Thinking outside the box

Morgan Carpenter by Del LaGrace Volcano

Morgan Carpenter; part of “Visibly Intersex” an ongoing collaborative project initiated and photographed by Del LaGrace Volcano.

Twenty years ago, Morgan Holmes, Max Beck and friends demonstrated as “Hermaphrodites with Attitude” outside an American Academy of Pediatrics conference in Boston, and I had no idea. It wasn’t the start of intersex activism, but it was the first public demonstration that intersex people existed, and it’s the event now marked by Intersex Awareness Day.

It’s something of a truism that the work of all intersex advocates is deeply influenced by our own personal lived experience. In my case, I was formally diagnosed late. The first thing that happened was that I went onto testosterone. Then, a year later, I had the first “normalising” surgery. I ended up having four surgeries within four months. Even before the fourth surgery, I had a first-time formal diagnosis of depression. Life had become very difficult.

I wasn’t told I was intersex until a therapist that I later saw gave me the word, but it was the initial diagnosis that turned my life upside down. It was only when I found Betsy Driver’s online support group Bodies Like Ours, some years later, that I found other people with similar life experiences. Even today I still regularly meet adults whose lives have been turned upside down as adults, as well as those impacted medically since birth or childhood. People whose identities and relationships are deeply challenged.

We need to be able to find each other. We need that connection with others to help overcome stigma, and to help us make properly informed decisions about our bodies. Clinical concepts of autonomy and consent are meaningless without those connections and inter-relationships.

Many of the most serious and harmful issues affect infants, children and adolescents. Ten years ago a group of clinicians with token participation by two intersex people (one an observer) published a “consensus statement”, reframing intersex as “disorders of sex development” or “DSDs” and laying out paediatric guidelines. The statement is sometimes argued as a call against early surgeries, but it contains within it rationales for early interventions to minimize parental distress and mitigate against “risks of stigmatization and gender-identity confusion”. It was followed up by a similarly conflicted “global DSD” statement earlier this year. In practice, intersex traits have since become increasingly medicalised, and the two clinical statements support any action that a clinical team wishes to take.

At the same time as the 2006 clinical statement, intersex human rights activism had begun in Latin America and elsewhere, and the persistent work of Mauro Cabral Grinspan meant that intersex is at least mentioned in the Yogyakarta Principles, on the application of international human rights law to sexual orientation and gender identity. The crucial text is not the mention of intersex in the preamble, but Principle 18B, calling for “measures to ensure that no child’s body is irreversibly altered by medical procedures in an attempt to impose a gender identity”. This speaks directly to claims made in the clinical “consensus” document.

The intersex movement of the last decade took many years to recover from the fractures, tokenism and strategic differences created by the 2006 clinical statement; between patient advocates who initially hoped that constructive engagement with clinicians would change their practices, and human rights advocates who opposed the reasserted medicalisation of intersex bodies.

Today we have a global and decentralised intersex human rights movement that shares simple core goals: the rights to bodily autonomy and self-determination, and an end to stigmatisation.

Intersex human rights activism has led to seen statements by the UN Special Rapporteur on Torture, countries around the world have been the subject of recommendations ending harmful practices on intersex children made by UN Treaty Bodies. National ethics institutions have made statements; parliaments and international human rights institutions have made statements. Many of us have agreed a common language around “sex characteristics”. Malta has enacted protections from harmful practices; Chile has suspended them. But elsewhere clinical practices have yet to change. Many barriers remain.

Some of the most fundamental barriers reflect the limited public understanding of intersex, others reflect complacency, or deliberate delaying tactics, and some are reinforced by lack of resources and concerns about self-disclosure.

The first, and most significant of these, is the lack of change to clinical practices. Published responses to human rights statements include outright denial that medical interventions constitute harmful practices. We’ve even seen claims that medical interventions on intersex children no longer take place. That practices have changed. That unsubstantiated changes to practices matter. We hear that parents demand surgeries; that the choice is between surgery or the foster care system. We also hear that parents don’t know their child is visibly different until they are told. We hear that children with DSDs are not intersex. That they don’t identify as intersex. That intersex advocates don’t represent the interests of intersex children.

Morgan Carpenter, by Del LaGrace Volcano

Morgan Carpenter; part of “Visibly Intersex” an ongoing collaborative project initiated and photographed by Del LaGrace Volcano.

In my region, an Australasian clinician organisation still recommends early childhood surgeries to modify genital appearance, despite “particular concern” about post-surgical “sexual function and sensation”.

Such clinical practices lack evidence. Claims of clinical consensus are belied by recognition that there is no clinical consensus about conduct, timing, indications, procedure or need for medical interventions. An independent study of Australians born with atypical sex characteristics published this year found “strong evidence suggesting a pattern of institutionalised shaming and coercive treatment”. In practice, paediatric clinicians simply externalise the negative consequences of treatments to adult services, with no follow-up.

Australia began to include intersex in actions and programs in LGBTI early, in 2012 and 2013, accompanied by federal protection from discrimination and a parliamentary inquiry into the involuntary and coerced sterilisation of people with disabilities and intersex people. The anti-discrimination legislation is groundbreaking, but the few institutions that have responded to it have typically focused on the same issues of honorifics and pronouns that they address in responding to discrimination based on gender identity. The parliamentary inquiry called for concrete changes to clinical practices. It had some particularly fine words on the flawed distinctions between “therapeutic” and “non-therapeutic” interventions, on rationales based on cancer risks and rationales based on stigma, but it has not been implemented. It feels like there has been little deliberate attention to the implications of intersex inclusion, and even complacency. We still have to explain the basics about what it means to be intersex. We have to devote too much time to tackling misconceptions, policy disjunctions and now pinkwashing.

