Thursday, 9 November 2017

Doctor

In the Indian Statistical Institute, when the honorific Professor or Doctor is used without a name following it, it always refers to its founder P.C. Mahalanobis or its leading statistician C.R. Rao, it being considered a sacrilege to suggest equating anybody else to one of these paragons. In my house, the word Doctor, if unqualified, always refers to Dr. Krishnamoorthy Srinivas, also respectfully called Chief or Professor in his Dept. of Neurology at the Voluntary Health Centre. Ever since I walked into his clinic after realising I had some neurological problem, I was captivated by him. On the one hand, his walls may be overflowing with his various degrees and assorted certificates, his table overflowing with photographs of various distinguished foreign doctors who visited his clinic, and he may seem to lose little time before letting you know of the prestigious schools and colleges he had studied at, and the rich and famous who have sought his expertise and help.

On the other hand, once you get past these superficial irritants, you discover you are in the presence of something rare that you cannot find for any amount of money: the very essence of the `family doctor', unfortunately a fast dying breed. The reason for this piece now is that he unfortunately passed away last week, and I want to sing his praises to the world. even if I have said some of this briefly in an earlier blogpost (in http://differentstrokes-vss.blogspot.in/2012/01/second-career.html, where I describe my first meeting with him as one of my main `life-changing moments'.) I want the several immoral money-grabbing charlatans that call themselves `doctors' today to know what goes into the making of an exemplary upholder of the Hippocratic Oath.

How many doctors today
* give you their mobile phone number at your first meeting and ask you to always fix up an appointment first, and are in their cabin at least 5 min. prior to the time agreed upon?
* give you as much time as you need, and never rush you to leave?
* always enquire about the other members of your family and their well-being?
* never bring up the topic of money, and when you insist on asking him how much you should pay for his time, gives you the name of his favourite charity to which you may donate as much as you wish?

Whenever any of us (in my immediate family) required to consult a medical specialist of any sort, I would ask his advice. I still see an eye specialist recommended by him. Just two weeks ago, I needed an orthopedic specialist about a broken arm but Doctor was unfortunately not in the best of health - and yet he sent a name and a mobile phone number to my wife through his wife. When I saw that doctor, I could see he was of the same vintage. When I mentioned the indifferent health of Dr. Srinivas, he said `but I saw him just the other day in the Club'. The happy resolution of my orthopedic problem turns out to have been a parting gift from Doctor to an ever-appreciative patient of 17 years' standing. It appears that I can no longer postpone addressing the question of what I would do with my MS when I can no longer stop by his ever-welcoming room at the VHS. You will be missed so much by so many people in so many ways, Doctor!

Wednesday, 11 October 2017

bE  inclusivE

I first learnt the word `inclusion' in the context of set theory in mathematics. Here are two definitions that I'd like to see someone make some of our netas in Delhi write 100 times as an imposition.

A set (or collection) A is included in a set B if every member of A is a member of B.

Two sets A and B are equal if each is included in the other; i.e., they should have the same members.

For example, the set D of residents of Delhi is included in the set I of Indians. However, I is not equal to D since there are some members of I who do not have the good fortune of inhaling the polluted air of Delhi on a daily basis and instead live in `remote places' like Mumbai, Bengaluru or Chennai and are thus not members of D.

Some people are, however, still under the erroneous impression that I is equal to D. In case you are curious about why I am going on in this fashion, I will be more than glad to elaborate. As I do, you will find repeated confusing of I with D by members of D.

To start with, let me remind you that I spend a fair bit of my time being concerned with the work of a group calling ourselves the Disability Rights Alliance (DRA in the sequel). My friends in this group are largely from Chennai. All of this must be repeated ad nauseum, since we seem to be invisible to some of the more prominent disability activists in Delhi. For instance, a horrendous RPD Bill was almost passed in 2014, but many of us from DRA were at the forefront of a concerted campaign to bar the passage of this bill and in having it referred to a Standing Committee. This same Standing Committee almost fell into the I=D fallacy, and a further social media barrage from many of us made them avoid that error and come down to Chennai and another city in South India. They listened to our carefully prepared presentation and incorporated many of our suggestions in the report they gave the Govt. Unfortunately, the Govt. almost completely ignored that report and passed an RPD Bill - 2016 which still carried many faux pas of the 2014 precursor - and one of the oft-quoted Delhi disability activists was quoted by the press as hailing this landmark decision - even as many of us rued its divergence from the UNCRPD, in word and spirit.

And now I shall come to the Fall of 2017. Last month, we came to learn that the DG of CISF (Director General of Central Industrial Security Force) was going to be attending a meeting in Chennai. Now there had been many horror stories about indignities suffered in air travel by PWD, and CISF is in charge of security in airports. I was asked to pursue the possibility of some of us presenting our woes to the DG. After many emails and phone calls, I cajoled them into letting us present our point of view. That attempt saw the DG seeming to be very sympathetic and pro-active, going to the extent of asking me to send his office a copy of the presentation I had prepared of our points of view.

I followed this up with two or three mails where I pointed out at least two instances of passengers with disability suffering insensitive treatment at the hands of the security guards, and saying the time was ripe for a team from CISF and a group of disability activists to sit together to iron out their differences. Imagine my surprise at receiving an email on Oct. 4th, inviting me to exactly such a meeting on Oct. 11th. I wrote back saying nothing had been said about who would pay my airfare, and that it was clearly not proper for decisions to be made which would affect all Indians, with such decision-making being based only on opinions of Delhi-ites. To this, I got another email saying airfare could not be paid to people coming from outside Delhi, and suggesting that I provide them with names of some people based in Delhi. So I send desperate emails and phone calls to my PWD friends in Delhi to ensure our concerns would be well represented.

India is one of the most e-literate countries, and there is no excuse for not having this and all such meetings Skype enabled so interested people from any city, not even necessarily in India, can participate in them. There is absolutely no justification for excluding people on the basis of the city they live in, especially when technology makes it so easy to be e-inclusive!

I just heard yesterday's meeting went off quite satisfactorily and that a follow-up meeting is scheduled, which will be graced by the Minister of MSJE, and more importantly, will be accessible by skype to members of I-D! If this had been the case with yesterday's meeting, I could have been part of it from the comfort of my own study, and there need not have been all this tension and disappointment.

Wednesday, 6 September 2017

We invite and piss on our teachers

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?

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(*) The fact that he passed the buck to the Vice-President this time makes him doubly guilty of lack of guru-bhakthi!

Sunday, 20 August 2017

Crying Need

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!

Sunday, 30 July 2017

My beef with architects

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.

My gripe with architects is that their idea of aesthetics seems to almost demand lots of steps and consequently inaccessibility to a wheelchair user such as I! I have long carried on (e.g., see my blogpost http://differentstrokes-vss.blogspot.in/2012/01/ingenious-hurdles-to-access.html) my quixotic joust with the architects who build these sadistic `windmills'. Another of my blogposts http://differentstrokes-vss.blogspot.in/2012/06/whither-universal-design.html talks about our National Institute of Design which is like something out of a nightmare of a wheelchair user.

This conviction of mine that accessibility is a blind spot for architects - in fact even that advertising this blind spot is almost necessary for being considered a good architect - was brought home to me with a thud when I saw a list of what were considered among the best recent constructions in
http://www.earthamag.org/stories/2017/7/24/not-just-another-brick-in-the-wall-10-indian-architects-who-are-building-sustainable-homes

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?

Monday, 3 July 2017

Citizen Protection Act

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.

Saturday, 17 June 2017

Imagine what if ...- just for all those people

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!