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Author: Liz Henry

Free Webinar: Power wheelchairs and Right-to-Repair law in California

MARK YOUR CALENDARS!
December 12
2:00-3:00 PM, Pacific Time

The CIL’s partners at the DONetwork are proud to put on this educational webinar explaining the ins and outs of the new Power Wheelchair Right to Repair law in California.

Please register here: https://tinyurl.com/DOnetworkSB1384

The DOnetwork will be producing a public education webinar for SB 1384, the “powered wheelchair right to repair” bill, sponsored by Sen. Dodd. This legislation becomes law on January 1, and it has impacts that will increase the ability for independent repair shops and individuals to access parts and equipment to make repairs on powered wheelchairs.

Here’s an overview of what will be covered:

  • What SB 1384 means for the community, and how it will be implemented in California?
  • How is right to repair working in other states?
  • What are the next steps for pushing this issue in California?
  • Invited panelists include State Senator Bill Dodd, Capitol Staff Ana Vazquez, a representative from NCART – the association for providers of power chairs and complex rehab technology, and a consumer.

    a whill model ci powerchair up on a jack with the front wheel removed

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    Your ideas are intriguing to me, and I wish to subscribe to your newsletter

    We now have a newsletter! It is called GOAT Notes, and has a cute little logo of a cartoon goat holding up a paper scroll, having taken a bite out of the paper.

    You can subscribe to the newsletter for free, but there is also an option to donate to support the newsletter, and our organization, via Stripe, when you sign up.

    I have not decided on newsletter frequency. There may be a cadence of once per month, but with shorter updates for announcements of new events. Or, I could aim for a short update roughly once per week. Either way, a frequency between weekly and monthly seems likely.

    You can also read, share, or link to the back archives of GOAT Notes, someday when we have more than one issue!

    a cute cartoon goat holding a paper scroll that says GOAT Notes. there is a bite out of the top of the scroll for extra cuteness

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    Be Seen on Halloween: a workshop for DIY lights and safety mods

    In a collaboration between GOAT and San Francisco’s Independent Living Resource Center, we held a pilot workshop in downtown SF last month, where we provided lights, reflectors, reflective tape, and other useful modifications for mobility gear.

    This is a photo heavy post! Here’s me smiling to welcome you to this workshop:
    white non binary person with glasses and purple hair, smiling, wearing tshirt with wheelchair user with symbolic flames trailing behind them

    We hosted at ILRCSF, where Vince Lopez runs a free wheelchair repair program. There, SF residents can get maintenance and repair done on their tech – and if you get stuck at home or on the street with a broken chair, Vince will come out, fix the chair or get you to a safe place and take the chair for repairs. You can even borrow a loaner powerchair, scooter, or manual chair. Also from ILRCSF, Marisol Ferrante joined us, to show off the Nick Feldman assistive tech lending library, another great free resource.

    Vince displaying a walker with spiral LEDs:
    Vince, smiling latino man with a flat cap, holding a lit up walker

    We laid out all the gear that we bought to try out for the event, including reflectors and headlamps made for bicycles, reflective tape, and various kinds of LED strips; mounting clamps, straps, cable ties, gaffer tape, and portable usb battery packs.

    an array of small gadgets laid out on a tablecloth

    None of this is very “high tech” but having it all there together made a great introduction to thinking about ways to modify mobility gear. When you set out to do this, you have several issues in play:

    * DURABILITY: The mods need to be very durable for heavy use, or easily replaceable.
    * PINCH POINTS: You need to be aware of how your chair, scooter, walker, etc. fold or are put into storage or, say, a car trunk, so you avoid putting any fragile components onto “pinch points”.
    * ATTACHMENT POINTS: You need to consider ways to attach things to your gear. That may mean velcro or cable ties to a metal tube frame, or some other method of attachment. Clamps meant for motorcycles, bikes, or camera tripods often work well, but every wheelchair is different, and people also have different use patterns for them.
    * POWER: If you are dealing with electronics, as we were with light strips, you need a power source. I like external battery packs, because they are easy to attach to a frame, or put into a small pouch.
    * COST: Often, cheaper is better! It can be a tradeoff between durability and cost, though.
    * DIY-ability: You may need easy do-it-yourself solutions. Ideally we would have the resources of an auto body shop, and be able to cut and weld metal, but that isn’t always realistic!

