Six Learnings from 30 Years of Working in the Disability Sector

I have been around in the disability sector in some form or the other for about 3 decades now, and yet, when I am asked to talk about it, I never know where to start. There is just so much going on in the sector at every conceivable level that the “relevant” bits get lost. For me, it is all equally important and it is all necessary to know, if you want to understand the sector at all.

When it comes to childhood disability specifically, India is in a critical state. This section of society  is under-represented, largely ignored, misunderstood and mistreated. Even when they become part of the bigger narrative, the point under discussion is the nomenclature – do we call them disabled or differently-abled? Brain damaged or special? The conversations that will actually make a difference to them happen behind closed doors – so what if the child is not normal? What about his/her right to a good life, an education and employment? What is the right curriculum or treatment for them? Who will govern the standards of working with these children?

A report by the World Health Organisation states that out of every 100 children in India, 1 or 2 have special needs. Considering the population of India, this comes to a whopping 12 million children, which does not include the unreported or undiagnosed cases, children with rare diseases, autism, and so on. When you come down the socioeconomic ladder, the numbers are scarier.  It’s a known fact that the likelihood of disability is higher in the poorer strata of the society. Going by the 2001 census, of the 9.4 lakh disabled individuals in Karnataka, 6.7 lakh of them reside in villages.

Having said this, I have been extremely fortunate for having been given a chance to work and learn in this sector. Some of my learnings are as mentioned below.

Dismal state of infrastructure and amenities

Although there are millions of children with special needs in India alone, there are very few centers which cater to children with developmental delays and especially for those in need of early intervention programs. This makes it difficult for parents to make equal opportunities accessible for these children. Especially, in backward areas, due to lack of sufficient right resources, this becomes even more difficult. Secluded therapies and services make logistics and holistic treatment difficult. There was no single place which would provide all services.  Even if there are few special education centers, not many people know about them.

There is no single standard solution or therapy

With a multitude of symptoms constituting the indicators of developmental delays, there cannot be a ‘One Size Fits All’ solution or therapy to treat children with special needs. In addition to developmental delays, children with special needs can also have a combination of other medical conditions and when there are thousands of disorders that a person can get, a generic approach definitely cannot work.

Families of children with special needs are neglected

There is no respite for the overburdened parents, especially the mothers, being the one responsible for taking care of the child 24×7. Parents and families of these children with special needs are hardly provided any kind of support at the social, emotional, and financial levels.

The sector does not realise the importance of providing families as much training and support as the child needs. When families are trained to understand the condition of the children, they can support them better.

Selective blindness towards disability issues

The concept of pitying the differently-abled has been a part of the fabric of the Indian society since eternity. So, there is considerable hesitation when it comes to interacting and mingling freely with these individuals. In the process, the individuals and their families often end up being isolated by society and therefore face a lot of stigma on a daily basis.

In addition to the social stigma, families also have to deal with financing the medical treatments and therapy sessions. This can be mitigated to a certain extent by availing the financial schemes made available by the government. There are other, non-financial resources as well, provided by the government. However, the awareness levels of this is quite low among the families.

Apart from the above mentioned points, there is insufficient human resource who can be trained to work as special educators. Additionally, the absence of a central data repository makes it difficult for organisations working in the disability sector to reach out to those in need.

Denial is a bigger problem than awareness

In cases of brain damage or mental disorders, symptoms are quite ambiguous and hence brushed off as general misconduct of children. Parents find it difficult to accept the fact that their child is differently abled or has special needs. This could be attributed to the huge stigma associated with the term disability. The first step would be to work towards decreasing the stigma and encouraging more conversations and support groups.  There is an entire generation of lost children – an entire section of population hidden in hearts of the parents who deny their condition and in the mind of the society which rejects it.”

Inclusion is a two-way street

It is the responsibility of the disability sector to create awareness among society about ways in which differently abled individuals can be integrated into the mainstream community. At the same time, it is essential to prepare these individuals to be capable of being a part of the mainstream society. This way, both sections of society work towards bringing about inclusion in as many aspects of daily life as possible. Eventually, the end goal of inclusion should be to empower the differently abled and help them aspire for a life where they are treated at par with the rest of the community.

Tamahar works towards bridging this gap and helping individuals with special needs become a part of the mainstream society. To bridge this divide is my dream for Tamahar. That I help my children come halfway and I help the society meet them in the middle. Help them meet halfway.

Vaishali Pai

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