鲍鱼tv

This is a full transcript of the Ouch podcast 鈥� Matilda - Little Miss Burden, presented by Emma Tracey, as broadcast on 2nd December 2021
JINGLE - 鲍鱼tv Sounds: music, radio, podcasts.
EMMA - Hello, I鈥檓 Emma Tracey and this is the Ouch podcast. It鈥檚 a disability thing. We鈥檝e had some cracking episodes recently. Our Beth spoke to two disabled Americans about their zero gravity flight, and Keiligh chatted to environmentalists about the huge impact that climate change is having on disabled people all over the world. This time I get to have a conversation with a young black disabled playwright from London whose voice is so calming and whose story is utterly relatable. You鈥檒l hear some clips from Matilda鈥檚 radio play, Little Miss Burden, throughout the chat, and I鈥檒l be back again at the end with our contact details. For now though I鈥檓 going to sit back and let Matilda introduce herself.
[Music]
MATILDA - My name鈥檚 Matilda Feyisayo Ibini and I鈥檓 a bionic playwright and screenwriter from East London. And I鈥檓 just going to visually describe myself. I鈥檓 a black woman in her early 30s wearing my thick-rimmed glasses, a blue t-shirt and my African print bonnet.
EMMA - And you called yourself a bionic playwright, what does that mean?
MATILDA - Though yes, I do identify as a disabled writer and a disabled person, my work isn鈥檛 disabled. So, I was thinking about a way to or a word that could describe the impact that being disabled has on my work. I stumbled across bionic after I鈥檇 had quite a bad fracture a couple of years ago, and they implanted metal into my leg, and someone who visited me at the hospital had joked that I was now part woman, part metal. But it kind of inspired that journey to find this term that describes the work that I do, and that I feel that my work moves and it鈥檚 aided by my wheelchair and all the kind of accessible equipment I have at home. That even though I may not always write explicitly about disability my work is always influenced and impacted by it.
EMMA - So, you do have a play on 鲍鱼tv Sounds at the moment called Little Miss Burden. What is it about?
MATILDA - Yeah, so Little Miss Burden is a coming of age story. It鈥檚 semi-autobiographical because I鈥檝e definitely told all of my life in that story. But a very condensed version of what it was like to grow up in the 90s as a young black girl with a disability in a family where I was the only person in the family with a disability, in a very Nigerian, Catholic household. And what it felt like to have two non-disabled siblings and kind of how we mirrored ourselves as black girls on popular black girl bands; but then also how I did feel a bit not like my sisters because I had this condition. So, a kind of coming of age story of coming to terms with what it meant to be disabled, and facing some of the things that come up with disability and religion and disability and culture.
EMMA - A young black girl in London with Nigerian heritage. And you鈥檝e got physical impairments but they don鈥檛 know why. Can you tell me a bit about that road to diagnosis for you and your specific experience of that?
MATILDA 鈥� Yeah so, it took about eight years to get a diagnosis.
EMMA - That鈥檚 a long time.
MATILDA - Symptoms presented themselves when I was five and I wasn鈥檛 diagnosed until I was 13. So, within that eight-year gap it was just a lot of tests. And coming from a very Christian household meant also going to a lot of churches and my mum鈥檚 friends inviting her to different churches who believed their pastors had performed miracles or could perform miracles or could 鈥渃ure鈥� me. What that felt like growing up with the thing that didn鈥檛 have a name as well, I was often challenged about whether or not it was real, because if the doctors couldn鈥檛 find what was wrong or why I was experiencing these specific symptoms and how it was limiting my mobility then it might not be real, or that it could have some other spiritual connotations. They would pull me aside when my mum wasn鈥檛 there and ask if I was faking it for attention or, you know, I鈥檓 causing my mum a lot of distress, I should just walk properly.
EMMA 鈥� Wow!
MATILDA - And it鈥檚 just wild. Yeah.
EMMA - That鈥檚 incredible. Wow, gosh.
MATILDA - And how that sort of followed me into adulthood as well. I鈥檝e got 鈥� which I guess I don鈥檛 mind sharing 鈥� I definitely have PTSD when it comes to going to hospitals and things like that because I鈥檝e had such negative experiences within them in terms of yeah, actual harm and things done to me. And then gas-lighting that, it鈥檚 just happened because of my condition.