    We had a blast setting people up with gear. Everyone had a try at installing their own equipment or working with people who came with them to get lights on their walkers and wheelchairs.

    Judy worked with me and her daughter to line the bottoms of her foot rest plates with twinkly christmas-light style LEDs. The LEDs also had a remote control so she could change their color. She also asked for two headlights pointing downwards from the footplate so that it would be easier for her to see curbs or bumps in the sidewalk.

    Part of the fun of working with other wheelchair users for me is always seeing how they have come up with their own solutions. Judy’s main hack was that she had dozens of rubber bands of all sizes around her powerchair arm. She used these to keep her phone in place on the wide arm, and then set up the remote control for the lights on the other arm of the chair. I am adding the deceptively simple (and cheap!) “plain old rubber bands” solution to my tool box!

    While we installed the lights I also noticed Judy’s foam insulation tape added to the rim of her footplates. If you have been in a powerchair user’s house you may have noticed some dents in the walls! And things like protective strips along corners that stick out, because a powerchair packs a lot of force even at low speeds. The easily replaceable, cheap foam strips are a great idea to save wear and tear on your walls and other people’s shins! But, Judy’s daughter mentioned they peel off and look kind of bad as well. I suggested narrow black gaffer tape wrapped around the foam and foot plates. It isn’t perfect, it won’t last forever, but it will look nicer and will make the foam last for a year or two instead of a month. To refresh it — just add more tape! Gaffer tape is more expensive than duct tape, but is flexible and will last much longer.


    Video description: an asian american lady in a powerchair, waving, and her daughter, posing with smiles as the lights under the chair’s footrests blink and glow.

    Deniz came with a travelscoot and a walker, and her own pit crew who were very enthusiastic helpers! They went for the lights, and installed COB (chip on board) LED strips along with a cable splitter and a battery pack on each device. The Y splitter means you can symmetrically install two light strips and plug them into one centrally located battery pack. Their install job was flawless!

    A smiling woman with a halloween party hat, sitting on a travelscoot, with two guys doing thumbs up behind her

    Bill tried out some lights of various kinds, including spoke reflectors for a manual chair. These spoke covers are small and fiddly and annoying to install, but they are also cheap and last a good long time. They also may pop off occasionally and need replacing, but I prefer that to having peeling or scraped up reflector tape making my spokes look all tattered. Bill did a few and got help with more, and then took a pack home to keep working on the project. I would like to find longer covers – they seem to come in this standard size of 3 inches and so you need multiple tubes per spoke. How much easier if they were longer! Let me know if you find a good source for these.

    manual chair wheel with small reflector tubes that pop on over each spoke

    A lady I met at the season opener for Philhamonia Baroque took my flyer and, fabulously, showed up with her husband and her very snazzy European style walker. She did a great job installing an LED strip set, and got a tuneup and some bolts replaced on her walker by Vince. I think that was true for others as well at the workshop.

    A lady smiling proudly as she shows off her newly illuminated walker with spiral light strips attached.

    Of course, one of the goals of our workshop was to let people know they can use ILRCSF’s free repair program! Marisol also led several people on tours of the Nick Feldman Lending Library where you can borrow all kinds of useful gear, try it out to see if you like it, or just keep it while you need it and return when your circumstances change. I have used this program in the past and it was incredibly helpful.

    We had so much lively discussion during the workshop. Gear reviews, complaints about what doesn’t make sense about either the DME industry, health issues and health care of course, Right to Repair laws now in play in California, and plain old brainstorming about future events. I was so pleased that everyone wanted MORE hands on, DIY events in the future!

    The whole event was a lot of fun. We had planned for 2 hours, but ended up staying for over 3 hours. I think next time we will try to get more helpers – because modding any assistive tech is so individual and needs individual attention, brainstorming, experimentation, and so on! And, we could try for an entire afternoon or spanning late afternoon and early evening.

    Some participants want to volunteer for our next event! That may be in December or January and will likely add some other category of modification — I’m thinking about pouches and cup holders as our next focus. They are simple, and everyone wants them, but figuring out what exactly will work for a person and their device is a complex process. It may end up being clamps like the motorcyle and bike ones we had for our Halloween workshop, or it can be something like fabric, leather, canvas, or even duct and gaffer tape along with velcro. Leather working tools can also be super useful in creating custom pouches and bags to attach to a chair!

    We will also be looking in future to host similar workshops in the East Bay jointly with the CIL and other organizations! Stay tuned!

