Who is mad?

Times of India, August 18, 2012

This piece is related to two milestones. Let me quickly dispose of the first, personal and more pleasant one. It is almost exactly a year since this column came into existence. This is a happy milestone, as writing this column has brought me into contact with so many people and shown me another side of life. My first piece, published on August 20th, 2011, was a questionnaire which is at least as pertinent today as it was then.

The second `milestone', on the other hand, marks one of those countless disgraceful incidents that need the boundary conditions and abject insensitivity of `Incredible India' to happen. Almost exactly a decade ago, on 6th August, 2001, twenty-six people burned to death at Moideen Badususha Mental Home, Erwadi, Tamilnadu because they could not escape the fire, on account of having  been kept chained up when the fire broke out. (Please also see the article in ToI, August 16th by Hussain Kodinhi, and accompanying details of `manacles of mental health'.)

And just to show the world that we were still keeping our hand in, barely about a month ago, on 11th July 2012 , the body of a young woman was found buried within Dulal Smriti Samsad, a home for mentally disabled at Gurap, Hooghly, West Bengal. In fact, once investigation into this  this last manifestation of depravity started, more such bodies were also unearthed. 

Which nation can stand tall and lay claim to all the following mind-blowing characteristics:

• Cities like Delhi and Chennai vie with one another for the maximum number of weekly casualties due to road accidents.
• The (lack of) road etiquette of our drivers is trying to surpass itself by exterminating the elderly by simply bumping them off in road accidents; an elderly (wo)man going for a walk on a sidewalk is easy prey for the sufficiently committed. 
• A week doesn't go by without some drunk driver running over that poor `vagrant' who had the misfortune of having chosen that spot for sleeping on the pavement!
• Rather than taking them to school, our schoolbuses run over children on a practically daily basis.
• Publicised statistics show that more than half our women have been subjected to physical and sexual abuse at the hands of their own relatives.
• Young men routinely lace drinks of an unsuspecting female acquaintance with some drug, then gang-rape her, capture this bestiality on their cell-phone cameras, and later try to blackmail the poor girl with threats of publicising her indignity.
• Gangs of hooligans  of the same ilk often turn to `moral policing' to maintain the `decency and purity of our culture' by harassing and pawing young women, be it in Guwahati or in Mangalore.
• One dreads to imagine what a `mentally ill' woman, kept under lock and key, will be subjected to by her `attendants'. After all, doesn't one often read of policemen getting their jollies with women under `lock-up'?

Not surprisingly, people striving to improve the cause of mentally ill people in our country, ask how long will WE, who are not residing in asylums or such Homes, claim that we ourselves are Sane? and say that  on this 6th of August, we are joining hands with other groups to think about those human beings who are shackled and take a pledge to demand the right to positive mental health of all.

Let me conclude this sorry litany of manifestations of our national collective mental sickness on a positive note by thanking Vaishnavi Jayakumar for suggesting  that I use this column for publicising the passage of a decade after Erwadi and let me salute her for her decades of examplary service in the cause of the mentally ill in particular, and people with disabilities in general.

What is not accessibility

Times of India, Aug 04, 2012

I was witness to this classic equivalent of a `self-goal' in the cause of disability sensitisation. As part of their ongoing efforts to bring world-class neurologists to come and lecture to us right here in Chennai on various issues, our local (and quite distinguished) neurologists had organised a conclave and a lecture by an American expert , on the topic of Multiple Sclerosis. The hotel seemed to have put the odd ramp in place in what seemed an eleventh hour afterthought. The ramp at the entrance was probably of more than the maximum slope safely navigable by my motorised heel-chair. The ramp on the second floor could only be scaled because somebody manually steered the chair from the back.


By the time we entered the room where the conclave was in progress, the hall was filled as far as eye could see with chairs draped in white-cloth; the problem was how to move even five feet away from the entrance door. Somebody spotted my plight and moved some chairs so I could progress a few feet till the next bottleneck and the next good samaritan to help me get past that one, and so on, until we eventually found our way to one of the tables up front, where I saw three other wheel-chairs and felt less of a freak.

When we finally settled down, the secretary of the Multiple Sclerosis Society of India was finishing her report. The next speaker was a young man on crutches who had to painfully hobble his way up the dais - one of my more hated constructs of modern society - to the microphone, where he made many good points.

