FULL PRESENCE w/Carey Cox

In a world quick to label and limit, Carey Cox defies definition. Actress, advocate, playwright, and now mother, Carey brings authenticity to every role she inhabits—on screen and off. Known for her portrayal of Rose Blaine in Hulu’s The Handmaid’s Tale, she’s not just acting; she’s rewriting the narrative. Diagnosed with Ehlers-Danlos Syndrome, Carey doesn’t hide her disability—she leads with it. As the final season of The Handmaid’s Tale comes to a close, Carey enters a new chapter, both professionally and personally. With the release of her indie film Where Did The Adults Go? and the arrival of her first child, Carey’s voice in the industry feels more vital than ever.

ALLIÉ: Thank you, Carey, for joining me here to share this space and share your story.

CAREY: Well, thank you. That was so kind. That was such a nice intro.

ALLIÉ: It’s easy to give nice intros to nice people doing amazing and incredible things.

CAREY: Thank you. I always like to say that it comes after a long history of many people working to make spaces for people like me, so I always like to acknowledge that this has been something that people have been working at for a long time. I feel bad because, up until I started identifying as a disabled person and a disabled actor, I wasn't really even aware of all of the years of advocacy and the climb that's been happening for so long to be welcome in not just acting spaces and storywriting spaces, but every space as disabled people. So it's very kind to get to wear these descriptions now, and I owe it to a lot of people who came before me.

ALLIÉ: Carey, your journey as an actor has spanned stages and screens, but The Handmaid’s Tale marked a cultural moment—especially with the introduction of your character, Rose. What did it mean to you, personally and professionally, to step into Gilead with a limp, a cane, and your full self?

CAREY: Oh, gosh. Well, it was amazing. My history with The Handmaid's Tale goes back to when I was a teenager. My mom gave my sister and me the book, and it was my sister's favorite book. My sister passed away about 10 years ago, so getting to do this journey now, I often think about her and what she would be saying about this and me getting to be a part of it.

It had such an impact on her at the time and then had such an impact on me. I was somebody who was a little scared to watch the show at the beginning because of how relevant it is and because I’m a very sensitive person. So I had to do a big catch-up. I’d only seen a little bit of season one when I had the opportunity to audition, and so I did this long binge in my room—basically crying for weeks, just watching this show all at once. And that was such a great way to absorb it because I couldn’t escape the world. I was fully immersed in this world for so long, and it was all I could think about and all I could talk about.

And it means so much because Rose doesn’t exist in the book, and the TV show covers so much—it goes so beyond this incredible book. And there’s a scene earlier in the show that I think a lot of people may have missed, where you see a lot of disabled people being executed in a flashback to the beginnings of Gilead, when June is first picked up and becomes a Handmaid. And that was a question that was then unexplored in that way. We didn’t see a story specifically of what happened to specific people (with disabilities)—we just knew it was something that existed in this world. And it’s something that has happened. It happened before and during World War II.

There’s a wonderful documentary—Disposable Humanity. My husband is a producer on this. Everybody should check it out. It’s about the eugenics movement and the execution of a lot of disabled people at the beginning of and right before World War II. And it’s something that’s forgotten a lot—about that part of history. So then getting to explore that through Rose, who is in this privileged position, and the audience has been left to kind of draw conclusions about her place in society and how she was able to survive and get to this point… It’s kind of the unexpected story. It’s more complex than you would think that a portrayal of a disabled person in this world would be, because it’s that story of “What’s right for me doesn’t work for thee.” It’s the exception to the rule. It’s what privilege can do for somebody.

So it’s very interesting. And the audience—it’s been very cool to read about the conclusions that fans have drawn, the connections that they’re making, and what Rose’s life in Gilead would look like if she wasn’t privileged then, versus what her life in pre-Gilead America would have looked like. There’s a lot of discussion about that—What’s a better life for her? Does she enjoy privileges in Gilead that she wouldn’t have even in pre-Gilead America? It’s been very interesting to hear what people have to say about that. 

ALLIÉ: You were pregnant while filming this final season—a poetic parallel, perhaps, to The Handmaid’s Tale’s themes of birth, power, and identity. What was it like actually carrying a new life while portraying Rose in a world so deeply shaped by the politics of motherhood?

