The Disability Free Pass

Matthew, who has a mental handicap, has five brothers and sisters. The other children get quite a few treats because of him through gestures of kindness offered by local organizations. A free afternoon at the fair, for example, or tickets to the circus: "For the handicapped and their families.” There is never any shortage of volunteers to ride shotgun with him for these fun events. After one such enjoyable outing, his sister Sophie asked her mother in conspiratorial tones: “What happens if they ever find out that Matty isn’t really handicapped?”

Matty isn't really handicapped, at least according to Sophie. He's just Matty, her older brother, whom she has known her entire life. She's not above making the most of what other people perceive, but in her own mind, she knows the score. And the truth is: Matty isn't really handicapped.

I was reminded of this story yesterday while listening to an NPR (National Public Radio) interview with Ian Brown, author of "The Boy in the Moon" a memoir of his life with his severely handicapped son, Walker.

Walker, like my daughter Moy Moy, has difficulty swallowing so he eats through a tube. It was surgically inserted directly into his tummy. I laughed out loud when I heard Ian Brown describing the difficulties of tube feeding:

Terry GROSS: Since he can't swallow and has to be fed with a tube, describe what feeding him is like.

Mr. BROWN: Well, (we had) to hook him up . . . it was very complicated. He'd be asleep, and you had to hang a feed bag up on an IV stand, and that was a gravity-fed thing, through a little lock in the tube.

And the tube then would go down through his sleeper, a hole that you would cut in his sleeper, into this little Mickey valve, they call it a Mickey, that is permanently in his side. And it has a little stopper in it.

So you connect that up, and you turn the pump on, and then it would slowly feed him throughout the night. But, you know, if he woke up, and he started hitting himself, then, you know, you've got to do everything in reverse. You've got to turn off the pump, you've got to lock the little - the line so that the stuff that's in the line doesn't come shooting out, which I, you know, constantly forgot.

You've got to unzip the sleeper to get into the Mickey to undo the Mickey then take it out, out through the hole, hang it up so it doesn't drop onto the floor. You know, then you've got to pick him up and take him downstairs and give him a bottle because though he can't really swallow without aspirating, the bottle seems to calm him down a little.


Moy Moy has a tube in her tummy too. And for the first three days post-surgery, we also found the whole process mystifying, challenging and unbelievably difficult. Then we got used to it. Three days. Now I know how to unclog the tube when it gets stuck and how to tell when she is about to cough and spurt the contents of her tummy into my face. I know how to remove the tube and how to insert a new one (which I was originally informed could only be done by a surgeon). And we don't have the new-fangled, even simpler system that the Browns did for their son, with a gravity-fed automatic process or a Mickey button with a little valve.

It's e-a-s-y. Definitely easier than spoon-feeding a child who has trouble swallowing and worlds more convenient when it comes to administering medicines. But it's fun to shroud the whole thing in mystery. I've done it too, so I don't blame Ian Brown. The average reader of his newspaper or the listening public at NPR has no idea what tube feeding involves so it's simple to impress them and simpler still to create an image of parents struggling bravely and poignantly to care for their poor disabled child. I know, I know.

But I also know that most of us parents have worked out a system. Most of us have back ups and safety nets and ways to get around just about anything. At least those of us who are writing books, essays and blogs.

So what motivates us? Why do we like to make things sound more difficult than they are? Why do we need to make what we do seem more dramatic, more enormous, more fraught?

I think we are worried that people will forget us. I think we are afraid that because we make it look easy, people will think that it IS easy.

It's easy to pour formula down a tube - once. It's easy to change a nappy - once. It's easy, even appealing, to wriggle out of an event we don't really want to attend by saying "It's just too difficult. I've got a child with special needs." Everyone nods; everyone sympathizes. No one understands that moments become years, that the work of a day can stretch into a lifetime and that while taken one at a time, each act is manageable, added up and tallied, they all amount to nothing. We feel we have nothing to show for ourselves. Nappies changed; feeds given. Years gone. Decades.

