Interview with an Albinism Advocate

by Jessica Minneci

Cassandra with her guide dog Romana
             Walking around the Ohio State campus, Cassandra Mendez is known for her trendy clothes, dark sunglasses, and her fluffy yellow Labrador guide dog Romana. When she's not working toward her degree in computer science and engineering, Cassandra educates others about her visual impairment and rare form of albinism, hermansky-pudlak syndrome (HPS), which affects 1 in every 500,000 to 1 million people worldwide.
            For those who don't know, albinism is the lack of pigment in the hair, skin, and eyes. People with albinism have fair skin susceptible to sunburn. Their hair is light, ranging from white to dark blonde. The lenses of their eyes are not pigmented, making it harder and often painful for them to filter light. This is called light-sensitivity. Some people with albinism, like Cassandra, are visually impaired from birth as “the optic nerve in the eye crosses with the brain.” The amount of lighting in the room can change, making Cassandra's vision fluctuate. The brighter the room, the less she can see. Along with a lack of depth perception and having nystagmus, involuntary eye movement, Cassandra has a hard time recognizing faces. Luckily, she has a full field of peripheral vision and can read large print.
There are many misconceptions about albinism. Here are three stereotypes that Cassandra wants to dispell:
  • People with Albinism do not have red eyes. They sometimes look like they have red eyes because the light shines through them, revealing their retinas. Depending on the light the color can range from pink to gray to blue and to purple.
  • There is a misconception that people with albinism are angry based on their facial expressions, like scrunching up their eyes. In reality, they are probably just squinting, trying to see through bright light.
  • Many but not all people with albinism have a visual impairment. Misconceptions abound as some people with albinism don’t carry identifiers of their visual impairment, and instead compensate for what they can't see by memorizing shapes, the words on signs, and nearby surroundings. Others prefer to use guide dogs or white canes. For these reasons the general public is often confused, believing all people with albinism are either totally blind or fully sighted. Don’t assume. The truth is you won’t know unless you ask.

Cassandra said, "We're capable, but if we're asking for help, we need it. Don't doubt people's capability because they will always surprise you." Also, just because some people with albinism can't see well doesn't mean that they can't drive. In some states, with the proper assistive technology, people albinism are able to drive.

      Every disability throws challenges your way, which is why connecting with others going through similar situations is very important. Cassandra recommends attending the National Organization for Albinism and Hypo Pigmentation (NOAH) conference, which occurs every even-numbered year in a different location. Cassandra began going to the conferences in 2010 when she was 13. Before then, she had never met other people with albinism. She commented, "You don't realize how much you want people to understand you until they do. You feel really validated especially when you're a teenager and trying to figure out who you are in the world." Held in D. C., she joined the NOAH teen program and was given the opportunity to explore the city's museums and landmarks. For adults, there were sessions on how to disclose your disability to a future employer and how to use public transit to get to and from work. Cassandra spoke at a panel for parents about the best ways to prepare your kid for college. To young visually impaired kids, Cassandra advised, "Try everything you want to try. Tell people what you need. Start being involved in your own life and take charge of it so that you can be independent and do what you want to do."
            Cassandra also has a recommendation for people like her with HPS, a national conference held every year in March. While she says NOAH is more of a networking event, the HPS conference focuses primarily on research about the syndrome and supporting one another.
            Everyone should learn what albinism is and the challenges that come along with it. Cassandra serves as a reminder that everyone, although they may be different, has a story to tell and advice to give others. Celebrate this unique group of people today during Albinism Awareness Day.

Read more of Cassandra's story by clicking the links below.

 Cassandra wrote and proofread for Albinism InSight from 2012-2015 which is the quarterly magazine for the National Organization for Albinism and Hypopigmentation.

Jessica Minneci is a  marketing associate at APH. 
A creative writing major in college, she is a free verse poet and aspiring
novelist who enjoys spending time with her guide dog Joyce.


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