Las relaciones afectivo-sexuales de las personas con discapacidad intelectual: apoyos y barreras desde la perspectiva de personas con discapacidad intelectual
Resumen Introducción: Esta investigación se centra en las barreras y los apoyos que inciden en el desarrollo de las relaciones afectivo-sexuales percibidos por un grupo de personas con discapacidad intelectual. Método: Participaron en el estudio 14 adultos con discapacidad intelectual y se realizaron grupos de discusión en cuatro sesiones. Estas fueron grabadas y transcritas. Los resultados se agruparon en 7 temas: política, profesionales y servicios, familias, amistades, pareja, la propia persona con discapacidad y sociedad. Resultados: Los participantes critican el desconocimiento de la política hacia la discapacidad; resaltan que no reciben suficiente apoyo de los profesionales y tachan de limitadoras las normas de los servicios de apoyo; las familias son percibidas como condicionantes de la sexualidad; destacan la dificultad para establecer amistades y denuncian los prejuicios de la sociedad, entre otras. Discusión: En los últimos años se ha producido un cambio en el paradigma que reconoce el derecho de las personas con discapacidad intelectual a tener relaciones íntimas, pero estas siguen enfrentándose a la negación de su “ciudadanía íntima”. Se propone el análisis y cambios en diferentes ámbitos de la vida de las personas, en favor de un mayor respeto de los derechos de la Convención por los Derechos de las Personas con Discapacidad (CDPD), especialmente de la sexualidad.
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Azzopardi-Lane, C. y Callus, A. M. (2014). Constructing sexual identities: People with intellectual disability talking about sexuality. British Journal of Learning Disabilities, 43(1), 32-37. https://doi.org/10.1111/bld.12083
Azzopardi Lane, C. L., Cambridge, P. y Murphy, G. (2019). Muted voices: The unexplored sexuality of young persons with learning disability in Malta. British Journal of Learning Disabilities, 47(3), 156-164. https://doi.org/10.1111/bld.12266
Bahner, J., Gäddman Johansson, R. y Svanelöv, E. (2024). Who counts as a sexual subject? The impact of ableist rhetoric for people with intellectual disability in Sweden. Sexuality Research and Social Policy, 21(1), 161-176. https://doi.org/10.1007/s13178-023-00873-5
Beltran-Arreche, M., Fullana, J. y Pallisera, M. (2023). Perspectives of women with intellectual disabilities regarding affective sexual relationships: A systematic literature review. Sexuality Research and Social Policy, 1-16. https://doi.org/10.1007/s13178-023-00911-2
Bernert, D. J. (2011). Sexuality and disability in the lives of women with intellectual disabilities. Sexuality and Disability, 29(2), 129-141. https://doi.org/10.1007/s11195-010-9190-4
Bigby, C., Frawley, P. y Ramcharan, P. (2014). Conceptualizing inclusive research with people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 27(1), 3-12. https://doi.org/10.1111/jar.12083
Björnsdóttir, K., Stefánsdóttir, Á. y Stefánsdóttir, G. V. (2017). People with intellectual disabilities negotiate autonomy, gender and sexuality. Sexuality and Disability, 35(3), 295-311. https://doi.org/10.1007/S11195-017-9492-X
Braun, V. y Clarke, V. (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328-352. https://doi.org/10.1080/14780887.2020.1769238
Brown, M. y Mccann, E. (2018). Sexuality issues and the voices of adults with intellectual disabilities: A systematic review of the literature. Research in Developmental Disabilities, 74, 124-138. https://doi.org/10.1016/j.ridd.2018.01.009
