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Yep, I’m disabled. Pfft.

September 14, 2011

Not surprisingly, with the whole “having trouble keeping yourself adequately fed” thing coming up (yet) again, I’ve been having to look at a couple more layers of internalized disablism and perfectionism lately. That’s not been the only prompt, but a damned effective one! With Mr. U off work, dealing with a renewed burst of “Must Not Appear Lazy and/or Mentally Ill” (with the not-so-subtle implication that this would mean not deserving much respect) has also brought me back around to these ideas.

Today, I mostly stayed lying in bed with the netbook for multiple reasons, and kept feeling irritatingly uncomfortable about not being up doing something like I should. So, I thought it was a good time to write about some of this stuff.

And I am realizing more and more how many of the messages I grew up accepting as true have fed my own “stinking’ thinkin'”. (Which an awful lot of people would, indeed, consider to be accurate, given my layers of “weirdness”.) And just how many layers and knots of that harmful thinking there are still hanging around; dealing with the PTSD reactions and trying to look at things more realistically is definitely a continuing process.

One of the biggest themes that keeps coming up? I should be able to do better. It’s OK if other people have reasonable limitations and try to accommodate them and figure out what actually works for them, but I just need to suck it up and Try Harder. It’s not like my problems are that bad, eh? Why do I keep making other people’s lives more difficult? And so on, and so forth. You may recognize this script, and had it directed at you too many times.

The thing is, in some ways my problems really are that bad. And that’s OK. Invisible disabilities are invisible. (To some. And not so much when they’re noticed and explained in some other unflattering way.) And while I recognize intellectually that, yeah, sane approaches to disability (and, erm, basic decency) apply to me too–I basically learned to gaslight and scapegoat myself, a little too well. The multiple variations on Impostor Syndrome are part and parcel of it, in which sometimes it feels like you’re barely managing to “pass”, no matter what you’re doing or what as. And a continual process is necessary, of catching the internalized emotional abuse when it starts up (because that’s really what it is) and reminding myself of this stuff.

As Ragen Chastain put it in You Gotta Give Them Hope–and this applies equally well to pretty much every area of human diversity:

I’m much more concerned that fat people know that they deserve to be treated well. It’s tough to lead a civil rights movement of people who aren’t sure that they deserve civil rights…

You deserve to be treated well right now, whether or not you are trying to conform to the cultural stereotype of beauty. You deserve respect, and you have the right to life, liberty and the pursuit of happiness. Right now. In the body in which you currently reside. Even if you want to eat differently or move more or whatever, I’m asking that you consider the possibility that your body is amazing and deserving of love and respect right this minute. Remember that no matter what your body looks like, there’s an extremely decent chance that you are the standard of beauty in some culture somewhere. Consider that the cure for social stigma is not weight loss, it’s ending social stigma. There are so many messages to the contrary that it is necessary to remind ourselves of this sometimes. No matter who or how we are, we deserve respect…

We gotta give them hope. We gotta give each other hope. There’s a light at the end of this crazy cultural stigma and shame tunnel it’s NOT a train!

Which brings me around to an excellent recent post from Savannah, at Cracked Mirror in Shalott: Inside and Outside Safety. It discusses some of the dangers of placing pressure on people to act “normal”, which are too rarely considered relevant–in an ends justify the means kind of way–or even as real dangers at all. Because who wouldn’t want to act more “normal” if they’re even remotely capable of it, right? 😐 The post may be triggering for people who have dealt with too much of this, but is well worth reading.

When we internalize the messages that tell us we are unreliable narrators of our own stories, that we are “bad” and “wrong” when we exist as ourselves, it creates violence inside of us. It’s not the physical kind of course- though sometimes people do hurt themselves as a result of this “inside” violence. But that makes it no less violence, no less an attack on our beings.

The more I reflect on my own behavior and the writings of others the more I feel as though a lot of our passing comes from this violence that has been pressed inside of us. Our passing is  an expression, in part, of the thousand little insidious things we were taught.  To remind ourselves that we are wrong, that we are “slow.” To remind ourselves that we don’t count as humans unless we take these “lessons” to heart.

