Category Archives: issue

Involuntary hospitalization, a response

I was perusing youtube, as I do sometimes, and stumbled across a video in which a psychiatrist talks about his approach to involuntary hospitalization, and makes some generalities about how the mental health profession approaches involuntary hospitalization as a whole. 

To put it briefly, he claims that involuntary hospitalization is only used in extremely dire cases of suicidality. Cases where the patient has immediate risk, and it looks probable that things will change in a week so it’s really a matter of getting them through that week.

And I have FEELINGS about this. Strong enough FEELINGS that I want to write about it. Now, I am going to go ahead and assume that everything this psychiatrist said is totally true for him – but it is very much NOT true for the mental health profession as a whole. 

So I’m going to go ahead and talk some about my history. I have been involuntarily hospitalized three times in my life. One of those times was honestly justified, the other two were not. None of them actually helped me. 

The first time was when I was in middle school, and I didn’t yet have any real concept of needing to hide suicidal thoughts if someone directly asked about them. I was in a special ed program due to being “emotionally disturbed” and one day my special ed teacher sat me and another student down to just have a casual conversation with us. At some point in the conversation, the teacher oh-so-casually asked us if we had ever thought about suicide. We both answered in the affirmative. Then she asked if we’d ever thought about how we would accomplish it. The other student looked a little surprised at the idea and said that she had not. I, being entirely too naive, said that I had and happily launched into an extensive explanation of all the ways I had considered of how to unalive myself and the reasons I had rejected each possibility or kept it as an actual possibility.

Now, I can certainly see this freaking the teacher out. It’s probably alarming to hear! I could definitely see recommending therapy or something in response. To be clear – I didn’t have anything resembling a plan or any kind of intent to act on it, just thoughts that, while alarming, were not immediately dangerous. In any case, maybe a day later I found myself in a hospital for “suicidal thoughts.” 

The second time was in high school. This time I really had tried to unalive myself, so it’s hardly surprising that after my ER visit I was whisked off to a psychiatric hospital for a while there.

The third time was in college. I was depressed and self-injuring (which was nothing new, I had been doing that since elementary school). That was apparently enough to wind up locked away yet again

I consider myself extremely fortunate that none of my experiences caused me significant trauma. There are many people out there who are not so lucky. I still had to deal with doctors and nurses who openly did not care about the patients, some who even had open contempt for their patients, hearing care providers loudly mock me from just past an open door, plus the overall dehumanization that seems to be part and parcel of psychiatric hospitals. 

While I can see how one of my hospital stays was justified, absolutely none of them actually did me any good. They taught me better ways to hide my pain, the importance of not actually telling people when I’m not ok, and that there are limits to how much I can trust the people who are supposed to be taking care of me. 

I am in therapy now. I am genuinely happy with my therapy and I like my therapist. But I will never, ever tell him if I’m suicidal or pondering being unalive. I have actually thought about how nice it would be if I could ask for help when I’m feeling like that, but the reality is that it’s not worth the risk. Because I will NEVER go to a psychiatric hospital ever again. I am so serious about that. Never ever ever. 

When a mental health professional says that they only consider involuntary hospitalization in the most extreme of circumstances, the primary thing I hear is that they consider involuntary hospitalization sometimes. They consider it a valid tool and they will sometimes use it. Which means that when it comes to suicidality, I will continue to go it alone. This is even more true now that I am transitioning, as I would definitely not call psychiatric hospitals to be safe for trans people.

The comments section of the video has quite a few people with experiences similar to or worse than mine. I am clearly not alone here. And I’m saddened to see that the youtuber did not appear to respond to any of those comments. This is clearly a serious issue that mental health professionals NEED to address.

I do want to add a final note that while all of this is my truth and extremely serious for me, I do know that there are also people out there who have benefitted from psychiatric hospitalization. Their truth is theirs, and I don’t intend to invalidate it. Nor am I trying to influence anyone on what is right for them. Only to say what is right for me, and to point out that regardless of what is right for any given individual, there is clearly a systemic problem going on and it needs to be addressed.

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Body Language & Neurodiversity

Image is of a child with black hair wearing pink, chewing on a necklace. Text reads: “I look different when I listen / I may stare into space to focus on what I hear / Rocking or quietly fidgeting keeps me calm and focused / Sitting oddly may be more comfortable / A blank expression means I’m thinking / Biting a rubber toy is better than biting myself / If I disrupting others, please gently talk to me” All showing that neurodiverse body language can be different from neurotypical body language. Image from wikipedia, by Miss Luna Rose.

There’s this one youtube channel I watch called Observe. It’s a guy who is studying how to read body language, and he puts out videos where he analyzes body language of various people – sometimes it’s true crime, sometimes it’s other youtubers, sometimes it’s from “reality” TV; it’s a whole range of things. I happen to really like the guy – he is very honest about how interpreting body language is limited, it can never be perfectly accurate, etc. He explains those limitations in the beginning of all of his videos.

And in watching said videos, I have noticed that he seems to have a gap in his knowledge around how body language can be different in neurodivergent people. There have been multiple times where he’s made a comment about someone’s body language that really jumped out at me because I can see how his analysis is so different from my own lived experience and what I know from my friends who are also on the spectrum. So I wanted to talk some about that.

