This issue also includes a sad update on her health:
After two years of slowly making progress on my ‘uptime’ from my spinal CSF leak, I slid in the shower on Christmas Day when, unknown to me, my body scrub tipped over and oil dripped down onto the floor. The shower was very slippery even with shower slippers on — they’re no match for body scrub, apparently. I felt my the tearing at my leak site as my leg shot forward, and my heart sunk.
It’s now January, and many symptoms that had disappeared have come rushing back. The screeching tinnitus, the nausea, dizziness, and shakiness upright, the ‘brain sag’ at the back of my head yanking my skull downward the minute I stand, and the searing pain at my leak sites. Before I slid, I was averaging 7-8 non-consecutive hours upright a day. Now, I’m back to being almost entirely bedbound.
As I mentioned above, the Curious About Everything (CAE) newsletter is completely free and Jodi relies on financial support from her Patreon members to fund her activities, which includes not only the newsletter but her work as the president of board of directors of the Spinal CSF Leak Foundation (I’m assuming not a paid position) and other projects as well (you might know her from Legal Nomads). And this is where you come in. If you enjoy Jodi’s newsletter, consider supporting her on Patreon today.
Jodi acknowledges that until she gets better, the CAE newsletter might be a lot shorter or might not be sent out at all. To which you might say, well why should I support now when I might not get anything from it? My response to that is that we need to stop thinking transactionally and in the short term about our support of the things and people we love. Jodi is a freelance creator, writer, artist, and activist and if we want her to be in the best possible position to produce work that enriches our lives and helps other people for years to come, we need to support her now. We’re her social safety net — our investment in times of rebuilding, regeneration, and rebirth can make a huge difference. Here’s that link to Jodi’s Patreon again if you’d like to help out. Thank you.
I enjoyed this Nieman Lab interview with Holden Foreman, the first-ever Accessibility Engineer at the Washington Post. I’m particularly pleased to see that Foreman is thinking about accessibility as, well, not solely a problem that can be solved by better engineering:
The coding is the easy part. Centering our work in listening, and elevating voices that have long been marginalized, is essential to improving accessibility in journalism. Trust has to be earned, and I think this is the biggest opportunity and challenge of being the first in this role. It’s counterproductive for accessibility work to be siloed from broader audience engagement and DEI work. Keeping that in mind, a lot of my initial work has included conversations with various stakeholders to get a better understanding of where and how engineering support, education, and documentation are needed. Accessibility may be viewed as a secondary concern or just a technical checklist if we don’t engage with real people in this area just as we do in others…
It’s essential to think about accessibility not just in the context of disability but also in the context of other inequities affecting news coverage and access to news. For instance, writing in plain language for users with cognitive disabilities can also benefit users with lower reading literacy. [The Post published a plain language version of Foreman’s introductory blog post.] Making pages less complex can make them more user-friendly and also possible to load in the first place for folks in areas with bad internet, etc…
There are nuances specific to the accessibility space. Not everyone with a disability has access to the same technology. Screen reader availability varies by operating system. JAWS, one of the popular screen readers, is not free to use. And there are many different types of disability. We cannot focus our work only on disabilities related to vision or hearing. We need separate initiatives to address separate accessibility issues.
Ultimately, better accessibility tools for disabled users translates to better services for everyone. That’s not the only reason to do it, but it is an undeniable benefit.
Filmmaker James Robinson has an eye condition he calls “whale eyes” that causes him to see differently than (and look differently to) most people. In this short film, he makes a plea to “normal” people for acceptance of his and others’ differences.
But his video is also an essay on seeing, in the deeper sense of the word — seeing and being seen, recognition and understanding, sensitivity and compassion, the stuff of meaningful human connection.
In a society that does a lousy job of accommodating the disabled, Mr. Robinson appeals for more acceptance of people who are commonly perceived as different or not normal.
“I don’t have a problem with the way that I see,” he says. “My only problem is with the way that I’m seen.”
With a mandatory steep drop into a narrow chute with rock walls on two sides, Corbet’s Couloir at Jackson Hole in Wyoming is one of America’s most challenging ski runs. During the annual Kings & Queens of Corbet’s event, skiers from all over converge to huck themselves over the cornice, doing backflips, spins, and grabs of all kinds.
