Disability Pride, Community and the Disability Movement

Berni (00:00)
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 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

Esi Hardy (00:31)
Hi everyone. And thank you so much for coming back, whether you were watching or listening to another episode of The Equality Edit. Today, I’m joined by an old friend of mine, Berni Vincent. So Berni 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 Berni 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, my God, I really need to talk to you.

on this is on this podcast. So was really exciting that you’re here today, Berni. Thank you very much.

Berni (01:21)
Cool, thank you, thank you for that lovely introduction. I can’t believe it was 20 years ago. Wow, time just flies. Yeah, so just to begin a couple of 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. ⁓

Esi Hardy (01:29)
It really does, doesn’t it?

I’m not a big, educated person. I’m

Berni (01:47)
more recently identified with being neurodivergent

Esi Hardy (01:48)
more personally, I don’t quite speak.

Berni (01:53)
and that’s a significant barrier for me especially these days because when I was working I had lots of support 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 so today I’m going to talk about

my experience of working in the disability movement, my experience of working in a user led organisation, and not just during the time that I’ve known SE, but the early years as well. And I’m going to give some reflections on where I think we are today. And these are my views. I mean, they do touch on the collective, but I want to be clear in saying these are my views. And so 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 an art practice. And I was very successful in having a piece of art.

displayed I suppose in Sotheby’s which most people would know maybe that it’s quite prestigious. ⁓

Esi Hardy (03:08)
It’s really cool. Was it Christie’s

or Sotheby’s?

Berni (03:12)
Sorry, I always get those mixed up. So maybe that’s something we can address in a minute. But yeah, it was Christie’s. Thank you. Yeah, it was Christie’s. Apparently, I wasn’t the only one on the day either.

Esi Hardy (03:20)
That’s all right.

No, I

did it too. So I rocked up with my friend to Sotheby’s and I’m like, we made it. Brilliant. I’m so excited. And I said, hi. And the security guard was like, do you mean Christie’s? I was like, no, no. Do think I’m stupid? I mean Sotheby’s. So we walked in and of course it was Christie’s. And so we like, let’s just have a drink here. So actually I went back a couple of days later to Christie’s.

Berni (03:41)
You always think I’m stupid.

Yeah.

Esi Hardy (03:51)
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 amazing installations 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 I can kind of just go back to your beginning, your introduction. So you said you’re proud of being a disabled person and so am I, but can you just…

Berni (03:55)
Beautiful.

Esi Hardy (04:17)
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?

Berni (04:23)
I think the proud to be disabled person is very much developed because of my journey, because of my journey in meeting other activists and meeting other right on disabled people. Because to put it into context, I was born in 1950s, in the 50s. So some of the things that disabled people have now to support them around…

to support them, but also a higher recognition of inclusion, which isn’t perfect, but it’s better than it was, wasn’t around in my day. So my childhood and I suppose my teenage years, didn’t want to identify as a disabled person. I didn’t want to be a disabled person. It was a negative thing. And because I was excluded from the mainstream, very much excluded from the mainstream, I I went to

a special school and there are some good special schools but mine was not good, it was very focused on therapy. So I wasn’t offered the same opportunities as other people did, I 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 couldn’t and I knew that I had an inquiring mind and all of that kind of stuff.

Esi Hardy (05:30)
Mm.

Berni (05:39)
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 growing up in London, which was cool, 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, as my journey developed and 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, 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 want to be like everyone else. And of course now, because I’m a bit of an Maverick anyway, but I can see that being different is a huge, it’s great, it’s really great. But in those days I couldn’t understand that. So it wasn’t until I met other disabled people, and we struggled along, rubbed along together and were able to talk and discuss.

and debate and all of that stuff, I began to think, yeah, actually this is quite cool. So that’s why I say I’m proud to be disabled.

