Microcosmic Multitudes
May 1 is blogging against disableism* day. I had something planned for a while, but I’ve been staring at my computer, unable to bring myself to put together the bits that I wanted to. And that is okay, it really is, because some days that is just how my brain goes.
So instead I’m writing some minis into one post.
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1.
I saw a tweet today with one of those titles that enrages me with how misleading it was. It was talking about people who use disability services at the airport under false pretenses. Only, it took until nearly the end of the article for them to specify they meant people who are capable of standing in line but use the complementary chair JUST to get through security. So much of it contained assumptions and sterotypes about what people who use chairs in airports are like or doing. So much of it builds hostility.
I live with a couple of conditions (beyond, obviously, my developmental and MH stuff) that cause chronic pain and variable mobility. Some days, I can move about fine. Some days, I can’t get out of bed for hours. And somedays- more often when I travel- I need my cane for all or part of the day. My activities impact my mobility sometimes, too. If I abuse the advantages of a “good” mobility day, I’m more likely to have a “bad” mobility day the next. If I walk too long a distance (and it’s not always a reliable measurement) for my body that day, there are consequences. Standing for certain periods of time, again variable, have consequences. Sitting for long periods of time also have consequences. And those consequences aren’t always next day consequences. Some are immediate.
My last trip flying was the first one that I took care of myself by asking for help up front. This is after years of having a progressively more difficult time- of having my joints become so inflamed by standing too long or walking too far that I’ve fallen over in strange airports out of pain; of creeping slowly along, last person to make it to the baggage carousel because if I was going to make it that far I would need to stop a couple of times to sit and massage my joints; Of falling down escalators because even though I knew I was disoriented and thought I might have a cataplexy issue (or joint fail issue if we are keeping in the body impacting mobility theme- I’ve fallen from both) I either couldn’t find the elevator on my own or it was labeled in a way that made it unfriendly to use unless you were accompanied or with children. I spent years needing more and more help, but not getting it.
Why? Well, because people are jerks about people needing only part time assistance. Because people assume that if you can stand long enough for the back scatter machine (which tends to be less of a hassle for a number of reasons than the metal detector for me) or to put your stuff on the belt that you dont’ “really” need it. Or if you can make it down the jet bridge- which often isn’t super long, often has railings, and has seating on either end- on foot that you are cheating by using assistance the rest of your trip. This last trip, I even got negative responses from one of the helper people at Hartford airport- they saw a fat chick who is young and can, with a cane, hobble up and down the jet bridge, and treated me differently than the visually fragile elderly woman who was also being assisted. And heaven forbid I not seem miserable.
Articles that don’t come out and say, “people legitimately need these things, and you can’t guess it based on looking at them” when they talk about this sort of thing? Make it harder for people who do need it to ask, especially if they don’t meet the stereotype- or meet the wrong ones.
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2.
April, the month that just ended, was Autism acceptance month. I had intended to write for 5 or 6 places. Instead I got out a quick post here, an urgent post as well, and one for ASAN’s Autism Acceptance Month website. I couldn’t pull my brain together enough to submit to TPGA‘s run of guest posts. I couldn’t get something written for here and for Paula’s Autism Acceptance Month blog around. There were several flash blogs that happened, and I was unable to get the words in the right order for any of them. Yesterday there was one for Autism Positivity, and I was only able to push out a poem that I still haven’t decided if I’ll make public or not. I’ll know by tomorrow.
When you are Autistic, April really can be the cruelest month. There is a muddling of stereotypes designed to describe us not as we are, but as forces in the lives of others. For all the efforts we put into those things that can bring our community together, there is a relentless noise in opposition.
For me, April was as confusing and barren feeling as a modernist landscape, a wasteland. The metaphorical shell I built in defense became an echo chamber of self doubt, the well of inspiration barren in the ensuing drought. I tried to spit it all out into words the only way I can when prose becomes a foreign language, through poetry where stating images and not needing to make sense to another person can be powerful. But in the places that I wanted to share, I had little to go around.
As the month drew to a close, internalized oppression reiterated words I heard as a child: “You will never do, will never be, will never become.” But I think they are always echoing there, waiting until I must close down taking in out of desperate self preservation, avoidance of rage. Some things said echo on our souls.
