Why do 'we' perform surgery on newborn intersexed children?: The phenomenology of the parental experience of having a child with intersex anatomies

Feminist Theory

Volumn 10, Issue 3, 2009, Pages 359-377

  Zeiler, Kristin ^a   Wickström, Anette ^a  

^a LINKÖPING UNIVERSITY   (Sweden)

Author keywords

Cultural norms; Dys appearance; Intersex; Parents' experiences; Phenomenology of the body

Indexed keywords

EID: 70449369653     PISSN: 14647001     EISSN: 17412773     Source Type: Journal    
DOI: 10.1177/1464700109343258     Document Type: Article

References (42)

1. Ahmed, S. (2006) Queer Phenomenology: Orientations, Objects, Others. London: Duke University Press.
2. Ahmed, S. (2007) A Phenomenology of Whiteness, Feminist Theory 8: 149-68.
3. Alderson, J., A. Madill and A. Balen (2004) Fear of Devaluation: Understanding the Experience of Intersexed Women with Androgen Insensitivity Syndrome, British Journal of Health Psychology 9: 81-100.
4. Andrews, J. (2006) Vision, Violence and the Other: A Merleau-Pontean Ethics, pp. 167-82 in D. Olkowski and G. Weiss (eds) Feminist Interpretations of Maurice Merleau-Ponty. University Park, PA: Pennsylvania State University Press.
5. Beauvoir, S. de (1948) The Ethics of Ambiguity. New York: Citadel Press.
6. Beauvoir, S. de ([1949] 2003) The Second Sex. New York: Alfred A. Knopf.
7. Bergström, H. (2001) När kön är ett beslut. Om föräldrar till barn med oklar könstillhörighet, unpublished Master's thesis, University of Stockholm.
8. Blackless, M., A. Charuvastra, A. Derryck, A. Fausto-Sterling, K. Luzanne and E. Lee (2000) How Sexually Dimorphic Are We? Review and Synthesis, American Journal of Human Biology 12: 151-66.
9. Boyle, M.E., S. Smith and L.-M. Liao (2005) Adult Genital Surgery for Intersex: A Solution to What Problem?, Journal of Health Psychology 10: 573-84.
10. Dreger, A.D. (1998) Hermaphrodites and the Medical Invention of Sex. London: Harvard University Press.
11. Ekdal, L., E. Kjellberg, B. Wijma and C. Berter (2005) Qualitative Analysis of Psychosocial Status of Women with Vaginal Agenesis. Fördjupningsarbete Department of Health and Environment, Division of Obstetrics and Gynaecology, Linköping University.
12. Feder, E.K. (2006) In their Best Interests: Parents' Experience of Atypical Genitalia, pp. 189-210 in E. Parens (ed.) Surgically Shaping Children: Technology, Ethics and the Pursuit of Normalcy. Baltimore: Johns Hopkins University Press.
13. Feder, E.K. (2009) 'Normalizing Medicine: Between Intersexuals and Individuals with Disorders of Sex Development', Health Care Analysis 17(2): 134-43.
14. Gough, B., N. Weyman, J. Alderson, G. Butler and M. Stoner (2008) They Did Not Have a Word: The Parental Quest to Locate a True Sex for their Intersex Children, Psychology and Health 23(4): 493-507.
15. Helström, L. (2004) Vulvakirurgi: riskfyllt ingrepp där psykosexuella aspekter måste beaktas, Läkartidningen 101(37): 2815-17.
16. Hester, J.D. (2004) Intersex(es) and Informed Consent: How Physicians' Rhetoric Constrains Choice, Theoretical Medicine 25: 21-49.
17. Hirseland, H. (2003) 'Den lämpligaste könstillhörigheten. En analys av den Svenska medicinska diskursen om barn med atypiska kön, med särskild focus på diskursens begripliggörande av kroppar som inte passer in i en heterosexuell matris', Unpublished Master's thesis, University of Stockholm.
18. Holt, R.E. and P. Slade (2003) 'Living with an Incomplete Vagina and Womb: An Interpretative Phenomenological Analysis of the Experience of Vaginal Agenesis', Psychology, Health and Medicine 8(1): 19-33.
19. Husserl, E. ([1915] 1989) Ideas Pertaining to a Pure Phenomenology and to a Phenomenological Philosophy. Dordrecht and Boston: Kluwer Academic Publishers.
20. Johnsdotter, S. and B. Essén (2004) Analys av lagstiftningen rörande ingrepp i kvinnliga genitalier. Estetiska och sexuella motiv godtas - men inte religiöst traditionella, Läkartidningen 101(37): 2810-12.