    Here’s a few more photos:

    Me and Deniz in conversation,
    smling woman with halloween party hat, liz grinning, with wheelchair in flames tshirt

    Walker DIY in progress,
    walker diy in progress, a seated lady with silver hair bending over her walker and its light strips with cable ties in hand

    Judy and daughter,
    Two asian american women smiling, one seated in powerchair with lights attached

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    Common Tools conference

    Last month I joined some interesting thinkers at the Common Tools mini conference, invited to speak by Luis Felipe R. Murillo, as part of the SEEK Commons project.

    I talked a bit about GOAT and the problem space of assistive tech in the U.S. and around the world. Gear that we as disabled people need, such as wheelchairs as well as other AT is expensive, not easily maintainable or fixable. By gathering, publishing, and preserving DIY assistive tech, we can help people get (or make!) what they need. We can also make a dent in the problems of e-waste if we are able to repair our technology, and not throw away resources, for example, lithium batteries!

    Battery re-use was also a theme for Criptastic Hacker’s presentation on his wheelchair battery spot welder, which both uses something that would otherwise be thrown away, and can be used to for complex repairs!

    The conference asked: “How can we help each other make sense and respond to pressing socio-technical-and-environmental problems? Looking in our past and present we can find collaborative tools, approaches, and sociocultural practices to answer this question.” There were some presenters in person at Sudo Room maker and hacker space in Oakland, and some (like me) online since it was a hybrid event.

    Here are the abstracts from the event, and I’ll come back to add a link to the video recording, once it’s public!

    Paths to assistive technology: Repair & DIY, Right to Repair, and Reverse Engineering
    by Liz Henry

    There is a lot of home-grown wisdom in disabled communities about adapting or making “assistive tech” – things like wheelchair modifications, small devices that make life easier. And there are inventors—often disabled inventors—creating super complicated devices as well. There are also books, papers, and research with plans for DIY assistive tech. Grassroots Open Assistive Tech aims to collect, preserve, and propagate that info and encourage the use of open licensing to make ecosystems for building & sharing so that more people can get the adaptive equipment they need!

    Community Digital Territories: Baobáxia
    by Vince Tozzi

    “The idea comes from the Baobab, an African tree that lives for thousands of years and symbolically represents the collective memory of the territory. Baobáxia is the union of baobabs with galaxies. Galaxies of memories of community territories, on the Baobab Route, on the Path of the Stars..” Baobab is a network of mucuas, computers with free software, GNU/Linux, operating on the community network through the local Wi-Fi, even without internet. The mucuas host different galaxies of knowledge and digital applications such as collections, maps, blogs. All mocambolas can share their knowledge in the form of audio, videos, articles, documents, images, maps and soon much more. The knowledge of each mucua can be synchronized with the others, over the internet or on the local network through mobile mucuas. A mucua can be a very robust computer, like Madiba, which is located at the Community Data Center of the Tainã Cultural Center, or even a simple USB stick. This way, knowledge is maintained in our territories and shared on our networks. Baobáxia is created by Rede Mocambos, a collaboration between quilombolas, indigenous peoples, Nartisans, and artists from all over Brazil and beyond.

    The WBSW (Wheelchair Battery Spot Welder)
    by Criptastic Hacker

    An eco-soluton to reporposing batteries for useful projects! Every year, many thousands of large lead-acid batteries from wheelchairs are discarded to landfill because they don’t offer enough torque for the motors to push a human across city blocks, or even around the house. However, these batteries still have a lot of instantaneous JUICE to create— sparks! This project repurposes my old wheelchair batteries into a fully functional portable spot welder. With spot welding, you can repurpose EVEN MOAR by taking recycled laptop and car Li-ion and LifePo cells and creating new packs from them—for your DIY projects like robots, outdoor sound systems, and so much moar! It’s reporposing batteries to repurpose batteries. And since the materials used in batteries are some of the most toxic to our planet and have major health and worker rights issues around the materials mining for them, getting the most life out of them possible – and de-investing from that industry – is very good for both people and the planet.

