- Smart phone tutoring therapy for senior citizens

- Long-forgotten software

- The diving board of panic

- Unstoppability snake oil

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- Drinking a train of beer

- Scots attempt French

- The joy of going to Foxborough and not having to watch the Patriots

- The beautiful game (of Knicks basketball)

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Hear this post on the Deep Sy podcast

I’m sure I’ll write about my position in this discussion at some point. But for now, I want to take the hypothetical one step further. What if the question wasn’t whether to leave blindness behind, but chronic pain. Then, surely, the answer would be an unequivocal “yes, I’d do it.” Right?

Not exactly unequivocal. Lucy Webster is a British journalist and disability activist with cerebral palsy. She also has chronic pain. Or she used to. She happily concedes that pain is “rubbish.” But in a recent post, which appears below in full, she details her complex thoughts on the pain vanishing, and how to communicate those thoughts to non-disabled people. I always find myself nodding along to Lucy’s incisive articulation of the strangeness, anguish, and joy that are disabled life in an ableist world. But I wanted to highlight this post because it explains how the assumptions underlying the question “Why wouldn’t you?” lead, quite directly, to suffering and even death for disabled people. They are assumptions we (including, often, me) need to unearth, scrutinize, and then chuck in a bonfire.

Thanks so much to Lucy for permission to repost here. She writes about disability, sexuality, and gender on Substack at The View from Down Here (which is also the title of her book). Click the subscribe button. It’s well worth your time.

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Pain and the Nonsense Concept of ‘Quality of Life’

Some complicated thoughts

Hello,

Whisper it… For the last two weeks, I haven’t been in pain.

Maybe that doesn’t sound like a big deal to you. But it is to me. Because I’ve spent about a decade managing a searing pain around the top of my spine and across my right shoulder, that honestly felt like someone was holding a lighter in my muscles. For the first five or so years it would come and go, worse when I was working or out and about but better when I got out of my chair. But then it settled into a constant nag, angry and raw. In the past few years, the only relief came from a massage and only lasted 48 hours or so, if I was lucky.

To be honest I’d just priced it in. The pain was bad but what was worse was all the mental calculations that came with it. How long could I sit up for? Which activity should I prioritise? Was the fun thing I wanted to do worth the payback? How much work could I take on? It made me less creative, less willing to try something new in case it turned out not to be worth the effort.

I thought this was just how life would be. Then I started attending my new physio and Ellie turned me upside down (no, I shan’t elaborate) and gave me permission to move how I want to. The pain started to melt away. Because it turns out that the pain wasn’t just a natural consequence of ageing with CP and doing more than I was ‘supposed to’. It was a consequence of holding myself still in order to perform acceptability, of doing things the way I’d been told was normal rather than the ways that work for me. Moving in ways that are more natural for me, and asking for more help than I used to, has helped bring some fluidity back into my body, reducing the rigidity that was the source of all that pain. (I also think having my body and brain treated with a new level of kindness has had quite a lot to do with it, but that is perhaps a topic for a different day.)

I’ve been reluctant to write this post because I know how lucky I am, both to be able to afford this care and to have a body whose pain is treatable. I sort of feel like I’m bragging. And I sort of don’t want to jinx it for myself. But I thought I should write this post because I want other people with CP to know that you don’t have to just grin and bear it. You deserve care that prioritises your wellbeing over shoving you into a box that was never made for you.

And I wanted to write this post because it brings up something important that applies far beyond my body, or CP, or the reduction of pain. Because I’ve been finding it hard to tease out how I feel about this development, and my fear that my delight at being almost pain free will be misinterpreted as saying something about the lives of people who are in pain, or about the need for disabled people to ‘get better’ in the traditional sense.

Pain is, it’s fair to say, rubbish, so being in less of it does mean that my day to day life has improved. I think it’s fine to acknowledge that. But do you know what hasn’t changed? The list of things I can and can’t do (indeed, I am making a concerted effort to do less, as I attempt to put less strain on my nervous system).

In mainstream society, though, we judge disabled people’s ‘quality of life’ by how able they are compared to a nondisabled ‘norm’. The less able, the worse ‘quality of life’ we are assumed to have. I hate this so much that every time I tell someone how great my new physio and pain reduction are, I feel the need to clarify that I am not gaining ability and nor do I want to.

(Important caveat: while pain is undeniably crap, it is also perfectly possible to have a very good life while being in considerable pain. I did for years. I imagine I will again. This is not a post arguing that being in pain makes life terrible. Please do not use it for such nefarious nonsense.)

My experiences in the past few weeks have shown how profoundly wrong the assumed relationship between ability and a good life is. Yet it’s a presupposition that remains deeply ingrained and, among others, underpins so many of the ableist issues we face, from being seen as undatable (who wants to go out with someone whose life is crap?) to the dangers of assisted dying. On a more everyday level, it also underpins a lot of the failures in healthcare that disabled people frequently experience. If medical professionals are only ever interested in ‘improving’ ability, they often ignore the things that disabled people actually want help with, like pain or sleep issues or something entirely unrelated to their primary impairment.

