The Way We Roll
A seriously funny take on life from the disability driven duo... Simon Minty and Phil Friend.
The Way We Roll
No Time to Waste: Celia Chartes-Aris on the Real Work of Change
Isn’t it great when you speak with someone and they are on your wavelength, but are also so wise that they make you think a little harder?
Our guest this month is one of these people. Celia Chartes-Aris is all about policy, research and law. Her impressive impact led to her being crowned No. 1 on the Disability Power 100 list in 2025. However, her real power lies behind the scenes, being well-connected and acting as an advisor to UK and international governments and organisations, where she advocates for the improvement of Disability equity.
Celia is still relatively young and has a lower life expectancy due to a complex health condition. Whilst she doesn’t appear in a hurry, she is working at a furious pace. We get to explore what drives her, including when she discovered what ableism was and how it became a fundamental driver for her. We delve into the difficult topics, asking whether the stigma attached to disability will ever be removed and why intersectionality is so far behind in disability advocacy. Celia also tells us how she became a campaigner to restore the Minister for Disability in the UK Government after the post was axed.
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Announcer 0:00
Phil. 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.
Simon Minty 0:31
Hello and welcome to The Way We Roll with me. Simon, Minty
Phil Friend 0:35
and me, Phil, Friend
Simon Minty 0:37
Power in the wrong hands can be very worrying.
Phil Friend 0:42
Are you referring to?
Simon Minty 0:44
Yes. Yes, I am, but we're not going to mention their names. However, in the right hands, power can be transformational. Our guest today came in at number one in the disability Power 100 earlier this year. Her name is Celia Chartre ARIS. Hello, Celia,
Celia 1:00
Hello, thank you so much for having me
Phil Friend 1:03
for our listeners. Celia is a government Special Advisor, lobbyist, researcher, policy and legal expert, advocating for the improvement of disability equity. Her work spans globally, policy and strategy development, legislative design and performance, lobbying, unit management and implementing International Disability Law.
Simon Minty 1:26
When Celia was declared number one in the power list, I happened to be sitting at a table and listened to her sort of acceptance speech, and I really liked it. Firstly, she said she is continuing the work that others have started, which is always wise with oldies around, very smart. And secondly, she said it's fundamental that disability law is in place. Without it, it is so hard. I might have paraphrased you there, Celia, but why did you emphasize this bit about law being so important?
Celia 1:58
First of all, to say I the receipt of that award was so surprising. I had no speech, nothing prepared. If you watch the kind of behind the scenes footage, you'll see me literally shaking as the numbers went down and down. I was thinking, there's definitely a mistake. So I had nothing prepared. So what came out of my mouth was very a raw emotion, and I think I was trying very hard not to cry whilst doing it. But one of the things I've always said, and why I focus on policy rather than campaigning, is campaigns build and then they die. They get forgotten about. They are only as successful as long as there's still that contingency behind them and there's still people making noise. When we look at policy and we look at law, that's there and that's solid, and that's implemented, and it's very, very hard to get rid of that noise, because it is that level of protection, it's level of awareness. It's cementing something in that can't be undone. Is there always a possibility that laws can be reverted, absolutely. But the further we move into the future, and the more aligned we become with the United Nations, internationally understanding human rights, it's now very difficult to undo those things. So that's kind of the point I was trying to make. Is it's so important that everything that we're saying has a legal background to it, so that we can hold people account we know our rights and that we are protected, because ultimately, that is one of the biggest things as a community we're missing, is protection. Yeah, do you
Phil Friend 3:29
Sorry, Simon, I'm just gonna, I'm just gonna ask Celia, perhaps, to just begin by telling me why she's doing this. You know, what gets you into this place? How did that journey happen? Not not hours on it, but just, you know, to give me a sense of and our listeners, a sense of why you're doing what you're doing now, how that came about.
Celia 3:50
So I was born with a very rare genetic abnormality, so rare, in fact, that it's not even listed on the list of rare diseases, which does cause a lot of problems, I must admit, and it's a degenerative condition, and it's a condition that is ultimately going to take my life. And I've lived on both sides of the conversation of having a non visible disability that has as I've got older, has become more and more visible. One of the biggest motivations, I love law, I love politics, always have. Knew that's what I was always going to do as I got older, the experiences and the things that started happening in my life, the more privilege of information I built around law and understanding Actually, no, this is wrong. This shouldn't be happening to people. I mean, I can't understand why it is happening to me. The older I got that kind of fuel and that passion of politics and law turned into this passion of my own lived experiences, of the awful things that were happening to me as a disabled person, like being, you know, trying to be forcefully removed from university because apparently I couldn't get extensions, or I couldn't get time off, or having job offers taken away from me as soon as I told them I was disabled, and therefore, quote, unquote. Wasn't a good fit for the team all of these things that kept happening. I was thinking to myself, I can't sit here, practice law, practice politics, and not be backing up my own community, because nobody in the generations to come should still be going through these experiences. And there's this great quote, and I can never remember exactly who it's from that always says the life of the living is the memories of those who've passed away. So effectively, what that quote is saying is that everything that those people experience should be a memory for future generations, but they're not. We're still living the same experiences because we don't have this legal protection. And that's what fires me every day is knowing I don't want people to have to go through what I've been through, because it's so unbelievably unfair and unjust.
