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Ep 58. James Watson-O'Neill, CEO Sense: Shifting power to disabled people
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In this episode, I am joined by James Watson-O’Neill, CEO of Sense, for a conversation about what it really means to create a world where disabled people are connected and included.
Sense supports disabled people with complex needs to communicate, experience the world and fulfil their potential. The £100m+ charity currently supports over 30k disabled people and families in the UK.
The charity has recently launched its new strategy, Transforming Sense, together — a three-year plan shaped by the voices of over 3,000 people connected to Sense.
At the heart of that strategy is a commitment to breaking down barriers and shifting power to disabled people. It connects directly to the social model of disability: the idea that it is society, services and institutions that must change so that disabled people experience greater connection, choice and control over their own lives.
We are speaking at a moment when disability rights and broader protections in the UK feel deeply contested.
Too often, disabled people are treated as if the problem sits with them — rather than with the systems, environments and attitudes that exclude them.
In this episode, we explore Sense’s new strategy, the realities facing disabled people, what it means to be genuinely inclusive and the extent of polarisation across society today. James also challenges us to think about what our collective responsibility as civil society leaders is at this moment - and how we rise to meet it.
Recorded June 2026.
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Transcript
Introduction to the Charity CEO Podcast
00:00:00
Speaker
You had to have had the boldness to have imagined and believed in that possibility decades before. That's what we're doing at SENS. We believe that it is possible to remove the barriers that disable us and disable the people even with the most complex needs. We truly believe in that.
00:00:17
Speaker
I don't expect to deliver that necessarily in my tenure as chief exec and that's absolutely fine. We will make progress. We will make progress. And if my success has achieved that, fantastic. I look forward to them doing that.
00:00:30
Speaker
But we must make progress towards it.
00:00:41
Speaker
Welcome to an exciting new season of the Charity CEO Podcast, where we bring you the stories and insights of remarkable leaders who are changing the world for the better. We talk to the movers and shakers who are driving positive social change, inspiring you to think big, act boldly, and make a difference.
00:00:57
Speaker
A huge shout out to our incredible global community of listeners spanning over 55 countries. Your thoughtful comments and feedback continue to fuel this growing movement, and we couldn't do it without you.
00:01:09
Speaker
To all of you who pour your hearts and souls into making the world a better place, especially those of you in the charity and non-profit sectors, thank you for the tireless passion you bring to your work. This podcast is for you.
00:01:21
Speaker
I'm Divya O'Connor, and here's the show.
James Watson O'Neill on SENSE and Inclusivity
00:01:25
Speaker
Today i am joined by James Watson O'Neill, CEO of SENSE, for a conversation about what it really means to create a world where disabled people are connected and included. SENSE supports Deaf-Blind people with complex needs to communicate, experience the world, and fu fulfill their potential.
00:01:41
Speaker
The charity has recently launched its new strategy, Transforming s Sense Together, a three-year plan shaped by the voices of over 3,000 people connected to s sense. At the heart of that strategy is a commitment to breaking down barriers and shifting power to disabled people.
00:01:56
Speaker
It connects directly to the social model of disability, the idea that it is society, services and institutions that must change so that disabled people experience greater connection, choice and control over their own lives.
00:02:10
Speaker
We are speaking at a moment when disability rights and broader protections in the yeah UK feel deeply contested. Too often, disabled people are treated as if the problem sits with them, rather than with the systems, environments and attitudes that exclude them.
00:02:25
Speaker
In this episode, we explore census new strategy, the realities facing disabled people, what it means to genuinely be inclusive, and the extent of polarisation across society today.
00:02:37
Speaker
James also challenges us to think about what our collective responsibility as civil society leaders is in this moment and how do we rise to meet it. It's a fascinating conversation.
00:02:48
Speaker
Enjoy. Today's episode of the Charity CEO podcast is brought to you by Eden Tree Investment Management. An award-winning provider of sustainable and impact investment solutions, Eden Tree is investing for a better tomorrow.
00:03:03
Speaker
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Speaker
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Speaker
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Speaker
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00:03:47
Speaker
Hi, James. A very warm welcome to the Charity CEO podcast. How are you this morning? I'm very well. Thank you so much for having me. It is a great honour to be here. Well, my pleasure. I'm delighted to have you on. I have four icebreaker questions for you. Yeah, let's do it.
00:04:03
Speaker
Question one. Share with us something about yourself that people wouldn't typically know. That's a great question. i often answer this sort of question by sharing a little bit of what my life was like before I joined the charity sector. So a long time ago in the ninety s I auditioned to be in a boy band at Pineapple Dance Studios in London.
00:04:24
Speaker
I did not make it very far. Brilliant. Was that singing or dancing or both? Well, I'd hoped it would be singing, but sadly for me, dancing was the first round. So I was kicked straight out of the competition. Oh, well, there we go.
00:04:37
Speaker
There we go Question two, what would you say is your professional superpower? Well, it's interesting. i have a friend who's a ah coach and he often talks about superpowers as the thing that we think everyone else can do.
00:04:54
Speaker
But in fact, very few people can do. So it's I think it's often something that we're not very aware of or that we overlook, maybe. So I don't i don't know. i suppose my my great love and interest is in communication and in audience.
00:05:10
Speaker
So maybe it's about thinking about the audience. I love that definition. Question three, share with us a quote or a motto that inspires you.
00:05:21
Speaker
Well, A big part of what has shaped me as a leader i was my first job in the sector, and that was at the NSPCC 2001.
00:05:33
Speaker
And I worked with an amazing group of women who really taught me a lot about life and about everything. And it sort of picked me up and shook me in put me back down again.
