As Ruth Madeley
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BAFTA award-winning actress Ruth Madeley joins Sinéad as the first visibly disabled guest to date. She shares how her family empowered her aspirations in the face of her spina bifida, the strange pathway that lead to her astounding theater and acting career. Ruth and Sinéad discuss in detail how accessibility in public spaces has improved, but still has a long way to go.
[00:56] Sinéad Burke: Hello. Welcome to As Me with Sinéad. It’s hard to believe, but we’re now winding our way to the midpoint of this season. Genuinely, it really does just feel like yesterday when we were choosing a show title, one which we went back and forth on, and a logo. It sounds trite and probably narcissistic, but I’m so proud of As Me and the entire concept of the show. Creating spaces for people where they can be themselves unfiltered, unperformed and just exist as they are. To show up in the room and in the world as me is one of the best feelings. And I hope that this show does that for you each week, helps you show up as you, gives you the confidence, or reminds you of the importance of it. Thanks for being with us so far.
[01:55] Sinéad Burke: But onto this week’s show. Today we have our first visibly disabled guest. And of course, you can’t see that in the same way that you can’t see my disability because this is a podcast. I am so in awe of this actress. Of her drive, her ambition, her talent, and just truly how groundbreaking even her mere existence is within the space of television. I’m confident that she’ll be the first superhero in a film who uses a wheelchair, or perhaps a director who uses a wheelchair on a $100 million-budget film. Both options if she chooses them. She’s already a superhero to many, but not because she’s a disabled person just existing, but because of who she is and the qualities and talents that she has cultivated over her life.
[02:45] Ruth Madeley: My disability doesn’t define me, but it definitely drives me. I use it as a driving force. I can use this as a tool to hopefully make the world more accessible. And that’s how I feel about it. And it’s always been part of me. And I don’t want to be sad about a part of me.
[03:02] Sinéad Burke: Are you ready for this week’s episode of As Me with Sinéad? It’s with the phenomenal Ruth Madeley. Let’s go!
[03:14] Sinéad Burke: Sitting across from me today in a studio in London for As Me with Sinéad is an extraordinary actress who in the four years of her professional career has transformed how we view disability as an audience. And not only that, has been part of writers’ rooms, has taken the helm in terms of making documentary, and is really genuinely and sincerely changing the landscape for disabled people in film and television. I am sitting across from the extraordinary Ruth Madely. Ruth, thank you so much for joining us today.
[03:45] Ruth Madeley: Thank you so much. I don’t think you understand how excited I am about this.
[03:48] Sinéad Burke: Just being in a recording studio.
[03:50] Ruth Madeley: Yeah, just that. Just that. That’s all it is. That’s it.
[03:55] Sinéad Burke: The first question I wanted to ask you is how do you describe yourself personally and professionally?
[04:01] Ruth Madeley: The way I’ve always described myself since being five years old is incredibly determined. Some may call it stubborn. I think it’s a happy mixture of both, being determined and stubborn. I very rarely took no for an answer when somebody dared insinuate that I couldn’t do something because of my disability. I think I’ve always used that as the fire inside me. To kind of push boundaries and make myself do things that other people would think that I couldn’t, I guess. So I’ve been incredibly determined since I was tiny, and that just seems to get more and more fierce as I get older.
[04:39] Sinéad Burke: And did you have a support system around you that nourished that determination?
[04:44] Ruth Madeley: I really did. I was never brought up to see myself as a victim or that — or to be fair, that I was different in a negative way. I was always — I knew I was different, but I was never taught that that was something that was negative. I grew up with an older sister who we were always treated exactly the same. We were never treated differently. We were best friends. There was nothing that my sister did that I didn’t. So that was really helpful. And I always had such a supportive and loving family who were just as stubborn and determined as I was. So it kind of just rubbed off on me.
[05:20] Sinéad Burke: Did your sister ever protect you or —
[05:23] Ruth Madeley: I never needed a big brother when I had my big sister, believe me. She scares the life out of me in a wonderful way. And everybody else. Yeah. She’s a massive reason. One of the many reasons that I am as determined, as strong as I am today. I think she’s definitely had my back since day one and she continues to.
[05:45] Sinéad Burke: Sinéad Burke: Can you remember any moments when you were a kid when that was necessary?
[05:49] Ruth Madeley: Oh, goodness me. A lad at the top of the story. I think he said something — I can’t even remember what it was. I don’t think I heard him. But he said something about my disability and she just went into this rage, complete rage. Honestly, the whole of the neighbors were like, whoa, whoa. Don’t ever say anything to upset her sister again. And yeah. That was from very, very young. We were always a unit. And that’s really nice. I was never I was never on my own, ever.
[06:16] Sinéad Burke: I think our stories are quite similar in that regard. I’m the eldest of five, so whilst my siblings were younger, none of them were disabled. But yet I had this kind of duvet of protection. But also I wasn’t allowed to revel in it either. You know, if I was “oh, I can’t reach something.” It was like, “up you go. There’s a chair and there’s a stool and there’s a ladder. You may do it. You’re not not able to do this because you a little person. You’re just lazy.”
