Bayo Adelaja: Giving lived experience a seat at the table - an interview with the CEO of Do it Now Now

'Lived experience’ can be defined as “Personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people” (1). The term has been increasingly used in social policy (2) and social activism throughout the 20th and 21st centuries, and is often used in the context of first-hand experience of a particular social issue.

Research within this space shows that while the term is widely understood and considered within the social impact sector, its value is inconsistently understood, and there is a lack of agency or leadership afforded to those with lived experience of a social issue (3).

We wanted to speak to Bayo Adelaja, a champion of lived experience leadership, on the topic. Bayo is the founder and CEO of Do it Now Now, a social enterprise driven by its mission to bridge the gap in social mobility, financial inclusion and entrepreneurship experienced by Black people by improving access to funding, resources and opportunities. Do it Now Now has just released a report exploring the lived experience of management and staff at Black-led impact organisations within the UK’s voluntary sector.

What does the term ‘lived experience’ mean to you?

Within the social impact sector, specifically, we're talking about lived experience from the perspective of the challenges that you've faced in your life that have stopped you, or created a significant barrier to your ability to achieve certain things. From a racial justice perspective, which is the viewpoint that I come at it from, it means that I have experienced quite serious incidents of racism in my life. But I've also experienced microaggressions in the workplace, along with the full gamut of debilitating measures that have affected my ability to be more than I am today. While I agree with the consensus that I have somehow overcome most of those challenges, and thankfully landed in success, I also recognise that no one should have to work as hard or face the level of challenge that I faced in order to be the person that I am today.

What differentiates a lived-experience leader?

You become a lived experience leader when you recognise that there are systems in place that stop a person like you from achieving something, even if you're able to achieve that thing yourself by sheer grit and will, you recognise that there shouldn't be that level of grit and will in order to achieve the things that you have.

To social impact organisations hoping to create interventions for people with lived experience of certain challenges, what should they bear in mind?

Re-traumatisation. That is a massive issue. People who have not been through those experiences, sometimes minimise them without meaning to. You might think because someone is okay to have spoken with you one on one about the trauma that they face, they are okay to speak to 20 strangers and become a lived experience mascot. You should constantly be verifying and re-verifying people's space, particularly in an employee situation, you should ensure that you're creating space for people to say “no” and set up boundaries. Similarly to consent, if I said “yes” a hundred times before, I can still say “no”.  You should also be considering how you are compensating people because it is a significant trauma situation.  I also recognise that I control where I bring up my racial based trauma and the context in which I use it. From an employee perspective, you don't have that much control over [the issue of retraumatisation] because you are sometimes hired due to you having lived experience and it can feel exploitative at a point. It is up to the leaders of the organisation to be cognizant of the power dynamics that they're creating with something as sensitive as someone's trauma. 

That’s a useful reminder for employers to take into account their employees as well as the individuals they engage with. How should social impact organisations approach lived-experience-led organisations?

When it comes to organisations that are seeking to partner with lived experience organisations. It's an equity conversation. Most organisations that have sought to partner with lived experience organisations in the past have sought to do so because they have not had the grassroots reach into a specific community they need to validate impact of their work to a funder. This has been the prevailing methodology, which people are now trying to correct. Just over half of the population are ‘help seeking’ in the more traditional ways e.g. where you can identify people to support via social media or mainstream spaces, events, conferences, email lists - the normal ways, which we've all relied on over time and codified. Over the past two years, particularly, but genuinely before that, most people that are desperately in need of support, have felt further shunned and distressed by their situation and have moved further and further away from mainstream spaces. This means that no matter how many emails you send out, they are not going to see it. 

Where they are, is in the WhatsApp groups or in the comment section of forums and of Slack channels, places that we have no mainstream access to. You need grassroots organisations and lived experience-led organisations because they know where they actually are. They can help you get those KPIs that you've said you can deliver. But what tends to happen is you give £2,000 out of a £200,000 contract to a lived experience-led organisation to do about 40% of your legwork in terms of getting people on board to your programmes. Then you put people with significant trauma, significant need of support into situations where there was no representation of people that have similar experiences to them. You give them the typical programme, and you expect them to do well. But what happens when they go through it? Some people are able to weather the storm of microaggressions, even in a ‘help seeking’ situation, and then go and succeed in a number of different ways. But most people will just sink further back into the grassroots and outside of the mainstream space. 

The reason Do It Now Now exists as an organisation is because we want to widen that mainstream space, and make it safe and sensible for Black-led grassroots organisations and the people they serve, that have been shortchanged for many years. I was a broke, underserved and under-supported lived-experience leader for many years, building Do It Now Now on a shoestring budget that meant I was spending the vast majority of my income to make things happen for my community. It shouldn’t be that hard to help people. We are trying to make it so that they are stronger and able to build on their own terms and widen that space. So the people who have previously been on the periphery can access the mainstream spaces, and can access it in a way that feels good, feels safe, and is effectively supportive.

