Summer camp for youth with disabilities

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ADAPTED PHYSICAL ACTIVITY QUARTERLY, 2005, 22, 159-158 © 2005 Human Kinetics Publishers, Inc.

Donna L. Goodwin is with the College of Kinesiology at the University of Saskatchewan, Saskatoon, SK CANADA S7N 5B2. E-mail: [email protected]. Kerri Staples is with \bb\ at McGill University \bb\..

The Meaning of Summer Camp Experiences to Youths With Disabilities

Donna L. Goodwin University of Saskatchewan

Kerri Staples McGill University

The purpose of the study was to capture the meaning of segregated summer camp experiences to youths with disabilities. The experiences of nine youths with physical, sensory, or behavioral disabilities between the ages of 14 and 19 were captured using the phenomenological methods of semistructured interviews, document review, and field notes. Mothers’ perceptions were also gathered. The thematic analysis revealed three themes: not alone, independence, and a chance to discover. Camp experiences provided a reprieve from perceptions of disability isolation often felt in their home communities. The campers experienced increased self-reliance, independence, and new understandings of their physical potential. The findings are discussed within the context of identity development and therapeutic landscapes.

Summer camp programs for youth with disabilities in North America represent three broad categories. There are camps that are (a) inclusive in nature, bringing together youth with and without disabilities to enjoy recreational experiences (Bedini, 1990); (b) segregated in nature, providing recreational programs specifically designed for campers with disabilities within barrier free environments (Thurber & Malinowski, 1999); and (c) designed to provide the medical and social supports necessary for campers who might otherwise be excluded from recreational camp settings (e.g., campers with kidney disease, cancer, sickle cell disease, asthma; Klee, Greenleaf, & Watkins, 1997; Martiniuk, 2003; Powars & Brown, 1990; Punnett & Thurber, 1993).

The ideology of inclusion has resulted in increased opportunities for youth with disabilities to attend typical summer camps, while segregated recreational camp programs for otherwise healthy youth with disabilities have become fewer in number (Bullock, Mahon, & Welch, 1992). Programs that have provided exemplary summer camp services solely for youth and adults with disabilities for over 25 years are moving toward models of inclusion, resulting in the closure of segregated camps. Easter Seals of North Carolina, for example, made a radical

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departure from its traditional segregated camping programs by providing a range of recreational options including Mainstream, Modified Mainstream, and Segregated options (Bullock et al., 1992). In the Modified Mainstream Option the Easter Seals program provided trained staff and counselors to accompany Easter Seal campers to mainstream regional camps. The full Mainstream Option consisted of Easter Seals staff conducting on-site staff training and consultation to mainstream camps that accepted campers with diverse needs. An evaluation of this progressive mainstream model recommended segregated options remain an option to families, albeit a less desirable and unnecessary option for most campers.

The decline in segregated programs has been due, in part, to perceptions of inequality in service provision involving overprotection, restricted activities, and thwarted opportunities for social development (Bedini, 1990). Moreover, many of the segregated camp experiences available to youth with disabilities fall under the auspices of charities that have been further criticized for fund raising tactics that capitalize on the sentiments of pity, thereby reinforcing the dependency stereotype (Gill, 1997). It has been further suggested that moving away from inclusion in service delivery may be a step backward in terms of equity of access and social justice (DePauw & Doll-Tepper, 2000).

In light of the closing of segregated camp experiences, the availability of inclusive summer camp programs to campers with disabilities remains a concern. In Ontario, Canada, for example, approximately 20% of 200 accredited camp administrators indicated they would like to have their camp name appear on an “Integrated Camp List” (Bogle, 1996). Reasons for not being on the list were inaccessible facilities and lack of trained staff. It would appear that opportunities for youth to come together with peers with disabilities in summer recreational settings are precarious for reasons of public acceptability, financial support, and even legal standing (Kearns & Collins, 2000). In the USA, according to Section 302 of the Americans with Disabilities Act (P.L. 101-336) providing separate, albeit equal services and programs as a public service is considered to be a discriminatory practice (Germ & Schleien, 1997).

By supporting ideologically, financially, and emotionally, the inclusion of persons with disabilities in programs originally designed for persons without disabilities, issues of isolation, loneliness, and disempowerment have begun to surface (Mulderij, 1997; Taub & Greer, 2000). The importance of segregated or disability-only physical activity and recreational experiences as therapeutic landscapes (Gesler, 1992) for individual biography and identity development may have been overlooked (Groff & Kleiber, 2001). Those with disabilities remind us, “Many of us growing up with disabilities have few peers with disabilities. We do not have playmates, friends, or confidants who share our unique identities and perspectives” (French Gilson, Tusler, & Gill, 1997, p. 8).