[06:41] Ruth Madeley: Exactly. There was absolutely no room whatsoever — you couldn’t get away with anything at all. And you know, we have this wonderful — like we would take the mick out of each other, and really, really be on each other in a fun way, and just be sisters. But then as soon as we are outside, anyone dare say anything to me. And yeah, it was different.
[07:02] Sinéad Burke: Do you remember your disability being explained to you?
[07:05] Ruth Madeley: No, no, I really don’t. It was never a conversation that we sat down and spoke about it. I was always part of the conversation from day one. It was something I was always aware of. I was never, you know, hidden away from anything. I always knew everything that was going on. I was always part of that conversation. It wasn’t that, you know, don’t tell her that, don’t tell her that. Even with doctors and surgeons, I was always part of the conversation. And that grew with me because I’m naturally — I want to know everything.
[07:35] Sinéad Burke: Yeah. We were talking earlier about how we’re both deeply nosy as people.
[07:40] Ruth Madeley: It’s part of my life. I’m constantly nosy. I’m constantly wanting to know what’s going on.
[07:44] Sinéad Burke: And I’m conscious that this is an audio format. So you and I have spoke for the past however many minutes about both of us being disabled. And yet from a listener’s perspective, they have no idea what that disability looks or the impact of it might take. Tell me a little bit about your disability, if you don’t mind.
[08:01] Ruth Madeley: Sure. I was born with spina bifida, which means I use wheelchair most of the time. I do have the ability to walk. I walk around the house, but whenever I’m outside of the house, I always have my wheelchair. Also from my spina bifida I developed scoliosis, which is curvature of the spine, so I have metal rods to straighten that and yeah, that’s me.
[08:21] Sinéad Burke: Do you ever find that because you do have the physical ability to walk some distances and yet use a wheelchair, is there instances where you code-switch, or people code-switch to you? Do people treat you differently should you be in one position or the other?
[08:34] Ruth Madeley: You know something — it was funny ‘cause me and my sister actually speaking about this. Sometimes over the years you feel a little bit nervous to not use your check because people think, “oh, well, oh, oh, well, she doesn’t really need that, then!” And that was quite interesting that people —
[8:49] Sinéad Burke: Somebody called the government. She doesn’t need the blue bladge.
[8:50] Ruth Madeley: Yes. You need to strip her of her blue badge immediately. I used to overthink it in certain situations I thought, “well maybe I should just stay in my chair. It will make all the people feel uncomfortable if I start walking at this point.” So yeah, I think it has been something that I’ve been more aware of as I was growing up, but now I really couldn’t care less.
[09:11] Sinéad Burke: What changed in you to get to that sense of comfort?
[09:14] Ruth Madeley: I think age and experience. I think it gets to the point where, as you learn more about yourself as you get older and you learn more about the world, people are always going to feel uncomfortable with disability. It’s just something that’s there. And people are always like “I don’t know what to say, don’t know what to think, I don’t know what to do.” So I can’t be part of that. I have to be confident in what I want to do and what I want to say about it. I can’t be part of that hesitance, I guess.
[09:41] Sinéad Burke: Why do you think the world still is uncomfortable with disability? Why do you think it freezes people in a way that it shouldn’t?
[09:51] Ruth Madeley: I don’t know. I think it might be because there are so many different disabilities. And spina bifida manifests itself so differently in so many different people. So this you can’t look at spina bifida and say, oh, that’s spinal bifida, because it’s different in everyone. They call it the “snowflake disability” because it is always different in different people. So there is such a massive scale of how disability affects people that I think people are often frightened to offend or say the wrong thing. I think that I don’t like to believe it comes from a place of malice. I don’t. I really don’t think it does. I think people are just nervous about it and worried that they’re going to offend because it’s something quite alien to them. They’d rather just ignore it and pretend that it’s not there and not be part of the conversation.
[10:35] Sinéad Burke: I think we’ve come from a place societally where, in terms of disability, there has been always an emphasis on segregation rather inclusion. You even look at education. I don’t know what your schooling was like, but you know, we’re not that far away from people with disabilities being solely educated in a special-needs environment. And even the language surrounding that, you know, whose needs are actually special, you know, and we’re now supposed to kind of merge into this world that was never designed or considered for us. And yet we haven’t got any space within culture, within education, within even a community where these conversations are happening.
[11:10] Ruth Madeley: No, they’re not.
[11:11] Sinéad Burke: How do you even feel about the language of disability?
[11:13] Ruth Madeley: You know somethin’? Language is such an important thing. It’s such an important tool when educating people about disability. And I’m not personally one of these people who gets offended by the word disabled. I know there are people out there who don’t like the word, and that’s that’s absolutely fine. I think there are bigger fish to fry when it comes to that kind of stuff. I think teaching people about what help is needed, what changes can be made externally so that the disability doesn’t really even matter when you get to that point. I mean, I went to a mainstream school, primary school and secondary school, but I was the only wheelchair user in my primary school. And they had to build ramps here and there. My mom had to fight for that.
