by Tebogo ‘Pana’ Makwati 

Being intersex has affected my life from the moment I came into the world. 

I was born in a small town called Pampierstad. My family and I then relocated to Kimberly for work purposes, but then I was sent back to Pampierstad to live with my grandmother and to complete kindergarten and the first few years of school. I eventually moved back to Kimberly permanently. At the time, my parents explained that me being sent back to Pampierstad was a result of the kindergarten being better there – but as I got older, I realised the truth behind why they had sent me back. 

Growing up, I was that child that was always going to the clinic for checkups. It took a lot away from my childhood because I was always told that I was sick, that I was not well, and that I had to be kept away from my community. I was not allowed to play with the other kids and was kept inside of my granny’s home. It was a lonely time in my life. I did not have friends outside of my cousins until I finally made my first friend in grade three, right before I was permanently moved back to Kimberly. Looking back, it is almost as though my family did not want me to make friends outside of the safety of our home, as though they were purposely keeping me away from the people around me and my community. I believe that the reason for this was due to my intersex variation. In a way, I believe they were trying to protect me and to prevent others from finding out about my intersex identity – they did not want me to be outed. Even at the school I attended back in Pampierstad my aunt, who worked there, was constantly urging me to spend my lunch time with her or telling me which children I was allowed to play with. Even though I was not aware, my family had found their own way of trying to support and protect me.  

However, in some ways, their attempts at protection failed the very same person that they were trying to keep safe. When I reached puberty, and started asking questions about myself and why I was always a sick child, why I was always going to the doctor for assessments, and always having to take medication, my family would not tell me. I needed answers about myself, my body, my history – and I did not get them. I was constantly told that I was a “special” child, that I was God’s gift and that was the reason for my many trips to the doctor. They told me that I needed to take the medication I had been given for the rest of my life otherwise I would die. There were no explanations. No one would give me the answers that I needed. 

It was only when I attended an event hosted by an organisation called Legbo, an LGBTI rights organization based in Northern Cape, that I started to grow an understanding of what it meant to be an intersex person. The event was tackling transgender, gender-diverse, and intersex issues – and it was there that I met Whitney Williams. Whitney was the first person to give me advice that helped me understand myself. They had advised me to do a hormonal test and although I did not know where to start or what to make of their advice, the next time I got an opportunity to go to the doctor I asked him to run the test for me. It was only then that I finally got some sort of answer. The doctor told me that my chromosomes were “different” from being simply ‘male’ or ‘female’ – and when I pressed him to go further with the process that would allow me to gain a better understanding of my body, and what exactly all of these things meant, he refused. He told me that without my parents’ consent, I could not have access to my own medical records. I was so angry. I had finally gotten some information about myself and still no one wanted to talk about it, no one wanted to explain it to me or to help me understand. I was forced to do my own research. The issue with this is that at the time, there was not a lot of information on intersex persons – especially not when you did not know how to describe it other than your hormones being ‘different.’ After searching for some time, I finally found an article written by Sally Gross and that is where I came to understand that this “difference” was being intersex.

I finally had an answer. A real, concrete answer to my identity. And with this answer, I wanted to find out exactly what this all meant. So I went back to the doctor, once again in the uncomfortable position of asking questions about my own body. He would not answer me without my parents present, so I went back to my parents and told them about the consultation, asking them to come with me to the next one so that I could get more answers. I was not prepared for their reaction. My mother started crying, refusing to come with me and pleading with me to not “do this.” My father also refused. I was so close to the answers I had been yearning for about myself, answers that I had searched for, on my own, for so long, and I was being refused these answers yet again. So, I went to my grandmother, she was the first person to be straightforward and honest with me about my history. She explained my childhood, and how, because of it, I was subjected to taking the medication I was on, and she confirmed my suspicions that I was not allowed to play with the other children out of fear of them finding out I was intersex. She gave me more answers, and I appreciate her for that. 

At this point, I still did not fully understand what being intersex meant for me though. It was only at 19 years old that I had the opportunity to see a doctor again. I had stopped taking my medication and was getting extremely sick, and I wanted to know why this was happening. I was referred to a gynaecologist, and after many screenings, and my blood samples being taken – again – I was given the same instructions that I had been given all my life, I had to take my medication. No explanation, I just “had to.” They would not tell me why, despite my asking. I left it, feeling defeated, I continued with my life.  

It was only much later that I managed to get my first official diagnosis. As I had before, I did my own research on the questions I had. Was I the only one? What did this mean? What would happen now? I started following intersex activists, reaching out to them, and eventually I was invited to an intersex gathering. Suddenly, I was surrounded by people like me. Suddenly, all at once and perhaps for the first time in my life, my questions were being answered. I learned a lot about what it means to be intersex. But more than that, for the first time in my life I was able to be part of a community. In finding the answers to what it meant to be intersex, I found myself, I found my community. I finally had power over my own story, and I was not waiting for others to tell me about who I was. I was no longer being forced into isolation because of fear that people would find out about my identity.  

As much as I want to say that I have reclaimed my power, that no one can make decisions for me anymore, I am faced with the reality of being intersex in South Africa. The South African government is trying to have conversations with the wrong people rather than implementing meaningful changes for the benefit of intersex people. As intersex people, we have people making decisions for us on every level – which end up being the wrong decisions because we ourselves are not included in spaces where decisions are made. We are not even being consulted yet these decisions have direct impacts on our lives.  

I wish that instead of making decisions for me, my family could have let me be. I long for my childhood experience to be different, but because of the decisions made for me I had to struggle without understanding. I had to take medication that has badly impacted my health. This is something that many intersex people experience, we are denied choice. If I could say anything to the parents of intersex children, I would beg them to let their children be. Allow your child to speak to you, to tell you for themselves if they are happy or not. Do not think that deciding for them is protecting them, trust that everything will be okay. They will be fine because they are not alone. We are not alone. We have each other.