Tag: wheelchairs

DIY: Access Hacks project

Posted on by Liz

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

Posted on by Liz

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

Posted on by Liz

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

Posted on by Liz

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!



Talking with the city about ramps

Posted on by Liz

After I sent a bit of an email blast to everyone in the city government I could think of who might be able to help, I got a super nice response. A city technician, Charlie, called me and left voicemail; I called him back and we met half an hour later outside my house. There could not be a nicer, more competent-seeming person. It was very reassuring.

We walked around and looked at the main obstacles to places I go often: the grocery store, the school, and my path to the train station. With 6-7 curb cuts, it would be workable. There was a large locust tree in the way of one ramp location. Charlie, who is also something of an arborist, said that the tree was around 5 years from dying anyway; it is split in a way that means a main branch should come off, and its core is dead. So it might should be cut down anyway. Still, losing a tree makes me sad.

I learned many other interesting things from Charlie as we walked (and rolled) the route and discussed tangential things like the city’s history, street names, clues to former land use and the evolution of streetscapes.

The curb cuts cost the city about $5000 each.

As of last year, the standard curb ramp is a wide diagonal, heading both directions. It has texture to warn visually impaired people that a slope is about to happen. It has those yellow bumps at the edge to warn that you’re about to be in the street. The texture also directs where the diagonal is, so you know not to go out into the exact middle of both intersections, but to choose one or the other. Behind the ramp, across the sidewalk, there will also be a sort of raised back curb, which signals the sidewalk’s edge.

I found some excellent guidelines here on the Department of Transportation federal government site. It’s especially good at explaining the different needs of different people; how power vs. manual wheelchairs have conflicting requirements that also conflict with cane/walker/crutch users and visually impaired people. It has a very cool table of best practices for access. Also, the illustrations of dismayed wheelchair users in section 7.3.7, Change of grade, are quite funny.

The streets Charlie and I looked at are fairly old. It is not a “Centennial” neighborhood quite, but I think more like the teens… My own house I believe was started in 1910. The many resurfacings since then mean that the street is raised in the middle from the curb and gutter, so the ramp construction will take the crown and gutter slope into account.

Charlie mentioned my other request for a stop sign, and said that Traffic and Engineering might take a while with that, so he would have his crew construct a base for it in the ramp, and put a cone over the base. If the stop sign doesn’t happen, they grind down the base and fill it in. If they don’t do that prep work, then someone will “drill a hole in my ramp” and possibly weaken it structurally.

Not to mention Charlie’s other mission of training rednecks not to do u-turns on the curb ramps and not to use them as driveways. The weight and the sheering force does major structural damage! Now you know. It would never occur to me to do a U-turn onto a sidewalk. I did not ask about skateboarders…

The city contracts its sidewalk construction and repair out to a company called J & J. They have to have a certain amount of work to be done before the contractors will come and do it all in a batch. This had a particular name, but I have forgotten it. The contractors are in the neighborhood now, working, so might be able to do this; but might need to schedule it in October instead and to do that Charlie will likely have to find another batch of work to go with it. I am sure there’s no shortage of things to be done.

The money for this comes from a pool of money for ADA improvements that the federal government gives to the city each year. I don’t know how much there is total. Charlie described a project he was on that provided sidewalk access from Edgewood Road all the way to the Senior Center on Roosevelt. Not bad!

The alleys on my block also limit access to the main road behind our block, Jefferson. It is actually quite funny because there are very nice ramps and crosswalks all on Jefferson, but they lead you up onto a section of sidewalk that ends in a giant curb at the alleyway. I am not going to worry too much about the alleys. If I want to use the mailbox at that corner, I will drive to it or go across the street and down the block and across the street again.

Charlie and I also discussed the driveway slope. That is something I could pay half of and the city would pay half, to fix. For now I am thinking to just put a big heavy board there as a temporary fix so that my car will stop bottoming out and so that I can get down the driveway in my wheelchair.

