16 September 2020

Reconnecting Disability and Asexuality (repost)

This article originally appeared in Disability Intersections on 29 January 2014. Here is the Internet Archive version of the original page. 

Reconnecting Disability and Asexuality

Lydia X. Z. Brown

Note: This post contains a brief mention of rape.

Photo of people marching with mylar balloons that spell out "ASEXY"; photo by Marilyn Roxie on Flickr (used under a Creative Commons license).]

On many standard demographic questions, you may be asked to select your sexual orientation from a drop-down menu or a checklist. Most questions allow you to choose among heterosexual/straight, homosexual/gay/lesbian, and bisexual. (Many mistakenly list “transgender” as a sexual orientation.) More inclusive options may also allow you to choose among pansexual, polysexual, androsexual, gynosexual, or skollosexual. 

But for many of us, none of these terms seem to fit.

Asexuality, which can be broadly defined as a lack of sexual attraction or desire toward other people regardless of gender, remains little discussed both in theoretical literature and in mainstream activist circles, perhaps largely due to its defining rejection of sexual contact or desire as a necessary, fundamental, or innate component of romance or human experience.

Foucault’s claims in “Friendship as a Way of Life” trouble conventional notions of sexual intimacy as predicative of “homosexuality” or even, perhaps, of “heterosexuality.” In questioning the conflation of homosexuality with conventionally explicit sexual acts, Foucault asserts that intimacy might occupy a multiplicity of experiences, interactions, exchanges, and gestures, perhaps opening the door for a more nuanced understanding of asexuality as queer embodiment. Asexuality itself as an orientation—or lack of oriented sexual desire, as the asexual does not desire any subject—troubles notions of sexuality that predicate the sexual with the romantic, yet simultaneously offers avenues for challenging a dichotomy of sexuality and romance.

In challenging recent trends and models of sexuality in the mainstream LGBT movement, Michael Warner’s caution against normativity simultaneously concerns both the insistence of many conventional LGBT activists that to be gay does not mean to be hypersexual and unabashedly promiscuous, and the “acceptability” of the non-sexually active gay as non-threatening (“a gay movement they can take home to Mom”). This including the homophobic anxiety of homosexual practice that seeks to normalize and civilize the homosexual through celibacy, an anxiety articulated by the revolutionary Gay Liberation Front as attempts to psychiatrize the homosexual into “an asexual vegetable.” Yet in so doing, Warner’s critique also presumes sexuality as normative for gays. While he positions his theoretical work in opposition to respectability politics and heteronormativity, he still operates from within a framework that requires and presumes sexuality as a necessary component for what he terms “the gay and lesbian movement.” Is this in itself limiting?

Certainly there are many ways to experience sexual desire and orientation beyond heterosexuality, gayness or lesbianness. Yet further complication of friendship and love suggests transcending the boundaries imposed by a framework of sexuality as normative embodiment for bodies and desires. Asexuality transgresses the conventions of sexuality as a necessary precondition for full human agency.  Asexuality demands a reconceptualization of the boundaries of queer—does conventional queer theory predicate itself on the presumption that all humans experience sexual desire or themselves as sexual beings, thus creating its own normative sexual existence? Given such contentions, laying claim to asexuality complicates the boundaries of queerness by suggesting new ways for bodies and desires to orient themselves through destabilizing sexual normativity. Asexuality creates more space for new modes of conceptualizing desire and love, by interrogating sexuality as a necessary condition for romance and complicating the boundaries of friendship. As both Western and non-Western LGBT activists resist the urge to pathologize queer sexuality, so asexual activists struggle against the normativity of sexuality, whether homonormative or heteronormative embodiment. Can asexuality, then, be construed as queerness?

Few mainstream LGBT organizations recognize or acknowledge the existence of asexuality. (Some homonormative activists even insist that asexuals are actually repressed gays using asexuality as a more socially acceptable closet for homosexuality.) Elsewhere, asexuality is largely reduced to a pathological inhibition of normal human sexuality—and this even and only when asexuality is recognized as a separate experience from the (in)voluntary celibacy of an ordinarily sexual person. But if gay or lesbian can exist as identities or names for experiences in sexual embodiment, then it must also be possible to position asexuality as a locus of intimate experience and way of doing relationships.

The call for inclusion and affirmation of asexuality and all its varied lived experiences and practices has given rise both to communities like AVEN (The Asexuality Visibility and Education Network) and smaller, local collectives of asexual-identified activists. Yet so prominent within asexual communities is the process of disability disavowal—a practice so familiar to those of us who identify as disabled, neuroatypical, or chronically ill, but never any less painful or exclusionary, never any less removed from the hegemonic ableism that pervades mainstream society and supposedly radical, transformative spaces alike.

Sexual normativity is intricately intertwined with the hegemony of disability, as well as the mainstream LGBTQ movement, which tends to privilege white, upper-class, cisgender, abled perspectives without acknowledging an intersectional queer politic. The typical body is presumed to be sexual, and sexuality conflated with health and wellbeing. While heteronormative standards uphold heterosexual encounters and experiences as ideal, noble, natural, and basic while exiling non-heteronormative experiences and encounters to the margins, sexual normativity upholds sexual experience itself as normative and fundamental to the human experience. (Simply consider how deeply embedded celebrations of sexuality as a core, innate component of womanhood and queerness have become to feminist and queer theory and culture.)

