As, we have previously shared with you, Disability Rights UK (DRUK) & People’s Voice Media have been working in partnership to record people’s lived experience narratives and insights about the COVID-19 pandemic and lockdowns. We are now ready to share the results of this work with you.

The Stories

During the project, we had the privilege to hear from people about their first-hand experiences of the pandemic. Many of these stories are difficult to hear but it is important that we listen and learn from them. We’ve create a playlist of key extracts from the some of the stories shared, that includes:

• Keymn explaining why having an understanding of the value of lived and living experience is training that healthcare professionals must have.
• Miro exploring why society has to re-think and understand disability differently.
• Amanda telling us why COVID information was not fully accessible for Deaf people and what could have been done differently.
• Andy explaining to Isaac the reasons for involving people with lived and living experiences.
• Hameed discussing both the positive and negative aspects of the pandemic.
• Baroness Brinton talking about health and social care problems that were highlighted during the pandemic.

You can listen to this playlist here.

And to listen to all of the experiences gathered relating to the pandemic, head to this page on the Community Reporter website: https://communityreporter.net/covid-conversations

The PVM process starts with individuals narrating their experiences, facts and feelings. We did this by talking to 22 people as part of the joint work with DRUK, so that the lived experiences of Deaf and Disabled people could be input to the COVID Inquiry.

The storytelling process

Isaac – the person who led this work, describes how in one part of the process, the information given by individuals seemed overwhelming and it was difficult to decide what are the key points we should communicate to the inquiry. This was because everything felt important and relevant and because the task of determining key themes seemed a limiting process.  It felt as though every point people made was important and felt like we might be trivialising the topic if we tried to distil it to a few simple ‘key points’ or ‘recommendations’.

However, the Community Reporting curation process (part of which was done with the storytellers themselves) means that meaning emerges from the stories and we are able to work with the detail and the nuance of people’s individual experiences. This doesn’t happen by magic. We listen and highlight what we think is important. We might colour code, group ideas together or count how often topics are talked about. We also consider how frequently a contributor might return to talk about a lived experience, as an indication of how strongly they feel about the issue. This is a multifaceted approached that allows us to work with both the individual stories (and highlight individual people’s voices) but also stories as a set of data.

For the COVID Inquiry work, we used dialogue interview and open questions to allow people to give their lived and living experiences using in their own words. As the work progressed, and by the time we had recorded 10 narratives, we started to ask people’s perspectives on topics that emerged in the other stories. There was definitely the need to balance the open questions against more focussed ones, because we did not want to lead the participants down a specific route, but we were aware that being able to give the COVID Inquiry team specific details would be important.

The findings

In the report we’ve included direct quotations from many of the people who shared their lived experiences. Where necessary, we’ve also offered explanations, based on the conversations and online sense making workshops we held. This is because we wanted to be clear about why particular aspects were different or difficult for Deaf and Disabled people. The key points from the report are:

• There was confusing and frightening information from national government and local authorities to Deaf and Disabled people.
• COVID both highlighted and exacerbated existing systemic problems and Inequalities (including racism, ageism and ableism) within statutory services
• Even though there is legislation, little understanding exists about Deaf and Disabled people’s needs.

The report is comprehensive and has had an emotional impact on some readers. We hope it will give people’s voices meaning so that the COVID Inquiry can make recommendations that will support Deaf and Disabled people, together with their carers. As Keymn Whervin stated in the foreword to the report: “The Inquiry must ensure that people affected by COVID have their voices heard, particularly in respect of how we co-produce health and social care”.

Democracy across Europe has experienced immense challenge, change and uncertainty in recent years (Canal 2014; European Commission & Merkel; 2019) – from the rise of populism to decreasing levels of public trust in governance institutions and processes, to the war in Ukraine. Set against the backdrop of these issues, EUARENAS has been investigating how cities and urban spaces can strengthen legitimacy, identification and engagement within the democratic public sphere. Foresight is one of the research strands present in EUARENAS. This report and visualisation are the final outputs from this foresight work and synthesises the varied research activities’ core findings.

