Disability Intimacy: Essays on Love, Care, and Desire by Alice Wong

Disability Intimacy: Essays on Love, Care, and Desire Reviews

• 
  emma

  i'm an alice wong stan.
  
  and unsurprisingly, this was wonderful!
  
  like every collection, it had its stronger moments and its weaker ones, but this was a really striking and enlightening book.
  
  bottom line: should probably be required reading.
  
  (thanks to the publisher for the e-arc)
• 
  Mai

  Disability Pride Month
  
  I don't know why it took me so long to pick up this book. It was both informative and heartwarming. Disability isn't a monolith. The intersectionality between disability (and the differences within this), queerness, and people of color was handled with nuance. While the essays differed in length, and some meant more to me than others, I will say I both enjoyed myself and learned a lot.
  
  📱 Thank you to NetGalley and Vintage
• 
  Richard Propes

  With "Disability Visibility," Alice Wong shook us all up with her remarkably constructed collective of writers sharing with refreshing openness and honesty the contemporary disability experience.
  
  As a follow-up to "Disability Visibility," Wong is back with "Disability Intimacy: Essays on Love, Care, and Desire."
  
  I should start, I suppose, by telling you just a little bit about myself. I'm a paraplegic/double amputee wheelchair user with spina bifida who has, in just the past three months, also survived both bladder and prostate cancer. I'm well past my life expectancy and have also accomplished far more than most anyone expected.
  
  I was married in my early 20s, briefly and poorly, and I also spent a good majority of my 20s shouting an enthusiastic "Yes!" to anyone and everyone who was interested in me sexually whether I liked them or not and even if they found me to be nothing more than a sexual novelty or curiosity (rather common, actually). My years of being a survivor of sexual abuse/assault as a child and adult have undoubtedly complicated matters.
  
  Fortunately, I eventually figured out that it was not really sex I desired but intimacy. While the two can certainly peacefully co-exist, and often do, it's certainly not mandatory and over the years I've discovered far greater satisfaction in friendships than anything romantic. Over the years as my disability worsened, the act of sex became more challenging and painful and after my most recent cancer bout it's removed from the equation.
  
  My dream of one day being Richard Gere in "Call Me" is left in the dust.
  
  Thus, I approached "Disability Intimacy" with a tapestry of anxiety, hesitation, exhilaration, and an awareness that I'm at this unique place in my life where intimacy, emotional and physical, is both craved and feared.
  
  "Disability Intimacy" is, as one would expect, the much anticipated follow-up from one of the leading disability activist voices. Wong is uncompromising in her views, simultaneously bold and revolutionary while also being communal and surprisingly vulnerable. It's important to note, however, that Wong is the editor here - "Disability Intimacy" is a collective of essays on love, care, and desire from a diverse community of voices with a diverse array of experiences in the realm of intimacy.
  
  "Disability Intimacy" defies easy description. It is no one thing. It is not solely about sex. It is also not devoid of discussions about sex. It is not solely about romantic love. This is not a warm and mush collection of essay - in fact, it is often quite intellectual and grounded in thought and meaning and discussions around politics and social justice.
  
  "Disability Intimacy" invites a discussion of what intimacy is and also invites a more inclusive approach to it with broader and more universal definitions of what it means to be intimate with another human being.
  
  For me, intimacy is an invitation into fullness of relationship with another person or living being that is based upon mutual love and respect. I consider friendship just as intimate as a romantic relationship - the intimacy is simply expressed, in most cases, differently.
  
  "Disability Intimacy" explores caregiving, community, access, and friendship and how these things can offer us alternative ways of thinking about the connections that we form with others. While many with disabilities shy away from honoring "forced intimacy" or intimacy created by caregiving relationships, I lean toward a broader perspective that finds some beauty in the way vulnerability can create intimacy in different ways. Of course, this is different with "paid caregivers" than the caregiving that happens naturally in everyday life.
  
  Again, "Disability Intimacy" challenges us to think about these things.
  
  "Disability Intimacy" does certainly explore sex, sexuality, sexual liberation, and disability justice. "Disability Intimacy" talks about the joy of sexual discovery, disabled love stories, disabled joy, and disabled kink.
  
