[Content Note: Disabilities, Rape, Surgery]
Ana's Note: This piece was composed in February 2012 and is an unintentional two-parter piece about ableism, with the first piece set to run 3/8/2012. The first piece was the Kindness & Cookies piece; this second part is the Firebrand piece.
It's getting harder and harder to avoid conversations about J.K. Rowling these days.
Last year in 2011, an announcement went out that the Harry Potter books would be available in eBook form in October 2011. And there was much rejoicing, because these books are probably the most sought after not-currently-sold-in-eBook-form books on the planet. There was rejoicing among eReading people in general, but there was rejoicing among People With Disabilities even more.
See, a lot of PWD can't read Harry Potter books. Many of them -- including yours truly, if we want to get personal -- have never been able to finish the series. And a big reason for that is that the Harry Potter books weigh, and this is a scientific fact, one megaton each. So if you have the kind of disability that prevents you from picking up and wrestling open one megaton worth of book, then you haven't read the most popular kids' book series on the planet. And if you happen to be a kid with this disability, this is really freaking sad. So the announcement that soon there would be Harry Potter eBooks to load onto eReading devices that do not weigh one megaton was extremely exciting for PWDs.
And now it's the first quarter of 2012. And there are no Harry Potter eBooks. There may never be any Harry Potter eBooks -- there was a survey back in, oh, December 2011 that I participated in that was basically all, "Do you guys even really want these because it's kind of a pain for us to have to, like, make them and stuff." And so I've been trying -- really really really hard -- to stay out of conversations about these books and their uncertain future as eBooks and the many speculations as to why J.K. Rowling isn't releasing them as eBooks despite being perfectly capable of hiring a very nice eBook formatting person to take care of the HTML coding.
Now, I tend to assume that Rowling is a perfectly lovely person whose company I would enjoy. And I also firmly believe that her intellectual property is her property to do with as she pleases. This is not a post about omg Rowling Is Awful because I do not believe that. So let's just hang a nice disclaimer over this whole post: I think Rowling is a Nice Person who can and should do whatever the heck she pleases with whatever books she writes and publishes. Yay for a Free Society and Copyright and Choices and all that.
But. I do feel, and I do not think it's wrong for me to feel, that the decision to indefinitely delay a handicap-accessible version of an incredibly popular kids' book series is a symptom of ableism in our society. It's one more indication of the fact that disabled people are routinely treated as invisible non-existent entities when the discussion of eBooks is treated as entirely a matter of pure, privileged preference.
And the reason why I've been trying to stay out of these discussions is that apparently when I say stuff like well, it's my personal feeling that all these endless delays is a big fuck you to people with disabilities, apparently I sound hostile. And when someone helpfully* points out that there are Harry Potter movies and audio books ($30 per book! listen to the whole series for $200!) that people with disabilities can sample and I say my god! audio books? this is a thing? why did no one ever tell me? THANK YOU, KIND SIR, oh-wait-I'm-hard-of-hearing, apparently that's just beyond the pale of appropriate internet etiquette. And here I thought I was being polite by saying thanks. *sad trombone*
* Haha, this is not helpful at all. Dear Internet People, please stop acting like five whole minutes of thinking about a disability gives you the same insight as living an entire life with a disability.
And you know what? I am hostile about having a disability sometimes. I freely admit that. But then when I say, yeah, you know what? I'm hostile about this because I live in a world that is hostile to me, some Very Nice Internet Person will always jump in to explain very kindly that what I am doing and the tone of voice I am using is Not Helpful and that if I really want to educate people about disabilities then I need to be a little nicer, a little sweeter, and a lot quieter. Because when I'm Being Hostile, it's just not helpful at all for helping people to learn to not be ableist.
Now, I'm all about the Tone Arguments. The bulk of my Feminism 101 posts are written with sweetness and light, reassuring the reader that oh, you're such a Nice Person, I know, here's a cookie and a glass of milk while you read my gentle words on feminism and why maybe you should totally not joke about raping people, yeah? And I even think there's a place for that in this world. Allies are allies, and some of them are won over by kindness and cookies and some of them need the occasional firebrand to get in their metaphorical internet head-space and break through the Privilege Shell. And to be freely honest, anger isn't something I'm usually very comfortable with, so I'm pretty happy to do the Kindness & Cookies thing and let the other feminists do the Firebrand thing. Yay for variety!
