The Unintended Invisible Hand: A Conceptual Framework for the Analysis of the Sexual Lives of People with Intellectual Disabilities

  • Angus Lam
  • Matthew Yau
  • Richard C. Franklin
  • Peter A. Leggat
Original Paper


People with intellectual disabilities (PID) share the same needs for affectionate and intimate relationships as other people. In this study, a review of the literature was performed to (a) examine the opinions reported in the peer-reviewed literature regarding the sexual experiences of PID and (b) identify factors that contribute to the promotion or restriction of sexual expression by PID. Sixteen qualitative articles were identified from electronic databases and reviewed. People with PID were found to exhibit the same spectrum of sexual life as the general population, and three major themes were identified: abstinence, regulation, and autonomy. Some PID preferred to abstain from sex, whereas others considered engagement in sexual activity to have a hand that affects and influences the rights of PID to engage in sexual activity. Further empirical research on the empowerment of sexual expression of PID and the formation of the unintended invisible hand is needed, as this will provide information to families and welfare systems and thus enhance the self-determination and rights of PID to pursue sexual expression and satisfaction.


Intellectual disabilities Parents and service providers Sexuality Sexual expression Self-determination Hong Kong 


Compliance with Ethical Standards

Conflict of interest

All Authors declares that they have no conflict of interest.

Ethical Approval

This article does not contain any studies with human participants performed by any of the authors.