Simon Minty 5:48
Yeah, I get that. And I mean, we've got sort of three generations here, and whenever, I mean, if I hear you just saying I got rejected my job because of this, you're like, damn it. That's what Phil and colleagues campaign for not to happen. And I sometimes what's the other one? When people sort of say, I never saw someone like myself represented on stage or screen or whatever you're thinking, hold up. That was, that was a line and it but it is getting better, and it is getting easier, but still a way to go. We can start with a bit of negative. What's been the kind of toughest, hardest setback, blockage at where are the times you really had to dig deep?
Celia 6:28
I think I've got many examples. I think one of the times that I've really had to dig deep was about five and a half, six years ago. I very, very nearly lost my life. It was, it was during the very beginning of COVID, not COVID related at all, and I went into multiple organ failure, and effectively, I was told, You're not going home. You know, this is say your goodbyes. And when I started, I was very lucky to survive and had incredible care, which I'm so fortunate for. But I came out of hospital and my life looked entirely different. So I lost the ability to eat or drink. I now have a blood infusion every single day. If I don't have it, I'm not going to survive. I'm literally being kept alive in a very, very managed way. And I kind of sat there and thought, I don't know how to do this. Now, I had passion and I had drive before, but I've lost a lot of the privileges that my body could give me, and trying to find the mental strength. And I always say this to anybody that works in the advocacy space to live it and also work. It is incredibly difficult. The things I talk about every single day. I then have to go home and experience those things as well. And I really had to dig deep to say to myself, you know, this is just further fuel. This is just a further example of why we need to help, why we need to make the community stronger, why we need to make changes. Because you're sat here right now thinking my life is even worse than it was, and it's not my fault. It's because of my disability. And it was at that moment where I thought I've really got to find some inner strength, but it was a long battle because my body just wasn't doing what I wanted it to do, and having to adjust. I'm still adjusting now, five and a half years later, but having to make that adjustment was really difficult because my life just looked so different almost overnight. But
Phil Friend 8:18
The world that you inhabit moves at a snail's pace, doesn't it? And you come over as a woman in a hurry, because, partly because of what you've said, you know, you may have less time than you should expect to have on the planet. So how do you cope with that? I mean, are you a patient person, or are you really furious about the fact that I'm taking too long to sign the form, or whatever it is
Celia 8:45
I must say, that is a massive double conversation, and I feel like it's a conversation that doesn't happen a lot with younger people who know that they have a lower life expectancy. So the expectancy for my condition is between 32 and 34 I am nearly 30, so I'm very conscious that time is ticking for me. Obviously, lots of people do live past the life expectancy, but that is kind of the mentality that we're told to adopt. But I've known that since I was a young teenager, and that goal post has kept shifting depending on physical things that go on in my life. But I definitely say that I have done things young, but people always say to me, oh my gosh, you've done so much and you're so young. I'm like, I'm not young. I'm middle aged, approaching elderly, like, in terms of my time span. I'm not a young person, but it does make me want to do things quickly and want to get things done and cram everything in. And sometimes that could be to my own detriment, because I'm not very good at kind of stopping and pausing and being like, yay. Let's celebrate. I'm always like, right? Next thing, next thing, next thing. But it's just because I have so much I want to do in a shorter time frame. But that's almost a coping mechanism for myself, because I know if I'm not busy, or if I've got too much mental space, those thoughts start to creep into my. Head more. And I want to know that even though I've had less time in the world, my impact and love and people around me have still been the same as someone who might have lived till they were 80 or 90. I just need to condense it down a bit.
Simon Minty 10:16
It does put in context that part I'm going to go to a sort of minute detail you've been active involving representation of disabled people at all levels of policy creation. What's your approach to this? How successful have you been?
Celia 10:32
How successful I've been? I've got no idea. I'd like to think I've made some kind of a difference. I think that the biggest thing that that I always say around when we talk about ableism, when we talk about discrimination, when we talk about lack of representation, so much of it is not coming from a place of conscious or active bias. It's coming from an unconscious, indirect space, particularly the people that I work with, where I've worked with politicians, where I've taken to them the fact that a couple of years ago, the United Kingdom was given literally a failure stamp by the United Nations for violating rights of disabled people. I take this to an MP, and I say, right, this is your apbg, this is your area of expertise. Can you please focus on Article Five, or whatever it would be, and they'll go, I didn't even know this was going on. I didn't even know this was happening. Or we look at some of the the transport developments we've seen in the UK. Or we look at the restoration renewal program in the Houses of Parliament. Currently we cannot have a front bench MP, so somebody who sits in the direct cabinet as a secretary of state that has a mobility difference, or is a wheelchair user or anything like that, because there's no step free access to the speakers box, to the Smash box. In my mind, I can't fathom that and how that is a possibility that that is still happening. When I take it to the restoration renewal program and said, you know, this is what's happening, we need to highlight this. They go we've never thought of that before. Thank you so much for bringing it to our attention. And I'm not saying, of course, I'm not saying all forms of discrimination are happening unconsciously, but particularly in the policy and the politics space. There is such a mentality that disabled people fit in the bracket of health and social care in the NHS, and that's where we sit, and that's our topic of conversation. The understanding that we are part of every single aspect of life and should be considered in every aspect of life is a massive privilege of information gap, and I suppose that's my tactic, is trying to fill that information gap and fill that awareness gap and understanding that we're here. And not only do I want to survive so thinking about social care and healthcare in the NHS, I also want to thrive. I want to think about my employment. I want to think about my leisure. I want to think about having fun in life, but so often from a medical model lens, people don't think of us in that sense. And suppose that's my kind of tactic, and how I go about
