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

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. Written by Lillie Lainoff
Published by Farrar, Straus and Giroux (BYR), March 2022
Number of Pages: 336
Completed: April 7, 2023

“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.”

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.

“Meru” Review

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.
Written by S.B. Divya
Published by 47North, February 2023
Number of Pages: 443
Completed: March 31, 2023

“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.”

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.

“Transcendent” Review

Book cover of Transcendent showing a black person with a head scarf with their back towards the cover with their head turned to the right. They are wearing a colorful out fit and a head scarf with the words of the title in it and the words fantasy and community and many other wordsFull title: “Transcendent: The Year’s Best Transgender Speculative Fiction
Edited by K.M. Szpara
Published by Lethe Press, September 2016
Number of Pages: 255
Completed: March 26, 2023

“There are fantastical stories with actual transgender characters, some for whom that is central and others for whom that isn’t. And there are stories without transgender characters, but with metaphors and symbolism in their place, genuine expressions of self through such speculative fiction tropes as shapeshifting and programming. Transgender individuals see themselves in transformative characters, those outsiders, before seeing themselves as human protagonists. Those feelings are still valid. […]”

I love anthologies! Several awesome stories and new authors to discover every tine – what more can you ask for? Doesn’t matter if I like all of them or not – they’re always interesting to read and explore different stories and ideas. This one was no different. Some stories I didn’t really understand but that’s okay – others probably will get more out of them. I’m still going to check out every author and find out who they are and what else they’ve written because that’s always fun.

“Seeds for the Swarm” Review

Book cover for Seeds for the Swarm. a person with shaggy light brown hair and white skin is on the cover sideways looking up in. In the background are various colors and green flying bugs at the top of the cover. Written by Sim Kern
Published by Stelliform Press, March 2023
Number of Pages: 440
Completed: March 26, 2023

Book Description:

Rylla McCracken dreams of escaping her family’s trailer in the Dust States to go to college, but on the eve of her eighteenth birthday, her mother demands she drop out of school to work for Lockburn chemical refinery instead. When Rylla learns Lockburn is planning to dam the Guadalupe River-the last flowing water in Texas-she defies her mother to protest in the state capital. The protest ends in disaster, but her ensuing viral infamy gains Rylla an acceptance to the mysterious Wingates University.

First I want to say I really enjoyed this book. However I wish I had known going in that it was actually part one in a series and the ending doesn’t actually resolve any of the various plot points that come up in the story. It’s not a hard cliffhanger where someone is about to die horribly, but it is a story that needs resolution that won’t happen until the next book. This is more about me though – when I read a series I like it best when each book mostly stands on its own with a resolved plot at the end. Anything else is just frustrating – especially when I don’t know when the next part is coming. I may have gone ahead and read the book anyway knowing this but I would have liked to know what I was getting into.

However all that said – the book is worth reading, especially if you don’t mind unresolved endings, because the characters are great. Sure they’re teenagers and the main character Rylla, makes some ridiculous choices but she is a teenager, and going through a lot of changes. It should be noted I was always a rule follower so don’t have any awareness of what is actually reasonable when it comes to teenage shenanigans. It’s also a book where kids or teenagers have to save the world which I’ve gotten a bit tired of but it felt realistic given our current world. The book may be set in the future with even worse damage from climate change but it’s a future we could very easily end up in. The emphasis on how rich white people will always able to survive comfortably while everyone else suffers is exactly how it is now.

And yes, it’s likely I’ll read the next book as soon as it comes out…

“The Thirty Names of Night” Review

Book cover for The Thirty Names of Night. The background is white with a multi-colored bird's wing and the title over the wing.

Written by Zeyn Joukhadar
Published by Atria Books, November 2020
Number of Pages: 291
Completed: March 23, 2023

From the first part of the description of the book on the publisher’s website:

“Five years after a suspicious fire killed his ornithologist mother, a closeted Syrian American trans boy sheds his birth name and searches for a new one. As his grandmother’s sole caretaker, he spends his days cooped up in their apartment, avoiding his neighborhood masjid, his estranged sister, and even his best friend (who also happens to be his longtime crush). The only time he feels truly free is when he slips out at night to paint murals on buildings in the once-thriving Manhattan neighborhood known as Little Syria, but he’s been struggling ever since his mother’s ghost began visiting him each evening.”

