Tag Archives: neurodiversity

Other things I have learned….

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It is important to draw upon my strengths, and channel them into working around my weaknesses.

I have realized that a LOT of my difficulties in communicating, daily life, anything really….

….have so much to do with that I was trying SO HARD to express myself in ways that whatever group I was in expressed themselves.   As someone who spends a lot of time navigating different circles, and am very empathic, I have a habit of losing myself in the process of relating on a deep level to those around me.   It’s been all or nothing.   Either I continue to hold others’ pain in my body and memory as I continue to move about life….every single day, thinking of every person I’ve ever met, and feeling all those emotions at once….or it gets so overwhelming that I break down, and hide in my mind.

I have an active imagination, to say the least….escapism has become an art form

There is balance to be found.

I can communicate to verbal thinkers through poetic language, helping them to imagine what I imagine.   I can communicate through visual and creative media entirely……through my own art, through video, through music……I can speak in lolcatz and bitstrips.   What’s really surprising to me is that when I DO draw on my own strengths in this way……it reaches people who are the opposite of me even better than when I tried to speak their own language.

I can communicate with people who are from different generations and political and religious and geographic cultures by connecting around what, even if it’s just one thing, that we DO share….and allow others’ to speak for THEMSELVES as I want to be allowed to do as well.  I don’t HAVE to do things that I’m not good at, because there is enough that I AM good at to be able to compensate and function in the world anyway….so long as I focus on that and that only

……I feel like such a huge weight has been lifted from my shoulders, and I’m falling back into myself.   I don’t have to hide anymore.   Because I know I have a tribes, even if we’re not all always in the same physical location at the same time.   Maybe sometimes hermitting is necessary to figure such things out.   I can seek knowledge and company, synthesize it all, and then (when I’m ready)….go out and apply it to the world

Loud Hands Project:

Intense World Theory:   http://seventhvoice.wordpress.com/2013/11/16/new-study-finds-that-individuals-with-aspergers-syndrome-dont-lack-empathy-in-fact-if-anything-they-empathize-too-much/

 

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The Internet, identity, and community

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I have decided to process my changing relationship with and thoughts about the Internet (social networking/blogging in particular) over the years…  from being outright phobic of it in high school (2000-2004), to minimal email and LJ and later Facebook use in early college (at the time, for the sole purpose of coordinating local in-person social gatherings), to using blogging and Facebook for everything from activism, to learning new things, to keeping in touch with my communities that since I was 24 or so, have spread out across the globe.  Since I was not one who grew up with the Internet (like…the vast majority of other generation Y and Z-ers in developed countries), I have been able to observe how regular exposure to the Internet starting in young adulthood ultimately changed my thought processes, and consequently my entire identity and the way I interact with others now even offline.  Some of this is for the better, some is for the worst, but ultimately, it is what it is either way.

This blog post will go into all of that, and also how I’ve observed advancements in technology impacting and shaping society at-large (again, for better or worse), since the mid-80s when I was born.  I still have my fears and concerns, to be sure, but ultimately, particularly having grown up in the digital decade of the 90s, I’ve come to realize and accept and even be fascinating by all the ways technology and my identity have been inseparable forces.  Warning though:  this blog post will surely be one of the longest I’ve ever written, and possibly will ever write…

I got on the Internet bandwagon late, having my only significant exposure be a college email address (because it was mandatory to have and regularly check one) until…2005 I think? At such point I was first exposed to LJ, and shortly thereafter to Facebook…and it all went downhill from there.  😉  I started socializing in-person and doing my hobbies and taking care of myself less, and so my grades started going down, and all of this meant disconnecting just a little bit at a time with the world around me and sinking deeper and deeper into my own head. This was a hit to my sanity, and lacking sanity ultimately grew to lacking the capacity to do anything but surf the web and watch TV. Which of course became a vicious cycle.

…but it’s a little more complicated than that. Obviously, there must have been reasons why I was drawn so much to it in the first place (aside from that it is literally impossible to just avoid the Internet completely today, in our culture. I’ve been told time and time again how this would put me at a distinct disadvantage, not only socially but intellectually and professionally as well, not to mention keeping me out of the loop of the activist causes I try to stay involved in). And there are also simultaneously reasons why I find it so challenging and frustrating, other than just resenting technology for my lack of willpower over it (and consequently often resenting the hell out of having to grow up in the information age).

Pros of the Internet

~Community: The Internet allows me (and other freaks of various stripes) to more easily find others I can relate to about certain, fairly niche interests and traits that may be geographically spread out because of this. It can be pretty hard depending on where you live, for instance, to find a large group of Pagans all in one physical location (nevermind Pagans who are also bisexual and polyamorous…this is the topic of a LiveJournal community I’m a member of). It can also be hard to find other people with the same disabilities as you, nevermind people who take pride in these disabilities (The Icarus Project, though it now has in-person meetings in various cities across the world, was originally born of a forum. And through The Icarus Project, I also discovered the disability rights and autism pride movements). Seeing these traits reflected back at me makes me feel just a little less lonely, and a little less strange, gives me models to guide the development of my identity, and a language with which to process and discuss all this. Also obviously, social networking is a great way to keep in touch with friends you already knew in-person after one or both of you move far away. (Which seems to happen a lot in my circles…maybe it has to do with my age? Dunno.)

~Personal growth:  By its very nature, blogging encourages being verbally reflective. I’ve always been reflective (well, I guess a better word for it in my adolescence and childhood would be aware, in a more intuitive and less direct way). But my natural way of processing things internally is nonverbal: images, sounds, instincts, memories, emotions, textures…anything but words. Pushing myself to put my thoughts to words on LJ (on my own time, with no pressure to make it high-quality or on a particular topic), not only helped me to become a much better writer (helpful in its own right in a myriad of ways), but it changed my thought patterns. I would start thinking in words in preparation of an entry, rather than “translate” while writing as I did in the beginning. Then I started having an internal monologue even when I wasn’t planning on posting anything.

