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Arpita: I’m so glad we are finally doing this. We’ve been speaking of this for awhile now! I remember how especially when I was researching and writing for the episode on the urban migrant worker crisis, which continues to unfold even today, there were these images of people walking on highways and streets in the blazing Indian summer, and alongside them were children of all shapes and sizes, from toddlers to teenagers. I remember this thought just getting stuck in my head that these children were in those photos but there was little else being said or written about them.
Deepika: You’re right and I remember this image of a little tired boy of maybe five or six exhausted and sleeping on a suitcase which was being dragged along by his mother – it went viral and caused some concern about the state of children – but frankly there just doesn’t seem to be enough conversation on what this pandemic has meant for children.
Arpita: And I think for us it just didn’t sit right, as both of us have worked with children and they form such a huge part of the reason and motivation we have of doing what we do – and both of us felt the lack of their presence in the ongoing conversation deeply.
Deepika: Yeah definitely, and over the past few months we’ve been looking at how the Covid-19 pandemic has made visible deep inequalities of gender, class and caste – fissures that have always existed that are now plain to see. Strangely though we don’t easily see how age is also an important axis of determining experience and today – even though in the short period with the limitations of lockdowns we could not organise a conversation directly with children, I was able to chat with someone who works closely with children who are more vulnerable during such crises due to not only their age but also because of forms of disability and due to poverty.
I spoke with Radhika Alkazi, founder of Delhi-based NGO ASTHA which works with children with disabilities and their families, to make sense of the current reality.
Radhika: I’m Radhika Alkazi and I am the founder and managing trustee of an organization called Astha that has been working with children and people with disabilities and their families, in Delhi, and in the surrounding areas for the last 27 years now. Our work is largely in the urban slum areas. We work in communities as a community-based organization. We work with children and people with disabilities and their families in the communities. Apart from that we also do a lot of policy work. We look at how laws and policies include children and people with disabilities. We advocate for that, and that work happens across all states with many different organizations and alliances that we work with.
Deepika: You know the interesting thing I often realise is that not a lot of people necessarily understand the width and range of the word ‘disability’, and just how many people fall within these various categories.
Arpita: Yeah it’s also odd how you can go through your entire school life and hardly ever meet another child who lives with disability and the same is true for most workplaces – so in many ways a lot of us – quote unquote able people – can go through life being pretty distant from and unfamiliar with the conversations around disability.
Deepika: While that’s true, it’s not because the number of people living with disabilities is small. Rather it’s because it’s not always visible and even when it is, there is so much segregation which leads to invisibilisation. As per Census 2011 in India, out of the 121 Crore population, about 2.68 Cr persons are disabled. That’s 2.21% of the total population! And if we’re talking about children specifically, an estimated 7.8 million children under 19 live with disabilities which is 1.7% of the total child population. And what’s powerful to note is that as per a 2019 UNESCO report, this figure is much lower than international estimates, leading to questions about the disability measures used in the Indian census.
Arpita: And I was also reading that since disability is self reported, it’s well acknowledged that official figures are low because it continues to be stigmatised in the larger community and families often don’t want to admit or disclose that a child has a disability.
In many ways we are still sort of evolving the idea of disability. I think in 2016 there was quite a massive change in how Indian legislation understands it.
Deepika: Yes, I remember in 2016 the disability legislation changed to recognise 21 disabilities where it was previously just 7. Radhika explained this in detail.
Radhika: Children with disabilities are children who have some kind of an impairment, and that impairment could be difficulty in seeing, in walking, in moving, in hearing and many other things; in thinking, understanding.
In our country, we have a law and we have recognised 21 impairment groups to be officially what you would call disability in our country. These would include kids with blood disorders like haemophilia, thalassemia. They would include children with speech impairments. They would include children with vision impairment, hearing impairment, movement difficulties and many others. There’s intellectual disability, there can be other mental disabilities. So the mental disabilities includes a whole range of conditions or different kinds and ways of being. For example, you may have autism, you may have intellectual disabilities, you may have mental illness, psychosocial disabilities. So all these come under that rubric, and yes, it could be both. But again, I’d like to say it’s not just the condition.
