[Content: Mentions of Depression, of Partial Hospitalization programs, and of the feelings/enjoyment/good at charts?]
One of the exercises I learned as a kid about depression involved making a list of the Things I Enjoy Doing. There was also the Things I Am Good At list, and the These Faces on the Chart Match My Feelings Today list. There were lots of other ones, but I’ll stick to these ones because they are the Alternative Coping Mechanism lists.
When I was in a partial program, the day would begin with listing the feelings off the chart of faces on the wall, and this would happen at several points during the day- usually at any transition. Part of it was to track our self assessment, but it was also supposed to help us identify our feelings more accurately, and learn what the facial expressions were for them. If someone showed an emotion “wrong” the teachers would demonstrate “appropriate” ways of showing emotions. If someone chose emotions that flagged their depression screens, we’d have to add an extra thing to the “Things I Am Good At” list. I’ve also seen it listed as a “Strengths” list. Every day, we’d have to come up with 3 things we were good at. It was passable to repeat the same things most days (which I did- I did the same for the face charts most days) though coming up with new ones was a “good sign.”
If I remember correctly, my charts usually looked something like this:
Savannah is good at:
I seem to remember a lot of “Ambivalent” on my sheets after a staffer explained what it meant. And I could list off those “Strengths” half asleep by the end of my time in the partial program.
A lot of time was spent on the identification of “appropriate coping skills.” We had lots of sheets and stories on the differences between passive, assertive, and aggressive responses to things, but like several of the kids in the program I found practicing them difficult- I could repeat line by line the “assertive” response I was taught at home, but if it was my mom’s second husband this was a “behavior” and “manipulative,” so what was the point?
The other was the “Things You Enjoy List.” It was basically supposed to be a list of things you liked doing so that if you began to slip into a depressive episode then you could look at the list and do one of the things to remind you of good feelings- or at least put off the omni-present gloom of a depressive episode for a little while. At the time, my list was essentially as follows:
- Playing with animals
- working with animals
- doing art
Seeing as how this is basically a re-wording of my “strengths” list, I think that I had quite a few frustrated staff trying to figure things out. I had a dog, maybe more, at home at the time (my pet timeline and my treatment timeline aren’t ones I have attached to each other to be sure,) and I sometimes would volunteer with the support of my Theraputic Staff Support at a local hab aide riding facility. (Though I think that might have been after the partial program…) Since they were trying to teach me social stuff too, having me go read to myself in the corner wasn’t exactly feeding into the treatment goals that had been developed, and there’s only so many times I go from group art session into hyper focusing on my own project to completely miss the group part before they throw their hands up in the air.
The one exception was in the summer when an additional word was added: “swimming.” We would “field trip” once a week if we were there during summer sessions, and usually it would be to the pool. While there was some supervision, it wasn’t close enough to tell the difference between playing with other kids and playing in the midst of other kids in the pool. I lined up in lines to jump into the deep end more because of knowing that if I didn’t the life guard wouldn’t let me jump in at all. But as the pavement left my feet and I plunged into the pool, it was heavenly.
I get why they made us do these lists. One of the things that always ends up on the “things to help with your depression!” lists is “do something you love/a hobby.” And it’s good advice- unless your depression manifests itself by making even things you love unappealing. You know that you really enjoy super heroes, or crime shows, whatever, but when you scroll past them on Netflix or Hulu none of them seem interesting, nothing appealing. You got a whole big stack of Forensic Anth style Crime novels, but starting that first book seems … unsatisfying. You have a massive knitting project that you loved when you started, but you went on hiatus and now that it’s been a while you can’t remember why you enjoyed it.
At least, that’s what it’s been like for me for a while. It’s pretty much horrible- I love being able to invest myself in something I love, completely zone into it for hours and hours on end. I like to hyper focus, to learn a ton of facts that only seem important to me, to have access to knowing everything about such and such a thing, to watch every episode, read every book, listen to every song in a completest fashion. And a lot of times when I’m depressed, it robs me of that. I can’t even get started on binge reading the Tudor book I picked up a few months ago and was so excited about.
