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

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In my childhood I wanted to grow up to be able-bodied. I would be cured and never have polio again. Or, I wanted to be a boy. My father paid my brother for his chores but not me, even though I was older, because, "you're a girl and you're supposed to do housework." Boys could grow up to be important, even if they were disabled. There was Franklin Roosevelt, Beethoven, Ironsides, and all those athletes making miraculous recoveries. But there was no one I could be, except maybe Helen Keller. (O'Toole 1979)

Why the Differences? A Look at Society

Being a female and having a disability both have ramifications for the individual. In our society and in our schools, each of these descriptions engenders preconceived notions, expectations, and stereotypes. In both instances, it is the negative stereotypes that hold girls back or unnecessarily channel them into certain types of programs and jobs.

Although much has been written about parenting children with disabilities, few studies mention the gender of the children and still fewer suggest that gender makes a difference (Fine & Asch, 1988). Yet we know from research that, from the earliest moments of life, parents and others react to and treat boys differently than girls. In a now classic study, groups of people observed the behavior of a 15-day old infant on videotape. One group was told the infant was a boy, the other that it was a girl. Observers described the "boy" as more active and outgoing, while the "girl" was described as passive, crying, and in need of help (Condry & Condry, 1978).

Typically, boys are encouraged to be sturdy, to dare, to go out and meet the world. They are expected to become self-supporting, in anticipation of the day when they will have to support a family. Girls, on the other hand, being perceived as more passive, are sheltered. As the future "nurturers" of society, they are rewarded for their sensitivity to the needs of others and their ability to cooperate rather than aggressively pursue their own interests.

Differences in formal schooling emerge from how society views differences between males and females. For example, for the past century educators have assumed that boys learn to read more slowly than girls and are more prone to having reading disabilities such as dyslexia. In a recent Newsweek article (May 28, 1990), author Laura Shapiro reports that, in order to remedy these deficits, the schools employ a number of remedial reading teachers whose classes are filled primarily with boys. In contrast, girls have usually fallen behind in math by the time they reach high school. Yet, significantly fewer remedial math teachers are employed to help the girls during their elementary and junior high years when the problems are first identified. "Girls are supposed to be less good at math, so that difference is incorporated into the way we live" (p. 57). in an interesting counterpoint to this educational inequity, the findings of three recent studies refute the long-standing notion that boys are more prone to have dyslexia (Kolata, 1990). in one of the studies, conducted by Yale University, more than four times as many second-grade boys as girls were diagnosed by the school system as being dyslexic, and more than twice as many third-grade boys as girls. The Yale University researchers, testing the same children independently, found that equal numbers of boys and girls had reading difficulties. Dr. Sally Shaywitz, the co-director of the Center for the Study of Learning and Attention Disorders at Yale, says, "Girls, who really need help, are failing to be noticed" (Kolata, 1990, p. B6).

How do stereotypes of male and female behavior and potential affect children with disabilities? To begin with, many adults feel that children with disabilities need more help. Boys with disabilities can often escape the disability stereotype of helplessness or dependence by aspiring to such traditional male characteristics as competence, autonomy, and work. Girls with disabilities, however, confront two stereotypes: the "passive, dependent" female and the "helpless and dependent" person with a disability. As a result, they often get a double dose of assistance that can lead to a kind of a dependence called learned helplessness (Lang, 1982).

There is no doubting that society bombards us, via television and magazines, with images of the "ideal" female. Probably the ideal most damaging psychologically to many people with disabilities is this society's emphasis on physical beauty or attractiveness. While thousands of dollars are spent on cosmetics, physical fitness, clothes and hair-stylists, most of us fall far short of the ideal. Yet, we all strive for it. However, the gap between the ideal and reality varies from person to person, and many women with disabilities are affected more negatively.

Images showing motherhood and homemaking are also very powerful, and it is normal for parents and their daughter with a disability to identify with these roles. These are certainly very important roles in our society. Yet, young women with disabilities are less likely than their nondisabled peers to take on the traditional role of wife (Bowe, 1983) and even less likely to have the role of mother. When young girls and women are not encouraged to be independent and achieve some level of economic sufficiency, and believe or know that the options of wife and mother are closed to them, they are denied a meaningful role in adult life, a situation that results in rolelessness (Fine & Asch, 1988). The lack of having a part to play in life produces low self-esteem and a lack of confidence in one's self and one's activities and ideas. This can and does cause further dependence for the roleless person, most often on the parents and then on whomever later assumes the role of caretaker.

