Tiny scooter test run

Last week I got a new tiny mobility scooter. It is 35 lbs and easily disassembles and folds. Here I am out on my birthday at Pier 39 after a ferry ride with friends!

Liz travelscoot pier39

It is a TravelScoot Junior Deluxe, ie, the version for short people or children, and with a lithium ion battery. About a third of the cost of the scooter is in this battery. The “Junior” size is pretty good for me. I’m 5 foot 3 which is at the top of the recommended height. I went with the smaller size figuring it would be easier to handle while I was folding it, and also because the Junior size has 2 inches less width than the regular model. So, in theory I can fit through doors 24″ wide, same as with my manual wheelchair.

Assembly of the scooter was easy. It took under 10 minutes. The assembly instructions were slightly different from the manual shipped with the TravelScoot Junior. There was a little supplement that showed how to position the battery upright in the back for the “Junior” version.

The battery fastens on with velcro and is easy to plug in and unplug if you have good dexterity. I am mostly doing this while sitting on the ground — or I can do it leaning over from the scooter seat. My only quibble with battery setup is that I can’t charge the battery without taking it out of its tray, because the charging port is blocked by the side of the tray.

I put a Crampbuster on the throttle so that I can control the scooter’s speed without constant gripping, which would be hard on my arthritic hands.

Comments on driving the TravelScoot Junior:

It coasts down hills. The brakes work fine. Easy to drive. Reverse works well, and is nice and fast. Acceleration is slow whether you are reversing or going forwards, but not too slow. This takes getting used to. My phone’s speedometer hovered around 4-5mph as I zoomed around. It is a little bit tricky to match paces with a walking person. To go slower than the max speed, I have to squeeze the throttle exactly right. If I let up the pressure the scooter slows down.

There is no parking brake so if I pause to mess with my phone, I need to park carefully. This is quite annoying on the bus, but I can still handle it. It means that in order to ride the bus with any ease I will need to rig up some kind of parking brake!

There is a slight tendency to “drift” or stutter sideways a little bit when going fast on a bumpy street or sidewalk. The undercarriage clearance is fantastic. I could probably hop a low curb in this. (Slowly)

I would like to customize or get a new back support as it is a little too high up and far back to support my low back, which needs it! It may be possible to just swap out the entire seat. It is a standard pole with clamp assembly, like for a bike seat.

So far I’ve put this in the back of cabs a few times. I like that I don’t have to ask a random taxi driver to help me lift a 95 lb machine into his trunk. Instead it is something I can easily lift myself.

It would be good if I made a special padded battery carrying case, like a battery messenger bag, for when I need to put this into a car. TravelScoot owner manual suggests a padded lunch bag, but the battery I have is too long/wide for a lunch cooler bag. Here is a good craft project for my hackerspace. If I make a battery carrying case I’ll post its design on my blog!

I have also successfully grocery shopped with two backpacks and a large bag. One backpack hung off the seat back, another from the handlebars (which is awkward and I don’t really recommend it) and the large heavy bag in the red canvas shopping tray below the seat. That thing is just fabric, and attached with velcro, but I can tell you it carried about 30 lbs of cat litter and cat food with no trouble at all.

This scooter makes people stare, and ask questions, much more than my usual mobility scooters or manual wheelchair. I need to carry small flyers with an FAQ.

For the FAQ:

* “Does Medicare pay for that” (People on the street want these for their older relatives.) My answer: Probably not. And I don’t really know. I have never yet been on Medicare.

* How much did that cost? (An awkward question. I answer by saying “You can get a mobility scooter from about $700-2500” That way avoiding standing around at a bus stop admitting I just dropped 2K on this beast. I did not mind so much saying that I bought my old Zipr for $700. Class guilt . . . )

* Is that electric? What the hell do you think, I make it go with the power of my mind????? Oh, people.

* How far/fast/long does it go? Several miles, all day at least, 4.5 miles an hour, charge the battery by plugging it in overnight.

* Can you put that in a car? Yes you can and it easily folds up.

* How heavy is it? 35 pounds.

* Where do you get them? (Let Me Fucking Google That For You) Oh ok. *sigh* Travelscoot.com. Someday I hope these things are just in every big drugstore, Target, Walmart, etc. Or just in bike shops and you can test drive them there!!

* Yes, it has reverse. No, it does not beep. No, I really don’t want it to beep. Do you beep when you take a step backwards? Well then.

* What if it breaks? Yes. What if. That’s the million dollar question. You better learn some things about electronics or cultivate a relationship with your local electric bike/scooter repair shop. The thing has a warranty, which I will probably be exploring at some point . . .

* Not asked but should be on the FAQ: You need to have good balance, ability to squeeze the hand brakes, and be able to transfer independently to use this. 3 wheels is not usually a good option for an elderly person as you can easily tip over.

There is room for competition for scooters like this that have a few more features but are still stripped-down, lightweight, and easy to understand for maintenance and repair!

There is a fantastic blog with Travelscoot reviews by Elizabeth Fisher that has reviews and photos by many people using their TravelScoots.

I put up some unboxing and assembly photos. Feel free to take a look at all my photos on Flickr with the travelscoot tag .

In short: this is a GREAT scooter if you have 2K lying around and you are a very nimble person who for one reason or another can’t walk very well. To drive it, you need good balance and good hand control (brake squeezing especially). It could be possible to modify a travelscoot with a custom seat to meet your particular seating needs!

Wheelchair and Scooter Hack Day

The Hackability group met up at Noisebridge this weekend to work on modifying, maintaining, and otherwise hacking our scooters and wheelchairs. This first meetup was just 4 of us, Ian, Zach, Susan, and me. Ian and I talked first about projects we would like to do for his powerchair and my scooter. Susan is an engineer, inventor, and hacker who has some great ideas about improving power and making a regenerative braking system for my scooter. Zach came prepared to give us a really great talk which I’ll try to describe from my notes.

Zach made the point right at the outset that we can think of scooter hacking as falling under two categories. The first is for comfort and repair; things that are necessary. The second category is mods and upgrades; in other words, extra fun stuff. About comfort and repair: He talked about how long it took him to really listen to his body and pain levels and know what was irritating about his mobility devices, rather than accepting what he was given as “just how it is”.

For him, stability is an important factor. Parts wiggling on his scooter caused more pain for his back and legs, while rattling was distracting and annoying. He then took the seat off his scooter and I demonstrated my seating as well, to show how you can stabilize the seat housing pole. Mine was vastly improved simply by wrapping in a few layers of duct tape. Now, on the bus, my seat doesn’t wobble back and forth forcing me to use my low back muscles to cope with the sway of the bus plus the erratic seat motion. Many of Zach’s other mods were done with cheap and easy to find, objects like zip ties, heat shrink tubing, and blocks of styrofoam. He is a genius of finding free or cheap things to hack! His repairs look sturdy, neat, and durable. (Unlike my cardboard and duct tape repairs which are such a hot mess.)

Scooter batteries

He had recently put a bigger motor into his scooter frame. The motor heats up and has a fan to the side next to one wheel. Jacket sleeves, backpack straps, and other stuff was getting caught and tangled in it. Zach ended up replacing the fan with a blade from a computer’s cooling fan, and making a curved metal guard for it out of what looked like a thin plate of metal from a hard drive casing.

fan guard for scooter motor

We digressed for a while into talk about batteries, their expense, how many amp-hours our batteries have, ideas about bolting extra batteries onto the side of my scooter and wiring them into the existing removable battery case. The lack of cheap smart chargers means that most people with mobility scooters have ineffective chargers which shorten the batteries’ life and effectiveness. My batteries, new in March, are already dropping in voltage output capacity even when fully charged, so my scooter is laboring going up hills or for any significant distance. Susan has plans to design an affordable smart charger. We’ll see how that goes! For more on batteries and charging, read up on Battery University.

