Achche Din have arrived - and how!

2016 has been a knockout year on so many counts. I don't think the world can survive too many more such years. Here is a list of the various body blows she has been subjected to: Brexit, Trump, increasing violence by American cops against black kids, American legislation permitting students to carry guns (even machine guns) into the classroom, people being forced to flee from country to country due to bias against their `unfamiliar' customs/languages/religions ...

Coming to India, boys being manhandled, even killed, because they were suspected of eating beef (when in fact they had not), repeated instances of young Dalit men committing suicide in hostels of IITs because of the daily trauma they were subjected to, a man with physical disability being brutally assaulted because he did not stand up for, and was thereby guilty of disrespect to, the national anthem; who cares if he didn't stand because he couldn't? Now the Supreme Court has ruled that everybody should stand when the national anthem is played at the end of each screening of a movie; the doors are to be closed until the anthem is over, to prevent people from leaving the movie hall before the last `jaya hey' is sung; never mind the fire hazard caused by such locking in of people; and finally, EVERYBODY, without exception, MUST STAND for the anthem! Even a wheelchair user?

And for the icing on the cake, the much heralded RPD Bill was tabled in Parliament amidst many adjournments in view of opposition parties protesting the recent demonetisation exercise that was suddenly thrust on the man on the street, thereby creating chaos and untold hardship on those people who do not have the luxury of holding bank accounts or credit cards.

The RPD Bill was unanimously passed with essentially no discussion, in spite of the numerous proposed amendments. The reader of this blog will know that an attempt was made to hurriedly pass an even more objectionable version of this Bill in 2014. The Disability Rights Activists in Delhi, whose opinions are usually the only ones sought by our National Press,  have been peddling the dubious `Something is better than nothing' or `You can never have a perfect bill' line, and strongly supporting the passing the bill in 2014 itself. Fortunately, enough people saw the drawbacks of the Bill and made a big noise on social media to ensure that the Bill was forwarded to a Standing Committee. After many people, including the loudest of the voices from the DRA, made a big issue of the need for consultations being held outside Delhi also, the Standing Committee came to Chennai and Bangalore and graciously gave plenty of time for DRA to explain the reasons for their opposition to the Bill. They subsequently incorporated many of our suggestions in their recommendations to the Govt., and the resulting changes in the draft of the Bill reflect that. Unfortunately, the Bill was still passed with enough drawbacks for many of us to get really annoyed when a senior activist like Javed Abidi vociferously backed the passing of the Bill `at least this time' and later applauded vociferously when the Bill was passed. The reason for our annoyance with him is that there is a large group of people in Delhi who seem to unthinkingly agree with anything he says, possibly because the National Press has almost made him the face of Indian Disability Rights. The current Bill is ideologically faulty and dangerous.  As one of the leading lights of the DRA says: Better the group suffers than an individual's liberty lost.

Let me iterate a few of the gripes I have with the current avatar of this bill:

The bill claims slightly pompously that Disability has been defined based on an evolving and dynamic concept, whereas what has evolved is that the number of conditions that have been `defined' as constituting disability has now been increased to 21! I challenge anybody from the ministry entrusted with matters related to PWD, whom they have rechristened as Divyangjan in spite of vigorous protests by those so renamed, to give a clear argument as to why these, and only these, 21 conditions may be called forms of disability!

So many clauses are phrased with a built-in loophple which is almost clamouring to provide shelter for offenders of the Bill. Let me illustrate:

Clause (3) states: No person with disability shall be discriminated on the ground of disability, unless it is shown that the impugned act or omission is a proportionate means of achieving a legitimate aim.

Clause 9. (1) states: No child with disability shall be separated from his or her parents on the ground of disability except on an order of competent court, if required, in the best interest of the child.

Clause 14: My better-informed friends of the DRA have grave reservations on the implications of this whole `guardianship' issue  for `legal capacity'; and in fact consider this the most objectionable clause in this Bill.

My final gripe is the toothlessness of this law replete with grand statements with no indication of either `by when the stipulated measures would be in place' or `what the penalty for violations would be' and `how does one ensure this'. Such statements as the following are everywhere dense in this Bill:

Clauses 16 and 17, dealing with inclusive education, make promises that have been fulfilled probably only in  the UK or USA. I have been in the business of research and education for the past 35 years and screaming about the need for accessibility for the past five or six years, and IISc, Bengaluru (considered by many as the jewel in the crown of our research and higher education) has hardly shown an iota of improvement all this time in terms of accessability.

