I fell in love with romance at a young age thanks to shows like “Sailor Moon,” “Avatar: The Last Airbender,” and “Lizzie McGuire.” I loved the concept of love and as I became a teenager and I read a lot of young adult romance books that talked about a similarly related topic that I became particularly curious about: sex. My close relationship with my mother facilitated my interest and gave me access to the laundry list of questions that I had. But, even with all of the knowledge I received from her, sex always seemed like something that would never happen for me because of my disability.
CREDIT: Andrea Lausell/Instagram
It didn’t take long for me to understand how my disability made me different from my peers growing up. Still, it wasn’t until I went to high school that I came to understand a new way in which I stood out from them. At the time, most of my friends were already exploring their sexuality with their boyfriends. Meanwhile, I was still struggling to actually get a boyfriend. The books I read and the shows that I watched at that time told me that, for most, getting laid was pretty easy. According to them, the pursuit was also rather straightforward. You meet someone, there’s chemistry, you get to kissing, and ultimately the kissing led to sex. I knew that I could do all of that. What I didn’t know— what TV, movies, and book characters never seemed to address— was how to comfortably initiate sex as a disabled person. None of the media formats that I’d consumed had ever told me how to sit down with someone I wanted to have sex with and tell them that when it came time to get naked, they would see me, scarred disabled body and all.
So, for a while, I delayed having sex.
I dated a few guys in high school and in college but nothing really seemed worth my time. Instead of dating, I focused my attention on graduating and figuring out who I was, what I wanted for myself and what I wanted in a partner. When I finally finished my bachelor’s I moved straight to Los Angeles to continue my career in acting and activism.
Soon after I arrived, I met a sweet-voiced, kindhearted guy named Coqui*. It didn’t take long for him to become the romantic interest in my very own little love/ first-time story.
I always tell people I lucked out when it came to dating Coqui. Of course, he had his faults, he was stubborn, hard to read at times, and struggled to express his emotions but in the end, he put a lot of effort into our relationship and did his best to understand me and my disability. When things started out, I felt completely comfortable with him at all times. Then, we had our first kiss. When it happened, I remember immediately being sent through a mind tunnel, one where the lessons from books and shows careened through my thoughts and reminded me of what kissing led to. I remember thinking that if kissing really was the slippery slope that I believed it to be at the time, I was not at all ready for it. After all, our relationship was new, he didn’t know much about my disability and I was scared to tell him about it. So, naturally, I refused to let him kiss me again.
CREDIT: Andrea Lausell/Instagram
As the months went by, however, I got comfortable with kissing Coqui again. It didn’t take long for us to fall into heavy makeout sessions (my inner teenager who lived for this kind of stuff was on Cloud Nine), but when we’d get close to having sex, I would stop it. Fortunately, Coqui was patient with me and assured me that he was okay with waiting until I felt ready. Still, it took time for me to get there because I was scared for my own body. I didn’t know if having sex would trigger the symptoms that came with my disability and if it did, whether or not it would make my back hurt. I also wasn’t ready to explain to Coqui that the reason why I feared pain was because I had Spina Bifida.
Spina Bifida is a birth defect in the spinal cord. It caused my own to develop improperly in the womb and has affected me my entire life. Years of surgeries, chronic pain, and some other complications have left my back laced with scars. It’s also caused complications with my bladder which requires me to wear control pads 24/7. I grew up with a lot of insecurities over this and, as you might be able to imagine, the absence of similarly disabled characters in movies, ads, and television didn’t help to quell such feelings. In our culture and media, we’re bombarded with images of hypersexualized women, all of whom have perfect skin and whose backs are smooth and without scars. They’re certainly not disabled or in need of bladder control pads. When issues and concerns with bladder are brought up in media, the topic is typically reserved for ads targeting the elderly and pregnant people. So as a twenty-three-year-old non-pregnant woman who knew her partner had been surrounded by those same images growing up, I felt nervous about revealing my body to him. I feared that once I did, he’d instantly find me unattractive and leave.
CREDIT: Andrea Lausell/ Instagram
As time went on, and we got to know each other better, I started feeling ready for sex. I started to open up to Coqui about my back and the fears I had about pain during sex and together we talked through it and I learned his concerns as well. Eventually, we were able to get to a place where our fears no longer took over and we could just enjoy each other. I soon reached a turning point in our relationship where I realized that I needed to cross one last hurdle of particulars before having sex with him. I needed to tell him about my pads.
I finally decided to take the leap on a night that was pretty typical for us. He was searching for a movie for that we could watch and I was attempting to wait patiently. This time while simultaneously having an internal panic attack. Coqui noticed that I was acting strange and when he asked what was wrong I immediately burst into tears. When he took hold of my hands and assured me in the most gentle voice I’ve ever heard, that it was okay to talk to him, I cried more. I was so sure that the moment I told him about the pads, he’d find me disgusting and kick me out of his house, but through the tears, I found the courage to tell him. “I really want to have sex with you,” I told him. “But I don’t want you to be grossed out when you undress me because you’ll see my pads”. (Who knows if he understood whatever else I told him because I was in severe cry talking mode.)
And then, Coqui surprised me. He chuckled. Apparently, he already knew about my pads. He’d seen the scars and knew about practically everything I endured with my disability. “You have a video all about it on your channel,” he said matter-of-factly. “I was just waiting for you to feel ready to tell me”.
CREDIT: Andrea Lausell/Instagram
At that moment, I felt a wave of the kick-yourself-style shock and embarrassment one tends to get when they realize that they’ve forgotten a pretty big detail. A couple of years before I’d started a Youtube blog where I made, and still make, videos with the intention of helping the disabled community. I started it hoping to help people in the Spina Bifida community to navigate the world and to help give them tips on what products I used to aid my disability. By the time I met Coqui, I’d uploaded a trove of clips, some showing my scars others talking about my pads. (Apparently, love can make you forget even your most popping Youtube channel.)
Coqui had seen it all, and none of it had mattered. He still felt attracted to me, still wanted to be with me, and definitely wanted to have sex. It was a massive relief and eventually, we did it. It was nerve-wracking, of course, but enjoyable. There was no shame and no back pain. Just me, Coqui, and compassionate communication right from the beginning to the end.
Even though Coqui and I are no longer together, the entire experience was something I treasure to this day.
I feel so grateful that he was the person I decided to have sex for the first time with. For so long, I’d waited to be that intimate with a partner, someone who would respect my feelings, my body and myself while also seeing the strong, albeit very anxious, Disabled Latina that I am. I wanted a partner who could empathize with, someone who would ask questions and listen with an open heart and mind. I was fortunate enough to get all of that with Coqui in the time period that we dated. With him, I was able to explore sex without judgment. I was able to be with a partner who I loved with all my heart.
In a way, I got the romance I had dreamed about as a kid. Though, I’d like to think mine was a little better than most of those stories. The relationship gave me a new sense of confidence and allowed me to feel ready for new partners. Because of Coqui, I was able to better understand the type of respect I wanted from people. Sure, to this day, bringing up conversations about my pads and back remain hard for me to do. I still fear rejection, but (ahem, hair flip) I also know that I have quite a few suitors ready to date me. Like Coqui, they may love me in ways I’ve never expected, and show me moves I never knew before. All I know is that, for me, sex will always be a little more complicated thanks to my disability. Still, that doesn’t mean that I can’t have amazing sex (trust, I can). The key I’ve found is to communicate and be honest about who I am and to make sure that this hot disabled body of mine has a good time with any partner that I choose.
*Name has been changed for privacy.