In this episode, Nora talks to Matilda Ibini. Matilda is a Nigerian Londoner and an award-winning bionic, Queer playwright and screenwriter with Limb Girdle Muscular Dystrophy. Their work often centres women, disabled people, Queer people and the Black British experience seen through a magical realist lens.
Today we talk about their work as a playwright and screenwriter, what it was like to grow up with Limb Girdle Muscular Dystrophy, the 90s and finding Black role models in girl bands, the Sugababes, Matilda's creative process and their play on BBC Sounds, Little Miss Burden.
You can listen to Little Miss Burden here.
You can find Matilda's website here.
Here is a link to donate to Tonya Ingram's memorial fund.
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Wow this is so life once you did a show that explores the intersection of illness, disability, healing and creativity. Seven years ago, I was told I would need an emergency organ transplant. Before they put me under, I close my eyes and imagine myself writing. Now all these years later, I can say, that was honestly what saved me. Well, in a brand new liver. I'm Nora Logan, and this is a podcast on how looking at death helps you live. Before we get into today's episode, I wanted to take a moment to pay tribute to Tonya Ingram, who was our guest for Episode Two. And the first person we ever interviewed on this show. Tanya passed away on December 30. And she will be greatly missed. She was a poet, mental health advocate, and friend to many. We're so grateful to have crossed paths with Tanya and her words, her work and the imprint she left in the world will stay with us forever. There is so much to love about Tanya, the love she offered so freely, her generosity, her easy laugh and sense of humor. The way she spoke her poems out and the way she spoke about her illness, and hope. We're so lucky to have known her. A memorial fund has been set up in her honor. We'll put the details in our show notes in case you'd like to donate. In the meantime, revisit her work, engage with her poems, watch her reading them out. Remember onto today's episode. Today we are joined by Matilda EBV until there is a Nigerian Londoner and an award winning bionic queer playwright and screenwriter who has Limb Girdle muscular dystrophy. Their work often centers women, disabled people, queer people and the black British experiencing through a magical realist lens. In this episode, we talk about their work as a playwright and screenwriter. What it was like to grow up with LGM D, their creative process and their play. Little Miss Bowden. Here's the conversation. Welcome to so life once you Dad Matilda, thank you so much for being here with me today. Thank you for having me. So you have Limb Girdle muscular dystrophy? Yeah. Which started to come apparent with some physical impairments when you were five years old. Can you tell us a bit about your condition and what your road was to diagnosis? Yeah, I'll try and give like a summarized version. Because the real journey was about eight years long. So I'd later find out that I've probably always had muscular dystrophy, and that the first five ish years of my life, it just took a while for symptoms to present themselves, but I probably have always had it. Muscular Dystrophy is an umbrella term to describe, at least to my knowledge, at least 60 Types of Muscle weakening and wasting conditions. And the type that I have is Limb Girdle muscular dystrophy. So the particular type I have is a disease that affects predominantly your girdle muscles, so your shoulders and your hips, and probably your core muscles. So basically any muscles that help support limb function. And so if those muscles don't work, or are affected by this disease that's making them waste away, then you have very limited control over your limbs. And so yeah, symptoms presented themselves when I was five, for a long time, not gonna lie, people thought I was faking it running on for attention. So that the most obvious symptom that I had age five was that I walked like a ballerina, like I walked on my toes, and my heels never touched the ground until I had surgery, age 1314. So I walked on my toes, which also then as I grew older, forced me to kind of lean forward so kind of developed something that looked like a hunch. Actually, it did deteriorate quite quickly, in the sense that I was losing the ability to things get off the floor, especially as a child in the UK, had lots of assemblies on the floor, so you'd have to get up and I'd struggled to do that. Then they put me on a bench and then the bench was too low. So I struggled to get from that. And then they put me on a chair, the chair still to learn and struggle to get from that. So there was kind of a clear deterioration as I was getting older. By the time I was 12 when I 1112 When I started secondary school, it was very more prone Now it's like you can very visibly see that had a limp. I struggled to climb stairs, I was very always looked, I was really wobbly, like I always looked unsteady on my feet. Meanwhile, I was having tests, loads and loads of tests, I was being referred from hospital to hospital because they were like, we've done tests. And we found we don't know what's wrong, but we can see that something wrong. We're going to refer you to this hospital, we don't know what's wrong, we've done our tests, we still don't know what's wrong, we're going to refer you to this hospital. And eventually, I was referred to a like pediatrics neuromuscular clinic where there's very few, I think, at that time, there was only like two clinics in the whole of the UK. Because neuromuscular conditions are often so rare. So then when eventually, when I was formally diagnosed at age 13, they were like, one of the first things we can do is a tendon release, which is to cut the back of my tendons so that my heel could touch the floor, because my heels had not touched the floor since age five. So they were like, that's one of the first things we could do. However, myself and my mom to misunderstood that as thinking that was the cure, that if you could, if my heels could touch the ground, then all my problems would be solved. And then after the surgery, little did I know that that isn't a cure. It's, it's mainly just to alleviate pain and not cause other kind of spinal injuries when your legs are not forming in the way that they're meant to. So I remember having to go back to school after this. So really major surgery wasn't in school for a good four or five months, and coming back to school and everyone else thinking it was the cure as well. And then being like, Oh, so you still can't do that. Or you still can't do that. You still can't do that. And that's like, Yeah, but my feet touched the ground. And I can wear shoes that are not orthopedic or specially built kind of thing. So it was hella disappointing us. 13 Yeah, and this was clay, cruelest. I know, I know that in the plate, so beautifully articulated. That that you you paint that picture? So it's it's it's confronting, but it's also your experience of it is so beautiful, in a way, like when you wake up from surgery, and what? I don't want to give too much away because I would love people to listen to it, but what your