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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Impact

[Content: mentions of murder, attempted murder, and ableism; internalized ableism; suicidal ideation]

This is a difficult post to write. It’s always difficult, of course, to touch on the subjects of murder and ableism, and on how they are excused. It’s more difficult to talk about the impacts in personal ways, ways that are your own lived responses and realities, rather than as abstracts. There’s a distance to the abstracts that keep you feeling safe, even though you know you aren’t. And this doesn’t even account for the risks that writing about those impacts can have on you personally. It is, plainly, all around difficult.

As a child and teen, I mainly just shrugged off these representations as I heard them. They may not have been as prevalent in the media I consumed, but they were, as they are today, “normal” things to hear. But just because something is de rigor doesn’t mean they are truly forgotten at all, even when they hold no special importance in the moment. Those words and memories are still in there, waiting for another train of thought to hook into them and pull them to the surface. It might be later that day or a decade away, but when you fish for something to carry you out of distress, sometimes you hook a poisonous fish instead.

A couple of months ago, I had a melt down that morphed quickly into a break down. I had spent the day cleaning and babysitting. I did have my mother around to help, which is why I was able to overcome my initiation problems, but this is still a major energy expenditure. By the time we got to the laundromat, my spoons were spent with several hours still left to go.  So when my niece put laundry in the wrong machine I snapped out “What are you doing” instead of a “That’s the wrong dryer honey.” She cried, and my mother responded with a “She’s still 4, you can’t expect her to know what to do.” And at that point the last spoons that I use to guard my thoughts was gone. I couldn’t stop crying, or saying horrible things about myself.

Instead of falling on the ground in a ball, as I sometimes do when I have a meltdown from spoon loss, I tried to latch on to something mentally to restrain myself from melting into a quivering mass on the floor in public. I needed to finish there instead of going home to melt in private, both because it’s less private there on cleaning days and because I didn’t have any more clean clothes. That was not a good situation, and pushed beyond the point that I could handle all I could reach were the “poisonous fish” in my attempts to keep afloat.

Aloud, I said things and used words about myself that I would never say in a normal state. I’ve reformatted my language so I don’t use the R-word, yet here I was calling myself one aloud in public. There was no filter left through which to moderate my speech, let alone my thoughts. As things escalated, the thoughts got worse even when the words got less specific. In that state, with nothing left to hold off the combination of anxiety and traumatic memory, my thoughts started regurgitating things I’ve heard in Tetris like reconfigurations.

Why didn’t they kill me when I was a kid and they could have some sympathy for it? Why would they keep such and expensive burden?  Why am I still alive?*

It’s a horrible set of thoughts to have. It isn’t about the sort of person my mother is- my mother is wonderful and doesn’t really understand how someone could intentionally kill their child with or without disabilities, and doesn’t even get why anyone was okay with the “I am Adam Lanza’s Mother” post. As much as much of my sense of worthlessness when I’m at a bad spot are an effect of the first two men she married, where my thoughts ended up going weren’t, as far as I can recall, a direct reference to my past.

It is, however, an internalization of the messages, responses, and dehumanization within our media. It’s every time a parent acts like having homicidal fantasies, masked in “mercy” language or not, about their disabled kid is “normal” or “natural,” every time telling them it isn’t is met with “you don’t know what it’s like.” It’s certain groups of people deciding it’s okay to lay blame at the hands of autistic adults for not giving up everything to put themselves between an autistic child and their would be/actual murderer- even when we’ve provided resources for those who are willing to listen. It’s every time the media calls reporting sympathy for the murder of the disabled making things “fair and balanced.”

These things are pervasive. And when something is culturally pervasive, it does become internalized. Even when you are someone that actively fights for cultural change, someone who can, if only in text, tell you exactly why and how oppressive structures damage people in our society. Even when you are someone who knows that the diversity of disability is evidence of humanity’s strength as a species.

If you think that these murders, or the way that our media talks about them, makes sense then I’m sorry- you are, as Beth said in her recent post, already at rock bottom. All I’m asking is that you don’t drag me and other people with disabilities down with you.

____

* Please don’t worry. I have support networks in place, I’m not actually in danger of attempting anything. I shouldn’t have to say this, but trust me I have family that will help me if I actually am at the point of needing to decide if the hospital is the right choice. And no, right now it is not. Thank you. 

I started this back in September(the “A Couple of months ago” was initially “a couple of days ago”), but it took me until today to feel like I had finished it. Originally I was going to link to writings on how media portrayals of this type of violence impacts how other people treat us, but was unable to work through it. Feel free to share links on the subject below.