Wednesday, June 20, 2018

Politics and fiction

The title for this post should probably be "Why I love fiction set in a political context."

I just put down Seema Goswami's 'Race Course Road.' I wanted to read it when she first posted about it, finally bought it last month, and picked it up during a sleepless spell the night before last, only to read it compulsively and finish it last night.

I read it playing the usual game one does with such novels, especially those set in India, asking, 'Now who is this supposed to be?' and 'Who is this character based on?' It is easy enough to guess but you realise that the answers do not make a difference to the simple but absorbing story, which is truly fiction. All the characters come alive, seem realistic, and you really want to know what is going to happen to all of them. It was just a really good storybook and I recommend it for weekend reading, holiday reading and definitely, reading on a really long flight. I mean, you can read it whenever you want, but best to read it when you can indulge without interruption--I found it hard to put down.

Seema Goswami's long years as a reporter show in all kinds of detailed references to the politics of the last twenty years, enriching the book.

I loved that the book tells a story, you can see Goswami's view on various issues (especially if you read her columns), but there is no hidden message. It is a clever book but it does not sit on a pedestal, pretending to dispense wisdom to lesser mortals--a problem I have with a great deal of contemporary Indian writing. People try too hard to impress and overload their stories with everything they know, layers of messages and too much else besides. In this book, the author brings a great deal of knowledge to her storytelling but the book is not about how brilliant she is--it is a book about the people whose story she is telling us. That has become a rare quality in this pretentious world we inhabit.

The only quibble I have with the book is the extremely tiny and light print--not the author's fault. But if you read it on a Kindle, and if the publishers produce an easy-to-read edition, I would say this is one of the most fun books I have read in the last year.

***

As I read 'Race Course Road,' I realised that I am very easily drawn into fiction--in any medium--that is set in a political context. I have binge watched 'Madam Secretary' earlier this year. I have 'Yes Minister' and 'Yes PM' bookmarked. I loved the political parts of the Jeffrey Archer's Clifton Chronicles (which I really enjoyed on the whole!). This context is what I really enjoy about Nayantara Sahgal's writing.

I want to acknowledge that a lot of other novels also merit the label 'political'. So maybe in the Indian context, what I mean is really a 'Lutyens' novel, to borrow a term from Goswami? Something that fictionalises Parliament, parties, elections and so on.

In real life, I am bored by television news discussions about politics, and despite wearing the political scientist tag on my bio, I tune out of everyday whosaidwhattowhom politics--the kind people seem to be enthralled by and for the first time in my life, I couldn't identify most political worthies in a line-up, even with a list of names in hand, without wild guesses. The politics of parties and netas really bores me. There, I said it.

Happily, fiction of any sort uses filters. Boring things get ignored and better still, in the best work, as much is left unsaid as is recorded. Unfortunately, this is not true in the real world. Politicians and even more, political experts, appear to be the most verbose creatures on earth. Where novels and television series cut to the chase, in seminars and interviews, people are hard to stop.

Truth, the saying goes, is stranger than fiction. The real world of politics has long crossed from 'strange' into bizarre, grotesque and evil. So in work like 'Race Course Road' and 'When the Moon Shines by Day' (Nayantara Sahgal), even the worst things people do, still seem not as bad as reality.

In the real world, there are unmanageable consequences for incompetence and evil, which are contained in fiction. You know, that as horrendous as someone's actions or acts of omission are, their consequences will be limited to the page and their comeuppance is imminent before the end of the novel. I don't need to feel anxious about that world. On American television fiction, there is a consistent triumph of idealism that is quite comforting. Take the President in 'The West Wing': there were moments in which one really wanted to vote for him. Moments, but they were there.

Fiction offers idealists like me a larger selection of good people. I know, I know, that's a horribly cynical thing for me to write, unworthy of a Piscean. But it's true. Who on a television newscast makes you feel as hopeful as a fictional character, even for five minutes?

Reading 'Race Course Road' made me want to read another novel like this immediately. I hope the author is working on one!







Monday, June 18, 2018

Ode to my laptop


Ode to my laptop (away for repairs)

On most days
you sit there alone
soaking in the hot glare of the western sun,
the yellow on the walls
magnifying its intense warmth.

I have forgotten to draw the curtains.
I have forgotten to cover you
--with the yellow napkin that is your comforter.
I appear to have forgotten you.

