Collective Care Transmission Forms

We opened this space to host a pre-relearn discussion around the track Collective Care Transmission Forms. Here, we can collect ideas for practical exercises, case studies, software, references and links. This pad is public and is meant for both track initiators and the other relearners. The content on this pad will be used as the skeleton of the track, a basis to depart from at the beginning of the week. If you're interested to contribute to this track, please feel free to use this pad in the coming weeks.

PROPOSAL: track to have 3 elements - 

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Topic: collective care / sharing feeling through cyberspace. 
Recently we've been studying patient groups that formed online to learn how digital boundaries form a collective care.  And we've been experimenting with ways to collectively feel through cyberspace.
The groups we've been studying are:

a. Canaries - 120+ femme and non-gender conforming artists with chronic auto-immune illnesses that support each other and, as a collective art practice, focus on communal care.
about: http://temporaryartreview.com/notes-for-sick-time-sleepy-time-crip-time-against-capitalisms-temporal-bullying-in-conversation-with-the-canaries/

b. Closed HSCT Facebook group - 10,000+ people with auto-immune disease supporting each other in internationally seeking a treatment with limited accessibility.
(NB: hHematopoietic stem cell transplantation) 
Hematopoietic stem cell transplantation (HSCT) is the transplantation of multipotent hematopoietic stem cells, usually derived from bone marrow, peripheral blood, or umbilical cord blood.)

c. Open Artificial Pancreas System -  245+ people with type 1 diabetes that are hacking medical devices to design their own automated treatment.
https://github.com/openaps/openaps

All the groups operate autonomously. Their development is organic; supported by digital technologies which allow them to share information and keep in contact online. They receive no funding and run on volunteer labor. For the most part, they started in and are primarily based in the US. They all identify with chronic auto-immune conditions, a tiny sliver of all chronic illness. Together they suggest an extreme variety of needs and expectations of care, communication, and data. 

We've taken recordings from Skype interviews and assembled some audio clips that suggest the groups real world data produce: 
patients as digital labors
precarious collectives
interfaces of feeling
world making projects

We'd like to try to use some data forensics tools, to try to see what kinds of individual data are being given away through patients use of - for example - facebook. 

 -- how do we trace where and how data travels.... potential to focus on the OpenAPS group's new program called "Autotune" that uses massive amounts of patient's data to customize their medical devices responses/dosing?
http://openaps.readthedocs.io/en/latest/docs/Customize-Iterate/autotune.html

Facebook (general) data usages that are extra to consent:
http://veekaybee.github.io/facebook-is-collecting-this/

Affect studies: Emotional Contagion:
http://www.pnas.org/content/111/24/8788.full

Possibility for forensics?
https://www.sleuthkit.org/autopsy/features.php

Chrome dev options
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 (NOTES):
We are interested in sharing this research from a perspective of critical feminist materialism, engaging with affect.  Together we could explore... can healing feelings be shared / transmitted via sound/image/word? Can they avoid capture and skip past time + space? Work with boundary negotiating tools and legal/value implications of digital collective care.


some relevant quotes:
Laura Oriol:
"listen through your skin"

Fred Moten:
"listen to the sound through one another's skin"

Side Room:
"Hearing as a way of touching distance, distance as a way of listening closely.
Practice of listening: Your listening is heard." 

Ultra Red:
"Learning to listen is the intentional task of solidarity; listening in tension."

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2) RELEARN ATTENTIVENESS

PROPOSAL:
    To work with the XMPP in the second half of the week
    specific look at affect/feeling transmission through XMPP

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3) Roving, popping up embodied practice vague ideas:


This article also introduced me to Paul / Beatrice Preciado and Manifesto Contrasexual -
"In his Manifesto Contrasexual (2001), Paul Preciado advances the queer concept of “contrasexuality.” Described as a refusal of sexual norms, contrasexuality prohibits any articulation of sexuality as naturalized. Indeed, speaking the word forces one to say “against sexuality”—that is, against an understanding of sexuality as constituted by dominating and hegemonic powers. The body and sexuality are sites of struggle for power and politics. To enact contrasexuality, then, is to performatively and perversely produce contra-pleasures in the body, which in turn evokes a utopian horizon of political transformation. Contrasexuality is at once a refusal, and the constitution of an alternative."

Blas and Ovul Durmusoglu collaborated on workshops called Dildo Techtonics - not sure exactly what they encompassed but it involved drawing dildos on your arms and playing them like a violin 
(http://www.zachblas.info/works/contra-internet/)
perhaps a practical element in the track could involve playing and listening to body parts ... in some way ...! 
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    NOTES:
Idea 4. Bad Vibrations
I would be very interested to bring the work Technologies of Care by Elisa Giardina Papa into the mix /showing / discussion. 
for combining our interests around online communication, care, receiving at distance ….
http://www.elisagiardinapapa.org/
Aspects of the work are available as a zip file, in which you can find the scripts of all the different online workers the artist contacted, an ASMR artist, online dating coach, bot? virtual boyfriend etc … "Empathy, digital labor, and new ways to serve and care on the network are the subjects explored in Elisa Giardina Papa’s Technologies of Care, commissioned by Rhizome for the Download. The Download is a series of Rhizome commissions that considers posted files, the act of downloading, and the user’s desktop as the space of exhibition. Elisa Giardina Papa's Technologies of Care presents portraits of online workers on the front page ofrhizome.org in a 26MB ZIP file that explores gender, empathy, digital labor, and new dynamics of care and service on the network. Each portrait in
the ZIP is its own folder, activated by an HTML file marked â€oeplay_it.â€. [Paul Soulellis]

Could these scripts be acted out / Repeated unusually in a workshop?
Interested in how this work relates back to XMPP – knowing / seeing the maker , being the maker!

