Readercon, final post: disability
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Jul. 22nd, 2009 | 12:27 pm
The short version: Readercon made me feel like a freak. And not in a good way.
********
Told directly to me:
1. About a nearby grocery store. "You can walk there."
Me: No, I can't.
Congoer: "Of course you can."
Me: (holding table instead of cane, lifting cane) No, really, I can't.
Congoer: "Well, if you insist on just spending more money at the hotel restaurant –"
2. (multiple times) "What did you do to yourself?"
Note the phrasing: what did you do – not "can I ask what's wrong/what happened?" but the phrasing that assumes that I must have done something to be like this, that my illness is my fault. By Saturday I was launching into an explanation to people that weren't asking, as a defense mechanism. Even post the explanation, some people asked, "So what did you do to get this?" By Sunday I was tempted to explain that I'd deliberately asked fate for a rare neurological disorder so that I could become the disability poster child for speculative fiction.
3. (a few times) "You're too thin/too fat to have these problems."
(I think this says more about our culture's obsession with weight than anything.)
4. "Have you tried eating better?"
5. "Why are you dumping salt on your food?" (Ironically, I actually don't do enough of this – I'm supposed to add salt to each meal, but I'm not a salt person, so I forget.) Explanation. "Well, if you really have blood pressure issues you shouldn't be having salt. I'd talk to your doctor."
6. "So, I'm guessing you write about handicapped people, right?"
7. "Disabled protagonists are a really big thing right now. You could make a lot of money."
8. "Hey, let's walk to the mall."
9. "Hey, we're going to walk to…."
10. [After explaining that I felt stalled on my novels] "Have you tried taking a long walk?"
11. I explained to a well meaning person that I needed to sit in the back for the Bad Prose Competition in case I had palpitations and/or dizziness. "Oh, if that happens, we can help you out." I explained that if I had palpitations, I needed to walk as little as possible – thus, I needed to stay near the door. Plus, I did not want to disturb others if I had to leave.
"I don't buy it."
The argument continued until I added that I did not want to fall down in front of potential editors and readers. One of many examples of kindly, well intentioned fail.
12. The words lame, crippled, used to mean "stupid". I actually need to give people a pass here since I'm still learning to avoid using these words in that context myself, but it was still startling to hear two separate people in a panel called "Coping With Diversity" use the words.
13. I'm not my disability. I'm me.
14. I came to Readercon to talk about books. I spent about a third of my time talking about illness and disability.
************
Observed:
If I hid my cane beneath or behind a chair, people would meet my eyes, nod, and sometimes initiate a conversation.
If I had my cane out, I almost always had to be the one to initiate the conversation – although once people knew me, they would wave or nod in my direction or chat. Also, the reactions varied depending upon whether I was walking normally or badly (I do both). This may not have been entirely because of the cane: I met two other people on Friday night who noted that they, too, were struggling to meet people; the guy noted that this was the unfriendliest con he'd ever been to.
But sometimes, I thought I saw people look at the cane, and hurriedly avert their eyes, and then look away. Friday I told myself I was just imagining things because I was feeling like crap.
(Note: when I'm sitting, or when I'm walking normally, I look normal, transforming me into one of those people with invisible disabilities - up until the point where I start having problems walking, or I get very dizzy. And the attitude from some others seemed to change from periods when I looked normal, versus when I was having walking problems.)
*************
Readercon reminded me that I'm not a naturally gregarious person. Years of working in marketing taught me to act gregarious with strangers, but that's a very different thing, and takes effort. Generally I don't mind this – it's how I get to meet people and make friends. But it's difficult when you start walking towards someone who looks at your cane and turns away.
*****
Accessibility:
Unlike other con hotels, the rooms at Readercon are not located directly above the convention area. This forces people to walk down a hallway and back from their hotel rooms to the con area. On Friday (and I realize this was the hotel overbooking) some events were up in hotel rooms, some events on the convention floor, increasing the need to walk. Chairs were placed in rows too narrow for wheelchairs to navigate; panelists sat on wheelchair inaccessible platforms. The Meet the Prose party required non con panelists (and to be fair, some con panelists) to walk around to meet people in a large, poorly lit room. That event, not incidentally, was the lowest moment of the con for me.
On the other hand, not having to navigate through huge crowds was a decided plus.
