The past month or so I’ve been over-exerting myself because I have some wonderful opportunities coming up. I applied for a writing fellowship and, this past week, prepared my presentation for the 2nd Annual Southeast Adult Autism Symposium. If you are in the southeastern portion of the U.S. around the 21st of this month I highly recommend registering.
The fellowship is about my negative experiences with various powerful institutions as a neurodiverse woman. The presentation is about my experiences with sexual assault and social manipulation (and how to avoid it). So it’s been pretty intense having to deeply examine and write about these adverse incidents again. All the statistics are grim and it’s very clear that the two groups of people that are the most disadvantaged in America (besides, of course, people of color and women) are the cognitively disabled and the imprisoned. I’ve met people who are all four of the above minorities, and they are royally fucked. They never even get a chance.
Well, I screwed up my life so much that there was no way I was ever going to build a typical career from the ground up. I have massive employment gaps, a criminal record for a very stigmatized crime, I take medications that show up as illicit drugs on pre-employment drug tests. Since I’m not an automaton or snitch, I don’t ever do well on those mysterious pre-employment personality surveys, I fail the math test every time, and, being an isolating person, I don’t have any personal or work references.
For many spectrum people, trying to fill out a simple job application is enough to trigger a meltdown. I don’t remember names, dates, phone numbers, or the order they came in. In addition I was heavily, incorrectly medicated for most of my adulthood. A lot of it is indistinct except for the bad stuff. I don’t have any idea what to write down. I panic.
Once I got a diagnosis, I realized I was still on my own and had to create my own opportunities. No help was coming. So I read books about leadership, compromise, communication, building movements, and lots of other relevant subjects. I basically voc-rehabed myself. I was privileged enough to have the time and space to do this by not having to work and being left alone to heal for several years. And it took that long.
The reason I speak and write about tough issues is that most people who’ve been as marginalized as me are never spit back out of the Leviathan. They don’t have the words or the resources that I do. Absolutely no one else who has been that low is visibly advocating for them – the forgotten spectrum men and women who are swallowed by failed institutions ranging from inadequate and misguided, to malicious and punitive.
I’m also playing the hand I was dealt.
My family is not happy that I don’t “just move on.” They don’t like people who “dwell on things” and “stir shit up.” What they don’t know is that “voice feeds on the lack of opportunity for exit.” I can’t take a traditional, and probably safer, route to accomplishing anything and thus exiting my circumstances. My past and my disability have trapped me. I have no clear exit. But I do have a voice. Voice is draining and has consequences, but it’s better than dying anonymous without ever having risked something for someone else.
I attended the meeting of a local organization of different faith communities who are deeply concerned about the fact that poor people sit in jail due to lack of money for even the lowest bail bond, which amounts to poor and mentally ill people sitting in jail before being convicted of a crime. There were a lot of good questions and comments by a lot of good people, despite this being such a complicated issue.
Facts and figures were discussed, including the price of keeping one person in jail in our county for one day – $87. This was mentioned in passing, but this dollar amount must have made an impression on one older, very professional looking white man in the corner. He piped up and asked probably the best question of the evening: [paraphrasing here, he had all the math worked out] So if it costs so much to keep people in jail, why are we still doing so even though it’s not economically smart and the taxpayer loses money?
A tepid silence fell over the room then, and since I abhor a vacuum, I softly muttered three words, “It’s an industry . . .” Several of the people doing most of the talking nodded and expressed grim agreement with me, but didn’t expound. The truth is that we didn’t have time to get into the particulars of bed quotas, the prison-industrial complex, political corruption on every level, and the apathy of those people not affected by criminal justice problems. I would personally recommend he delve into some Chomsky.
A disability activist I know went to a different meeting recently which aimed to start a dialogue about affordable, appropriate housing for the disabled, who are often homeless in my town. The mayor was there to answer questions and listen, but at the end he explained how his hands were tied as far as any housing solutions for us. The money and political will simply isn’t there.
