Written by Geri Newton
Sexual awareness is normal. Sexual feelings are normal, and there are many ways of expressing them. If a person has a disability, it does not change any of this. What often changes is the socialization that provides the foundation for sexual identity.
In America, people with disabilities are sometimes oppressed and treated as ‘less than’. This can have a profound impact. Often, people with developmental disabilities feel they are bad or that something is wrong with them. By extension, they can feel that their normal sexual feelings are also bad or wrong. Human sexual drive is a primary drive; it is not optional. We have a sexual drive as long as we have enough to eat, drink, and sleep, and are not under undue stress.
As parents, it is critical that we give our children a loving understanding of sexuality. If we give them the message that their sexuality is precious and wonderful, then they will have some information with which to balance the rather conflicting messages they will likely receive from the dominant culture.
Children. In the early years, we give children information on being a boy or a girl. It is also helpful to give them correct names for their body parts including penis, vagina, and anus. These terms should be taught using relaxed and open language.
Children will fondle themselves during early childhood. Not responding to this behavior is fine in the early years. If this behavior occurs during dinner or at Aunt Martha's birthday party, then distracting them without drawing attention is certainly appropriate. When they are old enough to be aware of others around them, saying to them: "I know that feels good and it is supposed to feel good, but it is also something that is special and private." This type of explanation would help them understand their sexuality. Whatever words you choose, they will best serve a child by imparting the notion that sexual feelings are wonderful and very personal. Bath time is also a good time to teach body awareness including the need to treat one's body with respect. Based on my experience, I believe this can be taught, regardless of the identified level of disability.
If we allow the child's disability to keep us from teaching these concepts, then we will leave him/her vulnerable. Just as children learn to eat, drink, sleep, and deal with fear, they can learn to express their sexuality. In fact, children need appropriate support to express themselves sexually; and this support includes information about appropriate boundaries and various ways to show regard for one's self.
Teenagers and Adults. By the time they move into their teens, they will experience changes in their bodies that are reflected in their sexuality. They will begin to experience orgasms. They will grow pubic and underarm hair. Overall body hair will change. A young man's voice will change. A young woman will begin to menstruate. Imagine going through these changes without knowing the names of body parts, without the preparation of anticipating change, and without the awareness that someone trusted is available if he/she has any questions. This type of information helps these individuals know that they are not "falling apart" and that they can ask questions. It is not enough to just wait and then tell someone "oh, by the way, ask if you have questions."
Around this time, young men and women may begin to masturbate. This activity can be engrossing after bringing oneself to orgasm the first time. This is normal and should not cause undue concern unless they are so engrossed that they are missing other parts of life. In that case, it would be helpful to assist them in understanding balance in their activities. It may be as simple as letting them know that evenings and bedtimes are good times to masturbate, whereas daytimes are important to develop other interests.
This is a good time to explain further the function of body parts. For young men, explain to them why they cannot urinate with an erection, how a penis works, etc. For a young woman, explain to them where to find the clitoris and what it does, and why she menstruates. If a person has autism and experiences tactile defensiveness, masturbation may look different. The individual may rub harder or with short rapid movements, more like a grinding motion. It is important to determine if the person is still enjoying the sensation and not causing harm to him-/herself. If he/she is causing abrasion to the tissues, offering K-Y jelly or some other water-soluble lubricant may be helpful.
After a young woman begins menstruation, she is old enough for regular vaginal exams. Many will be terrified of these exams. Women with disabilities often need training on how to breath during an exam, how to relax the vaginal muscles, and how to be assertive with the physician in order to go through exams without being medicated. Women who do not speak can be taught to use gestures to tell the doctor to "stop" or "wait."
This is also the time when parents may begin to worry about pregnancy. In Oregon, we have a strict law regarding sterilization. This law came about because many women and men with disabilities were abused. It is nearly impossible now to sterilize a person with a disability. Good self-care and an understanding of one's sexual needs and responsibilities can keep a person as safe as possible under normal circumstances, but there will be times when concerns about pregnancy and/or sexual behaviors will result in the need for oral or other forms of contraception. As a result, many people have used chemicals to prevent pregnancy. Self-management techniques may also be useful when teaching appropriate sexual behavior.
Sexual abuse. Another important consideration is sexual abuse. Women are abused sexually at alarming rates. Women who have a disability appear to be abused even more. While accurate statistics are difficult to obtain, it is certain that all women and men with disabilities need to be aware of their healthy sexual options; and they need to know what to do if faced with sexual abuse or sexual contact that makes them uncomfortable.
It is important for people to understand that nothing they do makes someone abuse them. It is the perpetrator who makes the decision to sexual abuse. Therefore, when teaching people about how to say "No" to unwanted sexual contact, we must be sure to avoid giving the impression that they are responsible if they are abused. Nothing could be further from the truth.
In order to teach assertiveness, like saying "No," we have to stop teaching command compliance. We should teach negotiation, compromise, etc., but not compliance. We can also teach them to discriminate between reasonable and unreasonable requests, how to be assertive, and how to find an appropriate sexual partner. If we tell people that they cannot have sex, then we increase the risk that they will respond to their sexual feelings and not tell us. If they are abused, we may not know it unless we can spot the indicators.
It is important to help adults understand that if someone is trying to talk them into something without respecting their feelings or wishes, then the safest answer is "No." Sexual abuse is not about sex. Sexual abuse is about power. If we support people to define their own style of personal power, they are in a better position to understand someone who is trying to control them. A person who listens to the wants and needs of others is more likely a safe partner. We can teach this using role-playing.
Many of my clients have told me that having sex with someone is the only time they feel normal. They have a job that they know a "normal" person would not have. They cannot drive. They are not free to go where they want, when they want. They always have to tell someone where they are and who they are with. They feel like they are treated like a child. Yet when they are sexual with someone, they are just like everyone else--a grown-up. I have received this same message from people with identified IQ's from 30 to 70, verbal and nonverbal.
Unfortunately, some people are victimized sexually because they value the feeling of sexual activity. If we can recognize the power of an abusive relationship because of one’s sexual feelings, we will be better able to support people in developing ways to discriminate respectful relationships that can grow and benefit both people.
Sexual relationships. It is important to teach the context for a sexual relationship. This starts to develop during the early teachings of how and where to masturbate; how to enjoy sexual expression; valuing self; showing respect for others and expecting respect towards self; learning to express emotions such as anger, sadness, and joy in ways that other people can understand; and developing a sense of style.
Adult men and women who have disabilities may or may not be aware of their own attractiveness and how they present themselves to others. Women who have a disability may want to shave their legs in the summer. Men may want to experiment with hairstyles. Both may want to decide what looks best on them. This may seem trivial, but it is important; it allows them to deal with the world.
Some individuals with autism may need specific instructions about social expectations. Some manners, ways of conversing, or sexual mores may not have meaning for them in the same way a person without autism might experience them. For these individuals, it is important to provide them with ample information about social rituals and boundaries. Role playing, discreet reminders when in public, and lots of practice are helpful.
People are sexual beings. It is not a choice or an option. It is a truth. The best sex education is a full awareness of social skills, boundaries, sexual expression, and expectations.
Geri Newton is a consultant in ethics, sexuality and therapeutic interventions. If you would like to contact Ms. Newton, her office number is: (503) 363-6347, and her mail is: firstname.lastname@example.org