Marleena Barber is a singer and actress with albinism. She is an active member of National Organization of Albinism and Hypopigmentation (NOAH.) Barber has participated in and led many musical, film and theatre performances. As a disability rights advocate, Barber encourages others to learn music, accept themselves as they are and grow by cultivating their strengths. Barber has a BA in Music from Whittier College. She is currently pursuing a Master’s degree in Nonprofit Arts Management at University of Denver.
Image courtesy Nuvea Photography
Interview of January 7, 2019
Alexandra Wang: What is albinism?
Marleena Barber: Albinism is a genetic condition, which affects the pigmentation in the eyes, hair and skin, and causes sensitivity to sunlight. Sometimes albinism only affects the person’s eyes.
Albinism always results in low vision. Oculocutaneous Albinism and Ocular Albinism are the most common types of the condition. It affects everyone differently. Some people can see better than others.
All ethnicities and races have members with albinism. One out of 17,000 people have albinism in the United States. Albinism seems to be more common in Africa.
Image courtesy Positive Special Needs Parenting
Alexandra Wang: What were your early experiences with albinism?
Marleena Barber: I was born in 1981. Despite my appearance at birth, it did not occur to anyone that I had albinism. Shortly after bringing me home from the hospital, my mother noticed my eyes were not tracking correctly. My eyes were not following or looking towards my toys and they were moving involuntarily. My pediatrician told my parents that he suspected I had albinism, and referred them to a specialist. He himself had never encountered anyone with albinism.
Alexandra Wang: What finally led to the albinism diagnosis?
Marleena Barber: When I was 9 months old, I was diagnosed with albinism after I had a hair bulb test. There was not much information on albinism at the time. My parents did not know what it was or anyone else who had the condition until my brother was born. We could only relate to each other. Since albinism is genetic, we know there must be people with albinism along the family line, but not for at least a few generations.
I had a few optometrists who had never had a patient with albinism before, despite being trained in its diagnosis and pathology. This is common in the medical community. They were very curious when they saw me. They would spend a long time examining my eyes.
Alexandra Wang: What were beliefs and attitudes about albinism in your childhood community?
Marleena Barber: I grew up in a small town in Southern Maine. My early childhood was challenging. My brother and I were teased a lot because of our appearance. Most people did not understand our condition. I had curly white hair, and wore big, oversized and thick glasses. I was called names, such as “White-Out,” “Q-Tip,” “Granny,” and “Old Lady.” It was hurtful.
In 4th grade, I was introduced to using a white cane. I also used magnifiers and other visual aids, such as a Closed Circuit Television (CCTV), so that I could see images better. My peers started calling me “Blind Girl” and “Albino.” This was especially tough from 4th to 6th grade, because all of these aids brought unwanted attention. I suspect much of this was the result of fear. People are afraid of what they do not understand.
Image courtesy Braille Works
Alexandra Wang: How about in middle and high school? How about college and later?
Marleena Barber: My music teacher told my parents that I should audition for a school talent show. I sang “The Greatest Love of All,” a song by Whitney Houston who was my favorite singer at the time. I always loved music. I learned how to play the piano and dance, when I was only three years old. However, this experience made me feel different. This song reflected my situation. It is about accepting and loving yourself. It had a powerful message that spoke to everyone. I remember it had a long note at the end and everyone stood up for me.
This was the moment when I learned what I was good at. Later, I sang the national anthem at games for my school’s sports teams and began to sing more in the community. Singing became a big part of my identity and it gave me confidence. It also shifted my peers’ attention away from focusing on my disability and recognizing my abilities instead.
Video of Whitney Houston’s Song
Video courtesy Whitney Houston
I feel very fortunate to have had a lot of supportive mentors and teachers growing up, but I also encountered a few who were discouraging. I had one teacher who told me, I would not do well in performing because of my appearance. Interesting enough, others believed that my unique appearance would help me. As I grew older, I realized that show business is a tough business. Everyone is going to have an opinion, and it was up to me to decide whether I found those opinions valuable.
Alexandra Wang: Did things change for you as an adult?
Marleena Barber: I became involved with the National Organization of Albinism and Hypopigmentation (NOAH. ) a few years after I graduated from college. Because my family received newsletters in the mail from NOAH, I always knew this organization existed.
I did not become involved, however, until I befriended another woman with albinism. She was the first person that I met with albinism other than my brother. It was special, because I finally had somebody else I could relate to.
I started attending NOAH events and conferences. It was an amazing experience, because I met people who shared similar experiences.
Image courtesy NOAH
Alexandra Wang: Tell me the positive and the negative about the way albinism impacts your life as an adult.
Marleena Barber: I still use a white cane. Many people with albinism wear strong contact lenses and bioptic lens. Because of my vision issues, I need more time to read. I do not drive, so I live in a neighborhood where I can get everything I need for daily living. My husband drives when it is necessary.
I am also a member of FaceBook groups for people with albinism, such as one group for parents with albinism, called Parents Without Pigment. We support each other by sharing experiences.
I still hear misconceptions about albinism. There is a belief that people with albinism have pink eyes. Our eyes look pink, because our irises do not have pigment in them so blood vessels are visible. Most people with albinism really have pale blue eyes which sometimes look violet.
Alexandra Wang: Are these beliefs influenced by the media?
Marleena Barber: People with albinism are portrayed as evil or magical beings in movies. Ghosts are always portrayed as pale beings in movies, so, when I was a child, many of my peers called me names, such as “Ghost” and “Casper.” I grew up with the movie, Powder. The protagonist, Jeremy “Powder” Reed has albinism and superpowers. That was the only character who had albinism that I was aware of. There were not characters or role models with albinism from either fiction or nonfiction.
