Introduction

Why are people with borderline personality disorder portrayed as crazy, dangerous people? Why is youth glorified and old age feared? Why do people picture emergency rooms as places of havoc and distress? Why were the Jews so hated in Hitler’s time? All of these views are or were influenced by media. Clearly, media is powerful and can be used to help or to harm vulnerable groups of people.

            Although underrepresented in research and disability studies conversation, the albinism community is an excellent example of a group of people being both harmed and helped by media. A genetic disorder involving a lack of pigment which causes visual impairments and skin complications, albinism is often brought to one’s mind as a person with red eyes staring out of the darkness. However, the reality of living with albinism is not much different that living without it—except for the skin and eye and often psychological considerations. Why is it (and often any disability) portrayed as “other”? Looking at albinism in the media is crucial for knowing how the disorder has been portrayed and how people can portray it differently, where needed. Specifically, albinism has been educational in regard to music, it has been portrayed as evil in movies, and it has been shown as beautiful in photography.

 Albinism in Music

Music has served as educational, therapeutic, and even lifesaving for people with albinism. One example is Brother Ali, a rapper who has albinism and converted to the Muslim religion (Arts, 2009). Known as “the albino kid” while growing up, he progressively experienced loneliness because of the condition. At age nine, he accepted this identity and embraced creating music.

Increasingly, his music became an “identity thing” for him as his albinism excluded him from white and African American circles. He made friends through hip hop and rap, and he performed for coffee houses. Music has served him in a powerful way: he found relationships through music when albinism would unfortunately be allowed by others to get in the way.

Performers Jonny and Edgar Winter were brothers who performed blues through the 1990s and were especially popular in the 70s (Skelly, n.d.) Since both brothers had albinism, they definitely stood out in performances! (J, 2014). Although there are not many specifics regarding music being helpful because of dealing with albinism, the brothers definitely shared their identities among having albinism, being famous musicians, and other aspects of life. This is similar to Brother Ali in that music and albinism are foundational identities for some people. Seeing albinism in normal, every-day people with dreams helps debunk stigmas about this genetic disorder.

Another albinistic singing group not only finds relief from emotions through singing, but the individuals literally experienced life-threatening danger because of having albinism, so they sing to share awareness. Tanzania Albinism Collective is a group formed out of the horrific experiences that people with albinism go through in Tanzania (Frank, 2017). Witch doctors buy body parts of people with albinism because of supposed magical powers, and people with albinism are regularly attacked, mutilated, and killed.

Hearing of such tragedies, Ian Brennan traveled to Africa to assist people with albinism living in a safe haven to begin a music album to help them heal. Some of the songs “capture the feelings of desolation amongst the participants. But the album also contains moments, like in the song “Happiness,” that express something else: the joyous feeling that comes from telling your story on your own terms” (Frank, 2017). Figure 1 shows a few song titles that the group composed.

Figure 1. Songs by Tanzanian Albinism Collective (Frank, 2017).

 The group began with no musical experience, but Brennan states the value of music beyond expertise: “Music occurs in real time. And even the most cerebral and techno music is played with the body, even if that is just a forefinger clicking a trackpad. With most forms of art, process leads to an object — a film, a sculpture. With music, the process is the object” (Frank, 2017). Tanzanian Albinism Collective 

Not only can music be therapeutic when it is performed, but the process of learning music is important to many people, including many people with albinism. Alejandro Rosado is a boy with albinism who is legally blind and has a bleeding disorder related to albinism who takes piano lessons from a music therapist (Freeman, 2016). “The youngest of three children, Alejandro’s vision impairment has always meant he needs more attention, his mother said. Still, she knows he has abilities that other children don’t have.”

He sometimes needs help finding classes at school due to his visual impairments, and he memorizes his music since he has so much trouble reading the notes, but this does not stop him: he recently played for Florida State Music Teachers Association (Freeman, 2016). His piano teacher will ask him, “Do you want to challenge yourself? I’ll let you learn this one on your own.” She has great confidence in his abilities and “knows he will practice the music twice and memorize it.”

I have also appreciated learning music, and memorizing repertoire has helped me as well due to seeing double or having difficulty tracking. Playing piano has been an incredible way for me to express my emotions, and it is still one of my most precious activities to partake in. In fact, I always say that my combined interests of music and disability issues are what led me to go into music therapy.

Music is powerful for people with albinism because of the bond that they find through it, especially since social bonds are often negatively affected by people’s view of albinism. Although music has clearly been used to spread the word about the situations of people with albinism, it would be beyond fantastic to have music therapy studies done on people with albinism to see how music can affect coordination and visual impairments or self-esteem in albinistic people.

Bibliography

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Frank, P. (2016, June 23). Woman Fights The Stigma Of Albinism With Stunning Photo Essay. Retrieved November 24, 2017, from https://www.huffingtonpost.com/entry/photographer-captures-the-beauty-of-people-with-albinism-in-democratic-republic-of-congo_us_5769d0a5e4b065534f482bd7

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Richman-Abdu, K. (2017, July 06). Photographer Continues to Capture the Ethereal Beauty of People with Albinism. Retrieved November 30, 2017, from https://mymodernmet.com/yulia-taits-pocelain-beauty-albinism/

Skelly, Richard. “Edgar Winter | Biography & History.” AllMusic, 2017, www.allmusic.com/artist/edgar-winter-mn0000178536/biography.