For a while, I was working on this by baking once a week regardless of if I felt up to it or not. This worked best with cookies- They are pretty basic to make, but you can also make them as complex as you like. I’m a pretty good baker according to the people I feed, and when I complete something there’s a tiny pop of having completed something- almost like the feeling of gaining experience points in an RPG.
So I know that actually following through can help stymie a depression spiral. The problem is actually following through on doing things. And when impaired Executive Functioning mixes in, identifying those things in the moment is just that much more difficult.
So I’m going to do a bit of a sad list here of things I know I enjoy, but which I might forget about. I want to take this idea that was used a little awkwardly for me in a treatment setting, and rebrand it as my own and as an assistive tech of sorts. If you are reading this and want to join me, feel free to do so whatever way feels worthwhile for you.
This is about helping you. It isn’t about making others feel better about your depression/anxiety/etc. It’s about having a tool to help yourself. The things you write down only has to be things you enjoy, and as long as it isn’t harming others it doesn’t matter what it is. If it’s flapping and rocking for hours, that’s fine. If it’s meowing in your room, that’s cool. This is about you and what might make you feel good, not any one else. Yes, you may want to have a safe, private area to do them (you don’t want to harm people or subject yourself to undue risk/the law) but they are still for you. You can do them in whatever tense you like. I’m doing third person partially because of familiarity, and partially because I want to break off the connection between writing about my care plans in third person and leaving them in the control of service providers and staff who might or might not have my best interest at heart.
Things that Savannah remembers enjoying that she might forget:
- Baking things. Savannah likes baking things. Cookies are easy.
- Cooking for other people. This sadly requires other people, as cooking for herself is a different set of brain ordering and decision making, so Savannah rarely makes complex dishes just for herself.
- Going to the coffee shop to write. Savannah likes the coffee shop and the people there, and even though Savannah is nervous about actually interacting with people who aren’t on her “safe” list outside of advocacy contexts she does like being around people in small to moderate amounts when non-scripted interaction isn’t needed.
- Writing. Savannah likes writing, but she can’t get started much of the time because of her Executive Functioning issues and/or self-consciousness.
- Savannah likes throwing things when she is frustrated. Savannah has soft things that she can throw in a room safely, so that she doesn’t harm people or objects in doing this when she feels she needs it.
- Savannah likes Earl Grey Tea, especially in the Star Trek Mug. The steps in making EGT are: 1) get out cup 2) get out tea bag 3) put tea bag in cup 4) put water in electric kettle 5) turn kettle on 6) wait 7) electric kettle clicks off 8) Savannah pours water over tea bag 9) tea steeps 10) add a little almond milk 11) drink tea.
- Crime novels. Savannah can either read them or listen to them on audio book from the library. Savannah has a big stack of Patricia Cornwell books to read.
- Sci-fi and fantasy stories. Savannah likes sci-fi and fantasy. Even though she is tired when the TOR.com newsletter comes, she should try to remember how much she enjoys the short stories in there.
- Savannah likes vocalizing. This is not the same as talking, but can including singing. Meowing, purring, beeping, meeping, and screaming all are examples of vocalizations that make Savannah feel better. (The screaming is better for up at Her mom’s house in the woods though.)
- Savannah likes the recumbent bike. It doesn’t put stress on the joints the way that other equipment does. But Savannah both has difficulty getting to it, and has a hard time seeing it as a priority. She also needs to be careful not to over do it, especially when she has stuff to do the next day.
- Savannah likes certain TV shows. This includes, but is not limited, to: Doctor Who; Law & Order (various incarnations); Criminal Minds; CSI (NY or Original); Bones; Agents of Shield; Sleepy Hallow; Project Runway; Castle; Eureka; Warehouse 13; Numerous genre stuff that the BBC puts out; regency-ish period dramas; American Pickers; Oddities; and so on.
- Savannah has a lot of youtube channels she watches. She does like the science ones a lot, but she needs to remember that she also likes the non-science ones she’s subscribed to, so maybe she should watch some of those beyond vlogbrothers and weezywaiter. There’s nothing wring with liking the science channels, but Savannah is often pleasantly surprised when she follows through watching the other channels too.