  1. 1.
    Rushbrooke, E., Murray, C., Townsend, S.: The experiences of intimate relationships by people with intellectual disabilities: a qualitative study. J. Appl. Res. Intellect. Disabil. 27, 531–541 (2014). CrossRefGoogle Scholar
  2. 2.
    DiGiulio, G.: Sexuality and people living with physical or developmental disabilities: a review of key issues. Can. J. Hum. Sex. 12, 53–68 (2003)Google Scholar
  3. 3.
    American Association on Intellectual and Developmental Disabilities (AAIDD). Sexualty: joint position statement of AAIDD and the arc. (2013). Accessed 28 July 2017
  4. 4.
    Evans, D.S., McGuire, B.E., Healy, E., Carley, S.N.: Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives. J. Intellect. Disabil. Res. 53, 913–921 (2009). CrossRefGoogle Scholar
  5. 5.
    Tepper, M.S.: The missing discourse of pleasure. Sex. Disabil. 18, 283–290 (2000). CrossRefGoogle Scholar
  6. 6.
    Turner, G.W., Crane, B.: Pleasure is paramount: adults with intellectual disabilities discuss sensuality and intimacy. Sexualities 19, 677–697 (2016). CrossRefGoogle Scholar
  7. 7.
    Crawford, M.J., Rutter, D., Manley, C., Weaver, T., Bhui, K., Fulop, N., Tyrer, P.: Systematic review of involving patients in the planning and development of healthcare. Br. Med. J. 325, 1263–1267 (2002). CrossRefGoogle Scholar
  8. 8.
    Schalock, R.L., Luckasson, R.A., Shogren, K.A.: The renaming of mental retardation: understanding the change to the term intellectual disability. Intellect. Dev. Disabil. 45, 116–124 (2007).;2 CrossRefGoogle Scholar
  9. 9.
    Moher, D., Liberati, A., Tetzlaff, J., Altman, D.G.: Preferred Reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 6, 1–6 (2009). CrossRefGoogle Scholar
  10. 10.
    Public Health Resource Unit. Critical Appraisal Skills Programme (CASP). (2006). Accessed 10 July 2017
  11. 11.
    Braun, V., Clarke, V.: Using thematic analysis in psychology. Qual. Res. Psychol. 3, 77–101 (2006). CrossRefGoogle Scholar
  12. 12.
    Holloway, I., Todres, L.: The status of method: flexibility, consistency and coherence. Qual. Res. 3, 345–357 (2003). CrossRefGoogle Scholar
  13. 13.
    Yau, M.K.S., Ng, G.S.M., Lau, D.Y.K., Chan, K.S., Chan, J.S.K.: Exploring sexuality and sexual concerns of adult persons with intellectual disability in a cultural context. Br. J. Dev. Disabil. 55, 97–108 (2009). CrossRefGoogle Scholar
  14. 14.
    Schaafsma, D., Kok, G., Stoffelen, J.M.T., Curfs, L.M.G.: People with intellectual disabilities talk about sexuality: implications for the development of sex education. Sex. Disabil. 35, 21–38 (2017). CrossRefGoogle Scholar
  15. 15.
    Fitzgerald, C., Withers, P.: ‘I don’t know what a proper woman means’: what women with intellectual disabilities think about sex, sexuality and themselves. Br. J. Learn. Disabil. (2011). Google Scholar
  16. 16.
    Sullivan, F., Bowden, K., Mckenzie, K., Quayle, E.: ‘Touching people in relationships’: a qualitative study of close relationships for people with an intellectual disability. J. Clin. Nurs. 22, 3456–3466 (2013). CrossRefGoogle Scholar
  17. 17.
    Wilkinson, V.J., Theodore, K., Raczka, R.: ‘As normal as possible’: sexual identity development in people with intellectual disabilities transitioning to adulthood. Sex. Disabil. 33, 93–105 (2015). CrossRefGoogle Scholar
  18. 18.
    Bernert, D.J.: Sexuality and disability in the lives of women with intellectual disabilities. Sex. Disabil. 29, 129–141 (2011). CrossRefGoogle Scholar
  19. 19.
    Bernert, D.J., Odletree, R.J.: Women with intellectual disabilities talk about their perceptions of sex. J. Intellect. Disabil. Res. 57, 240–249 (2013). CrossRefGoogle Scholar
  20. 20.
    Björnsdóttir, K., Stefánsdóttir, Á., Stefánsdóttir, G.V.: People with intellectual disabilities negotiate autonomy, gender and sexuality. Sex. Disabil. 35, 295 (2017). CrossRefGoogle Scholar
  21. 21.
    Fish, R.: ‘They’ve said I’m vulnerable with men’: doing sexuality on locked wards. Sexualities 19, 641–658 (2016). CrossRefGoogle Scholar
  22. 22.
    Tuner, G.W., Crane, B.: Sexually silenced no more, adults with learning disabilities speak up: a call to action for social work to frame sexual voice as a social justice issue. Br. J. Soc. Work 0, 1–18 (2016). Google Scholar
  23. 23.
    McClelland, A., Flicker, S., Nepveux, D., Nixon, S., Vo, T., Wilson, C., Marshall, Z.: Seeking safer sexual spaces: queer and trans young people labeled with intellectual disabilities and the paradoxical risks of restriction. J. Homosex. 59, 808–819 (2012). CrossRefGoogle Scholar
  24. 24.
    Healy, E., McGuire, B.E., Evans, D.S., Carley, S.N.: Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives. J. Intellect. Disabil. Res. 53, 905–912 (2009). CrossRefGoogle Scholar
  25. 25.
    Frawley, P., Wilson, N.J.: Young people with intellectual disability talking about sexuality education and information. Sex. Disabil. 34, 469–484 (2016). CrossRefGoogle Scholar
  26. 26.
    Yacoub, E., Hall, I.: The sexual lives of men with mild learning disability: a qualitative study. Br. J. Learn. Disabil. 37, 5–11 (2008). CrossRefGoogle Scholar
  27. 27.
    Rushbrooke, E., Murray, C., Townsend, S.: What difficulties are experienced by caregivers in relation to the sexuality of people with intellectual disabilities? A qualitative meta-synthesis. Res. Dev. Disabil. 35, 871–886 (2014). CrossRefGoogle Scholar
  28. 28.
    Connell, R.W.: Masculinities, 2nd edn. Polity Press, Cambridge (1995)Google Scholar
  29. 29.
    Craft, A.: Sexuality and mental retardation: a review of the literature. In: Craft, A., Craft, M. (eds.) Sex Education and Counseling for Mentally Handicapped People, pp. 1–37. Kent, Costello (1997)Google Scholar
  30. 30.
    Galea, J., Butler, J., Lacono, T., Leighton, D.: The assessment of sexual knowledge in people with intellectual disability. J. Intellect. Dev. Disabil. 29(4), 350–365 (2004). CrossRefGoogle Scholar
  31. 31.