Why is it necessary to engage with lived-experience insight?

Back in 2018, I started pitching for a Black Impact Fund [named Common Call], which was a fund that focused entirely on the Black population, not just Black-led, but Black focused. At the time, I was pitching it from a perspective of “you can't be what you can't see”. There is a future that we can have, but we're not giving enough people the opportunity to speak into that future. As a sector we innovate from a perspective of “who I'd like to have”, rather than “I need to have”. The person that “I need to have” invariably has better suggestions than the person who just wants it. The Black community is approaching systems from a “need to have” perspective, we need more resources, more support, more information.

Most mainstream organisations have a peripheral understanding of an issue to the level of depth the Black community might experience it. This is not a problem, however, until you consider that there is a single brushstroke that the mainstream orgs typically are painting everyone with; one size, one programme fits all. In my experience, it completely negates the fact that there are needs that the Black community has, when it comes to what we need in order to succeed, that are just not replicated in other communities.  

How does Do It Now Now engage the voices of people with lived experience?

We are lived experience led, the majority of our team and Board have direct lived experience of the issues we solve. I do often say though that the moment you get employed by Do It Now Now and have a stable job with a good income, you are one step away from the direct lived experience of our community. So we do everything we can to go back to our community, to include them and put them in the driving seat. We do focus groups around anything that we want to do. We pay people to sit in a room for two hours and talk to us about the different things that we're doing or whenever we're about to go down a route. 

What practices can ‘mainstream’ organisations adopt to engage more equitably with lived-experience-led grassroots orgs?

Let’s take funding. For most organisations, a one to one or small group discussion where a fund manager breaks down the questions in the application form, takes questions and describes things patiently, would be a ‘nice to have’, although they may not need it. However for a [lived experience-led organisation] that is making £20,000 a year and the directors are contributing significantly from their own money to remain in operation. They need to have that conversation, because that's the difference between them continuing to spend their paycheck on this charity or not.  That is what Black lived experience leaders are actually doing. We surveyed 400 and on average they were contributing 60% of the money necessary to run their organisations, just like I was for 4 years before Do it Now Now became stable. That came to just about £8.6m a year. That’s an incredible commitment to make only to be met with difficulty when you try to formalise and gain support to increase and improve the impact you are already making in your community. It's not a one size fits all. It’s important to create capacity within [an application process] that allows the people that are most in need to get what they need from the process.

Also, remember that people's pride and values is their dignity and their ability to face the world. No matter how difficult things get, people will keep their values and beliefs. As a sector I have noticed that sometimes we sacrifice our respect for people that are in need to fit the quota and hit the KPI, but in fact this could be harming a population. Ask yourself:

• Are you giving them dignity?
• Are you listening attentively? 
• Are you supporting them in the way they want to be supported? 
• Are you paying attention? 
• Are you looking out for information rather than asking direct questions?
• Are they using the solution created?

It’s clear that we need to engage better with communities with lived experience to properly understand social issues, but in speaking to Bayo we were moved by the importance of considering how not to re-traumatise communities in this effort. Supporting and funding lived experience leadership in organisations, as the Common Call Fund, is a promising pathway to the future of giving lived experience a seat at the table, so that these organisations can provide services with a deeper understanding of, and connection to, social issues and the communities they affect.

Bio

Olamide and Eloise are On Purpose Associates. Olamide is part of the April 2021 cohort, and is finishing her second and last placement at Impact on Urban Health. She is staying on with Impact on Urban Health as a Portfolio Manager. Eloise is part of the October 2021 cohort and is finishing her first placement at Do it Now Now. Both organisations are partnering on the Transformational Leadership programme, a programme to improve health inequity in Lambeth and Southwark by providing leadership development opportunities for people from diverse backgrounds.

References:

1. Lived experience. Oxford Reference. (n.d.). Retrieved March 10, 2022, from https://www.oxfordreference.com/view/10.1093/oi/authority.20110803100109997.
2. McIntosh, I., & Wright, S. (2019). Exploring what the Notion of ‘Lived Experience’ Offers for Social Policy Analysis. Journal of Social Policy, 48(3), 449–467. https://doi.org/10.1017/S0047279418000570
3. Woodruff Smith, D. (2013, December 16). Phenomenology. Stanford Encyclopaedia of Philosophy. Retrieved March 10, 2022, from https://plato.stanford.edu/entries/phenomenology/
4. Black-led Impact Organisations: The Lived Experience, March 17, 2022, https://www.doitnownow.com/blog/insights-into-the-lived-experience-of-black-led-impact-organisations?utm_source=DiNN&utm_medium=Social+media&utm_campaign=LEF_report