Esi Hardy (07:01)
I think that’s awesome. am as well. again, I’m not saying this to blow your trumpet, Berni, 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, think that’s the first time I’d been in round 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 going to crash through the middle of it. 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 too by name, but I talk about kind of.

Berni (07:34)
Yeah. Yeah.

Yeah.

Esi Hardy (07:47)
that journey to my own empowerment through meeting other people who were living it already.

Berni (07:54)
Yeah, thank you. That’s a really cool thing to say. But you see, that’s so interesting because that was so my experience. You didn’t feel it until you met Robert and I. I didn’t feel it until I met these other people. mean, it doesn’t matter now in the context of how I talk about disabled people collectively and around the social model. It doesn’t matter. But in those days, one was in a wheelchair so I could see it.

Esi Hardy (08:20)
Mm-hmm.

Berni (08:20)
see

that this person was disabled and the other person I think she walked with a stick and they were both really cool and you know philosophical and interested in and 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 around and you you talk about coming into meetings did you say that you came into meetings with me?

Esi Hardy (08:49)
Yeah, yeah,

met you in a co-production panel.

Berni (08:54)
Yeah, well, you see, it’s very interesting because to mirror, mirroring 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. I thought – No Who’s going to be at this meeting? They said other disabled people. And I was like, no, not a chance.

don’t want to go and then somebody I think it might have been a social worker she drew on side me and said you’d be really good please come I said who’s going to be there apart from these other disabled people? Head of councils going to be there Berni 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 and and I

being outspoken and got lots of ideas, I said, I can’t even remember, mean, you this was a long time ago, I was in my twenties, and I think we were talking about disabled people and driving, and I was saying things like, we need to make it easier, don’t you? You need to make driving instruction easier and all the access stuff. And I can’t remember what I said, but it pressed somebody’s buttons.

Because after the meeting, these two girls came over, these two women came over and said, not girls, women, came over and said, would you be interested in joining this organisation? And I was like, and then I sat and talked to them a more and I thought, yeah, they’re quite interesting. So I went along and they were employed.

What had happened is the local authority had got a small amount of money and they’d bid for this organisation or they’d bid on the local authority’s behalf. And I was going into a room and it was like a broom cupboard. It was 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 or twice a week 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 were kind of at school, I used to go in and help out and volunteer. And then they asked me to go to a meeting. They said, we’re going to 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 what happened.

Esi Hardy (11:01)
Mmm.

Berni (11:24)
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 right can everyone introduce themselves and I waited until near the end and everybody around the table introduced themselves in relation to their medical condition

Esi Hardy (11:30)
Yeah.

I really? Wow.

Berni (11:52)
Like, my name’s Pauline and I’ve got MS, my name’s Sid and you know all of that.

Esi Hardy (11:57)
So like as a person with cerebral palsy, this is my opinion kind of thing.

Berni (12:00)
That was their whole identity. Their whole

identity was fixed around their medical condition. And it got to me and I just said…

Esi Hardy (12:06)
Jeez.

Berni (12:08)
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 people in the organisation more and we began to develop ideas and stuff.

Esi Hardy (12:27)
My gosh, 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?

Berni (12:38)
Well, I suppose, I suppose it, I suppose.

I don’t know the answer to that. I can only surmise. 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 bits beginning to develop. But in those days, disabled people didn’t have a sense of sovereignty of who they were.

Esi Hardy (12:52)
Mm.

Berni (13:06)
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.

Esi Hardy (13:20)
I think we, you know, some ways I think, I mean, 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, 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…

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 organisation. And I’m really proud that it’s a user led organisation and we only hire disabled people and we’re a disabled person’s organisation. So it’s very important that I mention that I’m a disabled person. But twice.

somebody said, I should introduce you to blah, blah, blah. She’s wheelchair bound. And obviously that’s not what the person thinks about themselves, but 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, know, in the terminology wheelchair bound, they’re also stuck like you can.