Then we went into discussion of trees and City Trees. The city used to recommend crepe myrtles, and then banned them, and now doesn’t mind them again, but since they push up the sidewalks the same as a big shade tree, they recommend you just go with the big shade tree. It helps houses be more energy efficient and it makes the city nicer for everyone. Big trees need 6 feet of planting space between the curb and sidewalk, and medium ones need 5. Our planting strip is narrow; about 2.5 feet. So, on streets like ours, the city does the 50/50 cost split, creates a sort of bump or bend in the sidewalk, moving the sidewalk closer up towards the house. The right of way is actually much greater than most people think, so, about 5 feet into our front yard is actually public land or right-of-way.

That was about 1 hour of my morning, and I took another hour to write it up. Time well spent.

I am very relieved that I don’t have to fight harder for this. Also, I was grateful not to have to explain myself, the ADA, my medical status, or anything else, to Charlie, who took my right to use the public sidewalks as a given. What a great public employee and great person to work with.

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Hacking City Hall

Posted on by Liz

My experiences with activism, and also my peripheral awareness of politically savvy friends, taught me some things that aren’t automatic knowledge. In this case, I would like a 4-way stop sign at an intersection near my house. I would also like curb cuts — sloping ramps from the sidewalks to the street — at the busy intersections along my street, between the grocery store and the many apartment buildings and the two schools. And incidentally… to my house.

If you saw me in the street with my 7 year old at 8:15 am this morning you would understand a little bit better. It is hard for me to find a place to cross the street. The curbs and driveways are steep. Some driveways I can go up and down, and some I can’t, especially if I’m tired and hurting. Meanwhile, my kid wants to walk next to me, but I won’t let him, so I’m trying to herd him by shouting, and keep us both caught up, and teach him traffic awareness and how to cross the street, but while I’m in the street and we are separated by parked cars. Giant Hummers and SUVs driven by people talking on cell phones fail to stop when they see me, even when they’re at stop signs, and they blow past me at 40 miles an hour while I’m out in the middle of the road going past parked cars with people getting in and out, parallel parking with vans full of kids. It’s a nightmare because the drivers are careless and distracted and ill-tempered and inconsiderate. Because we don’t have school buses in this district, everyone has to walk or has to drop off their kids on the way to work. The police circle the block, giving tickets to the worst offenders.

So, what to do? I need to be able to cross the street in my wheelchair! At an intersection! With my kid!

I looked up some addresses on the city web site and wrote a couple of emails months ago. When I realized that didn’t have any result, I figured I’d go in person to City Hall and ask questions. Procrastination ensued. I continued wheeling my wheelchair in the street whenever I needed to get groceries.

After three days of walking my son to and from school during periods of very heavy traffic, I lost patience with the situation. A few years ago, I watched my friend Elaine work the machinery of the city, and her position as president of the Moms’ Club, to get a stop sign at a busy intersection that was between her house and the local playground. It benefited everyone in the neighborhood. I saw her do very similar things to get shade structures and bathrooms in some of the local playgrounds! But if it were not for seeing her go through that political process, it wouldn’t have occurred to me to do what I’m doing now.

city hall

So! I went to City Hall. I asked at an information desk who I should talk to about sidewalks, ramps, and stop signs.

Step one. I explained briefly what I was looking for at the information desk. The information desk person told me to go to Planning.

Step two: The guy at the Planning desk told me to go to the Public Works building. I asked him more pressing questions, and he responded that maybe I could talk to someone in Engineering, but that would not help and the people responsible were in Public Works (across town.) Since those were the people I wrote to in the first place who didn’t respond and I didn’t trust his information and I didn’t want to pack up my wheelchair and drive across town and unpack myself into the wheelchair again, I told him I was going to go upstairs to the big sign I could see that said “City Manager” and “City Attorney” since I suspected there was some more direct path to action. He seemed mildly perturbed. I smiled with sharky politeness.

Step 3: On the way to the elevator, I told the information desk person #1 (nicely) that the person she had sent me to didn’t know what I should do next.

Step 4: Upstairs, an information desk or reception person for the City Manager seemed to know what I was talking about and what to do. She looked up some information online, and wrote down a name and phone number and email of Rich, the Traffic Engineer, and his assistant Peter, who were just downstairs next to the Planning desk I had gone to in Step 2.

Step 5: Someone came to talk with me at the Maps and something-or-other desk after I waited a few minutes. I gave my two-sentence summary of what I would like. She asked if I had an appointment to speak with Saber. I said I did not, but I would like to wait and speak with anyone who could explain the next steps in the process to me. She said things that indicated everyone was very busy and went away. I waited.