EMMA - How does that affect you now?
MATILDA - I remember speaking to a really lovely nurse who was like, 鈥業 need to keep an eye on you because you don鈥檛 seem the type to tell people when you鈥檙e in a lot of pain鈥�. That I鈥檝e just learnt to really bottle everything, which definitely is not healthy, but it鈥檚 kind of a response to not being believed when I was in a lot of pain or just being left or ignored kind of thing.
EMMA - And was it all together a good thing to get the diagnosis?
MATILDA - Yeah definitely. I think what was scary about it or not really understanding it for quite a while was actually what it meant. It didn鈥檛 have a name. Now it does. Okay, so what are we going to do to get rid of it 鈥� that was my mindset now.
EMMA - So, it was let鈥檚 fix this.
MATILDA 鈥� Exactly.
EMMA - And obviously your family wanted that for you as well so they were on board with that idea?
MATILDA - Exactly. It was a celebration like at church, like oh that鈥檚 God鈥檚 doing, you鈥檝e got a name for it now so now they know what it is they鈥檙e going to know how to treat it. So, there was all this hope that meant I was going to get cured now.
PLAY EXTRACT - Limb girdle muscular dystrophy, a gift I didn鈥檛 ask for and couldn鈥檛 return. [Music] Little Miss, come on down! Let鈥檚 look at all the excellent prizes you鈥檝e won: progressive weakness of the hip and leg muscles, which means walking with a waddle. Hold on, I don鈥檛 want that. Over time it will become increasingly hard to do daily activities like combing your hair, brushing your teeth or feeding yourself. The heart and lungs may decline over time, though this isn鈥檛 the case for everyone. Can I return these prizes? Fortunately for you your type of LGMD doesn鈥檛 affect sensation, digestion, bowels, bladder, sexual function or intellect. Is that a good or a bad thing? That anyone can know by looking at you, so society will still discriminate and disrespect you at every turn. Better luck next time. [Cackling and music]
EMMA - There鈥檚 a part in the play, whether it鈥檚 in your life or not, was once you knew you had a diagnosis you went to have surgery. But it felt like in the play that you didn鈥檛 quite understand what was going to happen.
MATILDA 鈥� Yeah.
EMMA - And I honestly think so many disabled children and young people can relate to that. It鈥檚 basically everyone being so hopeful and so happy that you鈥檙e going for surgery and that it鈥檚 going to fix things that you don鈥檛 quite get what鈥檚 actually going to happen.
MATILDA - Yeah, that鈥檚 definitely based on a real experience. And I think both for my mum as well, like we were both very hopeful about what was possible for this surgery. And I think at that time because I was maybe 13 or 14, so it was quite short after the diagnosis that they mentioned that they could now do this surgery since they knew what it was, but it was corrective surgery. And I didn鈥檛 know; it was never broken down to me in a way that I could understand. I just heard, we鈥檙e going to do this surgery, you鈥檒l walk properly and that鈥檚 the end of that. So, I was like oh my god, this is it, this is what we鈥檝e been waiting for, maybe there is a God, maybe this is all real. And going back to school, I only told my two friends at the time so I don鈥檛 know how it got around school that Matilda鈥檚 having this surgery and then she鈥檚 going to come back normal. And then because I had such a prolonged recovery period it just kind of built up the anticipation of like, oh when Matilda comes back she鈥檚 going to be fine, she鈥檚 going to be like us, she鈥檚 going to be able to run and take part in PE and all that kind of stuff. And I remember discovering when, other than being able to maybe stand up straighter, the surgery had improved my posture, nothing else had changed. And I didn鈥檛 want to come back. I remember it very vividly, I do not want to go back to school, I can鈥檛.
EMMA - That feels to me like that might have been the start of a road towards disabled person identity, even though the road might have been a little bit long and bumpy. Having realised that the surgery wasn鈥檛 going to fix things what happened from there?
