Health Tomorrow: Interdisciplinarity and Internationality, 2013
Because web-based campaigns are an important part of health promotion campaigns for youth, this r... more Because web-based campaigns are an important part of health promotion campaigns for youth, this research examines sexual health websites aimed at youth and explores the messages on HIV/AIDS for their relevance and accessibility for youth with disabilities. The researchers’ underlying understanding of disability is that it is socially constructed and that people with disabilities experience social exclusion. We used a directed content analysis method to analyze 21 websites that met our inclusion criteria based on our indicators of accessibility and relevance and for their key messages. We found that the messaging across all sites was highly consistent: sex-positive, gay-positive, and non-judgmental about youth sexual expression. However, none of the prevention information specifically considered mobility, verbal and cognitive disability, participation and information barriers faced by youth with disabilities, or their heightened sexual vulnerability. Only one site depicted disability...
This paper draws from a narrative ethnography of women members of disabled people's organizat... more This paper draws from a narrative ethnography of women members of disabled people's organizations (DPOs) in Accra, Ghana. Through recounting their autobiographical stories, elicited in multiple interviews, it explores how they navigate tensions among disability status, material survival, family belonging and religious participation Finding themselves neither fully acknowledged in family roles nor as religious community members, disabled women struggle to carve out spaces of self-determination and well-being between families and religious institutions, and between their developing aspirations and the circumscribed options available to them at the intersections of poverty, gender and disability. Women draw from multiple experiences, communities and discourses to interpret disability in complex and varied ways, not solely within the "moral models" often attributed to African cultures. Utilizing three biographical narratives from a 2003-2004 qualitative study, this paper shows how urban Ghanaian women with disabilities work to redefine themselves as social participants, and indeed as fully human, through engagement with religion. Implications for disability activism are discussed in the paper's conclusion.
Journal of Empirical Research on Human Research Ethics: An International Journal, 2012
We examine ethical issues that emerged during a community-based participatory research (CBPR) stu... more We examine ethical issues that emerged during a community-based participatory research (CBPR) study in Toronto, Canada, exploring sexual health attitudes and practices among lesbian, gay, bisexual, trans, queer, and questioning (LGBTQ) young people (ages 17–26) labeled with intellectual disabilities. These ethical concerns included: (1) managing the risk of coercion, (2) consent to participate in the study, (3) issues of confidentiality and disclosure, (4) balancing beneficence with self-determination, and (5) role conflict for researcher-practitioners who participate in CBPR projects. Incorporating critical disability perspectives and a heightened awareness of professional role conflict into CBPR practices has the potential to foster development of more inclusive and accessible sexual health initiatives and research environments.
Previous scholarship shows that women with disabilities are excluded from national and transnatio... more Previous scholarship shows that women with disabilities are excluded from national and transnational economic development strategies and depicted, if at all, as passive victims and subjects of charity. In Sub-Saharan Africa, disabled women tend to occupy marginal positions in the social and economic milieux of major cities. This feminist narrative ethnography draws upon fifteen months of collaborative, cross-cultural fieldwork in Accra, Ghana. It confronts prior misrepresentations by constructing detailed narrative portraits and “poetic transcriptions” (Glesne, 1997) derived from life-story interviews with thirteen Ghanaian women with disabilities who reside in Ghana’s capital and its suburbs. Through narrative reconstructions of women’s stories, it explores how interlocking social and economic structures marginalize girls and women with disabilities. Disabled women’s social personhood is undermined, for example, through denial of family roles and entitlements; provision of inferior education and work training in unsustainable trades; and expressions of pity or contempt by passers-by. The portraits highlight the dangers, hardships and diminished personhood to which disabled women are subjected through these marginalizing processes. They foreground disabled women’s perspectives and their persistent agency in knitting themselves back into the fabric of their families, neighborhoods, and religious communities. They also explore the roles that disability self-help and advocacy groups play in women’s lives by enabling them to form friendships and access material support. Through participating in such groups, women begin to question the inevitability of their exclusion, reconstruct themselves as worthy and respectable persons, and strengthen their claims on family and society.
