Radhika Alkazi on Education, Nutrition, and Disability in Urban Slums

In every city, there are neighbourhoods with small rooms, crowded lanes, and families who are doing their best with very little. And in these homes are children, including children with disabilities. This film looks at what life is like for such children in urban slums. It follows their everyday reality: the hunger, the worries as well as the small victories and the strength that keeps families going. 

Let’s understand why these lived experiences matter, as when we understand, we stop guessing and start responding in ways that are real, useful and respectful.

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What unique challenges do children in slums face, and how can we raise awareness or work to address these issues?

So, children in the urban slums uh face unique barriers.

One is the where of their, where they live, you know, very often they live in small spaces without ventilation, without access to water, without access to toilets and the whole, um what we have seen also in the recent years is this whole climate change and the change in temperatures, so, they are really exposed to, for example, the extreme heat that has happened in, in our own country in last year, the extreme heat or extreme cold, they are extremely vulnerable to this because they are living in unsanitary conditions and their, their, for example, in Delhi, most of the families are migrant families, they have come from UP, from Bihar, from Haryana in search of work and very often in search of rehabilitation for their child with disabilities.

So, they do not have extended families here, families are small and nuclear, so, there is very little support that the family has.

Uh in the urban areas, accessibility is a big, big issue, so, accessibility, pollution uh and extreme poverty.

For example, during the COVID-19 crisis, humanitarian crisis and the lockdown, when everything shut down, um the situation of children with disabilities was extremely difficult.

What we realized immediately in our area, where we work, in the urban slum, was, families didn’t have any food with them.

There was no reserve food because families don’t keep rations for the whole month like many others do.

And so, the immediate crisis became food and there was a lot of work at that time, as you know, all over the country, not only by us, but all over the country, but, of distributing food, uh which became the first and most important necessity, uh we have community workers who work in the community, who live in the community, and parents, families, at that point of time, we realized the importance of families knowing each others because there was a network that was already there.

And so, people were, could tell each other and inform the organization that so-and-so has a particular need, so-and-so has a particular need and that is the kind of work that evolved, but for children with disabilities, schools and education, and there is a lot of research to, to say that, education, they became one of the most vulnerable sets of children as far as access to education happened, because, as you know, everything went online, and many of these online classes were not accessible to children with disabilities.

At that point of time, ASTHA, along with the Right to Education Forum in Bihar, ASTHA has been part of many of these large forums, you know, that talk about the right to education, the right to food, the child rights, you know, associations, we did a study on what is happening to children with disabilities in five districts of Bihar.

And again, children going into the government schools.

So here again, we asked many, many questions.

And you cannot talk about education unless and until basic things are there.

And here again, the data that we have shows that there was immediate loss of food.

People had to borrow money, most people had to borrow.

There was lack of money, people lost their livelihoods.

Small people were doing, the families were involved in different kinds of livelihoods.

They had no land but, you know, selling things, small shops, all that stopped, so there was no money coming into the homes.

And the child with disabilities, they did not know how to educate the child, what to do, because there was no connections with the school at that point of time.

And the many, many barriers that happened, you know, in trying to suddenly see the child, try and see, you know, what is happening at home and not being connected for the child, not being connected, not going, not understanding, why am I not going to school?

For many of our kids, kids with intellectual disabilities, kids who are deaf, uh just understanding that, you know, school is shut and why it is shut, these things became big, big issues.

Uh and we’ve done a study, this is called “COVID-19 Mahamari Ke Dauran Bihar Mein Samaveshi Shiksha Ki Stithi” (The State of Inclusive Education in Bihar During the COVID-19 Pandemic).

So this study really tells you in great detail uh, we interviewed children, we interviewed their families, the, what they used to do before the COVID-19 uh struck, in education, what happened during COVID-19 and how they would want things to happen now.

So this is a study that is already there and I think it could be, today in India, we need to expect a lot of emergencies and I think it’s very important that we build that understanding of what strategies work during a humanitarian emergency.

Another important thing today that our children have to deal with is disasters uh and climate change, and how, what kind of strategies do we and families need to be ready with today in the event of such a big change.

Uh in order to understand that better, we have tried to document what happened during COVID-19 and how some community based organizations, actually the strategies that they had already built, for example, in Odisha, there’s a wonderful organization Sadhana, and they had already in the Mayurbhanj district built so many strong DPOs, Disabled People’s Organizations, these Disabled People’s Organizations were so strong, they got into action immediately, and they were able to see that all the barriers that were there, they were able to actually support.

There is an example of a father who has a child with thalassemia and who had to cycle 20 kilometers for her to get her blood transfusion.

How difficult it became during the COVID-19 emergency for them just to get somebody to donate blood so that their daughter could get that blood transfusion that she needed on a regular basis.

Uh so these were some of the, there are many, many stories and many, many strategies that are already there, that are being practiced in our country, and I feel very strongly that we need to document them so that, A: Children with disabilities can continue their education.

But we cannot look at education in isolation, we have to look at the whole context, the, the food, uh other necessities, basic necessities have to be there if edu…if the Right to Education is going to be realized.

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How crucial is nutrition for children with disabilities, and how do you educate parents and caregivers about its importance?

As you know, there is a very strong link of, with disability and malnutrition.

Most of our children, India has one of the largest numbers of malnourished children in any case.

But children with disabilities, their vulnerability to malnourishment is higher because sometimes children with disabilities may have feeding difficulties, there may be other barriers that they are facing, they…their access to food, the ability to go and get the food that you want to eat is sometimes not there.

