Books

“We Need to Hear Voices From the People We Call Disabled”

In an interview, Jerry Pinto talks about putting together a new collection of essays on mental health, the limitations of art, what it means to survive and why you must beware if you have a writer in the family.

Representational image. Credit: Steve Snodgrass/Flickr CC BY 2.0

Representational image. Credit: Steve Snodgrass/Flickr CC BY 2.0

When Jerry Pinto was awarded the Windham-Campbell Prize earlier this year, the award website described his writing as “deeply empathetic, humorous and humane, drawing on personal experience to tell stories much larger than the lives they contain.”

It contained special praise for Pinto’s debut novel, Em and the Big Hoom, for “an acute exploration of the impact of mental illness on intimate relationships, as well as a window into the fraught lives of the Goan Christians of Mumbai.”

This novel, based on Pinto’s own experiences of his mother’s bipolar disorder, inspired many people who had similar experiences to confide in him. Eventually, some of these testimonials made their way into A Book of Light, a powerful collection of essays on living with a loved one who has mental illness, which Pinto has edited.

Credit:jerrypinto.com

Writer Jerry Pinto. Credit:jerrypinto.com

In a conversation with Sexuality and Disability, Pinto spoke about putting together the collection, the powers and limitations of art, what it means to survive and why you must beware if you have a writer in the family.

Below are excerpts from the interview:

You begin your introduction to A Book of Light with an anecdote about being asked in public by a journalist you considered a friend about whether you felt guilty about ‘using’ your mother’s illness to write Em and the Big HoomThis line of questioning feels like an obvious symptom of the way in which conversation and art about mental health and so-called ‘family matters’ are pushed to the realm of the private. And as a writer, you’re expected to ‘use’ stuff from your life, so would you even get the same questions for other kinds of material?

I think you’re right. I think my journalist ‘friend’ was trying to score a kind of point. I don’t think she was even aware of what she was saying. But I do remember feeling: ‘Guilty?’ And the problem with that word is that we are trained to think, ‘Oh. I wasn’t feeling guilty up to this point in time. Does this mean I don’t have an active enough superego? Have I let down my moral side? If X feels I should be guilty, could that mean she has a higher moral standard than I?’ And so it goes.

But the truth is we invest a great deal of time and energy in maintaining a certain view of the family. We are a tribal lot and our first responsibility is to the unit of the family. This must always seem like the perfect place to be: father and mother as loving-caring-giving elders; children as serving-learning-growing offspring. The truth as we know it is much more fragmentary and the evidence is much more damning.

The family is the site of so much of our psychodrama: it is where we are nurtured and where we are loved. It is also where we are made to feel inadequate and where we are most often shamed for not measuring up to some standard that has been set in an arbitrary fashion.

What I did, seen from that perspective, could be seen as an act of betrayal of this picture postcard family. People ask: what is the need to talk about these things? The only answer to that is: not talking is much, much worse.

I always warn people who have a writer in the family – you should be very careful. You have no idea when you will turn up in a story. This comes with a caveat: no writer worth his salt will put a real live person into a work of fiction. They would simply overwhelm everything. You can only abstract bits of the person to create a story, a credible work of fiction.

And that abstraction is likely to be a composite, made of a scrap from X and a speech pattern from Y, an ailment from Z and a condition of mind from P. So yes, there is always this tension between the real and the imagined, the use and the abuse of family history. Things are particularly difficult when there are two writers in the family and both ‘own’ the story in a way.

Finally, I suppose one must answer to the court of the self. And let me say: I try to be as dispassionate and objective a judge as possible and I may well have failed.

Following on from my previous question, the collection – by its very nature – is intimate and profoundly personal. You’ve written about how you went about getting those stories and you’re incredibly compassionate about people who had to back out of the collection or refused to contribute to it. Are you at liberty to talk about any stories that were almost part of the collection, that you wish had made it?

One of the most important things to recognise is that the story is not owned. No writer owns his or her story. It is only yours when it is written down and it is claimed as yours.

One of the stories I was told, one that didn’t make the book was about this woman, a secretary, who was caring for her brother who had in a psychotic rage tried to strangle his mother and left her partially paralysed. The secretary runs between the home where her brother is and the home where her mother is; she does a job of work and halfway through our conversation, she excused herself. She said she had to go and do her St Vincent de Paul (SVP) work. The SVP is a parish church organisation which helps the poor. That this woman, who is so burdened, should find it in her to help with SVP work sounded nothing short of heroic.

I would call her from time to time and ask if she had got the story done and she said she hadn’t and finally she said she just did not have the time. Could I ask her to put down her mother, put down her brother, put down the poor she was serving and write the story? I could, I suppose and it could even be argued that in telling her story, she would be serving more people. But the immediate in the family trumps the long term. Ask any mother with a hungry child; she must feed the child before she attends to her muse.

At the end of the introduction, you’ve added a call for more personal narratives about mental health and given an email address where people can send these to you. What do you plan to do with these narratives – will they become another collection?

