Art Heals All Wounds
Do you think art can change the world? So do I! We’re at a pivotal moment when scientists, medical practitioners, and creatives are coming together in recognition of the ways that art plays an indispensable role in our well-being, as individuals, communities, and societies. In each episode we hear from artists and creatives who share their inspiration for their work and its wider impact. These conversations about transformative artistic practices show the ways that art can be a catalyst for healing and change.
How do we change the world? One artist at a time.
Art Heals All Wounds
Saving Face: Effy Redman on Disability, Identity, and Advocacy
In this episode of Art Heals All Wounds, host I talk with author and disability advocate Effy Redman about the transformative power of art. Effy shares insights from her memoir, 'Saving Face,' which chronicles her life with Moebius Syndrome, a condition that affects her ability to make facial expressions. Effy speaks candidly about her experiences with shame, disability advocacy, and the intersection of LGBTQ identity. She also highlights the significance of therapy and writing in her journey toward self-acceptance and empowerment. This episode delves into personal stories, familial relationships, and the broader implications of disability and identity, offering listeners a deep and empathetic understanding of Effy's experience.
00:00 Introduction to Art Heals All Wounds
00:34 Exploring the Power of a Smile
01:12 Effy Redman's Journey with Moebius Syndrome
02:51 Effy's Advocacy and Writing
17:29 Navigating Family Dynamics
40:51 Intersection of Disability and LGBTQ Identity
47:42 Conclusion and Contact Information
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[00:00:00] Pam Uzzell: Do you believe art can change the world? So do I! On this show, we meet artists whose work is doing just that. Welcome to Art Heals All Wounds. I'm your host, Pam Uzzell.
[00:00:34] Recently, I read a book called Saving Face by Effy Redman. It got me thinking a lot about smiling. I wondered, how often do I smile? When do I smile? And why? I teach online students video editing, and instead of leaving them written feedback, I leave their feedback in a short video. And I smile a lot giving this feedback.
[00:01:02] I want them to know 'I like you, I'm on your side, and here are some ways to make your work better'. It's so easy. In her memoir, Saving Face, Effy Redman recounts her experience having Moebius Syndrome. Moebius Syndrome is a rare condition in which facial nerves that control the eyes and expressions are underdeveloped.
[00:01:27] Effy is unable to smile or frown or make facial expressions that most of us use to convey our thoughts and feelings. Effy describes how so many people around her have taken her as a blank slate and projected all kinds of things onto her. She also talks a lot about the shame that she grappled with over her disability and her journey to feeling proud of who she is and of her face.
[00:01:58] Effy's skills as a writer has allowed her to express herself and find community with those with Moebius syndrome and others with disabilities. By sharing her story, she's become an advocate, particularly for LGBTQ folks with disabilities. Her writing is unflinchingly honest. Many times you'll find yourself aching for her, but you'll also experience a powerful story of Effy's path to self discovery.
[00:02:30] and self love.
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[00:02:51] Hi Effy, thank you so much for being on Art Heals All Wounds. Can you start by introducing yourself, telling us who you are, and what you do?
[00:03:00] Effy Redman: Sure. Thank you, Pam. I'm so happy to be here today and I am an author. I write about sort of the intersection of LGBTQ and disability and mental health identity. And, uh, kind of that journey reflected in my life and the communities I have moved through. I'm also a disability advocate, which I primarily do through writing.
[00:03:47] Pam Uzzell: And you have a new book called Saving Face, which was a really amazing thing for me to read.
[00:03:55] And there's so much that I want to ask you about it, but just briefly, can you talk about this book a little bit, what it is?
[00:04:04] Effy Redman: Absolutely, and thank you, first of all, so much for reading it. Saving Face is what I would call a queer coming of age, disability memoir. It talks about my journey growing up with a rare condition of facial paralysis.
[00:04:34] called Moebius syndrome, which is caused by underdevelopment of the 6th and 7th cranial nerve. That means that I cannot smile or frown. I cannot drink. I don't have much [00:05:00] peripheral vision. Basically, my face is paralyzed. And so my book deals with kind of the social, implications of growing up as a woman, as a queer woman with a face that does not follow the societal norms.
[00:05:33] Pam Uzzell: I had never heard of Moebius Syndrome before reading your book, and it's made me think so much about smiling. and how it's kind of a social currency. And I felt so many things reading this book and I related to so many things. I mean, when you read a memoir, you read it to learn about the other person, but I think you also find out about yourself in a memoir.
[00:06:01] One thing I loved is that you begin and end your story, like with these bookends, you're heading to the Moebius syndrome conference at the beginning. And then we go back and learn about your life. And then you end up there. And I would love to know more about going to this conference, what that was like for you.
