Don Quixote tilting against windmills on the long-suffering Rosinante,
trying to save damsels in distress from imaginary ogres; or me jousting
with an exclusive environment on my battered wheelchair to try and give
people with disabilities a fighting chance. Who is crazier?
This is an open letter to our Prime Minister(*), and people who organise functions in Vigyan Bhavan to honour respected teachers, and achievers in other fields. Can you imagine greater disrespect than for Arjuna to invite Krishna to pay homage to him and then have him informed that all sarathy's should use the rear entrance? What Vigyan Sadan doles out to its teachers and other achievers - at least those that are unfortunate to have a disability - is that same manner of disrespect. The latest such instance was the day `honouring teachers'. As Shradha Chettri sayn in her piece http://indianexpress.com/article/education/at-teachers-day-event-no-ramp-for-differently-abled-to-reach-stage-4830650/, this is at least the third instance of such flagrant violations of the RPD Bill by the organisers. What happened to Sugamya Bharat Abiyan, Pradhan Mantri-ji, which you have gone on record to call your `pet scheme'? Is there a date after which Vigyan Bhavan and similar inaccessible horrors handed down to us by our British masters have to start being accessible, or face consequent penalties? I can't wait for the day when I can sue these white elephants which bring shame on everything scientific. Watch out, Vigyan Sadan, JN Tata Auditrium and IISc - you are high on my `hit-list' When can I give documentation and demand action from the Accessible India Campaign?
(*) The fact that he passed the buck to the Vice-President this time makes him doubly guilty of lack of guru-bhakthi!
Yesterday, I attended a meeting at Vidya Sagar, initially scheduled for 1030-1330. Many convincing points were raised, many obviously pressing considerations were brought up, but the issue is so large that no definitive conclusions could be reached nor could `to do' lists be drawn up. I unfortunately had to leave as it was already almost 1400 and there was no sign of some sort of consensus being reached any time soon. As though to punish me for my inconsiderate and rude behaviour, the elevator stopped almost as soon as I got in and it started moving! After repeated attempts to ring the alarm bell, I was finally `brought down'. After thinking about it, I felt I should try to make amends and try to raise general consciousness on the issue at hand.
The subject of the meeting was `supported decision making for persons with typically psycho-social or intellectual disability and even those with `high support needs'. If you think about it, most institutions for persons with disability were founded by a parent of a child with disability, eg., the Association of People with Disabilities (in Bangalore), the Spastic Society (in Bombay), Vidya Sagar (in Chennai), ... The over-riding concern/worry of N.S. Ayyangar, Mitu Alur and Poonam Natarajan would have been how the child would fend for herself/himself when the parents are no longer around! Much of yesterday's discussion centred on such worrying facts as: the `child' may not even be aware of money-management, or even permitted to open and maintain a bank account in view of our sloppy attempt at writing an India-specific version of the UNCRPD! The mind boggles at the magnitude of the problem of setting systems in place to help such `children' (who would likely be fully grown adults when confronted with the situation outlined).
There is a cousin of mine whose parents are no more, but fortunately, a trust was put in place by his father, manned by his son's siblings and their spouses, which was endowed sufficiently handsomely to ensure that his son's needs would always be taken care of - and fortunately there is no joker in the pack with the need/greed to misuse the funds set aside for running this trust. Since not everybody would be so fortunate, it seems natural that each such `child' must be able to have a body of trusted friends and relatives to orchestrate the necessary infrastructure to ensure a `normal' life, without fear of being taken advantage of by crooked members of his/her trust. The need to set desirable systems in place for every such `child' is the crying need of the hour that the group at Vidya Sagar attempted to make a dent into at yesterday's discussion. This is the sort of task that should be taken up seriously by our Ministry for Social Justice and Empowerment, rather than renaming themselves using the term Divyang-jan - by which artifice they divert the problem-solving to the divinity with which they portray the PWD they should be serving!
Why can't MyGov take a serious step in this direction? Most importantly, get inputs from the stakeholders before putting up a faulty system in place!
Let me clarify something at the very start: I have nothing against architects; I have architect-relatives of many hues: brother, cousin (late, still living), son/daughter of of cousin, and so on.in short, to use a PGW-ism, you can't throw a cat at a family gathering of mine without it braining an architect or two.
I keep ranting and the architects keep saying `there,there', as if I were a little child throwing a tantrum! How I wish Frank Lloyd Wright and Le Corbusier had been locomotor-challenged! Will somebody please take me seriously?