Quote from the sound files you shared - “who are we to limit ourselves by these labels, just go off and do the thing”

A game!
You can download information as scripts – could these scripts be performed like a play?! (This could relate well to another track …!)

Like reading out -
“ close_window(16, 'audio');//dopo 17 secondi di model 5 chiudi
l'audio close_window(0.5, 'model5'); close_window(0, 'q1');//dopo
0 secondi dal precedente chiudi NON!!! dall'inizio? se metto zero
chiude con il preceente });”

Another quote from Metropolis article that could relate, thinking about ( Care and Intimacy ) -
Karisa: Facial recognition searching, our backs to the webcams. Eyes half-shut, shaking, and listening to you both breathe and shake, my body mostly dissolved into the liquid gurgles of VoIP feedback loops

Idea 5. Birthing a Ghost
A baby idea … Could the words we accumulate through Relearn on XMPP come together in some form of poetry making / collective healing / creation of a new soul !!!
At the end of Jan Voerwert’s text Personal Support – How to Care? (thank you Viki) He brings in … The last page of Virginia Woolf , A Room of One’s Own

“If we escape a little from the common sitting-room and see human beings not always in their relation to each other but in relation to reality; and the sky, too, and the trees or whatever it may be in themselves; if we look past Milton;s bogy, for no human being should shut out the view; if we face the face, for it is a fact, that there is no arm to cling to, but that we go alone and that our relation is to the world of reality and not only to the world of men and women, then the opportunity will come and the dead poet who was Shakespeare’ sister will put on the body which she has so often laid down. Drawing her life from the lives of the unknown who were her forerunners, as her brother did before her, she will be born. As for that coming without that preparation, without that effort on our part, without that determination that when she is born again she shall find it possible to live and write her poetry, that we cannot expect, for that would be impossible. But I maintain that she would come if we worked for her, and that so to work, even in poverty and obscurity, is worth while.”

Jan’s essay ends with
“This notion of care is a mode of exposed potentiality, embodied through intellectual labour on the threshold of the public or in a situation of conviviality without a contract, in a house that is less and oikos and more of a Pandemonium, and is care as a dedication that does not indebt the other or ingratiate oneself to the other because it is dedicated to the future arrival of a different sprit.”

Can our online relationships reform a better way to care for each other?
Thinking about this in terms of character building online , communicating into an empty space , your
interest in data forensics – looking at something in a new context , (potentially without ownership) etc …

NOTES - Flowing from thoughts on how data travels ... very loosely! Wanted to share this article on E-flux, Contra-Internet by Zach Blas. 
- http://www.e-flux.com/journal/74/59816/contra-internet/
Possibilities of Paranodal structures as ways of communicating and socially organising - 
"Ulises Ali Mejias introduces the “paranode,” a term that conceptualizes that which is other to—or an alternative to—a network configuration. The paranode is an antidote to “nodocentrism,” which, argues Mejias, is the dominant model for organizing and assembling the social" 
Is this an idea that can be applied to forms of digital collective care, and perhaps relates to the groups you have been studying? Where are we communicating and how ... 

This article also introduced me to Paul / Beatrice Preciado and Manifesto Contrasexual -
"In his Manifesto Contrasexual (2001), Paul Preciado advances the queer concept of “contrasexuality.” Described as a refusal of sexual norms, contrasexuality prohibits any articulation of sexuality as naturalized. Indeed, speaking the word forces one to say “against sexuality”—that is, against an understanding of sexuality as constituted by dominating and hegemonic powers. The body and sexuality are sites of struggle for power and politics. To enact contrasexuality, then, is to performatively and perversely produce contra-pleasures in the body, which in turn evokes a utopian horizon of political transformation. Contrasexuality is at once a refusal, and the constitution of an alternative."

Blas and Ovul Durmusoglu collaborated on workshops called Dildo Techtonics - not sure exactly what they encompassed but it involved drawing dildos on your arms and playing them like a violin 
(http://www.zachblas.info/works/contra-internet/)
perhaps a practical element in the track could involve playing and listening to body parts ... in some way ...! 

Data forensics as structured data - our physical and mental states turned to data - the implications of this? 
Data Smells 
https://smellofdata.com/
The sense of smell helped early humans to survive. But now that our hunting and gathering has moved to the digital environment, our noses can no longer warn us of the lurking dangers in the online wilderness.
The Smell of Data is a new scent created to instinctively alert internet users of data leaks on personal devices.
A project by Leanne Wijnsma and Froukje Tan.

https://labs.rs/en/the-human-fabric-of-the-facebook-pyramid/

Initial idea - PIRATE OBSERVATORY:

Pirate Observatory. A Free, Clandestine Bootleg 1

Mind
Mouth
Body
Ear
Space

"If the human ear can be compared to a radio receiver that is able to
decode electromagnetic waves and recode them as sound, the human
voice may be compared to the radio transmitter in being able to translate
sound into electromagnetic waves. The power of the voice to shape air
and space into verbal patterns may well have been preceded by a less
specialised expression of cries, grunts, gestures, and commands, of song
and dance. The patterns of the sense that are extended in the various
languages of men are as varied and styles of dress and art. Each mother
tongue teaches its users a way of seeing and feeling the words, and of
acting in the world, that is quite unique." (MCLUHAN 1964)

Through the medium of radio, we could like to conduct learning through close observation how we see
and feel spoken words. What does it mean to speak and listen when your aural conversation spans
distance?