MOving on to our second category of mobility device hacks: The fun extras. Zach showed us some of the cool stuff on his mobility scooter, like how his wire mesh basket is stabilized with a flat metal plate with screw holes and some hot glue. I suggested black latex paint might be a good alternative to hot glue, and may try that for my own basket, which squeaks annoyingly against its brackets. We talked about alternate handles for scooter grips and controls then admired Zach’s fancy lights. On the more simple DIY side of things, he has a small battery operated LED light meant for a bike, velcroed onto the side of his scooter dashboard. Advice: use the real Velcro not the dollar store kind! As a quite complex lighting hack, he has strips of LED lights which are wired into his scooter’s main power supply and through a homemade circuit board which steps down the power.

Another complicated hack we discussed was in building our cruise control switches and stabilizing the forward and reverse levers which make the scooter go. These levers on most mobility scooters use a non-precision potentiometer. The screw on these things goes out of whack, which can be very annoying.

I have to digress for a minute to explain scooters, or at least the scooters I’ve used and seen. They have levers on the handlebars which connect to a trim pot and the main power supply from the battery. The power also obviously goes to the motor. There are no brakes. There is a solenoid of some kind which stops the motor. There is no neutral gear so if the motor stops, the scooter stops. But there is also a printed circuit board in the mix which has “safety features” programmed in. In practical terms this means if there is any interruption or big fluctuation in the power supply, or you hit a huge bump in the sidewalk, or I don’t even know what else, the motor cuts off. When you start your scooter and the centering of the levers controlled by the potentiometer is just a little bit off, the motor won’t start. To adjust and fix the potentiometer’s screw, you have to take the entire plastic housing off of the scooter’s controls.

Anyway, Zach’s approach to this problem, from advice from our friend Jake who is a fabulous hardware/electronics hacker, was to add a 50K trim pot in parallel with the existing one. He placed it so that its screw faced outwards, and drilled a hole in the plastic casing so that he can adjust it with a screwdriver without taking apart the scooter. Brilliant!

His other mods include a USB charging port on the dashboard and a scooter-charging port also on the dashboard rather than low on the scooter frame. We ended up discussing charging a lot more, and what gauge of wire is necessary, but I don’t have good notes on that.

At that point we looked at Ian’s powerchair and discussed some of its features and problems. It is a much more complicated beast than a scooter, and a couple of orders of magnitude more expensive to buy and get repaired. Powerchairs have two motors controlling the wheels so that they can turn in place, while scooters tend to just have one motor, with forward and reverse. Powerchairs seem to have much more powerful batteries and have more complicated control boards hooking up the joystick or other single-hand control with the power supply and motor. Ian’s chair has a fancy color screen hooked up to the joystick control but it seems unhackable. Or at least not without risking ruining the chair’s software. It seems a shame that it is not easier to to software or firmware mods that we could experiment with and roll back the changes if the experiments don’t work out.

The thing we worked on was a power plug in the back of Ian’s chair. It is an Anderson connector and didn’t work, maybe from being shorted out, or maybe because it is wired wrong. We thought about cutting the wire and replacing the plug connector or reversing how it was wired. We took off the back plate of the scooter housing to see if there was anything obvious to do that wouldn’t mean we had to take apart the entire chair. Hooray, there was a fuse between the plug and the battery, and it was blown. Zach found us a new fuse from the many tiny parts bins in the Noisebridge hack shelves. Ian replaced the fuse and put everything back together. It tested out okay with the multimeter this time! But the plug that he wanted to use with it, which is a DC/DC power converter from an electric bike company, wasn’t wired the same way. We concluded it would be best to either buy a new part ($50) or cut apart the bike part to reverse its wiring to the connectors.

Thanks very much to the role playing game group in the other classroom who moved most of the tables out of the room for me before our meetup!

scooter hacks

It was a great meeting with a mix of lecture, discussion, theory, and hands on practical demos and work. If you would like to join our mailing list, here’s the link: Hackability mailing list, for DIY hacking, modifying, and fixing existing wheelchairs, scooters, powerchairs, and other mobility or accessibility devices. If you’d like to come to our meetups in San Francisco, you are very welcome. Please join the list and let us know!

On bus lifts and complaint forms

Now that I am using a mobility scooter and can’t drive, I ride a MUNI bus about 4 times a day in San Francisco. Most of the time I get on the bus and everything’s fine. A non-trivial amount of hte time, there is some hitch to accessible MUNI travel and either I cope with that gracefully or I get quite angry.

Most of the time in the last few months I get too discombobulated to document the incident. But I’m resolving to do so consistently from now on not for my own desire to vent but as a political act that might benefit many people and might help us act together to improve things.

When I talk about, or twitter or blog about access difficulties on the bus, people tell me “well you should report it”. I found that reporting it is quite complicated. Also, while dealing with mobility issues and a lot of pain and all the demands of my daily life, even on medical leave from work, it’s been daunting to consider this.

I would like to describe some of the aspects of MUNI transit with a wheelchair and to take a good look at the process of making an official complaint. The complaint process is fairly clunky and off-putting. I’m thinking about how to improve that process and make it productive and useful. Meanwhile, I’ll make a policy for myself of not only going through the formal complaint process, but also twittering the bus number and situation. For my own data tracking, I will take a photo of each bus I ride, with the bus number, uploading it to Flickr. I’ll then take notes on access in a paper notebook. For each Flickr photo I will type up my access notes, and tag the photo with #accessMUNI, the bus number, approximate time of day, details of the experience, and #fail or #win. That will give me some data to work with personally.

I wonder how many lifts break on MUNI in a day, in a month? How many complaints about bus access are there? Is that or should it be public information? Could I build a work-around, an end run, basically an alternate complaint system that has intake from paper forms (mailed to me personally), text messages, and a phone app? Or a simpler web form for complaints?

Here is how a smooth bus-boarding goes:

* The driver sees me and immediately tells the apparently able bodied people on the bus and the people waiting for the bus to use the back doors. The driver extends the lift.
* I get on the lift and it brings me up onto the bus
* The driver or other passengers flip up some seats to make room for me and the chair
* I settle in and we’re good to go (meanwhile, everyone else has gotten on or off.)

Keep in mind the wheelchair seating areas, two on most buses, are midway back in the bus, so to get on or off, I have to go past three to 5 inward-facing seats which might be full of people, some of them with shopping carts, strollers, walkers, and suitcases.

bus-diagram.jpg

In a bad situation, here is what can happen:

* The driver does not know how to operate the lift.
* The driver tries to extend the lift, but it doesn’t work.
* The driver claims the lift is broken.
* The driver says the bus is too crowded and won’t let me on.
* The driver lets all the other people get on the bus through the front door, filling up the seats, then extends the ramp, but now the bus is so full it is very hard to get to the wheelchair seating. People have to get up or move or stand on the seats to let me pass. The people on the bus sometimes get angry and impatient at the fuss and delay.
* The driver does not stop for me at all.
* There are already two wheelchairs on the bus, so the driver won’t let me on.
* Driver has not pulled up to the curb in a place where I can get on or off, and then has to reposition the bus to extend the lift.
* The lift breaks in such a way that the bus can’t move because the doors won’t close.
* I get on the bus but the lift won’t work again to let me off.
* The lockdown clamps either don’t work at all, or lock in a wheelchair’s wheels and won’t release. (I don’t use the locks anymore so I won’t go into this.)
* There is no button for me to push to indicate I want to get off the bus and need the lift, so I have to shout to the driver or get other passengers to let the driver know. (This doesn’t always work: I can miss the stop, or it can mean the driver yells at me.)
* Many other bugs in the system that I haven’t thought to list.

