Monday, 12 September 2016

Shades of perceptions


A physics professor friend of mine drew my attention to an article posted on the internet (at http://nirmukta.com/2012/10/11/no-country-for-wheelchairs/) which was just music to my ears. He started the email carrying this information with almost an apology for possibly overstepping his limits by mentioning my column/blog devoted to almost exactly the same circle of ideas (in the comment he had posted on that article)! 

The author (of the article posted on the internet) sets the ball rolling with the astute observation that most people might have trouble remembering details of just how the entrance to a known building looks, while people with disabilities have to notice and shelve in their memory various details which are of prime importance to them. And he then sets about describing the almost uniformly inaccessible (to wheelchair bound people) nature of the posh 100 feet road in Indiranagar, Bangalore. His article is replete with photographic evidence of this lack of accessibility.

Let me not deprive you of the pleasure of reading its contents by presenting a half-baked summary of that article.  Instead, let me dwell on the different levels of sensitivity exhibited by the perceptions of different people who have posted comments on this site. One reader comments that in order to take any action as was done by the author, one requires only a raised awareness and that the article in question pooh-poohs common excuses such as lack of time or resources. My physicist friend Professor Balakrishnan rightly points out that `most of our streets and shopping areas do not have proper access for ANYBODY who is not really athletic, owing to encumbrances, encroachments, rubble-ridden “pavements”, haphazard parking of vehicles, just plain decades-old junk strewn about, etc. etc'.

And then there is the reader who argues that it is not important how steep a ramp is, so long as there is a ramp because (he says, and I quote:) "most of the handicapped people in India use a bit of help from the public in any case. If not the public, security guards/establishment staff will be eager to help clients, from what I have seen. At least, family members/friends with whom they have coffee with at Coffee Day. Even without ramps, people in wheelchairs are carried palanquin style across steps in most places in India." At one fell swoop, this argument `arrives' at the conclusion that people with disabilities should just be happy to exist so long as they have relatives and/or friends who are prepared to unceremoniously carry them like a sack of potatoes (a la palenquin}) wherever they want to go. Why, it might go on to ask, would a person with disabilities be so silly as to expect or hope that society might allow him an iota of dignity on some day at some place?

I find this thinking ingenuous and dangerous as it fails to recognise the right of people with disabilities to be able to benefit from various public resources without having somebody along to enable them to do so? Does a person's right or ability to enjoy a beautiful concert have to have anything to do with being blind or crippled? Are such people entitled to enjoy such beauty only if there is someone else to enable them to do so? When a `normal' person has no such constraints, why should an `abnormal' person be penalised for not `being normal'? Should we `abnormal' people just pack up and wait to die, or are we allowed to hope for as close to a normal life as is consistent with our `abnormality'? The word `abnormal' has advisedly been consistently used in quotes, as that is not the politically correct word to use in this context. The phrase `people with disabilities' is used not euphemistically, but positively, in recognition of the basic rights, independence and empowerment that it connotes.

Sunday, 28 August 2016

Super-moms

The reader of this blog would know that I try and get together with `DRA' periodically on matters related to accessibility, inclusivity in society, etc, in short, on disability activism. One of the members of this group has started on a project, which involves meeting on the `Beach Road' in Besant Nagar every Sunday morning from 06.30 to 08.30 when cars and bikes are prevented from using that road, where she aims at sensitising people on the merit of, and crying need for, inclusivity in our society.

I have been giving this a miss so far since my driver had recently become a father, and I did not want to disturb him at least on Sundays. But this time, Bhavna had promised to create a history - on posters - of disability awareness and support in Chennai; and she had got Ms. Poonam Natarajan to help trace the history of inclusivity in Chennai. And this I really had to see, so I requested Sekar to take me and my wheelchair to `Bessie'.

I did not expect anything less from Bhavna: everything was done with impeccable taste and clarity. But this post is not about her. You can read about her in, for instance, http://www.thebetterindia.com/4655/tbi-inspirations-she-cannot-walk-talk-or-write-but-young-bhavna-botta-is-a-successful-entrepreneur/

I want to write about something that struck me tangentially, as it were, and that I wanted to share. Everybody has heard the sexist condescending statement that `behind every successful man there is a woman'. I thought, instead,  of the fanatastic `never-say-die' mother behind every person who has overcome terrible hardship to even have a chance of a reasonable life.