It is high time we had a `Citizen Protection Act' along the lines of the existing `Consumer Protection Act'. According to Wikipedia, the latter is an Act of the Parliament of India enacted in 1986 to protect the interests of consumers in India. It makes provision for the establishment of consumer councils and other authorities for the settlement of consumers' disputes and for matters connected therewith also. When you can demand satisfaction for goods you purchase, it stands to reason that you should be able to demand satisfaction for taxes extracted from your hard earned wages.
Quoting such an Act, I would ask our Finance and Prime Ministers to justify why I (and other similarly deprived PWD) should pay taxes for:
broad four lane highways which are rendered impossible to cross by such devilishly devious hurdles as four foot high road dividers, no pedestrian crossings rendered safe by traffic lights with a green option for pedestrians, and sadistically designed foot-bridges reached after climbing some forty steps?
buses, trains and metros which are uniformly unusable by a wheelchair user or a visibility impaired person?
roadway systems where pavements, in the rare instance that they exist, have to be shared by scared pedestrians with two-wheelers tearing down at breakneck speeds.
Armed with such an act, I would also
ask our MSJE why the entire ministry has not stood as one to protest the obvious and unfair implications of imposing GST according to inscrutable reasoning where agarbattis and sindoor are taxed almost nothing while prosthetic aids, crutches, wheelchairs and braille paper are taxed far far more heavily (rather than spending their energies on `fake news' about Kohli and Kumble throwing the final of the Champions Cup Trophy against `arch enemy Pakistan');
point out that the implications of GST to PWD are akin to encouraging Jaitley and Modi to pray to the accompaniment of all Hindu rituals while taxing them to walk or write; as Amba Salelkar quite rightly says in an article in Scroll, the state would do well to question its imposing taxes on PWD who are, ever so often, denied facilities that it extends to its `non-special' people (those not gifted with Divine powers and worthy of the title `Divyangjan')!
ask our `leaders' to own up not taking any action about the sorry state of affairs in our country where you are fair game for a grisly end if you are a Muslim or a Dalit; from carefully expressed sense of horror by respected public figures (see https://sabrangindia.in/article/memories-buried-deep-have-come-back-haunt-me-aruna-roy) to spontaneous outbursts by citizens across the country (with slogans like `not-in-my-name') it is increasingly clear that all but the RSS bhakhts writhe with shame and anger at this state.
This piece of make-believe fiction was born of a silly family whatsapp discussion. My sister-in-law commented that the job of the President of India was falling vacant in July in case somebody was jobless and interested. It so happened that I had formally retired from my position as senior Professor of mathematics just a few weeks earlier; so i responded `hey, I am jobless', and what followed was some tongue-in-cheek promises of promising support in the event of not being a competitor.
As days went by, and as I saw the names that were being touted for possible candidates for the post, I started indulging in some day-dreaming, listing the pros and cons of the prospect of `putting in my application' for the job. By an odd coincidence, nearly the same fact was at the top of both lists, viz. the implications of and for my multiple sclerosis. Let me elaborate the lists as I see them, starting with the cons.
I have become increasingly locomotor disabled, having spent the last month trying to make our residence, which has been home for almost 15 years, accessible. My disease leaves my energy levels depleted most of the time, so much so that my wife and I had decided to minimise, maybe even altogether eliminate, travel. One of the many reasons I have wanted to not even think of moving out of Chennai is that my doctor lives in Chennai and he has shepherded me through many phases of MS with an utmost comforting and soothing manner; and I would never want to forego the security of his proximity.
Now for the pros. If the Indian president was essentially wheelchair-bound, the promises of rendering our country accessible can finally become reality. Magically, ramps and elevators will sprout everywhere. And even Air India will be forced to allow a PWD to take his own wheelchair into the plane, and to make sure that such wheelchair is available for its user when needed on arriving at the destination (unlike several horror stories that have been reported in our national newspapers of the wheelchair not being found at the destination!). Implementing the aims of the UNCRPD will be a breeze. And I wil have occasion to tell a potential Presidential candidate, Mr. E. Sreedharan, of the NDA, that with his Metro, a last possible hope, of travel on public transport by PWD, has gone down the tubes - by showing him the records of DRA's attempts to engage CMRL over several years, that have been meticulously preserved by Vaishnavi.
And now to answer the inevitable question of why anybody should consider my `job-application' seriously, I can trot out the list of winners (which also includes me) of awards such as Nobel Prizes, Magsaysay Award, Padma Awards of all hues (Shree, Bhushan, Vibushan), Shanti Swarup Bhatnagar Prize for Science and Technology, that have been periodically turned out by my extended family 9going up to grand-uncle and grand-aunt!) After all, ours is a nation where people are made rulers because of their families! In terms of preparedness for the job, I am also a scientist, not unlike Abdul Kalam. I could then go on to enumerate my own achievements in mathematics and social awareness building of the plight of PWD.
