Sunday 30 March 2014

The Power Of Believing, Or Self-Deception

Even as a child I was always the curious one, reading books and taking things apart to see how machines and the universe itself worked. Trying to make sense of things around me defined me as a person. Yet part of what bothered me about human society wasn't really put properly into words until I began to read Terry Pratchett's Discworld series. I think it was the book 'Small Gods' in which it was first mentioned.

In the Discworld universe it's commonly accepted that a god or goddess can only exist with believers and that if enough people believe in a certain god, that god will come into existence, taking its place among the others at the really tall mountain at the center of the (flat) Discworld world. This is no different from in real life, where countless deities have been imagined and forgotten about again. While believing in a certain deity does not cause it to spontaneously pop into existence (as far as we know), the basic principle remains the same. Not just for religions but also for countless other things in human society.

When separating reality, we can divide things into 'real' and 'imagined', or more succinctly 'scientifically verifiable' and 'exists only while people believe it does'. Countries are an obvious fabrication falling into the latter group, as pointing to the ground and saying 'my country starts here' would in another time be deemed a sign of lunacy and cause for concern about said person's mental well-being. The difference between it and proclaiming to have heard voices instructing one to run around the city naked while covered in maple syrup are marginal at best. At most one can say that the first instance has certain financial benefits.

To any rational person it should be blatantly obvious in the face of the available evidence that there are no gods, that countries and currencies are a fabrication. That many things we humans concern ourselves with on a daily basis are completely thought up and of no relevance outside this imagined fabric of society. Relationships are another thing like that. To the unclouded mind it's impossible to not see that once one cuts away the frilly details, heterosexual couples exist for procreation. Or simply put, combining the genetic programming instructing the individual to produce offspring with the human brain's tendency to feel lonely and seek companionship. That these couples form solely based on what one's programming says are the desired parameters in said companionship should make it abundantly clear that the frill of 'love', 'soul mate' and such are the cover story humans make up to excuse these basic desires and give them an apparent purpose.

Opposing such sexuality-driven relationships is cooperation, whereby individuals come together to work together on a common goal. This is the purely rational type of relationship and generally referred to as a Platonic relationship. The only reason why not everyone is in the latter of relationship in society is due to the genetic programming. See for example so-called asexual individuals, who demonstrate a complete disinterest in sexuality. What this demonstrates is that many things in human society and interactions are driven by genetic-level programming. Even more interesting is how this type of programming can be passed on to offspring using epigenetic programming, which is a kind of meta-level on to top of regular DNA, provoking single-generation evolution.

Finally there is another type of programming at work, this one working on a neurological level in the form of viruses. Not physical, RNA/DNA-based viruses, but memes: certain thought patterns which can be transferred between individuals and which - if accepted by the new host - can alter the working of one's brain on a fundamental level, changing perceptions and behaviour. This is where the imaginary reality largely comes from. Ideas are memes, in essence. The idea of a country, of one individual being better than another (see kings, ministers, apartheid, etc.) are such memes. They propagate within a society, much like a physical virus does. Some memes are successful and find rich breeding grounds, while others fade and disappear.

This pattern memes follow coincides with the appearance of new countries, religions and cultures. At one point there was no Christianity or a Christian god, yet then it was imagined and became a successful meme. A few hundred years ago there was no United States of America or even the concept of it, yet now we can not imagine otherwise. This also shows that wars are due to memes. Because of memes which lived in Europe in the late 19th and early 20th century the First World War became a fact. The memes responsible did not vanish after this, resulting in the Second World War and many smaller wars and conflicts lasting until today. All that people in them fought for was imaginary.

And thus we have come to the thing which puzzled me as a child already: how people can so strongly believe in things when there is no rational basis for it. As a child I struggled to accept that other children believed in Santa Claus and the like, as well as went to church in the belief that some supernatural being wanted them to do so. It always made me feel very awkward, such as when I visited such children at their home and they started praying at the dinner table. I didn't want to call out the new clothes of the Emperor for what they were, as that would be offensive.

The past decade my focus on what is and isn't real got another major test, when I had to separate fact from fiction in my own medical case. What were the facts, who was lying or just plain wrong? Why did I get such wildly differing results? Could hidden agendas be at play here? What medical politics was keeping those physicians from just being honest with me? And so on.

What those experiences have taught me the most is that I do not care in the slightest for imaginary things and that I would much rather spend my life living as far away as possible from religions, countries, politics and other purely imagined fabrications of the human mind. In the end they bring one nothing good. Scientific reality is where I have found solace since I was young, as it never lies or betrays and rejects deception.

In so far as I wanted to say anything with this post it probably is that want to make clear to myself and others why I think and am like I am. Truth, logic and reason have always been the cornerstones of me as a person and I do not wish for this to change, no matter how tough things may get. While it's easy to lose oneself in an imaginary reality, in the end it's where one loses one's humanity to the chaos of neurological and epigenetic programming. I do not wish to end up like that.


Maya

Friday 28 March 2014

How I Am Doing

I am doing fine, after a difficult start in Germany things are now settling into place, with my own apartment, things going well at my job and I might soon see an end to my medical troubles thanks to my new family doctor and surgeon. I meet more and more people and am having more of a social life than I have ever had before. I'm rapidly learning German and becoming a part of this country. My work on the technical reference book on AndEngine as well as my autobiography is continuing.

I am doing okay, it's still a struggle, with issues with the apartment I rented continuing including the noise from the central heating system. At my job things are all right, though my past keeps haunting me when I'm being chided for being too shy and withdrawn. I want to explain, make everyone understand, but I know they never will. I know that I would not really be missed if I suddenly were to vanish. It's okay, I have always been quite invisible. I have some hope that the surgery will work out, but a decade of experiences tells me to not put too much hope into it.

