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DISABILITY-RESEARCH  May 2018

DISABILITY-RESEARCH May 2018

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Subject:

Re: "Burden"

From:

Lauro Purcil <[log in to unmask]>

Reply-To:

Lauro Purcil <[log in to unmask]>

Date:

Wed, 9 May 2018 19:24:35 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (1 lines)

Well said Dan!
Original message:
> As disability research list members I have no doubt that we all enjoy a debate.

> But can we all agree on taking care of each other a little more?

> Too often, in recent weeks, there have been a number of hard hitting 
> posts that would have benefited from the use of a more considerate 
> tone. Not normative. Not official. Not academic. Just relational and 
> being with one another.

> Disability research is, for me and I am sure many of us, an opportunity 
> to relate with one another about stuff we really care about.

> Let’s keep looking after one another.

> Peace.

> Dan xxx

> Sent from my iPhone
> On 9 May 2018, at 22:26, D.D. Huijg <[log in to unmask] 
> <mailto:[log in to unmask]>> wrote:



> There has been a post earlier about peer reviewing as well and without 
> similar comments.

> I understand the need to discuss reflections with other scholars, but 
> also the ethical points.

> I am wondering what would be an appropriate way to bring a point - as 
> the one raised - into the conversation on a list (which might be 
> publicly available) without crossing ethical lines. Would that be, 
> e.g., by talking in very general terms and not mention the particular 
> paper, or not mention the peer review context?

> I am just reflecting on what triggered the response in this case and 
> not before?


> On Wednesday, 9 May 2018, Ron Amundson <[log in to unmask] 
> <mailto:[log in to unmask]>> wrote:


> I hereby shame Beth for shaming those who shamed Mark for shaming the 
> person who asked the "burden" question.


> Oops. Shame on me.

> Ron


> On 5/9/2018 10:55 AM, Beth Omansky wrote:


> Interesting and ironic that some of you are publicly shaming Mark 
> Sherry because he pointed out an ethics error in a way that you felt 
> was "shaming." You're publicly shaming Mark, multiplied by your 
> agreements with the first person who shamed him. And, you have no idea 
> who is vulnerable and who is not, but are making assumptions instead. 
> How embarrassing for you.
> Beth
> *******************
> Some people feel the rain. Others just get wet.
> Bob Dylan
> *****************
> Beth Omansky, Ph.D.
> Portland, OR
> USA
> [log in to unmask] <mailto:[log in to unmask]>
> -----Original Message-----
> From: Roman, Leslie <[log in to unmask]> <mailto:[log in to unmask]>
> To: DISABILITY-RESEARCH <[log in to unmask]> 
> <mailto:[log in to unmask]>
> Sent: Wed, May 9, 2018 1:16 pm
> Subject: Re: "Burden"


> I agree with Dr. Bush and feel shaming is neither warranted nor useful here.
> Leslie
> From: The Disability-Research Discussion List 
> [mailto:[log in to unmask] 
> <mailto:[log in to unmask]>] On Behalf Of Tanvir Bush
> Sent: Wednesday, May 9, 2018 1:05 PM
> To: [log in to unmask] <mailto:[log in to unmask]>
> Subject: Re: "Burden"
> Hi there Mark,
> I think there may be better ways of allowing someone to know they have 
> made a mistake without shaming them publically? Deborah’s question is 
> not raised in malice but in ignorance of the ethics. She may be new to 
> all this and vulnerable too.
> You have made an important point but ‘shaming’ is not a professional 
> approach here either..
> Tanvir
> Dr Tanvir Bush
> [log in to unmask] <mailto:[log in to unmask]>
> http://tanvirbush.com <http://tanvirbush.com>
> Twitter: @tanvirnaomi
> Facebook: Tanvir Naomi Bush

> On 9 May 2018, at 20:36, 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________________
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> ________________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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> 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] 
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> Archives and tools are located at: 
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> 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 
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> Archives and tools are located at: 
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> --


> Ron Amundson

> Philosophy Department (Emeritus)

> University of Hawaii at Hilo

> Hilo, HI 96720

> ________________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 
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> You can VIEW, POST, JOIN and LEAVE the list by logging in to this web page.

> --

> Best wishes,
> Dyi

> Dieuwertje Dyi Huijg
> [log in to unmask] <mailto:[log in to unmask]>
> http://manchester.academia.edu/DieuwertjeDyiHuijg 
> <http://manchester.academia.edu/DieuwertjeDyiHuijg>

> ________________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: 
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> 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] 
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> Archives and tools are located at: 
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> 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 
 
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