Questions we are holding -
How does it feel to Transmit and how does it feel to Receive?
What are the benefits in physical distance (ability to be a passive listener / a bold speaker)?
How could you make a chain of speaking and listening that steps out of its echo chamber?
How can you share sound waves?
Why is radio a pervading technology (it does not away)?
What does it feel like for your voice and ears to move between public and private realm?
How can we protest capitalist value with intangible tools?

1 Words from the Wikipedia definition of Pirate Radio 
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DAY 2:

    LINKS - 
DAY 1 pad link: http://osp.kitchen:9999/p/relearn-2017-CCTF
    day two pad: http://osp.kitchen:9999/p/relearn-2017-CCTF-2
   DAY 3 pad link:  http://osp.kitchen:9999/p/relearn-2017-CCTF-3

    --------------------------------------------
    notes -people in the track this morning:
     anne - care >> chelsea manning performance, care as agile yoga, queer feminist hacker space
     individual care = capitalist bullshit
     collective - 
    a purpose of resistance possibly
    hacker/queer/feminist - making bots to protect people - collective asshole prevention

    colm- modes of address/different forms, language of informality online. ('well this is embarrassing!, uups!, you've ended up in the wrong place')
    friendly nature hides a way that websites work, non-obvious agendas, hide the way service work
    digital literacy, propose a degree of care - 'we have your best interests at heart'
    facebook's more granular gender options
    administrations of care depend on seemingly commonly understood 

   QUESTIONS I PASSED TO KARISA, her response:

    regarding questions:
q. how does the activity feed back to the groups?
a. the other relearn groups or the case studies? i'm hoping any techniques and discoveries can be useful to any work that grapples with bodies/data. and if we do get to work with the case studies i would want that research to be shared with the subjects of the study of course! and this would be part of the reparative critique. 

Facebook would tie to HSCT and yes, there's loads of study/criticism/writing on Facebook but if HSCT is the chosen ticket... I joined one of their closed sub-groups today. I've attached screenshots to share. I wonder if admins can detect when screen caps are taken?

If Canaries is of interest they do most of their communicating via a Google listserve and skype. I'm on their listserve. I know they are working on group protocols and reconsidering whether Google is the best option. I could send a screen capture but i'd want to redact some email addresses first...

OpenAPS is the group most directly dealing with code, etc. and in that way they seem like the easy fit but on the other hand, unless there's someone with Type1 Diabetes, it might be hard to fully engage.

Facebook captures your pauses in keystrokes/procrastination/worry/ i.e.: EDITING - and calls it 'self censorship'
https://www.aaai.org/ocs/index.php/ICWSM/ICWSM13/paper/viewFile/6093/6350

23 and me:
https://www.23andme.com/en-gb/

karisa & kevin's design practice:
http://willworkforgood.org/

crossing of percentage of certainty that you have a certain health risk, that makes you potentially less employable
(social eugenics)

Suggestion from Hans yesterday:
https://labs.rs/en/

    necessity of connection
    fucked up part - filling a gap, of a need of communication that few can provide
    this need puts feminist understanding of expedience/energy consumption/
concept of a threat model
question of who is in these groups - is it like buying a pin to support a cause - i..e family members/friends
or (kym) notices the weight of researchers/film studies students/artists etc etc who join direct action groups in the past 4 yrs for example
intellectual trading on niche 'urgency' (herself included)

geo political - colonisation of care - do people in mexico also have access to care in the same way?
yes citizens of countries like mexico have access to the same HSCT care for less $ - only a few countries allow "medical tourism" - meaning they treat non citizens.
colonization of care occurs at every stage of medicine - most clinical trials take place in poor communities where the only medical care they receive is participating in the trial.

willful sharing/unwillful sharing there is a different kind of discussion
willful = go for it, i want the easy access, the connection speed
unwillful = you have problems with it, small acts of resistance, but 

facebook > we don't wanna go down that route, there is a lot of info online already and this can be a black hole for the week
secondary collecting of posting is too big an animal 
person to person care is given is maybe more interesting - type of messaging - getting back to the notion of care 
in terms of types of messages, there'll be more different types of authoritarian messages (?) in the APS
can imagine its quite a knowledge based authority, but how is the language of care expressed in the git/

https://github.com/openaps/openaps
http://openaps.readthedocs.io/en/latest/docs/Customize-Iterate/autotune.html

data brokers lists
https://www.propublica.org/article/everything-we-know-about-what-data-brokers-know-about-you
https://lists.nextmark.com/market;jsessionid=747BB7EAFCB566B3B950388819FE63FA?page=order/online/datacard&id=131838
http://www.towerdata.com/email-intelligence/pricing

when you are in pain - obvious to say - but you dont really care about floss probably

anne- if solving the problem is profitable, you dont have hte main type of disease then medical industry is not going to make a solutiuon for you
lobby the industry, is one other method rather than creating your own
totally different to care about privacy issues, to caring about it in healthcare

self quantification > another huge topic that maybe we dont want to sink into
find a way that we dont ignore all these things but we dont fall into them

