I've had a few false starts on writing this. It first began as the gem of an idea after discussion spawned attending a National Institute of Health Research Event. It burned bright enough to evolve into actual paragraphs after attending the British & Irish Group for the Study of Personality Disorder annual conference, and my thoughts returned to it after a local NHS Staff Networks conference yesterday.
They were all different events, by different organisations, with different attendees. But there was a common theme of discussion amongst Lived Experience Practitioners (LXPs) - by LXPs I am referring to people who use their lived experience of mental health conditions within their job role. The common theme was the emotional labour involved in the attendance of each event. Emotional labour typically refers to the management of emotions and feelings needed to do a task or role. However, I am specifically referring specifically to the energy and cost to Lived Experience Practitioners in managing emotional labour at these events. It is generally invisible, unseen, and only spoken of between us. Sometimes we don't fully understand it until we figure it out after during conversation afterwards. If we've attended alone, it can be something we question the existence of because there is no way of breaking down why we are left with strange feelings that can't be explained. Hopefully this is a start in trying to record a bit of what I've noticed, experienced and discussed with others.
The world of service user involvement & activism is fragmented. There isn't one universal service user opinion or stance. We have fought so hard for a voice or to be included. A prime example is the annual convention of the British and Irish Group for the Study of Personality Disorder (BIGSPD). In its first incarnation, at the very beginning, service users were not allowed to attend. Now the group is co-chaired by an occupational and lived experience presidency, abstracts are open to all, and there are 10% fully funded bursaries to people with lived experience. However, that level of involvement in conferences is rare, and even at these levels, there is an insane amount of pressure for those with lived experience who do present or play an active role in these events to do it well. Not mess it up. Not let the side down. Not exclude the other service user views. I could go on and on, there isn't an exhaustive list. But what I'm trying to point out is that there is a LOT more pressure on individual LXPs who speak or are actively taking a role - this applies to conferences across the board. Part of the reason is the lack of opportunity that exists in the wider environment. If most talks or conferences were co-produced, there would be more of a platform for the range of views to be present. It would take the heat off one lone 'service user' to get up and represent us all, because - *spoiler alert* - that just can't be done.
One day event I attended had been preceeded by a heated Twitter debate the night before. I call it a debate, but it was savage. Being criticised by our fellow activists hurts more than anything else. The person who had been criticised was one of several Lived Experience speakers on the bill. She got up there and rocked it. She gave a feminist critique of diagnosis that was thought provoking, engaging, well referenced and related back to real life. However, before and after, her face looked broken. It was the first time I'd met her in real life. It is important to remember that critique comes from a range of perspectives and we need to see those as a reminder that our needs as a collective are diverse, dependant on experience and environment. But currently the environment seems to be setting us up against each other as we fight to be heard and it's grim.
Part of the fragmented nature of our work also means that it can be hard to gauge support or read how others are feeling. We often attend these events alone. We are taking with us a lot of baggage from working within systems that aren't set up to work with us. We then attend events that often have a focus on improving those environments or showcasing best practice. There is something that is very difficult about managing the two very different realities. Consultants and change agents manage these through continual professional development, coaching, supervision, education, discussion with colleagues, reflective spaces. Either these are built into their employed roles or they are in private practice and use a system of support in kind or are paid a sh*t ton of money they can reinvest back into their work. Facetiousness aside, the point is that these are more readily available to our non-LXP colleagues. LXPs mainly work within low band, low pay, low resourced roles. The parity of support is not either not accessible to us, or there are barriers which require additional energy to gain the access.
A few weeks ago I attended the BIGSPD conference. I went from an environment of constantly lobbying to have expertise acknowledged to one where I was in a role that required and acknowledged expertise as standard. I presented with fellow LXP experts in my field, and they were also respected as such. We were acknowledged with an award, voted for by members. A research project I am involved in won runner up to a poster prize, runner up to a large national project. It was surreal, it was nourishing, it was exhausting... it was so many things. The mutual support from fellow LXPs at that event will help keep me going for the year ahead. However, the come down on returning back to 'reality' was crushing. The award and prize may have meant something there and personally to me but back in an environment where that approach to working isn't acknowledged or understood, it made little impact beyond feeling like an irritation to the status quo. It was somehow even missed off the staff newsletter. It is true that conferences aren't the realities of work, however my experience has made me question where the delusion lies. The three pieces of work I was part of presenting there were very real and required a skillset that could hold its own with experts and researchers from a wide range of disciplines. To work so easily there after struggling so hard in the other environment has forced me to bypass my coping mechanism of ignoring the struggle and look at it, feel it, acknowledge it, see it.
It is like taking a fist to the stomach.
Having had the literal physical experience of a fist to the stomach as a child I can say that is an accurate description. You don't feel the initial punch, but you do feel the accompanying spasm as your stomach contracts, the terror of being unable to breathe and the panic of whether air will return to your lungs before you are suffocated and slip into death. It is disorientating. It is confusing, particularly when the punch is from a caregiver - a source that is not supposed to treat you this way. The example also completely mirrors the experience of living in a reality where the punch is supposedly ok but would not be accepted in other environments.