CAREY: It's very interesting. While I was going into this season and talking with casting and producers about how that would work and how long into the pregnancy I could film—because everything was lining up down to the wire towards the end—they worked with me so beautifully to make sure that I could film my final scenes before I was at a point where I couldn't travel anymore, because it’s filmed in Toronto and I live in New York. Luckily, it's a very easy plane ride, but there would have been a point when it would have been too dangerous for me to travel.

For my last episode, they allowed Joe, my husband, to come with me just in case we were to have a Canadian citizen. He was there kind of watching everything. And I just felt so lucky at the time that I had this team who was so willing to work with me, because an actor's job is difficult in that it's inconsistent. We never know when the next job is going to come. Everything is so up in the air. There's a lot of uncertainty, and things like locking down health insurance can be a little bit difficult. But the thing that is wonderful about it is the flexibility. My husband and I have been able to be home with the baby. We've kind of been able to set our own hours in that way. And then when we have a job, the flexibility there—of people being able to work with us and accommodate us—that's something that a lot of people don't have.

I've been reading horror stories about people being fired when they've become pregnant and a reason being given so they can't pursue any sort of legal protections. We have friends who have maternity and paternity leaves that are like two weeks long, three weeks long—if they even get them—or they're unpaid. You know, we don't do a ton to support pregnant people in our country. And then to play a character who, again, has privilege, but her powers are so limited. She really can't still speak her mind, even when she's with other wives in social situations. She doesn't fit in, and she feels meek and timid—to then have more power in a way because of being pregnant, or at least to have more visibility, and to feel like the pregnancy at least allows her more survival.

Again, nothing is simple. At the same time as the pregnancy giving her this kind of spotlight, there's this scene where it's almost like a Madonna treatment. I don't ever want to give too many spoilers, but she's definitely put on this pedestal as soon as she becomes pregnant. But then there's still so much vulnerability in that, because it's a society that—I mean, when we see the Handmaids give birth, it's their own home births. And the ritual of it puts women in danger. And the idea that women are seen as vessels for new babies is complicated. So it's power—but is it really power? I mean, there were so many questions and so many different things to explore. It made me wonder about my own place and my own identity, becoming a working person who was going to have a baby.

But one of the best things about being on that set is there are so many wonderful examples of people who've done exactly that. And one of my favorite days on set was when we were filming a big group scene. Again, it's aired already, but I don't want to spoil it for people who haven't seen it. But it was a day when I got to meet so many other cast members, and it was American Thanksgiving. So we were all sitting around having a Thanksgiving dinner and talking about pregnancy. We went back and forth talking about people's experiences having babies or being pregnant while filming, while on set.

It's such a common thing for actors to go through—and particularly on this show. There are so many examples of people who have done that, who've made it work. They have been filming and then run back to their trailer to pump or to breastfeed and then go back and shoot more scenes. Just the blending of life and art—it was very cool. I felt very lucky, and I was very protected. They really took care of me, especially when some of my pregnancy symptoms were getting a little hard to manage. I was so supported by everybody.

In particular, Yvonne. There was one time I had to go to the hospital because I had some pain that didn't seem normal. It ended up being normal—I mean, that's with so many things about pregnancy. I find out, okay, this is normal—it doesn't feel like it, but it’s okay. But she looked out for me, and she really advocated that I have a separate little space and an air mattress. She made sure—because she'd been through it herself—and she felt protective in that way. So everybody was wonderful, and I was very grateful.

ALLIÉ: You’ve spoken openly about transitioning to auditioning as a disabled actor. What was that internal shift like for you—not just professionally, but emotionally? 
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CAREY: It's like you suddenly find this sense of belonging, and this wonderful, vibrant world, and it feels like, why didn't I know this was here all along? But then the fact that you didn’t know it was there says something still about what everyone else is missing out on—and all of these wonderful, wonderful people who, I mean, disabled people in general—have a lot in common with parents in having to be flexible and creative and adapt. And that is a skill that so many people can benefit from. In the disabled writing, acting, producing, and directing community, there are so many talented people with unique perspectives that the rest of the world is missing out on.

It becomes frustrating every time someone does something incredible, and it feels like only our community takes notice of it. We have to create our own projects. We have very few people in our community who have enough power to make social or political change. We have to be very loud, and there are still a lot of people who aren’t listening. So it’s bittersweet, finding that community.