I do want to get some heavy disclaimers in here. First of all, none of this is meant to be criticism of Observe or his channel or his analyses of people. I think he’s great, I think his analyses are great, and I’m not inclined to say any of the videos he made that I will be commenting on are wrong – only that I can see how I (and possibly other neurodivergent people) are different from how he seems to think of things. Second of all – I am not a body language expert. I am not claiming to be at all. I am only an expert on myself and how I interact with the world. That is the direction I am coming from here.

ANYWAY. That’s enough preamble, let’s get to talking about some actual points.

He made a video about Mr. and Mrs. Philpott. I have no reason to believe the people in question are autistic or even neurodivergent, so I am not disagreeing with his analysis. I just want to talk about a point he made that really jumped out to me when I was watching the video. 

Mr. Observe says: “He starts off and he has a lot of halting, a very jilted timing to the flow of his words. He’s not speaking fluidly and he does have the ability to do that. This instance of having halt in your wording can be an indicator of psychological processing which could be an indicator of deceit. It would be considered a red flag in my book or according to the methodology of the university that I go to it would be called a point of interest.”

This downright jolted me. This is the first time in my life that I had EVER seen jilted timing of speech be tied to deceit. I can see now how that connection would be made, but it really startled me at the time. 

Here’s the thing – my speech can be incredibly jilted too. It isn’t always – I do have the ability to speak smoothly, but only if I already know what I’m going to say and have it all thought out and processed ahead of time. Otherwise? My speech is odd, my timing is jilted, there is no real flow to my words, etc. People I’m talking to have had, on a variety of occasions, difficulty telling when I’m done talking or when I’m just pausing. It does come from psychological processing, as Mr. Observe said. But for me, that psychological processing has nothing to do with deceit and everything to do with trying to translate what’s going on in my head into words, and then getting the words out of my mouth. Both of those things can be pretty challenging on their own, and when I’m trying to do it in real time, well, things get weird. But it does not, at all, mean that I’m lying.

I also talk in that weird cadence when I’m talking about anything emotionally fraught for me. Even if it is reasonably processed, it just never comes out smoothly. In order for me to talk smoothly when I’m having a lot of feelings in that moment I basically need to have it all scripted out ahead of time, and even then sometimes my cadence will be weird and my speech jilted. The point being – while the man in Mr. Observe’s video is known beyond all doubt to be lying, if I was actually for real in a situation in which a beloved family member was missing and/or dead, my speech would be just as jilted and strange as Mr. Philpott’s was. It’s scary to think that people may take me for a liar simply because my ability to speak smoothly comes and goes.

Again, just to reiterate this point yet again – I am not inclined to say that Mr. Observe was wrong in his analysis in this particular instance. Only that he drew a connection that is not at all safe to draw when, say, looking at a neurodivergent person. 

Onto another video by Mr. Observe! This one on Nikki Phillips & her husband Dan. (content warning if you’re following my links – this one talks about abuse of an animal and may be very hard to watch) Once again, he speaks of stilted body language and this time also about awkward body movements. He didn’t mention her baseline this time (a “baseline” being how a person’s body language normally looks, to compare against to see if anything odd pops up) so I can only assume he intended to say that those things were different from her typical body language.

Well, I’ve already gotten into stilted speech, so let’s talk about awkward body language. My body language can be pretty expletive awkward. I had to very consciously and deliberately learn how to express my body language in a way that neurotypicals understand. My facial expressions were (still are, though less so) things that I “put on” for other people to see. The emotion behind the expression was real, but the way I made it so that other people could see the emotion was very much not.

Doing that correctly is tough. For instance, Mr. Observe talks about facial expressions coming on suddenly, lasting too long, and then suddenly leaving, and how that’s a sign of deceit. Well, in the video in question I’m sure it was. For me, though, it’s quite different.

I can remember being a very young child and my mom explicitly teaching me how to grin, or do an open-mouth smile. Because I didn’t know how. Jumping ahead some 30 years – I can remember trying to figure out how to do facial expressions correctly, knowing that I was messing it up, but not knowing how to fix it. Once again talking about grinning – I would be in a social situation, and someone would say something funny. So I would laugh and put a grin on, because I knew that’s what you’re supposed to do. But… then what? Every time, the grin would last too long, I would realize that I probably shouldn’t be grinning anymore, so I would take it off. People generally gave me funny looks, but I genuinely didn’t know the correct way to do it. Eventually I learned that grins are supposed to be very short, but taper quickly off into a smaller smile that can itself taper off. LIGHT BULB MOMENT for me! Expressions taper! THAT’S why I didn’t look right! I was just putting them on and taking them off like a mask. No wonder people looked at me funny.

I have gotten much better at it now, but even so – my expression of emotions tends to be false, simply because my natural way of expressing myself is unsettling to neurotypicals. I flap, I make noises, I shake my head, I position my body in ways that NTs would (and do, when they see it) find weird. 

In this video, Mr. Observe also noted that when emotional displays are “off” people generally don’t feel an empathetic response. That was telling. If you’re autistic, you’ve probably had experiences of NTs really failing in having empathy for you (even while being told that you’re the one who lacks empathy, oh this is a touchy topic for me). Well, maybe this is why! We don’t “look right” and NTs don’t respond to that particularly well. 

