Queer and Disabled People Desire Intimacy and Sex in the Ongoing COVID-19 Pandemic
Every time I sat down to write about sex during COVID since the middle of 2021, the pandemic morphed and changed. Masks and vaccine mandates have come and gone, along with safer options for telehealth, food delivery, and at-home COVID testing. My life has fundamentally changed since February 2020 when I transitioned into being disabled, chronically ill, and immunocompromised. For me, I’m still living in March 2020: same restrictions, same fears, but with ever-increasing complacency surrounding me.
Nowhere has this been more a struggle than in my desire for sex and connection. Disabled and chronically ill people like myself are facing challenges to intimacy and connection amid a still deadly, ongoing pandemic. Over two and a half years into this global crisis, and this is not hyperbole; the effects of COVID can still be deadly for those of us who aren’t building up sufficient antibody levels, despite being advised to have three full COVID vaccination doses in addition to recent Food and Drug Administration (FDA) approval for a second booster for elders and immunocompromised people.
Becoming disabled alongside the evolution of this pandemic has forced me to confront the callous realities of how non-disabled people—especially our intimate and sex partners—view our place in the world. This has been difficult for me to believe as non-disabled friends, lovers, and hookups have long left me behind to “get back to normal” and take their chances with ever-increasingly virulent strains of COVID.
According to a March 2022 report from the U.S. Government Accountability Office, an estimated 10% to 30% of COVID-19 survivors develop long-term effects of the disease, with estimations that 7.7 to 23 million people had already developed long COVID in the U.S. by the end of February 2022.
One reason this troubles me is not because of the sex I’m missing out on, but rather that I’m afraid the people I care about are not getting the full picture of how COVID could change their life. The dominant narrative around COVID harm from political and public health leaders has also focused on death and hospitalization, leaving the development of disabilities and chronic health conditions resulting from long COVID out of the conversation.
If there’s one thing I know, it’s that concepts of harm and risk reduction are part of my queer sex life. In fact, I think it’s part of many of our sex as we consider condomless sex, whether to go on PrEP or use birth control to have the types of pleasurable sex we want. However, in my own experience of trying to negotiate sex and risk reduction by asking for mask-wearing, ventilation, and testing, it seems that many in my circle are not treating reducing COVID harm the same way.
As a result, myself and many disabled people are still in a version of lockdown and its overwhelming isolation; some of us crave physical touch, intimacy, and the sex we desire. We may do so because we are at high risk for COVID harms. Perhaps the anxiety and unpredictability of being out in a world with nonexistent mask and vaccine mandates compounds our mental health disabilities or increases the chance an exposure could postpone a life-changing upcoming surgery. For many valid reasons, disability, chronic illness, and our health may be at the center of our decision to continue isolating, masking, and reducing contact with others.
Even outside of pandemics, isolation from intimate and sexual partners can be part of one’s experience of illness or disability. Disabled people—especially those who are institutionalized, living in long-term care facilities, or living in other types of group housing like rehabilitation housing—have faced isolation from intimate partners while being placed at risk for COVID harm from personal care and health care workers. The same can be said for those of us who live alone but rely on personal care attendants and other home health workers, which can be necessary to keep us alive. As a result, we may be forced to forgo seeing partners, hookups, and lovers to reduce our contact with the outside world as much as possible.
As someone who feels like these days I’m going steady (platonically, of course) with my physical therapist, acupuncturist, and rheumatologist, I have struggled to have sex and cultivate intimacy with partners during the pandemic. I wanted to learn from others who were still finding ways to do so for themselves.
Difficulties Cultivating Intimacy Existed Before COVID
Back in 2021, I first spoke to Wes Morrison, who is a senior advocate for LGBTQ elders. He sees the profound impact isolation has on elders specifically, especially for those who are long-term survivors from the early days of the AIDS epidemic. While the COVID and AIDS pandemics have been shown to be similar—albeit not the same—for Morrison, the parallels are central to his experience of COVID.
Between 1990 and 2000, Morrison lost 100 friends, which inspired his work combating LGBTQ elder isolation with AARP and Washington, D.C.’s Iona Center. “Everyone that I was going to grow old with is gone,” he said, noting that the overwhelming rates of death among Black elders throughout COVID have brought up overwhelming grief and loss that he experienced in the AIDS epidemic decades ago. He especially grieves the loss of younger people throughout both pandemics. Morrison said that once, “like Blanca in Pose, I was their mother,” feeding and clothing them and getting them to medical appointments.