My friend Natasha Badhwar says "Days are long, months feel safe. But the years, the years seem to be on the run." We are chasing our years, we are running after our lives, we are hoping that they really do amount to something, that all we are pouring out for these children we love so dearly, so helplessly, is adding up to something significant. Please forgive us when we overreach. We know we are doing it. We know there is nothing heroic about the one tube feed, the one nappy, the one night of broken sleep. It's the years. The years. The long, long avenue of years.

Toy Story

A Mandate and A Budget. What could be better? We needed toys and books for the Doon EIC and we had money to burn. I canvassed my friends for suggestions of where to buy what, enlisted Kavita Arora from Children First and Deepa Bhushan from my ancient history and set out on a grey and stormy summer day.

Deep breath. Money to burn.

I had to keep repeating this to myself in an encouraging tone. Money to burn. Lots of money.

For one accustomed to scrounging at yard sales and my siblings' basements for cast-off yet astonishing toys and books, having actual money to spend was thrilling. But also alarming. 76,000 rupees. 76,000. It's harder than you think.

At Store #1, I managed to spend 6,200. All toys.

At Store #2, Eureka (the bookstore for the young) which, by the way, you MUST visit if you have anything to do with children - what a find!!!, I managed another 6,300. But toys are easier to buy than books. Toys you look at quickly and decide. Books! You have to read them. You have to gaze at the pictures and turn the pages and laugh at the jokes and the funny illustrations and THEN decide.


Deepa and I took so long in that shop that Kavita finally had to leave us and go back to work. We could have spent all day there, but we were getting hungry and there was still a lot of money to spend.




By Store #3, post lunch, and with a providential cold front moving in, we got a bit reckless. "Buy both," Deepa said as I vacillated between the ride-on-car that looked like a fire engine and the one that looked like a rabbit. "Why not?"

"A doll house?" Of course.

"Wooden blocks? A baby walker? A wooden train? A tent? A swimming pool?" Oh, why ever not?

But by now, my debit card was acting up. So many demands! My bank detected "Unusual Activity", and, much to the shopkeeper's chagrin, my card was declined.

Oh, the ignominy!

I called Vandana, our accountant, she conferred with the bank and finally informed me that I had a limit of 15,000 per day. "Probably for your own safety," she said gently yet pointedly. (Vandana hates to see anyone - especially me - spending money.)

So I switched to my American debit card, paid the Rs 17,000 and moved on to the next store.

There, we managed to spend Rs 8,500, again on my American card.



By now, even Deepa had to bail out and I was left on my own, still on my mission: EVERY TOY IN DELHI OR BUST. Store #4 had a wonderful collection and a very nice shopkeeper.



But as nice as he was, when my American debit card was declined, he didn't offer to donate the goods.

Oh, no! I had been afraid of this. Every now and then, my American bank forgets that I live in India. They see some crazy person in New Delhi making mad purchases and they swing into action to protect me. I knew there would be an email waiting for me once I reached home: "Suspicious and possibly fraudulent activity has been detected on your account. Contact Bank of America immediately."

Luckily, I had one card left to play - an American credit card. Quickly, quickly, before they could catch me again up to my nefarious and possibly fraudulent activities, I paid for the toys, raced to the wine store for a few bottles to take home and then hopped in the taxi, chuckling just like Santa Claus.

You think I'm joking?

Painting Walls and Winning Hearts

My Name Is Jo, But You Can Call Me Job

A few years ago, my children and I were the "last straw" in someone else's life. This friend had endured a series of calamities in her family and we arrived with ours at precisely the wrong moment. Circumstances were such that we had no choice but to depend upon her for help and she bore the imposition with gritted teeth and a sighing, heroic, martyr’s air: a peculiar combination of resignation and accusation. It’s not easy being someone else’s personal cross.

At the time, I was angered by the unfairness: could we help it if we were sick and far from home? We hadn’t planned it this way. I remember feeling hurt and insulted by the obvious implication that we were just another terrible thing happening to her, rather than people suffering a misfortune all our own.

