Yesterday they released the news of another child killed because of the ableism that the rhetoric of tragedy fosters.
Daniel Corby, age 4, was drowned by his mother in San Diego. Already people, including the media, are leaping to say that autism is so hard, no wonder she went over the edge. No. No. No. You don't say that. There is no excuse to kill people.
And this is what awareness does. The dominant narrative is that of hopelessness. The dominant narrative is of isolation and despair. The dominant narrative is that we are perpetual burdens, never to grow or be anything but 100% dependent. The dominant narrative is of tragically unhappy lives.
Awareness is wrong. We are, on the whole, not unhappy. We do not need the terror around how many of us there are. We do not benefit in any way from information that makes us sound like scary, alien beings. And we do not benefit from being seen as less than human, as things to be endured rather than people to be embrace.
Daniel could have had any of a number of futures. Now he has none of them. This is unacceptable.
Stop killing us.
Showing posts with label angry. Show all posts
Showing posts with label angry. Show all posts
Tuesday, April 3, 2012
Sunday, April 1, 2012
Autism & Child Abuse: Both for April. Oh IRONY.
[Trigger warning: fairly graphic description of physical, emotional, sexual abuse.]
April is "let's make autistics hate themselves!" month. It's also child abuse awareness month, though you don't hear much about that. They talk all about the devastation wreaked by autism, but you barely hear anything at all about child abuse. That's fucked up, in case you were wondering.
There have been a couple murders of disabled people recently, murders by family, and the general caregiver reaction seems to be to pull into little self congratulatory circles and say that it can't be true, it must be an aberration, they and no one they know would do that. Parents of autistic kids are fucking saints.
Let me tell you, that is not the case. My parents are not saints, and my story is middle of the road based on what a lot of autistic people I know have said to me. Parents of autistic kids want us to shut up and not say this, they want to erase our stories, but that does no one any good. Trying to erase our experiences helps no one, even if it does make parents feel better for a few days. Don't dare step that close to abuse apologism, it is not acceptable.
Now I am going to tell you about some of the things my parents did when I was growing up. And yes, if you empathize with them I absolutely believe you are a horrible person.
So let's start with a brief description of my family structure, because it's kind of effed up: I have a mother, and my half-siblings' dad is on my birth certificate. They got divorced, I have a stepmom via my not-really-dad, and am on my second or third stepdad on my dad's side. Annnnd I have a biological father. Annnnnd a lot of siblings. Got all that?
We'll start by talking about when I was young. Both my mom and not-really-dad were spankers, by which I mean "kid, you have pissed me off and I am going to vent my spleen on your bony little ass," and, in my mom's case "also your face because your ass is really fucking bony." Offenses that got me hit until their hands hurt include such awful things as flapping, not being able to stop giggling, zoning out (both of which can be manifestations of seizure activity), arguing, and not understanding a statement or direction. That's right, these people were hitting a kid with language comprehension delays for not comprehending language. And I do mean hitting. Hard. Bruise leaving. I got a black eye and a cut across my cheek once from my mom; I was about 6 or so. The offense? Freaking out because shampoo got in my eye.
As things got more stressful and they divorced, these people got worse. My mother would absolutely lose her shit and hit me for no reason. She would scream and scream and scream at me, usually while I was stuck in the car with her. Then when I covered my ears or cried, she'd hit me and pull my hair. She did this once and then chased me around with a camera to try to get pictures of the ensuing meltdown, threatening to send them to everyone in school.
Go read that again. That's emotional abuse on top of physical. Contrary to what Autism Speaks thinks is a fucking awesome idea, triggering meltdowns intentionally to document it to show people is fucking emotional abuse.
But this was a thing she did frequently. She'd be pissed off about one thing or another, looking for a fight, and I wasn't exactly in tune enough to avoid her. Unlike my siblings I didn't have friends whose houses I could vanish to for days at a time, so I was stuck with her. She'd want a fight and she'd pick and pick, she'd file her nails in my ears-this is not a sound I can tolerate on the same bus as me, much less right next to my ears-and she'd start calling me disrespectful and yelling and demanding an explanation when I covered my ears. No explanation was ever ok, and she'd keep yelling and yelling until I lost my shit, then she'd keep yelling. Or she'd touch me and it'd startle me and that'd be the most offensive thing in the world, again with the yelling. Or she'd try to have a conversation, but it'd be about why I didn't have friends or couldn't be normal or wasn't girlier or whatever. Then no matter what my answer had a "tone" or my face had a "snotty expression." Nothing I could do was right.
Regardless of the method she used, the result was always a meltdown that would.not.end. She wouldn't back off no matter how I asked, & I wasn't big enough or strong enough to shut the door & keep it closed until I was about 14. She'd keep yelling and poking and trying to argue until I was completely nonverbal, biting myself, and too exhausted to keep crying. Then she'd try to hug me and all I wanted was for her to go. away. but she wouldn't. And she'd tell me it was love and she just wanted to "help me".
A favorite technique during the meltdown provocation procedure was to throw absolutely terrifying threats on top of the sensory poking and the demanding the impossible. The first time she threatened to have me put in foster care I was 7 years old. I believe it was over leaving the room because she was smoking and filing her nails (which she told me she loved more than me when I was 13), but that could be inaccurate. So many minor offenses got this treatment. As I got older she started threatening to have me locked up in a mental ward. I am deathly, deathly terrified of confinement and always have been. My mental images of both foster care and mental hospitals come from a combination of my mother's words and Lifetime television, which did not help the abject terror-and abject terror is not exactly conducive to calming down. My mother later leveraged this fear by instigating meltdowns intentionally-she always did love that game-and then calling police saying she was afraid of me. Now is a possibly relevant time to mention that when I last saw her, she had 4 inches and at least 50 pounds on me. Physically imposing, I am not, and lashing out at people who are not directly touching me is not a thing I ever did.
Ok, so now an interlude to talk about my not-really-dad and his new wife. I still went to visitation over there because we have the same last name and, to his credit, he was pretty awesome until he got remarried. His new wife resented the hell out me though-I still don't know why, really; it's not my fault the guy signed the birth certificate knowing damn well I'm not his.
My not-exactly-stepmom has really delicate little feelings. I have never been the most tactful of souls, and frankly, a grown woman allowing an 11 year old to upset her enough to storm upstairs until said 11 year old apologizes is not the most mature of things. The unpredictability & unreasonably high standards for knowing what would set her off were one thing.
The not allowing me to eat and dragging me antiquing is quite another. I'm not talking "not allowing junky snacks". I'm talking "over 24 hours without food." I'm talking "if you were that hungry you would have apologized for hurting Diane's feelings." It does not work that way. Trying to starve an apology out of a 12 year old is unacceptable. I had a seizure in the antique store-one of very few tonic clonics I've had aside from The Year Of The Seizure. I woke up to being yelled at for being an attention seeking little hobag. Again, I was TWELVE.
Shortly after that her son stuck spitballs on my bedroom door and he blamed me (which makes no sense) so I had to sit in the living room an entire weekend, except breaks every 6 hours to go to the bathroom. Not long after that I hurt her feelings again and she threw a corncob and a glass of wine at me. Another few weeks, and her son was spreading awful shit about me around the neighborhood, he denied it, and then I was again relegated to a chair in the livingroom for...I don't even know what the offense was. Just that apparently there was one.
