This past week I wrote two blog posts about my increasing frustration with the events of Portland swing dance. This first one was basically an explanation of...why I won't pay upward of $100 to again be assaulted by a photographer & be told that the event organizers won't do anything about it. I know, I am so damn unreasonable.
This one, featuring a comment stuck in the spam trap & a photo of inadequate passive aggressive signage was a followup to both that and a "seriously? Does anyone think this sign is remotely approaching acceptable?" It's the size of a damn potholder!
Apparently someone doesn't like getting criticized on the internet, since I got an email from Mindy Hazeltine telling me that I may not go to Stumptown dance events anymore, for reasons that amount to "you are disabled and willing to make people uncomfortable to ensure your access."
That's right.
The kids who throw each other & almost drop each other on their heads? They're cool. The guy who regularly throws his follows into other couples & grinds all on new ladies? Oh, he's fine too. The retired military man who takes photos up shirts & down skirts and who has gotten into physical altercations on the dance floor? Yeah, he's all good too, just like the assaulty Evrim.
But oh man, be epileptic & insist on your access? GTFO! EMOTIONAL ABUSE! Make it much harder to switch out the good sign for the bad sign by removing it so the only choice is the good sign? OMG LARCENY. When Stumptown Dance promises to make an announcement & to talk to flashing people, and then fails, what am I supposed to do? Oh right. Be niiiiiiiice. Because it's totally expected to be niiiiiiiiiiice to people who are hurting you rightthissecond.
I wrote about that, actually. Over a year ago. I am not required to be nice. You are, however, required to not kill me. I know, I know, it makes you feel bad to be told, not asked, that you shouldn't kill me. I'm looking for a fuck to give, can't find one. Not feeling bad is not a right. Not being killed is. I wrote about this derailment, argument from tone in lateish 2011. Cuz "you were mean in telling me to not kill you" is a spurious argument, and people need to stop making it. As I wrote as one of the very first posts here, I shouldn't have to beg.
I briefly mentioned the whole flash photography issue in my BADD 2011 post, too. Being a one person anti strobe league for this long? It's hard. You get tired. You get real tired when people are like "you are inconvenient. Pay me to hurt you, or go away. I won't do the legally required accommodations because I don't want to!
A long time ago I wrote a post, Epilepsy Is, again inspired by the ableist treatment at Stumptown Dance events and the assaults by Mr Icoz and the resulting lack of acceptable resolution by Portland Lindy Society. One of the first posts on this blog was also about dance, and the ableism I've been fighting since day 1: Why This is a Battle Worth Fighting.
This is a long-standing problematic pattern. It doesn't matter if you don't find it 'convenient', or if you believe epilepsy is really demons, or whatever. The fact of the matter is there is a law, and excluding someone for insisting the law is followed rather than excluding those who will not keep it, that is a special kind of bigoted.
Showing posts with label accessability. Show all posts
Showing posts with label accessability. Show all posts
Wednesday, January 25, 2012
Saturday, April 30, 2011
BADD 2011. The fights we fight
I'm in the middle of 2 battles right now. 2 battles that should not need fighting.
One, I am a one woman anti strobe light league. People have them on the fronts of their bikes, and have told me that they are willing to take that risk because epileptic people cannot drive. It's not their call. Fighting to get flash photography banned at a place I go frequently-the red eye reducer is a strobe light just so you know-has taken the better part of a year and the start of a petition to DOJ. It also took me having 2 severe seizure clusters at the venue because of flash photography and a so called professional photographer aggressively strobing in my face and nearly hitting a friend of mine. Pictures are not more important than my health.
Then there's the restaurant with a strobe light outside, who told me that they aren't the only ones in town with a light and to get a life instead of telling them that they are hurting people. And there are the parking garages with strobe lights. There are the red lights and the school busses, all strobing. Because according to the real people out there, I DON'T MATTER.
I have been told that if strobe lights are dangerous to me I should stay in my house. They are fucking everywhere. NO. It is my world too.
Then there's a fight for access at school. I'm socially different, whoopie shit, and a teacher cannot handle that. It will eventually be covered in full here, but currently there are a lot of legal things going on and I don't think they go on the internet right now.