MATILDA聽 -Yeah, I think you鈥檙e absolutely right in the sense of realising very early, well not very early on, in my teens that this thing isn鈥檛 going anywhere; that I think this is going to stick around for a very long while, maybe even till old age. I think immediately it probably made me really scared because I was like I don鈥檛 know anyone who鈥檚 got this so I don鈥檛 know what the future looks like for people with this. I was a very shy teenager growing up, and as my mobility decreased I went out less and less so I wasn鈥檛 meeting people or developing any kind of friendship or life outside of school. So, it made life at that point feel really miserable. And I think that鈥檚 probably the earliest signs that I started to experience depression, probably in my mid-teens around 15, 16. And things were progressing in the sense that it was getting harder to do things on my own and I was relying more and more on my mum.
I think what also exacerbated my mental health struggles was the fact that I wasn鈥檛 getting the support that I needed. This is someone who struggles to climb stairs, and I was in a school that had more stairs than the Great Wall of China. It was so inaccessible; what was I doing there? But oh, it was the closest school to my house. But that didn鈥檛 make it any better. There were so many things now that I look back that I realise could have helped but I just didn鈥檛 have it or didn鈥檛 know. Like I didn鈥檛 have a social worker until almost early to mid-20s so we weren鈥檛 aware of any of the support that was out there in terms of taking me to school or bringing me home. Because my mum was a single mother working several part-time jobs and having to drop me to school or pick me up or pay for taxis to drop me to school and pick me up. I think the lack of support made that even harder.
And then when I became an adult and my mental health was probably really at its worst between the ages of 18 and 21, I鈥檓 really sorry to say this bluntly, but realising how much it felt like the world hated disabled people. So, my mental health was then further exacerbated by the treatment that I was receiving from others, whether that was members of the public, whether that was hospitals and doctors, whether that was people in the church 鈥� just constant animosity at my presence.
EMMA - Were people difficult to you to your face?
MATILDA - Yes, very difficult to my face. It鈥檚 hardly ever subtle is what I would say. People genuinely saying things or shouting rude things at me, being rude to me. And then I developed a genuine fear of going out. I was like I can鈥檛 leave my house because when I leave my house people just rip into me.
EMMA - Wow. Why do you think that was the case? Or do you think it鈥檚 the case for everybody? Or was it particular situations for you?
MATILDA - I think a bit of both really. I鈥檓 sure this is experienced by lots of disabled people.
EMMA -Yeah.
MATILDA - And I鈥檇 just say maybe that what I was also experiencing was kind of ableism also mixed in with racism. Often you don鈥檛 even know why. You鈥檙e questioning why are people treating me this way, I鈥檝e not even said anything, they don鈥檛 know me, how have I offended you before I鈥檝e even opened my mouth.
EMMA - Yeah. So, how do you move forward from that?
MATILDA - Counselling, a hell of a lot of therapy, my goodness, because it was trauma. That was what I was experiencing was trauma: trauma at the hands of being horrifically bullied in secondary school and college; trauma at the hands of medical staff and that institution; trauma at the hands of church and Christianity and Catholicism. All of it was just trauma. And it didn鈥檛 really manifest in me until my early to mid-20s where I was just a wreck. I was just a wreck. I wasn鈥檛 interesting in forming relationships or friendships with people. I was incredibly closed off. Hardly went out of my house unless absolutely necessary. I was just becoming a shell of myself and my mum and family could see that.
PLAY EXTRACT - You鈥檝e been having a rough time lately. Who are you? I鈥檓 a hot topic. You鈥檒l have heard of me: depression. Now I go by my stage name, The Fade. Seems you can鈥檛 get anything right these days. I don鈥檛 want to talk about it. No worries, I love the sound of my own voice. We鈥檙e more alike me and you. And LGMD, isn鈥檛 she so annoying. LGMD has ruined everything. I hate her. Join the club, she鈥檚 so selfish. And bossy! I don鈥檛 like the way she talks to you. She acts like she was here first. Exactly! She makes me so angry. I know. You have every right to hate LGMD, your sisters, your mum, even God. I don鈥檛 hate them. Why are they normal and not you? Yeah. What did they do that you didn鈥檛? I don鈥檛 know what I did. It must have been bad since God鈥檚 punishing you. Mum said all I had to do was believe and I鈥檇 be fixed. It鈥檚 worse now. You can鈥檛 trust anything mum says; she lies to you. You can鈥檛 trust anyone. Yeah. You know what she鈥檚 really saying when she prays? She doesn鈥檛 pray for LGMD to go away, she prays for you to go away. Really? Look, if everyone agrees you鈥檙e the problem then you know what you must do. Disappear. Don鈥檛 worry, I鈥檒l take it from here. [Together] We can鈥檛 trust anyone. If the people can鈥檛 see you then they can鈥檛 hurt you.
