The Ultimate Guide to Sex and Disability (37 page)

The way we communicate may make it harder for some of us to give information about abuse or assault. We may never have the chance to disclose the abuse if the abuser is our primary support worker and goes with us to appointments. We may also not know the words or have the vocabulary to describe what's been done to us.

Reporting of abuse or assault is essential and crucial, but is not easy. Support services must be in place so that the person who reports abuse is not at further risk. If the abuser is a support person, they must be dealt

with and replaced before the person returns home. If it is a relationship partner, the person may not be able to return home, particularly if the partner is the one who is the primary caregiver, cares for the children, or actually lives in the same residence as the victim. Group homes and institutions must have protocols protecting residents when they disclose abuse.

What Happens as a Result of Sexual Abuse or Assault?

/ am a survivor of incest and medical abuse. The only effect that I think it had on the development of my sexuality is that while society was telling me that I was not a sexual being because I was disabled, I knew better because my father and others were treating me sexually

It is hard to express myself sexually because of abuse.

I was sexually assaulted when I was twelve by a missionary. He and I were close and I told him I had a crush on another missionary When it happened I was pinned down. I have allowed other men to abuse me but not to the same extent as that man. Most times I have a hard time getting it up with another man. Masturbation is easy but it is hard to relax when a man wants to do me. I am slowly learning about what I like sexually Communication is an issue. But recently I have had a good sexual experience. So now I know what a good sexual experience is. So I think I will have a hard time going back to my old ways of enduring bad sex with partners I am not attracted to. In the past I thought that I did not deserve a partner I found attractive. That I had to settle for what I could get, 'cause that is what someone like me has to do. I now know I was wrong.

People who have been sexually abused as children commonly experience feelings of alienation and isolation. They may feel different, or

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describe feeling outside the realm of being human. An experience of "differentness" is common for people with disabilities, even those of us who haven't been abused. Many of us have experienced devaluing attitudes toward our disability or health condition. As a result, we may have feelings of shame, abnormality, and nonbelonging. These may compound similar feelings that arise from being abused. We may come to believe that we are not like our "nondisabled" peers in terms of life experience. We may see ourselves as being different from them sexually and attribute it to the disability instead of to the assault.

When I first started talking about the assault, it was in a group with other survivors. I was the only one with a disability. For the longest time I believed that the feelings of shame and guilt associated with the rape were because there was something about "me" that caused this to happen. I didn't know of other women with disabilities who had gone through similar experiences.... I felt so alone. I figured it was because of my disability and that I was somehow "deviant" and that's why I deserved it. After hearing from the other women in the group, I began to think differently and saw that it wasn't just because of my disability.

Trauma is physical or emotional damage that is the result of being hurt by something or someone. Trauma is experienced differently by all of us, and no one's experience of the event is exactly the same as anyone else's. Disability and how we have experienced our disability also have an impact on the experience of trauma and the process of healing.

When I started looking at the abuse in my life, it wasn't always easy to figure out whether the feelings of hatred I felt about myself was because of the abuse or because of how I was treated by my family because of my disability I couldn't separate them because it felt like they were linked to one another. Finally I'm able to see that I have a right to feel safe. But at times, it is still a challenge to see that I am entitled to other rights, like the right to be treated with

dignity and respect, which is probably related to how I see myself as someone with a disability.

Some of you reading this have been sexually abused or assaulted. You may not have told anyone. Or you may be working with a counselor or therapist to help deal with the effects of the trauma. You may be ready to explore or consider how the violence can affect your sex life and sexuality.

There are some effects that many people commonly report as a result of being abused or assaulted. General effects include difficulty falling asleep, poor concentration, and feeling removed from your body. Flashbacks are vivid memories of the event or events. It is as if the experience is happening again. Flashbacks can be triggered by a smell, sound, or sight; by the time of day; or for no obvious reason. They are often accompanied by a fast heart rate and sweating, and can be triggered by sexual acts, including masturbation and fantasy. Other sexual effects include feeling mistrustful of potential sexual partners, a fear of being touched, guilt about sexual enjoyment, difficulty having orgasms, decreased sexual desire, and problems talking about sex.

Even without flashbacks you may have a feeling of dread or terror when you find yourself in a sexual situation. It can be difficult to stay present when making love with someone instead of retreating to a safe mental place.

/ myself was not molested as a child. However, about nine years ago, I learned that my sister, with whom I'm very close, had been molested by our father as a child. That revelation escalated the fears I already had about sex. In fact, for months after learning about the incest, I couldn't bear to be touched by almost anyone at all, and had to stop my friends from trying to hug me.

After sexual assault, you may experience a range of feelings related or connected to sexual pleasure, some of which may be conflicting. Some people might feel numb or only pain, while others may feel sexual arousal or experience orgasm. Feelings of fear, disgust, anger, shame, confusion, and betrayal can be intertwined with posi-

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tive feelings. People may feel guilty about experiencing sexual pleasure. Some abusers try to make their victims feel sexual pleasure. This helps them justify what they are doing. They also think, that way people will be less likely to tell about the abuse. They may say, "See, you really did want it." It can be devastating to experience pleasure or an orgasm while being assaulted. We may feel that our body has betrayed us. We may feel that the assault is our fault, try to minimize its effects on us, or come to believe that it isn't really an assault. We may feel angry with our bodies for having a sexual response during a negative experience.

One of the worst things about an assault is loss of control. As a result of having suffered an assault, some people feel the need to be totally in control of every other aspect of their lives.