I’d heard that sit-skier Trevor Kennison, who has been paralyzed from the waist down since a snowboarding accident in 2014, had dropped into Corbet’s during the 2019 Kings & Queens event but I’d never sat down to watch the video. Do yourself a favor and check this out:
Trevor Kennison imagined skiing Corbet’s Couloir — Jackson Hole, Wyoming’s iconic and nearly vertical chute with a dicey, dramatic entrance — six times in his head while waiting at the top. He closed his eyes, took three fast breaths, then visualized it: Ride the ramp at just the right speed, hit the takeoff, hug the rocks on skier’s left, then stick the landing into the chute. If he could picture it going perfectly in his head, he knew he could pull it off.
He’d wanted to ski this line for years and finally, the day had come. Kennison, who’s paralyzed from the waist down, says he wasn’t scared. “I knew what I had to do. I was ready,” Kennison, 26, said. “Everything I do is calculated risk. I think, where is it going to go wrong? I learn so much from the people around me.”
So great. I finally went down this rabbit hole because Kennison skied at our local ski area yesterday here in VT and dropped a couple of cliffs. I didn’t get over there to hang out, but I did see a friend of my son’s skiing with him in his Insta Stories.
Pro skateboarder Felipe Nunes hails from Brazil, is 20 years old, and recently signed on to Tony Hawk’s Birdhouse team. Nunes also lost both legs when he was six. From an interview with Nunes in Thrasher:
I was six when it happened but the doctors said it was super fast. I didn’t really hesitate because I was so young. I used a wheelchair until about the age of 11. I was a kid who wanted to do everything. Regardless of not having two legs I wanted to do it all. I rode my bike, played soccer, pretty much everything out in front of my house. I was a normal kid. It didn’t even look like I was missing part of my legs. My parents were essential in my recovery because they never stopped me from doing anything. They were afraid of me getting hurt like any parents, but they never held me back. When I wanted to give up the wheelchair and ride the skateboard full time, they let me go.
Still lifes of fruits and vegetables arranged on tables and in baskets & bowls have been a staple of Western art for centuries. Spanish creative studio Quatre Caps has brought the still life into the supermarket age with their project Not Longer Life. The project was conceived to call attention to wasteful plastic packaging of fruits and vegetables, but as this post points out, packaged and pre-cut foods can be easier to eat for disabled people.
As a person with limited hand dexterity, I look at this and see an easier way to eat healthy food. I actively avoid eating oranges, not because I dislike them (they are definitely tasty) but because I have so much difficulty peeling them. Any attempt to peel an orange is likely to result in an unappetizing mess because I’ve squeezed the orange to hard while trying to maneuver it for peel removal.
I don’t have access to peeled oranges from my grocery store though I’d probably take advantage of them if I did. I do buy precut vegetables all the time because it is more convenient and safer for me to do so.
Adam and Neil Pearson are identical twins who have neurofibromatosis, a rare genetic disorder that affected the two of them quite differently.
“I was always aware that I had the same condition as him, but also fully aware that he had the facial disfigurement and I didn’t,” Neil says in the film. Adam suffers from benign tumors that began forming on his face when the Pearsons were boys. They grew progressively worse over time. In school, he endured much bullying-“one of the worst things a human can do to another human,” as he describes it in the film. As an adult, Adam explains that he can never go anywhere without being gaped at. Neil, meanwhile, appears physically unscathed but experiences neurological problems that severely impair his memory.
The 3D model for each of the hacks is available for free download and can then be constructed with a 3D printer. Cane By Me is a ledge for a cane or walking stick that attaches to the Malm bed frame:
Glass Bumper is a wheelchair bumper that protects the glass doors on Billy bookshelves:
Couch Lift fits around the legs of the Karlstad sofa, raising it further off the ground for easier sitting & standing:
19-year-old bioengineering major David Aguilar, aka Hand Solo, has built himself a series of prosthetic arms out of Lego. In this short video, he shows off some of the arms, including his latest 4th generation model:
He built his first Lego prosthetic limb when he was 18. According to this Reuters article, Aguilar names his arms using the same system as Iron Man uses for his armor suits (MK-1, MK-II, etc.) and wants to build low-cost prosthetics after he graduates from college.
For a cultural program to accompany the 2012 Olympics in London, artist Sue Austin created a video of herself exploring a coral reef in a wheelchair outfitted with motors and wings to help it steer and go through the water.
