Title:
Author Jayne Mattingly talks body grief, disability advocacy, No Back Gap
Subtitle:
Show Topics include how Jayne Mattingly is Shaking Up Disability Advocacy, Trendy Adaptive Jeans, and Disabled Voters for Kamala Harris
Transcript:
Alycia Anderson: Welcome back to Pushing Forward with Alycia. I’m Alycia Anderson. Y’all.
Jayne Mattingly: I’m Jayne. It’s nice. Thank you so much for having me.
Alycia Anderson: Jayne, welcome to the show. Let me give a quick little introduction of who you are.
Jayne Mattingly: Please.
Alycia Anderson: An amazing author, disability, body image, and eating disorder advocate. She is the founder of The “And” Initiative. She’s a digital creator. She’s got a ton of followers on Instagram. She’s got a book coming out titled, “This is Body Grief” in 2025. She is the co-founder of Disabled Voters for Harris. Love that. And she’s working on an adaptive jean project. So lots going on.
Jayne Mattingly: Yes. A lot going on.
Alycia Anderson: Welcome to the show.
Jayne Mattingly: Thank you so much for having me.
Alycia Anderson: You know what? I forgot one thing too. She is the most beautiful artist.
Jayne Mattingly: Oh my goodness. Yeah.
Alycia Anderson: Acrylic. They remind me of my brother’s paintings. And they’re gorgeous.
Jayne Mattingly: Thank you.
Alycia Anderson: Multifaceted amazing beautiful woman.
Jayne Mattingly: Oh my goodness. Thank you so much. Yeah. If you like pink, you might like my paintings.
Alycia Anderson: Okay. There’s so much to talk about. I actually don’t even know where to start. So I think we should start with, can you share a little bit about your journey? Your relationship with disability. Maybe we can start there.
Jayne Mattingly: So I started this journey as a disability advocate because my body had me do that. I have a master’s in clinical mental health counseling. I talk about being like resigned from hustle culture. That is something that I really left in the past. And I worked with eating disorders and body image. And that’s something that really spoke to me because I had an eating disorder starting at the age of nine. And it was normalized because I looked quote unquote normal and it was very misunderstood. And so I really got involved in body image advocacy and eating disorder advocacy. And then I noticed people with eating disorders really talked about grief a lot, like missing the body that they used to have, but also missing the life they used to have while they’re in their eating disorder and then in recovery. And so I started to come up with this language of like, this is body grief. And then six years ago, I found myself completely sick. My sight went, I was at a bar class like a Pilates bar class and I was sent to the ER and many ER visits later, lots of dismissal and gaslighting, medical gaslighting. They diagnosed me with a rare neurological disease, intracranial hypertension. And I received my first two brain surgeries after that and things snowballed into effect. I was diagnosed with my genetic illness, Ehlers Danlos syndrome, which you know, really shows up when we’re younger. And it really makes sense now we’re like, Oh, that’s why my elbows and knees were popping out of place. And this is why that happens. But my original neurological disorder definitely pushed that out. So a lot of people can be diagnosed with Ehlers Danlos syndrome after they get pregnant or something stressful in their life happens, kind of pushes out that mutation and they really start experiencing things. So in the past six years, I’ve had 19 brain and spine surgeries, a total hysterectomy, and I’m now a wheelchair user and I have a service dog. My life has completely changed. I went from hustle, hustle, hustle. I can do it all. White woman in her twenties, like thinking she knew everything too. Oh my gosh, no, I don’t. And this is body grief. And when I started talking to more and more people, it was like, in the chronic illness space and the aging space and menopause and all of the things, everyone was like body grief. Okay. And since then, I’ve written a book and we’re doing the damn thing.
Alycia Anderson: I love it doing the damn thing. Okay. So you said the term many times, you’ve coined this term, body grief. I want to hear from you what this term means.
Jayne Mattingly: Simply accepting the loss of living in a body. So body grief is universal and I want everyone to hear that disabled, non-disabled, no matter your age, identity, body grief is universal. And I think oftentimes, which is one of the phases of body grief, there’s seven phases, which I’ve studied through many case studies and storytelling. Is that one of the phases is dismissal. We don’t think we, we don’t think we we dismiss everything. It’s internal dismissal due to systems of oppression due to internalized ableism all of the things in the world. And so we are grieving our bodies. We are grieving what we used to be able to do. One thing I used to shout from the rooftops at my events with eating disorder recovery before I was disabled was, love your body for what it can do, not for what it looks like. And then my body stopped doing. And I was like, well, what now? And so I realized how ableist that was and the grief behind that and the heaviness behind that. And so that’s truly the most simplistic definition we can give.
