Chaos/Order -- DIY/Institutions

There is an excellent discussion taking place in the Architectures of Love topic with response and graphic provided by @Gehan and graphic that triggers a thought I have been wrestling with for some time about the relationship of the more chaotic DIY world and the structure and conservative nature of institutions, especially as it relates to care in general and health care specifically.

Because the two need each other.  And this, as I see it, is one basis of Edgeryders itself. It could be that increasingly these two poles of human endeavor recognize this fact. At least I hope they do.

OpenCare is built on this premise and so is our MENA YP project. It seems that for years institutions did not recognize serious dependence on the fact that @Alberto describes as “the R&D of society happens at the edges.” But the world is so messed up now and in danger of cooking us all alive while religious militants bomb and shoot each other producing millions of refugees, that such august institutions as the EU and the World Bank admit that they don’t have all the answers and maybe the search for solutions has to include looking into and working with people and activities that they may have once disdained.

And on the other side, fringy people can go along quite merrily without interacting with big institutions.  Until they need those resources and services.

This was my experience living in a large intentional community that was amazingly self-sufficient most all of the time, except when it wasn’t. And in the cases where it wasn’t, the need for institutional support was critical to survival itself.

This included everyday stuff like driving on paved roads and even driving at all. For example, cars are not DIY. But where this showed up most critically was in health care.

We at The Farm became famous for midwifery and home birth. Three of my own kids were born at home with Farm midwives - one at the Farm in rural Tennessee and two in big cities. And in each case all went fine. No outside help needed.

But others were not so lucky. Sometimes a child is born with a life-threatening defect. And indeed this happened more than a few times. In those cases one’s pride in going all-DIY went right out the window and the fastest trip possible to the best hospital around was the difference between life and death.

Another time, one of our men was harvesting crops with a thresher/combine and he stuck his long-haired head into the wrong space and the machine ripped his entire scalp off of his head in a matter of seconds. His life was saved only by spending a lot of time at the best intensive care unit in the region. Not long after, another guy was doing tree trimming and he fall out of a tree and would surely have died without the same amount of care. It must be noted that the bills for these and other incidents were so high that they contributed mightily to our overall debt load. We had no medical insurance and I doubt that a policy could have even been obtained for such a large group. (And this of course is in the USA where enough people think “freedom” is partly defined by making sure that there is no universal coverage. This debate of course rages on to this day.)

So whereas we did most everything for ourselves - we never needed tow trucks to get a vehicle unstuck from the mud because there were always enough people around to push it out - at times we relied on the institutions of the “straight world” to bail us out of the worst predicaments.

And I suspect that people in those institutions smugly thought that we hippies lived in some sort of dream world where we could make our alternative life without needing help from the other side.

Certainly in the computer world, large corporations like IBM and HP saw no need at all for a “personal” computer, as one example.

Anyone who thought that misunderstood us. We never set out to dismantle or abandon large institutions. Rather, we wanted them to be there to serve actual needs when they arise but not to waste resources on situations where people could do something for themselves. We saw a kind of harmony possible between the two.

But that harmony can’t happen unless those institutions recognize their need for creative thinking and doing from those parts of society that walk a different path than their own.

Here when we talk about Open Care, refugee care, new ways of providing care, open source medicine (like Open Insulin) and the rest, I see it as similar.

It isn’t one against the other.  It is that each needs the other.

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Different tools for different jobs

Thanks for this post @johncoate,

It reminds me of my own struggle to have my three kids at home.

It also connects very much with Ivan Illich’s Tools for Conviviality which has been a massive influence on me. For those who might be reading this that haven’t read it - its very relevant to OpenCare. He starts out by describing two watersheds in modern times. The first in 1913 when Western medicine reached a point where a patient had a better than 50-50 chance that trained doctors would provide better treatment than anyone else. When precisely the second watershed took place is harder to determine but its the point at which the institutions of modern industrial society started to no longer serve their over-riding purpose and peversely humanity starts to serve the institution. He saw this pattern particularly in the institutions of modern medicine but in all other professions.