- Savannah likes genre movies. She often forgets about watching them because they seem like more energy than they really are. It is okay is Savannah doesn’t remember what the movie was about later, too. It’s okay to turn it off half way through if Savannah decides it’s actually bad and it’s not about trying to watch it like normal people. It’s ok to get distracted and wander off while the movie is running.
- Remember: Savannah particularly likes watching Super Hero Movies, Period Dramas, and The Decoy Bride. It’s okay for Savannah to watch Captain America or any movie as many times as she likes as long as she gets her work done and she falls asleep before sunrise.
Okay, that’s my attempt at an undated and more useful to me list. What does yours look like?
Today, Monday November 18th is the “This is Autism” flash blog. From the official website for the This is Autism Flashblog on Monday, Nov. 18, 2013:
Tell us what “This is Autism” means to you. You can write a paragraph or a blog post, contribute a poem or a video, make a comic or a graphic. Use your imagination. Let’s tell the world what autism is in the words and works of autistic people and those who love and support them.
I personally have a hard time writing for flash blogs- the timeline means I inevitably feel like what I can churn out in the time span isn’t polished enough, or put in order enough. Sometimes I just end up spitting something out (like today) and moving on, but more often I sadly watch the time span of the flash drift by while I grope about the time soup for words. While it’s true that some days something clicks and the words come out fitting together like some sort of expert Tetris player is winning a tournament in my head, most of the time spitting out the “articulate” is a long, time and energy consuming process. On the worst days, it’s like putting together a blank jig saw with relatively uniform pieces. It can be done, but it’s time consuming and when a deadline is added the soothing rhythm of the process is lost.
Time soup is probably the best description of how I experience time- I know it’s swirling by, but unless I have anchor points the rate or even the order I’ve past the memory ingredients is a bit fuzzy. In high school, I collected wall calendars. When asked to draw a dream art studio in art class, there was a wall filled with calendars hanging in rows. Having that reminder that there’s meaning to that chaos was helpful. Now, though, I don’t have any wall calendars. I don’t even have a (functioning) wall clock. Though there’s an antique clock on my mantle, I often forget to wind it as it has a function of reminding me of the past, of history, rather than of actually telling me where I am in my own story.
Instead I remember things by attaching them to documentable events, ones that I can either do math for (I graduated HS in 2006, so since x happened in 9th grade and it was spring, it was 2003.) or that I can research (We saw Titanic in the theater the week grandpa Logsdon was buried, but it was after the new year, so he died in 1998 since Titanic came out 19th December 1997.) I can’t always locate my memories within the timeline in a timely fashion, so I look for another memory that I can locate in a hurry. But there are some things, some events, some orders that I can remember that have very little actual use.
While I’m physically capable of numerous things self care wise (though as my physical health alters, that number fluctuates) my difficulties with time mean that I can’t identify if it’s time for y task to happen. I also will look at a room, and be unable to identify what task comes next out of this larger picture of this room needs cleaned. Unlike words, visually ordering jigsaws or physical objects doesn’t translate to real world situations. The process of planning out all the steps and then motor planning those steps enough to put into action just aren’t able to set- a bit like jello that refuses to set before you need to leave. Sometimes it works enough to get something done, but more often I end up with a sad, soupy mess.
But this is why I get help- my sister is being paid to clean my house; someone in an office somewhere schedules my transportation and hotel for an event; a friend walks with me after a hard day so that I don’t forget my purpose, or so that I don’t forget that there’s a purpose to the lit up man on the sign across the street. It is why I can see the networks of people I’m building up around me, crystallizes relationship webs- like frost making them visible in the early morning. It reminds me of the last time my best friend called me to work out a problem of his, the last time I texted him because I couldn’t figure out my emotions and it helped.
I might not know how long ago it was, but I can build off of the memory of brushing someone’s hair, the beautiful meditative process of granting that tiny help in the eye of executive chaos. It reminds me, too, of another friend’s iron revealing imagined patterns as I ironed on office carpets, and of that friend and I sharing a moment full of leaves granting peace as time hurtled forward. Or of writing back and forth with a parent, using the well of my memories to help improve their child’s life. Of exchanging the same words over and over, back and forth in an echolalic loop that bubbles up with meaning that we don’t explicitly voice- relationship. Of sharing a moment where words are meaningless, and in behavior dwells our meaning.
