Mental health activism: who speaks and who listens?

The following is the extended text of a talk given to a session on activism and empowerment in mental health by Mark Brown at the Rights for Life: supporting Recovery and Ending Discrimination conference in Glasgow on 2nd June 2015.

In mental health in the UK we have for a couple of decades made the mistake of assuming mental health support and the NHS are synonymous; as if the only way to change the lives of people with mental health difficulties is to ‘fix’ NHS mental health services.

I’m not sure that this is the case.  We stand here, having this discussion because of the work of people with mental health difficulties in the past.  The people who forced change.  The people who didn’t accept that crap was good enough.  But we’re a long way from finished in that process.  I think events like this show we have the opportunity to move towards a new relationship between mental health organisations and individuals. But I think there’s some stuff we’ll have to talk about first.

I think that individuals often have a crisis of legitimacy when it comes to raising issues around mental health care and support.  I think the issue of legitimacy looms large over mental health activism as a whole: who has the right to surface problems and who is likely to be listened to when they do so?  If you get a group of people with mental health difficulties together in room together you’ll get a strong picture of what isn’t working too well in the way that services work, and more broadly than that, what isn’t working too well in society at large.  When you get folks together they pretty soon work out together what’s really doing their nuts in.  Different groups of folks will identify different things.  There are channels of legitimacy in mental health as there are in all areas of social action.  There are processes through which ideas or experiences pass so that they become accepted. There’s always things that ‘we’ – people with mental health difficulties – know but which take years to make it into the discourse about mental health.  Why is this?  I’m interested in how people get things to happen.

I find myself being very sceptical about the power for change of engagement exercises; mainly because I know that you often give away some of your power as citizen when you enter through the door marked service-user.  A while ago I coined the phrase ‘to be beneficiaried’ which referred to a experience many of us with mental health difficulties have when we move into the realm of influencing and trying to make change happen.  As I put it back in 2012:

“ one of the challenges that the current generation of people with mental health difficulties face is that having come to doing stuff as ‘service users’ or ‘people with mental health difficulties’ we find it very difficult to escape from that pigeon hole.

I have coined a verb: to beneficiary or to be beneficiaried. This describes the chilling moment in a meeting or professional situation when someone changes their attitude towards you after you disclose that you experience mental health difficulties yourself; shifting you from professional peer, colleague or partner in delivering a service to beneficiary of that service. You can feel it, the withdrawal of fellow feeling and a retreat into professional well meaning, the defensive barriers rising…”

I think we have to be realistic about what is on the table from ‘involvement opportunities’.

You’ll often see them described as ‘giving people a voice’.  People already have a voice, it’s just that they can’t get into the right position for it to be recognised and heard.

Horizontal not always vertical

I’ve noticed that we are still very often orientated toward the idea that decision makers do not know the effect of the policy decisions that they make.

We think that if we take a petition to the king detailing all of our difficulties, as peasants did when revolting, setting out how things are on the ground, the decision makers will slap their foreheads and look at each other and say ‘Oh no! I didn’t realise that it was this bad.  My god, what have we been playing at. I thought WE were the good guys? OMG!’

I think that often, in our wish to start campaigns that will rock the establishment we’ve actually forgotten that we also need to communicate with our fellows and our peers.  We’ve forgotten that we need to be building our connections, supporting each other and passing on information about how to do things.  We need to focus on the horizontal as much as the vertical.  We need to have ‘boots on the ground’.  We need to make sure that we can get the resources to the right people at the right time to do the right thing.   The chain has sometimes seemed to be: start a campaign on your own about a bad thing; hope a charity takes notice; when the charity takes notice they ask everyone else to chip in their experience of the bad thing; all of the bad things get parcelled together in a report or a twitter campaign and then sent off to ‘those in power’.

I think we’ve fallen into the trap of thinking that the undeniable cathartic power of telling our personal story of what didn’t work for us (or what did) serves the same purpose as exerting political pressure.  It can, if you have the right story in the right place at the right time, but it’s more complicated than that.

Sure, there have been cases that have changed the world.  But they changed the world not because they went straight to the top.  They changed the world because those ‘at the top’ were afraid of the responses of enough people they deemed to be important.  The hard hitting expose is meant to cement in the minds firstly of noisy figures like columnists and then beyond that the general public that there is a terrible thing about which something must be done. It is not about providing government with evidence of how bad things are but providing people who aren’t the government with the idea that the government is failing in some significant way. So that the government worries enough to change things.

