Neil's Story

[Received Aug 2002]

Hi,

In response to your email:-

Nancy [partner] has said that she would talk to any parent with AIS children. As to helping out more, I'm sure that you will appreciate how time consuming small children can be. It does not surprise me, and shouldn't you, that many parents aren't involved [in the group]. I'm informed repeatedly by your group that parents feel guilt and responsibility for the way their children are. Either they are going to throw themselves into the group to expunge their guilt, or withdraw. The majority, I would guess, would do the later. In addition, older parents may well feel difficulty in discussing sexual matters in front of others, especially their children. The up and coming generations will feel this less, I appreciate, but it could well be a factor. And yes, I know that your [adult women] members have come forward and talked, but that springs from many causes. Desperation, and the need to fit in somewhere, being only two.

Nancy and I do not go [to meetings] as often as we should, mainly because of me. She does not drive, and thus finds it difficult. I dislike it [meetings], as I look after our youngest, and do not really benefit from the [clinician's] talks (which I would find interesting), or from the parents (who, due to my own weakness, I frankly find irritating concerning their guilt feelings). I do not feel guilty about having a healthy child. Also I'm something of a misanthrope; all be it a potentially philanthropic one! I do not particularly enjoy social gatherings. I could go into many reasons why people don't come forward [to get more involved], but yes, they are all excuses.

And to be honest, doctors and parents shouldn't look for some panacea for telling children who they are. Just bloody well get on and do it. Each person must find the way best suited for them. It's not easy, but it will be a damn sight harder and destructive if they're not told. Hang on to that thought; get them to steel themselves and do it. The moments always present themselves, so be ready for it. Put it simply and appropriately for the child. The parents' feelings are unimportant. If you do your best, what ever that is, that is the correct way. There is no right or wrong way, no guilt or blame, no matter what happens in the future, only do your best.

There, that's better. Sorry about the diatribe. (I also get a little aggressive sometimes!) Nancy does not agree with all of this. She's just reading it over my shoulder, as Xenia [5-6 year-old AIS daughter] tries to get attention!

And now…….

I wrote some stuff as a parent some time ago, but I've never done anything about it for fear of causing offense to some of your members. I felt my views would not be appreciated and may sound aggressive, and indeed could be counter productive.

I am a parent of a CAIS child.

As way of background information on myself, for the first 7 years of my life I underwent regular surgery for a condition I did not have. Only going up to Great Ormond Street did my condition get correctly diagnosed. It wasn't a big deal. It was sorted with 2 final operations. However this has left a lasting impression of the medical establishment on me. I know people can make mistakes. I know medicine is evolving and not perfect. I am aware that "science" is as much a belief system as any other. (I am happy to debate the point, but this is not the place or time for it) I know my views are not usually accepted. It may be that a chip has developed on my shoulder, and a slight cynicism has crept in, over the years. Be that as it may, my views are what they are.

In respect to Xenia's birth, AIS was suspected; one of her siblings being CAIS; and placental blood was taken to confirm the possible diagnosis. From my point of view, I found the paediatrician's attitude crude and brutal; lacking in compassion, comprehension, and consideration. Indeed, so strong did I feel concerning his rough handling of my child, I felt a strong desire to hit the bastard. No doubt we were both tired. I had been told that the birth of a child was a magnificent and wonderful thing. Many men I spoke to view it as the emotional high point of their life, and waxed lyrical over it. Frankly, I found it slightly unpleasant, and very messy; the over riding emotion being one of distaste. The resultant child was an ugly red screaming object, and it took quite some time to become attached to it. I am really quite fond of her. I am in no way upset, traumatised, displeased, or shocked about the gender of my child. I do not consider my reactions to be dis-similar to many men's, at the birth of a child. Xenia has many qualities that I admire, and respect, and is growing into a healthy and bright, although talkative, child. Any negative attributes she may develop due to her AIS will come from society, not this family. Some will undoubtedly develop, irrespective of her gender, due the type of people her parents are.

Anyway you want parents' views, so here is a parent's view. The first part is what I wrote some time ago, roughly 3 years. I will then add a few more comments. I would be more than happy to discuss this, but I feel that I may not be a sympathetic enough person, but …….

So here is the first bit attached as AIS1. Use it or abuse it as you see fit.

AIS1

First of all, why am I writing this, what are my credentials? I am not a doctor and I have no academic qualifications in this field. But I have a child. My child is happy and very beautiful, and gives me great happiness and great pain. My child is a normal everyday child. My child happens to be an AIS child. My child has no illness, functions well, and is quick and bright; too quick and bright sometimes!

