A Missed Opportunity

This post has nothing to do with disability. The reason for the diversion is that I am just coming out of a really horrific phase of my life and my mind cannot grapple with anything too disconnected from my trauma. Although I hinted about his ill-health, the day after I wrote my arguably - and understandably - most read post, viz. my tribute to Rahul, was also the day I lost my brother. (And this double loss, of first Rahul, and then Mahi, after a week of regular and gloomy visits to the hospital when he was in the ICU and one never got to see and talk to him, and waiting for the bad news at any moment,  is this trauma I am talking about.) Here was a guy barely 5 years older than me (although he was more than 25 years older than Rahul!), in the pink of his health in November, and suddenly things started going wrong and the way the state of his health nose-dived after that was almost like a free fall and equally frightening to see.

His was a most unconventional professional trajectory. After having joined the IIT (just because he wrote the entrance exam and did well enough to be offered a seat the possibility of refusal of which was decried by various uncles and elders in the family). After barely a year of the kind of boot camp that a first year student of the IITs faces, he had the guts to say `enough is enough' and to join a B.Sc. programme in physics, after having been seduced to the subject by the three volumes of Feynman's lectures (which I still possess as a prized bequest from him). He completed a bachelors and masters in physics, and found his soul-mate during his masters' programme and soon thereafter maded two life-changing decidions: (a) he got married because her family was moving to the US en masse, and (b) he gave up physics to get a job as a lowly sub-editor in a newspaper. Before long, at somebody's suggestion, he applied for, and was selected by the Tata Administrative Services. He worked with Telco in Pune for some years, and became something of an expert in Human Relations, following which he moved on to the Taj group of hotels. After a few years, he moved to Wipro for a brief spell before he made an inspired switch from a business-driven world to the peaceful environs of academia in a private University in a small town in England, where he built a credible school for service management.

I still remember the first time I saw him after he had had a whiff of the romance and lure of the academic world, whose praises he was singing with the fervour of a recent convert, forgetting that I had been in academia for close to twenty years by then! But from everything I have been hearing and reading about him since his cruelly early demise, this numerical senioriy I had was rapidly overcome to the stage where he enjoys almost a guru status in his line of work.

Not just academic proficiency, he seems to have touched so many people's lives in such meaningful and deep ways that I feel like kicking myself for having wasted 60 years of my life arguing with him with the contempt and brashness of the younger towards anything older. I, who have been teaching people for most of my life, and have been generally considered one of the better math teachers, will feel infinitely content if I can receive a tithe of the encomiums heaped on him, when my time comes to cross the great divide.

Reading some of these messages from the heart of the many people whose lives Mahi touched, I look back at all the silly arguments we had and can't but think of such phrases as familiarity breeds contempt and casting pearls before swine. Even if it is a mite late,  let me salute you, Mahi, for an exemplary life which I was too brash and cocky to suficiently learn from!

Heaven help us all!

I had, in an earlier post, mentioned that my brother was in poor health. As we went along an oft-used road to the hospital, I was preoccupied with the domestic medical crisis. To cheer me up, my wife mentioned that the pavement on the road we were going on - one of the main thoroughfares in Channai - had an impressively wide pavement, which is not the case only too often in our cities, so I looked out the window for at least some cheerful input. Although she was right about the size of the pavements, I could not help but noitce some obstacles  for a potential wheel-chair user, and which I paused to click with my phone camera the next day when I went the same route:

Hawkers hogging the pavement with their wares

A bumpy ride for a wheel-chair, and a definite hazard for the visibility impaired

Stone seat in middle of pavement

Sand and bricks dumped to occupy entire pavement;, thereby forcing a wheelchair  to climb down and up a 1.5 foot pavement

Our well-intentioned legislations will serve no purpose until and unless there is seriously strict enforcement: for instance, somebody who (a) dumps stuff in the middle of a road or (b) parks any vehicle in front of a ramp or ( c) drives through a red light or (d) drives drunk- must have the book thrown at him : stiff fine at first violation, stiffer one such as revoking of driving license at the second, and a really stiff, eg. imprisonment, at the third.

Coming back to the hospital visit, some four or five of us huddled in the unhappy atmosphere next to an ICU for a while and then some one suggested that we might move to the canteen to drink a cup that cheers. This is where I got my next batch of ammunition for this blog. In order to go from the ICU to the canteen, you have to come down the ramp, and walk along the building a bit. Now there were cars parked everywhere in such a way that the only way my wheelchair could go there was to go back onto the main road (with cars typically zipping along at 80 kmph) and come back around the parked cars on the side road braving such transport as may choose to fly by, typically honking away at the `obstruction my wheel-chair created'. There was a sort of a ramp leading up to the canteen; and this is what the bottom and top of the ramp looked like:

Notice abrupt end to ramp at the bottom (if you can, in spite of the poor quality of the photograph)

One more step after a sharp right turn, if you managed to navigate past the milk containers in the way.

