Crip Pride!

[wheelieterp]

I feel the need to clarify something for some people. Unfortunately, I feel the need to clarify this for people who are not on my friends list, but since this is where I rant, you all get to... er.... be clarified, even though I doubt any of you really need the clarification, such is the wisdom of my F-list!

I have Multiple Sclerosis. This is not news, I know... I talk about it here a lot. I don't, however, talk about it in person often, except to folks I know really, really well.

MS is a medical condition. It is firmly in the realm of the medical... It is a disease... It is something that is (and I use STRONG quotes here) "Wrong" with me. It is also personal, private, and just not always something I want to talk about.

I am also Disabled. I am a person with a disability. I want to point out that when I identify myself as "Disabled," I am capitalizing the "D." This is because it is an issue of identity. It is a label that defines me as a member of a community. I dare say that it is even a cultural marker, although maybe not in the strictest sense of the word. (While it's true that we Disabled folks have some social norms that are unique to our community, we don't really have a language or other markers of a true culture.)

My point here is that for me, the two are separate. Yes, my disability was caused by my medical condition, but my being Disabled is a declaration of my membership in a community.

This is important because when disability is seen in the paradigm of the medical, we get split into artificial sub-categories based on pathology and diagnoses. When it is seen as a medical issue, the direction of our community, the "Control," if you will, gets taken out of our hands and put into the hands of doctors, clinicians, social workers; people who are generally not us.

There is power in community, and there is pride. I am new to the Disabled community, yet I am not ever asked to qualify myself when I am with other Disabled folks. I am not asked what is "Wrong with me." I am welcomed and I am even learning to feel some rather strong feelings of pride around it.

But the most important part is that I am never, ever made to feel that I am NOT ABLE.

Recently, I took part in a focus group to help establish training for first responders in emergency situations such as natural disasters and the like. The very well intentioned folks for whom the focus group was set up to inform were concerned about how disabled people were handled in a recent huge drill that was done to identify areas where first responders needed training. They asked questions about how we wanted information to get to us, what "Accessibility" meant in terms of shelters, etc.... It was a wonderful, well intentioned plan to get the information from the Disabled community itself; how could they help us in an emergency situation get the life saving services we needed? It was a great experience.

And when I say things like "One thing that concerns me is that I will be safely and securely shuffled off to a shelter and taken care of," this comment is met with blank stares of confusion from non-disabled folks ( although several of the Disabled people there, who guessed where I was going had knowing smirks on their faces as if to say: "Go get 'em, Bug!").

I went on to say that I am an ASL interpreter. I have a skill that would be extremely useful in a disaster. I am concerned that I will not be allowed to participate in the relief effort because I am Disabled; that provisions will not be made to make use of our skills. We can and NEED to be able to help. THAT is what accessibility looks like.

It was later admitted to me by several good people that the thought that we, as a community, did not just need to be rescued, but that we could actually be useful was never thought of. This is what happens when Disability is seen as a medical issue and when policies regarding the accommodation of Disabled are designed by even the most well intentioned and educated able-bodied folks. Our strengths are missed.

Comments

[havdrake.livejournal.com]

Very eloquently put. May I share this with folks at work? One of the things we try to do daily is come up with examples that show where the point is being missed. This was a great example!

[dodgingwndshlds.livejournal.com]

Please do! I would be incredibly honored!

[khaybee.livejournal.com]

Remotely similar to the trouble I had last year in Japan. When I asked about the accessibility of the theatre, I was proudly shown a couple of wheelchair spaces in the back row. When I asked about getting onto the stage, the people running the show were baffled.

Japan is behind the US here, and they were so obviously proud that wheelchairs could now be accommodated in the audience. On the stage hadn't even occurred to them.

[dodgingwndshlds.livejournal.com]

Another perfect example....

I am committed to not being angry about these kinds of things, as I am sure you can relate. The intentions of these people are wonderful. But if we only look at disability as a "Small d" medical issue, and not a "Capital D" social/community issue, there is no room for educating these perfectly nice people who really want to learn.

[danjite.livejournal.com]

You are a hero and a role model in so many ways!

Permission to point others to this post?

[dodgingwndshlds.livejournal.com]

Thank you. That means a lot coming from you.

Please do point people to it.... It needs to be said...So... I will take it off the friend lock, and "Come out" as it were.

Gulp.

[desperance.livejournal.com]

Thanks for unlocking it; I'd have missed it otherwise, and that ... would have been a shame. This is awesome.

[elfkat.livejournal.com]

When I was at my last job they had decided that disabled people were to be the last one to be taken or to leave in a disaster and I wanted to be a floor monitor as I had in other places and they turned me down even though I had advanced first aid and disaster training. I thought that was about the stupidest thing there was. If I have to be last give me a job don't make me stand by the door and just watch every one leave. What a waste.

