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.

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.”

I’m not a side story

… But going by the stories out there, you’d never know it.

A few months ago, I had a dream. There was buddies and lovers and hijinx and fabulous clothes and lots of fun. Sounds like a pretty cool dream, right? Except when I woke up, I realized it was a nightmare.  For having seen all these fabulous things happening in my dream, when I woke up I came to the realization that it was not my narrative arc that the dream was following. I was a side character in it- a part so small I barely had a name in it, a character so minor that even in a romance novel series that pairs a couple up per book, my character wouldn’t have a book. I was the character who existed only in order to give reactions to the actions of the character the narrative followed, more object than person, more context than character. When I woke up, I sobbed silently into my pillow for more than an hour in the pre-dawn morning.

The framework this nightmare was built on didn’t blossom up from my mind alone. It grew out of a lifetime of the media we, as a society, consume seeding itself there. Very rarely are stories- particularly love stories- the stories of disabled folks living their lives. Too often when they are, they become pity fests, or the disabled love interest exists primarily to teach the non-disabled love interest a lesson about life. (And primarily these are still white, hetrosexual relationships.)

Living without seeing your reflection in media is hard. Trying to picture what it would be like to marry, or parent, when there’s so little media to help us think about those things realistically is hard. It’s soul crushing. And it permeates past your conscious efforts, right into what’s inside of you. Eventually, hopes that look pretty normal seem like fantasy. You stop being able to picture yourself doing the things that you hoped for, which makes working towards them that much harder.

And it’s not like it’s easy to begin with. Beyond just the difficulty of life in general, when you are a person with a disability there are additional factors.

There’s a moment in your life when you are disabled- or trans, or queer, or a PoC or…- when you realize that in most of the media you consume the people who do actually seem like you aren’t there to be fully realized characters. You are the comic relief, or an instrument of change. You are the reason that the “real” characters learn to grow up, or take their first stand against an enemy. You aren’t the protagonist yourself.

When the story is over, the characters like you go unremarked or are carefully wrapped up and put back where they “belong.” This goes for Rain Man as much as for the recent Bones episode “Heiress on the Hill”- while they deal with different disabilities and were made more than two decades apart, both end with the surprise brother going back to the “nice” private institution where it is said that they “belong.” That Bones decided to do this, more than two decades and the Olmsted decision since Rain Man, broke my heart. I stuck with the show, but now… I’m too disgusted to go back. There are less restrictive settings for people with that level of MH support needs. I would know- I’ve helped write policy about them. And even if there weren’t, we could have seen Bones and Booth put money towards FUNDING the development of less restrictive settings instead of how it went down. I feel betrayed. I started watching the show because there weren’t many women like Bones on TV, women with a lot of autistic traits who uses her special interest to understand the world, and now… I can’t.

I’m not the only person who has talked about this, about finding characters who are like you, who move like you, who live like you. Who have talked about the first time they met themselves in literature or film. It can be empowering, and it can also be harrowing- empowering because representation matters, harrowing because too often it’s sterotypes, because when we grow up and look back we realize our relief clouded things, because it’s so hard to find.

*When I read Rainbow Rowell’s Fangirl, there was one thing that really suck with me about it, and that was the protagonist’s father. Too often, parents with mental health disabilities are displayed as incompetent at best, often pitiable and where not as villain. But here I felt like he was considered a good father by the protagonist- a man who might make some mistakes, yes, and one whose MHD impacts his life a lot, yes. But in the end he is a good father, and a good man. This was very powerful to me- when I was younger, I figured perhaps it would be best if I didn’t have children. I’d only seen bad things happen in the stories I saw or read about parents with MHDs, and assumed that it would be horrible for my kids. That the pattern I had at that time of going to the hospital every 2 years for a stay would stretch out forever, that my kids would end up bouncing in between me and my mother forever. I thought I should plan hard enough to not want kids, and tried to squash down any desire to.

*And then my niece was born, and I realized that I really do want to be a parent some day. Because of physical health issues there’s a chance I’ll need extra help to become a parent, but it is something I want. And it’s funny- I haven’t been in the hospital for MH stuff since before then, and she’s 5, and will be 6 in the fall. Along the way I had begun uprooting the ableism that was embedded in me, and continue to do so. So finally seeing a positive yet realistic depiction of someone with an MHD (aka Serious Mental Illness or SMI) being a loved parent- even if he’s one that needs help sometimes- was very affirmative for me.

*There’s still that his story was a side story, yes, and it wasn’t exactly a life full of romantic relationships for him. Which is why I want to talk about The Fault in Our Stars super quickly. (I know some people hate the author, but I don’t so I ask that you keep author critiques on your own pages thanks!) It’s a book that treats people whose lives are often seen as tragic and cut too short as being full people. That their lives are or are likely to be short doesn’t make their lives less meaningful or valuable or worth living. It doesn’t prevent them from having complex thoughts and feelings about their lives. And it doesn’t prevent them from falling in love and *gasp* having romantic relationships that include being sexual. That was really powerful for me, as it was for a lot of other people.