the voices of your condition tell you? And how you talk back to it. Can you speak a little bit to how you muttered that when you woke up from that surgery and and how it felt in that moment to sort of come to that realization? Yeah. So when I woke up, my casts were bright yellow, because my mom at the time, my mom knew that was my favorite color. So she'd already picked that out for me. So they were very obvious. And they were from like, my knee to my foot. So they covered my whole leg. So I didn't get to see my new legs as it were for a good, yeah, four to five months. And there was a lot of hope as well, like the physios were really optimistic about it, which is kind of what still bought into that thing of that this is somehow the cure, because I was being taught to use a walking frame with the cars that this shouldn't. Matilda having cars shouldn't stop her from walking. So we need to make sure that we don't lose the muscle function and that when the cars eventually come off, you'll be ready to start walking again. And yes, the surgery was successful in the sense that my heels touched the ground, I was able to walk a bit more, with a bit more control. And it wasn't causing like back pain anymore. And I didn't I wasn't hunched over when I was walking. However, the weakness was still there. Not you know, all the things that I couldn't do before I still couldn't do. And I wasn't going to figure that out until they took the costs of and that's when my legs were really I remember being like because I was 13 I was like, Oh my God, my legs are so hairy. They've not seen any light. It's like and I remember when my mom was helping me shave my legs and wash my legs. And I was like, Oh, this must mean like, oh, no, like, these are my new legs. I've got to do better with them now than I did before. Until finding out that like yeah, the surgery wasn't to take away all the other things that you can't do is just to improve the way that you walk. So yeah, it was a stark, stark reality a kind of reality shock and it made me dread having that first day back to school. I was like Mom, is there any way I can go to a different school? Like, can you just teach me at home? Like maybe we could get a laptop or a computer and I could learn from home like I just don't want to go back? Yeah, and that that age in particular. Kids are relentless. Yeah. Oh my god. It's wild. Like I was much I'm not afraid to share that I was bullied from year seven to year 13 So like, that's a long time of not just teasing, had people steal money by phone, like, take advantage of the fact that I can't chase you or fight back or anything like that. So it was it was very traumatic. And, and also, I went to a Catholic school, so it was even hella judgmental, like, more so than your average secondary school that just felt this extra error of judgment, because we're all meant to be Catholics as well. Yeah. And because you talk about this a bit in your work, this idea, especially in Catholicism, that you somehow, if you're sick, or if you're disabled in some way, you're repenting. Yeah. Was that part of your experience at school? Definitely. Sitting in Ari class and being told that the reason why disabled people exist, or what have you is because they haven't yet repented for their sins, or that why disabled children exist is because they're being punished, or their parents are being punished for their sins. So the idea of us, it was pretty negative, basically, the idea of just this constant you've always done wrong. And growing up disabled. I adhere very explicitly and also implicitly that, like, everything I do is wrong. The way that I walk, the way I climb stairs, the way I feed myself, the way I dress myself, no, no, you're not meant to do it like that. You're meant to do it like this. So it just felt going to a Catholic school just felt like extra punishment. That Oh, yeah, it's right for people to be making fun of the way I walk because I shouldn't be walking like this kind of thing. And for a long time, there was a lot of like, which I feel like it festered. A lot of the internalized a lot of that external bullying into kind of internal self hate. Because what how else are you meant to kind of combat those narratives, where everyone is saying that, if you pray more, if you faster, more, then you'll be better. And you feel if you if you're not getting better, it's because you're clearly doing something wrong. Like, there must be some kind of everyone was looking for some kind of deeper meaning as to why was I born this way? What must my parents have done to quote unquote, deserve me, when the reality is that disability is just random, it's just, it's a part of being human, that we're not all going to be able to do everything for all of our lives. And some for some of us, that's much sooner, and for others, it's much later in life. But no one is ever not going to be touched by disability in some way off form. It is just part of bing, bing. Yeah. And there's this beautiful scene in Little Miss Burton, which is the play that we referred to before. That's on BBC sounds that you can listen to. And it's between you and your mom. And you speak to this is a this the players are coming of age tale about your experience, it's autobiographical. And in the scene, you are saying, well, you know, this God that you speak of mum, and the prayers that you've been saying over me for so long, they're not working. And it means that there's something wrong with me. And then your mom, of course, says that you're perfect as you are and and that she loves you no matter what. But that projection onto you, especially at such a young age, must have really informed and like you say, this internalized, self hate internalized ableism from both a Catholic school, but then the ablest world that we live in how has through your writing, and through just your own self work and evolution, how is your perception of your condition changed? It's a really interesting question. One, I've had a lot of counseling my god I there's still a lot that I know, I'm yet to even address and things that I still I'm going to have to work through. So I know that's kind of like a lifelong journey in some respects. And it may not always be counseling, but some sort of therapy I know I'm going to need because of everything that I've been through like really some really really traumatic stuff that I couldn't even put in the plate because that was too dark. Yeah. You me both life. And I think one of the key things that I've I guess I've learned is one I can I no longer blame myself for my condition, like you can't blame yourself for the genetics that you get. That is the reality I've had to really bring Russia now into my life but not Russia. Now in the sense of just I've had to bring kind of sometimes what some people might describe as a kind of like a radical compassion. And that sometimes you may not understand why. But dealing with the thing can help you move forward. Right? That I don't have to there's never going to be a point where I turn around and be like, oh, yeah, I love having Limb Girdle muscular dystrophy, it's my favorite thing in the world. No, I'm always going to hate it, I'm always gonna get frustrated at it. However, my relationship