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

Number 14
October, 1990

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This issue of NEWS DIGEST focuses on some of the realities parents must face in helping their daughters with disabilities to become more self-reliant and, ultimately, independent. You may ask, "Why a special issue on gender? Are the issues really that different for boys and girls?" The answer is: Yes. While the issues of independence and self-determination obviously apply to sons with disabilities as well as to daughters, the degree to which daughters with a disability are encouraged to strive for an independent life may be critically less. The psychological and feminist literature inform us that these are issues of society in general, with important differences existing in how males and females are socialized, counseled, and educated. These differences have far-reaching implications for how males and females view themselves and what they achieve.

Statistics tell us that females with disabilities are achieving less in terms of employment and socialization into the mainstream of life than men with disabilities, with the vast majority of women living in dependent and comparatively impoverished circumstances. Yet, there are many girls and women with disabilities who flourish and succeed. What are the reasons for their success, when others do not succeed? How can parents and professionals foster self-confidence and aspirations to employment and independence in young women with disabilities?

Within this NEWS DIGEST you are given a general overview of gender issues and some suggestions for promoting self-sufficiency and independence. But most of all, this NEWS DIGEST is intended to increase awareness. The issue concludes with a bibliography of readings, organizations, and other sources of further information.

"I try not to think about Sarah having an apartment, being independent."

"My daughter is real slow, you know, and she wants to get a job. I know I should encourage her, but I can't sleep nights worrying about what might happen. Someone could easily take advantage of her. What if she were attacked, or worse, raped ? There is so much bad out there. I pray that I will have the courage to do what is best for her."

"From the things I've read and the people with disabilities I've talked to, the one thing that stands out is that their parents or teachers expected them to succeed and did not treat them as if they had a disability. I try to do this for my daughter."

"The idea of Marsha riding the bus scares me to death. She's so small, what if she gets hurt?"

"Look, I know what I should do, but the bottom line is that this is my daughter. I don't think I can take the pain of always worrying about her. People are not always kind; she could be rejected, laughed at, or even hurt. She's my responsibility, and I don't take that lightly. I love her too much to ever have her hurt."

"My daughter is deaf I don't want her riding the METRO alone. What if she needed help? People wouldn't be able to understand her. They might not even understand that her cry for help was a cry for help!"

The above are comments by parents of daughters with disabilities. They reflect the very real concerns of parents and the conflicts that all parents have between wanting their children to be independent and also wanting to shield them from possible pain. The urge to protect children is natural and normal. But protection can sometimes work against promoting maturity and self-reliance. All parents, whether their child has a disability or not, need to search for, and hopefully find, that area between too much and too little protection.

We are committed to helping all persons with disabilities eventually live as independently and with as much self-reliance as possible, but we know that independence, particularly for girls, is a troublesome issue. It does not happen overnight. Fostering a person's ability and desire to live independently most begin early and be a part of the daily consciousness of significant caregivers. Therefore, it must begin at home and continue to be fostered at school and by society in general. Becoming aware of the issues related to self-determination, which incorporates independence and self-sufficiency, and the factors that contribute to it, is an essential first step for families and professionals to take.

Why is Independence So Important?

Our society was founded upon a belief in personal freedom, meaning that all of us have the right to make our own life choices about education, work, religion, relationships, and so forth. We also believe that a person should be given opportunities to succeed to the extent of his or her abilities and desires. People with disabilities have been long denied the rights of personal freedom and opportunity. Today, through research, education, and exposure to successful people with disabilities, we, as a nation, are realizing that individuals with disabilities have the same rights as the rest of society. They must be allowed to make personal choices. And with opportunities, the proper training and education, and guidance from families and service providers, we are seeing people with disabilities participating in the American dream of independence, personal fulfillment, and achievement. No longer do we hold up the lone achiever, the exceptions; we are beginning to expect it of all people with disabilities. "Remember that persons with disabilities are persons first and disabled individuals secondly. These persons have the same right to self-actualization as any others: at their own rate, in their own way, and by means of their own tools. Only they can suffer their nonbeing or find their 'selves.'" (Buscaglia, 1983, p. 18)

For boys and girls alike, developing independence is a natural rite of passage from youth to adulthood (Corbett, Froschl, Bregante,& Levy,1983). Being independent creates positive self-esteem. But independence does not develop in a vacuum. People cannot make reasonable decisions without experience in decision-making, without testing themselves in the world, trying and failing, and trying and succeeding. People do not work if they have had no job training, or become economically self-sufficient if they have been channeled into a job which only minimally uses their capabilities and strengths. People may not aspire without knowing that others with disabilities like their own have aspired and achieved. And perhaps most importantly, individuals with a disability cannot achieve independence if the expectation is that they won't or can't.

Independence, however, does not necessarily mean that the individual must perform all tasks alone, without help from another human being. Few of us, in fact, could be called independent according to such a standard. For example, achieving independence may require transportation or basic living support, or other types of assistance and accommodation (Litvak, Zukas, & Heumann, 1987). With proper assistance, however, many people with disabilities are quite capable of supporting themselves, living outside the family home, developing enriching relationships, and becoming proud, productive contributors to society (Rousso,1988). Others might not achieve total independence, but can look after and care for themselves to an extent unthought of ten years ago.

