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The Lisa Files: Sex and Disability

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The Lisa Files: Disabilities            



blindness |
multiple sclerosis |
schizophrenia |
quadriplegia             

BLINDNESS

On Little House on the Prairie, the actress who played Laura’s sister Mary, Melissa Sue Anderson, actually threatened to quit when told her character would be going blind. Apparently she didn’t want to have to stare blankly ahead all the time and thought there would be nothing fun written for her part anymore.

    

Krysta is a friend of a friend of a friend’s. Halfway through the
interview, I got bored with my blindness questions and wished she didn’t
live three thousand miles away. I think we could do anything together — chase boys, holler at protest rallies. I bet she could play pool and have a good time with it, relying on her sense of humor and the sound of the balls clicking.

    

And I bet that nasty, old, sighted Melissa Sue Anderson sucks at pool.

Lisa: Do you have a physical type?

Krysta: I used to. I’ve become less picky. I like a medium build. Hair and eye color don’t matter, obviously.

Lisa: Have you ever had a trophy boyfriend, someone you knew was good-looking even though you couldn’t see him, and paraded about with him?

Krysta: Yes! [laughs] There’s all kinds of information that gets projected about someone. A lot of time you can tell someone’s really good-looking by how people treat them — like saying “Can I help you?” in an eager sort of way. I went on a date with this guy I knew was pretty attractive by his personal ad. At dinner I found out he wasn’t lying — the waiter started hitting on him!

Lisa: Are you good-looking?

Krysta: I have gotten enough random cues so I know I can be attractive.

Lisa: What do you look like?

Krysta: I’m 5’8″ with brown hair. It’s also been black, red and purple though.

Lisa: How do you decide what color to dye it?

Krysta: Friends make suggestions, or tell me what would go with my skin tone.

Lisa: How do you match colors for clothes?

Krysta: I don’t have my clothes labeled like some blind people do — I just remember by the texture which piece of clothing it is and what color.

Lisa: Were you born blind?

Krysta: No. It happened when I was three. I had a disease of the retina.

Lisa: What sort of school did you go to?

Krysta: I was in a special education school for three years, and then I was mainstreamed.

Lisa: How were you treated by the other kids?

Krysta: Like I did not exist.

Lisa: What did it feel like?

Krysta: It felt like it feels when you’re the only one of your kind in your school.

Lisa: How old are you now?

Krysta: Thirty-three.

Lisa: How has your blindness affected your ability to meet guys?

Krysta: There are some drawbacks during the initial flirtation stage, like not being able to make eye contact. But it is possible to get around that. I did this test in college where I’d walk into a bar. If my white cane was apparent, men would offer me help. If it wasn’t, they’d offer me a drink.

Lisa: Did you think men ever use the offer of help as an “in”?

Krysta: Yes, but since I’m a very independent person, I didn’t figure out for the longest time that people might think offering to help me would be a way to meet me.

Lisa: Do you think anyone is ever drawn to you because you’re blind?

Krysta: Yeah. People who think it has this weird mystique — blindness as symbolism for being able to see, that somehow I’m more perceptive of the truth. Some guys also have a savior/protector ideology.

Lisa: That sounds obnoxious.

Krysta: It is. I tell them, “You’re wasting my time, you patronizing pain in the ass.” Or when people are so impressed: “It’s so cool how you do stuff.” Right, I’m getting on with my life. Wow. They think going out with me automatically means they’ll have to be reading my mail and feeding me and who knows what. They have moments of cognitive dissonance when they find out I have body piercings and a tattoo. I don’t have handcuffs in my bedroom, but I’ve thought about it. I don’t get freaked out easily, and that goes against the perception of blindness being asexual, helpless, conservative, quiet, timid and not terribly adventurous. I tend to be fairly liberal and well aware of what’s going on in the world.

Lisa: Yeah, I think blind people are expected to be anachronisms — sit in a room with wallpaper from the twenties and wear a shawl.

