Notes from community call on emotional health and possibly inappropropriate conversation

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#1

From http://rubyetc.tumblr.com/tagged/mh (ht Pauline) 

First thing that happens during our first ever community meeting online is that the technology doesn’t work. What follows is a hilarious 1.5 hr conversation conducted via a combination of voice, sign language, lip reading and chat.

We were joined by @Pauline and @Omri_Kaufmann from UDK Berlin, @Costantino  and @ChiaraFrr in Milano, @Nadia and a new community member - Christina whose mission with The Meraki People is to restore and preserve the cultural heritage of mount Parnonas in Greece by turning it into a green production and cultural oasis.

In our intros we discovered most of us approach mental wellbeing in terms of how to make support more accessible - by inventoring and designing solutions, by opening up a conversation. I saw two big strands in the conversation that can inform our search:

A. Is it safer for an online conversation to only deal with the soft side of mental health? That is, exclude suicide and death? 

Noemi mentioned how deep suicide is in Ireland both among males and females, as well as it is underreported - it’s not even ranking top in Europe (like former Soviet countries). Pauline added that in Sweden, suicide is the most common cause of death in people between 18-35. Costantino said this was dangerous to approach in OpenCare, even though we know it’s increasingly being flagged in the tech activist sector (see re:Publica session Hacking with Care).

Team JUS was on board! They’re working on design that explores vulnerability: We want to research objects that people are handling or certain gestures they are doing while in therapy. Can we find a certain patterns in these behaviours or interactions? Maybe we can do something with it? We found in the interviews/chats we started with our peers as well that it was very difficult for them to open up. We also had some observations how to create a sharing environment

Their design will most probably involve

  1. Human connection - "if you just throw your thoughts in the air without any feedback it is less interesting than if you are sharing with people with whom you have an intimate relationship" (Nadia).
  2. Some external tokens to facilitate this, like objects (bridging connection between repetitive gestures and calming yourself down); maybe space (pop-up confession booths).

B. Or should we really push ourselves over the edge and experiment? Is there relief in black humor?

This can be simply by asking people on the streets How are you? and then “Really, how are you?”. More advanced versions include drawing inspiration from funeral traditions involving celebrations of sorts thru drinks, food, but also social grieving (Eastern Europe, Jewish culture, Italy, Germany were mentioned).  … for the rest I will have to let the notes speak as I won’t do them justice)

N: How would you design for maximum inappropriateness. What are the most inappropriate jokes you can make in a situation where someone is in pain? How do you piss people off at a Jewish funeral? How to make the grieving person forget about their sorrow and want to kill you instead?

N: Because there is some relief in black humour.

P: i love it. dealing with depression through humor and showing your feelings

O: How do we choose who to talk to?

P:‘survivors’?

O: I would talk to someone who had a similar experience and can connect with me and understand me.

N: Anonymous emotionalists. “let the crazy out in small pieces- not all at once”. XYKD did a fantastic comic on depression https://www.reddit.com/r/depression/comments/14txdv/xkcd_honest/

O: 1 I would also talk to someone i know very little or not at all

Ne: +1

“What made you understand that you were depressed”?

N: My partner said I should probably take a shower.

P: but that’s important too! finding the right kind of treatment; therapy varies alot depending on the person too, the treatment guy

N: Inability to take any decisions. Decision to not go to shrink. Just getting stuck.

P: the scale of our project is probably much smaller than the whole conversation you are interested in having on Edgeryders right?

P: dark horse is there also

C: this track to do with emotions and mind etc can be a long term track within opencare;

Imperfect, super unreliable tools and unsuitable places to kill yourself.

Placebo pills

Homeopathic poison pill

Please join our growing group and help build a sensible brief around emotional wellbeing here.


We Must Clown
#2

Reddit conversation: “Check in: How are you this week?”

