Following the Robert Bruce example

During one of my recent but infrequent travels out of Chennai, when I knew I would be spending some time in Mumbai, I wrote to some of my math friends at IIT(B)– who always seem to be happy to have me come and lecture at their place - that I would be in their environs and be glad to talk to their department on the unexpected pleasures one may glean periodically from non-commutative probability; and they did not disappoint me.

One of them is Jugal Verma, a former head of the math department at IIT(B), who is quite aware of the campaign I have espoused to sensitise people to the world of people with disabilities. In fact it was about 18 months ago that I wrote a piece in a column I then wrote for ToI about how it would be wonderful if the `exalted institutes of higher learning' would serve as role models for (a) accessible and barrier-free environments, and (b) observing road etiquette. And at 6 am on the Saturday that this piece appeared, I sent e-mails to the heads of some 18 such institutions with copies of this piece, requesting them to do their bit towards making their institutes accessible. Knowing well that `head honchos' often consign such mails to some underling and then forget about it, I had the foresight to also mark copies of my emails to sympathetic senior friends (such as Jugal) in the pertinent math departments, asking them to `push the thing along'. Instantly I received an e-response (of about 3 lines of appreciation for my efforts, and two lines directing some sub-committee to take suitable action, from the director of IIT(B), appended to a long e-mail from Jugal pleading for an elevator in the math dept., where he was mortified to regularly see people with mobility problems being carried up the stairs by their friends!

This time around, Jugal arranged for me to (a) be met at the airport, (b) brought to IIT, and (c) arranged the lecture in one of the few venues accessible to a speaker in a wheelchair! This was a non-standard venue, in the guest house, in fact. As I got down from the car and into my wheelchair, Jugal proudly pointed to the ramp leading into the guest house and said `this is one of many such ramps which came up soon after you wrote to the director!' After my lecture, we were all invited for some coffee and snacks on the verandah outside.

Now the verandah outside is a step down – about a foot (only one small step) – and there was no dearth of volunteers offering to lift the wheelchair and carry it down with me in it! But I haven't got to where I am now without making a fuss when that seemed to be called for. The manager of the guest house tried to arrange some planks in a suitable configuration whereby getting down only needed small steps down of just a few inches, so I managed to get down to have my samosa and coffee and chat with my many friends there. When the time came to retrace one's `steps', going up was not as trivially manageable, and I finally got down and hobbled up the step, while others lifted my wheelchair up.

So, with an apology to my colleagues, I said I was going to write again to their director to describe my experiences. Which is exactly what I did: I wrote to him (with a copy marked to Jugal) reminding him of my writing to him a few years ago, and of how I had been glad to notice the ramp he had been instrumental in making available in the guest house; I then went on to explain how I had made a fuss about the verandah not being accessible, because the point to be underlined was that a serious effort must be made to provide a barrier-free and inclusive environment, where everybody (with or without disabilities) would be able to contribute to society, with dignity and independence. If an access audit of the campus had been done before putting in the token ramps at periodic intervals, as I had suggested in my newspaper column at the very beginning, some more ramps would have been put in, as desired. Even now, at many places like this, it will be trivial and cost basically nothing, to have a carpenter put in a wooden ramp with a triangular cross section, which could be kept when needed, and `hidden away' at other times!

(Just today, I saw one:  

such a make-shift ramp in a small 2-room scanning centre in Chennai

Surely, an army of engineers who do rigorous spells in workshops during the first year of their programme at IIT's can take a quick survey on where, and of what dimensions, such ramps are needed and have such aids in position within the month - as against the eighteen months since I first wrote to the director.)

I can make a safe wager that if anybody shows me their home or club or mall, I will show many many places where such make-shift measures would tremendously help the lot of the wheelchair-bound. I assure you that you don't need a Ph.D. to be able to see these things I am talking about.  So why can't `normal' people at least occasionally see the world through `not-so-normal eyes' and see how some easy modifications can make a world of difference for the `abnormal' people?

We can also think; won't you please listen to what we are saying?

