Anita Rao
I first got on the apps after the end of an almost eight year relationship. Online dating was fully in its adulthood by then. And I'd missed how many of my peers spent their weekends catching giant fish and taking poorly lit bathroom selfies. Despite what everyone had told me about which apps were better for what, they all had one thing in common: The photo was king.
Swiping left or right had me all up in my head about the amount of attention I was giving to how people physically presented themselves on these apps. What kind of assumptions was I making based on a couple of images? And why did this make me feel conflicted when everyone makes snap judgments about other's bodies all the time? It's because I knew that more often than not, those reactions told me much more about myself than about the people I've yet to meet. This is Embodied. I'm Anita Rao.
If you grew up like me reading bad 90s teen magazines like YM, you may remember a lot of advice about how to make him want you. And how lip gloss and a crop top were essential tools for feminine attraction. We're taught early that others are constantly reading our bodies. This is something Julie-Anne Scott Pollock also took notice of as a young kid.
Julie-Anne Scott Pollock
With spastic cerebral palsy I used to have my back hunched and my knees and my feet facing each other and up on my toes in a way that was obviously read by other people as disabled — in ways that I would get looks of pity, looks of discomfort, and in so many ways just sort of erased from that idea of ever being attractive or being cute or all the things we call little girls growing up.
Anita Rao
Julie-Anne's now a professor in communication studies and the director of performance studies at UNC Wilmington. She spends a lot of time as a researcher thinking about what it means to live in a marginalized body. And that research has roots in her own experience. When she was 11 years old, she underwent a two year operation. It affected how she looked and how people treated her.
Julie-Anne Scott Pollock
Suddenly at 13, with my back straight and my feet facing forward, even though I still had an obvious limp, people read it as a temporary injury. And so suddenly, my body — which had been in physical therapy since I was two when I was diagnosed with cerebral palsy, and had very defined muscular structure — was read as athletic and temporarily injured. And so the amount of attention that was suddenly coming at me was was a little bit overwhelming from people. I remember the first time walking into high school as a 13 year old girl. And there was a group of boys standing in the corner, nudging each other and laughing. And I thought they were making fun of my limp. And I didn't know what to do. I was new at this high school. And finally one of them came over and I was so braced for something really hurtful. And he asked me if he could show me where my class was. He could tell I was new here. And so suddenly, I became this sexual being that people would flirt with from time to time, and it was almost jarring for me.
Anita Rao
Even as Julie-Ann got older and into more serious relationships, assumptions about her sexuality and her disability continued. In one relationship, she noticed that her boyfriend's parents treated her with a seemingly unfounded hostility.
Julie-Anne Scott Pollock
One of my first boyfriends — and I would say this happened several times — his mother was really negative towards me. Her body language was just hostile. And I'm a communications person, and at first, I was thinking: Well, you know, maybe I'm overthinking this, you know. But it got to be after a couple of months, and like, she really does not like me. And so I finally asked him. I said: What is going on? And he said: Well, you know, I'm the oldest boy in the family. And she's just really upset that I seem to be getting serious with someone who can't have children naturally. And I said, and I was like: Well, who are you getting serious with? You're dating me. Like, what's going on? And he's like: Well, you know, with you having cerebral palsy. And I realized we had never had the conversation that cerebral palsy in no way shape or form impacts my fertility. I've had four children, conceived and given birth naturally. And I realized at that point that he just assumed that I was unable to get pregnant because I'm disabled, when that is in no way part of my diagnosis or challenges in life in any way. Also that idea of like, even though you're sexual and I'm sexually attracted to you, there must be part of you that's broken in this way. There's many people that do not have visible disabilities or any disability at all, that do struggle with fertility, and no one ever assumes that. [Yet] they automatically assume it with me, when that is actually not a struggle I have it all.
Anita Rao
As a petite person with a limp, Julie-Anne also wondered about dates that seemed especially attracted to her disability and to caring for her. This kind of fetishization is something D’Arcee Charington also experienced as someone with spastic diplegic cerebral palsy.
D’Arcee Charington
I was dealing with someone who actually was going overboard in his care. And he was treating me like glass. And, you know, I basically was like: You need to realize that I was disabled before I met you. I will be disabled after you leave. And, you know, like, basically if something is going wrong, like I will let you know. But if I don't ever say that to you, then just assume that this is business as usual. You know, I think that it plays into the idea that like, people want to be kind. But then you get into, you know, like the very gray area where intimacy can go overboard and turn into infantilism.
