Thursday, 15 January 2015

Keep running to stay in the same place

I was struck by the quite amazing similarity between different aspects of my life since I was diagnosed with multiple slerosis a dozen years ago. Thus, consider the following list, and the parallels between them that I wish to illustrate:

(a) the actual onset of the disease and my ongoing attempts ever since, to cope with it;
(b) the sensitivity of people/organisations towards people with disabilities and the attempts of a group of people whom I have joined in continually ongoing efforts to make a dent in centuries of indifference;
(c) the insensitivity and power-mongering among `leaders of the disability sector'  and their (non-) reactions to attempts at raising levels of inclusivity;
(d) the lethargy of government officials allegedly in charge of `social justice and empowerment',  their reactions to attempts at raising levels of inclusivity, and their total lack of comprehension of what they are supposed to be doing.

And now for the `parallels':

(a) The ability levels of my limbs, particularly the left leg and left hand, have been steadily declining (although I am happy to note that the rate of detioration is not as rapid as it might have been). I have been undergoing physiotherapy for about an hour, thrice a week, for the last 12 years, and trying to save the other days of the week as allowance for flagging energy levels and feeling fatigued almost all the time. And it is as if I never did anything: there is NO improvement in my condition. The lesson seems to be: I must do all those things to at least maintain the status quo, unpleasant as it may be.

(b) There is total lack of sensitivity or awareness of the general public as far as the need for an inclusive and barrier-free environment which could facilitate independent living of people who might be elderly or have some manner of disability. The hurry to take care of one's own needs always eclipses the rights of the fellow-man. Thus, one always sees people parking their cars or motor-cycles in a manner which is bound to inconvenience others. So much so that the City Corporation of Chennai has taken it upon itself to provide wider footpaths with cut-aways which will enable a wheel-chair user, for instance, to (a) use the pavement, and (b) get off from the pavement and down to the road, and vice versa. A group of my friends, calling themselvs the Disability Rights Alliance (DRA), has been roped in by the Corporation to do `audits' of the pavements where they have been working. Several week-ends, we have gone with groups of volunteers, with our wheelchairs and crutches and white canes(*), distributing pamphlets to residences and retail outlets, asking them to ask their visitors/clients to not use these ramps to get their cars or motor-cycles onto the pavements and park them right across the pavements. Every week-end, it is the same scene and same story: people say `first you ask all the others to remove their vehicles; then I'll remove mine' or `I'm parking it for just two minutes; then I'll take it away'. It is as if the past week-ends' exercises had not taken place at all!

((*) In order to counter the oft-repeated and ridiculous questions such as `but how many wheel-chair users do you see?', we have to show we exist - not that it does a fat lot of good!)

(c) I have been crying myself hoarse in this blog about attempts to `pass the RPWD Bill of 2014'. The point is that there are no laws `with teeth' concerning rights of PWD in India, in spite of our having been one of the first signatories of the UNCRPD, and an attempt was made, after secret negotiations between the `leaders' of some Disability Rights Groups in Delhi and the leaders of the Congress party in the dying days of its last tenure of power in Delhi, to hurriedly push through some legislation on a horribly mangled Indianised adaption of tghe UNCRPD. Fortunately these secret and self-serving dealings were discovered just in time and a big hue-and-cry was made by many right thinking Disability Groups to have this almost-born Bill handed over to a Standing Committee for review after the elections were over and the new Government took over. Not long ago, we heard that this Standing Committee was seeking submissions from interested parties regarding this bill. You can be sure the DRA and many of its members sent in such submissions, with pleas that they be allowed to make personal submissions before the Committee took any decisions. About a month ago, we heard that the Standing Committee was going to conduct its hearings, and heard two days later that these hearings had taken place; upon inquiry one finds out that the people invited to present their views were the same `leaders' from Delhi who had failed in their first attempt to push through their butchered version of the UNCRPD, and only something like two of 15 people invited for those hearings were from outside Delhi! After DRA again made some noises on sicial media, etc., we were told that the Standing Committee would be `touring around India' soliciting views of interested parties from other cities such as Chennai. And the latest news is that the Standing Committee will conduct a meeting in Chennai on Jan 29th, possibly also visit Bangalore (according to information apparently from Javed Abidi, one of the `leaders' in Delhi earlier alluded to, who always seems to be privy to such information) and have a `round table meeting' in Delhi on Jan 31st to finalise the findings. This ridiculous lip service to democratic functioning, and tendency to finally letting only Javed and his henchmen in Delhi decide the running of all matters pertaining to PWD, is further proof of the utter irrelevance of well-meaning efforts of other Groups like DRA fighting for Disability Rights.

