Siddhesh RautMoneycontrol News
The world observed Autism Awareness Day on April 2, which is designed to recognise and understand those battling autism, an ailment that impairs the ability of people to communicate and interact with others.
In India, 3 percent of the total population is estimated to be people with intellectual and developmental disabilities (PwIDDs), according to a report titled, "Count Me In: Building an inclusive ecosystem for persons with intellectual and developmental disabilities".
Compiled by Bank of America in collaboration with strategic philanthropic organisation Dasra, the report quotes World Bank estimates that suggest India has anywhere between 40 and 80 million persons with disabilities (PwDs). The World Bank also estimated that close to 45 percent of them are illiterate, and over 70 percent are not part of the labor force.
As per the report, while there is no clear definition for a developmental disability, it can be described as, "A delay in sensory, cognitive, social, emotional or communication development."
"Such disabilities appear before the age of 22 and could involve physical disabilities such as blindness from birth and/or intellectual disabilities like Down’s Syndrome," it read.
An intellectual disability, "Is a condition characterized by a significant limitation both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior (which covers a range of every day social and practical skills.”
The International Labour Organization states, economic losses resulting from the exclusion of PwDs from the labour force are immense, ranging from 3 percent to 7 percent of a country's GDP.
There have been steps taken to remedy this. The Rights of a Persons with Disabilities (RPwD) Act, 2016 provides 1 percent reservation for those with intellectual disability in government jobs in addition to the earlier provision provided in 1995, which were largely for the physically disabled.
The act recognises 21 categories of disabilities, as compared to seven categories identified earlier.
However, the report pointed out that while such laws did come into existence to recognise and protect the rights of people with intellectual and developmental disabilities, they are regularly mistreated and denied basic human dignity.
"They are stigmatized and widely considered less deserving of opportunities for education and employment. This in turn impacts their ability to access the prospects, privileges and resources they need to achieve their full potential," the report said.
It provided a four-step approach to ensure the inclusion of PwIDDs into mainstream life, and live with dignity.
1. By strengthening the timely identification and family centered early intervention services, the impact and extent of developmental delays on PwIDDs can be reduced and controlled.
2. By ensuring educators are equipped with teaching strategies to cater to PwIDDs needs, learning outcomes among persons with IDD can be improved. Teachers in school are provided a total of only five days of training for teaching PwIDDs.
3. By creating employment opportunities and conducive work environments for PwIDDs, they can be provided with opportunities to be economically independent.
4) By driving awareness and advocacy using evidence-based research, we can create a diverse and inclusive society in India where PwIDDs are treated with dignity and respect.
Jeeja Ghosh, Founder of Inclusion Infinite Foundation said, "There is a huge gap in employment opportunities for persons with IDD. Private sector companies should be more active in creating these opportunities for people with disabilities. The job market should be open to everyone."
The report mentioned that the perspective of self-advocates would be paramount for inclusive and better policies and treatment of PwIDDs
In this aspect, Ghosh -- who has cerebral palsy herself -- is considered a pioneer to have raised awareness by representing the needs and challenges of PwIDDs at national and international forums.
One aspect that was important towards improving the inclusivity of PwIDDs was the redefining the culture around how PwIDDs were viewed and treated.
Dr Vibha Krishnamurthy, founder of Ummeed Child Development Center, said that this was more crucial than providing the infrastructure.
"When people think about inclusion, they think about infrastructure, let’s get more wheelchairs, more hearing aids, and the like. But I think what is more important are the attitudes of inclusion. Taking the time to know someone, and giving the space they need to feel included, and how they can contribute," she said.
The importance of reframing attitudes towards PwIDDs is more important given another observation in the report.
"In many parts of India, intellectual disability is still considered to be the result of divine justice or punishment for sins committed in past lives and PwIDDs continue to be neglected and marginalized," according to the report.
This lack of awareness and insensitivity percolates by the ill-treatment meted out to PwDDs, and the inappropriate policing of life choices that others in mainstream society enjoy.
"Another thing is there being a restriction placed by mainstream society on things persons with disabilities can do, what they cannot do, and what they are not allowed to do," said Ghosh.
She recounted how she received a lot of flak when she got married and decided to raise a child, where people were raising doubts on her ability to do so.
"They would ask, 'How can this non-disabled man marry this woman? How will they look after their child?' This attitude comes from people who are even called themselves as professionals," she said.
Nonetheless, Jeeja managed to not let the negativity get to her. She attributed a lot of this inner reserve to the positive environment that she was a part of in her formative years.
She recounts that though she had to climb up three flights of stairs for her classes, the inclusive attitude of her teachers and her schoolmates ensured that she did not feel any different from the rest of the children.
"Positive environment trumps negative infrastructure," said Krishnamurthy.
"If children get the positive push from their family, they are more likely to have a better way at looking at things and their own condition," she said.
Krishnamurthy stressed on the need to have an open dialogue between a child and family members to ensure that children have the right mindset about their condition.
"Very often, parents don’t want to talk about their diagnosis with the child, but being self aware of one’s strengths and their challenges is a critical thing for persons with disabilities to do well," she said.
From her experiences, she noted the harm that stigma around such topics can cause.
"It is a catch- 22 sort of a situation. Because it is a stigma, parents don't want to talk about their child's condition with them, or at school, or anywhere else. So the child sees it as, 'I don't even know what I have, and something is wrong with me,' as compared to, 'I’m different, and that's okay. I've got my own strengths and challenges'."
"Rather than telling them to not stare, We could encourage them to ask (the PwIDD) how does their wheelchair work. Kids are curious that way. Allowing people to get to know, and creating a space for people where it is okay to do that is important," she said.