If we’re lucky in life, we might find a role that makes sense to us and makes a difference to others. Our guest this month has achieved that and more. A huge music fan, especially of live music, and a disabled person who’d experienced barriers accessing gigs, Suzanne Bull MBE founded Attitude it Everything in 2000. It a charitable organisation which connects disabled people with music and live events industries, to improve access together. Suzanne tells us how it started, who helped and some of the many fantastic achievements to date.
Then, as the pandemic took hold in the UK, Suzanne was diagnosed with breast cancer. She tells us of the triple whammy of having such a diagnosis, of being a disabled woman with access needs, and it being the start of a global pandemic. Suzanne has found another passion, which she regularly blogs about. She kindly spent some time with us talking about the topic.
Links
Creative United
Someone's Survival Guide
Blog The Musings of Spu
If we’re lucky in life, we might find a role that makes sense to us and makes a difference to others. Our guest this month has achieved that and more. A huge music fan, especially of live music, and a disabled person who’d experienced barriers accessing gigs, Suzanne Bull MBE founded Attitude it Everything in 2000. It a charitable organisation which connects disabled people with music and live events industries, to improve access together. Suzanne tells us how it started, who helped and some of the many fantastic achievements to date.
Then, as the pandemic took hold in the UK, Suzanne was diagnosed with breast cancer. She tells us of the triple whammy of having such a diagnosis, of being a disabled woman with access needs, and it being the start of a global pandemic. Suzanne has found another passion, which she regularly blogs about. She kindly spent some time with us talking about the topic.
Links
Creative United
Someone's Survival Guide
Blog The Musings of Spu
Announcer 0:11
This is the The Way We Roll presented by Simon Minty and Phil Friend. You can email us at mintyandfriend@gmail.com or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn
Simon Minty 0:31
Hello, and welcome to The Way We Roll with me Simon Minty
Phil Friend 0:34
and me Phil Friend
Simon Minty 0:36
I first met our guest in the late 1990s. It was at a fashion show with disabled models. And I remember that she had a presence he was a blend of sort of authority and knowledge but being really personable as well and, and I liked her straightaway. And over the last 20 years, I've bumped into her many more times and watched from afar in admiration of her work and advocacy. So
Phil Friend 1:01
why don't we give her a name? Our guest is Suzanne bull MBE. Hello, Suzanne. Hello.
Suzanne Bull 1:08
It's so nice to be invited to the podcast it's lovely. And what a lovely introduction, Simon. Thank you for that. I think we were at the ICA with Nick Knight. Fashion photography, was it? And I've got a feeling I might have been DJing at that, I think
Simon Minty 1:33
I think yeah, right. Yeah.
Suzanne Bull 1:35
Yeah. It was a really, really long time, though. I mean, I can't believe I actually remembered it was done. But there you go.
Phil Friend 1:44
Well that is a seamless link Suzanne because obviously, what you've just told us, tells us something about the fact that you love live music, you're an expert in that area. And it's no surprise then that in 2000, you founded the Attitude is Everything group and it is a charitable organisation which connects disabled people with music and live events industries, to improve access together.
Simon Minty 2:11
Now, that's not all in late 2020 She started or sorry, Suzanne started a different sort of advocacy. Here's some words that she has written about it. "Sometimes being disabled feels like I'm scrambling around in the dirt with my hands trying to get a grip so that I can pull myself up. But now that I have breast cancer diagnosis, it's way harder. It feels like I'm at the cliff face with my legs dangling beneath me. As I tried to put one foot in front of the other."
Phil Friend 2:41
There are other notable events and achievements and we will delve into some of those as the chat goes on. But let's start with the music. Suzanne, when did the love of live music start for you? What can you remember your first gig tell us a bit about that?
Speaker 1 2:55
Well ever since I was really little kid, like I loved music. And I remember I had a pair of like tripod crutches when I was little. I don't even know if they give them to little kids. And they were like three kind of pronged crutches. And I used to use them as microphones to sing into it Top of the Pops and just drive everyone mad basically, by just standing in front of the TV screen. And then at school. I learned music and took it to I'm old school so O level. And I was always in bands as well. But I didn't go to my first gig till I was 13. And actually my mum and dad took me and it was Chas and Dave. I'm proud of that because now they like quite trendy aren't they? But yeah, my first ever gig was Chas and Dave at 13.