Now, there was one part where Mr. Observe DID mention neurodivergent people, which I really appreciated. It involved one of the people being randomly distracted by a bird, and that may not be unusual in neurodivergent people but was unusual for that particular person. I really appreciate that nod to neurodiversity and how our behavior can be different from what’s “normal.” I only wish he did that more often.

Ok, one last video note before I get into some other things. In this one Mr. Observe was looking at clips from a reality TV show, this one centered on two people named Big Ed and Liz. At around 41:08 Mr. Observe notes that Big Eg was avoiding looking at Liz, and that this is an “indicator of possible shame.”

Interesting.

This is also connected to how autistic people tend to look away from people/avoid eye contact, and how that is seen as a sign of dishonesty. 

Well, personally I hate making eye contact and I am EXTREMELY uncomfortable looking directly at people. It is a thing I very much try to avoid if I can, but it has nothing to do with shame or dishonesty. In my case, it’s more about avoiding overload. SO MUCH of a person comes out of their face; it can be absolutely overwhelming. Also, and I’m not entirely sure why this is, looking directly at a person feels incredibly aggressive to me.

All this means that there are two instances in which I will look directly at a person. Most often it’s because I’m masking. Maybe I’m at a doctor’s office and I want to look as normal as possible – I will try very hard to make appropriate levels of eye contact and look directly at the person I’m talking to. The other typical instance is when I am actually feeling angry or aggressive. Based on how NTs react to this, it isn’t actually a glare in the way an NT might act. It’s just… looking at someone. But that, in and of itself, already feels incredibly aggressive to me, so why would I add anything to it? 

Now, in terms of Mr. Observe’s videos, all this probably doesn’t matter ALL that much, except for that he is trying to be an educational source and people are going to be watching his commentary without necessarily realizing how different things can be for neurodiverse people. And quite frankly, no one necessarily knows when they are interacting with an autistic or otherwise neurodivergent person. Not unless we tell them, or they already understand what they are looking at and what it means – which is not that many people. 

One place where this can REALLY start to matter is in interactions with police. Unfortunately, police can and do interpret autistic body language, mannerisms, and extra time needed for processing as being non-compliant or dishonest, and that puts autistic people at higher risk for police violence.

From the AELE Monthly Law Journal:

“Some autistic persons have difficulty making and maintaining eye contact with others. A police officer may mistakenly interpret this as “suspicious,” having something to hide, or defiance, when in reality it is not being able to or not knowing how to respond appropriately, or even fear from what, to many, would be a routine social encounter. The result has sometimes, unfortunately, been rapid escalation of the encounter, with ensuing injury or death.”

This is a very real thing for autistic people (and I feel the need to add in – black autistic people are at even greater risk, and that is absolutely horrible and tragic). The journal goes on to talk about a few specific instances of police violence towards autistic people, sometimes even after they had been informed that the individual in question is autistic. Sometimes even to the point of killing the person. 

While I cannot cite it – I also remember someone in an autism group I was in ages ago telling the group an interaction she had with police. While she might generally have been described as “high functioning” she is still autistic, and it can still show. She had an encounter with police where as she got more and more overloaded and struggled more and more to process what they wanted, the police responded with ever increasing aggression. It sounded terrifying. She was lucky, though. She was able to eventually blurt out “I’m autistic!” and apparently they had some training to know to back off and calm down. They then told her that she should have told them that she’s autistic right from the start. Which… I don’t know, maybe she should have? But also maybe she shouldn’t have to? Sometimes disclosing that we’re autistic to police can help, but sometimes it doesn’t. It can be hard to know what to do.

I am personally very afraid of having an encounter with police. I know I’ll need to act “normal,” and I also know that in that situation, I probably won’t be able to. While I rarely scream and cower in a corner with my hands over my ears anymore, I can’t definitively say that such behavior is entirely in my past. 

All of which is to say – while this can just be interesting observations while watching a youtube video about body language, it is also a very real thing that impacts the lives of autistic people, sometimes in incredibly dangerous or even deadly ways. We need better awareness that neurodivergent people do not necessarily act the way people think we “should” and that you can’t just assume someone is neurotypical until told otherwise. That’s how people get hurt. That’s why people sometimes respond very badly to autistic people and we don’t understand why or how to fix it. It’s why the job of fixing it has somehow been placed on the shoulders of autistic people, even as we’re just trying to live our lives. 

Anyway, just to say for one last time – I really do like Mr. Observe and I like his channel. I think he is genuinely trying to be thoughtful and realistic about what he’s doing. I just also think this is one area where maybe his education is falling a bit short.

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Income does not equal Worth

dollar sign image, creative commons, from Rareclass

I want to talk a little bit about a thing that I really, truly struggle with. I live in the US, which is an extremely capitalistic society. Here in the US, your value is strongly equated to your income, in some sectors to the point that your income determines your morality (rich people are good regardless of what they do; poor people are bad regardless of what they do). Disability is often seen as a moral failing, and being too disabled to work is seen as either shameful or lazy.