In conclusion, what can I do if, five years from now, I still find:

• that the following buidings are still hopelessly inaccessible:

1. the Vigyan Bhavan where the Government periodically chooses to honour various Divyangjan for sundry achievements - which less divine people find `inspirational'?
2. IISc, TIFR, CMI or various IITs, where one still sees people with locomotor disabilities being carried up numerous flights of stairs on the backs of friends to get to class;
3. Movie Theatres where there is either no room to park a wheelchair, or the inevitable steps to go up to one's seats (unless they are in the first row);
4. the Music Academy and other concert halls during the Chennai season which have stayed an essentially forgotten experience ever since I could not comfortably/safely walk on my own two feet;

• or that I cannot enter my bank or use its ATM machines which are decorated with their inevitable three or four steps with a swinging door that opens outwards like adding insult to injury.
• or that I cannot use public transport because (i) I could not cross a street which has been thoughtffully provided with a three foot high road divider, or (ii) I could not get down from a platform to use a bus, or (iii) I cannot use a train because of different levels of platform and train, or (iv) I have to fly everywhere, with my wife, and it is costly when I can no longer `claim the expense'.

Which minister without a trace of divinity do I sue the pants off of, for this “discrimination” in relation to disability (Divyangjan) as defined by Clause 2(h) of this Bill, i.e., distinction, exclusion, restriction on the basis of disability, impairing or nullifying the recognition, enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field and discrimination and denial of reasonable accommodation.

Old habits die hard!

This post is based on two things: Firstly, I heard a fantastic speech by Haben Girma yesterday and one of the lines she used should be taken to heart by well-meaning people who do not wish to sound insensitive or  politically incorrect: `Don't describe me or my talk as inspirational'. The offending adjective is frequently used for a person who is an achiever and has some manner of disability. The entire sentence `you are inspiring/inpirational' reeks of condescension in this context, conveying the impression that you must be inspired/have divine powers/ be a divyangjan in order to be able to achieve anything if you have a disability. Secondly, the first question tossed to Haben by a member the audience was `You say technology should come to the aid of enabling such people to contribute to society; on the other hand, India is a poor country; how does one reconcile these two problems?'. This question came from a former colleague at the institute where the talk was given, and many is the argument we have had over the years on different points of view; and it is time to cross swords again! Haben hit the nail on the head when she answered him with `it is just a matter of attitude; it only requires a willingness to recognise and solve the issues'.

To resume my squabbling with my ex-colleague, I will say `our poor India has money to build four lane highways all across our land, cut all the trees to build monumental flyovers and gift her cities to such of her poor citizens as can drive their gas-guzzlers and create pollution to the alarming levels that Delhi witnessed recently'. This idiotically short-sighted belief of our city-planners that building wider and more roads will solve all our problems, is an abhorrent gift to the world by America that never fails to get my goat.

The question I am ranting about amounts to this: should we continuously build all these roads which make it impossible for a wheelchair user, even a pedestrian, to step out of his home (unless he himself has a car), at a cost which is of a much greater order of magnitude than that of making information technology and our buildings accessible to people (with or without disabilities/wheelchair-using/sick /elderly)? In an earlier argument with this colleague I had dismissed some statement as bulls..t, and he publicly chastised me for using `barnyard epithets'. Seriously, asking Haben the question he did merits a repeat usage of such epithets, because they are the mots justes in this case.

This lecture of Haben's was recorded and a link to that video is https://www.youtube.com/watch?v=cOYthLcP1ZM

East is east and west is west, but their DRAs can - and will - meet

DRA, the group of Disability Rights Activists that I try to get together with on some of their jousts against our barrier-full environment, has many remarkable individuals in it, some, but not all of whom I have written about elsewhere in this blog. I intend to start correcting these omissions by devoting this post to Bhavna, a young woman with remarkable tenacity and positivity. She carries the burden of complications that comes with being a victim of cerebral palsy. And in her case, this is extrmely limiting. She cannot speak, and she needs the constant assistance of a caregiver - to push her in her wheelchair, clean her up when her condition causes her to drool, etc., etc.

Drooling is generally regarded as uncool, maybe even eliciting a `yecch' from the `beautiful people'. The evident distaste in others' faces is not too easy to stomach by one who has no control over this physiological problem, especially when the offender of high society behaviour standards is sensitive and perceptive. `Normal' people should include this observation in their book of etiquette rules as a step towards inclusivity. A little thought would reveal that nobody would deliberately drool!

