Monday, August 31, 2009

Shekhar Seshadri Does Dehradun

Dr Shekhar Seshadri is a child psychiatrist and a very dear man. Here he is in his Jesus Christ avatar, speaking to the multitudes. We got him to come to Dehradun after a gap of eight years, and the pursuit was half the fun.

We were relentless because we knew what he would bring: insight, analysis, creativity, imagination and genuine kindness and compassion.

His topic was Sexuality and the Lives of People with Intellectual Impairment and almost from the moment we began issuing invitations we knew it was going to be an unusual evening. A lecture on a Saturday night isn't everyone's idea of fun. But we got so many affirmative responses that  we had to shift the venue at the last minute from the 150 seater hall we had originally booked to one with a capacity of 400. And we almost filled it. Busloads of teachers came from most of the other disability organisations in the city and parents came from everywhere.  It was a poignant reflection of the need people have to speak openly about sexuality, especially in the context of intellectual disability.

It's a need because almost no one is doing it. And certainly no one is doing it the way Shekhar Seshadri would like to see it done: from a rights-based perspective and as part of a normal, positive, healthy life. 

Sexuality, in his view, is far more than penetrative intercourse between a married, heterosexual couple for the purpose of creating babies. It is a way of being in the world, a part of each person's identity and a vital and essential aspect of each person's life. 

But for most of the parents and many of the staff in attendance that evening, sexuality among people with mental handicaps is a problem, an issue, an uncomfortable fact of life that just won't go away. Nobody is really comfortable talking about it, but for most people, it's even MORE uncomfortable not to talk. It's too worrying, it's too embarrassing. The idea of a man of 23 masturbating in the living room or a girl of 15  continuously fondling herself is unbearable. So even though talking is hard, it's better than silence.

Shekhar wishes people would talk more. But not just about sexuality. About anything. One of the most valuable things I got from his presentation was this need for TALKING. As he pointed out, most adults never talk with their children - whether they have disabilities or not - about anything significant. Why should sex be any different?

Shekhar had lots to say about different aspects of sexuality and much practical advice on how to approach problem areas and behaviour issues. But the main thing I learned was to just talk. Get to know your kids while they are small. Talk to them about their feelings,  their dreams, their fears. Learn what makes them tick and help them to see that you are there for them - the friend and guide they can trust when things get confusing and strange. Because that's the relationship you'll need to have when they start learning about themselves as sexual beings (at 4, at 11, at 16 and right on up through their entire lives) and yes, it will happen whether they have a disability or not.

Talk to them. Listen to them. Be there for them. Let them know there isn’t a thing they can’t ask you about, not one thing you won’t want to discuss with them. That’s what will make them comfortable in their own skins. That’s what will make them see sexuality as a gift and not a curse. 

Talk to them. It’s magic.


Monday, August 24, 2009

An Excellent Adventure

It doesn't take much to make an ordinary day exciting. At least when Nutan is around.

Last night my adorable sister-in-law informed me that I would be taking everyone out the next day: Mummy, Dad, her daughter Nisha and herself. We would start with a visit to a bookstore, have coffee, buy some things for the house and then go out for lunch.

Obediently, I called in to say I was taking the day off and we all piled into the car at 10:30 in the morning. It had been a long time since I have had a holiday. This month in particular has been back-to-back events, with weekends all over-scheduled and evenings packed as well. So it was strange and a bit unsettling to linger over breakfast ("Another cup of coffee, Dad?") and not even glance at my email or try to return phone calls.

Unsettling, but GREAT. "Are you taking a holiday in your head as well as actually, Jo Auntie?" Nisha asked. Good point. It's all too easy to be out of the office but still at work in spirit, especially when you love your job. Sometimes it's a physical effort to tear yourself away and be somewhere else.

Today I managed it. I guess it was partly the elderlies and their calm acceptance of being ordered about by us young ones. Mummy didn't really want to go and Dad would have been happier staying at home too, but Nutan ("God's Elder Sister) pays no attention to small details like reluctance or back pain or inertia. She knows people sometimes need to be pushed and the force of her conviction got us all out the door.

