Wednesday, March 17, 2010

A Chair for Sonali

I thought I’d share a set of photos showing you a few days at work.

Sonali is 5 years old and has had Cerebral Palsy since she was born prematurely. This has affected her development and Sonali isn’t able to sit, crawl, walk or feed herself, but is very talkative (even saying a few words in English now!) and loves playing games! She lives in a small village about 10km outside of Puri with her large extended family. After meeting Sonali and her family a few times, myself and her field worker thought it would help Sonali if she had somewhere to practice sitting in her home. At the moment she spends a lot of her time lying down on a mat on the floor and so doesn’t get to practice sitting up. After discussing the plan with our colleagues we recruited Pravakar, one of the other field workers to help us build her a chair specially shaped to give her the support she needs.

As Sonali’s family are very poor we had limited resources to make the chair from, so we loaded our bicycles up with some wood and tools and headed to her home. Her parents had managed to salvage from bricks from another part of their house and had made some cement from mud from the stream near the village. We cleared a spot in her house that we thought would be a good space for her to have a chair, it’s close by where the cooking is done so if Sonali’s sitting in the chair her mother can keep an eye on her and make sure she’s ok.

Our materials....
This is Pravakar laying the first set of bricks for the base of the chair.

I managed to stay quite mud-free as I didn't think my brick laying skills were quite ready for this so I held onto the tape measure to make sure it would be a good fit for Sonali.

This is the chair at the end of day one. The metal rods are making space for holes to put the table top onto. Sonali's mum fed us with banana and coconut paranthas (yum yum) before we headed off into the sunset to leave the chair to dry over the weekend.

On Monday we went back to the house and checked the table top we had prepared earlier would be a good fit.We then padded the edge with some foam and tape to make sure it would comfortable but supportive for Sonali's chest.This is Jagannath checking the shape of the foam for the backrest and seat.The first test run! We had to distract her with toys to make sure the chair would be a good fit and give her enough support to sit on her own. We covered all the foam sections with some plastic coated canvas from an old sign so that it would be more durable and would stay dry as the chair is in an outdoor courtyard.

This is the finished result!

We're visiting again next week to try and find a way of keeping her ankles and feet in a good position but for now Sonali seems happy and comfortable in her new chair. They've come into our physio centre a few times this week and her Mum says she's enjoying having her very own chair to sit in for meals and play.

Wednesday, March 3, 2010

Work, Rest, Play and Twinkle the Wonderbike!

I thought the time had come now I’m feeling settled in my new home to update you all about life in Orissa at the 3 month point…
Firstly…the reason I’m here!

I’m working for a small organisation called SNDAYP (don’t ask me what it stands for, I can’t pronounce it!). SNDAYP has two main focuses’ for their work around Puri; the empowerment of women through vocational training and Community Based Rehabilitation for People With Disabilities (PWD). They have a website if you want to see a little more about the organisation. All in all there’s roughly 15 staff that work for there plus little old me. They have one field office/training centre/cyclone shelter based in a tiny village called Golashi about 15km out of Puri and a physiotherapy centre in the town called ‘Healing Touch’ that deals with the aches and pains of Puri! My role within the organisation is to provide training in physiotherapy to the field workers that go out to the surrounding villages. Most of the staff are young and only one or two have any sort of training in disability or CBR. As the organisation is growing most of them have only been there a few months so understandably are a little lost in what physiotherapy to offer children with severe multiple disabilities that live in very poor rural areas.

I spent the first month or so trying to follow the good old VSO advice of making friends and forming good relationships with my colleagues , whilst observing how the organisation was running and how I might possibly go about making a positive, sustainable change here (every night studying my Cerebral Palsy textbooks!). The making friends plan was hampered by the fact most of my colleagues only speak a little English and my Oriya is in it’s very baby stages! But ‘deray deray’ (slowly, slowly) we are getting there. They really enjoy teaching me words and phrases in Oriya and are thrilled when I slip them into conversations and their confidence in speaking and understanding English is growing . I’ve also learnt to adapt how I speak to help them understand me. I now sound like a slowed-down Indian Yoda but conversation is flowing and if all else fails I just plonk a big smile on my face! They love looking at photographs of my home and family, asking me questions about life in ‘London’ (I’ve given up explaining that I’ve never lived in London…) and teaching me about Indian culture and offering me fashion advice!

