Turns out, Jewish Disability Awareness Month is a whole month. You didn’t think I would let up, did you? (And since I’m apparently the loudest voice in Indianapolis about JDAM, I guess I’ve got to talk a bit more in any case.)
This past weekend, I spoke at Sunday Assembly Indianapolis about neurodiversity and ableism. (I spoke mostly about neurodiversity.) I’d post the Keynote presentation itself, but 1) I think it still needs work, 2) I want to make sure I’ve got appropriate photo credits in it before posting it, and 3) I’m not a “put everything you’re going to say into the presentation slides” person, because that’s straight-up bad presentation design–see #8 on this list–and that means the slides are actually not particularly useful.
So instead of the presentation slides, you get more of my jawing on at length on the blog! Let’s start at the beginning: how do we talk about difference?
This is an issue I struggle with because Secular Jew, Jr. (“SJJ”), is autistic, and autistic self-advocates are often very negative toward person-first language that is typically used when talking about difference. So let’s start at that tension.
Person-first language (sometimes called people-first language, but I’m a little bit of a grammar snob and think the plural of person is persons, not people) means talking about difference that puts person before difference. In person-first language, one says “s/he is a person with ADHD,” rather than “s/he has ADHD” or “s/he’s hyperactive.” The reason for this is to emphasize that an individual is a whole person with a complete identity, and the difference being discussed is only one component of that. Person-first language is an effort not to ignore difference, but rather asks us to view individuals as full, dignified humans. It is an approach that recognizes that what we say affects what we think. (Plenty on this is available online; The ARC is a good place to look for more information.)
Autistic self-advocates take a different approach. They often define themselves as autistic first, in recognition that being autistic shapes all facets of their experience and perception of the world and their interactions with others. (There are lots of online discussion of this. This, from the Autistic Hoya, is a nuanced discussion, and has links to others’ works, too.) Autistic self-advocates and their allies view autism not as a condition, but as integral to their identities, and so insist on that coming first.
I’m not here to recommend one or another approach. Instead, I want to explain why I find it difficult to decide on an approach, and why I think it’s important that we think long and hard about how we talk about difference. And I’m going to do it through a set of acknowledged lenses.
First, I am not myself autistic, and so that places me outside of any number of different experiences and ways of interacting with the world that others have. But second, I’m the parent of an autistic child, and I struggle with whether we are doing the “right” or “best” things as we raise SJJ. And part of this struggle centers on how we talk about SJJ–between ourselves as parents, and with others in SJJ’s life–because he doesn’t fully express himself yet on many of his daily needs, let alone on “big issues” like the complexity of his identities. So I’m trying to work around both privilege and personal responsibility when I address these issues.
I find myself switching around on what order to put the descriptors in. What I find problematic about the self-advocates’ position on identity first is that I think it’s possible that some individuals won’t want to identify as autistic first, for any number of reasons. Some may deflect attention from autism as a response to stigma: it may be easier for some individuals to navigate their worlds as “persons with” rather than as “autistic persons.” It’s often easier when working with social service and medical providers, too, since many of these individuals are trained to use person-first language; in fact, it’s often easier to say “has autism” because many clinical workers largely view autism as diagnosis, not simply as difference.
But the core problem I have with an identity-first approach when it comes to talking about SJJ is that most children at age ten haven’t really reached a developmental stage at which they’ve individuated enough to truly develop an identity. Saying “autistic child” in that situation seems to me to foist an identity upon someone who simply has not chosen yet. I want SJJ to figure out for himself what his identity will be, and I worry that putting autism first for him–which means that I will effectively determine for him that his identity is autistic until he tells me otherwise–will make that harder. At the end of the day, it’s something I have to be able to say in front of SJJ, and using identity-first language strikes me as making the identity choice for him.
This is a difficult balance to strike, and I understand others would take a different approach. But I think if we care about individuation on a person’s own terms, it may be best to not use the identity-first language while identity is still developing. As a humanistic Jew, I think it is SJJ’s right to develop his identity, and I think it’s harmful for me to put a thumb on the scale.
So person-first language? Identity-first language? I think it’s more difficult a decision than either side of the discussion among those who really care about autistic persons might make it seem, and I worry that focusing on autism specifically might distract us from so many of the broader differences we need to address. And so, I won’t make the decision for SJJ.
My point? Whatever your role–caregiver, family member, social worker, community leader, teacher, whatever–think long and hard about the language you use, and consider that it may depend on the situation and the expressed identities of the persons you interact with. Whatever the difference, and whatever the situation, you may hold someone’s identity and dignity in your hands.