I recently had the honor of speaking at the conference of RESKO, our sister organization in South Korea. The theme of the conference was “User-Centered Design” and I took the opportunity to examine the different ways that this concept can apply to our field. The idea of User-Centered Design is something everyone in RESNA would no doubt claim to agree with, though we should perhaps not take our adherence to its principles for granted. UCD is defined by Wikipedia as “a framework of processes in which the needs, wants, and limitations of end users of a product, service or process are given extensive attention at each stage of the design process.” In this piece, I will explore how it is relevant to all aspects of our work and identify some key challenges that it poses for us.
Research: Much has been written about Participatory Research (PR) in the social and political arena, which is carried out with and by local people rather than on them, thereby shifting the location of power in the research process. One important goal of the PR process is to build capacity among the research participants. This concept can and should be extended into other areas of research. RESNA’s own Research Guidelines highlight the importance of user involvement in funding decisions, and the design, evaluation and execution of research. The guidelines further argue that AT and RE research should be evaluated based on outcomes relevant to individuals with disabilities and that AT performance standards committees should include consumers and practitioners. Implementation of these ideas can be hindered by a shortage of people with disabilities entering the research field.
AT Product Design and Services: Successful product design efforts go beyond simply considering the end user and create mechanism for input and contributions from users in a range of environments. This is exemplified by the collaborative networks established by leading international wheelchair design projects. User involvement is also central to web design for accessibility and usability, as articulated by the Web Accessibility Initiative (W3C). Even within the realm of the Maker Movement and hackathons, we have seen positive examples that bring people with disabilities into the process as advisors and co-creators. A consumer-driven design process is fundamental when creating and providing services for an individual user, with the person with the disability seen both as an expert in what they need and what works for them and as a partner in arriving at the solution. RESNA’s 2015 Do-It-Yourself Award winner, Zebreda Dunham, educated and reminded us about the capacity of people with disabilities as inventors and designers in their own right.
User-Centered Policy: When we as AT professionals, manufacturers, vendors, researchers, and educators set policy priorities, are we focusing primarily on our own needs or do we also promote the broader concerns of the people needing the technology? Besides funding for AT and medical needs, these issues include civil rights and non-discrimination; inclusion and participation in society and culture; access to the built environment, employment, and recreation; and involvement in decision making about laws impacting them. (See RESNA Policy Position Statement.) Finally, we have to always consider who sets the policy action agenda, who speaks for people with disabilities, and who leads these efforts.
Ongoing challenges to our field include:
- Research: Do we involve and engage people with disabilities in research as participants helping to frame the project, not just as subjects? What can we be doing to help and encourage students with disabilities to become researchers?
- Product Design and Service Delivery: What are we doing to raise the standards of quality, appropriate design, and the direct involvement of the end users? Do we make people with disabilities central to the design process and respect their input as designer/inventors? Have we embraced a consumer-driven approach to service delivery and problem solving, viewing them as expert collaborators?
- Policy: How are we addressing the concerns, struggles, and initiatives defined by communities of people with disabilities who we base our careers on? Are we ready to accept their priorities and leadership?
These challenges apply not just to our field in a general way but to each of us personally, as we consider what more we might be doing to encourage and support people with disabilities in transitioning through the roles of: Patients → Clients → Self-Advocates → Partners → Peers → Leaders. I look forward to your thoughts and comments.
Ray Grott, MA, ATP, RET
President, RESNA Board of Directors
March 9, 2016