How we survive- Or don’t

[Trigger warnings mainly for suicidality, but also for abuse, neglect, medical abuse, police brutality, ableist violence and plain old ableism]

Here’s the reason I’m still here: Because at the times of my life, my childhood, my teens, my adulthood, where I’ve wanted to die I’ve had people I knew would be upset I was gone.

I’m doing really well with my mental health over all lately- I have had a few bumpy days here or there, but I’m overall a happy person now. Even when I’m having the bumpy days, I’ve become someone with a happiness underneath inside me to keep me moving and using positive coping strategies. Even on days when I have panic attacks. Even on days where I’m having flashbacks, though it’s buried pretty deeply on those days. Even on days where I feel a general hopeless miasma. It feels surreal, if I’m entirely honest.

It feels surreal because for the vast majority of my life  to this point I’ve lived my life with the undercurrent being a constant feeling of worthlessness. I make no secret that I have been hospitalized for suicidality a decent number of times, though mostly in my teens and childhood. I’ve been coercively hospitalized most of those times that I’ve been hospitalized after the age of consent to treatment, told that if I didn’t “voluntarily” go that they would issue the legal documents to involuntarily put me there.  The others were because of a fear that they would reach that point if I didn’t.

Here’s how I survived, and it had nothing to do with hospitalizations. (For me their major benefit was as a reset for environmental triggers, not treatment.) I had a few people who I knew would be devastated either emotionally or, when I was at my worst times, financially by my death.  I don’t mean the sort of things that a long spoken piece I heard last night at a suicide prevention fair was meant to force you into guilt out of. I mean a more organic level of guilt, not one imposed by others, and a pathological but useful level of anxiety over how I impact others.

I worried that my best friend would struggle emotionally if I died. (He has saved my life multiple times both this way and by being present for me.) I worried that people would judge my mother. I worried I would be even more resented. Later, as it became worse and a lot of this became harder to care about, I became fixated on the financial burden my death would cause my family. The Average American cost of funeary expenses is $8-10k, and can vary also depending on what your state requires (there’s some real… lobbyist dictated laws on deathcare) and your personal and religious needs. Knowing how much it would cost my family both made me feel worse about myself and also kept me from following through on my ideations.

There were a few times where I had a more passive suicidality, where I was too depressed to do anything to take care of myself without detailed step by step prompting. In those cases I wasn’t dependent on these, but because it would have been suicide by neglect all it took was heavy prompting to get some assistance, to read, to do the coping strategies even though I didn’t feel they were working. These were effort intensive for my loved ones. So was my mother fighting off medication induced psychosis, suicidality, and health issues when I was in middle school. So was my mother  fighting the school to keep me, a crazy person with a DD, not only in school but in access of academic content suited to what I needed not just what their lowered expectations were. So was my mother fighting against the repeated recommendations to put me away in a juvenile psychiatric institution. And ALL of it was worth it- and would have been even if my MH status had never changed.


I never thought I’d live past 20/ where I come from some get half as many

— Hamilton in My Shot, from the musical Hamilton by Lin-Manuel Miranda

I really didn’t. Past 20, then past 25. And yet I will turn 29 this summer, and 30 is fast approaching.

Where I come from, though, wasn’t a place or time where people were dying of childhood diseases and fevers on a regular basis, wasn’t a hurricane plagued region, and wasn’t in the situation of being an orphan.

Instead I came from group therapies, wards, and treatment settings. There are people I was in these settings with whose brain got them, either because of what they were already fighting or because of medication induced symptoms. Some got off with even harsher health side effects to abusive over medication practices by our providers than I did. (I’m not anti-med, I’m anti-uncritically assuming they are right for every case and the assumption that you are safe to simply accept what is dictated by a P-doc without question, which is how the system is actually built.) Some in these settings ended up getting restrained to death, or secluded until they stopped finding a reason to continue. Some ended up having attachment therapy techniques rec’d to their parents- techniques, like aggressive holding therapy, extensive isolation periods, and extensive food based reward-punishment systems that were unsuited and left them malnourished as punishment for being disabled. Smothered, starved, neglected.

Some had those causes of death, but at the hands of parents. Some accidental, some on purpose. Some were buying into the mercy killing narrative that permeates our society. Some were trying to administer restraints or a holding regimen and were told that their child yelling “I can’t breathe!” was a punishable behavior or symptom to be ignored by the people who trained them. Speaking of people who couldn’t breathe, some were killed by cops who saw their crazy and far too often their race (or just their race and later used their crazy as an excuse for their paperwork) and restrained them to death, or neglected needed medical care, or just outright shot them. Their killers in either case either got off or got off light in too many cases.

And some just fell so far out the cracks of a system that ignores the need for high LoC Community based services for people who are “just crazy,” or didn’t “have time” to follow through foster systems well enough.

And every single one of their deaths were tragedies. None of them were blessings, and to say they were shows an appalling lack of belief in our humanities. Many of us were difficult to support and took a lot of effort to support, and we are worth more than having our deaths summed up as a “relief.” We are and were all whole real people- whole real people with heavy struggles and deep pain, whole real people called broken to our faces, but we were and are Whole Real People.

None of our deaths were blessings.

Lists and doing them sadly

[Content: Mentions of Depression, of Partial Hospitalization programs, and of the feelings/enjoyment/good at charts?]

One of the exercises I learned as a kid about depression involved making a list of the Things I Enjoy Doing. There was also the Things I Am Good At list, and the These Faces on the Chart Match My Feelings Today list. There were lots of other ones, but I’ll stick to these ones because they are the Alternative Coping Mechanism lists.

When I was in a partial program, the day would begin with listing the feelings off the chart of faces on the wall, and this would happen at several points during the day- usually at any transition. Part of it was to track our self assessment, but it was also supposed to help us identify our feelings more accurately, and learn what the facial expressions were for them. If someone showed an emotion “wrong” the teachers would demonstrate “appropriate” ways of showing emotions. If someone chose emotions that flagged their depression screens, we’d have to add an extra thing to the “Things I Am Good At” list. I’ve also seen it listed as a “Strengths” list. Every day, we’d have to come up with 3 things we were good at. It was passable to repeat the same things most days (which I did- I did the same for the face charts most days) though coming up with new ones was a “good sign.”