It’s also behind the gross ways we think and talk about disabled kids. The comparisons with nondisabled milestones. The focus on doing things ‘normally’ rather than with ease. The hours spent at physio and speech and language therapy rather than just playing. The praise for fitting in rather than being yourself. Most of us who received these messages as kids spend our adult lives unpacking them, and yet parents and kids are still told that these are the ways to guarantee ‘quality of life’. They are, decidedly, not.

You’ll notice that all through this essay, I have put the phrase ‘quality of life’ in quotation marks (scare quotes?). This is because, while it is a useful shorthand and I do obviously think there are things that can improve or worsen the experience of being alive, I think the concept as we conventionally understand it is… bullshit. For a start, it’s not something we can objectively measure. It certainly isn’t something we can decide about or for anyone else. It definitely isn’t defined or determined by all the things - ability, independence, ‘normality’ - that nondisabled society has decided it should be.

Yes, I am enjoying being in less pain. Yes, it has made my life better. Yes, I am grateful. No, I do not need to be ‘less disabled,’ ‘more able,’ or ‘more normal’ for any of that to be true. My ‘quality of life’ is, as ever, not up for debate.

Speak soon,

Lucy

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- Assuming responsibility

- What can she say except you’re welcome?

- Commercial fatigue

- Guilt-based childcare upselling

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- Interview tickles

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- The greatest mystery about Helen Keller

- Deeply empty wisdom

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I’m positively tickled I get to conduct nine straight informational interviews this morning. Let’s look out into the waiting area.

“Okay, who do I have first? Is Jared here? Hi Jar—”

AH! That’s a… he’s got, that’s a white cane! But how… how did I miss this? He didn’t put that in his cover letter! But, but the differently abled always say that’s who they are in cover letters. I mean, it’s one piece of who they are. Did I just define someone by a single characteristic? Wow, Derek, get it together! What does that “verbal ecosystem” poster your new boss Kim hung in the break room say? “Words are seeds we plant that grow the workplace environment.” Root yourself in that mantra.

Oh no! He said hi and asked how I am. I’m shaking his hand. How long have I been doing that? Golly have I just been staring at his cane??? Quick, say something!

“I’m well, thank you. I’ll see you in now.”

See you in now?! Derek, where on earth is your lexical stewardship this morning? It’s like you didn’t even attend Kim’s Acoustics of Allyship workshop.

“So, Jared, tell me a little bit about yourself.”

Alright, while he talks, get a grip on yourself. Why did his sight loss startle you? Be brave. There’s no room for able-bodied fragility here. You have to look your toxic notions straight in the eye—look straight in the eye? Again, Derek?

I’m just going to admit it: I don’t know how blind people do jobs. Do I have to hire two people? Jared to have the job, and another person to, you know, do the job?

I almost threw up just thinking that! It’s like my stomach rejects intolerance!

How am I so unprepared for this?! Maybe Kim focuses a tad too much on “beautifying our linguistic landscaping,” and a smidge too little on workplace logistics? No, stop! Kim is helping. Why, she was the first person you heard say, “Every utterance is a micro-action co-curating a collective phonetic atmosphere.” Come to think of it, she’s the only person you’ve heard say that.

Oh, he stopped talking.

“Thank you for that answer. I honor it. Now let me take a look at—Ah! Sorry, I meant read—your resume here. Tell me about your time at Coca-Cola.”

Did Coke have to hire two people???

Ugh, shut up, Derek! Let’s break down the problem. What can blind people do? Um, just brainstorm. No bad ideas. Anything at all…

Wait, Stevie Wonder! And Ray Charles! So they can sing and play piano. Can the White ones?

What? Why would you think that? Besides, this company makes computer parts. We’re not hiring recording artists.

Come on, what else do they do? Um… Daredevil is probably not a realistic example. Oh! Helen Keller! She… what did she do?

You know what? This is just revealing your personal blind spots—OH MY GOD DEREK STOP! Personal ignorance. You meant to think ignorance. Obviously you can’t ask Jared what he’s capable of doing. It’s not his job to educate you. Also that would look really bad in a deposition.

Ah, he’s done with whatever he said.

“Sounds like that was really rewarding. Now tell me, where do you hear yourself in five years? … Sorry? Oh, I, well, I was trying not to say… where do you plan to be in five years.”

You need some sage wisdom here. What does Kim say? “When our values are our compass, empathy is our north star, and the wind of curiosity is at our sails, the moral course we chart will ripple throughout the world.”

Wait, uh-oh… Is Kim… full of crap?

Well, that is disappointing. At the risk of sounding crass, I’d even say it sucks. You’re just gonna have to think your own thoughts then, Derek. Yuck, I don’t like this at all. Okay, discrimination is bad, right? Jared can do whatever he wants, like anyone else. Yes, I won’t assume anything at all. I will offer him a job as a graphic designer. An office decorator. A driver!

Wait… wait a minute! Derek, you ding dong. The answer was staring right at you the whole time! Is “staring” okay to think? Oh, who gives a rat’s patooty? WOO! We’re gettin’ spicy!

You’re literally holding Jared’s resume. Read it! What he can do is right there. How did you not think of that? Unbelievable! I would smack you in the forehead if there wasn’t someone else here. Actually, he can’t see you. I am going to smack you!

