Shining light on albinism: Challenges, discrimination, and the path to awareness and support

I believe it’s a common human tendency to gaze at those who appear different from us, whether it’s due to beauty, complexion, height, weight, or attire. When we encounter something admirable, we often wish, even momentarily, to possess similar qualities, be it in appearance, personality, or attire. However, our reactions vary when we encounter individuals […]

I believe it’s a common human tendency to gaze at those who appear different from us, whether it’s due to beauty, complexion, height, weight, or attire. When we encounter something admirable, we often wish, even momentarily, to possess similar qualities, be it in appearance, personality, or attire. However, our reactions vary when we encounter individuals with physical or mental differences. Some may feel discomfort or fear, leading them to avoid acknowledging these differences, while others may simply overlook them.

Conversely, there are instances where empathy prevails, prompting us to extend compassion not only to the individuals themselves but also to their families.

Today, I am going to discuss a condition often caused by a lack of melanin in the skin, hair and eyes: albinism. Every year, on the 7th of April, World Health Day is celebrated. The World Health Organization (WHO) designates a specific theme for each year’s celebration, and for this year, they have chosen the theme “My health, My Right”. Therefore, I have decided to write about albinism to raise awareness about it and its impact on individuals’ health.

Albinism is indeed a hereditary condition characterized by light skin, hair, and eyes due to reduced melanin production in the body. Melanin is crucial for skin, hair, and eye coloration.

Despite generally good health, individuals with albinism often face vision impairments, including reduced visual acuity, nystagmus, and light sensitivity. Consequently, most people with albinism are visually impaired and have an increased risk of skin cancer.

Even albinism encompasses various types categorized by inheritance patterns and specific genetic mutations. The most common form, Oculocutaneous albinism (OCA), occurs when an individual inherits two altered genes, one from each parent, following an autosomal recessive pattern. OCA is associated with eight known genes (OCA1 to OCA8), resulting in reduced pigment in the skin, hair, and eyes, alongside vision impairments. Ocular albinism predominantly affects the eyes, particularly type 1, inherited through a mutation on the X chromosome, typically passed from carrier mothers to sons, following an X-linked recessive pattern. Albinism can also manifest within rare hereditary syndromes like Hermansky-Pudlak syndrome, featuring OCA alongside bleeding tendencies and lung and bowel disorders, and Chediak-Higashi syndrome, presenting OCA with immune deficiencies, neurological complications, bleeding disorders, and other severe conditions.

Unfortunately, discrimination against individuals with albinism persists in societies worldwide. Despite declarations and laws promoting equality, such as the Universal Declaration of Human Rights and the Indian Constitution, discrimination against those with albinism remains prevalent. For instance, the Pullan family from North Delhi’s Wazirpur, originally from South India, has faced discrimination due to their albinism. They are often referred to as ‘Suraj-mukhi’ or ‘Angrez’ (British) because of their pale skin.

In many cultures, fair skin is associated with beauty, while darker skin is stigmatized.

However, for individuals with albinism, their fair skin poses health risks and societal challenges. This disparity highlights the failure of society to embrace diversity and uphold the principles of equality and dignity for all individuals, regardless of their appearance or medical condition. Regarding albinism, many individuals may not consider themselves disabled in the traditional sense, as they are generally healthy in terms of physical and mental well-being. However, what aligns them with other disabilities is the vision impairment associated with the condition. Albinos commonly experience visual issues, which can significantly impact their daily lives. It’s important for others to understand that due to these vision problems, individuals with albinism may face limitations in activities such as studying. For instance, they may only be able to study for short periods, typically 2-3 hours a day, as prolonged reading or screen time can cause discomfort and eye strain.

Even tasks as basic as reading from a mobile device can pose challenges for them.

Therefore, it’s crucial for society to recognize and accommodate the unique needs of individuals with albinism, particularly in terms of access to education and technology, to ensure they can fully participate and thrive in various aspects of life. Every albino is different in terms of their eyes vision issues. There is a case from J&K where an albino boy is declared 60% disabled. Even the United Nations General Assembly passed a resolution on December 18, 2014, observing June 13th as International Albinism Awareness Day just to create awareness related to it. But still in 21st century people are not much aware of this medical conditions.

Jeevan Trust, an NGO founded by Anubhav Gupta, is dedicated to addressing the various challenges faced by individuals with albinism. Alongside, several other NGOs are actively working towards the betterment of albino individuals. Although the Rights of Persons with Disabilities Act, 2016, of India does not explicitly recognize albinism as a disability, it does acknowledge vision impairment, including blindness and low vision, as disabilities. It is essential to highlight that the government can extend support to individuals with albinism by offering free medical health check-ups for their eyes and skin. Children with albinism often require specialized visual aids to manage their specific visual impairments, such as glasses, contact lenses, monoculars, or large print materials. These aids are crucial in enabling them to navigate daily activities and education effectively.

Therefore, it is imperative for the government to provide necessary assistance to ensure that individuals with albinism can lead fulfilling lives without discrimination. Creating awareness about the challenges faced by albino individuals is paramount to fostering understanding and support within society. The government should train teachers and faculty of schools, colleges, and universities to provide quality education to albino students so that they do not face any kind of discrimination. Teachers and faculty may provide attendance relaxation to albino students as traveling in sunny weather may cause skin irritation and other skin issues as they are prone to skin cancer. Thus, it is important to train teachers so that they are aware of the health issues related to albinism and can act as a medium for albino students to create a safe and secure environment where they do not face any kind of discrimination.

Dr. Pyali Chatterjee is HOD, Faculty of Law, ICFAI University, Raipur Chhattisgarh