I saw at least four of them today who, in their own ways have contributed to making this world a far better place than they found it: Poonam Natarajan, Kalpana Rao, Sumithra Prasad, Mrs. Sadasivan (whose own name I am ash amed to say I have never heard or known). All of them were faced with alarming news about a child of theirs having a life-long health condition that might prevent their leading the typical care-free and happy life everybody prays is in store for their children. And they politely asked Fate to go to hell, and set about giving their child the life of their choice.

These women would not be cowed down by a cruel fate. Not only did they try to help their child face their problem, they gave something to society that can only come from one who has unergone a trial by fire.The actual nature of the health problem of the child is not pertinent for this post. What does matter is that in spite of hours of lost sleep due to worry and hours spent at the doctor's, through their support of their child, they have, by their strength and courage of conviction, helped set up systems which will help many future children suffering the same fate as their child.

Poonam akka gave us what is now called Vidya Sagar (and originally, the Spastic Society of Chennai), Sumithra Prasad (who got today's event going with a great spirit of positivity, introducing herself as a special mom of a child `with special needs') started her SAI bakery, about which you can read in http://www.thebetterindia.com/22773/sai-bakery-chennai-adults-with-special-needs/>, while Kalpana and Mrs. Sadasivan have given the world Bhavna and Smitha, two of my live-wire friends from DRA, both of whose energy levels leaves me panting. I have only seen Bhavna's mother when her services were needed to communicate with Bhavna. Today, I walked up to her and congratulated her, and she dismissed it in her disarming and self-effacing manner, saying it was all Bhavna's doing. She was referring to this event and I was referring to having helped Bhavna become the woman she is today. I feel the same way about Smitha's mother, as Smitha herself has mentioned many times when interviewed by the Press.

Which leaves me with the thought that if most mothers - and fathers -  would instinctively remove a barrier in the way of their child, why is it virtually impossible to make this world accessible and inclusive towards people with any kind of disability? The same `us and them' garbage that is thrown around by the Trumps and Hindu fundamentalists of the world!

Tuesday, 16 August 2016

What is this thing called independence? (Apologies to Cibber)

I just want to describe a normal day in my life in independent India. As my apartment is not really accessible to my wheelchair, my going and making myself a cup of hot coffee in the morning is not really too comfortable. In fact, doing anything in our kitchen is quite an effort, so usually my wife sweetly does everything - from cooking to cleaning up afterwards. And because my fingers are not particularly supple, I even need her help for opening plastic wrappers or the foil in which tablets are packed; so I have to leave that as just more of those things she has to do for me. But my wife does it unquestioningly and affectionately.

The next phase, after I have somehow managed to bathe and clothe myself, is still not so bad. When I need to go to the institute to work, my driver Sekar comes home, and I need his hand as well as the crutch in my right hand to hobble downstairs to the car. We get to the institute and Sekar drops me at the institute gate (where I have this arrangement with the security guards, whereby they have previously been told by when I will need the battery of my wheelchair charged). I hobble from the car to the wheelchair, and drive across to my office in it, and am able to function with a modicum of independence. I do have some troubles, however, with the recently constructed guest house canteen which has its share of (i) dining halls which allow very few possible spots where I can sit in my wheelchair and eat, and (ii) doors which automatically swing shut or which are bolted so I can get through only if somebody holds the door open for me.

And if I have to go out somewhere (to eat, for instance), I need Sekar to disassemble and then load my wheelchair in my car to take us to the restaurant. And now if that restaurant is not in a five-star hotel, you can be almost sure that there will not be ramps to permit a smooth ride. (And this is after Sekar has taken my wheels out of the trunk, reassembled it, and assisted me from the car to the wheelchair.) More often than not, some number of steps will have to be negotiated while somebody assists me (typically by grabbing some part of my body without bothering to ask me if I need assistance, until I have passed the steps).

