Associate Professor Tiffany Jones PhD, ARCSHS La Trobe, Australia
There is a lack of affirming sociological research on people with intersex variations – those born with atypical sex characteristics (chromosomal, hormonal and/ or anatomical). This is despite the social change the group has been experiencing and contributing to. People with intersex variations have been engaging in multiple activism efforts to combat the issues of visibility and stigma they have long faced, which is starting to be challenged in key global and Australian anti-discrimination laws and protections. Nonetheless the key theoretical frames predominantly used in research on people with intersex variations have been medical/clinical frames (endocrinology, paediatric health, genetics and others), mainly casting the group as having disorders in their sex characteristic development requiring corrective surgical and hormonal treatments. There have also been psychological studies which have looked at individuals’ abilities to integrate into gendered identities for example, or associations with criminality. Additionally, there have been a smaller number of LGBTI and Queer studies which have considered intersex people within a broader examination of the impacts of social marginalisation or sex-gender alignment tropes.
The issue with these research frames is that they can over-simplify people with intersex variations to fit concerns which may not be primary for the participants themselves, in ways that contribute to marginalising perspectives. For example, medical professionals conducting clinical studies may aim at improving their own treatment practices, so their studies (which may explore particular interventions) can look at the medical practices’ ‘success’ by institutional standards, rather than how participants experience intervention or indeed, life without intervention. Scientists conducting biological and genetic studies may aim at understanding how and why intersex variations come about, so their studies (which may involve buccal smears, cell analysis, gene mapping and so on) may for example consider a gene or a chromosomal variation and its traits and the extent of its hereditary nature, rather than what participants experience around family relations and hereditary links or their lack. Psychologists may aim at treating pathological thinking, and their studies (which may include sessions around the subject’s identity formation or family therapy as just one example) can sometimes overlook the complex social dynamics at play, or the issue of social hegemonies and how they impact mental health. LGBTI and Queer researchers may aim to understand or deconstruct dominant marginalising grand narratives, so their studies (which can include analysis of participant responses or texts, or other methods interrogating normalisation) can overlook the specific physical realities and service issues people with intersex variations can uniquely experience beyond established understandings of marginalisation. In short, whilst all these lenses have contributed much to current understandings of people with intersex variations, each overlooks components of their experience. Particularly, in overlooking how people with intersex variations experience their own worlds – including their bodies, social worlds and service experiences – researchers can overlook the groups’ most urgent concerns.
There is a need for sociologists to become more invested in the issues of this group, and see people with intersex variations first and foremost as they see themselves – as individuals with relevant opinions on their own bodies, social relations and cultural networks. There is a need for more research in the distinct area of ‘Intersex Studies’: a framework devoted entirely to intersex issues; foregrounding the goals, perspectives and experiences of people with intersex variations. This area of sociology must be inhabited by two kinds of researchers. First, intersex sociologists doing research on their own experiences and networks using their ‘insider’ perspective (Georgiann Davis is one example but the field will necessarily benefit from a range of perspectives), for whom narrative and autobiographical methods, interviews and focus groups may be particularly suited. However, it will be for intersex sociologists to really determine and set their own research agenda, helping to inform the work of the second group: non-intersex sociologists. These researchers should be doing research including people with intersex variations in their broader population studies (for comparative analyses) and considering making their own specific contributions to Intersex Studies. Such researchers will need to involve people with intersex variations more directly in their studies so that this work becomes ‘with’ and ‘for’ these individuals rather than simply ‘on’ them. I don’t pretend that people with intersex variations (or their representative groups) can offer clear and agreed ideals of what research needs to be done which will ensure that a study is necessarily above all community members’ reproach (true consensus is never achievable for any community, and there are multiple intersex communities). Nevertheless, efforts at working ‘with’ rather than wholly ‘on’ people is a step in the right direction, and people with intersex variations do have some key community documents such as the Darlington Statement which show efforts at creating consensus around key issues. To ignore such community-identified issues in research, is necessarily to pursue the goal of the researcher and not the researched. At best researchers may end up ‘talking to themselves’ in an irrelevant report nobody reads. At worst they may do serious damage to a community’s own efforts at self-construction by (however innocently) ‘talking for’ that community in an academic voice that has been historically more valued.
Another way we as sociologists can engage people with intersex variations in our work is to run a community reference group. In 2015, I worked with a range of advocates from organisations serving intersex communities to launch the ‘Australians born with Congenital Variations in Sex Characteristics (Intersex/ DSD/ hormonal, chromosomal or other biological variations/conditions)’ study. The project’s conceptualisation relied heavily from the outset on the insights and energies of people with intersex variations themselves, including community reference group members. An anonymous online survey was designed to gather basic data, combining both quantitative and qualitative questions to enable people with diverse identities and experiences to engage with the topics. Participants were recruited through a range of techniques including paid advertising and promotion in support groups and services. In total, 272 people with intersex variations participated – the largest ever number in a Southern-Hemisphere-based study. Important findings included for example issues of inter-family secrecy which hindered many individuals’ knowledge of any hereditary links for their variations, issues of terminology in medical settings both for and about individuals’ variations which appeared to impact their initial feelings towards their variation and wellbeing, inappropriate health and mental health services, and increased early school dropout.
The 2015 survey was just one sociological study offering an opportunity for people with intersex variations to discuss key issues; it certainly couldn’t cover every topic of concern, and the community reference group couldn’t possibly have featured people with ‘every single variation’ (there are over 40 that we know of, but scientific knowledge of intersex variations may be limited). Participants called for more research in the field generally, particularly on health care from their own perspective and on social themes. More sociological studies are needed, involving different reference group members with varying experiences and perspectives, taking alternative issues on the issues I was able to study, and others I did not. I am not arguing here that sociology will be a perfect frame or the only frame that holds value for this group. Rather I am trying to show that it has historically been a ‘missing’ frame for this group and researchers in our field may be able to fill these gaps. There are a whole set of socially-oriented and community-focused questions that remain unanswered for people with intersex variations that – where answered – could have been useful or even wholly transformative for the policy provisions and services made available for this group. With the social perspective missing, medical and other perspectives necessarily dominate, with problematic results. I offer this challenge to sociologists: How can your own work contribute in a useful way to greater social understanding for (and with) people with intersex variations?