Krysta: A lot of blind people are anachronistic — listening to old-time radio plays or such. But I think a lot of that comes from lack of employment opportunities and financial disparities. They don’t have access to resources and information that other people have. When I had a low-paying job, I didn’t go to the movies — not because I’m blind, but because I didn’t have money for the ticket.

Lisa: You go to the movies?

Krysta: Yeah, I can tell what’s going on from the dialogue — I listen for the subtext. If there’s an action scene, my friend can whisper to me what’s happening.

Lisa: In your sex fantasies, can you see?

Krysta: No.

Lisa: What’s that like, to fantasize without seeing?

Krysta: What’s that like? I never know how to answer that kind of question.

Lisa: Yeah, I guess that would be like someone asking me what it’s like to see — you just see.

Krysta: Well, there’s smell and taste and sound, all sort of sensation. Not just the intentional sounds people make, but also the sound of how you know where someone is. I have had fantasies of another person being dependent on me, or at least not in control, especially with a sighted partner. Where there’s a role reversal, like they can’t see, or are tied down.

Lisa: You know how in movies they make it really sexy when a blind person feels someone’s face to see what they look like? What’s it like in real life for you?

Krysta: I’ve never done that. Well, the way they do it in movies, it’s always a lead-up to something. If I touch someone’s face, we’re in bed and I touch it just like everyone else does.

Lisa: Have you ever had a one-night stand?

Krysta: Several. My first sexual experience was a one-night stand. I was twenty and was in that late teens/early twenties angst of “Oh my god, I’m going to die a virgin.” I was out of the country at this provincial school and extremely bored. This Danish guy was visiting; he was playing pool and he’d been drinking some. He noticed my cane had a golf grip and was playing with it when it snapped open. He thought he had broken it, and I had to reassure him, and that got us talking. We went back to a friend’s dorm room where we talked, drank, laughed. At last I realized he was interested in me. He took my hand and there was that electric shock. So when it came time to break up the little party and we were figuring out where everyone would sleep, he ended up in my room. It was a very good experience. The next day my friends said, “He was really cute!” I said, “Oh, good!”

Lisa: How do a guy’s friends and family tend to react to them being with you?

Krysta: I’ve never met a boyfriend’s parents, it’s never reached that point. But sometimes there’s issues with not knowing how to introduce me to their friends. Some people react like: “What are you doing with this disabled woman, this blind woman?” There have been people who kept me as a separate little part of their life — that gets old real fast — and then there are others who just handle it. Ooh, I have to go — the UPS guy is here.

Lisa: I can tell you: all UPS guys are cute. I think maybe that’s their marketing strategy. “How can we stand out from the other delivery services? Hire all handsome men.”

Krysta: He seems nice, too. He comes to deliver things all the time.



blindness |
multiple sclerosis |
schizophrenia |
quadriplegia             

           

  

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MULTIPLE SCLEROSIS

Babies not touched enough tend to get sick. Sick adults not touched enough take longer to recover. Old people not having sex die sooner. It’s not healthy for people with a disease to never enjoy a gentle roll in the hay, nor is it fair. Yet the worse your disease is, the less likely you are to be picked for love. Multiple sclerosis is a bad one: a chronic, degenerative disease that attacks the central nervous system and often leads to paralysis.

    

There are ways to enhance sexual abilities when your body is misbehaving — psychologically (broadening your definition of what constitutes hot sex), mechanically (aids like “The Love Stool” enable the physically weak to get on top of their spouse and have at it without getting exhausted) and chemically (Viagra, or injections into the penis, resulting in four-to-twelve hours of rock-hard love gun!). Viagra is what Ronald, a thirty-three-year-old sufferer of MS, discovered on his recent trip to the Red Light district of Amsterdam.

Ronald: I have what is unofficially referred to as “invisible MS”, meaning that my symptoms aren’t apparent by looking at me — though I sure as hell notice them! I can walk and do everything else without assistance, so technically I’m not “handicapped.” I should follow that with a “yet” since the disease is progressive and though I have the relapsing form of the illness, the relapses are getting more frequent and more bothersome. When the weather is hot, I’ll notice that my legs are weaker than usual or I’ll get vertigo, in addition to my usual lower-body tingling and pain.

