Living Out Loud: Building Resiliency in Adolescent Girls with Disabilities
By Nancy Ferreyra, former Executive Director, Progressive Research and Training for Action (nanf@pacbell.net)
"I am not so different. I actually see my disability as a gift now, a different way of seeing things. I no longer limit myself to one way of doing things and therefore have created some good problem-solving skills. I am luckier than others because I can see many ways of doing things."
-- 19-year-old graduate of the Living Out Loud Program
Project Overview
The Living Out Loud program was a five-year demonstration project serving female adolescents aged 14-21 with learning disabilities and/or physical disabilities. Located in the San Francisco Bay Area, the project operated from October 1994 through December 1999. Funded by the federal Center for Substance Abuse Prevention (CSAP), the goal of the project was to build resiliency in disabled girls so they would not use tobacco, alcohol, or other drugs. The project sought to lessen the risk factors for substance abuse while building on the strengths and capacities of the participants to enable them to become strong, successful young women.
The basic objectives of the project were: 1) to design a substance abuse prevention program that would meet the specific needs of young women with learning and/or physical disabilities; and 2) to gather baseline data about the attitudes and behaviors of girls with learning and/or physical disabilities to begin to fill the information gap about this group of girls.
The core of the prevention program was a weekly peer group (separate) meeting of learning disabled girls and physically disabled girls. Other program components were a life skills curriculum, facilitated groups, one-on-one counseling, the provision of adult disabled women as role models, integration into mainstream community events and programming, and the provision of opportunities not typically afforded to disabled girls.
Living Out Loud was conceptualized and implemented by Progressive Research and Training for Action (PRTA), a non-profit agency located in the San Francisco bay area. PRTA was founded in 1990 to "promote community-driven approaches" with the ultimate goal of empowering individuals who have been stigmatized and oppressed so they may participate fully in society. "Community-driven" work means that our projects are staffed by the members of the communities whose needs they address. PRTA's specialty is examining and addressing the needs of populations who are underserved in the mainstream social and human service delivery system.
Program Philosophy
Adolescence is a critical time in any girl's life. Unlike boys, whose self esteem typically decreases during this phase of their life and then climbs during adulthood, girls' self esteem drops and continues to decline for the rest of their lives (American Association of University Women, 1990). Hence, at around age eleven, girls "lose their voices," metaphorically speaking. In response to this declining self-image, research indicates that non-disabled girls use alcohol, tobacco and other drugs to cope with depression and stress. Adolescent girls with disabilities face even greater challenges to maintaining their sense of self than do their non-disabled peers because of social oppression and exclusion from social activities; therefore they are at considerable risk for negative behaviors, including substance abuse.
The Living Out Loud program was developed to enable girls with disabilities to find their voice and fulfill their potential, hence the program title. It was founded on the tenet that the most significant barriers that girls with disabilities face are societal barriers. Therefore, to become successful women, these girls must have a clear understanding of the context that surrounds their position in society as females and as females with disabilities. The program's philosophy draws upon the social activism approaches of feminism and the independent living model. Ultimately, the project was a peer advocacy model, enabling girls to recognize and address their own needs and advocate on their own behalf.
Conceptualizing the Program and Identifying Risk Factors Committed to developing a program grounded in research, we conducted a literature search on substance abuse prevention for adolescent girls with disabilities, but found no data. As an alternative, we broke the topic into three related parts. We first examined key research on substance abuse among girls and, next, on substance abuse among youth with disabilities. Third, we reviewed what was known about the status and unique obstacles facing girls with disabilities, even if this information was not specifically related to substance abuse. In addition, we conducted a series of focus groups with women with diverse disabilities of various ages and ethnicities, adolescent girls with physical and/or learning disabilities, educators, and experts who had developed model programs for youth with disabilities. These focus groups provided further information on factors contributing to substance abuse, barriers to developing strong self-esteem and strategies to develop resilience in girls and young women with disabilities. The data gathered from these varied sources were used to craft the various components of the program.
