Quickly, Now, Present.

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.

Short stories about inclusion

As a child, things that were different from expected orders or previous experience were a major issue for me. Truth be told, I still have difficulties with it. But the fear level that basic differences invoked as a child was pretty high. Adjusting to the diversity of the world around me was very scary when I was very little. I didn’t have ways to effectively categorize many unexpected experiences- from someone who always wore pants suddenly wearing skirts to rooms being arranged different from usual- and the level of overwhelm involved was dreadful.

One day a teacher- I believe it was in a pull out for speech and language arts, but I could be wrong- read me a story. It was illustrated, which was good as I hadn’t learned how to read on grade level at that point. It was very short. It asked a “what if?” question. What if everybody dressed the same at all times- everybody wearing brown suits, from old men to babies. On the facing page was a very dull street view of everyone looking the same in the same outfits. The teacher then talked about some of the possible “thens” or consequences: It would be harder to tell people apart; people might have trouble demonstrating their role without task specific gear; there would be fewer opportunities for beautiful things. Enhancing this experience was that I had a visual aversion at the time to the particular shade of brown. She also talked about some things that were a little more complex- for example, people showing their personality in their dress.

She had me look at the page, and it was scary to me in a way that new categories often are. The markers for what they were and what their context was became even more subtle, and that was difficult. Then we came to the next page, where the facing illustration was bright and diverse. A mother pushed a carriage; kids formed teams; old men wore cardigans and middle aged men suits. Seeing those markers made it a lot more obvious what were groups and what were not. The teacher talked about the different benefits of diversity: fresh perspectives; markers, some obvious and some more subtle than I could grasp without help;  beauty; and the ability to get more out of the world. This page was beautiful, more beautiful in light of the monotone of the page before it.

I don’t know for sure what she was intending to teach, but that story or exercise stuck with me. In retrospect, I’m sure it had many little problematic things to it. But what it did for me was important- it taught me that there is strength and, even more, beauty in diversity. Over time, that embracing of diversity developed into a love of all types of diversity- bio diversity in nature; socio-political diversities; diversity of our bodies; diversity of experiences; and yes, eventually neurodiversity. This one very short story opened my little mind up to much larger ideas down the road, ones that would help me to the better in dealing with the world around me. It demonstrated broadly a possibility, and flamed my curiosity about the world around me. It was still difficult, but that curiosity motivated me to see things through.

Lately, I’ve been reading a bit on children’s books. There are some big questions asked- how do we go beyond integration of diverse people in our children’s books to actual inclusion? How do we include without it becoming a “very special story/episode?” How do we get kids to apply these things to their classmates and neighbors? There’s a lot of wonderful discussion across disability advocacy, education, and parenting worlds.

I imagine that doing these things effectively will become more important as educators attempt to follow (to some extent) the recent Department of Education guidance about bullying and students with disabilities. This decision states, in short, that removing the victim is not an effective way to deal with bullying of students with disabilities, and that it could be considered a violation of the student’s right to a Free and Appropriate Public Education in the Least Restrictive Environment according to the department. (You may have encountered these ideas in their abbreviations, FAPE and LRE.) I’m cynical enough to question how well it be put into practice. But I do think that as educators attempt to apply this guidance there will be even more interest in effective inclusive story telling.

Now I know that my story above is a little specific in the details and mechanisms of working with a child like me with some delays in certain types of communication and social comprehension. (I gained quickly after I learned to read, but was delayed in when I began reading. I still have some social comprehension issues though they have improved.) But I believe that the core piece applies across the board- the development of curiosity that is not hindered by fear of the unknown.

So I’d add as a core issue in the discussion of inclusive storytelling “How do we ignite curiosity that the child can build on?” Because curiosity is a tool that can take us so much further-especially when if comes to embracing the possibilities.

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If you have further links on the subjects presented, please consider leaving a comment with them below to enable more people to be informed on them. Thanks!

On Creativity I: Word Usage

I’m not entirely sure I understand what people mean when they say “creativity” any more. I have this idea of creativity as a broad concept in my head, encompassing a wide range of things. As a result, when people say they aren’t creative or that so-and-so isn’t creative, I’m usually pretty boggled.

Creativity- [mass noun] the use of imagination or original ideas to create something; inventiveness: Firms are keen to encourage creativity.

Oxford Dictionary of English

Creativity- n. the use of the imagination or original ideas, especially in the production of an artistic work.

The New Oxford American Dictionary

It’s taking me a minute, but notice the differences between these dictionaries’ definitions for creativity? The ODE definition is closer to what I think of than the NOAD version. (Note: These definitions are from the Kindle versions that are updated with changes automatically.) When I went to look at the about, NOAD didn’t have anything. It’s a standard American usage dictionary. ODE was a little better- in fact, there’s a long forward in this edition of ODE. They adopted a different style for this one, one that “aims in part to account for the dynamism, imaginativeness, and flexibility of ordinary usage.” (They also included usages in a wider range of English using countries instead of just American usage.)

Because of my language acquisition methods, the range of concepts/shape of the word in my head shifts every time I hear a word differently. Because of the range of the usages I see for the word “creative” is broad, my idea of how to use that word is broad. It puzzles and frustrates me that people have limited definitions sometimes.

In fact, for a very long time- until the past two years actually- I was frustrated greatly by dictionaries. They never seemed to encompass everything about the words that I was learning. That the resource everyone was pointing me to when I was confused by how people used words didn’t cover the areas that I was struggling with- usage, broad definitions, implications, etc. – was frustrating. Beyond frustrating- I’m trying to think of an analogy that is a little more obvious without being unfair or ridiculous to compare. Like entering a supposedly accessible bathroom stall, only to discover there’s not enough room for your power wheelchair. The people in charge say “but we have an accessible bathroom!” but what they don’t understand that the supposedly accessible stall – which is meant to help you – doesn’t. Everyone thought a dictionary would solve my word usage problems, but for me, it didn’t actually grant access. Just because it meets the minimum standards of accessibility does not mean it actually meets the need in question.

