04 April 2016

Hello, internalized ableism

Content/TW: Internalized ableism, passing for neurotypical, not passing for neurotypical.

Hello, internalized ableism

I don't believe in the ableist, classist hierarchy that treats autistic people as "legitimately autistic" only if they have an on-paper diagnosis while other autistic people are treated dubiously and with suspicion if they self-identify without (obtaining) an on-paper diagnosis. That hierarchy privileges the medical/psychiatric-industrial complex as the sole arbiter of autistic identity and experience. (In other words, only considering someone to be a "real" autistic person if they have a paper diagnosis means that you believe that only medical/psychiatric professionals can define who counts as autistic.) That hierarchy also privileges those who have class privilege, especially compounded by other forms of privilege. Class-privileged white people, for example, are more likely to have the resources necessary to access a paper diagnosis, than lower-income people and people of color, and especially low-income people of color.

Others have written extensively on the issue of privileging paper diagnoses and marginalizing self-identified people, most famously in the letter "Who Can Call Themselves Autistic?" penned more than ten years ago by some of the greats in the autistic movement. I won't linger long on that topic of conversation.

I wanted to preface this post with that caveat on diagnosis and self-identification because I'm starting my story here (and I'm unapologetically autistic in the way this story unwinds, which is to say, it's both extremely linear, logical, and intuitive all at once, and not at all):

I received a paper diagnosis through a neuropsychological evaluation when I was in eighth grade. (At the time the label used in my evaluation was "Asperger's" but I identify myself as autistic because I believe in creating solidarity among autistic people rather than reinforcing artificial divisions between autistic people based on ableist ideas about which types of autistic people are acceptable or desirable versus not.)

From the time I was a small child, I never quite fit in with other children my own age, whether with other Chinese American children or with children in my classes or with children in my childhood church. I was painfully slow on the uptake when figuring out that people I thought were nice to me or were my friends were actually treating me like shit.

But somewhere between the time I received the autistic diagnosis and now, I had fallen into a kind of complacency in my young adulthood (I'm in law school now) as a disability activist about my own disabled identity and experiences. From believing that autism was something to be ashamed of (and that would result in my classmates bullying me even more if they found out) to actively organizing protests against organizations like Autism Speaks for eugenicist cure rhetoric, I've now settled comfortably into a role as a Professional Activist TM.

(What is a career activist anyway? How horrifically has the nonprofit industrial complex injected social movements with white supremacist capitalism?)

Part of my work nowadays brings me across the United States to speak at colleges and conferences and with all sorts of other groups interested in anti-ableism training. I talk about privilege a lot and one of the types of privilege that I discuss is passing privilege -- maybe better termed "being less fucked." I talk about hidden disabilities versus apparent disabilities, and how sometimes, a particular person might be apparently disabled but at other times they're not. (Someone who uses a wheelchair might not be apparently disabled while lying in bed. Someone autistic might not be apparently disabled in a still photograph taken when they weren't stimming. These are still maybes and don't account for more complicated experiences.)

I use myself as an example, especially in casual conversation. I tell people that I generally pass for neurotypical and that to most people, especially those who aren't terribly familiar with autistic people, my disabilities are fairly hidden.

(Maybe sometimes I'm giving this long introduction or caveat for my own existence as a way of trying to navigate the double bind we're often placed into as disabled people -- if you're "high-functioning" you can't speak for the really disabled people; if you're "low-functioning," those must not be your ideas at all! -- and avoid the accusations that I'm a not-really-disabled person profiting off of "really" disabled people.)

But lately, I'm coming face to face with the realization that I'm wrong about whether, to what extent, and how often I pass for neurotypical. I'm realizing that even if I don't identify myself as disabled or autistic, other people still read me as "different" and that as much as my gender identity, (a)sexuality, and race might contribute to that perception, my disability is an inextricable part of the equation. Years after receiving a paper diagnosis and winding my way through layer after layer of educational privilege where I thought I might be perceived as somewhat weird but not fundamentally deviant, I find that other people still intuitively peg me as some kind of neurodivergent (whether or not they know that word) and often attach negative aspersions to that perception.