“I believe that society must be reconstructed to enlarge the contribution of autonomous individuals and primary groups to the total effectiveness of a new system of production designed to satisfy the human needs which it also determines. In fact, the institutions of industrial society do just the opposite.”

So it’s a bit like the examples you’ve shared - and as every craftsperson knows, you need different tools for different jobs. And I think where the chaordic path is helpful is that we also need different spaces/practices for different purposes.

Sign posting and escalation

From our expereince, we needed to be sure of what we could and couldn’t do and where to specialise.

Signposting relates to sending people to more apprioate services.

Escalation is about when situations are bigger than we can deal with and when to call for help.

Useful assessments of state services and how to form good relationships with other service providers are key.

This is a learningcurve.

We are very limited but can make useful contributions.

Getting others to make better use of existing services gives us better focus but also means that needs can be best met.

This is super general as how to do it is very site specific.

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Aim for manipulation

Thanks for the experiences.  Terrifying to say the least, but good examples of how we are thinking about health autonomy.  Within Woodbine and what we hope to see in the larger conversation around the “Living Communism, spreading anarchy” theme is a recognition of our dependence on institutions.  I think holistic medicines and yoga and meditation are amazing tools that we must grow and learn from.  But as we always say, if I break my arm, I’m not looking to reiki.  And especially through my job as an ER doc, Im trained and beholden (monetarily and functionally) to these institutions.  In this transition period, I do think we need to recognize the role of these institutions and utilize them.  But I would disagree with the end of your thoughts.  One thing I have seen through my experiences in medicine is that these institutions are not neutral entities.  For example, in the cases you described above, the modern ICU care here in the US is utterly life-saving.  But the costs of that care is entirely externalized.  From an environmental standpoint, the amount of waste to sterlize things, create medications, and treat is fundamentally based upon a destructive model.  In addition, the economic supply chains dictate that the costs of production and destruction are borne by poorer countries and individuals (toxic waste dumps, environmental racism, people needing to clean, people stuck in dead end jobs creating sterilized instruments).  Lastly, the hospitals themselves are now these “non-profit” corporations, where the medical community is fully attached and perpetuates the upper middle class/elite class lifestyle (i.e. in the “watershed” moments mentioned above, the doctor used to be a member of the community.  Now the doctor is a country club member), and so the motivations for the hospital is revenue.  I bring these up not to critique the use of these institutions.  But as we’re seeing in Hamburg now, inevitably to live the “communism” we want, we will have to partake in the destruction of these systems.  I think that is a lesson we can take from the “back to land” movements of the 70’s here in the US.  It is not enough to have the positivity of communal life or autonomy.  There must be the negativity, the destruction of these systems that want to destroy us (if in doubt, think about the fact that dioxin, which is the most toxic substance created, which is produced from the destruction of plastic, and then think about how much plastic is thrown out in hospitals, and then think that that substance is not found in almost all breast milk, it touches on the idea that modern industrial capitalism wants to destroy us).  Some would argue that this is dark, but the world is dark.  We must acknowledge that.  What I think our mission and the ideas we would like to highlight, is how can we create projects that are motivated by creation, but utilize the destruction.  I think a more strategic aim is to think of how to manipulate these institutions.  How can we make it those that the ICU serves the commons, not us serving the ICU.

Looking forward to the thoughts and conversations!

No disagreement from me

about the problems you describe regarding those institutions.  They are deeply flawed and in the senses you describe are part of The Problem.  But in order to have an ICU at all requires a lot of infrstructure even just in creating ther parts that assemble to make it.

Wonderfully concrete

I love @johncoate 's post because they are so well grounded in concreteness and experience. This helps design initiatives here and now, independent when possible, reliant when needed.