As a more minor complaint I have noticed that all drivers get me to come onto the lift, then lock the front flap upwards so I can’t get off again. Then the driver will sometimes get up to clear passengers from the wheelchair seating area and flip up the seats to make room. In that situation I am sometimes sitting in the rain waiting. I always wonder why the driver doesn’t move the lift to bring me onto the bus, and out of the cold and rain, first? Don’t they think? But, whatever, at least I’m on the bus eventually.

Another detail that would improve courtesy is that when the drivers (correctly) ask people waiting to get on or off to use the back door, and they begin to extend the lift, they almost always overlook obviously elderly and disabled people using canes or simply very frail. It would be much more in keeping with the spirit of things if the driver would encourage these folks to get on the bus through the front door, then deal with the lift and wheelchairs. I often tell the driver, “I’m sitting down — that lady isn’t! Does she need the bus to kneel, first?” But it usually doesn’t work and the driver continues yelling in some elderly person’s face for them to “use the back door”.

I wonder about the training the drivers go through. Most of them can competently operate a lift and are resigned to helping get wheelchair users on and off the bus. A very few are kind and treat disabled people with human decency as a matter of course. I see them deal with difficult people and situations gracefully. It might improve things in general if the drivers had some basic consciousness raising about people with disabilities. Drivers may assume a wheelchair user is paralyzed (they often assume this for me, yet I can walk ) They shout, or condescend, or pat me, or bring in a lot of assumptions to our interaction, and then I see them repeat that pattern with other disabled people who get on the bus. You can’t make people be nice and I don’t need my ass kissed because I’m disabled, but maybe some of that bad attitude feeds into the access problems that I see happen, especially with drivers who regard us as an inconvenience and want to use any excuse to pass us up and who seem to want to make us feel it.

When a lift is broken and a bus passes me up, I always wonder what happens. Does that driver just continue on for the rest of the shift, passing up an unknown number of people who needed a lift? Do they report the broken lift right away? What happens?

Here is a #49 bus, number 8195, that passed me up yesterday at Van Ness and 26th, claiming a broken lift:

49 bus with broken lift

So, moving onward to the complaint process and the forms online. Basically this is the bug reporting system. San Francisco uses the 311 system. Here is the 311 page that leads to the complaint form. People with compliments or complaints can use the web forms, or can call 311 or a full phone number to give feedback. There is a link to an accessible form, but it isn’t really an accessible form, it’s instructions to call the 311 number if you can’t use the web form.

Here is screen one of the complaint form. It asks for an email address and a repeated email address confirmation. You have the option to skip this step.

MUNI complaint screen 1

Then I get a screen that either adds my address to the 311 database, or tells me it’s already in there. It tells me to call 911 in a real emergency and gives me a disclaimer about privacy. There are Back and Next buttons.

MUNI complaint screen 2

Screen 3 is a beauty. It’s 26 fields, 8 of them required.

SF MUNI complaint screen 3
Here are their fields. Required fields are marked with an asterisk. Just for fun, I bold faced the options that I need to complain about most often.

1. First Name
2. Last Name
3. Primary phone
4. Alternate phone
5. *Email address (never remembered from one session to the next; no login possible)
6. Address
7. City
8. State
9. Zip code
*10. Request category — a dropdown menu with these options:
a. Conduct – Discourteous/Insensitive/Inappropriate Conduct
b. Conduct – Inattentiveness/Negligence
c. Conduct – Unsafe Operation
d. Services – Criminal Activity
e. Services – Service Delivery / Facilities
f. Services – Service Planning
g. Services – Miscellaneous

11. *Request type. This dropdown changes depending on which Request Category was selected in field 10.
a1: 301 Discourtesy to Customer
a2: 302 Altercation: Employee/Customer
a3: 303 Fare/Transfer/POP Dispute
a4: 304 Mishandling Funds/Transfers
a5: Refused Vehicle as Terminal Shelter
a6: General Unprofessional Conduct/Appearance

b1: 201 Pass Up/Did Not Wait for Transferee
b2: 202 Ignored Stop Request
b3: 203 No EN Route Announcements
b4: 204 Inadequate/No Delay Announcements
b5: 205 Offroute/Did Not Complete Route
b6: 206 Not Adhering to Schedule
b7: 207 Refused to Kneel Bus/Lower Steps
b8: 208 Did Not Ask Priority Seats to be Vacated
b9: 209 Did Not Pull to Curb
b10: 210 Refused to Accomodate Service Animal
b11: 211 Unauthorized Stop/Delay
b12: 212 Did not Enforce Rules/Contact Authorities
b13: 213 General Distraction from Duty

c1: 101 Running Red Light/Stop Sign
c2: 102 Speeding
c3: 103 Allegedly Under Influence of Drugs/Alcohol
c4: 104 Using Mobile Phone or Radio
c5: 105 Eating/Drinking/Smoking
c6: 106 Collision
c7: 107 Fall Boarding/On Board Alighting – Injury
c8: 108 General Careless Operation

d1: 501 Altercation: Miscellaneous
d2: 502 Larceny/Theft
d3: 503 Fare Evasion/Transfer Abuse
d4: 504 Disorderly Conduct/Disturbance

e1: 601 Delay/No-Show
e2: 602 Bunching
e3: 603 Switchback
e4: 604 Vehicle Appearance
e5: 605 Vehicle Maintenance/Noise
e6: 606 Lift/Bike Rack/Securements Defective
e7: 607 Track/ATCS Maintenance
e8: 608 Station/Stop Appearance/Maintenance
e9: 609 Elevator/Escalator Maintenance
e10: 610 Fare Collection Equipment
e11: 611 Signs, Maps, and Auto-Announcements

f1: 701 Insufficient Frequency
f2: 702 Lines/Routes: Current and Proposed
f3: 703 Stop Changes
f4: 704 Shelter Requests

g1: 801 NextMuni/Technology
g2: 802 Advertising/Marketing
g3: 803 Personal Property Damage
g4: 804 Fare Media Issues
g5: Muni Rules and Regulations

12: Expected Response Time (7 days)
13: checkbox for Disclaimer
14: * Vehicle number
15: Employee ID
16: Employee physical description
17: * Line/Route (Dropdown of all the routes)
18, 19, 20: Date, Time, am/pm
21: Location
22: * Cross Street
23: * Details
24: Do you want a response letter?
25: Was this an ADA violation?
26: If it was an ADA violation, do you want a hearing?
(If “Yes” is selected, and the operator is identified, a telephone or in-person hearing will be scheduled to address the issue)

Sometimes the form returns an error message!

muni complaint form error page

When it works, I get a confirmation screen with an option to go back or to confirm the info.

After confirmation I get an issue tracking number, and if I’ve given my email, an email with all the information I submitted plus the tracking number. So, if a person goes through all these screens successfully, the tracking system seems pretty decent.

My main criticism of the form is that it requires the user to decide on a taxonomy for their complaint. The complaint must fit into one of the dropdown menu options, but the possible options are shown only after the user decides what category it should be in. The complaintant should see all the options and should have a clear “miscellaneous/not included in these options” possibility from the start. THey shouldn’t have to put the complaint into a category at all. The computer can assign a category for it based on the user’s choice from a single dropdown. Uncategorizable complaints, or complaints from people not patient enough to read through the dropdown options, should be accepted too, because they are potentially useful data points. I don’t care if someone just wants to say “Fuck You MUNI” — that is not super constructive, and yet it still gives useful information in that someone was dissatisfied.

The MUNI complaint form appears to be designed with an official bus inspector in mind as the “complaintant”.