Risk factors for substance abuse among female adolescents The most widely documented risk for substance abuse among adolescent girls is poor body image (Bodinger-de Uriarte & Austin, 1991) in association with the desire to "fit in" with peers and be accepted by boys. Hence, the curriculum would need to address body image and the specific experiences that girls with disabilities have in relation to their bodies and appearance. Additionally, there was evidence of a high rate of depression among adolescent females; depression is a direct correlate with substance abuse. Thus, staff would need to have the skills to recognize and address issues of depression and be knowledgeable about community resources that provide counseling services.
Risk factors for substance abuse among youth with disabilities A common perception is that just as youths with disabilities are isolated from mainstream activities, they are also sheltered from exposure to alcohol and other drugs. However, according to at least one study (Moore, 1992), disabled youths initiate drug use at the same time as non-disabled youths. This suggested that although Living Out Loud was intended to be a prevention program, it was likely that some of the participants might already be experimenting with alcohol or other drugs.
Another risk factor for youth with disabilities identified in the literature was "enabling" by family members and society in general (Resource Center on Substance Abuse and Disability, 1992). In their desire to have their disabled children be "normal," there is a tendency to accept behaviors (such as drinking alcohol) that are viewed as a typical adolescent rite of passage into adulthood. Similarly, family members and other adults in a youth's life may reason that the young person has no other options for recreation, and therefore ignore the negative impacts. To address this issue, the program would need to educate parents, family members and teachers about substance abuse. »Obstacles for girls with disabilities Studies on the situation of girls with disabilities document a range of obstacles that these girls faced. These included high rates of physical and sexual abuse and neglect (Cross, Kaye & Ratnofsky, 1993) and high rates of teen pregnancy and poor academic achievement (Wagner, 1992). This suggested the importance of addressing violence, abuse and sexuality in the curriculum. Additionally, the fact that boys outnumber girls three to one in special education (US Department of Education, 1998) suggested to us that the needs of disabled girls might be overshadowed by those of the boys. As such, we felt that girls would benefit from focused, personal attention.
No role models
More than any other type of female, girls with disabilities are in desperate need of role models. For girls belonging to any other underserved population, they have built-in role models in their family unit. Typically, a girl with a disability will be the only person in her family with that disability. Most disabled girls do not have parents or adult family members who can demonstrate to them how to deal with the obstacles that they face in having a disability. For this reason, the lack of role models has been cited extensively in the literature as a hindrance to girls with disabilities in realizing their potential (O'Toole, 1979; Fine & Asch, 1988).
Identifying participants
The original program design was to convene groups at school-based sites, serving all disabled girls enrolled in the school, regardless of their specific disability. Groups would have included girls with mental retardation, visual impairments, physical disabilities, learning disabilities, and girls who were Deaf or hard of hearing. But upon further deliberation, it was apparent that this design was weak for two reasons.
First, one of the most critical aspects to the program was cultivating community among the participants. This was to be accomplished by the girls sharing common experiences and supporting each other's struggles. If the girls had different disabilities, they may share some experiences, but their various levels of emotional and cognitive development might impede any meaningful communication. In the end, to enable groups to become cohesive, it was decided that the participants needed to have the same disability.
Second, it was important that the research findings be as significant as possible. Because this population of girls had never been studied, the project had a strong commitment to produce results that would make meaningful contributions to the substance abuse field, the disability field and the gender studies community. The larger and more specific the sample, the more meaningful the research findings.
Therefore, we decided to narrow the focus to include only girls with learning disabilities and physically disabled girls, and to have a separate group for each. We opted to include girls with learning disabilities because they represent the largest percentage of the population of students receiving special education services. We elected to serve girls with physical disabilities, a relatively low incidence group, because of staff interest. If a participant had both a physical and a learning disability, she was given the choice which group she wanted to participate in.