It was so good to begin in a bookstore. The wonders of the world were all there on display, and there was something for everyone. Dad found a Toni Morrison novel, Mummy spotted Jaswant Singh's tome on Jinnah and the India - Pakistan partition (the one which got him thrown out of the BJP), Nutan got a book on diabetes and nutrition, Nisha grabbed one on bird-watching for a friend, and me - I found a fairy tale.

Over coffee in the adjacent cafe, we shared what we had discovered with each other and mapped out the rest of the day: a vacuum cleaner to be purchased for our house
(Nutan's gift), a fridge for Vikram (an inspired plan we all wanted to be part of, but which Nutan insisted on doing by herself) an assortment of gifts Nisha needed to get for her brothers and cousins and friends and finally, lunch.

The Vacuum Cleaner! That was for us, inspired by our helper's 10-day sick leave, during which I swept and washed the floors myself and finally realized how arduous Sheila's work really is.

The Fridge! That was for Vikram, our live-in Man Friday and Helper Extraordinaire, who very infrequently takes cold water from our house up to his flat and who has to eat his ice cream before dinner because otherwise it would melt.

And finally, Lunch. Lunch in a place called Chhaya. Chhaya means Shade, and here in India, that's a word and a concept and an experience we all cherish. Sunshine is for the Western world. We like rain. We like shade. We look for the cool spots, the hidden sanctuaries where we can escape from the heat and relax with a drink and a fan and a spot OUT OF the sun.

Chhaya is a women's cooperative, a restaurant as well as a gift shop for clothes and quilts and jams and baked goods. It's a quiet haven, out of the city and away from the traffic and the noise and the craziness.

We ordered sandwiches and soup and quiche and French Fries and pie. Some of it was good, some of it was great and some of it was just so so. It didn't matter.

The last photo of the day was this one. Three generations: The 92 year old, gazing calmly into the future, not worried either by the past or the present - just there, herself, brave, confident and ready. The young one, looking straight into now, eager and expectant and beautiful. And the one in the middle, delighting in the glory of youth while secure in the wealth of age.

A good day.

Friday, August 21, 2009

The Last Frontier

Do people with disability have sex lives? Do people with intellectual disabilities have the right to reproduce and raise their own babies? What kind of sex education do children with disability need?

Of all the issues confronting people with disability and those who work with them, none is as highly charged as the issue of sexuality. A case which hit the newspapers a few weeks ago brought many of the most compelling strands of this complex tapestry together at a national level and it took the Supreme Court to finally settle one crucial aspect.

The case involved a young woman with a mental handicap. She lived in a government run institution as a ward of the state and she had been raped repeatedly by two guards working there. Finally, at the age of 19, she became pregnant. The State, discovering her condition some 18 weeks into the pregnancy, determined that she should have an abortion. The young woman, however, insisted that she wanted to keep the child.

Her “guardian” (the State) took the matter to court and it was decided that she should be compelled to have the abortion. An advocate for the woman filed an appeal against the judgment in the Supreme Court where, given the urgency of the issue (abortion is illegal after 20 weeks) a speedy verdict was handed down: any woman, even one with a mental handicap, has the right to bear a child and cannot be compelled to abort it against her will.

Many people weighed in on this case during the debate and while many revealing things were said, much was also ignored, brushed under the carpet or simply not analysed. Let’s look at some of them:

A disabled woman was raped (by two men supposedly there to protect her). People with mental handicaps are statistically more likely to be sexually abused than almost any other group. This is true for a number of reasons. They are often accustomed to being both dependent on adults for many of their basic personal needs and submissive in their response to those adults, particularly those seen as authority figures.

People with developmental disabilities may also lack the social skills required to assess a potentially dangerous situation and the judgment and maturity to get out of it or raise an alarm. And finally, they are exposed to many more “caregivers” than typically developing people. The more people one is intimately involved with, the higher the chance that one of them will be an exploiter.

