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Being Seen: One Deafblind Woman's Fight to End Ableism
A deafblind writer and professor explores how the misrepresentation of disability in books, movies, and TV harms both the disabled community and everyone else.
As a deafblind woman with partial vision in one eye and bilateral hearing aids, Elsa Sjunneson lives at the crossroads of blindness and sight, hearing and deafness—much to the confusion of the world around her. While she cannot see well enough to operate without a guide dog or cane, she can see enough to know when someone is reacting to the visible signs of her blindness and can hear when they’re whispering behind her back. And she certainly knows how wrong our one-size-fits-all definitions of disability can be.
As a media studies professor, she’s also seen the full range of blind and deaf portrayals on film, and here she deconstructs their impact, following common tropes through horror, romance, and everything in between. Part memoir, part cultural criticism, part history of the deafblind experience, Being Seen explores how our cultural concept of disability is more myth than fact, and the damage it does to us all.
As a deafblind woman with partial vision in one eye and bilateral hearing aids, Elsa Sjunneson lives at the crossroads of blindness and sight, hearing and deafness—much to the confusion of the world around her. While she cannot see well enough to operate without a guide dog or cane, she can see enough to know when someone is reacting to the visible signs of her blindness and can hear when they’re whispering behind her back. And she certainly knows how wrong our one-size-fits-all definitions of disability can be.
As a media studies professor, she’s also seen the full range of blind and deaf portrayals on film, and here she deconstructs their impact, following common tropes through horror, romance, and everything in between. Part memoir, part cultural criticism, part history of the deafblind experience, Being Seen explores how our cultural concept of disability is more myth than fact, and the damage it does to us all.
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First published October 26, 2021
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Displaying 1 - 30 of 149 reviews
October 22, 2021
Elsa Sjunneson has crafted a masterpiece with this nonfiction account. It is part memoir, part critical analysis of disability in media, and part historical account of the Deafblind experience.
Elsa discusses her own experience as a Deafblind woman and the experiences that other disabled people have faced and continue to face in a predominantly ableist society. As a media studies professor, she expertly explains the harmful and ableist ways disability is portrayed in films and TV.
Elsa states that she was raised by her queer parents to not think of herself as disabled. It was not until a bit later in life that she began to identify as disabled and as a Deafblind woman.
Elsa discusses everything from what it’s like for disabled people to be denied services to being infantilized and, contrastingly, to being fetishized. She also discusses the intersectionality of being disabled and belonging to other marginalized groups. She describes her life as an activist and the harm that disabled people have experienced from police brutality.
When I started this book, I hoped that the author would discuss the most ableist and offensive movie I have ever seen: Me Before You. And, yes, Elsa delivered. She summed the movie’s message up perfectly: the only good disabled partner is a dead one.
This book handles some serious topics, but humour is also injected throughout. Some parts made me chuckle, others made me angry at the ableism that is so ingrained into our society. Elsa states early on in the book that she did not write this for readers to feel inspired by her achievements, but rather to inspire and create real changes to end ableism.
Thank you to Netgalley, Tiller Press, and Simon & Schuster for this advanced copy in exchange for my honest review.
Elsa discusses her own experience as a Deafblind woman and the experiences that other disabled people have faced and continue to face in a predominantly ableist society. As a media studies professor, she expertly explains the harmful and ableist ways disability is portrayed in films and TV.
Elsa states that she was raised by her queer parents to not think of herself as disabled. It was not until a bit later in life that she began to identify as disabled and as a Deafblind woman.
Elsa discusses everything from what it’s like for disabled people to be denied services to being infantilized and, contrastingly, to being fetishized. She also discusses the intersectionality of being disabled and belonging to other marginalized groups. She describes her life as an activist and the harm that disabled people have experienced from police brutality.
When I started this book, I hoped that the author would discuss the most ableist and offensive movie I have ever seen: Me Before You. And, yes, Elsa delivered. She summed the movie’s message up perfectly: the only good disabled partner is a dead one.
This book handles some serious topics, but humour is also injected throughout. Some parts made me chuckle, others made me angry at the ableism that is so ingrained into our society. Elsa states early on in the book that she did not write this for readers to feel inspired by her achievements, but rather to inspire and create real changes to end ableism.
Thank you to Netgalley, Tiller Press, and Simon & Schuster for this advanced copy in exchange for my honest review.
August 5, 2021
I had mixed feelings that made me wait a while before opening this book. I got the book because I'm familiar with the author through science fiction fandom - I saw her speech accepting a Hugo award and liked her more for it, and she's just delightful on Twitter, a fountain of knowledge and snark.
But this book looked like it might be an inspiring disability story, and I wasn't especially in the mood to be inspired.
I was wrong, though - this is the opposite of that. It's a book about disability activism, about living with disability, about why Inspirational Stories are not just irritating but offensive. It would also be very excerptable for class, and actually might work very well as assigned reading in a high school or college classroom, if you're at a school where parents won't scream too much about the sections which address the fact that disabled people do have sex lives, and sexual trauma, too.
Loved it, would recommend widely.
But this book looked like it might be an inspiring disability story, and I wasn't especially in the mood to be inspired.
I was wrong, though - this is the opposite of that. It's a book about disability activism, about living with disability, about why Inspirational Stories are not just irritating but offensive. It would also be very excerptable for class, and actually might work very well as assigned reading in a high school or college classroom, if you're at a school where parents won't scream too much about the sections which address the fact that disabled people do have sex lives, and sexual trauma, too.
Loved it, would recommend widely.
Read
December 29, 2022in this memoir, elsa sjunneson discusses her experiences as a deafblind woman. this includes how she’s treated by friends, family, romantic partners, and total strangers; how disability is portrayed in media and how that affects the disability community; history regarding the disability community and, more specifically, the deafblind community; and more. i learned a lot from this book about both historical and contemporary impacts ableism has had and continues to have. i listened to the audiobook, which was narrated by the author, and i’d recommend it!
November 14, 2021
Abled people with little to no knowledge of Disability activism and studies are the assumed audience for this book, so as someone who is disabled, has done some reading and coursework in disability studies, and follows the work of disabled people on social media, I didn't get as much out of some of the stuff in this book as others might. I saw a lot of familiar people and works cited and referenced in the book, which was a nice reinforcement, if nothing else.
