The Ultimate Guide to Sex and Disability (3 page)

DESIRE AND SELF-ESTEEM • 15

all, my husband and I managed to have sex within days after my surgeries and even with my long-leg cast on! It was challenging but fun and well worth the effort. At times, I have a lot of pain with my arthritis but when I'm having sex, I forget all about it. And the release of endorphins is wonderful!

Self-image and Self-Esteem

Thousands of books, self-help courses, infomercials, and talk shows have been devoted to self-image and self-esteem. But what do these terms really mean? Self-image is simply your view of yourself. It includes what you think you look like and what kind of a person you think you are. Discrepancies always exist, of course, between how we view ourselves and how others view us. Many of us have a very stable self-image that doesn't change even when our weight, hair color, or skills change. This can be protective, but it can also make change difficult. If you have learned to view yourself as a nonsexual person, it can be hard to start thinking of yourself as sexual or sexy. It may be painful to even consider contemplating yourself in that light.

How I see myself definitely affects my sexuality and vice versa. There are times when I feel very sexy and know that people are interested in me, and those times are great. But I have also gone through long periods with no one asking me out, and I felt completely like this ugly, undesirable person. Over the years I've found some tricks, like getting myself new clothes — in my case they are new used clothes, but new to me! I change my hair A LOT, and try to spend more time with friends, but it can be hard to get out of the rut of feeling like no one is ever going to want to fuck you again. At these times hearing nice things from my friends doesn't really help.

Self-esteem is more complicated, as it involves an implied judgment. It also involves how we feel about our self-image. Some people say that how we feel about ourselves—our self-esteem—can be expressed as the

difference between the way that we want people to see us and the way that we think we are.

/ hate being disabled. Being disabled has stunted my growth, deformed my spine, made me poor. All this affects my self-esteem. Few people are attracted to impoverished, deformed cripples.

There is no doubt that my disability affects my self-esteem, but this is not due to my disability, but because of society's attitude toward those of us who are disabled. We are made to feel like second-class citizens just because we are unable to partake in certain activities or we may look a little different. Just because I live with a disability does not give people the right to stare, point, or laugh at me. Disabled people do have feelings too, and often a lot of people tend to forget this. We are seen as objects that can provide a moment's ridicule for those with very small minds.

It is very difficult not to internalize negative messages, not to consider ourselves lacking in comparison to the dominant norm. We can do several things to deal with these messages. We can give ourselves more positive messages, and take in compliments when they're given. We can listen to what people who feel good about themselves have to say and use that as a cue to actively speak about ourselves in positive ways. We can try to think about ourselves as attractive, desirable, worthy, and good.

Before I became disabled, I was very much into looking good and keeping physically fit. Sex was usually rigorous and spontaneous. But after my injury that changed. I really wasn't sure who I was. I believed that who I was was wrapped up in what my body could do and looked like. It took a long time and a lot of effort to think differently about myself I still have to catch myself from thinking that I'm not a "real man" because I can't keep up with the boys or have sex like I was used to. Meeting other quads and talking to them about how they were coping let me reevaluate things in my life. I have found that it's easier to just try to be as comfortable as I can with who I am.

DESIRE AND SELF-ESTEEM • 17

Pain and Self-Esteem

My disability is degenerative, but I'm a woman who really likes to do things for herself. Because of that, when my disability is stable (or even improving, like when I get a better drug) my self-esteem is very high. I set limits that push myself, but won't kill me, do as much as I can, and feel very good about myself. I really feel that I put more energy into caring for myself and my community than a lot of people do, so I don't feel shame in asking for help when I feel that I need it or when it would be very good for me. During my downturns, though, I feel horrendous emotional crashes. I don't know where to set my limits, and I'm afraid of the pain. So I hold back, careful not to push my body into a pain crisis, but I worry constantly the whole time that I'm not doing all I could do.

During my worst downturn, for about six years, the pain was so constant and severe that I could sleep only every third night. Even narcotics helped only a little. Though I had hurt constantly for a long time, during this downturn I lost my ability to focus attention on anything other than the deep pain I could only describe as like a knitting needle being pushed into the ends of my bones, sometimes slowly, sometimes quickly, thrusting through the length of them. I'm still not sure how I managed to hold my constant scream inside my chest. At the time, like in other downturns, my self-esteem plummeted. But now, I gain an immense well of self-esteem from the knowledge that I survived when pain was my whole world and no one, not even any doctor, could promise me that it would ever be different.

THE ULTIMATE GUIDE TO SEX AND DISABILITY

Identity and Self-Esteem

A sense of identity includes both knowing who we are independent of the world outside and who we are as part of a larger group or society. Having a strong sense of identity is about being comfortable inside our own skin, belonging to our community. It's one way of knowing for sure that there are other people out there like us, offering confirmation and validation that the way we are is real.

In general, I'm happy with myself. In fact, much of what I like about myself—graduating college, running for office, being elected, being able to get along with a diverse group of people — is directly related to my being disabled. I always thought that if I hadn't been disabled I would've been a jock. I attribute much of my intellectual accomplishments to being disabled and I'm very proud of those accomplishments.

But if you're not so happy with your self, or your community, taking on a new identity is not always easy or smooth. People often assume that simply by meeting the external requirements of a group you must be a member of that group. For instance, that if you look as if you have a disability, you must identify (think, speak, and act) as "disabled." But for any number of reasons you might not feel as if you belong to that group at all.

