Reproductive justice for children and young people with gonadal variations: Intersex, queer and crip perspectives
Keywords:
Intersex, Reproductive justice, Crip Studies, Queer Studies, gonads, gonadectomy, qualitative, variations in sex characteristics, differences in sex development, healthcareAbstract
INTRODUCTION: This article draws on understandings from reproductive justice, crip and queer theories to discuss gonadectomy for children and young people with gonadal variations. Gonadectomy is sometimes performed on people with gonadal variations without their free and informed consent. Some parents report experiencing pressure to consent to such surgery when their children are young. We understand this to be an issue of reproductive justice.
METHOD: Semi-structured interviews were conducted with parents of affected children and young people (n = 13). Thematic coding was used to identify data relating to gonads, ovaries, testes and gonadectomy. The data were analysed using discursive questions drawn from a reproductive justice framework.
ANALYSIS: Parents’ talk about gonads suggests a process of sense-making that can be emotionally challenging. Our analysis situates their talk within broader societal discourses of ablebodiedness and the sex binary. Parents explained their choices and decisions by centring various understandings. Some explained how gonadectomy made sense for maintaining binary sex and following medical advice. Others emphasised the child’s consent and bodily autonomy. Our analysis draws out how parents’ decisions navigate reproductive justice and injustice.
CONCLUSIONS: Dominant beliefs about ablebodiedness and the sex binary appear to influence and frame decision-making about the gonads of children and young people with variations in sex characteristics. A crip, queer, and reproductive justice lens allows us to expand understandings of reproductive justice for all and potentially helps to destabilise and disrupt the sex binary.
References
Ahmed, S. (2004). The cultural politics of emotion. Edinburgh University Press.
Bird, J. (2005). Outside the law: Intersex, medicine and the discourse rights. Cardozo JL & Gender, 12(1), 65–80.
Breen, C., & Roen, K. (2021). Intersex children in New Zealand are routinely undergoing unnecessary surgery – that needs to change. The Conversation https:// theconversation.com/intersex-children-in-new-zealand-are-routinely-undergoing-unnecessary-surgery-that- needs-to-change-168936
Breen, C., & Roen, K. (2023). The rights of intersex children in Aotearoa New Zealand: what surgery is being consented to, and why?. The International Journal of Children's Rights, 31(3), 533-567. https://doi.org/10.1163/15718182-31030001
Cohen, J. J. (2015). Queer crip sex and critical mattering. GLQ: A Journal of Lesbian and Gay Studies, 21(1), 153–162.
Cools, M., & Looijenga, L. (2017). Update on the pathophysiology and risk factors for the development of malignant testicular germ cell tumors in Complete Androgen Insensitivity Syndrome. Sexual Development, 11(4), 175–181. https://doi.org/https://doi. org/10.1159/000477921
Corbin, J. (2021). Strauss’s grounded theory. In J. M. Morse, B. J. Bowers, K. Charmaz, A. E. Clarke, J. Corbin,
C. J. Porr, & P. N. Stern (Eds.), Developing grounded theory the second generation revisited (2nd ed.). Routledge.
Cornwall, S. (2016). Theologies of resistance: Intersex/DSD, disability and queering the “real world”. In M. Holmes (Ed.), Critical intersex (pp. 215–243). Routledge.
