Stepping into the Unknown
The making of a film about disability and HIV
by Dr. Jill Hanass-Hancock
Health Economics and HIV/AIDS Research Division.
I woke up on Monday the 22nd of March with mixed feelings. After a year of preparation the moment had come at last. The camera crew and I went through the last checks in the morning and then we were on our way. Four volunteers from the Disability, HIV and AIDS Trust (DHAT) country offices in Botswana, Zambia, Zimbabwe and one volunteer from South Africa, who were prepared "to step into the unknown", jump off a cliff and tell their stories to the world converged at Durban airport in the afternoon.
We eagerly awaited the arrival of these extraordinary volunteers, who were prepared to tell their personal story so the world could learn more about the interrelations of disability and HIV in the Southern African region. These volunteers were no high ranking activists. They were just ordinary people who happened to have a disability and most of them were also living with HIV. I will never forget the feeling of achievement as Susan and her sign interpreter, Dixon, from Zambia stepped out of the plane. Then Isaacs from Botswana, Ronald from Zimbabwe and John from South Africa arrived. They were really here! It was wonderful. We loaded the luggage into the minibus and left for Oribi Gorge and the highest gorge swing in the world.
Now, some might ask, what has jumping off a cliff got in common with the story of disability and HIV in Southern Africa. First of all bungee jumping or gorge swinging is something anyone can do, in just the same way that anyone can go for an HIV test and disclose their status. However, people are scared and uncomfortable as one literally has to take a plunge in both instances. Having a disability in Africa is a great burden, and adding HIV to this is a double challenge. One falls off the edge of society twice. With assistance and the right support a person can become a master of his or her condition.
This is not the story of a "super cripple" – it is the story of four ordinary people with disabilities, who want to show the world that they can do anything, that nobody needs to feel sorry for them, but that they need support and assistance so they can enjoy and do the things in life that so-called able bodies take for granted. It is also the story of a group of people who had the courage to do something out of the ordinary. It is the story of people who decided that instead of playing on the tragedy in their lives they wanted to tell a story of challenge and courage. In October 2009 DHAT and HEARD sent out a call for participants and John, Susan, Ronald and Isaacs were amongst those who wanted to be part of this venture. However, it was not that simple when we reached Oribi Gorge, everyone had to decide if he/she still had enough courage to jump.
As you read this story and watch the film, which was released in July 2010, I hope you get a glimpse of the extraordinary courage, inspiration and enthusiasm that these people brought to the world. Here is their story:
On arrival, the gorge greeted us with its gigantic walls that went straight down into the valley. At first it seemed unimaginable that anyone could safely jump down these cliffs. The film crew and I were the only people in the team of ten who had seen the gorge swing before. I have a terrible fear of heights. The first time I saw the gorge swing, I swore that I would never jump down there. An old friend of mine, Geoff Hilton Barber, who is a well known disability activist in South Africa, had taken me to the swing about a year ago. He is a man who proves that despite his blindness he is able to do anything he sets his mind to and he was convinced that the activity DHAT and HEARD were looking for lay within this gorge swing. How right he was. It was unusual, but both organisations were struck by the idea and started planning to take it forward. Here we were a year later. Geoff joined us on the day of the jump and he was a true inspiration to everyone. Geoff had jumped off this cliff many times and he had coached a lot of able bodied as well as disabled people to jump at Oribi. He is convinced that while facing one's physical fear through the act of jumping one also symbolically faces his or her inner fears. Literally this is what we have to do many times in our lives, be it to go for HIV testing, disclose our status or simply to have the courage to do something extraordinary or seemingly ordinary. He also told us that jumping is one of the few examples where we are all equal. When jumping, there is no difference between a wheelchair user or an able bodied person, both face the same fear. However, by overcoming this fear we also strengthen ourselves and Geoff is convinced it gives him courage to deal with his own particular disability. All four volunteers were inspired as was the rest of the team, which consisted of a HEARD researcher, two sign interpreters, one assistant for Ronald and the film crew. Everyone had to make up his or her own mind. I felt inspired too, but at that stage I wasn't sure if I would have the courage to jump.
John decided to lead us on the day. Fearless, he had the harness put around his waist. He had really embraced the idea and he was in his element as a leader. John was born deaf and being homosexual and HIV positive as well didn't make his life easier. What impressed me about him the most was the way in which he had taken his life with HIV and disability forward. HIV testing had been for him a horrible experience, as the hospital staff did not know how do deal with a deaf person. There was no counselling before or after the test, just a blank piece of paper that said – you are HIV positive – I cannot even begin to imagine how he must have felt. Yet, here he was, a healthy, confident young man who had overcome his difficulties, a man who had more courage than I did on this day. Here, with us, he had everything he needed, a sign interpreter and a strong support group. John jumped first and when he came up I certainly had goose bumps on my skin. Isaacs was the next one in line. Isaacs is a disability activist from Botswana. He walks with a prosthesis on his left leg and has certainly experienced enough stigma through his physical disability. Isaacs found it very difficult to make up his mind. He was worried that something could happen to him. Could his prosthesis come off during the jump? What if…? His experience to the build up to the jump at Oribi was similar to his first HIV test, where he fortunately tested negative. However, on the day he made up his mind, he wanted to take this step as much as he wants to be successful with his advocacy work in Botswana. He climbed down the ladder to the jump site, fixed his artificial leg with an extra rope and off he went. Isaacs had truly taken a step into the unknown; he had a life changing experience which boosted his courage to carry his experience to other people.