I have no idea. I don’t know if I could do this. Perhaps someone else could edit it. Perhaps there could be a website. But I wanted that door to remain open. I wanted this to be a process, not an event. But what form or shape that process takes need not involve me nor be mine. I hope that just the fact that the door is open will bring other people through it.

Reading the essays in A Book of Light brings one truth forcefully to the fore: that survival has a long life. The pain that mental illness can cause – both to the person living with it and to her loved ones, can last a long, long time – even after the person herself is gone.

One of the questions I was asked after Em and the Big Hoom came out, was: Has this book helped? Have you achieved catharsis? The easy way to skip around that question was to say that technically it is never the maker of the art work who is supposed to achieve catharsis; it is the reader, who, in seeing a reflection of her world, achieves this release. That was not mine to answer. But I could see what this meant.

One of the great beliefs about art is that it can heal. This is only partially true. Art cannot heal on its own. Nor is it meant to. Art is one of the many ways in which we heal ourselves and our society, but if I were to expect Em and the Big Hoom to work some interior magic, sort out the shell-shocked and mixed-up person I am, I would be putting an unfair pressure on it.

Talking about what has happened, writing about it, expressing it in an art form whether it is dance or music or literature or the plastic arts is only one part of the whole. Then one must make a number of decisions to turn towards the light. These seem easy to do, but they are difficult to stay with.

To keep going to the yoga class, to keep on exercising, to keep eating healthy, to keep looking for cheer in a dark world, to keep reaching out, to look beyond the periphery of the self, to do some work, to take charge of one’s emotions and own them, all these are the daily challenges everyone of us is set but to someone battling a past, these are accentuated.

And so I began to offer a metaphor. Imagine you are on a long hike with a heavy backpack. This has been cutting into your shoulders. You ease your thumbs under the straps and pull the pack away from your shoulders. There is a miraculous sense of release from the pain but you know even in that moment that you will have to settle it back on your shoulders and it will cut in a different way and hurt in a different way and you will have to grow used to that.

But at the end of the hike, you will put down the pack, your body will rejoice, you will have bragging rights about the hike; you are flooded with a sense of achievement, it was all worthwhile. (I hope.)

Was it a conscious decision to invite narratives from people who were closely related to people with mental illness? This is as opposed to people with mental illness writing their own stories.

I wanted the book to be a combination of both. However, here’s the thing about writing. It seems easy to do until you actually sit down to do it. Then it becomes a challenge, an act of manual labour, of putting one word down and then the next. The idea in your head is perfect; the words are coming out wrong. You’re trying to present the facts, only the facts seem to be slipping away and confusing you.

You realise you should ask X whether she minds being in your piece. You want to say that Y was really helpful but also a bit of a school teacher, constantly telling you that you shouldn’t be doing this. If you present him in that way, will he hurt and will you lose his support when you need it next? Then there’s the fear that this might exacerbate your situation, bring old demons back, open old wounds.

How could I pursue these writers with the usual threats and cajoling? I could only remind them and hope. I would get some scalding replies: Don’t harass me, isn’t my life tough enough? I would get some replies de profundis: I don’t know that I can do this. I don’t see the point. But most often it was silence and I respected the silence too.

As a teacher, how do you feel that our educational institutions can provide more support to students with disabilities or students who have family members with disabilities?

The educational system should… of course it should. But it is under tremendous pressure. If it fails the students who do not have ‘disabilities’, how could it help those who do?

But let me say here, that we are all with our disabilities. There is mathsphobia and there is procrastination. There is the student who is contrarian to the point of self-destruction and there is the student who can’t see the blackboard.

There is the student who has eidetic memory so he does not bother to understand what he is reading; he just commits it to memory and spits it out. There is the student who is a first-generation learner who understands nothing the teacher is saying. There is the student who finished a degree in engineering but cannot draft a simple leave application.

We’re all hobbling along, making the best we can of what we have. I don’t know what the solution is. I wish I did.

One of the things that Em and the Big Hoom did marvellously was tackle the subject of sexuality and disability. Em can be incredibly frank about sex, much to the mortification of the narrator. Can you tell us how you feel about people with disabilities being seen as asexual?

It is now a matter of general agreement that we are all sexual beings; society, through its operations as law, now requires you to be of a certain age before you express that sexuality. Disability has nothing to do with sexuality. But there’s another layer to this. Sexuality is inextricably complicated by the fact that the person must be attractive to you.

We are taught to look for physical perfection. We are taught to aim for it in ourselves. Even things that are not ‘a disability’ are made so: dark skin for instance; penis size in men; our weight, our height. Beyond a certain age your claims to being a sexual person are always mocked — the old must not want.

We may all be sexual beings but we have hedged our sexuality around with many barriers. Then there is all the possibility of abuse to be considered. When a young woman with Down’s syndrome wants to marry, what is our response? When the State decides to impose hysterectomies on young women with mental disability, what is our response?

We need to talk about these things openly, which is why I so welcomed Margarita With a Straw. We need to think about all that we say and feel and believe and we need to exchange views openly and most of all, we need to hear voices from the people we call disabled.

This piece was originally published on Sexuality and Disability.