(d) One reads reports in the newspapers with sickening regularity of the indignities that airlines subject PWD to - from deplaning a passenger with cerebral palsy who had already completed boarding formalities only because the pilot took one look at her and decided that she was a threat to the security of `his passengers', to Air India misplacing the wheelchair that had been checked in by a paraplegic, and not make alternative arrangements for her until some 55 hours after having deposited the poor passenger on foreign soil and letting her try and come up with make-shift solutions and manging on her own without her wheelchair. The DGCA has done precious little to improve the plight of PWD in Civil Aviation. The Ministry of `Social Justice' demands the several million PWD of the land to get a certificate to prove their disability in order to avail of such minimal concessions as they may be entitled to - the only problem is that these certificates can only be obtained in specific government offices which are all notoriously inaccessible - for example, in a third floor office in a building without elevators. Precious little has been done to even utilise such funds as they have been allotted to enforce the laws of the land in making public spaces and facilities accessible and barrier-free.

Bottom line: despite your most well-meaning efforts, you are dealt placebos with great fanfare, while the disease corrodes the innards.

Wednesday, 7 January 2015

The king is naked

I want to put on a different cap in writing this post which has nothing to do with disability. I want to talk about something that has been bothering me at the scientific elite of India not putting up their hand to make some kind of statement when there is some development, where their scientific acumen is surely called upon to take a (and preferably, the right) stand. In fact, I tried to publish this in  journal run by one of the academies and the bottom line of the response I received from the editor was: I believe as written now, it is not suitable for publication in a science journal, but a proactive re-writing will communicate your thoughts more effectively. 

As I get to decide what I can post in my blog, here is an updated version of that rejected piece:

I do not think it would be unfair to say that most Indian scientists have always had a very high opinion of their calling. The number of times I have walked the corridors of, and the number of  cups of coffee I have drunk at, such august high temples of science as the Tata Institute of Fundamental Research, Mumbai, the Indian Statistical Institute, Kolkata and the Indian Institute of Science, Bengaluru, have given me enough ammunition to say without a shadow of a doubt that `we scientists' are quite pleased with our lot. Not only that, we sneer condescendingly at members of the corporate world who sully their hands with the dirty business of money. We speak contemptuously of politicians. The aim of this article is to question our right to hold such exalted opinions of ourselves.

First, let me attempt a quick overview of how we spend our time and the taxpayer's money that is lavished on our `institutes of national importance' by our government. Depending on whether one works in a `research institute' or a `teaching institution', one is expected to spend one's time in doing research and in teaching/guiding Ph.D. students, or teaching students at one of several possible levels (B.Sc., M.Sc., etc.). The former are the more prestigious and better paying places (with better facilities), and they are the first choice of the more highly regarded scientists. Besides the above truly academic work, an undue amount of one's time is spent on administrative work, and how many such activities come your way is used as a sort of `impact factor' of how highly you are regarded.

A typically accepted form of evidence of such high regard is how many of our three Science Academies include you among their Fellowship. With such recognition comes promotions and in return for such recognition one spends most of the rest of one's academic life in one of the following activities: nominating younger colleagues to the fellowship of such academies, and later, serving on various committees of these academies which deliberate on how to identify a small subset of the set of nominees who will be elected into the fellowship of the academy in question. Depending on how highly you are regarded, you may be asked to help with the process of such filtration at the `sectional committee level' where a mathematician, such as I, will help decide which of our young mathematicians deserve to get into a `short-list', or you may be deciding at the level of the Executive Council of the Academy as to whether a mathematician from the short-list put up by his sectional committee is more deserving of the honour of being elected into the fellowship than, say, a biologist in the short-list put up by his sectional committee. (The kind of scrapping that goes on at these meetings, and the dubious logic by which a biological apple is compared favourably with a mathematical lemon, has to be seen/heard to be believed!) If successful, the poor fellow will be consigned to a life of playing this game all over, again and again, ad nauseum.

