The 3 E's for emancipation

Analogous to the so-called 3 R's of learning, I'd like to propose three E's for emancipation of a group of people who have been denied rights that others assume are `entitlements' of all people: education, employment, and entertainment. Before elaborating on the state of access of these Three E's to the PwD of India, let me begin by recalling that Section 1 of the United Nations Convention on the Rights of Persons with Disability (UNCRPD)  states that the purpose of the Bill is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. 

Education:

A professor of mathematics famed for his pithy pronouncements like `a picture is worth a thousand words' once said that `a measure of the civilisation of a country is the cleanliness of its toilets'. By his metric, the state of our civilisation is somewhere between non-existent and repulsively barbaric. Most children who have the privilege of attending schools (all of whose toilets are invariably dirty and stink), strain their will powers and bodies every school-day in order to not have to use the toilet all day till they return home. Imagine the plight of those whose bladders will not allow them this possibility (a not uncommon condition associated with various forms of disability). In a typical school in India, a child with locomotor problems will not have a wheelchair and will need to crawl to the toilet on a path that gets increasingly unclean - talk of `respect for one's inherent dignity’! And you can be sure that typical school will have no ramps or elevators, and several classrooms can be accessed only after negotiating one or more flights of stairs.  And colleges might only be slightly better, if that! A friend of mine who taught at the `prestigious' IIT in Mumbai told me that during every class he taught in a certain course in a certain room one semester, he would see the same boy being carried up the steps by the same friend! (I must admiit that, recently, another friend in the math faculty there proudly told me that every classroom in their department could now be reached by an elevator!

Employment:

Most employers would instinctively consider somebody with a discernible disability like cerebral palsy or Down Syndrome to be unsuitable as a prospective employee. At the other extreme, there are organisations like Cafe Coffee Day and Lemon Tree Hotels which predominantly hire people with a hearing impediment and Down Syndrome respectively. While the latter practise is laudable CSR, that is the kind of thinking that promotes special schools for people with specific disabilities, whereas all schools (establishments) in an ideal world would be non-discriminating and fully inclusive. Are there special schools for left-handed people or people who wear glasses? This is not to say there should not be concessions for people with special needs like ramps and elevators or reserved parking lots for vehicles of people with special needs. But such concessions will not work in an unthinking society such as ours, where it is the rule rather than the exception for an inconsiderate populace to park vehicles in a manner that blocks  access for a wheelchair to a ramp or park without batting an eyelid in a slot reserved for disabled people even when everybody in the car is completely able. Our Govt. tables a law whereby a percentage of jobs are reserved for specially abled but subject to peculiar criteria: for instance, a telephone operator’s job could be your’s provided you had only one leg or arm AND the job had not been given to so many such people as to have exhausted that quota. The first step to inclusivity is to embrace diversity as a virtue rather than regard PwD as freaks! 

Entertainment:

Surely, going to a play, movie, concert or a visit to the beach or going for a swim would all in qualify as enjoyment of one’s human right and fundamental freedom, but all these forms of diversion are denied to one who is constrained to a wheelchair. For another example, take dining out. More or less the only accessible restaurants are in five-star hotels, and those blow a big hole in your pocket. The same thing holds for `having a beer with the gang after a lecture’ (an integral part of academic life in many western countries). The web-sites of stand alone restaurants are delightfully uninformative about their state of accessibility. I was pleasantly surprised to find that Zomato took the trouble to state that some restaurants are wheelchair accessible - until I found that the only path to one such restaurant had two six inch steps. So, like the rest of India, `only a few steps' also qualifies as accessible for Zomato!

The route to learning

(A tip for the reader who does not have the time to read this entire piece : the three passages highlighted in bold italic font contain its essence.)