Today was another travel day when I would encounter the airlines and be at the mercy of their (in)sensitivity. It is funny how people go by superficial appearances. Whenever I travel, I have to travel with my wife, the reason being my physical instability. We have a perfect understanding and sensibly leave that part of the deciding/acting to that person who does those things better. If a difficult plastic wrapper is to be opened, without a murmur, it goes to her, as the clumsiness of my hands/fingers is legendary. If a trip has to be planned (the itinerary, the booking of tickets, precisely what pieces of baggage we will carry, material to be assembled for applying for a visa or passport, ...) that is left to me as my mind is as clear as the next person for such tasks.

When we travel with my battery-operated wheel-chair, that's a whole circus. We usually get to the airport something like 75 minutes before a domestic flight, and go to the little ticketing-type window which airlines have, that can be accessed before entering the airport. It is always the same: I start explaining to the person behind the window that I will need to check in my wheelchair and then use one of the airline's wheelchairs; the person says `just wait here, while we arrange for somebody to bring a wheelchair'; and we will have to go back and forth saying the same thing a few times before I finally get it across that it would be more time-efficient for someone to come with the wheelchair to the place where check-in baggage is scanned. When we get near the baggage scanning place, I remove the joy stick that operates the controls of the chair, while my wife unzips the suitcase and puts the joy stick in, after which I am seated in the airline's wheelchair, and that is when I am ready for battle.

After that, if I don't object specifically, the universal practice is for the attendant to park the wheel-chair out of the way and not even facing or in hearing distance of the subsequent negotiations which they have whisked my wife away for, `to speak on my behalf'. (She will be the first person to admit that I can speak perfectly well on my behalf!) This is when I know the `authorities' would make a song-and-dance about the battery of my wheel-chair being a hazard. Today, I specifically asked to be taken to where the discussion was going on. The official was trying to say that the rules demanded that they should be able to open up and see the `innards' of the battery, and I came back with `I'm sorry but you don't know the rules! I've taken this wheelchair all over the world and India as well. This is a dry cell battery, and these have been explicitly stated as being admissible'. And when they know you know what you are talking about, they back off like they are doing you a favour.

My basic grumbling point, and the reason for this post is to ask why the wheelchair passenger is always kept in a corner when their able-bodied companions are asked to do the negotiating – as if this lump of baggage cannot possibly have anything intelligent to contribute. Even if we can't walk, we can think, and (most) often much more logically and clearly than those who can walk better than us.

And I take serious offense at being completely ignored. This morning, in the shining bright new terminal at Chennai airport, after we had finally succeeded in checking our suitcase and my wheelchair in, we were asked to wait at an appointed place where somebody would come to take me when it was time to board the plane. It was about 12 minutes before the announced departure time when somebody came to wheel me in. And when we got to the security check point, my wife was asked to go with `all the others', while I was whisked through the security check, while poor Sita was probably no. 137 in the line she had been sent to. And when I was brought through security check, I was quickly taken away to the departure gate because `it was already boarding time'. My pleas that we wait for Sita, because she didn't even have a cell-phone on which to tell her what had befallen me, were of course completely ignored. Not just that, when we went to the departure gate, notwithstanding my pleas, I was carted off to the plane, with a comforting `she will come in the next coach'. This is the only airport in the world where they have not permitted the companion of the wheelchair passenger to accompany him/her at the time of security check!

Madras airport does another brilliant thing. When I go through security check, my stick is being separately sent through the scanner when I am asked to get off my wheelchair and raise my arms so as to be frisked. Not once has anybody had the decency to listen to my request that if they have to make me stand, will they at least wait for my stick to come through the scanner, so I can hold on to that and stand.

It is the same thing ad nauseum. Nobody listens to you at all, on the basis of the masterly inference that one who is forced to be in a wheelchair cannot possibly have anything intelligent to say, and can hence be safely ignored and treated like an uncomplaining sack of potatoes. My lawyer friend the late Rahul Cherian was advising people in the Aviation business and coming up with sensible suggestions and he was optimistic that measures would be in place, soon, to redress all such complaints. I had given him quite a few of my pet problems and he was going to incorporate them into his final formal recommendation. But the good Lord took him to his bosom all too soon, and I wonder if there is any hope of those ambitions being fulfilled. 

