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:

(A) 
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.

(B)
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.

(C) 
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.

(D)
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.
x

02 March 2018

They keep publishing these violent articles

Content/TW: Abuse. Physical and emotional. Restraint. Deliberate causing trauma. 

I am livid.

Shaking with rage.

There's this essay going around, in the Washington Post, hailed as brave and courageous.

A non autistic mother of an autistic young person wrote, triumphantly, about the time ten years ago she physically forced her kid into a crowded arena to see a show featuring one of their favorite characters, not despite their terror of big crowded indoor places but because of it so she could forcibly expose them to it. She physically restrained her kid, who was having a meltdown and maybe a panic attack, in public to forcibly drag them into the arena and even, laughably and horrifically, invoked the A D fucking A to claim she was somehow being "a reasonable accommodation" (this is eleven kinds of twisted) by carrying them in against their will.

She recounts other parents as aghast at her behavior and dismisses them as ignorant by loudly proclaiming that her kid has autism (because that's a get out of jail free card for abuse), when another parent is literally telling her it's obvious her kid doesn't want to go and she should drop it. (The other parents were upset not because they don't understand autism but because, shock, they were minimally decent people who recognized abuse when they witnessed it.)

She literally described the moment her kid got inside the arena as being "indistinguishable from his peers."

That is the exact phrase word for word that Ole Ivaar Lovaas used to describe the goal of behaviorism. To make us indistinguishable from our peers (by stamping out the autistic) (by shocking our feet in water) (by punishing us for displaying autistic traits and rewarding us for supressing our natural selves). He founded what we know now as ABA, the supposedly evidence-based treatment for autism that every single autistic adult I know who survived it describes as abuse so traumatic they ALL have PTSD or CPTSD from it.

And she literally calls her kid and every other autistic young person "a burden." Yes. She out and says it, directly. What we know most of you all already believe but think it's politically incorrect to voice. (It's not. It's normal.)

I won't dignify that article by linking to it here.

This parent is publishing a book. The title is Autism Uncensored, as if to imply that what she's got is the real deal instead of euphemistic autism prettified by buzzwords like neurodiversity which really must just apply to the supposedly "high functioning" and "mildly affected" (there is no such thing). I am so scared and angry for her kid (who she proudly brags that she has further tortured by forcibly dragging them to many more scary overwhelming huge indoor spaces), and terrified for what it will do to the many autistic young people whose parents will read it and consider doing the same.

Every time you think we have gotten somewhere, we must be reminded, quite violently, we have not. This kind of bile is still worthy of publication more than ten years after I Am Autism and Autism Every Day, and it never really went anywhere in the meantime.

All these horrifyingly ableist parents seem to be wealthy, white, and resourced enough to get these books published and profit enormously off of abusing and exploiting their kids, and other than Temple Grandin and John Elder Robison (who have made clear they are not invested in our community), where is that support for cultural work by actually autistic people? Books and memoirs and fiction and chapbooks we've created about autism as autistic people? That's right. Nowhere. Nothing.

Back to business as usual.

I dread March 1 next year because I know the list will only grow longer. People like this are only worsening the conditions that will get us there.

07 December 2017

Why we must #BoycottToSiri / An open letter to Judith Newman

Content/TW: Discussions of involuntary sterilization, abusive parenting, mentions of Nazis, eugenics, intense anti-autistic ableism in general.

Why we must #BoycottToSiri

I originally wrote what appears below as a series of tweets, but they read better as a single letter. This is meant for Judith Newman, though I have no idea whether she will ever bother to read this blog post, and frankly, I would be terrified of whatever response she might have. But this must be said, by as many of us as can summon the courage to speak or write or sign it, and so here I am, urging anyone who wishes to do something to support actually autistic people not to buy this book written by a non-autistic parent of an autistic teen, in which (among many other horrifying things) she enthusiastically advocates for sterilizing her son and other autistic people to prevent us from reproducing and fulfilling our inevitable destiny to be naturally shitty parents (her ideas, not mine).

