‘They are our children too’
A clinic Being held in a tiny space by the Department of Disability Studies of the Kelaniya University’s Medical Faculty. Pic by Amila Gamage
Namal Udayanga is no more. From a remote village in Hambantota, this 20-year-old died in April.
But his memory and the anguished efforts of his parents living in abject poverty who toiled against all odds not only to keep him alive but also to educate him has been the tiny spark that has fuelled the campaign to turn the torchlight on a major need in Sri Lanka.
This searing issue cutting across all strata of life, from the humblest to the poshest home, is the plight of children living with disabilities and the lone struggle of their families to cope with the situation.
With many looking at them in askance believing them to be ‘children of a lesser god’, the tiny spark set off by Namal’s life has become a collective effort for the launch of ‘Ayati’ – a National Centre of Excellence for Children with Disabilities. The construction of ‘Ayati’, which has aptly found a home at the Kelaniya University’s Faculty of Medicine at Ragama, is to begin in December and is scheduled for completion in a year.
Muusalai, these children are called derogatively, with neighbours shutting their doors long before they come into view; bus conductors refusing to give them a ride even though desperate parents plead that they will pay the fare; and if they are ‘lucky’ to gain admission to a pre-school, all other children being removed by their parents with the excuse that they are being ‘influenced’ to behave differently.
Even for the parents of children with disabilities the future stretches into fearful uncertainty, expressed with heartrending agony, which we cannot imagine even in our most traumatic nightmares.
“Every mother wants their child to live 100 years or more……..but in our case we want our child to die at least an hour before our death,” a mother of a child with disabilities has said, while another adds: “I had so many dreams when I conceived you my little girl…….that was only a dream and you have come to this world to pay for your sins……Whatever you may be I will love you and care for you but unfortunately your father and the family left us to fend for ourselves……I will be with you till death parts us.”
And the stigma continues, as portrayed by this father when he says, “I carry my son 3km. Still the bus doesn’t stop because my son looks ‘evil’……it is a bad omen for everyone to see him in the morning. For me, he is the most treasured gem.”
This is exactly what ‘Ayati’ hopes to address and overcome — enabling children with disabilities to reach their unique potential, while ensuring equal access to education, healthcare, social participation and employment.
Well-loved cricketer Roshan for children with disabilities
“Children with disabilities need an education and training, like any other child. Their talents and strengths should be identified and they need to be given their rightful place in society. This is while their families need a lot of support to care for them,” says cricketing great Kumar Sangakkara, while wife Yehali talks with poignancy about the needs of these children after being on a television programme with them along with a dedicated doctor.
It is on the overcast and rainy Tuesday that the Sunday Times meets up with Kumar and Yehali, as well as another cricketing legend Roshan Mahanama on the 9th Floor of Hemas House down Braybrooke Place in Colombo 2. Hemas Holdings PLC has set that tiny spark alight to ‘engulf’ many other partners in this urgent national effort. (See box)
Paying tribute to all those who have soldiered on, sometimes single-handedly, to meet this dire need, Hemas Outreach Foundation Executive Director Shiromi Masakorala who is also Head of Group Sustainability and Corporate Communication of Hemas Holdings PLC, is sending out a strong appeal to make this a joint effort.
Having crisscrossed Sri Lanka, setting up Piyawara pre-schools since 2002, under the Foundation’s flagship project, she had realized the huge vacuum in the facilities available for children with disabilities. She has listened to the tales of woe and hardship of mothers, who sometimes had been abandoned to fend for themselves and their children with disabilities, with no support-system whatsoever. Namal’s life and death, in a sense, have been the turning point and it was a visibly emotional Shiromi who approached the Hemas management, seeking to go beyond Piyawara and set up a National Centre of Excellence for Children with Disabilities, to which they readily agreed. Next came the partnering with the Kelaniya University’s Medical Faculty because it is a trailblazer being the only medical faculty in the whole of Asia with a Department of Disability Studies offering multidisciplinary care for these children.
For families with children with disabilities, all their love, energy and everything has to be expended on that child, with the parents sometimes being unable even to eke out a livelihood, says Kumar, while Yehali adds how some of these parents do not have recourse to any support.
The initiator: Shiromi of Hemas
There seems to be stoic resignation and a sense of despair as if they have given up, she says, recalling a chance meeting on the road with parents carrying a child with a disability, with whom she stopped to chat.
