Saturday, 30 January 2016

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!

Sunday, 17 January 2016

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 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 (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.