There are things I have learned about myself, recently. Things that have been true for a very long time, but which it took time for me to process as a part of my identity.
Why does it take so long for me to connect my reality with its implication?
Perhaps it is simply another way in which my brain gets stuck.
But I think there are two other reasons. Both are a kind of internalized prejudice.
One has to do with social norms, with stereotypes and stigmatization and fear and contempt. If these traits are part of my identity, then I am Like Them, and They Are Different and They are Bad and I am Not Like Them.
The other is an internalization of the refusal to respect marginalized people’s self-definition and self determination. If Those People cannot define themselves, and I cannot define myself, then I certainly cannot define myself as One of Them.
(Note: This is the commentary from the link to my “Why I Boycott Autism Speaks” post. Something about the format of my blog made it really hard for me to read, though, so (under the assumption that some other people would have difficulty reading it also) I decided to put it in its own post.)
Since I posted about why I #BoycottAutismSpeaks, they have posted a “call for unity”–another attempt to silence the voices of the Actually Autistic people they claim to want to help.
I want to make an addendum to this post, however, because I mention my experiences with meltdowns, and I don’t want anyone to take what I say about my meltdowns as evidence that being nonverbal is The Worst Thing Ever. Being nonverbal sucks for me, but its not because there’s something inherently wrong with being nonverbal, and it shouldn’t be taken as a commentary on the experience of other autistic people. It sucks for me because most of the time, I’m not nonverbal. Verbal and written communication are my main methods of communication, and so far I haven’t been able to substitute written communication during the periods in which I am nonverbal.
When I become nonverbal during a meltdown, it’s scary. All of a sudden I can’t communicate, and the people around me are getting increasingly frustrated by that fact. That’s what’s so hard: not being able to communicate.
Communication seems to be a big thing for Autism Speaks–they talk about how autistic people are cut off from their parents/the world, and it seems clear they consider being nonverbal to be a mark of being “low functioning.” But there are plenty of ways for people who are nonverbal to get their thoughts and feelings across, even if finding one that works can be a difficult process, and even if those ways aren’t foolproof. The thing is, communication isn’t a one-person process. In order for autistic people, nonverbal or not, to communicate, you have to actually listen to us.
And if Autism Speaks really wants to help Autistic People, they need to start doing just that.
Trigger Warning: This post contains a very personal account of my experience with doctors and ableism which could be triggering. It also discusses gas-lighting and experiences similar to it.
Image Description: The above image is a banner for Blogging Against Disablism Day, a 5×4 grid of pictures, in various colors, of the type used to represent people on signs. One has a cane, and one has a wheelchair. The image links to the Blogging Against Disablism Day page.
Recently, I was contacted about Blogging Against Disablism Day. I knew right away that I wanted to participate, but what to write about? Certainly I’ve had personal experiences with disablism, or ableism as it is sometimes called. But what specific type of ableism did I want to talk about? There are so many different ways that ableism presents, the institutionalized and the interpersonal, against the physical, the mental, and the developmental, the visible and the invisible. There is internalized ableism and external ableism. There is fear, pity, disbelief, simple hatred—but what should I talk about? What have my strongest, most memorable experiences been with?
The answer came fairly quickly. Doctors. After all, my experiences with doctors actually seem to have caused some of my disabilities—certainly exacerbated them. Most of my experiences with ableism have been with doctors. For three years, most of my experiences period were with doctors. Once I finished writing this, I realized it wasn’t just doctors, but denial. Denial of my experiences, my voice, my agency.