If I remember correctly, my charts usually looked something like this:

Mood: Apathetic/Ambivalent

Savannah is good at:

    • Animals
    • Reading 
    • Art

I seem to remember a lot of “Ambivalent” on my sheets after a staffer explained what it meant. And I could list off those “Strengths” half asleep by the end of  my time in the partial program.

A lot of time was spent on the identification of “appropriate coping skills.” We had lots of sheets and stories on the differences between passive, assertive, and aggressive responses to things, but like several of the kids in the program I found practicing them difficult- I could repeat line by line the “assertive” response I was taught at home, but if it was my mom’s second husband this was a “behavior” and “manipulative,” so what was the point?

The other was the “Things You Enjoy List.” It was basically supposed to be a list of things you liked doing so that if you began to slip into a depressive episode then you could look at the list and do one of the things to remind you of good feelings- or at least put off the omni-present gloom of a depressive episode for a little while. At the time, my list was essentially as follows:

Savannah Enjoys:

    • Playing with animals
    • working with animals
    • reading
    • doing art

Seeing as how this is basically a re-wording of my “strengths” list, I think that I had quite a few frustrated staff trying to figure things out. I had a dog, maybe more, at home at the time (my pet timeline and my treatment timeline aren’t ones I have attached to each other to be sure,) and I sometimes would volunteer with the support of my Theraputic Staff Support at a local hab aide riding facility. (Though I think that might have been after the partial program…) Since they were trying to teach me social stuff too, having me go read to myself in the corner wasn’t exactly feeding into the treatment goals that had been developed, and there’s only so many times I go from group art session into hyper focusing on my own project to completely miss the group part before they throw their hands up in the air.

The one exception was in the summer when an additional word was added: “swimming.” We would “field trip” once a week if we were there during summer sessions, and usually it would be to the pool. While there was some supervision, it wasn’t close enough to tell the difference between playing with other kids and playing in the midst of other kids in the pool. I lined up in lines to jump into the deep end more because of knowing that if I didn’t the life guard wouldn’t let me jump in at all. But as the pavement left my feet and I plunged into the pool, it was heavenly.

I get why they made us do these lists. One of the things that always ends up on the “things to help with your depression!” lists is “do something you love/a hobby.” And it’s good advice- unless your depression manifests itself by making even things you love unappealing. You know that you really enjoy super heroes, or crime shows, whatever, but when you scroll past them on Netflix or Hulu none of them seem interesting, nothing appealing. You got a whole big stack of Forensic Anth style Crime novels, but starting that first book seems … unsatisfying. You have a massive knitting project that you loved when you started, but you went on hiatus and now that it’s been a while you can’t remember why you enjoyed it.

At least, that’s what it’s been like for me for a while. It’s pretty much horrible- I love being able to invest myself in something I love, completely zone into it for hours and hours on end. I like to hyper focus, to learn a ton of facts that only seem important to me, to have access to knowing everything about such and such a thing, to watch every episode, read every book, listen to every song in a completest fashion. And a lot of times when I’m depressed, it robs me of that. I can’t even get started on binge reading the Tudor book I picked up a few months ago and was so excited about.

For a while, I was working on this by baking once a week regardless of if I felt up to it or not. This worked best with cookies- They are pretty basic to make, but you can also make them as complex as you like. I’m a pretty good baker according to the people I feed, and when I complete something there’s a tiny pop of having completed something- almost like the feeling of gaining experience points in an RPG.

So I know that actually following through can help stymie a depression spiral. The problem is actually following through on doing things. And when impaired Executive Functioning mixes in, identifying those things in the moment is just that much more difficult.

So I’m going to do a bit of a sad list here of things I know I enjoy, but which I might forget about. I want to take this idea that was used a little awkwardly for me in a treatment setting, and rebrand it as my own and as an assistive tech of sorts. If you are reading this and want to join me, feel free to do so whatever way feels worthwhile for you.

This is about helping you. It isn’t about making others feel better about your depression/anxiety/etc. It’s about having a tool to help yourself. The things you write down only has to be things you enjoy, and as long as it isn’t harming others it doesn’t matter what it is. If it’s flapping and rocking for hours, that’s fine. If it’s meowing in your room, that’s cool. This is about you and what might make you feel good, not any one else. Yes, you may want to have a safe, private area to do them (you don’t want to harm people or subject yourself to undue risk/the law) but they are still for you. You can do them in whatever tense you like. I’m doing third person partially because of familiarity, and partially because I want to break off the connection between writing about my care plans in third person and leaving them in the control of service providers and staff who might or might not have my best interest at heart.

Things that Savannah remembers enjoying that she might forget:

  • Baking things. Savannah likes baking things. Cookies are easy.
  • Cooking for other people. This sadly requires other people, as cooking for herself is a different set of brain ordering and decision making, so Savannah rarely makes complex dishes just for herself.
  • Going to the coffee shop to write. Savannah likes the coffee shop and the people there, and even though Savannah is nervous about actually interacting with people who aren’t on her “safe” list outside of advocacy contexts she does like being around people in small to moderate amounts when non-scripted interaction isn’t needed. 
  • Writing. Savannah likes writing, but she can’t get started much of the time because of her Executive Functioning issues and/or self-consciousness. 
  • Savannah likes throwing things when she is frustrated. Savannah has soft things that she can throw in a room safely, so that she doesn’t harm people or objects in doing this when she feels she needs it. 
  • Savannah likes Earl Grey Tea, especially in the Star Trek Mug. The steps in making EGT are: 1) get out cup 2) get out tea bag 3) put tea bag in cup 4) put water in electric kettle 5) turn kettle on 6) wait 7) electric kettle clicks off 8) Savannah pours water over tea bag 9) tea steeps 10) add a little almond milk 11) drink tea. 
  • Crime novels. Savannah can either read them or listen to them on audio book from the library. Savannah has a big stack of Patricia Cornwell books to read. 
  • Sci-fi and fantasy stories. Savannah likes sci-fi and fantasy. Even though she is tired when the TOR.com newsletter comes, she should try to remember how much she enjoys the short stories in there. 
  • Savannah likes vocalizing. This is not the same as talking, but can including singing. Meowing, purring, beeping, meeping, and screaming all are examples of vocalizations that make Savannah feel better. (The screaming is better for up at Her mom’s house in the woods though.)
  • Savannah likes the recumbent bike. It doesn’t put stress on the joints the way that other equipment does. But Savannah both has difficulty getting to it, and has a hard time seeing it as a priority. She also needs to be careful not to over do it, especially when she has stuff to do the next day.
  • Savannah likes certain TV shows. This includes, but is not limited, to: Doctor Who; Law & Order (various incarnations); Criminal Minds; CSI (NY or Original); Bones; Agents of Shield; Sleepy Hallow; Project Runway; Castle; Eureka; Warehouse 13; Numerous genre stuff that the BBC puts out; regency-ish period dramas; American Pickers; Oddities; and so on. 
  • Savannah has a lot of youtube channels she watches. She does like the science ones a lot, but she needs to remember that she also likes the non-science ones she’s subscribed to, so maybe she should watch some of those beyond vlogbrothers and weezywaiter. There’s nothing wring with liking the science channels, but Savannah is often pleasantly surprised when she follows through watching the other channels too. 
  • Savannah likes genre movies. She often forgets about watching them because they seem like more energy than they really are. It is okay is Savannah doesn’t remember what the movie was about later, too. It’s okay to turn it off half way through if Savannah decides it’s actually bad and it’s not about trying to watch it like normal people. It’s ok to get distracted and wander off while the movie is running. 
  • Remember: Savannah particularly likes watching Super Hero Movies, Period Dramas, and The Decoy Bride. It’s okay for Savannah to watch Captain America or any movie as many times as she likes as long as she gets her work done and she falls asleep before sunrise. 