My life has been spent learning a complicated subject; and later, after having learnt some of the complex nuances of the subject, trying to disseminate what I have learnt to others who know even less about it than I do. And I have been through this cycle at least twice, with mathematics the first time, and then with disability awareness. And this is an attempt to distill what I believe is one key ingredient to making some headway in this business of learning, and to explain this by examples from both the careers I have embarked on:

Once you have a vague idea of the subject and a minimal maturity to identify the closest to a master of this subject that you have access to, get this master to guide you up the path you should follow to reach the desired goal.

First the math examples. The teacher (K.M. Das) of my favourite course during my M.Sc. used a beautifully written text book and helped me to pursue my doctoral studies under the guidance of the author (P.R. Halmos) of the afore-mentioned book. It so happens that when Halmos finished his Ph.D., he went to the prestigious Institute for Advanced Study at Princeton, although without any financial support. This IAS had only about 5 permanent faculty – Einstein, Godel, Veblen, von Neumann and such undoubted masters of their craft. von Neumann later offered Halmos a fellowship, on seeing the meticulous notes the latter was taking of the former’s legendary series of lectures on what he termed Rings of Operators and what the whole world now calls von Neumann algebras. (Incidentally, these algebras yield the mathematical backdrop for Quantum Mechanics, and have been my area of specialisation for the past thirty years!)

And now to my `second career’. As explained elsewhere, when I `came down’ with Multiple Sclerosis and realised that the system in India was not going to make any allowances for Persons with Disability (PwD), I embarked on my own campaign to try and sensitise people on the plight/rights of PwD. My initial sortie on this campaign was to write a bi-monthly column in the Times of India. An initially sympathetic Edtor gave my column a boost by putting ii up on the Op.-Ed. Page. This happy state of affairs lasted just a bit more than a year – until he had to cede the Op-Ed. Spot to others on his Editorial Board who had been wanting it for `more newsy items’. During that year, a large number of my readers convinced me that much more needed to be done. Rather than accepting his offer to publish my `column' in their e-paper, I chose instead to write my own blog where I could decide the length of posts and their frequency. A fortuitous set of circumstances led to my meeting a couple of masters of disability activism, Rahul Cherian and Vaishnavi Jayakumar. Although I did meet Rahul several times after that, I never had the pleasure of espousing any specific issue alongside him before a cruel stroke of Fate ended his life prematurely. I have written more on Rahul and that epochal meeting elsewhere in my blog – at http://differentstrokes-vss.blogspot.com/2013/02/a-giant-among-men.html.

I have been more fortunate with Vaishnavi, We have been on several campaigns espoused by the `Disability Rights Alliance’ (DRA), a group without any hierarchy, of people whose one common trait is a passion to fight for the rights of PwD. As I periodically bemoan in my blog, DRA has been repeatedly offering their combined expertise and their desire to work with with the Govt. before they hurriedly put up something which needs to be retro-fitted to account for erroneous construction – eg., the CMRL (which is yet another form of public transport which is unusable by people who use wheelchairs or are blind and might have the silly idea that they might travel alone), or the Museum Complex (where the tactile tiling employed would have led to some accidents for blind people if we had not got the engineers to let us do an access audit before they completed their accessification exercise).

Vaishnavi is a master at setting up such hierarchy-free organisations as DRA. She is probably best known for co-founding The Banyan. After branching out from the Banyan, she has espoused the causes of people afflicted by various forms of disability. It did not take much time for me to realise that she was a walking encyclopedia when it came to the problems faced by PwD, and clearly the master from whom to learn the ropes – various sign languages employed by people with hearing disability, enabling blind people to access the computer, specifications of international standards for ramps, hand-rails, disabled friendly toilets, do’s and dont’s in accepted etiquette when dealing with people with autism, the special requirements of people with multiple sclerosis or cerebral palsy… Recently she informed us that the Disability Commissioner of Tamil Nadu has changed from V. Arun Roy to B. Maheswari. It occurred to me that both the lot of the Tamil PwD and Ms. Maheswari’s tenure, in her new posting as Disability Commissioner of Tamil Nadu, will stand to gain considerably from her meeting Vaishnavi and talking to her for about an hour on the various faces of disability and DRA’s work. For, as Halmos demonstrated, it would be a case of looking a gift horse in the mouth to not use the fact that you are in the vicinity of a von Neumann.