The last time I went over there I was 14 years old. Stepmonster's sister and nephews were in town. A stepbrother, a nephew, a sister and I were down in the basement by the computer. My stepbrother told my stepcousin (well, semistep people but whatever) that it was really fun to see how far my arm would twist behind my back-this is nothing that I ever let anyone do, ever. So my semistepcousin twisted it, I said nonostopstop, and my semistepbrother told him to twist it further. My arm popped out of my socket.
All the way out of the socket.
Like any child who thinks their parents aren't utter sacks of shit would do, I ran upstairs, arm flopping, totally screaming-I have a high pain threshold, but dislocations that don't immediately reduce hurt like hell. My semistepmother and her sister started yelling at me for being a big baby and making a scene.
My arm was hanging entirely out of its socket. A scene was utterly appropriate.
I begged my not really dad to take me to the hospital to get it fixed. He refused. I begged him to take me home. Again, he refused. I walked 15 miles from his house to my mom's house, in the rain, on the highway, with my dominant arm out of socket.
My mother couldn't take me to the doctor until the next day because she was already drunk. To this day it has some laxity beyond what my other Ehlers-Danlosy joints have.
Now we're back to mom's house. As you may recall, my mom was a hitter. Most people who hit their kids stop when their children get big, strong, and/or bold enough to hit back. But not my mother!
The first time I fought back, I was maybe 12. I didn't even do anything that violent back; she was going to slap me for something and I caught her arm. This is the day I got my first dent in my skull. She was so enraged that I caught her arm that she threw me at my bed-at that point there was nearly a 100 pound weight difference-and jumped on top of me. She banged my head into the metal bedframe multiple times and punched me repeatedly. This is the first time I feared for my life at the hands of my mother.
About that time my stepdad started sexually abusing me as well. He had always been a yeller, which terrified me, but there is no terror like a giant coming to the night to try to make you respect him by using his penis as a weapon. I still have the knife I used to defend myself under my pillow, & carry three physical scars...one for screaming, one for fighting, one for biting.
He wasn't above physical intimidation in broad daylight either. On my 16th birthday I had to jump out the window to get to school because he had his 250 pounds planted against my door, keeping me inside, because I wouldn't bring up my laundry before school started. That was the day I knew my mom knew he was sexually abusing me-she said she did not want to hear anything bad about him unless he was stark naked about to rape me. And then I knew she knew.
But back to my mother. As I got older, and stronger, she wanted me weak. She had always given my siblings lunch money, but I had to earn mine through babysitting. Rarely did I eat school lunch from about 13 on; the option of taking a lunch doesn't work when there's nothing to take. My gymnastics coaches and some teachers took to feeding me, because I drop weight very quickly indeed. By this point most of my siblings were living with their dad or in their own places, so they didn't suffer the no-food-but-Hot-Pockets years.
My mother continued to pick fights, and continued to get physical. She learned restraint for work and thought it was a great idea to pick a fight with me to practice. Let me tell you first hand, it is impossible to breathe. Those are not safe techniques. They are completely not conducive to calming the fuck down. Putting your teenage daughter in a baskethold and dislocating both her shoulders in the process is abuse. Pulling handfuls of her hair out is abuse. Digging a knee into her back is abuse. I feared for my life from the time I was 12 on because of how unpredictable and how physical my mother was willing to be, and over things like sensory issues.
They terrorized me physically, emotionally, and sexually, all while telling me they loved me. They used systems, including the medical and law enforcement systems, to keep me in a state of constant terror. There are other things that aren't on here, there are details I cannot deal with writing out.
Do not dare tell me that parents cannot be monsters. I lived with monsters. I am not a monster for making you think about it. They are monsters for doing it, and anyone who tries to excuse it is as well.
Do not erase my story. Don't fucking dare say this shit doesn't happen. It happens every day.
April is "let's make autistics hate themselves!" month. It's also child abuse awareness month, though you don't hear much about that. They talk all about the devastation wreaked by autism, but you barely hear anything at all about child abuse. That's fucked up, in case you were wondering.
There have been a couple murders of disabled people recently, murders by family, and the general caregiver reaction seems to be to pull into little self congratulatory circles and say that it can't be true, it must be an aberration, they and no one they know would do that. Parents of autistic kids are fucking saints.
Let me tell you, that is not the case. My parents are not saints, and my story is middle of the road based on what a lot of autistic people I know have said to me. Parents of autistic kids want us to shut up and not say this, they want to erase our stories, but that does no one any good. Trying to erase our experiences helps no one, even if it does make parents feel better for a few days. Don't dare step that close to abuse apologism, it is not acceptable.
Now I am going to tell you about some of the things my parents did when I was growing up. And yes, if you empathize with them I absolutely believe you are a horrible person.
So let's start with a brief description of my family structure, because it's kind of effed up: I have a mother, and my half-siblings' dad is on my birth certificate. They got divorced, I have a stepmom via my not-really-dad, and am on my second or third stepdad on my dad's side. Annnnd I have a biological father. Annnnnd a lot of siblings. Got all that?
We'll start by talking about when I was young. Both my mom and not-really-dad were spankers, by which I mean "kid, you have pissed me off and I am going to vent my spleen on your bony little ass," and, in my mom's case "also your face because your ass is really fucking bony." Offenses that got me hit until their hands hurt include such awful things as flapping, not being able to stop giggling, zoning out (both of which can be manifestations of seizure activity), arguing, and not understanding a statement or direction. That's right, these people were hitting a kid with language comprehension delays for not comprehending language. And I do mean hitting. Hard. Bruise leaving. I got a black eye and a cut across my cheek once from my mom; I was about 6 or so. The offense? Freaking out because shampoo got in my eye.
As things got more stressful and they divorced, these people got worse. My mother would absolutely lose her shit and hit me for no reason. She would scream and scream and scream at me, usually while I was stuck in the car with her. Then when I covered my ears or cried, she'd hit me and pull my hair. She did this once and then chased me around with a camera to try to get pictures of the ensuing meltdown, threatening to send them to everyone in school.
Go read that again. That's emotional abuse on top of physical. Contrary to what Autism Speaks thinks is a fucking awesome idea, triggering meltdowns intentionally to document it to show people is fucking emotional abuse.
But this was a thing she did frequently. She'd be pissed off about one thing or another, looking for a fight, and I wasn't exactly in tune enough to avoid her. Unlike my siblings I didn't have friends whose houses I could vanish to for days at a time, so I was stuck with her. She'd want a fight and she'd pick and pick, she'd file her nails in my ears-this is not a sound I can tolerate on the same bus as me, much less right next to my ears-and she'd start calling me disrespectful and yelling and demanding an explanation when I covered my ears. No explanation was ever ok, and she'd keep yelling and yelling until I lost my shit, then she'd keep yelling. Or she'd touch me and it'd startle me and that'd be the most offensive thing in the world, again with the yelling. Or she'd try to have a conversation, but it'd be about why I didn't have friends or couldn't be normal or wasn't girlier or whatever. Then no matter what my answer had a "tone" or my face had a "snotty expression." Nothing I could do was right.
