For the last few years I have written a piece for AIC reflecting on my birthday and I want to do the same this year. It’s hard to know where to start. I come to this birthday with a heavy heart as my long-time colleague and fellow intersex activist Sally Gross will not join me this year. Sally and I shared the same birth year, and last year Sally died at home alone in South Africa. She had struggled for a number of years with serious physical health issues. I did not know, still do not, the details of Sally’s medical difficulties.  What I do know is she, like many of us, had trouble finding doctors who would look outside the binary paradigm and see her for who she uniquely was and who would seek to understand what  she needed to stay well.

I don’t think Sally had to die so young. I don’t think she had to live the last few years of her life with as much worry, pain and struggle as she did. I hope Sally, your death was not in vain, and that the things you so bravely talked about and worked towards do come to pass in the not too distant future.  My hope is for the recognition of intersex human rights and the celebration of children born with intersex traits.

I have thought so much over the last year about this ‘reality’ most of us intersex people carry. When I first started my intersex activism (over 20 years ago) the doctors and surgeons we met with told us quite condescendingly that we had ‘bad’ surgery, that they did things ‘better’ now, and that really we were a tiny protesting minority and that ‘most’ people were happy with what had been done to them as children.  We know this not to be true.

2014 also brought me back to America, to be a support person for the world’s first ever residential retreat for intersex youth. Many of the young people at that retreat were not even born when I was first talking to doctors over 20 years ago. But over the course of the retreat I heard stories…. lots of stories about treatment, about discrimination and about unethical behavior from medical professionals. I did not hear one overall ‘good’ story, but I did hear about supportive parents, amazing friends, and  some individual supportive caring physicians.. But the dominant narrative was one of an on-going trauma, of not being heard, not being seen, and not being taken seriously.

I then went on to attend the world’s largest annual gathering for intersex adults, youth and the families who love them… and the story repeated.  I heard current here and now stories, as well as historic traumatic stories.  I saw more pain and tears in those few days than I had for the last decade.

I came away from that trip deeply impacted.

I am keenly aware as a member of the first ‘generation’ to break the code of silence and speak out and that our voices helped bring visibility to the issue, and  real communities of care and support have grown around the world. However we have failed to change the medical model in any real significant way.  The model carries on unintentionally causing on-going pain/trauma map all over the world.

And before I end this annual birthday reflection, I want to talk about another significant ‘event’ in my life last year… In March an arsonist set fire to the large building where I had stored most of my personal treasures. Not my day to day things, but important things, that could not fit in the tiny flat I currently live in. The fire was huge and demolished the top floor of the building, destroying over 300 units.

Days later when I first saw the carnage  I was horrified.  In that building was ALL my original, irreplaceable medical records that I had recovered on my intersex history. Record of my very private story and journey of healing undertaken some 25 years ago in my storage unit. Journals, paintings the books that helped me make meaning out of my horrific narrative, because along with the “stuff’ doctors did, surgery, examinations the strangling cloak of shame and silence, I also was a sexual abuse victim. Easy target, a young child, afraid of my body, sworn to perpetual silence, no way of knowing that what the doctors did was acceptable and what the perpetrators did was not. (It is odd there was no difference to me as a child) All THAT history was also in my storage unit.

So as I stood looking at the wreckage that was left behind I did not yet know what happened to all my very private history. It would take another week before I would learn that most of it had not actually been burned in the fire, instead it was dragged out of the unit in the demolition, and dispersed, some into a stair well, some over the side of the building, gone forever. (I recovered about 1% of it.)

I slipped into full blown PTSD for a couple of days.  A place I had not been for several decades. As a therapist, one of my specialty areas is trauma, so I knew exactly what was happening, and got myself help to get out of that place.

Then I sat back and tried to make sense of what had happened? As a child I was taught to keep my body, my difference SECRET. I was not allowed to talk about, or show people (although that part was confusing because there were always people who wanted to look, at my ‘different’ genitals. The fire and my loss of control over all that material reactivated, my historical shame, my fear of being found out, of the family secret becoming public.

Here I was a 60 plus person back in this place, struggling to make sense, to deal with what was going on. This trauma legacy is a complicated one. It is not JUST the damaged tissue (from the normalizing surgery) as horrific as that is. It is everything else that goes with the narrative, that you’re not okay, that your body is not okay, that it needs to be hidden and kept a secret.

I would not want ANYONE to go through what I did last year.  However it has given me new energy and new purpose to carry on this work of change. The paradigm is so damaging. Both what happened in the past and the so called ‘better’ model that exists now.

We need a model that values difference, that focuses on HEALTH, support for parents, and bodily integrity.  A model that recognizes that intersex people are perfect just the way they are, that we are spread all across the gender and sexual orientation map. A model that teaches those who care for us (whatever our age) to LISTEN exquisitely, and to not judge.  To be willing to walk with us so that ALL of us can find optimum health, with our atypical bodies.

It is through organizations like AIC that we will, and are, effecting real change. The work is hard (all of us on the front line will tell you that). It requires substance people like you who reach out, and support us either in kind or with your generous cash donations – that’s what keeps us going.

If you are considering making a gift, know it will make a difference and in anticipation I thank you from a place deep inside my heart.

~Mani Bruce Mitchell (NZ) AIC board member