Are mental health folks really welcome to join the panel? It’s debatable.

18 Sep
Linenfold wood panelling at Sutton House (National Trust)

Linenfold wood panelling at Sutton House (National Trust)

When recently I was asked to sit on a panel that would be debating a topic that highlights important issues of how psychiatric detainees are cared for, I was nervout but excited. Here would I, with no credentials other than my twitter account and blog, be sitting alongside professionals at the top of their fields, talking and debating as an equal. But – and there is a but – the debate’s organisers hadn’t thought through the fact that I use a pseudonym and don’t post photos or video of myself anywhere. This wouldn’t matter – I have attended public events before under my pseudonym – but for the fact that the debate organisers had just begun videoing their debates and placing them on YouTube. On the one hand, they’d invited someone who uses a pseudonym and a bath avatar to join the panel – and, on the other, they were planning on creating a permanent video record of my appearance that would be available worldwide.

If you haven’t been to a panel debate before, a question or motion (such as “Mental health patients should be given a bra allowance to help with the expenses of medication-induced weight gain”) is put to the audience for a vote, the chair invites the panel members to speak in turn, there are then questions from the floor, short closing statements and a final pubilc vote to see how many, if any, of the participants have been swayed one way or the other by the arguments put by the opposing sides. At the debate I’ve been invited to join, panel members are videod close up as they make their short presentations of their case and in long shot at all other times. Putting my face on YouTube forevermore is not for me.

I’m not ready to shrug off my pseudonymous existence at this point: I’m a private person with a life to lead beyond mental health activism and moaning on about myself on twitter. I have nothing but admiration for those pioneers who put their faces to fighting mental health stigma and discrimination, but it’s not for me. I don’t want sectioning and mental health to be the first and perhaps only thing people think of each time they meet me. I like to be able to get to know people and then share with some of them in my own time details of my physical and mental health as and when relevant. For most people and for most purposes, my past history of sectioning and my current mental health problems aren’t a topic of casual interest.They’re private matters and I’m a private person. This isn’t my work it’s my life. We each do what we can in a way we can, bearing in mind self-care. It all contributes.

I surely won’t be the first person invited to sit on a debating panel who wishes to maintain privacy or has some other factor that needs accommodating because it doesn’t fit within the standard template of expert by profession. There must be ways it can be accommodated. If people organising debates are serious about including mental health folks on their panels, it’s time to make that a practical reality.

It wasn’t so long ago that “manels” – debates with male-only panels chaired by men – were expected to go unremarked. Indeed ,the last major debate on a mental health topic I attended consisted of such a “manel”, including Sir Simon Wessely, Will Self, Darian Leader and a representative of the pharmaceutical business. When someone from the floor raised the question of why everyone on stage was not just a man but a white, Western, middle-class professional male, they were given short shrift. “Well, if you’re going to question the whole premise of the debate …” said Sir Simon. Next question please.

However, the constitution of the debate’s chair and panel are important. It influences not only the content of the debate but also the audience that will attend and what happens afterwards. I’m more likely to go along to a mental health debate where I know the voice of a mental health expert by experience will be heard alongside those of experts by profession. Holding a debate on the experience of black people living in the UK where the panel consists solely of white professionals is obviously misconcieved: white professionals who’ve studied the topic in depth and have experience on the ground are, nevertheless, still not black. Professionals who’ve studied the lives and experiences of people with mental health problems have still not lived our lives and experiences – especially in the case of severe and enduring mental illness.

Our voices need to be heard, not least because the personal perspective can bring to life otherwise dry debates on small technical points and, it seems to me, calm down some of the more outrageous professional posturing. It’s just not possible for mental health professionals to say some of the things they might say if they were on a panel which consisted solely of only other professionals. And that’s a step forwards.

We have moved on from the days when the only contribution mental health folks made to public debates would be giving permission for their story to be used during the debate. We’ve moved on from the days when the only way the voices of mental health folks were heard was when pre-recorded pieces were played to illustrate a particular point the professionals would then go on to debate between themselves (though that is still a surprisingly common format). We’ve moved on from the days when it was considered a wonderful concession to permit mental health folks to sit graciously at the back of a lecture hall full of medical students and mental health professionals while other mental professionals on the stage discussed theoretical concepts that supposedly related to mental health folks. We’ve even moved on from the days when the only person you’d see on a debating panel with lived experience of mental health problems (especially severe mental illness) was there by virtue of their professional expertise, their lived experience a stamp of added authenticity rather than the reason for their presence on stage. Sometimes, nowadays, sometimes mental health folks are even invited to sit on a panel simply because of our lived experience. We have moved on.