I have to say that I still very strongly believe that words are not the only valid method of communication, either internally or externally, no matter your age (despite that it’s considered “normal” to begin development of a verbal inner monologue around age six, I say fuck the concept of “normal”). I very much value my intuition and visual awareness and empathy, all of which initially developed in lieu of inner monologuing in the traditional sense. Still, having ease with words is obviously helpful, seeing as words are the primary method of communication and interpretation for many adolescents and adults in this society. It’s also useful to have ease with more than one method of communication and processing (or as I like to think of it, being “bilingual” in a sense), to have flexibility and adeptness in more types of situations. I’m still intuitive and observant and empathic, and I still have a strong aesthetic sense. Words didn’t make these traits disappear. But now I can also articulately explain myself to others, without my thoughts being lost in translation. I can also more directly explain myself to myself at times: while nonverbal thought can provide me with a general awareness of things, it doesn’t always provide me with a clear explanation of that awareness and where it’s coming from. Having the combination of the two types of processing allows me to go deeper with my thoughts, to be more acutely aware of myself and the world around me, and to talk myself through applying that awareness to external situations.

Then there’s Facebook, which serves very different purposes than LiveJournal or WordPress. By the time Facebook came out with features beyond just looking up and contacting who’s in your college classes and clubs (my first college was one of the first colleges it came to when back when it was college-only), I had already developed my verbal skills through LiveJournal. What Facebook helped me develop was my wit, assertiveness, and confidence. I think it’s to some extent true for many people that our social network selves are a reflection of our ideal selves; how we see ourselves internally, and how we wish the world would see us too. This is because we can edit online, but can’t as much offline: we actively choose what we want to present to the world, and what we want to hide, and can always edit or delete later if we impulsively post something we regret.

I felt safe to share thoughts and opinions on Facebook that I would be too afraid to share IRL, because I was sure I would mess it up somehow and embarrass myself without having all the time in the world to think it through first. And like what happened with LiveJournal, my status update style eventually started blending with my thinking style, which consequently affected my behavior. My Facebook persona is gradually becoming closer and closer to my offline persona (or in other words: Facebook is helping me to actualize my ideal self). If my Facebook persona can be a bit opinionated and cocky sometimes (this much I admit), my softer and more introspective blogging persona balances it out.

~Knowledge:  As I said, while I’ve developed the capacity to think in words over time, it is not my natural or primary form of processing. My thoughts are also nonlinear: instead, I’m stream-of-consciousness and free-associative (as anyone who’s interacted much with me would know). Between these two qualities, I had trouble with reading comprehension from around age 14-21, and I attribute this in no small part to the style and format of most YA and adult books. There are rarely many pictures (if there are any at all). The font is generally uninteresting and only one size, and there is also only one font throughout. Rarely is there interesting formatting, such as bolding key points, colorful text, or an interesting layout of the text. Chapters are presented in a very linear way, with the book intended to be read from cover to cover at some point (while you can take as long as you want to finish, you’d still generally be confused if you read half of chapter 12 before turning to the end of chapter 3 before finishing with chapter 7). This arrangement does not work with my learning style at all, and because I wasn’t yet really aware of other formats for information, I assumed I was simply an idiot. (And I also admittedly was pretty clueless about a lot of things, as compared to most in my age group.)

Since then, I’ve discovered zines and nonfiction graphic novels and documentaries, which have all been empowering and enlightening in their own right, but right now I’m here to talk about the Internet. Obviously, the Internet is much more visual and interactive than books. It’s a multi-media smorgasbord: a single article may include pictures, hyperlinks to other articles, bolding and colors and a fascinating design, background music or sound, AND an embedded video. As much as I hate how little willpower I have over my web-surfing, I can’t deny that I learn a ton (more than I ever learned from classes or trips to the library) by clicking from one article to the next on Wikipedia or WordPress. I can finally be in charge of my own learning, and don’t have to wait around for an expert to explain things to me. I feel like I can hold my own now in conversations with my very intelligent friends, on topics that I previously feared: like philosophy and politics and current events.

~Activism: I always wanted to be an activist (I played “protest Barbie” as a little girl…if I remember correctly, she mostly protested the injustice of bedtimes and having to eat vegetables.) But for awhile, I had no idea how or where to start. This is related to the previous topic: I had a general feeling of dissatisfaction with many aspects of society, but with little awareness of where exactly that dissatisfaction was coming from, or how the larger world works, or how activism works (and has in the past), it was a fruitless goal. Activism has changed a lot over time: today, most movements utilize the Internet in some way. For awhile, I followed discussions on these topics without actively participating at all, but that allowed me to learn what I needed to learn about the causes. It also gave me awareness of different methods that can be effective, both online and off. Finally, I started participating more actively, in my own small way. I consider educating people via social networking to be a form of activism (and I am always open to questions about my posts), and I also started this blog about 7 months ago. While I’ve done some offline activism in the areas of environmentalism and gay rights, unfortunately the stigma of mental illness is such that I don’t feel safe outing myself to the general public, so in that area social networking/blogging is all I have (and all I may ever have).

~Marketing and promotion: I don’t particularly want to sell my art yet, but I do someday (when I have more time and skill), and regardless I certainly enjoy sharing it. Shoving my actual art in people’s faces at random, in person, would be…awkward, not to mention rude. The aforementioned currently-low technical skill prevents me from having anything on display. So I have a DeviantArt account, as well as a Facebook album devoted to my art and crafts.

Also, I’ve yet to figure out a good way to organize and promote large social events other than Facebook. How did people even do this before Facebook? (Probably with difficulty.) I haven’t actually done this sort of thing much in years (my stamina for it has gone downhill as I’ve aged and health has worsened), but at the time (like, age 19-24), it was one of my favorite hobbies. There were few things I found so exciting and fulfilling as seeing the smiles on people’s faces as they enjoyed an event I had planned and prepared for.

Cons of the Internet

To some extent, I see a lot of the benefits I talked about as compensation for problems (both personal and societal) caused by the Internet, which of course would never need to compensated for if the problems didn’t exist in the first place. I know this is going to sound like a grumpy old lady waving her cane and yelling “In my day, people talked to each other on landlines!”, but I think it all still needs to be said. (Well rather, I still need to hear myself say it. Otherwise, I’ll never be motivated enough, never try hard enough to find the balance that I wantneed).