[dodgingwndshlds.livejournal.com]

Our biggest barriers are not curbs or even stairs, but the attitudes and assumptions of our self-appointed "Care-takers." Until we are able to explain to them what "Accessibility" means, rather letting them guess (or worse, decide what is "Reasonable"), we will be wasted. The loss is not only ours, it's true, but the loss to them does not lead to any able-bodied children growing up just knowing they are flawed and useless.

The sadness of it does not change the fact that part of what defines us as a community is something so negative as a shared experience of systematic oppression. My story, your story, they are all just a part of the collective narrative of our tribe. We cannot be studied as a sociological caste without losing the very heart and soul of us. We are not anything approaching homogenous, we are the ultimate paradox: A community made fiercely strong by our diversity. The things we share are almost all based on outsiders' reactions to us.

[elfkat.livejournal.com]

Too true and the sad fact is the temporarily able bodied really don't want to believe they could end up having a disability so to make themselves comfortable they marginalize us.

[dodgingwndshlds.livejournal.com]

The "Temporarily Able bodied" is a term I have recently heard for the first time. I have to admit, I don't like it. To me, it emphasizes that accident or disease that "made us disabled." It's another example of how well en-trenched that medical perspective is.

I know it is naive to think that all the oppression is from "Benign" ignorance and apathy; there is design to much of it. Still, my experience has been one of "That which brought you here, and all that came before is forgiven and forgotten. You are now one of us." I don't ever remember feeling hateful to Disabled people when I was able-bodied, but with the benefit of hindsight from the lowness of my chair, I can remember being oppressive. While I am not guilty of intentionally marginalizing, not out of an attempt to make myself comfortable or any other reason, I am guilty of ignoring, or simply not paying attention to, the needs of the Disabled community around me.

[cuddles-batcave.livejournal.com]

Bravo! You have highlighted some interesting comments in this journal. Electrical Eggs UK has been working hard to raise disability awareness at science fiction conventions since 1995 and I found your comment "While I am not guilty of intentionally marginalizing, not out of an attempt to make myself comfortable or any other reason, I am guilty of ignoring, or simply not paying attention to, the needs of the Disabled community around me" quite enlightening. I fervently hope that more people become aware of this 'subconscious head in the sand' attitude.

[dodgingwndshlds.livejournal.com]

That is awesome that you are working to raise disability awareness! Thank you! I hope you are getting help in said awareness raising from Disabled folks!

[zevinboots.livejournal.com]

I think the culture does have a language, at least as much so as the queer community has one, or the kink community, or the trans community, or the geek community, or any other group of people who share jargon. Speaking to the average straight person, words like ACT UP or Stonewall might make sense, but P&P, barebacking, FF, RACK, gaff, binder ... they'd all mean totally different things. You're explaining the meaning of access, and I think that's something of a language issue as well.

And like other languages, there are regional variations... here in the UK there's something called the NKS (national key scheme) in which one can obtain a RADAR key that opens the door to many disabled restrooms nationwide, which saves having to ask for a key or needing to be a patron of a particular business in order to pee (if they have a RADAR-equipped loo, that is).

I suppose one could say that jargon makes a language not, and therefore we aren't talking about culture, but rather about subculture. Either way, you rock for being an interpreter, or translator, or just fabulous you.

[dodgingwndshlds.livejournal.com]

I completely love and respect the ability to label our jargon and slang as "Language," and I also believe in the ability to self-define what a Language is. The academy does not always have to get the last word over what defines a culture. The academy validates based on consensus: Agreement makes right. Communities such as the Disabled community or the Queer community place a higher value, IMO, on a collective of diverse anecdotes and opinions; it makes sense that we would have a broader definition of culture. I sit, I don't want to say "Corrected," but educated.

Thank you. The Linguist in me can be such a rigid bitch. LOL.

[krypto38801.livejournal.com]

I was raised having a blind aunt, and I don't think of her any differently than I think of my own mother. I don't regard disabilities as a handicap, rather just another way of people being different, like hair color or height, etc. When we go out, she holds my elbow, and walks beside/behind me. I've seen her go through two guide dogs, and losing each one hurt all of us each time. She's the coolest aunt I know, (plus, she told us all the Helen Keller jokes, so SHE obviously doesn't think of her handicap as tomuch of a stigmata if she can joke about it).

Oh, the stories I could tell you about her childhood! ROFL!
But I digress. You are my friend. I didn't add you out of pity, nor do I regard you as any less of a person than anybody else. You're sexy, you're witty, and you're cool. I would gladly do whatever I needed to, becasue you're my friend, plain and simple :) And I WOULD like to learn ASL! (my aunt taught me all the bad words....)