For inspiration check the brief here on the right: https://www.reddit.com/r/depression/comments/4j46cz/weekly_check_in_how_are_you_this_week/

I especially liked this:

Our focus is on support rather than “fixes”. If you are looking for a more solution-oriented community, check out/r/getting_over_it/ or /r/GetMotivatedor

Do not post or respond with:

  • "Tough love" of any description.
  • General uplifting or "it gets better" messages. Encouragement is not helpful unless it integrates real, personal understanding of the OP's feelings and situation.
  • Anything explicit or inciting related to suicide or self harm.
  • Claims about the efficacy of any treatment or self-help strategy including religion.

Thinking about our OpenCare brief in the making, or Pauline & Omri’s project design: we need to signal the rules of the space somehow in order to build trust that the person sharing is in the right space: if it’s for peer support vs if it’s a project/solution space etc.


#3

Support rather than “fixes”

And here it is. This rings very true. No one can “fix” anyone else (unless in emergency surgery, probably). But humans excel at support, when we can be bothered!


#4

Really interested in this topic

Ever since the election in the UK I’ve been doing a lot of vox pop on the streets (Liverpool, Paris, Brighton) and listening to people around the question of what do you long for in the place where you live? I’ve been trying out different ways of leading people towards this question, either through asking about their dreamlife or asking them to imagine themeselves into a future they would like to live in. Through these talks it came up again and again that a lot of people really were living through enormously challenging situations and traumas and very willing to normalise it in conversation and shrug it off. Listening to people simply as humans without any judgements around what kind of state they were in (eg. seeing all the people I met simply as humans experiencing the world, rather than classifying some as experiencing states that were “abnormal” or could be classed as “mentally ill”) felt like a helpful thing - the urge to have one’s experience understood unites everyone. I was thinking about networks that could help this (and thinking around digital networks - Airbnb / dating apps etc. and looked at some mental health apps ) I was mostly thinking about place and the fact that it is true of all places that there would be really wretched experiences in need of processing and how this reality is something that needed stepping up to.  I don’t know of many political utopias that really take into account neurodiversity and conditions like dementia.

This perspective is drawn from my experience of talking to a multitude of strangers these last few months and I realise there are many many issues when it comes to mental health. But I’ll share my naive view as I’ve been considering the role that I’d taken up in wandering about listening to whoever wanted or needed to talk and about the emotional healing of groups of people and how we so inadequately meet that in product driven cultures. The experience left me thinking that peer support was exactly what was needed by a lot of people. Psychologists are too expensive for most and online tick boxes are not at all like being listened to or sharing experience. There is something in spoken expression, being listened to and accepted that is just vital for emotional processing. With a few technologists I prototyped some systems that used voice recordings to play back these “real” expressions to others. Again the emphasis was not on mental illness but on the similarities and the differences in the longings of the inhabitants of particular locations - the project was inspired by thinking about how it might be possible to make networks in Nepal that in some way help the expression and social processing of the shock around the earthquake. However, there had been a depth in the experience of the interchanges that had happened whilst making the recordings that were more interesting than the voice playback system. The interviews always came out of a “live” sharing of experience (ie. the interviewee’s expeirences and my own) and involved risk, personal disclosure, agency and shared discovery in a way that listening to a recording does not. I am still wondering about digital systems that allow people to talk directly to each other in a structured way that could help them process their emotional situations. And I considered the various kinds of conversations people might want - just to speak or perhaps a more formal recorded conversation that involved making a commitment. Witnessed formal statements - like rituals - can create marker points in people’s lives. Alchoholic’s anonymous is probably a relevant example. I wondered about the Samaritans model which sets up this sense that you can make a telephone call if you are desperate and the “Samaritan” is steady, sane and absolutely OK. I wonder about a network that simply says: whatever you are going through is part of the human experience ie. there is no broken experience, but there certainly is incredibly challenging experience.