I completely believe him about the lack of political will and concern for people like us, but there is plenty of money in our coffers. However, those funds are being diverted towards projects which directly target this population in a destructive way. I read the local paper and it is constantly crowing about new expenditures by the city, such as paving over and eliminating the one place downtown where the homeless and mentally ill can find shade from the southern heat and simply exist.
Or the new plan to spend tens of millions to expand the local CoreCivic (formerly CCA) prison facility capacity to “reduce overcrowding.” (Another way CoreCivic reduces overcrowding is by allowing people to die on their watch.) A tax hike was approved for this “public service” but no alternative or restorative solutions even make it up the ladder of power for consideration.
All the groups trying to change this stubbornly entrenched system of maltreatment and injustice towards the vulnerable have several big obstacles at the moment:
Republican control of pretty much everything right now – hence the lack of “political will” which just seems like garden-variety compassion to me
how to organize and who to involve – it’s been decades since the last round of sweeping civil rights reforms in America and we are rusty at this
lack of charismatic leadership in key communities – we (minorities and the disabled) are so beaten down and robbed of our power and credibility that it is difficult for community cohesion to happen
where to even begin – criminal justice problems are complicated and it’s difficult to find a chink in the armor of such a well-established system of institutions backed up by those with money, power, and many lawyers
But it doesn’t matter. These are times that define who we are and if we can’t find it within ourselves to correct atrocious treatment by our own leaders, locally and nationally, we don’t deserve our sense of American entitlement. We are no better than the multitude of countries we look down on for dystopian maltreatment of their citizens and those seeking asylum.
If you are concerned about these problems, roll up your sleeves, do some internet research, and call meetings in your communities. Don’t forget to cooperate with other helpful organizations in your area and share information. Show your local politicians that your city isn’t just about new businesses, nostalgia, and building projects for tourism and gentrification. Define your community by how “the least of these among you” are accommodated and saved from horrible circumstances.
I have an acquaintance who shares one of my biggest passions and we occasionally collaborate. We have been helpful to one another’s causes over the past year and have a productive back and forth. One problem: he calls me “dude” a lot. Even in texts.
This is me:
I know. I ooze masculinity.
But I still get “dude-ed” by people regularly and I have a few theories about why:
One: They misinterpret my manner in conversation as being flirtatious when I don’t mean it to be (or want it to be), so (if not interested) they misgender me to send the message that they don’t see me as a sexual option. This the likely situation with my collaborator.
I don’t have a lot of nuance in my social presentation. When I’m trying to be nice to a man OR woman I know it can come across as a little too friendly and flirty, and this has led to sitcom-like misunderstandings in the past. As I’ve said in other posts, have two modes: Golden Retriever who’s been cooped up all day and Daria. Not a lot in between those until I get comfortable with someone.
Two: I’m not gender binary in that I don’t have super-femme way of speaking or moving or what I think of as an “affected” vocal style. When people hear me speak I don’t sound like a girly-girl or even a grown woman. No vocal fry or genteelness in me. My voice is gender neutral, but when people with binary expectations hear me they read it as masculine. The speech patterns of women in our culture (and others) is not inborn – it is a learned affectation.
For instance, my sister speaks to me in her “real” voice which is pitched lower like mine is, but when she is in certain social situations she, perhaps unconsciously, pitches her voice higher and starts to sound a bit like a Valley Girl. (Love u, sis.) This is a concession to conformity I am neither willing or able to make. Another example is the way Japanese women are expected to pitch their voices very high or they face social censure.
But it doesn’t mean I’m gay and it definitely doesn’t mean I’m a dude or that I specifically identify as one. I’m a middle-aged cis-gendered heterosexual female. And a pretty one.
I’m happy with myself. However, I know many women and men on and off the spectrum who are much more non-binary in presentation than I am. I mean, just look at Temple Grandin. She’s never spoken about her sexuality or gender identity and that’s a shame because being non-binary is very common among autistic people. I can’t speak for everyone similar to me, but I think it has to do with not “seeing” OR respecting the arbitrary gender expectations that people with better social intelligence are ridiculously obsessed with. We find it unfairly constrictive and difficult to keep up a false self at all times.