Years later, I see how affected I am by the abuse. I don't like surprises...! don't like being caught off guard. Once my friend tried to throw me a surprise birthday party and I froze. I disappeared somewhere "safe" and couldn't stay at my own party. Luckily there was someone there who I trusted and she helped me get a ride home with the accessible cab. I was totally overwhelmed by old feelings of fear and terror, like when I was a little kid and wasn't sure when my father would come in at night.

Feelings of self-hatred and worthlessness are common, and may become even further enmeshed when living with a disability or physical "difference." Some people feel they are "too damaged" to be able to ever have a sexual life.

There can be physical effects of an assault as well. Sexually transmitted infections, including gonorrhea, chlamydia, hepatitis, HIV and human papilloma virus, and herpes can all be transmitted during an assault. Pregnancy can occur. Vaginal or anal tissues can be damaged. It is important to be checked for these physical problems, even though physical examinations, particularly pelvic and rectal exams, may be difficult to go through. Having a supportive friend or counselor with you during an exam may be helpful.

What Can I Do to Have a Healthy Sexuality?

Healing takes place on many different levels. Regardless of whether you are celibate, dating, or in a relationship that is short-term or long-term, it is possible for you to heal sexually. It can take serious work to be able to reclaim your sexuality. Remember that the abuse was not in your control and was not your choice. It is possible to experience your sexuality in a different, positive way.

When I am with a new lover I need to go really slow, moving from kissing to sensual touch to maybe penetration. It takes a long time for me to allow myself to trust new lovers — not only because of the abuse but also because of how I feel about my body because my body doesn't quite fit the ideal of what a "normal" body should be. I've tried to really work on changing how I feel about myself and, for the most part, I've been able to stay focused. Sometimes I find that I fall into old routines when I feel vulnerable. I need to know that I can initiate sex and I can also stop it when I need to.

I also endured a rape incident at the age of nine, while I was at summer camp. This, compounded with struggling with my sexual identity and my illness, has strengthened me. I have faced some hard times, but I am a survivor. My experiences and others give me hope about the resiliency of the human condition. I am better able to extend a hand to others in need; a lot of times, I have been in similar predicaments to theirs. I must admit that it is difficult to enjoy sex at times because illness and the rape have made it somewhat harder to see positively. I generally don't like dildo penetration because a lot of times it hurts my belly. I masturbate with my hands and perform oral sex with female partners. I work at being more and more positive about these issues every day. There are many others out there who face similar paths, and I know that I am not alone.

Many people find it helpful to have someone to talk with about how they are feeling. This does not mean that you have to go over the actual

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abuse again and again. Some people find they need to talk about the abuse, others don't. There is no "right" way to feel. Some of us have very few effects of abuse or assault and do not need or want any counseling. This is okay.

If you have sexual effects, it is often a good idea to begin your recovery with masturbation, rather than having sex with someone else. With masturbation you have total control of what is going on and can go at your own pace.

You may experience flashbacks even when masturbating. Try not to panic. Flashbacks can provide valuable information about your experience of abuse and can give you a chance to release some feelings that you've held on to. If you are feeling panicked, open your eyes and try to ground yourself. Focus on something in your room that will allow you to connect with the present. Breathe slowly with a long exhale. Remind yourself that you aren't being abused now, it is you touching yourself, and you are in control. You have a right to touch yourself in a loving way, you deserve pleasure, you deserve to be touched the way you want to be touched. You deserve to heal. Orgasms may bring on a number of different feelings. Enjoyment may be mingled with fear or guilt. You may want to masturbate without having an orgasm. This may help you look forward to touching yourself. If you have been having difficulty achieving orgasm, this can take the pressure off for a while.

Feeling ambivalent or negative about our bodies is common for many of us living with disabilities or chronic health conditions. If we are living with our disabilities from birth, we may have learned from our families, nondisabled children, and other adults (including medical professionals) that our bodies are physically deficient, incomplete, or defective. If we underwent a lot of medical interventions and hospitalizations, we learn quickly that our bodies "do not belong to us." Our bodies are seen as something that has to be fixed or changed. We are not good enough as we are. If we are augmentative or alternative communication users, we may not have had the vocabulary to talk about our experiences. For those of us who are survivors-of abuse or assault, these feelings can be compounded by seeing our bodies as "damaged" or "broken"

because of the sexual violation we faced. You can do various exercises to help you see your body in a more positive light. You can find one thing about your body that you like every day and write it down. Find pictures of yourself that you like and put them up where you can see them. Make an attempt to believe people when they tell you that you are looking great, or when they compliment you. Try to notice the parts of your body that are not causing you pain or distress. If an abuser said negative things about how you look, challenge those statements by saying the opposite statements out loud. More resources are offered in the Sexual Assault Resources section of chapter 14.

Acknowledging how my body is changing to tolerate less stress or use was most important in learning that my goals can change from minute to minute during sex. This didn't deemphasize orgasm, but it did give me more fluidity during sex. That acknowledgment made it more comfortable to me to stop sex at any time for any reason. After I got to that point — primarily through struggling with my pain and limited mobility —/ was better equipped to deal with the trauma of sexual and emotional abuse that kept me from having healthy sex. If I could stop sex because my joints were uncomfortable, why not stop sex because my soul is uncomfortable? This was tremendously important to my sexual healing. And, as a result, only a few months ago I really started being able to have an orgasm with a partner.

Learning to say "no" to sex when you don't want it is a key element on your road to reclaiming your sexuality. If you're not able to, it is likely that the experience of abuse and the feelings associated with it will be repeated. Being able to say "no" means that when you say "yes" you really mean it. It gives you control and a sense of safety. We know that for many of us living with disabilities, learning to say "no" is not easy. The habit of compliance learned from an early age may compromise our emotional and safety needs.