A critical juncture

Posted by Jan Madhyam Team, New Delhi

Jan Madhyam (JM) is an NGO working for the inclusion of children with disabilities from marginalised communities. It is active in the NCR area for almost 40 years. Most of the children come from migrant families and live in slums – and look just like the many sad images we saw of people walking home with their belongings, children and elderly.

Aya Nagar, Mohammadpur, Paharganj , Govindpuri is where Deepak, Sonu Maurya, Pooja and the others live. These are “our” young people and children with disabilities. Our community.

Jan Madhyam family

Most of our community have been left in a critical condition with the lockdown. And for us…. work as we knew has been put on hold by the exigencies of the current pandemic. Unexpected? To say the least!!

Jan Madhyam’s work is designed to bring people together, to work in depth, individually and personally. Being told that we must stay away from each other for the good of the community is especially difficult.

The forced pause on our time, provides a rare and amazing opportunity to take stock, prioritise inventories, and enact positive and lasting change. Like so many others, we have spent time re-tooling our skill sets in other ways to meet the immediate needs.

Chat message from JM staff [“Formed a group for all students. But only 10 have android phones”]
JM staff meeting

Technology has become our best friend and ally. The smart phone, the camera, the YouTube channels, all provide the community and us with an alternate arena for distant but personalised communication. Daily meetings (on Zoom), weekly updates on group calls, and sharing on video chat platform, networking with resourceful contacts for activating e- ration coupons, sending fundraising pleas… all on the phone. WhatsApp groups buzz with daily updates and sharing of teaching resources.

The two-way daily communication helped keep the motivation of the team up and slowly each one of us found our bearings. Better still, we found a new skill – “making video lessons on your own phone”- and embraced it. If you can’t do it (not all of us can), ask your children to help! Share it with your peers. Get feedback. Improve it. Use it.

It is working both ways. “What is Pooja doing?” A set of photos follows. A picture is worth a 100 words. Parents share pictures of the activities at home. It gives us a window into their reality.

Before the lockdown, we had taught all of them to make masks, elbow-sneeze and wash hands thoroughly. Parents were eager to show us Pooja washing her hands – albeit with half a mug of water (there is a shortage), wearing a mask and helping around the house. They were eager to keep in touch. A touch of normalcy in social isolation, confusion and uncertainty.

Hand-washing at home (above) and mask making at JM (below)

We saw the challenges of not having any material at home (even paper and crayons, scissors, glue). A smart phone is a priced possession – not every family owns one. Certainly these are luxuries when your ration is running out. We know that when money ran out in the family kitty, the disability pension helped [read our post A child in Blessing!]! How “low-cost” can we get? It is a new challenge. We developed a series of low cost recipes to prepare and cope with hardship. These recipes used peels, but were creative and tasty.

Sharing low-cost recipes

We had to rise to the occasion and find the resources among our own members and supporters to make sure that no family with a disabled child in our community went hungry. We helped them to get e-ration cards, access the government schemes as their right, link them to all distribution centres, we even took on that role ( distributed ration). Goodwill among the vendors in the village and slum areas, stood us in good stead. Having localised workers (living in the same area as the parents) was also was very helpful. Jan Madhyam’s work builds a high level of empathy – this is an asset in such times.

Home video clips shared by JM parents

Video-based parent meetings upheld a sense of community based sharing. There have been regular guidance calls by the occupational therapists, “q and a” sessions with parents. All this gave us a sense of direction and purpose.  Parents struggle to find structure for their disabled child at home. They also sought guidance and information on managing  this unforeseen situation. “How do I manage the sulking, the melt downs, the frustration and the anger?”. We will soon add counselling sessions on the phone.

We have been horrified at the large number of cases of violence within homes and child abuse reported. It is a sad reflection of the physical and psycho-social conditional our families are living in.

All of us are having to face uncertainties at all levels. For NGOs,  it is the future of funding in a shrinking economy. For the parents, their wages, jobs, rent, debt and food are the main insecurities. There are additional cost concerns – therapy, medication (for children with epileptic conditions, parents with diabetes) and other health issues.

However challenging it may be, we cannot waver in our intent to bring “inclusion” – our main goal. It is time for the tenuous plans of diversity and inclusion to become substantial actions. For the progressive steps toward environmental sustainability (which we dove into long back) to become a wave of definitive practices reflected in the community.

How and when?….Time will tell.

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