So it's interesting to me that I come off as so hostile in discussions about accessibility and books, and I guess it's because it's such a personal issue to me. Reading is knowledge, and knowledge really is power and privilege. Being able to discuss popular culture is a huge part of my daily interaction with people. My co-workers and I may not have much in common together, but by gum we can bond over The Hunger Games, and once that bond is established maybe they will prioritize my information requests such that I can accomplish my tasking. My relatives and I may not always be able to see eye to eye on politics and religion, but we can power through the family reunions with discussions of Twilight, and as long as those relationships are nourished, I can be reasonably confident that they will pick up their keys and come help me the next time I've literally fallen and can't get up.
This isn't unimportant fluff to me. The establishment of relationships through conversation is essential to my life. My ability to bond and network with people affects my career, my relationships, my access to basic services and needs. In the Maslow hierarchy, even if the act of reading is a Self-Actualization need, the information gained through reading still directly affects my Safety and Physiological needs. Being effectively walled off from a massive cultural phenomena against my will is not only upsetting and distressing, it reduces my ability to blend into able society and it draws unwelcome attention to me as different and Other. It's an act that has meaning to me, and to every person who shares my disability.
But able society doesn't acknowledge that. I can't count how many times I've been told online that People With Disabilities are not "entitled" to electronic copies of books we can't otherwise read, that we're not "entitled" to video copies of live musicals we can't otherwise attend, that we're not "entitled" to subtitled editions of movies we can't otherwise make sense of, that we're not "entitled" to see or experience the pieces of shared information that make our culture an actual culture and not just a random selection of individuals. We're being uppity to ask, we're being hostile to demand, we're being entitled to expect any kind of accommodation. Disabled people should all rot in a darkened room somewhere and be grateful for the scraps of culture thrown our way. And if we point out that this attitude that we don't even exist and aren't worth catering to is a "big fuck you" in our direction, we're labeled as Hostile. Aggressive. Uppity. Entitled. And above all, Not Helpful.
I exist. I deserve the same place in public as anyone else, despite being female, despite being fat, despite being disabled. I'm not going to go hide in a dark room or keep my opinions to myself simply because someone isn't comfortable with my existence.
I might be helpful. I might offer someone cookies or milk while I gently explain Sexism 101 or Ableism 101 or Racism 101 to them. I might work all day long, to the detriment of my health, my projects, my lifestyle, and my needs to help someone learn a little bit more about the people they'd prefer would Fuck Off And Die in order to make their world a simpler place. I might.
Or I might not be. I might be hostile. I'm not going to bully, I'm not going to harangue, I'm not going to cause harm. But I absolutely reserve the right to point out asshattery when I see it. I reserve the right to take a "helpful" suggestion and point out the underlying assumption that disabled people are too stupid to think of alternatives. I reserve the right to take an accusation of "entitlement" and point out the foundational belief that disabled people don't deserve basic human rights. I reserve the right to swear like a sailor while doing these things.
And I absolutely reserve the right to respond to an accusation of "Not Helpful" by saying that I've got all of ten spoons today and I'm not going to spend a single fucking one coddling someone who doesn't believe I deserve to exist in public discourse simply because I committed the crime of being born with a random genetic disability. If someone has a problem with that, by all means THEY can go coddle that person and teach them Ableism 101. Go with god, and my hat off to them. The world needs Kindness & Cookies, so if they've got the spoons to tackle That Guy, please go for it. But I'm not going to sit down and shut up just because they think I'm so very much Not Helpful. And if they've got the time and the energy to try to shut me down, but they've got nothing to say to That Guy, then please excuse me while I question their priorities.
Is that hostile? Yeah, it's probably pretty fucking hostile. But you know, it's funny how a lifetime of being called "entitled" for trying to survive and thrive will do that to a person.
And you know what else? I'm writing this post in February. By the time this post goes up, I may well be confined to a hospital bed, recovering from the same surgery I had a lifetime ago in a childrens' charity hospital not too far down the road. I'll have an eReader in my hospital bag in the hopes that a little reading will be able to keep my mind off the excruciating pain that inevitably follows being sliced wide open so that a doctor can reach in an fiddle with my spine. I'm guessing now, in advance, that eReader won't be containing Harry Potter books on it. If anyone thinks it's entitled and hostile for me to be peevish about that, well, I'd like to suggest they hold on to that opinion until they've walked a mile in my hospital footies.
And here's hoping that Rowling -- who is, I'm sure, a very nice person -- will prove my guess wrong.
UPDATE: The Harry Potter books went live five days after this post. Link here; rejoicing here.