Phil Friend 12:49
it, it, it sounds frighteningly familiar this. When Simon and I worked together all those years ago, you'd go in and say something like you're saying, and they go, I never thought of that. So the phrase back in the 80s of Nothing about us without us, kind of came in when we were thinking along the lines you are, is there anything we can do about that? I mean, what is this? What is it that, I suppose it's the churn. Is it that people keep changing, and therefore the messages don't go with them? It's your point about memory earlier on. How do we change that? Celia, I mean,
Celia 13:24
I think so much of it is perception around disability, like whenever I talk about my story, someone that's outside the disabled community, the first thing people do is, I see it on their face. They give me sympathy, they give me empathy, or they give me pity. Those are the first three emotions that come to people's mind when they think about me as an individual. Or this word inspiring, it's got such a beautiful connotation, and it's also got such a negative connotation. Do you find an individual inspiring because they've done something in spite of their disability, and we see that all the time, or do you just find that individual inspiring because they're doing amazing stuff with their life, and they're motivated and they're happy and they're spreading love in the world. But it's just this misconception about disability that we constantly need caring for and we can't do anything on our own, and that people should feel sorry for us all the time. Of course, there is an element of recognizing that it's incredibly difficult to be disabled from a mental and a physical perspective, nobody should ignore people's pain. Nobody should ignore people's challenges that come as a consequence of their disability. But that's not the only lens that you should see me with, but I think that's the massive problem. Is this perception of disability is something that we are wrong. We should be pitied. People should feel sorry for us. I don't want people to feel sorry for me all the time. I want people to look at me and just see another human being. And that's how it is. And then when I share my story or I need that emotional connection, I know that that individual is going to give it, and there's going to be that level of understanding that isn't how you should view me as an. Individual the entire time, like, I'll be in a group of people with my friends, and people like, how you doing? Yeah, I'm good. And then they'll come to me and they go, how you doing? How are you really doing? Don't need to do it. My partner, I just have the same question as everybody else, and I think that's a massive source of the problem. Is people still see us as incapable, and that's really frustrating. And people see accessibility and adjustments as favors and giving people an advantage and positive discrimination, it's not it's just equaling the playing field, and that really drives my gears.
Simon Minty 15:35
Yeah, you're making me think about 17 questions, and I won't be very articulate. Now, occasionally someone will come to me and say, Could you do disability awareness training? They go, No, you are aware that disabled people exist. I will do equity or equality or whatever it might be so. But you're still saying there's areas in politics, I think, as you're alluding to Phil, there are still pockets where they are at base camp, or there's the new generation that don't know enough about it, I presume that we go back to your original point that law is a solution to this, because it gives you rights, and they're fixed and they're determined. I'm trying to work out my question that bit you mentioned, where that first reaction I the stigma that is still attached to disability. I can't work out how to crack it. I think we can keep educating, keep getting the laws, but there's something deep within it. And do you, I'm not saying, Do you have a solution to this, but what's your thoughts around as you say, that stigma, that thing we can't quite shake?
Celia 16:38
I and maybe this isn't what what people want to hear. But I I've done a lot of research in collaboration with Cambridge college around this perception of disability. There is an element of human psychology here where we are naturally seen as weaker, and it's species and evolutionary to pick off the weak and to eradicate the week so that we are stronger as a community and as a species. However, that is not an excuse to rely on. We are so evolved and we are so past our Neanderthal days that that mentality of thinking is something that we can crack. However, it requires collaborative effort to do so. The kind of justification is there, but it's not an excuse. We are We are big enough and we are ugly enough to know that sectioning off people as weak, quote, unquote, is utterly unacceptable. And going back to that point around law being the solution, law is the solution, as long as people are educated on the law, when you get diagnosed with your disability, or your child gets diagnosed, or whoever it may be, you don't automatically get given a handbook by a doctor to say, these are your rights. This is what you can ask for. This is what you know. This is how you're protected internationally, unless you go looking for it and you have the privilege of information, of education, that you have received education, that you can understand this information, because it's not easily digestible. The average individual doesn't know the Equality Act, and inside and out, it doesn't they don't know every article the United Nations, convention, Law and Policy only works if we're educating people about it. And a prime example I always give is, I remember when I was at university and I was asked, Do I want any accessibility adjustments? And my response in my head was, I don't actually know what I can ask for, so it's probably better to ask for nothing, and then retrospectively, I can come back and ask the question. And that's a prime example of the law. Was there to help me. I didn't know how to use it, so I couldn't take advantage of it in any way. So I think, yes, law is the answer, but that how we have to fill that informational gap about it.
Phil Friend 18:50
Yeah, can I? Can I say something perhaps that's a bit controversial, and I agree totally with what you're saying, but I think Simon and I spent the last time of our work together, the last few years of it, amongst other things, running personal development programs for disabled people. Now this was, in some ways, based on the idea that you wake up one day and you're told, You're this, you had this thing happen, and you're it. What you do then is you become what you say society expects you to become. So you absorb the victim, the pitted, the inspirational, whatever messages it is. And the personal development programs, in some ways, were about unpicking that and saying, hang on a minute. You know there's there's the you don't have to behave in these ways. You can be what you want to be. Kind of thing
Celia 19:44
Absolutely. I mean, and that's internalized ableism, isn't it?
