Shortly after I acquired my disability, my brother suggested I buy a computer so I could go online since my mobility was limited. I still remember setting up AOL, including the IM feature. I composed a profile in which I mentioned that I was female, what my hobbies were and that I used a wheelchair.
My IM's started going off within 20 minutes. I had, within the space of several hours, six men IM me asking me questions - not about me, but about my disability. By the time the sixth one did it, I wondered what was up so I asked him. He replied that he was a devotee - attracted to women in wheelchairs with disabilities.
"If you don't want IM's from people like me, you better take the wheelchair out of your profile," he told me.
I did delete the word wheelchair out, feeling kind of queasy and yucky at the same time. Attracted to me simply because I used a wheelchair? What was that about? So, one of my first searches of the web was of devotees.
Not all, but several of the devotees were unpleasantly persistent even in the face of me asking them to leave me alone once I caught on. One night I was online with a good friend and she said she was being IM'd by this really nice guy in Cleveland and I checked her profile. Sure enough, it said wheelchair user, female. I mentioned his cybername and she asked "How do you know?" I told her. Like me, she wasn't particularly interested either.
I found it just as unsettling to be chosen because I have a disability and use a wheelchair (or whatever the particular devotee attraction is, since it varies) as it was in everyday life to be eliminated from the running because of my disability. Both situations make me feel as if I'm not being treated like a person.
At that time, I began dating offline as I regained my mobility and went through the usual "blind dates" (although I insisted the guy know I was disabled - I'm just not sure any of them understood what a 'quad' is until they watched me try to eat) and dating scene. I never went through a dating service although one of my friends met her husband there. I dated through groups I belonged to with common interests, dated business acquaintances and friends of friends.
And, yes, I found someone. We had a wonderful first date and when he dropped me off at home, he asked to come inside. I watched as he lifted his pant leg and showed me a prosthetic leg. "Still interested?" he asked.
Over time we were engaged. We worked through what became our mutual fears about the relationshp working, fears that were being fed by some friends and family. He lost his leg at 19 years old and his mom still treated him, her only child, as if he was about that age at times. And many thought marrying a quad was too much for him to "take on". He was an extremely active person, so this didn't seem to make much sense to either of us after we calmed each other down. Perhaps the most amusing part of this was that his conservative mom , a Southern debutante in her day, kept inviting me to tea parties where I couldn't even hold a tea cup! You should have seen the look on her face when he marched into the "tea room" and plunked a straw into the tea cup one day and said "Let it go, Mom."
Logistical issues like how to be intimate when a disability requires adaptations was much easier for us than working out day to day living on more mundane subjects, such as him letting the aide do his/her job and knowing that didn't make me feel unloved. Many times people assumed he had no disability because they couldn't see his prosthetic leg. This created some very interesting scenarios for us behind closed doors, believe me. But we weathered it and both learned from it.
Perhaps because of the groundwork we laid, when he passed away unexpectedly I can truly say we were totally devoted to each other. It was a hard blow. Love songs still bring tears to my eyes, movies we saw together bring a lump to my throat. But I look at it this way: I went from six anonymous devotees to one totally devoted amputee who loved me.
11 comments:
That is a really beautiful personal story. Thank you so much for sharing it. It’s also a great example of the moral queasiness of appreciating someone just because of a disability (or any single characteristic) like your devotees did. People are of course so much more complex than that.
As an able bodied person, I have been thinking about this issue recently. I meet people with disabilities at work or through friends, and I am interested in them because they have a unique perspective on the world, one that I'm curious about. But I feel like it’s incorrect to befriend someone on these grounds, just like you got a bad taste in your mouth from the devotees. So I don’t aggressively pursue the relationship, because it feels funny. But as a result, I’m not friends with anyone with a disability!
My dilemma: I like to be friends with people who are interesting and fun. Sometimes a potential friend who meets these criteria also happens to be disabled. I’d like to get beyond their disability to learn about their personalities. But how do I address the moral queasiness you mentioned in your example?
I guess the ideal would be for me to not be interested/ curious in their disability at all and to see them as just a person like everyone else. But that is unrealistic since there is a real, difference between me and them. At issue is how much meaning I attribute to this difference. I wish this difference meant little to me but to be honest, it’s significant enough to make me write a couple paragraphs. I’d appreciate any insights you have into this issue.
Great post, Ruth. I agree that working out the day to day things are harder in a relationship than what you might think are bigger issues having to do with disability.
My sincere condolences on your loss.
frogger - In your comment you write "Sometimes a potential friend who meets these criteria also happens to be disabled. I’d like to get beyond their disability to learn about their personalities."
Making friends with disabled people is just like with everyone else. Concentrate on getting to know the person and if you do that you won't have time to be so worried about your own stuff. If the person wants to be friends with you too then all will work out.
Ruth-- this blew me away. Great post.
Awesome post Ruth! In my Sexability discussion groups that I'm putting together across the country, I plan to address and at least define devoteeism. I'm surprised by so many people with disabilities aren't even aware that people may approach them with this motive. I try to introduce it in a nonjudgemental way, but I had a very similiar experience with my first time online unsupervised. I was around 14! It's scary for me to think of even younger kids with disabilities who aren't at least aware.
There was also an interesting research study on devotees published in Disability and Sexuality. It questioned whether we (people with disabilities) reacted SO negatively to devotees because we were uncomfortable with our own bodies and the parts that "looked disabled" which are what devotees tend to be most attracted to. The researchers did NOT find support for this hypothesis. Instead, they found that it was the manner and social skills (or the lack of) that seemed to be the real reason why many of us are so turned OFF by the approach of devotees. The blunt ones creep me out, but I'm almost even more bothered by the secretive ones because would I ever know?? Thank goodness I'm not on the dating scene anymore! We have so much to think about!
Beautiful love story. Thanks for sharing.
Janet
Some devotees are very pushy. I've felt stalked online at times just for putting on my profile that I''m disabled. This is a problem since I like to meet other disabled people so if I take that information off , it makes it more difficult. As a result I resent devotees.
I'd never even heard of this. Devotees?? My first reaction was 'Ehh!! Creepy weirdos!'
But I wonder...we're all attracted to certain types. 'Tall, dark and handsome', etc.
Can 'disabled' legitimately fit the category of attributes a person sincerely feels drawn to?
Stalker-type behaviour, of course, is plain wrong, in any circumstance. So is liking someone based solely on a perceived feature.
I guess in the end, people want to be liked and loved for who they are, and now what they look like or how able-bodied they are.
Thanks for sharing this, Ruth. Leaves some food for thought.
Ruth, thank you for your post. It brought tears to my eyes reading it... my condolences.
I'm also in a marriage where strangers assume that my husband is able, because his disability, while serious, is mental. It gives us funny times as well.
Frogger,
You're overthinking it. Get to know the person. If you have questions about the disability, ask matter-of-factly, the way you'd ask about someone's previous career or their college or their hometown. Also ask about their previous career or their college or their hometown. You'll find as you get to know them that your fascination with their uniqueness will fade and you'll feel less creepy about it.
I know this is an older blog but I just came across it. Ruth your story brought tears to my eyes. Not many people find that kind of Love and even though he was taken away to soon, you are so lucky to have had that for the time you did.
I just started dating a quad I met online. I was instantely attracted to his words and picture and when I read at the very end that he was in a chair, it didn't even phase me. Once I met him, I couldn't even tell you what his chair looked like. I was lost in his beautiful blue eyes and compassionate words. His chair wasn't an issue then and it's not now. Yes their are things that had to be given up but I can honestly say, it's is so worth it!
Thanks.I wish both of you the best.
Post a Comment