Intersections of Critical Systems Thinking and Community Based Participatory Research in Developing a Web Site for Autistic Adults

摘要

People with disabilities, including those on the autism spectrum, comprise the worldu27s largest minority and experience significant inequities in Internet use. Existing standards for accessible web sites are necessary but not sufficient without the direct engagement of end users in identifying access needs. Yet little is known about methods for effective engagement, and there are no systematically derived Web accessibility guidelines for autistic end users. Here I explore a hybrid approach to direct engagement using critical systems thinking (CST) and community based participatory research (CBPR) during the co-development of a healthcare-focused web site by the Academic Autism Spectrum Partnership in Research and Education (AASPIRE).I explore these ideas on three levels: theory, practice, and critical self-reflection. On the theory level, I examine the common philosophical and historical roots of CST and CBPR, ways in which they intersect and complement, and propose the hybrid approach exemplified by AASPIRE. On the practice level, I explore our web site development process and evaluate the accessibility, usability, and acceptability of the web site for autistic end users; from that work, comes a set of recommendations for working with people with disabilities in technology development and a set of accessibility guidelines for autistic end users. On the critical self-reflection level, I inquire into my own experiences as an insider-researcher during the web site development. I then synthesize the levels to evaluate whether or not taking a hybrid CST/CBPR approach to web development was effective, as indicated by the teamu27s ability to function as an emancipatory learning organization (an indicator of effective systems thinking on an organizational level), and the overall usability and accessibility of the web site. The result of the synthesis suggests a hybrid CST/CBPR approach was effective.Implications of this work include innovations in CST methods for operationalizing its commitment to human emancipation, potential for drawing a more ideologically-aligned systems thinking literature into the domain of CBPR, a means for individuals wishing to create a more power-balanced learning organization, innovations around including people with disabilities in research and technology development, more accessible web sites for people on the autism spectrum, and a potential small shift of dominant discourse around autism, disability, and the value of insider-researchers over time.