I’ve also learnt to expect the unexpected here. In my first week I was asked to go to a training session on child rights in India. Off I pootled hoping ‘d learn something useful and was a little alarmed when ushered to the stage at the front of the room as an ‘honoured guest’ to sit in front of the 200 or so participants. My state of panic reached a new level when, through the Oriya I gleaned that I was going to be presenting a session during the day. In one of the breaks I took my chance to ask the course leader what was happening and he informed me that he’d like me to share my teachings on child rights with everyone then handed me the microphone. I think I’ve repressed the memory of what I actually spoke about during that session, but I’m pretty sure the person translating said a lot more than I ever said in English, so I’m hoping he ad-libbed a bit to make me seem a bit less clueless!! Ah well, all in a day’s fun in India!!
As for the physiotherapy side of things I spend a portion of most days in the centre seeing some of the people that come in for treatment with Shila, the physio based there. All sorts of people come through the door, some with CP, some with arthritis, some following accidents or trauma and some stroke rehab patients. I’m trying to not get too involved as I’m really here for the CBR side of things but it’s good to have a second pair of eyes for some of the complex patients and Shila and I have been doing some peer-learning in quiet moments or during our lunch break back at her house whilst trying to entertain her very hyper-active son! The rest of the time I have been going out on field visits with the CBR workers. Initially I went out with them just to observe what they were currently doing with the children. I was shocked by the conditions many of the children live in. Some the houses don’t have electricity, some are just made from mud and palm fonds, some are just simple brick structures. Most of the families live on around 1,500 rupees a month (about £20) split that between 10 or so family members and it doesn’t go far. The children that aren’t mobile spend the majority of the time just lying on floor mats and only a handful of them get any sort of education.

Now that I’ve got a feel for the challenges faced by the rehab workers, what they currently doing and some feedback on what they’d like to learn we’re slowly going through all the cases and re-assessing them, trying to set functional and realistic goals for the children. I’m also going to hopefully be running a few training workshops soon for the rehab workers and for some of the families to teach them about CP and get them more involved in their child’s rehab…so watch this space.
All in all, work is great. It’s heart-breaking to meet some of these children and you feel that there are just so many things standing in the way of making any sort of change…money, education, culture, attitudes, stigma, equipment, accessibility, knowledge…but I love trying!!

My first 5 weeks in Puri were spent in limbo-land minus a house. At first I stayed in Hotel Lotus (I second the good write up in the Lonely Planet!) but after a few days the prices were being hiked up for Christmas so we were hunting for an alternative. No suitable homes were coming up, in the early days I was being shown places with no bathrooms, windows or kitchen! I could recite the VSO accommodation policy word for word as I used it to back up why I wouldn’t be living in the room being shown to me! After 5 days I moved into the guest house at the local Catholic Church while we continued the hunt for my elusive Club Tropicana. The Priests were very nice and welcoming and provided interesting conversation over evening chai, and my room was clean and spacious , but it still wasn’t home. I had nowhere to cook and every night would have to brave my way past their killer guard dog that easily came up to my chest to get into the building. As for the house hunt the flats and houses being offered were gradually improving and I said yes to at least 10 of them but unfortunately the thought of single foreign female didn’t interest the landlords. One actually spent a good 40 minutes telling me how I would ruin the traditional culture of the apartment building (I was really gutted about that one, it was right on the beach!). In the end my boss resorted to showing me around only part built places. It amused me being shown just concrete boxes with no roof, plumbing, and electricity and being assured that it would be ready in 2-3 days for me to move in….hmm methinks not! Finally, when returning to the centre one night after another dismal house hunting session we noticed that a construction site in the next lane along had turned into a rather nice looking house and promptly rang the number and arranged to go and look round the next day. When I was lead to the top floor apartment I was thrilled to see it was finished, had windows, and was actually really rather nice! To top it all the owner of the flat lives in America so understood my plight as a foreign fish out of water and had no problems handing the lease and keys over to me. 4 days later I packed all my world possessions into the back of an auto rickshaw and moved into Club Tropicana!

I’ve been in Clo-Tro about a month now so it’s feeling like home, I’ve picked a few touristy kitsch items from Puri’s many souvenir shops to liven the place up and apart from flashing a plumber that strayed into my flat one lunchtime it’s been good to finally feel I have a home.