to it is, is that I'm no longer going to punish myself, no longer going to apologize for my existence, I'm no longer going to, like live in a kind of regretful way, like, Oh, if I, if I could do this, then I wouldn't, I wouldn't be this or if I could do this myself, then X Y, Zed, I'm kind of more living. Okay, this is the reality of my situation. What would make me feel good right now? Or what would help right now, I've had to find the compassion that I can often show to others, I've had to learn to turn that inwards. Because I think that's what a lot of the things that I internalized was just out and out, like disgust of disabled people, like whether it was depictions that we saw in TV and film, the way that you'd hear people talking about disabled people that they might, they don't know, but see in public, like a lot of that I internalized because that's one because we're a kid and we were a sponge, we absorb everything we're taking in everything. But also realizing a lot of the ableism is steeped in myths. That's not the reality. People have just been kind of taught to think that's real, or that's true, when in reality, it's not. And they often think sometimes what like, what how would my life look if I never discovered writing and storytelling, cuz through that, if people for lots of different reasons for capitalist reasons for white supremacist reasons why the narrative ableist narratives exist? They exist. So then why can I come up with stories that counted those and make those exist? I think we so often with that myth that you speak of we are shown that disabled people, people are somehow less than human. Yeah. And yet, when you look at how disabled people live their lives and the art that we create, and what the world views that people have. It's so colorful, and yeah, humanity is so rich, which is why your work is so important and why it's, it's another way to look at the world, right? You refer to yourself as bionic Yeah. And you write, I adopted the term bionic when I became a full time wheelchair user and had metal implanted into my leg after a traumatic fracture. Even though the term encompasses my experiences from birth, that I've always needed some form of technology, equipment, or adaptation to live. Can you talk a bit more about the origins of this brilliant term? Thanks. I definitely did not coin it. I'm pretty sure I've seen other people. Other disabled people describe themselves as Bionicle. Cyborg. Yeah, which I thought was really cool. And also as a kind of fan of sci fi. I kind of like to think of myself as bionic, yeah. But it really came for me the clarity of that word came to me when during a stage where now I'm becoming a full time wheelchair user, which was really scary to me at the time, actually, because I have been able to walk at least most of my life up until, what age 25? Six? And yes, slowly and yes, with a lot of difficulty and with a lot of pain, but that's the that's only that's the only way I've known to exist. And so now all of a sudden, I have to use a wheelchair full time. And that's not how I've existed previously. So it was this massive adjustment. And it just kept going back and forth. of kind of like, I guess fearing what what will happen. What would the world be like if I can't just one day get out of this chair and climb some steps? Or oh, that place is inaccessible, but I can still climb steps to get it. And so it felt like this real change to my way of life that I'm no longer going to have that option. If something isn't wheelchair accessible. I can't go there. I can't participate or what have you. And I was having a conversation with a friend she was like, Well, you've always been somewhat part woman part metal now you've got it physically in you. And even though she said it in a really joking way, it kind of stuck with me because I was like, Wait, hold on. I've always needed walking frames, crutches legs, splints, I've lived a very bionic life. Without those adaptations, I would literally not be able to move, let alone do all the things I've been able to do. So it was kind of like an acknowledgement that I'm bionic, and also the work that I make will always have some kind of bionic pneus to it. Because my work is always informed by, by my experience, even if I'm not specifically writing about my experience, like, and I guess it also kind of makes me think of like, when, you know, I still identify as a disabled writer, absolutely. But I would never describe my work as disabled or even disability led, it just is. And even though I'm not even if I'm not always explicitly writing about disability, my work was still being formed by it, because that's my lived experience. So I kind of liked using the word bionic, to describe the influence of the common denominator in all of my work, which is being physically disabled. It also kind of, I'd be curious to know what you think about this it because your work, is also there's a lot of magical realism in it. It flows and weaves in really nicely with the idea that it's bionic. Is that do you think about that, when you're when you're working on things? Or is it sort of mutually exclusive? A part of me feels like it is mutually exclusive, that my imagination has always been very vivid, very expansive. So like, the way that I think and interpret things in the world is often in some kind of magical realist way. It almost feels like the default in my work. But that's really interesting from like, I guess, an outsider perspective, how that could weave into my bionic experience. Yeah. Well, to go back to your play, little miss burden. This is, like I said, a coming of age tale that brings together 90s nostalgia, your Nigerian family growing up in East London and Sailor Moon, which really spoke to my my child's heart. And it tells us sometimes trick tricky, often funny truth about growing up with a physical impairment. And I was telling you earlier, I've listened to it twice now. And it's such a funny, beautiful piece of work. And I also already told you this, but I love the way you bring in so much amazing 90s music into it, and how you even Cleopatra coming atcha over and over which I love, and also how you go between family life, being a Londoner, being with your Nigerian family, the hospital and also being at school, which we already talked about. I'm curious to know, when you were in the process of writing this play, and then putting it up on stage and then having it having the recording done for BBC sounds? Did you find that process cathartic? Because it was so closely linked? Do you talk about your sisters and your mother? They will have massive roles in the play? Yeah. I'd say in the beginning, it was it was very cathartic when I was just writing it. And I wasn't aware that it would one day get programmed or wasn't aware that it would one day become an actual production kind of thing. I think when you're just writing, and it's just you and the words, that's where a lot of healing can happen. I think what what some of the difficulties I faced was when I realized, Oh, this is going to be put in front of an audience. Oh, my family's gonna see this, oh, do I want to be dragging these things up that I've long buried or some of some things that I've not even yet