Snehanchal has social workers posted to stay near the registration desk in a major government hospital. (This privilege of occupying some space in a corridor was obtained after some long struggles; but eventually the powers permitted it.). The social worker’s role was to find people who needed palliative care and to direct them to the hospice.
One day, a social worker found a man and his wife lying helpless in a miserable state outside the hospital. A chowkidar was asking them to move away; but the man obviously was unable to. He had a nasty cancer on his cheek on which maggots were crawling about and feeding themselves. The hospital had told him the usual, ‘There is nothing more we can do. Go home and come back after a week for review.’
If only they had told him not to come back, they would have somehow gone to their village. But here he was having to come back to hospital. Strange, isn’t it? He is rejected without his wound with maggots being treated; yet the doctor’s word seems to be law to them.
The social worker wanted to take him to the hospice. Initially the family was reluctant to go. There was clear lack of trust in humanity! But after some persuasion, and after clear promises that no payment will be required, they accepted the invitation, possibly because they had little choice. The man and his wife were taken to the hospice.
The loving care cleared the wounds of maggots. The man lived there for nearly a month and died.
But the story does not end there.
A month later, a group of villagers led by the man’s wife came to the hospice. They carried several heavy sacks with them. They would not say what they wanted; they wanted to see the founder-director, Mr Jimmy Rana. The staff explained that he had gone back home for the day. But the family was insistent, “Just call him and let us talk to him.”
They obliged. Mr Rana came on line. When he learnt that it was the dead man’s family, he agreed to drive back to the hospice.
The sacks that the villagers brought had several jars of eatables and a jar of money too. That was the ritual; all the villagers would chip in with money and food stuff with which the family would host a feast. The villagers would enjoy the feast and then the man’s soul would be set free.
But in this case, the villagers had got together and decided that the usual ritual just wouldn’t do. They decided that they would not have the feast. Everything collected including all the money was to be donated to the hospice. They could think of no better way of setting the man’s soul free.
When we talk about the community participation in Kerala, too often we get an immediate response, “All that may happen in Kerala. It wouldn’t happen in our place.”
We are sharing the above story for the attention of everyone who believes in that line. There are people like these villagers, in every place. Maybe the busy habits of city-dwelling may have changed some, but deep inside there would be a lot of people in any community who would be willing to help those around them. They just need a facilitator who shows them the way to putting their humanity to practical use.
With the help of the women’s wing of the organisation that she headed at that time, Federation of Malayali Associations of America (FOMAA), she and her colleagues Rekha Nair (WF Secretary at that time), Kusumam Titus (Advisory Board Chair) and Benny Vachachira (FOMAA President at that time), funded us to create a special support system for one group of vulnerable people – women. As patients or caregivers, the challenges women have to go through in our society are formidable.
Please read what FOMAA has to say about Dr Sarah Easaw: https://www.facebook.com/story.php?story_fbid=400269860801798&id=233290290833090
And please watch this six minute video. It will give some examples of the value of the work that FOMAA made happen.
Thank you Dr Cherian Varghese (Coordinator, Management of NCDs, WHO, Geneva) for making this informative report available.
Swarnalatha is a young activist in Coimbatore in Tamilnadu who needs a wheelchair for mobility. She writes on Facebook: “I’m not the complaining type, but Election Commission of India (ECI) promised 100% accessibility at all polling booths. They promised wheelchairs and volunteers to assist people with disabilities and senior citizens. I found none. ECI disappointed me. These ramps are a joke! I had to seek help from police on duty to lift my wheelchair twice, once to get into the compound and second to get into the building itself and return. Wonder if I could once in my lifetime vote with dignity.” Please read: https://www.facebook.com/swarna.latha.31586/posts/2421934964507809
We had blogged about Swarnalatha earlier; please see https://palliumindia.org/2018/09/women-of-substance/ and https://palliumindia.org/2018/09/women-of-substance-calendar-launch/.
And see what Pallium India’s Ashla Rani wrote in the Times of India in 2017. https://timesofindia.indiatimes.com/blogs/toi-edit-page/when-compassion-isnt-enough/. She writes about the difficulties of entering a restaurant with friends, “…..kind friends and waiters in the restaurant would offer to lift my chair and take me to the restaurant. Imagine yourself in my position. Would you like to feel that you are burdening four or more people? Perhaps one of the waiters has a bad back and you are contributing to his eventual incapacitation? How would you like to be the object of sympathy of a dozen eyes, curiously concentrating on this helpless body being carried up?”
The Rights of Persons with Disabilities Act, 2016, recently passed in Indian Parliament to give effect to a related UN Convention of 2006, promises among other things equality of opportunity and accessibility. This is the follow up action to a UN convention India had ratified as early as in October, 2007!
Laws alone will not change anything. Not if the society does not wake up and realize that the differently abled are part of this world and have a right to this world. As Ashla says, “My request is to you – each one of you.…. give a minute to put yourself in the place of someone who has a disability or paralysis. Allow us to be human beings. Break the barriers that prevent us from reaching your world”.
Dr Daftary spoke about the need for pain relief in labour and for Indianising the process. The western model of pain relief in labour, which is manpower-intensive, will not do for our country, where an anesthetist’s time is hard to come by even for life-saving surgical procedures. Dr Shirish Daftary has several publications on this subject.
We look forward to working with this dynamic group, now headed by Dr Mini Namboothiri and Dr K S Bindu.