to the study of writing. It began with strong interests in complex or abstract themes as a child, and I wrote poetry throughout my life. I wanted to be a philosopher for a brief spell as a teenager. I went to the library to pick up Aristotle. Though I was disappointed by what I thought must have been a false lead, I read Aristotle’s natural philosophy. I didn’t find what I was looking for in it: a way to approach thought itself and figure out its contents in order to solve the nagging questions I felt every night before bed, as I stared at the ceiling trying to figure out the meaning and purpose of my overwhelmingly enormous mental processes. Being from a large family with so many personalities and options to interact with, I was very much at ease at home. While I enjoyed structured activities in school, I tired and needed to nap once arriving home, eating the snacks my mother prepared for me, and then “veging” out or napping through the late afternoon. Difficulty arose for me in the context of the classroom and the general environment. For example, teasing of any kind between people or threatened violence, respectively, caused me tremendous emotional upheaval and fear of conflict. In school, I was happy for I understood and excelled. My 5th grade teacher sought ways to challenge me. My 6th grade teacher gave me the authority to leave class at any time, and the freedom to leave classes was extended to me throughout middle and high school. Academic work came readily and rapidly to me. I flourished through the efforts of my teachers to guide me along

with my abilities toward expressing my potential. The only opportunity I had for formal intervention was when I was identified for speech therapy. I enjoyed speech therapy because I had the dedicated attention of a therapist, the room we worked in was small and comfortable, and she was a very dedicated and effective therapist. I felt I was special. I quickly remedied the lisp that qualified me for speech therapy for I have the ability to mimic "normal" behaviors. However, that ability has diminished with age. While this opportunity was positive, the fact was that the means by which they school may have been able to identify my underlying differences, were limited. Thus I would go decades with my private sense of non-belonging, emotional disabilities, pervasive depressive episodes, and an increasing sense of restlessness concerning the rights of people facing barriers to full inclusion in education and beyond education. In my case, my quest for answers was complicated by other adjustment difficulties leading to a desire to change what was amiss. Being on the spectrum brings along other features such as cognitive dissonance, depression, disassociation, affective disorders. But it also gives me a verbal ability that goes beyond the range of “normal.” Without preparation, for example on SAT’s and GRE’s, I complete most questions accurately. My GRE score some years back was about 95% without study. Had I studied, I might have scored higher. My verbal ability while strong puts me into an odd bind. I can amass many verbal details, patterns, themes, and sources. But articulation is considerably more difficult. Still and all, I hold a PhD in English and publish my writings of all genres including poetry, prose, scholarship, journalism, etc. I am ill at ease in the conventions of social norms regarding rituals, holidays, gender norms, small and idle chatter, and etc.

What has most mattered to me despite the difficulties, has been the ability to find cultural connections built of love of art and the humanities. I have taken risks, small and large, to intervene in bullying on many levels: adult to child, teacher to student, cliques to individuals, to prejudice and bias in general. At the same time, I’ve often been treated with incredible sympathy, compassion, support, and offered adjustments as I needed them. Sometimes, receiving accommodations triggers my worry concerning my need to be as independent in all I do as possible. At other times, I cave into self-pity over the vexing challenges to being my own person and accessing official understanding of disability rights. By far my identification with others who possess disabilities, is the strongest form of emotional affirmation concerning who I am. For example, other disabled or ill people seek me out through eye contact in busy public places, for friendships, and as a teacher/mentor/advocate/activist. There are many memories of realization of my autistic nature such as when my mother found me crying in agony in my playpen for I’d wrapped my finger in its webbing and twirled and twisted it up so tight, she had to cut it off my finger. I was also very fond of spinning threads or even my own long hair strands around and around and around my fingers in school when bored by the work. Spinning fibers around my fingers eventually taught me to view my finger tips as the way to encode my life through writing and rapid typing. I recall a life-altering experience of intense identification with Rita, an institutionalized woman at a hospital for developmentally disabled individuals where I worked as a teen. Rita did not

possess the abilities of verbal communication, vision, or hearing. I believe she may have also been autistic. Entering her room and without hesitation, I sensed something was wrong with Rita. She and I could not speak, and yet I felt certain she was communicating with me. I heard a voice that had no sound signal pain and distress. I immediately approached her as if by silent command and proceeded to check her diaper. I discovered that she was suffering from fecal impaction. I went to the nurse to report that something was amiss with her elimination. The nurse commended me and told me that had I not realized something was wrong with Rita, she could have rapidly worsened. For Rita did not have the ability to communicate with others. She then assigned me the task of helping her to relieve Rita’s impaction through the use of an enema. I was about 17 years old, I guess. And though it was a rather difficult procedure, I carried out the task with the nurse to my best ability. Rita was relieved, and so was I. Yet, what was the certain connection I felt toward her that allowed me to detect her condition? To this day more than 20 years later, I believe that while I may not have been diagnosed, she and I had similar brainwaves or neural feelings. How to explain it? I can’t. Once I received my own doctoral hood and began teaching and fulfilling my calling to assist others with writing in University writing courses, I became more and more aware of the range and frequency of disabilities in college and University settings. There is a great deal more that I can say on this topic, but for the purposes of this testimony I restrict myself to one goal, which is to explore my formation of an empowered disability identity through compatibility with others who experience symptoms or features of disability. In sum, I wish to stress that identity formation is key for success, independence, and advocacy.