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.
___________________
(A different, positive, musical Something to play you out.)
On Childish Things I
[Content Warnings: Abuse, ableism, spiritual violence/abuse, misapplication of biblical concepts as justification, denigration of “childish” behaviors”, mention of disordered eating]
“The things which the child loves remain in the domain of the heart until old age. The most beautiful thing in life is that our souls remaining over the places where we once enjoyed ourselves.” – Kahlil Gibran
When I was a kid- and I mean between the ages of 8 and 13- I was desperate to get away from anything I liked that were “childish things.” Cartoons? Muppets? Books with pictures in them? All became objects of shame. For me, though, this was not triggered by an internal dislike. Here, I cannot speak to the lives of other Autistics. I know a number of my friends and collegues who never faced this particular pressure, even if they faced the same taunts. The same use of “childish” as a dirty word.
My mother’s second husband, Rick, was a big man, and a bully. Speed, attention, interests- all were made into critical faults in me. Even hunger after school was pointed to and mocked when my mother wasn’t around, fostering an unhealthy relationship with food I still haven’t been able to shake. His treatment of me was often explained away by two interconnecting concepts. The idea that as a child with disablities, I both needed treatment and couldn’t accept it as “right” was a big one, but the other was the concept of “The Willful Child.”
“When I was a child, I used to speak like a child, think like a child, reason like a child; when I grew up, I put away childish things.”- 1 Corinthians 13:11
Today, I may be Jewish. I’ve even taken on my ethnically Jewish stepfather (my mother’s 3rd husband)’s last name, Breakstone. But at that point in my life, my immediate family all practiced some variation of Christianity. I could talk about specific denominatons or sub-faiths- from Dutch Reform to Jehovah’s Wittness- but in truth, what was held in our home had less to do with a denominational affliation and more to do with Rick’s idea of using biblical teachings to his conveniance.
One of his favorites when it came to me was the concept that some of you may be familiar with of “The Willful Child.” James Dobson’s books on this idea- The Strong-Willed Child- may be fairly known now, and maybe they were at the time as well. What I do know about how they were used at this time was how they were used at my house- the same way the bible itself was used, at least when my mother wasn’t home. The principles were twisted to Rick’s convenience. (My mother and I personally found that “The Explosive Child” by Ross Greene worked a lot better for me in the end.)
While at the same time encouraging services and at home abuse as “needed treatment,” Rick also labled my behaviors as that of the willful, sinful child. I was told that I was everything that a good “Christian” child was not, be they actually backed up by biblical text or not. Resistance to abuse was also framed as childish, and as willfulness. Both typical behavioral censure and spiritual censure were used against me for things as simple as wanting to continue playing with something or not cleaning up fast enough. (In retrospect, it is no wonder it took me so long to admit that even as a child- and I hope not to offend my Christian friends and readers- I found the concept of a risen Christ improbable at best.)
Perhaps most devestating in the long run was how this censure was used to divide me from my siblings. Today, I have a supportive relationship with my sister. But at the time- and to this day with my brother- this was not true. My behaviors, my failure to live up to Rick’s idea of an obediant young woman, were held up to them as a model of everything they ought to strive against being.
I think my Catholic friends might be familiar with what my behaviors were labled under different names. Lazy (Sloth) was a big one because of my lack of speed and efficiency. Angry or even violent (Wrath) when I was reduced to lashing out as resistance. Fat, chubster, and so forth (Gluttony) for hunger and later hoarding behaviors. While I avoided the traditional concept of vanity being played against me until my eating disorder had excelerated, elements of it cropped up in accusations of selfishness (Greed) and willfulness whenever I attempted to establish boundries about my self, my privacy, or my belongings. Indeed, my distress when several things I had charished as perhaps only an Autistic can were lost in our move to Pennsylvania were added to my greed and willfulness. The only “Cardinal Sin” I was not accused of in some way was lust, though I’m not sure if it was through the non-consensual labling of PWD as asexual (as opposed to labeling one’s own orientation as such) or if it was my age.