I'm not doing very well. In the store today I had to cringe and force my thoughts into a non-dangerous direction when the music playing in the store contained lyrics involving the phrase 'making love', which is one of those phrases which trigger my traumas regarding sexuality. I feel assaulted any time, anywhere like this. With couples everywhere holding hands, kissing, fondling and what not, I keep having to divert my thoughts to keep myself from freaking out. I'm secluding myself due to this, not meeting people and preferring to keep my distance. I don't want to accept that people have relationships and that sexuality is an actual thing. If I did, I would break down. I know that I'll never get surgery or any proper help with my intersex condition. I know that this will keep worsening my traumas related to sexuality and related.

All of this is true, and all of this is false. These are parallel realities which regularly cross into each other, swapping places and diverging again. Each reality is no more real or fake than the other. None of them can tolerate the others. At least one of them is self-destructive and drives me to complete despair.

There are some ways out of this situation. One of them involves a successful surgery. Late next month I have my initial appointment with my current surgeon. The logistics for this appointment I still have to take care of, regarding travelling, possibly staying the night somewhere. I would love to have someone accompanying me for mental support to the appointment. If it works out, I could have surgery within two months. It would enable me to begin healing from the damage done to me by the Dutch physicians and psychologists as I could finally form a healthy self-image.

My problem is that of this intense hatred against sexuality and against my body in general. I loathe, hate and despise both, as both are closely linked. Not hating myself and not wanting to mutilate or destroy this body I inhabit is one of my full-time jobs. I accept that I will lose this struggle in the long run and thus I need help with it to prevent a certain descent into destruction. At this point this surgery is the only thing which I know of that could help me.

Why? Because I'm still waiting for myself to accept my body as it is, as at this point I do not know anything about my body. People tell me that I am intersex and a hermaphrodite, while others say I'm not. I have been physically and psychologically raped by physicians and psychologists so many times that I feel disgusted looking at this body. Always ready to accept another physician to violate it and a psychologist to condemn it while destroying any sense of worth I might still have.

This surgery could give me back my body. It would at least show to me what my body is truly like instead of some freakish distortion. I'm not a woman. I'm not a man. I'm not intersex. I'm nothing. Just a freak. Yet all of that is nonsense. I can not escape this infinite cycle within my thoughts. If I had this surgery and could finally see and feel for real what my body is, I could maybe break this cycle. I could be myself for the first time in my life. Maybe it would also finally allow me to feel like an adult, instead of a scared, abused child.

There's no need to ask how I am doing right now, for I don't exist.


Maya

Thursday 27 March 2014

Intersex Discrimination Hearing Results And My Ambiguous Feelings On The Netherlands

On Monday the 24th I travelled to my current home city of Karlsruhe, Germany to Utrecht in the Netherlands. There I met up with a friend of a friend at whose place I would be spending the night. The next morning I made my way to the office of the College voor de Rechten van de Mens (Human Rights Institute) for the hearing which took place there against my former health insurance company Univé. Representatives of the general health insurance organization CVZ and from the Ministry of VWS (Health, etc.) were present as well.

During the hearing which took well over an hour the facts as they had been gathered in the letter exchange of the past months (detailed on this blog as well) were put together. In essence it came down to that the Ministry hadn't done anything untoward as the legal article they had written was neutral and implicitly inclusive. The interpretation of this article by CVZ was addressed, however, as the interpretation they had provided of said article had been unclear and focused on transsexuals. The question to CVZ by the College thus was how they defined 'intersex' and whether this falls into their interpretation of this law article.

CVZ seemed to be quite ignorant of what intersex exactly was, quoting a statement by one of their medical advisors that only three types of intersex were defined before (hermaphroditism, semi-hermaphroditism, gonadal), something which is patently false. They then went on to reference DSD as the new and current term, which would be better because it is more inclusive. While I vehemently disagreed with this statement, I did not interject or otherwise object against these statements as it did not directly affect my case. CVZ ultimately did agree that there are a lot of conditions which would also fall within the reference frame when applying this law to individuals. The conclusion here was that with me being intersex, I should have received full coverage.

Finally Univé was left to make a statement on how it wished to proceed from this point. Here a clear tactical retreat was made, with the Univé representative stating that they might be willing to retroactively cover all of the costs I have made while undergoing the hair-removal therapy over the past years (over 6,000 Euro still uncovered), if they could verify via an independent Dutch physician that I am in fact intersex. The College asked Univé to clarify what kind of medical information they would further need to prove that I am intersex, quoting a section from a report from the surgeon from Hamburg in which he stated that I have an intersex body in his professional opinion. Univé responded that they did not know this information and would ask their medical advisor.

Then the College asked me to comment on this proposal. I objected against the demand that it would have to be a Dutch physician, explaining the complete disagreement between Dutch and German physicians on my physical state. I suggested that the reports by the now four German medical teams would qualify as 'independent' since they have no connection or relation to me, Univé, the Dutch medical system or anything else which might make them not impartial. Finally I mentioned my visit to a German reconstructive surgeon next month who will reconstruct my female side. In my view this already fully proved that I am in fact intersex.

A brief recess was called. Outside the hearing room the representatives and I talked about the case, finding that we pretty much agreed on everything I had said and finding no points of disagreement. On the contrary, we all agreed that it was a very weird case, especially with the unusual reports from the Dutch physicians who completely counter-indicated everything the German physicians said, despite the surgery done in Germany in 2011 decidedly refuting the Dutch reports. As the recess ended we went back into the room.

The College asked me whether I would be willing to take Univé up on this offer upon which I repeated my objections. Univé responded to this by saying that they would talk with their medical advisor again and would let both me and the College know in about two weeks time what information they would require from me. This I found to be acceptable, changing the case into the mediation situation whereby Univé and I will try to settle our differences. I argued to the College that if Univé covers the costs I have made it would be sufficient for me as this is what I initially set out to accomplish.

