The best innovations for people with disabilities typically come from processes that include them. Co-design—involving users as partners throughout design processes—produces solutions that fit actual needs better than design for users without their participation. Lived experience isn't just useful input; it's essential expertise that professional designers often lack. Understanding how to incorporate lived experience in innovation processes matters for producing technology, services, and systems that actually work.
The Limitations of Designing For
>Traditional design processes treat users as recipients of expert design. Designers research user needs, develop solutions, and test them with users—but users don't shape core design decisions. For disability contexts, this approach has significant limitations.
>Non-disabled designers may not understand disability experience. Even with research, the daily realities of living with disability—the workarounds, frustrations, and unexpected challenges—may not be visible to those who don't experience them. This knowledge gap produces designs that miss important considerations.
>Assumptions about disability shape designs in ways designers may not recognize. Stereotypes about capability, preferences, and priorities influence choices throughout design processes. Without disabled people present to challenge assumptions, they go unexamined.
>Testing designs with users catches some problems but can't fix fundamental design directions already set. Late-stage user input identifies issues but may not fundamentally redirect solutions. Problems avoided through early involvement are better than problems caught in testing.
What Co-Design Means
>Co-design involves users as partners with genuine influence over design decisions, not just as subjects of research or testers of prototypes. Users participate in defining problems, generating possibilities, making choices, and evaluating results.
>This requires different processes than traditional design. Users need meaningful involvement from early stages when directions are set. Design teams need capacity to work with non-designers. Power dynamics need management so that professional expertise doesn't override user knowledge.
>Co-design isn't just consulting users more frequently or extensively. It shifts who makes decisions and whose knowledge counts. Professional designers remain important, but they share authority with users whose lived experience provides different expertise.
>Multiple levels of involvement are possible. Consultation gathers user input without sharing decision-making. Partnership involves shared decision-making. User-led design puts users in primary authority with professional support. Different projects may warrant different levels depending on context.
Lived Experience as Expertise
>Living with disability generates knowledge that no amount of study can fully replicate. Knowing how equipment functions in real-world conditions, understanding the social dynamics of disability, and recognizing needs that don't appear in formal assessments—this expertise comes from experience.
>Recognizing lived experience as expertise requires challenging assumptions about what counts as knowledge. Academic credentials, professional training, and research expertise are valuable, but so is the learning that comes from navigating disability daily. Both types of expertise contribute.
>Diversity of lived experience matters. Disability experiences vary by type, severity, duration, intersecting identities, and individual circumstances. No single person with a disability represents all. Co-design should involve diverse users, not assume one voice speaks for all.
>Peer expertise—the knowledge developed through shared experience and community—adds collective dimension to individual lived experience. Disability communities develop understanding through accumulated wisdom that exceeds any individual's experience.
Implementing Co-Design
>Starting co-design early ensures user influence when it matters most. Involving users in problem definition shapes what solutions address. Involvement only after problems are defined limits influence to predetermined scope.
>Creating conditions for meaningful participation requires attention to accessibility, compensation, and power dynamics. Meetings must be accessible. Participation should be compensated—people's time and expertise have value. Power imbalances between professionals and users must be actively managed.
>Building relationships over time enables deeper collaboration than one-off consultations. When designers and users work together repeatedly, trust develops, communication improves, and collaboration deepens. Ongoing relationships produce better results than transactional engagement.
>Documentation and follow-up demonstrate that participation matters. Users should know how their input influenced outcomes. When participation doesn't affect results, future engagement is discouraged. Closing the loop maintains credibility for co-design processes.
Challenges and Tensions
>Resource requirements for genuine co-design are significant. Time, money, and capacity for meaningful involvement exceed what quick consultation requires. Organizations must commit resources to do co-design well.
>Representation challenges persist. Users who participate may not represent all potential users. Those with resources and capacity to participate may differ from those most marginalized. Intentional recruitment across diversity improves representation but can't guarantee it.
>Professional-user tensions can arise. Professional designers have expertise; so do users. Reconciling different expertise when they conflict requires processes that neither simply defer to professionals nor dismiss professional knowledge.
>Tokenism remains a risk. Organizations may perform co-design without genuine power-sharing, using user involvement for legitimacy without actual influence. The appearance of co-design without its substance does harm by discouraging future engagement.
Examples and Applications
>Technology development increasingly incorporates co-design. Companies developing assistive technology engage users throughout development. User feedback loops shape ongoing product evolution. The best assistive technology emerges from these processes.
>Service design benefits from co-design. Services designed with users—healthcare services, social services, educational programs—fit user needs better than services designed for them. User involvement in service design applies co-design principles beyond products.
>Policy development can incorporate co-design principles. Policies affecting people with disabilities should involve them in development. Public consultation, while not the same as co-design, can incorporate co-design elements.
Questions for Reflection
>Should co-design with disability communities be required for products, services, and policies specifically targeting them?
>How can co-design processes ensure diverse representation rather than involvement of only the most accessible or visible community members?
>What preparation do organizations need to do co-design genuinely rather than tokenistically?