processed? One of the tips, I always advise anyone writing autobiographical stuff is, if possible, have some kind of mental health support in place. Because I was during the process of not when I first wrote it, but when I realized that when I was starting to write it for performance that I knew that this was going to be on stage is when I started seeking mental health support. Because dredging up a lot of kind of trauma, like it's and that's the thing as well, like, I was very conscious that I'm not just writing a play about tragedy that I'm not saying being diagnosed with a condition or any kind of long term chronic illness. I'm not saying that there's it, there's only pain and suffering after that I wanted to show that there is like there is hope there is life after diagnosis. Right. And and I think during during that process, I was having basically like nightmares, I was having all this stuff that I had long buried or didn't want to think about or address started coming up in my dreams. And I was talking about this with my counselor at the time, and we were kind of unpacking things. But she also helped me remember that I don't have to put anything in the play or on stage that I don't want people to know. I actually get unlike the things that happen to me. For the sake of telling this on stage. I can actually edit I can take stuff out. I can not have things go a certain way. I don't have to be 100% factual to what actually happened. It especially if that's to protect myself. And that was really freeing. And it was great to have a space where I could have those kinds of almost sometimes like debates with my inner self about why should we put this in? Or is this too traumatic or actually I don't want. I don't I personally don't want people to know about this. It's none of their business kind of thing. I think that's where some of also the catharsis could have come through as well, that not that I was rewriting history, but I was getting to tell the story on my terms, without any other voices. Like, no one's saying, Oh, but this happened or don't forget about this, it's like, that doesn't matter. This is my POV. And so for example, the very, very brief but awkward conversation I had to have with my family about some of the things that were going to be in the play that they may not have been aware of, because those were things that they hid, or kept quiet about as a teenager, made sure to give them a heads up, but also say that I'm okay, now, that's stopped, that doesn't happen anymore, have you? And also that the characters in the play are not 100% them. Because there are so many people involved in helping me get to where I am today, I couldn't put them all in the play. Otherwise, it'd be a 10 day play. Like, it'd be a saga. Right? So a lot of the other people in my life are also in those characters. So you're kind of an amalgamation of lots of different people. And this is not how I think of my oldest sister, this is not how I think of my younger sister. This is not how I just think of my mum that lots of different people mixed in with them. And they're just kind of avatars for all these different people. And also have a younger brother, and he was little bit pissed in the play, but I was like, don't worry this, it was about girl power. And it worked. Because I really liked that he picked up on the kind of 90s stuff because actually growing up black British in the 90s a lot of where we saw representation in ourselves for ourselves. Wasn't UK television. Cleopatra, it was mainly actually in black girl bands. It was in the American black girl bands, the Destiny's Child, the three Oh w the TLC, you know, the sugar babes, they were in lots of different girl bands that we were able to see ourselves represented when we often didn't, yeah, I love how sugar babes comes up. i So identify with that. Because I'm currently working on a bug myself of sometimes I'm, I'm in the process of writing it and it'll just feel like it's too much. And also, I've had to make some really cutthroat choices because like you if I wrote every character and to every single person who's helped me or you know, a community, member or friend, family, whoever it is social worker, then it will be like war and peace. No one will want to read it. So it's, it's interesting to think about how we have to make choices when telling our story to make it more accessible to people. Yeah. And also, it speaks to how complicated the experience can be right? And how and also how full. Exactly. And I think, writing about ourselves, like that's often the place to start or for any writer, like, it's not to say that you have to write about your most painful things that have happened to you. But more so what are your experiences of this world? Because we're all stuck on this planet? So what what's going when I'm going through this, what are you doing? What's happening for you kind of thing. At the end of the play, you shout out, you're disabled, and list a bunch of different rights that disabled people have, and should have that have yet to be written into law. Would you be open to reading some of those rights for us from the end of the play? Yeah, I'll give you like an abridged version just because it is a very long Yeah. Yeah, great. So this is from the scene, rubble of rubies, which is the very last scene of the play. So it goes lights up. We're not performing now we are in the real world. And there are things that need to be said. And throughout this scene, it's a combination of the main character little miss her older sister, big sis, and her younger sister, little sis, kind of reeling off all these different rights. So I just give you a kind of short snippet. There are rights that have not been written into law, yet for people like me, but we know them to be true and just, they may well never be written into law, but they do exist. These rights are yours and you must defend them. But you don't have to do it alone. These rights must be protected. These rights must be uttered. These rights must be heard. You have the right to remain loud and proud. You have the right to take up space on a bus or on a train, on a plane, you have the right to a world built for you and not against you. You have the right to choose your bedtime, you have the right to choose a lifetime, you have the right to just choose and not apologize. You have the right to create dreams to plant seeds and watch them grow. You have the right to find yourself, feel yourself, see yourself, demand more for yourself. You have the right to just fucking be you have the right to just fucking be you have the right to just fucking be thank you for reading that. I think I myself have really struggled with this idea that I'm supposed to somehow perform. I'm supposed to feel grateful. I have I carried guilt with me. And I've had people even say it to me, I've been crying before in hospital and I've had someone really well meaning say to me, your tears should be grateful tears. God is good. Can you talk a bit about this right to just fucking be when the world is telling us we have to be a certain way or we have to be grateful for for the treatment we have or the support we have or just, you know, whatever it is, whatever it is that's being kind of