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Positive Identity Development through Community Engagement among Youth with Intellectual and Developmental Disabilities

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Title: Positive Identity Development through Community Engagement among Youth with Intellectual and Developmental Disabilities
Language: English
Authors: Rodriquez, Jason, Gupta, Anmol, Ballard, Staci C., Siperstein, Gary N.
Source: Journal of Applied Research in Intellectual Disabilities. Jul 2023 36(4):758-767.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 10
Publication Date: 2023
Sponsoring Agency: Department of Education (ED)
Contract Number: H380W160001
Document Type: Journal Articles
Reports - Research
Descriptors: Youth, Intellectual Disability, Developmental Disabilities, Self Concept, Self Esteem, Individual Development, Community Involvement, Social Attitudes, Attitudes, Leadership Role, Research Needs
DOI: 10.1111/jar.13091
ISSN: 1360-2322
1468-3148
Abstract: Background: Identity development in individuals with disabilities is often negatively impacted by exclusion, marginalisation, and stigma. However, meaningful opportunities for community engagement can serve as one pathway towards establishing positive identity. This pathway is further examined in the present study. Methods: Researchers used a tiered, multi-method, qualitative methodology consisting of audio diaries, group interviews, and individual interviews with seven youth (ages 16-20) with intellectual and developmental disabilities, recruited through the Special Olympics U.S. Youth Ambassador Program. Results: Participants' identities incorporated disability while simultaneously transcending the social limits of disability. Participants viewed disability as one aspect of their broader identity, shaped by leadership and engagement experiences such as those offered by the Youth Ambassador Program. Conclusions: Findings have implications for understanding identity development in youth with disabilities, the importance of community engagement and structured leadership opportunities, and the value of tailoring qualitative methodologies to the subject of the research.
Abstractor: As Provided
Entry Date: 2023
Accession Number: EJ1379834
Database: ERIC
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  Value: <anid>AN0164115260;e0301jul.23;2023Jun07.06:25;v2.2.500</anid> <title id="AN0164115260-1">Positive identity development through community engagement among youth with intellectual and developmental disabilities </title> <p>Background: Identity development in individuals with disabilities is often negatively impacted by exclusion, marginalisation, and stigma. However, meaningful opportunities for community engagement can serve as one pathway towards establishing positive identity. This pathway is further examined in the present study. Methods: Researchers used a tiered, multi‐method, qualitative methodology consisting of audio diaries, group interviews, and individual interviews with seven youth (ages 16–20) with intellectual and developmental disabilities, recruited through the Special Olympics U.S. Youth Ambassador Program. Results: Participants' identities incorporated disability while simultaneously transcending the social limits of disability. Participants viewed disability as one aspect of their broader identity, shaped by leadership and engagement experiences such as those offered by the Youth Ambassador Program. Conclusions: Findings have implications for understanding identity development in youth with disabilities, the importance of community engagement and structured leadership opportunities, and the value of tailoring qualitative methodologies to the subject of the research.</p> <p>Keywords: audio diaries; community engagement; disability; identity; interviews; youth leadership</p> <hd id="AN0164115260-2">INTRODUCTION</hd> <p>In recent years, youth with intellectual and developmental disabilities have been more socially included in recreational, educational and employment settings, yet research also shows they continue to face exclusion in various domains that generate challenges to identity development (Amado et al., [<reflink idref="bib1" id="ref1">1</reflink>]; Griffin et al., [<reflink idref="bib17" id="ref2">17</reflink>]). The detrimental, stigmatising impact of these patterns of interaction shape identity construction among people with intellectual and developmental disabilities, particularly within the social context of negative stereotypes and a heightened awareness of limitations compared to others (Crabtree et al., [<reflink idref="bib10" id="ref3">10</reflink>]; Grue, [<reflink idref="bib18" id="ref4">18</reflink>]; Logeswaran et al., [<reflink idref="bib23" id="ref5">23</reflink>]; Mueller, [<reflink idref="bib28" id="ref6">28</reflink>]). As a result, it can be especially challenging for people with disabilities to develop a positive sense of identity, or a strong sense of self which reinforces one's self‐esteem, agency to make choices and decisions, and ability to overcome challenges (Catalano et al., [<reflink idref="bib9" id="ref7">9</reflink>]; Tsang et al., [<reflink idref="bib39" id="ref8">39</reflink>]).</p> <p>As far back as Erickson ([<reflink idref="bib12" id="ref9">12</reflink>]), social‐psychological developmental theories have focused on how the experiences during childhood impact identity. More recently, emerging adulthood (Arnett, [<reflink idref="bib3" id="ref10">3</reflink>], [<reflink idref="bib4" id="ref11">4</reflink>]; Arnett et al., [<reflink idref="bib5" id="ref12">5</reflink>]) has been identified as a unique stage of the life course when people between the ages of 18 and 29 go through a multifaceted range of biological, psychological, and social changes that represent a critical period of identity formation. For marginalised youth who are disenfranchised from and stigmatised by mainstream societal institutions, such as students with disabilities, identity development can be especially challenging (Jahoda et al., [<reflink idref="bib21" id="ref13">21</reflink>]). For example, youth with intellectual and developmental disabilities report being separated from their peers in school and feeling excluded from their community, leading to lack of engagement in recreational activities, limited opportunities for rewarding social interactions and difficulties finding meaningful employment (Merrells et al., [<reflink idref="bib25" id="ref14">25</reflink>]). In fact, youth with disabilities often construct an identity through a deficit lens shaped by stigma (Jones, [<reflink idref="bib22" id="ref15">22</reflink>]; Mogensen & Mason, [<reflink idref="bib27" id="ref16">27</reflink>]; Mueller, [<reflink idref="bib28" id="ref17">28</reflink>]). This is reflected in the extent to which people may try to 'camouflage' a disability or resist stigmatising labels as they construct identities (Perry et al., [<reflink idref="bib30" id="ref18">30</reflink>]; Thoits, [<reflink idref="bib37" id="ref19">37</reflink>]), which may impede a feeling of being accepted in a community (Spassiani & Friedman, [<reflink idref="bib34" id="ref20">34</reflink>]). This is particularly significant considering the research showing that feelings of belonging and of being included are critical to the development of a positive identity, especially among individuals with intellectual and developmental disabilities (Forber‐Pratt et al., [<reflink idref="bib13" id="ref21">13</reflink>]).