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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 ----------------- Dr Lara Bezzina *PhD - Disability & Development (Durham University, UK)* *M.A. Research Methods l M.A. Human Rights & DemocratisationTwitter: @LaraBezzina l Blog: https://larabezzina.wordpress.com <https://larabezzina.wordpress.com> l Skype: aral219 * *LinkedIn: **https://www.linkedin.com/in/larabezzina <https://www.linkedin.com/in/larabezzina>* *Participatory Video: * *https://www.filmsforaction.org/watch/disability-its-not-the-end-of-the-world/* <https://www.filmsforaction.org/watch/disability-its-not-the-end-of-the-world/> On 10 May 2018 at 12:51, Mitzi Waltz <000001ecb1a66107-dmarc- [log in to unmask]> wrote: > First, I agree that it's important that peer review needs to stay > anonymous, so the original post was a bit off the mark. > > But it's a legitimate question, and one that I've been grappling with over > the last year, when I've moved from teaching in a disability > studies-informed environment and into a 'disability and development'/global > health environment. The UN's pervasive use of the 'burden of disease' > concept has now been extended from areas where I'm sure we would all agree > there is indeed a 'burden' (e.g., no one's life is enhanced by contracting > preventable conditions like leprosy or getting a helminth infection because > you are forced to rely on dirty water) and into describing living with > physical differences or the lifelong consequences of contracting a > communicable disease as coping with a 'burden' or being a 'burden' that > costs governments money. > > I feel rather the same about the DALYs (Disability Adjusted Life Years) > concept, which is intrinsically based on the idea that bodily or mental > difference is a 'burden' that ruins/shortens your life. > > And at the same time, I recognise that this loaded language is intended to > provoke a positive response from people who might not otherwise be willing > to give a toss. It's a double-edged sword, however--if a government is > moved to provide services to avoid negative consequences, it hasn't changed > its views at all, really, it's just been put into a corner and has to > response by being seen to do something. > > In the specific example of parents talking about intellectual or > developmental disability, there is a similar but slightly different > dilemma. I've been in their shoes, so I can tell you, there are times when > it can feel 'burdensome' and there is a need to engage with that feeling on > the part of researchers. It requires hard physical and emotional work from > you, the parent, because the state is unreliable and doesn't actually care, > and that work can feel thankless, repetitive and difficult, and therefore > burdensome. How parents conceptualise these facts isn't always going to be > 'politically correct' and we can't require that of them either - although > hopefully our work can provide some help, not in terms of policing > terminology but in terms of shifting attitudes and seeing to it that > parents aren't in a situation where caring doesn't become truly > 'burdensome'... > > Mitzi > ________________End of message________________ > > This Disability-Research Discussion list is managed by the Centre for > Disability Studies at the University of Leeds ( > www.leeds.ac.uk/disability-studies). > > Enquiries about list administration should be sent to > [log in to unmask] > > Archives and tools are located at: www.jiscmail.ac.uk/lists/disab > ility-research.html > > You can VIEW, POST, JOIN and LEAVE the list by logging in to this web page. > ________________End of message________________ This Disability-Research Discussion list is managed by the Centre for Disability Studies at the University of Leeds (www.leeds.ac.uk/disability-studies). Enquiries about list administration should be sent to [log in to unmask] Archives and tools are located at: www.jiscmail.ac.uk/lists/disability-research.html You can VIEW, POST, JOIN and LEAVE the list by logging in to this web page.