But how far? Yes, I have been invited to sit on a panel with eminent professionals and experts in their field who’ve been doing this for decades between them when all I’ve got is my funny brain and what I’ve stumbled upon on twitter. Yes, someone has picked up on what I tweet about and decided that my views are worth putting to the test alongside these full-timers. Yes, I’ve been invited to sit on the panel of a prestigious debate. However, how meaningful is that invitation?

For an invitation to be meaningful, it must be possible for it to be accepted, whether from the outset or whether that requires the inviter to consider making reasonable adjustments to accommodate the disability or personal or other circumstances of the invitee. That’s me. That is, in general, mental health folks who may not be able to fit into existing structures, developed as they have been over decades or more to serve the needs of professionals, healthy people at the peak of their abillities.

Different mental health folks will have different requirements in order to participate in debate panel. Do we want them on panel, or not? Is it really a goal, or merely an aspiration.

Maybe one person will wish to have an assistant next to them on the stage; another may wish to sit behind a screen to cut down the sensory input. Another may need a sign language interpreter. Would a Deaf person be told no, you can’t be on the panel unless you fit in & hear like us? I would hope not. Mental health folks might seem to be “messier” to accommodate than your bog standard professional but, unless we are accommodated, how can we take part? How can that invitation to participate be meaningful if the participant is in a wheelchair and the venue is the top of a tall tree? Not everyone in a wheelchair can climb tall trees but, if you provide an elevator platform to lift the person up, or a balloon to dangle them from, or move the venue to the ground, then that’s the point the invitation becomes meaningful.

Seems to me that sometimes debate organisers like the idea of having experts by experience on their panels, but haven’t thought through the practicalities. Of course there’s no reason for debate organisers to have thought of everything in advance but, once issues are brought to their attention, it’s time to think and act. Once issues of unconscious bias and privilege have been raised, it’s good to consider how things could be done differently so as to be able to move forwards.

It’s common for marginalised groups to feel silenced by being told “If you can’t stand the heat, stay out of the kitchen”. Or, in this case, “If you can’t stand to have a permanent worldwide video record of your face close up, stay off the debating panel”. If there’s a genuine intention to have mental health folks on panels as equal debating partners, work out practicalities of facilitating it.

Finally, here are some questions I’m throwing open for debate. If you were invited to sit on debate panel on a topic you know about with three other people (two for, two against) and a chair, what would help you be able to say yes? Would you want to have a friend to sit next to you? Would you like to be able to sit behind a screen so you can’t see the audience? Would it help you to sit in an adjoining room and participate via video link? Would you prefer to take place sitting at home via Skype? Would you prefer to have two or three of you sitting together so you can jointly give your 6 minute presentation and answer audience questions? Would you like training beforehand and a trial run to get used to how these sorts of debates work? And, of course, would you need travel and potentially accommodation expenses for yourself and potentially a helper in order to be able to attend? How can we make it easier for people to hear us? Please share your comments below.

It’s all very well inviting us folks to sit on debate panels, but not all of us can fit in with the way things are done now.

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6 Responses to “Are mental health folks really welcome to join the panel? It’s debatable.”

  1. J 18 September 2015 at 7:16 am #

    I have a similar dilemma. My twitter name is anon because I feel able to be outspoken without consequences. I’ve found as a patient rep my care was compromised as ‘staff were afraid of me’. But I do go to conferences and speak under my own name. I find it incredibility difficult to do this and usually need a companion which in itself is a problem cos I may get expenses for one but not the other person.
    I’ve been asked to go before a judging panel recently but now been told its likely to be highly stressful and therefore not for me to do. I would like to talk about my part in the project. It’s something I’m passionate about but I can’t. I might be able to add value to the submission so why can’t they take into account that I may be more fragile than a professional person. And then there is the £100 it would cost for me and an essential companion to get there….

    • Sectioned 18 September 2015 at 3:17 pm #

      Thanks for your comment, J.

      It’s sad to learn that your care was compromised by staff fear of your role as a patient rep. Ideally staff see patient reps as allies, helping them do their jobs better by highlighting the (hopefully rare) instances of less than optimum practice.

      It’s great you go to conferences and speak under your own name with the help of a companion – though concerning that you have to fork out from your own pocked to cover their expenses. If you need a companion in order to participate, it should be a given that their expenses are paid too.

