“In Between Spaces” Review

“In Between Spaces: An Anthology of Disabled Writers” edited by Rebecca Burke

In Between Spaces, Stillhouse Press’s first ever anthology, centers the experiences of thirty-three disabled poets, short-story writers, and essayists as they navigate the physical and emotional complexities of disability, chronic illness, neurodivergence, and mental illness.

Review

This book fits one of the prompts for the Disability Readathon I’m participating in for April: “Read an anthology” – which is good because April is almost over – just two weekends left.

As I’ve said before I love reading anthologies (especially for Readathons) and finding new authors to check out. This one is no exception – the majority of the stories in the book are non-fiction or poems with a few fiction stories mixed in so it’s going to be listed on the non-fiction page of my website. I really enjoyed the majority of book though I’m not sure I understood all of the poems. Which is fine – poems work better for other people I’m sure. The fiction and non-fiction stories are all mixed together and all had similar themes and settings (modern day, real world) so the only way to tell was to look at the contents of the book and see. I wish the note about fiction or non fiction has also been included with the title of the story at the beginning of each. All of the stories were written by people with disabilities and were about disabled people which I like especially for non-fiction works as we always should be the ones to tell our own stories.

Book Details

The book cover has a light brown background with the title in the center. The bottom half is taken up by a collection of triangle shops in various shades green on the bottom corner and pink and orange along the left corner and cup the side towards the middle of the book.

Editor’s Website

Rebecca Burke
Publisher / Date
Stillhouse Press, November 2022
Genre / Topics
Essays, Disability
Page Count
268
Completion Date
April 21, 2023

The Problem of Intellectual Ableism

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

Content note: this post contains the r-word in a quote. I’ve decided to leave it in because it’s spoken by a person with intellectual disabilities making a statement about their own experiences and wishes.

There’s a lot of emphasis on intelligence that results in throwing people with intellectual disabilities under the bus. Most if not all of us end up doing it one way or another when we talk about intelligence as if it is the most important thing for someone to be. Those of us who have physical or sensory disabilities will often say things like “I may have x but my brain is fine!” – indicating that people should focus on our intelligence above all else because that’s what matters. The implication is that it would be okay to treat us badly if we had an intellectual disability.

And what does intelligence even mean anyway? In a post from 2018 liminalnest wrote:

“When you actually try to pin down what some sort of inherent “intelligence” is vs “has learned some stuff, addresses ignorance” It becomes clear that intelligence is a social construct That is used to maintain privilege and also oppress others”

Read the full post: “Intelligence is a myth : on deconstructing the roots of cognitive ableism”
Posted on June 23, 2018 by liminalnest

Part of the problem of course is how quickly we judge people for not understanding something. People with intellectual disabilities are treated as if they can’t possibly ever understand anything which causes them to become infantilized no matter how old they actually are. A lot of assumptions get made about a person intelligence and competence if they don’t automatically know something others think they should. Very few take the time to figure out why someone might not know something. Maybe they never got the chance to learn. Maybe they do need it broken down into easier concepts to fully understand.

I recommend reading all of Cal Montgomery’s work but his post “On Stupidity” is particularly relevant, especially the section where he was telling the story of how he was teaching a group of women from a group home about calling 9-1-1 and made a critical mistake.

“If you know the number to Nine-One-One (it’s 9-1-1), it’s really obvious. If you don’t, and if you are accustomed to all kinds of things having all kinds of confusing names, it’s not. It’s really not. And instead of preparing these women to be ready to take decisive action in an emergency, as they had asked me to, I had set them up to fail badly at a moment when failure would have had real consequences. I was not doing fine. I had prepared them to be stupid at a moment when they could have been brilliant and saved a life. And they weren’t going to ask, because their whole lives they had been encouraged to accept that they were just not the kind of people who know things, to accept that nobody is going to slow down and make sure they have the tools to learn.”

There’s a reason why people with intellectual disabilities still prefer person first language. Don’t be fooled by people who insist that it was created by non-disabled people. People with intellectual disabilities came up with it and asked for it because they knew exactly how badly they were being treated.

From “The History of People First

On January 8, 1974, the People First movement began in Salem, Oregon, with the purpose of organizing a convention where people with developmental disabilities could speak for themselves and share ideas, friendship and information. In the course of planning the convention, the small group of planners decided they needed a name for themselves. A number of suggestions had been made when someone said, “I’m tired of being called retarded – we are people first.” The name People First was chosen and the People First self-advocacy movement began.

Yes it’s true that the organization started with parents who said they “spoke for them” but here’s the first from the same article:

People First is part of the self-advocacy movement. The movement began in Sweden in 1968 when a Swedish parent’s organization for children with developmental disabilities held a meeting. The organization had the motto, “We speak for them,” meaning parents speaking for their children. The people at the meeting decided they wanted to speak for themselves and made a list of changes they wanted made to their services

No one forced person first language on them – it was entirely their choice. This is one of the many reasons those of us with physical and sensory disabilities cannot act as though identity first language is the only way to speak about us. The long history of people with intellectual disabilities having their choices taken away from them is another. It’s the whole reason they wanted it in the first place. It’s why “see ability not disability” continues to be important to many people. Because there are disabilities that result in dehumanization and choices being taken away more often than others.

