Let’s talk about sex: How people with intellectual disability in Australia engage with online social media and intimate relationships
Special issue: Internet use and disability
People with intellectual disability often experience repression and control of their sexuality as they have historically been perceived as being childlike and asexual by members of society. Such acts can be seen to contravene their Human Rights under The Convention on the Rights of Person with Disabilities (CRPD), which endorses the rights of people with intellectual disability to fully express their sexuality.
The purpose of this study was to explore if people with intellectual disability access internet based social media, and if so, if they use it to form relationships that express their sexuality.
Using an interpretative phenomenological approach, semi-structured interviews were conducted with 30 adults with an intellectual disability (22 males, 8 females), aged between 20 to 66 years. Participants were purposely sampled though disability #organisations.
Three themes emerged from the data: creating new friendships, maintaining existing friendships, exploring and expressing sexuality. People with intellectual disability used a variety of personal electronic devices to access internet based social media to be socially and sexually active. Facebook was accessed to make contact with existing platonic friends, peers and interest groups to meet socially. Sexually explicit material was viewed using the internet, either as an individual activity or by couples in monogamous relationships.
This study adds to the paucity of research examining the use of internet based social media by people with intellectual disability for sexual expression. This research revealed the people with intellectual disability exercised cyber safe practices without any explicit formal education and conducted themselves in a respectful manner. Few participants acted in a manner that appeared to put them at risk of exploitation.
intellectual disability; internet based social media; relationships; sexuality; Gatekeeper
Judith Darragh is a PhD Candidate with degrees in Behavioural Science (Psych), Disability Studies Honours (First Class) and Master of Social work, all from Flinders University, Adelaide. Judith is undertaking this study around sexual expression and social media access for people living with intellectual disability. Judith works as a tutor in the Bachelor of Disability and Development Education.
Dr Louise Reynolds is an independent researcher whose publications, teaching and professional involvement involve interests in disability, Australian Health Care System, pre-hospital care and qualitative methodologies.
Assoc. Prof Caroline Ellison is an Associate Professor in Disability and Community Inclusion, School of Health Sciences, Flinders University and the Assistant Dean of International for the School of Health Science. Her research, publications, teaching and professional involvement are in areas such as sexuality and Disability, Community Inclusion, Person Centred Active Support, and Leisure, Arts and Sport.
Dr Michelle Bellon is a Senior Lecturer in Disability and Community Inclusion, School of Health Sciences, Flinders University. Her research, publications, teaching and professional involvement combine interests in epilepsy, acquired brain injury, community integration and family/care-giver supports.
Amado, A. N., Stancliffe, R. J., McCarron, M., & McCallion, P. (2013). Social inclusion and community participation of individuals with intellectual/ development disabilities. Intellectual and Developmental Disabilities, 51, 360-375. https://doi.org/10.1352/1934-9556-51.5.360
Batey, G., & Waine, H. (2015). Safe internet access for service users. Art & Science, 18(3), 16-20.
Bazzo, G., Nota, L., Soresi, S., Ferrari, L., & Minnes, P. (2007). Attitudes of social service providers towards the sexuality of individuals with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 20, 110-115. https://doi.org/10.1111/j.1468-3148.2006.00308.x
Brown, H. (1994). 'An ordinary sexual life?’ A review of the normalisation principle as it applies to the sexual options of people with learning disabilities. Disability & Society, 9, 123-144. https://doi.org/10.1080/09687599466780181
Bruder, C., & Kroese, B. (2005). The efficacy of interventions designed to prevent and protect people with intellectual disabilities from sexual abuse: A review of the literature. The Journal of Adult Protection, 7(2), 13-27. https://doi.org/10.1108/14668203200500009
Chadwick, D., Wesson, C., & Fullwood, C. (2013). Internet access by people with intellectual disabilities: Inequalities and opportunities. Future Internet, 5, 376-397. https://doi.org/10.3390/fi5030376
Cohen, N. Z., & Omery, A. (1994). Schools of phenomenology: Implications for research. In J. M. Morse (Ed.), Critical issues in qualitative research methods (pp. 136-156). Thousand Oaks CA: Sage Publications.
Collingridge, D, & Gantt, E. (2008).The quality of qualitative research. American Journal of Medical Quality, 23, 389- 395. https://doi.org/10.1177/1062860608320646
Correa, T., Hinsley, A., & de Zúñiga, H. (2010). Who interacts on the Web?: The intersection of users’ personality and social media use. Computers in Human Behavior, 26, 247-253. https://doi.org/10.1016/j.chb.2009.09.003
Craft, A. (1987). Mental handicap and sexuality: Issues and perspectives. Turnbridge Wells: Costello.
Creswell, J.W. (2014). Research design: Qualitative, quantitative, and mixed methods approaches (4th ed.). Thousand Oaks, CA: Sage Publications.
