10:08am May 24, 2014

So at the courthouse…

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I was using my iPad to communicate, because I didn’t want to lug an entire heavy computer up the hill with me.

And as I was typing, the woman behind the desk did that thing.

She turned to my case manager and said:

“Oh wow it’s so amazing that she has a thing like that. I mean I’ve seen things where you talk and the computer writes words. But I’ve never seen this. And think what it would be like if she didn’t have this. It’s so wonderful for her that this technology is available these days. She certainly uses it so well.”

And on. And on. And on.

I ignored it, I didn’t have the energy to deal with it.

I’ve been trying for a long time to write about why people have to ignore things and can’t fight it every time.

Someone’s going to give a particular annoying response to this post. Trying to figure out how to describe that thing and why not that thing.

You’re right. I can’t fight it every time. In fact, I can’t fight it most of the time.

There was a time I felt morally obligated to fight it every time, and it not only didn’t work, but it fucked with my personality really badly, and not in a good way. I kind of turned into an asshole. And it wasn’t that I was an asshole because I was speaking out when people did bad things. It was something else, and I don’t know the words to describe how it works.

I’ve been trying to find words for it. It’s hard to describe.

I think - the only way you can fight every time is by relying on rage. And by having a hair trigger for the rage.

Which means that it becomes impossible to actually judge situations. And then you become rage!attacky whenever someone annoys you.

Something like that I think

Yes that’s very much what it was like.

I wish I could fight things every time. I really really do. But a lot of times I just don’t have the spoons. Or I can see that fighting would be futile. Or I have to keep quiet and play the system in order to keep my freedom to do things and live life the way I want/need.

You can’t fight things every time. You just. Can’t.

And even if I could, I’m not sure I would.

I don’t want my entire life to consist of a fight. I encounter ableism (among other things, but ableism is by far the worst of it usually) in virtually every encounter with strangers and many encounters with people I already know. If I fought it every time, I’d have no rest from being a walking weapon.

I think some of the people who try to insist that disabled people ought to fight ableism each and every time it emerges have this idea that ableism is a relatively rare event and that it’s normal to have a long enough pause between one incidence of ableism and the next to recuperate from whatever shock, anger, or whatever we’ve experienced from the last incidence. And that the impact of each incidence of ableism is relatively isolated: it affects you for a little while then becomes less important as the event recedes into the past. And they’re not getting that, no, this is not how ableism actually works.

The way it works is more like this: I’m deaf. And I want to see a movie on blue ray. So I go to the store. And yes, pretty much all the movies (with the exception of small indie movies) will be captioned, here in the U.S. at least. But most of the special features are NOT going to be captioned, and often you can’t even tell from the label. Sure, I might not always bother to watch the special features—but sometimes I *do* want to watch them, and even if I don’t want to watch them right now I still want to have the OPTION to do so in the future. And the lack of captions takes away that option from me. So for me, going to buy a blue ray means I’m hitting an example of ableism for almost every blue ray that exists on the shelf: here’s ableism, more ableism, ableism, ableism ableism, ableismableismableismableismableism … and I haven’t even made it past letter A on the first shelf of blue rays. Each and every one of these blue rays with inaccessible special features is, potentially, a battle I could be fighting for access, not only for me but also for any other deaf people and people with auditory processing disorder that want to watch them. Am I supposed to fight each and every battle for each and every blue ray on the shelf to have accessible special features for me? If I’m fighting all of these battles, then when am I going to find the time to just sit down, relax, and watch the fricking movie that I had come to the store to buy in the first place? Am I never allowed to have a break and just recreate? Am I supposed to put all recreation on hold to fight every battle that falls into my path?

And that’s what it’s like for a DEAF person shopping for blue rays. These days, captioning is more prolific than ever, at least for blue rays and dvds (not yet in movie theaters, in the U.S. check http://captionfish.com to get an idea where there is and isn’t captioning in theaters). But audio description, in which someone describes the visual action during natural pauses in the dialogue so that people with vision impairments can understand what’s going on—audio description is much less common than captions. So how do you think blind people feel when they go shopping for a blue ray?

Yes, there are battles I do fight. There are times when I do educate. There are times I see the five millionth uncaptioned YouTube video and put a note in the comment section asking if there’s a captioned version or if it will be produced with captions. And sometimes I even meet with success, and the video gets captioned. But if I took action each and every time I saw something that wasn’t accessible to me, then I would pretty much never be doing anything else because that would be taking all my time. No time to go to work and earn a living, sorry, I just saw another hundred videos that aren’t accessible to me.

And all this is just using video accessibility as one example of one way that deaf people (and blind people) can experience ableism. I haven’t even BEGUN to talk about all the OTHER ways in which I can experience ableism, such as trying to make an appointment to talk about an important aspect of my medical health with a doctor who refuses to obtain a sign language interpreter, or trying to ask for important information from a hearing person who refuses to accept that, no, I really CANNOT lip read them and really DO need them to actually pick up a pen and WRITE what they’re saying.

People who try to insist that we fight EVERY instance of ableism we encounter also don’t grasp that there is an accumulative effect of all the ableism we confront. There have been so many times when I will, for example, encounter difficulty in getting the right people to understand that, yes, I have a right to a sign language interpreter, and yes, it is legally THEIR responsibility to provide the interpreter. And I will encounter this when I’m still tired and frustrated and angry and sad from the last 10 battles just like it that I have had to confront. So sometimes just realizing that here we are, I’m being denied access AGAIN … or being asked to deal with a hearing person who has negative attitudes toward communicating with me as a deaf person, AGAIN … will make me feel so tired and burned out that I can barely find the energy to even try.

And THAT’s why us disabled people NEED to pick and choose our battles wisely. People who insist otherwise aren’t understanding that we aren’t dealing with rare, random events here. We are dealing with a long, grueling campaign that has been going on literally since before we were born. And yes it gets better with each generation, every time another disability rights law is passed somewhere, every time another country ratifies the Convention on the Rights of Persons with Disabilities (i.e., the international “Disability Treaty”), every time another non-disabled person “gets it” about disability. But it’s still tough and we still have to be prepared to keep on going over the long haul, over not just the next few minutes or the next few days but the next few decades of our lives. We can’t afford to fight every battle because then we’ll have no reserves left for when the REALLY important battles come, the ones where ableism could literally kill us or people we care about. (Like Mel’s battle to convince the doctors that, yes, she DOES prefer life with a food tube over death without one. As just one example of too many.) So excuse me if I don’t immediately pounce for the key board to write an email to the proper authorities every time I encounter a blue ray with inaccessible special features or a hearing person in my life who doesn’t want to understand how to communicate with me more effectively.

Some people who insist that we ought to fight it every time are disabled people, though. And some of them are, themselves, paying the price for fighting things every single time. But they can’t see that they’re paying a price, or they think the price ought to be worth it to everyone. So then they act like the rest of us are just ~insufficiently radical~ or something if we don’t blow up at people every time something ableist happens. (I think this is compounded by the confusion of ~radical~ with ~angry~, which from what I’ve been told was a deliberate distortion introduced into activist movements to make them less effective.)

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