‘The Madhouse’ by Francisco de Goya, painted between 1812 and 1819, in which social alienation is one of the key themes
Trigger Warning: Brief description of graphic violence
The 2001 Erwadi fire incident was commemorated this Thursday, the 6th of August — this year with a webinar hosted by the Schizophrenia Awareness Association (SAA) and attended by over 80 participants representing diverse organisations, nationalities and regions. The chief speakers for the occasion, Dr Bhargavi Davar and Dr Satendra Singh, kept the beacon of remembrance and advocacy burning with their powerful presentations and moving talks.
Mr Abhay Kele and Mr Bakshi of the SAA introduced the webinar with a brief history of the incident that has been bringing the mental health advocacy community in India together every year for the last two decades. On this day 19 years ago a faith-based mental asylum in Erwadi village in Tamil Nadu, India, witnessed the horrific death of 28 residents when a fire gutted its shanty structures and these persons could not escape because they had been chained to trees or their beds. The incident brought national and global attention to inhuman mental health “care” practices like this, which have been and continue to be shockingly common in India and elsewhere. It mobilised stronger advocacy and led to lawmaking that prohibits chaining (although this is still not consistently enforced).
There was a symbolic lamp-lighting to commemorate the tragedy. In her brief yet impassioned talk Bhargavi Davar, founder of the Bapu Trust and tireless advocate of the rights of persons with psychosocial disabilities, threw light on the ironic impact the Erwadi incident had on legislation in India. While chaining became illegal, the government passed an act that mandated that there be a mental health institution in every district across the country. While prior to 2001 there had been only about 40 such closed-door institutions nationwide, now there were several thousand. Paradoxically this kind of intervention effectively withdrew justice from a group of the population that simply got labeled as deviant and further isolated. Now far greater numbers of these persons would be even more easily forgotten behind closed doors.
Dr Davar spoke about her long fight for mental health to be brought under a disability legislation, which would help bring the focus on the rights and life every person with disability needs to have, rather than the debatable and often cruel ‘care and treatment’ model that mental health currently falls under. She pointed to the need to work even harder for the next two decades to liberate people and offer them the dignity, respect and agency to live life on their terms. She shared with the participants heartfelt and moving excerpts from the 2001 issue of the Bapu Trust newsletter Aaina:
“Aaina will again and again remember the many human lives sacrificed and wilfully wasted in Erwadi, and in many places like Erwadi. We’ll not allow ourselves to forget. When we remember Erwadi, we also remember our own agency in excluding people amidst us with the label of ‘mentally ill’. […] Thousands have died, forgotten and alone, on the hard cold floor, unclothed and uncleaned, lice in hair for company, with not a warming touch for years. For Aaina, August 6th is a day of remembrance and of grief.”
She urged for each Erwadi Day to stand for the continuing legacy of resistance to injustice, and to ask how long it would be before we free ourselves and our fellow human beings from these inhuman, oppressive colonial practices.
Dr Davar’s talk was followed by that of Dr Satendra Singh, physiologist, noted disability activist and the first ever Indian to win the prestigious Henry Viscardi Achievement Award for extraordinary leadership in the global disability community. Indian legislation and the disability community owes much to Dr Singh’s determined, empathy-driven fight for equal rights and accessibility for persons in education, employment and in physical public spaces nationwide. While touching upon some of the progress that India has seen in this regard over the years, his presentation continued in the vein of Ms Davar’s words, underlining the exclusion and invisibilisation of disabled persons that remains prevalent, and pointing to the work in advocacy, awareness and governmental change that lies ahead.
Taking a philosophical stance to begin a talk that would go on to draw its power and persuasiveness from a richly compiled series of facts, figures, images and often first-hand experience, he called on us to understand disability as an integral part of life — as just another form of diversity — given that our ‘able-bodied’ existence is not only fragile but very often short-lived. It is a precarious few decades, if we are lucky, he said, in between the natural ‘disability’ of infancy and old age.
This immediately calls into question the deviancy-view of disability and forces us to redefine disability: he emphasised the fact that while individuals may have various impairments, it is their environment that creates disability. This was explained through various examples, such as of blind or crippled persons who may function perfectly given the requisite accessibility infrastructure, but would remain ‘disabled’ when the environment is put together in a way that excludes them.
Dr Singh also framed this in the broader context of the two existing discourses: the social model, which seeks to align the environment to include all persons, and the contrary and unfortunately more dominant medical model, which sees individuals as faulty mechanisms that need to be fixed. This brought him to the theme of design for universal access, which he has been at the forefront in institutionalising in Indian spaces like metro stations, medical colleges and hospitals. He also spoke of his struggle against the archaic discriminatory regulations in spheres like higher education, voting rights, and public services, which have been reluctant and slow to change. As someone living with polio, he has been a survivor of systemic discrimination throughout his life, and brings to his activism this first-hand experience.
Dr Singh showing an example of accommodations some countries are now making, in this case a ‘standing wheelchair’ for a surgeon, for professionals to overcome their impairments.
His talk was punctuated with instances from global history that simultaneously showed inspiring alternatives for universal empowerment, and highlighted how far behind India remains in implementing such initiatives. In one example of how slow and non-linear the progress in human rights often is, he cited the legendary “chain liberation” movement started by Philippe Pinel in the Paris of 1793 that led to the abolishment of the chaining of the allegedly insane in Paris hospitals. He then showed photographs of such chained persons observed 130 years hence, in Badayun, Uttar Pradesh as recently as 2019. These medieval horrors are not restricted to India either — not long ago we carried two articles (2019, 2020) about the inhuman conditions in some mental health institutions in contemporary Indonesia.
Graphics from Dr Singh’s presentation
Helping to call out various current practices and keep our eye on the direction we need to keep moving in, Dr Singh framed his presentation around dichotomies such as ‘paternalism/charity vs autonomy’, ‘disempowerment vs empowerment’, and ‘equality/equity vs liberation’, always reminding us that ‘disability ≠ inability’. All of these are necessarily founded in giving voice and visibility to those with the disabilities themselves, allowing them the agency and identity that society has historically snatched away from them. Dr Singh reminded us of the iconic slogan: “Nothing about us without us.” He brought it all together in one sharp and evocative comment he made: “Don’t make us ‘different’, ‘divine’, ‘divyaang‘ — just give us the basic human rights we deserve.”
Aditya Pandya is a co-editor and illustrator for Mad in Asia Pacific. He writes, draws, dances, and learns languages. Some of his work is at www.adityapandya.in.