“What? You heard that? Oh right, of course you could hear that. Uh, there was a fly in here. I completely missed it and hit myself. Yeah, ha-ha, I’m so blind.”

DAMN IT!

In today’s bonus episode:

- A Jilted spouse

- Disrespecting the flag, or… a flag

- Beating world-famous furniture with a stick

- Falling woefully short of taking life by the horns

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Cobb shucks it into the right field bleachers!

You can take Ernie to the banks!

Who hit that ball? Why, it’s the Iron Horse, of course!

He Mays, but Willie? He sure did!

Hank gave it a spank!

A big smackie from Jackie!

Don’t snooze-ial on Musial!

You’ll lose your house at the Bellagio, but you can bet on ol’ DiMaggio!

Williams blas-Ted that ball! It was bel-Ted! Rocke-Ted! (he often adds decima-Ted, devasta-Ted, annihila-Ted, oblitera-Ted, or catapul-Ted)

[Singing] Oh ya’ do the Yogi Pokey and you swing that bat around, that’s what it’s Berra-bout!

Put that pitcher’s head on Mickey’s Mantle!!

Harmon Killebrew is harmin’ and killin’ you!

Somebody call Jimmieth Century Foxx—We’ve got a big hit!

Yasss trzemski!

The Ruth, the Ruth, the Ruth is on fire!

Alt: The Great Bambino! Dagli un cappuccino!

Alt: [singing like Justin Bieber] And I was like Baby Baby Baby Ooooh!

Alt: Hummina hummina, awooga! What a Babe!

- The blind lead the blind… and momentarily forget who’s leading

- Networking while blind

- Why high-quality and super crappy representation are both important

- My profound and wholly original musings on the power of storytelling

Mentioned in the episode:

- Lone Wolves

- We Might Regret This

- Disposable Humanity

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- Structurally unsound Sprite buckets

- Shockingly useful bundles of sticks

- The origin story of the RhinoTech Premium Rhino Cane

- Sighted people dive for cover

Mentioned in the episode: Glass Eye Witness News

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One day when I was a kid, I was walking around one of the Orlando theme parks with my family. I don’t remember which. I was legally blind at the time but mostly had enough vision to get around, so I wasn’t using a white cane. It was crowded, but I was doing alright following my dad’s back through the throng with my mom and siblings somewhere behind to snag me if I lost track of him.

I was holding what could only be described as a bucket of Sprite. Cups in a size that only exists in theme parks and 7-Elevens because no one else has the sheer audacity to sell them. Worse, the cup was flimsy, and I was dangerously close to a lot of passersby. I had to be less than 10 at the time, so I hold my parents responsible for the exceedingly predictable accident that followed.

Laser-focused on my dad, I missed an older kid who was walking right at me without looking. We collided with the drink directly between us. The cup’s floppy sides immediately gave way, unleashing a tidal wave of Sprite.

The deluge only got the other kid. I don’t know how that was possible. I must have instinctively tilted it toward him. He yelled. Having no idea how to respond and not wanting to lose my dad, I just dropped the cup and kept moving.

As I passed the kid’s mom, she said, “Gosh, couldn’t you see him?”

“No,” I responded flatly and walked away.

Her question was reasonable. She had no way to know I didn’t see well. My response was not so reasonable, even if accurate.

It felt great, though. Very cathartic. I had almost the exact same interaction many more times over the cane-less, low-vision years before I started going completely blind. It got to the point where I would accidentally run into someone and hold my breath, hoping they would ask if I was blind just so I could blurt out, “A little, yeah!”

But as I lost vision, I ran into people more frequently. If I had to narrow down my decision to start using a cane to a single moment, it was the time in the first couple of weeks of college when I was walking on campus and got a hard bump on my shoulder. I stopped and turned, wanting to hear the question. But I heard nothing. The person wasn’t talking, but I heard no noises from them at all. No footsteps, no movement.

“Hello?”

Still nothing. Either I was unknowingly in a silent standoff with a stranger, or… I reached out my hand.

Yep, telephone pole. I bumped into a telephone pole. I had been eagerly anticipating making a snarky comment to a telephone pole. I looked around, hoping no one had seen, and went on my way, acting casual.

My mom called up a nonprofit that has provided training and services to blind people for over a century. At the time, it was called The Lighthouse. I had periodically worked with them since kindergarten, and they had always been helpful, despite the fact that there is maybe nothing in the world more useless to blind people than a lighthouse.

The instructor met me on campus. We introduced ourselves, and she pulled something short and clattery-sounding out of her bag. She handed it over and then explained my new white cane could break down into four smaller pieces and fold up for storage purposes.

“That’s a relief,” I said. “I didn’t think this bundle of sticks was going to help me very much.”

I heard no laughter. She kept talking and didn’t sound like she was smiling. No audible amusement of any kind.

“She seems fun,” I thought.

She showed me the basics of how to walk with a white cane, something that is now second nature, more or less like walking itself. Hand straight out in front, in the middle of your body. Grip like a flashlight, but point your index finger down the flat side of the handle. When you step with your left foot, sweep right, and vice versa.