Alycia Anderson: I love that. But I’m assuming it comes in and out of your life as well as your body changes. You correct me if I’m wrong, but I associated it to like coming in and out of your life and then you kind of readjust and master that and then something else could happen and you’re kind of in and out like an ebb and flow.
Jayne Mattingly: Absolutely. It’s a constant journey. It’s nonlinear, multi-cyclical. And we can be at one phase of body grief at a time. We have dismissal, apology, shock, fault, fight, hope/hopelessness, and then trust. And it’s not like we just end at Body Trust and we’re grieved. That’s the thing is when I was writing this book, you know, and I pitched it to my publisher, Penguin. I was like, this is not a bandaid. And I know people want that. Right. But it’s not we don’t just become grieved. We we are like, I’m healed from this. It’s constant. And we have so many body grievances that we can be grieving. Multiple things at multitudes of times and have one foot in one phase and another foot in another phase. And so the framework and the book is about really normalizing that, giving language to it, giving coping skills, giving real-life stories to it of all facets of life. And bringing humanness to saying like, this is body grief. Kubler Ross’s stages of grief were made for the dying. And we often look at those stages of grief for the living. But this is for the living with a slowly dying body.
Alycia Anderson: I feel like also as disabled people trust in navigating our bodies sometimes feels daunting. But when you achieve even a small amount of it in some way, it’s super powerful. So I love that that last section is trust. That’s very foundationally empowering. That’s really awesome.
Jayne Mattingly: Absolutely. And I think it’s a two-way street, right? In order for us to trust our bodies, our body has to trust us. And I talk about this thing called perceived body betrayal. And we say, Oh, my body’s betraying me. But really if we look into it, our bodies are never betraying us. They’re doing everything it can to find a homeostasis. And the symptoms of that, that’s what sucks. And so it’s our responsibility as humans to grieve, feel the feelings, use the coping skills, but still be compassionate towards our bodies. And that’s usually where we slip up.
Alycia Anderson: So that brings me to a quote on your Instagram that I have in front of me. It’s a quote that is on body grief and perceived body betrayal. “I’m sorry, your body is causing you so much pain when all it wants to do is keep you alive.” And I sometimes check myself like on a birthday or something like. When it is my birthday, like I grew up with my dad going, you made it another year. You weren’t, you know, your body’s working.
Jayne Mattingly: Yes.
Alycia Anderson: It’s working for you. It might not look the way that is typical, but it’s strong and it’s healthy and it’s adapting and it’s figuring this stuff out. And like that path. So I love that quote because it speaks to me about the layers of all of your body. Just wanting to like, support you and keep you alive. It’s beautiful.
So can you share a specific moment maybe Challenge or a story that was in your life that you’ve had to either overcome or feel like power in your own body grief?
Jayne Mattingly: The first one that comes to mind is my wedding day. It was actually right when the vaccine came out. And I had just received, I think it was like my 12th surgery. It was a big fusion surgery at my cranium. Like it was, so it was a big surgery and everyone was, you know, in lockdown for so long. And then I kind of felt like I was grieving. This is going to sound messed up to some people, but I’m just going to say it. I felt like I was grieving the fact that as the world opened up, I was grieving the fact that not everyone was going to be living the same life that I do all the time, because I was disabled and I didn’t have proper mobility aids at the time. I lived on the third floor apartment. And because of medical bills and all the things and systems of oppression, which I talk about, going hand in hand with body grief. It wasn’t an envy thing, but it was like, I’m sad because I felt the biggest sense of community in the most messed up way with the pandemic. And then all of a sudden the world started opening up and we left disabled people behind. Including with a lot of things. And so when I started and I got married, it was like, I was just, I was like debuting my disabled body in like a visual way to people that didn’t understand disability to my family, to my friends, and I remember thinking so much like internalized ableism and shame being like, I’m not even 30 and, what am I doing? You know how I have a walker, my 90-year-old grandparents like have more mobility than I do at my wedding. I was just grieving with so much internalized ableism. And then I realized having my roller helped me. Actually have pride and actually move me forward in life. And that’s when it like truly clicked for me that body grief was an experience for me as well. And not just for everyone else ’cause I’m not superhuman. But I felt like I very much was being left out, of the conversation and then finally got my mobility aid and I was like, okay, I can do this.