Yes!, the Internet brings people together who might not otherwise come together. But that wouldn’t be quite as necessary if people weren’t isolated to begin with, and the Internet can exacerbate isolation (again, both personal and societal). I know, actually, that I’m not alone in this. I’ve talked about it with friends and family, and it’s been the topic of movies and TV episodes: when there is the instant gratification of talking to someone online, there is less inclination to put in the annoying logistics of arranging to see (or meet) people in person. Which means that fewer and fewer people are leaving time and energy for it, and those who do still might leave less time and energy for it than they otherwise would have.

For me, it does not matter how much time I spend instant messaging or Skyping or commenting or whatever else: I absolutely need to have in-person socializing be the core of my relationships, or I completely crash emotionally to the point of not being able to do much of anything. It also doesn’t feed me nearly as much or as well (and consequently, any satisfaction I do get doesn’t last as long), if in-person social time is spent looking at devices. It’s really hard, as an individual with what seem to me to be freakish social preferences (in the context of the era and my age), to get very far in my quest to reduce screentime, without succumbing to pressure. For instance, I can’t count how many times a conversation like this has happened…

Kit: Hey, I haven’t seen you in awhile! I miss you! We should hang out! Yay!

Friend: Yes! I miss you too! Hanging out is awesome! But I keep inviting you to things, and you keep not coming to them!

Kit: Wait, what? I haven’t heard from you in months. When did you invite me to something?? What did you invite me to??

Friend: I blogged about [X event] and [Y event]!

Kit: …oh.

In the case of bringing together geographically spread out niche groups, this is an absolutely legitimate need and use. I feel, though, that it is only part of the picture. Diversity in friend groups is wonderful! The problem is, there are many types of people who just aren’t accepted by mainstream society, and are often treated very badly. This is what’s concerning and alarming, not-so-much that these people can live far apart from each other. If they could be accepted, genuinely and with open arms, into diverse local communities (and if such local communities were actually communities in every sense of the word), I feel like there wouldn’t be as much of a need for forums. (Not that they would ever become obsolete, but that they wouldn’t be the be-all-end-all.) For me, anyway, forums are band-aids. While daydreaming about lofty ideals doesn’t necessarily do anything by itself, daydreams are the root of goals, which are the root of plans, which are the root of action.

There are, of course, other ways to gain knowledge, too. While the Internet has allowed me to “compensate” for my reading comprehension difficulties in a similar manner, and even improve upon my reading ability, Wikipedia and WordPress and links on Facebook and the like are somewhat of a crutch for me. After awhile, I stopped bothering to even try to like books. I didn’t realize that I could. I didn’t realize that there are books for adults, for instance, with fanciful typeface, with pictures, with colors, with accompanying audio or video (or both!), with nonlinear presentation, with almost anything I love about reading on the Internet. I don’t actually hate to read; I was just looking in the wrong places all my life (though with no help whatsoever from certain authority figures, who only encouraged me to read a certain type of book, and told me (explicitly or implicitly) that I wasn’t good enough if I couldn’t understand it).

I also want to add that factual information is not the only thing to be learned: abstract concepts are also important, and skills, and traits, and values, and I’m sure I could think of more if I tried. In my mind, all of these things are equally important (to society as a whole, though individuals may value some more than others in their own life). Skills, traits, and values especially are usually best learned through experience. Some things can only be learned through experience, like what it’s actually like to visit or live in a foreign country.

I guess this thought process comes from my teaching strategy: I think about whole children and all their sides and needs (social, emotional, physical, cognitive, creative, etc) as completely intertwined, and although this is common in most preschool programs, I wish it was like this for adults too! I have a hard time compartmentalizing, for instance, my mind from my body, and I have an equally hard time figuring out why I even should. (A study session will only fully settle into my brain when I go for a walk, or dance around the room (often while actively studying)). I know that not everyone is like this (in fact, maybe I’m an oddity here), and that’s ok!, but I feel like with the strong influence of the Internet (and to some extent TV as well) on culture, there is this underlying pressure for everyone to become disembodied floating heads. Also, although surfing can be nonlinear as I said, and contain multi-media elements, communication online remains mostly verbal. Because of the interplay I’ve discussed between virtual communication, thought processes, and in-person communication, this ostracizes people with minds like mine (that will probably never be primarily verbal) even further than we already were. It also further depreciates alternative communication and processing styles in general. There are benefits and shortcomings to all of the myriad methods of communicating, so societally, we need to make sure we aren’t inadvertently eradicating any through a shortage of practice.

Yet another reason why I keep coming back to my screens despite our love-hate relationship: it is an escape. I don’t feel too bad about that (and even forgot to talk about it!) because it’s so universal. Everyone needs an escape of some kind, from time to time at least. Hey, I’m only human, and sometimes all it takes to get me through a frustrating day is looking at pictures of baby animals on Zooborns. But playing with my pet rat is infinitely more satisfying than scrolling Zooborns, so when I have access to him (when I’m home), I try to do that instead. I think this concept can be extended to…a lot of things. The more I am online, of course, the less I am offline. And as much as the physical world sometimes angers or scares or frustrates me, there are so many great things about it, too. So many things I want to experience more, with all of my senses, and time is finite. It seems to pass more quickly when I’m looking at a screen.

This is also where activism can come in, and like with everything else, it of course has its offline counterparts. If something is really wrong, why not try to change it? Activism has been around long before Tumblr, Twitter, Facebook, blogs. I’m still very much learning how it works, how it has worked, but at the very least I know that social networking alone cannot solve all problems. I also know that problems have been solved in many other ways before, and continue to be. For my part, I’m most interested in the arts and local community (and community arts) as agents for change. I’m also interested in answering questions (no matter how ridiculous), here and there and everywhere, and pointing people to helpful resources.