I have been very open on my blog about the fact that I do not have a job or do work for an income, as well as the fact that any time I try to do so I end up profoundly Not Ok. What I am less open about is the fact that I feel incredibly deep shame around that fact. Nor has everyone around me been understanding of my difficulties in work. I’ve had second wave feminists tell me (back when I was presenting as a woman) that I should get a job Because Feminism with clearly no understanding of why I wasn’t working. I once had a therapist spend months trying to push me to get a job until she saw me being Not Ok and changed her mind.

Now, intellectually I don’t at all think that income means worth. I believe that everyone has worth, just by existing. I believe that everyone deserves food to eat, access to healthcare, and a reliable place to sleep and bathe regardless of who they are or how much money they have access to. I believe the role of society is to support everyone. I believe that there are many ways to contribute to society that don’t necessarily involve generating an income. In fact, given that “generating an income” relies on producing something that other people are willing to pay for, I’d say that there are MANY ways to help and contribute to society that don’t involve getting paid.

Yet despite these beliefs of mine, I have strongly internalized the idea that worth comes from generating income, which means that since I don’t generate income I must not have worth. I am constantly bombarded by the message that I need to work for money to have value as a human being – both from society at large and from people I am or have been close to (not everyone I’ve been close to, but definitely some of them). I frequently wonder what kind of income work I could do that wouldn’t leave me Not Ok. Something like working all by myself in some dusty basement doing archival work or something (ok, that one is less a practical idea and more a fantasy. ANYWAY). 

I wish I had strong words of wisdom I could put out there for other people who feel like I do, but I don’t. All I have is 1) the firm belief that we all deserve to live, and thus deserve the things needed to live, regardless of our ability to produce an income, and 2) an internalized belief that because I do not generate an income I have less value than the people around me. It’s rough.

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To disclose or not to disclose

I’ve been thinking a lot lately about accessing healthcare while autistic, particularly while less-visibly autistic (since that’s me). Some in more general terms, but also in very concrete, this-is-relevant-to-my-life-right-now terms.

See, I’m planning on having a medical procedure done (it doesn’t really matter what it is, and no, I’m not sick), which is involving a number of consultation appointments and appointments for paperwork, appointments for scans – all sorts of things. 

I have not told them that I am autistic, and I don’t know if I should.

As it is, I am masking really hard during appointments and doing my very best to look and act in a way that people would see as “normal” while simultaneously gathering information, asking my questions, and generally just being mentally present for my appointments. This is an enormous amount of work and consistently leaves me completely exhausted by the end.

Of course, that on it’s own wouldn’t be enough for me to consider it a particular problem, but the fact that my mask is hitting limits and sometimes I’m having noticeable processing lag or not responding the way I realize later I’m supposed to IS enough for it to be a problem.

Communication with doctors has been an incredibly confusing blend of direct information and them (I assume) trying to be polite – except a large part of “politeness” is actually just being indirect. Then I take longer to respond, or I ask a clarifying question and the doctor gives me a funny look because from their perspective, they literally just told me what I’m asking about. The processing lag gets worse, I start to get flustered, it’s overall awkward. 

So yeah, I think about letting them know I’m autistic so that maybe they’ll understand why communication goes a little funny sometimes.

Buuuuut… I worry. 

I don’t actually know how they’ll respond. I’m sure that from their perspective, they will be supportive and understanding. But sometimes all that adds up to is immediately, drastically lowering their estimation of my intelligence or my ability to make choices about my own body. I don’t know what kind of latent assumptions they have about autistic people that will negatively impact our interactions if I make it known that I am autistic. 

I mean, I once casually mentioned that I’m autistic to a person on a train, and he immediately asked me where my Carer is. I don’t have a carer. I was taking the train by myself. There are assumptions everywhere. Since they are assumptions, the people who carry them are generally extremely comfortable forcefully shoving their assumptions onto me. It’s one thing to explain how my autism works to a random stranger I’m never going to see again. It’s another thing entirely to explain it to a doctor who is going to be Doing Things to my body.

Most of my posts to my blog are because I have Something to Say about a particular topic, but this time it’s because I’m genuinely lost. Is it better to share or not? I really have no idea. I wish I did.

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How functional am I?

I’m told I’m high functioning.

As far as I can tell, mostly this means that for short periods of time I pass for normal. When I’ve saved up my spoons and I’m not overloaded, if a random stranger glances at me they don’t see anything unusual. So, to the people who use phrases like “high functioning” and “low functioning,” I’m high functioning.

Now, intellectually, I know that’s full of bunk. I know that “high functioning” means “we’ll ignore any help you need” and “low functioning” means “we’ll ignore any strengths you have.” I’ve seen it in practice many times, and I’ve had people deny my difficulties or insist that I’m just “quirky” based on nothing more than their idea that I’m “high functioning.”

But turns out that as much as I know this way of thinking is incorrect, as much as I understand that functioning is not linear, it turns out that it has burrowed into my brain deeper than I ever realized. It pops out at me and leaves me struggling with… I’m not even sure what.

A little backstory – I was diagnosed as an adult. People can make some very inaccurate assumptions about my childhood when they hear that, though. Basically, by the time I got into kindergarten, it was unmistakable that something was wrong with me. However, no one knew what. Long story short, things tended to jump between trying to figure out what was going on, and just treating me as though my failings were my fault and I’m just weak. I know now what was going on and why, but those messages don’t go away so easily.