Phil Friend 3:54
Can you remember what music was playing in your house, then your dad and your mum? What sort of music would there have been listening to that you also had to listen to?
Speaker 1 4:04
Well I kind of quite liked their taste about eleven me and my dad went halves on parallel lines by Blondie. And I've actually got that in my record collection. And there was definitely the police. There was definitely Blondie and I did really my dad really liked Bruce Springsteen as well, and there was definitely a lot but when I was about 15 My best friend gave me a copy of the head on the door by the Cure, and that was it. But the first time I saw them play was when I was 16 and I saw them two years ago.
Simon Minty 4:49
So the I mean presumably this love was combined to make you create attitude is everything. And before we sort of get in need a bit more about What actually does Where did the name come from? Because it's such a cool name.
Speaker 1 5:02
So the name actually came from Crispin Parry, he suggested the name Attitude is Everything. And we, we came up with it, because it reflected the music industry's attitude at the time. So in 2000, actually, the music industry were very, very open to improve in access, the Disability Discrimination Act had just come out. But we noticed that they were slightly behind more public venues who already kind of like creating access. And they said, Honestly, that they didn't understand the Disability Discrimination Act. And they didn't have enough kind of like practical access that they could follow into it. So that's how we started and created what was then the charter of best practice. And we felt that the people who the first 10 venues that came on board, were the most open minded venues. And to be honest, we, we didn't bother with the people who weren't interested. Because we didn't know how long the project would be. It was a very, very part time job for me. And we were like, Why should we spend this year if all the years we've got in bank Shin, our heads on the on brick walls. But what happened was, as the project which it was a year to year project for the first eight years of its life, as it gathered more momentum, and more charter venues, and then the festivals joined, all the people that weren't interested, suddenly got interested, because suddenly their rivals had signed up. And there's a lot of rivalry, and some quite egotistical people in the music industry that you can get competitive with,
Simon Minty 6:55
which is perfect. I'm so pleased that it wasn't as soon as everything as in, you're out to bash and say, it's just the attitude, you're saying the door was open, work with the good people, and then the others get competitive. That's awesome.
Suzanne Bull 7:05
Yeah, that's, that's really how we do, I have to say that there are a lot of very, very supportive people, and open minded people that work in the music and live events, industries, and they're genuinely horrified to find out if people are having a really bad time, if they've got access barriers, whether that's audiences, artists, or people who might want to work there and they really want to kind of push the agenda forward as well. But it has gathered a lot of momentum. I mean, the first eight years of of its life, we had some really big things happen like 2005, Glastonbury, hosted the first ever stewarding programme with disabled stewards. And then in 2008, the Arts Council backed the fact that we could become our own independent charity, you know, it's very lovely thing of them to do, but arts line hosted us for all those eight years as a project. And then we separated in April 2008, we announced that we were an independent charity. And that's the first time that we got funded by the Arts Council, Arts Council England, really, and we continue to get our three, sometimes four year funding from them. And it's been a great investment. And what's happened is that each time, you know, those three and four years come along, we've we've managed amongst a really harsh climate, of funding and economics, we have managed to say, Well look, investing us because we can really change things we think for disabled people, but also we can employ a lot of disabled people as well, which is, is what we do. I mean, most of the team are disabled in some way. And most of the board are as well. So you know, that's, that's always been the case. So.
Phil Friend 8:59
So this has been going for quite a long while hasn't it? Suzanne? I mean, what have been the kind of biggest issues that you've faced, you think in terms of, I mean, I'll let you explain this. Because I mean, I'm at a different age from both of you and I do remember concerts back in. I went to the Beatles concert in 63 at Hammersmith Odeon, as it was called then. And access, you could forget it. I mean, who ever talked about, but you've been at this for a long time? What are the kinds of two or three things that have really got in the way as far as you're concerned, and still need in a sense to be addressed?