In a similar situation, 9 of 10 people would just give up and live a life of dependence with little self-esteem. But not Bhavna. She does it by pointing with her eyes which are fortunately unaffected. A chart with letters as well as commonly used words is placed before her, and she points with her eyes and her mother (or other people, like Meenakshi, another member of DRA, who have subsequently learnt this art not unlike a game of charade) guesses what she is trying to say till she signals assent. By such a tortuous process, she communicates with the world; and with sufficient mastery to have earned a Bachelor's degree in Commerce and to run a boutique. (See http://www.thebetterindia.com/4655/tbi-inspirations-she-cannot-walk-talk-or-write-but-young-bhavna-botta-is-a-successful-entrepreneur/)

Recently, she started a magazine called Connect Special which, among other things, covered some innovative methods she had devised to sensitise the lay public regarding the need for, and advantages of, society learning to adopt inclusive attitudes and designs to enable people with disabilities to participate meaningfuly in society. These methods included getting people to gather on the Bessie Beach Road, which is closed to traffic on Sundays during 0630-0900, and participate in assorted activities designed to create awareness of PwD and their problems with all manners of barriers - physical, attitudinal, ... - that society throws at them.

On one of those weekends, when I had managed to cajole my driver to take me out there early on a Sunday morning rather than play with his daughter not yet a year old, a middle aged gentleman came up to me and told me he had come all the way from a far-flung suburb of Chennai because he was Bhavna's No. 1 fan. He diffidently asked me if I knew of Haben Girma. When I pleaded ignorance, he asked me to look her up on the net, and to make it a point to convince Bhavna  to make contact with her during her proposed trip to Bangalore in November. So I did look up Haben Girma on Google and understood what Martin was talking about.

If you didn't know about her, I should let you see for yourself (for instance, at https://habengirma.com/2014/05/04/haben-speaks-at-tedx-baltimore-2014/) how this deafblind young woman's mother managed to take her and her (also deaf blind) younger brother from Eritrea to Syria, thence to America where she became the first deafblind graduate of Harvard's law school and proceeded to be one of the more accomplished members of the  Disability Rights Advocates at Berkeley. Among the feathers in her cap is a visit to the White House at the behest of then President Obama.

So I sent an email encouraging Bhavna to write to Haben explaining her own involvement with the DRA in Chennai (the only variation being that the A of our DRA stands for Alliance) and inviting her to visit Chennai for a couple of days. (You never know when a highly connected friend might not be just what is needed!) And thus it came to pass that Haben Girma is visiting Chennai during November 26-28 and will be lecturing in IMSc Chennai (at 1700 hrs on the 26th on Equal Access for an Inclusive and Progressive Society) and at IIT Madras (on Access in Education at 1630 hrs on the 28th in CLT) and that I walk around with a glow of contentment at how Martin and I helped orchestrate the meeting of the shining lights of the DRAs in Chennai and Berkeley!

The mind boggles at the technological problems of Bhavna and Haben communicating with one another. But you know what! Only a fool will doubt their ability to have a long and meaningful conversation with results that would greatly enhance the move to empower people with disabilities.

(Let me end with the qualifier that all the credit for this meeting, planning for Haben's visit to Chennai, goes to Bhavna and Vidya Sagar; I am merely basking in the glow of expectation of this wonderful upcoming event. I am not claiming any credit other than telling Bhavna there was no harm trying. Haben responded positively to her less than 48 hours after my suggestion!)

How many times must a man fall down...

I posted a piece called `my comfort zones' some three years ago, which was primarily about the various steps taken by the then director to render our institute campus accessible to my wheelchair. And I have been boasting to all and sundry about this oasis of accessibility in Indian academia. But chinks are now appearing in this cocoon of protection that has sheltered me all these years. What set off this eruption - after a period of simmering discontent - was the fact that I had a nasty fall in the institute bathroom on Thursday. Fortunately, there were no serious consequences, but it is just a matter of time before one is not so lucky.

I want to list some of my grievances, if only to ask my other sister institutions of research/education to see which of these grievances they can confidently say are not applicable to their institutions. I wrote about my old school last week, and even the faculty toilet had serious problems of access; I dread to think of students' toilets!

Before we go into my list, I must repeat a favourite gripe of mine about calling some place accessible, when there is `only one step'. It is this totally unwarranted assumption that wheelchair users can negotiate a terrain if it entails only taking one step. This assumption is what led to my getting a gash in my head which required some five stitches being put in. (I am fine but for being bruised in spirit and in the head!) Every day I use a toilet some three or four times a day in the institute; and every time, I drive up to the door of the toilet, then get up, open the bathroom door briskly (lest somebody pull the door from the inside at the same time and causes me to lose my balance and fall inside), walk some six or seven steps, climb the inevitable step before getting to use the urinal, and reverse my steps. It was in briskly pushing open the door that I really lost my balance on  Thursday and took an impressive toss inside.

