Five women with different disabilities ranging from 20 to 39 years old shared their insights on sexuality. From Disautonomia to spinal cord injury to Postural Orthostatic Tachycardia Syndrome to Ehlers-Danlos syndrome to Multiple Sclerosis, these women have lots to share about the impacts of disability on their self image, their relationships and their sex lives.
How has your disability affected your relationship with your body, for better or for worse?
From surgical scars to weight issues, one woman shares, “it also makes me appreciate all the things my body can still do. I feel like I’m very aware of how fragile the body is. It’s really the only one you’ve got.” Others have more of a love/hate relationship with their body. “I am frustrated and angry at my body,” one explains. “I am unable to do a lot of everyday things because of my pain, which I have a tendency to blame on my body. I seem to see my body and my mind as separate entities.” The frustration isn’t limited to one woman. “I feel like it fails me sometimes,” another woman explains. “In my head, I can still do the things I used to ‘pre-MS’ but my body just goes, nah, we’re not doing that!”
How, if at all, does your disability affect your sex drive?
Some are affected by direct and indirect elements of their disability and others not so much. “Sometimes I have good weeks where I’m all about it — but the majority of the time I have to really focus to get in the mood,” one woman shares. “And it’s definitely got nothing to do with the efforts of my partner.” Others struggle with chronic pain and fatigue, Another woman has always had a reasonably high sex drive and hasn’t found that her paralysis does anything to dampen her mood. “Sex can also be a great stress and pain relief,” she shares. One woman shares that despite some problems related to her disability, “I really try not to let it get in the way of anything I want to do. Especially sex,” she explains.
How, if at all, has your disability affected the way you have sex?
When it comes to the actual act, many of these women are ready to make the necessary accommodations. Sometimes they need their partner do more, some have needed to take time and get creative to understand their bodies and others modify actual positions.
“Usually I’m the first disabled woman a man has slept with so I have to make sure they’re at ease with it all. Though it is incredibly sexy when a man takes control and doesn’t treat me like a crystal vase that will break.”
Another woman shares, “I have to be mindful of and respect my physical limitations so that I don’t overdo it and pass out.” Others require the person to understand the issues surrounding their disability. “Having sex would have to be done very carefully with a considerate partner,” she shares.
Has your disability impacted the way other people respond to you as a sexual person at all?
Some of the women have less visible disabilities, while others deal with the perceptions and judgments of others. “I’ve only had positive sexual experiences, but I’m pretty choosy about who I get naked with,” one explains. “Any doubt in my mind and I move on.”
“I’ve had lengthy conversations with men who are shocked that disabled people have the same sexual desires as them and have sex lives too.”
She’s even had a guy confessed he liked her but who backed away because he wasn’t sure about how or if she could have a sexual relationship. One woman had trouble getting good information from her doctors and another has been seriously friend-zoned, all from people who see them as non-sexual beings. “I think there is also an assumption that if you date someone with a disability, you will become their carer,” one explains. “In reality, I have carers and whilst a partner may do some aspects of care, I would want to maintain a high level of independence.”
Has having a disability impacted your dating life at all?
Some women have been in long term relationships and have avoided dating all together, some have built up defense mechanisms and dealt with challenges related to their disabilities. “It adds a whole new level of commitment and there will always be something bubbling underneath wondering whether or not this is all ‘fair’ to your partner,” one shares. Another one who has admitted to her defensiveness shares, “I think I have this fear that they’ll suddenly panic about my disability and leave me, so I tend to act a little too indifferent.”
“It’s not my partner(s)’ responsibility to completely understand my disability or to feel responsible for my health, but there has to be an additional trust and communication when it comes to sex…If you can’t handle having conversations about my body, then you don’t deserve to experience it.”
One woman was with a long term partner when she was diagnosed with MS. “When we separated, one of the things he said to me was, ‘If you end up in a wheelchair, I’m not sure I’d be able to cope,'” she explains. “What he said was more hurtful than sleeping with another woman.” It sent her on a journey of loving herself again and braving the dating scene. “I’m now with a wonderful guy who has his own disabilities, so there’s a mutual understanding of each other’s needs,” she shares.
What are the biggest misconceptions you’ve encountered when it comes to women with disabilities and sex?
For those with a visible disability, some women have been told that “we don’t have desires, that we don’t get aroused, that we’re not sexual beings…that if you can’t move your body, you mustn’t be able to feel touch either (incorrect, motor and sensor nerves are totally different), that all disabilities are the same, and that we must be desperate so will lower our standards.” Other women were looped into the same assumptions based on their perceived inability or lack of interest in sex. “It’s often hard for non-disabled people to think beyond our (boring) ideas of heteronormative sex or ‘see beyond the disability’,” one woman explains.
Do you feel like your disability has impacted your sexuality or relationships in a positive way?
Most women have found that their disabilities are phenomenal filters.
“Most shallow, image-obsessed, pretentious jerks are going to avoid a disabled woman …which saves me [the time of] weeding them out. My sexual encounters…have tended to be with open-minded, forward-thinking men.”
In addition to filtering, it’s also added depth to communication and connection in relationships. “We have to work through these things, so when unrelated trouble comes up, we’re probably more equipped than the average couple to face it,” one woman explains. One woman has even seen benefits in herself and her self-image. “This necessary self-awareness because of my disability gives me some sexy confidence to explore with others,” she explains. “It challenges my ideas of vulnerability and ultimately leads to having a lot of fun.”
Some powerful final words on being a woman with a disability?
“It’s no different from being a woman without a disability…We just look a little different and have to be a little bit bolder to get people to forget about the disability.”
“Everyone is different, so don’t make assumptions. One person may have a really active sex life; another person may struggle. And don’t limit what you call ‘sex’…Be creative and adventurous!”
“You are still you and you can do anything you want to, as long as you put your mind to it.”
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