During my first thirteen years, for the most part, I was unable to communicate clearly with the neurotypical world. I was diagnosed as severely mentally impaired with the ability of a baby in its first year of life. People suspected that I was smarter than I let on, but expectations were very low. I was taught skills, not information; any communication strategies were need-based. My behavior was undisciplined since I was not thought to be responsible, or I often was misunderstood when I tried to use behavior to communicate.
For me, all of this changed after I was introduced to facilitated communication (FC). At age thirty, after many years of typing, I am a college student, published writer, autism advocate, award-winning videographer, and former volunteer for the Obama campaign. Yet, for the majority of people I meet outside disability circles, I appear to be the infant-brained, incapable innocent that I haven't been since babyhood but that I played as my social role until I was a teenager. This is the stereotype that plagues me. Most of the time I fight it and correct the mistaken assumptions of people who interpret my atypical mannerisms as indicative of low intellect, but there are times when I don't and when I allow myself to appear disabled or even exaggerate and "diss" my ability.
Let me look back in time to the point where I crossed over to the talking world. It quickly became a fact of my life that the ante was upped: having to communicate causes your life to become much more difficult, even while it relieves frustration, dampens loneliness, and gives you more control over your life. You are under increased pressure to prove your intelligence, achieve more, participate even when you're not interested, grow up, be responsible, put others' needs before your own, play social games, and conform. I remember that only three months after I began using FC, in what was my longest conversation at the time, I felt ambivalent about leaving my easy life and accepting the demands required of those who are intelligent and communicate. My parents were going to meet the parents of a boy on the autism spectrum who were interested in FC. I had been asked whether I had anything to say to the boy. I replied, "I DO NOT WANT HIM TO … IN LIST (enlist) IN A NEST OF LIES. … TELL HIM I NO (know) HE IS TOO SMART TO TALK TO THEM. I AM STUPID TO TALK TO THEM." This was hard for my parents to hear. Already I was aware that communication had not magically changed how most people viewed me, even though I had to act differently toward them. Furthermore, I was becoming aware that I was losing a kind of purity by dealing in the hypocrisies and white lies accepted and required in social interaction. We all become complicit once we participate in society. There's no turning back once you join.
Mostly, I have matured in my understanding of social complexities and my youthful ethical shock has been tempered with the spoonful of cynicism that we all need to help the medicine go down. Yet there is a remnant of my pre-FC, infant-like self, which I characterize as "Babyliss," that sometimes rears its solipsistic head — a regressive, frightened child who cannot cope with adult pressures; a nihilistic impulse that feeds on my insecurities about being autistic and trying to be equal to neurotypicals. I am aware that the appearance of Babyliss thoughts and behavior is related to chemical spikes in stress hormones and a default repositioning to my oldest thinking patterns and behaviors, which are rooted in fight and flight responses. (Sometimes Babyliss behavior is an indication that my seizure medication needs to be readjusted.) However, the interesting thing is that I watch myself become a nasty caricature of all the aspects of my (dis)ability that I usually am not: acting childish and stubbornly illogical, uncooperative, as hyperactive as a squirrel, uncontrolled, self-absorbed, rude; lying to others to obscure and control the truth, lying to myself that defiance is power; and occasionally becoming abusive toward myself and/or others. I make myself less than I am.
Babyliss might appear when I am humiliated or fear humiliation; like a self-fulfilling prophecy, he will expose and enact negative feelings that are overwhelming. He may possess me when I feel I have no power. Lately, in a mild form, he has stalked me as I train new staff and balk at relying on them to assist me as my independence increases. Babyliss is the worst way in which I collapse under pressure and "live down" to the lowest of low expectations — the low expectations of my fears, often at odds with the supportive ones of the people around me.
In studies of race and gender theory, there is a concept known as "internalized oppression," where individuals in a subordinate social group apply the cultural norms of the dominant group to themselves, devaluing themselves even though they do not believe in the external inequalities of the social system. I think it's very difficult for anyone who has been repeatedly stereotyped to escape fully society's pressure to conform to stereotypes, nor (when our resistance is fragile) can we hide from our self-doubts that whisper that the negative things people have said to and about us are true or that somehow we deserve to be second-class citizens. I think Babyliss is my internalized oppressor.