She said that she is "counting the days" until her son turns eighteen so she can gain medical power of attorney and have him sterilized. She described in graphic detail the contents and types of porn that he watches. She said that she can only imagine him ever having sex with the Benny Hill soundtrack playing along with her mental image of it, and that that means it would have to be going horribly wrong. She said that he will die alone because no girl (assuming he must be heterosexual and only interested in girls/women) could ever want him. She said he is immature (HE IS THIRTEEN, CHRIST) and so would never be able to be a good parent. She said he could never be a loving partner (assuming he wants romance now or will in the future) because he is incapable of separating other people's needs from his own, let alone putting others before himself.

This even apart from her misogynistic description and misgendering of Métis autistic activist Amythest Schaber without their consent, and her vehement objections to use of singular they as a gender-neutral pronoun in the introduction to this book (totally unrelated? hello?) while mentioning that she would like to punch her friend (who authored a book affirming and supporting her trans child) in the face for advocating for its use.

Yes, it is that bad.

[photo: graphic with image of an open notebook-style journal, full cup of coffee, and pencil on a wooden table or desk as the background. small text on the notebook says in all capital letters, "Letter to Judith Newman" and "Why We Must #BoycottToSiri." large text on the notebook says in a script, handwriting-like font, "all of this is fucked." large text at the bottom of the graphic says, "There is not enough caffeine in the world for me to deal with this shit."]

An open letter to Judith Newman:

Autistic people are human beings. We can and must make our own medical choices, especially about procedures as invasive and permanent as sterilization.

Forcible/involuntary sterilization because you're afraid of someone like me reproducing? Direct and clear example of modern eugenics.

You can't imagine your son in a sexual situation because he is autistic? You have a serious lack of imagination. Autistic people span the entire sexual and asexual spectrums.

You publicly talked about what kind of porn your son watches. In a New York Times "bestseller." I am so, so horrified, angry, and betrayed on behalf of your son.

You are convinced your son will die alone because no girl could ever possibly be interested in him. That is blatant, horrifying ableism.

You are counting down the days until you can involuntarily sterilize your son, which you want to do because he is autistic. I hope he escapes your house.

This time next year, I'll be a licensed attorney. Many actually autistic and other disabled people are too. Believe you me, we will line up to fight you if you try this against his will.

I am TERRIFIED for your son, because he has to live with you. Your book shows your true self. What kind of parent you are. What kind of person you are. And it's scary as fuck.

Your son needs love and support. Not mockery, public humiliation, condescension, and threats of involuntary, invasive, and permanent medical procedures.

How the hell do you expect your son to learn to be a loving partner to a woman, a man, or a non-binary person, if you already assume he can't be? You are supposed to teach him!

You wrote that you don't believe your son is or ever will be capable of putting other people's feelings ahead of his own. I read that and am sick to my stomach.

I'm an actually autistic adult, and I feel such overwhelmingly intense empathy for YOUR SON that I am crying thinking of what it must be like to be him knowing/finding out you've written this bullshit about him in public.

Do you know about Micah David Cole-Fletcher? He is an autistic poet and a hero in Portland, Oregon. He got stabbed because he stood up to white supremacists abusing two women of color. Two others were murdered.

READ.

We actually autistic people are constantly scrambling with extremely limited resources and the challenges of multiple disabilities to save each other from eviction, institutionalization, and abuse, every day.

That's autistic empathy.

Every day I know of actually autistic people, most of whom will never get news media coverage, sacrificing every second of their time and every bit of their available effort, to fight against violence and harm.

When you describe your son as lacking in empathy, compassion, and the ability to put others before himself, you directly attack the core integrity of some of the most self-sacrificing humans on this planet.

What about Jennifer Msumba's courage in speaking up against the JRC for torturing disabled people? Of facing the very people who abused her and still justify it, because it might get others out and make the torture stop?

That's autistic empathy.

Look, every autistic person will not have a romantic or sexual relationship in their lifetimes. But that's not either a core trait of being autistic, nor is it a reflection of lesser personhood.

The point that I am trying to make, that I sincerely doubt you will ever be willing to listen to (but yet hope against hope you will), is that your son is a full human being.

Not despite autism.

He is autistic and human and these are not contradictory.

One day, if he hasn't yet, your son will read what you wrote about him, publicly, and my heart breaks for him for when that day comes.

This is betrayal.

This is betrayal.

This is betrayal.

You wrote that your son should not reproduce because he could never be a father. This is wrong.

