Hacking an ableist world
August 10, 2022 5:50 AM   Subscribe

HERE IS WHAT DOESN’T GO VIRAL: Ángel worked as a housepainter for decades but had a stroke three years ago that paralyzed the left side of his body. Now, his favorite spot is the recliner in his living room. From his perch, he can reach some essential items that he stores on a table to his right: a power screwdriver, painter’s tape, and a clipboard with paper and pen. ... Here is what does go viral: braille decoder rings, sign-language-translating gloves, “haptic footwear” for blind folks, stair-climbing wheelchairs. In other words, a preponderance of innovations, unveiled to great fanfare, that purport to solve disability-related problems. ... In contrast to what gets churned out in glossy promotional materials for corporations and tech start-ups, disabled people find creative ways to make their worlds accessible every day. Laura Mauldin writes on disability hacks for The Baffler.
posted by Bella Donna (31 comments total) 70 users marked this as a favorite
 
Oh man, my grandfather had this book of midcentury life hacks written by a blind guy that I read as a kid. Pretty much the only one I remember though was “just bite the toothpaste off the end of the tube instead of trying to balance it on the bristles.”
posted by DoctorFedora at 6:02 AM on August 10, 2022 [13 favorites]


FTFA:
The failure to see disabled people as creative, collective forces worthy of our attention means that they’re left to make life work in a way that’s mostly invisible. Recognizing the creativity of disabled people, including those aging into it, can move us away from stigmatizing and toward valuing all the ingenious adaptations disabled people create.
There are so many good ideas out there, and it's tragic that most caregivers need to re-invent the wheel on their own. We are all aging, and most of us stand to benefit from these clever adaptations someday. Why not make the "adaptation" the standard way??

Ranch houses are "old-fashioned" -- but they're wheelchair-accessible with maybe only adding a ramp! Not so the three-story McMansions...

Round doorknobs require more dexterity and hand strength to open than lever handles -- let's promote use of the ones that more people can use.
posted by wenestvedt at 6:22 AM on August 10, 2022 [22 favorites]


Round doorknobs require more dexterity and hand strength to open than lever handles -- let's promote use of the ones that more people can use.

I'm not sure about other places, but I know Vancouver requires these in all new builds as part of the building code. They skipped right over promoting them and just made them mandatory.
posted by jacquilynne at 6:37 AM on August 10, 2022 [14 favorites]


Wow, this article blew my mind. Thank you for sharing. I was especially struck by the reliance on Amazon to fill the gaps the medical/insurance companies can't or won't, and I will be mindful of my disdain for them because again, it's not all about me.
posted by Kitteh at 6:38 AM on August 10, 2022 [11 favorites]


Yup, I hate Amazon. And yet, it turns out to be a literal lifeline for many disabled folks and their caretakers at home. This is the part that leads up to what wenestvedt quoted above:

That Amazon has stepped into the breach to fill a role all but relinquished by the health care system is indicative of a broader failure of social provisioning in the United States. While Amazon and insurance companies report billions of dollars in revenue, and innovators fantasize about the augmented reality glasses that will “fix” deafness, caregivers and disabled people are left to crowdsource improvised hacks to navigate a world indifferent—if not outright hostile—to their actual needs and desires.

Sometimes I feel as though the world is not just hostile but actively hostile to the anyone who is not aged 35 or younger and able-bodied. I am not yet physically disabled but I am headed there. It was wonderful to discover that there is a wealth of hacks available. That doesn't solve the problem of how shitty basically everything is for people with disabilities. Still, the wisdom and creativity of folks living with disability is good to know about and worth sharing.
posted by Bella Donna at 6:51 AM on August 10, 2022 [23 favorites]


Ranch houses are "old-fashioned" -- but they're wheelchair-accessible with maybe only adding a ramp! Not so the three-story McMansions...

We owned an older house for a while that looked very charming but entering and leaving required going up and down stairs, internal doorways were narrow, and living there required going up and down between the first and second floors multiple times every day. Once we moved in, it was obvious how this wouldn't work if you had even a minor impact to your mobility like from an injury, aging, or a progressive disease, and there was no realistic way that house could have been modified to be more accessible. (And, it was embarrassing to have to preface an invitation to someone with a discussion of how they and their chair could get moved inside, and to acknowledge that once they were inside, they would be limited to that part of the house.)

The article talks about this directly:

Unsurprisingly, developers did not subsequently go out of their way to build housing with the disabled in mind, and by 2011, less than 5 percent of the housing stock was accessible to those with “moderate mobility difficulties,” and less than 1 percent was accessible for wheelchair users, according to a report from the U.S. Department of Housing and Urban Development. Only about one-third of housing is modifiable, even though roughly a quarter of U.S. adults have a disability,

When we bought our current house, having it be on one level and at least basically accessible (with potential for later modifications for more universal design features) was one of the main criteria.
posted by Dip Flash at 6:57 AM on August 10, 2022 [10 favorites]


My grandfather had a stroke before I was born, so I never knew him before he lost most use of the left side of his body. I remember him trying out every possible gadget that would let him function one-handed. The simplest was just a nail through a wooden cutting board so he could put a roast on it and have it held in place while he carved.
posted by Karmakaze at 6:59 AM on August 10, 2022 [7 favorites]


If there is a need, there is a way.

I've purchased CPAP supplies off Amazon and/or through a vendor by mail order. You pay, it arrives a few days later. No paperwork. Trying to go through a medical supply company would take a lot longer unless you had good insurance and good vendors. Often, it's just easier to go through Amazon... or if you're uninsured medically.

I am waiting for websites that indexes these small "life hacks" like people hack Ikea Furniture. ;) I can imagine a small swing tray and/or magnets for the gentleman who had a stroke but still insists on working with his good hand, so he can take his tools with him, and so on. There must be a few, right?
posted by kschang at 7:07 AM on August 10, 2022 [9 favorites]


Amazon has a huge problem with knowingly selling counterfeit products. It is scary that folks are buying medical devices or anything else safety sensitive through them.
posted by mrgoldenbrown at 7:51 AM on August 10, 2022 [9 favorites]


I have a CPAP machine, too -- and it just sucks buying supplies through the DME provider. They are more expensive, they make you go through a human salesperson, and they call me (instead of letting me order online). And they are SO EXPENSIVE!

Yet they don't even offer the little fabric liners that prevent whistling( from air sneaking around the face mask) that wakes me up at night. A cottage industry has sprung up for accessories like this, or for the fleece cover for the air hose -- and the same incumbent DME doesn't even notice that this market exists.

It's all so exhausting....and I am fortunate to be able-bodied and have "good" insurance.
posted by wenestvedt at 7:54 AM on August 10, 2022 [16 favorites]


A while ago there was an article, I think in the blue, about custom 3d-printed prosthetics in which a young woman observed that the main usefulness of her shiny new robot hand was that when she had it on, people stopped trying to “help” her, an experience she described as patronizing and demeaning.

I think about that a lot. And I’ve tried to bring it to my job, particularly when we’re talking aboard outreach efforts, partnerships, anywhere there’s a relationship and a power dynamic in play. It’s a really easy trap to fall into - building things is empowering and fun, listening to people with lives and needs and stories and human failings is really difficult. So I have to remind myself that a success is never “I feel like I helped”, it’s “actual helping took place”, and I need to really dig into understanding what that means.
posted by mhoye at 8:00 AM on August 10, 2022 [19 favorites]


Gets at a problem I have with engineering and tech, which is people devising novel widgets and then hunting about for novel use cases, without ever asking anyone what they need or gaining any domain expertise. It's way easier than taking a problem- first approach because you're not constrained by people and their icky needs, and if your widgets are cool people will back dumptrucks of money up to your door.
posted by klanawa at 8:07 AM on August 10, 2022 [19 favorites]


I use a power wheelchair, and I know a lot of other wheelchair users.

Quite regularly, someone invents a stair climbing wheelchair. It is invariably super expensive and super prone to breaking down.

And every time, wheelchair users sigh, roll their eyes and go "No! GIVE US RAMPS"
posted by carriage pulled by cassowaries at 8:15 AM on August 10, 2022 [57 favorites]


The article links to https://www.disabilityathome.org/ which is a useful compendium of approaches and products - thanks for posting this!
posted by brainwane at 8:42 AM on August 10, 2022 [7 favorites]


This has reminded me that the remodel we are about to embark on should have lever door handles instead of the oval knobs I selected.

Brb, gotta go choose levers.
posted by bilabial at 8:52 AM on August 10, 2022 [11 favorites]


I don't have personal lived experience of disability, but I did work for a charity that did its level best to develop low/mid-tech, low cost devices to assist with daily tasks faced by people with disabilities. The number of untested "great tech ideas" we got thrown at us was huge: indeed, politely turning down such submissions was enough work on its own.

