I have been invited to participate in the Disability Equity in Research Expert Meeting - and attended tonight from 11pm - 1am. The invitation came from Kaloyan KAMENOV from the World Health Organization. Here is a summary from the briefing notes:
World Health Organization and Johns Hopkins Disability Health Research Center Guidance Checklists for Disability Equity in Research Persons with disabilities and disability health equity more broadly are often overlooked in research design, study implementation and scientific reporting, as well as in general science communication. This oversight limits the generalizability of research findings and their applicability to clinical practice.
The Disability Equity in Research guidance checklists are primarily designed to:
- support editors to integrate assessment of disability equity in all manuscripts as an integral part of the editorial process;
- guide authors in preparing their manuscripts and enhance disability equity in all stages of research -planning, recruitment, data collection, data analysis, and dissemination;
- facilitate disability equity inclusion in Institutional Review Boards/Ethic Boards procedures; and
- guide research funders to facilitate inclusion of persons with disabilities in research.
These checklists are informed by a scoping review of 120 documents conducted by the Johns Hopkins Disability Health Research Center and the Disability Programme at the World Health Organization.
I have experience in including people with disabilities as authors during my role as editor of International Journal of Speech-Language Pathology. An example of the inclusion of the unaltered “voice” of a person with disability is found in the following article.
Murphy, D., Lyons, R., Carroll, C., Caulfield, M., & De Paor, G. (2018). Communication as a human right: Citizenship, politics and the role of the speech-language pathologist. International Journal of Speech-Language Pathology, 20(1), 16–20. https://doi.org/10.1080/17549507.2018.1404129
Declan Murphy is a 29-year-old with Down Syndrome. He was invited to co-author the following article. As editor, I facilitated the invitation, writing, and publication so that his words remained and were not copyedited/changed. This required many steps to ensure his “voice” was unaltered (including sending the final text to the journal with Declan’s words in a different colour – and notes to the copyeditors not to alter the text).
“ABSTRACT …The purpose of this paper is to elucidate communication as a human right in the life of a young man called Declan who has Down syndrome. This commentary paper is co-written by Declan, his sister who is a speech-language pathologist (SLP) with an advocacy role, his SLP, and academics. Declan discusses, in his own words, what makes communication hard, what helps communication, his experiences of speech-language pathology, and what he knows about human rights. He also discusses his passion for politics, his right to be an active citizen and participate in the political process…”The Appendix, on page 20 included the writing and editing contract:Appendix
Writing and editing contract with Declan
Declan was asked to write about his experiences under the following headings: what makes communication hard, what helps communication, his experiences of SLP, and what he knows about human rights. A writing and editing contract was drawn up in advance of writing the paper. The contract was, in Declan’s own words, was “these are Declan’s ideas and words; it is Gráinne’s role to support Declan to organise his writing and his ideas; it is ok for Gráinne to correct spellings; it is not ok for Gráinne to change sentences; it is ok for Gráinne to remind Declan of the topic and Declan will make the final decision about what is in this article.” (Murphy et al., 2018, p. 20)
https://www.tandfonline.com/doi/full/10.1080/17549507.2018.1404129
Here is a little more from Declan - I was the person who recommended he be invited to open the IALP conference: “I was like a politician myself one time. I did the opening at the IALP [International Association of Logopedics and Phoniatrics] conference because the Minister for Health was busy. This was huge. My family came to see me. I think they were in shock about my speech and what I said. I have this memory now for all my life because I got a standing ovation. Rena said to me ‘‘how are you so confident up there Declan?’’ I told her and I particularly love this bit that I think about Barack Obama making a speech and then I am not nervous and I just want to do it. “(Murphy et al., 2018, p. 17-18) https://speakingmylanguages.blogspot.com/2016/08/30th-world-congress-of-international.htm