That said, unlike the author, I am mostly able-bodied (I say "mostly" because my primary disability is mental/psychological, but I wear glasses and have other chronic physical conditions, so it's complicated) and I am not D/deaf, Blind, or Deafblind, so her accounts and insights on living with those specific disabilities were informative for me. In particular, I found her analysis of film and television portrayals of disability enlightening since I'm not really familiar with most of Western/American film and TV and therefore don't have deeper knowledge of all the historical precedents and tropes specific to that medium.
Overall, I think this book is a great starting point for abled people and people outside of academia to learn about the systems that create and sustain the oppression of disabled people. The author provides plenty of concrete examples from her life, the lives of other disabled people, as well as fictional narratives, and uses plain language to explain her points, making her work more accessible to laypeople.
That said, unlike the author, I am mostly able-bodied (I say "mostly" because my primary disability is mental/psychological, but I wear glasses and have other chronic physical conditions, so it's complicated) and I am not D/deaf, Blind, or Deafblind, so her accounts and insights on living with those specific disabilities were informative for me. In particular, I found her analysis of film and television portrayals of disability enlightening since I'm not really familiar with most of Western/American film and TV and therefore don't have deeper knowledge of all the historical precedents and tropes specific to that medium.
Overall, I think this book is a great starting point for abled people and people outside of academia to learn about the systems that create and sustain the oppression of disabled people. The author provides plenty of concrete examples from her life, the lives of other disabled people, as well as fictional narratives, and uses plain language to explain her points, making her work more accessible to laypeople.
November 8, 2021
I am visually impaired and this book really resonated deeply. I listened to it on Audible, read by the author. I have purchased a few copies for some of my family and friends as I think it may foster good discussion. Im going to listen again and reflect more on how I address the disability challenges in my life. A very honest, truthful work.
November 14, 2021
How I read this: Free ebook copy received through Edelweiss
This is definitely a one of a kind book. I fell in love with the author’s voice straight after the first few pages! She’s so cool to listen to (well, read is what I mean, I guess), and despite the differences between our circumstances, I found it super easy to vibe with all she was saying.
I had a lot of thoughts! They're all here, in my long version of the review:
https://avalinahsbooks.space/being-se...
If you don't want to read all my thoughts though, here's the end bit that sums it up.
I’m giving this book 5 stars, because it’s necessary, it needs to be heard and it said things that need to be said, and also because it was snarky, and taught me some things I didn’t know. But it doesn’t mean that I agree to everything 100% – I don’t need to, and that’s not the point (because I am nondisabled). I just need to hear what’s being said and get educated, just as any nondisabled reader.
My bottom line is – if you’re nondisabled, well, it’s quite likely some things in this book will make you uncomfortable! And you know what? It’s meant to do that, and that’s the whole point of you reading it.
You might not agree to some things, you might not want to hear others – but the main idea here is – read it, learn it, mull it over. And next time you see ableism, do something about it. Bring a small positive change to the world.
Read the whole review here:
https://avalinahsbooks.space/being-se...
I thank the publisher for giving me a free copy of the ebook in exchange to my honest review. This has not affected my opinion.
Book Blog | Bookstagram | Bookish Twitter
This is definitely a one of a kind book. I fell in love with the author’s voice straight after the first few pages! She’s so cool to listen to (well, read is what I mean, I guess), and despite the differences between our circumstances, I found it super easy to vibe with all she was saying.
I had a lot of thoughts! They're all here, in my long version of the review:
https://avalinahsbooks.space/being-se...
If you don't want to read all my thoughts though, here's the end bit that sums it up.
I’m giving this book 5 stars, because it’s necessary, it needs to be heard and it said things that need to be said, and also because it was snarky, and taught me some things I didn’t know. But it doesn’t mean that I agree to everything 100% – I don’t need to, and that’s not the point (because I am nondisabled). I just need to hear what’s being said and get educated, just as any nondisabled reader.
My bottom line is – if you’re nondisabled, well, it’s quite likely some things in this book will make you uncomfortable! And you know what? It’s meant to do that, and that’s the whole point of you reading it.
You might not agree to some things, you might not want to hear others – but the main idea here is – read it, learn it, mull it over. And next time you see ableism, do something about it. Bring a small positive change to the world.
Read the whole review here:
https://avalinahsbooks.space/being-se...
I thank the publisher for giving me a free copy of the ebook in exchange to my honest review. This has not affected my opinion.
Book Blog | Bookstagram | Bookish Twitter
July 18, 2021
*REVIEW OF E-ARC* (Thank you Elsa and Tiller Press!)
Gloriously snarky, emotionally resonant, and filled with sword-sharp, justifiable rage, Being Seen is not just a book. It is not just a memoir or a piece of critical analysis.
It is a statement. It is a statement that says I am here, we are here, disabled people are here... and it is high time you acknowledged us as who we truly are, rather than who you'd have us be.
Gloriously snarky, emotionally resonant, and filled with sword-sharp, justifiable rage, Being Seen is not just a book. It is not just a memoir or a piece of critical analysis.
It is a statement. It is a statement that says I am here, we are here, disabled people are here... and it is high time you acknowledged us as who we truly are, rather than who you'd have us be.
July 30, 2023
This extremely effective and important book was recommended to me by a friend who is blind, and I've since been recommending it to everyone I run into. After working with a few blind editing clients, I felt like I knew more than the average abled person about what life is like for blind people in the US, but this book made me realize I had barely scratched the surface. Sjunneson's style is aggressive and uncompromising, and I can totally see why, after reading about the things she's experienced. I was particuarly aghast to learn the mind-blowing and completely horrifying statistic that 83% of disabled women have been sexually assaulted, and about half of the women in that 83% have been assaulted more than ten times. I might not have jived with all of her personal opinions, but Sjunneson tells the hard truths, and I deeply value her perspective. She also does a fantastic job of narrating her own audiobook. 4.5 stars.