Participants with Physical Disabilities. Physical disability was defined broadly to encompass any type of disabling condition that impaired the student's capacity to perform an activity of daily living. The majority of participants had cerebral palsy, while others had spina bifida or spinal cord injuries. One participant was an amputee and several students had speech disabilities and used augmentative communication devices, like speech boards. Almost half of the physically disabled girls also had learning disabilities. The majority of the physically disabled participants were White (52%), then African American (24%), with a few Asian Americans and Latinas. The physically disabled girls lived in various, diverse communities in the San Francisco bay area, from the affluent Marin County to the poorer neighborhoods of east Oakland to suburbs in Contra Costa County.
Participants with physical disabilities were recruited through high school special education departments, medical therapy units, disability service agencies, medical rehabilitation clinics, and by word of mouth.
Participants with Learning Disabilities. Learning disability was defined as a documented difference in learning style, coupled with an average or above average I.Q. Girls involved in the program had dyscalculia, dyslexia, dysgraphia, dysphasia, auditory processing learning disability, attention deficit disorder, social perceptual learning disability and perceptual motor disability. Only one of the girls who participated in the group of learning disabled girls also had a physical disability. A majority of the learning disabled girls were African American (47%) and Latina (31%), with a few White, Asian Americans and Native Americans. Learning disabled participants lived in Berkeley or Oakland, mostly in economically challenged neighborhoods.
Participants with learning disabilities were recruited through the special education departments of the high schools where the group meetings were held. Sometimes recruitment was a challenge because the school would use a different definition of "learning disability" than Living Out Loud and, for example, would refer girls with primarily mental retardation. Another challenge was whether or not to serve girls who were not officially diagnosed as having a learning disability, but who school personnel viewed as "at risk" and hence likely to benefit from our program. Ultimately, the program did not serve these girls.
Recruiting staff
All project staff were women with disabilities except for the Project Assistant. The program recruited counselors that would mirror the life experiences of the participants. Preference was given to women who 1) had a personal experience growing up as a disabled girl and 2) had a broader analysis of the societal position of females with disabilities. Program staff also had experience working with youth, had some knowledge of the school system and local community resources and had experience facilitating groups. Counselors were of various ethnic backgrounds to match the demographics of the participants.
Weekly Group Meetings
The core program revolved around weekly, facilitated group meetings offered during the school year. Living Out Loud was a two-year program. Overall, about half of the participants were involved for two years, the rest one year or less.
The group meetings were an essential aspect of the program, for they provided an opportunity for the girls to gather in a space of their own. The learning disabled girls felt free to speak what was on their minds without worrying whether or not they would be judged for getting the words right. For the physically disabled girls, it was the first time they'd ever been together without a non-disabled adult present.
In the groups the girls were able to discuss what was going on with them at the time. Although the counselors delivered the curriculum, they were always able to be flexible and respond to the timely needs of the participants. For instance, there was a death at one of the schools, which brought up a lot of feelings for the girls. The counselor put aside the scheduled topic and led a discussion on death and loss.
The groups for the learning disabled girls were convened at the school sites of the participants. The group meetings were held at different times based on the arrangements with the particular school. The length of time ranged from less than one hour to two hours. Some schools allowed the girls to participate in the group as a class and receive credit, while other schools let the girls out of their regular classes to participate.
Because the incidence of physical disability is so low, it was impossible to gather enough girls at one school for a group. Therefore, the groups for the physically disabled girls were held at the Center for Independent Living in Berkeley on Saturdays from 1 to 4 pm. The first year the group was convened every Saturday. In the two subsequent years, the group was held three Saturdays out of the month. The participants came from different parts of the San Francisco bay area. One of the findings of our focus and pilots groups was that transportation could present a barrier to girls participating, so we purchased a lift-equipped van and transported the girls to and from the group.
Life Skills Curriculum Drawing upon research and the developers' own expertise in the fields of women's and girls' issues, disability rights/culture and substance abuse, the final curriculum included the following core components: 1) disability identity, culture, community and diversity; 2) disability rights/civil rights issues, including accommodations; 3) body image and changes; 4) sexual harassment, assault and other forms of violence; 5) suicide; 6) alcohol, tobacco and other drug abuse and prevention; 7) self defense; 8) transition, postsecondary education and vocation; 8) parenting; 9) recreational options; 10) personal assistant management; 11) finances; and 12) nutrition and diet, including eating disorders.
