Category: Community Based Rehabilitation (CBR)

A little action for that big smile…

It was a hot day today and I was reluctant to go for a field visit. But work has to go on and a meeting was to be facilitated in one of our villages. We reached and waited only to find out that people who had agreed to come yesterday were now caught up in some other work and the meeting was cancelled. I was annoyed and decided to go back when Mr. Sanjay (our staff) suggested that we meet some children and follow up on their status.

Since we had put substantial effort into the children in this village, I was hoping to receive some good feedback. We visited Dasrath, who is 3 years old and has Cerebral Palsy. I was hoping to see him in a better position but we met him in the same state as a lot of children with disabilities, neglected, alone and on his bed.

Children with CP are usually required to have different positions which benefit their posture and various other things but since there is no one at home to take care of him when his parents go to work, he spends the entire day lying down, unable to interact with anybody. His parents are generally supportive people but since progress is very slow, they tend to give up and the other obligations are prioritised. This added to our frustrations but we stopped to talk to his siblings and his uncle and explained the benefits of making him sit and teaching him to interact.

As we planned to leave with our frustrations, Mr. Sanjay decided that it was not enough if we just visited over and over again and explained the child’s condition and he wanted to go further.

Please follow the photographs to see what happened.

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This is how he stays, alone
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He seemed excited about sitting but needed some modification for balance.
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Mr. Sanjay initiated the modification
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The kids joined in….
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The uncle took over and the structure was complete.
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He was seeing people from a different angle and hence more interactive.
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Modification for support made.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The problem was that he had to made to sit, the usual solutions are fancy items like CP chair or corner chair which are non-available locally  and even if available, unaffordable. A small idea by our staff and half an hour of our time changed the way Dasrath looks at things now.  The family has promised to make other modifications as well.

When we work with communities and work towards empowerment, we focus so much on “Helping them to help themselves”. We talk and explain and then expect them to act and get frustrated when change does not happen the way we expect. We sometimes miss the umpteen opportunities to initiate change a different way Sometimes, action has to be initiated from our side as well, a nudge; a little hand-holding can go a long way. It does not have to be resource intensive, simple gestures and initiatives can make a world of difference.Untitled8

As I left their house, I left my frustrations behind and carried with me the image of his smile.

 

 

 

 

 

 

 

 

Happy Reading, God Bless

(Consent was taken from his parents)

The Invisibles – Now you see them, now you don’t

In any project, selecting the target area is crucial as it determines the kind of people we would be able to reach out. With this in mind, we in the CBR project set out for an exploratory visit to the project area. The task sounded easy but as our team set out, there were various challenges varying from broken roads to overflowing rivers and finding most people in the fields busy with agriculture. But nothing could compare to this particular challenge, “not finding People with Disabilities”. Most villagers we had asked claimed there were no people with disabilities in our village, some claimed “oh that lame man, I think he died a couple of years ago or that mental child, I don’t think she survived”. Most people we met seemed very sure there were no people with disabilities in their village and some even proudly stated so.

It should actually be good news, unfortunately it isn’t. According to the WHO statistics, 15 % of every population world-wide has a disability (World Report on Disability). According to our secondary government records, at least 1-2 % of every population are people with Disabilities.  But in our experiences, they are often not found, people do not know them, they are forgotten or invisible. Often, families hide the fact that they have a child or an adult with disability in their families they feel ashamed and this often leads to them being neglected, uncared for. And without any care, they deteriorate further, are constantly dependant, a burden to the family and finally lose all dignity.

But during one of our visits, a call came through to one of our staff from the District Disability Rehabilitation Centre. He urgently wanted names and contacts of a few PWDs. I wondered why there was such a hurry to find random PWDs. I found out that, since the Independence Day was coming up in 2 days, they wanted to distribute some aids and appliances from the Department of Social Welfare. So suddenly, PWDs were in demand, it may be a good thing and someone in need could actually benefit. But what annoyed me was that the PWDs were sought after for a day or two in a year.

We met the officer in charge and he expressed that this would be an opportunity to showcase the activities of the department. It felt like the PWDs in need were on display for the world to see what the Department could achieve. There would be photographs and news reports and heaps of praise but the PWDs would go back to being invisible. However we referred a young girl with severe physical impairment who would benefit from a tricycle. I found out today that she couldn’t go and receive the tricycle. I wonder if she will be on record somewhere, if she will ever be sought out again, if she will ever get another chance, if she and many other PWDs be visible throughout the year.

Some may argue that at least they are getting something, I disagree, and they don’t need our pity or charity to be given something. They deserve better, a better life, a better future and better attention. The least we can do is to acknowledge their presence amidst us and make them more visible.