Now, a little while back, after a lot of work and many incremental steps, I reached the point of being able to go grocery shopping on my own. It was a huge accomplishment for me and I’m glad I’m able to do it. This involved a lot of working both on driving independently (very difficult both in terms of sensory input and real-time processing) and on being able to handle the intensity of the grocery store on my own long enough to get the groceries.

This is where it gets rather shameful. Where my rather treacherous brain betrays me. The grocery store I go to employs some people who seem to have intellectual disabilities. They are definitely not the kind of people who can pass for normal the way I can. If someone who rates people by functioning came on by, they would surely say that I am higher functioning than some of those employees.

Yet those “lower functioning” employees are holding down jobs that would send me into screaming meltdowns within a matter of days if I tried to do them. And sometimes, when my brain is being uncooperative, when all that inspiration porn I’ve been exposed to and all those messages of moral weakness I grew up with are echoing loudly in my ears, I wonder why they can do it and I can’t. I think I must just be weak or lazy the way people insist people like me must be. I’m failing to “overcome” my disability the way we’re supposed to in order to be worthwhile.

I know that this is wrong. I know that there are many, MANY errors in my thinking. I know that functioning is neither linear nor one dimensional. I know it’s only reasonable for people who are weak in ways that I am strong, to also be strong in ways that I am weak. I know that this is how it works. But sometimes, on a gut level, it seems I forget.

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The Dunning-Kruger Effect

So I do a lot of thinking about my social skills. I think about where they are now, I think about where they were in the past, I think about what I want to learn and where I hope I’ll be in the future.

One thing I notice when I look back is that I seem to have been subject to the Dunning-Kruger effect rather a lot.

So before I go further, let’s talk a little bit about what that actually is. Basically, it’s a form of cognitive bias where a person is both really terrible at something, while simultaneously being unaware of how terrible they are at that thing, even to the point of thinking they are good at it.

Apparently there are four main points in play here. Basically, someone who is really incompetent at something will often:

  1. fail to recognize their own lack of skill
  2. fail to recognize genuine skill in others
  3. fail to recognize the extremity of their inadequacy
  4. recognize and acknowledge their own lack of skill, IF they have been exposed to training for that skill

And… yep. That’s me in a nutshell, at least when it comes to social skills. In the past, I honestly had no idea I was so clueless in my ability to socialize, related to others, make conversation, etc. I even, at times, thought I was good at it (I wasn’t. oh gods, I really really wasn’t). I am increasingly finding that the more I learn, the more aware I become of being so utterly clueless, at least of anything beyond the basics.

I am sufficiently clueless that I don’t even know what good social skills actually look like. I mean, I can see some people are obviously socially successful, but I don’t know how to learn from their example or apply whatever they are doing to my own life. I cannot differentiate between good advice and bad advice. Socially speaking, I am extremely vulnerable and I always have been, just because of how much I don’t know. Sometimes I worry about being taken advantage of, because as soon as I am criticized in a social arena I will back off and apologize, no matter what. Because often, I did fuck up somehow and I just don’t know how. But it means that there could be times where I don’t fuck up, where someone else fucked up, and they can blame me anyways because I don’t know the difference. This is something that worries me, because I cannot make myself any less vulnerable than I am.

That it is so possible, so probable, so be so clueless of my own lack of skill really does worry me. So now I try to offset this effect by being as aware as possible of my own incompetence. It’s a lot easier to learn when I know I have a lot to learn and can remain open to said learning.

I’m honestly hoping at least a few of you will be able to relate to all this. And if you can’t, remember that this Dunning-Kruger effect is actually a thing. Which is to say, try to be patient with me, and maybe with others who are like me. I am trying, but it’s super hard.

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Can we please have a conversation on this?

Ok, this is getting written just minutes before I am posting it, so this will probably be pretty rough. Let’s see how this goes.

I follow a woman named Caitlyn Doughty on youtube and on her blog. She is a mortician who talks about death, and grief, and burial practices, etc. She wants people to become more connected to death and grief and such, and is generally not in favor of how our current society generally tries to avoid such things. This is a really rough explanation, but I hope I’m getting the idea across. I really like her youtube series Ask A Mortician and generally support her ideals.

Now, there’s one thing in particular I want to focus on here. On her blog, she is talking about an “End of Life Option Act” currently in debate in California. She is strongly in favor of it, believing that people who are terminally ill should have the option to request medication to peacefully end their lives. Honestly, I can see her point. I would even go so far as to say I support the idea.

Only there’s another side to this. A disability side. A side where doctors (and others) will take it upon themselves to decide whether or not a severely disabled person’s life is worth living. This is a very dangerous and Not OK thing (and there are links out there about it; I’m sorry I don’t have any on hand right now). So in disability communities, often people are absolutely against Death With Dignity legislation, because of how it could easily be abused.

What I think needs to happen is for these two groups to have a conversation. Those who are in favor of things like the End of Life Option Act need to sit down and listen to the concerns of disabled individuals and find ways to address them. The concerns of the disability community are serious and entirely valid, and deserve to be heard.