Although these components were maintained throughout the life of the program, counselors had the flexibility to spend more time on some, less time on others. For instance, the group for girls with physical disabilities spent more time on civil rights under the Americans with Disabilities Act (ADA) while the group for girls with learning disabilities devoted more time to the issue of utilizing accommodations in the classroom. Some exercises in the curriculum were the same for both groups, some differed. For instance, aspects of nutrition were different for the two sets of girls. While the physically disabled girls had to address the logistics of cooking, the learning disabled girls needed to focus on how to read and follow a recipe.
Once the program was underway, various components were added that reflected other needs and interests of the girls.
Media Literacy/Videography. We received a supplement from CSAP to develop a program component on media literacy. In this component, the girls critiqued magazines and other media, and used media images to explore issues of body image and physical appearance. We used media literacy as a learning tool and had the girls critically examine various media images as we taught them about alcohol and tobacco. As a part of the media supplement, we also offered videography training. The learning disabled participants shot, edited and produced public service announcements on the prevention of tobacco and HIV. The physically disabled girls shot, edited and produced a public service announcement on tobacco prevention as well as an educational video on the lack of physical access in the community and their school.
Entrepreneurship and Computer Training. We collaborated with Global Education Partnership (GEP), a local youth service agency, to provide entrepreneurship and computer training. The girls developed business skills and developed a plan for their very own small business, the Ghetto Café where fellow students could display their artwork and consume healthy snacks. In GEP they also made and marketed jewelry, and learned about the global marketplace. GEP has satellite offices in Kenya and Guatemala, and the girls established e-mail contact with youth in those countries. The entrepreneurship and computer training was six weeks over the third summer.
Disability Awareness and Accommodations. In addition, as we got to know the girls, we realized that certain assumptions we had made about their lives were erroneous, requiring modifications in the curriculum. For example, we assumed that participants would have some knowledge about their disability. This assumption turned out to be true for the girls with physical disabilities. However, over half the girls with learning disabilities did not know the nature of their specific learning disability or its effects on their unique learning needs. A handful of these girls did not know they had a disability, they thought they were in special education because they were "slow." The curriculum was revised to include basic information on various learning disabilities and how to accommodate them. Girls received calculators, hand-held computerized spellers and tape recorders. They were informed that they had a right to use these tools in class and to obtain other accommodations such as extended time for tests. They learned that accommodations were their civil rights.
Staff also discovered that although we had designed a curriculum full of information on nutrition, sexuality, reproductive health, vocational options, negotiating relationships, what kept the girls coming back was not so much the educational component, but the opportunities to connect with peers and engage in fun activities. Participants were hungry for opportunities that had been afforded their non-disabled peers. Some examples of the activities the Living Out Loud program offered are:
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Self-defense for both groups of girls
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Dance improvisation session for the physically disabled girls
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Arts and crafts, including media collages
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Creating a menu, purchasing the food and making the dish
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A graduation party at the end of each school year and at the end of the GEP program for participants and families.
One-On-One Counseling
The purpose of one-on-one counseling was to give the girls an opportunity to address specific, sometimes personal problems in a private setting. Additionally, we wanted to provide them with a sense of being cared about. Counselors met with learning disabled participants at the school sites. The counselors had a room on campus where they were available during school hours for girls to drop by during their breaks or free periods for one-on-one counseling. Counselors met with the physically disabled girls on the phone, at their homes, on the long van rides on Saturdays or via the Internet.
Through counseling, staff was able to assist girls with issues that had not been anticipated at the start of the program. For example, while we recognized that the girls came from communities with ongoing economic, social and other challenges, we had not anticipated the extent of the need by some girls for help with basic living support, including food, clothing and shelter, requiring an extensive outlay of staff time. Also, we had not realized that some of the girls' Individualized Education Plans (I.E.P.'s) would be outdated. The counselors spent considerable time advocating for IEP updates and attending IEP meetings. Some of the learning disabled girls utilized their one-on-one time for tutoring and assistance in learning how to use their spellers and tape recorders.