I have never seen a bus driver put the restraint system on for a wheelchair user, by the way, though some drivers have tried to get me to lock myself in with the wheel clamps. I’ve actually only seen one guy in a cheap E&J chair with no working brakes use the wheel clamps and never seen *anyone* use the belt system. It is unrealistic and not very workable. I’m sure someone out there uses it and likes it, though.

The “compliment” form is much simpler than the complaint form.

I can picture many other ways to collect this data. Maybe by building a system to take simplified complaints by text message from a feature phone (like Krys Freeman’s Bettastop prototype), or from a phone call. Paper complaints should also be possible, maybe by postcard. Complaints should be collected to figure out where problems may be clustering.

There could be a variety of useful smartphone apps as well. Though how many other disabled people on the bus do I ever seen with an iPhone? Take a wild guess. None! (That number will grow as GenX ages.) Accessibility problems should be reported via smartphone by able bodied people routinely, rather than that issue being left to the people with the least energy and resources.

It is hard to know what details you will need in making a complaint. Bus number, time of day, route number, location of the issue are the main details. I could make preprinted notepad forms and distribute them to other people on the bus, asking them to collect data.

I could see what my experimental data collection on Flickr leads to and if I can get anyone else to do the same and use the same hashtags.

And I could certainly go to one of the MUNI accessibility committee meetings to see what they talk about. Mainly at this point I’d like to know what happens with the data collected and how I can obtain it. Do particular lines have more wheelchair users, or more lift breakdowns? Particular times of day? What could be done about that?

Ideally, lift breakage or other issues would be reported in as close to realtime as possible, and hooked into a great open source system like QuickMuni? What about an app that knows what bus I’m on already, and for which I can just hit a few buttons to give simple feedback?

The thing that pisses me off most of all is trying to ride the bus during a busy time. Drivers then sometimes let 20 other people get on the bus first through the front doors. Good drivers tell everyone to board from the back door, and lower the lift immediately. Bad drivers delay everyone if they let the able bodied people go in the front, then don’t get them to move back, and then the driver refuses to let me on the bus. Leaving me in the dust is just the logical, reasonable thing to do in those driver’s minds. I had one driver on the 24 line yell at me for not *thanking him* for explaining why he wouldn’t let me on the bus. You can imagine my incandescent rage as I am deemed inconvenient and it is as if I have no right to take up space, while every other person, their shopping bags, strollers, and so on are given as much convenience as they could wish. It is for those moments that I’m going to take a photo of every bus I attempt to board, even before there is a problem.

Deconstructing Cheney's De-Inaugural Wheelchair

When I heard that Dick Cheney had pulled a muscle and was going to be attending the inauguration in a wheelchair, I was filled with deadly fascination. How would that play out?

Would the inaugural ceremonies be even remotely accessible? Not bloody likely!

Would he self-propel, or would someone push him? Would the person pushing him be secret service, a family member, military, or a medical worker?

Would Cheney have a steel framed 70-pound hospital clunker of a wheelchair, or would it be halfway decent? My vote was for an x-frame Breezy, still cheap and easy to lay hands on, but under 40 pounds, maybe in red for its political symbolism value. Other wheelies I know were saying “No way, he’ll be in a clunker.” Even though I think that Cheney should (and WILL) go to jail for being a war criminal, I would have liked him to have a halfway decent wheelchair. Hell, I would personally have decorated it with the stars and stripes.

I imagined, and then later saw, Cheney being shovelled about from place to place behind the scenes, through freight elevators and dank back-hallways, maybe even a steam tunnel or two, carried ignominiously or bumped up backwards over some surprise steps no one thought about, and I felt a bit of schadenfreude there though I’m not proud of it. But I wondered, would anyone in power notice, a little bit more than they did before, what inaccessibility means, how excluding and alienating and humiliating it can be? Would anyone process, or whatever they were doing, with Cheney in his wheelchair, rather than leaving him to be tunnelled and elevatored and ramped while they triumphally process up and down majestic red carpeted staircases?

If you were enjoying their own moment of schadenfreude at the powerful man brought low, did you think about why wheelchair use was being brought low, was disempowering? Because it shouldn’t be.

Yes, I kind of giggled at the Dr. Evil jokes, but I also thought about them. Did you? Did you think on why they are a stereotype – how our stories have to give its villains a scar or “deformity” or a wheelchair (and a cat), using disability as a metaphor for being evil? I’m not saying don’t make the joke. I’m right in there posting the LOLcats of Blofeld-Cheney. But think next time you use the stereotype of the Evil Cripple.

I also certainly saw friends and strangers wishing permanent disability onto Cheney like it was a horrible fate, one that he deserved. I understand that is mostly just some anger talking. But this too exposes a bit of thinking in our society that people with illnesses or disabilities deserved them as a sort of punishment for wrongs or sins committed. I would like to invite people to think on that idea for a while. And think on this: why you think it might be such an awful fate for Cheney to use a wheelchair? Why is that? Do you think I have an awful fate? Do you pity me, to the extent that you would damn Cheney?

It was amazing to me, while I watched the inauguration, to see people I know from disability activism online, also Twittering and Facebook-chatting their reactions to Cheney’s de-inaugural wheelchair. Were you watching? Did you feel that strange agitation and excitement and curiosity?

What I felt was this:

How bitter, but how very expected, that the top levels of our own government, the most powerful men around, can’t pull it together to obtain a halfway decent wheelchair and decent access, for one of their own. That exposes the deep, deep ignorance in our country about access for people with disabilities, and how far we have yet to go.

(Have to add: I thought the Daily Show’s coverage of Cheney’s wheelchair was **hilarious**!! It starts at 2:32 in this video clip. He totally could have pushed it further!)

I am not The Wheelchair: Air travel and disability

written on the plane, the other day

When I enter an airport I’m in hostile territory. Dread and courage fill me. In addition to the dehumanization everyone around me is about to experience, the stripping off of possessions and shoes like Inanna entering the underworld, the x-raying and knowledge that any random act, out of our control, could result in police intervention, in taking away our illusion of freedom — in addition to that I am covered in the cloak of wheels, I have lost my human soul, I know that in the eyes of power and ignorance, I am luggage, an inconvenience, an animal, an exoskeleton.

Airline and airport staff talk to each other loudly over me. I am “The Wheelchair”. What I say, what I ask for, what I want, doesn’t signify. My words don’t mean a thing. My money can’t buy human dignity. I have lost my Agency. Speaking creates a cognitive dissonance, a problem, an incident. Inside myself, I have become bravado and willpower, entitlement and stubbornness.

Let’s glide over the shunting into special lines and glass walled holding pens and pat downs… Let’s ignore the issue that the law (the Air Carrier Access Act, in the U.S.) says the airline *has* to let me break down my chair and put it in the cabin, which they almost never will allow, instead *taking away what is crucial to me* and throwing it in the hold of the plane, perhaps to be left behind or damaged, the non-acknowledgment that them taking my wheelchair away puts me in a state of absolute panic. Let’s leave those problems behind.

Let us skip to the Gate.

Here is an example of how the illusion of human decency, manners, could be preserved.

Me (having waited my turn): Hello. I’d like a gate tag for my wheelchair please.

Gate Agent: Here you go. Would you like to pre-board?

Me: Yes, thanks.

Gate Agent: Please let me know if we can do anything else to assist you.

Or this:

Me: Hello. How’re you doing? I couldn’t get a seat near the front of the plane. Could you try to get me an aisle seat near the front? Otherwise I have a hard time getting on and off the plane and getting to the bathroom.