I am stuck at my other desk,
trapped in correspondence mode without end
and in an endless waiting for this and that.
I sit there,
anticipating the next disturbance,
faced with long task lists,
stuck till someone else responds,
yet pottering to fill the time between now
and when I can finish them.

I do forget about you.
I forget to break away and read the articles I store in your memory.
I forget to sit with you and watch words flow from my fingers
on to your screen.
And when I remember, I chafe that I am stuck.
I cannot always return to you
the minute I remember.

Sometimes I am mid-task;
sometimes I am a prisoner of the schedule I made.

I forget about you
and that is to forget about me.
That I am more than a generator of email messages
and tweets, and drafts crafted to make people work.
That I want to work with words and images
and not just to arrange events or market programmes
but just because it gives me pleasure.

Pleasure.
I forget you and it is as if I have forgotten pleasure.
Photoshopping flower-photos into cards.
Watching slide-shows of holidays past.
Writing blogposts no one will read.
And reading to learn and reflect and write,
in order to remember that once
I learnt to learn, and once I used to teach.

You belong mostly to my other life.
And when I forget you,
I forget that I owe it to myself
to keep that part of me alive.

But now you have been out for repair
a whole week
and I think,
if you were there, I would have written this,
I would have finished reading that,
and my morning labours with you
would have given meaning to my day.

With you, waiting on that desk,
I have the option of other lives.

As ever, when you are gone,
I promise I will never forget or neglect you again.
Never mind whether I will keep that promise.
Just come back today.

June 18, 2018



Summer holiday Sundays

After many years of working long weekdays and all weekend, a bad spell of insomnia and fatigue last year forced me to change my ways. With great difficulty, I began to resist working on weekends. I go to bed earlier and sleep as normally as I can, approximating 6-8 hours on a good night. And not working now means stepping away from all devices, or rather, from work applications on all devices, including social networks.

The first few weekends were hard, not because I longed to go to work--it had been years since I felt motivated to keep working--but because the guilt was overwhelming. How could I possibly be idling? What do I do with the day if I am not working? I had forgotten that I used to have hobbies.

For all those contemplating this transition, I want to tell you that it gets easier. I now start shutting down work on Saturday morning; which means I do what needs to be done and don't initiate anything new. I do some of this resentfully--no one else around me is working even when I do, so why should I? I am not recovered enough from burnout or fatigue for time-off not to be tinged with negativity. But it is just getting easier to let go. To shore up the barrier and say, no, I will not respond to this in a hurry now. I tell myself when an email calls for an instant reply: I will hurry but they will not read it till Monday anyway, so why bother? I see a frantic message from someone who makes me wait all the time, and go, ha ha, now it's your turn, I will do this on Wednesday. And so Saturday afternoons are once more becoming a time of temptations: shopping, coffee with my cousins, colouring books, chatting with my sister.

And Sunday. What can I tell you about my summer holiday Sundays? I set aside the mobile phone I use for work calls. I charge the other one where I watch Amazon Prime and the iPad where I have Netflix. I have a pile of books by my side. I have a notebook and some pens. But I make no plans and have no expectation that I will do this or that.

I am slowly learning, "just for today" as the meditations go, to ignore the obstacle course I have set up everyday--I have to be up by this time, get so much done by that, heat breakfast by this, eat breakfast by that... it's a high-pressure race that the clock wins every time. I experience time like a series of concentric walls that close in around me. At this point, this leaves my body and spirit wrecked everyday. The clock is fastest, I am running hard and quite fast behind it but most people around me appear to be moving like snails slowing me down as I reach out for things they are supposed to be passing me. My war with the clock exacerbates my war with the world around me.

But not on Sunday. On Sunday, I retreat to the pace of a 16 RPM record. I have learnt to slow down quite a bit. I spend a lot of the day flat and virtually all of the day alone.

Let's talk about the 'alone' part. For six days a week, I am forced to interact with people and perform a variety of roles: founder of NGO, political scientist, fake expert on this and that, cheerer of the miserable, encourager of the fearful, dutiful relative, and so on. On Sunday, I am practising the only one that can get me through this lifetime: me.

On Sunday, I spend most of the day by myself, interacting quietly with those in the house and nothing more. I hope to god no one wants to meet for anything that day. I drag myself to visits. I even postpone urgent grocery shopping so I will not have to interact with people on the way and at that end. Sunday is reserved for indulging my introversion. Just one day in the week. I don't want to talk to anyone. Go away. Let me pretend I live in complete isolation. Don't remind me of how much my life irritates me every other day.