Only after my protesting (for at least a year or two!) at the absence of a single handicapped-friendly toilet on campus that one, and later a second, came up, but my laziness at going all that far makes me use the one on my floor where I had the fall last Friday.

And there is not a single bedroom in the guest house, where a wheelchair-user can use the toilet. I am tired of repeating the fact that many wheel-chair users are simply incapable of climbing that `only one step' or walking a few steps!

In spite of all the appreciative noises I have made in the past about the extent of accessibility of my institute, I even started wondering if I should sue the institute or MSJE, in the hope that such accidents will not recur. An American would do it without second thoughts; while I am held back by feelings of gratitude and loyalty!

In India, people's solution is `we will provide all help needed' which may mean some person(s) bodily lifting up your wheelchair with you, a `solution'  simultaneously dangerous, scary and embarrassing! In case you do not know what the UNCRPD is, look it up. It strives to reach a state where people with disabilities can function efficiently and independently in a society which extends them reasonable accommodation. Let me conclude with the two final paragraphs of Section 2 on Definitions in the UNCRPD whose sense and spirit need to be dinned into our collective conscioussness:

“Discrimination on the basis of disability” means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation; 

“Persons with disabilities” include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

MCCHS: 50 years after

Readers of this blog know that not long after finding myself a `person with disability', I started on a campaign of some manner of advocacy for disability rights, especially in educational institutions, at least in India. Recently, I found myself presented with the perfect opportunity to do some good. More precisely, I was contacted by some school-mates of almost 50 years standing, saying they were planning a sort of major reunion in January 2017 for the batch which graduated from Madras Christian College High School in the summer of 1967. I wrote back explaining my `wheelchair status' and the possible practical problems that might prevent my participating in the festivities. To my unalloyed glee, I got a call from Anantha Padmanabhan (one of a pair of twins from my section in XI-th standard, or 6th Form as we called it back then) giving an undertaking that an earnest attempt would be made to eliminate all such `problems' because they  wanted me to be at the reunion in January. 

So I suggested in an email to the Headmaster that I be allowed to make a tour of the school and make a list of things that would need to be done to render the school accessible - not just for me at this reunion, but for many possible future students with locomotor disabilities. (I even offered to help defray the cost involved). Anantha is a doer. He followed up my email with personal visits to the school to talk to the HM and Ms. Jacinth, the secretary of the OBA (Old boy's association). The upshot of it all was that I went to MCCHS today, along with my new old friend Anantha, met many of the Dramatis Personae, got the HM's permission and assurances of administrative help along with blessings for my suggested POA, I took some photographs to corroborate my assertions, and started thinking of the best possible way to make my case. The obvious answer was my blog, so here we go.

One of my primary requests would be for putting up ramps in many places. In order to counter any objections raised about the cost incurred, let me refer the reader to my post http://differentstrokes-vss.blogspot.in/2016/03/fit-any-steps-design.html in this blog, for a design which could have been followed easily in the carpentry class I remember from the school of 50 years ago. 

When I started talking about ramps to Ms. Jacinth, she said they did not like the idea of ramps because they were used by two-wheeler drivers to park their vehicle where there were supposed to be none. An example of one of the many places I'd like to see such a ramp is in this place in front of the

 main school building. A raised platform without a ramp is, in my eyes, a blatant symbol of exclusion of the wheelchair user and acts on me like a red rag on a bull!. The tree in front and the cement seats nearby would not permit easy parking!

Not far from this spot is the staff toilet. 

This `L' shaped construction is meant to protect the modesty of a staff member, but serves to keep out a potential user on a wheelchair. Surely, having a simple screen instead of a cement construction would solve both problems. If you are the sort of wheelchair user who simply cannot get up to hobble a few paces, then you have no hope of getting past this `L'. On the other hand, if you are a little more mobile, like me, then what is in store for you after clearing the `L' hurdle is the second picture above. It seems to me that a stand-alone disabled-friendly toilet might be the best solution! 

One place I should have photographed, but forgot to, was the two sets of three or four steps at the front entrance to the main building (on either side of the sets of taps near the staff toilet mentioned above). A small ramp here would be most helpful. I need to talk to an engineer/architect for the most sensible design of a ramp in these narrow steps.

Another space which could do with some ramps (of a slightly different design than my `fit-any-flight' design is in the assembly area between the library side of the school and the main playground (F2?)

which has some five or six shallow steps sloping down gracefully to the ground. 

