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Getting down from the auto rickshaw after buying some vegetables and provisions from the nearby market, I saw a middle-aged woman standing near our front door. She looked familiar but then one saw many like her dotting the sides of the roads of Delhi – disheveled, weary, marked with poverty. As I approached her a smile lit up her tired face. She asked me if I wanted a cook. I replied that I did not want one. She said that why didn’t I give her cooking skills a try for she knew many dishes ranging from Hyderabadi Biriyani to Seekh kebabs. I asked her as to where she had learnt how to cook. As we got talking she said that she was from Aligarh a town in another state. Cooks were not paid well in Aligarh so she had moved to Delhi many years ago. She had not married for her elder brother had become ill when she was in her teens. Her parents died soon after, she said. As arranged marriages were still the norm no one was willing to marry her unless she cut off all ties with her brother which she refused. I asked her why the prospective grooms wanted her brother out of her life. She replied that he was mentally ill pointing to her head.
Her brother had been ill for more than thirty years. He lived in Aligarh with his younger sister who took care of him. He was well when he took his medications which could not be given regularly to him, she said. The money she earned in Delhi was sent to her younger sister by a Money Order for their living expenses and the medicines. The Money Order was often delayed. Then the brother had to go without his medicines. He would become withdrawn, not talk or eat, start talking to himself and slowly his behaviour would become so bizarre, even biting people who came to the house. When he took his medicines again, it took a lot of time for him to become better but he helped around the house, she said.
Her eyes misted when I told her that she seemed to understand her brother so well much more than the educated people. She said that he was such a loving brother. She would never forget the time in her life when he was well. Even then he was quiet – never expressed his love. He used to earn then and spent all his money on thoughtful gifts for their parents and his sisters. It was those memories that kept her going. She knew that it was the illness that had made him unable to earn a living.
Her day started at four in the morning as she worked in five houses as a cook. I thought, she did not know how to read or write but had the precious gift of understanding and a capacity to love that had triumphed all odds. So different from some of the well-off families that I had met, who had a family member struggling with schizophrenia. One mother, a wealthy doctor when speaking about her daughter’s behaviour always said -- ‘these people’ are so religious or ‘these people can never hold on to one job’ and so on. I felt so angry but never could tell her that having the illness did not mean that one had to be classified into a different category of ‘these people’.
Today this poor loving sister couriers the money so that it reaches her brother in time. She says she will bring her brother to Delhi when he is able to travel, to take him to a psychiatrist for it is years since he has visited one. It may take a while for the feeling of people staring at him is very strong, she says. It is people like her that inspire me – poor, leading a life of such hardship, yet so rich in understanding having the tremendous capacity to love.
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.
Thank you for your encouraging words. My prayers are with you and your sibling.
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.
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.
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.
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.
One of the biggest challenges is acceptance of mental illness.