Asexuality has long been pathologized as evidence of disease or defect, or else reduced to psychiatric difficulties, much in the same vein as non-normative sexualities and gender expressions have also been de-legitimized and dismissed as mental health problems or other medical issues. Is it surprising at all, then, that much of the asexual community is riddled with disavowal of disability? For many asexuals, staking a claim in asexuality as a legitimate and valid identity and way of life requires the rejection of the idea that asexuality is evidence of weakness, debility, disease, deficit, or defect. The idea that there is nothing wrong with me so easily translates to there is nothing wrong with my body; there is nothing wrong with my brain, and these are profoundly ableist proclamations.

The equation of sexuality with wellbeing and the ideal body, combined with the rampant desexualization of disabled people, perpetuates a particularly vicious oppressive system that privileges those whose are abled in part by virtue of their presumed sexual competence and experience while contributing to the disablement of those whose selves diverge from ablenormativity, neuronormativity, or sexual normativity.

Where sexuality is upheld as an innate fact of human existence or a necessary precursor for complete wellbeing, people on the asexual spectrum are necessarily relegated to marginalized status by virtue of the assumption that a healthy, well person must be sexual. How does this apply to disability? When those whose bodies/minds are disabled are then presumed incompetent and nonsexual, this assumption serves both to disenfranchise the disabled by denying us agency and to further the oppression of sexual normativity against asexuals, both those otherwise considered non-disabled and in particular, those already considered disabled.

In the course of disabled oppression, disabled people have long been presumed incompetent and asexual as a product of prevailing notions of sexuality as the norm and as a requisite factor of humanity. Even in recent history, there have been many legally enforced and socially condoned practices for the purpose of controlling, surveilling, or eliminating disabled sexuality, from forced sterilizations to disability-selective abortions, from laws and policies prohibiting the marriage—and therefore, presumably, the sexual union—of the disabled to broad denials of sex education, particularly for the intellectually and developmentally disabled. Why? Service providers, caretakers, and other agents of the social structures that perpetuate ableism have long held that disabled people are either incapable of existing as sexual beings or do not possess the competence or agency required to make decisions about sexual experiences and encounters. Michel DesJardins, in an essay for Sex and Disability, notes that there are two prevailing trends in how disabled sexuality is conceptualized—we are presumed to be either entirely nonsexual, lacking desire toward others as well as desirability as sexual beings, or else, wildly, uncontrollably hypersexual, impulsive, reckless, and dangerous.

In attempting to assert ownership and agency over disabled sexuality, many disabled activists and scholars have likewise come to the realization that the push against ableism must rely upon the disavowal of asexuality. If disabled people are fully sexual, autonomous human beings, as human as abled (sexual) people, then the notion that disabled people are asexual is ridiculous and wrong. The move from disabled people can exist as sexual beings, desiring others and being desired to disabled people are not asexual; we are sexual just like everyone else is also subtle, but incredibly different, and, in its final form, rather oppressive toward asexuals. In centering disabled sexuality as normative, asexuality receives the short end of the stick.

For those who are both disabled and asexual, the dual, parallel mechanisms of disavowal are particularly powerful and particularly painful. Of course it’s wrong to assume that all disabled people are somehow innately incapable of existing as sexual beings. Of course it’s wrong to assume that asexuality is a pathological condition that can be fixed with the right therapy—or, in the most egregious (yet not uncommon) cases, corrective rape. But it is perhaps just as damaging (both on individual terms and in how our communities function) to continue the disavowal of disability as necessarily bad, negative, or undesirable, or the disavowal of asexuality as necessarily inhuman. The oppression of asexuals has often used the constructs of disability and madness as the vehicles for maintaining sexual normativity. And disability oppression has often used the idea of asexuality and the presumption of sexual normativity as vehicles for maintaining ablenormativity and the pathology paradigm of disabled existence.

But if asexuality can lay claim to queerness, then we need to reimagine how disability and asexuality can constitute each other and question how ablenormativity and sexual normativity have been used to pit our communities against each other. We have such long histories of throwing each other under the bus in the rush to claim our stake in humanity. Intersectional social justice doesn’t work with single-identity politics. My humanity as a disabled person should not come at the expense of my humanity as an asexual.

16 May 2020

Gendervague: At the Intersection of Autistic and Trans Experiences (repost)

I originally wrote this post for the National LGBTQ Task Force Blog, and it was published there on 22 June 2016. Here is a link to the last Wayback Machine capture of it, taken on 11 April 2019.

Below is the original post in its entirety - please note that I am not the person who came up with the word "gendervague." I don't know who did, but I've seen sources around the internet attributing it to me, which is incorrect. The word was in wide use among other autistic people before I found out about it.

Also, since I wrote the post four years ago, it probably doesn't use all of the same language or way of thinking about this as I might use today. It reflects what I was thinking at the time.