Deans, R., Creighton, S. M., Liao, L.-M., & Conway, G. S. (2012). Timing of gonadectomy in adult women with complete androgen insensitivity syndrome (CAIS): Patient preferences and clinical evidence. Clinical Endocrinology, 76(6), 894–898. https://doi.org/https://doi.org/10.1111/j.1365-2265.2012.04330.x
Döhnert, U., Wünsch, L., & Hiort, O. (2017). Gonadectomy in Complete Androgen Insensitivity Syndrome: Why and when? Sexual Development, 11(4), 171–174. https://doi. org/10.1159/000478082
Duranteau, L., Rapp, M., van de Grift, T. C., Hirschberg, A. L., Nordenskjöld, A., Kohler, B., Neumann, U., Cohen-Kettenis, P., Kreukels, B., de Vries, A., Arlt, W., Wiesemann, C., Slowikowska-Hilczer, J., Thyen, U., Rapp, M., Brac de la Perriere, A., Sultan, C., Paris, F., Reisch, N., ... Szarras-Czapnik, M. (2020, 2020/11/25/). Participant-and clinician-reported long-term outcomes after surgery in individuals with complete androgen insensitivity syndrome. Journal of Pediatric and Adolescent Gynecology. https:// doi.org/https://doi.org/10.1016/j.jpag.2020.11.012
Freda, M. F., Dicé, F., Auricchio, M., Salerno, M., & Valerio, P. (2015). Suspended sorrow: The crisis in understanding the diagnosis for the mothers of children with a disorder of sex development. International Journal of Sexual Health, 27(2), 186 – 198. https://doi.org/10.108 0/19317611.2014.957793
George, M.-A. (2020). Queering reproductive justice. University of Richmond Law Review, 54(3), 671–703.
Haraway, D. (1988). Situated knowledges: The science question in feminism and the privilege of partial perspective. Feminist Studies, 14(3), 575–599.
Hughes, I. A., Houk, C., Ahmed, S. F., & Lee, P. A. (2006). Consensus statement on management of intersex disorders. Archives of Disease in Childhood, 91(7), 554–563. https://doi.org/10.1136/adc.2006.098319
Johnson, E. K., Rosoklija, I., Shurba, A., D’Oro, A., Gordon, E. J., Chen, D., Finlayson, C., & Holl, J. L. (2017). Future fertility for individuals with differences of sex development: Parent attitudes and perspectives about decision-making. Journal of Pediatric Urology, 13(4), 402–413.
Kalender, U. (2010). Subtle pressures, coercive sterilizations and denials of access: A trans-crip approach to reproducitve subjectivation. Graduate Journal of Social Science, 7(2), 76–94.
Karkazis, K. (2008). Fixing intersex: Intersex, medical authority, and lived experience. Duke University Press.
Kim, E. (2017). Curative violence: Rehabilitating disability, gender, and sexuality in modern Korea. Duke University Press.
Lampalzer, U., Briken, P., & Schweizer, K. (2021). “That decision really was mine...”. Insider perspectives on health care controversies about intersex/diverse sex development. Culture, Health & Sexuality, 23(4), 472–483.
Lane, J. (2019). Anti-heteropatriarchal reproductive justice. Women’s Studies, 48(8), 882–899.
Lee, P. A., Nordenstrom, A., Houk, C. P., Ahmed, S. F., Auchus, R., Baratz, A., Baratz Dalke, K., Liao, L.-M., Lin-Su, K., Looijenga 3rd, L.H.J., Mazur, T., Meyer- Bahlburg, H.F.L, Mouriquand, P., Quigley, C.A., Sandberg, D.E., Vilain, E., Witchel, S., & The Global DSD Update Consortium. (2016). Global disorders of sex development update since 2006: Perceptions, approach and care. Hormone Research in Paediatrics, 85(3), 158–180. https://doi.org/10.1159/000442975
Leibetseder, D. (2016). Reproductive ethics: An example of an allied dis/ability-queer-feminist justice. In B. Scherer (Ed.), Queering paradigms VI: Interventions, ethics, and glocalities (pp. 131–146). Peter Lang.
Lundberg, T., Dønåsen, I., Hegarty, P., & Roen, K. (2019). Moving intersex/DSD rights and care forward: Lay understandings of common dilemmas. Journal of Social and Political Psychology, 7(1), 354–377.
Lundberg, T., Lindström, A., Roen, K., & Hegarty, P. (2017). From knowing nothing to knowing now: Parents’ experiences of caring for their children with Congenital Adrenal Hyperplasia. Journal of Pediatric Psychology, 42(5), 520–529. https://doi.org/10.1093/jpepsy/jsw001
Martino, A. S., & Schormans, A. F. (2020). Theoretical developments: Queer theory meets crip theory. In R. Shuttleworth & L. Mona (Eds.), The Routledge handbook of disability and sexuality (pp. 53–67). Routledge.
