EP. 76 — Sophie Morgan

Jameela: [00:00:00] Hello and welcome to another episode of I Weigh with Jameela Jamil. I hope you’re well. I’m good. I’m a bit fatigued. Online discourse is getting out of control. Uh, a lot of infighting amidst liberals and progressives and the left in general, lots of self cannibalizing. I think people’s reactions to AOC and her dress at the Met gala were quite frustrating and not very well thought out. People speaking before they had all the information, which I’ve certainly been guilty of in the past. But if you want to hear what I said about that, you can find my rant on my Instagram. I’m not going to be subjected to it again here, but I am feeling a bit exhausted by how much time we who want to make change in the world spend nit picking each other and then completely losing focus of the greater task at hand, and while I think it’s really important that we keep each other accountable and criticize each other and and do all of the important things I think all of it literally all of our pile ons spiral out of control. And even long after the message has been made and said about the thing that we take issue with, with the public figure, we just then go on and on and on. It kind of feels like and I’ve spoken about this before in this podcast, it feels like we’re just kind of virtue signaling to each other that, like, I’m going to be vocal about this thing that everyone else has already said so that everyone around me knows that I’m on the right side of history because I object to this thing. But all that turns into is a massive cluster fuck of misdirection, because then we’re not looking at the people who are actively trying to oppress us because we’re so busy piling on to spending days obsessively talking about someone who’s actually probably got their hearts probably in the right place. And what they did probably doesn’t warrant this being a reaction. Meanwhile, those who are actively trying to oppress us are laughing at us, watching us just spend this much time eating each other alive and then they just carry on oppressing us and we’re distracted by pointing at each other. So we’ve got to figure out some sort of better fucking system here of, OK, we’re going to say something’s wrong, we’re going to be we’re going to say it with our whole fucking chest. And then when it’s been said, we’re going to move on and talk about something else rather than just kind of signal to the tribe that, like, please keep me in the tribe because I want to show you that I’m I also feel this thing that everyone else has already said a million times that individuals isn’t helped by you doing it and time is wasted and misdirection happens. So sorry. But that’s the thing that I’m feeling. Anyway, moving on, I want to talk about my excellent friend, Sophie Morgan, who is my guest on this podcast this week. And she’s someone I’ve known and worked with over the course of the last kind of eight years. We lost touch for a while when I moved to America, but I’ve been watching her career from afar and just continuing to see her soar and and teach so many people so many things and also teach herself so many things. And so because I got to be a guest, I was very lucky to be a guest on her new podcast, Equal To which I really want you to go listen to, especially if you are interested in the subject of disability and we all should be. And the last year and a half has taught us anything. There is no guarantee that that will not come into your life at some point. And so you should be fucking educated about it because that doesn’t just make you a good and informed and and better person, but also that’s the right way to live and it’s a smarter way to live is a life prepared for all of the shifts that we, I think now have been given explicit proof can come with no notice and we have no idea how long it’s going to last. This podcast she hosts is with Sinead Burke. You can you can listen to it anywhere that you get your podcasts. And it is truly, I think, going to be a leader in the conversation around disability. It’s just a sort of mini series. But each episode is so potent and they’re so unpretentious and warm and funny and smart and integral and you just learn so much. And they come at everything from an angle that you maybe hadn’t considered before. And it just doesn’t feel I think what I love about podcasts is that you have the opportunity to kind of learn and probably that this is a very punishing world where, you know, as I was kind of referencing to earlier, were very performative and were very afraid of getting things wrong and being seen in a certain way and being seen as not doing enough or not knowing enough, not being perfect, especially for women or people of color or any kind of minority, or combine the intersection of them all. Thought you can tell I’m a bit frustrated, but I think that this this podcast that I host, the Equal To podcast hosted by Sophie Morgan, I think podcasts like that do a really good job of just letting you feel like it’s OK to not know all of the answers yet. None of us are mad at you. I mean, I’m learning right in front of you with you all of the time. And so that podcast does a great job at just kind of giving you this introductory session in very accessible language, in very accessible ways, with very accessible and sensible and and exciting prospects. And so I really want you to listen to it. Sophie is a model, a writer, a TV host, a documentary maker, a really, really profound and well respected activist and truly just one of my favorite humans on Earth. She’s such a great speaker. I think a lot of people became aware of her when she joined Britain’s Missing Top Model, which is a kind of iteration of Britain’s Next Top Model. And it was a show where women with disabilities were competing to be the winning model. She was a runner up on the show and it kind of just shot her into the mainstream in the United Kingdom. And it was around then that she and I met and started working together. She’s had quite a life. She was 18 when she became disabled, and we talk about that and that transition from going from being nondisabled to disabled and what that did to her life, we talk about the upside of disability. We talk about representation. We talk about the things that we wish nondisabled people knew about people with disabilities and all the ways in which they don’t have to tiptoe around them. We talk about her visible disability as she is in a wheelchair and my invisible disability, which is, you know, also there’s not enough representation of either in this world. And we talk about how those things have shaped us and and the frustrations we have to the world. We talk about the 2028 Paralympics that are coming to Los Angeles, which is the hub of representation. And Hollywood, as we know, which is in Los Angeles, erases the living shit out of people with disabilities. They feel like just because they’re somewhat racially inclusive and they have about three famous trans people now whatsoever, that they’ve done the work. They’ve represented everyone. They can rest now and go back to making all white, cis, straight, nondisabled TV shows. They never seem to remember to bring up the fact that we still don’t have almost any disabled representation. It’s so minor. You can name these people on one hand and so and and and often the roles that are about disability go to people who aren’t disabled and we talk about why that’s problematic. It’s a totally jampacked conversation and it’s one that just made me feel so energized afterwards and so galvanized to do more, be more, be better, be a better ally, not just to people with disabilities, but also to myself as a sick person who doesn’t always cut myself enough slack. So I hope you find it interesting. I think this is a conversation that doesn’t just need to be heard by other people with disabilities who are looking for solidarity. This is absolutely for you, but it’s also massively for those who haven’t yet experienced disability and any kind of iteration, you will learn so much. You will expand so much not just in this episode, but from everywhere that Sophie kind of leads us to go to explore. It has been one of the great parts of my life, learning from, learning with and loving with the disabled community. And I feel so grateful for people like Sophie to lead the way. So this is the excellent Sophie Morgan. And for those of you who don’t already know her, I’m so excited to introduce you to her. Enjoy. Sophie Morgan, welcome to I Weigh. How are you? [00:08:40][520.5]

Sophie: [00:08:41] I’m really good, how are you? [00:08:42][1.4]

Jameela: [00:08:43] I’m so good. It’s so nice to see you. I have known you for such a long time and looked up to you for such a long time. And I’m so honored to have you on my podcast. [00:08:53][10.3]

Sophie: [00:08:54] Oh, don’t. It’s just we’ve had such a history, haven’t we? What an adventure we had and I’m trying to remember what it was we worked together, what year it was. It feels like another life. [00:09:04][9.4]

Jameela: [00:09:05] Two thousand and thirteen until 2015. So, it was awhile ago. [00:09:10][4.6]

Sophie: [00:09:10] You know. [00:09:10][0.2]

Jameela: [00:09:12] Oh yeah. Big time. Those are the Sophie years I refer to as the Sophie years. Our era. [00:09:18][6.9]

Sophie: [00:09:19] It was. Why not. Why not. It was an amazing experience wasn’t it. [00:09:23][3.4]

Jameela: [00:09:23] Yeah, it really was. And I think that the reason that we sort of fell in love so fast is because we are very similar people and that we’re really just scrappy where we know that the system is set up against us in different ways and some of the same ways. And we both have just kind of committed to a very tricky life of just grabbing what we can while we can and going for it, and I think you’ve been a big inspiration to me to just keep doing that through life and and never doubting myself like you have this innate fearlessness to the way that you take on your advocacy that just never ceases to blow my mind. And so I look to you constantly as someone who reminds me to do more, to be braver, to be scrappier. And thank you for that. [00:10:14][50.6]

Sophie: [00:10:14] Thank you for that. Wow. I honestly, I thank you. I, I think that that’s what we have to do. Right. We have to we have to fight. I wish we didn’t have to fight, but we don’t really have much choice, especially with disability. It’s just you know, I remember when I was first injured all these years ago, so I was I had a spinal injury when I was 18. And I remember I was the first disabled person that I had ever met. And I remember meeting myself and just being so confused as to what on earth this disability thing meant. I was like, what is this? So I can’t do anything right. I mean, disabled people can’t do anything. And I had no idea of what the limitations were. I just had this preconception of what disability means. And I realized very, very early on that the only way I was ever going to be able to survive, let alone thrive, was to fight was literally just to fight. It’s been a fight for 18 years. God thinking of it like that, it’s exhausting. But it’s what we gotta do right? [00:11:11][56.3]