I have long felt that a more important role to be played by the various Indian Academies of Science should be to take the initiative and send strong and unambiguous signals in matters where the onus of leadership should be clearly be on the people we acknowledge as our top scientists. The point I wish to make is that while all of us sadly shake our heads at the unhappy state of affairs in our country, we ourselves seem to do precious little which is really constructive - nor do we take a strong stand and/or provide leadership when an issue comes up which requires some amount of scientific acumen to understand/evaluate. Let me give some instances to back my case:

  1. When there was a big furore over the introduction of astrology into the curricula of our universities, and when attempts were afoot to make the learning of Vedic Mathematics a serious part of the mathematical curriculum, none of the academies stood up to call a spade the spade that was begging to be called a bloody shovel.
  2. The exercise that our academies went through and the eventual document that was brought out on the desirability or otherwise of accepting the introduction of genetically modified vegetables, left many of us quite embarrassed to be known as scientists.
  3. Newspapers are periodically full of accusations and rumours freely using words like plagiarism, when some of the names being bandied about are those of past Directors of some of our most reputed research institutions and past presidents of some of our science academies.
  4. Leaders of our country go around talking about how our scriptures show that, even several thousand years ago,  we were adept at performing plastic surgery, as well as designing planes which could fly between countries or even between planets, and this pseudo-scientific mumbo-jumbo even extends to the scientific sessions of the `Indian Science Congress' with people `presenting papers' on such scientific anachronisms.

I realise I am putting my head in the lion's mouth, but somebody should put up their hand and mention the `nudity of the king'. The mere fact of my living a cushy life working at an institute funded  extremely well by the Department of Atomic Energy should really impose no constraints on what views I may personally hold regarding Kudankulam or the INO project. Just because some of the names bandied about as in point 3. above - possibly for `trivial' reasons - are among the most influential in Indian science today, that does not mean I should be wary of saying that the bigger the scientists, the greater will be the import of their saying `relieve me of all decision-making responsibilities until my name is cleared of this alleged infraction'.

Please do not get me wrong; I am not saying so-and-so was guilty of such-and-such. All I am saying is that it would be great `leadership by example' if such people can say `I resign from all these prestigious positions until all innuendo or potential blots on my name or integrity as a scientist
has been unconditionally wiped out'. Only then will we begin to have the moral ground to question the Jayalalithaas, Rajas, Kanimozhis and Gadkaris of our political scene!

Sunday, 21 December 2014

When will this trauma cease?

This is an open letter to the Director General of Civil Aviation as well as to the airport staff of Jet Airways and other private airlines. Can you please evolve a formula whereby I do not have to re-live the same trauma almost every time I fly. Unfortunately, that is the only way I can travel - not being able to get into trains or buses because of the ubiquitous steps that refuse entry to my wheelchair.

I must have taken more than a hundred flights with my wheelchair. The problem, you see, is that I use a battery-operated power-driven wheelchair. The DGCA as well as Jet Airways both make statements on their home pages of how people who need to use their own wheelchairs may do so provided they do not have spillable batteries. I have gone thrugh the same routine ad nauseum with our airlines, explaining that my wheelchair operates on a dry lithium battery, and that in fact, we always remove the key of the battery as well as the joy stick that operates the wheelchair before checking in my wheelchair, and that we have flown innumerable number of flights in this fashion, and yet, we often come up against these same oddball objections: (a) I am sorry but you must disconnect/open the battery; or (b) you need to pay so much money since your check-in baggage (including the wheelchair) exceeds the permissible weight - in spite of the home pages of both DGCA and Jet Airways clearly stating that people with mobility problems may have their wheelchairs carried by the free of charge! More than once, after we think everything has been satisfactorily explained, somebody had stopped us and insisted on my wife accompanying them to the wheelchair to `help disconnect the battery', and she did not get back before the airline staff started asking me to go ahead to the craft, as it is getting late, and that `she will join you' later. Given the efficiency they display with the handling of the wheelchair, I do not want to give them the chance to whisk me away, leaving my wife behind!

At the last leg of my flight, for the second ever time in my flying memory, we were permitted to collect the wheelchair from the hold of the craft, right on the tarmac, and use that to go to the arrival lounge. Also, on another flight I had to take this time, I saw, to my horror, the wheelchair come rattling down the luggage belt and crash into the bottom. It is not surprising that my wheelchair is not functional  now and has gone to the factory to get fixed up so I can drive it again. The machine just stopped working due to some loose connections caused by the airlines staff disconnecting all the connections between the battery and the motor, joy-stick controls, etc.

