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.
“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.
Andrei providing taxi service for his dog, BobbyLeave a Comment
Recently, I showed up to the Easy Does It office along with Judi Rogers. I was looking for collaborators on a project with my organization, Grassroots Open Assistive Tech. And while I knew a little about EDI Executive Director Bruce Curtis’s, work and activism, I had never met him in person before.
“You might be wondering, why this particular guy in Moldova and his wheelchair…” I said diffidently to Bruce to kick off our meeting, figuring I would have to explain and justify this project.
“Doesn’t matter.“ Bruce said. “We don’t care! You’re talking with him. He needs the help. Let’s do it.”
Oh, my god! What a badass, and a kindred spirit. My friend Judi was laughing as she saw my delight at this 100% no bullshit attitude. This is something I deeply believe in as an activist: that we are here to do the work in front of us, whatever comes our way.
I’d like to tell a little of this story, and how we are working to get Andrei rolling and outside again!
Earlier this fall, I saw a Reddit post from a guy in Moldova, Andrei, who has a used, refurbished Permobil F5 powerchair. He was looking for low cost or DIY possibilities to help him change the joystick that controls his chair. I was impressed by his clear description of the situation, and his willingness to dive into whatever it would take technically to do this project.
On a power chair, with a default setup, you need to be able to push the joystick half an inch or so in every direction to control the chair’s motion and speed. Andrei, who has SMA, a progressive neuromuscular condition, recently lost much of the strength and mobility in his hand, and is not able to drive his chair at all.
With a micro joystick, controllable by very small movements of even one finger or thumb — like the control on some laptop keyboards – Andrei could leave the house again, walk his dog Bobby, and enjoy the outdoors.
However, changing the method for driving the chair requires the ability to reprogram the motor controller. Wheelchair manufacturers consider this proprietary technology, and only give out the tools and codes to reprogram a chair to their authorized vendors and their repair techs. The vendors and repair techs will only work on chairs that they sold you. This is part of why there is a legal battle all over the United States at the state and federal level for the Right to Repair.
A complex powerchair of the kind Andrei needs can easily cost 20 or 30 thousand dollars. This is part of why many disabled people are using donated, or secondhand market, chairs. When we need to modify these chairs to meet our changing needs, or fix them when they break, we are blocked by the proprietary tech and the limits on who is considered an “authorized repair person”. It is a familiar story to anyone with a complex wheelchair.
Added to these issues, Andrei is in Moldova, where occupational therapy and mobility tech are not easily available.
It became clear that Andrei needed more than a new joystick or a head or chin control. He needed consultation with expert advisors to figure out some options that might work, then, potentially help to reprogram his motor controller to work with those new parts, and help installing them.
Olga, Ian, and I, from GOAT, approached this problem by pulling together a coalition team to talk with Andrei. I asked Judi Rogers, Chair of the Board of the Center for Independent Living in Berkeley, for a recommendation of an occupational therapist specializing in seating and mobility who might talk with Andrei over video chat. She immediately volunteered to do it herself! We had a productive call with Andrei and Maria, helped out by translation by Olga and Levan, who both speak Russian.
Later, Bruce Curtis, Levan, and Rose from Easy Does It Emergency Services joined us along with Vincent Lopez from ILRCSF. We got Andrei and Maria to record a video of how Andrei transfers with his lift and have been able to improve his seating setup already. Rose who has the same condition as Andrei was able to give him a lot of advice and had great ideas for further support, and is working to get Andrei talking with Genentech about new medications and “compassionate use” free programs. We also have been chatting with Morgan Kanninen and John Benson from the CIL assistive tech and repair team for advice — and the CIL has kindly let us scout their warehouse for parts.
Now, we have a list of equipment that Levan and Vince are assembling and testing, and are making a plan to fly it out (along with a repair tech from GOAT!) to Andrei. Some of this equipment is scavenged, and some we will need to buy either used or new.