Phil Friend 19:47
Absolutely? So it's, how do we tackle our own community? I mean, you've said very much, incredibly importantly, we should educate ourselves better about what our rights are. We can do that. You know, we've got the internet now. We can look. Stuff up. But it's this other stuff, this psychological, deeply embedded thing that I've now got polio, therefore I am a victim, therefore I do this.
Celia 20:09
You know, it's a really important question. And I think lateral ableism is also incredibly important to talk about here. So when we talk about lateral ableism, we're talking about disabled people being ableist towards other disabled people? Yes, example, disabled people telling other disabled people or you can't use that language to describe yourself. Well, hang on a minute. Why are we telling someone that they can't use certain words? It's fine if you don't want to use that, but we shouldn't be telling other people what language they should be using. Or we see a lot within our own community, and I know I've experienced it a lot, is not feeling disabled enough. I have a terminal illness like and having to justify it in my head and going just, I'm not a wheelchair user. I don't need a blue badge. And, you know, I have the privilege of information, of having studied law on this, and I still have these conversations with myself. But I think what we have to be really careful of is not in fighting within our own community. We have to focus on what is the bigger picture here. The bigger picture is not telling other disabled people that they should use the language disabled person, not person with disability, that's for them to make that decision. The bigger conversation here is as a community as a collaboration. How can we support one another? And there is the underlying comment that we can't ignore the fact that we are the most diverse community group in the world. Disability. That word doesn't actually tell you anything about me. You have no idea what my condition is. You have no idea about my experience, no nothing, but we're all collected under this one umbrella, and then you add intersection and intersectionality into that, and it's the most beautifully diverse group of people. But we have to support our own diversity and not tear each other down. And I think that is a massive key to the future. Is we need to focus on what the bigger picture is here, and not be digging around with each other.
Simon Minty 22:04
It's, I'm thinking, it's almost like we're doing the basics, but actually we're doing the essentials. And I wholeheartedly agree with you. A confession, Phil and I, before you arrived, we did our little inappropriate jokes, and we're like, wheelchair. Use it. No, it's not wheelchairs. Oh, okay, so we, you know, but I mean, I would even play that gag to you, and I think we can play with that. I do remember first getting involved in finding the disability community really difficult. They weren't welcoming. You had to kind of do 1015, years till you learn your badge and they might trust you or let you in. And I've taken the line from that film Oppenheimer, which is I didn't join the communist because I couldn't agree with everything. So you walk alongside. But what it does mean, and I think it's really important, is that we're welcoming, and I totally agree, because we we all have a position here. And every time I meet another disabled person, I want to speak to them. I want to hear from them, I want to nudge them along. I'm still doing the career development programs and to see that little moment where someone switches and go, I don't have to apologize for this. There are things that I can do. I might need support.
Phil Friend 23:09
Let me Celia, you touched on it. You touched on it, and it is. It is a kind of expansion of what you've just been saying. But I think it's worth just exploring a little bit. Is the intersectionality you've talked about us as the most diverse community on the planet, and of course, you're right about that, but we know that women come out of this worse than men. Do. You know two wheelchair users side by side, one female, one male. We know who's going to win that. How are we doing on that? How are you as a woman, if you are tackling it in that way? I mean, how are you going about dealing with it's all your fault. See, that's why I'm asking all these questions. What are you doing?
Celia 23:45
You know, not enough people ask that question, and I do answer this question with the premise of the fact that I recognize my privilege as being white, and I recognize Sure, being part of a majority religion, and being from the south of England, and being from England, being from the 14th most developed country in the world. And so I can't comment all lived experience of intersectionality, but my experiences of being a woman, of being disabled, those two layers on top of each other. I won't give the exact statistic, because I think it can be quite triggering to certain individuals. But the amount of women who've experienced sexual violence, disabled women who've experienced sexual violence is, I think it's something like, you're 60% more likely. You look at the figures around disabled violence against disabled women from their partner in their household, it's, it's abhorrent, and it's, it's very stomach jerking to read. Do I believe that enough is being done around intersectionality in disability, absolutely not. I think there's some incredible advocates out there who are and I think actually all of us are really pushing this agenda of when I speak on a panel and I'm going to talk about disability and the global space in politics, I see that panel is all six white men. I'm not going to do it. It doesn't matter if we're. All disabled that is not disabled representation. And I think that is the thing that all of us need to take a bit of responsibility for in the community, is to say, when we talk about disabled representation, we have to be careful not to fall into a cookie cutter of now we're portraying that this is what disability looks like, because sometimes, and maybe this is a controversial hot take, sometimes that is, can what we end up doing? I've been in parliamentary meetings select committees, when we're talking about accessibility of X, Y and Z, and new development that's happening, and everybody there is a wheelchair user, fantastic, but then call that meeting accessibility for wheelchair users of X, Y and Z. Don't call it disability consultation, because it's not and everybody's white and everybody's a man, I think within our in our community, we all have to get a little bit better about standing up and saying this is not adequate disabled representation, and also giving the floor to other individuals when we feel like this is not our space to take. It's not my space to take to talk about what it's like to be disabled and a black woman in England, because I'm not I can be an ally to that conversation, but that is not my stage to take, and maybe a controversial hot take. But I think we as a community, that is one of our little bit of downfalls, is we hardly ever get the stage. So when we do get the stage, we're so desperate for it, because it's a chance to have our voices. Yeah, we have to make sure we're hearing the right voices in the
Phil Friend 26:27
right but how do you counter the fairly frequent response to that, which is, hang on a minute, we've got to have a very big room, haven't we? We're going to have everybody in to be representative. I mean, how do you, how do you deal with that question that that response, because that's frequently what you get, isn't it?