But this guy heard the word autism and suggested a yoga class and that I cannot evaluate risk because I am autistic. He has alternatingly ignored me and harrassed me for the whole term, because I am autistic. He has coerced the staff at the facility we use into harrassing me, because I am autistic.
He has bullied me via himself, the dean of the school, and disability services, because I am autistic. He is trying to bully me out of his class because I am autistic. Not because I am incapable, but because I am autistic.
The people who are supposed to be my advocates, Disability Services, are giving what he says more weight, because I am autistic. The dean is listening to him and talking down to me, because I am autistic. They are telling me again that who I am is enough reason to discriminate against me even though they have a policy against that. They are doing this, too, because I am autistic.
They will probably get away with it, because I am autistic.
They will fight for each other, but no one fights for us. I am tired of fighting, but I keep doing it because it's fight or die, and I am not dead yet.
Monday, April 11, 2011
"What Would Meeting You Halfway Be?"
My friend asked me this after class with an "aware" teacher. And I was flabbergasted.
I have no answer to that question. I don't even have the shape of an answer, much less words, a description.
Meeting us halfway just isn't done. No one considers it as an option. It's a tidbit of ableism that is so entrenched that I never considered it; autistics do all the work is just how it is. We give 95%, everyone else complains about the 3% they grudgingly give & then they demand that we meet them halfway-because 97% is the new half.
It never occurred to me that they are fully capable of giving more. I don't know why, just that they don't. A communication problem must have at least 2 sides, yet "I have a communication disorder, so this is my problem" is the way it is. It's how it has always been. It's how things will continue to be for the forseeable future.
I still don't have an answer to my friend's query. I guess part of meeting me halfway would be ditching preconcieved notions that I can (or cannot) do something based on my skill-or lack thereof-in another area. Part is not assuming or using communication between the lines. Take stims as they are. Take me as I am-everything I do has a reason, but fretting about that odd thing I do isn't meeting me halfway; it is othering. Don't other me.
But really, I do not have an answer. I could not tell anyone how to meet me truly in the middle. I don't know what it feels like. If it's like my social experiences at conferences, it's both a freeing level of acceptance and something the NT majority will never achieve in my lifetime. It's not something they can or will do.
I don't know where halfway is, and I quite likely never will. There, I guess, is the answer.
I have no answer to that question. I don't even have the shape of an answer, much less words, a description.
Meeting us halfway just isn't done. No one considers it as an option. It's a tidbit of ableism that is so entrenched that I never considered it; autistics do all the work is just how it is. We give 95%, everyone else complains about the 3% they grudgingly give & then they demand that we meet them halfway-because 97% is the new half.
It never occurred to me that they are fully capable of giving more. I don't know why, just that they don't. A communication problem must have at least 2 sides, yet "I have a communication disorder, so this is my problem" is the way it is. It's how it has always been. It's how things will continue to be for the forseeable future.
I still don't have an answer to my friend's query. I guess part of meeting me halfway would be ditching preconcieved notions that I can (or cannot) do something based on my skill-or lack thereof-in another area. Part is not assuming or using communication between the lines. Take stims as they are. Take me as I am-everything I do has a reason, but fretting about that odd thing I do isn't meeting me halfway; it is othering. Don't other me.
But really, I do not have an answer. I could not tell anyone how to meet me truly in the middle. I don't know what it feels like. If it's like my social experiences at conferences, it's both a freeing level of acceptance and something the NT majority will never achieve in my lifetime. It's not something they can or will do.
I don't know where halfway is, and I quite likely never will. There, I guess, is the answer.
Saturday, April 9, 2011
More Consequences of Awareness
Kay.
So I'm taking a rock climbing class at the local community college. One of my good friends is taking it with me (for fun, and because, well, having a seizure at the top of a climb would be pretty horrendous if no one knew what was going on).
A few things to note right now:
a) I'm pretty much left handed for athletic purposes.
b) It takes me a few tries to reverse something to work for my left hand-ESPECIALLY if I look at it forward on or from anywhere but right next to the demonstrator.
c) I start displaying imminent frustration before I really notice it, especially when the lights are bad (they were).
d) On me, that looks like sideways hand flapping, gettingallthewordsoutatonce, being a bit more "don't touch me".
