Without music, life would be a mistake. Friedrich Nietzsche
I love the smell of ground coffee. It’s my Sunday luxury. I love the smell of it a lot more than I can be bothered to drink it these days. You know how some scents just take you some place else – like fresh bread, or bacon* sizzling under the grill. Some things just transcend the banalities of ordinary life. *I‘m veggie, so this is a bit of an issue, but if I hang by the kitchen window, I can sometimes catch a hint on the breeze as my Polish neighbours rustle up breakfast….
Freshly ground coffee and reading the papers in bed. Unfortunately, I have to admit to being sensitized to coffee after, ahem, how to say this, drinking the stuff to the exclusion of almost everything else during my last term at college. And that includes eating. I ran a percolator – remember them? – and poured the resulting syrup on an “as needed” basis. It was a long time ago, but my coffee glitch has remained to this day. I swear I could run up walls if I drink too much of the stuff, so Sunday mornings only it is.
I’m not what you’d call a religious person. Sundays don’t hold that significance for me. I’m not a person of faith. I’ve known some folk who are more religious about going to their philately club meetings than many who attend to their faith. Nevertheless, religion has become associated with people of faith.
My mother is strong in the faith. Baptist. We don’t talk much these days. Nothing very much to say to one another. She doesn’t accept my girlfriend for one. Nor does she think “people like me” should complain about the good work that doctors do to “help” us.
“Us” meaning intersex.
In many ways she was as ill-served by the many clinicians who swarmed around me as I was. She’s never really got over the years of intensive visits to hospital, and my increasingly obstructive behaviour toward those medics. Nowadays it’s simply easier
￼to blank it out. She thinks me deeply ungrateful. She has a point: I am. It’s difficult to imagine anyone being thankful for the nightmare I endured.
I was a “difficult child”.
Folks have all sorts of weird reactions to the knowledge that they are talking to someone who is intersex. I don’t always say, mind. Some people just aren’t safe to be around with that sort of personal knowledge. There are folks who aren’t comfortable with my having a girlfriend.
Yes, really. In 2014.
Such has been the success of medic’s ideas surrounding intersex status, many folks have relegated us to some mythic status they only read about in books, or via some schlocky movie. Real intersex people are some else altogether, and they often don’t deal with it very well at all.
Some will summon half remembered memories of Greek myths, others will quote Biblical phrases about eunuchs. I’ve heard it all at one time or another. Sometimes from other affected adults. There’s no accounting for folk, is all I can say.
The folk that really get under my skin, are the apologists. The ones who believe the battles have been fought and won, and tell me that it’s not at all like it was “in your day”.
I’m still alive, so this is my day, right here and now. Today. What they mean is – ‘they don’t do what they did to you, to children today’.
No. They’ve refined their interventions to such a point they can reach us whilst we’re still in utero. Describing us by a different name, or acronym has not changed a single thing for those of us born intersex.
￼We have no rights.
Chicago 2005, handed back to the medical establishment the right to do with us as they pleased. A position that had almost been wrested from them by the assiduous advocacy and activism of a dedicated group of affected adults , and their allies during the 1990’s and early 2000’s.
We were sold out.
These days clinicians will talk about genetics in the same way they used to talk about endocrinology. It’s the new frontier for defining humanity. By our genes you will know us, and decide our future lives.
I’ll bet you couldn’t tell me what my favorite colour is by looking at my gene profile. Nor my preference for women – although medics keep looking for that one. As if any such thing exists. They’re not looking for the “heterosexual” gene.
I wonder why?
Genetics is where it’s at as far as some clinicians are concerned. The key to everything. I was born in the decade that was still getting to grips with genetics. Scientists didn’t expect to find anything other than XX or XY when they first described genetic coding.
Oh boy, did they get a surprise.
There are lots of variations on genetic profiles. A single X, or XXY, and plenty more besides. The dox took a scrape from the inside of my cheek, sent it off to the only lab at the time that could analyse the data, and got a helluva surprise when the results came back.
The interventions I endured have been refined over the years. The question of whether to intervene remains unquestioned by clinicians, and parents alike. I would ￼have no more possibility of evading their ministrations now, than I did when I was born.
None of us do.
If you are born intersex, you are raised according to protocols, not as you know yourself to be. We are simply not permitted any say in what happens to us.