Suzanne Bull 9:36
So originally, I think there was some weird kind of opinion out there that was this really what disabled people wanted to do with their free time. And it was really odd and it was difficult to argue because of the lack of access. A few people were sort of like getting together trying to do it mainly at Reading Festival actually and There was a hardcore group of people that used to used to go. But I suppose when I was trying to access concerts and gigs, and when there was a little bit of access there, it would always be the same people. And actually, probably sometimes I was alone on the viewing platform, or I could name everyone on it. And I was just like that this isn't right. And then I also had, what really made me start. Attitude is everything was the fact that I had a couple of interesting incidents where we say there were basically accidents, music venues and festivals. And I wrote about them in what was a disability arts in London magazine at the time and in time out, and it got picked up by the contemporary music officer at Arts Council, who phoned me up in the days that you could would you like some money to do a project. And I said, Yeah, okay. So there was that there was the notion that we'll do disabled people want to do this, do they really want to come? And all that kind of patronisation. And then I think, you know, obviously, showing that the audiences were growing year on year, and that having an economic impact was really important. And then kind of I think, where they still need to understand is around performers, artists, and people who want to work in the industry, there are actually a lot a fair amount, I would say people that work in the industry, but they haven't felt comfortable in the past. If they could hide their impairments or impairment, they would. But now that people talk about mental health more and talk about neurodiversity more, people feel more able more comfortable to sort of discuss it in the workplace and be open, you know, so it's
Simon Minty 11:57
It's a good point, you're, and maybe we can come back to it, because we've talked so much about being the the festival goer, the gig goer, rather than the actual artist area. If we whizz forward today, and I, I seem to go to more gigs as an older person, older, disabled person than I did, as a younger person. And the ones when I go when they're large ones, like the O2 or Hyde Park, they're kind of a reasonably good, they know what they're doing. And they've got the provision. I'm wondering, what about either smaller gigs or festivals? I mean, how are we at the moment on that, it
Suzanne Bull 12:32
is more challenging for smaller gigs and smaller festivals, because they've got this obvious they got less of a budget, they have to be more creative with their access because of that. But with support from people like the association of independent festivals, and music, venues, trust and independent venue week, they can give them support by through their membership site, they can get them training, they can sort of like introduce them to our charter that we've made. We call it now the live event access charter. And we have one that's more tailored to be spoke to grassroots music venues. And they do what they can. And I think the people that do the best on this, understand that improving access actually improves Community Relations, and community support and improves revenue, which I have to say that smaller venues and festivals are desperate for at the moment, because so many are closing and folding per week. Many of the smaller venues as well, I've teamed up with them, the ticketing companies like dice, and other ticketing companies to offer access tickets as well. So that also makes it easier for people. And also the other thing is, quite a lot of these smaller venues are run by one or two people, which is incredible pressure for those people. But what happens is, or what people report back to us is that you more likely to get a kind of like a bespoke service. And they kind of are more attentive maybe to what you need, because they're dealing with local people and that but sometimes I feel that that perception is of disabled people that smaller venues aren't accessible, which some of them actually are. But also that they may be charged the same like massive, massive ticket price it is which they don't. And also what we try and do is is is kind of like really stressed the importance of community festivals. I mean, I am genuinely worried and lots of people on my team are about the In the pipeline of small venues, you know in smaller festivals, and because you the talent just won't be able to come through. And that's a really important thing. I wanted to give an example actually the boiler room in Guilford, who became our first small, grassroots venue, gold level, because they recognised by opening their venue at different times, like in the day, they realised that in their community, like disabled people really had nowhere to meet or go as well, they were looking at, they needed big spaces for, you know, their own events. So by opening up to them, also, they created a revenue stream, but they also created like a trusted venue, where people kind of thought we can go here, even if we're not with a big group of other disabled people, we can go here. And we'll be all right here. And I do think that's important in terms of perception as well.
