Designing With & For people with disabilities:
A realistic look at Participatory and Inclusive Design approaches
Technological development has traditionally depended on user involvement in the design and testing phases so that the process culminated with a highly usable and desirable product (Coleman et al., 2012). That has been true even more so in recent years in the era of digital technologies and social media. Societies have embraced a shift to a ‘participatory culture’; consumers create, share and respond to media (Jenkins, 2006). A diverse group of people with varied roles in the process are coordinated towards a shared goal and can have a successful outcome (Lankshear & Knobel, 2010).
End-users ceased to be just the recipients and testers of products and became equal partners in the design process (Scaife & Rogers, 1999). Instead of influencing the outcome they had a relationship with the designers; from helping with the standardization of products they became engaged in their customization. The term user involvement evolved from user centred, to participatory, through to inclusive design.
Participatory Design (PD)
PD involves stakeholders in all phases of the process, focusing as much on the process as on the product (Carmichael et al., 2006). Getting a diverse group of stakeholders involved in the design process in a collaborative manner is the premise for PD, co-creation and co-design (the terms are used in similar contexts).
Co-design/co-creation are often used by designers to understand their end user’s cultural, societal and financial situations. Instead of observing the users from a distance, these approaches allow the designers to connect with the users at an emotional level, to examine the motivations of their behaviour. Moreover, these approaches combine the development and piloting phases of a research project, making the process more efficient (Plumley & Bertini, 2014).
Inclusive Design
Inclusive design also advocates for the collaboration of all relevant stakeholders, but goes a step further and involves end users from the very start of the process. It considers the needs of marginalised groups in the design process (Keates et al., 2004). It is thus, a more appropriate approach with a cohort that has varied range of needs such as people with disabilities, where the previous approaches are less successful in providing a helpful framework (Gregor et al., 2005). This approach increases the likelihood that the products developed are more effective in supporting social inclusion (Abascal & Nicolle, 2005).
User involvement under the microscope
It has become abundantly clear that user involvement (in any form) in the development and design process of a product or service is necessary and valuable; all stakeholders can contribute at every phase of the process and under the right conditions they can offer at the very least a different perspective if not fresh ideas and become the source of a creative spark (Sanders, 2002). User involvement has been implemented since the 1970s and its benefits have been proven in several studies and settings [e.g., special educational needs; Benton & Johnson, 2015] since then, yet there are those who believe it has been underutilized as an approach (Plumley & Bertini, 2014).
At a macro level, it can be argued that adopting such an approach requires a new mindset, with regards to the fact that there can be more than one experts, all can be creative and good listeners (Plumley & Bertini, 2014). User involvement in the design process can sometimes be a luxury if we take into consideration time constraints and the funding implications (Grudin, 1991). More importantly though, it may not be feasible to develop an experimental design with and without user involvement, because identifying the controlling factors may only be possible during the participatory process (Frauenberger et al., 2015), which puts into question the real extent of its effectiveness as an approach. The varied stakeholders might identify the goals of the development and design process from different angles, which would then require a synthesis of the varied views and opinions. Also, difficult ethical problems can arise when involving users with disabilities in the design process (e.g. confidentiality, disclosure, competence) (Alm, 1994).
At a micro level, there are specific challenges when people with disabilities are the end users in this process because it may be difficult to get informed consent and they may have very specialised and little known requirements. Moreover, conflicts between accessibility and ease of use may arise (Sleeman, 1998). There is an inherent difficulty in finding and recruiting users that are representative of their larger cohort, due to the plethora of conditions and level of their severity (Newell et al., 2011). When the end users are people with Intellectual Disabilities (IDs), communication difficulties can be a barrier for them to express their views (Lewis & Porter, 2007) they may have limited imagination skills and they may struggle to understand the concept of perspective — someone’s viewpoint (Millen et al., 2011). In such instances, there is a need to consider using varied methods to get their views (e.g. augmentative/alternative communication, sign language) and show some flexibility to ensure they find the approach enjoyable and useful (Neale et al., 2001).
A recent meta-analysis of studies into user involvement in serious games showed some surprising results. When the target group were co-designers they were less effective in changing behaviour than when the target group was only testers in the game. At the same time, user involvement showed less effectiveness in increasing the participants’ self-efficacy (DeSmet et al., 2016). Users engaged in participatory design in educational games were focused on design elements to the detriment of the educational content (Ke, 2014).
Should everyone be involved in design? Technology giants claim, “their greatest products came from needs people hadn’t yet articulated” (Skimen, 2012). Jenkins believes that although “not every member must contribute, all must believe they are free to (do so)” and their contribution will be valued (Jenkins, 2006).
It is then necessary to examine the caveat that all can contribute ‘under the right conditions’. The approach could be more successful if the users had sufficient subject or design knowledge and experience (Yip et al., 2013), to recognize what is relevant to their task and meet the educational goals (Druin, 2002). The developers also need expertise in user involvement design approaches so that they can provide clear instructions and positive reinforcement (Joubert & Wishart, 2012), they can clearly describe the process/techniques (Frauenberger et al., 2015) and ask good questions (Skimen, 2012).