And I am able to do even this much only because I can afford to have a car and immensely resourceful and helpful driver. Now if I was not so fortunate and had to use public transport, I'd have no choice but to sit at home all day and drive myself and everybody around crazy.

And Shri Modi, our Prime Minister, you who seem to have no trouble in having access to my phone number to send me a message `wishing me a happy independence day' and giving me a link to where I can hear you speak on the occasion! How do I get to write to you to tell you that I hope you can have a taste of the frustration of a totally dependent existence which one need not have if only our rulers took their commitments to being signatories to the UNCRPD a little more seriously? Have your appropriate ministries pay attention to the hundreds of things they need to do rather than invent new names for existing ministries which lead to new ways of not completing the pile of tasks needing to be done. You who are supposed to `get things done', please subject each bureaucrat/minister in MSJE (which you are attributing divine powers to) to spend the first month in office by alternatively having to move only in a wheelchair, or walk blindfolded, or with their ears completely stuffed so they cannot hear anything. In short, it is time for all you glib talkers to WALK THE TALK.

And you want to know something? That which robs me my independence is not my physical condition due to having contracted Multiple Sclerosis, but the barrier-ridden environment and the exclusive mind-set of the citizens of India (or Bharat, if you prefer that).  It is not just the rich and `advanced' countries like USA or UK which permit people with disabilities to function with total independence. My recent visit to Bali in Indonesia showed me that even countries where our Rupee is not an insignificant amount of money showed me that you can be generous and inclusive in even such a country. So, as a great man once said, `LET MY PEOPLE FREE'. 

Monday, 11 July 2016

Accessible India - a pipe dream?

A few days ago, the Economic Times in India cited this news item, whose second pargraph has the telling line which describes `Accessible India' as the Prime Minister's pet initiative. (If this is the status of his pets, imagine the plight of his not-so-favourite people/animals!)

If you want to make a study of status of educational institutions in India, wouldn't it be a good idea to study practices of the more successful ones (like the Indian Statistical Institute or IIT, Mumbai) rather than confine oneself to the self-financing colleges of Tamil Nadu? I hear that the study cited above only refers to buildings in a list prepared by Accessible India Campaign.

When I asked around, I found that the Govt. has adopted a typical bureaucratic and unimagintive procedure doomed to failure. The Govt. asked the State Govts. to give a lit of the most frequently visited public buildings. The Auditors were selected through a bid by the Government on the basis of their experience and competence.

On the other hand, imagine a scenario where an imaginative photographer makes a five minute walk through video of Arushi, Bhopal and Vidya Sagar, Chennai, and follows that up with inaccessible metros and reilway stations; and then draw up a list of respected people in the field (Anil, Vaishnavi, Shivani, Anjlee, and NO ministerial type, maybe a respected IAS officer) to draw up a game-plan. That will make the task at hand clear as mud.

For instance, I just received a message on WhatsApp about 350 `no-frill airports' coming up at one shot. (What we do not want is a mindless repeat of endless inaccessible elections. Recent experience shows that if there was any improvement in the recent local elections, it was because of the initiative shown by vaerious groups of PwD.) Immeditely, there was a flurry of messages on WhatsApp by `the community' suggesting ways and means of creating an `accessible airport template manual or the Aviation Ministry to send out to these 350 airports'. (One has to just compare this with the desire and urgency shown by the Gehlots and the dignitaries of the Divyang Ministries to do something similar before another opportunity goes down the drain.)

Monday, 27 June 2016

A math lesson for disability rights 

I want to give a sermon on the two ways - one good, and one not-so-good - of doing something on a large scale (from the pulpit of a mathematician to `social justice' ministries). So I request your forbearance while I start with a little high school mathematics.

Write C(n,r) for the number of teams of r players that can be made from a population of size n, where r is a whole number no larger than another whole number n. There is a scary/ugly formula which counts this number. For example, C(8,3) is the ratio (8x7x6x5x4x3x2x1)/[(3x2x1)(5x4x3x2x1)]; in general if we write n! (read n factorial) for (nx(n-1)x(n-2)x...x3x2x1), then C(n,r)=(n!)/[(r!){(n-r)!}].) Coming up with clever and elegant ways of solving such potentially horrendous`counting problems' is the delightful area of combinatorics.

