Sam and I marched in the Disability Pride Parade this year. We helped carry the banner for the Autistic Self-Advocacy Network (ASAN). Motto: Nothing about us without us. And Sam was proud. I had not realized how much she enjoys chanting slogans, even when her compatriots remain silent. One of the things I appreciate—but do not understand—about Sam is the way her own energy and enthusiasm are neither stoked nor diminished by the energy level of the crowd whose solidarity is supposed to create their momentum. They chant, she chants. They walk in silence, she still chants. For political scientists studying social activism, Sam is a real outlier.
I cannot tell whether she got much out of participating in the parade, but for me it was a small watershed moment; I attended! Usually I work to integrate Sam into the neurotypical community. If she is in some group for kids with social challenges, I congregate with the neurotypical parents in another room. At this parade, though, I was the only NT, the outlier within ASAN.
Participating was my idea. Having Sam gain a stronger connection to “her” community seems like a good idea, and even though she did not speak with the other marchers, I think she had that experience to some extent. She enjoyed carrying the banner and was probably relieved that no one expected her to engage. I, however, was quite uncomfortable. The members of ASAN are not a chatty group, to put it mildly. I tried a variety of conversation topics, but nothing took hold. At one point I walked over to greet a different group whose members used wheelchairs. Words! Sentences! Facial expressions! I felt like I was among long lost friends, even though I’d never met them. Then I returned to ASAN and scrounged inside my soul for some Daoist complacency. Remember, I reminded myself: Not everybody needs words to feel connected. Not everybody needs to talk. Not anybody came here to make me feel welcome. Just enjoy the smile on Sam’s face.
I’ve written before about the concepts of horizontal and vertical identity. Vertical identity is the (largely cultural) features of ourselves that we pass on to our children. Socio-economic status, geographical norms, food preferences, academic expectations and religion are frequently components of our and our children’s vertical identity. We recognize and understand these facets of our children’s identity. They are familiar, because they are also part of ourselves. In my family, the joy of solving math problems is part of this identity, as is a severe distaste for mayonnaise.
In contrast, horizontal identity is the aspects of our children’s identity that we do not share: LGBT culture for straight parents, deaf culture for hearing parents, college life for immigrant parents who did not have the same opportunities as their progeny, and the adoption experience for parents who were not themselves adopted are all examples. The autistic experience for the “neurotypical” parent (She says with a bemused smirk. No one in high school would have described me as typical!) is another example of a horizontal identity. I neither understand nor feel comfortable in this world where conversational language is more a burden than a pleasure. What is better than hours of shared confidences and laughter with close friends?
On reflection, celebrating disability pride in this parade was as much a coming out party for me as it was for Sam. I may write fluently about autism, but for years I’ve recoiled from the idea of participating in this parade. Perhaps I kept quietly hoping that we would reach the point at which I could say, “That’s not really her world; she is too well integrated.” But autism is an essential part of her identity, and it is time that I start figuring out how to feel comfortable, not only with the concept, but also with the people of her community. She is almost an adult—legally at least. This really is her world.