Activism is a practice of, or orientation toward, taking action, often implying the context of a ... more Activism is a practice of, or orientation toward, taking action, often implying the context of a social or political movement. Although activism emphasizes collective action, an individual and his or her actions may be considered “activist” depending on their relationship to larger struggles. Disability activism refers to “collective political action by and for people with disabilities” (Barnes and Mercer 2010, 176), which contributes to “the continuing struggle of disabled people to gain a voice and to shape our destinies” (Longmore 2003, 231). The word “advocacy” is sometimes used interchangeably with activism, since a person may advocate on behalf of others. But although some scholars and activists include advocacy by parents and other nondisabled allies under the category of disability activism, leadership by disabled people in activism is crucial to collective autonomy.
Keywords for Disability Studies. (2015). United Kingdom: NYU Press. Chapter 6, pp. 21-25
"Young lesbian, gay, bisexual, and transgender (LGBT) people labeled with intellectual disabiliti... more "Young lesbian, gay, bisexual, and transgender (LGBT) people labeled with intellectual disabilities have unique sexual health needs that are not being met. Denial by others of their right to pleasure and the exercise of heightened external control over their sexuality are commonplace. Current research indicates that these youth are at heightened risk for compromised sexual health. This study aimed to explore the ways in which social and environmental conditions influence vulnerability to
adverse sexual health outcomes for this population. We used a community-based research approach to conduct qualitative interviews and focus groups with 10 young LGBT people (aged 17–26) labeled with intellectual disabilities. Participants reported multiple limitations on their autonomy that resulted in having sex in places where they did not feel comfortable and were unlikely to practice safer sex. Attempts by authority figures to protect youth through limits on their autonomy may be unintentionally leading to negative sexual health outcomes."
Background: Accessible, culturally relevant data collection tools to assess the sexual health
kno... more Background: Accessible, culturally relevant data collection tools to assess the sexual health knowledge of lesbian, gay, bisexual, trans, queer and questioning (LGBTQ) young people labelled with intellectual disabilities are sparse. Materials and Methods: Using community-based participatory research (CBPR) we piloted a variety of interactive activities designed to assess the sexual health knowledge and decision making skills of LGBTQ young people with intellectual disabilities. Results: Posters created by youth participants suggested substantial sexual health knowledge and empowerment, while individual knowledge assessment scores indicated a range in understanding of risks and strategies to avoid pregnancy, HIV and herpes. Conclusions: These findings reinforce the importance of using multiple strategies to assess sexual knowledge with this population. Creative evaluation strategies catering to the cultural specificities, sexual experiences, and cognitive abilities of diverse youth help to clarify gaps in knowledge and areas for renewed attention. Keywords: HIV/AIDS; community-based participatory research; intellectual disabilities; lesbian, gay, bisexual, and trans (LGBT); sexual health Authors: Ciann Wilson, Zack Marshall, Sarah Flicker, Alex McClelland, Tess Vo, Denise Nepveux, Devon Proudfoot, Stephanie Nixon, Trevor Hart
Ghana’s disability movement groups are currently re-evaluating the roles that gender plays in the... more Ghana’s disability movement groups are currently re-evaluating the roles that gender plays in their activities and have put policies in place to ensure gender equity. Among Disabled People’s Organizations (DPOs) in Ghana, men outnumber women in leadership positions and tend to occupy higher-status and more decisive positions than women. This is a common situation in disability movements around the world, despite women’s immense contributions. Beyond an anecdotal level, little is known about the experiences of women in DPOs as they seek to develop leadership skills, carry out leadership roles, and fully contribute to their organizations. And little is known about the culture within DPOs and how it affects women. In this presentation, we offer the preliminary results of a 2010 qualitative research study based on interviews with a number of women leaders in Ghana’s disability movement. Our purpose was to offer disability advocacy groups in Ghana (and beyond) some insights from the experiences of women in leadership and suggestions about changes on organizational levels that would help to foster women's contributions.
Because web-based campaigns are an important part of health promotion campaigns for youth, this r... more Because web-based campaigns are an important part of health promotion campaigns for youth, this research examines sexual health websites aimed at youth and explores the messages on HIV/AIDS for their relevance and accessibility for youth with disabilities. The researchers' underlying understanding of disability is that it is socially constructed and that people with disabilities experience social exclusion. We used a directed content analysis method to analyze 21 websites that met our inclusion criteria based on our indicators of accessibility and relevance and for their key messages. We found that the messaging across all sites was highly consistent: sex-positive, gaypositive, and non-judgmental about youth sexual expression. However, none of the prevention information specifically considered mobility, verbal and cognitive disability, participation and information barriers faced by youth with disabilities, or their heightened sexual vulnerability. Only one site depicted disability in images and none depicted disability and sexuality. There is a clear need to better understand the sexual health information needs of youth with disabilities and to develop safe sex information that is relevant and accessible to them.
This paper draws from a narrative ethnography of women members of disabled people's organizations... more This paper draws from a narrative ethnography of women members of disabled people's organizations (DPOs) in Accra, Ghana. Through recounting their autobiographical stories, elicited in multiple interviews, it explores how they navigate tensions among disability status, material survival, family belonging and religious participation Finding themselves neither fully acknowledged in family roles nor as religious community members, disabled women struggle to carve out spaces of self-determination and well-being between families and religious institutions, and between their developing aspirations and the circumscribed options available to them at the intersections of poverty, gender and disability. Women draw from multiple experiences, communities and discourses to interpret disability in complex and varied ways, not solely within the "moral models" often attributed to African cultures. Utilizing three biographical narratives from a 2003-2004 qualitative study, this paper shows how urban Ghanaian women with disabilities work to redefine themselves as social participants, and indeed as fully human, through engagement with religion. Implications for disability activism are discussed in the paper's conclusion.
Disability studies has shown how therapeutic professionals and people with disabilities occupy op... more Disability studies has shown how therapeutic professionals and people with disabilities occupy opposite sides of a deep cultural divide, one that arti cially bisects normalcy from 'abnormalcy'. The philosophy of political subjectivity provides an opportunity to analyse the fraught nexus that exists between institutions and those who navigate them as professionals and 'clients'. Our essay seeks to theorise the subject positions that emerge as a result of this often volatile intersection by offering up four critical vignettes: (1) an analysis of the systems and networks that characterise disabled transport within the Chicago Transit Authority; (2) speech therapy training and clinical practices designed for those whose articulation is diagnosed as inferior; (3) an African American clinician's analysis of disability taxonomies applied to minority wards of the state of Illinois; and (4) an analysis of scapegoating at the national level in a class-action law suit regarding the 'missed' diagnosis of disability prior to birth. These overlapping cross-disability accounts seek to enact boundary crossings as the foundation for a new Chicago Model of interdisciplinary disability studies. The essay concludes with a discussion of the need to broaden disability coalitions as the terrain of political struggle becomes increasingly diverse and complex.
Health Tomorrow: Interdisciplinarity and Internationality, 2013
Because web-based campaigns are an important part of health promotion campaigns for youth, this r... more Because web-based campaigns are an important part of health promotion campaigns for youth, this research examines sexual health websites aimed at youth and explores the messages on HIV/AIDS for their relevance and accessibility for youth with disabilities. The researchers’ underlying understanding of disability is that it is socially constructed and that people with disabilities experience social exclusion. We used a directed content analysis method to analyze 21 websites that met our inclusion criteria based on our indicators of accessibility and relevance and for their key messages. We found that the messaging across all sites was highly consistent: sex-positive, gay-positive, and non-judgmental about youth sexual expression. However, none of the prevention information specifically considered mobility, verbal and cognitive disability, participation and information barriers faced by youth with disabilities, or their heightened sexual vulnerability. Only one site depicted disability...