Celia 26:47
Absolutely, and my my response is always, well, you've got a big room for everybody else, so why can't we have onto it?
Phil Friend 26:54
Yeah, okay, touche, I'm gonna keep quiet now. Yeah, I'll get a bigger room. I'll have Royal Albert Hall. We'll have a video. Thank you.
Simon Minty 27:03
Yeah, your hot takes are good hot takes. And I do agree with your point about because we get the platform, we grab it, and there's not enough platforms. And I I'm going to do a controversial hot take as well, which is sometimes because we're still pushing for disability specific the idea of broadening out, we know it's going to blow their mind, yeah, but I do go to events and and I'm like, there is not enough diversity within disability in that room, and it's coming,
Celia 27:35
yeah, slowly, Yeah.
Simon Minty 27:38
Very specific part you were instrumental. We believe in getting the Minister for disabled people here in the UK back in position. There was a big outright when we thought we were going to lose that role. How were you involved?
Celia 27:51
So me, in collaboration with another individual, we started the campaign and the petition. So we did actually lose our minister. There was a cabinet reshuffle under the Conservative government, and the ministerial role was taken away. The campaign that started from my office that evening, and the phone calls went round about an hour after it was announced. And within a week, we had, I think it was 65,000 signatures, which we then took to government. And I think I emailed every policy maker and sat on meetings after meetings after meetings to anybody that was listening. And eventually we got the chief whip involved. And the conversation then happened about the necessity of reinstating the role. The first thing that happened was the role was reinstated as a junior position. We then went back round two and said, Nope, this is coming back in its full ministerial power. And thankfully, it did. And then we had a general election, and the gay Labor government then took the ministerial role way again. And so the campaign started again for the third time. And now we have sir Steven Tims, which is brilliant. So yes, but that, you know, it wasn't just me. It was, how
Phil Friend 29:05
many hours a day do you work? Because you were doing that on top of, I'm assuming, you know, paying the rent and all the other stuff. How what are you a 24 hour a day person? I
Celia 29:17
am literally the worst advocate for looking after some
Phil Friend 29:21
work, life balance, yeah, forget it. Advocate.
Celia 29:25
Um, I work a lot, but it doesn't it's, I always say it doesn't feel like work, because I know that I would do this. I did do this in my spare time before I was privileged enough to be able to do this as as my job. Because it doesn't feel like work. It feels like saying what I've got to say and doing what I'm supposed to be doing. And you know, whether people believe in that or not, about life having a purpose, I genuinely believe that so many of the things that have happened in my life, which was so awful at the time and still are awful to think about, in no way am I diminishing that. Mm. I wouldn't be doing what I was doing now, it wasn't for those experiences, and it's turning my anger and my pain and my frustration at what has happened to me in my life. And I'm not going to say that I'm not angry about it, because so this word disability pride. You know, we don't have to Happy, happy that we're disabled all the time. We can feel angry about it. It's pride in my identity. It's not proud of the things that I've been through. If none of those things would have happened, or even one of those things would have been different, I wouldn't be doing what I was doing now. And actually, work is such an outlet for me to know that I'm channeling my pain into, hopefully something good. And so I work a lot because it does mentally help me? Like I can't go out for a run every day if I had a pound for every time someone said, go for a run and have a bath. But I can't do either because I've got so many tubes coming out of me that can't get wet. And if I ran, God help us, I don't get running, but it's such an outlet for me.
Simon Minty 30:56
Yeah, we, we the campaigning you did on that, and I'm sure you've done other campaigns that's phenomenal, that the speed and to get 65,000 signatures, and then to be in the right in the room with the right people, I mean, that is awesome. I imagine Phil still involved in campaigning, and I imagine you're sitting there going, how the hell did you do How did you do that? I mean, and do you, are you so well connected now? What? What were the mechanisms? I'm
Celia 31:25
very lucky that I know some incredible people, and I'm very lucky to be so well connected within the community as well. And I preface and say, oh my gosh, was this was not me on my own there. You know, there was so many people who were ringing up favors, you know, speaking to the Andrew Marr Show and and ringing LBC and saying, Can you put it on LBC? Can you put it on prime time telly? Can you get it on radio four that it was, what I loved about it so much was not one person had any viss or negative reaction. Everyone was like, yeah, what can I do? What do you need? And that was amazing. So I'm so lucky to be connected to these incredible people who can offer support in these situations. But I think it's quite obvious that I'm not a very front facing individual, like I'm not on TV. I'm not that. That's not my vibe. I'm very much behind the scenes, and that's where I like to be. I don't want it to I don't ever want it to be about me. I wanted to be about what we're doing and the people that have been involved in it, so it was incredible to so quickly be able to pull all of that together. And I wouldn't have been able to do it without everybody, but
Simon Minty 32:30
that's because for years and years and years, you must have been the consumer networker and effective and people trust you. And
Celia 32:36
networking going on for many, many years, and still, it still is going on because there's such a high turnover in you think about civil service and how many elections have we had in the last couple of years? All of this is such high turnover, and you can't keep up with it.