/ never saw myself as disabled. I've always been able to do whatever I wanted and I was lucky in that I grew up in a small community so all the kids knew me and didn't really treat me any differently. Then I went to high school and there were people from all over. My friends got diluted in the crowds and all of a sudden I was different and it seemed like a bad thing. There was a boy who used a wheelchair and everyone thought we should be friends but I really stayed away from him. I didn't want anyone to think I was disabled like him. I never had a single date all through high school. I think that now that I know I'm disabled things have gotten easier.

DESIRE AND SELF-ESTEEM • 19

Able-bodied people don't seem as scared of me because they don't have to pretend along with me that everything is exactly the same for me. I don't exactly have a date every Saturday night, but I have lots more, and I'm no longer scared to go out with someone who is disabled.

Things can get complicated, however, when you "qualify" for more than one "minority" identity. In addition to living with a disability or chronic illness, you may find yourself to be different from your peers in other ways. Friends who share one, but not all, of these identities may see this as the defining thing about you (so, to them, you are Muslim, or Protestant, first, and everything else is in the background). Some of us who have a minority sexual identity (like being gay, or bisexual) may find it particularly hard to disclose this identity to our families, who we may feel have had a lot to deal with related to our disabilities.

It took me a long time to admit to myself that I was gay. I just didn't want to have to deal with some other big thing in my life. I really didn't want to tell my parents. It has been hard for them bringing me up. It has sometimes been expensive for them, and I know they always worried about me. So, I didn't want to put them through another hard time. Also, I didn't think they would react very well. But then I fell in love and I wanted them to know that John wasn't just a good friend. So I told them that I was gay. They looked kind of stunned; I don't think they had a clue. Then my mother asked if I was seeing someone and I told her that I was in love with John. She started to cry and said that she had always worried that I wouldn't find someone to love who would know how terrific I am and she was glad I had. Now it was my turn to be stunned. My father has taken longer to come around to the whole thing, but he and John both love football, so it gives them something to talk about.

I volunteer at a disability organization. Some of the staff are in relationships and openly talk about them, but I don't feel included in this. No one knows I'm gay and I feel like the things that are

important to me are never spoken about or ever mentioned. I wonder how many people who are gay who come to this center feel invisible?

It may get easier to integrate these various things into your image of yourself as you do it more. So, coming out as gay or lesbian may not seem like such a big deal when you already live with being obviously Latino, and very short, and on dialysis.

Who identifies us first can also have an impact on how comfortable we feel. If you live with a visible disability, it is an identity that you live with, whether you choose to or not. Others have decided that you have a disability, and likely informed you of it early in life. You didn't get to discover it or to choose how much of your identity it would be. Chances are it was made clear to you that this part of who you are was a limitation. By contrast, some families actively deny their child's disability, and that denial can also be a barrier to developing a positive identity that includes disability.

Being pushed to the edges of society because of being identified with a group is particularly hard for children, who often absorb the negative stereotypes of the group into their fledgling sense of who they are. It is important to think about the things we learned as children and the lessons we still carry with us. A positive interaction with friends, particularly in adolescence, can have a profound effect on developing a strong disabled identity. But as we buy into society's negative stereotypes of who we are, and have them constantly drummed into us, we may push ourselves beyond the limits to prove that we don't have a disability at all.

There is another way: Instead of accepting the ideas we receive about disability, we can choose to call ourselves "disabled" and embrace an identity that brings us power, confidence, and pride.

/ don't think the idea of me being a sexual person has ever seriously crossed the minds of the people in my family To them oftentimes I think I'm seen more like a kid than a women even though I am 22.

I've never felt particularly good about my looks or my sexuality/ sexiness. This is somewhat due to my mostly unsuccessful attempts

DESIRE AND SELF-ESTEEM • 21

at finding sexual partners. I'm getting better, but I ain't there yet! Sex is very important to me because I feel if people see me as a sexual person, they can truly accept me as a whole person.

I have always felt very positively about my body and my disability, which has contributed greatly to my sex-positive outlook, and vice versa. Being born with a disability, I've never felt I was "missing" something.

Coming Out as Disabled

For years I did a lot of political

work on different issues. Then I

became sick and, after trying

different treatments, realized

that I wasn't going to get better.

I was in denial for a long time,

in the hopes that things would

change. They didn't. I really saw

for the first time how people

treat people with disabilities —

because that was how I was being treated. It was when I went to

a conference with other women with disabilities that I realized that

that was who I was, I was a woman living with a disability. It's still

something that I'm getting used to in terms of how I see myself, but

I feel less shame about getting what I need around accessibility and

other things.

FINDING MYSELF

During my teen years I was sure that I would remain forever a virgin and despaired about myself. I would spend long hours looking at myself in the mirror convinced I was the ugliest thing ever to walk the planet. I contemplated killing myself and found it very difficult to enter parties or crowded rooms. I wore clothes that attempted to hide my body's missing parts and stood or sat in uncomfortable positions in a vain attempt to hide myself away.

It all changed when I joined a drama group at the age of seventeen and was embraced by a large group of young people who found me no weirder than they were. We all romped around together and I began to see that just because I found myself a total freak didn't mean that everyone did, or that they found freakdom as repulsive as I did. Since those times my image of myself has changed dramatically. In fact, those people launched me on a sexual career of some note and variety.

Coming out to ourselves as disabled can be an important step. The term coming out is usually reserved for people who are disclosing their sexual orientation or gender identity. For example, one might "come out" to family friends, or coworkers as gay, lesbian, bisexual, transsexual/ transgendered, or intersexed.