Now I have more sympathy. For the past six months, my family has endured a sea of troubles that seem to have been sent our way on purpose - all neatly wrapped up with bows, ribbons and tags with our names engraved upon them. A stroke, four bouts of pneumonia, a broken foot, a broken back, a broken pelvis, viral fever, two rounds of eye surgery, a seizure disorder, even two deaths (both under heartbreaking circumstances).

I say that my family has endured these trials, but what I really mean is that I have. Each illness, every crisis has felt like one more awful thing happening to me; one more catastrophe for me to wade through, one more test of my ability to face adversity.

Forget that none of these problems has caused me any physical pain. That I have not financed any of the recovery plans. That the major impact on me has only been a sense of sadness, more work and more needing to orchestrate contingency plans. It doesn’t matter. I feel like Job. I sigh deeply and frequently.

But the more I think about it, the more I realize that there is no such thing as Job, at least not the one we all know or imagine: the lonely servant, the just man who was still punished by God, the stoic saint who suffered grievously and alone.

Because in fact,  we never really suffer alone. All that happened to Job - and his afflictions were many and horrific - happened to others right along with him. If he lost his children, his wife did too. If he lost his fortune, his employees lost their jobs. If he was covered in horrible boils and painful ulcers, someone had to look after him in his agony.

Misery doesn’t actually love company. Misery wants the limelight. Misery wants to be the one and only, the one worthy of pity, the one to be sympathized with and marveled at: How do you do it? we want people to ask. You are amazing, we want them to say. I could never do what you do.

So to not be miserable - I’ve just learned this! I have to share it! - company is crucial. Company is key. We need to share the burden and we need to see that the burden was never ours alone in the first place. “Send not to ask for whom the bell tolls, it tolls for thee” is not pious and poetic instruction - it is the truth.

Being human means sharing in the human condition. It means that what happens to one happens to us all. At some times (as in my house for the last six months) it’s more apparent than at others, but that’s just the way things go.

I believe that the more open we are to others, the more likely it is that we will suffer. But the opposite is just as true: that the more open we are, the more we will make a space for joy to infiltrate our lives and the more others will reach out to us in support and friendship and - sometimes - miraculous rescue.

It happened to me today. A man I love was floundering in despair and anguish. Another man - a gifted and caring psychiatrist - just happened to be in town. I was able to bring the two together. Why else are we here on this earth?

Soap Nuts

I love doing laundry. I enjoy sorting the clothes by color and fabric, choosing the water temperature and pushing all the machine's buttons. (For many years, we washed clothes by hand. I did not enjoy that. Nothing like a washing machine for reducing drudge work. Every home should have one.)



I especially love hanging clothes to dry. What a satisfying feeling, to give each piece an expert f-l-i-p, and place it neatly on the rack to flutter in the warm breeze. We hang ours on the roof-terrace, where all the neighbors can see what I'm up to as they do theirs. I am not an early riser, as they all are, so my status was somewhat pathetic as our clothes never appeared on the racks until long after theirs were done and folded. Then I discovered a little trick. I do a few loads late at night (when my neighbors are all no doubt sleeping - SO LAZY!) and now emerge proud and industrious almost as early as they do.

We do a ton of laundry in our house. Moy Moy produces most of it, but a household of five, plus Vikram's family, plus frequent guests means we use a lot of water, a lot of electricity and a LOT of laundry detergent.



I love washing machines. Like Gandhiji and the Singer Sewing Machine, I believe the washing machine is one of the greatest inventions of our time. But laundry detergent? I cannot stand it. It's wildly expensive, for one thing and the strain on our budget given the amount of it we require, strikes me as criminal.

But even worse (she says nobly) is the damage it does to the environment. In what seems a counter-intuitive process, the very substance which produces clean clothes also causes lasting and extensive filth in our environment. The European Parliament's Environment Committee has just called for a complete ban on phosphates (the worst offenders in the chemical makeup of laundry powders) in detergents.

The reason is simple: "Phosphates released into water cause algae to grow at the expense of other aquatic life. This phenomenon, known as "eutrophication", can cause "red tides" or "green tides". The leading sources of phosphate discharge into surface waters are agriculture and sewage. Detergents come third."

The European Parliament wants this ban to come into effect from 2013.

