A rose by some name(s) can stink

There is something that has really made my blood boil every time I hear it. But I am getting ahead of myself. I should let my temper rise slowly. If my parents have decided to call me by some name, that does not mean somebody I hardly know from Adam can walk up to me and say `from now, you will be called by this other name by which I christen you'. You can only wonder at the possible outcome of walking up to a religious fundamentalist called Ram, say, and telling him he will henceforth be called Mohammed.

If I seem childish and silly, bear with me. I am merely trying to get the reader primed to the same level of justifiable wrath as a group of people who have harmed nobody but are being subjected to callous mockery by the political `leader' of their country. The group of people I am alluding to are my fellow Indians who have the misfortune, like me, of having a disability. Such people have their own culture. For various reasons I do not have to elaborate here, we like to be referred to as `persons with disabilities' (or simply PWD). But our rulers in Delhi have never stopped trying to find a name which they feel more comfortable with: thus `specially abled', `differently abled', and several variants thereof. Why, for God's sake, should you be comfortable with what people call me? Do we not have a say in what we are called?

The biggest culprit in this name-calling is our Prime Minister, Narendra Modi.  One fine day, in one of his rare speeches to the media on PWDs, he came up with the word `Divyang' for disabled, and before you knew what was happening, official statements from Delhi had started using the term `Divyangjan' for PWD, e.g., in the Hindi version of `Ministry for Social Justice and Empowerment'. Though almost all groups of PWD have uniformly voiced their dislike for this term being thrust on them, the Govt. has officially told the UN that in India, PwDs are addressed as ‘Divyangjan’ in Hindi and other Indian languages like Gujarati, Telugu etc. This term is used in the local dialects of the Act and Rules thereunder including in Hindi. ‘Divyangjan’ does not accurately reflect its literal English translation as persons with divine organs. It actually means persons with divine powers. The ‘persons with disabilities’ community at large has welcomed it and is very appreciative of this term attributed to them. Therefore, the word ‘Divyangjan’ cannot be termed as derogatory to persons with disabilities. Nonetheless, the phrase ‘persons with disabilities’ is still in use in English. This selective presumption of parental prerogative to re-name one set of one's children, and in spite of this new name not being well-received by the more outspoken of those who have been re-christened thus, to claim that everybody is happy with their new name, is sheer and unmitigated gall, and only to be expected from a Govt. led by a party with an avowedly exclusive mindset of wanting an India for Hindus only!

What if ...

Last week, Sachin, a young journalist from Business Standard, contacted Disability Rights Alliance (DRA) to talk to a preferably Person with Disability (PWD) member on how the big hype in the press, over the recent elections being rendered disabled friendly, measured up against the ground reality. Going by Business Standard’s desire to seek their opinion, the advocacy of the rights of PWD by DRA is apparently credible. And I am understandably proud to be a member of DRA, in fact the member who was deputed to talk to Sachin. I enjoyed describing many of the glaring lapses that exposed wilful deceit or inaccuracy in the media’s hype on current levels of disabled-friendliness; classic examples may be found in
https://mumbaimirror.indiatimes.com/mumbai/cover-story/spot-checking-mumbais-disability-friendliness/articleshow/69152762.cms  or in Fifth of polling stations not friendly to disabled, Mumbai TOI April 29 2019 (the lack of disabled-friendliness alluding usually to the booths being on the first or second floors of buildings without elevators)! The make-shift ramps at booths in Chennai visited by members of DRA were so steep that independent use by wheelchair users was quite dangerous and scary. As for availability of disabled-friendly toilets, we are talking about India! (For the ultimate oxymoron, see my blogpost on an upmarket hospital in Chennai without ANY disabled-friendly toilet at https://differentstrokes-vss.blogspot.com/2019/03/my-recurring-nightmare-but-in-real-time.html. After talking to me, on my experience of voting in Chennai last month he wrote a piece (in Business Standard) on how one wheel-chair using mathematician (me) viewed the ground reality of going to vote this year in Chennai. (This had been possible only due to the resourcefulness of my driver!)

