Abha Adams is one of India’s most well-known and respected educationists. An alumna of Lady Shri Ram College, Adams has served as Director of the Shri Ram Schools, establishing the Shri Ram School, Moulsari in 1995 and The Shri Ram School, Aravali in 2001 followed by the Shri Ram Educare consulting company. In 2006, she served as Education Advisor to the top-ranked Step by Step School, Noida. Currently, an educational consultant and adviser to several national and international educational, arts and training organizations, Adams recently turned author with Parenting in the Age of Anxiety (2022). In this relevant, insightful book, she discusses the challenges and choices parents face, and must make, while raising children in these fractious times. Excerpt:

Societies marginalize communities by making them ‘invisible’. Just as women were behind doors, behind veils, or walking behind their menfolk, in some societies we tend not to see the aged and the infirm that are hidden away. But in our society, sadly, we have drawn a veil over disability as well. People with disabilities have no presence in schools, colleges, shopping centres, parks, and even in social gatherings in our homes.

Whilst talking to senior students in an inclusive school on the subject of diversity, I asked the class how many of them were aware of the range of disabilities that many of us lived with, and if they had known or met young teens with different abilities socially, in family gatherings or amongst friends. For a moment there was an unfamiliar hushed silence in a normally animated class. Then very slowly, hands began to go up, and encouraged by those who went first, other hands raised themselves.

That forty-minute class has been one of the most meaningful moments in my career as an educator.Students shared, perhaps for the first time, their concerns around their ignorance and awkwardness at being around those who had a disability. A few spoke about siblings with challenges who were not acknowledged by the larger family, about how the family rarely spoke about the needs of their special child with the other children. It’s almost as if there is a silence around acceptance and acknowledgment, very much like the silence around mental health.

Shalloo Sharma weighed in on this, pointing out that while we have gender studies in our school curriculum, we don’t have diversity studies. All the parents I spoke to make a strong push for the need for inclusion in all spheres of life, else how will we ever know what each individual’s true potential is? You need one person with diverse needs in a large organization for that whole organization’s perception to shift.

It is imperative that we view the bridge to inclusion as critical and we need more and more schools to embrace inclusive practices. When children of all abilities learn and grow together, there is an understanding, an acknowledgement, and a warm acceptance of diversity. Shalloo explains this with passion, ‘If someone has not met, seen, or experienced a person with diverse needs, haven’t seen them working, functioning, smiling, and being, they will not “know” them. We need to push visibility.’

I don’t think people are deliberately being obtuse. It’s just that they don’t know. And there are prevailing stereotypes which we are all guilty of. We used to say, “Andha ho gaya hai? Behra ho gaaya hai? — Are you blind? Are your deaf? I have known people whose needs are different and that’s why I wouldn’t use those words nor allow anyone close to me to do so,’ says Shalloo.

As parents of a special child with CP, Seema and Ashok have experienced this lack of sensitivity first-hand. ‘When I take Mohan to the park in his pram, people stare at me as if we are criminals. They need to understand that it is God who has given us a special child. I face it each and every minute. When I go to my in-laws’ house, we have to park our car and walk 600 metres, and I fear that walk because of the way people look at me and my child. Even at school, when I took Mohan for assembly, when we walked off the stage, all the parents stared at me, looking uncomfortable, as if my child and I had no business to be there. Inclusion is so important, and for Mohan, who has no friends, his world is his family. But when children grow together in an inclusive school, acceptance grows within the group and I am so happy that over time the children in his class have accepted him.’

Social acceptance and recognition from institutions leads to acceptance from the family and community — and not just in terms of reservation and quotas. Support groups are a source of great strength for parents of children with diverse needs. They provide solutions, an opportunity to learn from each other, share advice, and group members who are always there to listen to each other.

We need a proliferation of such support groups to help parents draw upon others for the strength and advice they need on their journey. Drawing strength from each other, parent support groups create communities that step in to help each other, provide forums for sharing and discussion, and welcome volunteers to spend time with the children while they attend meetings. In Chennai, VOICE (Voice of Parents for Inclusion, Care and Empowerment) of children with special needs, was started with ten parents, and has grown to nearly 2,000. Similarly, SCAN (Special Child Assistance Network), which has over 3,000 members on its Facebook page, organized live calls and activities during the pandemic to help parents keep children engaged and share their own challenges and difficulties.

I requested all the parents and specialists I interviewed to share their learnings and advice with other parents. What follows is a moving collection of what they had to say:

‘Parenting a special child is for life. It is a situation that stays with you and there is no shortcut and you can’t run away from it. It’s important that as parents we don’t see it as a “problem” and stay positive. There needs to be an acceptance of this reality. Special children are the way they are, your child is not “diseased”, and you cannot focus on looking for a “cure”. When this acceptance is missing, unscrupulous doctors take advantage of it and prey upon the hopes of the parents. So stop thinking of “correcting” the problem’, says Neelu.

‘Every special parent needs a guide to tell them how to think about their situation. Someone to help you change the mindset with which you approach your child’s disability. The journey is very different, it’s very long, I remember the guidance I received from my biggest support — she said everybody has a problem. Some problems are unseen and some are seen… it’s challenging but it’s life. Positivity is the only thing that will support you. I think all parents of special children should share their experiences so that people can learn from each other’s mistakes and successes,’ says Seema.

‘The most important thing is acceptance. Yet, train yourself to let go. It’s tough. But if you train yourself to let go, you’ll be teaching them the skills that they need to move away. You need to step back. The sooner you start treating them like adults the easier it’s going to be,’ says Ashok.

‘As parents we need the support of other parents like us. My husband and I have learned to take time out for each other as a couple. You need to be doing stuff in your own lives that fulfils you as well, because if you put all your energy and hopes on your child, it’s going to be very tough,’ reiterates Neelu.

‘By making your special child a part of your life experience and helping her create her own life experiences, scripting her own narrative — she will learn to own it in due course. Don’t overpamper and don’t overprotect, it does sound difficult, and it is,’ says Rohan.

And in unison they agreed — no silence around diversity. There should be no isolation. The mantra has to be integration.

(Published with permission of the author and publisher Aleph Book Company)