[11:56] Sinéad Burke: So what were the responses initially? Do you remember?
[12:00] Ruth Madeley: A lot of it’s money-oriented, I believe from what I’ve learned since. My secondary school was brilliant, they were very well-equipped access-wise to have wheelchair users, but I only had one choice of secondary school in the whole of Bolton.
[12:14] Sinéad Burke: And what’s the population of Bolton?
[12:16] Ruth Madeley: Oh, God, it’s not a massive town, but there are a lot of schools around. So I had to travel quite the opposite side of Bolton to go to my high school.
[12:26] Sinéad Burke: How many of your friends from primary school?
[12:27] Ruth Madeley: Oh, none. None. But there was one school that was fully accessible in Bolton at the time.
[12:33] Sinéad Burke: But that’s wrong to be divided from anybody who you’d build a relationship with, because the other buildings created for you.
[12:42] Ruth Madeley: There was no form of access whatsoever in in the schools closest to me. So it wasn’t like I had a choice. I was just really lucky that that school was fantastic. And I made some wonderful friends there. But, yeah, I was really thrown in at the deep end.
[12:55] Sinéad Burke: But disabled people shouldn’t have to be relying on luck.
[12:58] Ruth Madeley: No! Oh, god no.
[13:01] Sinéad Burke: It’s so wrong on our behalf in terms of that.
[13:04] Ruth Madeley: I’m very glad to say things have changed now. And access is definitely better. But yeah.
[13:11] Sinéad Burke: What changes do you notice?
[13:12] Ruth Madeley: I know that access is getting better in schools, definitely. They’re making more — putting more lifts in, more ramps. Just the simple things.
[13:21] Sinéad Burke: The legal requirements.
[13:23] Ruth Madeley: Yeah, just the things that are legally required. But at the time, it wasn’t a thing. So now I definitely notice a massive difference. But at the time, it wasn’t it definitely wasn’t a choice.
[13:35] Sinéad Burke: I wanted to go back that something you said there in terms of language. So I grew up saying “I’m just Sinéad.” And then I realized that, like you, you know, when I was going to school, I couldn’t reach the coat hook. I couldn’t reach the bathrooms. I couldn’t reach the tables and chairs. And that was when I was a student, never mind as a teacher. But when I looked at the legislation, nothing provided for accessibility for “just Sinéad.” And then I was “a person with a disability.” Because I felt like a person with a disability emphasized my humanity. And it wasn’t until it really was like in the past three years, maybe even five years, that my thinking on that has changed. Because what I was unintentionally saying was that I only want you to consider me as a person, ignore my disability. Like it’s over there on the corner. Don’t even think about it. But yet that doesn’t make sense either, because as you said very beautifully, it’s always a part of me. I’m really proud to be disabled.
[14:32] Ruth Madeley: Me, too. And I’ve had some wonderful response about how proud I am of my disability. And some people say, how can you possibly be proud to have spina bifida? It’s caused me such problems. It’s done this, this, this and this. I’m like, yes, but I can use this as a tool to hopefully make the world more accessible. And that’s how I feel about it. And it’s always been part of me. And I don’t want to be sad about a part of me.
[14:58] Sinéad Burke: No. Do you consider that a sense of responsibility?
[15:03] Ruth Madeley: Yeah, in a way, yes, I do. I think it doesn’t have to be. I’m not saying — I’m in no way, shape or form saying that all people with disabilities have to, that it’s your responsibility to do this. It’s your responsibility to make this change.
[15:16] Sinéad Burke: It’s a choice.
[15:17] Ruth Madeley: Exactly. And I think I’m not gonna be the final word on all things disabled at all. Not at all. But I do want to be able to use my position and the fantastic opportunities that I’ve been given to hopefully make this world on this, especially this industry, more accessible to young people who are gonna come into it after me.
[15:38] Sinéad Burke: Can we just take a second to just mention the fact that it is exhausting?
[15:42] Ruth Madeley: Absolutely exhausting. You upset someone no matter what you say. You can be the most positive and most —
[15:55] Sinéad Burke: You’re not feeling positive every day and and there’s this expectation that you should be!
[15:56] Ruth Madeley: No! My god! And there are days when you just feel like crap. And you’re just like, “oh, I can’t be bothered today.” And that’s fine.
[16:06] Sinéad Burke: I don’t want to be your example! Or your inspiration.
[16:09] Ruth Madeley: I am not at an inspirational stage.
[16:13] Sinéad Burke: I only have that scheduled on Wednesdays, and it’s only for 40 minutes.
[16:15] Ruth Madeley: Yeah, Wednesday morning. After I’ve had my coffee. And then after you’re not getting anything from me.