With this the hearing ended. It'll take about two weeks now before I know whether I can settle matters with Univé or that it has to go back to the College for judgement. All depends on what Univé thinks they require to prove to themselves that I am intersex. Apparently the Dutch judge's ruling in 2012 that I am in fact intersex and a stack of reports from four German medical teams doesn't suffice. If they keep up their claim of only accepting a Dutch physician's report, then I fear that it will have to go back to the College for a ruling. Dutch physicians at this point have proven themselves to be completely and utterly unreliable if not untrustworthy when it comes to handling intersex cases.

My way back to Germany after the hearing was uneventful. Walking back to the train station in Utrecht I observed everything around me, but didn't really detect any sense of longing or loathing. My feelings towards the Netherlands in general are more of an uncomfortable sadness. While I loathe the Dutch medical system with all my might due to what they have inflicted upon me, I do not dislike or hate the country in general. Having spent a few months living in Germany I also got impressed by just how small the Netherlands is, in a physical sense. It makes me question the relevance of spending much time on achieving justice in such a small country.

Crossing the border back into the Germany I mostly felt relief. The Netherlands hadn't felt welcoming or pleasant to me. While I recognize much of the sights and of course speak the language fluently, it would be amiss to claim that I in any way feel a connection with the country. It's just another country, albeit one which has done me considerable harm. I just don't know what to think, really. In fact, the next day I noticed that I felt much better about living in Germany and Karlsruhe now. Everything just feels more relaxed and pleasant here and I even get proper medical care. The Netherlands feels like strife to me, whereas Germany - though not a vacation - actually offers me possibilities. In a way I actually feel more human in Germany.

Here is to a quick resolution to the Univé case. Two years is a long time to fight over something so silly.


Maya

Saturday 22 March 2014

This Could Be The End Game Or Just More Of The Same

On Monday I'll be boarding the train towards the Netherlands in order to attend the hearing at the Human Rights Institute (College voor de Rechten van de Mens) in Utrecht as I announced in my previous post. I have prepared it as well as possible, with a nice place to stay during the night of Monday on Tuesday and the Insitute's offices within walking distance. My train tickets to and from Utrecht have been booked and I have taken up the necessary free days from my work. I have read up on the details of the case already quite a lot due to the blog posts I have written on the responses from the Minister of Health, CVZ and the like. While everything seems to be heading into my favour with this case, there are still many ways that this could play out.

Most negatively, the Institute could determine that my claim that my former health insurer Univé discriminated against me for being intersex - when determining whether I could get full hair-removal therapy coverage - is invalid due to some or another reason or loophole. Since Univé's statements have included phrases such as that 'intersex in no way comparable is with transsexuality' (paraphrasing), while CVZ's statement counteract this, it seems that a more positive outcome is likely. It is hard to tell what this might be exactly.

Also quite negatively would be if my claim would be found to be valid, but no further measures would be taken. Not against Univé, not against CVZ, not against the Minister of Health. More positive outcomes would be Univé getting disciplined or fined, either through the government or CVZ. CVZ itself deserves disciplining as well for so easily dismissing me before in the 2011/2012 case at SKGZ as being intersex. SKGZ itself falls outside the Institute's case, but the Minister of Health should get reprimanded by the Insitute at least for so completely ignoring and forgetting about a group of people in the Netherlands much larger in count than that of transgenders while drawing up and revising law articles.

We'll know in a few months when the verdict of the Institute becomes known. At any rate I hope it doesn't turn out like my case at the Medical Disciplinary Commission in Amsterdam against the VUmc gender team last year which was fully dismissed. That was a bitter defeat. Yet even in this case at the Institute I do not expect I will get any apologies or findancial compensation for the emotional and financial costs of the past years due to Univé's refusal.

At least partially I seem to be correct about Germany so far. The medical professionals here seem to be far more human when it comes to more unusual cases. When I first visited my new family doctor (GP) a few weeks ago, she learned about my intersex condition only there during that first appointment. Yet it didn't phase her one bit, taking it in stride, only commenting on it being very unusual for her, but immediately drawing up plans to find me the proper help and having no issues with contacting this German surgeon I had found for me. During our email conversation this week she even commented on how interesting she found my case to be, if only as a very educational experience for herself. I cannot remember for the life me when any medical professional or similar in the Netherlands has ever said anything like that to me.

Anyway, to make a long story short: I have an appointment with this surgeon on the 24th of April at 11.00, so just over a month to go. The clinic the surgeon works at is in the Munich area, so that's going to mean another bit of logistics. Since it's a 3-hour trip by ICE from Karlsruhe to Munich alone, that will make doing it in a single day a tough task. I think I would also like to have someone accompany me on this initial consult appointment for both practical and mental support.

While this appointment is 'merely' a consult, the surgeon has already looked at my medical files and MRI scans before so we both will go into it with the goal of setting up a surgery. Here my dreams of regaining my body by having my female side restored through a reconstructive surgery will meet this surgeon's professional reality and the limits of his skills. Here I know that I can take small disappointments and compromises. If I can get access to all that my body has been born with, that is all that I need right now. All I fear here is a repeat of last year's disappointment when I thought I had found a surgeon in the Netherlands, yet he turned me resolutely down at the last moment without a proper excuse.

To think about this surgery actually happening and it being over with in maybe two months from now is almost inconceivable to me. For a decade now I have been stuck in this infinite loop where any hope to get medical help got squashed mercilessly. No recognition, just accusations of me being a lying, self-deceiving, impossible to handle transgender person who was just making life hard for itself by being so difficult and suffering from those self-delusions about somehow having an intersex condition. Only thanks to German medical evidence have I been able to partially break out of this loop, but only a successful surgery will fully break it forever.