Okay, that’s my attempt at an undated and more useful to me list. What does yours look like?

Quickly, Now, Present.

Yesterday, Linda Holmes wrote a review of Allie Brosh’s book (which you should all read– if you haven’t read her blog, she’s a painfully real yet comedic story teller, and if you have there’s some new pieces in it.) for NPR. Except it didn’t look like a lot of book reviews, it wasn’t static- it was more about what it means for Brosh (and others like Donald Glover) to write about their struggles not from the perspective of having overcome them or left them in the past, but of having them in the present. I feel like the following gets to the core of the essay:

But there’s something to be said for the currency of Brosh’s vivid, sometimes nervous-making chronicles, or of Glover’s scribbled notes. It’s very sterile and very misleading to hear about battles only from people who either have already won or at least have already experienced the stability of intermediate victories. It presents a false sense of how hard those battles are. It understates the perilous sense of being in the middle of them. It understates how scary they are.  -Linda Holmes, Present Tense: Allie Brosh, Donald Glover, And Hurting Right Now, NPR

Holmes was talking about this in the form of writing- be it a book, a blog, or pictures of what you’ve scribbled out in a hotel room.  I do try to engage in this sort of writing myself, but so much of what has driven things has been the past. And I’ve told about my past so often, some of it has lost the painful desperation. Other things haven’t, and I try to limit my posts here on this blog to events that even when they are from the past are connected, somehow, with what things are right now. Current events, new perspectives, placing them within a larger context than “I.”

It’s difficult, but not as difficult as opening up about what is emotionally current in my life, In September, I started a post. I hope to get it out soon, but I’ve been saying that since the day I opened the tab to start writing it. It’s been difficult, even though the most intimate parts are there in the draft folder already, waiting for those finishing touches and paragraphs of framing research to connect it to the larger contexts. But it’s waiting, and going into the file means sitting there, paralyzed as to what words could possibly come next. And with that is a circling terror- is it safe to say this “aloud?” 

Writing about our current emotional statuses is hard. Allie Brosh has written a little bit about it, if I recall, though within the larger context of her depression. I know that when I keep trying to go back to any of the posts in my draft folder, terror comes out. It’s not just confronting the now, getting it out into words, though that too is difficult. Part of the terror is that every word I write brings me closer to sending it out into the world. And that can, indeed, put my freedom and peace of mind at risk, not because of a lack of privacy or anything like that, but because being as open and raw and now as that invites the care mongers to flood in. I fear greatly that people will react as though I don’t have steps in place, as though I’m not surviving through this, that I need rescued. That if maybe I was forced to the “right” doctors I wouldn’t have this now. (Hint: as someone who has had various points of this now for most of my life and have been in treatments for the majority of that time, you forcing me or having someone else force me into another hospital or care setting isn’t the “right” approach.) And by making it go out into the world, I’m putting myself at risk for your loving emotional violence.

I do write anyways. Not always here, but somewhere. I write poetry; I use tumblr. And part of that isn’t just because of writing, but because of the impact that writing can have. I know that writing can change a person’s mind or life— I’ve both been changed and have heard from people whose minds/lives I’ve helped change. But that action goes beyond writing, beyond casting into the void for another void-dweller to pick up and carry next to their heart.

Because that power goes beyond it. I’ve been involved with advocacy for many years now, since I was a child. Large chunks of that has been in mental health advocacy. And when the topic of ferreting out some more, new advocates comes up, the family members present and the service system people present always tag on something I find both counter productive and slightly obscene: “… who are stable/well/successfully managing their Mental Issues now.”

Don’t get me wrong- it’s important to take care of one’s self and to take time for yourself in this work.  Immeasurably so. But that is something different entirely from what those words say. They say that the people who frame themselves as our allies don’t see us as worth working with. That our insights must necessarily be wrong, or useless, or both. It says that they care more about our pasts than our present, let alone our futures.

I hear these words from people who are supposed to be working on changing or reforming the system as it stands right now, and it’s clear they don’t actually want the words and experiences and, yes, wisdom of the people who are in it right now. These people seem, from here, to want to insulate themselves from the difficulties and fear that they would be confronted with in working with someone who they know is “still in it.” They can’t wrap their heads around following through with the needed support to actually work with “those” people— consciously or not, they cling to the idea of supporting a person with Serious Mental Illness (a technical classification) being both a burden and necessarily paternalistic in nature. I do hope that for most of the people I work with it isn’t a conscious thought, but it comes out here and there, and not just on this issue.

It’s a deeply misleading flaw, as much as relying on written narratives which makes those struggles into a past. Then we sit and wonder what went wrong in our efforts, even though the very reasons we bring to people to justify advisories like ours tell us why. We go to offices and we say, “Self advocate advisories are needed because you can’t see what the flaws are if you aren’t on the end that will experience them. You can’t watch flaws in a plan that about a life outside of your experience.”