[16:22] Sinéad Burke: My inspiration is fractions. You need to find it. Email me. But it is, and yet there’s this duplicity to part of us, I think when you’re disabled. Because, you know, I wouldn’t be sitting across from you if I wasn’t disabled. Because I wouldn’t be interested in hearing other people’s stories, or amplifying them, or facilitating them. Because I grew up desperately wanting to see myself or versions of myself or people who looked like me in institutions, in the front of the classroom, in a book, on TV, in a film. And it’s like that drive to see change. But before we get to film and television, I just wanted to ask you, how did you get here today?
[16:58] Ruth Madeley: What? Transport?
[16:59] Sinéad Burke: Yes.
[17:00] Ruth Madeley: Train. So, I mean, to be fair, the Wigan station is very, very accessible. It’s fantastic.
[17:08] Where is that geographically?
[17:10] Ruth Madeley: So it’s just outside Bolton.
[17:11] Sinéad Burke: Which is where geographically?
[17:12] Ruth Madeley: Just outside Manchester,
[17:13] Sinéad Burke: Which is where geographically?
[17:15] Ruth Madeley: The north of England.
[17:16] Sinéad Burke: In the United Kingdom. Europe. Not technically the E.U, but Europe. We’ll move along now.
[17:23] Ruth Madeley: Swiftly, swiftly. Yeah, they’re great at that station. Two hours on a train and I’m here in London. So perfect.
[17:32] Sinéad Burke: Would you ever move to London?
[17:33] Ruth Madeley: No. I couldn’t imagine living in a city where I would constantly be annoyed at the lack of access and transport options. I would just — I couldn’t live my life being permanently irritated for the sake of a two hour commute. I’m good. I’ll stay where I am in Manchester.
[17:52] Sinéad Burke: We need to redesign our cities. Badly.
[17:54] Ruth Madeley: Badly.
[17:55] Sinéad Burke: Both you and I have traveled great distances. You, two hours on a train. Me, two hours on a plane. Overseas. Very tropical, a wonderful holiday jaunt. And that was the worst accent that I think I’ve ever done. But I think the exact same way. I don’t live in certain cities because they’re inaccessible, and I think when we’re talking about the point of representation in film, television, in education, it has to go beyond just the visibility piece. But what did you want to do when you were a child? Like we’ve talked about you being in school, what did you dream of doing and being?
[18:28] Ruth Madeley: When I was five or in primary school, I wanted to be a vet. And then the thought of putting animals down made me completely reassess that. So that wasn’t a thing anymore. And then I actually, in school, I wanted to go into fashion design. And then I’ve always loved writing. So by the time I got to uni, I wanted to be a writer. That’s why I wanted to do. And in my final year, I specialized in script writing, and that was always what I thought I’d go into. And it changed drastically.
[18:59] Sinéad Burke: How did you move on from the vision of being a fashion designer?
[19:03] Ruth Madeley: If I’m completely honest, the writing side of things seemed easier because the fashion world just wasn’t accessible to people like me and I felt like I would just — and this is probably me being a bit defeatist — but I just felt that I would just get so many closed doors in my face. So I thought I can do more good with my writing and hopefully change things for the better through that. And that’s genuinely how I came full circle and something completely different.
[19:32] Sinéad Burke: There’s still time for you to be a fashion designer.
[19:37] Ruth Madeley: Sign me up.
[19:38] Sinéad Burke: Creative director at pick a brand, who do you want, Ruth? Pick one.
[19:40] Ruth Madeley: Oh, my God. Oh, my word. Who shall I? I love Burberry. Burberry.
[19:44] Sinéad Burke: So we have to get rid of Riccardo Tisci.
[19:46] Ruth Madeley: Yes.
[19:47] Sinéad Burke: And you can take the helm of Burberry.
[19:49] Ruth Madeley: I’m very, very discreet. They won’t notice.
[19:51] Sinéad Burke: Oh, good. I think doing the work and being loud and having a presence and taking up space is a requirement, so we’re going to work on this for the remainder of the podcast show. But by the end, you’re ready for the Burberry job.
[20:02] Ruth Madeley: Exactly.
[20:04] Sinéad Burke: More after the break.
[21:21] Sinéad Burke: You said, you know, everything changed. What was the moment that changed everything for you?
[21:27] Ruth Madeley: In terms of my career? I finished my degree and I was doing some work for the children’s charity, Whizz-Kidz, they buy wheelchairs for disabled children. And I was also doing a placement at BBC in the script editing team, you know, learning a little bit about the different sides of the industry. And it always amazes me how many roles there are in that industry. There are so many people doing so many things to make one production. It’s insane. And I heard from a producer that they were looking for a wheelchair user for a CBBC drama. And at the time, it was very much like, just, you go because we don’t know anyone else. And there was just no other wheelchair users in the vicinity that they knew of who seemed able and in the industry. You know? “Who can we use? Right, we’ll just send Ruth.” And I went purely because I was nosy. And I thought this could be useful when I’m writing, learning how they cast things and learning a little bit about that process.
[22:29] Ruth Madeley: So I just saw it as an opportunity to learn and have a little peek around the curtain, I guess. And then I had an audition for BBC-3 drama Don’t Take My Baby. And that was the game changer. It was my first lead role. It was based on a true story. It was really, really important story about a disabled couple who get pregnant very young. And it’s about social service’s involvement of whether or not they should keep the baby.
