Disability Intimacy is an essay collection that serves as a follow-up to Alice Wong’s Disability Visibility, detailing the intimate lives of its disabled contributors who are some of the biggest names in disability activism and scholarship today like Sami Schalk, Leah Lakshmi Piepzna-Samarasinha, and Moya Bailey. In her introduction, Wong details how she became ill in 2022 just as her memoir The Year of the Tiger: An Activist’s Life debuted and she began editing Disability Intimacy. Her illness, while keeping her isolated also helped her realize her own relationship with intimacy, noting that while she was lonely, she wasn’t alone, relying on caregivers and receiving love from family and friends at a distance and that even the contributors of this collection became a critical lifeline in which she could find joy in editing their work. Even in Wong’s period of isolation she still found intimacy in the work she does, the people she loves, and those who help care for her, further noting that intimacy is more than just romantic love but all relationships people with disabilities have including caretakers, family, pets, and themselves and that intimate acts include more than just sex but “generosity, intentionality, and thoughtfulness.” . This collection is divided into four parts: Love and Care, Pleasure and Desire, Creativity and Power, and Everything and Everywhere and explores all facets of intimacy that people with disabilities can experience and includes multimodal works from traditional essays, interviews, photo essays, and poetry.
The first section of this collection, Love and Care, explores intimate relationships between loved ones and caregivers. One of the more poignant essays in this section include “Rosasharon Teaches Me to Breathe: On Animals, Disabilities, and Intimacies” by Ada Hubrig, where she finds joy in the company of her cat, Rosasharon for their shared experiences as disabled subjects stating, “Rosasharon didn’t have to labor through her pain or pretend to overcome her pains and illnesses. Just by being herself, she was enough.” . While recovering from a medical emergency, Rosasharon becomes Hubrig’s constant companion, curling up next to her through her pain and loneliness, noting “Rosasharon accepted me immediately as myself.” . The essay ends with one of the most intimate acts: Rosasharon dying in Hubrig’s arms reminding her one last time to breathe and just be. It’s a bittersweet moment where despite the sadness of Rosasharon’s death, Hubrig was given the opportunity to return the favor of companionship and care in her pet’s time of need.
The next essay from Love and Care that is particularly compelling is “Care During COVID: Photo Essay on Interdependence” by Kennedy Healy and Marley Molkentin. This photo essay details not only the home health care Healy receives from Molkentin, but discusses issues Healy faced in finding a home health worker who was also willing to abide by necessary COVID restrictions. Healy and Molkentin discuss the intimacy and trust they need to have with each other in order to make this care giver/ care receiver relationship work, hence the term interdependence in the title. Molkentin has to trust Healy to guide her through this care work as this was Molkentin’s first time doing this kind of work. Healy is especially vulnerable as she has to trust that Molkentin follows through on COVID protocols and boundaries set by Healy like not taking public transportation and also has to trust Molkentin with her daily care like showering, lifting her, and even cutting her hair. The two form a close relationship based on this intimacy and trust which is what lead to the creation of the photo essay. Healy explains that the photos for this essay were “a way to take back power that got stripped from disabled people through things like bad media representation, abusive care, or a myriad of other kinds of violence disabled people face” (55).
Section two, Pleasure and Desire include essays that see disabled people as being able to give and receive pleasure and have desires. The essays in this section cover a range of different types of pleasure and desire from romantic desires to finding pleasure in the disabled body. Leah Lakshmi Piepzna-Samarasinha’s essay, “republics of desire: disabled lineages of longing,” discusses their desire to live on their own for the first time in fifteen years. They discuss the intimacy of solitude that comes with living alone as well as her mother’s want for her to be secure, hoping she “would get away and do things she’d never seen—marry a nice, safe man (whatever that was), get a job with health insurance…live in a place where weird, smart femmes were safe,” all to find this level of intimacy and security within themselves. .
Sami Schalk’s essay, “Pleasure Is the Point: On Becoming a Pleasure Artist,” details her work as a pleasure artist grounded in the concept of pleasure activism which she learned from adreinne maree brown. Schalk recounts how this journey to pleasure artist began with how she started to dress, deciding to wear outfits she found pleasurable despite how others would perceive her. This led to a series of experiences where she decided to take nude photos of herself showering at a campsite with friends where she came up with this phrase: “a pleasure artist creates and captures pleasurable experiences for themself and others in the name of healing and liberation for all.” . While pleasure art began as an act of intimacy with herself it turned into a politics of care that expands beyond the self, providing pleasure to all disabled people.