[00:06:25] and what you were looking for.
[00:06:27] Effy Redman: Yeah, thank you so much. I think for a lot of my teenage years, I really felt like an outsider, and part of that had to do with immigration from England to America. at age 13. And, um, I really felt like an outsider through high school. I had trouble making friends and kind of ordinary socializing was a challenge for me.
[00:07:08] So I think in undergraduate college, I began to connect with my parents and my teachers. It was definitely a more gentle environment. I went to a liberal arts college, as I was coming to the end of my time in undergrad college, I felt the need to take a journey to understand more about my facial difference. I think, even though I had begun really connecting with people in college, I, I still was like very afraid.
[00:08:09] of being vulnerable and talking about my face and about not being able to smile. And so I went to the conference right after I graduated and, um, I, it was really eye-opening because I think I found that it really wasn't as scary as I had thought it would be, talking about my face and kind of examining what it means not to be able to smile or to have a speech impediment because here I was surrounded by people who had similar challenges and, um, many of them were, like, married and had children and were, you know, happily living their adult lives.
[00:09:23] Pam Uzzell: That's fascinating. I have so many things that I want to ask you about, but I don't want to go on a tangent. But I do want to know if seeing that changed your perspective on yourself and what was possible for you?
[00:09:41] Effy Redman: I think it did, but I think it still, it still took me a really long time to put that into action.
[00:09:56] Both professionally and [00:10:00] personally, and um, I don't know if you want me to go into kind of how that happened.
[00:10:08] Pam Uzzell: Oh sure, of course.
[00:10:10] Effy Redman: I already knew I wanted to write professionally. And at the time, I was a playwright, and um, At that time, like, around the time I went to the conference, uh, you know, I had written a little bit about my own journey, but I was still very focused on looking, kind of, outside of myself for material to write about.
[00:10:51] So I, like, have one play about Kafka and his father, and then another play, which I refer to in my book, about The Rwandan genocide. So I, I'm sort of casting about trying to find a voice and to write a young writer and not really looking inward so much. And, uh, like, oh, well I find that interesting. Let me see if I can tell that story.
[00:11:37] And, um, it was actually, um, my very dear friend and mentor, Catherine Filloux, who, shout out to Catherine, who introduced me to you and who was also a wonderful guest on your podcast. So, Catherine advised me in, I think it was 2006. She said, I have an idea. You know what if you wrote about yourself? Because I had had like really in-depth conversations with her about my disability and she, she said, you know, I think.
[00:12:40] If you were to write about yourself and your journey with disability, That would be something, really, that people would be interested in and also you could help people, um, with similar challenges. So, I think that kind of planted a seed, and then it took until, like, 2013 was when I began writing the essay that would later become my book, Saving Face.
[00:13:29] I am so grateful that Catherine did introduce us. I want to bring up some things in your book that I found particularly powerful to read. One of them is that you've had the experience in your lifetime that because you're not smiling or doing other types of facial expressions, people project onto you as if you are a blank slate.
[00:13:59] Pam Uzzell: And I would love to know more about that experience and also how you feel that your writing is a way to show that you are not a blank slate at all.
[00:14:13] Effy Redman: Yeah, I think that being treated like a blank slate kind of began when I was a teenager. Uh, I was like very withdrawn and um, kind of struggling and um, I kind of, got a reputation in my school and kind of at home for being like a very good girl, good student, helping with housework, kind of good.
[00:14:56] And um, I [00:15:00] think I did eventually rebel against that. Although I I kind of did the rebellion later than most people do, like, I was in my twenties when I kind of rebelled. I think most people, they hit puberty and they kind of have the rebellious streak. Um, And I think through writing, I found an outlet to kind of show the things I had difficulty saying out loud.
[00:15:49] For example, when I came out as a lesbian, I did come out verbally to a number of people in my family. And to another friend. But there are quite a few people who didn't really get it until they read my book, which is like very much telling my coming out story and how that, how that went. It was not your typical coming out story.
[00:16:33] Not that there is a typical coming out story. But, um. Yeah, so I think in terms of being a blank slate early on, like, writing has allowed me to kind of write, write my own story on that slate, so to speak.
[00:17:02] Pam Uzzell: Yeah, and as you were talking, I was just thinking a lot about how, for better or worse, sometimes it's really necessary to rebel if a lot of things have been projected onto you.
[00:17:17] And even if some of it is self destructive, it's a step towards autonomy. And taking control of the direction of your life. I do want to talk a little bit about your family. I wrote to you that I especially was curious or related a lot to your interaction with your mom.
[00:17:42] Effy Redman: Yeah.
