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So Who Cares Anyway E51 Creating Supportive Communities · SoWhoCaresAnyway

• 0:04
  Welcome to So Who Cares Anyway?, a fortnightly podcast exploring stories that shape care, community, and the systems we live in.
• 0:12
  I'm Ruth Germaine, and in each episode I'm joined by my guests, people from behind clinical doors to the North York Moors, whose experiences open a window into how we care for one another.
• 0:24
  Together, we explore care through creativity, connection, and the strengths we already hold.
• 0:31
  Because care isn't small.
• Care isn't soft.
• 0:34
  Care shapes the world.
• 0:36
  So who cares anyway? It's time to talk about it.
• 0:42
  Hi, and welcome to the next episode of So Who Cares Anyway? And today I'm talking to Juliana who's a fellow Rotarian and whose work spans both the UK and Africa.
• 0:52
  But actually what we talk about is disability, neurodiversity, and in particular about communities and the way that society can either support people or further disable them.
• Juliana and I weren't really too sure where this conversation was gonna go, but we knew from our previous conversations that we had lots to talk about.
• 1:12
  So I hope you find it interesting, and I'll leave you to take a listen Hi, and welcome to So Who Cares Anyway? Today, I have Juliana Amae with me.
• 1:23
  It's really nice to have you join me.
• 1:25
  Hi, Ru.
• 1:26
  Absolute pleasure to be here today.
• Thank you.
• And, um, I say that we're, you're a fellow Rotarian.
• We're both direct members, so actually we just met through a WhatsApp group that there is.
• 1:37
  There's a number of WhatsApp groups now for the direct membership, and you put out about some work that you were doing for your community interest company, which is Disability Equals Ability, and I helped you help support some of those co-creation workshops.
• 1:51
  So yeah, so that's how we met in the initial instance, and then after that we had a...
• we met to have some conversations, and the conversations went on, and I said, "I think we need these conversations on a podcast," so that's why we're here today.
• Yeah, no, absolutely.
• Um, I was just...
• Ru, it's a charity.
• Oh, I beg your pardon.
• 2:08
  When I say things wrong, just correct me.
• Oh, okay.
• Okay.
• Okay.
• Okay.
• 2:14
  Yes, absolutely.
• 2:15
  We, we did meet on an amazing...
• 2:17
  As, as you know, these days everything is sort of on WhatsApp.
• Um, and Rotary has sort of that, their, that WhatsApp group for direct membership, really amazing platform to be able to sort of connect.
• And yeah, you, you supported us with, with some work, work for our focus group and a project we were working on at that time, which was really amazing, and thank you again.
• Oh, no problem.
• No problem.
• 2:39
  Um, it was a pleasure actually, and I always enjoy doing workshops with people, so I really enjoyed doing the work.
• Um, but I just wanna go back a little bit, Juliana, and just ask you about, you obviously you have, um, this charity, Ju- uh, Disability Equals Ability, which I think is your brainchild.
• Is that right? Is it that you set up? Yes.
• So I, I sort of founded Disability Equals Ability.
• I'm, I'm currently a chair at the moment as well, really focused on empowering individuals with disability, thinking all things equality and inclusion as well, essentially just exploring how we can create opportunities for individuals with, with, with a disability.
• I think in terms of my background, um, I'm a social worker, really passionate about all things disability.
• I've worked within sort of social care for a number of years as well, and sort of understood sort of the impact that- Sort of society contributes to the lives of people with disability and how sort of those challenges are still persisting.
• 3:47
  Um, even from my lived experience, um, navigating being sort of neurodiverse, m- my disability as well, it really sort of stemmed sort of that desire to, to want to make an interest.
• 4:01
  Um, a, a, a lot of work has really gone into sort of thinking about as a, as an individual from sort of a, a diverse background as well, thinking about sort of the intersectionality around disability and how can we work with people with disability to really shape their lived experience in a positive way.
• But yes, that, that, that's essentially it really.
• Um- Okay my, I think overall my experience as well when I think about it was sort of- My background being sort of a, a, a migrant as well, coming into the UK, I'm still sort of really connected to my African roots.
• 4:40
  Um, although I came here at a really young age.
• 4:43
  Um, but thinking when I sort of travel to, to, to, to my country as well, and I think of sort of how disability's seen there, and although sort of in the UK there, there is sort of that still, there is those inequality and those disparities, but while things are changing in Africa, i- it's, there's still a lot of work that is needed for individuals with disability to, to see those sort of positive outcomes in their lives as well.
• So BA, we are a charity of essentially, I say, two halves, really focusing on sort of the work here in the UK, and also really, um, wanting to contribute to, to the lives of people with, with disability in Africa as well.
• 5:28
  Thank you, Juliana.
