Post by ruthmadison on Jan 7, 2011 11:06:59 GMT -5
I thought it might be helpful for me to chronicle my experiences telling people about being a dev. This will probably be quite long!
To start with, I spent my childhood assuming that I was the only one and I believed that I was being punished for some sin in a past life. As a teenager I would go to the local library and look for books about disability, but I didn't dare check them out, so I read them there, hidden in the stacks. One day I found a newsletter with information for people with disabilities in the area. I took one and I kept going back and picking it up when it came out. Eventually I thought, I'm really benefiting from this newsletter, I should give back in some way.
I looked up the address on the back and had my dad drive me over. It was being produced out of the barn on someone's property. Her name was Nancy and she was probably in her late 60s. She had a deaf daughter and a son with muscular dystrophy. I told her that I wanted to help out. So I started volunteering after school.
I learned a ton from her. That was my introduction to disability politics. She also had a subscription to New Mobility magazine and I read it when there weren't other things for me to do. In one issue I read, there was an article about devoteeism.
That was my first discovery that there was a word for it, that it was a known thing. I was 17 years old. I started formulating the plot for (W)hole at that point. It was extremely different back then. It was much more negative as well as complicated, there were four different character plotlines and Elizabeth ends up committing murder. But anyway, that's not the point of this post.
I went off to college still without having told anyone. My freshman year I met a man that I really liked and we clicked well. We never dated, he was an evangelical Christian and I was not, but we formed a wonderful friendship. He made me feel comfortable and safe and okay to be myself.
One day I decided to tell him about this. I remember we went for a walk, we were next to a big gray rock when I said I thought that God was punishing me. I don't remember exactly what he said, but he still accepted me and still loved me and that was a tremendous relief. We both thought it would be best for me not to act on these feelings, looking at it the same way that evangelical Christianity tends to look at homosexuality.
I felt like a huge weight was lifted, I felt euphoric from breaking the secrecy. It wasn't just in my head eating away at me anymore. I decided that secrecy was a bad thing and I've never been able to keep a secret since.
I wrote an email to my parents telling them that I knew they were aware that I had always been interested in disability and I told them that the truth was that it was sexual. I also sent an email to Nancy. Nancy and I had been keeping in touch a little bit since I left for college. I had gone back and visited and she had continued to mentor me, but after that email I never heard from her again. My parents didn't really respond and we didn't talk about it at that time.
I can't remember when I told my best college friend, Ilana. She and I were always talking about boys and relationships and sex, though. We thought very alike and I always felt very comfortable saying absolutely anything that came into my head to her.
The summer after freshman year, back home with my two best friends, I knew I wanted to share it with them too. No secrecy between us. We got together at one's house and I stuttered and shook and cried while I told them that there was a reason why I was interested in disability, that I was attracted to it. They both thought it wasn't so bad, in fact it just made them finally understand why I liked the movies I liked, etc. They said, “It makes so much sense now.” They shared their own relationship adventures from college. None of us had ever dated before and we never talked about boys or crushes. They both had boyfriends freshman year and I did not.
Over the years, the book has been a great opening for talking about it. In a way that's a bad thing, because I don't have a choice. I want to market and sell my book, but when I tell people I've written a book they want to know what it's about. “Well, it's about a girl who is attracted to disability,” I say. “Seriously?” They say, “Is that a real thing?” And then I have a choice.
Sometimes I tell them that it is a real thing that I read about in a magazine and decided to write about and sometimes I tell them that it is something I have. When I tell people the first thing, the reaction is always one of uncomfortableness and disgust. But when I tell people the second I hear much more positive things. Because they already know and like me and I don't look like a monster!
I have a theory about why it seems scary to people. I think it has to do with ignorance and prejudice over disability. Too often non-disabled people see disabled people as needing help, needing protection, almost child-like. So someone being sexual with them feels almost like pedophilia. They don't realize what you and I know, that disabled men are consenting adults.
Anyway, some more recent experiences...
About five years after college someone I knew freshman year got in touch with me on Facebook. We got to talking and I told her that I was Internet dating. She asked why I would do that, since I am attractive, friendly, etc. She said she didn't think I needed it. I told her that I was looking for a particular thing that wasn't easy to find in real life. She wanted to know what it was, so I told her. She, as it turned out, worked with disabled kids and it really freaked her out. She told me she wasn't comfortable with that and we didn't speak again. That reaction is very, very rare.