ALLIÉ: How has identifying as a disabled actor changed the way you see yourself and your place in this industry?
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CAREY: Yeah, it's interesting, and it's changed a lot. I'm somebody who—I question everything. I'm kind of an overthinker, to a fault, I think.

At the beginning, there was this desire to not change too much before I started identifying as a disabled actor and seeking out those spaces and looking for the people who were looking for me. Before I even knew that those people were out there, I was doing a lot of hiding or trying to hide my disability, trying to pass, because there was this resistance and this fear of what I would lose. I’d been very fortunate in my theater career up until then. When I was in grad school, I was working at a professional theater linked to the PlayMakers Repertory Company, and I got to play so many different roles—I got to do Chekhov and Shakespeare, but then also do Theresa Rebeck, and got to play loud characters and quiet characters and villains and heroes and romantic partners. I got to do physical theater, and I was afraid of what I'd be losing in that, to have to be open about my disability.

The fact is, I did lose a lot of variety in how I was seen and how I could be cast. But it was a relief to be seen, and it was a relief to feel like, “Oh, there are people looking at me, and I don't have to hide this anymore.” I can be my true self, and I can tell this part of my story. But after a while, it does kind of hurt your feelings, almost, to be pigeonholed and defined by that. We find there are so many stereotypes—especially if disabled people aren't given the opportunity to write their own stories—then you see a lot of the same kind of story over and over again. You see a lot of the same kinds of characters being written—characters who are defined by their disability, or the story is always some inspirational thing.

What I would start to find is, I would get an audition where it was maybe for a non-disabled character. My agents are so wonderful about trying to push any role, not just roles that are written as disabled, but I would find myself going, “I'm not going to get this part because the person in this scene has to yell at me.” There would be little things where I just know—they're not going to cast a girl who uses a cane or a wheelchair in this role because they're not going to want the main character to yell at them. Because what is that going to look like?

You're just so aware of the way that you are perceived. Over the 10 years or so that I've been exploring this identity, I'm coming to this place of really being able to appreciate when I can play a part that's a full person. The disability stories are still really important to be told, because there's such a lack of education about it. But it's wonderful when we can be disabled people and also be full characters—and disabled can be flawed and complex.

That's one of the wonderful things about Rose. And especially right now, what's been interesting to see—again, it's so hard to talk without spoilers—but I can just say there's been a flip. It's been interesting to see a flip in how people have perceived her, and I don't think that flip would have been possible if people weren't seeing her as a person first and a character first, and a person with a disability second.

Even though I love disabled-first language—again, I go back and forth. It's very complicated. You want to be able to lead with your disability, but then also lead with your personhood. I tend to fluctuate on what feels most important. I go back and forth and back and forth, and I overthink about everything. But it is complicated.

ALLIÉ: As an actor, you star in major productions like The Handmaid’s Tale to independent films such as Where Did The Adults Go. But to bring so many different stories to life you wear many different hats. In the short film, Adoptive, by you and your husband, Joseph Kibler, you both serve as the writers, directors and producers. If you would, for those who have not yet had the pleasure of seeing Adoptive, please share the story behind this brilliant short story.

CAREY: Oh, thank you. Well, it started out as a concept for a pilot that we wanted to pitch as a full TV show. And then, when the Easterseals Disability Film Challenge revealed that their genre for filming last year was buddy comedy, we thought that was perfect for us—because our lives kind of look like a buddy comedy, the way that Joe and I get through the world. And then we felt like it was a good opportunity to explore what we wanted to talk about in our pilot through a short, kind of condensed thing.

And so, it's a story of a disabled couple who want to adopt. They are indulging in some THC treats, because it's fun for them—they're just regular people. And they also use it for some pain relief, and they're having a good time. Then they realize that they’ve mixed up the days of when they're having their adoption home visit, and it's too late to turn back in their THC journey. What it does is stoke their paranoia that's been under the surface—about how they'll be perceived as disabled parents.