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Thank you

No more “Teach a man to fish, he will eat for life”…

For ages, development, social work, social change and many other professions focusing on empowerment have had the old Chinese Proverb as a guiding Star “ Give a man a fish, he will eat for a day, Teach a man to fish, he will eat for life”.

We have followed this in our work and have communicated it strongly as a principle. But just today I came across a very interesting modification to this principle. This has been outlined in the “Barefoot Guide to Working with Organizations and Social Change”.

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Source: Barefoot Guide to Working with Organizations and Social Change pg no: 6

Often a lot of development activities done under this banner, end up teaching the community to fish claiming that it is sustainable. In working with People with disabilities in our project, it means that providing services makes them dependent for life but teaching them skills makes them independent or empowered for life. But in this complex society that is undergoing constant change, the skills that they learn are dependent on the circumstances. As long as the river or the circumstances are favorable, they would be able to use their skills but when things change, they either have to learn new skills or end up where they started.

But as this new twist to the Chinese Proverb suggests, organizing of Community would help them come up their own solutions. This is often overlooked in development activities. We say we believe that Community has strengths but often don’t act on it. This often leads to project driven interventions which have quicker results but often last only till the situation remains the same.

We in the Community Based Rehabilitation Project are moving to the next phase and are planning to expand our work and follow the Community Organizing (CO) process with People with Disabilities. In our previous experience, the CO process has been difficult and time taking as it does not yield immediate results. But coming across this new twist to our guiding principle has been encouraging.

I am looking forward to this new phase in our project and although the future looks hazy and the task is huge. I hope as a team, we would develop an attitude that, people, even the most helpless ones have inherent strengths that can be developed. I pray that as we move ahead, we will be able to facilitate our communities to come together for social change, no matter how difficult the work gets. This we believe would result in transformation and restore hope.

Happy Reading

God Bless…

Water- the Elixir of Life or May be Not…

This was my first visit to Chukru, a small village in the Palamu district. Although I had heard quite a bit about the village, it did not prepare me for what I saw and heard. Here is an account of my experience of my field visit, a very familiar but tragic tale.

Chukru is notoriously well known as the village, with record number of people affected with Skeletal Fluorosis, a condition caused by extensive exposure to Fluorine content in the water. A limited exposure would lead to the dental condition, Fluorosis but a chronic exposure could scar you for life. But Chukru is not only famous for this issue but also the extensive amount of work done on paper and feeble attempts in reality both by government and non- government agencies.

It is said that almost every NGO who initiated work in the Palamu district (one of the most backward districts in the state) had visited the village, made promises only to never come back. The people of the village, frustrated have lost hope and are afraid to trust any more.

I had visited the village because our staff shared that they were finding it difficult to reach out to people (we work with people with disabilities and their rights) as they didn’t want to even access their rights which were available.

Here are lives of two families I met, which is a representation of almost every family in the village.

Upendar is 9 years old, a happy go lucky kid just catching few minutes of play before school started. As I stopped to chat with him, I found that both he and his brother Ajay have been victims to this dreadful condition. Although other discussions held in the village showed that most people who were affected, manifested symptoms only after their twenties.

As we talked, his mother walked in nonchalantly (not a usual sight in the village, especially when there are strangers in your house). She didn’t seem expectant at all, giving me the feeling that she was used to people interviewing their family. Still determined, I sat to talk to her as well. She shared of her three children, both the boys were the ones affected.

The family had also spent a lot of money in treatment and finally gave up as they did not get any medical help.I told her that I had met her son and that he was a bright kid. She beamed as she proudly declared that she was determined to give both her sons good education, as it was the only source of hope.

The other family I met were a couple both very old and had lived with this condition for almost 30 years. In addition to this, they also do not have any children and are dependent on each other. Both of them shared they had adjusted to this life and have no expectations of any change.

A crowd had gathered around us and people were enquiring was this the meeting that was supposed to happen. I was surprised as we did not plan any meeting, when we found out that another “NGO” had come to hold a meeting to discuss the issue. People shared that this was a non-stop happening as the village has been a constant attraction. They asked me what would I do, I didn’t have an answer.

We explained that we are not here to solve their water crisis rather to work with people who are already affected. We enquired if the people had taken any steps, they shared that they had protests, marches but each time same promises were made to shut them up. I have no clue what we will be able to do in this village as everyday people are still drinking the same infected water and just waiting for the worst to happen, a destiny they feel that cannot be changed.