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3.
There are horrible, scary things in our world. Today a link was passed around, about a child, aged 6, with disabilities who had been shut in a cage and left to urinate and defecate on himself. What his parents did is horrible, and inexcusable and sadly not a new story. I looked at the photo of the (now empty) cage and was reminded eerily of Utica cribs and other things people tried/try to justify with the burden of the caregiver. And it happens over and over…
One part of my family are Grahams, and the motto is “n’oubliez-” Do not forget.
But in sharing it, I had someone make a comment that the parents must be intellectually disabled and should have had the kids taken away a long time ago. But this is not justifiable, not to me, not any more than any other things. Additionally, the parents were never identified as having any sort of disability, so the comment was made purely on the basis of bias. The horribleness, the evilness that we see when someone treats someone in their care the way that these parents treated their child? That has NOTHING to do with any disability- including Intellectual and Mental Health ones- that the perpetrator might have. Even were there complications, it would not be the reason, and assuming that they are disabled in some way is not ok. (Especially when in the same thread you wax poetic about how the child is especially defenseless because of their disability.)
As a friend might say, you can’t fight ableism with ableism.
I deleted the comment, and for a brief moment was glad that it was on my wall, where it was in my power to do so. But as soon as I had done so, I remembered. That stuff is still out there- and in places where my delete button has no power.
N’oubliez.
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*Disableism- in the UK, certain terms aren’t constructed the same way as in the US. What USAians call “ableism” is therefore called “disableism” for some UK people. (This is similar to how in the UK you protest for something, whereas in the US the word protest is commonly used to mean protest against something.)
I Do Believe This Is…
Content: Mentions of violence against people on the basis of ability, race, and so on; Mention of abuse.
Friday, March 1, is the 2013 Day of mourning for those PwD whose lives were lost to the hands of their caregivers. Last year, it was at the end of March, not the beginning, which means it’s not quite the anniversary of knowing one of my abusers/caregivers is dead. Last year, those two things fell on the same day. I felt shock and relief mixed into my grief. The shock predominated throughout most of that afternoon.
It’s been a year and a month since Stephon Watts was killed, by police who his family was told to contact for “help,” for the combination of being an Autistic young black male. 11 months since Daniel Corby’s murder. This fall it will have been 20 years since Tracy Latimer’s murder. A month and a half since Robert Saylor’s murder. Almost 80 years since the Nazi’s T4 program. I can post lists and timescales forever, it seems, and it still won’t have all the names it should.
Our dead are mixed in with the dead of others in places where our identities cross, these cross sections boosting statistical probabilities. Stephon’s murder was just as much (if not more so) a factor of racism as disability. T4 blended in to a larger propagandistic and genocidal engine.
There are sadly always many for which to mourn.
This year, we’ve seen violent events, events which have gotten the attention of major news outlets and the dwellings on of news cycles. In these ways, it is unlike our dead- though our dead are hidden in theirs. Instead of joining in mourning, the public uses these deaths as a means to fuel the same bigotries which lay behind the excusing of our deaths and pardoning of our murderers.
Recently, some noticed something terrible, something demonstrating the way in which a certain segment of the disabled population is viewed, when they googled “Autistics should” and “Autistics are.” Google uses everyone’s searches to guess what your next words will be. Based on the searches in their database, google suggested things like “Die” and “dangerous” to complete the search.
A flashblog (see both “should” and “are“) appears to be bearing some results* in amending the computer side of this, but Google only has the ability to amend what their searches suggest. They can’t amend a code and instantly remove the biases that lead to those searches in the first place. (Though it does help.) Erasing bias a is longer, and more complicated, process than that. A process which is on all of us to work on.
A process that we all need to keep in mind. Bigotry that cannot be forgotten, as it blooms fresh again.
My words here are not as direct as I’d like. I see that my sentences are convoluted, but every time I fixate on them enough to begin translating them out from the word pictures in my head into plain language I feel those things that indicate I’m about to cry. It’s hard not to, when you allow yourself to really have the reality sink in. Terror, relief, grief, anger, sadness, and the sense of ever reaching, all inter-playing and weaving.