“One night, he enters the abandoned community house and finds the tattered journal of a Syrian American artist named Laila Z, who dedicated her career to painting birds. She mysteriously disappeared more than sixty years before, but her journal contains proof that both his mother and Laila Z encountered the same rare bird before their deaths. In fact, Laila Z’s past is intimately tied to his mother’s in ways he never could have expected.”

I really enjoyed everything about this book. At its core it’s a story about the narrator figuring out himself and also figuring out what happened Laila Z. I did like that even before the narrator come’s out and chooses his name his deadname is never used by anyone. Even the chapter headings that signify points of view block out his deadname until it switches to the name he chooses for himself. A very deliberate choice throughout the book and I think it’s important to not know the name he chooses he does. To that end – consider avoiding the full description of the book as well as reviews and interviews until you’ve read it. This is one of the few times I’d say not being spoiled is important.

I did end up feeling there were one or two plot points I didn’t really understand in the book. For example something seems to be going on with the birds in the book – large numbers are appearing in the city and other related things – but I don’t think we ever get an explanation for that. Though I somewhat wonder if the birds are a metaphor for the internal conflict of the narrator figuring himself out? Or I missed something in my late light reading? Or both…? However it didn’t stop me from enjoying the book as whole because the narrator’s journey is the point. While everything else has meaning understanding it completely isn’t needed.

I want to link to one interview with Zeyn Joukhadar I found that adds some additional context to the book that I can’t speak to. As Zeyn Joukhadar says at the beginning of the interview:

I wanted to tell a story that was fundamentally about many things at once,” Joukhadar says. “It was just as much about being trans as it was being the child of an immigrant, about being Muslim, about being Arab American. I want those things to be inextricable from each other.”

I feel like I learned a lot of things from this book in regards to the above quote. The interview is also interesting in that I learned that the author was also exploring their own identity while writing the book. As was the person conducting the interview. The book and the interview both provide some insight to what that’s like.

Full interview at: ‘It’s Powerful to Let People Love You with a Name that You Chose for Yourself’: An Interview with Zeyn Joukhadar by Ziya Jones at Hazlitt – this interview does reveal the narrator’s chosen name so you may wish to read it after reading the book.

Also another word of caution – there some reviews that misgender the narrator in entirety – Don’t bother reading any of those.

Trans Rights Read-a-Thon

Square image with a banner in tans colors around it with the words I'm taking part in the trans rights readathon March 20th to March 27th and the hashtag  #TransRightsReadathon under thatI am taking part in the from March 20th to March 27th!

My goal is to read at least three books and fundraise for the Trans Health Legal Fund during that time.

I am currently reading “Laziness Does Not Exist” by Devon Price. While Devon Price is actually Trans I’m not going to cheat and use that as one of the three books because I’m hoping to finish it today.

Then tomorrow evening after work I will dive into the read-a-thon. The three books I’ve picked out to read are:

The Thirty Names of Night” by Zeyn Joukhadar

Seeds for the Swarm” by Sim Kern

Transcendent: The Year’s Best Transgender Speculative Fiction” by K.M. Szpara et al.

During the read-a-thon I will be posting on my Mastodon account about the books I’m reading and some fundraising related posts. I’ve already donated $25 to the Trans Health Legal Fund – if you have the means to donate please consider donating there as well or another charity of your choice. If you cannot donate you can still help by boosting by following the on various social medias and sharing the posts you see.

Screenshot of an email receipt from the Trans Health Legal Fund showing that $25 was donated

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 , 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 , 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

Three Years of COVID

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

I’m so frustrated that we’ve had three years of a pandemic that very few people have taken as seriously as they should. It’s been frustrating watching everyone drop all precautions and acting as though there’s no reason to continue being cautious. The news paper articles and other media mocking those taking precautions have been happening for a while but they’re getting particularly worse as those of us who are still taking precautions are largely viewed as fearful of everything.