I have given my child the name of Xenia. This is a girl's name. But is she a girl, or is she a boy, or is she a ……..? Is she neither, or is she both? Or is she something else, an AIS for instance. I have to use the terms male, female, he, she, for there is no designation other than "it" in my language, and "it" seems a little derogatory. And here we have a fundamental problem. I have a healthy child and no language to describe her/him.

"What a lovely child. Is it a boy?" This is a common question. But why do they ask me this and why is it necessary to know the gender? I think it is a mix of curiosity, politeness and social conditioning. "……a boy?" It is also quite often because she is dressed in blue, and wears trousers and shirts. Well she is dressed in blue as it is a pleasant colour, and in trousers and shirt as they are practical and warm. Perhaps some may read a deeper psychological reason into this, but I believe the reason is as simple as that.

What I'm coming to is this. What makes us ascribe one of only two sexes to children, and, indeed, why do we only recognise two when there are obviously more? And I can say "......when there are obviously more?" only because I know that this is so, as I have an AIS child. And secondly, if there are only two sexes, what can I do to heal my sick child, for if it is so, all people with AIS and other intersex 'conditions' must be "healed", and brought into line with the norm.

I had not thought much about gender before. I had been too ready to accept the dictates of my society, but when I do think about it now, I wonder.

AIS and other intersex conditions have existed for a long time. We didn't know about them, as in the past sexual matters of all kinds have been kept behind locked doors; something for the dark to hide. It is only recently that such things can be discussed openly in our society. Secrecy has been the key word, even secrecy from the intersex person and their parents. It is easy to point the finger of blame for this at one section of society or another. But we must surely know that each and everyone of us is really responsible. It is all of us, after all, that makes up society. But it is also society that makes us. The two are intertwined and inextricably related. For one or other to change, a courageous leap into the abyss must be made. And which of us has such courage?

I can't talk about other intersex people, as I know next to nothing about them. But I gather that AIS is, as the name suggests, an insensitivity to the male hormone, coupled with a suppression of those hormones that promote femininity, i.e. development of ovaries and womb. This can happen as a result of a spontaneous mutation or through an hereditary mutation. It seems to me that mutation is the key word here, and I would guess that other intersex conditions occur similarly. But mutation… Surely we are all the result of mutation It is by this process that man has developed to be that which he is now. And isn't mutation a continuous process? Is it not desirable? We after all have mutated plants and animals to become what we desire. We like mutation, but perhaps only when we are in charge. Mutation is not an illness. It is the natural state of things in all creation. Having said that, not all mutations are good or beneficial. They may pose a threat either to themselves or to society at large. But here we are struck by another issue. Should we stop evolution for man in its tracks, and say we are perfect, or allow ourselves to grow and change. It could be argued that interventive surgery, in gender assignment, is a form of cosmetic eugenics.

Does AIS pose a threat to society or to the people themselves? Those who have AIS have gonads which are testicular, sometimes in the position of ovaries, sometimes in the groin. They may or may not have a vagina. They are unlikely to have a womb or Fallopian tubes. Because of this will they die, or will their life be diminished?

Based on a study of undescended testicles in males, there is an argument that instances of testicular cancer could be high. Whilst many accept the findings and see them as applicable to those with AIS, a study of the paper certainly leaves scope for debate. If this argument is accepted, then it is possible to operate and to consider AIS as an "illness". However the exact number of people with AIS is not known, although there are studies in some countries that give an indication, and there are some who have not realised that they are AIS until later in life, and some who, knowing, have retained their testes and not developed cancer. The paper in question also clearly indicates that those boys who either had a biopsy or surgery on their testes developed cancer later in life, whereas those who had 'manipulation' to help descend their testicles rarely developed cancer. Basically the paper suggested that surgical intervention was a more significant factor that abdominal testicles in the development of cancer in later life. But the findings, however interpreted, must be viewed with a degree of circumspection, as they relate to XY males and not XY 'females'. I believe therefore that AIS does not per se threaten the life of those who are such. As regards a threat to society at large, this is true only in as much as fear and prejudice pose a threat. In respect of diminishing peoples lives, well, there may be a case for that.