• 5:29
  And it's really interesting hearing about how you're doing the work in two places, and I don't think I actually even had taken that on before, so that, that's really interesting.
• But I'm just gonna come back, 'cause you have mentioned, you know, about your own navigation about being neurodiverse, the fact that you moved when you were quite a young child, and I, and you've gone into, gone on to become a social worker.
• So there's quite a bit that you've said there, but for people listening and, and for me as well, we don't really n- know you, so I'm wondering w- what was it that happened, or was there a point that drove you to think, "This is what I need to do"? Um, and that might be your own story, that's something that happened to you, if you're happy to share that, or something that perhaps you saw that was happening for somebody else, um, either in the UK or in Africa, or maybe there's a little bit of both, I don't know.
• Yeah, no, absolutely.
• It, it, it very much, um, a bit of both if, if, if I should say.
• Um, growing up here in the UK, um, be- being an individual who w- was neurodiverse, n- navigating sort of education, um, to secondary school, going on to college and then university, sort of the challenges I felt and always sort of accessibility was not what it is now.
• There's still, as I always say, there's still work to do, but it, it, it wasn't what it was now.
• 6:52
  There weren't as many voices, even when you think of the neurodiverse space, when you think of, um, there's a lot more conversation around sort of autism, dyslexia, a lot more awareness.
• There, there's that idea of, oh, uh, neurodiversity as a superpower now.
• But it, it wasn't always the case, and I think for me, seeing that, we, I wanted to contribute to, to, to that, to, and sort of shaping the lives of individuals living with sort of different neurodiversity, equally living with, with a disability as well.
• 7:27
  I live with a condition that really impacts sort of my fatigue level on a day-to-day basis, and sort of navigating sort of the workplace can be really difficult.
• 7:39
  And when I think of sort of other individuals who are having to go through sort of those challenges, be navigating the emotional element of that, I feel that actually, I, even if it's one person's life that we're able to touch, that, that's really important to, to, to me because navigating that as a sort of a, a, a, an individual for, from a mino- minority background, I didn't feel that that support was necessarily, um, as available as it could have been, and equally sort of the work we're doing i- in, in Africa.
• 8:12
  When I think of, sort of when I visited sort of previously, just seeing the level of, um, inequality, um, the lives that individuals with disability were sort of hidden, sort of physical impairment is very much hidden, um, and the ch- children with disabilities were not always privileged to be able to access education as much as sort of we, um...
• Although that is changing, that narrative is changing.
• You're seeing a lot more individuals with disability accessing education.
• So for, for Disability Equals Ability, we, we wanted to contribute to that sort of positive change that, that is happening, and that's where sort of just that v- variety of experience really birthed and sort of where, where sort of DEA, uh, Disability Equals Ability, really sort of, um, emerged from.
• And lucky enough, I've been able to have some really positive individuals sort of, um, within the board level and also, um, volunteers who, who have really supported, worked together to be able to sort of...
• We're very much still a small charity, but very much agile and, and, and sort of develop.
• 9:20
  Thank you.
• 9:21
  Yeah, that's...
• 9:22
  You, you've spoken yourself about having your own disability and it causing fatigue and that difficulty in navigating the workplace and not having that support always there, which I wonder if that's something about as well why you went off to work for yourself, um, and set up the charity because that way you, you essentially remove some of that, um, complexity, if you like.
• Yeah, no, interestingly, I, I still very much, I still very much work, um, within the disability space, within the local authority as well, but I'm able to shape things differently.
• I'm able to contribute my voice as well, um, to sort of the experiences that other people are having, thinking about sort of the positive elements of how change can happen in a positive way.
• Okay.
• Thank you.
• So I wonder as well, before we move on, and I'm gonna ask you in a minute a little bit more about what you're actually, what you're doing.
• You've described some of the things in sort of in the in the UK and some of the things that you've felt here, but you've also described some of the things in Africa about how people aren't able to access education.
• 10:31
  I wonder if you could just give us a little bit more of a picture of, of the differences.
• 10:35
  So for you, what barriers and enablers do you come across in the UK? And then perhaps thinking about people, uh, w- for you or for others, but sort of perhaps giving that a little bit more explicitly.
• And then for those people then that are living in Africa, in what you've called your country, what is the difference there? Um, because there might be some things that are actually more positive there that we can learn from as well, which I'm always really intrigued by.
• So yeah, that's what I've...
• You know, if you can give the UK bit first and then the Africa, and then we can perhaps sort of think about that in a bit more depth.
• 11:08
  I, I think sort of wearing the lens of sort of being a social worker, sort of thinking about social justice being really important, sort of that service level and sort of that commitment to equality and advocacy, right? The, the, that's sort of the starting point.
• 11:25
  And when you think of sort of where sort of things are here in the UK in terms of that social services, that really sort of the first sort of gate point for individuals with disabilities, um, there are challenges here in terms of sort of budgets, um, funding, sort of the increase in numbers of individuals who need those services.