Simon Minty 16:07
Because if you go during the daytime, for one reason, it means you might go back in the evening for the gig and you get this, you're also reminded me I wonder whether music seems the same as the comedy scene, which is because of the vast big venues now that people just want people, somebody's been on the Apollo or it's been on TV, and they get the big numbers, and the smaller clubs can struggle. I mean, they're still going, they are still going. And there will always be somehow new talent finds away. But it's just harder than it's ever been, perhaps. And maybe
Phil Friend 16:36
it's the, in your experiences. I mean, one of the big issues that I think we face myself and my partner, and Simon and I've talked about this is the other side of access. It's not just the getting in and being safe at the venue and stuff. It's actually booking the thing in the first place and getting the ticket. what's your what's your take on that? What what kind of issues have you come across or are working on trying to find solutions for that.
Suzanne Bull 17:05
So this ticketing issue is, is a big nightmare. And we've tried twice, to focus on it in a coordinated, dedicated way, to the extent that now, but this is one of our we've got three main focuses, and ticketing is one of them in terms of what we're going to push to the industry next, I can't give too much away. So I think in the 2014, we used to publish these biannual reports called the state of access report. And 2014, one was the first time that we focused on ticketing, you know, and the fact that two thirds of people would give up immediately, first of all, because they couldn't find the access information. And then because they couldn't book a ticket, because it was a nightmare. And then in 2018, we returned to the subject again, and we set out like, kind of like ways in which venues and festivals could work with the ticketing companies to have a fair and inclusive, accessible booking procedure. So I would say a ticket master took that on board with the number of kinds of issues that people raise with us. A very, very high percentage, if not, the majority of them are about I just couldn't book a ticket. And they people need to be able to book a ticket in variety of ways, not just on apps. And sometimes on apps, you can't actually talk to someone if you really, if you don't need a wheelchair space and you need something else, then, you know, you can't talk to someone about it. So you need to backup all the ways in which people can contact you.
Phil Friend 18:49
We did. As you know, I'm Chair of the Research Institute, for disabled consumers we did a bit of work with Which which we published, which as I'm sure you've seen, we've concentrated very much around ticketing and allocation of spaces and that kind of thing. And what you're saying resonates we had 700 panel members respond to the surveys. And it was it was pretty damning, actually about how difficult it was to access certain websites or whatever it was, but anyway, but it's good to know that you're focusing on that now or have been for a long time. It's frightened the life out of me, Simon and I have been here before, which is this idea that you work on something like in 2014 You think you've nailed it down, people leave and suddenly you've got to start again. You know, where does this get embedded? How do you embed this stuff so that you when people leave, it doesn't matter we carry on doing it that way. So
Suzanne Bull 19:42
the trick of it is to get people like Star to back it which they have done and back to sort of the time and try and so star or the Society of ticket agents and retailers and and also I have to make reference to mine, Nimbus, Martin Austin from Nimbus, rather, who runs the access card, because I think what he's done is amazing. And he's, you know, he's got a lot of people to, you know, kind of take and accept the card, which is easier if if you're a disabled person, because then you don't have to send 10 million document pieces of documentation off, just to prove that you're disabled, it's all loaded onto that access card with your number. And I just think it's just think it's great. So if we
Simon Minty 20:39
were to give you a magic wand, and you could wave it about and make one single big change in terms of music and gigs better, what would it be? I know, that's an impossible question. But what might it be?
Suzanne Bull 20:53
Well, it's still the vision that I originally have, and continue attitude is everything. It is that disabled people can go wherever they want to go to whatever gig they want festival, with ease, with no worries, or anxieties. Not only that disabled artists can perform at those venues and festivals, if people want to just have some fun and volunteer, an event or a festival or a gig they can. Or if people want to work and maintain a career in the music and live event industries, they can do that. Originally, I wanted to be a music journalist. But for various means I couldn't.