So, it's kind of this silly comedy of them trying to hide the things in their apartment that reveal them to be disabled people, and at the same time trying to compensate for their disabilities. Like there's a moment when I take my master's degree and stick it in the hallway so it's the first thing the person sees when they walk in. We were just trying to talk a little bit about that—and about how we knew we would feel when we went on the parenting journey, which then for us started not too long after that, in having our own biological baby.

CAREY: This idea of, I can do it, I can do it—but I also shouldn’t have to. I shouldn’t have to hide it. But I think I’m going to in this moment because I know I might be judged for it. And then there’s a nice reveal at the end, where they realize that they didn’t have to worry that much. We wanted to explore that feeling of relief that we do feel when we are in what we sometimes call “crip spaces,” you know—when we know that we don’t have to hide or explain things away.

We were inspired by that because we were doing some research into adoption for our pilot idea. We knew that we wanted to start a family, and we knew that we wanted to begin the journey the—quote, unquote—“traditional way.” In just looking at what all the options would be, we found how complicated adoption is. And in our media, it’s so often depicted as this kind of wonderful thing—which it often is—but there are so many other sides to it. And there are a lot of people who, on all sides of the journey, carry some trauma from it.

And in terms of adoption as an industry—it’s an unregulated industry in this country. And the way that it intersects with disability is really interesting, because a lot of children who end up in the adoption process or in the foster system have disabilities. And then a lot of parents who want to adopt might have disabilities. I mean, there are a lot of disabled people who just want to adopt—because disabled people are people like anybody else. But then also, people who might be on an infertility journey might come to adoption not as an alternative, but as a different and wonderful, valid, separate path—and then find that they’re so discriminated against. It’s very difficult to be approved for adoption as a disabled person. And a lot of disabled people wait years and years and years.

We read one story of a disabled couple who went through the process for about eight years, and then finally, about a month after they were approved, the father passed away. So it took them so long to get approved that there were medical complications that happened. And it was just a really sad story about how long they had to wait and what they missed out on then because of that. So we want to explore that in our pilot.

Luckily, after creating our short film, we received a grant from the Easterseals Disability Film Challenge to now create a pilot/web series based on our original pilot. So we’ll be doing that later this year. We’re going to be directing and producing and writing and acting in it, and then trying to get a lot of our community involved—both in front of and behind the camera—to really explore, in so much more depth, this issue. But at the same time, we’ll be looking at it through a comedic lens, because we find that it’s fun for us. We love comedy, but also, people can learn in a way that almost doesn’t feel like learning—or being preached to—or uncomfortable. Comedy is such a great tool in that way. So we’re so excited.

ALLIÉ: Becoming a mother is a story in and of itself. How has your perspective changed since Milo was born? What’s something unexpected you’ve learned about yourself in this new role?

CAREY: Oh my gosh, there’s so, so much to it. It’s like, where do I even begin? My day job for years now—I’ve done waiting tables and all sorts of other day jobs—but since I moved to New York, it was nannying. I worked for a babysitting company where people could request you, and you could go for just a couple of days and babysit. It was very flexible, and so it meant I got to babysit like 60 different families all across Manhattan and Brooklyn for years.

I love children. I’ve always felt very protective of children and got to meet so many and learn so much. So going into pregnancy, I felt like I was going to have a step up, right? I’m going to know some things. I’m going to be a bit prepared. But then there are so many things that you’re not prepared for.

The main thing I wasn’t prepared for was the level of how much you love your baby. I mean—and this is not universal, I’m not going to speak for everybody—but my experience was, I felt this indescribable love for him immediately that went beyond anything I’ve felt before. I mean, the closest is my love for my mom, my love for my husband. It was—I talk about craving my baby or feeling like he is a piece of my body. And when time has gone by without being around him, I feel like something is missing. I feel very grateful that that clicked for me like that because it can be helpful in some ways.

But then it also created this intense anxiety that goes... I mean, I lost sleep because I would just be watching him at night. I would worry about every little thing. So when I felt like, with other people’s children, “Oh, I know what I’m doing, this is normal, I’ve seen this with other babies.” Suddenly when it’s my kid, nothing feels normal. I’m Googling everything—you know, which I’m not supposed to do. We’ve reached out to the pediatrician about so many little things that just end up being normal. And that’s been a challenge. But at the same time, I’m also talking with a prenatal expert therapist about this, which I’m so lucky to be able to do. She’s described it as the anxiety being “heart-opening”, because it’s created in me this sense of responsibility, and this sense of fierce protectiveness that now doesn’t just apply to him.

