David Davis XVI, Part 3

On burdens and heroes

I’ve already written about how I’ve spent a big chunk of 2020 back in California, but to recap: Along with my mom and younger sister, I’ve been in Gold Country caring for my older sister, whose 24/7 in-home support was interrupted by the novel coronavirus.

“What a sacrifice!” People offer me this when I explain why I’ve been traveling to my backwater little hometown during a pandemic. It’s very kind, but I can’t help but prickle. As a lifelong caretaker for my sister, I’ve heard countless casual affirmations like these, and they add up. On their own, they’re water droplets; together, they’re erosion, slowly carving shapes in stone. Over time, the ableist narratives in which we’re all immersed—and which are quite subtle if you’re not disabled—take form. Seen through them, my sister is a burden and I am a hero. This is a problem for both of us: Burdens are not people and heroes don’t need help.

(My sister is a person. I need so much help and I’m not getting it.)

I started this DAVID series on allistic feeling because I recently had yet another shower thought that I couldn’t keep between me and the tiles.

just you and me now, sport @k8bushofficial

anyway if i had to guess about why allistic ppl interpret autistic ppl as not having feelings, i'd say that it's bc among us there's a fundamental misunderstanding about what a feeling is. this reminds me of cis people not understanding that they have pronouns too

The kindly concern of friends and acquaintances is obviously about my feelings, but it also exists, as I wrote about last week, in this framework of hero/burden, which by default prioritizes my feelings over my sister’s. More than that, it disappears or exceptionalizes her feelings, just as similar narratives disappear or exceptionalize the gender identities of trans people. (The old “not real/freak show” binary is astoundingly versatile!)

The connections between ableism and transphobia and gender and race and class have been explored in depth by smarter people than I (Read Jasbir Puar! Read Leah Lakshmi Piepzna-Samarasinha! Read Patrick Califia!), so I won’t spend too much time retreading that ground here and now, but I have written anecdotally about the parallels between the transphobia I experience and the ableism my sister experiences—both examples of structural forces that enable others’ refusal to see us as (entirely) human. Put simply, she and I are dehumanized because what commonly and structurally constitutes a good body/mind excludes my gender, and what commonly and structurally constitutes a good body/mind excludes my sister’s brain.

We—you, my smart readers, and I—know that individual perceptions of my sister as a burden are produced and reinforced by things like the government-mandated poverty of disabled people; by dwindling social services that force more of the “burden of care” on families like mine; by the normalization of “just asking questions!”-ass type bullshit around whether people like my sister deserve to be alive, from discourses around prenatal testing to the hoarding of treatment for COVID-19. Indeed, the question of whether autistic people deserve was born with the creation of the diagnosis. Leo Kanner, one of the psychiatrists who identified autism, participated in the infamous “euthanasia debate” of a 1942 issue of The American Journal of Psychiatry. (To suggest that disabled people ought not be alive is to suggest genocide, which is itself a concept problematized by white supremacy [h/t Zoé Samudzi].)

We also know that this false conception of disabled people as needing care and support that abled people don’t need is a feature of American late capitalism. As Joseph N. Straus writes in “Autism As Culture,” autism might be understood to represent a pathological excess of qualities, like individuality, autonomy, and self-reliance, that are otherwise understood to be highly desirable traits in our bootstrappy context.

But it is a fantasy to think that the things my sister needs are not things that I formerly needed (as a child and infant), have since needed (as a sick or temporarily disabled person), or will eventually need (as a human with a body that changes and ages). We are social creatures in need of physical and emotional mutual care, aid, support, and love. Anyone in this wretched country who uses one of the dwindling public or common utilities—calls the fire truck, uses a highway, drinks from a fountain, checks out a library book, signs up for food stamps—is not an independent person. News flash: Nobody is. Even Ted Kaczynski had to come off his mountain for batteries every once in a while.

Now, I’m curious about the role that individual ignorance plays in this dehumanization of which I speak. Not ignorance, exactly, but the lack of a framework to understand an experience. Like when I was 19, I learned about colorism in a lit class at Sacramento City College. 19! I was the only white person in the class. Everyone was nodding their heads while the instructor walked us through some motif of Huckleberry Finn and I was sitting there like 🤯. He put a name and a framework to something of which I was only vaguely, inarticulately aware. It changed the way I saw the world. For everyone else in the room, it was Tuesday.

This is not to say that the cruelty of dehumanization is reducible to ignorance, or that said ignorance can be fixed with a little education (usually on the part of the oppressed class). I guess ignorance is inadequate for the phenomenon I’m trying to describe: I am talking about the choice to remain uninformed in order to refuse acknowledgement of another’s humanity. This ignorance is willed, and is a crucial tool in maintaining the cognitive dissonance required (by some of us) to treat other humans as subhuman.

As I tweeted, I noticed a similarity between the denial of my sister’s humanity based on the way she processes and understands and expresses her feelings, and the denial of my humanity from cis people who do not understand the grammatical function of the pronoun. And I think these denials stem from ignorance about what autism actually is and what a pronoun actually is, but I also think they stem from an ignorance of the self as fostered by various -normativities—otherwise, a quick stroll through the autism DX or an English lesson would eliminate the ableists and J.K. Rowlings of the world. As a white person, I do not need to have a conscious understanding of how colorism functions because white supremacy is designed so that I have no need to acknowledge its if I don’t want to (and if it would not benefit me, personally, to “know,” then I can simply choose not to know). Neurotypical and allistic people don’t need to think about how they process and understand and express their/our own feelings. Cis people don’t need to understand their own genders. To do so would be to call into question these categories in the first place.

Interestingly, the claim that my autistic family and friends are unfeeling is not only an insult to their humanity, but to mine as well. It rests on me not being capable of discerning when I’m interacting with other humans. Yet if I imagine myself playing UNO with my sister and then imagine myself playing with a Furby (those winking they-devils!), I am easily able to pinpoint the affective differences between these experiences. Because one is with a person and the other is what passes for a toy.

If autistic people were not already forced to speak for themselves on the matter, the question of whether they can feel could be easily dispensed with by the evidence that someone like me could provide. To deny autistic feeling is to—on a much less damaging level, to be clear—deny allistic feeling, and if ableists were consistent, this would be good enough to make them reconsider their beliefs.

I hope all of this helps to explain why well-meant and, taken on their own, harmless comments from friends acknowledging the hard work of caretaking don’t tend to stick the landing. If it would shock you to know that allistic people claim that autistic people don’t have feelings because they process and express human emotion differently than allistic people do, well, prepare to be shocked: I hear it in reference to my sister ALL the time, from my family, from care providers, from social workers, from medical experts. My sister hears it, too, and has heard it her whole life. And most of the time, my correction doesn’t change anything. Because this is not about knowledge. It’s about power. We consolidate power more effectively by willed ignorance, by selective knowing. And a lot of people would rather not know.