Martinussen, M., & Wetherell, M. (2019). Affect, practice and contingency: Critical discursive psychology and Eve Kosofsky Sedgwick. Subjectivity, 12(2), 101–116. https://doi.org/10.1057/s41286-019-00071-y
McDermott, E., & Roen, K. (2016). Queer youth, suicide and self-harm: Troubled subjects, troubling norms. Palgrave Macmillan.
McGeorge, E. (2018). Surgical intervention on intersex infants: Legal issues and recommendations for New Zealand. Public Interest Law Journal of New Zealand, 5, 27–37.
McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. NYU press.
McRuer, R., & Mollow, A. (2012). Sex and disability. Duke University Press.
Morison, T. (2023). Using reproductive justice as a theoretical lens in qualitative research in psychology. Qualitative Research in Psychology, 20(1), 172–192.
Morison, T., & Mavuso, J. M.-J. J. (Eds.). (2022). Sexual and reproductive justice: From the margins to the centre. Lexington Books.
Orr, C. E. (2022). Cripping intersex. UBC Press.
Price, K. (2017). Queering reproductive justice toward a theory and praxis for building intersectional political alliances.
In M. Brettschneider, S. Burgess, & C. Keating (Eds.), LGBTQ politics: A critical reader (pp. 72–88). NYU Press.
Ramaekers, S., & Suissa, J. (2011). The claims of parenting: Reasons, responsibility and society. Springer Science & Business Media.
Rowlands, S., & Amy, J.-J. (2018). Preserving the reproductive potential of transgender and intersex
people. The European Journal of Contraception & Reproductive Health Care, 23(1), 58–63.
Rubin, D. A., Wolff, M., & Swarr, A. L. (2022). Creating intersex justice: Interview with Sean Saifa Wall and Pidgeon Pagonis of the Intersex Justice Project. Transgender Studies Quarterly, 9(2), 187–195.
Ryan, K. (2020). Refiguring childhood: Encounters with biosocial power. Manchester University Press.
Sanders, C., Carter, B., & Goodacre, L. (2008). Parents’ narratives about their experiences of their child’s reconstructive genital surgeries for ambiguous genitalia. Journal of Clinical Nursing, 17(23), 3187–3195.
Sanders, C., Carter, B., & Goodacre, L. (2011). Searching for harmony: Parents’ narratives about their child’s genital ambiguity and reconstructive genital surgeries in childhood. Journal of Advanced Nursing, 67(10), 2220– 2230. https://doi.org/10.1111/j.1365-2648.2011.05617.x
Stats NZ. (2021). 2023 Census first to collect gender and sexual identity from everyone in Aotearoa New Zealand. Stats NZ. https://www.stats.govt.nz/ news/2023-census-first-to-collect-gender-and-sexual- identity-from-everyone-in-aotearoa-new-zealand/
Steinmacher, S., Brucker, S. Y., Kölle, A., Krämer, B., Schöller, D., & Rall, K. (2021). Malignant germ cell tumors and their precursor gonadal lesions in patients with XY-DSD: A case series and review of the literature. International Journal of Environmental Research and Public Health, 18(11), Article 5648. https://doi.org/10.3390/ijerph18115648
Stritzke, N., & Scaramuzza, E. (2016). Trans*, intersex, and the question of pregnancy: Beyond repronormative reproduction. In S. Horlacher (Ed.), Transgender and Intersex: Theoretical, Practical, and Artistic Perspectives (pp. 141–163). Springer.
UN Committee on the Rights of the Child (CRC). (2016). Concluding observations on the fifth periodic report of New Zealand, CRC/C/NZL/CO/5. https://www.refworld. org/docid/587ceb574.html
Weidler, E. M., Linnaus, M. E., Baratz, A. B., Goncalves, L. F., Bailey, S., Hernandez, S. J., Gomez-Lobo, V., & van Leeuwen, K. (2019, Dec). A management protocol for gonad preservation in patients with Androgen Insensitivity Syndrome. Journal of Pediatric and Adolescent Gynecology, 32(6), 605–611. https://doi. org/10.1016/j.jpag.2019.06.005
Wetherell, M. (2012). Affect and emotion: A new social science understanding. Sage.
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