There are other things wrong with the “but are well now” direction. It dis-empowers people further who are already dis-empowered on both societal and systemic levels. It enforces a framework that leaves those with disabilities that are life long, including those with DDs, being seen as less “valid” observers and contributors. It further continues the stigma about being actively mentally ill, even within circles that claim to push for de-stigmatization. It reinforces the messages that we’ve internalized telling us our voices are worthless. But as far as a fatal functional flaw? I believe that Holmes’s comments on writing are the crux of it.

 It’s very sterile and very misleading to hear about battles only from people who either have already won or at least have already experienced the stability of intermediate victories.

Why Privacy Matters

… even when you are willing to disclose.

Tomorrow, Friday, April 26th, 2013 there is going to be a hearing about HIPAA. Well, that’s not exactly accurate- it is about HIPAA for those with psychiatric disabilities or seeking psychiatric care. But no, this isn’t an entirely accurate description either. It is about how some people truly believe that those of us who receive psychiatric care and have our HIPAA rights respected are somehow a threat to public safety.

They believe this even though our providers are mandated reporters, people who have an exemption for threats of violence to others or one’s self. They believe this even though we are more likely to be victims of violent crime than to commit it. They believe this even though when we report on the violence of others, our voices and experiences are discounted.

They believe us as such a huge threat, despite evidence to the contrary, so much that they won’t even be having any of us at the table as they talk about taking away our rights. That we aren’t able to be truthful, competent, or able to speak for ourselves to such an extent that Representative Murphey has gone on air with his belief that we would be incapable of testifying and that the most important conversation is one about parents and families’ experiences.

Those of you who follow this blog just for the Autism angle might recognize that sort of language. It’s the same sort of language that made our fight last November to get Autistics on the panel of another hearing so important, and that makes our objections to how we are portrayed in the media so necessary.

I’ve heard from some corners of the autism communities that the issue at these hearings isn’t about us, or that some of the efforts that autistics (and ASAN) are doing around this hearing are somehow conflating “mental Illness” and autism. Setting aside the fact that in some places autistics without ID are only able to access supports through the mental health system, and setting aside the fact that some of us have additional disabilities that happen to be in mental health, I still have to disagree. These are the same issues that we face, the same ways our voices are invalidated and our societal consent voided.

Even where we aren’t also people with psychiatric disabilities (and a number of us are, either by birth or because having society tell you you aren’t worthy tends to be traumatizing) , we should be giving our solidarity to the people who are fighting the same fights. And we are fighting the same fights against ableism, albeit from slightly different angles. We have a stake in this too- because ableism isn’t just actions. It is systemic. It impacts all of us, though often in different ways, regardless of our exact disability. There’s a reason we need a cross-disability movement, and the strength we have in supporting each other is just one (important) part of it. There is a song that goes, “None of us are free if one of us is chained,” and you know what? There is a certain amount of truth there.

There is also, of course, the fact that co morbid mental health disabilities or not, many Autistics will be served through the mental health system. The sort of policies this hearing may engender often don’t care if you are receiving services for mental health. They only care about what the services you are receiving are classified as.

I personally am multiply disabled. I have multiple reasons to care about this issue, and that is just reasons that have only to do with myself. There are even more when I think about the people around me.

I am someone who is all about disclosing. I’ve talked, in the past, about topics that are very personal and are too much information for some people. It’s ok if you aren’t comfortable with that, but I have done it for a reason: for every time I’ve had a comment or email expressing concern that I’ll disclose details of my life, particularly as it relates to medical care, I’ve received one if not multiple telling me thank you.  Because they? They don’t feel safe disclosing and it has left them feeling isolated.

And that’s the thing, isn’t it? That people don’t feel safe, or comfortable, and they feel that way for a reason. it is the same reason that disclosure is currently a political act: because the negative consequences can be so great. People regularly face discrimination when they disclose, particularly when their disclosure is about a highly stigmatized disabilities. There is a reason both psychiatric disabilities and autism are on the list of such disabilities that the Department of Labor’s ODEP put out- people unfortunately are still fired or even denied a hire on the basis of disability, even though it is against the law. Housing, too, can be riddled with discrimination, leaving affordable and safe housing harder and harder to come by.

Even disclosing in the medical community has negative consequences. This past month, we had a prominent, multiply disabled, autistic voice who had to fight medical discrimination to have a life saving procedure. So, too, do people with psychiatric disabilities find their medical needs and wishes challenged. I cannot begin to count the number of stories I’ve heard in which people I know, either personally or through my advocacy, whose medical conditions were ignored or even blamed on their having had a mental health diagnosis. Either way, they faced a denial of timely and appropriate medical treatment, not because of a lack of disclosure between professionals, but because the stigma is so great that when we disclose even medical professionals have their judgement clouded.

Just as other people with disabilities, people with psychiatric disabilities have our abuse and murders excused as treatment. Our families feel justified, or at least are told they are justified, in abusing or being complicit in the abuse of us. After all it isn’t just Autistics being shocked at the JRC– young people with psychiatric disabilities are also sent there. Indeed, there is a whole industry around sending young people with psychiatric disabilities away to isolating and sometimes dangerous camps.

I am someone who takes the risks that comes with disclosure, but no one should have the choice to take those risks taken away. It has far too dangerous a set of consequences to take consent to disclosure away from the people whose privacy it would expose. Far too dangerous to take away the right to privacy of a group that must rely on privacy in order to both get support and to avoid discrimination.

I would encourage all of you to sign the petition that ASAN has written calling out the chairman of the committee for excluding the voices of people with psychiatric disabilities in a hearing that could very well threaten their rights. If you are in DC and are reading this in time*, please try to attend the hearing, even if you just end up in overflow**.

Our privacy, even if we chose ourselves not to keep it, is a right that no one should be taking from us. Talking about doing so, let alone having that discussion without us, is reprehensible.

_____

* I’m sorry I didn’t get this out earlier. I tried, but kept getting stuck on the endless examples that can be found of both how we face discrimination when we disclose, and how the language that is being used to justify the lack of People with Psych disabilities is used to justify other miscarriages of justice.

 

**I personally cannot make it- not only because it’s out of my budget to go to DC last minute, but also because tomorrow I have to go face the housing system to prove I deserve to keep the voucher that makes being not homeless affordable. So please, if you can, go; there are many of us who would like our voices or at least persons represented, but cannot make it ourselves.