And frankly, that's scary.

Photo: Young east asian person (Lydia Brown) in pale green pantsuit standing to ask a question in a room full of seated people, some of whom are also disabled in various ways. From the first White House event on the intersection of LGBTQI and disabled experiences in June 2014. Photo by Patrick Cokley.

It's scary, sure, because it means I could face discrimination I didn't think I might have to deal with (being relatively less fucked if able to pass for not-disabled), because it means I could be read more easily as a target for potential violence (given the rates of all forms of violence against cognitively and developmentally disabled people, especially those read as feminine or women), because it means I am more visible than I realized and visibility itself also means violence.

But it's also scary because I'm becoming intimately acquainted with my own internalized ableism in all the little dark crevices in corners of my mind I forgot existed and haven't thought to check, and I can't shake the immediate thoughts that I should try harder not to seem so autistic in public or else what am I doing wrong that other people can tell? Essentially, I'm finding that my reactions to this ongoing realization of just how much my neurodivergence shows are that there is something wrong and that I should feel ashamed and self-conscious if (non-autistic) people can tell that I'm autistic. For all the time I've spent in conversation with other disabled people -- and autistic people in particular -- about ableism and neurodivergence and neurodiversity and radical disability, I have never stamped it all out.

We build cultures of perfection in activist spaces. This is not unique to autistic or disabled spaces. Purity politics pervade activist and social justice spaces. Call-out culture demands that in the rush to create safe spaces, we shut people out and throw them away if they fuck up once. (This is not about forgiving privileged people for repeatedly entitled or outright abusive behavior targeting marginalized people. This is about disposability politics.) We're constantly competing for limited resources ("likes" and "reblogs" and "retweets," all the twenty-first century trappings of social capital -- and that word "capital" is critically important), trying to be better activists, always on, always saying the right thing. We give pithy acknowledgements of privilege and past ignorance/fuck-ups, but functionally act as though in the present time, we no longer fuck up because now we're Educated. That it is our duty to jump down each other's throats at the slightest mistake or misphrasing -- ignoring the completely classist, racist, and ableist implications of expecting people to always say the right thing and never accidentally say the wrong thing or not know the correct terms.

All we've done is replicated the painful violence of white supremacist, (cis-hetero) patriarchal capitalism in supposedly revolutionary, transformative, liberatory spaces.

All we've done is take the practices we find harmful and do the exact same things to each other.

We've created activist cultures where it is not acceptable to talk about ongoing struggles with internalized ableism, yet we expect autistic and other disabled people doing disability movement work to be politically perfect (that is, to have no traces anymore of any internalized ableism.)

We have created a mirror image of the "overcoming" supercrip/inspoporn narrative we all hate:

Ambika was diagnosed with autism, but she went to social skills class and occupational therapy and tried so very hard to succeed despite autism and now she's in medical school and has overcome all of the autism-related deficits that predicted she would never make it this far! 

Now we have a different "overcoming" story and it's just as toxic:

Ayodele was an autistic teenager when he first met autistic neurodiversity activists, and then he started going to anti-Autism Speaks protests and local ASAN chapter meetings, and writing his own blog on Tumblr and now he's working for a national disability rights organization and has overcome all of his internalized ableism from being in the self-contained special ed classroom! 

Yet no one seems to notice the painful irony of exactly how similar these narratives are -- though we condemn one and exalt the other.

So where are our spaces where we can heal not just from the trauma inflicted on us by others but also from the ongoing trauma we inflict on ourselves? Where can we be vulnerable, truly vulnerable, without fearing the consequences of enforced ostracism from "safe spaces" that privilege an ableist facade of having-it-together and overcoming-internalized-oppression?

So here I am, feeling very much at the edge and isolated from most autistic spaces these days, trying to reach my tendrils through dark corners of webspace in the hopes of reaching those of you who, like me, are struggling to uproot our own internalized ableism while maintaining the public facade of impenetrability.

Hello, internalized ableism. I don't miss you and I don't like you very much at all. 

Hello, internalized ableism. You seem to be very comfortable inside my mind, but I think it's time for you to start packing and moving out -- for good. 

