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!

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'.