How a happy philosophy may be out of step with survivor experiences
I write as a supporter of the voluntary and charitable sector in Mental Health. Many survivors prefer voluntary sector services to formal services. Voluntary sector services are often more culturally attuned and user led. Their services are more understanding of different personal identities and equalities. They do not have powers to section, medicate or control. The voluntary sector is there when statutory services discharge long-term service users due to overwhelming demand from new referrals. There are numerous examples of truly user led and compassionate services including Self-Injury Support, Leeds User Led Crisis Service, Speak Up CIC and local Hearing Voices Groups. NSUN lead the way in capacity building and championing user voices.
There is direct action on social media led by coalitions of survivors, for example, the Stop SIM campaign, Recovery in the Bin (RITB) and Revolution LXP. Social action involves risk and courage for involved activists, many of whom will avoid public recognition because of danger to their jobs or benefits status if retaliatory actions are taken by authorities. I am not an activist and cannot do justice to grass roots and voluntary sector groups. This article is not meant to criticise the hard and underpaid work in this diverse sector but to provoke thought about how services need to listen to the needs of their recipients.
I want to focus on the apparent happiness mandate from many local mental health charities. It is likely the positive directive is linked to outcome measures and the hoops jumped through for statutory funding. The now complete shift to outcomes reporting is in line with the Recovery agenda. In most cases, survivors have not developed the measures to evidence their expected successful journeys. It is difficult for voluntary sector groups to seek funding for core services when money may only be available for new projects. Ongoing users may be a hindrance to outcomes linked funding, which prefers those who can move on after six months preferably to independence and employment. Demand for services is hitting charities, as it does relentlessly for statutory services, but practice in the voluntary sector starts to mirror the time-limited Recovery framework which RITB has campaigned against.
Before lockdown I visited a ‘crisis café’ occasionally. The ‘café’ would not admit people unless they were willing to fill in a paper questionnaire about how they were feeling and what led to their visit. At the end of the visit another questionnaire on the back of the form meant self-assessing how you felt after, and what services you avoided using that day due to the ‘café.’ I used to wonder how anyone in crisis could be expected to fill in two questionnaires. A one to one chat, limited to 15 minutes, was their sole service offer for three hours twice a week.
I fill in questionnaires over the phone every month when I speak to an employment adviser from a voluntary sector organisation. Regular reviews involve questions like whether I feel loved, have energy, feel useful and am showing an interest in other people. The questionnaire is a no argument condition of receiving support. I do not care at all if the score has gone up or down. It is difficult to give ‘real’ answers in case you lose the service if it is viewed not to work. You have a relationship with the worker who asks the questions which means you answer in a generous way.
Charities in the mental health voluntary sector adapted during the pandemic with online and phone support. A Zoom call cannot truly replace the chance to meet peers socially or share a meal. Many service users cannot afford the internet. The continued gap between meeting up and virtual help appears to have put more emphasis on social media messaging. Charities direct their time into social media pages which reflect positivity and wellbeing promotions.
My local charity’s facebook page publishes poetry most of which does not relate to mental health experience. There is a new Feel Good Friday poster on there every week. Positive cod psychology sentiments such as “happiness is not by chance but by choice” and “you do not find the happy life, YOU MAKE IT” are posted for likes. During lockdown another local charity encouraged sharing photos from ‘wellbeing walks’ despite the fact that exercise was limited by law.
Most social media posts from charities are about ‘reaching out’, asking for help or looking out for positives. It makes sense to try to keep spirits up but may feel invalidating to those who are bereaved or on low incomes. Happiness is at odds with the times we have been living through and it can feel infantilising and that we should be unaware of a world beyond our own ability to be mindful.
The messaging can feel false, as survivors we know that there is no help even if you do ask it unless you can pay for private therapy. This applies mostly where you have a long history of mental health problems and are ‘known to services’ which say they have done all they can. To repeat this ‘ask for help’ message is insensitive when organisations should learn from our rejections.
Where the voluntary sector promotes ‘wellbeing’ to the exclusion of recognising distress, there will be former members, perhaps those most in need, who disengage. Even before the pandemic, charities had moved away from social drop-ins. All groups must be labelled peer support though the needs of individuals in the group will be varied and negative discussion frowned upon. At the now virtual crisis café, it would not have been possible to mention my self-harm to other visitors, despite this being the reason I was there. Entry to voluntary sector support involves signing up to activity such as pottery classes, creative writing, art or cookery. It can feel like an Occupational Health department when these existed on psych wards decades ago.
Overall, no-one asked service users nationally if they either wanted to move to the activity model or go it alone. Choice was taken away from us. It can already feel as though you are ‘other’ in a society where people have partners, homes owned outright, children, education and jobs you missed out on from being distressed. Charities could exacerbate this sense of ‘other’ and social exclusion unless they respond to their members who continue to experience severe distress. In an unattainable happy community, there is no space for those who feel despair. This atmosphere drives distress underground, so it is more likely someone could turn to darker parts of the internet such as ‘suicide forums’.
Mental health experiences may not resolve and medication can lead to side effects which are a secondary impairment in themselves. We need safe spaces to talk about how these real issues affect us. Most of us know about the five ways to wellbeing or local walks so can try these in our own time if we find them of any benefit. When voluntary sector services are open, we need to be heard. I think of palliative care available to those with life-limiting conditions and the philosophy that helps patients to make the most of what life is left. Adopting palliative care approaches to those with ‘chronic’ and long-term suffering makes sense far more than flippant “don’t worry be happy” social media posts.
As survivors we need to talk to voluntary sector organisation managers and start discussions about how we reclaim the debate. We understand that funding is hard to secure and want this to change. There may be ways to still do the paperwork but have spaces which respond to what we really need. A group could still be called ‘women’s group’ but discuss living with traumatic stress. A ‘happiness group’ could be a cover for discussing what to do when we feel like we can never be content. We need to talk about iatrogenic damage. I have a diagnosis of Borderline Personality Disorder but have had to explain to charity workers what it means and why I reject it. There is a training need with many workers with posts low paid, unless they have their own experiences or learn from members. The voluntary sector should facilitate and not shy away from discussion which may not fit with a diagnostic manual.
It is already recognised that talking about suicide does not encourage someone to take their own life. If we start talking about realism then it is a relief and we do not have to be something we are not. It will not mean that we suddenly become negative and nihilistic. Individuals with mental health issues face huge challenges with poverty, loss, poor housing and unemployment. We cannot live in a Disney cartoon or pretend social injustice does not affect our peers.
The voluntary sector workers can help in practical ways, for example going with members to face to face benefit reviews or writing letters. They can get onto the mental health team which has rejected a referral again. They can listen without judgement and not set the agenda topic. Until we lower the volume of the happiness rhetoric our personal stories and needs are not being heard clearly.