thrown at you in in whatever moment. How do you grapple with that that right to just fucking be? Well, firstly, I'll be honest that I still get the guilt, I still get the grateful comments, I still get the You're so lucky to have been born in this country. All of that like, and I hope one day people like depending on where people are on their kind of journey with disability that one day, I don't know if it comes with age or something or with counseling or something that there will come like a time where you realize it's all just bullshit. Yeah, that actually, you don't need permission to be disabled in this world. People just are, you're born like that, or something happens later on in life, and then you become disabled. So like, becoming disabled is never a choice. Therefore, why should I then need to be grateful for things? You know, we are so even as like the human race or whatever, like all that kind of stuff. We're so diverse anyway, like, there is no one way to be. And I think a lot of the time, when I look back, I was just asking, I just want to be myself. I'm allowed Am I allowed to just be myself? So long as I'm not like bothering anyone harbored anyone? Can I just be for a long time I thought I could earn I thought I had to be trying to get cured doing the physios so that I don't get worse or what have you doing all these surgeries? or what have you? And actually, where did that get me except more miserable, more depressed and incredibly anxious. And I think I did get tired at one point. Because actually, the world is asking a lot for it. But you're asking me to change my genetics, something I have no control over, when the world is much easier to change than trying to change genetics, environments are much easier to change and trying to change genetics. So I didn't do this alone. Definitely not this is from having a support network, I definitely know that I too, have privileges having a support network that I can rely on having access to a care package where carers and personal assistance can provide the support that I need, being able to go to university and that experience, which then kind of set me up for being able to work for myself, like I've had all these opportunities that have definitely afforded me privileges. So I'm definitely not aware that not everyone will have access to that or that those opportunities. But I think it feels like a combination of a lot of things that have come together that I've just realized I cannot fucking change my genetics. I couldn't back then. And I don't I'm not going to spend the rest of my life trying to now but what I can change is that there are so many things this mod is big enough to allow me to just be this one is fucking massive. That may just staying the way I am is not hurting anyone. I love that. As you were talking, I was thinking about how I've had to really cultivate that. That guilt that I carry around with me to cultivate that don't don't give a fuck ism type thing. And it's it's a daily reprieve. It's you just have to keep going back to it because Is it doesn't, it doesn't just show up one day and say, Oh, you're guilt free now. It's, it's, it's like it takes work to really get to that place. Yeah, it's not just you wake up one day and you're like, oh, cool, I'm good. I, even though I didn't really understand it back then, but I definitely understand it now that I didn't realize that I was diagnosed as something that was going to be so long term that like this is for the rest of your life, right. And, rather than an almost felt like, sometimes I used to think I wasted so much time just not being like, not raising so much time trying to be someone I could never be, which is a non disabled person. You know, when actually what challenging those kind of internalized ableism or having the space and support to do so, men, I realized that I could still be a great sister with muscular dystrophy, I could still be a great friend with a muscular dystrophy, I could still be a great partner with muscular dystrophy that none of having my surgery didn't take away from any of those things unless I let it to some extent. Because actually, that's something about myself that I can never change. It's a permanent thing. So why would I spend so much energy trying to do what scientists apparently, you know, have spent more more long before I was born trying to find a cure for this thing? When actually, my energy and time is better spent? Being a good friend, a good sister, a good person in the community? And speaking of your sisters, how is I love the relationship between the sisters and littleness burden. How is your relationship with your sisters and your brother? Yeah. Oh, very, we're very close. Yeah, like I'm second oldest of So there's four of us. And, yeah, we're very close for like, four siblings are very quite big age gaps. So my oldest sister is like, five years older than me, my youngest sister is four years younger, and my younger brother is seven years younger. And we have each other's back, for sure. They are like, they are kind of like, they had to become my best friends. Because when like when, when you're just when you just have siblings, you're just like, Oh, you're gonna be in my life forever. There's nothing I can do about it, because we're related. But actually, we've become like, they are my best friends because of everything that we've been through together in many different ways. And also, yeah, they've probably learned a load about muscular dystrophy by having a sibling with a disability. And I'd like to think that also learn how to care for someone. And rather they learn about caring from a very young age. And maybe that might make them better partners, when the when they, you know, find whoever they're looking for kind of thing that actually, they know how to care. more so because they've had to care, they ought they've all had a hand in my care at some point. Speaking of caring, you've spoken before about your mum and how she was your carer and then transferring out of her care and living on your own. And also, she features so heavily in the play is this incredible Nigerian matriarch? How has that both that shift to being more independent? Been on both your relationships like for her, but also for you? Yeah, I mean, it's been scary for both of us, like, she didn't want me to move out. And also a part of me also didn't want to move out. But I had to because the house that she lived in was so inaccessible, and my condition had progressed to a stage where I really needed a wheelchair. And if it wasn't for a very supportive and like a physio who went above and beyond her paygrade to help me make sure I got on the Housing Register and checked up on me and things like that, because her her big thing was that because my mom has so many stairs in the, in the family home, one day, I could fall when no one is about and I might not get up again, or I might not be the same when I get up. So that really made it apparent that yeah, actually, I don't want anything to happen so bad that I'm a different person. So that really made it apparent that I had to move out and that whole process like I feel like that's, that could be an entire podcast. In itself. You have to come back moving out and