The pandemic isn’t over despite what a lot of people want to believe. We never had COVID under control and most people never took it as seriously as they should have. Part of the reason for that is that the groups most impacted were minorities (Black and Indigenous people, disabled people and/or elderly people). People, including the director of the CDC kept saying only the old and already sick would die. The statement is horrible on its own but it’s also largely a lie given the numbers of deaths there have been from COVID at all age levels and health. But then some of us are used to pushing aside scary ideas and focusing on the positives…

In chapter three of their book “The Future Is Disabled” Leah Lakshmi Piepzna-Samarasinha has a section called “Death COVIDs” and Disabled Grief Access Intimacy” which begins with the following two paragraphs:

“Every single BIPOC person I know had an incredible number of people in our lives die during the pandemic. A lot of us weren’t strangers to death, we’d lost people to suicide or gun violence or cancer before. But the past two years of COVID and the triple pandemic have meant we’ve often lost more people, more quickly, than ever before. I know friends who’ve planned seven funerals since 2020, or lost four people they loved in one month.

And it’s been my experience that a lot of even my white disabled friends were uncomfortable with this kind of mass death faced by their BIPOC disabled friends. They lost people too, but it wasn’t quite at the same level. And they didn’t know how to deal with it when we did.”

Later on in the same section Leah Laksmi talks about the difference between their experiences with COVID – “death COVIDs” and other people’s (mostly white) experiences with COVID – “boring COVID”. I’m admitting my own privilege here – I’m one of the people who experienced mostly boring COVID, at least in terms of my personal life. While I know people who have gotten sick none of them have actually had a serious case or died from it. Which is probably why even at work we’re mostly back to normal. For some value of normal… we should all be thinking about what normal actually means.

Imani Barbarin of the blog Crutches and Spice has an great blog post on that subject: “You’re Never Getting “Normal” Back

“We cannot afford normal—and it seems that only the privileged are the ones who can actually afford to return to it. To want normal says that you have identified all of the issues put on display and said, “I’m fine with that.” Unfortunately, the rest of us cannot be and never have been alright with normal. […]”

I know exactly how privileged I am in that I haven’t yet gotten sick with COVID, nor has anyone in my family died from it. At least not yet – given how the rest of my family has mostly gone “back to normal” it’s probably only a matter of time.

Edited May 2023

For various reasons I do not wish to discuss at this time I am no longer involved with Marked By COVID. As such I have removed all links to that group.

Another group I’ve been following is the COVID-19 Longhauler Advocacy Project which formed in 2020 and has become “an organization known for comprehensively advocating on behalf of the Long COVID community” – Long COVID is another thing people aren’t taking seriously enough. People don’t seem to realize that even if they’re lucky enough to survive COVID they could still end up with Long COVID symptoms. I know a handful of people who are now experiencing Long COVID – though not directly within my personal life.

I’ve also been following the People’s CDC and their reports about COVID levels as it’s become clear the official CDC can no longer be trusted to give an accurate picture of COVID. “The People’s CDC is a coalition of public health practitioners, scientists, healthcare workers, educators, advocates and people from all walks of life working to reduce the harmful impacts of COVID-19.” They’ve been posting weekly “Weather Reports” about COVID – the latest one is from December 25th.

Soon I’m going to write another post about COVID precautions that we should be taking but also about how those same precautions have disproportionately impacted various groups of people. Because both things are important to be aware of as we go forward with 2023. COVID isn’t over and how we handle it speaks to how we care about others. Meanwhile check out the additional readings and links below

Additional Readings

‘We’ve always been surplus’: Individual tragedy and collective trauma from COVID: Survivors organize toward the first statewide memorial for COVID in the U.S.” by Austin Fisher at Source NM

Op-ed: Move on? When it comes to COVID-19, we need an official Memorial Day” by Jennifer Ritz Sullivan at Metrowest Daily News

For the Uninsured, COVID Care has Entered a New Stage of Crisis by Noah Weiland and Sarah Kliff at Yahoo News

“Study: Covid’s racial disparities made some white people less vigilant about the virus: A researcher said that the findings show that white people tend to care less about Covid and its impact when they believe it is “not a white people problem.” by Char Adams at NBC News

Social Media Links for Mentioned Organizations and Individuals

COVID-19 Longhauler Advocacy Project on Twitter

COVID-19 Longhauler Advocacy Project on Instagram

People’s CDC on Twitter

People’s CDC on Instagram