Labels, Labels, Labels
A year on from my autism diagnosis, I reflect on the possibilities and limitations of labels!
In an iconic scene from one of my favourite movies of all time, Blazing Saddles (1974), the corrupt Attorney General, Hedley Lamarr, gathers crooks from across the West, ‘rustlers, cut throats, murderers, bounty hunters, desperados, mugs, pugs, thugs (…) Mexican bandits, muggers (…) train robbers, bank robbers, ass-kickers, shit-kickers and Methodists,’ to raid the town of Rock Ridge so he can make an illegal land grab. The men he recruits assemble in the desert where he presents them all with a sheriff’s badge so the raid can be construed as a law enforcement initiative. When the aforementioned Mexican bandits reach Lamarr’s sign-up sheet one of them picks up a sheriff’s badge and shows it to his mates, who laugh hysterically. He throws it back at Lamarr and walks off saying:
Badges? We don’t need no stinking badges!
It’s a line (like many from this movie) I repeat to myself on a regular basis and out loud at any available opportunity, even if no one knows what the hell I’m talking about. And I wish it were true, that we didn’t need badges or labels of any kind to define us, but the world does not seem quite ready for that yet.
One year on…
Today marks the first anniversary of my diagnosis, quite the milestone! I’m not going to discuss a movie this week, as I couldn’t really come up with one that matched my feelings for today. I wanted instead to reflect on labels, and what they mean, a year on.
In the final months of 2021, while contemplating the assessment I hardly dared mention to anyone, I told myself I didn’t want/need another label. I wanted to understand myself but I didn’t want to become something ‘other’. I didn’t want to be one of ‘them’, this category of people who are so often viewed as inferior. I’ve felt like an outsider my whole life and I didn’t want another reason to feel excluded. I had hoped and worked for an answer, a solution to the problem of me and I knew that with a diagnosis it would mean I would have to reconcile myself to the fact that certain things would never change.
I realise now this was an inherently ableist way of thinking, especially since the label was life-changing.
I could not have imagined how much this one label, autistic, would allow me to feel like I had a place in the world. I finally had a language and framework for understanding myself and my relationship with the world around me. But most importantly, after a lifetime of feeling like an alien, and trying really hard to hide it, I found a community of people who were strikingly similar to me.
Unaffiliated and maladapted…
Perhaps because I already had plenty of negative labels ascribed to mewhile growing up, I was never really convinced by any label. All affiliations, all ‘isms’, political or otherwise, seemed to come charged with dogmas to which I could never fully subscribe. I hovered around the edges of social circles comprised of people who defined themselves as socialist, anarchist, atheist, vegan, environmentalist and feminist, yet my suspicious flared whenever I caught a whiff of their own brand of fundamentalism or saw too many internal contradictions to stomach. And for all their assumed radicality, progressiveness and my own sympathies with their causes, I never felt particularly safe or accepted in those spaces. ‘
Somos los inadaptadxs’ (we’re the maladapted') my best friend and I would often joke, as we vented our frustrations with yet another institution, or clique, or activist group. I had long since reconciled myself with joining the ranks of the chronically unaffiliated.
So naturally, it came as a shock when, a month or so after my diagnosis, my anger flared following ‘helpful’ comment from an editor that I shouldn’t be ‘declaring’ my labels when sending my writing out on submissions. I was still caught up in the excitement of my new discovery, probing what it meant to be visible and the comment stung more than it should have. But, as I’ve come to learn, neurotypicals express frequent and vocal concern about the language the neurodivergent community uses and how we refer to ourselves.
As a queer, neurodivergent writer – to use the labels I was told I shouldn’t – I’ve rarely been able, nor really wanted, to separate the personal from the political. And yet, from the time I began creating art (visual or the written word) I’ve been told it is both advised and preferable to do so. Again, maybe this makes sense if your identities are not politicised on account of their marginality, but for anyone who wants to create art from the margins, identities are more often than not imposed on your work whether you like it or not. And is writing about my queer or neurodivergent experiences work not inherently political? As far as I’m concerned, Alexander Chee, speaking at Galway’s Cúirt festival in 2021, put it best: ‘Life, literature and politics refuse to disentangle themselves.’
Give me all the labels…
The other thing I never really expected from the diagnosis was the cascade of other labels I would discover. First, there’s ADHD which, for the moment, is self-diagnosed. Then there’s sensory processing disorder, dyspraxia, dyscalculia, rejection sensitive dysphoria, echolalia, alexithymia, demand avoidance, misophonia, and many others. These are common, ‘co-morbid’ or ‘co-occurring’ conditions with autism and may all exist within me as part of the ‘spectrum’ of emotional and sensory experiences which neurodivergence can encompass. I could seek a diagnosis for at least some of them but the time, expense and logistics such an undertaking would entail, makes my head spin (that’s called executive dysfunction!).
Knowing some or all of these conditions existed much earlier might have helped me get through life a little easier. But I also feel so many of these labels reflect the western obsession for naming ALL THE THINGS, and by extension, creating categories of difference and ‘otherness’, marking lines between the ‘ordered’ and ‘disordered.’ Many of these labels seem to further pathologise what is essentially a mind-body-nervous system that has divergent emotional, sensorial and cognitive processes and needs.
My aversions to particular foods are only a problem when people force me to eat them. Now that I do my own shopping I can easily avoid disagreeable textures and cut the scratchy labels off every stich of clothing I own. I don’t have to chastise or punish myself for getting distracted in the middle of the simplest activities, mixing up dates or losing or forgetting everything but my own head. I understand, and therefore can better manage, my irrational rage at certain noises (fork scrapers, I’m watching you). I can cultivate my Tai Chi practice, which is probably the only reason I haven’t died in some Darwin-award style accident caused by extreme clumsiness, like disappearing down a manhole or tripping in the middle of traffic.
Don’t get me wrong, the labels have been useful for knowing there’s an explanation for things I used to believe were just another sign of my failure at life. It’s a relief to know that I’m not the only one experiencing these things and that I can organise my life to minimise my exposure to triggers or manage the impact they have on me.
But labels have their limits…
One diagnosis, or many, will only take you so far. The label cannot account for the emotional experience of navigating such a complex world of sensory and cognitive overload or the scars left by years of feeling rejected for who you are.
In a world where everyone’s existence was valued, where we didn’t create so many categories of difference and othering with their profound social, economic and political consequences, we wouldn’t need any labels. But until we create such a world some labels can help build community and find our place in the world.
Postscript: Blazing Saddles came under scrutiny last week as critics debated racism in comedy and whether the 1974 Mel Brooks’ classic would have been made today. Certainly it is riddled with racial stereotypes, moments of brown face, ableism and the profuse use of racial slurs but, it is the white characters who are the butt of every joke. Some say it’s outright racism, others a stinging satire. Personally, I lean towards the latter, not least because Richard Pryor was one of the writers and Whoopi Goldberg still loves it. I doubt Brooks would get away with this kind of humour in 2022, but these days we have Jordan Peale and Wakanda Forever, so maybe we we’ve moved beyond the need for the laugh or you’ll cry social critique of Blazing Saddles?
I once had a fork scraper for a roommate. I had to move. Most people think I am kidding when I tell them this.
made me remember how hard it was to find them, the labels, that finally just gave up. Thanks por todo ese voodoo that you do