I feel for parents. I sometimes lie awake at night agonising over the suffering they accept on behalf of their children. I wonder at the strength it must take to try to guide a child through unknown territory, avoid as many of the bumps and scrapes as possible along the way, and suffer those accidents of life that cannot be avoided. My own parents are no exception to this.
I was truly the child my parents brought into this world for the first six or so years of my life, a daughter that my mother (and I hope somewhere watching over me, my late father) now understands was later lost to medicine for many years. Unaware of that which was to come our family unit carried on, my parents trusting their own love of their children and their faith in the medical profession to deal with any of the obstacles life placed on our family path. I was born with an intersex condition called Androgen Insensitivity Syndrome, AIS. It doesn't sound like much when you say it like that, just a little medical condition. Mostly when I read it written about me now, see it in my medical records, or think about what it means to me, I feel indifferent. Mostly. Like any other condition it has the odd down-side, but on the whole has not really caused me many problems. I have not suffered because of my birthright, which is really how I now feel about having an intersex condition. I have suffered because of well intentioned intervention along the way that was meant to shape me into a person that someone else wanted me to be, that someone else believed I should be, that someone else thought was best for me. I was prodded and poked, examined and cut. I was photographed. I was a six year old child. The medical profession had decided somewhere along the way that I was a boy and now they were sure my parents and I would believe it. They made sure. I would never accuse the medical profession of intending anything other than what was best for me and I am sure that the last thing on their minds was to hurt me or anyone else in our little family, but they never thought to ask the six year old child they sought to protect, what she really wanted. My parents, like so many others of their generation, trusted the medical profession to do what was right for their child and because all the answers were provided, they never questioned what they were told because they were never allowed any doubt. Like me, my parents had now been drawn into a deception that would self-perpetuate for the next 24 years.
I once said to someone that as a child I felt that what was happening at that time was wrong, I later realised that this is not entirely accurate. The best description of this part of my life was that I felt uncomfortable, the sort of innate feeling that animals and people, especially children, have when they know that some harm is being done to them but do not yet understand what that harm may be.
Much of the feeling of apprehension I felt about what was happening to me as a child, I now know was because of the way in which things were done. There are walls in my dreams sometimes, white walls with squares and scales marked on them. In my dreams they are always empty, cold places, the sort of place that I suppose represents the way I felt about the experience. In reality though these rooms always had people in them, doctors, someone to take photographs, sometimes a nurse to help the poor child take their clothes off and place them on the chair, always on a chair. Sorry dear you have to take all of your clothes off. For all those people allowed in to view the show and tell, my parents were never there. I only recently found out that my parents didn't even realise this was going on, never consented to their child being used as a training aid for future generations of medical professionals. This is the one thing that I don't know if I will ever be able to forgive the medical profession for doing. In some small way that I never even realised, for a long time they made me feel as though my parents had somehow abandoned me, if even briefly, and left me alone with my shame and guilt. I hate that I was made to feel that way about parents who never did anything but love me unconditionally. A good friend of mine with AIS sent me a photograph of her as a child, that had appeared in a medical journal. She sent it to me for no other reason than because she thought I might find it interesting. The same walls again. I was devastated. She did not, of course, know of the way I felt about my own experiences with this type of photography. I recently read of another person with an intersex condition describing her experience of finding photos of others like us and described the photos as "like insects tacked to a board for study". There is hope though. The young mother of a child with AIS told me of her seizing from the hospital the negatives of photographs taken of her child without her permission. What she has done is something that I, many others like me and one day her own child, will thank her for. It is parents like her that are slowly taking back the lives of their intersex children and giving hope to those of us that want this to stop.
Life goes on. As I grew older the feeling that things were not quite right, grew inside me. Like most children, there was always something to be done, some game to play, books to read. I began to understand that the games boys and girls played were sometimes different, that boys and girls were somehow different. I liked to play some of the boys games, but I didn't think I was like them. Children sense difference and by the time I was about nine years old, I knew I was very different but still didn't completely understand why. We moved to a small property in the hills surrounding the city where I grew up. Then came the conversation with my mother that led to me understanding much of the feeling of being different as well as silencing me for over twenty years. Family friends were visiting for the first time since we moved to our new house. They have three daughters, the eldest daughter close to my age. I knew I was like this person and when I asked if the two girls and the boy were coming to visit, was told they were all girls. The person like me was a girl, that meant I was a girl too. Like all children, I realised the impact it would have on my family to tell them I realised who I really was, so I said nothing and began to be afraid. I became frightened of everything I said and did, terrified that someone would see the girl so carefully hidden away by the medical profession and now me. I was firmly set on the path to self-perpetuate another hidden intersex child, more secrets, more lies, a child that now felt frightened and vulnerable.
I realised more and more that the people I identified with most were "tomboys". I loved that they could mix it with the boys, but then sit and discuss their feelings in a way I couldn't imagine many boys doing. I began to realise more and more that I was a tomboy pretending to be a boy. Although I was teased a lot at school, feeling like a tomboy probably saved me. Had I felt like many of the other girls at school, I would have been cut down mercilessly. I had friends who were tomboys, who somehow realised I was different or like them and accepted me. I had other friends who were seen by others in school as "different" too. We had our own little group, we helped each other survive.