Field Trips
Field trips fostered independence, provided information on educational and career options, and were simply fun and recreational.
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Outings to the movies and Great America shopping mall
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Christmas shopping for the physically disabled girls-for some, the first time they'd been out without parents
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Culinary Academy
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Local television station
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Tour of universities
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Orientation day at junior colleges
For some of the girls who had not intended to go to college, the field trips to college campuses, combined with the rest of the program, helped them reconsider, apply and enroll.
As one participant stated:
"Living Out Loud has taught me how to overcome some of the fear of going to college and becoming a professional. If I wasn't a participant in Living Out Loud, I would be home thinking I could not achieve anything and might have converted myself into a mother."
Role Models
A fundamental element that was woven throughout the entire program was access to role models. All project staff except for the Project Assistant were women with learning or physical disabilities. Both of the local evaluators were women; one used a wheelchair. To demonstrate the breadth of the disability community and culture, guest speakers were women with various disabilities. Additionally, the program showed various films and videos that profiled women and girls with disabilities.
For the first three years of the project, we struggled with the concept of a formalized mentor component. Each summer we attended meetings convened by CSAP for all of its grantees. We went to every workshop on mentoring and listened to how other programs utilized role models. Not many had instituted a program where participants were formally paired up with adults. Liability and logistics were the main deterrents. Eventually, we were satisfied that by giving the girls an opportunity to engage with adult women with disabilities, we were meeting our overall goal.
Evaluation Method
An evaluation of the program was carried out by an independent research firm, employing both process and outcome methods. To measure the impact of the program on the individual participants, staff conducted pre and post surveys utilizing measures of self-esteem and alcohol, tobacco and illicit drug use patterns and behaviors. Also, a life skills survey was created to determine the level of information participants retained from the curriculum. In addition, entry and exit surveys were used to gather basic demographics on participants' family members and measure changes in expectations and academic and vocational plans.
To assess the impact of the program on participants with learning disabilities, a comparison group of learning disabled girls who did not receive program services was recruited. The comparison group, matched to the treatment group by age, ethnicity and disability, also completed measures of self-esteem and drug/alcohol use. Because not enough physically disabled girls could be identified for a comparison group, participants with physical disabilities were interviewed to gather more information on their experiences in the program. Evaluation staff worked with program staff to insure that all the instruments were formatted to be accessible to the girls. Instruments were read aloud in groups or one-on-one if needed.
Each summer the preliminary findings were analyzed and program staff was interviewed as part of the process evaluation. Continually, it appeared the evaluation results were not capturing the impact of the program. For example, staff interviews revealed that a number of the girls were not planning on attending college at the beginning of their senior year, but then went on to attend a local junior college. These data were not being recorded through the intake and exit surveys, so the surveys were revised to include items regarding post-secondary plans.
Key Evaluation Findings
Substance Use
The overall goal of the project was to create a model program that would prevent, decrease, or delay the use of alcohol, tobacco or other drugs by adolescent females with disabilities. Results of the CSAP Student Survey administered at baseline, exit, 6-month and 18-month follow-up show an overall decrease in alcohol, tobacco and marijuana use in contrast to the comparison group, which showed an overall increase.
Disability awareness
One of the project's primary hypotheses was that if the participants were informed of their disability, they would be better equipped to transition into adult women. Across all three cohorts both groups demonstrated an increased awareness of their particular disability and how it affects their body, how it impacts their life and what accommodations or assistance they need and have a right to have in the classroom setting. In open-ended questions about whether they were getting the assistance they needed in school, the Living Out Loud participants were able to articulate specific accommodations in contrast to the comparison group who answered that they just needed to "study harder" or "don't know."
Destructive Behaviors
One program objective was to raise awareness of, and/or decrease the incidence of destructive behaviors. Both physically disabled and learning disabled participants increased their knowledge of destructive behaviors (good touch vs. bad touch, signs and symptoms of eating disorders) within the context of their disabilities (dependence on others.) Evaluation measures indicate that their understanding of the impact of alcohol and drugs (date rape, etc.) on these situations was also increased.