Let me begin by discussing the equation:  C(n,r)xr = nxC(n-1,r-1). The right way of seeing this equation is as follows. (and the inelegant way is to use the formula with `factorials' discussed above.) Imagine that the task in hand is to see how many ways there are of choosing a team of r players out of a population of n, and select a captain to lead that team. There are (at least) two ways of finding the answer: on the one hand, you can first pick the team (in one of C(n,r) possible ways), and after that, pick one of the r players of the team you have chosen as captain, hence arriving at C(n,r)r as the desired answer; on the other hand, you can choose one of the n people in the land as captain and then choose the remaining (r-1) players from the available (n-1) people to find that the answer is also given by nC(n-1, r-1). Legend  has it that the English (and the Indians) opted for  the second method of choosing their team, while the Australians adopted the `more democratic' first way of choosing their team.

While I am at it, let me cite one more lesson I have learnt from mathematics. There is a tradition of holding an International Congress of Mathematicians once every four years. For example, ICM 2010 was held in Hyderabad, India. Even then, appropriate committees met to decide on the venue (Seaoul, Korea) for the next ICM from among the cities wsho had `bid' for the honour, and the compositions of all the various working committees decided on by the current committee which comprised only of mathematicians and not a single political appointee - and the new committees started having meetings soon in order to draw up an agenda of tasks to be completed before the next ICM, and a time-line for what tasks must be completed by when.

Now for Indian reality. India periodically reconstitutes her Ministry of Social Justice and Empowerment (MSJE) to look into the tasks to be performed for the betterment of her citizens who have disabilities of some sort. A novel way that our Governmant hs arrived at to handle all such problems is to rename ministries and draw up a pretentious list of tasks. And they keep having their meetings without broad-based consultations or doing their homework first. Let me give a few brilliant decisions taken by our Govt:

(i) They flagged off an `accessible model train' which a wheelchair could not enter.

(ii) They are thinking of a bullet train from Mumbai to Ahmedabad. when there are no elevators in normal train stations.

(iii) The MSJE was suddenly renamed (with a Hindi name) because our brilliant Prime Minister decided that it was better to call a PwD Divyang (a person endowed with with divinity) - how else will they have special abilities to do all they do?

(iv) I have written in the past about our horrific experience with the lack of accesssability of the Chennai Metro.

(v) Disability Activists all around the world have been chanting the slogan `Nothing for us without us'. We have been shouting ourselves hoarse with `No to Divyang' and `Nothing for us without us'; but our relevant ministry is either hearing impaired Divyang or wilfully chooses not to listen!


Now you see why I hate the British thinking which first chooses a captain and then asks him to choose his team!

Sunday, 22 May 2016

Don't get a plumber for a doctor's job

I don't know what it is but so many people are utterly incapable of understanding what it means to say that some place is accessible to a wheelchair - as I have repeatedly found, to my dismay and eventual discomfort. This post is a sort of excuse/explanation to many of my friends/colleagues in the Disbility Rights Alliance (or DRA, as it is better known) as to why I have almost studiously been a non-participant in their efforts to make the coming elections 100% inclusive of people with various sorts of disabilities - locomotor/visual/psychosocial/....

This was a conscious decision on my part for various reasons. For one thing, I was teaching a course, and had my weekly meetings with my Ph.D. students, and every expedition with my DRA team-mates involved time and energy. For instance, when we had the first meeting with the CEO, one of his secrtearies had written after months of my colleagues pleading to have an accessible=inclusive election in TN in June, asking us to come and meet the CEO in the Secretariat. Now, I have been to this monstrosity of inaccessibility and rude behaviour by the police many times. So I wrote to the CEO suggesting that if we are going to promote accessibility, we might as well start by meeting in Vidya Sagar or in IMSc which are both truly accessible institutions. To my surprise, the CEO wrote in the eleventh hour accepting my invitation to come to IMSc. We had a promising first meeting when various promises were made. The next meeting was arranged in the Secretariat in the CEO's chamber. It is almost a matter of routine that a meeting is fixed for 9 am, then postponed till 5 pm, and Smitha goes to this `chamber' at 5 but the man does not get there till after 7 pm. This total disregard for other people's time is something you have to learn to live with if you want to work with Govt. bureaucrats, and I don't have time to waste on people who have no respect for other people's time.

