JISCMail - DISABILITY-RESEARCH Archives

Back in the day when Theses were still manually typed, and before the internet was a thing, disability activist Nasa Begum (who unfortunately is no longer with us) researched her Thesis at Warwick University, and called it the “The Burden of gratitude, women with disabilities receiving personal care” It is a well worth a read.

My mum was one of the women she interviewed. She also took a piece out of the doorway in Nasa’s room with her electric wheelchair. She had attitude so you can see where I got it from.

I think you will actually find a lot of early writings in what has now become disability studies don’t get the language right, it was still a bit liquid then, and in transition.

FWIW though as a journal editor, I do think it is ok to ask people to rewrite an article to conform to a house style, and the negotiation of that can be informative all round.

Larry

From: The Disability-Research Discussion List [mailto:[log in to unmask]] On Behalf Of Lara Bezzina
Sent: 11 May 2018 06:45
To: [log in to unmask]
Subject: Re: burden

In my research with people with disabilities in Burkina Faso, I have often encountered the term 'burden'. This was reiterated by people with disabilities themselves when describing how they are perceived by society, that is, as a burden (mostly economically, but also care-wise ). This perception is so strong that some feel that they have to prove themselves as otherwise, and in fact, through a participatory video I facilitated, a group of disabled people talked about this and about the struggles they go through, in their own words, to "overcome their disability". As Deborah points out, these terms are seen as problematic in many studies, however, these are the terms that the participants themselves used in describing their lived experiences.

Lara

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Dr Lara Bezzina

PhD - Disability & Development (Durham University, UK)

M.A. Research Methods l M.A. Human Rights & Democratisation
Twitter: @LaraBezzina l Blog: https://larabezzina.wordpress.com l Skype: aral219

LinkedIn: https://www.linkedin.com/in/larabezzina

Participatory Video: https://www.filmsforaction.org/watch/disability-its-not-the-end-of-the-world/

This Disability-Research Discussion list is managed by the Centre for Disability Studies at the University of Leeds (www.leeds.ac.uk/disability-studies).