Living with Albinism –for those who never dare to ask me about it

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I have what’s known as type 1 oculocutaneous albinism. This means that I have little to no pigmentation (a chemical called melanin) in my hair or skin. It also affects the level of pigment in my eyes and, consequently, my eyesight.

There are a lot of misconceptions about people with albinism. As a rule, we prefer to be referred to as ‘people with albinism’ rather than ‘albinos,’ this sounds like you’re objectifying us. Living in the US, you come across a range of people whose knowledge of albinism varies from in-depth all the way to knowing absolutely nothing or, even worse, having unfounded negative views about the condition. Often when people don’t understand albinism they are polite and inquisitive, but sometimes they just stop and stare which I find really uncomfortable. I find I get asked the same kinds of questions a lot. I’ve made a list of some of the more common ones:

  • “You’re albino? Shouldn’t your eyes be red?” (Mine are blue, so that you know).
  • “Do you only come out at night?” or my personal favorite, “Are you a vampire?”
  • “How do you dye your hair so white?” and sometimes “Why did you dye your hair so white?”
  • “Is albinism contagious?” or, more bluntly, “Can I catch it?”

Some of these misconceptions are unsurprising, given the fact that people with albinism are often portrayed negatively in the media. Whenever you see characters with albinism on TV or in films, they are often portrayed as evil or as possessing strange, otherworldly powers. However, some of these myths about albinism have started to be challenged as people in the US have become more aware of the discrimination and violence suffered by individuals with albinism across the world, particularly in some African countries such as Tanzania. The United Nations and international governments have started to put political pressure on governments where people with albinism are persecuted, and this, in turn, has raised the public’s awareness about the condition.

My type of albinism has an adverse effect on my eyesight. When I was studying at college, my eyes quickly grew tired as I worked through all the books I had to read.  I also find it difficult to read the labels on the sides of food packets; this is really annoying as I also have an allergy to wheat (though this isn’t related to albinism) so I have to read everything really carefully. Like many people with albinism, the problems with my eyesight mean that I have chosen not to drive.  As you can imagine, this causes its own problems, and I have to rely on friends, Uber and family members when I want to make a journey.

I also have to be careful when I go out in the sun. Melanin, the pigment that my skin and eyes are missing, causes people who don’t have albinism to tan when they go out in the sun. I have to cover up and wear a lot of sunscreen to stop my skin from burning. In summer, I also try to avoid going out during the hottest parts of the day. Another problem is that my eyes are really sensitive to light. People who don’t have albinism have pigment in their eyes that moderate the amount of light that enters the eye and hits the retina. Without this pigment, even a small amount of sunlight can cause me to squint to see. This means I usually have to wear sunglasses all year around (I’ve experimented with tinted contact lenses, but I found that they felt weird in my eyes).

While it’s not always easy being a person with albinism, I NEVER consider myself to be disabled. There are aspects of my life that I need to manage more carefully than other people, but overall I’m able to lead a full and happy life filled with friends, work, and enjoyment.