Who's normal? Disability, discrimination, and HIV/AIDS

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.

Her: ‘You answered yes to the last question on this form. What infection do you have?’

Me: ‘HIV.’ (I whispered, trying to mould the words around my lips as clearly as I could so she could understand without having me shout).

Her: ‘Pardon?’

Me: ‘HIV.’ (I screamed and looked behind me. All eyes were on me alright but I didn’t really care anymore. I just became sort of numb, like I was the only one in the room).

But she was not done yet. She excused herself and went into a back room for about a minute. When she came back our discussion went something like this:

Her: ‘I am sorry, Mr Zulu. According to US government policy persons with HIV are inadmissible to enter the United States of America. I cannot issue you a visa.’

Me: ‘Why?’

Her: ‘I don’t know but it’s the law. You are in the same category as terrorists and drug traffickers.’

Mind you this was barely a year after 9/11 and at the mention of the word terrorists, the whole room was all-ears listening to this exchange and I have yet to find a more zealous audience.

I later rang my contacts in Washington who got in touch with a number of members of Congress who in turn wrote letters of support to the embassy to issue a waiver to allow me enter those United States of America. That should have been fine but for the kind of stamp they put in my passport. It said I was paroled to stay in the US for about 60 days because I was going there to carry out activities of public significance.

Talk about multiple stigmas. I was black, visibly disabled and HIV positive. Added onto that, now my passport said I was ‘paroled’ – whatever the meaning intended, it still smelled of felony to my nose and looked it to those that saw it later. I recall that on the way back an immigration officer on the Canadian side showed my passport to his colleague and said, ‘look at what our friends in the south are now stamping in people’s passports.’

What do I make of all these experiences?

I believe my becoming visibly disabled at such a young age makes me look at things from a rather different perspective from many other people. A hundred times I have stumbled over nothing and heavily fallen, often in public. I once fell on the airport tarmac as I was walking to board a British Airways plane in Lusaka. Hundreds of people were bidding their relatives and friends farewell from the gallery above. So were my wife, children, and friends. Tens of times I have been invited for a radio, television show, workshop, or seminar and I find the venue is on the third floor and there is no elevator. Several times I have shared my story of living with HIV and when asked how I contracted and I reply that it was through sexual intercourse, jaws drop simply because I am sitting in a wheel chair. And this is often from the same group of persons who only moments before were suggesting that people who contract HIV are promiscuous. So, okay, here is a person with a disability who is ‘confined’ to a wheel chair and is supposed to be asexual but is HIV positive. That is not convenient for many audiences I have had discussions with. It kind of rips opens and exposes their neat but false theories and stereotypes about disability, sexuality, and AIDS.

When travelling I prefer to be on my own because when I am with someone else, airport personnel do not talk to me but the person that I am with. ‘How many pieces of luggage does he have?’ And at the coffee shop, ‘How many sugars does he take?’ Am I incapable of speaking for myself? Please have eye contact with me. Talk to me.

My expectations of society for people with disabilities are basic but fundamental. I cannot speak for all people with different forms of disabilities. But generally, I just want to be treated as any other human being. I want an environment that can provide me with full access to what everyone else has a right to. That means the full range of human rights including the right to be involved and actively participate in all issues that affect the human family. I don’t want to be ignored simply because I am using a wheel chair to move from point A to point B. I recently read a story from South Africa about AIDS community mobilisers who were inviting all members of their community to an HIV awareness meeting. But when they found a young disabled mother sitting in her wheelchair, they decided not to invite her as well! All persons with disabilities, regardless of the type, must be given the same opportunity to education and other social and economic rights as other citizens. Having cerebral palsy or Down’s Syndrome should not be an excuse to deny a person a chance to a full life.

What are the chances that these expectations can be fulfilled? I am an optimist. I have always been. I draw great lessons from history. There have been and are still many dark and unacceptable things that go on in our world today. It wasn’t such a long time ago that women in the USA and much of the Western world did not have a vote. In several Middle-East countries they cannot yet vote or stand for presidency or even drive a car. The Catholic church still will not ordain women priests. This is for no reason other than that they are women. In the USA, supposedly the most advanced and civilised nation on earth, every four years, including this one, leaders waste precious time and resources debating what two consenting adults can or cannot do in bed based purely on sexual orientation or preference. And for the same reason many Anglican denominations in Africa and indeed the world over are on the verge of splitting over the ordination of gay priests. This is at a time when there are critical issues of human rights abuses in places like Burma, Sudan, Zimbabwe, Congo and Tibet as well as the looming catastrophe of climate change caused by global warming that call for urgent and thoughtful leadership.

So the fight for disability rights has to compete against all these real issues as well as distractions such as whether life begins at conception or not. We will need to intensify our advocacy campaigns by becoming much more visible and vocal – both locally and globally. It’s not going to be easy. But such struggles have never been given on a silver platter. We have to fight with a purpose to achieve our goals. Eventually, we will succeed.

I know that in the end I am starting to sound rhetorical. And yes, at times I feel like this is a very lonely planet in the entire universe. That there is very little hope for change. But believe you me, change for good eventually comes. I believe that a little contribution from all over us can bring that change.

Before I close let me share with you all something else. I always travel with the crucifix even though my faith in God is smaller than a mustard seed. But the symbol of the crucified Christ shows to me someone who bore what I think was the ultimate stigma. They could have killed him in many other ways. They could have stoned him to death like they did Stephen. But death on the cross, particularly between two criminals, was a mark of disgrace, a shame. Although many people including famous celebrities use or wear the cross as fashion apparel, I see no glory in what went on at Golgotha. To me the cross is a reminder that we are in this world for one important purpose and that is to serve and help others, especially those in less privileged situations and positions than we are. Any other way I have tried to search for happiness and meaning has left me dissatisfied and yawning.

Regardless of how long it takes, good triumphs over evil.

Need evidence? Well, it wasn’t until the end of June this year, to the embarrassment of Condoleezza Rice, that the State Department of the United States of American struck Nelson Mandela off its list of terrorists. And oh yes, there was an American election on 4 November. Change for good will eventually come.

* Winstone Zulu is a visiting fellow at the School of Journalism, Ryerson University, Toronto, Ontario, Canada.
* Please send comments to [email protected] or comment online at http://www.pambazuka.org/