Which is why, way back in February, I decided to give it a try. I went ahead and emailed Caitlyn via the email address given for Ask A Mortician on her website. This is what I emailed:

Hello. I am a big fan of your work, your book, your youtube channel, and your message of death positivity in general.
You recently posted a link to your facebook page talking about a landmark decision in Canada to allow two women to “die with dignity.” I support such legislation and am a big believer in people being able to take charge of their own deaths.
However, I also run in some circles that are strongly against such legislation. As such, I have a serious question for you. I know you cannot answer individual mail anymore, but I hope it is at least something you are keeping in mind as you do your work.
I am autistic, and am at least somewhat aware of disability issues. One of those issues is the extremely serious problem of doctors believing that disabled lives are not worth living, and doing things like pushing disabled people to not undergo life-saving treatment, or deliberately giving needed treatment so slowly that it does not do any good. One of the responses to this problem is to be against “death with dignity” legislation, under the idea that there is absolutely no way to enact this without leaving it open for abuse by doctors and caregivers of the severely disabled.
I like to believe that there is a way to cover both of these issues. So what I want to know is – as a proponent of death with dignity and such, how are you taking into account the other side of the coin, with the current and horrific problem of people in positions of power already concluding that disabled lives are not worth living, despite the fact that many of those disabled people feel very much so that their lives ARE worth living? What do you think is the best way to prevent abuse of “death with dignity” laws or rulings in the future?
Thank you
Andraya
Now, I knew getting a reply was unlikely. I’m sure she’s very busy with her projects and what’s going on in her life. However, I still found myself hoping that she would see this as a significant enough issue to address. That there would be some acknowledgement from her on how important it is to never decide for someone else whether or not their life is worth living. But, I suppose unsurprisingly, there has been nothing at all. And now she’s seeking support for this End of Life Option Act in California, and all I feel is sadness that the death with dignity people won’t bother to have a conversation with us.
As it is, I don’t think I can fully support death with dignity anymore. At least not until we can have this conversation that we really need to have, addressing the very real concerns regarding possible abuse by doctors. Being heard is important, and it hurts when it seems the concerns of disability activists are seen as irrelevant.
UPDATE: Not long after putting this post up, Order of the Good Death contacted me by email! It was mostly informational, adding some details that weren’t in the blog post about safeguards and such that exist to hopefully prevent abuse. Apparently that is also why they want to send it through the legislature rather than have it go by a ballot – those safeguards would probably be dropped if it went to a ballot measure. So these are the points that Order of the Good Death made regarding safeguards:
  • It allows only qualified, terminally ill and mentally competent adults to request and obtain a prescription from their physician for medication that the patient can self-administer to bring about a peaceful and humane death.  Two physicians must confirm the prognosis is terminal.
  • It requires two witnesses to attest that the request is voluntary.
  • It protects physicians from civil or criminal liability, and from professional disciplinary action, if they fulfill an eligible  individual’s request. Participation by doctors is fully voluntary.
  • It provides safeguards against any coercion of patients: It establishes felony penalties for coercing or forging a request; and it honors a patient’s right to rescind the request.

That the medication is to be self-administered is, I think, the point that I find the most important. I do not believe even these measures completely prevent possible abuse, but it does drastically reduce it.

Plus, I am both surprised and pleased that I was contacted at all. That’s pretty cool.

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Processing

I am going to talk about processing speed YET AGAIN because things have happened in my life YET AGAIN to bring it up, though I suspect they will always happen for the rest of my life.

Before I get into that, though, I want to side track a little bit. I have gathered that one thing people like to read about is autistic perspective. Not only on specific issues and the life (though yes, that is important) but just how we see the world and what just existing is like for us. Which is kind of cool and I like sharing perspective, but is also challenging. I have lived in my own head for my whole life. I have spent exactly 0 years, 0 months, 0 days, 0 hours, 0 minutes, and 0 seconds living in anyone else’s head. So yes, I know all about my own perspective, but what I know much less about is how that is different from neurotypical perspective. There are some things I can figure out are different for me just by looking at behaviors and the like, but there are lots more that I only seem to know about when other people point them out. Sometimes they are expecting something from me that I consider absurd and in discussing it we both learn that it is easy for neurotypicals but difficult for me, or we’ll be having a conversation and I’ll just casually mention something in my head and they’ll respond “wow, that’s totally weird!” or whatever else.

When that happens, I write about it. This helps me to work through it since I do a lot of my processing via writing, and apparently it is useful for other people to read about in order to understand more about autistic perspective. Yay understanding!

So anyway, this is a thing that I have found happens fairly regularly. Sometimes with the same person, over and over and over again. I’ll explain what things are like for me and why I do things the way I do them and they’ll be all “oh, ok, I see” and then a few weeks or months later, it will come up AGAIN. And AGAIN and AGAIN and AGAIN. Yes, it has gotten a little tiresome for me.

It usually goes like this: someone says something that hits a button or a trigger or something, and I feel hurt. Then I process that for what is, apparently, a Very Long Time (it is not unusual for this process to take weeks). Eventually I bring it up and ask to talk about it, sometimes needing to refresh their memory on the matter since to them it is often ancient history already.

There are usually two phases of response to this, one which varies wildly and the other which is pretty consistent. The first is just their response to me saying I am hurt or upset about the thing. Ideally they will be willing to sit down and talk with me and listen to my perspective about why and how it was icky to me and we work it out (happily, that is what happened the most recent time. sometimes people get very resistant to working it out or hearing me out which is a problem in and of itself).