What tends to happen is we tend to think of that child with disability in a very medical lens that you know, it is only the difficulty if seen, but it is really a question of what is around, what is the context and how different factors interact with this difficulty in seeing, or difficulty in walking or moving that affects the participation of this child. And that is what a child or a person with disability—that is what disability is all about.
Arpita: You know when she said this bit about how there’s a need to think beyond the immediate medical condition and recognise how factors which disable kids can equally and often lie in their environment – I was at once reminded of our conversation with the good people at iCall which functions on the psycho-social approach and speaks to how intimately we are connected with the world around us and how our lived experience is a complex outcome of our biological heritage and our social locations of caste, class, gender, age, etc.
Deepika: Yes, and understanding that is very important because we don’t exist in a vacuum. It’s also how Article 1 of Convention on the Rights of Persons with Disabilities (UNCRPD) describes children with disabilities. It says: ‘Children who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.’ A key part of this definition is ‘in interaction with various barriers’ and Radhika explained what these are and how there are often economic, social and political facets to it.
Radhika: Yeah, so really it is, you know, when there is a child who has some kind of an impairment and right from the beginning, if she doesn’t get for example, services that are required to enable her to grow properly, or to flourish – nutrition services or other kinds. For example, she may require some therapy, she may require something else or medical support that she doesn’t get. Or for example, we have an early childhood system in our country, the ICDS, the anganwadi system. If she doesn’t, if she’s excluded from that system, so sitting with all the other children, playing, talking, discussing, getting nutrition. 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. So that’s what I’m talking about contexts and the kinds of institutions that we build – they are not often in a way built in a way or designed in a way, that they accept diversity. All kinds of diversity including this child.
Above all I think you have to understand she is a child. And she needs all the things that a child needs. So the care, the love, the playing with other kids, you know, just goofing off, just all the things that other children do, as well as a vast kind of array of experiences. Because that is one thing I’d like to say that very often kids with disabilities miss out on because they are isolated often and shut up in homes. And so that whole range of experience that enables a child to learn, to learn the rules of a society, of a community, those often get missed out.
Deepika: So things like access to nutrition, medical services, assistive devices, physiotherapy, learning- these are rights a child is entitled to. They’re essential for the child’s growth and development. And this is not me saying this – this is embedded within the UN Convention on the Rights of Persons with Disabilities. But very often because of how disability is viewed socially, children are hidden away or there is a tendency to segregate and separate from other children. Then the bias compounds how effectively children can participate with their peers, be part of public spaces and be seen.
Arpita: You know I think it’s important here to point out how disability rights activists see this more as a question of building the world for inclusion and diversity instead of laying down the framework that the disabled are somehow ‘broken’ and ‘apart’.
Eli Clare, a writer and disability rights activist, puts this very eloquently when in one of his essays he says this. It’s a bit long but stay with me. I feel like it’s really beautifully put: “Disability activists have for decades said loudly and clearly, “Leave our bodies alone. Stop treating us as broken.” We have defined disability as a matter of social justice—disability residing not in paralysis but in stairs without an accompanying ramp, not in blindness but in the lack of Braille and audio-recorded books. Disability itself doesn’t live solely in depression or anxiety but rather in a whole host of stereotypes and damaging material realities, not in dyslexia but in teaching methods unwilling to flex, not in lupus or multiple sclerosis but in the belief that certain bodily conditions are a fate worse than death. In this redefinition, the disability rights movement joins many other social change movements, ranging from Black civil rights to the women’s movement to queer liberation, in the on-going work of locating the problems of social injustice not in our bodies but in the world.”