Of community, built together in ways that without connections able to be built alike we wouldn’t have access to. Of community that we own, rather than attempting to purchase access to through the blood and tears of normalization. Of community that doesn’t demand indistinguishability- just acceptance. Of community, that feels the same stings and can sometimes come together in many bits and pieces to make a bigger response than any one behavior alone.
This may be relatively stream of consciousness, and it certainly didn’t go where I thought it would, but it came to a valid point- that the community we form when we accept our autistic selves, when we value the autistic selves of each other, is one of the most powerful forces of autism. It is building, not destruction, defining our autism. And together it makes us powerful.
[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.
Yesterday, Linda Holmes wrote a review of Allie Brosh’s book (which you should all read- if you haven’t read her blog, she’s a painfully real yet comedic story teller, and if you have there’s some new pieces in it.) for NPR. Except it didn’t look like a lot of book reviews, it wasn’t static- it was more about what it means for Brosh (and others like Donald Glover) to write about their struggles not from the perspective of having overcome them or left them in the past, but of having them in the present. I feel like the following gets to the core of the essay:
But there’s something to be said for the currency of Brosh’s vivid, sometimes nervous-making chronicles, or of Glover’s scribbled notes. It’s very sterile and very misleading to hear about battles only from people who either have already won or at least have already experienced the stability of intermediate victories. It presents a false sense of how hard those battles are. It understates the perilous sense of being in the middle of them. It understates how scary they are. -Linda Holmes, Present Tense: Allie Brosh, Donald Glover, And Hurting Right Now, NPR
Holmes was talking about this in the form of writing- be it a book, a blog, or pictures of what you’ve scribbled out in a hotel room. I do try to engage in this sort of writing myself, but so much of what has driven things has been the past. And I’ve told about my past so often, some of it has lost the painful desperation. Other things haven’t, and I try to limit my posts here on this blog to events that even when they are from the past are connected, somehow, with what things are right now. Current events, new perspectives, placing them within a larger context than “I.”
It’s difficult, but not as difficult as opening up about what is emotionally current in my life, In September, I started a post. I hope to get it out soon, but I’ve been saying that since the day I opened the tab to start writing it. It’s been difficult, even though the most intimate parts are there in the draft folder already, waiting for those finishing touches and paragraphs of framing research to connect it to the larger contexts. But it’s waiting, and going into the file means sitting there, paralyzed as to what words could possibly come next. And with that is a circling terror- is it safe to say this “aloud?”
Writing about our current emotional statuses is hard. Allie Brosh has written a little bit about it, if I recall, though within the larger context of her depression. I know that when I keep trying to go back to any of the posts in my draft folder, terror comes out. It’s not just confronting the now, getting it out into words, though that too is difficult. Part of the terror is that every word I write brings me closer to sending it out into the world. And that can, indeed, put my freedom and peace of mind at risk, not because of a lack of privacy or anything like that, but because being as open and raw and now as that invites the care mongers to flood in. I fear greatly that people will react as though I don’t have steps in place, as though I’m not surviving through this, that I need rescued. That if maybe I was forced to the “right” doctors I wouldn’t have this now. (Hint: as someone who has had various points of this now for most of my life and have been in treatments for the majority of that time, you forcing me or having someone else force me into another hospital or care setting isn’t the “right” approach.) And by making it go out into the world, I’m putting myself at risk for your loving emotional violence.
I do write anyways. Not always here, but somewhere. I write poetry; I use tumblr. And part of that isn’t just because of writing, but because of the impact that writing can have. I know that writing can change a person’s mind or life— I’ve both been changed and have heard from people whose minds/lives I’ve helped change. But that action goes beyond writing, beyond casting into the void for another void-dweller to pick up and carry next to their heart.
Because that power goes beyond it. I’ve been involved with advocacy for many years now, since I was a child. Large chunks of that has been in mental health advocacy. And when the topic of ferreting out some more, new advocates comes up, the family members present and the service system people present always tag on something I find both counter productive and slightly obscene: “… who are stable/well/successfully managing their Mental Issues now.”
