Tuesday, 3 November 2015

Will it be an MSed opportunity

Let me lead up to my pitch with a bunch of seemingly unrelated facts:
  • Some time ago, I had clubbed one of my many academic visits to mathematician friends in Sydney with a brief visit to Auckland and Christchurch in New Zealand. My wife really wanted to visit New Zealand, but I had to disappoint her because my monthly take-home paycheck was nowhere near as healthy then as it is today. 
  • My wife and I will be having our 25th wedding anniversary this December.
  • Our daughter (in fact, only child) has been living in Wellington, New Zealand, where she is pursuing a one year programme at the film school there.
  • So I thought `what better way of killing two birds with one stone' than our spending a few weeks around our wedding anniversary with our daughter, driving around some of this beautiful country and seeing as much of it as we can.
  • The missing ingredient to this pot pourri of facts is that unlike my bank balance, I am not as healthy today as I was when I visited New Zealand without my wife. I got Multiple Sclerosis some twelve years ago, as a result of which I have been operating out of a wheelchair throughout the current decade.

Now, let me put all these ingredients together into my mystery story. My wife and I applied for our visas to enter New Zealand. Somewhere in that application form, I had to mention the fact that I had multiple sclerosis. A week later, I received an email from the Immigration New Zealand office in Mumbai, saying I had to submit complete medical requirements through one of their empaneled doctors. So I go and undergo all these tests - incidentally incurring an expense of around 1000 NZD. I sent a scanned copy I received from the hospital to the lady in the INZ office in Mumbai who had set the cat among the pigeons in the first place, incidentally asking how much longer it should take for us to obtain our visas. And her answer is that while the medical reports have been sent to the medical assessor, the normal `turnaround time for receiving the assessment' is 12 WEEKS. (And this is in spite of my having submitted copies of a letter from my doctor (at least twice) to the effect that I was capable of going to New Zealand or anywhere, as I was was traveling with my care-giver (wife). And my doctor is an eminent neurologist of international renown, as is apparent from his letter-head!) I told her that my receiving the reports in 12 weeks - which would take us to some time in February! - would be useless for me, iterating that part of the initial reason for this New Zealand idea was to celebrate a 25th wedding anniversary that fell in mid-December with a daughter now working in New Zealand, and requesting that she put in a special request to the medical assessor. Answer:  `the medical assessor does not entertain any requests'.

Being a moderately accomplished mathematician (see my home-page at  http://www.imsc.res.in/~sunder/), I have traveled to numerous countries, more than once in many cases, and have NEVER applied for a visa more than 4 months ahead of the expected date of travel, nor have I ever had a visa application turned down. If this requirement is being imposed on me for no reason other than my MS - which is not even a contagious disease that will threaten the health of people in the vicinity - then it will be a violation of at least five or six of the following principles enunciated in Article 3 of the United Nations Convention on the Rights of People with Disabilities (to which convention New Zealand became a signatory on 30 March 2007 according to the Wikipedia):

The principles of the present Convention shall be:

(a) Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons;

(b) Non-discrimination;

(c) Full and effective participation and inclusion in society;

(d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;

(e) Equality of opportunity;

(f) Accessibility;

(g) Equality between men and women;

(h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

I haven't got to this stage of my life by taking things lying down. I still haven't given up hope of being with our daughter on our wedding anniversary: I am hoping that somebody in New Zealand will see this blogpost and decide to do some disability activism and take up cudgels on my behalf.

By the way, the mystery I was alluding to in this story is how it is going to end: will the good guys win or be thwarted by what can best be described as an unwarranted and unnecessary bureaucracy that refuses to look at the facts and do the only possible decent thing under the circumstances. Nothing in the visa form said I would need to take a medical! The form talks only about people wanting to come for six months or more. I only wish to spend a measly two weeks. I will have overseas medical insurance, and in the unlikely event that my `condition' should manifest itself in another episode, and that my insurance will not pay for this pre-existing condition, I have given enough proof of my financial solvency to show that I can pay for whatever expenses are incurred; and nobody will be left with a a destitute and unwell Indian on their hands! Is there no way a person with MS can travel between international borders?

Friday, 9 October 2015

Why is our mindset naturally negative and non-inclusive?

I have given way to this kind of hyperventilating when writing about my experiences as a wheel-chair user wanting to fly in a commercial aircraft. What never fails to get my goat is how people everywhere assume that the loss of your locomotor functions means the loss of everything else; hey, we can still think, often much more lucidly than the `pitying helper'; we still are sensitive of our rights; we will not tolerate being treated like masses of protoplasm worth nothing but nuisance value.