Gate Agent: Oh, the plane’s pretty full. We can probably move you up though since our airline keeps a few seats near the front of the plane open till the last minute for people who need them. Or, I could just switch someone out. Or I will ask the flight attendant to find someone to switch with you once you are on the plane.

Me: Thanks. If you can’t move my seat now, I’m sure someone will switch if I ask once I’m on the plane.

*I happily go whooshing down the really fun ramp.*

Flight Attendant: Hello. (Unfazed and correctly assessing situation.)

Me: Hi. My chair gets gate checked and I have a tag on it. When it actually gets put on the airplane, could you let me know, so that I have that assurance? I need to know that it hasn’t been left behind.

Flight attendant: Sure. Do you need any other help?

Me: Oh, I can get it, but if you don’t mind, would you mind putting this bag over 6A?

Flight attendant: Sure, watch your step.

Me: Yup. Thanks.

Flight attendant: *Doesn’t watch me get on the airplane in a hovering way as if I’m a freak show stuntwoman, or going to face plant*

Once in a while, one tiny leg of travel will go smoothly with most of these elements. People will behave with normal politeness.

Here is how it usually goes instead, an example with everything gone awry.

Me: (waiting in line)

Gate Agent: (in hurried conversation with other agents who have flocked about in dismay) Can you help out The Wheelchair?

Me: *shoots fuck off rays in every direction*

Gate Agents: (more and more agitated)

Me: *pretends to ignore it*

Gate Agent: Miss, MISS? You need to come over here. Did you fill out paperwork? Why don’t I have you down? Are you travelling alone? I’ll need to call someone. You need one of those, a special, a …?

Me: I don’t need an aisle chair. I don’t need any extra help, thanks. Could I have a gate tag for my wheelchair?

Gate Agent: You need to do the paperwork. It’s our policy. If there’s a wheelchair, we have to do the paperwork. Why didn’t they do this at the front when you checked in? We’ll need to take that wheelchair and check it now.

Me: No, sorry. I’d just like a gate tag.

Gate Agent: We’ll take care of that.

(They want me to get into an airport-owned chair, and take my own chair away. To make sure it doesn’t get lost? To treat it like baggage?)

Me: No.

Gate Agent: (Argues) (Calls people) (Consults all other gate agents, flight attendants, the pilot, and/or security officers)

Me: Bye.

Gate Agent: Here’s your gate tag. *comes around the kiosk thing* I’ll just put this on here. *Bends over, touches me or grabs my shoulder or the back of my chair, and tries to strap the elastic band of the tag onto my WHEEL.*

Me: I’ll take that, thanks.

Gate Agent: Persists in trying to strap tag to my tire. Argues.

Me, firmly: Thank you, but no. I’ll put that on. THANKS.

Gate Agent: But I have to just, let me…

Me: NO.

Gate Agent: *sends me major hate rays* (In their mind, I have not properly accepted and appreciated their noble, generous help.) You’ll need to check this wheelchair at the door. They’ll bring it to you at the other end.

Me: Yes, I know. THANKS. (Special fuck-off-and-die smile.)

Later

Gate Agent, with several other flunkies: Miss. MISS!!!

Me: Yes?

Gate Agent: We need you to preboard now. *grabs wheelchair*

Me: LET GO OF ME.

Gate Flunkie, talking real loud and slow: I need to help you get on the airplane Miss. *grabby McGrab*

Me: DON’T TOUCH ME!

Gate Flunkie: I need to help you get down the ramp.

Me: Thanks. No you don’t. Stop. Thanks very much but no.

Gate Agent: Excuse me Miss but we’re trying to help you. It’s our policy that…

Me: I don’t need any help thanks very much.

Flunkie: I have your aisle chair and…

Me: I don’t need one. Thanks. No. I’m getting on the airplane. Byeeeeeee.

Flunkie and Gate Agent: Miss! Misss!!!!!

Me: *wheels fast down ramp*

Flunkie, running after, grabbing: I have to walk behind you!

Me: No you don’t. Get off me.

This almost always happens. Not every time, and not all of it at once — EXCEPT FOR MOTHERFUCKING TODAY ON STUPID US AIR, but it happens enough that I go a bit crazy anticipating it. I usually get on the plane mad as a hornet, humiliated, outraged, and overdetermined not to cry.

Keep in mind that I barely need any help or special consideration, yet I still get treated with amazing inconsideration and disrespect. People who need help transferring or other help get even more disrespect. Likely I’ll be there someday; will my anger have burned me into a little cinder, by then? How will I cope? (Huge props to you all who have worse struggles than mine.)

Today I arm-checked a particularly obnoxious gate agent who would not stop trying to grab for my chair back and my shoulder. I just threw my arm out and blocked her hand hard enough to hurt. It left a bruise on me and likely on her. I feel lucky no one came to arrest me for assault. She was really mad. But, I told her not to touch me, and she kept grabbing. She went beyond grabbing the back of my chair and was on my shoulder. I felt mad enough to get in a fist fight right there. I was so mad I got on the plane without giving
anyone my ticket.

No, wait. Back up. If we’re in Europe or China, or probably anywhere else other than the U.S., pretty much the instant I set a wheel into the airport or train station this will happen:

Me: *wheeling along about to go to the bathroom or shopping or something*

Random station employee, very agitated, grabs me: Miss! Miss, let me help you.

Me: What?

Random station employee: You need to come this way. *tries to start pushing my wheelchair.*

-or-

Random station employee: Excuse me sir, is she going to need help getting on the train/plane?

Me: Hello. I’m right here. You can talk directly to me.

My companion: *drools, twitches, and plays dumb*

Random station employee: Sir, will she need a ramp or a lift? Could you please come this way?

Me: HELLO!!!

In Budapest they tried to put me into an ambulance to travel about 200 feet from airport door to airplane stairway. (I got on the bus everyone else did, instead.) In Hong Kong I did a little dance with a woman whose job it was to push me – I wouldn’t let her grab my handles, and I was faster than she was, and swivelled to face her whenever she tried to go around back.) It has me on edge. I expect absolute bullshit and disrespect, “it’s our policy”, and when it comes, it sinks down inside me like a stone, I swallow it, I swell up with possibly disproportionate rage and pride. I do more than I would otherwise, while I can, to show away, to prove these fuckers wrong, to spit in their faces.

But back to the U.S.A. and its airport situation.

I know, it is just some bad “sensitivity training” and clueless people, who have mostly to deal with older folks who have an attendant or relative travelling with them. I would like to readjust their training.

If you work for an airline or somewhere, and you see a person with a disability, you might assess whether they look like they need help. Or offer once, and back the hell off if we say no. For example, I have obviously a business traveller who just wheeled myself through an entire goddamned airport. I value my independence. I know how to ask for help if I need it. GO HELP SOME LADY TRAVELING WITH 3 CHILDREN for god’s sake. She is the one who obviously needs help. Push her stroller for her, if you must push something.

Their training seems to be in one mode. That is: An object (formerly, perhaps, a person) comes in a wheelchair, pushed by a helper. That helper will need even more help transferring the person-in-wheelchair to an airplane seat and out again.

If the wheelchair belongs to the airport, then the agent has to call the other end or enter something in the computer system, so that the destination gate has an airport wheelchair and staff to push it so that the casual wheeler or older person without their own gear can get through the airport. (However, this never ever works and it is always a big surprise on the other end, causing more consternation and kerfluffle.)

Or: radical shock, the person might have their own wheelchair. The agents never expect the wheeler to be traveling alone. They’re very anxious if you don’t have an attendant or companion. I think they’re worried, perhaps from past experience and with reason, they will have to assist a difficult transition from chair to aisle chair to seat. The agents AND the flunkies who push the chairs should be educated in the variety of people’s level of ability.