• 11:47
  But equally, they, they are positive in terms of the level of awareness.
• 11:52
  I think when you think of sort of the amount of social media that sort of promotes disability and inclusion, um, the-- it's sort of that message is sort of given at schools, the idea of equality, being able to accept individuals as they are.
• 12:11
  All th-those are all sort of really positive, um, things that, that we see here.
• But equally, there's, as I said, that, that sort of challenge is around sort of budgets, um, for individuals with disability.
• 12:23
  Yes, they, they are able to access a lot more services, um, but equally, there are budget constraints, um, that are now impacting, um, individuals with disabilities here in the UK because of the level of austerity.
• 12:37
  So I think when I think of sort of where the differences are in terms of Africa, I think that, that level of equality, uh, there's still a lot of work that needs to be done.
• For example, um, the, the level of consideration that goes into maybe building a school.
• Is there a ramp, for example? Um, that, that always isn't the case.
• Is-- uh, in building sort of essential m-ministry, ministry offices.
• For example, here you can easily access your local authority office.
• You-- most likely there'll be a ramp.
• Um, if there isn't, there's quite a clear channel that you can sort of make a complaint.
• 13:19
  But it isn't always the case in, for example, I'll give Nigeria for example.
• Um, that, that isn't always the case.
• Um, individuals are not able-- not to generalize all African countries, because there is a lot of work being done and a lot of positive.
• So I'll give N-Nigeria as an example.
• When we think of sort of accessing some of the ministerial office, like going to see any of the governmental office, it's, it's, it can be really challenging because some of those a- offices are not accessible for individuals with disabilities.
• Maybe the universities.
• 13:53
  Here, you're most li-- in the UK, when you think of ramps, agai- again, for example, most universities have a ramp, a lift that you can access quite easily.
• 14:02
  Um, but for example, in Nigeria again, some, some students have really struggled being able to access sort of university lecture rooms because that thought process hasn't gone into, should we have the, the classroom downstairs just to ensure that everyone-- it is accessible for everyone? But equally, there's a, there's a lot of positives.
• When you think of Africa, uh, the family bears a lot of burden.
• 14:29
  The family are able to sort of care for, for the individuals with disability, support them, um, over a longer period o- o- of time, um, as they age a- as well.
• So tho- those are some of the differences.
• 14:43
  And I think equally W- here in the UK, there is a lot of pathways for individuals with disability to be able to be entrepreneurials, create their own businesses, um, finance projects that, that can generate that, those income stream.
• And this, uh, sort of looking into that, that, that's really f- um, gone on to sort of a project that we're currently developing, uh, with Disability Equals Ability.
• At the moment, I won't touch into it...
• 15:11
  ch- ch- talk into it too much.
• Um, but creating livelihood streams for individuals with disability, that, that's a really huge gap, um, and that's a massive difference between sort of the UK and Africa, particularly Nigeria, because a lot of individuals with disability are not able to create sort of income pathways for themselves.
• Um, and as a result, they're fur- further disabled because of, sort of the, the environment, because they're not able to access sort of streams of the income to support them.
• Not only are they disabled by the environment and the society, but then they're further not able to access services as well to be able to create, um, income streams, to be able to then better and live a better quality of life.
• Thank you, Juliana.
• 15:54
  And you've said a huge amount there.
• So I am gonna just try and recap it a little bit, and then I've got a couple of bits that I really want to hone in on that were really interesting.
• So you've talked a bit about that budgets and funding in the UK.
• We've had austerity.
• That's really made a difference, and I just want to reflect on that straightaway and say, yeah, and I wonder if that's where things like the type of work you're doing, where you're doing co-creation work and workshops to actually find out what people need.
• I think that's really important.
• So that's that asset-based community development.
• Because actually, there's so much more than just budgets and funding that we can use and tap into, and that's something that, um, Cormac Russell talked about in his podcast and talks about quite regularly.
• And also, that the Rotarians have, uh, Rotary has really, especially the Rotary director, has really taken on board with the, uh, work we do there.
• 16:45
  Um, but you spoke about how there's so much more awareness and it's more positive, and you start to talk about things like ramps.
• So there's ramps here in the UK, and it's a really broad example, a really good example, actually, because you're saying in Africa there isn't that.
• And But what there is, is there's more family support.
• 17:04
  But there isn't that bit where you can go along to the authorities, whoever they might be, or the bureaucracy, and there isn't that agency to say, "Hang on, I need a ramp."
• 17:14
  And I wonder if that's, um And the fact that you chose ramp and spoke about that, I think that shows that perhaps that does give a bit of an insight into the fact that if we're talking about something that's what you might call an overt, an obvious disability, such as needing a ramp, then go into those other, um, reasonable adjustments around neurodiversity perhaps aren't even thought about yet.