Lisa: How did you figure out you had MS?

Ronald: The first symptom I had was a numb hand, which I believe lasted for about a week. Later, I started feeling a strange, unpleasant sensation of electricity going up and down my leg and arm.

Lisa: Did the diagnosis have any immediate effect on you as a sexual person?

Ronald: I dated my first girlfriend, this Deadhead girl, when I was twenty-three. At the beginning of our relationship, I explained to her that my main symptoms were lower body weakness and pain, and she became worried about how that would affect my ability to have sex. Well, the first time we did it answered that question. Though I didn’t have trouble getting it up, I had trouble keeping it up. I also had trouble with the thrusting motions of fucking. She dumped me not too long afterward. Four years later, I met my second girlfriend, an East Indian from Fiji. She was a virgin, and seven years younger than me. We really fell for each other. The problem was, I couldn’t really have sex with her either. In retrospect, I feel like an idiot for not experimenting more and trying different positions.

    

Being sexual really helps my MS. When my symptoms are acting up, being physically close to a woman really does something for me. The focus is no longer 100 percent on myself. The pain isn’t so much “there” as it is when I’m alone.

Lisa: When you go on a date, do you tell them right away you have MS?

Ronald: The last woman I dated I met on the Internet and we talked on the phone a few times before meeting in person. I happened to mention at one point that I have MS; we were exchanging stories about our families and I mentioned that my father has been disabled with MS most of my life and that I have it too. She knew what MS was, and primarily wanted to know if I could walk without assistance, and I assured her that I could. It’s a moot point anyway because we only lasted for one face-to-face date. That was about five months ago.

Lisa: Do you fantasize about being more able-bodied, or even ridiculously able-bodied, like flinging girls around the bed and rippling your muscles at them?

Ronald: Yeah, I do fantasize about being bigger and more powerful — and about being able to “power fuck.” But a positive change in my sex life occurred during my trip to Amsterdam to see hookers in June.

Lisa: Why did you go all the way to Amsterdam? Why not local hookers?

Ronald: I never wanted to take the risk of being arrested in attempting to see one in California. I didn’t want to do the whole Nevada thing because of the insanely high prices.
Before I left for Amsterdam, I asked my doctor if I could try some Viagra. This is something that is frequently given to men with MS. Well, to put it mildly, it changed everything. I was able to get erect and keep it up — for the first time in my life I was really able to have sex. It was a revelation. I was able to explore and discover what positions I liked.

    

I would generally pay a prostitute around 350 guilders (about 170 dollars) to be with them for an hour. I discovered that the best position for me is doggy style, since I can balance myself and literally lean on them for support. Not all the prostitutes are into that, though; some will only do missionary position, which is too hard on my legs. But the best prostitutes really seemed to go out of their way to help me. I could barely stand up after it was over but I didn’t care. I was able to put the MS aside for awhile and somehow it made me feel more real. I ended up having more confidence in being able to truly satisfy someone some day. Viagra and those prostitutes just about saved my life.


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multiple sclerosis |
schizophrenia |
quadriplegia       

  

           

  

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SCHIZOPHRENIA

Rob, an intelligent person and a talented musician/poet, is a friend of mine with schizophrenia. Many of his other friends have cut him off over the years because he does crazy things and I suppose it does get pretty depressing when he calls from the hospital talking about how he tried to kill himself again. It used to be he could sort of get his life together and be independent for months at a time. Now he can’t seem to stay out for more than a few weeks or even days. I couldn’t call him for this interview, I just had to wait for him to call from one institution or another and then furiously scribble what he said in the few minutes before some official person would tell him his time was up. Here are a few of those conversations.

Rob: I have a girlfriend who wants to marry me. Her name is Shelly. She has MS.

Lisa: How severe is her disability?