Let me expand on this gripe. Whenever I travel in a wheelchair, normally accompanied by my wife, some official (officious?) bozo will ask me to wait by the side, and then take her somewhere else to ask her the reason for our being there. Never mind the fact that I am the guy who has filled all the forms - even her's - and that I am much more likely to know the answers to their questions. This always happens at airports; there was a time when I would always insist on being taken where she was. These days, confident that she knows the routine perfectly well, I often give up this cussed insistence on being taken along. I don't mind not insisting when such insistence will mean that somebody will have to push my wheelchair from the point I would have been abandoned to the point she would have been taken to `take care of the business end'. But the last few days were the rock bottom of this kind of treatment. We had gone to have our passports renewed. I had spent the previous few days getting the various papers and xerox copies ready, put them all together in a handy folder before trooping off for this expedition after having ascertained that this particular office (in Saligramam, Chennai) was accessible to my wheelchair - which is battery operated and I do not need anybody to push it, as I can drive it wherever I need to go, if only there are ramps, and elevators have wide enough doors and are roomy enough to take at least one person other than me and my wheelchair (in case of an emergency).

Back to my story: there is a ramp to enter the building from the parking lot, but with an impossibly steep gradient. So, Sekar, my driver and trusted Sancho Panza in all my Quixotic travels/jousts, gets out of the car and helps push my motorised wheelchair up this Himalayan slope, before going back to park our faithful Rosinante until needed again. Once at the top, we are asked the time for which we have been given an appointment and sent accordingly to one (less populated) room. As soon as we go in, up pops this officious uniformed bimbo, who tells us that Sita, my wife, can take all the papers and go to the right to where the lines are, while I am told that I can go to the next room and wait, `not having to worry' about the formalities, which can be taken care of by my wife. It is absolutely useless my saying I know what is where and that it makes more sense for me to take care of the `formalities'. I get sent nevertheless into the next room behind a locked door. It occurred to me a bit later that she shouldn't submit the old passports until the relevant people know that they held US visas valid for a few more years. I had to catch the aforementioned bimbo's eye through the minor chink of visibility afforded by a turnstile there, and make pleading gestures for him to come through the locked door. He came with a look of pained resignation saying she'll take care of things, just stay cool here. When I absolutely insisted, he said `see all the crowds of people; I don't want you to distutb them with your wheelchair'. He finally relented only when I asked him if I had no right to go into any of these rooms just because I was in a wheelchair; but even then, he reluctantly gave in only with a `but don't go bumping into people'.

Once inside, the common public were much more helpful. In fact, I had finished all I had to do and was told I could go home within 45 minutes of entering; but for some strange reason, we had to wait inordinately long for Sita's token numbers to appear on the screen. After the last such wait, she went into some room where she was told that the records showed that she had written in some appliecation form 15 years ago that her parents' names were nothing remotely like their names, and was asked to take some form to an officer in a neighbouring room. This lady stared at the monitor screen for some ten minutes wondering how this could be, and finally suggested that we go to their `back office' two days later and get something done so this would not be a recurring problem and we finally got back home almost four hours after we set out.

Two days later, I had to go with Sita although my passport issues had been resolved, because, owing to some neurological problem, her handwriting has become practically illegible so much so that I have to fill all forms for her. And here we were off again on a pleading mission to allow me and my wheelchair in. Although the office was supposed to open only at 10, we were asked to get there by 9. The Indians are great believers in going early so as to finish early. All that resultts is a huge crowd before the doors are even opened, and they are all trying to rush in as soon as they can. Sita and I were there at 9 as instructed and we went and stood next to the sliding door at the entrance. Even before that door was opened, a guy in a security guard uniform came and suggestdd that I wait in the side because of the crowd and suggested that only Sita go in and finish everything while I wait outside `calmly'. It had  to take an argument with steadily rising decibel levels, finally culminating in my asking him in chaste Tamil if I had no right to enter the room, before I would even be allowed to enter. And when we could finally enter, he first asked Sita and me to enter, asked her to sit on the first of a row of chairs, and asked me to move farther near some counters and away from the chairs `so people could sit comfortabbly'. `Can't I go any bloody place in my wheelchair? Why shouldn't I park my chair next to her chair and sit there?' `Ok, I was only thinking the wheelchair may be in the way of other people'. `Just watch me park it and see if anybody has any trouble going around it!' I must have reacted equally irritatedly to many other such automatically negative reactions from people suggesting I stay put and Sita go in and take care of things `only because you need not be inconvenienced'. Finally my solution was `She needs me as a scribe'. The story has a happy ending however, because we were finally led to a sensible (sensitive?) officer who asked Sita to write a signed letter explaining that an error had mysteriously entred their records in 1998, whereby her parents'  names had been listed as nothing remotely close to their actual names, after which we have been issued passports with no questions asked until this time, and that all six or seven passports issued in the past uniformly announce her parents' names to be what they are, that she has no idea how this erroneous note exists in their files, and could this problem please be rectified and she be issued a new passport? I explained the reason for my presence to the nice man, and then drafted such a letter in my hand-writing, and finally got her signature. He read it, sent Sita somewhere nearby to get the letter and an attendant note by him scanned and told me nicely (!) that I would not need to go and that we could leave in about ten minutes confident that this nuisance would not recur because of notings he had made on the offending file - and I came back to the institute finally by 12.30 to return to my daily routine in my sane and inclusive cocoon of my institute!

