The following is the text of The Marion Beeforth Memorial Lecture ‘The future of mental health is as yet unwritten’ delivered by Mark Brown to the 18th Annual Carer User Education Mental Health Conference on 5th April 2017 at The University of Brighton Faculty of Health and Social Sciences.
I’ve been doing mental health stuff for over a decade. I started off by inventing a mental health magazine written by people with mental health difficulties, for people with mental health difficulties. It was called One in Four. We did it for seven years. It nearly killed us. Some people liked it. Some people didn’t. From there I ended up doing lots of different mental health related things and I got to see a lot of what happens in mental health.
So, I have a confession to make: I want to believe in the future for mental health. And that’s what I want to talk to you about today. What makes the future in mental health happen? Who gets to decide? What might we expect?
We are always present as the future happens. We just don’t notice it. It’s happening now. By the time I finish this speech the world will be different in millions and millions of ways to when I began. In mental health we can often be fooled into thinking that things have always been this way and will always be this way in future.
The mental health systems we have now are not the same as they were twenty years ago. They’re not the same as they will be in twenty years. Things change. Often things that we thought would turn out one way turn out another way. Mental health is not outside of economics or politics or outside of broader social change. Mental health, as an area of activity, is about people and their lives. And people are impossible to divorce from the times they live in. What for one generation seems like a liberation might seem for the next a new form of oppression – ‘It was meant to be great but it’s horrible’.
Over the course of this lecture I’m going to to look at our present, then at our possible futures and then then have a stab at working out how we might start to build the beginnings of some preferable ones.
I came to be doing mental health stuff because of my own experience of mental health difficulties. There was a time when I didn’t think I had a future. There are times where I still don’t. Living a life with mental health difficulty can rob us of our sense of the future; reduce to living from moment to agonising moment.
So that’s why I think the future is so important. To live in a big long now and to accept that nothing will ever be better is a kind of exquisite torture.
Levels of illness and distress are rising while all we have is the same old suggestions and the same diminishing pool of ideas. There isn’t a past to return to for mental health. Things were not better in the old days. We have to face the future.
The lack of attention paid to mental health has given me a permanent sore in the side of mouth where I bite my cheek in frustration. It feels like making the lives of people with mental health difficulties better is as much of a utopian dream as fully automated luxury communism or holidaying on Neptune.
Often experiencing mental health difficulties saps our hope, hollows our bones, makes everything seem impossible and insurmountable. Like rising damp or mildew, this lassitude afflicts our institutions and saps their will to make things better. Nothing will change, we just have to stop things getting worse. We’re losing the battle for a mental health future that we can make and influence.
In mental health we can’t see a line to the future. All we see are long days of struggle and even longer nights of doubt and terror where everything is like pushing a rock up a mountain.
The hardship and suffering of living with mental health difficulty can erase any vision of a better life or a better world. Our mental health services seem to constantly teeter on the brink of collapse; surviving from month to month like a family trying to make ends meet, stretching out the final pounds in the bank at the end of the month in tight-lipped desperation.
The international symbol for improving the lives of people with mental health difficulties might as well be a shrug and a ‘dunno’. Many of the breakthroughs made in medication, oversold as they might have been, are already decades old. There are few new approaches on the immediate horizon because no one funds research and new thinking. What does exist is done on a shoestring.
People with a diagnosis of schizophrenia run the risk of dying 20 years earlier than the average British person without a diagnosis of schizophrenia and we don’t know what to do about it.
Psychological problems during childhood can lead to 25% lower earnings by age 50. Being unwell young can have an impact on the rest of your life and we don’t know what to do about that either.
So why doesn’t it seem like a crisis? Mental illness and mental health difficulty are glacial apocalypses. Few people die immediately; societies don’t collapse. There’s never one dramatic moment where society looks around itself and says ‘We never thought it would get this bad. Now’s the time to sort things out.’
The future is slow in mental health because, when it comes to it, people don’t put their money up. There’s always something more pressing, more important to spend it on. Every year that we neglect spending on mental health is another year we waste. We don’t know where the answers to some of the challenges we face every day with our mental health difficulties might be found; but without the funding of a broad range of research, exploration and doing things they’ll remain forever hidden.
So how might we think about the future? How might we begin to write it?
Futurists or futurologists are people who have the job of making guesses about what the future might be like. They usually do this by studying the present and trying to discern which way things are going. I’m not a futurist, but my time spent doing mental health stuff has given me the opportunity to look pretty hard at the present world and the way it does or doesn’t help people have the lives that they should reasonably expect.