It’s true many of us with all kinds of disabilities have assumptions made about us but it’s how we respond to those that remains important. We cannot continue to focus on intelligence as the only thing that matters. We cannot continue to throw people with intellectual disabilities under the bus. When we do we’re no better than the people who make the ableist comments and assumptions about us. We all deserve to be treated with respect no matter what our disabilities are because we’re people.

“One for All” Review

“One for All” by Lillie Lainoff

One for All is a gender-bent retelling of The Three Musketeers, in which a girl with a chronic illness trains as a Musketeer and uncovers secrets, sisterhood, and self-love.

Review

This was a fun read. The main character has to deal with a lot of BS because of her illness before she ends up in a much better situation. I did kind of feel like things went a little to easily for her with the new group of people but it works. Maybe sometimes you do end up with an entire group of good people without having to do much work. The plot was a little predictable but it was still fun to read.

I especially liked how POTs is worked into the story, which is set in 17th century France, in a way that made sense for the time without seeming unrealistic. There’s a lot to be said about how people who are disabled or chronically ill were treated at the time and now. The author also included brief explanation of POTs and how she worked it into the story at the end of the book.

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

Book Details

Book cover for One For All depicting a young woman with her back against a building with dark brown hair and wearing a red dress with a fencing sword held up in her hand. There are several other swords of the same type pointed at her in a circle around the title of the book in the center of the cover.

Author’s Website
Lillie Lainoff
Publisher / Date
Farrar, Straus and Giroux (BYR), March 2022
Genre
Historical Fiction, Young Adult
Page Count
336
Completion
April 7, 2023

“Meru” Review

“Meru” by S.B. Divya

For five centuries, human life has been restricted to Earth, while posthuman descendants called alloys freely explore the galaxy. But when the Earthlike planet of Meru is discovered, two unlikely companions venture forth to test the habitability of this unoccupied new world and the future of human-alloy relations.

Review

I really enjoyed this book – the world building is great and while some terms used were a bit confusing it was mostly explained as you read a long what they were referring too. I really enjoyed all of the characters involved – even one that was kind of frustrating at first. I really enjoyed how disability is used in this book as a benefit – the planet is found is actually more stable to those who have a specific disability. There’s also a lot of learning about different people and coming to understand that sometimes you don’t know everything you think you know.

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

Book Details

Book cover of Meru showing a person standing on a rock outcropping at the bottom of a canyon with walls on either Sid e of them the sky ahead is purple. The book title is arranged vertically down the middle of the book with the author's name at the top.

Author’s Website
S.B. Divya
Publisher / Date
47North, February 2023
Genre
Science Fiction
Page Count
443
Completion Date
March 31, 2023

Books Finished so far in 2023

Below are the books I’ve read so far in 2023, not necessarily in order within the month of completion.

Books Finished in January

Nophek Gloss The Graven #1, by Essa Hansen
I liked the characters though the plot was a bit confusing and sometimes frustrating, but I still enjoyed it. I will need to check out the next book.
Black Sun – Between Earth and Sky #1, by Rebecca Roanhorse
This was a really interesting book. I enjoyed the different points of view characters their stories as things progressed. I am looking forward to reading the next book in the series.
Everyone’s a Aliebn When Ur a Aliebn Too by Jonny Sun as Jomny Sun
A surprise graphic novel! It was a fun read.
Africa Risen: A New Era of Speculative Fiction, edited by Sheree Renée Thomas, Zelda Knight, Oghenechovwe Donald Ekpeki
Love After the End: An Anthology of Two-Spiritand Indigiqueer Speculative Fiction, edited by Joshua Whitehead
This applies to the above two because I’m saying the same about both. I really enjoyed the stories in both anthologies. They each have a lot of interesting characters and stories about the characters. As with any anthology I read I look forward to looking up the various authors and seeing what else they have written.

Books Finished in February

Not a Nation of Immigrants: Settler Colonialism, White Supremacy, and a History of Erasure and Exclusion by Roxanne Dunbar-Ortiz
This was an interesting read – some history I already new about and some I did not. There was a lot of stuff I would say is important for us to know.
The Vanished Birdsz by Simon Jimenez
The way this story unfolded took some getting used to but I really ended up enjoying it. There’s a lot going on and a single paragraph can span several years which makes things even more interesting. The characters make it all wroth it.