</p> <p>While it is important to examine the impact of persistent marginalisation on identity development among youth with intellectual and developmental disabilities, it is also important to understand how these individuals draw from experiences in their schools and communities that signify belonging and contribute to a positive sense of identity. Consistent with the symbolic interactionist perspective, this study conceptualises identity construction as an ongoing social process that is shaped in interaction and comparison to reference groups (Blumer, [<reflink idref="bib6" id="ref22">6</reflink>]). In other words, the construction of a person's identity is a dynamic and relational social process in which individuals give meaning to their personal experiences within the context of a social structure that shapes the range of meanings available (Blumer, [<reflink idref="bib6" id="ref23">6</reflink>]; Goffman, [<reflink idref="bib16" id="ref24">16</reflink>]; Mills, [<reflink idref="bib26" id="ref25">26</reflink>]). For individuals with disabilities, identifying as part of a club or group with others who share similar experiences may enhance positive perceptions of the social structure, and thereby facilitate positive identity development (Crabtree et al., [<reflink idref="bib10" id="ref26">10</reflink>]; Renwick et al., [<reflink idref="bib31" id="ref27">31</reflink>]).</p> <p>Establishing relationships in a community is key for developing a positive sense of personal identity among people with intellectual disabilities (Strnadová et al., [<reflink idref="bib35" id="ref28">35</reflink>]). However, research suggests that more can be done to provide opportunities that enhance community engagement among youth and young adults. For example, practical help such as available transportation, training in vocational and social skills, social guidance, and creating more environments that are welcoming to people with disabilities would help bolster community engagement (Hall, [<reflink idref="bib19" id="ref29">19</reflink>]). Another recent study showed that young adults with intellectual disabilities who were lifelong recipients of individualised services focused on inclusion nevertheless had difficulty finding employment and felt bored, segregated, and excluded from their communities (Merrells et al., [<reflink idref="bib25" id="ref30">25</reflink>]). Opportunities for inclusive community engagement for both individuals with and without disabilities, such as those offered through Special Olympics Unified Champion Schools programming, is one method of enhancing engagement opportunities to potentially facilitate positive identity development, and meaningful community engagement and self‐advocacy opportunities can present important contexts for positive identity adaptation and development (Anderson & Bigby, [<reflink idref="bib2" id="ref31">2</reflink>]; Siperstein et al., [<reflink idref="bib33" id="ref32">33</reflink>], [<reflink idref="bib32" id="ref33">32</reflink>]).</p> <p>Given the unique difficulties people with intellectual and developmental disabilities face in everyday life, what are the experiences they draw from to construct a positive sense of identity, and how might we encourage and facilitate such experiences in our communities? Using a multi‐method, tiered qualitative approach designed specifically to study identity development among adolescents and young adults who identify as having a disability, this study explored how student involvement in inclusive leadership opportunities in the school and community, such as attending Special Olympics Unified Champion Schools and participating in the U.S. Youth Ambassador Program, provided a pathway towards establishing a positive identity that seemed to transcend the constraints of a society in and by which they are marginalised.</p> <hd id="AN0164115260-3">DATA AND METHODS</hd> <p></p> <hd id="AN0164115260-4">Sample</hd> <p>The youth in this study were seven participants in Special Olympics Unified Champion Schools (UCS). See Table 1 for demographic information about the study participants.</p> <p>1 TABLE Participant information and self‐reported disabilities</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Name<xref ref-type="fn" rid="tfn1" /></th><th align="left">Age</th><th align="left">Gender</th><th align="left">Educational level</th><th align="left">Self‐reported disability</th></tr></thead><tbody valign="top"><tr><td>Thomas</td><td>18</td><td>Man</td><td>Transition program</td><td>'I have a disability—I have a disability. I forgot the name of it'.</td></tr><tr><td>Katie</td><td>18</td><td>Woman</td><td>College</td><td>'I have a disability called Hypomelanosis of Ito. It is a rare birth defect that causes streak, whorled, or mottled patches of light‐coloured skin. It also causes learning disabilities'.</td></tr><tr><td>Marcus</td><td>16</td><td>Man</td><td>High school</td><td>'What does disability mean to—well. Disability means I am—autism is like my disability'.</td></tr><tr><td>David</td><td>18</td><td>Man</td><td>Transition program</td><td>'I have High‐Functioning Autism'.</td></tr><tr><td>Shawn</td><td>18</td><td>Man</td><td>High school</td><td>'I have a disability. I have autism. I also have Tourette's. Not Tourette's syndrome but Tourette's'.</td></tr><tr><td>Alison</td><td>20</td><td>Woman</td><td>Transition program</td><td>'I have an intellectual disability called Cat Eye Syndrome'.</td></tr><tr><td>Brianna</td><td>20</td><td>Woman</td><td>Transition program</td><td>'I have an intellectual disability'.</td></tr></tbody></table> </ephtml> </p> <p>1 a All names are pseudonyms.</p> <hd id="AN0164115260-5">Context</hd> <p>UCS is an evidence‐based, school social inclusion program aimed at creating more inclusive school climates by bringing students with and without intellectual disability together. The program is made up of three components: (<reflink idref="bib1" id="ref34">1</reflink>) Unified Sports, where students with and without intellectual disability train and compete together and represent their school in an inclusive sports team; (<reflink idref="bib2" id="ref35">2</reflink>) Inclusive Youth Leadership, where students with and without intellectual disability are leaders in promoting social inclusion in their school and surrounding community through a Unified Club; and (<reflink idref="bib3" id="ref36">3</reflink>) Whole School Engagement, where staff and students hold rallies or campaigns around the ideals of inclusion through inclusive events, games, and activities, often organised by the Unified Club. Through UCS, schools and communities can improve attitudes towards and perceptions of students with disabilities, as well as facilitate a safe culture of inclusion where students with and without disability can practice and learn hard and soft skills (Siperstein et al., [<reflink idref="bib33" id="ref37">33</reflink>], [<reflink idref="bib32" id="ref38">32</reflink>]).