'What the hell are you doing? You could have got yourself killed!" For the fourth time today, somebody is berating me for wandering out into the middle of a busy road. I'm used to it by now. Journalist, broadcaster and 28-year-old man I may be, but when you're an albino, it seems that in terms of road sense, I'm still, and likely to remain, at toddler stage.
Put simply, albinism is a genetically inherited condition whereby your body doesn't produce much, or any, melanin. Melanin is a pigment which determines skin colour. When too little is produced it can result in a person having very fair hair and skin. What a lot of people don't realise is that you also need pigment to see. If your body lacks melanin, then eye colour is often pale blue, or even pink - a very common, though not universal, trait in people with albinism. The lack of melanin pigment also causes disturbance in the nerve connections between the brain and the eye which results in poor eyesight. Glasses rarely help sufferers, and for many, including me, make no difference at all.
Contrary to popular belief, having albinism does not mean that you will pass it on to future generations. Both my parents carried the albinism gene but they do not have any of the characteristics of albinism and there is no history of the condition in my family. If I have children with somebody else who carries the gene, there is a one-in-four chance that the child will have albinism. However, no test has yet been devised to find out whether you're a carrier of the gene.
Albinism is something which is so rare - around one in 17,000 have the condition, though many more carry the gene undetected - that very little medical research has been done. I've never had too much of a problem with the fact that almost nothing is known about my condition - after all, it's not killing me. My particular strain of the condition, known as OA, or ocular albinism, is rarer than the most common strain of OCA (oculocutaneous). This means that I have the same problems with eyesight as OCA people, but I have slightly more pigment in my skin, giving me a look which I've been told is more akin to a Scandinavian or German than of anybody with a clear disability.
Having albinism seems at times to trigger one long round of misunderstandings and faux pas, especially from people in a position of power. School was the worst time, but because of the behaviour of my teachers rather than my peers. In an attempt to allow me to "integrate" more easily with the other pupils, PE teachers would bowl deliberately slowly at me when playing cricket so the ball would trickle across the ground. Examiners would, without asking me, enlarge my exam papers to the size of a small bungalow. Thankfully, then, as now, I found that I could make light of the situation. I was aware of my uselessness at ball games, but was far happier joining in and being the team clown than missing the opportunity to let in 14 goals in three minutes, as I did in one memorable session as goalkeeper for our school "B" team.
In adulthood I still feel annoyed that my skin is so pale and sensitive and that I continue to be spectacularly useless at ball games. It's a frustrating middle ground - eyesight too bad for mainstream sports but too good to join a blind football league. At times, the lack of information about albinism makes me feel slightly helpless, but the fact that nothing is likely to change in terms of further deterioration of my eyesight, nor in medical breakthroughs, gives me a sense of pragmatism. There's not a lot I can do about it, so why become morose?
The biggest practical issue is driving. I will never be able to do this. There's also a fairly banal succession of everyday minor irritations. I can never see the screen properly in the pub when the football is on so rely solely on amateur commentary from friends. I can't read the menus in sandwich shops. I spend on sun block each year what most couples would probably spend on a weekend trip to Paris. You won't be surprised to hear that I don't play cricket. What I do have is a worthless 2:1 degree from a mediocre university.
The university that I wanted to go to told me that I couldn't possibly do the media studies course, despite my excellent A-level results, because of my poor eyesight. The Disability Discrimination Act (DDA) now applies to the realm of education, which is helping to spare today's 18-year-olds this kind of insult.
When I went to live in South Africa for two years, I realised that the treatment I'd received from peers, and most notably from my educators, was minor in comparison to how black people with albinism are treated. It was only after a few months of living in Cape Town that I noticed a disproportionate amount of homeless albinos. Striking up a conversation with one utterly desiccated-looking man (he was 26), I looked at his skin, already ravaged by skin cancer, and touched his arm, which had the texture of bubble wrap and sandpaper. Sun block was obviously way beyond his financial means and nobody had ever told him about the benefits of wearing a sun hat.
Vinkosi told me that there were many people with albinism on the streets in South Africa's cities as they were commonly rejected and outcast from rural societies. Albinism is more prevalent in Africa than the UK (it is believe to affect around one in 4,000 compared to the UK's one in 17,000) but the prejudices are horrific.
In Zimbabwe, Tanzania, Lesotho and other African countries, in many rural areas there are beliefs that people with albinism are cursed and are mentally sub-normal. In Zimbabwe there is an almost complete absence of people with albinism in the catering industry as there is a widespread misconception that albinism is infectious. A man called Milton said that in his home, on the Eastern Cape, he was told by village elders that he would never die, but would simply disappear. Thrown out of his village at the age of 19, with no qualifications, he told me how there was a belief among young men with HIV that raping an albino woman would "cure" them.
Societies, including the South African Albinism Society and the British charity Sightsavers, which works across Africa with albinos, are attempting to educate and inform people to shatter these prejudices.
My own journey, bumpy and as full of cricketing and exam hall mishaps as it has been, has been a breeze compared to how people with albinism are treated in societies where the condition is still treated as a kind of "evil mystery". Avoiding getting run over by a truck in south London now seems an easy task by comparison.
The five questions I'm always asked about albinism
Doesn't that just happen to rabbits?
No. Pretty much any animal can have albinism. I've no idea why rabbits get all the attention - though they are rather cute.
How can you be an albino if your eyes aren't red?
Many albinos are like me and have blue eyes though you will also encounter people with albinism whose eyes look pink-ish. This is because there is no pigment in the lens of the eye and so sunlight bouncing off the eye causes the observer to see nothing but a pinky reflection.
Why don't you wear glasses?
Glasses do help a few people with albinism. All it does for me is make things worse. This is because nerve connections between the eye and the brain are one of the main effects of albinism, something that glasses can do nothing to rectify.
So what can you actually see?
As albinism is a condition you are born with, I have nothing to compare my vision with. Guesswork tells me that I think my sense of distance and perspective is distorted and anything further than a few feet away lacks detail. It is impossible to generalise as there at least 22 different forms of albinism.
What did you think of the Da Vinci Code?
I thought it was hilarious. If only all people with albinism had such evil powers then we would be clearly be running the world by now.Reuse content