Care giving in Mental Illness is a delicate and often frustrating proposition. Most caregivers find themselves ill equipped to handle the situation arising out of severe Mental Illness of a loved ones.
Ratna Chibber is made of different mettle. 5th Edition of Satyamev Jayate, well deservedly tweeted on 2nd November, 2014 about her in its episode about Mental Illness-“Ratna Chibber not only got her schizophrenic brother treated, but also led him to earn his own living”.
Ratna ji’s story might have started with her brother but sooner from there it spread its wings to the bigger canvas. And she is not alone in her journey. She has been joined in the journey by equally passionate, compassionate and committed daughter Tanya and together they are re-defining and re-weaving the very concept of care-giving in severe Mental Illness.
Their work is all about dignity and self- sufficiency of severally Mentally ill.
I have had the fortune of knowing Ratna Chibber and her daughter Tanya Dutt for more than seven years now, but each time I meet them I find a new zeal in them. Silently but surely, they have been brick by brick, day by day, reinventing the very art and science of Care Giving in Mental Illness.
Akhilvaani is grateful to Ratna ji and Tanya to share their journey, thoughts and perspectives on this platform.
So here are we. And conversation with Ratna Chibber and Tanya Dutt starts now-
Akhilvaani: Question 1:
War veteran Ratna ji and young turk Tanya, welcome to Akhilvaani, a platform to “Open-UP, Own-Up and Talk Mental Illness”. It is where Hope, Love and Pride for Mentally Ill is celebrated.
Ratna ji, I have had the fortune to know you for long. But in every meeting with you my respect for you goes up manifold. Though I have some knowledge of your journey, for the benefit of readers tell us, about how did you take the cause of Mental Illness.
I grew up in a typical Punjabi middle income household where daughters were to be married and leave home and the sons would be the ones to earn and look after the parents in their twilight years. We were a family of four – my parents, brother Sushil & I.
Sushil was studying to be a mechanical engineer. We observed a change in his behaviour in the last semester of his studies which became very pronounced in the months that followed. Our lack of awareness & knowledge about mental illness aggravated his illness. My ageing & pensioned father wasn’t able to cope with this. I saw my dad pleading with people to help his son. The sight of my father almost on his knees kept haunting me.
It was during those turbulent moments that I thought of stepping in & brought Sushil along with me to Chennai with the consent of my husband. I took him to Dr. Sarada Menon who was referred to me by a family friend and the meeting with her changed my outlook towards people with Mental Illness completely.
In time I saw the turmoil that was taking place within my own family. I could sense the displeasure from my husband for the time I spent with my brother. He resented Sushil being a fixture in our family. I was torn between a sense of duty towards my family and love for my brother. This created a big fissure in our relationship. I was given an ultimatum and asked to make a choice between my husband and Sushil. I opted for the latter. I realised that without my support Sushil would wither away. My parents could in no way support him and Sushil was too ill to support himself.
Akhilvaani: Question 2:
As a natural corollary to question 1, you made the supreme sacrifice of leaving the bliss of matrimony after 18 years of marriage to take care of your bother suffering from Schizophrenia. And soon you metamorphosed in taking the cause of providing gainful employment to Mentally ill persons through AASHA Foundation, Kromatiks and Atma Nirbhar.
Walk us through the difficult untraveled road that you traversed.
Contrary to what the general perception is about my sacrificing my marriage, in reality it was a total relief from a tormented life that I was leading where there was no meeting point between me & my ex husband. It was a relief from a cesspool of miseries that I was in.
We parted peacefully. But I had to think of my livelihood as I had to take care of my children, brother and parents who had moved from Allahabad and were living with me and so I started Kromatiks – a speciality chemical manufacturing unit in Chennai. I engaged Sushil on the shop floor and asked him to do the work he was able to do. And I soon realised that work played such an important aspect in bringing about a routine to his everyday life and soon after I employed more user survivors in my factory.