Jameela: [00:11:11] It is exhausting. It is exhausting. And I, I would love to talk to you about that more, because I think that that’s, you know, in the last year and a half, I think more people than ever before in general, for generations have started to deal with the idea that, oh, shit, this could happen to me. Like I could develop long covid I could I could die. I could develop a disability. I could not be allowed out of the house. Everything could stop being accessible to me. Just just like that. Just like that. You’re right. You’re right. And so I think that this is a really important time to make sure that we seize this moment of people starting to wake up to this and really make sure that we don’t just brush this under the carpet and go back to quote unquote, normal. I was nothing that was not normally whispering our heads in the sand and leaving ourselves entirely unprepared. You and I both. I was just turning seventeen when I had a car accident. And I and I remember how fast it changed my life and how quickly it altered my perspective and made me realize, God, I have no control, we really have no control. And I was so unprepared for it when it happened. And so I would love to talk to you about what that experience was like going from one to a normal. Like what was your life pre that accident and then how did it change? [00:12:35][83.5]

Sophie: [00:12:36] So life pre accident, sort of almost. It’s almost my life was severed in in it quite neatly, weirdly, between when I was a child and when I was an adult. And I lived my childhood all my girlhood as a non disabled person. And I have lived my adult life as a disabled woman. It’s taken me a while to say I’m a grown disabled woman. I grappled with my disability for the last 18 years. But now I’m an 18 year old disabled woman. I feel like I’m a bit more grown. But yeah, I definitely I, I, I shifted from a very free and wild and quite rebellious. I was I mean I was just a pain. I think I was one of those girls that really hadn’t struggled. I hadn’t really come up against too much, you know, difficulty in my life. I just sort of floated through. And yeah, I’ve been a pain in the ass at school. I’d been kicked out of the school in that school, and I’d been a bit of a dickhead. But I had actually just sort of fumbled my way through and got through OK and then suddenly I had a car crash. The day I got my A level results, I was coming home from a party, lost control of the car I was driving. I was sober and I was seat belted, but I was very unexperienced. I lost control of the car I was driving and I was instantly paralyzed. So I, I kind of woke up and had to come to terms with a number of things. I think the same issues that we all have to come to terms with when we’re coming of age, when we’re trying to work out who we are and where we want to go, what the fuck we want to do. I had all of that going on, but then I had this other layer where I had suddenly become a different type of woman. Suddenly I was confined to the expectations of what people had around what paralysis is and what disability is. And I had to fit into that very limiting perception. So there I came out into the world as a wheelchair user and it was really hard to think as an 18 year old girl to to figure out myself amongst all of it. And yes, but it’s been a journey. But I really one of the things to your point about this whole, you know, life can change in an instant, is that I don’t want this to be a story of tragedy. And I think that’s something I always see with disability as it’s like. [00:14:54][138.3]

Jameela: [00:14:55] But that’s what I’m saying when I say that we’re unprepared. Right. Is that these big changes might happen. Yeah. And I consider my life obviously in some ways harder for my disability. I have an invisible disability, but I also like I love my perspective in the world. I find I find the world easier to cope with in so many ways for what I’ve learned from it. So I never meant that in a bad way. I just learned that we are underprepared for these huge, huge shifts that can happen to us or to people that we love. And if we were ready for it, if we were readier for it, at least then it wouldn’t seem like this terrible shock and trauma. It would just be a new thing to navigate that we feel a bit safer in. [00:15:34][39.0]

Sophie: [00:15:34] I think that’s exactly right. You know, we we I think we need to normalize, change and lean into change in a way that. Yes, okay. No one would want to necessarily wish a disability upon someone. But I think we need to shift that narrative around it being the worst thing that can happen to you. And I feel as well. That’s a hard thing to say. It’s taken me a long time to get to that point. But I think in the context of what we’re talking about here and the urgency to have this kind of shift in thinking around what disability means and what change can mean and how, you know, life can change in an instant, I think the urgency is now because we’ve just seen it all happen to us. In a way when Covid happened, I watched a little bit and I know a lot of my disabled friends watched going welcome to our world. Hello, people. You’ve been you’ve been you’ve experienced what it’s like to be immobilized. You’ve experienced what it’s like to have your agency taken away from you. You’ve experienced what it’s like to be fearful. These are some of the ways in which we live our lives all the time. You know, disabled people. That’s our life. So welcome to it. And not that I’m saying I want that to last, but what I do hope we find is that when we go back to normal, which we don’t want, nobody wants normal, we want a better normal life, is that we learn from it and we find, OK, that’s what it was like to live like that. So what can we how can we come out of this with a greater empathy, have a greater understanding? But, you know, something that’s really worrying me is the optimists or the people like you and I who have gained from change or have changed for the better from change. Look into this situation and go, yeah, OK, we’ve got something, but we’ve got something here that could be this great catalyst and a great learning. And we can and we can come through it better for it. But I worry. I really worry. I… something about me keep seeing the way in which we are talking around disability and the deaths around covid is that people have died and people have gone. Well yeah. Because they had an underlying health condition. Right. And it’s almost like this. You think that’s OK. You think that excuse is what’s happened. You think that that’s OK, that the world is now looking at what’s happened to disabled people or people with long term health conditions who have been so disproportionately impacted by covid and just kind of brush under the carpet and go, oh, well, that’s just them that’s been hurt. That’s just them. And we’re going to move on and we’re not seeing us all come together. And all those hopes that I had that we could learn from covid and we could grow together in a better way. I’m starting to get a bit worried, I suppose. So that’s why it’s so exciting to talk to you now. And I feel there’s this urgency to have these conversations and say, you know, we we we must do better. We must do better. We must listen to each other. We must learn from our mistakes and we must, like, kind of lean into these consequences and shift them where they’ve not been. You know, the conclusions that we’ve drawn are wrong, if that makes sense, and [00:18:25][170.8]

Jameela: [00:18:25] I know it makes 100 percent sense and it’s something that I feel very passionately about. I mean, this is something I’ve been working in the area of for almost a decade and. Yeah, and, you know, so have you for longer than that even. And I think it’s so important that we just you know, so much of our so much of society is rather discrimination against any group in particular, let’s just say with disabled people right now comes from fear. And we fear what we don’t understand. And so if we continue to make disability this taboo subject, that’s just too untouchable, too uncomfortable, too sad to talk about, then we’re never going to fucking learn anything. And then we’re never going to understand that it’s not all sad. It’s not this tragedy that the media lied when they told us in every single film about a disabled person played by non disabled person that we aren’t the sad story line arc in a non disabled person’s life. We aren’t this grumpy tragedy who they fall in love with. And then we go and selfishly die of our disability. And then they’re heartbroken. You know, we are we aren’t we are protagonists of our own stories. You’re you’re a hero, not just of your own story you’re many people’s hero. You’re one of my heroes. And so we need to be able to this isn’t like a no, I don’t know, like have the. [00:19:49][83.6]

Sophie: [00:19:50] We need to rewrite the ending. [00:19:51][0.9]

Jameela: [00:19:51] Negative side, like affirmative action here, like, we’re we’re trying to say that we not even rewrite like we we need to tell the real story. [00:19:57][5.7]

Sophie: [00:19:58] Yeah exactly. [00:19:58][0.1]

Jameela: [00:19:59] Not like bullshit like like a sort of tragedy. Born of a nondisabled writer. You know, who fears disability so much that they’ve all they’ve turned into I don’t know, like the equivalent of an alien invasion. It’s something that happens to everyone around. It’s there’s no lived and loved and sexy and heroic experience even like still to now, it’s so revolutionary and rare to see anyone with a disability cast in a role that just allows someone to just live. Where their disability isn’t the focus of their entire fucking experience. And everyone around them’s experience. A lot of my friends with disabilities just move on. They just get on with life and everyone else gets on with life around them. And there are certain adjustments. But fucking look at the last year and a half. It’s just been a year and a half of constant adjustments, regardless of your health status. [00:20:48][49.6]

Sophie: [00:20:49] Yeah, I know. And I think this is the thing I think this is where we could like we’ve got too great we got a great opportunity here to learn from the disabled community, to pluck and mine those resources that we have harnessed. And we have practice and we have honed these skills of resilience, of imagination and creativity that we have to live with and we have to sorry we have to as disabled people, I feel we have to constantly be living with those skills or be practicing those those skills so that we can just survive in day to day life. Right. We we have to be creative. We have to be resilient. We have to be constantly using our imaginations just to get through. And I think people who are nondisabled don’t realize that there’s so much they can learn from the disabled community in that respect that it’s like that. But I also, to your point about representation and the way in which we we see these polarized depictions of disability nonstop. Right. We’ve got the poor pitiful. It’s tragic. Oh, God, fuck that. I would rather die. And I’ve had people say this to me. I’d rather die than be paralyzed. I’d rather die than be disabled. You know, I’ve had that I’ve had those conversations [00:21:57][68.5]

Jameela: [00:21:59] Who the fuck said that to you? [00:22:00][1.1]

Sophie: [00:22:00] Oh, this fucking this kid I was we were doing I was doing a documentary about young drivers and about how young drivers, because I was paralyzed in a car crash and I was trying to tell these young kids, like, just be careful. You don’t your brain’s not fully developed till you’re about twenty five. So the risk assessment is not quite there. So be careful when you’re fucking driving. And this kid, I said, you know, because the consequences are real, you can live with the consequences of your actions for a long time. And he was like he just looked at me and he was like, yeah, I’d rather fucking die than be paralyzed. [00:22:27][27.0]

