Selective Mutism and the power of peer support
Jane is in recovery from selective mutism. She recently wrote a very powerful blog for Mind about her experiences. I wanted to interview her for The Hub because of her particular take on peer support. She has an amazing story to tell about her experiences of setting up a peer support group for adults with selective mutism. Throughout my conversation with her, I was struck by her humility and candidness and surprised at how much of what she had learnt would be transferable to other peer support approaches. I think her experience has thrown up a wild array of questions and curiosities that should not be ignored. Over to you, Jane:
Many people still have the belief that people with selective mutism CHOOSE not to speak.
Tell us about what have you done:
I have experienced selective mutism since childhood and managed it with a variety of strategies and techniques. However, as I grew older, these strategies started to let me down and I crashed. As I started to recover, I felt the need for a safe space and connection with people with similar experiences. I really wanted to go to a group. But there was none. And how would a group work for me if all the members had to talk? Talking is what I had struggled with for most of my life!
So for a while I wondered if I could set something up. It was after meeting Maggie Johnson, a speech and language therapist at the forefront of treatment for selective mutism, that the idea became a reality. Maggie agreed to support me so we just started.
Initially we had no funding and no structure; people came through word of mouth and we met at my house. The first question we asked was ‘why do we want to be here?’ Since then, we have developed a range of strategies and structure which allows every single person in the group to be heard and have influence. This is absolutely vital because people with selective mutism have often spent the majority of their lives without a voice. Here’s how it works:
If there is a decision to be made or a question asked, we always vote on it:
In most peer support groups, people have the option to speak and may choose not to. That doesn’t work for a group with selective mutism. Often people don’t speak because they simply can’t. Their anxiety levels at the thought or expectation of having to talk would be prohibitively high. So we needed to devise a way by which absolutely everyone had a voice even if they couldn’t say what they wanted.
We created a voting system – one that’s completely anonymous – which initially started with three options: yes, no and I’m not sure. However, with my lived experience, I knew there needed to be a fourth option which said something like – ‘yes, I’d like to, but I can’t do it now’. When we started to use this approach, it was like a flood gate had opened for people. For the first time they were able to respond! Our meetings can be quite drawn out. It takes time to work through issues using our voting system. We keep voting until we arrive at a solution that everyone is happy with.
We don’t go with the majority:
This was something we voted on! It is based on the fact that people with selective mutism might say ‘no’ to something because it would force their anxiety levels through the roof. In a safe space like a peer support group, pushing people in this way would be disastrous for them. So we all agreed that even if only one person says ‘no’ to something, we don’t do it. In this way, rather than thinking singularly about their own needs, everyone can give something back to the members of the group.
What is the best thing you’ve done so far?
I think the fact that I’ve done something! It has made such a difference to the people who come to the group. You can visibly see it. Some of them walked through the door without eye contact and now they have a beaming smile and if you ask them if they’d like a cup of tea – they can say ‘yes please’.
What would you have done differently?
When we started out, we didn’t put too much thought to funding for the group. It would have slowed us down and stopped the freeness of just going for it and setting up. However, now I can see the need for funding to ensure sustainability for the future. The structure and the need for the group is sustainable. But, I’m running something similar in London (five members attended immediately) and I don’t have the capacity to continue.
Who or what has been your biggest inspiration?
I happened to see a quote from Vint Serf , the American internet pioneer which read ‘…we were expecting that some authority would finally come along and say “Here’s how we are going to do it”. And nobody ever came along.’ This made me think: no one else is going to do it so I will.
Now I’m focusing on sustainability and how this work is going to continue. We need to find funding if we’re going to be able to continue as we are. We’d also like to share what we know: we have a structure and a model which we know works and can be replicable to other groups. My dream is for a peer support group in every region of the UK.
Where can we find out more?
The name of the peer support group is SMTalkingCircles and we have an email address which is firstname.lastname@example.org. Feel free to contact us or join us.
Watch this video which was written, made and narrated by people from our peer support group who have experienced selective mutism to understand more about us.
My favourite quote:
“If at first the idea is not absurd, then there is no hope for it”Albert Einsten