Referring to incidents where children with disabilities have been tied up, Kumar is quick to point out that it may be the only way to keep them from harm while the mother goes out to work to earn some money to feed the child. This is why a centre such as ‘Ayati’ is essential to provide support and access to a secure and safe environment and give the carer a tiny break, to take up her/his heavy load again in a little while. “It’s not only about the child with disabilities, it is also about the parents and families,” says Kumar, urging people not to feel ‘sympathy’ but ‘empathy’ for such families.
“There should be no segregation of children and adults with disabilities,” reiterates insightful Kumar, underscoring that “inclusion is the absolute key” for they should have equal rights to a childhood, equal access, equal right to education and employment and equal rights to the correct quality of life.
“Supporting ‘Ayati’ is a way of giving something in return to society,” says Roshan, explaining that this is particularly important because “kids are our future”. This is why there is an obligation. It should never be for sympathy but to give them an equal opportunity.
With Shiromi categorical that ‘Ayati’ is not a Hemas branded project and it is not about who does what or how much but getting something very important done so that everyone can be a part of it, Ayati Trustees Kumar and Roshan will spread the message against stigma as well as make a concerted effort to co-opt corporates to lend a helping hand.
As we walk out of Hemas House after the interviews and the sun, overcoming the rain, peeks out from amidst the dark clouds, there is an inherent conviction that ‘Ayati’, as its Sanskrit name denotes, will offer a glimmer of ‘hope’ to thousands of families who have been all-alone with their beloved children with disabilities.
The message that ‘Ayati’ is sending forth is: “You are not alone. We are by your side.”
Cricketing great Kumar and wife Yehali take up the cause. Pix by Anuradha Bandara
| All about the project Join us in this national effort, is the plea by all those involved in the setting up of ‘Ayati’, a National Centre of Excellence for Children with Disabilities. “Our aim is to play our part in ensuring equal access to education, healthcare, social participation and employment for children with learning disabilities in Sri Lanka. While a significant amount of capital will be channelled by Hemas, we invite all other corporates and business partners to join us and be a part of this much-needed facility,” Hemas Holdings PLC Chief Executive Officer Steven Enderby urges. Giving the backdrop to the ‘Ayati’ centre, Hemas Holdings PLC Group Director Abbas Esufally who is also the Outreach Foundation’s Chairperson refers to the success of their primary corporate social responsibility project ‘Piyawara’ on early childhood development launched in 2002 in partnership with the Women & Child Affairs Ministry. It is now a national project with 41 pre-schools with about 3,500 children and more than 100 teachers across the country. More Piyawara pre-schools are on the cards. “Over the years, it has grown in stature to become one of Sri Lanka’s most successful public-private partnerships. This has led us to initiate a project of this nature to address the burning issues of children with disabilities,” he says. Designed by renowned Architect Channa Daswatte, the state-of-the-art 42,000sqft ‘Ayati’ centre on 1.5 acres of land in Ragama is estimated to cost about Rs. 350 million. The vision is wide and varied, with the centre being seen as the hub with a network of affiliated units in the peripheries in all 25 districts. With the Kelaniya University’s Faculty of Medicine already offering multidisciplinary care for children with disabilities, the vision is also to pioneer the provision of telemedicine to distant centres in low-resource settings. The centre also hopes to provide training to parents and service providers such as midwives and pre-school and primary teachers, while being affiliated with other recognized institutes in the country, enabling parents with the opportunity to receive further referrals or treatment for their children. These children will include those with Autism Spectrum Disorder, behavioural & conduct disorders, learning disabilities including dyslexia, infants at risk requiring early intervention, cerebral palsy, cognitive impairment, syndromic conditions such as Down Syndrome, visual impairment and hearing impairment. Referring to their experiences, the Dean of the Medical Faculty, Prof. Nilanthi de Silva says that they run a small clinic with minimum facilities where around 1,500 children are registered. Disabilities are on the rise worldwide for multiple reasons and ‘Ayati’ is expected to deliver services to a larger community, providing initial assessment followed by interventional therapy where necessary, along with basic vocational training and life-skills. Medical assessment, speech and language therapy, audiology and occupational therapy as well as physiotherapy will also be available under one roof, she adds. Ragama is seen as a good location, being easily accessible both by bus and train. As a training and research facility, the experience of many undergraduates and regular foreign graduates who visit the university as well as the lives of a lot of parents who have children with disabilities and the children themselves will be enhanced. Ayati will be managed by an eminent Board of Trustees chaired by Prof. de Silva, with an Advisory Board including officers from the Education, Social Welfare, Women & Child Affairs and Health Ministries. An independent accountancy firm is to be appointed as the Fund Manager, with Ernst &Young as the auditors. |
For more information please phone: 011-4731731, Ext 1216 or Email:info@ayati.lk