As I’ve come to accept how broadly my neurology impacts some of the aspects of my life- and that just because I’m “good” at something doesn’t mean my disabilities don’t impact them- this has become a little less of an issue. My disability justice work, in particular, has reached a depth where I can recognize what is going on. I can now identify the issue, and either find a way that actually helps me or accept that I need to approach the issue a different way. It was a very hard lesson for me.

Don’t get me wrong, it doesn’t make the issue go away. For example, I still can’t define words very well on my own/in my own words, even when I’m relatively competent in using the words. More so for “abstract” words or usages of course. How I struggled in school when this is the sort of definition the teacher wanted instead of one that was lifted almost directly from a dictionary! In elementary and middle school, my LDs greatly impacted my grades and my relationships with teachers who thought that since I seemed to be “brilliant” or “intelligent” my issues must be laziness. By high school, I was a perfectionist about my grades, and when I had this sort of teacher I would get very frustrated. (Interestingly, the advanced placement or “honors” teachers were generally better with my approach to language usage than my other teachers.)

This brings me back to my point- to me, this approach of finding my own work around, one tailored to my own needs, is creativity in action. Building an accessible world is creative to me. Innovating, creating, re-purposing- to me, these are all creative acts. Sometimes they are hard acts, sometimes they are necessary acts, but they are all creative ones.

Sometimes they are vanishingly small acts- finding a way, even collaboratively, to deal with the trigger warning vs content warning issue for example. That debate is an act of creativity to me. The sense of awe I get when seeing innovative art even comes in to some extent. Any more, as I accept that other people don’t see it this way, I even get a sense of wonder about the sheer diversity of creativity- that my sense of it includes things that other people don’t, that it includes people who have felt alienated by other senses of what creativity is.

But that’s my personal definition, and if someone doesn’t identify themselves as creative I won’t label them as such. Performing acts of creativity isn’t the same as feeling an innate sense of creativity, and labeling a person something that functions as identity without their consent is kinda disturbing to me personally.

So, too, is ascribing attributes to an entire group of people. There is this- idea? Cultural meme?- that Autistics, because they are Autistics, aren’t able to be “creative.” I think this is pretty much the most easily debunked idea out there, but I could be wrong. It could be that their usage of creativity meets neither my own definition- which is admittedly broad- nor the ones in the dictionaries. But most people I’ve heard spout this realize they are wrong pretty quickly. There’s another one that people with mental health disabilities are inherently/innately creative in the traditional sense. This is harder to debunk, but it can be done. Especially if you know some of the people I know who explicitly identify as not creative. And I’m not just talking about medical model or even disease model people, either. Segments of the MHD community do actively ascribe creative to their experience of their MHD. That’s awesome. But it’s not awesome when they then try and ascribe creative as inherent to all people with MHDs.

I’m fine with creative, I’m even fine with linking my forms and concepts of creativity to aspects of my disabilities. But that’s my experience of my own disabilities, not someone else’s experiences. I don’t have a right to infringe on their autonomy- on identity or on anything else. I need to recognize- and yes, it is hard work to think this way for me because of how my brain works- that their experiences are not my experiences. And my experiences are not yours, your child’s aren’t yours, and your clients’ aren’t yours.

Which circles back around to realizing that not everyone has the same sense of words. Please understand, it wasn’t until I was 21 or 22 that I realized that not everyone experiences words and concepts as a mish-mash of texture, movement, and shape. I struggled a lot with figuring out why my words were wrong before I comprehended that I was processing the concepts behind the words differently. There were even times where I was shocked that someone would comment that they found a way of saying something or making something was creative. To me, the langauge that they found poetic or the art I made that they found creative were literals or very close approximations of how I experienced those concepts.

When I sit down to write poetry or make art, I don’t sit there and work on “creativity”. I sit there and I try out words that seem to be the right shape for what I’m “seeing” inside of my head. I sit there and think about the things that make me feel a certain way, that makes my internal experience match the concept my art is illustrating. I create a lot of analogies, and I go through a logical process of turning them into similes and then into metaphors. I create long lists of properties I see and feel about the two things I’m comparing. Sometimes I have to drop a concept because when I make the lists, I realize that the things I’m experiencing aren’t as similar to each other as I initially thought.

To me, while this might technically be an act of creativity, it doesn’t make me creative. It’s just how my brain runs. The sense of me as creative here is something that you or society is experiencing about me, and in this case I don’t mind it at all. Sometimes I do feel like I’m being “creative” in a smaller sense- the NOAD sense if you will. But much more often, I’m just being, experiencing the process of creating in the OED sense, or even my own personal sense of what creativity can mean.

Thank you, by the way, to elementary school teachers who got frustrated and desperate trying to teach me the differences between analogies, similes, and metaphors. I know it took me ages, but the tactics some of you tried did end up creating a functional system to process language stuff later on. Also, I read a lot of the books like “Heavens to Betsy” and other linguistic trivia books that would explain in plain language why people said certain things and used words in certain ways from an etymological perspective. I’m one of those people who loves dictionaries with huge etymologies. Sometimes I understand the word from the etymology better than from the printed definitions. In any case, language use and I have quite the complicated relationship.

I’m going to stop this entry now. The next entry in this series will be on poetry, and I’m setting a tentative date of Thursday, December 29th for it.  I’m not sure how many parts this series will have, as I think it will be an on going thing where next time I work out an entry that falls under the topic it will be a new entry in the series.