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Thanks Marion Your commentary has raised a hope that the recent posts are a minority of opinion within the group. How much of the ‘language of disability’ in disability research of late has been influenced by the UK government, and the banner headlines of the tabloid press demonising chronically ill and disabled people has influenced recent commentary is unknown, but I would hazard a guess that it has clearly influenced some commenting in this exchange. Adopting the DWP’s method of persuasion by publicly humiliating others is sad to see on this space, to the point where some members have asked to be removed from the group. Laura’s comments below are especially helpful, and it is hoped that others take serious note of her contribution. Mo “Our lives begin to end the day we become silent about the things that matter.” Martin Luther-King Jr Mo Stewart Disability studies researcher Author of ‘Cash Not Care: the planned demolition of the UK welfare state’. New Generation Publishing 2016 https://www.researchgate.net/profile/Mo_Stewart/publications *** The contents of this email are intended for the recipient only and may be confidential. Permission is not given for this information to be published, forwarded or distributed further. *** From: The Disability-Research Discussion List [mailto:[log in to unmask]] On Behalf Of m.hersh Sent: 10 May 2018 00:57 To: [log in to unmask] Subject: Re: "Burden" I agree that we should take care of each other and be polite and respectful when we disagree. However, there are increasing moves to recognise the important work done by reviewers. Many journals are now listing their reviewers and something called Publons is working for more recognition for the work involved in reviewing, giving awards etc. Therefore, I do not consider stating that you are involved in reviewing as problematical. What would be unethical would include publicly commenting on unpublished papers, stating which papers you are reviewing (unless the reviews are being conducted openly) or plagiarising material from them. I think there is a particular issue about language in disability research, as in research about other minority and/or marginalised groups. Much of the language used is very negative, about deficits and disorders. Probably totally unintentionally and without often being aware of it, authors and researchers are putting down disabled people, being derogatory about them and writing in a one that can make any disabled readers feel depressed and reduce their self esteem. I would consider any language model which implied disabled people (or women, or Black people or LGBT+ people etc) were inferior to non-disabled people or was disparaging problematical. However, I would consider this different from imposing a particular model or understanding of disability or language use about it. I would also state that respecting different cultures does not require accepting the marginalisation or belittling of disabled people, any more than it requires accepting practices or language which is belittling of or dangerous to women. A further issue relates to the responsibility of reviewers when a paper is technically sound, but uses negative, belittling or offensive language about disabled people. Clearly the best option is for reviewers and editors to work with the authors to change the language. This then raises the issues of what is appropriate conduct when authors continue to use offensive etc language. I think it is important we continue to be able to seek advice from each other, but in ways that are careful about respecting confidentiality, if appropriate. Debate, including respectful disagreement, is helpful, in moving ideas forward. Marion On 09/05/2018 23:51, Ruchi Palan wrote: Much has already been said about the ethics of the review process so I won't dwell further on it. However, I would reiterate the point made by Kirstein about not assuming and asserting a particular model or language as the only one. As a PhD student, I researched disabled students' experiences in both the global Southern and Northern context. And indeed, to impose the northern understanding and definition of disability to the south would in many ways mean disregarding the social, cultural, economic and, political contexts which shape the experiences of disabled persons and their families in those geographies. I am sure we have all benefited from someone's expertise or suggestion here on this forum. So, seconding Daniel, just like to say, let's continue taking care of one other. Kind regards, Ruchi On Wed, May 9, 2018 at 11:25 PM, Daisy Hill <mailto:[log in to unmask]> <[log in to unmask]> wrote: It saddens me to see this kind of intellectual bullying playing out in a space I have tried to see as a place of dialogue and thoughtful discussion. When a person asks for help this is what we indigenous ppl call an expression of humility and return we teach we respond with the gift of kindness and generosity as we have been offered an opportunity to help another. This list serve is