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christina

christina
raj , telangana

Mid shot of Christina Raj (57) in profile, kneeling with eyes closed and palms folded in prayer. The room is bathed in a warm golden light. Christina has bobbed wavy hair and wears glasses and red lipstick. She is dressed in a maroon round-necked tight-fitting top with three-fourth sleeves. Two white burning candles are placed in brass candlesticks on a wooden table in front of her. Hanging on the wall behind the table is a large brown wooden cross. A pink sculpture of the bare-bodied crucified Christ is fixed to the cross. Two large green Christmas trees, one on either side of Christina, are decorated with twinkling red, green and blue tiny bulbs and Christmas ornaments in red, white, silver and gold.
Mid shot of Christina sitting in a chair with her hands on the keyboard of an open laptop placed on a beige wooden table. The glow of the laptop lights her face. She wears red lipstick and specs with brown frames. She is dressed in a black three-fourth-sleeved pullover which gapes open to reveal a black round-necked top below it. There are golden and silvery metal studs in geometrical shapes fixed around the neck of the top. The cream wall behind her has a chocolate brown wall clock.
Christina in her maroon top and blue jeans is sitting in a room with off-white walls, on a brown wooden double-seater sofa. In her right hand she holds a white porcelain cup close to her mouth while her left hand holds up a white saucer a few inches below the cup. The sofa is furnished in a fabric in a brown and white weave pattern.
Mid shot of Christina facing the camera. Her face is turned slightly to the right. She has raised her left hand to runs a white comb with broad teeth through the hair on the top left side of her head. Her right hand is raise to the same height as she touches the back of her head on the right side. She wears a sky blue full-sleeved tight sweater with an open front that reveals a blouse below it. The top is printed with a geometrical design in chocolate brown, yellow and white. There is a strip of light blue wall behind her and an equal sized strip of golden brown curtain to its left. To the right of the wall there is a maroon curtain printed with a pattern of beige curlicues.
Christina sits on a blue plastic stool in a closed veranda with an iron grill behind her. She wears her sky blue sweater and brown-yellow-white patterned top with blue jeans and black canvas shoes. She holds a white cane upright between her knees. Behind the grill is a tree with broad green leaves.
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“I want to build a centre where Ichthyosis patients can get treatment and a sense of community”

According to the Rights of Persons with Disabilities Act (RPwDA) 2016, Christina Raj from Hyderabad does not have a disability. But when you consider the 57 years of perpetual suffering that Christina was forced to endure because of her rare genetic disorder, you can’t help wondering: if this isn’t a disability, what is?
 
Christina was diagnosed at birth with an acute case of Autosomal Recessive Congenital Ichthyosis (ARCI), an incurable condition that envelops her skin in thick, scaly layers. Her lifelong physical and mental agony could have permanently filled her with bitterness and rage. But what did she do instead? In 2012 she started a support group, the Centre for Ichthyosis Related Members India (CIRMI). Beginning with just five members, it has grown to 88 members on WhatsApp across Asia and Africa, providing a platform for sharing experiences, bringing help and fostering courage. Christina documented over 30 stories with photos of individuals with Ichthyosis from all over India, and filed a Public Interest Litigation (PIL) to declare the disorder as a disability under the RPwDA. The Delhi High Court has just directed the Ministry of Social Justice and Empowerment and the Ministry of Health and Family Welfare to treat the PIL as a representation and “decide the same…as expeditiously as possible”.
 
In 1967, gynaecologist Dr Victoria Ross had just given birth to Christina when her husband took one look at the newborn and delivered an ultimatum: “it’s either me or the baby”. Without a moment’s hesitation, Victoria hugged Christina – and remained her sole caregiver and personal physician ever since. The early years were a blur of ICU and NICU and surgeries. A combination of ARCI and Harlequin Ichthyosis caused her scaling skin to crack and bleed and her fingers, claw-like when dry, could only flex when submerged in water. “As a child I was always bandaged like an Egyptian mummy,” she recalls.
 
Victoria worked tirelessly to ease her pain, even managing to correct her inverted eyelids with care and perseverance. She has undergone seven eye surgeries and had a cornea transplant 10 years ago. Today she has low vision, uses a white cane, and has to wear dark glasses for protection. She has to constantly use a tweezer to keep her ear clean of flaking skin that hinders her hearing.
 
To take care of Christina, Victoria moved from Hyderabad to Warangal and worked in St. Ann’s Hospital run by missionaries. The nuns took care of “the capsule baby” as they dubbed her since she was confined to her room: the outside world was repelled by the sight of her. This inhuman isolation became a constant in her life. No attending birthday parties or family gatherings. No school either, for none would admit her, and when she tried going to one, the kids pushed her down the stairs on the very first day, breaking her toes. She was home schooled under the guidance of a nun. Appearing for her 10th grade exams was a Herculean task as she had to keep a bucket of water handy to dip her hands in (Ichthyosis prevents sweat from reaching the skin’s surface and cooling the body). During her 12th grade exams she suffered a heat stroke.
 
Books and music became her solace: Nancy Drew mysteries, Reader’s Digest articles, Sydney Sheldon novels, and Binaca Geet Mala on the radio. Victoria felt it was important for one to witness the pain of others and serve humanity. This shaped Christina’s worldview. She started taking care of patients at homes for the aged and destitute. Her pets were the many street dogs and stray cats she nurtured.
 
Victoria took voluntary retirement in 2001 and moved back to Hyderabad. Her memory started failing after she was diagnosed with dementia and Alzheimer’s. Christina lovingly recalls how even on her mother’s bad days she would remember the name of the right medicine to treat her daughter’s pain. A rare beacon of hope shone in Christina’s personal life when she met Antoni Raj, a missionary. Together they faced societal ostracism of the most brutal kind. Previous members of her apartments association called her vile names, disconnected her water and power supply, damaged her car, and tormented her in myriad other ways. They even complained to the police that she was a health hazard because she had a contagious disease! “But their behaviour only made me tougher,” she says. "I became stronger after 2017, standing up to the bullies."
 
Christina joined Motorola as a telemarketing executive selling pagers – a job she landed thanks to the kindness of Krishna Kumar Subramanian (whom she calls KK), and in which she excelled, earning the title of Best Telemarketer. She later worked for 12 years as a leadership trainer at Genpact, where she crossed paths with KK again during the job interview. She chose the night shift and covered herself from head to toe to protect her skin.
 
Since 2012 Christina has been immersed in building up CIRMI ([www.cirmindia.org](http://www.cirmindia.org/)). She is grateful to advocate Arvind who represented CIRMI in court and Justices Manmohan and Tushar Rao who heard the petition. She dreams of building a centre for Ichthyosis patients, a safe space where they can find support, treatment, and a sense of community. She ends our conversation with a hymn of gratitude: “Give thanks with a grateful heart, Give thanks to the God.” While her life is marked by unrelenting struggle, in serving others she has found her purpose.

Photos:

Vicky Roy

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