Simon Minty 32:51
Yeah, one of the other things Phil and I spoke about before, which we're prepping for this, was that fact that the most powerful people you genuinely don't see, there's a whole load of media power and all that kind of stuff. But you're, you're saying I don't want to be in the limelight. I'd much rather be, and I think that builds a lot of trust as well, phenomenal.
Speaker 2 33:14
So I'm like it's all I want to be is in the position where I can do the most. So whatever feels right is the decision I'll make at the time. But I know that what I can where I can make the most impact is not being the one talking that's for other people, that's other people's talents, that's other people's skills. I like to be where I can make the most impact. And I'll put myself wherever that is, but from a personal perspective, that's very much kind of behind the scenes, just getting on with it.
Announcer 33:41
This is the way we roll, presented by Simon Minty and Phil Friend,
Phil Friend 33:45
I suppose. The fact is, Celia, I'm interested in in that area, because you said several times the disabled community is enormous. You could have picked anything. Couldn't you really where rights were an issue, arts, education, housing, whatever it is you've chosen the area you're hanging out with civil servants and politicians and policy makers. How have you because that, what that says to me is, to be really effective, I must get rid of all the stuff that doesn't relate to this, and focus like a laser on what is I'm doing? How have you honed your target, in a sense, and then become so dedicated at dealing with it? Because I think for many people listening, who are companion campaigners, their problem is the landscape is too wide. The issues are so many. Where do I start? Kind of thing? Help me understand how you've arrived at this place? Really
Celia 34:47
good question, because lots of people message me, like on LinkedIn and things like that and like, I would love to do this, but I have no idea how to how to get started. So I trained in law. That's what I did. And special. In human rights and international law, because that was my area of interest, and I loved it. But from a young age, I've always wanted to be in politics and policy and law, something on that. You know, I used to stay up when I was younger and watch the the referendums, and everybody asked about, what are you doing? I'm, like, just really interested, and I love it. As soon as I could vote, it was like the best thing ever, but that's where I started. But then I started working in politics, and started working in campaigning and working with these individuals, and you start to build those connections. And I always say, but you to work in politics, you've really gotta love it. It's not nine to five, it's not Monday to Friday, and it's constant, and it's very, very, very quick. So my first piece of advice is, if you're unsure whether you like it or not, it's probably not the space for you, because you really gotta be so honed in on everything that's happening. And you don't get information in four lines in a tweet, it comes in a pack of information like that. And you know, Can you can you get through it without absolutely wanting to obituary your brain, but having that passion for it? But it is, it's connections, it's who you know, and it's understanding how the system works. You know, there's so many juicy secrets that I could say about how politics works. And when you email your MP, I'll give you a prime example when you email your MP and there's something going on with your housing or your social care, whatever it may be, it's not your MP that's writing that response. It's their case workers. The case workers then send it to the Member of Parliament, Member of Parliament then signs it off, and you get the letter back. But there is such a misconception in this country, and then again, it's privileged information gap about how politics works, if the average individual doesn't understand our political and our jurisdictions and our and our judicial systems, how on earth you're supposed to enter that space? But also civil service trying to get in that way so competitive, and as we know, disabled people tend to be picked second or third and so again, trying to get in. But my advice is, have passion and have the conversations. People will listen, but you just need to start those conversations.
Phil Friend 37:09
But you're you're what you're saying is very transferable, because one of the things that Simon and I talk to disabled people about is being an expert on yourself. That's the first thing, but then become an expert on the issue that it is you're trying to tackle. So at work, you're not getting the adjustments you need. Well, find out what the law says. You become an expert. That's very transferable, isn't it, and build networks, surround yourself with people that can make things happen and change things. I know, yeah,
Celia 37:41
when I was growing up, the word disabled was one of the most offensive things that somebody could say to me. I hated it. I was like, No, I'm sick. Please don't use that word. I hate it because I wasn't surrounded by any other disabled people. I didn't know any other disabled people, really, until I joined LinkedIn and found my community, and I was talking about disability in a space not with other disabled people, I was literally on my own going, somebody listen to me. I've got a lot to say. As soon as I found my tribe and found my community, from a mental health perspective, it absolutely changed my life, but also from an ambition perspective of trying to get things done and trying to make change and do what I want to do again, it was absolutely instrumental, because I felt so lonely for so long and like nobody understood. And although I've, you know, I don't know people with my condition and my experiences, I know a lot of other disabled people, and there is that natural, almost telepathy between us, that you don't have to say it, I get it. And just having that comfort somebody that understands and somebody that recognizes, and also somebody to flag the behavior within yourselves. And I'm having a day where I feel like being a burden, or feel like I can't do something, or I want to give up, or I can't bother anymore, because I feel like I'm not getting anywhere, and I just go into this spiral soon as I speak to another disabled person, and they just, you know, no beating around the bush. Say, pick yourself up. Come on, stop. You know, X, Y and Z, and we have that chat, nothing else needs to be said, because there's that mutual understanding. But finding your tribe changed my life, and it's the biggest piece of advice I can offer any other disabled person is find other people, whether that's online or in person, because it's so instrumental to not feel alone. Yeah,
Simon Minty 39:29
100% agree with you. I always imagine I'm trying to work out when you were born, if you're approaching 30 but 1996
Celia 39:39
the very, very end,
Simon Minty 39:41
great. Thank you.