I got myself a fancy smart phone so I could have a WhatsApp and be part of the deliberations on plans for this inclusive election 2016. I get over 100 messages everyday in this connection, and almost always, they vindicate the decision I took. Polling booths still typically do not have ramps of accessible gradient, or have problems with enabling people with visual impairment to cast their vote. DRA had ambitious dreams of getting people out of `institutions' (where they have been institutionalised) so they could cast their ballot.

 It has been a revelation to see Vaishnavi marshall/bully/cajole her forces ino trying to achieve the unimaginable. Many of our Govt. servants would do well to sit at her feet and  learn how to run such a campaign. Instead, they just end up antagonising her when she is only too willing to freely offer her services. Did the CEO try, just once, to organise his meeting in an accessible place? Can he find an accessible place in Chennai? His travel to any meeting would be in air-conditioned comfort, while the meetings in his `Chambers' mean  that people like Smitha, Rajiv and Meenakshi pay out of their pocket and travel in auto-rickshaws with their wheelchairs and crutches crammed in alongside them! What a great way to spend the peak of Chennai summer!

In spite of DRA working non-stop since December, and running an amazing programme trying to get the Govt. head-hgonchos in the Election Commission to come to the table and join hands in a serious attempt at making the 2016 the local elections in TN, Kerala, Bengal and Assam totally inclusive, the tragic reality is that while there has been some marginal improvement at a few isolated places, the ground reality has changed little since the 2009 experience. You just have to look at the 150-odd photographs of the general state of (in)accessibility of polling booths that has been compiled by Vaishnavi Jayakumar in Facebook which she calls `Throwback Trauma'.

I'll conclude this sorry narration with a parallel/suggestion:if you want to build a good centre for string theory, leave the decision making to a specialist like Asike Sen rather than an incompetent but probably well-meaning Smriti Irani! If you want to make this country an accessible place for PwD, please leave the planning to a Shivani Gupta/Vaishnavi Jayakumar rather than babus who have screwed up time and time again. I know the Chief Election Officer in TN feels DRA only complains without appreciating the steps he has taken; it is not that I do not appreciate the steps he has taken, but the fact remains that a half-built ramp that does not take a wheelchair user all the way to the top - and at a gradient which will not threaten life or limb - is a job half-done, and which needs to be left next time to somebody who knows what is needed.



Wednesday, 4 May 2016

Self-goal masters

I have been to two events with the purported aim of sensitising people about the need for an inclusive society, both held in studios where I had been invited to be part of a show to talk about disability related matters. The first time, it was for an NDTV News at 7 pm on a friday evening, and I have written about that experience elsewhere in this blog. The second time was yesterday, it was in response to a request from a fellow disability acivist, to say a few words about inclusion for a video that was being prepared for airing at an event later this week. Another thing happened at both events. Before the shooting was to start, I was asked if my crutch which I carry around for the eventuality of having to walk even a few steps somewhere; and both times, I refused, saying I objected to having signs of my assistive devices hidden away. If you want me, I come with whatever my disability entails!

In both cases, I asked the person who was going to be at the studio whether the studio was wheelchair accessible and free of the omnipresent steps that are the bane of wheelchair users. In both cases, I was told there was a small step, but that I would be given all necessary help. And in both cases, there was more than just `a small step', and a bit of walking on one's own feet, which is doable for me but NOT for many wheelchair-using friends of mine. When will people understand what accessibility means for a person with locomotor problems? If the above instances keep repeating even when the event in question is being organised to improve inclusion and sensitise people on matters of concern for PwD, is there any hope for the  much touted `Accessible India Campaign' ever taking off the ground?

If we repeatedly score `same-side goals' before the game even starts, how can we ever hope to win?