*********
Overheard, Friday night when I was having problems walking:
"I wouldn't even bother to come to a con if I walked like that."
"You'd think she'd get a wheelchair."
"I guess we're letting the freaks and crips in."
"Higher level of freaks this year."
Overheard, Friday, when I was bringing water to a woman in the bathroom:
"God, why can't people be sick in their rooms?"
(I expect the overheard comments were just a couple of jerks, and I would have brushed them off entirely if not for other issues.)
********
One of the reasons the Saturday singing was so marvelous was that no one there wanted me to do anything else but sing. It was great.
But aside from the singing, I did not feel welcome at/part of the con until I established my semi-pro credentials. As I've suggested, some of this might just have been the naturally cliquish nature of this con where so many of the professionals, semi-pros and longstanding con attendees already know each other. At Mega-Con, in contrast (where I had health issues, but always felt welcome and part of the con) nobody can know everybody or even one-tenth of everybody. Readercon definitely has a more insular feel.
And some of this might stem from my own expectations. I was an unpopular kid in school, and books were my escape. As an adult, books, gaming and cons have continued to be my safety net. I love cons because they are full of people like me. And although I'd gotten dizzy at both SuperCon last year and MegaCon this year – I'd still had fun. I'd still been part of the con.
And, I have to be honest here: part of the problem was knowing that some of these comments, and certainly the lame/crippled language, were the exact sorts of comments I might have said or thought once. Facing my own failures is kinda painful.
***********
Obligatory disclaimers:
1. This by NO MEANS describes everyone at Readercon. The majority of people I spoke to were awesome.
2. I freely admit that many of my reactions might have come from just feeling like crap all day Friday; as I earlier mentioned, it's rough to watch other people having fun when you're feeling awful. And let's face it: you're going to run into jerks everywhere. Also, I may well be a bit spoiled, since I live in a neighborhood where disabled people are commonplace and not worthy of a second glance.
3. So yes, I'd not only recommend Readercon; time and finances permitting, I'd like to go back, although if, as I fear, finances allow only one con next year, it will probably be World Fantasy Con.
After all, I got to talk to Samuel Delany and Gene Wolfe and Ellen Kushner and Delia Sherman and a host of other marvelous and brilliant people, and got to put faces to editors and chat with editors and get to hear the other side of the submission process and chat with several other hopeful writers about the submission process (which made me feel much better) and writing flash fiction and various ideas for integrating the internet and html coding into fiction (I'm still thinking about this one) and exploring more ideas for print and so on. The con was full of Good Things, and I loved the quieter, laid back atmosphere, and the chance to talk quietly with writers. One of the many reasons why this post was painful to write; I do not like the Good Things tainted by the actions of a few.
(Also, I kept trying to look for jokes, and couldn't. But humor shall be returning to this blog soon! I decree it!)
********
Told directly to me:
1. About a nearby grocery store. "You can walk there."
Me: No, I can't.
Congoer: "Of course you can."
Me: (holding table instead of cane, lifting cane) No, really, I can't.
Congoer: "Well, if you insist on just spending more money at the hotel restaurant –"
2. (multiple times) "What did you do to yourself?"
Note the phrasing: what did you do – not "can I ask what's wrong/what happened?" but the phrasing that assumes that I must have done something to be like this, that my illness is my fault. By Saturday I was launching into an explanation to people that weren't asking, as a defense mechanism. Even post the explanation, some people asked, "So what did you do to get this?" By Sunday I was tempted to explain that I'd deliberately asked fate for a rare neurological disorder so that I could become the disability poster child for speculative fiction.
3. (a few times) "You're too thin/too fat to have these problems."
(I think this says more about our culture's obsession with weight than anything.)
4. "Have you tried eating better?"
5. "Why are you dumping salt on your food?" (Ironically, I actually don't do enough of this – I'm supposed to add salt to each meal, but I'm not a salt person, so I forget.) Explanation. "Well, if you really have blood pressure issues you shouldn't be having salt. I'd talk to your doctor."
6. "So, I'm guessing you write about handicapped people, right?"
7. "Disabled protagonists are a really big thing right now. You could make a lot of money."
8. "Hey, let's walk to the mall."
9. "Hey, we're going to walk to…."
10. [After explaining that I felt stalled on my novels] "Have you tried taking a long walk?"
