Having a Daughter With a Disability: Is it Different For Girls?

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A Few Words from Harilyn Rousso

One of the myths in our society about disabled women is that we are asexual, incapable of leading socially and sexually fulfilling lives. When I was growing up, my parents and I accepted this myth without question. We simply assumed that because I had a disability, I could not date, find a partner, or have children. As a teenager and young adult, I put aside any hope of a social life and concentrated on my studies.

It never occurred to me that I had any alternative, that I could have both a career and a romantic life. Betty's lifestyle (another woman wlith a disability), her successful marriage to an interesting, dynamic man made me question for the first time the negative assumptions I had made about my social potential. She planted the seeds of positive possibilities... (Rousso, 1988, p. 2)

Developing a Social World

The teenage years are critical, exciting, stressful times for all young people, with or without a disability. As your daughter becomes a young woman, you will have many considerations and concerns about her maturing body and her interactions with the world outside your home. School places her in the midst of her peers and provides her with greater opportunities to socialize and discover a self that is separate from the supports of family. Some youth with disabilities may isolate themselves out of self-consciousness, uncertainty, or the fear that no one could really care for them. it's even more important at this time to urge your child gently to seek companions and become involved in events, such as recreation groups, church or extracurricular activities, arts and crafts, or day camps. Adolescents need these social opportunities to explore and develop friendships, to experiment with a variety of social roles, and to experience control over their own lives. Interaction with others with disabilities can be particularly beneficial. Finding that there are others like herself with similar concerns, experiences, and feelings, can help to decrease the sense of isolation and "differentness" your daughter may feel. At the same time, these interactions provide her with an important support network.

The teenage years mark an adolescent's transition into adulthood physically as well as socially. The maturing of your daughter's body brings with it a new host of health concerns. She must learn how to care for and respect herself as a woman. This means your daughter will need:

• clear discussions about menstruation as a natural event of womanhood;
  
  
• information and training in how to care for herself in this regard; and
  
  
• regular visits to a gynecologist or family doctor.
  
  

The physical maturing of an adolescent's body is also accompanied by the emergence of sexuality. Many parents react to their adolescent's developing sexuality with alarm, and increase, rather than decrease, their vigilance. This is particularly true when the adolescent is female. Yet, when an adolescent female has a disability, the increased protectiveness of her parents may be accompanied by a tendency to treat her as if she were asexual, still a little girl. This is a common theme in disabled women's literature (Browne, Connors, & Stern, 1985), in which many women with disabilities speak candidly of the difficulties, confusions, and low self-esteem that result from being treated as a nonsexual being when one's internal feelings are quite the opposite.

Thus, parents of a young women with a disability should give serious thought to the messages they send their adolescent daughter about her sexuality. "Some people assume that if you are disabled, you can't have a social life or a sex life. This reflects one's own fears that unless one looks terrific physically, he or she will not be wanted. This is very potent stuff' (Weiner, 1986, p. 72).

Many parents find it difficult to talk frankly with their children about issues of sexuality. This reflects their concern that, should their child's sexuality be acknowledged and nourished, she will be subjected to rejection, abuse, unwanted pregnancy, or veneral disease (Rousso, 1981). However, all adolescents, disabled or otherwise, need reliable information about love, sex, conception, contraception, and veneral disease, in order to prepare for their lives as independent, responsible adults (Buscaglia, 1983). Here are some suggestions for dealing with this stressful time in your daughter's, and your, life.

• Realize that your daughter's physical development will be accompanied by the same sexual feelings and needs that all adolescents feel. You have no more control over the emergence of these feelings than she does.
  
  
• Don't restrict your daughter's social activities, in the hope that this will negate her sexuality. Restricting her in this way only deprives her of vital physical and mental stimulation.
  
  
• Be aware that, legally, you will not be your child's guardian forever. This is true no matter the severity of the disability. Although state laws vary, in most states a parent's guardianship, or legal authority over their child, ends when the child is 18.
  
  
• Sterilization is a difficult subject and a personal choice. Laws vary from state to state, so be aware of them. Most states have followed a recent trend prohibiting involuntary sterilization of individuals, meaning that your daughter must consent to it.
  