It feels like a given that two people who are in grief may find solace in sharing their real experience and connecting.  And yet, to generalise, Western communities often put empahsis on usefulness in society and direct those exhibiting signs of mental distress to simply “be OK” / go on medication / fix themeselves -  I totally agree with the point you are bringing out that “the community” is often woefully dysfunctional at supporting or accepting unusual emotional situations. I wonder about a network that links people as humans wanting to share something specific in a particular area of the world - so the region is the unifier, not the emotional suffering. Perhaps I’m thinking of a more generalised target audience than you are considering but my sense is after walking Liverpool, that everyone who lives in a distributed area is in someway involved in processing the emotions experienced in that place. I’m aware this is a poetic notion but I think various imaginative re-framings of the issue of mental health is what’s needed. Maybe this would only work as a three way conversation with someone trained and with really clear guidelines around use but my thinking here is that what’s needed is not this expert / patient relationship but two humans sharing different experiences of living in a similar place.

My friend Denis Ngala at TICAH, the Trust for Indigenous Culture and Health, an organisation in Kenya that works in linking health and cultural knowledge was telling me about the work that was being done in Kenya around victims of torture and reintegrating them back into society after they had given freedom again. The emphasis he was communicating was that recovery was not the problem of the victim of torture alone, but that it was the community’s task. They were working to educate the community around how to support the individual live beyond what they had lived through.

Real-life conversations from real experience in which neither party is an expert can be life changing. I work a lot with VR and seeing through another’s eyes is certainly helpful but what really leads to change is honestly communicating difficult experience and listening to others and accepting their experience. There’s some sort of validation in the honesty of that process that allows for shifts. There are lots of CBT, brain training, “look at things brighter” apps around but perhaps there’s room for bold digital networks - with some serious legal tick boxes in place - that make possible structured honest relational experiences between people in a particular place. It feels like using the digital to practice honestly speaking and speaking in one’s own name rather than anonymously would be helpful at this point. The histories of Snapchat et al. show the many superficial ways that communication can go, but there’s a saviness emerging around structuring and limiting online encounter and creating a precise invitation that makes me think it’s possible. Online experiences that move into relational and creative territory and away from the sense that mental difficulties have to be born alone like a scapegoat in the desert or solved once and for all like winning in a game - there’s something about the unique experience of another person that is a random element that can startle out of insularity. An app for conversation for people in a particular country? A way of marking personal commitments to the self and receiving some real social validation for it? A whole raft of comedy solutions that normalise being in dire straights and make it feel like it’s worth making the epic journey back to life? Not sure, but you’re right that there is a real need for help with processing emotions and it’s something that a healthy culture should be able to give.


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#5

I barely grasp it…

Well met again, @kate_g! This is a hell of a comeback.

There seems to be a deep intuition here. “Something about the experience of another person…” this is how we learn everything in Edgeryders, we discourage vouching opinions and encourage sharing stories (preferably one’s own) because they are so much thicker and richer. This is across the board, not just around mental health – in fact we had not gone into discussing mental health so far, not really.

What I don’t understand is: are you thinking around some online space for this?

Wait, what? Nepal? Now that’s a coincidence :slight_smile:


#6

I don’t know - I’m open - I was interested in this topic wanted to put down some thoughts.

Instinctively I’m drawn to systems that allow people to vocalise, listen and be listened to in a particular place. Perhaps the digital simply helps to organise something which is then a “live” experience. There’s a long history of formal conversations as playing a vital part in processing atrocities - I will not write another long mail of examples! - but it made me wonder if that kind of designed experience (sharing experience, care, validation, human dignity) can be made into a more generic invitation.

There’s something in the idea about spending distinct and limited periods of time in group processes around emotional processing and communication. Feels like that is useful to all as you say - an often over-looked necessary act of hygiene perhaps. Particularly important for those trying to work and live in different ways - living on the edge takes some real practical and emotional resilience, as edgeryders articulates so well.

When it comes to practical implementation, I’m setting up an experiment in Brighton for September around place and sharing experience & looking out for volunteer opportunities in psychotherapy group work. Just starting up a collab working with the Uni of Geneva Center for Affective Sciences on touch and emotions - though that’s not focussing on emotion processing from a cultural perspective, which is what grabbed me about the initiative above.