In this journey as a caregiver of my brother, I met many families whose stories were worse than mine. While I was taking my brother for treatment to Dr. Sarada Menon who was based in SCARF at that time, she came up with the idea of forming a caregivers group where we could support each other and look at care options for our family members. In 2001 she asked Aasha to take over an existing facility which was on the verge of closing down where 18 people with mental illness lived. Aasha took over the clinic & brought in a lot of reforms, with the idea of turning it into a home away from home.
It was very disheartening to see bright, educated men whose families could not keep them at home living in deplorable conditions just because they had a mental illness. To me they appeared to be more functional and present than my brother. At Aasha we started working on providing structure to their days, nutritious food, clean atmosphere and vocational therapies. After some time we realised that the residents didn’t seem very interested in the conventional vocational therapy and would talk about working on computers and jobs outside.
At the time we had written to Abilis Foundation in Finland asking for funds for occupational therapy. The funds were granted and with a lot trepidation we opened our first stationery and general store located right next to Aasha Rehabilitation Home.
The residents from Aasha home were asked to work in the shops for which they would be compensated for their time. Only three residents volunteered in the beginning. This changed when the working residents would return to Aasha home in the evening and recount their day, meeting customers, earning money, etc. Numbers increased as the days passed and it became difficult to accommodate every one. We started working in shifts. They worked from 8 o’clock in the morning to 8 in the night in shifts.
There was no looking back after this as far as rehabilitation was concerned and we opened 3 more stores and a paper cup production unit. I continued to employ user survivors in my company and currently there are 5 user survivors working there.
In 2012 during a conversation with my daughter Tanya who works with me in Kromatiks, I realised that both of us believed that being employed and working was very significant for the rehabilitation of a person with mental illness. And so we started Atmanirbhar which means Self Reliance with a focus only on employment for persons with mental health issues.
Aasha would provide a home and Atmanirbhar would provide rehabilitation through gainful employment.
Akhilvaani: Question 3:
If I recall my 2010 meeting with Ratna ji and you Tanya at Chennai, you had already taken the plunge to make difference to the cause of Mental illness and over the years your commitment has only grown. Educate us about your journey, including the decision to get married in a family, where from day one of marriage you also had to done the role of a caregiver to a close relative suffering from Mental Illness
Having grown up in an environment where I saw my mother being a caregiver to my uncle and strive to fight against heavy odds to provide him a life of dignity, it was quite natural for me to be inspired to follow her path.
I would accompany her to AASHA meetings from when I was 10 years old and I started interacting with the care givers and user survivors who came to live at AASHA home. This only made my resolve stronger to help them in any way I could.
When I met you Mr. Sahay in 2010 I was working at “The Banyan” because I have been a long admirer of their work and it was indeed an extremely eye opening experience for me to be working with homeless people with mental illness. My prior interactions had always been with user survivors who were not at the poverty line.
Working at The Banyan brought home ground realities of intersection between the mental illness and abject poverty/destitution.
In 2011 I joined my mother in the family business Kromatiks as well as I took on a more serious voluntary office as Secretary of AASHA. Until then I had always been an unofficial volunteer at Aasha – I would hang around Aasha meetings and do whatever I could to be useful, stack chairs at a meeting, compere at functions, write blogs or articles and of course spend time with residents most of whom are friends who I know for years.
In 2012, mom and I started ATMANIRBHAR where we wanted to focus only on creating and generating employment avenues for people with mental health issues. Mom had years of experience in employing user survivors in her factory and then with the success of AASHA employment project – where AASHA had opened general stores -the first of their kind- which were completely run by user survivors. Residents of AASHA home would work in these shops and earn money which increased their self esteem tremendously and a true sense of rehabilitation and reintegration became possible.
I felt most energized with this concept of self reliance because it focused on a solution and a path into the future. It was very difficult to find employment for people with mental illness, they were unable to sustain at jobs, there was a huge gaping hole for employment options for people with a mental illness.