From the work, an understanding of the current state of play of local democracy has been used to create (largely preferred) future visions for local democracies in Europe. Some common elements of these future visions are:

• Sustainable, long-term thinking
• Valuing difference and diversity
• Embracing the natural environment
• Being pro-actively inclusive and dismantling oppressive structures
• Rehumanising our cities – value-based working that centralises humanity, empathy, trust and transparency

The report proposes the following recommendations for Cities wanting to strive towards more equitable local democracies:

1. Address structural barriers to participation
2. Build relationships of trust
3. Invest in formal and civic education
4. Make decisions for the long-term

A more equitable, inclusive local democracy landscape is not too far in the distance for us to conceive it being possible. In fact, the future is now – the seeds to create it are already being planted, they just need nurturing by:

• Scaling and mainstreaming existing pilot or niche practices that are working locally – whether that beparticipatory budgeting, citizen assemblies or other smaller-scale projects – so that these become thenew ‘status quo’
• Adopting test and learn approaches to promote experimentation and on-going learning – this will enableongoing innovation and be responsive to society’s needs
• Finding ways to celebrate and connect-up the small changes that are taking place – this will help people see that progress is being made, even when it feels like things are changing too slow

To download the full report, click here.

We’ve also worked with Artist Lizzy Doe to create a visualisation of the EUARENAS City of the Future. Click here for the web version. Click here for the print-ready version. Click here for the audio description.

As part of National Co-Production Week in England, we teamed-up once again with Curators of Change, Ideas Alliance, Camerados and many more fabulous organisations, groups and people to deliver the second Not Another Co-Production Project’s Learning Festival in Birmingham.

Over the last year, we’ve been working with folk from across the West Midlands, exploring how co-production and lived experience storytelling can be used in their work to create better outcomes for their communities. The Learning Festival is a chance for people involved in the Not Another Co-Production project to showcase some of their work, have conversations about co-production and of course, welcome people from outside of the project into the discussions.

We started the day with a ‘pre-event’ Conversation of Change, hosted with the Equality Trust that looked at the financial pressures and stresses that residents of Birmingham are facing. During the workshop, we heard different residents’ experiences – from the difficulties of accessing benefits and support, to the financial implications of being a single person. We discussed how these experiences related to our own and how we could make Birmingham a more equal city. The work is part of a larger programme of activity that the Equality Trust is leading on, working with Birmingham City Council to help them implement their social and economic duty.

Following, this the festival went into full swing – a community choir provided and upbeat opening to the event. Around the space, various community groups and local authorities had set-up stalls and activities, hosting conversations, creative activities and much more with the festival attendees. Central to the festival, was a pop-up Public Living Room which set an informal vibe to the event, and in which people could chat, connect and share. Food was flowing throughout the day… samosas, spring rolls, soup, pastries and cakes… and the informality was interspersed with scheduled activities such as arts workshops and the return of the ‘Confessions of a co-producer’ talk show in which attendees spontaneously became guests and chatted with the crew about co-pro.

Next year, the project is moving to North East London and we will soon be releasing a call for people to get involved… so until then, a massive thank you to the West Midlands folk for making the festival and the project happen, and cheers to all our attendees who came and contributed on the day. See you all again soon!

The Consortium Against Pain in Equalities (CAPE) from Dundee University and People’s Voice Media have been working with and using Community Reporting to help with research.

CAPE are conducting research into whether there is a link between adverse childhood experiences (ACEs) and high levels of chronic pain in adult life in the most deprived communities and looking at the consequences of this.

The interaction between the CAPE project, People’s Voice Media and the Community Reporter network has demonstrated how lived experience stories can be used as a valuable research tool. To contribute to this research, People’s Voice Media collected stories of people’s experiences of living with pain. At the heart of these stories have been many challenges, but also many opportunities. We’ve now pulled together these narratives and an animator has been commissioned to produce an animation.

The animation will be used in training settings to help practitioners and people supporting people with long term chronic pain to understand the importance of empathy and communication. Understanding individuals’ lived and living experiences of pain can lead to effective change for all. 

In all the collected narratives, being believed and understood were key. Many participants reported that a turning point for them in managing their pain had been when just one person believed them and showed empathy. Sometimes this was from a clinician, but many had found peer support invaluable, to know that they were not alone. Empathy is crucial for people living with pain, and it’s needed within all the interactions people have, from interpersonal relationships to statutory health and social care providers in addition to employers.

Key themes from the lived experience narratives included; work, access to information, advice and guidance and feeling able to do the things that most people take for granted like leisure activities.

These are often difficult because people living with chronic pain might only use their energy for essential tasks, like going to the chemist or doing the household laundry. It might also mean they feel excluded from leisure activities because they can’t do the same or as much as their friends, or perhaps their pain is just not understood by others.

Additional key points are around the prejudice and discrimination experienced by people living with chronic pain. It’s clear from these narratives that chronic pain affects every part of people’s lives, including intimacy and how people view themselves in respect of a relationship. These lived experiences demonstrate the various responses people receive when seeking help and understanding to manage their pain. Many had negative or indifferent responses from others.