It Goes All Ways

Content: ableism, internalized ableism, mention of hospitalization and depression, mention of denials of reproductive justice to people with disabilities. 

When I was 20, I did not love myself.

I was tired. I had been in and out of hospitals, been under the care of providers hopeful that a pill would fix my brain. I had been told repeatedly that there was something “wrong” with me. That there were somethings it wasn’t “right” for me to do.

I had moved back home, having had my stint trying to be what I thought an “adult” was fail. A lot of my plans had failed: I’d been so unsuccessful at maintaining a home that I became deathly ill; I hadn’t sought out the support I needed at college, and had to drop for lack of funds; and I couldn’t get a job. I saw myself as incapable enough that I wouldn’t be able to kill myself, and went to the hospital again. Case management was better this time than they had been in the past. They were involved, and we worked on a self care plan.

“What about having kids some day?”

I told her I didn’t think so. I feared. I feared that I’d be incapable as some people assume about people like me. I feared that I’d be stuck in a cycle of hospitalizations, and that having a kid would mean they would lose their mother every two years. I feared that I wouldn’t know how to get support— I certainly didn’t know then what my needs were well enough to articulate them. I didn’t even have a strong enough concept of disability to think of it in terms of supports. I just feared, and I hated myself, and I pushed both of those feelings away by ruling out the possibility. I told her no, and refused to engage in that discussion.

People like me aren’t just told these things. Some of us, like the poor and People of Color, are or were forcefully or coercively sterilized in procedures we didn’t want to consent to. Some of us were denied even the knowledge that we had something to consent to. Some of us are coerced with them, denied a valid choice. We are lied to about our health, about our ability. We have our lives reduced to a gene, to things not to want our kids to inherit. We are told that having or keeping our own kids is by definition abuse. We are even sometimes ordered to go directly against our choices, or threatened with those orders. Our attempts to speak back are often co-opted by groups we may or (as in my case) may not believe in. The idea that we might even be sexually active in a way that might lead to us being parents is even seen as remote.

To be clear: I know plenty of people who have chosen not to have kids.  They made a choice to be child free, of their own free will. It’s fine if they stick to it, and it’s fine if they don’t.

I don’t consider my choices when I was 20 about kids to have been of my own free will. My responses were societally coerced. I had so much self hate, self doubt, and fear that I had internalized that I didn’t feel like I even had a realistic choice. I thought that the choices open to me were to abort or put a child up for adoption. I had been told for so long that someone like me would by default be a bad parent, or an incapable one. So I felt like I had to reject the very idea of having kids when it was offered as a part of my future.

Around this time, I became more active in disability rights work. I’d been doing advocacy since I was very young, but hadn’t connected with the larger disability rights movement. I started writing and believing in disability rights, coming to identify as a person with disabilities rather than hiding them where possible. I even, at one point, had a friendship end because the other person kept arguing that people with intellectual and/or developmental disabilities who need supports shouldn’t be having kids. I believed that People with Disabilities had these rights.

I just didn’t believe in them for myself. I had spent too long in choices dictated by fear and internalized ableism, and uprooting that is a long process that never seems to be over.

About 5 years ago, my younger sister found out she was pregnant. She was 16, and it wasn’t intentional. She was presented with her options— I know, as I was one of the people who went over them with her— and she chose to carry and keep her child. I won’t go into too many details about her pregnancy other than to note that yes, the hormones that come with pregnancy interacted with her disability (she has Traumatic Brain Injury). But she made it through, and the actual birth was relatively easy. My niece was born, and was and is gorgeous.

My sister has had the support of our parents and other family members in the 4 years, almost 3 months since my niece was born. I watched (and helped be a part of) the supports that she needs to be a successful parent.  During this time, I became less and less afraid to ask for supports and accommodation, and slowly gaining the words to communicate and to define what my needs were. I also was becoming aware of the “wants” that I had been avoiding thinking about because they didn’t seem reasonable.

I realized that I would like, someday, to raise a child. I began to think about what I would need to have in place to be the sort of parent that I want to be.

There are some problems, though, that I’m more worried about than others. I have some reproductive health issues that sometimes, but not always, result in infertility. It is treated through a combination of medications that includes Hormonal Birth Control. The reason, in fact, that I’m not currently passed out in my shower or vomiting in pain due to this condition is because of those pills. It raises questions, both about how I’d be able to handle/treat my health conditions when trying to have a child, and if I’d be able to birth the child my self. I’d like to, but if I’m not there are other issues involved.

Fertility treatments can be harder to get when you are disabled.  While it is against the law for a healthcare provider to reject someone on the basis of disability, this type of provider can reject someone for personal reasons. The Office of Technology Assessment of Congress did a survey of artificial insemination providers, which is one of several options in infertility treatment. They found that a large percentage screen for psychological, developmental, and chronic health issues when doing tests to decide on treatment recommendations. For example, 79% screen against hypothetical patients with serious genetic disorders. Another study found high rates of doctors deciding against treatment for or rejecting hypothetical patients with various disabilities, including past suicide attempts (around 40% answered likely to turn this group away) and bipolar disorder (34%).  Adoption, too, is more difficult.

And this is just in the seeking to have children portion of things. Even if my health issues have not impacted my ability to have children, biases against parents with disabilities result in higher inappropriate removal rates, unfounded reports, and evaluations that are not built to accommodate the adaptations that a parent with disabilities may have established. The Family Law system is simply not designed in a way that accommodates people with disabilities. (Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children from the NCD has several chapters on these issues.)

I continue to think about supports, as well as the sort of environment I’d want to raise children in. I know that I’d need a partner dedicated to the family we would build. I’m good with kids, even babies, but I do need times where I have breaks to restore my stress, anxiety, and frustration levels. An involved partner would help with this. I might need alarms and reminders, but these are things that are more an more on the market for any parent. I personally want to raise my child in a Jewish home, with a Jewish co-parent. And, of course, for our family to be one that is highly pro-disability rights.

I want to have children. I want to raise children. Even though I’m frightened. Even though people will challenge if it’s a right I, and people like me, should have. Even if it’s not going to happen for a while. Even though it will mean needing different supports than I need right now. It doesn’t negate the fact that I’m pro-choice any more than it would for any other person wanting to become a parent. To me, it is about choice— about choosing the option that is right for me, myself, rather than having my choices about my body and my life made by someone else.

