Least Spoken Most Curious: Sexuality in Adults with Intellectual Disability

Öz

Sexuality is a phenomenon affected by socio-cultural norms and because sexuality is still taboo in many cultures, research on this issue is limited. Though sexuality is very important issue in adults with intellectual disabilities. The purpose of this study is to determine what skills are teached in the context of sexuality in studies and how these individuals perceive sexuality. The study is planned as a review study and firstly reveal that how the skills studied in the research on sexual life of adults with intellectual disabilities are categorized, and relationship between these skills and sexuality skills. Secondly, examined how adults with intellectual disabilities perceive sexuality based on literature. According to the findings of the research, independent life skills were studied in the context of sexuality skills with adults with intellectual disabilities. In the studies on literature, it was seen that adults with intellectual disabilities had positive and negative perceptions of sexuality. Positive perceptions of sexuality, desire to establish close relationships with the opposite sex, desire to exhibit sexual behaviors, desire to experience sexuality. Negative perceptions of sexuality are generally manifested by feelings of bad sexuality, fear, anxiety and reservations due to reasons such as sexual abuse, harassment, coercion, unwanted behaviors, unauthorized contact, and exposure to bad sexual discourse. Another perception of sexuality, adults with intellectual disabilities can not make sense of sexuality due to lack of information about sexuality. Finally, in the light of the research findings, recommendations were made for the practice and further researches regarding the sexual life of adults with intellectual disabilities.

Anahtar Kelimeler

• Adults with intellectual disability,perception of sexuality,sexuality skills,sexual education

En Az Konuşulan En Çok Merak Edilen: Zihin Yetersizliği Olan Yetişkinlerde Cinsellik

Öz

Zihin yetersizliği olan bireylerin özellikle ergenlik döneminden itibaren en çok desteğe gereksinim duydukları ve ailelerin konuşmaya en fazla çekindiği konu cinselliktir. Cinsellik sosyo-kültürel normlardan etkilenen bir olgudur ve pek çok kültürde halen tabu olarak görülebilmektedir. Nitekim Türkiye’de de özel eğitim alanında en az konuşulan konulardan biridir. Bu nedenle ülkemizde zihin yetersizliği olan yetişkinlerin cinselliğine yönelik araştırmalar oldukça sınırlıdır. Türkiye alanyazınına katkı getirecek bu çalışmanın amacı alanyazında zihin yetersizliği olan yetişkinlerde cinsellik eğitimi kapsamında hangi becerilerin çalışıldığını ve bu bireylerin cinselliği nasıl algıladıklarını ortaya koymak, ilgili araştırma bulguları doğrultusunda zihin yetersizliği olan yetişkinlerin cinsellik eğitimine ve cinsel yaşamına ilişkin yürütülen araştırmalara ve uygulamalara yönelik öneriler geliştirmektir. Çalışma bir derleme çalışması olarak planlanmış olup, ilk olarak zihin yetersizliği olan yetişkinlerin cinsellik eğitimi kapsamında çalışılan becerilerin nasıl sınıflandırıldığı ve bu becerilerin cinsellik becerileriyle olan ilişkisi ortaya konmuştur. İkinci olarak araştırmalarda bu bireylerin cinselliği nasıl algıladıkları incelenmiş, cinsellik eğitiminin önemi ve bu süreçte karşılaştıkları sorunlar paylaşılmıştır. Son olarak araştırma bulguları ışığında zihin yetersizliği olan yetişkinlerin cinsel yaşamına ilişkin uygulamaya ve ileri araştırmalara yönelik önerilerde bulunulmuştur.

Anahtar Kelimeler

• Zihin yetersizliği olan yetişkinler,cinsellik algısı,cinsellik becerileri,cinsellik eğitimi

