Tag: Disabilities

People with Disabilities in India: Hopelessness and Hope

Today International day for People with Disabilities is being observed around the world.

Here in India, we also have various events to commemorate the day like every other year but PWDs continue to live in extreme poverty, facing different types of discrimination, poor quality of life and hopelessness.

PWDs in villages are still being mocked and are identified by their impairments. Disability is largely considered a consequence of one’s past life sins or karma instead of being a physical condition and disease. Widespread awareness is still lacking among people who are both educated and denied education.

PWDs are often looked down upon or looked at in a manner that makes them feel worthless. Even when we show compassion and kindness, it is more out of pity rather than the actual intention of helping the person grow. Our behavior is attached with stigma and discrimination and our use of words affects their self-esteem, confidence and faith in themselves. Some even don’t dare to attend public functions in fear of being rejected, mocked or looked down upon or considered as helpless creatures. Many are confined to their homes all their lives.

Although, disability is often a low priority for the government, in the recent years there have been many initiatives taken. In 2013, while I was working in Jharkhand, it was the first year the District Administration was observing Disability Day. This is almost 20 years after IDPWD was declared globally and more than 15 years after the PWD Act 1995 was passed. It is tragic that such a global event had been ignored for so long while there also seems to be a glimmer of hope as the District Disability Rehabilitation Centre was started on that day as well.  There are various rights for PWDs outlined in the Act and there are various social welfare schemes initiated by the government but they hardly promote empowerment, wellbeing, and freedom. At the ground level, the initiatives by the government are limited to disability pension of Rs 600/- p/m. In addition to the fact that the amount barely provides for basic needs, it is very irregular. Pensions are received once in 6 months or sometimes once a year. Even when they receive the amount, it is used to meet family expenditures making it close to impossible to have a decent quality of life dependent on the pension.

A few other initiatives by the government include the provision of assistive devices like wheelchairs and tricycles for PWDs (but not all) with restricted movements. These events are rare and when these equipments are given, they are of very poor quality and often do not last long. When a few PWDs actually utilize them, their movements are still restricted as the rural infrastructure such as roads, houses, toilets are inaccessible.

Apart from this, in order to avail any government benefits, PWDs are required to have disability certificates. Unfortunately, by 2012 when my colleagues in EHA had started working in the area in Jharkhand, very few had disability certificates in the region. Around 80 – 90 percent of PWDs were not registered or given certificates. The certification is a lengthy process which requires multiple visits to the district headquarters. It is both time consuming and a financial burden. Caregivers or family members who are dependent on daily wages find it especially difficult to get the work done. Even this disability certification process is not exempt from corruption. People with lesser impairments sometimes pay and get higher than 40% percentage of disability in order to access government schemes easily. On the other hand, there have been instances where people could not pay and have got lower percentages of Disability during certification.

As stated above, there are many challenges and barriers to a better quality of life such as social, financial, institutional and infrastructural.

There are hardly any government initiatives that focus on capacity building, skill development, education and empowerment of PWDs. Skill development programs which are functioning are more of a hype rather than doing any sustainable good.

It is 26 years since the first human development report was published by UN based on the capability approach. The government should focus more on building capacities, providing opportunities and an environment to utilize their skills, disable friendly technologies and accessible markets. Moreover, to create a community and society which is open, educated enough and inclusive in order to provide an enriching environment which is necessary for better quality of life.

However, it is not all hopeless. In the recent years, many Non-Governmental photo1729Organizations have come up to work in this area of disability, focusing on the right based and empowerment approach. In rural areas a few well informed NGOs are trying to strengthen the rural institutions and helping in forming disability people groups in order to work for their rights. The Government is also increasingly coming up with policies but the implementation is still dependent upon the mercies of the officials.

Hope is raising, change is happening but the question is can we be satisfied with this? Satisfied by the disguised notion that things are changing? If we are satisfied with the way things are changing, we are doing injustice by denying their rights. We need to be impatient, because the way things are changing, by the time we ensure an equal society and wellbeing for all, millions of lives would have been lost without education, quality of life, wellbeing, freedom and even without having to dream.

As the popular quote from Nehru’s speech on the eve of India’s Independence goes, “At the stroke of the midnight hour, when the world sleeps, India will awake to life and freedom”. I wonder we are still waiting for that stroke which will bring with it life and freedom to other relevant aspects of our lives.

Let’s observe the International Day for People with Disabilities as a reminder that a lot is still to be done much more than what we have achieved so far.

Love

Abinash

P.S. Contributed by Rachel

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)

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…..