My first EFC 2019 session was Who decides? How funders can open up the decision-making process to include those they seek to serve. An incredibly popular session, the room swelled with so many bodies that people were leant up against walls and sitting on the floor. However, it was pretty obvious from the outset exactly within which group of people this session was so highly anticipated. ‘This felt like the session that all women would come to, and that’s largely true,’ said panel moderator Jenny Hodgson (Global Fund for Community Foundations).

This critically important conversation centred around the issue of philanthropy’s decision makers, who tend not to have the lived experience of problems which they wish to solve. How can we make involvement more meaningful?

The attendees of this session largely comprised of grantmaking foundations, followed by around half who both raise and grant, and then only a few who were in participatory or consultative grantmaking.

Joe Ferns was first to speak on why the National Lottery Community Fund had moved into this more participatory space. Ferns told attendees that the NLCF distributes around £500 million a year in the UK, ‘but we are a huge bureaucracy’. Increasingly, then, the NLCF has been trying to be more honest about dissecting their mantra – that communities thrive when people are in the lead – and interrogate how successful they have been at seeing this occur. ‘It is easy to default to principle, and we need to get under the skin of things and be a bit more honest.’

Communities and individuals have had their trust in institutions eroded. NLCF is an institution, and we need to be honest about what that really means.

Ferns says that the NLCF has been systematically moving its staff back into communities, and explicitly hiring from these communities. Going from six big hubs to 18 offices, grantmakers now sit in leisure centres, in community centres, and co-locate.

The big issue has been trust, said Ferns. ‘Communities and individuals have had their trust in institutions eroded. NLCF is an institution, and we need to be honest about what that really means.’ But participatory grantmaking is heavy on resources – it takes time, and it certainly takes money. It also necessitates challenging power (and here Ferns made the point of declaring this to be everyone in the room). Power is also within those in our organisations who are higher up than us, who need to be the most ‘pushed’. ‘They need help to give that power up. It is dangerous, frightening and difficult.’

The rewards for this are huge. Relationships are built that did not exist before, and you get better outcomes when you ask those with lived experience. ‘People are not hard to reach,’ said Ferns. ‘It’s organisations that are hard to grasp, and we have to take responsibility for how we operate.’ Changing the workforce of an organisation means genuinely giving people opportunities – not just in terms of diversity of ethnicity, but also of class, of education, of different career paths.

Let anger feel uncomfortable without trying to take it away. In the history of civil society, nothing ever changed without anger.

One consequence of these conversations is anger, Ferns admitted. Communities previously disregarded can feel hostile, and philanthropy practitioners can get defensive and angry in turn. Yet while Ferns agrees that anger is hard to listen to, we need to learn to work more with it. ‘Let anger feel uncomfortable without trying to take it away. In the history of civil society, nothing ever changed without anger.’

Baljeet Sandhu then rose from the panel to speak, as Innovator in Residence, Tsai Centre for Innovative Thinking at Yale. ‘Human history demonstrates clearly that those with experience of injustice are pioneers of social change.’ Sandhu cited Alcoholics Anonymous, created by five alcoholics who have now revolutionised social care services. The problem is where, and to whom, we look for our leaders.

There is a lack of equitable and meaningful opportunities for leaders with lived experience in our sector – such as paid opportunities.

Even when we look for inspirational leaders, said Sandhu, people tend to look to the past for historically exceptional people. But leaders today are everywhere. Those with lived experience have so often felt and been disregarded – whether they were derided as ‘too emotional’, or ‘too vulnerable’, or dismissed as merely unpaid informants of an issue, it undermines the legitimacy and accountability of social purpose work.

People with lived experience need to be seen as changemakers, or leaders of change, said Sandhu. ‘There is a lack of equitable and meaningful opportunities for leaders with lived experience in our sector – such as paid opportunities.’   

Hodgson agreed with this. There is a truth around community development that we need people with lived experience, but ‘in our systems they only get invited so far into a room as a data point, for a conversation, and then the doors close on them.’

Hannah Paterson, also with NLCF, was next to speak. When does a decision get made about funding? Paterson asked. ‘There’s a point at which they respond to an email, sit down with an organisation; what’s feeding those decisions further down the line?’ In looking at working with individuals or social entrepreneurs with lived experience, Paterson and her team were explicit in not requiring people to share their trauma. This, says Paterson, lets the conversation ‘move on’ and continue to develop solutions, to start looking at barriers to leadership.

Paterson described a pioneered form of funding; having received 660 applications for funding, the team got that down to 100, before bringing that 100 to a group of decision makers – three lived experience leaders from Scotland, Wales and England. They were joined by NLCF staff who had never done grantmaking before – from the PA to the chief executive, to a staff member from the finance department and also the evaluation team. With ‘no tables, no agenda, no paper and a washing line of successful grants’, these loose parameters created something exciting and different.