Futurists often use a relatively simple way of trying to understand what the future might hold so they can make better guesses. They deal in three kinds of futures: probable, possible and preferable.
Probable futures
Probable futures are the futures that seem likely to happen if nothing major changes from now, they’re about extrapolating from present events. They’re the futures that are like now, but morer. In mental health, those futures don’t look very rosy.
I was recently speaking at an event about mental health and digital technology. I told the audience:
“We are in the middle of the biggest roll back of public spending in generations. In the form of brexit we’re embarking on the biggest experiment in leaping into an economic and geopolitical unknown that our country has seen in at least a lifetime.
“In mental health we can often assume that the world we see around us will always look much the same as it does. That institutions like this one we’re sitting in will always be here. That there will always be an NHS. Always be social care. Always be human rights. Always be helplines. Always be homes and jobs and opportunities. I think right now we can assume no such thing.
“This might sound alarmist, but in mental health we have always been too complacent, too cautious and too ready to accept that things will turn out all right contrary to what we know and we see every day. Life for people with severe and enduring mental health difficulties has been getting worse.
“That is what makes our job in mental health all the more important and desperate… In much of the adult mental health world our possibilities are plateauing, either because we have gotten everything we can out of a particular technique, idea, practice or treatment; or because public and political will to provide the resources to fully use something to change people’s lives has flatlined. There is nothing traditional on the horizon that will save us from failing people with mental health difficulties in worse and more painful ways in future than we are today.”
So, in England at least, we are looking at a probable future where there is less funding for the NHS, less funding for local authorities, a possible recession on the horizon and a continued squeeze upon the Welfare State and the benefits to which people are entitled. More broadly, we’re looking at what might be a period of new instability. We might think that things won’t change overnight, but sometimes things do. Brexit, Trump, broader geopolitics, climate change. Generally it’s easier to see what might turn out badly when you’re already seeing it turn out badly. The probable future in mental health is that things will be a bit like they are now, but probably a bit worse. There may be rays of sunshine, a windfall here, an unexpected win there, but generally speaking the direction that we’re going is that for people with severe and enduring mental health difficulties life has a chance of getting a bit worse.
It’s not all doom and gloom though. We find ourselves at an interesting time in relations to public and governmental attitudes toward mental health. Nearly a decade of concerted work, much of it funded by the coalition government and beyond through national campaigns like Time to Change, has driven mental health up the agenda as a social concern. The message that people with mental health difficulties should not be discriminated against has stuck.
This gap between public goodwill and detailed knowledge makes mental health the perfect area for a politician who wishes to be seen to be doing unequivocal good. People with mental health difficulties are the new innocent and untainted victims. Or at least the right sort of people with mental health difficulties are. Where once we may have judged the goodness of our society by our behaviour toward recent migrants or to those with whom we did not share political or religious ideas, now in this age of polarisation it has been harder to find victims to help that do not tread on the political sensibilities of one regressive group or another. At the moment, people with mental health difficulties are those people, sort of.
Once the go-to group for governments wishing to earn humanity points was people with cancer; but it’s difficult to make policy pledges about cancer without it costing the Treasury a lot of money. Mental health, on the other hand, is often embarrassingly grateful for even the smallest of crumbs from the top table.
The idealised vision of people with mental health difficulties; quiet, tragic figures wilting for want of a course of CBT or a mental health first aid course in their school has created a kind of victorian urchin analogue; a group of people you can offer a tiny sliver of comfort to and then bask in the glow of their ‘god bless you sir’’s; convinced in your heart that you are both caring and kind.
Conservative social ideas have often been uncomfortable about disruptive or ungrateful beneficiaries. While those who are born with disabilities, or who are unwell from childhood often win the hearts of conservative policy makers; those who acquire their challenges later in life are often considered to be more suspect; somehow less pure in their neediness. Adults with severe mental health difficulties are often people who have had and, currently have, complicated lives where they are not so obviously victims. This often means that they are treated with a lack of care, subject to control rather than nurturance and made to carry with them a sense that somehow society does not know how to fit them (us) in.
But, the suggestion is that this interest in mental health will remain on the agenda for at least the immediate future, though whether it will translate in genuine change is another question. To the general public not immersed to any great degree in the detail of what kind of things might actually be good or needed by people with mental health difficulties an extra anything for mental health is seen as a revelatory step forwards. What isn’t happening so much is people without mental health difficulties actually listening to people who do about what they (we) want to happen.
And that’s where we come in, though it might not be something that comes naturally to us.