Burns, J. y Davies, D. (2011). Same-sex relationships and women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 24(4), 351-360. https://doi.org/10.1111/j.1468-3148.2010.00609.x
Diaz-Garolera, G., Fullana, J., Pallisera, M., Puyalto, C. y Rey, A. (2022). ¿Aprender, compartir, contribuir? Perspectivas de personas con discapacidad intelectual sobre su participación en investigaciones. Revista Internacional de Educación para la Justicia Social, 11(1), 175-195. https://doi.org/10.15366/riejs2022.11.1.010
English, B., Tickle, A., y Das Nair, R. (2017). Views and experiences of people with intellectual disabilities regarding intimate relationships: A qualitative metasynthesis. Sexuality and Disability, 36(2), 149-173. https://doi.org/10.1007/s11195-017-9502-z
Fitzgerald, C. y Withers, P. (2013). ‘I don’t know what a proper woman means’: What women with intellectual disabilities think about sex, sexuality and themselves. British Journal of Learning Disabilities, 41(1), 5-12. https://doi.org/10.1111/j.1468-3156.2011.00715.x
Frawley, P. y O’shea, A. (2019). ‘Nothing about us without us’: sex education by and for people with intellectual disability in Australia. Sex Education. https://doi.org/10.1080/14681811.2019.1668759
Frohmader, C. (2014). ‘Gender Blind, Gender Neutral’: The effectiveness of the National Disability Strategy in improving the lives of women and girls with disabilities. Women With Disabilities Australia (WWDA). www.wwda.org.au
García Iriarte, E., O’brien, P. y Chadwick, D. (2014). Involving people with intellectual disabilities within research teams: Lessons learned from an Irish experience. Journal of Policy and Practice in Intellectual Disabilities, 11(2), 149-157. https://doi.org/10.1111/jppi.12081
Gil-Llario, M. D., Díaz-Rodríguez, I., Morell-Mengual, V., Gil-Juliá, B. y Ballester-Arnal, R. (2022). Sexual health in Spanish people with intellectual disability: The impact of the Lockdown due to COVID-19. Sexuality Research and Social Policy, 19(3), 1217-1227. https://doi.org/10.1007/s13178-021-00621-7
Gil-Llario, M. D., Morell-Mengual, V., Ballester-Arnal, R. y Díaz-Rodríguez, I. (2017). The experience of sexuality in adults with intellectual disability. Journal of Intellectual Disability Research, 62(1), 72-80. https://doi.org/10.1111/jir.12455
Ignagni, E., Fudge Schormans, A., Liddiard, K. y Runswick-Cole, K. (2016). ‘Some people are not allowed to love’: Intimate citizenship in the lives of people labelled with intellectual disabilities. Disability and Society, 31(1), 131-135. https://doi.org/10.1080/09687599.2015.1136148
Ionescu, C. E., Rusu, A. S. y Costea-Bărluțiu, C. (2019). Attitudes of Special Education teachers towards sexual education of students with intellectual disabilities: Effects of religiosity and professional experiences. Educatia, 21(17), 101-111. https://doi.org/10.24193/ED21.2019.17.10
Jaramillo Ruiz, F. (2017). The Committee on the Rights of Persons with Disabilities and its take on sexuality. Reproductive Health Matters, 25(50), 92-103. https://doi.org/10.1080/09688080.2017.1332449
Johnson, K., Minogue, G. y Hopkins, R. (2014). Inclusive research: Making a difference to policy and legislation. Journal of Applied research in Intellectual Disabilities, 27(1), 76-84. https://doi.org/10.1111/jar.12085
Kiefer, R. A. (2008). An integrative review of the concept of well-being. Holistic Nursing Practice, 22(5), 244-252. https://doi.org/10.1097/01.HNP.0000334915.16186.b2
Krueger, R. A. y Casey, M. A. (2009). Focus groups. A practical guide for applied research. Sage Publications.