Youth with disabilities can internalize the stigmatization they experience in inclusionary settings and may feel uncomfortable associating with others with disabilities, perhaps in part because their social models are ambiguous or their relevance to personal identity development is unclear (Cote & Levine, 2002; Gill, 1997). Hutzler, Fliess, Chacham, & Van den Auweele (2002) reported that all of the 10 students between the ages of 9 and 15 years they interviewed about their inclusive physical education experiences tried to identify themselves with their able- bodied peers. One of the young women went so far as to say she was ashamed to be

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seen with other children with disabilities. She did not want the stigma associated with disability to be generalized to her. These authors suggested the avoidance of disability peer models may be later linked to anxiety and maladaptive behaviors as the gap between the socially constructed ideal image and the real self-image becomes evident. The social identity of these youth with the larger social structure of mainstream society reflects the pressure they encounter to fit in and sustain a social role or membership reflective of the mainstream group (Cote & Levine, 2002; Leary, 2002).

Whereas numerous groups feel the sting of stigmatization (ethnic minorities, homosexuals, women), parents with children with disabilities are seldom members of the disability community themselves (French Gilson et al., 1997; Gill, 1997). Parents of children with disabilities may not be as well prepared as other minority parents to pass on “survival” techniques learned through their own identity with the minority culture in question. The process of forming an adult identity by assuming or fitting into the culturally prescribed roles of their parents and grandparents is not as straight forward a process for young people with disabilities as it may be for those without (Cote & Levine, 2002). Children and youth can be placed in situations of having to negotiate their disability identity on their own while integrating it with their nondisability identity within the mainstream social context (Gill, 1997; Low, 1996).

The avoidance of persons with disabilities by those with disabilities is not an uncommon response. Gill (1997) provides several explanations for such avoidance. She contends (a) contact with other persons with disabilities can evoke disturbing memories of rehabilitation hospitals or other sites of disability segregation, (b) an assertion of the right to inclusion in all instances, (c) internalization of the public’s devaluation of disability thereby rejecting those with disabilities as valued companions, and (d) a fear of stigma contagion by association. Alternatively, persons with disabilities who have been isolated from others with disabilities due to transportation, environmental, geographical, or mobility reasons often find unexpected joy in the company of others “who have been there.” Gill refers to a shared identity with others with disabilities as “coming home” or integrating with the disability community (p. 42).

Pensgaard and Sorensen (2002) highlighted the importance of contexts that bring persons with disabilities together, “An empowered group or organization is characterized by a high degree of participation of individuals in decision-making processes, identification with other group members, social support, and sharing of information, knowledge, and collective resources” (p. 57). Through the process of self-categorization that accompanies feelings of belonging to a socially relevant group comes differential treatment to those they identify with the group (Leary, 2002). The more a person identifies with another, the easier it becomes to empathize with other members of the same group. Furthermore, personal identity with disability denotes an individual’s ability to find a fit between their social identity (i.e., position within a social structure) and the uniqueness and idiosyncrasies of their life history (i.e., biological dispositions and personal agency; Cote &Levine, 2002).

The purpose of typical summer camps is primarily to provide a pleasant recreationally-based experience with other youth (Thurber & Malinowski, 1999). Secondary goals can include the development of activity related skills, the encouragement of self-reliance, enhanced self-esteem, and opportunities for peer

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relationships (Kiernan & MacLachlan, 2002). An additional reported outcome of the disability camps is the mutual self-help that occurs as children share their fears, anger, frustration, loneliness or guilt, and come to realize that they are not alone in their feelings (Maher, 1995; Mulderij, 1996, 1997). Consequently, recreational settings provide a landscape within which youth with disabilities have the opportunity to explore identity alternatives (Groff & Kleiber, 2001; Henderson, Bedini, & Hecht, 1994; Sherrill, 1997; Williams, 1994).

Conceptual Framework

Gesler (1992) presents therapeutic landscapes as those that have restorative qualities for environmental, individual, and societal reasons. He drew on cultural geography to expand the traditional definition of geography beyond the interaction of physical and human processes to include the social structures within those settings. The strong sense of place that emanates from the notion of cultural geography is said to be attributed to the physical surroundings, historical context, and release from the routines and demands of daily life they offer (Gesler, 1992). The importance of these pluralist qualities is linked to their symbolic meanings to both physical and psychological health (Kearns & Collins, 2000). “Social scientists who study health would agree that environment and culture play extremely complicated, interacting roles in health” (Gesler, 1992, p. 737).

The sense of place associated with cultural geography refers to the meaning, intention, and significance individuals or groups give to places, be they hospitals, schools, or recreational settings (Kearns & Collins, 2000). Much of the meaning attributed to therapeutic landscapes can be associated with and culturally coded through the symbols associated with the landscapes. For example, the white coats of physicians emphasize the biological component of disability (medical landscape), the parallel bars of the therapy setting emphasize restoration to previous levels of function (rehabilitation landscape), and the lake front of a summer get-away emphasize the regenerative qualities of self-reflection (recreation landscape).

For the purposes of this paper, the term therapeutic landscape will be used to describe the restorative qualities of recreational settings. Therapeutic recreation by definition contributes to an individual’s morale, the return of function, teaches skills related to creative use of leisure, and reinforces abilities associated with living independently in the community (Kraue & Shank, 1992). While camp experiences solely for persons with disabilities continue to survive, little information is available on their therapeutic value in individual and group identity development. The interactive and restorative qualities of the environment, the individual, and social context of segregated summer camps provided a meaningful and yet parsimonious conceptual framework from which to interpret segregated summer camp experiences as therapeutic landscapes.