    McCarthy, M.: Contraception and women with intellectual disabilities. J. Appl. Res. Intellect. Disabil. 22, 363–369 (2009). CrossRefGoogle Scholar
  32. 32.
    Krahn, G.L., Walker, D.K., Correa-De-Araujo, R.: Persons with disabilities as an unrecognized health disparity population. Am. J. Public Health 105, S198–S206 (2015). CrossRefGoogle Scholar
  33. 33.
    Agmo, A.: Functional and Dysfunctional Sexual Behavior: A Synthesis of Neuroscience and Comparative Psychology. Academic Press, San Diego (2007)Google Scholar
  34. 34.
    Shannaham, D.S.: Sexual ethics, marriage, and sexual autonomy: the landscapes for Muslim at and lesbian, gay, bisexual, and transgendered Muslims. Contemp. Islam 3(1), 59–78 (2009). CrossRefGoogle Scholar
  35. 35.
    Dailey, D.: Sexual expression and ageing. In: Berghorn, D., Schafer, D. (eds.) The Dynamics of Ageing: Original Essays on the Processes and Experiences of Growing Old, pp. 311–330. Westview Press, Boulder (1981)Google Scholar
  36. 36.
    Couwenhoven, T.: Sexuality education: building on the foundation of healthy attitudes. Disabil. Solut. 4, 1–19 (2001)Google Scholar
  37. 37.
    Stephenson, K.R., Meston, C.M.: The conditional importance of sex: exploring the association between sexual well-being and life satisfaction. J. Sex Marital Ther. 41, 25–38 (2015). CrossRefGoogle Scholar
  38. 38.
    World Health Organization (WHO). Sexual and reproductive health. (2010). Accessed 1 Sept 2017
  39. 39.
    McGuire, B.E., Bayley, A.A.: Relationships, sexuality and decision making capacity in people with an intellectual disability. Curr. Opin. Psychiatr. 24, 398–402 (2011). CrossRefGoogle Scholar
  40. 40.
    Alphen, L.M., Dijker, A.J., Bos, A.E.R., Borne, B.W., Curfs, L.M.G.: Explaining not-in-my-backyard responses to different social groups: the role of group characteristics and emotions. Soc. Psychol. Personal. Sci. 2, 245–252 (2011). CrossRefGoogle Scholar
  41. 41.
    McConnell, D., Llewellyn, G.: Stereotypes, parents with intellectual disability and child protection. J. Soc. Welf. Fam. Law 24(3), 297–317 (2002). CrossRefGoogle Scholar
  42. 42.
    Björnsdóttir, K.: Resisting the reflection: identity in inclusive life history research. Disabil. Stud. Q. 30, 1–17 (2009). Google Scholar
  43. 43.
    Dyer, K., Nair, R.D.: Why don’t healthcare professionals talk about sex? A systematic review of recent qualitative studies conducted in the United Kingdom. J. Sex. Med. 10(11), 2658–2670 (2013). CrossRefGoogle Scholar
  44. 44.
    Starke, M., Rosqvist, H.B., Kuosmanen, J.: Eternal children? Professionals’ constructions of women with an intellectual disability who are victims of sexual crime. Sex. Disabil. 34, 315–328 (2016). CrossRefGoogle Scholar
  45. 45.
    Murphy, G.H., O’Callaghan, A.: Capacity of adults with intellectual disabilities to consent to sexual relationships. Psychol. Med. 34, 1347–1357 (2004)CrossRefGoogle Scholar
  46. 46.
    Shogren, K.A., Wehmeyer, M.L., Reese, R.M., O’Hara, D.: Promoting self-determination in health and medical care: a critical component of addressing health disparities in people with intellectual disabilities. J. Policy Pract. Intellect. Disabil. 3, 105–113 (2006). CrossRefGoogle Scholar
  47. 47.
    Chinn, D.: Review of interventions to enhance the health communication of people with intellectual disabilities: a communicative health literacy perspective. J. Appl. Res. Intellect. Disabil. 30, 345–359 (2017). CrossRefGoogle Scholar
  48. 48.
    Whitehouse, M.A., McCabe, M.P.: Sex education programs for people with intellectual disability: How effective are they? Educ. Train. Ment. Retard. Dev. Disabil. 32, 229–240 (1997)Google Scholar
  49. 49.
    Schaafsma, D., Stoffelen, J.M.T., Kok, G., Curfs, L.M.G.: Exploring the development of existing sex education programmes for people with intellectual disabilities: an intervention mapping approach. J. Appl. Res. Intellect. Disabil. 26, 157–166 (2013). CrossRefGoogle Scholar
  50. 50.
    Abbott, D., Howarth, J.: Still off limits? Staff views on supporting gay, lesbian and bisexual people with intellectual disabilities to develop sexual and intimate relationships. J. Appl. Res. Intellect. Disabil. 20, 116–126 (2007). CrossRefGoogle Scholar
  51. 51.
    Wehmeyer, M.L.: Beyond self-determination: causal agency theory. J. Dev. Phys. Disabil. 16, 337–359 (2004). CrossRefGoogle Scholar
  52. 52.
    Taleporos, G., McCabe, M.: Physical disability and sexual esteem. Sex. Disabil. 19, 131–148 (2001). CrossRefGoogle Scholar
  53. 53.
    Swango-Wilson, A.: Systems theory and the development of sexual identity for individuals with intellectual/developmental disability. Sex. Disabil. 28, 157–164 (2010). CrossRefGoogle Scholar
  54. 54.
    Kennedy, M.A., Gorzalka, B.B.: Asian and non-Asian attitudes toward rape, sexual harassment, and sexuality. Sex Roles 46, 227–238 (2002). CrossRefGoogle Scholar
  55. 55.
    Cheng, Y., Lou, C., Gao, E., Emerson, M.R., Zabin, L.S.: The relationship between external contact and unmarried adolescents’ and young adults’ traditional beliefs in three east asian cities: a cross-sectional analysis. J. Adolesc. Health 50, S4–S11 (2012). CrossRefGoogle Scholar
  56. 56.
    Rudy, D., Grusec, J.E.: Authoritarian parenting in individualist and collectivist groups: associations with maternal emotion and cognition and children’s self-esteem. J. Fam. Psychol. 20, 68–78 (2006). CrossRefGoogle Scholar
  57. 57.
    Keshavarz, S., Baharudin, R.: Parenting style in a collectivist culture of Malaysia. Eur. J. Soc. Sci. 10, 66–73 (2009)Google Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Angus Lam
    • 1
    • 2
  • Matthew Yau
    • 1
    • 2
  • Richard C. Franklin
    • 1
  • Peter A. Leggat
    • 1
  1. 1.College of Public Health Medical and Veterinary SciencesJames Cook UniversityTownsvilleAustralia
  2. 2.School of Medical and Health SciencesTung Wah CollegeMongkokChina

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