How we talk about disability

Note: Originally posted on https://jenrohrigdesign.com/

The way we talk about disability matters but the complicating factor is that different people and different groups have different preferences. People with intellectual disabilities tend to prefer person first language and the concept of “see ability not disability”. This is because of the long history of being dismissed and looked down on by everyone including those with physical disabilities. If you’ve ever used the phrase “I may have a physical disability but my brain is fine” you’ve contributed to. On the flip side people with physical disabilities and some developmental disabilities (like autism) tend to prefer identity first language and usually (but not always) don’t find the use of the word disabled offensive. Some don’t like to use the word disabled but instead prefer to only use the name of their identity – Deaf or Autistic for example. None of this is 100% true all of the time but in general it’s a good baseline to understand.

When we talk about accommodating disabilities there is often a focus on the deficits that the accommodations are helping with. This individual can’t hear so they need closed captions or ASL interpreters; this individual can’t walk to they need a wheelchair; and so on. This is especially true in education settings for children who have IEPs. Because of the way school systems focus on their budgets they tend to focus on how much something will cost. This results in parents having to fight to get the accommodations their child needs by emphasizing their disabilities in order to prove that the need exists, instead of being able to focus on how the accommodations would help them succeed in school. This battle often repeats each year because school administrations will want to take away accommodations if they see an improvement. The argument the school will use is that the child has improved so the accommodation obviously isn’t needed anymore, ignoring that the child is doing better with the accommodations and taking them away would mean not doing as well.

Because there is such an emphasis on deficits in education there ends up being a push for “seeing abilities not disabilities”. It becomes especially true for people with intellectual and developmental disabilities as they fall behind their peers in school. Sometimes this is the case before they even start school when doctors tell parents that their children won’t amount to much because of their disabilities. So naturally organizations like Special Olympics will focus on proving what people with intellectual disabilities are capable of doing rather than what they can’t. Special Olympics is of course focused on sports so there is an emphasis that sports don’t see disability. There’s nothing really wrong with this thinking in a general sense. It is important to see that a person can be capable of things and not make assumptions based on their disabilities. That’s why people act so amazed when a person with Down Syndrome completes a Marathon. There’s an assumption that they can’t possibly run a marathon, when the truth is they often can with enough training and enough support just like anyone else.

Of course limitations will always exist (even without disabilities in the mix). The key is not allowing other people to enforce false limitations on a person, but also acknowledging the real limitations that exist. Because, ignoring a disability completely will cause harm if not acknowledged. It’s also a problem when people say “if this person with a disability can do this why can’t you?” ignoring that everyone’s abilities actually are different. That’s why my preference is to see the disability along with the ability. I’m still hard of hearing regardless of having a hearing aid. My hearing is not 100% – there will still be times I don’t hear something and people will need to repeat themselves. I also still need closed captions to watch videos or TV shows – the sound is not clear enough to hear everything and there is usually background noise. So yes I still need people to “see my disability, not just my abilities”. But I do think we can change how we talk about our disabilities so that it’s not always about the deficit. Just saying I need people to repeat themselves or captions should be enough without having to explain that I am hard of hearing. There shouldn’t be a reason to have to prove anything. Access needs should be understood and accepted across the board.

Additional Reading

“I Shouldn’t Have to Dehumanize My Son to Get Him Support: Instead of focusing on the challenges facing disabled people, we should emphasize goals.” – by David M Perry at “The Nation”

“The Problem of Intellectual Ableism” posted by me on this blog.

“About Limits” posted by me on this blog.

“Elatsoe” Updated Review

“Elatsoe” by Darcie Little Badger

Imagine an America very similar to our own. It’s got homework, best friends, and pistachio ice cream.

There are some differences. This America been shaped dramatically by the magic, monsters, knowledge, and legends of its peoples, those Indigenous and those not. Some of these forces are charmingly everyday, like the ability to make an orb of light appear or travel across the world through rings of fungi. But other forces are less charming and should never see the light of day.

Elatsoe lives in this slightly stranger America. She can raise the ghosts of dead animals, a skill passed down through generations of her Lipan Apache family. Her beloved cousin has just been murdered, in a town that wants no prying eyes. But she is going to do more than pry. The picture-perfect facade of Willowbee masks gruesome secrets, and she will rely on her wits, skills, and friends to tear off the mask and protect her family.

Review

When I read this last year I wasn’t in the best mood about books that had kids saving the world while adults are useless. I also must not have been as open to urban fantasy as I should have been, which resulted in an unfair review at the time. I decided to re-read it after reading “Sheine Lende” which is a prequel to “Elatsoe”.

