The Ultimate Guide to Sex and Disability (2 page)

THE ULTIMATE GUIDE TO SEX AND DISABILITY

Myth #7: People living with disabilities and chronic illnesses are not sexually adventurous.

and

Myth #8: People living with disabilities and chronic illnesses who have sex are perverts.

These myths are two sides of the same coin. On the one side, if you look as if you live with a disability, it is assumed that you are passive. This assumption is generalized to all areas in our lives. It is taken for granted that people living with disabilities are sexually passive and noninitiators. People can't imagine that someone who uses a wheelchair might want to be tied up and spanked, or that a man with no legs gets off dressing up as a ballerina. A second layer of meaning related to this myth is the idea that all anyone wants is to be just like everyone else. So to those of us who are seen as different in some major way, it is particularly important that we pass as "normal." We all know that "normal" people don't like to dress up or get spanked, right?

The "pervert" myth, the flip side of the same coin, paints a picture of the dirty old man with the cane eyeing all the young, nubile whatevers in the park. Ageism and disability often go hand in hand in the way they marginalize people. Underlying both these myths is the notion that people living with disabilities and chronic illnesses are "other" and that for them to have any interest in sex is perverted.

Myth #9: We all get what we deserve, and we can always do more to help ourselves.

Whether we believe in karma or a simple do-unto-others philosophy for daily living, most of us are taught to believe that good things will happen to good people and bad things to bad people. Thus it follows that if you have HIV, use a wheelchair to get around, or have trouble breathing, then you must have done something to deserve it. If we believe bad things

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happen to bad people, we then don't have to imagine the possibility of a similar reality for ourselves.

So if we are experiencing too much pain to enjoy sex, there must be a reason. This irritating message often comes in the form of well-meaning suggestions from friends and family about doctors, chiropractors, naturopaths, herbalists, massage therapists, talk therapists, and others. Maybe we should try this, or that, and then well be better, or perhaps even okay. This is no different from the habit most of us have of blaming the victim, by wondering or overtly asking "Are you really doing enough to change your situation?"

The reality is that no matter how much we love ourselves, no matter how skilled we become at negotiating the particulars of our self-care, some of us experience physical pain that won't go away. That pain becomes a fact of our lives. With life often comes pain—as unacceptable as this idea is to many people.

Myth #10: People living in institutions shouldn't have sex.

One of the greatest barriers many people living with disabilities face when trying to develop a positive sexuality is a lack of privacy. Nowhere is this more evident than in institutions like rehab hospitals, hospices, group homes, and nursing homes. Most such institutions systematically deny residents the right to be sexual, whether alone or with others. No locks on doors; no privacy; the right of staff to treat people as objects to be carted around, talked about in the third person even in their presence, and controlled—these are just a few of the ways that institutions make it clear that sexuality is not acceptable. The underlying belief is that people's behaviors must be monitored because they are incapable of monitoring themselves.

Living in an institution means that I have no privacy. I have a crush on the guy who lives here and some of the staff found out. Well now they are always making comments about "how cute it is" when we are together. When he and I have a chance to be alone

in my room listening to music, we might be cuddling or holding hands while we're in our wheelchairs. I don't know how many times the staff come and knock on the door, telling us that "doors must be open at all times" unless the staff are in here with us. I hate it and I feel that I don't have anyone here that understands how alone I feel.

This leads us to another myth.

Myth #11: Sex is private.

If we were taught anything about sex at all when we were younger, many of us learned that sex was something private, inappropriate to talk about or do in front of others. Privacy becomes a requirement for sexuality. For someone living in an institution, or using attendant services, or needing the assistance of someone else to facilitate communication, privacy is a completely different reality. The definition of privacy changes when you have no lock on your door, or when you request private time at a specific hour knowing that it will probably be written down in a logbook. This myth is one of those "no-win situations," because we're told that real sex is a private matter and, guess what, you can't have that kind of privacy.

Myth #12: People living with disabilities and chronic illnesses don't get sexually assaulted.

If you aren't seen as sexually desirable in our culture, you won't get sexually assaulted, right? Wrong. People who live with physical disabilities are far more likely to be victims of sexual assault than those who don't live with physical disabilities. Some statistics suggest that people living with disabilities are two to ten times more likely to be assaulted than those who do not have disabilities. This abuse ranges from pervasive power abuses by medical and rehabilitation staff to rape and other forms of sexual assault, forced confinement, physical abuse, and more. Supports for disclosure of the abuse, legal action, and counseling are scarce for

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people living with disabilities. This is especially true in institutions that maintain a culture of secrecy and keeping things private, which in turn allows more opportunities for other forms of abuse.

This myth sets up one of the most horrific, self-perpetuating cycles: If you are not at risk, why bother creating programs for prevention and support? This attitude places you at greater risk, and the cycle continues.

Myth #13: People living with disabilities and chronic illnesses don't need sex education.

The false beliefs we are outlining in this chapter tend to build on each other. So, if we aren't considered sexual, then there is no reason for us to get sex education. Sexual ignorance is an enormous obstacle for all of us when trying to figure ourselves out sexually. Our situation is made worse when we are systematically denied access to the little bit of sex education most people get.

Another layer of this idea is the belief that if you tell someone about sex they will immediately become fucking machines. And few things scare the nondisabled public more than the idea of people living with disabilities reproducing. This is especially true for people who live with intellectual and developmental disabilities. For those of us living with other types of disabilities, we also face huge obstacles to having children. Part of what motivates people to deny sex education programs to people living with disabilities is the perception that such programs will open up a can of worms, which the nondisabled professionals will "have to deal with" because those of us living with disabilities will be incapable of handling it responsibly and it will become someone else's problem.