We’ve entered a period where anti stigma work has been more successful than ever in raising the profile of mental health difficulty as an issue amongst the general public.  We used to complain that no one cared.  We can’t say that now.  People do care.  But moving from people caring to people as the electorate exerting pressure on policymakers has so far eluded us.   It is entirely possible to say that you absolutely love people with mental health difficulties whilst also implementing policies that make their lives worse. It’s a bit like the defence ‘But I can’t possibly be racist, I love Beyonce. And Stevie Wonder. And Lenny Henry.”

A human rights based approach

In 2013 The World Health Organisation (WHO) published Investing in mental health: Evidence for action, an excellent paper which in their own description examines: “potential reasons for apparent contradiction between cherished human values and observed social actions.” The paper examines the case for governments across the world to invest in mental health by acting upon avoidable risks, providing essential care and enforcing fundamental rights.  It also examines why governments do not make these investments despite convincing evidence to encourage them.  As the report has it; there are a “number of barriers that continue to influence collective values and decision-making – including negative cultural attitudes towards mental illness and a predominant emphasis on the creation or retention of wealth (rather than the promotion of societal well-being).”

The UK, even with our currently falling level of investment, terrifyingly, still has one of the best funded systems of social support for people with mental health difficulties in the world.  The report states: “ there is ample international evidence that mental disorders are disproportionately present among the poor, either as a result of a drift by those with mental health problems towards more socially disadvantaged circumstances (due to impaired levels of psychological or social functioning) or because of greater exposure to adverse life events among the poor.”

As you may have picked up; the WHO has a pretty strong attachment to a human-rights based approach to mental health.  Without mental health , it is impossible for people to claim other fundamental human rights.   The WHO feel there are a number of key actions, not limited to treatment, requiring state intervention to promote mental health:

  • provide better information, awareness and  education about mental health and illness;

  • provide better (and more) health and social care services for currently underserved populations with unmet needs;

  • provide better social and financial protection for persons with mental disorders, particularly those in socially disadvantaged groups;

  • provide better legislative protection and social support for persons, families and communities adversely affected by mental disorders.

Democratic governments maintain their position by remaining popular. UK government maintains its ability to make things happen by gaining the support of the electorate and by gaining agreement of elected representatives to make, amend or remove laws; set taxes; and decide budgets.  Centrally controlled spending can be centrally controlled.  Devolved spending, such as spending within the current NHS and Local Government budgets can be mandated or incentivised.  It’s noticeable that the party (in England at least) most committed to mental health was the one wiped out at the last general election.

The WHO report suggests that one of the reasons why governments do not invest in mental health is because there is always something more important to spend money on.

People do not usually die from mental health difficulties in large, definite numbers in a way that pricks the public conscience.  If someone loses their job as a result of a mental health difficulty and becomes homeless that is seen as a housing problem, not a mental health one.

The WHO suggest that while governments may be fully aware of the individual and community costs of unmet mental health need, they are also aware that to pay for meeting that need would mean removing funds from another potentially more valued activity.  So, the decision is made to underfund mental health on the basis that other areas of spending are considered to be more important either to government or to voters.

In other words: mental health? Tough. Why should mental health come top of the list when there are a number of other competing claims on public funds?

The WHO also suggest that negative perceptions of mental illness (stigma) influences decisions as well as “Low expressed demand/advocacy for better services”.  There is, in other words, a lack of political will and political pressure to spend on mental health other than in the ways already decided upon.

Outside scrutiny and outside pressure

This is why outside scrutiny and outside pressure is terribly important.  In August 2013, Mind in England got the ball rolling on a campaign about crisis care that also took in the issue of facedown restraint.  “Data secured by Mind under the Freedom of Information Act reveals that at least 3,439 patients in England were restrained in a face down position in 2011-12, despite the increased risk of death from this kind of restraint.”  They only got that data by carrying out Freedom of Information requests.  Not all trusts recorded face down restraint.  They found that two trusts – Northumberland, Tyne and Wear NHS Foundation Trust and Southern Health NHS Foundation Trust – were responsible for half of the incidents of face down restraint they were told about.  There was a possibility that either these trusts were just more scrupulous in recording such incidents.  Without outside pressure, there is little incentive to reveal information that might prove difficult to explain.  In mental health there are few ‘never events’; events within NHS services that automatically trigger an investigation.  In some senses, mental health still languishes in a shady space beyond strong outside scrutiny where individuals may bring complaints about individual services, but are very often shunted off into intimidating and bewildering complaint channels and where there is often little chance of catching a systemic failure.

One of the problems is that there is a very weak press in mental health, and that press has been traditional led by the agenda of mental health charities and mental health professional bodies like the Royal Colleges.  But things are changing.