EMMA - So, treatment was the answer, you had the right support and the right treatment?
MATILDA - Yes. I was really lucky to have this incredible physio who probably went above and beyond her actual remit in terms of pushing me to go to counselling, encouraging me to apply for housing because my housing situation wasn鈥檛 great either. My mum lives in an old Victorian house with no access, and I鈥檓 climbing stairs daily, and it鈥檚 draining me. And not just climbing stairs, I鈥檓 also falling down stairs. And I think she said to my mum, 鈥渋t鈥檚 only going to take one fall one day when no one鈥檚 around and Matilda hits her head and she doesn鈥檛 get up, so we need to move her into an accessible home鈥�. This physio was amazing in helping facilitate a lot of that.
EMMA - Was getting your independence, living somewhere else that was accessible to you, was that a turning point? I mean, there鈥檚 still a lot that goes with that if you need care and support and PAs and stuff.
MATILDA - Oh absolutely. I feel like it saved me and my mum鈥檚 relationship as well because obviously I was becoming this disabled adult, but also my condition meant because it was progressing it meant I was relying on her more. But I鈥檇 still got two younger siblings that she鈥檚 raising and she works, so I didn鈥檛 feel like I had the space to grow into an adult. It definitely put a strain on our relationship basically. And so when I was able to finally move out 鈥� and at the time I didn鈥檛 know I was going to need a care package so none of that was set in place, I was still able to do quite a lot on my own, just very slowly 鈥� it meant finding that out the hard way. But moving out was probably the best decision of my life.
EMMA - As a blind person I find my mum finds it really hard to look at me doing things a different way. And she鈥檚 like, 鈥渙h please can I do it for you? Let me do it鈥�.
MATILDA - There were so many unsafe things that I was doing in the first year that I lived alone. But, I鈥檓 not going to lie, it was awesome. Yes, they were dangerous but it meant I could stay up really late, and come home really late, and hang out with people and invite people over, and just that kind of autonomy.
EMMA - Yeah, that freedom that you would have got if you鈥檇 gone away to university.
MATILDA - Yeah exactly 鈥� in my mid-20s. [Laughter]
EMMA - Tell me a dangerous thing that you were doing.
MATILDA - Ooh, which one do I even start with? There was a really dangerous method of how I鈥檇 get into bed, and sometimes it didn鈥檛 always work so I would have to have my phone literally in my pocket in case it didn鈥檛 work so I could call my mum to come and get me off the floor.
EMMA - Oh god. How many times did you have to call her?
MATILDA - Actually I was pretty good because it was usually on my extremely fatigued days that I wouldn鈥檛 make it. But I鈥檇 say eight times out of ten I鈥檇 get into bed.
EMMA - So, what were you doing, diving from your chair in?
MATILDA - Yes, literally diving. There was one time I hit the headboard and woke up the next day sprawled on my bed. So, I hit the headboard, I must have just passed out.
EMMA - But you had a good time. And honestly several鈥�
MATILDA - I can laugh about it now.
EMMA - 鈥�people who are not disabled have hit the headboard and passed out in their first year of living by themselves. [Laughter]
摆惭耻蝉颈肠闭听
EMMA - We鈥檝e spent a lot longer on the gloomy stuff than I had intended, and I hope it wasn鈥檛 too triggering or difficult for you to talk about.
MATILDA - No it鈥檚 all right.
EMMA - The first time I knew of you as a playwright was I was invited to a reading I think of a work in progress around artificial intelligence and care. And I was like, that鈥檚 really interesting talking about robots that help with personal care and stuff like that. Tell me about that and where that came from, and about you said you only realised eventually that you鈥檇 need a care package, but you鈥檝e built that up now.