With very few exceptions, sex education programs designed for people living with disabilities take a cookie-cutter approach to sexual response: If you have an SCI at such and such a level, then this model is what you can expect for your sexuality. If you're seventy years old and just had a stroke, then your sexuality will look like this.

In this book we take a fundamentally different approach. We want to help you become the expert about your own sexuality.

Myth #14: People living with disabilities and chronic illnesses are unnatural.

My level of dependency presents me as a "passenger" in other people's eyes.

This is the same us-versus-them dichotomy that society maintains in regard to sex, race, religion, and all the other ways that people differ from one another. Lots of different ideas have been floated about why it's so important to maintain this difference when it comes to disability and illness. Some say people are ashamed of the way nondisabled culture has treated people living with disabilities. This shame makes it hard for the nondisabled to start seeing "us" as really being part of "them" because that would mean acknowledging all the horrible things "they" have done to "us" (confusing, isn't it?). Others say the reason is nondisabled people's fear of pain, suffering, and death—all the things that are equated with disability and illness. Whatever the reason, it is clear that many nondisabled people have a lot invested in maintaining this distinction.

Aside from all the obvious ways in which this myth is used to justify segregating people living with disabilities from society, it's interesting to notice how this myth also defines disability as that which we can easily recognize. Many disabilities and chronic illnesses are "invisible." If you live with endometriosis, or you've just been diagnosed with MS, or you have chronic fatigue, or are hard of hearing, you don't really fit into either category. You may feel disabled, but nondisabled people will treat you like one of their own because you look "fine." So where do you fit in?

/ have chronic fatigue and for most people who first meet me, they have no idea. This is a real issue when going out on dates for the first time and trying to figure out "when do I tell them about this?," especially if they want to plan something that will require a lot of energy such as dancing or some other type of physical activity

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Initially, most people are okay with it in the beginning, but when it starts to interfere with their "fun" then it becomes an issue. It's hard for them to understand the times when I'm feeling good and we are able to do things together, to then to see me suddenly crash and need to hibernate for a few days and not do anything. Sometimes they take it personally or get frustrated. Some relationships have ended because I haven't been in the space to negotiate their discomfort.

Some people feel that not fitting in with the dominant norm and experiencing life with some sort of "difference" is in fact a great benefit, because it both releases them from the expectations of others and allows them to look at themselves in new ways.

In our culture we are bombarded with messages about who we are supposed to be, how we are supposed to act, and what our lives are supposed to mean. Therefore it's hard to separate the expectations that have been placed on us from our own feelings and needs. This is especially true about sexuality. In the following chapters, we will offer specific ways to liberate our sex lives from the limitations of these damaging myths and unrealistic expectations.

It took work as a teenager to reconcile my version of who I am with the world's version of who I am. Now, I live with my version, though occasionally that collides with the world's perceptions. For example, if someone hands me money on the street, I could interpret the gesture as their belief that I am impoverished and unable to earn a living; however, my version of it is that they are paying me for brightening up their day with my charm. Okay —/ am being tongue-in-cheek here, but my point is that I prefer to change what I can that I don't like, but let the rest roll off my back. I can dwell on those situations that could whittle at my self-esteem or I could say, "Forgive them, they know not what they do." I'm not passive, though — if I think that a person is trainable, I will attempt to educate them. Meanwhile, I am the person in control of how I feel about myself, not others. I chose to keep that power.

Exercises

1. Can you think of a recent situation where you were the brunt of someone's negative beliefs about sex and disability or illness? Was it something said by a friend, family member, or lover? A character in a movie or television show? A look or gesture from a stranger? How did you respond?

2. What about your own biases regarding sex and disability or illness? Do you think disabled people "should" be sexual? What kinds of sexual activities do you think are "normal"? What things do you think are "wrong"? How have your beliefs influenced your interactions with others?

what we desire. Desire, whether or not it is sexual, is a physical sensation that can be felt as a tugging of the heart as easily as a throbbing in the groin. It can arise from many different stimuli, physical, emotional, and mental. A smell can trigger desire, but so can a sexual fantasy, or an attractive person passing by our window.

Unfortunately, many of us go from desire immediately to all the reasons why what we want is wrong, dirty, or immoral. We may think that it would be acceptable for someone else, but for us it either can't or shouldn't happen. In doing this we immediately shut down our desire.

But a magical moment occurs before we get to the negative thoughts that shut us down: a moment of desire, something we all experience regardless of physical, mental, or emotional disability. Linger in that moment, relish it and the many possibilities it presents.

How Important Are Sex and Desire?

Sexuality fluctuates in its importance in our lives. At times it is not a focus at all—those times when we are wrapped up in other aspects of our lives. At other times, sex is all we think about. Different people have different levels of desire, and we all have different intimacy needs as well.

Sexual desire becomes a problem when we deny we are feeling it. It's when we close ourselves off to the possibility of sexual desire, or when we ignore that desire can be played out in all sorts of ways, that we get ourselves tied up in knots and fail to get what we really want.

Sex has always been and continues to be an important part of my life. My husband and I can be emotionally and physically close in many ways — talking, cuddling, etc. — but there's just no substitute for the intimacy and satisfaction that comes from great sex with the partner you love. Sex isn't the most important thing in life, but it's right up there. I've had bilateral total knee replacements, two different femur fractures (one required me to wear a cast; the other required surgery), and other injuries such as tendonitis. Through it