This is all a sort of chicken-or-the-egg thing that, frankly, fascinates me: does the world create the Internet, or does the Internet create the world? Personally, I think it’s both, and though I use phrases like “in real life” for lack of a better way of explaining things, I don’t think that the line between the physical and virtual worlds is as black-and-white as it may seem. Both worlds affect and reflect the other. The way I see it, the Internet is humanity in technicolor: every sentence, every interaction, every action fine-tuned and ballooned and on fast forward. This brings with it the very best of society, as well as the very worst.

I wonder, sometimes (oftentimes), why everything needs to be fast, shiny, new? Stagnation isn’t good, either: individual stories, as well as larger global ones, need to progress in order for societies and the individuals that they consist of to continue to grow and improve. But change solely for the sake of change doesn’t necessarily make any sense (and neither, for that matter, does growth for the sake of growth), and something very special may be lost in the process. Some things need to change, and others don’t, and which is which is not something I’ll ever be able to know with any certainty. I can’t predict the future, nobody can. People could argue about this question for decades. (They already have.)

But like it or not, the Internet is one change that is here to stay. The best (and only) thing I can do is adapt to its towering presence, and learn how and when to use it, and alternatives for when I don’t want to use it. This issue is, at its core, difficulty dealing with change: in this case, huge and permanent and global change, that I have only just begun to process. Because like with any other change (big or small), if I try to hide from it in its entirety, I am only setting myself up for failure.

Aside

Content warnings: Disney Frozen spoilers. Also possible triggers: mental illness, isolation, oppression, stigma, emotional abuse, childhood trauma, problems in Western psychiatry, passing mentions of self-harm and death.

I absolutely love the movie Frozen.

In case you haven’t seen it and have somehow managed to avoid being bombarded by ads and YouTube videos and Buzzfeed articles and conversations… Frozen is a computer animated musical about a young woman with magical powers that allow her to create and control ice and snow.  It tells the story of her journey in learning to control her powers, and also focuses on the relationship between her and her younger sister Anna (who does not have any supernatural abilities herself). Now if you’re wondering why the heck a review of a children’s movie is on a blog about radical mental health and neurodiversity, know that this is not actually a movie review.  I’m not here to discuss my thoughts on the movie as a whole, but to discuss how the main character Elsa speaks very strongly to me as another person who lives outside the norm (in my case because of my madness, neurodivergence, and disabilities).  The main reason actually why I love this movie so much is not because it is enjoyable to watch (although it is), or because it has a particularly groundbreaking message (although it does have a few lovely and important morals), but because pretty much everyone I know who’s seen it has expressed being able to relate to at least one of the characters. When media can do that I think it really says something about its ability to portray humanity in a nuanced way, even in fantastical settings.

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(Elsa, left, with her sister Anna, right)

I do not have any magical powers (er…in a literal sense, though as a Pagan I do believe in magic more metaphorically).  At the core though, Frozen is a story about the challenges and dangers of being different in a world that often reacts to differences with fear and cruelty.  It is also a story about learning to be and love yourself anyway, with the help of the caring and brave people who go against the grain and love you for who you are.

The radical mental health group Icarus Project, of which I am a part and which played a crucial role in helping me develop the views that inform this blog, calls mental illness or madness a dangerous gift.  The name Icarus comes from the Greek mythology of Icarus, whose wax wings allowed him to fly but flying too close to the sun melted the wings, causing his death.  While some disagree, I don’t think calling madness a dangerous gift (or radical mental health views overall) minimizes or denies the very real pain and challenges of madness, and the risks that these challenges can bring. Icarus Project may call it a gift but acknowledges the inherent danger of not being able to effectively tend to that gift.  The main difference between radical and mainstream Western mental health beliefs is not in whether or not suffering exists at all, but in how they recommend viewing and coping with suffering.

As a whole, mainstream Western mental health views madness as a health issue, an illness, so like other medical issues the goal is ultimately to find a cure, or ways to manage the symptoms if the illness is chronic and cannot be cured.  Radical mental health on the other hand views cure not only as probably impossible, but undesirable and possibly even dangerous in itself.  If mad and neurodivergent people are not inferior but are simply different, then suggesting we change the very core of who we are is on par with saying the world would be better off without people like us in it. Also a lot of people who attempt the cure approach end up with new symptoms or their symptoms become even more severe than before.  Denying one’s true self at all times is not only frustrating and difficult, but especially for people who are emotionally sensitive already, can be very harmful even to the point of causing permanent damage.  Even mainstream psychology recognizes this to an extent (Freud for instance famously theorized how repression is the root of many neuroses).  Yet mainstream psychology still views madness almost as an external object, like a suit of armor, that one can and should learn to remove, rather than an integral aspect of self such as the heart that would cause death if removed.  Radical mental health does see madness as integral in many cases (entirely situational depression or anxiety aside), and with that in mind the ultimate goal for healing is to learn to tend to and channel it effectively.  This self-care and channeling is important and necessary.  Radical mental health does not advocate unconditional self-acceptance to the point of doing nothing at all toward personal development, but rather believes in focusing growth and healing efforts on approaches that still fully acknowledge and avoid vilifying madness.

The choice of the word “vilify” is very purposeful. Elsa was originally intended as a villain. Disney ultimately decided to go in a different direction with the character, portraying her as flawed but talented and kind-hearted, and telling the story from her and Anna’s points of view (who in addition to being Elsa’s sister, is a devoted friend and advocate from the start).  I am very happy they did take this route instead, as it is one of the only works of children’s media (particularly Disney) I can think of that realistically portrays the complex, confusing, nuanced ways “good” and “evil” actually work in the real world. Which is to say, the real “villains” of the world are often actually confused heroes, or people with good intentions but without the skills or resources to carry them out effectively, people who feel incredibly guilty about the harm they cause others, or perhaps people who are actually incredibly harmful but think they are being heroic. (The latter could describe terrorists, bigots, abusers, some politicians, and some religious extremists, but fortunately does not describe Elsa.)

In our world the people who the media and history call villains are not necessarily villains at all. Some are (to the extent that fairy tale concepts can be applied to reality at all), and this is not to be denied or ignored. Many of them though are simply people with dangerous gifts; gifts that perhaps the rest of the world has never seen before, or have only seen the curse but not the blessing. Humans have a natural inclination to react to what they don’t understand with fear. Fear, in some people, can lead to judgment and assumptions, which can ultimately lead to cruelty. Even the person with the dangerous gift themself may be afraid of it if they don’t fully understand it, or if they have internalized the fear and hatred of others.

