|Are we building a culture based on disconnection? |
What can we do about this?
As this tide of loneliness increases, people are beginning to discover some of what David Pitonyak pointed out in 'Loneliness is the only real disability': In the absence of real, freely chosen relationships in people's lives, any benefits of health and social care interventions simply cannot be maintained.
Loneliness has huge effects on people's health, and has huge costs to the NHS through increased rates of stress, cancer, stroke, dementia and heart disease that manifest among the lonely. Loneliness has a direct physical effect on the body, as well as affecting people's mental health. Lonely disconnected people are also less likely to get the best care from health and social care services, they have noone to advocate for them, noone to question and challenge, noone to boost their confidence to ask difficult questions.
Lonely disconnected people are also far more likely to become victims of abuse, both in the community and in care services. Their lack of social connection makes them vulnerable to hate crime and 'mate crime'. Social isolation and exclusion happens in rural communities, and in the middle of the city.
It's also clear that people are far more likely to feel lonely if they are elderly or disabled, or excluded from society because they belong to another oppressed, discriminated or excluded group.
Loneliness is therefore something that not only exists in every street in every town, it is something both health and social care services meet commonly in their everyday work, so often in fact that we stop even seeing it.
People who work in health services report people who repeatedly turn up at their GP with a new set of symptoms every week, people who fear the loss of community nursing services so much that they will deliberately exacerbate the symptoms they are receiving treatment for. These people often don't get much sympathy, they're called 'heartsink' patients, or branded as 'manipulators' and 'attention seeking'. Yet these are the desperate measures people will go to to alleviate their loneliness, a sign of how deeply their loneliness is causing them pain.
Yet the frustrating thing is that while these services may address the person's immediate diagnosed condition, thinking about how to address the person's social isolation is rare, in fact the way these services work often reinforces such isolation, in countless subtle and not so subtle ways. How much time thought and energy is actually spent in each social care service and with each person thinking about how to help people build relationships or to reconnect with their community?
I used to visit a building regularly. You would walk up a long path beside a building with boarded up windows that had been painted black, it looked like a deserted rotting wooden shell. Once you turned the corner, a 7ft high grey metal fence would meet you. On the gate in that fence was a sign. It read "social inclusion service". If they had tried to design a building to make it's occupants and visitors feel less socially included, I don't think they could have succeeded.
In Britain, social exclusion begins early in the lives of disabled people. Most people build their first connections at school, and by playing with their school friends after school and at weekends. Disabled people often get sent to different schools, often necessitating long travelling times. Opportunities to play outside in the evening are limited. Then what connections they have built up in local communities are torn away for 2 years while they attend 'residential colleges'. When they come back the work of rebuilding those connections can seem daunting.
In discussing loneliness, I've found some people like to divide it into two areas: loneliness; meaning the feeling of loneliness, and 'social isolation'; meaning the structural issues that prevent people from forming meaningful relationships.
I can see the precise academic logic behind this distinction, but I'm not sure whether in practice, the distinction is that useful, and I'm worried that it may even hold us back.
We tend to understand how to deal with loneliness in our own lives and in our own families and friends. If we got together in groups and thought about practical ways to help a person overcome loneliness, we could come up with quite a list.
So many of us are deeply experienced in forming and maintaining relationships, and understand the joys and pitfalls they can bring. It is exactly these experiences we need to tap when we think about how to enable more people to form relationships and have better lives in the community.
But do the same exercise with 'social isolation' and we're likely to be stumped, or just come up with a list full of empty jargon words that contain no practical way forward (basically the same thing).
When loneliness becomes 'social isolation' it sounds far too big and complex to do anything about. Something for the 'experts' to deal with. I also wonder whether loneliness is something 'we' are allowed to feel from time to time, but 'social isolation' is something that only happens to 'them' disabled and elderly people, the 'service users', a jargon word conveniently consigning thinking about that issue and action to resolve it to comfortably outside our own sphere of influence.
Of course we need to take action against the barriers that create loneliness at different levels. The personal level, the community level and the societal level. At each level we need to ask "are we making changes that help people form and maintain lasting and meaningful relationships, or is what we're doing preventing that?"
At a personal level, time spent thinking about a person's relationship circle and how to build it, thinking about using community connecting tools, action to build a circle of support, getting out there and creating opportunities to interact that make sense to the person, that reflect what's important to them, could all be valuable ways forward. Bob Perske has some great thoughts on this.
|Ideas about building communities|
So what are we doing to resist all this? What alternative forums for people to meet, talk, think and act together are springing up? Can we assist this? Can we create our own and bring people in? In America communities face very similar questions, and have developed what they're calling 'Asset Based' approaches. This work has led to developments like 'Local Area Coordination' and its 10 principles. The first, and key principle is:
"As citizens, people vulnerable due to age, disabilities or mental health needs have the same rights and responsibilities as all other people to participate in and contribute to the life of the community."
(Quote from http://inclusiveneighbourhoods.co.uk/)
At a social level we need to start questioning the values and assumptions that are excluding people. Are we thinking too much about institutions, empires, interest rates, and not enough about actual people? Do our leaders consider how national policies might impact on the way people get to meet and spend time with each other?
Gay people don't have 'gay marriages' they have marriages. Disabled people don't in general have 'disabled relationships', they have relationships. Actions and strategies that enable more disabled, chronically sick and elderly people form more meaningful relationships are also likely to enable everybody to form more meaningful relationships.
Personal Budgets add a new layer of complexity to relationships, they enable an employer/employee relationship, which can get complicated when PA's are also people's friends or family. It will be interesting to see how PA's are used by disabled people in opening up their social lives.
Turning the rising tide of loneliness is a great task for the 21st Century. Building warm accepting inclusive communities is everyone's responsibility, and will lead to better lives for everybody.
If the disease is loneliness, then we are all the cure.
"Loneliness is taking a toll on our individual, collective and societal health, and those health consequences carry a heavy economic burden. Just as lonely feelings are nature’s way of telling us to seek out company, the problem of loneliness in society is a prompt to revitalise our communities, and better integrate their members."
Mental Health Foundation: The Lonely Society?
If you're reading this because you feel very lonely yourself, here's some advice from MIND on how to cope with loneliness.
Thanks to 'The Abundant Community' for the image of 44 ways to build community