This paper draws from a narrative ethnography of women members of disabled people's organizat... more This paper draws from a narrative ethnography of women members of disabled people's organizations (DPOs) in Accra, Ghana. Through recounting their autobiographical stories, elicited in multiple interviews, it explores how they navigate tensions among disability status, material survival, family belonging and religious participation Finding themselves neither fully acknowledged in family roles nor as religious community members, disabled women struggle to carve out spaces of self-determination and well-being between families and religious institutions, and between their developing aspirations and the circumscribed options available to them at the intersections of poverty, gender and disability. Women draw from multiple experiences, communities and discourses to interpret disability in complex and varied ways, not solely within the "moral models" often attributed to African cultures. Utilizing three biographical narratives from a 2003-2004 qualitative study, this paper shows how urban Ghanaian women with disabilities work to redefine themselves as social participants, and indeed as fully human, through engagement with religion. Implications for disability activism are discussed in the paper's conclusion.
Journal of Empirical Research on Human Research Ethics: An International Journal, 2012
We examine ethical issues that emerged during a community-based participatory research (CBPR) stu... more We examine ethical issues that emerged during a community-based participatory research (CBPR) study in Toronto, Canada, exploring sexual health attitudes and practices among lesbian, gay, bisexual, trans, queer, and questioning (LGBTQ) young people (ages 17–26) labeled with intellectual disabilities. These ethical concerns included: (1) managing the risk of coercion, (2) consent to participate in the study, (3) issues of confidentiality and disclosure, (4) balancing beneficence with self-determination, and (5) role conflict for researcher-practitioners who participate in CBPR projects. Incorporating critical disability perspectives and a heightened awareness of professional role conflict into CBPR practices has the potential to foster development of more inclusive and accessible sexual health initiatives and research environments.
Previous scholarship shows that women with disabilities are excluded from national and transnatio... more Previous scholarship shows that women with disabilities are excluded from national and transnational economic development strategies and depicted, if at all, as passive victims and subjects of charity. In Sub-Saharan Africa, disabled women tend to occupy marginal positions in the social and economic milieux of major cities. This feminist narrative ethnography draws upon fifteen months of collaborative, cross-cultural fieldwork in Accra, Ghana. It confronts prior misrepresentations by constructing detailed narrative portraits and “poetic transcriptions” (Glesne, 1997) derived from life-story interviews with thirteen Ghanaian women with disabilities who reside in Ghana’s capital and its suburbs. Through narrative reconstructions of women’s stories, it explores how interlocking social and economic structures marginalize girls and women with disabilities. Disabled women’s social personhood is undermined, for example, through denial of family roles and entitlements; provision of inferior education and work training in unsustainable trades; and expressions of pity or contempt by passers-by. The portraits highlight the dangers, hardships and diminished personhood to which disabled women are subjected through these marginalizing processes. They foreground disabled women’s perspectives and their persistent agency in knitting themselves back into the fabric of their families, neighborhoods, and religious communities. They also explore the roles that disability self-help and advocacy groups play in women’s lives by enabling them to form friendships and access material support. Through participating in such groups, women begin to question the inevitability of their exclusion, reconstruct themselves as worthy and respectable persons, and strengthen their claims on family and society.
Activism is a practice of, or orientation toward, taking action, often implying the context of a ... more Activism is a practice of, or orientation toward, taking action, often implying the context of a social or political movement. Although activism emphasizes collective action, an individual and his or her actions may be considered “activist” depending on their relationship to larger struggles. Disability activism refers to “collective political action by and for people with disabilities” (Barnes and Mercer 2010, 176), which contributes to “the continuing struggle of disabled people to gain a voice and to shape our destinies” (Longmore 2003, 231). The word “advocacy” is sometimes used interchangeably with activism, since a person may advocate on behalf of others. But although some scholars and activists include advocacy by parents and other nondisabled allies under the category of disability activism, leadership by disabled people in activism is crucial to collective autonomy.
