Arya Alapati: Albinism/vision

88 percent of the human population believe vision to be the most important sense. But what about those who lack most of their vision? How do they navigate both socially and physically? (Evaluation whether sight is the most important sense, NIH)

First, though, a misconception: Not all people with albinism have severe vision issues.

Albinism does not always mean severe loss of vision; in fact, the vision of people with albinism is dependent on the type of albinism that they have inherited. OCA1 albinism, or “absence of melanin,” results in an individual lacking almost all pigment within their body. This often results in individuals who possess blue eyes that reflect a red color when in sunlight. This red color comes from the blood vessels shining through the iris. The diagnosis of OCA1 albinism, in turn, affects the vision of those who possess this variation.

The presence of other types of albinism such as OCA2 albinism, which does not result in the “absence of all melanin” typically results in the difference in the amount of vision present. According to orphanet, People with OCA2 type have vision from 20/60 - 20/100 with vision not worsening over time.

Another big misconception: Blindness is not a one size fits all definition.

This may come as a surprise, but being blind is not a single, unchanging shadow. Similar to how people with glasses have various prescriptions, people with blindness have different visions, too. Blindness is a spectrum. Being legally blind (20/200 vision or worse) does not mean you cannot see at all. In fact, 93 percent of people who are legally blind possess some sort of vision.

What other visual issues do people with albinism face?

Nystagmus is also very common with individuals who have albinism. Nystagmus is essentially involuntary movement in the eyes that causes rapid eye movement. Nystagmus is a neurological condition, and professionals have determined that this aspect may be due to abnormalities within the nucleus of the optic tract or visual pathways in the brain.

People with albinism also face issues with light sensitivity on a daily basis. Photosensitivity, or photophobia, for people with albinism also pertains to the lack of pigment in their eyes and presents worse in individuals with poorer vision. But, why does a lack of melanin result in photosensitivity? For most individuals, melanin plays a role in filtering out or catching excess light, so the light does not go through our iris to our retina. For people with albinism, this barrier is not present, which results in discomfort and pain.

Sensitivity to light is also present within people with lighter skin tones. People who possess lower levels of melanin within their skin tend to have larger issues with sunburn, skin cancer, and discomfort when staying in the sun. People with OCA1 albinism also face greater struggles than other individuals in these aspects, as well, due to their skin lacking most, if not all, pigment.

How accessible is life for people with albinism?

While people with albinism can face issues visually with seeing signs, bright lights, and navigation, some accessibility features have been developed to help them travel.

The greatest area of importance in navigation is driving. Poor vision makes it more challenging for people to see cars on the road, communicate, and stay safe.

Due to modern technology, however, some people with albinism do possess the opportunity to drive. Assistive technology, such as bioptic telescopes, allow for these individuals to have a clearer view of what is occurring on the road. Although they have to make certain adaptations, such as focusing more on surrounding noises, this technology demonstrates significant improvement in accommodating those with visual disabilities.

What are some visual preferences for people with albinism?

People with albinism tend to have a preference of accessibility when it comes to reading or viewing. Indeed, when reading, it becomes difficult to differentiate words from one another and the background. So, what will help people with albinism best in these situations?

It comes down to font, color, and size.

Size is pretty straightforward. Larger sized characters are much easier to see and therefore easier to read. With fonts, fancier typefaces are harder to read and understand for people with albinism because they can blur together. With color, contrast plays a vital role. People with albinism can better adapt to reading when contrast is present as the text pops more. Black font on white background, and vice versa, provide the biggest contrast and therefore are easiest to read.

Now that we’ve analyzed the physical aspects of vision on individuals with albinism, let us move on to the social implications:

How should we treat people with albinism?

Beyond the physical struggle, people with albinism often also face social stigmas, as well. People with albinism are not fragile; in fact, people with albinism come with strength that makes them able to navigate the world filled with certain expectations and standards.

Fear and uncertainty of how to navigate the world of blindness does not justify societal mistreatment of people with albinism:

We all fall victim to the mindset of judgment or assumptions. These presumptions become more prevalent when we analyze the form of the individuals around us.

As someone who has a close friend with albinism, initially I also had these assumptions –– not necessarily negative assumptions but assumptions that made me feel pity towards him. However, as I grew to know him more, I realized that oftentimes people who have disabilities do not want your pity, they want your understanding. They do not want to be defined by their condition but also want to be seen by the life they lead and the person they become.

With these presumptions comes the importance of being inclusive of everyone regardless of their appearance or disability. Let’s stop making people with albinism view their life as something unnatural and begin to understand their viewpoint in life. Stop the back-handed comments that we view as compliments or an attempt at understanding.

Scrolling through posts on albinism forums, I learned how many individuals with albinism face insecurities because of their appearance. Indeed, society initiated many of these insecurities. These insecurities often involve their eyesight, skin color, and overall appearance. Oftentimes, society views unnatural or uncommon aspects in a negative light, exchanging or demonstrating negative thoughts or ideas about people with disabilities in the process.

Encourage self-love, but understand that this feeling does not come easily for everyone. The classic saying “Love yourself” is not a one-step solution for people who are insecure to automatically implement, just as the insulting words thrown at these people are likely a repeated offense.

People with albinism cannot be trapped in one box with a step by step guide on interaction. Some individuals feel free to discuss their life, others do not. Frankly, society's understanding towards disabled people is rather unpleasant, with individuals judging one's physical appearance as a definition of who and what they are.

Discriminating against people with disabilities is unacceptable:

We have heard a lot about discrimination in society – the fight to bring equality to society – but many people have not heard of discrimination towards the disabled. This type of prejudice is referred to as ableism. Ableism is still heavily prevalent within society today with avoidance, mistreatment, and ignorance towards the disabled community. The steps towards prevention, or eventual eradication, of ableism are through bringing society awareness about people’s conditions and situations.

Although law does dictate that people cannot be discriminated against in work environments based on their physical capability that does not mean these rules are always followed in the workplace. This discrimination has led to unfair and unacceptable prejudices against people with disabilities, leading them to suffer in areas that promise to be inclusive towards them. With the awareness brought from a community of people we all can play a role in dismantling this discrimination –– one step at a time.

About the Author:

Arya is a senior at Innovation Academy who has a heavy interest in all things medical. She has been involved in organizations like HOSA and has an interest in medical writing. She currently leads a club dedicated to writing and has focused her leadership in NHS in making a positive impact to awareness for the general community.