11. I explained to a well meaning person that I needed to sit in the back for the Bad Prose Competition in case I had palpitations and/or dizziness. "Oh, if that happens, we can help you out." I explained that if I had palpitations, I needed to walk as little as possible – thus, I needed to stay near the door. Plus, I did not want to disturb others if I had to leave.
"I don't buy it."
The argument continued until I added that I did not want to fall down in front of potential editors and readers. One of many examples of kindly, well intentioned fail.
12. The words lame, crippled, used to mean "stupid". I actually need to give people a pass here since I'm still learning to avoid using these words in that context myself, but it was still startling to hear two separate people in a panel called "Coping With Diversity" use the words.
13. I'm not my disability. I'm me.
14. I came to Readercon to talk about books. I spent about a third of my time talking about illness and disability.
************
Observed:
If I hid my cane beneath or behind a chair, people would meet my eyes, nod, and sometimes initiate a conversation.
If I had my cane out, I almost always had to be the one to initiate the conversation – although once people knew me, they would wave or nod in my direction or chat. Also, the reactions varied depending upon whether I was walking normally or badly (I do both). This may not have been entirely because of the cane: I met two other people on Friday night who noted that they, too, were struggling to meet people; the guy noted that this was the unfriendliest con he'd ever been to.
But sometimes, I thought I saw people look at the cane, and hurriedly avert their eyes, and then look away. Friday I told myself I was just imagining things because I was feeling like crap.
(Note: when I'm sitting, or when I'm walking normally, I look normal, transforming me into one of those people with invisible disabilities - up until the point where I start having problems walking, or I get very dizzy. And the attitude from some others seemed to change from periods when I looked normal, versus when I was having walking problems.)
*************
Readercon reminded me that I'm not a naturally gregarious person. Years of working in marketing taught me to act gregarious with strangers, but that's a very different thing, and takes effort. Generally I don't mind this – it's how I get to meet people and make friends. But it's difficult when you start walking towards someone who looks at your cane and turns away.
*****
Accessibility:
Unlike other con hotels, the rooms at Readercon are not located directly above the convention area. This forces people to walk down a hallway and back from their hotel rooms to the con area. On Friday (and I realize this was the hotel overbooking) some events were up in hotel rooms, some events on the convention floor, increasing the need to walk. Chairs were placed in rows too narrow for wheelchairs to navigate; panelists sat on wheelchair inaccessible platforms. The Meet the Prose party required non con panelists (and to be fair, some con panelists) to walk around to meet people in a large, poorly lit room. That event, not incidentally, was the lowest moment of the con for me.
On the other hand, not having to navigate through huge crowds was a decided plus.
*********
Overheard, Friday night when I was having problems walking:
"I wouldn't even bother to come to a con if I walked like that."
"You'd think she'd get a wheelchair."
"I guess we're letting the freaks and crips in."
"Higher level of freaks this year."
Overheard, Friday, when I was bringing water to a woman in the bathroom:
"God, why can't people be sick in their rooms?"
(I expect the overheard comments were just a couple of jerks, and I would have brushed them off entirely if not for other issues.)
********
One of the reasons the Saturday singing was so marvelous was that no one there wanted me to do anything else but sing. It was great.
But aside from the singing, I did not feel welcome at/part of the con until I established my semi-pro credentials. As I've suggested, some of this might just have been the naturally cliquish nature of this con where so many of the professionals, semi-pros and longstanding con attendees already know each other. At Mega-Con, in contrast (where I had health issues, but always felt welcome and part of the con) nobody can know everybody or even one-tenth of everybody. Readercon definitely has a more insular feel.
And some of this might stem from my own expectations. I was an unpopular kid in school, and books were my escape. As an adult, books, gaming and cons have continued to be my safety net. I love cons because they are full of people like me. And although I'd gotten dizzy at both SuperCon last year and MegaCon this year – I'd still had fun. I'd still been part of the con.
And, I have to be honest here: part of the problem was knowing that some of these comments, and certainly the lame/crippled language, were the exact sorts of comments I might have said or thought once. Facing my own failures is kinda painful.
***********
Obligatory disclaimers:
1. This by NO MEANS describes everyone at Readercon. The majority of people I spoke to were awesome.
2. I freely admit that many of my reactions might have come from just feeling like crap all day Friday; as I earlier mentioned, it's rough to watch other people having fun when you're feeling awful. And let's face it: you're going to run into jerks everywhere. Also, I may well be a bit spoiled, since I live in a neighborhood where disabled people are commonplace and not worthy of a second glance.
