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!

Sunday, 28 August 2016

Super-moms

The reader of this blog would know that I try and get together with `DRA' periodically on matters related to accessibility, inclusivity in society, etc, in short, on disability activism. One of the members of this group has started on a project, which involves meeting on the `Beach Road' in Besant Nagar every Sunday morning from 06.30 to 08.30 when cars and bikes are prevented from using that road, where she aims at sensitising people on the merit of, and crying need for, inclusivity in our society.

I have been giving this a miss so far since my driver had recently become a father, and I did not want to disturb him at least on Sundays. But this time, Bhavna had promised to create a history - on posters - of disability awareness and support in Chennai; and she had got Ms. Poonam Natarajan to help trace the history of inclusivity in Chennai. And this I really had to see, so I requested Sekar to take me and my wheelchair to `Bessie'.

I did not expect anything less from Bhavna: everything was done with impeccable taste and clarity. But this post is not about her. You can read about her in, for instance, http://www.thebetterindia.com/4655/tbi-inspirations-she-cannot-walk-talk-or-write-but-young-bhavna-botta-is-a-successful-entrepreneur/

I want to write about something that struck me tangentially, as it were, and that I wanted to share. Everybody has heard the sexist condescending statement that `behind every successful man there is a woman'. I thought, instead,  of the fanatastic `never-say-die' mother behind every person who has overcome terrible hardship to even have a chance of a reasonable life.

I saw at least four of them today who, in their own ways have contributed to making this world a far better place than they found it: Poonam Natarajan, Kalpana Rao, Sumithra Prasad, Mrs. Sadasivan (whose own name I am ash amed to say I have never heard or known). All of them were faced with alarming news about a child of theirs having a life-long health condition that might prevent their leading the typical care-free and happy life everybody prays is in store for their children. And they politely asked Fate to go to hell, and set about giving their child the life of their choice.

These women would not be cowed down by a cruel fate. Not only did they try to help their child face their problem, they gave something to society that can only come from one who has unergone a trial by fire.The actual nature of the health problem of the child is not pertinent for this post. What does matter is that in spite of hours of lost sleep due to worry and hours spent at the doctor's, through their support of their child, they have, by their strength and courage of conviction, helped set up systems which will help many future children suffering the same fate as their child.

Poonam akka gave us what is now called Vidya Sagar (and originally, the Spastic Society of Chennai), Sumithra Prasad (who got today's event going with a great spirit of positivity, introducing herself as a special mom of a child `with special needs') started her SAI bakery, about which you can read in http://www.thebetterindia.com/22773/sai-bakery-chennai-adults-with-special-needs/>, while Kalpana and Mrs. Sadasivan have given the world Bhavna and Smitha, two of my live-wire friends from DRA, both of whose energy levels leaves me panting. I have only seen Bhavna's mother when her services were needed to communicate with Bhavna. Today, I walked up to her and congratulated her, and she dismissed it in her disarming and self-effacing manner, saying it was all Bhavna's doing. She was referring to this event and I was referring to having helped Bhavna become the woman she is today. I feel the same way about Smitha's mother, as Smitha herself has mentioned many times when interviewed by the Press.

Which leaves me with the thought that if most mothers - and fathers -  would instinctively remove a barrier in the way of their child, why is it virtually impossible to make this world accessible and inclusive towards people with any kind of disability? The same `us and them' garbage that is thrown around by the Trumps and Hindu fundamentalists of the world!

Tuesday, 16 August 2016

What is this thing called independence? (Apologies to Cibber)

I just want to describe a normal day in my life in independent India. As my apartment is not really accessible to my wheelchair, my going and making myself a cup of hot coffee in the morning is not really too comfortable. In fact, doing anything in our kitchen is quite an effort, so usually my wife sweetly does everything - from cooking to cleaning up afterwards. And because my fingers are not particularly supple, I even need her help for opening plastic wrappers or the foil in which tablets are packed; so I have to leave that as just more of those things she has to do for me. But my wife does it unquestioningly and affectionately.