Wednesday, 16 September 2015

Civic Sense, will you please inhabit the Indian psyche?

What are the solutions to these ills in our society?

People drive through a red light because no other car sems to be making use of a green light?

There are no traffic lights with a green for pedestrians in major intersections?

If at all a city thought it fit to have reserved handicapped parking, some fat jerk, probably with connections among the rich and famous, shamelessly parks his car in one (or maybe even straddling two) of these reserved spots.

Even if a city corporation strives to have usable and wide pavements for the use of pedestrians, some studly motorcycle rider rides his bike up onto the pavement and parks it right across that pavement so no pedestrian can bypass this bike without some gymnastics that would make a Nadia Comenicii proud - people in wheelchairs, BAH!

People park bikes (motorised or otherwise) at the foot of the occasional ramp that might have been provided, thus rendering the ramp useless.

People wanting to turn rignt at an intersection with traffic lights happily wait at the top of the left-most lane, thereby forcing the would be left turner behind him to fret and fume when a free left turn light comes up and consequently being forced to wait as much as five minutes, till the unconditional green light comes around again and the insensitive driver can cut across traffic wanting to go straight, and the luckless left-turner will be permitted to go his way. The amazing thing is that this even happens the other way, with would-be left-turners waiting at the top of the right lane.

Buses are impossible for use by people with visibility or mobility impairment. They typically park briefly some fifty feet past the bus stop and ten feet from the pavement (into the road), and some twenty people run in a mad scramble to merely be able to grab some part of the bus and stand precariously on the steps before the bus zooms away even as people are trying to get on! How far is that from a society where the bus parks exactly in front of the bus stop and the driver lowers a mechanical lift to enable a wheelchair user to get into the bus and then personally comes by and locks the wheelchair into safety belts? How many more centuries before you can ever hope to see that happening in India?

Bottom line: until EVERYBODY respects the rights of EVERYBODY else, there is no use of building ramps, or `changing the very paradigms of skill training in terms of improving the pedagogy, introducing multi-dimensional technology that enables e-content solutions and improving the capacities of Institutions/NGOs offering skill training to PwDs' as a recent article in TOI glibly suggested.

Hon. PM Modiji, can you please stop traipsing all over the world, making grand speeches and initiating any number of new schemes with long Sanskrit names which will usher in the long advertised acche din, and GET REAL and make it possible for people like me to get out of our homes, on to the roads, and lead a `normal life'! While the news blares on and on about swachh bharat,  newspapers carry stories almost every day of people (`of a certain caste') dying due to suffocation by noxious fumes from sewers of shit they have to dive into to unclog them (for the sake of people of `higher' castes, who cannot do this work which is reserved for the aforementioned caste)!

Saturday, 5 September 2015

Hypocrites or Hippocrates

Memories of the family doctor paying house calls and enquiring, in leisurely fashion about the well-being of some common acquaintance seem to have become just that - a throw-back to times when people had time to write long six page letters by hand, and to observe common pleasantries in human relations.

Today, if you have the misfortune of needing the services of a doctor, there is little sign or time for pleasantries. The first few impressions are negative in the extreme: firstly, you are asked to come to a clinic at something like 7 am on a working day. One thing the receptionist will be prompt about is to get you to register (Rs. N(1) down `for consultation' if you are given a bill); secondly, it is not at all uncommon to be asked a half-hour later to go and get some test done (Rs. N(2) more down, before you may have even seen the doctor). If you are lucky, your name will be called at 11.30 am, and you finally get to see the Wizard of Oz - who will then ring a bell, in response to which one of the crisply uniformed young women who talked to you about N(k) for some k, will come in bearing a file, after glancing quickly at which, the Wizard will scribble something on the last page which can only be deciphered by another Wizard, and you will be informed that you have to buy a certain list of medicines (another N(3) + ... +(N(k) down), consume them at specified times and in specified amounts, and the smart young woman will escort you to a counter to give you the prescription. In all this while, the Wizard will not have breathed a word describing your condition or its potential future course.