Some of the equipment we are assembling and testing:
– chin control for driving the chair
– micro joystick as a second option for a controller
– “attendant controls” for the back of the chair
– various swing-away mounting arms for the controllers
– cough assist vest, nebulizer, bipap (he will need to find medical help for it, but we could get him the equipment)
– variety of foam for seating and positioning
– tools for wheelchair maintenance
Together, we are creating a plan to get Andrei moving and independent.
We would like to ask your help to fund this plan!!!
Please donate today to GOAT! If you can donate through a corporate matching program, like Benevity, or Cybergrants/Front Door, that helps to increase the amount. We need to cover the expenses and plane fare for our traveling wheelchair repair tech as well as the equipment we can’t get for free.
These organizations are led by disabled people and were founded by disabled leadership and they all do great work. They grew from the powerful uprising of the disability rights movement in the 1970s in Berkeley, Oakland, and San Francisco. They are not run by religious organizations, or by the local, state, or federal government though they may get government grants. But these are fundamentally progressive activist organizations that are rooted in disabled community. That is very important to the work that they do! And they need community support.
Online meeting screen showing people from EDI, GOAT, ILRCSF, Andrei, and Maria
About working with Andrei, and conditions in Moldova
It has been good just getting to know Andrei and his mother. I have deep respect for them both. Andrei is engaging, a good writer and clear communicator, impressing me as smart and powerful, knowledgeable and determined. He is a bit blown away by knowing that half the people on this motley crew are fellow wheelchair users. We keep throwing links at him – watch Crip Camp! Here’s an article about disability rights! And as, stuck in his home without independent movement, he spends a lot of time online , he has now watched and read even more widely.
The only person who will help Andrei, for even the smallest tasks, is his mother Maria. And no one is helping her. This is not a community where your neighbor comes over to bring you a pie or lend you a screwdriver, much less a place to expect any sort of consideration for disability rights or justice, or a thought to care or even survival.
I had a little superficial knowledge of what disabled people faced in the former USSR, from reading Rúben Gallego’s memoir, White on Black, of growing up with cerebral palsy in rather horrible institutions. When Andrei told me a bit more about his life and his history of his family, I realized it was about a million times more challenging than I had imagined. Crushing poverty and the indifference of those around him meant that he and his late sister, who also had SMA, were prisoners in their own home and lucky to have a home at all. These are the conditions for his struggle for survival, for connection, education, contributing to society, and for happiness.
I want to let you read his story in his own words.
Andrei’s story
I was born in 1988, back in the Soviet Union, in the city of Lipcani. I was quite an active child. According to my mother, I loved to climb onto a chair and then onto the table. A couple of times, I got into trouble with teacups I encountered along the way, and I broke them. The first signs that something was wrong began at about one year and three months. I could crawl and stand on my feet, but I wasn’t able to take my first step. I crawled a lot and could only stand by holding on to something.
We visited many doctors in Moldova and Ukraine. At first, before I was two, I was diagnosed with flat feet. Then we visited a genetic institute in Kyiv, and I was diagnosed with Duchenne muscular dystrophy. My parents wanted more children, and doctors in Kyiv convinced them that if they had a girl, she would be completely healthy, so they took the risk again. And in 1994, my sister Ekaterina was born. At first, our joy knew no bounds. I really wanted to have a little sister, but at about seven months, my mother realized that she was starting to weaken. She couldn’t stand without help and got tired very quickly, but this was somewhat compensated for by her incredible cheerfulness and natural energy.
It was a difficult time. We had no electricity for several years, or if it came on, it was only for a couple of hours at night. There was no work. My father was unemployed, so my parents turned to farming to survive. We bought a cow and took five plots of land for vegetable gardens. But soon my father left for work in Kazakhstan, and then a year later, to Russia. My mother single-handedly cultivated all this land and looked after the cow.