But here in India, we don't need to wait so long.

Who remembers REETHA? Also known as soap-nuts. Soap-nuts! Such a charming name for what is actually an almost miraculous little product. I was first introduced to them by Priyanka, a friend who is trying to market healthy, environmentally safe products. Soap Nuts is her first venture, and she's already got me sold.



When she first told me about them - a totally natural soap which grows on trees - I couldn't believe it. Turns out everyone's grandmother knows about them, and has used them for generations. You can buy them in an old-fashioned grocery if you have to, but if you are lucky enough to live in Dehradun, you can just walk down to the tea gardens and pick them up off the ground.



I was even luckier. Priyanka gave me a box of my own. Each box comes with a sweet little white cloth pouch with a drawstring closure. You put four or five nuts in the pouch, tie it shut, and toss it into the machine. No need for detergent. Even better? You can use them again. And again. Priyanka's experiments indicate that one pouch full will last three or four loads if you use cold water. (In hot water, you can only use it once.)



Priyanka was a font of information. She told me that Soap Nuts are actually not nuts at all, but berries and that they come in two varieties: sapindus trifoliatus (Small Soap Nut) and sapindus mukorossi (Large Soap Nut). The Large Soap Nut is the most commonly used in cleaning (probably due to its size & ease of harvesting), but both varieties are effective.

Soap Nuts contain large quantities of saponin in their shells, which acts as a natural, gentle detergent when it comes into contact with water. Without added chemicals, fragrances or dyes, Soap Nuts are safe and gentle for handwashing delicates, yet tough enough for regular laundry. They will leave your laundry soft, clean and fragrance free, without the use of fabric softeners. They are also good for people with soap allergies as they contain no artificial dyes or fragrances - the usual source of allergies for people with sensitive skin.

All excited, I showed the nuts to Padma, who helps in the house and who often does the laundry. "Can you believe this?" I asked her. "They're free! We don't have to buy Surf anymore."

"Oh, reetha," she said, dismissively. "We get them from the tea gardens all the time."

I could see she wasn't impressed. "Let's try it," I insisted. And for a few days, she dutifully filled the little white bag and tossed them in.

Finally one morning she said - a bit urgently - that we really HAD to go back to Surf. "Moy's clothes aren't coming out clean," she said accusingly.

This was very amusing because just a few months earlier, I had said the same thing to her. Moy drools a lot and saliva, surprisingly, leaves stains which are quite difficult to remove. When I had pointed it out to Padma, she had explained that even with hand-scrubbing (with Surf), she wasn't able to get them clean. That, somehow, was acceptable. Not getting them clean with reetha was not.

So the lesson? If you pay for something and it doesn't work, at least you've tried your best. If you get it for free and it doesn't work, well, what else can you expect?

I am a convert. I'm all for reetha. But I've still got to work on Padma. She's a tough nut to crack.

Round Up The Usual Suspects

This morning an elderly neighbor called to ask if I could help her find a new maidservant, someone to wash the floors and do the dishes. The old one, she said, had been stealing from her. A gold chain here, a pair of earrings there.

"You mean you caught her in the act?" I asked.

"Oh no," she admitted. "But I know it's her. Who else could it be?"

Who indeed?

Several years ago, we had a break-in at Latika Vihar. I called the police to file a report and they came down to survey the scene of the crime. They stomped around importantly, asked a few questions and made a few notes. Then, as they were leaving, they said to the two of our staff who had discovered the theft: "Come to the chowki this evening at eight."

Raj and Ganga Ram went pale.

"Why do you need them to come at eight?" I asked.

"Madame, no need for you to worry. We'll talk to them ourselves."

"You can talk to them now," I insisted.

"Just come at eight," they said again to Raj and Ganga Ram.

"I'll come too," I said. "And I'll bring my husband."

"Madame," they said urgently, drawing me aside. "Don't you want us to beat them up?"

I stare at them blankly before I respond. "No I don't want you to beat them up," I say as if speaking to morons. Ganga Ram is like a younger brother. Raj could be my son. No I do not want you to beat them up.