That solitude is enough to endow Sunday with a magical quality.

I am remembering all the things I like to do apart from work, and now, one day is not enough for them. I think I can once more list 'hobbies': reading, music, watching fun stuff here and there (of course, nothing highly recommended), drawing and colouring. I have an incomplete craft project sitting in a bag. And dozing. I do a lot of dozing. I yearn to blog and work with my photos but that would mean coming to a computer so I resist and promise to steal more weekday time from work over the months ahead. I want to return to letter-writing by hand and use all that beautiful paper I keep buying.

And I want to tell you, there is a category of work reading I do on Sunday that my week life gives me no time for. I remember that precious part of myself.

Yesterday, it occurred to me that I have reconstructed my school summer holidays in my Sunday non-routine. Sunday is beginning to feel lazy and quiet. I look forward to it. My books invite me and I curl up with them. I spread everything out and do what I feel like.

When I taught in the US, Christmas week was like this. When the Fall term ended, I would pull out paints and paper and spread out and never put anything away. I would listen to audio-books and have the television on, and just draw and paint for about a week. In blissful solitude as everyone else partied. That too is a part of my Sundays now.

The bad thing about Sundays is that they culminate in Monday. Unlike some of my friends, I do not look forward to Mondays. Monday mornings, such as this one, bring the dread of a time-bound obstacle course. I have only till about 9 to myself. After that, my time, energy and attention are fair game. Anyone is likely to show up and ask for anything. I will not get my life back till Saturday.

This is where the summer holiday resemblance stops. One finished the summer in anticipation of the new school year: Who will be in my class? Who will be my class teacher? Who will sit next to me? And of course, in Bombay, it was time to by the next size of raincoat and gumboots (or rain shoes) and if your parents felt indulgent, a new pencil box or water-bottle... Monday brings no such temptations but a return to anxiety and more work than this healthy new life-style will allow me to finish. I close my eyes and sigh and think, if this is how I feel, I need a change of life. And I put that on the work-list to deepen my dread of Monday.

But never mind, if I can close my eyes and get through this day, I can go to bed early and dream of another life. And inshallah, time flies, so Saturday afternoon will come around soon enough. And another summer holiday Sunday.