</p> <p>In addition to their participation in UCS at their schools, students in the sample also participated in the Special Olympics U.S. Youth Ambassador program, a selective, two‐year program where students with and without intellectual and developmental disabilities learn skills in inclusive leadership, storytelling, and advocacy (for more information about the Youth Ambassador program, see Jacobs et al., [<reflink idref="bib20" id="ref39">20</reflink>]). To become U.S. Youth Ambassadors, high school students who are part of their school's UCS program apply, and if selected, complete a variety of different trainings, ranging from basics of UCS and responsibilities as a Youth Ambassador to social media and brand ambassadorship.</p> <hd id="AN0164115260-6">Data collection</hd> <p>There were three rounds of data collection. First, the participants made a series of audio diaries. After listening to one another's diaries, they participated in small group/paired interviews, followed by an individual interview to further develop emergent themes from the audio‐diaries and group interviews.</p> <hd id="AN0164115260-7">Audio diaries</hd> <p>Each student recorded four audio diary entries in which they responded to different thematic prompts regarding students' (<reflink idref="bib1" id="ref40">1</reflink>) identity in general; (<reflink idref="bib2" id="ref41">2</reflink>) disability identity; (<reflink idref="bib3" id="ref42">3</reflink>) experiences in the Special Olympics Unified Champion Schools social inclusion program; and (<reflink idref="bib4" id="ref43">4</reflink>) goals for the future. The audio diary prompts were designed to reflect key issues in the development and conceptualization of identity (Dunn & Burcaw, [<reflink idref="bib11" id="ref44">11</reflink>]; Forber‐Pratt & Zape, [<reflink idref="bib14" id="ref45">14</reflink>]; Gill, [<reflink idref="bib15" id="ref46">15</reflink>]). For example, prompts included questions such as, 'How is the world different for people with disabilities?' and 'Is there anything about your identity you want to learn more about?' Diary entries were recorded sequentially at a rate of one per week between February and March of 2020. Students received a guide containing episode prompts in written and audio format every Sunday for 4 weeks, recording and posting their audio files online. Episodes were recorded weekly to encourage regularity in recording. The audio diary entries were an average of about 5 min each and generated 2 h and 15 min total of recorded audio data.</p> <p>Audio diary methodology was chosen to emphasise the voices and experiences of young adults with disabilities and to allow them the opportunity to reflect on themes and ideas out loud. Prior research has shown that audio diaries are an accessible and engaging method to collect data from young people with disabilities (Worth, [<reflink idref="bib42" id="ref47">42</reflink>]). With consideration to the varying communication skills within our sample, we designed the audio diaries so students of all ability levels would benefit from having an extended period to consider and answer the diary prompts. During the group interviews, the participants confirmed that they liked the format of the audio diaries because it was accessible, engaging, and provided an opportunity to take the time they needed to reflect on topics of identity and disability in new ways. For example, Alison said she 'liked [the audio diary component] because I felt like I was telling a story to other people, in a way'. Several students explained that their participation in this research encouraged them to think about these topics in ways they had not previously considered.</p> <hd id="AN0164115260-8">Small group/paired interviews</hd> <p>Before the small group/paired interviews, students consented to sharing their audio diary entries with one another and listened to each other's audio diary entries. Through this exchange of entries, we hoped to encourage students to reflect on the audio diary process as well as identify commonalities between different students' experiences. Then, over Zoom video conferencing software, each student participated in a group interview with at least one other student in the sample and two members of the research team. The group interview provided an opportunity to ask students about themes that emerged from the audio diary entries. The research team developed the small group/paired interview protocol after reviewing the audio diaries to better understand students' conceptualization of disability, disability identity, and experiences of exclusion and inclusion. For example, the students were asked, 'What do you wish people knew about people with disabilities?' and 'A lot of you talked [in the audio diaries] about how being in the UCS program or part of Special Olympics has made you feel more accepted. What about UCS helps you feel accepted?'</p> <p>Three group interviews were conducted (<emph>n</emph> = 3, <emph>n</emph> = 2 and <emph>n</emph> = 2), averaging 72 min each and a total of 2 h and 48 min of recorded audio data. Groups varied in size due to scheduling limitations.</p> <hd id="AN0164115260-9">Individual interviews</hd> <p>About a month after the group interviews, the students participated in an individual interview to reflect on the themes that emerged from the prior rounds of data collection and gather additional data about their perceptions of disability and identity. As in previous rounds of data collection, the individual interview protocol was semi‐structured and developed after an initial review of data from the group interviews. The protocol was designed to allow participants to further elaborate and clarify emergent themes from the group interviews and audio diaries (Worth, [<reflink idref="bib42" id="ref48">42</reflink>]). The protocol loosely followed member checking and participatory research frameworks (Carlson, [<reflink idref="bib8" id="ref49">8</reflink>]; Worth, [<reflink idref="bib42" id="ref50">42</reflink>]), meaning that interviewers presented findings from the audio diaries and group interviews to students for reflection and to introduce additional probes that built on emerging findings. For example, questions included, 'In the podcasts and focus groups, a lot of Youth Ambassadors talked about disability as a just one part of who they are, or one component of someone's personality rather than as something that defines their identity. What do you think about that?' and 'Some Youth Ambassadors have mentioned that being in UCS has helped them become more comfortable with their disability. How has UCS changed your outlook on the way you think about your own disability?' These interviews lasted an average of 54 min, totalling 6 h and 18 min of recorded audio data.</p> <hd id="AN0164115260-10">Researcher background</hd> <p>All data were collected by two Bachelor's‐level research assistants (author 2 included) and one Master's‐level project coordinator. Distribution of diary prompts, collection of diary entries, and all interview facilitation were conducted by both research assistants, who completed several hours of internal interview and focus group trainings prior to data collection, which focused on conducting research with youth with disabilities. Data were coded by one Master's‐level graduate assistant and one Bachelor's‐level research assistant (author 2) with supervision from two PhD‐level researchers (authors 1 and 4). No members of the research team identified as having intellectual or developmental disabilities.