Simon Minty 21:37
I wondered I thought was gonna be music journalist or musician yourself. I mean, can you sing,
Suzanne Bull 21:43
I'm an absolutely terrible musician. I've got a terrible voice, I'd love to say, Yeah, I'd really love to sing. But I'm awful. To the point where everyone goes, Just please don't sing. The thing is with the music, I mean, it I I've been in a couple of bands that I've really liked. And I was in those two bands at the same time. And the the, actually that I played the smaller instruments in the drum in band, because I could the Congress that it's just too hard for, for me and my balance, and that I could really do. And I enjoyed that. And I think it's because there was a bigger group of us, but in the all female punk when there were four of us. And I played keyboards quite badly, really. And I just think that all of the time the stage fright get to me. And that's actually, you know, compacted with the, you know, all those access barriers as well, because, you know, the, the lead singer on the the, my friend, he's one of my best friends that that put the band together, Mel Dawkins, she's hearing impaired. So sometimes we'd go to gigs. And you know, she'd want the sound in a certain way. And some sometimes like the bass of the drums to be really turned up so she could follow what was going on. And you'd get the sound engineers that was just like, Oh, you're just women, you don't know what I'm talking about. And then she was in the position where she was forced to kind of say, Look, this is the reason why I need this. And then there was even more scorn poured upon us all. And it just used to just be tape put me off. It did put, I just thought I don't need to put myself through this. Thank
Announcer 23:25
Youre listening to the way we roll with Simon minty. And Phil friend. If you enjoy the show, don't forget to subscribe, rate and share.
Phil Friend 23:32
Maybe it's the right point now to talk about what you was exercising using a lot of your time now really, which is the diagnosis you shared with us that you'd had breast cancer and and obviously, that's now the campaign or in you is now working on a slightly different project. So we'll start with that. Tell us a bit about how that came about what you're doing in that space.
Suzanne Bull 23:54
Yeah. So how lucky am I that in the middle of the world pandemic, I get diagnosed with breast cancer. So, four days before Britain locked down. I was already told to lock down and I and I was told that I had breast cancer. And you know, it's a minefield really because you know, I was part of the breast cancer history unit at Charing Cross for many years because my mum died of breast cancer and my sister had breast cancer as well. But I was at the age where they felt that in terms of hereditary staff, I would be okay. So although still going to the annual mammogram which in itself is very hard as a wheelchair user, I have to say, but it was actually found on a routine mammogram. And this time, it was very strange because in the months leading up to it, I actually I felt quite unwell. Like, and I was also partying a lot more drinking a lot more thinking something's gonna happen, something big is gonna happen. And then I saw Mike Matthews talking on Lorraine, you know, one of those morning TV shows, and she listed out she you know, she created lots of things and resources around the menopause. So I just thought, you know, I'm gonna talk very freely about this because people still don't. And so I looked at all of those symptoms, and I was like, blimey, I've got like, 99% of those, oh, it's my, this is what this is a menopause. It wasn't, it actually was extremely positive breast cancer. So when they called me back, and they, they weren't really sort of saying that much to me. And I could see that the atmosphere in the room had changed. And people weren't really communicating. And then obviously, I went for the biopsy at the same time. And the radio said, Oh, I see something, your lymph node, and I completely freaked out. And she said to me, most people don't freak out what? You know why you let me stop and just talk to you for a minute. And I was like, Oh, my God, my mom and my sister. And she was like, Look, wait, breast cancer treatment is very, very different. Now. It will be different from from what your sister had, and it depends is very personalised depends on the type of breast cancer. And then I remember having this extraordinary conversation with a breast cancer nurse saying she was sort of going so if it does turn out that it is breast cancer. What what do you want to do? Do you want to treat it? Do you want us to go full ahead with things? And I'm like, does everyone get this conversation? I'm not sure. So I immediately went into were you just signed up? Because I'm disabled? Well, no, my life's brilliant. And yeah, of course, I'm gonna get all the treatment and whatever. So yeah, I didn't tell hardly any people at that stage, just people who needed to know on the basis. And yeah, the next appointment was with the consultant who said, yeah, you've got stage one breast cancer. I think it's going to be straightforward. You get assigned a breast cancer nurse, and lovely Orla, she's amazing. And she talked me through it, like everything and and then. And then the phone call came. That said, We're cancelling your operation. And that was like, What are you doing? Yeah, because we got to cancel the operation. Because the pandemic is hitting, we haven't got enough ventilators, you've got a DNR DNR placed upon you. Because you're disabled, you're not likely to be someone who could survive this. And I'm really, really sorry. And now I've got to go because I've got 30 more calls to make. But I do think even with this delay, we are hoping and feel it's possible for a similar outcome. Some other people won't be so lucky, but I just totally lost it. And for 10 days afterwards, everyday, I find them opposite. If you're doing this to me Give me to motivate give me tamoxifen. On the 10th day a volunteer came around with some tamoxifen. And their own was they were always on the end of the phone. There I was for four months waiting, waiting, waiting, waiting. But there's upside to this, because what I could do was used the project management skills that I had to connect all the various medics that I had, they could talk about how to safely put me under the anaesthetic with Brompton, what treatment would really work with someone with my impairment, and how easy that was going to be. And I had like people, I could just email all of the consultants and say, Look, this is happening in one group. And
Simon Minty 28:47
I jump in just for a minute. So there's so much going on there. And I just want to ask a few questions because it's something I'm not clear about what you mentioned the drug there. What was that that to Missouri? Something's a Moxie
Suzanne Bull 28:55
fan. It is a can't ever say this, but it's something like ama rotos inhibitor. And it's to shut down the oestrogen in your body. Right?
