Books

‘Writing about the Diminishing Capacities of a Loved One Takes Courage’

An interview with Ritu Menon of Women Unlimited, which has just published Ranabir Samaddar’s Krishna: Living with Alzheimer’s (2015)

File photo of the publisher, Ritu Menon

File photo of the publisher, Ritu Menon

Some books just happen, as publisher Ritu Menon will tell you. About a year ago, Menon, who heads the feminist publishing house Women Unlimited, received an email from friend Ranabir Samaddar, a leading social scientist and director of the Calcutta Research Group. Samaddar, known for his work in the area of forced migration studies and human rights, wanted her to take a look at something he had written. “It is not a text on my usual subject. I don’t even know if it is a book for you.” In the next few days, Samaddar’s account of his wife Krishna Bhattacharya’s fight against Alzheimer’s, titled Krishna: Living with Alzheimer’s (an educationist, Dr. Krishna Bhattacharya passed away on September 6, 2013), is scheduled to reach the bookstores. In an interview Ritu Menon tells Chitra Padmanabhan that she considers Samaddar’s account to be that rare work which balances the voice of personal experience with the insights of a social scientist with regard to what he calls the ethics of care in a society where the incidence of Alzheimer’s and other dementias among the ageing is estimated to be as high as 47 per cent. Excerpts from the interview:

Your new release, ‘Krishna: Living with Alzheimer’s, as well as your 2014 publication, Reshma Valliappan’s ‘Fallen Standing: My life as a schizophrenist’, deal with accounts of mental health issues.

I have wanted to publish books on mental health for a long time. As you know, mental health has always been one of the great unmentionables in Indian society because of a certain stigma attached to it, although everybody has some experience of it either at close range or within a familiar circle. The problem is that it is not easy to get material that is not of a medical nature, and that is also hard to come by.

What I am interested in is first person accounts — the kind of writing that is a result of an experience, which also requires that you are one step removed from it before you can write about it. That becomes even more difficult.

I thought this was an opportunity to be seized not only because the accounts of Ranabir (and Reshma earlier) are extraordinary texts but also because they seem to have come at a point of time in the individual’s experience when society, too, is opening up a little bit more. You have a Deepika Padukone who can actually speak about suffering from depression and people like stage and film actor Mohan Agashe who are willing to make films (in Marathi) on Alzheimer’s and act in them.

What was your first response to Samaddar’s manuscript?

I knew it was something I wanted to publish. It is not easy to get an account from first-hand experience with a perspective. And it is very rare for it to be written by a man about his wife or close family member.

Why is that so?

First of all it demonstrates vulnerability, which is difficult for many men to acknowledge. Secondly, it requires of them a certain humility in writing not only about someone else’s experience of distress but also diminishing capacities. But two or three such works in recent times that have become an important part of the response to Alzheimer’s in terms of care-giving — John Bayley’s memoir of his wife Iris Murdoch and Harvard psychiatrist Arthur Kleinman’s account of the dynamics of care-giving for his wife Joan – have, I think, encouraged someone like Ranabir to write about his experience. It is an uncommon act of courage to put it out in public and wait for how people respond. They can be very critical or supportive and you are open to both. For a social scientist to put out a personal account like this is even more difficult to do.

Is that because of the way they are schooled in their discipline?

Yes, social scientists are very wary of personal narrative. They are so enmeshed in a disciplinary mode that in order to shed that and write from experience is a whole new order of writing.

What’s interesting here is that Ranabir has brought his academic preoccupation with the ethics of care on the subject of forced migration and conflict to bear on the care that people with Alzheimer’s require. As he says the medical establishment is not able to do that. Theirs is a medical response to the condition but there is no medical palliative for Alzheimer’s.

What does he mean by ethics of care?

His view is that the state usually responds to forced migration— one of the biggest issues facing the world at present – from a bureaucratic or political or pragmatic point of view. What is required is a compassionate response whereby the state’s mediation is built upon an acknowledgement of the distress that is experienced by the migrant or refugee; it is not simply a question of giving them housing or rations.

Ranabir has made this idea commodious enough to accommodate a condition such as Alzheimer’s which he says can be dealt with by families and society only if we develop an ethics of care. The medical establishment is unable to do so for obvious reasons but it does not even bother to acknowledge this as a necessary part of treating something like Alzheimer’s that can only be managed, not cured. That is his thesis and he has interwoven it in his work.

So this book straddles both worlds.

It is, I think, an attempt to bring the two things together. He is also speaking about the medicalising of treatment, the ethics and economics of caring for someone with Alzheimer’s. It is hugely expensive and no insurance company will insure you for a degenerative brain ailment. The entire experience as it unfolds at several levels is part of his account.

At any point does the author express the feeling that he is on his own because people don’t understand?

People may not have understood but he has a responsive community – friends, wonderful caregivers who helped with managing the situation for about five years, colleagues and some family (he has no children). But there is no social system of care and the medical response is always only medical.

Inadequate?

He thinks it is not adequate because he is speaking from his experience.

How important is the author’s articulation of the notion of care in the face of India’s increasing ageing population?

His thesis that care must extend beyond individual and family and to state and society is extremely significant for as he points out there will be a considerable percentage of older people suffering from various forms of dementia, such as Alzheimer’s. As it is, caring for the old is becoming difficult and when it is a debilitating condition you can imagine what that will mean. We have had a lot of response to our advance information on this book, with people wanting to buy a copy saying they have a family member or someone close with this debilitating condition. A work like this makes people feel that they can find some sort of discussion here which is difficult to find otherwise. Writing on mental health, to be able to communicate, has to resonate in ways that people can own or identify with.

What is the significance of accounts such as ‘Krishna…’ in a world wanting to be ageless, forever young and free of disease?

Accounts like these force you to acknowledge that the body and mind have their limits. We can’t all be gymming and nipping and tucking and in any case it is totally external; what’s inside is not amenable to that. Yes, you can have a healthy lifestyle but it does not make you eternal.