Let’s imagine what an empathic society might look like. It would be a society where people are fearlessly open about their lives, where they’re more intimate with one another in a culture where all sorts of people work together to solve not only political, economic and social problems, but psychological ones, too. From what I saw last week at Hello Digital, that’s the society that’s on offer if social media reaches it’s full potential.
But such a society seems a long way off for people with mental health problems. We live in a society where people are all too often discriminated against on the basis of their health, where widespread prejudice in official as well as informal settings is casually dismissed with what can easily lead to detrimental effects on the health of an already disempowered section of British society. How might you react and what implications could that have on your health if there was no way out of such an environment? Like it or not, in 2010, that’s the society we live in.
The solution could be for people to use social media to familiarize themselves with new people from diverse communities leading, perhaps, to better understanding and a common purpose: to improve one another’s lives. This may sound like an overly ambitious fantasy, but it’s already happening on some parts of the Internet. On Facebook and Twitter people are opening up their private lives like never before, with amazing results. Rather than being shunned and judged, they are usually supported and helped by their peers.
If social media is going to fulfill its potential, there’s clearly a lot of work to do but, judging from what’s happened since 2007’s Power of Information report and what’s said to be on the horizon, it’s work that could quite conceivably happen. If social media can, as was outlined last week, change how we make decisions, how open we are about ourselves and our institutions, how we interact and how our society functions, then it isn’t a great leap of faith to imagine these influences benefiting everyone, even those who are currently excluded.
I’ve been to three very different events since I moved to Birmingham to study social media and yet all of them – ‘Hyperlocal Govcamp’, ‘Hello Digital’ and ‘The Lost Voice of Mental Health in Birmingham’ – were all concerned with improving services for people. The former two looked at how this could happen with social media, whereas MyTime, the people behind ‘Lost Voice’, concentrated on direct involvement with some of those who are digitally and socially excluded: those who’ve had serious social and mental health issues.
The emphasis at these events was on how organizations can help people gain better access to improved services. However, the way people are being targeted for inclusion right now appears to throw up many of the same faces you’d expect to take part in community activities – people who, from the outset, aren’t as disconnected from their wider communities. If this doesn’t change, the real power of information may result in the tragic scenario where even the transformational power of social media is threatened by existing social structures that are going to be unwilling and perhaps unable to change for a while yet.
MyTime is a small social enterprise in Birmingham, run with a high proportion of service users in its management and care team. It uses a holistic approach in taking people, many of whom join the programme with severe mental health issues, and works with them to make improvements in their psychological and interpersonal functioning. MyTime’s methods and aims are not dissimilar to those who advocate social media as a panacea. Key phrases spring to mind: ‘empathy’, ‘a client-centred approach’, ‘empowerment’, ‘peer-to-peer support’, and so on. Such an approach is said to be beneficial not only to the clients and the organization, but also to the economy, with psychological therapy estimated to be a cost-effective approach to the financial demands psychiatric care has on the state.
A similar economic case can be made for the increasing use of social media. For example, if everyone was online, it would save the Government an estimated £900 million annually. And yet the poor, those with little education and people over 65 are not online as much as other sections of the population: better off people, younger people, healthier people. The challenge for digital inclusion, then, is to get the excluded involved so that existing inequalities don’t win out. There are signs that these fears may be groundless, though, with ample examples of people working on their own and in groups bringing about important changes in their lives and communities, of people offering peer-to-peer support, of getting their message across and engaging others. But, as yet, that isn’t really happening with the mental health community in Birmingham.
At this week’s Beyond 2010 conference in the city, the Government’s Chief Information Officer, John Suffolk, spoke of a ‘paradigm shift’, of things happening in the next ten years that would bring about the biggest changes we’ve ever seen, with implications for services, the economy and our well-being. And yet the third of people not online may miss out on these opportunities, which will effect how services are run. This should not be the case, since the debates around open data point to some interesting and relevant themes for mental health, like reaching out to people we may ordinarily not interact with in ways that offer peer-to-peer support.
Innovation, it’s said, starts with people, so while there are initiatives by Government to use technology to improve services, do we – the public – need to do more? These are our lives. Surely it would be foolish to wait for others to find solutions when the accessibility, the affordability and the sociability of social media give us the chance to make beneficial changes for ourselves and the people around us. Empathy enables people to come together. It breaks down barriers because it’s all about understanding. It’s based on good communication and can lead to better relationships.
As a vehicle for increasing empathy, social media seems ideal. But, while the emphasis of Hello Digital and the Hyperlocal Govcamp was on what organisations can do for people, little was said about what individuals can do with their own data to become more open themselves, about what we, as individuals and communities, can do to make social media work as it perhaps should. We could bring about closer ties so that not only do people hear about the issues, but that, because they’re close to them and can see their relevance for the wider society, they care about how those issues are dealt with.
My view is that we need to have more open government, more open data, more public and private sector organizations working with communities and people. But we need more than even this. We shouldn’t wait for others to improve things for us. We need to be more open and transparent about our personal lives to benefit fully from the social and psychological opportunities social media promises.
Admirable though MyTime’s work is in turning individual lives around, I saw little to suggest that they have a realistic and practicable answer to the question of how to engage the wider society and therefore tackle discrimination, which is surely a crucial step. At the moment, though, those with mental health conditions are not benefiting from what social media has to offer because they are not being reached by the people, like social media surgeons, who could help them get their message across to become active participants in this paradigm shift of technology. What may be needed is for both surgeons and the mental health community to both realize that they’re concerned with social and digital inclusion and that they both, therefore, could benefit from becoming involved with each another. MyTime wants to engage, but the only mention of social media during the day was to call for people to make use of The Guardian’s web site to complain about cutbacks in services.
