Kaaren Mathias works at Emmanuel Hospital Association in Dehradun district, Uttarakhand. She runs Project Burans, which trains community health workers who support people with mental distress and also raises awareness about the issue.

In an interview to Scroll.in, Mathias, who was trained in New Zealand as a public health physician, talks about her research in mental health and how social factors can precipitate mental illnesses.

Mental health professionals, especially psychiatrists, often describe mental health as a disease, bimari, like say a cold and cough.

First, the approach we are running with is using the term “psychosocial disability”. Largely, we see mental distress and focus less on whether there is a formal disorder or illness. Mental health is well seated under the disability umbrella. I do not see the need to put the label of schizophrenia, for instance, to respond to their needs in a community. It only causes more social problems. So we call it psychosocial disability.

You say that social determinants such as gender, economic and verbal and physical violence are risk factors. Are these two disparate, or linked?

So, as far as social determinants go, with my study, we are certain that caste, poverty, or lack of education cause mental distress and psycho-social disability. Our study shows that people from scheduled caste and scheduled tribe are three times more likely to be depressed as compared to people from general category.

People who have not completed their primary education are four times more likely to be depressed as compared to those who completed 12th standard. These are very sobering numbers

With such a strong stigma surrounding it, what has your experience been with caregivers of mental health?

I started off looking for experiences of exclusion by people with mental illness and found surprising trends. There were some really significant gestures of social inclusion made by people, particularly [those] living in communities in rural Uttar Pradesh.

We also found high levels of social support particularly if the caregiver was male. There was this one example of this man whose wife was unwell, and his neighbours were helping him out. They were sending his three daughters who go to primary school to school, and get them back, even when he was away for six months with his wife once. They even harvested his crops.

Kaaren Mathias

So, although there was name calling, and ridicule, harsh experiences of social exclusion, there were also other neighbours who were helpful and supportive. These are real results and strengths. Most western countries have nothing like that in place, particularly [of the kind] in rural North India.

The experiences for women caregivers, though, was much more harsh and they described a really clear trajectory of impoverishment if their husband or son had a mental psycho-social disability. They experienced social exclusion. Three women reported that they had been were thrown out of their family homes. Their in-laws had disinherited their sons and sent the family away.

How difficult it is for a person suffering from mental health illnesses to access care in rural Uttar Pradesh and Uttarakhand?

When I talked to state mental health authorities in Uttar Pradesh at the time of this study in 2013, they had told me that there were 10 government psychiatrists for the whole state of Uttar Pradesh which was shocking. I am not saying that psychiatrists are the entire story because they aren’t. But, they are one part in the puzzle. There are still lots of posts vacant

There has been a National Mental Health Programme in place, which is very imperfectly and inadequately implemented. Now the programme is functioning in 22 districts in Uttar Pradesh but not in Saharanpur. They have to travel four-five hours either to Bareilly Mental Hospital or to Meerut or Delhi.

In my study based in Bijnoir district and Saharanpur district in Western Uttar Pradesh, we conducted in-depth interviews with 20 people with severe mental illness. Nearly all of them had no access to government services at all.

How does this lack of access to care play out in rural areas? How do people manage?

With a vast majority of caregivers, it’s just amazing how much effort they have made for their family members. However, India’s health system is so highly privatised and so exploitative and avaricious in so many ways. The people have been sent for repeated CT scans, given unneeded medicines – they sold their buffaloes and land to pay for this.

Some of them travelled to Rajasthan to a dargah at Balaji, a renowned place of healing for people with mental health issues. It is clear that family members take huge measures to get help although they often don’t know how or where to go to get help.

There is a lot of traditional healers and beliefs that are exploitative. I am quick to say there are a lot of biomedical providers who are also exploitative.

It is difficult to live with someone who is quite unwell and disabled. There are some cases where the patient is a victim of violence in families. We met a family who was beating up a their son, who was talking to himself, for two years. Our team helped them get care in Bareilly Mental Hospital. He did really well. He had not spoken in two years, but when he said “papa”, the family had tears in their eyes.

How well does the community health model work? Or is it just a make-do system which compensates for the lack of access to psychiatrists and psychologists?

To be honest, the learnings we are getting from a low-resource setting like India, around community-based lay health workers – it’s not a kind of jugaad we are trying. It is actually that we do not need highly professional people for a majority of mental and psychological distress. What we really need is someone who is good at listening, kind, and is willing to give time for people to talk through and listen to their problems. This kind of problem-solving approach is being used in the West too, with good results. .

Based on your research of impact of social hierarchies on mental health, what do you feel about a case like that of Rohit Vemula? Some felt that his suicide was more of a mental health issue.

I do not know any of the details on Vemula’s mental wellness or otherwise. However there is no doubt that suicide is a huge issue in India. We have got one of the highest rates in the world. We know that in India, suicide has a much lower connection to mental illness than in the Western countries or the rest of the world. In India, it is much more frequently an act of desperation and distress. It is certainly linked to mental distress, but not to the extent it is in the West.

You work in rural Uttarkhand. What has the impact of demonetisation been?

On Thursday, I met four families who live with psycho-social disabilities, all of them hugely impacted by demonetisation. For all the people living on the edge, their incomes are dependent on small cash jobs. In one household I visited, the mother who was in her 60s was depressed, the father had had a stroke and had a physical disability. The only son was a tailor, and had no work for these last four weeks.

I asked them – what are you guys eating?. He said that they had a below poverty line card and were getting rice. A shop was loaning them other food stuff. We do not know what we are going to pay, he said. We are seeing this with the other clients of psycho-social disability too. These are all very fragile families living on the edge.

What kind of policy decision vis-a-vis mental health should be made in this country?

One of the strongest actions the government needs to take is addressing the kind of deep-seated structures that perpetuate inequality. So, a high priority is addressing the upstream causes of mental distress, such as providing good quality universal education up to 12th class, employment and housing, and ensuring function of schemes such as the Mahatma Gandhi National Rural Employment Guarantee Act.

We need universal access to health care, particularly in primary mental health care. Secondly, we need implementation of policies to ensure that all government doctors should have skills to diagnose and manage depression, anxiety, epilepsy, and also to recognise and refer most of the mental health illnesses, as the World Health Organisation recommends. Currently, our district hospitals do not even stock required medicines, or treat, or diagnose simple mental illnesses.

Thirdly, we need to to use new models that build on community resources. This where I think the model that we are developing with Emmanuel Hospital Association in different locations in Uttar Pradesh, Bihar and Uttarakhand has shown its strength. Working with community-based staff, with a high range of skills, we can deal with 50%-60% of the problem. I believe building on existing community resources through increasing knowledge and skills is the long term solution in a low resource setting.