you know, the housing crisis in the UK and also the care worker shortage in the UK. That's a whole other series but what I can say is that I feel our relationship definitely improved. Because I moved out like it is a lot for a single mother to be my fault, to also be my full time carer as well as raising my youngest siblings, and have and be working full time as well. did start to put a strain on on our relationship and it did start to put a strain on the household, because actually my condition requires constant maintenance, constant monitoring. To some extent, that would have only been possible she gave up work, but she still got two younger kids to raise. So it was kind of, again, another privilege of being able to move out into an accessible home. It's not always been easy trying to get the care package that I need or the carers that I need. But it was definitely worth the fight, it was definitely worth the journey. Because now my mom just gets to be my mom and not mom and carer. And I know for some people that that might not ever be an option, actually. But hopefully, there are ways to be able to maintain those familial relationships where they just get to be family, they don't have to, like they're clued up on how to care for me when there are emergencies or if we go on holiday or what have you. But actually, that's my carers jobs. Yeah, it changes the relationship. Yeah, back to sort of familial dynamics. Exactly. And I remember when I first moved out, and my mum would call me like, every day, how are you? Are you okay? Have you eaten? What type? Like, what are you doing that kind of thing, and there wouldn't be times where I didn't need her and she was in she was at work, and I would just have to wait. But thankfully, those days are long gone. But you know that that had to be that adjustment, where it's okay, Mom, I'm okay, I'm in my flat, I'm in the safest place I could be. And it's accessible, there are no stairs, nothing to trip me up, that kind of thing. So it kind of helped us both grow. And now she she feels, which also makes me feel good. Because I know, I'm very aware growing up that I scared my mom a lot like my condition scared her, which is what I was. Yeah, I just feel like I'm making a career in my flat. But there were times where I could see as a disabled child that I was scaring my mom. And I wasn't it's not that I was doing anything to scare her. It was just the way that I moved as the way that I did things or couldn't do things. And now, to me, there's a little bit more peace and probably less guilt as well, knowing that my mom doesn't call me every day, but she does call every week that she knows that I am being taken care of and well, and that if there's is an issue, she knows that I will come to her, but also knows to trust that I can take care of it. Well, actually, this is a good moment to shift into talking a little bit about dating. Because you know, having more independence, yeah, that you can go into the dating world a bit more. And your micro play head over wheels. It takes a comic view on dating as a disabled person. And I loved it. And can you talk a little bit about how you came to that project? Yeah, so that was originally a which is what it's called a micro play. So this I've met this director called lie Alterna, and he runs a film company and a theatre company. So basically, they commissioned five writers to write micro plays, that we're going to be performed on stage. And they couldn't be I think, longer than probably five, six minutes. And they had to be about something that felt most fairly controversial, but that drummed up a conversation. And I remember thinking about I don't even know how I came to head overwhelms, but I just remember thinking I had not often seen disability and rom coms. Like why haven't I seen that? And if I have, it's usually from a male perspective. And it's usually from a street perspective. I was like, Oh, that might be something if I could write something that was queer and, and that also had disability but also wasn't about disability as well. It wasn't about oh, woe is me, like, oh, I can't find anyone or that people aren't interested in disabled people. It was actually more like, someone who is very, I wanted to write a character who was very confident and assured in themselves. And I think that's where it came from. That really comes across and the character is very Spacey. Did it completely come from your imagination? Or was it informed by experiences you've had? Um, yeah, I think a bit of both. Yeah, where I'm not gonna lie. It's not that I'm not into dating, but like, I kind of treat everyone the same. I'm not I don't often pick up on like clues. If someone's flirting with me, I'm like, you're gonna just have to see it. So I know. Otherwise, I'm just gonna treat everyone the same kind of thing. And, and I feel like often what what I guess what I realized is often when it came to dating, people always want to put everything on the table like, Oh, what is your and I felt like that. For a disabled person. I'm not even if I Even if it was or isn't a date, the first thing I'm not going to do is just like blurt out my medical history, right? Like, I'd actually like to get to know someone, even people that have become really great friends. It's probably taken a couple of Hangouts before they've asked, Oh, could I ask why you're in a wheelchair? Because actually get to know me as a person first. And I think with dating, I guess what I was challenging is that sometimes non disabled people use dating as a way to like, just get medical history is like, oh, so is it genetic? Can you pass it on to children? They're like, whoa, we've just met, what are we talking about children and whether or not if I can have them? Or if you know, they'll have the same condition as me like, yeah, actually, dating should, in theory work the same way for disabled people that you're getting to know that person first? Should it really matter what their condition is? And unfortunately, in the kind of vain ablest society that we live in? Everyone wants to know, everyone's business. And I've like, no. So I kind of choose why the conversation that they have isn't about this woman. And actually, the the woman, the love interest, walks up to her to the main character, if she has a lighter, because actually, those kinds of conversations do happen in real life. And then they end up talking about their past and things like that. And we don't ever bring up the fact that oh, why are you in a wheelchair? Is that really any of your business unless we're going to bid? Like, really? Really? Really? Yeah, you do not need to know unless we're shagging? So I think that's kind of Yeah, where it came from. And I only had five minutes as well. So I was like, trying to pack in as much as I could. Yeah. And it will. And it's such a great conversation, because it's not about disability. It's about the humanity of both people in it. Yeah, disabled people get home and eat. Yeah, on a day when I want to do this. Exactly. And that's and I think, in from the outside people often desexualized to say, oh, apps and infantilize as well, so that no disability and sex should never meet or engage. And you're like, Oh, your life is boring. So