The woman became pregnant. People with developmental disability are often assumed to be infertile. While some disabilities do have an associated infertility component (only around 50% of women with Down Syndrome, for example, are fertile), most otherwise healthy adults have the same chance of being able to reproduce as anyone.

Her pregnancy was ordered to be terminated by the High Court in her state, in spite of her repeated insistence that she wanted to have the baby. Here we get to the heart of many issues. Is a person with an intellectual disability capable of making such a decision? Is intellectual capacity a requirement for parenthood? What about the baby’s right to life? Is the state ever justified in forcing a person to undergo an invasive procedure, particularly one which many believe to be murder?

Many people who agreed with the Supreme Court’s decision nonetheless felt strongly that the baby would still have to be taken away from the mother and reared by the State. It’s important to look carefully at the biases and assumptions at work here.

Are we so sure that a woman with a cognitive disability is incapable of taking care of her own child? Not knowing the individual woman personally, I cannot say for certain, but in theory there is no reason to assume she couldn’t manage, albeit with support. (Most completely able women, by the way, admit that they couldn’t bring up their babies without support either.) Motherhood is a demanding and difficult task and having a high IQ may be one of the least important pre-requisites. Indeed, for many women, it’s their intelligence which gets in the way.

As long as the mother is loving and attentive, as many of the mentally handicapped women I know are, and, crucially, has support from family, friends or the community, a baby could prosper in her care.

That baby might not get the perfect intellectual environment and might not be an academic superstar as a result, but is academic success the only goal in life? Does it guarantee happiness? A child brought up by a mother with intellectual impairment might still be deeply loved and cared for and might have a satisfying and content life - not things to be lightly discarded.

In spite of such logic, many arguments were made, and continue to be made, about the State’s compelling interest in seeing that this child not be born. Because the mother was incompetent, it was said, the baby would necessarily have to be brought up by the State; therefore it would be better not to allow it to be born in the first place. Leaving aside the fact that the State had already demonstrated its own incompetence and shouldn’t have been criticizing the abilities of others, this is a specious and dangerous line of reasoning.

There are many people who do not presently come under the jurisdiction of the State as its wards, as the woman in question did, yet might still be judged incompetent to bring up children. The socialite more interested in fashion and parties than in a baby’s schedule and needs, the work-a-holic whose ambition supersedes her parenting responsibilities, the slow learner married to another slow learner, the habitual drinker or drug addict, the extremely poor woman living hand to mouth in a slum, the child bride, the illiterate, uneducated woman producing her fifth child in as many years - the list could go on and on.

Are we prepared to allow the State to order the pregnancies of such women to be terminated? The Supreme Court decided, correctly, that we aren’t. But it needs to be said again and again until it finally sinks in that human rights cannot be granted to some people and denied to others without creating the virtual certainty that eventually they will be taken away from everyone.
What if the baby were born with a disability, as many opponents of the Supreme Court decision hinted darkly was very likely to be the case?

What if it were? And here at last we arrive at the true heart of the matter. Disability is, I believe, “The Last Frontier” in the battle against discrimination and injustice. While people are indeed denied basic human rights for all sorts of reasons all over the world, no civilized person ever tries to justify it. When women are raped, when prisoners are tortured, when children are abused, when war crimes are committed, the civilized world recoils in horror. We speak out against human rights violations wherever we see them and so we should and so we must.

Except when it comes to people with disability.

Abortion of girls because they are girls is called what it is: murder, brutality, female feticide. Abortion of babies with disability, on the other hand, is routine, sanctioned and worse, even expected. In the United States, it is estimated that 95% of babies detected to have Down Syndrome are aborted. Women who elect to have their babies anyway are made to feel they are irresponsible, reckless and unfairly burdening society.

Eminent philosophers at prestigious universities (Dr Peter Singer at Princeton is just one example) now speak openly and persuasively of the moral and ethical right of parents not only to abort handicapped babies before they are born but afterwards as well. At the moment, he says, it is acceptable only in the early infancy stage, before the parents have formed an “attachment”. But as he himself admits, if it is acceptable to abort a disabled baby before birth, there should be no problem with doing it afterwards. This opens the door wide to chilling possibilities which even Adolph Hitler might find disturbing.

