Reflections of a community-based participatory researcher from the intersection of disability advocacy, engineering, and the academy

Action Research

Volumn 15, Issue 3, 2017, Pages 258-275

  Raymaker, Dora M ^a  

^a PORTLAND STATE UNIVERSITY   (United States)

Author keywords

autism; Autoethnography; community based participatory research; critical systems thinking; insider researcher; intersectionality

Indexed keywords

EID: 85029522422     PISSN: 14767503     EISSN: 17412617     Source Type: Journal    
DOI: 10.1177/1476750316636669     Document Type: Article

References (49)

1. AASPIRE. (2014). AASPIRE Healthcare Toolkit. Retrieved from http://autismandhealth.org
2. Adam A., Kreps D., (2009) Disability and discourses of web accessiblity. Information, Communication & Society 12(7): 1041–1058. doi:10.1080/13691180802552940.
3. American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders, fifth edition (DSM-5), Washington, DC: American Psychiatric Association.
4. Anonymous (2010) 2010 Autism research program: Peer review panel summary statement.
5. Arendt H., (1973) Men in dark times, New York: Penguin.
6. Baggs, A. (2005). The meaning of self-advocacy. Retrieved from http://archive.autistics.org/library/self-advocacy.html
7. BBC News. (2009). People with autism ‘have problem with self-awareness’. Retrieved from http://news.bbc.co.uk/2/hi/health/8407857.stm
8. Brajnik G., Yesilada Y., Harper S., (2011) The expertise effect on web accessibility evaluation methods. Human–Computer Interaction 26(3): 246–283. doi:10.1080/07370024.2011.601670.
9. Brinton C., (1965) The anatomy of revolution, New York, NY: Vintage.
10. Churchman C. W., (1967) Guest editorial: Wicked problems. Management Science 14(4): B141–B142. doi:10.2307/2628678.
11. Ellis C. S., Adams T. E., Bochner A. P., (2011) Autoethnography: An overview. Forum: Qualitative Social Research 12(1): Retrieved from http://www.qualitative-research.net/index.php/fqs/article/view/1589/3095.
12. Ellis C. S., Bochner A. P., (2006) Analyzing analytic autoethnography: An autopsy. Journal of Contemporary Ethnography 35(4): 429–449. doi:10.1177/0891241606286979.
13. Federici S., Micangeli A., Ruspantini I., Borgianni S., Corradi F., Pasqualotto E., Olivetti Belardinelli M., (2005) Checking an integrated model of web accessibility and usability evaluation for disabled people. Disability and Rehabilitation 27(13): 781–790. doi:10.1080/09638280400014766.
14. Firth U., (1993) Autism. Scientific American 268: 108–114.
15. Flood R. L., Jackson M. C., (1991) Critical Systems Thinking: Directed Readings, Chichester, England: Wiley.
16. Foucault M., (1980) Power/Knowledge: Selected Interviews and Other Writings, 1972–1977, New York, NY: Vintage.
17. Friedman M. G., Bryen D. N., (2007) Web accessibility design recommendations for people with cognitive disabilities. Technology and Disability 19(4): 205–212. Retrieved from http://iospress.metapress.com/content/G8J2244361428655.
18. Goldman, S. (2008). Brief Report: Narratives of personal events in children with autism and developmental language disorders: Unshared memories. Journal of Autism & Developmental Disorders, 38(10), 1982–1988. doi: 10.1007/s10803-008-0588-0
19. Hulko W., (2009) The time- and context-contingent nature of intersectionality and interlocking oppressions. Journal of Women and Social Work 24(1): 44–55. doi:10.1177/0886109908326814.
20. Israel B. A., Eng E., Schulz A. J., Parker E. A., (2005) Methods in Community-Based Participatory Research for Health, San Francisco, CA: John Wiley & Sons, Inc.
21. Israel B. A., Schulz A. J., Parker E. A., Becker A. B., (2001) Community-based participatory research: Policy recommendations for promoting a partnership approach in health research. Education for Health 14(2): 182–197. doi:10.1080/13576280110051055.
22. Israel B. A., Schulz A. J., Parker E. A., Becker A. B., Allen A. J. I., Guzman J. R., (2003) Critical issues in developing and following community based participatory research principles. In: Meridith Minkler N. W., (ed.) Community-Based Participatory Research for Health, San Francisco, CA: John Wille & Sons, Inc, pp. 53–73.
23. Jackson M. C., (2006) Creative holism: a critical systems approach to complex problem situations. Systems Research and Behavioral Science 23(5): 647–657. doi:10.1002/sres.799.
24. Jaeger P. T., (2008) User-centered policy evaluations of Section 508 of the Rehabilitation Act. Journal of Disability Policy Studies 19(1): 24–33. doi:10.1177/1044207308315274.
