A plea to the community for advice...
From time to time I review papers submitted to the Journal of Applied Research in Intellectual Disabilities (JARID). It is one of the few journals that focuses on intellectual disability research and has a wide range of papers from the very medical model to more critical, qualitative and discourse analytic. The Editor in Chief is Chris Hatton who is a great - his blog on institutional disablism in health services is terrific. I’ve had my own work published in this journal and have received very helpful feedback from reviewers.
The paper I’ve been asked to review is about the experiences of parents of children with intellectual disabilities. The authors are not from the UK, so perhaps some leeway regarding their use of terminology is allowed. However, they make free use of the term ‘burden’ in describing the impact of having a child with intellectual disabilities - social burden, economic burden, emotional burden etc.
My initial response was to equate use of the term ‘burden’ with a ‘personal tragedy’ disability discourse and recommend that the authors take this term out. What do others feel? I could point the authors towards literature that looks more critically at the very pervasive understanding of disability as misfortune, though the authors are currently a million miles away from a more social model understanding. I could ask them to reflect on the negative implications of using the term and to include some discussion on how the experience of ‘burden’ is because of social barriers to inclusion for disabled children and their parents, rather than the children’s own profiles of capabilities and difficulties.
Are there any published reflections on the term that people know of? Have any organisations for disabled people disseminated advice on avoiding this term?
The paper itself is thorough and on its own terms is methodologically sound. Any ideas about how I might initiate a helpful dialogue with the authors coming from a very different ontological and epistemological starting point to my own?
I’d be really interested to hear your ideas on this.
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