When I think about after this potential surgery, that I could reach down there and feel the changes. This thought doesn't carry any kind of sexual energy with it, only sheer and utter relief, enough to send me wailing into tears of thankfulness, that it's all finally over, done with it and never will come back again. This would be the end game: the proper conclusion to a decade of suffering due to the rigid, patronizing and human rights violating attitude in the Netherlands towards medical minorities.

Or just another series of horrible disappointments, sending me back to square one.


Maya

Sunday 16 March 2014

Final Hearing In Intersex Discrimination Case Against Unive

I received a letter from the Human Rights Institute (College voor de Rechten van de Mens) this week informing me that I'm obligated to appear at the next and apparently final hearing in the intersex discrimination case against my former Dutch health insurance company, Univé. This regarding Univé's decision to not fully cover a therapy for me which they fully cover for transsexuals. Their reason for doing so was that supposedly the Dutch Minister of Health as well as the central health insurance organization CVZ have only specified full coverage for the latter group and not intersex individuals. During the discovery phase the past months it turned out that this was not the case. CVZ has made it clear that this therapy coverage can also apply to intersex individuals.

The hearing itself is on the 25th of March, at 11.00 AM at the Institute's office in Utrecht (Kleinesingel 1-3) and is open to the public. This means that I will have to travel to Utrecht on the 24th and spend the night somewhere as the trip from Karlsruhe takes about 6 hours, which would force me to board an ICE around 3 AM to make it to Utrecht in time. I'm still sorting out the logistics of how and where I'll stay. Any help with this would be most welcome. Somewhere in Utrecht would be the most practical, I'd imagine.

This will also be my first time back in the Netherlands after migrating to Germany in December last year. To me it brings back many painful memories and feelings, both positive and negative. It reminds me of how much I miss the Netherlands in some ways, but also of why I had to leave it. Dealing with these contradictory feelings combined with my PTSD and having to organize the logistics of the whole trip is putting me pretty much at the limits of what I can take emotionally.

At the end of the hearing on the 25th it will be announced when the Institute will pronounce their official conclusion in this case. Though they can not enforce Univé to do anything, it would nevertheless set a strong precedent for any future legal case, whether by myself or others. I do not think that there is a reasonable chance that I will see back the around six-thousand Euros I should have received back with full coverage, but it is something which has to be done nevertheless. Justice is more important than anything else.


Maya

Saturday 15 March 2014

All That I'm Worth

I don't know what is reality. Either it's those moments when I feel energetic and can see my life slowly taking something of a shape, or it's moments like right now when I know with overwhelming, crushing certainty that this is how far I'll get and that anything more is a fool's dream. So far the last type is in the overwhelming majority for as long as I can remember. I'm just living in the overtime granted to me by not actually dying in that suicide attempt, three years ago. Technically I seem to be undead.

Anything I decide upon to buy or do for myself is based upon how much I feel my existence is worth at that point or what kind of future I think I will have. Looking at how I haven't bought a single piece of clothing for myself since arriving in Germany even though I barely have any winter clothes and just keep wearing the same week after week. I still don't have a functional washing machine at this point, though. Another sign to myself that I'm not worth it. The barely functional kitchen I have assembled and failed cooking attempts so far also underline that I'm not worth it.

Finding a place to live in Germany has been a downright nightmare. I'm not sure it's really any better here than in the Netherlands. Either meant paying a lot of money for little in return. I of course ended up in an apartment of which I can not use part of the rooms because the floor in them has to be replaced and where the rolling shutters are so old that the insulation is gone so that cold air keeps flowing into every single room, making using the heating system somewhat futile. And did I mention the ticking from the heating system which forces me to sleep with earplugs in every night?

I'm sleeping on a mattress in the one room of my apartment I actually live in, because I do not have money for a real bed. I'm not sure I will buy one, though, because I do not feel I'm worth it. Same for food, I eat little and nowhere near as healthy as I used to, but I can not care too much, because it's all I'm worth.

Within two weeks I'm having a hearing in a discrimination case against my former Dutch health insurer back in the Netherlands. Though it's become a bigger case than I had anticipated, I still don't expect anything from it. Same for my autobiography. Nothing will happen and nothing will change, because I'm not worth it. All I can do is turn off my feelings and fulfill my obligations.

I will not get that final surgery as no surgeon can be found willing to help me. Because I'm not worth it. There'll be no help for my PTSD, because I'm not worth it.

I'm a little cog in life, only expected to keep turning happily. I'm supposed to grit my teeth and smile in public, while I cry in unbearable pain in private, because I'm worth it. I'm not supposed to strive to be happy or have dreams for the future.

Because I'm not worth it.


Maya

Why DSD Is Destructive For Human Rights

The last few weeks the world media has been covering the outrage surrounding Uganda's decision to make homosexuality illegal, narrowly missing its original goal of making it punishable by death. Instead anyone found to display homosexual behaviour is sentenced to life in prison. According to President Museveni of Uganda his inquiry into whether or not homosexuality is genetic or social behaviour was answered by 'medical experts' that it's fully learned behaviour [1]. In countries such as Iran, Mauritania, Saudi Arabia, Sudan and Yemen, as well parts of Nigeria and Somalia homosexual behaviour is punishable by death. In another seventy countries people are imprisoned for such behaviour [2].

As exemplified by the statements by Uganda's president, the entire witch hunt against individuals with homosexual or bisexual preferences is based on misinformation, the spreading of fear and outright lies. The most remarkable and least reported on part of this is the reasoning behind such decisions to make something which does not affect society as a whole into something on the same level of criminality as murder and terrorism. Here conservative religious values on sexuality combined with a political agenda appear to be the most likely culprit for inciting such blatant and horrific violations of human rights.