After Isaacs one of the most amazing people I have ever met was led down to the jump site. Ronald had flown in from Zimbabwe. One could say that he had lost almost everything through HIV. He used to be a teacher but got sick with TB. When he finally had the courage to go for an HIV test he was already quite weak. In the course of his illness he lost his sight and his job. His family also left him. He was left alone in his house – left to die. Nevertheless, Ronald has a strong and courageous heart. He started ARV treatment and recovered his health except for his blindness. When I first met him I thought he looked quite ridiculous with his big cowboy hat and suit. However, during the week before the jump we were amazed how well he chose the colour combinations for his clothes. How can a blind man do this? Simple, he feels the texture and asks people to tell him the colour. Through this he is able to combine the right clothes. His fingers read everything a seeing person does with eyes. He can read if you give him information in Braille, he can take his medication on his own if you provide him with a medication box in Braille and he can walk the same way as you can if he can put his hand on your shoulder. I will always keep this in mind the next time I am with a blind person.
Next in line was Susan. Susan, from Zambia, is deaf and HIV positive. I first met her on a research workshop in Zambia. She supported our work and gave a really impressive testimony of what it means to have a disability and to be HIV positive. She knows how it feels to be triply marginalised because of her disability, gender and HIV status. Susan also described her first HIV test as horrible, as she was scared of what would come out of it. It took her two attempts until she finally had her test done. She was luckier than John as she had a sign interpreter with her (as with John, the clinic did not have a person who could sign). It was a big step into uncertainty when she was tested and it was an even bigger step to disclose her status. She lost her previous job because of her illness, her marriage broke up after her HIV test, not to speak of the fact that her husband did not take any responsibility nor did he get tested. However, she has two children that she needs to provide for on her own. This is very difficult, yet Susan has taken her life forward, stepped out of the vicious circle around marginalisation and self pity and is now building a support group in her village. This amazing woman had as much fear of jumping as I did, but she made up her mind and went with her sign interpreter to the jump site. Susan did the most beautiful jump out of all of us. She went down head first and she screamed with joy once she was swinging in the gorge.
When she came up I knew it was my turn. I had always said to myself that I have to try, but if at the last moment I didn't want to jump I had the right to withdraw just as I had explained this right to our four volunteers. I had already gone down to the jump site and was sitting five meters away from the edge with a safety rope on my harness. It didn't feel that scary. I thought that I would be able to jump. Now I had to climb closer to the edge. I thought about the many times I had been ill with fear just standing close to the edge of a tower, or on a cliff or just on the edge of a jumping tower in the swimming pool. I have jumped once from the seven meter tower, it was horrible and I never made the ten meter one. Now I was getting closer to an edge that was 120 meters deep. I asked myself if I had really lost my mind. Yet all the work of the last six years played around in my head and I thought back to some of the tragic stories I had heard.
However, now I had to take the last two steps towards the edge. My harness was connected to the swing and the safety rope taken off. The rope of the swing was heavy and the camera was directed at me, but I couldn't have cared less. I started to feel ill as I walked down to the edge of the cliff. It was enough to make the blood freeze. Did I really have to do this? I had this urge in me just to turn around; I really didn't want to be there. I thought about John, Isaacs, Ronald and Susan who were standing at the top watching me, hoping that I would also have the courage to jump. How could I not jump? My first HIV test was similar to this experience, I didn't want to do it, it was scary, but I felt I had to because I was pregnant. It was a true step into the unknown back then and it was a huge step now. You might fall off this cliff and never come back. For sure, that is what you think, but statistically driving a car is by far more dangerous. So there was the countdown. I looked straight into the gorge and jumped forward, head first. I think I screamed louder than ever before during the 70 meter free fall. I could only see a green mass coming towards me and the wind blew my face out of proportion. However, once the swing picked me up it was the most amazing experience. I really didn't expect this. I was alone in the gorge, which reached 360 degrees around me. It was wonderful, inspirational and scary. It made me realise that we human beings are first of all spiritual beings. I think our African fellows know this very well. It is embedded in their culture, maybe in the "blood of the continent". In Africa, we share this spirit through story telling, and here was a truly amazing story with a wonderful spirit. I thought back to one of the SADC parliamentarians who commented two weeks before the event that this "film is a great medium for reaching out to policy makers who in our African context sometimes are not friends with literature". Only now did I truly understand what this wise man was saying. As much as this story has inspired me and all the other people who supported us on that day, it was bound to inspire other people once they had watched the film. I was glad that I had taken this risk. As a researcher, one really isn't expected to reach this far into advocacy. It is a lot of work and a risk. However, being down in the gorge I knew we had done the right thing and I thanked HEARD and DHAT in my heart that they were prepared to take this risk with us. Sometimes you have to do something innovative and seemingly risky to make a difference.
On that day we all had a feeling of achievement and spontaneously the idea of a disability and HIV online support group was born, an idea that the four volunteers and DHAT have already taken forward. As some of the participants had never seen the sea, after the jump we all went to the beach at Port Shepstone to celebrate. It was a wonderful finish to an exhilarating day. There were these four amazing people and their support team, playing like kids on the beach. There was John the best deaf drummer I have ever heard, Ronald a gifted blind musician, Susan an incredible deaf dancer and Isaacs the gorge swing king without a leg. Here was the true spirit of Africa combined in a team of ten, a spirit that is going to be carried through our volunteers and the film to many conference and meeting rooms.
To see the film visit: Stepping into the Unknown
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