  25 voices here. 25 original pieces brilliant in their own individual way and all curated by the brilliance and sensitivity of Wong. There are essays, photo essays, poetry, drama, and even erotica honoring the full spectrum of the disability experience with dreams, fantasies, and deeply personal revelations.
  
  What isn't here? Stereotypes. Shaming. Othering. Ableism. Inspiration porn. Infantilizing. So much more.
  
  "Disability Intimacy" is bold, daring, revolutionary, challenging, vulnerable, empowering, well-informed, intelligent, daring, loving, compassionate, sensual and, yes, downright intimate.
• 
  Kendra

  I always want to like disability activist Alice Wong's edited collections more than I actually do. The idea here--an anthology of writings on disabled intimacy, in its many varied forms--is brilliant and needed, but many of the essays included didn't do much to help me learn more about the ways the disability community--of which I am part--thinks about intimacy. There's a lot of demanding and in many ways the valorization of taking rather that giving, and the idea of intimacy often seems very transactional--but often one-sided--for many writers. It's a discomforting read, and I've been working through my thoughts on it slowly, trying to process and make sure I am being open in my reading and my empathy and compassion, and still, I feel that there's a a gaping hole in the center of the book, where disabled caregivers might have been more highlighted, and the intimacy of disabled families.
• 
  Panda

  Audiobook (11 hours) narrated by a full cast, including:
  
  Jenna Bainbridge
  Frank Bishop
  
  Anna Caputo
  Danielle Morsberger
  
  Risa Mei
  Andy Garcia
  Stephanie Gould
  
  Carmen Jewel Jones
  
  Alejandra Ospina
  
  Sanya Simmons
  
  Leanne Woodward
  (not a complete list)
  
  The narration and audio were OK to good, but imbalanced.
  One of the issues was in the pacing, for example the story "Care during Covid" was much faster paced compared to all of the other stories.
  There were obvious edits.
  For the most part the background was clear and there weren't any erroneous noises.
  
  This was a difficult review to write. As a disabled person I looked forward to reading stories from my peers. For the most part, as you will read, that is what was delivered. Some of the stories were incredible, be they uplifting, sad, or tormented. Other stories had other agendas focusing on racism and being queer, instead of and not in addition too, being disabled.
  While all of those who had stories to tell deserve to be heard, and all of the contributors are disabled, all of the stories were not about disability intimacy. Those written about things other than disability intimacy should have been published elsewhere where they could be appreciated in the correct context.
  
  
  There were 40 independent stories. Some of them were excellent, including the entire first section, which dealt with love, self love, love between a parent and child, friendships, family, and romantic relationships. This section, labeled "Part I" felt so relatable in a lot of ways. The stories were open, honest, raw. People shared private thoughts and feelings that I could understand. A lot of which made me feel understood.
  
  There continued to be a lot of great stories throughout the book, however some of the stories lost the plot and went off the rails. Instead of speaking about their disability in the context of 'love, care, and desire' as the book is titled, they repeated buzzwords over and over again, sometimes forcefully, and I felt lectured as if the storyteller was angry about other things (like racism and queerness without mentioning disability), outside of the scope of the story, but here I was a 'captive audience.'
  
  Alice Wong, as the named author should have reeled in and redirected those couple of stories. Reminded the authors what the book was about and allowed or assisted them in rewriting or telling a different story that was more in line with the overall book.
  
  "Republics of desire: disabled lineages of longing" by
  Leah Lakshmi Piepzna-Samarasinha was one of the longer stories. It started off strong, with some lewdness, but OK, as this is their story and they were telling it openly in their words. As it went on, it dripped in pain for both themself and their life and their mother, who was also disabled. It dived deeper and deeper into an abusive childhood, rape, racism, queerness, and then continued on and it seemed to become forced and more lewd, just because they could be.
  I went back and re-listened to this story to make sure that the childhood abuse, several mentions of rape and increased lewdness did not skew the story for me as I wanted to be fair. Again, it's their story and their words, but I felt like it was a lot for this collection. As this was my introduction to this activist writer I am being dropped in blind into something that was much harsher than what I was expecting. (note: this is not one of the stories that I thought lost the plot or needed to be reworked. I do feel it could have been softer as part of a collection, but it was very relevant.)
  