I get services from the disability office at school. I am not required to tell my instructors what I have, but it's not like it's a big secret, and I don't want autisticy stuff to be assumed to be seizure activity or vice versa, so everyone knows. No big deal. Or it shouldn't be.
But! My rock climbing teacher! He's *aware*! So we're doing our thing in class, learning to belay after we learn to make the knot. All the staff and instructor types are right handed. Apparently I'm the only left handed person they've ever met. So they tell me 15 different ways to do things, most of which amount to "be right handed".
I'm a bit frustrated with this, but fine. Whatever. I can climb like woah. I manage to not drop my friend for whom I am belaying-I was clipped into a ground anchor because of a significant size differential, but he did not, in fact, die. I also did not die while climbing. Well done, us.
Then this minty staff lady comes over and tells me to do the opposite of what the instructor told me. Oh...kay...
None of these people have The One True Truth of belaying, obviously. All the things I did did, in fact, work. But being told 3 different things in 5 minutes (again, most of which amount to "be right handed") is a bit much. I'm still clipped in to the ground anchor, ready to go, my hands flap a little.
"Unclip."
"uh, what"
"Unclip. There seems to be negative energy and emotions.:
"...what"
Blah blah unsafe blah blah not concentrating blah blah frustrated.
"Well, you told me one thing and she told me another and it's what I was doing so I'm processing".
"Unclip & we can have a discussion"
"...I want a cognitive interpreter..."
Seriously, I had no idea what I did. None. The first thing that came up in the 'discussion' is that as an autistic person I just operate a bit differently, and oh man did the condescension turn on.
No, I do not need little words. No, I am not going to hurt you (WHAT is it with instructors asking me that this week? I'm 120 pounds. I am about as intimidating as a rabbit). My friend, who actually knows me, trusts me to not drop him. Please, keep your distance. Please, stop acting like having me here is a big fucking hassle. "are you sure you can...do this?" Why yes, yes I am. Crazy, but I'm in pretty good shape.
I do, in fact, learn even! I'm good with the distance keeping, honestly. I'm not so good with you talking to my friend (who was cognitive interpreting) like I'm a recalcitrant child, like I cannot hear you. I am not ok with the ableist language to my classmates and the assumption I wouldn't get it. Yeah, 'people like me' do in fact have recreational activities.
Oh, people like me are even adults! I don't care how well meaning your statements are, when they're talking points out of PSAs about children, I hate you. No, I won't fucking take a 'time out'. I will go get food. I will go for a walk. Anyone who thinks 'time out' is acceptable language to use with a grown woman is too far out of realityland for me to listen to, ever, but yes, I do in fact remove myself from situations.
Oh. The catalyst for his freak out? Flapping is BAD. No. Seriously. I thought he was saying it to cover for something even more ridiculous, friend said he was dead serious. Awareness tells him so!
Thanks, 'awareness'! I need to have my coping mechanisms demonized! It makes my whole damn day! I need to be treated like a kindergartener by a community college PE teacher! That made my whole week! And, shit! Having half my teachers afraid of me, THAT makes my whole year! Because we all know that all autistic people are Manchurian Candidates or something, just WAITING to completely lose their shit and destroy everything in our paths!
Except we aren't. If this is 'awareness', ignorance really is bliss.
So I'm taking a rock climbing class at the local community college. One of my good friends is taking it with me (for fun, and because, well, having a seizure at the top of a climb would be pretty horrendous if no one knew what was going on).
A few things to note right now:
a) I'm pretty much left handed for athletic purposes.
b) It takes me a few tries to reverse something to work for my left hand-ESPECIALLY if I look at it forward on or from anywhere but right next to the demonstrator.
c) I start displaying imminent frustration before I really notice it, especially when the lights are bad (they were).
d) On me, that looks like sideways hand flapping, gettingallthewordsoutatonce, being a bit more "don't touch me".
I get services from the disability office at school. I am not required to tell my instructors what I have, but it's not like it's a big secret, and I don't want autisticy stuff to be assumed to be seizure activity or vice versa, so everyone knows. No big deal. Or it shouldn't be.