Finally, at a time when one hears ominous slogans like `United States of South India' and echoes of the old `anti-Hindi' sentiment, it would be a good idea to opt for a person who can't speak Hindi to save his life, and to give a semblance of an assurance to the southern states that non-Hindi speakers are still very much a part of the fabric of the Indian tricolour. This is obviously not a carefully thought out idea (or job application) of mine; I do not want people to take me too seriously and mock me for even thinking of this as a possibility.
On the other hand, just think what this would mean for the several millions of PWD in our country - a measure of how seriously their plight is taken by our Govt. being indicated by their calling us Divyangjan, while they have not given a moment's thought to finding out just how many such divine creatures there are! Just imagine what a PWD in the Rashtrapathi Bhavan can mean for the lives of the undetermined number of our divine PWD!
Is it the Indian ethos that we always give the job to politicians and not to professionals? Let me begin with the glaring example of Indian cricket: around 1950, maharajas and bureaucrats were entrusted with leading or selecting teams, and I do not believe India ever won a cricket test, leave alone a test series. We have come a long way till we left such serious matters as selection of teams or captains to professionals. The path from the Maharajkumar of Vizianagaram (or Vizzy, as he was known) to Dhoni and Kohli was possible only after matters of selection were left to people who really played and knew cricket like Gavaskar and Kapil Dev. By adopting this obvious change in methodology, the Indian cricket team was transformed from a laughing stock to world-beaters.
In contrast, you just have to look at our squads for the Olympics. Once every four years, we suffer the embarrassment of being the squad more than 50% of which consists of fat administrators who have probably never played anything; and the `bare'ness of our cupboard of olympic tallies reminds you of Old Mother Hubbard's! The fate of hockey and tennis are also similarly dismal.
Now let me remove the kid gloves and come to the point. The people that this letting off steam is directed at is our various Government bodies `entrusted' with realising the promises made to the PWD (Persons with Disability) about giving them their rights and due.
To put it simply enough for your limited powers of comprehension, here are some instances of how you jokers are pulling a Vizzy on us:
* According to the Wikipedia, The NITI Aayog comprises the following:
Prime Minister of India as the Chairperson
A Governing Council composed of Chief Ministers of all the States and Union territories with Legislatures and lieutenant governor of Andaman and Nicobar.
Regional Councils composed of Chief Ministers of States and Lt. Governors of Union Territories in the region to address specific issues and contingencies impacting more than one state or a region.
Full-time organizational framework composed of a Vice-Chairperson, three full-time members, two part-time members (from leading universities, research organizations and other relevant institutions in an ex-officio capacity), four ex-officio members of the Union Council of Ministers, a Chief Executive Officer (with the rank of Secretary to the Government of India) who looks after administration, and a secretariat.
Experts and specialists in various fields 
With Prime Minister Narendra Modi as the Chairperson, the committee consists of
Special Invitees: Nitin Gadkari, Smriti Zubin Irani and Thawar Chand Gehlot
Full-time Members: Bibek Debroy (Economist), V. K. Saraswat (former DRDO Chief) and Ramesh Chand (Agriculture Expert)
Chief Executive Officer:Amitabh Kant
Governing Council: All Chief Ministers and Lieutenant Governors of States and Union Territories
Query: How many of these members have a trace of a connection with disability? Will they know one if it hit them in the face?
* There have been no end of pleas on our part that they have some PWD on their planning committees. Nevertheless, we are always presented with a fait accompli with deficiencies that would have immediately been spotted by a PWD. You just have to look at Vaishnavi Jayakumar's documentation of DRA's attempts at making CMRL (Chennai Metro Rail) think about making the metro accessible - and not screw up the last chance of having at least one means of public transport usable by PWD. When we finally did get a chance to take a look of the initial stretch from Alandur to Koyambedu, our worst fears had been realised : gap between train and pavement, toilets being totally inaccessible, ...
* I recently learnt (from one of Vaishnavi's emails, naturally) of something called Pre-Legislative Process (PLP). I am mentioning below a few pertinent links in the hope that people in our Government will involve and take the opinions of the people for whose supposed benefit they are attempting to enact a law. Even if some of the PLP considerations came into being at the behest of the erstwhile UPA Govt, these suggestions make sense. (e.g.., Pre-legislative scrutiny is a first step towards greater transparency in law-making.) Please do not ignore these links out of sheer cussedness!
