Just another way we are sidelined

Before long, our country is again going to undergo our caricature of democracy by going to the polls yet again. (The fact that we have to make the important decision of whether we prefer ineffective corruptness or a scarily macho version of Hindu fundamentlism is only going to surface in this piece insofar as to undeline point that surely our (at least) 30 million disabled people should have a say in which extreme they would find less intolerable.)

Let me narrate my experience of how I voted in the last elections. The local polling booth is quite close to my home, but getting there was another matter. We started off in our car, but it soon became clear that the crowds and the parked vehicles would make it necessary for me to walk far more than I could. So my driver suggested that we go back home and return with me on the pillion of his bike; and it was thus possible for him to ride all the way into the school where the polling booth was after doing some smooth talking to some cops he knew. In fact, one policeman even escorted me to the top of the line, and I successfully managed to exercise my franchise. And all this was possible because of my having a car and driver, in fact one with useful connections and a bike he could take me on. I get this red carpet treatment because of the advantaged section of society I find myself in. What about a huge majority of PwD (people with disability) who have the further handicap of being poor, and can often travel anywhere only when physically carried by a relative or friend?

Unfortunately PwD's are not seen as a vote bank. I think we should try to use our minority status in a way that can help us. Mr. Modi and Mr. Gandhi, if you are listening: I can assure you that if your party takes ramps, accessibility in buses, metros, etc., as a serious issue and actually do something about it, you can certainly count on my vote, and, I am sure, also those of a sizeable proportion of the at least 30 million PwD (not a small number!) I referred to earlier - unless of course you are convicted for grand theft or murder or some such grave felony by the time the next election rolls around.

Is there any hope for us ?

My last post was about the heart-warming story of a black kid born in a small town in South Carolina who had been born without either arm, but who grew up like `just another kid', rode around on a specially designed bicycle, then had a regular education as an engineer, bought the car of his dreams, did various necessary modifications, and now drives himself to where he works as an engineer in one of the better racing car outfits, and works by using a computer for all his designs which he does by operating mouse as well as keyboard with his feet. And I concluded that post with the rueful admission that such a success story could only occur in the US and the rhetorical question as to when/whether our society would ever liberate ourselves from our fatalistic shackles and preconceived biases to reach that attitude of inclusivity and eagerness to encourage a spirited young person to overcome adversity and lead an independent and productive life.

In this post, I provide a typical example of such shackles and biases which drives me to the sense of frustration that drives one to write a sentence such as the last one. On the one hand, our courts enacted the People with Disabilities Act in 1995 which promises that

The appropriate Governments and the local authorities shall, within the limits of their economic capacity and development, provide for:

ramps in public building;

adaptation of toilets for wheel chair users;

braille symbols and auditory signals in elevators or lifts;

ramps in hospitals, primary health centres and other medical care and rehabilitation institutions.

On the other hand, The Hindu carried a news item on the travails of a young woman who has been twice refused admission by the University of Madras to a distance education programme leading to an M.Sc Counseling Psychology. And here are the wondrous reasons given for this refusal:

• The woman is confined to a wheelchair owing to an accident having rendered her a quadriplegic for the past 15 years.
• The University officials believe she will be unable to attend the contact classes on the thid floor, and that there was no facility for disabled people to attend them.

Talk of brazen shamelessness. First you violate an 18-year-old law by not providing ramps in a building which has, by The Hindu's story, at least three floors. Then you possibly violate another law on the grounds of discrimintion by refusing a disabled person admission because you have already violated the PwD Act of 1995.

I feel particularly miffed because I have been writing, for a litle more than two years now on the issues of accessibility and barrier-free environments, with a personal bias to addressing these problems in educational institutions; and I read of this flagrant violation in the University of my own city!

Surely even a not very smart lawyer must be able to sue the pants off the officials of the University. Any takers? Please!

A must-see for all our educators, decision-makers regarding PwD,...

I recently saw the most stimulating and eye-opening video which, I am convinced is something that should be shown to all school teachers, as well as ministers and secretaries in our government who are supposed to represent the interests of people with disabilities (PwD). This short video, less than 8 minutes long, has so many lessons to convey, hence the tall claims made above. Unfortunately this video does not seem to have a usable link, and seems to be view-able only on facebook.