More interestingly, as I found out only later, Sachin was asking the pertinent question, of whether making the entire election process more accessible to PWD and thereby more inclusive, might affect the outcome of the election. The simple arithmetic he proposed was to compare typical margins between winning and losing in our elections, with the proportion of the electorate who were PWD and would be able to cast their vote if the electoral process were to be truly barrier-free and accessible. For instance, the typical difference between winning and losing in our elections is about 15%, while about 20% of voters who are PWD will benefit from the entire election process being made barrier-free. I would say this to Sachin: IF every PWD (in fact any person with some sensitivity) were to see a video of PM Modi making `jokes’ of very dubious taste about people afflicted with dyslexia that was (a) on social media a few weeks back, (b) and deleted rather quickly after many people commented on how shameful and in poor taste it was for the PM of `the biggest democracy’ to mock her citizens who were dyslexic, (c) but thankfully not deleted before it was preserved on Twitter (see @RoshanKrRoy) making it possible for anyone who so desired to reload and see the video; THEN it is almost sure that (s)he would decide to vote for anybody but Modi, thereby giving more credibility to Sachin’s conjecture.

My recurring nightmare - but in real time

Let me show you one of the typical  contradictions that India keeps coming up with, at an astonishing rate. On the one hand, Chennai nee Madras prides itself on being the capital of medical tourism. And one of its more elite hospitals is Malar hospital on the bank of Adyar River. As my luck would have it, my wife has had to be hurriedly admitted at the emergency ward, the reason for our returning again, and again, and again, ad nauseum, to Malar, being that the doctors that she has had to consult have had affiliations with that hospital. Now for my gripes against Malar Hospital, let me slowly lead up to the prime contradiction in this hospital. I must tell you that I use a battery powered wheelchair in the naive hope that this will make me independent. Almost every door in this hospital comes equipped with one of those self-locking devices, which you should know is one of the prime reasons for rendering any building highly barrier-ridden  and disabled-unfriendly. So my always low threshold for difficult environs was already simmering and ready to erupt as my search for a disabled-friendly toilet continued. The first two toilets I was led to were disqualified from fitting the requirements of being disabled-friendly because of a step at the entrance and of having stalls too small for manoeuvring a wheel-chair. At the sight of my face being dangerously close to apoplectic, the nurse, who had suggested those two toilets said the toilets of the desired sort were to be found on some other floor and quickly took herself far from the elevator! And when I got to the mentioned floor, I found that the toilets there were also rendered unfriendly by the ever-present step at the entrance to the toilet.A little more enquiry led to the amazing fact (at least as far as anybody there could tell) that Malar hospital does not have a single disabled-friendly toilet! I wonder if any of those medical tourism booklets mention this amazing fact.

Still simmering and seething from the amazing gall of the above fact, I felt that nothing could amaze me any more about this hospital. But Malar was always ready with yet another no-brainer for you to chew on! Whenever a patient is admitted to this hospital (or to several others of its ilk), she has to have an attendant (who will have to make periodic visits to the pharmacy to keep replenishing the stock of pills that have been consumed since the last such visit to the local pharmacy, or pay some bills in one of the administrative offices which are woefully ill-equipped to accommodate a wheelchair user in their narrow corridors). But those corridors are luxuriously spacious in comparison with the bedroom the patient has to share with the attendant. The pokey little space reserved for the attendant can only be reached after making a couple of tight 90 degree turns around the hospital bed after carefully bypassing all the gizmos attached to the bed. As for turning the wheel chair around so you can get back out of the room, the paucity of space around the bed makes that impossible unless you have a brawny person in the room who can manually  accomplish this. And you should have the presence of mind to stop every hospital hand visiting the patient from automatically clicking on the locking device on her way out. And if you wanted to call some nurse from their waiting room, that door - just like every other door from the patient's room to the nurses' lounge - will also have this gizmo trying to prevent you from pulling it open! I have a long list of no-no's for a potential access audit of this hospital. It has an enormously long list of goofs to be rectified before it can claim to be accessible. When I was sweetly asked for my comments about our experience at Malar, I said I had a whole essay to contribute on the topic, which I intended to publicise in my blog one day! This is that day; and every dog has its day!