[mrshannibal.livejournal.com]

your blind aunt sounds very cool!

[krypto38801.livejournal.com]

Oh, she's a hoot. She even sent me money to buy a truck when my car went ka-blooey, and I've been riding it ever since. Granted, it's about time to trade up, but I am still getting good travelling out of it (to work and back) PLUS she's overcome uterine cancer and chemo and (I think) a hysterectomy, so this woman is like the Godzilla of fortitude!

hi

[mrshannibal.livejournal.com]

you are awesome. this is an amazing post. thank you so much for sharing it w/the rest of us.

Re: hi

[dodgingwndshlds.livejournal.com]

Thank YOU for reading it and commenting!

[aadroma.livejournal.com]

This is a wonderful post ... thank you for this; I know more than a few people that need to read this. Apparently not having ONE ability somehow translates as "having NO abilities" -- it's sadly human nature to think in extremes rather than the reality of the gradients in the middle.

[bearsir.livejournal.com]

Oh, look. There's my giant crush on you getting bigger. I think it just busted its pants.

[dodgingwndshlds.livejournal.com]

I love you, too, you dirty Butch, you.

[thirdworld.livejournal.com]

Thanks for sharing. There are subtleties at play that sometimes you have to be immersed in to see, as you seem to have learned. I tweeted about it as, for whatever reason, my Twitter list is where my do-gooder buddies are. It reminded me of a comment from a disabled guy I used to work with. He was wheelchair bound and our DBA. He was a smart guy and I saw no other way to treat him than like everyone else, but when he retired he made a point of thanking me for this. It seemed silly because what other way was there to treat him, but I'd forgotten that many others spoke to the chair. It's absurd really. He could do the job and that's all that matters. And he was a team player. The other 2 DBAs were a sweet but inexperienced young guy and a grumpy bugger - easy choice for me.

I was pointed here by danjite, who believes you and I would get along famously, in part because we live in the same city and also because we share some interests (you and I share both him and khaybee as LJ friends). I've friended you, and if you like you can check out my LJ (I come and go in phases) and see if you want to do the same.

[dodgingwndshlds.livejournal.com]

I have friended you!! Welcome to the madness.... I am inspired by the comments you and everyone else has left.....


And... Umm.. Forgive my ignorance, but what's a "Worldcon?"

[thirdworld.livejournal.com]

Worldcon is The World Science Fiction Convention, an annual traveling convention (last year in Yokohama Japan, this year in Denver, next year in Montreal Canada). It's home of much fun, excitement and a ton of wide-interest programming. It's also home to The Hugo Awards. And a lot of geeks, dorks, nerds and fabulous authors, artists, editors, etc.

[intralimina.livejournal.com]

Hi, our mutual friend Margie pointed me at your blog. It seems we've morimur in common as well--he's been a good friend of mine for many, many years :-) Hence, I'm adding you to my feed, I hope you don't mind!

I am very into what you say here, especially as it came up directly with me on Tuesday at a legislative hearing regarding autism policy in OR. I was there mainly to point out the committee's past, current, and future lack of inclusion of actual autistic people in their work, especially glaring as parents of autistics were included, but not any actual autistic people. Someone afterwards stated to me, "Understand that those parents have other skills that make them valuable to a board" (or something along those lines). This was totally missing the point that many autistic people have other skills that make them valuable to a board as well. Why was there an assumption otherwise? And how do we change that assumption? (answers not expected as those are very complex questions)

[dodgingwndshlds.livejournal.com]

Ironically enough, when the email alerting me to your comment here came in, I was reading your entry about going to the hearing. Actually, I am sitting in my wheelchair at the bus stop reading it (and writing this) on my iPhone.... I have so much to say about all of this, I feel on the one hand excited to have connected with you and others from my community because of this post, and on the other hand, I feel like weeping at all of the stories of injustice that have been pouring in. I want a temple in which to house these stories as the holy relics they are.

The fact that is missed so often is that no matter how many ramps and curb cuts are installed, no matter how many Braille signs are put up, no matter how many ASL interpreters are provided, we as a community and as individuals will ALWAYS be the ones removing the majority of the barriers in our lives. When the worst of the barriers is people's attitudes and assumptions, the burden of overcoming them has to be ours, afterall, who else can tell them our stories? But when they refuse to listen to us, we cannot hope to work with them, and instead, we have to fight. We can only extend the olive branch for so long before their ignoring it necissitates our beating them with it. *grin*

Thank you for your post. Thank you for your comment here.