But! My rock climbing teacher! He's *aware*! So we're doing our thing in class, learning to belay after we learn to make the knot. All the staff and instructor types are right handed. Apparently I'm the only left handed person they've ever met. So they tell me 15 different ways to do things, most of which amount to "be right handed".
I'm a bit frustrated with this, but fine. Whatever. I can climb like woah. I manage to not drop my friend for whom I am belaying-I was clipped into a ground anchor because of a significant size differential, but he did not, in fact, die. I also did not die while climbing. Well done, us.
Then this minty staff lady comes over and tells me to do the opposite of what the instructor told me. Oh...kay...
None of these people have The One True Truth of belaying, obviously. All the things I did did, in fact, work. But being told 3 different things in 5 minutes (again, most of which amount to "be right handed") is a bit much. I'm still clipped in to the ground anchor, ready to go, my hands flap a little.
"Unclip."
"uh, what"
"Unclip. There seems to be negative energy and emotions.:
"...what"
Blah blah unsafe blah blah not concentrating blah blah frustrated.
"Well, you told me one thing and she told me another and it's what I was doing so I'm processing".
"Unclip & we can have a discussion"
"...I want a cognitive interpreter..."
Seriously, I had no idea what I did. None. The first thing that came up in the 'discussion' is that as an autistic person I just operate a bit differently, and oh man did the condescension turn on.
No, I do not need little words. No, I am not going to hurt you (WHAT is it with instructors asking me that this week? I'm 120 pounds. I am about as intimidating as a rabbit). My friend, who actually knows me, trusts me to not drop him. Please, keep your distance. Please, stop acting like having me here is a big fucking hassle. "are you sure you can...do this?" Why yes, yes I am. Crazy, but I'm in pretty good shape.
I do, in fact, learn even! I'm good with the distance keeping, honestly. I'm not so good with you talking to my friend (who was cognitive interpreting) like I'm a recalcitrant child, like I cannot hear you. I am not ok with the ableist language to my classmates and the assumption I wouldn't get it. Yeah, 'people like me' do in fact have recreational activities.
Oh, people like me are even adults! I don't care how well meaning your statements are, when they're talking points out of PSAs about children, I hate you. No, I won't fucking take a 'time out'. I will go get food. I will go for a walk. Anyone who thinks 'time out' is acceptable language to use with a grown woman is too far out of realityland for me to listen to, ever, but yes, I do in fact remove myself from situations.
Oh. The catalyst for his freak out? Flapping is BAD. No. Seriously. I thought he was saying it to cover for something even more ridiculous, friend said he was dead serious. Awareness tells him so!
Thanks, 'awareness'! I need to have my coping mechanisms demonized! It makes my whole damn day! I need to be treated like a kindergartener by a community college PE teacher! That made my whole week! And, shit! Having half my teachers afraid of me, THAT makes my whole year! Because we all know that all autistic people are Manchurian Candidates or something, just WAITING to completely lose their shit and destroy everything in our paths!
Except we aren't. If this is 'awareness', ignorance really is bliss.
Sunday, March 6, 2011
What epilepsy is.
Epilepsy isn't just seizures.
Epilepsy is always having to be vigilant.
Epilepsy is knowing every escape route in case of a seizure.
Epilepsy is having to carry a first aid card, an ICE sheet, and wear a medicalert.
Epilepsy is doing all that, knowing all too well that no one actually looks.
Epilepsy is hoping people don't run away the first time you have a seizure.
Epilepsy is always being told that 'there are meds for that'.
Epilepsy is always having to be aware of potential flashing lights.
Epilepsy is having to choose between leaving a place & risking the lights.
Epilepsy is teaching other people how to turn off their red eye reduction flashes.
Epilepsy is having to explain why that matters.
Epilepsy is people telling you that your safety is less important than their picture.
Epilepsy is being yelled at for advocating for yourself.
Epilepsy is being yelled at for not advocating firmly enough.
Epilepsy is being yelled at for not being able to be diplomatic about how someone is hurting you NOW.
Epilepsy is being told you don't have a real disability.
Epilepsy is often being disabled by the very people who tell you that.
Epilepsy is spending days making arrangements so an event is accessable.
Epilepsy is having those agreements be broken, ruining your weekend.