Mattila, J., Määttä, K. y Uusiautti, S. (2017). ‘Everyone needs love’–an interview study about perceptions of love in people with intellectual disability (ID). International Journal of Adolescence and Youth, 22(3), 296-307. https://doi.org/10.1080/02673843.2016.1167749
O’shea, A. y Frawley, P. (2020). Gender, sexuality and relationships for young Australian women with intellectual disability. Disability and Society, 35(4), 654-675. https://doi.org/10.1080/09687599.2019.1647148
Peta, C., Mckenzie, J., Kathard, H. y Africa, A. (2017). We are not asexual beings: Disabled women in Zimbabwe talk about their active sexuality. Sexuality Research and Social Policy, 14(4), 410-424. https://doi.org/10.1007/s13178-016-0266-5
Puyaltó, C., Beltran, M., Coll, T., Diaz-Garolera, G., Figueras, M., Fullana, J., González, C., Pallisera, M., Pujolar, J. y Rey, A. (2022). Relationships of people with intellectual disabilities in times of pandemic: An inclusive study. Social Sciences, 11(5), 198. https://doi.org/10.3390/socsci11050198
Retznik, L., Wienholz, S., Höltermann, A., Conrad, I. y Riedel-Heller, S. G. (2021). “It tingled as if we had gone through an anthill”. Young people with intellectual disability and their experiences with relationship, sexuality and contraception. Sexuality and Disability, 39(2), 421-438. https://doi.org/10.1007/s11195-020-09670-z
Rey, A., Fullana, J. y Pallisera, M. (2024). Personal support networks of young people with and without intellectual disability. A comparative study. Journal of Applied Research in Intellectual Disabilities, 37(2), e13192. https://doi.org/10.1111/jar.13192
Rojas Pernia, S., Lázaro Visa, S. y Salmón, I. H. (2015). Necesidades afectivo-sexuales en personas con discapacidad intelectual. Claves para construir propuestas formativas desde la experiencia subjetiva. Revista Española de Discapacidad, 3(2).
Rushbrooke, E., Murray, C. y Townsend, S. (2014). The experiences of intimate relationships by people with intellectual disabilities: A qualitative study. Journal of Applied Research in Intellectual Disabilities, 27(6), 531-541. https://doi.org/10.1111/jar.12091
Scott, M., Foley, K. R., Bourke, J., Leonard, H. y Girdler, S. (2014). “I have a good life”: The meaning of well-being from the perspective of young adults with Down syndrome. Disability and Rehabilitation, 36(15), 1290-1298. https://doi.org/10.3109/09638288.2013.854843
Siebelink, E. M., De Jong, M. D. T., Taal, E. y Roelvink, L. (2006). Sexuality and people with intellectual disabilities: Assessment of knowledge, attitudes, experiences, and needs. Mental Retardation, 44(4), 283-294. https://doi.org/https://doi.org/10.1352/0047-6765(2006)44[283:SAPWID]2.0.CO;2
Starke, M., Rosqvist, H. B. y Kuosmanen, J. (2016). Eternal children? Professionals’ constructions of women with an intellectual disability who are victims of sexual crime. Sexuality and Disability, 34(3), 315-328. https://doi.org/10.1007/s11195-016-9441-0
Stoffelen, J. M. T., Schaafsma, D., Kok, G. y Curfs, L. M. G. (2018). Women who love: An explorative study on experiences of lesbian and bisexual women with a mild intellectual disability in the Netherlands. Sexualitiy and Disability, 36(3), 249-264. https://doi.org/10.1007/s11195-018-9519-y
Stoffelen, J. M. T., Schaafsma, D., Kok, G. y Curfs, L. M. G. (2019). Views on sex using the nominal group technique to explore sexuality and physical intimacy in individuals with intellectual disabilities. Sexuality and Disability, 37(2), 227-244. https://doi.org/10.1007/s11195-018-9550-z
Svae, G. B., Blixt, L. y Søndenaa, E. (2022). Personal and sexual boundaries: The experiences of people with intellectual disabilities. BMC Public Health, 22(1), 1-10. https://doi.org/10.1186/S12889-022-14181-X/FIGURES/1
United Nations. (2006). Convention on the Rights of Persons with Disabilities. Convention on the Rights of Persons with Disabilities, 20881(September), 1-31.
United Nations. (2020). The global goals for a sustainable development. Global Goals. https://www.globalgoals.org/
Verdugo, M. Á., Navas, P., Gómez, L. E. y Schalock, R. L. (2012). The concept of quality of life and its role in enhancing human rights in the field of intellectual disability. Journal of Intellectual Disability Research, 56, 1036-1045. https://doi.org/10.1111/j.1365-2788.2012.01585.x
Walmsley, J. y Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and future. Jessica Kingsley Publishers.