• 17:39
  Um, and as you say, if we go back to, and you I don't know your age, Juliana, but you're obviously a lot younger than me.
• But you- you're already saying yourself, going back to your childhood, people weren't talking about those reasonable adjustments.
• That's something that's quite new and has changed, and certainly I've seen that in, in people that I know, um, and in their lives, the difference that there is now and what there was going back in, back earlier on.
• So I think that's something that's evolving quite rapidly here, but there's still a long way to go.
• But actually it shows that perhaps there's that lack of, um, you know, awareness that's happening.
• And I think we should be really proud of the, of the differences that we're making now and, and the fact that we've got so much awareness.
• But there was a couple of things that you spoke about, and one was about creating livelihood streams and how that was easier in the UK perhaps than in Africa I think I got that right.
• 18:34
  Would that be right? Yeah.
• 18:35
  No, absolutely.
• 18:36
  I think in terms of opportunities, sort of that capital opportunities, maybe access to financing or grants, for example.
• 18:45
  I think even as, as basic as, as a grant to be able to maybe create a startup, create your own CIC, those are opportunities that, uh, are more accessible.
• 18:56
  As I always say, I, when I speak of A- Africa, it's such a big continent and, and I don't like to generalize, but I'll always go to particularly Nigeria, which is where I'm, where I'm from and my heritage.
• 19:08
  Um, that, that opportunity isn't there, so there's a lot of work that sort of the governmental institutions need to do instead, and sort of charitable organization as well, um, that n- that needs to be done just to support individuals.
• If it's, for example, maybe you love sewing, how can you be supported to sort of make, go make your, your sort of sewing passion, taking that, allowing that to become a business, for example, and creating a space that actually works for you? If it's sort of maybe becoming a consultant, doing training around disability, how are you supported, um, for that to be sustainable? I, I always say i- it's, it's quite interesting, the saying of, um, being able to, to, to teach people how to fish.
• I think that that's really, really important because when a, a charity isn't there or the governmental institutions are not there, but those individuals are able to sustain themselves over a longer period of time.
• And when they're sustaining themselves, it's not just themselves, but they're able to sustain their families, children, for example, because in Africa, sort of that per- that, um, community i- is, is so important And that, I think that's really interesting because it, what I'm thinking about there is the fact that you're talking about in the UK there's more opportunity.
• But actually, perhaps it's because you've got that dual lens, because I think that a lot of people would say, "It's really hard here, really difficult here," and it is.
• 20:43
  It is.
• Absolutely.
• It isn't actually easy, but actually if we compare it to what you're seeing, and so you have a comparison, then we can realize exactly how far we have come.
• 20:53
  Absolutely.
• 20:54
  I think it's that comparison, isn't it? Of acknowledging that actually, yes, indeed, 'cause we, we hear of sort of, um, cuts that are intended.
• 21:03
  We've seen what happened recently with sort of, um, the mobility cars and sort of different political, um, political parties discussing what they would like to do to sort of the welfare system.
• So that, that is there.
• There's a lot of challenges for, for individuals navigating their lives e- on a day-to-day basis, living with a disability in the UK, be it in the workspace, be it sort of financing.
• Um, but where I am able to see that difference, I, I can actually say, yes, UK, they, we have a lot of work to do, but equally, there are other people who are sort of in a worse predicament, um, who don't have those sort of systems in place in any shape or form really.
• Yeah, and that's really interesting.
• Um, but what's interesting at the same time, and I was thinking about this, so my, my brother runs a charity called We'd Rather Ball in, um, Kenya.
• And we went out to visit and saw some of the work that he's doing as well as going on the safari and all of those things, which was wonderful the other year.
• But I came back and said to him, "Well, one of the things that I noticed is that the children don't really have toys, and there isn't play.
• And when I went to the classrooms, they were bland.
• There weren't pictures on the walls," 'cause we went to the schools.
• And he said, "Yeah, but, but Ruth, what we've got to be careful of," 'cause I was saying we, and I had all these sort of ideas I started coming up with.
• He said, "Is that they've got things and richnesses that we don't have."
• And this was before I really, so it was a couple, a few years ago now, r- before I really started thinking about the ABCD and the things that Cormac Russell talks about, and that sort of do with approach of, you know, a community is coming on.
• And he spoke about how there were families and how those families and those communities still supported everybody.
• 22:54
  Whereas, where we have such large institutions like the NHS and social care, what's happened is we've started, a- and even our police force, which some people might say there aren't enough police or whatever, you know.
• 23:06
  We, we hear that all the time and s- in some ways there's, they're very justified comments, but at the same time, our communities have stepped back, or we in our communities have stepped back, and we are, "Oh, but-" The polices aren't doing this, the schools aren't doing that.