MATILDA - Yeah. It鈥檚 a huge play and it鈥檚 a sprawling play and it鈥檚 one I鈥檓 still writing. I was talking to a director friend and I was like, it feels like it鈥檚 going to be that play that I say it took me a decade to write, because it鈥檚 just constantly changing. And this pandemic has definitely revealed things about care and how I address it within the play. I initially had tried to write this play back in 2012 on a writing course. It was directly after an appointment that I鈥檇 had where the doctor had said, 鈥渋n the future she鈥檚 going to need care鈥� and I asked, 鈥渕y mum cares for me. What鈥檚 that?鈥� And he was like, 鈥渘o, as in people who will come in and provide support to help you get dressed in the morning and things like that鈥�. And he was talking about something so far into the future that scared me of the idea of having strangers come into my house or wherever I鈥檇 be living and performing such intimate tasks. So, that inspired that I鈥檇 actually prefer a robot to do that.
EMMA 鈥� Yeah.
MATILDA - And then I couldn鈥檛 write it because I had not experienced life the way that I needed to to be able to write it. And I came back to it in 2018 with another director friend of mine. And so we got development funding from Unlimited who funded an R&D for us to really explore and get in touch with people who also worked in tech and care. There鈥檚 a brilliant researcher in tech and care called Lydia Nicholas who鈥檚 just amazing. Her insights and how she was able to help me understand the different ways tech can help care or healthcare in general. The reading that you mentioned we had that just before the pandemic. That was the end of 2019. And then I was meant to spend 2020 writing it. And then the world changed.
EMMA - Yeah. So, with everything in mind would you want a robot instead of a person? Would that be an ideal scenario?
MATILDA - It鈥檚 not a straightforward answer, and I don鈥檛 want to cop out, but I definitely would have benefited from one during the pandemic. Like who wouldn鈥檛 have benefited from a robot carer? But it鈥檚 a complex question that I鈥檓 exploring in the play, that what are the sacrifices of relinquishing human carers and also human touch and human interaction if you were only left with a robot carer. It would be great to have a robot carer who could assist human carers. So, it could take instruction, could provide training so that I don鈥檛 have to always explain, who could take on all that kind of cognitive labour that disabled people have to do when they have care. I would love a robot to take that on so I have more time in my day and energy to think about other things. Someone who鈥檚 doing inventory of my meds; someone who鈥檚 doing inventory of access equipment or whatever. I think there鈥檚 a use for robotic carers, but I don鈥檛 think in the way that has to get rid of human carers.
EMMA - Yeah, you can鈥檛 really imagine robot hands manhandling you.
MATILDA - Yeah, like how would they know how much pressure to apply and things like that. But I feel like there is, in my head at least, there鈥檚 some kind of happy medium between the two.
EMMA 鈥� You know your PAs could listen to this or people who care. Is it quite hard to talk about your care and to write about your care? It鈥檚 not as hard to write about other aspects of disability; but is it a tricky one?
MATILDA - It used to be, I won鈥檛 lie. And also not just to write about; I think I genuinely used to 鈥� showing my internalised ableism here 鈥� I think I genuinely used to have a bit of shame about it. I don鈥檛 think I鈥檝e talked about my care this much since the pandemic, if that makes sense.
EMMA 鈥� Yeah.
MATILDA - Like the pandemic has somehow forced me to have to talk about my care with collaborators a lot more because the situation isn鈥檛 as easy or smooth.
EMMA - Because you didn鈥檛 have as much flexibility around what you could do?
MATILDA - Exactly. I liked the idea that people just thought I鈥檇 appear, like I鈥檇 just show up at the right theatre at the right time, or I could just make that outing or whatever, I can just meet you at the cinema. There was something quite nice of just thinking I could just appear in places.
EMMA - Yeah exactly.
MATILDA - Where in reality it takes a lot of planning and practical, strategic time management. Because I don鈥檛 have 24-hour care so a lot of the time it feels like I鈥檓 rationing hours.
EMMA - And planning and messaging and sorting and messaging and鈥�
MATILDA - Exactly. It鈥檚 like running a small business but without the profit, like running your own care package. And it takes up a lot of brain space and energy away from things that I鈥檇 rather be doing.
EMMA 鈥� Sure.
MATILDA - Like as much as I get on with my carers and they鈥檙e a great team, I鈥檇 also love to be able to just do other stuff or have the energy and time to do other things.