Gendervague: At the Intersection of Autistic and Trans Experiences

JUNE 22, 2016

I’m an autistic activist deeply invested in queer politics, and I’ve managed to fumble my way around without ever developing a conventional understanding of gender. Growing up, everyone around me assumed I was a girl based on the genitals I was born with, but I always felt deeply uncomfortable with being labeled a “girl” or “woman.” I don’t feel like a woman, but I know I’m not a man either. I now identify as genderqueer or non-binary. It wasn’t until partway through college, though, before I began to question what gender might mean to me, my explorations largely kindled by developing important relationships with many openly trans autistic people through my activism.
Lydia picture for blog post Feb 2015
Lydia X. Z. Brown delivering keynote speech at the PEAK Parent Center’s Conference on Inclusive Education about “Achieving Disability Justice: Beyond Ableism and the Imagined Normal”  in Denver, CO, in February 2015. 
In fact, such a huge proportion of the autistic community identifies as trans, genderqueer, non-binary, or genderless that we’ve developed numerous in-jokes and in-group terminology to describe our particular intersection. More recently, I’ve started referring to myself as gendervague, a term coined within the autistic community to refer to a specifically neurodivergent experience of trans/gender identity. For many of us, gender mostly impacts our lives when projected onto us through other people’s assumptions, but holds little intrinsic meaning.

Click to learn more in the National LGBTQ Task Force’s joint statement on the rights of autistic transgender and gender non-conforming people!

Someone who is gendervague cannot separate their gender identity from their neurodivergence – being autistic doesn’t cause my gender identity, but it is inextricably related to how I understand and experience gender. Autistic people’s brains are fundamentally different from those of anyone who is assumed to be “normal” or “healthy.” For many (but certainly not all) autistic people, we can’t make heads or tails of either the widespread assumption that everyone fits neatly into categories of men and women or the nonsensical characteristics expected or assumed of womanhood and manhood. Recent research has shown that autistic people are more likely to identify as transgender or genderqueer than non-autistic people. That’s not surprising to me, because I’ve met far more trans or genderqueer people in autistic spaces than I have anywhere else.

Many of us are used to being outcasts for our atypical communication, sensory experiences, emotional expressions, and behavior. For some of us autistic people, that constant outsider status makes it easier to figure out that we fall somewhere along the transgender or genderqueer spectrum since we’re already used to not fitting in, or at least, it’s harder for us to hide outward gender non-conformity. The advent of social media has also been a welcome boon for those of us uncomfortable with or incapable of consistent face-to-face interaction, allowing us to safely explore new concepts and meet people with similar experiences.

Similar to how mainstream society often pathologizes transgender identity, the dominant narrative around autism and other mental disabilities is also that we are broken and there is something wrong with us that requires psychiatric intervention. Despite the common intersection of autistic and trans identity, however, much of the trans movement rejects neurodiversity and by extension, many disabled trans people. In the rush to affirm the validity of trans identities and experiences, trans movements frequently practice disavowal of neurodivergent and other disabled people. The common refrain, “Being transgender isn’t a mental illness, so there’s nothing wrong with us!” results in real harm to all people with mental disabilities, but especially those of us at this intersection. While being transgender is of course distinct from having a psych disability, the implicit assumption is that those who are really mentally ill should be subject to coercive treatment, paternalistic care models, and social stigma as broken or unstable.

That pattern of disavowal directly contributes to erasure of autistic and other neurodivergent trans people. In classrooms, group homes, and our parents’ houses, we are told that our gender identities are fake because we’re autistic. If placed under guardianship – common for many adults with intellectual and developmental disabilities – we can be legally prevented from even going to LGBTQ meet-ups by an anti-trans caregiver. Autistic trans people of color face high risk of criminalization, police violence, and incarceration. Trans autistic children are especially vulnerable to behavior plans that include cisgender normalization alongside forced suppression of autistic traits, while gender-affirming expressions or explorations risk harsh compliance-based punishment in schools.

With a trans movement that often rejects neurodivergent people in its fight for acceptance and validation, autistic trans people are left in the lurch. In the fight to legitimize our existence as worthy and valuable, we need to reject the refrain that there’s nothing wrong with us while there is something wrong with them. We deserve movements that recognize and affirm experiences that cannot be easily separated into trans or autistic issues only, especially given the commonalities of the oppression we face. It’s okay to be autistic and trans, and it’s okay for those things to be related and overlap. I’m excited to be working for the National LGBTQ Task Force this summer, where I have been encouraged and supported in working on all issues from an intersectional framework, without having to silo aspects of my identities. Effective activism for trans rights, let alone trans liberation, requires not only a recognition of the parallels and connections in our issues and experiences, but active commitment to intersectionality with neurodiverse communities.

Click to learn more in the Task Force’s joint statement on the rights of transgender and gender non-conforming autistic people!

by National LGBTQ Task Force Holley Law Fellow Lydia XZ Brown

26 March 2020

What I do know about COVID-19

I don't know much about virology, epidemiology, or pharmacology. But I do know that the vast majority of my friends, colleagues, and community members, are scared for their lives. Because just like always, government and corporations are showing how little they value disabled people. 

I know that at the end of this there's a very big possibility that literally half the people I know or more might be dead. This year.

I'm 27.

And I've already lived through deaths of dozens of my peers, due to institutional abuse, medical ableism, filicide, or police violence.

It's not even just that huge numbers of us are at significantly higher risk for severe infections and death. It's that literally right now states and hospitals are writing and updating "medical rationing" plans that would will deny care to many of us. Or forcibly take disabled people's existing ventilators.

