Collective Care Transmission Forms came from
Merging of 2 track proposals - Data Feels and Pirate Observatory
Track Proposer’s were unable to meet or discuss till a few days before Relearn
So proposed 2 days of working through Data Feels – research focused project - and 2 days from Pirate Observatory ideas which would be more practical activity. They proposed 3 parts to the track -
1. Data Feels – is Karisa’s research project, which she is undertaking in NYC. Kym presented Karisa’s research as they have a longstanding collaboration and crossovers in interest
2. Transmitting and Receiving Care in Relearn
3. Bodily Exercises throughout the week, as small breaks
We only considered part 1.
Karisa’s research – Collective Care groups that form online to deal with specific diseases / conditions they face - Diabetes, HSCT – was new to members of the Track and contained a lot of specific information.
During the first discussions it was decided not to continue with some groups as they use Facebook to communicate. Involving Facebook would be too broad a discourse, issues of privacy and data collection in social media already being a huge topic. Too problematic for this track to incorporate when trying to discuss Healthcare as well.
Decision to focus on the group Open APS – people with Type1 Diabetes who use raspberry pies, Open Source software, GitHub etc – to self regulate their insulin levels. Their Hacking approach, and use of tools that relate to those employed in Relearn, seemed a more fitting and productive route.
But, then secondary discussions did not develop into action. They revolved around difficult areas –
As well dealing with the grey areas of -
Healthcare in the USA
Legality (altering a body and a medicated prescription)
Social Justice (Open APS detracts attention from the face there is no generic insulin, it is expensive)
And overall the track held the position of outsider researching a group who share a common aim – to find a solution to their condition. Members of the track cannot relate – ultimately – to the specific concerns of Open APS.
The Last Conversation centred on how physical groupings of people relies on aligned political opinion to stay ‘together’ and keep a cohesion.
A question, can this be made or maintained online?
How much Commonality is needed to form and sustain an online community?
Discussion centred on Ethics is always difficult to move in.
For tracks made in these areas what would be useful to enable action?
Summaries of previous discussions in Relearn?
Longer build up to allow for more thoughtful presentation
and time to give responses that can then be built on
More things raised in ethics -
Why is the Care track nearly all women, while the Design track is nearly totally men?
We are all the same race
We are all able – bodied
5day all day programme relies people to give up work / only caters to those who are self employed and could be problematic for those who are carers – in whatever form.
Can provisions be made for those who would struggle to attend?
In all manner of forms –
childcare (could be on site and dispersed throughout the group)
Signing / alternative ways of reading and listening
You should really be thinking about like a script
The healthcare actor
It enters the room and then
Cohesion and contagion
What kind of attitude should you have?
You are not here when I need you
Sitting on the outside
through the displays
that are Smiling
What are you doing behind
The predetermined limits
Stretched in misinterpretation and entanglement of
Wires interlocked and heads down
Restart and push
Implicit over explicit
How do you prefer to be addressed?