By Srinidhi Raghavan
“For us, this life of isolation is the one we’ve always known. Now you, facing similar restrictions, can place yourselves in our shoes – and what better time to make a collective effort to change the situation for the better!” says writer and youth advocate Maria Alexandrova in a piece for Voices for Youth. As a teenager with a disability, Maria knew and was able to cope with the effects of the pandemic – lockdowns, isolation, staying home from school in a way that showed that this experience was not new.
Through the pandemic we have been seeing a range of experiences surface of people with disabilities and many echo this feeling – that isolation, staying at home, inaccess is not new for them. But there is much to understand as we unpack what Maria is saying. Children with disabilities: who are they? What are their needs? Where do we interact with them? And how has this pandemic unfolded for them? A lot of disabled literature and knowledge points us to this idea of the difference between impairment and disability. The impairment exists within an individual’s body but disability is the result of the negative interaction between the person with an impairment and their social environment. This requires us to challenge the idea that the impairment itself is the cause or the justification for the negative reaction.
Who is a child with disabilities?
In our conversation with the Founder and Managing Trustee of ASTHA, a cross-disability NGO working directly with children and persons with disabilities, Radhika Alkazi, she stressed this point of difference. Even as she pointed out that India by law recognises 21 types of impairments currently, she defined children with disabilities as: “It is all the factors, the economic, social and political and every other factor that is present in society, that interacts with the impairment and prevents a child or enables a child to participate in society. That’s what it [disability] really means. Because very often we focus on correcting the child. What I’m saying is it is all around us, all the factors that we need to take into consideration.” In many ways, investing in children with disabilities means to invest in improving our environment and expanding the many ways in which we interact, engage and learn from each other.
She goes on to explain the many ways in which children with disabilities need to be supported – during the pandemic and otherwise. She says, “For example, she [child with disabilities] may require some therapy, she may require something else or medical support that she doesn’t get. We have an early childhood system in our country, the ICDS, the anganwadi system. If she’s excluded from that system, so sitting with all the other children, playing, talking, discussing, getting nutrition, and then the school system, which also if it does not easily take her in or does not know how to teach her, then it’s not the impairment that is talking to us it is really our inability to understand what this child’s specific needs and requirements are and to fulfil that within our systems.”
Pandemic worsened the situation
These inequalities, these barriers were present before the pandemic reached our country. The pandemic has merely exacerbated these barriers for children with disabilities who were, as Radhika says, already at the margins of society. As the pandemic forced our education systems to turn into remote learning spaces, we are discovering that they can be more alienating than classroom learning. For those who prefer tactile, for those who might need sign language or physical texts, for those without access to notes in braille and so on, it has been not useful and definitely not engaging. Education is an important part of the life of a child with disabilities. It is crucial and in many ways provides them handholds for the present and the future. These steps taken backward in their lives can be very damaging.
Of course, when it comes to the child with disability, education is merely one aspect. Radhika, who has been working with children with disabilities and their families for decades, explores the effects of the ongoing pandemic on children. She said, “I think you know the pandemic has had a huge effect on children with disabilities because it has made things extremely difficult for this child and for the person with disability. Mainly because, you know, all systems shut down. So for example the medical system shut down so people requiring medication or any kind of intervention have not been able to get it and that has caused a setback.”
For many children with disabilities, school is not the only place they go to. They have extra therapy both psychosocial and physical, doctors visits and much more. This disruption can have varied effects on their mental and physical health. The increased isolation might be hard to understand for some children, others have reported being confused by the need to wear masks or not touch others. For children with disabilities, especially blind, wheelchair using, explaining how touch can spread coronavirus can be hard to accept because touch is the way in which they engage with people. The lack of exposure to their friends, the sudden break in their routine, the need to be covered all the time, the extra caution required while engaging with the world – are few of the difficulties children with sensory impairments could face.
How can we move forward?
Maria, youth advocate with disability also says: “If children and young people with disabilities are seen as individuals, not as diagnoses; if we are recognized for what we can do and society invests there – in the solutions, instead of what we can’t do and being over-focused on the problems – then you will be blown away by our potential.”
Yet we still need to navigate the inherent power equation between children and adults which is so stark; especially as we as adults, parents, teachers, find it difficult to accept that children have valuable opinions or perspectives. In their book Jugaad (‘hacks’ in Hindi), the child developmental centre – Ummeed, puts together the responses of young people, some who live with disabilities, on the topic of mental health and coping. The answers are varied and showcase the many ways in which children envision our world. Words that jump out when you flip through the book: Inclusive. Empathetic. Support. Respect. Celebrating. Diversity. Equality. Freely express. This process of identifying agency of children in responding to the challenges in their lives is concisely explained by the curator of that project Yashna: “These jugaads are located in their ‘little’ doings of writing poetry, crying, reaching out to friends and family, drinking chai, turning to nature for support. These little doings, which are not-so-little, are prudent ways in which they respond to difficult spaces, a world that sometimes threatens their mental health.”
In her piece, Prathama Raghavan, developmental psychologist, speaks to the need to listen to children as experts of their lives. She says: “In my 12 years of working with children and young people with disabilities and differences, it has been evident to me, that children and young people shine the spotlight on the things that are not okay with the world, things that the majority of the adult world would rather not look at, or is forced not to look at in order to simply go on with life. Children and young people just need to be offered the opportunities to show us this.”
There has been a lot of literature and wisdom that suggests that children have important things to say and even the United Nations Convention on the Rights of the Child specifically address the need for us as adults to pay attention to children; to seek their opinion and allow for decisions to be made with their consent. As we build back our world in these times, it would be essential to listen to children and build a world that is full of the hope they bring into it. To move them from the margins to active participants in our society.