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.
x

4 comments:

  1. Fascinating as usual. I've missed your posts.

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  2. Lydia, it's good to read your words again after your law school hiatus! It creeps me out when I read someone, like Dr. Loftis, essentially using "weasel" phrases--be yourself, except check yourself when being yourself to make certain you are authentic enough to be yourself......smacks of hypocrisy or not having the guts to come out and say "Your autistic authenticity makes me fear for what will happen if you behave authentically". Thank you for your clarifying statement about how she takes your writing out of context----and for writing on with your encouraging words. Let us by all means go shoeless if we wish, and my fist has been raised pretty much my whole life. Thanks for putting some energy out there to help me, and us, keep it/them in the air. -Barb Koumjian (not really anonymous, just the only option listed that worked to let me comment!)

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  3. Yet again, I find your writing and views contemplative and enlightening. By and large, my philosophy aligns with yours, but you still nearly always write something that challenges my perceptions and forces me to look at things from new angles with new emphases. This is a precious gift you give to your audiences, and I am deeply grateful for it.

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  4. And stimming is not a choice for many - it’s an inherent mode of being in the world!

    Anger in the way you raise is centred on love. I am angry because I love so much. Adam, as well, is angry. I am always in awe with the way his anger is measured in the sense that he knows his life depends on others. If only the world would understand how important this is, this survival, this interdependence. We send forth our anger in the wings of love.

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Hi! Thank you for sharing your thoughts with me. I manually approve comments, so sometimes it takes a few weeks, months, or even years to find and approve comments. This delay is normal. (Note that I also don't publish every comment, since this is my personal blog.) Unfortunately, anonymous commenting isn't available anymore since it resulted in over one million spam comments in a short period.