We already know how deeply ableist the medical profession is. How disabled people are routinely denied eligibility for organ transplants, have newborn infants removed solely based on parents' disabilities, face forced sterilization, and are denied other lifesaving care. Disabled kids paraded naked in front of medical students as examples. Dental students practicing extractions by removing developmentally disabled people's healthy teeth. The fact that it took until THIS MONTH for the FDA to ban electric shock punishment on disabled people. The "bioethicist" who had a 13 year old disabled kid moved to his hospital so he could deny the kid necessary antibiotics for pneumonia, remove him from intravenous nutrition and hydration, then give him some morphine and watch him die instead. (The doctor is Norman Fost, by the way.)

All that before you even factor that for disabled people of color, disabled queer and trans people, disabled rural people, disabled workers, disabled people in jails and prisons... 
It's a million times worse than for moneyed degreed cishet white disabled citizens. Who are also terrified.

I know that so many people I know are scared shitless. Because they know we'll be left on the chopping block. 
And I know that too many people I know are also ambivalent about it all. Because they know we never had much of a chance in this violent, fucked up world anyway.

For instance, did you know that before including other factors like race and gender, autistic people die on average 30 years before non-autistic people
I am almost certain that a major causal factor in that statistic is denial of adequate health care plus medical ableism.

About the enormous numbers of disabled people in prisons? Helping Educate to Advance the Rights of Deaf Communities (HEARD) estimates that probably over 80% of people in jails and prisons are disabled in one or more ways - in large part because disability is both a cause and consequence of incarceration, as Talila Lewis repeatedly points out. The fact that prisons largely cage Black, Native, and Brown disabled people is no accident, but by design and deliberate intent. And the fact that COVID-19 is spreading and will continue to spread rapidly and uncontrolled throughout jails and prisons is also no accident. 

Prisons are ripe grounds for genocide. Prisons are a product of eugenics. Prisons are rooted in ableism, white supremacy, and capitalism, at a minimum. Prisons are violence.

Ableism is both necessary for and dependent on white supremacy, imperialism and colonialism, capitalism, queermisia and transmisia, and misogyny. Disabled people at the margins of the margins will absolutely be treated as expendable and disposable. We already always have been.

10 October 2019

Bad types of sex ed and sexual violence prevention about developmentally disabled people

CW: If it's not obvious from the title, this (short) post talks about some very violently ableist ideas about sex and sexuality, including sexual violence.

Bad types of sex ed and sexual violence prevention about developmentally disabled people

Lydia X. Z. Brown

[Photo: Graphic showing photo of a dusty chalkboard on cinderblock walls. The text says "Bad types of sex ed and sexual violence prevention about developmentally disabled people - lydia x.z. brown."]

A friend recently posted a question asking what red flags to look for in training materials about sexual violence prevention for autistic and other neurodivergent communities.

Many activists, self-advocates, scholars, and other community members have written about different kinds of ableist ideas about sex, sexuality, and sexual violence that hurt autistic and other neurodivergent people. I will not attempt to describe every possible form of ableism in this category.

Nonetheless, as I provided my friend, I'm publishing this short list of some of the most common bad types of sex ed and sexual violence training about developmentally disabled people.

The curriculum, training, materials, or lesson plans are bad if they make any of these assumptions, or if these beliefs are foundational in them:

Autistic and other neurodivergent people only experience sexual contact in the context of sexual violence targeting us ― e.g. we are incapable of having or acting on our own sexual desires and are always and only victimized, so the goal of sex ed for us is only to protect and keep us safe in a very paternalistic and agency-denying way.

This is bad especially because the rates of sexual violence targeting us are already astronomical, and that reality is both horrifying and completely unsurprising to anyone neurodivergent or developmentally disabled in any way. Why that fact makes it worse to assume our only sexual experiences are violent ones is because it still denies our agency ― our ability to make choices for ourselves, and our capacity to maybe want to experience sexuality in ways that we not only consent to, but that give us joy or pleasure. Consensual, pleasurable sexual experiences are something that some survivors of sexual violence actively seek (in different ways and on different timelines, of course) as one path toward healing.

Autistic and other neurodivergent people can't understand consent, sex, sexuality, or sexual urges or desires, and so the possibility of our sexuality means that we are a risk, threat, or danger to other people (and especially and specifically nondisabled people of any gender or age), so sex ed is about controlling us as preemptive predators waiting to happen, and again, denies our competence or capacity by presuming us as always incompetent and incapable of understanding (and so also incapable of choosing to change our own behavior).

This is also bad especially because there are many predatory people in autistic and other disabled communities, especially certain types of predatory disabled men who prey especially on people of marginalized genders (women ― cis or trans, and nonbinary people). Just as in any group of people, no matter how that group is defined by itself or by people outside the group, there are always predators.

When the predators are disabled, they sometimes use their disability as an excuse for their violence or harassment, which is not only inaccurate, but hurts every other disabled person who is not a predator or worse, who has been victimized by disabled predators. Sex ed/sexual violence prevention training that uses this harmful idea actually enables these kinds of predators by letting them off the hook and excusing them from ever having to take accountability. That is bad and wrong.

Any relationships we have must only be with nondisabled or neurotypical people who are there to help, save, rescue, or therapize us, or with whom having a relationship proves we have "overcome" neurodivergence or disability. The nondisabled partner also primarily exists as a caregiver.

This is bad because of course partners in any relationship configuration can help each other, or provide care or support to each other, and that is not automatically wrong, abusive, or exploitative. But it also can be wrong, abusive, or exploitative, for a lot of different possible reasons, and given any number of different types of power dynamics.