With technology that is to assist a person, only the outcome matters. If it doesn't help, it's in the way. Custom fitting and testing is required with every person: there is not a solution that "scales". I developed massive respect for occupational therapists while I worked for the charity. I've spent most of my career with engineers who considered themselves highly practical, but none of them could compare to the resourcefulness and technical skills of the OTs I worked with.

Something I wish I could have preserved from that time were the lists (and sometimes websites) from local individuals and small groups who'd developed assistive technology that they'd made to help people in their families and communities. So many of these resources were abandoned (often as the lead worker had passed away or moved away) and risked being lost forever. The adaptive toy library developed at a local hospital and the well-thought out book of grips/lifts developed by a late woodworker for his son are two that spring to mind, but that's only from a small part of Canada.

(The website and project list for the charity, btw, is Makers Making Change. They're still going, but COVID-19 hit their operations hard and I was let go in March of last year.)
posted by scruss at 8:54 AM on August 10, 2022 [17 favorites]


This is a video of a series by my amazing aunt (who only has one arm) that was absolutely revelatory to me about pervasive built-in ableist assumptions.
posted by thandal at 8:55 AM on August 10, 2022 [15 favorites]


Related: this TikTok by @AbbeyCantWalk is a bitingly funny take on ableism in language.
posted by DirtyOldTown at 11:13 AM on August 10, 2022 [1 favorite]


So I have to remind myself that a success is never “I feel like I helped”, it’s “actual helping took place”, and I need to really dig into understanding what that means

"Help" that is unasked for, and either not-helpful, or actively harmful, is a major problem for Disabled people, and there are whole twitter tags around it like #JustAskDontGrab [started by Dr Amy Kavanagh @BlondeHistorian, Blind activist, freelancer, gamer & history PhD] which is about asking Blind people if they want/need help rather than just grabbing Blind strangers and manhandling them (which happens on a daily basis, and is dangerous, frightening, confusing) and also about not touching/grabbing wheelchair users or their wheelchairs without asking first unless its a genuine emergency.

Disabled people actually refer to not-helpful-help that is done performatively so the Abled person feels good about themselves and/or without asking the Disabled person what they need as "hlepy"

eg this [particular example] is someone being hlepy rather than actually helping, based on the very careful way they never actually say they've been asked to do this
posted by carriage pulled by cassowaries at 12:44 PM on August 10, 2022 [10 favorites]


One major problem many Disabled people face is people not believing Disabled people about their own needs, even tho Disabled people almost always know what they need much more than Abled laypeople know what Disabled people need.

For example, when plastic straw bans were enacted, many Disabled people explained that they genuinely needed bendable/positionable plastic straws in order to be able to drink safely, and that for a myriad of different reasons,

paper straws
glass straws
metal straws
reusable silicone straws

were not suitable substitutes for everyone.

And yet, whenever Disabled people tried to explain "I need this to drink safely and not aspirate fluid into my lungs, which can cause pneumonia or drowning"

there was a social media chorus from Abled people of "just use paper/metal/glass/silicone straws!" no matter how many times Disabled people provided diagrams and essays showing the problems with these alternatives for some people.
posted by carriage pulled by cassowaries at 12:55 PM on August 10, 2022 [25 favorites]


Oh, I have so much to say on this subject, but first I want to make it clear that I love technology. Captioning glasses, bring it on, I'm ready! But they've got to consult with me (seriously, I do loads of user testing and will happily try out your invention) and other people with disabilities while they're planning and developing them, or it will end up as an expensive piece of junk that will never find a market.

I was once testing a robot, and though the designers and engineers had clearly thought through many difficult problems in its design, it was mostly useful for bringing people stuff. And don't get me wrong, that can be incredibly useful for people who do not have the care that they need. But as I pointed out to the engineers, the robot could bring you a glass of water, but it couldn't help you once that glass of water had passed through your kidneys and you now had to go to the bathroom. Most disabled people would end up going with the time honored tradition of keeping a big container of water next to them throughout the day, and just have to hold it until someone arrives to help them in the bathroom. (God help you if that person showed up late, angry, drunk, or not at all.) And it's really difficult to find, and pay for, that kind of care. Now if they could design a robot capable of helping physically disabled people in the bathroom, why, then they might have something.