Kaynakça

1. Akın Bülbül, I. (2012). Zihinsel yetersizlikten etkilenmiş erkek ergenlere ebeveynleri aracılığıyla uygun mastürbasyon yapma becerisinin kazandırılmasında eşzamanlı ipucuyla öğretimin etkililiği. Yayımlanmış yüksek lisans tezi. Bolu Abant İzzet Baysal Üniversitesi, Eğitim Bilimleri Enstitüsü.
2. Akrami, L., & Davudi, M. (2014). Comparison of behavioral and sexual problems between intellectually disabled and normal adolescent boys during puberty in Yazd, Iran. Iranian journal of Psychiatry and Behavioral Sciences, 8(2), 68.
3. Arnett, J. J. (2010). Adolescence and emerging adulthood. (4. Baskı). Pearson Education Limited.
4. Azzopardi‐Lane, C., & Callus, A. M. (2015). Constructing sexual identities: people with intellectual disability talking about sexuality. British Journal of Learning Disabilities, 43(1), 32-37.
5. Balogh, R., Bretherton, K., Whibley, S., Berney, T., Graham, S., Richold, P., ... & Firth, H. (2001). Sexual abuse in children and adolescents with intellectual disability. Journal of Intellectual Disability Research, 45(3), 194-201.
6. Bennett, C., & Coyle, A. (2007). A minority within a minority: Experiences of gay men with intellectual disabilities. Out in Psychology: Lesbian, Gay, Bisexual, Trans and Queer Perspectives, 125-45.
7. Bernert, D. J. (2011). Sexuality and disability in the lives of women with intellectual disabilities. Sexuality and Disability, 29(2), 129-141.
8. Bernert, D. J., & Ogletree, R. J. (2013). Women with intellectual disabilities talk about their perceptions of sex. Journal of Intellectual Disability Research, 57(3), 240-249.

