Ayanika Society, in collaboration with Kochi Metro, launched the "Albinism Friendship Journey" to promote awareness and fostering a supportive environment for individuals with albinism.
Published Sep 11, 2024 | 7:00 AM ⚊ Updated Sep 11, 2024 | 7:00 AM
Albino individuals gathered at Kochi Metro for the "Albinism Friendship Travel" event.
Misconceptions are many. It ranges from a lack of exposure to sunlight to the devil replacing the child at birth.
The misconceptions often force those with albinism to sequester themselves indoors to avoid wagging tongues and questioning stares. Albinoid children often find themselves out in the hot sun, increasing the chances of skin cancer.
Society prefers othering albinos, mostly out of ignorance that the rare genetic condition was caused by the shortage or absence of melanin that determines the colour of the skin, hair, and eyes. This ignorance often leads to the othering of people with albinism.
Incidentally, the misconception is not confined to the layman. Consider this instance. During the scorching summer of 2019, Kerala Chief Minister Pinarayi Vijayan appealed to the public to provide water for birds and animals. In a Facebook post, he lauded the Department of Forest for setting up temporary water sources in the forest.
Even as the chief minister’s post was widely applauded for his concern for creatures other than humans, a small section of people in Kerala was reeling more under the merciless sun.
Sarath Thenumoola, an actor with albinism, pointed out to the chief minister that people like him were most vulnerable to the effects of climate change as they face severe physical and mental health issues. After Thenumoola’s intervention, the chief minister edited his Facebook post.
Speaking to South First, the actor urged that people with albinism, too, should be recognised “alongside birds and animals”.
The “Albinism Friendship Metro” was inaugurated by Loknath Behera, Managing Director of Kochi Metro Limited, and Dr MP Ram Navas, Director of Projects, Kochi Metro Rail Limited
Ayanika Society, in collaboration with Kochi Metro, launched the “Albinism Friendship Journey” on 6 September 2024.
The initiative, aimed at promoting awareness and fostering a supportive environment for individuals with albinism, began at 3 pm at the Jawaharlal Nehru International Stadium Metro Station.
“Albinism Friendship Metro” was inaugurated with a ribbon-cutting ceremony attended by Loknath Behera, Managing Director of Kochi Metro Limited, Dr MP Ram Navas, Director of Projects, Kochi Metro Rail Limited, and Sumi Natarajan, Joint General Manager of PR & Publicity among others.
Friends of albinism. Ayanika Vice President Anoop M Appu and members Parvwanendu, Mahesh PV, and Anand P, as well as numerous well-wishers, were also present.
Ayanika Society’s primary objective is to increase awareness about albinism, create a more inclusive community, and ensure the safety and well-being of individuals with the condition, especially during summer.
Set for the Friendship Journey
”We received a request from the albinism community, seeking a system that accommodates individuals with albinism on the Kochi Metro. In response, we are celebrating Albinism Awareness Week to educate the public about this condition,” Sumi Natarajan told South First.
“We have put up posters at metro stations in Kochi to promote albinism-friendly travel and are also circulating this information on our social media platforms,” she said.
The PR professional said free travel could not offered for individuals with albinism on Kochi Metro since certain regulations must be followed uniformly across the country.
“Given that individuals with albinism have special health needs, such as avoiding direct sunlight and extreme heat, the metro offers a suitable environment for their travel needs. This initiative is a first in India, and raising awareness about albinism is crucial as many people are not familiar with this condition,” she said.
Thenumoola, who has been advocating for the visibility of the community, shared with South First the myths and misconceptions that compel affected individuals to stay away from public glare.
He highlighted that albinism is surrounded by harmful and dangerous beliefs in various cultures. One particularly damaging myth is the false claim that having sex with someone with albinism can cure AIDS. This belief exposes individuals with albinism, especially women, to severe threats and exploitation.
Students holding posters spreading awareness on albinism at a Kochi Metro station.
In parts of Africa, there is a mistaken belief that albinism is a contagious disease, leading to social avoidance and discrimination out of a false fear of transmission through physical contact.
In East Africa, particularly Tanzania and Malawi, there is a dangerous superstition that the body parts of people with albinism could bring good luck, wealth, or health.
Witch doctors falsely assert that the bones, skin, or hair of people with albinism could be used in magical potions, resulting in horrific violence, including mutilations and murders, as perpetrators seek these body parts for ritualistic purposes.
Additionally, some communities mistakenly believe that the birth of a child with albinism indicates a supernatural curse or ancestral disapproval.
This misconception leads to severe social ostracism, with families often shunning or hiding their children with albinism due to shame or fear. Such beliefs contribute to the widespread stigma and psychological trauma experienced by individuals with albinism.
According to Thenumoola, the Kerala government lacks a clear strategy for addressing the needs of individuals with albinism. He said that the government does not maintain records on the number of people with albinism in the state, the number who have died, or how many require special care and support from government systems.
There is a pressing need for an albinism policy and an environment that accommodates those with the condition, he said.
People with albinism face significant challenges beyond just skin irritation from sun exposure. They experience problems like sudden pressure changes in their eyes, which can lead to fainting or heart attacks. Many also have less than 20 percent vision. The government’s inaction is compounded by a lack of social acceptance and understanding.
There needs to be greater public awareness about albinism to prevent harmful stereotypes and insensitive questions, such as whether a child with albinism might be from a foreign parent. Many families dealing with albinism remain silent due to fear of societal judgment,” he said.
Dr Sany Varghese, President of the Indian Association of Clinical Psychologists (Kerala Region), told South First that individuals with albinism face numerous challenges from childhood.
Many experience depression and anxiety due to persistent criticism and mockery from a young age. Dr Varghese noted that a significant concern within this community is the lack of social recognition.
Social Justice Minister R. Bindu and Health Minister Veena George said they need more time to respond to South First’s queries.
Thenumoola, who had approached both departments with various projects, reported that the Health Department and the Social Justice Department have been shifting responsibility, each blaming the other for failing to address the issues effectively.
(Edited by Majnu Babu).
(South First is now on WhatsApp and Telegram)
