Thursday, 15 January 2015

Keep running to stay in the same place

I was struck by the quite amazing similarity between different aspects of my life since I was diagnosed with multiple sclerosis a dozen years ago. Thus, consider the following list, and the parallels between them that I wish to illustrate:

(a) the actual onset of the disease and my ongoing attempts ever since, to cope with it;
(b) the sensitivity of people/organisations towards people with disabilities and the attempts of a group of people whom I have joined in continually ongoing efforts to make a dent in centuries of indifference;
(c) the insensitivity and power-mongering among `leaders of the disability sector'  and their (non-) reactions to attempts at raising levels of inclusivity;
(d) the lethargy of government officials allegedly in charge of `social justice and empowerment',  their reactions to attempts at raising levels of inclusivity, and their total lack of comprehension of what they are supposed to be doing.

And now for the `parallels':

(a) The ability levels of my limbs, particularly the left leg and left hand, have been steadily declining (although I am happy to note that the rate of detioration is not as rapid as it might have been). I have been undergoing physiotherapy for about an hour, thrice a week, for the last 12 years, and trying to save the other days of the week as allowance for flagging energy levels and feeling fatigued almost all the time. And it is as if I never did anything: there is NO improvement in my condition. The lesson seems to be: I must do all those things to at least maintain the status quo, unpleasant as it may be.

(b) There is total lack of sensitivity or awareness of the general public as far as the need for an inclusive and barrier-free environment which could facilitate independent living of people who might be elderly or have some manner of disability. The hurry to take care of one's own needs always eclipses the rights of the fellow-man. Thus, one always sees people parking their cars or motor-cycles in a manner which is bound to inconvenience others. So much so that the City Corporation of Chennai has taken it upon itself to provide wider footpaths with cut-aways which will enable a wheel-chair user, for instance, to (a) use the pavement, and (b) get off from the pavement and down to the road, and vice versa. A group of my friends, calling themselvs the Disability Rights Alliance (DRA), has been roped in by the Corporation to do `audits' of the pavements where they have been working. Several week-ends, we have gone with groups of volunteers, with our wheelchairs and crutches and white canes(*), distributing pamphlets to residences and retail outlets, asking them to ask their visitors/clients to not use these ramps to get their cars or motor-cycles onto the pavements and park them right across the pavements. Every week-end, it is the same scene and same story: people say `first you ask all the others to remove their vehicles; then I'll remove mine' or `I'm parking it for just two minutes; then I'll take it away'. It is as if the past week-ends' exercises had not taken place at all!

((*) In order to counter the oft-repeated and ridiculous questions such as `but how many wheel-chair users do you see?', we have to show we exist - not that it does a fat lot of good!)

(c) I have been crying myself hoarse in this blog about attempts to `pass the RPWD Bill of 2014'. The point is that there are no laws `with teeth' concerning rights of PWD in India, in spite of our having been one of the first signatories of the UNCRPD, and an attempt was made, after secret negotiations between the `leaders' of some Disability Rights Groups in Delhi and the leaders of the Congress party in the dying days of its last tenure of power in Delhi, to hurriedly push through some legislation on a horribly mangled Indianised adaption of the UNCRPD. Fortunately these secret and self-serving dealings were discovered just in time and a big hue-and-cry was made by many right thinking Disability Groups to have this almost-born Bill handed over to a Standing Committee for review after the elections were over and the new Government took over. Not long ago, we heard that this Standing Committee was seeking submissions from interested parties regarding this bill. You can be sure the DRA and many of its members sent in such submissions, with pleas that they be allowed to make personal submissions before the Committee took any decisions. About a month ago, we heard that the Standing Committee was going to conduct its hearings, and heard two days later that these hearings had taken place; upon inquiry one finds out that the people invited to present their views were the same `leaders' from Delhi who had failed in their first attempt to push through their butchered version of the UNCRPD, and only something like two of 15 people invited for those hearings were from outside Delhi! After DRA again made some noises on sicial media, etc., we were told that the Standing Committee would be `touring around India' soliciting views of interested parties from other cities such as Chennai. And the latest news is that the Standing Committee will conduct a meeting in Chennai on Jan 29th, possibly also visit Bangalore (according to information apparently from Javed Abidi, one of the `leaders' in Delhi earlier alluded to, who always seems to be privy to such information) and have a `round table meeting' in Delhi on Jan 31st to finalise the findings. This ridiculous lip service to democratic functioning, and tendency to finally letting only Javed and his henchmen in Delhi decide the running of all matters pertaining to PWD, is further proof of the utter irrelevance of well-meaning efforts of other Groups like DRA fighting for Disability Rights.

(d) One reads reports in the newspapers with sickening regularity of the indignities that airlines subject PWD to - from deplaning a passenger with cerebral palsy who had already completed boarding formalities only because the pilot took one look at her and decided that she was a threat to the security of `his passengers', to Air India misplacing the wheelchair that had been checked in by a paraplegic, and not make alternative arrangements for her until some 55 hours after having deposited the poor passenger on foreign soil and letting her try and come up with make-shift solutions and manging on her own without her wheelchair. The DGCA has done precious little to improve the plight of PWD in Civil Aviation. The Ministry of `Social Justice' demands the several million PWD of the land to get a certificate to prove their disability in order to avail of such minimal concessions as they may be entitled to - the only problem is that these certificates can only be obtained in specific government offices which are all notoriously inaccessible - for example, in a third floor office in a building without elevators. Precious little has been done to even utilise such funds as they have been allotted to enforce the laws of the land in making public spaces and facilities accessible and barrier-free.

Bottom line: despite your most well-meaning efforts, you are dealt placebos with great fanfare, while the disease corrodes the innards.

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