Possible futures
Our second kind of future is the possible future. Possible futures are the kind of futures you explore by being playful. Sometimes they’re explored through stories, or films, or art or imagination. They’re the futures where we look at how bad, how good, how weird the future might be. They’re the versions of the future where we explore our desires or look at how one particular thing might change everything. It’s the jetpacks and flying cars future, if you like. The future that we try on to see how it makes us feel. Possible futures are where we try on our ‘what-ifs’ for size.
I went to the Beyond Bedlam exhibition at the Wellcome Collection in London last year. It told, in some detail, the story of the old Bethlem hospital and by extension a sort of history of the treatment of mental health in England. It tried to be very fair, to stress that people with mental health difficulties are, you know, people, but it couldn’t quite escape from telling the story of mental health through the institutions and services we build to provide treatment rather than through the lives of people.. All the way through I was wondering: Are there other stories we could tell about the history of mental ill-health and mental distress? Of course there are. But what might the organising principle be? What would happen if we removed psychiatric treatment from being the sun at the centre of the astrolabe of discussion? Would all of the different moons and planets of ideas and experiences fly off in eccentric spirals and loops, a terrible disordered mess? Or would we find new ways to organise the story or new stories to tell?
This is where our thinking about mental health in general gets stuck, too. We end up assuming that the existing mental health services that we see are like a kind of unchanging, unshifting map where nothing will ever change and nothing will ever move. This means we can get trapped in the process of envisaging the future as being much like now but where everything works. We get stuck in the probable future. What we need to be able to do is roam further in our thinking, to do more exploring and to stop ourselves from automatically limiting ourselves to what looks like now.
Mental health isn’t just about mental health services. As people with mental health difficulties we know that we carry our difficulties with us, that everything that touches us interacts with those difficulties. Services might be nine to five, but we’re us 24/7, regardless of what we’re doing
A few years ago I was at an event with a number of mental health folks from across the world looking at what the future for mental health might be. I got all excited and started to throw out all manner of weird ideas like ‘what would happen if we removed referral criteria for mental health services? What if we put a use by date on mental health services so that every five years we reviewed them to see if they were still doing what they were supposed to and if they weren’t we closed them down? How will we provide mental health services in a world where people move around more, possibly from country to country? How will we provide mental health services for entire communities that have been traumatised by war or discrimination or violence?’
What was interesting was the people most directly involved in running and managing existing services found it most difficult to play with these ideas, these possible futures. They were like ‘nope, no, that wouldn’t work, that’s impossible’. It was as if they were so good at managing the present they couldn’t even feel comfortable playing with the possible future. They just couldn’t play.
And play is what it’s all about. I do lot of work these days around digital technology like apps and devices and mental health. I mainly got into that because it felt like the area where there was the most room for play and for trying out new things. It felt like an area where it was easier to look at possible futures because it felt new.
Digital technologies are one of the areas where there are new frontiers to be explored. Digital technology creates hybrids: it takes what we know in one area and finds new ways of doing it. Technology as helper, not as threat. As such, digital technology is one of our best bets for better mental health because we already know a lot about mental health. And other people know a lot about tech and also make a lot of money out of getting it right. So, we’re halfway there. The direction of travel is that there will be more breakthroughs and research in digital technology each year, which means if we carve out a space for mental health in that we will reap the benefits of a direction of innovation that is already unfolding.
People with mental health difficulties and people who support us and provide us services are often very afraid of new technology, fearing that it will be a new way for things to be done to us rather than done for us. It’s a reasonable fear, given how much historically has been done to us rather than for us without any digital technology being involved at all.
In any sort of consideration of a possible future you are always balancing the questions of ‘could we do it now or in the future?’ with ‘should we do it now or in the future?’ This is why it important to keep your eyes open to innovations and to weigh them up in your head: What would it be like if that happened? Would it be good or bad for us? Would it be desirable? What would we gain and what would we lose?’
There’s some great examples of this. People have been working on meds that know if they’ve been taken or not. They have a little microchip that can tell whether the medication has been swallowed. That might be awesome if you really need reminding, but could be terrible if it was used to check up on you say, to make sure that you were taking your meds. What if your employer got that information? What if your benefits depended on you taking your meds? It could be a very heaven or a merry hell.
Another example might be creating very tailored medications. It’s theoretically possible to monitor using a smartphone exactly what kinds of effects a medication is having on you in real time. That could be fed back and you could put together a dosage is that is tailored specifically to you.
We could develop ways we could pre-agree that you might need to stay somewhere safe for a few days if you need. Somewhere that isn’t hospital, somewhere you could just book yourself into if you need to without having to get to crisis point.