And yet we knew that employment was possible, sustaining employment was possible, becoming independent and self reliant was possible and so both of us decided to pool our energies and resources and focus on creating employment solutions for people with mental illness.
We separated the employment project from AASHA so that AASHA could focus on providing a home away from home and Atmanirbhar would focus on employment and the future. Our employment units employs people referred to us from other institutions, independent enquiries and Aasha.
Knowing that my sister in law had a mental illness that was similar to my uncle’s made no difference to my decision of marriage. If only it made more empathetic to her because I was able to understand and support her.
I did not know the family from before and the stigma is as such that I was not told about her until after a few months after I got to know them even though I have always been open about my uncle from day one. My mother always told us that there was nothing to be ashamed of my uncle. He is family and since we have never thought any differently, none of the people who came into our lives could treat him any differently.
My sister in law passed away from a cardiac arrest a few years ago and in the time I’ve spent with her I don’t remember having a single unpleasant encounter with her.
Sometimes I think it was destined for us to meet, for me to love her and give her a home at least for some time. A thought I cherish of our time together is that her last birthday she spent with me and we spent time doing things she loved.
Now that that part of my life is over I have become more dedicated to serving the cause of mental illness. I make use of these experiences I have had to direct my interactions with the user survivors I work with.
Akhilvaani: Question 4:
From AASHA to ATMA-NIRBHAR, how fulfilling has been the journey. What are the challenges you have faced in providing gainful employment to severely mentally ill. And how you manage the difficulties on day to day basis.
Starting the first shop in itself was a huge learning experience for me.
In the beginning I would supervise the user survivors who worked there on daily basis.
But after a while they stopped waiting for me and began making decisions related to running the shop by themselves.
In the ensuing months I became more and more sure about my belief that a person with mental illness could be employed and would be able to sustain at employment. It is a myth that they can’t hold their jobs.
I saw a lot of light at the end of the tunnel and the user survivors motivated me no end. I became focused on gainful employment for user survivors and I strongly believed that this was one way to beat the stigma and mainstream them.
There were many challenges, primarily on how to financially sustain the shops. To be able to run the shops uninterrupted & pay their wages on the 1st of every month. We worked out the fixed costs. The mark ups were low and had to go with the prevailing market rate. We pooled in our resources during that period & built enough capital to start another shop. There was no withdrawal for fixed expenses. We needed more sales outlets to accommodate more people .
Many of our star performers grew ambitious ( rightly so ) and wanted us to find a better job for them.
The second biggest challenge came from the families.
Most of them felt that this was a permanent solution and refused to discharge them from Aasha home because not only were they being taken care of but also were gainfully employed. Every family wanted their ill family member to work in the shop and we did not have enough capacity to include everyone. To ease out this situation we started Atmanirbhar trust where we brought in our own family resources and could employ more people.
Some of the other challenges are to find a space to open a shop because of the stigma of mental illness.
(Both Ratna ji and Tanya can contribute)
I am very grateful for the opportunity I have at Atmanirbhar and Aasha to use my learning, experiences, empathy and see happy faces, watch successes that may seem minor but which make a huge difference to the people who have achieved it.
When user survivors have stopped thinking of themselves as burdensome and it doesn’t hurt as much when some unloving caregiver may call them a burden again because they have now proved to themselves that it’s not true.
When I see ageing parents with tears in their eyes look at their child anew, not believing that he is working month after month, is busy working 6 days a week, it is almost disbelief and yet immense gratitude that flows through them.
It is indescribable how fulfilling this is.
Akhilvaani: Question 5:
In recent years to make greater impact and to scale up the success of ATMA NIRBHAR you have collaborated with another great institution The Banyan. How did the collaboration start and what is needed to scale up such efforts?