Autistic people around the globe are already proud, loving parents of children -- autistic and non-autistic. Being autistic does not mean we cannot love or care.

An autistic person dropped everything and drove three hours nonstop to get to me when I was in the middle of a mental health crisis.

(And surely you must know how much we hate interruptions to routine/sudden changes.)

That's autistic love and care.

I know an autistic person dedicated to finding and supporting the most isolated human beings locked in inhumane conditions in prisons with no budget and no donors, traveling from prison to prison in the face of violence.

That's autistic love and care.

My partner (also autistic) and I drove 18+ hours through 8 states to support two other human beings in getting to a safe place to live and escaping homelessness.

We don't want praise or money. Just to do what's right.

That's autistic love and care.

I know an autistic person with multiple disabilities and chronic illnesses who performed life-saving labor for another disabled person who was almost left for dead, even at the expense of their own physical health.

That's autistic love and care.

You say your son cannot be a father or a loving partner because he can't love or care for others. Because he can't put others before himself. If he still loves you after finding out about this horror show of a book, he will have already proved you wrong.

You say he should not father a child because he is immature. Do you realize how many grown-ass, NON-DISABLED men are out there with children who are immature/unempathetic as fuck? (Hint: Some of them are called Senator and Representative. One's called President.)

As an autistic human being, I am enraged and devastated at Harper Books' decision to publish this garbage. Because it's not only your son this has/will hurt. It's many, many more autistic people whose parents will read it.

I teach a college course on disability police and social movements. In one unit, we discuss in brutal, graphic detail the long and continuing history of involuntary sterilizations of disabled people, PoC, and disabled PoC specifically. It's called eugenics.

The idea that disabled people are incapable of parenting, shouldn't reproduce more disabled people, and shouldn't be having sex ... That's called eugenics. It's the very same idea that led to the Nazi's T-4 program. They called us "useless eaters."

You know who else thought we shouldn't be reproducing? The mass murderer in Sagamihara, Japan, who last year stabbed 19 disabled people to death and injured 26 more. He said he wanted to rid the world of us.

You think you're nothing like him but you're wrong.

Here's what you share:

* A belief that disabled people cannot be full human beings

* A belief that disabled people shouldn't be reproducing

The difference is that he stabbed people. You wrote a book with these ideas. But I'm afraid others might be inspired.

Now I know that on the off-chance you ever read these messages, your first reaction will be to tell me how mean I am. (Because you get to be upset if I'm harsh, but I'm just mean because I obviously lack empathy and social skills. /sarcasm, of course)

Your second response will be to tell me that I'm nothing like your child. You will tell me that I'm articulate, intelligent, obviously functional, and successful. You will say that I have a very mild form of autism.

These are ableist distractions.

No, I don't know your son personally. No, I have not lived in the same house as him. But I have lived in a harsh, violent world my entire life with a brain very much like his. (And I'm older than your son. By about ten years.)

The truth is, no matter what specific struggles or skills I have, I'm autistic like your son, and you ... you are not. I am like your child.

I cannot comprehend why or how someone who is supposed to love me the most could hurt/hate me so much.

You may believe you love your son. But we, autistic people, hear what you have actually said, which is that you hate him. You love a version of him that does not exist.

(Learn from Jim Sinclair.)

You have put something incredibly, horrifyingly dangerous into the world. You can't take it back, not completely. But you can and must make amends for your flagrant abuse of your privilege, power, and resources.

For the sake of your son.

For the sake of others like him.

For the sake of those to come after him.

We deserve to live free of fear of violence, especially from the people who are most supposed to love and protect us.

And make no mistake -- forcible, involuntary sterilization, and legal authority over another person's medical decision-making, these are forms of violence.

You are plotting to take away your son's right to control his own body.

You are plotting to become the biggest, worst, and most inescapable abuser in your son's life.

You still have a chance to stop and backtrack. To be a supportive, actually loving parent.

But your window of time is shrinking, fast.

You need to start with apologizing to your son and coming clean about what you've done if he doesn't know already.

And then you need to do your damndest to combat the dangerous messages you've put out there in the world.

You need to make sure that your son knows that he and he alone controls his own body.

He and he alone gets to decide what, whether, when, and how other people can do anything to him -- sexually, medically, reproductively.