1.  He raised the issue/slogan of  `nothing for us, without us'; i.e., if you wish to do something for the betterment of the lives of PWD (people with disabilities), do so {\em only after} ensuring that there are such PWD in the organising committee for such intended reforms. (When buildings, such as the hotel this event had been held in, attempt to render themselves accessible by putting in the odd ramp, can they please talk to some experts in the area of accessibility-related matters, and get meaningful advice on such things as acceptable norms for slopes of such ramps? - (author's remark)
2. Before buildings, in general, (hotels, etc.) become accessible, can at least our hospitals and labs which run all manners of health-related tests, make efforts to have devices to facilitate PWD, for example, to get on to beds and high places they need to climb onto in order to have X-rays or MRI scans done?
3. Will all hospitals have at least a few people conversant with standard sign languages to play interpreter between the doctor/technician and hearing/verbally impaired patients? 

When an event is being organised to specifically address a certain disease/disability, does common sense not suggest that many victims of the supposedly target audience will obviously have a common disability (resulting in being on a wheelchair in this case), and should care not be taken to ensure that the event is organised in a barrier-free environment? (Will we ever see one of these?); and to treat these `victims' as `chief guests' and ensure that they have a clear path to a position from which they can get the benefit of the views of the experts on their disease, brought at great cost to the exchequer, regarding their future lives, however long that may be.

And if you ask a PWD to come and speak, is it not your responsibility to ensure that (s)he is not inconvenienced in any way in the process of making that speech?

Two for the price of one

(I am sorry my usual article in the newspaper column could not appear today due to some misunderstanding about acceptable length of article, etc. But I decided, nevertheless to put up the piece in my blog.)

I want to give a different slant to the phrase in the above title, which is customarily used as a ploy by merchants wanting to induce customers to buy their ware(s). I, on the other hand, want to celebrate the fact that this column has just completed one year of existence, by making a plea for a similar discounting practice', to  appropriate quarters in our Government.

To set the ball rolling, let me recall something I learnt close to forty ago when I was very impressed by the implied sensitivity of our Government. A friend of mine in College was blind, and he told me that when he had to travel, not only was he entitled to a concession in view of his visual impairment, but even that if he wished to take another person with him, the two people could travel at the same cost that any one `normal' person could travel on. I remember thinking then that it was wonderful that our Government was so sensitive as to entitle him to an accompanying person to give him any desired help without having to pay essentially anything extra for that person's travel!

Much more recently, I was to remember this fact to good effect. It turns out that I have, of late, been receiving a named fellowship which entitles me to a contingency grant which is so generous that it can cover a lot of my travel costs (related to my academic work, naturally), even including some amount of international travel. However, due to my own mobility constraints, I found that I was turning down several invitations to conferences. Then I remembered my friend having been at the receiving end of the entitlement to take along a `carer'. So I asked the director of my institute if I could not also be the recipient of such a benevolent provision. He said I should ask the agency (DST) which funded my fellowship if that was acceptable. So I wrote to ask the big man (the then secretary of the DST) if it would indeed be acceptable for me to take my wife with me whenever I travelled on work - and charge the cost of her travel also to this fellowship - as I am constantly in need of her assistance. To my great relief and unexpected pleasure, prompt came the reply in the form of an unconditional green signal. So, I have been able to maintain a fair amount of my academic activity which involves travel, this having been unthinkable but for this far-sighted official, who behaved unlike so many of our bureaucrats who demand of disabled people that they produce a certificate at periodic intervals of time which certify (with the necessary attestation of some large number of dignitaries) that they still suffer from such-and-such handicap!

It goes without saying that I am exceptionally privileged to have such accommodating bureaucrats to deal with. This is not necessarily the case in even all reputed research institutions. It has been my endeavour, for some time now, to use whatever leverage I might be able to extract from such recognition as I have in the academic world in India, to bully people into  conducting access audits of their campuses. I use this column (quite shamelessly at times!) and whatever powers of emotional blackmail I can rustle up to achieve the desired end. Some time back I employed such `hitting-under-the-belt' tactics with a sister Math Institute in Chennai, and they have been very responsive and are in the process of having their campus audited even as I write. I tried to use this as a lever to suggest that a reputed science institute in Bangalore ask the accessibility expert (whose travel from Delhi to Chennai and back had  been funded by the institute in Chennai) to conduct a similar exercise at their institute now, as they would only need to pay her Chennai-Bangalore-Chennai airfare. I have been cribbing to the mathematicians at this institute that I cannot access a single lecture room in their department, and they have been promising me that they will fix this. I am told they recently went through a `renovation/expansion' of their department, but they still do not have an elevator to facilitate my accessing any of their lecture halls. But my hope of their getting the expert from Delhi to help them clean up their act was dashed for the simple reason that their accounts people did not see any reason to pay for two plane tickets to get somebody to come and do the desired exercise, rather than getting some expert from Bangalore - which they have not done for decades/centuries! The fact is that this expert is wheel-chair-bound and needs a `carer' to travel with her.

