Fucking While Being Fucked Over

An introduction to disabled sexual life under late-stage capitalism with a dose of everyday anarchism.

[Image description: Black text on white background that reads “Fucking While Being Fucked Over by Caz Killjoy.” Beneath the text are six icons: the first is a pile of coins with an upwards slanting arrow, symbolizing capitalism; the second is two white open hands with three hearts floating above them, representing care, interdependence, and community; the third is a black anarchy symbol; the fourth is a waving disability pride flag; the fifth is a turquoise-colored vibrator, representing sexuality; and the sixth is a red heart with a rainbow infinity sign within it, representing non-monogamy.]

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Toward the end of the lockdown era of the pandemic, I was finally approved for a Medicaid-provided caregiver, which was help that I desperately needed. Due to the combination of my disabilities, I can’t prepare food or cook, and can't do a lot of things that most people take for granted for themselves. But I can still fuck. As a kinky, queer, consensually non-monogamous, multiply disabled genderqueer person, my sexuality is largely considered abhorrent by the majority of people in the world. I’m all too aware of this.

I was nervous the first time the new caregiver came to my apartment. Okay, I had a panic attack. Prior to the caregiver’s arrival, I had tried to de-personalize my home, à la the scene in La Cage aux Folles where the gay protagonists frantically attempt to remove all the sexy accoutrements

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from view in their home in anticipation of a visit from their child’s fiancée’s parents, who are uptight ultra-conservative bigots. I stowed away my sex and kink toys and safer sex supplies. I removed all my queer art from the walls. I hid the titles of my books. I put myself back in the closet in the hope of being treated like the worthy human I am: a life worthy of life.

It was all for nothing. Every time the caregiver came by, I had a panic attack: a reminder of my experiences of violation of my privacy, rights, body, sexuality, and home. The anxiety. The fear. The shame. Having a stranger in my home, in my safe space, felt like a violation—despite my need for the help from this person. It was a terrible reminder of trauma from my childhood. After less than a week of visits (which included night terrors every night and panic attacks every day), I withdrew from the program, giving up my right to the Medicaid-provided assistance that I desperately needed and had every right to receive.

Without the caregiver, my romantic and sexual partner of only five months did what I never imagined anyone would do for me: they started reliably providing the care I needed. They recognized that in the midst of our NRE

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was the existence of what is essentially a needy metamour

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: my disability’s needs for assistance with the activities of daily living

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. And those needs have to be met. So, after much discussion between my new partner and I about the level of care I need and the time commitment it would require, I reapplied for the Medicaid waiver

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that provides in-home care and was quickly re-approved. My partner set out to join a home health agency. Now, my partner is contracted by Medicaid to provide care for me.

The thing is, my partner already has a full time work-from-home job: a well-paid career through the federal government. Because Medicaid is funded federally, that means my partner can’t “double-dip,” meaning they can’t be clocked in to do both jobs at the same time. Therefore, we are constantly juggling time and tasks between their two jobs and all of my healthcare appointments and other needs, which is made all the more difficult by the fact that we don’t live together. It hasn’t been easy, but somehow we have managed… everything except our sex lives.

As many scholars, writers, activists, and everyday caregivers have noted, caregiving and receiving care has a tendency to destroy pre-existing sexual relationships between caregivers and those receiving care. On the whole, caregiving isn’t naturally sexy. It’s repetitive, draining, and often thankless work. Though I try to remember to express my gratitude to my partner and not take them for granted, I don’t always succeed. Especially when non-monogamy

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comes into play.

My partner who provides my caregiving welcomes and encourages me to have other sexual / kink / romantic partners. We began our relationship with the understanding and acceptance that we are both practitioners of consensual non-monogamy

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; my partner feels compersion

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toward me and my relationships with others. They encourage me to enjoy myself with others as I can. But because my partner is overwhelmed with work and caregiving, and after my medical needs are met I’m expending what little energy I have left with other partners, the thriving sexual relationship I once enjoyed with my caregiving partner has waned. It’s not that I no longer find them desirable or want to engage in sexual activities with them – I do – but the stress of the caregiving relationship has interfered with our sexual connection.

How do we find the balance between sexual care and in-home care? How do we, as disabled people, have ethical sexual relationships with the people we rely on for our care? Many people say the two should not be mixed due to the difficulties of the power dynamics

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involved with providing care. That argument aside, how do we find the energy and desire after the caregiver has prepared three meals per day, provided transportation to and from medical appointments, tidied up the apartment, taken out the trash, assisted with grocery shopping, and worked an entire other job – adding up to more than 65 hours per week of work – and the person receiving care has nearly drained themselves with medical appointments and social services administration? How do we fuck each other when a confluence of factors are fucking us over? How do I fuck my partner-caregiver while stuck in this ableist classist cisheteropatriarachal colonialist racist capitalist system?

A better world is possible for disabled people – and our caregiver-partners – if we can muster up the extra time and energy to make it happen. If you’d like to be a part of a growing discussion on this topic, please leave a comment or reply send me a message.

1. According to the Cambridge Dictionary, accoutrements are “the equipment needed for a particular activity or way of life.” Used in this essay, accoutrements refer to the items which may be used to signify one’s sexual identity, including but not limited to art, books, clothing, sex toys, and other items such as accessories and certain types of equipment or gear.

2. According to the Polyamory Society, NRE (new relationship energy) is “energy that flows between partners in a "new" relationship, the excitement and discovery that occurs during this time as opposed to old relationship energy that is part of a more settled, stable, comfortable time in the relationship.”

3. According to Amy Gahran/ Aggie Sez, a metamour is “A person who is in an intimate (romantic or sexual) relationship with an intimate partner of yours.” I would expand that definition to include kink relationships, companionate relationships, and other forms of intimate relationships.

4. Activities of daily living, frequently called ADLs, are the tasks of self-care for which Medicaid evaluates a client (the person receiving care) on the level of assistance they require to have those tasks met. For me, those tasks include meal prep and clean up, medication management, personal hygiene and toileting, ordinary light housework, laundry, grocery shopping and community errands, and transportation to medical appointments.

5. I receive a “Home and Community-Based Services Waiver” which provides long-term care services and support in my home instead of my needing to live in an institution to have my needs met. Medicaid waivers like mine allow disabled people to live somewhat independently in the community versus in a setting such as an assisted living facility. To qualify for this waiver and receive the services, recipients cannot have more than $350 per month in income.

6. Non-monogamy is a style of relationship that may include romantic, sexual, kink, and even certain platonic relations. Within non-monogamy, participants may have more than one of these relationships at the same time.

7. Consensual non-monogamy is when all parties/ partners involved consent to be in one or more non-monogamous relationships.

8. According to the Polyamory Society, compersion is “the feeling of taking joy in the joy that others you love share among themselves, especially taking joy in the knowledge that your beloveds are expressing their love for one another.”

9. According to GoodTherapy, “Power dynamics describes how power affects a relationship between two or more people.” In a relationship between a caregiver and someone receiving care, the caregiver has more power than the person receiving care due to the person receiving care being reliant upon the caregiver for that care.

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