Yet it doesn't end with homosexuality. Many other types of behaviour are also punished in a similar manner, and astoundingly around the world including in the most rich, prosperous Western countries millions of infants and children undergo forced surgery to remove unwanted features from their bodies. Not for medical reasons, but simply because society deems them to be 'unwanted' and 'uncomfortable'. These are the individuals who were unlucky enough to be born with a body configuration which differs from a biologically male or female body in genotype, phenotype or both. Those born with such an intersex condition only rarely need any kind of medical help during their life and are generally unaffected by it, health-wise. Human rights activists have been fighting for their right to decide about their own body as well, albeit in a far more limited fashion than for homosexuals.

Quite recently this struggle for human rights for intersex individuals took a sharp turn for the worse, as supposed physicians decided to change the terminology for intersex, indicating that from then on it should be called 'DSD', or Disorder of Sex Development. While seemingly a minor change, the implications of this is astounding, especially on a psychological level. Just imagine how it changes how an individual can present and be perceived by its environment.

With intersex you can say 'I am intersex' and 'our child is intersex'. With DSD this becomes 'I have DSD', 'I have a disorder', or 'Our child has a disorder'. The automatic stigma is obvious. To society it seems clear at that point that the child was born with some horrific mutilation but that surgery and therapy will take care of it, and that the individual who reports to have DSD has something on the level of a mental or physical deficiency, as though they are some kind of retard, if you'll excuse my language. This whole naming scheme completely nullifies any attempts made by intersex activists to make it a discussable, socially acceptable thing to be.

As an intersex activist myself this is exceedingly disheartening to watch, especially when some intersex individuals also assume this DSD term, as though it will somehow improve their situation. To me this is more an indication of how horribly medical society treats intersex individuals, that the mere promise of better treatment or a reward will have them crawling back to their masters. I have been in this situation myself with the Dutch physicians long enough to know how it works. In the end it just leaves the affected individual scarred and traumatized. We don't need more victims.

It all comes down to scientific facts, whether it's about sexual preference or the phenotype of one's body. One is born with it and nothing but unwanted, invasive surgery is going to change this to some extent. Sexual preference is hard-coded in the layout of a specific part of the brain and the complex interaction between genes during development makes it more astounding than not that so many children are born with a phenotype which gaves at least the appearance of them being male or female. This is also a part where I have been extremely lucky.

Being born in the Netherlands, where so-called 'normalization surgeries' on intersex infants are common place, if it had been discovered at birth that I also have female genitals I would have a scar now on my abdomen through which they would have ripped out any kind of female organs they could find, including the vagina, ovaries and the like. I wouldn't have been told about this until maybe as a teenager or adult, if at all. I would have had to deal with this intense feeling of loss and of being violated. This is why getting this reconstructive surgery is also so important to me: I was lucky enough to escape such barbaric surgery as in infant, but without this reconstructive surgery I might as well have been the victim of it.

That I want surgery is not due to an immediate medical need or urgency. It is my personal choice to shape my body the way I want it, using the organs I was provided with. What I desire is far less significant than what a transsexual person would undergo with a sex-change surgery, which makes it ever so more bitter that it is so hard for me to find a surgeon for it. In the end it is all about personal choice with intersex, homosexuality and transsexuality. If you know absolutely certain that something will make you happier and you don't harm others with it, then it should be nobody else's business.

Yet this is exactly why DSD is so harmful: it removes the option of choosing for oneself, as by designating it a 'disorder' which medically means 'a disruption of normal physical or mental functions' (Oxford, 12th edition). If strictly interpreted this would make anyone who is infertile, has reduced fertility or anything even vaguely related to anything which could be the result of genetics or development issues a DSD sufferer. It would also mean that anyone who is intersex yet fertile not affected by DSD. This shows why it is sheer lunacy to use such a term instead of the more accurate 'intersex'.

A disorder is by definition something which has to be acted upon and treated, to restore normal functioning. Looking at my own case, however, if I had grown into the role of being a hermaphrodite from a young age and would just have had those few surgical 'tweaks' to steer things into a direction I would feel more comfortable with, then I would not be suffering from severe PTSD and have an innate distrust against medical professionals. The past decade to me has been the most horrific I could imagine, completely thanks to the Dutch medical system. Yet it's not just the Netherlands. While I fled to Germany to escape the persecution I suffered in the Netherlands with so far mixed results, places like for example the United States are also quite hostile against intersex individuals. Take for example this entry from the FAQ at the North-American Accord Alliance, a self-professed intersex organization:

"“Hermaphroditism” and “pseudo-hermaphroditism” are outdated terms that used to be employed for some forms of disorders of sex development (DSD). These terms have been abandoned because they were misleading and stigmatizing." [3]

There are many things wrong with these two sentences. First of all, the medical term used for my intersex condition here in Germany as displayed on all of my medical documents is 'Hermaphroditismus', or hermaphroditism. The term DSD is not used in Germany in any significant sense. Hermaphroditism is not an outdated term and has not been abandoned. I also vehemently disagree with the 'misleading' and 'stigmatizing' parts. The misleading parts because the formation of the word in Greek mythology is extremely fitting, with a hermaphrodite being formed out of a male and female as a single being, which is exactly what the condition is. There is no stigma either. What stigma would this be, anyway? People generally view hermaphrodites in wonderment, amazement and in some cases even a kind of reverence. True, there is the occasional individual who just can not comprehend a single individual possessing both male and female genitals, but those are the exception.

Further on the Accord Alliance site we find further claims that DSD is the perfect term and that a child afflicted by this horrible condition can be saved through the proper surgery and therapy. Guess who will benefit the most from these expensive undertakings? Hint: it's not the parents or the child. The skeptic in me finds it hard to deny the possibility that ultimately the term DSD was invented as a mixed result of religious conservative fears for the unusual and the desire for more money by medical and psychological 'professionals'.