Not long after, I gave feedback on other potential robot designs for a different company. Those robot designs were for bodily moving people with disabilities, and it was a complete horror show. I cringed the whole way through it. There were at least two where I had to angrily explain to the engineers that if you moved a human being with osteoporosis like that, as most people in wheelchairs have, their femurs were going to snap. Your robot must NOT bend, fold, spindle, or mutilate its users!!
posted by Soliloquy at 2:06 PM on August 10, 2022 [20 favorites]


scruss: With technology that is to assist a person, only the outcome matters. If it doesn't help, it's in the way. Custom fitting and testing is required with every person: there is not a solution that "scales".

Conversely, regarding scalability (i.e., inaccessibility being VERY scalable), this recent piece on the history of screen readers put it this way:

Accessibility screw-ups, technological or not, are massively scalable. Take for example, how US dollar bills are identically sized for every denomination. Before smartphones, blind Americans would have had to carry around a separate — and costly — device just for identifying the bills, or otherwise place trust in every cashier they met. (Many other currencies use differently sized bills for exactly this reason). When systems don’t build in accessibility, the burden passes to individuals with disabilities to make up for it on their own, often by buying expensive technologies.
posted by mandolin conspiracy at 2:28 PM on August 10, 2022 [14 favorites]


Ranch houses are "old-fashioned" -- but they're wheelchair-accessible with maybe only adding a ramp! Not so the three-story McMansions

Amen. We just bought a brick ranch, and this was part of our reasoning. The original owners lived there into their 80s, and maybe we will, too. So much for sale in Atlanta now is 3 and 4 story townhouses. That roof deck won't seem so great when you're no longer able-bodied.
posted by hydropsyche at 4:15 PM on August 10, 2022 [5 favorites]


For anyone who makes decisions about funding or implementing disability accommodations: Can you book a 30-minute meeting with them, blindfold them and take them on a walk? Maybe have them try to buy a coffee?

Can you do the same exercise with them in a wheelchair? The blindfold is optional.
posted by bendy at 9:21 PM on August 10, 2022


For anyone who makes decisions about funding or implementing disability accommodations: Can you book a 30-minute meeting with them, blindfold them and take them on a walk? Maybe have them try to buy a coffee?

Can you do the same exercise with them in a wheelchair? The blindfold is optional.


No, and here are some reasons why:

Crip for a Day: The Unintended Negative Consequences of Disability Simulations

The Perils of Playing Blind: Problems with Blindness Simulation and a Better Way to Teach about Blindness

I Won't Pretend That Disability Simulation Works

How Disability Simulations Promote Damaging Stereotypes
posted by mandolin conspiracy at 9:50 PM on August 10, 2022 [18 favorites]


A friend of mine who is blind and uses a white cane is always fending off people who want to reinvent the cane for him. But it's a really robust, multi-purpose tool. Adding geolocation to it will add a little extra functionality, but at the cost of having to keep it dry, update its software, and a dozen other irritating limitations that a simple stick doesn't have. I can't find the article he usually sends people to explain why he prefers a low-tech solution, but this one is similar: Why is creating electronic canes so hard?
posted by harriet vane at 4:02 AM on August 11, 2022 [6 favorites]


mondolin_conspiracy, I wonder if the problem comes from abled people feeling unsure or uncomfortable about how to phrase such a request of a disabled person for their input? I mean, like white fragility that doesn't excuse it, just identifies it.

I would love to be part of a community that works with disabled folks about particular needs: as a "puzzle" it would be an interesting challenge today...and I fully expect to need accommodations myself.
posted by wenestvedt at 8:25 AM on August 11, 2022 [1 favorite]


Everybody wanted to make Covid masks with plastic windows so deaf people could lip read, and Nope. They fog up. They get gross rapidly. They do not perform the filtration needed to be effective as masks. I'm very hard of hearing. I am astonished at how many people who think they are not ableist simply will not do basic stuff so I can hear them. And who are pretty pissy about my inability to hear.
.Look at me when you speak, because sound travels better that way.
.Speak a little louder.
.Turn off background tvs, radios, etc.
.Don't talk with your hand in front of your mouth.
.Please, please, can we have captions on? They make a world of difference.
.Ask me. I'll tell you what works.

Hearing aids are useful and way better than they used to be, but do not correct hearing nearly as well as glasses correct vision. They amplify your voice, and also the wind in the trees. I have good hearing aids, but store and plane terminal announcements are mush. Stores and homes have electronic devices that make weird sounds that get amplified, and are hard for me to locate; if I can identify it, that helps me manage it, for some reason. I still never hear the throwaway jokes/asides, so I just smile.

