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 clichéd 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.

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! 

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. 

#nosgbv Dignity and violence

Yesterday, a short video made its public appearance. It ostensibly showed the late Tamil Nadu Chief Minister, J Jayalalithaa, as she lay in her hospital bed,  sipping juice and watching TV. Her clothes were in disarray, as ours get when we are relaxing, thinking we are alone.

This suggests that the video was shot without her knowledge, and shot by someone who did not care about her sense of dignity or her privacy. It was shot without her consent.

The video was meant,  we are told,  to convince voters that she was well taken care of and to tip the balance in favor of the Shashikala faction. In fact, it tells us that these were people who did not and do not care about JJ and what she would want. She was and is an instrument for them. But that is a different discussion.

Suppose this were not a hospitalized leader but a young woman changing clothes or a teenager in the shower. What would we call this video? There are penalties in the law for shooting photos and videos without consent. It is a violation of rights,  privacy and the law. A crime.

The law uses old fashioned language like 'outraging modesty'  and we are wont to smile. But what else is a video like this and who is going to file an FIR on behalf of a leader who fiercely guarded her privacy and public persona?

Last night, CNN India played the video over and over. What is the penalty for that?

We will not ask. We use and lose the leaders we claim to idolize. Like we do all other human beings.

If this is the fate of someone who was so powerful, what can the truly powerless expect? How meaningless are the memes that dominated 2017 for the elite? Consent? #metoo?

Where do we begin to change thinking about respecting each other, about rights, about borders, about privacy?