EMMA - It鈥檚 the mental load, isn鈥檛 it, of it all, as you say.
MATILDA 鈥� Yes.
EMMA - What did you do in the pandemic? Did carers continue to come in? What way did you work?
MATILDA - Yes, I shielded throughout, and to some extent still am, in terms of had to change all the ways that we worked. I had quite a few leave at the beginning because they knew this wasn鈥檛 going to last for three weeks. So, I was then with a much smaller team. It just wasn鈥檛 safe to recruit; it was just too risky because of how quickly cases were rising. And when I did try and recruit it was quite difficult. It definitely wasn鈥檛 as easy as I had recruited in the past, so I found it far more challenging. But yeah, I still had carers coming in and us being or trying to keep each other incredibly safe. But it wasn鈥檛 without its challenges.
EMMA - Yeah. Stressful. Pressure.
MATILDA - Yeah. I think I told someone that I felt through the pandemic more like an employer than I did someone who receives care, because there was so much that I鈥檇 had to now implement and new things that I had to keep on top of that I didn鈥檛 have to before in a way.
摆惭耻蝉颈肠闭听
MATILDA - I鈥檇 always written, and when I was younger I used to write Scooby-Doo fan fic.
EMMA - Oh love it! So fan fiction, so stories written by the fans about the鈥�?
MATILDA - Yeah, about the characters. I鈥檇 just continue where episodes stopped. I鈥檇 be like that鈥檚 not all that happens. And then thankfully the chokehold that Scooby-Doo had over me started to loosen and I fell into poetry, encouraged by my secondary school English teacher. Because that was one of the things as well, like in school, because it was so inaccessible and I鈥檇 often get really tired I started just hanging around in classrooms and teachers would just let me. And sometimes they鈥檇 forget I was in the room. And my English teacher really got me into poetry and reading poetry and trying my hand at poetry. I was like, ooh there鈥檚 something about this, I like being able to say stuff in code, being able to say something but I鈥檓 not telling you explicitly, but I鈥檓 trying to give you an impression of something. And that really I think excited me about how you could play with language. I thought I was going to do a psychology degree until I spotted a creative writing degree, and not only was it about exploring poetry but all forms of creative writing. So, there was prose, there was non-fiction, there was writing plays, writing screenplays, writing graphic novels, writing for video games. It was such a plethora, and I was like that sounds far more exciting than just psychology. But I knew my mum would never go for it so I changed my course and started uni first for about a month before I told her that I am not studying psychology. And she wasn鈥檛 too pleased. But during my time at uni there was a module on playwriting which I really enjoyed. But it was just one module, and I was like how do I get more of this. So, I started researching courses and found a lot of the theatres at the time were doing courses. Whilst I was in uni studying and trying to finish this degree I was also doing all these external courses outside of uni, and I was just trying to do as many as I could really.
EMMA - Yeah. It鈥檚 interesting when you were talking about the poetry, and I just wondered if you saw yourself in the poets. Because a lot of poets were rich English men back in the years haven鈥檛 they been?
MATILDA 鈥� Hmm.
EMMA - I mean, there are lots of cool ones now.
MATILDA - At the time we were also looking at the works of Benjamin Zephaniah and I was just like, I really like the way this dude tells stories, how is he doing this, I want to know more. And at secondary school we went on a class trip to see a Roy Williams play called Joe Guy at Soho Theatre. And again I found myself watching the play but I was also watching the audience鈥檚 reactions to the work, because I was like, how is he doing this, how are the actors doing this. The sign of a good story is one that makes you lean forward, so I wanted to understand what are they doing here, I like it but how are they doing this.
EMMA - Yeah, what are the nuts and bolts of it?
MATILDA 鈥� Yeah.
EMMA - And in terms of disability you鈥檝e written quite a bit about your disabled experience, was there a moment where you saw a disability arts person or something disability related? Or did your stuff come first and then you sort of got introduced to that community?
MATILDA - That鈥檚 a good question. I feel like it happened at the same time. I remember seeing Jess Thom鈥檚 Touretteshero backstage in Biscuit Land and just being kind of blown away. I think that was for me like a gateway. I was already exploring the idea about writing about my disability. Because in the first half of my career I could say a lot of the stuff I was writing probably wasn鈥檛 explicitly about disability, but after seeing Jess鈥� show I was like ooh, I like the way she approached the work, or I liked the way she approached her storytelling essentially. And I was like, oh I didn鈥檛 know you can do that, I didn鈥檛 know you didn鈥檛 have to be so literal, if that makes sense.