25. Jaeger P. T., (2011) Disability and the Internet: Confronting a Digital Divide, Boulder, CO: Lynne Rienner Pub.
26. Kelly B., Sloan D., Brown S., Seale J., Lauke P., Ball S., Smith S., (2009) Accessibility 2.0: Next steps for web accessibility. Journal of Access Services 6(1 & 2): 265–294. doi:10.1080/15367960802301028.
27. Kennedy H., Evans S., Thomas S., (2011) Can the web be made accessible for people with intellectual disabilities? The Information Society 27(1): 29–39. doi:10.1080/01972243.2011.534365.
28. Kennedy, D. P., Redcay, E., & Courchesne, E. (2006). Failing to deactivate: Resting functional abnormalities in autism. Biological Sciences – Neuroscience, 103(21), 8275–8280. doi: 10.1073
29. Lindsay. (2012). Autism, alexithymia, and empathy. Retrieved from http://www.autismandempathy.com/?p=1108
30. Linton S., (1998) Claiming disability: Knowledge and identity, New York, NY: New York University Press.
31. McDonald, K. E. (2012). AASPIRE Healthcare Toolkit summary of evaluation findings. unpublished work
32. Midgley G., (1992) The sacred and profane in critical systems thinking. Systems Practice 5(1): 5–16. doi:10.1007/bf01060044.
33. Minkler M., Wallerstein N., (2003) Community-based participatory research for health, San Fransisco, CA: John Wille & Sons, Inc.
34. Mirchandani N., (2003) Web accessibility for people with cognitive disabilities: Universal design principles at work!. Research Exchange 8(3): Retrieved from http://www.ncddr.org/products/researchexchange/v08n03/8_access.html.
35. Mogendorff K., (2013) The blurring of boundaries between research and everyday life: Dilemmas of employing one’s own experiential knowledge in disability research. Disability Studies Quarterly 33(2): doi:http://dsq-sds.org/article/view/3713.
36. National Science Foundation. (2013). Women, minorities, and persons with disabilities in science and engineering: 2013. Retrieved from http://www.nsf.gov/statistics/wmpd/2013/
37. Nicolaidis C., Raymaker D. M., (2015) Community based participatory research with communities defined by race, ethnicity, and disability: Translating theory to practice. In: Bradbury H., (ed.) The SAGE Handbook of Action Research, London, England: SAGE, pp. 167–179.
38. Nicolaidis C., Raymaker D. M., McDonald K. E., Dern S., Ashkenazy E., Boisclaire W. C., Baggs A., (2011) Collaboration strategies in non-traditional CBPR partnerships: lessons from an academic-community partnership with autistic self-advocates. Progress in Community Health Partnerships: Research, Education, and Action 5(2): 143–150.
39. O’toole C., (2013) Disclosing our relationships to disabilities: An invitation for disability studies scholars. Disability Studies Quarterly 33(2): doi:http://dsq-sds.org/article/view/3708.
40. Oliver M., (1992) Changing the social relations of research production? Disability, Handicap, and Society 7(2): 101–114.
41. Raymaker D. M., McDonald K. E., (2013) Paradigm shifts in disability and health: Toward more ethical public health research. American Journal of Public Health 103(12): 2165–2173. doi:10.2105/AJPH.2013.301286.
42. Raymaker D. M., Nicolaidis C., (2013) Participatory research with autistic communities: Shifting the system. In: Davidson J., Orsini M., (eds) Worlds of Autism, Minneapolis, MN: University of Minnesota Press, pp. 169–188.
43. Raymaker, D. M., Nicolaidis, C., Boisclair, W. C., McDonald, K. E., Wiener, M., Kapp, S., & Ashkenazy, E. (in press). Community based participatory research methods in co-developing an accessible web site for end users on the autism spectrum. Human Computer Interaction
44. Rinaldi J., (2013) Reflexivity in research: Disability between the lines. Disability Studies Quarterly 33(2): doi:http://dsq-sds.org/article/view/3711.
45. Rossman C., Marshall G. B., (2010) Designing Qualitative Research, Thousand Oaks, CA: SAGE Publications, Inc.
46. Senge P., (1990) The fifth discipline: The art and practice of the learning organization, New York: Doubleday/Currency, pp. 174–204.
47. Sinclair, J. (1993). Bridging the gaps: An inside-out view of autism (Or, do you know what I don’t know?). Retrieved from http://web.archive.org/web/20080919074006/http://web.syr.edu/∼jisincla/bridging.htm
48. Sinclair, J. (1999). Why I dislike “person first” language. Retrieved from http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/
49. Vernon A., (1997) Reflexivity: The dilemmas of researching from the inside. In: Mercer C. B. G., (ed.) Doing Disability Research, Leeds, England: The Disability Press, pp. 158–176.