I’m not a side story

… But going by the stories out there, you’d never know it.

A few months ago, I had a dream. There was buddies and lovers and hijinx and fabulous clothes and lots of fun. Sounds like a pretty cool dream, right? Except when I woke up, I realized it was a nightmare.  For having seen all these fabulous things happening in my dream, when I woke up I came to the realization that it was not my narrative arc that the dream was following. I was a side character in it- a part so small I barely had a name in it, a character so minor that even in a romance novel series that pairs a couple up per book, my character wouldn’t have a book. I was the character who existed only in order to give reactions to the actions of the character the narrative followed, more object than person, more context than character. When I woke up, I sobbed silently into my pillow for more than an hour in the pre-dawn morning.

The framework this nightmare was built on didn’t blossom up from my mind alone. It grew out of a lifetime of the media we, as a society, consume seeding itself there. Very rarely are stories- particularly love stories- the stories of disabled folks living their lives. Too often when they are, they become pity fests, or the disabled love interest exists primarily to teach the non-disabled love interest a lesson about life. (And primarily these are still white, hetrosexual relationships.)

Living without seeing your reflection in media is hard. Trying to picture what it would be like to marry, or parent, when there’s so little media to help us think about those things realistically is hard. It’s soul crushing. And it permeates past your conscious efforts, right into what’s inside of you. Eventually, hopes that look pretty normal seem like fantasy. You stop being able to picture yourself doing the things that you hoped for, which makes working towards them that much harder.

And it’s not like it’s easy to begin with. Beyond just the difficulty of life in general, when you are a person with a disability there are additional factors.

There’s a moment in your life when you are disabled- or trans, or queer, or a PoC or…- when you realize that in most of the media you consume the people who do actually seem like you aren’t there to be fully realized characters. You are the comic relief, or an instrument of change. You are the reason that the “real” characters learn to grow up, or take their first stand against an enemy. You aren’t the protagonist yourself.

When the story is over, the characters like you go unremarked or are carefully wrapped up and put back where they “belong.” This goes for Rain Man as much as for the recent Bones episode “Heiress on the Hill”- while they deal with different disabilities and were made more than two decades apart, both end with the surprise brother going back to the “nice” private institution where it is said that they “belong.” That Bones decided to do this, more than two decades and the Olmsted decision since Rain Man, broke my heart. I stuck with the show, but now… I’m too disgusted to go back. There are less restrictive settings for people with that level of MH support needs. I would know- I’ve helped write policy about them. And even if there weren’t, we could have seen Bones and Booth put money towards FUNDING the development of less restrictive settings instead of how it went down. I feel betrayed. I started watching the show because there weren’t many women like Bones on TV, women with a lot of autistic traits who uses her special interest to understand the world, and now… I can’t.

I’m not the only person who has talked about this, about finding characters who are like you, who move like you, who live like you. Who have talked about the first time they met themselves in literature or film. It can be empowering, and it can also be harrowing- empowering because representation matters, harrowing because too often it’s sterotypes, because when we grow up and look back we realize our relief clouded things, because it’s so hard to find.

*When I read Rainbow Rowell’s Fangirl, there was one thing that really suck with me about it, and that was the protagonist’s father. Too often, parents with mental health disabilities are displayed as incompetent at best, often pitiable and where not as villain. But here I felt like he was considered a good father by the protagonist- a man who might make some mistakes, yes, and one whose MHD impacts his life a lot, yes. But in the end he is a good father, and a good man. This was very powerful to me- when I was younger, I figured perhaps it would be best if I didn’t have children. I’d only seen bad things happen in the stories I saw or read about parents with MHDs, and assumed that it would be horrible for my kids. That the pattern I had at that time of going to the hospital every 2 years for a stay would stretch out forever, that my kids would end up bouncing in between me and my mother forever. I thought I should plan hard enough to not want kids, and tried to squash down any desire to.

*And then my niece was born, and I realized that I really do want to be a parent some day. Because of physical health issues there’s a chance I’ll need extra help to become a parent, but it is something I want. And it’s funny- I haven’t been in the hospital for MH stuff since before then, and she’s 5, and will be 6 in the fall. Along the way I had begun uprooting the ableism that was embedded in me, and continue to do so. So finally seeing a positive yet realistic depiction of someone with an MHD (aka Serious Mental Illness or SMI) being a loved parent- even if he’s one that needs help sometimes- was very affirmative for me.

*There’s still that his story was a side story, yes, and it wasn’t exactly a life full of romantic relationships for him. Which is why I want to talk about The Fault in Our Stars super quickly. (I know some people hate the author, but I don’t so I ask that you keep author critiques on your own pages thanks!) It’s a book that treats people whose lives are often seen as tragic and cut too short as being full people. That their lives are or are likely to be short doesn’t make their lives less meaningful or valuable or worth living. It doesn’t prevent them from having complex thoughts and feelings about their lives. And it doesn’t prevent them from falling in love and *gasp* having romantic relationships that include being sexual. That was really powerful for me, as it was for a lot of other people.

Atop a pile of boxed up books is a red sign with blue-ish text reading, "We need diverse books because without them, I have trouble being the protagonist of my own dreams." With sheep turning into "Zs" around it are a cane, a Fluttershy plushie, and a Dora doll

This week, there’s an effort called #WeNeedDiverseBooks going on. May 1st, they are putting out submitted pictures (mine is above) talking about why it’s important that marginalized people are represented in literature, especially in children’s and young adult books. May 2nd, there will be a twitter chat at 2pm under the hashtag #WeNeedDiverseBooks- though the tag has been active since at least April 28th so feel free to join any time. (I’m @nicocoer.) On May 3rd, there’s going to be an effort to have folks buy, request, and share books about marginalized people and by marginalized authors. (You can find more details in this post.) I encourage you to check it out and to submit to the efforts as well.

It was this effort that helped me finally finish this post after months of working on it. I’m sure I could write more on this. I’m sure I could write more on how impactful it can be. But there’s too much to do that and ever really feel like I’m finished. And it goes, obviously, beyond disability- as many of the others involved in #WeNeedDiverseBooks can and are testifying, there’s too few representations of PoC, of people who don’t fall in the peak of the size bell curve, of people whose faith is not Christian (in the USA at least), or of a wide range of other folks. And what representations there are too often suffer from the same, similar, or analogous issues to those described above.

And none of us- none of us, period- should see ourselves as sidekicks of our own stories.

______

It’s also, coincidentally, Blogging Against Disablism Day on May 1st. Please go forth and check out the other posts being entered.

*Edited in. Forgot I hadn’t written it yet, oops. ~Bad Brains Princess at work~!

 

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Cracked Mirror in Shalott Expressions of PosAutivity: #AutismPositivity2014

I’m going to try to be really quick about my #AutismPositivity2014 post because I still need to finalize a poetry submission for Barking Sycamores– a poetry journal by and for neurodivergent writers- caption a couple of wonderful presentations, and finish a post for May 1’s #weneeddiversebooks event on twitter and tumblr. 

This April has been rough. Between the negative messaging the public is getting, news of yet more deaths of PwD at the hands of caregivers, missing persons cases, and hearings on both electric shock adversives (FDA’s #JRCHearing) and police brutality against PwD (Senate hearing live tweeted as #EthansHearing) it’s almost unbearable. In times like this, I think that the effort that #AutismPositivity2014 represents becomes especially needed. It can become very easy to allow all the negativity to metaphorically carry you away, and remembering to stop and look at the positivity can serve as an anchor.

Today I was in a board meeting for a state level self advocacy group. We are talking a lot about what we are doing going forward. Part of that involved chances to let each other “shine” and ended up resulting in some really positive feedback even during some really tense times- we were able to illustrate to people there to support us that while we may all be people with Developmental and/or Intellectual Disabilities that we are all competent leaders. While we’d keep doing what we do even if we didn’t get that affirmation, it would be so much harder- so when we hear it when it’s about something that we decided on and did, it is a moment of positivity and pride.

At the end of last month, I ended up testifying about the importance of Olmsted to my state legislature, specifically about the Keeping the Promise paper. (You can watch the whole hearing by scrolling to the hearing from 3/31/14- I plan on creating a cut that is just the self advocate testimony later but for now…) There were some hard things about this of course- I had to fit a 20 page document into about 5 minutes, they had me in the same panel as a gentleman who was vocally against community living, and the capitol building can be sensory hell. But it was still a moment of positivity. While I had the anti-community living guy on one side, on the other I had two gentlemen who used to live in a state center (read: DD institution) talk about how their lives have improved since moving to the community.  I had the chance afterwards to listen to a lot of other people passionate about some of the same things I am.

And for all the sensory hell involved, my state capitol is beautiful to look at, and I could spend hours looking at the architectural history… if it had been empty. If it had been warmer, I might have gone out to the fountain and watched the water. That instead I crept back a hall way into the more modern areas of the building where the acoustics are better wasn’t a horrible decision though- I had the chance to see how the building had been made more accessible without sacrificing the essential historical nature. (I will note: if you use a chair and are visiting, call ahead of time. While the business areas are fairly accessible, they have a history of shutting down certain elevators if there are too many chair users lobbying or protesting as a stalling tactic. Shame on them.)

There are little essential joys through all of these- and some of those I only have as much access to because of being autistic. Sure, all of these can be experienced to some extent by anyone. But there’s a particular essence to autistic joy that I can’t really explain. There’s also the sense of working with other people with disabilities that is important to have access to- the solidarity and interdependence when done right is just beautiful, especially in the face of hard things. Being autistic has been an anchor in it all.  I know this might not be your typical #AutismPositivity2014 post, but it is true, and it is what I have for you at this particular time and place.

six different colored hands against 6 different colored backgrounds. In front, the words Autism Positivity Flashblog 2014