More importantly, this idea is bad because it reinforces the idea that being a disabled person, and a neurodivergent or developmentally disabled person in particular, means that we can only prove our worth or value by dissociating ourselves from other developmentally disabled people.

Any relationships we have must only be with people who are similarly disabled or neurodivergent, because we are considered lesser people by virtue of our neurodivergence or disability, and therefore we "only" "deserve" each other. This also means our relationships are automatically treated as not as good or meaningful as relationships between nondisabled and neurotypical people.

You can find examples of this in news coverage of (a) a wedding between a couple where both partners are little people, and (b) a wedding between a couple where both partners have Down syndrome. In news coverage of both of these weddings, the reporters talked about the couples as being super cute and adorable in a way that sounded like they were talking about two little kids in kindergarten who say they "like" each other and give each other flowers they've picked from the recess playground. It's infantilizing and also patronizing. It treats the relationships as not really real, and also reinforces the idea that disability is bad and being disabled is bad, and so that is why disabled people should only be with disabled people.

In reality, disabled people can choose each other as partners in all kinds of relationship configurations for a million different reasons. We also can choose partners who either aren't disabled at all, or who have different disabilities than ours, for a million different reasons.

Please do not use or reinforce these ideas if you are helping create or edit any training about sex ed or about sexual violence prevention. There are far, far better resources out there.

11 October 2018

The neurodiversity movements needs its shoes off, and fists up.

The neurodiversity movements needs its shoes off, and fists up.

CW: Mention of sexual violence.

Thanks to Tracey Hickey for intellectual support in drafting this essay.

[Photo: Graphic in deep red and black, with dark/dramatic aesthetic, showing many fists raised in the air. White large text says Neurodiversity Movement: Fists Up. Small white text says Autistic Hoya.]

There is a book set to be published in the next few weeks that features a set of short essays on the future of disability studies (Manifestos for the Future of Critical Disability Studies, Vol 1.). I’m sad and concerned about one of the of the essays in the collection, titled “Dear neurodiversity movement: Put your shoes on” by Dr. Sonya Freeman Loftis (also an autistic advocate), which, among other faulty arguments, cites a 2011 blog post of mine to support a point I strongly reject and oppose.

Dr. Loftis’s argument in that section of her chapter decontextualizes my post by attributing a meaning and intent to it that I did not have and do not support. The citation follows the statement, “It is disturbing to me how incredibly angry people in the autism community have become over terminology,” and seems to be referencing a particular paragraph in that post which references civility, immaturity, and sensitivity in arguments about language preferences. My intent with that segment of the post, which I overall still support although my exact thoughts have naturally changed in the last seven years, was primarily to address autistic people disagreeing with one another, and to urge us to use basic respect and decency — not to suppress all anger and other harsh sentiments. The footnote accompanying the citation says, incorrectly on my reading of it, “Autistic activist and influential blogger Lydia X. Z. Brown has also called for an end to this anger.”

And while I appreciate what it seems Dr. Loftis has attempted to do, in qualifying many of her statements in-text and in footnotes, I also profoundly disagree with the vast majority of the author’s arguments and intentionalities, and would like to set the record straight while offering a countering perspective and call to action.

(Dr. Loftis, to be clear, this is not a call-out, but rather, I hope, an invitation for further discussion and dialogue with you as a fellow member of the autistic community.)

I need my shoes off.

I’m currently sitting in an office behind a desk with my shoes on. I would strongly prefer that they be off. In fact, I usually sit at desks with my shoes off, because it’s infinitely more comfortable and freeing for my sensory and proprioceptive needs to take my shoes off. (I have a specific posture with my feet and my legs that is most comfortable for me, which results in leveraging my feet against part of my shoes to create a sensation of pressure, while one or both of my knees or ankles is also pressed against the leg of a table or desk for more pressure.) The only reason my shoes are still on right now is because it would take too much coordination of effort and steps involved to take them off, and eventually I will need to walk outside (a task that for me, always needs shoes).

Several years ago, when I was working in an office environment for the first time, one of my supervisors noticed that I was sitting at my desk with my shoes off, and she pulled me aside to tell me that that was generally unacceptable and unprofessional to do in the office. She mentioned that it would probably be okay to take my shoes off if no one was walking by and I was just at my desk, but that if I needed to go anywhere, like walk to the copier or heat up my food in the microwave, I needed to put my shoes back on.

Since then, I’ve found myself in vastly different spaces and places, everywhere from radically defiant queer and trans people of color gatherings in apartments shared by several roommates to the glistening downtown high-rise office suites of white shoe law firms; from the grimy visiting rooms in jails and prisons that sometimes have cockroaches crawling across the floors and always have prison guards watching for the slightest reason to enact more violence against you and the person you are visiting today, to the esteemed halls and elegant receiving rooms of the White House and Capitol Hill. (I usually keep my shoes on in all of them.)

But to the larger metaphorical argument made in “Dear neurodiversity movement: Put your shoes on,” I have to respond with a resounding and vehement NO. I do not believe in even attempting to appease the impossible, asymptoptic standards of respectability politics and (white, abled, cis, masculine-centric) professionalism simply because such attempts will always and inevitably be doomed to fail.

Respectability politics is a failed project.

