"If I'm In A Wheelchair, At Least I Need Good Hair"

On the inherent ableism of beauty culture, with disability advocate Jayne Mattingly.

“There are times where I'm scrambling to try and make myself look ‘well,’” Jayne Mattingly tells me. “I’m like, ‘If I'm in a wheelchair, I have to be pretty. I have to cover up all my acne, or at least I need good hair.’”

I call this “cosmetic coping.” Mattingly calls this “body grief.” It is both. It is the intersection of ableism and beauty culture, and Mattingly — as a newly disabled and chronically ill eating disorder recovery coach, disability advocate, body acceptance influencer, and the writer of the Body Grief newsletter — is uniquely suited to take us there.

Ahead, find our (deep! meandering! made-me-cry!) conversation on healing from eating disorders, navigating disability, anti-aging as a form of ableism, fear of “unwellness,” and how Mattingly worked through her beauty culture conditioning — and still finds joy in skincare.

Jessica DeFino (me): To start, can you tell readers who you are, what you do, and how you got to where you are right now?

Jayne Mattingly: My name is Jayne Mattingly. I am the CEO and founder of Recovery Love & Care. I have a Master's Degree in Clinical Mental Health Counseling. I worked as a therapist for a while and I specialized in eating disorders. I noticed a really big gap within treatment with eating disorders and body image, and a really big misunderstanding within therapists. I don't know how many people know this, but when you're going and getting your masters or PhD or whatnot, and you're working with psychiatric or psychological cases, there's no specialty [for] eating disorders — you have to seek that yourself. The same goes for doctors. And so, because I was specializing and seeking supervision under eating disorders, and seeing only eating disorder cases, I was like, there's just a really big gap within treatment. The average person who goes to treatment goes back eight to 10 times. That's not a person problem — that's a systemic problem, right? And so I looked into how else I could support clients, and I came across this model of recovery coaching. So I created my own thing, because I'm really serious about ethics, scope of care, telemedicine, HIPAA compliance — I really take that very seriously. And so I kind of molded what was there and made it my own. And then once I became really sick with my illness, I started working on training other professionals. That's where I came up with my RLC University. It's a really rigorous training program where I train other professionals to work with body image, and alongside eating disorders, alongside therapists that are part of a team. And I supervise professionals as well. I got into this because I myself had an eating disorder. And I realized that I really wanted to work with this population. I just wanted to help people, and I was far along enough of my recovery that I was like, I can do this. Now I'm a decade in and it's great. I'm really privileged to have come this far in my recovery and been able to hit that 10 year mark. That's huge.

JD: Especially considering the statistics that you just threw out about how many times people typically go back and forth.

JM: It's interesting because like, a lot of people are like — and I actually used to say this — “If I can do it, you can do it.” And I just think that's total bullshit. I really used to say that and I really used to believe it. But then I started seeing other cases, really acute stories with serious trauma, and I was like, I was privileged enough to not have that. Like, I really didn't have like serious, big trauma. I had access to care. I had really supportive people around me. I kind of had the perfect path to recovery once I admitted I had an eating disorder. And I was so motivated. I think all of those things is what got me here. And I just don't think everyone has that path. And it's okay. Full recovery is possible, it just might not look like [mine]. I mean, I was like the epitome of privilege in so many ways. I was thin, I was white, straight, able-bodied. Now I'm disabled, but [at the time of my eating disorder recovery] I was just so privileged.

JD: I love that you bring this up, because I get a similar reaction to some of the newsletter content I put out: People who are in serious pain due to beauty culture — people who feel ugly or not pretty enough, despite adhering to the current cultural definition of “beautiful” in many ways — have a hard time understanding that even though they are in legitimate pain, they are also privileged within this area. I think a lot of people have a hard time understanding that something harming you can also privilege you. How did you start to grasp that?