Epilepsy is being expected to thank people for almost making an agreement.
Epilepsy is being yelled at for saying “you could have done better”.
Epilepsy is being expected to be nice about them trying, even if you just had a seizure that they caused.
Epilepsy is people telling you to stay in your house if others cause dangers.
Epilepsy is people thinking you are being too cautious by avoiding people known to be ableist.
Epilepsy is not knowing how many flashes will be a problem, but that whether 2 or 20, it's coming.
Epilepsy is having to educate people unwilling to learn, and doing so while you are at your worst.
Epilepsy is not being believed about your needs until you are in a drastic situation no one was willing to be ready for.
Epilepsy is being expected to be grateful when people almost treat you as a real person.
Epilepsy is knowing they don't think you are a real person.
Epilepsy is always hearing “you are an extreme minority so you don't matter”.
Epilepsy is hearing that from another minority who should get it.
Epilepsy is being unable to win, ever, because the rules keep changing, and giving up is losing too.
Epilepsy is always having to be vigilant.
Epilepsy is knowing every escape route in case of a seizure.
Epilepsy is having to carry a first aid card, an ICE sheet, and wear a medicalert.
Epilepsy is doing all that, knowing all too well that no one actually looks.
Epilepsy is hoping people don't run away the first time you have a seizure.
Epilepsy is always being told that 'there are meds for that'.
Epilepsy is always having to be aware of potential flashing lights.
Epilepsy is having to choose between leaving a place & risking the lights.
Epilepsy is teaching other people how to turn off their red eye reduction flashes.
Epilepsy is having to explain why that matters.
Epilepsy is people telling you that your safety is less important than their picture.
Epilepsy is being yelled at for advocating for yourself.
Epilepsy is being yelled at for not advocating firmly enough.
Epilepsy is being yelled at for not being able to be diplomatic about how someone is hurting you NOW.
Epilepsy is being told you don't have a real disability.
Epilepsy is often being disabled by the very people who tell you that.
Epilepsy is spending days making arrangements so an event is accessable.
Epilepsy is having those agreements be broken, ruining your weekend.
Epilepsy is being expected to thank people for almost making an agreement.
Epilepsy is being yelled at for saying “you could have done better”.
Epilepsy is being expected to be nice about them trying, even if you just had a seizure that they caused.
Epilepsy is people telling you to stay in your house if others cause dangers.
Epilepsy is people thinking you are being too cautious by avoiding people known to be ableist.
Epilepsy is not knowing how many flashes will be a problem, but that whether 2 or 20, it's coming.
Epilepsy is having to educate people unwilling to learn, and doing so while you are at your worst.
Epilepsy is not being believed about your needs until you are in a drastic situation no one was willing to be ready for.
Epilepsy is being expected to be grateful when people almost treat you as a real person.
Epilepsy is knowing they don't think you are a real person.
Epilepsy is always hearing “you are an extreme minority so you don't matter”.
Epilepsy is hearing that from another minority who should get it.
Epilepsy is being unable to win, ever, because the rules keep changing, and giving up is losing too.
Thursday, January 13, 2011
Why I dance. Why this is a battle worth fighting.
I swing dance (East coast/lindy hop) at least twice a week. I do this in spite of access issues that have been getting progressively more frustrating (and more hostile to deal with). It's possibly going to turn into a big legal & publicity shitstorm because being nice hasn't worked, being direct hasn't worked, and being mean hasn't worked.
So why do I bother?
Dance is good for me, that's why.
I have made friends. Not only that, but I've gotten better at making friends. I've gotten better at talking to people I don't really know. Approaching them is easier with the practice I've gotten over the past year.
Dancing is a peer recognized skill. If you can dance, that's something in common with a whole bunch of other people. If you're good, then there's something about you that people think is pretty cool, even if you never look them in the eye. I'm a quick learner-I'd not say I'm good, but I'm competent. I'd be lying if I said it doesn't feel good when people are surprised that I've been dancing for less time than they thought.
Dance is exercise. It uses up a lot of the energy I used to burn with gymnastics. It's not like going & lifting weights-it's the kind of workout that sneaks up on a person. Dance is so fun that I don't realize I'm pushing some of my physical capabilities until my calves start hurting the next day.