On the other hand, there are times — with strangers and people who don't matter to me — when I might choose not to reveal my able self and, instead, fly under their radar. I'm fortunate. I can communicate, and I nearly always have someone with me to facilitate my typing. Still, I don't always insist on being presented as an equal either in my own words or by the person who assists me. Sometimes it's not worth the trouble: I'm too tired, the explanation would disrupt my focus, or the person seems incapable of understanding the complexity of who I am. It's not fair to either of us, but I don't always want to be responsible for educating the world. Sometimes I hide my true self: I am furious and I freeze up, I feel insecure or humiliated and don't want to explain myself and then not be believed and be rejected, or I am testing someone I don't yet trust and am waiting to see if the person will assume or detect my competence. Once in a while, I'm embarrassed to admit, I play along with an assumed stereotype to get something, but usually it's something like swiping lovely rubber bands at Whole Foods to play with, knowing the cashier will say, "That's okay," when my stepmom gives me a reprimanding look. The consequences of adhering to the stereotype are never very satisfactory. At best, I get a cheap and easy reward, or I feel annoyed but still there's a sting. More often, when I conform to the stereotype, I feel depressed, not in control, and in doubt of my abilities. I get angry or frustrated and my subsequent behavior reflects this. I limit myself in the moment. I risk opportunities in the future to be taken seriously. I make it impossible for someone to know me, or I feel cut off and isolated. We all conform in different ways around different individuals or groups, and, I think you will agree, it's always at a cost to ourselves.
In contrast, there are pressures to disprove stereotypes. Some of these come from our supporters, who are enthusiastic that we succeed and pioneer for others, but I think the greatest pressure comes from ourselves. I want to surpass not only the low expectations of the stereotype, but (I confess) also to equal or surpass expectations for the average neurotypical. It's forever annoying to be underestimated, yet it's wonderful to open people's eyes to their own prejudice and change their attitudes about autism and non-talkers. We do this as FC users. We do it through inclusive public-school education and by attending college. When we gain employment, share our creative and artistic talents, and give expert advice about our (dis)abilities — by speaking at conferences, publishing articles, serving on committees, educating agency staff and college students in fields that will serve us — we expand the range of people's acceptance and accommodations of differences in social behavior and types of interaction.
More personally, I see how I surprise people just by being who I am, for instance, with my sociability. I'm told if there had been a world-class competition in flirting in Beijing, I would have gotten the gold medal. I'm an unabashed extrovert. I am empathetic. My emotional attachments are deep. I refuse to allow Temple Grandin to speak for all people on the spectrum about autistics being comfortable with celibacy; I want physical intimacy and sex (recognizing that I may need guidance from a therapist or a gentle, patient partner to help me overcome my sensory sensitivities). I want romance and would love to be married. Like many others on the spectrum, I defy studies that say our imaginations are faulty or non-existent. Read my poems and stories and those of my sister and brother Auties and Aspies; look at our art, hear our music, watch our videos, laugh at our humor, and let our fantasies and dreams show you the real faces of autism.
Breaking stereotypes is rewarding, but it's stressful, too, sometimes straining our courage. However, I know that for me the consequences of departing from the stereotype make a difference for myself and others and change the ways we are treated; cause me to feel powerful, equal, and in control; allow me to express myself; sometimes lead me to jobs for which I'm paid; cause me to focus on what I can do, rather than on what I can't; introduce me to interesting people; and connect me to a larger community. I become myself and more — greater than I imagined myself to be.
I may not have a choice as to whether or not I am stereotyped externally by individuals or social systems, but I can address Babyliss and internalized oppression and make choices about how I present myself — maybe not sharing who I am all the time and with everyone, yet daring to be a non-conformist enough of the time so that the stereotype starts to crack and may one day shatter.