The purpose of this study was to capture the meaning of summer camp experiences solely for youth with disabilities. More specifically, the research questions were the following: (a) What meaning does participation in segregated recreational programs hold for youth with disabilities; (b) What within the segregated camps experience is of relevance to identify development; and (c) Do parents share their children’s meaningfulness of the segregated recreational experience?

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Method

A phenomenological study was undertaken as it provided the sensitive and sophisticated perspective needed to understand and describe the essence of day-to-day experiences of youth with disabilities as they negotiated the environmental, individual, and social contexts of a camp experience (van Manen, 1997). Phenomenology offers a descriptive, reflective, interpretive, and engaged mode of inquiry that seeks to understand and describe the essence of experiences and enables underlying structures (themes) and commonalties in meanings to be understood (Moustakas, 1994). Phenomenology is inherently hermeneutic in nature in that although the participants and mothers spoke for themselves, to understand the commonality of meaning behind the experiences requires interpretation on the part of the researcher and reader (Allen & Jensen, 1990; van Manen, 1997).

Participants

An opportunistic sampling strategy was undertaken, meaning that all of the participants were drawn from the pool of participants who attended the same national summer camp program (Cresswell, 1998). In addition, only those campers who could complete in-depth telephone interviews were invited to participant (no significant cognitive impairment). A letter of invitation was sent by mail to 41 of the 55 families. Nine campers (8 with congenital disabilities and one with an acquired hearing impairment) and their mothers volunteered to participate (see Table 1). Pseudonyms have been used to protect the participants’ identities. As parents are active decision makers in the choices of organized activities in which their children partake (Prochaska, Rogers, & Sallis, 2002), the mothers’ expectations for and perceptions of their children’s experiences were also of interest.

The campers, 4 young women and 5 young men, ranged in age from 14 to 19 years (average age 16 years). The participants were from 6 provinces and

Table 1 Summary of Participants

Age in Home Camper Sex years Disability locale Mother

Megan F 14 CP – ambulatory City in PEI Diane Teran F 16 CP – ambulatory City in BC Anne Mandy F 19 HI – FM system user City in AB Jane Cassie F 15 Asthma, VI, and MI Town in NB Janice Ben M 14 CP – wheelchair for distance Town in SK Debra Ryan M 17 CP – wheelchair user Town in NB Jodie Paul M 17 VI – tunnel vision Town in NT Karen Phil M 16 CP – wheelchair for distance City in BC Joyce Nathan M 16 Autism spectrum disorder City in ON Heather

Note: CP = cerebral palsy, VI – visual impairment, MI – mobility impairment

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one territory representing all major regions of Canada (see Table 1). They came from small towns and large urban centers. The disability representation included cerebral palsy, sensory impairments, multiple disabilities, and autism. Demographic information on the mothers of the participants was not collected and is a weakness of the study.

Data Collection

To gain a broad view of the setting, information in the form of one-on-one semistructured telephone interviews, artifacts (photographs and written documents), and field notes were gathered over a six-month period following the camp (Janesick, 1994). The primary sources of data were the in-depth interviews with the campers and their parents. To provide supporting evidence to the transcripts (Kuzel & Engel, 2001; Meadows & Morse, 2001), the campers also were invited to share photographs of their experiences (Emmison & Smith, 2000). The letters of application written by the campers were also reviewed.

Interviews. Due to the vast geographic areas represented, telephone interviews were completed. Although telephone interviews are cost effective, can reduce interviewer effects, and bring standardization to the questions and their delivery, we acknowledge they cannot capture the nuances of body language, facial gestures, or the intimacy of a face-to-face interview (Shuy, 2002). The campers completed telephone interviews of approximately 45 to 60 min in length. The mothers’ perspectives were captured in telephone interviews of approximately the same length. The semistructured interviews were audio-taped and transcribed verbatim. At the request of the youth with a hearing impairment, the interview guide with additional probe questions was e-mailed to her and she provided her interview responses via e-mail.

Although separate guides were needed to reflect the perspectives of the campers and their mothers, the topics for the questions were similar. Questions were phrased in two broad areas, the meaning of the camp experiences to the youths that attended and the experiences of being in a recreational setting with other youths with disabilities. Sample questions asked of the campers included these: (a) What did you learn about yourself and others while at camp? (b) What experiences were most meaningful to you? (c) What memories or feelings did you take home with you? (d) What it was like to meet youths with disabilities from across Canada in a camp setting? (e) What stories did you share with your parents or friends upon returning home?

Documentation. Seven of the nine campers shared photographs they took during their time at camp. The photographs provided another way for the campers to symbolically express their thoughts and feelings about their camp experiences and express information that may not have been articulated during the interview (Graue & Walsh, 1998; Johnson & Weller, 2002). The significance of the photographs was provided in writing at the time the campers submitted the photographs. These descriptions, as well as the letters of applications written by the campers outlining why they should be selected to attend the camp, became part of the textual record (Pink, 2001; Jewitt & Oyama, 2001).