</p> <hd id="AN0164115260-11">Data analysis</hd> <p>To allow students' data to guide the theory and findings, data were analysed through thematic analysis, an inductive analytical approach which involves iteratively reading through data transcripts and observing patterns to create a coding guide (Braun & Clarke, [<reflink idref="bib7" id="ref51">7</reflink>]; Thomas, [<reflink idref="bib38" id="ref52">38</reflink>]). Two members of the research team developed the initial coding guide after reviewing several transcripts of audio diaries and individual interviews. The initial guide was then revised through weekly discussions between the two primary coders and bi‐weekly discussions among the full research team during the coding process to come to consensus on codes and to iterate on the coding guide. In all, the coding guide underwent four revisions; after each revision, data were recoded to reflect the most updated coding guide. To further strengthen the quality of the coding process, coders reviewed each other's coded data and points of convergence and divergence in approach were discussed by the full research team to reach consensus. Two members of the research team used the final versions of the coding guide to code all the data using a qualitative data analysis software (Atlas.ti).</p> <p>The coding guide captured broad themes such as conceptualizations of disability and how disability intersects as part of their identity, as well as specific data such as stories about their experiences of being included and excluded in their communities. For example, codes included, 'self‐perceptions', 'others' perceptions of disability', 'exclusion' and 'overcoming disability'. The research team reviewed and discussed the coded data throughout the analysis process to maintain consensus and reliability, updating the coding guide if necessary, and wrote analytic memos about emerging themes. Analytic memos served to bolster the coding guide and tracked the development of themes throughout the coding process. In place of inter‐rater reliability, all coding disagreements were discussed as a group to come to consensus. The results below reflect emergent themes from the individual interviews, which were informed and developed through the previous rounds of data collection.</p> <hd id="AN0164115260-12">RESULTS</hd> <p>The findings below begin with students' descriptions of first learning of their disability in terms of the limitations it placed on them and their experiences with exclusion and marginalisation. Consistent with prior research, the labelling and stigma of disability reinforced its salience in their life experiences. Yet, they also constructed a positive identity through prosocial engagement in the school and community, reciprocal helping, and relationship building. In this sense, students claimed an identity that they said transcended societal prescriptions of disability.</p> <hd id="AN0164115260-13">Discovery of disability</hd> <p>The individuals in this study described learning about their disability in a variety of ways such as from parents, from their interactions with peers, or from teachers at school. In some cases, however, there was no memory of discovery of their disability, it simply always felt part of their identity. For example, when asked how he learned about his disability, Marcus explained, 'Well, when I was born, I had autism'. Shawn similarly explained, 'Apparently, I was diagnosed when I was three but...I never knew about it because I was so young'. Thomas, for example, noted simply that he learned of his disability 'when my dad told me about it'.</p> <p>Students who first learned of their disability in the context of interactions with peers or teachers at school described identifying certain limitations or differences compared to their classmates. Brianna, for example, learned of her disability in the sixth grade when she noticed that 'I could not catch up with the rest of my friends who did not have a disability. I was always slow at turning in work and was not really understanding anything'. She went on to describe asking a teacher what her disabilities meant, and that her teacher 'showed me a student with Down syndrome and she showed me a student with autistic [sic]'. Katie also became aware of her disability in elementary school when 'I knew that I couldn't do most of the physical activities or academic mental work in the classroom compared to my peers'. Another student, Alison, said she realised in high school that her eyes looked different from everyone else's and learned that she had Cat Eye Syndrome.</p> <p>One student, David, shared how home and school contexts combined led to his discovery and subsequent understanding of his disability. He noted, 'I learned about my disability from my parents. My parents told me that when I was little I would flap my hands and walk on my tippy toes'. He was diagnosed with high‐functioning autism in the second grade, which 'was the transition point for my disability because my teacher understood me and accommodated me once my disability was diagnosed'. Whether they learned about their disability from their parents, through school, or both, the disclosures and discoveries of difference were framed in terms of the limitations a disability put on them. The labelling of these differences as 'disability' contributed to students' feelings of marginalisation. As the next section will make clear, those labels and limitations were felt acutely by all the students, particularly in their experiences with social exclusion, bullying, and other forms of marginalisation.</p> <hd id="AN0164115260-14">Exclusion and marginalisation</hd> <p>All the students spoke about their personal experiences being bullied, excluded, or otherwise marginalised due to their disability. In some cases, they emphasised the feeling of being judged unfairly and misunderstood. Katie, for example, explained in a group interview that people who do not have disabilities 'look for the tiniest mistakes that we do, people with disabilities, and they look for, "Oh, that kid is not even done with her test. She's slow. She doesn't know what she's doing"'. Brianna similarly noted that 'I think they don't see how hard we try to fit in. They don't see what positions we're in that makes us struggle, the positions where we can't learn, where we're not able to learn or do the multitasking'. The feeling of either being put under a microscope as Katie noted, or the feeling of not being seen, as Brianna explained, are two examples of the same issue: being perceived primarily through the lens of their disability.