When I tried the cane for the first time, she said my sweep was too wide. I shouldn’t go any farther than slightly past my shoulders. Being more compact would ensure I covered the width of my body without taking up too much space. She sounded quite serious about this. So, given how the previous attempt at levity went, I decided not to ask if I could ensure my total safety by waving the cane up and down and spinning in complete circles. My mom later told me I had made the same suggestion to the person who first tried to get me to use a cane in kindergarten. This shows growth. I had learned when to keep my thoughts to myself. The quality of the thoughts was unchanged, but the restraint was there (incidentally, there is a clear path over the years from this idea to the RhinoTech Premium Rhino Cane).

We roamed around campus until I got comfortable with the cane. Then it was time for stairs. Going down is easy: hold the cane at an angle such that it doesn’t bounce off the individual steps, but it will hit the ground at the bottom so you feel where the last step is. Going up, you hold the cane out in a way where it taps each individual stair. Then when you don’t feel a tap, use the cane as normal to see if you’re at the top or just on a landing.

This immediately solved two problems that developed as I lost sight. First, at the top of staircases, not knowing I was done climbing, I would often do a pointless high-step, and, losing a little balance, stomp my foot back down hard. Second, at the bottom, I would drop my body weight, expecting to descend another step. Then I had to strain to stop myself from sitting on the ground. In both scenarios, I’m sure you can imagine, I felt super cool and sexy.

The lesson ended after we covered crossing the street. This part was unnecessary. In my 18 years of getting around without the cane, I had only been hit by one car, and that was before anyone explained to me how to cross busy streets with low vision.

Here’s what happened: my dad dropped me off to wait for a haircut at the barbershop while he went to a store a few blocks away. But the haircut line was long, and I got tired of waiting. I decided to go find my dad. I was 11 and had been crossing residential streets alone for years. Sure, I was downtown, but how hard could it—BAM! One ambulance ride and several stitches later, I had a Lighthouse appointment to improve my street-crossing skills.

At the end of the first cane lesson, the instructor told me to explore on my own for a month or so, and she would come back to see how things were going. Those first couple of weeks were awkward, but I learned a lot. Like the average person’s reaction time. I had enough vision, at least in daylight, to watch the blurry figures of people coming toward me freeze in a panic about what to do, sometimes failing to make a decision until I was within a couple of yards and literally leaping out of the way. I could have moved, but what fun would that have been? I was visibly disabled for the first time in my life. It was quite an adjustment. I wasn’t going to deprive myself of fun.

The most incredible thing was watching entire crowds of people separate to make a path as they spotted me. My cane was the sidewalk equivalent of an ambulance siren, or Moses’ staff.

I got stabbed in the stomach a lot. The cane tip got caught on curbs, posts, rocks, cracks in the sidewalk, and a million other things. I often couldn’t stop my forward motion in time to avoid the handle jabbing me hard in the gut. I got one or two bruises.

The second lesson came, and the instructor showed me a way to flare my elbow out a bit so the cane would naturally move off to my side when this happened. It worked immediately.

“Wow,” I thought, “that should probably be in the first lesson.”

I found more ways to avoid this problem as I got further into the world of white cane design and usage. I eventually settled on a longer, lighter-weight cane with a rolling tip for constant contact with the ground and the ability to jump small cracks and dips. Nowadays, I’m rarely impaled.

There are many types of canes. Different materials of varying weights and sturdiness. Different tips you can swap out. Some for rolling, some for tapping the cane back and forth. Some made specifically for off-roading. There are rubber handles, foam handles, wood handles. There’s even a “no-jab” cane with suspension built into the handle. You can customize the color (I have a black cane for fancy occasions).

I never fully took anyone down with the cane, at least not while I had vision. As things deteriorated, that changed. But I can still count on two hands the number of sighted people who actually ate it, and I’m about six months away from the 20-year anniversary of getting that first white cane. Not bad, huh? Plus, of the people who went down, all but two were coming straight at me and, I assume, weren’t watching where they were going. So I’m not concerned about them. The other two I tripped from behind. I feel bad about those. One of them had just recently had a stroke, so his balance was already off. I know this because I see him on a regular basis. He works near my building. I apologized, and we’re on perfectly good terms. But he absolutely LOVES bringing it up. He recently told the story to my 3-year-old. I’m not living that one down.

I once heard an older man who had recently gone blind describe the white cane as a “tool of freedom.” The phrase stuck with me. It’s common for people becoming disabled—or in my case, becoming more disabled—to put off learning to use adaptive tools. Doing so acknowledges the need for the tool, which is the hard part. Denial can be gentler than freedom. Sure, you might dump a soda on the occasional child or get in a couple of arguments with posts, but at least you can put off feeling genuinely disabled a while longer.

Friends, this is lying to yourself, and I’m here to tell you the truth will set you free.

It might also slam a few pedestrians into the sidewalk. But we all have to pay a price for freedom.

More like this:

- Unceasing backpack larceny

- Big Pete the Pirate

- Drug-induced planetariums

- The world’s largest marketing meatball

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Today’s music is “Mountain Lion Drums” by Andre Louis

The podcast art and other blog graphics are by Will Cheung

Find me…

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- Hilarious eugenics

- DIY artificial insemination

- Laughing alone

- An extremely beef movie

come out to some of the Reel Abilities events between April 23 and 30 in NYC, or check out their streamed films and events.

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Under ordinary circumstances, I would shy away from writing about genetics and reproduction here.

I’m blind because of the treatment for retinal cancer I had as a child. The cancer resulted from a random genetic mutation, but the specific type of retinoblastoma I developed can be hereditary. Any child of mine has about a 45% chance of getting the disease. Fortunately, the treatment has progressed enormously since I was a baby. Children in the US nowadays, especially those whose parents know to look out for the cancer, nearly always survive, often with decent vision, occasionally 20/20.

Nevertheless, when my retinoblastoma doctor found out my wife was pregnant, it couldn’t have been a full minute before she started talking about prenatal genetic testing, and abortion. I wasn’t surprised. People often communicate in one way or another that disabled lives are not worth living. Do yourself a favor and don’t look up statistics about abortion after positive prenatal tests for conditions causing disabilities. You’ll get really sad, unless you’re quietly a bit of a Nazi.

So my work, light-hearted as it generally is, doesn’t feel like a great match for discussion of genetics and reproduction. Things get real dark real fast.

Which is why I’m so impressed by what I’m writing about today, the award-winning indie film Lone Wolves. It centers a woman choosing whether to attempt becoming pregnant with a distinct possibility of having a disabled child, while being charmingly goofy and making me crack up several times (even while sitting completely alone in my apartment). And it does all that from a powerfully empathetic and counter-cultural perspective. A huge thanks to the Reel Abilities Film Festival for hooking me up with an online viewing of the film with audio description (the additional audio track that narrates visual details for blind viewers) so I could write about it. It’s rare to access audio description ahead of a showing in the film world, even for big studio productions.

Light spoilers for Lone Wolves ahead, though many of the details are in the film’s trailer and marketing.

The film stars its co-writers, Matt Foss and the Tony-nominated Cora Vander Broek, as Ben and Fran, high school friends in their 40’s who haven’t seen each other in person for 20 years. The reason they’ve reconnected, and the movie’s premise, is that Fran wants to have a child, so she organized a DIY artificial insemination weekend retreat in their hometown of Toledo, Ohio. Ben is the donor.

The first half hour is the funniest. Fran has thoroughly planned each minute detail of the weekend. But her personality leans prim and reserved, so her discomfort is palpable as Ben receives voice and video messages explaining everything she has neatly laid out for him in his hotel room. Collection cups, sports drinks for rehydration, pornography, and more. She has a strict donation schedule over the 36-hour period they have together, and she seemingly can’t stop herself from discussing refractory periods.

But her plans run headlong into Ben. Her clumsy, oversharing, awkward friend’s anxieties, of both the social and performance variety, are powerful enough to throw into question his declaration on Fran’s medical forms that he has no relevant health conditions to disclose.

Foss and Vander Broek push their characters’ social uneasiness in these early beats hard, but without overselling. The two have a level of comedic chemistry that feels like they worked together for much longer than the movie’s extremely brief 15-day shoot. The result is comically heightened gracelessness that is a pleasure to watch.

As her plan falls apart in the face of Ben’s erectile woes, Fran nearly has a panic attack. She tries to regain a handle of the situation, first through gentle, accommodating encouragement, then through harsh rebuke. The panic and fixation on control are the primary way the movie implies Fran is neurodivergent, but the implications never become explicit.

Ben, on the other hand, slowly reveals several increasingly serious medical and mental health details that he has withheld: slow metabolism, difficulty with fine motor skills (hence the clumsiness), a family history of cancer, a bout of suicidal ideation, and a recent diagnosis of autism.

The last of those mirrors Foss’s own late-in-life autism diagnosis, which occurred in the middle of drafting the script. Lone Wolves’ director Ryan Cunningham says she recognized the signs and pointed Foss toward testing. Then they reworked the script to include a diagnosis for Ben. It was a great edit, not least because the way Ben unintentionally reveals this detail to Fran is laugh-out-loud funny.

Vander Broek’s performance is solid, particularly her portrayal of Fran’s fear. But she had less to work with in terms of writing than Foss. The reasons for Fran’s sometimes abrupt swings in attitude toward Ben can be hard to track, even though they drive most of the movie’s dramatic tension. This is easily Lone Wolves’ weakest aspect.

Foss’s performance of Ben is charming and thoughtful. The character is well-grounded in his past: his social and romantic misfires in high school (which include an overly involved prom-posal to Fran that she accepted and later took back), as well as his depression about the death of a loved one. While discussing grief, he explains how he found consolation and delivers probably the clearest articulation of the film’s central theme:

“There’s this privilege in learning that people you love the most, they may end up being the ones that cause you the most pain. You get to make this decision that acknowledges that to be open to the good, that the bad, or at least the hard, could be coming too.”

This is the challenge issued to Fran, gentle and humane as it is. Can she relinquish control, set aside the risk management, and embrace the odds of having a disabled child? Is what she loves about Ben—his compassion, creativity, and his understanding of her desire to start a family—more important to her than what is conventionally desirable in genetic make up?The questions are particularly interesting in light of Fran’s own neurodivergence. Is a world where people aren’t hesitant about having disabled children a more gracious place for her to exist? Does her own value hang in the balance of her choice? Fran never brings up economic concerns, which would of course further complicate these questions.

