Tuesday, March 1, 2016

The Paradox of Disability in Publishing & Everywhere

The Paradox of Disability in Publishing & Everywhere

I’ve been trying to write this for six months. I hope it doesn’t come off as too entitled…My inner critic will keep me in check. She went to catholic school. 
        I’ll start with saying I threw a woman with a disability out of her seat at the movies. I’d do it again. My friend thanked me. Some people might have cheered. I don’t remember. I was very indignant, so was she, but I had the armed guard on my side. 
How could you do that? She was like that poor kid with the allergic reaction on the plane !
She wasn’t. In fact I think she was the opposite….
     She, and her boyfriend who was willing to move, were in disabled seating. They appeared to be able bodied. I asked them if they wouldn’t mind moving.  There were other seats available merely a few rows back. They were just up some stairs.        
     The woman said that she had a right to be in the seat because she had a gluten allergy. My friend was in a disability scooter. I have a severe limp.

  Let me fast-forward to a good experience. I went to comic-con this past year. I was so happy to see that there were three panels that talked about disability in geek culture. I was extra happy to see the organization We Need MoreDiverse Books (WNMDB) had their own panel. 

       I was hoping that there would be one person on the panel with a disability. There wasn’t, but everyone was great. I wouldn’t take any person off that panel for anyone else.  
        At the panel Lee & Low books was offering a special publishing contest to minority writers. I wanted to enter the contest, but it was only for writers of color. Lee & Low supports and recognizes disability as a minority. 
            The publisher explained that they are a small company and if they opened up the criteria any wider it would be too much for them to take on. She was absolutely right. I understood, and I still do understand.

     So, this is yet another passive-egressive blog about how you're not included ? Another self-involved millennial Gen-Xer! You want to push people out.

            This is another example of how complex disability is and why it gets left out. Speaking of pushing people out I go to Whole Foods--

Whole Foods? You're going to complain about Whole Foods?
No, but I go to Whole Foods sometimes because something happened at another store.  An able bodied woman jumped out of her car and started screaming that I was “a stupid bitch cunt face” because I stole her handicapped spot. She had a handicapped placard.  She literally tried to push me out. Once she realized she was screaming at a woman with a limp she literally ran away.

 I wanted to go to a disability city meeting to possibly talk about the abuse of placards. The entire city meeting was going to be taken up by people who have scent allergies. They were going to try to ban people who work for the city of Berkeley from wearing scented products. I didn’t go.
       So now you're back to picking on people with non-visible disabilities?
  No, I back to talking about the complexity of this issue. I know scent allergies are real, so are other allergies. I just don’t believe in dictating what other people do with their bodies. 

             I get easily startled. It’s part of my disability. I wouldn’t go to a city meeting and demand that all city employees speak in whispers. I do believe that demanding too much of others takes away from the disability movement greatly. It causes disability to not be truly included in diversity causes.           

Do you really need to be in with other minorities Whole Foods lady?
            Not all the time. Lee and Low chose to leave out disability from this one publishing deal and I don’t blame them. WNMDB also often leaves out disability in their surveys, tweets, and studies. I understand this too, but I wish they wouldn't.  
            WNMDB often refers me and others to another wonderful and hard-working organization: Disability Kid Lit.  Disability Kid Lit is wonderful, but they don’t have the pull that We Need More Diverse Books does.
            They don’t get the articles written in Salon. Most major articles written about needing more diversity in publishing don’t include one line about people with disabilities. I understand. Disability is so messy. Any person can claim to have a disability. Especially writers. We’re all depressed or have some PTSD or at least middle school was hard.
            But there is “hard” and then there is “under-privileged” hard. The U.S. census and the Disability World Health Organization  reports people with disabilities are more likely to be unemployed and sexually abused than any other minority group. Gluten allergy woman was loud about her rights as a person with a disability. You might see her or other people with disabilities being loud at the movies. 
However, our voices are less likely to be heard than any other minority group in major media.  Diversity in YA reported YA books we have the absolute lowest number of published authors. We have the least number of characters. This means people with disabilities are less published than even authors of color, and, there are less characters with disabilities than of color. 
            I have been silent for too long! Demanding inclusion. Just like the parking lot woman.
 I am not demanding inclusion. I’m hoping for more.
            People with disabilities share all the burdens that Paula Young Lee wrote about in her recent Salon article on ethnic minority representation of characters in literature. In YA a kid with a disability either ends up with a miracle cure or dead. Ava Jae did a great job of writing about that here
            Does gluten-allergy-woman have a right to say she has a disability?  Of course. 
            Is she entitled to services? Yes. She can have all the services she wants, AS LONG AS THEY PERTIAN TO HER ILLNESS AND DON’T TAKE AWAY LIMITED SERVICES FROM OTHERS WHO NEED IT.

I know people with severe dyslexia. They are part of the disability minority, but they would never take my physically disabled seat away. I would never take their dyslexic scholarship away, even though I have slight dyslexia.