We are purely ourselves and that should be respected.
[Additionally, there is a distinct overlap between trans people and ASD – being one makes you more likely to be the other. More research needs to be done to determine why – but who really cares why? Just stop being shitty to them, because they shouldn’t have to exhaust themselves to make normals comfortable anyway. They have the highest suicide rate of any group of people.]
The last reason people call me “dude” is the saddest and probably the most likely: Women and girls (the white ones anyway) don’t allow me into their circles for very long. I have a lot of problems with NT women in particular. Therefore, unlike most little girls and teens, I never learned the “proper” gender mannerisms and speech patterns and social skills of women because I was never around them. I couldn’t model my behavior on theirs. Instead, like many women with Asperger’s, I spent all my time hanging out with dudes. (This presents its own set of issues).
In my late teens/early twenties I started hanging out with hippy motherfuckers and they pretty much call everyone dude – sometimes in the middle of sex I’m sorry to report. I mirrored their speech patterns and mannerisms so I have a dude-like way of speaking at times and this throws people off.
I hope in the future our culture can be less condescending to those who eschew some of humanity’s sillier requirements for acceptance.
Aut of Spoons is a lady after my own heart. Here she explains EXACTLY what it’s like trying to pass and function as a “high functioning” autistic person. We can “pass” for normal just long enough to convince every institution designed to help people like us that we don’t actually need help. There is no temporary respite for people with variable functioning levels in America. Please enjoy!
I’m hitting the edge of some burnout right now, which is not really news in and of itself (there’s a lot of shit going down in my life), but what’s different this time around is that I’m very actively involved in an advocacy program and I’m seeing a. the types of services and programs that people who are less functional than I am receive and b. how hard it is to access services. Mixed in is the realization that most people don’t think of me as disabled. When I act disabled they get confused, frustrated, and angry. If you’re disabled, you’re generally expected to be exactly the same amount of disabled all the time. But that’s not how it works.
I can generally pass for neurotypical. I can be independent. Until I can’t.
There are two ways that this comes back to bite me in the ass: one is in…
For a while I’ve wanted to discuss one of the most frustrating aspects of having a different social presentation: gestural aggression. What’s that? It’s something just about everyone engages in on a daily basis. I’m not talking about obscene or threatening gestures. I mean the ones that we drop into conversation to let the other person know that they are mildly perturbing or that they are crossing an invisible boundary. It includes all sorts of “shade” – huffs, sighs, arm crossing, and, of course, the eye roll. These actions can often accompany snarky, muttered, or condescending remarks.
Although this sort of passive-aggressive body language is the expert territory of teenage girls, I see people of all demographics and cultures using this suite of gestures. This is not so much a form of instinctive communication as it is a form of learned social and conversational policing by those who are more able to conform to the unspoken expectations of the interaction.
For instance, I tend to get eye rolls when I get “overly” enthused during an interesting conversation. Interesting conversations are few and far between for me at times, so when I find myself speaking to someone about a favorite topic I can get “carried away” and go on excitedly after the other person is ready to speak again or change the subject. This is par for the course when dealing with an Aspie and we all do this regularly, but there are consequences that others might not be aware of.
When people roll their eyes at me it hurts, and though I don’t read body language as instinctively as others, no eye roll ever escapes me. I can fucking hear them. I just have no earthly idea how to respond in real time to something that feels so hostile to me when I am sincerely trying to be as agreeable as I can.
An eye roll says, “You are weird and inappropriate and are now on thin conversational ice.” It says, “I don’t have enough respect for you to be patient with you. You are not worth listening to.” Once more I am quietly “told” that I’ve somehow screwed up my talking again and another person is growing tired of me.