Anita Rao
D’Arcee is an advocate and a doctoral candidate in English at The Ohio State University. He's a super charismatic storyteller. And he had one particular dating experience that fell smack into this fetish category when he was living in London. He told the story at a live event in Washington DC in 2015.
D’Arcee Charington [Audio from live storytelling event]
So my introduction to David was this: Merry Christmas sexy, he typed. My response: Well, I don't know how merry it'll be because I'm by myself for Christmas, but like thanks and Merry Christmas to you, too, I guess. David should have been like: Thanks, man. End scene. But no, a mere two lines into our conversation he responds with: Well, baby, I'll be your Christmas present. Your profile says you're in London. So I'll call you from the airport on Tuesday. Um, I think I was too busy fantasizing about Beyonce and fried chicken, because if I had seen that message, those plans would have been crushed. But by the time I did see it when I went to type: Wait, what? I got: The user has now logged off. This whole interaction took place in less than four minutes. So fast forward one week. And this guy is coming up to my front door, I realized I have about four minutes worth of information on him. Is that a good enough background for a first date? Three glasses of wine I had said: Yes it is. The spirit of Christmas inside me said: You should be open to new ideas. If you ever have that thought, let me tell you why that is a horrible idea. We were in the car driving, and I had my hand on the door handle for an emergency exit. And I looked at this man who had inexplicably turned up on my doorstep. He was 40s, brown hair, green eyes. Cute, medium stalkerish type. I can handle that. So I said: David, why did you fly over here on a whim to come and see me? He said: Because I love that you cannot walk. It is so sexy to me.
Um. Um. Skrt.
David was a devotee. Let me explain. Devotees are people who sexually fantasize people with disabilities even though they don't have one. They live to serve and receive great pleasure in doing so. Understand, being gay with a disability is significantly more difficult than being plain old, regular gay. And that is the only time in history you will hear the phrase "plain old, regular gay." Because sometimes glitter isn't sparkly enough.
Anita Rao
I cannot believe all of that went down on a first date. Definitely more wild than any of my online dating experiences. But it just further supports what we've said so many times on this podcast. Communication is key to good relationships. And it's one of the most difficult parts to get right. Julie-Anne has some helpful takeaways to pass on. Because of her disability, she learned how to navigate physical and verbal communication in relationships in a very specific way, especially when it comes to sex.
Julie-Anne Scott Pollock
I have a spastic cerebral palsy, which means my body tenses on its own without me meaning to tense. So while that is a nonverbal communication of: Stop, you're making me uncomfortable. For partners who know my body, they would just assume: Oh, that's nothing to pay attention to — she has cerebral palsy, that's just happening. So even a very attentive partner who cares about me and my comfort level, I would have to physically say: I'm really uncomfortable. You need to stop. That's hurting. That's why I'm tense. Please don't do that. So I feel like I've had to learn to be very verbal when it comes to intimacy with partners.
I teach a first year students seminar, where we talk about consent in different points. And I realized that what I've learned to do, because I have an atypical body, is something that all partners would be safer if they just would do. And so that idea of not counting on people to read your signals and telling them and being assertive of what is and is not okay. So I think in that way, having an atypical body gave me that level of having to be more assertive, because I knew that people continually misread me.
Anita Rao
In our world of digital dating, there's always the decision about what to say about yourself on a profile. Like what went down with D’Arcee, how much goes said or unsaid in those first few messages can be a game changer. For folks who use wheelchairs, online dating opens up options for disclosure. Whether or not you choose to include your wheelchair in a profile picture, and how much you talk about disability in the early stages of courting can be an evolving decision.
Ariella Barker
When I was younger, I wanted to avoid the conversation altogether. I didn't want to talk about my disability.
Anita Rao
Ariella Barker is an attorney in New York and former Ms. Wheelchair North Carolina. She used to say nothing about her disability before meeting a romantic match.
Ariella Barker
I felt like that was pointing out my defect, because that's the way that others looked at it. I felt as though if my profile picture showed my wheelchair, well then that would immediately turn them off. They wouldn't want to date me. [I would question] should I include it in the profile because I didn't necessarily feel as though it defined me. But later on, as I had one horrible experience after the next —or one traumatizing experience after the next — I realized that I wanted to have that conversation as soon as possible for nothing other than to weed out potential heartbreak.
Anita Rao
Ideally, that conversation ends in understanding. But D'Arcee said ghosting is an issue even after establishing a good connection with someone.