We make a conscious effort to dismantle or mitigate the power dynamic between the donor and changemakers, because we want to be changemakers ourselves

Last to speak was Magda Pochec, Co-Founder and Board Member at Fem Fund, Poland’s first and only women’s fund. Pochec sought to make Fem Fund participatory, as a facilitator of due processes – both in resource mobilisation and in participatory decision-making.

‘We make a conscious effort to dismantle or mitigate the power dynamic between the donor and changemakers, because we want to be changemakers ourselves,’ said Pochec. It is important, therefore, to interrogate what sort of structure Fem Fund has in place, in order to fully reflect their values. This isn’t without its challenges: ‘we’re struggling a lot about what structure we should design, how to be inclusive, how to find that balance between meaningful participation and not over-burdening people.’  

In the afternoon, I attended Keeping science relevant to society. My mind brimming with thoughts of opening up decision making power to people with lived experience, it seemed important to look at how philanthropy should also engage with science communication to the public.

Moderator Ignasi López-Verdeguer (“la Caixa” Foundation) began that whilst citizens are very much in favour, generally speaking, of the idea that science is for the advancement of society, ‘a growing number of citizens have anti-science positions, and believe in disproven fights like the ‘flat earth’ conspiracy.’ Similar arguments are resurfacing over vaccinations, and climate change.

Daniela Ovadia (Centre for Ethics in Science and Journalism/University of Pavia), stated that effective science communication includes dialogue, public participation across social settings and media platforms, and mutual trust among stakeholders. Ovadia gave surveyed instances where only 37% of adults feel that it’s safe to eat genetically modified food, when science has confirmed it is the case. ‘We trust scientists, but not when it comes to our real world.’

There is a perception that science is incapable of self-criticism, and too closely interlinked with politics.

There are different roles that science journalists must play, said Ovadia. There is the public intellectual, the agenda-setter, the watchdog, the investigative reporter, the civic educator, the convenor and the advocate. The public are asking for transparency, and the rise of the right has made certain ‘beliefs’ political. ‘When science becomes a political choice, it then becomes divisive.’ According to Ovadia, whilst science communication needs a better public science education, they also themselves need knowledge of local cultures, they need to empower science journalism and create a business model for future sustainability.

Wilhelm Krull (VokswagenStiftung) spoke next, firstly asking for science and research funders to listen. ‘There is a perception that science is incapable of self-criticism, and too closely interlinked with politics.’

Krull echoed Ovadia, and agreed that those who vote far right politically tend to have the most distrust in science, and do not think that climate change is in any way man made. There is a New Nationalism, said Krull. In Hungary, there have been attacks on the Central European University (CEU), the Hungarian Academy of Science and bans on Gender Studies. In Poland, Krull stated there is also a battle for more ideological control of academic institutions.

‘What can we do as private institutions?’ asked Krull. ‘There has to be quality assurance in biomedical research without cutting away crucial elements of creativity. We cannot exchange creativity for compliance.’ Krull also called for more researchers to become more actively involved in this fight.

Last to speak was Bella Starling (Wellcome Trust Engagement Fellow/Manchester University NHS Trust). ‘We have a problem in the UK that the research we’re doing isn’t very egalitarian,’ Starling said. ‘85% of health research is wasted.’

Whilst there is good news in that there is strong UK interest in science research (83% say health research is very important), this interest is strongly related to social class (for example, this statistic falls to 59% among the long-term unemployed). When asked about dignity and respect in health research, whilst 52% of white respondents agreed that there was, this number was only 35% among ethnic minorities.

In engaging the public – and all areas of the public – Starling argues, it is important to look at organisations, power dynamics and the culture of science itself. Similar to the first session, Starling pointed out that it is crucial to interrogate power.

Starling argues that it is time to get ‘creative’. ‘We know that more people visit art and museums than science centres, so let’s think about that.’ There is much more evidence that art can in fact help health outcomes, and that ‘creative approaches are levellers, and build on positive social identities.’ There is also emerging data that suggests active involvement promotes trust, confidence and participation; that bringing together creative partners, researchers, patients and communities produces further engagement with communities.

Both sessions had echoing themes of empowering citizens to speak and get involved; not only for the credibility of institutions but for a mutually civil society and to deconstruct power. Connectors, artists and others provide platforms whereby people feel much more comfortable talking to experts, and levelling hierarchies.

Both science communication and grantmaking have a long way to go – as Starling said at the end of the session: we ‘need to find the magic that happens at the edges of everything.’

Amy McGoldrick is the Marketing & Advertising Officer at Alliance magazine