‘Nothing about us without us’ – addressing tokenism, conflict and exploitative practice in work with experts by experience

Involving the people closest to a social issue in the design, delivery, evaluation and investigation of services that address the issue is a well-established and important concept. Across different social services, government initiatives, research bodies and charities, we hear an array of terms such as ‘experts by experience’, ‘co-production’ and ‘lived experience practitioners’ to describe and highlight the importance of collaborating with service users or people affected by a specific challenge. And yet, the same pitfalls I’ve seen in the field of participatory work over the last twenty years keep tripping us up in both new and familiar ways. That’s not to say we haven’t made progress – I’ve seen some incredible examples of meaningful co-production. But there are sticky challenges to address in the planning and delivery of participatory services, and it feels important to talk about and address them.

The recent news story about conflict within the survivors involved in the Rotherham grooming gangs investigation was one of the things that got me thinking about this (the other is being in the process of designing new services for young adults, but more on that later). One of the elements that seems to have led to chaos and conflict in this investigation is a lack of clarity around scope, boundaries and purpose. Concerns about transparency were shared as part of the reasoning behind the resignation of two panel members last month. This raises the issue of clear communication, expectation setting and support at the outset of a piece of work (as well as throughout). There are potentially significant consequences, both positive and negative, for people taking part in processes like this, and it’s essential that they know what they are getting involved with, what is expected of them and what the project hopes or may be able to achieve.

Disagreements between survivors on the panel also highlight the fact that people with lived experience each bring their own views, needs and challenges to a process of addressing the issues they have faced, and that it’s likely that they will have a significant emotional investment in seeing them addressed in a specific way. Group decision making processes in this context are reasonably likely to yield disagreements, and this may look and feel different for people whose lives are being examined and affected by the subject at hand than for the professionals who will likely do their best to ‘unplug’ from it all at the end of the working day. Particularly when the service, research project or investigation involves discussions of traumatic and distressing experiences, every aspect of the planning process needs to be considered with harm minimisation and ethical practice in mind. It seems so obvious to say that working with survivors or experts by experience needs to be handled with a careful, compassionate and trauma informed approach. And yet, there are clearly still barriers to this approach being consistently carried out. Let’s consider some of the challenges, and how we might begin to address them.

‘Performers to the stage’

I’m working with young adults to develop some new services that seek to address gaps in their support provision. At one of the projects I’m involved with, I recently heard someone referring to being asked to ‘put on the show’, in reference to the request to share personal stories, talk about the impact of the support they’re receiving, or offer helpful insights to decision makers. Many of the people who have both lived experience and the time, motivation and confidence to do so are asked to share their stories and ideas over and over again. We’ll come back to the potential psychological impact of this, but for now, there’s something to consider about what it means to push the most confident people to the front in participatory processes. There will always be barriers to access to overcome, especially when working with populations who face complex challenges and disadvantages. Often, the people we most need to hear from are those who are most excluded from participation for many reasons, including some that are outside of our sphere of influence. But it’s important to consider ways to address barriers where possible, and to support those with less confidence and fewer resources to be heard.

What might help?

-Pay/reimburse people for their participation

-Provide tailored support and training to help experts by experience feel ready to take part in project planning, public speaking etc.

-Ensure access needs are responded to and spaces are as accessible as possible (this includes asking people to say what they need in order to participate)

-Structure group discussions, meetings etc. in ways that offer everyone a chance to share their views (using a range of methods to capture opinions, ideas and stories)

-Consider how you will assess a participant’s readiness for a specific role and how you will safeguard them

The Trauma Industrial Complex

This is a reference to the recent book of the same name by Darren McGarvey. He explores the ways in which the proliferation of traumatic stories shared in popular culture is driven by a cynical industry capitalising on distress regardless of the consequences, and may play a role in preventing people from recovering from traumatic experiences. There’s a lot of nuance to be explored in this discussion (I recommend reading the book for a deep dive into it), but the key question in this context is about balancing the potential harms and benefits if we are asking people to discuss traumatic experiences. In order to prevent exploitation or retraumatising, there needs to be sufficient support in place, alongside high levels of control and choice for those with lived experience.

What might help?

-Consider potential harms and how to reduce them in the planning and risk assessment process

-Offer access or signposting to appropriate support services

-Ensure informed consent by offering clear, comprehensive and transparent information ahead of sign up

-Build in choice points and explicit permission to decide how much to share, withdraw consent to take part, take breaks, say no etc.