Deepika: That’s really powerful, what he says about disability residing not in bodies but in the world. And, yeah, so as we’ve been seeing the pandemic has further exacerbated these social injustices and access to very basic rights and services.
Radhika: I think you know the pandemic has had a huge effect on that because it has made things extremely difficult for this child and for the person with disability. Mainly because, you know, a. all systems shut down. Yeah, so for example the medical system that shut down. So people requiring medication or any kind of intervention have not be able to get it and that has caused a setback a lot.
The education system, for example. Then a system, you know keeps you at its fringes in any case, at the time when the pandemic was not there, now with the pandemic, we are finding that that it’s that inclusion has gone two steps backwards. Because this child will be the last to be thought of when the education system, for example, online. Suddenly everybody’s stopped but online education, but nobody is really seeing that if a child does need a little bit of extra support or a different kind of support, yeah, how will I organise my online teaching to accommodate for that? So that, we have not reached that stage because we’ve been so, as a nation and I’d say perhaps as a world we’re panic stricken, you know, and we’ve been kind of scrambling to find ways to reach out, to do you know, to educate our kids, to get back the education cycle going. But for this child who may need for example, a lesson in sign language. Now that may not be available for her, online. And for the school that was not already ready, now to be ready is very is far more difficult. So what in effect what I’m trying to say is that the pandemic has struck us at a time when we ourselves were not ready for this child and therefore it is taken us many steps backward.
Arpita: The disability rights movement has for decades been advocating for children with disabilities to have access to learning and education, for public spaces, systems and institutions to be inclusive. In many ways, the pandemic has now potentially set this back as being relegated to home through long lockdowns and the economic crisis that has climbed on the back of this pandemic – has meant multiple complex repercussions for these kids.
Deepika: A child respondent in a report published by National Centre for Promotion of Employment for Disabled People titled, Locked Down and Left Behind, and one of the child respondents describes one of the fallouts like this: “I am a child with a disability and my education has suffered a great deal because of this lockdown as I am unable to go to school. I am now dependent on my parents for my lessons. I have other siblings at home as well and their studies are prioritised over mine as they do not have a disability.”
Arpita: You know whenever I hear such narratives it reminds me how important it is to listen to children and have them be actively engaged on such conversations – at the end of the day they have unique knowledge of their own life experiences which enriches how we, as society, can then begin to move towards systems that are indeed more inclusive!
Deepika: Absolutely, in fact another study I came across also shows how our current systems need serious rethinking which could be so augmented if it included the actual experience of children. According to this study conducted by community based organisation Swabhimaan with 3627 respondents, 43% of children with disabilities are planning to drop out of studies due to difficulties faced by them in online education. Teachers also reported that 64 % of students did not have smartphones or computers at home. And this is just the tip of the iceberg. For many families, like you mentioned, the struggle at the moment is to survive.
Radhika: This is the time when families are just scrambling at least the families I work with, the majority are scrambling for the basics, just for food. Food security is about one of our biggest issues at this time. So at a point like this it becomes very difficult to focus on the requirements of a child. So these are the ways in which children, particularly those requiring medication, requiring that accommodation, you know, a little bit of change here, a little bit of change there, a different kind of language, a different way of teaching – that’s where people, children will be suffering and are suffering.
Arpita: This falls right along the lines of what was being reported by multiple civil society networks and organisations as the humanitarian crisis triggered by the pandemic has unfolded in India. One survey I remember, quoted that potentially 8 in 10 daily wage workers in urban areas had lost their jobs due to the lockdowns; and, multiple surveys shared the immense experience of crisis where a majority of the workers surveyed shared having barely any savings or food to last them through the week – with no thought really about the many many months ahead.
Radhika: Now in a situation like this where food itself is so scarce and there is hardly any there at this point of time to have food that is nutritious for the child and that the child can eat or maybe the child requires to eat at least thrice, you know, rather than twice a day. Those things become very difficult. As it is, there is a very strong linkage between disability and malnutrition. Many of our kids cannot go and get the food for themselves. So they wait to have somebody assist them. For example a young child with vision impairment may not know, may not be able to get to the food like other children will go to the kitchen or open a box and take that. But this child may not be able to do that.