00:05:45
Speaker
But there was a poster on the wall that said, difference is good, full stop. And I really came to understand and respect how important that idea is. And it's really shaped me as a leader.
00:06:01
Speaker
So I don't know if anyone ever, i don't know if that quote is attributed to anybody, but it it was a it's a very important part of my life story. and And those women really shaped who I am through that lens.
00:06:16
Speaker
I talk about it often in my but in my work and and so on and because it had a really profound impact on me so that would be I guess one of the quotes that inspires me but I quite like a quote I'm quite inspired by quotes I love that difference is good yeah and that leads us nicely to our final question James what is one question that you think charity leaders should be asking themselves right now well the question I'm often i talking to leaders about, ministers when I can get time with them, but kind of system leaders, I suppose, more broadly.
00:06:53
Speaker
The question i I like to ask is, who are you expecting? So if you're in charge of a system or a process, as as many of us are, when it was designed, and it perhaps wasn't designed by you, but your predecessors, who were you expecting when it was designed? Because the answer is often the designer.
00:07:13
Speaker
the person who designed it and designed it for themselves. When, of course, what I hope could be the case is that we design it for as many people as possible, for the multiplicity, for the diversity of people, and that we really think about everyone's access needs, everyone's lived experience. And and that means that the system is probably a poor answer and that system is bad and person is good. And so the the question I like to ask is, who are you expecting?
00:07:42
Speaker
And I think that's a brilliant note on which to jump into our main conversation. Thank you so much again, James, for joining me today.
Origin Story of SENSE
00:07:50
Speaker
Let's start off by hearing about your organisation, Sense, where you are the chief executive. Tell us about its origin story, its mission and work.
00:07:58
Speaker
Sure. um Sense is a really amazing organisation. Of course, i'm I'm biased, but I've been in post for coming up to 18 months and I fall in love with the organisation more and more.
00:08:12
Speaker
um And I'm just still new enough to to see it as something that I admire as an outsider almost. In terms of its history, I'm beginning to have an impact, of course, as as all of us are at SENS, but I admire it very, very much. SENS was founded by two amazing women, by Peggy and Margaret in 1955.
00:08:36
Speaker
Both Peggy and Margaret had children, babies who were deafblind, and they were introduced by chance, apparently, in a medical setting in central London.
00:08:48
Speaker
And they understood together that there was very little support available for deafblind children and for parents of deafblind children. And so they set about creating a network of parents of deafblind children and Sense was born.
00:09:05
Speaker
And in our building in Birmingham, we have framed the first newsletter sent out to their new network by Peggy, which talks very humbly about her and Margaret's aspirations for ah what would become since.
00:09:22
Speaker
And so from the very beginning of the organisation, there was this incredible... connection between the practical needs for families of disabled children and a sense of organising, sense of bringing people together.
00:09:38
Speaker
Peggy and Margaret didn't get the help they needed and then just went home and did you know and and looked after themselves. they They were committed to connecting people together and really thinking about the bigger difference they could make.
00:09:52
Speaker
So this network was begun and and and has become a SENSE over the years. But that commitment to social change has always been part of the organisation's history.
00:10:02
Speaker
And there's a wonderful photograph in the 80s of disabled people from disabled people's organisations and also colleagues from SENSE trying to influence the government at the time.
00:10:14
Speaker
And it really... holds together our current vision for Sense, which is this combination of providing extraordinary services directly to disabled people with complex needs and their families and also campaigning for for social change.
00:10:30
Speaker
So we we're a relatively big charity now. We have a turnover 106 million this year. We have 5,000 people at Sense, so colleagues, volunteers,
00:10:41
Speaker
And we operate in England, Wales and Northern Ireland. We have about 200 locations, including 108 charity shops. And it's an amazing organisation, 24-7 organisation full of brilliant people doing really fantastic work.
00:10:57
Speaker
I'm visiting all of Sense and i've i've done 101 visits so far and I have 96 left to go. and it's one of the best parts of my job, meeting the people we support, the people who work and volunteer with us,
00:11:10
Speaker
It is a ah shot in the arm of joy and I'm super, super proud of what we're doing. Really, really proud. Such an incredible story and indeed such important work. And James, can you give our listeners some wider context here? Give us a little bit of the history on disability rights and tell us about disability rights in the UK today.
The Social Model of Disability
00:11:32
Speaker
Sure. I mean, that's ah that's a big question, right? Yeah, we are one of very many organisations working in the field of disability rights, I i suppose one might say.
00:11:43
Speaker
and there are a couple, there are very many things one could say about disability rights, but I'll mention a couple of them. Back in the 80s, I think, disabled people designed an approach, a response to the way disability is thought about and developed what we call the social model of disability, which So the understanding that as disabled people, people with conditions are disabled by society.
00:12:11
Speaker
So the perfect example of that is a wheelchair user who perhaps can't access the building because it only has steps up to its front door. But if it had a ramp, they would not be disabled because they would be able to get through the front door.
00:12:24
Speaker
And they might go home to an adapted house where their kitchen has been designed with their access needs in mind and and they're not disabled. They're still a wheelchair user, but they're not disabled.
00:12:34
Speaker
So the idea that society disables us, the society we have created together, both in terms of attitude and built environment and other things disables us. And we can change that. We don't need to be disabled. We could all live together in a better way. So that's a really important, I think, notion to bear in mind. it has a big impact on society. the way we work across disabled people's organisations and disability.