Jameela: [00:22:28] Oh, my God, [00:22:29][0.5]

Sophie: [00:22:30] no, seriously. And I, I remember at the time I was like, yeah, well, let’s let’s hope let’s just hope you don’t have to learn the hard way here, because I just but this is something that I’ve come to terms with is I’d rather he said that to me out out loud. You know because then I can I can counter it. And I, I think a lot of people think it. I’m I honestly do. I think people do think that around disability. And I, I’d rather people said it or articulated it so that we can debate it and we can say, okay, so why what do you think so bad about my fucking life? I, I love my life. I live my life. Like what on earth are we doing here? Where’s the where’s the miscommunication? Where what do we need to teach each other and have those lean into those conversations? I just I revel in those conversations. I think we need to have more of them because there’s that side of it of like, fuck, I would rather die than be you or there’s the holy shit you’re so fucking inspirational, I couldn’t you just motivate me and honest to God, if I get one more comment after just a picture of me sitting on my motorbike going, God, your inspirational and I it’s that age old thing that we just get fucking haunted by youre inspirational [00:23:36][66.1]

Jameela: [00:23:37] All the deifying and like oh what a saint [00:23:38][0.5]

Sophie: [00:23:39] This is it. And so you got these two polarized opinions and then in the middle there’s us, there’s normal fucking people just living normal lives. But I know I contradict myself because on one hand I say we’re just normal people. But on the other hand, I’m like, there’s no such thing as normal and disabled people are extraordinary. The people I have met who have got disabilities in my life blow my fucking mind. You know, people like you, people like Eddie Ndopu, people like Sinead Burke who I just had the privilege of working with these people who are I think they are just extraordinary. I think they they have they have something about the way that they live on the margins, but they look in and they see the world in a different way. And I just can’t get enough of them. [00:24:21][41.5]

Jameela: [00:24:21] But they’re also very normal, flawed people out there. I mean, I’m the most flawed of all but like I but people with disabilities can be bad people. They can be all kinds of different people. We are just like any other group on earth, not a monolith and and impossible to just be like defined. [00:24:37][16.1]

Sophie: [00:24:38] God, honestly, I remember the first time someone said to me, you can be a real bitch. And I remember saying, well, fuck, yeah, I can be a bitch. And honestly, it’s because they thought I was a wheelchair user. They were like, I didn’t know wheelchair users can be bitches. It was really shocking. I remember just thinking, here we go. Here we go. Let’s break down these stereotypes. Yes, I can be a bitch, but [00:24:57][19.3]

Jameela: [00:24:58] yet again, it is media representation. So why are like some stereotypes even just about you? Like what are things that counter that are there about you that counter the narrative other than the fact that you’re a bitch, but seriously, like what happened throughout your life that people wouldn’t expect to know about your life? [00:25:17][19.0]

Sophie: [00:25:19] That I have fear. That I am, that I, I have a sexual drive, that I have a love for drum and bass music. I love to rave. That I am an artist at heart, that I’m a painter, and that I live by myself. I drive a motorbike. I don’t need a carer, that I earn a lot of money and I am my own boss. I mean, I suppose all of these things have been things that people ask me about, so they fall off the top of my head. I think this list could go on for a long time, but these are some of the questions I get asked. You know, can you drive? [00:26:00][41.7]

Jameela: [00:26:01] You’ve had love you’ve had friendship, you know what I mean? [00:26:03][1.5]

Sophie: [00:26:04] Honestly, all these things, I think it’s easier. I think it’s shocking how but like to the point I made about this when that man honestly said to me, I’d rather die than be you, I feel those are the implicit feelings that people have around disability. They’re just never explicit. They never say them out loud. But then you get these funny little micro aggressions where you hear someone say things like, oh, is that your carer when you’re with your mate in the bar or are you traveling on your own? It’s a real thing. [00:26:34][30.2]

Jameela: [00:26:34] Oh, my God. Or speaking louder to you or bending down to your wheelchair. Are there things that you really want people to know, like non disabled people in particular, about how they approach? Because I feel as though any time I introduce like a friend of mine, if they have cerebral palsy or, you know, whatever, if they’re in a wheelchair or whatever, might be a speech difference. But the other people I introduce them to, even like my sort of emotionally intelligent, socially conscious, like liberal friends, they don’t they they malfunction. They don’t know what. They don’t know what to do. They don’t know how to act. And they start like almost like minding their language. Do you ever find this where people, like, aren’t just fucking filthy and rude in front of you as if they’re like these like saint virgins who don’t use the F word and have never heard, like, they’re just offended by all of this. And you can’t talk about filthy sex in front of them because they’ve never had any, according to you. So what do you want people to know? When like and how do you wish people would react? What would what do you want them to know? [00:27:43][68.1]

Sophie: [00:27:43] OK, I guess this is one of those things that I almost like. If I could go back in time and meet myself when I first had my injury and I first had to come to terms with what I was and who I was, and I have a high level spinal injury and so I’m paralyzed from just like the boobs down and I have to use a wheelchair all the time. And what would I want her to know that I know now is exactly what I would love other people who don’t have any kind of friends with people with disabilities, although I do find it quite hard to believe, because when you look at the figures, one in five in the population. 15 percent of the global population identify as disabled, so I do feel we know more of each other than we may let on. I just say put that out that. So I’m going to answer your question first, which is I just wish we could all have the confidence to to speak to one another, how we want to be spoken to. And literally, I think what we need to bear in mind is that difference between that when we ask questions of each other, which I think curiosity is wonderful and I think it should be encouraged. But there’s we’ve got to remind ourselves where the intention of what we might say might have a different impact on how it’s felt. So, for example, about, you know, someone says to me, oh, are you traveling by yourself? I know that that’s a question that’s just that’s just trying to help me. But it’s actually quite a loaded question of like, do you not think I can travel by myself? So there’s a softness there that I know is really hard to navigate. But I feel we just need to be gentle with each other and be kind to one another about how, you know, I know people want to know more. I know they want to do they don’t often come from a place of harm. I don’t feel that’s the case. [00:29:28][105.1]

Jameela: [00:29:29] No truly it’s just ignorance or fear. [00:29:31][1.8]

Sophie: [00:29:32] Exactly. Exactly, babe. And I just think that’s where we’ve got to go. So anyone who’s listening to this who feels that they don’t quite yet know or they want to be a better friend or an ally or anything for a person with a disability, I always think just ask the question of is it okay? Can I ask you these things? Is it appropriate for me to ask you or can I help you? It’s that I think it’s the way you the way it’s spoken is is so important. By the end of the day, we’re just fucking human. We’re all just human and [00:29:59][27.5]

Jameela: [00:30:01] Don’t treat people like they’re going to fucking break. [00:30:01][0.0]

Sophie: [00:30:03] Which is the same to your point about that whole thing of like, oh, she’s a virgin saint. It’s like I said, when I first I remember these people when they were like, oh, my God, you can you swear? And you can be a bit of a bitch. I’m like, yes, because I’m a human being. And these are the things that disabled people are with a full spectrum. So I think that that I hope that answers the question. It is a hard one. But at the end of the day, I will also put this out there. If there are people listening to this who really don’t know how to do it, ask just fucking ask. Ask me. Ask us. That’s what social media is for. We have a we have a tool out there to engage with one another and let’s use it. We have this real thing that disability advocates are so aware of is that there’s a lot of people who don’t want to disclose their disabilities. For loads of reasons and I would never shame anyone about that if you don’t want to talk about your disability. It’s hard and I get it’s complicated. But the reality is there are far more of us than we think and we are grossly underserved and grossly underrepresented. And so there’s big campaigns kicking off at the moment. And I feel really encouraged because a lot of these campaigns are speaking to this point that there are more of us than we realize. And we’re coming out. We’re not holding back. So we’ve been using the Paralympics. I say we I’m talking about a global community of disability advocates who are really galvanized to keep moving forward. And let’s not get left behind because disability, as so often the thing that people forget about. Right. [00:31:32][89.3]

Jameela: [00:31:32] Well there’s also a tendency to be like, well, we’ve done a thing with disabled people now, so we’re good for four years and we’re ticked that box. And now there’s nothing further to achieve. We looked them in the eye for a day and now we can sleep at night yeah. [00:31:47][15.0]

Sophie: [00:31:48] We clapped them and put them on telly for five minutes and it’s great, but it’s not enough. And we need to use the Paralympics, for example, as you just mentioned, or any of these sort of tick box exercises fine, but we need to use them as platforms and make them into something bigger. [00:32:00][11.5]

Jameela: [00:32:00] Yeah gain momentum. [00:32:00][0.2]

Sophie: [00:32:00] Exactly. And I think so it’s exciting to speak to you now, because I think globally we’re going to start to see some changes that we have been working towards for obviously for decades. But I think there’s something going on at the moment. There’s the way the #WeThe15 campaign, there’s the podcast I’ve just recently worked on called Equal To. There are groups that are motivated and mobilized and really excited about kind of progressing. And I think we’re on the precipice of something really, really exciting. And it’s disability led. Nothing about us without us. There’s a lot of disability kind of led organizations and DPOs that are coming together and [00:32:39][38.6]