Regardless of the method she used, the result was always a meltdown that would.not.end. She wouldn't back off no matter how I asked, & I wasn't big enough or strong enough to shut the door & keep it closed until I was about 14. She'd keep yelling and poking and trying to argue until I was completely nonverbal, biting myself, and too exhausted to keep crying. Then she'd try to hug me and all I wanted was for her to go. away. but she wouldn't. And she'd tell me it was love and she just wanted to "help me".
A favorite technique during the meltdown provocation procedure was to throw absolutely terrifying threats on top of the sensory poking and the demanding the impossible. The first time she threatened to have me put in foster care I was 7 years old. I believe it was over leaving the room because she was smoking and filing her nails (which she told me she loved more than me when I was 13), but that could be inaccurate. So many minor offenses got this treatment. As I got older she started threatening to have me locked up in a mental ward. I am deathly, deathly terrified of confinement and always have been. My mental images of both foster care and mental hospitals come from a combination of my mother's words and Lifetime television, which did not help the abject terror-and abject terror is not exactly conducive to calming down. My mother later leveraged this fear by instigating meltdowns intentionally-she always did love that game-and then calling police saying she was afraid of me. Now is a possibly relevant time to mention that when I last saw her, she had 4 inches and at least 50 pounds on me. Physically imposing, I am not, and lashing out at people who are not directly touching me is not a thing I ever did.
Ok, so now an interlude to talk about my not-really-dad and his new wife. I still went to visitation over there because we have the same last name and, to his credit, he was pretty awesome until he got remarried. His new wife resented the hell out me though-I still don't know why, really; it's not my fault the guy signed the birth certificate knowing damn well I'm not his.
My not-exactly-stepmom has really delicate little feelings. I have never been the most tactful of souls, and frankly, a grown woman allowing an 11 year old to upset her enough to storm upstairs until said 11 year old apologizes is not the most mature of things. The unpredictability & unreasonably high standards for knowing what would set her off were one thing.
The not allowing me to eat and dragging me antiquing is quite another. I'm not talking "not allowing junky snacks". I'm talking "over 24 hours without food." I'm talking "if you were that hungry you would have apologized for hurting Diane's feelings." It does not work that way. Trying to starve an apology out of a 12 year old is unacceptable. I had a seizure in the antique store-one of very few tonic clonics I've had aside from The Year Of The Seizure. I woke up to being yelled at for being an attention seeking little hobag. Again, I was TWELVE.
Shortly after that her son stuck spitballs on my bedroom door and he blamed me (which makes no sense) so I had to sit in the living room an entire weekend, except breaks every 6 hours to go to the bathroom. Not long after that I hurt her feelings again and she threw a corncob and a glass of wine at me. Another few weeks, and her son was spreading awful shit about me around the neighborhood, he denied it, and then I was again relegated to a chair in the livingroom for...I don't even know what the offense was. Just that apparently there was one.
The last time I went over there I was 14 years old. Stepmonster's sister and nephews were in town. A stepbrother, a nephew, a sister and I were down in the basement by the computer. My stepbrother told my stepcousin (well, semistep people but whatever) that it was really fun to see how far my arm would twist behind my back-this is nothing that I ever let anyone do, ever. So my semistepcousin twisted it, I said nonostopstop, and my semistepbrother told him to twist it further. My arm popped out of my socket.
All the way out of the socket.
Like any child who thinks their parents aren't utter sacks of shit would do, I ran upstairs, arm flopping, totally screaming-I have a high pain threshold, but dislocations that don't immediately reduce hurt like hell. My semistepmother and her sister started yelling at me for being a big baby and making a scene.
My arm was hanging entirely out of its socket. A scene was utterly appropriate.
I begged my not really dad to take me to the hospital to get it fixed. He refused. I begged him to take me home. Again, he refused. I walked 15 miles from his house to my mom's house, in the rain, on the highway, with my dominant arm out of socket.
My mother couldn't take me to the doctor until the next day because she was already drunk. To this day it has some laxity beyond what my other Ehlers-Danlosy joints have.
Now we're back to mom's house. As you may recall, my mom was a hitter. Most people who hit their kids stop when their children get big, strong, and/or bold enough to hit back. But not my mother!
The first time I fought back, I was maybe 12. I didn't even do anything that violent back; she was going to slap me for something and I caught her arm. This is the day I got my first dent in my skull. She was so enraged that I caught her arm that she threw me at my bed-at that point there was nearly a 100 pound weight difference-and jumped on top of me. She banged my head into the metal bedframe multiple times and punched me repeatedly. This is the first time I feared for my life at the hands of my mother.
About that time my stepdad started sexually abusing me as well. He had always been a yeller, which terrified me, but there is no terror like a giant coming to the night to try to make you respect him by using his penis as a weapon. I still have the knife I used to defend myself under my pillow, & carry three physical scars...one for screaming, one for fighting, one for biting.
He wasn't above physical intimidation in broad daylight either. On my 16th birthday I had to jump out the window to get to school because he had his 250 pounds planted against my door, keeping me inside, because I wouldn't bring up my laundry before school started. That was the day I knew my mom knew he was sexually abusing me-she said she did not want to hear anything bad about him unless he was stark naked about to rape me. And then I knew she knew.
But back to my mother. As I got older, and stronger, she wanted me weak. She had always given my siblings lunch money, but I had to earn mine through babysitting. Rarely did I eat school lunch from about 13 on; the option of taking a lunch doesn't work when there's nothing to take. My gymnastics coaches and some teachers took to feeding me, because I drop weight very quickly indeed. By this point most of my siblings were living with their dad or in their own places, so they didn't suffer the no-food-but-Hot-Pockets years.
My mother continued to pick fights, and continued to get physical. She learned restraint for work and thought it was a great idea to pick a fight with me to practice. Let me tell you first hand, it is impossible to breathe. Those are not safe techniques. They are completely not conducive to calming the fuck down. Putting your teenage daughter in a baskethold and dislocating both her shoulders in the process is abuse. Pulling handfuls of her hair out is abuse. Digging a knee into her back is abuse. I feared for my life from the time I was 12 on because of how unpredictable and how physical my mother was willing to be, and over things like sensory issues.
They terrorized me physically, emotionally, and sexually, all while telling me they loved me. They used systems, including the medical and law enforcement systems, to keep me in a state of constant terror. There are other things that aren't on here, there are details I cannot deal with writing out.
Do not dare tell me that parents cannot be monsters. I lived with monsters. I am not a monster for making you think about it. They are monsters for doing it, and anyone who tries to excuse it is as well.
Do not erase my story. Don't fucking dare say this shit doesn't happen. It happens every day.
Wednesday, January 25, 2012
You're disabled & demand access, GTFO.
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.
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.
Thursday, January 12, 2012
Why I am not going to Portland Lindy Exchange
I swing dance (lindy hop). I'm actually a pretty good dancer, if I listen to other people. And I enjoy dancing. So why the hell am I refusing to go to the biggest dance event in my own city?
Because they fucking refuse to even pretend to follow the ADA, that's why. Last year's was the absolute worst weekend of my life--and I have been abused & mistreated & sick in ways that mean I have had some fucking bad weekends, the kind of fucking bad weekends that most people cannot imagine. Bad enough that I am willing to name names and if people's feelings are hurt, they can climb a rope and let go, because 'hurt feelings' are not remotely in the same range.
I refuse to spend that kind of money to be in that kind of danger.
Last year, the Portland Lindy Society's lawyer called me & we had some discussions. She isn't an ADA lawyer, but since she had been to law school she knew what the ADA is and how to read a law (for those who don't know, the ADA is pretty fucking simple to understand anyway). The agreement was that they'd say no flash photography & that they'd have an event photographer who was supposed to be competent enough to not strobe all over & that he'd avoid me. I'm not exactly hard to pick out of a crowd, either; I wear blue glasses-NOT COMMON.
Let me tell you now about Portland Lindy Society's photographer. His name is Evrim Icoz. He is a sack of shit who should never work again. Ever. Hence the name dropping
This guy who knew damn well he was supposed to not use multiflash & was supposed to avoid the petite brunette in the blue glasses & Chun Li buns was always using multiflash within 8 feet of me at a rapid fire pace-not the exact opposite of what Ivy, the lawyer, promised at allllll. So, not knowing this man is an abusive sack of shit, I ask him to not flash in my vicinity, because it's like being stuck in a godsdamned strobelight and that's not acceptable, nor is it within the agreement Portland Lindy Society made with me. And he flashes his flash directly in my face because that's obviously what a professional does in this situation. You don't say "my bad", you don't go photograph somewhere else, you flash a strobe light right in the face of someone who has photosensitive epilepsy that you already knew about! Ethics & professional code say so!
So this guy, Evrim Icoz (seriously, I hope search engines grab this shit because it is not acceptable), he starts yelling at me. I'm kind of already about to seize, it is going to happen, & he follows me into the entryway while I'm looking for someone who has some power-a PLS person, the lawyer, someone. This guy is yelling at me that he doesn't know what the hell is wrong with me, I am a crazy bitch, he hopes I die in hell. You already know what's wrong with me, you sack of crap, and that is why you are supposed to change your behavior. Bet you feel like a big man now, yelling at a disabled woman to die in hell. Oh yeah. Such professional behavior.
If PLS were decent people, they'd have told Evrim he had to leave. Are they decent people? No. No they are not.
On the advice of their lawyer they gave my money back & 'allowed' me to stay. It's the least you can do when the event photographer sends you into a meltdown and a 5 seizure cluster, right? Please please please please don't sue us, Miss K. Here's your money! Keep your wristband! Just oh god oh god don't go to the media! I know our photographer is an abusive dangerous man, but please please please stay we'll be better!
Yeah. So fucking much better. Ask me about the next night!
The dance the next night was extremely crowded. Of course it was-it's a big dance event where the people who think they're hot shit from other dance places come to dance with the people who think they're hot shit from other other dance places, and we mere mortals if they don't realize we're mere mortals. Ok, that's unfair, some people from other places are delightful. Just not the ones who think they're Eris's gift to dancing. Anyway, not the point.
This Evrim guy is there again, strobing again! The lawyer and the powers that are at PLS assured me it was taken care of. They're liars. The guy is, again, suspiciously close to me with his deadly weapon at all times. Then he happens to be close to one of my friends, who ended up stuck with my seizure cluster (poor guy, stuck with all the seizure clusters that Portland dance people cause by refusing to make the simple ADA adjustment of banning flash photography. I'm whiny after a seizure & not exactly cooperative). Evrim decided this was a good time to, in the name of professionalism, shove my friend & try to start a physical fight. Not just any physical fight, but one in the middle of an extremely crowded dance floor. The bit where he told my friend to die in hell was an extra bit of acting like an adult paid to be there, in my opinion.
Then my friend tries, again, to talk to someone from PLS. I'm well on my way back to seizureville-the total for the weekend was over 30 as I recall-and this is unacceptable. The woman who he finds first (maybe not first. Maybe who he was told to talk to. I don't know. Most of my memories of that weekend are snapshot memories & waking up somewhere with a hangover-except I don't drink) decides that the appropriate reaction to having the professionalism of their photographer challenged is to start hyperventilating and saying she was convinced friend was going to hit her. That falls in the category of things I can never ever see happening. Anyway.
After this woman gets herself together, complete with guilt trip & me taking a few trips to Planet Not There, she does...nothing! She says she'll talk to him! She doesn't! He's paid to be there, you see! They can't do anything about him trying to start a physical fight on the dance floor or attacking a paying customer! Because she can't! Because not killing me isn't anywhere near as important as some fucking photographs!
We went and talked to the lawyer that night because of the profound unacceptability of this guy Evrim's actions and the complete denial of responsibility from Desha, the PLS representative. I have no recollection of this meeting; I was so far into seizureland that I just don't know. I seem to recall that the lawyer will no longer work with PLS but that may be faulty memory.
So I will not be spending any money on Portland Lindy Exchange, or indeed Portland Lindy Society, events again. They owe me one hell of an apology, as they have known for nearly a year. Assaulting someone with epilepsy with a strobing flash is not ok. Shoving someone on the dance floor is not ok. Verbally attacking people is not ok. Choosing to support the so called professional who does this rather than your paying customers-extremely not ok, unprofessional, and a great way to lose customers.
I will not pay money ever again to have my physical and emotional well-being put in danger. Portland Lindy Society willfully contributed to physical and emotional abuse of a loyal customer and that is not just unacceptable, it is illegal. I am disabled, I am not less, and I deserve better.
Background for the rageification: I've kind of had it with people being all "but ensuring accessibility is soooo haaaaaaaaaaard" when all they have to do is post a sign or turn their light to solid or whatever. Fuck you. I have to do this shit all day, every day, & so if you think me asking you to enforce a "no flash photography" rule for 3 hours is such a burden, go get a whaaaaamburger & cheese cries, because I do this every damn day & I don't get sympathy for it, I get abuse for daring to stand up for my rights.
Because they fucking refuse to even pretend to follow the ADA, that's why. Last year's was the absolute worst weekend of my life--and I have been abused & mistreated & sick in ways that mean I have had some fucking bad weekends, the kind of fucking bad weekends that most people cannot imagine. Bad enough that I am willing to name names and if people's feelings are hurt, they can climb a rope and let go, because 'hurt feelings' are not remotely in the same range.
I refuse to spend that kind of money to be in that kind of danger.
Last year, the Portland Lindy Society's lawyer called me & we had some discussions. She isn't an ADA lawyer, but since she had been to law school she knew what the ADA is and how to read a law (for those who don't know, the ADA is pretty fucking simple to understand anyway). The agreement was that they'd say no flash photography & that they'd have an event photographer who was supposed to be competent enough to not strobe all over & that he'd avoid me. I'm not exactly hard to pick out of a crowd, either; I wear blue glasses-NOT COMMON.