</p> <p>Beyond feeling misunderstood due to their disability, students also widely reported social exclusion in and out of school. For example, David explained that at school, 'I felt kind of bad. I kind of felt not included'. Katie also described exclusion at school, sharing that, 'I was lonely and I remember just standing by the buildings, waiting for the first period of the day. The bullying got more serious and I seemed different than my other peers.' Marcus noted that people 'may make fun of me. Sometimes friends, people make fun of me. Not all the time, but it's sometimes'. Brianna explained, 'no one really accepted me, so I was excluded in everything in elementary [school]. I couldn't go to field day, I couldn't hang out with the friends because I had a disability and no one really accepted that'. Shawn noted that people with disabilities are often 'treated differently', explaining that 'sometimes it can be nice and other times it can be very, very distinguished. And what I mean by distinguished is very rude, cruel, ill mannered, and just—it hurts my soul to see that happen'. In a group interview, Shawn vividly described an experience where he was bullied by boys at his local swimming pool:</p> <p>I got bullied one time...I'm brave enough to talk about it. I didn't get offended because—there were two boys that were at—it was at our community pool...I went to the pool and there were these two boys. They were at—like I was stupid and what happened at that point, they came up to me and they were like, 'What's that on your ankle?' I said, 'It's a Project Lifesaver in case I were to get lost.' And then after that, they said—they pointed out and said, 'Isn't this boy retarded?'...I was honestly a little emotional at first, and then curious on why they said that.</p> <p>He further spoke about this incident in our interview with him, adding, 'I thought to myself, "Those kids are nuts. I ain't going to pay a single—I'm not going to say a single word to them for that nasty comment they directed towards me". And I couldn't believe that'. It is notable that as Shawn tells his story about this awful, stigmatising experience, he recognises bravery in his willingness to talk about it.</p> <p>While all the students shared personal stories of exclusion and mistreatment, a few made broader points about the social exclusion of people with disabilities in society. Alison noted that a disability could lead to extra difficulty getting a job: 'People with disabilities, it is harder for them to get jobs because the person hiring them might not see that they are capable for the job. People with disabilities might be treated differently because of their identity'. David explained, 'The world is different for people with disabilities. Some people with disabilities are treated with no respect and are not included'.</p> <p>It is evidently clear and consistent with existing research that these adolescents and young adults learned about and experienced their disability through the prism of limitations, social exclusion, and stigma. Yet as the following sections demonstrate, this study goes one step further by showing how students crafted identities that, while incorporating their disabilities, also transcended their disabilities through prosocial engagement with a wider community of people with and without disabilities. In doing this identity work, they constructed positive identities that helped mitigate the impact of being seen through the lens of disability.</p> <hd id="AN0164115260-15">'My disability does not define who I am'</hd> <p>While the adolescents and young adults in this study experienced social exclusion and marginalisation, they developed a sense of self that, they explained, was not defined by their disability or the negative experiences they had, but instead was shaped by the friends, opportunities, leadership roles, and other forms of engagement that made them feel included in their communities. When asked about how their disability influenced their identity, they spoke of these social connections with the world as something that provided and reaffirmed meaning and value for their sense of self and led them to conclude that disability did not define them. Katie told us, 'I'm not afraid to embrace my disability. I've overcome many obstacles to my life. I have learned that my disability does not define who I am. I live my life to the fullest by my expectations and not by others' definitions or actions'. In this sense, Katie's explanation suggests that developing an identity not defined by disability involved overcoming others' perceptions of disability as a limitation. Shawn similarly said, 'I know that I have a disability but that disability does not define who I am or my limitations and what my abilities are'. Brianna noted that when people underestimate her, she says, 'I'm just like you guys. The disability is just a part of me, but it's not going to stop me from doing the things that I need to get done'. David said, 'I have been lucky that people see me for who I am and like me as a person, not as a person with a disability' and added that 'It's not [my] whole personality'. Alison similarly said, 'I feel like having disability doesn't define who I am'. After Shawn was called the R‐word, referenced earlier, he processed the incident through this lens, thinking to himself, 'I felt like that it didn't define me. I thought, "Everybody knows how smart I am. Everybody knows how strong I am"'.</p> <hd id="AN0164115260-16">Transcending disability</hd> <p>In crafting an identity that incorporated, but ultimately transcended the social limits of disability, the youth highlighted their participation in different aspects of social life that showed their independence and care for their community. Alison, for example, took on leadership responsibilities as the communications officer for the Best Buddies program at her school. She noted that she feels a sense of pride about her leadership, especially 'considering all of the surgeries I have gone through and all the obstacles I have had to face in my life, I have accomplished so much'. Others highlighted their jobs in crafting a sense of self beyond disability. Thomas, for example, started his first audio diary by explaining that he had several jobs in his local community, and later added that he runs his own snow‐shovelling and lawncare business in his neighbourhood as a way to help others in his community. David noted that his physical therapist offered him a job when she was opening a new clinic, and that 'she really helped me learn new skills and how to be a good employee'.</p> <p>Through these experiences and relationships developed with people in the community, whether peers, customers, neighbours, or employers, the students developed a sense of identity in which their disability did not restrict, but instead facilitated the development of a sense of self that transcended limitations perceived both by those around them as well as themselves. For example, after Shawn explained that his disability did not define him, he added, 'I love helping the community too. It never defines me not being able to help anybody...I've been very helpful in the fact that I've donated some money to people who are in need of it. I go to church...there's a lot of things'. In another example, David noted that when he was a Junior in High School he took a date to the prom and 'I was nominated by the students as the Prom Prince. It was really cool'. He went again the next year, and explained, 'It was great to feel included'. These opportunities facilitated social inclusion at the school, but they did more than that. For David, such opportunities also provided the means to establish an identity that transcended the social construction of his disability as an inherent limitation.</p> <p>Others expressed similar sentiments. For example, Brianna found meaning and value in leadership opportunities through the Youth Ambassador program. She explained that 'I started going to do speeches, making sure that I was just out there being a voice for students with intellectual disabilities', adding that, 'I want to be a voice for them'. Katie shared with us, 'The thing that makes me a part of a community is as an advocate for inclusion. I try to make sure that individuals who are unable to talk for themselves have an ally who will fight for their rights'. Katie also mentioned that she now feels like, 'more of a leader, I—people notice me from all the great accomplishments I've made so far. And it's really a great feeling'. Alison also explained she had connected with parents on Facebook who have children with the same disability. She said, I have shared what it has been like for me living with Cat Eye Syndrome. It has helped them be able to learn and have a sense of what it will be like when their kid is older. Echoing Alison's experience, research has similarly shown that in terms of social inclusion for people with disabilities, participating in virtual communities can enhance a sense of positive identity as well as feelings of increased agency and self‐confidence (Parsloe, [<reflink idref="bib29" id="ref53">29</reflink>]; Tsatsou, [<reflink idref="bib40" id="ref54">40</reflink>]).</p> <p>By constructing an identity that encompassed more than disability, students symbolically shed the constraints and social limitations of disability. This was particularly salient in their descriptions of being engaged in their local communities, discussed in greater detail below.</p> <hd id="AN0164115260-17">Value of community engagement</hd> <p>The feeling of being part of a community and its resulting relationships provided meaning and fulfilment for students as they crafted identities that incorporated, but ultimately transcended, the social limitations of disability as necessarily stigmatising. The emerging adults in this study discussed the positive impact of belonging and contributing to a community, emphasising their service to others as a point of pride. They gave meaning to community loosely, referring to spaces across multiple contexts that offered the potential for inclusion, such as their participation in the Youth Ambassador program, in their schools, or in their neighbourhood. In any case, the value of community engagement provided benefits for students with disabilities at the level of identity. For example, Brianna explained in a group interview:</p> <p>It just brings light into my heart, and this kind of joy I have like, being around my community, it just feels like—it just makes me feel like I'm important and that I matter now because they accept me for who I am. I don't have to pretend like I don't have a disability, where I can be myself and just have fun with them.</p> <p>Community engagement can be a central component of one's identity in the context of prosocial relationships within a community. Some students noted, for example, the benefit of perceived visibility in their community; as David noted, 'It's great that people know me, and I think I feel really confident'. Thomas also suggested the value of community engagement for constructing identity. When he was asked, 'What do you wish people knew about you as a person with a disability?' Thomas replied, 'I like to help. If someone needs help around the community, I just help them out'.</p> <p>Beyond the benefits to the individual, students felt that service to others can create more accepting and inclusive communities, in turn benefiting people with disabilities at large. Thus, the development of a positive social identity facilitated opportunities or feelings of purpose through service to others. For Katie, advocacy for others with disabilities helped her to feel a closer connection to her community. In one audio diary, Katie shared:</p> <p>I am most proud of my community and academic achievements that I have accomplished over the last few years. I am proud of my community because this is a place where I have familiarity and outside people are acknowledging what I have been doing to create change for inclusivity and bullying.</p> <p>In a group interview, Marcus noted, 'I feel like more people want to be like me because I prosper, and I actually support...people with disabilities...I am a [role model] for a lot of people in the community'. Later in the interview, Marcus elaborated on being a role model and leader for younger students: '[Teaching younger people about disabilities] helps me be accepted. So say there are younger kids who need, here's an example, if the other kids don't know this, so I'll teach the younger kid...how to be inclusive'. Brianna put the relationship between community engagement and structured leadership opportunities (e.g., the Youth Ambassador program) plainly, reflecting that because of these experiences, 'I see [the world] different now. Because when I walk out the door, I have this bright smile and I always say in my mind, "I'm going to take on the world...I'm going to be the voice for all of those students that doesn't have their voices yet"'.</p> <hd id="AN0164115260-18">DISCUSSION</hd> <p>These results show how adolescents and young adults with intellectual and developmental disabilities, who are starting the emerging adulthood phase of the life course in which identity formation is a key component, draw from and ascribe meaning to their experiences in the school and the community to construct a positive sense of identity. While the youth in the present study described negative experiences of exclusion, marginalisation, and being viewed through the lens of limitations, they also resisted society's attempts to define them solely according to their disability, constructing a positive sense of self that claimed to transcend the social limitations of disability. Therefore, these findings contribute to our collective understanding of (a) identity development in youth with disabilities, (b) the importance of providing community engagement opportunities, and (c) the value of utilising methodologies that suit participants' communicative strengths in studies of individuals with disabilities.</p> <p>First, research about identity that includes people with disabilities typically centres disability as the focal point of a person's identity (Dunn & Burcaw, [<reflink idref="bib11" id="ref55">11</reflink>]). However, the youth in this study strongly arnettar conveyed that their disabilities were not the most salient aspect of their identity. Instead, disability was incorporated as only one component of their cohesive sense of self. This is consistent with research in which students did not mention their disability or deemphasized its salience when asked about themselves (Logeswaran et al., [<reflink idref="bib23" id="ref56">23</reflink>]). Some research has interpreted this as a lack of awareness, or an attempt to distance themselves from the stigma of disability, deny its existence, or camouflage the disability (Perry et al., [<reflink idref="bib30" id="ref57">30</reflink>]; Thoits, [<reflink idref="bib37" id="ref58">37</reflink>]). Perhaps such interpretations reflect social assumptions that disability is or ought to be the most important aspect of identity in this context. Rather, the findings here show it is important to acknowledge students' perspectives that, at least in this case, their sense of identity incorporated but ultimately expanded beyond the social limits of disability. For these youth, disability was but one component of an intersecting constellation of social forces that collectively shaped their sense of identity. It should not be assumed that youth with disabilities view their disability as a central component of who they believe themselves to be.