Is it too much to hope for, to ask to be issued a certificate by the DGCA or the airline concerned, stating that transporting my wheelchair is not a hazard, and that random yanking out of wires leads to great inconvenience and difficulties, as well as unnecessary anxiety - and most importantly, one which cannot be ignored by the airport security saying `their information/directive' demands that the wheelchair be subjected to theiir manhandling. Surely, it is not acceptable that I have to spend a few thousand rupees every time I get back home to get my friendly mechanic try and undo the damage suffered by the wheelchair.  

Saturday, 29 November 2014

Stamp of the bully

One sure sign of the bully is that he grabs the lion's share of what's on offer, and expects the `lesser members' of his fold to lump it and live with it; e.g.

  • a staggering majority of the world's wealth/resources is in the hands of a ridiculously small minority;
  • a majority of a state's budgetary allocation for its transport facilities is spent on taking more and more space for making more and more, wier and wider, roads, with the prime beneficiaries being drivers of private automobiles;
  • the larger cities, like Mumbai, Kolkata, Chennai and Bengaluru usurp the right to consume unreasonably and disproportionately large percentages of power/water and such essential commodities today, leaving essentially nothing for the rest of their state (Maharashtra, West Bengal, Tamil Nadu and Karnataka, in the cases at hand);
  • at a national level, decisions are made at capitals on matters affecting all citizens of the country, by having meetings of `stakeholders' who are invariably limited to one recurring cast of characters living in the capital, thereby making a mockery of the democratic process.

I am particularly distressed by one manifestation of the last example above. Readers of this blog do not need to be reminded about the history of the passage of the contentious RPD Bill of 2014. In the initial weeks of this year, some so-called `leading representatives' of the disability movement in the country, mostly from Delhi, in an unholy nexus with the `netas' of a floundering Congress party, tried to hastily push through this RPD Bill. It was a feather in the cap of the bullied poor relatives from outside the capital, that they perceived and highlighted the numerous flaws in this wannabe-bill, and got parliament to send this to a Standing Committee, so that it could currently be kept in cold storage till it could be reviewed properly after the new government had been voted in. Barely a month ago, opinions were sought from the public regarding the merits/de-merits of this Bill. Several people sent in well-documented and argued petitions to the SJ&E Ministry. After this farce of a democratic exercise, we read a recent gleeful boast in Facebook by one of the proponents of this Bill (from long before the time of the aborted attempt early in the year) that the Parliamentary Standing Committee will be holding its meetings to discuss the RPD Bill was set to meet on Dec. 2nd, and hopes to have the new law in place by January 2015! This farce of a democratic process needs to be exposed for its Delhi-centric and nationally unrepresentative way of passing ridiculously framed laws.

One would think that if a law was once attempted, in vain, to be pushed through, and if it came up for review, the people consulted would include some of the people who pointed out the shortcomings of the earlier failed version, and an attempt made to see
  • what the reasons were for its not having been passed earlier; and
  • what remedial measures have been adopted in the new draft to address the flaws perceived earlier.

When will we stop going back to the same bullies again and again, ad nauseum?


Is there any room for these barbarities the civilised country where:

  • people zoom through an intersection even when the signal is red?
  • people park their cars and motorcycles on pavements, blithely impervious to the inconvenience this causes by blocking the only possibly safe space for people to walk, disabled people to use their wheelchairs, blind people trying to navigate a safe distance from the ubiquitous automobiles?
  • or even worse, when the roads are full of cars stalled in a traffic jam, motorcycles start zooming on the pavements - assuming pavements exist and are even, with cutaways to easily get on to and off from the pavement?
  • it is not feasible to keep tactile tiles on pavements, since miscreants remove such tiles and take them away for god knows what use their perverted minds wish to put them to?
  • groups of disability activists have to periodically make access audits prior to making fervent pleas to  all and sundry to refrain from such inconsiderate practices that are constantly infringing on and depriving them of their rights to lead their lives independently, and with dignity?