With those lessons is one that gets pointed to as the “reason” for them, why it is so “needful” for us to find indistinguishable. Why the parent I will sit next to in a meeting next week will tell me that they just want their kid to have a shot at pretending to be normal. The outside world is violent towards us when we don’t accept these things, sometimes in more obvious ways…

These things are brought out time and again, these dangers of the world. And too often- particularly when it is our families rather than disabled people ourselves- the solution offered is to teach us to pass. To not behave or exist as we are. To make eye contact and don’t flap or rock in public or don’t jump at loud sounds.

The solutions offered to individuals too often aren’t to make it so police know what to expect from Autistics (as well as unknowing the stereotypes of race), to end bullying through truly inclusive practice, to teach people not to rape and sexually assault people.

We are told that in order to save ourselves from the violence out there we must do everything we can to look normal out there.

And when we do look normal out there, they pretend that no violence is being done to us. Too often, they forget the violence that they did or dismissed to make us this way. Too often, they will always dismiss that it left us with violence in our heads.

As time goes on I try to unlearn the violence that was taught to me. I try to uproot the strongholds that tell me how wrong and bad it is of me, how selfish, to want to be okay with myself. This process isn’t helped by living in a society that reaffirms that all the bad things are because I’m wrong, I’m deviant, I’m disabled and I dare to try not to hide from it.

I have been wanting to write more about (non)violence, and the importance of nonviolent communication, so also found this interesting from that perspective. Violence leads to and excuses more violence–and not all of it is what most people have been taught to think of when they encounter the word itself. Violent attitudes and the speech coming out of them are tangled up with thinking violent acts are OK under certain circumstances. This becomes a serious problem when these circumstances include when someone is having a xenophobic reaction to someone who is not doing or offering any harm. And this kind of pattern is also the result of setting up respect as zero-sum.

Another good older post from shiva at Biodiverse Resistance: Passing, stealth and disability identity. There are so many other insightful posts I have read on this general subject–mostly from the not-so-neuroprivileged and trans* folk–and I may do a roundup at some point. The list of things I want to write is threatening to catch up with the to-read list, right now. 😉

Also tying in here: a “tell us something we don’t know ” article I ran across the other day: People with milder forms of autism struggle as adults — SFARI. I’ll just paste in commentary from Tumblr again here. There are enough nesting blockquotes already that I will just put a divider after the end–and add inline clarification of who is commenting. I also pasted another relevant paragraph into the original quote, with a bit of bolding added.



Contrary to popular assumption, people diagnosed with so-called mild forms of autism don’t fare any better in life than those with severe forms of the disorder. That’s the conclusion of a new study that suggests that even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems

In fact, people diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS) are no more likely to marry or have a job than those with more disabling forms of autism, according to a Norwegian study published online in June in the Journal of Autism and Developmental Disorders1 

“The implication of our findings is that the consequences of having an autism spectrum disorder with profound difficulties in communication skills and social impairment can’t be compensated for by either high intellectual level or normal language function,” says lead investigator Anne Myhre, associate professor of mental health and addiction at the University of Oslo in Norway…

A 2009 European study reported that few individuals with PDD-NOS, autism or Asperger syndrome live independently3. That study found that antisocial personality disorder and substance abuse are more common in the PDD-NOS group, together with the mood and anxiety disorders shared by all the subgroups. Although all 122 people in the study have normal IQs, only 40 percent were employed at the time of the study, and 84 percent had never been in a long-term relationship.

(me) Funny how stigma/bigotry are not mentioned at all. They just need to figure out how to fix us earlier and better, before they have to throw in extra personality and other disorder labels to cover the PTSD, reactive depression, etc.

I went ahead and submitted a LARM membership form earlier. It didn’t take long before running across a reminder that this might have been a good plan. 😐

(nekobakaz: ) I’m looking at just the description of this and thinking “gee, we could have all TOLD you THAT!!!”