Rob: Well, I was on the phone with her last night for twenty minutes and her mom was trying to get her pants off the whole time. If we get married, I’m going to have to help her with her clothes and going to the bathroom and everything. I’m willing to do it.

Lisa: Is she able to have sex?

Rob: I tried to have sex with her in the hospital, but we got caught.

Lisa: How far did you get?

Rob: I got a condom on my penis and that was it. That’s when the nurse walked in.

Lisa: Was she into it? Shelly, I mean.

Rob: Totally! She wants to have phone sex all the time. She’s an actress. She’s been on commercials. Whenever she doesn’t want to do something, she says, “I’m too famous to do that!” She’s half-Puerto Rican and half-black. She’s beautiful! But her mom doesn’t want us together. The nurse that caught us told her I’m a heroin addict and I’m homeless. Plus I’m not the most handsome guy in the world.

Lisa: Are you a heroin addict?

Rob: I’ve been clean since I went to the hospital a month ago.

Lisa: Are you homeless?

Rob: Well, yeah.

* * *

Two days later, from jail.

Rob: I broke up with Shelly because I could never see her. The last time I called, her mother said, “Do I have to get a restraining order on you?” I told Shelly I was gonna be sad and she said she would be sad and we said good-bye. After I hung up, I drank some alcohol. I was frustrated so I cut my arm up. Back at the homeless shelter, I didn’t want butterbeans. I wanted everything but the butterbeans, and I told the cook. She started putting all these butterbeans on my plate so I started screaming at her and they called the cops and they took me here.

* * *

Two days later, from the hospital.

Rob: I got caught masturbating by a good-looking nurse this morning.

Lisa: What did she do?

Rob: Just said, “Oh!” and left. It’s not against the law or anything.

Lisa: Are you on medications now?

Rob: Ativan, Seroquel and Tegretol. And Nicorette gum. I’ve got some Prolixin in me too.

Lisa: So I guess those drugs don’t affect your sex drive adversely, since you were just caught masturbating.

Rob: No, these ones don’t. Before, I was on Anafranil. And I told them this time I don’t want to be on that, because part of the reason I tried to kill myself was because I couldn’t get a hard-on on Anafranil. So they put me on Seroquel, and Seroquel keeps me going all day long. I was beating off all morning and pretty much all day till I finally came like an hour ago.

Lisa: Have you ever had sex in a hospital?

Rob: Yeah — at this state hospital in Texas. We got let outside to go to the gym and me and this Spanish woman just did it in the dirt. She was homeless, too. I had been telling her that I wanted to perform oral sex on her and she seemed intrigued, so that’s what we did. Then we had sex and I pulled out and came all over her stomach.

Lisa: Do you think because you’ve spent a lot of time in hospitals and shelters you’ve had sex with wilder people than you’d be drawn to normally?

Rob: Yeah — guys and girls that I probably wouldn’t ever come in contact with if I didn’t have this illness. But then when I’m out and have housing, I’ll look at a girl — a regular girl — and think, “You’re too good for me.”

Lisa: When did you start feeling sick?

Rob: Well, when I was eighteen I was in a car accident and I had a head injury — my left frontal lobe was bruised. But I was crazy before. I always had a therapist when I was in high school. At first because I was picking on my brother and sister and hitting them, and then because I was just emotionally distraught. I would stare at this girl in class and want to talk to her, but instead I would write her a note that said, “I’m worthless. I’m not worth you.” After the accident, I started hearing voices. My first diagnosis was bipolar, when I was twenty. Now I’m diagnosed with schizoaffective disorder, which is a mild sort of schizophrenia.

Lisa: How old are you now?

Rob: Twenty-nine.

Lisa: What does it feel like to be schizophrenic?

Rob: It feels like I’m on a trip but without the hallucinations.

Lisa: Is it ripply?

Rob: No, I act goofy a lot. I like to sing little songs when I’m alone. And I say things like, “I should have remembered that for,” and the “for” has nothing to do with anything at all.

Lisa: Sounds confusing.