00:12:56
Speaker
But in sense too, purpose is is written through the lens of the social model. So our our purpose as a charity is to break down barriers alongside disabled people with complex needs. And that breaking down barriers is absolutely in the context of the social model.
00:13:12
Speaker
But the other thing I'd say, because stick is it's kind of topical, is the Equality Act, So the Equality Act superseded the Disability Discrimination Act, the DDA, which lots of people were aware of that came into force in the 90s.
00:13:25
Speaker
The Equality Act 2010 brought together nine protected characteristics into legislation, including disability, and it protects our right as disabled people to not be discriminated against in the workplace, for suppliers of goods and services to be ready for us, particularly public sector organisations,
00:13:45
Speaker
So there's lots of protections in law, although some of them are at risk currently for disabled people in recognition that hopefully difference is good, that all people are valid, that all people are equal.
00:13:58
Speaker
But in order for us to have an equitable approach to life, some people need different things to others. And so all of us across the disability sector work try to work together. And I'm really interested in in how we can do more of that, of course. I think we really are better together.
00:14:14
Speaker
We will all work together to try to and improve the lives of disabled people. And a sense, we focus particularly on disabled people with complex needs. So that's kind of what it says in the tin. That's whatever it means to each individual person. We try not to define that because it it would be a bit at odds with the social model if we started to try and make that a very technical definition.
00:14:35
Speaker
We believe in a more a kind of the image I often talk about is a bit like ah a gazebo on a garden lawn, as in one of those, you know, one of those tents that doesn't have any sides.
00:14:46
Speaker
So you can come and go as you please. There's no walls, there's no doors, there's no gate to go through to kind of come into sense or come out sense. We're here to support you. And if you identify as a disabled person with complex needs, then we absolutely will work with you and are here for you. i think that freedom, that fluidity, that's what disability is often, that many of us have fluctuating conditions, have different needs in different circumstances, we'll identify in different ways at different times.
00:15:15
Speaker
It feels really important that all of us who work in disability have a ah fluidity about the way that we work. I often talk about the messiness of disability. is not neat. It cannot fit into a box and nor should it. I don't think people fit into boxes.
00:15:31
Speaker
I want us to ah want a world where we enjoy the diversity and difference of people in all of its messiness. And that's certainly something that we experience and and enjoy at sense.
00:15:44
Speaker
It's interesting to hear you talk about the messiness of disability, James, and essentially not fitting into a box. And in the context of the risk to some of the protections that currently exist, the government has proposed a number of changes to disability benefits, perhaps looking to fit people into boxes that they don't fit into.
00:16:05
Speaker
And in your view, what would be the potential impact of some of these proposed changes? Well, they're extraordinary. The impact is extraordinary. We saw last year the intended changes to welfare benefits, which thankfully the government U-turned on most of that, or importantly, not all of it, but most of it.
00:16:25
Speaker
And that was wonderful, wasn't it? So we we saw a real surge of feeling across the country and since participated in in the work, but of course many organisations did too, to encourage that U-turn.
00:16:39
Speaker
And it was brilliant to see It's wonderful to to know, to experience that campaigning really can make a difference, that it really is worth standing up and fighting for what you believe in because it can change something. So it it's wonderful. It does doesn doesn't happen all the time, does it? So was wonderful to see.
00:16:55
Speaker
Even for a government with a significant majority, it was it's great to see. There are still proposals and also rumour and expectation, sadly, that there will be more attack on welfare benefits.
00:17:09
Speaker
And it's it's complicated. You know, we often see these arguments conflated into soundbites and, you know, for reasons we all understand. But it's tricky. One of the things that gets talked about lot is personal independence payment. So the amount of money one can receive as a disabled person to help people.
00:17:30
Speaker
retain one's independence. In fact, PIP, as it's known, is a relatively good reflection of the social model. It understands that being disabled in today's society, sadly, can be more expensive.
00:17:43
Speaker
And therefore, it is right as a society that we support disabled people with those costs. Scope has done some really brilliant work over many years on the extra costs of being a disabled person, which of course PIP doesn't actually cover, but it comes some way towards covering.
00:18:00
Speaker
But there's a big review of PIP. The Minister for Disability, TIMS, is doing a review and and there's a degree of co-production around that review of involvement of disabled people. So we we, of course, are engaging with that review and and hoping to influence its outcome.
00:18:15
Speaker
But the the big spectre here is what some parties are often talking to about, the the kind of growing welfare cost. And I think it's sadly the case that there is rarely an opportunity for a truly broad discussion about what kind of society we want and and whether a growing welfare bill is in fact a bad thing.
00:18:42
Speaker
Is it a bad thing? There are lots of things that have changed in our society in my lifetime. There are many more disabled people who live much longer lives than would have been the case 50 years ago when I was born, for example.
00:18:55
Speaker
We have fluctuating generations, fluctuating birth rates. I don't agree with the initial default setting that growing welfare bill is bad.
00:19:07
Speaker
I think it's and it's interesting to, if we if it were possible to discuss that a bit more openly. But of course, it's used as a as ah a straightforward threat, which is really, really sad to see. You've got a lot of work to do as ah a coalition of of people and organisations who are interested in people living
Impact of Changes to Disability Benefits
00:19:25
Speaker
good lives. I mean, we we know from the the threats to welfare reform last year, for example, that that immediately caused real concern around suicide within disability community.
00:19:36
Speaker
It's really well reported. We have evidence of it at CENT, but also other organisations that run helplines. This stuff has direct impact on people in lots and lots of different ways. And there's got to be a better way of doing this.
00:19:51
Speaker
I think the government are trying, and we're right in the middle of that work at the moment. But I do worry significantly about the impact on disabled people. Disabled people with complex needs often get lost in these debates.
00:20:04
Speaker
We fight very hard, for example, the recent Melbourne review on young people who are looking for education, employment or training. and We try very hard to influence that in terms of recognising this particular experience of disabled people with complex needs, many of whom will never work.
00:20:21
Speaker
for whom work is not a likely outcome. and And we've had some success in influencing that language and and the way that those people are represented. But it's tricky. It's really, really tricky, but so important that we all turn up and that we try to influence. And and I suppose, make the debate as sophisticated as it can be.
00:20:41
Speaker
There's a real risk that it it it feels like it's going to the lowest common denominator i'm sure you see that too diva Yes, I was just reflecting there, James, on what Nigel Farage, the leader of Reform UK Party, has been saying just this week about calling for the repeal of the Equalities Act. And now I think that debate has been polarised around race and the recent riots, etc.,
00:21:06
Speaker
But that will have a profound impact on all of these protections. And I'm curious to hear more about what more do you want to see from the current government? I mean, how can we genuinely make this a moment for change?
00:21:20
Speaker
Yes, Equality Act means a lot to me personally as ah a gay man growing up with an unequal age consent, with no right to adopt, no right to join the army, ah no right to marry.
00:21:32
Speaker
you know, i've I've gained a lot of rights in my lifetime, which i fear more and more I may lose again in my lifetime. And as a disabled person, I i also, you know, welcome the protections I've afforded through the Equality Act And the intersectional view that could be possible more through the Equality Act, I think is important because, of course, disabled people with complex needs are in every community, not just a separate box. So when we talk about trans rights, when we talk about older people, when we talk about issues of faith, we're also talking about disabled people with complex needs, although they are often invisible in those debates.
00:22:11
Speaker
So I don't know how serious the threat to the Equality Act is. of course, I worry that it is serious, but I i hope that it it won't be something we really have to engage in.
00:22:22
Speaker
There are much, much more real and present threats to equality, as as you mentioned, through welfare reform, through the review of PIP, through some of the very technical changes that are happening around whether or not young disabled people have access to the health component of universal credit, which is on its way to go, i believe.
00:22:41
Speaker
And those will have real, genuine impact um on people's lives right now. um If we were able to reframe the conversation towards opportunity, i love the reframing that actually a young person did, I think, in that recent Melbourne Review work where I don't know his name, but I saw an interview with a ah young person who was calling for us to stop saying NEAT with an N, not in employment education training, and to start saying LEAT with an L, looking for education, employment and training. And I think it is as simple sometimes as that reframing.
00:23:16
Speaker
I think the work that the Milburn Review did, certainly the headlines of that review, asking us to see the problem being the system, not not the people, is is brilliant. it's That's great, right? that's that's That's really wonderful to see.
00:23:31
Speaker
What I worry about is is how big a cultural shift is required for hour for our government and and and and so many of the systems for us to really change in order to do that. But I think we have to be optimistic, right? We have to be positive and hopeful that that is possible. It has to has to start or continue somewhere. And the Melbourne Review, was ah of course, their first report was just a diagnostic report. Their recommendations will come in in in the autumn.
00:23:57
Speaker
And I hope, again, that we can influence some of that and see greater recommendations specifically aimed around disabled people with complex needs. This is the time we live in. i often talk to people about leadership and and that that in 2026, leaders,
00:24:14
Speaker
Our responsibility is around equity, diversity and inclusion and the climate crisis. I but i believe that as a generation of leaders, that those are our responsibilities. If we were leaders in the late 1940s, we would be post-war leaders.
00:24:31
Speaker
We are leaders in 2026. And I believe that our context is around EDI and the climate crisis and and what we do with those opportunities. I want for us collectively to do a really good job of those obligations, of those opportunities, because future generations of leaders will have different responsibilities and will, should, I think, they have a right to expect us to have risen to these challenges now, not to pass them on to future leaders?
00:25:01
Speaker
Because arguably the the leaders in post-war Britain, developed the and NHS, you know did the things that they did. I'm not suggesting any of that's perfect, of course, but what is our response to the opportunities that we have as leaders? We must deal with that now.
00:25:17
Speaker
And talking about reframing opportunity, reframing the narrative and really shifting power, I know that you have recently launched your new strategy at Sense.
SENSE's Three-Year Strategy
00:25:27
Speaker
Tell us about this three-year plan.
00:25:29
Speaker
Yeah, thanks, Vivian. It's so exciting. we're We're really proud of it. And would pay tribute particularly to a colleague, Harriet Edwards, who led the work for us. She's our Director of Influencing at Sense.
00:25:44
Speaker
We spoke to 3,000 people. We really worked very hard to engage a lot of people and thinking in what the future of a sense should be. Disabled people with complex needs and their families and the people who support them spoke very clearly to us. They told us that disabled people with complex needs want to be included, independent and in control very clearly.
00:26:11
Speaker
And sometimes... that was so clearly articulated as being about needing to be able to get out of the house and go to the shop.
00:26:23
Speaker
So the everydayness of that example, I think is is really important to hold on to that. There are many disabled people with complex needs who don't have the day-to-day liberty or opportunity that many non-disabled people enjoy.
00:26:39
Speaker
So that's, I think, quite a humbling element of the work that we did together. So we created a strategy for s Sense, which, as I mentioned, has has a purpose for us, a mission for us, of being here to break down barriers alongside disabled people complex needs. So it feels very important to us that we are not doing this to or for anybody, but alongside disabled people with complex needs. At the heart of our strategy is the um clear intention to make sure that the the power is back where it belongs with disabled people with complex needs.
00:27:17
Speaker
And so we have ah a big focus on co-production, a huge focus on shifting power. we want to employ very many more disabled people at Sense. We have new trustees joining us, some of whom are disabled people, some of whom are parents of disabled people.
00:27:31
Speaker
That lived experience and the diversity of that lived experience is very important to to us at Sents, but to the success of our strategy. If we want to support disabled people complex needs to be independent, included and in control, they told us that this is how we need to behave. This is the organisation we need to be.
00:27:51
Speaker
So we developed a three-year plan that that takes us forward over the next three years in that. And to some extent, that that plan is is foundational and transformational. So the organization has been around for 71 years.
00:28:05
Speaker
We need to do some work on modernizing some of the ways that we work, some of the ways that we deliver services and support. And also really thinking about the future for disabled people and and what that really needs to mean, making sure that disabled people with complex needs are involved every step of the way.
00:28:25
Speaker
So we have a real focus on transformation, both of our operational services and our data and technology. Lots of new systems needed to support our work internally and externally. it's going to be a really exciting new three years for us. We're in month three, coming towards the end of month three of year one.
00:28:42
Speaker
And so we're keeping a very close eye on our performance to plan. It's going well so far and lots of interest, lots of engagement. The purpose of Sense begins with the word we.
00:28:53
Speaker
We're here to break down barriers and so on. And that we is intended to not just be we, us at SENS, but we as broadly as possible. So you, Divya, your listeners, families, commissioners, ministers, everybody, we know that we can't do what the sale people complex needs to do on our own. It has to be a ah real team effort. So we invite you in we We want everyone on board with us if possible.
00:29:18
Speaker
So really transforming SENS together. which is the headline. Yeah, absolutely. And like everything's better together, isn't it? You know, I think that's yeah my life experience, definitely.
00:29:30
Speaker
but Let's do it together. Yeah. James, you and I have known each other for a few years now, and I have previously heard you describe activism as a way of being. You talked a little bit about your background earlier.
00:29:42
Speaker
Tell us more about where does that sense of activism come from and what has led you to where you are today? Thank you, yes. And I'm proud that we'd we've known each other for a little while. And yeah, I've watched your career with great interest. Oh, thank you.
00:29:57
Speaker
And your activism too, with great interest. I suppose I noticed during COVID that there was some work being done on leadership, particularly in America, I listened and engaged with a lot of Brené Brown's work and and some of her kind of peers.
00:30:14
Speaker
I noticed that the word activism is being used in a slightly different way. particularly in relation to the new generation, Generation Z's expectation of of work and and I suppose the position that their employer might be taking.
00:30:29
Speaker
And so i'm i'm I'm interested in activism as a good thing, as ah not as a dirty word, right? As a potentially politically neutral, but I suppose also politically at party political neutral, I suppose, let's say, and a politically active state.
00:30:46
Speaker
I think if you have any experience of minoritisation, and many, many people do, then you understand what it is to stand up for your rights or to feel unequal or unwelcome or misunderstood.
00:30:59
Speaker
And ah really interested in how we can broaden our world and our society to welcome people, to expect different people And I grew up as a gay man.
00:31:13
Speaker
I came out boarding school at the age of 17. lived either at boarding school or in army barracks because my parents were in the army and moved all over the world. So I had a lot of experience of of living in very ah very strict environments, I suppose. had particular expectations around what being a man might be.
00:31:32
Speaker
And I also grew up with a lot of privilege. i grew up as a white cisgender man and... was taught to be a certain type of man. And my experience of being gay and coming to terms of being gay and learning to celebrate being gay has ah been a lot about unlearning, a lot about like removing from myself the homophobia I learned and then trying to use that experience to also remove the racism that I learned, the misogyny that I learned, the disablism that I learned, and rejecting the prejudice I see, but that so easily can be subsumed.
00:32:12
Speaker
So I suppose I'm interested in activism as an active participant in society, as if you turn up and and and are in community with people,
00:32:22
Speaker
I think you have a responsibility to, if you feel safe to do so, to share your perspective, to challenge, to ask questions, to expect. I think that's a great that's a great thing. it can need some privilege and I i respect that.
00:32:38
Speaker
But yeah, I'm interested in the participation of us all, I suppose.
James' Perspective on Activism
00:32:42
Speaker
And that's what activism really means to me. I love the way you've described that, James. And one of the things I am curious about in the work that you're doing, because on the one hand, you of course have lived experience as a deaf person. On the other hand, how do you lead an organisation working to address these needs without absorbing the weight of the whole system? And what does this work really require of you personally? It's definitely something I think about a lot and and has occupied me a lot.
00:33:14
Speaker
In coming to Sense, in my last role as Chief Executive Sine Health, an organisation I am very fond of and feel very proud of, and an organisation led by deaf people, in coming to Sense, I feel I suppose slightly more comfortable that the the purpose of the organization is is slightly less about me or that the target beneficiary group is is slightly less about me.
00:33:41
Speaker
I hope that my lived experience as a disabled person is useful to the organization, but I'm not of the target community, if that makes sense. Some of this can feel a bit dancing on the head of a pin, really.
00:33:51
Speaker
But those nuances can be really important and in day to day. I still, though, um one of very few disabled people leading large organisations that are supporting disabled people, and and and I worry about that a lot. I think it is extraordinary that disability still exists in this space where is entirely acceptable, apparently,
00:34:18
Speaker
that most of the organisations that support disabled people, certainly are the larger ones, are led by non-disabled people. And brilliant, brilliant non-disabled people who who I love and admire, I i need to say.
00:34:32
Speaker
However, it it does feel weird. I'm really proud of Simon Blake's leadership of Stonewall and I expect the leadership of Stonewall to be majority, hopefully not exclusively, but majority LGBTQ plus people.
00:34:46
Speaker
I don't understand why we don't have that expectation of disability organisations. And I hope that in hopefully the not too distant future, we will all agree that this period we have been through was weird and has ended I think we need to kind of take over add more.
00:35:03
Speaker
And I want to encourage more disabled people to look for and expect leadership opportunity. And we have a huge responsibility, a sense, to welcome more disabled people into the organisation, to create more opportunity for leadership development, to to do all of that work.
00:35:19
Speaker
But it feels extraordinary to me. There's that wonderful, or it's a terrible photo, but it's it it prompts a wonderful debate, a terrible photo. I think it's, If my memory is correct, I think it's the Trump 1.0 leadership who are having this meeting about women's health or women's rights. And the the photo is entirely of men crowding around a kind of cabinet table.
00:35:43
Speaker
And sadly, that is something that many women will be very familiar with. It feels similar that so often disability rights is led so often so exclusively by non-disabled people. Again, non-disabled people, unlike perhaps Trump 1.0, doing their absolute best and and often making really significant difference.
00:36:04
Speaker
But it just isn't OK. And I really want to call that out. There are very many disabled people's organisations. And for for anyone who's not aware, a disabled people's organisation is is is often most often understood to be organisation where 75% at least of its leadership, including its board are disabled people that is not true at sense and and it's not true of of most large disability organisations but there are very many disabled people's organisations or DPOs as they're known in the UK that are run disabled people but they're often small, they're often fragile, they often struggle to be funded properly and
00:36:42
Speaker
There are many, many people who run those organisations who'd be better place to talk about them than I am. But I hope that we can see a real shift in disability power. And there are very many disabled people who are more than ready to take those leadership opportunities. We just have to break down some barriers, right?
00:37:00
Speaker
So let's do that together. And of course, they are disabled people with a vast value of lived experience that isn't purely from a disability perspective. One person I would describe would Michelle. Michelle Daly, who runs the Alliance for Inclusive Education.
00:37:16
Speaker
She's someone I've worked with briefly in the past and who I really admire. She's a black woman who is a wheelchair user and who brings all of her lived experience to work, as do very many other people in disability leadership.
00:37:30
Speaker
But so often... Disabled people as leaders are fairly invisible. So we've got a lot more work to do as a sector to open doors and provide some ramps in every sense of the word to enable disabled people to your leaders. And I'm passionate about Sense turning up to do that.
00:37:46
Speaker
But I want to encourage everyone to do that. Of course I do. I absolutely agree with you that representation and lived experience is so, so important. And we are sadly in an environment where the flip side is that that is being weaponized.
00:38:03
Speaker
And I was curious to know if you have any strategies that enable you to cope with that sort of barrage and if you have any advice to other leaders who may be in a similar place or space.
00:38:15
Speaker
Well, it's interesting, isn't it? I think it's something that as leaders we talk about a lot at the moment, and for good reason, not just because it's topical, but because I think we need space as leaders to check in with one another, to understand one another's responses.
00:38:31
Speaker
And they are different. You know, I've had some really fascinating conversations with colleagues in the sector about different approaches here. What comes to mind the conversation a few months ago with Sarah Hughes, Chief Executive of Mind, someone who I really, really deeply admire.
00:38:48
Speaker
It was great to see her get a CBE in the recent birthday honours richly richly deserved yes shout out congratulations to sarah absolutely fantastic and she's a ah leader again who i i believe who i perceive to be someone who who is leading as themselves and who is you know breaking down a lot of barriers in terms of what it means to be a leader how to behave as a leader a fantastically authentic leader And I think Sarah and I have had really interesting conversations about how do we engage with the whole spectrum of political parties? What's our role as leaders to do that?
00:39:25
Speaker
And I think you know something she and I would have in common, I'm sure, is that I start from a position of love, really. I know it may sound a bit thin, but I think it's anything but.
00:39:37
Speaker
I think in many ways, love is the answer here. I'm no Greek scholar, but my thin understanding is that in Greek, there are many words to indicate love and only one of them being about romantic love.
00:39:51
Speaker
But there are lots of words around love that that mean charity, that mean the kind of love that we bring to leadership, that A positivity, an optimism, a belief in people, a willingness to see good, an expectation that people are doing their best.
00:40:07
Speaker
If we can compress all of that together and lead with love, then we will be on the front foot, that we will be in the best place in make progress. I really genuinely believe in people.
00:40:18
Speaker
i really believe that people are good. There's a phenomenal and life-changing podcast episode where Brené Brown is just, she's actually just reading from one of her books. I think it's Daring Greatly, where she talks about this amazing story of her staying somewhere to deliver a talk and having to share a room with a woman who's smearing cream over a sofa cushion. know that's a terrible description, but it's such a it's such a worthwhile listen.
00:40:44
Speaker
But the the headline of what she talks about really is that people everyone's doing their best, that you you don't know, I don't know what's going on for people, and that people are showing up as their best selves.
00:40:56
Speaker
I try really hard to take that into my work. And I have listened to and read the transcript of that episode more times than I can remember. I don't see that attitude in some of the party politics we see now. And I think that is their deficiency.
00:41:14
Speaker
I think that the way to overcome some of the challenges that we have at the moment is to really lean into the love and to have hope. I have a huge amount of hope.
00:41:24
Speaker
I see that in the work that we do at Sense. I'm also connected to other organisations through non-exec roles and I'm on the board of ah anhs Mental Health Trust in South West London and I see extraordinary good practice and optimism and love in the work that my colleagues do there and extraordinary expertise.
00:41:49
Speaker
I'm a maker in my spare time. i I make clothes and quilts and all kinds of things and the degree of skill and precision that's required not of me, I'm not that good, but of of other people who I admire who do that work and who you could sit opposite them on a tube and never know that that is their brilliance.
00:42:09
Speaker
There is such joy in people. And i I love the fact that I get to see that. We get to see that in our roles in this sector. That is more powerful, i believe, than any darkness, right? We get to shine that light.
00:42:23
Speaker
And so I think we should do that more. Let's lead with love. And again, I think it can sound thin. i think it's anything but. I think it's it's it's what we need. And talking about love and hope, what else gives you hope at this moment, James?
00:42:39
Speaker
To be honest, i find hope in lots of places. i find a lot of hope in my colleagues at Sense. I'm lucky to work with a very talented team of ah chief officers.
00:42:52
Speaker
And i I really believe in the idea that one should try to recruit people who are much better than oneself. And I feel like I've achieved that ad sense. that Sometimes that's quite scary because I'm like surrounded by such brilliant people.
00:43:04
Speaker
But I think... One of the great privileges of being a chief exec is that thing that no one tells you, right?
Finding Hope and Motivation in SENSE
00:43:12
Speaker
which you actually Because you don't actually do anything.
00:43:14
Speaker
you You kind of pass everything else off to other people, but you don't you don't do a lot, right? you've kind of You're kind of meant to not do in order to be free to keep not doing. It's very strange job.
00:43:26
Speaker
But what that affords you, therefore, is the opportunity to see so many other people doing such brilliant things so well. I get to go to events and be in meetings or read reports that are just constant evidence of how good people are. And that has nothing to do with me, literally nothing to do with me.
00:43:49
Speaker
And it's wonderful. It's really inspiring. It's really motivating. I see that in in our building in Birmingham at Sense. And we a big Birmingham building just in Selly Oak, just outside of central Birmingham.
00:44:00
Speaker
And when you come into that building, you walk through a kind of large foyer and there are services that we operate in the ground floor there. So there's a college, there's ah a day centre, there's lots of stuff going on.
00:44:13
Speaker
And every time I arrive, I can see somebody working with someone. I can see a person being supported, whether that's a college student or a day centre attendee.
00:44:25
Speaker
And I i've relish the the opportunity just to witness, not I can't even hear what they're saying, but to witness the engagement of the two people, of the person we support and the person the colleague who's supporting them.
00:44:39
Speaker
And That's a wonderful, fantastic thing. i get to see that all the time. I'm like the luckiest man alive, I think, in this job. I'm not sure there are many charity chief execs that might agree with you, James, that we don't do anything. But I understand what you mean in terms of shaping and guiding and driving things forward and essentially being in a position to unlock the brilliance in others so that yeah yeah they and we can all deliver impact together.
00:45:08
Speaker
Coming on now to our closing question, what is one thing you would like people to take away from this conversation? Give us a final thought or reflection. Oh, that's interesting. Well, I'm i'm keen to turn the tables a bit of you and hear what reflections might be on some of the things we've talked about today.
00:45:29
Speaker
i really admire you and your leadership. And i wonder what your reflections might be, particularly on you know how we as leaders might cope with the polarized times that we're leading in.
00:45:43
Speaker
I'm, ah to be honest, much more interested in other people than I am in myself. So I might have a better takeaway once you've told me what what your answer to your own questions are. What do you think?
00:45:54
Speaker
It is a very fraught time, as as we can all see. And the polarization and the divides are getting very entrenched and very deep. And the whole othering of other people and sort of pitting people against each other. which I see the politicians doing deliberately. And it's a playbook that we've seen in the US, unfortunately, under the Trump administration.
00:46:23
Speaker
two Point Oil has been worse than the first one. and we are seeing some of that now, you know, come to our shores. And that is something that deeply, deeply worries me. I speak to to many charity sector leaders and I know lots of people are feeling that and you feel the burden personally. So as a woman of colour, somebody who could be described as ah as a migrant, even though I was born in this country, that is something that is concerning because of all of the dimensions that that brings. And at the same time, as chief executives, we are expected to to hold a lot of this, to protect our staff and our teams and still, you know, make sure the organizations that we are leading are delivering the work.
00:47:08
Speaker
And talking about Sarah Hughes, and she put out a brilliant substack recently about accepting her CVE and the sort of turmoil that she went through with herself. But what she essentially was pointing to is about visibility and diversity and the importance with which we do need to step up as leaders and be visible and be vocal and always recognizing that that takes a lot out of us personally, you know, because we are human. But how do we connect up our humanity?
00:47:38
Speaker
And, you know, I love what you said earlier about leading with love. And it may sound a bit cheesy, but how do we all sort of hold hands together in the sector and almost create this impenetrable force? Because as ah a charity sector, we do have that power. And yes, Simon Blakes is doing some incredible things with Stonewall. And I see a lot of work happening across the sector, not necessarily in silos, but in pockets. And i wonder if there's more we could do to really create that network much more stronger so that we are a much more stronger force, you know talking, you know truth to power as one voice. Yeah.
