Welcoming neurodivergence in climate action - Rebecca Kinge

This blog reflects on learning about the coproduction process, which came from being part of Nifty Sustainability’s eco-hope and neurodivergence project.

In summary these key reflections about coproduction were:
* Careful and compassionate hosting
* Starting with a blank sheet, but with clear agendas framed around open questions
* Friendly "check-ins" and getting to know each other
* Acknowledge everybody’s strengths while ensuring people feel that it’s OK not to be OK
* Create space for honesty and for people to say what they need, with adjustments made
* A mix of communication and building ideas together 
* Online, chat, Mural, 1:2:1 chats, writing, visuals and hand signals
* "Yes....and" recognising we have different experiences and might not always have the same priorities
* Collective decision-making

From a neurodivergent perspective

My neurodivergence is something that can be hard to hide. When my brain gets overwhelmed, the flapping starts, my hands grab my ears, my speech slows, stutters or stops and a variety of other symptoms can emerge. For me, this is what it is to live with Functional Neurological Disorder,  Autism and awaiting ADHD assessment. In an ideal world without stigma and shame, I wouldn't ever want or need to hide these behaviours. 

Coproduction and eco-hope

As someone involved in climate action in Southampton, I welcomed the chance to connect with Nifty Sustainability and their project on Eco-Hope, Climate Change and Neurodivergence. The project developed through the principles of coproduction. Right at the beginning, Nifty’s Jen Dyer, asked if I was OK if things felt a bit messy, because we were starting with a blank sheet and we didn’t know what directions the project might go in.  Yes sure, I said. I don’t think we can work together as equals if a clear project plan is imposed from the start. It needs to evolve as we go, based on what we all say is needed and wanted. Dialogue not dictatorship!
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Through a series of online workshops, we decided what mattered to us about being neurodivergent and involved in climate action, and we worked out what we wanted to say. This culminated in a showcase event on 4 September where we shared what we found.

I’ve been working with others in Southampton on a project more generally about coproduction processes, in order to find out what people in the city think matters most about how we work together collectively. So for me it was brilliant to have the chance to be a participant in the eco-hope and neurodivergence project, without the responsibility of hosting the conversations or project. 

Here are some things that I have learned about the coproduction process and my experience around neurodiversity.

Firstly, all credit to Co-production Collective for funding the Eco-Hope project in the first place. We need brave and willing organisations to make space for topics to be explored through a coproduction lens. Some funders may be reluctant, given that they don’t really know what will come out as a result. So thanks to Co-production Collective for creating an environment for the unknown, trusting that the process of coproduction will deliver. I think there is plenty of evidence that coproduction processes do work, but that still needs the bravery of those putting their cash behind it.

The Nifty Sustainability team, Jen, Claire, Becki, Lauryn, and Ellie, worked well together to host the space, so those of us who were not previously involved with Nifty felt welcome and safe. It felt really appropriate that several people were involved in hosting the project. They all had personal contributions to make, but they also created a sense of teamwork and offered mutual support.

The Nifty team set the tone based on all of our strengths. If my symptoms came on during an online session, I knew it was “ok not to be ok”. I didn’t feel judged but felt appreciated for what I could input. Sometimes, I would switch my camera off and only use chat if the speech became too much. This also enabled those urgent thoughts that popped into my head to be shared with the rest of the group without interrupting the flow of conversation. The others present made the chat feel really interactive - lots of responses, likes and other emojis - so at all points our contributions felt valued. 

I can’t say I’m a fan of virtual meetings, but as we came from all across the UK, meeting online was the only way this project could happen. This was difficult for me at first because I couldn’t get the sort of personal connection with people that I would have liked. However, the fact that it was a safe space made it OK. The other thing that really helped me feel welcome was that there were regular chances to talk 1:2:1 with members of the Nifty team, so if there was anything that felt particularly hard, it could be expressed on a more personal level. I think that all projects should build into 1:2:1 time to help build those relationships.

Nifty worked hard to create an environment where we felt we could be brave, and we could talk about our fears and vulnerabilities. As Jen reflected during the September event, the process was perhaps too open for some at first, so the Nifty team stepped in to provide some “scaffolding” for the sessions. Jen would send out clear agendas, which included open questions. This led to a sense of safety for those involved because uncertainty can be way too daunting for many of us. 

When it comes to making adjustments in response to neurodivergent needs, accommodations for one person can be opposite to the needs of others, and this may need some exploring. As Lauryn said, “Just because it’s hard, it’s still worth doing.” 