(me) Yeah, I know–big news, right? *shakes head* And what do you want to bet that piles of similar studies wouldn’t budge the opinions of the folks who get some perceived benefit out of these artificial divisions to begin with? 😐 Was initially thinking of the NLMC crowd, but they’re hardly the only ones.


So, some of us are not really very disabled, except when we are. And, indeed, even people who are more able to pass/get passed in certain ways we are told are important still run into lots of intolerance which is, erm, disabling in the extreme. 

OK, had to link to something on the social model twice there. Because it’s just that dehumanizing and headache-inducing. And one of the best examples I have seen lately of the difference between impairment and real disability–and the kind of attitudes that lead to the insects they seem to be describing having real social and communication problems with people who view them that way, all right. 😦 It’s hard to “compensate” with the kinds of perceived skills they mention if the other person has already painted you as someone “disordered” with “deficits” in particular areas which are not considered morally neutral at all.

See also The Misleading Nature of the Deficit Model, Theory of Mind — Whose?, and pretty much all the rest of Rachel Cohen-Rottenberg’s Autism and Empathy blog.

I thought the Europe-wide employment figures looked high, compared to what I had seen previously for the UK.  (Estimates vary wildly for the US, from what I could find and a couple of discussion threads on this.) Indeed, fairly recent NAS-connected survey ones I could find for the UK are worse (bolding added):

According to statistics released by the NAS, the employment rate for people with Asperger’s Syndrome is 12%. For people with Autism it is 2%. It is very hard to see how those statistics can be reduced in any way, shape or form, unless radical changes occur in the way the Benefits system operates in Britain. There also will be people with these conditions who are undiagnosed so obviously it is difficult to gauge a totally accurate figure, but I would say that an unemployment rate of 88% is accurate for people with AS and 98% is fairly accurat for people with Autism.

The high unemployment rate isn’t because people with AS/HFA are idle. No, this isn’t a black or white issue. How can or how does someone with Asperger’s Syndrome/ High-Functioning Autism manage to provide employment references if they have never worked or have had several jobs, which were only short term? Those with AS have social and interaction difficulties, so it will be hard for them to gain personal references, which don’t always show or tell a full story, like a Curriculum Vitae or resume doesn’t.

When job descriptions listing statements such as ‘Must be a good team player’/’Must fit in well with all sorts of people’/’Must have good communications skills’, many people with Asperger’s Syndrome are placed at a distinct disadvantage. For example, someone with Asperger’s Syndrome may be able to do the job they have applied for easily, but if they come across to employers or co-workers as ‘weird’, ‘asocial’, communicate in a very ‘strange manner’ or present a poor performance at job interviews, they will constantly remain unemployed, regardless of what abilities they could offer to the workplace.

I know I saw the report and figures in question on their site before, but couldn’t find the original reference now. (I did find a 15% full-time employment figure among people surveyed for their Don’t Write Me Off campaign; “one third are currently without a job or access to benefits”. *raises hand*) The commentary above is from someone with Asperger’s, not surprisingly, and repeats some common themes that ring true given my experience* as well. And yet it’s hard to shake the instilled guilt and shame over having trouble doing paid work, and just not always being able to jump some of the hurdles to succeed at the whole “independent living” thing in general, by common standards.

It is not too surprising, unfortunately, that one of the main subheadings on the NAS’s page about employment is Bullying in the workplace. And adults get blamed worse than children when this does happen, in various forms. Too often this is justified because people are perceived as acting weird.

BTW, I must also throw in that these employment figures serve to confirm my personal impressions that the acceptable range of behaviors (of various sorts) is comparatively narrow here, at least in Greater London where I have been living. I get a lot more strange looks and unpleasant interactions when I’m out than I was previously accustomed to, as well, so this kind of encourages not going out much and avoiding interacting with other people when I do to a much greater extent. (Other aspects of this will wait for when I eventually get that gender-related post done, but it sort of all ties together as far as I’m concerned, as the upcoming video only underlines IMO. Perceived gender variance is just more of who you really are being deemed threateningly unacceptable–and, for me, is also hard to separate out from much of anything else.)