[00:17:43] Yeah.
[00:17:44] Pam Uzzell: I'm wondering if I'm projecting onto it because I also have a daughter with a disability.
[00:17:50] So I wanted to ask you about your relationship with your mother and the really sort of nuanced complexity and balance that I felt I was getting from that.
[00:18:04] Effy Redman: Well, it's such a complicated question. I would say that my relationship with my mother is and always has been incredibly complex. I mean, she really was, when I was a child, and even into adolescence and young adulthood, my mother was my primary advocate.
[00:18:44] And she just fiercely, fiercely advocated for me at a time in the UK, in England, where disability rights, were not really developed very well in the kind of. medical system and um, she had to deal with some really frightening situations with authorities like telling her she had to follow certain guidelines in order to even keep me as her child.
[00:19:35] And so she really fought hard to protect my rights as her child. And, um, that definitely continued into high school and uh, even when I was like applying to college, my [00:20:00] mother kind of helped me with that process. And of course with every positive relationship, there's the possibility for difficulty along the way.
[00:20:17] As I became an adult and kind of found my own voice and moved out into the world, like, out from underneath my mother's shelter, so to speak. Um, I There were, there have been times when it was difficult to kind of do that balancing act between appreciating her support and needing to be independent and to like to, it can be a little thing like, well how often do I need to talk to my mother on the phone and see her and like, what's a healthy balance.
[00:21:17] And I mean now I'm 42 and middle-aged. very independent and have kind of my own community and it still, I still have like that very intense bond with my mother. Which I don't think will ever go away, but it can be challenging and it can be beautiful. It's just, it's not like black or white. It's just sort of, uh, ever
[00:22:00] evolving relationship to kind of navigate and, uh, but yeah, I cherish my mother and, um, it's certainly
[00:22:14] complicated.
[00:22:17] Pam Uzzell: It certainly comes across in your book that you cherish her. I don't know if you don't mind me sharing some of my own experiences.
[00:22:25] Effy Redman: Oh, no, I would love that.
[00:22:27] Pam Uzzell: Well, you talked a lot about your mom having to advocate for you and
[00:22:34] there is, for me, this fierce protectiveness of both of my children that can sometimes tip over into not being helpful. And that can be a little bit out of balance, maybe perhaps for parents who don't have a child with a disability. And then also learning how to let them be independent when you've carried maybe a certain amount of fear in your life that people will not be good to them or kind to them
[00:23:12] in this world. And I thought that was interesting reading about your mom's character in your relationship. And I actually thought she did maybe a better job than I've done. But it was interesting to read what you wrote about your relationship and your interactions with your mom, because I thought, wow, I am so happy to hear about this from a child.
[00:23:40] I mean, you're not a child, but your perspective is you're the child of your mom to read about that perspective of this relationship. So I thought there was a lot for me to learn there. You also talk about shame and disability, which I thought was really valuable to read. And I'll keep this about myself and not my daughter
[00:24:03] cause she's really good at her own story as well. But The disease that my daughter has is something that I passed down to her. And I feel like there's a lot of complicated feelings about that. But then also watching her really embrace her identity as someone with a disability is interesting to hear you talk about this element of shame.
[00:24:30] And I'm wondering if you would talk about that more, the role that that's played in your life.
[00:24:36] Effy Redman: Yeah, well, you know, it I think the thing with shame, it I find it never completely goes away, I think. It's always, like, something will happen, like, in my day [00:25:00] to day interactions out in the world, and, um, like, people having a visible disability, uh, like a facial difference, I get all kinds of different reactions to the way I look and the way I speak and communicate.
[00:25:31] And, um, often, you know, a lot of the time I find that people are very warm and accepting and aware. But then there are people who either are uncertain how to interact with me, or unfriendly, or you know, they get weird , for lack of a better, uh, expression. And, um, I, I, the older I get, I have to really check that initial moment
[00:26:19] when something like that happens. I often will feel a flash of shame and I have to kind of mentally, internally do the work of reminding myself that, you know, no, I am confident, I am beautiful, I am intelligent, all the everything I know to be good and true about myself. I have to kind of very quickly backpedal or maybe frontpedal and back into how I began the day, which hopefully was a good, like a, you know, good frame of mind, and, um, Yeah, I think shame is so complicated, um, it, it just, for me, when I was younger, I had so much shame and one thing that helped me overcome that was attending therapy and really kind of working on building self esteem and challenging those
[00:27:49] internal thoughts that can chew away my self esteem. But overall, I have largely overcome the shame I had as a young woman. It's just that the world at large isn't always on my team, so I kind of have to, like, navigate that as I move along through life.