It’s a tiny bit surreal to see how freely she moves around in something that many of us associate with an absence of a particular type of movement. But as Austin explains in her 2013 TED Talk, she thinks of her wheelchair in terms of freedom of movement, which is highlighted for others by the underwater video. (via colossal)
I’ve often said that every two-dimensional map is a lie; a perfect map would be able to show a city in three dimensions. (Or four, to show how they’ve changed over time.)
Height tells you so much; the steepness of streets, where water tends to flood, even often class distinctions, at least traditional ones. Try walking around San Francisco sometime, or Gloucester, Massachusetts, following a map that tells you take a left turn, straight uphill. Better still, try this in a wheelchair.
Toby Eglesfield, a graphic designer working in New Zealand, took this challenge seriously. After some aborted attempts with arrows, he settled on a trimetric projection (it’s like isometric, but slightly different), with different colored wedges to indicate the relative steepness of a street. Here’s the basic idea:
And here’s the completed product:
Created for the disAbilities Resource Centre in Queenstown, the map includes marks for accessible toilets, car parks, etc. I’d love to see a version for Manhattan, San Francisco — anywhere, really, but especially older cities with varied topography.
Alexis Madrigal is great at the systemic sublime — taking an everyday object or experience and showing how it implicates interconnected networks across space, time, and levels of analysis. His history of the drinking straw — or rather, “a history of modern capitalism from the perspective of the drinking straw” — is no exception. It doesn’t give quite enough space to disability, either in its history or its examination of the straw’s future — the stakes of that debate are better-covered in this David Perry essay from a year ago — but there are still plenty of goodies.
Temperance and public health grew up together in the disease-ridden cities of America, where despite the modern conveniences and excitements, mortality rates were higher than in the countryside. Straws became a key part of maintaining good hygiene and public health. They became, specifically, part of the answer to the scourge of unclean drinking glasses. Cities begin requiring the use of straws in the late 1890s. A Wisconsin paper noted in 1896 that already in many cities “ordinances have been issued making the use of wrapped drinking straws essential in public eating places.”
Add in urbanization, the suddenly cheap cost of wood-pulp paper goods, and voila: you get soda fountains and disposable straws, soon followed by disposable paper cups, and eventually, their plastic successors, manufactured by a handful of giant companies to the specifications of a handful of other giant companies, in increasingly automated processes for the benefit of shareholders. It’s a heck of a yarn.
By eight months Fiona developed a love for clapping. At nine months she had her first grand mal seizure. At eleven months she rolled from front to back. At one year old she weighed twelve pounds. During that first year, her syndrome revealed itself to be simultaneously life-altering and, in some strange way, just fine. A new normal. Her medical issues were manageable. The problem, it became clear, was mine: I wanted her different. The daily prayer inside me was an impossible wish to scrounge the earth and find that missing bit of her fourth chromosome. I imagined it was buried among fossils in an ancient, surreal sand dune.
Ten times this piece sent my thoughts spiraling out in all directions. I already know I’m gonna be thinking about this all week. (via @ftrain)
I watched Finding Dory with my daughter this weekend. It was our second time through and while I’d enjoyed it when we saw it in the theater, this time the theme really hit home. At the most basic level, Finding Dory is about animals with disabilities, how their supposed weaknesses can be strengths, and the challenges faced and strategies employed by parents of children with disabilities. The characters from the movie use their varying abilities in many different to help their friends.
Hank is an octopus who is missing a tentacle and struggles with anxiety about the open ocean. He’s able to fight through that anxiety to form a fast bond with Dory and return to the ocean.
Becky is a loon who appears unbalanced but is a very loyal friend once you’ve made a personal connection with her. Nemo believes in Becky and she comes through in a crucial moment in the movie. (Note that “loon” is a bird but is also slang for someone who is mentally ill.)
One of Nemo’s fins is smaller than the other. It doesn’t slow him down. In this film as well as in Finding Nemo, Nemo journeys across the ocean and helps his friends out of numerous scrapes.
Marlin, Nemo’s father, struggles with anxiety related to parenthood1 after he lost his mate and all but one of his children in a terrible accident. In Finding Nemo, that anxiety fuels him as he searches an entire ocean for his missing son, but at a crucial moment he also realizes that it’s damaging his relationship with his son and holding him back. In this movie, he comes to accept Dory and her full abilities and, with the help of his son, is able to put himself in her shoes — “What would Dory do?” — to make a timely escape.
Destiny is a nearsighted whale shark who nevertheless has a keen ability to help people find their way using her superior verbal communication skills. With the help and encouragement of friends, she is able to escape her tank and help rescue her friend Dory.
