Saturday, 4 February 2017

Telling it like it is

This is the reality.

They will give us a divine name

Dole out wheelchairs and other aids and appliances at any given opportunity
to further their political career and to be seen as a great messiah.

Be patronising

Try to ruffle our hair (which we hate abominably)



BUT

Do they really care for us?

Do we exist for them?



Reality Check

*No mention of Disability in the Manifestos of the Political Parties (all)*

Is this something new?

Was there ever mention of DISABILITY in any political party’s Manifesto?


*Why*

For them

We are no vote Bank

We don’t exist



*Ponder, React, Act *


(My reaction to the writer of this email is:

You forgot you are such an inspiration to all of us after the comment about `ruffling our hair'.)

Wednesday, 25 January 2017

Why not just shoot all of us and show respect to our national anthem?

Our country is one of glorious contradictions.

On the one hand, we are one of the first countries to be signatory to the UNCRPD. This Convention states among other things that:

 “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; 

On the other hand, our Home Ministry demands, in spite of whatever the Supreme Court has decreed, that differently abled people should not move about when the national anthem is played in movie halls and should, instead, stay alert. So people with Down Syndrome, Cerebral Palsy or Autism can either not see any movies or be prepared to face the wrath of nation bhakths.

Shri Rajnath-ji, can you please explain away the contradicting demands of the last two paragraphs?
(See http://www.firstpost.com/politics/national-anthem-guidelines-for-physically-challenged-are-regressive-setback-for-disability-rights-3218032.html for all the gory details of how (y)our Sarkar works.)


Sunday, 25 December 2016

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.

Sunday, 27 November 2016

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

Thursday, 17 November 2016

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!)

Sunday, 16 October 2016

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;

Sunday, 9 October 2016

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!