I wrote “The Significance of Semantics” more than seven years ago, when I was emerging into and exploring the autistic activist community beyond the folks leading the work in Massachusetts where I grew up. Since then, I’ve taught an undergraduate seminar, served as chair of an independent state government agency, and begun work in the legal profession after earning my law degree (by the skin of my teeth, I might add). I’ve also lost out — I’ve gained perhaps nearly as many enemies as friends and cordial colleagues, if not more, in both activist and professional spaces; I’ve lost out on amazing professional and academic opportunities, many almost certainly because I refuse to be silent about violences such as white supremacy, ongoing settler-colonialism, and racism-ableism; I’ve received enough rejections to make a single-spaced bullet-pointed list of them nearly ten pages long.

Whether I wore a suit and kept my shoes on, or not, did not change this. Whether I decided to publicly or demonstratively stim or not, did not change this. Whether I decided to disclose and declare proudly that I am autistic and proud, or neglect to mention it, did not change this. I know who and what I am, what I am capable of achieving, and what and how I am worth(y). Sometimes I don’t, won’t, or can’t measure up. My ability to mask or pass has minimal effect.

I’m constantly caught between demands that I perform an impossible level of respectability, professionalism, or whatever you want to call it, or else be completely discarded and invalidated, and the reality that no matter how well I can operate in stealth or mask or pass as having any manner of privileges I currently lack, I will still be ignored and dismissed and accused of being too radical, too militant, too intense, too crazy, too immature, too unpressional, too passionate, too scary, too angry, too bitter, too resentful.

In a recent workplace, a supervisor (who was a nondisabled white man) attempted to pit me and one of my friends (who is a nondisabled Black woman) against each other in a classic game of divide and conquer. All of our other colleagues were white, so of course, we were the only two targeted for constant micromanaging and condescension. He insinuated repeatedly that I was incompetent and incapable of performing my responsibilities, and eventually began to exclude me from work-related emails while only emailing my friend — enacting misogynoir (racist misogyny targeting Black women) against her by demanding she perform extra labor (i.e. all of my work), to pick up for me, and enacting intense ableism against me by presuming my incompetence and assuming I needed to be taken care of, handled, or managed. At one point, my friend had several absences because of a personal emergency, which he excused in writing. Later, he blamed me for all of the absences — stating in writing that I was absent each of those times — and penalized me for them. The facts that I did my damndest to fulfill my duties (and go above and beyond), knew how to dress court-appropriately, and wrote excellent professional and legal work did not matter.

Respectability politics didn’t save me then, and they won’t save our community or movement now or in the future either.

Believe me, I understand the need for day to day survival. If wearing a suit versus a t-shirt and jeans will make a difference in whether my advocacy for/with a friend or client works, of course I’ll wear the suit. If using certain academic/professional field-specific terminology will help an audience understand an argument I’m making, of course I’ll use that terminology (so long as it’s not something I find inherently dehumanizing). If I need to be careful about not dropping the word “fuck” during a job interview (which we all should strive to not do), of course I’ll be mindful of it.

Many of us also understand both how fucking privileged it is to be able to enter the world of higher education, let alone exit with the degree in hand, and how much more respect (and therefore credibility, legitimacy, and potential influence/ability to intervene in terrible situations/systems of power) we will gain if we do so, respect that can help us and those we care about survive. I know this intimately, because I’ve already experienced how much easier it is to move through certain specific spaces now that I can put letters after my name. But no amount of degrees or professional credentials will ever unmake me as a neurodivergent, disabled, queer, nonbinary trans, East Asian weirdo. I still have people ask me where my parents are.

I will never blame, shame, or guilt any other marginalized person (let alone those of us at the margins of the margins) for using respectability politics as a(n imperfect, and not guaranteed) survival or coping mechanism, and I firmly believe it is harmful and dangerous whenever other community members do so. We should instead always strive to support one another in using whatever tactics we need to survive. At the same time, I believe that any argument in favor of a community-wide adoption of/adherence to respectability politics (even with the caveat that not all people have the privilege to be able to pass or mask, either at all, or consistently), is also deeply harmful and dangerous.

Individual people (to the extent they are capable of doing so) may need to reply on respectability politics simply to survive — to survive school, to survive the terrifying experience of involuntary commitment, to survive a potentially deadly police encounter, to survive in the capitalist society we live in that assigns value and worth based on productivity and labor. I respect and affirm that.

Our movement, however, needs nothing of respectability politics. Accepting — conceding, surrendering, submitting to — that will only erode our movement until it crumbles entirely. Respectability politics is what’s gotten us into reliance on foundations and nonprofits, and elected officials and bureaucrats, and policies and programs that only benefit the most privileged and resourced members of our communities at the direct expense of the most marginalized. Radical, militant anger — and radical, militant hope, and radical, wild dreams, and radical, active love — that’s what’ll get us past the death machines of ableism and capitalism and white supremacy and laws and institutions working overtime to kill us.

Anger is a necessary rhetorical and strategic tool.

stop telling people not to be angry.

anger can absolutely be transformative. none of our movements would happen without it. anger can help reveal what is most important to us and give us a kind of clarity that few other emotions can.

anger is fire and fire is powerful. we can channel anger in useful & accountable ways.”

The idea that anger necessarily, innately, and inevitably harms a movement and drives allies away is a red herring intended to distract movements and communities away from legitimate (and completely rational/logical) anger instead of focusing our attention, and labors, on serious matters of societal, intra-community, and interpersonal violence.