Actually, while I am reminded, here is a video I ran across the other day and meant to throw in, which is very long but worth watching. It’s not so much about sex, per se, as about “invisible” autistic (assigned-as) women trying desperately to “pass”, gender, sexuality, rather softpedaled vulnerability to abuse particularly when young, and relationships. (Sorry, I cannot find a transcript and am not up to making one for this long a video, given my own auditory processing problems.)


Sex and relationships — women with Asperger syndrome

Sarah Hendrickx, Asperger Syndrome Consultant and Specialist Author, talked about the expectations from relationships, and issues surrounding sex and sexuality for women on the autism spectrum.

Other than the unfortunate (if not unexpected) emphasis on biological determinism rather than a social/cultural expectation mismatch–and the neuroprivileged insistence on casting differences as disorder–the descriptions here are ouchily close to my own experiences. Including the between-eyebrow crease. 😉 (And, unfortunately, having learned to spot predatory jerks the hard way–more based on not feeling like you deserve much in the way of respect and boundaries, and having been taught to distrust your instincts.) This speaker goes into the prevalence of autistic people not doing the expected thing with regards to gender and sexuality, with some of the same old hypotheses attached.

But, the main reason I include this does tie back in with other things here: the overwhelming pressure that can lead us–especially female assigned–to try to pass (in various ways) to avoid bad treatment, until we absolutely cannot do it anymore and just crack. When being an autistic person and being what society expects from a girl or woman are not very compatible–again, more on how culturally dependent this is in another post–people get hurt. She softpedals it and repeatedly speaks more in terms of “wanting to fit in”–but, yeah, any of us who have actually been there know why it is so important not to stand out in certain ways. And what very real risks we run by standing out, frequently regardless of how hard we try to pass for the kind of person usually deemed to deserve respect.

I am not saying that things are great for anyone not assigned female, but this is based on my lived experience–and it carries its own unique cluster of problems. Try to act “normal” so hard and for so long to avoid overt abuse that people claim you either cannot exist at all, or in the rare case that you do exist and are not just deemed “crazy”–that your brain must somehow be very, very “male” in some way that makes no sense outside a framework of neurononsense-based just-so stories. You get erased in one way or another, frequently more than one at the same time.

And, yeah, I burned out on even trying very hard to pass a long time ago. I can usually let myself tic and mutter at myself in public, and just get exasperated rather than embarrassed by the policing stares and comments. Sometimes I coldly stare back, wave a scolding finger, and/or make faces at people who let out rude comments when I’m still in earshot. (Once again, whose social skills are the problem?!) But, for all that, I still sometimes find myself caught up in policing my own disabled-looking behavior and needs. And we circle back around to the beginning of this post…

ETA (the next afternoon): The more I think about it, the more I am concerned that it did sound like I was trying to go for some kind of autistic Oppression Olympics–especially given all the weird emphasis on minutiae to divide us up by too many outsiders. That was really far from my intention.

In the wee hours, I ended up back at Julia’s Just Stimming, with a lot of posts involving passing and the consequences all around, and the violence–very intense and often triggering, but still just what I need to read. She’s very good at showing various kinds of bullshit for exactly what it is–and how it affects real people. I didn’t think to link to any of her work there, but it’s hard to choose just a couple of posts anyway. One I’d read before that tackles similar themes to this one, from some different and very powerful angles: Disabled, Not Different. Close to the heart of the matter:

See, here’s the thing. There is an acceptable margin of difference allowed a person, and an acceptable range of ways to be different within that margin, and anyone who pushes beyond that gets pushed into the Uncanny Valley. People in the Uncanny Valley are neither wholly human nor entirely nonhuman, which means we get the human treatment sometimes, and other times we get beat up until the uncanny parts of us are sufficiently chipped off.

When I tweeted a link to this before, someone actually tried to argue with me that I must not understand what the Uncanny Valley really means. Better not to engage? You betcha. More disturbingly, this was another disabled person, deciding how we autistics should describe our experiences. By pressing the “you must not understand what you’re talking about” button.