00:48:18
Speaker
Yeah, I completely agree. And I worry too about experience of of chief exec colleagues and women for the global majority particularly and and what you are experiencing, as well as Jewish colleagues, as well as colleagues in Northern Ireland. you know there There are many, many colleagues who are particularly minoritised at this current time, which which feels extraordinary.
00:48:40
Speaker
I'm a proud trustee of NCVO, and I think Kate is doing a fantastic job of of leading NCVO as our still relatively new chief exec. I have high hopes for the civil society covenant and the work she's doing to lead on that. But I think and NCVO can't do it on its own, and nor can you know the group support Kate on that work. We have to do it all together.
00:49:02
Speaker
I'm a big fan of, i think we're all a big fan of not reinventing wheels, aren't we? So what do we already have? It may not be perfect, but what do we already have that we could use now?
00:49:15
Speaker
And I think the civil society government is a very big step forward. We all probably need to lean into it more and come together more. I think infrastructure is a particularly important part of our sector. I i spent several years as part of the civil society group and and I think the work that Deborah Alcock-Tyler, Jay Nide, Kate Lee and many others do in that space is so important, terribly underfunded often and overlooked, but actually incredibly important to our success as a sector.
00:49:46
Speaker
There are so many people, often I notice women, who are leading us in the sector towards a better future. I think if we can support one another and spotlight each other's progress, that's the great thing we have in our favour, isn't it? that That we're not in competition, that we we are in fact really of ah in one team, right?
00:50:10
Speaker
I really believe that's true. And I worked very briefly in the private sector before I joined the charity sector 25 years ago. And I love being proud of not only the organisation I work for, but the sector I work in. And I think there is more strength in our togetherness that we could plumb that we haven't haven't yet taken hold of.
00:50:30
Speaker
So let's do more of that. You know, let's celebrate one another even more. Absolutely. And I think there is something in that opening question that you asked, James, which is what is our responsibility as leaders in this moment in time? And how do we need to lead that suits this moment?
00:50:51
Speaker
Yeah. And I think it's great to have very high expectations of one another and oneself, right? In my team, when new chief officers join SENTs, I show them photographs in a slide presentation. I show them photographs and I show them photographs of the Million Man March and of Rosa Parks.
00:51:11
Speaker
and of disabled people in front of parliament as a way of being clear that this is what we're doing. This is what we're doing. This is the organisation joining. This is the expectation and aspiration that we have of sense and of the disability sector. Right now, this is the expectation, right? Don't be surprised in five or 10 years or whenever we achieve a moment of disability equality. This is what we were always trying to do.
00:51:34
Speaker
But I also show them a photograph of the 2012 Olympics, right? partly because many of us are of a similar-ish age and we we all remember where we were in 2012. And what I love is is how much planning went into that.
00:51:49
Speaker
I remember when the UK won the bid in 2005, I believe that was, seven years prior to the actual Olympics, and the work that would have gone into the bid, right? So There are people involved that never even were involved when the actual Olympics were happening. just took a lot of people, a lot of time, a lot of planning, right? Sign me up. I'm here to do the work. I don't need to be at the opening ceremony. Don't need that.
00:52:13
Speaker
But I'm absolutely here. It's that cathedral theory, isn't it, that we get to build a bit of it, but together, eventually, our successors will achieve it. That's cool. i don't I don't need the glory. i don't like That's not what i'm here for.
00:52:26
Speaker
I'm here for the kind of eventual success. but it takes planning and it takes like ambition and aspiration. like Those amazing people who somebody somewhere, I don't know if it was Sebastian Coe or someone else, sat down around a kitchen table and was like, shall we bid? Where will the Olympics bid? you what And then it was amazing, right? It was like surprisingly incredibly good.
00:52:48
Speaker
And actually one of the best bits of it was the volunteering, right? The people who came together, what were they called? Games makers, I think, or something like that. Games makers, yes. All the people who volunteered to be part. of like That was one of the best bits of our Olympics. So it's that kind of dream it, they will come thing. Like, let's dream really big and we can do it. I really believe we can do it. I believe in people.
00:53:09
Speaker
Crikey, we can do it. Let's do it. Let's do
Commitment to Removing Societal Barriers
00:53:11
Speaker
it. Yeah, and and I think that's such a great analogy because the 2012 Olympics in London was such a moment of national solidarity and pride and energy. Yeah, it was brilliant.
00:53:22
Speaker
Yeah, but you had to have had the boldness to have imagined and believed in that possibility decades before. That's what we're doing at SENS. We believe that it is possible to remove the barriers that disable us and disable the people even with the most complex needs. We truly believe in that.
00:53:40
Speaker
I don't expect to deliver that necessarily in my tenure as chief exec and that's absolutely fine. We will make progress. We will make progress. And if my success has achieved that, fantastic. I look forward to them doing that.
00:53:53
Speaker
But we must make progress towards it. And I think that's what we're all doing all the time. I see you do that in your career too. And that's why we all admire you because you can we can see you're doing it if you're.
00:54:05
Speaker
So let's all keep building that cathedral together, James, even though you know we may not be around to see the finished product. James Watson O'Neill, thank you so much for this provocative and wonderfully insightful conversation. It's been a real pleasure to have you on the Charity CEO podcast.
00:54:22
Speaker
Thank you.
00:54:25
Speaker
As a closing reflection, i would like to add a really heartfelt thank you to James for his candor, provocations, and activism. My own activism comes in part in the form of this podcast.
00:54:37
Speaker
I am proud to be able to spotlight incredible organizations and people across our wonderful sector and to continue to amplify these important conversations through the Charity CEO podcast. Please continue to like, subscribe, and share.
00:54:51
Speaker
Thank you for listening.