Step 6: An engineer, Brendan, came out to talk with me. We went over to a low desk that was pleasantly wheelchair accessible, with a large, lightweight computer monitor that swivelled around. I explained to Brendan, and showed him my map of the 3 blocks between the grocery store, my house, and the school. On it I circled the places I wished for curb cuts, and the intersection that I think needs a 4-way stop instead of a 2-way stop. I asked Brendan what I should do next to request these things from the city, through official channels.

(Here is where I would not have known there *was* a way to do this sort of thing, if not for the local Redwood City Moms’ Club and its email list, and my friend Elaine.)

(I would like to point out the many steps before this actually productive step; Expect delays, and uncertainty, and people who don’t know what to do next or who to refer you to; Don’t get mad at them, but keep patiently asking different people until you hit the good one who will say, “I don’t know, but let’s go find out.”)

Step 6, continued: Brendan listened intently to my explanation. He said that I should do separate requests for the stop sign — for which there was a known procedure — and for the curb cuts, which no one understands, which take longer, and which will cost a lot more.

Then, Brendan he explained what I should do and what would happen next. I should write a letter to the Senior Engineer, Saber. I gave a feral grin and whipped out my computer. There was wireless. I wrote the letter and showed it to Brendan across the desk. He said it looked okay. I cc-ed the letter to one of the school principals and to my housemates, the only people on my block whose email addresses I know offhand.

Then I took notes on paper for what he said next. Here is what will happen and what I should do:

– Write a letter proposing the stop sign (done!)
– Write a letter proposing the curb cuts.
– The city will respond within a couple of weeks (someone is on vacation)
– Engineering will order a traffic analysis, just from the fact of my request letter for the stop sign. They will put those tube things across the street and do traffic counts, and I think they’ll do a pedestrian count as well.
– Meanwhile, I must get signatures from the people living at the four corners of the intersection. Brendan called up an application that uses Google Maps, and we talked about how some of the buildings at the corners were single family and some were apartments and some were duplexes. The more signatures from those addresses I can get, the better.
– Also meanwhile, I must get signatures from people within a 1-block radius of the intersections.
– Brendan was aware that the neighborhood has many Spanish-speaking and Guatemalan/Salvadorean/Southern Mexico-native-language-speaking immigrants, so he advised me to make my petition bilingual and also warned me that people might be wary of signing things for various reasons.
– Meanwhile, a letter will go out from the City to everyone on the blocks near the intersection to explain the traffic analysis studies.
– Then, the engineer makes a recommendation to the City Counci
l in a staff report.
– A public hearing will then be scheduled for the City Council to discuss the stop sign.
– It is important for people who want the stop sign (or curb cuts) to come to the meeting, because if only people who are opposed come, it might sway the council.

Brendan explained other issues in excellent detail. He called up fles on his computer, and swivelled the monitor around to show me the screen. The main thing we looked at was the list of criteria that the city considers in its recommendation: how many cars must flow through the intersection in an 8 hour period, but the ways around that as well; pedestrian count in smaller time units is considered along with average speed of cars going through the intersection. That was interesting! And useful! Brendan said he would find out if he could email me that document, and gave me his card.

We discussed strategy for the curb cuts a little bit. He mentioned again that they were quite expensive and he had never seen anyone request them, and so there might be a bit of confusion as well as reluctance from the city. But that there was probably money for it somewhere. “Well, I think there has to be, because of the ADA,” I said in a friendly way. I hoped that would indicate my total willingness to work through their process, but would show that I am aware there are legal rights involved here, and laws that specify things like sidewalk accessibility. While I don’t think we have to go there, it seems good to at least mention the law.

I have some good ideas. IN addition to pounding the pavement for signatures, I could go speak to a middle school class at both schools, and perhaps enlist help from a social studies or civics class. I could explain the process I went through, and get some older kids to knock on doors and get signatures. Then I will not have to do some much physical labor, and a bunch of kids will learn something about local political processes and how to effect small changes.

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In which I am cranky and grateful about access in Chicago!

Posted on by Liz

(I wrote part of this before BlogHer but forgot to post it!)

Anyone other people with disabilities going to BlogHer, by the way? I have not tried to mobilize to find out, but I’m wondering.

