Chronic illness-informed organising is regenerative

This is a transcript of my short talk at the School of System Change’s Constellating Change series, Session 2: Structures and Rhythms, on 15th November 2023. Nati Lombardo of The Hum also did a brilliant talk around team rhythms. There are four more Sessions to come with some fabulous speakers, sign up here.

Big thanks to caitlinconnors, Laura Malan, Fran Cook, Sophie Walker, Gemma Drake and Laura Melissa Williams for being inspiring holiday pals. Thanks also to:

• caitlinconnors for talking me through how Bright Harbour approaches CripWork
• Geeks for Social Change for their blog post about working as a disabled-led company
• Chayn for the brilliantly transparent way they work.

You can read more about regenerative organisational design here, and more about my work with chronic illness and grief through my newsletter GriefSick.

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I’m going to be talking today about what we might be able to learn from how chronically ill people organise in terms of structures and processes. So firstly, a definition to help. “Chronic illness” means a health condition that is long-lasting or permanent. I’ve got ME/CFS which really affects my energy. I work part-time and need to be really careful of my hours and how I’m showing up at work.

I’m not alone. 40% of the UK population has a chronic illness (26 million people) and I’ve been thinking a lot over the past couple of years about the way that chronically ill people live their lives, and how that could be seen as regenerative, or healing, for themselves, for society, possibly even for the planet. And I’m wondering what that looks like in the world of work. I’m going to share three principles and a couple of examples, but I’m going to start with a story from outside of work.

So, I have a group of friends and we’re all sick and disabled. Most of us have fatigue or are neurodivergent. And when we go on holiday, we need to make that holiday work. Things need to be produced to make that holiday function, like a meal that we all need to eat. And there’s just something really beautiful in a group of sick and disabled people, a real easeful emergent way in which tasks get allocated. Somebody else might pick something up because I need to go to bed for two hours. And the way that it’s all produced is really generous and distributed and seamless in a way that honestly I’ve never really seen in work, but I’m fascinated by how it might be recreated.

So I’m going to share a couple of speculative principles and examples now.

Principle 1: Take inspiration from seasons and cycles

We are not the same every day. We are not meant to be. For example, half the population has a menstrual cycle that affects energy levels and mood in four distinct phases across a roughly 28 day cycle. In Northern Europe, where I live, our low-light winters affect energy and mood. Many of us are less “productive” during this time, and that’s a natural phenomenon.

And actually, hardly anything in the more-than-human world stays the same forever. There’s always expansion and contraction, expansion and contraction, growth and death. I see this as being related to the root cause of the burnout and overwhelm culture we have in a lot of the organisations in the West. I see that overwhelm culture having its roots in this need to be the same every time. This addiction, almost, to initiation and starting energy, which assumes that we have infinite capacity and resource and we can continue to grow and grow and grow. And a real fear of the energy of endings. Often, when I work with teams, and they want to start something, I say: “Great, and what are you going to stop? What are you going to kill? What are you going to end to make space for this new thing?” Because we don’t have limitless resource. We can’t keep growing; the planet can’t, and our organisations can’t either.

There’s a really interesting example from Chayn, which is a charity that supports survivors of gender-based violence. They have a Spring Wind Down and a Winter Wind Down every year. They’re based in the Global North, and around the Spring Equinox, which is about March 21st, they have a week of reducing their work and their capacity. They have two weeks in December and a week in January doing the same thing [read more here]. I think that’s a really beautiful example of working with the energy, cycles and seasons of the place that you’re based in.

Principle 2: Adopt “continuous handover” communication

You know how, when you leave a job and you need to do a handover, and you might need to have 10 meetings or write a really long document with: “Here’s a link to this, and don’t forget about this, and here’s what I was thinking about this”?

For me, because of my illness, I might need to not show up to work, sometimes at quite short notice. So I approach every day as a handover day. At the end of every day I am thinking, have I left enough for my teammates if I can’t show up tomorrow? And what this looks like at a team or an organisational level is moving from an oral to a written culture. That doesn’t mean worshiping the written word and having really long documents. It just means leaving enough documented for your teammates to be able to pick up your stuff. That could look like doodles in Miro, voicenotes on WhatsApp, or notes in Trello or Teams. It just means that people can pick up your stuff really easily. And what this tends to do is improve communication across the board. You get fewer meetings and fewer emails.

[Additional principle I didn’t have time to include in the talk: From jobs to roles and tasks]

Another helpful way that chronically ill people organise is to move away from jobs and towards roles and tasks. This means that I don’t have a strict job title, I have a role that might change quite fluidly, and broadly a set of tasks that I’m accountable for. But, as for who delivers those tasks, that might change based on who has capacity and energy that week.