            Does gluten-allergy-woman have a right to say that she is an oppressed minority? What if she writes a book? Isn’t she a part of the diverse voices that aren’t heard?
             She has a right to say and write whatever she wants. But, I believe this is the reason why disability is often left out. Disability is hard to define. 
            What service and opportunities people with different disabilities receive is even harder to define. I think it’s much easier to just say “yes, we include disability in diversity too,” and then never do much about it.  

         Say Lee & Low did open their publishing deal to people with disabilities. I wonder how many people with gluten allergies would have applied claiming to be an author with a disability, when their book was a re-telling of Hamlet in space with horny teens, one of which had a gluten allergy.

            Portlandia did a skit on the “temporarily disabled” and they nailed it. Their two most entitled characters got sprained ankles. After this they wanted to have all the “benefits” of disability. They also wanted to take over the disability movement.
             The skit showed people with permanent and significant disabilities kicking them out of the movement. I think the group was played by the real Disability Group in Portland. The woman in charge of the group defined what disability was with-in the group.  She explained why the temporarily disabled yuppie-hipsters (yipsters?) couldn’t be a part of the group. Then, of course, the yipsters started their own temporarily disabled group and claimed to be more oppressed.
People with all types of disabilities deserve services too. Who are you to judge?
They deserve appropriate services. Someone has to judge.   99.99% of all organizations are run by able-bodied people (cities, movie theaters, literary agencies…) I’m sure able-bodied people find defining disability difficult. People are going to be left out, and angry about it. Able-bodied people may feel that they have no right to define what disability is.
 Maybe even some people with disabilities aren’t as brave as the woman in the Portlandia skit. They don’t want to kick anyone out.With people like the white gluten-allergy-woman being so loud about her rights you can see why people with disabilities are often left out or not given as much time in diversity movement. 
 Maybe you are  a person of color that has only had experiences with people with disabilities who were like this woman, someone who wanted to have something they didn't have a right to. If that has been your only experience with people with disabilities I would encourage you to seek out others. If you find me, or this post entitled, know that there are people with disabilities you won't feel that way about.       
          So what would make you happy?
             I  hope people can be brave in their organizations. I agree with Lee here in the case of diverse novels. You know when someone is pandering or trying to “cash in” on diversity. Publishing companies should know when someone is pandering.
             In the case of publishing, if you aren’t sure if an author or a book is truly on the up and up with disability you can always ask the people at Disability Kid Lit. For example they might say: Tara Caimi who wrote Mush: from sled dogs to celiac, the scenic detour of my life  is a book written by a woman with celiac disease and about it. It fits disability criteria. 
            A book like The Magicians by Lev Grossman, which has themes of depression and mental illness but is mostly about struggling with academia and magic wouldn’t be considered part of disability diversity. 
Are you saying...
No one has claimed The Magicians is a disability book. Lev Grossman suffered from depression but he has never claimed to be a minority. I just didn't want to give a link to an actual book that claimed to be about disability but people said wasn't. 
            But Aren’t you just as bad as the parking lot or gluten allergy women? WNMDB is about people of color. Aren’t you trying to push your way in to something you have no right to?
     The We Need More Diverse Books movement has said it includes people with disabilities as well as LBGTQIA people. I know there are going to be times people with disabilities don’t belong, but please try to include it. 
 So what are you trying to say in your whining and tales of woe?
  I think the most important thing I want to say is this:
            Every organization that wants people of diverse voices to be heard MUST define what disability means clearly in that organization. I’m talking about books and publishing because that is what I’m doing now, but this also included work places and schools…places where it won’t be easy.
            If this doesn’t happen disability is going to get left out. It’s going to be officially included but really not included. You have every right to only have an organization that is only concerned with racial and ethnic (or LBGTQIA) issues. However if you really want to talk about diversity as a whole you must include disability (and LBGTQIA .) You then must define disability. Otherwise we’re going to be left out, and I think we could be stronger together.  
            All I’m asking for is more disability representation.  In the case of diversity in literature: when you write a Salon article and are including all people of color include at least ONE book with disability. When you post statistics include statistics on disability.  When you are hiring diverse staff also think of disability… Maybe invite one person with a disability on a panel. Don’t take away a seat from any of those people. Just include another seat. It could be a person of color with a disability.  Please don’t just refer people to DisabilityKid Lit. Use Disability Kid Lit in your own work! Also, go to Disability KidLit as they are looking for people of color who have disabilities.
            Have the courage to define what disability is in your agency.  I think we are often left out because people fear they are opening up seats that might be taken by people that don’t belong there. Some people might get left out. I might even be left out if a group decided to only define disability in a certain way. But, in the long run what you are really doing is letting people with disabilities in.
             Should you get back to actually writing your book?


  1. Nice. I'll get back to writing my book in a minute. You touch on a lot of points here that are close to me, as a fellow disabled-American.
    The double-edged sword bit for me is that I'm a middle-aged white guy, and *therefore privileged*. That's a complete crock of monkey dung, and it makes me want to whup people with my oxygen tank.
    So, my not being able to breathe properly, or go out much, or anything, doesn't matter.
    Thanks for writing.

    1. Glad you liked it! I was so afraid of just getting angry replies from people with allergies. :)

  2. I enjoyed reading your article :) PLease continue publishing helpful topics like this. Regards, from folding mobility scooter for adults.