Jameela: [00:32:39] Are great voices like yourself Ade Adepitan and like Imani Barbarin like so many great people, Lolo Spencer, so many people who are so extraordinary. [00:32:49][9.3]

Sophie: [00:32:50] Exactly. Isn’t that amazing? I mean, we could sit here and we could list. I think we could go on for a long time. That’s awesome. And also they they’re from different groups of it’s well, you know, there’s an intersectionality to that kind of representation as well. And I feel so excited about the voices that are coming up. And so, again, it’s the optimist optimist in me. I just think that we’ve come off the back of the pandemic. There’s a lot to learn. There’s a lot to do. There’s a lot of things that we got wrong. But disabled people are not going to be quiet. We’re not going to go just fuck off and just say, you know what, help us. I think a lot of people are going, no, we’re going to help ourselves. Of course, we need allyship. I mean, gosh, who doesn’t? But I feel that we’re gaining we’re gaining our power. We’re stepping into our power. Eddie Ndopu said recently, he’s like disabled people are fucking grown, we are grown. We want agency get to know us in all of our sassiness, boldness, messiness, rawness in all of us. Get to know us. We’re here. We’re not going anywhere. [00:33:47][56.7]

Jameela: [00:33:47] No. And like you and I, I’d love to talk to you about your podcast in a second, I was a guest on it and I was talking about just my frustration. [00:33:54][7.3]

Sophie: [00:33:55] Thank you. [00:33:55][0.1]

Jameela: [00:33:56] Oh god thank you it was so much fun. It’s a podcast called Equal To and you host it with Sinead Burke, who is also an extraordinary activist advocate, um, and and human being who, again, I think a lot of us really admire and love from a distance and up close. But this podcast, I was a guest on it and we ended up, you know, you got me you worked me up. I got into a bit of a rant. Yeah. A big fucking rant. And I was talking about the fact that I can’t believe that a you know, a year and a half this last year and a half has proven to us that for all these decades in which we told people with disabilities, oh, I’m sorry, we can’t hire you because you can’t work from home and our building isn’t accessible. So rather than us make our motherfucking building accessible or make an allowance where we can find an infrastructure from which you can work from home, we’ve just denied everyone that access. All of my friends with disabilities have had such a horrifying amount of pushback in trying to get employment. And I mean, my friends are so they’re so qualified, so smart like people who are who grow up with any kind of sickness or injury or like anything like that. Like that. You have to work harder for everything than everyone else. Right. So you normally come to the come to the table like overprepared if anything else. [00:35:17][81.8]

Sophie: [00:35:18] I agree. [00:35:19][0.6]

Jameela: [00:35:20] I’ve overcompensated for the fact that you’re afraid that your disability is going to hold you back. So therefore you you work way harder than anyone who doesn’t even have to have that in their mind. You don’t take anything for granted the way someone who’s never lived with a sickness or disability has. And so so they haven’t been hired. And I’m like, you are overqualified for all of these jobs. And I’m watching people who were just sort of like fucking about. Like sort of half assing this, just marinating in their own mediocrity, going in for these jobs and and getting them. And so now the last year and a half has proven to us that the whole fucking Hollywood ran from home. The motherfucking governments around the world ran from home. Biden zoomed his election campaign from his house with his dog. [00:36:05][44.6]

Sophie: [00:36:07] You’ve gotta laugh, just you’ve got to laugh, because otherwise you’re fucking crying. [00:36:08][0.8]

Jameela: [00:36:08] It’s unbelievable. But I think that’s kind of why. But I think that’s kind of why this movement is gaining like momentum now, because it’s like, oh look well, fancy that. [00:36:17][9.2]

Sophie: [00:36:18] Yes, exactly. [00:36:18][0.4]

Jameela: [00:36:20] All of the lies that we told each other and ourselves haven’t come true. And it turns out everything is completely possible. Everything is so much more possible. And now everything’s going to have to become more accessible. And people wear masks as a norm and they are considerate of one another’s health, not just their own as a norm. People think all the time about their their health, public safety with having to become obviously some people just refuse to. But we are having to become a more thoughtful generation. [00:36:50][29.9]

Sophie: [00:36:52] I think we’re adjusting yeah. [00:36:53][0.4]

Jameela: [00:36:53] And change our lives to do so. And so I do think this is a perfect a perfect moment in time for this shift to happen. [00:36:59][6.4]

Sophie: [00:37:00] I think so, too. I think it’s almost like the perfect I mean, it sounds it sounds the wrong way to say this because of all the tragedy and because of all the shit that’s going on. But it’s like the perfect storm because we’ve got a climate of awareness, a generation that are more awake. We’ve got we’ve got representation increasing. We’ve got we’ve got better visibility. We’ve got stronger leadership. I don’t mean in the places that really matter. Perhaps we still don’t feel there’s enough disabled people in the room with it where it counts. But we have gained power in the places where we can. We created spaces where we can. And so I feel like things are coming together in a way that maybe we haven’t had before. There’s there’s more ingredients in this recipe for success. And that’s why I I’m hoping I just want to stay hopeful that we’ve learned so much and we’re coming through stronger. And so so the podcast that we’ve just created, which so the podcast is called Equal to, which is taken, it took inspiration from metoo which the hashtag me too and it’s equal to because actually there was this sort of idea like, when are we going to get equal to when are we going to be equal, when are we going to find this? And so it’s a conversation starter this podcast, what we did is we broke it down. The first episode is to sort of give a bit of context around the Paralympics and the story of the Games, but then it breaks down into the next five episodes of right where the biggest and most important areas of our lives as disabled people. And what do we need to think about and where are we at? Let’s take a check, let’s check and let’s think about where we want to go. So we are some quite big questions and we brought some quite big voices in and we just said, right, where are we at? So we’ve got we’re looking at law. We’re looking at representation, which is the episode that you fed into as well as the law and the change agents. We kind of merged a bit into both there because they crossed over advocacy work, really crossed over with representation work. [00:38:46][106.1]

Jameela: [00:38:46] Also because I wouldn’t shut the fuck up. So you probably had to. [00:38:48][1.9]

Sophie: [00:38:48] To sprinkle you a bit everywhere. [00:38:49][0.9]

Jameela: [00:38:51] Sorry. [00:38:51][0.0]

Sophie: [00:38:52] No, don’t you dare say sorry. Bloody fuck, it was brilliant. And then and then, yes, so then we looked at access and then we looked at employment and then the final episodes, a bit of a chit chat between Sinead and I and some other voices where we’re just like, right, so what did we learn, what did we learn? And in many ways this podcast was just designed to be a trigger, to be a conversation starter. But the thing that was really powerful about it is what I think you achieve with your podcast is this wonderful platform where you bring in voices from all different parts of society, people who are fighting in their own worlds for their own issues, which, of course, is right. But what happens if we cross over? What happens if we bring people that, you know, people like Sinead who are moving mountains in fashion and how do we get her into employment? And, you know, how does she help the valuable 500 as a campaign and how valuable? [00:39:42][49.7]

Jameela: [00:39:42] What’s the Valuable 500 campaign? [00:39:42][0.0]

Sophie: [00:39:44] The Valuable 500 is, I think one of the most important campaigns that we’ve seen in recent times. It’s set up by the most extraordinary woman called Caroline Casey. And Caroline basically has created a group of 500 of the biggest companies that she possibly can to sign up. So we’ve got I think she’s got on the list and everyone from EY to Tommy Hilfiger, I mean, huge, huge, huge, huge businesses. And she said, we’ve got to get disability on your agenda. So this is not about a tick box exercise. This is about how are we going to see trickle down? How are we going to see people who you employ? Actually like people like, you know, Unilever, people on the ground who work from entry level jobs all the way up to the boardroom. We need to see representation. So Valuable 500 is encouraging that conversation and enabling people with resources and skills, and they’re just fantastic. So when you see campaigns like that working, when it whether that’s with business, but then you see other huge voices like we’ve talked about Eddie Ndopu already, who is one of the advocates for the sustainable goals for the UN. You know, you bring these voices together and it’s almost like being in the room when that happens. It’s you feel like, wow, the world tectonic plates are just shifted. The world is never going to be the same again when you bring these voices together. And that’s what we we need that, you know, that kind of the powers coming together. And I think that’s what the podcast was really powerful for so I’m so excited to get people to to engage with it, listen to it, have a think about what they’ve learned, contact us, get involved with the hashtag, all that sort of stuff, and really just trigger a conversation around what do we want next for our movement? Where do we go next with our story? It’s in our hands. What do we want to say? [00:41:27][102.8]

Jameela: [00:41:28] Where do we go next? What do we want to say? [00:41:30][1.6]

Sophie: [00:41:30] So the conclusion that I think we slightly lent towards is that the most important thing that we can do is get disabled people into employment. Now, there’s loads of complications there. [00:41:40][9.7]

Jameela: [00:41:41] Amen. [00:41:41][0.0]

Sophie: [00:41:41] But that would be [00:41:42][0.6]

Jameela: [00:41:42] but not as many as we fucking thought. [00:41:43][1.3]