Sexuality offers a prism through which we can better understand ourselves, the people around us and the values we hold most dearly. When we use it to look at the experience of disability we may find, to our discomfort and dismay, that we are not quite the people we thought we were. Many of us find ourselves uncomfortable at the thought of people with disabilities making choices in their own lives, distressed with the idea of them having sexual relationships and - dare we admit it? - appalled by the vision of them bringing more people like themselves into the world.

The Last Frontier. And, again, it’s later than we think.

Thursday, August 20, 2009


Schools need rules and Karuna Vihar is no different. Here’s one of them, depicted here in words and pictures:



Be Quiet.

When our advisory committee came through a few weeks ago, this was one of the things they took exception to. It bothered them to see the traditional Indian directive to children so prominently displayed in every classroom. “Don’t think,” it seems to be saying. “Don’t speak up. Just watch and learn. We don’t need your contribution.”

But in KV, that's not actually how it works.

A few days after the Advisory Committee, I went to the school to take some photos. When I arrived, there was a meeting in progress. Seven or eight children were sitting on the verandah with two of their teachers planning the show for our Independence Day celebrations. The kids had ideas, the teachers had ideas and sometimes the excitement go to be too much. Several children talked at the same time and no one could understand anything.

That's when the rule would be invoked. All that was necessary was for the teacher to point to the pictures - those familiar drawings remind the children that for a discussion to work, it's important to watch the person who is speaking, listen to him or her, and wait for your own turn patiently.

It isn't always the teacher's turn, which is what I think the Advisory Committee was worrying about. It is just as likely to be a kid's, or an assistant's or maybe, just maybe, the Executive Director's.

Any rule can be abused. It's possible to make the Letter of the Law into a God while the Spirit gets forgotten. But at KV, I find that spirit is one of reflection and thought and it guides decisions and actions. The rule serves a purpose, but no one is too attached to it.

The Advisory Committee bringing it up served a purpose too. Because they asked, we re-visited our initial decision to create the picture-rule in the first place. We discussed it and analysed it and came to the conclusion that, at least for now, we need it.

It's a process. and the questioning and reconsidering is part of it.

Tuesday, August 18, 2009

The Time it Takes to Make Jello

When I was small, my Mom served Jello a LOT. It was Dad's favorite dessert and she must have served it two or three times a week.

There was usually one bowl of red and one bowl of green and it was often my task to actually make it. I can still remember the feel of the metal spoon inside the metal bowls we made it in, as I stirred and stirred and stirred. I was small and it felt like that stirring went on for hours, the steam from the hot water rising with the tart, citrus-y fragrance of the raspberry or the lime flavor and my arm aching from the constant motion.

So weighty was that childhood memory of making Jello that when my sister Lucy sent a whole bag full of the little boxes I quailed, certain I would never be able to find the time to make them all, in spite of how much Dad, who is living with us and missing his familiar old comfort foods, loves it.

This morning I was in a ridiculous rush. Guests arriving, helper out sick, big event coming up on the weekend, me just back from a trip to Delhi - obviously a time to cut corners, do only the essentials and get out the door on time. My unfailing response to such situations is to clean the fridge, wash the windows, get out Q-tips to scour the inner crevices of the blender and - oh, why not - make Jello.

Seriously. I haven't made Jello in forty years, but today I decided to do it. Imagine my surprise. The stirring goes on for precisely TWO MINUTES. And in the chaos of my morning, the clanging of all my inner alarms and the urgencies I invent for myself, what a gift those two minutes were. By the clock, I stood silent and composed, watching my hand move in the same old rhythmic motion I now realized I remembered from my distant past, and feeling peaceful and renewed and suddenly aware that time to an eight year old and time to a woman of 51 are not the same and never will be.

For women like me, the 2 minutes are the gift. For the 8 year old, it's the Jello.