I then did a short trip down to F4, now taken over by the MRF for its Cricket coaching activities. The short trip from the gate of F4 to the Ravi Mammen Memorial Swsimming Pool (which I really wanted to see for Ravi's sake - he had been a class-mate of mine after all, with whom I have played inter-section cricket matches) was paved with one of those artsy tiles of irregular shape, which necessitate a wheelchair's negotiating ups and downs where a wheel could get snagged.

When it was time to get back to where we had started, we had the good fortune of running into the interior decorator overseeing the renovation work going on at the auditorium as part of a much larger civil work that has apparently been entrusted to the architects Pithavadian and Partners. When we spoke to him, he agreed that this was the best time to make any suggestions that were deemed necessary, since incorporating some of these features at the construction stage were obviously preferable to doing expensive retro-fitting at a later stage, post construction. The first thing that the concept of an auditorium triggered in me was whether there would be a ramp to make the dais accessible. My fears were well-founded; I found that this 

was the way to the dais!

I would really welcome the opportunity to talk to the architect from P&P - whose contact details were kindly passed on to me via Anantha by Ms. Jacinth after the HM gave the green signal - to discuss many things, including:

• many places which could do with some ramps; eg. 

• the possibility of smoothing out rough edges so the terrain in many places need not look like this

 and be a nightmare for a wheelchair user;

• his advice on where to squeeze in a (probably stand-alone external) elevator. Not just potential wheelchair users, even the older teachers whose knees protest against yet another ascent of two or three flights of stairs, would greatly benefit from such an addition to the school's infrastructure!

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!

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'. 

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.)

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!

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.

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? 

Fit any steps design

Throughout the past few `music seasons' in Chennai, I did not go to a single music concert although I am a `patron member' of the Music Academy and get sent a season ticket - for the simple reason of access problems. This year, my sister-in-law was bent on making a change in this self-denial programme. What she did was to find one venue which was accessible to me and my wheelchair. When we drove into the parking lot, I saw the inevitable two steps at the entrance. Even as I started getting hot under the collar, I saw her come with a couple of guys carrying this brilliantly crafted and ingeniously designed ramp,  yet so elementary an idea and easily and economically made. I thought this is the solution India has been waiting for.

The answer to our problems?

You will know why I am getting so excited by something looking so common and simple only when you realise the staggering number of people in India who think an inaccessible place becomes accessible if one puts a plank of wood on a flight of steps - even if it means a gradient of 1:1! I have been stupid enough once to go down down such an incline, and I thought that was curtains for me. Even last week, a colleague (one without any disabilities) told me of such an impossible ramp at a premier research institute in Chennai (not mine, but one I have referred to as a `sister institute' in an old post in this blog. Maybe Pramath, Sundar or Alok can teach some basics of access to the administrators? The internationally accepted standard for ramps is a minimum of 1:12!) While this may not work in an auditorium with a long flight of steps, it is certainly what the doctor ordered for a majority of commercial establishments which typically have anywhere between one and five steps from the pavement to the entrance.

What is attractive about this design is that it allows for custom-made ramps for just about every conceivable design. Even if a place has three steps of respective heights 4,6 and 2 inches, and width 4, 5 and 2 inches, the design allows for a make-shift ramp with a gradient of 1:12 (thus the base can be (4+6+2)x12 = 144 inches, i.e., 12 ft. wide) and removed immediately after use - rather than a base of 4+5+2 = 11 inches, whisch would not stick out much but could result in broken bones and expensive lawsuits!

On a recent visit to IIT Kanpur where I had been invited to give a talk, I had told my host and friend of more than 30 years now that when I had stayed,  long ago, in their Visitors House (or VH, as it is called by IIT-K folk), I had had a painful fall (fortunately without any long term ill-effects) which could have been avoided if there had been a few shrewdly placed grab-bars; and in response to my request, she arranged for the installing of such bars! But the ramp at the entrance to the VH was of the plank-on-step kind of design. I noticed and pointed out a couple of other places (such as in their auditorium) where there were a few steps which hindered smooth passage of my - indeed any - wheelchair. In response to her query on possible solutions, I showed her this design, and she immediately saw the merits and got a copy of the above photograph and sent it to the person in charge of the appropriate department, who promptly came up to me at breakfast next day to say these shortcomings would be remedied before my next visit to IIT-K.

If only our sister institutes in Chennai would respond as pro-actively!

PS: Can i be so impudent as to suggest to the MSJE that this be considered as (a) a possibility of creating employment for PwD who have some carpentry skills, and (b) make it mandatory on public private buildings to make their frontages measured and a job entrusted with qualified carpenters, preferably as in (a) above, and make themselves accessible at fairly minimal costs?