Yes, of course, the most effective tactic to use when a would-be ally makes a mistake, particularly one that causes serious and lasting harm, may depend very much on context, and may not always (or even often) be the tactic of yelling at that person. It is not strategic to use only one tactic (whether that is the tactic of gentle, placating correction in private, or the tactic of extremely loud and public harsh callout, or anything else for that matter) for every possible situation or encounter. Few, if any of us, would contest that.

And I’m certainly the last person to argue in favor of unnecessary (and frankly, ableist, racist, and classist) gatekeeping, litmus tests, and nitpicking of terminology or exact professed politics for people in activist or advocacy spaces (beyond what I hope would be clear boundaries and limits for those I’m willing to organize with, which might of course be somewhat different than what I’m willing to accept from people not currently invested in organizing, while still sharing a common baseline). Of course, some strong boundaries are good and healthy and necessary, and often hard to set and enforce because we have been traumatized by so many violations over many lifetimes, individually and collectively. Like not accepting any amount of sexual harassment whatsoever, let alone any other form of sexual violence, in our communities, or apologetics for white supremacy.

I recognize the tension inherent in calls to both educate and lift up all community members, as many of us who are marginalized in one way may yet actively participate in oppression and violence against people marginalized in different ways (since we all have capacity to harm, and since interlocking systems of oppression work by pitting us against each other), while also rejecting firmly the notion or expectation that the most marginalized have a lifelong obligation to perform the uncompensated and exploited labor of personally educating those who hurt us in a way that doesn’t threaten them. But we can’t expect to do the work of solidarity, of striving to practice allyship, if we aren’t willing to face the anger of those we, our ancestors, and/or our communities have harmed in the process. (That doesn’t mean that each of us must individually submit to public flagellation as a community punching bag, or that we have to be happy about someone else’s anger being directed at us. But it does mean that our discomfort with someone else’s anger, if we’re the person who caused them harm, is less of a concern than that person’s (re)traumatization. We can process it… with someone else. And if we must, perhaps because the expression of anger could also be retraumatizing to some of us, we can choose not to be around that person in the future, though that isn’t necessarily a good strategy to apply to each situation in which someone expresses anger for any reason.)

In organizing and activism, sometimes it makes sense to display calm. Other times, it makes much more sense to kick and scream.

We can be kind, compassionate, caring, and gentle (when appropriate, as it may be in many cases, though certainly is not in many others) with would-be allies and with fellow community members, without holding ourselves to the superficially saccharine or dehumanizing standards of respectability, and the farce of moral superiority that comes with condescendingly condemning use of anger in our rhetoric and strategies.

But we can’t possibly be committed to the long-haul work of liberation and justice — the freedom work, the community-building work, the creating-alternatives work — without completely rejecting the false promises and mythologies of respectability politics and its cousin, “civil discourse.”

Public stimming is beautiful, and we should keep doing it.

Dr. Loftis also writes against certain forms of public stimming for an audience, which I’ll quote here at length before responding:

[begin quote — internal paragraph breaks added]

I do think that Autistic activists need to think carefully about our intention, motivation, and goals in the public performance of stimming. When I see other Autistics performing authentic stimming in public (stimming that can’t be controlled, or stimming that expresses joy, or stimming that relieves anxiety), I am proud of them and joyful with them.

But sometimes I have also seen activists engaged in stimming that was not authentic — stimming deliberately used to get attention or to make a statement. I’m not sure if this staged stimming is good and true: I’m not even sure if it could properly be called “stimming” (if stimming becomes divorced from its joy, its delicious rush, its natural high, is it still stimming?). And when we aren’t stimming for joy, because our bodies want and need it, because it is physically releasing us from neurotypical oppression (the rule of quiet hands), then who or what are we stimming for?

I think that our public stimming (like our private stimming) should be real and true (and not masquerade). It troubles me to see stimming that has an agenda and is divorced from authentic Autistic emotion, from authentic Autistic body language, from an authentic Autistic experience. I’m not telling you where and when and why to stim. (Don’t ever let anyone tell you that.)

I’m calling for us, as individuals, to reflect on our motivations for public displays of stimming — particularly when we are deliberately choosing stimming as a mode of communication aimed at a neurotypical audience . If our primary audience is neurotypical, we must remember that stimming does not signify in the majority neurotypical culture what stimming signifies in the Autistic sub-culture. Are we always sending the right message, via the right medium, to the right audience? In short, stim loud and proud (and authentically and thoughtfully and joyfully).

[end quote]

I wrote an article titled “Autism isn't speaking: Autistic subversion in media and public policy” in a book published last year (Barriers and Belonging: Personal Narratives of Disability). Part of my article discussed how and why I deliberately choose to stim by hand-flapping and sometimes rocking, in public spaces. I did not hand-flap or rock intuitively as a child. I did not start to do so until I was well into college, and by then it was always a conscious, deliberate choice. This does not make stimming any less authentic than it is for someone who has always done it their entire life.

Stimming is enjoying the physical, proprioceptive, sensory movement and input, or using it to modulate or self-regulate. We know from experience and community narratives that autistic people stim (in various ways) for various reasons, including because of anxiety, because of anger, because of sadness, because of overstimulation, and because of joy. We know it is inherently communicative, even if the communication is not understood/received by the audience.