Witnessing someone take seriously the worth of disabled lives while processing these questions on screen was more than refreshing. It was affirming. A necessary reminder that efficiency and the avoidance of difficulty are not the sole basis for reproductive decision making. That we can value the entirety of life’s complexity. That disability is not always a deal breaker.

The fact that this happens throughout a jovial, bittersweet comedy is a testament to the thoughtfulness of Foss, Vander Broek, Cunningham, and the whole creative team. It’s also a reminder for writers like me that the right angle on even the darkest topics can help you find your way past the heaviness to the humanity.

Lone Wolves is showing at the Reel Abilities Film Festival in New York City this upcoming Thursday, April 23, and streaming for anyone in the tri-state area until May 5.

If you’re in New York, come out to some of the Reel Abilities events between April 23 and 30. They have an incredible lineup of disability-centered films and panels, and damn near every accommodation you can think of. They’ve carved out a pretty amazing space that it’s hard to find elsewhere. I’ll be at multiple events. Come say hi! And if you can’t make it, check out the slate of streamed films and events.

A thought experiment. Imagine a perfectly normal person named Greg who lives in the fictional comic book city of Metropolis. Greg is walking down the street and Superman descends from on high, landing right in front of him.

“Citizen,” he says, “I wish to commend you on your bravery.”

“Superman!” Greg shouts in surprise, “What an honor! But surely it is you who should be commended for bravery. Whatever have I done? I am a mere dental insurance salesperson.”

“No, citizen,” Superman replies, “You are most certainly brave. Not because you purvey policies to insure the wellness of your fellow humans’ teeth and gums, but because you walk about the streets as though your frailty and devastating physical vulnerabilities do not bother you in the slightest.”

“Oh well goodness, thank you for your kind words, Su—Wait, sorry, what?” Greg says, suddenly confused.

“Yes,” Superman explains, “You see, there is virtually nothing for me to fear walking down the street. My skin is impenetrable. My bones are unbreakable. Why, your dental insurances are of no use to me at all because my perfectly white smile would be unaffected even if it were the direct point of contact with a speeding car.”

“A car is going to hit your face?” Greg asks.

“Perhaps not, but I don’t need to fear it happening, as you do,” he responds.

“But I don’t fear a car hitting me while I’m just walking on a sidewalk. I’m not particularly worried about the penetrability of my skin either, or how breakable my bones are. I’m just going to buy a coffee,” says Greg.

“Truly remarkable,” Superman says as he smiles condescendingly. He shakes Greg’s hand vigorously and flies off. Greg stares into the sky, reevaluating how cool he thinks Superman is.

After this encounter, how would Greg feel? Would he suddenly develop a deep fear of his environment, as Superman imagines he should, or would he just think Superman is a bit weird?

Superman didn’t tell Greg anything new. He was already aware of his physical vulnerabilities. Superman put them in stark relief, but Greg has always lived with them. They are not something Greg thinks about regularly. They are just facts about his life.

There is nothing he can do about human frailty. Except maybe join a cult that promises immortality if he will pay the leader (who is the eternal God Quaizar trapped in the body of a guy named Rick) huge sums of money, move to his compound in Florida, and take his endangered leopards on their daily walk. At least they can’t kill him thanks to Quaizar’s Elixir of Power. But barring that, Greg’s life will not change in any meaningful way after his conversation with Superman, and he won’t feel any more or less brave.

Regular readers may sense where I’m going with this thought experiment. This is, after all, a place where I regularly write about my disability and how non-disabled people interact with it. So where I’m going is obviously this: I have a special discount if you want to start your own business selling Quaizar’s Elixir of Power. Just bring three friends to my seminar this evening.

Ha-ha, only joking (unless you’re interested). No, my point here is that I get called brave all the time, much the same way Superman called Greg brave. People have actually stopped me on the street to tell me how brave I am more times than I can count.

But to be brave, you first have to be afraid. No one will ever place their hand over their heart, give you a sincere look, and say, “You’re just so brave for eating that grape.” Because eating a grape is not scary. Similarly, Greg doesn’t feel brave for going outside without Superman’s powers because Greg doesn’t feel afraid of going outside without Superman’s powers.

When people tell me, “You’re so brave,” they’re really saying, “Blindness sounds scary.” I can sympathize. Most people don’t know how I do most everyday activities, and that level of unknown is unnerving. Or they don’t know where I get the energy and motivation to figure out how to do things in adaptive ways. And I suspect they have a sense that being disabled means facing discrimination. I can even empathize with their fear to some degree. If I imagine having disabilities in addition to blindness, I know it would be a ton of work to relearn how to live my life. It doesn’t sound fun.

But understanding sighted people’s fear of blindness doesn’t make me afraid of blindness. Blindness is still a fact of my life that I’ve lived comfortably with for many years.

I should clarify I’m talking about people who think the act of walking down the street blind is, on its own, scary. There are aspects of blindness that are legitimately frightening, mostly having to do with how people treat us. The reality of unemployment of blind workers due to discrimination is good reason for anxiety. The stories I hear from blind women about harassment and assault by sighted men are truly terrifying. But I’m talking about the apprehension of blindness per se.