      It would be a shame if you were prevented from sharing your part in the project, especially as it’s something you’re passionate about. People who are prepared to contribute to better mental health care for others by participating in projects and being patient reps really should be facilitated to share their experiences far and wide, so long as self-care considerations permit.

      Rather than saying the judging panel will be “highly stressful” and leaving it at that, it seems to me the organisers should make reasonable adjustments to accommodate the needs of the participants. I’ll use my analogy of a Deaf person needing interpretation or someone in a wheelchair needing a wheelchair-accessible venue. If adjustments can be made to accommodate physical health conditions, why not mental health conditions? This should be something for the organisers of the event behind the judging panel to persue urgently so as to make the event accessible – not simply say, in effect, “You’re Deaf/in a wheelchair – tough luck”.

      If organisations really are serious about broadening things out beyond the “usual suspects” – experts by profession – they must take it seriously rather than dismissing concerns out of hand.

      I hope you are able to attend and share your passion with others!

  2. J 20 September 2015 at 2:57 pm #

    Sectioned thanks for your reply. This blog really resonated with me the day I read it having heard that I was part of a team shortlisted for an HSJ Award earlier in the week and been asked to talk to the judges and then to be told it was far too stressful so request retracted. Part of the submission was the fact that experts by experience are used in training professionals yet the judges will not hear anything from this horses mouth. I think I will pluck up courage and use the anonymity of my other twitter name! and point this out to them.

    When I was this patient rep and an inpatient I began to wonder why no staff would ever give me even a second of one to one time until on staff member told me why. The nurse consultant from the hospital that ran this group using patient feedback was horrified because other patients had refused to join in the past for fear of compromise and they were right. I think I must have a note on my records that says don’t touch this patient with a bargepole!

    Great blog as ever and congratulations on yr Mind nomination

  3. anon 20 September 2015 at 6:58 pm #

    A few years ago I gave a keynote speech based on my lived experience to a conference run by one of the big mental health charities. Before I agreed to give the speech I requested that no photographs of me would be taken and that I would simply be listed on the programme as a service user rather than with my name. In the event my real name was put up in huge letters on the screen next to me and a senior member of the staff at the charity tweeted a photograph of me giving the speech. I received an apology and the photograph was removed from twitter. Since then, however, I have not been asked to do another talk for them and almost feel like I have been blacklisted. I started doing activism before FB and twitter were mainstream and used to give quite a lot of talks and got very, very positive feedback. Nowadays I am not asked and I’m not sure I’d agree to anyway given that all conferences are attended by people on their phones and tablets publishing the proceedings to the entire online world. While people with mental health problems who are willing to be identified with their mental illness are now getting more opportunities to be involved I think that people who want to remain anonymous probably have less of a voice than they did in the early 2000s. I suspect that also means that it is the people with the most severe illnesses who are taking part less (in offline events) because there is more stigma towards illnesses like schizophrenia/bipolar so I suspect more people with those conditions are cautious about their illness becoming what they are best known for.

  4. Janice Clark (@janiceclarkNE) 30 October 2015 at 7:39 pm #

    I have just found this blog, and I’m so pleased to see these issues being discussed. I have been sectioned 5 times (and freed from PICU at tribunal) and been given many more than that number of diagnoses, none of which I accept…although it is clear I have a ‘mental health’ disability by the legal definition and this I do accept. I do respect your call to privacy ‘Sectioned”, but I am somewhat concerned about the idea of people appearing behind masks to protect their identity but representing the lived experience voice. I feel any debate would focus on why you were wearing a mask rather than the planned debate. Maybe you should focus on sourcing someone who is willing to show themselves and put themselves ‘in the firing line’. I have very similar views to you. Count me in as a volunteer! I met Sir Simon Wessely recently and had an extremely interesting debate with him. I would welcome another opportunity to raise awareness of coercive and unhelpful practices in mental health care and treatment especially regarding detained patients. Indeed I heard Sir Simon refer to ‘legal’ coercion in psychiatric care when he addressed Public Health employees at the Sage, Gateshead earlier this year so it’s good to hear him recognising it goes on….although I can’t imagine he understands the extent. That’s a start, though, don’t you think?

Trackbacks/Pingbacks

  1. Banned by the BMJ | Sectioned - 29 October 2015

    […] I wrote in this piece, it seems that, on the one hand, professionals want to be seen to be listening to diverse voices; […]

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