We could if we wanted to each become our own little data mine, choosing to kit ourselves out with smartphones and various apps and sensors and record as much data as we could about our health and activities, like how much we sleep or our heart rate and then choose to contribute that to organisations who would use the data to better inform knowledge about the particular challenges we face. So, instead of researchers trying to test hypothesis about things by involving us in trials, we could be making our own data and then saying ‘ok, make use of this.’
At a more basic level, we could design a benefits system that works better for people with mental health difficulties that makes it easier to move on and off benefits and in and out of work more flexibly. We could, if we wanted to, lobby for a law that makes sure no person ever slips into poverty because of their mental health difficulties. We could create specific environments and supports for people with specific needs. I love that some gig venues are building in quiet spaces to support people with autism, so if they want to they can get away from stuff for a few minutes before going back to the dancefloor or moshpit. Imagine doing the same kind of designing places in for people with anxiety, or people who hear voices or people who have flashbacks.
As long as we can define a need or desire, we can play with ideas for the future as much as we want. As long as we think: what do I want the future to be like?
In 2013, The World Health Organisation published a paper called Investing in mental health: Evidence for action, which they described as examining “potential reasons for apparent contradiction between cherished human values and observed social actions.” What the WHO was interested in was the fact that despite the evidence being there that investing in mental health, governments often don’t do it. They say that they believe in stuff and make all the right noises but when it comes to it, they just don’t stump up the cash. One of the barriers the authors identified to getting more to happen in mental health was “Low expressed demand/advocacy for better services” What that means is that not enough people expressed strongly the belief that a better world was possible for people with mental health difficulties.
And that’s where all of us come in: we can do the dreaming, we can do the thinking and trying out of possible futures. That’s our mission, or duty even: to picture that better world for people with mental health difficulties and to be brave about it. To think of where we want to get to with imagination. There’s an old Situationist slogan that goes ‘Be reasonable: demand the impossible’. In our process of exploring possible futures that’s what we need to be doing so that we can better see the gap between where we are and where we want to be. And that’s something we have to do as people, not as institutions.
If there’s one thing that my time doing mental health stuff has taught me it’s that people have different needs and people have different desires and that at the moment we aren’t very good at meeting either those needs or those desires very well. We try to design things that work for the most amount of people but that just means that a lot of us don’t get very much of what we want. Some of us a desperate for more treatment. Some of us a desperate to have less. Some of us really want to have more people to talk to about what’s troubling us and some of us would rather send a text. Some of us want meds that work and others of us want other things that work instead. Sometimes it will be mental health services that are the appropriate vehicle for delivering some of our possible futures and other times mental health services would be the absolute worst people to make them happen.
Preferable Futures
So, if we’ve done the imagining, what next? This leaves us the final kind of futures that futurologist deal with: preferable futures. Preferable futures are the futures that are somewhere between the probable futures and the possible ones. Preferable futures are the ones that we look at and think ‘that’s where we’re trying to get to’. Preferable futures are the ones that we try to bring about by making decisions and taking actions now, bending the path of the future further towards where we want the future to be and away from the things we think will happen if we don’t do anything and just let events unfold. A preferable future is the one you get to by playing through a possible future and playing through the probable one and thinking ‘how do we get closer to what we want to happen, rather than what will happen anyway’.
Preferable futures are the way that we begin the process of making sure that the future doesn’t just happen to us. Because the thing about the future is that it’s going to happen whether we try to opt out of it happening or not. It’s happening now, so it’s up to us to do that dreaming and thinking and playing and examining and analysing so that we can begin to influence it. A preferable future is one that you start working towards, or one that you convince other people is worth working towards.
So, look at the probable future, look at the possible futures and then decide on the preferred future and start the process of working out how to get that to happen. Simple. Or not.
I know I’m making it sound easy, but I actually know it’s really hard, especially when we have experience of mental health difficulties. As people with mental health difficulties sometimes the hardest thing to do can be to dream of better and to find ways to make it happen.
As people experiencing mental health difficulty and distress we are socialised to be ashamed of our failures and our malfunctions. We internalise our fuck ups, paint the walls inside of our heads with never-drying persecutory graffiti. We do not need police to to tell us what we should do because those cops are stationed eternally within ourselves. Though some of us won’t escape the police outside ourselves either. With mental health we are trained to formulate the enemy as ourselves. Our beautiful, magnificent, terrifying broken selves. We turn into incarnate apologies; walking talking IOUs to society. Damaged goods, we every day feel our distance from the shining path of productivity and growth. Each of us marooned on an island of one; isolated by an ocean of self judgement.
