December 21, 2005

Disability Day, Drug prices, Patriarchy and Support groups

Last year on the 3rd of December, the International Day of the Disabled people, I took part in the annual walk organized by Mr. Javed Abidi an eminent and courageous activist who has pioneered many improvements for people who struggle with physical disabilities. Mr. Abidi moves in a wheelchair. I went up to him that morning and asked him if there was any organisation present that day which represented Schizophrenia or mental illness so I could walk along with them. He said there were none. So I walked along with an organisation which worked with children with learning disabilities. It was a sunny day and I enjoyed walking with the children, their families and teachers. We sang songs as we walked slowly behind other organisations around the magnificent war memorial- the India Gate. One of the mothers insisted I help in carry their banner which I did. Later I shared their tea, soaking in the warm winter sunshine. We then parted, bidding goodbye, wishing each other good luck. Some wished me luck hoping that in 2005 I would walk with people with mental illness carrying our own banner.

Their good wishes helped for in 2005, we carried our banner to protest against the Patent Amendment Bill, before it was tabled in parliament in March. Along with people with HIV, we took part in a protest demonstration opposite the parliament to highlight the repercussions of high drug prices on the mentally ill in India. Unfortunately the Patent Act was passed by the Indian parliament in March without adequate safeguards. Following the passing of the Patent Act, a representation was made to the Chief Commissioner of Disabilities, Ministry of Social Justice and Empowerment seeking that all the drugs for treating major mental illness be included in the "National list of Essential Medicines" and that this list be constantly updated with newer effective drugs and brought under price control. The Chief Commissioner on the basis of this representation sent a letter to the Health Ministry and the Drugs Controller of India. Both are yet to respond. The reverberations of the Patent Act will be felt in the future, like a Tsunami, when people living with mental illness and their families in India will not be able to afford a new drug that offers a cure or a new drug that could alleviate the distressing and disabling symptoms of schizophrenia.

This year on the 3rd of December, I attended a meeting held by Action Aid India. This was probably because we had organized a few support group meetings for caregivers at their office last year. Those that attended the support group were the fairly well off. Since a heterogeneous group of caregivers from all sections of society was wanted for the meetings, I had to make several visits to government hospitals to meet the head of the department of psychiatry to take permission to distribute notices to families. I met many families. A lot of people wanted to attend the meetings. Most could not. Many who wanted to attend could not leave their ill relative alone at home because there was no one to take care of them. Some mothers wanted to come - either their husbands would not allow them or they were too frightened to ask them. Patriarchy came in the way. At the hospitals I listened to the venting of emotions of weary families feeling all the more helpless unable to help them .I was finding it difficult to drive in my own car in the chaotic traffic of Delhi so I had to spend a lot of money in auto-rickshaws for transportation. Action Aid gave us space to meet and helped in photostatting notices. For funding, I was asked to put up a proposal which I did. Unfortunately months later I was told that the head of Action Aid had changed and the future of the proposal was uncertain. That was the end of the support group meetings at their office. I never heard from them till I received an invitation from them for this years Disability day function. Meanwhile I had moved on - to form a self-help advocacy group, the beginning of an unimaginable and unforgettable journey.

Thank you for all your comments.

Dear Antonietta,
Thank you for your encouraging words. My prayers are with you and your sibling.

Dear Moeder,
You had written – “The thought of my child not surviving is unacceptable and it is what keeps me fighting and striving for wholeness in her life.” So thought provoking. Probably this is what drives us through the periods of intense struggle, the resulting exhaustion while helping our children battle schizophrenia. My prayers are with you, Cassie and your family.

Dear Ann,
Thank you for your birthday wishes. I hope you and your son are well. My prayers are with you.

Dear Jim Crowe,
You had written about the hospitals in India 'they are grossly under funded and in very poor condition'. Yes there is a crying need for improving facilities in hospitals, building more hospitals and rehabilitation centres. In India ignorance prevails alongwith stigma. Most do not know that these are severe illnesses of the brain. India has a National Mental Health Programme formulated in 1980 wherein public health education is mentioned as one of the goals. Strangely the government has its head buried deep in the sand despite the growing numbers of people with mental illness. Best wishes to you and your family.

Dear Tom Ilsey,
You are so right that living with families helps people with mental illness. Families need to be supported not ignored by our government. God be with you too.

Dear saifuddin,
Please don’t give up. You have helped your wife for so many years. We need to live with hope. My prayers are with you and your wife.

Dear mvkulkarni,
So true - we need to share our experiences. It would help us to battle sz. Best wishes to you and your son.

Dear Subimal Palit,
Your son can give private tuitions. That itself is a great achievement for someone struggling with this illness. I can understand your feelings but there is a place for everyone in this world, however imperfect we are. My prayers are with you.

Dear Dinesh,
One of the biggest challenges is acceptance of mental illness.

Posted by survivor at December 21, 2005 10:15 PM


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