I am Kristina I was born on January 22nd 1977 in Warwickshire, England. My parents already had my sister Stephanie and then I came along. I don't know what my parents thought about my birth as we have never really sat down and talked about such things. I just know they kept me in "special care baby unit" for 3 days as there was not something quite "right" with me! They were told by some ignorant professor that I had albinism and was going to be blind. Anyone who knows anything about albinism knows this is not true. Sure there are visual problems but I am far from blind. I guess maybe I should give a brief description of what albinism is.....Well the type I have OCA1 means my body can not produce the pigment melanin which means I have gorgeous shiny white hair, blue eyes and lilywhite skin. The lack of pigment in the eyes causes poor vision. Mine is 20/200 which means what a fully sighted person sees at 200 metres I see at 20. This sounds bad when yuo put it in these terms, however, its not. As you can't miss what you have never had I consider my vision to be perfect! I know in reality this is not true, but I have nothing to compare it to. As far as I am concerned its normal not to be able to recognize people until they talk to me and not to be able to cross a road without taking a deep breath and listening very hard! Or just seeing cars as objects that drive round without people. Or never having seen a bird sitting in a tree apart from in story books and not being able to see the rain coming down unless it is splashing in puddles.....Welcome to my world!
I also am very sensitive bright light, if it shines in my eyes it is physically painfull and I am completely blind all I see is a mass of golden white. For you guys, I guess it is like holding a mirror up to the sun and seeing its reflection. Thats not all I have wrong with my eyes......This is painting a bleak picture of what things must be like but honestly, it is just as normal to me as perfect vision is to you. I have Nystagmus which means my eyes are constantly moving, trying to find a spot to focus on but can't. People think this must mean everything appears to move infront of me. Believe me this is not true at all. If I wasn't told I had nystagmus I would not even know, I can't tell when looking in the mirror. I only know when I am tired and my vision gets worse, I get headaches, can't focus on print without it just jumping all over the place and then this leads to frustration..If you have albinism and read this I am sure you know what I am talking about. There is a whole lot more that does not work with my eyes but that is just the basics for you to know. Infact I also lack the ability to judge distance and speed properly etc, but again it is hard to explain because this is all part and parcel of my everyday way of seeing things......Its normal!
My skin, which has no natural protection from the sun is VERY prone to burning...10 minutes and I am deep fat fried! This is my biggest stumbling block I have this weird notion sometimes, that "Oh no the sun won't get me today" and two hours later I look like a lobster and it is very painful, I feel sick and have a stomping headache. I do try now and am not half as bad as I used to be. I know I am a fool but it is SO easily done. Back to my story....5 years after I was born my little sister, Victoria came along, with a mass of mousey brown hair and perfect vision. I always think to myself, my parents can't have been too dissappointed with the way I turned out if they were willing to chance having another kid. This is my reasoning and way of comfort in how I perceive my parents views of albinism.

Hell and back

Having 2 pigmented sisters meant that I was brought up exactly the same way as them, this, is probably how I have turned out to be the tough cookie that I am to date! I think normality is THE BEST you can do for a child in this situation, however, there comes a point when "normalizing" turns into "denial". From a young age a lot of my memories were of trips to the hospital and seeing loads of specialists about this, that and the other. Which meant my parents were always aware of my physical needs but not my emotional needs which were tossed aside and hidden in the depths of some closet. This was a place where albinsim was like an old box you did not want to delve into too hard as it was not quite clear what you would find and where it would take you. So the solution was to forget about its existance and in doing so supposedly stopping problems from arising.

My early school years were fun and I guess I could even go as far as to say, I enjoyed them! I was a bright child who was always top of my class, eager to learn but painfully shy. It must have been explained to me when I was very small that I had albinism or else how would I have known? But there was something within me where I knew I was different from everyone else. There was not ome sudden moment when my situation suddenly hit me. Despite my shyness I had a mass of frineds and had many happy times.