3. So yes, I'd not only recommend Readercon; time and finances permitting, I'd like to go back, although if, as I fear, finances allow only one con next year, it will probably be World Fantasy Con.
After all, I got to talk to Samuel Delany and Gene Wolfe and Ellen Kushner and Delia Sherman and a host of other marvelous and brilliant people, and got to put faces to editors and chat with editors and get to hear the other side of the submission process and chat with several other hopeful writers about the submission process (which made me feel much better) and writing flash fiction and various ideas for integrating the internet and html coding into fiction (I'm still thinking about this one) and exploring more ideas for print and so on. The con was full of Good Things, and I loved the quieter, laid back atmosphere, and the chance to talk quietly with writers. One of the many reasons why this post was painful to write; I do not like the Good Things tainted by the actions of a few.
(Also, I kept trying to look for jokes, and couldn't. But humor shall be returning to this blog soon! I decree it!)

(no subject)
from:
kate_nepveu
date: Jul. 22nd, 2009 04:53 pm (UTC)
Link
Thank you for writing this.
Between this and seeing the Wiscon statement on accessibility ( http://www.wiscon.info/access.php ), well, count those as large clues on just how bad Readercon was and how much better it could be.
it was still startling to hear two separate people in a panel called "Coping With Diversity" use the words.
Oh, ow, I don't think I noticed that.
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(no subject)
from:
mariness
date: Jul. 22nd, 2009 11:56 pm (UTC)
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from:
kellinator
date: Jul. 22nd, 2009 04:54 pm (UTC)
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from:
mariness
date: Jul. 23rd, 2009 12:00 am (UTC)
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Unfortunately, I won't be able to go this year to report.
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from:
tithenai
date: Jul. 22nd, 2009 04:57 pm (UTC)
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May I link to this? I have yet to write anything about Readercon because I've had Jess over, but I think this is hugely, hugely important to show people.
Please tell me if I in any way, however inadvertantly, contributed to the above. The part about people not meeting your eyes when you had your cane in particular disturbs me, and I want to know if I ever did it unconsciously.
6. "So, I'm guessing you write about handicapped people, right?"
7. "Disabled protagonists are a really big thing right now. You could make a lot of money."
*TWITCH*
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from:
mariness
date: Jul. 23rd, 2009 12:14 am (UTC)
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I'm really puzzled about the comments made about disabled protagonists; unless we're counting paranormal sexy vampires as disabled, I don't think this is even remotely true from a sales perspective, at least. I do vaguely recall someone in a wheelchair in the Twilight movie, but he wasn't a main character. And outside of Verb Noire, which is a small press, I can't think of any publisher actively seeking disabled protagonists - I'm not saying that they'd turn down a book with a disabled protagonist, just that it's not an active search.
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from:
oldcharliebrown
date: Jul. 22nd, 2009 05:02 pm (UTC)
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from:
mariness
date: Jul. 23rd, 2009 12:17 am (UTC)
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And, to clarify, the con wasn't all bad; if I don't come next year it's more because I can only afford one con (well, one con plus a few hours at MegaCon, which is within taxi distance of me).
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from:
jfargo
date: Jul. 22nd, 2009 05:14 pm (UTC)
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See, I'm one of the people that looks away.
I don't mean to hurt anyone's feelings, but my base, initial reaction, is that when I see the cane, or see somebody walking oddly for whatever reason, I look away. Frankly, I don't want anyone to think I'm staring. If I meet their eyes, I'll smile and nod, but if I don't think the person has seen me looking, I don't want to make them feel bad, so I quickly look elsewhere.
It never really occurred to me that that might be making it worse. I know that's foolish, but it just didn't pop into my head.
So, I'll try to do more smiling and nodding from now on. Thank you for drawing my attention to how I've been behaving.
Sorry about writing this here. I felt I had to say something, because ... I don't know. Just because.
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from:
cardinalximinez
date: Jul. 22nd, 2009 06:25 pm (UTC)
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from:
csecooney
date: Jul. 22nd, 2009 05:20 pm (UTC)
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On the whole, I was VERY glad to meet you, very glad you found me on the LJ, and very glad to have the opportunity to sit with you and Gene over muffins.