I also know it’s not the end of the world that once every few months someone tries to cross my boundaries and won’t listen. Cry me a river… A lot of people with disabilities have to put up with that shit all the time, every day, and tolerate all sorts of things, because they have to, to survive.

I would like to continue from here to talk about race and disability for a moment. Being patted on the head and grabbed in airports is not in the same league as the racist assumptions, threats, and violence that, for example, black men or men assumed to be “arab” face in the same situation. We don’t have to compare those things, but I want to point that out, in part because I don’t think most white people think about it, but in part because I feel sometimes like it is black men in many situations who notice the bullshit way I get treated as a disabled person and who throw me knowing and sympathetic looks, that they GET IT… and with the added dimension of laughing at me a little for my inability to hide my anger and for my assumption that things could be different, for my sense of privilege and entitlement that means I display outrage and am not afraid of being treated as a threat and dragged off to some concrete holding cell (though, in fact, I am a little afraid of it.) I often appreciate those knowing looks and sympathetic remarks. Even when they are a little bit amused or scoffing… It is a little bit like gaydar, an eye contact held an instant longer than usual, with a little spark of sympathetic communication. What do you think of my perception? And that it is particularly gendered? I am unsure what to make of it.

Women with little children are also noticers of ridiculously dehumanizing police-ish petty bureaucrat behavior; they expect it, they don’t get particularly dehumanized but are treated with a bit of extra hatred and the expectation of inconvenience and something of a burden of guilt. We bond with the sympathy of those who are Inconvenient, bulky, overflowing the boundaries. That bond is more the bond of concrete offers of help. Amazingly, it is women overflowing with children, overburdened, who speak to me with humanity. I always try to help them too. I entertain their children, I get them to stop crying, I offer them trinkets to look at and hold, I draw pictures in my notebook or teach them finger games, I give them rides in my lap if we make friends or merely point out my sparkly LED wheels.

On the last leg of this flight I sat near the front of the plane, not presuming to first class, or the first row of the coach section, but picking an aisle seat in the second coach row. I planned to ask the person sitting there if they would switch with me – my seat, which I couldn’t get anyone at the gate to help me switch, was in something like row 25, also an aisle. A significant distance for me at that moment as I only had a cane, not my crutches, and it was a long flight where I’d need the bathroom more than once. The man whose seat it was refused to change. The man across the aisle was outraged, and got up to change places with me. I cried with gratitude. When we got off the plane, I shook his hand. The whole flight I had to sit next to the selfish asshole who did not appreciate the fact that to him walking 20 extra steps was trivial. I wish him a special place in hell. Truth be told, for all the hours of the flight, I wished him to be disabled and face that wall of inhuman indifference. Someday, he will be old, and the wall of ignorance he built for himself will wall him off from the rest of humanity, because assholes like that don’t have friends or family left by the time they feel the effects of age. I don’t like festering in that level of bitterness, but sometimes, that’s where I end up, ill-wishing others so that they’ll learn their lesson, though they won’t, and it’s pointless. Conquering that internal resentment or hatred is part of the difficulty of being disabled, I think.

For Global Voices: About wheelchairs and mobility

For everyone I met and spoke with at Global Voices Citizen Media Summit I would like to pass on some information about mobility, disability, and wheelchairs. I got a lot of questions about my wheelchair and a lot of compliments on how well I get around. In a lot of countries, people don’t have access to wheelchairs, or only know about the most common kind of hospital chair. Here are some answers to the questions that people have been asking me at the conference.

My wheelchair is a type called an ultralight rigid frame. It weighs 17 pounds (8 kilos) and though I am not particularly strong, I can pick it up with one hand. The wheels come off just like a quick-release bike wheel. I can take off the wheels in about 10 seconds, fold the chair, and put it into a car or into the trunk of a taxi.

Standard hospital wheelchairs can weight 40 – 60 pounds (18 – 28 kilos). They are often designed to be pushed by an able-bodied walking person. With a lighter weight wheelchair, more people can gain independence.

These chairs are used by wheelchair athletes, but you don’t need to be an athlete to benefit from an lightweight chair.

The major manufacturers of ultralights are :

Quickie (Mine is a Quickie Ti)
http://www.quickie-wheelchairs.com/

Ti-Lite
http://www.tilite.com/store/

Colours
http://www.colourswheelchair.com/

These wheelchairs can be extremely expensive.

Here are two international projects to spread the availability of light weight, durable, low cost wheelchairs:

Whirlwind Wheelchair International is an open source project meant to help people across the world to set up entire factories or shops to produce low cost, very durable & rugged chairs.

http://www.whirlwindwheelchair.org/

Free Wheelchair Mission is a project to ship very, very cheap and maintainable wheelchair kits to every possible country. (Their project is controversial for many reasons; read this article for background.)

http://www.freewheelchairmission.org/thewheelchair.html

Getting the right size of wheelchair is important. But, given a choice between the wrong size in a light weight, and the right size that’s very heavy, I would take the lightweight chair.

Two good sources of information are Wheelchair Junkie forums, and Gimp Girl, a community for women with disabilities.

Playground baseball

One more thing, to answer the other question that you all are asking me:

My hair is dyed with Special Effects Blue Velvet and Punky Color Plum. It’s been that color for about 10 years. About once a month I put a little bit more purple to keep it bright!

DIY: Access Hacks project

For the second year in a row, I thought of the wheelchair modification and disability access projects that could and should be at Maker Faire. I’d like to make that happen next year.

At Maker Faire this year, I talked with Miguel Valenzuela, who was showing Lift Assist, a toilet lift device that can be built for $150 out of bits of PVC and junk from a hardware store, powered hydraulically from your own water system. That kind of thing costs thousands of dollars if you buy it as a medical device. If it were a DIY kit, and if it had open source plans and instructions up on the web, it could be useful to thousands of people all over the world.

So I got to thinking. Who would I even hook Miguel up with, to get his plans used? What other projects are spreading disability access devices, open source? Could things like this just be given over to an organization like Engineers Without Borders? How can they be open sourced or copylefted? Who’s collecting that information? Certainly not the U.N. committees on disability – ha!

There are specific projects like Whirlwind Wheelchair International and its design for the Rough Rider chair, developed by Ralf Hotchkiss and students over many years and meant to be distributed to shops or factories or organizations in developing nations. In other words, partnership with actual manufacturers. There’s the Free Wheelchair Mission which has a kit to build wheelchairs for under $50. They seem to take donations and then ship a giant crate of wheelchair kits to somewhere in the world. Those both look great. But neither of them were for a disabled person who might want to build their own stuff.

Then I found some nifty sites like Marty’s Gearability blog, which has a DIY category for “Life with limitations and the gear that makes things work”. She has made dozens of posts on modifications she’s made for her dad, who uses a wheelchair. I especially enjoyed the how-to for a wheelchair cup holder and the elegant, blindingly useful offset hinges to widen doorways.

I’m also somewhat familiar with Adafruit Industries and its projects like SpokePOV. What if assistive devices used something closer to this model? Rather than people patenting, and trying to sell their designs to a medical supply company, which marks it up a million times until disabled people in the U.S. can’t afford them unless they have insurance or can wait 5 years and fight a legal battle with Medicare.

I found organizations like Remap in the UK, that takes applications from individual disabled people, and hooks them up with an engineer who will build them a custom device. This I think exemplifies the well meaning but ill advised attempts to help disabled people through a “charity” model rather than through widespread empowerment. If an engineer is donating time and an invention, why not have them write up and donate the plans for whatever they are building, and post the DIY instructions for free? Then, thousands of people all over the world could build that invention for themselves.

