Young People with Intellectual Disability Talking About Sexuality Education and Information

Abstract

When young people with intellectual disability (ID) begin to explore their sexuality they face a number of challenges accessing information and support. Unlike most of their non-disabled peers, young people with ID face the challenge of developing their sexuality and relationships within a narrow and regulated social and private life. For young men with ID their sexuality is often pathologised and for young women there is a focus on hygiene, self-protection, and pregnancy. For both young men and young women, their education is dominated by a biological focus and taught as ‘rules’. Mainstream sexuality education curriculum has progressed to a more holistic approach. This holistic approach is missing from programs experienced by young people with ID. In this study we spoke to young people with ID about their experiences and opinions of the effectiveness of sexuality education. Gender-specific focus groups were conducted with 14 young men and 11 young women with ID attending transition programs in Australia. Qualitative data were analysed using a constant comparative method informed by Grounded Theory and highlighted three issues: (1) the young people knew facts and rules but not the ‘how to’ of relationships and sex (2) access to information was limited and mediated by risk averse informants (3) the young people were full of unanswered questions - they wanted to know more and do more.

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References

  1. 1.

    Ward, L., et al.: Transition planning: how well does it work for young people with learning disabilities and their families? Br. J. Spec Educ. 30(3), 132–137 (2003)

    Article  Google Scholar 

  2. 2.

    Disabiliy Rights Commission and MORI.: Survey of Young Disabled People Aged 16–24. Disability Rights Commission (2002)

  3. 3.

    Young, R., Gore, N., McCarthy, M.: Staff attitudes towards sexuality in relation to gender of people with intellectual disability: a qualitative study. J. Intellect. Dev. Disabil. 37(4), 343–347 (2012)

    Article  PubMed  Google Scholar 

  4. 4.

    Meaney-Tavares, R., Gavidia-Payne, S.: Staff characteristics and attitudes towards the sexuality of people with an intellectual disability. J. Intellect. Dev. Disabil. 37(3), 269–273 (2012)

    Article  PubMed  Google Scholar 

  5. 5.

    Grieve, A., et al.: Staff attitudes towards the sexuality of people with learning disabilites: a comparison of different professional groups and residential facilities. Br. J. Learn. Disabil. 37, 76–84 (2008)

    Article  Google Scholar 

  6. 6.

    UNESCO: International Guidelines on Sexuality Education. UNESCO, Paris (2009)

    Google Scholar 

  7. 7.

    CRPD. Convention on the rights of persons with disabilities. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html (2006). Accessed 26 May 2016

  8. 8.

    Centre for Disability Research.: Report of Audit of Disability Research in Australia. Centre for Disability Research and Policy (2014)

  9. 9.

    Barrett, K.A., et al.: Intimate partner violence, health status, and health care access among women with disabilities. Women’s Health Issues 19(2), 94–100 (2009)

    Article  PubMed  Google Scholar 

  10. 10.

    Casteel, L., et al.: National study of physical and sexual assault among women with disabilities. Injury Prev. 14, 87–90 (2008)

    Article  Google Scholar 

  11. 11.

    Heenan, M., Murray, S.: Study of Reported Rapes in Victoria 2000–2003. Statewide Steering Committee to reduce sexual violence, Melbourne (2006)

    Google Scholar 

  12. 12.

    McConnell, D., Llewellyn, G.: Stereotypes, parents with intellectual disability and child protection. J. Soc. Welf. Family Law 24(3), 297–317 (2002)

    Article  Google Scholar 

  13. 13.

    McCarthy, M.: Women with intellectual disability: their sexual lives in the 21st century. J. Intellect. Dev. Disabil. 39(2), 124–131 (2014)

    Article  Google Scholar 

  14. 14.

    Gilmore, L., Malcolm, L.: “Best for everyone concerned” or “Only as a last resort”? Views of Australian doctors about sterilisation of men and women with intellectual disability. J. Intellect. Dev. Disabil. 39(2), 177–187 (2014)

    Article  Google Scholar 

  15. 15.

    Stefánsdóttir, G.V.: Sterilisation and women with intellectual disability in Iceland. J. Intellect. Dev. Disabil. 39(2), 188–197 (2014)

    Article  Google Scholar 

  16. 16.

    McCarthy, M.: Contraception and women with intellectual disabilities. J. Appl. Res. Intellect. Disabil. 22, 363–369 (2009)

    Article  Google Scholar 

  17. 17.

    McCarthy, M.: ‘I have the jab so I can’t be blamed for getting pregnant’: contraception and women with learning disabilities. Women’s Stud. Int. Forum 32(3), 198–208 (2009)

    Article  Google Scholar 

  18. 18.