To most intersex individuals it is clear that 'DSD' is a horrible offence, though, and we refuse to apply it to ourselves. Organizations such as Accord Alliance do not represent intersex individuals. They are more like president Museveni: touting scientific nonsense as an excuse for their continued existence and relevance. Their existence neither benefits nor sustains humanity's progress towards an accepting and progressive society, instead forcing it down towards a medieval-level of ignorance and suffering.


Maya


[1] http://en.wikipedia.org/wiki/Uganda_Anti-Homosexuality_Act,_2014
[2] http://www.bbc.com/news/world-25927595
[3] http://www.accordalliance.org/faqs/what-is-hermaphroditism/

Thursday 13 March 2014

The Convoluted Mind: How Experiences Distort Our View Of Reality

As a hobbyist AI researcher I have often found myself pondering on the exact workings of the human mind, and biological neural networks in general. The most fascinating aspect about it I have always found that of the creation of what I have come to call an 'internal universe', or IU. Essentially it's an internal representation of reality which doesn't necessarily match up with the actual reality. This IU can also contain completely imaginary things which in actuality do not exist, or distortions of factual processes to give it another interpretation.

Before I dive into this topic of internal universes, though, allow me to first address the nature of a biological neural network (BNN) and the way experiences and memories affect it. The essential aspect of a BNN and neural networks (NN) in general is that of input. Without input (the 'brain in a jar' example) there's no point to an NN. The basic and most essential function of an NN is to transform or convolute input. Lack of input will generally lead to self-destruction in NNs with active internal feedback mechanisms (see sensory deprivation experiments).

This input we can refer to as 'experiences' and the recollection of such input as 'memories'. They form the foundation and corner stones of the functioning of a BNN. Their role in the BNN is both formative and functional, in that the input (I) and recollection (R) are required during the formation of a BNN to form the proper structures. This process can be observed in infants, for example, where the type, intensity and duration of input they are exposed to during their first months and years can lead to the formation of a BNN which produces very distinct and quite predictable output (O).

A NN is by definition very unlikely to respond by itself in a manner which can be considered logical. Instead it appears to become 'programmed' by the input, which modifies and adds to the convolutions applied to the input signal. Most of the resulting behaviour (output) is simply handled by fixed parts of the network, resulting in what is referred to as 'instinct' or behaviour routines. This results in a predictable, fixed response (convolution, or C) to a certain type of input, in the form of I -> C -> O.

Naturally, the intriguing and defining part of a NN is its self-modifying functionality, which is of varying capability in different individuals. This process takes place in different parts of the BNN, from the lower, less advanced sections of the network, to the newer, more complex sections. In the former sections we see the above process, of input directly modifying the structure of the network. In the latter sections we encounter what is commonly referred to as 'intelligence' or 'reasoning', but can also be called more broadly as self-awareness (SA).

SA is the ability to reflect upon and predict the consequences of a course of action. It is a reasoning process involving the awareness of oneself and also the essence of what AI researchers are trying to emulate. SA is also the core of the IU. Imagine SA at the core of this universe, with recollections, input, convolutions and active feedback (AF) surrounding it. This model is essentially the model of a personality, as it's referred to. In this model, SA is a semi-passive presence in the NN, monitoring its surroundings and trying to compose a functional model of the reality outside the NN. This leads to the IU.

In short-hand form: C(I + R + AF) -> SA(IU) -> O.

The interesting thing about this model is that it seems to form an adequate model for human behaviour and interactions, including in large groups. It explains why the old adage that no two people will ever fully agree on anything is theoretically true, as the possibility of the IUs of two individuals matching up fully is extremely remotely. While the SA can semi-directly access the I by suppressing convolutions and thus validate the IU against reality (the underlying principle of the scientific method), this is a limited and intensive process. Only a strong SA can sufficiently do so, and may then still be blocked by the limitations of the IU due to previous input. This is the underlying principle behind psychological trauma, where a sufficiently strong input can cause a strong AF process involving R. This is what happens for example in PTSD, where the AF result can be overpowering, even for the SA and its IU.

Soon I hope to further test this model using software and FPGA-based implementations. The prospect of this theorem making it into a replacement for psychology and foundation for AI seems promising at this point.


Maya

Saturday 8 March 2014

Frustratingly Not Like Everyone Else

As I attempt to integrate back into regular society I'm met with a lot of frustrating realizations. My unusual body, for one, is making for sometimes awkward conversations with others, something I have written about before. Then there is the inability to squeeze the reality of my life into the confines of an 'every day person'. Between doing interviews for newspapers, magazines, radio and TV on a regular basis, writing my autobiography and handling a number of court cases related to my intersex condition, I already have a full-time job just there. Add to that the full-time job of managing my PTSD condition and arranging the last major parts of the highly unpleasant medical chapter of my life.

To then pretend that I'm just a regular 'nine to five' person with only a minor interest in activities beyond working and hanging out with friends and family is frustrating me. Worse, it makes for a disconnect between it and reality which is exceedingly stressful. My past and current reality is and will forever be an intrinsic part of who and what I am. I don't even want to change it, regardless of how often I have wished to just be 'normal'. My goal in life isn't just to be like everyone else. My experiences the past decade has given me a new mission and goal, involving the prevention of the kind of suffering I went through. I can not just live out my life ignoring this. There is no happiness that way.

I don't know what my future will look like. A big problem in advancing is money and having to rely on the help from others, which both are tedious and slow processes. It's not very puzzling that I generally do not feel like I even belong in this world. Beyond a few people I have met it doesn't seem like my life overlaps with that of virtually anyone on this planet. I'm a perfect stranger in a strange world.