Celia 39:42
To be specific,
Simon Minty 39:45
disability at that point probably didn't welcome you either anyway, because disabled people avoided the word sick. No, we're not sick. We don't have that because it's there was a denial of, it's fixed, it's permanent. And the reason being. Be because you think we're going to be unreliable, not give us jobs all the other things that you want to do. I think one of the successes we're not quite there yet, or intersectionality, is that combining Catherine Hale has been amazing around long term health conditions, mixing in with disability, again, we've got more in common than we have not You said that you had to sort of learn that word disability, disability and maybe accept it is that linked to unlearning ableism. With your work with David, sorry, with Jamie shields,
Celia 40:33
yes, it is so. So Jamie and I, for clarification, we're not married. Everybody thinks we're together. We're not, and we have to say at every opportunity, we're just best friends. We're both, I'm married to a man, and Jamie's engaged to a man. So I can assure you, we're not, we're not together. But people always get that wrong. I mean, our whole mission is, I didn't ever, I didn't hear the word ableism until I was about 17 years old. That in my mind now 10 years on, blows my mind that nobody taught me as a disabled child, but that is the word to use to describe the discrimination you're facing. I knew what racism was. Knew what homophobia was, I knew what sexism was. I can go on and on and on and on. I didn't know what the word ableism was. And when we go out, and we've worked with some incredible organizations like we work across the NHS and kings and all these amazing places, and we're still having conversations teaching people about what the word ableism is, and that's not, you know, to get people in trouble or to say that they've done something wrong. That, for us, is a massive signal how far we still have to come that people don't even know the word to describe, to script, they don't even know the word, and they can't put power on it, and they can't put authenticity on it and flag it in that single moment. How on earth are we supposed to advocate for ourselves? How on earth are we supposed to advocate for other people? How are we supposed to be allies? How are we supposed to build organizations that entrench accessibility, equity and inclusion, if we can't even identify the word to describe, and that's where our whole premise comes from. Is putting power on this word, not letting people forget this word, giving us the same autonomy and strength that when I say that word ableism, say, you know, that is an ableist thing to do. It instills the same fear as me saying that was sexist, that was racist, that was homophobic, because people have a visceral reaction to that word and go, Oh my gosh, I'm so sorry. I didn't mean to I would, you know, we'll do everything we can to undo it. A prime example is, is you say to an organization, you have inherent ableism within your organization. And they go, Okay, we'll make a three to five year plan. You know what? Exactly here, I don't really understand it. You say to an organization, they've got parent racism and sexism, they they will, they will hopefully sort that out immediately. And I'm not saying in any way that other movements and other communities are where they need to be, but I'm saying there is not enough power on this word. It doesn't instill the same reaction.
Simon Minty 43:05
Yeah, sorry, Phil, can I just follow up? Because you're you're ringing lots of bells. I remember a phone call about 15 years ago and someone BBC, ouch, ableism. What do we think? Or BBC access all and I, I said it will take off, but it's not there yet. Now I openly confess I don't use it very often. I'm more likely to say disability discrimination, because that's what I knew, and I know there's a sophistication. I need to read more of what you're saying, but maybe when I hear the word ableism, I'm doing exactly what you're saying, saying it doesn't pack the punch, and I hopefully that will change disability discrimination that does pack the punch for me, but I've also felt when we do ableism Well, blessed. That's the way it is, though. Yeah, it's their fault, or there's only so much you can do.
Celia 43:54
And I say on that as well, because I was exactly the same as you know I would. I studied human rights law, and I didn't even know the word it knew that word never came up, ever came up. But when you say disability discrimination, what's packing the punch? Is it the entire sentence, or is it that word discrimination that's packing the punch for you and for other people? And again, that's really important to flag. And again, we go back to what we spoke about right at the beginning. Disabled People just expect this stuff to happen to us because we think it's part of being disabled. It's part of the package, right? You know, you're unwell, you're poorly, you're sick, all of these words which get put on us, well, you've just got to accept them, that your life's going to be, you know, not as great. And what we're saying is, is okay. The experiences that I'm going to go through, physically and mentally, are going to be different, and they're really going to be hard. But can you stop making the world I live in even harder for me? Because it's not necessary to do and this is the thing that, again, blows my mind, is I think it This isn't necessary. It's not like we're trying to change the world into a bad place. We're trying to make it better. Why aren't people listening? It's not just us that benefits from accessibility. Everybody does. You know, we think about individuals with push chairs when they're a parent, accessibility benefits them. We think about elderly people, accessibility benefits them. Siri, Alexa, all these things started out as adaptive technology, but again, I get so frustrated that I have to say the sentence accessibility benefits everyone, not just disabled, because, again, I'm trying to find a reason to justify it in non disabled people's minds as to why it's a good thing. Again, I shouldn't have to say that sentence, but anybody that's in the advocacy space, that sentence is burned in our brain, and we say it all the time, but it's so frustrating that, again, we still have to say that, like we're trying to justify it to everybody. Why do I have to justify basic human rights? Accessibility is not a privilege, it's a fundamental human right and fundamental human freedom. And for some reason, I still have to justify why I need access to that, and that upsets me incredibly. Yeah, can I