Sophie: [00:41:44] It shouldn’t be that fucking hard. Exactly. Exactly like you said. So so there’s that right. But if you think about what that will mean, that will mean we no longer need to go. Knock, knock, knock. Excuse me, Mr. Boardroom, please. Can you can think consider, you know, putting disabled people in your marketing, please. It would be really good. You speak to a certain demographic and there’s a purple pound, by the way, and all this sort of shit that we have to do [00:42:04][20.3]

Jameela: [00:42:05] just in case you in case you haven’t heard that terminology before, purple pound is kind of like the spending power of the disabled community. So it’s the same thing. Like there’s the plus size pound, like all kinds of different things where, you know, I think a good example sometimes is when we talk about stuff like like a film like Black Panther or Crazy Rich Asians. When you see the success of those films, they take a chance on a film that represents a minority that hasn’t been represented. It’s a funny we call the minority, a lot of these people at the billions of these people around the world. But when it comes to representation, they are the minority. We we represent them. And a lot of the people who, you know, plenty of people who aren’t from that minority, but so many of the people from within that minority have been waiting to be represented, come out in the millions to support, and then you realize, oh, shit, that’s really profitable, and then you keep doing it. So that’s an example of kind of, you know, I mean, like the ethnic pound almost. When you talk about the purple pound we just mean that, like, if you were to let, like, create we were talking about this again, I think on your podcast. But when I was trying to create more access in venues around the world so people with disabilities could go to gigs, this was like, what, 2012, 2013? So to be able to go to gigs and not be like just kind of cordoned off to the side, separated from their friends and family, kind of like treated like a hindrance, I would be told every time by all of the biggest venues that, oh, well, we don’t have enough disabled clientele to justify the reparation costs of adding ramps and handles and creating a disabled toilet. And it’s like, well, if they can’t get in the fucking building, how how do you expect them to be able to become your clientele? And then have you justify this reparation costs? It’s just like the chicken and egg kind of catch 22 nightmare. And it’s like, well, if you were to allow them into the building in the first place, if you were to create those those adaptive circumstances for them, then you’d find that there’s a huge spending power. You’re just denying yourself business when you exclude any minority, especially when they exist one in motherfucking five. [00:44:12][127.3]

Sophie: [00:44:14] This is exactly the point. it’s like banging on the door saying hello? [00:44:16][2.0]

Jameela: [00:44:18] It’s like burning cash, don’t even do it to be a good person just do it to not be a twat. [00:44:20][1.6]

Sophie: [00:44:21] Exactly. And we’re like, literally I mean, you and I have had the same conversation. I mean, that’s when we first that’s how we first met, was knocking on those doors going, for fuck’s sake, hello. They’re suspending that like what the fuck? But, you know, that’s that conversation of like, oh, there’s not enough to say people, so why would we do it? But they’re like, well, if you build it, they will come. And then they’re like, oh, well, it costs too much money to put a ramp in. But you put one ramp in. I bet you see a lot of disabled people come through. I mean, this is just this is just the tip of the iceberg. But going back to this thing about the purple pound is we’re constantly as as anyone in this space has been has been trying to use that as their tool to, like, leverage their, like, you know, like crowbar their way in as a reason for someone, as a business to be like, come on, guys, this is purple pound and it’s the largest untapped market in the world. It’s been proven it’s billions and billions of pounds and. [00:45:10][49.4]

Jameela: [00:45:11] Sophie you and I were saying this on the BBC News eight years ago, one hundred percent. [00:45:15][4.5]

Sophie: [00:45:16] But you know what Jameela? This is where I get excited because I feel the minute we well, this is where I get hopeful. The minute we put disabled people in the room, we don’t have to fucking argue like that anymore. We don’t have to say do it because you’re going to make money. We don’t have to do it. We don’t have to. Yes, you will. And that will be the side effect. But that will be one of the consequences of being inclusive. But when we got disabled people in the room where the power is brokered. If where we’ve got disabled people in the spaces where they’re making charge and making decisions, we don’t need to prove to them that there’s a reason to do this. We don’t need to have a reason to do this. They just know that that’s what you have to do. You don’t have to tell a woman to, you know, hire more women because then they’ll sell to more women. They do it because they are a woman and they want women in the space. You know, it’s that sort of so that’s where. So going back to this point of what do we need to do? We need to get we need to facilitate we need to enable and empower disabled people into work. It is so important. And then you have agency then also you can lift yourself out of poverty. I mean, poverty and disability are inextricably linked. And if we want to even stand a chance of ending that, or giving disabled people the power over their own lives, we’ve got to be able to get employment. So that, I feel, is the where the podcast concluded, where we feel that, you know, the conversation needs to go next. It’s just it’s going to take a group effort and we need allyship. We need awareness. We need a lot. But I feel that if we can lean that our efforts into that or funnel our efforts there, then we’ll see the shift that we need. The paradigm shift will just it will just happen I think. [00:46:51][95.4]

Jameela: [00:46:52] I think no, I think it’s really I think it’s so important. I love the fact that this is something that you’re focusing on. And I also think that this is not a conversation of, you know, this is not a capitalist conversation of like we need the money to be coming from or going to disabled people. This is just about a balance of power, not because not because we’re striving to have the power, because nobody should have the power. We should all just have equal power, equal representation, equal access to health care. You know, we were talking about this again, you know, just the two of us. But I’ve just shot an action role for Marvel. And when I had to tell them about my disability, I was terrified because I was just like, oh, they’re just going to say no. [00:47:34][42.7]

Sophie: [00:47:36] Yeah man, I mean Jesus [00:47:36][0.0]

Jameela: [00:47:37] and and I think I think, like, some of the people were definitely nervous because they were like, well, this is the first time we’ve ever worked with something like this before. And I thought they would then like kind of just make me do CGI, get someone else to do everything and never teach me anything. And instead they were just like, right, we’re going to teach you everything. You’re going to do everything, and we’re going to build a team around you. [00:47:55][18.3]

Sophie: [00:47:55] You broke ground. You broke the glass ceiling, right? [00:47:57][2.1]

Jameela: [00:47:58] I did. And it like I proved things not only to them, but to myself that I didn’t think I was capable of. I always used to say that I would never do an action role because I’ve always I’ve been told, like, oh, you’re so fragile. Oh, you’re so useless. Oh, you’re too clumsy. You know, and even by my doctors just being like, you mustn’t you should stay in bed, stay, but stay safe. Don’t eat this don’t do that. [00:48:14][16.5]

Sophie: [00:48:14] How long did you believe that? How long did you believe it? [00:48:18][3.5]

Jameela: [00:48:19] Till April or May this year. [00:48:20][1.9]

Sophie: [00:48:21] Wow. [00:48:21][0.0]

Jameela: [00:48:22] So, you know, I’m just coming into like this new awakening of like, oh, my God, oh, my God, I’m so much more capable than I thought I was. And also, I’m not a fucking burden. I’ve always like I’ve always advocated for other people with disabilities. And they’re like, you’re not a burden. But there’s a part of me I don’t know if you ever go through relationships or not. You’re just like, oh, but I’m a burden, you know, like I find myself apologizing to my boyfriend when I’m sick or my legs are swollen at the end of the day. And he’s just like, shut the fuck up. Just shut up. It’s like this isn’t a thing like I don’t find this unattractive or annoying. Here was like, this is just a part of you and this part of you makes the other parts of you like you will come you’re a whole package. [00:49:03][41.1]

Sophie: [00:49:04] He’s saying you’re not. This is something I find so interesting. And I have to say, really, I love hearing from you. If I if I can be so selfish is that I really empathize. I think to I was trying to say this earlier that I feel if suddenly stepped into my adult disability, now I feel like I’m in my 18 year old paralyzed as well. [00:49:22][18.2]

Jameela: [00:49:23] I’m in my 19th year as well. [00:49:23][0.2]

Sophie: [00:49:23] Yeah mate, exactly. So maybe [00:49:24][0.8]

Jameela: [00:49:27] I think it might have been at the same time for both of us. [00:49:27][0.0]

Sophie: [00:49:27] that we flown our own nest, so to speak, and like we’ve grown. And I think it’s so easy to say to other people be you’re not a burden. Your disability is doesn’t, you know, is nothing to be ashamed of it and don’t internalize any of that ableism shit. But I recognize it in myself, like you just said there, you know, some of the things, the limitations that people put on you, you took them, you carried them. And now [00:49:49][22.0]

Jameela: [00:49:49] I can’t do reverse cowgirl Sophie. I mean, that’s just not on the table. [00:49:53][3.5]

Sophie: [00:49:53] No mate, I’m with you. [00:49:54][0.7]

Jameela: [00:49:54] That’s not my fucking cards you know what I mean? [00:49:58][3.5]

Sophie: [00:49:59] No no it’s not part of my repetoire of fucking moves. No babe, no. [00:49:59][0.5]

Jameela: [00:50:00] I can’t go camping. I can’t if I don’t have a very specific pillow, I’m absolutely fucked for the entire week. I dislocate all the time, you know, like I. [00:50:10][10.1]

Sophie: [00:50:11] It’s the thing. [00:50:11][0.2]