So they might hide from the world, to ostensibly protect not only themselves but those they love from their worst.

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This image, of Elsa hiding in her room, ashamed that her powers are completely out of control, as her sister bangs on the door begging for company from the friend she once knew… This scene honestly made me cry and haunted me for days.  (Source:  http://disney-frozen-please.tumblr.com/post/77063728159/do-you-wanna-build-a-snowman, also this but major spoilers:  

I have had so many people ask for or even demand my attention, to see me again when I am isolating in the midst of an episode. I have heard, over and over, that I am missed, or that they miss the cheerful person I used to be. This can make me feel loved but it is also heartbreaking, since I miss them and miss the productive, healthy, happy me just as much. I miss building snowmen. I miss spending time with the ones I love. But instincts are hard to break. When I was little, I was taught (by my parents, teachers, bullies, everyone really), that emotions cause nothing but problems and so are to be hidden, denied, destroyed at all costs. I was taught to carry bottled water and cotton balls everywhere I went, so I could wash my face in a dark corner if I cried, and nobody would ever know. I was taught to leave the comfort of home as little as possible. I was taught to be careful and hypervigilant, always alert, never taking unnecessary risks, never showing my vulnerability, perpetually being whoever and whatever others wanted me to be.

This is naturally a recipe for disaster. Eventually, the facade will break and the coping strategies will crumble.

Elsa and Anna do come to terms with Elsa’s powers, as Elsa learns to use them effectively and for good. (Ok, it’s a Disney children’s cartoon…I swear it’s not entirely depressing). But the catalyst for this is…kind of odd. Maybe not for reality, but for what you might expect from fantasy. She basically just throws her hands in the air and says “fuck that shit, I’m done. I have no more fucks to give.” Nothing particularly dramatic or action-packed happens to cause this change of heart, just…realizing the game is pointless and shitty and a lost cause anyway.

The hit song Let it Go could easily be renamed I Have No More Fucks to Give.

I can’t pass as “normal” anymore, not even if I tried. It’s just too exhausting, and my exhaustion and frustration and difficulty is palpable. I did for a long, long time (over twenty years), but I guess I burnt out. When this happened, I did need to mourn. I needed to mourn my “normal” life. I needed to mourn my passing privilege…having my basic humanity respected most of the time. Being your true self, openly and unapologetically, is not without its challenges and risks, and sometimes and for some people these are just too much. In middle school for instance, the mask was absolutely necessary, a key survival strategy. In adult life, I still need it at job interviews and formal functions (which can be a lot like middle school, with the gossip and the “cool kid” and “freak” tables). Also honestly, the hiding was never really about fear of the world or an actual desire to be alone. It was mostly about fear that others wouldn’t be able to handle all of me, that I would somehow hurt or offend or scare them if they knew who I really am.  Sometimes, that does happen…I cannot predict how people will react to coming out and showing my true colors, flaws and all. Some react with judgment or even cruelty, some flee, but others become my Anna’s….  genuine supporters who stand by me no matter what, and could never do this so effectively without knowing who truly I am and what kind of support I need.

Besides, the freak table never bothered me anyway. It’s where the fun stuff happens. It’s where I’m at peace and free. With all I’ve lost (hope of normalcy, respectful treatment from strangers), I can honestly say it is worth it. I no longer have to devote so much of my energy to maintaining the facade that I have little energy left for anything else. I can now devote that energy more fully to such goals as honing my abilities, and loving and being loved. I have also realized over time (as Elsa does), that the place in my soul that is the source of my intensity and unpredictability, is also the source of many wonderful qualities and abilities, such as creativity and passion and compassion and wisdom. I cannot rid myself of the negative without losing the positive along with it, so rather than continue to try to no avail, I focus instead on finding outlets and support and getting to know myself anew whenever I evolve.

“Let it go, let it go,

And I’ll rise like the break of dawn

Let it go, let it go

That perfect girl is gone.

Here I stand, in the light of day!

Let the storm rage on…

The cold never bothered me anyway”


On Disney’s “Frozen” and disability, passing, and self-love

The social model of disability and person-first vs identity-first language

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First, a quick recap of some terminology I often use here…

Person-first language:  “person with autism”, “she has autism”, “she has a disability”

Identity-first language:  “she is autistic”, “she is disabled”

Medical model of disability:  Disabilities are caused by one’s brain or body not functioning properly.

Social model of disability:  While some disabilities and illnesses may be genetic and chronic, it is ableism and accessibility barriers, not the disability or illness itself, that get in the way of functioning.

And just in case…

Ableism:  prejudice and/or poor treatment toward disabled people/people with disabilities or chronic illnesses

I love this article written by a person with mobility impairments who supports identity-first language and the social model:  I am not a “person with a disability”: I am a disabled person

In it, the impact of ableism on disabled people is referred to as being like “disabling a wi-fi connection”:

“Most people look at the word ‘disabled’ and assume it means ‘less able.’  It doesn’t. It means ‘prevented from functioning.’ When I turn the wireless connection off on my computer, I get told that the connection has been ‘disabled’.  Does this mean that my wifi has suddenly become less able or broken? Has my wifi acquired a disability? Of course not. It has been prevented from functioning by an external force. In a very similar way to how I’m disabled by bus drivers that just won’t stop if they see me — a wheelchair user — waiting at the bus stop.

As a person with a mobility impairment I am disabled by steps, stairs, escalators, being denied computer access as I can’t write by hand, inaccessible housing, and so on. To me a flight of stairs without a lift as an alternative is the equivalent of right-clicking me and selecting ‘disable Lisa’.”

Well first of all…that metaphor is not only hilarious but explains a lot.

So does the rest of the article and now I understand identity-first language in a completely different way.

I’m autistic, bipolar, and have cognitive impairments among other things. I am all for the social model but usually call myself a “person with disabilities” nonetheless. I don’t see it as necessarily at odds with the social model, which is how I conceptualize myself too (and it does make me feel more confident than I used to be, since the medical model is just spectacular at destroying self-esteem).

