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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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 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.

There Are No Words.

I wish I could say something new about George Hodgins.

I wish there were words to really express
what a tragedy his death is,
and the deaths of other Autistics,
other People with Disabilities.

There aren’t words.

Just as there aren’t words to express
what horror and tragedy
the Murder of Trayvon Martin
Who was Black, but not Autistic
or of Stephon Watts, who was black
and Autistic and scared, holding a
butter knife, or the murder of
Ernest Vassell last fall for
holding a toy gun while Black
and Autistic. (Or the arrests
of Neli Latson, and of his mother
for calling people on racism.)
This is what has been done to
Young Black Men in this country.
To Young Black PwD.

There aren’t words.

There aren’t words for
the horror of  baby Rylan
Rochester
, age 6 months,
whose mother thought he
might be Autistic after working
At a hospital serving Autistics
and so she smothered him.

There can’t be words.

There can’t be words for
The grief, anger, and fear
of living in a world where
Hate, fear, bigotry, and
complex social mythologies
Let people make excuses
for murder. Lets them empower
Blais after her sentance, or
air Latimer’s vitrol while
blocking dissenting comments.

All I can do is show you other words,
and hope they can be enough.

_____

In memory of George:

Kassiane at Radical Neurodivergence’s You keep killing us, and I am PISSED and The words said for George.

Autcast’s Why I No Longer Support the Autism Society of America

Lydia at Autistic Hoya’s Letter to the Parents of Autistic Children and Not human anymore – Is this what “ally” means?

Amanda at You Need A Cat’s Another murder. Please no.

Weird Law’s When perfection is deadly

Shannon Des Roches Rosa for BlogHer’s My Autistic Son’s Life: Not Less Valuable

Brenda at Mama Be Good’s Perpetuating the Stereotype: Autism, Parenting, & Murder

Other links of relevance:

Krip-Hop Nation’s Broken Bodies Pbp: Police Brutality & Profiling Mixtape and Where Is Hope? Documentary

In Memory of Stephon, Justice for Stephon Watts.

Not Dead Yet

Second Thoughts

Disability Rights Education and Defense Fund on Assisted Suicide

Please comment to add more links on these issues.

_____

March 30th and on, Vigils for People with Disabilities Murdered by Relatives and Caregivers are happening under the direction of ASAN. These are cross disability events. The current list of vigils is at the above link, and if you absolutely can’t find a way to get to a vigil in person, I’ll be hosting the virtual vigil via tiny chat for those who are in rural areas or are housebound. (After all we are people too, even when our disabilities keep us in our homes or we live in the country.) But please, try to get to or organize a vigil in person if at all possible!