Exploring the Use of Participatory Design to Improve Inclusivity: A Research Paper
Overview
This paper reviews a variety of articles and papers that focus on the challenges, best practices and advantages of implementing participatory design with individuals who have physical and mental disabilities. Involving marginalized participants in the participatory design process can be complex, and it elicits the flexibility of the designers and researchers involved. Participatory design with individuals who have disabilities requires considerations that are unique from those used in participatory design that utilizes participants without disabilities. The approach taken by the team leading these participatory design workshops to balance participant abilities, communication preferences, and ethical concerns, can greatly impact the success of the participatory design. This paper seeks to provide a greater understanding of how researchers and designers in the HCI community have approached their firsthand experiences in participatory design with a variety of participants with disabilities. While participatory design with people with disabilities is not a common practice, the increased drive towards accessibility, and guidance of experienced designers and researchers may be helpful in encouraging further exploration of this design practice. Inclusivity should be treated as a necessity, rather than an option, and participatory design provides the opportunity to create this through interactions with users who have disabilities.
Why Participatory Design Should Include Individuals with Disabilities
It creates inclusivity.
Using individuals with disabilities in participatory design includes them in the creation of digital products that can be used by everyone, regardless of their abilities.
It provides early product input.
Involving participants with disabilities in research highlights needs and challenges early on in the research and design process. This can lead to more focused participatory design workshops that address true needs, rather than assumed needs.
It gives users with disabilities a voice.
Participatory design lets marginalized individuals provide input on details that might otherwise go unnoticed. It allows them to help shape a product that works well for them, and demonstrates how they would use a product.
It prioritizes actual disabilities over simulated disabilities.
There is no replacement for firsthand input from someone with a disability. Simulated disabilities make assumptions, and do not account for all aspects of a disability, and may be less thorough than actual input from a disabled participant.
Participants
Because participants with cognitive and physical disabilities range greatly in their communication abilities, their input may be supplemented by proxies. A proxy is often a family member or caretaker who represents the participant, and speaks on their behalf. The role of a proxy is not be confused with actual participants’ contributions, and should be treated as supplemental feedback to bridge the communication gap between the research and design team and participants.
Challenges
Participants have mixed abilities and preferences.
Navigating the array of abilities, limitations, and levels of interest of participants with physical and cognitive disabilities can be difficult. This can be amplified with the addition of participants without disabilities.
Proxies can be overly influential.
While the involvement of caretakers can bridge the communication gap when working with participants with limited communication abilities, over reliance on caregiver input can delegitimize feedback from participants.
There can be ethical concerns when working with people who have disabilities.
Working with groups of adults and children with limited decision making and communication abilities raises ethical concerns. Potentially negative effects on participants and populations must be carefully considered before carrying out participatory design.
UX practitioners lack experience working with individuals who have disabilities.
Even experienced designers and researchers must adapt their communication methods and expectations when conducting participatory design with participants that have physical and cognitive disabilities. This can be even more challenging for less practiced moderators.
Best Practices
Allow additional time and resources for participant recruitment.
Recruiting participants with disabilities may require additional time and creativity. It’s important to recruit diverse participants and consider their range of abilities, even when working with individuals who experience the same type of disability.
Maintain participant engagement through mutual communication.
Even when recruited, there are no guarantees that participants will show up or remain active for the duration of multiple participatory design workshops. Reciprocity is a key component in winning and keeping participants’ attention in the short and long term.
Use the preferred communication methods of participants.
Participants with mental and physical disabilities may have limitations and preferences in their communication methods. To maximize feedback from all participants, it is important to understand the range of communication abilities within a participatory group, and cater to these.
Benefits
It generates empathy.
One of the primary reasons for implementing participatory design with participants who have disabilities, is to gain empathy for real users with real disabilities.
It provides valuable product input that might otherwise go unnoticed.
Users with disabilities are valuable resources for researchers and designers, because of their first-hand experiences with a disability. They can provide feedback that others cannot.
It creates inclusivity.
Digital products should not need modifications to work well for disabled users. Products should strive to work just as well for users with, and without disabilities.
It builds confidence and community.
Individuals with disabilities can feel alienated from technology and social interaction. Seeking their involvement in participatory design is a way to increase their confidence and build community with other participants who may have similar challenges.
Conclusion
Participatory design with participants who have physical and cognitive disabilities is not easy. It requires thoughtful planning, flexibility, and the desire to truly understand users’ needs. Designers and researchers continue to learn through their firsthand experiences. They share their successes and failures, in hopes that the design community will increase the use of participants with disabilities in participatory design.