Knowing the majority of people are afraid of blindness, when I know with absolute certainty that it feels perfectly normal, is, to put it mildly, odd. I live in a world full of Supermans who are fully convinced their misperceptions are both correct and reasonable. They mislabel their collective ignorance and fear of the unknown as common sense.

I’ve only found one way to process the strangeness of this reality. I have to lean into the following idea and make it a core belief I hold about the world:

Since the average person is terrified of my life, I will be skeptical of the average person’s fears.

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When someone says some experience they’ve never had is frightening, but it’s something other people live with every day, my reaction is usually, “I doubt it.” Maybe they can’t imagine someone’s disability or other life circumstance. Or some unfamiliar new group of people is moving into their neighborhood. They might be retelling stories they heard about Some city or country they’ve never spent real time in. Scary? I doubt it.

It’s not me being mean or dismissive. I just know at the end of that conversation, I’m going to walk away down the street with a white cane and no vision, which would also frighten them. To validate their fear would be to pretend that isn’t the case, to excise a huge portion of my life experience.

So you’re probably thinking the lesson here is simple. It’s to pay closer attention to the perspectives of marginalized people for wisdom that helps you holistically understand the world and approach unfamiliar experiences with a more open mind.

No. It’s to eat the free bagels in this Ramada conference room, hear my presentation, and buy $1500 worth of elixir. Whoever sells the most this month gets a Greyhound ticket to the Florida compound for a personal spiritual audit by Quaizar! Let me tell you how it changed my life!

Hey! Where are you going?

In today’s bonus episode:

- Rocking my little baby opponents to sleep

- The accidental angry upside down pin

- My daring, courageous victory over a kid who got an asthma attack and forfeited

- How to rid yourself of anxiety by quitting anything that makes you unc…

Read more

https://soccerexplainedpod.com/

In today’s bonus episode, which is free for everyone:

- Tiny blurry baseball guys

- Little Billy, the only Mets fan in school

- The world violently spins exactly one half circle

- Big honkin’ hockey

Music by Andre Louis

The podcast art and other blog graphics are by Will Cheung

Yankees audio clip from Major League Baseball, originally broadcast on WFAN New York. Retrieved from

2014 world cup clip from FIFA, retrieved from:

My freelancing website:

https://syhoekstra.com/

If you could watch footage of my day-to-day life around the end of 2014, it would not be uncommon to see me standing alone in a room, looking apprehensive, gripping an iPhone 6 like I was trying to snap it in half, staring at a dark screen, shaking the device violently, and, every now and then, yelling in fright.

Also, if you could watch that footage, where did you get it? Delete it right now.

But since you’re being a creeper, I’ll explain my behavior. I was playing a mobile game that had just come out called Audio Defense: Zombie Arena. It was an audio game, a video game without the video part. I wore headphones and the game created the setting through sound. I stood in the center of a gladiatorial stadium and zombies came at me from every direction. As I tilted the phone left and right, the sounds they made in my headphones shifted. I had to get them dead center, and shoot. If I didn’t dispatch them quickly, they got closer and the sounds got louder. Eventually, when they got close enough, I heard my character’s heart pounding (that’s when the yelling usually happened). It was the game telling me the zombies were in range for hand-to-hand combat and I could shake my phone to hit them with a golf club, or frying pan, or banjo (all real options).

There were fast zombies I could get rid of with a couple shots. There were colossal zombies that moved slowly, but killing them took unloading everything I had. There were zombies that whispered until they were right next to me, and then they started shrieking. There was a freaky laughing clown zombie with a chainsaw that ran back and forth instead of coming straight at me, the truest of nightmares.

The company that made the game was called Somethin’ Else. It was the advent of modern mobile gaming, and they saw an opportunity to carve out a niche in the market. The explosion in smart phones meant well over a billion people had hardware in their pocket that could download and run games. Audio games were much cheaper to make than video games of a similar quality. With 3D soundscapes, Somethin’ Else created novel audio worlds, which for me amounted to virtual reality. They had some encouraging success, got some media attention, and their games’ voice casts included Sean Bean and Benedict Cumberbatch.

Since I grew up with some vision that I lost slowly over time, there was a period of many years where I could play video games relatively well. Obviously games with less action, like Pokémon or Final Fantasy, were easier. But I was reasonably good at the Marios and Zeldas too. I had great hand-eye coordination, just not-so-great eyes. My reflexes, like parents, did the best they could with what they had.

But years before 2014, I lost any ability to play video games. So the possibility of games blind people could play that everyone else might be interested in was exciting. A chance to participate once again in the culture of gaming, albeit one small corner of the culture. I might be able to recapture the comradery of friends around a school cafeteria table talking about a Donkey Kong boss battle (until a nearby girl laughed, reminding us we were losers).

My optimism on this subject was partially due to the moment in history. 2014 was right in the middle of a thrilling time for blind people and tech. We first got access to iPhones in 2009, and enough of us bought them over the next few years that assistive technology developers were going wild creating new apps. Handheld computers with built-in cameras and an internet connection presented endless opportunity. For instance, we could point our phones at a piece of paper and have the words read out loud with reasonable accuracy, a feat that previously required desktop equipment and expensive software. Or we could get remote assistance for all kinds of tasks from hundreds of thousands of sighted volunteers at any time with video calls. The news was easier to read than ever, and the most important online conversations took place on text-centric social media sites like Reddit and Twitter. Third party apps for both of those platforms allowed blind people to consume content and post in fully-accessible, feature-rich environments unimaginable just a few years earlier.