I would approach my friends, Kromatiks customers, other NGOs like The Banyan and SCARF to purchase their consumables and peripherals from us so that the increase in sales would help in sustaining the shops and also build up capital for more employment avenues.
We were ready to deliver at their door step. Everyone helped in their own way but The Banyan began buying more and more items from us and then came up with the idea of Atmanirbhar taking over their entire consumption and run it as a departmental store.
This is a fantastic collaboration between both the NGOs and is continuing successfully.
We have now opened another store inside the campus of The Banyan Academy of Leadership in Mental Health (BALM). This store caters to the students who come to study there, the faculty and the Banyan residents who live there. We have 9 User Survivors working in these 2 stores.
More NGOs and institutions can collaborate with each other with this same model as we have done and this will result in more employment avenues.
Akhilvaani: Question 6:
AASHA for more than a decade and half has been literally working as “Caregiver” to a group of people (from outside your own family) severely suffering from mental illness. The New Mental Health Act, 2017 for the first time recognizes the role of organizations like yours to be formal “Caregivers”.
Having ratified UNCRPD in 2010 by Government of India, the new Mental Health Care Act, 2017 is the best attempt anybody can think of by the drafting team. It is in total compliance with UNCRPD.
There are many firsts in this bill – Decriminalising suicide and rightfully including user survivors in insurance cover is the highlight. My problem with the legislation is the “ delivery”. How serious is our government to implement it, will have to be seen.
Akhilvaani: Question 7:
Ratna Ji as we grow old, we are finding that geriatric mental health including dementia of all varieties is becoming a major concern and the country is not prepared to handle the situation. What solutions you think can be tried particularly in community setting?
It is the families who have to take care of the ageing family members but many a times they are driven out of their homes by their families itself particularly if they have dementia or related health issues. There are many community homes run by NGO’s & some government funded homes which are in deplorable conditions. We need to sensitise the youth and have more regulated community run homes.
Akhilvaani: Question 8 :
Tanya it is our youth which is sitting at the cusp of Mental Illness pandemonium also maximum suicide and suicide attempt in the country is in the age group 14-29, going beyond official policies and statutes what specific steps are needed in the country to promote Mental Health and create awareness about Mental Illness among the youth.
One of the most important tools we have easily available today is the internet and social media and I think these mediums should be leveraged to the maximum to create awareness about mental illness.
Use these mediums to create-(as you have so wonderfully done with Whole Mind India Foundation & your twitter handle) awareness videos, blogs, pages, twitter feeds to educate people about what mental illness is, disband myths about their unemployability, suicide prevention programs and help lines, buddy systems.
The print and television media will pick up these threads from social media and hopefully create their own campaigns and stories that can be regional as well as national and reach even the rural areas.
Educational institutions should have guidance systems for people who are vulnerable and need some to talk to who often are not their family and friends.
Mental health should become a conversation that is started in school.
Parents should be honest to their children about their own mental well being and how it is as important as physical well being.
Create environments of discussion and questioning at home, in schools, in the office.
Akhilvaani: Question 9:
Ratna ji and Tanya both of you are/ have been caregivers to Mentally ill person in real life. It is axiomatic truth that life of a caregiver is as difficult as that of the sufferer of Mentally ill person. What coping strategy do you employ/ have employed and what message you have for caregivers who often are either in denial mode clue less as to what to do
Being a caregiver is filled with hardships and difficulties.
Devastated families at times are unable to come to terms with the illness of their loved ones. Remaining in denial only aggravates the trauma. Only after acceptance one starts looking for solutions.
Family members need to educate themselves about the illness and find ways to care for their ill family member.
Meeting other caregivers was of great comfort to me. In fact it healed me to a large extent. I found their stories much worse than mine. Being of support to them calmed my nerves & gave me strength to carry on my work.
I haven’t looked back from my mission of helping other care givers and looking for ways to rehabilitate people with mental illness.
One of the things I would do is not deny or dismiss their right to express themselves.
