Benefits of lived experience on nonprofit boards

• Our boards must be close to the needs and challenges we're trying to tackle. There is a ‘them and us’ in many charities. This can often be experienced as paternalistic - certainly when many trustees are older in age, often retired and far from the world lived by the beneficiary.
• It’s a bit of a ‘no brainer’ - how are you supposed to create positive change in a community when you have no one from that community on a board? The insight of someone with lived experience is fundamental to meeting your charitable objectives.
• Boards, like any high performing teams, need a variety of attitudes, personalities and characters in order to avoid group think and encourage positive exploration. It is more about the right mix of characters and personalities than it is about their past experience.
• Given the opportunity, and with the right culture in place within the board, people with lived experience tend to speak more directly than others, and in a way that grounds a charity in the varied lives of those it exists to serve.
• Credibility, legitimacy, efficiency, effectiveness, equity enabling authentic representation and a better understanding of the issues being tackled.
• A board that is as grounded as possible within the realities of people’s lives will do a better job of serving people and, as momentum grows, more and more boards will see the benefits and make the changes required within their governance systems and structures.

• Our boards must be close to the needs and challenges we're trying to tackle.
• It's about standing in the shoes and then offering that experience to bring richness and reality to board discussions.
• Adds a perspective that will enable better decision making and organisations to reflect the community they hope to serve.
• Sharing power, more representation and understanding of issues - better, more informed decisions.
• A range of ways for boards to hear from people with lived experience is helpful, so that people with lived experience of the cause can inform governance through different methods that best suit them. One size should not fit all!
• It provides people with lived experience with expanded choices to become involved and to shape organisations and systems – the potential for mutuality – benefitting both parties.

• Giving people an authentic voice, decision making responsibilities and an opportunity to learn, grow and develop.
• Service user leadership is a central ethos of the way we work across the organisation, and trustees on our board reflect the importance of that leadership requirement – it also means that the people we work alongside in our services may be inspired by seeing those with lived experience on boards.
• Some people with lived experience may not get the opportunity to enter the board of an organisation without prior experience of governance, and may be seen as less ‘desirable’ – joining a board that is interested in and values their lived experience provides amazing opportunities for people to develop their knowledge and experience of governance that can be applied elsewhere in future.

• Groups of individuals make better decisions than one (no one person can have the breadth of insight required):
• Group decision making works best when:
  • Each individual in the group reaches their judgement independently.
  • All the evidence, information and insights are shared.
  • You have all the perspectives relevant to the topic (including lived experience of the cause).
  • There is cognitive diversity (different background and life experiences, different thinking styles and views of the world, different frames of reference and mental models).

• Groups (however diverse they are to start with) have a tendency to become more similar over time and gravitate towards shared blind spots.
• A dominant leader (eg. a Chair who always gives their view before opening the discussion up to the rest of the board) can suppress different views.
• People find it hard to disagree and tend to avoid conflict.
• We all come with unconscious biases that affect how we look at the world and contribute to dialogue and debate. Take a look at Pragya Agarwal’s video introducing her book ‘Sway: Unravelling Unconscious Bias’.

Kate Hitchcock, Grants Manager at the Paul Hamlyn Foundation, and Bayes Business School postgraduate student (PGDip/MSc Voluntary Sector Management), shares her insights and personal reflections on her first year as a trustee with lived experience at the National Association for People Abused in Childhood (NAPAC).

Last summer I joined the National Association for People Abused in Childhood (NAPAC) as a trustee. It’s a cause that is very close to my heart, due to my own experience of physical and emotional abuse as a child and teenager, which led to me leaving home at the age of 17. I was lucky; I got help from a local Foyer, which provided me with a safe place to stay. With their support, I was able to finish school and get into university. I could say that I “never looked back”, except that actually my entire career has kind of been a case of looking back. When I left university I went to work for an NPO supporting young people in Hong Kong, and discovered my passion for working in the not for profit sector. I went on to work in the voluntary youth sector, and here I have stayed.  I am currently employed by the Paul Hamlyn Foundation as a Grants Manager on our Youth Fund. I think of myself as a ‘lived experience’ professional – by which I mean, someone who has personal experience of a social justice issue, who then draws upon that experience within their role. It hasn’t always been an easy ride. In my early career, I wasn’t sure whether I should divulge my lived experience. It felt like something that I needed to hide. Unfortunately, this is all too common; in 2019, the Lived Experience Movement (of which I was a part) reported that many leaders fear the “stigma, bias and discrimination” that can come with openly sharing their backgrounds.¹⁾ However, the longer I worked in the charity sector, the more I realised that my lived experience was an asset, giving me an insight into the very issues I was working to address. I officially disclosed my experience for the first time when I went to work at the Foyer Federation, the same organisation that had helped me back when I left home at 17.  It was with all of this in mind that I came to be a trustee at NAPAC. I had been wanting to get into volunteering for a while, and a trustee role looked like a great way to get some hands-on experience of running a charity. I was attracted to NAPAC because it was helping people who had been through similar things to me, meaning that once again I could use my lived experience to make a positive difference.

