Tuesday, September 27, 2011

Disability Field Trip


I've talked from time to time about some of the work that Srijan Foundation does. I think it's important to remember that as much as I'm enjoying my time in India, there is obviously a very serious side to the work that VSO does – it's not a 12 month holiday! With that in mind, this is one of those serious posts.

Srijan is embarking on new ground with one of their projects at the moment. Whilst working in the mining areas of Kuju, the project managers there were struck by the number of people living with disability. Most of these people are shunned by the community and given little or no support, even from their families. Srijan wanted to help, but have no real experience of working with disability.

I was discussing this with Srijan's management team and pointed out that a large number of VSO placements are involved in disability work and that some of those organisations might be open to having Srijan visit for a day or two to see their work in action. Rajiv and Swapan thought it was a great idea and the Great Disability Field Trip (GDFT for later reference) was born.

I emailed the VSO vols and was overwhelmed with the response. We got offers from Siliguri, Koraput, Bhubaneswar, Kolkata and Delhi! That's basically everywhere VSO has a placement! Anyway, I put the options to Srijan and they decided we would go to Kolkata and Siliguri. Then just Kolkata. Then Kolkata and Koraput. Oh and it was 10 people. No, 15. No, 5. Hang on, maybe we'll just go to Siliguri. Repeat. A lot.....

After about 2 months (this isn't an exaggeration) we made a final decision. After the third final decision I booked tickets. A lot of tickets. You see, as well as the GDFT, we were also offering the rest of the organisation the chance to join us afterwards on a 2-day holiday in Darjeeling. 13 people took up the offer. 6 people were on the GDFT. 5 of the GDFT were going to Darjeeling via Kolkata. I was going via Pakur and Kolkata. The holiday team were going direct. Then I had people going home to lots of different locations. In short, I never, ever, ever, want to try and book a group holiday again!

But Tim, you said this was a serious post? Well, I'm getting to that....

In Kolkata, we visited Sanchar. Sanchar are basically the leading organisation in India when it comes to Case Based Rehabiliation (CBR). CBR is the fairly simple idea that every case needs to be judged on an individual basis – that disability can't be swept under the mat by means of media campaigns etc. Sanchar are in it for the long-haul, working with individuals, their families and their communities for years and years.

On our first day with Sanchar, Rajiv and I accompanied one of their case workers on a couple of field visits. We journeyed into the outskirts of Kolkata, to a gorgeous little village. It was almost too picturesque with little ponds everywhere – so much greenery – I'm not used to that in Hazaribag!

We visited a young girl (I think she was 10) who had severe learning difficulties. I'm not sure what the term in the UK would be, in India they simply call it “Mental Retardation”, which feels very insensitive to my English ears, but appears to be the accepted term here. While we watched, her case worker took her through a number of exercises, such as counting on an abacus-like device, colouring, etc. Her younger brothers helped out.

I have friends who work in these fields – Occupation Therapists and such-like. I have a completely new level of respect for them after watching this young lady working with the girl. The patience, the dedication, the enthusiasm – so heart-warming and motivating. I'd love to show you photos, but the poor girl was distracted enough at having a white man in the house and I was really worried me grabbing my camera would a) upset her or b) further distract her.

After an hour, we moved on to a different part of the village and possibly the most distressing thing I've witnessed since being in India. I'm not going to lie here people – this had me close to tears...

We walked up a path to a temple where there was a man, probably about 40, shouting at an old woman. He was very aggressive, possibly drunk. About 10 metres past the temple was a young boy – Totum.

Totum has cerebral palsy. He is 8 years old I think. As we walked up, he was lying, face down, completely naked in the mud. His poor, spindly legs lay beneath him, caked in dirt. His father was the man shouting just metres away, apparently unconcerned with his child's condition.

His case worker disappeared off into the hut behind him and re-appeared with a walking aid. Totum, smiling all the time, struggled to raise himself up to a standing position and slowly edged himself forward. The wheels and feet of the walking aid continually caught in the mud and uneven ground. He slowly made his way the 15 metres or so to the water's edge, where he lowered himself onto a tyre that was placed in the pond and proceeded to wash himself clean.

I can think of few children who could have seemed happier while doing this. Emboldened by his attitude, I asked if he minded me taking some photos – he was more than happy for me to, as long as I didn't show him naked!

After washing, he climbed onto a nearby cart and dressed himself, then we made our way into his house and he was positioned in the special chair made to support him and went through a number of exercises designed for him. Like many children with his condition, Totum has an active and excellent mind, he simply has problems with his motor skills. Unfortunately, without the specialist care that would be made available for him in the Western world, he is neglected in the schools here, even though he is an extremely clever young boy.

I could have spent far more than the two hours with Totum. While it was sad to see a young boy with so much vitality in such a depressing state, you could tell that he was not someone who would complain about his deal in life. He was happy for the small things that were available to him.

So next time you get a bit down with life. Next time you think you've been dealt a bad hand. Stop. Think for a second about Totum. Realise that you're probably actually not in that bad a situation. Smile to yourself, embrace whatever challenge has been put in front of you and get on with living your life. If Totum can, we all can....

Side note – I have no idea who is reading this blog and whether it can reach anyone who can help, but there must be a better piece of equipment for Totum than the walking aid he is trying to use. It is simply not designed for the uneven, muddy ground of his village – it's designed for the pavements and smooth surfaces of a western society. If anyone has any thoughts/ideas/suggestions on how to solve this problem, let me know via the comments and I'll put you in contact with Sanchar...

3 comments:

  1. I also met a boy about Totum's age with CP, all smiles as well! He had a chair that was just like Totum's (which could have been because SANCHAR is the training org for our disability program!). Part of the individual fundraising program I tried to start with SPREAD was to provide aids for the disabled, since they aren't usually covered by the funder. Momentum fizzled (not on my end!), but I tried...

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  2. I think a four wheeled mobility scooter or an electric wheelchair would be better as they are often made for uneven ground. I would love to help Totum, he sounds like such as lovely young boy but i cannot afford to help him :(. I hope my suggestion will help someone to get him one :)

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