Does Peer Support Always Help Disabled People?

When we have a problem, any problem, it is good to talk with people who are having or have had the same problem so we can share experiences and learn from each other. This is often referred to as ‘peer support’ and for a long time in many situations, it has been formalised and funded accordingly. This has included local groups set up by disability organisations on issues like employing personal assistants, parenting and so on.

I have tended to avoid these quite sterile face to face peer support groups because even with a good facilitator, I know that my confidence and knowledge means I am most likely to be giving as oppose to taking at these meetings. And often because I am perceived to be super-independent, it is assumed I do not need support myself, which I clearly do, even if it is at a different level or in another context. With all this said, over the years I have provided peer support online to many friends who seem to see me as a better source of help than any funded helpline, especially on a Sunday! My friends, not always the same friends, have also supported me, especially when I have been emotionally fragile, which until six years ago I had not understood to be a part of having mild bipolar.

I believe the key to successful peer support is a good facilitator, having someone either professional or experienced, who is able to leave their own baggage at the door and support other members of the group to duly work through their issues and come out the other side whole. People in despair do not think straight and so if a group of people in despair are left to their own devices, they can feed upon each other’s despair, building a paranoid understanding of the situation, which is not helpful to anyone.

I feel the internet, social media and particularly Twitter has enabled a new kind of unfacilitated informal peer support to develop and grow, which is potentially dangerous and harmful. Twitter is a marvellous tool that enables us to connect to people in new ways, based on their opinions rather than location or social status. While this can help us to broaden our minds, it can at the same time make us very insulated as we surround our mental and emotional space with people that only share our specific view of the world.

While this is very natural and in most situations, very helpful in feeling we belong somewhere, if people in distress or despair build a social framework around them that prolongs their negative emotions and stops them from moving forward, than it is not helping them at all. The journey of any change, especially unplanned change, such as the onset of illness and impairment, will have its emotional highs and lows. We are in control of how to respond to them and so we can choose to make a career out of a particular low point if we choose, even if we are unaware of this at the time.

The aim of properly facilitated peer support is to support people to move pass the low points, as well as celebrating the high ones. But if peer support is only used to wallow in self-pity, especially where there is a political agenda attached to this feeling, than it is helping no one in the long term. It is ironic that while many people with addiction issues are big advocates for peer support, with the numerous ‘something anonymous’ programs, an endless need for self-defeating peer support can be an addiction in itself.

It is never easy to tell people what they are not ready to hear, despite how obvious it may appear to us, and this is often my greatest frustration as I see people using blogs and Twitter to unknowingly emotionally harm themselves and others. And to a degree, I am not worried about their actions specifically, but rather those around them who should know a bit better in not feeding their appetite for distress and despair. Unfortunately, and the saddest part of it all, is the distress and despair of disabled people is now woven into modern politics and how this election is being fought on all sides.

from Simon Stevens


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