Episode 36: Georgia Aitkenhead, Bastian Greshake Tzovaras, and Susanna Fantoni of The Alan Turing Institute on AutSPACEs

Guest
Georgia Aitkenhead | Bastian Greshake Tzovaras | Susanna Fantoni
Panelists
Georgia Bullen | Richard Littauer | Django Skorupa
Show Notes
Hello and welcome to Sustain Open Source Design! The podcast where we talk about sustaining open source with design. Learn how we, as designers, interface with open source in a sustainable way, how we integrate into different communities, and how we as coders, work with other designers. On this episode, our guests are from The Alan Turing Institute in the UK. Today, joining us are Georgia Aitkenhead, Bastian Greshake Tzovaras, and Susanna Fantoni, who are here to talk about an open source project they are working on called, AutSPACEs, which is a co-designed citizen science platform that investigates autism and sensory processing. You’ll learn their backgrounds, why they’re doing this project, and the vast importance in this kind of participatory research, involving people’s voices and views, and letting autistic people lead. While you listen, you can’t help but notice the passion they have for research and how this project is so important to them. Download this episode now to learn more!
[00:01:10] Our guests introduce themselves, tell us their backgrounds, and more about their project, AutSPACEs.
[00:03:38] To help us understand more about the project, Georgia Aitkenhead and Susanna share with us how long the project has been going on and the specific key moments have been for them.
[00:09:56] In their project, Georgia Aitkenhead tells us their process of how they listen to everyone while not burning out with the amount of feedback they get from all the people, and Bastian explains how they are not at that larger scale area yet and only working with a small community of participants.
[00:14:26] A question comes up regarding design choices and governance, and Georgia Bullen wonders how our guests are making it with this project, and how they’re thinking about that plays into the platform itself that they are all working on.
[00:31:20] In thinking about accessibility, Django wonders if they’ve ever considered publishing information on a landing page or to make it accessible to people who might be the most literate for GitHub and technical repositories.
Quotes
[00:04:22] “There’s often a disparity between research that gets funded and research that autistic people as a group tend to prefer.”
[00:08:17] “A computer algorithm can work out that I’m autistic in less than two minutes, but it took fifteen years for humans to do it.”
[00:08:51] “The whole assessment process is written just for men by men.”
[00:10:21] “Be very deliberate about how you address some of the disbalances and representation that exist and think about the demographics, people, or situations people might be in. That means they might be likely excluded from research.”
[00:27:13] “We have this really vital challenge to address in terms of making sure that the spaces that are open are open genuinely for everybody, not just for people who are already technically confident, neurotypical, or in privileged demographics.”
Spotlight
[00:36:35] Georgia’s spotlight is Hometown: A Mastodon fork, and some articles that are on her reading list relating to online community spaces.
[00:37:09] Bastian’s spotlight is Biopython.
[00:37:36] Georgia Aitkenhead’s spotlight is The Turing Way.
[00:38:22] Susanna’s spotlight is RPTools.
[00:39:00] Richard’s spotlight is Clinical Partners.
Links
Open Source Design Twitter (https://twitter.com/opensrcdesign)
Open Source Design (https://opensourcedesign.net/)
Sustain Design & UX working group (https://discourse.sustainoss.org/t/design-ux-working-group/348)
SustainOSS Discourse (https://discourse.sustainoss.org/)
Sustain Open Source Twitter (https://twitter.com/sustainoss?lang=en)
Richard Littauer Twitter (https://twitter.com/richlitt?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor)
Georgia Bullen Twitter (https://twitter.com/georgiamoon?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor)
Django Skorupa Twitter (https://twitter.com/djangoskorupa)
Georgia Aitkenhead email (mailto:[email protected])
Bastian Greshake Tzovaras Twitter (https://twitter.com/gedankenstuecke)
Bastian Greshake Tzovaras Website (https://tzovar.as/)
Bastian Greshake Tzovaras email (mailto:[email protected])
Susanna Fantoni Twitter (https://twitter.com/skfantoni)
Susanna Fantoni Website (https://skfantoni.com/)
Susanna Fantoni email (mailto:[email protected])
The Alan Turing Institute (https://www.turing.ac.uk/)
AutSPACEs-GitHub (https://github.com/alan-turing-institute/AutSPACEs)
Autistica (https://www.autistica.org.uk/)
CommunityRule (https://communityrule.info/)
Governance Readiness Checklist (https://sustainers.github.io/governance-readiness/)
Patient-Led Research Collaborative (https://patientresearchcovid19.com/)
Hometown: A Mastodon fork (https://github.com/hometown-fork/hometown)
Who Would Anyone Use Another Centralized Social Media Service After This? (Tech Dirt) (https://www.techdirt.com/2022/12/21/why-would-anyone-use-another-centralized-social-media-service-after-this/)
Private and Public Mastodon (ongoing by Tim Bray) (https://www.tbray.org/ongoing/When/202x/2022/12/30/Mastodon-Privacy-and-Search)
Biopython (https://biopython.org/)
The Turing Way (https://the-turing-way.netlify.app/welcome.html)
RPTools (https://www.rptools.net/)
Clinical Partners (https://www.clinical-partners.co.uk/)
Credits
Produced by Richard Littauer (https://www.burntfen.com/)
Edited by Paul M. Bahr at Peachtree Sound (https://www.peachtreesound.com/)
Show notes by DeAnn Bahr Peachtree Sound (https://www.peachtreesound.com/) Special Guests: Bastian Greshake Tzovaras, Georgia Aitkenhead, and Susanna Fantoni.