Berni (14:29)
Yeah, yeah, yeah, but I don’t know what is that. Is that about ⁓ living in a small world? That’s about the assumptions people make actually. That’s, isn’t it?

Esi Hardy (14:39)
mean, yeah.

Yeah. I think it’s also, it is about the assumptions people make, but it’s also, 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. I mean, I went to special school as well. They’d sit around talking about the medications they were on. And even now, you know,

Sometimes I see somebody on the train, 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 conditions and the hospital visits. And it’s like, I’m going to put my headphones on now because I don’t care. But you know, I think there are us that are empowered, but I think there’s also a lot of us that are still really disempowered.

Berni (15:18)
medical appointments.

Esi Hardy (15:30)
and still think that the only thing for us is to talk about what’s wrong.

Berni (15:31)
Yeah.

Yeah, absolutely. that can just be down to personality though, can’t it? It doesn’t necessarily mean it’s down to, you know, because not everybody’s politicised, because I think it’s a political issue. So, know, not everybody wants to be on that bus. They just don’t. I suppose I came, and you came, having

Esi Hardy (15:39)
Mm.

True.

It is.

Berni (15:59)
some idea of, you must have had some idea of rights, even at an unconscious level, or wanting things to change, you know, or progress, or all of those things. I suppose I came from that, I came with that. I think, you know, maybe it’s the same with you, but I think I was a fighter. I just came as a rebel.

Esi Hardy (16:18)
Yeah.

Yeah, no, I think so. you know, rebel, I used to myself a rebel without a cause, but now I think it’s I’m rebel with a cause. But yeah, I do. think that my mum brought me up to, you know, she didn’t politicise 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.

Berni (16:27)
You’ve got a cool shirt on.

Yes.

Yes, exactly, exactly.

Yes, exactly, exactly. you see, for me, I grew up in an Irish family and both my family were politically aware. I mean, just as you say, it was in their behaviour, it was in the conversations, it was in the reading that they did, the newspapers that they read.

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, you know. And you know, Vietnam was going on, Black Power was going on.

Esi Hardy (17:16)
Yeah.

Berni (17:24)
all of that really good stuff. People were beginning to stand up and shout and Greenham Common and all of those environmental change movements were happening all around you. So I think all of that was very fertile and a good time. It was great time to grow up.

Esi Hardy (17:45)
I’m guessing that you didn’t have to search very far to find like-minded people really.

Berni (17:50)
No, no, no, no, and not just like-minded people, well maybe in terms of disabled people. I didn’t have any like-minded people in terms of disabled people, but my, you know, my best friend, I think her family were very involved in being aware of the struggle. They were a Jamaican family and they were very aware of the struggle that was going on.

and know, yeah, it was just that kind of time really. I mean, I’m not aware of being reading or, I don’t know, it’s a funny thing, I can’t really.

Esi Hardy (18:21)
So you’re

But 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 that that kind of excitement and that energy is all around you all the time. Yeah.

Berni (18:39)
Yes, yes, yes. It’s all around you. It’s in the music,

it’s culture, it’s in the music, it’s in everything around you. mean, you you’d walk down the street and you’d hear Bob Marley or you’d walk down the street and you’d hear Marvin Gaye or an Irish music as well because it was a very difficult time in Ireland’s history as well, you know, around…

Esi Hardy (19:02)
Okay.

Berni (19:05)
the struggles that was going on in the North of Ireland. And of course that was very much talked about at home. So whether somehow that gets into your psyche or as you say through behavior, through the food you eat, through the people that you mix with.

I just knew that there had to be a better world, not just for me, but for all disadvantaged people.

Esi Hardy (19:26)
So we went out for, and we are going to get back to your kind of story. We went out for lunch a few weeks ago and we were in a restaurant and the ⁓ waitress was quite rude to me. And you saw that I was upset 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. 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, you said, the way they live our lives. So the way they live our lives. And the point I want to make just now is that in that moment, and again, this kind of seems like a blowing Berni’s trumpet episode, but in that moment, it helped me feel better.

