Decolonising and demedicalising intersex research

The Psychology & Sexuality special issue “Feminisms and Decolonising Psychology” (Macleod et al., 2020) raised important questions about the role that psychology researchers can play in decolonisation. We take this further, examining the role of non-Indigenous psychology researchers, such as ourselves, in settler states such as Aotearoa / New Zealand. Macleod et al. (2020) envisage a feminist decolonising psychology involving interventions, coalitions, resistance and knowledge production. We propose an approach to knowledge production that is based on coalition between Indigenous and non-Indigenous researchers and that opens up opportunities for resistance and transformation. In this commentary, we first introduce literature on the role of Pākehā (non-Indigenous New Zealander) researchers committed to decolonisation. We then examine the possibility of bringing decolonisation into dialogue with demedicalisation. Finally, to focus our analysis on a particular issue, we consider the opportunities for decolonisation and demedicalisation in intersex research.

Research agendas in Aotearoa currently foreground Mātauranga Māori (Māori knowledges), prompting some Pākehā researchers across the social sciences to frame their research not only in terms of social justice issues broadly but in terms of decolonisation specifically. Some do this by developing antiracist initiatives (Came & Griffith, 2018; Came et al., 2017), troubling the naturalisation of settler cultures (Black & Huygens, 2016), critiquing public policies and practices that fail to uphold the treaty on which our being in Aotearoa is founded (Came et al., 2019; Came, Kidd et al., 2020), and collaborating with Māori colleagues to produce transformative research (Jones, 2017).

Decolonising feminist psychology means unsettling the colonial knowledge frameworks that dominate, both in psychology research and in feminist discourse. In Aotearoa, we suggest that decolonising feminist psychology means foregrounding Mātauranga Māori, and building respectful understandings of kaupapa Māori research, that is, research by Māori, for Māori, and following Māori principles (see Waitoki et al., 2018; Waitoki & Levy, 2016). Decolonising intersex research in Aotearoa means bringing decolonisation and demedicalisation into dialogue, and we suggest how this could mean designing research centred on Māori models of health.

The role of Pākehā researchers committed to decolonisation

Decolonisation is about refusing to legitimise the dominance of Western knowledge, and instead seeking power in [Indigenous / Māori] philosophies, truths, and stories. (Jackson, 2017 in Carlson, 2019, p. 85)

Social research in Aotearoa takes place in a context where Western researchers have “fragmented, appropriated, and objectified Māori knowledge” (Carlson, 2019, p. 78). Such persistent and ongoing misinterpretations of Māori reality by Pākehā researchers have entrenched negative images of Māori and led to suspicion of Pākehā researchers (Carlson, 2019; Mikahere-Hall, 2017). Kaupapa Māori research rejects Pākehā methodologies that have persistently misrepresented Māori and erased Māori ways of knowing and being that do not “fit” with Pākehā ideologies (Black & Huygens, 2016; Curtis, 2016; Jones, 2012; Smith, 2012). Instead, kaupapa Māori research “advances the decolonisation agenda by privileging Indigenous voices and epistemologies” (Carlson, 2019, p. 78).

Mikahere-Hall (2017) points to parallels between kaupapa Māori research and qualitative research, participatory action research, critical feminist research and research that works towards social justice. Others, however, caution against relying on these parallels, arguing that a kaupapa Māori approach more reliably decentres the coloniser. Alison Jones explains that much critical theory (using terms like colonisation and injustice) “require[s] the coloniser … to be at the centre of attention … [while kaupapa Māori] enables a positive turn instead towards the strength within Māori/Indigenous communities” (2017, p. 4). Jones describes this as a post-critical move.

Various Māori and Pākehā researchers offer useful insights into the role Pākehā researchers might play in relation to kaupapa Māori research. Pākehā researchers should ideally build relationships over years, suspending judgement, being humble, being at ease in Māori contexts and familiar with te reo Māori (Māori language) (Jones, 2012, 2017); we should be able to position ourselves as non-Indigenous (Smith, 2012) while being reflexive of our own identity and its effect in a Māori space (Black & Huygens, 2016); we should critique Pākehā / colonial constructions (Cram et al., 2006) and we should be able to work towards solutions that are consistent with Māori values (Curtis, 2016). The Pākehā researchers we draw on here position themselves in the fringes of kaupapa Māori research, thus centring Māori and facilitating Māori autonomy. Given our research investigates the possibility of weaving Indigenous methodology into intersex research, it remains our responsibility as non-Indigenous researchers to centre Māori in this dialogue.