I think that ultimately it is society that disables people, but like this author’s friends who prefer “person with disability”, my challenges would get better but never go away entirely if society were to magically become free of all forms of oppression tomorrow. I have a weird brain and body that cause me to sometimes not be able to get out of bed, or find my left shoe, or remember my phone number, or be able to walk without pain (I’ve tried almost every pain medication there is but they interfere in frustrating ways with my psych meds), or whatever else. Society makes it worse, so much worse, but society doesn’t chain me to my bed or lose my left shoe or make me forget my phone number. My brain does all those things, and will continue to do all of those things forever. I just have to accept that.

That said…  typically, when I hear “disabled” versus “person with disability” arguments, I think that people who find their disability a large part of their identity, say they’re disabled because they can’t or don’t want to separate themselves from that identity. People who perhaps find it secondary to other identities and can pass as non-disabled, or people like myself who can’t always pass but think that ableism isn’t the whole story for them, say “person with disability”.

The explanation of distinguishing between “impairment” and “disability”, that impairments may make some things difficult or impossible but society is what disables people at the end of the day, makes so much sense. This allows identity-first language to be inclusive of people like myself, with chronic genetic conditions.  In fact I might have to reconsider my stance and preferences.

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(Lisa Egan, the author, image courtesy of xojane via ewheeling.  Image description:  a white female wheelchair-user with light brown hair and glasses, outside on a sidewalk.   She wears a light purple sweatshirt and black sweatpants and holds a coffee cup, and her hair is pulled back.  In the background is a black iron fence, a red brick building, and a few bicycles leaning against the fence.)

Aside

“I pledge my commitment to the Blog for Mental Health 2014 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.”  

My identities sometimes seem to contradict each other, which can be really confusing.

For instance, I often grapple with being simultaneously a psychology student working to enter the mental health field, and a radical mental health activist working to end stigma and improve the treatment of mad people by professionals.  (Existential crises:  an occupational hazard of trying to dismantle the very system you’re a part of.)

Sometimes this paradox hurts my brain so much that I become exasperated, and wonder if it’s possible at all.  Depending on how my studies and my activism are going, and which I’m more devoted to at the moment, I might either wonder why the heck I’m studying psychology or why the heck I’m a radical mental health activist.  What did I get myself into???

But although some radical mental health activists are anti-psychiatry, I am not.  Professional mental health treatment has helped me and many people I know.  I think everyone has a right to a self-directed and fulfilling life, and some people need or want professional help getting there.  That is ok, and to be honest, I think demonizing the industry will only serve to further stigmatize those who do choose to seek help.  In allowing for self-direction and autonomy, having a variety of different options available is also key.  What I want to do is make room in the mental health industry for care that is truly compassionate and respectful, viewing all clients as capable of self-direction and assessing their own needs and desires.  In this model, the role of a therapist for instance would be less about giving advice or telling the client their neuroses and what caused them, and more about asking thoughtful questions to encourage reflection and show they’re listening and care.

There are skills I learned in therapy years ago that I still use on a daily basis and can’t imagine living without.  These include DBT skills (Dialectical Behavioral Therapy teaches practical hands-on coping skills that are very useful for tolerating intense emotions, such as squeezing a frozen orange if you’re having a panic attack or disassociating, or drawing on your skin with marker if you have self-harm urges you don’t want to follow through on.)   CBT (Cognitive Behavioral Therapy) teaches how to combat untrue, exaggerated, nasty inner voices of depression or insecurity that say things like “You’re so stupid, you should just give up”.   More processing-oriented approaches, such as expressive therapy and psychodynamic therapy, have given me the time and space I needed to express myself and feel, and through that I gained peace and insight.  (Expressive therapy, as a style of therapy, is distinguished from the field of expressive arts therapy, which involves using any one art form for therapeutic benefits and can come from a variety of different theoretical approaches.  Expressive therapy refers specifically to combining various art forms in therapy that focuses on catharsis and processing, for instance dramatizing a poem or painting to music.)

Though it’s worth noting that my journey hasn’t been (and still isn’t) all sunshine and roses, or else I wouldn’t feel such a need to go into either the field or activism.  Something needs to change.  I have been told that defining aspects of myself that I take pride in, that bring me joy, and that serve important coping and healing purposes, are “symptoms” of my “illness”.  Things like, well, wanting to be an activist in the first place.  And being queer and kinky and polyamorous (yes, professionals really do still say these things about LGBTQ people, all the time actually, despite that homosexuality was removed from the DSM in 1986).  And being Pagan (Paganism is often labeled as a symptom of either psychosis or OCD, only they would call it “magical thinking”).  Yes, psychology and psychiatry can and often do help people heal.  But we can’t ignore the other ways it has been used:  to enable people in power to enforce the status quo, by controlling what is considered “sane” or “insane” by mainstream society.

This is where activism comes in, and where I don’t think that radical mental health and Western psychiatry are necessarily at odds, but rather can be seen as two sides of the same coin.

From the ages of 21-23, I was in a theater troupe that changed my life forever (and quite possibly even saved it).  It was a  troupe of LGBTQ youth, and focused on political and activist theater, with the goal of advocating for LGBTQ rights to high schools and social service agencies.  It started with a boot camp of training:  guerrilla theater, costume and prop design, playwriting, and activism and public speaking.  But to say it was all about training doesn’t do it justice.  We also did a lot of talking, bonding, and processing.  We talked and wrote about what being LGBTQ youth meant to us.  We talked and wrote about what kind of world we wanted to see, and how we might accomplish this.  We talked and wrote about all sorts of things…  things like addiction, poverty and homelessness, suicidality, homophobia and transphobia, gender and sexuality exploration, gender and sexuality theory, intersectionality, kyriarchy, bigotry, social justice, the history of youth activist movements in the United States, our hopes and dreams for the future, and what kinds of artists and activists we wanted to be.  We did improv theater around these discussions, which was videotaped and transcribed, and somehow the transcriptions and the journals and the weeks of laughter and tears came together to produce our original plays.