questions for karisa:
    the autonomising process - how dangerous is the APS build and transfer  insulin
    the automation process is slowly coming to market as a black box device. there are certainly dangers to building your own APS - the wrong amount of insulin can be fatal - but so far no one has been harmed. they've built in lots of safety precautions into the process. clarifying info: to build an APS you have to already have 2 other medical devices: 1. the implanted continuous glucos monitor and 2. the insulin pump - APS allows the two devices to communicate with one another.
    why /how did you choose these 3 studies?
    i picked 3 care groups that share information online - focusing on chronic auto-immune diseases (the immune system was influential in network theories developing round AIDS + internet) because they mostly effect women in parts of the world that are most saturated with digital technologies (some feel there is a correlation) and are not quickly diagnosed or effectively treated due to bias in the medical industry. there's a lot of admin and emotional labor in care work and it's gendered and unwaged. i also wanted to pick groups that challenged my own assumptions about fb, quantified self, alternative meds, etc. and would complicate any institutional criticism. taken together their methods could support eachother in how they grow. i also studied patientslikeme.com which is like the facebook of collective care and feeds directly back to pharma companies, 23andme, etc. they are easy to criticize and also interesting. if the case studies seem too specific i'd look there. 
https://www.patientslikeme.com/

    hey karisa!!
    hi! should i hop on skype? i just need a min or...
    that would be ace. At the moment there is a lot of noise in the next room, but what about at 9am your time. would that be ok?
    perfect! i can make coffee!
    nearly there -

fablab at hotel dieu hospital in paris : echopen project http://echopen.org/

WEBSITES OF APS:
https://openaps.org/
    precursor: https://diyps.org/
    aps also started connecting with "open humans" https://www.openhumans.org/


medially credible aesthetics
colour, clean
wordpress site

COPYRIGHT:
https://github.com/openaps/docs/blob/master/license.txt


an apple a day keeps the doctor away

women on waves - works in the sense its using media tech to reach women who need abortions, 
without community platform
legal/illegal acts



APS interested in accelerating the process of automonitoring
Making an FDA approved algorithm ASAP
just came across this! FDA new regulatory approach to "real world" data (like openaps). OpenAPS sees this as a positive but i feel mistrust (corps will profit from volunteer labor etc.)
https://s3.amazonaws.com/public-inspection.federalregister.gov/2017-18469.pdf

my mistake - i said dana helped create nightscout but i was thinking of autotune. you are right - the nightscout is part of the available/existing pieces that openaps incorporates

regarding language of OpenAPS - it's been observed that people who find it most difficult to decipher are those who have the most engineering/programming expertise. they come with certain expectations and openaps doesn't match those expectations so the less connected you are to maker culture is sort of an advantage. *should note i think this is the case now that it's an established system but what it took to get openaps started was very much a maker mentality of hackers/programmers/engineers.  Dana is none of those things - but was motivated by need/necessity/brought the collective together. 

also - the openaps community will help new people through the process
we could go on gitter or twitter and ask whatever we want i have looked a bit at policy/design culture/theory but have not gotten technical and hope this is a format to do so

this paper gets technical about autotune: http://www.abstractsonline.com/pp8/#!/4297/presentation/45926

big data/care management
http://www.cloud-council.org/deliverables/CSCC-Impact-of-Cloud-Computing-on-Healthcare.pdf
- FROM THE PDF:
 Taking these statistics into consideration, the following four trends are driving the 
healthcare market dynamics:
1. Escalation of consumerism. This has refocused 
the healthcare provider market from volumebased to value based. 

2. consolidation of services
Healthcare data management includes stringent requirements for security, confidentiality, 
privacy, traceability of access, reversibility of data, and longterm preservation. Hence, cloud 
service providers must address all of these legal, regulatory and accreditation requirements. 
the regulation of wearables is shady legal territory and clouds are def where the industry sees things going.

3.
Influence of digitalization IT is the enabler that allows consumers to take greater control over 
their healthcare choices yes- medical expertise is challenged by patient groups like the ones i've been studying and the healthcare industry is trying to flip this - to make this a cost-savings advantage for them (instead of expensive clinical trials they tap into real world data, instead of building caregiving into cost of treatment the patient groups can form their own support networks and shoulder the cost, and it furthers the neoliberal agenda of accountability falling on individual users and their choices rather than institutions)

4. prevention of disease >> but the explanation doesnt say why preventative healthcare should rely on cloud computing??
my guess would be that preventitive med would benefit from other data sets like flight patterns, diet, genomes, etc. to predict spreads of epidemics, probabilities of devloping an inheritable disease, etc. 
https://www.ibm.com/watson/health/explorys/
https://www.ibm.com/watson/health/value-based-care/