Because people can't be bothered to take small efforts, deaf and hard-of-hearing people get isolated, and it sucks. The people in your life who seldom wear their hearings aids? Encourage them to check out newer devices that may function better, and be patient and encouraging.

Deafness still has dumb connotations. Ableism is persistent and widespread, and can be addressed by individuals who choose to educate themselves and take small efforts.
posted by theora55 at 10:31 AM on August 11, 2022 [11 favorites]


“I am astonished at how many people who think they are not ableist simply will not do basic stuff so I can hear them. And who are pretty pissy about my inability to hear.”.

My aunt is Deaf (but used hearing aids and later CI), and my grandmother (her mother) lost much of her hearing later in life.

Unfortunately, few of us in the family learned ASL. My mother, two years younger than my aunt, was an astonishingly rapid finger-speller. Their youngest sister, though, did learn ASL. But none of the rest of us did, I'm ashamed to say.

That said, I grew up taking it as a given that I always speak loudly, clearly, and with my mouth visible to my aunt. When my grandmother's hearing left, it was easy to use these habits with her, too.

What was always interesting — and frustrating — to me was getting this through the surprisingly thick heads of other people who came into my family's orbit, including my former spouse and other exes. It was always weirdly hard to get people to be aware of this and alter their speech accordingly. It's really puzzled me. People almost always learn, but it usually takes awhile.

“Because people can't be bothered to take small efforts, deaf and hard-of-hearing people get isolated, and it sucks.”

With a lifetime of experience with my aunt in social situations, I've found it's a very fine line I've learned to instinctively walk about this. In some social situations with mostly hearing people, it's unfortunately inevitable that she's going to miss some things and sometimes be isolated.

This not-infrequently works to her advantage: she can disengage from or ignore stuff as she prefers.

Otherwise, though, most of the time what I (and my mother, other aunt, and sister) tend to do is be attuned to whether and how much this is happening with my aunt and what her wishes appear to be. If she seems to want help being included, we fill-in and/or signal to other people to be more considerate.

She usually doesn't want — and doesn't want from allies — to become the center of attention if people are "forced" to accommodate and include her.

It's a really shitty negotiation all disabled people make — the cost of social discomfort when forcing people to make accomodations. Sometimes you don't want the hassle, sometimes you don't have the spoons. And while it's sometimes very helpful (and encouraging) to have an ally make a point to others about making accommodations, it can also too-easily be patronizing and disempowering.

This is why, as an ally, I always look first to discern my aunt's preferences to decide when to call people's attention to their lack of accomodation and this is what I prefer from allies myself.

I think what I most prefer from allies is teaching by example. In social settings outside my home, I always confront a number of barriers and if there's someone around who knows how to quitely help me surmount them, that's welcome. I don't want a spectacle, but I also wish that people would notice accomodations made by others and learn from them.

Unfortunately, my mother's hearing has been worsening these last few years and we've both been frustrated in learning to accommodate this. Partly, she didn't recognize it was happening or didn't want to, and she was certain for a while that everyone had just inexplicably started to mumble, particularly me. For my part, I've found that despite being disabled myself, it's been difficult for me to learn to make accomodations as my mother's hearing has waned and as she's begin showing early dementia. It's a mental block: I have an internal idea of who my mother is that seems to overpower who she actually is. This has been especially difficult with the dementia, for both of us.

With regard to the specific topic of the post and my own experience as a disabled person, it's very frustrating that the ableist world not only doesn't make accomodations, but also is resistant to my own "hacks" that I use to make my life livable. It's sort of adding insult to injury.
posted by Ivan Fyodorovich at 1:38 PM on August 12, 2022 [8 favorites]


Most of the people who work with disability accommodations professionally are empathetic such as this team www.askjan.org and have parallel frustrations with the lack of accessible design that creates barriers/difficulty/exclusion/dependence for people with disabilities. Low tech solutions are still solutions that support independent living and equal access.
posted by childofTethys at 5:51 AM on August 17, 2022 [3 favorites]


A friend of mine who is blind and uses a white cane is always fending off people who want to reinvent the cane for him. But it's a really robust, multi-purpose tool.

My husband has the same experience. Along with having to literally fend off people grabbing his cane and trying to wordlessly "guide" him by yanking on it.

But yeah, there's also a pile of people who, without consulting white cane users (or having the lived experience of being one) trot out various "innovations" that nobody asked for, and most of which are just based on weird assumptions about how a white cane is actually used as a tool by someone trained and skilled in its use.
posted by mandolin conspiracy at 6:27 PM on August 24, 2022 [3 favorites]


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