Hi, I’m Morgan Carpenter. I’m an intersex man and I’m a co-executive director of Intersex Human Rights Australia, a charity in Australia that promotes the health and human rights of people with innate variations of sex characteristics. I’m speaking to you from un-ceded Bundjalung country in Australia. I’m a bioethics graduate at the University of Sydney, and, I’m particularly proud to say here today, I’m an alumnus of Dublin City University, the host for this wonderful intersex studies event.
Now, I’m speaking at the start of this event, and this provides an opportunity to do a little scene setting.
Firstly, I’d like to acknowledge that we are in a pandemic that is unprecedented in our lifetimes. In different ways, we’ve all been impacted. Many of us have lost someone; our health may have been impacted, or our workplaces and ability to travel have been affected. Perhaps the only positive is the way that online events have become a new norm.
I’m so glad to be back here “virtually” at DCU, giving a keynote to this conference, which has so ably been remade and opened up to more people, now that all of us are unable to travel to the university campus.
For some of you, this conference might be your first intersex studies event. you might benefit from understanding that intersex people have innate variations of sex characteristics that don’t fit medical or social norms for female or male bodies, and from recognising that there are many different kinds of intersex bodies, and – as is true for all marginalised populations – intersex people use many different terms to describe ourselves and our bodies, often responding to our educations, or to misconceptions or stigma.
For others, you might be navigating familiar territory. you might have participated in events in Surrey, Bologna, or Lincoln, or you might participate in any of a number of intersex studies discussion lists in English, French, German and other languages.
These events represent a growth in interest in studying intersex populations. In turn, that is driven by the increasing size of the intersex movement. It is a growing movement, with individuals are becoming visible all around the world. It is organised, with community declarations, and it has some successes, in some places, and hopefully these will grow over coming months and years.
As intersex people, we are aiming to make our voices visible, in a context where we have for so long been silenced.
I don’t mean the visibility of purple lit buildings, as we saw around Ireland last Intersex Awareness Day, though that was a welcome form of visibility that helped to start conversations where none had before taken place. I mean the silencing of medical protocols that have advised against disclosure, and the silencing of societal ignorance and misconceptions.
Intersex studies plays a key role in addressing those silences, and with that role comes responsibility, and I would like to take this time to talk about this.
In many places, medical protocols that advised non-disclosure have been replaced by new models of practice that still educate parents to understand their children as disordered, with cosmetic differences that are fixable through elective surgery. Those practices might also try to open up space between clinical and social paradigms, deliberately using medicalised language, and even reinforcing negative connotations of alternative conceptions of what it means to be intersex.
Parents might be put in contact with parents who have also consented to treatment, or who do not question treatment; they are less likely to be given affirmative language to connect them with an intersex community, with adults who have undergone similar interventions in the past. This silencing helps to sustain existing practices and promote compliance.
There is the silencing of data on the numbers of genital surgeries, feminising or masculinising surgeries, the numbers of gonadectomies, and the prevalence of hormonal treatments. If it exists, information on numbers may be disassociated from information on rationales for treatment.
This silencing creates a kind of plausible deniability, supporting claims like “surely these things don’t happen today”. They allow for the use of carefully worded claims that perform like a dog whistle to policymakers: the claim there “has been a trend towards to consideration of less genital and gonadal surgery”. A trend towards consideration? There are claims of delay, but until when, age 2? 5? or until someone can personally consent? And there are claims of change from “the past”, but when was that past? was it a decade ago? or last year? or last week? these claims are unproven, they seek to provide a good news story, and eliminate further investigation. They help to minimise accountability.
At the same time that the currency of historical practices is denied or minimised, we see other claims: the trope that surgical techniques have improved, so that outcomes are better, a claim that also makes adult subjects, irrespective of age, the recipients of ‘obsolete’ practices. This claim fails to address the far more substantive issue of whether or not that surgery was medically necessary, and what medical necessity might mean.
We see clinicians studying their own patients, studies that are subject to ascertainment bias – using language that will only appeal to a subset of their patients, and anyway lacking the ability to reach individuals who have suffered non-disclosure of their medical histories.
At the same that clinicians claim that medical practices have changed, we can see them seek to justify early elective surgery for reasons of appearance, or an idea of normality that is grounded in gender stereotypes.
It is not clear to me why someone would need to inquire about the acceptability of early elective surgery before the subject can consent? If it is elective, it is simply not necessary before an individual can consent to their own treatment.
