Saturday, 11 March 2017

Get up, Stand up, Stand up for your right

I just read this heart rending plea http://blogs.timesofindia.indiatimes.com/toi-edit-page/when-compassion-isnt-enough/ from a quadriplegic that our society make it possible for her to get out of her room, cross the street to join her friends for a meal in a restaurant, use her qualifications and earn a reasonable living, ... I tell you ; I am getting sick of this society where one has to beg for what is considered common courtesy, nay a fundamental human right, and of a government which continues to do nothing, but nevertheless keeps passing toothless laws and empty promises. How many countries will have the gall to sentence a wheelchair-using professor for having been a Maoist sympathiser without producing anything remotely like serious evidence? Maybe it is time for all of us to emulate his example and stop begging for scraps from a plate that should be our right, and start demanding it more aggressively.

And with the recent `de-monetisation' exercise, you have to keep withdrawing money from the ATMs or cash counters of banks which are all equally inaccessible for a wheelchair user. People like Satendra Singh keep fighting for empathy and accessibility, in spite of repeatedly being fed lies when they file RTIs, and still keep up the fight!

In my fury, I thought of Bob Marley, and  turned on a video of his classic song `Get up, Stand up, Stand up for your right, Don't give up the fight'. The energy and conviction he puts into what could well be `our song', is all the motivation `our warriors' might need in their ongoing fight with an unyielding establishment. Though it is still time away, I would like to propose the following strategy. I learnt during a discussion with friends on our contentious RPD Bill of 2016 that all public buildings have been given time till Dec. 28th, 2018 to render themselves accessible. Let us give due warning to our `Divyangjan' ministries that we shall send them photographs (with a timeline of Dec. 28, 2018) of such notoriously inaccessible places as Vigyan Sadan and New Delhi Railway Station and promptly institute legal action. Had my late mother been around then, that would have been her 99th birthday. She had always ben a great source of encouragement, even actively encouraging me to get myself a motorised wheelchair (hard as it must have been for a mother to see her youngest son's reduced state of mobility). I promise to take this battle right up to our mantri-log.

Saturday, 25 February 2017

For the times, they are a-changing

Once upon a time, the `elders' taught their children to be compasssionate and inclusive towards others less fortunate than they. The four links below (all to articles in The Guardian) are a telling commentary of our times. They show that, today, the governments of four of the more powerful countries of the `West' (USA, Australia, New Zealand, UK) are kicking people out of their borders. The mammoth slide, from Gandhi and Martin Luther King, Jr., to Narendra Modi and Donald Trump, seems to suggest a sort of inevitability of this very sorry state of current affairs.

https://www.theguardian.com/us-news/2017/feb/25/australian-childrens-author-mem-fox-detained-by-us-border-control-i-sobbed-like-a-baby?CMP=share_btn_fb

https://www.theguardian.com/australia-news/2017/feb/23/outcry-after-sydney-doctor-faced-with-deportation-over-autistic-child

https://www.theguardian.com/world/2016/feb/16/prestigious-academic-to-quit-new-zealand-after-autistic-son-refused-residency

https://www.theguardian.com/uk-news/2015/dec/22/widow-faces-deportation-from-uk-despite-being-92-and-frail

Hey Mr. Trump; take a leaf out of Ms. Mem Fox's book, and have your Homeland Security check out stories floating around about your wife not having been entirely truthful in filling forms in the past, and kick her out of America. That will be consistent with the four stories featured above.

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!)