Jameela: [00:50:13] Yeah. I’m walking with James and suddenly in my hip will just be like, no, it will just slightly move in within the socket and then I can’t walk anymore. I just it [00:50:22][8.9]

Sophie: [00:50:22] How long will it take for you to be like, this is cool, this is fucking me. I mean, I remember when I was first finally injured and spinal injury is so complicated as so with your disability. We’ve got so many other things that people don’t kind of know about. They look at me in the like, oh, she can’t walk. I’m like, mate, that’s the least of my fucking problems, you know what I mean, it’s like it’s it’s it’s to do with. I can’t regulate my temperature. I don’t know when I need to go to the loo, I have no idea of what’s hurting me if something’s hot. I mean, it’s so much going on. But for a long time, I just was like, no, no, it’s fine. I’m not disabled. It’s fine. It’s fine. And I would just try and I just I just written a book about this. I’ve written my first book, which was one of the scariest things I’ve done. [00:50:57][35.3]

Jameela: [00:50:58] Congratulations! [00:50:58][0.0]

Sophie: [00:50:59] Thanks babe. And I wrote about it actually in my book. I wrote some truths that I hadn’t actually ever told anybody because I thought, I’ve got to do this now. It’s time I got to own up to where I’m at. And I think that’s what you were saying just there. That kind of like it’s okay to say to my boyfriend, I can’t do this or to my mates, I’m not coming. I never did that. It’s taking a long time for me to not do that and say, look, I’m not coming your house because it’s not accessible. It’s not cause I don’t love you. I just I can’t come because I’m not going to go to the loo and I could risk wetting myself. And I don’t want to do that. Whereas before I go, fuck it I’ll just wet myself. It’s fine. Fuck it. You know what I mean. [00:51:32][33.3]

Jameela: [00:51:33] Yeah, I mean, I, I’d never dated anyone where I told them. I said the irony of me being accused of Munchausen is so funny because like I went out my way to be like. [00:51:42][9.1]

Sophie: [00:51:42] What? [00:51:42][0.0]

Jameela: [00:51:42] Munchhausen, you know, where like you fake illnesses. That’s what last last February I was accused of that by the entire Internet. It was really weird. But the irony of me being accused of that and I was like, fuck, it’s so funny. Like, you don’t even know. Like, I don’t I like I didn’t even go to a GP for like five years when I first got to America because I was so afraid of doctors and I don’t like look after myself properly. I don’t I never told anyone until James quite how tricky my condition is. You know, I would just wear clothes that would cover my leg swelling or I would make excuses for why I couldn’t hang out or, you know, like, I don’t know, pretend I was having a one month period. If I was having issues where I couldn’t have sex, I just I’d never had anyone before who made me feel so safe. [00:52:24][41.3]

Sophie: [00:52:25] So has he been a turning point for you. Has he given you those words? [00:52:27][2.3]

Jameela: [00:52:28] Massively. Massively and I’m annoyed that it came from outside of myself. But sometimes, you know, it has to and I guess that’s kind of a part of the point of this episode is also just remind allies out there that you can make a profound difference on someone’s ability to live freely and integrily. And so he just kind of made me feel like it’s just not it’s just so not a big deal. He’s so good at applicating himself, advocating for himself, and he just taught me how to advocate for myself. He was just like, if you can’t do just don’t do it. If you don’t if you don’t want to go, I’ll just I want to go for a hike or, you know, oh you don’t want to go for a hike. That’s fine. We’ll go. I’ll wait till you’re doing something and then I’ll go for my hike separately. Or this that he never made me feel bad once ever about my illness. And this whole time I had it in my head that someone would be like, oh, you can’t do all these fun things. OK, well, fuck off then. [00:53:12][44.4]

Sophie: [00:53:13] Fuck. Fuck! [00:53:13][0.5]

Jameela: [00:53:13] And he just he didn’t he never fucked off. [00:53:15][1.2]

Sophie: [00:53:16] Oh I’m so happy fo you. I’m so fucking happy for you because that is finding that little permission granted. It’s just it’s powerful. I’ve I’ve not had it. In fact, I’ve had the polar opposite. And I think my trigger was probably almost like the polar opposite. I had such a poor relationship with this really, really awful, quite abusive partner. And I think what it did is it made me go, holy shit, you’ve let so much go. You’ve let so much of yourself bend and not be truthful. Who the hell are you? And I woke up after lockedown, we broke up in lockdown. And that’s when I wrote my book. And I was like, I worked it out of my book because I shit, I’ve I’ve not actually I’ve gone I’ve lost myself in this whole I’m an advocate and I’m always saying these things to other people. When have I not said it to myself. So that softness to your point about how to speak to disabled people, I have to tell myself to be kind to myself, to speak to myself in those ways, which is like it’s OK, you’re cool, it’s OK. You’re not a let down. You’re not a failure. You’re not a burden. You’re not all those things. It’s OK. You know, it’s really fucking hard work so I’m so happy for you. [00:54:14][58.7]

Jameela: [00:54:14] I’m going to need to be I’m just going to need to be a societal effort because there is a part of us that goes when society says loudly, you can’t a lot of us go loudly, yes, I can. And then our inner bully goes, you can’t. You can’t. You can’t really. Um stop it. And so that is a really. Yeah, that’s a really dangerous voice in our heads that stops us from going for love or jobs or passions or hobbies or whatever, like the amount of things that we aren’t always just excluded from the we exclude ourselves from. [00:54:43][28.6]

Sophie: [00:54:43] Isn’t it wonderful to know that we’re all the same? [00:54:45][1.1]

Jameela: [00:54:46] One in five and it’s one in five motherfucking people. So like all allies out there, and this includes me because of my my disability is invisible, so. Right. So there are plenty of things that I can do that some of my friends can’t do. So it is on all of us to continuously make effort to remind people that they deserve they deserve happiness, basic respect, love, patience, kindness, and all the same help that we would want if we were in that same position. And so, yeah, I’m very I’m very, very lucky to have someone in my life. But I would like to, you know, who who treats me with such care. But I would love for it. I’d love to not feel this lucky. [00:55:22][36.0]

Sophie: [00:55:22] Do you know what, though, at the same time I’m listening to you and I’m thinking, yes, OK, if for you it took meeting this amazing person, your partner, giving you that. And that is transformative for me. It took losing somebody to wake myself up. But at the end of the day, what we’ve also got is one another. And we’ve got I think we need to remind ourselves that there are. In the same boat as us and have these conversations like you’re having now and say, have you been there, too? Yeah, ok I’ve been there. OK, it may be in a different format, but we can relate and we can empathize. And that’s what unifies us, is that actually, you know, our journeys might all be really very different. You know, my journey from being paralyzed to being a television presenter or whatever, it’s really random. But there’s so many similarities in in within us, so much so, so much that unifies one another. It doesn’t matter what your background is or what’s happened to you. We can all understand what it feels like to feel really disabled by our own minds, let alone our own bodies. [00:56:17][54.7]

Jameela: [00:56:17] Yeah it could be social anxiety. It could be anything. So, so moving because I’d love to hear where you are right now. I didn’t realize that you were in an abusive sort of relationship, and I’m really fucking horrified and feeling quite homicidal hearing about that because you’re such a such a gem of a human being. Still a bit of a bitch sometimes as you know. [00:56:38][20.5]

Sophie: [00:56:38] Always a bitch. [00:56:38][0.2]

Jameela: [00:56:39] No, but I. Where are you at? Where are you at now? Like. Has it made it has it has that realization propelled you into a space of advocacy for yourself or you’re like right, next time around. I mean, I don’t know if you’re in another relationship or not but like next time round. I’m I’m going into this like backing myself in this way of protecting myself in this way, building myself up so that I’m not vulnerable to this sort of prick again. [00:57:04][25.7]

Sophie: [00:57:05] I love to think that I have that shield and it’s never coming down. But I worry about I worry about that. I think what I what I mean by that is. So I’m good. Thank you. I’m okay. I just it’s been a really tough year. And I think I didn’t realize that I got myself into the situation that I had. And I, I, I say that with so much sort of now self respect, because I, I know so many women who I’ve who I’ve spoken to in the last six months or so that have said that they recognize that, that they found themselves in these relationships. They’re like, how did I get here? I didn’t think I was that woman. I don’t know what that woman means. But like, you don’t ever imagine yourself to be the type. I didn’t think, you know, outwardly, I’m such a fighter and I’m anyone who knows me will say I am strong and I advocate for myself and I advocate for others and all those things. But actually, when it came to relationships, I lost myself and I would know I didn’t have the skills to know how to be my full self with my full disability. And it got really complicated. And like I said, it got pretty abusive, very abusive. And in the end, thankfully, it ended. But I think now where I’m going is a place of right. I’m getting really, really creative. I’m also getting really energetic. I mean, I’ve just I just presented my first ever series of my own, which is for me is a massive milestone. But something I’ve been working to forwards for years. I’ve written a book. I’ve done the podcast. I’m speaking to people like you. I’m I’m actually I feel like I want to be alone for for a while and just have this full amount of energy for myself and just keep it all for myself to be able to to do something that I hope changes the world a little bit. Fuck it, I said it. I know it sounds really grandiose and like, but I actually feel like I have a disability. I know, I had a disability for. I’ve often wondered if I had a disability for a reason. I looked at myself for all those years ago and I thought, what was the fuck? Why did this happen? And I, I find a real solace. I find real passion. I found real joy in thinking it happened so that I can do something good with it. And that does not include a fucking boy helping a boy. [00:59:11][126.0]