Berni (19:58)
Yeah, I know what you’re gonna say.

Yeah.

Esi Hardy (20:18)
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 in everything that everybody’s doing and saying. And so it kind of…

It must have felt in some way a little bit comforting as well.

Berni (20:47)
I think it started to feel comforting when I met with other, when I started to meet with other disabled people. mean, this bit that I’m talking about now was when I was a teenager. And as you say, it was everywhere and it was exciting, but I didn’t really understand. I didn’t really know how to articulate that, what to do about it. I just found it exciting. I mean, I remember watching the Vietnam War on TV.

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. you know, my family and my best friend, I had two best friends. One was from Mauritius and one was from Jamaica.

Esi Hardy (21:23)
Mmm.

Berni (21:34)
And the one from Jamaica, they weren’t that well off, but I was amazed how rich and a life of value it was, you know, because they do these things like if they didn’t have, they’d have these parties with these great big speakers and they’d invite everybody in and then to pay the gas bill, they’d sell the food and…

and they’d have DJs in there and all of that stuff. And I was always invited. And I just felt so privileged to be part of that. And so the different ways that people respond to the barriers that they face in life and how they overcome that. 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 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 fun. And I began to see, it’s not all about misery. 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 around that time I met my husband and he was very, he was quite alternative.

And then what happened? Then I had children. then 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 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, the whole thing for me with that was, I’m normal.

Esi Hardy (23:01)
because he had nothing else to do.

Mm.

Berni (23:19)
This is a move towards normality. Which isn’t always the best way to plan a family. Which isn’t the best way to plan a family. But it was a step. It was a step on my journey, think, of me taking control of who I am and what I want out of life. And I’m not going to have this. And then I met these other people and it was like a magnet.

I was listening to them talking about their experience and other people talking about their experience as well. The net began to widen and then this movement, this idea began to spread throughout. It 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 payment started.

Esi Hardy (24:11)
Mm hmm. Mm hmm. Yeah.

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

Berni (24:29)
Yeah.

today, yeah. I mean it wasn’t just me. What I’d say is 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, some of my ideas and then I went to this other meeting and 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.

Esi Hardy (24:36)
I know that.

Berni (24:59)
agendas and we’d chat on the phone and we’d chat on the phone about ideas and about you know what we felt the committee needed to discuss and I can’t remember how it happened but the local authority that I was living in this was way before direct payment so the local authority that I’d live in got some money and wanted to develop a centre for independent living

which started out with very good ideas. So I began to work with that project and what we did was we put together a list of… We just brainstormed what were the things we felt we needed to change. The things that come, not just from our point of view, but the things that had come up at the group meetings and stuff.

and we had this conference where we had workshops on education, employment, benefits.

money or something like that. And we put people into 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 basis for the centre. But unfortunately that centre, in my opinion, started out with very good intentions but didn’t continue. But at the same time…

The organisation that I was originally involved in, you know, the one that I said was in the broom cupboard. It was so quaint 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’ve only had temporary funding. So that went.

Esi Hardy (26:26)
Mm-hmm.

Berni (26:46)
But another organisation called another organisation, 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, we were, know, things like consulting the local authority would send us information and we would consult on small bits and pieces, a bit like the PEP was doing.

Esi Hardy (27:09)
Mm-hmm.

Berni (27:10)
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 was going 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.

Esi Hardy (27:12)
Hmm.

Yeah.

Berni (27:36)
and I stayed there for maybe five years and then I got another job and that was the beginning of my professional career. And then I 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 met some really wonderful people and learned a lot.

But between going to Southampton Centre for Independent Living, was managing as day centre because I was thinking I could change the world, you know, on my own. But that became a bit, I 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, 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 working training social workers in disability equality training, which I’d kind of learned. I’d also had my own, I’d also been trained as a trainer by other disabled people that came from Southampton. And before I went there and another woman.