too often a place of rebuke and can be bereft of the wisdom that should come from The elders/ scholars who share wisdom and insight not the unkindness and unprofessionalsm I am seeing of late. Deborah sorry this has been our xommunity’s Response to your question. Laura Arndt Canada ------------------------------ *From:* The Disability-Research Discussion List < [log in to unmask] <mailto:[log in to unmask]> > on behalf of Deborah Chinn < [log in to unmask] <mailto:[log in to unmask]> > *Sent:* May 10, 2018 6:49:20 AM *To:* [log in to unmask] <mailto:[log in to unmask]> *Subject:* Re: "Burden" I did think carefully before posting and did my best refrain from including any information that would identify the authors of the article. On reflection I should have taken more care so I accept Mark’s criticism, though the tone I don’t think is warranted. I do understand that reviewers have to maintain their anonymity and that of the authors of the papers they review and would feel very upset if the authors felt that I was not taking these responsibilities seriously. I was hoping to elicit some advice from the community of disability scholars so that I could contribute a more reflective response to the authors. I don’t think I disrespected their work, though did acknowledge that they came from a different theoretical perspective than me. i was hoping for some guidance on this, but I acknowledge my mistake that I could have been a lot less specific about the circumstances of my query which would then perhaps have received some helpful comments from the community. I will let the editors know that I am withdrawing my offer s to do the review. We all do this work for free and I was hoping to give more thoughtful feedback to the authors, and certainly not to name and shame anyone. It is of course of paramount importance that we maintain standards of academic integrity and confidentiality. On the other hand I hope Mark can acknowledge that we can make errors of judgement and help each other out with doing better in future Deborah On 9 May 2018, at 21:52, Yaw Adjei-Amoako <mailto:[log in to unmask]> <[log in to unmask]> wrote: Hi Mark, I am sure you would agree two wrongs never make a right. I believed your approach is equally disgraceful, disrespectful and unacceptable. We all need to be measured in how we treat others on this platform. Thanks Yaw On Wed, May 9, 2018 at 8:37 PM Mark & Molly Sherry < [log in to unmask] <mailto:[log in to unmask]> > wrote: This is a disgraceful, unethical post. The process of peer-review MUST be anonymous, and MUST be professional - not a poll among hundreds of scholars. For all you know, the person who submitted the paper is on this list. You have violated basic principles of academic integrity, confidentiality, and peer review. Shame on you. Mark Sherry On Wednesday, May 9, 2018, 2:43:15 PM EDT, Deborah Chinn < [log in to unmask] <mailto:[log in to unmask]> > wrote: Dear all 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. Many thanks Deborah Chinn KCL, London ________________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 <http://www.leeds.ac.uk/disability> - studies). Enquiries about list administration should be sent to [log in to unmask] <mailto:[log in to unmask]> Archives and tools are located at: www.jiscmail.ac.uk/lists/ <http://www.jiscmail.ac.uk/lists/> disability-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 <http://www.leeds.ac.uk/disability> - studies). Enquiries about list administration should be sent to [log in to unmask] <mailto:[log in to unmask]> Archives and tools are located at: www.jiscmail.ac.uk/lists/ <http://www.jiscmail.ac.uk/lists/> disability-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 <http://www.leeds.ac.uk/disability> - studies). Enquiries about list administration should be sent to [log in to unmask] <mailto:[log in to unmask]> Archives and tools are located at: www.jiscmail.ac.uk/lists/ <http://www.jiscmail.ac.uk/lists/> disability-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 <http://www.leeds.ac.uk/disability> - studies). Enquiries about list administration should be sent to [log in to unmask] <mailto:[log in to unmask]> Archives and tools are located at: www.jiscmail.ac.uk/lists/ <http://www.jiscmail.ac.uk/lists/> disability-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 <http://www.leeds.ac.uk/disability> - studies). Enquiries about list administration should be sent to [log in to unmask] <mailto:[log in to unmask]> Archives and tools are located at: www.jiscmail.ac.uk/lists/ <http://www.jiscmail.ac.uk/lists/> disability-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 <http://www.leeds.ac.uk/disability-studies> ). Enquiries about list administration should be sent to [log in to unmask] <mailto:[log in to unmask]> Archives and tools are located at: www.jiscmail.ac.uk/lists/disability-research.html <http://www.jiscmail.ac.uk/lists/disability-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 <http://www.leeds.ac.uk/disability-studies> ). 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