By the end of this month I'll be visiting the Netherlands again for a hearing in Utrecht at the Human Rights College involving the intersex discrimination case against me by my former Dutch insurance company Univé. I still have to see about the logistics for this, as it's about a 6-hour trip from Karlsruhe to Utrecht one way. At least I'm making some progress on a medical level as I should have an introduction appointment with my new GP next week. I hope that she can help me speed up the communication with the surgeon. This, too, would mean a number of train journeys, hopefully surgery and a recovery period of a few weeks at least.

For me this all is reality. Anything else is secondary to it. Not because I want it to be, but because I have no choice in this matter. My life's course was set in stone already before I was even born. To be born intersex means living a tough, lonely life, fitting in nowhere and facing ridicule at every point. All I can do is to try and change this. Living a life like everyone else with a regular job, home, family and such is not part of this. Where I gain something, my PTSD makes it abundantly clear that none of it will last. None of it ever has.


Maya

Thursday 6 March 2014

Hospital Again, Or: Lucky And Unlucky

Yesterday I had the unexpected pleasure to visit another one of Karlsruhe's fine hospitals. I had just finished up everything at home with the replacement parts for the refrigerator I ordered via Redcoon being delivered, did a check-in of my code for my current project for Synyx and had let colleagues know that I was heading to the office now. It was a bright, sunny day, so when I got on my bicycle I also put on my sunglasses.

Everything went fine up till the Durlacher Tor area of my route. Everything there is construction due to the subway construction work. The paths for bicyclists are a bit improvised for that reason. On this occasion I took one possible path which led me closer to the cars also driving there. I had driven there before on my occasions without problems. This time however, things didn't go the same way. From the corner of my eye I saw a black car heading my way, so I diverted more to the right so that the car narrowly missed me. Unfortunately this led my bicycle's front wheel straight into a tram track. Unable to steer any more I thus crashed into a construction barrier and landed heavily onto the road.

My first thought was one of embarrassment, me crashing in such a silly way. I got up, noticing a bad pain in my left arm, but ignoring it. Some people had noticed my fall and came to assist. One of them must have taken my bicycle to the sidewalk. I just limped to the sidewalk, cradling my arm, as dizziness threatened to overtake me. I felt sick to my stomach as I sat down on the sidewalk, to then just lie down. I guess I have must slipped into a bit of shock due to the pain. Around me people were being busy, calling an ambulance, taking off my sunglasses, trying to pour tepid water into my mouth. Then some firemen came to assist. They stabilized my left arm after I indicated that it hurt a lot.

These firemen took control of the situation until the ambulance arrived. I don't remember too much of this part, fading briefly into unconsciousness now and then as many thoughts passed through my mind. Strangely enough I didn't feel too bothered by the whole situation beyond my arm hurting so much, feeling quite detached from things. It almost seemed routine to me. Me having something happen to me again and being taken to a hospital. Story of my life, or something.

As the ambulance personnel and the firemen managed to get me on the stretcher and my backpack and shoulder bag removed from my person, I was wheeled into the ambulance where they assessed me. Here I switched to speaking English for the first time since the accident, managing to answer questions in German up till that point. As far as we could figure out together I had fallen onto my left arm and it was possibly broken, but nothing else seemed to be hurting. I was taken to the hospital and arrived in the ER. There a doctor made another assessment, with the female assistant helping me undress and change into a hospital gown. I received a tetanus boost shoot and an IV drip. After that I was carted off to the radiology department for an x-ray.

I was lying there in the hallway for a while until the x-ray was made, then got wheeled to another room which was the plaster room. At this point I was quite convinced that my arm was broken and I'd be receiving a cast. It took another ten minutes or so before the assistant arrived and as she wheeled me out of the room she told me the good news: I did not have any broken bones or fractures. Back in the ER the doctor did tell me that possibly the tissue around the elbow joint which keeps it lubricated might be damaged or burst, but I should give it a few days and see whether it still keeps hurting. If it did I should see another specialist.

After getting dressed again with some help from the assistant I received some strong painkillers and the required stomach protectors. I then noticed that my sunglasses were missing. Probably left at the accident site and now most likely gone. After thanking the doctor and assistant I proceeded to shamble out of the hospital. Fortunately it wasn't that far too the Synyx office, so I walked there. There I wrote an email about what had happened and that I would be going home for the day, with no promises about tomorrow. Only then did colleagues begin to realize that something had happened. Strange feeling to just come out a rather unpleasant situation and then not having anyone notice it. I also took the first batch of the painkillers there before making my way back home.

I still had to pick up my bicycle at the site of the accident, where it was chained up. On my way there I had this woman call out to me. As she approached me on her bicycle with child in tow on its own bicycle, she explained to me that she was the one who had called the ambulance earlier that day for me. She was right behind me when the accident happened, but was too shocked to remember the license plate of the black Audi which nearly hit me. We talked a bit about who I was, my German skills and cycling in Karlsruhe. As we said our goodbyes I thought that maybe I should have given her my business card so that we could have stayed in touch. Then I figured that we'd see each other more often, as we often cycled the same route.

After getting home I found myself thinking about how lucky and unlucky I am, to the extent that they almost seem to cancel each other out. With every accident I have been in I have never suffered anything too serious. The first time I had a major accident with my bicycle was over a decade ago when I hit the tarmac at about 60 km/h and suffered nothing more serious than some lost skin on the palms of my hands and a mild concussion. My most recent accident could easily have resulted in broken bones, a head injury or worse. Yet as I'm typing this, nearly a day after the accident, I'm feeling relatively okay, aside from an extremely sore left elbow and general bruising and soreness all over amidst a few minor wounds on my left hand and knee.

In many ways I'm lucky, being gifted, ambidextrous and always finding a way out of any situation, no matter how difficult. Yet these same situations I end up in due to a severe lack of luck. Having been born in a country where the body I was given was considered unacceptable leading to me having to suffer for many years, and where similarly my giftedness was more of a curse than a blessing. Always meeting the wrong people and getting hurt by them, yet also meeting people who get me out of difficult situations. It's as though my life doesn't know any middle ground. It either has to be extremely negative or extremely positive.