you touched on it before a little bit, but how you use humor in your work? And how it functions in terms of kind of bringing some levity to what can be a heavy subject? Is it always intentional for you? Or is it? Is it just your style? Is it just natural, I think I'd like to say really coolly, that it's my style. I also come from a very funny family, and a very funny culture, like a lot of nine Nollywood films that I grew up watching are hilarious, like, they use slapstick. Sometimes they're culturally specific, sometimes they lean into stereotypes. So like, I guess, to some extent, there's, there's always been humor in the home, and encouragement of humor. So it kind of made sense that it find its way into my work. And for me, I guess I'm very, hyper aware about the narratives about disability. And it's not that I guess, it's not to say that I leaned into comedy just for the sake of trying to counter those narratives. But the reality is, like writing Little Miss Byrd, and the reality is as traumatic as some of my childhood is, there are also some incredible moments and some real funny moments. And, and I felt like, and maybe it's even part of like a coping strategy that when you go through really dark things, you often find you're often develop a dark humor. But I feel I feel like a lot, if not all of my work has some kind of humor in it. Just because that's how I see the world. And maybe also how I interpret the world that there are often Yes, very serious, heavy things. But I'm also looking for light and searching for light as well. Because I know, personally, that my life has not all been dark. So I often want to try and play with that balance of heavy and light or dark and light. Yeah, and they say that tragedy plus time equals comedy. I would also say that trauma plus time equals coffee. Yeah, honestly, like I'm not even gonna lie. Some of my humor is very dark like I do you go there in some work. And even just with like, some of my really close friends know how dark I can go. Yeah, I'm here for it. Right there. So in the summer of 2021, you wrote an article called Dear fellow writer. Would you read an excerpt from that for us? Yeah. So this was letters to fellow writers, and it was commissioned by tiata for hood See, just a The African lead theatre company in the UK, and the Commission five writers to write letters to fellow writers out there, both in the UK and further away about it was specifically about applying or entering the bruntwood prize, which is one of the biggest playwriting competitions in the UK. But I think it was also about just reaching out to fellow writers during this time, this isolation and I guess I kind of interpreted the brief about trying to, even though if you don't always do that, you'll always be a writer, even if no one ever knows that you write or no one ever sees your work. But if you want to make writing a career, you're going to have to kind of take some steps to put yourself and your work out there. So yeah, I'll happy to read a little snippet of it. When deciding to become a writer, it is never an easy decision. It takes a dollop of courage, a heap of hope, and a sprinkle of fear just for good measure. This recipe is a mess. But what I'm saying is that it's not a decision one takes lightly. So if you're at as, so if you're at the stage of thinking about it, good, you need thinking time. If you started to take tentative moves to writing or have started putting words to page even better, it's never a straightforward journey. Irrespective of your reasons for deciding to go on this journey. At some point, you'll come to realize that there are many routes in but not all the routes lead you somewhere better or even different. So I thought I'd share some insights I've learned that may help or not you on your way. As you begin this track, you will notice how some people in this industry gets stepping stones. Some people get stepping bridges, whilst others inherit stepping superhighways, meaning your journey to becoming the writer you dream of, is not impossible, but you will need to locate a dream or create your own stepping stones. I'm curious to know where you are currently on your track and how you create your own stepping stones. I love that super Sam inherit stepping stone superhighways? Yeah, oh, my God isn't writing elitist. Oh, my God, like you spent a lot of time on your own writing for yourself unpaid, before eventually finding some way to convince someone to pay you to do it. And then you have to do that again and again, so that you can keep the lights on and bills paid and food in the fridge. And I can't say that I've found the secret equation, or I've nailed it. But I've certainly found stones that I've still on and that are sturdy enough to keep me afloat. I guess what some things I'd suggest or have been suggested to in the past, where if you can find a local writers group, you know, if you're interested in writing books, see if there's a local book club, if you're interested in writing plays, see if your nearest theater has any kind of program, or course that they might be that they might run this is specific, I'd say this is more common in the UK, just because often if they receive any kind of public funding, that often means they have to have a kind of outreach. What are you doing to engage the public, and one way of doing that is having like playwriting courses. So there's that way, there's also the way that I used to do before in the in the fuller version of the letter, which is I spent a lot of time in the library, I have a reading plays or reading how to how to write play books. And just figuring it out. I think reading plays is a really great way to like if you're interested in writing books, you should be reading books. If you're interested in writing film, you should be reading screenplays. If you're interested in writing for theater, you should be reading plays, that's the first thing you should be doing. Because if you cannot read or imagine or understand what's written on the page, you're gonna struggle to then just go off and do that yourself. As opposed to like, you can refer to different Playtex or like I really liked how they wrote this particular scene or I really liked how they develop character journeys or what have you. So reading a lot in the medium that you're interested in is one good stepping stone. I was fortunate enough that I did a degree in creative writing in English literature, that we only had one module in playwriting, and what is in Screenwriting? So I was fortunate enough that I did a degree in creative writing and English literature, but we only had one module in playwriting and screenwriting in the entire course. So I was very dependent on like finding programs that I could do that will either through free or really cheap, or master classes or workshops. So I attended as many that I could find really, or YouTube is, is a great resource nowadays there's so there are 1000s of videos from from different countries about playwriting, and screenwriting. So that you can find hours and hours of videos of how to in terms of like the format, how do you break down a scene? How do you write a character biography. So like YouTube is a great and free resource. So if you can