Hello, internalized ableism. You know me far, far too well. You're hardly a stranger here. 

Hello, internalized ableism. You're living in my brain and I can't ignore your presence anymore.


  1. I don't pretend that facade anymore, but I also pay terribly for it. It makes me a target and makes attacking me acceptable.

    I deeply appreciate your work and your voice.

  2. Hi Lydia:

    this really folds in with the TOO MUCH INFORMATION [National Autistic Society: 2016] campaign which shows us that some three-quarters of Autistic people change their behaviours in public.

    Love the italicised words about internalised ableism especially how it lives in your brain.

    Activism and that "overcoming story".

    "Disposability politics".

    And the thing about social capital in the 21st century with likes and retweets and weblogs...

  3. Thank you for this, Lydia.

    You write that you are feeling very much on the edge and isolated from most Autistic spaces, and are reaching out.

    If I may, I will reach back across literally and perhaps also metaphorically, an ocean.

    I grew up (I'm some years older than you) having not heard of Asperger syndrome (it's still in the books where I am), not understanding why I was isolated, not understanding the rules and certainly not understanding why they keep changing. Many of my efforts to reach out, and to pass, certainly broke social rules I was unaware of, and almost certainly still do. I'm now terrified not only to associate with broader society, but also with those spaces supposedly dedicated to overcoming oppressive structures.

    I certainly come across as neurodivergent, and this intimidates some people, especially those more likely to be intimidated by a cis, Caucasian, educated male. I've been excluded from what I thought were safe spaces because of it - not because I broke gross rules such as "don't touch without asking" (I learned that in early adolescence), but because I can't read things like conversation flow and nonverbal communication, for all my endless, obsessive reading on the subject. I've also, more rarely, been the subject of physical violence.

    I don't want to make others, especially others suffering deliberate or unconscious oppression as a result of being *other* than a cis, Caucasian, educated male, uncomfortable as a result of my neurodiverence. That starts a cycle of violence (not usually physical, but certainly harmful) that results in someone being excluded or excluding themselves.

    I also don't know how to avoid fucking up over language. For example (and there are many examples, but I've had to pick one), can I call myself a feminist if:
    * I do not have direct personal experience of being a woman in a patriarchal society? Yes, I have been specifically criticised for this.
    * I accept the aims and objectives of feminism, but think that they need to be met as part of a broader dismantling of kyriarchical structures, including those involved in everything from international relations, to the way we as humans relate to other species and to the broader living world? In that sense I accept the *necessity* of female equality, and always endeavour to work towards that, but *not necessarily its primacy*.

    I may not be a feminist, depending on your definition, but I will always try to be a good ally. Sadly, that seems to mean not engaging directly with women in order to avoid them being intimidated by my neurodivergence. At its simplest, not making "proper" eye contact is "creepy".

    I think what I'm getting at is not just that I'm trying to face down my own internalised ableism, although this is true, but a disconnect, even alienation, from not just mainstream spaces but from spaces in which I'd hope to find mutual allies. In any case, most of them seem to be in spaces that are too damn busy and too damn noisy (and often soaked in alcohol - drunk neurotypicals seem to be even less predictable than sober ones - and seem to invariably make more noise).

    So, I'm reaching back. I have no idea whether it's desired or "Appropriate" for me to contact you directly, but our experiences have some overlap, even where much is clearly different.

    I am confident I'd be deeply honoured to be your friend.

    May you always have ink in your pen.

  4. Thank you so much for this. It is beautiful and devastating and grievous and true.

  5. Thank you so much for this post! I think you said it really well. Internalized ableism is a dark truth. I want a better world of respect and tolerance, and yet I rarely stim in public. I want you autistic girls to grow up empowered and like they should and will be accepted for who they authentically are (that they don't need to self-sensor) ... but then I actively engage in self-sensoring.

  6. There's that constant sense of having to prove oneself (pass for neurotypical, or pass for autistic-who's-totally-embraced-their-autistic-identity-untainted-by-internalized-ableism-and-crushing-moments-of-self-doubt).


