U.S. Congress Holds Briefing on the Status of Girls and Young Women with Disabilities
By Ilene R. Zeitzer, Disability Policy Solutions (ilenezdc@aol.com)
Spurred by the Center for Women Policy Studies, members of the U.S. Congress held a briefing on September 19, 2002 on the educational needs of disabled girls and young women. The briefing focused on the current status and the research and programmatic efforts needed to address the issues faced by girls and young women with disabilities. In addition to the Center for Women Policy Studies (CWPS), the briefing was also hosted by the Congressional Caucus on Women's Issues and the Congressional Bipartisan Disabilities Caucus. The latter caucus is newly formed and is co-chaired by the Honorable Constance A. Morella (Republican, Maryland) and the Honorable James R. Langevin (Democrat, Rhode Island), who is a wheelchair user.
CWPS President, Leslie R. Wolfe, spoke briefly about the Center's interest and ongoing work in the issues confronting females with disabilities. The Center has already published several studies that have defined the issues, and has explored many of them in greater depth such as health care access, violence against disabled women and women with HIV/AIDS. Dr. Wolfe then introduced the presenters who were: Harilyn Rousso, a CWPS Board member and Director of Disabilities Unlimited Consulting; Corbett O'Toole, Director, Disabled Women's Alliance; and Ivonne Marcela Mosquera, a former student activist.
Research overview
Ms. Rousso began the briefing with an overview of the research on disabled girls and young women, especially as it relates to the educational system. She stated that in the United States, disabled girls and young women are a large, diverse group, encompassing every type of disability and constituting between 5 and 8 percent of all female youth. She further emphasized that their commonality is the experience of double discrimination based on gender and disability and often compounded by other types of discrimination such as those based on race, ethnicity, class and/or sexual orientation. Moreover, she pointed out that the research demonstrates that because disability is seen as such a significant explanatory factor, other characteristics such as gender, race, ethnicity and class are often overlooked. However, Ms. Rousso said it is clear from the research that gender does matter.
To prove the significance of gender within educational issues for youth with disabilities, Rousso examined several key indicators. First she looked at what happens to disabled youth after they leave school and immediately found cause for the claim that gender does make a difference. She cited a comprehensive review (2001) by Bonnie Doren and Michael Benz who looked at postsecondary employment outcomes for young women with disabilities using 34 studies over the period 1972-1998. Those researchers found that disabled women fared far worse than their disabled male counterparts or non-disabled female or male peers on every indicator including: employment rates; working full time; earnings levels and job status. Moreover the gender gaps on all indicators were statistically significant.
She then explored the reasons for the poor employment showing of disabled women and the role that gender plays in these factors. She found among other aspects that:
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Girls and young women with disabilities have more limited access to special education services and support than do young males. Currently 2/3 of all students receiving special education are males. She also cited research to indicate that in addition to biological differences that have long been thought to put male children and youth more at risk for learning and other disabilities, there are two other explanations - behavior and bias. The former often results in boys acting disruptively when frustrated whereas girls tend to turn inward and perhaps become depressed. Teacher bias is the third side of the gender gap triangle. Research has shown that teachers often are more concerned when male students do not perform than when girls are failing. Hence boys are more likely to be referred for help and girls must often be more significantly disabled in order to receive special education services.
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Girls and young women with disabilities are still substantially under-represented in the curricula and educational resources that help students see their lives in a wider context.
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The type of vocational training for young women with disabilities is often off the mark in that it reflects gender stereotypes. Rousso asserted that young women are less likely to receive occupationally specific training than young men, even though this type of training is more likely to lead to a job. In particular, she stressed that while disabled students of both genders have less access to math and science courses and experiences than non-disabled youth, disabled girls have even fewer opportunities than do disabled boys.
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Young women with disabilities drop out of school at about the same rate as disabled males but for different reasons. Males tend to drop out because of academic failure but females do so often because of early marriage and/or parenting responsibilities. Rousso says that adolescent parenthood is widespread among young women with disabilities and she cites lack of access to adequate sex education and reproductive health care as the reason.
In summary, she urged policy makers, providers, teachers, families and everyone involved to recognize that gender does matter and to craft programs and legislation that reflect not only disabled girls' and women's commonalities with disabled boys, but also their differences.
Perspective of a mother who is also a teacher and disabled
The briefing then shifted from a macro to a micro perspective with Corbett Joan O'Toole, a certified teacher, who presented a very personal description of life as a mother with a disability of a daughter who is disabled. She began by saying that their combination is demographically and statistically non-existent according to the U.S. Government. She said about the only way they are acknowledged is through national data on health where they are portrayed as a medical problem. Her presentation focused on the encouraging and challenging things that are happening at the elementary school level for girls with disabilities and specifically: (1) how gender equity projects impact girls with disabilities; (20 how special education interfaces with equity efforts; (3) role models for girls with disabilities; and (4) the impact of current educational structures on mothers.