Jameela: [00:59:11] No, no, no. It’s so empowering to be able to know that you can recycle all of that like trauma or pain or. [00:59:18][6.7]

Sophie: [00:59:19] Is that ok? Do you think that’s ok? Do you think that’s a good thing to do? [00:59:19][0.2]

Jameela: [00:59:19] You know all of those lessons and turn it into something good. No I think it’s great. I think it’s great. I mean, it’s how I justify being so mentally ill my entire life is I’m like, well, at least now I have loads of empathy for other people, which has made me feel much more connected to other people. Like I can understand so much more of a diversity of people. And also and that’s maybe like giving me access to all these great friendships and relationships and just one off chance, even though have changed the course of my life. But also it’s taught me a lot and I’m able to now use it to go and help other people struggling with their mental health. So, you know, if they’re in the middle of it, I can be like, hey, I’ve been there too make them feel less alone. Or maybe if they’re on the precipice of it, I can be like, here are these tools or hey don’t do that because I did it and this is how I fucked it up. And and now I you know, if I could go back and I’ve gone back and forth over this, my, you know, a lot of my life with some of the issues that I have because my my disability makes every single every single facet of every minute of every day complicated. I wouldn’t change it for the world. I wouldn’t change it. [01:00:21][62.3]

Sophie: [01:00:23] Do you think people tend to believe you when you say that? [01:00:23][0.1]

Jameela: [01:00:23] I used to wish, I know, I know. But they probably don’t. [01:00:26][3.1]

Sophie: [01:00:26] I know. I know. [01:00:27][0.3]

Jameela: [01:00:27] And I don’t think I felt this way when I was younger. But now, like everything I’ve experienced is community being able to, like, meet people like you, having the solidarity with the people I have now. All of that comes from that. And I. I like who I am, most of the time, sometimes I’m still a bit twat. But, you know, would you would you take it back? Like, how do you feel? [01:00:50][23.3]

Sophie: [01:00:51] You know, I closed [01:00:51][0.5]

Jameela: [01:00:52] Don’t be a mixed answer. [01:00:52][0.4]

Sophie: [01:00:53] You know what? I closed I closed the chapter of my book with this question of if I could go back to the minute I was paralyzed, if I could, would I? I mean, we all have those questions, like if I could go back, but if I could go back to that moment where I sat in the car and I was driving really badly and I was going to crash that car, would I go back? And for the first time, I knew categorically and I write this chapter about actually doing it. And I had this really weird experience of just talking to myself and actually sitting in the room with myself and go right, what would you do? What would you do? And I realized in that moment, I think she the girl that wasn’t paralyzed, the girl that didn’t end up in a wheelchair, the girl that walks around her life without any awareness of what it’s like to struggle. I think she would look at me and she would miss me. She would like me. She would be like, you’re cool. I think you get things. And I had this weird and it gives me goose bumps now thinking like I actually think the girl I was and the girl I am would love each other. And actually I used to think I was jealous of her. I used to kind of want to be that girl that didn’t have a disability. But now I’m like, no, I’d rather be the girl that does have a disability because I like this. I like this life. I like I like that I get to do this. I like that I get to wake up and feel galvanized and moved and I feel pain and suffering. Christ, I suffer, but I, I’d rather suffer than not. And I think I think that’s, I’m with you. I feel you when you say that you wouldn’t change it. And I try it so hard sometimes to articulate it to people and they’re like they do that kind of thing, like, oh, she’s in denial, she’s pretending. I’m not I’m not. [01:02:23][90.5]

Jameela: [01:02:25] No and obviously there are some times I’m sure when you’re at the bottom of a fucking flight of stairs, you’re just like for fucks sake. [01:02:30][5.3]

Sophie: [01:02:30] I was stuck on my stomach for I had to lie on my stomach for three years when I was 18, 19, 20, I had to lie on my stomach. I couldn’t sit up. I had to lie in bed for three years. And I remember those times, you know, thinking what’s going to be like on the other side. But that’s that’s you know, we’ve all been there. You will have been there. There’s lowest lows. I get there. I’m like the high after this is going to be so goddamn high and it’s going to just be the best. Life is just going to get the lower the low, the higher the high. It’s just going to be amazing. And so you should hold onto that right. [01:03:04][33.6]

Jameela: [01:03:04] It creates it creates dynamics. It creates dynamics in our lives. But I yeah, I, I really I love the woman that you’ve become. And also it’s been really interesting to like kind of get to know you eight years ago and then kind of lose touch, reconnect and then see where you’re at now. And like the you’re just kind of your emotional growth is so evident and you feel like you were always I think we were both quite confident, but faking a lot of it. And I feel like now we genuinely feel like we’re in our bones. And I know part that’s just from being in our thirties. But also I really feel like we are we’re where we’re supposed to be, where the people we’re supposed to be. And I’m so happy that you exist. And I was so happy to get to learn from you and with you. And honestly, I’m I’m so sorry that that happened with this person. But I hope you know how much you deserve just to be absolutely cherished. And if you don’t yet, then you will know. And hopefully, unlike me, you won’t have to it won’t have to take someone telling you to fuck off all the time to finally understand that. [01:04:14][70.2]

Sophie: [01:04:15] No, and I, I can’t tell you how much it feels reciprocated to say what you just said. I, I feel like we’ve we’ve done this in our lives and I’ve watched you go from my God, from where we were to where you are now and feel so it just in awe. But also I really I really recognize how much we have grown. And I do feel we are like that kind of grown disabled women that we have been waiting to be for a long time. So it’s just been a privilege to sit and chat with you. And I can’t wait to see what happens next for both of us and for all disabled people. [01:04:46][30.8]

Jameela: [01:04:54] We want to talk about what’s next, I mean, that we spoke about in the podcast, you talk about this a lot with hashtag Disabled Lives Matter, a growing movement that both of us feel passionately about. And let’s talk about the 2028 Olympics. [01:05:08][14.6]

Sophie: [01:05:09] Yeah, this is interesting. Right? So this is a question that I think. [01:05:12][3.4]

Jameela: [01:05:13] Paralympics rather. [01:05:13][0.7]

Sophie: [01:05:14] Yeah. So, yeah, exactly. The Paralympics. We need to chuck this out there as a as a question to all your listeners and a question to the wider society of just right. What are we going to do here? Because we’ve got an opportunity, we’ve got the Paralympics and they’re going to be in Paris and then they’re going to be in L.A. But L.A. is a hotbed. We’ve got that. We’ve got so much culture. You know, sport and culture are going to collide in a way that we’ve never really probably ever seen before. We had a bit in London. We flirted with it. We got we got there right. London was London was a game changer. But I think we didn’t also have that missing ingredient, which I think the states has, which is a huge, I suppose, a bed of unrest. People that want more people that. I think the British are a little bit like, I don’t know, I’m not an expert but overgeneralization. I just think America could be there could be something that we we’ve never seen before. So let’s think what [01:06:06][52.6]

Jameela: [01:06:06] It’s also going to be really interesting to see what the Paralympics are going to be like in Paris, because all these fucking buildings are listed and they just don’t have a lot of access. It was really shocking to me when I went there. At least America is and this isn’t for a great reason, but America is so litigious that everyone’s so afraid of being sued that the access is phenomenal in Los Angeles compared to anywhere else I’ve ever been. [01:06:28][21.4]

Sophie: [01:06:29] Yeah, it’s it’s like I get there and I’m like, oh, my God, this is what it’s like to wow. I go in the same door as other people? In London, I have to go through the back door down and down a stairwell, up through a fucking lift around the back. And I get carried in by a weird man to get to the same table as people in most restaurants. L.A. It’s like you can go through the same fucking door as everyone else. Holy shit. So to your point about Paris, I think we need to be careful. I think we need to make sure and there are obviously people completely across this. I think it’s just really important that we keep the conversation, you know, amplify voices that are calling out where things aren’t quite landing. And if infrastructure is not going to get changed, why the hell not? What are the metrics here of success? But the IPC, the International Paralympic Committee is headed by the most amazing man. His name’s Andrew Parsons, and he speaks so powerfully about how he feels the Paralympics can be used as a movement for good. So it’s not like the Paralympics is just like, oh, we’re just going to do sport. They’re not you know, the IPC is like we are going to use this to change the world. So I feel very encouraged that we’re going to see big wide attraction. There’s frameworks being put in place around the games now to make sure that inclusion becomes part of the legacy. That legacy isn’t just about the sport, which, of course, is important, but it’s also there’s wider issues that need to be tackled. [01:07:49][80.7]

Jameela: [01:07:49] Yeah it’s not just about the model minority, it’s about creating a kind of. Yeah, a safe space for that big conversation. [01:07:55][5.7]

Sophie: [01:07:56] Exactly. So I think Paris Games could be exciting. But I, I my hope I mean, you said this in our podcast. We don’t want to fucking wait till LA. We don’t have to wait till 2028 for change to happen. [01:08:08][11.9]