Wednesday, May 16, 2018

How to write an election manifesto voters care about



AN OPEN LETTER TO THE WRITERS OF ELECTION MANIFESTOS
(This was written a couple of weeks ago, as the Karnataka manifestos were being written. Given that we are nowadays always preparing for an election, I think it is still relevant so I am posting it here.)
Since 2014 it seems we are hurtling from one election campaign, and the surge in the production of election manifestos has created proportionate debris of broken promises in our political landscape. Brutal news of sexual violence, distress suicides and disasters punctuate the calendar but we remain preoccupied with elections. While political parties make a hundred clich├ęd promises, what are people worrying about? What do they want? I have compiled a list which I trust will be useful.
Violence is on everyone’s mind, given recent headlines. But people are not just thinking about sexual assault and child rape, they are also expressing concern over domestic violence, sexual harassment in public spaces including stalking and workplace sexual violence. Even marital rape, which the government considers integral to Indian culture, is discussed. There is concern about how deeply ingrained habits of violence have become and also concern about whether the police and judiciary are performing their duties adequately. Not just feminists, but everyone understands that the government of the day has an important hand in creating impunity for gender-based violence. The political class responds with protectionism (how to keep ‘our’ women safe, and politicians make statements that only explain why we have a problem); the promise of more money on schemes that have not been thought through (look at the Nirbhaya Fund) or the threat of severe punishment, regardless of the long-standing argument that it is not severity but certainty that is a deterrent. Appearing to act is what seems to matter.
Violence expresses discrimination and that voters are able to make the link is evident from the parodies of the ‘Beti Bachao’ scheme that have appeared after the Kathua and Unnao cases. Discrimination is pervasive, sidelining or excluding people on the basis of caste, community and gender, among other criteria.
Indian voters have always been able to tell when you court a community for their votes, though they might play along. The more important questions today have to do with the endless list of everyday challenges they face: water, power, pollution (Bengaluru lakes are a horrifying visual illustration), and also the consequences of a shoddy education, that leaves people with great hope but little useful competence. Manifestos promise numbers (so many schools or technical training centres) but people understand that it is the quality of what is delivered that will help them get ahead.
Livelihoods are a critical concern for Indians, unrelated to official job figures. The government’s development vision has threatened traditional livelihoods for countless Indians. Compulsory land acquisition for industrial plants; resource extraction such as mining projects; or pollutants or industrial refuse destroying marine life have made survival a challenge for those who have hitherto been able to sustain themselves and their families. In some places, where women played vital roles in their sector (the processing of fish or cash crops, or marketing), new livelihood projects do not take this into account and end up side-lining them.
The alienation of land is a survival and identity issue. For communities that live by the land, the land represents wealth and security that are always greater than the rupee-value compensation on offer. Decisions to acquire land must be taken in consultation and concert with those settled in an area, negotiating not just price but the project itself. Research tells us that those who are displaced once, even with a monetary settlement, end up being displaced over and over again, and they slip further into poverty with each displacement. With displacement, come a host of other challenges, including trafficking and sexual exploitation. As we settle into an era of permanent election campaigning, the people of India need to see that you are aware of this. Development cannot be the source of poverty and misery; if it is, it is obviously not development at all.
There is also disquiet among those who are working in the new India’s new factories—the old-style ones that produce goods and the new-style ones that produce services. We are making deals with investors that trade off not just people’s land and traditional livelihood but also workers’ rights. The right to unionise, negotiate better work conditions and bargain for better wages is violated in most of the new industrial and export zones. While some of the new companies have offered young Indians a quick professional start and good wages, these come with challenges: infrastructure follows the companies so sometimes access roads are unlit and unsafe; odd hours do not come with safe commutes; the many security restrictions and work regulations create a stifling atmosphere for those at the bottom of the pyramid; and unionisation—or any political activity—is not encouraged. In the meanwhile, the old companies are still lagging behind in the old ways—wage discrimination, inadequate wages, work conditions including infrastructure like toilets and safety, for instance.
Climate change and unsustainable practices are creating a new generation of challenges. So far, we have heard very few politicians take cognizance of these. Water shortages are immediate. We proactively ruin the environment and public health in the name of development. Drought has led to greater farm debt and farmer suicide, but the clamour is for a larger share of existing resources. We do not see election manifestos or speeches that reflect on a review of how we use or reuse water. Climate change is real—and with rising temperatures and uncertain monsoons we are living with it—but few politicians speak about the search for alternative energies or finding more sustainable practices. Those who do are seen as fringe voices or spoilers of the bonanza we are told is on its way.
Furthermore, we hear very little in election manifestos on creating resilience. This is an area in which the social sector has done pioneering work that government can help scale across the country. We still hear politicians speak about disasters as punishment, even at a time when we recognise that vulnerability causes disasters, and not nature itself. What will your government do to reduce vulnerability—better development choices, for one—and create resilience—access to information technologies, for instance? We want to hear election manifestos reflect this changed thinking in the practitioner community. In fact, we want those who draft the manifestos to take this opportunity to reach out to civil society and learn.
The ideological journeys of our economic and social policies are excluding more people everyday and shrinking our democratic space. In search of a theoretical maximum good, we lose sight both of the immediate harm done to communities and resources, as well as the fact that development is supposed to take place within an environment where human rights and democratic principles are adhered to. In this endless election season, we would like to hear a reaffirmation of this idea. We want to hear politicians tell us how committed they are to participatory planning and to co-written development visions that also promote our rights and participation. Nobody wants a divisive politics, because nobody’s life is improved by it. We want politicians to step into the breach of our disagreements and facilitate reconciliations. We want them to be strong and idealistic enough to view our differences as aberrations and take the risk of resolving conflict rather than benefiting from it in the short and intermediate term.   
Enough already, of the formulaic election manifesto which starts with a vacuous and inexact vision statement and ends with a laundry list (so many scholarships, so many bicycles, so many new women constables)! We want you to use these once-irrelevant documents to tell us how you see the world, identify its most pressing problems of the day and how you are going to fix them. Take strong and clear positions on the issues that matter to us, and let us decide which of them matter most to us when we vote. We, the voters of India, are smart enough to understand bet-hedging and just-in-case thinking. Tell us the truth, and we may even reward you for it.
What we would like to see in an election manifesto
A glimpse into your worldview and values
·       Express zero tolerance for misogyny. Do not continue to reward those who speak in terms that put down women and minorities; if they have no respect for people, they cannot serve. Rape culture begins with misogynistic speech and behaviour; we want to see you nip it in the bud;
·       Do not dismiss gender and sexual violence charges as minor offences. There should be a political price to pay, both rape accused and to those who go out on rallies in their support;
·       Reject interpersonal violence as a political language. Violence, including sexual violence, that targets members of one community with a view to intimidating or eliminating them is genocidal behaviour on a pilot scale. Tell us where you stand;
·       Take a clear position on caste discrimination. Dalit politics is not just about the solidification of a vote-bank but the continuing reality of our everyday attitudes towards other citizens.  
·       Take a strong position against caste atrocities and communal violence;
·       Acknowledge the reality of climate change and its consequences for our survival.
Your approach to development
·       Do you commit to consultative, consensual, participatory and transparent decision-making, especially on land and resource issues?
·       Do you see a relationship between human rights and development and how does this affect the choices you will make?
·       How will you improve the life-chances of the very marginal? Tell us what you will do that will substantively alter the quality of their education and remove the ceiling to their aspirations.
·       What are your plans for reducing the vulnerability of communities to climate change and other disasters and how are you going to help communities achieve resilience?  
·       Let us see what you have thought about sustainable technologies in which you will invest, how you will improve agricultural and industrial practices and how you will approach conservation.
Your election manifesto is a medium to communicate with us on matters we care about; use it meaningfully. 

