[Plura-list] Powered wheelchairs and Right to Repair

Wed Jun 8 11:16:31 EDT 2022

Read today's issue online at: https://pluralistic.net/2022/06/08/chair-ish/

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Today (Jun 8), I'm giving a talk at OpenJSWorld in Austin:

https://events.linuxfoundation.org/openjs-world/program/schedule/

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Today's links

* Powered wheelchairs and Right to Repair: An unprecedented legislative victory in Colorado.

* Hey look at this: Delights to delectate.

* This day in history: 2007, 2012, 2017, 2021

* Colophon: Recent publications, upcoming/recent appearances, current writing projects, current reading

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🚜 Powered wheelchairs and Right to Repair

Here's a miserable story with a mostly happy ending, one that leaves us with work to do, sure, but also with clarity on what to do next and how to do it. It's about Colorado's HB22-1031, "Consumer Right To Repair Powered Wheelchairs," which Governor Jared Polis signed into law last week:

https://leg.colorado.gov/bills/hb22-1031#:~:text=Concerning%20a%20requirement%20that%20a,repair%20the%20manufacturer%27s%20powered%20wheelchairs

Three million Americans rely on wheelchairs, and many of them use powered wheelchairs. A wheelchair is an amazing assistive device, one that can mean the difference between being stuck at home - or even in bed - and being able to work, go to school, shop, and see family and friends.

Even if you don't use a powered wheelchair, it won't surprise you to learn that they break. A lot. Anyone with a phone or a laptop - tech that travels with us out of the home, into the great and wild outdoors - knows that stuff you take with you into the world takes a lot of knocks.

But when it comes to powered wheelchairs, there are a lot of complicated - and frankly awful - structural factors that virtually guarantee that the chairs will get broken, and then getting them fixed is an incredible hassle. These structural factors are detailed in "Stranded," the US Public Interest Research Group's new report:

https://uspirgedfund.org/reports/usp/stranded

Stranded's foundation is 141 interviews US wheelchair users about their experiences with wheelchairs, which informs its commercial and legal analysis of the structural problems that underpin those experiences.

The report explains how Medicare narrowly interprets its statutory duties, allowing it to exclude outdoor powered wheelchairs from its program. That means that the majority of Americans who rely on powered wheelchairs have to use indoor wheelchairs, even when outdoors.

No wonder that these chairs break. A lot. As Mark Schmeler from U Pitt told Markian Hawryluk from *Kaiser Health News*, "It’s like you’re outside walking around all day with your slippers on."

https://khn.org/news/article/power-wheelchair-users-right-to-repair-law-no-easy-fix/

But it's not just a problem of fragile indoor chairs in a rugged outdoor world. The chairs aren't just indoor chairs, they're *bad* indoor chairs. That's down to Medicare's policy of using nationwide low bidders to supply chairs, which produced a winner-take-all duopoly where two private equity-backed manufacturers dominate.

These two companies - Numotion and National Seating and Mobility - have presided over a decline in the quality and durability of chairs, which means that the chairs they make break more often. Because these are PE-backed rollups - companies that used private equity capital and debt leverage to buy all their competitors - they need very high margins to meet investor expectations and cover their debts. That has resulted in deep cuts to the companies' service budgets.

Medicare also has a policy of not funding preventative maintenance and only replacing chairs every five years, which means that these fragile, undermaintained, badly made indoor chairs must last for half a decade. That's why 93% of respondents to the PIRG survey reported broken chairs in the previous year.

But also, the duopoly - whose anticompetitive mergers were waved through by the FTC - refuses to invest in repair, which is why 62% of repairs take 4+ weeks, while *40% take 7+ weeks*. That's 7 weeks of being stuck in your home - or even in your bed - while you wait for a technician to get your chair running again. Many of the people interviewed for Stranded can't wait, and continue to use broken chairs. Some of them were severely injured as a result.

Unsurprisingly, wheelchair users and their trusted technicians often end up fixing their own chairs. Fixing a flat tire - or even swapping the little skateboard wheel used to stabilize a chair with a heavy control unit and respirator - are not rocket science. Stranded quotes a wheelchair technician who works for the duopoly: "most repairs to wheelchairs are straightforward and don’t require specialized skills or training, just a familiarity with mechanical devices."

But there are deep structural impediments to independent powered wheelchair repair, impediments that are familiar from other #RightToRepair fights: parts, and DRM. As with mobile phones, tractors, cars, and appliances, parts for powered wheelchairs can be hard to source because the cartel that manufactures them refuses to make them available except to authorized technicians. As is the case with other repair monopolies - like Apple's authorized independent repair program - technicians are not allowed to keep parts in inventory, which means that nearly every repair includes a lengthy delay while parts are ordered and shipped.