A slow burner - personally, I need to gain some more active experience to be really useful on this - and very happy to follow this discussion & input if relevant.

& the Nepal connection… Worked on a small project in Liverpool after the Nepal earthquake, a Nepalese hornbill audio sculpture that explored how network technology could make audible the word on the street & the dreams people were having http://byzantium.chroma.space/about/  Was designed to be developed for Nepal, but it was vandalised so back to the drawing board with it… hope it will come through in time. Simple experience gained in the process of making the work around the dramatic power of shared expression for processing trauma & that network tech makes possible new ways of facilitating this. All sorts of problems around crowd sourcing psychotherapy - equal relations and shared experience feels like a stronger emphasis: designing systems for “live”, sincere, courageous conversations which puts some trust back in the (extended) neighbourhood as equipped to hold together around the varieties of experiences endured on this earth.


#7

Ok…

Ok, so here’s the intuition I see in your comment, @kate_g.

  • Take an online community with a commitment to constructive interaction – one with quite strong community management. 
  • It is not so far from a support structure based on human-to-human listening. You could probably hack your way from healthy community to support structure.

Is that it? If so, it is quite actionable, therefore powerful.


#8

Did this fall through the cracks?

@kate_g I made a mistake in mentioning you, so that the platform did not send you the notification. I was wondering if you had the time to consider my tentative summary above… Thanks!


#9

Slow burning too. How else re: emotional health?

Yours is already a very useful contribution @kate_g, thanks so much. It signals we’re on a good track - that we need to approach this with care, with focus on peer listening (already a strong point made by the folks cited in the notes above), and with some magic combination between digital and open ended conversations + structured/ generic/ maybe even ritualized format of fostering exchanges.

You mentioned Geneva and therapy work, and reminded me to also include @Kaja in this conversation, who was/is(?) working there and looking into alternative therapy practice… Kaja, curious if you have tried anything around group work? Or do you have any insights about ways in which communities trying to help themselves and members become more emotionally resilient can borrow things that work in the professional practice?  No need to reinvent wheels if there’s good stuff already there.


#10

“that everyone who lives in a distributed area is in someway involved in processing the emotions experienced in that place”

Beautiful idea, it feels too beautiful to not be true. Like mathematic formulae.


#11

Questions

If you Google “mental health support group” and add Liverpool, London, Brighton, Brussels or just about any other location in the EU, you get a lot of links to groups already actively doing what is being described here (from what I gather, could be I’m missing something).  If you add “online” to that you still get relevant results, though far fewer.

My question then is, how would what’s being described, or at least hinted at, here be different or perhaps better than what is already going on.  Or, how can the exisiting activity be supplemented or improved?  Or, is the idea to use online communication to reach entirely other people than who uses these existing resources?


#12

I guess

Following @kate_g’s train of thoughts, they exist but they do not listen. They say the wrong things. They try to “fix” people. Is that so, Kate? I have no experience of my own to contribute.

From an OpenCare perspective: they exist. But are they provided by communities to themselves? Or is someone cast as the “solution provider” and someone else as the “vulnerable group in need of help”?


#13

This is more about shared learning imho

This thread is part of an effort of arriving at the right questions to reveal new knowledge: knowledge of approaches, of projects out there, of ways that work and dont in terms of support (more than fixes). If we manage to draw in different people some of whom have experiential knowledge with projects you mention @johncoate, even better. If some of the people joining the conversation are running an initiative and they can improve it on the basis of that new knowledge, even better.

if we, together, decide to take on new avenues as a continuation of the conversation (an OpenCare spinoff?), well that is the most outcome to come out, so who knows…


#14

An example in Armenia

Here’s an example of “community approach” to mental health care in Armenia. It is a tiny drop in the sea but still I am excited to know it exists here, even though it’s rather a “provider vs vulnerable group” approach as  @Alberto put it.

@Noemi