Deaf history and the art of writing novels

By Frances Itani & Pieter Verstraete

One of the main goals of the Public Disability History Blog is to bring disability history to the public. Although it is of course true that a lot of academic research doesn’t get translated into accessible language, to say that the public isn’t exposed to disability history is just a bridge too far. Indeed, there are numerous examples to be quoted of non-academics who are interested in the history of disability and/or are exposed to it. Often people will not consciously pay attention to the presence of persons with disabilities in the stories they read, tell themselves or watch. But there are definitely also examples to be mentioned where disability is willingly interwoven in the narrative that was invented by someone and made public through the publication in book-format, the broadcasting of a television show, the curating of an exhibition or just through some chit-chat in a local bar.

During the previous Summer break I coincidentally came across one example of disability-history-already-being-public, the novel Deafening written by Canadian author Frances Itani. The scene of the book is that of the first decades of the Twentieth century. Itani tells the story of Grania O’Neill who became deaf due to the consequences of scarlet fever, went to the Ontario school for the Deaf and married Jim – who is mobilized during the war as a stretcher barrier. I was impressed by the detailed accounts of the school experiences and the lived-through descriptions of Grania’s emotional responses to the things she encountered during her rich life. And so I decided to contact the author in order to know a bit more about how the book came about, what kind of research she did, what the author wanted to achieve with the book and how the (Canadian) Deaf people responded.

Pieter: Where did the idea for the book Deafening originate?

Frances: I started research for this book about 1996, while finishing another book, Leaning, Leaning Over Water. I was driving through Belleville, Ontario at the time and as I was passing the grounds of Sir James Whitney School for the Deaf (previously known as the Ontario School for the Deaf), I decided to pull in to the grounds of that very old school and present myself at the reception desk. After I explained that my late Deaf grandmother had attended the same school at the turn of the last century (I did not know the exact years, at the time), I was offered a tour of the grounds and various buildings. During that initial tour, I knew I was going to write a book with that setting. I didn't know, at the time, what sort of book it would be, but I knew that I would be back for more research. That was the beginning of a six-year journey: researching and writing Deafening.

Front cover of one of the many editions of the book Deafening


Unleashing Public Disability History

By Daniel Blackie

Imagine this: you’ve helped organise a wonderful workshop on disability history at a local community centre. Everything is going great. There’s a throng of people – mums, dads, children, grandparents – and they are really enthused and curious about the hidden history of disability.

The human interest element of the workshop – let’s say the colourful life story of a long forgotten one-legged former miner – has had the desired effect. Folks are intrigued, so intrigued, in fact, they’re asking for tips about where they can find out more about this person’s life. You tell them you got the story from a digitised historic newspaper you read online at the British Newspaper Archive site.

‘Oh, that’s brilliant – you mean we don’t have to travel hundreds of kilometres to the British Library to read it’?

‘No, but you do have to pay a subscription to use the service: twenty pounds to read forty pages’.

Mum then turns to her two young children and says: ‘How about it, kids? We were going to go to the new Lego Movie tomorrow, but I could use that money to get a subscription and we could read old newspapers instead’.

Suddenly the kids don’t look so enthusiastic anymore. And there, in that moment, you realise that the prospect of this family investigating disability history together has just died.

But it doesn’t have to be that way. Excellent free online resources that support public disability history do exist. Disability historians just have to make sure they use them in their public engagement work. For example, the National Library of Wales’ ‘Welsh Newspapers Online’ (WNO) is a brilliant platform, and one that could definitely help avoid a spine-chilling Lego Movie moment. It actually includes many of the same titles the subscription-charging British Newspaper Archive holds.


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.


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.