All our sessions started with a Check-In around the virtual room, which helped us connect as humans. We didn’t focus on our roles or what might make us appear important (“head of something or other, at this or that company”). Sometimes the Check-Ins were general questions such as “sharing a time you've felt part of a community” and sometimes more specific to the work we were doing, such as “one key message you’d like to hear at our showcase event”?

It took me a long time to remember all the individuals involved in the meetings because I didn’t have the added benefit of seeing people in the flesh or getting a sense of their body language. The Check-Ins really helped. I must say that small talk can feel a bit overwhelming to me, but if there was chat about people’s cats or the weather, I knew it was ok not to join in, and I wouldn’t appear rude (being rude or aloof is something that autistic people get accused of all the time). It’s OK to find small talk a bit awkward.

Neurodivergent folk can sometimes be timeblind, whereas others need to stick to the clock. If a subject is of interest, it’s easy to go down a rabbit hole exploring that topic, which in itself can lead to some wonderful places. This is where careful hosting, with more than one person helping to keep on track and ensuring mutual agreement for going “off track”, is essential. Plus, the safe space to say, “I feel uncomfortable; can we adjust this, please?”.

Sometimes I said things about my experience of neurodiversity that didn’t reflect other people’s experiences. This was greeted with a “Yes…And” approach to dialogue, so at no point did I feel like my viewpoint wasn’t worth expressing or that sense of inadequacy that can accompany a tumbleweed moment.

I’m not involved with Extinction Rebellion or People’s Assemblies, and I wasn’t fully aware of the range of hand signals used by these forums to help people communicate in large groups. This was game-changing for me. As someone who can struggle with sounds and speech at times, I find hand signals are an important way of communicating when the words won’t get from my brain to my mouth. Using hand signals helps reduce the amount of background noise, which again can mean that group spaces feel less overwhelming. If you aren’t used to hand signals in group settings, then check out this handy guide 2518-XR-PeoplesManual_V3_FW_edit.indd (extinctionrebellion.uk)

When people express something that matters, I want to see that captured in writing. Having had some software provided to me through the Government’s Access to Work scheme, I’ve realised that this is part and parcel of my form of neurodivergence. Like many people, when I join meetings and gatherings that are based on verbal communication only, I can feel overwhelmed. There is too much to process, and I know I can lose the thread of what people say. The thoughts in my head are happening at a million miles an hour, and it's pretty much impossible to listen and fully process what others are saying. So, I was delighted that everything was captured in an online Mural. 

We were given the space to learn how to use the Mural and build our confidence to use it. Then, every time we met, we answered different questions on virtual Post-it notes. This worked well for me for many reasons, not least that during every 2-hour online workshop, we had at least 10 or 15 minutes of quiet time. We had the opportunity to think things through without lots of talking or noise, and this helped it feel like a reflective and thoughtful process. There was one session where I was feeling a bit overwhelmed with words, and I spent a few minutes checking out the emoji and cartoon images on the Mural, adding my thoughts with pictures rather than words.

The Mural means we can go back to see what we’ve talked about, seeing everyone’s individual contributions. The brilliant Nifty Sustainability team helped to put the structure around the individual thoughts, stepping in to summarise what has been said. They always checked in with us to ensure they reflected our group thoughts properly and gave us chances to speak more if we wanted to explore anything in more detail. 

I’ve talked a lot here about the challenges of being neurodivergent and how Nifty Sustainability has accommodated these in this eco-hope project, but this is, of course, not the whole picture. It was so uplifting to be in a space where people fully got and appreciated the wonderful positives that come from autism, ADHD and other ways that brains work differently. 

During the event in September, Gudrun made a great point that neurodivergent facilitation can be more mindful, as we know what it’s like to feel excluded. This is one of the many positive aspects of being neurodivergent. We have deep feelings and empathy and want to feel part of something meaningful, which fits very well with a coproduction approach.

A big takeaway for me and my work is to make sure that people have spaces where they can feel safe and explore issues together, giving people a chance to “find their tribe.” Of course, talking to others from different backgrounds and experiences is really important too, but let’s not forget the importance of building a sense of safety around all dialogue.

Ultimately, coproduction is about making decisions together as equals and ensuring that power plays don’t disrupt the process. By implementing the ideas mentioned above, we were able to reach a consensus on what matters most to us. Watch the September event webinar to hear this project's results.

Thanks, Nifty Sustainability, for inviting me on this journey of discovery. I look forward to seeing more coproduced activities emerging in the future. 

Rebecca Kinge
Sept 2024

Contact Rebecca through Southampton Collective or via Linked In