It appears that many of the concerns, after that of cancer, are to do with experiencing a full sexual life. By this it seems to me to mean penetrative sex or the ability to have it. To experience a full sexual life it is suggested that a vagina is necessary. Male homosexuals experience fulfillment. Some women with vaginas do not experience fulfillment. Could it be that a vagina is not absolutely necessary for sexual enjoyment? Surely that comes from the flesh and mind in unison, certainly for the best sex. There are as many ways to enjoy a physical sexual life as the mind and imagination can devise. Of course as a man I can not know what it is like to be a woman and to experience vaginal penetrative sex both physically and psychologically. But I do know that orgasm is not necessary for full enjoyment. Undoubtedly there will be and are those who desire and need full penetrative vaginal sex, and for those there are techniques and procedures to create a vagina. But there are men who desiring to be women have had surgical techniques performed in order to achieved a similar end result. My view that AIS diminishes lives in a sexual sphere is that it does not, but if it does only in the same way that it does for males or females.

The recognition of unusual situations should allow us the opportunity of looking at things afresh. At this stage in my thoughts, which may change, I believe that AIS is not an illness; not a deformity; and does not require treatment. Such people are healthy and normal unto themselves. They are not male, or female, but inters.

But there is a problem. And that is you and me and society as a whole. Society does not accept more than two genders. It still expects sexual activity and sexuality to be conducted along specific lines. In recent times homosexuality has become more acceptable. Sure the individuals most important task is to educate society, and sadly especially ourselves, to accept the multiplicity of genders, and the shades of masculinity and femininity. This would be more helpful and constructive and lead to a better and less painful life. Acceptance, realisation in parents that they are not blame, and closer open relationships without such guilt feelings or of being a freak, can only lead to a more fulfilled less painful life.

There appears be a problem of coming to terms on the one hand with being intersexual, and on the other of wishing to be female or male. I hope that this apparent contradiction will be avoided with sensitive upbringing and education, so that a balanced view of who intersexuals are can be achieved. Some may opt for surgery to become different, others not. The avoidance of parental and social stereotyping is crucial, and in the current society difficult to achieve. Puberty and peer pressure could present difficulties, and may well be painful. I hate the thought of my child suffering shame or ridicule, and I cry for her at the thought. But secrecy and disinformation will be a thousand times more destructive. We must all do our best under such situations, for we can do no more.

I feel sure that to many with AIS, all this is of no real help, as they have an immediate problem. The problem of who/what they are and their place in society. But to pretend to be female or male or whatever, when they are not, seems to deny their very nature. Sure there will be times to say "I am a woman". I tell people who ask in the street that Xenia is a girl, as to explain would take too long. To every one I know, whether at work or socially, I say she is an inter, and try to explain what AIS is. I am proud of her. She's my AIS child, and I think that's good. Calling her a girl and pretending she is one won't make her one. I don't want pain and confusion for her.

I don't deny or belittle the pain and difficulty that people feel of being separate, odd, an outsider, and the need to feel normal and accepted; to have a positive view of yourself and confidence in what and who you are. This is crucial. For her being brought up in the knowledge of what she is, as society brings up other children in the knowledge of what they are, I hope will make life easier for her. For those who find out their true gender and sexual leanings later in life, the knowledge can come as a shattering shock. Great courage is needed. I have seen such courage in the support group.

AIS2

It's some years since I wrote AIS1 but I still hold to it. Xenia is now 5 going on 6

Nancy has told Xenia she is AIS, and separately I have told her she is an inter, explaining that some people are male, like Billy next door, some are female like Mumma, some are inter like Ilizane, her sister. This family is lucky in that there are inters in it of differing generations, which act as role models.

At the moment Xenia doesn't want to be an inter. She wants to be a princess, or a fairy, and a girl. She has been told she and her middle sister (Ilizane) won't have babies, but her big sister can because she is a female, like mummy. Most of the time it makes no difference to her. I'm pleased that one of her friends is a little boy who likes girls' things as well as boys'.

I've also tried to shew her that there are all different types of inters. Some like more boy things, and some more girl things. Again in the family there are models to follow. It's all right to like what you like and to be what you are, and people differ.

I am strongly of the view that intersexual problems are as a result of society by and large, and not something that needs treatment. Sex education is absolutely crucial in solving many social problems, whether homosexuality, intersexuality, or male/female 'rivalry'/relations. I have spoken to two schools about it, and complained to the local council concerning gender questions on their forms, irrespective as to whom they are addressed. The reply is that there is nothing that can be done. Governmental directives, protest, or violence, seem to be the only way of having any affect.

CAIS, which our children have, is not a surgical problem, and I believe neither is PAIS, but one of acceptance. Acceptance of what we are as individuals. Acceptance of others for what they are.

These are my personal views, and not necessarily Nancy's, Xenia's or any one else's.