Validation and empathy do work.
My sister in law and my uncle both were diagnosed with schizophrenia but as people were very different from each other. Where my Sister in Law would get angry if things didn’t go her way, my uncle is very anxious and fearful as a person.
With the former I would never get angry in return and keep a distance if it was something beyond my reasoning with her, with my uncle I keep reassuring him and telling him not to be afraid of anyone.
I think talking to other caregivers helps tremendously in understanding the situation in the family. It helps families understand that they are not alone in this situation, that there are others who are going through the exact same thing they are going through and how to cope with this situation.
AASHA was formed exactly like this when my mother met other caregivers in the same situation – they came together to start AASHA with the idea that together they would be able to find solutions for their ill family members and in the process provide support to each other.
I would advise caregivers to educate themselves about this illness and coping strategies – there is lots of reading material available now that will help them understand the illness. Mr. Amrit Bakshy from SAA has written a very informative book for caregivers that details his journey as a caregiver and has guidelines and resources that are helpful to caregivers.
Akhilvaani: Question 10:
Stigma around mental illness is extreme in Indian society. Both of you must have seen it from very close quarters. Moving beyond the confines of statutes, policies and programs, what specifically is needed to be done to reduce stigma around mental illness
Have conversations around mental health at home, educational institutions, employment venues, government structures, making mental well being as important as physical well being. Cinema/television media can play a huge role in propagating information or demolishing stereotypes related to mental illness.
At AtmaNirbhar we are showing that gainful employment is a possibility and people with mental health issues can be productive, self reliant and independent. Similarly if employers opened their options to people with mental illness, the stigma of having a mental illness will reduce.
Akhilvaani: Question 11:
The New Mental Health Act is being hailed as revolutionary by many. Still there are mental health professionals who are not happy with the Act. Also there are Mental Health Activists who have dubbed as too little too late. Ratna ji and Tanya what is your individual take on the Act
I think MHCA is an excellent piece of work. It was an honest attempt by the people involved to make it in compliance with UNCRPD. The whole process was extremely democratic. They need to be applauded. There are skirmishes but does not have much merit.
I believe that it is a fabulous step forward for people with mental health issues. By having options like the advance directive that enables the user survivor to choose their caregivers, abolishing ECT on children and ECT under anaesthesia for adults, decriminalising suicide the bill is striving to be humane and inclusive.
Akhilvaani: Question 12:
what is your wish list and dream for Atma Nirbhar and other programs going forward
Gainful employment is the best way to dispel some of the myths about mental illness & according to me the only way of mainstreaming people with Mental Illness. Our goal at Atmanirbhar is to generate more jobs, rehabilitate and reintegrate them into main stream society.
Our first store at AtmaNirbhar opened in May 2014 gainfully employing 2 User Survivors(this store has 7 user survivor employees currently), today we have 4 stores in Chennai and employ 18 User Survivors across them.
In 2017 we want to open 2 more stores in Chennai. At AtmaNirbhar we want to showcase that employment, self reliance and reintegration is possible. We want to collaborate with other ngos and corporates to create employment generating ideas for people with mental illness.
In the current year we will also be researching the effects and outcomes of working, being productive and mental health. There is a lot work to be done in this arena of employability for people with mental illness and it is exciting and invigorating to be doing this because we are working at solutions for enabling independence and empowering them.
Akhilvaani : Question 13:
Ratna ji and Tanya, what is your final message to sufferers of Mental Illness and Caregivers.
Treat mental illness as any other illness . We need to shed the stigma from our minds first .
Love them & treat them as equal.
Empathy first and solution next is the way to deal with this illness.
Reach out to people who have been in your shoes because you are not alone as a User survivor or as a caregiver.
Treatment, Rehabilitation, Reintegration – these are possible, find methods that work for you.
As a family we went through very turbulent times because of this illness and yet it has given us a mission and a purpose to lead more meaningful lives.