A friend I grew up with is partly blind and her mother is more blind and they have been involved in disability rights stuff. I chatted with her about it sometimes. Finally one day I told her the reason I was interested. She didn't react badly, but she was cautious. She warned me to be careful of issues of power in the relationship, issues that she saw happening between her mother and father.
I have a cousin who is very open about sexuality. She is bisexual and totally comfortable talking about it. At some point I told her and she has been the funnest with it. She teases me and she tells me about any movies she hears about that have disabled characters. When I had a pattern of dating mean guys, “bad boys,” she told me she was going to find a nice guy for me and beat him with a baseball bat until he was paralyzed.
A month or so ago I was having dinner with some grad school friends. One of them was talking about a date she went on through match.com. When the guy showed up, it turned out that he was disabled and he hadn't told her. She was very uncomfortable with the situation. I said something like, “If only people would be honest about that on dating sites, then I could find them.”
“What?”
“Well, I actually like that. I'm attracted to disabled men.”
The other friend said, “My mom always told me there's a lid for every pot.”
They both expressed happiness that there were people in the world like me because they felt sad about people with disabilities having trouble dating.
I wanted to ask for her guy's number, but it seemed strange for her to pass him off to me, besides he lived a bit far away and was looking for a Jewish girl. It also sounded like he had not come to terms with being disabled and I didn't want to deal with that.
By far, most people have been glad to know that there is variety in human sexuality and it makes them think that there really is “someone for everyone.” (I don't think I believe that statement, but that's another issue).
I bring it up if friends talk about setting me up on a date, or I might say that I'm going to see a movie because of a sexy character who is disabled.
My parents and I have talked about it again since because, contrary to what I said in my email to them about not acting on it, I started dating disabled men after grad school. Here are some of the things my mom said about it:
“What if the men found out? Think how hurt they would be.” (I have always been completely upfront about it when dating and it is on my profile on disabled dating sites).
“I think you need to go to a therapist, we can fix this.”
“Maybe you will get it out of your system.”
“It would be one thing if you fell in love with a man who happened to be disabled, but this looking for it is very upsetting.”
“You need to stop this now.”
To start with, I spent my childhood assuming that I was the only one and I believed that I was being punished for some sin in a past life. As a teenager I would go to the local library and look for books about disability, but I didn't dare check them out, so I read them there, hidden in the stacks. One day I found a newsletter with information for people with disabilities in the area. I took one and I kept going back and picking it up when it came out. Eventually I thought, I'm really benefiting from this newsletter, I should give back in some way.
I looked up the address on the back and had my dad drive me over. It was being produced out of the barn on someone's property. Her name was Nancy and she was probably in her late 60s. She had a deaf daughter and a son with muscular dystrophy. I told her that I wanted to help out. So I started volunteering after school.
I learned a ton from her. That was my introduction to disability politics. She also had a subscription to New Mobility magazine and I read it when there weren't other things for me to do. In one issue I read, there was an article about devoteeism.
That was my first discovery that there was a word for it, that it was a known thing. I was 17 years old. I started formulating the plot for (W)hole at that point. It was extremely different back then. It was much more negative as well as complicated, there were four different character plotlines and Elizabeth ends up committing murder. But anyway, that's not the point of this post.
I went off to college still without having told anyone. My freshman year I met a man that I really liked and we clicked well. We never dated, he was an evangelical Christian and I was not, but we formed a wonderful friendship. He made me feel comfortable and safe and okay to be myself.
One day I decided to tell him about this. I remember we went for a walk, we were next to a big gray rock when I said I thought that God was punishing me. I don't remember exactly what he said, but he still accepted me and still loved me and that was a tremendous relief. We both thought it would be best for me not to act on these feelings, looking at it the same way that evangelical Christianity tends to look at homosexuality.
I felt like a huge weight was lifted, I felt euphoric from breaking the secrecy. It wasn't just in my head eating away at me anymore. I decided that secrecy was a bad thing and I've never been able to keep a secret since.
I wrote an email to my parents telling them that I knew they were aware that I had always been interested in disability and I told them that the truth was that it was sexual. I also sent an email to Nancy. Nancy and I had been keeping in touch a little bit since I left for college. I had gone back and visited and she had continued to mentor me, but after that email I never heard from her again. My parents didn't really respond and we didn't talk about it at that time.