Field Notes. At the end of each interview, reflections on what was said and preliminary thoughts about emerging themes were recorded. These notes were used to conceptually return the researchers to the interview setting during the analysis of the data (Bogdan & Biklen, 2003).

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Trustworthiness

Multiple strategies were incorporated into the study thereby bringing plausibility to the essences of the captured experiences, congruence between the research question and the information presented, and authenticity to the findings (Denzin, 1994). Confirmability was sought through the use of multiple data sources. Campers and mothers were purposively and systematically included in the study (Flick, 1998). In addition, the number of participants included in the study resulted in data saturation whereby repetition of the information and confirmation of previously collected data across participants was sought (Morse, 1994). Methodological triangulation was undertaken as interviews, document review, and field notes were used to capture the experiences of the participants and bring a sense of relational knowing to the information. To reduce researcher bias beyond the confirmability strategies described, investigator triangulation also occurred (Cresswell, 1998). The authors possess an adapted physical activity background as well as expertise in qualitative inquiry, interview techniques, and knowledge of physical activity and children with disabilities.

To bring dependability or consistency to the interpretation of the data, two data-coders completed interpretive code checks. An audit trail also was kept documenting methodological decisions, contextual notes, and personal analytic comments so as to acknowledge the complexity of the information (Meadows & Morse, 2001). The interview guide was developed with the support of the second author who also was one of the camp leaders. This brought credibility to the relevance of the interview questions asked and their relevancy to the research question. Interpretive code checking between the two authors during the analysis phase of the study added to the credibility of the interpretation of the findings. Member checks were not completed with all participants, although two families were asked if they saw themselves in the interpretation of the findings. Both families indicated they felt the themes captured the essences of their experiences. The transferability or fittingness of the findings beyond the study to other contexts and settings rests with recognizable congruence of summer segregated program activities, sites, age, and abilities of the campers (Schofield, 1990).

Description of the Camp

The Active Living Alliance for Canadians with a Disability in partnership with YMCA Youth Exchanges Canada sponsored a national summer camp experience to provide an opportunity for youths from each province and territory to share their experiences, come to understand and value an active lifestyle, and learn more about other regions of Canada. The goals of the camp were to (a) create an enjoyable experience for all attending, (b) foster friendships, (c) build self-worth and self- confidence, (d) provide a wide range of physical activity pursuits, (e) experience campus life, and (f) develop an appreciation for the diverse cultures of Canada.

The campers were required to submit an application for acceptance at the camp explaining why they would be good candidates for the camp. In addition to the application, two letters of support were required, one from a member of the home community and one from their school. No camper was turned away due to financial concerns because substantial funding was available to this national initiative. As the campers traveled substantial distances by air, they could bring a peer buddy with them to camp if they so chose. Four of the campers brought

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friends with them while five elected to attend alone. The practice of inviting friends to camp was discontinued following the evaluation of this inaugural year. Travel support and in-camp support of friends was not deemed necessary by the camp organizers.

Scheduled activities included tennis, sailing, swimming, horseback riding, dancing, fencing, Jiu Jitsu, fitness activities, rock climbing, and high ropes. Hang- out time also was scheduled into the program whereby campers spent time getting to know more about each other and their respective home communities.

Whereas many summer camps are located in natural surroundings away from urban settings and familiar surroundings, this camp was situated at a university campus. The campers resided in the university residences, ate in the student cafeteria, and took advantage of the university sport and recreation facilities and cultural activities in the surrounding area (dinner theater, tours of local attractions).

Data Analysis

To identify common threads that extended throughout the data, an inductive analytic thematic analysis was conducted (van Manen, 1997). To isolate the emerging thematic statements, a line-by-line analysis was conducted. This entailed reading the transcripts and field notes numerous times. Particularly revealing phrases were highlighted and coded with meaningful labels. The data analysis continued by constantly comparing phrases to determine whether they should be classified separately or whether they belonged to an existing code (Wolcott, 1994). To enhance confirmability of the emergent themes, the letters of application and the descriptions of the significance of the photographs provided by the campers also underwent a line-by line thematic analysis. The essential or invariant themes, those that gave fundamental meaning to the phenomenon as identified by their pattern regularities, were then determined (van Manen, 1997; Wolcott, 1994, 2001). Although the photographs themselves were not analyzed for their content (what was in the photograph) or their referent (what the photograph was of) (Emmison & Smith, 2000), many examples of social interactions (sailing) and well as novel individual efforts (high ropes course) were evident.

Results

Three themes emerged from the data (a) not alone, (b) independence, and (c) a chance to discover. Although the campers were of different ages, sexes, and disabilities, the researchers heard these common themes run through their camp experiences. The development of a strong sense of community and social belonging was evident in the participants’ portrayals of their camp experiences thereby reinforcing the notion of recreational camps as therapeutic landscapes. Their close social contact and shared life experiences provided a reprieve from the disability isolation they felt in their home communities giving social and cultural meaning to the segregated camp context. In the letters of application, the anticipation the youths felt in meeting other youths with disabilities was very evident. Of particular note was the degree to which the mothers of the campers echoed the themes in their reflections of their children’s experiences.