Simon Minty 29:06
And so your point was, you got this diagnosis four days ago, then there's this weird question like, do you want treatment or not? And you're like, Where's that coming from? And then lockdown happened and they said, We're going to bump you back, because we're not doing anything or presumably we're doing stage boards or states reason. And but they also said you've got a DNR you had an egregious DNR as well, it's no
Suzanne Bull 29:30
no, but lots of people found out that they got placed on them during COVID. Actually they I don't think they were doing very many operations at all. We found a
Simon Minty 29:40
We know for a fact that people did have DNRs put on but I don't think I've not spoken to someone directly who said it as you've said, and I'm like, That is terrifying. Yeah,
Suzanne Bull 29:51
it was. But me being me. I was consumed with anger.
Simon Minty 29:56
But if you hadn't found out about it, that's my point. You Yeah, I know,
Phil Friend 30:02
a lot of people who didn't find out, particularly those in old people's homes care homes, where it was quite clear that nobody was going to fight to save them. But you're a much younger person, aren't you? I mean, you've got your whole life ahead of you. And that Well, I'm very rarely speechless. But this is one of those occasions. It's unbelievable.
Simon Minty 30:23
How do you how do you pick this, Suzanne? And essentially, it's really hard for us to be critical of the NHS, because we know of all the strains and stresses, and then you're throwing in a lockdown and go with? So this whole world was different. But I mean, do you feel that you were initially like they're annoying?
Suzanne Bull 30:42
About this? No, I felt that they had my best interests at heart. Because really, what they were saying to me was, if you caught COVID, the information that we have, Brompton, your lung specialist, is that you wouldn't survive. Right? So we're trying to protect you from catching COVID in the first place, which
Simon Minty 31:05
is one of those unbelievably weird situation? Are they saying? Do you want to stick with the cancer for another four months? Or do you want to challenge COVID? That we don't understand? I mean, I can see now they were, neither was a good choice, was
Suzanne Bull 31:17
it? No, it wasn't, and they just, it was just very, was just very difficult because they didn't want to make these phone calls. I mean, you know, at the end, or said, look, I've got to go. And I understand that you're angry. But let me put it in perspective. You know, let me let me just say that I've got these 30 calls to make, and you're one of the lucky ones. So just hang on in there, which is true. That's the truth. And then the whole thing is I said to them, Look, let's just operate anyway, I bet we'll be fine. I won't need a ventilator. And they will realise that we can't do that. Because if you die in what essentially is a routine operation, there'll be held to pay. Plus, if you catch COVID, you know, we could have you in the hospital. But we know that you you wouldn't be on the list for a ventilator.
