Success stories
Sat, Jul. 10th, 2010 07:17 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
duskpeterson posting in ![[community profile]](https://www.dreamwidth.org/img/silk/identity/community.png){kind=small}
access_fandomThere've been so many horror stories floating around fandom recently about prejudice against disabled folk that I thought I'd offer, as a sort of thank-you note, my own experiences in fandom, in regards to my disabilities.
1) First fanfic con I went to, in 2002, I asked the organizer whether large-print programs would be available. She said she hadn't planned to offer them, and would I like her to send me the electronic text beforehand, so that I could print it out in whatever type I liked? I explained that my printer was currently defunct, and she said she'd make sure she had a large-print program ready for me at the con.
2) First time I bought a printed zine (it was a one-author zine), I wrote to the author and explained that I couldn't currently read standard-sized print - this was back in the days before I had an OCR program and scanner - and would she mind sending me an electronic copy of her story, since I'd bought the printed zine? She promptly sent it to me.
3) First time I bought a CD zine, I discovered that it was in PDF format, which I can't easily read. I wrote to the editor; she promptly sent me the Word versions of the stories, asked my advice on redesigning the zine and the accompanying Website, and recruited me to write for the zine.
4) In post-con feedback, I mentioned that I found it hard to read the name badges because the names were so small. The con committee member who responded explained that some con attendees are shy and prefer to have small badge names . . . but at the next con, the badges were blank, with lots of colorful markers on hand, so that people could make their names as large or small as they liked.
5) On the fan list of a fanficcer-turned-pro, someone mentioned that he was blind. The pro promptly offered to send him an electronic manuscript copy of her latest novel. I, arriving late into this discussion, sent her a private e-mail explaining that I, too, was visually impaired, and while I had a scanner now, her books were in mass-market paperbacks that were difficult to scan, so could I have an electronic copy of her latest novel too? She sent me copies of all her novels. Including the original manuscript of a novel that had had a third of it chopped out by an editor who didn't like character development or (apparently) references to homosexuality. I got to see the original version in all its unmutilated glory.
6) A fanficcer-turned-semi-pro asked for comments on their new Website. I wrote to them, explaining that parts of their Website were inaccessible to people reading very large print. The author rewrote the code that very night.
7) I encountered that same semi-pro several years later, at a con. By then, I think they'd forgotten our earlier conversation, but when they learned that I was partially sighted, they handed me one of a set of bookmarks they'd had made in braille. Then they told me that they self-published some of their novels in large print, and priced the large-print editions the same as the regular-sized novels, even though the large-print novels took up twice the number of pages, "because I don't think disabled readers should have to pay a penalty for being disabled."
8) Another fanficcer-turned-semi-pro also made the effort to issue their novels in large print. When they learned that I was partially sighted, they sent me an electronic copy of one of the novels, so that I could offer feedback on the design.
9) This year, I acquired a medical condition in which I cannot sit or stand still for long; when I'm not lying down, it's safest for me to be walking. (By the way, I haven't tagged for this second disability because I haven't figured out what the heck "not being able to sit down or stand still" is called. Anyone have any suggestions?) I wrote to a con committee and asked whether it would be a problem for me to pace up and down at the back of the rooms during panels. While asking for reassurance - quite naturally - that I hadn't been struck down with a communicable disease that I could pass on to the other attendees, they said that I was quite welcome to attend the con in that fashion, and that they'd make sure there was pacing space for me in each of the panel rooms. I had a great time at the con, and barely noticed my disability, because I was so easily integrated into the con.
o--o--o
I've been quite pleased when the requests I made had an impact on the long-term policies of the individuals or organizations. But even in the cases of one-time assistance, I'm struck by the unfailing desire I've encountered of people wishing to help.
Reading the recent stories about disabled people in fandom, I gather I've been very, very lucky. That makes me all the more grateful.
1) First fanfic con I went to, in 2002, I asked the organizer whether large-print programs would be available. She said she hadn't planned to offer them, and would I like her to send me the electronic text beforehand, so that I could print it out in whatever type I liked? I explained that my printer was currently defunct, and she said she'd make sure she had a large-print program ready for me at the con.
2) First time I bought a printed zine (it was a one-author zine), I wrote to the author and explained that I couldn't currently read standard-sized print - this was back in the days before I had an OCR program and scanner - and would she mind sending me an electronic copy of her story, since I'd bought the printed zine? She promptly sent it to me.