In my down times when I’m not at work I’ve been able to explore Puri a fair bit. It’s an interesting small town which suffers from a split personality. One part of the town near the beach is back-packer land, full of souvenir shops, little outdoor restaurants and hotels. Puri attracts an eclectic bunch of travellers that gave me some interesting conversations in my first month! I had dinner with Israeli magicians, American life-drawing artists, French Hare Krishnas and Belgium Buddhist monks…The tourist season is dying down a bit now as the temperature is rising (now hitting 37 degrees in the height of the day).

Another part of the town’s personality is a Bengali holiday destination, there’s hundreds of hotels here and if I take a walk on the beach I seem to be hustled into many Indian family holiday snaps! It’s quite good fun watching them take a “sea-bath” all fully clothed in Salwaar Kameez splashing in the sea. The inland section of town revolves around Jagannath Mandir, one of the 4 holiest sights in Hinduism and attracts many thousands of pilgrims every year giving the town a very devout and traditional feel.

There’s also a fisherman community made up of Telegu speaking people of Andrah Pradesh. They live along the beach and it’s a pretty intense experience taking a walk through the community. I believe there’s about 10,000 people living there and the beach is basically used as public bathroom, home and workplace. I’ve been going to a church in the village which has been amazing and has been good to get to know some of the people that live there and all the changes that have happened in the community over the 40 or so years since they migrated to Puri in search of better fishing.

As I’m the only volunteer in the town I like to escape every now and again to remember what cities are like! Bhubaneswar, the state capitol is only a 2 hour hot, sweaty and cramped bus ride away so I’m frequently popping there for shopping, air conditioned coffee shops and some nightlife. I spent Christmas up there in luxurious surroundings of the Mayfair Lagoon hotel with some of the other volunteers, so yes, it was difficult being away from home for the big day for the first time, but I consoled myself with massages, sunbathing by the pool and a food fest!

I’ve also managed to squeeze in a long weekend in Kolkata. It was great to explore the city and I really loved the old colonial architecture. We spent one afternoon wandering around Park Street graveyard which was an amazing oasis filled with huge monuments to Calcutta’s brits from back in the day. I even managed to find one man from Weymouth which was a strange touch of home in India!

Finally…The Adventures of Twinkle the Wonderbike…

On my first day in Puri I was taken by Surender, one of my colleagues to buy a bike to allow me to get out to the villages to see the children. I was taken to the shop and given my choice of the bikes on offer. As soon as I saw Twinkle, with her purple glittery frame and little basket, I was smitten. It was love at first sight. Since then we’ve been inseparable. Twinkle boasts many special features;

A ‘lady guard’ on the back wheels to prevent my dopatta becoming entangled in the chain (doesn’t work, I’m frequently strangling myself and all my dopatta have rather ragged ends!)

No gears at all, but mercifully Puri is pretty flat!

Breaks that kind of stop you…ish…if you also put your feet to the ground and swerve to avoid the cow/cycle/pedestrian/dog/car/bus etc that may be blocking your path

A saddle so firm I winced when I sat down for the first month

A constant supply of work for ‘Chuck‘ my cycle repair man (named by me because of the sole t-shirt he wears) Twinkle consistently falls apart at least twice a week so at least I’m providing him with a steady income. I met Chuck for the first time after Twinkle’s pedal snapped off as I was going over a speed bump. I soared like superman through the air and landed in a bloody heap outside Chuck’s shack, he’d patched Twinkle up for me for the grand price of 10 rupees and I’ve been going to him ever since!

On days when I’m going out on field visits Twinkle and I notch up about 30km a day. It’s pretty hard going in the heat of the day and I tend to arrive at my destination rather red and ‘glowing’. Surender cycles like the hounds of hell are after him so when I go out on visits with him I have him constantly shouting back to me, “Lucy Madam, speedy up!” but he did say I cycled like a man…which I think is a compliment….. Thankfully it’s much more sedate when I go out with the girls so it’s nice to have a change every few days.

So that, in a nutshell is my first few months. Every day seems like a bit of a rollercoaster but I’m feeling more settled now and looking forward to all that’s coming up…watch this space!