Esi Hardy (28:28)
Mmm.

Berni (28:48)
So by this time, kind of the networks were beginning to spread and people were beginning to question what they actually needed to themselves as leaders and how they could then use those skills that they gained, how they could pass those skills down to other disabled people. So there was like a system where you were constantly mentoring, constantly passing down

Esi Hardy (28:52)
Mm.

Berni (29:15)
to the grassroots all the time.

Esi Hardy (29:17)
Do you think that’s what’s missing at the moment from, from how the movement has become so segmented and lost? There’s not that peer support and that peer learning.

Berni (29:24)
Yeah, I think it’s…

Most definitely. 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 going to 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 going to go and you’re going to 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 all the, all the centres for independent living, which who, you know, had right on disabled people had a, like an umbrella organisation and they would meet together.

to network, to learn from each other continually and I think that could be why we’ve got the fragmentation that we’ve got now. Plus most of it is online and online is fantastic, mean don’t get me wrong it sets so many people free but it’s not the same, it’s not the same. I don’t know what it is about it but it’s not the same as meeting somebody physically for a coffee.

Esi Hardy (30:27)
Yeah. ⁓

But it’s not the same. Yeah.

Mm.

Berni (30:46)
and the

problem is you can’t always, when you’re developing these things, these great ideas, these changes, they happen organically when like-minded people come together and I don’t think you can always say let’s have an agenda we’re going to talk about this, you just get people together that want to bring about change and you just talk about how

going to change the world and what needs to change and little shoots come from that and you can’t do that online.

Esi Hardy (31:12)
Mm.

Yeah, no, can’t like, we’re going to put you into a breakout room now because you can’t shout across a Zoom space to talk to somebody on the other side of the room.

Berni (31:18)
Yeah, you can’t just do it online.

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

Esi Hardy (31:26)
Yeah,

yeah. And also it’s that experience of getting into the room as well. Before lockdown, CD 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. 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, 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.

Berni (32:32)
Yeah,

I hadn’t thought of that. Yeah, you know, the coffee and the chat and the preliminary stuff.

Esi Hardy (32:38)
Yeah, and god, this guy just

didn’t open the door for me or my god, I fell off the curb or maybe that’s just my experience. Yeah, I fall off the curb wherever I go. But yeah.

Berni (32:45)
Yeah, yeah, yeah.

And I think what’s often underestimated for people in our community is, you know, for me, one of the huge barriers is IT, okay? So on the neurodivergent side 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. But they haven’t got support 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, coming to the forum with all this

Esi Hardy (33:19)
Yeah. Yeah.

Berni (33:34)
in my head and I’ve got to bring that down before I begin. And the same argument I think exists if you’re coming 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.

Esi Hardy (33:38)
Yeah.

Yeah.

Berni (34:03)
to do what the average Joe does. I don’t want to be an average Joe. So I worked so much harder to make that happen and often that isn’t recognised. So in some ways IT is accessible to us but in other ways it isn’t.

Esi Hardy (34:07)
Mm-hmm.

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, 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 just compounded exclusion even more.

Berni (34:53)
Yeah, yeah, chat, B, chat, G, B, D. 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 going to leave, I’m going to, you know, that’s just more overwhelming. I don’t want to just focus on me. Let’s just say people like me.

Esi Hardy (35:13)
Yeah.

Berni (35:13)
You know,

as you say, it’s a huge, it’s a 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, to have a, to pay for chat GPT every month. Well, no.

Esi Hardy (35:27)
And that’s not saying that these, we’re not saying that these technologies aren’t helpful, but they’re not helpful in isolation. can’t just, as you’re saying, can’t just give somebody the tool and say, off you go. It’s about helping people. Same but different.

Berni (35:34)
No. No. No. No.

Esi Hardy (35:40)
I remember a blind person telling me a story about a reasonable adjustment. So 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? said, 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. Yeah. 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. I know.

