Chingari Volunteer Update: Ian Jarvis January 2020

It is Ian here, writing again from Bhopal.

This time I flew into Delhi and stayed a couple of days with friends who live there. This was a chance for a little sight-seeing which turned out to be the same for my hosts, Amarjit and Jyotsna with their family as we went to places they had not visited! I won’t bore you with the details but suffice to say that the Akshardham and the Lotus Temples are well worth a visit, regardless of your religious affiliations or none. Then, if you want some peace and quiet in the middle of greater Delhi, the Sundar Nursery fits the bill perfectly. Karan and I could actually hear the birds singing.

It was just after 5 on the morning of the 30th November, a Saturday, that I left the house to catch the 0600 train to Bhopal. It was expected that would be sufficient time to get there well on time. As it happened, the traffic in the centre near the station was Horrendous (capital “H”!) and the driver parked some 100 metres away with minutes to spare. It was a half run/half walk to the platform and it was here that I did something I hate others doing – queue jumping! There was a long queue at the platform entrance where all baggage is scanned and I walked right past everyone and put mine in the machine. I hate to think what all the people thought of the foreigner doing that.

I made it though and sat down a few minutes before we left. At the other end, Bhopal Junction, I was by now able to find the right exit to the back of the station which is the side closest to Sambhavna. The familiar negotiation completed I was delivered to the door with some help from me navigating the back lanes of Qazi Camp where the clinic is situated.

Thorsten, a volunteer from Sweden had arrived just a couple of days earlier and was just settling in. He has been coming here for several years and we have overlapped on most of those occasions. He enjoys getting away from his cold Swedish winters for a couple of months and working in the garden where he is by now almost a part of the team. There is also a photographer, Isabeau, and journalist, Florence, both from France. They are putting their creative talents together to produce a book of pictures and words about Bhopal and the clinics. They plan that it will be available in English as well as French.

Isabeau reminded me that we had met before on her last visit when she took some pictures of me with one of my patients in the observation room.

Most readers will appreciate that it was approaching the 35th anniversary and there would be events happening for the next few days. Being here as a ‘foreigner’ is a mixed blessing; it attracts attention which does give us a chance to explain but it might also attract negative interest from politicians and others who may think we are making illegal donations. Sometimes both are not entirely helpful. I had a journalist ask to interview me and said to him he would be better speaking with the elderly man who had walked all the way on the march near to me.

This year there was a big exhibition in Iqbal Maidan, one of the squares often used for such events. It featured displays by Sambhavna and Chingari plus book sales and Ayurveda remedies from Sambhav.

In the past there has been an effigy burning at the conclusion of the long rally on the morning of the 3rd but this year it was different. There was a dance drama from pupils of a local school which was very emotional and excellently done. You can see this on my youtube channel called “Bhopal Today” in the Miscellaneous playlist as “Children’s Dance”. (With apologies for the photographers who were so intent on getting their picture that they ignored all etiquette regarding other people’s view, and my own wobbles as I was holding the camera high.) This is the direct link https://youtu.be/BOGH8LiSQ_I

I have been working all the time to date at Chingari, the clinic for children with congenital disabilities of any sort. In the Physiotherapy room are three physiotherapists, Sanjay, Huma and Rishi plus another working with the Occupational Therapists in another room. There is a similar number at the other clinic which is located quite close by. I have worked alongside Sanjay and his team before, I think in 2015.

I see myself as a support to them, especially on busy days or when someone is taking a day or two break. Thus my workload is varied and I can never be certain which children I will work with. I most enjoy working with the older boys, I might call them ‘young men’ but there is mental capacity to consider as well, with whom I do hands-on therapy and supported exercises.

This was taken when our room was being decorated and we were working in the front area of the clinic. You can see how big he is next to Rishi’s treatment table and the slight out of alignment of his posture.

Abdullah is in his 20s and a large figure who looks as if he works out in the gym. He has a very caring and helpful nature and his mental age is well below his physical and he also attends the special education class here. He usually comes to us to do self exercise but one day he asked Sanjay if he could come to me for therapy (I am a complementary body-therapist). He cannot speak so his asking is mostly with signs and grunts. Since then we have worked together on most days and I think I can see the improvement as he is standing more upright with his legs straighter* and starting to lift his legs more when walking. All of which will help him long-term.

* Tight hamstrings (particularly) and calf muscles are very common with cerebral palsy and can prevent complete straightening of legs.

 

 

 

 

 

You can see the struggle and focus of this young man even with his stick as he slowly progresses along the path. This other shot sees a big grin at something I had said.

Manan is mid teens and also (in addition to Chingari) attends a ‘normal’ school where he is doing well. He even speaks some English and understands me as well as anyone. Physically his legs are the major problem as he cannot straighten them. He uses a single ‘stick’, one with four little feet which helps him to keep a balance, but unsupported he struggles. When we work together I focus on those legs and then work on his standing and balance. He had been using the treadmill to exercise but not the cycle and I thought the different action might help relax his knees but even with my help he couldn’t mount the cycle machine. None daunted I took him to where we have a stool and free-standing pedals and we managed that, with me holding his feet on the pedals. A day later, I was treating another child when he came in and I suggested he did exercises first while I finished. I turned around one time and saw him working with the pedals unaided!

 

 

 

 

This is his ‘default’ position in which he almost certainly spends most of his time. We can never know what is really happening in his mind.

Khalid, again is around early 20s and the most severely affected of the three. He can sit unsupported but hunched over. He can stand supported, sort of, but has to be pulled up and does a sort of bent-leg stagger as his mum walks backwards. He cannot talk, his legs and arms are strongly in spasm and his spine as stiff as the proverbial board. All my work with him has been therapy, seeking to ease his comfort as best I can by relaxing, even just a little, those tight muscles, including in his neck.

 

 

 

 

It’s unlikely that any of these three had the benefit of treatment as a baby. Chingari was founded only 15 years ago in 2004 and at that time there was a stigma around having a child with disability and often they would have been kept in the home all the time. That is one huge positive influence that Chingari has had with immeasurable social benefits.

One thing I am appreciating with children is that you have to be inventive and flexible. Children have moods, just like all of us, and if he or she doesn’t want to do an exercise ‘today’ it cannot be forced. There are a few hyper-active children and one child was wriggling so much we had to do completely inventive things which would also help his tissue and joints – and quickly, to keep him engaged. I needed to do this also with Khalid to ease his spine. There is no way I can lift him nor instruct him in an exercise so I quickly thought of a way I could give some movement that might help to release some at least of the stiffness.

These then are just three of the many and varied examples of the long-term effects of that disaster back in 1984. None of these children was alive in 1984 and none had any responsibility for what happened yet they have been condemned to a life limited by it, or at least affected by it every day of their lives.

This small boy with cerebral palsy is being carried by his younger brother. There are many siblings who assist in the care of their affected brothers or sisters.

We have also had a lot of fun with the Christmas and New Year parties. If you want to hear Jingle Bells in Hindi go along to the Bhopal Today youtube channel and look in the Diary 2019/20 playlist. Here is the direct link https://youtu.be/FwHPn9LxJho

If you would like to know what is happening in Bhopal, today, then please find my Facebook and Youtube channel, both imaginatively called “Bhopal Today” (with the space). I make occasional posts even when I am not in Bhopal.

Ian Jarvis

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We believe Dow must finally accept responsibility for Bhopal. Until then, The Bhopal Medical Appeal funds two award-winning clinics in the city. Both offer free, first-class care to victims of the gas disaster or the ongoing water contamination. The survivors have nowhere else left to turn – please help if you can.