Democratising design for Down Syndrome

Abstract

This thesis explores how the Design for Do-It-Yourself (DfDIY) framework can be adapted to develop a toolkit that facilitates independence, skill acquisition and fosters a sense of pride of authorship for young adults with Down syndrome, advancing the democratisation of design.

The DfDIY framework, developed by Hoftijzer (2024), argues that designers should shift from creators of finished products to facilitators who enable others to make, modify and take ownership of what they build. However, the framework implicitly assumes a ‘layperson’ with neurotypical cognitive abilities and standard physical dexterity. This restricts the participation of people with intellectual disabilities in maker environments. This project identifies that gap and addresses it through the development of an inclusive DfDIY buildkit specifically designed for young adults with Down syndrome.

A literature review across five sub-research questions examined the current state of DIY for people with intellectual disabilities, the physical and cognitive barriers specific to Down syndrome, relevant pedagogical frameworks from special education, the concept of pride of authorship for this demographic and methods for evaluating toolkit effectiveness. The findings informed a set of eighteen design guidelines for an inclusive DfDIY toolkit, covering accessible components, embedded and visual instructions, scaffolded independence, errorless learning, co-creation through tangible choice systems and aesthetic scaffolding.

These findings were translated into a set of requirements and design guidelines that informed the development of Down to Make. Down to make is a brand that develops buildkits for young adults with Down syndrome, each enabling users to independently learn new cognitive or physical making skills, experience a sense of pride of authorship and participate as active makers in the design process. The screen-printing kit described in this thesis is the first kit in the Down to Make range and served as the case study through which the core methodology was developed and tested. The kit includes a layered instructional system combining a full instructional video, a laminated step-by-step booklet and physical cues embedded directly into the components. A colour-coded choice card system placed on a placemat gives users creative agency over what they make, what colour they use and what design they print. The kit was developed by research through design, an expert review and two rounds of user testing with fifteen young adults with Down syndrome aged seventeen to twenty-five.

The testing confirmed that when the instructional system, physical components and choice architecture are designed to remove barriers rather than compensate for them, participants engage independently with a (complex) making task and produce results they are genuinely proud of. Facilitator interventions dropped significantly between iterations and participants consistently demonstrated more independence than their teachers and caregivers had expected. Every participant across both rounds wanted to show their finished object to someone, a clear and consistent indicator of pride of authorship.

The thesis concludes with a set of thirty-eight design guidelines for future designers who want to develop similar kits, covering activity selection, kit design, facilitation and evaluation. These guidelines are intended to be applicable across a wide range of making techniques and to serve as a starting point for extending the democracy of design to people with Down Syndrome and possibly other cognitive disabilities.