This morning is the first Saturday morning of my `post-retirement life', and I can already see myself becoming one of those grumpy old scrooges who gets irritated with everything. Something to do with people not letting me lead my life the way I want to, constantly asking me to update my life and then rendering it unrecognisable and unfriendly. Let me do a slow rewind, starting with `the stone-ages' and fast-forwarding to today's land of highways and information fast lanes.
When I finished a masters degree 44 years ago and went to foreign shores to do my doctoral work, I flew in a plane for the first time from a country where there was no television; where bicycling from home to the place of study (school or institute) was normal and feasible under half an hour; it was not uncommon to find a home with no phone; if you wanted information not available in your text books, then you cycled to a library, you had to find a plausible source of the desired information, possibly in the `reference section', and then copy down the desired information in a note-book - Xerox machines were still a decade away; and if you wanted to communicate with somebody in a different city or country, you had to write a letter, mail it, and await your response which could take some weeks to come. Despite this seemingly unnecessary self-denial, it did teach you to write well in order to communicate clearly and unambiguously. You did not say `how r u' or `lol' or `wtf'; these abbreviations are abrasive, often rude, and lead to entirely unwarranted misunderstandings - especially when they make up the fabric of conversation between people of different generations with different ideas about acceptable norms of behaviour! My first book was written in (an India-USA) collaboration with my (already former) thesis advisor in that era of `snail mail'; but thanks to his being from a generation which constantly honed its correspondence skills, that is probably my only totally error-free book.
With the advent of computers, much less time is spent on real work - what with constant beeps announcing some `notification' or the other that only serve to take your mind off what it was (and should have been) involved with; and the death of the reading habit was slow and inevitable. (How many kids of today even visit libraries; even book shops and libraries are inevitably filling their shelves with electronic items at the cost of books. When mobile phones first made their appearance, I postponed getting (dependent on) one for as long as possible, convinced they only lead to waste of time. When it could be postponed no further, I got one of those old thin and small phones you could hold and operate with one hand, where you used the phone keys for texting with `1' yielding `a',`b' or `c', with the `prediction' option kicking in as you typed more of the word.
This smartness seems to force you to (a) use large phones which do not fit easily into a hand or a pocket, (b) use two hands to receive a phone call, and (c) generally make the act of using a phone when vertical difficult if you have balance problems like I do. Also using the small QWERTY keyboard is tough if you have clumsy fingers like I do, so sending/responding to text messages is a major hassle. Then came smart phones which outsmart you by periodically asking, nay, persistently demanding that you `update' (now/overnight/later) your phone and revealing its new avatar after uploading, with many of the old options replaced by new and sometimes unfriendly ones! You can't keep on opting for `later' because the frequency of these demands increase exponentially, and eventually something does not work because you have an `old version'!
There is a pattern, in all walks of life, to this frantic desire for modernisation. For instance, the government tells you they will improve infrastructure (read `roads' - even though at least two people die every month due to going into the shit-filled sewers of our cities to try and de-clog them). Instead, they will try to widen roads, chewing up any pavement on those infrequent occasions when they might have existed; then they will build a road separator, which will keep growing taller periodically, thus ensuring people cannot cross the streets; then they will remove all intersections and pedestrian crossings, thus ensuring that senior citizens or people with mobility problems can live in the cities only if they can travel in private cars; then they will threaten to build monster flyovers spanning several miles, whose construction will shamelessly and irreversibly cut down trees everywhere and reduce green cover. Never mind: just turn up the air-conditioner in your car!
What my mood needed to go over the top was this email from my DRA friends about
NITI Aayog's three Year Action Plan for Persons with Disabilities
The document talks about making a section of each class room accessible as per universal design standards in next 3 years. 3 years and just one section in each class room? It also mentions making just 10,000 buildings accessible in the next 3 full years?? Including the plan made under Accessible India Campaign that is been carried out so far?
Secondly no mention about any new programs like personal assistant program or supported decision making units. No attempt for the appointment/deputation of an inclusion focal point within NITI Ayog.
Last but most importantly, the action plan PDF as released by NITI Aayog, which is attached alongside, is not accessible for persons with print disabilities.
Yes Pradhan Mantriji, this report will go a long way in assuring your favourite Divyangjan that there is positive probability that your ministry may manage, by the year 2100, to have one school that is truly accessible and manage to maintain a state-of-the-art Resource Centre, be a repository of research on good governance and best practices in sustainable and equitable development as well as help their dissemination to stake-holders (point no. 10 in the stated `Functions' of this organisation according to Wikipedia).