I never wanted to become an activist, all I ever wanted was to reach out and support people that had similar experiences as mine, people that felt isolated and needed someone who understood what they were going through. This led me to joining NGOs that claimed to support intersex people, I don’t remember many intersex people being supported but in the end I was caught up with policy meetings, legislation consultations, movement politics and eventually we all forgot about the people we were trying to serve. I had to leave and here I am constantly dealing with the guilt of “leaving the movement”.
Like anywhere else in the world being an intersex person in South Africa is not easy, there are still problems with accessing appropriate health care and with stigma. I was raised in the rural areas of the North West province by parents that were wise enough to refuse any surgical interventions on me. I grew up as a healthy child whose only problem was the secrecy surrounding my intersex status. When I was 19, I started having pains in my abdominal region, my family took me to a doctor who referred to me as “it” and said that they had made a mistake by raising me as a girl and he quickly advised surgery, I could not go through with it if it meant “becoming a boy”. We had to find a doctor that was more knowledgeable on intersex healthcare, we spent two years searching for a doctor in the North West province that could assist me and my search did not yield any results. I contacted an NGO and they referred me to a doctor at Chris Hani Baragwaneth Hospital in Soweto, 250 kilometres from where I lived. Once every month I would have to travel to Soweto for “healthcare”.
That was the one of the worst experiences of my life, I would have to undress and the doctor would bring his medical students into the room to give them a lecture on “disorders of sexual development”, with me as the exhibition. I stopped seeing this doctor, I used painkillers to cope with the pain and only had the courage to see another doctor only 6 years after that experience. I later realised that this is a typical experience for most intersex persons in the country, you either had surgery as a child and had to deal with the consequences by yourself for the rest of your life or if you were lucky enough to escape surgery as a child, you had to deal with the difficulty of accessing healthcare as an adult.
Access to healthcare is still difficult for the average South African, access to healthcare for an intersex person is even worse, there are only a few hospitals in the country that can cater for the needs of intersex persons with care and understanding.
My work as an activist also involves a lot of media visibility, and it is not easy being visible. The first time I appeared in a national magazine, I had to spend an entire month avoiding calls or being alone in public. The hate mail was tremendous and people were more curious about my genitals than the issues I was trying to raise. In time I became used to the public sneers and the curiosity over my gender. I soon realised the social stigma that surrounded being intersex, I knew the secrecy we were all raised under but I did not expect that speaking out would involve isolation and literal threat to my life at times. Stories of intersex primary school children being undressed in front of their class mates by their teachers suddenly did not become shocking, they became a reality of being intersex and living in the townships. For these reasons I decided to stay as an activist and know other activists such as Sally, if not for mentoring at least for support.
Sally Gross was a wonderful person, she dedicated much of her life to advising and mentoring other intersex activists such as myself, I am forever grateful for the impact she had and continues to have on my activism and life. Sally and I spent much of our time together in 2013 talking about her health issues. Whenever we spoke on Facebook or Skype, she would tell me about her ailing health and sometimes she would tell me about her financial situation, how she could not afford healthcare and how she worried about paying for the most basic of things such as her groceries. Eventually, I saw that Sally’s health was deteriorating and I knew that her organisation was struggling with funding, basically surviving month to month from project funding. Mani Mitchell and I decided to reach out to Sally and asked for her permission to start an online fundraising campaign in her name, since she was struggling to pay her medical bills and her rent. On February 2014, while the campaign to raise funds for Sally was also struggling, I received news that she had passed away in her apartment in Cape Town, alone. There were even rumours that her body might have been discovered a few days after she had passed away. The experience of Sally’s struggle before her death shaped my view of the intersex movement in South Africa.
It is difficult to view intersex activism in South Africa outside of the “NGO industrial complex”. Much of the work that is done in advocating for the rights of intersex persons is done by NGOs and relies heavily on international donors, unfortunately funding for intersex related work does not come easy. If you manage to get a grant it will most likely be a project grant and not necessarily grants to support salaries or the institutional costs of running an NGO. Most intersex related work or funding is bound together with trans* advocacy or LGBT advocacy in general. Has the inclusion of intersex into LGBT politics been effective for our movement? Well that is another argument for another day.
What was frustrating, and continues to be frustrating, is that activists like Sally Gross are expected to run NGOs with little to no money at all. It is a huge sacrifice to leave normal paying jobs in the pursuit of making a difference through the NGO sector. We are expected to stick to work plans, run and report on projects, travel to conferences, contribute to policies, while in reality we cannot even pay our rent or pay for healthcare, at the same time we are told to “take better care of ourselves” to ensure that “self-care” is part of our work, how do you take care of yourself when you can’t even afford groceries? People see you travelling the world to conferences (sponsored by donors) and think that you are living well; in reality you sleep in fancy hotels and then go back home and sleep in an apartment you probably will not occupy the next month because of an eviction.
After Sally passed away, the work of Intersex Society of South Africa also disappeared, indicating another flaw in NGO politics, that our organisations are usually run by one or two people, and if one person leaves or passes away, the NGO itself dies.
Following Sally’s death, I thought about my activism and if I was making any difference at all. The majority of my work had become LGBT politics, and any contact I had with intersex work was when I was organising support groups, fighting with doctors or assisting academics in research and intersex issues. My final straw was realising that I could not afford to pay for my younger brother’s school fees. I had been raising him for over 7 years. His schooling did not cost much, yet I could not afford it, I was travelling the world spending less time with him and still coming back home to poverty. No one expects to get rich from activism, but I don’t think anyone expects to suffer from it as well. I had skills and qualifications I could use somewhere else, but my love for intersex activism and the hope that I was contributing to a better world kept me captive.
Then there were days I heard not horror stories from medical institutions, but stories about the treatment they received from some NGOs. A friend I know and cherish mentioned that they were undressed by someone in an NGO, to prove that they were intersex. This was not the only story I heard, some were more painful than others. I also realised how difficult it is to try and get an intersex person to report the offense; we are usually people that were ashamed of our bodies, are isolated, have life-long trauma and are easily taken advantage of by people claiming to have our best interests at heart.
In December 2014, I left intersex activism to focus on human rights advocacy in Southern Africa. Yes, the work pays better and allows me to take better care of myself. I have chosen to use my spare time to contribute to the intersex movement through helping smaller community-based organisations and groups to improve their intersex advocacy by investing in leadership from intersex people themselves, yet I hear the questions; “Why did you leave the movement? What will happen to the movement since you left and Sally passed away?” The most irritating thing about all of these questions is that they mostly come from donors. I am pretty sure that the movement will survive without me being involved full time. I am not the only intersex person in the country that can speak on the issues.
To my donor friends and allies: realise that the movement will achieve great things if you invest in intersex leadership, intersex organisations and intersex work. If you deliberately take the effort to increase the capacity of intersex organisations to lead, if you deliberately increase institutional funding instead of project funding, if you truly understand what self-care means for persons that have and continue to be the victims of medical and societal violence, then the movement in South Africa will survive with or without some us. It is investing in the sustainability of the movement. No-one can effectively advocate and lead on an empty stomach or without proper healthcare.
I still do not know how to describe intersex activism in South Africa, but I can say that there is hope. I have met younger activist that are more passionate and more realistic, activists that I know will continue and improve on the work already done. Young people that can represent themselves and others as well, and change the narrative of poverty, slavery and unhealthy lifestyles that often characterise our experiences of NGOs. I choose to describe intersex activism through these young people and I choose to remember Sally.
– by Nthabiseng Mokoena.