9. Bilgiç, E. (2015). Zihin engelli ergenlerin annelerinin cinsel eğitimle ilgili görüşleri. Yayımlanmış yüksek lisans tezi. İstanbul: Nişantaşı Üniversitesi Sosyal Bilimler Enstitüsü Psikoloji Anabilim Dalı.
10. Bowman, R. A., Scotti, J. R., & Morris, T. L. (2010). Sexual abuse prevention: A training program for developmental disabilities service providers. Journal of Child Sexual Abuse, 19(2), 119-127.
11. Bozdemir, N., & Özcan, S. (2011). Cinselliğe ve cinsel sağlığa genel bakış. Turkish journal of Family medicine and primary care, 5(4), 37-46.
12. Brown, M., & McCann, E. (2017). Mediated pathways, negotiated identities: a critical phenomenological analysis of the experience of sexuality in the context of intellectual disability. Journal of Research in Nursing, 22(8), 615-617.
13. Brown, M., & 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.
14. Cangöl, E., Karaca, P., & Aslan, E. (2013). Engelli bireylerde cinsel sağlık. Androloji Bülteni, 53(1), 141-146.
15. Chrastina, J., & Večeřová, H. (2018). Supporting Sexuality in Adults with Intellectual Disability—A Short Review. Sexuality and Disability, 1-14.https://doi.org/10.1007/s11195-018-9546-8.
16. Cinsel Sağlık Enstitüsü Derneği (CİSED). Cinsel mitler. https://www.cised.org.tr/icerik/146/cinsel-mitler. (Erişim Tarihi: 01.11.19).
17. Cole, S. S. (1984). Facing the challenges of sexual abuse in persons with disabilities. Sexuality and Disability, 7(3-4), 71-88.
18. Coleman, E. (2007). Creating a sexually healthier world through effective public policy. International Journal of Sexual Health, 19(3), 5-24.
19. Conod, L., & Servais, L. (2008). Sexual life in subjects with intellectual disability. Salud Pública de México, 50, 230-238.
20. Dekker, A., Safi, M., Echteld, M. A., & Evenhuis, H. M. (2014). Sexuality and contraception in young people with mild intellectual disability; a qualitative study on the basis of 28 interviews. Nederlands Tijdschrift Voor Geneeskunde, 158, A8010-A8010.
21. DeLamater, J. and Plante, R. F. (2015). The sociological study of sexuality: an introduction. J. DeLamater and R. F. Plante (Ed.), Handbook of the sociology of sexualities, in (pp.1-7). USA: Springer.
22. Enow, H., Nagalingam, P., Singh, R., & Thalitaya, M. D. (2015). Need for a comprehensive sex and relationship education programme for adults with learning disability. Psychiatria Danubina, 27(1), 465-467.
23. Ersoy, G. (2005). Zihin özürlü ergen kız öğrencilere maket üzerinde menstüral bakım becerisinin kazandırılmasında davranış öncesi ipucu ve sınamayla öğretimin etkileri. Yayımlanmış Yüksek Lisans Tezi. Anadolu Üniversitesi Eğitim Bilimleri Enstitüsü.
24. Firth, H., Balogh, R., Berney, T., Bretherton, K., Graham, S., & Whibley, S. (2001). Psychopathology of sexual abuse in young people with intellectual disability. Journal of Intellectual Disability Research, 45(3), 244-252.
25. Fitzgerald, C., & 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.
26. Frawley, P., & Wilson, N. J. (2016). Young people with intellectual disability talking about sexuality education and information. Sexuality and Disability, 34(4), 469-484.
27. Friedman, C., Arnold, C. K., Owen, A. L., & Sandman, L. (2014). “Remember our voices are our tools:” Sexual self-advocacy as defined by people with intellectual and developmental disabilities. Sexuality and Disability, 32(4), 515-532.
28. Galea, J., Butler, J., Iacono, T., & Leighton, D. (2004). The assessment of sexual knowledge in people with intellectual disability. Journal of Intellectual and Developmental Disability, 29(4), 350-365.
29. Gardiner, T., & Braddon, E. (2009). ‘A Right to Know’. Facilitating a relationship and sexuality programme for adults with intellectual disabilities in Donegal. British Journal of Learning Disabilities, 37(4), 327-329.
30. Garwood, M., & McCabe, M. P. (2000). Impact of sex education programs on sexual knowledge and feelings of men with a mild intellectual disability. Education and Training in Mental Retardation And Developmental Disabilities, 269-283.
31. Gougeon, N. A. (2009). Sexuality education for students with intellectual disabilities, a critical pedagogical approach: outing the ignored curriculum. Sex Education, 9(3), 277-291.
32. Greenwood, N. W., & Wilkinson, J. (2013). Sexual and reproductive health care for women with intellectual disabilities: a primary care perspective. International Journal of Family Medicine, 2013, 1-8.
33. Grossman, J. M., Frye, A., Charmaraman, L., & Erkut, S. (2013). Family homework and school‐based sex education: delaying early adolescents' sexual behavior. Journal of School Health, 83(11), 810-817.