This is too much like the bad old days, where you wrote to the editor of your local paper and got a polite response if you were lucky. No doubt people would get exposure of sorts, but the benefits of this approach would surely be buried in a mass of comments. Indeed, why rely on methods like this when the affordability and accessibility of social media make it possible for the mental health community to make their own sites, to build bridges with other communities and to engage more fully.
Organisations are often slow to change. MyTime, progressive as it is with its psychological work, is still behind the times with little knowledge or understanding of the potential of social media. For example, I asked for a video that had been presented during the day to post in this piece. One of the service users who’d worked on the project rejected this since ‘it wasn’t ready’. While it’s up to the organisation whether or not to release the video to a more general audience, this showed that, to bring about a strategy that would be in keeping with the spirit of Beyond 2010, they would need to realize just what the implications of social media could be. To hear ‘we’ve got our own site and we’ll put it there’ is not good enough, but that’s the way organizations have traditionally worked with the web and audiences (I must add that MyTime’s Managing Director did say I could have access to any materials, but the other comments show that this paradigm shift of technology isn’t anywhere near the top of their agenda).
That My Time’s web site, despite its use of social media tools, is more a one-way communication with the outside world than an involving conversation backs this up. Although there are, no doubt, more mentally ill people online than there once was, three years after the Power of Information report was published, the patterns of digital inclusion suggest that reaching those who are as socially excluded as those with mental health conditions is nearer, but still some way off.
So what of MyTime’s involvement on the web? Their site is quite static: although there’s a blog, there’s not much in the way of meaningful engagement. While it can be difficult to get people interested in mental health issues, the whole approach of the site is outdated and misguided in today’s world. For example, while there’s a link to Facebook, it merely points back to MyTime’s web site, not to a page or a group which could further attract and engage people. Additionally, there is no link to a Twitter account, and yet these are basic things which enable better feedback, iteration, and so on. A problem I find with trying to get people’s message across is that organisations like MyTime, while they do good work, tend to preach to the converted and suffer as a result.
An alternative approach would be to let people use social media to speak for themselves, to interact with other people, making use of what could be a different narrative than that framed by the organization. That way, we may even hear the voices of those who dropped out of MyTime’s therapeautic programme (a majority of those who initially took part). Many people with mental health issues have lived at the extremes of what it is to be human and yet, after clawing their way back to a life more ordinary, they can still be faced with shocking prejudice that threatens their well-being.
What’s more, some of these experiences can be at the hands of people who work in mental health – the very people charged with caring for the vulnerable. An effective approach to social media can be so important because it can bring people together so that they can highlight where things go wrong. You can’t implement a solution if you don’t know what the problem is, and for that to happen effectively, it pays to engage with people.
Donovan is a service user at MyTime. He has a story to tell and has extensively written about his experiences. He wants to set up a radio station to reach more people. While this is good in itself, it should only be part of the story, since there’s so much more people can do. But Donovan may not know where to go or what he could do to make the transition from service user easier. For Donovan, a conversation, rather than merely a piece to a mic, could expose him to people outside the confines of MyTime, peers who could build upon the initial work the organization does. A big part of social exclusion is bad relationships. Because better communication can lead to improvements here, surely anything that helps improve how we talk with one another has to be applauded.
But, still, little changes for the mentally ill. Michael Lilley, of MyTime, believes that ‘we need to have a revolution in mental health’. Remember the Government’s Chief Information Officer? Remember talk of a paradigm shift? Social media may well be the tool to bring about Lilley’s revolution, but he’s not aware of it. That’s a failure on his part, but it’s also a failure on the part of others who’ve failed to reach organisations like MyTime and their clients.
There is a need for good quality services which deal with people face-to-face, but with cutbacks threatening services similar to MyTown, the mental health community has a choice. It can wait for society to change or it can be part of that change in ways that are new, which don’t repeat the failures of past campaigns. We can either push our own agenda or join together to break out of our comfort zone, engaging with people from our wider communities and working towards tackling discrimination in our society. For that to happen, it takes more than a static web site. It takes involvement from individuals via the many online channels there are, not to mention the new ones that could be created, not to scare people off by telling our life stories when we first meet them, but to befriend people, then share information about our lives and the injustices many of us face.
Individuals need to be heard, but not at the expense of those who are less vocal, because that would be a piecemeal approach to the very real problem of social and digital exclusion and would threaten to create a new underclass. There are people who are trying to find ways to improve communities and services through social media and, to a certain extent, they’re starting to succeed. However, one of the most important aspects of these initiatives is feedback. Without much of a voice, those with mental health issues can’t be part of such processes, meaning another lost opportunity and services which may sideline these people.
Granted, many of those with mental health issues can be difficult to deal with, but there’s reasons for that which, ironically, are often contributed to by the very people who most vocally criticise the mentally ill. Meanwhile, former and current service users have often been exposed to restricted, toxically damaging environments, characterised by bad ideas of relating to the world, bad communication and bad relationships. This situation can be all they know, so it’s little wonder that they can present themselves in ways that other sections of society often find difficult. Part of the reason for this is that the mentally ill are rarely heard on their own terms.
Social media, then, offers a different approach: exposure to a wider community, the chance to communicate more effectively, improved relationships, greater acceptance of alternative viewpoints, the opportunity to think in healthier ways and the ability, in the face of all this, to search for effective new ways of doing things. Many mentally ill people can be unreliable, because of what MyTime calls ‘chaotic lives’, but these chaotic lives also need looking into. If we can use our collective, shared intelligence to highlight what goods and services to buy, if we can harness it to increase our knowledge and use it to learn more about where we live, surely we can use that shared intelligence to make improvements in our thinking towards people who are socially and digitally excluded.
However, as for the transformational potential of social media, even though there’s a lot of reasons to be optimistic, my experience of last week suggests that, for those with mental health conditions, now is not the time.