And I am impressed again that one of the ways in which I am still afraid to act unacceptably is not wrapping strong emotions in lots of insulating verbiage to provide some cushioning and distance. Somewhat stilted dancing around may come across as weird, but it’s less threatening and less likely to touch various nerves and get you jumped on. *sigh*

At any rate, one comment from Ben Stansfield on Dear “Autism Parents”**–which I had somehow missed up to that point–really caught my eye. A good, concise summary of similarities of experience between those of us who are disabled in certain ways (regardless of any other divisions laid on us)–and the deep differences between the reasonable expectations based on this experience and what most people with more privilege in this regard have learned to expect:

I’m intelligent, and sometimes outraged, and more often than not, in order to be socially acceptable, I must be less outraged, and less intelligent.
Most people in my life don’t or wouldn’t understand my fear of being on the street, being doped up in a hospital, or being abandoned by my few friends and family. I feel sometimes like I hang onto my social acceptance by a hair. Conversely, other times I feel like I’ve lost myself in the behaviours I ape by a lifetime of habit and adherence to ‘the rules’.

Truth. The details of how each of us got to this point may be a bit different, but as shiva put it in an excellent piece on Trans liberation and disability liberation: a necessary alliance, “Show me either a congenitally disabled person or a trans person who doesn’t have PTSD, and I’ll show you someone who must have been brought up in Utopia.” And then said PTSD gets framed as an additional disorder, I might add.

Indeed. Despite all the scarcity and zero-sumness that keeps getting pushed, funny how there’s always more than enough violence of astounding variety to go around…


* My own last round of job-hunting was just distressing, though I did eventually end up with a low-paid one stocking groceries, pretty much being bullied into seriously injuring myself doing two or three people’s physically strenuous jobs under serious time pressure. (Literally; most of the staff left to go to a new store location, and maybe half were replaced by the new manager. Two or three people were previously doing what I was hired on to do, as I found out pretty quickly.) In a smallish store, I was working with another underemployed person obviously somewhere on the spectrum, who had been there for years and was in a low-level supervisory position–but finally snapped and ended up quitting under the pressure. Neither one of us knew how to deal with it effectively, and this was taken advantage of. I was almost glad when I injured my back and had a good excuse just to quit.

I found it darkly amusing at the time that, even though I suspect I got hired to sling boxes rather than work the registers because I (a) looked strong, and (b) interviewed awkwardly to the point that I cried for hours afterward out of frustration and embarrassment, I ended up dealing with a lot of customers–and, as Obnoxious New Manager put it, “could sell sand to Arabs”. (Erm, yeah. Just a small sample of the bigoted tripe coming out of his mouth.) The regional manager made a big deal about how great I was dealing with customers on one swoop through. That would be by applying the automatic polite scripts for dealing with anyone that I learned growing up, and actually trying to help people find what they needed. I try not to sound insulting, but the expectations there really are that different, and I have to keep reminding myself of this when dealing with people on a day-to-day basis.

Being (even “acceptably”) foreign and not having any British-style educational qualifications–which are often specified as requirements–has not helped my own employability. But, I have gotten the impression that just not showing the kind of personality traits and body language currently considered to indicate a good potential employee–pretty much no matter the actual job description–has been a more considerable factor.

When/if my chronic pain and fatigue improve enough more that I’m physically more able to do paid work on any kind of regular schedule, chances there don’t look good other than for doing more of the same crappy low-paid sort of thing. (Or, indeed, try to get it together enough to run my own small business again. With book- and general recordkeeping help!) This is, under the circumstances, not so much pessimistic as realistic. And, indeed, that does not make a person less valuable. She reminds herself. *sigh*

** In which she articulates some of the major reasons that the way “person first” language too often gets used has given me the willies since the first time I ran across it. Even without the absurdity of calling what you’re doing “person first”, when you are not disabled yourself but feel free to dictate what other people are allowed to call themselves without somehow insulting and denigrating themselves and other disabled people. (What any given disabled person prefers to do is a different matter, of course.) “The dichotomy between being a person and having a disability is a false, and useless, one. It’s based in the notion that people with disabilities they can’t hide or that we can’t pretend to ignore aren’t people.” Just a taste there, just a taste.

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