Guest

Georgia Aitkenhead | Bastian Greshake Tzovaras | Susanna Fantoni

Panelists

Georgia Bullen | Richard Littauer | Django Skorupa

Show Notes

Hello and welcome to Sustain Open Source Design! The podcast where we talk about sustaining open source with design. Learn how we, as designers, interface with open source in a sustainable way, how we integrate into different communities, and how we as coders, work with other designers. On this episode, our guests are from The Alan Turing Institute in the UK. Today, joining us are Georgia Aitkenhead, Bastian Greshake Tzovaras, and Susanna Fantoni, who are here to talk about an open source project they are working on called, AutSPACEs, which is a co-designed citizen science platform that investigates autism and sensory processing. You’ll learn their backgrounds, why they’re doing this project, and the vast importance in this kind of participatory research, involving people’s voices and views, and letting autistic people lead. While you listen, you can’t help but notice the passion they have for research and how this project is so important to them. Download this episode now to learn more!

[00:01:10] Our guests introduce themselves, tell us their backgrounds, and more about their project, AutSPACEs.

[00:03:38] To help us understand more about the project, Georgia Aitkenhead and Susanna share with us how long the project has been going on and the specific key moments have been for them.

[00:09:56] In their project, Georgia Aitkenhead tells us their process of how they listen to everyone while not burning out with the amount of feedback they get from all the people, and Bastian explains how they are not at that larger scale area yet and only working with a small community of participants.

[00:14:26] A question comes up regarding design choices and governance, and Georgia Bullen wonders how our guests are making it with this project, and how they’re thinking about that plays into the platform itself that they are all working on.

[00:31:20] In thinking about accessibility, Django wonders if they’ve ever considered publishing information on a landing page or to make it accessible to people who might be the most literate for GitHub and technical repositories.

Quotes

[00:04:22] “There’s often a disparity between research that gets funded and research that autistic people as a group tend to prefer.”

[00:08:17] “A computer algorithm can work out that I’m autistic in less than two minutes, but it took fifteen years for humans to do it.”

[00:08:51] “The whole assessment process is written just for men by men.”

[00:10:21] “Be very deliberate about how you address some of the disbalances and representation that exist and think about the demographics, people, or situations people might be in. That means they might be likely excluded from research.”

[00:27:13] “We have this really vital challenge to address in terms of making sure that the spaces that are open are open genuinely for everybody, not just for people who are already technically confident, neurotypical, or in privileged demographics.”

Spotlight

[00:36:35] Georgia’s spotlight is Hometown: A Mastodon fork, and some articles that are on her reading list relating to online community spaces.
[00:37:09] Bastian’s spotlight is Biopython.
[00:37:36] Georgia Aitkenhead’s spotlight is The Turing Way.
[00:38:22] Susanna’s spotlight is RPTools.
[00:39:00] Richard’s spotlight is Clinical Partners.

Links

Open Source Design Twitter
Open Source Design
Sustain Design & UX working group
SustainOSS Discourse
Sustain Open Source Twitter
Richard Littauer Twitter
Georgia Bullen Twitter
Django Skorupa Twitter
Georgia Aitkenhead email
Bastian Greshake Tzovaras Twitter
Bastian Greshake Tzovaras Website
Bastian Greshake Tzovaras email
Susanna Fantoni Twitter
Susanna Fantoni Website
Susanna Fantoni email
The Alan Turing Institute
AutSPACEs-GitHub
Autistica
CommunityRule
Governance Readiness Checklist
Patient-Led Research Collaborative
Hometown: A Mastodon fork
Who Would Anyone Use Another Centralized Social Media Service After This? (Tech Dirt)
Private and Public Mastodon (ongoing by Tim Bray)
Biopython
The Turing Way
RPTools
Clinical Partners

Credits

Produced by Richard Littauer
Edited by Paul M. Bahr at Peachtree Sound
Show notes by DeAnn Bahr Peachtree Sound

Special Guests: Bastian Greshake Tzovaras, Georgia Aitkenhead, and Susanna Fantoni.