</p> <p>Second, community engagement and leadership opportunities provided by the Special Olympics U.S. Youth Ambassador Program were key components of constructing a positive sense of identity that transcended the social constraints of disability. Of course, many factors shape identity development, and it is not possible to say with certainty that their participation in the program caused positive identity development. Nevertheless, based on these findings, and consistent with the recommendations of the participants in this study, we suggest that enhancing possibilities for adolescents and young adults with intellectual and developmental disabilities to meet people with shared interests and/or disabilities would be beneficial to positive identity formation. When we asked Alison, for example, what more can be done for people with disabilities, she said, 'get students to be able to connect with other students that have the same disability as them'. Thomas added that students could create a sports‐based school club, where 'they will learn their disability and they'll see other people, introduce themselves, and then they'll learn more about each other'. Schools are particularly well‐positioned to provide structured opportunities for community engagement through inclusive clubs, curriculum, and recreation.</p> <p>School‐based structured engagement opportunities can help students increase their self‐efficacy, address common misconceptions about disability, and encourage students to move beyond the negative stigma of disability (Wehmeyer, [<reflink idref="bib41" id="ref59">41</reflink>]). Schools can offer opportunities for meaningful leadership positions for those with disabilities with a focus on developing meaningful social connections that offer opportunities for advocacy (Anderson & Bigby, [<reflink idref="bib2" id="ref60">2</reflink>]; Tan & Adams, [<reflink idref="bib36" id="ref61">36</reflink>]). Our findings suggest that acting on these recommendations would enhance positive identity formation and perhaps lead to additional fulfilling opportunities to participate in the community as young people enter emerging adulthood.</p> <p>Notably, emerging adulthood (Arnett, [<reflink idref="bib3" id="ref62">3</reflink>], [<reflink idref="bib4" id="ref63">4</reflink>]; Arnett et al., [<reflink idref="bib5" id="ref64">5</reflink>]) overlaps with a transition out of the K‐12 education system. This may result in the loss of access to community engagement opportunities, making it critical for schools to connect families with organisations that offer new opportunities for social relationships and leadership (McKenzie et al., [<reflink idref="bib24" id="ref65">24</reflink>]; Wehmeyer, [<reflink idref="bib41" id="ref66">41</reflink>]). By facilitating structured opportunities for community engagement, collaborative partnerships between schools, families, and organisations can help individuals with disabilities develop positive identity, increased self‐efficacy, and a cohesive sense of self as they transition into adulthood. As demonstrated in the present study, these experiences, in turn, can further encourage engagement, advocacy, and social connection to unstructured opportunities to participate in community activities more generally.</p> <p>Third, methodologically this study shows the value of utilising data collection techniques that match participants communicative strengths, particularly when conducting research with individuals with disabilities. The richness of the data reflects the iterative, sequential process of data collection that each step of the way gave the participants an opportunity to reflect and expand upon their initial responses. Furthermore, the sequence of data collection procedures allowed for the participants and researchers to develop familiarity and rapport, likely giving participants the feeling that they could be open and honest about their lives. The study participants had opportunities to provide feedback about the data collection methods and they expressed that the tiered qualitative approach, particularly the audio diary component, was accessible, engaging, and allowed ample time for reflection and self‐expression. For example, to Shawn, the audio diary format felt like a safe space to explore vulnerable topics, as opposed to interview or other methods: 'I felt protected once I recorded it, so I didn't have to worry about recording. I felt like I could just say what I needed to say rather than show myself'. Procedures such as these, informed by a participatory approach, were intended to ensure that the voices and perspectives of emerging adults with disabilities were accurately and respectfully represented. Given the importance of conducting research <emph>with</emph>, rather than <emph>on</emph>, individuals from marginalised communities, researchers should continue to use creative methods of data collection to capture their perspectives.</p> <hd id="AN0164115260-19">Limitations and future directions</hd> <p>Findings should be interpreted in the context of some limitations. The intent of this study was not to generalise to all students with disabilities, but rather, to utilise a purposive sample to better understand how adolescents and young adults with disabilities may draw from their experiences to construct a positive sense of identity. The participants reported having a limited range of disabilities. As such, the present findings may not reflect positive identity development experiences across all types of disabilities (e.g., physical disabilities and more severe intellectual disabilities). However, the sample size and targeted scope of the study allowed an in‐depth and nuanced understanding of positive identity development in individuals with intellectual and developmental disabilities, which likely would not have been captured with such richness in a larger‐scale quantitative study.