So these become little little little barriers that when you already have a shortage of food. For example, we’ve had situations where you know, in Delhi government was giving out food – two meals a day in schools. And many of our families are single parents, a single mother with two children with disabilities. Now, she could not reach that school. To get there, to then if you reach there, can you say: I need two more plates because I have two kids sitting at home who need that food. So these were the, this is not one instance. There are many many instances like this. What I’m trying to say here is that they needed to have been a little more thinking. Although us giving food, our government giving food, two hot meals in the government’s schools was a wonderful thing – saved many people from starvation. But when you have specific interest groups, like for example this child, yeah, then if you need to think a little bit more as to how access can happen. Therefore, what I’m trying to say is that access was very very and continues to be be very very difficult just get the basics going for this child.
Arpita: What she describes clearly illustrates the multiple structural and systemic barriers at play. So even when food might be provided by the government- does the family of a child with disabilities have this information? Do they know where to go? Is there someone to care for the child while the parent or caregiver is standing in lines for food for children who cannot physically be there? These are all very real, immediate access issues that have to be addressed when we’re talking about specific groups and their needs.
Deepika: Yes, and that’s just one lens. Radhika’s organisation Astha conducted two consultations with other groups and organisations from the beginning of the lockdown in April till now, and found that access to healthcare facilities, medicines, social security and lack of information were other key issues that families with disabilities were facing. The report also observed: ‘Persons with psycho-social disability, persons who require medication, persons who are connected with counsellors on a regular basis are impacted by the lockdown across the country.’
They also documented what has been working well based on their ground-level experience and found that community-based systems and local support has had a big role to play in responding to the needs of children.
Radhika: Where you will see organisations working that have been able to bring families together or young people with disabilities together, or where people with disabilities have groups what we called DPOs, Disabled People’s Organisations, or people just getting together—you will find that there is a lot of support and support structures are there, but this is few and far between.
For example, in my own organisation, we’ve had instances of a parent supporting other parents, you know, getting the medication for three four kids and seeing that, but that happened because the parents over a period of years were constantly meeting in meetings and things like that and got to know each other and formed small informal support groups. But the large majority of children and people with disabilities don’t have these structures and support structures.
Because we work very intensively with families and children where we work, we are very aware of, you know, needs that are there and we were able to immediately reach out through the phone and whatsApp and all these various methods. But what I think one of the big questions that did come up was: where are the other children? Okay, we work with 250 families, but that’s not enough. There’s a whole city out here and how do we reach out to more children and more families whom we know will be in distress. And that’s when we started looking for lists.
As I shared with you, we reached out to the Hunger Committee that Delhi had set up. We reached out to the Delhi Commission for Protection of Child Rights. We got support and permission to reach out to the anganwadis and the anganwadi workers were able to connect us with many many young children, older children, even children with disabilities in their communities. So that gives us an idea that actually our frontline workers, people who work with closely in communities, do know the community very well. These can become spaces where actually the community, a sense of community is also built. So what we are going to try and do is now start connecting families.
Deepika: What stands out is what an important role these connections play and how important community-based systems and local networks are. And I think the pandemic re-emphasises that in many ways. Because when physical movement is curtailed, your community automatically is those closest and nearest to you and you need this support because vulnerability has also increased. It makes care and community that much more important. Radhika also spoke of ways in which children are being supported in this time so they are connected to their peers.
Radhika: The other way is reaching out to children and seeing that they are part of larger groups of children. That’s one of the strategies that we use a lot is we don’t work in isolation with the child with disabilities. Very early on in our work we realised that I was just isolating the child even more.