Phil Friend 46:05
just sound a warning here? We've got a few minutes left. We've been we've been talking for nearly an hour already, which is unbelievably brilliant. I just thought maybe we should just focus on the future for the last few minutes and think about what that looks like for you in terms of policy change, where are the big issues that you feel the time you have left you want to concentrate on, for, you know, to make a big difference
Celia 46:35
So that there's, there's, I suppose, four things that are my four kind of top goals. One is seeing effective national disability strategies put in place by government. So thinking outside of legislation, what are we doing? What are we focusing on? What are we trying to fix? Because previously, those disability strategies, as we all know, don't need to go into it. Do we all know how we feel about those? The second one is looking at the fact that our attitude towards disability and politics in this country is a fact that we didn't even turn up for our hearing about giving, being given the ruling, the fact that we were failing fundamental human freedoms. We didn't even turn up to the hearing for it, but the United Nations, so looking at how we can better transpose the United Nations articles into British law. The third one from that being is regular and I emphasize the word regular updates, looking at our equity law and disability law, it's been 15 years since the Equality Act. Yes, we've had little amendments here and there, but it's been 30 years since the Disability Discrimination Act. In my mind, we drew an update. Sniff, sniff, where is it? I can't smell it at all, which is incredibly upsetting. The fact that we're 15 years on and we've got nothing new, United Nations has updated itself. So why can't we? And the third and the fourth and final one being that we're a global community. We're not just a community here, and for all of the horrific things that we go through in this country, we are, we do have a lot more privileges than a lot of other individuals, especially in the global south. So I have the utmost privilege of working with some incredible countries over the years, and I'd like to continue doing that, really focusing on those global south countries where they aren't at the same level of us, and sometimes we really are starting from nothing and starting from really, again this word, basic understanding of disability and getting something in place, countries where they have nothing and they have no protections, and they are not party to the United Nations. So those are kind of the four things that I'd love to do
Phil Friend 48:41
And if you let's use the desert island disc metaphor, you can only choose one. Which kind of out that four would you want to really motor on
Celia 48:54
Be the global conversation. Because, you know, it's not just me here in the UK, and it's not me just globally, either, but there are so many people here doing incredible stuff, and I'm privileged to have the platform to be able to work internationally, and I've got some incredible countries lined up already. But if as a global community, we can shift, I think it puts more pressure on us as as Britain, as the United Kingdom. If we can enhance that global pressure. I think it will do us a world of good here as disabled people.
Simon Minty 49:26
This could be a perfect place to stop, but I just want one minute on non policy, Celia, those sort of 4050, seconds a day that you have spare. What what happens when you're not doing this?
Celia 49:45
Well, I live down on the south coast. Anything to do with water, rowing, sailing, I am there. I am such a water baby, which is ironic, because I can't get wet because I've got so many tubes coming out of me, and I make it work. It's adaptive. Yes, and it doesn't look like how it looks for everybody else, but anything to do with water, and I am on it, just hearing the sea and feeling like I'm not trapped. And I know a lot of people, disabled people, get that feeling of trapped and those four walls closing in, and it's a matter of privilege to live where I do to be able to do those things, yeah, but that's what makes me happy.
Phil Friend 50:21
I can see you with a rubber duck.
Celia 50:23
I do have well, but people keep buying me Rubber Ducks because they think it's a cerakot. I think I have about 50 or 70 rubber ducks.
Phil Friend 50:32
I never knew that
Celia 50:33
all of them is getting bigger and bigger and bigger.
Simon Minty 50:39
Thank you, Celia. I suspected when I heard you do your acceptance speech speaking she would be amazing. I didn't realize how quite, how amazing it is. So we are chuffed. It's I feel honored to be part of your tribe. So thank you so much for coming on the podcast. And I don't think I'm old enough quite to say this, but it is reassuring to know that there's another generation. I hate the fact that you've got to do it. I hate that it's frustrating. I hate this I hate this repetition. But I'm just so glad you exist, and thank you for all the brilliant work that you're doing. Thank you
Celia 51:14
And like we said before we started recording, it's because of people like you that I can do what I can do, and I think our generation should never forget the sacrifices, literally, life that some people have taken so that we have a platform to be able to have these conversations. Is it better than it was? Yes, no one's denying that, but is it anywhere where it needs to be? No, and it's so sad that we're still fighting the good fight, but it is a privilege to be able to do it because of other people, and I never ever rest on that Laurel. So thank you, and thank you for having me on as well. It's been a real privilege. Thank you.
Phil Friend 51:47
Well, I think let me just briefly say to you, Celia, that I feel empowered to go away at my venerable stage in life to think about what more I could be doing now online, particularly I've retired. I don't I do campaigning, but what kind of campaigning is it? So I'm going away from this conversation thinking, get on with it. You lazy, sod and do more. But I think thank you so much. You've been very open, and you've shared a lot of stuff that I think many people will find you know themselves. They will seek great comfort from the fact that knowing you're doing what you're doing and so on. I want to use inspiring, but I won't. I'm going to say I'm in awe of you, which is slightly different, but it's been a real privilege. Thank you so much.
Announcer 52:42
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. You
Transcribed by https://otter.ai