Jameela: [01:08:08] No we have to start now. [01:08:09][0.5]

Sophie: [01:08:09] We have to start now. But I do feel I am excited because what we will see in America and with the L.A. Games is a commercial opportunity like we’ve never seen before. So some of the biggest brands in the world, if they get engaged with the Paralympics, I mean, sky’s the limit, right? Because commercial buying matters, [01:08:31][21.6]

Jameela: [01:08:32] LA it’s an opportunity for fucking marketing and branding. So, there’s that. It’s just that I just don’t want any of the fixtures that come up in Paris and L.A. and any of these countries. I don’t want them to be temporary. [01:08:43][10.9]

Sophie: [01:08:43] I know. I know. [01:08:44][1.0]

Jameela: [01:08:45] It’s always got to be the beginning of how things are going to look from now on. And I think what we were talking about on on your podcast is that what’s so exciting about it being in L.A. is that it’s the sort of it’s it’s the hub of representation where representation becomes possible. You know, Will and Grace changed the way that a lot of Americans felt about gay people like this is this is a town that has massively as soon as they started making it more racially diverse projects, they were like, that’s it. Hollywood’s woke Hollywood’s liberal. Hollywood’s all inclusive. And it’s like, the fuck it isn’t. I say this in every interview I do. And it gets cut out of most of my interviews. Like what about disabled representation? I can’t believe they cut it out of almost every single thing I do. Anything I do on video, podcasts, anything. They’re just whenever I bring it up, they’ll be like, oh yeah, in the room. And then it will never make it to edit because they don’t really want to have the conversation. And so it’s really exciting to now have my own podcast. Have you have your own podcast and know that this now we’re going to be right in the middle of this town like they can’t pretend. [01:09:47][62.0]

Sophie: [01:09:47] They can’t ignore us. [01:09:49][1.1]

Jameela: [01:09:49] We don’t exist anymore. And what and what we were talking about is not wanting this to be like an event like a one week, one month event where nondisabled, like famous people turn up and get that sort of allyship cookies on the red carpet of the Paralympics and cheer on disabled sports like the model minority of athletes. We need this to be something that starts now so that by the time we get those two thousand and twenty eight, I can’t believe we’ve been alive this long list that I never thought I’d be alive to see that year. But by the time we get to that, to that point and I don’t want I don’t want people to turn up because they’ll get their allyship points or to look like a good citizen doing charity for people with disabilities. I want it to be the norm by then. I want there to be people getting nominated for Emmys and people getting nominated for Oscars and people I want to see Commissioners at big networks with disability with visible and invisible disability. I want the change to have already been there, the change we can’t wait for the change to start in 2028. We just have to be ready to make sure it stays. Everything we build up until then has to then stay. [01:10:58][69.2]

Sophie: [01:10:59] Hell yes. [01:10:59][0.1]

Jameela: [01:10:59] So how can people, how can people listening to this podcast support your work and this work? [01:11:05][6.5]

Sophie: [01:11:07] Well firstly hell yes to that. Absolutely. On point summary of where the fuck we need to go. And I think. OK, so to the question about how to support I think I what do I want? I’d love people to engage in our podcast Equal To. I’d love to be questions and reflections and feedback on what you hear. But also I want it trigger more and lead people down, you know, into to their own journeys of like what do I know about disability and what do I need to know? And let’s let’s go on this together. I think that there needs to be accountability. I really want to find a way to find accountability to where we can say where things are going wrong, how do we call it out and it get heard. But when things are going right, how do we point a finger and celebrate that and celebrate it? I really want those things to be what we start doing next. So I don’t have a conclusive answer as to how we do that, but that’s something that I would really like to see more of. [01:12:06][59.6]

Jameela: [01:12:07] Well, where can where is a is there a website that you like that you feel like is a good place? For example, IPC. Like is there somewhere with. [01:12:14][6.7]

Sophie: [01:12:14] So there’s a campaign called We the 15. #WeThe15, which I think everyone should engage in. It’s it’s about it’s all around the fact that the 15 percent of the global population have a disability and it’s got some fantastic voices and it’s got a plan for the next decade. And I think people should really engage in that. There’s our hashtag Equal To as well. And our website, htyt.world, where there’s more information and transcripts of our podcast, I think engage with some real important figures in our community, which I would like to list here now. But I think it would just go on for too long. And I don’t want to miss anybody out, but we can put them in the show notes or something. And just so I can send over a list of some of the most important voices out there that we can follow on social media. But also just I think whenever you’re in the room, wherever you are, ask who’s not there. And if they’re not there, you know, if there’s no disabled person, if there’s no person of color who’s disabled, if there’s no you know, if there’s only one type of disability in the room or something like that, ask why they’re not there and see how you can bring them in, even if it’s just as a consultancy. I mean, the term consultancy riles me, I don’t feel we should have to have outsourced expertize on disability, but we do and we have them. And there’s some great ones out there. Sinead Burke’s one is in itself, I mean, a prime example. But I think if you’re in the room somewhere and there’s somebody missing, ask yourself how to fill that gap and make sure we do that for one another, because otherwise, you know, we can all gain from it. This isn’t just about us and them. This is about all of us moving forward together. [01:13:48][94.1]

Jameela: [01:13:49] 100 percent. And amen. And yeah, there’s plenty of people that I can also direct everyone to that I frequently do direct everyone to on my social media. And so I will make sure that I also do that again underneath your post. So for anyone who’s wondering, like make sure that your time line and direct your day to day life once the world fully opens back up, really diversify not just your feed, but your day to day life. Gloria Steinem asks, who you going to lunch with? Right now? No one. But next year and surely by twenty twenty eight, we would hope. Work to widen your stratosphere. It’ll make you a better and smarter and more interesting person, and you never know what you’re going to learn and how it’s going to shape you. I think it’s really exciting. Your podcast is so good. It’s so accessible for anyone out there who has either recently entered the kind of world disability via themselves or via someone else they love. This isn’t a perfect place to start. It’s so warm and relatable, but no punches pulled and it’s a very unpretentious podcast, and Sophie and Sinead Burke are not pretentious people, they really aren’t looking to wag the finger at anyone. Not that that would be a problem, but you’re really just, like, fed up and looking for how do we move forward. It’s a logical and realistic and exciting podcast. [01:15:20][91.1]

Sophie: [01:15:21] Thank you. [01:15:21][0.0]

Jameela: [01:15:21] And the ideology. Yeah. You’re solution based rather than just playing kind of whack a mole with all of the lies on the Internet. I’m I’m so excited. I’m so thrilled that you came onto this podcast. I really want everyone to listen to Equal To. I was honestly one of my favorite interviews I’ve ever done was being on that podcast. Just such great interviewers and and, you know, follow Sophie, go give us some love after this episode. Follow her work. She is exceptional. And as is Sinead who sadly couldn’t be here because of because they’re both so fucking busy. We’ll get Schneid on another time for sure, because I really want to talk to her. But, Sophie, you’re so busy saving the world. So before you go, I just want to ask you, what do you weigh? [01:16:01][39.8]

Sophie: [01:16:02] I weigh my creativity, my joy and my love for my motorbike. [01:16:07][5.2]

Jameela: [01:16:10] I want to see your motorbike. [01:16:12][1.5]

Sophie: [01:16:12] Oh, you gotta see my motorbike. [01:16:13][0.8]

Jameela: [01:16:13] I was so excited. Look, I hope we make it to the same side of the world soon so we can go and hang out. But until then, you’re a joy. I’m so excited for your book. [01:16:27][14.1]

Sophie: [01:16:28] Oh my goodness. Oh God so scared. [01:16:29][1.1]

Jameela: [01:16:29] Lots of love. [01:16:29][0.0]

Sophie: [01:16:32] Oh babe, it’s been such a pleasure. Thank you so much. Thank you. [01:16:36][3.7]

Jameela: [01:16:39] Thank you so much for listening to this week’s episode. I Weigh with Jameela Jamil is produced a research by myself, Jameela Jamil, Erin Finnegan and Kimmie Gregory. It is edited by Andrew Carson. And the beautiful music you’re hearing now is made by my boyfriend, James Blake. If you haven’t already, please rate, review and subscribe to the show. It’s a great way to show your support. We also have a bonus series exclusively on Stitcher Premium called Ask Jameela Anything. Check it out. You can get a free month of Stitcher Premium by going to stitcher.com/premium and using the promo code I I Weigh. Lastly over at I Weigh we would love to hear from you and share what you weigh at the end of this podcast. You can leave us a voicemail at 1-818-660-5543 or email us what you weigh at Iweighpodcast@gmail.com and now we would love to pass the mic to one of our fabulous listeners. [01:17:28][49.5]

Listener: [01:17:30] Hello, friends, I weigh my empathy and being a good listener, I weigh my queerness that it took me nearly 17 years to accept and the community that I have found around being queer. I weigh if deciding to put myself through psych school at twenty four, I weigh my definition of femininity and no one else’s. I weigh not weighing myself in part of my eating disorder recovery. I weigh my capacity for love and I weigh my strength. [01:17:30][0.0]

[4519.4]