    Wilson, N.J., et al.: A masculine perspective of gendered topics in the research literature on males and females with intellectual disability. J. Intellect. Dev. Disabil. 35(1), 1–8 (2010)

    Article  PubMed  Google Scholar 

  19. 19.

    van Schrojenstein Lantman-De Valk, H.M., et al.: Health problems in people with intellectual disability in general practice: a comparative study. Family Pract. 17(5), 405–407 (2000)

    Article  Google Scholar 

  20. 20.

    Lambrick, F., Glaser, W.: Sex offenders with an intellectual disability. Sex. Abuse: J. Res. Treat. 16(4), 381–392 (2004)

    Google Scholar 

  21. 21.

    Craig, L.A., Hutchinson, R.B.: Sexual offenders with learning disabilities: risk, recidivism and treatment. J. Sex. Aggress. 11(3), 289–304 (2005)

    Article  Google Scholar 

  22. 22.

    Azzopardi-Lane, C., Callus, A.-M.: Constructing sexual identities: people with intellectual disability talking about sexuality. Br. J. Learn. Disabil. 43(1), 32–37 (2015)

    Google Scholar 

  23. 23.

    Slater, J.: Youth and Disability. A Challenge to Mr Reasonable. Ashgate, Farnham (2015)

    Google Scholar 

  24. 24.

    Povilaitienė, N., Radzevičienė, L.: Parents’ and teachers’ attitude to family planning of adolescents with mild intellectual disabilities in the context of conceptions of gender and sexuality. Soc. Welf. Interdiscip. Approach 3(2), 8–18 (2013)

    Google Scholar 

  25. 25.

    Cuskelly, M., Bryde, R.: Attitudes towards the sexuality of adults with an intellectual disability: parents, support staff, and a community sample. J. Intellect. Dev. Disabil. 29(3), 255–264 (2004)

    Article  Google Scholar 

  26. 26.

    Pownall, J.D., Jahoda, A., Hastings, R.P.: Sexuality and sex education of adolescents with intellectual disability: mothers’ attitudes, experiences, and support needs. Intellect. Dev. Disabil. 50(2), 140–154 (2012)

    Article  PubMed  Google Scholar 

  27. 27.

    Carmody, M., Ovenden, G.: Putting ethical sex into practice: sexual negotiation, gender and citizenship in the lives of young women and men. J. Youth Stud. 16(6), 792–807 (2013)

    Article  Google Scholar 

  28. 28.

    Carmody, M.: Sex, Ethics, and Young People. Palgrave Macmillan, New York (2015)

    Book  Google Scholar 

  29. 29.

    Johnson, B., et al.: ‘It’s Not all About Sex’. Young People’s Views About Sexuality and Relationships Education. Report of Stage 1 of the Engaging Young People in Sexuality Education Research Project. University of South Australia, Adelaide (2016)

    Google Scholar 

  30. 30.

    Löfgren-Mårtenson, L.: “I want to do it right!” A pilot study of swedish sex education and young people with intellectual disabilities. Sex. Disabil. 30(2), 209–225 (2012)

    Article  Google Scholar 

  31. 31.

    CHANGE: Talking About Sex and Relationships: The Views of Young People with Learning Disabilities. CHANGE, Leeds (2010)

    Google Scholar 

  32. 32.

    Hillier, L., Johnson, K., Harrison, H.: Sex, secrets and desire: people with intellectual disabilities talk about their lives. Intellect. Disabil. Aust. 23(1), 6–8 (2002)

    Google Scholar 

  33. 33.

    Frawley, P., Bigby, C.: “I’m in their shoes”: experiences of peer educators in sexuality and relationship education. J. Intellect. and Dev. Disabil. 39(2), 167–176 (2014)

    Article  Google Scholar 

  34. 34.

    Patton, M.Q.: Qualitative Research and Evaluation Methods, 3rd edn. Sage, Thousand Oaks (2002)

    Google Scholar 

  35. 35.

    Galea, J., et al.: The assessment of sexual knowledge in people with intellectual disability. J. Intellect. Dev. Disabil. 29(4), 350–365 (2004)

    Article  Google Scholar 

  36. 36.

    Wilson, N.J., Frawley, P.: Transition staff discuss sex education and support for young men and women with intellectual and developmental disability. J. Intellect. Dev. Disabil., 1–13 (2016)

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Acknowledgments

This research was funded by the 2012 Australasian Society for Intellectual Disability (ASID) research prize. The views expressed herein are those of the authors.

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Correspondence to Patsie Frawley.

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Frawley, P., Wilson, N.J. Young People with Intellectual Disability Talking About Sexuality Education and Information. Sex Disabil 34, 469–484 (2016). https://doi.org/10.1007/s11195-016-9460-x

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Keywords

  • Intellectual disability
  • Sexuality and relationships
  • Young people
  • Transition to
  • Adulthood
  • Sexuality education
  • Gender