So, I find that when I read about things in the news about babies in parts of the world not being allowed baby food because the trucks are being held off—humanitarian aid being held from babies—or when I hear about children in parts of the world being made to do physical labor to build our smartphones… All of these things that I have cared about on an intellectual level before, now I suddenly care about on a visceral level. Where it almost feels like—yes, I know I’m just one person, and I can’t do that much, I don’t have that much power—but there’s this instinctive feeling like, “But I’m the grown-up now. I should be able to do something. It’s my role now to protect these vulnerable creatures.”

So it’s been very, very interesting—the level, the depth of care that I didn’t know I was capable of. Because I thought I cared before, but now it’s on a whole different level. And I hope there’s something I can do with it that’s productive.

I know that it helps me be a better mom. But I also hope it can make me a better person, when we’re able to reenter the world more and we’re not so much in our little bubbles. It’s been this hard thing, but also a gift at the same time. That’s what’s surprised me.

And also just—confidence. I feel so much more confident as a person. I don’t waver as much in what my opinions are or what I know that I need to do.

ALLIÉ: It's a very grounding experience, isn't it? And I hear you a hundred percent when you're speaking about these babies and kids in these other places where you are not and that are not yours. When you become a mother and you look at the world through a slightly different—no not ‘slightly’ different, but very different—lens, you look at these children and you can see your own child in them. So I feel you in that level of anxiety where it's just a different connection that is not only to your own child, but to the world.

CAREY: Definitely. It's beautiful to feel that there are new levels to that, and I hope that it just continues to get deeper. But at the same time, it's painful and very sad. You wish that you could do more. It's also pointed out further to me about how we really need the collective to be able to make change. I mean, we hear, especially in our country, so many stories of one person making a difference, but we really need every person with a parent heart and anybody with a beating heart to come together to make change.

ALLIÉ: With having kids comes having books for kids. In a post of yours, one book you have that you asked your husband, Joseph, to read Milo had you both in tears (and me) as he read to your son. It was titled ‘The Wonderful Things You Will Be’. When you think about yourself and the wonderful things you are and will be (as a mother, a wife, an actress, a playwright, a visual artist and an advocate), what wonderful thing do you hope people will remember about you and your legacy?

CAREY: Oh, gosh, that’s—so, it’s not up to me, you know? That’s what’s so, so interesting. People will take what they take. I just hope that people would be able to see that I tried. And I want to feel like I tried.

Joseph and I both—he was born with HIV, and he lost his twin brother when they were infants to HIV. And I lost both of my siblings—my brother when we were teenagers to cancer, and then my sister years later to an accident that I kind of can’t talk about so much. But we both—and then having a diagnosis—I was in the hospital when I was a teenager with a collapsed lung, and that was related to my disability. My time in the hospital went on and on and on. And so we carry with us this sense of mortality. We’ve always kind of carried that, even as young people, this sense that life is short.

We have this drive to make the most of every day, and to accomplish and to connect to people. And we feel—we guilt ourselves over some things. But we also need to learn how to slow down and be in the moment and appreciate the slow and the quiet times, because those are so important. And that’s what life is really about—for yourself and your own experience of life. And Milo, our baby, is really helping us to remember that—and that it’s okay to slow down. 

For myself, I want to find that balance of being able to get the most out of my own small existence here for myself, which means slowing down and taking things one step at a time. But then I also want to leave an impact where I’ve created as much as I can, connected as much as I can, and tried to help people as much as I can. And I will always be falling short of that. Like, in the middle of the night, when I’m feeding Milo, I’m trying to catch up. I’ve been trying for years now—and not making a lot of progress—to learn Spanish and to learn ASL, so that I can connect to more people and be more valuable in different spaces. It’s a goal, and it’s a journey. I might never get there, but I’m trying.

So, if anybody were to be able to recognize that we’re trying, I guess that would be it. We’re very good at saying, I think, that we don’t have it figured out—what we’re supposed to be doing with this life. At least we stay open. And we try to stay open and humble and flexible to what that means, and what the right way to live is. ∎

Find & follow Carey on Instagram:
@careyleighcox