Void versus voidable

There was a time when once a couple had decided that they wanted to marry one another, the biggest hurdle to be overcome was getting the permission of the prospective parents-in-law. Now there are greater hurdles placed by the state. It can declare that you are `intellectually disabled' and thereby forfeit the decision to choose your spouse, even if she wants to have you, notwithstanding your `disability'! Talk of kicking a man when he is down! This post attempts to understand the rationale for this ghastly act by trying to interpret, in lay terms – or more specifically, along the logical lines of thinking I am used to employing in mathematics – the legalese underlying this cavalier attitude that strives to make an already difficult life for the disadvantaged almost impossible!

A few days ago, the papers carried a story of a mass marriage that was conducted not very far from where I live in Chennai, and when the newlywed couples tried to register their marriages, two of the couples were not permitted to do so because it turned out that one spouse of each couple had `borderline disability'. In short, the state would not register their marriage on the `legal premise' that marriages involving mentally ill people are null and void.

My lawyer friend Amba informs me that:

There's a difference between "void" (i.e. it could have never even taken place) and "voidable" marriages under the Hindu Marriage Act. Voidable marriages can be annulled by any of the parties, and "unsoundness of mind" is voidable, which means that the marriage could have very well been registered.

"Unsound mind" for the purpose of consent is seen from the Indian Contract Act: 12. What is a sound mind for the purposes of contracting?

A person is said to be of sound mind for the purpose of making a contract, if, at the time when he makes it, he is capable of understanding it and of forming a rational judgement as to its effect upon his interest. A person who is usually of unsound mind, but occasionally of sound mind, may make a contract when he is of sound mind. A person who is usually of sound mind, but occasionally of unsound mind, may not make a contract when he is of unsound mind. So in law, there is no "blanket unsoundness of mind" - whether it is psychosocial disability or an intellectual disability. The actions of the registrar are bad in law, besides being violative of the UNCRPD as well.(Way to go, Amba!)

In terms I understand, this (refusing to register the wedding) seems not unlike asking a 40 year old to solve a problem in high school geometry, and in the very likely event of his not being to solve the problem, to then declare that the person's school-leaving certificate is `null and void' – since being unable to solve simple high school geometry problems surely constitutes some manner of intellectual disability!

A day in the life of a freedom fighter

I had initially used `disability activist' in the title, but as the late lamented Rahul Cherian taught me, `we are not activists; we are from the land of Mahatma Gandhi, and are freedom fighters demanding what is our right'!

Yesterday was the second opportunity I had to see the kind of hard work put in day after day by people committed to the cause of bettering the lot of people with disabilities (PWD). The first time was when Vaishnavi dragged me out at 3 pm some time back to go and do a recce of the metro station coming up near the giant bus terminus at CMBT whose wonderful amenities the papers had been carrying glorious reports about. After muscling our way, past the various hurdles thrown our way, in Vaishnavi's inimical bulldozing fashion to get to the site where these wonderful amenities were coming up, what I finally got to see was a place which I could reach only because my driver Sekar – who plays an admirable and uncomplaining Sancho Panza when I go off on one such quixotic joust of mine – had driven us as close as we could get, and had then pushed my wheelchair on most unfriendly terrain, where there were large puddles of water, and a thin plank of wood putting up a poor attempt at pretending to be a ramp of sorts: I say ` what I got to see'  because Vaishnavi could and did walk up some stairs to see the concourse level)

After this mini-adventure, emails were sent off to the relevant authority regarding the need to ensure accessibility of the metro system to the PWDs who are also citizens of this megapolis which is fast becoming unusable to all those who do not whizz around in their own cars. Of course there has been no response, but the Vaishnavis of the world march on doggedly with fierce optimism, which I'm sure I could not summon the strength (of body or character) to.