JM: To be honest, I'm just just gonna throw it out there: I was so privileged, I didn't even have to face that during my recovery. It was also 2010, not 2020. Now I’m so awake to [the concept of privilege]. It might have been different ten years later — I might have felt invalidated. I don't know. I do see this a lot with my clients: They feel invalidated when they see people online saying like, Eating disorders aren’t just a thin white girl thing. Shut up. They feel “othered.” But eating disorders are serious illnesses. I mean, they kill people. It's very, very real. And there's no hierarchy of suffering. Someone else's suffering doesn't take away yours. Usually, what I try to say is, two things can be true at true at the same time. But I think like a big part of that struggle is understanding that we all have been told that we are supposed to be smaller or take up less space in some way or another.

[EDITOR’S NOTE: For more on this subject, I recommend reading this Aubrey Gordon piece on internalized dominance.]

“There is no hierarchy of suffering. Someone else's suffering doesn't take away yours.”

JD: Yes, totally. Almost all of us have internalized the cultural messaging that tells us we aren’t thin or beautiful enough, even if we conform to the current body and beauty ideals. The difference is, I guess, that while a thin person might feel like they still aren’t small enough, and may engage in destructive behaviors to become thinner, they still actively reap the societal rewards of thinness. Things like not being discriminated against in the workplace for their weight, or something as simple as always fitting into the airplane seat. And because those things just feel “normal” to a thin person, they go unnoticed. It’s almost like it’s impossible to tune out the diet culture conditioning but very easy to tune out the privilege. In my work, I often talk about eating disorders as a potential consequence of beauty culture — as in, disordered eating is one of the health issues that beauty culture can exacerbate. But I always want to be really careful to specify that this is not only a beauty culture problem. There are so many factors that go into triggering an eating disorder, from control to trauma to genetics, all of it. I'd love to get your insight on how much beauty standards feed into eating disorders. It’s not the whole picture, but would you say it’s an important part of the picture?

JM: I love this question. I've had this conversation with a client who has a serious eating disorder, as all eating disorders are. And she was like, If I were on a deserted island, would what I care about? Would I still have an eating disorder? And the reality from my expertise is: Yes, she would. And she was surprised by this. And I was like, so much of her story, and a lot of people's stories, is about numbing. It’s about not feeling the hard feelings. It's about the temperament that we're born with. It's about genetics, it's about trauma. And so, if you took this client and put her on an island, she would still have an eating disorder. I don't think it's all beauty culture.

JD: I think that’s so important to understand. That even if an individual’s disordered eating is influenced by beauty culture, there are so many other factors at play that contribute to that outcome. It's not only the outside world that’s influencing this. And maybe that gives us a little more agency in how we heal?

JM: Yeah. Would it be easier for her to recover on a desert island? Yeah, it would. It would be easier for her to recover. I do think that. I [stopped reading] magazines years ago [to remove some outside influence and aid in my recovery]. People take social media cleanses. There are all these things that we can do to be stronger in our recovery, but that doesn't take away the fact that there are other things that are very real in our eating disorders that will forever be there. Does that make sense?

JD: That makes so much sense. It touches on this issue from before, of healing from beauty culture as an individual. I always say that every individual experience of beauty culture is valid, but every individual “solution” isn’t. Like, someone may have this very valid fear of aging — because we live in an ageist society! — and their “solution” is to get a face lift or Botox or whatever, in order to make themselves as an individual feel better about their own aging process. But that “solution” actual compounds the problem for everyone else. Personally, I think the goal should always be: What's going to lead to liberation for everyone, not just me? Because it’s also really hard to heal as an individual when the culture around you is still sick. Do you incorporate any sort of work about dealing with cultural influences in your treatment?

JM: Yes, [popular culture] is a huge portion of our distortion with our bodies, how we treat our bodies, and we talk to our bodies, our relationship with our bodies. I think there are tools that can help, right? But honestly, one of the biggest things is figuring out the [foundation] of this pursuit of thinness, this pursuit of beauty, this external validation and working through our fear of fat and fear of unwellness — that's a big part of recovery.