[00:28:25] Pam Uzzell: Yes, not always being on your team. That's a good, that's a good way to put it, but I'm glad that you shared all those things about therapy, that that's helped you a great deal.
[00:28:38] And going back, I think probably. Well, I'll ask this rather than suppose it. Has being able to write your story and your experiences also helped with that, with this sense of shame and really feeling like you are proud of who you are?
[00:29:00] Effy Redman: Oh, definitely. I think because through writing my story. and sharing it widely,
[00:29:12] I learned, you know, that it's okay to be vulnerable. In fact, it's preferable to be vulnerable than to be guarded and sheltered. And um, so I think putting my story out there kind of taught me
[00:29:38] that.
[00:29:40] Pam Uzzell: There's one line in your book that I want to just say. I'm not sure if this is an exact quote that I pulled out, but this idea, if your face is a mask, you wear it as a power symbol.
[00:29:55] What do you mean by power symbol?
[00:29:57] Effy Redman: I think by [00:30:00] saying that I mean that I think a lot of people In America and even in the world, a power symbol might be an expensive car, or Uh, you know, a large house, or, uh, people who quote unquote marry well, and like, social elevation, or buying designer clothing. So, by saying that my disabled face is a power symbol.
[00:30:48] I mean that in my face, it shows that I have survived childhood and adolescence and all the challenges that disability has thrown my way. And the shame that you brought up, that you mentioned, um, that dominated what I thought of my face. But now, as a middle aged woman, I am proud of my face because of everything it represents.
[00:31:42] And, um, I think in overcoming the, like, the ugly side of how people can negatively react to disability, and also just, like, the physical challenges of having my disability, like, difficulty eating, and not being able to drink fully. And, uh, speech difficulty, all of that, like I, my faith represents all of that, and I am now in a place of pride rather than shame.
[00:32:35] Pam Uzzell: That's a really powerful thing to contemplate. And I'm gonna maybe switch gears, although I don't think so. One thing you include in your memoir is your trip to Rwanda after the genocide there. This was one of my favorite parts of the book, and I'm curious about why you included it and the impact that that trip had on you.
[00:33:02] Effy Redman: That trip was the first trip I ever took alone. Well, I was with a group, but a trip internationally that I took without my family. That was the first time I had done that, and it was a huge deal for me. And, um, I think that was one reason I included it to kind of show that desire to strike out on my own. But also, The Rwandan Genocide and my curiosity about that monumental tragedy as a writer.
[00:34:04] I think that was the beginning, indirectly, of my need to understand the kind of, I hate to say the horror of having a disability, but that was sort of how it was connected, you know. Something that is so kind of shocking and, uh, difficult to understand. Obviously, having a disability is nothing, nowhere near
[00:34:50] the level of atrocity, like, of horror or difficulty and national, [00:35:00] international tragedy of a genocide. But I think that grappling with questions of inhumanity and humanity began to get the wheels turning in my mind, so that years later, somehow, indirectly, I would begin to be able to, kind of, turn that human interest within, and, uh, kind of, examine on a more personal level, what I thought about the questions of humanity and, um, and that would ultimately lead me to then be able to turn outwards again, like, with advocacy and community
[00:36:09] activism.
[00:36:12] Pam Uzzell: Well, reading about it, I really felt the impact that that trip and just some of the places that you visited there had on you. And it really felt like a huge step in developing empathy and compassion, which, you know, we all hopefully know that the first place to turn compassion is to ourselves. It was such a powerful way that you described that trip.
[00:36:40] And I was really glad you included it because it seemed like one of those really formative experiences that a young person could have that would change the trajectory of their life.
[00:36:55] Effy Redman: Thank you. Yeah. And it, it absolutely, absolutely did. change the trajectory of my life, and even now, I'm still kind of unpacking what that trip meant, and, uh, I think genocide is incomprehensible, and yet I was trying to understand what happened and I think, I think you're completely right.
[00:37:35] I think it, it did. The trip to Rwanda did change how I was able to turn that empathy and compassion towards myself and towards other people, actually, along the way.
[00:37:56] Pam Uzzell: Well, you brought up the advocacy work that you do now for persons with disabilities and I'm wondering if you could talk how you That journey to getting there, what you do, but also how did you get there?
[00:38:14] Effy Redman: Well, it mostly happened, happened, and continues to happen through my writing. I mean, I think, I would say that my advocacy really, on a very simple level, is what I write and how I talk about it. And um, I think I simply, I got there by writing and publishing my writing and that began slowly and gradually and um, it really now is just about connecting both
[00:39:08] to my local community and to other communities I'm connected to online and, um, even, you know, by talking to you on this podcast, I, I feel that doing interviews is one way to raise awareness. And I think right now I'm very interested in how my book, Saving Face, can help me raise awareness about disability and queer identity and, uh, [00:40:00] mental health, recovery, and um, Yeah, it's been a long journey and I have definitely gotten knocked down and gotten back up a few times.