I guess, it is when I reached about 8 when I had moved schools and areas that I began to realize the world was not such a happy place. I think the first negative comment aimed at me that I can remember was when I was introduced "as the new girl" infront of the class and some little boy shouted out "She looks like my granny, she has got white hair" and the other kids started to laugh. I was not used to this and although I knew that I was "different" it was the first time I had really recognized it and the implications of my albinism hit home. From then on I was a target for peoples pent up frustrations and anger. My inability to play ball games meant I was always the last to get picked and even to date it still hurts when I think back. The thought of standing on my own like the misshapen teddy bear nobody wanted to buy, and the teacher yelling "who wants Kristina on their team?" That echoes through my head even now and tears well up in my eyes. Even my own friends openly told me their team would loose if I played for them. They were the same friends who used to steal my stuffed elephant, finnish lunch before me and run down the end of the field because they knew I could not see them. Levaing me to wonder round the vast school yard to see if I could find my other friends. Sure enough I always ended up playing with somebody! The three years while at that school dragged by so slowly and yet, I kept my deep unhappiness to myself. I became the kind of child who would only answer monosylabically in fear of being ridiculed. I knew the step up to high school would be my crucifixion.

My first day at high school was not as bad as I imagined it would be. I came back from that day with a flicker of hope inside me. However, that was short lived! Maybe the other kids were too shocked on my arrival that they did not know what initially to say, they made up for it in the long run and some. I think I can safely say that my high school years were probably some of the most misserable times of my life.
I was trapped in a world of ignorance, wherever I tried to escape from it I hit yet another brickwall until I decided it was a lost cause. This was my life and I would just have to accept this was how it was going to be. From the minute I arrived at the school gates to the end of the day when I left 5 whole years later I faced, humiliation and hatered. Being pushed and spat at, that I could cope with. however it was the mental bullying that hurt. Every time somebody made a comment it felt like a dagger being pushed further and further in to my heart. some of my teachers proved to have the same negative attitude toward me as well. They all were aware of how my albinism affected me my parents and itinerant teacher had gone in and told them, but some chose to ignore what they had been informed and inflicted their own preconceived attitudes toward albinism on me. My English teacher made me stand up in the biggest hall infront of 60 kids to read a scene from Romeo and Juliette. I was waiting for the ground to swallow me up, anything but read in public and show my face to the world. I would have rather died than do that. I stood on the stage and proceeded to read, the book shoved only inches from my face so I could see it. One line in and he shouted out "For gods sake will you move that book from infront of you we cant see your face?" By this point I was nearly in tears and bright red. Then a kid shouted out "why would we want to see her face she is a freak any how?" So I was left no choice but to shout out that that is the only way I was able to read. I was firmly told that I should get a better pair of glasses. Another teacher proved her prejudice when I could not read an over head projection in my German class. She told me in no uncertain terms "people like you shouldn't be allowed here". Least said about that the better.

Despite the hatered and unhappiness I have always been one to have lots of friends ( don't quite know why!) They whitnessed my daily ritual of abuse but I chose not to talk about it, or even acknowledge my albinism because that would make it all the more real. I was very good at the flute and piano and was in a nationally acclaimed band. I had art work displayed round school, was awesome at swimming and Judo and was also an in-house school prefect. So it was not all bad.

I don't wamt you to think I cried myself to sleep constantly for five years and had no fun at all, that would not be true either. I am probably one of the most sarcastic creatures god created and spend many hours with friends in band practice and on tour acting out satirical skits we had prepared, that our peers just looked upon in awe!! My confidence was none existant, I hated myself and could not even look at people, I felt my funny hair and weird eyes were not worthy of anyone elses "perfect" existance. I found myself caring less about getting the grades and more about how I could be accepted. I achieved this by joining the "alternative" hippy/grunge scene where people were seen for the person within. So my gorgeous white hair turned blue, braided and I started to dress like a street begger! I revelled in the fact that I was mocked on my new appearence, something over which I had control, not my albinism that I could not help

Eventually I hit 18 and left high school for university, this I thought would be a new beginning. How could things dramatically change though, when I hated myself, had no self worth and wanted to leave this planet? After being made to feel like an outcast it is firmly part of your being and hard to walk away from. I started my degree in politics living away from home with the hope my situation would change. The potential for it to was there but I was too messed up. I didn't want people to know about my vision or albinism, I didn't want to talk about my past and I built up a protective shell. Gradually I stopped going to lectures, stopped trying so hard to make friends and slipped down the slope of nn eating disorder. So I gave up and came home. Whilst at home, feeling disheartened by life I decided it was time to stop wallowing in self pity and get over myself. So I got a part time job, reapllied to the same uni and went back in the september of that year to study psychology and cultural studies.

