I can still vividly remember attending the first international conference on intersex “From Gene to Gender” in Lubeck, Germany, nearly ten years ago, and how a medical scientist contemptuously spat the word ‘activist’ out at the audience. Yet, I wondered, why did this man hold in such contempt the people whose medical conditions he was supposed to be working on.
Most intersex people have never received an apology for some of the things that have happened to them, things that shouldn’t have happened in the way that they did.When I was in hospital after my accident ten years ago, it brought back memories of my time in hospital as a child, which was where my trust in the medical profession started to break down. I talked to the ward sister, and she explained to me how things had changed. Then, parents were restricted to short hourly visits in the evening, even getting an injection could be a traumatising affair, as children would be held down and told to be quiet. I still remember being thrown into a scalding hot bath by a ward sister who seemed to regard me with contempt, and nearly drowning, after more than a week being confined to bed without being allowed to get up. Today, children are treated very differently, in general. She apologised for the way I had been treated as a child. She didn’t need to, but she wanted me to know that it was not like that any more, and that the way is was had not been right. It was abusive. That helped me to start to trust what her colleagues were doing to save my leg.
It is too easy to have a go at some activist because of their anger, to make out ‘they’ are a problem, and in so doing dismiss their concerns.
Of the two specialists I have spoken with about my own history, one in the UK and one in NZ, both reckoned what happened as a child would have made things worse, although not acknowledging they were mistakes. The one in the UK did not even seem to think of offering an apology.
There needs to be an acknowledgement that mistakes were made, not just in premature interventions in early childhood, using Progesterone and DES, arbitrary assignments, etc., but also, there need to be some apologies for the way people were treated, and harmed, however unintentional the damage. That has never been forthcoming to my knowledge, and yet of all the things the medical profession could do, saying sorry (without prejudice) would be one of the easiest and most healing things that could be achieved without any cost.
That is the only way some people will be able to move towards reconciliation. It requires an acknowledged acceptance of what happened, taking responsibility, apologising, and releasing people from blame, and moving on to re-establish trust.
For some, their anger, despair, trauma etc. has found expression in ways that make some academics and medical professionals uncomfortable. The anger of some has been dismissed in a way that ignores the responsibility of the medical profession in putting people in a situation where they grow up damaged in a way that can be hard to find inner peace and healing. People are blamed for their own frustration and traumatised responses, by those whose job it is to heal, and whose predecessors rendered the lives of those affected so difficult.
So, it is time people took responsibility for what happened, and apologised, recognising that those who were affected may have been harmed in ways that mean they are still hurt and angry because of what happened. This needs to happen before those people who were affected and who are still hurting can start move forward and start to build trust in this part of the medical profession.
Ignoring them, brushing them under the carpet, excluding them, misrepresenting them, denying the reality of their experiences, further marginalising them, are not effective approaches, and will not bring about such a reconciliation.
Mish
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