A beautiful place with ugly values

I am going to indulge in yet another bout of New Zealand bashing. Earlier, I had posted two accounts of how, flying completely against all available evidence, the medical assessors of that country had denied me a visitor visa for two weeks solely on the grounds that I had multiple sclerosis and was likely to be a strain on their medical services and finances - in spite of my assuring them that I would have insurance and even if the insurance company refused to foot the bill for pre-existing conditions, I had provided them enough evidence of solvency to show that I could pay for whatever damages were incurred!

And today, I find (on facebook) that the medical assessors have been up to their tricks yet again - this time to deny a residency status to a young son of a mathematician, who has already been on the faculty of the University of Auckland for some four years, because the son had autism! Never mind that the father was a respected member of the math dept there and had even been recipient of a handsome grant! The Vice- Chancellor of the university is quoted by The Guardian as saying he was was “an example of the outstanding young academics we must have at the University of Auckland if we are to maintain our premier world ranking”. Meanwhile, this mathematician reportedly had the good sense to say “I do not see myself raising my children in a country that does not respect the UN convention on human rights.” According to the president of the New Zealand Mathematics Society,  the departure of “an outstanding mathematician”  would be “a great loss for us and New Zealand”.

And this country is supposed to have been a signatory of the United Nations Convention on the Rights of Persons with Disability since early 2007! Do such grandiose commitments to a better tomorrow have no meaning? Should there not be a penalty levied on such obvious defaulters? The Guardian article cited above goes on, by the way, to say `In the year 2014/2015, Immigration New Zealand declined 116 residency applications solely on medical grounds. 

The disability rights commissioner, Paul Gibson, was not available for comment.' (I wonder how many of those 116 were persons with some manner of disability!)

This country seems to be blessed with a natural beauty that makes you go `Ooh' and `Aah'; but cursed with a Government whose human values make you go `sick' and `yecch'.

The Indian Government, also a signatory to the UNCRPD, is also threatening to go the Kiwi way by removing diseases like MS and Autism from the ambit of the `India-specific' clone of the UNCRPD Bill (called the RPDB) about which, also, I have bored to death the long suffering reader of this blog. I can only pray that my country, which claims centuries of a humanitarian civilisation, retains its humanity!

We can work

New developments are on to bring into law the contentious `Right of Persons with Disabilities Bill of 2014' (henceforth RPDB), which is an attempted India-specific re-formulation of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). In 2014 (the dying days of the Congress rule under Manmohan Singh), these efforts took various forms (some even resulting in a lathi-charge on peacefully protesting group of blind people). Fortunately many groups in the `sector' spotted and pointed out various potential pitfalls in the proposed RPDB, and more importantly, unacceptable deviations from and incompatibility with the UNCRPD, and the bill was forwarded to a Standing Committee. This latter committee made several recommendations, many laudable, while some fell short of the UNCRPD vision. Notable among these were the thorny question of legal capacity of people with severe disabilities, and the definition of persons with disabilities.

And now efforts are seemingly afoot once again to streamline and pass the RPDB.

While the UNCRPD is a model of inclusivity, the RPDB is a horror of exclusion. The former crisply says Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others while the latter has found some inexplicable way of concluding that there are precisely 19 kinds of disabilities. So if you are an Indian with a disability that is not in this shortlist, you cannot hope for any government subsidies, aids, etc.

It is against the backdrop of these shenanigans that one should try to understand the Pandora's box opened a few days ago by Ms. Maneka Gandhi.  To start with, the press apparently tried to report on Ms. Maneka Gandhi's comments on `the bill not laying criteria for determination of mentally disabled people'. Ms. Gandhi was reported to have said The bill does not differentiate between mentally ill and mentally disturbed peron. But there is a difference between the two. If a person is mentally ill like schezophrenic, how can he be given a job?

And that naturally got various groups `in the disability sector' up in arms. One hard-hitting response in the social media was called #wecanwork, where numerous PwDs (mostly mentally ill) sent in photgraphs of themselves carrying a paper/placard addresseing Mrs. Maneka Gandhi, mentioning their name, the nature of their disability, and details of the work they did. This literally blew up in her face and she made a clarification. She said: The newspaper article is entirely untrue. I do not make silly, loose comments specially when I have been minister for the disabled for 5 years and have made Acts that are in place today as well as having started Alimco etc. What I suggested at a closed door meeting of the ministries was that , instead of a gross mix-up of physically disabled, mentally ill. mentally challenged and diseased - all being lumped under the same category for the 3% reservation, we refine the list so that everyone knows the category in which they can get pensions / jobs. For instance , there is no point putting leprosy with autism. Leprosy is a disease and autism at its extreme level is a disablement. If we put leprosy in the list carelessly then we leave the door open to cancer , liver/kidney failure etc and make the 3% reservation a mockery. Regarding mental illness, I asked them to grade the different forms and see which can be employable and which needs a pension.