“Part of the reason I’m so lonely is because everybody was younger than you,” Morrison said as our conversation came to an end. “They never got a chance.”
This type of isolation is at the heart of how queer elders and disabled people have long been removed from our society. It’s certainly not a new occurrence relegated to COVID. Lacking the freedom of movement and ability to be in our larger communities—especially queer and sexual communities—has made the pandemic isolation both commonplace and cut deeper.
“Others who have disabilities like mine are used to not being able to go and do whatever they want whenever they want,” remarked Robert Andy Coombs, a queer, disabled artist who spoke with me last fall. For Coombs, pandemic isolation has not differed from his usual isolation within queer communities. However, Coombs noted that “the rest of the world actually got to feel what it’s like to be us” when shelter-in-place dramatically changed the life of non-disabled people.
Coombs is right: Ableism and exclusion are not new in queer spaces; however, the pandemic has certainly highlighted how fast non-disabled people in our communities will forget about precautions that benefit us all once the majority of folks seem to not be at risk of harm.
Robert Kingett, a blind and gay journalist with cerebral palsy, echoed this sentiment when it came to having sex within the gay community before the pandemic. For Kingett, forced isolation during lockdown gave them the space to realize how much ableism they had dealt with from sex partners since their teenage years.
“The pandemic allowed me to stop and really take note of what I want,” he wrote in our email exchange. “Sexual solitude has made me embrace my autonomy more than ever before, in addition to saying that I definitely think I’m on the asexual spectrum.”
While Kingett is exploring solo intimacy, they are not alone in making that transition. Almond Linden, a disabled, chronically ill, and traumatized sex educator, has been turning inward and focusing on regulating her nervous system, which has meant moving from polyamorous dating to creating her own sense of eroticism. “The simplicities of my erotic world have really nourished me,” she said in our written correspondence. “Isolation has given me the time and space to really witness how much my erotic desires are connected to my nervous system.”
Linden confirms that transitioning into solo-intimacy as a disabled person can challenge the importance of our bodily agency and being desired by others. “It is incredibly valid to miss, crave, and yearn for touch and intimacy from another,” Linden noted, understanding that lack of touch and connection can be a complex grieving process.
For me, my grief about losing the sexual connections I had with others goes hand in hand with the anger and frustration I feel at the lack of recognition of disabled people’s dignity and worth. As every level of government has lifted mask mandates and restrictions twice now since last summer when I began writing this piece, the gaslighting disabled and chronically ill people have faced is overwhelming. We are being told at every level of our lives—from political and public health leaders who are “encouraged” that only disabled and chronically ill people are dying of mutating strains of the virus to our friend groups and communities leaving us behind closed doors—that we should be assuming the risk of COVID harm to be able to fully participate in society.
But why should anyone—disabled or not—be forced to give up effective protective strategies to get the affection and care we need?
Someone asked me if they think there will be a major effort to gaslight people newly disabled from the pandemic…
Short answer is: they won’t have to. pic.twitter.com/9Iw0KDe4ax
— Imani Barbarin, MAGC | Crutches&Spice ♿️ (@Imani_Barbarin) July 23, 2021
In a July 23, 2021 Twitter video, disabled activist Imani Barbarin describes this widespread gaslighting and notes that it will extend to people who develop long COVID as they transition into disabilities and illnesses of their own. “I really don’t think it will take that much effort,” Barbarin says, responding to a comment asking if the government is planning to gaslight people who develop disabilities from long COVID into thinking they aren’t disabled. When it comes to people with newly acquired disabilities, “they’d rather believe they can ‘overcome’ disability,” Barbarin continues. “People stop inviting you to things, your job becomes harder to do, so your boss [fires you], so then you’re more isolated. Disability itself is isolating.”
Keeping Ourselves Safe and Connected
The invisibility of disabled people’s right to desire and connection is evident throughout our society. However, it’s especially evident since even COVID research on coping strategies for those of us stuck in long-term isolation due to disability does not capture our desires for sex and intimacy.