  Overall I did like the collection. I would recommend picking it up in print so that it's easier to skip around. I also put
  Disability Visibility: First-Person Stories from the Twenty-first Century on hold as I missed that one and it seems that a lot of the reviews preferred that one, out of the two.
  
  Recommend.
  
  EDIT: I ran across this discussion on the Harvard Book Store YouTube channel between the author of the book,
  Alice Wong, along with two of the books short story authors,
  Nicole Lee Schroeder, Ph.D. (outside link to Nicole's listing in Kean.edu directory), and
  Leah Lakshmi Piepzna-Samarasinha. This discussion is accompanied by live ASL interpreters.
  
  
  https://youtu.be/SPzRYumUKVs?si=u_u5E...
• 
  Corvus

  This is my first ever dnf collection from AW. I found many of the essays problematic for multiple reasons. I mentioned the issue with the animal essay already. There is a shallow identity politics woven throughout so many of these where people just repeat the same few labels over and over and over without engaging much more with them than that- as if the labels themselves are revolutionary and not what it means to exist within and outside them. There's one essay from someone- whose work I'm increasingly liking less and less- who is diagnosing her mom with her own self diagnosis and calling a straight woman a femme. I'm just not getting much out of it too balance out how annoyed I feel. I'm not sure if this makes me more conservative or less.
• 
  Shannon

  An incredibly moving and vulnerable collection of essays from a diverse group of disabled individuals and I am just so grateful that Alice Wong managed to find the strength and time to compile and edit this book in the midst of her own recent health challenges.
  
  I was pleasantly surprised to discover that many of these essays were written by neurodivergent authors and there was a number that cover topics such as the complex caregiver-"patient" relationship and the toll that takes on both as well as the unique level of intimacy and trust involved in such relationships (something not talked about a lot).
  
  Other essays talk about the challenges of finding romantic partners or taking control of their sexuality in various ways to celebrate and profit from their disabled bodies. All of these essays are deeply personal and offer new insights into disabled love, desire and intimacy and I couldn't have enjoyed it any more if I tried.
  
  Many thanks to NetGalley and the publisher for an early digital copy of this incredible book. This is a must read for both disabled and able bodied folks alike and a wonderful companion to Wong's earlier book, Disability visibility.
• 
  Tara

  This was excellent, a beautiful collection of essays covering so many different aspects of disability intimacy. Love, care, and desire are covered but in so many different and nuanced ways. I can't recommend this enough to everyone. Reading this as a person with multiple disabilities, I felt so seen in so many essays, I know there are a few essays I will often return to.
  
  Thank you to the publisher Vintage for the gifted advanced reader copy, which included an audiobook version. The audiobook is also excellent and read by a full cast, highly recommend it.
• 
  zach • booksthatslay

  An anthology that takes a tender, honest look at intimacy from the perspective of disabled folks. These essays explore the importance of community, caregiving, friendships, and access as they relate to the definition of intimacy. There is a lot of nuances when trying to define what intimacy could mean and this collection does an excellent job of showing the reader those nuances. Alice Wong has a gift for bringing together brilliant minds and compiling collections that will shift your perspective in the best way possible (see also Disability Visibility: First-Person Stories from the Twenty-First Century), and this collection was no exception. My own view of intimacy has been changed for the better.
  
  Favorite Essays: “To the You That Used to Be Home: An Anatomy of a Disabled Heartbreak” by Mia Mingus, “Elegy for a Mask Mandate” by Ellen Samuels, “Staring at Curvature” by Travis Chi Wing Lau
  
  Thank you to Vintage for the eARC on NetGalley.
• 
  Sofia

  Here are my jot notes thoughts:
  
  - felt disjointed and didn't like the order/organization of the essays
  - some essays I really enjoyed and would recommend but there were a lot of misses too
  - I was expecting something more like Wong's other essay collection but this one just didn't make me think too critically or challenge me in a way I wanted it to
  - not a bad book per say, just okay because of the quantity of essays that felt like a chore to read
  - liked the introduction by Wong, and her writing is lovely
• 
  Emily

  it surprises no one that my favorite essay was about an autistic person finding community in scifi and fantasy fandoms. tbh i didn't get nearly as much out of this as disability visibility.
• 
  Jessica

  Alice Wong is moderating a series of virtual/online panel discussions with contributors to this book in association with The Longmore Institute on Disability and the Disability Visibility Project.
  