The title refers to the fact that all doctors, upon - or maybe even before - earning the right to cure the unwell, have to take the so-called Hippocratic oath. Let me interject a couple of sentences from that oath (in italics) in the text below to drive home some points that needs to be made:

I will hang out my neck and say many (most?) of our doctors have to pay huge bribes before they can get admitted into a suitable programme; and this money must be recovered. Their equivalent of the bookie for our IPL cricketeers are agents from various pharmaceutical companies who line up at their clinics trying to convince them to prescribe the medicines whose samples their bags are full of! I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. The clinics mushrooming around the country are all acquiring their own scanning machines of various kinds (all of which cost BIG sums of money); is it any wonder that you keep getting asked to get a plethora of tests and scans done even when you are merely suffering from a stomach ache, and buy a slew of medicines which are often totally unnecessary?

The point of this post, however, is really to point out the obstacles they put in the way of people with disabilities (God help them particularly if they are of the `mentally ill' variety). Here are a couple of instances reported in the papers not long ago illustrating the horrible levels that the interpretations of the Hippocratic oath (I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm) have descended to:




Can't a hospital which advertises itself as accepting insurance policies for people with disabilities be sued in court for refusing to take in such a patient?

Sunday, 16 August 2015

Time again to be reminded: `not for you, Jack'!

Every year, on this day, all India gets together to celebrate its Independence Day. I"m sorry, I should have qualified that to  `all but the many millions of people with disabilities' who are denied the right or ability to be independent by a cussedly stubborn refusal by the powers that be to permit them to lead independent lives in an inclusive society. In fact, after all the census-taking exercises, our demographers are still unable to come up with a precise count of the number of Indian citizens who suffer from disability of some sort. All the Bills or Laws that spout inanities about the rights of these people are not worth the paper they are written on. As I only have first-hand experience of the trials and tribulations of those forced to use wheelchairs, I shall only rant on those. People with cerebral palsy, or menial illness of some sort, or visual, auditory or speech impairments, or disabilities of various ilk will have their own tales to tell.

I do not have the independence to go to a movie, play or concert for several reasons: (i) I cannot get out of my house in my wheelchair for fear of getting grievously injured or killed by some speeding maniac on a motor-cycle or in a car; (ii) I cannot get onto or off a pavement because our town-planners simply do not bother to equip our pavements with cutaways or ramps; (iii) in any case, there are so many obstructions on the pavements (if indeed there are any pavements) that navigating on them in a wheelchair is a pipe-dream; (iv) our public transportation is simply unusable by a wheelchair-user; (a bunch of us went through a heart-breaking experience performing an `access audit' of the much touted CMRL) (v) and if, in spite of all odds, I got to the Museum Theatre or the Alliance Francaise for that play, I need that magic carpet to take me and my wheel-chair up all those steps.

And the Government gets all coy and calls people like me `differently able' and when I find myself having to get out of the comfortable cocoon of my wheelchair and climb that inevitable step or two, there is no dearth of people who are ready to help me - only, their idea of helping is to grab me by my upper arm and try to essentially power me along (repeated requests to desist (chod dhijiye mujhe) are forgotten until the next tricky stair that has to be navigated).

All this ranting on my part is in spite of my being one of those guys who is lucky to be financially quite comfortably off and have a considerable support system set in place after years of planning and demanding my right. If I was not so solvent, I would have no option but to stay at home all day - simply because I just could not get out of my home.

Happy Independence Day! Jai Hind!

Saturday, 1 August 2015

Hey Mr. Politician, can you briefly do what we have to do forever?

I wish to throw down the gauntlet to our politicians in Chennai. I challenge any of them to carry on a normal full workload, but confined to a wheelchair for a full week. I'll make demands of varying levels of `toughness' so they see how one section of their electorate across the financial spectrum lives.

On their first day, they may come to work in their chauffeur-driven car. The trick here will be how they navigate the steps and the toilets, and find ways of entering buildings which do not have ramps.

On their second day, they will have to fly to a different city for a meeting, and take an evening flight back home.

At the end of the third day, they will need to attend a function in a typically inaccessible hotel, go to a movie or a concert, and finally have dinner in a restaurant which is NOT in a five-star hotel.

On the fourth day, they will have to take an approximately three hour train journey to a neighbouring town, attend a meeting in a community hall there, and come back by train. (Entering and getting off the train will be one of the special joys to be experienced here.)