Keywords for Disability Studies. (2015). United Kingdom: NYU Press. Chapter 6, pp. 21-25
"Young lesbian, gay, bisexual, and transgender (LGBT) people labeled with intellectual disabiliti... more "Young lesbian, gay, bisexual, and transgender (LGBT) people labeled with intellectual disabilities have unique sexual health needs that are not being met. Denial by others of their right to pleasure and the exercise of heightened external control over their sexuality are commonplace. Current research indicates that these youth are at heightened risk for compromised sexual health. This study aimed to explore the ways in which social and environmental conditions influence vulnerability to
adverse sexual health outcomes for this population. We used a community-based research approach to conduct qualitative interviews and focus groups with 10 young LGBT people (aged 17–26) labeled with intellectual disabilities. Participants reported multiple limitations on their autonomy that resulted in having sex in places where they did not feel comfortable and were unlikely to practice safer sex. Attempts by authority figures to protect youth through limits on their autonomy may be unintentionally leading to negative sexual health outcomes."
Background: Accessible, culturally relevant data collection tools to assess the sexual health
kno... more Background: Accessible, culturally relevant data collection tools to assess the sexual health knowledge of lesbian, gay, bisexual, trans, queer and questioning (LGBTQ) young people labelled with intellectual disabilities are sparse. Materials and Methods: Using community-based participatory research (CBPR) we piloted a variety of interactive activities designed to assess the sexual health knowledge and decision making skills of LGBTQ young people with intellectual disabilities. Results: Posters created by youth participants suggested substantial sexual health knowledge and empowerment, while individual knowledge assessment scores indicated a range in understanding of risks and strategies to avoid pregnancy, HIV and herpes. Conclusions: These findings reinforce the importance of using multiple strategies to assess sexual knowledge with this population. Creative evaluation strategies catering to the cultural specificities, sexual experiences, and cognitive abilities of diverse youth help to clarify gaps in knowledge and areas for renewed attention. Keywords: HIV/AIDS; community-based participatory research; intellectual disabilities; lesbian, gay, bisexual, and trans (LGBT); sexual health Authors: Ciann Wilson, Zack Marshall, Sarah Flicker, Alex McClelland, Tess Vo, Denise Nepveux, Devon Proudfoot, Stephanie Nixon, Trevor Hart
Ghana’s disability movement groups are currently re-evaluating the roles that gender plays in the... more Ghana’s disability movement groups are currently re-evaluating the roles that gender plays in their activities and have put policies in place to ensure gender equity. Among Disabled People’s Organizations (DPOs) in Ghana, men outnumber women in leadership positions and tend to occupy higher-status and more decisive positions than women. This is a common situation in disability movements around the world, despite women’s immense contributions. Beyond an anecdotal level, little is known about the experiences of women in DPOs as they seek to develop leadership skills, carry out leadership roles, and fully contribute to their organizations. And little is known about the culture within DPOs and how it affects women. In this presentation, we offer the preliminary results of a 2010 qualitative research study based on interviews with a number of women leaders in Ghana’s disability movement. Our purpose was to offer disability advocacy groups in Ghana (and beyond) some insights from the experiences of women in leadership and suggestions about changes on organizational levels that would help to foster women's contributions.
Because web-based campaigns are an important part of health promotion campaigns for youth, this r... more Because web-based campaigns are an important part of health promotion campaigns for youth, this research examines sexual health websites aimed at youth and explores the messages on HIV/AIDS for their relevance and accessibility for youth with disabilities. The researchers' underlying understanding of disability is that it is socially constructed and that people with disabilities experience social exclusion. We used a directed content analysis method to analyze 21 websites that met our inclusion criteria based on our indicators of accessibility and relevance and for their key messages. We found that the messaging across all sites was highly consistent: sex-positive, gaypositive, and non-judgmental about youth sexual expression. However, none of the prevention information specifically considered mobility, verbal and cognitive disability, participation and information barriers faced by youth with disabilities, or their heightened sexual vulnerability. Only one site depicted disability in images and none depicted disability and sexuality. There is a clear need to better understand the sexual health information needs of youth with disabilities and to develop safe sex information that is relevant and accessible to them.
