Mashawna Thompson’s daughter, Lyra, came into the world with usually pale skin and a full head of nearly-transparent hair. By all measures, she was beautiful. But then Mashawna experienced that moment that all new parents feared–the doctors suspected that something was “wrong.” Ultimately, baby Lyra was diagnosed with albinism.
Many people are unfamiliar with the term “albinism,” but nearly everyone has heard of “albinos.” And that is only the tip of the iceberg of misunderstandings.
While Lyra, who is now a thriving 9-year-old, has some physical challenges due to her condition — she has poor eyesight, light sensitivity, and sensitive skin — the greatest obstacle that this family has faced has been the plethora of misunderstandings that people have about albinism.
According to Mashawna, who blogs at Parent of a Child With Albinism, “It really bothers me when people just stare, which happens A LOT. Fortunately, most of the time Lyra can’t see well enough to see them staring at her, so it doesn’t bother her as much. I would much rather people ASK about it than just stare.”
She even had a t-shirt made for Lyra that says “I was born with it” on the front and “Yes, it’s real” on the back. “By far, the most common question we hear is ‘Is that her real hair color?’ ” explains Mashawna.
In addition to stares and questions about Lyra’s hair color, Mashawna has observed the negative stereotypes in the media and the dehumanizing connotations associated with the term “albino.” Mashawna says that, “On a few occasions, other kids have called Lyra a vampire or said ‘Are you a vampire?'”
Recently, Judy Silny wrote an article about the unique challenges faced by people who have ADD. She emphasized that understanding a person’s challenges can help you to be more patient, compassionate, and tolerant.
Unfortunately, Mashawna’s family’s experiences are common, and albinism is at least as misunderstood as ADD, and loving a person with this condition does require you to understand the challenges that they face due to their albinism. Here are some things to remember if you love a person with albinism:
1. They wish that you would be careful about using the term “albino.”
According to an informational bulletin published by the National Organization for Albinism and Hypopigmentation (NOAH), the use of the term “albino” is offensive to some people with albanism. Referring to these people as “albino” increases separation and stigmatization.
When you refer to them as “people with albinism,” that empahsizes the fact that they are people first and that their condition does not define them. According to Mashawna, “I don’t like hearing ‘Is she albino?’ But it doesn’t bother me as much as it used to. I understand that this is the term that most people are familiar with, but the word has so often been used in an inaccurate and/or insulting way by society and in media, that we prefer not to use it.”
But you also should not automatically dismiss this term. According to an article on Vis-Ability Stories, many people with albinism are embracing the word “albino” as a source of pride and identity. So follow your loved one’s cues, and refer to their condition in the way that they are most comfortable.
2. They want you to know that albinism is not necessarily a disability.
According to NOAH, albinism is not considered a disability under the Americans with Disabilities Act, because it does not always cause significant limitations in the activities of people who have it. While some people with albinism do have disabilities, such as visual impairment, albinism itself is not considered to be a disability.
3. They do, however, have many experiences similar to those who have disabilities.
NOAH states that people with albinism are a unique group and often do feel isolated from people who do not have albinism. Albinism is a part of their identity, and they are often met with prejudice and misunderstanding about their condition. People with albinism have many of the same social challenges as people with disabilities.
4. They want you to know that people of all races can have albinism.
Albinism does not only affect families with light skin, according to NOAH. This condition can be especially challenging for African-Americans and people who belong to darker-skinned races. Albinism can cause these people to experience difficulty with their racial identities and lead to struggles to “fit in” with other people of their culture.
5. They also want you to realize that albinism is not an illness.
According to Every Child Ministries (ECM), albinism is not a sickness or a disease. It is a genetic condition inherited from both parents, even if the parents do not have albinism. Take care to treat a loved one with albinism as if they are healthy–because they are!
6. They can lead “normal” lives.
ECM states that people with albinism can expect to have a normal lifespan and lead lives without any limitations due to their condition. They do not have any type of mental impairment, and they can expect to achieve the same goals as their peers who do not have albinism.
7. They often have eyes that are sensitive to light.
Wearing sunglasses is a must. People with albinism have light-sensitive eyes that can feel a painful, burning sensation in the sun, according to ECM. They need to take extra precautions in order to protect their eyes. Mashawna states, “Sunglasses AND a hat are a must! Also sometimes even indoor lights can be a problem especially florescent lighting. They put shades over the light fixtures in Lyra’s school classrooms. Also, overall visual acuity is impacted by the amount of light.”
8. They also have sensitive skin.
According to ECM, people with albinism have skin that burns easily in the sun, and they often get sores on their skin and lips, due to its sensitivity. There is also an increased risk of skin cancer in people with albinism. Staying out of the sun during the hottest times of the day, and wearing sunblock and protective clothing can help minimize skin issues.
According to Mashawna, “…one advantage specific to albinism that I can think of would be that it forced everyone in our family to pay better attention to and stress the importance of sun protection.”
9. They want you to know that there are different types of albinism.
According to Kids’ Health, different people are affected differently by albinism. Some people have pale skin and hair, while others only have eyes that are affected. The eyes of a person with albinism may be red or pink, or they may be brown or blue. Some people with albinism have visual impairment, while others do not. It is important to realize that if you know one person with albinism, you know one person with albinism.
10. They may have visual impairments.
The visual impairments that people experience with albinism can vary. Kids Health states that many people with albinism are near-sighted, far-sighted or have other visual impairments.
Some visual problems can be corrected with glasses or contacts, some require surgery, and some can not be corrected at all.
It is important to realize that a lot of people with albinism try to hide their visual impairments, because they want to fit in with everyone else.
This has been the greatest challenge that Lyra has faced. She has poor depth perception and difficulty reading social cues, due to her limited vision.
According to Mashawna, “Lyra is pretty smart and quick to memorize her environment so she can be a pretty good ‘faker’ especially in familiar places…But then those moments when she DOES struggle visually, tripping on a step, getting too close to a person when talking or holding a book an inch away from her face, if to people who don’t know she has low vision, she just looks weird.”
11. They want you to know that some types of albinism are associated with more severe health issues.
According to the American Association for Pediatric Ophthalmology and Strabismus, two rare forms of albinism are associated with other health issues. People with Hermansky-Pudlak Syndrome (HPS) often have more bleeding and bruising, as well as bowel and lung disease in some cases. Chédiak-Higashi syndrome causes increased risk of infections, anemia, and enlarged liver.
Learning about your loved one’s albinism can help both of you to face this challenge together. Mashawna states that, ” I think one advantage of having a child with albinism would be the way it changes you. It has forced us to have more patience overall. It has given us more awareness and tolerance for people with differences or disabilities. It’s taught us to be more compassionate.”
As you grow in your understanding of your loved one with albinism, you may be surprised by the ignorance and misconceptions that people have about this condition. Perhaps the best way to support your loved one is to spread the word and correct the misinformation that you hear. Spreading understanding is spreading love!
To help spread understanding, you may want to start by sharing this video that Mashawna created.
Featured photo credit: Mashawna Thompson, http://parentofachildwithalbinism.com via parentofachildwithalbinism.com