The next part is always, ALWAYS, about the fact that I “waited” so long to talk about it. Sometimes people get upset with me or accuse me or “bottling things up” or being stubborn or something, and other times people just request that I bring things up right away when something hurts or bothers me.

And then it’s all kinds of uncomfortable, because honestly, I cannot do that. I rather wish I could, it sounds like people would respond much better if I did. But that just really, seriously, is not how I work and I cannot make myself work that way.

Instead I have to process. First, I have to notice that I am upset. This is usually pretty quick, but when I was younger it could take a while. Then I have to connect that emotion to it’s cause – the thing someone said or did. Usually it starts off fairly broad (“something about that makes me feel icky”) and then I have to work through exactly what it is that tweaked me (“oh, this word hit this trigger so when they said these words I actually heard that message which may or may not actually be what they meant”). Then there is a period of working through what I feel and whether or not I can work through the upsetness on my own. If I can, I don’t bother to bring it up because it just doesn’t seem worth it. If I can’t, then yes, I’ll bring it up as a thing to talk about. This is not a quick process. If there is something going on in my life that is demanding my processing power, then it can take even longer.

To make it more specific – the most recent example of this was with my psychiatrist. We were talking about ativan and how I was sometimes tempted to take it while I was dealing with my cat Genzi’s cancer because of how overwhelming and stressful and awful it all was. In that conversation (which happened over email), at one point she mentioned that dealing with stuff like that builds resilience. This happened to hit a trigger of mine and tweaked me kinda hard. Weeks later, when we were meeting in person, I finally brought it up, saying:

In an email convo about ativan we had several weeks ago, you said “the act of coping through tough periods builds resilience.” Only I heard “you are weak and need to be stronger so that you can stop being weak!” I really hope that’s not what you meant and I know this is a trigger point for me, but I’m hoping you can give me more words to clarify and reassure me that’s not what you meant. Unless it is what you meant. In which case, maybe nevermind.

Then we talked about it. Yay! Turns out that weak thing was totally not what she meant, and I talked a little bit about how I have a very sensitive trigger there and how it hit that trigger. THEN she brought up the thing about how she wants me to just bring things up right away instead of “waiting.” *sigh*

I know I’m saying this over and over and over again. Autistic people in general are often saying this over and over and over again. But seriously – we need time to process. I often go more slowly than other people in conversations. I take more time to think through things, and I need more time to find my words. Sometimes a LOT more time. Sometimes weeks. It’s not because I’m “waiting” or “hiding things” or whatever else. It’s because it takes me a while.

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Museum day

So this sunday I went to the Franklin Institute. I greatly enjoy museums, and a friend of mine had found a leaflet from the museum proclaiming “Sensory-Friendly Sundays.”

The description on the front says, “The Franklin Institute is proud to welcome families, adults, and groups with members on the autism spectrum to Sensory-Friendly Sunday, a day to enjoy the museum in your own way and in your own time. All are welcome!”

I’ll repeat on bit here: “a day to enjoy the museum.”

It only occurs one Sunday every two months, which I thought was kind of dismal, but I was also heartened that they were having sensory-friendly days at all, and I wanted to try it. So on one of the days listed, we went.

Well, we got there in the early afternoon and started poking around. We didn’t see much different about it but weren’t too concerned about that as it was being an enjoyable time. There were various enjoyable things to look at and interact with and it was going fairly well.

Until we got to the electricity section. Then it all went horribly, horribly wrong. It turns out that on the ceiling in the middle of the electricity exhibit there is a fairly large tesla coil. A tesla coil that goes off incredibly loudly, with no warning whatsoever.

We were there in the room, looking at an exhibit, when an incredibly loud, deeply painful ROAR occurred. Nothing was going wrong or was broken (as I first thought must have been happening). Nope, apparently that is just part of the exhibit. No signs warning us of it (at least that I saw), no announcement or notice ahead of time, just a sudden, horrible noise.

Honestly, that pretty much took everything out of me. Once I could feel my limbs again I left the room. And I tried to keep doing the museum, I really did. I didn’t want that to destroy the day. But honestly, I just couldn’t. It had taken too much out of me. It had been too painful. It was not long after that I realized I really had to leave.

Which, of course, brought up the question – what happened to this sensory-friendly day the museum was supposed to be having? A loud, painful noise given without any warning whatsoever, so that no one in the vicinity has a choice whether to be subjected to it or not, is extremely far from sensory-friendly. I would call it downright sensory UNfriendly. Maybe a sensory onslaught.

Before we left we went back into the ticketing area and looked for another copy of the leaflet to look at. A task which proved somewhat difficult, but we eventually found one. Turned out carefully looking over it and reading all the details on the back gave some critical extra information. “Specially adapted exhibits throughout the museum from 8:00 am-12:30pm” (emphasis mine). Now, I will grant you that it is my own fault for not reading the fine print. However, I do not think it’s my own fault for thinking that “day” (as mentioned in their description) actually means “day” rather than simply “morning.” But apparently when they say “day” they mean “morning” and personally, I think I’m justified in being unhappy at their word choice. I find it disingenuous.