The funding game – tokenism and competing for resources

Co-produced work can sometimes look great on paper but lack the necessary support structures to be successful and ethical. When charities, social enterprises and public sector bodies are competing for limited resources by demonstrating an approach aligned with funders’ priorities, we risk unintentional tokenism. There is an element of ‘saying the magic words’ in order to be in the running for any given funding pot, with trends and priority areas coming around in cycles. Participatory work is almost always a useful addition to a bid for resources, though some decision makers are more strict than others in requiring evidence that this is a meaningful aspect of the work, rather than an additional box to tick in order to stay afloat.

Sometimes, service user involvement is a great idea, but needs more resourcing to support key people to be ready to step into, and feel clear about their roles, and to protect enough capacity for successful delivery. This is a potential vicious cycle in circumstances where a participatory approach is needed in order to access enough funding and resources to sustain the work, but the resources required to carry this out well are lacking.

What might help?

-Realistic budgeting and setting aside enough resources for meaningful participation work

-Working with funders to share challenges and feed back what’s realistic in terms of resources required

-Be honest about the level of participation that’s required/being carried out

Space to slow down and reflect

Over-stretched services might find that the first things to be sacrificed in survival mode are those that are considered to be add-ons and ‘nice to have’, rather than foundational. The danger here is what I would consider to be a misunderstanding of the importance of what might traditionally be considered ‘soft skills’, ‘wellbeing activities’ and the like. I know from experience that building in space and time for reflective practice can make – it allows us to learn from experience and mistakes, to check for signs of bias and tokenism, to prevent burnout and to carry out good safeguarding practice. This may not always feel like a priority when services are stretched to breaking point, but they are likely to be much more brittle without the support of well held reflective practice spaces.

What might help?

-Create or use a framework for reflective practice sessions

-Protect weekly or monthly time for reflective practice groups

-Offer/access relevant training and CPD that incorporates reflective space

Transparency and trust building

Open and transparent communication is a key aspect of building the trust necessary for good collaboration and transformative work. It may be the case that key decisions and information have yet to emerge, but keeping communication channels open at each stage can help to prevent confusion about what’s possible and what’s expected of everyone. I’ve recently encountered a situation where the nature of professional, peer support and participant roles in a project I joined were unclear, leading to confusion, disappointment, and long delays to project delivery. There were potential reputational damage issues to address as a result of the lack of clarity at the outset. This was preventable, and in this case, a result of decisions being made by people who lacked connection with the project and the context it operated in – this, in itself, offers an argument in favour of keeping decision making as close to those with lived and professional experience of an issue as possible.

What might help?

-Communicate clearly about the scope and boundaries of the project, and each person’s role within it

-Be transparent about the level of participation you need and are able to support

-Check in with participants throughout to elicit feedback, check understanding and address any concerns

I hope that this doesn’t serve to make co-production and participatory work seem too daunting and risky to take on – while there are many considerations and situations to handle carefully and respectfully, it’s very much worth the effort for many reasons. For starters, it feels presumptuous to design services and solutions for people affected by a specific issue without putting them at the centre. It’s also less likely to yield the best possible results. And I’ve also found that supporting the efforts of experts by experience to overcome huge and complex challenges has been some of the most rewarding and hopeful work I’ve been lucky enough to take part in.

Preventing burnout: Coping Strategies for Witnessing Atrocities

Understanding the Impact of Witnessing Atrocities

The world feels like a scarily inhumane place to live right now. Just when I think I can’t be any more shocked by the cruelty of another act of internationally sanctioned violence, a heartless national policy closer to home or a story I’m told by a client, friend or stranger, something new appears and ups the ante. I was hesitant to write about how those of us fortunate enough to be observing tragedy and brutality from a safe distance might be feeling. But, if we’re deeply impacted by what we’re observing in the world and moved to try to be part of the change, we must have opportunities to pause, process and get back out there in any way we can. The same is true whether we’re campaigning against systemic violence, leading a project that poses a risk of vicarious trauma or considering how we engage with and communicate about the information we’re able to access round the clock via social and traditional media. Let’s explore how we might prevent burnout, overwhelm, normalising what may once have shocked us, and feeling frozen with guilt or shame.