Phil Friend 32:10
So Suzanne, at what point did the treatment actually then be sanctioned? And go ahead? How long after that chat with your nurse and the and then telling you they couldn't do anything at this point? How long did you then have to wait before you did have
Suzanne Bull 32:27
waited? I waited four months. But within that there were lots of discussions about what surgery I was going to have, how they were going to do the surgery, because it's not easy to put someone like me under general anaesthetic because my lungs aren't great. So they had to work all that out. So it did give us time. And also it gave me time to consider the options and do more research. Because obviously they I was aware of my impairment, and I had other medics that deal with my impairment, but all of the breast cancer team, they had not really treated people with my impairment before. So they had to work out all of this stuff, they all had to work out together. So I guess that was like the, the positive part of it. And you know, even in the middle of a pandemic, I, I'm, you know, they all reacted to every email, but more or less the same day or they phone you. If you found them, they'd find you straight back. And that's literally when they was thought I mean, most of the team, my breast cancer team were deployed to the COVID wards, you know, that they still did that. And that's why I think you can't criticise, you can't quit size for the dead. So at the end of June, the consultant said he's very old school consoles retired now and very old school guy. And he said, right, can you come in and see me safe now? Bri ng your PPE I wandered in, he said, What are you doing next Wednesday. And I said nothing. Why? You know, I'm not doing anything. It's lock down. And he said, providing there's a bed in ICU, which I can't tell until the last minute you're in to get ready. And I also already knew that in the meantime, I'd been to the breast cancer history clinic for testing at Hammersmith. And they told me that I wasn't connected to my mom or my sister had a completely different type of cancer than they say it was just coincidence. And I'm like, How does this even work? Because I just thought this is it. This is our family. We've all the women we've, you know, we've had it and I was not part of that. They obviously they can't test my mom but they feel that because my mom my sister was diagnosed in their 30s and I diagnosed at the end of my 40s That that's they think my mom my sister could be linked but they're not sure.
Simon Minty 34:56
I want to ask you a couple of questions which is there's not there's Share the book. So I'm on Survival Guide, which is real storage advice from breast cancer survivors. You contributed a piece to this. And have you had a reaction? How did they find you? And we've got to get quite tight answers if possible. Yeah.
Suzanne Bull 35:13
So Phil who put together fit Philip Olsen, he modelled with me as a volunteer model at Breast Cancer nails the show. And he modelled because he wanted to make people aware that 400 men get diagnosed with breast cancer each year. And I was at the fashion show because there was no disability representation. It's the first time they've ever had a wheelchair user in their shop. So that's how we met and Phil just asked everybody to do it. So we all sent in are stories for him and raised a lot of money, I think, through the book. She's brilliant.
Simon Minty 35:49
Anybody any feedback? Is anyone kind of always some some, you'll get a random email from someone who's read your piece? Or is that still to come?
Suzanne Bull 35:57
It's more like through the blog, I get random emails, and you find people, there's no, there's no specific groups out there for people who've got breast cancer and are disabled as well. So I just started the blog to try and help people. And that's how you find random people that way, or friends of friends to say, Oh, actually, I know someone, you know, even my surgeons, none of my medic team new people.
Phil Friend 36:22
It sounds like Suzanne, obviously, you you've had this life, and you get this diagnosis right the wrong time. And rather than just lying down and going, Oh, shit, you kind of go, let's see this as a bit of a project. So you start getting organised, you search, you do all sorts of stuff. But this is really good advice for people, isn't it because actually, however desperate the situation is, and however disempowered you feel, there is always something you can do to just have some control over what's going on. That's what I'm getting from your messages. That is when you're in the absolute pits with DNRs. All over your bloody file, you're still thinking, What can I do about this? How do I manage this? What can I do to make this and one of them, which is brilliant, is bringing medical teams together and banging their heads, you know, saying look, the COVID lot know about this and the respiratory lot know about that and the impairment lot. But you're so right, aren't you that it's so dis disjointed and fragmented. So your advice would be what to some disabled woman listening to this conversation, who's feeling absolutely gutted, that she just been told this stuff? What would be the thing you tell her to do, if she could do it,
Suzanne Bull 37:44
that you need a strong breast cancer nurse. And if they're not on your side, change and get another one, phone up breast cancer care now, they will help you I had loads of volunteers, they weren't disabled. But they could talk me through different aspects of the treatment because you need to you can hear it from your medics, but you really need to know from someone who's been through it. And you need to just write down everything that you want to ask. And don't leave until you've had all those questions answered, or you email them over. It is difficult, even if you can't do it, because it's it's energy driving, or someone else to do on your behalf.