New voices, new challenges

Once, before we all started blogging, tweeting, facebooking and organising the main voices about mental health were the voices of either medical professionals, well meaning (or otherwise) politicians and major charities.  They were mostly voices that claimed to speak on our behalf.  Now the internet and access to the platforms it creates for sharing, discussing, organising and making things happen has challenged that in fundamental ways.

Where once we might have been happy to contribute to a service user involvement opportunity or to take part in a consultation, more and more of us are making a space where our voices, opinions and, as importantly, our actions can be seen and heard.  We’re looking to do ‘something’.

Where once there were a few voices lucky enough to make it on telly or into the paper, now there are thousands in the public sphere across social media, all reporting from the frontline of life with a mental health difficulty.

That’s obviously a wonderful thing and a step forward.  It does, however, present us with some challenges, too.  I think we’re on the cusp of the most amazing period in mental health activism history, where big organisations can provide the support for small organisations and individuals to take forward new questions and new ideas.

If, that is, we can resist tearing each other apart.

Being comfortable in disagreement

As individual voices speaking from our own experiences become more numerous, so too do the range of experiences and ideas that are available for debate and comment.  We’ve been so used to other people speaking for us that we sometimes forget that someone writing a blog, adding a comment or chatting on twitter or writing for a magazine isn’t a person speaking from a position of authority but actually just another person with mental health difficulties sharing their views or experience.  So we go in all guns blazing and start attacking people who are more similar to us than they are different.

Maybe the mental health movement isn’t really one movement at all?  Some people desperately want services to be more involved in their lives while other people are desperate to escape from them all together.

People who experience schizophrenia have different experiences to people with depression. Older people have different experiences from younger people. What happens in Devon isn’t neccessarily what happens in Dorset, or Glasgow, or New Orleans. Beyond those differences who you are influences how mental health difficulty impacts on your world.  Your economic circumstances, your religious or family background, your political beliefs; all these things will shape how you experience mental health difficulty and how you feel about it.

As campaigners, bloggers and activists we have to make sure that we are enabling a wider debate to take place while also making sure that we can find ways of moving forward.  We have to respect different opinions and experiences and find common ground whilst also remembering that no one can ever produce something that will make happen everything that every individual thinks should happen.  We have to use our own experiences as the fire that drives us, not the standard by which we measure others authenticity or trustworthiness.

A political movement is one where lots of different experiences choose to focus on trying to get particular things to happen.  They don’t all have to have had exactly the same experiences or even have all the same ideas.  They move forward on what they all agree upon.

Even if we don’t agree with them, it’s always better to extend charity and respect, otherwise we’ll use up all of our piss and vinegar fighting with each other and we’ll have nothing left over with which to change the world.

If we’ve spent ages battling big organisations and huge discriminatory ideas, fighting for justice where none has been forthcoming, we can, often by accident, turn the same tools and weapons against someone who really has no more power or influence than us.

A different experience or opinion is taken as an attempt to delete or negate your opinion – ‘If you are different from me, you are trying to erase me’.  We end up turning our peers into our enemies by assuming their different interests are an attempt to destroy us, rather than just a different focus.  We make people that are more like us than not into ‘the enemy’.

When it comes to an area as diverse as mental health what we need is more acceptance of different views and opinions, not less.  We can listen to each other without necessarily agreeing.  We can talk about different points of view without betraying our own.  We can promote people taking different approaches even if they aren’t the approaches we could take.

We can create a climate where big ideas are debated and minority voices are heard rather than just being ‘included’ by tokenism.  I’d rather have ten black mental health bloggers than ten people who aren’t black adding “and black people have different experiences of services” at the end of every post they make about their own experiences of mental health services.

None of us can do everything or focus on everything all at once.  We have to look at how we can make resources, knowledge and support flow to people who are under-represented so that they can represent themselves, can make things happen for themselves or better guide what other do on our behalf rather than graciously extending a hand and ‘giving them a voice’ in structures that don’t work for them.

After all, how are we expecting to make the argument that society should be more accepting of us and our difference if we can’t even manage to accept each other?  Promote discussion, value difference, work to find common ground or accept that your struggle and my struggle might not actually be the same struggle at all,  have respect, kindness and charity.

We should be doing everything that we can to create spaces for people to speak for themselves.   It’s not just about speaking truth to power.  It’s about learning how to talk and how to listen to each other, too.

And I think that’s what is already happening.

Well, at least I hope so.

Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter

Portions of this speech originally appeared as part of a blog ‘Who speaks for whom in mental health?’ that appeared at Dawn Willis’ blog.

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