August 8, 2024
Really great analysis of disability in popular culture. Splitting the chapters into different genres was a helpful way to get through a bunch of tropes without ever becoming confusing or redundant.
There’s also quite a bit of information about disability in the real world, which I appreciated more when the author brought in her personal experience. Her experiences added character and weight to the media analysis. The general facts not directly related to her personal life or to media were less engrossing for me, but do provide helpful context.
Definitely a worthwhile read
There’s also quite a bit of information about disability in the real world, which I appreciated more when the author brought in her personal experience. Her experiences added character and weight to the media analysis. The general facts not directly related to her personal life or to media were less engrossing for me, but do provide helpful context.
Definitely a worthwhile read
December 15, 2024
My mom got this book as she thought of me when it comes to equality. One of the most ignored forms of discrimination is ableism along with ageism and others. This is a great book by a deafblind woman who identifies as queer. Something I learned about in this book is that capitalism is a contributor of ableism which is why she identifies as a socialist. It is similar to what Malcolm X said that racism cannot exist without capitalism. This is a great reason we should be studying Marxist theory. As a person who is Autistic it is something I have to deal with.
Disability ≠ Ignorance
Disability ≠ Disease
Disability ≠ Broken
Disability ≠ Violence
- More likely to become victims of violence than perpetrators
Science is the key to liberation of all oppressed groups of people
Disability ≠ Ignorance
Disability ≠ Disease
Disability ≠ Broken
Disability ≠ Violence
- More likely to become victims of violence than perpetrators
Science is the key to liberation of all oppressed groups of people
October 26, 2021
Read an eARC from NetGalley
Content warning: ableism, depression, suicidal ideation, medically-assisted suicide, assault (sexual and physical, mentioned), child abuse, spousal abuse, eugenics, Nazis
Elsa Sjunneson is an award-winning writer, professor, and media critic. She is also Deafblind woman with partial vision in one eye and bilateral hearing aids. This memoir takes the reader through her personal history while also seamlessly incorporating critique of popular works featuring disabled characters and dispelling myths about the disabled experience through a combination of lived experience, history, sociology, and pop culture.
Infused with intersectionality, dry humor, and passion for the media critiqued, this is not one to miss.
The structure of this memoir really worked for me. There’s a balance between looking at ableism across several axes, including personally, structurally, entertainment-wise, and more. I do not have a point of reference for several things that Sjunneson brought up throughout, as I’m relatively abled, she explains her reality and experiences with a patience fueled by a desire for change. There are condemnations of specific pieces of media (such as the way Helen Keller is presented to many nondisabled people as the first example), but there is also an invitation to take a walk in Sjunneson’s shoes. And after that, to examine our own ideas and perceptions. The level of detail is outstanding, and there are opportunities upon finishing to delve deeper into the histories, studies, and critiques of everything mentioned.
The footnotes woven throughout are also fantastic. They’re great for both sourcing specific examples, providing context, but also introducing necessary snark and levity. There are parts of this book where Sjunneson discusses her traumas with regards to ableism in general, but also personal anecdotes. Humor here works bother to enhance clarity but also zero in on points made.
Parts are going to make you angry alongside Sjunneson, but there is an invitation to work through ableism both witnessed and internalized. This is a fantastic read from start to finish. I am grateful for the truths and vulnerability that Sjunneson shares with the reader.
Content warning: ableism, depression, suicidal ideation, medically-assisted suicide, assault (sexual and physical, mentioned), child abuse, spousal abuse, eugenics, Nazis
Elsa Sjunneson is an award-winning writer, professor, and media critic. She is also Deafblind woman with partial vision in one eye and bilateral hearing aids. This memoir takes the reader through her personal history while also seamlessly incorporating critique of popular works featuring disabled characters and dispelling myths about the disabled experience through a combination of lived experience, history, sociology, and pop culture.
Infused with intersectionality, dry humor, and passion for the media critiqued, this is not one to miss.
The structure of this memoir really worked for me. There’s a balance between looking at ableism across several axes, including personally, structurally, entertainment-wise, and more. I do not have a point of reference for several things that Sjunneson brought up throughout, as I’m relatively abled, she explains her reality and experiences with a patience fueled by a desire for change. There are condemnations of specific pieces of media (such as the way Helen Keller is presented to many nondisabled people as the first example), but there is also an invitation to take a walk in Sjunneson’s shoes. And after that, to examine our own ideas and perceptions. The level of detail is outstanding, and there are opportunities upon finishing to delve deeper into the histories, studies, and critiques of everything mentioned.
The footnotes woven throughout are also fantastic. They’re great for both sourcing specific examples, providing context, but also introducing necessary snark and levity. There are parts of this book where Sjunneson discusses her traumas with regards to ableism in general, but also personal anecdotes. Humor here works bother to enhance clarity but also zero in on points made.
Parts are going to make you angry alongside Sjunneson, but there is an invitation to work through ableism both witnessed and internalized. This is a fantastic read from start to finish. I am grateful for the truths and vulnerability that Sjunneson shares with the reader.
October 14, 2021
Being Seen is a memoir with elements of cultural criticism and history of the Deafblind community. It’s incredibly personal and intimate; the author doesn’t shy away from writing about having sex, being queer, or taking part in police brutality protests.
As an able-bodied person who tries to read diverse books, I must admit that I have not read much (if anything at all) about the Deafblind experience before. A lot of the subjects that Sjunneson wrote about were new to me, or were things I never really contemplated. She writes about serious topics, but treats them with a lot of humor and doesn’t try to make herself look like a brave hero for “enduring” her disability - quite the contrary, she hates disabled people being treated like inspirations. In one chapter she writes about a boy in her class who wrote an essay about how impressed he was with her spirit, which left Sjunneson mortified. It’s a truly thought-provoking book that taught me a lot, and I was especially curious to read Sjunneson’s thoughts on Hellen Keller and how deaf or blind people are represented in media (Daredevil, Don’t Breathe, etc.). I also loved having the opportunity to read about her experiences with activism and how important intersectionality is in every corner of society.
Overall, Being Seen is an incredibly important book that answers many questions able-bodied people might not even know they have, and I hope it reading it will make us more aware of what we can do to be better allies.