Our politicians should read the UN Charter on Rights of Persons with Disabilities (to which we have been signatory for many years now), which unambiguously states:

 (In the section on `Definitions'): “Discrimination on the basis of disability” means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation.

(In the section on General Obligations):  Appropriate authorities shall undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability.

If one wants to know the difference between inclusivity and exclusivity, one only needs to compare the vision enshrined in the previous two paragraphs and the Statements attributed above to Ms. Gandhi. (By the way, Ms. Gandhi, one of your experience should not use politically unacceptable language like minister for the disabled, and persistently refer to a person with schizophrenia as a schizophrenic or a person with a physical disability as physically disabled, etc.) 

I had also put in my two bits' worth in the `wecanwork' onslaught (even though I was one of the few people whose impairment was not a mental one), and I received a phone call at 16.45 hrs from NDTV asking if I could come to their studio at 1900 hrs for a live recording for NDTV 24x7. As I did not want to let down the sector by missing this opportunity to air our views, I hurriedly got my act together and rushed to the studio (after going in Friday evening peak hour traffic for more than an hour). I tried to find out if the studio was wheelchair accessible. After two people assured me on the phone that this was the case, I went there and reached the building at 18.50. There was a step to enter the building and another step to get to the elevator; and the elevator was too small to take me in my wheelchair. So I had to walk to the elevator and go up, and wait till other people brought up my wheelchair! Why do people always assume everybody can go up just two steps and that this qualifies as `accessible'? I had half a mind to say I can't come up because it is not accessible. Many of my good friends CANNOT CLIMB ONLY TWO STEPS.

Anyway, I go up, and am the only person in front of a camera although the screen shows four or five boxes of pople. The compere of the show starts by saying `the sector' vigorously objected to Ms. Maneka Gandhi's statement on unemployability of schizophrenics (sic), that Ms. Gandhi had denied having said that but had only said something along the lines of the italicised paragraph above, and the compere sought the reactions of `the sector' to this re-formulation; and  she began by soliciting my opinion on this. All I could think of saying then was that the trouble was with the definition of PwD; it could be inclusive as in the UNCRPD, or exclusive as in the RPDB, that the quota system had rules such as  individuals with xyz disability (people with x fingers, y toes and z feet) being only entitled to apply only for pre-determined jobs. I tried to say such ad hoc rules would disallow existence of more than competent contributors to their work such as cosmologist Stephen Hawking or game theorist John Nash (Nobel Laureate with schizophrenia).

But NDTV was true to form. The compere never came back for a second opinion to anybody  other than Javed Abidi, who concluded with the statement that the important thing was that now the job reservation quota had gone up from 3 to 5%. Almost like nobody else said anything else of import to the sector! This wretched quota system, which was `the important final point' commented on by Mr. Abidi, only serves to create schisms in `the sector' making people fight for the peanuts that are being thrown their way, rather than demanding that they be shown the entire menu and choose what they feel confident they can do justice to. Once again, a reading of the UNCRPD, in word and spirit, is called for.

A final note to our media friends: there is more than one respectable disability activist in Delhi; I do not mean any disrespect or offence to Mr. Abidi, but the press might consider occasionally inviting views from `a menu that also includes such wonderful choices as' Dr. Satendra Singh, Abba Khetarpal, Anjlee Agarwal, Shivani Gupta, ... - as well as many more if they care to look beyond Delhi to Bhopal, Mumbai, Bengaluru....! A change of diet never hurt anybody!

Indeed Msed out, and with absolutely no attempt at making it look otherwise

I feel almost naked baring all these details of my personal life to the world. But I am so livid at this moment, probably not unlike a woman who has just been raped! On the one hand, it is not too pleasant having  people coming to me to say they feel bad for you when they can have no conception of what leading a life fighting all the unpleasant consequences of your state (being a woman in the wrong place at the wrong time, or battling all the daily implications that a disease like MS imposes on a victim) without the further recent insult that has been added to the injury faced daily, by a totally inhuman attitude. On the other hand, I feel like screaming WTF from the rooftops and shaming the rapist. So let me give a blow-by-blow description of the things leading up to this latest insult - rejection of my application for a visa only because I have MS.