Books Finished in March so far

Some Kids Left Behind: A Survivor’s Fight for Health Care in the Wake of 9/11 by Lila Nordstrom
I really enjoyed reading this and I feel like I learned a lot about the aftermath of 9/11 from the point of view of people like Lila – people who lived near the towers. There’s a lot I had never heard about or realized. Also a lot comparisons to be made about what is going on now with COVID

COVID Precautions

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

Shortly after posting the previous post (Three Years of COVID) on the night of December 31st I developed a fever and increased congestion. The very mild congestion had been there but felt normal for this time of year. After sleeping badly that night I took a COVID test early the next morning. It was positive almost right away – apparently that signals a high viral load. Fortunately I was able to get in touch with a doctor through my insurance’s virtual Doctor portal and obtained a prescription for Paxlovid which I started that night.

I stopped eating at restaurants early in 2020 when the pandemic started and started wearing masks when going to the store and other places I needed to go that were indoors. I’ve continued to do so, including wearing a mask at work when we returned fully to the office. As I said in the previous post it’s been frustrating watching everyone go back to normal and acting like the pandemic is over. COVID is still here and in Massachusetts the cases are increasing. The fact that I got it now after all this time is only proof that everyone should have been taking it seriously.

Some people would say that since I got COVID anyway, taking precautions is pointless. I think they’re either ignoring or misunderstanding that the precautions available – vaccines and wearing a mask and social distancing – were always about reducing the risk of getting COVID. Nothing is 100% – including COVID precautions. Just like wearing a seat belt and having an airbag in a car isn’t a guarantee you’ll survive a serious car accident, but they do improve your chances of getting out of it alive. It’s also true that the vaccines and boosters help reduce the severity of COVID if you do get it.

What truly bothers me about getting COVID now is if I hadn’t been paying attention I would have missed the fact that I was developing a fever the evening December 31st. Because of how mild my symptoms were, if I hadn’t realized I had a fever, I may not have tested myself for COVID. It also happened that I still had a few home tests left at home otherwise I would have had to wait for a PCR test. Given all of this it’s really not a surprise COVID is out of control, and that’s why I believe we should be continuing all of the precautions.

The argument that COVID is not any worse than the flu has always been wrong – especially since this is a new virus that we don’t know enough about even three years later. There’s increasing evidence that evan mild cases (like mine) can result in damage to the body and Long COVID symptoms. Also it was never actually a good idea to repeatedly get sick to start with. People may think it’s “normal” to get colds every year but avoiding getting sick has never been a bad idea. Staying home when sick has always been the best idea – the problem is that many schools and workplaces don’t allow for adequate sick time. As a result we’ve developed this mindset that getting sick is just the way things are because it can’t be helped.

There’s also a lot of misinformation going around about “immunity debt” and people insisting that we need to get sick in order to have a healthy immune system. The article “There’s no such thing as a good cold: “Immunity debt” can explain this year’s eye-popping cold and flu season — but it can also be dangerously misinterpreted.” does a good job of explaining how it isn’t safer to get sick than it is to avoid getting sick if you can.

I continue to believe that mask and vaccine mandates are needed to slow if not stop the spread of COVID. That said I also believe there have been situations where mandates have caused more harm than good because of how they’ve been implemented. For example disabled people living in group homes, or anyone living in congregate settings, who already had limited access suddenly having access to nothing. No contact with family, no access to medical teams or other therapies, no ability to even go outside because the staff wouldn’t take them. In many ways their safety was more impacted by the lock downs than COVID even while being at higher risks of dying from it.

There also continues to be a disproportionate response to violations of various rules regarding masking and social distances. There were several news articles about the numbers of Black people being arrested (sometimes violently) for not social distancing or wearing a mask compared to white people doing the same thing being ignored. There’s also been an increase in violence towards Asian people – blaming them for causing COVID. I strongly recommend reading Steven W. Thrasher’s book “The Viral Underclass: The Human Toll When Inequality and Disease Collide” for more on the disproportionate responses to how society deals with managing disease.

Additional Reading:

The terrible toll of COVID-19 on people with intellectual disabilities” by Wendy Ross, MD at AAMC

COVID continues to hit nursing homes harder, AARP data shows: Cases are surging everywhere, and nursing home residents remain more likely to face severe illness and death.” by Sara Luterman at The 19th

The People Who Can’t Just Wear a Mask: The new CDC guidance provides hope for some of the people most isolated by the pandemic.” by Sara Luterman at Slate

High-Risk Pandemic Stories: A Syllabus” a collection of various articles, blog posts and tweets created by Alice Wong at the Disability Visibility project: “Since March 2020 I have been collecting strands of disabled wisdom about the pandemic and trying to gather, weave, and share them. Disabled, fat, older, poor, immunocompromised, and chronically ill folks have been oracles well before this global public health disaster and continue to this day as institutions and leaders treat marginalized communities as disposable.”

Long COVID: Long-Term Effects of COVID-19” by multiple authors at Hopkins Medicine

Long COVID stemmed from mild cases of COVID-19 in most people, according to a new multicountry study” by Sara Wulf Hanson and Theo Vos at The Conversation

Even mild Covid is linked to brain damage, scans show:
The new British research is the first to reveal striking differences in areas of the brain based on scans taken before and after a coronavirus infection.
” by Benjamin Ryan at NBC