Thursday, 21 April 2016

Cue cute guinea pig noises

Yesterday I partook in something rather interesting, namely a study by UK university law researchers on laws pertaining to intersex. One of the reasons being the complete absence of any such laws in the UK, while countries like Australia and Germany have already passed laws specifically pertaining to intersex individuals. With similar and/or different laws in the works, a study consulting actual, real-life intersex individuals would be very useful.

Personally I thought that it was great that I got consulted this way. Both because it makes me feel appreciated, but more importantly because I could possibly make an actual difference for intersex individuals. Indeed, since people like me have seen and experienced all that is wrong with society's approach to intersex, why not ask us how things should be changed?

Ultimately my recommendations came down to a complete ban on the genital mutilation of intersex children, the full right by said children to decide about their own biological sex, gender and related, and to add information about intersex to the school curriculum, starting in primary school.

I also noted during the interview that there is an almost complete disconnect between politics and the medical world when it comes to intersex, meaning that while politics can say one thing, organisations like WPATH can happily go on to refer to intersex as a disorder and recommend forced 'normalisation surgery', involving said genital mutilation. It is something which makes the outright by politicians against for example female genital mutilation in non-Western countries seem delusional, if not hypocritical.

What results of this study is hard to say at this point, but it does make me painfully aware of the long way we intersex people still have to go before we are essentially recognised as 'persons' for the law and are both safe from harm and gain the right to necessary medical treatment, at our own discretion. Newborn intersex babies, infants and children in particular.

What was also interesting in light of this study is my own current situation. Yesterday I went home feeling unwell again, with also the disconcerting symptom of my right leg having gone virtually completely numb. Today I stayed home after calling in sick, with still the same numb leg and partially numb right arm, as well as a migraine and occasional bouts of nausea.

What worries me the most about the numbness in my right side is that previously I would have it for a few days and it'd go again, but this month it first appeared as a symptom for a few days, vanished and then suddenly reappeared very strongly yesterday. This has never happened before.

Somewhat bitter in this is that last week I notified my family doctor and the endocrinologist about the numbness and other symptoms already, and I was expecting a response last Friday or Monday with their recommendations, yet no reply has been received by me just yet. It seems that I'll have to send another update and beg them to please consider my case to be increasingly more urgent.

I would really like to feel like I can trust doctors again, but when I am being told one thing and nothing happens, or I'm constantly being dismissed, it reinforces the belief that doctors are not ever to be trusted and that I am justified in my fully negative opinion of them. This is not a pleasant belief and not one I wish to maintain, if at all possible.

Meanwhile I have decided that if these extreme PMS and other symptoms are caused by endometriosis, the best thing I can do at this point is to use the anti-conception pill again, which should suppress any hormonal cycle and thus prevent the related symptoms. If this works as imagined, then it'll be virtually certain that I do indeed suffer from endometriosis, which will be both a blessing and a curse. The former because it'll mean one less battle to fight with doctors about regarding my monthly pains.

That I am still - after eleven years of doctor contact - experimenting like this with my own body and life does really bring home the point that in the end I am merely a medical guinea pig, not a human being.



Sheila Nagig said...

It almost seems to me that this should be a medical specialty and that intersex people should not be made to feel as if they're being experimented on by doctors who aren't qualified to treat them. Is there an advocacy organization for intersex people? There probably should be. Then you and the other people in your situation wouldn't have to feel isolated because you'd be able to talk to one another and recommend doctors who will treat you like human beings and not guinea pigs.

Maya Posch said...

@Sheila - While there are some self-professed intersex organisations out there, their practical impact for us intersex people is practically zero. That's why I started on setting up my own (WISH) a number of years ago. Maybe some day I'll get back to it.

For now I just do advocacy by my lonesome, doing interviews and educating people when possible. Sadly it doesn't appear that the medical world is very welcoming to the idea of treating intersex individuals as people, regressing into calling us a 'development disorder'.

Maybe some day this will change...