The essays in the third section, Creativity and Power, explore ways creativity can be intimate and how power can be born from acts of care. This section examines creativity from an array of different genres from live performance (“Soa” by Pelenakeke Brown), beadwork (“My Journey with Beadwork” by Sarah A. Young Bear-Brown), disabled queer love representation in media (“Disabled Queer Love Exists” by Tee Franklin), and much more. In “My Journey with Beadwork” Sarah A. Young Bear-Brown, a deaf bead worker, explains how beadwork is a tradition passed down to her through her family. Her family has a long tradition of creating the beadwork used in the regalia worn by the people of the Meskwaki Nation during traditional dance and as an identifier of their tribe at powwows. She explains that beadwork is “the only way to show a labor of love” in her family and that she wants to pass this tradition on to her children (207). For Bear-Brown beadwork is intimate not only in the familial ties she has to it but the way it allows her to simply be herself where her deafness doesn’t overtake her craft.
Gracen Brilmyer also has an interesting piece about the archives and how they are inaccessible to many people with disabilities, whether it’s because archives are physically inaccessible and disabled researchers’ accommodations can’t be met, or that the archives require the status of being an academic or scholar in order to enter them. Gracen invokes Mia Mingus’s concept of access intimacy and expands on it noting that “access intimacy can not only provide a way of making space for those who are with you and ‘get’ your access needs, but can also offer an ethos of keeping disabled communities present, even when they are physically not,” meaning that normative spaces like the archive should be reimagined so people with disabilities can actually have access to their own history . Brilmyer calls for a more creative approach to the archive that include facets of access intimacy, crip kinship, and care in order to make it more accessible. Brilmyer also notes the importance of archiving disability so people with disabilities also know where their history and community came from, and details the intimate feeling of coming across disabled people in archival material that helps them feel connected across time.
Section four, Everything and Everywhere, house essays that fit into a broader category and discuss a variety of topics from Ashley Shew writing about prosthetics acting as a shield to intimacy (“The Leg Chapter”) to Claude Olson talking about the fascination some people have with little people in “Thirteen Considerations of the Holy Bug.” In “A Tale of Three Hospitals” by Jaipreet Virdi, she explains a frustrating experience of being bounced from one hospital to the next while trying to get relief from her endometriosis pain. At the first hospital, after not taking her pain seriously, they thought Virdi may have a malignancy and needed a hysterectomy to remove it but transferred her to a different hospital because they couldn’t perform the procedure. At the second hospital, they kept moving her surgery until they decided that she only had an endometrial mass and not cancer and discharged her. Eventually, she has the mass removed but after moving to the US from Canada, she begins having complications including an allergic reaction. The doctors at the hospital in the US are able to temporarily alleviate her symptoms but with the cost of more tests adding up and no answers, she discharges herself from the hospital further wondering what it would mean to actually be able to cure her illness and what cure even means for her. This essay explores the way the medical industrial complex can dismiss a disabled person’s care and the feelings of hopelessness and frustration that come with it. In the case of Virdi, her advocacy for her right and access to care is present throughout despite not ending in cure.
Moya Bailey’s essay, “Dreaming of Black Disability Doulas” describes Stacey Park Milbern’s idea of disability doulas or “folks who can usher you into disability with ease and care” and how she would have benefited from a Black disability doula to help make her feel more comfortable identifying as disabled . Bailey then crafts imagined conversations with her Black disability doula that showcase her journey into accepting her disabled identity with the guidance of her doula. We see Bailey make mistakes along this journey with internalized ableism but her doula is always there to reassure her when needed. By the end of the essay, Bailey explains, “Disability doulas that are from our communities are essential for disability justice to flourish and take root” and sees disability doulas as models that can help disabled people achieve what they want and need in the world .
Overall, Disability Intimacy is a unique and innovative collection of essays that explores the topic of intimacy through a lens that is largely ignored. In a society where disability is often infantilized and underrepresented, this collection is a refreshing read that allows disabled people to explore their own connection to intimacy, pleasure, and desire. This collection is not only a celebration of disabled bodies and sexuality but of the power of community, access, and love for others and the self. Disability Intimacy would make an excellent read for anyone interested in the lives and lived experiences of disabled people or an introductory class on disability studies. This collection puts disabled voices at the forefront letting its readers know that disabled people are able to live intimate and fulfilling lives and provide reassurance that disabled people are desirable and can and do explore pleasure in all facets.