Some of the places we toured to, we were warned, had high incidences of homophobia and transphobia.  But the audiences were still largely made up of vulnerable youth much like ourselves.  Especially in the Q&A and open discussions that followed each performance,  all of us (both the people in the audience and the people on the stage) were able to recognize our shared humanity, perhaps for the first time.  For my part, I was able to combat some preconceived notions around race and class, and begin to unpack my privileges as a white girl from a middle class family.   How we then chose to react to this, of course, was up to us, and it’s unrealistic to think that a few hours can completely undo a lifetime of messaging and experiences.  Yet for some, it opened a door to consider that people unlike ourselves in one way or another are still people deserving of respect, and who often have more in common with us than we might think, if we only look beyond the surface.

I never felt so empowered in my life.  And though it’s been five years since then, and I could definitely use a brush-up, I can say with certainty that without that experience, I might not have ever become an activist.  I probably would have continued to blame myself for everything bad that ever happened to me, and feel horribly insecure all the time as a result.  It probably never would have truly sunk in the extent to which my trauma, my insecurities, my neuroses, are not only resulting from a chemical imbalance in the brain or poor choices, but rather from a complex interaction between my brain and personal choices and the society in which I live.  A society in which people such as LGBTQ people, people of color, poor people, female-presenting people, the young and the old, people with brains or bodies that are different from the norm, and people of cultural or subcultural or religious minorities, are still often treated as less than human.  A society in which anyone who is different from oneself, in any way, might be looked at as less than human.

Contrast this to my experiences in therapy.  Sure, it sometimes helps me feel better, though often only so long as I stay actively involved.  And at what cost?  Rather than being empowered, it has usually been disempowering.  By its very nature, the therapist is placed in a position of authority over your life and health, which can make it difficult for clients to feel like their accomplishments are their own.  If clients show any difficulty coping with the realities of living in an often cruel and harsh world, they are called “ill” or “disabled”, regardless of if they personally feel this description fits.  Their difficulties are blamed on their brain chemicals, or perhaps traumatic experiences are recognized and validated, but it is still then the client’s responsibility to change themselves and their reactions, rather than the external situation.  This is especially true of large, societal problems.

No matter what happens, life will still always have its ups and downs, so the capacity for resilience is still important.  But regardless of how big of a difference someone ultimately makes, what really matters is that they feel they can.  Even if we’re not talking about global injustice but about a personal goal, like getting a driving license, if someone doesn’t have that basic belief in their capacity to achieve it (regardless of how much time and effort it might take), they probably won’t.  No amount of coping skills or processing or medication will change that.

And if someone’s suffering is truly due to oppression, and not just their brain (as is so often the case)…if nothing is done to address these oppressive systems, no amount of coping skills or processing or medication will truly help them.  This is the sad truth about living in an unjust world.

But there’s still hope.  It doesn’t have to be this way.  I do have hope that society as a whole can and will change, as it has in the past.  But no matter what happens, and even if the pace is so slow that people working for change today never get to see the results of their work, this doesn’t negate their power.  If a suffering person believes that they can and must use their suffering to change the world, so that others don’t have to suffer in the ways they did, and they have ways of gaining the skills and knowledge necessary to do so… they can do almost anything.  Then they just have to remember that whatever help they got along the way to gain these skills and confidence, it was still them who decided to use it to take action, and that’s a major accomplishment.

I’d love to see therapists focus on teaching clients the skills and knowledge they need to follow through on their dreams, both for themselves and for the world.  If the therapist doesn’t posses these skills personally, they can help the client find and access someone who does.  Activism skills, creative skills, communication and relationship skills, time and self management skills, coping skills, the knowledge of how individuals are both affected by and affect the world around them, and how this has happened in the past.  Whatever particular skills they need to accomplish the things they value the most.  Therapists may also need to help remind their clients of the skills and abilities they already have, and access the courage to use them (which necessitates believing that using them to make a difference is even possible).  With all this comes power.

Coming from personal experience…this process not only can change the world (whether in ways big or small), but it is also extremely therapeutic.

~Kit~

Take the Blog for Mental Health pledge:  http://acanvasoftheminds.com/2014/01/07/blog-for-mental-health-2014/

Activism as Therapy

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Trigger warnings:  negativity, negative emotions, suicide, self-injury, controversial opinions

What’s acceptable in this world? What isn’t? What’s healthy, what’s unhealthy?

Something I’ve learned over the years, both from being and interacting with members of marginalized and often vulnerable groups:  every action serves a purpose and meets a need.

Does that mean that every action is equally valid and effective? No, absolutely not. Some actions cause harm to others, which is not ok (though we could debate all day long what “harming others” even means, and if it’s ever ok to harm someone in the short term while helping them or someone else in the long term. I have my opinions, but I’m not going to get into that debate today).  Some actions may harm oneself in the short-term while helping oneself in the long-term, or vice versa, or even do both simultaneously.  Some actions are more or less effective than others in reaching the desired outcome.

But all actions serve a purpose and meet a need.  Regardless of appropriateness or healthfulness (though who decides these things?), if an action is abruptly stopped without being replaced, the need will go unmet.

Consider a young child.  Children are some of the most vulnerable people. They have hardly any power over their own lives.  As such, their caregivers must meet their needs that they don’t yet have the skill or power to meet on their own.  The problem is, the adults in their lives don’t always know what these needs are.

So the child screams, and runs out the door. Or hits, or bites, or knocks over another kid’s toy, or doesn’t finish their vegetables.  An adult may say “stop”, “listen to me”, “don’t do that”, “hands are not for hitting”.  (“Why?” asks the child. “Because I said so,” says the adult.)

Good luck getting a 4-year-old to listen to that reason. But what if they do? Let’s say we have a 4-year-old with exceptional self-control (though of course…who still has only been alive for 4 years. That’s only 4 years of learning all the myriad, complicated, messy rules and skills one needs to be a successful human being in their culture.)  They listen, and stop, without discussion or explanation…and whatever need their actions were screaming out for help with continues to go unmet.  So later, they try something else.  Something which may be even more frustrating, both to themselves and those around them.