  • people of all ages periodically throw plastic bags on the road after their contents have been used/consumed?
  • men unzip their flies and `let fly' in random public places?
  • close to half the population do not have access to toilets at home, and defecate out in the open - often on the banks of water bodies (even the supposedly sacred Ganges, Brahmaputra and Cauvery are not exempt from such pollution)? and people of `high castes' insist on doing so and forcing people of `low castes' to scrape this s..t off the ground and carry basket loads of such `night-soil', as it is euphemistically called, to dump it god knows where?
  • Whenever there are blocks in the sewage system, people of the same Dalit classes are `employed' to get into the sewers without any protection of any sort to unclog the mess,; not  week goes by without your reading in the papers that two or three such `cleaners' lost their lives due to having inhaled noxious fumes when they went down into the drains, AND that this inhuman practice of people diving into the s..t had been declared illegal some n years ago.

Yet, all these unholy practices continue unabated in my land with its fabled culture of several millennia! If this is civilisation, please give me the era of the caveman!

Sunday, 23 November 2014

A quiz for town-planners

Would you rather live in Kochi or Delhi? Cambridge or Birmingham? Los Angeles or Boston? Tokyo or Kyoto?

What is the common feature of each of the `winning cities' to the last question?

If land is constantly acquired for broadening roads for `easier commutes' for cars, what do you do when the whole nation has only roads and no more land?

If the only way to get from anywhere to anywhere (even just crossing the street like the proverbial chicken) is to get into a car and drive some three or four kilometres, what do you do when Mother Earth has been sucked dry of all her oil reserves by the increasing need of the SUVs and motor cars?

Have you seen the movie Mad Max?

How does a mother take her children to play in a green when all the green has become tar or concrete?

If the worship of wide roads even leads to motor cycles using the pavements (should they exist), where does one walk, or use a wheelchair, if one cannot do without such aids?

(This post is a response to the following depressing news of an endeavour begun by the same city corporation which has been periodically giving us tidbits in the newspapers about `reclaiming our open spaces' and `introduction of jogging and cycling tracks'.)

Saturday, 1 November 2014

A WDD with a difference

World Disabulity Day is apparently `observed' on December 3rd every year. This `observation' can be done in one of at least two ways:

(i) you could reserve one particular date on the calendar on which date, every year, you announce to the world that `some of your best friends are freaks' and on which date you will tell the whole world that everybody must be kind to freaks and strive to fill the world with `freak lovers'; or

(ii) you could tell yourself (and the world) that it is idotic to define some specific way somebody is different as `freakishness', realise that everybody is a `freak' in some way, and that the intelligent way to make the world a better place to live in is to revel in the existence of differences between us, and to strive for the ideal of `universal design' whose inclusive nature made no concessions for a design which singles out certain `freaks' for not being able to use that which has been designed in an inconsiderate and unthinking manner. (For instance, having a restaurant which can only be reached by climbing a flight of `only three' steps from road-level is a perfact instance of exclusive design which disallows clients who need to use a wheelchair.)

And there was this e-discussion between some people in my group (calling itself the DRA - short for Disability Rights Alliance) on how to utilise the forthcoming `World Disability Day' to clarify the distinction between the two perceptions/attitudes in (i) and (ii) above, when the following brilliant suggesstion came up: `gherao vehicles parked in such a way as to render pavements inaccessible'. (The freaky non-Indian reader of this piece should seek a `normal' Indian's aid in understanding what `gherao' means.)

(Thanks are due to my former student Madhushree for capturing the essence of my glee at the prospect in this cartoon she whipped up in a couple of days.)

This suggestion was just after my heart. Fortunately, enough members of DRA were happy with the idea of doing `something' about accessible pavements. In addition to several wheelchairs parked - preferably with occupants - encircling a motorcycle  or car parked across a pavement, I have fond hopes of executing one of my pet dreams (born in a freaky disabled mathemtician's mind, naturally) of parking my wheelchair right in the way of people trying to access a flight of steps - leading to a store or the ATM of some bank or any commercial place, with a `simple mathematical problem' (which would be totally incomprehensible to one without some mathematical training, but would be as simple for me as climbing those three steps would be for them) which people would have to solve before I would move my wheelchair out of their way, and pointing out that freaks ill-equipped to solve the problem unfortunately had no place in my world.

I await December 3rd with ghoulish desire - to see people's reaction to this world with roles reversed.