When I finally turned to social media, I found that the recommendations I’d been given for how to care for Edmund were incomplete and ignored the crucial perspective of disabled adults. On Twitter, I connected with disabled people for the first time. I devoured their tweetstorms, blog posts, and articles. I started to learn about the experience of disability. Stella Young’s TED Talk on disability, with all her wry humor, made me rethink how disabled people are both sentimentalized and denied basic accommodations. By reading their perspectives, I saw Edmund in a whole new light.
I heard disabled adults argue that disabled kids need to learn agency and independence rather than compliance. They want to ensure that disabled people are accommodated and receive what they need to live their lives. Many disabled people don’t want to be cured; disability is frequently essential to their identities. This is even reflected in how most disabled people define themselves: They often prefer to be called “disabled people” because their disability is vital to their sense of self, whereas parents often say “people with disabilities” because they want to stress that their child’s disability doesn’t define them.
This may seem like semantics, but it reflects the tension between these two groups. Some disabled people resent that parents, not disabled people, are often the spokespeople for disability issues, because their priorities can be so different. Upon facing a diagnosis for a child that entails disability, parents often want a cure. Failing that, they frequently want their child’s disability to at least be less apparent to the outside world. I certainly empathized with this impulse. As parents, we want the world to readily accept our kids.
But when I read an autistic person describe firsthand how painful loud noises are, I began to understand how urgent it is that I protect Edmund from similar pain. I shouldn’t try to “manage” this behavior by coaching him to tolerate the pain, as some other parents and health care professionals recommended; I should instead remove him from a place with noises that hurt him. When I read some disabled people say that they did not want to be cured, that their disability was a part of who they were, I thought that perhaps Edmund felt that way too and was unable to communicate it. Julia Bascom, executive director of the Autistic Self Advocacy Network, writes movingly of the fear and pain of being forced as a child to stop flapping her hands: “Not being able to talk is not the same as not having anything to say.”