JD: Oh, I love that. That’s exactly what I’m trying to do here with The Unpublishable, really: Exposing the fucked up history of beauty culture and the beauty industry as a way to encourage honesty about what we’re doing when we participate in this system and why. And I find that being honest with ourselves in that way ultimately encourages divestment from the system. Again, because so many people engage in beauty culture to feel better, right? And when you realize that the beauty behaviors that make you “feel better” actually perpetuate your own oppression and the oppression of others, it’s less appealing. When you frame lip injections as colonizing the body, it’s less appealing. When you frame breast implants and jawline fillers as creating an impossible ideal for “female” beauty and reinforcing the gender binary, they’re less appealing. When you frame diet culture as anti-Blackness, it’s less appealing. I’m curious to know more about the “fear of unwellness” that you mentioned, though. How do you define “unwellness” there — like, how does that fear show up in people?

JM: With health, there’s this ableist belief that if we aren't eating “right,” if we aren't “balanced” in all ways, if we aren't meditating and having the “clean girl” aesthetic or the “hot girl walk” or doing the things that will make others perceive that we are “well” — that we are “fulfilled,” that we are “healthy” — then I think we feel pretty unwell when we can’t get to that place. And lots of us can’t get there! I mean, I know I can't. There's this fragility of our health and our bodies that I think wellness culture and beauty culture want to hide from us — or wants to make us feel like we can fight it. I've always talked about this — it’s like a fear of contagion, you know what I mean? If someone understands that I'm doing my best to feed myself well, and take my medicine, and get outside, and meditate and breathe and all the things that they deem as “health” and “wellness,” but I'm still sick, what does that mean for them? It means it can happen to them.

“There’s this fragility of our health and our bodies that I think wellness culture and beauty culture want to hide from us — or wants to make us feel like we can fight it.”

JD: Yes, for sure. I also think there's something inherently ableist about this idea of health and wellness as having a perfectly functioning body — as defined by Western medicine of how a body is “supposed” to function. I think about this a lot when I talk about skincare, because I'm always talking about how your skin knows what to do: it self-cleanses, self-moisturizes, self-exfoliates — it has all of these built-in functions and so most people don’t need most products. And I'm always really concerned about how I say that. I always ask myself, Is this an ableist thing to say? At the same time, I don't think that having acne or eczema or any sort of skin symptom is bad or unhealthy. That's just how the skin communicates with you, and that communication is a function of the skin, too! That communication is a way for the body to try to tell you what it wants and where it needs support.

JM: I do agree with what you're saying — our bodies do know what to do, our skin does know what to do, but only if it is at its proper homeostasis. If it's not, our bodies will do their best, no matter what, to get back to homeostasis. That process might cause acne, pain, inflammation. It’s what I talk about as “perceived body betrayal.” A lot of people say, Oh, my body's betraying me. I'm gaining weight, I'm inflamed. I'm in pain, I have acne. I'm disabled, I'm unable to use my legs. It's betraying me. And the body is actually doing everything it can to find a homeostasis! It’s just that we don't like how it's doing it.

JD: Yes! And we don’t know why it’s doing it. The body, even just the skin, is like this infinitely complex thing, and when it does something we don’t fully understand — which, again, is often, because there is so much even our most knowledgable experts don’t understand! — we perceive it as “unhealthy” or “unwell” or “bad.” Because we've been taught this false idea of what a “good” body behaves like, what a body that doesn't betray you behaves like. So a lot of activism in this space tends to focus on “all bodies are good bodies” and “all skin is good skin”, that kind of rhetoric, and I don’t know how much that’s really helping. We’re sort of detaching from our individual symptoms, but we’re still very much attached to the morality of it all. I feel like we need to do the opposite: Like, stay attached to your body! Acknowledge your symptoms — your pain, your brain fog, your acne — as communications. Let them help guide you to the support you need if your body isn’t doing XYZ on it’s own, whether that’s using a wheelchair because walking is difficult, or using, like, jojoba oil as a moisturizer because your sebaceous glands aren’t producing enough sebum. What we need to detach from the morality part — the “good” or “bad” or “healthy” or “unhealthy” part. Because that morality part, that ethical ideal, is what keeps us focused on surface-level solutions — solutions that claim to make us look like we have “good” skin, or a “good” body. Because that ethical ideal only exists in relation to other people, right? So we stay focused on how our bodies are perceived by others, when we could be focusing on the support our bodies need from us — whatever that looks like.