As an able-bodied person who tries to read diverse books, I must admit that I have not read much (if anything at all) about the Deafblind experience before. A lot of the subjects that Sjunneson wrote about were new to me, or were things I never really contemplated. She writes about serious topics, but treats them with a lot of humor and doesn’t try to make herself look like a brave hero for “enduring” her disability - quite the contrary, she hates disabled people being treated like inspirations. In one chapter she writes about a boy in her class who wrote an essay about how impressed he was with her spirit, which left Sjunneson mortified. It’s a truly thought-provoking book that taught me a lot, and I was especially curious to read Sjunneson’s thoughts on Hellen Keller and how deaf or blind people are represented in media (Daredevil, Don’t Breathe, etc.). I also loved having the opportunity to read about her experiences with activism and how important intersectionality is in every corner of society.
Overall, Being Seen is an incredibly important book that answers many questions able-bodied people might not even know they have, and I hope it reading it will make us more aware of what we can do to be better allies.
November 11, 2022
My thanks to libro.fm and Simon and Schuster Audio for an advanced Audio book to listen to and review.
Read this for the insight into the life and thoughts of a DeafBlind woman. She is a Socialist and that does come through.
Just because someone is disabled doesn't mean they aren't human. It doesn't mean that they won't be a jerk, or get on your nerves or don't have the less than positive parts of being a human, just like those without disabilities.
Very good book and narrated very well by the author. I don't quite agree with some of what she says/does re: protests and the police. Also, she seems to think that women without disabilities don't have the same exact thoughts, concerns and hang-ups as those with disabilities. We have different things we see as negatives, but we still have them and worry about them. Just a slightly different scope.
3 solid stars.
Read this for the insight into the life and thoughts of a DeafBlind woman. She is a Socialist and that does come through.
Just because someone is disabled doesn't mean they aren't human. It doesn't mean that they won't be a jerk, or get on your nerves or don't have the less than positive parts of being a human, just like those without disabilities.
Very good book and narrated very well by the author. I don't quite agree with some of what she says/does re: protests and the police. Also, she seems to think that women without disabilities don't have the same exact thoughts, concerns and hang-ups as those with disabilities. We have different things we see as negatives, but we still have them and worry about them. Just a slightly different scope.
3 solid stars.
This entire review has been hidden because of spoilers.
November 4, 2021
I just finished reading Being Seen: Once DeafBlind Woman’s Fight to End Ableism. I highly recommend. I believe this book should be read by every person who knows and has relationships with disabled people (that’s everybody). Elsa has always been an amazing storyteller, but this explains and reflects n so many aspects of ableism and being disabled in our society. I will definitely be giving it out to people, and I kind of want to immediately read it again.
September 1, 2021
Intimate and wonderfully sarcastic exploration of one person's experiences and explorations of disability in an abled society with thoughtful unearthing into our ideas of heroic figures, disabled tropes and the way disabled bodies in our media influence the lived experiences of disabled people.
June 7, 2022
This is a combination memoir, call to activism, and critique of horror and SFF tropes regarding the disabled. The author is what she calls Deafblind--she wears hearing aids and has no sight in one eye and limited vision in the other--and this book was written to impress on nondisabled people the challenges the disabled face in a society that mostly refuses to accommodate them. This book is not long, but it has some very pointed and sometimes horrific remarks about those challenges, especially in a country like America where the spectre of eugenics still hangs in the air like a sulfurous miasma.
It's often uncomfortable, but it's meant to be, and the least we nondisabled readers can do is accept the discomfort and think about the ways we can do better. The author has done a fine job in pointing out those various ways, and I thank her for it.
It's often uncomfortable, but it's meant to be, and the least we nondisabled readers can do is accept the discomfort and think about the ways we can do better. The author has done a fine job in pointing out those various ways, and I thank her for it.
July 25, 2022
Excellent. If you've already read Disfigured: On Fairy Tales, Disability, and Making Space (which is mentioned in this book) this is a great follow-up. Instead of focusing on fairytales, this author covers a wide range of tv shows, movies and books. She brings up a lot of instances in her own life where she was treated differently because of her disability in ways that I never would have thought of. Informative and entertaining.
January 23, 2023
This book was chosen by the Henry Ford Hospital Healthcare Equity Book Club. The author, Elsa Sjunneson, is a powerful advocate. She brings up disability as a social construction reinforced by able-bodied individuals through mainstream media. As an “able-bodied” individual, this book made me uncomfortable, at times defensive, and more aware of my part in promoting “ableism”. Although, I don't fully agree with her recommendations for change, the book is clearly written and effective in its message -> we live in a society that aims to “fix disability” but not learn to adapt or allow those with disability to function freely.
July 27, 2022
I listened to this book as part of my research for blind and visually impaired characters in my books, but I got more out of it than I could have imagined. I recommend this to anyone trying to broaden their understanding of the world, and their understanding of what it means to be deaf, blind, or both.
December 21, 2021
Due to my internalized ableism, possibly one of the hardest books I’ve read so far.
May 24, 2024
Giving it four stars for what I learned.
November 12, 2024
Ableism isn’t a word I can recall hearing until somewhat recently, like, post-lockdown recently, but it is a topic I’m keen to pursue further.
February 12, 2025
I struggled with the organization and flow of the writing, but Sjunneson’s experiences and commentary on our ableist society was important and insightful.
June 25, 2023
'Being Seen: One Deafblind Woman's Fight to End Ableism' was incredible to listen to as an audiobook, and was narrated by the author herself. She notes in the very beginning, however, that there are subtle differences between her narration and the text itself (lowercase 'd' for deaf, and uppercase 'D' for deaf, in order to signify subtle differences in attitudes towards deaf people). I did not feel as if this impacted the audiobook in any capacity, however. Sjunneson speaks with such passion and emotion, and it reminded me of instances where I have witnessed ableism in my own life. Sjunneson makes an important statement in her title, in the beginning of her memoir, and at the very end; that her primary objective is to fight her hardest to combat ableism in her every day life, and to encourage the reader, deafblind or not, to take action to combat ableism. This memoir has taught me a lot about ableism and the existence and experience of deafblind people, and the differences in impact upon deafblind people dependent on their (binary) gender. There is much change that has to be done within literature, the education system, police, TV shows and films, the ways in which people with disabilities are depicted, and, more broadly, society.