Creswell, J., Hanson, W., Clark, P., & Morales, A. (2007). Qualitative research designs: Selection and implementation. Counselling Psychologist, 35, 236-264. https://doi.org/10.1177/0011000006287390
D’Aubin, A. (2007). Working for barrier removal in the ICT area: Creating a more accessible and inclusive Canada. The Information Society: An International Journal, 23, 193–201. https://doi.org/10.1080/01972240701323622
Delaney, C. (2003). Walking a fine line: Graduate nurses’ transition experiences during orientation. Journal of Nursing Education, 42, 437-443.
DiCicco-Bloom, B., & Crabtree, B. F. (2006). Making sense of qualitative research: The qualitative interview. Medical Education, 40, 314-321. https://doi.org/10.1111/j.1365-2929.2006.02418.x
Di Giulio, G. (2003). Sexuality and people living with physical or developmental disabilities: A review of key issues. The Canadian Journal of Human Sexuality, 12, 53-68.
Dobransky, K., & Hargittai, E. (2006). The disability divide in internet access and use. Information, Communication & Society, 9, 313-334. https://doi.org/10.1080/13691180600751298
Dowling, M., & Cooney, A. (2012). Research approaches related to phenomenology: Negotiating a complex landscape. Nurse Researcher, 20, 21-27. https://doi.org/10.7748/nr2012.11.20.2.21.c9440
Flood, A. (2010). Understanding phenomenology. Phenomenology, 17(2), 7-15.
Fossey, E., Harvey, C., McDermott, F., & Davidson, L. (2002). Understanding and evaluating qualitative research. Australian and New Zealand Journal of Psychiatry, 36, 717-732. https://doi.org/10.1046/j.1440-1614.2002.01100.x
Franco, D. G., Cardoso, J., & Neto, I. (2012). Attitudes towards affectivity and sexuality of people with intellectual disability. Sexuality and Disability, 30, 261-287. https://doi.org/10.1007/s11195-012-9260-x
Gagnon, J. H., & Simon, W. (2005). Sexual Conduct. The Social Sources of Human Sexuality (2nd ed.). New Brunswick, London: Aldine Transaction.
Goggin, G. (2009). Disability, media, and the politics of vulnerability. Research Online, 1(19), 1-13.
Gutiérrez, P., & Martorell, A. (2011). People with intellectual disability and ICTs/Las personas con discapacidad intelectual ante las TIC. Comunicar, 18(36), 173-180. https://doi.org/10.3916/C36-2011-03-09
Hollomotz, A. (2011). Learning difficulties and sexual vulnerability: A social approach. London: Jessica Kingsley Publishers.
Jaeger, P. T. (2012). Disability and the Internet: Confronting a digital divide. Disability and the Internet. Lynne Rienner Publishers.
Kulick, D., & Rydström, J. (2015). Loneliness and its opposite: Sex, disability, and the ethics of engagement. Duke University Press.
Lazar, J., & Jaeger, P. (2011). Reducing Barriers to online access for people with disabilities. Issues in Science and Technology, 27(2), 69-82.
Lester, S. (1999). An introduction to phenomenological research. Taunton UK: Stan Lester Developments. Retrieved from https://www.rgs.org/NR/rdonlyres/F50603E0-41AF-4B15-9C84-BA7E4DE8CB4F/0/Seaweedphenomenologyresearch.pdf
Liamputtong, P. (2009). Qualitative data analysis: Conceptual and practical considerations. Health Promotion Journal of Australia, 20, 133-139. https://doi.org/10.1071/HE09133
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.
Löfgren-Mårtenson, L. (2004). "May I?" About sexuality and love in the new generation with intellectual disabilities. Sexuality and Disability, 22, 197-207. https://doi.org/10.1023/B:SEDI.0000039062.73691.cb
Löfgren-Mårtenson, L. (2008). Love in cyberspace: Swedish young people with intellectual disabilities and the Internet. Scandinavian Journal of Disability, 10, 125-138. https://doi.org/10.1080/15017410701758005
Lowes, L., & Prowse, M. A. (2001). Standing outside the interview process? The illusion of objectivity in phenomenological data generation. International Journal of Nursing Studies, 38, 471-480. https://doi.org/10.1016/S0020-7489(00)00080-8
MacDougall, C., & Fudge, E. (2001). Planning and recruiting the sample for focus groups and in-depth interviews. Qualitative Health Research, 11, 117-126. https://doi.org/10.1177/104973201129118975
Mackey, S. (2005). Phenomenological nursing research: Methodological insights derived from Heidegger's interpretive phenomenology. International Journal of Nursing Studies, 42, 179-186. https://doi.org/10.1016/j.ijnurstu.2004.06.011
McCarthy, M. (2014). Women with intellectual disability: Their sexual lives in the 21st century, Journal of Intellectual and Developmental Disability, 39, 24-131. https://doi.org/10.3109/13668250.2014.894963
McDonagh, R., (2007). Too sexed-up! The Journal of Adult Protection, 9(4), 27-33. https://doi.org/10.1108/14668203200700025
McRuer, R., & Mollow, A. (2012). Sex and disability. Duke University Press.