we have a question - hi Natascha!
do you pay to have the implants already at the hospital - natascha just joined the group, she is someone that I wanted to put you in contact with - and she was asking why people decide to build these rigs - is it because they cant afford health care? 
I know you have already answerd this a bit on skype but just for us to be clear, if you know?
implants can be covered by insurance, paid for by patient or provided by the medical device company - at no patient cost - as part of a study (if you are eligible to participate in a study)
the rigs are being built because there is no closed loop option available on the market - and it allows patients to feel more in control of their lives/health (sleep through the night, personalize their dosages, able to travel more freely). the people who build rigs have enough access to healthcare to improve upon the most high-tech, most expensive treatment for type 1 diabetes (the implanted CGM - continuous glucose monitor and pump) so it is not a choice made as last resort. this is part of why they are interested in fda regulation because they are operating under the assumption that fda approval would improve access to lower income people with type 1 - since the CGMs are now going to be covered by US gov programs Medicare and Medicaid https://finance.yahoo.com/news/medicare-announces-criteria-covering-dexcom-123000917.html
Hi Karisa, nice to meet you this is Natacha speaking, do you know if this movement has ties out from usa and mexico, europe maybe?
yes - all over - if you go on twitter and search #OpenAPS you will see people from Germany, Japan, etc
i am just most familiar with the policy/regulation end of things in the US
and nightscout (related to aps) has 40,000+ people worldwide
So then I guess health care access must be different in many cases
for sure. i would assume more people in EU would have access to CGM and pump than in US? what do you think?
Difficult to know I wonder about the legality of it also health is much more controlled in europe maybe its more difficult to diy those props...
in uk: http://www.bbc.com/news/technology-36711994
cool - this article mentions openAPS (which uses Nightscout) - saying there are 85 people using the system but as of today the conservative estimate is over 360 people have built openAPS it also seems Tim Omer is connected to openAPS https://www.aec.at/aeblog/en/2017/03/27/die-tic-tac-tik-von-timothy-omer-im-hacken-von-diabetes/
openAPS operates in a legal gray area everywhere. 
if we want to inquire with openAPS makers in the EU I can suggest starting with some of these folks on twitter: @ceben80 @BlutzuckerCoach @Tims_Pantsjust because they seem to already be public facing advocates and may be willing to discuss


Natascha - the benefits of health are not correlated with the beneftis of FLOSS
sorry, what is FLOSS? free libre open source software (sorry)
intel 

clouds issue
http://www.nightscout.info/   (The Nightscout system allows you to attach (or pair) a device to the Dexcom receiver that transmits the glucose readings to the Internet, where any web-connected device can view the numbers. It’s that simple.)
it means it s optional?any device that knows the url can view the numbers. a device can sync wtih nightscout just for monitoring - it's usage is broader than the openAPS community's 

APS ONLINE CONNECTIONS (recap):

OPEN APS GITHUB:
https://github.com/openaps/openaps

OPEN APS:  
http://openaps.readthedocs.io/en/latest/index.html#

GITTER FORUM:
https://gitter.im/nightscout/intend-to-bolus

OPEN HUMANS:
https://www.openhumans.org/

NIGHTSCOUT
http://www.nightscout.info/

    ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

Welcome to day 3!

DAY 1 pad link: http://osp.kitchen:9999/p/relearn-2017-CCTF
DAY 2 pad link: http://osp.kitchen:9999/p/relearn-2017-CCTF-2
DAY 3 pad link: http://osp.kitchen:9999/p/relearn-2017-CCTF-3
DAY 4 pad link: http://osp.kitchen:9999/p/relearn-2017-CCTF-4


HOW MANY
diabetis
http://www.euro.who.int/en/health-topics/noncommunicable-diseases/diabetes/data-and-statistics
Type 1 diabetis
https://www.diabetes.org.uk/About_us/News_Landing_Page/UK-has-worlds-5th-highest-rate-of-Type-1-diabetes-in-children/List-of-countries-by-incidence-of-Type-1-diabetes-ages-0-to-14/

Just two generations ago, one in five people who were diagnosed with Type 1 diabetes died within 20 years, according to the National Institute for Health. (That figure climbed to one in three if you stretch the term to 25 years.) Now the number is substantially less – 3.5 percent within 20 years, 7 percent within 25.

Research in trasplants looks into freeing patients from insulin injections
https://www.diabetesresearch.org/first-type-1-diabetes-patient-in-europe-is-free-from-insulin-therapy-after-undergoing-diabetes-research-institutes-biohub-transplant-technique

Info of Hybrid closed loop called hybrid because you still need to input manually some information, a couple (or more) glucose tests made manually every day to calibrate the
https://www.childrensmn.org/2017/05/03/technology-update-hybrid-closed-loop-system/

also a free software health platform: GNU Health http://health.gnu.org/

Type 1 - needs insulin - lifelong condition
type 2 - develops later in life, through lifestyle/risks  

A- doenst see community care in the APS, could be a thousand other community led project
maybe its not a smart idea to tackle the group constellation on the internet - when we are interested in this tension 


Natacha - social problem of diabetes - food crisis, and you have in front of you the person whos idea is that its not their fault that they are sick
to me health is a personal responsibility the same way that social is a responsibilty

A: the diabetes card... when the argument comes from need...
Vikci: that a wider group of people are taking risk when they dont have any idea of tech, 
A: medications are also technologies
N: abortion, people practiced on themselves before allowed to be medicalised
Anne: asking more experienced members of hte community to check mods in APS
A: what is the improvement on the normal? is it microdosing, proecis
the seamless loop is interesting 

https://www.apple.com/researchkit/

physiological element compared to database
machine doesnt know the specification of your body
typical quantification (what is your pain between 0 and 10)
recommended ranges 
comes from comparing sign of your body to median response 
comes from having to communicate it, your perception