Even for an autistic adult there is aftermath to such an event (and if it had happened when I was a child, I can only imagine the meltdown that likely would have resulted). Somehow my friend and I made it back to their apartment despite the fact that I was shutting down and finding it increasingly difficult to walk. I wound up collapsed on my friend’s bed, wearing their noise-cancelling headphones, for I don’t even know how long as I slowly, gradually, came out of my shutdown and became able to deal with the general noise and chaos of the world again.

I also want to mention what my friend was pointing out – while that noise was particularly bad for anyone with sensory difficulties, even neurotypicals would find it bad. As they put it, “It’s just really fucking loud and completely without warning. Most people don’t go to the museum to have the crap scared out of them.”

I am extremely unhappy with the Franklin Institute and think what they did, what they are doing, in the electricity exhibit is wrong on multiple levels. Is it really so impossible for those already rare sensory friendly days to actually be, you know, a whole DAY? Is there no reason they cannot give warning when they are about to assault their guests’ senses so we can opt out if we choose?

This was not ok.

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An Experimental Sponge Bath

Quite a while ago I wrote and posted How Do I Adult: Showering. Some people responded with comments about difficulty in the actual sensation of water hitting them through the shower head. There can be possible solutions to this just by changing the way the water flows through the shower head, but recently I thought it might be worth looking into how sponge baths work.

There seems to be a general assumption out there that sponge baths are either for people who are bedridden or for people who do not have running water, and all of the instructions I could find out there are specifically directed for those groups. I took the information and modified it a bit, since I can move around and do have running water, and did an experiment. Here’s how it went!

The initial set-up wound up being more about what worked best in my bathroom rather than about any limitations my body had. I took a large aluminum mixing bowl, plopped a spoonful of baking soda in it, filled it with hot water, and placed it in the bathroom sink. I put a towel on the floor to stand on in order to catch most of my drips. Then I grabbed a washcloth, dunked it in the bowl to get it wet, and got to scrubbing.

Basically, I would get the washcloth wet, scrub a part of my body, and then re-dunk the wash cloth. This actually was a very quick process and only took a few minutes to scrub my whole body. After that I put the washcloth aside and leaned forward to dunk my head in the water in order to wash my hair. I got my hair nice and wet and combed it to get the baking soda through it.

Next up I dumped the used water down the shower drain and set the bowl aside. I got the water running in the sink again and stuck my head under it to rinse my hair. I also decided that I wanted to soap up the parts of my body that are most prone to being sweaty or smelly – namely, my armpits and my genitals. So I grabbed some soap and quickly soaped up those spots. Then I used my wet washcloth to wipe the soap bath off, wiping and rinsing the washcloth in running water in the sink.

I have read that it is not necessary to rinse after a baking soda bath, but I decided to rinse myself anyway. Keeping the water running in the sink I rinsed out the washcloth I had used, and then lightly rubbed myself down with it much the same way I did to wash myself. I got it nice and wet with the water, wiped down a part of my body, and repeated until I was done.

Now all the was left was final clean up! I dried off with a towel the same way I would after a regular shower. I used the towel on the floor to wipe up any water splatter on the floor, and I rinsed out the bowl I had used for the baking soda bath. Finally, I hung up the towels used and put everything away.

Alternatives

I did things the way that I did mostly because my tub/shower gets cranky when the water is switched from the shower head to the faucet. Another way to do this would be to get into your tub like usual and sit down – either right in the tub or on a shower stool. You could also skip the baking soda entirely and just scrub with water, though you’d probably still want to use soap on armpits and genitals. Yet another option would be to go ahead and soap up entirely. Since you would still have access to running water, you could use a cup to catch water from the faucet and pour it over yourself to rinse. Hopefully that would still allow for a thorough cleaning while avoiding potential sensory difficulties from the shower head.

I imagine there are any number of variations that are possible that I haven’t thought of at all, that could accommodate different people’s needs or bathroom arrangements.

Final Thoughts

Overall I am happy with this experiment. Both my skin and hair feel lovely and soft, and I still felt refreshed and clean once I was done. I am not always very good at showering quickly and especially have difficulty getting water a temperature that I am happy stepping into. This was much faster and water temperature had a lot more flexibility to it since I did not have to stick my whole body into it. Also, it is currently hot and sticky out, and my bathroom is not temperature controlled. Being able to just stand there wet, without anything hot (or even warm) beating against me was quite nice.

The bad part: I still got itchy! So itchy! There are a number of possible explanations I can see for this:

  1. I am prone to itchiness when it is hot and sticky anyway, particularly after a shower. It’s possible that my itchies were just typical post-bathing, hot-weather itches.
  2. I used a harsher washcloth than I usually do. In retrospect, I’m not sure why I did that. Probably something to do with thinking I should “scrub.” That probably made my skin unhappy. In the future, I will stick with my nice, soft, friendly washcloths.
  3. It’s possible I should have rinsed the baking soda better than I did. I am least convinced of those one as the part I rinsed the least (my back) is also a part that is not itchy. However, I may see if I can get my recalcitrant plumbing to cooperate with me and attempt another sponge bath experiment in my tub, so I can rinse with a cup instead of a washcloth.

I currently intend to continue my experiments given how well I think this one went. If it continues to go well, I may even write up a How Do I Adult post about it all. As it is, I do believe it is an experiment I can recommend to other people as worthwhile if showers are difficult for whatever reason.

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