As the eldest, I babysat my sister, rocking her when she was little, helping her get up when she fell. My father earned some seasonal work in Russia, and my mother looked after us here alone. It was incredibly difficult for her; society persecuted her for us being sick; people in their ignorance thought it was her fault. We were children who just wanted to go for walks, just to get out of the house, but it often happened that my mother could only take one wheelchair with her to take one of us for a walk. One day, she took us both and pushed one wheelchair about 20 meters, then the other. But I stayed home more and more often because my mother couldn’t keep up. She sold milk from our cow, and together with Katya, they delivered it for many years.
For a long time, we didn’t have our own place and lived with my grandfather, my father’s father. He loved strong drinks and smoking, and often kicked us out. In 2001, we bought a small house on a slope. While my grandfather’s house was on level ground, and I could navigate the yard in my wheelchair, albeit with difficulty, our new house had a steep slope. This move was a minor tragedy for me: I couldn’t do anything outside the house anymore, and because of the slope, I flipped over in my wheelchair several times.
At about 13, all my friends disappeared, they became ashamed to play with me, I became a recluse, immersed myself in studying, my sister and I were homeschooled, I liked studying, my favorite subjects were history and biology, and partially math until the 8th grade, until they changed my teachers, the new teacher knew nothing about it. I finished 9 years of high school, and I was faced with the fact that if I wanted to continue studying, I had to attend school in person, there was no one to take me there every morning and that was the end of my education.
Around 2005, they bought me my first computer, it was an Intel 386, it often broke down, my sister and I usually made schedules for each of us to sit at it for how long, at first we played old games like Mario, Dyna Blaster, she liked to play The Sims, also some project similar to Second Life, or maybe that was the game. I played Starcraft 2, Civilization, Heroes of Might and Magic, The Witcher, then around 2008 I got hooked on the Chinese MMORPG Perfect World, I made a lot of friends from different countries there and my first love, it was a girl from Russia from the city of Chelyabinsk, about 3000 km from us, she invited me to her place, we were both 19-20, but I could not admit to her that I was disabled, I was afraid that she would turn away from me, then she found a new job, met a guy there and I just decided to disappear from her life.
Then some kind of epidemic series came, my sister and I were very often and seriously ill with respiratory diseases, here and in Ukraine in 2009 there was an epidemic of swine flu, my sister suffered from pneumonia 10 times in a year, she was a real fighter and never gave up, our attending physician advised us that when we were especially ill, we were given oxygen from an ordinary construction cylinder, she was getting worse, we called an ambulance 4 days in a row, they did not want to help us, I asked the ambulance for an ambu bag for my sister, but they said that they did not have one, my mother and Katya went by ambulance to the intensive care unit and they drove 25 km in almost 2 hours, halfway there they stopped at a gas station to refuel, my mother said that in the ambulance (an old Soviet car that stank terribly of gasoline), and my sister suffocated in my mother’s arms, the ambulance never took her to the intensive care unit, this was on December 26, 2009.
My sister was very cheerful and strong; she was often bullied by her peers, but she never gave up. She always led an active lifestyle, even going to nightclubs.
After these events, I plunged into a long depression that lasted about 4-5 years. My mother became very ill. At 40, she developed arthritis/arthrosis; she literally couldn’t walk due to the stress; her nervous system couldn’t cope. During this whole time, my mother lifted me herself and even injured her back. We began looking for solutions because my mother couldn’t walk on her own, and we still had to lift me, and one of my mother’s friends helped us. She found an old mechanical lift and gave it to us; before that, my mother had lifted me manually for 28 years.
We asked my father, who was seasonally in Moscow, to find a lift, but he complained that he couldn’t find anything. Around 2015, he lost his job completely, and we returned to farming for a few years. Around 2019, my mother’s sister, who lives in France, took him there to work, and around 2020, he bought me my first wheelchair, an Optimus 2. Then he bought me an electric lift from there.
