A lightness of spirit

A tribute to my Friend Rahul Cherain. Thanks Rahul. 

Disability activist Rahul Cherian leaves a legacy of thinking about human rights as rights for the maximum enjoyment of life

The word spirit travels to us via Latin where spiritus literally means breath but is more accurately a description of the vigour and vitality of a being. It is therefore appropriate that while breath marks the line between life and death, an infectious spirit vitalises everyone with their being regardless of the presence or absence of their breath. Rahul Cherian — intrepid spirit and tireless activist for disability rights — passed away on February 7 after a sudden illness.

While many of us feel cheated by the death of someone so young, let us not be mistaken: it was always Rahul who cheated death all along, and Robin Hood-like, generously distributed his infectious enthusiasm, laughing his way out of the bank of life. Diagnosed at a very early age with a spinal tumour, hospitals and surgeries were no strangers to him; they were mere playmates from whom he learnt the value of not taking illness too seriously.

Impact on Verma report

After a surgery in his 30s in which he lost partial mobility of his legs, Rahul became involved with the rights of disabled people and started “Inclusive Planet,” an organisation that works on all aspects of disability rights — from accessibility policies of the government, to reform in copyright law to enable persons with visual disabilities the right to read. He was instrumental in the drafting of the Treaty for the Visually Impaired, currently being debated at the World Intellectual Property Organization (WIPO), as well as the amendment to the Indian Copyright Act to enable exceptions for persons with disabilities.

Most recently, “Inclusive Planet” made a set of submissions to the Justice J.S. Verma Committee on the reform of sexual assault laws from the perspective of disabled victims, many of which were incorporated into the final report.

In articulating an innovative jurisprudence of disability rights, it was clear that his sense of play and a belief that emancipation comes from a sense of joy, not of sorrow, always informed whatever he did. Thus even as he fought in all fora for equal citizenship of disabled people, he also included a dating service for them and a section on disability and humour on “inclusiveplanet.com”. A telling sign of his joie de vivre was an “Inclusive Planet” T-shirt that had an alien with crutches pointing at you saying, “You are not alone.”

I remember being in a meeting with him and various representatives of organisations fighting for the rights of the visually impaired to discuss with the government the Copyright Amendment Bill. As the negotiations seemed to head towards a frustrating bureaucratic wall, he turned to me in exasperation and said, “Things better start improving or I will be forced to hit someone with my crutches and that will be terrible for the image of the disability movement.”

In an interview in Geneva, Rahul enthusiastically demonstrated his new foldable scooter with which he said he could “go on his own and buy his wife Anjana a present.” He added: “I used to call myself a disability activist but now I consider myself a freedom fighter because I am actually fighting for freedom to access the city. Coming from the land of Mahatma Gandhi, I am proud to say I am a freedom fighter and let’s see what kind of freedom we can win for disabled people.”

Rahul leaves behind an important legacy in terms of his work, but a far more important one on how we understand the very idea of a free spirit. His singularity, while irreplaceable, provides us with a vocabulary of thinking of human rights struggles as really a right to the maximum enjoyment of life and doing it with a sense of lightness.

Enumerating lightness as one of the desirable attitudes to cultivate, Italian writer Italo Calvino urged us to recall Perseus’s refusal of Medusa’s stone-heavy stare. To slay Medusa without himself being turned to stone, Perseus supports himself on the lightest of things — the winds and the clouds — and “fixes his gaze upon what can be revealed only by indirect vision — an image caught in a mirror.” Calvino reminds us that Perseus’s strength lay in his refusal to look directly, but not in a refusal of the reality in which he is fated to live. Sleep well Rahul — you have taught us well that laughter and lightness are our greatest weapons against adversity.