D’Arcee Charington
People talk to me, and they're like: Oh, you're so witty and charismatic. Oh, and you look nice. And you have a nice face and a nice body. And then you mention that you are a wheelchair user. 90% of the time, people will just log off, or they just disappear. And it's frustrating, because it's not like you haven't had a great conversation for two hours beforehand.
Anita Rao
Tell me about navigating that rejection. I mean, in the online world, it's a little bit different than in real life, I'm guessing. But I mean, how do you navigate that for yourself? Because that seems so hurtful.
D’Arcee Charington
You know, as I've gotten older, that has become — it's like more of an understanding that, you know, these are people that I wouldn't want to deal with anyway. And so that's that's basically what I tell myself, it's that, you know, if you have a problem with it now, you know, I'm giving you my cards up front. If you don't want to deal with it, that's fine. You know, if anything, I just saved myself, months and months and months or possibly years of shallow heartbreak that able bodied people are going to find out at a later date, and I feel really sorry for them. And you know, that's what ableism is. It's like, you know, I was born with a disability. It's society that has the problem with disability. It's not my problem to go back and tell somebody to fix.
Anita Rao
Assumptions can lead to a lot of frustration for people with disabilities in the dating world. But this ignorance and judgment also leads to very real, very scary situations. People with disabilities are more likely to experience sexual coercion and sexual violence than those without. This is something I talked about with Ariella.
Ariella Barker
So many of us — 80% of women with disabilities are sexually assaulted in our lifetime. And it's because I think, you know, we have the intersection of gender discrimination that becomes violent, as well as you know, ableism, because we're so vulnerable. And that combination creates an incredibly dangerous situation. And after, after first experiencing it, and for me, that first experience was actually a best friend. So that made it even more impactful. And so, I systematically created a system with so many rules in place for my own dating life to protect my safety, to protect my heart, that I ultimately became in a situation where I so severely limited the amount of people that I could date or the forms of dating that I would accept, or the types of dates that I would do, or the situations that I would put myself in, that I ultimately erased all possibilities for myself. Because essentially, I ultimately had to remove every single category of man or situation out there.
Anita Rao
Ariella made rules for herself that she could only date people she already had a relationship with. People she trusted. People that already knew she had a disability. But things kept not working out. It took a breakup for her to realize it wasn't something she was doing wrong, or some rule that she had broken. It wasn't her problem. It was theirs.
Ariella Barker
The culminating event that kind of made me realize this was after dating someone who had been a very close friend of mine previously, and we had become serious. And we started talking about marriage. And then he immediately got very distant and ultimately ended things with me saying that my disability was too much, and he wasn't strong enough. I realized that it wasn't about me. And it wasn't about my decisions. And it wasn't about the situations that I was putting myself in. It was about — it was about them. It wasn't about me at all. And his statement that: I'm not strong enough. That was completely right. That completely answered everything for me, in my mind, my entire life. It wasn't that I was not physically strong enough and that disability made me defective to others. Those people were not strong enough, mentally, emotionally, whatever it was to deal with any challenge whatsoever.
Anita Rao
All the members of my immediate family are able-bodied. We've just started talking about this topic in my family, and I highly recommend it. Just remember that your current physical ability is hardly guaranteed tomorrow. Julie-Anne explains why best.
Julie-Anne Scott Pollock
Remember that every person is in a mortal body that is going to change over time. Knowing that my husband very recently started having problems with his back as we're both approaching 40 and is dealing with also having a disabled body in some ways. All of us that live long enough will know what it means to live through a disabled body. Because that's so situational. And I would realize that the older I get, the more I move through life, the more at ease with my disabled body the people are around me, because they're aging, and their bodies are breaking down too.
Anita Rao
My thanks to Kaia Findlay and Grant Holub-Moorman for producing this episode and to Charlie Shelton-Ormond for editing. Thanks also to Scott Shrake and the folks at The Story League for letting us use a piece of D’arcee’s live storytelling. This show is sponsored by Weaver Street Market – a worker and consumer-owned cooperative, selling organic and local food at four Triangle locations in North Carolina. Now featuring online shopping with next day pickup: weaverstreettmarket.coop. Embodied is a production of North Carolina Public Radio WUNC, a listener-supported station. If you want to lend your support to this podcast and WUNC's other shows on-demand, consider a contribution at wunc.org now. Incredible storytelling like you hear on Embodied is only possible because of listeners like you. Lindsay Foster-Thomas is WUNC’s director of content. Jenni Lawson is our sound engineer. And your head is bobbing right now because of Quilla, who wrote our theme music. I’m Anita Rao, on an exploration of our brains and our bodies, taking on the taboo with you.