Walmsley, J., Strnadová, I. y Johnson, K. (2018). The added value of inclusive research. Journal of Applied Research in Intellectual Disabilities, 31(5), 751-759. https://doi.org/10.1111/jar.12431
World Health Organization. (2017). Sexual health and its linkages to reproductive health: An operational approach. https://apps.who.int/iris/bitstream/handle/10665/258738/9789241512886-eng.pdf;jsessionid=60304749135CD9D0D713D3A5FC1AA1BC?sequence=1
Azzopardi Lane, C. L., Cambridge, P. y Murphy, G. (2019). Muted voices: The unexplored sexuality of young persons with learning disability in Malta. British Journal of Learning Disabilities, 47(3), 156-164. https://doi.org/10.1111/bld.12266
Bahner, J., Gäddman Johansson, R. y Svanelöv, E. (2024). Who counts as a sexual subject? The impact of ableist rhetoric for people with intellectual disability in Sweden. Sexuality Research and Social Policy, 21(1), 161-176. https://doi.org/10.1007/s13178-023-00873-5
Beltran-Arreche, M., Fullana, J. y Pallisera, M. (2023). Perspectives of women with intellectual disabilities regarding affective sexual relationships: A systematic literature review. Sexuality Research and Social Policy, 1-16. https://doi.org/10.1007/s13178-023-00911-2
Bernert, D. J. (2011). Sexuality and disability in the lives of women with intellectual disabilities. Sexuality and Disability, 29(2), 129-141. https://doi.org/10.1007/s11195-010-9190-4
Bigby, C., Frawley, P. y Ramcharan, P. (2014). Conceptualizing inclusive research with people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 27(1), 3-12. https://doi.org/10.1111/jar.12083
Björnsdóttir, K., Stefánsdóttir, Á. y Stefánsdóttir, G. V. (2017). People with intellectual disabilities negotiate autonomy, gender and sexuality. Sexuality and Disability, 35(3), 295-311. https://doi.org/10.1007/S11195-017-9492-X
Braun, V. y Clarke, V. (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328-352. https://doi.org/10.1080/14780887.2020.1769238
Brown, M. y Mccann, E. (2018). Sexuality issues and the voices of adults with intellectual disabilities: A systematic review of the literature. Research in Developmental Disabilities, 74, 124-138. https://doi.org/10.1016/j.ridd.2018.01.009
Burns, J. y Davies, D. (2011). Same-sex relationships and women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 24(4), 351-360. https://doi.org/10.1111/j.1468-3148.2010.00609.x
Diaz-Garolera, G., Fullana, J., Pallisera, M., Puyalto, C. y Rey, A. (2022). ¿Aprender, compartir, contribuir? Perspectivas de personas con discapacidad intelectual sobre su participación en investigaciones. Revista Internacional de Educación para la Justicia Social, 11(1), 175-195. https://doi.org/10.15366/riejs2022.11.1.010
English, B., Tickle, A., y Das Nair, R. (2017). Views and experiences of people with intellectual disabilities regarding intimate relationships: A qualitative metasynthesis. Sexuality and Disability, 36(2), 149-173. https://doi.org/10.1007/s11195-017-9502-z
Fitzgerald, C. y Withers, P. (2013). ‘I don’t know what a proper woman means’: What women with intellectual disabilities think about sex, sexuality and themselves. British Journal of Learning Disabilities, 41(1), 5-12. https://doi.org/10.1111/j.1468-3156.2011.00715.x
Frawley, P. y O’shea, A. (2019). ‘Nothing about us without us’: sex education by and for people with intellectual disability in Australia. Sex Education. https://doi.org/10.1080/14681811.2019.1668759
Frohmader, C. (2014). ‘Gender Blind, Gender Neutral’: The effectiveness of the National Disability Strategy in improving the lives of women and girls with disabilities. Women With Disabilities Australia (WWDA). www.wwda.org.au
García Iriarte, E., O’brien, P. y Chadwick, D. (2014). Involving people with intellectual disabilities within research teams: Lessons learned from an Irish experience. Journal of Policy and Practice in Intellectual Disabilities, 11(2), 149-157. https://doi.org/10.1111/jppi.12081