Empathy is vital if we want effective and sustainable change in society and the services people access. We need to consider the challenges people face from different perspectives. Then we need to develop more inclusive and equitable solutions, and ultimately, work towards a better world for those living with pain. All this starts by putting ourselves in another person’s shoes and experiencing their emotions and struggles.

The narratives that PVM collects is one way to do this, by listening to individuals’ stories first hand and thinking about what we might do or feel if we were them. Empathising means we can acknowledge their experiences and validate their feelings. It can also mean recognising the barriers that stop people from accessing resources and opportunities.

Through empathy we can start to understand different groups’ lived experiences and develop solutions that are more inclusive and equitable.

Social media provides a window into current debates, social issues and topics that are relevant to communities. Whilst social media is not necessarily a reflection of society and, like traditional media, they are a distorted representation of current trends rather than a mirror image, they can still help us to understand what is happening in society. Social media accounts connected to social movements can provide us with signs of what issues and debates are pertinent to people (as opposed to institutions). They offer us a glimpse of emerging forms of citizen participation and action. 

Such content can be useful for thinking about the future. As part of EUARENAS, we used social media posts and aspects of the Delphi method to explore the future of democracy in Europe. Three national studies were undertaken in the UK, Finland and Poland, with a fourth study taking place with experts from across Italy, Hungary and Portugal. The results of this work, are summarised in this blog post. 

Signals for the future: UK

This study suggests that co-production – not faux-production – could be a vital tool for enabling participation in democracy, particularly for people who are currently excluded. To enable inclusion in democratic action, inclusive language is needed (e.g., language that is simplified, jargon-free and not academic). More so, there should be an emphasis on independent voices sharing stories and lived experience as part of these processes so that different perspectives and types of knowledge are included and valued. The work also highlighted a need to ‘join-up’ grassroots movements with more mainstream democratic organisations in order to progress agendas – at present people seem to be in their silos and progress is not as quick as many would like. Thus, an emphasis on calls to action is needed – not just awareness-raising.  

Signals for the future: Finland

The social media content demonstrated that there are rising demands for equality, inclusiveness, sustainability, and all-round approaches in democracy. However, there is a polarisation of political views on social media sites that work against this. They are being used as opinion-sharing platforms, rather than spaces for people to exchange ideas. The experts felt it is possible to reimagine how technology like social media can create spaces that promote dialogue between different perspectives. This connects to a ‘call for action’ within the social media posts themselves – a need for education on critical thinking was identified. This could support people to better understand and assess information and media content, as well as engage in public discussions and not become entrenched in their position/perspective. 

Signals for the future: Poland

The study suggests that the financial crisis and the war in Ukraine make it seem less possible for citizens to engage in democracy. More so, the posts also displayed a sentiment of a lack of trust in any type of media and in governance structures – this was also expressed by the experts themselves. In a similar way to the findings from the UK, the posts and expert discussion around them identified that there is a lack of inclusive language on social media when talking about democracy. To engage with the general public it was felt that posts should be simple, not academic and gender-equal. Furthermore, like in the UK work, the posts highlighted a sense that talking was not enough, action needed to be taken – there was an urgency around this, perhaps ignited by the invasion of Ukraine. Finally, like in Finland, the social media content identified a strongly polarised “discussion” concerning democracy. This polarisation is something that local democracies need to address to build stronger communities and cohesion in the future. 

Signals for the future: Multi-location (Italy, Hungary and Portugal)

This study highlighted how local administrations need to mirror the bottom-up process of citizen engagement displayed by associations, neighbourhood committees and active civic initiatives. However, there is space to innovate in this arena. Participatory projects are focused largely on urban parks or the management of the green areas – these need to spread to all aspects of the community. It was felt that people who give time to such initiatives need to be recognised with rewards or pay back schemes. Finally, in terms of education, this work identified that support is needed to help people and organisations to utilise social media as an effective means of building campaigns. 

So, what are the key takeaways for building a better future for democracy?

1. Inclusive language – Remove the initial barrier to entering into this conversation by making language (text and visuals) more accessible and inclusive when discussing democracy and/or promoting initiatives. 
2. Collaboration as the norm – Breaking down the silos between different groups, organisations and institutions and embedding ‘alternative practice’ within existing systems to catalyse change.
3. Creating critical, curious minds – Using education and learning as a tool to equip people with the skills to assess content and information in the digital world, and develop the capacity to stay curious, seek to understand different perspectives and be open to changing their mind.