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~!


11 thoughts on “I’m not a side story

    • Thank you for reading! In case you have comment notifications on, I did add three paragraphs of content after hitting publish. I had thought that I had included it but when I was looking it over I realized that I hadn’t actually done it? Oops. My brain is so much fun for us all…

  1. When I was thought to be schizophrenic, I referred to this phenomenon as being ‘the schizophrenic on the side’. The person who’s always on the sidelines and everyone else goes on with their lives and you’re left behind and forgotten and you disappear back into nowhere-land as if you’re just a faded half-dead object that never had reality.

      • Unfortunately I had a lot more trouble communicating, back then. So I’d say “I’m just the schizophrenic on the side” and people would try to convince me how unusual I was for a schizophrenic person, or they’d tell me all kinds of things that had nothing to do with what I was trying to say at all. But I didn’t have the words to explain what “schizophrenic on the side” meant. I wrote a really crappy poem about it and was told it was just self-pity. Which I guess the poem was a bit self-pitying, but the idea in the poem was this idea of being sidelined and left behind that was very real.

        But unfortunately back then… it felt like every time I really managed to get the words together to communicate a real concept from my head, not just words and ideas repeated from other people… which was a monumental accomplishment at the time, any time it happened…

        …any time I did that, it was like people didn’t see. They walked right past and didn’t see. They ignored whatever I said. And then they went right on responding to all the words that had no meaning, all the things I said that were just repetition of what others said, as if all that stuff was the real part of me, the important part. It felt like being trapped in a box and every time I managed to poke my head out they’d shove it back in and talk to the box instead of me.

        Which did not help, at all, my feeling of being the schizophrenic on the side. I guess now I’d say the autistic on the side, but same deal. I knew it back then because I saw it happening not just to me, but to everyone around me who shared that diagnosis. And certainly it happened to people in books.

        I remember when I started noticing that the only people even remotely like me in books, they disappeared into institutions and never came out, it was like they had never been alive.

        And the same thing happened to real disabled people around me. Like my neighbor got MS, ended up in a nursing home practically the next day, and spent the rest of her life there. Even her husband only visited her once a week.

        I remember when I realized that was going to happen to me if anyone ever caught on.

        I remember being in mental institutions and learning that life goes on, on the inside, and that you don’t disappear. I remember being disappointed. I remember wishing I could disappear like in the books, disappear even to myself, so I wouldn’t have to endure it anymore. I remember once I was already in, doing things to get put into more and more restrictive settings because I thought maybe if I was bad enough, eventually they’d find a way to lock me into someplace where even I couldn’t find me. But I discovered that even tied down in a back room and drugged every day, I was still there.

        I couldn’t understand how I could still be there. Because everything in the media told me that when you go to a place like that, you disappear. I hadn’t disappeared. Why was I still here? It was incredibly, deeply upsetting to me that I couldn’t disappear. That even if I disappeared forever to the outside world, I would still be there. I didn’t even get the benefits of my own disappearance, and that seemed immensely unfair to a confused, autistic teenager with severe emotional problems and a progressive motor disability that had me convinced I would never be able to make it in the outside world.

        I couldn’t disappear.

        I’m glad now.

        I wasn’t glad then.

        I really, really wanted, at one point, to be a disappeared disabled side character, because it would mean I wouldn’t have to experience myself anymore.

        And that says way too much about our society.

  2. Pingback: Me, The Bobbsey Twins, and Switched At Birth | Rambling Justice

  3. If you like romance novels, check out some of Christine Feehan’s books. I don’t read romance novels, but a friend of mine does and she told me about one of Feehan’s books that had an autistic heroine. She told me Feehan does extensive research to portray her characters correctly (and portrayed a lot of “bad” traits in positive and cool ways), and I think she has featured a few other “disabled” protagonists as well.

    I’ve had a lot of dreams where I wasn’t even in them. It was fun! I was like a disembodied spirit or something, and sometimes I would bounce between the bodies of the characters. But, I don’t enjoy receiving lots of attention. I’m happy being a ghost nobody watches, because then I can sneak around and get away with a lot more than somebody who has the spotlight on them all the time. If I wasn’t so horribly clumsy, I’d be a good ninja! 😀

    • Some other romances I’m enjoying:
      Madness of Sir Ian McKenzie (Was really great though a lot more seriously written than a lot of romances. Warning for institutionalization. Also? Seriously sexy.)
      The Survivors series by Mary Balough (No Autistics that I know of, but all are variously disabled heroes and sometimes heroines.)

      • My friend is still trying to convert me to the world of romance novels, but I’ll put them near the top of my list if she succeeds. The Survivors sounds tempting.

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