Bringing decolonisation into dialogue with demedicalisation

Our research on the medicalisation of the (inter)sexed body prompts us to try to theorise decolonisation in tandem with demedicalisation. Critiques of medicalisation typically draw attention to the way that social issues become individualised and stigmatised through medicalisation. Critiques also highlight the disempowering and pathologising effects this can have on individuals and minoritised groups, as identified by Indigenous researchers (Sørly et al., 2019).

Feminist psychologists have critiqued the effects of medicalisation, for example raising concerns about the medicalisation of women's anger (Kruger et al., 2014), women's hormonal changes (Liebert, 2010), women's misery (Ussher, 2010) and trans youth seeking gender-affirming healthcare (Roen, 2011, 2018). The Feminism & Psychology special issue “DSM-5 and Beyond” (Marecek & Gavey, 2013) addresses criticisms of the biomedical model of mental health. The editors write that this special issue was born, in part, out of a “lack of attention to feminist concerns” (Marecek & Gavey, 2013, p. 5) in the DSM-5. They note that feminist and queer scholars have conducted research that resists the Western medical classification of disability, sexuality, sex and gender, cognitive impairment and neurodiversity. Feminist scholars beyond psychology have also written about the (de)medicalisation of issues, including women's sexual pain (Farrell & Cacchioni, 2012), intersex bodies (Kraus et al., 2008) and disabilities (Dossa, 2008), among many other topics. Some feminist psychology scholars have highlighted the problematic aspects of the medicalisation of intersex (Liao et al., 2019; Liao & Roen, 2013; Lundberg et al., 2018; Roen, 2008; Roen et al., 2018).

Opportunities for decolonisation and demedicalisation in intersex research

Although an increasing body of research addresses the topic of intersex, or variations in sex characteristics, none of this research explicitly focuses on Indigenous cultures (Roen & Lundberg, 2020). In Aotearoa this leaves Māori and Pacific parents of intersex children with “no clear point of reference with which to identify” (Steers et al., 2020, p. 3). What might Indigenous knowledges say about intersex advocacy and community building, or about the medical treatment of intersex children? How might the human rights concerns of intersex people be experienced from specifically Indigenous points of view? How might the experience of variations in sex characteristics be addressed within particular Indigenous family and community contexts? Such research questions might usefully be reworked and investigated by Indigenous researchers. This would complement existing queer Indigenous research (Driskill, 2010, 2011, 2018; Kerekere, 2017).

Here, we take initial steps towards bringing demedicalisation and decolonisation into dialogue in the context of Aotearoa / New Zealand. We do this by working with two examples of decolonising health research and one example of an Indigenous model of health. The first example comes from Fiona Cram and colleagues (2006), who discuss how health disparities have formed through the erasure of Māori tradition and the deficit-oriented framing of Māori culture by Pākehā health care systems. This has created suspicion towards health care providers and continuing poor health outcomes for Māori (Cram et al., 2019). In their research, the consulting room is “viewed as a site of struggle between Māori patients and Pākehā physicians” (Cram et al., 2006, p. 45). This is because two cultures and ideologies meet, and each is challenged by the other. The question that permeates this struggle is: whose knowledges, ideologies, truths and lived experiences are prioritised in the physician's room?

The physician's room is also a site of struggle for people with variations in sex characteristics. Western medicine has shaped the intersex body and this creates a struggle for intersex people within medical institutions. We reframe the question posed by Cram et al. (2006): whose knowledge and whose truth is being favoured in the discourses that justify the use of “normalising” interventions on intersex children (Brömdal et al., 2017)? Calls have been made for medical practitioners to carefully consider the psychosocial implications of medical interventions in relation to variations in sex characteristics (McCauley, 2017; Roen, 2015), but little progress has been made in this respect. There is an opportunity for decolonising research to respond to this issue in a transformative way. While Western/Pākehā models of health make it seem meaningful to assign (binary) sex to infants, intervening on bodies that threaten that binary, Indigenous/Māori models of health often take a more holistic approach. The implications of Indigenous models of health for intersex healthcare have yet to be explored.