This video is about the life that was fashioned for himself, with the help of fantastic parents, by this son born to a black couple in a small town in South Carolina. Most people would think the child was already dealt a not very favourable set of circumstances to live in. In addition, this child was born without arms! 

An aside: I have not been politically correct, in using `black' as against `African-American', which seems to be the currently accepted term. I should imagine a people with such a wonderful colour, complexion and culture would want to proudly flaunt the use of the adjective `black'!

The atitude of the parents is absolutely enlightened and awesome. They see their beautiful child and swear that he will have the life of a perfectly normal child, `just like any other kid'. And enabling this to happen involves thinling `out of the box'  to create ad-hoc solutions to innumerable situations – like making it possible for the kid to open and use the refrigerator or microwave, using a spoon to eat, all by himself without needing anybody's help – and endowing the child with the grit, desire and determination to master the manoeuvers necessary to be independent.

The video goes on to show how he fashions a bicycle that he can ride. The highpoint of the video is when it comes to his desire to drive a car. His `I will brook no silly objection' attitude is never clearer than when he describes how people tell him to take a bus and his response clearly implies `why should I? I want to drive.' He puts on the helmet with visor, crawls under the car and operates a blow torch with his feet to make the necessary amendments to the car.

And then you see him driving his car (after using his chin to open the car, his mouth to put on his safety belt, and his feet to start the car) using his feet on specially crafted discs to steer the car. As he drives, you hear him say "people said `you can't live by yourself', `you can't go to school and graduate',  `you can't get a job and support yourself' "; and he goes on to say `I don't really listen too much to people when they say I can't do something; there's not a whole lot that is going to stand in my way'. When he gets to his work-place, where he has been working for more than eight years as an engineer with a crack Nasscar racing team, you see him removing his shoes so that his feet are free to manipulate the mouse and keyboard of the computer. (His boss says he knew when he saw his dossier that he wanted to hire Richard Parker; he admits he was initially curious about how Richard would manage, and later says matter-of-fact-ly that some people write with their right hand, others with their left hand, and Richard with his feet.)

What will it take to get our people to realise the importance of enabling such obviously very talented and determined people to achieve their potential? The mindset that is aware of the importance of not being fatalistic, and creating an environment which will not hinder and handicap people! Whatever negative things people may say about America, I can think of no other country where such a story could have been witnessed. 

As if we don't face enough problems...

What is it about being in some `position of power' that makes people feel they should create rules which do not exist, when they are confronted with people with disabilities (PWD) : Here are a few samples:

• My pet examples stem from my interactions from airline staff when faced with my desire to check my motorised (battery-operated) wheelchair:

1. Sorry sir, but you have to pay Rs, 4500 (or some such outrageous figure) for `excess baggage'; (the problem gets resolved only when I raise my voice in argument and a senior person from the airline, who knows that the rules guarantee free carriage of assistive devices intervenes and lets me proceed).
2. We have to disassemble the battery (even if it has dry cells); so can you please open it and show us. (Needless to say, it takes several minutes of discussion before the message can be got across that one cannot `open' this battery and then reuse it! This invariably results in my getting hotter and hotter under the collar: which is not quite what my doctor would recommend for what my physical condition needs.)

• This example is what triggered this post. There is this amazing woman (*) who, after some moronic doctor once (many years ago) gave her only a year to live, learnt somewhere that hydrotherapy would do wonders for her. As a result, she started swimming and even rose to the level of a former paralympic swimming champion. Recently, since her usual swimming pool was unavailable for some reason, her father went to enquire about a pool close to her home – and he was at first informed by the person working there that the pool could not be used by disabled people. This woman kept going for many days to reason with the junior employee, finally managing to get the phone number of one of the bosses. When this boss was finally contacted after 3 or 4 futile attempts, the boss asked her to try again as the junior had been appropriately advised. The junior employee this time asked an intermediary boss who advised rejection of the request. Finally it took a threat to approach senior Government Officials to get the powers that be to relent and say `come back tomorrow with a Doctor's certificate as well as the Championship certificate!' Surely all these ad hoc `rules' cannot be written anywhere, and are just hurdles conjured by a person unable or not desiring to take a decision in a `different' situation!

(*) You should see her blog