• 23:23
  The NHS should be providing this, and so our communities have withdrawn.
• 23:28
  So there's something I think about how we, we get that back, that sense of community, and how, um, when we're supporting perhaps other countries such as, you know, um, I think you said Ni- Nigeria and Kenya, and perhaps, uh, my brother was talking about in Kenya, then maybe we need to sort of think about h- how...
• 23:48
  Or it's really important to think about, well, how do we not lose the assets that they have and the knowledge that they have when we start to do, help to support them and help them to develop? Yeah, no, absolutely.
• It's such an important point.
• 24:03
  I think when I, when I think of sort of, uh, uh, using Nigeria as an example, and, uh, probably equally Kenya as well, communities are such an integral part there.
• Um, I think where sort of the institutions have not been able to, um, where, where we in the UK have sort of the...
• Our institutions are really working or to, to an extent work, if I should say.
• Mm.
• Our institutions work.
• That system does work to an extent.
• A lot of, a lot of, um, countries in sort of the African nations, their institutions are not as functional, so the community has had to sort of play that role.
• And I think when you are developing projects, you, you, you...
• As Comma Across the World, you make those communities a part of what you're developing.
• 24:51
  Um, equally, we would love to see sort of in the UK more of that community sort of spirit.
• I think we saw that so much during COVID.
• A lot of communities came together, helping sort of your neighbors, g- doing shopping for, for, for maybe your neighbor who you knew maybe was not able to sort of access the shop.
• People took those, took on those role quite easily because at that point, no one else could do it, and I think that's what we see in Africa because it's...
• No one else is able to sort of, to, to take on those roles.
• So a lot of c- that community then steps in to be, to, to be able to do that.
• I think what we saw with COVID here in the UK, once...
• I, I think to a, to a small extent it might still be happening, but once sort of all the restrictions were lifted, everything basically went back to business as usual.
• So that community spirit sort of, it, it, it emerged during COVID, but I think it has started to dwindle.
• Yes.
• Yeah, I think you're right, and I think it's dwindled at a time when actually COVID put everything under so much strain, and financially, the country obviously had spent so much that there was a massive change in the fact that we probably need more community spirit now.
• 26:09
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• 26:19
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• 26:25
  Now, back to the conversation So before we moved on, 'cause I felt like I was g- I could move on from that point that you just said into what you're doing, um, and that would have fitted nicely.
• 26:36
  I just wanted to talk about, a little bit about that, 'cause I've not sort of heard anybody use that expression before, if you like, being further disabled.
• 26:43
  I think what we...
• 'Cause I, I love the social model of disability.
• I think it, it's such an important way of thinking about how society can further disable someone, or our environment can further disable someone.
• So when I think of, for example, I'll go back to the idea of that ramp.
• Let's, let's, let's, let's use that ramp as an example.
• So I have a, um, for...
• 27:10
  Okay, I'll, I'll give the most sort of visual example I can think of at this point, which is, uh, being on the wheelchair.
• 27:17
  Yes.
• Right? Being on the wheelchair, and I need to get up to sort of my local authority's office, so the local council's office, but there's no ramp, and it's just those stairs there.
• What does that do for that individual internally? Mentally, you're being, you're feeling that, oh, am I at a, am I at a worse predicament than everyone else? Because if you re- wanted to go up those stairs, you could easily go up those stairs.
• 27:47
  It then makes you feel that, actually, if there's no lift, how am I gonna...
• 27:51
  If there's no lift, no ramp, or no access at all, I can't access that building.
• So that barrier is there.
• You further disabled that person than they probably they felt maybe leaving their home, where everything was at a lo- at a level that they could access, and they didn't feel as disabled when they were in their home because everything was adapted to them.
• It worked well for them.
• But when you, when you put that, uh, that ramp there, you've removed that barrier for that person.
• You've removed that wall.
• 28:24
  They can access that space.
• They m- They w- It then, yes, that disability exists for that individual because it's their experience, but they're able to access a space differently in a more positive way.
• Equally, when you, when, when we think of what is happening now with sort of AI, I know a lot of people have sort of different feelings around the use of AI.
• Individuals with dyslexia, for example, AI has made a lot of positive impact for individuals with dyslexia.
• You can dictate now.
• You can have sort of spell check.
• Yes, you're, you're, you're neurodiverse.
• 29:08
  You've got this difference, but you're having to experience it in a, in a more positive way.
• It doesn't mean it's automatically disappeared, but you're not fee- you're not left feeling less able than your counterpart So I think that, that's, that's really, really important when we think of how society's created those services that we interact with in our day-to-day life.
• 29:33
  How they, if, if not available, they can further disable someone.