JM: Absolutely. And it's so internalized. I notice it even more being disabled and being sick. There are times where I'm scrambling to try and make myself look “well.” I’m like, If I'm in a wheelchair, I have to be pretty. I have to cover up all my acne, or at least I need good hair.

JD: I get that. That’s classic beauty culture — it comes down to still attempting to embody the beauty ideal. When you think about it, the standard of beauty isn’t one static idea of “perfection,” it’s a range of socially acceptable features. So beauty culture tells us only a certain amount of deviation is OK, right? And that’s why so many of us try to balance out our perceived “bad” traits by highlighting our perceived “good” traits. It’s like, “If I can’t have this form of power, I at least need this other form of power. If I rank low on the social hierarchy here, I need to rank high over there.” That’s where you get things like “body positive” activists still being obsessed with having “perfect” skin. Or you feeling like you need to compensate for being in a wheelchair by having “good” hair.

JM: 100%. I talk about body grief and all these things, but I am not in any way immune to ableism. I mean, I'm very ableist myself and I fight with it every day and I try but it's hard, and I get tired.

JD: How do you think going through your eating disorder, and doing all of this internal work on body image and recovery and beauty standards — how did that affect your experience of becoming disabled?

JM: Thank you for that question. I don't — this might sound really bold, but I'm just gonna say it — but I don't think I'd be here. If it wasn't for my recovery, I don’t think I would have been able to get through these 14 surgeries, these devastating diagnoses and traumatic medical experiences, and just how it's changed me and my husband's life so drastically, if it wasn't for the skills and resilience I learned in recovery. Or I wouldn't be talking to you. I'd be very miserable, in a different place. You know what I mean?

JD: Oooh, yes. That really resonates. And that’s something that really inspires me about your work — it’s about dismantling beauty culture and diet culture and ableism not only as collective care, but as an act of radical self-care. Because who knows when we’re going to have a disabling event in our life? Who knows when we’re going to have a crisis of the skin or a crisis of the self, and will no longer be able to extract a sense of self-worth from our physical appearance or our physical abilities? It's so important to get these concepts and these skills into people's heads and hearts and hands before that happens. Like you were saying, there's this fear of being unwell. But what if instead of fearing it, we gave ourselves the skills to be able to handle it if and when it happens?

JM: What that does, is it allows us to be soft. It allows us to not harden through trauma. Honestly, if you were to ask me, am I glad I had my eating disorder and went through recovery? Yes. Because I'm alive now. I'm able to cope now. But I hate that I had to get hard, and go through all that shit, and now to go through this. And so if we can build these coping mechanisms and emotional wellness at a younger age or earlier on in life without having to go through the trauma, then that's great. Because our bodies — everyone becomes disabled. We get old.

JD: Yes! That is such a great example of the intersection of beauty culture and ableism. Ageism — anti-aging, the glorification of youth — is ableism. Do you have any lessons you can share, or coping mechanisms, or suggestions for people who want to learn how to be with themselves and their feelings and their bodies through whatever comes?