Atop a pile of boxed up books is a red sign with blue-ish text reading, "We need diverse books because without them, I have trouble being the protagonist of my own dreams." With sheep turning into "Zs" around it are a cane, a Fluttershy plushie, and a Dora doll

This week, there’s an effort called #WeNeedDiverseBooks going on. May 1st, they are putting out submitted pictures (mine is above) talking about why it’s important that marginalized people are represented in literature, especially in children’s and young adult books. May 2nd, there will be a twitter chat at 2pm under the hashtag #WeNeedDiverseBooks- though the tag has been active since at least April 28th so feel free to join any time. (I’m @nicocoer.) On May 3rd, there’s going to be an effort to have folks buy, request, and share books about marginalized people and by marginalized authors. (You can find more details in this post.) I encourage you to check it out and to submit to the efforts as well.

It was this effort that helped me finally finish this post after months of working on it. I’m sure I could write more on this. I’m sure I could write more on how impactful it can be. But there’s too much to do that and ever really feel like I’m finished. And it goes, obviously, beyond disability- as many of the others involved in #WeNeedDiverseBooks can and are testifying, there’s too few representations of PoC, of people who don’t fall in the peak of the size bell curve, of people whose faith is not Christian (in the USA at least), or of a wide range of other folks. And what representations there are too often suffer from the same, similar, or analogous issues to those described above.

And none of us- none of us, period- should see ourselves as sidekicks of our own stories.

______

It’s also, coincidentally, Blogging Against Disablism Day on May 1st. Please go forth and check out the other posts being entered.

*Edited in. Forgot I hadn’t written it yet, oops. ~Bad Brains Princess at work~!

 

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.

I Do Believe This Is…

Content: Mentions of violence against people on the basis of ability, race, and so on; Mention of abuse.

Friday, March 1, is the 2013 Day of mourning for those PwD whose lives were lost to the hands of their caregivers. Last year, it was at the end of March, not the beginning, which means it’s not quite the anniversary of knowing one of my abusers/caregivers is dead. Last year, those two things fell on the same day. I felt shock and relief mixed into my grief. The shock predominated throughout most of that afternoon.

It’s been a year and a month since Stephon Watts was killed, by police who his family was told to contact for “help,” for the combination of being an Autistic young black male. 11 months since Daniel Corby’s murder. This fall it will have been 20 years since Tracy Latimer’s murder. A month and a half since Robert Saylor’s murder. Almost 80 years since the Nazi’s T4 program. I can post lists and timescales forever, it seems, and it still won’t have all the names it should.

Our dead are mixed in with the dead of others in places where our identities cross, these cross sections boosting statistical probabilities. Stephon’s murder was just as much (if not more so) a factor of racism as disability. T4 blended in to a larger propagandistic and genocidal engine.

There are sadly always many for which to mourn.

This year, we’ve seen violent events, events which have gotten the attention of major news outlets and the dwellings on of news cycles. In these ways, it is unlike our dead- though our dead are hidden in theirs. Instead of joining in mourning, the public uses these deaths as a means to fuel the same bigotries which lay behind the excusing of our deaths and pardoning of our murderers.

Recently, some noticed something terrible, something demonstrating the way in which a certain segment of the disabled population is viewed, when they googled “Autistics should”  and “Autistics are.” Google uses everyone’s searches to guess what your next words will be. Based on the searches in their database, google suggested things like “Die” and “dangerous” to complete the search.

A flashblog (see both “should” and “are“) appears to be bearing some results* in amending the computer side of this, but Google only has the ability to amend what their searches suggest. They can’t amend a code and instantly remove the biases that lead to those searches in the first place. (Though it does help.) Erasing bias a is longer, and more complicated, process than that. A process which is on all of us to work on.

A process that we all need to keep in mind. Bigotry that cannot be forgotten, as it blooms fresh again.

My words here are not as direct as I’d like. I see that my sentences are convoluted, but every time I fixate on them enough to begin translating them out from the word pictures in my head into plain language I feel those things that indicate I’m about to cry. It’s hard not to, when you allow yourself to really have the reality sink in. Terror, relief, grief, anger, sadness, and the sense of ever reaching, all inter-playing and weaving.

Yes, I do believe I’m mourning.

______________

This year’s vigils are being jointly backed by ASAN, Not Dead Yet, and the National Council on Independent Living. You can find the nearest vigil to you on the ASAN website, and I’m (as an ASAN person) managing the virtual vigil 3:30pm EST-Midnight-ish, with a good friend, That Crazy Crippled Chick, as my second.** This is a cross disability effort; Autistics are not the only PwD to be murdered by those who were supposed to protect us.

* The article in the link is titled in a way that suggests that this change is already in effect. This is inaccurate; as of this writing, Google has agreed to modify their algorithms to eliminate this issue. It has not been implemented  in a way that impacts the user end experience as of yet.

** Or number one, if I’m Picard and she’s my Riker.

Messy

I don’t think it is a uniquely Autistic trait to desire things be cut and dry, for the lines and sides to be clearly defined, for things to be clearly explained. Perhaps the intensity with which we cling to it can be, and thus the frustration and bewilderment some of us have when it turns out not to be the case being so heightened. I disagree with calling it black and white thinking, because I think that negates the fact that complex mechanisms can be clearly defined if you know well enough what you are talking about.