August 8, 2023
I wish I had read this book earlier. I didn't realise how much I would learn - and how much I needed to, and still need to. There is still much in this book that I don't understand, that confuses me. I think if I read the text I wrote in the following again later, I will likely find it still very ignorant, because I will have learned more. But I want to learn more, and I think not hiding ignorance will help there.
I'm hearing and seeing, and while I have interacted with blind or hard of hearing people at work and at kink parties who were cool people leading cool lives, I admit my first reaction to trying to imagine being deafblind, both at once, was horror. It sounded like one of the worst things that could happen to someone, something impossible to live with. Something I did not want to read about. I was still very torn whether I wanted to continue the book after the sample. But I am glad that I did.
As the book went along, at first, I was baffled to realise that while this condition inherently comes with severe challenges, which of course the author is very aware of, the disabled community has, over and over, discovered solutions, new ways of being, connecting, moving, perceiving, each individual anew developing brilliant and individual solutions even in isolation with nothing but their own wits (I had no idea Helen Keller had already developed 60 home signs prior to being visited by Anne Sullivan!). But this goes from being inspiring, to being angering. Why does each one need to figure it out alone? Reinvent the wheel? Imagine having to make up language from scratch yourself. Figuring out how to use your hands well, yourself, with noone helping. That still working to a degree becomes bittersweet. It should not be that hard. Just taking part in society should not be so hard that it is an achievement to manage anyway. They shouldn't have to defy the odds, why are they stacked against them like that?
I realised that the community as a whole, if you connect them to each other, joining power and creativity, is developing a whole new language together (Protactile with its ways of relating and its tangible metaphor sounds amazing, like something that changes your whole way of thinking and connecting https://www.newyorker.com/culture/ann... ). This book for me was a starting point to online research, and to the realisation that there is a whole culture here, one that is not just a faded copy of the culture I have, but vibrant, evolving, stunning, something inspiring in the true sense; not as something you say of someone who copies you badly, but to someone who does their own, useful, beautiful thing. I had not realised that ASL has its own grammar (and visual metaphors so accurate that they make you laugh or weep), that braille does not correspond to just seeing alphabet letters, that protactile inherently integrates copresence and collaboration and active listening in a way I wish verbal language had - it would change the way we relate to each other. That there is this entire culture amongst us, and we aren't recognising its beauty and potential because we are falsely dismissing it as an attempt to compensate for not speaking our language, rather than a new language. Expecting disabled people to speak, write and read our language, no matter how in accessible it is, while never bothering with theirs in turn.
Why aren't ASL and braille offered in public schools? In todays world of AI, with translation built into our webbrowsers and spellchecks and grammar checks into every writing software, they would be more useful in practice to ablebodied folks than learning to read and write Latin or French, and learning them early would make it much easier, be neat for neuroplasticity, and help with inclusion besides; even if most people would not become fluent, being able to offer help, establish basics in an emergency and for polite interaction, and appreciate the skill in a disabled person would already go far, and some people would discover a talent and love for it and learn it properly. And having disabled folks grow up and not know them is just broken beyond belief. How the heck aren't their hearing aids and glasses and canes and wheelchairs fully paid by insurance?
And then realised, with increasing confusion, and then rage, that the difference between these people
living an awesome, fulfilled, empowered life of happiness and respect and love enriching the community, and one where they commit suicide or are killed, is not the state of their eyes and ears, but the society around them. That being deafblind does not mean being unemployed, or without love, at all, but being deafblind in our society often does. That our society treats them like trash, literally, sending them down the trash ramp. Tries to "fix" them via invasive and dangerous means, whether they want to or not, with the fixes not aimed at what they desire and what works for them, but at making them easier to handle - rather than create a more inclusive world. That our society totally disregards their right to bodily autonomy. That eugenics didn't stop with the nazis, but still strikes, not just from the shadows, but in our midst. That our society does not understand alternatives to either segregating disabled children to a degree where abled children are frightened of them and clueless around them, while the disabled children are painfully isolated and deprived of quality education - or of forcing them into an ablebodied culture that pretends they don't exist, depriving them of the disabled culture that evolved for them, forcing them to instead speak, write and read according to norms they would never chose, that limit their eloquence, understanding and connection, denying them things they patently need, and subjecting them to things that are plainly cruel, in the name of a bizarre idea of fairness. Why can we not think of a way where people are connected and included despite their differences, but not at the cost of pretending they are all the same, forcing everyone to do the same thing, whether it makes them bored out of their minds, or overwhelmed to the point of crying? Trying to turn people who are unique into people who are all the same, and judging all those for whom this just cannot work, rather than seeing what is being dismissed and destroyed and limited.
That we live in a society that doesn't ask, what incredible things can they do, and what do they want to do, things that are needed and awesome? But asks if they fit into a standard mould, and fails them if they don't, excluding them from work and study. That makes every human do and show the exact same tricks, regardless of whether these are necessary, while ignoring their unique talents that could shine more if allowed to develop. I remember seeing an article on a deafblind woman training to be a doctor, and at the time thinking, that is crazy, there are so many things I can think of that I have seen doctors do that she can't. And now, I no longer do.
I didn't realise that disabled people were such a diversity. That I can't tell what any single one can do until I ask them, as this particular human. That I can't expect them to do a particular thing, because I don't know their challenges; but can also not declare what they cannot do, because again, I do not know them, their remaining sight/hearing, their workarounds, their other abilities. I didn't know how differently blindness could manifest. I had no idea what aids and creativity made possible.