  Hear from panelists featured in the anthology as they explore disability and intimacy themes tied to romance, community, caregiving and friendships.
  
  To register:
  March 26, 2024 -
  tinyurl.com/DisabilityIntimacy
  April 25, 2024 -
  tinyurl.com/DisabilityIntimacy2
  May 23, 2024 -
  tinyurl.com/DisabilityIntimacy3
• 
  Lauren (lololovesthings)

  Made me feel so many things. Made me think about my own reality and life and love and friendship and family as a disabled person. Ooof. Going to need to process this because it hit so close to home, but needless to say, 5 stars.
• 
  Rebecca Parten

  Thank you to NetGalley and Vintage Anchor for an advanced reader copy. The opinions expressed are mine alone.
  
  As a cis straight disabled woman I was intrigued by this anthology. I was already familiar with some of Alice Wong’s book and advocacy. I also acknowledge my privilege of being a white, highly educated research associate in the area of gynecological and reproductive health for women with physical disabilities. I wanted to read “Disability Intimacy” for both personal and professional reasons. Personally, I found some of the essays especially relatable; describing similar experiences in terms of varying degrees and types of intimacies. Others essays opened my eyes to different perspectives and experiences. I think this is an important and diverse collection that anyone interested in the area of disabilities, intimacy and sexuality should read. I did find some of the verbiage a bit hard to read because it was sexually explicit. But to each their own in terms of how they want to express themselves.
• 
  rosie (donna tartt’s version)

  i have barely started this book.
  "I would tell you about how I rushed to the hills of forgiveness with open arms and waited there for you for hours, days, years...a decade before hanging my head, arms wrapped around myself, and slowly, defeated, turning to leave"
  one thing mia mingus is gonna do is give their all
• 
  Sarah Martin

  required reading.
• 
  Ann (Inky Labyrinth)

  How amazing it is that I can be in community with fellow disabled people through this book. Alice Wong's books should be required reading.
  
  Thank you to Vintage for sending me a physical and audio copy upon my request!
• 
  Katta

  Highly recommend this anthology and the way it explores different aspects of intimacy and disabilities. All essays are by disabled folks talking about their own experiences and its both grounding n uplifting though it does touch on some heavy topics
• 
  Nancy Nguyen

  “I wanted touch and kindness, a kiss on the forehead and a hard fuck, chosen family who stayed, and I wanted all the pleasures of my solitude.”
  
  A perspective changing raw read. It made check my own ableism, while empathizing with the writers’ journey of life. The mention of the pandemic was necessary. Consider my heart touched.
• 
  Char

  excellent extensive anthology that widened my perception of what being disabled means and the joys within it.
  
  wong did an excellent job finding as many differently identified writers for this piece, and so many different aspects of intersectionality came up in this. for ex, one piece was written by a plural (two or more alters/ identities in one body, overlaps with DID). reading a direct transcription of a plural conversation was incredible! there were also essays from MANY people that were queer/ gender fluid, one author was Samoan and one was poor.
  
  Emotions throughout the pieces ranged from wistful, nostalgic, angry. I had came into this book expecting essays revolving around (my) preconceived notions of love and sex. I was very surprised to find that "intimacy" for disabled people is radical in itself, as our ableist society denies autonomy for them to freely practice what is their intimacy. thus, this anthology more widely spoke on how liberation must come from dismantling our inner ableism.
  
  i highly suggest this book for able-bodied people as not only does it have beautiful writing, poetry, perspectives and photos, but it is incredibly insightful without being academically dense.
  
  favorite pieces (i enjoyed reading parts II-IV much more than part I):
  
  Care During Covid: Photo Essay on Interdependence - Kennedy Healey & Marley Molkentin
  - had amazing photos that conveyed so much on the difference between help vs care during a pandemic for disabled people
  
  
  Poem: doppleganger - Cyree Jarelle Johnson
  - this poem was INSANE. and i dont like poems so this is really saying something.
  
  Profoundly Together - The Redwoods
  - Admittedly I've never consumed any DID representative media that was actually made by a plural. Reading a transcribed conversation especially was incredibly immersive. This essay did an incredible job at dismantling the notions that plurals are dangerous.
  