This paper draws from a narrative ethnography of women members of disabled people's organizations... more This paper draws from a narrative ethnography of women members of disabled people's organizations (DPOs) in Accra, Ghana. Through recounting their autobiographical stories, elicited in multiple interviews, it explores how they navigate tensions among disability status, material survival, family belonging and religious participation Finding themselves neither fully acknowledged in family roles nor as religious community members, disabled women struggle to carve out spaces of self-determination and well-being between families and religious institutions, and between their developing aspirations and the circumscribed options available to them at the intersections of poverty, gender and disability. Women draw from multiple experiences, communities and discourses to interpret disability in complex and varied ways, not solely within the "moral models" often attributed to African cultures. Utilizing three biographical narratives from a 2003-2004 qualitative study, this paper shows how urban Ghanaian women with disabilities work to redefine themselves as social participants, and indeed as fully human, through engagement with religion. Implications for disability activism are discussed in the paper's conclusion.
Disability studies has shown how therapeutic professionals and people with disabilities occupy op... more Disability studies has shown how therapeutic professionals and people with disabilities occupy opposite sides of a deep cultural divide, one that arti cially bisects normalcy from 'abnormalcy'. The philosophy of political subjectivity provides an opportunity to analyse the fraught nexus that exists between institutions and those who navigate them as professionals and 'clients'. Our essay seeks to theorise the subject positions that emerge as a result of this often volatile intersection by offering up four critical vignettes: (1) an analysis of the systems and networks that characterise disabled transport within the Chicago Transit Authority; (2) speech therapy training and clinical practices designed for those whose articulation is diagnosed as inferior; (3) an African American clinician's analysis of disability taxonomies applied to minority wards of the state of Illinois; and (4) an analysis of scapegoating at the national level in a class-action law suit regarding the 'missed' diagnosis of disability prior to birth. These overlapping cross-disability accounts seek to enact boundary crossings as the foundation for a new Chicago Model of interdisciplinary disability studies. The essay concludes with a discussion of the need to broaden disability coalitions as the terrain of political struggle becomes increasingly diverse and complex.
The Journal of Literary & Cultural Disability Studies (JLCDS) focuses on cultural and especially ... more The Journal of Literary & Cultural Disability Studies (JLCDS) focuses on cultural and especially literary representations of disability. Containing a wide variety of textual analyses that are informed by disability theory and, by extension, experiences of disability, it is essential reading for scholars whose work concentrates on the portrayal of disability in literature. More broadly, it is instrumental in the interdisciplinarity of literary studies, cultural studies, and disability studies.
Ph.D. Dissertation, University of Illinois at Chicago, 2009
Previous scholarship shows that women with disabilities are excluded from national and transnatio... more Previous scholarship shows that women with disabilities are excluded from national and transnational economic development strategies and depicted, if at all, as passive victims and subjects of charity. In Sub-Saharan Africa, disabled women tend to occupy marginal positions in the social and economic milieux of major cities. This feminist narrative ethnography draws upon fifteen months of collaborative, cross-cultural fieldwork in Accra, Ghana. It confronts prior misrepresentations by constructing detailed narrative portraits and “poetic transcriptions” (Glesne, 1997) derived from life-story interviews with thirteen Ghanaian women with disabilities who reside in Ghana’s capital and its suburbs. Through narrative reconstructions of women’s stories, it explores how interlocking social and economic structures marginalize girls and women with disabilities. Disabled women’s social personhood is undermined, for example, through denial of family roles and entitlements; provision of inferior education and work training in unsustainable trades; and expressions of pity or contempt by passers-by. The portraits highlight the dangers, hardships and diminished personhood to which disabled women are subjected through these marginalizing processes. They foreground disabled women’s perspectives and their persistent agency in knitting themselves back into the fabric of their families, neighborhoods, and religious communities. They also explore the roles that disability self-help and advocacy groups play in women’s lives by enabling them to form friendships and access material support. Through participating in such groups, women begin to question the inevitability of their exclusion, reconstruct themselves as worthy and respectable persons, and strengthen their claims on family and society.