Brave post. I like discovering heroism in my newfound friends. It makes everything seem slightly more hopeful.
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from:
csecooney
date: Jul. 22nd, 2009 05:20 pm (UTC)
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from:
time_shark
date: Jul. 22nd, 2009 05:33 pm (UTC)
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from:
mariness
date: Jul. 23rd, 2009 12:25 am (UTC)
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from:
erzebet
date: Jul. 22nd, 2009 05:35 pm (UTC)
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from:
mariness
date: Jul. 23rd, 2009 12:27 am (UTC)
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I really do think and hope that those people were major aberrations; it's really not something I encountered before, and I hope it's not because I just wasn't listening.
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from:
alaneer
date: Jul. 22nd, 2009 06:06 pm (UTC)
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I have just caught myself the other day asking my friends if "lame" was an accepted word to use to describe a girl who is limping. In a story.
And thank you for sharing all this.
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from:
mariness
date: Jul. 23rd, 2009 12:30 am (UTC)
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(And I still rather regret losing the old meaning of "gay" but we're far past that now.)
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from:
penguinicity
date: Jul. 22nd, 2009 06:37 pm (UTC)
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Thank you for posting
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from:
mariness
date: Jul. 23rd, 2009 12:30 am (UTC)
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from:
sylvar
date: Jul. 22nd, 2009 06:41 pm (UTC)
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ObTshirt: http://img2.moonbuggy.org/imgstore/ambe
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from:
mariness
date: Jul. 23rd, 2009 12:33 am (UTC)
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The panelists - actually audience members - didn't have any visible disabilities, but that doesn't necessarily mean anything.
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(no subject)
from:
mmerriam
date: Jul. 22nd, 2009 07:11 pm (UTC)
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7. "Disabled protagonists are a really big thing right now. You could make a lot of money."
I get this one from time to time. And while I do write about disabled people in my fiction, it is only a part of what I write about.
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from:
mariness
date: Jul. 23rd, 2009 12:38 am (UTC)
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This isn't to say that publishers won't publish stories/novels with disabled protagonists, just that I don't think they look at this as a selling point, or that it's something that they're actively looking for.
(With the exception of Verb Noire, a small press that I believe is actively looking for disabled characters.)
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from:
wirewalking
date: Jul. 22nd, 2009 07:48 pm (UTC)
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Singing night was awesome. Next time I shall have learned more songs so I can join in for proper. And as Amal also said, please let me know if I in any way contributed to the things in your post. (It did occur to me after the fact that I wasn't as talky toward you or Shira at the Goblin Fruit party as I'd've liked, which was everything to do with me -- cranky baby, fried brain, 60 people in a hotel room and not being able to hear myself think -- and nothing to do with either of you. I do hope that wasn't misconstrued.)
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from:
mariness
date: Jul. 23rd, 2009 12:42 am (UTC)
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And actually all of Thursday was fine - it was Friday where the fail started to happen.
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from:
jeremytblack
date: Jul. 22nd, 2009 08:55 pm (UTC)
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That particular statement boggles.
I hate that situation particularly because YOU KNOW WHAT YOU NEED. I hate it when people think they, in two seconds of knowing you, know best about how to handle whatever your situation is than you do. Agh!
I had those leg braces like Forest Gump wore for a time during my adolescence. Without that experience, I don't know if I would have developed "sensitivity" toward people's different health-related situations. But man did the world treat me terribly during that time. You don't generally see it if you don't experience it, or experience someone you care about experiencing it.
Take care.
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from:
mariness
date: Jul. 23rd, 2009 12:50 am (UTC)
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from:
chattycatsmeow
date: Jul. 22nd, 2009 10:15 pm (UTC)
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from:
mariness
date: Jul. 23rd, 2009 12:50 am (UTC)
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from:
mr_perker
date: Jul. 23rd, 2009 12:24 am (UTC)
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from:
mariness
date: Jul. 23rd, 2009 12:50 am (UTC)
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from:
shadefell
date: Jul. 23rd, 2009 12:54 am (UTC)
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"You're right. I'm faking it for the attention, fame, and glory."
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from:
mariness
date: Jul. 23rd, 2009 01:07 am (UTC)
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from:
funkyturtle
date: Jul. 23rd, 2009 08:57 am (UTC)
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from:
mariness
date: Jul. 23rd, 2009 04:52 pm (UTC)
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But that's really not the point. And while I realize that this comment was well intentioned, you are directly illustrating my point. Do you realize what you've written here?