Berni (36:15)
Wow, the way they live our life. That’s I’m going to say.

Esi Hardy (36:20)
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.

Berni (36:30)
Yeah and it’s about I mean we know companies are under – we know money is 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 going to make this person’s day just a little bit easier.

Esi Hardy (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 able to do it themselves.

Berni (37:08)
No,

And equally that applies to us as well. Because you know, we must understand everybody can contribute. It just makes the world go round. It’s just makes, it’s not always about the great expression. Sometimes it’s about something gentle and something simple.

Esi Hardy (37:13)
Mm-mm.

Just a general

connection. I think it was a few years, I ⁓ Mick Scarlett talking, and he’s a disability ⁓ activist as well, about pre…

Berni (37:35)
Mm.

Esi Hardy (37:38)
Pre-DDA, so Pre-Disability Discrimination Act, and then post Equality Act 2010. And what he was saying is pre-1995, when the DDA, the Disability Discrimination Act, came into place, things weren’t perfect, but it felt a lot more inclusive from his perspective, because he would rock up at, let’s say, a club, and there’d be three steps.

Berni (37:44)
Yeah.

Esi Hardy (38:03)
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, 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 was like, not you again, but in like a really friendly way and carry us in our electric wheelchairs up the stairs. And then,

guard me while I was adamant that I was going to dance on the table and there was no, no you can’t do that, that’s dangerous. 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 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

Berni (38:37)
Yeah.

Yeah, definitely.

Esi Hardy (38:55)
and the human connection.

Berni (38:57)
Yeah, yeah it does and it puts people off I think. People think you know I’ve got to get it, it’s difficult isn’t it? It’s difficult just trying to be accepting of each other and but 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 yeah I can relate to that as well.

Esi Hardy (39:14)
Mm. Mm. Mm.

There

are great things that have come out of the DDA. ⁓

Berni (39:23)
Well, I’m not, no, I mean, was in, yeah, I know,

the Equality Act and the DDA were groundbreaking for their time and, you know, to be celebrated. But yeah, it’s an interesting point of view.

Esi Hardy (39:33)
Yeah.

It’s, remember back in the nineties, so I was born in the eighties. So back in the nineties, my first, and I didn’t even think of it as a negative experience at the time, but thinking back, was like, my God, that was awful. My first experiences of using a train was sitting in that guards wagon because there was no, either way people listening to this episode thinking, well, what do mean?

Berni (39:56)
Thank

Esi Hardy (40:00)
But you know, there were no spaces for disabled people to sit comfortably on trains. 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, was awful, wasn’t it?

Berni (40:05)
No.

Yeah it was really awful but having said that I remember the first time I went on the train on my own, 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 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 what I was doing and I just 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, I remember saying that to Robert and he said yeah you felt the same and it and yeah just to be included that’s what 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 used the train on your own.

Esi Hardy (40:47)
Mm.

Mm. Mm.

Yeah. Yeah.

Yes.

Berni (41:09)
But I

don’t know, there was something about being together with other, being part of the bigger picture.

Esi Hardy (41:14)
And I, yeah, no, I agree. mean,

you know, different times for the both of us. but I do agree that, you know, the first, 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.

Berni (41:27)
Yeah.

Ha!

Esi Hardy (41:41)
I only dreamt of being, but then on top of that, excitement of just being treated like another student. Because the drama school I went to had a course designed for disabled artists. And it was run by a disabled activist ⁓ called Mandy Moore. And she was a blind lady.

Berni (41:55)
Wow.

Esi Hardy (41:58)
And so because they were used to having disabled people 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. 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, 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.

Berni (42:26)
Just know.

Yeah, lovely.

Esi Hardy (42:36)
And as you say,

it’s normal, but for us it wasn’t normal.

Berni (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 as well. Because you come to accept and I think the more you accept, the more you put up with, you know, the smaller you become, the smaller you become. Yeah.