[22:58] Sinéad Burke: In terms of their capacity?
[22:59] Ruth Madeley: Yeah.
[23:00] Sinéad Burke: What were the conversations that that show ignited?
[23:05] Ruth Madeley: It was really — one, because I felt that it was a true story. I learned a lot about the way parents with disabilities are seen in this country. And I think it’s about 11,000 cases that are dealt with every year. And that completely staggered me. I couldn’t believe it was that high. And that in itself was a massive — the whole story actually came from those statistics. And Jack Thorne tells the story beautifully. And it stood up this whole thing about one part of a couple caring for the other part. So the person who I was acting alongside, his character had a degenerative eye condition, which means he would be blind by the time he was 30. And my character had a limited life expectancy. So by the time my character was dead and gone, he’d be blind and caring for a baby, after caring for me for all this time. So it stirred up so many different emotions. I found the whole process so emotional.
[24:04] Sinéad Burke: Did people reach out to you with stories of their own?
[24:06] Ruth Madeley: Yes, you know what? We had an incredible response. And it did so well. The piece was, you know, it won a BAFTA. It did incredibly.
[24:15] Sinéad Burke: No big deal.
[24:18] Ruth Madeley: The show won a BAFTA. I was nominated as best actress, so I feel like I won just by being nominated, so that’s a really cheesy line, but it’s so true. It was so unexpected.
[24:30] Sinéad Burke: I’ve never been to the BAFTAs. What was your BAFTA experience like?
[24:32] Ruth Madeley: You know what? It was incredible. The access on the red carpet — they thought of everything. It was incredible. Sadly, the access to the stage wasn’t. So, there was no ramp to the stage. It was at Royal Festival Hall, which is very old. And they have limited access in that respect. But yeah, BAFTA were the most supportive people in the world, but I still had to be carried on stage at the back.
[24:59] Sinéad Burke: Like my jaw is on the floor. Like, what does it mean, carried on stage? That they carried you in the chair?
[25:03] Ruth Madeley: Yeah. Yeah.
[25:05] Sinéad Burke: So how was that explained? Like did you get told the night of? Prior to? When was it said to you?
[25:11] Ruth Madeley: When I arrived? On the night. Yeah.
[25:16] Sinéad Burke: And you were nominated for best actress.
[25:17] Ruth Madeley: Yeah. Thank God I didn’t win, eh?
[25:22] Sinéad Burke: So what was the preparation? So you were backstage waiting to see if your name would be called?
[25:25] Ruth Madeley: No, I was in the — I was in the auditorium. Yeah, so, there’s a delay, you see, with the TV broadcast. So when Don’t Take My Baby won, we weren’t onstage so our exec. producer, writer, director, producer all went on stage. So they walked upstairs and I went round the side. I was carried on and then I met them on the stage.
[25:50] Sinéad Burke: And was that carrying on, was not visible on screen at home?
[25:52] Ruth Madeley: No, no it was behind a curtain.
[25:56] Sinéad Burke: What? I can’t believe this is. So, you know, Ali Stroker won at the Tony Awards. And that was in Radio City Music Hall. And she came in from behind because again, that stage wasn’t accessible. But you know, she was nominated six weeks prior to that event. So it’s not like — and in the BAFTAs — it’s not like they didn’t know.
[26:18] Ruth Madeley: Yeah. Yeah. I think — I don’t know whether it’s to do with Royal Festival Hall being the barrier there in that you can’t change access there. But I mean I can’t fault the people who did carry me. They were incredibly respectful and BAFTA were very, very lovely about it.
[26:34] Sinéad Burke: Were they apologetic?
[26:35] Ruth Madeley: Yes. Yes, they were. They did. They were like, “we’re really sorry. This is gonna be the way, this is gonna be your access, but I mean, it wasn’t access, was it, really? At the end of the day?
[26:45] Sinéad Burke: But that venue — I mean, when are we gonna start putting people before architecture?
[26:52] Ruth Madeley: Yeah. Yeah, I think it’s — again, at the time I think I was just so happy to be there. And again, I’d not done anything. I had not a clue about acting, or awards, or even BAFTA. And they’ve been a massive support to me. And I know through certain people that they are working really hard to change that now. But at the time, it was a case of this is what we’re going to do to help.
[27:21] Sinéad Burke: But as we’ve been talking, you know, the challenge is systemic. So it’s not just that there are no disabled talent, but access to art schools is a challenge. Both in terms of financial access, physical building access, there’s a lack of roles for disabled talent. And then when there is disabled talent and they win and are the most talented people in the room, they’re not allowed to accept the award on stage!
[27:45] Ruth Madeley: I would have crawled, believe me, when Don’t Take My Baby — I was like, there’s no way in hell I’m not going on that stage. When it won, I was like, I don’t care if I have to crawl on stage, I’m sitting on that stage. I don’t care because this is a moment. This is a massive, massively visual representation of disability. And there I am, I’m in my wheelchair. And if — I mean, at the time it was like, well, if I have to be carried on stage, so be it. But I think I’d probably become less tolerant of that kind of stuff.