V: interesting of how the perception changes who use the rig, to numerical values
dont know if its good or bad
A: factor of 'innovation' coming on the table / the efforts of the people, everyone will be more happy/ greater good argument, 
at the moment it seems like the people came up with something to make life better
Anne: then you will have someone to blame other than yourself - dont wanna say belief system, because its more bigger than that, but there are issues of liability
A: medical intervention, not geeky electronics
N: there is one system being legalised mini-med, hybrid closed loop still needs calibrating everyday 
V: does this closed loop replace the listening to your body or it enhances it? karisa: i feel it enchances the listening to the machine - a cyborg relation. the patient is in communication with their medical device. the device responds/adapts to the organic and vice versa. where as the market-ready/black box devices do not allow for reciprical knowledge sharing and the patient feels less in control. the most interesting is the translation of feelings and affect to physiological symptoms-->numerical valuesk: that's what this app does: http://flaredown.com/ it even asks patients to rate their level of "brain fog"!

d: difference in seeing/feeling of reassurance if and when the closed microdosing works is visable or invisable 

respecting the pain too much ?
good tension : benefit of the group vs innovation ? (not sure if it was this version)

Legal and critical issues
As Karisa said open apps open in a legal gray zone however  while they feel they take legal risks  I think they still stay in the techno optimistic domain. And therefore they are not targeted as "dangerous".
k: yeah - openaps is techno optimistic - accelerating innovation - and "dangerous" to 1. the ethics of open source and 2. other kinds of collective care (that resist data surveillance) because it lacks a critical view of their work's implications for others.
Yes as long as their community stays underground but it seems they would happily welcome fda approval yes for me that is the danger! And also that might be why they are not targeted as "dangerous " by authorities (I mean not censored). yes they lack self censorship in a way - like how their work sets new precedents and could impact others who aren't so excited to embrace constant digital data gathering/surveillance - & what about their relations with the open humans platform ?the openaps community started an advisory committee or something that manages the data sets donated by aps users to vet research, and set terms (allowing a little more ownership and better ethics than, say patientslikeme, when donating data to medical studies) but this is the way openaps, i believe, is starting to get their work validated by more traditional channels of expertise rather than challenging them if that makes sense . yes ! thanks !

 making it easier for tech and health industries to take from the maker community and profit from "real world" labor/evidence that is civilian/non-expert. also - when something like openaps (closed loop) is fda approved and mass produced i would guess it will not allow patients to tinker with the code and continue to make iterative adjustments.  Yes I imagine also it is a new form of participative research but still embeded in the capitalist system.yeah - i see it in continuoum with aids activists that got involved with the fda and clinical trials - it had at that moment this potential to redefine boundaries or something but it was quickly absorbed. aps is super legible to the existing systems and advances them - it's just harder to be critical when it's yeah - making life more livable and trying to make the "more livable" more accessible -- that's part of the tension 

who benefits from a system like OpenAPS ?
While it is undeniable that the care being of diabetis patients is essential the overwhelming consensus on the goodness of a system like open apps raises questions specially with regards to other issues that are not publicly addressed such as the abscence of a generic insuline, and the cost of the licensed one. This issue is almost never covered in the press, at least not nearly as often as you can see open apps, a community of some hundred people.yes - the trend in research for type 1 treatements (and i think this can be said as true for all health studies) focuses on innovation and profitable gadgets rather than the most simple, low cost alteration to the existing/available treatments- but swaths of type 1 populations are dealing with insulin self-injections still and would most benefit from generics. the tic tac container used to house many openaps rigs is used as an emblem of how tiny but also cheaply assembled the hardware is. this obscures the true socioeconomic landscape.

it benefits pharmaceutical companies because they realise their is a market about it. they can cut some of their r&d costs, while marketing it to other persons ( for instance, is there a way a device like that could tell a person which has not been diagnosed with type 1 diabetes if her insulin level is correct ? could it become a product that could be sold to "healthy" people ?)aps doesn't make the measurements - it only takes the measurements from medical device (Continuous Glucose Monitor) is CGM used daily by people who are not diagnosed with type 1 diabete ? - not that i am aware of - it's implanted on the abdomen, leg or arm as a method of constant measuring to replace pricking yourself for a blood sample several times a day - a very specific tech for type 1 it seems so it's not something that would cater towards transhuman/posthuman market (living longer, improving one's body for "immortality" etc) ? ha! it's kind of hard to imagine but also not -- in a body mod kind of way https://www.grifgrips.com/ i was thinking of the relationship between transhuman and disabilities - the way that outside/inside body apparatuses are created to adjust to that but then bodies with protheses are seen as stronger, therefore become the new norms and then people without those disabilities get them to improve their bodies, etc. Yes for example what is happening for audio implants in the deaf peoples community, they become a factor of acculturation, do you have any helpful links about this?the people who wear them are not deaf but they don't either are fluent in speaking and in addition their presence weakens the deaf community as they do not contribute to promote their culture anymore.such an interesting example - thanks. the self-improvement/body enhancement industry (quantified selfers) are sure to find a way to appropriate any kind of "wellness" tech 

it benefits fda because it gives them test data, ie: people are not dying so it must be doable, would the fda be able to test legally? (evidence from people giving their data is now becoming a part of the fda infrastructure to approve medicine - link in pad day 2). "good feeling" from them as people are expecting such devices to enter the market). fda and other such regulating bodies in different countries) approving free/open source software and/or open hardware would go against their general practice (no liability in floss licences : "use this software/hardware at your own risk" is the opposite of what they do). this is so double edged. for instance - so many patients are vocal about side effects for treatments that were never part of the clinical trial that led to fda approval and so are unrecognized by the medical community and considered anecdotal. so they are asking for their  "real world" evidence to be made valid. but on the other hand pharma companies, etc. are super interested in having a massive pool of "real world" data with less regulation to improve/alter their health outcome stats over time. i see any kind of real world data incorporation into fda protocols as a boone for the pharma/insurance industry. i'm interested in groups/data that's illegible or creates noise/opposition to industries perhaps : pharmaceutical + internet/surveillance (facebook, palantir, etc yes!) ones. i thought maybe if openaps was reminded of unintended use and how others are lurking/profiteering they might be more interested in ethical issues of privacy, etc.

it benefits the makers movement because it proves they do not only do useless stuff, that it can improve the lives of people in pain.

it benefits private and public bodies that finance the maker movement, citizen science, etc, and more generally innovation (the people making openaps are pursuing a open & free research, so they are good examples to others that sometimes it's a road to go towards) transparency in research and "nothing about us without us" slogan of the disability movement would suggest that openaps is moving in the direction patients would support - but it's the finance side of things that seems to benefit the most - and the legal - as noted elsewhere - the liability falls on the patient, and the labor, the burden of care/maintenance, etc. (this is why i also consider openaps collective care because the burden of care for the system is distributed amongst the group of patients - they are not just end users)

It benefits the press because its a good story
totally- everyone wants a piece of this story and Dana has a degree in communications/PR - that's her day job. so she works with the media. in speaking with her, i noticed her fluency in buzz words.

If benefits "women in tech" : for instance https://twitter.com/FNGhadaki/status/903146570023141376
totally 

It can be used as a prognostic for good health, desensitivises takes part of a normalisation of a process that can become trivial, it might even become normalize and recomended by insurances (for instance if one is using such a device as a diabetes patient, one would have to pay extra cost).yes - i could see that happening!

I would like to maybe read or listen to a person's account of using this rig. twitter gives a good window #openaps i also compared aps use to a short writing about an old glucose meter - it was a first person account published in the book Evocative Objects
I'm thinking of the movement between physiological affect (feeling bad/glucose level ~feels~ wrong) front end (interface of glucose monitor, led screen) raspberry/code (that you have programmed all or in part yourself). would that be calibration ?could you say more about this? i'm not sure i understand what calibration means for such device (and it seems that's a daily operation) ? yeah - the device connects the constant measuring of blood sugars to the device that pumps insulin: in order to calibrate the levels to steady - not spiky - in an automated way. it's function doesn't rely on how a person feels - but the person has already been trained that they can't go on (trust) feeling they must always test their levels and respond based on the numbers. so the question of realtion between physiological affect and code had me thinking about biofeedback treatments. Kym: So im wondering if the relation you have to discomfort for example includes scepticism about the way you have coded the pi. And what is the movement between physiological affect and code, when a lot of that is under your control seemingly. whoa - this is great! what comes to mind - the scepticism people feel towards their readings (i feel fine but my monitor says i'm not) is reduced because of a sort of collective trust -- in that there's a whole group of people working on this code with me and that engagement builds trust in what your monitor tells you (don't know if this is the same thing as emotional contagion?)I dont know if you've come across this kind of explanation in your research karisa?i'm also thinking that people photograph their led screens to show off when they've achieved flatline - which is, for glucose levels, a sign of control - things in balance. i wonder if there's any kind of correlation to biofeedback treatments? What is biofeedback treatment? it's defined as: a process whereby electronic monitoring of a normally automatic bodily function is used to train someone to acquire voluntary
 control of that function. https://youtu.be/H276cfkL5Lomostly used for migrains and brain studies but i also know that Mark Rothko's doctor was interested in biofeedback for anxiety and had an early wearable that was marketed as a biofeedback device for stress-- basically a mood ring https://www.futurehealth.org/Products/-by-Futurehealth-080602-21.html
or its the equivalent of a good holiday photo on instagram. 'I'm fine! yeah - and 'those instagram pics where it's a still life "chicken and waffles with artificial pancreas" - showing off that they can eat glucose free foods on the go 

>>emotional contagion -i dont' know anything about this concept
(sorry distractions/talking and getting back here)no worries - is this easier than skye? i'm happy to be involved however - hope i'm not meddling!
no this is great - not meddling at all! very helpful, and we wana be in conversation. I dont know if skype is good at the moment, we are trying to work out a body workshop ; ) nice


we are again trying to work out why makers would want FDA approvalperhaps it has to do with their "we are not waiting" motto. they are frustrated with the slow pace of things coming to market. openaps started in 2015 - so they say the tech ability has been there since then but it's still not something your doctor can prescribe - you have to build it yourself. and so getting involved with the fda was first mentioned to me as an academic exercise that might also cut back on the years of studies it takes to get a tech improvement widely available. so it's couched in terms of accessibility but with this kind of caveat that there would have to be a fire wall btw the makers and the fda. they presuppose that this is a "greater good" but i think it opens the door to all kinds of - ugh

scale = value? the more people use, the more valuable it is?
that makers dont all have the same ethical concerns - innovation ethics are not the same as free software ethicsthat's an important distinction!
naievety of free software/open hardware & agency that you get from building the rig, closes the eyes to the systemic power relation, you are a success story in a micro niche?

Karisa i wonder if there is somethign interesting in terms of crip time or techno-criptime?? 
so interested in this. crip/sick time as anti-capitalism -  did you just make up techno-criptime??? ja. sweet. 