But I am also questioning - why does every doctor need to be able to do the same thing, in a hospital filled with them, that is desperately looking for personnel? I am sure there are some things a deafblind doctor cannot do (though much fewer than I expected - I did not know a stethoscope can link directly to an audio aid, or that you can take blood and give injections by touch). But also things that she can do that abled people cannot that disabled people can - or that the specific abled people there cannot that this particular disabled person can. I think of deaf or blind people coming in, and being with a doctor who understands and can communicate with them. I think of all the times doctors rely on sight alone, when touch would be better. Of people of colour whose conditions are misdiagnosed and whose needles are misplaced because their skin is not translucent, while the feel would be the same. I think of the many times in hospital when all I wanted was for someone to understand the reality of chronic pain, and strange auto-immune conditions that develop unpredictably, and how I would have wanted a doctor who got this, who saw this part of my experience even if she cannot see what I look like. And thinking... yes, that deafblind doctor can't run the hospital alone, but the hospital would be better with her in it. So let her train, give her the aids and accommodations she needs, and hire her, it will be better for everyone. We are missing out on what disabled people have to contribute. But in the process, we are also pushing them out of a world, out of independence and respect and inclusion that they deserve.
The parts on abuse were very hard to read. I knew that disabled people are abused, sexually and physically, and more often than abled people. I did not realise it was this bad. There were statistics I had to reread, because I thought I must have, must have, misread, that this just couldn't be true. I did not realise how many of them are murdered, today. It is unbelievable, awful, enraging, it mustn't stay like this, it mustn't. There were parts on emotional abuse that painfully resonated with my own experiences, and I could not imagine how much worse they must be if steeped in a self-confidence destroyed by ableism. There is a lot of this that I cannot imagine, but what little I can has me weep and shudder. This has to change. It has to. Dear God. This is so beyond okay that I lack the words.
It also changed my perspective on my own conditions, on the term disabled, and on aids. I have severe chronic pain that massively interferes with my life. And I have resisted both the label disabled, and the use of aids, because I felt doing so would be to admit failure. I've tried to hide my condition, to shoulder through alone, and it broke me, and confused everyone else, because it is real and omnipresent whether I acknowledge it or not, and people couldn't understand why I could not do things, was in such a bad temper, simply doing so badly. I felt I had no right to ask for a different chair, or for permission to stand up, because sitting on a bad chair too long makes my spine slide apart.
This book made me realise that by claiming disability, I would be acknowledging being a part of a community that is honestly amazing. That aids aren't a sign of failure - they are a way to independence and freedom, to new abilities. That asking for small accommodations that allow me to be a better worker, a better partner, a better activist, and that I frankly need, isn't selfish. That being different isn't being terrible. I didn't realise that a cane does not just identify objects, but develops a sensitivity that allows you to feel ice. I didn't realise that hearing aids can be connected to a music playing laptop. That aids are the wonderful part of SciFi that amplifies humans, we just don't recognise them as such without the cyberpunk image. That there are leg prostheses that allow you to run faster than typical human legs. And others that are gorgeous pieces of art. That hearing aids can be colour coordinated with your fashion. That scars from the removal of sickened body parts can be turned into beautiful flower tattoos. That you don't need to have a completely severed spinal cord to be allowed to use a wheelchair, if having one would allow you to access things you need to access and that are causing you excruciating pain and damage to access otherwise. That the person standing up in the wheelchair can only stand up so many times a day, so they do need and deserve the damn thing. That it isn't a damn thing at all, but a thing that carries you to new places, supports you so you can discover art, travel, get your own stuff yourself. That aids are freedom, independence, creative solutions, extensions of you, empowering.
It left me convinced that I want to advocate for other people to be included. That I need to have their back, because they are getting stabbed in it. And that I want to try to advocate for myself, too. It has me seeing the missing ramps, the broken elevators, the missing braille, the unmarked steps and drops, the missing subtitles, the chaotic website design screenreaders cannot handle. Deciding that I will make my own blog accessible rather than pretty. Arguing with my employer over new building and work arrangements that will otherwise screw over disabled people. Recognising an alliance of people, each different, where we can support each other, take each others needs seriously, and speak up for each other so we aren't always alone.
And it changed my perspective on the scifi and fantasy I read, and have considered writing, the utopias I want to imagine. Instead of being free of disability, they are now filled with inclusion and diversity. I can't believe I never noticed how filled stories are with characters in which disability equals evil, how stupid all the tropes on blind people are. I want stories where disability can mean anything, where it is magical. Stories where the graceful, beautiful mermaid does not magically obtain legs and lungs to become like ablebodied humans, nor does she want to - but she does manage to obtain an oxygen device and a wheelchair and cream for her drying skin and learn ASL, and to hence be with humans and have a voice. Where her fish tail will never walk, but is still beautiful and precious - and soon whizzing through the streets on wheels, regardless. Where her gorgeous underwater voice cannot be expressed into air through her mouth, but she manages to paint her story in the air with her hands. Where as a non-mammal, her upper body never fits the binary, but is outside it from the start, and stunning and natural, all the same. The Sea in You already explored some of these ideas gorgeously, and I feel the imagery could be expanded in that way and reframe aids, and the pressure on disabled people to conform because society is not built for their bodies, to show that they need support - but are worthy just as they are.
I am really grateful and glad that the author wrote this book. It was seriously needed.
I apologise for anything in my text that is still ignorant. This was a lot to take in, and I am clearly not done learning. Where I am currently at is not the author's fault, she made it better.
I'm hearing and seeing, and while I have interacted with blind or hard of hearing people at work and at kink parties who were cool people leading cool lives, I admit my first reaction to trying to imagine being deafblind, both at once, was horror. It sounded like one of the worst things that could happen to someone, something impossible to live with. Something I did not want to read about. I was still very torn whether I wanted to continue the book after the sample. But I am glad that I did.
As the book went along, at first, I was baffled to realise that while this condition inherently comes with severe challenges, which of course the author is very aware of, the disabled community has, over and over, discovered solutions, new ways of being, connecting, moving, perceiving, each individual anew developing brilliant and individual solutions even in isolation with nothing but their own wits (I had no idea Helen Keller had already developed 60 home signs prior to being visited by Anne Sullivan!). But this goes from being inspiring, to being angering. Why does each one need to figure it out alone? Reinvent the wheel? Imagine having to make up language from scratch yourself. Figuring out how to use your hands well, yourself, with noone helping. That still working to a degree becomes bittersweet. It should not be that hard. Just taking part in society should not be so hard that it is an achievement to manage anyway. They shouldn't have to defy the odds, why are they stacked against them like that?