Whilst the comparison may seem too strong or painful to read, this is just a small example of how it feels to work within environments that cause pain, do this over a long term period and do not acknowledge or work with you to ensure that there are adequate adjustments to provide relief. Sometimes it is not even an adequate adjustment - in my case, just having the opportunity to be employed in line with my training and expertise. This was my experience at the conference -which was then cruelly juxtaposed with being the most highly qualified and experienced member to a team where I take home the lowest pay. The systemic reality is that my qualifications, working experience and personal expertise is worth less than my non-LXP colleagues. This has been the case for over seven years of NHS working. I've been trained to work within strategy and service design. That roughly translates to a Band 8 within the NHS, a pay packet of roughly £50-£60k. The reality is that in my current role as an LXP, I'm taking home a similar wage to my 16 year old self who used to do a cleaning job after I left school to care for my Mum, who sustained horrific injuries after a suicide attempt, which led to her death some years after. But that was back in the 90's. Sixteen year old me wasn't asking Mum for bus fare to get to work. 41 year old me has to get petrol money of my husband to make it to work in the week before payday. I am currently - literally - worth less than my LXP colleagues within this system. I know I'm not - but the workplace is the delusion around me, and it is where I spend my time, so I have to find ways to cope with that reality. The emotional labour - or was it relief? - of being in the different environment broke through that. I didn't anticipate the toll of returning back afterwards.
A good way to test your grasp of reality is to check in with others. The small group of fellow LXPs that had been part of the shared environment we had created at the conference were also struggling with similar issues, albeit to different extents dependent on their situations. There is a much wider gap between my employed day job and skillset/qualifications than any others in the group (most are from areas that employ or privately contract senior LXP posts), so there are no direct comparisons. However, we all felt and mourned the difference on return to the reality we work in.
What is interesting is that we were a strong core of individuals who, over the years, have met at BIGSPD and supported each other and thought about how to prepare from and then manage the emotional labour involved at these events. Our preparation and mutual support was powerful in supporting us, but also incredibly painful in experiencing this and then noticing its absence afterwards.
However, not everyone has that experience or support. Our tight hub during the event would have felt very different to people on attending on their own, whose stance in activism or involvement may have been different and spent the event feeling the effect of being the 'lone voice'. We spoke to other LXPs, but our busy schedule during the frenetic three days meant that we could have easily missed a shy newbie, or unwittingly left someone feeling excluded had they wanted to connect. It is for this reason that although I had a very positive experience as an LXP at this year's BIGSPD, this does not by any means negate the experience of anther LXP who may have had a negative experience. Both can give real insight into the impact events can have, and their causes.
I experienced the other side of attending an event at a Staff Networks meeting. I had no involvement in this, so was purely an attendee. The speakers were impressive and gave eloquent an beautiful explanations of systemic barriers and discrimination. These were delivered within the more traditional and developed understanding of race and sexuality - disability activism often looks towards the more established understanding of these in terms of understanding difference. In this way, the speakers message sang to me and rang something inside. The problem was that after several months of concentrating efforts on raising systemic discrimination and barriers to career progression of LXPs, this felt very raw and very close to home. I had been trying to communicate how these exact issues were being experienced by LXPs. As staff who openly use a protected characteristic within our roles, in theory this should have been easily understood. But adverse Mental Health conditions are an invisible disability, and somehow the existence of these systemic issues and the pain they cause us is also invisible. The experience moved from a wave of grief that they could be seen and acknowledged for all characteristics but Mental Health, the business we are in. I noticed the lack of fellow LXP attendees - I counted only 3 including myself. The grief was a mix of guilt at not communicating better, anger at not being listened to and hurt at not being included despite constant efforts. The embarrassing flow of tears started and after I realised the leaky eyes were't turning the taps off any time soon, I nipped to the loo in the hope no one had noticed the mask slip, that I could have a blart in secret, then readjust and style out said mask. At exactly the same time as I opened the door to return, I one of my fellow LXP colleagues appeared. A hug later, I realised that although I was feeling particularly sensitive due to the reasons already explained, the core feelings, observations and issues were understood and shared. A small action like that was the sense check I needed - it validated the feelings as being ok, and helped me back into the place needed to hold the conflict of the negative and positive in a way that didn't have me holed up in a toilet cubicle.
These experiences are all different, and not all my own, but they definitely illustrate the emotional labour we talk about when it comes to attending conferences and events as LXPs. There is definitely some work that could be done in understanding how to foster welcoming spaces, reduce barriers to entry, prevent feelings of isolation and facilitate mutual support for Lived Experience Practitioners at events. We can (and do) a lot of this informally amongst ourselves, but it would be great to have more event and conference organisers actively consider these with us in the planning process.
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