On the fifth day, they will go to work by public transport and do a full day's work. They could use public buses or the fancy new metro, whose praises our newspapers are so full of.

I believe a similar regimen has been used for newly recruited IAS officers and legislators in Odisha. What prompted this mail was (a) my trip to Delhi for a two-day meeting at what is often considered the `premier' science academy of the country, at the end of which, my wheelchair almost came undone and is undergoing a serious overhaul, so that I will be ready to go for another meeting in Mumbai next week-end (my body revolting in various ways all the time, from upset stomachs to aching limbs), and (b) a friend of mine sending an email suggesting that we follow the example where the mayor of Reykjavik has promised to go out and navigate the city centre before long - in response to an online challenge from a disabled person (sic) to go about his daily business in a wheelchair.

In the next weeks, they can try going blindfolded or with their ears stuffed with cotton wool so they can't hear!

Saturday, 4 July 2015

Eternal optimism vs. refusal to accept reality

We finally got to do our much-advertised access audit of CMRL; as the theme-song of `Love Story' goes, `where do I begin, to tell the story...'? One short interlude towards the end of this evening best describes the string of disappointments in store for us. An architect, no doubt working with CMRL, had been accompanying us, most likely charged with the task of humouring us and making sure nobody fell into the tracks! At one point, more than two hours into the exercise, he made this suggestion to Vaishnavi (who, incidentally, was the person with whom I made my initial visit to the Koyambedu CMRL, which I wrote about in my last post in this blog): "It would help if you give  us any international standards /guidelines you may have access to". Vaishnavi glared at him and asked `who, rather, what, are you? " He said "I am an architect" with a touch of annoyance. Vaishnavi digested this slowly and said "I should shoot you" before going on to give the startled chap a brief survey of the story chronicled in my last blog, on how we had been begging the CMRL for close to three years to look at the various documents we had been repeatedly sending them!

Rather than boring you with a blow-by-blow description of the evening, let me simply mention the more glaring goofs.

* When the train comes to the platform, there is a non-trivial gap between the rake and the platform - so much in fact that the little front wheels of manually operated wheelchairs run a serious and dangerous risk of slipping into the gap if, by chance, it rotates through 90 degrees, as is likely when it attempts to navigate the 2-3 inch height difference between the platform and the floor of the train.

The gap

* In order to avoid the danger described above, it becomes necessary to turn around and reverse into the train, as the front wheel is large and runs no such danger; but this means propelling oneself up and backwards to get into the train. Given that the train doors are open only for half a minute, and that there are likely to be some fifty or more other `normal' people pushing every one and thing in the way in order to to get into the train, all this is not very encouraging to the wheelchair user.

* To add spice to the exercise, there is a Trishul-shaped object bang in the middle between the doors on either side of the train, intended for people to hang on to, which one should manoeuvre around, and find something to hang on to. There is nothing like a seat belt which one can lock one's wheelchair to.

* The ticket counters are not low enough for use by people in a wheelchair. To make matters worse, you cannot buy  return ticket for A-B-A. When we finally got to `B' (which was Koyambedu for us), I needed to use a toilet. A helpful samaritan told me there were toilets at both `concourse' and `platform' levels, while we needed to go the `concourse' level to buy tickets to get back to A' (Alandur). And there was no sign at platform level as to where one may find the elusive toilets.

* So I go down to the Concourse level; and the first problem was getting past the turnstile. As our group had got separated when we boarded the train at Alandur, we had stopped at an intemediate station, to get into a later train they must all be coming on. And then, I learnt you should complete the travel from A to B within prescribed time-limits. So when I inserted by token in the turnstile, it wouldn't open. I would have learnt the reason for this if my wheelchair had been a few feet taller, when I would have been able to see a red light flashing and a sign explaining why it was flashing. One of the people who was `escorting' me told me this as also where I should go to pay the excess fine of some Rs. 10 in order to get through.

* By now, I am ready to use that toilet, and am directed to a `Gents' toilet, which is clearly not accessible. When I find no signs which may give me a clue, I ask somebody who tells me the only disabled friendly is on the platform level! Meanwhile, I've got to go! So I go to the gents' toilet, and find, on opening the door, that I have to walk across a room which has two wash basins and water all over the floor, which I need to gingerly negotiate before going to the room with the WC.

* After all this, and rubbing my wet hands on my jeans rather than use the unappetising towel next to the wash-basin, I bought my ticket to Alandur prior to ascending to the platform level and joining my fridnds.

And could not get home soon enough, to lick my wounds after this throughly demoralising experience best descaribed by the architect-Vaishnavi conversation mentioned early on.