This is a choice that I’m wanting to make and someday follow through on— and finally, it’s of my own free will.

I Was One of the Scary Kids

Content note: ableism, stigmatization of Autistics and other PWDs, the Sandy Hook shooting

I didn’t want to write about the shootings at all. I knew a number of people (who I’ll link to throughout this post) and organizations would be posting and writing, working to counter the inevitable stigma fail that would happen. I even was keeping to commenting on the links of people I care about, people who I know and who I want to have these sorts of discussions with. Then, it happened. I’ll leave the critiques of the post gawker promoted to others, but I feel obligated to make a comment about some of the assumptions it is based on and promotes.

That comment starts with a declaration: I was one of those scary kids.

It’s not some great proud thing to say. It’s a truth, a truth that when I reveal it makes people behave differently. Admitting that you were a “scary kid” means that people heighten their bar of behavior for you even more than a simple disability disclosure does. It makes even normal responses to threatening situations take on a sinister light to others. Telling someone to back off goes from angry to a threat. Pushing away someone who feels entitled to your body becomes violence rather than defense from it.

It makes people suspicious. It makes people question your ability to accurately report crime, abuse, or health concerns. When you are a former scary kid and let people know, they don’t want to hire you in meaningful positions — or sometimes at all — they don’t want you living in their buildings, and they don’t want you learning at their schools. Your opportunities are curtailed. You are told all the things you will never do.

All of these are true of having certain disabilities to begin with, but when you add in a confession of having been one of those scary kids it is heightened.

I was a scary kid. It makes me sad, but only because I actually don’t like scaring people, though I often can’t tell.

Before the age of 14, I was the sort of child that service providers recommend parents to place in a residential setting — that is, juvenile mental health institutions. Parents were — and are sometimes still — encouraged to relinquish them to the state, who would willingly pay for this kind of care. My mother fought it, and demanded community based services and the training my providers needed to provide it. But she was pressured the entire time, and when I was reviewing her records last year I found boxes of pamphlets and packets that she was given to encourage my placement in those settings.

I also found her private journals about our lives at that time. These were journals she might only ever show excerpts from to a therapist, but were meant to be private accounts. It was scary for her. I cried when I read them, because it was horrible to realize that I had made my mother feel so horrible and hadn’t known. I had not realized that anyone would have interpreted my behavior in a truly scary way, that they wouldn’t see the same causes that I was reacting to.  But she was terrified in those pages — the ones she never meant for anyone but herself to read. Even in her advocacy work, she wouldn’t say that certain events were from my life, just that they had happened to “a young person” she knows. Even the things that she was terrified about.

In the pages of that private journal, she talks about the times I would charge at or by her. To me, I was desperately trying to escape a scary situation for me. To her, it was a charging at. I would throw things, and at the time didn’t have the impulse control to find soft things in a safe space. I never aimed at people, but to her I just had really bad aim. I screamed, and I said things that made little sense — I was scared and angry and frustrated that I couldn’t articulate it. These were seen as threats. When I was put in a scary situation, I would flail and push to try to get out of it — and these were seen as violence. When she left on trips, I was taken with her because she was worried what would happen if I was left with a babysitter.

Most of the episodes she chronicled for her private memory keeping were ones that she never saw the cause for. So many start with, “I came home from work, and Savannah…” It took me until into my twenties to be able to articulate what happened before — that her second husband had provoked responses and behaviors. How he would tell me I was fat, lazy, and that I would never be competent. How he would threaten me with sending me away.  How he did any one of a number of things that would set off my behaviors. There’s no coincidence that the behaviors dramatically decreased a year after he left- at 14, I even was off medication.

Not all the behaviors were triggered by him — some of them were reactions that I didn’t know how to handle internally. Some of them were because of how my internal state from incorrect prescriptions made things harder to deal with. Some of them were from being unable to handle fear, frustration, and change internally. Change was a big trigger for me, and set off the start of my fear responses. I just didn’t have the skills to handle those states. I would go on to develop them, but I didn’t have them yet.

For me, those times were scary because of the outside world, because of confusion at people’s responses, and because of people using my being a “scary kid” as a weapon. To her, I was scary and she didn’t know and couldn’t predict fully why. She understands it now — time, observation of me growing up and learning, my finally being able to properly articulate what was happening for me in those times.

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary.

It’s not scary in and of itself. What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

I’ve had people try to justify things from the JRC’s electric shocks to denying someone an integrated learning environment, to defend seclusion/restraint to “therapy” induced injuries and even deaths using my fellow former scary kids as their reasons. The kids with “significant disabilities.” The ways that other people saw my behaviors — things I didn’t know at the time- are the same things I hear from people trying to justify violence and isolation towards kids and adults with disabilities.

They also project forward to futures that are inaccurate, contributing to the problems that us scary kids face when we grow up. They say we will become criminals, or will commit violent crime, that we will be a danger to society. That we are “sleeper agents” of mass murder. They say that of course people who have had such and such a diagnosis, especially when you are also a scary kid, will do certain things or will never do other things. That we couldn’t successfully ever live on our own, that we’ll never graduate, never hold a job for long, will never have successful, healthy relationships. That we are doomed. And while not all scary kids have mental health disabilities (and not all kids with MHDs are scary kids), those who have developmental disorders with the right behaviors are lumped in.

When I- and others who are autistic, have Mental Health Disabilities, or both — talk back with truth, we are denied. When we talk about how having xyz diagnosis doesn’t mean we will do stuff, when we point out that we aren’t mass murderers, we are shut down. When we talk about how yes, mental health reform is important but that it shouldn’t come out of stigma, coercion  and false equivalence, we are told that we are calling other scary kids lost causes. When we point out that we don’t have enough information, we are dismissed. When we disclose, we are called too close to the issue. Even when our mothers join us.

In reality, only 5% — or 1 in 20 — of those in jail for violent offenses entered jail with a diagnosable condition. The other 95% did not present as diagnosable on entry. Most of those with diagnosable conditions are there on non-violent and drug offenses, including a number of which are a symptom of a lack of supports rather than their conditions themselves. Some estimates place the rate of Mental Illness at 50% of the inmate population, and yet only a very small percentage are there for violent crimes.