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. We’d walk in the evenings when my mother was finishing her chores. We managed to get her appointed as my social worker through the courts. The state took part of my pension and gave it to my mother as her salary, adding an extra 1,200 lei. One day, my mother had a relapse with her back; she literally couldn’t walk, so I went to the pharmacy to get her some medicine.
We didn’t have the conditions for me to be able to leave the house without any problems. Although we didn’t have high steps, we used a wooden flooring as a ramp, but it quickly fell into disrepair. My mother fell off it one late fall and broke her arm. It was a real tragedy. She couldn’t lift me up or fix me with one arm, but there was no one to ask for help. She lifted me with one hand, through terrible pain, using an electric lift. Then, a year later, I fell off this ramp and almost flipped over. It took superhuman effort for my mother to keep the wheelchair and me on two wheels. After that, we decided to add another room so that there would be no steps at all and I would have a smooth, free exit to the street.
My condition has been rapidly deteriorating over the past 2-3 years. I’ve had several close calls. The first time was a year ago, when I pulled out of my driveway and, since we live in a fairly hilly area, I couldn’t stop, and a truck was following me. I was seriously scared. I couldn’t stop, and the truck was behind me. I managed to pull over to the side of the road, and the wheelchair stopped, hitting rocks. The second time, I was with my mother, but due to the downward slope, my hand pressed the joystick all the way down, and I crashed into a car. There was another time when, again due to a steep slope, I couldn’t stop and crashed into an obstacle on the side of the road. That’s why I started looking for a different electric wheelchair, one with slope adjustment and a gyroscope. My rides on the Meyra Optimus 2 for the last year have been like this: my hand was placed on a homemade joystick, and my mother pushed my elbow from behind to move forward, as I don’t have the strength to do so.
My dog’s name is Bobby, I found him in the park where I often walk, 3 years ago, and I consider our meeting predetermined, I was sometimes very lonely walking alone, and you could say he found me, came up to me and started gnawing on the footrests of my wheelchair, I could not resist and asked several schoolgirls to catch him for me and put him in a backpack at the back of the wheelchair.
As for games, I’ve completed all of The Witcher games, Far Cry 3-4, Dark Souls 3, Resident Evil 3 remake, RDR2 partially, Kingdom Come Delivery partially, Fallout 4 partially, Crusader Kings 2, Xcom, I didn’t like Metro Exodus. I mostly like reading science fiction and fantasy. I used to read the Warhammer 40k series Dan Abnett, Dan Simmons Hyperion, The Terror, and Remarque’s Black Obelisk. The last one I read was Peter Watts’s Blindsight, which is 50% complete. I’m reading less and less because my eyes get tired. I also had memory problems after COVID, so I started playing chess to improve my memory.
As for movies, I love historical costume dramas. I also love sci-fi and documentaries. I watch Netflix series quite often. Usually on various topics, but also something historical. I already mentioned that I’m a bit of a chess fan because it’s good. It stimulates memory. Regarding neural networks, when the first local generative neural networks appeared, like Stable Diffusion and flux, I started studying them. Nothing serious, but it’s something between graphic design and machine learning. I studied LoRA (Low-Rank Adaptation) training. I used to make custom banners, but with the development of neural networks, it became less popular.
I don’t know why, but I often see strong women in this world, while men often suffer from nonsense: they drink, smoke, use drugs, and waste their lives. Sometimes I think I’m the same as them. I often made plans to do something, change my life, start earning money, and I even found work. For about a year and a half, I was an operator at a local transport company, answering calls and managing clients, but with the onset of COVID, they closed. Then neural networks appeared, and I freelanced a little, which also lasted for about 1.5–2 years. I was able to buy a modern computer. But there were also many failures. I tried to learn programming and I liked it, but because I’ve been typing on an on-screen keyboard for many years, my typing finger became inflamed from the sheer amount of writing; it hurt terribly and became crooked, so I gave up.
I would like to study. I liked psychology and law, but these are more like dreams that warm the soul and are not destined to come true. I’m not sure I have enough strength for this (and it seems I’ve forgotten everything I studied 20 years ago).