    Resisting Contextual Collapse: How an Internet of Places (iPlaces) can help Field Stations and Marine Labs Operationalize FAIR and CARE Principles for Environmental Sustainability and Social Justice
    by Erin Robinson & Neil Davies

    Research stations help scientists gather data at source and witness the resilience and fragility of our planet firsthand. Despite their role in understanding the complex physical, biogeochemical, ecological, social, and economic interactions that constitute place, station contributions and those of the local community often remain unrecognized. Metadata describing the samples/data they help originate is too easily stripped or lost as value is added downstream. To fight this “contextual collapse,” we present a new publishing platform (iPlaces) that empowers investigators to publish descriptions of their field projects (marker papers) in a station journal, providing each project with a landing page and a digital object identifier. Through the familiar manuscript review process (with the station director acting as editor), iPlaces introduces a way to layer ethical, legal, social, and scientific metadata to field research. Part of a collaborative ecosystem, iPlaces links and leverages a suite of online services (e.g., GEOME, ORCID, DataCite, iSamples, Local Contexts), promoting their uptake in place-based research. In this talk, I will focus on our recent work with Local Contexts, where iPlaces enables a station to issue ‘notices’ for a proposed project, thus initiating dialogue with local communities and combatting “parachute science”. Communities can then issue ‘labels’, a form of social metadata (e.g., Prior Informed Consent), to projects and their downstream field samples/data, helping to operationalize CARE as well as FAIR data principles. As data and samples move downstream, value-added products are linked automatically through the global open science infrastructure, ensuring the connection back to place (the station and its associated communities). iPlaces thus positions stations as crucial partners connecting nature and communities to the global research enterprise, supporting scientific discovery and environmental stewardship in the service of people, places, and planet. (link to FAIR: https://fairisland.org/)

    Community Science Air Quality Monitoring for Environmental Justice
    by José Ramon Becerra Vera

    Open hardware and community science provide populations overburdened by pollution with the tools, knowledge, and data to advocate for environmental justice. Communities are often the first to notice pollution in their homes and neighborhoods. Yet, they are frequently excluded from scientific research that follows initial reports of smells, tastes, and health symptoms. This disconnect misses the opportunity to teach communities about pollution while neglecting local experiences that could help understand exposure, identify toxic sources and high concentrations, and contribute to environmental science. Implementing open technologies like DIY air monitors in community science can teach and empower participants as experts in instrumentation, data, and analysis and enable communities to explore research questions shaped by their unique experiences. Open hardware allows pollution-affected communities to harness their lived experiences, newly developed expertise and collected environmental data to drive meaningful environmental justice efforts.

    Air Quality
    by Eseibio Halliday aka “The Revolutionary Eseibio The Automatic

    Rap song written by Eseibio will be performed live to close the event.

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    California Right to Repair – SB 1384 Power wheelchairs – repair

    California SB 1384 passed and was just signed into law by the governor. This right to repair legislation is about powered wheelchairs in particular. In short:

    – The criteria have been broadened, or relaxed, for who qualifies as an independent repair shop for power wheelchairs;
    – “documentation, parts, embedded software, firmware, and tools used to inspect, diagnose, maintain, and repair the wheelchair” must be provided to “an owner or an independent repair provider for the purposes of providing service on the equipment”

    This is great news. It should be helpful for us (the disabled powerchair owners) to fix, or get our chairs, fixed as quickly as possible! Thanks to all the advocates out there who worked so hard to get this made into law.

    Honestly, it should also be great news for the wheelchair manufacturers. They now have extra incentives to plan and design for maintainability of their equipment. I hope they have been following along with the legislation and are prepared to do that. The result will be that their customers will be a lot happier!

    And I am loving the details in this bill about firmware and diagnostic tools – two things that I’d like to have for my own chair that have previously been refused to me by the manufacturer. It may be a battle over what they will hold back as a trade secret, but at least we have a starting point for that battle.

    It also includes:
    (1)Batteries.
    (2)Battery chargers.
    (3)Nonprogrammable joysticks.
    (4)Joystick housings or brackets.
    (5)Wheel assembly.
    (6)Nonpositioning accessories.
    (7)Antitip devices.
    (8)Armrests, excluding positioning components designed for adjustment by a therapist or assistive technology professional.
    (9)Caster spheres.
    (10)Cosmetic shrouding.
    (11)Floor mats.
    (12)Floor plates.
    (13)Nonpowered leg lowerers.

    Here’s the text of the bill: https://digitaldemocracy.calmatters.org/bills/ca_202320240sb1384

    And here is a PDF with some extra analysis from earlier this year: https://apcp.assembly.ca.gov/system/files/2024-06/sb-1384-dodd-apcp-analysis.pdf

    motor controller diagram for action arrow wheelchair
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