Esi Hardy (42:50)
Yeah, yeah, yeah.

Mm.

Yeah, absolutely.

Berni (43:03)
begin to accept less and less and you lose sense of who you are. And you know, as I said, you you’ve got a right to stand in your power and be who you are. And that’s, think, what what young people need to learn, need to know.

Esi Hardy (43:16)
So, 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, talk a little bit about how your experiences that we’ve talked about so far, if they at all, impact the art that you do today.

Berni (43:25)
Yeah, yeah, I can’t remember.

That’s really interesting that you should mention that. So attend an art group on a monthly basis. I’m now an ambassador for a great organisation called Outside In. And Outside In exists to support creative artists, well, it is artists,

that experience barriers to the mainstream. the term Outside In is, 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 you’re an outside artist or there’s other terms, raw artists, folk art, other stuff. And

if you hadn’t attended art college. Okay? So I attend this art group on a monthly basis where I’ve learned so much from other artists and I’ve made some great friends. 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 just thought, I’m just doing this exercise just to do it, if you know what I mean, just take up the opportunity. And my art was selected to be at Christie’s.

So I submitted my work and had it was submitted. It was a Christie’s for maybe two weeks and it was also in a gallery in the Midlands.

Esi Hardy (45:06)
and the statistics of mistakes from the two incidents in the second in a family of victims.

Berni (45:12)
So I’m a mixed media artist, by that means that I use lots of different mediums, so, you know, different paints, pastels, pens, anything goes down on the paper. 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 around the school and I opened a door and it was an art room. Huge art room and it had everything in it, like everything, 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 come in there? Can I really? Can I go in there 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, really excited. Three weeks later, I discovered that they got rid of the art room. They got rid of the art room and turned it into a physiotherapy unit.

Esi Hardy (46:29)
No.

my god.

Berni (46:34)
Yeah, and 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 at the same time too.

Esi Hardy (46:46)
⁓

That’s medical model in practice, isn’t it?

Berni (46:50)
Yeah

and I was so broken-hearted. I was just so sad because you know I was like 12, 11, 12 and I knew that I wanted, I didn’t know how, I didn’t know but I knew there was something about art that I loved. So when I started with Outside In I had no experience, none whatsoever. You know I’d say things like I drew this picture but it was absolutely rubbish and I binned it.

Esi Hardy (46:58)
Yeah.

Berni (47:14)
And the teacher was saying, talk about your art like that, Which is right, which is correct. I’d say the same to a new person coming up now. I’m still a new person coming up. Yeah, so I do mixed media art. But more recently, I’ve done something yesterday and it’s all very abstract, what I do. And I thought, know, I’ve been thinking throughout this whole process.

Esi Hardy (47:19)
Thank you.

Berni (47:37)
I want to try and find a way of representing my experience as a disabled person in my heart.

Esi Hardy (47:41)
Mmm.

Berni (47:44)
And it’s just starting to, I think there’s very small beginnings, but I don’t want to say too much about that because it doesn’t happen.

Esi Hardy (47:53)
Can you talk about how you think that your experiences as a disabled person politically and otherwise have contributed to kind of the art that you do? Or influenced?

Berni (48:05)
think it’s interesting that the art I’m into is very layered. There’s lots of layers to it. There seems to be lots of… by that I mean depth.

Esi Hardy (48:09)
Mm-hmm.

Berni (48:13)
That’s, I mean, the piece of art that I, actually the piece of art that I submitted to the exhibition was about neurodiversity. And I didn’t realize it until after it, until about, I just did it. And.

I didn’t realise what it was about. I woke up in the middle of the night and had this epiphany that it was, this is a piece of art that you’re going to submit and did you know this piece of art was about your neurodiverse 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 quirky person in a wheelchair seemed to emerge.

They’ve…

such a difficult question to answer. 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 opened my eyes to different opportunities. I’ve met great people. I always try and listen to other point, you know, although I have ideas, I like to listen to others.