As for music, I like hard rock, heavy metal, grunge, and alternative metal/rock. I’ve also listened to punk rock, but mostly Russian bands, and sometimes I like to listen to classical music. I also like operatic vocals, but I’m not very knowledgeable about it. For a while, I really liked the band Nightwish, where metal intersects with opera singing. Regarding what’s happening in the world, it seems to me that we are plunging into the Dark Ages again. There is too much stratification in society, too much injustice, and there is no solution. The rich live in their own world and do not want to change anything. I am afraid of where the world is heading — that it is mired in conflicts, and human rights and freedom of speech are turning into empty words again.
As part of GOAT’s collaboration with C.R.I.P.S.R.I.S.E., I’d like to quickly show off their newest 3D printable design, a hook designed to work with the Permobil’s Unitrack mounting system. You can take a look (or print one yourself!) on Thingiverse:
One of GOAT’s workshop participants asked for this for his chair, and would like to test different styles of hook. There are some printable designs already out there, for example, on yeggi.com: https://www.yeggi.com/q/permobil%20unitrack/
After taking a look at this and other designs, @CriptasticHacker ended up using this model as a base, improving on it, and publishing it with an explanation of his changes.
I was curious to see this printed with a strong nylon or carbon filament, but was persuaded that we should first try this PetG model before amping things up to print in tougher filament that will take many more hours of run time to complete.
We’re looking forward to installing it and giving it a good test!
And now for something completely different! Last week we saw some highly technical wizardry. Today I spent some time just cobbling things together with low tech “found materials” in my basement, to minorly improve and modify my powerchair.
My Whill C2 powerchair needed a cane holder and I had a section of PVC pipe set aside to make one. You can get a $100 fabric cane holder, kind of like a quiver for arrows, from Whill, but I figured why not spend a dollar to make one instead.
Here’s my short length of pipe, with holes drilled into it, ready to attach to the chair frame. I figured I could find somewhere to put it, and got out some cable ties and other material to see what might work best to fasten it on.
First of all, take a look with me at the seat back of the C2. It has a nice aesthetic look to it, curvy, sleek, matching the rest of the chair. It even has double slots on both sides, useful for attaching a cane holder.
However, I felt that on top of this curved plastic cover, my round length of PVC pipe would stick out further than it needed to, and I also figured taking the cover off could expose a different set of slots in the actual seat back slots. The cover doesn’t do anything functional. It just hides the metal and bolts of the seat back and frame. Off it goes!!!
Here’s the seat back of the C2, naked:
There are four bolts that go through the long slots in seat back and into the frame of the chair, meant to allow you to loosen the bolts and move the seat back up and down to adjust it to the height you like. This is a nice feature of the Whill design! To get the plastic cover off of the frame, I had to completely remove these bolts and the seat back, temporarily.
Already, you can see how this kind of modification goes. You have a simple idea: attach a length of tube to a wheelchair. You then realize you have to take apart more of the chair than you thought you would. Keep going back for more tools, more sizes of bolts, nuts, and washers, and so on.
To that end it is good to be extra prepared in your work area. Have a tray or bowl or two ready to hold screws and small parts. Have a sharpie and some tape to label things or even a notebook to take some notes!
It is also great if you have a secret hoard of a million different sizes of screws and bolts and little tools. Saves you having to go to the hardware store and lose all your momentum to finish a project!
Back to our hack!
Maybe I lied a little bit about the uselessness of the plastic cover: It has some little “ears” that stick up maybe half an inch, which are meant to help you hang something on the back of the chair. They aren’t big enough or tall enough to hold a substantial backpack, grocery bags, or anything real, in my opinion. I end up just looping the shoulder straps of my backpack all the way over the entire seat back.
So, as I looked at the slots in the newly naked seat back, I figured I could also add some hooks. Back to my workbench to dig around in the drawer of hooks and brackets. I had several possibilities!
