events · · 12 min read

Co-designing for Disability: A Self Determination Framework

The handout given at the ACM Conference on Fairness, Accountability, and Transparency in Athens.

At the ACM Conference on Fairness, Accountability, and Transparency (ACM FAccT) in Athens, we formed part of the We and AI presence. This was a workshop to AI developers on how sensory boxes and objects could be used to educate AI literacy for all people, for example, learning disabled/intellectually disabled people. As part of this, we shared a handout on some pointers for the AI community for including all people in their work.

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.

Resources

The 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

This looks at a hybrid approach to Capability and Self-determination theories.

Phenomenological research methods from Ned Redmore at Open University:


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... | NIHR Open Research
Read the original article in full on NIHR Open Research: Enablers and barriers to engaging under-served groups in research: Survey of the United Kingdom research professional’s views
Frontiers | Autonomy Benefits and Risks of Assistive Technologies for Persons With Intellectual and Developmental Disabilities
This paper explores the ways in which assistive technologies (ATs) can both promote and undermine the autonomy of Persons with Intellectual and Developmental…
Frontiers | Autonomy Benefits and Risks of Assistive Technologies for Persons With Intellectual and Developmental Disabilities
This paper explores the ways in which assistive technologies (ATs) can both promote and undermine the autonomy of Persons with Intellectual and Developmental…

The Centre For Self Determination Theory and Technology

Technology – Page Array – selfdeterminationtheory.org


Zero Project's Equitable AI Knowledge Hub

Equitable AI Knowledge Hub | Disability-Inclusive innovation | Zero Project
The Equitable AI Knowledge Hub is a free public resource designed to support advocates, developers, researchers, and practitioners working at the intersection of AI and disability inclusion. It’s associated with the Equitable AI Alliance’s work.

Constructivist Theory: A Quick Guide
This guide provides an overview of constructivist theory including its origins, key principles, and implications for research.

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

Zero Project Database | For a world with zero barriers | Zero Project
The Zero Project Database is based on extensive peer-reviewed research. It’s mapping and connecting solutions, experts, and organizations for a world with zero barriers. It is publicly available and free to use for anyone who wants to help creating a world with zero barriers.


Distributed agency in smart homecare interactions: A conversation analytic case study - Saul Albert, Lauren Hall, 2024

Systems Thinking Resources
Systems thinking is a discipline used to understand systems to provide a desired effect. It provides methods for “seeing wholes and a framework for seeing interrelationships rather than things, for seeing patterns of change rather than static snapshots.” The intent is to increase understanding and determine the point of “highest leverage”, the places in the system where a small changes can make a big impact.


A Guide to Systems Research: Philosophy, Processes and Practice | Request PDF

Living Labs and Open Innovation approaches to scale impact for human wellbeing
Living labs are strong instruments that support healthy communities, cities and regions in their transition towards a resilient and sustainable future based on open and inclusive innovation. As orchestrators of open innovation environments, Living Labs involve all stakeholders to tackle real-life problems and co-create concrete, long-term impacts which can be scaled-up. Here we invite contributions on Living Lab research best practice.The Living Lab model as an emerging practice focusing on open innovation has particular resonance in contexts that have the wellbeing and quality of life at their heart with a focus on the role of technologies supporting this aim. Living lab networks, such as the European Network of Living Labs (ENoLL), have a global presence and provide a collaborative approach in bringing together stakeholders to explore and design technological solutions addressing real-world challenges. A critical difference to other forms of innovation or technology incubation is that the living lab approach centers the design and evaluation of these innovations directly with citizens and users so they can shape the innovation to their real-life environments based on needs and expectations with real impact on their quality of life and wellbeing. <br/><br/>At present, the potential has not been fully recognized in our understanding of the extent of living lab approaches in the design and development of solutions to solve complex problems in our society and scale them wit…
Frontiers | 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
There is increased recognition that people with lived-experience of mental ill-health ought to be centred within research design, implementation and translat…

Standards:

Digital Public Goods Standard - Digital Public Goods Alliance

Digital Public Goods Standard - Digital Public Goods Alliance
The Digital Public Goods Standard is a set of specifications and guidelines designed to maximise consensus about whether a digital solution conforms to the definition of a digital public good. According to the UN Secretary General’s Roadmap for Digital Cooperation, digital public goods are open-source software, open standards, open data, open AI systems, and open


GitHub - DPGAlliance/dpg-resources: Resources for Digital Public Goods

GitHub - DPGAlliance/dpg-resources: Resources for Digital Public Goods
Resources for Digital Public Goods. Contribute to DPGAlliance/dpg-resources development by creating an account on GitHub.


Sustainability Goals Database DPG Registry

Sustainability Goals Database | Embedding Project
The Embedding Project is a global public-benefit research project that helps companies embed social and environmental factors across their operations and decision-making.


https://www.digitalpublicgoods.net/

Digital Public Goods Alliance - Digital Public Goods Alliance
Unlocking the potential of open-source technologies for a more equitable world. Explore and learn more about digital public goods The Digital Public Goods Alliance is a multi-stakeholder initiative that accelerates the attainment of the Sustainable Development Goals by facilitating the discovery, development, use of, and investment in digital public goods. Learn More


https://www.digitalpublicgoods.net/toolkit

Digital Public Goods Alliance
Unlocking the potential of open-source technologies for a more equitable world


Digital Impact Alliance (DIAL) https://github.com/DPGAlliance/dpg-resources?tab=readme-ov-file

GitHub - DPGAlliance/dpg-resources: Resources for Digital Public Goods
Resources for Digital Public Goods. Contribute to DPGAlliance/dpg-resources development by creating an account on GitHub.

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

Amplify: The Inclusive Innovation Collective - Diversily
Join our collective movement to make inclusive innovation practices the norm, not the niche.

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