• 29:38
  But if it's, if it's opened up in a positive way, if, um, if those policies are there to acknowledge that these services are needed and people are able to access it, then individuals are not left feeling further disabled, um, than d- than they are.
• 29:57
  Yeah.
• Thank you.
• 29:59
  And you touched on a really important point in there, Juliana, right at the beginning of it when you said, "How do they feel internally?" And you started to talk about that, that mental health bit or that, you know, how people cope with the fact that they aren't doing that.
• So it isn't just the fact that they can't get into the building, it is the fact that they've lost their agency and mentally that impacts them in how they can then perform in society.
• Absolutely.
• And I think w- what then happens that a lot of people don't acknowledge is, okay, um, your, your mental health is really low, but those coping mechanisms, those resources for you to actually be able to get back to a really positive mental health state, it's not as accessible as it could be.
• If you went to your GP, the likelihood of getting a counseling service by, in terms of referrals, you're looking at a number of months.
• You're most likely, maybe the first option, which is the quickest for GPs is, is medication.
• So it, it's, I think what needs to be thought of is sort of that prevention rather than firefighting.
• 'Cause you'll firefight...
• A lot of what happens now is there's a lot of resources going into firefighting, firefighting rather than sort of the prevention.
• So when I think of firefighting, it's okay, this person is really, is experiencing sort of decline in their mental health.
• Oh, we need to find resources.
• 31:23
  But those resources are not available because there's a million other people that need the resources that are classed as more urgent than you.
• And as we can see w- w- with the trend in society, things are...
• There are a lot more people n- that need access to- To resources, to services, but the budgets are not matching to be able to, to, to sort of provide those services.
• 31:52
  That's why I always revert back to a lot more taught needs to go into prevention.
• Prevention, prevention, p- how can we prevent? How can we create a better commu- how can we create more in, more s- communities that could support individuals? How can we have those resources before that individual is then having to experience a massive decline in their mental health? Uh, but yeah, I, I, I've gone on a, gone off on a bit of a tangent there.
• It's a b- uh, it's a topic that's really passionate, um, to my, to myself.
• I can see that.
• I can see that in your face.
• I'm sure that listeners can hear it, but I can see it in your face.
• But actually, you haven't gone off on a tangent, because what you've just said is, how can we create communities that su- c- that can support individuals? And that goes back to, and I've got to draw a little diagram here where I've got the institutions on one side of the UK, the communities in Africa.
• 32:45
  Yeah.
• 32:46
  And I'm sure they, and that, you know, I don't want to take away the fact that there's some really strong communities i- in the UK, but actually there's something about that middle ground, and what you're talking about is that middle ground.
• So I'm gonna move you on now, 'cause, um, we've, we've talked a lot here, and I think we could probably go on, but l- tell me a bit about what you're doing through d- or what Disability Equals Ab- Dis- um, Ability is doing, and some of the work, 'cause I know there's so much.
• 33:12
  And when you tell me about that, you know, you can talk about one or two projects and the impact they have, but go back to that bit about the, the workshopping and, and why, why you've done it in the way that you've done, because I, I saw that first hand, um, and it was really good to see, so.
• 33:28
  Yeah, I, I think absolutely.
• We, we've, we've recognized, um, sort of the, the, the challenges, um, in terms of services, for example, and we, we wanted to co-produce with other individuals living with sort of different disability, be physical, be hidden disability as well, um, to be able to, to fully think of- How th- this is the, it's, it long term, I think it's that long term, um, services that are, that are needed, and as a small charity, what could we do with our little sort of, our, our little sort of, um, capacity that we had, but in fullness, what could we actually do? And I think we then sort of co- we wanted to, to create a workshop, and we did sort of the focus group to really understand where, where are those areas that pe- individuals felt that, "Oh, I would like more information," or, "I would need more support."
• 34:24
  And that then led to what is now being funded by the National Lottery, um, to, um, where we, we've developed a, a series of workshops, um, looking at sort of emotional wellbeing, uh, using music, um, to promote better wellbeing, looking at communication, and th- th- those have been sort of really important.
• We've also got sort of a workshop coming up as well around sort of nutrition and how that impacts on, um, our overall wellbeing, and When we think of society and services, those services are not always available.
• 35:03
  That information might not be always available on, uh, at hand, and where people are not able to access the workshop, we- we're going to have these resources on our website as well.
• 35:13
  We're developing some resources that would then go onto our website.
• 35:16
  If maybe professionals wanted to sort of visit the website, have a, have a look at, uh, those resources for maybe individuals that they're supporting, w- that would be there over a long, longer term.
• 35:29
  So maybe once our workshop have ended, for example, those resources are still there for, for people to be able to access.
• But yeah.
• And what you spoke about with that workshop and at the beginning, those focus groups, is that actually we really managed to draw out from people what it was that they needed, and I think that's the difference, isn't it, with institutions and what I call that do with approach.
• What actually works for you? What will support you? Um, whereas a, as an institution, quite often, even if the individual's working within them, will ask the individual the support mechanisms that are around them and the constraints of working within what are often quite clunky systems are that you can only offer certain things.
• 36:11
  Yes.
• Whereas when you have something small like yourself, and I would say that by being a charity you're almost a community in yourself, you're, you're, you're developing- Absolutely a smaller community, is that you're able to go to people and say, "What do you need, and how will it work for you?" And you've spoken about a few things there, um, s- about music workshops and things.
• So I'm just wondering if you can give me a little bit of a...
• So, so for people listening and for me, because obviously I was part of those focus groups, but a picture perhaps with, without giving any names, but as of an individual or a group of people who have perhaps accessed some of those workshops, whether it's the music one or not.
• I always like things like music and arts, sounds interesting, but any of them are fine.
• 36:53
  Um, and how has that...
• What difference has it made to those groups of people that have joined them? Um, what are people telling you? Or d- or have you gotten little stories that you can share with us? Yeah.
• I'll, I'll share one from a session in, in Salisbury that we delivered, um, around emotional wellbeing, um, and mental health strains.
• I, I remember this particular individual.
• Um, it, it, it was quite profound to me 'cause, um, as, um, listening to him share how he is currently receiving support for his mental health.
• He has a psychologist, um, involved already in terms of supporting him.
• But how he felt that being part of a s- a small group of other individuals and being able to share his experiences and having those sort of, um, resources and knowing that I'm not alone, and I think that word really sort of- It, it really took, it, it, it really stood out for me because sometimes you're ex- you're going to sort of maybe your counseling service, your, your counseling sessions, or your, your session with your psychiatrist, but not truly feeling that sense of, oh, there are others experiencing what I'm experiencing.
• And he, he, he left that session saying, "Oh, it, it was really positive to know that I'm not alone, that there are other people feeling sort of how I'm feeling."
• And I think that's something we, we take for granted, and it was such a r- it was a massive eye-opener.
• This is someone who, who can equally, um, was able to go on and sort of continue his day, but he was able to identify with, with a group of other people.
• And I think being able to bring people together is really important.
• 38:51
  Um, sometimes you, you might be experiencing-- And he said to us, "Oh, I wasn't sure if I was going to attend this morning, but I, I dragged myself out," and he's left feeling that I'm not alone.
• There are other people experiencing sort of something similar to what I am.
• 39:10
  And, and I think that's, that's something I, I think as a society here in the UK, there are a lot of people who feel very isolated, a lot more than, than is reported.
• And when we think of community building That is a, I think that is a direction that as a society, each and every one of us should make a conscious effort to think about how is my, is my neighbor okay? Have I seen my neighbor in the last three days? Yeah, such an important thing.
• And, and a really impactful story, especially if you sort of, with what you were saying, because you were saying he felt that I'm not alone, and you spoke about how he said he felt there's other people that feel like I feel.
• So it wasn't just are people suffering the same physical or mental disability, whatever it is, or, um, neurodiversity, something like that.
• It wasn't just identifying.
• 40:11
  It was the feeling that other people feel this way.
• And then you went on to say about how he dragged himself out, and I think that's really important actually, because he dragged himself along.
• And the reason why he dragged himself along, I wonder, is because he thought, "Well, what's in this for me? What's the point of me going along?" Because he felt so, and, and I'm assuming here, but he felt so isolated and so alone, um, and potentially so lonely- Yeah that he didn't actually believe that by going along to something would make a difference, and would, would help him and support him.
• And that, as you say, suggests a fundamental break in a society when people are thinking, "I'm alone in this.
• I'm the only one, and there's no point me even going along to meet anybody else."
• I, I think it, it's that fundamental element that you've just touched on right there, Roo, is- It, it's what am I benefiting from? A lot of people don't feel that when they attend sessions, whatever that session is, they're able to connect with other people.
• 41:22
  But as I said, it goes back to that sort of fundamental element of society.
• 41:26
  A lot of people just want to be alone rather than sort of coming together and, and connecting again.
• I think there needs to be like a, you, you, when I, when I look at the, um, sort of younger kids that I have, they love playing together, they love sort of being outside.
• Um, you go on to sort of the secondary school, it's equally the same, but I think when you then start looking at sort of university, the later sort of secondary school age, year 11, year 12, college, it sort of starts fading off slightly.
• Yeah.
• 41:59
  That desire to connect i- i- is being lost.
• 42:02
  And I, I always say we underestimate the impact of technology and how the, the more, I, I think sometimes the more, so this probably is a argument that might not stand, but I think the more advanced societies become, it appears that the s- the, the connection sort of start to fade.
• Yeah.