A screamer could be asking for attention in the only way they know how in this moment.  They could be hungry, or tired, or frustrated, or angry, or overwhelmed. They might not even know themselves which of these feelings is happening, or what to do about it, and they might not have the words to say “That music is too loud and I have a headache. Can you turn it down?” They might have once had these words, but in the intensity of feelings, the words disappear. We’ve all had moments like this, moments when we’re so depleted that skills we once had are suddenly out of reach. But imagine if you only just learned that skill, and haven’t had the time to perfect and cement it? New skills slip away much more easily.

The adult says stop, so the child does. This child, like most children, is eager to please the grown-ups, the superheroes who are in charge of the world. So the need goes unmet. Their head hurts. This makes them grumpy, so they continue to “act out”. They snap at other children in the daycare center. They walk over to the radio and turn it off, without saying why or asking for permission. Words are still elusive, even moreso now than they were before. “Disobedience”. “Time Out”.

Actions not only meet needs, they are also a language. What does the scream say? Usually, “help!” Or “I’m scared!” or “This is so exciting!” or simply “!!!!!”. To stop the action, without a replacement action or solution, is to take away a voice (whether it’s our own or someone else’s). Voices are necessary for survival.  It’s important to listen to actions, as we would any other language.  What does it mean? Watch and listen. Consider the circumstance, situation, what you know of this person and their needs. Read the body, the face, the hands. These are also language, and give important information. Sometimes, the only way to know for sure is to ask “Do you need help? What help do you need? Is it X?”, but be aware that the answer may not come entirely in words. Words are but one of many ways of communicating.

Grown-ups are not all that different from kids.  We’re all people, just some are taller and some have more experience in living. Different people take longer than others to learn different things.  That’s ok, though it can affect how we act and live.  Adults’ needs are usually more complex and varied than those of children. Adults are usually responsible for meeting their own needs (even if they get help along the way), and for understanding and facing the consequences of their own actions.  But adults still have needs, and these needs must be met.  Adults still sometimes struggle to know what their needs are, and what to do about them. Adults still sometimes act on impulses. Adults still do only what they know how to do, what they have the ability to do, and the power and freedom to do. Adults still face limitations and restrictions on their knowledge, ability, power, and freedom…some people more than others.

Some actions are more acceptable than others, but who decides that? Adults in power do. Powerful people are human just like they rest of us.  They struggle to know what to do and how to do it, they sometimes act on impulses, they see the world through a cloud of their own experiences and biases, they meet their own needs however they can, they make mistakes (and sometimes learn from them, and sometimes don’t). They aren’t always right.

Some actions are more effective than others, and how is this determined? This depends greatly on the situation and the people involved.  When it comes to your own life and self, the only one who can truly know is you….

One person finds eating whole wheat makes them feel happy and healthy, another has Celiac disease and can’t eat any wheat without getting sick.

One person uses the Internet to learn new things and stay connected to friends, another person must avoid the Internet because they become addicted to it and lose control.

One person expresses dark emotions in art, another finds catharsis only through a razor and skin.

Not all actions are equally effective all the time, for all people. People and situations also change. Something that was once a solution to a problem, perhaps the only solution available, may now be a hindrance for which there are better alternatives. Recognizing this is how people grow. But when it comes to one’s own life and self, the only person who can know an action’s effectiveness is the person doing it.

This is why I loathe the term “unhealthy”, in reference to pretty much anything. I’m just not sure it even has an objective definition.  To call another’s life unhealthy is to take away their voice and coping skills, the only coping skills they may have right now (however poor you may think these coping skills are, they are still allowing that person to survive).

Like with children, the actions of adults also communicate something. If someone wants to change and you want to help them do it, listen. Listen to their words, their faces, their hands, their bodies, their tones. Listen to their actions. What need is the action meeting? Are there other ways of meeting this same need, that perhaps cause less harm to them or to you? Do they have the knowledge, skills, power, and freedom for this other solution? If they don’t yet, can you help them gain these things? Can you help them meet their need? If you can’t, or they don’t want you to (which is ok), can you just be there with and for them where they are right now?

If I had to name one purpose for my activism, it would be to remind myself and others that we’re ok…just as we are at this very moment.

It’s ok if you’re struggling.

It’s ok if not everything you do is awesome all the time (even things you’re really good at and take pride in).

It’s ok if you’re sad, or angry, or scared, or all of the above.  It’s ok to show and talk about your emotions, whatever they may be.

It’s ok to do whatever it is you need to do to cope.

It’s ok if you don’t even know what you’re feeling and what you need to do to cope.

It’s ok if you’re not always a good friend. (Nobody is all the time).

It’s ok if you’re still learning how to be an adult.

It’s ok if you don’t always like yourself. (Nobody does all the time).

It’s ok if you don’t fit in.

It’s ok to ask for help, in whatever way you can.

It’s ok if  you’re not always strong.

It’s ok if you feel like you’re that screaming 4-year-old child.

It’s ok to scream.

And it’s ok to grow and change. It’s ok to learn new and better ways of coping, of reaching your goals, of living, of being. But only if and when you want to, and are ready.

Until then, you’re ok… just as you are

 

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Things that inspired and influenced this post (thank you so much, authors and creators!)  Same trigger warnings apply.

The Uses of Negativity: Survival and Coping Strategies for Those of Us Who are Exasperated by the Empty Promise of “It” Getting “Better”

The Icarus Project on a non-coercive and compassionate approach to self-harm

Suicide is an Act of Bodily Autonomy

A Softer World: “Our bodies our ours…”

“Socially Inappropriate”: An Aspie on the value of stimming to Autistic people

“Unhealthy” or “inappropriate” actions as communication and survival

DSM Alternative Zine

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My friend Cameron compiled this zine on mad people’s descriptions of their madness, as a positive and “mad pride” and “radical mental health” friendly alternative to the DSM.  In addition to the self-descriptions of their madness, each contributor also created a piece of artwork depicting their madness.  I contributed to this zine under the pseudonym Lila.  It’s awesome, check it out!

DSM Alternative Zine.