Today, in our society, single women who live alone and work are accorded more freedoms and respect than ever before. This is not am uncommon situation for a woman to be in, and many are successful in their work, self-sufficient, and prefer their independence. A woman in our society no longer has to derive her status from her husband. This is an important concept for a young woman with disabilities and her family to understand; women with disabilities who work and do not marry can find peers, both disabled and nondisabled, in similar situations. For those who choose otherwise, there are growing numbers of women with disabilities successfully married and with children who can serve as role models. What is important to understand here is that women with disabilities have the same options and choices for a lifestyle, and to be happy in that life style, as do women without disabilities.

While the above is true, we still have stereotypes, and young women with disabilities who receive vocational guidance and training are not exempt from society's pervasive ideas of what a male and female can and should do. Kratovil and Bailey (1986) summarize a number of studies that found that women with a disability, some receiving vocational counseling, others participating in workstudy programs or receiving vocational rehabilitation training, tend to be given guidance or instruction that tracks them into jobs consistent with traditional sex-role stereotypes. Such jobs tend to be service-oriented, lower paying, lower skilled, and generally less interesting. Female special education students rarely have access to courses in business, for example, which could lead to higher paying jobs. On the other hand, males with disabilities are placed in programs that provide training in a specific trade and also have many more opportunities for actual job training experiences. Moreover, they are trained for higher paying jobs that offer chances for advancement.

Women who are not disabled intellectually also have a difficult time. There is still a tendency on the part of people who are uninformed about disabilities to see a person with a physical disability and immediately assume that he or she is also less cognitively capable. Much can be done to change this assumption, and other negative ones, through awareness training and the modeling of successful women with disabilities. Change begins, however, within the family and woman with a disability. Families need to believe that their daughter with a disability can achieve, and work to instill that belief in her during her earliest days.

Differences in vocational training, as well as the very low rate of females with disabilities who are in some type of post-secondary education program, clearly suggest gender bias and a lack of positive self-assertion on the part of the women with disabilities. Hasaziet. al. (1989), who point out that research with nondisabled youth also shows less positive employment outcomes for women, suggest that there are several factors involved, including discrimination in the work place. They also point to the tendency of women not to consider security and advancement aspirations and to have less self-confidence than males when it comes to seeking jobs.

"The severe disadvantage disabled women and girls suffer is revealed in the economic and social realities they ultimately face," state Kratovil and Bailey (1986). "After 12 years of public education, disabled women all too often find themselves ill-equipped to do anything but remain in the family home or be institutionalized" (p. 251). They conclude that "the plight of the disabled woman, striving to realize her maximum potential as a productive, self-sufficient individual, results in large part from a widespread attitude that although the disabled man must become self-supporting, the disabled woman will somehow be cared for and protected" (p. 252).

I never knew what would happen to me when l left school It scared me. I 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)

What Can a Parent Do? A Look Within

There is no single or simple reason why these gender differences exist in our society, Yet they do exist. "Parents may wonder if gender roles are immutable... But burgeoning research indicates otherwise. No matter how stubborn the stereotype, individuals can challenge it; and they will if they're encouraged to try. Fathers and mothers should be relieved to hear that they do make a difference" (Shapiro, 1990, p. 56).

The difference parents can make begins with examining their own values and attitudes regarding male and female roles, parents may consciously or unconsciously have different expectations for their daughter and may not encourage as much independence and achievement as they have for sons. There is some research evidence, for example, that parents of females with mental retardation are less likely to encourage and expect self-sufficiency and community living than parents of males with mental retardation (Burchard, Hasazi, Gordon, Rosen, & Dietzel, 1986). it can be assumed that this comes from their normal fears for their daughter's safety. There is no doubt that families have difficult decisions to make in this regard. They must decide their actions by considering the options and the consequences of dependency, and realize that parents will not always be around to protect and be social companions for their daughters with disabilities. Parents need only recall the statistics presented earlier to know that their lower expectations can inadvertently lead to the consequences of dependency, unemployment, and poverty.

Thus, it is imperative that parents of a daughter with a disability look within themselves and become aware of how gender bias enters into the decisions they make and allow others to make for their daughter. They cannot ignore the future or expect it to take care of itself. The responsibility for planning and preparing for their daughter's future as an independent and self-sufficient person is primarily theirs, while the ultimate decision of how she will live and where she will work is primarily hers.