The purpose of this article is not to merely give bad press to  this Bangalore institute, but to ask why the Government should not have the rule in place for air travel today that they had at least 40 years ago for train travel - which is to enable a person who needs to travel with a carer/attendant to travel with that carer at the cost of one ticket!  (After all, the cost of a train ticket then, would probably buy more than a plane ticket today!)

If a relative of a President or Union Minister can make routine trips abroad at the taxpayer's cost, can't this perk be extended to a care-giver of a scientist, and in fact, of just any Indian citizen who needs such an attendant?

Time for some sensitivity

Times of India, July 14 2012

 The responses I have had for one of my recent articles in this column - on the travails of the hearing impaired - have been a real eye-opener. It is almost as if the flood-gates had been waiting to be opened. Let me reproduce some of these, to give you an idea of just how long the authors of these emails must have been bottling up various causes for frustration and anger.

(a) A mother of a hearing impaired son writes:

It is so true that  ‘hearing impairment is not overtly visible to people’ and because of this it  is not even considered an impairment vis-a-vis physical impairment/ mental impairment  or visual impairment.  Actually it is a double impairment – not being able to hear clearly and not being able to speak clearly. There are many hearing impaired who have overcome their disability with the help of technology, support of care-givers and enough financial resources to use the first two. Some tips that might help a normal person communicate with a hearing handicapped person effectively are:

• Get the person's attention before attempting to talk or communicate.
• Stay in their field of vision. Make eye contact.
• Establish the gist of what you are going to talk about.
• Your speech will be more easily understood when you are not eating, chewing, smoking, etc.
• Keep your hands away from your face while talking.
• Don't talk too fast.  Pronounce words clearly.
• Have them repeat the specifics back to you. Many numbers and words sound alike.
• In case of failure in communication,  try to find a different way of saying the same thing, rather than repeating the original words over and over.
• Keep a note pad handy, and write your words out and show them to the person if you have to.
• Use gestures and visual cues.

And she also adds:

A program ‘Sathymev Jayathe’ highlighting the problems faced by People with Disabilities, would have been truly more touching if it had had sub-titles for the hundreds of hearing impaired who were watching the show. This show which is creating awareness about so many issues would have been interesting for these people also.


In fact, more of our TV shows (News, Sports channels covering topical events like IPL, Wimbledon Championships, UEFA Euro Cup, etc.) should seriously consider close captioning their telecasts!

(b) A teacher, with a hearing impediment, says:

I am a deaf person since childhood. In my early childhood I was left to my grandmother. My most beautiful memories are associated with her. That illetrate lady with her unconditional love has given me so much strength that I am capable of handling any adverse or favourable condition with appropiate attitude. I am a faculty in my organization.Though as a matter of its policy, deaf people are not assigned to be a faculty, I was adamant to be one. Now for me every new batch for training is a new challenge to handle. When I enter a classroom with hearing-aid chord dangling on my chest and masking units  inserted in both my ears, I find it a thrill to observe the body language and facial expressions of all participants. How different we human beings are in our reactions to physiological inadequacy of a fellow human!

It is apparent, from such an outpouring of sentiment, that there is a whole section of people whose problems have been ignored/overlooked for (too) long, only because their disability is not overtly recognisable as one, and that it is high time that `normal people' started being more sensitive to their problems!

Whither universal design ?

Times of India, June 30 2012


Two  words  I have been hearing a lot of late have been  `universal design', which encompasses other phrases such as `accessibility' and `barrier-free environments', which I have been concerned with especially after I started having to use a wheelchair for most activities needing my moving around a bit. The fact that my extended family includes a large number of architects had ensured that I had heard of the `National Institute of Design' at Ahmedabad as being the Mecca for design of various sorts. Also contributing to this knowledge was the fact that a close family friend for several decades had been the late Dashrath Patel, the first director of design education at NID.