I think instead it is one of the human things to various degrees. Obviously, not all humans feel this pull the same amount. But it is safe. While there are some people who engage in risk-seeking behavior, for many that I’ve communicated with deliberate risk seeking is about facing or even fighting off the fear that safety makes feel inevitable. When you retreat entirely into safety, everything outside of it can become frightening, unpredictable, a risk. Sometimes I do have to ask, though, if it’s truly risk-seeking, or if it is a form of fear-avoidance.

I went through a phase the year I graduated High School where I wanted to be something I wasn’t. While others might not gauge the risks I took to be the same as “risk-seeking”, it was the same mental process. But it was on the scale of who I am and how small a safety zone I have inside me. It was terrifying and running on adrenaline and “proving” that it was something I could do. It was mildly self destructive, and I had my first major agoraphobic episode the following year. I spent 6 months only able to leave the lot the little house I lived in with direct supervision, to places I knew were both known and safe– my mother’s and doctor offices. And my mother’s was once a month and only because my then Roommate/boy friend had to return to our home town for National Guard drills.

Our stories and feelings are all messy, complex. And as much as I believe complex things can be explained, broken down into the tiny moving parts like clockwork bits, there are things which defy it. I want desperately to believe in a unifying theory, much like Einstein to whom the quote “If you can’t explain it simply, you don’t understand it well enough.” is commonly attributed. But some things aren’t predictable, are running on quantum mechanics, are inherently uncertain. Sometimes there are factors other than not understanding something (communication disorders included!) that make the totality of our circumstances and world more than what some people can explain simply. Perhaps another person could, but when it comes to the experiences rather than the facts? Things are incredibly messy, and the end of our narratives uncertain.

Einstein tried to find the Unified Field Theory until his death, becoming more and more isolated from contemporary physics work. It remains one of the unsolved physics problems. There is a lot of hope to someday reach that, and one of the reasons why people seem so excited about the Higgs-Boson particle is that if it is more than to be expected perhaps someday it could lead there. I have hope that someday I’ll have the words to tell my own stories in simple terms, and that each attempt will lead to more than to be expected.

I have a post in my drafts about Physical Therapy, about body awareness, and about changing over time and what that has meant. I couldn’t continue writing it, though, because it became messy. I started out going straight forward about the things that I’ve perceived differently but generally beneficially about my body in space. But then I was hit with a flare in my joint pain– and the only different thing that had been added was that I had started a Tai Chi class modified for people with issues similar to mine. I had done this to work further on body awareness and my sense of self and movement in space. I ended up spending the next day in bed, and the next several days in a lot of pain.

It is an inherently messy thing, this shift in both knowledge and perception. It came from something that seemed to have a lesser risk than other things I’ve done, and it was unknowable until it happened. Indeed, until afterwards when my body had settled down from the endorphins enough to be aware of the consequences. It’s a reminder of the uncertainty of everything, that we cannot predict everything, as much as even Einstein wanted us to.

When I wanted to be someone else, and even before that, my feelings around disability were messy and striving. While I embraced that I am “crazy”, a person with significant mental health issues, I avoided desperately the other parts of my being that were disabled. I clung to intellect, avoided and denied many of the conversations about my possibly having a developmental disability, swore that I no longer struggled with the same issues that delayed my ability to read by years, avoided the discussion of my experiences of selective mutism. I tried desperately to be “just” crazy, just a manic pixie girl (I never fit the dream part), to suit a limited sphere of what I thought was safe to be.

There are things that I said and sometimes even believed then that I hate myself for today. Eugenics, something I am now fiercely, passionately against seemed somehow a differentiation then, something to prove I wasn’t a “them” with. I used the R word profusely, partially out of habit and partially to distance myself from the times I had been called that as a child. I clung to academic achievements not only because it was something in an environment that I could achieve in, but that I hoped it would contradict the times I had been told my worthlessness. Towards the end of that period of my life I started to see the things I had talent in as simply talents, but before that it was the way to prove myself, to tell people I was not what they wanted to predict of me.

My past is hideously messy. The things I did well, the skills I learned, are overshadowed in my mind by this– how much I didn’t want to be me, and how much I was guided by a desire to deny half the things that form my experiences. It’s horrible, and messy, and confronting that is hard. I know that much of it was ableism, internalized and let to fester, but I still hate that that is a part of my past. That I could have been that person, and to be the person I am now. To desire the ambition and impetuous while despising the things that surrounded and directed it.

It is messy, and it is uncomfortable. It is also true.

_____

I am a layperson when it comes to physics. I’m sure I’ve over simplified or mis-connected some physics bits. But they are the simplifications and mis-connections that best analogize the emotions I have right now about this topic. If you want actual physics awesomeness, I do rec that you check out Minute Physics on Youtube. (Note: I don’t think they are captioned, though I do believe that their production team would be open to use captions that people produce, as time and budget are the big barriers.)

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.