Don’t get me wrong- it’s important to take care of one’s self and to take time for yourself in this work. Immeasurably so. But that is something different entirely from what those words say. They say that the people who frame themselves as our allies don’t see us as worth working with. That our insights must necessarily be wrong, or useless, or both. It says that they care more about our pasts than our present, let alone our futures.
I hear these words from people who are supposed to be working on changing or reforming the system as it stands right now, and it’s clear they don’t actually want the words and experiences and, yes, wisdom of the people who are in it right now. These people seem, from here, to want to insulate themselves from the difficulties and fear that they would be confronted with in working with someone who they know is “still in it.” They can’t wrap their heads around following through with the needed support to actually work with “those” people— consciously or not, they cling to the idea of supporting a person with Serious Mental Illness (a technical classification) being both a burden and necessarily paternalistic in nature. I do hope that for most of the people I work with it isn’t a conscious thought, but it comes out here and there, and not just on this issue.
It’s a deeply misleading flaw, as much as relying on written narratives which makes those struggles into a past. Then we sit and wonder what went wrong in our efforts, even though the very reasons we bring to people to justify advisories like ours tell us why. We go to offices and we say, “Self advocate advisories are needed because you can’t see what the flaws are if you aren’t on the end that will experience them. You can’t watch flaws in a plan that about a life outside of your experience.”
There are other things wrong with the “but are well now” direction. It dis-empowers people further who are already dis-empowered on both societal and systemic levels. It enforces a framework that leaves those with disabilities that are life long, including those with DDs, being seen as less “valid” observers and contributors. It further continues the stigma about being actively mentally ill, even within circles that claim to push for de-stigmatization. It reinforces the messages that we’ve internalized telling us our voices are worthless. But as far as a fatal functional flaw? I believe that Holmes’s comments on writing are the crux of it.
It’s very sterile and very misleading to hear about battles only from people who either have already won or at least have already experienced the stability of intermediate victories.
Typically, I have one style here, and another style other places on the internet. While this is useful in some ways, it often means it takes me a while to get new posts up here. So I’m going to try something:Elsewhere on the internet, someone asked, “Has your family thought of getting you tje training and support to be more self-sufficient?”
When I first moved out, we didn’t realize that I needed the support that I do. I’ve talked about some of these things before on this blog, so I’m going to give each of them a paragraph.
I understand general concepts around money management, but am unable to consistently apply it to my own life. (example: I might need something but not get it because I’m worried I won’t have enough money, even though it’s what the money is supposed to be there for.) Additionally, I have executive functioning issues that mean that making sure the right things happen at the right time is extremely labor intensive for me. And finally, my anxiety levels when dealing with the various sorts of paperwork around money are high enough that I can’t get it done- I can’t believe the reasonable parts of my brain during an anxiety episode. Therefore, I have a payee who doubles as a financial manager. He manages my money, and the paperwork involved.
When I first was living on my own, and a couple of attempts there after, I got very sick, sick enough that it was life threatening. Each case was related to how my executive functioning skills (specifically around time, prioritization, identification, and initiation) impacted my ability to manage my environment. I know how to do the individual tasks, am physically able to do them (or most of them now- I’ve had physical health changes) but am not able to manage them or figure out what needs done, when, how often, and with what urgency. This is not an easy thing for me. So my sister comes over once a week and together we take care of what she helps me identify what needs done next. We generally divide up tasks.
I attend therapy regularly for the anxiety specifically, though for other things too. I practice certain things. In fact, I’m considering volunteering with libervox to practice on my anxiety around phone calls.
However, there are some things that I will not be able to change about how my brain is able to handle things. The need to be okay with that is higher than my need to be 100% independent from my family right now. Without being okay with needing support, things can be a lot worse emotionally. And digging out the ways we are trained to be ashamed of the need for help, and specifically for the types of help based on disability, is really difficult.