A few weeks ago, I  heard about a fellow wheelchair-user who had applied for and been selected for the Graphic Design course `under PH category'. Although the institute recognised the existence of such a `PH category', its designers do not seem to have done so. Going by the description one finds in the blog vishalsaw.blogspot.in maintained by Vishal, our would-be designer on a wheel-chair, most of the classrooms as well as the rooms in the boys' hostel are on the 1st, 2nd or 3rd floors; and the main buildings  have no elevators. To be fair to our designers, they apparently do have some ramps  on the ground floor, but they seem to have decided that nobody in a wheel-chair would need to go any higher!


Before dashing off a `fire-and-brimstone' article to ToI, I thought I should discreetly check with Vishal about his subsequent experiences with NID, and learnt of the refreshingly encouraging reception Vishal seems to have been receiving from the administration; they have already built some ramps in the hostel and campus areas; they have commenced building a room in the hostel for people like Vishal; they have identified a place where a new elevator will be built. It is only fitting that NID should lead by example  for others to follow.


Not everybody is as lucky as Vishal. In fact, not long before  I  first heard about Vishal and NID, I had also heard about a visually impaired person studying Computer Science in an Engineering College affiliated to Anna University, Chennai, being told by the University officials that technical professional courses like engineering are not for visually challenged people and asked to go out of the college without spoiling the results of the college. I would be very surprised if his college in Erode was anywhere near as sympathetic as NID.

Let me conclude with this amusing tidbit, that people like Vishal need to pull their weight to make a reality before long: (I hear he has already started in the right direction and is preparing to start an NGO called `Give some space'! You can find more about it at https://www.facebook.com/pages/Give-Some-Space/174785352584221)

The `Guidelines and Space Standards for Barrier Free Built Environment for Disabled and Elderly People' prepared by the Central Public Works Department, Ministry of Urban Affairs and Employ- ment, India, 1998, says, among other things, that:

The scope and responsibilities which have been identified in various organisations will include the following:


ACADEMIC INSTITUTIONS


 There should be a conscious attempt of all educationists to develop young architects/planners with an awareness of creating barrier free environment for physically handicapped.


A detail design exercise should be carried out in all schools of Architecture in their curricula as an essential subject of architecture education.


(Note: I have taken the liberty to edit the italicised lines above, merely to conform to the King's English.)

Let us learn to hear you

Times of India, June 16 2012



There has been one noteworthy omission from among the list of issues faced by the differently abled that I have been addressing in this blog. I have been dearly wanting to be able to say something halfway meaningful about the travails of the hearing impaired. To date, I had made fairly serious attempts on at least four occasions, in vain, to get such a person to try and formulate some specific observances by `normal people' which would mitigate some common difficulties they face. Maybe because hearing impairment is not overtly visible to people (like a person in a wheel-chair, or a visibility impaired person walking with the white cane), many people including me have very little real conception of the world of one who cannot hear. 


But a few weeks ago, I received a wonderful email where the writer identified herself as a middle-aged woman from Mumbai, who had been faithfully reading my column for quite some time, and explained that she had a hearing impairment. I immediately sat up, thinking `could this be my lead?' So I wrote back to her narrating the failed attempts discussed above, and asked if she would help me get a glimpse of the world from the perspective of one with her constraints. The very next day, I got this remarkably revealing email from her, which I simply reproduce below, verbatim and in toto, if only because it rings so true, and gives the reader a ring-side seat to the problems that people like her face every day:


Thank you so much for your prompt and encouraging mail. I am so happy to know that you would like to touch upon the trials of  hearing impaired folks . It is not at all  insensitive on your part to do so, on the contrary it would be a good platform for sharing.


I do not mind sharing some of the problems I face which a hearing person takes for granted. Starting with my alarm clock in the morning, I do not hear the beep. It is my husband who hears it and wakes me up. However when I travel out of town my wake up call is the vibrator modeof the mobile phone. Simple rituals like the whistle of the pressure cooker and kettle requires my physical presence. For the door bell, additional ringers have been placed and a louder bell has been fixed. The biggest problem that one faces is communicating in a big group, when there is a lot of background noise, and following conversation is very difficult. Social exclusion does take place and one does not feel a sense of belonging; during the course of a conversation very often one misses out on vital information or a joke. When everybody laughs it becomes embarrassing and one is misunderstood to be stupid. Hearing impaired folks communicate visually and they get conversation clues through body language, facial expressions and lip movement. It is therefore important to face a hearing impaired person and communicate slowly rather than raise one's voice. Since one has to concentrate hard all the time  to understand conversation, it leaves one very fatigued and tired.