While one eye roll or exasperated sigh isn’t enough to derail my mood, the silent censure adds up and I get the overall impression that regular people don’t want to interact with me as much as I want to be included. Gestural aggression sends a harsh message over time that you are not welcome or tolerable. It makes you more nervous and less confident when you try to talk to people later on.
Don’t get me wrong: I know better than most that conversing with a socially impaired person can be laborious and frustrating. I try to make it easy on other people I’m around by putting forth a monumental effort to not draw any eye rolls or bore anyone. I consciously, meticulously try to match the tone, topic, and appropriateness level the other persons sets. I make an effort to let the other person have their say without compulsively interrupting.
But it’s exhausting, and I don’t always succeed. Paradoxically, I can police my own social presentation better when I’m less familiar with someone, but as I grow more comfortable my more exasperating conversational differences start creeping in because I feel safe being myself with that person. In the past, those people to whom I let slip my awkwardness may become confused and annoyed and pull away. Let the self-flagellation begin!
I want the socially traditional among us to understand that most weirdos are doing our damndest and attempting to offer something of our carefully guarded, loner selves to other people. I long for positive interactions and better communication skills, but when people express conversational disdain and censure, it derails those attempts to not be an isolated, squirrelly freak. And it’s not my fault.
I’ve watched so many otherwise kind people rudely shut down the conversational efforts of those autistic or simply awkward people they have decided not to extend social tolerance to. This is an insidious form of ableism. People mostly think of ableism as being insensitive to those with physical disabilities, but people with invisible disabilities – like social and communication disorders – are still boldly discriminated against by even those who love them using social judgement and unconscious exclusion.
What I’ve discovered in my own long history of talking with other awkward people is that it’s entirely worth the extra patience and occasional misunderstanding to get to know the fascinating and insightful people trapped behind uncool exteriors. Please try to meet us part-way because enjoyable, meaningful communication always depends on the efforts of everyone involved.
We are now accustomed to seeing people of color suffering at the hands of ill-applied policing techniques on the nightly news. A lot of us are still trying to process incidents like these and others are actively defensive on behalf of the blue lives in our communities. However, we seem unable to see police mistakes and misconduct through any lens other than race in America at the moment, and that’s leaving out entire vulnerable populations who might not be people of color or people of color who are targeted for reasons other than (and including) race.
[PLEASE NOTE: I am NOT saying that we should stop looking at policing through the lens of race, but we do need to add other at-risk types of people to the conversation who keep suffering at the hands of law enforcement and the criminal justice system. I am also NOT anti-cop or unaware of the horrific shit police deal with on a grueling daily basis. I believe poor training and funding are to blame, as well as a criminal lack of mental health and disability services.]
For instance, being black in America instantly, visually places you in a marginalized underclass regardless of actual economic status or intent, but there are other ways to enter a targeted group other than having a different skin color. Being disabled or mentally affected in any way also puts a person at a greater risk of being victimized by a series of interconnected and deeply broken institutions. The other main groups affected by police misconduct are school children and very poor or indigent people of any color. God help you if you are some combination of the above.
While I have discussed the prevalence of police misconduct involving disabled people before, I’ve never talked about what the consequence frequently is when it’s not death: jail. Not being taken to a mental hospital or even a regular hospital. Not being connected with helpful services or a concerned case worker. Jail. The place where our society sends the people it doesn’t want to see anymore.
Sometimes I think there’s just two types of people in the world – those who’ve been held captive by a hostile force and those who haven’t. Either jail is something that makes your favorite shows more interesting to watch or it’s something that changes the course of your life forever. And makes all those shows look dumb as hell afterwards.