Continuing this contorted analogy further, ground-breaking as his work on von Neumann algebras was, the man moved on to other things with even more fundamental consequences, such as the then newly emerging theory behind, and building of, the computer. Likewise, having seen The Banyan and DRA to a reasonably functional level – not to mention informing Arun Jaitley some basic facts about GST and their implications for PwD - the subject of Vaishnavi’s latest attentions caught her eye at (least as early as) the Chennai floods a few years ago, and during the current events in Kerala. Let me quote her on this latest foray, which is as relevant to the regularity of impending climate change induced natural disasters as computers are to current lifestyle.

A bunch of us have got together as a collective informal group called AIDER that will focus on the specific and yet oft-forgotten needs of disabled people before, during and after disasters.

Based on the Kerala government's list of emergency relief requirements for disabled citizens, Team AIDER has apart from directly contacting groups (to make their giving of aid more representative), released a Disaster Relief Registry where focussed contributions can be made with ease by individuals online based on the list of emergency requirements. The item will be delivered direct to the state nodal agency, The Kerala Social Security Mission who will distribute it according to urgent requirements they'd earlier mapped.

Time to #AbilifyKerala with AID for Assistive Aids ...

Visit www.bit.ly/abilify-kerala to ensure that no one gets left behind.

#DIDRR #KeralaFloods2028

Finally, trying to follow in her footsteps, may I take this opportunity to request the CM of Kerala to apportion at least 3% of the sum collected in his relief fund only for the purpose of helping the PwD affected by the rains?

On the proposed rise of the HECI from the ashes of the UGC

The future of our children is under grave threat if the current Govt. of our country has its way and passes this draft `HECI Act' which will hand over the control of their education from our academics to our bureaucrats. This draft Act reads more like a set of procedures required to be followed for changing your name which has been mis-spelt in your passport (almost surely due to some clerical error), than like anything that has to do with education. As it stands, the `Commission' is capable of and authorised to giving higher priority to include `fuzzy logic' than `free probability' as an elective course! (This jargon is merely to underline the fact that many people, who may not even know the meanings of these terms, might well be making such horrific decisions while framing the syllabus for advanced courses!)

As for the constitution of this commission:

Article 3(3) says The Commission shall consist of a Chairperson, Vice Chairperson and twelve other Members to be appointed by the Central Government. The Secretary of the Commission will act as the Member-Secretaryⁱ.

Article 3(5) says The Chairperson, Vice-Chairperson and Members shall be scholars being persons of eminence and standing in the field of academics and research possessing leadership abilities, proven capacity for institution building, governance of institutions of higher learning and research and deep understanding on issues of higher education policy and practice.

Article 3(8) shows that only 2 members need to be serving Professors of Universities, reputed for research and knowledge creation.

I seriously doubt the existence of 12 people who would satisfy conditions 3(3), 3(5) and 3(8) of the draft Act, and be likely to be hired as faculty at institutes of excellence like IIT(Bombay) or IISc purely on the basis of their academic credentials. 

Afurther ingenious feature of this HECI is the requirement of a yearly evaluation of academic performance of the HEIs (no doubt on a doc file in a prescribed proforma).The preparation of the necessary reports will eat into the precious little time available to faculty for research. As it is, faculty at HEIs spend increasing amounts of their time filing reports rather than doing research!

This suggestion/fait accompli is yet another instance of our govt.’s strategy of giving a new name to an existing concept or scheme, and not really doing anything later with it, except pointing to the creation of this scheme as one of their achievements. Disability activists are familiar with PWD being re-christened Divyangjan, Accessible India Campaign becoming Sugamya Bharat Abhiyan ...

I, for one, am totally opposed to this proposed `draft act'. As the Tamil saying goes, leaving education in the care of our babus is like a case of `korangu kaila poo malai' (ie, a flower garland in the hands of a monkey).

