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.

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The Horror in the Asylum Walls

There’s a lot of really good critiques of the asylum horror trope. They are very legitimate, especially within the context of the typical mind and the societal approach to the “mad and mentally infirm.”  The general consensus seems to be that they rely on the idea that the horror stems from being “in there with THEM,” where “them” is the disabled other.

For me, I’m drawn to them and feel the horror in them for a different reason. For me it’s nothing about being in there with a disabled them. I already AM the disabled them, the one that was called dangerous and segregated out. I kicked, screamed, and clawed my way out of that segregation, but I’ve carried that along on my back since childhood. They are not an other to me- they are family, and not the kind that holds you down for your own good.

For me, the horror and the fixation, the draw, comes instead from the individual realizing the truth of what we do to people like me.  Our protagonists are being subject to these things, things that are really things that I can be afraid of or have faced. It is a real horror, and one that permeates my fears already. It is terrifying to have your life and freedom held, controlled, by people who refuse to see you as a full human. It is terrifying to have people give you medications you don’t understand “or else.” It is terrifying to try to escape those making you feel unsafe only to have it end in restraint. It is terrifying to have people act as though the terror your experiences have told you is warranted is “just” in your head. It is terrifying to go to demand your rights and have the doctor add it as a symptom in your chart rather than a violation.

Witnessing that, to me, is terrifying, similar to watching a dramatization of a real serial killer case. It is a real thing that really could have happened to me. I could have been locked away- my mother was certainly told to do so enough times. I could have had to fight for years instead of weeks or months. It’s a gut deep fear.

My mother didn’t lock me up. She fought hard to keep me in the community. But that doesn’t mean that the fear doesn’t lurk in my nightmares. You have that hanging over you for years and that fear nests there.

I do a lot of peer education work around self advocacy skill building, including sharing with people living in thestate institutions in my state. One time I was visiting one of them in order to present. The institution had a cottage on campus that was set aside for families from a distance away visiting their kid or other relative. (The building for families? Not wheelchair accessible. I guess they just never expected a family member to be using a wheelchair to just visit.) The institution offered it to use, to cut costs of hotels for our group. We got into the rooms and I melted down. As much as I knew that I wasn’t there to be locked up, the lurking terror from my childhood came to me and wouldn’t go away. I had no way to sooth them there. The room was hot enough to disturb my sensory stuff and didn’t allow for the room to be chilled to calm me. The blankets were wrong. The room itself had that old school nursing home feel. And no, there wasn’t any internet to drown it all out, either.

Eventually the project staff had to last minute order a hotel room and drive me to it off campus after her normal bed time. She was fine doing so, and we never agreed to stay there again. I still day trip to the institutions for peer education, and I’m fine doing those so long as we are off the campus by dark. It’s similar with other institutional settings- nursing homes, mental health facilities, even transitional housing. When I was homeless, I spent one night in transitional housing and hit the point where I would have rather lived under a bridge. I ran away and a friend of mine (actually the same project staff) came and had me stay at her home. (The fact that the nursing staff there thought Passover observations were a sign of a latent eating disorder didn’t help.)

So when a horror movie lays bare the reality of institutions and being disabled in those environments, I both shiver at the treatment and thrill that the polite skirting that normally hides what could be my reality is lifted. My favorites, of course, are when the current or ghostly patients are the key to the protagonist’s escape- when trusting a “fellow” inmate is the way out of the man made hell.

And it is man made, even when the protagonist is encountering the supernatural. Frequently it is not the existence of the “mad” alone is not enough to fully fulfill this sort of story. It is the suffering they were inflicted with in the asylum. Similar to the typical haunted house story, where domestic violence and murder-suicide are the frequent suffering to create ghosts, the narrative of the haunted asylum allows us to reveal and name rightly the horror of abuse within societal structures. It becomes satisfying to the viewer, then, when the evil doctor is killed, or conquered, over the course of the narrative, just as the exorcism of the abuser-spirit delivers relief in the haunted house narrative.

I understand that this is not how most people, disability activists to utterly abled and NT, experience these narratives. I accept that, I don’t mean any of this to dispute those experiences or the legitimacy that the typical disability critique has. I even accept that we NEED those critiques, desperately, as the normative readings of these works does not match my own and can create harm unchecked. But I have had this experience of these texts- an experience that posits how we treat people with certain disabilities is the horror, not the PwD themselves- and it has troubled me for a long time that I haven’t heard many others that take this approach. Perhaps it is because of “Autistic Perspective Taking” reasons, especially in how long it took me to accept that the other view is more common, but I have to state the existence of my experience in this genre.