Esi Hardy (48:52)
Well, I might have been.

Berni (49:13)
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 traveled 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 those other people, they’ve showed me the way. They’ve showed me the way. I mean, 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 experience were different than mine. And that’s tested my thinking and challenged me and helped me to kind of find ways around 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, that 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 I mean difference in everything. I mean, the current debate is horrid. Some of the stuff that’s going, it’s not even debate, it’s not even, it’s single-minded thinking from coming from the wrong places is quite frightening and I try not to listen to it.

But we always have to think out of the box. And they taught me all of that. I I came with the capacity to be able to do that. But they helped me to develop who I am. And that’s where I am today. I still keep in touch. I’m a reluctant follower of politics. I try and minimize 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 some of the attitudes and our minded thinking and bigotry that we’re hearing, you know, but we’ve got to, we 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.

Esi Hardy (51:03)
Mm-hmm.

Berni (51:24)
as the pattern, they are the pattern. They can show us and we have to be open to that. That’s what the movement has given me.

Esi Hardy (51:32)
We have two groups of listeners to this podcast. One group are disabled people themselves. And another group are leaders within companies, ⁓ leading on equality and inclusion in their businesses and influencing not only internally, but externally as well.

Berni (51:42)
Mm-hmm.

Yeah.

Esi Hardy (51:52)
Um,

So not asking you a big question or anything, but if there was anything you would say to people to either develop community, continue the movement and continue kind of keep the faith, what would it be?

Berni (52:08)
I think that the being human thing and putting yourself in another shoes is really quite significant in as many things as possible. And avoid tokenism. I mean, putting a box on a table, maybe for somebody that doesn’t even can’t see the box, I’m assuming, maybe can’t open the box, can’t set the system up without…

Esi Hardy (52:25)
Mm-hmm.

Berni (52:30)
The organizations and projects that 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 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, 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 some that 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 you in your thinking and co-produce that essential, essential stuff with the people that you’re hoping to offer that to. I remember years ago I was successful in getting 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 first, that would be my first one. If you’ve got a little bit of money, think about what you can do and think about who you’re to do it with, but co-produce it.

Esi Hardy (54:29)
Mm-hmm.

Berni (54:29)
And the second

one I would do, whenever, always put yourself in another person’s shoes. Be human. 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 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 going to make good connections with others. That’s where I’m at.

Esi Hardy (55:03)
Brilliant, have nothing to add. We’re coming to the end of our episode today. Is there anything else you would like to share?

Berni (55:07)
Yeah. ⁓

No, think I’ve covered most things. can’t think of anything else. It’s been nice to talk about my art, thank you. Because that’s really where I’m at these days. Anybody can join Outside In. It’s open and it’s free to join if you’re an artist, you know, disabled.

person who wants to move forward with your arm.

Esi Hardy (55:36)
or anybody from any of these marginalised communities

Berni (55:39)
Yeah, it’s not. It’s for people that experience disadvantaged communities. So it could be carers as well. It could be substance misuse. It can be any of those groups. So yeah, thanks for pointing that out.

Esi Hardy (55:56)
Amazing. Thank you so much, Berni. We will put a link to Berni’s art. Can I put a link to the art and people access your art online?

Berni (56:03)
Yeah,

they can look at my platform. Yeah.

Esi Hardy (56:07)
Okay, we will put

a link to Berni’s art and also to Outside In in the show notes as well.

Berni (56:13)
Yeah, and

just say that my platform is work in progress?

Esi Hardy (56:17)
Okay, sure. Yeah. Yeah. Yeah.

just want to say thank you so much for coming along to talk to me today on the equality edit. I’ve really enjoyed this conversation.

Berni (56:26)
Yeah, thank you!

Esi Hardy (56:28)
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. And we look forward to seeing you again for another episode really soon. Bye everyone.