JM: If you have access to therapy or coaching or something of that nature — talking to an unbiased party, it could even be a pastor — but just talking to someone, getting it out, and then not just venting, but allowing your feelings to exist and sitting with them and understanding that emotions don't stay, they're never permanent, they change and they flow. And that's one thing I've really been able to come to terms with with with my therapy. I also have a very strict ritual of getting outside every day, breathing, and just counting my gratitudes. It sounds really kind of cringey, it sounds super corny to a lot of people, but I feel like there's this fine line between doom and gloom and toxic positivity when it comes to living with unwellness and disability and anything tragic, really. And so we have to sit in that. We have to find that middle ground, because when we're feeling sorry for ourselves, it gets dangerous — but if we're totally avoiding our emotions, and just being incredibly toxically positive, we'll never be where we need to be. So I think it's really about allowing yourself to sit in your emotions, validate those emotions, and count your gratitudes. That's something everyone can do, that everyone has access to. I think the other thing for me is finding support. I've been so privileged to have my mobility service dog, to have my husband and my family and my friends, to have my mobility aids. These are things that make my life bigger. Because if you don't have those things, it can get pretty small pretty quick. I think we've all experienced that with COVID, right? At some point or another, everyone in the country had to isolate, you know, and so we all understand that feeling of loneliness and the world being small. But people with disabilities and chronic illness — that doesn't go away once the pandemic lifts. It doesn't go away. We forever have to try harder to make our lives bigger.

JD: Oh, that's so beautiful — the idea of expansion, and community support as expansion. On that note, one thing I wanted to ask you about is the concept of “everybody is beautiful.” It’s often made out to be this expansion of beauty ideals, but at least from my perspective, it’s not very expansive. It’s kind of just reinforcing the idea that in order to be happy or feel worthy, you must also believe you are beautiful. Which is very hard to do while immersed in a culture that constantly tells you you’re not beautiful enough, whether covertly or overtly. I read an interview with you in the Body Type newsletter the other day, where you said:

[The] sentiment of, “Don’t love your body for what it looks like, love it for what it can do” … that’s really problematic, because our bodies eventually stop doing, so when mine stopped doing, I was like, “What now?”

And so, I’m curious what your relationship is to beauty and loving your body. If you don’t love your body for what it looks like or what it can do, how do concepts like “everybody is beautiful” and “all bodies are good bodies” fit into that?

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A post shared by Jayne Mattingly, MA (@recoveryloveandcare)

JM: This is a really good question. I have always been that girl that is obsessed with products: skincare, makeup, beauty, hair — so much so that like when I was 10, I was wearing eye creams and like, loved it. There was joy in all these things, right? And it turned into probably an unhealthy obsession. It's a joke with my whole family actually. I was pretty much roasted at my wedding, it was brought up in all the speeches. Jane loves her products! Four years ago, when I was diagnosed with my illnesses, I'd get a spinal tap and then for a reward, we would go to my favorite skincare store. I would get oils and I would get crystals and things to make my face plump and shiny. So it really is a big part of my life. And it's something that I have really improved on, right? I don't really wear as much makeup anymore. And when I do, it's very minimal. But I'm obsessed with my skin looking perfect.

JD: I see this all the time, especially with people who are in the body activism space. You sort of start to deconstruct all of these cultural ideas, like being afraid of being fat, and start to embrace your body — but what happens is, a lot of times we just shift our obsession with appearance above the neck. Same ideals, different body part. And honestly, I think that shift can be useful for a while, because everyone needs coping mechanisms. The thing with using the tools of physical, standardized beauty as a coping mechanism though, is that there’s a high likelihood that it will start to negatively affect your health and your quality of life the deeper you go. The products disrupt your skin microbiome and skin barrier. Focusing on the physical self and “perfect skin” adds to anxiety, depression, dysmorphia. We turn to these beauty behaviors to cope with the challenges of life and it feels like it helps at first! You know, you keep getting that immediate dopamine hit — from the facial, from the serum, from buying new products. Meanwhile, long-term, it’s negatively affecting your physical and mental health, and you need to use more to cope with that. It’s a cycle. But that initial dopamine hit is powerful.