I can't remember when I told my best college friend, Ilana. She and I were always talking about boys and relationships and sex, though. We thought very alike and I always felt very comfortable saying absolutely anything that came into my head to her.
The summer after freshman year, back home with my two best friends, I knew I wanted to share it with them too. No secrecy between us. We got together at one's house and I stuttered and shook and cried while I told them that there was a reason why I was interested in disability, that I was attracted to it. They both thought it wasn't so bad, in fact it just made them finally understand why I liked the movies I liked, etc. They said, “It makes so much sense now.” They shared their own relationship adventures from college. None of us had ever dated before and we never talked about boys or crushes. They both had boyfriends freshman year and I did not.
Over the years, the book has been a great opening for talking about it. In a way that's a bad thing, because I don't have a choice. I want to market and sell my book, but when I tell people I've written a book they want to know what it's about. “Well, it's about a girl who is attracted to disability,” I say. “Seriously?” They say, “Is that a real thing?” And then I have a choice.
Sometimes I tell them that it is a real thing that I read about in a magazine and decided to write about and sometimes I tell them that it is something I have. When I tell people the first thing, the reaction is always one of uncomfortableness and disgust. But when I tell people the second I hear much more positive things. Because they already know and like me and I don't look like a monster!
I have a theory about why it seems scary to people. I think it has to do with ignorance and prejudice over disability. Too often non-disabled people see disabled people as needing help, needing protection, almost child-like. So someone being sexual with them feels almost like pedophilia. They don't realize what you and I know, that disabled men are consenting adults.
Anyway, some more recent experiences...
About five years after college someone I knew freshman year got in touch with me on Facebook. We got to talking and I told her that I was Internet dating. She asked why I would do that, since I am attractive, friendly, etc. She said she didn't think I needed it. I told her that I was looking for a particular thing that wasn't easy to find in real life. She wanted to know what it was, so I told her. She, as it turned out, worked with disabled kids and it really freaked her out. She told me she wasn't comfortable with that and we didn't speak again. That reaction is very, very rare.
A friend I grew up with is partly blind and her mother is more blind and they have been involved in disability rights stuff. I chatted with her about it sometimes. Finally one day I told her the reason I was interested. She didn't react badly, but she was cautious. She warned me to be careful of issues of power in the relationship, issues that she saw happening between her mother and father.
I have a cousin who is very open about sexuality. She is bisexual and totally comfortable talking about it. At some point I told her and she has been the funnest with it. She teases me and she tells me about any movies she hears about that have disabled characters. When I had a pattern of dating mean guys, “bad boys,” she told me she was going to find a nice guy for me and beat him with a baseball bat until he was paralyzed.
A month or so ago I was having dinner with some grad school friends. One of them was talking about a date she went on through match.com. When the guy showed up, it turned out that he was disabled and he hadn't told her. She was very uncomfortable with the situation. I said something like, “If only people would be honest about that on dating sites, then I could find them.”
“What?”
“Well, I actually like that. I'm attracted to disabled men.”
The other friend said, “My mom always told me there's a lid for every pot.”
They both expressed happiness that there were people in the world like me because they felt sad about people with disabilities having trouble dating.
I wanted to ask for her guy's number, but it seemed strange for her to pass him off to me, besides he lived a bit far away and was looking for a Jewish girl. It also sounded like he had not come to terms with being disabled and I didn't want to deal with that.
By far, most people have been glad to know that there is variety in human sexuality and it makes them think that there really is “someone for everyone.” (I don't think I believe that statement, but that's another issue).
I bring it up if friends talk about setting me up on a date, or I might say that I'm going to see a movie because of a sexy character who is disabled.
My parents and I have talked about it again since because, contrary to what I said in my email to them about not acting on it, I started dating disabled men after grad school. Here are some of the things my mom said about it:
“What if the men found out? Think how hurt they would be.” (I have always been completely upfront about it when dating and it is on my profile on disabled dating sites).
“I think you need to go to a therapist, we can fix this.”
“Maybe you will get it out of your system.”
“It would be one thing if you fell in love with a man who happened to be disabled, but this looking for it is very upsetting.”
“You need to stop this now.”