Monday, February 19, 2018

Living with Parkinson's Disease: An Agenda for Action

LIVING WITH PARKINSON’S DISEASE

This was written by his caregiver in 2004 for the National Conference on Parkinson’s Disease, Challenges and Hopes, held in Bangalore, on September 30, 2004.
It was read out at Siddharth’s funeral on 27-01-2018. He died on 25-01-2018.

***

“I start with an explanation: I have chosen a verse style of speaking only because it allows me to pack more content into fewer words. The rhyming is not meant to be frivolous. Though my tone might sound like I am slowly chugging along, I will finish within my allotted ten minutes. I hope that in giving my personal experience, I connect with the general opinion on " Human and Social Consequences of Parkinson's Disease " which is my high-sounding topic.”

I begin now to relate a tale
of life centred round Parkinson's disease.
I will speak from the angle of the family,
words to put you at considerable ease.
I will give a first-hand account
as a care-giver or care-taker.
I will try to give courage to the patient
and appeal to the policy-maker.

My husband was diagnosed with Parkinson's
with a stiff shoulder at forty-two.
Though it was a far-fetched word to us,
it didn't hit us like a bolt from the blue.
With Dr S, we took it with courage
as something that comes free with life,
no point in cursing our bad luck
and heaping up woes and strife.

The first ten years were really not bad;
just some tablets, the expenses were nominal.
A six-monthly visit to the doctor,
the check-ups were nothing phenomenal.
There was a slow yet steady decline,
but we kept our enthusiasm burning.
Soon the children could not have their father
spend time on their games or their learning.

The next six years were with higher doses,
the dyskinesia and the freezing got terrible.
We got used to the fitful sleeping
but the nightmares were quite horrible.
Except for close family gatherings
he couldn't mix much with others.
He found himself isolated in a group;
going to concerts and movies became bothers.

Dressing up took two hours,
talking was a whisper at best.
He fell on the road several times when with help
from the kindest strangers we were blessed.
With having to live life between offs and ons
and with reduced body control,
he regressed in his daily activity,
being forced to take a secondary role.

The immediate family learnt to become slow
stepped off the rat race, didn't get worried.
We decided to let him set the pace,
he got more unable if he was hurried.
His jobs became more difficult to do,
he was tending to curl into a shell,
but he didn't give in to his helplessness,
his brave attitude served him well.

It's important to be able to call for help
but cell-phone buttons are too close-spaced to handle.
We've made patent-worthy innovations—
like an elastic strap fixed to his sandal;
a cow-bell hanging from the bed-post;
a cycle-horn on the toilet rack
for when his six foot one-inch frame bent double
and he could not straighten his back.

A sharp mind, engineering at IIT
and management at MIT's Sloan,
caught up in an unresponsive body
that his brain could not govern on its own.
While his classmates were heading big companies,
he needed a crutch, a box of pills—
twenty-one tablets, eleven times a day
and mounting pharmacy bills.

