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There are three takeaways from my experience with detransition, trans health care, and vision loss that are generally missed. It is easy to make generalizations and turn it into a scare story, but context is crucial.
1. It is a rare-among-rare complication that cannot be generalized to larger groups. I have a very complex medical & family history that 99.9% of folks don’t. The chances of another person dealing with this is slim. Important to know, but for most it won’t impact them at all.
Focusing on the vision loss, as if it’s something that could happen to Random Jo, is unnecessary fear mongering. Because it probably won’t. If it could, I would have found more than like, 3 case studies in the span of several decades. And all of them had different diagnoses.
2. Trans people need more comprehensive care from all kinds of doctors. It isn’t the vision loss that is the problem. It’s the fact that there is so little research or consistency in effective, compassionate care across specialties for trans people that leads to poor health.
Not everyone will have to deal with my precise issue, but *we are all systematically neglected by the system we expect to support us*. And that becomes all the more clear when something goes wrong. What goes wrong will vary. Doctors treating trans people better helps us all.
3. Everyone - yes, even disabled people and youth - have the right to autonomy. No one did this to me. It was a result of medical decisions I made for myself interacting with the complex nature of my body. I stand by making that decision and believe others can make their own.
The flip side of neglectful care is not to swing the pendulum and become overly controlling. It’s to research and work collaboratively with people impacted so as to come up with a comprehensive treatment plan tailored to their needs. People are not numbers.
My positions have always been centered on the rights to informed consent and self-determination. I am not out to save anyone and never have been. My focus is on the system that is failing us and what we need to do to push back against it. This will not change.
So, yes. Learn from my story. But take what you read with a grain of salt. Think about what systems are at play, where the gaps are, and come to your own conclusions about your medical care. And give others the same courtesy as we try to improve things together.
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