Hey y’all. I’m bint alshamsa from over at My Private Casbah and I’m really excited to be guest-blogging at Feministe this week. I just realized that i forgot to introduce myself before I posted my first entry. Sorry about that! Well, let’s just jump right into this, shall we? I have a dirty little secret: I’m disabled and I really love sex, especially with other people who have disabilities. Not only do I love sex, I’m even capable of having sex.
The frenzy surrounding John Edwards extra-marital affair has provided the media with a perfect chance to explore the complexities of sexual relationships involving people with disabilities. As usual, this opportunity looks like it is going to be completely squandered, so I figured maybe I could do something to change that. Besides, I just really like talking about sex whenever I get the chance to.
My first college sweetheart and I were together for three years before breaking up. I was physically disabled but undiagnosed when we first started dating. We had the nice sort of (vanilla) sex life that I think was fairly typical for two non-disabled people beginning their adult lives. However, once I was diagnosed with Systemic Lupus, the whole relationship went south. Well, actually, it went west because he decided that he just wasn’t cut out to be anyone’s caretaker yet, so he left New Orleans and moved back to his hometown in California for a while.
I’m fortunate. That was the first and last time I was dumped because of my disability. The next relationship I entered into was with my best friend (The German) and we’ve now been involved with each other for ten years. I came into this relationship as a self-identified PWD (person with disabilities). I’d like to say that he knew what he was getting himself into but how things start are rarely how they end up.
A few years after we got involved with each other, I was diagnosed as having a rare bone cancer in my chest. Then, three years ago, he was attacked by a German Shepard and knocked unconscious when his head slammed into the side of a truck. This left him with damage to his spine and brain. At that time, I was still going through treatment for my cancer and in need of a lot of caretaker assistance. Suddenly, instead of one PWD being cared for by a non-disabled partner, we were two people with disabilities trying to take care of each other. It was a rough transition.
If you saw how difficult our lives became, you might have concluded that we wouldn’t have the time or energy to even think about sex, but that wasn’t the case. In fact, we started having even more sex. Yeah, that’s right. I said it. Our sex life got even better than it was before.
Having cancer is extremely stressful and physically traumatizing. After the rigors of rounds of treatment, sex helped me reaffirm my sense of ownership over my body. Though the radiation and surgeries brought me to the very edges of what the human body could withstand, none of it made me want to stop having sex. Picture spending months (and then years) of your life, being pressed and twisted and turned, under, behind and between machines. Now try to imagine how you’d gather up the strength to keep going even though you’ve already been told that, no matter what you are willing to endure, none of it is going to cure your body. Being able come home and have that same body kissed, caressed, and worshipped kept me going.
My doctors warned us that there wasn’t any reason to believe that I was going to live much longer. Surprisingly, this also improved our sex life. Hey, if you’re going to die soon, screw visiting the Eiffel Tower! Instead, why not enjoy as many orgasms as you can during the interim?
Also, the knowledge that your time to enjoy experiences is quite limited can be powerful motivation to try out all of those things you’ve considered trying but never got around to doing in bed…or other locations. We stopped waiting for perfect opportunities to come along and started making the most of each moment, regardless of back-aches, soreness, sleepiness, or less than ideal locations.
Oh, I know this must all seem like too much information to some but there’s a reason behind it. I’m really fed up with people assuming that people with disabilities aren’t sexual beings, capable of having fulfilling physical relationships with others. Furthermore, a lot of us are having great sex lives with each other. In other words, don’t assume that we are all desperate to find some non-disabled person willing to get us off. Some of us actually prefer to share our bodies with those who can understand what it means to live in a society as a person who is seen as non-sexual, abnormal, and only worthy of pity, simply because our bodies don’t match up with society’s ablist norms.
Just so you know, I’m not the only PWD who sees disability as a catalyst for all sorts of sexual possibilities. In case you’ve never heard of it, check out this video on Sins Invalid:
Mmmm, sex! I have given into the temptation to mention that Marfan’s makes people very bendy. *leer*
I make a point of reminding people in my life that my husband is a very sexual person and that I enjoy sex with him (and he’s hot, omg, have I mentioned how hot he is?). It completely horrifies some people that I talk that way, though, because he’s obviously a wee innocent who has been corrupted by the evil of my awful sexuality being polluted all over him. *sigh*
There’s a book out called Sex & Disability that he’s reading right now (I get it next). He tells me it’s good.
I’m not sure if you can view it online, but you should totally check out the short film Want by Loree Erickson. I saw it at the 2008 Feminist Porn Awards. She made it as a video on activism for a class project. (Quote: “Everyone else was doing videos on recycling!”) It’s a short film about her sexual life (with quite explicit scenes) and desire to be seen as sexual, and she is disabled and queer.
Another review of Want
Bint, I’m glad you didn’t wait for the mainstream media to explore complexities! You do it much better.
That’s an interesting point about limitations instead being catalysts to break down boundaries.
Great post, and you make a lot of excellent points. One thing that a lot of able-bodied people also tend to assume about the sex lives of the disabled is that our kinds of sex isn’t or aren’t really “sex” because it isn’t strictly all-PiV sex-all-the-time or whatever. (For the record, and without being too explicit: I have fibromyalgia, and I have, er, certain energy limitations when it comes to the “right” or acceptable kinds of sex.) I think this also plays quite a bit into heteronormativity, as it does not acknowledge queer people with disabilities and their sex lives.
Good to see you blogging here, BA!
I just watched a very good Australian documentary called “Naked on the Inside” which aims to fill a void in the narrative on The Body and self-image. One portrait was of this guy Dave Toole, a professional dancer with DV8, who is really candid about his disability. His legs were amputated when he was a toddler, and he mostly gets around by walking on his hands. But I was mostly struck by how charming and good-looking this guy was, and was really blown away by his choreography. It is powerful and sexual and so, so graceful. Anyway, I know it’s sort of off-topic, but I wanted to share it because it just drips with sex.