JD Davids, an illder (ill elder) living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID, has noticed an absence of discussions of sex in long COVID research. “I’ve filled out maybe a dozen research surveys, some specifically for chronically ill people, about coping methods during COVID—and none have asked about sex.” Further, Davids affirmed that sex is part of his well-being as someone with long COVID and should be taken into account for all disabled and ill people impacted by COVID and forced isolation.
In March 2020, Davids launched the first published guide on having sex in the pandemic when mass lockdown efforts began. “How to Have Sex in the COVID-19 Coronavirus Pandemic” uplifts strategies that disabled and ill people have developed to access connections virtually and harm reduction strategies for IRL hooking up. “Human touch is a powerful thing,” Davids writes in his article. “But so are human voices, photographs, [and] videos.”
While I’ve discussed ways that many of us are isolating and turning in toward ourselves to tap into intimacy, people with disabilities are not a monolith; we all have various ways in which we are interacting with the pandemic and COVID risk.
The focus on COVID harms for disabled and chronically ill people has mostly discussed our possibility of death, hospitalization, and serious long COVID effects. However, others in the disability community are not at risk in the same ways, since their disabilities may not impact their immune system, heart, or respiratory systems, which make some of us medically vulnerable to harm.
Wanting to keep physical connection in her life led Robin Wilson-Beattie, disability sexual and reproductive health educator and writer, to change up intimacy arrangements during shelter-in-place efforts in early 2020. Changing schedules and limited living space in a one-bedroom apartment with her husband meant trying to create workarounds for in-person sex with her partner.
“When I missed a week of seeing my partner, my body mourned human touch and connection,” Wilson-Beattie said. The pandemic did lead her and her husband, who is asexual, to develop new forms of communication and no-touch intimacy. While Wilson-Beattie’s desire itself didn’t change in the COVID pandemic, “how often I was able to express it was certainly negatively impacted.”
Darren* (name changed for anonymity), a sexual health professional who works at a Washington, D.C. community health center, also spoke about the importance of staying sexually connected in person with others outside of his marriage. He spoke to me from personal experience—as someone who is in an open relationship and has been diagnosed with anxiety—about how he and his husband negotiate safety in their sex lives together and with other partners.
Frustrated by the lack of clarity around testing guidelines, cutbacks to free testing programs, and the failure of the D.C. Department of Health to report new COVID cases to the Centers for Disease Control and Prevention as well as D.C. residents, Darren recently made the decision to treat testing for COVID like testing for STIs, in order to gain a sense of control and clarity.
“When I go to an event or spend time around people maskless, I make sure to get tested a few days before and after,” he said in our phone call. Negotiating that sex partners test ahead of time is “part of consent” for him.
Consent and building trust with partners around our COVID boundaries is something that has come up in my own (very limited) encounters over the past two years. I have a very high distrust of strangers who I have not yet met, one exception being a recent hookup who shares my risk profile as he is going through chemotherapy. We built trust and established consent by agreeing to test before and after meeting up, but we also found ways to reduce our risk while focusing on pleasure (which I’m calling the “one mask on, one mask off” rule—for which you can use your imagination).
As quoted in a 2021 article from The Atlantic on queer sex and innovation, Virginia artist Ayo Dawkins described that trust is essential and is changing the way their sexual network looks. “Not that I trusted everyone I was with pre-pandemic,” noted Dawkins. “But I knew sex wouldn’t kill you. You have condoms to protect you from STDs and STIs, and you have Truvada (PrEP) to protect you from HIV, but nothing could protect you from COVID aerosols.”
The article’s author goes on to discuss how trust is changing the way we connect sexually during—and eventually after—these watershed years of the COVID pandemic, noticing that some queer people are opting for more closed networks.
However, the author fails to mention queer and trans disabled or ill people who are creating these worlds with disability access at the center out of necessity and innovation of our own.
After speaking with such a range of disabled and chronically ill people, I can already envision how moving through this third year may change what I want and from whom. I believe in the power of disabled, queer, sexual brilliance that continues to innovate how we connect with our partners and lovers, as well as our own eroticism during this ongoing public health crisis. We are worthy of affection and the kinds of sex, touch, and intimacy we desire, no matter what the world looks like outside.