The most pertinent example of this for me right now is my response to witnessing seven months of genocide. I feel a sense of obscenity about the fact that, for me, life goes on more or less as normal when I’m not engaging with this horror. Many professionals working in frontline services and people who have lived through ongoing traumatic events can attest to how quickly the unthinkable can start to feel normal. We’re an incredibly adaptable species, with a need to make sense of our environments and the capacity to do what needs to be done in order to survive. Our brains are wired for energy saving wherever possible, and there’s a finite amount of energy available to stay in a place of shock, fear, anger, disgust and so on. And so, we may start to become numb, to distance ourselves from the costly business of feeling. If we’re very lucky, we may also be able to look away, and to avoid engaging with things that are happening to ‘others’. It’s an understandable response, and none of us should be put in a situation where we’re forced to reckon with the horrific choices made by fellow humans on a day to day basis. But something I look out for in my emotional world is a sense that the unfathomably awful images I’m seeing each day online might be starting to feel normal. It’s a sign that I’m reaching capacity and need to clear some space to process my emotions before I re-engage. Yes, that’s a privilege in itself – for anyone in literal survival mode, this is not an available luxury. But as allies, we’re of limited use to those we want to support if we’re burned out, numb or stuck. Using the resources we have and leaning on community to step in when we need to step away is crucial.

Compassion fatigue and vicarious trauma can be rife in systems that are under-funded, under-appreciated and over-subscribed. Taking on responsibility for too many people and too many projects can mean dangerously high stress levels for all, and a sense of distancing that starts to threaten empathy, mentalisation[1] and the capacity to see others as fellow, flawed humans who are probably doing their best. There are obvious structural solutions to this problem in the form of well funded public services including high quality training and support. So, when we’re not applying political pressure on this issue, what can we do about burnout and vicarious trauma prevention for leaders, campaigners and anyone who feels called to do something about the horrific events they’re witnessing?

COPING STRATEGIES for change and resilience

Firstly, some form of pressure valve can be invaluable. This can take many forms, from reflective practice spaces, to grief circles, embodied practices and space to share our thoughts, feelings and experiences with others who ‘get it’. It’s also important that these opportunities to let go, feel, express and reflect are contained and limited. We can’t get stuck in grief, despair, hopelessness, fear or anger, though it’s important to acknowledge, rather than suppress them. Knowing that there’s a specific time and space to let off some steam can help us to get through the day. In my experience, a well held space with a managed transition back into day-to-day activities is very much worth the required resources. That transition from engaging and expressing back to a more contained place might involve activities and tools that intentionally change the energy in the space and reconnect us with our capable, Adult selves before we dive back into whatever needs to be done. The timing, frequency and format of pressure valve activities deserve some careful consideration. And crucially (especially in a workplace environment), all involved need to feel safe enough to show up authentically and express what they need to express. If this doesn’t feel possible, there may be wider cultural issues to address within the team or group.

Perhaps that sounds easier said than done, especially if what people are processing involves deeply divisive and potentially traumatic themes. What do we do about competing needs? There are no magic wands here, sadly. It’s crucial that people are able to set and maintain their own boundaries, rather than feeling coerced into participating in something that doesn’t feel right for them – feeling ‘done to’ can often be a contributing aspect to the onset of burnout. One organisation that I work with offers separate (optional) reflective spaces for people of different identities, as well as spaces open to all – this may be a helpful approach to potential divisions and concerns about psychological safety in some cases. In any situation where discussions of sensitive topics might be encouraged, it’s advisable to have a strong and compassionate group agreement or shared set of values that everyone signs up to. How challenge and conflict might be met is a helpful consideration here.

‘We fight, we rest and we rise’ - taking breaks and re-engaging

(Jenny Moore)

When it comes to engaging with disturbing news, images and first hand accounts of violent and traumatic events, what’s the ‘right’ level of engagement? The potentially negative impact of excessively consuming social media isn’t a new or radical concept. I believe it might often be oversimplified or overstated, but I’m also aware of what my own experience tells me. It’s important to step away, to try to avoid the ubiquitous doomscrolling habit, and to give our eyes and brains a break from the never ending stream of new information and artificial blue light. We must apply the usual ‘put your own oxygen mask on first’ advice and look after our own health, listen to our bodies and let our minds rest. And yet, this is balanced with regular calls on those of us watching atrocities from a distance to ‘not look away’. Daily access to video footage, pictures and first hand accounts of horrific cruelty is a new concept, and brings an additional sense of responsibility, since we can’t claim to have been unaware. We’re being asked to witness, to mobilise, to see people’s humanity and recognise the value of their lives. For many of us, what we witness will feel like too much to bear or believe, and what we can offer will feel woefully inadequate. But we can witness to the best of our ability and capacity, taking space to re-energise where we need to and then re-engaging. Sometimes we need to look away for a moment, while perhaps connecting with gratitude that we are fortunate enough to do so. There’s an important distinction here between gratitude and guilt or shame. Sometimes, what we feel grateful for is an unearned privilege – something we’re lucky to experience or avoid due to the accidents of birth, time and place. Acknowledging that luck doesn’t necessarily have to lead to feeling guilty about it, though that’s an obvious next step (as is defensiveness, at times). The thing that’s so difficult to face is that occupation, war, famine, pandemics and so on could happen to any of us at any time. We may hope that, if it happened to us, that those not directly affected might step in and help. We’d probably want them to be as well resourced as possible, to be compassionate, informed and ready to roll up their sleeves and take any action, big or small, that might contribute to our survival and eventual return to thriving. We probably wouldn’t want them to be burned out, numb, paralysed with guilt or fear of doing the wrong thing or so overwhelmed and in denial that they refuse to acknowledge what they’re seeing.