Gil-Llario, M. D., Díaz-Rodríguez, I., Morell-Mengual, V., Gil-Juliá, B. y Ballester-Arnal, R. (2022). Sexual health in Spanish people with intellectual disability: The impact of the Lockdown due to COVID-19. Sexuality Research and Social Policy, 19(3), 1217-1227. https://doi.org/10.1007/s13178-021-00621-7
Gil-Llario, M. D., Morell-Mengual, V., Ballester-Arnal, R. y Díaz-Rodríguez, I. (2017). The experience of sexuality in adults with intellectual disability. Journal of Intellectual Disability Research, 62(1), 72-80. https://doi.org/10.1111/jir.12455
Ignagni, E., Fudge Schormans, A., Liddiard, K. y Runswick-Cole, K. (2016). ‘Some people are not allowed to love’: Intimate citizenship in the lives of people labelled with intellectual disabilities. Disability and Society, 31(1), 131-135. https://doi.org/10.1080/09687599.2015.1136148
Ionescu, C. E., Rusu, A. S. y Costea-Bărluțiu, C. (2019). Attitudes of Special Education teachers towards sexual education of students with intellectual disabilities: Effects of religiosity and professional experiences. Educatia, 21(17), 101-111. https://doi.org/10.24193/ED21.2019.17.10
Jaramillo Ruiz, F. (2017). The Committee on the Rights of Persons with Disabilities and its take on sexuality. Reproductive Health Matters, 25(50), 92-103. https://doi.org/10.1080/09688080.2017.1332449
Johnson, K., Minogue, G. y Hopkins, R. (2014). Inclusive research: Making a difference to policy and legislation. Journal of Applied research in Intellectual Disabilities, 27(1), 76-84. https://doi.org/10.1111/jar.12085
Kiefer, R. A. (2008). An integrative review of the concept of well-being. Holistic Nursing Practice, 22(5), 244-252. https://doi.org/10.1097/01.HNP.0000334915.16186.b2
Krueger, R. A. y Casey, M. A. (2009). Focus groups. A practical guide for applied research. Sage Publications.
Mattila, J., Määttä, K. y Uusiautti, S. (2017). ‘Everyone needs love’–an interview study about perceptions of love in people with intellectual disability (ID). International Journal of Adolescence and Youth, 22(3), 296-307. https://doi.org/10.1080/02673843.2016.1167749
O’shea, A. y Frawley, P. (2020). Gender, sexuality and relationships for young Australian women with intellectual disability. Disability and Society, 35(4), 654-675. https://doi.org/10.1080/09687599.2019.1647148
Peta, C., Mckenzie, J., Kathard, H. y Africa, A. (2017). We are not asexual beings: Disabled women in Zimbabwe talk about their active sexuality. Sexuality Research and Social Policy, 14(4), 410-424. https://doi.org/10.1007/s13178-016-0266-5
Puyaltó, C., Beltran, M., Coll, T., Diaz-Garolera, G., Figueras, M., Fullana, J., González, C., Pallisera, M., Pujolar, J. y Rey, A. (2022). Relationships of people with intellectual disabilities in times of pandemic: An inclusive study. Social Sciences, 11(5), 198. https://doi.org/10.3390/socsci11050198
Retznik, L., Wienholz, S., Höltermann, A., Conrad, I. y Riedel-Heller, S. G. (2021). “It tingled as if we had gone through an anthill”. Young people with intellectual disability and their experiences with relationship, sexuality and contraception. Sexuality and Disability, 39(2), 421-438. https://doi.org/10.1007/s11195-020-09670-z
Rey, A., Fullana, J. y Pallisera, M. (2024). Personal support networks of young people with and without intellectual disability. A comparative study. Journal of Applied Research in Intellectual Disabilities, 37(2), e13192. https://doi.org/10.1111/jar.13192
Rojas Pernia, S., Lázaro Visa, S. y Salmón, I. H. (2015). Necesidades afectivo-sexuales en personas con discapacidad intelectual. Claves para construir propuestas formativas desde la experiencia subjetiva. Revista Española de Discapacidad, 3(2).