So we bring in all the other children and we do a lot of work with all children including children with disabilities, together. And I think we are going to need to do a lot of that, so that as they grow up, they grow up together, and they grow up with support structures around them. We need to build those structures now very much, even for children who are going to schools. One of the things I found is being very useful is just using the phone. We’ve been able to reach out to all these families just through the phone and we’ve got connected and we won’t stop there.
In a small way, what we are doing is we are creating this craft packets, you know, we have creating small packages with lots of different craft materials that children can do together and include this child also. So in and around the family, there are always brothers sisters, you know children from the next door house and we are encouraging them to use these, create small things, along with this child. Because this for use she is at the epicentre of it all. So with her at the centre, which is normally not the case, other children can gather and make some of these things. We understand that many of our kids and I’m not only talking about kids with disabilities, need to have lots of things to do at this point. It is not just this online things. So as the open up is happening, we are making every effort to get to children and to support them with activities that they can do in small groups also. So making a craft project -so the older child can also participate, younger child can also participate, and this child can also participate.
Arpita: Pandemic or not children need to play, laugh and just be children. Especially when the option of going to school, or therapy or accessing others services is not there. The onus of caring for all these developmental needs of a child has now shifted indoors to the home.
Deepika: And therein more pressure on parents are caregivers. So where a child could access a teacher or therapist before, now these care responsibilities have fallen to them entirely. Radhika mentioned how they are working with families.
Radhika: Now it’s a question of us also sharing with the family which we should have actually done earlier also, which we used to but not to the extent that we’re doing today. So yeah, so the way that we can support the parent is maybe also giving them what we are doing is making little videos: ‘aise baithana hai’, ‘aise karna hain’ (‘make her sit like this, do it like this’). So talking to the family. So when you see something visually, it is much easier to do. So if you can package and provide that support, for example therapy. Now, we do a lot of therapy with children. At this point, it’s not possible. But one thing we always do is teach the family, because they are the ones who will actually do it. But now we are making small videos and we can share with the family and say, ‘yahan aise bathaiye, ya yeh aise kar skate hain’ (‘make them sit like this or you can do this like this’).
Also, I think very very important and something its taught us is, you know, parents have a lot of knowledge. We sometimes in all our teaching and in our education system, we disempower the parent. It’s only the teacher can tell you know. No, I ask the parent: what are the stories that you know? So how many actually people ask a parent: aap ko kaun si kahaniyan pata hain? (which stories do you know?) Talk to your child about what you know, give your child the kahaanis (stories) you know from your own village, from your childhood and a whole fund of knowledge is there. So we have to tap into knowledge that people have rather than always thinking that we are the ones with the knowledge that has to be given. I don’t believe in that. And more so today I believe less of that. I’ve always seen families come up with the most fantastic things. But I’m not going to paint a rosy picture because I don’t think that enough of this has happened.
Arpita: I feel like we keep circling back to this, but it bears repetition because like she’s saying, it’s only possible to address the multiple needs of a child when the basics are taken care of. That’s what she means when she says economic and social contexts have to be taken into account.
Deepika: Exactly, and that’s where social protection schemes come in – it’s that critical safety net that families need to be able to ensure that they have access to food rations, medical facilities, pension schemes and disability certificates. Because when families are safer, so are children. Yet, as she mentions in a recent survey that Astha conducted, not even half the families surveyed had access to these protection schemes.
Radhika: Just now we’ve done a detailed study of these 1600 people. So it’s like a random sample that we got. People that we reached out to all through the city of Delhi and the NCR and we asked each family whether they had ration cards, whether they have a disability certificate and pension, and the majority, so only about 40% had disability certificates, even fewer had pension, this social protection support that is supposed to be coming to them; and very few actually had ration cards, for example. That’s another thing I think we have not really looked at the disability sector but we really need to. This pandemic has drawn our attention to the fact that we need to look and see how many people have ration cards that they can use actually to get food.