34. Gürbüz, S. (2018). Ergenlik dönemindeki zihin yetersizliği olan bireylerin cinsel gelişim özelliklerinin ebeveyn görüşleri ile değerlendirilmesi: Bir ölçek geliştirme çalışması. Yayımlanmış yüksek lisans tezi. Bolu Abant İzzet Baysal Üniversitesi, Eğitim Bilimleri Enstitüsü.
35. Hanass-Hancock, J., Nene, S., Johns, R., & Chappell, P. (2018). The impact of contextual factors on comprehensive sexuality education for learners with intellectual disabilities in South Africa. Sexuality and Disability, 36(2), 123-140.
36. Hayashi, M., Arakida, M., & Ohashi, K. (2011). The effectiveness of a sex education program facilitating social skills for people with intellectual disability in Japan. Journal of Intellectual and Developmental Disability, 36(1), 11-19.
37. İnci, Y. (2010). Çocukların cinsel suiistimali ve istismarın sosyo-kültürel ve ekonomik boyutları. Yayımlanmış doktora tezi. Ankara: Ankara Üniversitesi Sosyal Bilimler Enstitüsü Antropoloji Anabilim Dalı.
38. İşler, A., Taş, F., Beytut, D., & Conk, Z. (2009). Sexuality in adolescents with intellectual disabilities. Sexuality and Disability, 27(1), 27-34.
39. Kadıoğlu, H. (2005). Yetişkin ve akran liderli cinsel eğitimin ilköğretim 8. sınıf öğrencilerinin cinsellikle ilgili bilgi ve tutumları üzerindeki etkileri. Yayımlanmış doktora tezi. İstanbul: Marmara Üniversitesi Sağlık Bilimleri Enstitüsü.
40. Keilty, J., & Connelly, G. (2001). Making a statement: An exploratory study of barriers facing women with an intellectual disability when making a statement about sexual assault to police. Disability & Society, 16(2), 273-291.
41. Kijak, R. (2013). The sexuality of adults with intellectual disability in Poland. Sexuality and Disability, 31(2), 109-123.
42. Kochhar-Bryant, C. A., & Greene, G. (2009). Pathways to successful transition for youth with disabilities: A developmental process. Merrill/Pearson.
43. Konuk Er, R., Büyükbayraktar, Ç. G., & Kesici, Ş. (2016). Özel eğitime ihtiyacı olan öğrencilere yönelik cinsel eğitim programının geliştirilmesi. Turkish Journal of Education, 5(4).
44. Küçük, S. (2012). Hafif zihinsel engelli çocuklar ve ebeveynlerinde cinsel istismardan korunma konusunda farkındalık yaratma. Yayımlanmış doktora tezi. Kayseri: Erciyes Üniversitesi Sağlık Bilimleri Enstitüsü.
45. Kuloğlu-Aksaz, N. ve Fırat, A. (1992). Ergenlik Çağındaki Özürlü Bireylere Menstürasyon Döneminde Gerekli Olan Temizlik Alışkanlıklarının Kazandırılması. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 1(02), 37-41.
46. Kymlicka, W. (1995). Multicultural citizenship: A liberal theory of minority rights. Clarendon Press.
47. Lafferty, A., McConkey, R., & Simpson, A. (2012). Reducing the barriers to relationships and sexuality education for persons with intellectual disabilities. Journal of Intellectual Disabilities, 16(1), 29-43.
48. Leutar, Z., & Mihoković, M. (2007). Level of knowledge about sexuality of people with mental disabilities. Sexuality and Disability, 25(3), 93-109.
49. Löfgren-Mårtenson, L. (2012). “I want to do it right!” A pilot study of Swedish sex education and young people with intellectual disabilities. Sexuality and Disability, 30(2), 209-225.
50. Mandan-Sürücü, S. (2009). 11-17 yaş orta düzey zihin engelli kız ergenlerin temel cinsel bilgi ve cinsel istismarı algılamalarının belirlenmesi. Yayımlanmış yüksek lisans tezi. İstanbul: Marmara Üniversitesi, Eğitim Bilimleri Enstitüsü.
51. Mayer, S. (2003). What is a “Disadvantaged Group?”. Effective communities Project. USA: Minneapolis.
52. McCabe, M. P. (1999). Sexual knowledge, experience and feelings among people with disability. Sexuality and Disability, 17(2), 157-170.
53. McCabe, M. P., & Cummins, R. A. (1996). The sexual knowledge, experience, feelings and needs of people with mild intellectual disability. Education and Training in Mental Retardation and Developmental Disabilities, 13-21.
54. McCarthy, M. (2009). Contraception and women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 22(4), 363-369.
55. Medina-Rico, M., López-Ramos, H., & Quiñonez, A. (2018). Sexuality in people with intellectual disability: Review of literature. Sexuality and Disability, 36(3), 231-248.
56. Merriam, S. B. and Clark, M. C. (2006). Learning and development: The connection in adulthood. C. Hoare (Ed.), Handbook of adult development and learning, in (pp. 27-52). Oxford University.
57. Morris, L. E. and Klunk, C. D. (2016). Revisiting adult development: Changing capabilities, perspectives and worldviews. Adult Learning, 27(1), 3-6.
58. Murphy, G. H., & O'Callaghan, A. L. I. (2004). Capacity of adults with intellectual disabilities to consent to sexual relationships. Psychological Medicine, 34(7), 1347-1357.