Future Plans
Research shows girls with disabilities have poor postsecondary outcomes. The project strove to mitigate that for our participants by creating opportunities to explore various vocational options, meet employed women with disabilities and assist them in applying for colleges. The physically disabled group demonstrated an increase in confidence that they would be able to support themselves and live independently as adults.
Self Esteem
Our study results demonstrate that female adolescents with disabilities have the same low level of self-esteem as non-disabled female adolescents. For both of the participant groups and the comparison group demonstrated at or only slightly below the median for all measures on the Piers-Harris, with the exception of one indicator. In response to the statement, "I like my body size," both groups of participants reported an increase in satisfaction with their bodies at the end of the year. The comparison group's responses did not change.
Program Successes
The program had a positive impact on the development of a positive disability identity among the girls who know feel that they are a part of a larger community, the disability community.
The girls had a greater understanding of their disability and the tools to accommodate it. One participant stated: "Living Out Loud helped me address the fact that I had a disability. It helped me learn that I did not need to be ashamed, which is why I kept away from people." According to another participant: "This program taught me to advocate for myself and to deal with my learning disabilities. I really like this program because I really didn't know what kind of disabilities I had and now I do."
The participants had a sense of entitlement to receive their specific disability-related accommodations and they developed the skills to advocate for themselves. For example, one young woman stated that because of the program: "I have to speak out for what I believe in . . . to make a big deal about accessibility . . . to have a voice . . . to feel comfortable saying I can't do it."
Some achievements seemed small by external standards yet were highly significant in the lives of participants, such as getting one hundred percent correct on a spelling test for the first time, or a girl's having the knowledge and confidence to tell siblings that she is not stupid - she has a learning disability.
According to interviews with the girls, the most valuable part of the Living Out Loud program was spending time with other disabled girls and with an adult woman with a similar disability.
Girls at Fremont High School have turned Living Out Loud into an extracurricular club on their campus and are meeting.
Living Out Loud turned out to be dropout prevention for some who only came to school for the group meetings.
Conclusions
The Living Out Loud Project was the first comprehensive study to examine the behaviors and attitudes of female adolescents with disabilities. It was a true pilot project, built from hypotheses that were strong, but not grounded in research. Results demonstrate that there is a link between disabled girls having an understanding of all of the aspects of their disability, the belief that they can support themselves and live independently and their likelihood to engage in certain risky behaviors such as substance use. One major finding is the overall positive impact of having disabled women run the program and providing the girls with regular and structured opportunities to benefit from mentoring, explore issues and learn from one another.
References
American Association of University Women. 1990. Shortchanging girls, shortchanging America: A call to action. Washington, DC: Author.
Bodinger-de Uriarte, C. & Austin, G. 1991. Substance abuse among adolescent females. Prevention Research Update, No. 9. Portland, OR: Western Regional Center for Drug-Free Schools and Communities
Cross, S., Kaye, E., & Ratnofsky, A.C.. 1993. A report on the maltreatment of children with disabilities. Washington, DC: National Center on Child Abuse and Neglect.
Fine, M. & Asch, A., Eds.. 1988. Women with disabilities: Essays in psychology, culture, and politics. Philadelphia, PA: Temple University Press.
Moore, D. 1992. Preliminary research findings. Dayton, OH: Center on Wright State University
O'Toole, C. 1979. Disabled women: The case of the missing role model. Independent, Issue 2.
Resource Center on Substance Abuse and Disability. 1992. A look at alcohol and other drug abuse prevention and. . . disability and enabling. A fact sheet. Washington, DC: VSA Educational Services
US Department of Education. 1998. To assure the free appropriate public education of all children with disabilities: Twentieth annual report to Congress on the implementation of the Individuals with Disabilities Education Act (IDEA). Washington, DC: Author
Wagner, M. 1992. Being female - A secondary disability? Gender differences in the transition experiences of young people with disabilities. Menlo Park, CA: SRI International.
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