This year at the Oscars, the film The Diving Bell and the Butterfly won a major award. It tells the story of a man who died over 10 years ago. J M Bauby the editor-in-chief of the French Elle had a stroke in December 1995 that paralysed him completely. Just the single muscle of the left eyelid moved. Apparently the world inside was intact. With the code of blinks geared to an alphabet used in cases of ‘Locked in syndrome,’ Bauby ‘wrote’ The Diving Bell and the Butterfly — alacrity of his mind (the butterfly) trapped inside the static cocoon of his body (the diving bell) — a 137-page memoir of sudden and terrifying confinement that is funny and moving which straightaway went to the top of the bestseller list in France. Bauby died three days after the publication of the book. He had died a super achiever.
When President of the US, Clinton unveiled the 48-million-dollar memorial — the fourth to a past President on the Potomac, Washington — it was a spectacular monument to Franklin Delano Roosevelt. FDR, whom Clinton called ‘the greatest President of the great American century’ was a victim of polio, confined to a wheel chair. He brought the might of the USA into the War which defeated Nazism and together with Churchill and Stalin laid the foundation of the new order symbolised by the UN. The memorial which is in a 800-foot-long outdoor museum shows him seated — not in a wheel chair. The National Organization on Disability raised a huge controversy forcing Clinton to announce at the opening ceremony that an additional statue of his great predecessor will be added sometime in the future; in a wheel chair.
David Blunkett was blind from birth and had earned his place in the 22-member Cabinet of Tony Blair from among the unprecedented 419 members elected to the House of Commons in the UK. He moved into his office in the Whitehall with Lucy, his guide dog — the first-ever visually impaired incumbent in the Cabinet in the long history of the oldest democracy of the world.
We have a minister in the Central Cabinet in our country. For 40 years Jaipal Reddy, a polio victim in crutches since childhood, has been a parliamentarian, subject, given the kind of members that we have to being addressed as langda.
The guide dog of Blunkett, the wheel chair of FDR and the crutches of Jaipal Reddy are not props — they are a statement. They are super achievers leaving many ‘well endowed’ among us far behind. They don’t want pity, they just need ‘space’ so they can exercise their faculties and do it on their own. Now what makes them super achievers is that all three are termed ‘handicapped’ — a term that attempts to divide people into two categories ‘able bodied’ and ‘handicapped’ — much like ‘first-class’ and ‘second-class’citizens!
After years and years of debate the Parliament wrote into law in January 1996 ‘The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act’. It reads like the Ten Commandments to be implemented by a ridiculously rigid two-tier system at the Center and state levels overloaded with bureaucrats with minuscule representation for the disabled and that with a reservation for the scheduled caste disabled! One such commandment is wheel chair access to all government transport which like all other provisions is subject to the asinine omnibus clause that the implementation is subject to economic resources of the State.
Typically nothing has been implemented. There is also a basic lack of trust in voluntary organisations. No effort to reach people will succeed unless there is ‘heart’ in the approach — which many excellent NGOs in India succeed in. A formal governmental agency will only spawn corruption and nepotism — both of which are a heinous crime when dealing with the disabled.
Over the years the NGOs have done much relying on charity and persuasion — but their major bugbear is the mindset of people at large. The action to change the mindset must come from individuals in all walks of life and not governments.
In this I am afraid the biggest offender is the Indian film industry. Typically a villain limps and/or has a disfigured face, a comedian invariably is either deaf or stammers or both. Every beggar fakes blindness. Indian film as everyone is aware is full of clichés.
After a 40-year association with the film industry I can only hang my head in shame over our contribution to the mindset of people towards disabilities despite occasional flashes like Koshish, Sparsh, Anjali and more recently Tapan Sinha’s Wheel Chair.
Is the achievement of J M Bauby in writing an entire book with the help of his left eye lid, a miracle? Claude Mendibil, a 40-year-old French freelance book editor who helped him write the book tells his story. Forty- four-year-old Jean-Dominique Bauby was a charmer, a flirt, a wit and father of two young children. On December 8, 1995, he suffered a cerebrovascular seizure that pitched him into a three-week coma.
It took Bauby more than 200,000 blinks to complete his book. The resulting book of extraordinary lyricism sold out its print run of 25,000 copies in one day. Then three days after its publication in March 1997 Bauby died. Had he died achieving a miracle? Yes, but that does not surprise me. Working with mentally retarded children in Jarna, Sweden, in an Anthroposophical Center back in the 50s I have seen many such albeit minor miracles. Applying the astounding theories of Rudolf Steiner I have seen the “liberating power of the spiritual vision” make a child reach out to the outer world.
If you want to get a measure of their achievement, just sit back and close your eyes, — the only disability a normal person can ‘experience’ — and thus begin to realise who really are the ‘First Class’ citizens.
