Co-designing for Disability: A Self Determination Framework

Technology promises us a huge amount. Better accessibility, greater participation, and fewer disabling barriers. Yet, many products fail to live up to this. Uninformed by lived experience, they fail to understand the real problem. At best, they are a distraction, and at worst they can be actively harmful.

Motivation, engagement, and well-being must be increased in order for tech to be helpful and serve a purpose. Self-determination posits that the fulfilment of competence, autonomy, and relatedness will motivate the self to seek optimal function and growth.

We need to link our tech usage to self-determination as a way to bring our needs front and centre. It positions psychological needs as basic motives rather than mere experiential requirements.

What do we mean by self-determination?

Autonomy Achievement of self-sufficiency and control over decisions and aspects we can control over our life. Autonomy describes “people’s universal urge to act in accord with their integrated interest and values”.
Why? This represents a strong tendency in reaction to a life of learned helplessness and constant challenges that make you feel a lack of control. Motivations may be skewed to the intrinsic-led, driven by personal enjoyment, but also tempered by extrinsic, influenced by external factors and producing demand avoidance.

Relatedness A feeling that there exist others with at least a significant extent of shared experience, which lends credibility and strength rather than always feeling different to the majority. The importance of relatedness is in forming secure emotional connections and feeling integrated into groups. Relatedness describes “the propensity to experience the sense of belongingness and connectedness to others”.
Why? It becomes essential to have access to alternatives who share common experiences when you are most regularly familiar with those who do not understand you and to whom you must always make efforts to explain or respond to mistaken assumptions.

Competence A sense of being in control and a mastery of using your skills and finding new things intuitive. The tools should land in a comfort zone that allows you to stretch yourself regularly and within reason for growth and progression, while not making you feel unable and incompetent and therefore less likely to thrive. Competence describes “people’s inherent desire to be effective in dealing with the surrounding environment”, which is the desire of feeling capable and effective.
Why? How the feeling of being a deficit because of comparing you to what the normal world expects.

Design Patterns

A core set of design patterns, which guide us to how solutions might take shape:

  1. Transparency - to support legibility and reduce covert workings. It refers to a sense of autonomy and our control over data. Can we trust it?
  2. Co-production - to include and shape a solution with a range of diverse perspectives. This can evoke relatedness, to feel engaged, motivated, and feel part of a larger team.
  3. Individualisation - to mould to specific needs and anticipate. Does this understand and serve me and thus lend me autonomy? Am I in control and does it suit my abilities by lowering barriers and access?
  4. Interoperability - so we can bring our app and data with us, and leverage existing systems holistically to serve our needs across various contexts and functions. I can assert and orchestrate my needs consistently across the expanse of my tech engagement.
  5. Data sovereignty to assert our ownership and control of what is ours. Providing the feeling of independence and control over myself and my data.

Marc Goblot MBCS FRSA, We and AI, runs social venture the Digital Diversity Living Lab, which brings together people with lived experience, researchers, and digital expertise for collaborative R\&D using inclusive user research and systems mapping to co-design accessible digital solutions in joint ventures. As a father and advocate for his autistic, learning disabled, and ADHD daughter - and following his own late diagnosis as autistic and ADHD - Marc brings lived and professional expertise to inclusive innovation. He founded Tech For Disability to support disability tech startups and build a thriving ecosystem. He is actively involved with the Royal Society of Arts, British Computing Society, and NHS SE London ICB. Marc advises the Cabinet Office Disability Unit and Minister for Disabled People, to represent the views of disabled Londoners, and on the risks and benefits of AI and tech for disabled and neurodivergent people. Connect at https://www.linkedin.com/in/marcgoblot/ Tech For Disability at https://techfordisability.org

Resources

References

Theory – selfdeterminationtheory.org
SDT and Autism - https://neuroclastic.com/aba-and-self-determination/
(PDF) Social Innovation Living Labs as Platforms to Co-design Social Innovations
2016_DeHaan_etal_J_Happiness_Stud.pdf- This looks at hybrid approach to Capability and Self-determination theories.
Phenomenological research methods from Ned Redmore:
Ben Simmons in this regard:

  • Simmons 2018 - The phenomenology of intersubjectivity and research with profoundly disabled children: Developing an experiential framework for analysing lived social experiences
  • Simmons & Watson 2014 - The PMLD Ambiguity: Articulating the life-worlds of children with profound and multiple learning disabilities

Palgrave Neurodiversity Studies Methodologies-269-290 NR Chapter.pdf
Thepotentialofthefractionsoflifeworldforinclusivequalitativeinquiryinthethirdspace.pdf
Capturing Lived Experience: Methodological Considerations for Interpretive Phenomenological Inquiry - Julie Frechette, Vasiliki Bitzas, Monique Aubry, Kelley Kilpatrick, Mélanie Lavoie-Tremblay, 2020
Enablers and barriers to engaging under-served groups in research: Survey of the United Kingdom research professional’s views.

Autonomy Benefits and Risks of Assistive Technologies for Persons With Intellectual and Developmental Disabilities Applying Self-Determination Theory to Support Neurodiverse 18-Year-Olds: A Holistic Approach
Self-determination and attitudes toward artificial intelligence: Cross-national and longitudinal perspectives - ScienceDirect
Autonomy Benefits and Risks of Assistive Technologies for Persons With Intellectual and Developmental Disabilities
Technology – Page Array – selfdeterminationtheory.org
Equitable AI Knowledge Hub | Disability-Inclusive innovation | Zero Project
Constructivist Learning Theory - Educational Technology
Constructivist Theory: A Quick Guide

https://www.sciencedirect.com/science/article/pii/S0262885624004529?via%3Dihub
AI Data-Driven Personalisation and Disability Inclusion
Intellectual Disability and Assistive Technology | Frontiers Research Topic
Autonomy Benefits and Risks of Assistive Technologies for Persons With Intellectual and Developmental Disabilities
Zero Project Database | For a world with zero barriers
Distributed agency in smart homecare interactions: A conversation analytic case study - Saul Albert, Lauren Hall, 2024

Systems Thinking Resources - BigThinking.io
A Guide to Systems Research: Philosophy, Processes and Practice | Request PDF
Living Labs and Open Innovation approaches to scale impact for human wellbeing | Frontiers Research Topic
A co-design living labs philosophy of practice for end-to-end research design to translation with people with lived-experience of mental ill-health and carer/family and kinship groups

Standards:

Digital Public Goods Standard - Digital Public Goods Alliance
GitHub - DPGAlliance/dpg-resources: Resources for Digital Public Goods
Sustainability Goals Database DPG Registry
https://www.digitalpublicgoods.net/
https://www.digitalpublicgoods.net/toolkit
Digital Impact Alliance (DIAL) https://github.com/DPGAlliance/dpg-resources?tab=readme-ov-file

What you can do, find out more, how you can get involved, if interested, engage with us: