The Voices of Lived Experience : Design Research with Vulnerable People

Transcript

1. Jax Wechsler jax@stickydesignstudio.com.au jaxwechsler.com The Voices of Lived Experience: Design Research with Vulnerable People D E S I G N S T U D I O @jacwex /Jacquelinewechsler
3. Lived experience The experience(s) of people on whom a social, health, mental health issue, or combination of issues, has had a direct impact’. A person unable to take care of themselves, or who is unable to protect themselves against harm or exploitation by reason of age, illness, trauma or disability, or for any other reason. Vulnerable person
4. Jax Wechsler | Sticky Design Studio Designers have power
5. Jax Wechsler | Sticky Design Studio Design is an act of power, or a potential act of power; that is, how design stages people’s agency, the structures that impact people’s agency, and how designed objects themselves seek to perform agential power… Whether aware of it or not, designers bring values and belief systems into the design practice based on their position in the world, and this influences the design in a particular way. Arguing that designers influence their design is not a controversial argument to make, but when design deliberately engages with power, social change, and the political condition, it seems increasingly important that designers critically reflect on their agency and position. https://www.diva-portal.org/smash/get/diva2:1350146/FULLTEXT01.pdf Juul Sondergaard, M L., Hansen, L K. (2017) Designing with Bias and Privilege?
6. Jax Wechsler | Sticky Design Studio Human-centred Design People as experts Empathy +
7. “deep understanding of the problems and realities of the people you are designing for”. IDEO’s Human-Centred Design Toolkit, Empathy brings
8. Photo by Goh Rhy Yan on Unsplash
9. Empathy is not enough. You can’t recognise what you don’t know. If you don’t know how it feels to sleep rough at night how can you recognise that feeling? If you are afraid of being assaulted at night then how can you actually recognise that fear? The reality is, you don’t….and you can’t. We can get close to how it feels but the more privileged you are the more likely it is that these realities are very distant to you to understand.
10. Jax Wechsler | Sticky Design Studio We do not see things as they are, 
 we see things as we are. - Talmudic saying https://unsplash.com/photos/OsC8HauR0e0 https://bigthink.com/Mind-Matters/study-more-privilege-means-less-empathy
11. Jax Wechsler | Sticky Design Studio
12. Jax Wechsler | Sticky Design Studio
13. Jax Wechsler | Sticky Design Studio Continued involvement
16. How might we involve 
 diverse voices of lived experience THROUGHOUT our processes? We need to stop designing FOR people and start designing WITH people.
17. Jax Wechsler | Sticky Design Studio Voices of lived experience Stakeholders with Empathy + Understanding +
18. Jax Wechsler | Sticky Design Studio considerations for conducting research with vulnerable people 
 and including the voices of Lived Experience 8
19. Jax Wechsler | Sticky Design Studio Take a systems view Life for vulnerable people is usually complex. A systems view facilitates understanding. #1
20. Jax Wechsler | Sticky Design Studio • An (evolving) map of the system
 • Recruitment avenues
 • Research focus 
 • Sense-making
 • Intervention/Solutions #1 Take a systems view Life for vulnerable people is usually complex. A systems view facilitates understanding.
21. Jax Wechsler | Sticky Design Studio https://thesystemsthinker.com/integrating-systems-thinking-and-design-thinking/ (1) Integrating systems thinking and design thinking By J. Pourdenhad, E. Wexler & D. Wilson (2) Systems thinking for social change By David Peter Stroh Resources: #1 Take a systems view Life for vulnerable people is usually complex. A systems view facilitates understanding.
22. Jax Wechsler | Sticky Design Studio Mind your mental models Bias is unavoidable. Reflect. 
 Make the effort to know yours. #2
23. • Power dynamics of the system.
 • Understand your privilege • Reflective Sense Making 
 Mind your mental models #2 Bias is unavoidable. Reflect. 
 Make the effort to know yours.
24. Jax Wechsler | Sticky Design Studio Accessible + Appropriate Be appropriate. Enable + scaffold participation. #3
25. Jax Wechsler | Sticky Design Studio • Locations.
 • Language. 
 • Adaptation of methods.
 • Ability is diverse.
 • Culture.
 • Seek advice + support. 
 • Carers. Advocates. Interpreters. 
 Be appropriate. Enable + scaffold participation. Accessible + Appropriate #3
26. Jax Wechsler | Sticky Design Studio Be adaptive Be like water…..
 Flow, Reflect, Adapt. #4
27. Jax Wechsler | Sticky Design Studio • Creating trust + a sense of security is critical.
 • Fatten your project plan.
 • Be flexible.
 • Build in choice. 
 • Working with Advocates.
 • Payment. Be adaptive #4 Be like water…..
 Flow, Reflect, Adapt.
28. Jax Wechsler | Sticky Design Studio Wellbeing Put wellbeing at the heart This includes your own #5
29. Jax Wechsler | Sticky Design Studio • Researcher support. Create avenues. Debrief. Work in pairs.
 • In the beginning.
 • During. Check…and check again.
 • After.
 • Become trauma informed
 Put wellbeing at the heart. This includes your own. #5 Wellbeing
30. Jax Wechsler | Sticky Design Studio Partners not informants Move from consult to collaborate… To co-create #6
31. Jax Wechsler | Sticky Design Studio 
 • Build capacity for participation. This takes time. 
 • Social capital is key
 • Be Realistic + ethical. 
 • On-going engagement 
 #6 Partners not informants Move from consult to collaborate.
32. Jax Wechsler | Sticky Design Studio Ethics protocol Formalise your ethics approach. #7
33. Jax Wechsler | Sticky Design Studio • Commit to ethics
 • Inspiration 
 • Ethical questions for design work Auckland Co-lab- key questions to explore before and during project work 
 • Paper Giant’s Ethics Framework: https://medium.com/@absent/ ethics-in-design-research-d43c56fb8952
 • IDEO’s Little Book of Design Research Ethics : llbodre.ideo.com. #7 Ethics protocol Formalise your ethics approach.
34. Jax Wechsler | Sticky Design Studio Amplify effectively Amplify the voices of lived experience. Facilitate empathy + understanding. #8
35. Jax Wechsler | Sticky Design Studio • Your audiences. • Paint a systems view. 
 • Use Stories. 
 • Amplify real voices. 
 • Amplify for longevity.
 • Involve participants. Amplify the voices of lived experience. Facilitate empathy + understanding. #8 Amplify effectively
36. Amplify effectively Ethics protocol Partners not informants Take a systems view Mind your mental models Accessible + Appropriate Be adaptive Wellbeing 8 Considerations for design research with vulnerable people
37. Power is the ability to alter the states of others - Dacher Keltner
38. Jax Wechsler | Sticky Design Studio Thanks jax@stickydesignstudio.com.au www.jaxwechsler.com www.stickydesignstudio.com.au https://www.linkedin.com/in/jacquelinewechsler/ Twitter: @jacwex D E S I G N S T U D I O