The Home Of “The Incurables”

We were surprised to see story below from Sri Lanka !

The Home Of “The Incurables”
By Shifani Reffai

Nurses spend most of their week at Victoria Home and On the outside, looking in?
Located on the busy streets of Sri Jayewardenepura Mawatha in Rajagiriya, Victoria Home for Incurables is hard to not notice, as the patients inside wave at you through the windows, and remind you of those who seem to be marginalised for just being who they are.
On mentioning my intended visit to Victoria Home for Incurables to some people, I was warned “not to touch anything” and “to wear a mask in case you catch anything.” Expecting the worst, I was pleasantly surprised and ashamed of myself to find Victoria Home is a home for the irreversibly physically handicapped, not the diseased. The place had been opened up 123 years ago, by the then Governor of Ceylon, during the Coronation Jubilee of Queen Victoria. “Our official name is Victoria Home for Incurables,” says the Director of Victoria Home, D. K. Thewarapperuma about the somewhat misleading title, “And we have been trying to remove the word ‘incurables’ from it, but it is an action that has to come from parliament itself.” Victoria Home is funded by the government and donors, and is not merely a hospital or a house, but a home to many.
A World Tucked Away
Fifty three year old Malini* lived for 30 years at home with her family in Embilipitiya before being moved to Victoria Home – she suffers from rheumatoid arthritis, which is a chronic disorder that affects synovial joints, leaving Malini permanently in a wheelchair; one-percent of the world’s population is affected by rheumatoid arthritis. Despite all this, Malini is all smiles as she entertains her visitors, talking about how she enjoys handcrafting like making and painting on cards and clothes. The fruits of such endeavours, pursued by many others at Victoria Home too, are hung in an elegant row above beds in Malini’s ward. “I am happy here,” she says with a cheerful smile.
Radika* a younger patient, shares similar sentiments; she was diagnosed with polio at four years of age, a common viral infection that can cause muscle weakness and paralysis. Radika enjoys playing popular Sinhala songs on the electronic keyboard and you’ll hear her pleasant music drifting through the corridors of Victoria Home on an average weekday afternoon.
Rani* walks up to me and blankly tells me her name and trudges away abruptly, and Deviyani* begins to say something but then just walks away laughing – these are a few of the psychiatric patients who were moved to Victoria Home decades ago, though the practice of admitting psychiatric patients is no more.
Piyadasa* treats his visitors to a beautiful rendition of a jovial song in Sinhala, as he looks up from his wheelchair. “My favourite artistes are Jothipala and Kapuge,” he says with a grin, clearly a big fan of good music. He hails from Matara, and can skillfully sew and make stuffed toys and keytags, as many learn to do at Victoria Home; “I haven’t been able to walk since I was a child,” he says, “and now I sing when people visit!” Piyadasa also enjoys mathematics and has mastered the art of playing drums.
Premasiri*, 52 years of age, has spent two and a half years at Victoria Home, as his legs haven’t functioned since birth. He is an electronics mechanic, and can do anything from repairing radios to motor winding. “There is freedom here for us that you don’t get in many other places,” he says, his intelligent eyes gleaming.
There are those at Victoria Home whose lives were altered after horrific accidents too, such as Rajesh* from Malabe, a smart looking man in his thirties who has been at the home for 15 years. He seems apathetic but accepting of his life now, a common feeling among many of the inhabitants.
Lila* who has been here for the past 14 years, has a leg deformity, and is restricted to a wheelchair for life. She spends her time making table mats and often entertains her friends in the ward and visitors with her skills in astrology and palm-reading. “I like visitors like you,” she says, with a friendly grin, “It’s nice to have company.” Vimala* sits quietly most of the day, with a book in hand, in a chair by her bed. She was diagnosed with meningitis when she was 10 years old, which causes inflammation in the membranes of the brain and spinal cord, and has a paralysed arm.
Vimala comes off as very lucid and intelligent, as she says how she wishes she was at home, with a sad smile. Many of the clear minded inhabitants of this home feel the black cloud of boredom drifting into their lives on a regular basis, for what else is there to do, but to sit around, reading, making a few things, and waiting for visitors. Although some have made peace with this fate, some wish there was more to their lives.