I really enjoyed reading the book for the second time. The characters are great. And I do think the adults around Elatsoe are great too even though she does all the investigative work with her friend and solves the case. Her parents are very supportive of her gifts and how she uses them. I think I also failed to realize she’s actually seventeen the first time I read the book, so actually closer to being an adult than a child. For some reason I thought she as younger the first time around.

The setting is really interesting and the word building made more sense this time. I think in some places the details could have been explained a little more but there’s also a sense that things are secret as part of the cultures involved. There are a couple places where Elatsoe was thinking of her Sixth-Great Grandmother and the scene shifts right into a story about her. I think those instances could have been separated a little more. Especially in once case there is something serious happening to Elatsoe and story switches POV before returning to solving the initial situation Elatsoe is in.

It’s still a bit annoying that Elatsoe does almost all the work to solve everything. Her mother has the same gifts she does but can’t use them as well for some reason. I don’t know if that was explained or not? I might have missed that explanation like I missed why her father suddenly disappears after driving her to her cousins house. There’s actually a line in the book about how he needs to go back to work, but that wasn’t entirely clear after all his talk of believing her and wanting to help her find out what had happened. None of this impacts my overall feelings of enjoying the book and I’m glad I read it again.

Warnings and additional reviews are available on the StoryGraph page for “Elatsoe”.

Book Details

The cover is covered with white cloudy shapes of dogs with a young girl standing on the right side of the cover near the top. She is wearing a red coat and black pants and has long hair. The title is written out across one of the dogs.

Author’s Website
Darcie Little Badger
Publisher / Date
Levine Querido, August 2020
Genre
Fantasy, Young Adult
Page Count
362 pages
Completion Date
Originally – August 4, 2023 / Re-Read – August 15, 2024

“Sheine Lende” Review

“Sheine Lende” by Darcie Little Badger

Shane works with her mother and their ghost dogs, tracking down missing persons even when their families can’t afford to pay. Their own family was displaced from their traditional home years ago following a devastating flood – and the loss of Shane’s father and her grandparents. They don’t think they’ll ever get their home back.

Then Shane’s mother and a local boy go missing, after a strange interaction with a fairy ring. Shane, her brother, her friends, and her lone, surviving grandparent – who isn’t to be trusted – set off on the road to find them. But they may not be anywhere in this world – or this place in time.

Nevertheless, Shane is going to find them.

Review

I really enjoyed this book and the characters. I thought this one worked a bit better than “Elatsoe” for which this is a prequel. The main thing that makes this one work better for me is that Shane isn’t surrounded by adults who know as much as she does or more. She actually is the only one with the specific type of training for how to find people the way her mother does. The primary adults in this book are grandparents of those who are missing and her own grandparent who isn’t as helpful as he should be, and then a few additional teenagers she knows. In general I think this book just feels like it works better in the sense of being a book where a younger person solves the day while adults can’t help.

I also felt like the world building was a little better in this book. A lot of things were explained more, or if not it as acknowledged that information was not available. The mimic rings are unknown to everyone in this situation as no one really knows why the exist. So Shane has to do the work of finding out what is going on and who might have the information. I really like how she handles everything while also looking after her little brother. I also like the friendships she has and develops along the way.

I really liked the resolution of everything with what had happened to her mother and also another person that disappeared years ago. The clues are there to be had, and while the solution was little more whimsical than I’d usually enjoy, it totally worked for this book.

Warnings and additional reviews are available on the StoryGraph page for “Sheine Lende”.

Book Details

The cover is filled with yellow sunflower petals with a herd of gray mammoths interspaced within the petals. Two are mostly visible near the bottom left of the cover and more at the top right corner. There's a teenager at the bottom right of the cover wearing a white shirt and blue overhauls and carrying a brown backpack. She's walking towards the right. While looking behind her where the mammoths are in the picture. The authors name is at the top of the book with the title below it.

Author’s Website
Darcie Little Badger
Publisher / Date
Levine Querido, April 2024
Genre
Fantasy, Young Adult
Page Count
368
Completion Date
August 13, 2024

“The Jovian Madrigals” Review

“The Jovian Madrigals” by Janneke de Beer

At the edge of forever, we will not recognize ourselves.

It’s 2193, almost a century since scientists on Callisto discovered immortality. Every year, the Party sends a group of Earth’s best and brightest to receive this immortality. No one ever comes back.

Four people are making the journey to Callisto to receive immortality. Padraig, a brilliant physicist, dying of cancer. Cassandra, an orphan from the irradiated ruins of New York. Jocasta, a veteran of the Yugoslav Wars. Gautier, whose presence on Callisto no one will adequately explain. Immortality is meant to change them for the better. But once they’re on Callisto, what happens when they just want to go home?