It was now up to me to make what I could out of this AMAZING opportunity that I had been given. After initial problems I had made it! I became open about myself and my situation, made the most AWESOME friends who would do anything for me and generally had the time of my life. One of the most memorable times was about this guy on campus, who all the freshers wanted to date and in a club one night, he chose ME!!
So last year I graduated from college, with an address book full of amazing friends an honours degree and the the thought of a bright future. But I still had unresolved issues of whom I was and where I was going...

The power of words

It all really started when I went to the Albinism Fellowship Conference '99 in late november (NOAH's sister organization). I had never heard of Positive Exposure before. During the time I spent at this event I came across Rick Guidotti's booth with a whole bunch of stunning photos of people with albinism, however, I looked at them and felt detached from the beautiful images I saw. How could I look like these people and come under the banner of "beautiful"? I was a freak afterall..I watched Rick over the weekend take peoples pictures and was always in the background. Every time he captured me to try and take my photo I refused. After many negative experiences I did not want to get hurt and exploited again and didn't feel I was able to place my trust in anybody else. Well lets just say persistance is one of Ricks attributes! So on the last day of the conference during the "final" speech, I reluctantly agreed to do a shoot. I was feeling nervous and unsure and was unable to work out this enthusiastic "Man behind the camera". He was throwing adjectives around that had never been used to describe me, like "You are amazing, look at you", "Wow, you're the bomb". I felt a bit more at ease with the situation but still I didn't feel like I was the one being photographed, it seemed somewhat unreal. Then out of nowhere I heard a few words that nobody in the whole world had ever said to me, "You are beautiful". It was like somebody turning on a switch inside me, it felt right and for the first time in 22 years I actually started to believe it.

It was not really until the long train journey home that it hit me what had actually just happened. I got out the Polaroids Rick had given me. looked at them and smiled. Why should I be ashamed of myself and feel inferior to the rest of society? For the first time in my life on that cold november night I felt equal to the world, not just on the inside but on the outside too. I was proud of who I was and began the journey to self acceptance.

At that time I was doing volunteer work with kids from disfunctional and poverty stricken homes. When I returned to work the day after the conference one of my co-workers commented on the fact that there was something different about me. I began to tell her my story, showed her the pictures and she came over and gave me the biggest hug! From then onwards I started to walk round with a feeling of confidence that I could do anything I wanted. I stopped colouring my hair, people noticed and I got a sense of satisfaction and feeling of pride telling them I had albinism. I started to look people in the eye when talking to them, something which I am learning to do but find hard. After being conditioned into not drawing attention to my eyes and being told my face was the ugliest thing people have ever seen, I can't just undo years of torment, but I am trying.
To describe how this whole experience has changed me may sound over dramatic and unbelievable, but it is something only other people with albinism and the person taking the pictures (Rick) can truely understand. To hear someone challenging what society has told you for the whole of your life gives you the feeling that you have somehow been granted the permission to become yourself and learn to love whom you are.
I realize many people in this world look at me and see no further than " Kristina The Albino Girl" but that does not matter to me any more, what matters is being able to live my life without a dark cloud hanging over me determining my feelings and aspirations. Over the last 12 months I have grown so much as a person, in ways I never could have imagined. I am not going to let other peoples perconceived ideas about me determine my future, the only person whom is going to do that is myself. I now feel I am able to challenge myself and hope my new found confidence will be able to challenge other people as well.
Finally, I don't look back on my short life with regret or bitterness.....I obviously didn't enjoy the way I have been treated, but I am glad it has lead to how I feel now. Afterall there are many pigmented people who have not yet found self acceptance. I don't subscribe to any of the "Having albinism has made me a better person" analogies. I have many friends who are much nicer and caring then I would hope to be, who don't have albinism. What I do believe though is that it has challenged my perceptions of myself to a far higher degree then most people of my age, and has allowed me to experience the harsh realities of life that so many people never see. But there is still something inside me that makes me feel ashamed at how I have viewed myself and allowed myself to be viewed.....I feel kind of selfish and embarrassed at the emotions I have crammed into my short life, from wanting to make a desperate departure from this planet, starving myself until I could not get out of bed to the feelings of contentedness I feel to date.
All of this could not have been done without the help of so many people with and without albinism and for those of you who have read this page and have been in contact or spent any time with me.....IT IS YOU! So thank you.
If you have the time I would love to hear what you thoughr of my page so, please feel free to email me.

kristinavenning@aol.com

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