Alycia Anderson: I don’t think that’s a bad thing to say at all. And I think it’s actually pretty profound. And I love it that you translated your mobility device into something that’s going to allow you to push forward into, all of this advocacy work that you’re doing, which is incredible. So can we shift a little bit?
Jayne Mattingly: Absolutely.
Alycia Anderson: Can we talk denim?
Jayne Mattingly: Oh yes. Oh my gosh. Oh my goodness. I’m so excited about this. So Sierra Rogers is just an amazing business owner, author. She just came out with the book, “The Outsider Advantage”. We have the same publisher, Penguin Random House, and that’s how I got in touch with her. And also like she talks about being an outsider and how it lifted her up and she came from home and security, et cetera. Now, she’s so successful with her brand babes, but now she also has ‘No Back Gap’, which is a denim line that, you know, that gap, a lot of people, if they like have curves, they have a gap in the back that like, it’s and it doesn’t fit a woman’s body. Right? So she got rid of that. She fixed it. And these are upcycled hand-tailored, pre-washed beautiful jeans and denim and shorts. And I was like, wait, so the back part’s like really stretchy, but you can’t see. And I was like, that’s that’s like the curb cut effect. But, but without her realizing it, like that’s helpful for disabled people. As a wheelchair user, I hate jeans. But I always want to wear rigid jeans because it’s in, it looks cool. And so I mentioned it to her and she was like, Oh my gosh, let’s make it more adaptive. And. First of all, to be seen by someone like that with such a huge platform and for her to be like, let’s just do this was so exciting. So now we have this adaptive jean and we’re really gearing this towards people with non-apparent and apparent illnesses and disabilities, people with autism or might experience sensory issues as well as endometriosis and bloating to also dexterity issues and anyone with amputations, et cetera. So there’s an anchor for your hand and then there’s clasps that have three different attachments so you can adjust your waist and it looks like the exact same jean, but here’s the catch. This jean is made for everybody. It’s at the forefront of ‘No Back Gap’ and it’s helpful for disabled people. So that’s why the curve cut effect is so helpful. Right. Where it’s like, if we consider disabled people first, we make the world better for everyone. And so what I love about this jean is even if you’re non-disabled, even if you think I don’t need these jeans, these jeans are going to benefit you because if you had a big meal, you can go and adjust your jeans. Or if you break your finger, you’re going to need that anchor. And so a lot of other clothing lines have adaptive clothing and like a little corner section of their website. This is at the front and center of ‘No Back Gap’ and everyone can buy the jean, but it’s an adaptive jean.
Alycia Anderson: So I love number one, that there’s options because I love wearing jeans too. And it’s really hard to find the right fit that closes correctly on my waist. And it drives me nuts. So that’s amazing. I can’t wait to check this out.
Jayne Mattingly: So exciting.
Alycia Anderson: You mentioned the curb cut effect. Can you just explain that a little bit more for anyone that doesn’t understand what that, that term means.
Jayne Mattingly: Yeah. So the curb cut effect think about a curb cut when you’re going on a sidewalk and there’s that cut usually made for wheelchairs. So it doesn’t have, you know, a border if it’s an accessible sidewalk and the curb cut effect is basically saying when we consider people, disabled people and people of color first in architecture, in fashion, in culture, the world is better. Because of that. And so an example is with the curb cut. If you’re with a stroller, if you’re rollerblading, if you are having a bad day and you’re not looking down, the curb cut is going to help you if you are aging all of these things, it’s not just for disabled people. So I think the curb cut effect is so helpful for non-disabled people to understand because it’s like, when I talked about inaccessibility here in Charleston, South Carolina, people are like, well, you’re just one wheelchair user. We’re not going to have a bunch of wheelchair users. And I’m like, well, maybe you would if you built for us and that’s the curb cut effect.
Alycia Anderson: Thank you for explaining that because I think the curb cut effect, the theory gives a really good visual of how innovative accessibility is. And I don’t think that if you don’t have a disability, you’re not in the space. You might not be seeing through that lens. So I think it’s important. And the jeans remind us one more time what the website is for the jeans.
Jayne Mattingly: NoBackGap.com. And again, they are tailored black-owned business. Now, you know, collaborating with me as a disabled person and they’re upcycled jeans, like Levi’s rigid jeans like disabled people can be sexy. We don’t have to wear like these adaptive clothing. That’s all stretch or all, you know, like I just wanted, we wanted something that looked like everything else. We didn’t want separate, but equal.