This requires a team structure of flexible generalists who have some specialist skills. Everyone can do roughly 70% of everyone else’s job. If someone is off sick, there are plenty of people who can pick things up. This builds resilience into the team structure. It may not work for every instance, and is certainly a challenge to the specialism-first way of viewing capability and capacity that we’ve seen develop in in the past decade or so. It also may not work so well for teams that are actively developing juniors, who need time and space to practice the deep craft skills that will allow them to become more generalist again as they progress.

This way of working also requires everyone to have an adult-adult relational style, a good sense of their own capacity at any given time. It also requires adopting the stance of “equity not equality”. We’re not keeping track or score of who is doing more or less than their “fair share”. We trust that we’re all in service of the system and that resource (energy) flows where it needs to flow.

Principle 3: Underpinned by trust and radical acceptance

I know we’re talking about structures and processes here today, but I wanted to say upfront that all of this is underpinned by trust and acceptance and care, and that if you don’t have that, then trying to adopt new structures and processes is never really going to work.

This chronically ill way of organizing, with trust and acceptance, shows up in asking, always: “How can we accept each other, radically, as we are today?”

So maybe you’ve come to the meeting with your video off and you’re only writing in the chat, that’s great. Maybe you’re joining the meeting from your yoga mat. Brilliant. Look after yourself. Maybe you’re joining from the bath, with your video off, I hasten to add! That’s welcome too. How can we be more caring of each other? How can we slow down? Is the deadline really the deadline? Can it be moved? What is the urgency here? If I can’t finish something, it’s not seen as dropping the ball, it’s just how we are. And someone else is going to pick that up and it will come back around anyway. I see it as rejecting “all or nothing” or “perfectionist” culture.

Finally, I think chronic illness-informed organizing could potentially be better for everybody because none of us are machines and we are all in body/minds that fluctuate and change. A lot of us have caring responsibilities. We can’t all show up the same every single day in a rigid structure. The same process without fluidity is not going to work for everybody.

I think that chronic illness informed organizing could be regenerative organising, and I believe it could be the kind of organising that we need for a life sustaining society and a life sustaining planet. Thank you.

Interesting bits from the Q&A

Internal permission

Question: If a new person shows up in a team with health needs, how do you support them and that team?

It starts with, can you as an individual give yourself the permission to ask initially for something small? Maybe, can I change my working hours a little bit? Can I do more on these days and less on these days, for example, is it okay if every Tuesday I need to go to an appointment? What are the small ways that you can start to introduce this? That really starts with an internal permission. And I actually think, whether you are chronically ill or not, what if we could all give ourselves permission to make changes, to ask for what we need, to make tweaks in the workplace?

The way that we work now, it’s a default, but it was actually designed a hundred plus years ago. It comes from the way factories were originally designed, which are to reproduce the same thing again and again, eternally. It’s doesn’t really serve modern knowledge work, and lots of the work we do now. So, it was designed once, and we can design it again, which is not to say that there aren’t broader systems, societal systems and structures that make that hard. I’m not denying that. But what if there could be an internal permission, if we can start with ourselves, we can start by asking for what we need even in small ways.

Radical capacity-mapping

Question: if we’re accommodating chronically ill team members, how do we not make other healthy team members sick from picking up the extra work?

For me, working in a chronic illness or a disability-informed way means taking a much more radical stance on team capacity. If one of your team members has less capacity, for whatever reason, it, it could be illness related, it could not, then the capacity of your team has gone down. It doesn’t mean that all of that person’s work goes onto another team member. The capacity of your team is decreased and the workload needs to be decreased accordingly.

I’m quite firm about that and this is part of having a really good planning process. What’s going on this week? Where’s everyone’s capacity at? Do we need to push that deadline and give that client or funder good notice that that’s going to happen rather than telling them the day before? What needs to be adjusted for the real, actual capacity in the organisation and the team right now?

All change work is loss work

Question: what does “all change work is loss work” mean?”

I’m talking about everything here, but also in organisational work, I believe that all change work is loss work. I’ve been training in grief tending for the past couple of months (and hopefully the rest of my life), which is a method of holding space for grief collectively. I’ve been learning a lot about grief and loss through that. And actually, even before that, for the last couple of years, I’ve really noticed that in the change work that I do with organisations, that we don’t often name what we are losing through the change, even if the change is really positive; we’re still letting go of things.

Maybe “letting go” is a better word than “loss” in the organisational context. We’re stopping, or letting go, or letting some things compost, or letting some things die, in order to let new things emerge and grow. I have found that change work goes a lot better if we acknowledge that. So I might not use the really emotive language I’m using at the moment with teams around grief and loss and death, but I might say: “in the process that we’re doing at the moment, we’re adopting this new way of working, it means we’re letting go of this way of working. And actually, this way of working that we had before might have brought us a lot of helpful things or been really comforting or comfortable or known in some way. And maybe we want to make space to name what we are letting go of and how we feel about that”. I might do that in a retrospective, and bring some questions to that. In organisations that have a particular type of culture, it’s possible to create more of ritual space that’s a bit more explicit.