Let me tell you now about Portland Lindy Society's photographer. His name is Evrim Icoz. He is a sack of shit who should never work again. Ever. Hence the name dropping
This guy who knew damn well he was supposed to not use multiflash & was supposed to avoid the petite brunette in the blue glasses & Chun Li buns was always using multiflash within 8 feet of me at a rapid fire pace-not the exact opposite of what Ivy, the lawyer, promised at allllll. So, not knowing this man is an abusive sack of shit, I ask him to not flash in my vicinity, because it's like being stuck in a godsdamned strobelight and that's not acceptable, nor is it within the agreement Portland Lindy Society made with me. And he flashes his flash directly in my face because that's obviously what a professional does in this situation. You don't say "my bad", you don't go photograph somewhere else, you flash a strobe light right in the face of someone who has photosensitive epilepsy that you already knew about! Ethics & professional code say so!
So this guy, Evrim Icoz (seriously, I hope search engines grab this shit because it is not acceptable), he starts yelling at me. I'm kind of already about to seize, it is going to happen, & he follows me into the entryway while I'm looking for someone who has some power-a PLS person, the lawyer, someone. This guy is yelling at me that he doesn't know what the hell is wrong with me, I am a crazy bitch, he hopes I die in hell. You already know what's wrong with me, you sack of crap, and that is why you are supposed to change your behavior. Bet you feel like a big man now, yelling at a disabled woman to die in hell. Oh yeah. Such professional behavior.
If PLS were decent people, they'd have told Evrim he had to leave. Are they decent people? No. No they are not.
On the advice of their lawyer they gave my money back & 'allowed' me to stay. It's the least you can do when the event photographer sends you into a meltdown and a 5 seizure cluster, right? Please please please please don't sue us, Miss K. Here's your money! Keep your wristband! Just oh god oh god don't go to the media! I know our photographer is an abusive dangerous man, but please please please stay we'll be better!
Yeah. So fucking much better. Ask me about the next night!
The dance the next night was extremely crowded. Of course it was-it's a big dance event where the people who think they're hot shit from other dance places come to dance with the people who think they're hot shit from other other dance places, and we mere mortals if they don't realize we're mere mortals. Ok, that's unfair, some people from other places are delightful. Just not the ones who think they're Eris's gift to dancing. Anyway, not the point.
This Evrim guy is there again, strobing again! The lawyer and the powers that are at PLS assured me it was taken care of. They're liars. The guy is, again, suspiciously close to me with his deadly weapon at all times. Then he happens to be close to one of my friends, who ended up stuck with my seizure cluster (poor guy, stuck with all the seizure clusters that Portland dance people cause by refusing to make the simple ADA adjustment of banning flash photography. I'm whiny after a seizure & not exactly cooperative). Evrim decided this was a good time to, in the name of professionalism, shove my friend & try to start a physical fight. Not just any physical fight, but one in the middle of an extremely crowded dance floor. The bit where he told my friend to die in hell was an extra bit of acting like an adult paid to be there, in my opinion.
Then my friend tries, again, to talk to someone from PLS. I'm well on my way back to seizureville-the total for the weekend was over 30 as I recall-and this is unacceptable. The woman who he finds first (maybe not first. Maybe who he was told to talk to. I don't know. Most of my memories of that weekend are snapshot memories & waking up somewhere with a hangover-except I don't drink) decides that the appropriate reaction to having the professionalism of their photographer challenged is to start hyperventilating and saying she was convinced friend was going to hit her. That falls in the category of things I can never ever see happening. Anyway.
After this woman gets herself together, complete with guilt trip & me taking a few trips to Planet Not There, she does...nothing! She says she'll talk to him! She doesn't! He's paid to be there, you see! They can't do anything about him trying to start a physical fight on the dance floor or attacking a paying customer! Because she can't! Because not killing me isn't anywhere near as important as some fucking photographs!
We went and talked to the lawyer that night because of the profound unacceptability of this guy Evrim's actions and the complete denial of responsibility from Desha, the PLS representative. I have no recollection of this meeting; I was so far into seizureland that I just don't know. I seem to recall that the lawyer will no longer work with PLS but that may be faulty memory.
So I will not be spending any money on Portland Lindy Exchange, or indeed Portland Lindy Society, events again. They owe me one hell of an apology, as they have known for nearly a year. Assaulting someone with epilepsy with a strobing flash is not ok. Shoving someone on the dance floor is not ok. Verbally attacking people is not ok. Choosing to support the so called professional who does this rather than your paying customers-extremely not ok, unprofessional, and a great way to lose customers.
I will not pay money ever again to have my physical and emotional well-being put in danger. Portland Lindy Society willfully contributed to physical and emotional abuse of a loyal customer and that is not just unacceptable, it is illegal. I am disabled, I am not less, and I deserve better.
Background for the rageification: I've kind of had it with people being all "but ensuring accessibility is soooo haaaaaaaaaaard" when all they have to do is post a sign or turn their light to solid or whatever. Fuck you. I have to do this shit all day, every day, & so if you think me asking you to enforce a "no flash photography" rule for 3 hours is such a burden, go get a whaaaaamburger & cheese cries, because I do this every damn day & I don't get sympathy for it, I get abuse for daring to stand up for my rights.
Sunday, December 25, 2011
The Happy Family Meme, Holidays, & Why I Hate December.
I'm pretty convinced the people who push all of these "-insert holiday here- is for families!" ideas have never read the news. Ever.
Newsflash for you people: Some people's families SUCK.
So you make all these days (mostly Christian-chosen holidays, which is a whole other issue) days that what you can do is be with those abusive assholes who you haven't seen since they told you to get a real job or die on the street when you were a teenager, or you can be alone hearing all about how Xmas is all wonderful and yay family who love you and are awesome no matter what.
And to that I say, fuck you.
There are all sorts of myths already about people who have shit-awful families. Didn't you know? It's my fault my parents are abusive. Obviously people from dysfunctional families are unable to love or care or whatever; never trust someone who has no contact with their family because no reason is good enough to justify that because family is family. Someone who has no contact with their family, even if their family is abusive and toxic, is all sorts of indescribable awful. That is the meme. We all are just spiteful and horrible because, don't'cha know, families always are there for each other and love each other. No exceptions.
And to that I say, go fuck yourself. If you want them so badly, you take them.
Then you throw holidays in there. Go spend time with your family, you say. All families love each other, holidays are for family, forgive/forget, I slap your face off and you're still going.
Because our culture refuses to admit that some people are related to shitstains, a holiday is a day where your only choices are:
a) go be abused
b) sit at home hearing how you should be with your family.
Because I don't feel bad enough already about being told I'm subhuman for avoiding those people, I also need to have no options for doing stuff today. It's like society at large is trying to bore & shame me into forgetting that I have parentally-induced dents in my skull.
And I know I am not the only person in this position. It isn't a moral failure to hate your family or hate holidays. You can't really have one without the other very easily, and if you really think it's a moral failure to not like having parentally induced dents in my skull & other PTSDy memories, go fuck yourself.
K
Newsflash for you people: Some people's families SUCK.
So you make all these days (mostly Christian-chosen holidays, which is a whole other issue) days that what you can do is be with those abusive assholes who you haven't seen since they told you to get a real job or die on the street when you were a teenager, or you can be alone hearing all about how Xmas is all wonderful and yay family who love you and are awesome no matter what.
And to that I say, fuck you.