Rob: It is confusing. It’s chaos. Recently I’ve tried to pay more attention to my mind, to make sure these doctors are right. Could be left frontal lobe confusion, not schizophrenia.

Lisa: Is that an actual diagnosis?

Rob: I think so.

Lisa: Do you think schizophrenia — especially hearing voices — has opened you up to sexual experiences you wouldn’t have thought of otherwise?

ROB: I’ve never eaten other people’s poo, or my own, but I think about it. I peed my pants one time and got off on it. Another time, I was at the Greyhound station and this guy drove up to me and said, “Get in.” He was like fifty, or even sixty-five. I was feeling vulnerable, so I got in and gave him a blowjob for money. Earlier, I’d taken a poop in the woods and wiped it all over my stomach for some reason. After he came, he said, “Get out of the car and wipe the shit off your belly.” So I got out and started wiping it off and he sped off without paying me. But yeah, voices tell me to do sexual things. They don’t say it outright. They say it like in code. It’s hard to describe. Yesterday I masturbated in a clean bathroom and a voice said: “At least he does it clean.”

Lisa: What was that code for?

Rob: I don’t know — maybe that I didn’t touch anyone? I met my last girlfriend in a homeless shelter in Arlington. Her name was Grace. She was a nice girl. She was kind of weird — she wouldn’t tell me her real age. I think she was maybe nineteen, maybe sixteen. I knew that she liked me because one time, in a dark corner of the entertainment room, she stuck my hand down her pants. They let us leave the shelter on New Year’s Eve. We went to a cheap hotel and had sex. It was good. She was young though — she didn’t really orgasm. She smelled really good.

Lisa: Was it sort of romantic, meeting in a shelter, the cheap hotel — like you’re rebels?

Rob: Yeah, she was like that anyway. She referred to me as “one screwed-up motherfucker who’s gonna fuck everything up.” She was screwed-up too. We were screwed-up together. Grace helped me get an email address at the library. When I got kicked out of the shelter for not coming back one night, and got sent to another shelter, we emailed each other. Then I got housing the end of January. I asked her to come over, and we panhandled and some lady gave us ten dollars. I bought cigarettes and coffee. That was the last time I saw her. I had sex with this other girl, Alexandria, in August of 2000. She was kind of smelly and she had bad teeth. After I spent my whole social security check on her so she could get a tongue piercing, we had sex. The next day we were at the bus station, talking about living together at her mom’s house once I got my next check. She said she had to get her purse that she’d left in the woods. She said she’d be right back but I knew she wouldn’t, so I got pissed and left. I went to DuPont Circle — that’s where the gay people are — and this guy picked me up and we spent the night at his apartment in Maryland. He was Hispanic and muscular. The next day I asked him for money, and he gave me five dollars. I’ve tried to hustle before, but it always turns out that you get like two or three dollars and a piece of chicken and that’s it.

Lisa: Do you think being so ambulatory makes your sex life more adventurous?

Rob: Maybe more adventurous, but more infrequent too. I haven’t had sex since Alexandria, except for one prostitute in San Francisco. These people that have jobs and stuff, they get to have sex all the time. At least that’s what it seems like.


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multiple sclerosis |
schizophrenia |
quadriplegia       

  

           

  

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QUADRIPLEGIA

Often, the usual sensation of orgasm is lost in the person with a spinal cord injury, but “phantom orgasms” can be experienced in other parts of the body. Paul has never had one of those, so he couldn’t tell me about it, but he is a frank, funny guy, and a web flasher from the UK.

Lisa: Your website links to naked pictures of you. Why?

Paul: To show disabled people are still sexual beings.

Lisa: Do you do any “made to order” photos of yourself?

Paul: Yes, I do requests as long as they can be done on the web cam.

Lisa: Have other disabled people written to say what you’re doing is cool?

Paul: Yes, some disabled and non-disabled people have sent me emails to keep up the good work. Unfortunately, many are from men who fancy me!

Lisa: Were you this much of an exhibitionist before the accident?