The narrow black hooks seemed like the best fit. They came with screws to attach them to a wall. Since screws would not work well with the wheelchair frame, I had a search through my motley collection of nuts and bolts. It had to be a small bolt thin enough to fit through the hole in the coat hook, not too long so it didn’t end up poking me in the back, and I had to find a washer that would help stop the bolt from falling through the fairly wide slot.
Here is what I ended up with. M4 bolts, with hex socket heads, 15mm long. The washers aren’t quite right and don’t match each other. But they work well enough for now.
I have a note to get better washers and also to get some rubber stuff to shove between the washers and the curved seat back, so that it won’t slip or come undone. (I have good luck going to hardware stores and just asking someone who works there to suggest an option!) Once I have some rubber rings or maybe even just a foam sheet in there, I could also add some vibra-tite or blue loc-tite to the bolt to keep it from coming loose.
As another critical step in this process, I added spare bolts and the right size hex keys to tighten them into my portable toolkit!
Finally I am ready to add my cane holder.
Or am I ?
I looked at the slightly battered piece of black PVC pipe. It will probably get covered with stickers so maybe I don’t care how it looks. But the edges were very rough where, a while back, I used my (glorious) cordless mini-ripsaw to hack a length of pipe off of a much longer piece. I imagined my grocery bags catching and tearing on it, or someone helping me load the chair into a car scraping against the jaggedy edges. A metal file and some sandpaper helped me to smooth down the edges nicely!
Then I used two cable ties through the holes I drilled, to pull it tight to the vertical bar of the seat back frame. It felt like it needed a little extra snugness so I added two black pipe cleaners around the frame and the entire pipe rather than through the holes. Gaffer tape, duct tape, or more cable ties also would have worked fine for this stabilization but I was curious how pipe cleaners would hold up.
Here is the final look. It doesn’t look too bad! It’s at least neat and compact, the hooks are black to match the frame color, my cane fits nicely into the holder, and the hooks will carry my backpack and several grocery bags as well!
I was very happy with my little modification! I even remembered to clean up my workbench to put everything away, since I got out about 100 more things than I had originally intended to.
This should be written up as kind of a recipe rather than this log of my process, but a journal of how I figured out how to do this is also useful, I think!
GOAT is running another free workshop in San Francisco, at the Independent Living
Resource Center SF! In honor of Valentine’s Day we are calling it “Love Your Ride”. At this event we will test out our pilot Fix-It-Kits, which are small pouches of tools and materials, along with a pocket sized zine.
The zine has a workbook page to record useful information about your mobility device, and then goes through inspection, cleaning, checking vulnerable points like all bolts, screws, wheels, folding parts, and attachments. Collecting that info will help us construct a custom kit, with replacement bolts, tools for tightening bolts and screws, and so on.
Free workshop to learn maintenance for your mobility gear
Wheelchairs, powerchairs, scooters, walkers, rollators, etc.
Time: Saturday, Feb. 22, 2:00pm – 4:00pm
Location: ILRCSF, 825 Howard Street – San Francisco
FREE TOOLKIT AND INSTRUCTION MANUAL
We will work with you to make a custom maintenance and emergency repair kit!
You will get to take home a small, portable bag with tools and materials customized for you.
There is also a workbook to fill out with information about your mobility device or devices.
We will look for service manuals and other information to give you as well!
Please register by emailing Brianna@ilrcsf.org with your name, phone number, and any particular access needs you have. Or you can call or text Vincent @ 415-609-2555 if you prefer that to email. We’d love to see you there!
A joint workshop by Grassroots Open Assistive Tech and ILRCSF
Liz Henry, liz@openassistivetech.org, https://openassistivetech.org
Vincent Lopez, vincent@ilrcsf.org, https://ilrcsf.org
Marisol Ferrante, marisol@ilrcsf.org, Nick Feldman Assistive Tech Lending Library
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.
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.