Bailey is a beluga whale who temporarily loses his echolocation and struggles with a lack of confidence. With their friends in need, Destiny encourages Bailey to rediscover his ability to help. (Basically, Bailey and Destiny help each other “see” in different ways.)
Jenny and Charlie are Dory’s parents. When Dory was young, they taught her to face her disability head-on and spent countless hours providing her with the encouragement and skills that she needed to become self-sufficient. And after Dory disappeared, they escaped to the ocean, built an elaborate display designed to help Dory find her way back to them, and waited years for her to return.
And Dory, the hero of the story, has short-term memory loss. Her inability to remember things for more than a minute or two has equipped her with a fierce sense of loyalty for her friends & family, a canny impulse for action when they are in need, and an infectious enthusiasm. Again and again, she acts when something needs to be done without the burden of past or future holding her back. In the end, with the help of Nemo and Marlin, she comes to see that her disability is a great strength and uses it to save her friends and find her parents.
Yeah, Pixar makes movies for children that are fun and full of gags & engaging characters. But time and again, from The Incredibles to Wall-E to Ratatouille to Inside Out, Pixar challenges audiences of all ages with larger themes relevant to society at large. If you missed it the first time around or just left your kids to watch it alone, I encourage you to give Finding Dory a chance. Bona fide blockbuster movies 1 that deal intelligently and with care about marginalized issues like disability are hard to come by.
I relate so much to Marlin in this respect that it makes me uncomfortable. Finding Nemo was my favorite Pixar film for a long while and watching it now, after becoming a parent in the meantime, it resonates in an entirely different way.↩
Finding Dory grossed more than $1 billion worldwide in 2016, second only to Captain America: Civil War for highest worldwide gross. The movie is currently 8th on the all-time domestic grosses list, the highest entry for an animated film.↩
The Kottke post I probably think about most often is 2009’s “One-handed computing with the iPhone.” It just has all these perfectly rounded sentences in it, like this one:
A portable networked computing and gaming device that can be easily operated with one hand can be used in a surprising variety of situations.
Try to take the adjectives and adverbs out of that sentence. (Strunk and White say to “write with nouns and verbs, not adjectives and adverbs.” Strunk and White are often surprisingly stupid.)
But try adding any more adjectives or adverbs. Try adding in or taking away any of the clauses. Try writing a better sentence that describes the same thing. (This is also known as Mohammed’s “produce a better surah” Test.) Try to misunderstand what the sentence means. I’m a professional writer. So is Jason. I appreciate this stuff.
There’s also a lot of structural and emotional variety in this post. The author gets mad. He makes jokes. But mostly, he observes. He studies. He empathizes.
People carry things. Coffee, shopping bags, books, bags, babies, small dogs, hot dogs, water bottles, coats, etc. It’s nice to be able to not put all that crap down just to quickly Google for the closest public restroom (aka Starbucks).
It is very occasionally necessary to use the iPhone while driving. No, not for checking your stock portfolio, you asshole. For directions. Glance quickly and keep your thoughts on the road ahead.
My wife spends about five hours a day breastfeeding our daughter and has only one hand available for non-feeding activities. That hand is frequently occupied by her iPhone; it helps her keep abreast (hey’o!) of current events, stay connected with pals through Twitter & email, track feeding/sleeping/diaper changing times, keep notes (she plans meals and grocery “shops” at 3am), and alert her layabout husband via SMS to come and get the damned baby already.
I liked “layabout husband” so much when I read it, I started referring to Jason as “noted layabout Jason Kottke.” At a certain point, I forgot where the phrase came from.
But read that last paragraph again. You can’t read that description of Meg and not think of it every time you’re doing any of the things she does in that sentence: every time you have to have to carry a bag and use your phone, every time you have to open a door and use your phone, every time you don’t have to use your phone while walking down the street but you do it anyways, because you can, and the fact that you can now means that you have to.
I think about it every time I cover a new gadget and companies start touting its hands-free features; how it’s added a new voice interface; how its new keyboard algorithm makes it easier to correct for typos. People didn’t really use to market that sort of thing. But companies started to notice that these were the features their customers liked best.
I also thought about it when I read these tweets Meg wrote, just yesterday and this morning, about how the newer iPhone’s longer screen borks its one-handed functionality.