Monday, August 17, 2009

What Would Jesus Do?

Last week I took Moy Moy to Mass for the first time in months. Since I re-upholstered her wheelchair, I haven't been able to take her anywhere in the car because it no longer folds. Her outings have been limited to walks through the neighborhood for which she travels in her fancy (but also unfoldable) stroller.

When Cathleen came home this summer, she brought a bright new folding chair for Moy, making us a two-wheelchair family (probably a first in the city).

So I took her to Mass at last.

Our Bishop, Patrick Nair, has recently retired and moved to our parish and we are all thrilled to have him here. He's a smart man and he gives a good sermon. But he disappointed me this Sunday.

Moy Moy, as most of you know, can no longer eat through her mouth. She uses a G-Tube for nutrition - both physical and spiritual. Since the tube went in, she has been receiving Communion at Mass in the form of the wine, since I can just pour it right in. Each priest has taken a little time to get his head around it, but most of them have adjusted.

This Sunday, it was the Bishop's turn.

I spoke with him before Mass, explained what we needed and why and he agreed. At Communion, he gave me back the little cup I had given him for the purpose, but he looked very nervous about it. After Mass, he came up to where we were standing in the parking lot chatting with other parishioners and without greeting us or even glancing at Moy Moy, in Church for the first time in months, said "What did you do with the cup? How did you purify it?"

I reassured him that I had brought water to clean it with and that that water was also given to Moy, and he relaxed and then remembered his pastoral role, blessed Moy, greeted Dad and Cathleen and carried on.

Now I do understand his preoccupation with the sacred wine. I know that's part of his training as a priest and that we should never be casual or disrespectful of the Body and Blood of Christ. But I am almost certain that Jesus himself wouldn't have worried. I think Jesus would have been so happy to see his daughter back in the congregation he would have rushed over to embrace her, not to question whether the cup she had received Him from had been washed properly.

In fact, he had a lot to say about cleaning vessels when he was on the earth: "Now then, you Pharisees clean the outside of the cup and dish, but inside you are full of greed and wickedness. You foolish people! Did not the one who made the outside make the inside also? Give what is inside the dish to the poor, and everything will be clean for you."

Friday, August 14, 2009

Unwanted 72

I was in a crowded, noisy restaurant this evening and, as is so often the case, a television was on with the sound switched off. One ad, which played three times over, was for an emergency "contraceptive" called Unwanted 72.

The ad shows a stylish woman in a nightclub looking distressed and upset. A friend tells her something (I couldn't hear the dialogue in that loud restaurant I was in, but I could imagine it) and then the ad cuts to a close-up of an "Unwanted 72" package.

Back to the woman, now downing a glass of water.

Final shot: the woman, her friend and two men sashaying out of the club. The woman in question looks triumphant, relieved, and ready to party.

Unwanted 72. Get rid of that pesky, unwanted baby. No problem, as long as you do it within 72 hours.

National television. Kill a baby so you can go on partying. No apologies. Friends, it's later than we think.

Monday, August 10, 2009

The Cure

A hard week, with death and violence making it almost impossible to sleep. Miserable weather - so hot the air is stifling, and the lack of rain makes the coming year a nightmare of drought and famine. A little credit card fraud causing anxiety and too much travel causing exhaustion.

But over and above and radiating through every difficulty and concern is the fact - the unassailable fact - that Cathleen is here. This daughter of ours! What did we ever do to deserve her?

Today she and I went into town to do the grocery shopping. A stolen hour (I was supposed to be working) for the most mundane of tasks turned into a glorious romp (we even had ice cream cones!). In the store, we met Kamini, an old and dear friend. She was so happy to see Cathleen she hugged her five times in five minutes. I counted.

She is a festival in our lives. She makes us so happy we glow. People keep asking me: what's happened? Did you win a lottery?

I did.

Thursday, August 6, 2009

A Terrible Week

Weeks like the one just gone by are rare. Praise the Good Lord. This was a week so awful I still have a hard time making sense of it.