That has to change. Being intersex is absolutely no reason to deny our right to personal autonomy, and bodily integrity. Given the catastrophic errors of judgment that have been made by clinicians when assigning sex to intersex infants, we should really have protected status until we are old enough to have that conversation on our terms. Whenever that may be. It doesn’t happen at the moment because medical authority has ruthlessly denied any space for that dialogue to take place.
There are clinicians on trial in the US for the terrible decisions they collectively made in a case that has come to be known as ‘MC’. Christiane Volling won unprecedented damages (in Germany) when she courageously took the clinicians to court for what they did to them, in 2009. And won. This is happening in the twenty-first century.
These cases may be the first of their kind, but if doctors continue along the same path, they will not be the last. Pre-natal dexamethasone. Unlicenced for the use it is being put, not “a standard of care” according to clinical authorities. Still it’s use continues. So afraid are clinicians of what may come to pass, they try not to talk about it all.
Where does this get any of us born intersex? Who is listening? Not the official channels, that’s for sure. They want preppy, up-beat stories about us overcoming the odds. Odds stacked in our way by those same people who don’t want to talk about our situation.
Very few parents want to talk about our rights, either. Doctors rely on parents to sign the consent papers. That draws parents into the process that maintains the entire edifice of medical management directed at anyone born intersex. They are invested in it succeeding.
￼Parents who still hold fast to that faith in medicine, often declare that we are made in God’s image …. except those like me, apparently. God doesn’t make mistakes. I gave up reasoning with their like years ago.
People don’t like being called prejudiced, but as far as intersex goes, they are. They only seem able to discuss intersex in abstract terms, but sympathy for our situation is tempered by them admitting they’d probably do the same if they found themselves in the same situation with an infant.
Laws have to be changed, to protect us.
Some clinicians hint at the realisation that they are vulnerable to more direct observation of their methods, and that they can continue only because the laws permit them to do so. Methods that continually fail to survive widespread public scrutiny. That’s why they’re so determined to keep the dialogue within their own carefully controlled arena. Clinicians didn’t take kindly to the UN Special Rapporteur’s report earlier this year, that looked at intersex medical interventions. A letter was written and sent to the Special Rapporteur, signed by various names associated with intersex medicine, objecting to a scrutiny that described forced sterilisation, and infant genitals surgeries as “torture”.
Intersex is the last taboo for many. We live in a world that refuses to see us, and denies us the basic human rights taken for granted by unaffected infants, children and adolescents. Our situation has to be taken out of the medical environment, and people’s attitudes toward difference, sex and gender identity addressed directly. Intersex challenges, and disrupts many folk’s firmly held beliefs about what it is to be a man or a woman. So we are changed to assuage the concerns of others.
￼The rules, if they can be called that, hark back to Biblical interpretations of man and woman, and the Classics’ education of those proto-clinicians. And a man called Richard Von Kraft-Ebbing. Look him up. He wrote in Latin, and coined complex names for the differences he identified, to give it an aura of authority. He had some choice thoughts about women who possessed a clitoris larger than deemed acceptable.
You’d be surprised just how much of what he wrote remains intuitively accepted in medical orthodoxies directed at anyone born intersex today. A lot of what people think they know about intersex identities, and their presumption about “our” confusion, can be traced back to those early writings. Between them they laid the foundations for what was to come. John Money.
I grew up in the era that Money’s ideas bestrode. Everyone born before 2005 did. Medics don’t really want to talk to anyone born intersex from that era. We are a reminder of the darkest days; days they’d rather forget. Just like my mother would rather forget, and cannot. Swatheing us in genetic descriptions, as the Current orthodoxies do, is simply the latest means of illustrating our differences, at the expense of our being.
Ignoring us doesn’t make us disappear. Out of sight is not out of mind. Nobody should have to undergo the prurient gaze, and intrusive interventions that orthodox intersex protocols dictate. One day those born intersex will have what I, and others continue to be denied – the right to live as we know ourselves to be, with all the rights of personal autonomy that we are entitled.
My girlfriend says I can tell you they think the medics who got to me were barbaric.
They will remain so until everyone learns to understand our differences are no threat to anyone, least of all ourselves, and they listen to what we want, rather than what we are told is good for us.
That day will come. I intend to be around when it does.