    When I'm with others and ask that we go to a quieter location I'm caught between guilt that 'I wouldn't need to ask this if I wasn't a very, very nose-sensitive autistic', and guilt that I feel guilt (after all, I'm just constructively expressing my needs, and isn't that what a totally-got-it-together advocate should be doing with pride).

  7. I avoid hostile environments (and of course acknowledge my privilege in being able to do so). Among the hostile environments I avoid is the social justice movement — pretty much all of it. It's both good and brave of you to violate the taboo against pointing out that the social justice movement is, in fact, a hostile environment. Perhaps, over time and with your help, the social justice movement will become a LESS hostile environment.

    1. I agree, and I (mostly) avoid the social justice movement too, especially the American version of it. I thought no one else felt like that

  8. THIS to the hundredth power! Thank you so much!

  9. I totally agree 100% it's a daily battle made even more difficult by the way "passing" people treat those who are not passing. I don't think fighting amongst ourselves solves very much

  10. I totally gree 100% because internalized ableism is NOT easy to undo because of the fact that it starts when we are VERY young and even gets reinforced by our parents. it's not easy to overcome and it's a perpetual battle to be seen as whole and fully human in this ableist society.

  11. Five Finger Death Punch wrote a song that describes my sense of Internalized Ableism...it's called "Wrong Side of Heaven".

  12. powerful and well written

  13. Lydia, I had given up hope that someone of your calibre existed on this planet. A breath of fresh air, you are. I commend your courage in expressing (so eloquently) your confusion and clarity simultaneously.

    I often chuckle to myself that oh-so-enlightened NTs can sprout off at how encompassing they are, yet not give me the time of day because I leave them with a taste of weird. Should I waive my report in front of them, I guarantee I would be superficially tolerated. Ironically, some of the most openly misogynist, racist men I've encountered have been the most naturally accepting of me. It harks back to your summation, Lydia.

    Thank you. Please keep going.

  14. Thanks. The autism community is terrifying as a white upper middle class guy. Absolutely terrifying. Thank goodness for Steve Silberman's book. But yeah. Day one of looking into online communities I realized it was a hornets nest. The words I have to know and use properly, the teams I am declaring allegiance to with every sentence or left out sentence, the alt text on photos that is so long I'm pretty sure--this is not a mean joke--that it actually makes the page less comprehensible for me because of the way it breaks the rules I've worked hard to internalize around how images and text play together toward some end.

    I record stuff on my phone since no one wants to hear me talk as much as I like to talk (more like bat sonar than social behavior, more navigation that communication), and the things I hear myself say are like, thought crime, I just know it. But one good one is that the autism community is like a bunch of prisoners and prison guards (the guards are the oh so hated autism moms, like my wife who has MS and has lost a lot of her physical capacity since struggling to deal with her autistic son while separating from her suddenly-it's-so-clear-he's-autistic husband, me, who basically totally sucks at being a dad (specifically because we have twins and the NT one is insanely incomprehensible to me). The most dangerous person to a prisoner is probably other prisoners. The guards and the prisoners are all kind of in a weird context that promotes all kinds of unfortunate behavior. The whole thing is created by the society around it--which the prisoners and guards all ostensibly basically agree with. And my entire theory is based 100% on study of orange is the new black so I'm sure it's totally accurate.

    Fact is, we are just usually wrong about other people I think. It's interesting. The 1% are wrong about the 99%. The 99% are wrong about the 1%. Children are wrong about their parents and parents are wrong about their children.

    The thing I am excited about is that I do think autism is a particularly unique vehicle for driving societal change that I think I would describe as extremity highly evolved. Like, as a society, if we get to the point where we are figuring out how to exist and grow and have our unique differences and such while supporting other people's right to their own--AND our institutions and governments and corporations begin to promote a balance between scalability (monoculture) and diversity (culture?), that is a highly evolved, more kind and loving world. Autism as a thing in the mind of society is, I think, on a trajectory toward being more representative of that concept itself than of any particular set of symptoms or expressions of it.

    Most of all I just think that the suffering of others is real and we don't get it. The suffering of the hungry is real. The suffering of a billionaire is real. It really is.