Much of this was thanks to Apple’s commitment to making their devices and software accessible to screen readers (the programs blind people use to interact with computers via synthesized speech or Braille), and encouraging developers to do the same.

Earlier in 2014, at Apple’s annual shareholder meeting, CEO Tim Cook made it clear that the company’s work in accessibility was based in principle, not profit. An activist shareholder from a conservative think tank led an unsuccessful revolt among Apple’s owners because, he alleged, the company was sometimes pursuing goals which conflicted with the goal of making as much money as humanly possible. The man was chasing a lifelong dream of physically transforming into a cartoon parody of a conservative person. Cook responded indignantly to Cartoon Man, asserting that Apple has morals and values quite apart from generating revenue, thank you very much. He invoked blind people as an example. “When we work on making our devices accessible by the blind, I don’t consider the bloody ROI.” The blind community cheered (and chose not to speculate why the Alabama-born Cook decided in this moment to feign Britishness).

Given this mood, I thought, why not a big new mainstream category of audio games? Everything else in tech was becoming more inclusive. Maybe sighted people would have fun gaming from someone else’s perspective. Maybe they would even do it because inclusion itself is a worthy goal, like Cook said. Perhaps we were standing upon the precipice of a new era of accessibility. Perchance the world we had always dreamed of was being born, guided by the benevolent midwifery of Silicon Valley. Could it be? Were we facing the dawning of a thousand beautiful, utopian tomorrows?

Ha-ha, no.

Somethin’ Else put out four or five games before ceasing all development at the end of 2015. Sighted gamers just didn’t care that much about audio games. Certainly not enough to pay the salaries of Ned Stark and Dr. Strange.

At the end of the day, sighted people have a hard time interacting with a screen that doesn’t have anything pretty or shiny on it. I can’t say I blame them. It feels wrong. There are videos and podcasts, TV and radio. Screens are for watching and headphones are for listening. Audio games ask us to use a screen but only listen. That’s fine with me. I use everything to listen. There’s no distinction. Podcasts compete with TV shows for my attention. It’s all just an audio track from a phone in my pocket. Sighted people are not used to blurring those lines. Why would they be? It’s nice to look at things. I remember that. I should have foreseen their preference.

I also should have expected the subsequent behavior of big, for-profit tech firms, whose goals are a little closer to Cartoon Man’s than they might have you believe. Twitter and Reddit eviscerated all the third-party apps that blind people loved because they didn’t show the platforms’ ads. And then, of course, along came a conspiracy-theory-spouting space fascist who grew up with all the privilege and comfort apartheid money could buy. He took over Twitter and immediately fired the entire accessibility team to reduce costs. Twitter is a flaming garbage pit now. Not just because Musk flooded it with bots, Nazis, AI slop, and porn, but also because it’s far less useable with screen readers.

Moreover, someone eventually pointed out to me that Apple’s accessibility commitment was something less than pure of heart. In the early 2000’s, third-party software developers stopped making screen readers for Apple. There weren’t enough blind people using Macs at the time to justify the investment. But school systems and governments were increasingly requiring computers they purchased to be accessible. If Apple wanted to remain a bidder for those lucrative contracts, they had to make their own built-in screen reader and commit to non-discrimination.

So it was, after all, about the bloody ROI, innit?

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The world of mobile audio games eventually settled into a sustainable pattern of producing low-budget mini-games played almost exclusively by blind people. Nothing remotely intricate or mainstream. Some completely blind gamers also enjoy word puzzle games, or titles in the style of old-fashioned text adventures. Not a whole lot else. For my money, the most interesting progress has been in existing mainstream games that have features making things easier on low-vision players who still have some useable vision.

Ultimately, this is fine with me. I miss gaming. But I would spend far too much of my life on games if I had more access. I once got really into a text adventure called Zombie Exodus (What is it with me and zombies?). Then I got an iOS update that made Siri suggest apps based on what apps I usually used in certain locations. The next morning, a notification popped up: “You’re at work, open Zombie Exodus?” In some alternative universe, there is a sighted Sy at a Games Anonymous meeting talking about surrendering to a higher power.

The hard part here, far from unique to the world of gaming or tech, was my realization that discrimination is so often the default. And its causes are diverse. Sometimes, the innocent and perfectly understandable desire of individual sighted gamers to play video games means the market for creative, high-quality audio games will just never be there. Sometimes it’s the insatiable greed of gargantuan corporate monstrosities. Either way, it’s pretty tough to change, unless you get the chance to regulate government contracts, or something similarly powerful. That’s often the disability experience. The world is what it is. When you get the chance to have some novel fun and blast some virtual-reality zombies to bits, you take it. You enjoy it, while it lasts.

Is this a happy note to end on? Not really. But you don’t deserve a happy ending. I haven’t forgotten how you’ve been surveilling me via video 24/7 for over a decade. Shame on you!