We have enough difficulties with the myth of the true rugged individualist, the idea that a person *can* do all things needed to live their lives without any help from anyone else. We have infrastructure to help make travel and transporting good safer, easier, and quicker. Someone else probably grew, raised, or constructed the fiber that your clothing is made from, even if you sew your own, or you would not have time to raise/grow your food, craft your materials, and so on. Even before modern markets, there are very practical reasons why people lived in groups ranging from families (ineffective contraception isn’t the only reason for large families!) to cities. Humans are interdependent- quality of our lives is improved by us supporting each other in various ways. It can be for any number of reasons, and doesn’t require good will for the standard ways that humans for interdependent networks.
What we run up against is the above mentioned concept interacting with diverse realities. Because someone who isn’t disabled has their basic needs supported without additional requests or effort by the community, those supports become effectively invisible to that person. But when those of us who have a different set of needs shows up, the additional support seems “special” even when it is meeting less of the individual’s needs than a non-disabled person usually gets. This makes people uncomfortable in other ways, such as making people think critically about cultural ideas that they operate under. The practical result often ends up being that people are encouraged not to find the supports that work best for them and not develop skills they are ready for, but to instead push to conform to the number or types of support that a typical non-disabled person might use as much as possible.
Don’t misunderstand, skill development is an important thing for everyone, regardless of disability status, to engage in. Life time learning is a great thing for everyone. But when there’s a push to conform to typicality, the individual’s well being is marginalized. This goes for a wide range of disabilities. I have friends with physical disabilities from childhood have some very upsetting stories about PTs or teachers who aimed to get them to accomplish things their bodies weren’t ready for, and some retain negative body image because of it. Others were pushed to a point where their long term wellness or mobility was neglected for more immediate gains, and have had age related decompensation at an accelerated rate because that push caused long term damage. Thankfully there are people who aren’t like these professionals out there, but there is still a big pressure within our culture to conform.
So when I get questions like this, even assuming (as I do with this particular asker, as I have been in dialogue with them) that they are meaning to be helpful or at least positive, I feel defensive and mildly offended. It’s an emotional reaction, based on being under pressure to conform to certain expectations and being taught that my inability to perfect those expectations is moral failure- for years. Trying to undo the emotional impact of that is very difficult.
Essentially, I have a decent idea at this point of what I’m ready to work on developing, and if I need help figuring out the next step, I’ll ask. Promise.
May 1 is blogging against disableism* day. I had something planned for a while, but I’ve been staring at my computer, unable to bring myself to put together the bits that I wanted to. And that is okay, it really is, because some days that is just how my brain goes.
So instead I’m writing some minis into one post.
I saw a tweet today with one of those titles that enrages me with how misleading it was. It was talking about people who use disability services at the airport under false pretenses. Only, it took until nearly the end of the article for them to specify they meant people who are capable of standing in line but use the complementary chair JUST to get through security. So much of it contained assumptions and sterotypes about what people who use chairs in airports are like or doing. So much of it builds hostility.
I live with a couple of conditions (beyond, obviously, my developmental and MH stuff) that cause chronic pain and variable mobility. Some days, I can move about fine. Some days, I can’t get out of bed for hours. And somedays- more often when I travel- I need my cane for all or part of the day. My activities impact my mobility sometimes, too. If I abuse the advantages of a “good” mobility day, I’m more likely to have a “bad” mobility day the next. If I walk too long a distance (and it’s not always a reliable measurement) for my body that day, there are consequences. Standing for certain periods of time, again variable, have consequences. Sitting for long periods of time also have consequences. And those consequences aren’t always next day consequences. Some are immediate.
My last trip flying was the first one that I took care of myself by asking for help up front. This is after years of having a progressively more difficult time- of having my joints become so inflamed by standing too long or walking too far that I’ve fallen over in strange airports out of pain; of creeping slowly along, last person to make it to the baggage carousel because if I was going to make it that far I would need to stop a couple of times to sit and massage my joints; Of falling down escalators because even though I knew I was disoriented and thought I might have a cataplexy issue (or joint fail issue if we are keeping in the body impacting mobility theme- I’ve fallen from both) I either couldn’t find the elevator on my own or it was labeled in a way that made it unfriendly to use unless you were accompanied or with children. I spent years needing more and more help, but not getting it.
