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In Photos: Two Delhi Boys Are Battling A Rare Disorder That Makes Them Look ‘Foreign’

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By Swati Verma:

It was in the winter of 2005 that I first saw Suraj. With his almost translucent skin, hair as white as freshly fallen snow and a curious absence of colour from his skin; it was hard to believe he wasn’t a doll. That day in the hands of a visibly ‘dark’ vegetable vendor we had grown up calling “Virender Uncle”, I saw him; an albino baby. He had come over to seek medical help in our colony meant for government doctors.

The case of albinism in India is a curious one. In a country obsessed with fair skin we see an inapposite reaction to people with this condition. Albinism is an extremely rare condition with about 100 thousand to 200 thousand such cases in India. It often renders such individuals hypersensitive to sun rays besides making their appearance look ‘foreign’.

Albinism in humans (from the Latin albus, ‘white’) is a congenital disorder characterised by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of tyrosinase, a copper-containing enzyme involved in the production of melanin.

Due to their ethereal appearance, people with albinism have been mistreated for centuries. They’ve been perceived as mythical beings in countries like Tanzania, and witch-doctors have murdered them for their body parts, believing them to have magical properties. There have also been cases of albino women being raped in Zimbabwe, because of a false theory that sex with them can cure a man of HIV.

‘Children of the Moon’ is a story of two albinos. Faizan and Suraj are inadvertently similar to each other in appearance but there are miles of difference in their condition; both physically and psychologically.

Faizan comes from a business family living in Delhi’s Sadar Bazaar with seven brothers and his parents. Currently studying in Jamia University to become a physiotherapist; he has a really outgoing personality.

He does not fit the stereotypical image of an albino at all, if at all there is one. Faizan is the class representative of his batch and is surrounded by people perpetually. The ability to understand his body and the timely intervention of his parents has helped him tremendously to reach where he is today – the first person of his family to take up higher studies.

However, Faizan is an exception in a sea of albino kids born to relatively poor families. With no dedicated NGO’s to help families and members of albinos in the national capital region itself, one can only imagine the condition in the other parts of the country. Quite a few times the obvious difference in appearance alienates the albino kid from the family and the community. In cases where the causes of albinism are unknown, there are cases of people giving in to superstition and myths to find a ‘cure’ for something that is purely a genetic trait – and not a disease.

Suraj (11) is a son of a vegetable vendor living near Azadpur, Delhi. An uncannily shy boy for his age, Suraj often stays indoors in his two storey home.

Suraj (11) is a son of a vegetable vendor living near Azadpur, Delhi. An uncannily shy boy for his age, Suraj often stays indoors in his two storey home.

Suraj watching 'Doraemon' post lunch with his brothers as his mother engages herself with household chores.

Suraj watching ‘Doraemon’ post lunch with his brothers as his mother engages herself with household chores.

"Time spent away from home in hostels has perhaps toughened me." Faizan (22) remains unfazed by the stares he encounters on his way to his home on the busy Sadar Bazaar lanes of Old Delhi.

“Time spent away from home in hostels has perhaps toughened me.” Faizan (22) remains unfazed by the stares he encounters on his way to his home on the busy Sadar Bazaar lanes of Old Delhi.

Suraj is extremely sensitive to sunlight. In an ironic twist of fate he was named after the very thing which has the potential to give him skin cancer - the Sun.

Suraj is extremely sensitive to sunlight. In an ironic twist of fate he was named after the very thing which has the potential to give him skin cancer – the Sun.

"Once I was at this monument and the security guard insisted that I pay a foreigner's entry fee. Even my ID card couldn't get him to believe me."

“Once I was at this monument and the security guard insisted that I pay a foreigner’s entry fee. Even my ID card couldn’t get him to believe me.”

"I do not like wearing glasses," Suraj's bloodshot red pupils are indicative of the severe damage they have suffered due to lack of proper care. The red colour is due the blood clots.

I do not like wearing glasses,” Suraj’s bloodshot red pupils are indicative of the severe damage they have suffered due to lack of proper care. The red colour is due the blood clots.

"We have accepted him as God's gift. I do not know why he looks like that," says Suraj's mother. Lack of knowledge has led people to fall for superstitions rather than undergoing treatment and taking preventive measures.

“We have accepted him as God’s gift. I do not know why he looks like that,” says Suraj’s mother. Lack of knowledge has led people to fall for superstitions rather than undergoing treatment and taking preventive measures.

"My studies in biological science have definitely helped me understand my condition better." Faizan is currently studying at Jamia University to become a physiotherapist.

“My studies in biological science have definitely helped me understand my condition better.” Faizan is currently studying at Jamia University to become a physiotherapist.

"There is no one who looks like me here." The lack of communication about his condition has left him isolated and unwilling to venture anywhere else but school.

“There is no one who looks like me here.” The lack of communication about his condition has left him isolated and unwilling to venture anywhere else but school.

"We met at Aligarh where we were the only two guys in our class. We had no option but to be friends," teases Subhan. Both of them are pursuing the same course at Jamia now and their friendship has only grown deeper.

“We met at Aligarh where we were the only two guys in our class. We had no option but to be friends,” teases Subhan. Both of them are pursuing the same course at Jamia now and their friendship has only grown deeper.

"I want to be a doctor when I grow up. Or a photographer like you. Or I'll just draw." Tucked away from the Sun as if almost instinctively, Suraj shows off his painting skills.
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“I want to be a doctor when I grow up. Or a photographer like you. Or I’ll just draw.” Tucked away from the Sun as if almost instinctively, Suraj shows off his painting skills.

"My parents are first cousins. Albinism being a recessive trait, gets magnified if the parents are closely related. Even my 'Nani' was an albino." Faizan at home with his one-year-old niece as his mother and friend Subhan look on.

“My parents are first cousins. Albinism being a recessive trait, gets magnified if the parents are closely related. Even my ‘Nani’ was an albino.” Faizan at home with his one-year-old niece as his mother and friend Subhan look on.

"People with albinism need special care for their eyesight. His grandmother was an albino so you can say we had learnt something from that experience. I have always been regular in taking Faizan to an eye doctor," says Faizan's father. Faizan credits his 6/24 vision to his father which has left the doctors speechless.
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“People with albinism need special care for their eyesight. His grandmother was an albino so you can say we had learnt something from that experience. I have always been regular in taking Faizan to an eye doctor,” says Faizan’s father. Faizan credits his 6/24 vision to his father which has left the doctors speechless.

"Being an albino is not to be diseased. It's just a recessive gene. Quite honestly, I'd be accepted as completely normal in the European countries!"

“Being an albino is not to be diseased. It’s just a recessive gene. Quite honestly, I’d be accepted as completely normal in the European countries!”


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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

  • Mobilising young people between the age of 18-35 to become ‘Eco-Period Champions’ by making the switch to a sustainable menstrual alternative and becoming advocates for the project
  • All existing and upcoming public institutions (pink toilets, washrooms, schools, colleges, government offices, government buildings) across East Delhi to have affordable provisions for sustainable menstrual product options

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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