So, so many difficulties that, this relationship and we find that in the communities where we work, the majority of children with disabilities are malnourished.

Malnourishment leaves you vulnerable to all kinds of diseases and situations like, just like diarrhea in the summer months and in the rain months, respiratory difficulties for children, pneumonia and other, these are real killers of children in general in our country and many other countries, but children with disabilities are far more vulnerable.

And uh so it is extremely important that we, that families know how important that nutrition is.

We have met many many mothers and families in our work in the urban slums where the child is say 7 years old, 8 years old but is still being fed with milk and biscuit because the child has a feeding difficulty and because no one has explained to the mother how to feed the child, how to give the food, how to change from that milk and biscuit which is causing extreme malnourishment to you know, to the other kinds of food that the child should be given.

So our work is really to support mothers and also in areas where food availability is not much you know, it’s not that our parents can afford to give lots of fruits and lots of vegetables to their children.

How do you work on nutrition and health?

So some of the strategies that we have used is, for example having nutrition days.

Every parent, whether it is a parent from UP, whether it is a parent from um Haryana or from Bihar, they have their own recipes.

You know they have their own culture that they bring with them and they have wonderful recipes that are very nutritious, that can be made from materials and foods that are available easily to the child and the family.

So we make food.

So one of the activities is to make food together, nutritious food together and then to be able to feed it to the children so that the mothers also feel that they know.

Very often we try to tell other people what they should be doing, but we don’t bring out their own knowledge, value that knowledge and say you have this wonderful recipe.

So some strategies that we have used in ASTHA, the other is supporting families in the slum areas to grow food.

So uh you will see in many of the terraces in the slum areas or wherever there is a patch of sun a small bucket uh with uh spinach growing on it.

Spinach is easily grown, things that you can easily grow while it will not give you all the food but you can easily cut it up and it will grow again and it will grow again, so simple things that families can grow themselves.

But health is a very big issue and access to health care is a very very big issue because uh families cannot go into hospitals on a regular basis.

We have many many children who have health issues and for example, get fits on a regular basis, need to take long term medication.

For any child who needs to take long term medication, uh having the money to get that medication, to go and get that medication, to see that the medication has been given on a regular basis, these are big issues that you know, when a child is compromised, the health of the child is compromised, that, that families find difficult and need support to be able to do.

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Are there any government schemes in place to improve nutrition for urban slum dwellers in our country?

There are no government schemes say, for urban slum dwellers, for children, uh that children with disabilities, for example, can access.

There are the Anganwadis where very young children with, are supposed to go, get a meal and be taught, uh but for uh, for years and years the Anganwadi system used to exclude the child with disabilities, now some changes are happening and that’s a very welcome move.

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Considering the current efforts, what additional measures do you think are needed to improve the lives of children with disabilities?

So you know, that the Supreme Court has a committee that looks at juvenile justice and all the courts in the high courts in our country have such committees. 

Every year this committee looks at the issues of various children and this year it was the year of children with disabilities.

Uh this is the first time perhaps that our attention has gone to yet another sector that is the juvenile justice and the care reform sector, the child protection sector, um the sector through which many many children get institutionalized.

We have not often talked about it although we have all been extremely worried about the fact that children with disabilities should not get institutionalized and what happens to children with disabilities in institutions, there have been many many studies and as far back as 2011, when the disability sector gave its first report to the uh CRC committee, we had talked about these issues, the issues of children with disabilities having a very difficult time in institutions being abused, being neglected, not having the Right to Education, not getting proper food and more recently, as you know, in the news there have, there has been a news of the deaths of children and people with disabilities in one of our largest institutions for people with intellectual disabilities, that is Asha Kiran in Delhi.

Uh so there is now an attempt, uh through a big project that is being run and through the sector, should I say, to start looking at the laws and at the status of children with disabilities in institutionalization, looking at the juvenile justice laws and seeing where are children with disabilities in these laws, how do the Rights of Persons with Disabilities Act and for example, the JJ Act, the big act, how do they, do they talk together?

When we look at it closely we find they don’t talk to each other.

So there is a large piece of work, we have very little idea in our country or data which says how many children with disabilities are abandoned everyday, how many children with disabilities are trafficked, how many children with disabilities are in child labour, how many children of their, they, you now, how many children with disabilities are actually dying everyday.

What is the mortality rate?

So these questions need to be now investigated, answered.

How many are going into institutions?

The experiences, they never come out of that institution and in institutions like Asha Kiran, they will live there if they come in at 6, the age of 6, and die there.

So these issues need to be now discussed and through this you know, education, all these issues are linked and creation of supports in the community, which our law says, for families and for children with disabilities.

So that’s another whole area, there is now work that has begun in this area and my hope is that in this coming year much more work will happen through various projects.

There is a large project that is happening in India and many of us in our individual capacities will also start looking and researching these areas now.

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What’s one crucial insight about disability that isn’t taught but can only be learned through field experience?

The one thing that you learn, I only learnt in the field is that the child with disability is a child first, nobody teaches you that, because when you are taught, you are taught about an impairment, you are taught about what to do with that impairment.

You are not taught that she is a child, that she has her own moods, that she has likes, she has dislikes, she has a personality, she may be a very bubbly personality, she may be you know, naughty, no one teaches you to look at that and my biggest learning is this that this is a child.

Um I think it’s also a learning that can help people who don’t work in the disability area and who want to work with children with disabilities.

Start, what does a child need?

She needs to play, she needs to be with other children, ask first what does a child need and take it from there.