Outcasts
Some of those who live at Victoria Home did not want to be interviewed, and shrugged their shoulders with cold indifference, their pride hurt. The reaction is quite normal for someone with a sense of dignity and was more common among the young 20-something year olds whose lives changed after accidents. Scrutiny and the negative perception of the physically handicapped by many of those who are not, is cruel and lies in a primitive mindset that most of us possess: that they are so different from us, that they must be treated differently – when they have blood and bones and feelings just like you and me.
Sri Lanka’s societal system is to blame for reinforcing this perception – how many ordinary buildings do you see out there with ramps on their entrances or bathroom stalls for those who are differently abled? Is there a means by which someone in a wheelchair can get inside a cinema for a movie or a theatre for a play or a fast food joint for a burger? Can an intelligent human being with skills and talents of their own, but in a wheelchair or with a limp or with a paralysed limb, travel in public without having to suffer at least a handful of stares, either just rude or mixed with judgmental sentiments of fascination, horror or pity? How accepting are we as Sri Lankan citizens towards those who are physically differently abled? Just look around and count how many people in wheelchairs you see in public on an average day, and you’ll find your answer.

Unsung Heroes
A large number of people living at Victoria Home suffer from cerebral palsy, which includes a variety of disorders that are all basically non-progressive, non-contagious motor conditions that cause physical disability in human development. The most common and more severe form of cerebral palsy is spastic diplegia, which causes spasticity in muscles often in the hips, legs and pelvis, making it difficult or almost impossible to have control over bodily movements.
The corridors of Victoria Home that lead to the ward with patients with spastic diplegia are less pleasant and the stench of urine and cries of patients experiencing convulsions fill the air; there are hardly any visitors here. It is a dreary sight but one wonders who stays with them, feeds them, nurses them? Who has the patience and the selfless dedication to show such kindness to strangers on a regular basis?
Maria* a senior nurse at Victoria Home, who retired from a leading hospital in Sri Lanka, joined two years ago. She requests me not to mention her name, adding evidence to the notion that this home for the physically handicapped has its share of social stigma. She knows everyone’s name and medical condition by heart, and recites them with as much ease and knowledge as a mother would know of her children. She walks through the corridors of Victoria Home from morning to eve, talking to and watching over the people here, providing them with the company and love that so many of us with homes of our own take for granted.
When asked why he continued working here for 20 years and counting, Aarumuham provides a surprising answer. “I feel an affection towards the good people who live here,” he says in Tamil, “yes, the work is difficult, but what to do.” The labourers here get only a mere Rs. 5000 a month to take care of themselves. When asked what his dreams in life are, this humble man with a heart of gold says, “Just a house and garden, that’s the dream.” Other labourers like Mallika and Maraganam, also spend their days at Victoria Home, helping those in need; two of their prime concerns are that the place needs more volunteers, and that there is a need for a better salary. Their children are grown up and working themselves, with families of their own, so these men and women are left to fend for themselves. “The cost of everything is too high these days, just travelling to and from work takes up part of my salary,” laments Maraganam. “The patients here are happy; we feed them, change their sheets, talk to them,” they add, “We are their life.”

The Problem
Victoria Home is a haven for those who, though may be accepted by friends and family, are clearly not fully accepted by the Sri Lankan system as individuals who are capable of playing a useful role; it is not a hospital or an asylum or a building in which people are disposed of, but it is a home for people who deserve one. But unfortunately, this home will fight a losing battle atleast until society takes notice. “We are suffering financially and can’t afford to allow any more admissions for now,” says Director Thewarapperuma. “Although we do get donations from neighbours and philanthropists, and the government gives us an annual grant of Rs. 1.8 million – it is not enough. We need five lakhs a month, that is Rs. 6 million a year – we get only Rs. 2.4 million a year. The future is bleak.” With 175 male and female patients, 14 wards to maintain, a staff of 50 to pay, the need for food, equipment and medication, Victoria Home only receives one-third of the money that it needs to run smoothly.
Beyond this problem, though, is a deeper one – one that is much bigger than money and material things. It is a lack of human empathy on the part of the rest of society. The people of Victoria Home, many of whom are happy, well taken care of, and with skills and talents despite their physical differences – live inside this home, often for the rest of their lives, and they are very clearly not made a part of the functional societal system outside this home. Of course there are those who are physically handicapped in Sri Lanka who have had the strength and determination or the family and friends to do something productive with their lives that makes the reality of their physical ‘disability’ fade into the background – but the number of those people is relatively very small.
Especially with modern day equipment and prosthetics available, there is a need, as a society progressing in terms of intellect and civilization – to see Suresh, a teenager in a wheelchair travelling to and from university, Sarath with a paralysed arm working as a receptionist at a bank, Piyadasa and Radika playing instruments and singing for a public audience, Malini using her creativity to get into advertising or a business – and all of them being able to do this, on an equal level and ease as those without physical handicap. It is a grave injustice committed that this is not the present reality, and one can only hope that we open a pair of introspective eyes as a society and realise the need for change.
(*Names have been changed)