In reality, these impressions of us make us targets of crimes. People with “Serious Mental Illnesses” are more than twice as likely to be a victim of a violent crime. We are targeted for sexual assault, particularly if we are or are seen as women. We are likely to feel stuck in abusive relationships, or to have people use our diagnostic status as justification for abuse. And that is just the violent crimes  — we are astronomically more likely to be victims of personal theft, and 4 times more likely to be victims of property theft.

In reality, the stigma and stereotypes that people are promoting mean discrimination in employment, in housing, even in healthcare and courts. It means having people turning their backs on friendships and relationships when they find out, even if you are relatively stable now, even if you have the supports that make it irrelevant. It means people leaving if you have a setback that they would stand by someone without your diagnostic history for.

It is facing stigma, or hiding from it, sometimes at great cost. I certainly made a lot of poor choices based on trying to hide having been a scary kid, even when I wasn’t hiding having Mental Health Disabilities.

Being a Scary Kid isn’t certain doom.

They told my mother and I that I would never graduate high school and I’d never get into college. Some speculated I’d need to live in a group home or a more intense, and that I’d never live on my own. Some thought I’d get sucked into crime based on my psych history alone. Some said I’d off myself before I turned 18, 21, or 25.

I graduated high school — my siblings, the non-scary kids, dropped out and either have or are working on their GEDs. I even aced a number of classes, and other than my last semester (which was sucked up in depression) was pretty much tops. I’ve had some unsuccessful attempts to live on my own in the past, but those had to do with daily living skills more than being scary. Right now I’m living relatively successfully on my own, even if it did follow a period of homelessness. I did get into college easily, even if I had to drop out for a mix of financial and ADL deficit reasons. I’ve never been in jail.

I celebrated my 25th birthday in August. I am alive, and though my health isn’t the best I am surviving and working towards my own personal wellness.

I have little in common with the things they assumed. My scary is now just the normal stigma that any of us, autistic, with mental health disabilities, or both, face. I do struggle, but not in the ways that were assumed when I was a scary kid.

Being a scary kid is just that — having behaviors that scare people when you are a kid. It doesn’t mean you have a particular diagnosis or neurotype. It isn’t predictive of being a mass murderer or anything else- heck, a lot of the people who are mass murderers, diagnosed with something or not, didn’t reach the heights of being “scary kids” when they were younger. Not scary the way I was, or others were.

When I point out to try not to link scary kids to criminal violence, particularly of the mass murder sort, I’m not saying that services and supports aren’t needed. I’m saying that they would be even if we never had a massive violent event. I’m saying none of us are doomed, if only we combat stigma and prejudice at every chance, be it ableism, racism, or classism that we are talking about.

When I tell you no, I mean that none of us are lost causes.

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.

Payment

[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.

On Childish Things II: Harry Potter, Reclamation, and Finding Community

All of us have moments in our childhood where we come alive for the first time. And we go back to those moments and think, ‘This is when I became myself.‘” – Rita Dove

This is part two of a two part post. You can read these separately, but this post will make more sense if you’ve read On Childish Things I first. 

[Content Warnings: mentions of Abuse, ableism, denigration of “childish” behaviors”, sibling’s internalization of abuse/ableism]

The year that Rick left was the same year that I read the Harry Potter books. At first I had been reluctant to even read them for the same reasons I had avoided other fantasies people my age were reading. But then I read Prisoner of Azkaban.

I hadn’t sought it out. My cousins from New York were visiting and my Aunt Lisa over heard me complaining that I was bored and wanted something new to read. She went to her van and dug out one of her son’s books and handed it to me. I think the most effective way to explain what happened is to say Collin never got his copy of PoA back. (Cousin, I owe you a copy if you ever read this.)

Within a few months, everything in my life became about Harry Potter. It was mostly internally, as we were too poor to afford any merchandise. But every moment, every safe hold, was wrapped up in this special interest that was blossoming within me. I dreamed of leaving Rick and therapy and censure behind, to go to a school- not a magical school, I knew that wasn’t real- where I would have to stay in a dorm, as safe from it all as Harry seemed to be from his Aunt and Uncle. Indeed the moment when I truely came to love the SCA was when, during my first Pennsic, the only comments I got to sitting to read in a public thoroughfare were comments from adults asking me like an equal how I liked the latest book.

Rick finally left that fall- and we got internet for the first time. My struggles with being around others my age had developed to a point where, combined with behaviors at home, the choices were a residential placement or the newly emerging cyber school programs. We chose cyber school. That first year of internet was covered through that, though I learned more from my “recreational” time than I had from the official curriculum. Searching for more things on Harry Potter, I found the Fandom community.

I don’t know how many of you are familiar with Fandom. I think of it a bit by taking apart the word parts. Like in a kingdom, all things were centered on what the thing we were fans of in place of a king’s will. It’s like a community where a shared interest- or, not uncommonly it seems, special interest- is where everything is funneled through. I learned so much there- how to have friends, how to maintain coversation, even how to write and articulate my thoughts and feelings beyond inept, purely practical communication.

Being a part of this community was just as “magical” as Hogwarts itself. The elusive concepts of community and fellowship that I saw others have little trouble with became real things. Connection to others suddenly had a real value. I could go on, I think, for a long time about how Fandom changed me, gave me elusive skills, and even healed some parts of me that abuse and mistreatment had damaged. (Indeed, Fandom and the vast joy it gave me allowed me for the first time since early childhood to reclaim that oft repressed joy of flapping.) But Fandom’s healing powers has only a tangiantal connection to what this post is about.

Until after I graduated high school, Harry Potter and its fandom were my primary interest. I ate, slept, and breathed it, I did my homework at school instead of reading in my down time there so that I would have more time for it at home. I excelled in it. When I finally returned to public school after a year at the cheapest private school in my area- an evangelical school- I had a focus that allowed me to ignore the other students for the most part. This focus on fandom and my fandom friends also allowed me to follow my mother’s advice of just trying to be painfully nice to others, which meant I did eventually gain a limited number of friends.

At the same time, though, the other things that I had avoided continued to be things to avoid. While some of the other fans my age were also into books like Animorphs, I secretly looked down on them. (I now recognize how horrible this is, and wish to appologize to my friends who I secretly held this interest against.) Though my brother’s skill at video games and my own enjoyment of RPGs existed, I tried to focus on more mature stories ranging from the Final Fantasy series to fairly- though not explicitly- adult themed tabletop gaming. Other stories were terrifying to me because of the childish associations I had for them. Indeed, though I did play Pokémon in private when no one was around, I didn’t allow myself to talk about it. I didn’t allow myself to fix the names in my head of the various creatures and towns for fear of anyone actually knowing that I could enjoy it.

