In the last of our Lost Voices series, Where has the trust gone? We established that there is a chasm of trust between some of the key players in this sector. From the public to MPs to charities, the layers of mistrust are impacting those with the lived experience the most.

It was only today that Frank Field, Chair of the Work and Pensions Committee highlighted the impact a barrage of emails from the lived experience had in an inquiry into disability benefits. What’s interesting, however, is the distinction Frank Field made between the emails from the lived experience, and generic campaign emails:

We expected to get about 100 letters and we have had over 3,000 and they are still coming in although it is after the date. We’ve never had a tidal wave like this. None of these are campaign letters, which we have discounted. We have only kept those from people who have have spent huge time and effort to portray the misery of what has resulted for them.”

Those who are directly affected by the issues organisations campaign on are often an afterthought. One charity Campaign Engagement Manager I interviewed spoke about their limitations when it comes to involving or recognising those with lived experience (in this case, their beneficiaries): “For every action, we ask people whether or not they’re affected by the condition, and that goes into the email that they send to target, but we’re not doing anything with it. And I’m pretty sure there are no reports that are recording it.

I spoke to Rosemary Frazer, disability rights campaigner about her experience of digital campaigning on disability:

“I have been involved in several digital campaigns, especially around making London transport more accessible. I have signed petitions and sent emails, and I have felt listened to in the campaigns that I’ve been involved in.”

“However, this may be because I’m a seasoned campaigner and I’m confident to speak up about how a campaign is being run. What worries me is that organisations have forgotten their purpose of raising the voices of people who otherwise wouldn’t be listened to.”

Rosemary felt like the mass mobilisation model broke the mould when it first started and had a great impact but now comes across in some organisation a path for pursuing profit and sensationalist headlines over real impact and the lived experience. ‘This destroys mine and others’ enthusiasm for getting involved in campaigns. It makes you quite cynical about whether or not change can happen, and whether it’s worth getting involved in. As a lifelong campaigner I find this really sad.

Our research showed that some organisations ensure those with the lived experience are at the heart of all that they do. I spoke to RECLAIM, a youth charity based in Manchester, about their continual involvement of young people in their work. From working with young people to write blogs and run social media campaigns to training young people to become spokespeople for the organisation, the lived experience permeates every aspect of RECLAIM’s work. They state:Our young people speak confidently for themselves, in their own words, not as token”. Here, involving those with lived experience in a genuine and meaningful way has resulted in campaigns wholly shaped by those who experience the issues at hand. These campaigns have informed strategies for public services, have fed into public consultations, and have provided young people in Manchester to speak directly to London decision makers.

However, larger organisations often struggle to segment their huge online base of supporters to offer those with lived experience a relevant journey that recognises both the contribution of their lived experience and the impact of this on the decision maker.  The result is what Rosemary points towards: generic emails offering vague promises to entice people to campaign without genuine engagement with those who might be directly affected by the issue.

Digital campaigning is a powerful vehicle for those with the lived experience to access power, yet our research has shown that the current use of digital in mass campaigning is not tailored for this purpose. As Becca Bunce’s recent article encapsulates in her piece ‘Clicktivism and Diversity’, “we quickly found digital spaces were replicating barriers found in the real world…In our rush to make use of digital tools, all too often civil society is forgetting to shape them.”

This was most apparent when I spoke to Eleanor Southwood, Chair of the Royal National Institute for the Blind, Clore Social Fellow and local councillor to Brent. Small things like not putting captions on digital pictures can make campaigns really inaccessible – leading people who might be directly affected by the campaign, feeling alienated from the process. “When you feel like things have to be interpreted for you, then you know it’s not really for you.”

When asked about involving the lived experience in campaigning, Eleanor challenged what it means to involve people with the lived experience: “I hate the term case studies. When we ask for case studies, we’re asking for people to verify what we already think. Whereas if you genuinely want to listen to the lived experience, then that requires communication and direct experience.

Involving those with lived experience in the heart of campaigns does not look like creating a shiny new tool as a plaster for the damage caused by the gradual erosion of trust. It looks like charities and organisations truly analysing their audiences and their supporters, and taking steps to increase the diversity of their membership base using a diverse range of tools. Rebuilding trust with charities and those with lived experience looks like creating tailored journeys, alumni and leadership programmes, and understanding how to engage people en masse yet personally. A difficult task indeed – but one we are looking forward to exploring.  

If you want to be part of the conversation that works on rebuilding the trust between charities and those with the lived experience, then please do come along to our hackathon on 7 December.

Central to this hackathon are the voices of those directly affected by the issues they campaign for. So if you’re a member of a charity that is attending the hackathon, will you come along with someone directly affected by your campaigns? They can sign up here: