Disability Pride, Community and the Disability Movement

Esi is joined by Berni Vincent, a disabled activist, artist, and long-standing figure in the disability movement.

Berni shares her journey from growing up excluded and isolated, to becoming proud to be a disabled person through connection, community, and collective action. Along the way, she reflects on how meeting other disabled people shifted her thinking and sense of identity, something that also influenced Esi’s own approach to disability.

The conversation explores what inclusion really looks like in practice, the difference between meaningful support and token gestures, and why co-production still matters. There is also a clear thread around what has changed, and what has been lost, as spaces for disabled people have become more fragmented and more digital.

Berni also shares how her experiences have shaped her art today and how creativity has become another way to express identity, politics, and lived experience.

Signposting and resources

Berni Vincent’s art 

https://outsidein.org.uk/galleries/berni-vincent/

Outside In
A platform supporting artists who experience barriers to the mainstream art world.
https://outsidein.org.uk/

Under Marc’s leadership, Outside In has become a trailblazer in the art world, supporting thousands of artists who face barriers due to health, disability, social circumstance, or isolation. With over 4,000 artists showcased on its digital platform, more than 80 exhibitions (physical and online) and a growing number of outsider and non-traditional artists represented in the charity’s own Collection, Outside In has become a leading voice for artists outside the mainstream.

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Transcript

Why inclusion is not only about money

SPEAKER_01 0:00

So I think if companies could look at what resources they have and really examine those resources in the context of inclusion, it doesn't have to be about money, you know. But but but if you have got a little bit of money, then look at what you can do with that money to make a difference and co-produce that.

Introducing Berni Vincent, activist and artist

SPEAKER_00 0:40

Today I'm joined by an old friend of mine, Bernie Vincent. So Bernie and I met, I think we were talking about this a little while ago, probably about 20 years ago, and that's kind of giving away my age. In Hampshire, when I first entered the realm of disability rights and equality, we're going to talk about that a lot later. But Bernie mentored me and kind of gave me my grounding in disability rights. And so when I started the Equality Edit, she was one of the very first people I reached out to and said, Oh my god, I really need to talk to you on this is on this podcast. So it's really exciting that you're here today, Bernie. Thank you very much.

SPEAKER_01 1:21

Cool, thank you. Thank you for that, for that lovely introduction. Well, I can I can't believe it was 20 years ago. Wow, time just flies. It really does, doesn't it? Yeah. So so just uh just to begin um a couple of uh a short introduction to me. So these days I'm retired. I'm a disabled person, I'm a wheelchair user, I've been disabled since birth. I'm proud to be a disabled person. And I'm more recently uh identified with being neurodivergent, and that's a significant barrier for me, especially these days, because when I was working, I had lots of I had some great support from some great people, and and I don't have that support so much today, but I kind of wriggle around it and get by. Um so today I'm gonna talk about my experience of working in the disability movement, my experience of working in a user-led organisation, um, and the and and not just during the time that I've known SC but the early years as well. And I'm gonna give some reflections on where I th where I think we are today. And these are my views. I mean they do touch, they do touch on the collective, but I want to be sh clear in saying these are my views, and so I'm going to I'm going to talk about the past, talk about the middle bit, and talk about the present, and maybe a little bit on the future. But just to say also that these days I'm also an artist. I'm an ambassador for a wonderful organisation called Outside In who have supported me to start to develop a an art practice. And I was very successful in having a piece of art displayed, I suppose, in Sotheby's, which most people shouldn't would know, maybe that it's uh quite prestigious. It's really cool. It was it was it Christie's or Sotherby's? Sorry, I always get those mixed up, so maybe that's something that we can address in a minute. But yeah, it was Christie's. Thank you. Yeah, it was Christie's.

SPEAKER_00 3:21

Apparently, I wasn't the only one on the day either. No, I I did it too. So I rocked up with my friend to Sotheby's. I'm like, oh, we made it brilliant, I'm so excited. And I said, Oh, hi. And the security guard was like, Do you mean Suther? Do you mean Christie's? I was like, No, no, do you think I'm stupid? I mean Sotheby's. So we walked in and of course Christie's. And so we were like, Oh, let's just have a drink here. So actually, I went back a couple of days later to Christie's and on my own, and I'm glad I did because I just spent, I think I was there for literally two hours, just in those two rooms, looking at the the amazing installations um and the art from people. It was incredible, but I know we're going on to talk about that in a minute. I want to kind of, if if I can, kind of just go back to your beginning, your introduction. So you said you're proud of being a disabled person. Um, so am I, but can you just

What it means to be proud to be a disabled person

SPEAKER_00 4:17

because I think some of our listeners will be thinking, well, what do you mean? So can you just kind of talk about that a little bit?

SPEAKER_01 4:23

I think I think um, you know, the the proud to be disabled person is is part is very much developed because of my journey, because of my journey in meeting other activists and meeting other right on disabled people. Because you you have to put it into context, I I was born in the 1950s in the fifth. So I um so some of the things that disabled people have now to support them around to support them, but also um a higher recognition of inclusion, which isn't perfect, but it's better than it was, um, wasn't around in my day. So my childhood and I suppose my teenage years, I didn't want to identify as a disabled person. I didn't want to be a disabled person, it was a negative thing. Um because I because I was excluded from the mainstream, very much excluded from the mainstream. I mean, I went to a special school, I d and there are some good special schools, but mine was not good. It was uh very focused on therapy. So I I wasn't I wasn't offered the same the same opportunities as other people did, wasn't offered the same opportunities as my brothers and sisters, and I couldn't understand that they were going off to mainstream school and I and I couldn't, and I knew you know that I had an inquiring mind and all of that kind of stuff. So I was just isolated and I was just alone. And I think as a child and a young adult, adolescence is tough enough, you know. But I growing up in London, which was cool, but but I think I was isolated, I was lonely, I was angry, I was confused. So, and this in my mind was all down to my impairment. But of course, as I went along, my as my journey developed, and I I met other people, right on people that helped me to understand that my disability wasn't, my medical condition wasn't a problem. The barriers that society presents to me, you know, getting in my way, the attitudes, education, I suppose, at that time were just they were huge barriers to me and transport at that time. And I just felt different, but I wasn't but I couldn't at that time I couldn't recognise difference as being something to celebrate. It was just I I want to be like everyone else. And of course now, because I'm I'm a bit of a maverick anyway, but I can see that being different is a huge, it's great, it's really great. But they in those days I couldn't understand that. So it wasn't until I met other disabled people, um, and we we struggled along, rubbed along together and were able to talk and discuss and and debate and all of that stuff that I began to think, yeah, actually this is quite cool. So that's why I say I'm proud to be a disabled.

SPEAKER_00 7:01

I think that's awesome. I am as well. And I'm not saying this to blow your trumpet, but I didn't. It was when I met you and Robert Droy, who was on my last podcast, part of me, that I started to become proud of my um disability. And as I'm saying, not my disability, but proud to be a disabled person. Um and I'm as I said, I'm not saying it to blow your trumpet, but kind of being around, I think that's the first time I'd been around around truly empowered disabled people who were like, Well, fuck it, it's your fault that I can't get through the door, so I'm gonna crack through the middle of it. Yeah, and that is not my responsibility. And that that's that's also, you know, that was really awesome to me. And even now when I'm delivering training, I don't mention you two by name, but I talk about kind of that journey to my own empowerment um through meeting other people who were living it already.

Finding identity through other disabled people

SPEAKER_01 7:54

Yeah, thank you. That's that's a really cool thing to say. But you see, that that's so interesting because that was so my experience. You you didn't feel it until you met Robert and I. I didn't feel it until I met these other, you know, these other people, you know. It doesn't matter now in the context of how I talk about um disabled people collectively and through around the social model. It doesn't matter. But in those days, one was in a wheelchair, so I could see it, see that this person was disabled, and the other person I think she walked with a stick. And that and they were both really cool and and and and you know, philosophical and interested in exploring ideas and challenging and all of that stuff. I mean, this was the very these were the very early days that the very beginning of this kind of stuff. So it was the time it was the right time to be to be around. And you you know, you talk about coming into meetings. Did you say that you came into meetings with me?

SPEAKER_00 8:49

Yeah, yeah. I met you in the yeah, I met you in a um a co-production panel.

SPEAKER_01 8:54

Yeah, well, you see, it's very interesting because to mirror mirroring that my experience was very similar because as I said, I was angry, you know, I was confused, all the rest that I've just explained. And they said, come along to a meeting, and I thought, no, who's gonna be at this meeting? They said, other disabled people. And I was like, No, not a job. I don't want to go. And then somebody, I think it might have been a social worker, she drew drew alongside me and said, You'd be really good, please come. I said, Who's gonna be there apart from these other disabled people? Head of the council's gonna be there, Bernie, and we want to start making some changes. So I went along to this meeting, and this is where these two women were that I've just explained, and they didn't say much, they were really welcoming, uh, and and I I being outspoken and got lots of ideas. I just I said, I can't even remember. I mean, you know, this was a long time ago. I was in my twenties, and I I think we were talking about disabled people and and driving, and I was saying things like, We need to make it easier, don't you? You need to make tr you need to make driving instruction easier and all all the access stuff. And I I can't remember what I said. It it pressed somebody's buttons because after the meeting, these two girls came over and these two women came over and said, not girls, women, came over and said, Would you be interested in joining you know, this organisation? And I was like, and then I sat and talked to them a bit more and I thought, yeah, they're quite interesting. So I I went along and I and uh, you know, they they they were they were employed. What had happened is the local authority had got a small amount of money and they'd bid for this organization, or they'd bid on the local authority's behalf. And it I was going into a room and it was like a broom cupboard. It was tiny. Wow. Tiny, tiny, as tiny as you can imagine, just about get your wheelchair in there, and one desk, one phone, and that was all that it had in there. And I used to go in there maybe once for once or twice a week

Early meetings and shifting away from medical identity

SPEAKER_01 10:54

just to help out with the phones, because I had two young children at the time as well. I mean, very young children that had just started school. So when the kids is when the kids were kind of at school, I used to I used to go in and help out and volunte volunteer. And then they asked me to go to a meeting. They said what we're gonna have the first management, one of the first or second management committees. They'd got other people together, and they asked everybody around the table to, and I really didn't want to go to the meeting. It was the same scenario to have to these people because I'd done everything in my everything possible to get away from disabled people. I didn't want to associate with disabled people because I'd been forced to through school and medical stuff and everything else. And I went along to the meeting and we sat down around the table, and they said, like, can everyone introduce themselves? And I waited until near the end. And everybody around the table introduced themselves in relation to their medical condition. Oh, really? Wow. Like, my name's Pauline and I've got MS. My name's Sid, and I, you know, all of that.

SPEAKER_00 11:57

So, like, as a person with cerebral palsy, this is my opinion.

SPEAKER_01 12:01

That was their whole identity. Their whole identity was fixed around their medical condition. Jeez. And I got it got to me and I just said, uh, I can't remember what I said. I probably conformed because I was feeling uncomfortable. I can't remember, but I remember that feeling very strong. Why are they all talking about their medical condition? And that's how it started, and then I got to know these the people in the organization more and we began to develop ideas and stuff.

SPEAKER_00 12:27

My gosh, so so was it that the people were introducing themselves by their medical condition, that was their identity because they were disempowered, or was it for a specific reason?

SPEAKER_01 12:38

Well, I I I suppose I suppose it I suppose I don't know, I don't know the re the answer to that. I I can only I can only surmise. I mean, in those days, disabled people generally disabled people weren't empowered. In those days, disabled people didn't have a sense the majority, not all, because there were little grant there were little bits beginning to develop. But but in those days, disabled people didn't have a sense of sovereignty of who they were, of the fact that you are in your own right powerful, you know, so you don't have to you don't have to and I was in a similar place, to be fair. I didn't know that I was powerful in my own right, but I knew I wanted something better.

SPEAKER_00 13:20

But I think I think we, you know, in some ways I think I mean I I always wonder whether we're in the echo chamber and that we think that we're really kind of enlightened as a society. I mean, obviously we know what's going on in the world, um, but we think we're really enlightened as a society. But is it the that we are around people who are empowered? So I was in a meeting this morning where I do say I'm a disabled person because it's wrapped up in what I do for work. You know, I run Celebrating Disability, which is a user-led organization, and I'm really proud that it's a user-led organization, and we only hire disabled people, and we're a disabled person's organization. So it's very important that I mention that I'm a disabled person. But um, somebody said, Oh, I should introduce you to blah blah blah. She's wheelchair bound. Um, and obviously that's not what the person thinks about themselves, but that there's still this kind of perception that you must know this person, I must introduce you to this person, you'll get on really well because they're also, you know, and the terminology wheelchair bound, they're also stuck like you, kind.

SPEAKER_01 14:29

Yeah, yeah, yeah. But I don't know what is that is that about that about living in living in a small world? That's about the assumptions people make, actually. I mean, yeah, isn't it?

SPEAKER_00 14:41

Yeah. I think it's also it is about the assumptions people make, but it's also I think about I think sometimes I still hear disabled people introduce themselves like that. I mean, you're talking about kind of how people introduce themselves when you start to go to meetings. I remember at school, people would sit around talking about the medications that I mean I went to special school as well. They sit around talking about the medications they were on, and even now, um, you know, sometimes I see somebody on the train who a disabled person on the train that I haven't seen for a while, and they give me their whole like last month's kind of background of their medical condition for hospital visits. And it's like, I'm gonna put my headphones on now because I don't care. But you know, I think I think there are us that are empowered, but I think there's also a lot of us that are still really disempowered and still think that you know we only thing for us is to talk about what's wrong.

SPEAKER_01 15:36

Yeah, absolutely. And that can just be down to personality though, can't it? It it it it doesn't necessarily mean it's down to you know because not everybody's politicized because I think it's a political issue. So so you know, not everybody not everybody's op wants wants to be on that bus. They just don't. I suppose I I came and you came having some idea of you must have had some idea of rights, even at an unconscious level, or or wanting things to change, you know, or progress or or all of those things. I suppose I I came from that because I came with that. I think you know, maybe it's the same with you, but I think I was a fighter.

Growing up around political change

SPEAKER_01 16:18

I just came as a rebel.

SPEAKER_00 16:20

Yeah, no, I think so. And you know, rebel I used to call myself a rebel without a cause, but now I think it's I'm a rebel with a cause. But yeah, I do. I think that my mum brought me up to you know, she didn't politicize anything for me, but she she always says, you know, you deserve better, essentially. And that was through her behaviour and her language, you deserve more from life.

SPEAKER_01 16:45

Yes, exactly, exactly. And you see, for me, I grew up in an Irish family, and my both my family were politically aware. I mean, uh as you s just as you say, it was in their behaviour, it was in it was in the the s the conversations, it was in the reading that they did, the papers, newspapers that they read. It was it was just in those things, you know. And also I think for me, I grew up in a time of revolution, you know. To put it into context, I was very fortunate to have grown up in West London in a time of revolution. Yeah, you know, and and that you know, Vietnam was going on, black power was going on, all of that all of that really good stuff. People were beginning to stand up and shout, and and Greenham Common and all of those all of those environmental uh uh change movements were happening all around you. So um I think all of that uh was very fertile and and a a good time. It was a great time to grow up.

SPEAKER_00 17:45

I'm guessing that you didn't have to search very far to find like-minded people really.

SPEAKER_01 17:50

No, no, no, no, and not just like-minded people in well, maybe in terms of disabled people. I didn't have any like-minded people in in in terms of disabled people. But my you know, my best, my best friend, I think her family were very involved um in in being aware of the struggle. They were a Jamaican family and she was they were very aware of the struggle and that was going on, and and you know, yeah, it was just that kind of time really. So I'm not aware of of of being reading or I don't know, it's a funny thing.

SPEAKER_00 18:27

I did it I really want to get into this because I think it's such an amazing kind of journey that you went on, but you know, even without people saying it every day, kind of it's in the air, isn't it? It's yes. That that kind of excitement and that energy is is all around you or the time.

SPEAKER_01 18:44

It's all around you, it's in the music, yeah, it's culture, it's in the music, it's in everything around you. I mean, you know, you'd walk down the street and you'd hear Bob Marley, or you'd walk down the street, you'd hear Marvin Gaye, or or uh or um and Irish music as well, because it was a very difficult time in Irish in Ireland's history as well, you know, around um the struggles that was going on in the north of Ireland. And of course that was that was very much talked about at home. So whether somehow that gets into your psyche, or as you say, through behaviour, through the food you eat, through the people that you mix with, I just knew that there had to be there had to be a better world, not just for me, but for all disadvantaged people.

Everyday barriers and shared experiences

SPEAKER_00 19:26

So we went out for and we are gonna get back to your kind of story. We went out for lunch a few weeks ago, um, and we were in a restaurant, and the waitress was quite rude to me. And you saw that I was upset, um, and and the way that it manifested, the rudeness manifested, is that I asked for my food to be cut out for an access requirement, and they made it really difficult. Um, and you said, God, I can't remember the line now, but it was from a Marvin Gaye song, and I actually put it into a training session as a result. Yeah, I know that you're gonna say. Yeah, you said the way they live our lives. So the way they live our lives. Yeah. And the point I want to make just now is that in that moment, and again, this kind of seems like I'm blowing a Bernie's trumpet episode, but in that moment, it helped me feel better because it was something to kind of, I'm not the only person that goes through this, I'm not the only person that's oppressed in this way. Other people have articulated it in different ways, and it must have been like that in the time when you know this revolution was happening and all of this going around you that wherever you were hearing the music, kind of listening to people's speeches and stuff. It's it's in everything that everybody's doing and saying. And so it it it kind of it must must have felt in some way a little bit comforting as well.

SPEAKER_01 20:48

I think it it started to feel comforting when I met with other when I started to meet with other disabled people. I mean, I'm I'm talking this bit that I'm talking about now was was when I was a teenager. Um and as you say, it was everywhere and it was exciting, but I didn't really understand, I didn't really I didn't really know how to to articulate that, what to do about it. I just found it exciting. I mean, I remember watching the Vietnam War on TV and and I was absolutely appalled. And I remember hearing about the average soldier coming back from Vietnam was 17, you know, and I just could not believe it. I could not believe it. Um, you know, my f m m and and my family and my and my my best friend, I I had two best friends, one was from Mauritius and one was from Jamaica. And the one from Jamaica, they they were um they weren't that well off, but I was amazed how how rich and what a life of value it was, you know, because they do they do these things like if they didn't have they'd have these parties with these great big speakers and they'd and they'd ever invite everybody in and then the to pay the gas bill, they'd they'd sell the food and and they'd have DJs. Jays in there and all of that stuff. And I was always invited. And I just felt felt so privileged to be part of that. And so the the different ways that people respond to the barriers that they face in life and how they overcome that. And then and then I and then I went away to college. And that was another exclusion that I didn't want to go to. But I did that because it was my only way of get of moving out of my parents' house as a teenager. It was the great escape. But there I met some really cool people as well, but not political, but people that were having having fun. And I began and I and I began to see it's not all about misery and and because you know how being a teenager is, it's all in your head, isn't it? And you think you're the only one. And so then I then around that time I met my husband, and he was very he was quite alternative. And then what happened? Then I had children, and then I it was only then when my son was four months old that I began to get involved in the movement. So I was a young mum.

SPEAKER_00 23:01

Because you had nothing else to do.

SPEAKER_01 23:02

Struggling to get out, struggling, isolated. I mean, it's isolating enough being a mother with a young baby, but when you've got an impairment and nobody around you is disabled, there were very few disabled people that had parents. But that was my idea. The whole thing for me with that was, oh, I'm normal. This is a move towards normality. But it yeah, yeah and it which wasn't always the best way to plan a family which isn't the best way to put a family. But it was a step. It was a step on my journey, I think. My me taking control of who I am and what I want out of life, and I'm not gonna have this. And then I met these other people, and it was like a magnet that I was listening to them talking about their experience and other people talking about their their experience as well. The net began to widen, and then this movement, this idea began to spread throughout it wasn't start didn't start in London, the movement actually, I suppose you could argue that it officially started in Hampshire. Because there were four disabled people in Hampshire that decided they were going to move out of residential homes, and that's when direct payments started.

SPEAKER_02 24:13

Yeah.

SPEAKER_00 24:13

So so tell us about your kind of your experience and how you got involved in the movement or how you were involved in the movement, because I know that some you were involved in some really, you know, prevalent and important things that still

Getting involved in the disability movement

SPEAKER_00 24:29

impact the way that disabled people are able to live their lives today.

SPEAKER_01 24:33

Today, yeah. I mean it wasn't just me. Um what I'd say is that there was pockets all around the country that were doing similar, but my experience was so I went to this meeting and I expressed my uh some of my ideas, and then I went to this other meeting and and uh began to attend this committee meeting on a regular basis, and I'd go home at night and I'd when the kids were in bed and I'd write up agendas and we'd chat on the phone and we'd chat on the phone about ideas and um about you know what we felt the committee needed to discuss. Um and I can't remember how it happened, but the local authority that I was living in, this was way before direct payment. So so the local authority that I'd live in in got some money and wanted to develop a centre for independent living, which started out with with very good ideas. So I began to work with that that project, and what we did was we put together um a list of we put we just brainstormed what were the things we felt we needed to change. The things that had come not just from our point of view, but the things that had come up in at the group meetings and stuff, and we had this conference where we had workshops on education, employment, benefits, money or something something like that. And we got we put people into it workshops and we just asked them to discuss. And out of that we got loads and loads of stuff, really good stuff, and that was used as a as a basis for the for the um for the centre. But unfortunately, that centre, in my opinion, started out with very good intentions but didn't didn't continue. But at the same time, the organization that I was originally involved in, you know, the one that I said was in the broom cupboard. It was so quaint and so f and and and so raw. So you know these things don't happen in big conference rooms, they happen in small conversations in the corridor or this kind of stuff. So that had got I think they must have only had temporary funding. So that went. But another another organization called uh another organization of disabled people started in the local authority. And I was a volunteer and I was involved in that as well. And I can't really remember much about what we were doing, but we were, you know, things like consulting the local authority would send us information and and we would consult on small bits and pieces, a bit like the PEP was was doing, and that kind of developed as well. And then I've been doing volunteering for all these years. In between that, I also did training as well. I was going to college, so I've gone to college doing volunteering and had children at home. And then I moved, I applied for a job in that local authority and I got the job. And then I worked in this, it was for an NHS trust, and I stayed there for maybe five years, and then I got another job, and that was the beginning of my professional career. Um and then I then I, you know, and then I'd moved out of London and moved down to Dorset where I live now. And for a long time I worked for Southampton Centre for Independent Living, which was a fantastic experience, and I I met some really wonderful people and learned a lot. But between going to Southampton Centre for Independent Living, I was managing a stay centre because I was thinking I could change the world, you know, on my own. But that became a bit I did did do some good stuff, but that was you can't change the world on your own. So it was it wasn't, you know, I had to be flexible and adjust. But when I came to Southampton, I'd by that time I'd done I'd developed a small consultancy of my own, as well as working, as well as going to college. And I was um I was working training social workers in uh disability quality training, which I'd kind of learnt. I'd also had my own tr I'd also been trained as a trainer by other disabled people that came from Southampton before I went there, and another woman. So by this time kind of the networks were beginning to spread and people were beginning to question what they actually needed to quit to equip themselves as leaders and how they could and how they could then use those skills that they gained, how they could pass those skills down to other disabled people. So we there was like a system where it you were constantly mentoring, constantly passing down to the grassroots all the time.

SPEAKER_00 29:16

Do you think

What is missing now, peer support and connection

SPEAKER_00 29:17

that's what's missing at the moment from from how the movement has become so segmented and lost?

SPEAKER_01 29:23

Yeah.

SPEAKER_00 29:24

There's not that peer support and that peer learning.

SPEAKER_01 29:27

Most definitely. I mean, I think one of the really powerful things that you said a minute ago that was really significant for me in all of it and for others that I've worked with is positive role models. You know, there weren't any in the very early days. So if you haven't got a positive role model, somebody to mentor you, you're gonna go off on your own, aren't you? You know, you've got an inquiry mind and you want to change the world, so you're gonna go and you're gonna research and all of that. I think I think, yes, I think there needs to be a that we had we had a network of peers, and then we then there then there was a almost like an umbrella where we would all meet, all the all the all the centres for independent living, which who were you know had right on disabled people, had uh like an umbrella organization and they would meet together to network to learn from each other continually. And and I think that could be why we have got the we've got the fragment you know, fragmentation that we've got now. Plus, most of it is online, and you know, online is fantastic. I mean, don't get me wrong, it sets so many people free, but it's not the same. It's not it's not the same. I don't I can't I don't know what it is about it, but it's not the same as meeting somebody physically for a coffee. And the problem is you can't always when you're developing these things, these these great ideas, these changes, they happen organically when like-minded people come together. And I don't think you can always say, Oh, let's have an agenda, we're gonna talk about this. You just get people together that want to bring about change, and you just talk about how you're gonna change the world and what needs to change, and little sh little shoots come from that.

SPEAKER_00 31:12

And you can't do that online, yeah. No, you can't, like, we're gonna put you into a breakout room now, because you can't shout across as well. You can't just do it online on the other side of the room.

SPEAKER_01 31:22

I think you could do some online, but you can't do it all online.

SPEAKER_00 31:25

Yeah,

Online vs real-world spaces

SPEAKER_00 31:26

yeah. And also it's that experience of getting into the room as well. So before lockdown, CDC were predominantly face-to-face because I think that that I, as well as the rest of the world, hadn't really considered virtual learning when it comes to kind of live training. No, I'm not talking about e-learning, I'm talking about live training. And then lockdown came, and then we all went online. And then I would say that 70% of our services are now delivered online. And when I go into a physical space and deliver training or consultancy, I remember, oh my god, all of this stuff that I can bring with me to the delegates right now, live in the space, because of what I'm seeing, what I'm feeling in this atmosphere, what I've just been through to get here. I can bring this all in. And I think whether it's a training session or whether it's a kind of a community meeting or whatever it is, that is what's missing from a virtual space. There's no background, you kind of appear out of nowhere without any backstory of how you arrived. I hadn't thought of that.

SPEAKER_01 32:35

Yeah, you know, the coffee and the chat.

SPEAKER_00 32:37

Yeah, and the slide just didn't open the door for me, or oh my god, I fell off the curb, or maybe that's just my experience. Yeah, I fell off the curb wherever I go. Um but yeah.

SPEAKER_01 32:48

And and I think what's often underestimated for people in our community is you know, for me, one of the huge barriers is our T IT. Okay. So on the neurodivergent side, and I've and for me to even get for me to get to set up a laptop, if I haven't got support, let's face it, many disabled people are living in a world where they haven't got enough support. And if they have got support, then they've got support for the basics, like personal care. Yeah, yeah. But they haven't got support to to set up their laptop and to have a chat with friends, to prepare their agendas or whatever. And so for me, setting up a laptop, I'm already I'm coming to that to the forum with all this in my head. And I've got to try I've got to bring that down before I begin. And and it's like and the same argument I think exists if you're coming when you if you in the stuff that you're just saying, because if you're coming to a room and you've had trouble with your train because you haven't been able to get on your train, and you've done everything possible. I mean, we work 150% harder than everyone else to do to do what the average Joe does. I don't want to be an average Joe. So so I work so much harder to to to make that happen, and often that isn't that isn't recognised. So for in some ways, uh IT is accessible to us, but in other ways it isn't.

SPEAKER_00 34:20

Absolutely. I remember at the beginning of lockdown, one of the things that people would talk about, because there's always people talking about the business case of disability inclusion, and I quite often say that that is is fundamentally ableist. Why does there need to be a business case to be inclusive of a human being? But anyway, one of the business cases people were using in lockdown was oh, it's digital, so it's successful. It's dangerous to think like that. It's so dangerous to think like that because the rise of technology has has compounded exclusion even more.

SPEAKER_01 34:52

Yeah,

Technology, access and hidden barriers

SPEAKER_01 34:53

yeah. In some ways it's a great help for me, but in other ways it's an absolute it's a huge barrier, a huge barrier. And if I haven't got the support to work that through, then then I'm gonna leave I'm gonna, you know, that's just more overwhelming. I I don't want to just focus on me. Let's just say people like me. Yeah. You know, as you say, it's a huge, it's it's a huge assumption to think, you know, well, you know, if this person needs support with admin, let's just give them a free fund them to have uh to pay for chat GPT every month. Well, no.

SPEAKER_00 35:26

And that's not saying that these we're not saying that these technologies aren't helpful, but they're not helpful in isolation. You can't just as you're not just giving the tool and say off you go. It's about helping people, seeing the difference. I remember a blind person telling me a story about um a reasonable adjustment. Um, so he he'd requested, and the company had done a really good job at reaching out to him and saying, Are there any access requirements that you have? Can we talk about reasonable adjustments for your first day? And said, Oh, I need screen reader software to be able to use the computers. And so he arrived at work on his first day to find a package in a box on his desk.

SPEAKER_02 36:05

Yeah.

SPEAKER_00 36:06

Um, so it's so important, you know, that the technology is great, but only if it's helped to be implemented in the right way. Wow. The way they live our life. I know I'm gonna start it was a bit incredible. And I use that example again in training sessions to really because I think it's a really tangible example of you have to think it through from beginning all the way to end.

SPEAKER_01 36:29

Yeah, and it's about I mean it's kind of we know companies are under nobody's money's tight and resources are tight, but so often these things are just about how we can connect to another human being. Just allow yourself to be vulnerable just for a little while and put yourself in that person's shoes. Don't you know, and and think, and think, how can I help? What's gonna make this person's day just a little bit easier?

SPEAKER_00 36:55

Well, that is that's what it is, really, isn't it? That's all it is. How can I make this person's day a bit easier? And actually, if I offer and they say no, it's not a rejection to me. It's just, you know, that person is is able to do it themselves.

SPEAKER_01 37:10

And equally that applies to us as well. Because you know, we mustn't say everybody can contribute. It just makes the world go round. It's just makes it's it's it's it's not always about the great the great the great expression. Sometimes it's about something gentle, something more connection.

SPEAKER_00 37:29

I think it was a few years I heard Mick Scarlett talking, and he's a disability activist as well, about um

Rights, law and human connection

SPEAKER_00 37:38

pre-DDA, so pre-disability discrimination act, and then post-Equality Act 2010. Yeah. And what he was saying is pre-1995, when the um DDA, the Disability Discrimination Act um came into place, things weren't perfect, but it felt a lot more inclusive um from his perspective, because he would rock up at, let's say, a club, and there'd be three steps to get into the club, and the security guards would say, Okay, come on, we'll lift your wheelchair and we'll help you in the club. And now you rock up to a club, and I actually remember that not the same club, but me and my friend Lorna, when we were at drama school, we used to go to this club called the Flute and Furkin, and it had four steps up, and we just rocked up and the bouncer would be like, not you again, but in like a really friendly way, and carry us in our electrical up the stairs, and then guard me while I was adamant that I was gonna dance on the table, and there was no no, you can't do that, that's dangerous. Yeah, and I think that's the point that Mick was making that we have this act today, and I know there's you know, there's there's controversy around the act being brought into one, but there's a lot of good things about what the act does as well, but also it takes away from the spontaneity and the human connection, yeah, yeah, it does, and it puts people off, I think.

SPEAKER_01 39:00

People think, oh, oh, you know, I've got to get it. It's it's difficult, isn't it? It's difficult just be accept trying to be accepting of each other and but oh, I mustn't say this, I mustn't say that because it's not politically correct. Or I mustn't lift this person, I mustn't offer to do this because of health and safety legislation. You know, and that yeah, I that I can relate to that as well. But there I mean there are great things that have come out of the DDA. Oh, I'm not no, I mean I was in yeah, I know. Um the DD the the the the Equality Act and the DDA were groundbreaking for their time and yeah you know to be celebrated. But yeah, it's an interesting point of view.

SPEAKER_00 39:36

It's I re you know, I remember back in the 90s, so I was born in the 80s, so back in the 90s, my first and I didn't even think of it as a negative experience at the time, but thinking back, I was like, oh my god, that was awful. My first experiences of using a train were sitting in that guard's wagon because there was no either we people listening to this this episode thinking, well, what do you mean? But you know, there were no spaces for disabled people to sit comfortably on trains. So we used to sit in that middle carriage where the guards walked through where you kept bikes and stuff. And at the time it was just what it was, but looking back, it was awful, wasn't it?

SPEAKER_01 40:16

Yeah, it was really awful. But having said that, I remember the first time I went on the train on my own, and it was quite late. It was quite late. It was probably for me, I mean it was it was probably 25, maybe 30 years ago, because I had a PA that used to drive me to work, and I and one day the PA couldn't come. I thought, blow this, I'm going, I'm going, I'm getting the train. I didn't know I didn't know what I was doing. And I just I just rocked up at the train station and as you say went through it all. But I remember this real sense of excitement. Hey, I'm just getting on with public transport, just like everyone else does. You know? Um I remember saying that to Robert, and he said, Yeah, you felt the same. And it and yeah, just to be included, that's where exclusion does. And it took me a while to sit back and think, wow, well it's nothing major. I mean, come on, you've only just you've only just uh used the train on your own. Yeah. But I don't know, there was something about being together with others, being part of the bigger picture.

SPEAKER_00 41:13

And I yeah, no, I agree. And you know, different times for the both of us, but I do agree that you know, the first time so I went to drama school and that was exciting enough. I never thought I'd get into drama school full stop, not necessarily because I was disabled, but because I was disabled and because I thought I wasn't that talented. But it turns out I was both disabled and talented. So I went to drama school and the excitement of being in the place where I only dreamt of being, but then on top of that, the excitement of just being treated like another student, because the drama school I went to had a course designed for disabled artists, um, and it was run by a disabled activist. Wow called Mandy Moore, and she was a blind lady, and so because they were used to having disabled people in the in the drama school, you went, you breathed in the direction of a door and it would open. And I just thought, that's amazing. Oh my god, that's amazing. I don't need to ask anyone, nobody's telling me to be careful. And then I went to the cafe on my own, and the woman behind the counter at the cafe said, Would you like me to carry it to the table? And I was like, Oh my god, I didn't even say anything. I didn't even think. And you know, I burst into tears, and when I was 19, I was embarrassed about crying, but it was just it was such a special moment. Yeah, the lovely And as you say, it's it's normal, but for us it wasn't normal.

SPEAKER_01 42:39

Yeah, other 19-year-olds take that for granted. Something so simple is a really good example of what it feels like to be included and the impact of being of exclusion. Yeah. As well. Yeah. Because you come to accept, and I think the more you accept, the more you put up with. You know, you the smaller you become, the smaller you become. Yeah. Yeah, absolutely. Except begin to accept less and less, and you lose sense of who you are. And you, you know, as I said, you know, you've got a right to stand in your power and be who you are. And that's I think what we what young people need to learn need to know.

Discovering art and Outside In

SPEAKER_00 43:16

So if you I want to talk a bit about your art. I want to talk about what your art is, and I want to share some links to your art as well, which will be available in the show notes. But also, if you want to, um, talk a little bit about how your experiences that we've talked about so far, if they at all influ impact the art that you do today.

SPEAKER_01 43:39

That's really that's really interesting that you should mention that. So I attended out an art group on a monthly basis. I'm now an ambassador for a l a great organisation called Outside In. And Outside In exists to support creative artists, well, it is artists that experience barriers to the mainstream. Um And the term outside in is is uh it's been around for a long time, but I think it's now beginning to get recognition. And what it actually means, originally what it actually meant was that um you're an outside artist or there's other terms, raw artists, folk art, other stuff. Um if you hadn't if you hadn't attended art college. Okay. So I attend this art group on a monthly basis where I've learnt so much from other artists and I've made some great friends. And um as as one of the opportunities that are available to outside in artists is I hope this is accurate, every other year they give artists an opportunity to submit their work for a national exhibition. I submitted some of my work. I I just just thought, I'm just doing this exercise just to do it, if you know what I mean. Just to be just take up the opportunity. And I was my art was selected to be at Christie's. Um so I submitted my work and I had my and had uh it was submitted, it was at Christie's for maybe two weeks, and it was also in a in a gallery in the Midlands. So I'm a mixed media artist, but that means that I use lots of different mediums, so you know, different paints, pastels, pens, anything goes down on the paper. Um and more recently, and I've come from nowhere, I've always been interested in art, that's what I was saying. I've always been interested in art, I've always wanted to develop it, but the opportunity just hasn't been available to me. And one of the things that I remembered when I started to go to join outside in was that when I went on the first day of my secondary school, and I was really excited about going to secondary school, they showed me round the round the school, and I opened a door, and it was an art room, huge art room, and it had everything in it, like everything, you know, silk screening, working with fabrics, textiles, all the rest. And I opened the door and I said, Wow, what's that? What's this? And they said, This is an art room. You can go in there if you like. And I said, Can I go in there? Can I really can I can I go in there and look at the stuff? Will I get a chance to learn that? And they said, Yeah, definitely, definitely. You can go in there whenever you like outside of lessons. Wow, I'm really excited. Three weeks later, I discovered that they got rid of the art room. No, they got rid of the art room and turned it into a physiotherapy unit. Oh my god. Yeah. And I I remember it was like this thud. It was just wow. And they also had a science lab, and I was really excited about that as well. And then they got rid of the science lab around the same time too. That's medical model in practice, isn't it? Yeah. And I was so brokenhearted. I was just so sad because you know, I was like twelve, eleven, twelve. Yeah. I knew that I wanted I I didn't know how, I didn't know, but I knew there was something about art that I loved. So go when I started without Sardine, I I had no experience, none whatsoever. You know, I'd say things like I drew this picture, but it was absolutely rubbish, and I bind it. And the teacher was saying, Don't talk about your art like that, Bernie. It was which is right, which is correct. I'd say the same to the to a new person coming up now. I'm uh I'm still a new person coming up. Yeah. So I do mixed media art. But more recently I've I've I've done I I've done something yesterday and it's all very abstract what I do. And uh I thought, you know, I'm gonna try I've been thinking throughout this whole process, I want to try and find a way of representing my experience as as a disabled person in my art. And

Disability, identity and creativity

SPEAKER_01 47:44

it's just starting to I think it there's very small beginnings, but I don't want to say too much about that in case I because it doesn't happen.

SPEAKER_00 47:52

Can you talk about how you think that your experiences as a disabled person politically and otherwise have contributed to to kind of the art that you do or influenced?

SPEAKER_01 48:04

I think it's interesting that the art I'm into is very is very layered. There's lots of layers to it. There seems to be lots of by that I mean depth. That's um I mean the art the piece of art that I actually the piece of art that I submitted to the exhibition was about neurodiversity and I didn't realise it until after until about I just did it and I didn't realise it what it was about. I woke up in the middle of the night and had this epiphany that it was this is the piece of art that you're gonna submit and did you know this piece of art was about your narrow diverse and brain? And honestly that's true, and I didn't, so I got up. So I have kind of made the headways to it before. But I did something yesterday and a a quirky person in a wheelchair seemed to emerge. I would they such a difficult question to answer. Well, it might not be They've shaped me into who I am. I mean, I wouldn't change that part of my life at all, you know. They've they've opened my eyes to different opportunities, they've met great people. Um I always try and listen to other point you know, although I have uh ideas, I like to listen to uh the other point of view, the other opinion. So I've had opportunities to debate that, to better understand that. I've had it's given me work with fantastic people and fun and travel. I mean I've travelled as well with and I've done all of I've done that with disabled people, we've kind of rubbed along together and we've had such good fun. Despite all the barriers, we've found ways of overcoming them together. And I those other people, they've they've showed me the way. They've showed me the way. I mean, I I'm very fond of that saying we stand on the shoulder of giants. And we really, really do. The people that I met, the people that I've met along the journey, they're people that did it before I was doing it. And their experiences were different than mine, and that's tested my thinking and challenged me and helped me to kind of find ways round the bend of doing things. There's not one way, there's lots of different ways, but there are certain principles that you need to stick to but I believe, you know, treating people with respect, believing in equality, that you know, and all of those things. And difference is to be celebrated no matter what. And it's and and I mean difference in everything. I mean the the current debate is horrif some of the stuff that's going on, it's not even debate, it's not even it's single-minded thinking from becoming from the wrong place, is is quite frightening, and I try not to listen to it. But we always have to think we think out of the box, and they taught me all of that. I mean, I came with the capacity to be able to do that, but it they helped me to develop who I am, and you know, that state and that's where I am today. I still keep in touch. I'm still I'm a reluctant follower of politics. I try and minimise it because it makes me sad, and I think of all the things that the movement achieved and all the great things that that right on people out there are still doing, but there's so much against us now. It feels like we're going backwards, you know, with the with some of the attitudes, narrow-minded thinking and bigotry that we're hearing, you know. But we've got to we've have to keep pushing forward. We have to do it together, you know. We have to be one voice, and we have to remember that all that that there were people that did it before us, and we have to look to them as the pattern. They are the pattern they can show us, and we have to be open to that. That's what it that's what the movement is giving me.

Advice for organisations, co-produce and be human

SPEAKER_00 51:32

We have two groups of listeners to this podcast. One group of disabled people themselves, and another group are leaders within companies leading on in quality and inclusion in their businesses and influencing not only internally but externally as well. Um so not asking you a big question or anything, but but if there was anything you would say to people um to either develop community, continue the movement and continue kind of keep the faith, um, what would it be?

SPEAKER_01 52:07

I think that the being human thing and putting yourself in in other in another's shoes is is really quite significant in as many things as possible. And and avoid tokenism. I mean putting a box on a table, maybe maybe for somebody that doesn't even can't see the box, I'm assuming. Mm-hmm. Maybe can't open the box, can't set the system up without as the organisations and projects that I've been I've been privileged to work in and be part of the movements and stuff, have always managed on nothing, you know, and it's so much harder now. So I'm talking about resources. So I think if companies could look at what resources they have and really examine those resources in the context of inclusion, it doesn't have to be about money, you know. But but but if you have got a little bit of money, then look at what you can do with that money to make a difference and co-produce that with the communities that you're going to co-produce that with the communities that identify your community that you want to work with. You know, is it disabled people or whatever? I mean, I'm talking about disabled people, but if it's disabled people, be broad in your thinking. Do not just get into this thing of disabled people are just wheelchair users. It's not only about disabled people that have obvious impairments that you can see. You know, there are what about people with mental health impairments? What about people with visual impairments? All sorts of things. So be broad in your thinking, identify what you want to do, be broad with your in your thinking and co-produce that essential, essential stuff doing with the people that you're hoping hoping to offer that to. I remember years ago I was I was successful in getting a um a a bursary to support my business, and I was funded and I applied for this and I got it. And it was offered by a very big corporation, and it was a wonderful opportunity, but it wasn't well thought through. And it wasn't because it wasn't co-produced with the people that you're offering that to. So that's my fur that would be my first one. So if you've got a little bit of money, think about what you can do and think about who you're going to do it with, but co-produce there. And the second one I would every whenever always put yourself in another person's shoes. Be human. Don't be don't be frightened to allow yourself to be vulnerable, to be vulnerable, because we live in a vulnerable world all the time. I feel vulnerable when I can't get on the train. I think I've been with you and you can't get on the train and and because and you've done everything you can to book that train and organise yourself. And that takes you as far more time than it does everybody else. So just remember things like that. Because if you're real as a person, then you're gonna make good connections with others. That's what that's why Brilliant.

SPEAKER_00 55:03

I have nothing to add. Um is there any we're coming to the end

Final reflections

SPEAKER_00 55:07

of our episode today. Is there anything else you would like to share?

SPEAKER_01 55:11

No, I think I think I've I think I've I think I've covered most most things. I can't think of anything else. It's been nice to talk about my art, thank you. Because that's really why where I'm at these days. Anybody can join outside in. Uh it's open and it's free to join. If you're if you're inter if you're an artist, um, you know, just the person who wants to move forward with your art.

SPEAKER_00 55:36

Or anybody from from any of these marginalized communities.

SPEAKER_01 55:39

Yeah, it's not, it's for people that uh uh for people that um experience uh uh disadvantaged communities. So it could be carers as well, it could be uh substance misuse, it can be any any of those groups. So yeah, thanks for pointing that out.

SPEAKER_00 55:56

Amazing. Thanks so much, Bernie. We will put a link to Bernie's Art. Can I put a link to the art and can people access your art online? Yeah, they can they can look at my platform. I okay. We will put a link to Bernie's Art and also to Outside In in the show notes as well. Yeah, and I'll just say that my platform is work in progress. Okay, she'll hear you. Just want to say thank you so much for um coming along to talk to me today on the Equality Edit. I've really enjoyed this conversation. Yeah, thank you. Thanks everybody for tuning in, watching or listening, or however. So if you would like to get in touch and tell us what you think, please add it into the comments and we will read it. Um and we look forward to seeing you again for another episode really soon. Bye everyone. If you're watching on YouTube, don't forget to like, subscribe, and press the notification button so you don't miss anything. If you're watching on Spotify, give us a five star rating.