That means apologizing for violating any tiny sense of privacy he might have ever had.

That means apologizing for thinking of him as less than a full person.

That means apologizing for publicly humiliating and mocking him.

That means connecting him, ASAP, to autistic adults who can mentor and support him coming into adulthood as an autistic teen.

That means making sure he gets real, meaningful sex education about reproductive choices, reproductive healthcare, and what consent is.

That means promising to him and to yourself that you will not be counting the days until you can legally steal from your son his right to control his own body.

(Yes I am stuck on that. Because it's disgusting and morally appalling.)

If you want to show to your son how to put others' feelings ahead of their own, retract the book. Demand the publisher ice it. Forgo the royalties, the speaking engagements, the press.

Put your son ahead of yourself. Put his dignity and his humanity first.

If you still want to write another book later, let it be an honest book. Let it be a book where your son is humanized instead of dehumanized and mocked. Let it be a book where you are a flawed human instead of a hero/saint/angel/martyr.

Until you are ready to accept full responsibility for what you have done to autistic people present and future as well as your own son, and take appropriate action to rectify it, we have nothing further to discuss.

I will take my rage and weeping apart from you.

________________

Interested in putting $$$ where it counts?

Harriet Tubman Collective @HTCsolidarity: badass group of Black Deaf and Disabled organizers

Autism Women's Network @autism_women: intersectional powerhouse/support network

HEARD: @behearddc: fights Deaf wrongful convictions and coordinating community trainings

Autistic Self Advocacy Network @autselfadvocacy: leader in D.C. policy advocacy

Disability Visibility Project @DisVisibility: amplification of disabled activism

Ramp Your Voice @RampYourVoice: Black disabled woman-centric project

NOS Magazine @NOSeditorial: magazine by/for neurodivergent writers and language access

Disability Rights Education and Defense Fund @DREDF and Bazelon Center for Mental Health Law @BazelonCenter: cutting-edge legal advocacy

Sins Invalid @sinsinvalid: performance project centering sick/disabled QTPOC

Krip Hop Nation @kriphopnation: PoC-centric disabled cultural activism via hip-hop

Barking Sycamores @BarkingSycamore and Deaf Poets Society @thedeafpoets: Disabled/neurodivergent/Deaf literary ventures

Bay Area Transformative Justice Collective (contact Mia Mingus @miamingus)

Ala Costa Adult Transition Services @alacostaACAT: direct services agency run by autistic adults

National ADAPT @NationalADAPT: grassroots direct action against harmful legislation (saved Medicaid repeatedly)

National LGBTQ Task Force @TheTaskForce: First LGBTQ+ org hosting disability justice project led by disabled TWOC

Sylvia Rivera Law Project @SRLP: legal advocacy for low-income, people of color, immigrant, and incarcerated TGNC folks

Autism Spectrum Navigators at Bellevue College @BellevueCollege: peer support/full integration/autistic culture symposium

All the Weight of Our Dreams: On Living Racialized Autism edited by Lydia X. Z. Brown, E. Ashkenazy, and Morénike Giwa Onaiwu: first anthology by autistic racialized and people of color

Disability Intersectionality Summit: what it says on tin/contact @IntersectedCrip

Alliance for Citizen Directed Supports @CitizenDirected: association for real community integration and self-determination for ALL people with intellectual and developmental disabilities

Another awesome publisher centering multiply-marginalized #OwnVoices: Cuil Press @CuilPress led by disabled founder Michón Neal

Columbia Lighthouse for the Blind @ColumbiaLight direct peer-led services for Blind/DeafBlind/Blind+Disabled people

Youth Organizing YO! Disabled and Proud @Yodisabledproud: disabled youth leadership+empowerment

And lastly, if you're reading this, learned something, and have privilege and money? Consider donating to support me and my work (much of which I do not broadcast publicly but directly benefits/supports marginalized people). PayPal Lydia at autistichoya dot com.

________________

(Note -- in writing the original tweets, I was torn between naming people without their consent, versus describing them without naming them to avoid potentially unwanted naming/outing/visibility -- which itself can often be dangerous, exploitative, and abusive. I erred toward not naming people since I did not have time or spoons to ask each person I was thinking of for their consent. Where people are named, it is because they have already spoken/written/been described very publicly and as an autistic person.)