Why? Well, because people are jerks about people needing only part time assistance. Because people assume that if you can stand long enough for the back scatter machine (which tends to be less of a hassle for a number of reasons than the metal detector for me) or to put your stuff on the belt that you dont’ “really” need it. Or if you can make it down the jet bridge- which often isn’t super long, often has railings, and has seating on either end- on foot that you are cheating by using assistance the rest of your trip. This last trip, I even got negative responses from one of the helper people at Hartford airport- they saw a fat chick who is young and can, with a cane, hobble up and down the jet bridge, and treated me differently than the visually fragile elderly woman who was also being assisted. And heaven forbid I not seem miserable.
Articles that don’t come out and say, “people legitimately need these things, and you can’t guess it based on looking at them” when they talk about this sort of thing? Make it harder for people who do need it to ask, especially if they don’t meet the stereotype- or meet the wrong ones.
April, the month that just ended, was Autism acceptance month. I had intended to write for 5 or 6 places. Instead I got out a quick post here, an urgent post as well, and one for ASAN’s Autism Acceptance Month website. I couldn’t pull my brain together enough to submit to TPGA‘s run of guest posts. I couldn’t get something written for here and for Paula’s Autism Acceptance Month blog around. There were several flash blogs that happened, and I was unable to get the words in the right order for any of them. Yesterday there was one for Autism Positivity, and I was only able to push out a poem that I still haven’t decided if I’ll make public or not. I’ll know by tomorrow.
When you are Autistic, April really can be the cruelest month. There is a muddling of stereotypes designed to describe us not as we are, but as forces in the lives of others. For all the efforts we put into those things that can bring our community together, there is a relentless noise in opposition.
For me, April was as confusing and barren feeling as a modernist landscape, a wasteland. The metaphorical shell I built in defense became an echo chamber of self doubt, the well of inspiration barren in the ensuing drought. I tried to spit it all out into words the only way I can when prose becomes a foreign language, through poetry where stating images and not needing to make sense to another person can be powerful. But in the places that I wanted to share, I had little to go around.
As the month drew to a close, internalized oppression reiterated words I heard as a child: “You will never do, will never be, will never become.” But I think they are always echoing there, waiting until I must close down taking in out of desperate self preservation, avoidance of rage. Some things said echo on our souls.
There are horrible, scary things in our world. Today a link was passed around, about a child, aged 6, with disabilities who had been shut in a cage and left to urinate and defecate on himself. What his parents did is horrible, and inexcusable and sadly not a new story. I looked at the photo of the (now empty) cage and was reminded eerily of Utica cribs and other things people tried/try to justify with the burden of the caregiver. And it happens over and over…
One part of my family are Grahams, and the motto is “n’oubliez-” Do not forget.
But in sharing it, I had someone make a comment that the parents must be intellectually disabled and should have had the kids taken away a long time ago. But this is not justifiable, not to me, not any more than any other things. Additionally, the parents were never identified as having any sort of disability, so the comment was made purely on the basis of bias. The horribleness, the evilness that we see when someone treats someone in their care the way that these parents treated their child? That has NOTHING to do with any disability- including Intellectual and Mental Health ones- that the perpetrator might have. Even were there complications, it would not be the reason, and assuming that they are disabled in some way is not ok. (Especially when in the same thread you wax poetic about how the child is especially defenseless because of their disability.)
As a friend might say, you can’t fight ableism with ableism.
I deleted the comment, and for a brief moment was glad that it was on my wall, where it was in my power to do so. But as soon as I had done so, I remembered. That stuff is still out there- and in places where my delete button has no power.
*Disableism- in the UK, certain terms aren’t constructed the same way as in the US. What USAians call “ableism” is therefore called “disableism” for some UK people. (This is similar to how in the UK you protest for something, whereas in the US the word protest is commonly used to mean protest against something.)
Coming into the neurodiversity movement, there are some terms that a new person might not be familiar with. I’ve been seeing a lot of questions about some of them, and some misunderstandings about them as well, so it is perhaps time for writing something on these terms.
If you are reading this blog, I’m assuming that you know what Autistic means in a general way. Some of you might still hold some misconceptions about autistic life, but I believe that to be a part of the learning process. You are reading Autistic voices either here or on the blogs of other Autistics, hopefully learning from it, and that is what matters.