I’m now coming up to a year in post and have seen many resources for organisations seeking to involve lived experience trustees on their boards. However, I have found that there isn’t much advice out there for the individuals once they are in post. So, here are my key reflections from my first year, for others considering becoming a lived experience trustee.

1. As a trustee, you are a steward for the organisation. You are responsible for ensuring it is well-run and achieves its charitable objectives. When you care deeply about a cause that is personal to you, this can be quite a nerve-wracking prospect. It’s important to undertake these duties thoughtfully and thoroughly. However, it’s also important not to let them overwhelm you. I sometimes find myself getting very passionate and concerned about certain topics, which is fine, but I have to be careful to keep myself balanced and look after my mental health at the same time. NAPAC offers supervision to all trustees and staff members. It’s vital to make sure that you have the right support in place as you do this important work.

2. My lived experience has given me a very different set of ideas and insights to the other members of the board. I often ask questions that no one else seems to be thinking about, and I sometimes seem to worry about different things than the other board members. This can be daunting; I frequently question myself and wonder if I am focusing on the right things. However, research has shown that challenge and debate are key elements for a healthy, well-functioning board. ²⁾

3. Following on from the point above, I regularly remind myself that I alone can never fully represent NAPAC’s beneficiaries, nor should I try. Within NAPAC there are multiple members of the team with lived experience that I know of, and I am aware that there may also be some who have decided not to share their lived experience publicly. Instead, I see my role as advocating for service users and reminding and encouraging NAPAC’s leadership to consider their voices in everything we do. For example, when I realised that we didn’t have much data around Diversity, Equity and Inclusion (DEI), I suggested we undertake a review and talk to the board, the staff, and eventually the service users about this important issue. This suggestion was well-received, and we have already kicked off with a survey of the board and the senior team, with plans to develop this further as part of our new strategic plan. I felt incredibly proud that I had been able to make a difference in this way.

4. Becoming a trustee of any organisation is a challenge. You have to learn about your legal responsibilities, get to know the organisation’s policies, programmes, and structure, and work out where you fit within the wider board dynamics. I found this quite hard at first. I had a thousand and one ideas, and as a lived experience trustee these ideas all felt extra urgent and exciting. I wanted to start doing things immediately, whereas actually what I needed to do was take it all in first. One of the best things I did was go to visit NAPAC’s call centre, where people who have experienced childhood abuse can phone up anonymously and get support. It was incredible seeing the team in action and understanding the difference they make for our callers. It was a very emotional day, and I cried more than once, but came away feeling invigorated about the work. This has been a key factor in helping me to work through all the different challenges that naturally come up as a part of being a trustee. At times it has been an emotional roller coaster but feeling a personal connection to the work has helped keep my motivation levels high.

5. That being said, a trustee role is an excellent opportunity to roll up your sleeves and get stuck in, which to me, as someone with lived experience, felt important. The team at NAPAC have invited me to participate in quite a few activities outside of the board meetings. For example, I have helped out with funding bids and been heavily involved in the DEI review. It’s very satisfying to be able to have a direct impact in this way and I’ve felt like the team at NAPAC really value my contributions.

I don’t want to downplay the challenges of being a lived experience trustee, especially when you are the only one who is officially ‘out’. I still carry the impact of my childhood trauma with me and can sometimes be triggered by issues that come up at NAPAC (and indeed in my daily work in the charity sector). As such, I find myself constantly trying to balance the personal with the professional. However, I believe that the combination of these elements – what the LEx Movement refers to as ‘activating’ lived experience – is very powerful, and important to have within a charity board. As trustees, we must be responsible and discharge our duties effectively, but we also need to act with love, compassion, and in a way that centres the voices of those most impacted by social justice issues. For example, NAPAC advocates for working in a trauma informed way, and this was one of the things that attracted me to the organisation.  Overall, I feel like being a lived experience trustee has helped me to develop both professionally and personally. I’ve valued the opportunity to make a difference to other people like me, and I’ve come to see my role very much as a facilitator and conduit for their voices, rather than a single representative of the group. I’m sure I have a lot more to learn on my journey.

