Session Proposal: How to build a social movement for care in the 21st century?

How to build a social movement for care in the 21st century?

This is the kind of title a social scientist comes up with, and to no surprise social science is what we do. We-- Gabriela A. Sanchez and Dana Mahr from the University of Geneva (https://twitter.com/citizensciences)–want to propose a session where we contextualize socially and historically how civil society has intervened and impacted biomedical knowledge and health care in Western societies. Cases such as the Women’s Health Movement in the 1970s, the Deaf Culture Movement, the Anti-vaccination Movement, and the Pro-anorexia Movement. These explorations helps us understand how social movements can challenge and alter the ways we provide definitions (scientifically and culturally) for things like expertise, health, disease, bodies, and care. The purpose of this reflection is to situate Health Social Movements (HSM) in 2017 and to sketch some of the potentials and pitfalls they face with current social and technological trends like: Big data driven medicine and care, the automatization of health care work, scientific citizenship, the re-emerging discourse of empowerment and participation, the right (or duty) to make individual lifestyle/medical choices, the growing medicalization of many aspects of modern life and its oppositional (but somehow complementary) trend of dissenting established medical practices (like vaccines and pharmaceuticals).

Against the background of these contemporary developments we want to discuss how OpenCare and the themes we discussed during the #openvillage gathering could be positioned in the continuous effort of HSM to alter both, the public discourse about care and its policies. We want to open up the debate with questions like: Why do we believe open science and citizen science are helpful in health care? Is participation, openness and choice inherently good? How do we envision shifting dynamics of power between physicians, care-givers, and (informed) patients? Who do they empower?

Format of Session

We propose to do a 15 min presentation introducing the session, present basic social concepts and analyze selected examples of HSMs to open a 45 min discussion about possible (un)foreseen failures of contemporary HSMs in creating an inclusive, participatory, individualized, and caring health care movement/infrastructure and develop strategies to properly address them. We believe participants in this session will gain valuable insights into how social movements work by changing the discourse, practice or policies in health care and effect real change. We hope this discussion will also raise new questions and concerns, as well as deep reflexivity of the roles and responsibilities we hold as activists, developers, patients, family caregivers, health-care professionals, policy-makers, etc.

Thematic hashtags

health social movements :small_blue_diamond: (de)medicalization :small_blue_diamond: normalization of bodies and minds :small_blue_diamond: pseudo-medicine :small_blue_diamond: the ethico-politics of care :small_blue_diamond: othering :small_blue_diamond: intersectionality :small_blue_diamond: partaking vs dissent vs alternatives :small_blue_diamond: illness as a culture :small_blue_diamond: health as a lifestyle

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Hey thanks for the proposal! These ideas sound amazing and definitely asking similar questions to what we hope to cultivate at the festival. We’ve had a bunch of great proposals and will be looking through them all in the next weeks to come up with a finalized program. Be well and hope we get to meet in Brussels!

So welcome, @sabgaby! I would be interested in taking part. I have nothing much to offer, except that I know OpenCare data reasonably well. But I am curious of exploring the border zone where science meets democracy. So, bring it on. I will sit with you, and learn.

That is great! Looking forward for the event! We are really excited and hope we can have an interesting and creative session!

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Nice to meet you and welcome from me too, @sabgaby!
I was talking to a health clinician earlier today and they were asking a similar question as I was telling them about the festival and how much community members in edgeryders look in the way of solutions provided by the citizenry - for better health and care (infra)structures, to put it simple.

She was asking something similar to your question: “Is participation, openness and choice inherently good?”, the case being the advances and limits of the sequencing of DNA. For example how sometimes patients refuse to know if they have a mutation because the treatments are not available and dangerous to follow based on unconclusive research - so a case where knowledge and openness about medical science can have adverse effects.

Not sure if this helps, but do you have other examples?

Other than that, of course you’re welcome to the festival, with or without a formal session. You’ll be getting regular updates about the venue and things we need help with from @natalia_skoczylas… as we draw closer to the date there’s many things everyone can help with! I also see from twitter that you’re in touch with @lucy at citizen science network, @rachel at hackuarium etc. Small world :slight_smile:

Happy to see you here @sabgaby! Looking forward to meeting you again in Brussels.

The ideas you wrote already resonate with others here, so surely thought-provoking conversations will follow in October, much akin to the ones started in Geneva in May! :slight_smile:

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@sabgaby Thanks for this proposal! We weren’t able to include it on the formal presentation, but as you can see from the Final Program, there will still be time/space for these presentations. So we hope that you can still come and share your thoughts with the community! Looking forward to meeting!

p.s. @aquamammal @liz_biospherex, your work is very similar to these topics! Check out the posts they made about Reproductive Sovereignty and The Dunbar Number.

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Yeah, so relevant, got to do a double take at our assumptions sooner rather than later.

The topic is so expansive, looking forward to your session. At the moment, because I’m going through a lot of Dunbar and social network theory in my research, I’m getting meta-feels while using the Edgeryders forum, power rules of participation and hyper sensitivity to “meaningful connections”…

Sorry for my absence on this post, I was on holidays and just returned.

@woodbinehealth: Too bad we couldn’t make it to the program, but from the looks of the final program you had great proposals and I am looking forward to the event. I will be joining and my fellow colleague Dana is figuring out her schedule. I just have one question. Should we still prepare a session?

@aquamammal: I am sooo excited for all the interesting conversations and discussions we will be having! Looking forward to meeting you all!

@sabgaby Thanks for the reply! Looking forward to meeting! There will be informal time for small scale presentations/discussions, so I would definitely prepare something if you feel like you would like to host a small group about the topic. They’ll be on day 2/3 for about 1-1hr 15mins. See you!