• And so the more advanced society thinks it is, maybe the less advanced it actually is, because actually that, that connection and that human connection is so important.
• For some reason I've just got in, in my head, you know, you, you often see these plaques, and I can't remember the exact words, but they imply, you know, "I prefer dogs than people," or- Yeah you know, "I'd rather be with my dog," those types of things, or my cat.
• And I think, you know, I've probably, I've probably said it myself at times because it's sometimes so complex, isn't it, going out to meet people, it feels complex.
• It is.
• And it's about that going into work and people not quite understanding you and having to struggle there.
• What, what I will say when I sort of think of sort of a lot of, a lot of the African communities, their religion draws a lot of people together in terms of that community, be it Christian, Muslim, and I think when we think of the UK, sort of historically in England or in Ireland, sort of religion had a, a massive part to play, and that was a channel of bringing people together.
• Even things like social work, tho- those all emerge from sort of- religion.
• 43:35
  Um, but as that has dwindled, also sort of that link in society is al- also sort of dwindling as well.
• Yeah, that's, that's really interesting.
• 43:45
  And actually, a lot of the, um...
• 43:47
  If you look at the, uh...
• 43:48
  So I, I recorded a podcast.
• 43:50
  Unfortunately, it couldn't go out because it, it didn't record properly.
• Um, and the people that came on it haven't been able to come back again.
• But they were talking about the fact that, um, Call the Midwife was based on, actually they, it was a religion.
• 44:02
  It was- Yeah it was the nuns, and it was those people that were there, and they didn't just go and deliver babies.
• They were actually there for society and community, and they knew their families, and they knew the complexities and what was going on, and they were there to support them.
• 44:17
  And in actual fact, out in Brazil, um, they've started to build a model that's based on Call the Midwife.
• Oof.
• Wow.
• 44:24
  Um, and now it's coming back to the UK, and, and they're starting to use that model in the UK in some of the general practices.
• So would've been a great podcast if it, if it happened- and I'm sure it will at some point.
• Mm-hmm.
• So interesting.
• But that's what you're talking about, and I think it is that thing that as we help to support other countries develop, we must remember their assets and everything they have.
• And as we continue to develop with AI, which as you say- Yes you know, people might like it or hate it but, and have their own opinions about it, but that might support people.
• But at the same time, it could also disconnect us.
• Yes.
• Absolutely.
• So we have to be really conscious that, um, as we evolve our societies, connection is a really important thing.
• And so often people sort of think the word network is something, or networking is fluffy, but it's not.
• It's just about talking to people.
• Going out and talking to people.
• And, and I, I understand sort of the barriers that people f- think that they are if you're not a natural speaker.
• I'm, I've, I'm not n- the, the most natural speaker or navigating sort of that networking space, but it's seeing, so acknowledging the importance of it.
• 45:34
  When you acknowledge the importance of it, then you're, you're most likely, you will most likely want to make that effort to, to go out and connect to other people.
• Thank you, Juliana.
• I'm really aware of time.
• We've been recording for a while now, and I think we've had some fascinating conversations.
• I'm sure we could have delved into many of them a lot deeper.
• No, no, it's, it's been- But, um- Yeah.
• Yeah.
• It's been really lovely, Ruth, speaking to you today.
• Yeah, exactly.
• Um, likewise.
• I've really enjoyed it.
• And we've gone places 'cause we both said at the beginning we're not quite sure.
• Let's just see where the conversation goes, and I think we have gone places we didn't expect to.
• But I'm just gonna ask you before we end, what, what's your message or what's your call to action? You might have one or the other or both, but, but what do you want to say to people out there that are listening today? I think- Being able to think about the other person around you, not being fearful of saying hello, welcoming and acknowledging the differences in others.
• 46:32
  Like, yeah.
• 46:32
  That's a really lovely way to end.
• 46:36
  Thank you I hope today's conversation gave you something to think about.
• 46:42
  If it did, please share it with someone.
• 46:44
  Ripples matter.
• 46:46
  You can also follow the show so you don't miss future episodes.
• And if you have reflections or ideas, then please leave a rating.
• Or to support my work, head over to my Linktree, which you can find in the show notes.
• 46:58
  But for now, stay caring, stay connected, stay curious.
• Thanks for listening.
• So thank you for listening to that episode.
• 47:08
  You've obviously stayed to the end, and I think Juliana left us a great message there.
• 47:13
  So I don't think there's much more for me to expand upon.
• 47:16
  I am thinking maybe Juliana might have expanded upon it a bit more, and I cut in with excitement a little bit quickly.
• But yeah, that bit about saying hello to people, just being welcoming and not being fearful of doing that.
• I think sometimes we, we all hold back in different situations.
• 47:33
  But actually, it's fine to just reach out and connect to people, and that will make a real difference.
• So thank you for listening, and until next time