Alycia Anderson: That’s the next, like, really needed piece of adaptive wear is it sexy. Like I have worked specifically with brand underwear brands that are globally recognized. And I’ve done some consulting with them on like bras and pants. And I’m like, we need lines that are hot, that sexy. That when I put this on, I don’t feel like anything, but and you know, it’s hard not having products that you put on. You go, wow, I look really, really good. And I look hot. Like I look sexy and this was made for me. So, okay, should we shift to politics?
Jayne Mattingly: Yeah, let’s do it. Perfect segue.
Alycia Anderson: Love it. Panties to politics.
So you co-founded an Instagram page movement that is titled Disabled Voters for Harris.
Jayne Mattingly: Yes.
Alycia Anderson: Talk about it.
Jayne Mattingly: So we’ve seen all these zoom calls, right? We’ve seen, when with black women who is led by Joe take a ED and we’ve seen then the white women’s call with Shannon Watts, and we’ve seen the white dudes call and all of these things. And so I was heading to a disability pride event where I was speaking. And I just put it out on Instagram. And then Cassidy Huff, who I know is going to be on this podcast soon. She reached out and she was like, let me help. And so we pushed it out. And then the next morning we were we were connected with an amazing account Ought to Ask Us. And they had also had the exact same idea for autistic individuals and people with neurodivergence and disabilities. So we have come together and Leslie Templeton, who is an amazing person who works in politics and disability in DC, she has helped us so much. And since then we have an amazing planning committee. Dr. Akila we have from Change Cadet we have, Mia Ives Rubley. We have so many people and we are creating our first big Zoom call on Friday, August. Second 7 p. m. Eastern standard time, but there’ll be many others. And this includes two panels of, and we’re talking about voter rights and disability voter rights and mobilizing disability voters. And the thing that’s so cool about this is the Harris administration. They’re listening to these Zoom calls and she’s informing her policy based off of this. And so I spoke with someone on her campaign and they were like, “We see disabled people. We want you to keep speaking.” And now we are at the same, like we went, I was at a meeting last night with jotaka eaddy and all of the amazing faces of all of these Zooms. And we have a seat at the table for the first time in a long time.
Alycia Anderson: That’s amazing that they see you already too. And that this is gonna trickle in there.
Jayne Mattingly: We’re talking about filling in bubbles. We’re talking about all of the things. We have a chat, we have a moderator. We’ll have ASL and CART services as well. So everyone is welcome. And if they pre-register, I’ll make sure you have the link for all of our other Zoom calls.
Alycia Anderson: Awesome. I love it. We are going to definitely leave all that information in the show notes. And I think this is really powerful advocacy. It’s been for me and my platform, my goal to kind of get involved in legislation and I was recently appointed a seat in the California diversity insurance committee. They’ve never had a disabled person in a seat. And, even entering that room, you feel the power and the need of our voices to be involved in politics, policy, all of it. So congratulations on being really forward-thinking.
Jayne Mattingly: Yes, you as well. I mean, I think that’s the power of disabled people, right? Our voting block is so powerful. And so the difference between the Zoom call and the other ones is like, we are going to be really focusing on education and community where the other Zoom calls are focusing on fundraising, but we also want to prove that we can fundraise. And so for those disabled folks who have the financial power, show up and do it. And we want to show that we’re a powerful voting block.
Alycia Anderson: Inclusion in just like showing up in the numbers and the masses that actually represent our community. So that’s really cool. So I’m going to put you on the spot.
So we end the show every time with a pushing forward moment from our guests.
It’s a little mantra, a little nugget of something that can gift away to our community to empower them and in their space.
Jayne Mattingly: Yes. Honestly, when it comes to body grief, we all have it. I see you in your body grief. I hear you no matter where you are. If you’re fighting it, if you’re angry, if you’re mad, if you’re sad, if you’re hopeful or in that despair of hopelessness and you feel like you just can’t get out. We are here. Other people are here. We see you. You are not alone. Just stay here, find your anchor, whether that’s your cup of coffee in the morning or your pet or your cat, or just looking out the window and you will get through this because the world needs you.
Alycia Anderson: You are an amazing woman. We’re going to leave all your information in our show notes. Everybody can find you and thank you to our pushing forward community for showing up every week for us. I see you. We’re growing like crazy. I appreciate you.
This has been Pushing Forward with Alycia, and that is literally how we roll on this podcast. We’ll see you next time.