The process of developing a level of independence, the ability to make decisions and manage one's self is life-long, with the foundations laid long before a person reaches adulthood. Thus, as concluded by Buscaglia (1983), the family's role becomes one of encouraging emerging individuality for special children, permitting them to make their own choices, and to exert and express themselves. In order to do this, the family will have to rid themselves of any preconceived notions of the child's dependence, limited abilities, and inferior family status and allow the child to reveal his or her own needs and abilities (p.117).

The major issues addressed in this NEWS DIGEST are those of boys as well as girls, or men as well as women; however, we don't seem to be as successful in fostering independence and self-reliance in women as in men. Likewise, all the suggestions given would apply to boys as well as girls. For whatever reasons, however, we do not seem to be applying them to girls as frequently as to boys. With opportunities for and protections of the rights of all individuals with disabilities, we must ensure that these rights are extended to all women with disabilities to the same degree as to men. The issue of women and girls with disabilities and their right to self-determination is a complex one. The following statistics under-score the need for families and schools to work together to promote positive outcomes for this nation's women with disabilities.

Some Recent Research on Women and Men With Disabilities

The National Longitudinal Transition Study (Wagner & Shaver, 1989) conducted by SRI international examined several aspects of the employment experiences of young people with disabilities and found that males with disabilities out of school for two years were most likely to work as semiskilled or unskilled laborers (26%) or in service occupations (27%). Women were most commonly employed in service (58%) or clerical jobs (21%). in addition, it was found that being male, older, white, and from a higher socioeconomic background were factors linked to a higher probability of competitive employment. Youth with higher functional abilities, those who had graduated from high school, and those who had participated in occupationally-specific vocational education and in work experience programs in high school also were significantly more likely than others to be employed after high school.

Hazasi and her colleagues (Hazasi, Johnson, Hazasi, Gordon, & Hull, 1989) have summarized some of the major studies that have followed-up special education students after they have left public school. Overall, these studies have found that, in the first year after school, males are more likely than females to be employed, to be employed full-time, and to remain employed full-time during the next two or three years, when the follow-up stopped. In addition, all of the women students with disabilities were employed in unskilled jobs. These outcomes were the same across different studies, in different areas, with different employment opportunities.

Based on labor force statistics for the 1988 work year, 23% of the working age men with a disability had full-time jobs compared to 13% of working age women with a disability. The income of individuals with disabilities who worked, either full or part time, in the year 1987, showed similar disparities for men and women. The mean income for men with disabilities who worked in 1987 was $12,377, compared with $6,355 for women with disabilities (U.S. Bureau of the Census, 1989).

"Not working is perhaps the truest definition of what it means to be disabled," report Harris and Associates (1986, p. 4), following their survey of disabled Americans. Over 64% of all men with disabilities were totally out of the labor force in 1988; this compares to almost 73% of all women with disabilities (U.S. Bureau of the Census, 1989). Harris and Associates (1986) also report that the majority of those with disabilities and out of the labor force depend on either government benefits or insurance payments for their support, and 40% receive no benefits of any kind. The latter are mostly women who must depend on someone else for their support. Since a desirable outcome of the education experience is paid employment, these and other statistics on the employment of those with disabilities are very troubling.

NEWS DIGEST is published three times a year. In addition, NICHCY disseminates other materials, and can respond to individual inquiries. Single copies of NICHCY materials and information services are provided either free of charge or at minimal cost. For further information and assistance, or to receive a NICHCY Publications List, contact NI CHCY, P.O. Box 1492, Washington, DC 20013, or call 1-800-695-0285 (Toll-free, Voice/TT) or (202) 884-8200 (Voice/TT).

NICHCY thanks our Project Officer, Sara Conlon, at the Office of Special Education Programs, U.S. Department of Education, for her time in reading and reviewing this document. We also thank Dr. Margaret McLaughlin, of the Institute for the Study of Exceptional Children and Youth, University of Maryland, and Judy Barokas at the Council for Exceptional Children, for their expenditure of time and for providing their expertise in reviewing this manuscript. Finally, we thank Educational Equity Concepts, Inc., for their contributions to the material in this issue.

This document was prepared for publication on the Macintosh/SE and LaserWriter II NT through the generosity of Apple Computer, Inc.

• Project Director.................................Carol H. Valdivieso, Ph. D.
• Deputy Director..............................................Suzanne Ripley
• Editor..........................................................Richard Home
• Principle Authors......Merle Froschl, Ellen Rubin, and Barbara Sprung
• Contributing Authors.............Lisa Kupper and Margaret McLaughlin

This document was originally developed by Interstate Research Associates, Inc., pursuant to Cooperative Agreement #G0087C3051 with the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

The reprinting of this document was made possible through Cooperative Agreement #H030A30003 between the Academy for Educational Development and the Office of Special Education Programs, U.S. Department of Education.

Your comments and suggestions for NEWS DIGEST are welcomed. Please share your ideas and feedback with our staff by writing to the Editor.