Murphy, G. H. (2003). Capacity to consent to sexual relationships in adults with learning disabilities. Journal of Family Planning and Reproductive Health, 29, 148-149. https://doi.org/10.1783/147118903101197520
Parchomiuk, M. (2012). Model of intellectual disability and the relationship of attitudes towards the sexuality of persons with an intellectual disability. Sexuality and Disability, 31, 125-139. https://doi.org/10.1007/s11195-012-9285-1
Parley, F. (2010). What does vulnerability mean? British Journal of Learning Disabilities, 39, 266-276. https://doi.org/10.1111/j.1468-3156.2010.00663.x
Pietkiewicz, I., & Smith, J. A. (2014). A practical guide to using Interpretative Phenomenological Analysis in qualitative research psychology. Psychological Journal, 20(1), 7-14.
Priest, H. (2002). An approach to the phenomenological analysis of data. (Issues in research). Nurse Researcher, 10(2), 50-63. https://doi.org/10.7748/nr2003.01.10.2.50.c5888
Raacke, J., & Bonds-Raacke, J. (2008). MySpace and Facebook: Applying the uses and gratifications theory to exploring friend-networking sites. CyberPsychology & Behavior, 11, 169-174. https://doi.org/10.1089/cpb.2007.0056
Reid, G. G., & Boyer, W. (2013). Social network sites and young adolescent identity development. Childhood Education, 89, 243-253. https://doi.org/10.1080/00094056.2013.815554
Rogers, C. (2009). (S)excerpts from a life told: Sex, gender and learning disability. Sexualities, 12, 270-288. https://doi.org/10.1177/1363460709103891
Seymour, D., & Lupton, W. (2000). Technology, selfhood and physical disability. Social Science & Medicine, 50, 1851-1862. https://doi.org/10.1016/S0277-9536(99)00422-0
Shakespeare, T. (2008). Debating disability. Journal of Medical Ethics, 34, 11-14. https://doi.org/10.1136/jme.2006.019992
Shakespeare, T., Gillespie-Sells, K., & Davies, D. (1996). The sexual politics of disability: Untold desires. Burns & Oates.
Smith, J A. (1996). Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology. Psychology and Health, 11, 261-271. https://doi.org/10.1080/08870449608400256
Smith, J., & Osborne, M. (2003). Interpretative phenomenological analysis. In J. A. Smith (Ed.), Qualitative psychology. A practical guide to research methods (pp. 51-80). London: Sage Publications.
Smith, J., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. London: Sage Publications.
Stendal. K. (2012). How do people with disability use and experience virtual worlds and ICT: A literature review. Virtual Worlds Research, 5(1), 1–17.
Swango-Wilson, A. (2010). Systems theory and the development of sexual identity for individuals with intellectual/developmental disability. Sexuality and Disability, 28, 157-164. https://doi.org/10.1007/s11195-010-9167-3
Sweeney, L. (2007). The importance of human sexuality education for students with disability. The Exceptional Parent, 37(9), 36-39.
Todres, L., & Wheeler, S. (2001). The complementarity of phenomenology, hermeneutics and existentialism as a philosophical perspective for nursing research. International Journal of Nursing Studies, 38(1), 1-8. https://doi.org/10.1016/S0020-7489(00)00047-X
United Nations (2006). The United Nations Convention on the Rights of Persons with Disabilities. USA: Author.