If you'd done X [put stickers on the cane], then Y [people's reactions] wouldn't have happened. In other words, you are suggesting that because I failed to do something that I was not comfortable doing in the first place, I am responsible for the negative reactions of people I encountered at the con.
Screw that.
I should not have to put stickers on my cane to be accepted as a normal person.
I have been disabled for well over a year, and this - at a con, a supposed place of safety - was the first time I have EVER had to bring up this issue. The mundane residents of Winter Garden, Florida, have no problems treating me like a normal person, whether I'm using the cane, in the wheelchair, or on my trike. As did people at MegaCon and Supercon. Nobody blinks twice when I go to the movies, and so on.
Then we get to a few other issues, like, why on earth would I want to come to a con to talk about my cane? Or the fact that I was also walking around with a teddy bear backpack, which did draw smiles and conversations when I was sitting down, or when I hid the cane, or when I spoke first. Having that while I was walking around did nothing (and it's far more visible than stickers on a cane.)
And finally, the problem that this sort of thing feeds into the lovely myth that it's all about the attitude, not the disability, that if only we do things to make our disabilities "cool" and "acceptable" that everything will be all right. This is a lovely thought, and yes, I love my motorized trike, which does get comments from people considering giving up their cars or with disabled family/friends, but putting stickers on my cane will not keep the world from rocking beneath me at unexpected moments.
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from:
rax
date: Jul. 23rd, 2009 11:18 am (UTC)
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Thank you for sharing this! I've bookmarked it for the next time I need to think about access issues at cons. I'm sorry you had these bad experiences and I hope to run into you at ReaderCon next year.
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from:
mariness
date: Jul. 23rd, 2009 04:53 pm (UTC)
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from:
malterre
date: Jul. 23rd, 2009 02:07 pm (UTC)
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from:
mariness
date: Jul. 23rd, 2009 04:54 pm (UTC)
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from:
jackolantern
date: Jul. 23rd, 2009 05:05 pm (UTC)
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I'm neither a violent person nor in particularly good shape (nor do I think that you'd take me up on it), but if I'd been there I'd have felt compelled to make a sincere offer to beat these people, possibly including the old schoolyard favorite "Stop hitting yourself!"
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from:
jackolantern
date: Jul. 23rd, 2009 05:14 pm (UTC)
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And again. (Although I have to confess that I've used "lame" as well.)
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from:
wyldemusick
date: Jul. 23rd, 2009 05:36 pm (UTC)
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I'm sorry you had such reactions...while it's fodder for the work, it's still frustrating and painful for you.
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from:
mariness
date: Jul. 23rd, 2009 07:21 pm (UTC)
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I do also think that part of it is context - this is not an attitude I've encountered at all locally, but, Florida has a lot of people who use wheelchairs and canes; I usually end up passing or waving at a couple of people in electric wheelchairs each time I go to the grocery store. So here it's extremely commonplace, and since I usually don't look that disabled, especially compared to others, people treat me as normal. I'm somewhat inclined to lean towards this theory since this certainly wasn't an issue at MegaCon - and at Universal Studios people paid so little attention to the wheelchair that they'd walk right into it and C and S had some problems steering me around heedless people.
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(no subject)
from:
cristalia
date: Jul. 23rd, 2009 05:45 pm (UTC)
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FWIW, I was really glad to meet you, and if I did or said anything that contributed to all this, I'm really sorry. I know I was a bit fried after the singing when we were in the con suite, and I hope that didn't read like putting you off.
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from:
mariness
date: Jul. 23rd, 2009 07:21 pm (UTC)
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from:
stronae
date: Jul. 23rd, 2009 05:50 pm (UTC)
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from:
mariness
date: Jul. 23rd, 2009 10:08 pm (UTC)
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from:
cucumberseed
date: Jul. 23rd, 2009 06:42 pm (UTC)
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The comments you mention are inexcusable, first to last. I'm very sorry that people were so miserable and rude. I will listen for them next year and years after, and I won't hesitate to call anyone out on what they say if they decide to behave like such louts.
Anyway, I hope you are not turned off to the experience; like I said, I hope to meet you sometime at a con.
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from:
mariness
date: Jul. 24th, 2009 03:01 am (UTC)
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