There are all sorts of myths already about people who have shit-awful families. Didn't you know? It's my fault my parents are abusive. Obviously people from dysfunctional families are unable to love or care or whatever; never trust someone who has no contact with their family because no reason is good enough to justify that because family is family. Someone who has no contact with their family, even if their family is abusive and toxic, is all sorts of indescribable awful. That is the meme. We all are just spiteful and horrible because, don't'cha know, families always are there for each other and love each other. No exceptions.
And to that I say, go fuck yourself. If you want them so badly, you take them.
Then you throw holidays in there. Go spend time with your family, you say. All families love each other, holidays are for family, forgive/forget, I slap your face off and you're still going.
Because our culture refuses to admit that some people are related to shitstains, a holiday is a day where your only choices are:
a) go be abused
b) sit at home hearing how you should be with your family.
Because I don't feel bad enough already about being told I'm subhuman for avoiding those people, I also need to have no options for doing stuff today. It's like society at large is trying to bore & shame me into forgetting that I have parentally-induced dents in my skull.
And I know I am not the only person in this position. It isn't a moral failure to hate your family or hate holidays. You can't really have one without the other very easily, and if you really think it's a moral failure to not like having parentally induced dents in my skull & other PTSDy memories, go fuck yourself.
K
Monday, October 24, 2011
Just Don't Use That Word.
Two stories, both from this week, both illustrating how far we need to go in terms of the general public acknowledging that developmentally disabled adults out in public are, like, a thing:
Friday I went rock climbing. The facility has started charging an obscene amount for equipment rental, so my friend and I hit the discount outdoor supply (yeah, this city is so awesome that we have one of those). The guys in the climbing section were awesome-they even found a harness to fit me (I'm in a weird 'tweener size range). They were great, especially given that it was towards closing time on Friday and they were suddenly confronted with several people who all had drastically different needs.
So anyway, even though I was dropping a substantial chunk of change, I was pretty pleased. Then we go to check out & the chick at the register calls her machine r*tarded. Really? Really?! I could feel my climbing buddy wince from 10 feet away.
Don't use that word. It's ableist and unacceptable and hurtful. Oh! but it doesn't mean that! she says. It means slowed down and the meaning has changed and she grew up with foster kids and "worked with those people" and endless stream of justification.
Yeah, no, lady. And developmentally disabled people may be dropping $120 in your store right now and may be very much reconsidering that choice. The correct protocol is to apologize and STFU. And if you call me hun again I am going to slap your face off. The only thing that kept me from walking out was the knowledge that the shoes alone usually run around $200.
Then there was Sunday. As I've blogged about before, I swing dance. I have made some very good friends dancing, and it partially fills a gymnastics-shaped hole in my life. Anyway...
This very nice guy who's been dancing forever brought his nephew or cousin or something (younger male relative, in his earlyish 20s I'd guess). The kid kind of rubs me the wrong way, but whatever, right? There are lots of decent people with whom I just don't mesh, personality-wise. So this dude comes out to Denny's with us after the dance. We played this ridiculous game, Quelf the Card Game-as opposed to Quelf the board game-which involves doing silly, silly things.
Dudeguy pulls a card and says "I won't do this. It's r*t*rd*d." Don't say that word. It's bigoted. "Can I say 't*rd*d?" Well, not if you don't want me to think you're a bigot. Don't spew that hate in front of me.
Insert his not knowing what ableism is here (it's like sexism or racism, except against people with disabilities!). Insert "but I didn't know anyone here is disabled" as a justification here (because it's totes OK if no one is there to be offended, amirite?). Yeah, dude, I'm autistileptic. Nope, your claim of "borderline autism" doesn't impress me-you're still 100% ableist asshat and there's nothing that will justify that.
The guy asked if I'd be offended if he carved "fuck your god" into his arm. Non sequitur much? At this point other people are telling him to just stop, and one friend pointed out that I'm an atheist, if he was going for shock value with that one. I really don't care, it's his arm, though I do wonder what the purpose of doing that would be.
Then we get more word vomit of the R word & "well I don't know what other word to use!" Um. Bullshit. There are lots of other words and after you call me an fing r I have no reason to educate you-you are not worth my time after that. The guy just won't stop with the offensive and my friend tells him he is no longer welcome at our table-I was ready to leave at that point, but apparently I wasn't the one being an asshat?
This guy then goes around with the card that he insists playing would make him look like...well, that word (as though there is no worse fate than the late night crowd at Denny's wondering about you!) and he asks the waiter and all the stoners and other assorted riffraff that frequent Denny's at 1 AM for an adjective that describes the action on the card (please note that I absolutely without reservation consider my group part of that riffraff as well).
He. Asked. The. Waiter. To. Justify. His. Ableist. Hate. Speech.
The waiter was having none of it, fortunately, so this guy just stood at the side of our table for an hour while everyone ignored him. And on his way out he made sure to be vaguely threatening while using the same word about 10 times in one sentence.
But still. Hate speech. He fought that hard for his "right" to use hate speech.
My friends are awesome and wonderful, I must point out. There are so many similar situations where being not-ok with that word is somehow embarrassing or something, and they were pretty solidly "just stop, dude", which is just a symptom of their amazingness.
But this isn't the kind of thing that should happen at all.
In both these situations, people felt they were entitled to use words that the communities they are used against have explicitly said they disapprove of. And then when I, a member of said group, said "that isn't cool" (and according to witnesses, in the kind of way that isn't even offensive, since argument from tone is so damn popular), they felt they had a right to argue their right to use That Word, even though they'd never dream of using similar slurs, because they somehow have the right.
No.
It is not ok to use my people-yep, we're all stuck with each other-as your insult. And you sure as hell have no right to try to argue that because you know a disabled person or don't know that someone is a disabled person it's ok. Your bullshit, it is not flying here.
Friday I went rock climbing. The facility has started charging an obscene amount for equipment rental, so my friend and I hit the discount outdoor supply (yeah, this city is so awesome that we have one of those). The guys in the climbing section were awesome-they even found a harness to fit me (I'm in a weird 'tweener size range). They were great, especially given that it was towards closing time on Friday and they were suddenly confronted with several people who all had drastically different needs.
So anyway, even though I was dropping a substantial chunk of change, I was pretty pleased. Then we go to check out & the chick at the register calls her machine r*tarded. Really? Really?! I could feel my climbing buddy wince from 10 feet away.
Don't use that word. It's ableist and unacceptable and hurtful. Oh! but it doesn't mean that! she says. It means slowed down and the meaning has changed and she grew up with foster kids and "worked with those people" and endless stream of justification.
Yeah, no, lady. And developmentally disabled people may be dropping $120 in your store right now and may be very much reconsidering that choice. The correct protocol is to apologize and STFU. And if you call me hun again I am going to slap your face off. The only thing that kept me from walking out was the knowledge that the shoes alone usually run around $200.
Then there was Sunday. As I've blogged about before, I swing dance. I have made some very good friends dancing, and it partially fills a gymnastics-shaped hole in my life. Anyway...
This very nice guy who's been dancing forever brought his nephew or cousin or something (younger male relative, in his earlyish 20s I'd guess). The kid kind of rubs me the wrong way, but whatever, right? There are lots of decent people with whom I just don't mesh, personality-wise. So this dude comes out to Denny's with us after the dance. We played this ridiculous game, Quelf the Card Game-as opposed to Quelf the board game-which involves doing silly, silly things.