Dancing is a conversation without words. I'm not so great at reading people's body language. I'm not so good at reading between the lines when they talk. Following is sort of practice at reading people's intentions, but without the social traps waiting. If I can't read your body language, I could say or do something that's the opposite of acceptable. If I mis-follow a lead, whatever, it happens. It's practice, though, for at least seeing other people's cues. I still don't recognize facial expressions, or what people's changes in posture and such mean, but I've been noticing them a lot more.
Dance is freeing. It doesn't matter what I cannot do, it does not matter that I am fundamentally different in wiring, it doesn't matter that I perceive the world so differently from every one else. It's made up of movement and music. The language of dance is one that I can speak relatively instinctively, unlike so many other languages that people use. It's so liberating to be on a level playing field in at least one area of my life.
Not like I should have to defend what I do for fun, not like I should have to enumerate the benefits-"I like it" should be enough-but there it is. That's why this battle is worth fighting. Maybe I can dance with the next person who fights this battle, too, and we can be unstoppable.
So why do I bother?
Dance is good for me, that's why.
I have made friends. Not only that, but I've gotten better at making friends. I've gotten better at talking to people I don't really know. Approaching them is easier with the practice I've gotten over the past year.
Dancing is a peer recognized skill. If you can dance, that's something in common with a whole bunch of other people. If you're good, then there's something about you that people think is pretty cool, even if you never look them in the eye. I'm a quick learner-I'd not say I'm good, but I'm competent. I'd be lying if I said it doesn't feel good when people are surprised that I've been dancing for less time than they thought.
Dance is exercise. It uses up a lot of the energy I used to burn with gymnastics. It's not like going & lifting weights-it's the kind of workout that sneaks up on a person. Dance is so fun that I don't realize I'm pushing some of my physical capabilities until my calves start hurting the next day.
Dancing is a conversation without words. I'm not so great at reading people's body language. I'm not so good at reading between the lines when they talk. Following is sort of practice at reading people's intentions, but without the social traps waiting. If I can't read your body language, I could say or do something that's the opposite of acceptable. If I mis-follow a lead, whatever, it happens. It's practice, though, for at least seeing other people's cues. I still don't recognize facial expressions, or what people's changes in posture and such mean, but I've been noticing them a lot more.
Dance is freeing. It doesn't matter what I cannot do, it does not matter that I am fundamentally different in wiring, it doesn't matter that I perceive the world so differently from every one else. It's made up of movement and music. The language of dance is one that I can speak relatively instinctively, unlike so many other languages that people use. It's so liberating to be on a level playing field in at least one area of my life.
Not like I should have to defend what I do for fun, not like I should have to enumerate the benefits-"I like it" should be enough-but there it is. That's why this battle is worth fighting. Maybe I can dance with the next person who fights this battle, too, and we can be unstoppable.
You didn't win. I just gave up.
A big part of my life is dedicated to advocating for my own needs. Why? Because if I don't do it, no one else will. I have the strength of personality to face down asshattery again and again without getting too discouraged. Angry, yes, but I don't give up easily.
There comes a point, though, where I just shut down. I cannot have the same discussion in different ways again and again. Once you start looking for loopholes, start argument-from-toning (hint: I'm an adult. "That behavior in trying to get an immediate need met is inappropriate" is pretty much the most asshatty blame deflecting thing you can say. Ever. If you have ever said this to someone advocating for herself, climb a rope and let go over a pit of spikes. If you cannot yet climb a rope, I will teach you), start making excuse after excuse, I cannot continue dealing with you. If you staunchly refuse to listen to my well educated thoughts on a matter, then beating my head against the brick wall that is whatever topic is at hand isn't something I am willing or able to do.
You don't win if I'm not able to continue a discussion with you, though. Giving up on talking to you doesn't mean I gave up on the issue at hand. It means I am looking to route what I need around the false roadblock you set up. You don't think disability access is your problem? Sucks for you, since legally you are wrong and the court will cheerily tell you otherwise. You don't think that I know the first thing about my medical crap? I want a second opinion, from someone competent. I know you aren't competent because what you told me is the exact opposite of what the technical literature told me. Oh snap.