Yes, I do believe I’m mourning.
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This year’s vigils are being jointly backed by ASAN, Not Dead Yet, and the National Council on Independent Living. You can find the nearest vigil to you on the ASAN website, and I’m (as an ASAN person) managing the virtual vigil 3:30pm EST-Midnight-ish, with a good friend, That Crazy Crippled Chick, as my second.** This is a cross disability effort; Autistics are not the only PwD to be murdered by those who were supposed to protect us.
* The article in the link is titled in a way that suggests that this change is already in effect. This is inaccurate; as of this writing, Google has agreed to modify their algorithms to eliminate this issue. It has not been implemented in a way that impacts the user end experience as of yet.
** Or number one, if I’m Picard and she’s my Riker.
Messy
I don’t think it is a uniquely Autistic trait to desire things be cut and dry, for the lines and sides to be clearly defined, for things to be clearly explained. Perhaps the intensity with which we cling to it can be, and thus the frustration and bewilderment some of us have when it turns out not to be the case being so heightened. I disagree with calling it black and white thinking, because I think that negates the fact that complex mechanisms can be clearly defined if you know well enough what you are talking about.
I think instead it is one of the human things to various degrees. Obviously, not all humans feel this pull the same amount. But it is safe. While there are some people who engage in risk-seeking behavior, for many that I’ve communicated with deliberate risk seeking is about facing or even fighting off the fear that safety makes feel inevitable. When you retreat entirely into safety, everything outside of it can become frightening, unpredictable, a risk. Sometimes I do have to ask, though, if it’s truly risk-seeking, or if it is a form of fear-avoidance.
I went through a phase the year I graduated High School where I wanted to be something I wasn’t. While others might not gauge the risks I took to be the same as “risk-seeking”, it was the same mental process. But it was on the scale of who I am and how small a safety zone I have inside me. It was terrifying and running on adrenaline and “proving” that it was something I could do. It was mildly self destructive, and I had my first major agoraphobic episode the following year. I spent 6 months only able to leave the lot the little house I lived in with direct supervision, to places I knew were both known and safe– my mother’s and doctor offices. And my mother’s was once a month and only because my then Roommate/boy friend had to return to our home town for National Guard drills.
Our stories and feelings are all messy, complex. And as much as I believe complex things can be explained, broken down into the tiny moving parts like clockwork bits, there are things which defy it. I want desperately to believe in a unifying theory, much like Einstein to whom the quote “If you can’t explain it simply, you don’t understand it well enough.” is commonly attributed. But some things aren’t predictable, are running on quantum mechanics, are inherently uncertain. Sometimes there are factors other than not understanding something (communication disorders included!) that make the totality of our circumstances and world more than what some people can explain simply. Perhaps another person could, but when it comes to the experiences rather than the facts? Things are incredibly messy, and the end of our narratives uncertain.
Einstein tried to find the Unified Field Theory until his death, becoming more and more isolated from contemporary physics work. It remains one of the unsolved physics problems. There is a lot of hope to someday reach that, and one of the reasons why people seem so excited about the Higgs-Boson particle is that if it is more than to be expected perhaps someday it could lead there. I have hope that someday I’ll have the words to tell my own stories in simple terms, and that each attempt will lead to more than to be expected.
I have a post in my drafts about Physical Therapy, about body awareness, and about changing over time and what that has meant. I couldn’t continue writing it, though, because it became messy. I started out going straight forward about the things that I’ve perceived differently but generally beneficially about my body in space. But then I was hit with a flare in my joint pain– and the only different thing that had been added was that I had started a Tai Chi class modified for people with issues similar to mine. I had done this to work further on body awareness and my sense of self and movement in space. I ended up spending the next day in bed, and the next several days in a lot of pain.
It is an inherently messy thing, this shift in both knowledge and perception. It came from something that seemed to have a lesser risk than other things I’ve done, and it was unknowable until it happened. Indeed, until afterwards when my body had settled down from the endorphins enough to be aware of the consequences. It’s a reminder of the uncertainty of everything, that we cannot predict everything, as much as even Einstein wanted us to.