I am going to be able to get around town pretty well with regular taxis. My wheelchair folds up and fits in a car trunk and I think my hotel is close (though I have not actually checked! ) My main concern is that sometimes I just need to lie down somewhere. And I am fine with getting out of the chair and getting on the floor for a nap, which tends to freak people out. “OMG are you okay! Do you need help getting up! Did you fall?”

***

So, at BlogHer, the access was more or less okay.

The conference center at Navy Pier was very spread out, which means it’s exhausting and sometimes time consuming to get around. For example, there was no bathroom on the same floor as most of the panel rooms. The first time I needed the bathroom, it was hard to find one and I went way off in the wrong direction, and then had to take an elevator to it. Plus, you’d have an event on one side of the conference center, and then another event on the other side, separated by a giant crowded hall and two elevators.

I loathe Moscone Center for this reason as well. It is just Too Big and spread out. WisCon, in contrast, is in a hotel that perfectly fits 800-1000 people. The elevator problem is still there, but the exhaustion of moving around a huge space is eliminated!

Buildings in downtown Chicago had worse access, on the whole, than ones in downtown San Francisco. There were more tiny custom-installed lifts, and less ramps.

Lifts suck because they are almost always locked or not working or both. They’re loud, conspicuous, fussy, isolating, and clunky, and often they’re installed in the backass end of nowhere of the building while your friends are all going somewhere else, either because it doesn’t occur to anyone to keep you company or because they’re not allowed in the tiny awful lift.

The main problem, though, is that they’re kept locked and turned off. I flounced around Chicago telling building managers and security guards that it was illegal to keep the lifts turned off and locked. I don’t know if that’s true! But I can’t imagine that it’s not. It sucks, whether it’s illegal or not. I’ll go look it up and edit this entry later.

I ran into the “just two blocks” issue a few times. Someone would tell me somewhere else was just a couple of blocks away. It is always a mistake to believe this! It ***never*** is. Instead I found myself braving traffic and curbs and wheeling uphill 12 blocks over cobblestones, chain link fences, bricks, shark teeth, hot lava, and paths made of swords and darkness. Next time I will have prepared much better, with maps, and more phone numbers of taxis.

The big hotels were halfway okay. I became totally furious in the W Hotel when there was a ramp down from the lobby to the bar, but the ramp ENDED IN STAIRS. What the hell, people! I bitched. And rather than listen to anyone I told the hotel people to go away while I hobbled down the steps. I can totally do steps but it’s somewhat painful and after all day sitting up in the chair, I was not in the mood. It is awkward, and people stare, and I’d rather they stare at me and think “Oh Cool” while seeing me in a confident moment rather than seeing me limp and lean. Not that limping is bad mind you. Just that I was NOT WEARING MY PITY SHIELD that evening.

So then at a super fun fancy-ass dinner with a gazillion bloggers I had to swear my way into a dark pantry closet with some manager with a key while all the other employees and various random people stared and thought “Oh look the crippled chick is going to go and pee…” And was vastly annoyed and told them to leave the damned lift ON… with a light on… and with signs that say lift this way and bathrooms upstairs with a nice blue and white disability access logo.

Screw them!

I won’t even go into the Tale of the Sushi Restaurant and the Security Guards and the Building Lift and Chris Carfi helping me up the stairs! GAH. But I was grateful to the nice busboy who shook his fist at the non-working lift and who repeated my “fuck you!” that I yelled up the stairwell at the totally not-there security guard with the mythical lift key.

At City Centre hotel in contrast, I spoke to a polite manager once… and she was sympathetic. And the next time I came back to the hotel, I found this:

BlogHer

THE KEY in the lift!

That was so exciting, and it has never happened to me that a polite complaint has resulted in a policy change of this kind!

It was heartening beyond the happy convenience of being able to pee, get food and drinks, and talk with people upstairs when I wanted to… at my convenience… without fuss or frustration or delay.

Thanks, nice hotel manager!

BlogHer - nice hotel manager

About a week before the conference I think Elisa asked me if I knew any other bloggers with disabilities who would be there and what the issues might be. She was worried that I would not be able to ride the shuttle buses! I appreciated that concern. But the issues are sort of more complex than that!