You’ll notice that I use “autistic” rather than “person with autism” throughout. This is intentional. The basic idea is that my being is autistic- the patterns my brain form thoughts in, the essentials of the way I perceive and learn from the world are autistic. Autisticness is, for me and many others, an essential part of what makes me, me. Saying I am “with” autism denies this reality.
There are many brilliant writers who have addressed Autistic vs person first language in more depth. Jim Sinclair, one of the Autistic community’s elders, wrote a piece in 1999 on the issue which you can read on Cafe Mom. Many others have echoed and expanded upon Jim’s thoughts since then. Lydia over at Autistic Hoya has written a number of posts on identity first language vs person first, including “The Significance of Semantics: Person-First Language: Why It Matters” which ends with a list of links to other writers on the issue.
Some people’s constructions of how they phrase their identity are very personal, others political, and a good number both. I have multiple disabilities, and have a mixture of phrasing for myself. My own preferred construction is “Autistic with anxiety/chronic pain/etc.” When I expand that beyond ability it gets more complex, but I will leave it at this because eventually listing every part of my identity, regardless of relevance, becomes a metaphorical rabbit’s hole.
Allistic, on the other hand, means “non-autistic.” (Some people use “neurotypical” this way, but I”ll get to why I disagree with that usage in a moment.) That is all it means. It doesn’t mean someone is intrinsically better or worse, and it doesn’t indicate ally-hood or opponent-hood. It just means that someone is not autistic.
Allistic is a term that members of the autistic community came up with. While the earliest mention I can find (Zefram, Fysh.org, 2003) is constructed to work in a parody, the word construction makes a lot of sense. So much so, in fact, that Zefram’s work isn’t known to many community members now using the term. In Zefram’s postscript, it is explained that the construction is based on the way that the word “autistic” is constructed:
The word “allism”, invented for this article, is intended to precisely complement “autism”.
It is based on the Greek word “allos”, meaning ”other”, just as “autos” (in “autism”) means
This explanation of “allistic”‘s construction continues to be in use. As some might note, the relative constructions of “autistic” and “allistic” are not dissimilar to the relationship between the words “transgender” and “cisgender.” Even if the alternative was developed to suit the needs of politically charged parody, allistic is linguistically a more accurate term than some of the alternatives.
Neurotypical is often used interchangeable with allistic, but I would argue that it isn’t actually interchangeable. Neurotypical is short for “neurologically typical”- within the typical range for human neurology. Obviously it wouldn’t make sense to say that someone with definitively atypical neurology was neurologically typical just because their atypicality wasn’t that they autistic. Indeed, the Neurotypical/neurodiverse terminology has been adopted by certain segments of the Mental Health consumers/survivors communities for this very reason.
On-going usage aside, from what I recall the initial usage was one that is synonymous with the current “allistic.” However, between the acceptance of autistic cousins (those who aren’t autistic but who have similarities, including those with ADHD) and the penetration of the term beyond the initial communities it swiftly became used more diversely. Eventually, the more diverse (and in my mind accurate) usage meant that a more accurate term for non-autistic was needed. (Which brings us back to Allistic!)
Neurodiverse can have two meanings depending on what it is talking about. When referring to individuals, it simply means that the individual(s) in question have neurologies that are neurologically atypical. AKA, that they aren’t neurotypical. Generally speaking this usage is not used to just talk about Autistics, but is inclusive of other people whose neurology is atypical.
When discussing a population sample, though, it can mean that the neurologies represented are diverse. In this usage, the people in question include more than one type of neurology, and may even include members with individually typical neurology in some instances. This is the less common of the two usages that I’ve seen, though.
I hope that this was useful. For those interested in more information about the origins of certain aspects of autistic culture, I recommend you read Jim Sinclair’s History of ANI, which documents the early days of the autistic culture movement through the establishment of Autreat.
Personal note: I’ve been a bit distracted so far this month and have had issues coming up with something to write for here- while at the same time, preparing for putting things out elsewhere later this month. That I haven’t done much writing here so far this April hasn’t sat well with me, so I figured it was time to do another terminology type post. This isn’t the best post I’ve written, but it is what I have for you today.