building community support networks

When we’re feeling powerless, one of the solutions may once again be found in community. Creating spaces to decompress and share our experiences with others can help to relieve some of the heaviness of witnessing trauma, and in turn, can re-energise us for the onward journey. And when we’re feeling powerless, we can celebrate the small moments of shared humanity where we find them. We can remind each other of times that unbearable cruelty and oppression were forced to come to an end through political and financial pressure that millions of people came together to contribute to in their own ways, however small.

Resources & references

If you are feeling overwhelmed or experiencing burnout/vicarious trauma, please seek support:

Contact me to find out if I can help

Visit https://www.mind.org.uk/

 Self-care resources by TARSHI

Support for Palestine:

Gaza Emergency Fund

Medical Aid Palestine

Palestine Solidarity Campaign

‘We Fight, We Rest, We Rise’ (Jenny Moore/F Choir)

[1] Mentalisation is the ability to imagine what another person may be thinking and feeling

Celebrating Neurodiversity

Being diagnosed with ADHD well into adulthood is a fascinating experience and one I’m glad I had. My understanding of what ADHD is has changed a lot over the years. I was vaguely aware of the concept during my school career - it was something ‘naughty boys’ had and manifested in an inability to sit still, disruptive behaviour in class and bad grades. This didn’t apply very neatly to me, so it didn’t occur to anyone as a possibility, as far as I’m aware. I was easily distracted and chatty (a word I’m sure was used exclusively to describe girls), but not ‘badly behaved’. I was brilliant when I put my mind to it, if I do say so myself! The issue seemed to be whether or not I wanted to put my mind to it. I did well at school and university, except in anything too mathematical, but I learned to do well by the seat of my pants. To use creativity and caffeine to pull me through year after year of slightly left-field essays finished at 4am. To sound like I’d read a book after skimming through it on the bus. I eventually learned better study skills and time management capabilities but it was an adrenaline-filled journey getting to the stage of ‘reasonably sensible adult’. 

During my MSc, my main area of study looked at how young people educated outside of mainstream school due to ‘social, emotional and behavioural difficulties’ self-identified. More specifically, how young men and young women* internalised different messages about their struggles. Most of these young people had ADHD. Safe to say, at this point I had no idea how close to home my studies were. I was then of the belief that ADHD diagnostic criteria were far too blunt an instrument, that it was over-diagnosed and that we were pathologising children for not fitting into an education system that was not designed to meet all learners’ needs.  I still believe there’s some truth in that last point, but learning more about ADHD as a neurological difference in the years leading up to my diagnosis made my views on the rest a little more nuanced. 

It feels more positive, here in 2020, to be discussing Neurodiversity as a term to describe, for example, ADHD, Autism Spectrum Disorders and Dyslexia. The word is celebratory, with ‘diversity’ seen as something to be achieved and delighted in. An acknowledgement of all the different ways that brains can work and that this contributes to the many different skills and traits that make up a well-rounded society. Of course, they are still described as ‘disorders’ and still, in many cases require treatment, be it medical or psycho-educational. I’ve been reframing the language of ‘disorder’ for myself by looking at some of the traits and tendencies that can present challenges, and how they so often seem to have a ‘mirror’ trait that is an advantage (like the struggle to think clearly through a task in ordered steps, vs. the creative thinking that gave me the edge in those 4am essays). Still, a society that, just like the school system I remember, is not designed with Neurodiversity in mind can be an exhausting place to navigate.

I have found that body work, be it singing and humming, breath work, yoga or more active forms of meditation are hugely helpful in terms of bringing me back to focus and clearing my busy head. I’d previously put times when I was especially distractable, fidgety or struggling to regulate my emotions down to other causes - did I have anxiety? Was this unprocessed trauma? This is by no means black and white - having a diagnosis doesn’t mean that every road leads back to ADHD. And while it’s true that feeling anxious, stressed, over-tired or otherwise ‘out of whack’ is likely to exacerbate symptoms, I hadn’t realised that there was an underlying cause. But even before I knew the terminology or the layperson neurobiology, I knew what resources worked well for me. Although at first, I struggled to settle into a routine with using them, the more I did it, the more progress I saw. Training as a practitioner gave me even more opportunities to sing, breathe and get in touch with my body. This time of crisis that we’re living through really intensifies the challenges we already face, meaning that it’s more important than ever to stay on top of self-care and connect with our bodies, as well as to stay out of shame when we have a less ‘functional’ day.