We, in the project don’t want to be just another NGO with promises, the magnitude of the problem scares me but am reassured by this very familiar verse “My Grace is sufficient for you, My strength is made perfect in your weakness”. I am not sure of the way forward but one thing I know is that for any sustainable change to happen, it is absolutely necessary for people to be part of that process. I believe that there is light at the end of this tunnel in Chukru; it’s just a matter of time till we reach there.

If you are reading this, I would appreciate any thoughts, feedbacks and experiences you might have on similar issues.

Thank you

God Bless.Photo5972

International Day for Persons with Disabilities – 2014

December 3rd is observed world wide as the International Day for Persons With Disabilities and the UN theme for the year is “Sustainable Development, The Promise of Technology”.

This day provides a platform to bring to light People with Disabilities, their abilities, their issues, their opinions. It also provides an opportunity for all stakeholders to assess themselves to see how far PWDs have been included in development both as beneficiaries and as agents.

This year’s theme is interesting as it focuses on Development that should be sustainable and a giant contributor to development- ICTs(Information Communication technology). The focus is also on present and upcoming technology, to see if they are inclusive and also how far technology can be used to improve inclusion and facilitate better participation of PWDs. We believe that higher level of participation from all sections of society would result in Sustainable Development.

As part of our work, we celebrated IDPWD a day earlier. This was done so that PWDs from our areas could be involved in the programs done by the government on 3rd December. It was an interesting day, we had approximately 250 participants, all People with disabilities from about 35 villages spread across 2 districts. The program was organized with an aim to create awareness regarding disability to the general public and to help PWDs experience and explore new things.

We also had the privilege of the participation of our District Social Welfare Officer, who also has the reputation of being a young, enthusiastic officer with special regard to disability affairs, the District Disability Rehabilitation Officer and the Block Development Officer.

Along with this year’s theme, we also focused on practical needs for PWDs, we had sessions and stalls showcasing different livelihood options, things to keep in mind when planning for livelihood. Another stall depicted Community Based Aids and Appliances (these can be made at home using local resources) and also information on rights and schemes.

Below are pictures from yesterday’s program, Happy Reading.

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Registration of Participants
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Starting the programme with prayer
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Lamp lighting by Chief Guest
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Welcoming the gathering by Mr. Prabodh Kujur
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Honoring guests
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A view of participants
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A special song by a Participant
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Stalls on livelihood and adis and appliences
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Speech by Chief guest (District Social Welfare Officer)
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Display of Aids and Appliances which can be made locally
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Session on Livelihood by Mr. Abinash Biswal
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Session on Aid & Appliances by Mr. Ebez George
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Session on Home based therapy by Ms. Sheron

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God Bless…..

A Face in the Web

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A lot has been written and debated on the vicious cycle of poverty and disability and has always been of interest to me as well. Often we get lost in the academics of these concepts that reality doesn’t affect us as much. But during my field visit yesterday, I happened to meet someone caught in that web, a face in that vicious cycle.

Anshu is a 2 year old girl with delay in developmental milestones. I had met her during one of our assessment camps for Children with disabilities. She was accompanied by her mother. In the initial interaction, her mother seemed surprisingly knowledgeable. I later found that she was a trained health assistant and had been working for about 6 years. I even took the liberty to assume that the child was getting good care at home and that everything would turn out ok. But unfortunately, not everything is as we see it. A long interaction and a visit to their home showed the other side of their lives.

Anshu is the only child in her family, her father lives in Kerala in South India, where he with many other men from the village had migrated in search of jobs mostly unskilled labour. Her mother is hopeful that her daughter would recover. She had quit her job as a heath assistant to take care of her daughter and is dependent on her husband.

But this is not all, Anshu has a heart condition, when asked if they had taken any treatment, her mother explained that they had gone to Ranchi (about 150 kms away) but couldn’t admit the child as they did not have money and had to come back. She said when they had saved enough money there was no one to accompany them. Her father visits once a year and that could be a time for them to go for treatment but this year due to lack of rains, there has been no agriculture and it also means that her father would not come home this year.

As we observed the child playing cheerfully, it was heart breaking to watch her stop and gasp for air. I offered her a biscuit, her face lit up but she was too tired to come and take it from my hand. As we talked, am disturbed by the thought of how much longer would the child be able to hold on? I pried her mom on if they were planning to have other children, her reply was surprising, she said they wanted to wait till the child is independent otherwise they wouldn’t be able to take care of her properly. I am not sure what is the right reaction or suggestion. I left quietly with a promise to come back. I only can whisper a prayer that the family would win the race against time cause every time I remember that family, I am left with an image of little Anshu waving but her little heart beating so rapidly that it was visible from where I stand.

Hope
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Thank You