Where do I begin? I am actually speaking to morons.

For the past eight weeks, Padma, who works for us during the day, has been doubling as a night nurse for Masiji who had a fall and needs help getting to the bathroom at night. The first few nights, her son dropped her to our house. On Day Four, she asked if I would mind picking her up in the car. Her son, she said, was getting hassled at the police post on his way home.

I stepped in soon enough that he didn't - in fact - get beaten up, but other boys his age were not so lucky. Nor were old men heading home after a day's work. In fact, anyone on that particular road - as long as he was poor and unimportant - was fair game. Those boys and these men were returning home via Vasant Vihar, the city's "fancy" neighborhood and it was safe to assume they were up to no good. A little pro-active beating would show them just who was boss while reassuring the gentry that the police had their interests at heart.

Except that all of them had just done an honest, hard day's work. Some of the boys were kabari-wallas, collecting trash that no one else would touch and recycling it down to the last possible scrap. They keep our city cleaner than any of us do. Some of the men were sabzi-wallahs, bringing fresh vegetables to our doorsteps to save us the trouble of going out to the market to buy them. How we welcome them when we need them. How instantly we forget their existence once they are gone.

It sickens me that the first people we think of when crime is the issue are the ones who are least likely to commit it. Not because they are more virtuous than anyone else but because they have so much more to lose AND because they know they will be the first ones suspected. It's a vicious, evil circle and we should hang our heads in shame if we ever set it in motion. The call to "round up the usual suspects" should send us all to the mirror.

Why My Mother Would Not Have Joined Facebook

After my mother died, my sister Lucy kept discovering interesting things she had left behind. One of the most fascinating was a do-it-yourself autobiography which someone must have given her (it was definitely not something she would have bought for herself).

Called "The Book of Myself", it is a blank diary with pithy statements at the top of each page which the diarist is meant to complete. For example:

"If I had any trouble with Mom growing up, it was in this area:"

MY Mom's answer? "None."

"I wanted this person to be my friend, but the feeling was not mutual."

Mom: "No problem people!"

"This person significantly influenced my life growing up:"

Mom: "No one in particular."

"This is the profession I most often mentioned when people asked me what I was going to be when I grew up:"

Mom: "I don't remember being asked."

"I kept this secret from almost everyone:"

Mom: "No secrets!"

"One big misunderstanding with a friend:"

Mom: "None."

"I learned to take myself less seriously through my friendship with:"

Mom: "Not applicable."

"I regret having burned this bridge:"

Mom: "I do not recall having burned any."

"Of all my personality traits, I hope my family will remember this one about me:"

Mom: "No comment."

The whole book is like this. Page after page after page of searching questions or leading phrases, each one answered in three words or less, brushed off,  pushed aside, deemed irrelevant or - perhaps - impertinent. After the first few pages, the answers become predictable. You know for a certainty that there will be NO revelations here. Yet each question is politely answered, as if the book had a power of its own, as if, in spite of having no intention of sharing anything personal, she still felt she had to respond.

There was one way she did reveal herself, however. Throughout the book, you can find her proof-reader's pencil at work: a comma added in the introduction, a redundant word crossed out in one of the headings, a misspelling silently corrected. 

But her own personal life is strictly off-limits: No mentors that she can recall, too many friends to list, no romantic interest other than her husband, no conflicts of any kind, no memorable teachers, no chores she disliked, no worries, no fears, no burnt bridges, no secrets!

I, on the other hand, provide a wealth of information not only for my friends and family but for their friends and families too. I have this blog and I love facebook. A day is incomplete if it doesn’t include an update or two. Some are profound and revealing: my worries about my daughter’s disability, my difficulties living in a joint family, my fears about nuclear war and global warming; but most are inane and of interest to no one but me:  an unexpected hailstorm in Dehradun, my passion for The West Wing, the soup I am planning to make for dinner tonight.

Yet even the most banal of comments (often the more banal the better) elicits a string of responses from my friends. Encouraged,  I make rash statements, declare my love and my disdain openly, take sides and express opinions with seldom a thought for who might be reading what I say or what anyone else might think.