Phil Friend 38:21
That's brilliant. It's such good advice. Because you know, even when I go to my GP, there's usually three things I want to talk about and always remember one of them. So right in stuff, particularly as complex as this was for you, particularly. Thank you. That's really helpful.
Simon Minty 38:36
I said at the top authoritative and yet plastimo says he's he's got an heiress isn't going to know you've got an MBE, you got conferred an honorary fellowship from University. I'm going to slightly I was gonna say 16 year old, but I think it's more likely 1112 13 year old music lobbying. Suzanne, I mean, how would you look back on the story so far? That's
Suzanne Bull 38:57
quite tough. It's quite a tough question. I think that I probably used to think I was a bit call even. Even in those days back, because then I was part of an experiment to send disabled people to mainstream school. So any of the schools that I went to, there was always like, five or six disabled people at any one time. And I think we were trying to create an identity. So some of us crave various identities and I just thought, yeah, I just say, yeah, yeah, I got that and try and play it down. I do tend to downplay things. Obviously, I'd be proud. Yeah, of course, because, you know, I'm a, an Essex, working class girl born to two parents who didn't have a clue that was going to arrive being disabled. And it That in itself is you know, he talked about social mobility Is, is a pint of the fee in itself really. But I think the other thing is I couldn't fit in really to any of the arts and cultural the regular staff and certainly not the music industry. So I just joined up with all the disability arts people and work for shake work for art slide, and then found a way to create something which I felt was important. I knew it was important to other people, as well, which is having a life in, in music and life events.
Phil Friend 40:33
Yeah, and the work you're doing about you talked several times during our conversation about the need to improve the employment issues for disabled people in the music industry, or performing and so on. And you're a really great example of how that can be done, isn't it? So you're not directly on the stage doing stuff, but you're making sure that people like me can get in and watch the gig. I can go along and see my favourite artists and stuff, thanks to some of the work you've been doing. So there's opportunities all over the place, if we just prepare to have a look for the mark there. You're obviously watching opportunities. You're an entrepreneur as well as everything else.
Suzanne Bull 41:08
Yeah, I guess. So. I mean, that, you know, a good friend of mine, Mo Tarawa who is actually the chair of the UK Music diversity task force, he always says opportunities or talent is everywhere. Talent, absolutely everywhere you want to look, but opportunities are not. And this is difficulties, the difficult bit, of course, because you still have, you can have all these diversity, kind of nifty, these tips and all sorts of things. But if you don't move on from that, and push the gatekeepers away and put the gates open, then it's still the same old stuff gonna roll around, rolled around, roll around, you know, and that's what's difficult.
Simon Minty 41:54
And I have two things, I have a quick thing to you, which is you are one of our greatest supporters on social media you every, every time I post you always like it. And obviously you guys liked it. We're off. We're so thank you for doing that. And but thank you more. So for being our guest. I knew there'd be a lot of stuff here and we probably haven't covered half of it. But um, thank you so much for sharing your work your life and everything. So thank you, Suzanne. Oh,
Suzanne Bull 42:24
no problem. And, you know, it's tough things that you asked me but they've got to be out in the open because I wouldn't want anyone else to go through what I went through. That's what I'm trying to try to kind of help really, but thank you so much. It's just an honour to be on the podcast. Thank you. Oh, it's
Phil Friend 42:45
been good to meet you. Suzanne. I hope we meet again and I'm sure that there will be some people listening to this who are going to take something away that's going to be really useful so whatever that is, it's been worth it hasn't it? So thank you
Suzanne Bull 42:59
definitely,
Simon Minty 43:00
just for the listener will put lots of links up for various ways to connect to Suzanne or other organisations and so on. So yeah, do have a look at the show notes
Announcer 43:16
this is The Way We Roll presented by Simon Minty and Phil Friend. You can email us at mintyandfriend@gmail.com or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn
Transcribed by https://otter.ai