[28:13] Sinéad Burke: Was it in the days after that that kind of dawning came to you?
[28:16] Ruth Madeley: Yeah, I think when people started asking me how was access, because I was on a job at the time. So I literally had we did the ceremony and then the next day I was straight back into work. And when people started asking me, and then you saw their faces when they learnt that I was carried, and then you’re like, “oh, hang on. Yeah.” I think if somebody else had told me that they were carried on stage, I’d be like, “well, that’s not good enough.” And I think that’s when the realisation hit, because I think you’re in a bit of a bubble, and it was so new. It was so — biggest night of my life. And you kind of forget all of that other stuff. You just think it’s fine, just make it work. And then afterwards, when people ask you about it and you see their reaction, you’re like, “oh, yeah, that’s not cool.”
[29:02] Sinéad Burke: And just the fact that you didn’t know until you got there.
[29:05]Ruth Madeley: Yeah. Yeah. I don’t wanna bash anyone because they were really supportive, but there was no ramp, there was no physical access to —
[29:12] Sinéad Burke: What frustrates me most about moments like these is that they happen in places where a warhorse can be built to go across the stage. Or an enormous ship can be created. And yet something like a ramp proves impossible.
[29:29] Ruth Madeley: There will literally be a ramp in every single space if I have my way. I will keep keep going for it. So to be part of that production, and hear responses from people who have children, and who are disabled parents, but also have disabilities and who are expecting, they were like, “I shouldn’t have watched it. It’s so terrifying.” But really wonderful, wonderful story to be able to share.
[29:56] Sinéad Burke: We’ll be back just after this break.
[31:08] Sinéad Burke: Those stories are just not part of our cultural norm. Like in Ireland, we have laws and legislation, like, there’s been many cases in the court where two disabled people have tried to get married and carers have contested the marriage due to assumptions about the capacity of those individuals. Or there is legislation in place that say determining the capacity of the individuals, it is illegal for them to have sex. But I’m also, you know, I have achondroplasia, which is the most common form of dwarfism, and it’s even those stories that don’t enter the culture that you don’t hear. Like, should I choose to have a child with somebody who’s a little person like me? There’s a 1 in 4 chance that that fetus gets double dose of the dwarfism gene and doesn’t survive birth. I didn’t learn about that until I was so much older because who gets to tell those stories? Who gets to greenlight them within, you know, massive broadcasting institutions? So we don’t hear disabled voices.
[32:06] Ruth Madeley: Exactly. I’ve always been incredibly interested in topics about disability, and I’ve always been very interested to learn more. And so I read a lot of things about it. But I had no idea that in my country, this was 11,000 cases just like this one for Don’t Take My Baby. 11,000 every year, 11,000 couples. So I’m thinking, oh my word, if I choose have a child one day, am I going to get like watched by social services to see if I can take care of this baby well enough? All of it stirred up so many emotions, and so many things that I wasn’t even aware of.
[32:38] Sinéad Burke: What was the hardest part of the process?
[32:41] Ruth Madeley: Well, one, being naked on TV.
[32:44] Sinéad Burke: How was that? Did your sister have thoughts and opinions?
[32:46] Ruth Madeley: She did! I was just about to say, because I was like —
[32:50] Sinéad Burke: My siblings would have had thoughts and opinions. That wouldn’t have went down too well.
[32:53] Ruth Madeley: No, she genuinely said, “if you don’t do this, I’m going to come over there, I’m going to beat you with a stick. Because you must. You have to do it.”
[33:00] Sinéad Burke: This is not what my siblings would have said. They said, “under no circumstance. And tell us exactly when it’s on, because we’ll be in the cinema.
[33:09] Ruth Madeley: We won’t be watching it. It was a really interesting thing, because there was a scene where my character — she was very reliant on her boyfriend to kind of care for her, because physically she wasn’t able to get into the bath and things. So he lifted her into the bath. So it showed that she was quite reliant on him for those kind of physical things. And I had a long talk with the director and producer, and I said — they were talking about different shots, how they could cut it. And I have a very large scar on my back from all my surgeries. And my body just doesn’t look like a lot of other bodies on TV. And I was like, “I want to be able to show that scar, because that is such a massive thing.” And I had some nerves about it. I said to my sister, “Liz, I can’t. I can’t do it.” And she said, “you have to, because if you’d seen, as a teenager, if you’d seen somebody like that, like you, on TV doing that, that would have been so iconic. That would have stayed in your memory forever.” And so, yeah, I wanted to do it and I felt incredible after it.
[34:15] Sinéad Burke: The very first audition that you did, you did because somebody in the room said that they needed a wheelchair user. And they were like, Ruth, you’re a wheelchair user. Like, how does that make you feel then and now? Like, how did you feel within that moment? Like, how do you build yourself to go? How do you not feel — not even objectified — but maybe it’s different because the dream wasn’t to be an actor, per se. But how do you kind of go, “I’m fitting in here.”