Beyond parts, there are the problems of #DigitalRightsManagement (#DRM) in the chairs' electronics. As with GM cars, John Deere tractors, and Apple iPhones, access to these electronics is digitally restricted to authorized technicians with passwords and specialized hardware tokens. Under Section 1201 of the Digital Millennium Copyright Act (#DMCA), making tools to bypass these access controls is a felony carrying a maximum penalty of 5 years in prison and a $500,000 fine:

https://doctorow.medium.com/about-those-kill-switched-ukrainian-tractors-bc93f471b9c8

That means that wheelchair users and independent technicians can't access the diagnostic information from their own chairs, and when they swap in new components, they can't access the configuration tools to get them working, including changing a chair's grip parameters after changing to all-weather tires.

Powered wheelchair users need routine access to these electronics, just to tweak the settings of their chairs. For example, a wheelchair user who gains ability and confidence might want to change the delay settings for their control unit. One of the interview subjects in Stranded compares bad delay settings to "driving with bungee cords." Without access to their electronics, wheelchair users are at the mercy of the under-resourced, delay-prone official technicians, *and* at the mercy of Medicare's willingness to authorize payment for tuning this setting.

Now, finally, we come to Colorado's #HB221031, the new right to repair wheelchair laws. Like the model R2R laws that a coalition of monopolistic manufacturers have defeated time and again, in states across America, the law requires manufacturers to supply parts, manuals, and unlock codes to chair owners and independent technicians.

https://doctorow.medium.com/apples-cement-overshoes-329856288d13

Many of the commentators quoted in the *KHN* story and in Stranded make the point that making it easier to fix wheelchairs won't solve all the other problems - a monopolized chair manufacturing market, Medicare policies on preventative maintenance, outdoor chairs, and replacements, etc. They're right.

But this law *will make it easier for wheelchair users to repair the chairs they rely on.* It will free them from endless bureaucratic nightmares, from enforced immobility, from isolation from work and school and family and friends. It will remove a burden - a burden that impairs wheelchair users and their families from advocating for the structural fixes we need.

Right to repair laws have been defeated again and again in statehouses across America, thanks to the solidarity of monopolists, who have formed seemingly unbeatable coalitions devoted to ripping off their customers and destroying the planet with infinite mountains of e-waste.

But, as this bill shows, the anti-repair axis *can* be defeated. In Massachusetts, Bay Staters overwhelmingly voted in an automotive right to repair laws in a 2020 ballot measure. In New York, the governor just signed an unprecedented right to repair electronics law. And in Colorado, we have the first successful right to repair wheelchairs law.

These successes tell us what we need to do next: replicate New York's electronics repair law, Massachusetts' automotive repair law, and Colorado's wheelchair repair law in other states. Go from strength to strength, victory to victory, shattering the anti-repair axis by picking off its members, one at a time.

All of this will create the political will and the political space for realizing the promise of the FTC's landmark "Nixing the Fix" report:

https://pluralistic.net/2021/05/07/pro-act-class-war/#we-fixit

And Biden's *excellent* executive order on Right to Repair:

https://pluralistic.net/2021/07/10/unnixing-the-fix/#r2r-plus-plus

The anti-repair axis's lies - that only they can perform safe and effective repairs - grow thinner every day. The true motivation - extracting monopoly rents - grows more undeniable. As ever, rights for people with disability redound to all of us.

It's not that we're all merely "temporarily able-bodied" (as Liz Henry once memorably put it to me), either. Just as curb-cuts help people with strollers and bikes and grocery buggies, just as subtitles help language learners and people in noisy environments, protecting people with disabilities protects us all. That's why the activism of people with disabilities is activism that we benefits us all.

https://www.eff.org/deeplinks/2022/06/when-drm-comes-your-wheelchair

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🚜 Hey look at this

* Letter Boxing: A smart little two-player word game, with bluffing! https://crabfragmentlabs.com/letter-boxing (h/t Carol Monahan)

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🚜 This day in history

#15yrsago Publisher steals laptops, misundertands copyright https://archives.lessig.org/indexccb7.html?p=3393

#10yrsago Ray Bradbury’s original concept script for Epcot’s Spaceship Earth https://craphound.com/RAY_BRADBURY_ManAndHisSpaceshipEarth1977.pdf

#5yrsago Anthony Burgess’s lost, incomplete slang dictionary re-discovered https://www.theguardian.com/books/2017/jun/03/anthony-burgesss-lost-slang-dictionary-discovered

