 | Disability Intimacy is a provocative collection of insightful essays and personal memoirs by individuals who consider themselves disabled. The authors’ disabilities are wide-ranging, including profound physical impairments requiring regular caretakers, individuals with autism and/or ADHD, folks living with chronic pain, and a writer with plural personalities. The book reminded me how impossible it is to truly appreciate another person’s challenges—a client’s unrelenting pain or my spouse’s low vision and neuropathy. Another powerful take-away is that all of us, if we live our natural lives, will likely end up qualifying as “disabled” at some point. |
COMPELLING QUOTES:
- It’s not just the pain. It is the exhausting fact that you have been in pain for so long.
- I have seen the limits of the grind. I want my children to learn how to be lazy.
- It’s okay for us to be who we are and take up our space in this society
- My body is the oldest story in the world. Part broken, part brilliant, all nuance, disability offers a layer of perspective that is unique and profound
- The pain overwhelms you, steals your time, and twists your body-mind into grotesque forms such that you no longer recognize yourself.
- I think pain is grief.
- Sometimes hope can be the cruelest teacher.
 | ABLEISM. Namoi Ortiz is especially eloquent exploring ableism, the systemic prejudice favoring the able-bodied: “One of the foundational elements of ableism is a fear of vulnerability, a desire to push away and ignore what reminds us of helplessness….This desire to push away leads to judgment, exclusion, and oppression.” She also articulates the challenges of living in an ableist world: “Having to plan for everything. And then having a backup plan for each plan. The brutal experience of having little pieces of your humanity splintered away as you try to wedge yourself into a system that is supposed to help you survive.” |
INTIMACY. Some authors describe the vulnerability of being bathed by a caretaker, or the intimacy of loving friendships:
“Intimacy comes in the space where my friend might…know that I’m not in a space to have a conversation. She’ll just bring over my favorite treat, give me a hug, and leave.”
There is also a selection of essays on sexual intimacy:
Jade T. Perry, a self-described pleasure artist, writes: “I began to wonder how I would treat my body-mind and my pleasure differently if I had not been impacted by ableism”
Ortiz adds to this conversation:
“Crip sex takes all the creativity earned by having to function in oppressive and inaccessible environments (having uncomfortable and awkward conversations, explorations of adaptive equipment, explaining to another person exactly what you want done to your body) and puts it to amazing use.”
“Intimacy comes in the space where my friend might…know that I’m not in a space to have a conversation. She’ll just bring over my favorite treat, give me a hug, and leave.”
There is also a selection of essays on sexual intimacy:
Jade T. Perry, a self-described pleasure artist, writes: “I began to wonder how I would treat my body-mind and my pleasure differently if I had not been impacted by ableism”
Ortiz adds to this conversation:
“Crip sex takes all the creativity earned by having to function in oppressive and inaccessible environments (having uncomfortable and awkward conversations, explorations of adaptive equipment, explaining to another person exactly what you want done to your body) and puts it to amazing use.”
 | PROSTHETICS. Having worked with clients learning to walk after lower-limb amputations, the essay Ashley Shew was particularly impactful: “…the promise of prosthetics—that they re-enable us and make us whole again—requires our constant work to be ‘good crips,’ those who confirm the power of technology over disability.” “There is a list of people I try to appear as abled as possible to. People who would weaponize any perceived incompetence against me. People who would swoop down in helper mode to make me doubt myself.” She accuses the able-bodied healthcare providers of wanting to "be heroes” versus being a collaborators offering expertise so clients can navigate their healthcare choices for themselves. |
PLURAL PERSONALITIES. The most mind-expanding essay for me was written by The Redwoods, a plural system of personalities. They were diagnosed with Dissociative Identity Disorder (multiple personalities), but didn't find it helpful in navigating the world as a plural system. They describe how internal personalities take turns being “in front” and interacting with the outside world.
The Redwoods write: “Plurality is real. We are here. We exist. A generic term for a group of people in a body is a system. The Redwoods is our system name. Individual members in the Redwoods have our own names, genders, ages, facial and vocal muscle group patterns, interests, skills, and tastes….there are currently about a dozen of us here.”
They describe a typical morning: “Going to the bathroom [is] a kind of odd task they got used to sharing a long time ago. Messing about, catching up on their shared phone….As breakfast begins, it feels like most people [within the plural] aren’t even up yet.”
“While the unit we share is a one-body life, the dynamics have commonalities with a multi-body family. Many call this internal community. We value quality time together. We take turns savoring a special meal at a beachside restaurant, or witnessing a solar eclipse, delighting not just in the events but in each system member’s reactions. ...We discreetly switch to the people with the highest pain tolerance for the worst part of dental appointments, but also let others who want to practice being brave quietly step in before dashing away.”
“Romance between plurals is very special.... The constellations of relationships and abundance of possible combinations between many people in two bodies is thrilling. … One person in our system might be dating a few people in your system, play an older friend role to others, and help raise some of your youngest system members.”
“It’s unlikely that someone will be intimate with everyone in a system or across two systems, but it’s important that everyone is welcome and neighborly in the partnership community between two bodies. …We don’t befriend every system we meet any more than every singlet we meet.”
The Redwoods write: “Plurality is real. We are here. We exist. A generic term for a group of people in a body is a system. The Redwoods is our system name. Individual members in the Redwoods have our own names, genders, ages, facial and vocal muscle group patterns, interests, skills, and tastes….there are currently about a dozen of us here.”
They describe a typical morning: “Going to the bathroom [is] a kind of odd task they got used to sharing a long time ago. Messing about, catching up on their shared phone….As breakfast begins, it feels like most people [within the plural] aren’t even up yet.”
“While the unit we share is a one-body life, the dynamics have commonalities with a multi-body family. Many call this internal community. We value quality time together. We take turns savoring a special meal at a beachside restaurant, or witnessing a solar eclipse, delighting not just in the events but in each system member’s reactions. ...We discreetly switch to the people with the highest pain tolerance for the worst part of dental appointments, but also let others who want to practice being brave quietly step in before dashing away.”
“Romance between plurals is very special.... The constellations of relationships and abundance of possible combinations between many people in two bodies is thrilling. … One person in our system might be dating a few people in your system, play an older friend role to others, and help raise some of your youngest system members.”
“It’s unlikely that someone will be intimate with everyone in a system or across two systems, but it’s important that everyone is welcome and neighborly in the partnership community between two bodies. …We don’t befriend every system we meet any more than every singlet we meet.”
Disability Intimacy is an impressive reading experience. Not every essay caught my attention, but those that did had a strong grip.
I’ll close with a quote by Moya Bailey: “While I am still ambivalent about the need for disability to be understood as an identity, the power of claiming a disability culture, community, and intimacy cannot be ignored.”
I’ll close with a quote by Moya Bailey: “While I am still ambivalent about the need for disability to be understood as an identity, the power of claiming a disability culture, community, and intimacy cannot be ignored.”
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