Parents

We are running up on the 2015 Disability Day of Mourning vigils (aka Day of Mourning 2015: Remembering People with Disabilities Murdered by Caregivers on March 1st) and it has me thinking about parents. Or more specifically, how parents react to the autistic and broader disability communities.

I kept asking people to consider hosting vigils, and too often there was push back that they were concerned that the parents in their community or the parents of their group members would fight it. Which I want to say puzzles me, but that isn’t quite right. I know what is happening here, it happens elsewhere too, but it still seems like nonsense.

First let us start off with this: Unless you’ve murdered or tried to murder your child, or actively fantasize about murdering your child, this isn’t about you. This event? Is not talking about all parents as some sort of blanket entity. It is acknowledging that while hopefully you, my reader, are not going to kill your kid or charge, there are people who do, and that that is wrong. I, and the disability community, want you to join us in saying “it is wrong to kill your kids. Period. Disability is no excuse, lack of services is no excuse. It is wrong.”

Saying that it isn’t okay to kill your kids isn’t about you, as a good parent. It isn’t, I promise! But it is important for you to join in on. You can’t tell, and we can’t tell, merely by looking that the parent next to you is also a good parent. The children who have survived can tell you that. The people who outlived a loved one who didn’t can too. So it is important to make sure that you are telling all parents, good and bad, this very simple thing- that disability status isn’t an excuse for murder. That murder is bad. It might feel too basic, but the cases we’ve heard of over the past several years show that when it comes to this issue it clearly isn’t. There’s still enough sympathy, enough rhetoric, that makes some people think it’s the better choice.

But the vigils for murder victims aren’t the only place I’m running into this issue. I do a lot of policy work. I have a deep love hate relationship with doing policy work, though part of the hate if I’m honest has to do with most of it currently requiring a minimum of a 5 hour drive each way. At some of these meetings parents come in and say some very reasonable things… but then are shocked when I add something that would put protections for their child from them. And every time, I have to tell them “I trust that you are a good parent. I trust that you have your child’s independence, safety, and access to community at heart. But not all parents are good. We have to make sure that their children are also protected.”

Some of them still will be upset. They really want, I think, to believe that if there was just the right services out there that all parents would think like them. I admit, that would be easier. But it’s not true. You can insert your token “and they say we don’t have theory of mind” joke here if you must. But there are parents who have done deeply horrific things to their disabled children, ending in their deaths.

But that’s just the more extreme horrors. I’ve also met people whose parents have told them, all the way up to age 40+, that they are not allowed to vote. In my state, that is not true- you can still vote in PA even if you are under guardianship. I’ve met people who have been told that if they move into a more independent situation, they will either be abused, or subject to more abuse. I know people who were abused before they went into a placement, and whose care givers hold that over their heads as something that will happen if they try again any time they ask for more independence. There are endless ways that a person can let their goodness fade away and reduce their loved one, to aim not for a better life but for one that is easier for the family or caregiver to manage.

And there’s contributing factors as to why these things happen. We have a lot of rhetoric that embraces the idea of people with disabilities being burdens. Sometimes there is explicit wording about our financial cost to our families, and sometimes it is more about all that time. When I was looking around for links on the Tutko case, I had to discard some of them because of how hard they framed things in that first week as being a case of the mother giving up family life to “care” for their kids. That was a deeply horrific case, one that later had that tone stripped as the neglect was extensive and the way that her rejection of help was tied to a history of child protective services was revealed. But it was still the default, and that is concerning. That is how deeply that burden rhetoric has permeated.

Again, I trust that you reading this are good people, good parents. Some might even say that’s too trusting, but I’m going to trust you anyhow. I’m going to trust that when you talk to your kids, you are letting them know it’s not okay for anyone to harm them or to kill them. That you fight for and with them, but listen to them in whatever way they communicate. That you let them know that they are loved, period, and that that love is about them, not about anything else.

And I’m going to ask you to not fight against us, to not be defensive, but instead to stand with us when we say, “no, it’s not okay.”

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.

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.

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.