When those of us who choose to publicly and intentionally stim do so, we are not inauthentic or fake, but we are giving ourselves permission to enjoy bodily movement forms that are peculiarly (though of course not exclusively) autistic, and to incorporate them into our palate of expressive communication and self-regulation. Doing so for political reasons does not ignore that neurotypical and other non-autistic people will almost certainly misinterpret it, or attribute horrible ableist meanings to it, but rather, is a direct discursive challenge to that kind of ableism.

It is a political choice, because it is choosing to be openly and unapologetically autistic. Being neurodivergent in public, ever, is putting oneself at risk. And if we’re choosing to stim in public in a way we didn’t do intuitively earlier in life (or had deliberately beaten or ABA’d out of us, in some cases), we are of course aware of and assuming that risk. We talk about the concept of “dignity of risk” in self-advocacy for a reason.

My chapter from Barriers and Belonging mentioned a discussion I had a friend who is a convert/revert to Islam from a white Christian family. That friend told me that she chooses to wear a hijab (a head scarf) not because she believes that wearing a hijab is either mandatory for Muslim women or that it is inherently more modest than not wearing one, but rather because it is a publicly recognizable symbol of Muslim identity (Muslimah identity in particular). Her choice to wear hijab despite not believing it is mandatory or morally preferable, is a political one. It is “performative” in the sense that it communicates and performs something for public reception/consumption/spectacle, by choice of the person doing so. But performative does not mean inauthentic, let alone that it undermines others in the same community.

Similarly, I choose to hand-flap and rock in some public spaces, in front of neurotypical and other allistic people not because I am oblivious to the implications of it, but because I am keenly aware of the implications in a neurotypical-dominant society, and I choose to defy them. (Of course, this is also a privilege, as a light-skinned East Asian person, who is unlikely to be criminalized as a drug user or dangerously violent person for stimming and then put at risk of being shot and killed. But that does not mean I should refrain from all public stimming either. Visibility is not a worthy goal in and of itself. But there are many ways to challenge prevailing ideas and values.)

That's not to say public, intentional stimming is for everyone, or that it's the best or most important tactic to use to challenge ableist ideas about autism and neurodivergence in general. I value all tactics and contributions, and this is simply one of them.

Integrating neurodiversity with disability justice does not require a pure social model, and never did.

Dr. Loftis’s article further challenges the neurodiversity movement — rooted in the autistic community, though of course by no means unique to autism — by arguing against a pure social model of disability for autism. Her implication is that the neurodiversity movement overall adopts an uncritical version of a pure social model of disability, while she argues that “[a]utism will never be completely de-pathologized — nor should it be.”

I don’t believe in a pure constructivism (pure social model) approach to any disability, though I do believe strongly in the need to depathologize autism.

The reality is that being an autistic person sometimes hurts and sucks, and would probably still hurt and suck at least sometimes even if the rest of the world were actually maximally accommodating and understanding and accessible and universally designed (though it would certainly be a lot less often, and possibly less severe). That reality doesn’t undermine the core tenets of the neurodiversity movement, though. Celebrating being autistic doesn’t mean adopting a false, oversimplified view of autism as only sunshine and rainbows and unicorns.

The neurodiversity movement is not about — or at least, it shouldn’t be about — rejecting every narrative or testimony or discussion of things that hurt or suck about being autistic. Depathologizing autism — or any disability — is not about stripping lived realities from our understanding of that disability, or denying the full breadth and depth of narratives of those with lived experience, or refusing to engage with rhetoric of pain, suffering, treatment, or cure. (Eli Clare writes eloquently on this topic in his new book Brilliant Imperfection: Grappling with Cure.) What it is about is ridding autism, or disability in general, of the notion of inherent lack, brokenness, or defect. Many autistic activists in the neurodiversity movement have said this, in hundreds of different ways, for decades. It’s not a new concept.

Recognizing being autistic as who we are (identity) and how we exist in the world (experience, including negative, painful, and unwanted experiences) are not mutually exclusive or contradictory. Neurodiversity and Disability Justice, taken together, are indeed celebrations of who we are and how we exist in the world. They are also movements rooted in lived experience, which ask us to understand and engage with the many ways we relate to our bodies and brains, inside our own minds, and in social context.  

Taking our shoes off and raising our fists up.

As a young law graduate beginning legal work in a position where I will be responsible for legal advocacy for disabled children and youth facing all manner of violences in schools, I understand intimately the need for strategic and targeted “professionalism” in certain venues for specific reasons, by those of us who are able to be in and who choose to work in those venues.

But as an organizer and an advocate, I will always push for our movement as a whole to take our shoes off wherever we can (because our comfort is in fact important and valuable for its own sake), and keep raising our fists up.

Dr. Loftis writes, “We have protests to stage and speeches to make and hearts to change. We have cultural narratives to rewrite. We have autistic children to save. It is going to be a long and hard road.”

Yes. We have protests to stage, driven by the fuel of our righteous anger. We have speeches to make, written from the soaring pleas of our individual and collective trauma, and our wildest dreams of joy and freedom and love. We have cultural narratives to rewrite because they really do hate us and they really will kill us, and if we’re going to rewrite the narratives, then there’s no reason to hold ourselves back from our most radical and defiant rewritings. We have autistic children who need us to support them as architects of their own liberation against the schools and clinicians and institutions and police and prosecutors who would crush and destroy them.

We’re going to need our anger and our public celebrations of stimming and our complicated, imperfect, messy selves for this long and hard road, because we need all of us, and all of our tactics and strategies, to keep a movement going and ultimately, to win.