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Papers by Denise Nepveux
Keywords for Disability Studies. (2015). United Kingdom: NYU Press.
Chapter 6, pp. 21-25
ISBN: 9781479841158, 1479841153
adverse sexual health outcomes for this population. We used a community-based research approach to conduct qualitative interviews and focus groups with 10 young LGBT people (aged 17–26) labeled with intellectual disabilities. Participants reported multiple limitations on their autonomy that resulted in having sex in places where they did not feel comfortable and were unlikely to practice safer sex. Attempts by authority figures to protect youth through limits on their autonomy may be unintentionally leading to negative sexual health outcomes."
knowledge of lesbian, gay, bisexual, trans, queer and questioning (LGBTQ) young people labelled with intellectual disabilities are sparse.
Materials and Methods: Using community-based participatory research (CBPR) we piloted a variety of interactive activities designed to assess the sexual health knowledge and decision making skills of LGBTQ young people with intellectual disabilities.
Results: Posters created by youth participants suggested substantial sexual health knowledge and empowerment, while individual knowledge assessment scores indicated a range in understanding of risks and strategies to avoid pregnancy, HIV and herpes.
Conclusions: These findings reinforce the importance of using multiple strategies to assess sexual knowledge with this population. Creative evaluation strategies catering to the cultural specificities, sexual experiences, and cognitive abilities of diverse youth help to clarify gaps in knowledge and areas for renewed attention.
Keywords: HIV/AIDS; community-based participatory research; intellectual disabilities; lesbian, gay, bisexual, and trans (LGBT); sexual health
Authors: Ciann Wilson, Zack Marshall, Sarah Flicker, Alex McClelland, Tess Vo, Denise Nepveux, Devon Proudfoot, Stephanie Nixon, Trevor Hart
Keywords for Disability Studies. (2015). United Kingdom: NYU Press.
Chapter 6, pp. 21-25
ISBN: 9781479841158, 1479841153
adverse sexual health outcomes for this population. We used a community-based research approach to conduct qualitative interviews and focus groups with 10 young LGBT people (aged 17–26) labeled with intellectual disabilities. Participants reported multiple limitations on their autonomy that resulted in having sex in places where they did not feel comfortable and were unlikely to practice safer sex. Attempts by authority figures to protect youth through limits on their autonomy may be unintentionally leading to negative sexual health outcomes."
knowledge of lesbian, gay, bisexual, trans, queer and questioning (LGBTQ) young people labelled with intellectual disabilities are sparse.
Materials and Methods: Using community-based participatory research (CBPR) we piloted a variety of interactive activities designed to assess the sexual health knowledge and decision making skills of LGBTQ young people with intellectual disabilities.
Results: Posters created by youth participants suggested substantial sexual health knowledge and empowerment, while individual knowledge assessment scores indicated a range in understanding of risks and strategies to avoid pregnancy, HIV and herpes.
Conclusions: These findings reinforce the importance of using multiple strategies to assess sexual knowledge with this population. Creative evaluation strategies catering to the cultural specificities, sexual experiences, and cognitive abilities of diverse youth help to clarify gaps in knowledge and areas for renewed attention.
Keywords: HIV/AIDS; community-based participatory research; intellectual disabilities; lesbian, gay, bisexual, and trans (LGBT); sexual health
Authors: Ciann Wilson, Zack Marshall, Sarah Flicker, Alex McClelland, Tess Vo, Denise Nepveux, Devon Proudfoot, Stephanie Nixon, Trevor Hart