Nothing about us without us: why lived experience is invaluable to peer support

When looking at the holes in support systems we are forced to reconcile with the fact that although lived experience is championed within grassroots and alternative approaches, it is still looked down upon from the nauseating heights of academia. When those that are treated as case studies become organised and create their own structures of support and community, the institution itself becomes threatened. Creating peer networks around lived experience allows us to treat our peers with an understanding and a tenderness that they may not be treated with in any other space. We have the power to build widespread autonomous communities, creating spaces that are not just empathetic but understanding. 

I work at Hearts & Minds, a peer support group for young people aged 14-25 with lived experience of mental health difficulties. In response to our own limitations, we used money raised from a recent fundraiser to expand our team to include 4 people who bring their own identities and lived experience to Hearts & Minds. Through doing this, we are immediately able to reach and support a wider network of young people who are looking for someone to hold space for them. Sharing lived experience means not having to spell something out, not having a cultural norm questioned, not having a gender or sexual identity picked apart – it gives us a space to breathe and get to the very core of what is troubling us without having to do weeks worth of contextualising. Amanda, our new Brave Space facilitator for black, brown, and ethnic minority young people explains how ‘not understanding someone’s culture can create a large gap in understanding someone’s experiences’, and that if a practitioner sees another person’s culture or ritual as ‘extremely harmful, but you see that as a normative practice , you lose a lot of time discussing what’s not important’. Amanda also acknowledges that ‘it takes a lot of courage to discuss mental health, especially if you’re from a marginalised community and that’s a stigmatised thing’, a feeling which must only be exacerbated if the person sitting opposite you understand none of your points of reference. 

Raihan, who is our LGBTIQ+ Brave Space facilitator, holds a perspective more inline with mental health abolition, what are the intentions of ‘being better’, and who gets to decide whether you are or aren’t. Raihan states that, ‘mental health services, much like any services devised from political and scientific knowledge often are motivated by the following imperatives: to get the patient to a state of function/productivity for wage-labour, socialising adequately with others, and discharge from services.’ They go on to express how running a specialised lived experience group for them means they can work with young people to let them know that ‘The issue is not who or what they are, but the suffering they endure as a result of their condition and others’ treatment of them.’ This concept is extremely liberating, to understand that we are working with young people who are experiencing trauma based on the intersections of their beings. If we can show young people that there are other people like them, struggling, surviving, thriving, we can open doors of possibility. 

Another battle we are up against is practitioners not having a clear understanding of people’s experiences. Sarah, our facilitator for our Autistic Brave Space group, ‘Many practitioners still have so little understanding of autism. Often we need adjustments and adaptations to mainstream mental health services to benefit from them, which often just doesn’t happen.’ When someone has no understanding of what it’s like to have your needs, how can they adequately provide them? Or, as Sarah succinctly puts it, ‘We understand what it means to be autistic and how being autistic in this world impacts our mental health, which is something most mental health practitioners cannot provide!’

Finally, a very real threat for Hassnat, our facilitator for young people who see visions and hear voices, was simply not being believed. On her experiences of trying to access support she says ‘I struggled for months, I was almost begging to be helped and I got told “it’s not real” she said it so casually and that is when I realised they can say it as much as they want but they won’t understand what I am going through.’ Hassnat says that, ‘To say “I understand” is a common phrase used by many health professionals but do they? I do understand because I have lived through this, it is not just a reassuring phrase for me, it is an acknowledgment of the experiences and a deep rooted desire to offer support.’ 

When wanting to expand our services, Hearts & Minds were adamant that we would prioritise people’s lived experiences above all else, and that we would find ways to build community led by the people within it. We believe in the old rhetoric ‘nothing about us without us’, because as a concept it has stood the test of time! You cannot create for, only with. Solidarity is vital, but can only get us so far. We must be creating and sustaining peer support spaces run by people with lived experience in order to really allow people to thrive.