Winstone Zulu
4 December 2008
opinion
Through vivid examples of refused school enrolment, visa denials, and countless negative assumptions in his interactions with other people, Winstone Zulu shares his reflections and experiences of physical disability, discrimination, and the stigma surrounding HIV/AIDS. Though disability rights may have to compete with a wide range of other issues for adequate recognition, the authors speaks of his optimism around the prospects for genuine equality for people with disabilities.
I have been asked whether I could put down my thoughts on a couple of pages on what living with a disability is like and the challenges that I have experienced as a result. I am glad to share these experiences and my personal thoughts with readers of Pambazuka News. I have also taken the liberty of expanding my discussion to include other forms of discrimination that I have faced because of being different from what is considered 'normal'.
Unfortunately, I will not attempt to answer the difficult question of why some people react with such revulsion at the sight of a person with a certain disability. I still do not understand why whole societies stigmatise and discriminate against persons with disabilities when compassion and understanding is what is most needed. I have often wondered whether my presence brings to the fore the reality that everyone is vulnerable to disability, either through illness or accident. Or that, in fact, even a very long and healthy life can eventually lead to disability. Maybe the idea behind shutting doors to persons with a disability is no more than an attempt to 'see no evil, hear no evil, speak no evil'. Could it be that my presence is perceived as a bad omen that speeds up someone else's process of becoming disabled?
Fortunately, I have faced stigma and discrimination for other reasons that make me doubt the reasoning above. If it were true that my presence reminds someone of their everyday likelihood of getting disabled, why would a white man discriminate against me? How would my presence make him susceptible to becoming black? I don't know, and maybe it's just me, but I can't seem to tell the difference between the colour and general physical features of Germany's Chancellor Angela Merkel and Melanie Vant, a young Jewish friend of mine in Washington, D.C. Honestly, I cannot tell much difference between those Saudi Arabian kings and George W. Bush or John McCain. But I believe that when there is a deliberate intention to discriminate, differences are created. It is said somewhere that those that are targeted for discrimination are the first to be stigmatised. And so we had Hutus in Rwanda coming up with a 'clear' description of how Tutsis looked despite generations of intermarriages and intermingling.
These days I hope to get a better insight into these hard questions in the course on disability and development that I have been invited to attend at Ryerson University in Toronto, Canada. At the moment I have a feeling that it is not what we look like or what kind of disability we have that makes us targets for stigmatisation and discrimination. There could be deeper reasons. When I get to the bottom of that I will send you an update. Meanwhile, here are my experiences and thoughts around this topic.
I had polio when I was three years old. My mum tells me that my entire body was paralysed at one stage. Mercifully, most of my limbs and body functions retained full control except my right leg where the muscles failed to fully develop. As a result I ended up walking with a very bad limp throughout my childhood and part of my adult life. When I turned 38 my body could no longer support the weight that often accompanies entry into middle age. I started using crutches, which I still do. For longer distances such as at airports and university campus I use a wheelchair.
In Zambia, where I was born, my first experience of discrimination based on disability was when my mum tried to enrol me into first grade when I turned seven. One look at the way I was standing was enough for the head teacher to conclude that giving me a place in school would be a waste of government resources. This was despite the fact that I could prove that I could read and write. My immediate elder sister, Monica, had taught me the basics at home and I had picked up enough on my own to fit in the first grade. The following year, mum took me to another school but entry was denied for the same reason. After a third attempt she gave up as the argument had now even changed from that based on my disability to that of being over-aged for grade one. It was not until I was 14, when my eldest sister Matilda managed to find me a place in the fourth grade, that I first set my crippled foot in a classroom. Because of this delay I was only able to complete my secondary school when I was 23 - with all the complications of mixing with sixteen-year old kids and teachers who were around my own age.
Despite these challenges, when I was 26 I managed to get a scholarship to study political science in St Petersburg - then Leningrad - Russia. One of the requirements for entry into Russia was a full medical examination which included an HIV test. My HIV test results were positive and access to enter Russia denied. It was around this time that I first started to connect the dots between the stigma and discrimination that surrounds disability and other conditions such as HIV/AIDS. For example, when I asked why I could not travel and study in Russia, the answer was not that I would be a danger to other people in that country. The refusal to allow entry was based on the premise that I could get ill there and be a burden on the Russian government's medical resources. Memories from twenty years ago flooded my mind and I could see that small boy in khaki shorts and blue golf shirt standing in a queue, full of hope and expectation, anxiously waiting to be enrolled into first grade, only to be told that it would be a waste of government resources to give a disabled child a place in school.
In 1992 I was invited to assist in setting up an AIDS program at the Valley Trust, right in the middle of the beautiful Valley of a Thousand Hills in Kwa-Zulu Natal, South Africa. I was offered a year's contract but my accommodation would not to be ready for a couple of months. In the meantime, a young couple that I met during one of my talking circuits invited me to stay with them. The director of the Valley Trust, a Mr Pit, would then pick me up at a gas station nearby and drive with me to the project site, about five kilometres away. Every morning of each working day I stood by the gas station waiting for Mr Pit to pick me up. And so did a white boy of around 17 years of age who was picked up by a white woman on their way to some workplace uptown in Botha's Hill. Everyday, we stood side by side. Sometimes his pick-up would come earlier and some days mine would. After a while we started talking and chatting to each other and we would say bye-bye when either of us was picked up.
One morning a police car stopped by and one of the two officers asked us what we were waiting for. We each explained to him that we were waiting to be picked up. He ordered me from that day onwards to go and wait at the nearby bus stop but allowed the other boy to wait as usual at the gas station. When Mr Pit drove up I explained to him why I had moved further down the road. He said that was what apartheid was all about. Just being black meant I was a danger of perhaps blowing up the gas station, he told. Or, maybe, I was simply unsightly standing there in my black skin, I thought.
In 2003 I was invited to visit by both RESULTS-Canada in Ottawa and RESULTS-International based in Washington, D.C., USA. I applied for a Canadian visa back home in Lusaka, Zambia, but decided to apply for the US one from the American Embassy in Ottawa. On one of the forms there were a list of questions that inquired whether you had been convicted before, were involved in a war crimes tribunal, an expert in arms and bombs, etc. The very last question in this category was whether you had an infectious disease of some significant public health concern. Although I already knew that the US, like Russia, did not allow entry to HIV positive people, I answered yes to the last question. Besides, I was entering the US for a media promotional tour which would involve talking about my living with HIV; how could I not tell the truth?
I was asked to report the following day for the results of my application.
And there, in room full of white people, I sat in a wheelchair facing a white immigration officer who sat behind a glass partition. There was microphone to allow me communicate with her. But for some reason the technology was not working well and we ended up shouting in order to hear each other.
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