In mental health we have yet to go through the political revolution that Disabled people went through in defining exactly how those without physical impairments made life impossible for those that do. We know that many things are wrong. We know so much in the world does not work well for us yet we still find it difficult to name our enemy and turn our discomforts into demands. The question is not why we are broken, but why no one cares enough to change the things that break us still. To come to a similar moment we must analyse where we are and then we must identify what keeps us there. If the hopes and dreams of people with mental health difficulties are a force, there is an equal and stronger force that pushes against them.
We are trained to see our mental health difficulty as what we take from other people, but never trained to see it in terms of what the indifference of others takes from us, our families, our lives and our communities. We feel embarrassed, guilt flushing our faces at our anger, as if hoping that things could be different is somehow a childish tantrum, like shaking a fist at a thunderstorm or shouting at the sea as it rolls onto the beach.We accept that mental distress is a problem situated within us. We feel that it is adult and mature to make ourselves responsible for our own inability to find our equilibrium. We feel like we must accept the endings, must accept the loss, must accept the never weres and might have beens. But we do not. We should not. If we accept this version of realism we will never conceive of changes big enough to turn into demands; will never conceive of our situation as anything more than personal misfortune. We will actively fight against the possibility of collective change.
We shouldn’t have to make the choice between things being better in the present and things being better in the future. That’s a false choice born from forever being starved of funds and resources: we deserve both. The next breakthrough might come in the most unexpected place or through the funding of research or activity so speculative that its immediate application to day-to-day life seems unclear.
We must fight the view that Mental health difficulty is an individual tragedy; resolved through individual action or inescapable. This is blaming a worn out cog for not sharpening its own teeth, railing against a seed for not sprouting in a soil that is barren; admonishing each individual brick in turn for its failure to prevent the collapse of a house on a cliff as it slides into the sea.
For us to be everything we can be we must learn to demand what we need to be that best version of ourselves. If we experience mental health difficulty we have been dealt a shit hand, sometimes one that runs the risk of erasing our sense of self and agency completely. To overcome yourself you will need additional help, support and understanding from others. It is impossible to untie a knot when you are at its centre. Social organisation is the means by which we extend our lifespans, pool our resources, create collectively what would not be possible in one lifetime with one brain and one body. Instead of extending that social organisation to afford the help and support needed by those experiencing distress, disorientation and mental crisis, collectively our society draws arbitrary lines of convention and practice saying ‘society will go this far in assisting, but no further’. We must begin to ask those who do not experience mental distress: what are you prepared to give up so that your fellow humans might in enjoy the same pleasures you do?
The reality of mental health difficulty is this: if you have a mental health difficulty you are more likely to end up poor. If you have a mental health difficulty you are more likely to end up dead sooner. If you have a mental health difficulty you are more likely to have poor physical health. If you have a mental health difficulty you are more likely to end up estranged from family, to never taste love, to never find a comfortable home. The years spent unwell takes money from your pocket and years from your future. These are the result of social organisation, not of individual illness. These facts result from decisions about the limits to put upon help offered and the amount of resources to be allotted to that help. The amount of help and support offered those experiencing mental distress is not a result of how much people want to help but how much help our dominant way of organising society will tolerate being given to those in need.
It is not our fault that we need different things. Our self respect must be based upon being the best we can be and making it clear that we matter.
I am unlucky with my mental health, but far luckier than many. I have some of what I need and am an able advocate for myself. No person should fall into poverty or live in poverty because of their mental distress. No person should settle for a horrible half life when a life fully lived could be theirs. No one should suffer alone when there could be support and community. It’s up to us to envision a future for mental health that is not limited by the logic of those who would rather we did not inconvenience them. No one should die when they should have thrived. People being nicer will solve nothing if underlying assumptions about the way the world should work remain unchallenged.
We need research. We need exploration. We need doing things. We need new alliances between people who have desires and dreams and wishes and those who can help make them happen. We need to work out what future we actually want. We need hope.
We need to find ways that we can dream and scheme together, find ways that we can try stuff out. Experiment, explore. Ways that we can work together whether we experience mental health difficulties or we just really want to be an ally and an accomplice in making a better world.
We need to be writing the future of mental health now.
Look around you: without spending on mental health research; without new thinking; without new knowledge this is all we’ll have – a world and treatments that aren’t good enough.
We need to make the future happen for mental health now. Because it’s already too late.
So get out there and start dream and doing and making a future we’d all prefer.
Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter.