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Category: powerchairs

Tune Up Tuesday at the DCC

Our March Tune Up was at the Disability Cultural Center in SF. Now that we have a regular monthly cadence for these events, I printed and distributed flyers to pass out on the street.

overhead shot of liz on the floor with the manual chair and its stuck wheel, empty powerchair in foreground

I learned some things from my stroll down Mission from 24th Street BART station to 16th, talking with every wheelchair user I met along the way. Everyone needs maintenance on their chairs. Everyone’s front casters are shot. They rarely have their own tools. I found that if I exchanged contact info with people i talked with, then remind them about the Tune Up event, they are more likely to show up. When people got their equipment from donations, they are not likely to know where to go for maintenance.

On the day of the event I also canvassed Civic Center and UN Plazas. The result of that was several guys in powerchairs following me back to the DCC and one arriving a bit later. I had the feeling like we were a powerful brigade of little tanks rolling together in the sunny and beautiful day!

We ended up with 12 participants, I passed out toolkits to 11 of them, and we spent the next three hours hanging out, chatting, having snacks, and trying to either fix issues, experiment with modifications, or make lists of deeper problems to address. Vince from ILRCSF, our actually experienced wheelchair tech, was great help and followed up with several people the next day for replacement front casters, new (donated) batteries, and other things. We all get to listen in as he calls vendors and manufacturers for information, learning from his approach. C. from last month’s Tune Up showed up — with her front casters replaced thanks to Vince!

A lot of hair and gunk was removed from wheels, all around!!!! I think we need an entire session for Hairball Day and compete to see who can collect the most disgusting combo of greasy, dirty, pet and human hair.

A side function of Hairball Day is that everyone learns the parts of the chair. Axle, caster, and most importantly… bearings. I now kind of compulsively nag total strangers to protect their bearings and to replace the end caps that should protect those bearings from water and grit.

One person who came with a very nice Ti Lite manual chair ended up with 4 of us on the floor trying to remove one of his quick release wheels. It was NOT quick and it was not releasing! The next move really would have been to bang it lightly with an actual sledgehammer, which we weren’t prepared for, and neither was the chair’s rider! This turned out to be his old chair. He has an “identical” new one but likes the old one better. Maybe this sounds funny to you, but I do the same thing. It feels just slightly wrong to use the new one when the old one still works and it’s more familiar. But in this case the solution really was, Please use your new chair, and bring the old one in to have a little spa day with the sledgehammer so that the quick release wheel (and maybe the entire axle assembly) can get replaced.

Vince Lopez bending over a stuck wheel with its owner bending over to see the problem, liz laughing a bit in background

I adjusted the brakes and other bits of someone’s tall rollator, and Emma from GOAT and volunteers from Streets Forward helped to adjust the center of gravity (CoG) of another manual chair.

woman wearing a mask with tools working on a manual wheelchair with its rider consulting

My flyers promised cup holders, but I forgot to bring them!

I need to organize a much better, and smaller, tool bag for myself to bring to events. I am eyeing the kind that open up and show everything neatly stashed away. It would be nice not to have my tools “explode” over all the surface area of our work space!

Community strength was coming through in our event. We had some quality snacks and free coffee and tea thanks to the DCC. (Maybe I’ll come through and make cookies next time!!!) We were loafing on the couches, hanging out in the pleasant patio among the plants, charging up our powerchairs and phones.

two men, friends from the plaza, sit on the patio recharging their powerchairs and phones

For many years I have noted that when I talk with a wheelchair user about maintenance and repair, it is very likely to elicit difficult stories. My own nightmares are often about my wheelchair going missing or breaking underneath me. The stories people tell of stress, fear, pain, frustration, loss of independence, loss of their own health as well as mobility, from their chairs breaking, are of deep trauma.

With that in mind, what we are doing is healing for us as people, we are healing our own relationship with our tech and making something scary and bad turn to, I can even use the words joy or celebration. We did not fix every problem that afternoon. But we paid attention, listened, took notes, and got the ball rolling. We took something that feels like an unpleasant and risky chore that is disempowering, and made it a little party that helped us all feel agency and power and friendship.

I hope everyone will come back! Our next event is April 7 at the DCC.

That kind of community and solidarity is what we want to build!!!

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Getting Andrei’s center mount control ready!

We are very excited that soon Andrei will have his new center mount joystick and other new accessories! We’re getting ready to get it to him and install it later this month!

It has been incredible working with Levan and Bruce and others from Easy Does It Services, who along with Olga have done the bulk of the work here. Along the way, we got fantastic extra help, advice, and supplies from many people — occupational therapy and seating / positioning consultation from Judi Rogers, advice and solidarity from Rose Acampora, masterful phoning up of vendors by Vince Lopez from ILRCSF, and advice, supplies, and support from Morgan Kanninen and Ash from CIL. The collaboration between all of us has been really a joy.

And it is thanks to your donations, that we’re able to do this, GOAT supporters! Thank you very much!

By the end of the month we should be able to post about Andrei enjoying the spring and having a walk with his dog. I would like everyone reading this to appreciate, if they can, the simple freedom of going out side by yourself and choosing your destination, going at your own pace. It is a good feeling.

view of the mounting hardware for a swing-away table on a powerchair

close up of the clear acrylic swing away tray and center mounted mini joystick

close up of mounting hardware

overall view of a powerchair with andrei's joystick installed for testing

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Sidewalk wheelchair repair job

You know how some people dream of their teeth falling out or realizing they have an exam they haven’t studied for and aren’t wearing any pants? My recurring nightmare is usually that I am traveling or at a conference or on a big campus somewhere, alone and a bit lost and my wheelchair either breaks or I realize it has just disappeared.

In these dreams, I am sitting on a sidewalk trying to figure out my next steps. I can walk a little, but only so far at one time and it is quite painful (like, maybe a block on a good day.) On my dream sidewalk I prepare to try and explain to strangers, in a language that I don’t speak, how I got there, that my wheelchair has gone AWOL, and what I need. Mercifully I also am one of those people who realize they’re dreaming, take control of it, and “lucid dream” or simply force myself to wake up.

Let me set the scene for you! It was a beautiful sunny day yesterday in San Francisco. I was on my way to do some errands yesterday and meet my son for lunch, looking forward to my little cruise around Noe Valley which has some cute shops and a Whole Foods. The bus stopped at my corner and the ramp was lowering. Beep beep beeeeeep beep, you know the drill! Then the heart stopping moment where my powerchair would not turn on. It threw an error. Yikes!!! I called out to the bus driver to ask him to wait. Restarted. Same error and then it shut off. More explanations as I beg the bus driver to wait for me to figure things out.

I tried taking my battery out, which is pretty easy for me to do but which was complicated my backpack and a big shopping bag hanging off the back of my chair. That didn’t help. A lady next to me who had her kid in a stroller offered help. I ended up putting the chair into neutral, and asked her for a push down the bus ramp. (Actually she started pushing me while I was still taking off the 2nd rear wheel lever which spun me around and kind of pinched my hand, but good intentions…) Victory, I was on the sidewalk and the bus was able to pull away.

a narrow cracked sidewalk with a stop sign (in spanish) pole blocking passage for wheelchairs

At leisure now, I could consider my options.

A) Call my partner or friends for help. My chair (a Whill Ci from 2018) is fairly easy to break down into three pieces plus the under-seat basket. They could load me and the chair into a cab.

B) The same, but I try to do it myself, maybe with the help of a random kind stranger or a hopefully willing Lyft driver. This is more difficult. Drivers likely to refuse.

C) Call a wheelchair van via Waymo, Fog City, or Uber. The Waymo and Fog City ones are cheaper. I would put the chair back into neutral and ask for a push up the ramp into the van and then get help once I was home. Complication, requires cooperation from driver.

D) Wait for my son, do our bank errand by him pushing me half a block to the bank, then try to get home via A or C with his help though he was busy with some important errands of his own.

None of those sounded great to me.

E) Text or call ILRCSF’s mobile rescue
F) Try and fix it myself

I went for those options, texting Vince that I don’t YET need rescue but I might within the hour.

Onward to beautiful, GOAT-like, Option F! Take all the million bags and backpack off the chair. Disassemble the chair. I am now sitting in a heap of bags, my walking cane, and wheelchair parts, and my TRUSTY GOAT FIX IT KIT toolbag!!!

And I’m googling “error code 00, whill ci”! Ok, check the electrical contacts, maybe it is the battery, I take out the battery and spit shine the metal a bit with the rag from my Fix It Kit. The battery housing also has two things that look kind of like spark plugs which can go out of whack, so I wiggled them around to teach them a lesson. Taking off the joystick controller on the chair arm sucks so I just wiggled it firmly hoping that would suffice if something inside was loose.

The problem turned out to be the point where the chair I sit in mounts on the seat pole. That has to be easy to take apart, but also, it’s where the electrical contact between the joystick and motor controller, and the battery and motor, lives! That thing is very oddly designed, kind of floating around not anchored to anything. I remembered suddenly that years ago it had problems which I fixed with some foam mounting tape. I unscrewed the housing of it with my HANDY GOAT FIX IT KIT SCREW DRIVER and stuffed a bunch of gaffer tape from YOU KNOW WHERE underneath the electrical contact. Then put everything together again.

Miraculously this worked and I was able to go about my day and also got to text Vince that I fixed it myself.

Interdependence is great, but sometimes I am so happy not to have to invoke it.

Brunch with my son was lovely. I had banana mascarpone pancakes with marshmallow fluff and bacon on the side.

Donate to GOAT today! $20 can fund a really good wheelchair toolkit that we will give to other wheelchair users for free, at our workshops and on the street to people we meet in our outreach rolls!

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An update on Andrei’s powerchair

Last fall, GOAT started collaborating with Andrei, a wheelchair user in Moldova, to help out with his Permobil F5 joystick issues. Here’s an update! We have ended up in a more long term collaboration between Easy Does It Services, ILRCSF, occupational therapist Judi Rogers, and the CIL in Berkeley to get the necessary equipment and expertise so he can get outside this spring. It has been really delightful getting to know Andrei and working with everyone!

screenshot of a zoom meeting with Andrei and family, Olga, and Liz

While Andrei’s fluency in English is great, we end up with our meetings half in Russian and half in English since Levan and Olga both also speak Russian. I turn on Google Translate in my phone to get near-instant written translation of the meeting. I have even learned a few Russian words though they are the bare minimum of what you might absorb easily: Yes, No, OK (horosho) and Thanks!

Levan from EDI and Olga are doing a ton of work to provide Andrei with several different options to control his powerchair and also to give him some flexible options for game and computer control that are less dependent on hand strength and dexterity. This includes chin, head, and attendant controls as well as a mini joystick and new armrest/table, new batteries, more positioning / seating options, and all the stuff to mount these things onto the chair. Some of that is from scavenged or donated supplies and some is new (funded by YOU!)

Andrei already experiments with his computer control setup a lot, so I am always learning about new software from him. For example, he recommends Handy as free and open source software for speech to text. As a bonus it is very privacy protecting (and fast) as it doesn’t send your voice or text to the cloud, it works locally on your devices and is highly customizable.  He also talked a bit about VoiceBot, which sounds interesting, but is less free. And this device called a Razer Tartarus, extremely cool visually, which used to work well for him, but which now he needs to adapt in some way so that he can control it.

Bruce is always sending new ideas and contacting manufactorers for potential devices, like mouth control via the MouthPad , and others have stepped in to suggest drug therapies that can slow the progression of Andrei’s condition, something that will become possible if either Genentech opens a deal for compassionate therapy with his country, or if his dual citizenship with his father’s country comes through.

We have planned out Olga’s visit to Moldova, but have not yet pinned down a travel date. It should be pretty close, though. We are thinking if not before, then maybe in March just after we get back from the CSUN Assistive Technology conference.

Thank you for all your donations that are making this collaboration possible!

The point that comes through very strongly in this project ,as well as even our most casual workshop, is that THE TECHNOLOGY IS NOT ENOUGH. You can have the fanciest,  most expensive assistive tech in the world, and it means nothing if you don’t have expert help or advice in making it work for you — the role of occupational or rehab therapists.  AND, you need resources for maintenance, repair, spare parts, service manuals, and help to implement all of this, which is also something that can’t be done in one half hour encounter, you need to try things, iterate, and adjust in collaboration.

We all need a “pit crew” to keep us rolling!

 

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Tune Up Tuesdays: Feb. 17th at ILRCSF

a colorful zine and some tools coming out of a zippered pencil pouchGOAT is now co-hosting monthly wheelchair maintenance workshops along with Vince Lopez from ILRCSF!

Our first Tune Up Tuesday will be held at the ILRCSF office.

When: Tuesday, Feb. 17, 2:30pm – 4:30pm
Where: ILRCSF, 825 Howard St, San Francisco
Register: Contact Vince, 415-609-2555 or vincent@ilrcsf.org

We can inspect your mobility device together, talk about anything about your chair that is causing you trouble, do some basic maintenance, teach you preventative maintenance, and share free tools and materials.

Users of manual wheelchairs, powerchair, scooter, rollators, and other mobility equipment, and their friends and family, are welcome to drop by!

We can also help you to find the service manual and user manual for your own device, and get it to you in a paper or an electronic copy.

GOAT has free mini-toolkits to give out along with a short guide on San Francisco repair, DIY, and assistive tech resources!

A longer guide covering wheelchair repair in the larger San Francisco Bay Area is updated regularly by the Center for Independent Living’s tech staff.

We also often have free accessories like cargo nets, headlights, bags or pouches, and so on. And we’re happy to work with you to improve what you have now, so that it meets your needs.

Finally, if you are interested in learning wheelchair maintenance and repair, either to support yourself and friends, or as a possible career, come by and help out as a volunteer!

Our March Tune up Tuesday will be hosted at the Disability Cultural Center. We plan to host it there regularly!

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A Walk in the Park

Andrei hasn’t been outside in over a year. His secondhand powerchair needs a new micro joystick and other improvements, and that joystick will need new programming and a swiveling arm mount. From a chance contact on the r/wheelchairs Reddit forum, Grassroots Open Assistive Tech pulled together a team of disabled activists and experts who are working with Andrei to get refurbished, customized mobility gear to him in Moldova, along with an assistive tech expert to implement and test it.

Please donate to get Andrei back outside! He’d like to take his dog for a walk in the park!

Donations to GOAT this week will go towards Andrei’s project.

andrei, wheelchair user with dark hair, holding his dog Bobby

“After buying an electric wheelchair, my life changed dramatically. I felt a freedom I had never had before. I literally cried the first time I went outside. I was able to drive about 200-300 meters down the road. I was dizzy, but I was happy. I was no longer tied to the house and my room. Before that, I could only go out into our yard with its awkward slope and stand still, or 2-3 times a year I was taken along bad roads to the park or lake. I started going for daily walks with my mother, and then sometimes on my own. Those were probably the happiest years of my life.”
– Andrei

You can read Andrei’s full story in his own words along with more details about this project in a longer post: Let’s Get Andrei Rolling Again.

a man in a power wheelchair on the street, with a little dog riding in a backpack hanging behind him
Andrei providing taxi service for his dog, Bobby
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