Image courtesy IMDb
Alexandra Wang: How do you incorporate albinism in your music and performances?
Marleena Barber: Music has allowed me to accept myself. I love singing a variety of styles. I have a one woman cabaret show, called Thank You For The Music, in which, I share my experiences with albinism with the audience.
Marleena singing Thank You For The Music at a NOAH event.
Image courtesy Marleena Barber.
Alexandra Wang: There have been reports of children associating light hair with Elsa from Frozen. How has this affected people with albinism?
Marleena Barber: Since the movie Frozen was released, many children seem to be more comfortable seeing people with albinism because they associate light hair with Elsa. I have experienced this myself. I tend to wear my hair in a braid from time to time, and it is common children will tell me that I look like Elsa. I live near Disneyland, and have auditioned to portray Elsa on stage there. Unfortunately, I have not yet landed the role, but I love the movie and Elsa’s song so much that I recorded a video of myself singing, Let It Go!
Image courtesy Marleena Barber
Alexandra Wang: Tell me about your other performances?
Marleena Barber: Most recently, I had the opportunity to be an extra in Bird Box. The director made a great effort to include actors and actresses who are blind or have visual impairments for this film. This is one of the few films that has a person with albinism.
Blindness is portrayed positively in this film. It saves people from the apocalypse. At the same time, challenges of blindness are addressed as well.
Images courtesy Netflix
Alexandra Wang: Is there any recent portrayal of albinism that has impacted society’s impression of albinism?
Marleena Barber: In Phineas Taylor (P.T.) Barnum’s time, albinism was regarded as a condition that was exotic. He had performers with albinism who were twins and the characters were featured in the film, The Greatest Showman. Their names were Florence and Mary Martin.
This is an important part of albinism history. It was disappointing to discover that the actresses who played the twins did not have albinism. They had an actor with dwarfism portray the part of a performer who had that condition. They could have done the same with performers with albinism. It would have been more authentic. It is possible that they did not do a thorough search to find a performer with albinism. It is a shame that they did not reach out to NOAH. I had the privilege of composing a choir of people with albinism and performed This Is Me, from The Greatest Showman, at the 2018 NOAH Conference in Kansas City. We received a very positive response.
Image courtesy IMBd Image saved by Wendy Begley on Pinterest
Alexandra Wang: How does music help people with albinism?
Marlena Barber: Music is a universal language. Everyone connects to music in a different way. It can be very therapeutic. Music gives people freedom. It lets people express themselves. I was a choir teacher for Braille Institute for 11 years. All of my students were blind or had some degree of visual impairments.
I wanted to help others with visual impairments develop their talents in music. I worked with students who had all kinds of disabilities. Some of them had autism. Some had emotional disabilities that made them “blocked.” Some had learning disabilities, while others were developmentally delayed. We had wonderful performances, such as Aladdin Kids and The Little Mermaid Junior. Music was what brought everyone together. It was transformative. It helped the students come out of their shells. I had similar experiences with Very Special Arts (VSA.)
Alexandra Wang: Can you speak about your experiences as a music teacher for the Braille Institute?
Marleena Barber: It was a very rewarding experience. I enjoyed teaching students to learn to love music and participate in music. I was told that it helped students to have a teacher who had a visual impairment. In addition to being supportive, students could relate to me more easily.
Many parents told me that they saw me as a role model for their children. It was important for them to see an adult with a visual impairment who has completed college, and has a career and family.
Image courtesy Ideal Thesis
Alexandra Wang: What can school counselors, teachers, and social workers do to support students with albinism?
Marleena Barber: I would encourage them to be open-minded, creative, and encouraging. They should treat students with albinism the same way as they treat everyone else.
They should also introduce students to career opportunities. It is unfortunate that the drama teacher whom I had in high school did not take the time to help me. He should have helped me figure out what would work, instead of making assumptions about how my appearance would go against me. I witnessed children go through similar experiences at The Braille Institute. The rehabilitation counselors told students that their options were limited, because they were blind or visually impaired. I witnessed one counselor, in particular, tell a student that he could only be a call operator for a hotel. This is not true. The rehabilitation counselor should have asked the student about his interests and help him figure out how to pursue them.
One of my students at the Braille Institute wanted to become a basketball player. He was, however, discouraged because he was blind. This is wrong. In fact, he had many options. For example, he could have become a coach or studied sports medicine.
Alexandra Wang: What would your advice be for people with albinism overall?
Marleena Barber: Stay positive. Do not let anyone make you ashamed of having albinism. Follow your dreams. Try everything.
As a performer with albinism, I say, “Be yourself.” Understand what you need and do not be afraid to advocate for yourself. It is very hard to navigate around the stage when it is dark. To navigate better, I asked staff to put strips of glow tape on parts of the stage. Do not be discouraged, if you are rejected for a part. There is always a way to make your dreams come true. You just have to be creative.
Alexandra Wang: What can be done to support people with albinism in general?
Marleena Barber: It goes back to the old saying, “Never judge a book by its cover.” Just because someone looks different does not mean that there is something wrong with him or her. Give people with albinism a chance. Treat us just like you would anyone else. There also needs to be more general awareness about the condition. I would love to see albinism represented authentically in TV and films. We should use these platforms as an opportunity to educate audiences.
Update: Barber graduated from her master’s program, in Nonprofit Arts Management at University of Denver in summer 2019.
Image courtesy NOAH
Copyright 2019 by Alexandra Wang. All rights reserved.