3) First time I bought a CD zine, I discovered that it was in PDF format, which I can't easily read. I wrote to the editor; she promptly sent me the Word versions of the stories, asked my advice on redesigning the zine and the accompanying Website, and recruited me to write for the zine.
4) In post-con feedback, I mentioned that I found it hard to read the name badges because the names were so small. The con committee member who responded explained that some con attendees are shy and prefer to have small badge names . . . but at the next con, the badges were blank, with lots of colorful markers on hand, so that people could make their names as large or small as they liked.
5) On the fan list of a fanficcer-turned-pro, someone mentioned that he was blind. The pro promptly offered to send him an electronic manuscript copy of her latest novel. I, arriving late into this discussion, sent her a private e-mail explaining that I, too, was visually impaired, and while I had a scanner now, her books were in mass-market paperbacks that were difficult to scan, so could I have an electronic copy of her latest novel too? She sent me copies of all her novels. Including the original manuscript of a novel that had had a third of it chopped out by an editor who didn't like character development or (apparently) references to homosexuality. I got to see the original version in all its unmutilated glory.
6) A fanficcer-turned-semi-pro asked for comments on their new Website. I wrote to them, explaining that parts of their Website were inaccessible to people reading very large print. The author rewrote the code that very night.
7) I encountered that same semi-pro several years later, at a con. By then, I think they'd forgotten our earlier conversation, but when they learned that I was partially sighted, they handed me one of a set of bookmarks they'd had made in braille. Then they told me that they self-published some of their novels in large print, and priced the large-print editions the same as the regular-sized novels, even though the large-print novels took up twice the number of pages, "because I don't think disabled readers should have to pay a penalty for being disabled."
8) Another fanficcer-turned-semi-pro also made the effort to issue their novels in large print. When they learned that I was partially sighted, they sent me an electronic copy of one of the novels, so that I could offer feedback on the design.
9) This year, I acquired a medical condition in which I cannot sit or stand still for long; when I'm not lying down, it's safest for me to be walking. (By the way, I haven't tagged for this second disability because I haven't figured out what the heck "not being able to sit down or stand still" is called. Anyone have any suggestions?) I wrote to a con committee and asked whether it would be a problem for me to pace up and down at the back of the rooms during panels. While asking for reassurance - quite naturally - that I hadn't been struck down with a communicable disease that I could pass on to the other attendees, they said that I was quite welcome to attend the con in that fashion, and that they'd make sure there was pacing space for me in each of the panel rooms. I had a great time at the con, and barely noticed my disability, because I was so easily integrated into the con.
o--o--o
I've been quite pleased when the requests I made had an impact on the long-term policies of the individuals or organizations. But even in the cases of one-time assistance, I'm struck by the unfailing desire I've encountered of people wishing to help.
Reading the recent stories about disabled people in fandom, I gather I've been very, very lucky. That makes me all the more grateful.
(no subject)
Date: 2010-07-10 11:32 pm (UTC)Potential trigger: Brief description of medical condition
Date: 2010-07-10 11:58 pm (UTC)Chronic edema paired with tactile hyperesthesia, both outer and inner. In a word, if I stay in one position I swell, and if the swollen part is touching anything, it hurts. My buttocks are swollen all the time, darn it; hence my virtual inability to sit. (I'm typing this in a reclined position.)
No diagnosis yet, alas. It could just be edema as a condition on its own, or it could be caused by some underlying disease.
"I can't stand still for more than a couple of minutes, or sit for very long because my hips like to dislocate..."
Comrade! Would you be interested in talking by e-mail? I'd love to learn what your coping mechanisms are, in case I can learn from them.
Re: Potential trigger: Brief description of medical condition
Date: 2010-07-11 12:09 am (UTC)-- For me, the issue is hypermobility Ehlers-Danlos syndrome - like
(no subject)
Date: 2010-07-11 12:09 am (UTC)(no subject)
Date: 2010-07-11 02:34 am (UTC)Oh, I didn't even mention - though I certainly ought to have - the tremendous, inspiring support I received from my blog readers (most of whom are from the fan community) when my health was spiralling downhill this spring. They were posting suggestions on what illnesses I might have my doctor check on, telling me that they were checking my blog daily to see what my condition was, posting message after message of sympathy and encouragement . . . Along with my apprentice, they were my emotional lifeline.
(no subject)
Date: 2010-07-11 04:17 pm (UTC)(no subject)
Date: 2010-07-12 02:15 pm (UTC)