NAPAC will be celebrating its 25th anniversary in 2023. You can find details on how to access its anonymous helpline here, and resources for survivors here.

References:

1. See Sandhu, B (2019) Lived Experience Leadership: Rebooting the DNA of Leadership, LEx Movement, published online.  You can find this and other publications about lived experience leadership at the Centre for Knowledge Equity.

2.  See Chapter 7 in Cornforth, C. (2014) Nonprofit governance: innovative perspectives and approaches, Routledge, Abingdon, Oxon.

In this interesting article for Medium, Olivia Bee, a 'young trustee' for Plan International UK, sets out exactly why she loves being a trustee.

Cyle Carth, founder of Good Guys Decorating, would meet trustees of Carney’s Community occasionally at the annual Christmas party but never gave a thought to becoming a board member himself. When he was invited to become a trustee in early 2020, he still had no idea what the role was all about.

Carney's Community was co-founded in 2011 by George Turner. The organisation’s mission is to get disadvantaged and excluded young people off the street and away from a life of crime and despair by giving them skills, discipline, and self-respect. Cyle Carth was 11 years old and part of a youth offending programme that aimed to keep young people out of prison when he met George Turner, before ‘Carney’s Community’ even existed.

After George established Carney’s he stayed in contact with Cyle, who describes himself as “a walking, talking example of what Carney’s is all about”. Cyle set up his own business and went from being, in his own words, “the worst offender in Wandsworth!” to receiving a civic award as a community champion of the borough in 2019.

Cyle says that what made a real difference to his experience of joining the Carney’s Community board was his first board meeting, when all the trustees went round the room welcoming him, saying how much they valued Cyle joining the board, and how much his opinion and contribution would mean.

From the start, Cyle noticed how well the board listens to each other, and how everyone’s voice is important. He says that there’s a “family energy” throughout the organisation which extends to the board. Everyone is there to make a difference and achieve the right thing for Carney’s. Whilst Cyle brings direct lived experience into the boardroom, his role is treated just the same as all the other trustees.

One of the other Carney’s Community trustees offered an example to illustrate how Cyle’s contribution has made a valuable and practical difference to the board. When the Black Lives Matter (BLM) movement emerged in 2020 the board, who were predominantly white and middle class, was discussing how to respond and whether they should produce a formal statement outlining their position.

Cyle suggested that Carney’s already represented the aims of the BLM movement and that it didn’t need to jump in with an overly formalised response but should let it evolve naturally. His fellow trustee commented that Cyle’s suggested approach “reined us in a bit” and helped the board set the appropriate nature and tone of their response.

"I have something to offer, insight not everyone can claim to, and I now have a voice".

In this powerful account, Dena Pursell shares her story about why including lived experience in governance is so important.  Dena attended a Beyond Suffrage trustee training programme and is a volunteer with Groundswell.

In her 2017 blog, Kate Ferguson, former Chair of The Advocacy Project describes the rewards of a diverse board. She outlines some of the ways that the required commitment and support has been provided, and the positive impact that a having a diverse board has had on the organisation.

Baljeet Sandhu discusses the moral, economic and social imperatives of lived experience leadership in her report The Value of Lived Experience in Social Change (2019), based on research carried out as part of her Clore Social Leadership Fellowship. The report is a call to action for all of us. She defines Lived Experience Leadership, discusses its value, the system change we need to overcome the challenges, and the pressing need for leadership development.

The Young Trustees Movement champions the importance of having the perspectives of young people on charity boards. They are clear about the benefits, not just to the charity, but also for the young person, their employer and wider society. In this blog they explore how to articulate the benefits. And see a checklist ‘Getting Young People onto your Board’ offered by iwill who believe that young people should have the power to shape and address the issues that affect their lives and the future of the country.

This Civil Society article Seven Secrets of what makes an Award Winning Charity includes Charity Awards winner Who Cares? Scotland describing the importance of beneficiary representation running right through the organisation.

In this article published in 'Third Sector' (2021), Debra Allcock Tyler discusses her personal experience of realising the importance and value of lived experience.

A really interesting article from Roger Martin, on diversity in strategy development, published in Medium (August 2021).