59. OECD. (2013). OECD Skills Outlook 2013: First Results from the Survey of Adult Skills. OECD Publishing. Retrieved fromhttp://dx.doi.org/10.1787/9789264204256-en.
60. Öncül, N., & Yücesoy Özkan, Ş. (2010). Orta ve ileri düzeyde zihin yetersizliği olan yetişkinlere videoyla model olma kullanılarak günlük yaşam becerilerinin öğretilmesi. Anadolu Üniversitesi Sosyal Bilimler Dergisi, 10(3), 143-156.
61. Parchomiuk, M. (2012). Specialists and sexuality of individuals with disability. Sexuality and Disability, 30(4), 407-419.
62. Parchomiuk, M. (2013). Model of intellectual disability and the relationship of attitudes towards the sexuality of persons with an intellectual disability. Sexuality and Disability, 31(2), 125-139.
63. Perlin, M. L. & Lynch, A. J. (2016). Sexuality, disability and the law. New York: Palgrave MacMillian.
64. Pownall, J. D., Jahoda, A., Hastings, R., & Kerr, L. (2011). Sexual understanding and development of young people with intellectual disabilities: Mothers' perspectives of within-family context. American journal on intellectual and developmental disabilities, 116(3), 205-219.
65. Quinn, C., & Browne, G. (2009). Sexuality of people living with a mental illness: a collaborative challenge for mental health nurses. International Journal of Mental Health Nursing, 18(3), 195-203.
66. Rushbrooke, E., Murray, C., & 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.
67. Schaafsma, D., Kok, G., Stoffelen, J. M., Van Doorn, P., & Curfs, L. M. (2014). Identifying the important factors associated with teaching sex education to people with intellectual disability: A cross-sectional survey among paid care staff. Journal of Intellectual and Developmental Disability, 39(2), 157-166.
68. Scutella, R., Wilkins, R., & Horn, M. (2009). Measuring poverty and social exclusion in Australia: A proposed multidimensional framework for identifying socio-economic disadvantage (No. wp2009n04). Melbourne Institute of Applied Economic and Social Research, The University of Melbourne.
69. Shandra, C. L., & Chowdhury, A. R. (2012). The first sexual experience among adolescent girls with and without disabilities. Journal of youth and adolescence, 41(4), 515-532.
70. Swango-Wilson, A. (2011). Meaningful sex education programs for individuals with intellectual/developmental disabilities. Sexuality and Disability, 29(2), 113-118.
71. Tarhan, N. (2004). Aile yaşamı ve cinsel sağlık programının zihinsel engelli kız çocukların cinsel bilgi düzeylerine etkisi. Yayımlanmış doktora tezi. Ankara: Ankara Üniversitesi Sosyal Bilimler Enstitüsü.
72. Thompson, V. R., Stancliffe, R. J., Wilson, N. J., & Broom, A. (2016). The content, usefulness and usability of sexual knowledge assessment tools for people with intellectual disability. Sexuality and Disability, 34(4), 495-512.
73. Tice, C. J., & Harnek Hall, D. M. (2008). Sexuality education and adolescents with developmental disabilities: assessment, policy, and advocacy. Journal of Social Work in Disability & Rehabilitation, 7(1), 47-62.
74. Turner, G. W., & Crane, B. (2016). Pleasure is paramount: Adults with intellectual disabilities discuss sensuality and intimacy. Sexualities, 19(5-6), 677-697.
75. Van Schrojenstein Lantman‐de Valk, H. M. J., Rook, F., & Maaskant, M. A. (2011). The use of contraception by women with intellectual disabilities. Journal of Intellectual Disability Research, 55(4), 434-440.
76. Ward, B. (2000). Seks ve yaşam. (5. Baskı). Çev. Tektaş, N., İstanbul: Remzi Kitabevi.
77. Wilkinson, V. J., Theodore, K., & Raczka, R. (2015). ‘As normal as possible’: sexual identity development in people with intellectual disabilities transitioning to adulthood. Sexuality and Disability, 33(1), 93-105.
78. Wilson, N. J., Parmenter, T. R., Stancliffe, R. J., & Shuttleworth, R. P. (2011). Conditionally sexual: Men and teenage boys with moderate to profound intellectual disability. Sexuality and Disability, 29(3), 275-289.
79. World Association for Sexual Health. (2008). Sexual health for the millennium: A declaration and technical document. MN, USA: World Association for Sexual Health.
80. World Health Organization (WHO). (2006). Defining sexual health: Report of a technical consultation on sexual health 28–31 January 2002, Geneva.
81. World Health Organization (WHO). (2019). Adolescent health and development. Retrieved from http://www.searo.who.int/entity/child_adolescent/topics/adolescent_health/en/(Accessed Date: 01.10.2019).
82. Yıldırım, Y. F. (2011). Dezavantajlı bir grup olarak engellilere yönelik eğitim faaliyetleri: İSMEK Örneği. Yayımlanmış yüksek lisans tezi. İstanbul Üniversitesi Sosyal Bilimler Enstitüsü Çalışma Ekonomisi ve Endüstri İlişkileri Anabilim Dalı.