Dudeguy pulls a card and says "I won't do this. It's r*t*rd*d." Don't say that word. It's bigoted. "Can I say 't*rd*d?" Well, not if you don't want me to think you're a bigot. Don't spew that hate in front of me.
Insert his not knowing what ableism is here (it's like sexism or racism, except against people with disabilities!). Insert "but I didn't know anyone here is disabled" as a justification here (because it's totes OK if no one is there to be offended, amirite?). Yeah, dude, I'm autistileptic. Nope, your claim of "borderline autism" doesn't impress me-you're still 100% ableist asshat and there's nothing that will justify that.
The guy asked if I'd be offended if he carved "fuck your god" into his arm. Non sequitur much? At this point other people are telling him to just stop, and one friend pointed out that I'm an atheist, if he was going for shock value with that one. I really don't care, it's his arm, though I do wonder what the purpose of doing that would be.
Then we get more word vomit of the R word & "well I don't know what other word to use!" Um. Bullshit. There are lots of other words and after you call me an fing r I have no reason to educate you-you are not worth my time after that. The guy just won't stop with the offensive and my friend tells him he is no longer welcome at our table-I was ready to leave at that point, but apparently I wasn't the one being an asshat?
This guy then goes around with the card that he insists playing would make him look like...well, that word (as though there is no worse fate than the late night crowd at Denny's wondering about you!) and he asks the waiter and all the stoners and other assorted riffraff that frequent Denny's at 1 AM for an adjective that describes the action on the card (please note that I absolutely without reservation consider my group part of that riffraff as well).
He. Asked. The. Waiter. To. Justify. His. Ableist. Hate. Speech.
The waiter was having none of it, fortunately, so this guy just stood at the side of our table for an hour while everyone ignored him. And on his way out he made sure to be vaguely threatening while using the same word about 10 times in one sentence.
But still. Hate speech. He fought that hard for his "right" to use hate speech.
My friends are awesome and wonderful, I must point out. There are so many similar situations where being not-ok with that word is somehow embarrassing or something, and they were pretty solidly "just stop, dude", which is just a symptom of their amazingness.
But this isn't the kind of thing that should happen at all.
In both these situations, people felt they were entitled to use words that the communities they are used against have explicitly said they disapprove of. And then when I, a member of said group, said "that isn't cool" (and according to witnesses, in the kind of way that isn't even offensive, since argument from tone is so damn popular), they felt they had a right to argue their right to use That Word, even though they'd never dream of using similar slurs, because they somehow have the right.
No.
It is not ok to use my people-yep, we're all stuck with each other-as your insult. And you sure as hell have no right to try to argue that because you know a disabled person or don't know that someone is a disabled person it's ok. Your bullshit, it is not flying here.
Tuesday, May 24, 2011
Streeeeessssssssssssssssssssssss
Hell is other people. Hell is awareness without understanding. Instead of trying to convince me I am a horrible unempathetic (a load of shit, btw) half-human for not being willing to forgive truly shitty things and for not supporting the WAAAAH MY KID IS BROKEN pity party, let's talk about being an autistic adult in the world that this attitude has created.
Please!
Let's start with a school which shall remain nameless. A teacher who shall remain nameless, who was all for me taking his indoor climbing class, knowing I have epilepsy. Then the A-word comes up and he's all "cannot understand risk" and "would be better suited to a yoga class". Yeah no. I don't like yoga. I like high places and getting to use my muscles. I evaluate risk for a living, except without time to think about it. I WAS A HIGH LEVEL GYMNAST AND THIS IS A COMMUNITY COLLEGE CLIMBING CLASS. It is well within my capabilities thank you very fucking much.
Or let's talk about disability services at the school, who argument-from-tone'd me after not listening to me at all, just this teacher. Or the deans who suggested I don't belong in college at all because I am autistic. Citing my GPA would just be ridiculous, given that it's very high, so let's go with ILLEGAL DISABILITY DISCRIMINATION WOOHOO. Or all involved telling people all about my neurology without verbal permission, much less the written consent they legally need to get.
Or let's talk about the never ending "yes, your strobe on your camera is a strobe light too. Yes, it can cause seizures. Yes, it's a dick move to 'forget' to turn it off. Yes, I have as much right to be in public as anyone else" battle. Or let's talk about the event photographer who shoved my friend and aggressively multiflashed in my face, because he takes pictures for money and therefore the rule did not apply to him.
Or let's talk about the bikers who say they're willing to take the risk of MY having a seizure from their strobes because epileptic people don't drive, right? So who really cares?
Or let's talk about the fucker at a pizza place some friends and I go to regularly who said that if the (nonessential to the venue) music choice was a seizure causing problem, we can all just leave. We have thrown paper airplanes and cupcakes and done awful ballet and lindy hopped and built forts in this damn restaurant but OMG NOT TEH BRAIN DIFFERENCES NOOOOOOOOOOOO. Everyone else who goes there might catch it and that'd be a travesty!
Or we can talk about how nothing is ever easy because people make it hard when it doesn't have to be, and when I express frustration it's because who I am is apparently incomplete and not a really real person, but if my parents (who by the way are poor excuses for human beings) were to express frustration about me, or tried to use my neurotype as a reason for being poor excuses for human beings, would get loveyhugs and sympathy. Because they are real people. And I am not.
(there's all the regular stress too--finals, projects before finals, work, med changes, etc. Usually it's tolerable. Now? Not so much. THANKS, AWARENESS!)
Please!
Let's start with a school which shall remain nameless. A teacher who shall remain nameless, who was all for me taking his indoor climbing class, knowing I have epilepsy. Then the A-word comes up and he's all "cannot understand risk" and "would be better suited to a yoga class". Yeah no. I don't like yoga. I like high places and getting to use my muscles. I evaluate risk for a living, except without time to think about it. I WAS A HIGH LEVEL GYMNAST AND THIS IS A COMMUNITY COLLEGE CLIMBING CLASS. It is well within my capabilities thank you very fucking much.
Or let's talk about disability services at the school, who argument-from-tone'd me after not listening to me at all, just this teacher. Or the deans who suggested I don't belong in college at all because I am autistic. Citing my GPA would just be ridiculous, given that it's very high, so let's go with ILLEGAL DISABILITY DISCRIMINATION WOOHOO. Or all involved telling people all about my neurology without verbal permission, much less the written consent they legally need to get.
Or let's talk about the never ending "yes, your strobe on your camera is a strobe light too. Yes, it can cause seizures. Yes, it's a dick move to 'forget' to turn it off. Yes, I have as much right to be in public as anyone else" battle. Or let's talk about the event photographer who shoved my friend and aggressively multiflashed in my face, because he takes pictures for money and therefore the rule did not apply to him.
Or let's talk about the bikers who say they're willing to take the risk of MY having a seizure from their strobes because epileptic people don't drive, right? So who really cares?
Or let's talk about the fucker at a pizza place some friends and I go to regularly who said that if the (nonessential to the venue) music choice was a seizure causing problem, we can all just leave. We have thrown paper airplanes and cupcakes and done awful ballet and lindy hopped and built forts in this damn restaurant but OMG NOT TEH BRAIN DIFFERENCES NOOOOOOOOOOOO. Everyone else who goes there might catch it and that'd be a travesty!