    1. I don't engage in the autism community. I have my own internalized ableism I am still quite busy dealing with, that I don't want to project onto others. I don't want to increase the amount of ableism out there. I get the text under pictures captions for screen readers for blind or visually impaired folks. My brain the way it works makes text captions difficult for pictures. I think the autism community forgets people like this exist within it with diagnosable learning disorders or not or less picture orientated minds.

    2. Everything is complicated, for sure. A lot of autistic culture spaces are very text and internet heavy, which definitely leaves out a lot of our autistic siblings with intellectual/cognitive disabilities, many of whom aren't using the internet (for a variety of reasons, not just class privilege or lack thereof, or disability-related reasons, or being denied access by caregivers) or find text communication hard. I know many organizers and advocate with intellectual disabilities who very strongly prefer and use the phone for communication, networking, and organizing, and for many autistic people without intellectual disabilities, phones are hard if not impossible. So that's not to say one loosely-organized group is doing better than the other, but, it's so, so important to recognize how these dynamics affect who is in which spaces and who has access where.

  15. Thank you for writing this. I've been thinking about it a lot, and I wrote this as an extension of my own thoughts on the matter: https://visualvox.wordpress.com/2016/06/09/another-way-of-looking-at-aspie-autistic-interaction-frustration/

  16. I don't see how asking anyone for 'proof' of Autism is ableist, esp in the medical and legal communities. Those who declare Autism without an on-paper indication of it may in fact be non-Autistic with another condition that mocks it. Sensory processing disorder, selective mutism and OCD are the few examples cormorbid with Autism.

  17. I actually meant 'mistaken for' when I implied 'cormorbid with', though the two pair of phrases aren't exactly the same in definition.

    1. Though there are also a lot of folks who have co-occurring disabilities of sensory processing disorder AND autism, or selective mutism AND autism, etc. That's not always or necessarily the case, but it's actually pretty common too.

  18. Hi Lydia,

    This is a good article. When I was younger I had to work much harder than my cousins all of whom were NT / NT passing in order to earn my psychological freedom due to the special ed label which was misunderstood in the early '90s by my immigrant parents.

    Because if I did not achieve at a level that was as high as my other family members, I would be treated as a child forever like many mentally disabled people were in my parents' generation, and live with my family forever. I would never get to do the things I wanted to do.

    Growing up, I was overprotected and didn't get as much freedom as NT kids in my family. I was subjected to much more conservative parenting and harsher curfews and was told it was due to my "behavior".

    So I pushed myself to overachieve on the SAT, GPA, and in college, so that I could earn the right to do what I wanted and to get my own apartment to be rid of curfews, even though my mom cried when I moved out.

    Sometimes internalized ableism is a defense mechanism. For me it was the coin of Judas I used to buy my freedom.

  19. Interesting post on hierarchies
    in the autistic movement.
    I think the important thing
    is to keep working towards common

    I think the (fictive?) example of the austict person x who did alot of social skills classes and ocupational therapy to get into medical school.

    So if you think of me as the person who luggade home tons of books on the brain when studying computing science many years ago.

    Then my interest of the workings of the brain was reawoken when I got my ASD diagnosis im 2013 and truly awoken last year when I participtated in brain study in autism.

    So probably most neurotypical teacher would probably consider a high school teacher who post tons of stuff on LinkedIn on the brain even more than a medical student who did the same thing.

    I evolved alot socially when I studied
    teaching in college.

    If you would seem my obsessive interest in the brain as an incurable part of my asperger's syndrome I guess you could, because no ammount of social skills classes would erradicate this obsession.

    However while I am glad I have made lots of progress within social areas, my obsessive interests of the workings of the brain is nothing of which I was to be cured.

    And of course there are people who has outgrown the obsessive interests of ASD, the question is if the girl in your example did.

    If female aspie wish to be cured of their obsession more than male aspies is interesting to speculate in.

    Perhaps I am one of those extremely systems orientated aspies, however I can tell you that my true self really don't fit in with most aspies or neurotypicals which is

    why I have learned to adopt both when socializng with people who have neuropshyciatric conditions and neurotylicals alike :-)


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