My father died in 1980. More secrets. He kept from us the fact he was sick, had lung cancer, until it was too late. He only lived for a matter of months after the night my mother, in tears, in the family car in our driveway, told me that doctors thought he had lung cancer. I could feel his desperation during those months, spending as much time as he could physically manage with his beloved children and wife. He stayed at home until he died and I longed to look after him the way my mother did, but, fearful of expressing the way I felt and being discovered, I kept up the lie. I lost something I can never replace in doing so. I am not sure to this day why I believe this, but somewhere deep in my father's eyes I sometimes thought I could see him looking at the little girl that once was, hoping she would somehow have the courage to fight back. I am sorry I didn't have the courage then to tell him and that it would all be okay. He slowly slipped away from us, but his love has always remained.
I went on to study engineering and worked in a male dominated government field of employment. I survived, my secret intact for yet another round of life, but I was beginning to loose perspective. The sleeping dragon inside me grew stronger and stronger. I changed jobs. Perhaps a fresh perspective in my employment would make all those thoughts and feelings go away. It didn't, they didn't. About the time of my thirtieth birthday, the dragon would soon be strong enough to escape and destroy me and everything in it's path. I knew I needed to let it out before it got any stronger. What I didn't realise was that someone would open the gate and release the dragon for me, someone who gave me the strength to meet and talk with others like me, someone who accepted me the way I was, but encouraged me to be the person I should have been all along. She was my partner, but more than that my inspiration and strength. She literally saved my life, because at that point in time I was ready to end it. I know when she reads this she will know who I am speaking of.
One of the specialists I started seeing suggested I get copies of my own medical records for my own peace of mind. I obtained my medical records and one by one illusions and beliefs were shattered, falling away, destroyed by their transparency. I found an address for the AIS support group, Australia. I wrote and someone spoke to me, a real person just like me who reached out and accepted me into my other family. These were people who had suffered as I had, others who had felt the same fear, isolation and later acceptance, by others who understood. I went to my first support group meeting and for the first time in my life lived amongst others just like me, talked to them, cried with them and cared deeply for them all. I also met a child just like me and I realised in that moment that I could not allow the same injustices to be suffered by this child, any child with an intersex condition, as had been suffered by me. I spoke with the parents of this child and felt deeply for them. I started to write and talk to the medical profession in the hope that things would change, that they would listen to me and recognise the experience of my suffering. I found Milton Diamond and his selfless battle to help so many of us and, sadly, that there were many others who had suffered as I had. Sadly, I also found that many in the medical profession were not interested in listening.
I am a child again. Realistically I am only about six years old at the time of writing this, back where I started before things were changed for me. But things are different now for this little girl. I have talked much to my mother, she is happy that she has the daughter back the medical profession took from her. She has told me of the things that, with hindsight, she now realises were signs her daughter was trapped, just beyond her reach. Somehow though, her love for me has always managed to get through to the person it was really meant for, when it was really needed. I have a brother and a sister and aunts, cousins and second cousins, all of whom are very special to me and accept and love me for who I am. My friends, equally, are all very special to me. They are there every day to listen to me, support me, guide me and love me.
In all I have been through though, I realise I have been given a special gift. As crazy as it sounds, I would not give up my experiences, would never wish that I was not intersex. Because of my experiences, the bond I have with others like me is incredibly strong. Knowing how a child with an intersex condition will feel in certain situations is something I am thankful for every day.
I have some advice too. For parents of children with intersex conditions: talk to your child, listen to your child. Your child has the same emotions and feelings as you, just not the experience to deal with their feelings. Talk to adults who have lived with intersex conditions, we will always help. For those parents reading this having only just been told of your child's condition, talk to your child too. Try not to let your own fears for your child become a barrier between you. To all parents be proud of what your child will achieve with your help.
As for the medical profession, well, some of you have a long way to go. To all of you, listen to us, learn from us, recognise us for the experts of our own experience that we are. To those that have listened and continue to listen, I thank you. To those of you yet to recognise the importance of our experiences, please do not lie to us or our parents or ask parents to become partners in deceptions that should never be. Let us realise our own potential and let us be free to make our own choices. Recognise that mistakes have been made and do what you can to help undo them.
For those that are reading this simply because you are interested in learning of the experiences of the intersex community, wonder what it must be like to have one of these conditions, or what it would be like to be the parent of a child with an intersex condition, thank-you. The more like you that break through the barrier of secrecy that hid us from society for so long, the better for all of society.
As a final word. I have met a very special person with AIS. He, yes contrary to some popularly held beliefs there are AIS males, is someone I love dearly. I recently stood with him at the site where my father's ashes are now buried wondering at the journeys we have all taken to get where we are now and the steps still to be taken in some of those journeys. I am sure my father would have loved this special person that now helps look after his daughter. I cannot find the words to thank this special person myself, instead I find myself in tears for all we have been through, that we have yet to suffer, but most importantly hope for the future of all intersex people.
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Last update: 22 January, 2014
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