Or we can talk about how nothing is ever easy because people make it hard when it doesn't have to be, and when I express frustration it's because who I am is apparently incomplete and not a really real person, but if my parents (who by the way are poor excuses for human beings) were to express frustration about me, or tried to use my neurotype as a reason for being poor excuses for human beings, would get loveyhugs and sympathy. Because they are real people. And I am not.
(there's all the regular stress too--finals, projects before finals, work, med changes, etc. Usually it's tolerable. Now? Not so much. THANKS, AWARENESS!)
Sunday, April 17, 2011
Being Autistic Is...
In the style of What Epilepsy Is. Like that piece, this one is more about how other people react to autism than what autism itself causes. I'd think that'd be apparent, but one never knows.
Being autistic is being judged.
Being autistic is being yelled at for existing.
Being autistic is being subjected to verbal, physical and emotional abuse for existing.
Being autistic is being at high risk of being killed for existing.
Being autistic is knowing damn well that anyone who hurts or kills you will get away with it.
Being autistic is knowing that the person who hurts or kills you will be a folk hero.
Being autistic is being looked on as a tragedy.
Being autistic is teachers doing everything they can think of, legal and illegal, to make you not their problem.
Being autistic is people being scared of you.
Being autistic is people being scared of you when they haven't even met you.
Being autistic is being looked on as an emergency.
Being autistic is being told that your way of seeing the world is objectively wrong.
Being autistic is being told you have no empathy.
Being autistic is being told that by people who make no effort to see things your way.
Being autistic is being told that your very existence is a danger to you and to others.
Being autistic is being called a burden.
Being autistic is knowing you aren't going to get acceptable medical care.
Being autistic is being assumed incapable of having friends.
Being autistic is people talking to your friends instead of you.
Being autistic is people assuming you are incapable of understanding things.
Being autistic is people hoping you are incapable of understanding things so they can justify excluding you.
Being autistic is people excluding you anyway, because 'autism' is reason enough.
Being autistic is fearing for your job when people find out.
Being autistic is being erased-no one is like you in the media.
Being autistic is people disbelieving you are what you are because there are no autistic adults in the media.
Being autistic is having both your strengths and your weaknesses weaponized against you.
Being autistic is having to qualify everything you say as only applying to you.
Being autistic is doing exactly that, and still having people attack you for 'assuming you speak for [my] child."
Being autistic is doing exactly that and people still demanding you play universal translator.
Being autistic is those same people yelling at you when you tell them something they don't want to hear.
Being autistic is having very personal details of your life demanded of you.
Being autistic is being called 'tantrumming' when you don't answer said invasive questions.
Being autistic is giving 95-97% in every social interaction.
Being autistic is knowing that others resent giving even 3%.
Being autistic is every socialization problem being your fault, for you are the broken one.
Being autistic is knowing that the bullying you are subject to is socially sanctioned and celebrated.
Being autistic is knowing that your successes are resented.
Being autistic is charities that are supposed to help you trying to eliminate you.
Being autistic is being physically attacked at those charities' events for daring to show up.
Being autistic is being assumed to be the aggressor in those and any other situation.
Being autistic is having quack cures constantly shoved down your throat.
Being autistic is knowing that no one wants a child or friend like you.
Being autistic is knowing that if you point out how society treats you, people are going to challenge your anti cure status as disingenuous.
Being autistic is knowing that if you demand equal treatment, people will challenge your support needs.
Being autistic is knowing there is no way to win anything, ever.
Being autistic is fighting to be seen as an actual person.
Being autistic is knowing that fight will not be won in your lifetime.
Being autistic is fighting that fight anyway.
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.
Friday, April 8, 2011
Why I am ritually burning my favorite shirt.
I have a shirt that I love. It fits me well. It says "Schrodinger's cat is dead" on the front, and I'm sure you can figure out what the back says.
I love this shirt probably more than any other article of clothing I've ever had (except maybe the Bambi dress I had from ages 7-9 or so). It looks good, it feels good, I get compliments when I wear it.
So why am I burning it?
Autism Speaks, that's why.
They have cornered the market on getting donations. It sucks. It's unethical, given their fund distribution structure. It's even more unethical, given that they are spreading the tragedy model of autism and the whole "autistic people who have an opinion on autism aren't really autistic---until we need to count them for our scare numbers." It is un-fucking-acceptable.
Step in at my doctor's office. Whatever. I can write to them, they know more about autism than "THINK ABOUT THE CHILDREN!!!".
But this, this is an invasion. Those there are MY PEOPLE. Or I thought ThinkGeek was my people.
Apparently I was wrong. By wearing a TG shirt I am advertising for...well, ThinkGeek.
I am not advertising for anyone who donates to an unethical group that wants to ignore and exterminate me, erase my existence and experience, that plagiarizes me (bonus points for trying to go over my head to an NT for use of a segment on self advocacy. FAIL FOREVER!), that has supporters who threaten me physically, that has private jets and ridiculous offices when so many autistic adults (oh wait, we don't exist) and so many families are barely getting by. I am not advertising for anyone who thinks that's a remotely acceptable group to donate to.
I suspect ThinkGeek really shat where they eat with this one-they likely have an awful lot of autistic customers who share my sentiments.
So, I will be burning my Schrodinger's Cat shirt, a Firefly shirt, a Pi By Numbers shirt, and my ThinkGeek catalog. "You shouldn't exist" is the message sent by donating to Autism Speaks, and the corollary is "we don't want your money."
Wish granted. Not another dime.
I love this shirt probably more than any other article of clothing I've ever had (except maybe the Bambi dress I had from ages 7-9 or so). It looks good, it feels good, I get compliments when I wear it.
So why am I burning it?
Autism Speaks, that's why.
They have cornered the market on getting donations. It sucks. It's unethical, given their fund distribution structure. It's even more unethical, given that they are spreading the tragedy model of autism and the whole "autistic people who have an opinion on autism aren't really autistic---until we need to count them for our scare numbers." It is un-fucking-acceptable.
Step in at my doctor's office. Whatever. I can write to them, they know more about autism than "THINK ABOUT THE CHILDREN!!!".
But this, this is an invasion. Those there are MY PEOPLE. Or I thought ThinkGeek was my people.
Apparently I was wrong. By wearing a TG shirt I am advertising for...well, ThinkGeek.
I am not advertising for anyone who donates to an unethical group that wants to ignore and exterminate me, erase my existence and experience, that plagiarizes me (bonus points for trying to go over my head to an NT for use of a segment on self advocacy. FAIL FOREVER!), that has supporters who threaten me physically, that has private jets and ridiculous offices when so many autistic adults (oh wait, we don't exist) and so many families are barely getting by. I am not advertising for anyone who thinks that's a remotely acceptable group to donate to.
I suspect ThinkGeek really shat where they eat with this one-they likely have an awful lot of autistic customers who share my sentiments.
So, I will be burning my Schrodinger's Cat shirt, a Firefly shirt, a Pi By Numbers shirt, and my ThinkGeek catalog. "You shouldn't exist" is the message sent by donating to Autism Speaks, and the corollary is "we don't want your money."
Wish granted. Not another dime.
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