I’ve been to jail a few times. OK, more than a few. I’m not going to go back over why I ended up there, so let me tell you what there is like. People with autism have traits that cause serious problems in a captive situation:
The need to be in control of what is happening to us and our environment
Difficulty understanding and immediately responding to questions or commands
The need for medications to be administered in a timely manner
Not understanding unspoken rules
Jail is a sensory nightmare even for completely normal people who can mentally block some sensory input and regulate their emotional response to it. To me it was bright, loud, hard, and so very cold. All the time. Day and night it was buzzing artificial lights, slamming metal doors, clanking chains, people screaming and vomiting and weeping and laughing, COs shouting stuff I might need to hear. The smells and tastes ranged from pitiful to foul. The lights were never off and everyone had to put tube socks (called eye-socks) over their eyes to block out the light to sleep. I didn’t sleep.
This input alone caused my blood pressure to go into dangerous territory during all my stays. It was never treated although they were aware of it and concerned.
In jail you (and your concerned family) are never told what’s going on, what’s about to happen, where you will be taken, or who can be of help. The jails are not running a customer service model, in other words. Your concerns about what’s happening to you are purposely ignored, even exacerbated. This utter confusion and lack of control is horrible for anyone to endure (in fact, used by the Nazis as torture), but imagine you are someone who depends on a strict schedule and/or familiar surroundings to keep from having a serious meltdown.
Trust me, don’t ever have an autistic meltdown in jail.
In jails around the country, any person exhibiting recalcitrant, repetitive, or any unusual or simply annoying behavior can be put in four or five- point restraint chairs and tased to within an inch of their lives. I still have my scars. I was in no way a danger to myself or others at the time, I simply, very politely asked for some time to calm down before they started sticking needles in me. They didn’t grant me that wish. I’d already told them I was having a “mental health crisis” which was the best way to describe it at the time.
In law enforcement lingo, this is called a “pain compliance technique.” Nice.
Strapping someone down for any reason and tasing them is still apparently legal even though the UN Council on Human Rights and Amnesty International have roundly condemned this practice in the USA.
Y’know. Because it’s torture. That’s right, America. We don’t just torture in Guantanamo Bay and other “black sites”; it happens in every city and county in America right in the middle of your community to the most vulnerable people you can imagine – the mentally ill and disabled. Because we can rarely fight back literally or legally. (No one believes what we tell them, if we can tell them, anyway.) So they get away with stuff like this and a million other malicious slights and dangerous inefficiencies.
Like denying vital medications even when breathless family members rush them to the jail with instructions about administering them in a timely fashion. This also happened to me with an anti-convulsant and several psych meds that one should absolutely not be suddenly taken off of. Or in many cases humiliating the physically disabled by not providing the most basic medical supplies they need.
The point of jail is not to keep you away from society to keep society safe: it’s to insert you into an economic system that profits from you being there, as long as you are someone who lacks credibility and agency. As long as you are a warm body that can be kept barely alive (if not entirely sane), you are treated like a product to be processed as efficiently as possible by understandably depressed and scandalously under-paid, under-trained staff.
Right now in my town which I love so much, a young autistic man is being held in jail after an altercation (domestic assault) with his aunt who couldn’t calm him down. This young man is underserved and now sitting in an environment that will traumatize him for years to come, without his family, surrounded by a bunch of tough customers who will not know how to deal with his differences. (Did I mention that jail is also a socially brutal place?) He is being denied needed medications and the jail is keeping his mother in the dark about his condition.
I’m very concerned that the above story will be the last we hear about this boy. When, O when, will we stop and take a look at the larger, more frightening portrait of American criminal justice and realize that absolutely anyone who is powerless or misunderstood is unsafe? Jailing is an industry and, as such, needs to both grow and find new sources of “raw material.” When you are sick or disabled, and therefore can’t either produce or consume enough for the economy, you become the commodity itself.
I had a bad April, folks, and I’m glad it’s about over.
The last day of March I was really feeling my oats and had a wonderful, productive day. It was one of those days that make me glad I’m still around. But in my experience, no good day goes unpunished.
Easter fell on the first and therefore was also April Fool’s Day. It was also the day my grandmother began to actively die. My mom called me up in a panic and said we needed to get her to the emergency room from the assisted living home she had recently moved into. For some reason the home couldn’t authorize it and there was some confusion. For someone with acute emotions, I can usually rise to emergency situations by shutting down somewhat and saying to myself, “Well. I guess this is happening. Ride it out like everything else.”