  Disabled queer love exists - Tee Franklin
  - Franklin adds a "short, raunchy, disabled erotica" in this which I thought was so good and gave great insight on how to acknowledge/ care for your partner with chronic pain
  
  Crip Class - Gabrielle Peters
  - surprisingly, i think this was the only essay that explicitly harped on poverty amongst disabled people. but anyway this essay brought to my attention how canada's MAiD (medical assistance in dying) has been weaponized as eugenics. this was an incredible take that i had not considered before.
  
  Dreaming of Black Disability Doulas - Moya Bailey
  - great commentary on racism within the disabled community (ex. segregation in Blind and Deaf schools)
• 
  danielle

  I don’t generally like absorbing other disabled people’s stories, since I can so often and so easily become convinced that the smallness of my life is entirely because I’m simply not very good at handling adversity. Something of a personal failing, rather than due to physical limitations. That aside, this was a collection of essays I needed, so it felt only right to ramble on about why:
  I have only been in one (long-distance) relationship, which ended over two years ago now. Since then, I have found it incredibly difficult to believe that I will ever enter into another one, for lots of reasons. I suppose that, with the distance, there also came a degree of separation between what it means to coexist with me in theory vs reality, you know? Although my ex has their own experiences of being disabled, these are much less all-encompassing than my own. I find myself wondering how genuinely at ease they would have been, if I had travelled to meet them in-person and been away from the (relative) independence that can be found at my own family home. Would they have cut up my food? Would they have helped me shower, or use the toilet? Would they have helped me get dressed? Maybe they would have, but it’s hard to be sure long-term, especially when doing so could have impacted their ability to accept spontaneous work opportunities and such.
  
  I have heard people say “the right person won’t care” so many times and had actually expected more of the same when I picked up this book. Instead, each essay collectively taught me the most profoundly impactful lesson: the right person should, in fact, care. The goal is not to forget that I’m a wheelchair user when loving me. It is not to love me in spite of. It is to make space for me in every room, even if that means fighting for access. It was also acknowledged that disabled people don’t have the easiest time when it comes to dating, whilst encouraging us to foster other types of intimacies instead. In my own life, this involves small things, such as exchanging long voice messages and texts with probably my closest friend. Quite frankly, the days we’re able to talk are easily my favourite and it’s different from any connection I have had before. Though the vibes are not romantic, it’s still a somewhat sacred space. I leave this book with a newfound appreciation for the important places I’m able to take up in other people’s lives, despite not necessarily contributing to society in more conventional ways. Maybe that will always be my biggest achievement, which I will never entirely be at peace with, but it is so nice to feel validated regardless.
  
  PS: if I had to pick a favourite quote, it would be “…some of us have internalised the ableist gaze so that it is always on us, judging and disciplining us, even when no-one is watching”.
  
  PPS: thank-you to all of the contributors that spoke about sex!!! I would argue that this is the closest I have ever been able to come to being educated on what might be possible, and how not to stress about what “proper” experiences are. I am so grateful (and maybe I’ll read more about disability from now on).
• 
  Kelsey

  Rating: 5/5
  
  This is an excellent follow-up and expansion on the essays included in Disability Visibility. Where Disability Visibility expanded my understanding of disability justice, accessibility, and ableism, Disability Intimacy expanded my understanding of being disabled, living in community with disabled and non-disabled folks, and the many ways we experience intimacy with ourselves and others. I was pleasantly surprised by how many essays featured those with "invisible" disabilities, like ADHD, and how many reflected on the points at which they considered themselves disabled. I've not considered if I have a place within the disability community since my OCD diagnosis, and these essays were compelling and affirming. The essays I know I will take with me, though, were those by disabled parents and caregivers. A parent soothing their toddler to sleep with the sound of their C-Pap, reveling in rest and "laziness," a resource parent/foster parent caring for an infant, providing security and comfort to a new human and adapting infant care for greater accessibility. These essays were such beautiful reflections for this time in my life as a parent of young kids, and I am so grateful for them.
  