If we know that a proportion of individuals subjected to early elective surgeries will accept it, and a proportion will not, then what does that mean? We know that many women will comply with sexist norms in workplaces, and that this does not legitimate those norms. We know that some women who have experienced female genital mutilation will seek it for their children, and they might even ostracise those who refuse it but that does not legitimate that norm
Is there any proportion who refuse or who accept surgery that becomes reasonable for us to choose to accept a practice that violates their human rights? When we have no way of identifying beforehand those that might have wanted surgery from those that don’t, why is any early elective surgery reasonable?
What does it mean when clinicians place the burden of proof about the harms caused by unnecessary early elective surgeries on those calling for them to stop, rather than those calling for them to continue?
These forms of silencing are barriers to reform, but what other concerns might we have if we were not preoccupied by these forms of silencing?
- we might be concerned with the rapid implementation of non-surgical pathways that have been a longstanding demand.
- we might be investing in psychosocial support for parents, families and children.
- we might wish to develop mechanisms to reach out to people who have suffered non-disclosure, who avoid healthcare.
- we might be concerned about the early evidence that exists of poverty, of interrupted educations, and the impact of social stigma on participation in society.
- we might consider the impact of ageing on people who have suffered a lifetime of marginalisation or compartmentalisation.
- We might be directing resources towards educating new parents and prospective parents, who are increasingly facing prenatal diagnosis.
How can intersex studies contribute to an improvement in the health and welfare of intersex people, an improvement that respects human rights, and includes those in contact with the medical system and those who have left it?
There are other forms of silencing that need to be investigated, and hopefully never exacerbated, in intersex studies, including a silencing of testimonies that arises from social misconceptions, in particular ideas about what it means to be intersex that fail to recognise the diversity of the population. And those ideas adversely impact participation in research and in community groups.
We know that intersex people have a diverse range of sex markers and identities, but some research has assumed that to be intersex is to be assigned intersex at birth, or that to be intersex is to tick a box for a third sex or gender on a form. These silence engagement in not only in that research but in future surveys and studies.
I know that some people seek a perceived right to self determination as intersex in law, but this is not well considered. Like proponents of early elective surgeries, who fail to recognise the rights of people who do not want that treatment, this silences other people with the same biological characteristics but a preference for a different legal status, and lifelong or chosen identities in line with those legal statuses.
Less obviously confronting but no less problematic, some research has been predicated on ideas of ‘coming out’ to parents, or an assumption that the needs and concerns of LGBT people are the needs and concerns of intersex people.
Some research has failed to properly examine who is included in their research and why. In Australia, some organisations added an ‘I’ to LGBTI ten or even twenty years ago – often without understanding the population and certainly without representation – and we now are seeing many of them articulate a false dilemma between tokenism or exclusion.
These too create problems of ascertainment bias and confirmation bias, and they can reify and reproduce misinterpretations of the population.
Other organisations are investing time and effort into the development of statistical methods that try to reach people with different preferences for nomenclature, and that seek to reach cisgender heterosexual women and men with intersex variations. I’d like to commend work in Australia on a new national statistical standard by the Australian Bureau of Statistics.
We also need to address a silencing of testimonies, and critical analysis, that is produced in languages that are marginalised by the dominance of discourse in English.
Intersex studies is a new and interdisciplinary field. In your work at the conference here and beyond it, I hope you will give thoughtful care and attention to fundamental rights issues:
- to bodily integrity, and bodily autonomy
- to a need to respect for the diversity of the population
- and respect for the principle of self determination, where this coexists with respect for the self determination of others.
These come with challenges, in a field where intersex people have for so long been subjects, lacking agency. Medical and social marginalisation of intersex people exacerbate marginalisation in academic spaces.
Community development and community organising are perhaps the most powerful ways to address these challenges.
Within the field of intersex studies, collaboration with intersex academics and organisations is essential in order to avoid replicating the same problems of power and paternalism that we see in other sectors – intersex people need to be co-authors, from research design to final publication – defining research goals and receiving credit for expertise.
In this regard, I want to acknowledge the very welcome participation of DCU in the INIA research network, a European network that aims to produce ten new doctors of philosophy, most of whom have lived experience.
I’d ask you to consider the contributions to this conference in the light of these issues, to ask how researchers have engaged with the subject population, how they collaborate with intersex people on research goals and design, and on methods, how they construct meaning, and how their methods influence their results.
I wish you a fruitful event and thank you very much for your time and attention.