Notes on crip time:
http://www.annemcdonaldcentre.org.au/crip-time
Cyborg Crip Theory:
http://www.iupress.indiana.edu/product_info.php?products_id=806824
Notes from Taranhe Fazeli:
    "Crip time refers to the temporality of non-normative embodiments, from the day-to-day negotiations of moving from one space to another to the long view of historical time that has historically written disabled people out of the future (e.g. sterilization campaigns and institutionalization). Crip time is shaped by dependency. Although the pain and social stigma felt by those whose material realities are marked by particular forms of difference must be recognized—i.e. swimming upstream with a physical impairment or illness sure isn’t fun—this state does offer chronopolitical resistance to calls for normalization. Sick Timefocuses both on this temporal state and others that are marked by structural processes of exclusion—as regulation and governance of the body is entangled with race, class, religion, and sexuality, crip time must also be thought alongside considerations of time from feminist, queer, postcolonial, and black radical theories."

 tech deceleration? 
well they seems to be accelerating perhaps? totally - but we could introduce a deceleration? the time it takes to lobby is greater than the itme it takes to build a PI

we are making a mind-game, if act up members would have been fighting for diabetic rights/pharma attention,...
fight 1: they would have lobbied for cheaper insulin (and cgms, pumps - cause you can still die in your sleep without constant monitoring, etc.)
fight 2: they would start producing their own insulin supply? http://www.popsci.com/science/article/2010-02/first-pigs-then-bacteria-now-insulin-flowers

Title of a performance
From Tamagochi to CGM
yes! https://www.instagram.com/p/BEyqN8XMoKM/?taken-by=kdisimone
Shes got actually a real good instagrm feed I like this one
https://www.instagram.com/p/BBC-jyXy7pt/?taken-by=diabetic.anna

not me

Yes, but Do You Know?

Explain to a kid what is a cibernetic loop


wondering about taking these issues into different context:

    what is glucose/insulin for a server?
    what if open aps members/act up and relearn were in the same room?
    what are the languages of care that we can use? Like technological languages of care....

    ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
    DAY 4
    Overnight mail from Karisa on yesterday's pad-antics:

    if any of this is helpful or can be untangled into something i've just written some reflections for you to do whatever - -

I get that OpenAPS is too specific/distant and delicate to critique. So there are two questions from Day 3 I thought were interesting and can be explored in a broader context of digital collective care: 

1.What is the movement between physiological affect and code, when a lot of the tech is within your control?
2. What would techno-criptime be?

How I interpret the first question is based on my understanding of quantified selfers and makers’ digital health interventions. And that understanding is their work is towards optimizing health outcomes through automated technology. Meaning you can “tune out” your monitoring devices because they are working “properly” i.e. without effort/thought — like “healthy” organs do. You don’t usually need to think about breathing, circulating blood, etc. in order for them to happen. But what if a maker’s effort to read the data and alter actions based on that monitoring is actually mentally training the patient/maker’s physiology? So you’re not tuning out but actually tuned in? Like what if OpenAPS, just as an example, is accidentally a biofeedback treatment? What if spending so much time with granular electronic monitoring information allows the maker/patient to acquire some measure of voluntary control over the automatic bodily function that they are monitoring? I don’t know if this has been explored but — Can we find software we can use and experiment on ourselves? The inquiry seems especially compelling because of the way the brain influences the immune and endocrine function in auto-immune illnesses. So it could have implications for all kinds of disease treatments. I’ve read that auto-immune disease studies are making a biomedical case for connections between thought, emotion, and physiological health that surpass existing understandings in the mental illness paradigm.

The second question might allow us to think about an altered temporality that decelerates productivity or finds agency in dependency. It ties to my understanding of sick bodies having a potential anti-capitalist power (1. refusing to work or decreasing human capital 2. exposing something about society’s wellbeing: environmental, political, etc.). Makes me think about the ways techno cripts devalue or invalidate biodata + health monitoring, or make their access needs understood/met. Could we investigate floss built by/for visual or audio impairment?
It feels that this is a good way of engaging back with context which to me is a way to answer transhumanist discourse.

The third is something i’m just still stuck on from an earlier conversation on the pad… a reparative critique of collective care clouds. In “Cloudy Logic” Robin James compare today’s neoliberal obsession with big data to past faith in astrology saying “Now the secret to our identity and our future happiness and success lies not in the stars but in the cloud.” I’d suggest that reading health stats and star charts go together, in combination with other forms of measure and ways of knowing — because all information systems are biased and incomplete.The danger inherent in any soft/hardware made by/for patients is that it isolates the individual. For it’s in collective practice that care circulates, knowledge is made reciprocal, and power is re-channeled. Are there data sets that could be analyzed through conflicting paradigms?

http://symptoms.webmd.com/#introView

change point of observation : moon calendar instead of gregorian calendar ?
what would a holistic approach be online?

we are studying online communities  - none of us are part of one wholly, we prefer ril communities

-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

A SUMMARY

CCTF

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 they 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 through the week, as small breaks

We only considered part 1. 

Why? 

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 – 

Quantification of 
Body 
Pain 
Self

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 took 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) 
disabled access
Signing / alternative ways of reading and listening
*



A poem 
that
You should really be thinking about like a script 
The healthcare actor
It enters the room and then
Cohesion and contagion 
But
What kind of attitude should you have?
You are not here when I need you
Sitting on the outside
joy is
Observed
through the displays
that are Smiling 
What are you doing behind
the
Screens?

The predetermined limits 
Stretched in misinterpretation and entanglement of 
Wires interlocked and heads down
to
Restart and push
While

Implicit over explicit
Defines Commitment
How do you prefer to be addressed?