The next phase, after I have somehow managed to bathe and clothe myself, is still not so bad. When I need to go to the institute to work, my driver Sekar comes home, and I need his hand as well as the crutch in my right hand to hobble downstairs to the car. We get to the institute and Sekar drops me at the institute gate (where I have this arrangement with the security guards, whereby they have previously been told by when I will need the battery of my wheelchair charged). I hobble from the car to the wheelchair, and drive across to my office in it, and am able to function with a modicum of independence. I do have some troubles, however, with the recently constructed guest house canteen which has its share of (i) dining halls which allow very few possible spots where I can sit in my wheelchair and eat, and (ii) doors which automatically swing shut or which are bolted so I can get through only if somebody holds the door open for me.

And if I have to go out somewhere (to eat, for instance), I need Sekar to disassemble and then load my wheelchair in my car to take us to the restaurant. And now if that restaurant is not in a five-star hotel, you can be almost sure that there will not be ramps to permit a smooth ride. (And this is after Sekar has taken my wheels out of the trunk, reassembled it, and assisted me from the car to the wheelchair.) More often than not, some number of steps will have to be negotiated while somebody assists me (typically by grabbing some part of my body without bothering to ask me if I need assistance, until I have passed the steps).

And I am able to do even this much only because I can afford to have a car and immensely resourceful and helpful driver. Now if I was not so fortunate and had to use public transport, I'd have no choice but to sit at home all day and drive myself and everybody around crazy.

And Shri Modi, our Prime Minister, you who seem to have no trouble in having access to my phone number to send me a message `wishing me a happy independence day' and giving me a link to where I can hear you speak on the occasion! How do I get to write to you to tell you that I hope you can have a taste of the frustration of a totally dependent existence which one need not have if only our rulers took their commitments to being signatories to the UNCRPD a little more seriously? Have your appropriate ministries pay attention to the hundreds of things they need to do rather than invent new names for existing ministries which lead to new ways of not completing the pile of tasks needing to be done. You who are supposed to `get things done', please subject each bureaucrat/minister in MSJE (which you are attributing divine powers to) to spend the first month in office by alternatively having to move only in a wheelchair, or walk blindfolded, or with their ears completely stuffed so they cannot hear anything. In short, it is time for all you glib talkers to WALK THE TALK.

And you want to know something? That which robs me my independence is not my physical condition due to having contracted Multiple Sclerosis, but the barrier-ridden environment and the exclusive mind-set of the citizens of India (or Bharat, if you prefer that).  It is not just the rich and `advanced' countries like USA or UK which permit people with disabilities to function with total independence. My recent visit to Bali in Indonesia showed me that even countries where our Rupee is not an insignificant amount of money showed me that you can be generous and inclusive in even such a country. So, as a great man once said, `LET MY PEOPLE FREE'. 

Monday, 11 July 2016

Accessible India - a pipe dream?

A few days ago, the Economic Times in India cited this news item, whose second pargraph has the telling line which describes `Accessible India' as the Prime Minister's pet initiative. (If this is the status of his pets, imagine the plight of his not-so-favourite people/animals!)

If you want to make a study of status of educational institutions in India, wouldn't it be a good idea to study practices of the more successful ones (like the Indian Statistical Institute or IIT, Mumbai) rather than confine oneself to the self-financing colleges of Tamil Nadu? I hear that the study cited above only refers to buildings in a list prepared by Accessible India Campaign.

When I asked around, I found that the Govt. has adopted a typical bureaucratic and unimagintive procedure doomed to failure. The Govt. asked the State Govts. to give a lit of the most frequently visited public buildings. The Auditors were selected through a bid by the Government on the basis of their experience and competence.

On the other hand, imagine a scenario where an imaginative photographer makes a five minute walk through video of Arushi, Bhopal and Vidya Sagar, Chennai, and follows that up with inaccessible metros and reilway stations; and then draw up a list of respected people in the field (Anil, Vaishnavi, Shivani, Anjlee, and NO ministerial type, maybe a respected IAS officer) to draw up a game-plan. That will make the task at hand clear as mud.

For instance, I just received a message on WhatsApp about 350 `no-frill airports' coming up at one shot. (What we do not want is a mindless repeat of endless inaccessible elections. Recent experience shows that if there was any improvement in the recent local elections, it was because of the initiative shown by vaerious groups of PwD.) Immeditely, there was a flurry of messages on WhatsApp by `the community' suggesting ways and means of creating an `accessible airport template manual or the Aviation Ministry to send out to these 350 airports'. (One has to just compare this with the desire and urgency shown by the Gehlots and the dignitaries of the Divyang Ministries to do something similar before another opportunity goes down the drain.)