Our second example comes from Teah Carlson’s (2019) work on decolonising health literacy where medical definitions of health literacy are deconstructed and reworked through a Māori evaluation framework. Health literacy is the ability to appraise and communicate information regarding health. Carlson describes “literacy” as “a tool of privilege and power in the communication and practice of the West” (2019, p. 83). She suggests that prevailing understandings of health literacy do not take into account the social and cultural factors that affect health and understanding, and she argues for decolonised health literacy through Māori evaluation.

This understanding of health literacy could be transformative for people with variations in sex characteristics. Carlson's framework aspires to “co-ownership, mutually beneficial outcomes, and sharing power by prioritising patients’ voices to develop the criteria for determining the effectiveness of the intervention” (2019, p. 86). This resonates with intersex advocates’ calls for people with variations in sex characteristics to be more involved in their own healthcare decisions, and for healthcare interventions to be assessed in relation to their experiences and understandings (Carpenter, 2018, 2020; Chase, 2000, 2002; Holmes, 2002, 2009; Jones et al., 2016; Steers et al., 2020). This could provide an avenue for healthcare interventions to be rejected for upholding a Western model of sex and gender that does not address an individual's cultural needs.

Carlson’s (2019) and Cram et al.’s (2006) research envisages a culturally safe consulting room where the health literacy of Māori patients is understood and respected through a psychosocial lens that considers the cultural and social background of the patient and whānau (family). Genuine understanding of cultural and social impacts on the health literacy of patients would allow for a more transparent understanding between the parties involved in healthcare. This understanding could provide the foundation for genuine informed medical consent, and for patients to contest the use of medical interventions they do not want.

Decolonising health research points to the need for rethinking whose frames of knowledge dominate in healthcare settings (Cram et al., 2006) and it offers an approach that centres Māori ways of knowing in health evaluation (Carlson, 2019). It also points to the importance of unlearning privileged ways of knowing (Came, Warbrick et al., 2020). One way to centre Indigenous ways of knowing is to work from a Māori model of health, such as Te Pae Māhutonga (Durie, 1999, 2004), which takes a holistic approach, focusing on health promotion. This model is used by Gender Minorities Aotearoa, ¹ a kaupapa Māori organisation for trans* and inter* people. Principles of this health framework are laid in the form of Te Pae Māhutonga (the Southern Cross), a constellation visible in the Southern sky. In this framework, each of the six stars represents a key area for promoting well-being. The four stars of the cross are the primary principles of Indigenous health promotion: Mauriora (cultural identity and access to the Māori world), Waiora (environmental protection), Toiora (healthy lifestyles) and Te Oranga (participation in society). The two stars adjacent (the pointers) represent the guiding principles of Ngā Manukura (leadership) and Te Manawhakahaere (autonomy) (Māori health models - Te pae māhutonga, 2017). ²

This framework could be used to address the demedicalising aspirations of intersex advocates and researchers. The four guiding principles can be read to advocate secure identities that are upheld by Māori understandings of the body, and specifically the intersex body; freedom from the shame and secrecy that are a risk to well-being; and equitable access to education, care and recreation. In the face of medical interventions Te Mana Whakahaere (autonomy) is a central concern for the intersex community who seek for intersex voices to be heard and bodily autonomy to be respected. Attending to this principle most clearly brings into question Western medical ways of “determining” sex (as binary). The guiding principle of Ngā Manukura (community leadership) is also important. Intersex communities are sparse, under-resourced and often connected only online, presenting community leadership challenges. Promoting this aspect of health and well-being would mean a commitment to resourcing intersex people to connect and lead initiatives by intersex people, for intersex people.

There is an opportunity in Aotearoa to undertake research weaving together the dual goals of demedicalising intersex and decolonising (intersex) research. While our current research invites people in Aotearoa to consider what kind of conversation goes on between people with variations in sex characteristics and significant others, this is only a first step. We hope that future studies will be led by Māori researchers so that Māori voices will eventually come to shape the intersex narrative in transformative ways, creating a knowledge base that promotes spiritual well-being, social support and self-determination for intersex people. This work could usefully be understood as part of a wider movement to decolonise and demedicalise Indigenous and norm-challenging bodies in various contexts.