Paul: No, I was very shy before my accident. Dealing with lots of nurses doing extremely personal things to you — sometimes in front of other people — knocks off your shyness.

Lisa: How did the accident happen?

Paul: I was driving up a narrow country lane, and there was a blind corner. A garbage truck too wide for the road was coming down toward me; it went over the top of the car. It broke my neck, so now I’m a quadriplegic. My nervous system was damaged along with my spinal cord. I can feel touch, wind, etc., but nothing sharp or hot or cold from the chest down. My arms are okay though. I have partial use of my legs, and can stand on them if my leg muscles spasm and lock in place, but I still have to hold onto something or someone for support. My balance is not brilliant, as I have no chest or stomach muscles. That means I look tubby even though I am the ideal weight for my height.

Lisa: How do friends and family react when they learn you still have a sex life?

Paul: The family of my girlfriend asked her if I could still “do it” — and was I any good?!

Lisa: How do you do it?

Paul: It takes planning. I wear a leg bag for pee . It can also serve as a condom, but if I want to take it off to have sex, I can’t drink fluids for three hours beforehand and I have to use a catheter. Sex is altogether less spontaneous since the accident. I no longer get hard just thinking about sexy things, but I can stay hard as long as I’m played with. I get frustrated that I can’t do some things, but I try to make up for it with imagination and doing the things I can do very well. For instance, I can’t be on top, but a girl can ride me for hours. I can have sex with a girl sitting on me in my wheelchair, but it’s better on the floor or my bed. I don’t have to try to balance when lying flat (plus it’s less stress on the wheels). I had sex even while I was still in hospital. I can only have an orgasm while kneeling — I sit back on my legs, and the muscle spasm from my legs gives me that extra oomph. I also like oral sex, both giving and receiving.

Lisa: How have your relationships with women changed since the accident?

Paul: I tend to try harder to please a girlfriend now, so they stay and are not taken away by the first non-disabled person who comes along. Like meals out, flowers, lots of attention. The girl I was engaged to at the time of my accident went off with my cousin who was bringing her to and from the hospital (I was there for nine months). So, I look for a girl I can trust. I’ve lost confidence because of some bad experiences. I dated a girl and we went for a meal, then I gave her a lift on my chair to the car, got kissing in the car then she touched my leg bag. I told her what it was and she seemed to be okay about it. I took her home, but she phoned later and said she wanted to be just friends. When I’m driving, quite a few girls eye me up, but when I push past them later in the wheelchair, they look the other way.

Lisa: Does a certain kind of woman tend to be attracted to a fellow in a wheelchair?

Paul: Some women flirt with me because they feel sorry for me or they’re drunk. Some flirt because I am “safe.” A lot of people touch me — possibly because I am down low and seem cuddly. I get a lot of patting on the head.

Lisa: Does it annoy you that people see you as safe, or do you figure, what the hell, if it works . . .?

Paul: It does hurt my feelings a bit, because being safe can be seen as not being sexual. It’s nice to be cuddled but you know it’s only because they feel sorry for you and very rarely does anything come of it. Some women sit on my lap, but they always worry if my legs can take it. I tell them I had a sixteen-stone girlfriend who used to take rides all the time! I used to go out with one male friend and I’d pull all the girls. He would get jealous and complain, “What do you see in him that you don’t see in me?” I have had a couple of one-night stands, too — one was married and one was the motherly type.

Lisa: Do you feel less sexual now?

Paul: I sometimes feel asexual, but this is only because people react to the chair — also, I am at a disadvantage because they can’t see my bum.


blindness |
multiple sclerosis |
schizophrenia |
quadriplegia       

  

           

ABOUT THE AUTHOR:
Lisa Carver is the author of the books Dancing Queen, Rollerderby, The Lisa Diaries and Drugs Are Nice. She’s written for Hustler, Index, Icon, Feed, Newsday and Playboy, among others. She lives in New Hampshire.

©2000
Lisa Carver and Nerve.com