EMMA - Yes. You didn鈥檛 have to say, here I鈥檓 disabled, and this is what happened to me.
MATILDA - Yeah. Seeing that show really inspired me, because also being in a space with, I don鈥檛 think before then I鈥檇 been in a space with so many disabled people in the audience as well as on stage. So, I was like, oh there鈥檚 something, the energy鈥檚 different in here and I like it. So, I think that was yeah, like a gateway show for me.
EMMA - And being the queen of sort of hyphenated things, so like black and disabled, queer and disabled, disabled artist, what鈥檚 your experience been of having a foot in all these different communities and how you鈥檝e been treated etc.?
MATILDA - Yeah, I think that鈥檚 what shapes my lens on the world. It impacts, it shapes the stories that I tell, it impacts the way that I live my life. I think I once described it as being the outsider of the outsiders, so another layer or another level of being able to see the world and people a bit from a bigger distance almost. And often that鈥檚 fine and you find your people, you find your communities, you find your tribes. And in other times or experiences it can be quite negative. Some of the experiences I feel like I鈥檝e experienced both in the industry but also in my life in general have always been a mix of not just ableism or realising how related ableism is to racism; but not everyone always making those connections or thinking that they can鈥檛 be racist if they鈥檙e disabled or whatever. It鈥檚 a mess. It鈥檚 also very nuanced I鈥檇 say rather than say鈥�it feels like a mess but it鈥檚 also very nuanced in a sense of being a part of these different communities but still experiencing the intra-prejudice or intra-discrimination within the communities.
EMMA - And does it confuse people? I found when I was blind and pregnant it just confused people. They didn鈥檛 know which way to look at me. They didn鈥檛 know how to talk. People who didn鈥檛 know me they just got a bit confused, just got a bit flustered really.
MATILDA - Yeah definitely. And also I feel like people then are less patient as well. Like I鈥檓 someone who can鈥檛 be rushed. I have to take my time; I don鈥檛 have a choice in that. And yet when people can鈥檛 understand you just from seeing your or what have you it means they tend to have less time for you. They don鈥檛 want to take the time to understand or listen.
EMMA - Because you鈥檙e not the same as them.
MATILDA - Yeah, exactly. And they make very snap assumptions, which can often be very dangerous when people make those kinds of snap judgements on, oh well I don鈥檛 have time to take all of you in, I鈥檓 just going to say this is who you are or make this assumption about you.
EMMA - Is the disabled community inclusive do you feel? Are they more inclusive than they used to be? What could be more inclusive about us? What could we do better?
MATILDA - Yes, I definitely feel part of the disabled community. I feel saved by my disabled friends. I don鈥檛 know what I would do if I couldn鈥檛 turn to them and be able to talk about the injustices that we often have to face. But I鈥檝e also definitely noticed that the disabled community does probably have a race issue which it needs to address and unpack when it comes to, not just representation, but just understanding it鈥檚 not a competition, it鈥檚 not prejudice Olympics. Actually all our fights are kind of intertwined. All our struggles are intertwined with that of other minorities. And sometimes I鈥檝e often felt like I鈥檝e got pushed back against that, or genuinely treated differently because I鈥檓 black and disabled. We don鈥檛 need to compete, but rather we need to team up, we need to see how we can make sure the struggles that we are trying to challenge or discriminations or what have you, make sure it covers as many people as possible so that nobody is left behind.
[Music]
EMMA - I absolutely loved that chat with Matilda. And you can check out her play, Little Miss Burden, on 鲍鱼tv Sounds until 8th December 2021.
You could get in contact with us about absolutely everything, but particularly if you want to comment on this interview or if you have an idea for an episode. You can email us ouch@bbc.co.uk. We鈥檙e on Twitter @bbcouch. Search for 鲍鱼tv Ouch on Facebook. And just for a change we鈥檙e on Instagram at ouchbbc. Thanks for listening and I鈥檒l catch you again soon.