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Not Alone

Although throughout the year the youths had contact with young people without disabilities on a daily basis through school and other social activities in their communities, they had little opportunity to interact with youths with disabilities. The impact of this disability isolation was apparent in the participants’ comments about discomfort with having a disability and how rewarding it was to discuss issues with others who had “been there.” Five of the 9 participants indicated in their letters of application to the camp that they looked forward to meeting other youths with disabilities. The benefit of the segregated camp environment was evident in Ryan’s application letter:

I want a chance to share. I have never met with a group of young people with disabilities, always youth without disabilities. It would be interesting to share how others with disabilities experience their communities and how they are looking to their future.

Teran also was interested in meeting other youths with disabilities similar to hers to learn more about who she was. “I think the youth exchange would be a great way for me to meet other teens from across Canada with similar disabilities as mine . . . to learn more about my disability as well as other disabilities too.” Megan’s desire to meet other youths with disabilities was motivated by her desire to learn more about what their interests were. “I don’t have much of a chance to talk with other disabled teens and find out what they do for fun and stay active because there aren’t many of them or any programs for them.”

The campers welcomed the opportunity to talk to others about their disability and learn more about disabilities. The social significance of the segregated camp environment for individual biography development cannot be overlooked, particularly in light of Cassie’s experiences. At age 15, Cassie met for the very first time another person with a visual impairment. The segregated camp environment provided an opportunity for youths to come together and share common life experiences while also learning about themselves. There was a comfort level being in a social environment where disability was the norm and not the exception. Megan recalled, “[Camp] was fun. You talked about what it was like being disabled, your experiences. You didn’t have to act. I was more at ease with them.”

Several of the campers reflected upon the uncertainty around their own disability identity and the desire they felt to talk to others with disabilities about their uncertainty. Ben’s sense of isolation, due in part to his rural location, was further accentuated because he was home schooled. Even though he excelled in his studies and was working on a Bachelor of Arts degree at age 14, he longed to be among a group of young people. “It would be really neat to go somewhere and learn something with a group of young people. Sometimes I feel uncomfortable with looking disabled and I would like to talk to other teenagers with disabilities.”

The evaluation, stereotyping, and taunting that contributed to feelings of isolation at school were not evident during their camp experiences. Cassie recalled,

There was nobody there that laughed or was making fun of other people. There was no stereotyping. There was nobody looking down on me. I get that all the time at school and at different things that I do.

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A sense of belonging was reflected in the participants’ stories of camp. Ben’s opportunity to be among a group of youths with disabilities gave him a sense of coming home. Being a member of a larger community resonated loudly in his short but powerful statement: “I learned that I was not alone with being disabled.” One of the photos that Paul selected to help express the significance of his camp experiences depicted three people facing the camera with enormous grins. Paul was in the center with his arms around two of his fellow campers. In describing his photograph, Paul recollected, “Meeting and making friends from across Canada gave me a sense of belonging. I have stayed in touch with some of the people I met and will continue these friendships.” The participants expressed feelings of acceptance, understanding, and a sincere connection to the other campers. Teran recalled, “It was an experience I will never forget because we connected so well. Everyone understood and you didn’t have to worry about people judging you.” Megan concurred:

It was fun. You talk about what it was like being disabled. You didn’t have to act. I was maybe more at ease with them. When you are with a friend who is nondisabled, you can’t really forget that you’re disabled.

The mothers also wanted to see their sons and daughters connect with other youths with disabilities. The mothers were aware of the isolation they experienced as youth with disabilities in their home communities. The mothers recognized the life experiences associated with disability could only be truly understood by another who shared in those experiences. Karen (Paul’s mother) recalled,

He is pretty much a loner. I thought it would be a chance for him to develop friendships and meet other people who are in similar situations. It’s very difficult being in such a small and remote community. He doesn’t really have many friends here . . . he does feel alone, that he’s an oddity. He doesn’t really participate an awful lot with kids of his own age.

As much as mothers love, nurture, and prepare their children for adulthood, they cannot take away the impact that disability has on self-identity and how they are perceived by others. Debra’s pleasure in her son (Ben) interacting with his true peer group was clearly apparent.

I have never seen him feel so much that he was in a group of peers. . . . It helped give him perspective. I think it made him feel way more normal. . . . The experience of spending several days with a huge group of peers and feeling perfectly normal was just wonderful, incredible and it certainly did something to him as a person. His social maturity just started taking off there. To put a kid with a disability in with a bunch of other kids his age in a classroom or wherever and say it’s inclusion that isn’t. They still are not peers.

Summer camp is often perceived to be an opportunity to enjoy recreational activities in a socially rewarding context. The experiences of the campers of this study suggest that the social landscape of segregated summer camps can be much deeper than was previously recognized. Connecting with other youth with disabilities provided a landscape to explore individual biographies, identify

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with a group of common mindedness and experience, and share in the collective experiences and interests of others with disabilities.

Independence

The youths spoke of feeling more independent during and after their camp experiences than prior to attending the camp. The period of time and distance they were from their families required them to be self-reliant. Although many of the campers had been away from their parents previously and even traveled on airplanes, they realized the safety net that was often present in more locally based experiences was absent in this context. The youths spoke of being more confident and determined to do things independently. Ryan recalled,

When I first heard of it I was nervous of the thought of going away and being with other people. But at the same time I was very excited, so I thought this is my opportunity to be away from mom and dad and most of my friends. I knew mom wasn’t going to come running; she can’t just drive up. It was neat.

Phil also spoke of the how the camp environment provided him with an opportunity to exercise independence and test his ability to take care of daily tasks without parental supervision or support. The self-assurance he experienced was also echoed in his thinking forward to leaving home and attending university. The impact of children with disabilities thinking about leaving home and leading independent lives must be of immense importance to parents. The segregated camp experience within this university based experience provided an environment for the achievement of outcomes far beyond the traditionally perceived recreation activity and socialization benefits. Phil recalled,

Each time I tried a different activity, I got a different perspective. I learned how to be more self-confident and independent, being that far away for an extended period of time. I think I handled it pretty well. I set up my own wake up call . . . I liked the whole staying away from your parents. Then you get to see for your future. . . . You get to see what its like to stay in residence, and study at an actual university. It’s like it raises your independence level more so that you get ready for when you’re an adult and you move away.

Being among youths with disabilities in a physical activity context highlighted the self-determination, strength of character, and will of the other campers. The group experience appeared to contribute to the youths’ need to prove to themselves, their fellow campers, and the camp leaders that they had what it took to overcome apprehensions, try new activities, and make new friends. Ben also disclosed how his opinion of himself and what persons with disabilities could do changed as a result of his camp experiences.

I was learning to become independent at the exchange. I am able to do a bit more stuff around the house than I was before I went. The confidence I gained was tremendous. That’s what I am trying to go for. The confidence helped me. . . . I think that persons with disabilities are able to do anything if they want to, if they are able to set their minds to it. Before I wasn’t so sure.

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The mothers also spoke of the impact that being with their new friends and older children had on their children’s desire to succeed and demonstrate that they could be self-reliant. Debra commented on the positive peer pressure that the camp environment provided. The self-checking and withdrawing from activities that may have occurred in other environments was overcome. The camp provided an environment to explore who they were and wanted to be. Debra recalled,

I think being in a university environment and being with the older youth and stuff sort of encouraged him to move toward that young adult that he can be instead of being a kid. I think it helped him to take that step forward. He tried things because his peers were there that he would not have done otherwise. And he told me that there was no way that he would not have gone. “Mom all my friends were standing there.” Positive peer pressure.

Situating the camp at a university and housing the youths in a university residence setting resulted in some of the campers thinking about their futures and the eventuality of moving away from home. They negotiated an unfamiliar and adult oriented environment, including the campus residence, cafeteria, physical activity complex, and student union facilities. The mothers also shared a need for their children to begin distancing themselves from them, emotionally and physically. The camp provided a mechanism for both the mothers and children to explore their mutual independence. Anne spoke of her daughter’s experience of being away on her own:

It was the first time that she had traveled completely on her own. We were concerned about whether or not they can manage things on their own, especially as they get older and older, more toward living on their own. So it was good for her to be able to have this chance.

Joyce, on the other hand spoke of her emotion around putting her son on an airplane to be so far from home for an extended period. It was a time for him to build confidence, but also for her to begin the process of letting go. “I was so proud, and of course a little bit nervous, certainly choked up as well. I am still feeling a bit choked up.”

The therapeutic nature of the physical landscape of the camp was cause for the campers to learn new skills (e.g., physically negotiate the complexities of a university campus), optimize existing skills (e.g., management of daily living skills and time), and challenge their physical abilities (e.g., explore new physical limits). The environment provided subtle pressure to excel to the best of one’s ability, validated by standards reflected in the accomplishment of fellow campers with disabilities. The university residences, for example, were symbolic of newly affirmed independence thereby reaffirming the cultural significance of this landscape to self-discovery.

A Chance To Discover

Being among other youths with disabilities afforded the campers the opportunity to discover more about physical activity and recreation opportunities available to them. The campers were by nature very confident and capable young people. Even

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so, they expressed doubt in their own abilities. Paul, who had a visual impairment, not only doubted his own ability to participant in some activities but was surprised at the abilities of his fellow campers.

I learned that there were many opportunities open to people with disabilities . . . all the things that I could do that I kind of doubted at first. Actually, what I experienced widened my eyes to different types of activities that disabled people can achieve, like the fencing.