Here’s another data-sucking black hole of information that should be out there on the beautiful, wild, free internet: academia. This paper on bamboo wheelchair designs is probably super great, but who knows? Only the libraries who have the bound copy of the conference proceedings of the 5th international bamboo conference back in 2002. This makes me very, very sad. OneSwitch, on the other hand, has the right idea. It’s a compendium of DIY electronics projects to build assistive devices. Perfect!

Meanwhile, I went looking for the latest news in open source hardware. What’s up with the Open Source Hardware License?

My own inventions for assistive devices have tended towards the creative yet slapdash use of duct tape. For example, my Duct Tape Crutch Pockets, an idea easily adaptable to small pouches for forearm crutches and canes, or to get more storage space onto your wheelchair.

My own canes and crutches that fold (with internal bungee cords) could use simple velcro closure straps to keep them folded up while they’re in my backpack or in the car. There are some ingenious ways, also, to attach canes or crutches to a wheelchair.

I have thought of, but not made, ways to extend storage space further. For example, I think that the lack of pockets in women’s clothing is a political issue. Women’s clothes are mostly designed without pockets, because of cultural pressure to look skinny, so women end up encumbered by bags and purses. If you think about how wheelchairs are made, it is interesting that they are assumed not to need storage space, cup holders, things like that. People hang little backpacks off their chairs. And there are a few custom made pouches for walkers, crutches, and wheelchairs, like this thin armrest pouch. You won’t find them in an actual wheelchair store – and rarely in a drugstore or medical supply house. Why not?

As wheelchair designs continue to evolve, I hope that manufacturers will create customizable backs and sides and seats. Nylon webbing with d-rings, sewn into the backs and under the seats of wheelchairs, would mean that custom pouches and packs could clip onto a chair. Then it would be easy to set up your chair with interchangeable bits. My laptop could go in a pouch under the seat, for example, so that it wouldn’t affect my center of gravity so drastically as it hangs off the seat back in a backpack.

I’d like to see more and more mods for chairs and canes and crutches that are just for fun. The little holes in adjustable-height, hollow metal walking canes — don’t they seem like the perfect size to stick an LED light in there?

Also, meanwhile, I had posted briefly the other day for Blogging Against Disablism Day 2008 with a list of ideas for Practical actions that will help, like smoothing out steps into a small business (ie just freaking pour some asphalt in there or build a wooden wedge even if it is not exactly to code; people do nothing, for fear of being sued, rather than spend thousands to do a to-code ramp, and I’d rather they just stuff in a slope and bolt a rail to the wall than do nothing!). After I made the list, I went looking for online instructions on how to do the things I was suggesting. What did I come up with ? Jack shit! Nothing! Nada!

So, here’s what I propose we do:

– Compile free and open source how-tos, plans, designs, etc. on Disapedia. I have made a page for DIY equipment.

– I will go and interview Hotchkiss and his class, and write up more detail on how their open source project works.

– A meeting to share access hacks and start to add to that wiki page on Disape
dia.

– I’ll head up an effort to organize a really good disability/accessibility hacking booth for Maker Faire next year.

For the Access Hacks booth, I’d like to pull in:
– craft/sewing people for stuff like mobility device storage and mods with velcro and fabric
– metal working people
– electronics people (like the OneSwitch folks)
– Maybe invite Tech Shop and the Bay Area wheelchair stores to participate
– obviously, disabled crafty/makery people. I thought I could try to pull in GimpGirl and put the word out in other communities
– Flyers on how to open source your hack and make it free – license info, where to post, hook up with places like WikiHow.

This could make a super fantastic real life application for hardware/craft hacks. I would love to just hang out all weekend with a bunch of other people with disabilities and share whatever hacks we’ve already come up with. That in itself would be productive without even doing it at Maker Faire. I’d like an Access Hacks meeting around here and I wonder if people would host them elsewhere and then post tips on Disapedia. (I would like to use them rather than host a new wiki, but I’m willing to make an access hacks wiki if that’s what people would like.)

Please, leave feedback in the comments.

My evil mastermind futuristic wheelchair golfcart thing

Okay, I totally want this,

so I can zoom around wearing a sort of Servalan dress, like this, in it:

Something more in black, with a ridiculous collar that looks like bat wings and that stands up about 2 feet over my head.

A futuristic space pistol would be nice too!

It’s interesting that it’s being pitched as a Segway-like device rather than as a powerchair. On the other hand, I’ve always thought about the Segway, “What the hell, 200 pounds of machinery and I can’t sit down?”

The people who call it ridiculous miss the point. They’ll get it, though, when I wheel up to them all silent and menacing and then push a button to dump them into my shark tank before my GIANT LASER comes out of the volcanic island and starts bleeping gently before it takes over the world!

It lacks lasers, and a little platform for my nanobot-enhanced telepathic cat.

There is no way I am getting in something called a “Jazzy” especially if it looks like a garage sale office chair fucked a toaster.

I cannot be contained in less than the powerchair of an evil mastermind!

If babies were all considered disabled

This morning I woke up thinking, “What if babies were treated as the disabled are treated?”

What if infancy was medicalized the way that old age is medicalized?

Pregnancy would be an embarrassing, extended disaster. It would mean a person was about to go down to the very bottom of our economic system. You’d be quarantined in your home by governmental order. In order to go out in public, you’d have to prove you don’t have a dangerous infectious disease that makes your stomach swell up. You’d get doctor’s signatures send in forms to your insurance company and the government to declare you were pregnant, and every couple of weeks you’d have to renew those forms.

Glossing over labor and delivery, let’s consider what happens when you’ve got a baby. It can’t walk! It can’t eat food! It’s disabled, poor thing. It needs special nutritional supplements that can only be prescribed by a doctor. It also needs a special device called a stroller which costs maybe five or ten thousand dollars. You’d apply through Medicare to get one. Maybe they won’t approve one for use outside the home! There’s stroller stores, especially online, but wow, would you buy a Bugaboo stroller that cost $5000 without getting to see it first and whether it would be good for your situation, or would fit in your car or whether you could lift it up? By the time your prescription for the “stroller” had been approved by doctors and you’d proved through several insurance company and social worker home visits that you indeed had a baby, and by the time the stroller arrived, your baby could walk. Oh, you could rent a basic stroller from a medical supply store for 10 bucks a day, but it would be MADE OF LEAD.

In some ways you feel that the doctors and social service agencies have a bit of an attitude that if they delay long enough, the problem will shift, and disappear. Just as they act like older people or people with disabilities are going to die soon anyway, so why are they fussing so much about having this wheelchair, or ventilator, or home health care? If they wait long enough, the problem will disappear.

Instead of this medicalized model of the distribution of goods and services, we have Babies R Us, giant stores full of shelves where you can try and buy all manner of highly specialized products for babies. In fact this industry is fairly new. It was created when companies realized that babies change their requirements and abilities every couple of months and that there were people who would buy all new junk for them. Instead of carrying babies in slings or on our hips and requiring that cars have seatbelts, we have 3 different sizes of car seat and a million varieties of strollers good for differerent ages. We have cribs and playpens and Pack-n-Play and Exersaucers and those bouncy things that go in doorways.

Disabled people, and older people, are a similarly lucrative market. The way the market is utterly sucks. There is no Crips R Us or Spazzmart where I can go browse the shelves of fascinating bright colored crap. INstead, I was at a sort of auto body shop warehouse wheelchair store, with a couple of mechanics who order stuff off the internet for me and who guard the knowledge of how to fix wheelchairs jealously.

You can order wheelchairs off the Internet these days but wheelchair stores haven’t change their model of trying to make a profit. And from what I can tell they are failing to make much of a profit. Or if they are it’s at the top and the store doesn’t reflect it.