While my interest in Fan art and geekiness allowed me to gain an interest in the art and style of Anime, I couldn’t bring myself to enjoy any of the stuff marketed to teen aged girls. Indeed, even though a distant cousin of mine shared an interest in anime I couldn’t deal with being around her for very long, as her love of Sailor Moon left me conflicted and a little scared. It was firmly, to my mind, in that realm of childish things. Even though my primary tormentor was gone, the fear of being seen as a child and as incompetant remained.

The effects of how Rick used this to divide my siblings and I remained too. My brother was 16 and I 17 when he decided he couldn’t handle living with me anymore. My behavior at home, though much better, could be set off by taking away my special interest. I was using up my energy and self control at school and in public, and couldn’t handle being parted from my interest for most things that my brother saw as “normal.” Honestly, I don’t know to this day what he thought would be better or more normal. I have no idea what else someone with very few friends- most of whom I didn’t do anything with outside of school or organized activities until the end of my Senior year- was supposed to be doing. I did know that I had something that brought me joy, and that taking it away brought me distress.

Having internalized the idea that I would never be mature or competant, my brother couldn’t take it any longer and moved in with the family of one of his friends. Though he is not as avoidant of me as he once was, he never lost the idea of me as incompetant. The idea that I would never be competant to fully understand things never left him. To this day, I do not feel safe holding any opinions when I am around him. I am not skilled enough or fast enough with putting things into words to defend my opinions, and when I become frustrated he brings up that I’m too emotional, stupid, or even incapable of understanding things to hold a proper opinion. Indeed, even those times I have prepared myself he will point out that in his opinion since I’m Autistic, what I have learned about social dynamics, politics, and even social justice are invalid or just not true. That my reasoning automatically must be immature and incomplete. I my mind, he has assumed the role of Rick’s enforcer, even if he doesn’t mean to.

Before Will left, my sister had her accident. Her own judgement centers had been damaged by her Traumatic Brain Injury, and this left her with following impulses. Unfortunately, this meant that I lived through a period of several years where she took advantage of how easily upset I was. However, she had been too young to have the full force of Rick’s influence and she eventually matured. At first, she still thought my uneven skills meant I was being stubborn or lazy. After my niece was born, though, she dated a young man who had 4 step siblings who were all somewhere on the Spectrum. Seeing that wide display of what Autism could be, her approach towards me changed. I’d never say she treats me perfectly, because she’s still herself- a proud bitch by her own labling. (I only use this word for her because it is how she describes her self when she’s short tempered.) But she treats me as an Equal in a way that accomedates for what I do need accomedated for. When I need her help, she no longer holds it against me. While she is still hard on me, it is more of pushing me in my skills than accusing me of anything. She treats me as much as an equal now as she treats anyone, really.

Years have gone by. I’m 24 as I write this; it has been more than 11 years since Rick left. While I hope, I doubt that I will ever reach the day where the things he left behind in my head are ever completely gone. Afterall, milder forms of what he has said are riddled throughout our society. Careless ableism, paternalism, and fixation on the pitiable and perpetual child with disabilities are unfortunately a deeply ingrained thing for the West. But I take hope, I think, from the little buddings of Autistic Community Building. It’s not just the community itself, of course- community alone is something I could seek out in fandom- but a community that recognizes and reclaims the things we’ve been told to hide.

Some of my friends haven’t felt forced to give up childish joys. I wish I were one of them, but I am not. In spending time with my community, particularly members my own age range, I am surrounded by reminders of what I had forsworn, of joy. But for me, reclaiming this part of who I am is harder than reclaiming the joy and releasing the shame of stimming. Rocking and flapping in public is no where near as terrifying for me as openly taking joy in childish things.

I wish I had a better way to word all this. To uncover all the parts of that terror. In fact as I type this, my throat is tightening with anxiety. If I reclaim my childish joy, a part of me thinks, am I affirming that idea of being stuck a child? Am I admitting to being that child in an adult body that is bandied about with pity? Do I become not an adult with their own interests but a child stuck on the past?

I know that these things aren’t true. I no longer feel shame for or superior to my friends who continue to take joy in Muppets or My Little Pony. I no longer avoid conversations where my partners linger on Pokémon or Sailor Moon (which it turns out is pretty cool.) I’m slowly taking steps to explore those things that I had discarded in fear.

But my doubt in myself lingers, and I find it so hard to join in joy easily, myself so out of practice at the words and flow for these sparks of childhood that I mumble or stay silent. I have to tell my dearest friends aloud that I do enjoy listening to them talk, and to pardon my silence because it’s too scary, my toungue too trembling, to join in their words. I beg of them to indulge and keep talking, because I still love some of these things but am not yet past my fear enough to speak that love aloud.

A friend recently was talking to me about the new Muppet movie and their excitment over it. Eventually they took notice, though, that I only hummed along to their singing and smiled and nodded to their reiterations of facts. Like many members of our community, they had been taught that a shortcut to figuring out if someone isn’t as interested in a conversation is if they do the smile and nod. Trying to explain this whole thing to them was difficult- they had never been made to feel as I had. Eventually I just told them I’d be writing this post, and we continued on walking.

A block later, I mentioned having enjoyed the muppet babies cartoon when I was very little, and how I had liked the peanut butter and bananas sandwiches that one character had been fond of. It was a short sentance, but it was something. Some sort of tiny step forward.

This week, I have plans to try and see the new Muppet movie. I don’t know that it will happen- my mother is a bit unreliable for recreational plans- but it is a plan.

My three-year-old niece, too, has been a catalyst in re-examining these things. Last week, my niece and I started watching a children’s show called Ruby Gloom. The day after she left, I was still at my mother’s. I turned on the Xbox, and I sat down and watched an episode, just for the Joy of it.

Progress is slow, but it’s never too late to make a little more.

It is never too late to have a happy childhood” – Tom Robbins

This post is dedicated to my best friend. Their interest in things I had put away initiated my thoughts, and their joy made me re-explore my own shame.

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.