access YouTube, that's always a good place to look as well. Like I said that because I did a degree and then I managed to get a scholarship to then do a master's in playwriting, and screenwriting. So I essentially had two years where I just got to write nonsense, like just explore, like, Oh, can I write like this? Or could I write like that. So that two years was really invaluable to really developing my voice, trying things out, and also being allowed to fail. Because trust me, when I say that, like, when you're beginning writing a lot of this stuff, you're right, we'll be shared, like it will be absolute garage, total shit. But if you keep going and have patience with yourself, you'll, you'll get to that point where your script is more than just readable. It's understandable, people can imagine it, people can see it. And that was there through through if you're able to find if you aren't, if you aren't able to find a writing course or program or club, maybe start, maybe think about starting one, see if anyone else is interested in maybe going to see theater together, or reading plays together and dissecting them. Anything that helps you get to grips with the understanding of the craft, I'd say do it. I think something that's a misconception, often looking from the outside in a creative people is that, especially writers because there's all this sort of mythology around writing and how people write, you know, golden hours, that a lot of people write for a couple of hours a day. And that's it. And that's, and some people write more, but as long as you write and you write every day, your writer, excuse me, let me caveat that not every day, even if you write, and you write when you write Yeah, I think some people will say if you write and you write every day, you're a writer, but I think it's actually you write when you write, I write when I can Yeah, because sometimes I'm not sometimes probably every week is a day or a time that I can't write. So I have to write when I can. And that's that has to be good enough. And it is because it works for me. And it still enables me to be able to write to make work because that's that's the I don't write for. I don't write just for myself, I'm often writing for performance. I know that hopefully whatever I'm writing will one day be seen by an audience. But even to get to that stage. I have to write when I can. Because the reality of my condition is no date. No day is the same as one day where the pain is so bad. I can't get out of bed. And there are other times where the pain is bearable. Where can sit in my wheelchair. Yeah. So speaking of projects, and what you're working on right now you're working on a film, is that right? Called caring? Yes. Can you tell us anything about it? Yeah, so a co written with my co writer, Gabriel Bisset Smith, who is also a director, and he'll be directing it. And it's really exciting. We've had some really exciting meetings, development, film development is weird and long. I don't think they they don't tell us that. They're just like, oh, you find rich people who have money and they give you the money to make your film. That's a lie. And then it takes 15 years, takes so long, and we've been co writing this for like six years now. So and we're just finally making some exciting headway. But yeah, so caring is about a young disabled woman called Tony, who finds out her new perfect carer because good care is hard to find that her new perfect Kara March is also a serial killer. And instead of doing the responsible thing like most adults do and would report her to the police, they instead end up tag teaming Thelma and Louise style to take down the local social services. Oh my god, that's so good. It's basically a revenge fantasy. Yeah, that's awesome. Well, well look out for that whenever it comes to fruition. Thank you. So I always like to end with three questions. And the first one is, if you lived in a world that completely catered to LGM D. What would that look like? It wouldn't have gravity. We'd all be floating so there'd be no need for stairs there'd be no need for pretty much anything. Everything would be accessible to everyone when there's no gravity. be sweet. Because we're floating, everyone has to move slower. We can't be can't move to the same pace and speed that this capitalist society has us moving at. We have to slow down. When there's no gravity, you have to take your time. And not rush. Yeah. And not trip over yourself. Try to Yeah, just because. Yeah, exactly. Because things take longer. You have to take your time look after yourself. People aren't then as they're not as stressed when you take your time. uniform. But other what's one thing you do to keep yourself creative each day, music, I've got different playlists for different moods, different occasions, I've got different playlists for different projects. Music is one really important thing to me. Because I often like one because I'm a massive fan of music videos. So like the music videos of Janet Jackson, Missy Elia, like Beyonce, that they're all like mini films that always so cinematic, or Janelle Monae. So like music often is a really great way just to take me away for a little bit like, from our reality, or from the stresses of whatever's going on in my life. I can just go away somewhere for however long the song is or however long the playlist is. And just and just be. I think that's really important that in creativity is also knowing when to stop, and to just rest and engage with other beautiful things. Yes. And people like Janelle Monae, great worlds for us to enter into. Exactly. I want to get lost in someone else's imagination. Yeah. And finally, what's one phrase or saying that you always come back to something that my mom says a lot, which is no one knows tomorrow? So even if I've had a ship day, a ship week, a ship month, maybe my mental health isn't great. No one knows tomorrow, what tomorrow may hold what it may bring. And it's a small thing that she says, But I hold on to it a lot, because there's a lot wrong with the world at the moment. Yeah. And maybe we just keep hoping that tomorrow is a brighter day. Yeah. Thank you so much for being here today and tell that it's such a pleasure and an honor to speak to you. Thank you for having me. It's been really lovely. That was our show. So like once you Dad, thank you so much for listening. You can engage with Matilda EBTs work on their website, Matilda ebene.com, where you can find out about the upcoming film and stage work. I also really encourage you to go listen to their play. Little Miss burden on BBC Radio four. You can find a link to that and more information about them in our show notes. This episode was made in collaboration with and support from Soho House. Many thanks to Jamila Brown, Minh Trumpton, Camilla Weston, Olivia Garrity car Muhammad and Erica bunny. Our illustrations are by Rene Fagan. And if you like what you hear, please subscribe. Leave us a review. Rate us on Apple podcast Spotify, or wherever you get your podcasts. If you love us, reading us and subscribing really makes a difference. You can find us on Instagram at select one to dead, where you can follow along for updates about the show. Thanks so much and see you next time.