The first time I peed on a guy during sex, I freaked out. Red was the color that instantly filled my cheeks as the feeling of absolute embarrassment consumed me.
“Now he isn’t going to like me anymore,” I lamented. “Even though he may still call me sexy, how could he actually believe that after my bladder involuntarily released on him?”
Tears stung my eyes as he showered. I gathered the stained, wet sheets and reviewed how I could prevent a slipup like this from happening in the future — that is, if I ever allowed myself to be intimate again.
Why hadn’t I just catheterized first? Living with a paralyzed body means living with a bladder that may — and often does — release involuntarily. Most people would agree that having an empty bladder is better than a full one when a lustful moment is taking place — a barrier to sexual intimacy that women with paralysis sometimes experience.
Since becoming paralyzed at age 12, I have had to develop a painful awareness of how my body works; not just in caring for the parts of me that no longer function, but also how my body navigates womanhood and sexual curiosity.
When I was younger, it was comforting to know that I would be using tampons and pads just like my friends — and that I could someday have sex. But unlike my friends, my sexual education didn’t take place at school or in kids’ basements. It transpired in a hospital room, with a rubber vagina, a mirror, a catheter and a hilarious, compassionate nurse. There, I was learning about the admittedly unsexy topic of proper sterile catheterization techniques, which not only forced me to be independent, but was also the beginning of having pride in my appearance, a lesson I occasionally have to revisit.
The Americans with Disabilities Act is celebrating its 25 th anniversary for achieving equal opportunity, financial autonomy and independent living for people with disabilities. I commend those who fought so hard to change legislation for the next generation. However, we still have a long way to go when it comes to protecting the sexual and reproductive health care needs of women with disabilities. Unless things change, I can honestly see myself chaining my wheelchair to the sides of exam tables that should be accessible to people like me. For now, I’ll describe what’s lacking in the health care world for women with disabilities, and how our lives are impacted.
We live in a society where what is sexy, beautiful and worthy is defined, designed and sold in stores based on a stereotypical prototype. As a young woman who is paralyzed, navigating this maze has been challenging. Most people make the assumption that since I’m in a wheelchair, I probably don’t have any sensation “down there,” and that the mechanics of the bedroom are far too difficult for me to be sexual, let alone ever dream of having a family.
When society tosses you aside from the “normal” or “perfect” image, self-acceptance is blocked by depression and ceaseless thoughts doubting that you matter or could ever be loved. Every woman should have the right and opportunity to understand how and why her body works. Especially when voluntary movement is nonexistent in the lower half of her body, and creativity is required to be intimate.
According to the Centers for Disease Control and Prevention, approximately 27 million women are living with some form of disability. For this population, it’s incredibly challenging to develop self-awareness and get good sexual and reproductive care.
Factors that hamper women with disabilities from seeking the care they need and deserve can include:
— Limited to no adapted medical equipment within exam rooms
— Lack of knowledge by some health care providers on how to manage the sexual and reproductive health of women like me
I’ve lived in a few cities across the U.S., giving me the unique ability to conduct informal surveys of different OB-GYN practices and how they deliver care. The most eye-opening experience I’ve had with a provider began when her staff was surprised I was sexually active. I was 26. The adventure continued when they had to lift me up and place me on the exam table, where I was met with the doctor’s complete lack of basic medical knowledge on female paralysis. As I was getting situated, my leg vibrated in a five-second spasm — a completely normal reaction for me when I move around.
Her response was to pat me on the head and tell me not to be nervous. I expect being told not to be nervous from the guy I’m kissing on the couch, not from a board certified medical professional who should know the difference. I remember feeling patronized; being so disappointed and saddened in that moment that I felt I couldn’t ask her anything else about my sexual health. Not only did I feel embarrassed by the entire experience — I also felt that if my sexual and reproductive health doesn’t matter to her, then why should I care about it?
Maybe I can’t get pregnant if I mess up on my birth control, since my body is so screwed up neurologically that my reproductive system is too.
Don’t even bother asking about the best way for you to orgasm; the doctor thinks your spasms are nervousness.
I never did ask my questions.
In a reproductive health policy class I elected to take as part of my master’s of public health last year, I researched the issues women with disabilities face and wrote a paper on my findings. What I discovered was disturbing and not surprising given my own personal experience.
There is often a disconnect between women with disabilities who want to control their reproductive health — whether it’s practicing healthy sexual behaviors, getting routine pap smears or discussing pregnancy plans — and provider knowledge and interest. This can make it challenging for us to value, safeguard and explore our sexual health when confronted by sometimes judgmental providers who outright deem us asexual, and may not stress the importance of preventive screenings.
While instruction on caring for women with disabilities — whether mental or physical — is woven into the fabric of OB-GYN residency programs nationwide to varying degrees, knowledge and comfort level in treating this population differs widely from provider to provider. That’s why women should speak up and be unafraid to tell providers they aren’t being addressed in a way they feel comfortable with, says Dr. Sandra Carson, vice president for education with the American Congress of Obstetricians and Gynecologists. On the flip side, she encourages providers with limited experience caring for women with disabilities to prepare for appointments, including by reviewing relevant materials on ACOG’s website.
One of my greatest fears is that women and young girls with disabilities will find the feeling of isolation addictive, leading them to view their bodies as worthless and therefor not worthy of receiving high-quality health care.
I fear they will feel like freak shows for having sexual desires, when society and medical professionals may largely view them as asexual.
All I know is that it’s going to take more awareness, education, discussion and legislation to break this stigma and improve the quality of care for women with disabilities.
If Wheelchair Barbie must grace the cover of Playboy to force a marketable discussion that screams “We matter!” then so be it. For now, I hope she has a better experience at the OB-GYN than I have.
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‘Wheelchair Barbie’ Goes to the Gynecologist originally appeared on usnews.com