JM: I'll be honest: My 14 surgeries have been to handle and control this diagnosis of Ehlers Danlos Syndrome. It's really affected my neurological system. I've had stents put in my brain, I've had a lot of metal in my spine, serious instability issues, and they could not be avoided. The surgeries were really, really needed and serious. And now it turns out that I have a really serious metal allergy, and so they've been working on removing the metal. And yesterday, I just had my appointment, and my neurosurgeon was like, We can't take out the rest. They're all in places that would be way too risky. And I will now be going to chemo [for the rest of] my life. It’s just heavy, heavy stuff, you know? I am in a wheelchair now, and I have all this heavy news, and it’s kind of the end of an era — closing the book on these surgeries, right? I'm so happy about it, but I'm also like, Wait, there's no fix. I just have to live with this. I'm going home this weekend and I urgently messaged my hairstylist. I was like, I need to get my hair done. Like, I need to get it highlighted. I can't go with roots. Like, God forbid I'm that defective! And so there's a big part of me that holds on to it. I get this serious dopamine hit from looking the way I want to, in a way I can control, and I think that's a big part of beauty culture. I also think it's a huge piece of my OCD, and I don't know it will ever go away, right?

“I get this serious dopamine hit from looking the way I want to, in a way I can control, and I think that's a big part of beauty culture.”

JD: When I hear you say that though, I think of how beauty functioned in the world before it was industrialized. Like, beauty has always been a part of human expression! People have always wanted to, you know, put on eyeliner and do their hair. Beauty wasn’t always this oppressive standard being forced upon us. It is inherently human to want to express yourself and look a certain way! And what I hear when you're telling me all this, is that you have done so much inner work, you have done so much work around body image and beauty standards, and you have found these few beauty treatments that still bring you joy, even after deconstructing your conditioned beliefs about beauty. And that feels like really healthy and beautiful to me. That’s the goal, actually. The goal is not to abandon all beauty rituals and grooming and pampering and physical self-care and expression forever! The goal is abandon beauty standards that do not serve you and instead engage with beauty in a truer, more authentic, more life-giving way. To find beauty beyond beauty standards. Beyond the beauty industry. And you’re doing that.

JM: Thank you for saying that. It's something I grapple with a lot. One thing I'm learning is that I present totally different when I'm in a wheelchair. You know those like, thin women [on social media] who post videos like, “This is me standing up and this is me sitting down,” and they’re contorted to show fat rolls?

JD: I know exactly what you’re talking about.

JM: I realized yesterday, and I started tearing up, I was like, This is me all the time. Turns out, that's rooted in ableism to say like, “Hey, when you're sitting down, you're still worthy!” I have to sit down. So when I was getting out of the shower, I just sat in my wheelchair, fully in the nude and looked at the mirror and just took myself in for 10 minutes. And I cried. But it wasn't hatred. It was just like, Wow, like things are different. And this is me. It’s not my worth. You’re gonna change, she’s gonna change, my body will continue to change — but it helped to take myself in a little bit and be like, Yeah, this is hard. This is really hard. I'm grasping at things to make me feel better, when in reality, this is just really fucking hard.

JD: That’s such a perfect note to end on, because — with so much of your work and my work too — there really isn't a pretty, easy solution. There isn’t an end point to visualize. People always ask me like, Well, what do I do? What is the point of doing this work, of deconditioning? I think the point is just to keep deconditioning and deconstructing — I don't know that there even is an end point! No one's gotten there yet! Maybe the point is just, you keep working at transcending your conditioning and changing these systems in order to become the truest, freest version of yourself that you can be, and in order for others to be able to be truer and freer, too. And the process of becoming truer and freer never stops. And the work of transcending is really hard, always. And you're a human. And that’s what being human is.

JM: That's what it is, right? That's what it is with body image for me. I don't think there will be a day where I'll not be working on it, you know? But that’s in regards to body image — in regards to my relationship with food, that's actually pretty healed! So you know, certain things can be healed. Certain things are a destination. Most things are a journey.

This interview has been edited for clarity.

Subscribe to Jayne’s newsletter Body Grief here.