  This is a compelling and diverse anthology that allows us to witness and reflect on intimacy in many forms, and whether or not you've read Disability Visibility, I highly recommend it. As a note, the full-cast audio narration was excellent.
• 
  emily

  Will always love anything that Alice Wong writes and/or edits! A wonderful collection of essays. Disability intimacy cannot be easily defined and cannot be easily pinned down as one thing, and I so adore that this collection of essays shows exactly that. The variety in writing, storytelling, photos, and interpretation was beautiful and beautifully curated. I’m feeling tender <3
• 
  Carolyn

  So hard to rate a collection! Some really good essays in this.
• 
  Nicole

  essential reading! disabled love, intimacy, and community come in many different forms and in the details of everyday life. immediately want to follow all the writers
• 
  Beau

  I felt seen, held, and understood in ways I really needed. Thank you to all the people who contributed their essays for this amazing book.
• 
  Merel Nijhuis

  Ongelofelijk belangrijk onderwerp maar de uitvoerig vond ik kwalitatief erg matig; er zaten best wat goede essays tussen maar helaas ook veel stukken die eerder op een anekdote leken dan op een essay. Misschien was dat ook het doel, idk, misschien was dit ook niet helemaal wat ik zocht, maar ik vond de kwaliteit ervan niet voldoende om erin mee te kunnen gaan en de onderwerpen vaak oppervlakkig benaderd door het enkel persoonlijk te benaderen. Ook vond ik het vaak iets te essentialistisch als het ging om identiteit
• 
  Bailey

  Thank you, Vintage Anchor, for providing this book for review consideration via NetGalley. All opinions are my own.
  
  I want to preface this review by saying I fully loved "Disability Visibility," and that book was the reason I requested and was excited for a copy of "Disability Intimacy." However, I did not have the same enjoyment of "Disability Intimacy" as I would have hoped. 
  
  Part of my struggle comes from the sequence the essays are put in, especially Part 1, which felt the most disjointed. Though I say that, I do believe that I enjoyed almost every essay in Part 1. My personal favorite for the entire collection is "Primary Attachment" by Yomi Sachiko Wrong. Which covered so many difficult topics in such little time.
  Part 2: Pleasure and Desire really only focused on the solo experience of pleasure, and I do wish there had been something added about sexual pleasure with a romantic partner as well. An essay that felt close to that was "Know Me Where It Hurts" by Carrie Wade, where the writer describes finding pleasure in her disabled body while with another partner; however, that focuses more on the physical body and not the emotional connection. I think what I was hoping for with Part 2 was more talk about the emotional parts of pleasure.
  Part 3: Creativity and Power gave me the same feeling that "Disability Visibility" did. Which may or may not be a good thing because, in some of these essays, I don't see the "intimacy" connection. I still enjoyed them, but for them to be in a collection about "intimacy," it felt more like they belonged in "Disability Visibility." Even so, I loved this section.
  
  
  Overall, it was a pleasant enough read, and I am glad to have gotten further insight into the lives and feelings of other disabled individuals. This is just not a book I would want to own physically on my shelves or to go back and reread the whole thing. I'm happy to have bookmarked selections, and I love that I can search further into those writers. Would I recommend this collection? It really depends on the person. If you are someone who has already been reading more about disability access, rights, and personal experiences, then I think this would be a good addition to your reading list.
• 
  Riley Murphy

  Rating: 4.25/5 stars
  
  If you are interested in reading more short story or essay collections, there is no better place to start than Alice Wong. Since being introduced to her writing and her work in the Disability Community, I have finished reading all of her books and am currently eagerly awaiting her next release (I tend to check her Instagram profile every week to see if there are any hints at another book she may be working on behind the scenes…. As per all my reviews on memoirs or other more personal writings, I will be focusing on just the writing style and how the book made me feel rather than the substance of the book itself. This book is made up of some truly fascinating experiences of intimacy by a diverse range of those in the Disability Community. There’s pieces from authors who have Dissociative Identity Disorder (DID), are blind or have low vision, and autoimmune disorders. What I loved about Wong’s work is that there is not one essay or entry that reads like the other and there’s not a “one size fits all” for how to be disabled and how to interact with this ableist world we live in. I learned so many new terms and ideologies in this book such a “crip time” and “crip kinship” that I otherwise never would’ve been educated on if not for this book. I hope to become a better advocate and accomplice for those in the Disability Community by educating myself.