The camp setting provided the opportunity for the campers to face doubts they may have held about their ability and in some instances “put them to the test.” For example, Phil indicated that his ability to function within the limits of his disability were higher than he had previously believed. “I learned that my limitations are pretty high. I can do almost pretty much anything. I also learned that it’s different for everyone. No matter what your ability is, you can still participate in different activities.” Cassie similarly indicated that the camp provided a context within which to explore her limits. Whereas, she previously, either consciously or unconsciously, restricted her willingness to become involved, the camp environment encouraged her explore new activities. “I really changed in some ways because I had a broader outlook on things. And I wasn’t trying to restrict myself, like I was willing to try more things.” Megan discovered also that she was more capable than she previously thought. “I learned that I can actually do a lot more activities than I thought I could do, like the high ropes challenge.”

The mutual respect that developed among the participants was unmistakable. The camp environment brought together youths with diverse backgrounds, abilities, and aspirations. The respect and admiration for the accomplishment of others was clear. The campers shared their increased understanding of themselves, those with whom they interacted throughout the week, and the potential they possessed individually and as a group. Teran expressed a strong sense of community when she said,

I learned that anything is possible for youth with disabilities. It opened my eyes to see that there are all different kinds of people and how diverse we really are, like different disabilities and how we can all come together despite these disabilities. It was inspirational. I saw other youth that have worse disabilities than me and I saw how they did the activities.

Paul indicated that his own assumptions about the abilities of those with disabilities were dispelled. In describing the significance of a photo depicting a fellow camper who was a wheelchair user on the high ropes course, Paul, who does not use a wheelchair, expressed how impressed he was that people who used wheelchairs would embrace this activity. Paul transferred the apprehension and sense of satisfaction he felt upon completing the course to his fellow camper who he perceived to have less functional mobility than himself.

Doing this activity gave me a feeling of accomplishment. I was apprehensive at first, but felt satisfaction upon completion. Seeing that people in wheelchairs could experience the feeling was as eye opener and made me realize that we all have opportunities for challenge.

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Whereas Megan described how much she enjoyed various activities such as fencing and sailing, she mentioned with some sadness that there is not a great deal of program support for youths with disabilities in her home community.

Wheelchair fencing was one of the new sports I tried. I liked it a lot. I would have liked to have tried wheelchair fencing when I got home, but unfortunately, we have no sports organizations or teams for physically disabled kids. Too bad.

The experiences of the campers also were reflected in the comments of the mothers. It was important to the mothers to see their children not only come to an understanding of their own capabilities, but also see how other youth functioned and interacted within their environments. Karen felt that the camp provided an opportunity for her daughter to reflect upon her strengths. “I think it helped with the perspective thing, because she will run around moaning about being disabled. It is good to have the perspective that you are not that disabled.”

Although the mothers were very supportive of the experience, in some cases they felt they did not have the personal or community resources or tools to build on the experiences their children gained at the camp. The campers spent one week learning, exploring, sharing, and growing together. Upon returning home, however, the realities of poor facilities, lack of opportunities, and physical distance from programs were once again apparent. Karen put it very well when she indicated the positive camp experience only reinforced further how limited her son’s previous experiences had been:

I think it’s good for anyone to experience these things. It opened his eyes to try different things; to see what is available out there. But at the same time, when he came back . . . I think in some ways it was an awakening to what we don’t have here, rather than what we do.

Debra suggested there is a need for follow-up to such intense experiences. She and her son had learned so much and yet she felt at a loss as to how to pursue physical activity and recreational activities in her home community. Debra suggested the services of a family recreational counselor that families could call upon to inform and support families in recreational planning would have been of benefit to her.

I am thinking about someone like a school counselor to talk you through how we might find ways for him to live out or develop new interests. He came back from camp and all of a sudden realized that maybe he can do things that he didn’t think he could. You could brainstorm with them. I am not thinking that they would necessarily provide the program, but they’d enable you to apply whatever you had brainstormed about.

Discussion

Therapeutic landscapes are those with restorative qualities for individual, environmental, and societal reasons. The camp experience provided a personal, physical, and social landscape from which to learn more about their own capabilities, the capabilities of others, and their physical potential. The opportunity to express their independence and learn to be self-reliant while away from family was

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welcomed. The camp was an environment where personal independence and management of time were expected. The subtle peer pressure they experienced to do it on their own provided further motivation to be independent and take on challenges they might not have sought previously. The campers came away with new perspectives about who they were and where their futures may be taking them. The interaction of the environment of a residential camp, the individual demands in meeting the camp schedule, and the segregated social context had provided a therapeutic or restorative landscape for personal and group identity formation.

The experiences of the youth of this study suggest they have few opportunities to come together to explore their individuality, their social connectedness to others with disabilities, and the change in perspective that a recreational environment can provide. While the participants of this study enjoyed many benefits typical of summer recreational programs, including fun, enjoyment, friendship, and participation in activities not often encountered the remainder of the year, the camp also was a valuable therapeutic context for it provided a setting for identity exploration and self-definition. The inner conflicts expressed around their own disabilities and the disabilities of others were reflected in their descriptions of personal choice and agency through the milieu of physical activity.

