Why I’m an activist: when the cost of survival is forced, unnecessary, traumatizing medical treatment

Photo credit: Christos Tsoumplekas, Flickr

This started as a quick reflection on a professional + community conference I attended this past week and an activist-followup-mini-conference. But then it quickly grew into a rant about why I’m even in activism, mostly for my own emotional cleansing :p And then I realised that this is a good opportunity to share with the people in my life who know me from the days when I didn’t (allow myself to) understand my own gender reality. My life back then was vastly different from the one I have now. If I had to distil it down – I am now much more present in myself and in the world around me, and it’s been wild :p And I finally feel strong enough to share that in words. (Normally, I do it through making crazy detailed work plans, attempting to put them all into action with my amazing team and other awesome peeps, and generally trying to connect everyone I know into an indestructible network of love and support. And crying a lot. And baking maniacally.)

For my friends who might not know about EPATH, it is the European branch of the World Professional Association for Transgender Health, and FreePATHH is a free, community-led followup to it, with an extra “H” at the end to underline the importance of human rights in health care.

The EPATH conference has been a bit of a rollercoaster for me, and I don’t think I’m alone in that. It’s been challenging because it showcased a lot of damaging attitudes that we face in dealing with the health care system, and practices which violate basic human rights and which belong in cautionary tales from medical history rather than in its present practice. From outdated medical knowledge, to forced sterilisation and other non-consensual procedures done to people who cannot give consent (infants, young kids, people under general anesthesia), to public (as in open to the general public) showing of nude trans people – from everything I’ve heard, I highly doubt that people whose images were shown gave consent for that.

However, it was inspiring to see that so many people who were present voiced that this was not OK – from my local and international trans and inter community, the board of EPATH, to allies from all walks of life. They presented a better path (pun intended :p), one leading to preservation of human rights and dignity, and one based in science.

On April 6 this year, the European Court of Human Rights ruled that no one should be forced to undergo sterilisation in order to have their gender legally recognised – because to a lot of people it is perfectly clear that forced sterilisation is a cruel and unusual punishment for not fitting into cultural norms of sex and gender. At the same time, I see my community members being forced to undergo sterilizing treatments to have their gender legally recognized, and being subjected to other non-consensual medical procedures. The way things are set up right now, many of us are forced to choose between having access to work, education, general health care…. and protecting our bodies from forced, medically unnecessary, traumatizing treatments.

While these horrors happen to trans people seeking trans-related health and/or legal gender recognition when we are teens or adults, they happen to many intersex people when they are infants and children. In our region, they are still subjected to forced genital mutilation and non-consensual medical treatments, under the guise of “necessity” – but to be absolutely clear, in the majority of “cases” it is not health/medical necessity, but a cultural and cis- and heteronormative Western-centric sort of “necessity.” While trans people regularly have to deal with their identities being denied, erased and trivialized, intersex people are often not even allowed to know their own medical history, having to deal with the often serious health consequences, and due to stigma are rarely given the space and respect to share their experiences and needs.

I am not ok with any of this. Deeply, painfully, screamingly, bleedingly not ok with any of it. Sometimes I feel utterly helpless when faced with the medical and bureaucratic machines that attempt to grind us into conforming to their personal views of what we should be like. Because sure as hell, they have neither the science nor international human rights on their side.

I can’t speak for others in Croatia, but my own experience with trans-related health care here was very positive. I was informed about different options and the related risks and benefits. I was treated with respect and my decision about my preferred procedure was respected. I received good post-op care, and despite my terrible immune system, had zero complications. I went into the surgery room feeling that I am in good hands, and that proved to be true. The only negative experience I had (it was pretty icky…) was with an inappropriately curious doctor who was not directly involved in my care.

Further, I was clearly informed about the cost of the surgery, how much my insurance would cover, and given an extremely detailed breakdown of the costs. In contrast, people receiving care in other places often speak of being told after the surgery that they need to pay extra money, even though that was not mentioned before, let alone agreed to. They receive generic, vague descriptions of costs.

Respect, quality care, sufficient information, and cost transparency should not be seen as special treatment – this should be the norm. Universal human rights aren’t a matter of personal opinion or culture – they are a matter of universal human reality, of preventing the *preventable* issues that cause suffering to human beings.

That is why I am an activist. The price for me has been depression, debilitating anxiety, inability to close myself to the suffering of others while always feeling that I cannot help enough. But none of that outweighs the love, strength, inspiration and beauty of standing together with others and fighting to make things better.

Autorstvo: Ryan Žujo

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