  
• Information and openness regarding sexuality are important for healthy development. Talk about, teach about, and counsel on issues of sexuality and the responsibilities that accompany sexuality. If this is difficult for you, find help; counselors, clergy, parent support groups, Planned Parenthood, and other adults with disabilities are good sources of information.
  
  
• Have open discussions about sexuality and disability with your daughter Acknowledge the social realities and the fears and uncertainties about their bodies and sexuality that many women with disabilities have. issues of sexuality and disability are complex. But also be reassuring that it is possible to find loving partners; many women with disabilities have successful, intimate relationships and children.
  
  
• Expose your daughter to positive role models of women with disabilities. Expose her to those who have mature, loving relationships, and family lives. Discuss what is involved in building such relationships. Expose her to women who live alone and who are successful, independent, and self-sufficient.
  
  

Yes, it's scary to admit that your daughter has sexuality. Frankly, it is difficult for most parents to accept and deal with this in all children, whether or not they have a disability. But "...remember that the disabled have the same needs that you have, to love and be loved, to learn, to share, to grow and to experience, in the same world you live in..." (Buscaglia, 1983, p. 18).

The Importance of Role Models

When Harilyn Rousso, who has cerebral palsy, was growing up, she had virtually no contact with other disabled people.

• I attended a regular school, so l just didn't know anyone else who was disabled... it never occurred to me that there could be very interesting smart, attractive, witty, and successful disabled people. (Brozan, 1984, p. C1)

Then, when Harilyn Rousso was 22 years old, she met a female economist who also had cerebral palsy. "That association had a profound effect on me,', she said. "I saw that she could make it in a man's field. But I was even more impressed that she was married... That woman made me challenge my assumptions about myself' (Brozan, 1984, p. C1, C11).

What happened to Harilyn Rousso illustrates how important it is that our children with disabilities are exposed to positive role models: others with disabilities who have successfully challenged the stereotypes of disability and their own limitations. Role models can be actual people: teachers, family members, workers in the community. Or they can be images that appear in books, posters, games, and the media. Seeing adults functioning in a wide variety of roles lets all children, and particularly those with disabilities, know that it is possible to grow up, work, love, parent, and lead independent lives.

Families and professionals learn just as much from being around people with disabilities. Mike, whose daughter was deaf, was very protective and openly stated that he did not believe his daughter would ever be on her own. Luckily for his daughter, a woman who is deaf was hired to work in his office. Mike saw how competent and self-sufficient she was. This experience completely altered his expectations for his daughter. He is now his daughter's greatest advocate for her independence and self-sufficiency.

Until recently, there has been an almost total absence of positive role models for girls and women with disabilities. This has had a profound effect on their self-image and sense of future. As one woman who is deaf states, "l used to believe that when I graduated I'd die or live with my family forever. That was because I'd never met a deaf woman" (O'Toole, 1979). Luckily, due to the pioneering efforts of women such as Harilyn Rousso, there are many resources currently emerging on video, in print, and in the form of organizations, that offer girls and women with disabilities the opportunity to learn what others like themselves have experienced and achieved.

As a parent, you can build your daughter's self-esteem and sense of her own possibilities by exposing her to positive role models of women with disabilities. Here are some suggestions for action

• From early childhood onward, seek out women with disabilities in your community who are working, raising families, and doing all the things that women do. These women are no longer invisible. Invite them to your child's school, or arrange for your daughter to meet with these women and talk. At the very least, point them out to your daughter.
  
  
• Acquaint your child with the world of work. When friends visit, tell your daughter what type of job he or she has. Ask your daughter if she would like to ask your friend about what the job entails. Do this in a way that conveys that many career paths are open to her.
  
  
• Be sure that the school or program your daughter attends has a good selection of learning materials that represent people with disabilities in positive ways. Check to see that they are not presented in stereotypical female and male roles. Also make sure that they represent diverse racial and ethnic groups. Become active in helping your child's teacher locate resources. The latter is most important, for you can be a tremendous asset to your child's teacher in this area.
  
  
• Find the resources listed at the end of this NEWS DIGEST and share them with your daughter. These and other resources such as your local library, independent living centers, and disability rights organizations, will expose your daughter (and you, too!) to books, plays, films, and television programs that portray positive images of people with disabilities. They will also help your child explore her options for education, independence, sexuality, work, and family life by providing role models of other women with disabilities who have successfully addressed these issues in their own lives.