My mother was far more discreet.  Knowing that words could be misunderstood and that what seemed like just a simple comment could in fact be wounding and unforgettable, she chose silence more often than not. 

But does it follow that her generation, comprised of those who kept their secrets close, who avoided social networking and would have refused to indulge in the mindless chatter of the net are by nature deeper? That their characters were stronger than ours and their relationships more lasting?

I doubt it. As parents, while we all worry about the ubiquitous nature of the net, and particularly about social networking sites and their deliberate and cultivated shallowness, I think our children are simply growing up with a different version of the backyard fence, the village well. Some of us had chatty mothers who yakked on the phone for hours or stood in the grocery store aisle holding up traffic to catch up with a neighbor. Some of us didn’t.

As a bit of a chatterer by nature, I think the thing to ponder on is not the mode or the frequency of communication but what is communicated. In my mother’s case, her reluctance to share personal details was itself a revelation of epic proportions, a clue to her selflessness and humility and, perhaps, the explanation for her kindness and deep compassion.

There have always been tell-alls and over-sharers; todays “forwards” are yesterday’s hand-written chain letters. Mom, on the other hand, really didn't think her hectic inner life was anything so amazing that it had to be retailed to the world. Ironically, that means that her mystery and allure just go  on increasing for me and many others who knew and loved her.

On facebook as in life, less is often more.

Just Playing?

On this day of turmoil and revenge, I thought it would be nice to remember the joys of childhood and innocence. 

One of the questions we are so often asked at Latika and Karuna Vihar is "Don't you ever teach the children? All they seem to do is to play." 

It's so hard to convince parents that when they play, children are learning all they need to know, that their brains are hard-wired for this, that for kids, play is work and that they actually need to do it to grow and flourish.

When Marcie was here last week with Paula, she told me about a poem by Anita Wadley about the importance of play. I loved the idea, but I wasn't wild about the way it was written. So I did my own version below and added photos to make it even more fun. I tried to give a link to the original version at the end of the post, but I keep getting an error message - just google Anita Wadley if you'd like to read it.

 

Building castles out of blocks

I dream of shape and form

I wonder about balance

And how a house is born.

I stack the blocks so carefully

I keep myself quite still

I’m learning how each piece behaves

And how a space is filled.

I’m going to be an architect.

And you think I’m just playing?

Wearing Mama’s high-heeled shoes

I stand up tall and straight

I pack my briefcase on my own

And kiss the kids – I’m late!

I know they want to tag along

But Mama has to work

I’m off to court to try a case

I’m wearing Mama’s skirt.

I’m going to be a lawyer.

And you think I’m just playing?

This picture that I’m working on

Was going to be a tree

But on the way, another thought

Seemed just as good to me –

A tree of stars, each branch alight

Demanded to be drawn -

The vision from inside my heart

Appeared here on its own.

I’m going to be an artist.

And you think I’m just playing?

My students sit in tidy rows

And wait for me to speak.

Well, three are dolls, and one’s a cat

Who thinks I’m speaking Greek.

He won’t sit still or do his work

He doesn’t like to read –

For him I’ve got an IEP:

He’s got ADHD.

I’m going to be a teacher.

And you think I’m just playing?

 

This hole goes clear to Africa

Straight down, clean and bright

I’ve got my shovel and some forks

I’m sure my map is right.

I’ve been working here since morning

You can help me if you wish

But don’t disturb the little elves

They’ve just come off their shift.

I’m going to be an explorer.

And you think I’m just playing?

I’m busy with this puzzle

I have to fit this piece

The one that seems to have no home

No matter how I squeeze.

It seems some rules are absolute

Like square pegs and round holes

I’m learning how to work it out

I’m focused on my goals.

I’m going to be a problem-solver.

And you think I’m just playing?

 
Ask me what I did today –

The answer’s always “Played.”

At school, at home and on the bus –

My mind’s just built that way.

I’m a child and play’s my job

It’s what I’m meant to do –

It’s how I learn about the world

And grow to be like you!

I’m going to be a grownup.

And you think I’m just playing?