Surely people building a hospital should exhibit more common sense and consideration! Might an out-patient not need a restorative after having finished undergoing whatever she came to have fixed? It will take only a miniscule amount of cement, or a make-shift wooden ramp that any carpenter can whip up in no time, to solve these last two problems!

Only the will to be rendered accessible is needed.

A giant among men

The last few days have been about the lowest point I have encountered in my life. First, I had to come to terms with the fact that the health of my brother, who has always been considered the strong person in the family, had been going steadily downhill for a month and, has spent the last week in the ICU of a hospital, and learning every day that there was a new complication. To the extent that I told my daughter who works in Mumbai that she should probably take some time off and come down to Chennai.

And to make sure that life wasn't treating me too softly, I was dealt the `unkindest cut of them all' a couple of days ago when somebody I have come to love like a brother even though he entered my life only about eight months ago was snatched away from our midst at the young age of just 39. This post is dedicated to him.

People reading this blog would be aware that `disability activism' is what I have been trying to get into for a little more than a year. Some time back, I wrote a piece wondering aloud if `going legal' was the only way. A cousin of mine from Bangalore suggested that I get in touch with the Alternative Law Forum. The upshot of it all was that I came up with one name of a lawyer practising in Chennai and interested and actively involved in disability matters.

Meanwhile, and by an odd coincidence I had also got in touch with Vaishnavi Jayakumar. So I fixed up a meeting with this young lawyer, and requested Vaishnavi to join me (as I was a `babe in the woods' in these matters) when I went to talk to a lawyer about possible help in enforcing existing laws concerning accessibility. And so it transpired that the three of us met one Saturday morning in a coffee shop. That was the first time I met either Vaishnavi or Rahul, and I realised that they were far from being strangers to one other. That morning was an eye-opener and life-changer for me. Vaishnavi's dynamism and Rahul's critical and practically sound approach, in conjunction with their shared passion and zeal for bettering the lot of people with disabilities and striving for an inclusive planet, could not but convey optimism that with such people working towards a joint goal, no obstacle would be insurmountable.

Since that meeting, my life has been enriched in untold ways. I slowly started being included in the activities of various organisations. I started becoming aware of the myriad activities at national and international levels that Rahul was involved in. I was more than considerably impressed with his mails concerning his visits to and work in Geneva on making the pages of printed information in books get out of the clutches of the copyrights guarded fiercely by the publishing industry (primarily in USA and Europe) and made available to the visibility impaired people of the world. There is a must-see  clip of vintage Rahul  (at http://www.youtube.com/watch?v=akrRXI58T-g). In this video, Maryanne Diamond, the President of the World Blind Union is being interviewed (by an interviewer with what sounds like a clearly American accent) where she says in polite terms that while there was great enthusiasm at the beginning of the meeting (to arrive at an acceptable draft of a treaty concerning the involved issues at the WIPO SCCR 24, after 10 days) there seems to have `not been as much progress as had been hoped for and that there was a certain amount of disappointment among the members'. At about this point, Rahul who has been sitting by her side, leans sideways to affectionately rest his head on her shoulder with a `Sorry, I couldn't resist' with his characteristically engaging smile.
Then the interviewer asks him for his opinion, and while concurring 100% with the views stated by Maryanne, clarifies that there is a clear division into two camps - those for and those against the treaty - and that `it is clear who we have to fight against'. Upon which the interviewer asks him just who he feels is against the treaty. And with his million dollar smile and characteristic `no nonsense' candour, he crisply answers  `the European Union and USA'.

His periodical bulletins from Geneva with the occasional video were informative and revealed the extent of his involvement in this work as also his almost childish pleasure in things like the little scooter he was using there which allowed him to travel all over Geneva, rather than just travel from his hotel to WIPO and back because he had had to travel by taxi, which was all he had been doing in his six prior visits to WIPO meetings (see http://www.youtube.com/watch?v=CzKnVkcW7LQ\&feature=youtu.be).

I had the pleasure of seeing him with this `toy' when he came to a little meeting I had organised at my institute to discuss one of the million projects Rahul involves diverse disability rights groups in. As the only really `accessible' place I know for PWD is my institute, I tried to suggest that we meet here, and most others kept suggesting alternative places like public parks and other equally unattractive sites. I wrote a slightly dejected email to Rahul and Vaishnavi saying I sensed an unwillingness to agree to a site proposed by a maverick mathematician who was an outsider not belonging to any organisation in `the movement', and asking if they could use their clout in this community to try and convince people of the advantages of holding the meeting in my place. (On an earlier occasion, the three of us had arranged to meet with an IAS officer in my institute for the same reason; so Rahul knew the wisdom in my suggestion.)