One Australian state proclaims the valuing and celebration of intersex inclusion and respect for diversity, at the same time that the same government describes how the birth of infants with ambiguous genitalia is a source of great distress, and how they are routinely mutilated. Rationales include improving (heterosexual) marriage prospects.[1] A long discredited ‘optimal gender policy’ instituted by John Money is still reflected in a policy proposing the strictly-gendered naming of infants and children with ambiguous genitalia; as otherwise, “staff are implying an ongoing sense of ‘ambiguity’”.

In another Australian jurisdiction, the same senior politician wrote to me twice in 2014, in response to a 2013 Senate inquiry into involuntary or coerced sterilisation, and on local legislative proposals on birth registrations. The first time she defended surgical and other medical interventions on infants with DSDs, in line with international clinical “consensus” statements. The second time she defended a new third sex marker for infants and children, to “reduce the risk” of gender assignment surgery at the request of parents. The two policy frameworks, outlined in two letters, were entirely ignorant of each other, but both signed by the same minister.

Pinkwashing also happens through a reduction of all LGBT and intersex issues to matters of sexual orientation and gender identity. Some Australian LGBTI organisations are so unaware of the reality of intersex that they even take funding from IVF services that eliminate intersex traits prenatally, ending the possibility of intersex lives. Body shaming is also a thing. And intersex people and organisations are often called upon by LGBT groups and the media to perform just one role: that of non-binary identified persons seeking gender recognition.

Clearly many people have gender identities that need recognition, and Australian demographic information shows that maybe one in five people born with atypical sex characteristics might choose new or non-binary sex markers. But most laws and many languages don’t distinguish between sex and gender; sex has been replaced by gender in English-speaking discourse; and new classifications should not come at the cost of misgendering other intersex people. We’re far too diverse to be labelled by a single box. Instead, we need to find ways of talking about bodies.

Politically, the lessons from early intersex inclusion in Australia have taught me that it’s necessary to be wary of work that directly associates intersex bodies with proposed new sex classifications. Just as we need to challenge narrow ideas that real men stand to pee, or women must menstruate, I believe that we need to challenge any association between new sex classifications and specific kinds of bodies.

New sex classifications do not resolve concerns with medical sex assignment in infancy, they simply inscribe lines in different places. For infants with intersex traits they are just as arbitrary as existing classifications. They may be unrelated to future gender identity, and they obligate disclosure. They may exacerbate parental distress in contexts where parental distress already instigates irreversible surgical and hormonal treatments.

The better, more universal, goal is to end medical and legal assignment of sex; to seek the removal of sex or gender markers, like racial and religious markers, from official identity documents.

In thinking through how to tackle these issues, it’s useful to consider what intersex people share in common. While we don’t share the same language about our bodies, about sex or gender, we do share in common an experience of being born with sex characteristics that don’t meet medical or social norms for female or male bodies: an experience of medicalisation and stigmatisation. We don’t share a common identity. Intersex as identity is, in any case, polymorphic: it takes many different forms, but maybe it always asserts the dignity of stigmatised embodiments.

What really matters is that we are able to make connections with our peers, and that we can dismantle the systems that cause shame and stigma. We share much in common with LGBT communities; we are more likely to be same sex attracted or transgender than non-intersex people, but our distinct issues need specific attention. LGBTI has to work for all constituent populations. We also have much in common with people with disabilities, and with the children’s rights movement.

Finally, we have more issues to deal with, and we have to become more internationalist. As we collect more of our own research data on intersex lives, including through a new Australian study of 272 people born with atypical sex characteristics, we have increasing evidence of the impacts of poverty, discrimination, shame and stigma on intersex lives, and problems with access to education and healthcare.

Demographic data from Australia, and reports from Mexico, Uganda, South Africa and Nepal show high rates of poverty, and limited access to healthcare, peer support, employment and education. Public awareness and information access remain scarce. Adults and children alike experience discrimination on the basis of physical appearance, negative impacts from medical interventions during puberty, and the socio-economic circumstances of our communities. Access to healthcare is difficult not just for adults in high income countries like Australia, where early experiences with medicine can make access to healthcare simultaneously a lifelong necessity, stigmatising and traumatic. Stigma and poverty affect access to healthcare throughout life in many countries and regions.

Too many people in Australia and elsewhere still have no possibility of connection with their peers. Both public and policymakers still have very little awareness of intersex lives. The Astraea Foundation’s intersex human rights fund makes an important difference but, with only US$200,000 available globally this year, our organisations still lack the resources to create true social change. Intersex-led initiatives and intersex funds need to be supported and extended.

It is necessary for us to challenge both rhetoric of changed clinical practices, and inconsequential rhetoric of inclusion. Bodily autonomy, stigmatisation and discrimination are human rights issues. Access to affirmative medical care and peer support are also human rights issues. Intersex-led advocacy and peer support groups must be at the heart of efforts to manage and resolve these issues.

– by Morgan Carpenter, founder of the Intersex Day project and co-chair of OII Australia.

This article explores some of the same issues contained in a peer-reviewed 2016 paper by Morgan Carpenter entitled “The human rights of intersex people: addressing harmful practices and rhetoric of change” in the journal Reproductive Health Matters.

[1] Addendum: during 2016, phrasing about improving marriage prospects disappeared from the Victorian government guidelines on the the treatment of intersex children and adolescents, possibly in response to criticism by human rights advocates. The rationale read “risk of social or cultural disadvantage to the child, for example, reduced opportunities for marriage or intimate relationships, or reduced opportunity for meaningful employment and capacity to earn an income” on page 19. The current version is available via the Department and the original version is available via the Senate of Australia website and in a 2013 report on the Involuntary or coerced sterilisation of intersex people in Australia; both versions share the same date, February 2013.