More than skin deep: understanding albinism in the Indian context

The Hindu

7 hours ago

In India's image-conscious society, individuals with albinism often find themselves both hyper-visible and marginalised. With their pale skin, light or colorless hair, and light-sensitive eyes, they attract attention simply for what they look like. Yet albinism is not just a cosmetic variation—it is a genetic condition with significant health, psychological, and social dimensions.
With International Albinism Awareness Day observed on June 13, it is vital to move beyond superfluous sympathy and engage with the deeper realities that people with albinism face in India.
What is albinism?
Albinism is a non-contagious, rare inherited genetic condition characterised by the partial or complete absence of melanin—the pigment that determines the colour of the skin, hair, and eyes. The most common types include:
Oculocutaneous Albinism (OCA): This affects the skin, hair, and eyes, with seven known subtypes (OCA1 to OCA7).
Ocular Albinism (OA): This primarily affects the eyes, with minimal or no changes in skin or hair colour. It is usually X-linked (carried on the X-chromosome) and occurs more commonly in males as they have one X-chromosome and one Y-chromosome. This allows the trait to be freely expressed in the affected individual, in the absence of a second X-chromosome.
Globally, the prevalence of albinism ranges from one in 20,000 to one in 40,000 people. In Africa, certain populations exhibit much higher rates of prevalence —up to one in 1,000. India lacks comprehensive epidemiological data, but experts estimate that there may be around 1,00,000 people with albinism in the country— however, much of their information remains undocumented.
The biology behind albinism
Melanin plays a crucial role not only in pigmentation but also in eye development and function. A lack of adequate melanin can manifest as: nystagmus (involuntary eye movements); strabismus (misaligned eyes); photophobia (extreme light sensitivity) and reduced visual acuity, often falling under legal blindness.
These visual impairments can severely limit educational and employment opportunities, particularly in environments that lack accommodation or awareness.
Moreover, melanin acts as a natural barrier against UV radiation. In its absence, individuals with albinism are highly prone to sunburn, freckles, and skin cancers—particularly squamous cell carcinoma and melanoma. In India's tropical climate, with its proximity to the Equator, this risk is exacerbated.
Stories from the ground: realities in India
Albinism affects a considerable portion of the Indian population, and is a part of the social landscape. The lived experiences of individuals with albinism highlight the urgent need for both systemic and social change.
The Goswami sisters of Kolkata, Gayatri and Swati, have spent much of their lives in seclusion. Their story, captured by photographer Debsuddha Banerjee, reveals a childhood marked by school bullying and adult lives dominated by isolation during festivals and public events.
In Assam, Bulbul Ali, a cloth merchant, was barred from entering his village during the COVID-19 pandemic because neighbours believed his light skin indicated that he was a foreigner—and potentially a virus carrier.
Tanush Soni, a young debater and MUN delegate from Maharashtra, was called a 'ghost' as a child. Today, he is a national-level speaker preparing to study international law, using his story to advocate for children with albinism.
The Jeevan Trust, founded in Delhi by Sameer Garg and Anubhav Gupta, supports families with multiple members living with albinism. Sameer, who is himself visually impaired due to albinism, recounts being unfairly accused of cheating in school because he couldn't read the blackboard.
These narratives reflect not only resilience, but the deep structural barriers that people with albinism continue to face in everyday lives and in the basic functioning of their daily activities—from educational neglect to social prejudice.
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The weight of myths and misconceptions
Albinism is surrounded by deeply ingrained myths across cultures. In parts of East Africa, it has tragically led to violent persecution, with beliefs that body parts of individuals with albinism possess magical powers.
While India does not report such extreme violence, the social stigma is quietly pervasive: many wrongly believe albinism is contagious; children are subjected to bullying and labelled as 'foreigners'; adults struggle to find suitable employment due to visual impairment and prejudice; families may feel shame or confusion when a child with albinism is born, especially in communities where darker skin tones predominate.
Policy gaps and the need for action
Despite these challenges, India lacks a targeted national programme for albinism. There is no unified framework that guarantees: medical support including access to sunscreen, sunglasses, and regular skin and eye check-ups; educational adjustments such as large-print books, adaptive seating, and visual aids; legal clarity under the Rights of Persons with Disabilities Act, which does not explicitly list albinism, despite its visual implications; public health campaigns to counter myths and encourage sun safety.
Organisations like the Indian Albinism Foundation and Jeevan Trust are filling some of these gaps, but the scale of implementation of any initiative remains a challenge without policy-level intervention.
Beyond awareness to action
Albinism is not a cosmetic aberration—it is a genetic condition with real medical and social consequences. This International Albinism Awareness Day, India must go beyond fleeting awareness and commit to systemic change.
This includes f:ormal recognition of albinism under disability law; training teachers to support visually impaired students; making sunscreen and UV-protective gear affordable and accessible; promoting media representation that normalises, rather than sensationalises albinism as well as supporting employment inclusion and workplace accommodations.
The lived realities of the Goswami sisters, Tanush Soni, Bulbul Ali and many others are proof that social barriers are all too common. And in a society that prides itself on diversity, inclusion must begin with visibility—and lead to dignity.
(Dr. Arunima Ray is a consultant in dermatology & dermasurgeon, Narayana Hospital RN Tagore Hospital, Kolkata. [e-mail])