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Appropriate bodies and other damn lies: Intersex ageing and aged care

2015; Wiley; Volume: 34; Issue: S2 Linguagem: Inglês

10.1111/ajag.12275

1741-6612

J.R. Latham, Catherine Barrett,

Gender, Labor, and Family Dynamics

The Intersex Ageing and Aged Care Project was conducted by the Australian Research Centre in Sex, Health and Society at La Trobe University in collaboration with Organisation Intersex International Australia and funded by the Australian Department of Social Services. The project aim was to document the experiences and needs of older intersex people to inform an evidence-based guide to intersex inclusive aged care services. Ethics approval was provided by the La Trobe University Human Research Ethics Committee and two interviews were conducted. The following narrative has been adapted from one of the interviews in consultation with the interviewee. The interviewee is a person in their 60s who would like to be known as Pat. People don't understand what intersex is. It frightens them or whatever. It's something that I should expect; it's sort of something that I should get used to. I had surgery around three times, from what I could find out, between the ages of zero and about six or seven. Then I had maybe one or two lots of surgery as a teenager. And then as an adult I've had about nine or ten. Medical people, people I meet, even friends virilised me. Virilising is about masculinising because they perceive I have a deep voice, big hands, strong muscles, all that stuff. I don't think that's a problem. I don't mind it, but a lot of people around me do. It makes them think I'm a transgender person, and they like to express their prejudices about transgender to me. But I see myself as having one of a variety of natural differences. I rail against ideas of appropriate female or male bodies. I rail against the whole business about gender and maleness and femaleness. My experience of those things has been: it's a damn lie, and it's a hurtful damn lie. I don't identify as queer. My legal sex is female. I don't identify as female. I have nothing to do with gender. It's not something that's about me. Other people might like to play that game, but I'm no gender, I'm not mis-gendered, I'm not in between genders. Gender is not something that has anything to do with me whatsoever. I'm not without gender; it is just nothing to do with me, nothing at all. Every time sex and gender have been a part of my life, they have not been helpful. Many intersex people have been on hormone replacement therapy for lengthy periods of time, probably longer than anybody else. Some of us have been on hormone replacement therapy from adolescence. I have not the foggiest idea and health professionals don't have the foggiest idea what the impacts of long-term hormone replacement are. They seem singularly uninterested in finding out. I've got no idea and there's no research to help me. The attitudes of health professionals is to do all this surgery when you're a kid to fix you up and send you on your way as a fixed-up person, everything's done. But God knows how that's going to play out. There just isn't the research to inform them about what's best for me. They're sort of going on their best guess. All the stuff around intersex is around intersex and birth: ‘Do you know if it's a boy or a girl?’ and all this sort of stuff. Nobody sees, you know, how we manage as adults, how all those interventions have played out for us over a lifetime. I was subjected to some really primitive interventions that were around in the '50s, and the response of health professionals to how my life has played out is: ‘Things are much better now, we don't do that anymore’. But hang on a minute, you did it to me, and this is a real life, this is me, this is a living person, this is my whole life, and you seem completely uninterested. My mother is in an aged care facility. When I visit that aged care facility with my partner, because we're seen as same sex or queer, we never, ever leave my mum's room. Usually I visit by myself and mum will take me up to the dining room for dinner. I am extremely concerned, because most of the care is provided by religious-based organisations. So that's a real worry for me. As an ageing intersex person, if I end up in a position where I'm showered by somebody else and my body's in its naked state, a visibly different body, I think how is that going to play out? What's going to be said about me? How's that going to play out if I'm in a nursing home? Do I, you know, end up spending the last years of my life in a kind of living hell as a queer person – and I've had plenty of it, I can tell you, plenty of it over my life, as being exhibit No.1. I'm one of the few people like me that the health professionals have seen and you know it excites all this curiosity like a side show. A lifetime of that is very wearing. Health professionals they need to know not to be judgemental. If they're curious, educate themselves as much as possible without asking the client to educate them. By the time they get to the client, the client is 70 years old or something and has probably been doing it all their frickin' life. And, you know, why do I have to educate some 25-year-old about my differences again for the 10 million billionth time? Surely they can educate themselves. Surely they can have training sessions and know about me without being intrusive and asking me to be their professor once again. Health professionals need to take some responsibility for skilling themselves up rather than putting the onus back on the client to do that. Why do we have to keep telling our stories? Why do we need to tell stories so that people will listen? We shouldn't have to. Each time I retell my story I'm revisiting traumatic experiences in my life. I am increasingly less inclined to tell my story. I have activist fatigue. It wears me down. I have spent my life explaining myself. All aged care providers should be aware that intersex exists, and where the resources are, so that if they come across intersex in their client base, they can get support for their organisation, educate themselves from their organisation and take the burden off the intersex person. They can go to Organisation Intersex International's website at www.oii.org.au and educate themselves. This project was funded by the Australian Department of Social Services.