I got her to call an ambulance (I wasn’t going to transport both of them) and drove us to the hospital, as her car was totaled the week before in an accident she was lucky to survive. When my grandmother arrived, they let her lay around without being seen even though the place was deserted because no one gives a shit about really old, sick people in America. She was in horrific pain from an infected spleen (a complication of leukemia) and they took their damn time in making her comfortable. It was clear to me that she didn’t have long at all. My mother and I decided to not proceed with any drastic life-saving measures.
The next day I worked as they moved her into hospice care. After work, I logged onto Facebook (they’ve had a bad month too) and saw that my penpal and writing partner had died in the middle of my wonderful Saturday from an apparent heart attack. I’d been in a tif at him over a recent piece he’d sent me to critique. Long story short, he was going to publish something beneath him that didn’t paint him in a good light. He cared only about the truth and didn’t consider how it would affect his public image. I tried to be gentle, but he took it hard. So did I. His last post on Facebook was uncharacteristically gloomy and hopeless, but I never got around to reaching out to him because I was being petty, as it now seems. His heart gave out, but I’m certain his mental state was a factor.
Sometimes the Universe taps you on the shoulder and whispers in your ear, “You’re still an asshole.”
Later that evening, my mother texted me to say that my grandmother had passed away.
I guess I’ll point out here that April is also Autism Awareness Month and both my penpal and my grandmother were on the spectrum. I want to write something profound about the similarities and differences of their deaths, but death is just messed up and sad no matter what your brain is like. My grandmother had been depressed, lonely, and far more ill than we had suspected. She was terrified of being alone, but too socially anxious to go to a facility where she would have to meet new people. It was hell for her and it had gotten to the point where I was too emotionally overwhelmed by the anxiety she projected onto me to look after her anymore.
My penpal was going through a divorce and striking out on his own again. We met at the Inaugural Southeast Adult Autism Symposium last year. We hit it off instantly and I was attracted to him. Although he was older than me by about twenty years, we were intellectually simpatico and his energy felt good. We started corresponding (he’s in Atlanta) and I really wished he was with me on my phantasmagoric New York trip. He used to live there. He was working again, as was I, and I was looking forward to hanging out at a conference later in April as we’d planned. He swore to me the last time I saw him that the next time we met we’d both have jobs. I was doubtful, but damn if he wasn’t right.
I skipped out on the conference.
I suppose the difference between them is that one lived long enough to suffer and one suffered enough to die. God save us from dying too young or dying too old. From dying too swiftly or dying too slowly.
I had a bad meltdown the next evening after it all sunk in. I got into some old brown liquor I found in the back of my freezer. I hate brown liquor (it was for a recipe really), but I was beyond caring. I went into a walking, raging black out. I’m sure I left some messages on my penpal’s voicemail that are pretty epic. Somehow I ended up locking myself out of my house buck naked, but somehow still (presumably) holding my cellphone, because I woke up in my parent’s spare bedroom sans the bed. (They don’t have a key to my place, so I ended up there). I was in some random clothes that didn’t fit, lying on a pile of broken picture frames and dust bunnies. I had to pick some staples out of my arm.
I was the sickest from a hangover I’ve ever been for the next two days. I didn’t make it to my grandmother’s funeral. I had a few abrasions and the power on my block went out for some reason, but I’ve had much worse meltdowns, just not in a while. Only in the last week have I felt a bit better.
It’s been a slog.
Other shit happened this month, but I will only mention one more thing because it’s the least boring and most believable. A semi-famous Scottish author I hooked up with in my youth wrote a memoir about his time living in America and I’m init. It’s not flattering (or accurate), but he was a #MeToo creep and I was going through the most messed up stage of my life. I guess the lesson is don’t have “empty sex” with a globe-trotting douchebag and then poke around on his author page years later.