As a disabled womxn I oftentimes used to feel left out of the conversations regarding sex, relationships, and sexual health. So earlier this year I took it upon myself to change that in a small capacity, not just for myself- but with the hope that it would serve as representation in a small way for other disabled folx.
I hope that the stories and experiences shared by the amazing individuals who have agreed to partake in part 1 of this exciting project are as inspiring and enlightening to you, as they are to me.
This is a safe space in which real people have kindly, and graciously shared these personal insights into their reality, and experiences. Therefore, these beautiful, and touching stories are to be treated with utmost care, and respect – so when visiting the pages of contributors (which shall be listed alongside their story), be supportive.
Please be aware that each submission has relevant trigger warnings attached to it.
My Life Through the Looking Glass
[TW: sexual assault]
‘Disability informs almost every part of my life. It’s as important, if not more so, than my gender and sexuality.’ – Stella Young
Sexuality is something of a passion of mine, but I have found that I cannot escape or change my disabilities. Today I am learning to embrace this dichotomy.
In high school I developed chronic pain, fatigue, and numerous medical issues. I became mostly bedridden, unable to walk without help, mentally fatigued to the point where I would simply stare at the wall for hours watching the sun’s shadow. My physical health never recovered, causing disability throughout my life.
Feeling a lack of control in my life, I hoped to take charge, to gain a sexual awakening and independence. As a child who sought to lose my innocence the line between empowerment and consent was easily blurred. After being raped I had a terrifying mental breakdown spent in the locked ward of a state hospital.
In college my first boyfriend raped me when I lay crying in his bed after sharing with him the trauma of my first sexual experience. When my now husband learned of my bruised rib and heard the emotional control I was under, he showed me how to leave. Sexual encounters still triggered flashbacks and dissociative episodes; the years that followed were filled with tears, emotional upheaval, erratic desires and through it all love and acceptance.
I began mental health treatment, which I maintained for years and still do. I finished college and become diagnosed with Ehlers-Danlos Syndrome a genetic connective tissue disorder. I had always enjoyed my sexuality and in these years, I began to heal. I learned to not fear intercourse, I sought out lovers and relationships with individuals across the spectrum.
Today things are a challenge, such as dressing myself, brushing my own teeth, or walking to the kitchen. I have realized what an incredible bond I share with my husband. With him I have found emotional peace. Without asking he brings me medication, hot packs, sits by me in the shower or on the toilet when I am ill. He rubs painkillers on my back, takes my retainer out of my mouth, and clothes and bathes my body in bed.
We share intimate moments I never thought I would experience as an adult. To have my lover be my caregiver has created unexpected opportunities for sexual and emotional intimacy.
Written by Soleil who shares their life as a bisexual polyamorous woman living with chronic illness in the American Midwest.
The Battle of Fort V
By Vickey Young
Disability interrupts my sexual relationships. Always. If it’s not my disabilities, it’s my insecurities whispering that someone won’t want an intimate relationship with me because I’m disabled or that they won’t be accommodating. It’s not like the ADA mandates reasonable accommodations in the bedroom.
Intrusive thoughts, flashbacks, and severe anxiety invade intimate moments with any partner. Suddenly, it’s no longer my partner cuddling next to me or kissing me: it’s the devilish monster who waged the war that spawned these thoughts, these flashbacks, this crippling, anxious fear. My brain activates defense mode: searching for signs my partner is going to hurt me, scanning the room for weapons, trying to ground myself and to reduce the growing feeling of panic arising in my chest, telling myself that the hallucinations aren’t real. I try to win back the high ground by taking control, by pausing the moment, by moving slowly, by withdrawing consent, by ending the moment completely if needed. The Security Council housed in my brain advises to not initiate intimate moments or to proceed with extreme caution, shields up, guns drawn.
If an intimate moment isn’t invaded by that, it’s assaulted by two physical disabilities that seek to conquer and enslave my mobility. Arthritis creates an inability to maintain certain positions for too long. Horrific flares completely eviscerate my mobility and stability in certain joints, meaning I can’t bend my knee or stand or move about without my brace. Constantly changing positions to stave off symptoms interrupts intimate moments, sometimes at incredibly inopportune moments. Kneeling, sitting, standing, or laying in certain positions for too long sends shockwaves of pain through my body. My hands and wrists stiffen and are plagued by pain when doing repetitive movements which causes my grip strength to sharply decline. Temporary stiffness during intimate moments, or in any moment, always ends with at least one joint becoming a momentary POW captured by arthritis.
Lupus declares its victory as I lay writhing in pain, bedridden, riddled with ceaseless fatigue. Arthritis conquers a joint or two, leaving me incapacitated and sometimes unable to leave my apartment. Intense fatigue from both forces me to nap away my day. I don’t want company; I don’t want to be touched. I don’t want to be seen like this. Even if I do want to cuddle, my partner’s movements cause pain to shoot through my otherwise still body, meaning it’s not plausible no matter how much my partner or I want to.
Sex-ed or health classes don’t teach how to erase guilt that suffocates me when my disabilities impair me from giving my partner, let alone myself, the craved sexual intimacy. They fail to mention a how-to guide on erasing feelings of worthlessness when you can’t do something because your disabilities have the upper hand thus creating an impossible catch-22:
- Advance, push through the pain, relish the short-term satisfaction, suffer the casualties later
- Retreat, reduce symptoms, take the loss knowing I’m doing the best thing for my health but battle soul-crushing guilt and overwhelming feelings of worthlessness that I’m incapable of doing something I want to do.
I wish my advice wasn’t “Go to therapy” or “Talk to your partner,” but they’re the best allies. Discuss the rules of engagement with your partner; seek help through hotlines or therapists; talk to others with disabilities about your experiences. Never let a partner coerce you into doing something you cannot do or don’t want to do. Never let a partner make you feel guilty or worthless for putting your health before their sexual needs. Don’t be afraid to walk away from partners who refuse to be accommodating.
To read more from Vickey, you can find her on Instagram.