Recently, Smitha of the legal unit of Vidya Sagar (the erstwhile wing, in Chennai, of the Spastic Society of India) had been on a mission to get an appointment to meet the Transport Minister of TN to discuss accessibility features of some 100 mini-buses which had been announced to be commissioned for public transport. Again the idea was to equip the buses properly right at the outset rather than having to `retro-fit' and make costly and difficult alterations to an originally faulty design, which can be avoided by already involving PWDs in the design stage itself. She had been constantly contacting the PRO who kept postponing the setting up of an appointment with the Minister. Finally she sent an email saying After repeated attempts for past 1 month, we are successful in getting the consent of the office of the Transport Minister, Govt of Tamil Nadu on 1st April (coming monday), at 3 pm at the secretariet with respect to the accessibility aspect of upcoming minibuses in Chennai.

It so happens that on this same day, many groups of `freedom fighters' had planned a dharna regarding the various statutes in our law books which were still only `on paper' and no serious effort had been put into implementing these statutes after many years. So a small group of about six of us assembled at the gates of the secretariat only to be informed around 3.30 that the Hon. Minister had gone for lunch and that we should call back in 1o minutes. Meanwhile, we had to somehow make a successful entry into the premises of the Secretariat.

That is when Vaishnavi appeared like an Achilles armed for battle, and she breezed through the blockades in her fashion to convince the cops at the gate to let us in despite the technicality that there were seven of us, while prior permission had been granted only for four people. She explained to them that as there were several steps between us and the minister, people on wheelchairs would need the help of at least a couple of semi-able-bodied people to help them negotiate the hurdles. Finally, around 4 pm, we managed to get our cars to reasonable proximity to the entrance close to the elevators which would take us to El Dorado where we could communicate with the Hon. Minister. Some six times we were given contrary instructions on the route to the bottom of the rainbow.

Finally, we went past a long corridor which ended in a flight of several steps, of which we could see at least about 17! Somebody came and asked us to wait while they could see what could be done. After about ten minutes of waiting there – just enough for Vaishnavi to take Smitha's wheel-chair to the place whence we had entered the building, so she could help bring one of our troupe who did not have a wheel-chair, but for whom the walk would have been more than a mite long. And then there was a sudden burst of activity as a cascade of people came down the steps, and in the midst of a sea of flunkeys – several of whom asked us to clear the way by moving our wheelchairs which were cluttering up the way - came the Minister all in white, quite by accident and apparently clueless as to why we were all cluttering up the corridors, until Smitha explained the reason for our presence in chaste Tamil and in a much more calm tenor of voice than I could have managed after an afternoon of having been treated like dumb animals. At the end of it all, the great man first suggested that two of us who could come up to his office should do so at a suitable time to voice our grievances. Upon which he was told very sweetly by Smitha that we all represented the interests of different groups and would like to be heard, and was it impossible for him to fix a meeting in a ground floor room which we could all attend ? And he magnanimously replied that he would get his PA to take down the contact numbers of `our leaders', who would be summoned anon to a meeting.

Who would like to take a bet on:

1. where, between zer0 and infinity, this anon would be? and
2. how sympathetic or meaningful a response could one hope for then?

There was an amazing feeling of deja vu – like playing a supporting role in the Wizard of Oz!

And the amazing thing was that just when I was going to throw up on the way out, at the (in)sensitivity I had witnessed all afternoon, I learnt that at least two of the women in our troupe, who always had the most pleasant countenance throughout this ordeal we'd been through, were not going back to a sane and comfortable home like me, but were going back to rejoin the dharna they had been at until they came to lend their moral support here.

And thus the life of our freedom fighters goes on..... ad nauseum!

Let me conclude this long tirade with some lines that Henry David Thoreau could have written for these amazing women I had spent the afternoon with:

If a man loses pace with his companions,

perhaps it is because he hears a different drummer.

Let him step to the music which he hears,

however measured, or far away.