When I wanted to be someone else, and even before that, my feelings around disability were messy and striving. While I embraced that I am “crazy”, a person with significant mental health issues, I avoided desperately the other parts of my being that were disabled. I clung to intellect, avoided and denied many of the conversations about my possibly having a developmental disability, swore that I no longer struggled with the same issues that delayed my ability to read by years, avoided the discussion of my experiences of selective mutism. I tried desperately to be “just” crazy, just a manic pixie girl (I never fit the dream part), to suit a limited sphere of what I thought was safe to be.
There are things that I said and sometimes even believed then that I hate myself for today. Eugenics, something I am now fiercely, passionately against seemed somehow a differentiation then, something to prove I wasn’t a “them” with. I used the R word profusely, partially out of habit and partially to distance myself from the times I had been called that as a child. I clung to academic achievements not only because it was something in an environment that I could achieve in, but that I hoped it would contradict the times I had been told my worthlessness. Towards the end of that period of my life I started to see the things I had talent in as simply talents, but before that it was the way to prove myself, to tell people I was not what they wanted to predict of me.
My past is hideously messy. The things I did well, the skills I learned, are overshadowed in my mind by this– how much I didn’t want to be me, and how much I was guided by a desire to deny half the things that form my experiences. It’s horrible, and messy, and confronting that is hard. I know that much of it was ableism, internalized and let to fester, but I still hate that that is a part of my past. That I could have been that person, and to be the person I am now. To desire the ambition and impetuous while despising the things that surrounded and directed it.
It is messy, and it is uncomfortable. It is also true.
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I am a layperson when it comes to physics. I’m sure I’ve over simplified or mis-connected some physics bits. But they are the simplifications and mis-connections that best analogize the emotions I have right now about this topic. If you want actual physics awesomeness, I do rec that you check out Minute Physics on Youtube. (Note: I don’t think they are captioned, though I do believe that their production team would be open to use captions that people produce, as time and budget are the big barriers.)
Shreds
I am not really sure how to start this post, in part because I feel like saying anything would be a risk. A risk to my on going well being, a risk to my security in housing, in healthcare, in access to the basics. But I think that that fear is just a symptom of what I’m talking about.
Last March, my placement on SSI was approved by a judge. I think my lawyer was a good one, even though he was the sort of man who terrifies me because his demeanor triggers some unpleasant memories. The judge didn’t even ask me to come into the courtroom- he decided based on my paperwork to offer me a deal which included me having a payee, which is actually something that is preferable to me because of the sort of things I have difficulties with. The waiting room was tense, and there was plenty of papers to sign, but in the end it turned out alright. My mother and I went to the sushi place across from the courthouse there in Wexford, and I had avacado and cucumber sushi.
The problem lies in what it took to get to that point. You see, the entire process involved looking at everything I can do, and find the limits, the deficits, and the flaws. Highlighting the things that I can’t do, and expounding rather than ignoring or accommodating for how they touch every single aspect of my life. There is nothing that was allowed to be “good”- not even something relatively meaningless like my IQ, which the lawyer was displeased with.
My lawyer was very thorough with his prep. Really, that is part of why he’s a great lawyer for this sort of law. He knows what they are looking for, and he is forthright. It’s a difficult process, even with the assistance in figuring out the paperwork and who to talk to to get the evidence that is asked for and so on. It is hard work, draining and demoralizing, even with the support I had.
Part of the prep work involves the lawyer working with you to help you communicate how thoroughly your disability impacts your life. I had been brought up by a mother who tried to emphasize strengths based approaches, ones that could limit some of the trauma that society can cause when your brain or body doesn’t work within the range that the average person does. This process was the opposite. My strengths were to be minimized, the limits that my disabilities put on them emphasized. Uplifting language was considered not appropriate, as it was said to disguise the impact that my struggles have.
That I believe in and on my good days fight for disability rights was even considered a hindrance My lawyer told me he hates activist/advocate clients, and only because we have harder cases to make. The language and work that keeps us from despair, that gives us some hope that some day life will not be as much of an up hill battle, that says that we should and someday will be seen as equal- all of this was something that is looked down on and despised. The fact that we want to and can envision the sort of world where the supports and environments we need to not have to go through the SSI/SSDI process in order to survive is too uplifting, too insightful for us to need and “deserve” anything in the right now. The fact that it is just a hope that is still being worked toward, that that world where those supports exist isn’t here fully yet, is irrelevant when it is something we believe in.
