b'ing stigma-free

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If I was at the grocery store and I noticed another shopper with blue skin and pink hair, I’d probably stare for a moment or ask a question or two, which is why I try not to take it so personally when my appearance gets a similar reaction from a stranger.

I am an albino – or, to use the gentler, more politically correct phrase, I am a person with albinism. I have platinum hair and pale white skin. My eyes are light blue. (“Not pink or red?” you gasp. I’ll come back to that in a moment.)

Albinism is a recessive condition, one of the oldest documented genetic traits ever studied. The condition is rare, estimated to affect one in 20,000 people worldwide. However, having albinism feels as normal and natural to me as being right-handed, or speaking English. I’ve always had it and always will.

Because the condition is recessive, neither of my parents has albinism, although they were unknowingly carriers of the trait. In fact, I’m pretty sure I was the first person with albinism they’d ever met. Back in those days – it was the early 1980s – my parents didn’t receive a diagnosis of albinism until I was several months old. “She’s just a tow-head,” they were initially told. Even after the diagnosis finally came, they had nowhere to go for helpful information. Medical books at their local library had frightening pictures of people with albinism squinting in exam rooms or circus sideshows. Accurate information about the condition was scarce, as was support and reassurance. The stigma and isolation of having a new baby with albinism was suffocating. They encountered negative images, rude questions and uncertainty at every turn and, despite supportive, good-intentioned family members and friends, my family had no one who truly understood their questions and fears.

Eventually, through word of mouth and a little bit of luck, they made their way to the nation’s only support organization for people with albinism, then in its infancy. Through this group (called NOAH, the National Organization for Albinism and Hypopigmentation), my parents quickly saw the stigma of my condition melt away as they met real people with the condition living happy lives. A few years later, my little brother was born, also “a tow-head”. The two of us grew up with this second family in NOAH and each get-together felt like coming home (and still does).

Chances are, unless you know someone who has albinism you probably don’t know a lot about the condition. Unfortunately, most people have encountered more myths and misinformation than facts. Let’s put some of these myths to rest right here:

  • * We don’t have red eyes. It’s true that many albino animals have eyes that appear reddish or pink, but most humans with the condition do not. While our eyes may take on a reddish hue in bright lights (the medical term for this is transillumination of the iris), most of us have eyes that are light blue, violet or even hazel.
  • * Albinism causes uncorrectable vision impairment. In fact, vision impairment is a hallmark feature of albinism. Pigment is essential for a number of visual processes as well as in the development of the retina and optic nerve. Because we lack pigment, people with albinism have low vision that cannot be corrected with glasses or surgery. Our eyes may involuntarily shake (nystagmus), be extraordinarily sensitive to light (photophobia), turn inward (strabismus) and have difficulty with depth perception. While many of us meet the criteria to be considered legally blind, we often find clever ways to adapt to our low vision. Some people with albinism see well enough to drive while others read Braille.
  • * Albinism affects the hair, skin and eyes (or in the case of ocular albinism, just the eyes). It doesn’t affect our intelligence or overall health. In the United States, people with albinism have a normal life expectancy – and normal lives. We have jobs, travel, get married, have children, go to college, complain about our mortgages and do everything else a “normal” person might do. In other parts of the world, however, albinism can carry some very grave challenges, including higher rates of skin cancer and threats against one’s life. In parts of East Africa where adults and children with albinism are literally hunted and dismembered and sun protection is scarce, the vast majority dies before the age of 40 from preventable causes.
  • * Hollywood isn’t doing us any favors in our quest to raise awareness. Can you think of the last time you saw a realistic, sympathetic character with albinism featured on screen? There aren’t many of them. Albino characters portrayed in the media, most of whom are played by non-albino actors, tend to be evil, sickly, supernatural or just plain unrealistic. (Remember what I said earlier about low vision being a diagnostic feature of albinism? Now think about Silas from the 2006 hit film The Da Vinci Code speedily driving through the streets of downtown Paris.)

Even though the questions I encounter from strangers on a regular basis are often quite predictable, I try to answer each with good humor and patience even on those days when I don’t necessarily feel like being an ambassador for the albinism community: “Yes, it’s natural… No, you can’t touch it… No, my parents don’t have hair this color… Yes, I do have to be very careful in the sun… No, new glasses won’t help… Yes, I know how much people PAY to have hair this color… “ Seek out information. It’s OK to ask and to be politely curious; just remember to look for the person behind the condition.

As my friend Rick Guidotti from the amazing stigma-challenging initiative Positive Exposure says, “Change how you see, see how you change.”

 

Kelsey_ThompsonKelsey Thompson is an adult who has been legally blind since birth due to albinism. Kelsey holds a bachelor’s degree in psychology and biology from DePaul University and a master’s degree in rehabilitation counseling from the Illinois Institute of Technology in Chicago. For the past ten years, Kelsey has worked as a Vocational Rehabilitation Counselor in a variety of settings, providing vocational counseling and case management to individuals with myriad disabilities ranging in age from 14 to 94. Kelsey has also served on the Board of Directors for the National Organization for Albinism & Hypopigmentation (NOAH), previously holding the offices of Chair, Vice Chair and Secretary. Through NOAH, Kelsey has presented at numerous regional and national conferences on topics such as employment, self-advocacy and social/emotional aspects of albinism, including developing a conference session titled, “Stares, Smirks & Shout-outs”. She contributed to a chapter in NOAH’s recently published book, Raising a Child with Albinism: A Guide to the School Years.

National Organization on Albinism and Hypopigmentation (NOAH) acts as a conduit of accurate and authoritative information about living with albinism.  NOAH provides opportunities for people with albinism, their families and the people who serve them to come together to share information and support.


 

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