</p> <p>While interviews were conducted with youth with disabilities in large part to member check and confirm research findings, future research should continue to include youth voice directly in all phases of the research process, not limiting participation to data production and collection. In addition, future research should further explore how more people with a wider range of disabilities may construct a positive sense of identity. This could be done using a qualitative approach, like what was used in this study, or could be supplemented with quantitative methods. It may be particularly helpful to continue to explore the relationship between community engagement and positive identity development, including ways to improve community engagement opportunities. In addition, the nature of inclusive activities where youth with and without disabilities work closely together to improve their schools and communities may impact adolescents in emerging adulthood. Future research could explore how the social relationships among youth with and without disabilities developed through inclusive leadership experiences can shape identity development for young adults.</p> <hd id="AN0164115260-20">ACKNOWLEDGEMENTS</hd> <p>This research was supported by Special Olympics, Inc. and the U.S. Department of Education under grant H380W160001. The authors would like to thank Holly Jacobs, Emily Van Gaasbeek, Key Duckworth, and Afrina Rohani for their contributions to this manuscript during the data collection and analysis phases of the project.</p> <hd id="AN0164115260-21">CONFLICT OF INTEREST STATEMENT</hd> <p>The authors have no conflicts of interest to disclose.</p> <hd id="AN0164115260-22">DATA AVAILABILITY STATEMENT</hd> <p>Research data are not shared.</p> <ref id="AN0164115260-23"> <title> Footnotes </title> <blist> <bibl id="bib1" idref="ref1" type="bt">1</bibl> <bibtext> Funding Information This research was supported by Special Olympics, Inc. and the U.S. Department of Education under grant H380W160001).</bibtext> </blist> </ref> <ref id="AN0164115260-24"> <title> REFERENCES </title> <blist> <bibtext> Amado, A. N., Stancliffe, R. J., McCarron, M., & McCallion, P. (2013). Social inclusion and community participation of individuals with intellectual/developmental disabilities. 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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Positive Identity Development through Community Engagement among Youth with Intellectual and Developmental Disabilities
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Rodriquez%2C+Jason%22">Rodriquez, Jason</searchLink><br /><searchLink fieldCode="AR" term="%22Gupta%2C+Anmol%22">Gupta, Anmol</searchLink><br /><searchLink fieldCode="AR" term="%22Ballard%2C+Staci+C%2E%22">Ballard, Staci C.</searchLink><br /><searchLink fieldCode="AR" term="%22Siperstein%2C+Gary+N%2E%22">Siperstein, Gary N.</searchLink>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. Jul 2023 36(4):758-767.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 10
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2023
– Name: SourceSuprt
  Label: Sponsoring Agency
  Group: SrcSuprt
  Data: Department of Education (ED)
– Name: NumberContract
  Label: Contract Number
  Group: NumCntrct
  Data: H380W160001
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Youth%22">Youth</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Developmental+Disabilities%22">Developmental Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Self+Concept%22">Self Concept</searchLink><br /><searchLink fieldCode="DE" term="%22Self+Esteem%22">Self Esteem</searchLink><br /><searchLink fieldCode="DE" term="%22Individual+Development%22">Individual Development</searchLink><br /><searchLink fieldCode="DE" term="%22Community+Involvement%22">Community Involvement</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Attitudes%22">Social Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Attitudes%22">Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Leadership+Role%22">Leadership Role</searchLink><br /><searchLink fieldCode="DE" term="%22Research+Needs%22">Research Needs</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/jar.13091
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1360-2322<br />1468-3148
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Identity development in individuals with disabilities is often negatively impacted by exclusion, marginalisation, and stigma. However, meaningful opportunities for community engagement can serve as one pathway towards establishing positive identity. This pathway is further examined in the present study. Methods: Researchers used a tiered, multi-method, qualitative methodology consisting of audio diaries, group interviews, and individual interviews with seven youth (ages 16-20) with intellectual and developmental disabilities, recruited through the Special Olympics U.S. Youth Ambassador Program. Results: Participants' identities incorporated disability while simultaneously transcending the social limits of disability. Participants viewed disability as one aspect of their broader identity, shaped by leadership and engagement experiences such as those offered by the Youth Ambassador Program. Conclusions: Findings have implications for understanding identity development in youth with disabilities, the importance of community engagement and structured leadership opportunities, and the value of tailoring qualitative methodologies to the subject of the research.
– Name: AbstractInfo
  Label: Abstractor
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  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2023
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1379834
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1379834
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/jar.13091
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 10
        StartPage: 758
    Subjects:
      – SubjectFull: Youth
        Type: general
      – SubjectFull: Intellectual Disability
        Type: general
      – SubjectFull: Developmental Disabilities
        Type: general
      – SubjectFull: Self Concept
        Type: general
      – SubjectFull: Self Esteem
        Type: general
      – SubjectFull: Individual Development
        Type: general
      – SubjectFull: Community Involvement
        Type: general
      – SubjectFull: Social Attitudes
        Type: general
      – SubjectFull: Attitudes
        Type: general
      – SubjectFull: Leadership Role
        Type: general
      – SubjectFull: Research Needs
        Type: general
    Titles:
      – TitleFull: Positive Identity Development through Community Engagement among Youth with Intellectual and Developmental Disabilities
        Type: main
  BibRelationships:
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      – PersonEntity:
          Name:
            NameFull: Rodriquez, Jason
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            NameFull: Gupta, Anmol
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            NameFull: Ballard, Staci C.
      – PersonEntity:
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            NameFull: Siperstein, Gary N.
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            – D: 01
              M: 07
              Type: published
              Y: 2023
          Identifiers:
            – Type: issn-print
              Value: 1360-2322
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              Value: 1468-3148
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              Value: 36
            – Type: issue
              Value: 4
          Titles:
            – TitleFull: Journal of Applied Research in Intellectual Disabilities
              Type: main
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