I could- and perhaps someday I will- write a full length book about the things that happened when my mother was not at home. I want to reaffirm right now that other than her obliviousness to what was happening my mother did right by me in every way that she could. I believe that in part the spiritual abuse she was facing- an abusive form of complementarianism combined with a religious bigotry against divorced individuals- combined with her own ADHD that allowed things to be missed. Additionally, Rick’s articulate dissmissals over my barely articulated- if you could even call it that- complaints of “unfairness” would be hard to dismiss in our society even without the abuse she was facing.
When I started this post, I didn’t realize how much spiritual abuse played into this, nor how much “willfulness” and “childishness” had been conflated. In any case, they were conflated and tied together. Indeed, any sign of so called willfulness were pointed out as evidence of why Rick’s claims that I would never grow up, that I would be perpetually incompetant to make my own choices just as a child would be. I became desperate to prove somehow that I wasn’t childish- that I wouldn’t stay a child forever.
Unable to eliminate my “childish, willful” behaviors despite my own best efforts and Rick’s “treatment,” I searched for other ways to escape this censure. The only thing left to me was to eliminated the outward trappings of childhood as much as possible. Things that I enjoyed became things to avoid at all costs. Cartoons were an especial target, even if they weren’t designed exclusively for children. We didn’t have TV- we couldn’t afford cable, and there were no channels that we recieved reception for- but we did have VHS tapes.
No longer could I enjoy, for example, the animated Hobbit and Return of the King. I forced myself to bury my distress at having lost my Disney movies (they were among the things that were lost in the move), and struggled when my brother’s interest in Beauty and the Beast and The Nightmare Before Christmas flourished as we entered our teens. Even my enjoyment as a child of puppet based television such as the Muppets or Fraggle Rock were to be eliminated.
Toys, too, became objects of dirision, even ones that were educational or even deemed “age-appropriate.” I had never really played with my toys the way some children would- I stacked my dolls or created displays of them unless another child was present to direct play. But now even creation of toy based dioramas was taboo. My drawings became focused on more mature subjects and styles. I began to draw, for example, scenes of the slave trade instead of costumes when my interest in history shifted to the Civil War era.
Indeed, I struggled even with my special interest in history. While it can be a mature and sober pursuit, it had initiated via a children’s book on dolls from the Victorian period. My readings turned from child appropriate texts to thick novels and non-fiction accounts. I think I would have turned to them even without this pressure, but I don’t think I would have been so strident in avoiding books written for children my age. Perhaps I wouldn’t have mocked them as harshly.
My own sense of aesthetics was also to be challenged anytime it might co-inside with “childish things.”
One thing I couldn’t rout out, though, was my interest in fantasy and magic. I did try to limit it to “classics” of the genre though- instead of contemporary young adult fantasy I read T H White, CS Lewis, J R R Tolkien, and similar almost exclusively. The exception was in the school library, where I read every vampire novel I could get my hands on. Even there, though, I tried to form a preference for classic, genre development specific stories such as Carmilla. I don’t regret this, as it did eventually develop into my sub-interest in Gothic Victorian Romantacism which I indulge in to this day. I did take joy in it, but I trained myself to limit my expressions of that joy.
Fairly early on, before things became more obviously abusive, my expressions of joy and comfort were limited. If seen on a timeline, this was the “first” target, though it is one that regretfully many parents of Autistics target. Flapping was eliminated. Bouncing was frowned upon. Toe walking was framed as inappropriately timed and poorly executed “ballet” play. (I was interested in dance when I was very young, but by this point I was not.) Wiggling my fingers was wrong. Even those “allistic stims” of leg jiggling or finger tapping were a basis for censure, pointed to as proof that I was unthankful, impatient, and willful. The only acceptable forms of joy were smiling and sometimes- and only when deemed appropriate- laughter. Seeing as how smiling wasn’t an automatic thing for me, especially when feeling simply happy, this didn’t become terribly common.
Children need models rather than critics.
– Joseph Joubert
This post has gone much deeper and longer than I ever thought it would. It has been harder to write than I truely expected, even after thinking about it and predrafting it in my head for a month. I’ve decided to save the second half for another post, which you should expect tomorrow. It covers the working through and reclaimation of joy, among other things. EDIT: The second post, On Childish Things II, has been posted.
This post is dedicated to my mother. Without her, I would have been forced into institutional settings and would never have been able to move beyond this to reclaim joy.
