The author, Deepika Khatri is the Strategy and Advocacy Coordinator at Aangan.
The metal entrance gate to a Children’s Home for Girls is barred and locked and a young girl sits banging her head against it. No one pays her much attention. Behind her, four girls are lying in the corridor silently staring at the ceiling as a staff member cleans up after a girl who has just urinated on herself. A fifth sits in a corner, rocking back and forth. Inside, we’re immediately surrounded by a group of children. Three come up to shake hands, asking if we will play with them. The institution smells of unwashed clothes, urine and sweat. The girl at the entrance continues banging her head against the gate.
The cook-cum-cleaning staff member who lets us in says that it is what she does to get attention; it’s nothing to worry about. ‘Pagal hai, bas roz hungama karti hai’, she says. With other children needing her immediate attention to be cleaned, bathed and fed, and having to manage all the girls single-handedly, she is forced to prioritise who to care for first. Caring for children with incontinence implies having to repeat the cycle of washing and cleaning multiple times a day. Upstairs, another metal gate separates the ground floor from the first floor, where the ‘normal’ girls live. The staff member also has to ensure that these girls are readied for school and given their four meals a day. It is a full time job for four people, she says, not one.
The institution has a recommended staff capacity of 13. The actual number stands at 6, of which only 2 staff members directly engage with the children. They have a visiting doctor, but no paramedic. And at no point have these staff members been given any sort of support on caring for children with disabilities. The result? Intense pressure on the staff to simply get from day to day in circumstances that would rob anyone of the energy and ability for empathy. And the consequent impact on children: neglect, heightened vulnerability and a denial of even the fundamental right to dignity.
In a lot of the work done with children by different stakeholders working in child protection, the words ‘marginalised’, ‘vulnerable’ and ‘disempowered’ feature. Looking at institutionalised children with disabilities, one comes to understand what that really means—what it means to be invisible. For a person’s existence not to matter to anybody. The implications of not having a voice, of being able to exercise any sort of choice, and of continuously being perceived as a burden, lacking in potential and capacity.
Many of these assumptions stem from social perceptions of people with disabilities—that people with disabilities are in some way less human. The stigma attached to disability is such that at every level, advocating for the rights of children with disabilities is to battle deep-seated biases about the role children could play in the community as participating members. Existing conditions being what they are, only serve to dehumanise and deny children the opportunity and possibility of fulfilling their potential.
In this context, we are advocating for an inclusive approach, for staff to be supported in caring for children through basic training on health and hygiene and for lateral linkages between government departments to enable children with disabilities to access their fundamental rights. It means having to challenge the rhetoric that children will be better off in an institution created for others like themselves—that purportedly homogenous group of children with disabilities, where one is indistinguishable from the other.
The impact we hope for is an acknowledgement of the magnitude of the problem in terms of the sheer numbers of invisible children with disabilities, and to engage with other stakeholders in the disabilities sector to promote the rights of the children. The trickle-down effect this could have is for children to be able to go to school with their peers, to access the toilet, or to have someone help and train them to put on a pair of trousers on their own.
The silver lining is that for the most part, caring for children with disabilities is not rocket science. It involves support from a specialist to understand the needs of a child, but thereon, to ensure that the child receives that care—whether it is through simple changes in an institution along the lines of universal design such as the construction of ramps to key access areas, training a child in going to the toilet on their own, and in the more severe cases, to ensure that the child is fed, cleaned and cared for. No one-size-fits-all separate institutions but simple ways of standing for the child’s right to dignity and inclusion.