Already this govt. has changed the existing method, of direct payment of the paltry wages `paid' to research students in elite institutions, to their favourite toy, the Aadhar route (resulting in the monthly stipend typically coming in several months late!). The tension to which our young research scholars are being subjected is in stark contrast to the enthusiasm with which several of our aspiring scientists joined the March for Science held in major cities of India on April 14^th, 2018.

It may not be out of place here to quote from the appeal made by the organisers of those marches:

In India the concerted efforts by some interest groups to undermine science continues unabated. Unscientific ideas and superstitious beliefs are being propagated with accelerated pace. Ridiculous claims are being made about an imaginary glorious past ignoring the true contributions based on historical evidence. These are acting against the propagation of scientific temper among the people. Opposing them is a responsibility of all citizens as per Article 51A of the Indian Constitution.

Support for education in general and for scientific research in particular remains unbelievably low in India. While most countries spend over 6% of their GDP on education and 3% of their GDP on scientific and technological research, in India the figures are below 3% and 0.85% respectively. As a result, a large section of the country's population has remained illiterate or semi-literate even after 70 years of independence. Our college and university system is reeling under acute shortages of infrastructure, teaching and non-teaching staff, and funds for carrying out research. Science-funding agencies like CSIR and DST, pushed into acute fund crisis, are unable to disburse even committed support to students and research projects.

Let me conclude this rambling rant with three not unrelated observations/comments:

1. Compare the scrutiny undergone by the credentials of one nominated for possible fellowship of any of our science academies with those of any minister of MHRD; Does it make any sense to: (a) have the latter group decide on matters affecting the study of the former? or for (b) presidents of the academies to plead with a minister to leave education to people who have been educating generations for decades rather than to party loyalists?

2. Ayesha Kidwai has this to say in her scathing critique on this draft Act: 

In its Press Release, the government has cited the bill as “downsizing the 

scope of the Regulator”, “removing interference in the management issues of the educational institutions”, and "improving academic standards", but a reading of the Bill, actually reveals the opposite intention, that will have a disastrous effect on the access that India’s young people will have to higher education, As well as the creation of jobs in the education sector."

3. And the track record of our Govt. in translating a passed Bill into ground

reality is not too reassuring! For example, India's Rights of Persons with Disability was passed in 2016, while we became a signatory in 2007 to the United Nations Convention on the Rights of Persons with Disability (UNCRPD) - the purpose of which Bill is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. We are still in the state where a child with a locomotor disability is unable to go unaided to her school just a few blocks away in Delhi or Pune, for that matter, and is expected to attend classes on the third floor of a school without elevators? What price our Right to Education Act - which made education a fundamental right of every child aptly on April Fool’s Day of 2010!

MSJE101: Reasonable accommodation

The number in the title is to suggest that this blogpost might be part of a first course to our MSJE just as A101 might be a first course in algebra. The first chapter in the text prescribed for the course might begin with how the  UNCRPD defines this notion and go on to explain the terms used in this definition:

“Reasonable accommodation” means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.

Let me cut to the chase and get to my specific gripe. Briefly, as reward for my mathematical research accomplishments, I was chosen, about a decade ago, to receive a handsome fellowship from the Dept. of Science and Technology. This Fellowship allowed me to spend an almost obscenely large amount of money each year on my research - buy books, computers, travel for conferences anywhere in the world where I had been invited to talk, etc. Unfortunately, within a decade of my falling victim to multiple scleroses, I found that I needed to be assisted for many things - tying shoelaces, tearing open the little plastic/paper bags in which planes served you sugar, pepper, salt, after dinner mints, etc. All these stupid problems resulted in rendering solo travel unfeasible and my consequently having to turn down several invitations to international conferences dealing with precisely my areas of interest/expertise.

