As conversations regarding inclusion and diversity continue to escalate, there is one group that seems to be habitually left out of the conversation: those living with a disability. Few films, television shows or brand campaigns today showcase members of the disabled community. Moreover, sex for those living with a disability remains totally tabooed. As young actress Coco de Bruycker says, “No one really links disability to beauty, sexual attraction or eroticism.”
In an effort to shed light on the sex lives of the disabled, we spoke to a group of female-identifying individuals about their personal experiences and what they wish society would recognize. This is part two in a two part series.
As told to Sara Radin.
I was born in Trinidad, grew up in Canada and I now live in NYC. I'm 28 years. I'm a full-time model and media personality.
My scoliosis affects me everyday. I wish people could understand that constant pain and discomfort is always there, even when you're trying to be intimate. And of course, every situation is different. So you're never truly prepared with how to deal with it. I’ve had scoliosis since I was 12 years old. I have two curves, one in my upper spine that is 25 degrees and one in my mid spine that is 47 degrees. I’ve never had surgery but I do regularly go for massages and treatments by a chiropractor.
When it comes to looking for a partner, I value someone who is understanding and sensitive. Modeling is an intense career so I need someone that can go with the flow and be flexible with that.
Navigating sex with my condition hasn't been horrible - it's mostly constant pain and discomfort. I’m basically always having back pain. Anything can aggravate it - standing too long, sitting too long, the list goes on. Sometimes it can be hard if the person I’m with doesn't truly understand that scoliosis is a real condition that warrants attention and has the ability to affect my intimate life. That can be really frustrating.
Since scoliosis affects my whole back (and my condition is pretty bad) sometimes after sex can be painful, or actually...even during! But it is what it is - I just stretch a lot. I workout a lot, I always do yoga, boxing, pilates, running.. Basically anything to make sure my muscles don’t get stiff and start to hurt more. If I need to stop during sex because I'm in excruciating pain, I need someone who will respect that. This is the way I am. I didn't choose this, but this is how it is and they need to be sensitive to that or, maybe I can't have them in my life.
I’m a 25 year-old Dutch model and autism advocate, who lives in Brooklyn, New York. I was born with Asperger’s Syndrome – which is nowadays qualified as high functioning autism, but wasn’t diagnosed until I was 19 years old. It’s a disorder in which the brain processes information differently, which makes it difficult for me to engage in social interaction, communicate with others (and myself) and it results in stereotypical behavior (like stimming) or interests. Because of my high intellect, I learned to camouflage my disabilities by practicing, which is typical for people with Asperger’s, and one of the reasons I got diagnosed late.
Living with an invisible disability can be difficult when it comes to dating and sex, as I have experienced myself and heard from other (young) women on the spectrum. As I conformed myself from a young age, it was hard for me to set boundaries and realize what I wanted, and what I didn’t want.. I became a victim of sexual abuse by my peers while I was struggling with my identity, looking for acceptance. I kept getting myself into situations I didn’t expect and didn’t want to be in.
Luckily I ended up meeting my current partner (at 13 y/o) who quite literally taught me to be myself, and that sex wasn’t something that needed to be rushed or forced. So slowly I was able to learn about true consent, love and pleasure. Therapy was also a big part of overcoming my trauma with sex, it helped me separate my past experience with my present one and took away some of the emotional charge.
Part from the emotional issues I dealt with while navigating sex, sex itself isn’t psychically different. However, clear verbal communication and trust is key for someone who doesn’t easily pick up on body language/hints/sarcasm. Some people tend to just go with sexual chemistry and body language, which can be hard for me/others to understand as I can send the wrong signals or interpreted others in the wrong way. You want to be sure everything you do is with mutual consent, and it’s fun for both!
I’ve never been in any other serious relationship than my current one, as we met at such a young age. So, I would say that my partner should make me feel like I can be myself after a long day of overstimulation, he should challenge but respect me (and my boundaries) and love me unconditionally. Based on these things my husband is definitely the jackpot ;).
I would love to see people take invisible disabilities like autism seriously, especially as I’ve seen a lot of women on the spectrum suffering. This is one of the things I try to highlight in my advocacy for autism awareness, as women and girls don’t get diagnosed as easily and as young as boys/men do. Unfortunately, when going through puberty, we can be an easy target regarding sexual abuse and I wish we’d learn more about our disability earlier on so that it be a strength instead of a vulnerability.
I'm a Czechoslovak American journalist and blogger living in Boston. I'm currently working as PRI The World's Digital Editor but blog as a chronic illness and disabilities haver/advocate. Journalism is absolutely not a low-stress field so I've really had to learn how to balance the daily grind with regularly checking in with how I feel. I'm not always good at it but I'm learning a lot about my own boundaries.
I have an array of health issues and am actually going to Mayo Clinic in July in hopes of finding some more answers. Currently, I'm diagnosed with Crohn's Disease, severe chronic migraine, psoriasis, fibromyalgia, arthritis as well as chronic pain and fatigue. Unfortunately these all impact everything I do. My energy levels are just completely destroyed most of the time and I'm pretty much in a constant state of full body pain — whether it be from the migraines, Crohn's or something else. For example my hands are often in so much pain that I can't hold my partner's hand. Crohns' Disease is obviously one illness that impacts intimacy. I joke and call it a pooping disease but it's far far more than needing to run to the bathroom. Personally, I deal with excruciating abdominal pain, weight loss, joint swelling, vision and skin issues, etc.
All of this impacts my relationship with my body. And obviously my own relationship with my body impacts my sex life. So it's been a journey and always will be. My hope is to continue to heal my relationship with my own body so that I'm fully able to indulge in a great and healthy sex life.
There are two things I wish people would know about living with a disability/chronic illness.
First off, it absolutely impacts your sex life. I think people so infrequently talk about disabilities and chronic illness that fully-abled people may not even realize how a disability or illness can impact the way you feel about your body, and in turn, the way you feel about or experience sex.
Second, I would love for people to consider that many who live with a disability or chronic illness may have an invisible illness — or an illness that you can't see from the outside. If we walk around while keeping this in the back of our heads, I think we'd all be a lot more understanding of each other and we'd invest more in communicating with one another. Living with a disability or chronic illness provides you with a lot of mental and physical challenges that directly impact your sex life and relationships — whether or not you can see those challenges from the outside. It's so important to talk about these experiences with your partner so that they can not only cater to your pleasure, but perhaps avoid circumstances that might otherwise make you uncomfortable. Maybe sometimes your illness or disability messes with your confidence. Maybe you're not even feeling well enough to have sex. Maybe there's a part of your body you would prefer not to have touched or a position that causes you pain. These are all things we should communicate to our partners. And who knows, maybe a new partner also has an invisible illness.
Honestly, I was really quiet about my illnesses in the past. At the time, I was ashamed and saw it as a point of vulnerability. And at the beginning of a relationship that can be really intimidating! But hiding my own experiences and struggles often resulted in a wall forming between my partners and I. I didn't have much of a choice in telling my now fiancé about my illness — he was standing next to me when I was diagnosed only a month into us dating! That initial jump quickly threw us into a very communicative relationship and I am so thankful for that.
I am happily engaged to my partner who really gave me hope in forming relationships with an illness. The number one thing a good partner can do is communicate. Whether it's simply listening to whatever ailments your partner is struggling with or what things your partner has discovered they like or don't like as a result of their illness, it's important to talk. Talking about sex can only bring honesty and genuinely satisfactory experiences.
The only way we can break the stigma of living with disabilities or chronic illness is if we share our own experiences, and truly listen and empathize with others.