[34:41] Ruth Madeley: I think probably, looking back, I didn’t take that as personally because I didn’t have that — I’d not gone to drama school, and I’d not trained for years on end to reach this end goal of being an actor. So I can imagine that would feel quite hurtful if I’d spent all of that time training to be an actor and then the reason I got in the room was, “oh, we need one like you.” I think it probably helped that I wasn’t over-awed by it because I didn’t know what it entailed. I didn’t know the industry. I didn’t know what it meant to be an actor or to even audition. But I’m very, in a good way, opportunistic in that manner. I think things do come to you and it’s great to be able to just try to handle anything. So I’m a big believer that you end up and the way you were meant to end up and I know I was meant to do this, but I think the opportunity was just my way in. But I hope that’s not the case for people coming into this industry now. I really — I’d like to say it isn’t, but I will keep working to make sure that isn’t the case, because I don’t want someone who has trained, who has this incredible amount of talent, to get in the room purely because they need a wheelchair user and they don’t know where else to look. I hope that’s not the case. I hope they get seen because of their work and because they’re the best for it.
[36:02] Sinéad Burke: I’m very conscious that you and I, we’re both white. And I’m white, straight, cisgender and disabled. So even when we talk about these notions of inclusivity, how do we make sure it goes beyond ourselves? Because whenever we talk about disabled voices not being included, when they are, it’s usually white disabled voices. It’s usually white male, straight cisgender. So how do we make sure that that inclusivity is intersectional? How do we not just reiterate those kind of cycles of exclusion? Does that make sense?
[36:29] Ruth Madeley: Yeah, absolutely. I love working with as many different types of people from different backgrounds, races, genders, sexualities as I can, because I feel that helps me grow, both as a person and as an actress as well. So that’s something that I constantly like look out for. I work with some incredible writers who are from different sexualities, backgrounds, genders, religions, all of those things. And I think I don’t ever want to stay in one subgroup of people. I want to be able to expand and learn. So I’m constantly asking different actors who aren’t white on-set, what’s your experience of this and this and this? Because I’m fascinated by and learning from their experiences and how similar or dissimilar they are to my own.
[37:14] Sinéad Burke: And as you said, it’s about making sure that that inclusion is explicit because it’s not going to change if we’re not cognizant of it.
[37:22] Ruth Madeley: Exactly. I think it would be lovely to be able to say it will just happen, but it won’t. I think we need to be explicit about it until we don’t need to be.
[37:32] Sinéad Burke: What, besides your nosiness, is the quality that you’re most proud of?
[37:38] Ruth Madeley: Resilience, I think. I think I’m very resilient. I don’t think there’s much I can’t handle. But I can handle really big things like, you know, major spinal surgery. All the massive things in the world, but tiny little things I’m as soft as a sponge when it comes to.
[37:58] Sinéad Burke: Such as?
[37:59] Ruth Madeley: Needles. I’m no good with needles. I cry at everything, which is wonderful.
[38:04] Sinéad Burke: When did you cry last?
[38:07] Ruth Madeley: Probably yesterday. Yeah, yesterday.
[38:11] Sinéad Burke: What made you cry?
[38:12] Ruth Madeley: My nephew. He always makes me cry because I adore him so much. He’s hilarious and wonderful and just a beautiful, beautiful little man. And he just makes me laugh and cry all the time. And I love that. I cry when I’m sad. I cry when I’m happy. It’s just I’m a very emotional person.
[38:29] Sinéad Burke: I think that’s what makes you a great actress.
[38:31] Ruth Madeley: Well, it’s good for something. My other half’s always like, “why are you crying now?”
[38:37] Sinéad Burke: You’re like, “I’m practicing my craft!”
[38:43] Ruth Madeley: You’re messing with my emotions.
[38:44] Sinéad Burke: Speaking of practicing things, how do you practice resilience?
[38:47] Ruth Madeley: I don’t know. I don’t know how you would practice that. I think — I often think you become resilient when you’re not even aware of it. And you look back and you think, oh, you know what? That should have kind of broke me. And it didn’t. Those kind of experiences that you’ve had. And I think having a disability, I do think it makes you that little bit more resilient than you perhaps would have been, because you almost don’t have a choice.
[39:12] Sinéad Burke: And what’s it like to live in your body?
[39:16] Ruth Madeleyr: Hand on heart? I love it. I love it. And I think I love it with each year that goes on. I would be lying if I said there aren’t days when I hate it because of pain and you know, like anyone, why this today? Why this today? But 99 percent of the time, I love being who I am, and I love being in my body. I wouldn’t I wouldn’t change it. And that is hand on heart. People think I’m bullshitting when I say that. But I mean it. I wouldn’t change it because it’s taught me so much.
[39:46] Sinéad Burke: What does it teach you?