Seriously, it’s as if we all bought our cars from the skankiest auto repair shops, and there weren’t really any sorts of customizations or accessories we could put on them. There wouldn’t be any auto parts stores. Right now, I can think of at least 3 big auto parts stores within a mile of my house, and every hardware store, Target, and drugstore has an aisle of junk to bling out your car.

I put my hope in the baby boomers; as they all age, they will expect to be able to cruise the aisles of the CripMart and get flowered cane tips and colostomy bags to coordinate with their power suits.

26 million Americans have a severe disability. 1.6 million people use wheelchairs, and I’d bet my boots that many more people would if they could: if using a wheelchair was shown as useful, cool, empowering, for real, and if old people didn’t have to jump through 20 million hoops to get decent ones that don’t weight a hundred pounds. Instead, older people limit their activities and hide their struggles, ashamed, and scared to let anyone see that they might need help, because our system of “help” is so demeaning, dehumanizing, and awful that they’ll rot in an armchair in front of their televisions for 10 years till they die rather than admit that they might need a walker. It’s not stupid pride. It’s a reasonable fear that they will lose whatever independence and autonomy they still have.

I was talking with people about this who argue that maybe the market is limited, so companies don’t think they can make a profit. But it’s not all that limited. There’s something like 5 million babies born every year, and look at that market in baby stuff. If you look at who’s elderly in the U.S. Census the numbers are completely crazy. And in fact… even if you assume that disabled and elderly people are not going to be able to afford to buy this stuff, they’ll have relatives who might be able to.

Having there be real competition to build and sell this junk will help bring the prices down. In 1984, there was no market for “mountain bikes”. Now there’s shops with them everywhere. Though I couldn’t find how many are sold in the U.S. in a year, I wonder how those numbers compare to the potential wheelchair market? My point is, someone is missing a giant capitalist opportunity.

How hard it was for me in the 90s to get my first wheelchair! On the advice of a social worker, I stole one from the hospital, the one I was in as I sat in her office crying and she told me she couldn’t help me because my diagnosis wasn’t solid. My second wheelchair, that I got from a fellow student: one with good insurance. The way that if you have a nice chair, other disabled people look you up and down and guess, “Car Accident?” because only people with good insurance can have nice wheelchairs, and good medical insurance is so very, very rare, while car insurance companies for some reason are likely to be more decent and pay up for wheelchairs promptly, covering the entire cost. The few decent wheelchairs that exist are passed from hand to hand, often through charitable foundations.

Ruth, at A Different Light writes very well about civil rights, human rights, and disability, for example in A Matter of Life and Death.

Then we have people who say they want to die because they cannot get out of their homes because there have been In Home medical equipment restrictions or they can’t afford medical equipment. Their wheelchair breaks and they can’t get another one so they are immobile. This leads to depression. Perhaps their caregiver is an aging parent who can no longer care for them – or dies. All of these changes make disabled peoples’ lives unmanageable and can make suicide look like a way out.

In the last week or so I read through all of Ruth’s archives on this blog, and through some of them on her other blogs. She makes many good points about the consumer model vs. the medical model: try here in Seeing advocacy as a tool and in On distancing from the disabled.
I realized over this past week how the medical and charity models are related — and how wrong they are.

Let people choose for themselves what they want and need!

If you would like to do a useful thought exercise, extend my stroller model to thinking about chairs and cars. People sit in regular chairs: office chairs, kitchen chairs, armchairs. There is no reason that they have to. You might argue if you were from another culture that it would be healthier if we sat on the floor or learned how to squat on our heels. (And they’d generally be right). Likewise, if we just walked places, or ran, or biked, we wouldn’t need cars to get to work. Yet… wanting to sit on a chair or ride in a car does not make a person “disabled”. But even people in dire poverty are often able to scrape up enough money to have a car and certainly to have chairs. If those things were only available to people who have the health insurance of the insanely privileged, our entire societal structure would weaken. I’d extrapolate this to say that if we made it easier for the disabled and elderly to get assistive technology and mobility devices, it would strengthen our entire society.

Top Ten Useful Mobility Gadgets

Here’s my top picks for useful hacks for cripples.

Think about getting some of these for older people who might need help but don’t want to be seen as disabled. Seriously, once they try a bathtub rail they’ll never go back. The boomer generation has not really tapped into all this. I don’t even know what you call the generation before boomers… but they’re hopeless, they won’t use it till they’re losing it. I dunno, maybe if you make it all tie dyed or decorate it with hippie beads, or make that junk look like a ridiculous fancy sports car. Gen X will be so much easier, they will go for the duct tape and stickers as I have. We’re cheap that way. Pretend it’s a skateboard… whatever…

And now, the top 10!

1) A good wheelchair

Beg, borrow, or steal a really nice, light chair. You could always boot someone else out of theirs if they’re more crippled than you are. I like my Quickie x-frame but I’d rather have a nifty Ti-lite, Zephyr, or Boing. If you are in one and you see me watch out because I might kick your ass.

2) Fancy walkers

Walkers with a built in place to park your butt and a bike basket on the front. I’ve never had one but they appear to rock. There is a certain panache to the old-school ones with tennis balls on the back legs. But the new-style walkers seem way more useful for shopping or standing (sitting) in line. (Although I always want to slap people who har-har and comment that they wish they could sit down in line too. Hey, dumbass, want to sit down? Just sit on the floor then, nothing is stopping you, no need to comment on my wheelchair…)

3) A reacher/grabber

Any of them are okay, but I like one with a textured gripping claw. I can pick stuff up off the floor with my 3-foot long robotic cyborg arm! I can get coffee mugs from off the shelves way up high!

4) A bathtub rail
Lumex makes a great portable one, very easy to install. It’s like a rubberized vise grip that grabs onto the rim of your bathtub. It makes getting in and out of the bathtub easy and not scary.

They seriouly market this shit all wrong. It looks hospitally and geriatric. They need to be all like “COOL-ASS GNARLY FREAKY BATHTUB RAIL”. And it needs to have flames.

5) Fancy canes

Oh there are such fabulous fancy canes out there. Flowered ones, scrolly gold ones, and most of them fold up in segments. Mod it up with a velcro strap to keep it closed. There is even a vibrating cane! File off its sharp handle edges for a little more ergonomics in your vibrating fun.

6) Pockets

Get pockets in your clothes. Seriously now! A guayabera is very nice – a Cuban shirt with 2 top and 2 bottom pockets. Why get up. Just carry your junk all around with you. Photographer vests are good. What the hell, who cares if they’re ugly, they’re useful.

7) Duct tape and stickers

Huzzah, duct tape! Modify anything! Build pockets for your crutches or a cup holder for your wheelchair. Then, decorate them.

8) Phone holster

Wear your phone on your belt. Don’t put things in your back pockets any more. You have to lean forward to get them out of your pockets. Screw that.

9) The perfect wheelchair shopping cart

No one has invented this yet, but I thought of two ways to do it.

– Easy-install clamps that would go from the lower front of the chair to the lower back of a child-size shopping cart.

– a lap basket that clamps onto the chair’s sides, so it hovers just off your lap and the weight doesn’t rest on you.

10) Booze and painkillers

I just had a seriously painful nerve conduction study where I got like 20 zillion electric shocks to my leg with needle electrodes and this taser thing and they also wiggled the needles. While I was crying and screaming and naked and covered in snot. Now I can’t walk even more. I swear to god. I’m already crippled, now I have to be tortured? Pass the bottle please. Again.

I’ll just go drool over the chairs on that Colours site again… thanks…

No, wait, I have some honorable mentions for useful gadgets. Shelves, heating pads, electric blankets, sippy cups, trays, and keys on straps around your neck! Add more in comments!