The preparation process also involved undermining a lot of the work I had done to allow myself to get by in my day to day life with a limited number of meltdowns and panic attacks. I still deal daily with memories of the things that were said to me by my step father and some of the providers when I was young. I have many little things that will trigger the memories, that will make me slip into the words that were said. Before going through this process, I had a few things that I would repeat to myself to counter them- it didn’t make them go away, but it made it so that I was left with shorter periods of distress, or delayed reactions. But part of the process was to emphasize the counter arguments- that is, to repeat in a not as cruel way the things that caused me trauma in the first place about myself. To emphasize incompetence the futility of the things I have achieved and the impossibility of success at the things that I wanted. To demonstrate less than.
I find myself, now, more incapacitated by these things than I have in years.
Throughout, I’ve clung to my advocacy and activism around disability. I’ve felt like a hypocrite, or like I was-had to be- doing it for someone else, because what was being re-taught to me was so against it all. But I’ve also felt like I was surviving, that this work was like some sort of safety line. I don’t know how well or if I would have survived it without.
Perhaps the level of struggle I’m having has to do with the nature of some of my disabilities. That perhaps the anxiety disorder processes and the tendency toward fixation from being autistic are what they call a perfect storm, moving towards a cataclysmic failure when they interact with a system that encourages devaluing. The part of me that thinks this reflects about the way that some of my friends don’t seem as traumatized as I feel from their time going through this. I know that in some cases this isn’t true- it’s just not something they want to or can discuss. I know trauma is like that, from both personal experience and from the writings of others. And yes, perhaps some really weren’t traumatized by the process, left struggling inside more while their supports and safety outside are stronger.
But as much as the part of my brain where the fear lives fixates on that, the part where logic lives knows that it’s irrelevant. No one should be coming out of this process struggling emotionally more than when they entered it. They should be in a position where the security and services that become available allow them to gain skills, either to better their quality of life or to eventually not need financial support, even if they do need the medical. None of us should be having to scrape back old skills because we lost the connections that allowed for them.
I’m terrified to post this. But perhaps that is because of what I’ve written- and maybe that fear is what has kept someone else isolated too.
A reminder from the fog
I have things I want to do, want to write about. I wanted to write about disability voting for Persephone Magazine (I contribute occasionally, though lately it’s mainly been food posts). I’ve had a number of things I intended to write about for here. But every time I’ve tried to sit down to write something prompted by myself, I’ve ended up staring at the writing field blankly.
I’m frustrated with myself. A part of me spends time berating myself, reminding me that I can and do write fairly well some times so I ought to be able to churn something serviceable out when I want or need to. It’s more than writer’s block- I get that too sometimes. I have all the ideas there, but the brain fog has been interfering with my ability to put them into the text box coherently.
I know where the fog comes from- it’s my fibro and arthritis pain mixing with my neurology. But I also know where the frustration and the self doubt comes from too. I’m not the only one struggling with that one.
I’ve had friends who have told me things about their struggling. Some do have brain fog, but a number of them don’t. Some have had disabilities their whole lives, some have had them without words for them, and some who gained disabilities later on and their lives. Many have very different tasks that they struggle with. Some of them struggle more with tasks I also struggle with. A number of them struggle mainly because the things they need to succeed aren’t met or are met hostilely.
See, it’s the hostility that makes a lot of it all worse. A hostility to the idea of alternative needs in order to accomplish things. Hostility to the idea that one experience of a situation is not going to be the same for each person. And this hostility breeds some dangerous, some might say poisonous, memes in our culture.
I think I’ve talked about memes before, not in the internet sense but in the anthropological and sociological sense. They are basically a unit of culture. An idea, an image, archetypes- these are memes, elements that make up culture and society. We live in one which perpetuates hostility towards people with disabilities. And a lot of the memes that make up that hostility are ones that we find ourselves repeating when we are frustrated.
That our needs aren’t real. That we are actually just not trying hard enough. That we are actually just bad people, or lazy people, or selfish people. None of these are true, but they are memes in our society that we have for people.