#5yrsago Security of America’s healthcare system is on the brink of catastrophic collapse https://www.phe.gov/Preparedness/planning/CyberTF/Documents/report2017.pdf

#1yrago Google and France agree on ad-tech interop https://pluralistic.net/2021/06/08/leona-helmsley-was-a-pioneer/#monkeys-paw

#1yrago Billionaires don't pay tax https://pluralistic.net/2021/06/08/leona-helmsley-was-a-pioneer/#eat-the-rich

#1yrago Apple's manorial security https://pluralistic.net/2021/06/08/leona-helmsley-was-a-pioneer/#manorialism

#1yrago Rabbits: PK Dick meets Qanon https://pluralistic.net/2021/06/08/leona-helmsley-was-a-pioneer/#rabbits

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🚜 Colophon

Today's top sources:

Currently writing:

* Some Men Rob You With a Fountain Pen, a Martin Hench noir thriller novel about the prison-tech industry. Yesterday's progress: 516 words (12954 words total)

* The Internet Con: How to Seize the Means of Computation, a nonfiction book about interoperability for Verso. Yesterday's progress: 530 words (9468 words total)

* Picks and Shovels, a Martin Hench noir thriller about the heroic era of the PC. (92849 words total) - ON PAUSE

* A Little Brother short story about DIY insulin PLANNING

* Vigilant, Little Brother short story about remote invigilation. FIRST DRAFT COMPLETE, WAITING FOR EXPERT REVIEW

* Moral Hazard, a short story for MIT Tech Review's 12 Tomorrows. FIRST DRAFT COMPLETE, ACCEPTED FOR PUBLICATION

* Spill, a Little Brother short story about pipeline protests. FINAL DRAFT COMPLETE

* A post-GND utopian novel, "The Lost Cause."  FINISHED

* A cyberpunk noir thriller novel, "Red Team Blues."  FINISHED

Currently reading: Analogia by George Dyson.

Latest podcast: Against Cozy Catastrophies https://craphound.com/news/2022/06/05/against-cozy-catastrophies/

Upcoming appearances:

* OpenJSWorld (Austin), Jun 8
https://events.linuxfoundation.org/openjs-world/program/schedule/

* UK Competition and Markets Authority Data Technology and Analytics conference (London), Jun 15-16
https://www.eventbrite.co.uk/e/cma-data-technology-and-analytics-conference-2022-registration-308678625077

* A New HOPE (NYC), Jul 24
https://www.hope.net/

Recent appearances:

* The Sci-Fi Feedback Loop: Mapping Fiction’s Influence on Real-World Tech
https://csi.asu.edu/calendar/events/the-sci-fi-feedback-loop-mapping-fictions-influence-on-real-world-tech/

* Privacy is the New Celebrity
https://www.buzzsprout.com/1806101/10643084

* Revolutionizing Activism — The Power of Utopia (Center for Artistic Activism)
https://www.youtube.com/watch?v=8TBlSc3PNUA

Latest book:

* "Attack Surface": The third Little Brother novel, a standalone technothriller for adults. The *Washington Post* called it "a political cyberthriller, vigorous, bold and savvy about the limits of revolution and resistance." Order signed, personalized copies from Dark Delicacies https://www.darkdel.com/store/p1840/Available_Now%3A_Attack_Surface.html

* "How to Destroy Surveillance Capitalism": an anti-monopoly pamphlet analyzing the true harms of surveillance capitalism and proposing a solution. https://onezero.medium.com/how-to-destroy-surveillance-capitalism-8135e6744d59 (print edition: https://bookshop.org/books/how-to-destroy-surveillance-capitalism/9781736205907) (signed copies: https://www.darkdel.com/store/p2024/Available_Now%3A__How_to_Destroy_Surveillance_Capitalism.html)

* "Little Brother/Homeland": A reissue omnibus edition with a new introduction by Edward Snowden: https://us.macmillan.com/books/9781250774583; personalized/signed copies here: https://www.darkdel.com/store/p1750/July%3A__Little_Brother_%26_Homeland.html

* "Poesy the Monster Slayer" a picture book about monsters, bedtime, gender, and kicking ass. Order here: https://us.macmillan.com/books/9781626723627. Get a personalized, signed copy here: https://www.darkdel.com/store/p1562/_Poesy_the_Monster_Slayer.html.

Upcoming books:

* Chokepoint Capitalism: How to Beat Big Tech, Tame Big Content, and Get Artists Paid, with Rebecca Giblin, nonfiction/business/politics, Beacon Press, September 2022

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