I realised that the community as a whole, if you connect them to each other, joining power and creativity, is developing a whole new language together (Protactile with its ways of relating and its tangible metaphor sounds amazing, like something that changes your whole way of thinking and connecting https://www.newyorker.com/culture/ann... ). This book for me was a starting point to online research, and to the realisation that there is a whole culture here, one that is not just a faded copy of the culture I have, but vibrant, evolving, stunning, something inspiring in the true sense; not as something you say of someone who copies you badly, but to someone who does their own, useful, beautiful thing. I had not realised that ASL has its own grammar (and visual metaphors so accurate that they make you laugh or weep), that braille does not correspond to just seeing alphabet letters, that protactile inherently integrates copresence and collaboration and active listening in a way I wish verbal language had - it would change the way we relate to each other. That there is this entire culture amongst us, and we aren't recognising its beauty and potential because we are falsely dismissing it as an attempt to compensate for not speaking our language, rather than a new language. Expecting disabled people to speak, write and read our language, no matter how in accessible it is, while never bothering with theirs in turn.
Why aren't ASL and braille offered in public schools? In todays world of AI, with translation built into our webbrowsers and spellchecks and grammar checks into every writing software, they would be more useful in practice to ablebodied folks than learning to read and write Latin or French, and learning them early would make it much easier, be neat for neuroplasticity, and help with inclusion besides; even if most people would not become fluent, being able to offer help, establish basics in an emergency and for polite interaction, and appreciate the skill in a disabled person would already go far, and some people would discover a talent and love for it and learn it properly. And having disabled folks grow up and not know them is just broken beyond belief. How the heck aren't their hearing aids and glasses and canes and wheelchairs fully paid by insurance?
And then realised, with increasing confusion, and then rage, that the difference between these people
living an awesome, fulfilled, empowered life of happiness and respect and love enriching the community, and one where they commit suicide or are killed, is not the state of their eyes and ears, but the society around them. That being deafblind does not mean being unemployed, or without love, at all, but being deafblind in our society often does. That our society treats them like trash, literally, sending them down the trash ramp. Tries to "fix" them via invasive and dangerous means, whether they want to or not, with the fixes not aimed at what they desire and what works for them, but at making them easier to handle - rather than create a more inclusive world. That our society totally disregards their right to bodily autonomy. That eugenics didn't stop with the nazis, but still strikes, not just from the shadows, but in our midst. That our society does not understand alternatives to either segregating disabled children to a degree where abled children are frightened of them and clueless around them, while the disabled children are painfully isolated and deprived of quality education - or of forcing them into an ablebodied culture that pretends they don't exist, depriving them of the disabled culture that evolved for them, forcing them to instead speak, write and read according to norms they would never chose, that limit their eloquence, understanding and connection, denying them things they patently need, and subjecting them to things that are plainly cruel, in the name of a bizarre idea of fairness. Why can we not think of a way where people are connected and included despite their differences, but not at the cost of pretending they are all the same, forcing everyone to do the same thing, whether it makes them bored out of their minds, or overwhelmed to the point of crying? Trying to turn people who are unique into people who are all the same, and judging all those for whom this just cannot work, rather than seeing what is being dismissed and destroyed and limited.
That we live in a society that doesn't ask, what incredible things can they do, and what do they want to do, things that are needed and awesome? But asks if they fit into a standard mould, and fails them if they don't, excluding them from work and study. That makes every human do and show the exact same tricks, regardless of whether these are necessary, while ignoring their unique talents that could shine more if allowed to develop. I remember seeing an article on a deafblind woman training to be a doctor, and at the time thinking, that is crazy, there are so many things I can think of that I have seen doctors do that she can't. And now, I no longer do.
I didn't realise that disabled people were such a diversity. That I can't tell what any single one can do until I ask them, as this particular human. That I can't expect them to do a particular thing, because I don't know their challenges; but can also not declare what they cannot do, because again, I do not know them, their remaining sight/hearing, their workarounds, their other abilities. I didn't know how differently blindness could manifest. I had no idea what aids and creativity made possible.
But I am also questioning - why does every doctor need to be able to do the same thing, in a hospital filled with them, that is desperately looking for personnel? I am sure there are some things a deafblind doctor cannot do (though much fewer than I expected - I did not know a stethoscope can link directly to an audio aid, or that you can take blood and give injections by touch). But also things that she can do that abled people cannot that disabled people can - or that the specific abled people there cannot that this particular disabled person can. I think of deaf or blind people coming in, and being with a doctor who understands and can communicate with them. I think of all the times doctors rely on sight alone, when touch would be better. Of people of colour whose conditions are misdiagnosed and whose needles are misplaced because their skin is not translucent, while the feel would be the same. I think of the many times in hospital when all I wanted was for someone to understand the reality of chronic pain, and strange auto-immune conditions that develop unpredictably, and how I would have wanted a doctor who got this, who saw this part of my experience even if she cannot see what I look like. And thinking... yes, that deafblind doctor can't run the hospital alone, but the hospital would be better with her in it. So let her train, give her the aids and accommodations she needs, and hire her, it will be better for everyone. We are missing out on what disabled people have to contribute. But in the process, we are also pushing them out of a world, out of independence and respect and inclusion that they deserve.
The parts on abuse were very hard to read. I knew that disabled people are abused, sexually and physically, and more often than abled people. I did not realise it was this bad. There were statistics I had to reread, because I thought I must have, must have, misread, that this just couldn't be true. I did not realise how many of them are murdered, today. It is unbelievable, awful, enraging, it mustn't stay like this, it mustn't. There were parts on emotional abuse that painfully resonated with my own experiences, and I could not imagine how much worse they must be if steeped in a self-confidence destroyed by ableism. There is a lot of this that I cannot imagine, but what little I can has me weep and shudder. This has to change. It has to. Dear God. This is so beyond okay that I lack the words.