[39:48] Ruth Madeley: It taught me that I think I’m a lot more interested in people. I have a real fascination with people and their stories and their personalities and their experiences. I love learning from people. And I think a lot of that comes from learning who I am. At a younger age, I think, because you’re faced with some things that every other 15-year-old perhaps might not have to face. And I think that taught me a lot about myself. So I’m fascinated by people’s experiences. And it has given me strength that has made me a lot more stubborn and determined. And my disability doesn’t define me, but it definitely drives me. I use it as a driving force and I love that.
[40:32] Sinéad Burke: You talk there about being 15, and moments that change you. What was that moment for you?
[40:38] Ruth Madeley: I mean, for me, I’ve had spinal surgery since I was 12 years old. And sadly — well, no, not sadly. It kept going wrong, so I had a one-time spinal surgery turned into about eight or something.
[40:50] Sinéad Burke: How do you explain that to your 15-year-old friends?
[40:54] Ruth Madeley: I don’t ever remember explaining it. But I’ve got two — like one of my best friends who I grew up with, it was never even a conversation. It was just she knew. She was there with me. And the same with one of my best friends from school, she was never a conversation, she just knew. And now we look back and — imagine, being a 15-year-old girl is hard enough as it is — my word — without having to constantly go through this massive bout of surgery and then the recovery process after it. But looking back, I mean, more what fantastic experiences to be able to use as an actor now. All those emotions that you felt, all of those
[41:36] Sinéad Burke: Missing out of school. Trying to follow up with homework, trying to figure out what’s going on in your friend group.
[41:40] Ruth Madeley: Exactly. Social life. All of those things are massively affected. And it’s completely out of your control. And again, that stubbornness and that determination to just get well again. Quickly. So I could carry on living. It was horrible, but wonderful at the same time to come through it at the other end. And yeah, I think for me personally, it made me think, well, you know what? There’s probably not much I couldn’t handle now.
[42:05] Sinéad Burke: What gives you hope?
[42:06] Ruth Madeley: You know what? I’ve got a lot of hope anyway. I’m quite a spiritual person. I’ve got faith. I genuinely love waking up every single morning and thinking, “oh, what next? What’s next, now then?
[42:22] Sinéad Burke: What’s the mantra you say to yourself, what’s the voice in your head? What does that say to you every morning?
[42:27] Ruth Madeleyr: Turn on the coffee machine and get shit done. Genuinely. Now nothing happens before coffee. Yeah, just being thankful. I genuinely look around, especially when I’m working and I’m on set, and I just think, “This is amazing. I get to do this work for a job. I get paid to do this.” And if I can change the world for the better along the way, then life’s golden. It’s great. It’s incredible.
[42:54] Sinéad Burke: Ruth, this has been such a treat. Thank you so much for joining me on As Me with Sinéad.
[42:48] Ruth Madeley: Thank you so much.
[43:04] Sinéad Burke: You can find Ruth in BBC America’s The Watch and a number of other BBC drama series. So go and Google her. And she’s also on stage for just a few more days through February 1st in a play called Teenage Dick at the Dunmore Warehouse in London. So if you’ve nothing to do over the next few days, or if your schedule is entirely packed, make room for this show and for Ruth’s performance. On next week’s episode of As Me, I had the incredible chance to be in Los Angeles with the extraordinary actress Mara Wilson, who you may know as Matilda, or the cute kid from Miracle on 34th Street, or now the incredible writer. I really got to know her, and you will get to hear all about what it’s like to live in the shadow of the big roles that she played as a child, as well as some of the health challenges that she grapples with, like OCD and anxiety.
[43:57] Mara Wilson: I’m always very nervous, and I’m always full of doubt. I’m a very doubting person, I think. I doubt myself. I doubt everything around me. I don’t know if that’s because I have OCD, which is sometimes called the “doubting disease.” I think it’s just in my nature to sort of second-guess everything and not trust the world around me. I grew up near the San Andreas Fault, you know, like the earthquake fault. And I have this sort of allegorical relationship with it, like, things can shift at any time.
[44:23] Sinéad Burke: Continuing the themes of disability and film and television, well, it’s award season after all. This week’s person you should know, is Meredith Eaton. Meredith, like me, is a little person, but she has a different form of dwarfism, and in many ways has been changing the perception of people who looked like me on television. Meredith is a phenomenal actress who you may know from MacGyver. Yeah, really? MacGyver. If you’re not already familiar with Meredith work, this is the moment in which I recommend you to do so. And maybe even follow her on Instagram. You can find her there @themereaton.
[45:11] Sinéad Burke: As Me with Sinéad is a Lemonada Media original and is executive produced by Jessica Cordova Kramer. Assistant produced by Claire Jones and edited by Ivan Kuraev. Music is by Jerome Rankin. Our sales and distribution partner is Westwood One. If you’ve liked what you’ve heard, don’t be shy. Tell your friends or listen and subscribe on Apple, Stitcher, Spotify or wherever you like to listen, and rate and review as well. To continue the conversation, find me on Instagram and Twitter @thesineadburke and find Lemonada Media on Instagram, Twitter and Facebook @LemonadaMedia.