Learning of languages is  very difficult as one cannot hear the words and pronunciation clearly, I faced this problem whilst learning Hindi in school. However now, exemptions from languages are possible for hearing impaired students. While walking on the road one cannot hear the traffic from behind and this can prove to be fatal to one's life. One can get knocked down by a vehicle. While driving very often one cannot hear the traffic and overtaking of cars, visual driving and constant concentration are the ways of manouvering oneself through the traffic. At the airport the announcements are not clear therefore one is constantly vigilant and watching the monitors for flight updates. Entertainment - while watching  television and movies all is not deciphered. However sometimes subtitles are used and these are a boon for the hearing impaired. Communicating through mobile phones, where in text messaging and the option of the vibrator mode is convenient, emails and the use of skype and video phones are also very convenient for hearing impaired folks.




Parents may sometimes miss detecting hearing impairment in their child and may attribute low grades in school to laziness or inattentiveness. A young deaf and dumb lady was trained to work as a beautician. One of her seniors passed on some instructions which she could not hear and therefore she did not respond. The senior was furious and slapped her hard. The senior  was not aware of her problem, and apologised to her later. This is one of many incidents faced by the hearing impaired folks. 


Thank you Rekha!

Do ATMs have to have steps?

Times of India, June 02, 2012


How is this for a classic Catch-22 situation? My unfortunate friend who was at the receiving end of it obviously cannot see much humour in it! She had had the misfortune of having been affected by Polio as a kid, and has been using such assistive devices as crutches and braces on her legs for most of her life. She continues to gamely try and lead a normal life - having had the fortune of getting married to a good and caring man, and of having found a job in the face of numerous forms of resistance. She goes to work on a three-wheeled scooter - after having mastered the non-trivial mechanics of hobbling on her crutch to her scooter in the parking lot, and getting the scooter moving after having stowed the crutch away, taking care not to fall at any step of the process.

Having to negotiate steps (going down or up) is akin to torture for such people, and steps without any supporting rails on the sides are tanatamount to a blueprint for disaster. To her unalloyed happiness, she discovered that the branch of her bank (Indian Bank) which was near her home had a `drive-in ATM'. She lived happily for a while with this lifeline which elevated at least one necessary periodic chore from yet another painful exercise to a pleasant diversion. Then, `progress and modernisation' struck: her ATM was torn down, and she was told that the Headquarters Office was moving to her branch, which was being accordingly refurbished. She dashed off a distress mail to the HQO asking them what was to become of her freiendly drive-in ATM. To her surprised satisfaction she received a politely worded and prompt response from their IT division head assuring her that the Drive In ATM facility would be restored the minute the new building was ready. Her faith in IT - as well as the human face of commerce - received a nasty blow when the construction was complete, and the old drive-in ATM had been replaced by the unfriendly older model, replete with steps, and the attendant glass swing door was the hair on the camel's back!

Unfortunately, this kind of thoughtless idiocy continues to torment the lives of a large number of people, on a daily - and painful - basis. If you want  a good laugh, you should peruse the trite solecisms mouthed in the `National Policy for Persons with Disabilities' drafted by the
Ministry of Social Justice and Empowerment of the Government of India
(see http://www.disabilityindia.org/nationalpolicyfordisable.cfm). For
instance, the first paragraph announces that:

The Constitution of India ensures equality, freedom, justice and dignity of all individuals and implicitly mandates an inclusive society for all including persons with disabilities. In the recent years, there have been vast and positive changes in the perception of the society towards persons with disabilities. It has been realized that a majority of persons with disabilities can lead a better quality of life if they have equal opportunities and effective access to rehabilitation measures.

`Vast and positive changes in the perception of the society towards persons with disabilities'! Hah! I  would like to see some of these avowed perceptions and realisations (that a majority of persons with disabilities can lead a better quality of life if they have equal opportunities)  manifested, for instance, in an enforced requirement  that at least every fifth branch of each nationalised bank should  host an ATM with a drive-in facility, and a ramp of acceptable slope in all their ATMs!