It also changed my perspective on my own conditions, on the term disabled, and on aids. I have severe chronic pain that massively interferes with my life. And I have resisted both the label disabled, and the use of aids, because I felt doing so would be to admit failure. I've tried to hide my condition, to shoulder through alone, and it broke me, and confused everyone else, because it is real and omnipresent whether I acknowledge it or not, and people couldn't understand why I could not do things, was in such a bad temper, simply doing so badly. I felt I had no right to ask for a different chair, or for permission to stand up, because sitting on a bad chair too long makes my spine slide apart.
This book made me realise that by claiming disability, I would be acknowledging being a part of a community that is honestly amazing. That aids aren't a sign of failure - they are a way to independence and freedom, to new abilities. That asking for small accommodations that allow me to be a better worker, a better partner, a better activist, and that I frankly need, isn't selfish. That being different isn't being terrible. I didn't realise that a cane does not just identify objects, but develops a sensitivity that allows you to feel ice. I didn't realise that hearing aids can be connected to a music playing laptop. That aids are the wonderful part of SciFi that amplifies humans, we just don't recognise them as such without the cyberpunk image. That there are leg prostheses that allow you to run faster than typical human legs. And others that are gorgeous pieces of art. That hearing aids can be colour coordinated with your fashion. That scars from the removal of sickened body parts can be turned into beautiful flower tattoos. That you don't need to have a completely severed spinal cord to be allowed to use a wheelchair, if having one would allow you to access things you need to access and that are causing you excruciating pain and damage to access otherwise. That the person standing up in the wheelchair can only stand up so many times a day, so they do need and deserve the damn thing. That it isn't a damn thing at all, but a thing that carries you to new places, supports you so you can discover art, travel, get your own stuff yourself. That aids are freedom, independence, creative solutions, extensions of you, empowering.
It left me convinced that I want to advocate for other people to be included. That I need to have their back, because they are getting stabbed in it. And that I want to try to advocate for myself, too. It has me seeing the missing ramps, the broken elevators, the missing braille, the unmarked steps and drops, the missing subtitles, the chaotic website design screenreaders cannot handle. Deciding that I will make my own blog accessible rather than pretty. Arguing with my employer over new building and work arrangements that will otherwise screw over disabled people. Recognising an alliance of people, each different, where we can support each other, take each others needs seriously, and speak up for each other so we aren't always alone.
And it changed my perspective on the scifi and fantasy I read, and have considered writing, the utopias I want to imagine. Instead of being free of disability, they are now filled with inclusion and diversity. I can't believe I never noticed how filled stories are with characters in which disability equals evil, how stupid all the tropes on blind people are. I want stories where disability can mean anything, where it is magical. Stories where the graceful, beautiful mermaid does not magically obtain legs and lungs to become like ablebodied humans, nor does she want to - but she does manage to obtain an oxygen device and a wheelchair and cream for her drying skin and learn ASL, and to hence be with humans and have a voice. Where her fish tail will never walk, but is still beautiful and precious - and soon whizzing through the streets on wheels, regardless. Where her gorgeous underwater voice cannot be expressed into air through her mouth, but she manages to paint her story in the air with her hands. Where as a non-mammal, her upper body never fits the binary, but is outside it from the start, and stunning and natural, all the same. The Sea in You already explored some of these ideas gorgeously, and I feel the imagery could be expanded in that way and reframe aids, and the pressure on disabled people to conform because society is not built for their bodies, to show that they need support - but are worthy just as they are.
I am really grateful and glad that the author wrote this book. It was seriously needed.
I apologise for anything in my text that is still ignorant. This was a lot to take in, and I am clearly not done learning. Where I am currently at is not the author's fault, she made it better.
December 17, 2021
My actual rating for this is closer to a 3.5 I think, but since Goodreads doesn't do half stars, 4 felt more fair.
I can't really articulate my thoughts yet. I'll come back to this. I did like the book, and think it's a valuable contribution to disabled literature by disabled writers, I just had some mixed feelings about the way personal opinions were sometimes attributed to an entire group. I'm only blind, not deafblind, so I can't speak to how well that was portrayed, but as a disabled queer woman in the world, I saw myself in parts of the book and didn't in others, and that's fine. Our stories are all individual.
I can't really articulate my thoughts yet. I'll come back to this. I did like the book, and think it's a valuable contribution to disabled literature by disabled writers, I just had some mixed feelings about the way personal opinions were sometimes attributed to an entire group. I'm only blind, not deafblind, so I can't speak to how well that was portrayed, but as a disabled queer woman in the world, I saw myself in parts of the book and didn't in others, and that's fine. Our stories are all individual.
October 17, 2024
⭐️ 3.5
November 23, 2022
This is a highly important book, especially for abled people to learn more about the challenges that disabled people face. It helped me to understand some of the unconscious biases I have against disabled people, and some of the ways that we need to change society to be more equal for the disabled. I encourage everyone to read this book with an open mind.
August 10, 2022
This should absolutely be required reading for any non disabled writers or reviewers. Sjunneson not only gives personal accounts and criticism of some commonly lauded (but actually problematic) disabled representation, but she also walks the reader through some of the most prominent and overused disabled tropes in fictional media. This is a great starting place for people looking to learn more about the dos and don’ts of disabled representation.
December 30, 2022
I enjoyed hearing about the author’s perspective with living with a disability. She goes into detail about being compared to Helen Keller and what people think disability should look like. I didn’t realize how much people can put the word “disabled” in a box and try to make sure it looks the same for every disabled person, which it doesn’t at all.
I liked the first few chapters of this book, but the latter half of the book felt pretty political and I didn’t agree with it so that ruined it for me.
It was also interesting to hear her perspective on how people with disabilities are represented in films and shows. I think a large variety of people gain their perspective of what people with disabilities are like from media but it doesn’t always accurately represent people with disabilities and their capabilities.
Overall, this book made me want to find more books that candidly discuss disabled people’s perspectives and livelihood.
I liked the first few chapters of this book, but the latter half of the book felt pretty political and I didn’t agree with it so that ruined it for me.
It was also interesting to hear her perspective on how people with disabilities are represented in films and shows. I think a large variety of people gain their perspective of what people with disabilities are like from media but it doesn’t always accurately represent people with disabilities and their capabilities.
Overall, this book made me want to find more books that candidly discuss disabled people’s perspectives and livelihood.
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