New iPhone (was on 4S): holding w left hand, pinky supporting bottom-right corner, my thumb can’t reach diagonal to top right buttons…
I have enormous man-hands, and I still think that the trend toward enormous screen sizes on smartphones stinks. Not only is it harder to use a phone with one hand, it’s harder to fit a phone in a pants pocket, and a long, thin phone is more likely to tip over and get knocked off a table or shelf.
Markets are gonna market, and specs are gonna spec, but it often feels like companies are forgetting that computers are for people, first. And people have bodies, those bodies have limitations, and all of us have limitations in specific situations.
We’re all disabled sometimes. If I turn off the lights in your room, you can’t see. If I fill the room with enough noise, you can’t hear. If your hands are full, you can’t use them to do anything else.
But as Sara Hendren writes, “all technology is assistive technology.” When it’s working right, technology helps people of every ability overcome these limitations. It doesn’t throw us back into the world of assumptions that expects us all to be fully capable all of the time.
That’s not what good technology does. That’s not what good design does. That’s what assholes do.
I think often about Jason’s post on one-handed computing because I’m in the story. He wrote it for his wife, and he wrote it for me. I’d badly broken my right arm in an accident, snapping my radius in half and shooting it out of my body. Emergency room doctors stabilized my arm, then surgeons took the fibula from my left leg and used it to create a graft to replace my missing arm bone.
I’d broken my right leg, too, and sustained a concussion. With both legs unstable, I was stuck in a bed most days, and even when I could start putting weight on my left leg again, I couldn’t climb in or out of bed to get into a wheelchair without help. I’m over six feet tall and I weigh about 300 pounds, so most nurses and orderlies were out of luck helping me. I couldn’t type. I couldn’t use the bathroom. I had hallucinations from the pain medicine. I was extremely fucked up.
Another victim of the accident was my Blackberry, my first-ever smartphone, which I bought just before I finally got my PhD. (I revealed this once in a 2010 post for Wired. Commenters called for my head, saying anyone whose first smartphone was bought in 2009 had no business writing for a gadget blog. “I’m sorry,” I told them. “I spent my twenties learning things, not buying things.”)
After I was discharged from the hospital, I spent money I didn’t have to get an iPhone 3G, which was my phone for the next three years. It was mailed to me at the rehab institute where I learned how to walk again. And it changed everything for me. Even with my left hand, I could tweet, send emails, browse the web. I could even read books again — even print books weren’t as easy as the iPhone.
And then I read Jason’s post about one-handed computing. And I thought and thought and thought.
I started blogging again. I even started my own community blog about the future of reading. The next year, that led to some articles for Alexis Madrigal at The Atlantic.
I was back home by then. My injuries had cost me my postdoctoral fellowship and a second crack at the academic job market. But I was able to audition for and win an entry-level job writing for Wired the same week that I did my first stint guest-hosting for Kottke.
And I swore to myself that I would never forget: technology is for people.
Anyways, the accident that broke my arm in half was four years ago today.
It was on Jason’s birthday. He was 36 then; I was 29. His son was two, almost exactly the same age as my son, his brand new baby daughter less than a week old.
It was all so very long ago. It was the beginning of the rest of my life.
If you ask me why Jason Kottke is important to me, it’s because in 2005, he found my little Blogspot blog when it only had a couple dozen readers and started linking to it. It’s because his idea of “Liberal Arts 2.0” led to a book I made with friends, some of whom went off to make extraordinary things of their own. (We offered to let Jason write the forward; characteristically, he declined.)
Then Jason became my friend. Every so often, he gives me the keys to this place he’s built — home to the best audience on the internet — and lets me write about things I care about. And because of all of that, I got a second chance — me, with all of my flaws and frailties, my misdeeds and mistakes.
But really Jason is important to me because Jason is always writing about how technology is for human beings. He doesn’t bang gavels and rattle sabres and shout “TECHNOLOGY IS FOR HUMAN BEINGS!” That’s partly because Jason is not a gavel-banging, sabre-rattling sort of person. But it’s mostly because it wouldn’t occur to him to talk about it in any other way. It’s so obvious.
The thing that tech companies forget — that journalists forget, that Wall Street never knew, that commenters who root for tech companies like sports fans for their teams could never formulate — that technology is for people — is obvious to Jason. Technology is for us. All of us. People who carry things.
People. Us. These stupid, stubborn, spectacular machines made of meat and electricity, friends and laughter, genes and dreams.
Happy birthday, Jason. Here’s to the next forty years of Kottke.org.
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