There’s lots of things that perpetuate it. Some of it is direct- people actually saying these things. Some of it is a consequence- someone using these views to “legitimize” denial of access. And some of it is subtle- like inspiration porn. A lot of people have talked about that last one in recent months. But all of it is a part of our society and culture. Not a good part, but still a part.
And we are all taught culture through these memes. It’s not an avoidable thing. True, some people don’t get the direct impact of it from the subtle parts alone. But they get it indirectly, from the messages that the people around them absorb and then act upon.
It is impactful, the expression of these memes. Someone with attention issues might need to doodle to keep their mind on a speaker, but get called unprofessional for doing so even though they need it to process what they are hearing. Another person might suffer from chronic migraines when around certain stimuli (like florescent lights), but have their need to have alternative lighting treated as being finicky or annoying. Someone who might need things in simpler language might get left out of choices about their lives, or are told that their goals aren’t reasonable without explanation. A child who uses an AAC device might find themselves or their parents pressured into a segregated classroom.
Years of this cultural environment takes their toll. When a person subject to it, to the “pointy end” of it, becomes frustrated about something, it turns inward. The fact that they’ve worked themselves to exhaustion, or have agitated a difficult part of their health by going beyond where their limits are, doesn’t prevent them from calling themselves lazy. After all, other people have said it about similar efforts by other people. The same with worries about being called “selfish” keeping people from asking for accommodation, or “drama seeking” when you report discrimination. None of these are legitimate statements, but they are all things that society’s attitudes attempt to legitimize through cultural means.
We feel these things as consequence. We feel that maybe we are lazy, maybe we are just bad people, selfish people. It is a difficult thing to stop thinking when things go bad. It’s hard to unhook those representations we see, the ones that tell us that failure is just because we didn’t do x enough. That we aren’t y enough for our struggle to be real, that we must be some sort of bum, drama queen, or whiner.
But it’s not true. We’ve lived, survived, a hostile world that would rather believe those things- that people like us must just be lazy fakes, that we are just bitchy people, that none of our reality is true. We’ve been raised in a culture that believes those things, we’ve had it ground into our minds.
Just because we resist doesn’t mean we don’t stilll have that thought in there. It’s been ground into us. Even those who come to life as a PwD later on, as it’s a societal thing, not an individualized thing. It’s a horrible thing, a painful thing, a thing that challenges us and makes us want to destroy parts of ourselves at some points of our lives.
We are real. And we don’t need to destroy ourselves. We don’t.
The medication I took earlier in an attempt to dismiss the brain fog is wearing down a little, as it doesn’t last too long, and soon I’ll be back in a place where the ideas are there where the words are not. I’ll read things and have feelings, but barely be able to come up with a way to say that I have them, let alone make a meaningful or thoughtful response. I’ll be able to put together other people’s points into meaningful words, but be unable to order my own points. And I will be frustrated at some point.
And I will survive it. Maybe I’ll come back to this, or you will, to remind myself, ourselves, what the self-doubts and self-flagellations really are- internalizations.
BADD: Something
I didn’t think I’d have something to say today. I haven’t been able to organize my thoughts in the way I need to to write here, and I have a list of things I need to get done that. . . well, it just hasn’t thus far. I thought that I wouldn’t have something to say for Blogging Against Disableism Day, or at least not something that was worth posting here.
I was wrong.
I just finished reading Amanda B’s first post for this year’s BADD (she wrote two) and . . . Well, I found myself upset. And not just because her posts are on distressing issues around abuse by caregivers, but because I had just recently been trying to articulate some of the things she wrote about being conditioned to believe our support needs are unreasonable. Amanda was talking specifically about issues with staff and care givers being abusive, and about the cultures that support that within provider systems. But the conditioning is something I’ve been working on fighting out of my own head, and I’m someone who isn’t getting adequate supports or services. (I have less extensive support needs staff care wise and equipment wise as my health and skills are very different from Amanda’s, but that doesn’t mean I don’t need supports.)
