Founder Laura Jane Kenny interviews Ph.D candidate Rebekah Taussig on fashion, sexuality, being a person with a disability and how they all tie together.
Laura Jane: So, let’s start with childhood. Can you tell me when you first started realizing you were in a body?
Rebekah: I lost my ability to walk when I was three so I don’t remember ever having a typical body. I do have really early memories of feeling content in my body and feeling really comfortable with the way it moved.
I didn’t get a wheelchair until I was six or seven. There is a kind of in between space where I climbed on things. I had a tricycle that I pedaled with my hands around the neighborhood. I crawled everywhere. I have really strong memories of that, of not even thinking about what I looked like.
Before I got my wheelchair, I slowly started to become aware of the fact that people would watch me. I wouldn’t say there was one event where everything changed. There was a slow dawning on me that continued to grow and grow into my adolescence. The more aware that I became, the more shame that I carried. People never teased me or made fun of me so it’s hard for me to pinpoint when I started feeling shame. I think a lot about the bodies that we are told are beautiful and what is creating that shame. I became more and more aware of the way that other people saw me. And it’s more than just being looked at, it’s a particular kind of gaze, a gaze that feels like I’m watching you and I’m feeling sorry for you.
LJ: Since high school and college are when a lot of us start thinking about our bodies in new ways, can you talk about that time for you?
R: I think high school was where the most shame grew. When I started noticing people watching me when I was a kid, it maybe felt weird. In high school, saying that I felt like a monster does not feel like too strong of a word. I think about school dances and finding a dress and knowing how prom pictures are suppose to look and how I wasn’t fitting that. I think about the rituals around dating and growing into womanhood and I felt very aware of the fact that I was not blossoming into that. I had this idea that I had a body that was not desirable. That is the goal we were supposed to have at that point, to be attractive. When you’re a kid with a disability, you’re falling short in one way, but when you’re a teenage and the image that you’re presenting is supposed to be able and beautiful, it intensifies what you feel you fall short of. For me, my shame continued to increase in high school and into college. A lot of that solidified for me around the idea of dating and finding a person.
A lot of my relationship to my body was shaped through faith. I was raised in a really conservative, religious home. If you think about the setup for Evangelical faith and how the body is depicted, there is this idea that there is such a thing as the “right” body, and, because of The Fall, some of us have broken bodies that will only be made whole again once we get to heaven. Under this framework, I grew up believing that God was using me to demonstrate something, that it was my job to show how God could use a broken person. My body was a sort of metaphor in that way. I was dealing with all of this shame but there was no space for shame in that narrative. I was experiencing a lot of things, what I would now call depression, but I would go around in my life as the smiling crippled child. I was very much denying my body having a voice. If my body was tired, it was my job to push through that and not listen. It was a pretty severe detachment from my body. I was pretty much going into these super power levels of ignoring my body. Of course my body is showing signs and trying to get my attention. I pretty much successfully ignored that until I got married when it demanded that I paid attention.
It’s really interesting to think about bodies and body image. Part of it is learning to appreciate the image of my body. There is a piece of it that is allowing me to be inside of my body, to listen to my body, to respect and honor and value my body and not just be really brutal to it and discount it. That’s been a big party of my transition, what does it feel like to be inside my body, what is it like to not be separate from my body but one with it? It’s taken years of therapy to understand what it means to live inside my body instead of seeing it as something to overcome.
LJ: How is your sexuality and your body image related?
R: It’s almost impossible to talk about me being in my body without talking about sexuality. Very, very early on, one of the first messages that I received about the world is that, as a woman, the greatest goal you will ever have is relating to sexuality. The message is: you will be a bride and you will attract a man and you will have babies.
As a very little person, I wanted to be sexy and beautiful in some way that I didn’t understand. I knew that very early on and I wanted to be that very early on. The next thing I learned was that my body was not that and I would not be that. It is hard for me to explain why I wanted that. It could be from the images that I saw of all the women that were wanted and I didn’t look like that. One of my sisters is two-and-a-half years older. My parents were very concerned about her modesty. They weren’t concerned about mine.
By the time I was in middle school, I was very sure that no guy would want to have sex with me. I knew it was an important thing. A lot of that comes back to my upbringing where being a wife and a mother is what you are here to do. It was really, when I think about it now, it was almost like an obsession of mine. It was a constant desire, ‘How are you looking at me?’ and then ‘I know that you don’t want me but I wonder would you want me?’ In a lot of ways I felt like I needed to be wanted because being wanted meant having worth. I started dating a boy at my church when I was in high school. It felt like this weird miracle fluke. It was like, ‘No one else is ever going to want me so you must be the one because you have to be the one because this is never going to happen again.’
We got married when I was 22. I realized pretty quickly that being wanted in a sexual way was not as satisfying or fulfilling as I thought it would be. It ended up being kind of awful. I felt like I was seen as this object that was really desirable but I also felt like I wasn’t seen at all. It felt very lonely. I wanted to hide my body more than ever before. Essentially, I was so obsessed with that pursuit, I made massive life choices to get it. I want to say that after that relationship ended, I stopped wanting that. But it took a while. It probably took until I ended up in the relationship that I’m in now. I can’t even tell you exactly how this happened, but it feels so much more supportive and independent to be in this relationship. It’s been a jarring adjustment. At first, I almost didn’t like it. Transitioning out of needing someone to like me for my body has allowed me to find fulfillment in myself in other ways, like the joy that you get from creating something or having a meaningful dialogue about something you care about. I think that the obsession for me was very much connected to the fact that I felt like I was supposed to get my worth and meaning from my body and I could never get it. And this very long season has been spent learning that it didn’t make me feel alive or fulfilled.
LJ: How is clothing a part of your body image experience?