In an earlier blogpost http://differentstrokes-vss.blogspot.in/2015/11/will-it-be-msed-opportunity.html I had said my application for a visa to visit our daughter in New Zealand on our 25th wedding anniversary (in mid-December) was stalled by a statement that the medical assessors normally take 12 weeks to make an assessment of the medical records, which had incidentally been sent to them in late October/early November. Then I was informed on Nov 21st that the medical assessor had sent his initial comments (Applicant has multiple sclerosis with very limited mobility and requires significant carer support), with his reason (The applicant has a physical, intellectual, cognitive and/or sensory incapacity which requires full time care, including care in the community) and opinion (Likely NOT ASH), with ASH standing for acceptable standard of health! I was told, nevertheless, that my application had not been turned down, and I could make counter-comments and give an alternate medical opinion from a reputable doctor.

So I sent a long email accepting the offer to rebut on all three counts (comments, reason and opinion of the medical assessor) as well as providing alternative medical assessment from a reputed doctor. I quote the relevant parts of that email:

As for the MA's opinion regarding shortcomings in my intellectual or cognitive capacity, I should inform you that I am a mathematician of some international repute, as may be seen from my home-page at http://www.imsc.res.in/~sunder/ (maybe you should look up V.S. Sunder in Wikipedia; but that entry is old: I have now written 2 more books and more than 10 more papers since the date of the wiki entry). In fact, since my condition was diagnosed as MS in 2002, I have written four books and thirty-odd papers in research journals, as well as receiveing (one of only 120) Distinguished Alumnus Awards of IIT(Madras) from a total of some 40,000 alumni. Not bad for an intellectually and cognitively impaired dude, eh!

Regarding the comment `very limited mobility and requiring significant carer support', you can see from my passports (and from my home-page) that I have, on invitation, lectured and/or attended conferences in UBC, Vancouver, Canada in 2006, Max Planck Institut, Bonn, Germany in 2007, BIRS, Banff, Canada in 2008, Vanderbilt Univ, USA in 2010, Aberystwyth, Wales, UK in 2012, Berkeley, Calif, USA and The Fields Institute, Toronto, Canada in 2013; inside India, I have been doing almost monthly work-related travel to Delhi, Mumbai, Kolkata, Chandigarh, Bangalore, ... , always with my wife and care-giver, and have never had any health-related incidents in the past ten years and more that my wife and I could not handle, ourselves, as can be seen from copies of the MRI reports that I gave during my medical tests. In fact, in spite of my planned two-week trip to NZ, I have committed to attending conferences/meetings in (i) Bangalore in the first week of December, (ii) Chandigarh in the first week of January, and (iii) back in Chennai in the second two weeks of January.
Very limited mobility?

 As for the `likely NOT ASH' comment, I had certainly anticipated no trouble with a two-week visit to New Zealand, until I was hit by the reality that being an Indian with MS has necessitated my filling visa application forms and stating that I have MS, and facing this mountain of a bureaucratic hurdle. If I was an American with MS, then I would not have needed to fill a visa form, and no one would have  known that I had MS and was potentially `NOT ASH' until I strolled (or rather wheeled) into NZ!

An attached  scanned and attested copy of a letter from my neurologist  certifies in his concluding paragraph that  I `can travel to New Zealand or any other place'. My doctor is Dr. Krishnamoortthy Srinivas, who's letterhead shows that he is:

(a) an Honorary Member of the American Neurological Association;
(b) an Honorary Member of the American Academy of Neurology;
(c) an Honorary Member of the International  Neuropsychiatry Association; and
(d) Regional Advisor to the Royal College of Physicians of Edinburgh, Scotland (Tamil Nadu), among other things.

This should certainly qualify as a `medical opinion from a suitably qualified professional' which disputes your original assessment that I am not of an acceptable standard of health', and should go some way towards overriding your MA's verdict. Let me end by saying that I will be very disappointed if this email, with its attachment, do not suffice to let me be issued a visa. In that case, I would be forced to conclude that nobody from India with a condition like MS (not even if he were a Stephen Hawking) would ever be permitted to enter NZ - which would incidentally contravene at least five of the principles (listed below) of the United Nations Convention on the Rights of People with Disabilities, to  which NZ became a signatory on 30th March, 2007!

I ended the email by quoting the UNCRPD exactly as in the earlier bloodspot referred to above.

December came and went, and we consoled our daughter saying that we would, instead, try to come for her graduation. Then I received  a letter saying bluntly that my application for a visa was being turned down because the medical assessor had decided that I was definitely NOT ASH.

The medical assessors of kiwi-land are apparently far more accomplished and decorated than my doctor to see things in the future that he cannot!

Does being signatory to the UNCRPD carry no obligations? I urge the reader (and the Prime Minister and other dignitaries in the NZ Govt) to review the major principles (also listed out in the earlier blogspot) of the UNCRPD and form an opinion.