I’ve been depressed lately because of how long it has been taking for me to get housing, and because the type of support that I need to navigate that type of system it is more complicated. As a result, my family has been truly over taxed in trying to make sure I’m not living under a bridge or someplace where predatory individuals would have access to me. My family members have disabilities of their own to provide self care for, as well as not really having the financial resources to support me in a way that respects their own needs. It’s not that I have super intensive care needs in general- once I have a place and can set up my charts and other adaptive methods, I might need a couple hours a week to help coordinate bills, cleaning schedules, and transportation. But they are still needs that are amplified by not having a permanent home that I can set up as an environment that is suited to developing or maintaining my Daily Living Skills.
However, I also know that I cannot cope at all when I don’t have some obligations or responsibilities to meet. Accessible, meaningful involvement. Unfortunately, none of the things that are immediate to my situation are things I have the skills to navigate. Instead, online things and meetings and disability justice work are the things that allow me to cope, to endure not knowing for sure where I’m going to be sleeping next week.
But my needs for this sort of meaningful activity, and the relatively easier and less expensive to provide supports I need to do them, are characterized over and over as unreasonable. Unreasonable in light of how I haven’t been able to get housing. Unreasonable in light of needing someone to work one-on-one uestion by question with me to fill out assistance forms, or even in writing an advanced directive when I know basically what I want.* Unreasonable because I need some help in managing my money, because when I try I end up just not buying the things that I need and doing without until it hits crisis even when there’s money for something.
*That set of needs in and of itself is called unreasonable in light of how “smart” I am, how I can be involved in national level policy review, how I scored so high at English in high school. That I can write and review policy somehow means I must be able to apply each step to my own life accurately, without assistance. That there’s a different set of neurological skills between writing big things or reviewing big things and applying those to a very specific case in a way that uses standards measured from the outside is not fathomable.
This past weekend, it didn’t work out that I could go to a family member’s. So I went to the cheapest hotel in my county with wifi, and checked in. (I even agreed to watch my niece on Friday night, as she and I get on well and my sister needed the support that having someone else handling her would accomplish. The sort of support that if the dad had been willing to provide when it is needed two nights or so a week, wouldn’t be a problem.) But when the hotel’s internet was not operating appropriately, all the things that I’ve been told- the things I’ve listed in a heavily limited way above- came into my head.
That daring to have obligations to fufill was an unreasonable thing for me to have done, even though they are obligations that aren’t terribly extensive. That needing reliable internet access because I had been asked to complete one thing was something that somehow made me an extra burden above and beyond. That contributing at all can’t happen somehow when you can’t hold a job that supports yourself. That while my disabilities do not make me something aweful, that my daring to participate in the ways that are accessible to me somehow does.
I know that it is all programming, that it is the sort of behavioral training in action that Amanda is talking about when she says that you don’t need locks or restraints to practice seclusion and restraint on someone. I am someone who has picked apart the details of how society trains us into compliance for the ease of others. How being a part of a marginalized group means that we have epic fights against the things inside our heads in order to survive. I’m someone who films myself daring to reject indistinguishability, who knows that we make tiny revolutions by demanding that our determinations of what we need are listened to. Someone who lives and metaphorically breathes disability rights.
And I’m still digging out the conditioning in my own brain that reduces me to a something, to a burden and an unreasonable. My mother is still unraveling the complexity of what access is vs “enabling” (which is a complex mess to dig around in itself). My sister is still without her GED because when she has to directly interact with her acquired learning disabilities, the things she’s internalized over the years both when she was a norm with a disabled sister and after she acquired disabilities collapse her incredible demonstrations of self confidence.
When we talk about the impact of disableism, we are talking about trauma, a trauma that can be obvious enough to shriek or subtle enough to make being explicitly told that others will help us access our world a shock, a pleasant surprise. We are talking about outposts in our heads, and the outposts in other people’s heads.
We are talking about how some nights I lay awake worried about the day when my niece no longer thinks I’m awesome, no longer misses her buddy Skylar, no longer meets a family friend’s kid at his level of interaction because it seems horribly inevitable that she’ll learn the memes of disableism in our culture. Because even with some of the amazing bits of joy and hope that people share- Dave talking about Ruby’s dance class, Brenda talking about her love for her son as a whole person- it’s hard to believe that the hope that it gives will turn out.
