A Walk through the Road of Disability

There are many villages situated far from cities, tehsils, and gram panchayats, with roads still in very bad condition. When we talk about any public transportation, there are few means. When considering disability in these areas, we cannot even imagine the challenges they face. One question that arises in the mind is – what would be the condition of the persons with disabilities where people from the mainstream community are struggling? How can all types of resources reach them!

Currently, I am working on Intellectual and developmental disabilities in Raigad district, Maharashtra.  In the first stage – Identification cum Need Assessment, I got a chance to visit many such villages as part of my routine work. Till now I have visited 42 such places from 7 group gram panchayats which include villages, padas, wadis. I travel by foot. Walking gives me a sense and feel of the geographical diversity. By engaging in conversations with persons with disabilities and their family members I get to know about their situation, their understanding of disability and their distance from available resources. India is diverse in many aspects. Geographical diversity being the biggest. Effectiveness of any policy depends on its accessibility and whether the intended people are getting any advantage of it. Understanding the significance of geographical diversity is crucial for all of us, among availability of resources, policies, and schemes.

If I talk about the “attitudinal barrier” within the Caregivers’ community (Intellectual and Developmental disabilities), so in that case one aspect is very concerning. Caregivers are mostly parents. The condition of intellectual and developmental disabilities is divided into 4 degrees. In mild-to-moderate cases, it is mostly heard from parents that they do not want their children to be sent to the center as they believe their children are fine. There is just a little problem. Their main concern behind this is their children will become like them and this comes under severe to profound case. We are already struggling for infrastructure, then this kind of a barrier adds to concern, as we move towards creating an inclusive environment, this pushes us back. We are moving from a medical model to the social model. The social model of disability and the understanding of disability as a human right led to the recognition that persons with disabilities have a right to participate, to be included. And will be achieved by identifying and addressing the barriers they might experience.

Inclusion means skills changing their attitudes and practices to suit the needs of the children with disabilities in that community. This will not be easy. We face many challenges in making the community more inclusive. Lack of money and resources are the major part of the problem but the attitudes and expectations of parents and other stakeholders need to change. Parents need to overcome the stigma of disability and advocate for their children. From my experiences with intellectual and developmental disabilities, the primary concern of our policymakers or funding agencies is about numbers and impact.

When I talk about disabilities, especially severe to profound intellectual and developmental disabilities, for instance, if we are suffering from a fever, we take paracetamol and recover from the fever – the first step was acknowledging the condition and moving accordingly. But it would be an achievement for us in the area of disability, that the parents of a child with severe to profound intellectual and developmental disabilities have understood their condition. Maybe after a few days, months, or years, they start bringing the child to the center, and maybe the child starts smiling in two years, it can be a big achievement for us, we need a change in our approach, at the policy-level, at corporate-level and definitely at public at large. A lot of advocacies are needed at the upper level and at the community level as well. Already we are struggling with infrastructural barriers along with attitudinal barriers. Disability is a condition where we need to understand their needs and, need to support them as per their needs. It is a lifelong process.

Two questions have come to the fore for me. Families who take their child to rehabilitation facilities say that there is no benefit in investigating, and those who did not take the step, the question remained whether the child will be able to recover. Believe me, the definition of what is ‘right’ is very difficult. We need to keep working on the attitudinal barrier along with the infrastructural barrier, or should I say we need to be engaged. Disability is a journey; everyone’s participation is important in it.

What kinds of support do children with intellectual and developmental disabilities and their caregivers need?

There are different kinds of support that children with intellectual and developmental disabilities need such as –

• Self-Dependent Daily Life – Therapy (Early Intervention, Behavior Therapy, Occupational Therapy,
• Speech Therapy, Physiotherapy and Special Education.)

• Self-Dependent Economy – Vocational Training & Skills, Employment Connect

• Support System- Parent/Caregiver Counselling, Caregiver skills training, Linkage to Government Schemes, Helpline Connect, Parent Support Group Connect.

Our overall role is to give support to children with disabilities in anything that they find difficult, as we do with all children. How we carry out our role makes a big difference to the child’s development.  Our role is not just what needs to be done for children with disabilities but also how it is done. We each have a role to play that supports the well-being of children with disabilities. This is the role of the mothers, fathers, carers, health workers, and neighbors in each community or village.

Children with disabilities really need a village to raise them, and communities need to raise children with disabilities. We are dealing with children and adults here who might never attain independence and will be in need of lifelong care.