Not only did Rahul overcome the seeming resistance, but also promptly responded by saying that it took him almost three years to be accepted by the community. To get an idea of how `this community' has gathered him to its bosom, please take a look at the beautiful tributes to Rahul at http://www.thehindu.com/opinion/op-ed/a-lightness-of-spirit/article4394284.ece and at http://latikaroy.org/?p=8802. I wish to add this tribute to a truly remarkable soul who was taken away from us too soon by cruel Fate.

Sorry for this non-post

I am afraid this is going to be a `non-post'. When I first started writing a column in ToI, I told the editor that I wasn't sure if I could write something every week and hence suggested that I should probably not commit to writing more often than once in two weeks. And of late, when I started writing only in my blog rather in the newspaper, and because it was so flattering to see so many people looking at my blog on saturdays, I started writing a post every week, and now, I find I am writing something because I have to, and the results are not all that pleasing.

To compound matters, I have, of late, been bothered by a domestic crisis that does not allow me the frame of mind needed to write something meaningful. Let us hope things improve on the home front and I will be able to put up a meaningful post next week.

Space: economy versus consideration

There was this comment on one of the posts in my blog:

I am invited to speak at conferences fairly often and only three of them have had a lift or a ramp to the stage where I am expected to speak -- and the problem of there being no aisle through tables or chairs to get to the front is almost always a problem too.

As I have complained incessantly about the need for ramps where they do not exist, let me devote this post to basicallly make a (possibly overly optimistic) plea to restauranteurs and organisers of various functions to leave a clear three feet (four would be better!) between tables/groups of chairs so people on wheelchairs will have the necessary room to navigate without having to disturb people. (I'll put in a couple of photographs one of these days to illustrate what I am griping about!) This is typically the case when what is on offer is a buffet, and a person like me has only one choice if there is not enough room to navigate from my table to where the food is laid out: and that is to request somebody at my table to (a) go scout the offerings and report to me on what is available, and (b) then go and bring me as much of what they think I may like to eat of my preferred dishes! Wouldn't it be far more considerate/egalitarian  to allow me to do what everyone else is doing: viz., go to the food on offer, decide what I want to eat, and serve myself as much as I'd want to eat of anything?

The same is true at receptions of weddings or family reunions organised in hotels. Given the choice, I would like to move around talking to people I haven't met in a while - just like everybody else - instead of being forced to sit in one place and speak only to those people who specifically come to me to talk to me.

When you come right down to it, it is only economics - in the sense of what it costs the organiser - which decides on whether or not the ambiance would be considerate to the likes of me.

These same considerations apply to the size of elevators, doors. and dimensions of various things. The writing on the wall is clear: more people need to be made aware of the meaning of, and the crying need for espousing, the principles of Universal Design which basically say let your design/arrangement not prevent anybody from doing what everyone else is able to do!

My comfort zones

After my slightly negative post of last week, I thought I should write something positive. One thing which aided me no small amount in this search for positivity was the week-end I spent with my old college friend at a place called Timbaktu (about a third of the way along the highway from Bangalore to Hyderabad). He spends such time as he is in India in this truly idyllic place - the closest thing to a Walden in today's world. There is electricity only for very limited periods of the day, no telecom coverage, so no cell phones or internet! Scary or heavenly, depending on your view-point.

I have had occasion in the past to write about this blind friend Venky, who, not very surprisingly, has an amazing sensitivity to the possible problems `different' people may face. He has built this simple house which has a verandah running all around it, with just two little rooms, a bathroom, and a miniscule kitchen (which my wheelchair cannot enter, on which score I should pick a bone with him!) The first sight of this house is so heart-warming  that I had to click a photograph of it on my inept little phone.  I reproduce that photograph here to show you why the mere sight of it drove me to tears. The big ramp in front was almost like a giant `welcome' mat laid out especially for me!

                               

Having started on the theme of places having been rendered accessible to the likes of me, let me continue by showing how wonderfully accessible my institute has been transformed by our wonderful administrators. I shall put in a bunch of photographs which are listed more or less in the order in which I encounter each of these places almost every day, along with a small attendant explanation/narration.


To start with, my own apartment complex is not very friendly to my wheelchair; for instance, the lift is too small; the only way I can get in is to remove the foot-pedals. In fact, even my own apartment is not particularly accessible now. (I can't even enter my bedroom on a wheelchair!) So I leave my wheelchair in my institute.