It is so hard to believe something that amazing can last when you live in a world where it’s socially acceptable to exercise disableism, to raise children with disabilities around language about brokenness and tragedy into adults whose hearts break daily because it’s hard to unlearn that stuff.
But somehow, it is still something worth writing, and fighting, for.
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(A different, positive, musical Something to play you out.)
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[Content: Abuse, ableism]
I don’t want younger Autistics to learn some of the skills I have- or, at least, not the way I learned them.
Let me explain- it’s not that I’m against someone deciding to learn a new skill that they want or need to learn to achieve things that they want. I’m not against teaching a kid of any neurology new things as they explore their world. But there are some things that aren’t worth the trauma- the long term emotional damage- of how they are taught. Or, at least, of how they are taught to Autistics.
Recently, I was teaching a friend how to do dishes. Step by step, gently, with examples and tips. Feel as you wash- if you feel any grease or food bits, it’s not clean yet and you need to keep scrubbing. Later, I paused in the middle of pouring myself some water. You know, that’s not how I learned to do dishes. I learned it traumatically.
My mother was working when we first had “big” solo chores. We rotated chores between all three siblings. My mother’s second husband, whose death I talked about in my last post, was the adult on hand for chores. He herded me into the kitchen, and told me to do the dishes.
It wasn’t “casual” ableism that he used then. It was fierce and directed. He loomed over me when I said I didn’t know how, and used it as “proof” that I wasn’t really smart- the only alternative had to be that I was lazy. So I tried doing the dishes while he went off to do his thing. I pondered on the fact that there’s cross cultural archetypes of Cinderella while I tried. When I finished, I would declare it with relief.
He would loom again, and wave the dishes in my face. He would tell me I was obviously trying to get out of doing my fair share, because they weren’t done right. And so I did them again, over and over. I think I threw up a couple of times at first- I hate the oily texture at the bottom of the sink when people fail to scrape their plates, and the smell of used dish water. Letting the water run was not allowed if Rick was watching, so the smell and oilyness of the first rinse was there, while the soap bubbles waited in the second sink for a rinse. Not even gloves were an option- instead, I was to learn to deal with the sensory assault that was my “fair share” of keeping the household.
I believe he enjoyed his use of humiliation. His combination of verbal and physical intimidation was effective in eventually teaching me basic skills like this, the very technical skills that are the building blocks of independent living skills. The process was repeated with a lot of skills and “skills”. Vaccuming and laundry went hand in hand with passing, with not looking “crazy” and not echoing “nonsense”.
The Wise man doesn’t speak what he knows. And I wanted to be wise, because according to Rick, no one would believe I was competent.
It was better when my mother was home, but there would be little reminders that would just seem stern without the context that happened when she was at work. But the repetitive enforcement of my lack of skills, of how bad I was at covering, at passing, was just as destructive if not more than the times he loomed over me. The same things I observe being used to teach kids with similar behaviors today were the hardest part.
When the inevitable meltdown happened, it seemed, from the notes she took, unprompted or triggered by things that were relatively innocuous. That’s not to say I wasn’t easily triggered before, but they were always specific things, things she could figure out.
Rick had been gone for more than 5 years before I could articulate half of what happened to me. It was two more before I could do it well enough to get it across to my mother how much she had missed.
The damage done in the name of teaching me skills isn’t worth the skills. It isn’t worth the years of self hate, the years of denying myself the services and supports I needed in order to prove his tirades wrong. It isn’t worth the nightmares I still have of his eyes when enduring forced eye contact.
Look me in the eyes. If I let you grab my chin and point it somewhere- especially at a face- you know I trust you.
You want to talk about how hard it will be for your son? How you just want your daughter to get married some day? Stop. Stop thinking about your own wishes, your own images of how your kid’s life will go. Look at the skills they show interest in. Find what they are personally ready for, instead of what some book says is “developmentally appropriate.” Let them build their own image of what success is.
Because the trauma of forcing someone into a schedule they aren’t ready for? Of forcing unneeded skills? Of removing non-harmful but socially difficult coping skills? Of holding up your own wishes and ideals as the goal?
Isn’t worth the trauma.