21. Jürgensen, M., E. Hampel, O. Hiort and U. Thyen (2006) Any Decision is Better than None: Decision-making about Sex of Rearing for Siblings with 17 β-Hydroxysteroid-dehydrogenase-3 Deficiency, Archives of Sexual Behavior 35(3): 359-71.
22. Kessler, S.J. ([1990] 2002) Lessons from the Intersexed. New Brunswick, NJ and London: Rutgers University Press.
23. Kipnis, K. and M. Diamond (1999) Pediatric Ethics and the Surgical Assessment of Sex, pp. 173-93 in A. D. Dreger (ed.) Intersex in the Age of Ethics. Hagerstown: University Publishing Group.
24. Kruks, S. (2006) Merleau-Ponty and the Problem of Difference in Feminism, pp. 25-48 in D. Olkowski and G. Weiss (eds) Feminist Interpretations of Maurice Merleau-Ponty. University Park, PA: Pennsylvania State University Press.
25. Leder, D. (1990) The Absent Body. Chicago and London: University of Chicago Press.
26. Lee, A.P., C.P. Houk, S.F. Ahmed and I.A. Hughes (2006) Consensus Statement on Management of Intersex Disorders: In Collaboration with the Participants in the International Consensus Conference on Intersex Organized by the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology, American Academy of Pediatrics 118: e488-e500.
27. Linde, Å. (2006) 'Få vill vänta med operation', Svenska Dagbladet Idagsidan 5 juni.
28. Malmqvist, E. and K. Zeiler (2009) Cultural Norms, the Phenomenology of Incorporation, and the Experience of Having a Child Born with Ambiguous Sex, accepted in Social Theory and Practice.
29. Merleau-Ponty, M. ([1945] 2006) Phenomenology of Perception. London and New York: Routledge.
30. Merleau.-Ponty, M. (1964) Sense and Non-Sense. Evanston, IL: Northwestern University Press.
31. Morland, I. (2005) The Glans Opens Like a Book: Writing and Reading the Intersexed Body, Continuum 19(3): 235-48.
32. Nordenström, A., A. Nordenskjöld, L. Frisén, A. Wedell and M. Ritzén (2008) Pojke eller flicka - Gissa aldrig! Diagnostik och behandling av tillstånd med avvikande könsutveckling, Läkartidningen 105(9): 629-33.
33. Preves, S.E. (2000) Negotiating the Constraints of Gender Binarism: Intersexuals' Challenge to Gender Categorization, Current Sociology 48: 27-50.
34. Rebelo, E., C. Szabo and G. Pitcher (2008) Gender Assignment Surgery on Children with Disorders of Sex Development: A Case Report and Discussion from South Africa, Journal of Child Health Care 12(1): 49-59.
35. Ritzén, M. and K. Hagenfeldt (2003) Adrenogenitalt syndrome hos barn och ungdomar - nya riktlinjer för terapi. Internationell konsensuskonferens betonar vehovet av teamarbete, Läkartidningen 100(18): 1626-9.
36. Sanders, C., B. Carter and L. Goodacre (2008) Parents' Narratives about their Experiences of their Child's Reconstructive Genital Surgeries for Ambiguous Genitalia, Journal of Clinical Nursing 17(23): 3187-95.
37. Sandström, L. (2004) Ett litet, litet snitt kan göra underverk, Läkartidningen 101(39): 2999-3000.
38. Sax, L. (2002) How Common is Intersex? A Response to Anne Fausto-Sterling, Journal of Sex Research 39: 174-8.
39. Slijper, F.M.E., P.G. Frets, A.L.M. Boehmer, S.L.S. Drop and M.F. Niermeijer (2000) Androgen Insensitivity Syndrome (AIS): Emotional Reactions of Parents and Adult Patients to the Clinical Diagnosis of AIS and its Confirmation by Androgen Receptor Gene Mutation Analysis, Hormone Research 53: 9-15.
40. Stawarska, B. (2006) From the Body Proper to Flesh: Merleau-Ponty on Intersubjectivity, pp. 91-106 in D. Olkowski and G Weiss (eds) Feminist Interpretations of Maurice Merleau-Ponty. University Park, PA: Pennsylvania State University Press.
41. Sua'ali'i, T. (2001) Samoans and Gender: Some Reflections on Male, Female and Fa'afafine Gender Identities, pp. 160-80 in T. O Te Moana Nui (ed.) The Evolving Identities of Pacific Peoples in Aotearoa/New Zealand. Palmerston North, New Zealand: Dunmore Press.
42. Thomas, D.F.M. (2004) Gender Assignment: Background and Current Controversies, British Journal of Urology International 93(Supplement 3): 47-50.