His assets, three things that he did best
were thinking and speaking and writing.
Mercifully his thinking was left intact,
but his speech was poor, so was typing.
You can imagine the frustration when
you have an idea you want to spread.
But you only mumble and no one waits to hear
and your scrawl, it just can’t be read.

For his mother to see her older son thus,
her darling from the day he was born,
was a struggle, she couldn't stand the pain,
she cried, her heart was torn.
Our eighty-year-old aunt was so concerned,
to let him carry his suitcase she refused.
Most people don't know how to relate to him,
the complexity of Parkinson's leaves them confused.

I, as his spouse, had no choice
between work and home I had to run.
Tests and visits to the doctors
and errands that had to be done.
Physical and right-brain exercises were prescribed
and learnt, but the flesh was unwilling.
When the spirit was weak, how could I nag him
to do as the speech-therapist was bidding?

To minimize compromising our children's needs,
we made a smooth and copable family pact.
Our two sons and we shared responsibilities
and we did our chores matter of fact.
I became handyman and driver
paid bills, bought railway tickets.
He managed to concentrate on his job,
leisure was computer games and TV cricket.

He had his dear brother for moral support
and his surgery expenses to meet.
His sons and his help gave him confidence
the risks of the new procedure to beat.
The DBS gave him excellent relief.
Doctors U, A and D did the trick
And now at fifty-eight he's looking like new
A new life ahead, new options to pick.

Only now when he's abroad on holiday
and responsibilities I have not,
I realize my involvement as a carer,
in the Parkinson's cage I've got caught.
Every day after work, there was no question,
to be of help I had to head home.
This past month I've found a new freedom
I go visiting, I lie back, I roam.

From the association it would be nice to provide:
a list of trained attendants in case of need;
and for care-givers to update themselves,
Parkinson's literature to read;
Knowledgeable mentors who could be available
at a help-line during the day,
with a view to provide companionship
or clear doubts that come their way.

Government involvement through building rules
and road crossing and traffic laws:
Ban uneven surfaces and transformers
and objects that jut out like claws;
While they struggle to be good citizens,
give tax relief and disability deduction.
Firms, sponsor the surgery, cut the implant device cost
help them contribute to economic production.

Spreading awareness to the public
so that when they are out somebody knows
that they can only move if there's open space,
best to ignore them, stay away from their toes.
Encourage more hospitals to have staff,
trained specially in movement disorders,
so that patients don't have to shuffle far and wide
to seek expert medical orders.

Let doctors not have to trial and err
to tailor the most suited dose.
Let pharmaceutical research make it a priority
let better drugs, without offs be close.
Let our efforts be directed in a concerted way
in the context of our local needs.
If we can boast of satellites and defence
why lag in these urgent deeds?

From others' experiences I have collected,
the main culprit is ignorance and fear—
fear of how to be a bread-winner;
fear of inadequacy to near and dear;
fear that the disease eats you up from within;
fear the next step you take you might fall.
These fears have to be individually confronted
and addressed by us one and all.

The thing that helps us in our hard times
is that we don't ferment our fears;
a "we are doing our best " attitude of confidence
no over-protection, no tears.
As Dr. V advised be positive,
to the negative we must be immune.
Maybe he hears a distant drummer;
let him dance to a different tune.

Parkinson's shows strange opposites,
sometimes excessive, sometimes zero movement.
No need to feel embarrassed, it's all part of life,
there has been much improvement.
Bless the doctors, the nurses, NIMHANS,
the people, both stranger and friend,
Who stand by us as the disease degenerates
to an unknown and therefore, fearsome end.

But take heart, dear Parkinson's patients,
let's accept it in a natural way.
Each of us has to get something
either yesterday, tomorrow or today.
If you take these things in your stride,
even though a stride is difficult for you                        ,
we are there to share and lighten your load,
we will not abandon you.

And all of you at this conference,
who were kind to listen to my brief,
let's give courage to the Parkinson's patient
and do away with all laments of grief.
Let's shower them with respect and affection
and understanding, and allay their fear,
since we've already got the better of Parkinson's
and soon we hope to hear of a cure.

THANK YOU,

A care-giver.

******************


This account was written by someone who took care of a person with Parkinson's disease. The family lived with the disease from its onset, as it claimed their loved one, stage by stage. Through the years, they showed love, patience, courage, resourcefulness and creativity. There has been immense grace in how they have coped, and our admiration from afar has turned to awe as we have read this account that put words to what we witnessed without understanding. 