It is also tempting to engage with @Woodbinehealth on his own thinking, more systemic and incredibly valuable. Francis, I wonder: what you have in mind as a solution to the “environmental impact of sterilization” issue?

Unknown

@Alberto, @johncoate thanks for the comments and questions.  I definitely don’t have an answer to either question about how to maintain systems without the external costs, but I think this comes to highlight the larger question of “what is health autonomy”.  From a US perspective, to have access to an ICU means you must maintain some type of job that offers access to health insurance or you have rights as a citizen.  But for the undocumented or vagrant or those who live on the edges of society, ICU’s can often seem inaccessible.  So do we want ICU’s to exist for everyone or just those of us who are citizens, or just those of us who have resources.  In the US, there are legal mandates for critical care in emergencies regardless of payment, but ask the millions who are in bankruptcy after “emergency treatment” what their thoughts are.  In regards to the sterilization, I think that there could be some type of Open Science method of doing that, but it begs the larger question of why.  I think a lot of health autonomy for us will be avoiding ICU’s, to keep them at a minimum.  A lot of this comes from a US perspective where there is almost no focus on preventative care and more focus on intensive type care.  Both great comments and I look forward to diving into this question of what would a truly health autonomous society look like!

I agree about prevention

and it has seemed to me for a long time that one of the big items that seems non-negotiable is the burden that tobacco users and obesity places on the system as a whole and how many health resources go to dealing with problems that arise directly from that.  Even in today’s raging health care debates, I don’t see any suggestion that if you choose to smoke cigarettes you will have a cost burden greater than someone who doesn’t.

Healthy people subsidize unhealthy people in large actuarial pools, and the only way the affordable Care Act can work (or any European system too) is if the pool is large enough to contain everyone.  But it still make no distinctions between those who make burdensome and unhealthy lifestyle choices and those who don’t.  I do understand though that this is a pretty slippery slope.  Who decides?

I myself last year had to have more than $150K worth of cancer treatments, which at this point seem to have worked.  But you can be sure that I have aggressively pursued diet and lifestyle changes that improve my chances.  Not that I had an unhealthy lifestyle before - I already did most of the right things.  But it does put the Fear of God into you.  What would be great is if we collectively made such decisions in advance of needing them so acutely.

ICUs?

Sorry, I don’t know what that means. American acronym?

ICU = Intensive Care Unit

is what it means

Hi, @johncoate, I definitely agree that there are practices that place people in unhealthy situations. Its a complicated debate, as all things, because on the one hand there is the individual “choice” to smoke or eat unhealthy food. But then there is the social pressures to engage in those practices because they are productive in a short term economic sense to the corporations. The advertising and marketing of “unhealthy” products is utterly immoral (if you have any doubt, not that I think you do, but an interesting practice is to watch 30mins of kids cartoons. The ads are exclusively for high sugar foods, the volume goes up in the commercials, and the marketing idea is that kids are more susceptible to marketing and they will put pressure on the parents. Sick.) There is also the class aspect of “choice”, in that a busy mom working 3 jobs may not have the resources or time to prepare “healthy” food, the existence of “food deserts” in poor communities, and the inability to exercise. Looking at smoking, they have spent billions of dollars over the last decades to push smoking as a relaxation tool, so can we really blame people for using as such and then getting addicted? So my question is always, how can we address the individual without applying a sense of blame for their “choice” (not that I think you are doing that, but definitely what happens in our culture). Today we’re hosting the first in a four part series around “nourishment”(https://www.facebook.com/events/132077927387445/?acontext={“ref”%3A"4"%2C"feed_story_type"%3A"370"%2C"action_history"%3A"null"})" to try to address these issues. Next will be “fitness” and so on, moving through the basics of health. Should be an interesting conversation!

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If you guys can help your community fix nourishment and fitness, that’s a huge impact. I will be following this.

So will I. And you are right - there is a kind of chicken/egg aspect to all this. An individual’s problem or a larger social issue - and it is both of course.