10/16/2017

Apasmaaram and the Academic Pursuit of Disabled Pasts

By Aparna Nair

As Douglas Baynton pointed out, once you begin to ‘see’ disability, it is everywhere.1 I never had to look too far. I do not possess particularlly lucid memories of my childhood. What I do remember is my childhood was punctuated and subsequently disjointed by the ebb and flow of epilepsy (‘apasmaaram’ in my language, Malayalam); as is often typical for the ‘unhealthily disabled’.2 At the age of 11, I had my first, dramatic seizure. I don't recall much about the event, just brief flashes of pain, panic and confusion. Over the next seven years, I only had ten or so seizures and my epilepsy eventually responded to a cocktail of medications. While cushioned from the economic stresses of living with a chronic illness in India by the protections and privileges afforded to an ‘upper-caste’, middle-class family, epilepsy nonetheless proved to be quite cataclysmic.
I remember people kept telling me I should have been grateful; grateful that I was only occasionally sick, grateful that ‘it’ could be treated. But I spent most of my adolescence terrified of the silent beast that seemed to sleep in my brain. A beast that was woken from its fitful slumber when I was tired, anxious, hungry or sleep-deprived.

Source: Wellcome Trust, A kuttar or line of blind beggars in Kabul, 19th century
Source: Wellcome Trust, A kuttar or line of blind beggars in Kabul, 19th century
Epilepsy had also marked me as irrevocably different. For me, and indeed for my family, epilepsy had been neither an ‘appropriate difference’ nor, as Friedner recently argued, perceived as ‘non-threatening, ‘feel-good’ diversity in India.3 Epilepsy had marked and fixed me as the ‘sick girl’ through my adolescence, one whose corporeal non-normativity was clear, but little understood and often conflated with mental illness. As a result, I spent many decades struggling to conceal my epilepsy, driven  by a powerful desire for social normativity. Yet my identity and selfhood were irrevocably shaped by epilepsy.

10/09/2017

A warm hug in the cold: The statue of Bo Östlin

By Matilda Svensson Chowdhury

”He was different, but dauntless”

In the pedestrian zone in the cold Swedish town Hudiksvall, located at the coast to the Gulf of Bothnia and at the same latitude as Anchorage, Alaska, there is a heated bronze statue. The snow that falls on it melts instantly. It also generates a different warmth, of the mental kind that makes people stop and think.

The statue shows a man, an ordinary man in plain clothes, laced-up shoes, trousers, a shirt buttoned all the way up and a simple jacket with a zipper. He clasps his hands together in front of his body. On his head a hat with a New York Yankees logo. The man’s face looks relaxed, he faces the spectator curiously but a bit shyly, meeting everyone’s eyes with a hesitant smile.

This is not a statue of an emperor, a God or a Founding Father of a country. Neither is it a statue of an anonymous nobody. In the midst of its plainness, this is a statue unique in its kind; it is (probably) the world's first public statue that is showing a person born with an intellectual disability.

A bronze statue of a small man, smiling and standing with his hands folded, surrounded by dirty snow. Photographer: Björn Lans/Balansfoto
A bronze statue of a small man, smiling and standing with his hands folded, surrounded by dirty snow.
Photographer: Björn Lans/Balansfoto

The man is Bo Östlin, known to the people around him as Bosse. He was born in 1952, in a time characterized by the institutionalization of persons with disabilities. Instead of becoming one of the many children growing up without the possibility of autonomy and lacking daily family life, Bo was allowed to grow up in a regular home with his parents and brother. It has been stressed that this might be one of the reasons behind his pleasant personality.