R: It is interesting to me how early I cared about the clothing that I wore. I grew up in a family with six kids. My parents aren’t very wealthy. I wore a lot of hand-me-downs. Pretty early on, I would say when I was in eighth grade, it was important to me that my clothing was unique. I loved thrift store shopping and wanted my clothes to be vintage and weird. In the same way that my body is really different, I felt like it was me saying, ‘I like different.’ It was like I was saying, ‘In case you were wondering, this is all on purpose.’ I am very aware of the fact that people are looking at me. Anytime I go into a new space, my body is very naturally obvious. If you’re going to be looking at me, I want to control what you see.
There is a way in which fashion is a tool, it redirects the attention. It’s both hiding things and drawing attention to things. As I got older, I became more proud of my scars. I wore dresses with scoop backs. I was hiding my disability and showing my disability in a way that is complicated to me. A lot of clothes that I pick will hide parts of me that I am more self conscious of. Even now, when I think of myself as less self conscious of my body, I will buy the dress that hides my belly. My partner will get pretty annoyed about how long I stare at myself in the mirror in the morning. I care about it a lot. My theory is that I’m so used to having people look at me, I want to assert something. I want to say that part of myself is that I’m different and that I’m doing it on purpose.
LJ: How do you participate in the identification of a person with a disability?
R: I think this is one of the hardest questions to answer. Most of my life, I really did not see myself as a person with a disability. I really saw myself as separate from that. When I started school, my parents really wanted me to try riding the bus. It was the short bus, the bus that all the kids with disabilities rode. I have a very strong memory that I didn’t belong there. I didn’t have any friends with disabilities growing up. The first time I met a woman with a similar disability, I was 21. Honestly, and this is embarrassing to say, I don’t think I really believed that I was disabled. I somehow got it into my head that I was choosing to use a wheelchair, that if I really tried hard enough, I could walk. I didn’t fully recognize the ignorance of that until I had a really weird relapse when I was 22. My paralysis increased dramatically overnight and I went to rehab for a month. Being in rehab, every day, trying to move my feet, I realized I really can’t walk.
I really did not identity as being connected to the disabled community until I was older. I was experiencing life as woman with a disability— my life experience didn’t match the people around me. I wasn’t seeing stories that matched mine. If I shared my story, it was met with kindness but not with recognition. When I was in my graduate program, I remember the very first disability studies article I read was a chapter by Lennard Davis and I was gasping aloud at every paragraph, thinking, ‘Oh my god, really?’ I couldn’t believe that there was a whole chapter in this book of experiences that I really thought were unique and singular to me.
The difference for me in being a part of the disabilities community and being alone and not identifying with the community is the difference between embodying the medical model of disability and not the social model. When I was not a part of the community, I thought I was a problem, that I would bring the problem. There was the question in the air of ‘What do we do with her?’ I would think, ‘I am the problem here, and I am so sorry and I don’t want to make anyone have to go out of their way to have to help me.’ When I connected to a community and I had to identify as one of many people, I didn’t feel like I was the problem. I was part of something and I could recognize patterns. I could see that the problem was something outside of me and not inside of me.
LJ: What has being on social media been like for you?
R: It has totally taken me off guard. I did not expect for it to be as meaningful as it has been. I can’t explain the impact of posting something totally personal and having people respond with, ‘Me too. I deal with that too.’ I often have strangers approach me and pray for my healing. It’s happened to me quite a few times in my life, every few months or so. No one around me had ever experienced that and I’m trying to process what it means to me and why it’s so devastating. I had literally never met anyone in my life who had experienced that. The people who responded to me, when I posted something about this experience, felt so meaningful on a different level that I didn’t expect.
My partner and I had been at a party and someone I didn’t know started to say how amazing it was that he was dating me. I posted about that and so many women were really grateful that I shared that, to just have another person processing it. It’s incredible to be able to say, ‘This happened and continues to happen and it really feels really bad when it does.’ I can’t even believe how meaningful it is to me, just going about my everyday life, knowing in the back of my mind that other people experience this too. It just kind of feels like we are a community together. Whatever happens I can post about it and people understand.
Also with physical impairment, we don’t leave our houses as much, It’s hard sometimes, it can be hard to go out into the world and enter a lot of different spaces. The virtual aspect of social media has been important.
I don't want to pretend that every single thing about social media is good. This virtual space invites all comments and not all of these are going to be feel positive. I don't want to speak for everyone with disabilities, but one thing that’s problematic for me is “inspiration porn.” When the word ‘inspiration’ is applied to someone with a disability, it is often a lot more complicated. People with disabilities have a long history with that word that goes back further than TIny Tim. A lot of people with disabilities would rather not be applauded for managing to smile “despite everything.” To me, the biggest problem with this inspiration label for people with disabilities is the fact that this places all of the focus on the individual and draws it away from the larger, systemic problem. We are applauded for climbing out of a system that was not made for us, when we would rather have the system itself be addressed. This practice leads to a mindset that if a person just tries hard enough, they can get out of it, as opposed to recognizing that the oppressive structure itself is the problem. You’re falling back into the narrative that makes this a solo journey, but really it’s a larger social issue. And I would rather have you think about that in the larger context than just focus on me.
LJ: What advice would you give to people who are wanting to be more body positive?
R: I always feel hesitant with advice because I feel like everyone is so different. Every body is different. One thing that seems pretty fundamental is being intentional about who you invite into your life and what voices you invite into your life and what community you build. I personally can feel my perspective shifting when I fill my Instagram with certain people. I invite more voices and images that celebrate the things that I want to celebrate. I have filled my feed with images of women that are celebrating their unique bodies. I honestly feel like I am rewiring my brain. It’s almost like my brain is recognizing cues for what is beautiful and, as community, if we can collectively think of our bodies differently, we could all rewire our brains like that.
This interview has been edited and condensed.