O'Toole echoed many of Harilyn Rousso's points in discussing how gender equity projects impact on girls with disabilities. She noted that girls with disabilities point out "they are girls first." Hence, in recognition of the fact that they are less frequently represented in textbooks and in math and science materials, Congress passed the Women's Educational Equity Act (WEEA) in 1974. O'Toole said that WEEA grants occasionally have been awarded to examine the unique needs and circumstances of girls and young women with disabilities but that they are often the only efforts made by public schools to address these issues. Ironically, although the WEEA grants have been quite limited in this arena, nevertheless, they make WEEA the leader in funding programs that address the educational needs of girls with disabilities and whatever progress has been made can be attributed to their grants. O'Toole recommended that, instead of funding separate projects on disabled girls, a more comprehensive approach be used that asks grantees to demonstrate how they are specifically including students with disabilities in their projects. Similarly in discussing the equity challenges of special education, she suggested linking special education, disability equity, gender and racial equity programs together through encouraging cross diversity grants and trainings and requiring that materials be available in alternative formats.
With regard to the lack of adequate numbers of role models for girls with disabilities, O'Toole cited federal laws such as the Education for All Children Act (PL-94-142) and the recent reauthorization of the Individuals with Disabilities Education Act (IDEA) as both having specific language to encourage employment and promotion of individuals with disabilities. Yet, 28 years later, she finds little has been done to increase the hiring of people with disabilities in schools and most are not even aware of these provisions. She encouraged the government to require that curriculum materials include experiences and images of people with disabilities.
Finally, she discussed the issue of being a mother of a child with a disability and described a situation where parents, mostly mothers, take on the education of a child as a full-time job. In short, mothers of these children are more likely to be expected to provide all the transportation to social activities, meet more frequently with school personnel, and often to remain at school or social events to provide access for their child. She pointed out although many of these mothers are single parents and are likely to be living in poverty, most funding and policies presume that there are two parents, one of whom is providing financial support. She urged that more be done to provide programs targeted to parent training, special education and IDEA enforcement. In her view, mothers need to be trained to be effective and articulate case managers for their children. In addition, she pointed out that often these mothers are in low-income jobs that severely restrict their time availability. She noted that these children tend to have more medical appointments and require more parental involvement in their education, but currently there is no job protection for the mothers who must typically deal with these issues.
She concluded with a comment from her 3rd grader daughter who is angry that the playground at her school is not accessible to wheelchair users like her who would like to be able to play with the other kids and she hopes it will be better for the next generation of kids with disabilities.
Perspective of a former special education student
Ivonne Mosquera discussed her educational experiences as a proud Hispanic, blind young woman who was brought to the US from Venezuela by her Colombian parents at 13 months of age because of a diagnosis of retinoblastoma, a rare form of cancer. Her parents relocated in New York City where she had surgery and chemotherapy that cured the cancer but left her blind. She described her pre-school training at the New York Lighthouse for the Blind and the struggles of the family with the school system of New York City to ensure her inclusive education. For example, the system wanted to send her to a special school for the blind although she had already had all that training. The advocacy of her parents eventually prevailed and she attended Public School No. 6 - one of the top public schools in New York City --, the Lab School, (a public school for gifted students) and Trinity School (a private school). She then went on to Stanford University where she obtained a BS in mathematics. Her extra-curricular activities are equally impressive and include theatre work, participating in the Experiment in International Living in Normandy, France, dancing with a dance company, an internship with the National Science Foundation in Washington, DC, working for a summer in Costa Rica for Mobility International USA and climbing Mt. Kilimanjaro.
Although she related her experiences with the educational system with good humor, it was also clear that her success was very much attributable to her parents' dedicated advocacy and her own strong determination and self-confidence. She concluded that what disabled women need to succeed is:
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access to information - what educational opportunities and options are available?;
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information on what services the child is entitled to receive - what is the law?
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Access to adaptive technology - what is available, is there financial assistance to purchase equipment and what equipment is needed for home and school?
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Role models - in the curriculum and outside of school
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Teachers who know -- the law, services, programs and organizations to provide services, handouts, materials in accessible format and extra-curricular activities that are accessible to students with disabilities.
In conclusion, there is still a great deal to be done to help level the playing field for students with disabilities, especially girls and young women, and the Center for Women Policy Studies will continue to publicize the shortcomings and advocate for improvements. The audience heard about a new bill, called the Instructional Materials Accessibility Act, sponsored by Congressman Thomas Petri (R. Wisconsin), Chair of the House Education and the Workforce Committee that would help in that regard. It would require all textbooks to be in accessible format at the beginning of the school year.
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