Psychology of Sexualities Review, Vol. 1 2, No. 1, Summer 202 1 5Title
Article
What mental health supports do people with intersex variations want, and when? Person-centred trauma-informed life-
cycle care
Caroline Sanders, Megan Usipuik, Leigh Crawford, Erica Koopmans, Nicole Todd & Tiffany Jones Several large-scale surveys around the world show the most frequently reported mental health diagnoses among people with intersex variations include depression, anxiety and PTSD. Wellbeing risks are also high, with individuals with intersex variations citing suicidal thoughts or attempts across their life-course – specifically on the basis of issues related to having congenital sex variations. The population mostly attributed their wellbeing risks to negative social responses from others, difficulties around having undergone interventions, or issues around gender/identity. In the Canadian context, there is a lack of formalised, charitable Canadian wide intersex networks, advocacy groups, universal mental health care approaches, or provincial signposting to services similar to those developed elsewhere. Using a life-cycle lens, a group of international researchers came together in this collaborative Canadian study to explore health care transitions that people with intersex variations might need or desire, at various stages of their life. A key finding from this ongoing study is that transition phases have the capacity to be especially difficult in the context of mental health, such that integrating person-centred and trauma-informed approaches into care with this population is both wanted and needed. This paper specifically takes a case study approach which analyses data from two participants who identified three major themes regarding mental health impacts: ‘worth, mastery, and adequacy’, ‘isolation and inferiority’, and ‘identity and integrity’. The fourth and final theme drew on integrated medicine to celebrate emerging ‘resilience and generativity’; a positive experience that had emancipatory benefits across the lifespan. Keywords : experiences; intersex; life-cycle; mental health; support; transitions.
AT LEAST 1.7 per cent of people have intersex variations that may be physically apparent preceding or at birth, or discovered later in life through testing (Carroll, 2005; Fausto-Sterling, 1993; Intersex Human Rights Australia (IHRA), 2012). Given that sex development is complex and some elements of sex are not apparent without testing and many people never test for them, current estimates of the incidence and types of intersex varia -
tions may be conservative. Intersex varia -
tions are atypical sex characteristics (IHRA, 2012) including: chromosomes, hormones and anatomy. Many individuals with intersex variations have two or more variations (Jones et al., 2016). In the last decade people with intersex variations have been increasingly studied or referred to as part of an umbrella group within critical research (Holmes, 2009; Pagonis, 2016). Diversity in epistemology and associated research methodology has been reported (Jones, 2018), which influences a range of disciplines and domains. Further -
more, person-centred and lifespan theories 6 Psychology of Sexualities Review, Vol. 1 2, No. 1, Summer 202 1Author nameCaroline Sanders, Megan Usipuik, Leigh Crawford, Erica Koopmans, Nicole Todd & Tiffany Jones
from social sciences, encompassing holistic, inclusive and respectful trauma-informed theories, research, and practice, have become more visible in applied health sciences. For example, the emergence and establishment of patient-oriented research (POR) support units across Canada advocates for a partnered approach to developing research questions. Therefore, identifying and working with indi -
viduals with intersex is a purposeful step to exploring wellness and establishing research partnerships to co-design future studies. This article challenges older biomedical models problematising this population, as framed within normative paradigms, and argues for more person-centred and trauma-informed approaches across the lifespan. Our focus is on examining the need to meet individuals as situated in their life worlds and contexts and working in partnerships that promote wellness, recognising that bodily autonomy is a cornerstone of mental health (Davis, 2015; Jones, 2018). There has been minimal exploration of the psychological needs and wants of people with intersex variations and a significant focus on the group in their early years (infancy and development) that drops off in adulthood and as they age (Jones, 2018). This article is a step into beginning to raise awareness of the gaps in Canadian research on the mental health needs of people with intersex variations, espe -
cially across their lifespan. We report on two early case studies from participants involved in an ongoing research study examining tran -
sitions in health care. First, this article reviews the international mental health research literature on people with intersex variations. Secondly, it details the life-cycle lens as well as person-centred and trauma-informed approaches. Thirdly, it outlines the partici -
patory and action-orientated methodology and focus group methods used to facilitate agency whereby those with intersex variations were able to discuss their mental health expe -
riences, needs and wants against a backdrop of understanding transitions in health care. This article then discusses key findings from the two early case studies, how they relate to existing theory and studies, and implications for the field. Review of current literature
Literature involving individuals with intersex variations (also referred to as disorders /
differences of sex development (DSD) and variations of sex characteristics) is found primarily in the United States (Crerand et al., 2019; Malouf et al., 2010; Sandberg et al., 2017). Recent contributions from Europe (de Vries et al., 2019; Hegarty et al., 2019; Rapp et al., 2018), the Asia-Pacific region (Dwyer et al., 2015; Henningham & Jones, 2017; Wang & Tian, 2015), Africa (Ekenze et al., 2015) and the Middle East (Danon, 2019; Gül et al., 2015) have also emerged, taking various theoretical standpoints. Often studies focus on physical health concerns and intervention. Some take a traditional medical/clinical ‘corrective’ lens, often assuming the medical need for interven -
tion (Amarillo et al., 2016; Ekenze et al., 2015; Mutlu et al., 2015), while other studies focus on intersex variations and celebrate individual voices and narratives (MacKenzie et al., 2009; Sanders et al., 2015). Increas -
ingly, critical ‘Intersex Studies’ consider intersex variation through a bioethics lens, privileging the rights of people with intersex variations to body autonomy that precludes forced unnecessary treatments (Carpenter, 2018; Jones et al., 2016). There has been some exploration into the risks of inequi -
ties across health care, education, and voca -
tional opportunities for individuals with rare conditions (Kole & Faurisson, 2010) as well as various inequalities in broader socioeconomic aspects among individuals with intersex variance, (Zeeman & Aranda, 2020). Canadian literature involving individ -
uals with intersex variations is largely linked to social justice (Holmes, 2009), LGBTIQ (Byers et al., 2019; Dysart-Gale, 2010) or medical discourse (Romao et al., 2012).
There have been many overt calls in the last decade for the inclusion of mental health support as a critical aspect of interdis -
ciplinary care when working with individuals