A relatively high percentage of the people I’ve worked with over the years have been Neurodiverse in some way. This, along with my own experience, has led me to get really interested in finding out what links and overlapping traits might exist between, for example, ADHD, trauma and attachment (watch this space!). Academic interest aside, it’s been a privilege to be on this adventure together - using my skills and clients’ expertise in their own lives combined to figure out what works best for each amazingly unique person.

*I was quite unaware of the concept of non-binary gender identities at this point! 

Beyond the silver linings

It’s almost four months into the Covid-19 crisis and, in the UK, we’re four weeks into lockdown. At this point, I feel things edging past the initial stages of fear, moments of optimism and finding creative and comforting ways to amuse ourselves and nest. A month of lockdown means that a ‘new normal’ is emerging, along with questions about what habits, rituals, skills and emotions will be carried into the post-pandemic world.

Having written previously about a need to find space for the hopes and fears, joys and despairs present in our current situation, I have now seen first-hand examples of all of these. Things that I will never forget because they were so bleak and impossibly sad, and things I won’t forget because they were perfect examples of how we’ve evolved to seek connection and cooperation, to create and adapt. I wonder how this will be preserved in both my own and our collective memory. What will stick? What will we look back on in disbelief? What will be filtered out for denying our established world view?

As we experience a collective trauma, I’m struck by the different ways that we all attempt to make sense of insane situations. This attempt is a go-to trauma response: ‘if I can just find the bigger meaning, I can move on’. In a world-changing event reminding us that we can’t escape from our biological nature, there isn’t always a neat box or an accessible ‘why’ to help us process the trauma. I stand by my determination for this crisis to lead to a collective re-think of how we want to organise society; and yet, this feels a bit glib in the face of the stark reality of the loss, grief, fear and isolation that is being experienced by so many right now. The best I can hope for in that regard is that our actions now are helpful to ourselves and others wherever possible, and that most of the big learning will come with hindsight and be turned into action. It’s been said so often already, but the old ‘business as usual’ is no longer a possibility, whether we’d like it to be or not.

So with all of this in mind, how do we start to look beyond our much needed silver linings, the day to day practice of building routine, finding distractions and creating ‘safe enough’ nests for ourselves? How do we go about healing from a collective trauma? 

Part of my vision in setting up Live and Breathe involves developing the tools to build communities that foster social justice and direct, wholehearted communication. No small feat, but a vision is about dreaming big! Somewhere to start towards this is normalising vulnerability. Covid-19, it is said, ‘does not discriminate’ and is here to remind us all that there by the grace of God/the universe/insert your ‘big picture’ belief here… go we. While it’s true that a virus does not care about  who you are, it does affect some communities disproportionately. That’s an important point for another day. But health inequality aside, a pandemic is certainly one of those rare situations that forces us to stare down our vulnerability and our mortality, regardless of how wealthy, healthy, hardworking or virtuous we may be on the surface. I can feel the ripples of a sea change creeping in, as formal emails suddenly contain opening gambits like  ‘I hope that you and your loved ones are safe and well’ and Zoom calls involving ‘hardened’ business folks start with a wellbeing check-in. This chipping away at the facade of stoicism and invulnerability is how we start to grow and I hope it persists. Permission and encouragement, when required, to start a work meeting with ‘I’m having a shitty day, I’m using my resources and I’ll be ok, but here’s what I need from you’. The courage to get in touch with that old friend you haven’t seen for years and were worried about contacting again in case it was awkward. Using our experiences of having to give up our routines and re-learn how to work, socialise and live to enable us to be honest about when we don’t know the answer to something. Vulnerability is something I have struggled with showing for years. And I’ve done years of work on getting comfortable with it, though there’s still so much room for growth. So here’s an intervention if ever I’ve seen one - a horrific situation that exposes our common humanity and demands our vulnerability and compassion. 

When we’re feeling too vulnerable and too exposed to go analysing a crisis or thinking about what we can do to help, our job is to breathe, self-soothe (I recommend putting together a go-to collection of soothing sensory items in advance - fluffy blanket, hot chocolate, favourite smells, music, whatever works for you) and to find connection and support, even if it’s ‘just’ remotely watching Netflix with someone who cares about you. And when that difficult moment passes, our job is to find ways to name and express our feelings. I hope that this brave new world is brave enough to let us all admit that sometimes we’re vulnerable.