Pissed off cyborg in your face

Posted on by Liz

New!
Originally uploaded by cdent

If this round of wheelchair use keeps for for much longer, then finally everyone in the known universe will have gone through their awkward reactions and I can stop having the most annoying boring conversation ever.

Here is something I wrote for WisCon. If only I could have forced all 1037 people there to read it.

A quick lesson in wheelchair manners:

1) Please ask before touching!
2) That goes for pushing the chair especially.
3) My lap is not your shelf.
4) I’ll ask if I need direct help.
5) “Would you like help” is fine, good manners; “Here let me do that for you” while doing it already — is not. I value my abilities.
6) Walking beside me is nicer than walking behind me; then I can see you.
7) Coming down to my level for conversation is extra polite, thanks! Looming over me especially from behind… not so much.
8) Think of the chair as an extension of my body or personal space, treat it as such.
9) Thanks for unblocking my path so I don’t get trapped, much appreciated. Move your backpack out of the aisle.
10) Really, please don’t move the chair! I wouldn’t pick you up and move you, would I?
11) Please don’t bump it either, it’s annoying and often it hurts me.
12) Let’s talk about science fiction and feminism instead of wheelchairs and disability and pain, once we get past introductory chit chat.
13) No I don’t really want to listen to your process your feelings and fears about disability unless we’re already friends.
14) No I don’t want your medical advice unless I ask for it.
15) If I ran over your toes, my bad, I’m so sorry
16) I’m not here to satisfy the whims of your curiosity. Why do you need to know? Why do you want to know? Could you possibly put off finding out till you know me better?

Clip and save!

Because that was the polite part. Here is the rude angry in your face part:

What ‘s wrong with you? Why are you in the chair? Oh my god WHAT HAPPENED TO YOU? Is this temporary? Is this permanent? Did you break your leg? Did you go to the doctor? Did you get an MRI? What exactly is wrong? You sure get around well, how did you learn? When will you be out of the chair? Are you sure? I’m so sorry! Are you in pain? Are you going to die? You sure look comfortable. Wow lucky you, you get to sit down while we’re all standing in line. OMG are you OKAY?

(Answers: Nothing, what the hell is wrong with YOU? So that I can get around. I was born and then grew up, what happened to you? I don’t know. I don’t know. No, but I can tell you really really really want me to have broken my leg. What do you think, do you think I went to a doctor, but that’s not what you’re asking, you’re asking what my prognosis is. Do you want to help diagnose me? I don’t know but I have some possibilities which we could discuss exhaustively OR we could have some other more interesting conversation. I learned last time I was crippled which was around 93-98 with varying degrees of disability, oh that surprises you, check your assumptions at the door; oh by the way you seem to get around really well for someone with their head up their own ass. I don’t know. I don’t know. I’m sorry too, for your mama for raising someone so rude and boring, I’d rather be crippled than be a drip like you. Yes I am quite likely in a considerable amount of pain, and you know what, I also was in varying degrees of physical pain when you saw me walking around, why must you bring it up? Yes I’m going to die and so are we all and so are you, especially, about 5 seconds from now. If you want to try being as comfortable as I am I can beat you up right now and stab some daggers into your back. Uh yeah lucky me I have run out of sarcasm to even throw at this one, o falsely jocular person. Yeah, are YOU okay?

Hey you know what, world? Let’s have a conversation about your painful struggle with your own hemorrhoids. Because apparently your head is up your ass. That must be really painful for you and I really admire how you deal with the challenge!

Every time I go out in public in a crowd I get totally fed up. I’m really sick of being the crippled girl. It was a relief last night to scoot over to the couch for a bit and have the pressure off me, the pressure of being looked at and stuck in that box in people’s minds.

You can see their faces as they think “Wow… that could happen to me.”

Pain is annoying and tiring and distracting, and I have very much valued the times it goes away (rare) and that it doesn’t interfere with physical function too much. However, it is not new. It is also not the end of the world.

Limited mobility is annoying and distracting and inconvenient and sometimes isolating or frustrating but you know what… the worst part of it for me so far is the way it makes people act like dumbasses.

I’m off to write a really dumb Mary Sue-ish science fiction story where everyone slathers pity on the people who can’t interface with the cyborg telepathic alien hovercraft symbionts and are doomed to dreary, unassisted, bipedal motion.