Yet the negative seems to win out in one way at least: via my PTSD (Post-Traumatic Stress Disorder). Imagine the world around you as you normally see it, then overlay a filter which interprets everything around you as a possibly or definite negative thing. Imagine always feeling a sense of dread and terror, as though anything positive will soon turn out to be negative. Always feeling hunted and watched. Never being able to trust others, always suspecting them of either not really caring about you or having a hidden agenda. It sucks out every single bit of joy one could have in life. There is only bleakness, death and decay. True, I can push away the filter with some effort, but it's like holding back a heavy curtain. At some point your strength will fail and the curtain slides back into place. This way I'm trapped inside this world I hate with all of my soul.

People have been trying to reassure me a lot lately that things are going fine for me, that my future is looking bright. TO them I had to explain that the problem isn't with my future. The problem is my past and the daemons living in it. Whenever I try to get down to the reason why I feel so terrified and unable to do many normal things all the time I can feel this 'something' inside my head, like a large immobile object. I can however not figure out what it is or what to do about it. I know it's the source of all these psychological problems I'm dealing with, but I can not do anything with it until I know what it is exactly.

This is the reason why I'm often working on my autobiography as it helps me to remember things, and why I am pushing for this final surgery as ending that medical chapter of my life should also dislodge a lot of suppressed memories and feelings. Yet the former is also very tough on me and this last surgery isn't coming any closer. The surgeon is currently too busy to answer the questions I sent him weeks ago and it is becoming increasingly less likely that I'll have surgery this year. This also means that my autobiography will end on a negative note if it will be published this year. Still the same uncertainty and fears, with the completing of my body still unattainable.

I'm just terrified of what is lurking in my past, but I know I need to confront it, something which is impossible without dealing with the medical issue first. It seems I'm deadlocked again at this point. Very unlucky...


Maya

Sunday 2 March 2014

Unexpected Hospital Visit

I just returned from the hospital as I'm typing this. The reason for this sudden hospital visit was me collapsing a few hours ago as I was leaving the hackerspace. As I was making my way down the stairs I began to feel very emotional, with me having to seek support by leaning against the wall and sitting down on a step of the stairs. I found myself crying as well as making unintelligible sounds. I kind of knew what was coming next, and I wasn't disappointed. Before I knew it I was lying on the stairs, staring at the part of it which was right in front of me.

I could hear the others talking upstairs, then after a while people coming downstairs. I remember feeling so embarrassed and ashamed that they would find me lying like this. Helpless and foolish. Before I knew it so many people were standing around me and tugging at me. Someone was holding my hand and telling me it would be fine. I tried to answer their questions as well as I could by faintly shaking my head or nodding. All I could utter were faint sounds. The logical course of action for a bystander in such a situation is to call emergency services. At least I think it was clear to those with me that I hadn't fallen but 'merely' suffered a psychological/psychosomatic event.

I recall seeing this police woman talking to me but no details, as though it was all a far-away dream. Then EMS personnel who tugged on me, telling me to stand up, but only getting me to collapse as I had no control over or strength in my legs. They were yelling at me and I didn't understand it, but got scared. As they lifted me up with hands grabbing me everywhere I felt like I was being arrested again like those years ago. Then I was put on a stretcher. I remember seeing the familiar surroundings pass by from this weird perspective. Then I was in the ambulance. There was some commotion from the others. I guess they wanted to come with me.

In the ambulance I got questioned about some kind of identification and got even more scared. Then the police woman found my wallet in my shoulder bag and apologized. More questions. All of it a blur. At some point I began to regain my senses and control over my muscles. After that I was gradually able to speak again. I noticed that the police woman was gone and we were driving. I was able to inform the EMS guy sitting next to me about what had happened. Then we arrived at the hospital. Just for a check-up by a doctor.

The doctor was pleasant enough as I tried to put together my story in an understandable manner. How to compress a decade worth of experiences and the implications of being born with a rare physical condition into a few paragraphs worth of text. Also to explain how my PTSD was formed and that it together with the stress I'm under due to the whole migration thing probably triggered this incident. He seemed to understand though, and just did a few simple tests and had a sample of my blood tested for the usual parameters.

The results of the blood test showed no weird results and also confirmed that I had not been drinking any alcohol. After this I was free to go, just before 3 AM. This left me to find public transport back to the hackerspace where I could pick up my bicycle and ride back home. During this a couple of guys made lewd remarks at me, presumably while intoxicated. No guy in his right mind would make kissing sounds at a random girl on the street or call one a 'la chicka' out of nowhere. Weird indeed.

Adding some irony to this whole situation is that this afternoon I hooked up my new stove/oven combo to the available 3-phase connection and managed to not electrocute myself. After verifying that it worked as it should I congratulated myself on a job well done. While at the hackerspace I made a point out of mentioning this accomplishment to others, joking about not having put myself into the hospital. Little did I know.

The EMS guy in the ambulance asked me whether I had any indication beforehand that I would collapse like this. To this I could only reply that it was almost impossible to predict. I always start feeling emotionally numb before it happens, but I don't collapse every time I feel emotionally numb. I do suspect that in the cases where I feel numb but no collapse occurs I am storing up the emotional stress until enough has built up to make such a collapse possible. I wasn't feeling very happy by the time I left the hackerspace. My current situation is highly stressful in addition to the many worries about my immediate and long-term future, especially medically.

I really hope that solutions can be found for the sources of my stress, help with my PTSD and a quick resolution of the medical uncertainties, specifically the surgery and the exact workings of my periods.

It's 4.30 AM now. I really should try and get some sleep... goodnight.


Maya