When I spoke to my then Director (normally positive and receptive to my needs re accessibility), he said I had best seek permission from the Secretary, DST - whom I knew from having served together for three years on the Executive Council of the Indian Academy of Sciences. As narrated in a past blogpost, http://differentstrokes-vss.blogspot.com/2012/07/two-for-price-of-one.html, he enabled me to have my wife accompany me on all work-related travel, with the cost of her accompanying me being met from the contingency grant component of my fellowship. In fact, he said that DST left the decision making to the director of my institute. And my then director was happy to interpret the rules in my favour. In fact, not long after, consequent to a horrifying experience (see my post http://differentstrokes-vss.blogspot.com/2012/01/breath-of-fresh-air.html) when we flew back from Hyderabad in 2010, my then director even consented to my request/demand that when we flew `on my fellowship', he waive the government requirement that when scientists were reimbursed for flights they took `on duty', they should fly Air India.

From that time to the date of my `super-annuation' last year, I enjoyed the reasonable accommodation, extended to me, via my then director, by that past secretary of DST, by permitting my wife to travel with me  to  academic conferences in Trivandrum (now re-christened  Thiruvananthapuram), Bangalore (Bengaluru), Kolkata (Calcutta), Delhi, Tirunelveli, Hyderabad, Kanpur, and even Berkeley, California and Toronto in North America, and Aberystwyth, in Wales, UK. I have advertised the broad-mindedness of my institute and of DST in extending this `reasonable accommodation' to me elsewhere in this blog and even in acknowledgements in the foreword to some of the recent math books I wrote.

Just as the phrase `super-annuation' reminds one of the phrases `use by' or `expiry date', it also seemed to galvanise the thus far silent auditors of the institute into keenly scrutinising the institute using the fellowship thus. This has had two repercussions: (i) my current director feels constrained by the auditors' qualms to have my wife's ticket covered by my fellowship; and (ii) the spectre of the arbitrary `Air India rule' again threatens to haunt me.

Even after `super-annuation' (in April 2017), I am apparently not perceived as being totally useless: thus my named fancy fellowship has been extended till the end of 2018; and I receive invitations to lecture all over India. But I will no longer be able to have my wife by my side to take care of the numerous personal needs necessitated by my `disability' or the freedom to fly Indigo which has taken great care of me and my wheelchair for many years, unless I pay for both our tickets from my pocket - even though my host institution would have promised, in their invitation to me,  that they would pay for my ticket, and there is all that money promised by my fellowship! And these `rules' of the Govt. are so arbitrary and not applied uniformly. For instance, the age of super-annuation is different in different institutions - 65 in the IITs and IISERs, and 60 in TIFR and my institution. (Even in my institute, I have known people super-annuating at 60,  a few at 62, a smaller number at 64, and even fewer at 65, these decisions supposedly being based on how productive they are perceived to be!) Incidentally there are three academies of science in India, and while the one based in Delhi insists on the `Air India rule', the one based in Bangalore apparently has no problem with their Fellows flying Indigo on `academy work'.

Let me conclude this long lament by explicitly pointing out how or why my being denied the accommodations extended to me by the old DST secretary and my former director is directly violative of the `reasonable accommodation' recommended by the UNCRPD.

To put it in a nutshell, I have spent 46 years of my life doing mathematics, in the process acquiring a specialisation with a flavour created uniquely by my particular trajectory in the study and research in my areas of specialisation. A mathematician at my level of expertise/competence would consider the freedom to participate, in conferences all over the world dealing with areas where (s)he has something to learn as well as contribute, a fundamental right. To exercise this right, I would need India to modify her rules so that whenever I am invited to attend a meeting/conference, I should be able to fly with my wife in a carrier of my choice, and have both our bills paid by whoever invited me. This should be done if India claims to be a signatory to the UNCRPD.

Pearls before swine, leading horses to water, when only man is vile, etc.

IMAGINE: if

(1) public establishments - banks, restaurants, grocery stores -
could live up to their frequent promise to `assure you of our best
service at all times';

(2) if the you in (1) above included older people with locomotor problems,
even people with some manner of disability - locomotor/vision/hearing;

(3) that all the people mentioned in (2) above had access to all
facilities - electronic machines, toilets, ... - available to `normal'
people;

(4) and if all this could be achieved by an email which would
get people with the expertise to take one look at the establishment
and tell you just what needs to be done.


Guess what! this is and has been possible in Chennai for many years. The
Disability Rights Alliance is a group of people who have been freely
offering such advice for years - without even charging for travel costs incurred - and it has been a case of pearls before swine. People say `sure, this has got to be done' but have done nothing! Like `taking a horse to water, but ...'.  I should stop maligning animals unnecessarily, when only man is vile!

I guess the problem is that DRA doesn't throw in a few ramps and disabled
friendly toilets for free! Anyone heard of  CSR?

Anyway, the offer is still there: interested people have only got to look
up DRA with Google's help and send that email!

The cause for this rant is that I have been having problems with both banks I have had an account with for years and have spent the last two days in their parking lots in the Chennai mid-May sun. Here is a photograph of the Adyar branch of one of those banks which explains why I was at their Mylapore branch yesterday - which branch had the inevitable `only one step'! When will people realise that anything at least as large as one is inaccessible for a wheelchair user? Why should ALL branches of ALL Banks be inaccessible?
   

is

Open letter/plea to Mr. Pronoy Roy

Dear Mr. Roy,

I would like to ask a favour of you. Let me first introduce myself properly. I am (was?) a moderately accomplished and suitably decorated mathematician twenty years ago. Then I got multiple sclerosis 15 years ago, and slowly lost mobility. Ever since then, I have devoted a fair amount of time in disability activism. Incidentally, there are many such activists spread all over India, e.g., Shivani Gupta (Puttaparathi), Dr. Satendra Singh (Delhi), Vaishnavi Jayakumar (Chennai), and Muralidharan (Delhi) - all a lot more progressive minded than just about the only person with disability (PWD, from Delhi) who is ever consulted by the news media, including NDTV.

It is true, but rarely highlighted by the Press, that PWD have suffered at almost each of the series of brainwaves inflicted on the nation by the Modi-Jaitley duo, for instance:

(a) Demonetisation: did they spare a thought for a wheelchair user being forced to go at least once a week to a bank whose branches and ATMs are invariably totally inaccessible, or a blind person who suddenly has to deal with a new set of notes where notes of different denominations cannot be easily distinguished;

(b) Aadhar linking: People with various kinds of disability have difficulty in
recording a clear set of fingerprints: eg., a leprosy cured person may only
have a stump!

(c) GST: We saw calipers, wheelchairs and prosthetic limbs being taxed at 18%, while Agarbattis incurred 0% tax.

(d) Public transport: Wheelchair users like me have no access to public transport: the floors of metros and platforms do not match, it is impossible to get on a bus or a local train... We have to go by autos; and the rise in petrol/diesel prices does not make this an attractive option, especially when your disability makes it difficult to be gainfully employed.

(e) The whole issue of playing the National Anthem at the end of a movie when wheelchair users got manhandled for not standing up and marking their respect for the flag or got shouted down by apoplexic generals for not keeping their hand on their chest during the playing of the anthem.

(f) Budget: The budget has made no mention of provisions to fulfil the promises inherent in the RPD Bill of 2016, the Accessible India Campaign or Right to Education. Where are the funds to make a promised number b of buidings in c cities accessible by the end of 2018? (Incidentally the numbers b and c are woefully small and inadequate to make the large number N of our towns truly accessible!)


Now for that favour: I would love to see NDTV run a show (of the sort used in the Major Bakshi apoplexy episode discussed in (e)) with Modi and Jaitley occupying two of the six boxes and being bombarded on issues as above by Shivani, Satendra, Vaishnavi and Murali (occupying the remaining four boxes).

Looking forward to an early and positive response,
Thanks, and regards,
Sunder