Once I give up on you, you are probably in for fury the likes of which hell hath not seen. I have other resources. Don't make me use them. Yes, I get overwhelmed, but I have that soul of steel that only lets me wallow in that for a few days if the issue is truly important to me. You only think you want me to give up on you.
There comes a point, though, where I just shut down. I cannot have the same discussion in different ways again and again. Once you start looking for loopholes, start argument-from-toning (hint: I'm an adult. "That behavior in trying to get an immediate need met is inappropriate" is pretty much the most asshatty blame deflecting thing you can say. Ever. If you have ever said this to someone advocating for herself, climb a rope and let go over a pit of spikes. If you cannot yet climb a rope, I will teach you), start making excuse after excuse, I cannot continue dealing with you. If you staunchly refuse to listen to my well educated thoughts on a matter, then beating my head against the brick wall that is whatever topic is at hand isn't something I am willing or able to do.
You don't win if I'm not able to continue a discussion with you, though. Giving up on talking to you doesn't mean I gave up on the issue at hand. It means I am looking to route what I need around the false roadblock you set up. You don't think disability access is your problem? Sucks for you, since legally you are wrong and the court will cheerily tell you otherwise. You don't think that I know the first thing about my medical crap? I want a second opinion, from someone competent. I know you aren't competent because what you told me is the exact opposite of what the technical literature told me. Oh snap.
Once I give up on you, you are probably in for fury the likes of which hell hath not seen. I have other resources. Don't make me use them. Yes, I get overwhelmed, but I have that soul of steel that only lets me wallow in that for a few days if the issue is truly important to me. You only think you want me to give up on you.
Tuesday, November 2, 2010
I shouldn't have to beg
I wrote this when I was having Issues with very basic "don't make me seize, 'k?" accommodations. It may be a bit wangsty. Please, give me some suggestions so I don't end up with a month of epilepsy wangst. As is my custom, there is swearing.
Institutionalized ableism becomes clear in a number of places and situations. Where it hits hardest, most gut-wrenchingly, is in asking for simple, by which I mean no-effort, accommodations and consideration for disabilities that aren't easily seen.
Yeah, I know, not having a strobe light everywhere is a fucking drag.I took up the hobbies I did because there shouldn't be any there. It doesn't matter that "you didn't know". A flashing light is a dangerous thing to have in this setting-people are moving in a number of directions fairly fast! No, I won't be nice or apologetic about stating my needs. It's my health vs your ego & your "but I dunwanna". Health wins. Access wins.
So many simple requests come down to need vs ego. Yeah, I know, your feelings are hurt that you aren't funny, you're actually kind of a douchebag, and I just don't have it in me to sugarcoat. I'm not going to. This isn't a preference here. This is a need. Were it just a preference, there'd be a lot less panic involved.
Yeah, panic. When you make me beg for a place to be relatively safe, safe as in non seizure inducing (and we all know I deal with audiogenic issues in my own way), it makes me panic. The power dynamic of begging means you can say no. It means that you, should you deign from your place of privilege to say yes, have a hold on me. And it's not like knowing who I have a crush on or the inane things I did when I was 10-it means you can revoke my ability to safely navigate a part of my world at any time, for any reason or none. A presumably public part of my world.
That's not how it should be. Access should be a right, not a privilege to be revoked at any time, to be whittled away for reasons and justifications that come down to "it's hard". Disabled personhood, epileptic personhood, autistic personhood is still personhood. My access matters just as much as the next person's.
I can't be silent on this as my world threatens to get narrower & narrower. I'm one of those uppity bad disabled people who won't stay silent and in my house. I don't know my place, you say. I defy notions of where my place is. My place is out here living my life to the fullest.
But the panic takes its toll. The seizures take their toll. The nastiness from others, that takes its toll too. By my mid 20s I've been threatened with a knife, I've had my skull bashed, and I've gotten more death threats than I care to count for the crime of wanting a life-an accessable life. If I'm abrasive about my needs, certainly nothing justifies assault with a deadly weapon, when I was 19 or now.
Stop narrowing my world. You won't even miss the flashies. You won't even notice other access features I or other people ask for. You may find they make your life easier too. You may find your world widened. But everyone suffers from the culture of silence and exclusion.
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