[00:40:16] But yeah, really just writing and talking about my writing and connecting with people through my writing who are either disabled or queer or both. And, I think it's taken me a long time to kind of figure out how to become an advocate, and I certainly have a lot to learn, so.
[00:40:51] Pam Uzzell: I'm glad you keep bringing up this intersection of disability
[00:40:56] and LGBTQ issues, because I think that that's something that maybe isn't talked about enough, that, that there's sometimes an overlooking of sexuality in the disability community that really needs to become normalized in a way that, of course, we're people, we have sexual orientations, we have sexual desires, we have gender identity.
[00:41:21] So I love that you keep emphasizing that as we're talking.
[00:41:25] Effy Redman: Thank you. Yeah, and um, Growing up, that was one thing I had to kind of figure out for myself. I think my family, when I was, a teenager didn't really have, like, the outside resources to kind of educate about, like, well, how, how do you talk to your disabled teenager about sexuality?
[00:42:05] So I really, that didn't really happen when I was a teenager. And I think I was also a little naive. So, I began to have, like, romantic interests in high school, but more so in undergraduate college. And, um, but I didn't come out until I was 25.
[00:42:42] And, still after that, it took my family and friends a long time to catch up with that reality. And, uh, now I feel very comfortable that everyone in my life is kind of comfortable , with my sexuality and, um, I have a very strong LGBTQ community, which certainly helps. But I do think it's a huge human rights issue.
[00:43:32] I think that, um, I, somehow, I, in high school, I, I didn't get to take Sex Ed, and, uh, I'm not sure whether that was because my family moved around a lot. But I suspect that it had to do with my disability. And, uh, My guidance counselor didn't, it didn't occur to her that I might need to take that elective. It's just little things like that.
[00:44:18] So I mostly educated myself by talking to people and by, um, experience and by. trial and error, but I think, you know, there's a lot that could be done in the school system to kind of encourage sexual awareness for and by disabled
[00:44:52] youth.
[00:44:54] Pam Uzzell: Right. And just talking about sexual awareness is so [00:45:00] controversial at this time in schools anyway, but I think that that was a really valuable part of your book is talking about your gradual realization that you are falling in love with women and yeah, talking about that, um, you have a very powerful voice and I'm really happy that I read your book because I've thought about it.
[00:45:30] I read it several weeks ago and I've thought about it ever since. even in just ways that I interact out in the world. And I'm hoping that you can tell people where they can find out more about you, your book, and you have other writing out there, which is also really powerful. So where can people find out more about you and your writing?
[00:45:56] Effy Redman: Oh, first of all, thank you so much for your amazing reaction to my book. And so I'm so moved that you found it powerful. And people can find me on my author website. WWW at Effy Redman dot com. At E-F-F-Y-R-E-D-M-A N.com, and I'm also on Instagram @effyredman38 and on Facebook at, uh, Effy Redman, and I'm on LinkedIn, too. So, and, and the, the link to on website
[00:46:58] there's a contact section that people can find out how to contact me.
[00:47:07] Pam Uzzell: Oh, that's good. I'm glad you're open to that. Effy, it has been so nice to meet you and talk with you, especially after reading your book. And I know this is going to really impact a lot of people and help a lot of people to read this book.
[00:47:23] It helped me. So thank you
[00:47:25] Effy Redman: Thank you so much. That, that really means the world to me that, um, that my book just might help you, moved you.
[00:47:37] Pam Uzzell: It really did.
[00:47:42] You're listening to Art Heals All Wounds.
[00:48:08] Thank you so much to Effy Redman for being on the show to talk about her memoir Saving Face. I've thought about this book a lot since I read it. And it's really informed my thoughts about disability and family relationships. I'll put all of Effy's info in the show notes so that you can learn more about her and her book.
[00:48:30] Do you have a story to share about the role art and creativity play in your life? I'd love to share it on the show. Just go to my website, arthealsallwoundspodcast. com, and click on the big widget on the homepage that says, leave Pam a voicemail. And while you're there, if you feel like you're able to support this show, I appreciate any donations.
[00:48:54] You can click on the link or the widget that says, 'buy me a coffee'. Art Heals All Wounds is completely independent, and anything you give helps me keep this show going. Thanks for listening. The music you've heard in this podcast is by Ketsa and Lobo Loco. This podcast was edited by Iva Hristova.