Review

In general I enjoyed this book – the characters and world building were interesting. I liked the way the stories of the four characters were mostly independent which seemed to work well for the book. A character in the book describes a madrigal as “four voices, each singing their own song, intertwining occasionally” and that’s exactly how the book went. Though, I have to say the blurb for the book only gives a small part of what the book is about. The plot was complex and full of additional details that I was not expecting. I did feel some things were more confusing than they needed to be. While many events had answers in the end others seemingly did not. I also wasn’t entirely sure about the motivations of some of the characters, with Cassandra’s story line being the most confusing.

Thank you to NetGalley, Owlish Publishing and Janneke de Beer for access to the ARC in exchange for an honest review.

Book Details

The cover is taken up entirely by the orange and white swirls of Jupiter's surface. There is a figure of a person floating towards the right side of the cover facing sideways with their arms and legs extended towards the left. There are streams of yellow dots flowing around the figure and extending all the way to the left of the page. The title is near the top of the cover with the author's name at the bottom.

Author’s Website
Janneke de Beer
Publisher / Date
Owlish Publishing October 15, 2024
Genre
Science Fiction
Page Count
438
Completion Date
August 11, 2024

“The Seep” Review

“The Seep” by Chana Porter

Trina FastHorse Goldberg-Oneka is a fifty-year-old trans woman whose life is irreversibly altered in the wake of a gentle—but nonetheless world-changing—invasion by an alien entity called The Seep. Through The Seep, everything is connected. Capitalism falls, hierarchies and barriers are broken down; if something can be imagined, it is possible.

Trina and her wife, Deeba, live blissfully under The Seep’s utopian influence—until Deeba begins to imagine what it might be like to be reborn as a baby, which will give her the chance at an even better life. Using Seeptech to make this dream a reality, Deeba moves on to a new existence, leaving Trina devastated.

Heartbroken and deep into an alcoholic binge, Trina follows a lost boy she encounters, embarking on an unexpected quest. In her attempt to save him from The Seep, she will confront not only one of its most avid devotees, but the terrifying void that Deeba has left behind. A strange new elegy of love and loss, The Seep explores grief, alienation, and the ache of moving on.

Review

This was an interesting read! It would appear that in the aftermath of the invasion Earth has become a utopia of sorts but there’s a lot of questions about how it all works and how good things actually are for everyone. While there were some hints, the story was focused almost entirely on Trina dealing with her grief over losing Deeba, so we don’t really get any definite answers to those questions beyond how she was impacted. The ending got very weird and I’m still not entirely sure what all happened (beyond what were apparently some Seep fueled hallucinations). Overall I enjoyed it even though I was left with more questions than answers.

Warnings and additional reviews are available on the StoryGraph page for “The Seep”.

Book Details

The cover has a black background with for arms with their hands reaching across from left to right in various poses. Spaced over and in between the arms are flowers of various colors: red, yellow, black, white and blue. The title is at the top with the author's name at the bottom.

Author’s Website
Chana Porter
Publisher / Date
Soho Press, January 2020
Genre
Science Fiction
Page Count
216
Completion Date
August 9, 2024

“Monstrilio” Review

“Monstrilio” by Gerardo Sámano Córdova

After her son dies, Magos carves out a small piece of his lung. Acting on fierce maternal instinct and the dubious logic of an old folktale, she nurtures the lung until it gains sentience, growing into the carnivorous little Monstrilio she keeps hidden within the walls of her decaying childhood home in Mexico City. But despite her best efforts to turn the monster into a man, Monstrilio’s innate impulses threaten to destroy this fragile second chance at life.

A meditation on grief, acceptance, and the monstrous sides of love and loyalty, Gerardo Sámano Córdova’s ambitious debut spans the globe from Brooklyn to Berlin, offering an uncanny and precise portrait of being human.

Review

This was such a weird book (and a bit more sexually explicit, in a couple brief scenes, than I’d usually read), but also very good. The story is split into four sections with different narrators for each one – Magos, her best friend, her husband, and finally Monstrilio. Monstrilio’s section is probably the most complex as he is working out who he actually is and how he will continue to live. He ends up making a choice in the end that isn’t really a surprise considering all that has happened. Overall I felt like all four of the characters were unlikeable but sympathetic in their own ways, which made the book interesting to read. Monstrilio was obviously the most sympathetic because of how he was created and forced to be something he’s not by the choices others made.

Warnings and additional reviews are available on the StoryGraph Page for “Monstrilio”.

Book Details

The background of the cover is textured gray/green and there are several shapes around the cover, triangles, squares and circles. At the bottom middle is the head and chest of creature with pointed ears larger than its head and red eyes. The title of the book is at the top with the author's name in the middle.

Author’s Website
Gerardo Sámano Córdova
Publisher / Date
Zando, March 2023
Genre
Horror, Thriller
Page Count
336
Completion Date
August 8, 2024