When I first listened to this account at his funeral, even through the fog of intense grief, beyond the parts that broke my heart to hear, its very practical suggestions held out to me that 'something we can do' which we had not known how to seek before. I want to highlight those parts here.

******

What could professional associations do to support Parkinson's patients and caregivers? 
  • They can provide a list of trained attendants in case of need;
  • They can prepare and share updates on the disease, care and treatments available so caregivers can update their knowledge;
  • They can identify mentors who would be available at a daytime helpline. They might serve as counsellors or just support caregivers through listening.
What could hospitals do?
  • Hire more staff trained to care for patients with movement disorders;.
  • Minimise the running around for Parkinson's and other patients in search of the right doctors and treatment options. 
What could pharmaceutical companies do?
  • Create medicines with calibrated dosage so that doctors do not have to experiment with their prescriptions, causing patients distress.
What should the government do? 
  • Drafting and implementing disability-friendly building rules, road crossing and traffic laws;
  • Taking care of uneven surfaces, and ill-positioned transformers, loose wires and "objects that jut out like claws;
  • Offering tax reliefs and deductions to persons with disability (including Parkinson's patients who might need aids like wheelchairs). 
What can corporates do, whether as part of their CSR or HR policies?
  • Sponsor surgery (like Deep Brain Stimulation or DBS) for Parkinson's patients that improves the quality of their life;
  • Cut or subsidise the implant device cost;
  • Find ways to help patients find employment or to work productively. This may mean more disability-friendly spaces, or flexi-routines, or setting aside tasks that are easy for them to perform;
  • Innovate disability-friendly designs for everyday products, like cell-phones with large keys (mentioned in the above account).
There is also a case to be made for letting caregivers lead or at least collaborate on the design and production of support equipment. In this account, several home-made innovations are mentioned. Every caregiver has probably created makeshift solutions that could be rationalised and replicated affordably, or even shared through support networks. This is also a project for a large-hearted corporate in the health-care sector. Going beyond doctors to brainstorm for R&D would reveal all sorts of creative solutions. 

What about the rest of us (who just look on helplessly)? 
  • Awareness can just mean, stepping out of their way, giving them room to move, ignoring them (so they are not pressured or rushed, or self-conscious).
  • The kindness of strangers makes a lot of difference--whether helping when they fall or moving things out of their way. 
The writer underscores how people feel when Parkinson's disease enters their lives. For the patient, it is 'a sharp mind... caught up in an unresponsive body.' For them and their families, ignorance and fear govern their reactions. Support--from doctors, from other caregivers and from society--to reassure and stand with patients and their families is very important. So is acceptance: "Maybe he hears a distant drummer; let him dance to a different tune."

As she writes: 

"Let our efforts be directed in a concerted way
in the context of our local needs.
If we can boast of satellites and defence
why lag in these urgent deeds?"

It is so easy for us to look away, to give up and to pretend that there is nothing we can do. And yet, there is so much we can push for. I am sharing this on my blog as a way for more people to learn, by accessing this window into an experience most of us do not think about until it becomes our own. 

Another such window to help understand is this film about my aunt, Leela, who had the same disease.



Please help me get this out by sharing. Also, if you have experiences or solutions to share, do leave me a link or an account in the comment box. 

Thank you for your attention and help! 

Saturday, January 13, 2018

Too many words in the world?

I came to the blog this morning and realised that I had not been here since December 21st. Before that, while aspiring to blog everyday, I had managed to blog at least a couple of times a week for a while.

December-January are social months in Chennai so the words that are in the head get spent. Also, right after the 16 Days Campaign, one retires into a cave, trying to recover. The year began with resolutions relating to physical self-care and that puts other things on a back-burner--why is it an either/or though? Perhaps I just don't balance things well. And then grief. Grief, which directed all my words to phone calls and texts to other bereaved family members. All my reasons.

But as I look at Twitter and Facebook this smoggy morning, I also wonder: Is it that there are too many words in the world today? All of us write, even when we have nothing to say, and the words are littered everywhere, across every medium. What is left for me to say? So I am reading--a better use of my time, I suspect.

And in the meanwhile, I am also reflecting on the importance of some kinds of silence. A little more restraint in commentary. A little better resistance of the urge to opine. A little more reflective silence within oneself. A little more listening to those who rarely spill words. A little more learning.