All young people struggle with individual identity and individuation from the values of their parents. Youth with disabilities have the additional struggle of negotiating two identities and asserting links to both their disability identity and the disability community, while seeking acceptance in the social mainstream (Gill, 1997). Whereas the individuation time for young adults can be tumultuous for “typical” families, this may not be the case for all families. The parents of this study were very excited and pleased to see their teens take steps toward independence. The assumption of independence that is desired and even inevitable for most young adults may not be one that is easily recognized and shared by youth with disabilities and their families. The options for such “fledging” may also appear fewer and hence seem less achievable.

Groff and Kleiber (2001) point out that “Identify formation is based on the notion of choice and freedom to explore identity alternatives” (p. 319). The therapeutic significance of segregated summer recreational landscape in identity development has received very little consideration. The day to day interaction to which those of us without disabilities are exposed results in the internalization of social norms and values that are influential to identity formation (Cote & Levine, 2002). The youths of this study indicated exposure to the social norms and values relevant to disability identity formation are not available to them on a day to day basis.

The results of this study are similar to those reported by Groff and Kleiber (2001). The participants indicated that feeling connecting to others with disabilities helped them understand themselves better. The camp context allowed them to feel comfortable as youths with disabilities, a context that was not readily available to them in school or other community events. Connecting with other youths with disabilities dissolved, even if for a short period of time, the feeling of disability isolation and created a social landscape of companionship, a sense of belonging, and acceptance. The participants appeared to be articulating their identity as youth with disabilities and connecting with a larger disability community. Carol Gill (1997) refers to this psychological wholeness of coming home as the celebration of a common history, humor, customs, and worldviews.

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Consideration needs to be given to the benefits of residential disability—only recreation programs on individual disability biography development, particularly in light of such circumstances such as rural geography, home schooling, or the inability to take advantage of other physical activity opportunities due to transportation, awareness, environmental, staff availability, programming, or financial constraints that might otherwise bring youth with disabilities together (Bedini, 2000; French & Hainsworth, 2001; Gill, 1997). The goodness or badness of recreational and physical activity programs that bring youth with physical disabilities together may need to be judged on several levels: the level of the participant, the family, the disability community, the service provision level, and the ideological level.

Participants of this study helped to illustrate the value of the segregated summer camp as a therapeutic landscape. Through their recreational time and physical activity experiences, the campers gave new meaning to their understanding of self and that which persons with disabilities were capable. The external influence of time spent with others with disabilities appeared to impact the internal agency of the participants and bring a new level of comprehension to their own self- definition. They moved beyond physical activity limits previously achieved, in part because of expectations set by their peers with disabilities. By observing the successes of other youths with disabilities more significant than their own, the youths accepted challenges beyond their own previously perceived limits. Past experiences in inclusive contexts appeared to not provide the motivation or opportunity to come to understand their full physical potential. The participants acknowledged that the camp experiences afforded them the opportunity to explore activities of their choosing and develop alternate perceptions of their own abilities and that of others.

The precarious nature of summer camps solely for persons with disabilities is due in part to the lack of information regarding their efficacy. The importance of camp experiences in disability community awareness, disability identity development, and the therapeutic benefits of the camp “landscape” have yet to be fully captured. Recreational settings have been identified as one context within which youth with disabilities have the opportunity to explore identity alternatives (Groff & Kleiber, 2001; Sherrill, 1997; Williams, 1994); however, the potential for recreational and physical activities to influence disability identity development is irrelevant if the opportunities to interact with others with disabilities are absent or far removed (Groff & Kleiber, 2001). Providing environments where youth with disabilities can connect with other youth with disabilities may not be a step backward in social justice and disability rights (DePauw & Doll-Tepper, 2000) but rather providing a context for their disability identities to unfold at the individual and group level (Gill, 1997). Youth with disabilities have the complex task of integrating their connection with the disability community with the parent society in which they are educated and will ultimately be employed (Gill, 1997).

Recreational and physical activity programming for persons with disabilities must be understood within a framework that acknowledges stage of life, nature of impairment, functional ability, and personal interests. It would appear that the bandwagon discourse (DePauw & Doll-Tepper, 2000) that has surrounded inclusive programming needs to be carefully articulated so as to represent the multiple perspectives of adapted physical activity consumers and providers. What may be viewed on one level as social injustice due to questions of equity of access to inclusive recreational opportunities for one individual or context may be viewed

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as a landscape for learning, sharing, exploring alternate identities, developing self- reliance, and coming home for another.

There are several limitations of the study. A comprehensive member check procedure was not implemented thereby weakening the dependability of the analysis of the information. The use of telephone interviews and the time that transpired between the camp experience and the interviews may have affected the depth of the information collected. It is also important to note that although the camp was designed for youth with disabilities, some youths did bring friends with them who did not have disabilities. This may have influenced the richness of the disability- only context of the campers’ experience. Future inquiry into the role of segregated physical activity programs as psychologically therapeutic contexts for the discovery, development, and/or affirmation of disability identity is recommended.

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Acknowledgments

The authors would like to thank Jane Arkell of the Active Living Alliance for Canadians with a Disability for making this study possible. Funding for this study was provided by Human Resources Development Canada.