Rushbrooke, E., Murray, C. y Townsend, S. (2014). The experiences of intimate relationships by people with intellectual disabilities: A qualitative study. Journal of Applied Research in Intellectual Disabilities, 27(6), 531-541. https://doi.org/10.1111/jar.12091
Scott, M., Foley, K. R., Bourke, J., Leonard, H. y Girdler, S. (2014). “I have a good life”: The meaning of well-being from the perspective of young adults with Down syndrome. Disability and Rehabilitation, 36(15), 1290-1298. https://doi.org/10.3109/09638288.2013.854843
Siebelink, E. M., De Jong, M. D. T., Taal, E. y Roelvink, L. (2006). Sexuality and people with intellectual disabilities: Assessment of knowledge, attitudes, experiences, and needs. Mental Retardation, 44(4), 283-294. https://doi.org/https://doi.org/10.1352/0047-6765(2006)44[283:SAPWID]2.0.CO;2
Starke, M., Rosqvist, H. B. y Kuosmanen, J. (2016). Eternal children? Professionals’ constructions of women with an intellectual disability who are victims of sexual crime. Sexuality and Disability, 34(3), 315-328. https://doi.org/10.1007/s11195-016-9441-0
Stoffelen, J. M. T., Schaafsma, D., Kok, G. y Curfs, L. M. G. (2018). Women who love: An explorative study on experiences of lesbian and bisexual women with a mild intellectual disability in the Netherlands. Sexualitiy and Disability, 36(3), 249-264. https://doi.org/10.1007/s11195-018-9519-y
Stoffelen, J. M. T., Schaafsma, D., Kok, G. y Curfs, L. M. G. (2019). Views on sex using the nominal group technique to explore sexuality and physical intimacy in individuals with intellectual disabilities. Sexuality and Disability, 37(2), 227-244. https://doi.org/10.1007/s11195-018-9550-z
Svae, G. B., Blixt, L. y Søndenaa, E. (2022). Personal and sexual boundaries: The experiences of people with intellectual disabilities. BMC Public Health, 22(1), 1-10. https://doi.org/10.1186/S12889-022-14181-X/FIGURES/1
United Nations. (2006). Convention on the Rights of Persons with Disabilities. Convention on the Rights of Persons with Disabilities, 20881(September), 1-31.
United Nations. (2020). The global goals for a sustainable development. Global Goals. https://www.globalgoals.org/
Verdugo, M. Á., Navas, P., Gómez, L. E. y Schalock, R. L. (2012). The concept of quality of life and its role in enhancing human rights in the field of intellectual disability. Journal of Intellectual Disability Research, 56, 1036-1045. https://doi.org/10.1111/j.1365-2788.2012.01585.x
Walmsley, J. y Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and future. Jessica Kingsley Publishers.
Walmsley, J., Strnadová, I. y Johnson, K. (2018). The added value of inclusive research. Journal of Applied Research in Intellectual Disabilities, 31(5), 751-759. https://doi.org/10.1111/jar.12431
World Health Organization. (2017). Sexual health and its linkages to reproductive health: An operational approach. https://apps.who.int/iris/bitstream/handle/10665/258738/9789241512886-eng.pdf;jsessionid=60304749135CD9D0D713D3A5FC1AA1BC?sequence=1
Beltrán Arreche, M., Fullana Noell, J., Pallisera Díaz, M., Rey Freire, A., Blay Bisbal, C., & Vinatea Elorrieta, A. (2024). Las relaciones afectivo-sexuales de las personas con discapacidad intelectual: apoyos y barreras desde la perspectiva de personas con discapacidad intelectual. Siglo Cero, 55(3), 29–48. https://doi.org/10.14201/scero.31860
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