But once I get to the institute and hobble my way from the car to my office, I have my wheel-chair to carry me around. To start with, I can get into the lift, and in fact, three more people can get in by my side too!

And my next potentially problematic venture is having to go across the road to the institute canteen for lunch. When construction on this building which houses my office (on the second floor) began, I noticed the few steps that had to be climbed before getting to the elevator. At that time, I used to walk fine but knew I had MS. So partly out of self-preservation and partly on general principles, I used the fact that I was on the `building works committee' and insisted that the only elevator in the institute should be accessible via a ramp; and so the few feet that had already been built were demolished and the necessary ramp incorporated.

                            

So when I get down from the elevator, I have this nice ramp to go down. The path between the library building and the admin building used to be one of those artsy affairs with alternate strips of concrete and grass. and there were two gazebos on either side which provided pleasant venues for formal scientific discussions among small groups. When I saw the first of these, with the inevitable steps, I went and screamed `bloody murder' to my director, and he promised to at least make the second of the gazebos accessible. And sure enough, the second gazebo is accessible now and the path from the library to the admin. building is painlessly smooth to drive my wheelchair on now.

                             

                    

But by far the piece de resistance along these lines involves the entrances to the admin building as well as to the auditorium in the institute, which had both initially had two or three steps from the road level to the floor level inside the buildings. I am indebted to my friend Simon, a physicist in my institute, for this innovative and aesthetically pleasing alternative to a separate ugly ramp on the side of the steps:

Rather than making this post unduly long, let me just conclude with a few more photographs on how the guest house and canteen were turned accessible (`I might need to visit a distinguished visitor - provided (s)he has been given a room on the ground floor of this elevator-less guest house - to discuss math, have some beer, whatever!'):

It is because I do not see why other people with disabilities cannot also be as fortunate as I, to be able to work without difficulty and in dignity, that I began this campaign of writing on such issues! But my institute still `owes me' a few things:

(a) at least one wheel-chair accessible toilet in the campus - preferably quite a few on the ground floor of the guest house as well as the hostel!
(b) an elevator to access the higher floors of the guest house as well as the hostel;
(c) a lift to be able to get up to the director's room and to the Chandrasekhar Hall; and
(d) some ramp or lift to enable me to get on to the `stage' in our Ramanujan auditorium!

You can be sure I'll keep harping on this and not allow them any peace till I have finally succeeded in having helped create a completely accessible institution.

On the Priorities of Different People

I had not originally wanted to `wash this dirty linen' in public. My only excuse for having changed my mind is that I have got into a `habit' of posting stuff on my blog on saturday mornings – initially only alternate ones, and almost weekly of late – and I have been preoccupied recently with other math-related work, and only have this somewhat half-baked piece available on hand. It has to do with `my column in ToI' being `taken away' from me after more than a year. I realise it is a free country and people can and should make their own decisions. But the reasons for their doing so continues to baffle and irritate me.

The beginning of the end came when the editor whom I had been in contact with all along wrote a few months ago saying he was finding it increasingly difficult to veto the prevalent desire among his senior editors to drop my column for various reasons - from the effect of the fluctuating dollar-rupee equation on the rising cost of newsprint, to my excessive use of `I' in my pieces,.... As an exercise, I compiled a list of (at least two) headlines announcing the news items that their editorial board had decided to carry, instead, on the Trends Page, where my column used to appear in happier days, on each day of one week in mid-September:

20: (i) US woman breastfeeds dog to feel motherly

(ii) Sleeping posture holds clue to your personality?

19: (i) Mom sells breast milk online, docs ring alarm bells

(ii) Dolphins can stay alert for 15 days

18: (i) Crazy about making money? Go for a jog to blunt the urge

(ii) Skipping breakfast leads to junk food craving

17: (i) Attractive people have desirable traits, ...

(ii) Every hour of TV you watch shortens your life by 22 minutes

16: (i) Boss smiling at you is bad news

(ii) It's official: vegetarians outlive the meat-eaters

15: (i) Spray `love hormone' to beat alcohol addiction

(ii) Coffee can slash cancer risk (together each pair takes more space than my column used to.)

I asked my editor if this was really what his Board

considered more vital or absorbing matters than those discussed in my column.

Judging from the several months' silence that has been the answer to my mail to him, I gather they are!

People I meet on the streets ask me why they do not see my column anymore; and I tell them the newspaper has stopped carrying it for their own reasons – and feel slightly embarrassed in so accepting defeat! In future, now, I can tell them to read the gory details of this transition on my blog.

What I would be very pleased by and part of the reason for my writing this piece is if somebody reading this would weigh in with somebody of some editorial clout to come forward and say `here, come publish your stuff in my newspaper/magazine'.