Van der Zalm, J., & Bergum, V. (2000). Hermeneutic-phenomenology: Providing living knowledge for nursing practice Journal of Advanced Nursing, 31, 211-218. https://doi.org/10.1046/j.1365-2648.2000.01244.x
1. The Right to Sexuality, Reproductive Health, and Found a Family for People with Intellectual Disability: A Systematic Review
Patricia Pérez-Curiel, Eva Vicente, M. Lucía Morán, Laura E. Gómez
International Journal of Environmental Research and Public Health vol: 20, issue: 2, first page: 1587, year: 2023
2. CVT Connect: Creating safe and accessible social media for people with learning disabilities
Peter Williams, Philip Gibson
Technology and Disability vol: 32, issue: 2, first page: 81, year: 2020
3. Securing sexual justice for people with intellectual disability: A systematic review and critical appraisal of research recommendations
Hannah G. Ginn
Journal of Applied Research in Intellectual Disabilities vol: 35, issue: 4, first page: 921, year: 2022
4. Adults with intellectual disabilities as users of social media: A scoping review
Sian Anderson, Tal Araten‐Bergman, Gillian Steel
British Journal of Learning Disabilities vol: 51, issue: 4, first page: 544, year: 2023
5. Exploring how support workers understand their role in supporting adults with intellectual disabilities to access the Internet for intimate relationships
Jason Lines, Helen Combes, Ruth Richards
Journal of Applied Research in Intellectual Disabilities vol: 34, issue: 2, first page: 556, year: 2021
6. Sexual health concerns in women with intellectual disabilities: a systematic review in qualitative studies
Behzad Karami Matin, Michelle Ballan, Fatemeh Darabi, Ali Kazemi Karyani, Moslem Soofi, Shahin Soltani
BMC Public Health vol: 21, issue: 1, year: 2021
7. “Man wird bei diesem Thema gerne mal übersehen“ – eine Exploration sexueller Themen in Weblogs von Menschen mit Körperbehinderungen
Barbara Ortland, Ann-Kathrin Scholten
Zeitschrift für Sexualforschung vol: 34, issue: 03, first page: 153, year: 2021
8. Disability and Sexuality: Toward a Focus on Sexuality Education in Ghana
Osman Wumpini Shamrock, Hannah G. Ginn
Sexuality and Disability vol: 39, issue: 4, first page: 629, year: 2021
9. Opportunities and Hazards of the Internet for Students with Intellectual Disabilities: The Views of Pre-Service and In-Service Teachers
Esther Chiner, Marcos Gómez-Puerta, Santiago Mengual-Andrés
International Journal of Disability, Development and Education vol: 68, issue: 4, first page: 538, year: 2021
10. The ‘Collaborative Personal Statement’: a more inclusive method of data-gathering than audio recording interviews with vulnerable people
European Journal of Special Needs Education vol: 35, issue: 4, first page: 466, year: 2020
11. The Design, Content and Delivery of Relationship and Sexuality Education Programmes for People with Intellectual Disabilities: A Systematic Review of the International Evidence
Michael Brown, Edward McCann, Maria Truesdale, Mark Linden, Lynne Marsh
International Journal of Environmental Research and Public Health vol: 17, issue: 20, first page: 7568, year: 2020
12. Education and social work students’ perceptions of Internet use by people with and without intellectual disability
Esther Chiner, Marcos Gómez-Puerta, Esther Villegas
International Journal of Developmental Disabilities vol: 68, issue: 3, first page: 365, year: 2022
13. Attitudes towards sexuality and related caregiver support of people with intellectual disabilities: A systematic review on the perspectives of people with intellectual disabilities
Wouter de Wit, Wietske M. W. J. van Oorsouw, Petri J. C. M. Embregts
Journal of Applied Research in Intellectual Disabilities vol: 35, issue: 1, first page: 75, year: 2022
14. More Inclusion Through Participation?
Karina Nikolova, Daniela Stelzmann
Conjunctions vol: 8, issue: 1, first page: 1, year: 2021
15. H@ssles and Hopes on the Internet: What Professionals Have Encountered in Dealing with Internet Use and Sexuality among Youths with Intellectual Disabilities
Lotta Löfgren-Mårtenson, Martin Molin, Emma Sorbring
Papers of Social Pedagogy vol: 8, issue: 1, first page: 66, year: 2018
16. Sexual Health in Spanish People with Intellectual Disability: the Impact of the Lockdown due to COVID-19
M. Dolores Gil-Llario, Irene Díaz-Rodríguez, Vicente Morell-Mengual, Beatriz Gil-Juliá, Rafael Ballester-Arnal
Sexuality Research and Social Policy vol: 19, issue: 3, first page: 1217, year: 2022
17. “It's just more complicated!”: Experiences of adults with intellectual disabilities when navigating digital sexual fields
Alan Santinele Martino, David Kinitz
Cyberpsychology: Journal of Psychosocial Research on Cyberspace vol: 16, issue: 2, year: 2022
18. In search of solutions regarding the sex education of people with intellectual disabilities in Poland - participatory action research
Klaudia Wos, Celina Kamecka-Antczak, Mateusz Szafrański
European Journal of Special Needs Education vol: 36, issue: 4, first page: 517, year: 2021
19. Internet Use by People with Intellectual Disability: Exploring Digital Inequality—A Systematic Review
Sarah Glencross, Jonathan Mason, Mary Katsikitis, Kenneth Mark Greenwood
Cyberpsychology, Behavior, and Social Networking vol: 24, issue: 8, first page: 503, year: 2021
20. Social and Communicative Functioning in Populations with Intellectual Disability: Rethinking Measurement
Roger J. Stancliffe, Sarah A. Hall
ISBN 9780443132759 first page: 253, year: 2023
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Copyright © 2017 Cyberpsychology: Journal of Psychosocial Research on Cyberspace