Also, just wanted to say that I haven’t been able to see the whole movie that this piece is cut from, but I’m kind of discouraged by the story that frames the piece.
Outsider looking in, rejected by the able-bodied dancer. I’d like to see it in context, but anyway, I could watch this guy all day.
Thanks for writing this! As someone who has a disability, I get frustrated by society’s inability to view disabled people as sexual beings. It’s like we’re unfuckable because all our body parts aren’t there or functional. And if disabled people are actually having sex, and gasp! put it on film, many people treat it like it’s some kind of freak show. “Ewww,” they say, even as they can’t stop staring.
Because, you know, only the able-bodied should be allowed to get it on.
I would argue that the disgust reaction to sex with a disabled person is an evolved behavior. But I don’t think that is a reason to discriminate or to disallow people the freedom to do as they will with their lives.
What an excellent post. thanks.
One thing I’ve wondered about, given that I tend to think of everyone as a human being, while still noticing what makes them particular, is noticing my own attraction to particular people with disabilities. Like everyone, for me it is a case by case basis. Anyway, what I’ve wondered about is the fetishization of pwd by an able-bodied person. Sometimes I notice myself taking extra care to guage my attraction to someone with disabilities, I think partly in order to counter-act the stigma. I also think that it would be fun, not having had that much sexual experiences with pwd. But what I wonder is where the line between that and fetishization occurs. I feel like I know the difference, but articulating it not something I’ve explored. Then, of course, it leads me to start thinking about fetishization in general when one is a person who takes care to notice those things that make us all different. Might it be the case that all attraction is a certain kind of fetishization? Anyway, bint, your post made me think, and ponder. I was wondering what others thought of this…
Amazing! This is one of the best posts ever.
That’s some hot video! Thanks so much for posting it.
Your post is great too, just got momentarily umm… distracted! ;)
I find disability freeing in the sexual realm. You really have to tear up the script and throw it in the fire. There is little conventional about it. It’s emerging from a metal crate into a beautiful spacious field. There’s so much to explore, so much more to do and enjoy about yourself and about each other.
Sex is an ultimate art form. It’s reveling in the beauty of the physical body. And that is why it’s so amazing for pwd. Our bodies are maligned, adversary, enemy according to mainstream culture. But with sex we can escape from that paradigm for an hour or two, and focus on everything that makes our bodies feel good to us. It’s a space we are rarely afforded anywhere else.
Having a disability has forced me, and us, to explore the different ways we can make each other feel good that don’t turn up in a Cosmo magazine. It’s wonderful, and it makes me feel so much more connected to him: I know he is taking the time to read my body and find new ways to make it happy, rather than just reading from that Cosmo/Maxim one-size-fits-all script. He is learning and enjoying me, in its purest form, no outside influence allowed. And that makes it so much more special.
I’m with JetGirl. I’m not particularly relationship worthy despite the fact I somewhat regularly catch women with that distant-eyed, nearly drooling countenance. I don’t particularly know *what* it is, so I guess it’s a mixture of “brokeness”, my own personality, the fact that I do not get out much and don’t have a car or much money, etc, etc, etc.
Look guys, I’m seriously beginning to think ablist or pwd are terrible terms. There are so many ways for a person to be broken and so many ways for circumstances to be different relative to the nature of brokeness. Hence terms like these are far too general and far too smearing of internal differences. I believe that it’s a better idea to subdivide disabilities (despite that many people have more than one or one kind). Physical Ablism, Sensorial Ablism, Mental Ablism, so forth and so on… Using less clunky terms, of course. This change would lead to discussions between mostly abled and non-mostly abled people such that those discussions are more productive.
I’m with Dharmaserf. I’m able-bodied, but I do find some people with disabilities attractive. And everytime I’m worried that I’m fetishizing them or that others might see it that way, including the pwd. Even though I’m not attracted to all pwd’s or even with the specific disability, so logically I know I’m not, but still….Also the fact that I refuse to be attracted to parts of people, but to the person as a whole, including the disability. Which makes me feel weird because If i’m attracted to the disability of this specific person and not ignoring it, do they think I’m paying undo attention to it, even if i’m equally attracted to all the rest? Am I crazy?
You know…maybe we oughta take some tips from Miles Vorkosigan!
?:~)
I actually found the dancer video really bothersome, I think because it started with the looking in the window–it evoked kind of peeping tom associations for me, and the whole thing felt to me like it wasn’t so much the woman rejecting the man for an able-bodied man, but more like she was being hit on in a kind of aggressive and overly intimate way, and felt uncomfortable with it so she went to talk to someone she already knew. And the friend who stayed at the window maintained that sense of predatory behavior–I felt like it should be set in a bar, not a dance studio. It would have bothered me equally if the guy who looked in the window and then came to dance with (at?) her was able-bodied.
Of course, it’s also I have baggage about being hit on.
I don’t think that was what the piece was trying to convey at all, but I couldn’t shake that feeling. I would be interested to see what other work Dave Toole has done.
This is a wee bit late, but I’m behind on blogreading and I really just wanted to say that this post was really cute. I mean, it was also very intelligent and well-written. But, what can I say, I’m sort of a hopeless romantic, and talk of couples getting frisky in times of stress pushes my “cuuuute” button.
It also made me think of this Modern Love column, about the writer’s (great) sex life with her terminally ill (deceased by the time she wrote the article) boyfriend. (to anyone whose interest is piqued: definite tissue-warning applies, but I highly recommend it anyway, or maybe partly because of that).
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