On Thursday, just before our Core Group meeting, we got word that the mother of one of our CVT boys had committed suicide. We stood around the room in stunned silence, trying to register the shocking, sickening news. Atish, her son, has been with us for over ten years. We all knew his Mom well (or we thought we did - now suddenly, we knew we had never had a clue) - it was unthinkable that she had taken her own life.

We lurched through our meeting as best we could. Our Advisory Committee was coming the next day and we had to get ready so we summoned our strength and our wits and went on with the show. But Lord, it did feel like a show. Over the next few days, we talked about the stress she had been under and our own feelings of helplessness and regret at not having been able to alleviate it for her. We reflected on all that she had had going for her and the terrible void she had left in her family and the impossibility of anyone ever filling it - for Atish, for her younger son, for her husband.

Then on Monday night, one of our volunteers was attacked in our guest house. The intruder got inside the place and assaulted her, knocking her over and only leaving when she fought back valiantly - kicking and shouting so fiercely he must have taken fright and decided he was no match for her.

I have thought about these two situations often in the last few days. Though they are, of course, totally different and one compares at one's peril, I can't help thinking that Atish's Mom might have benefited from meeting our brave and spirited volunteer. "You will not beat me," she said in words of one syllable, so clearly even a cowardly would-be rapist could understand. "I am precious. I am unrepeatable. I have a place in this world and you will not take it from me."

She is 23 years old and we have so much to learn from her: how to fight against injustice, how to stand up for what we believe in, how to take the world in both hands and say "Yes! This is who I am. This is what is right."

I wish Atish's mom could have done that. I wish we could have helped her more.

This photo - of flowers cascading over an iron fence - is an image of what we need to create: beauty and strength; the fragile face of love, compassion and concern coupled with the hard, demanding challenge of accountability, responsibility and awareness.

It isn't easy, and no one ever said it would be. We earn our salvation one little step at a time. There are no short-cuts, no quick and clever way around the facts. I don't stand in judgment over Atish's Mom. She came to her end for reasons only she can know. But for a guide in this crazy world of challenge and hardship, I'll take our volunteer's response every time. We have to fight. We have to be ready to say no to the forces of despair; yes to the chorus of life and joy and the victories which are ours if we just believe they belong to us.

Sunday, August 2, 2009


The Foundation is so fortunate in its friends. This is one of our two Advisory Committees - a group of amazing individuals who donate their time, energy, expertise and experience toward helping us become better at what we do.

They are, from left to right: Deep Joshi, Kusum Kanwar, Ann Varuvukala, Dunu Roy, Shaheen Mistry, Shelja Sen and Amit Sen. What a wealth of knowledge, insight and love resides in these seven hearts and minds. And how lucky we are to have them as friends.

This past weekend, we had our annual Advisory Committee meeting in which the seven of them spend time in our projects and then sit with us for hours and hours of presentations, discussions and debates. We share our successes and our failures, talk about our plans and ask their opinions on everything. We come away with new ideas, new understanding and new resolve.

And sometimes we (as in, ME) come away a bit discouraged.

At least that was my experience this time. No fault of theirs - far from it. It was simply the process of preparing for the meeting and then the meeting itself which made me see how much still remains to be done and how far away we are from our goals and dreams and ideals. And, being the person I am, I could also see, with glaring and discomforting clarity, how inadequate I am for the task.

My mistake, perhaps, was in sharing this sense of inadequacy with the group. As a leader, one is expected to always appear in command, at ease with the given situation. It's not the done thing to reveal one's weaknesses or share one's doubts - this only creates anxiety and insecurity in those around you, especially those who are looking to you for leadership.

Maybe, maybe not. I don't share my every single worried thought with my team, but I don't hide them all either. I think that image of calm serenity regardless of the situation makes it more difficult for others to admit their own insecurities and, thus, to do anything about them. I think a human face to leadership makes for a more open, collaborative working style in which other people's gifts can emerge and other leaders can develop.

That's what I think. I could be wrong, of course!