In our sample because it’s largely a migratory sample, it’s people migrated from different parts of the country to Delhi. The data says it’s very very few: 15% actually had ration cards. So the large number of people, families and children, and because we reach out to children, a large part of the sample is families of children with disabilities and there are also adults, but the majority is children with disabilities, that access is very important.
Therefore we have to think that if access to this basic social protection is not there, then for a very young child yeah, so 0 to 6 if you think – it’s the time when families are just coming to terms with the fact that a child is having a difficulty or is slightly different and they’re trying to understand, so they’re not going in for entitlement and things. They’re not getting there at all. So at this point again, there is really nothing that targets this child. So we have to think very carefully because this is your data that tells you, and the NSSO gives us a very very clear data set that hardly anybody is getting support from the government, very few people have social protection certificates.
Arpita: This points to the larger structural issues too of who gets left out of planning and policies and remains invisible, and children feature right up there. Even before the pandemic this was evident in successive budget allocations to the Ministry of Women and Child Development, and the crisis has made the gaps of investment and implementation glaringly visible.
Deepika: And yet it’s not as if it isn’t possible or that states haven’t been able to respond. There’s evidence of what’s working also. Take Kerala for instance- right from March when India went into lockdown, the government was delivering meals to homes of children registered under the midday meal scheme. Radhika also gave examples from other states and their responses.
Radhika: Giving of information and the running of help lines. Help lines have been a very useful thing. In Tamil Nadu for example, our colleagues from Tamil Nadu told us that the helpline worked very well. The Disability Commissioner’s Office was very very proactive. And in the helpline, they also included, you know, sign language, so reaching out through sign language and they got about 7,000 calls in a matter of 15 days or something like that. So they were able to reach out.
Deepika: She added that what this time has also brought up is the number of young people, volunteers who are working with civil society organisations to ensure that the most vulnerable are reached.
Arpita: And it’s again something that we saw at the time that migrant workers were walking back home- that there were also people coming out of their homes to cook, feed and support. In some ways, that is a silver lining in this crisis.
Deepika: I think I have to add that often when one is working alongside children, the children themselves are the silver lining – they embody hope! And we’re living through these difficult times when much doesn’t seem right but maybe in some ways the clarity that the experience of this pandemic brings is that we need to do things differently, and that we need to raise our game and do much better by our children.
I’m reminded of one of Nelson Mandela’s quotes where he said, ‘There can be no keener revelation of a society’s soul than the way in which it treats its children’. It rings as true today as when it was written. I want to leave you now with something Radhika shared about how she envisions a city that cares for and is a safe space for the most vulnerable – for children.
Radhika: Today in a world where we are increasingly becoming narrower and narrower in our acceptance of diversity, all over, the world. And I think that we need to really break those barriers and I’d like to be in a city or imagine a city where you know all children and people can you know access any space any irrespective of who they are, what kind of abilities they are supposed to have, and in order to do that though, you need to design things too.
And I think that’s where I mean, I really like a city or a world where things are designed in a way. Because inclusion will not happen or equality will not happen. We have to start thinking much more universally how you can design spaces, services so that all kinds of people can access those spaces and services. And where there’s a lot of, you know, child friendly, I know the term that’s used very often, but a city that is friendly towards children. It’s very very important and to all children, including children with disabilities, which again would mean that you know, all the parks are open and we have spaces where kids can go to and play actually – that are accessible that all services are open. All children are going to the anganwadi and this child is also there. There is no battle to get to these places, so less battle, and more inclusion.
Outro: To know more about Astha’s research and support the work they’re doing with children with disabilities, visit asthaindia.in. You can reach out to us on our website http://www.thecuriocitycollective.org
In our bonus episode, we chat with Kavitha Krishnamoorthy, founder of Kilikili in Chennai who has been working to build inclusive play spaces for children with disabilities. Don’t forget to listen in on Anchor, Google or wherever you listen to a podcast.
This episode was made with the support of Srinidhi Raghavan and was produced by The Bangalore Recording Company.