It seems key to then report on what the money is getting used for, to report on how many people are subscribing, to thank people in a heartfelt way and to set goals to increase subscriptions. So, “If we get 30 more people giving $10 a month, we can afford this particular wheelchair, or van, or whatever” is more effective than just asking for money over and over. Then when that goal is reached, set another one and ask again.

Note that Tim and Kaylan ask for people’s time and for help with specific tasks, for visits and company, for rides to appointments and stuff like that too. They made it really clear what they need and made it easy for people to volunteer for small roles or one time occasions. They got people to throw benefits and donate for auctions. Good idea! It’s a ton of work to coordinate in itself, of course.

If you look at sites like Kiva.org they operate on the same principle. They tell a story and they set a goal that’s easy to imagine. If someone said, “Hey, I live in Ecuador and have kind of a hard time in life and you’re making bank as a web developer in the United States of Amazing Privilege, how about you give me some money to even things out?” I might say “Oh sure, okay” since I’m a socialist at heart anyway. But do I go out and do that spontaneously? No. But if someone said “Hey I want to buy a truck for my business and can afford it if I raise $2000 ” I feel pretty good giving them 20 or a hundred bucks towards that goal and am inspired to do so.

I think about this a lot, since I have a job and like to donate to people online or off. It’s a pleasure after my own difficult years and the help I got from friends, to be the one who buys dinner for friends once in a while or to just paypal a random blog-friend 50 bucks when they have a difficult month and have been eating ramen for way too long.

Tim and Kaylan do a really good job of telling the story of what ALS has been like for them, on the blog and in their videos produced by AllAcesMedia. They make it really clear how much that story has been about their entire community rallying around them.

Not everyone has that level of real life support. But we’re still able to build strong communities online. More of us should try telling those stories, including what we might need and need help to get.

While not everyone can articulate their situation or make a story out of their life, if you are capable of doing it or have help to do it, it might be worth a try.

The times I’ve asked for help online have been pretty minor, things like needing someone to bring groceries for a week or two. Successful, though.

I was thinking about this issue recently also because of Roger Ebert’s post announcing that he was putting some of his content behind a subscription wall. He’ll still write out in public for free, supported by advertising revenue or paid by newspapers, but there’s extra stuff you can see by paying him $5 a month. I worry this will be pointed to by news media as a successful example of the subscription model for content. When in fact it will be successful not because people are willing to pay $5 a month for a writer’s extra blog posts and twitters, but because people like and admire Roger Ebert and want to give him a hand and show him he’s appreciated for his lifetime of entertaining writing and performance and for what he’s put out into the world and will continue to do.

Have you ever donated money online to an individual in a hard situation? Why or why not? Would you ask for help in this way? Have you ever run a successful fundraiser for yourself or something you need for accessibility or help with an impairment or illness? Or do you think I’m way off base in suggesting this tactic to people with disabilities?

My name is Mel, I’m an electrical engineer with a built-in high pass filter (severe bilateral high-frequency sensorineural hearing loss since age 2), and this is my first Hack Ability post.

I also just got a car, and like most young people with cars, I like using my car to go out with friends.

Problem: The vibration of a car’s engine and the car rolling over the road happens to be right around the few frequencies of speech I can hear, which in the past has led to chronic episodes of – ah – educational detours, as friends yelled “GO RIGHT! RIGHT!” and I went “go straight? OK!” and missed our turn. Repeatedly. I’d usually lipread, but turning to lipread passengers is not a particularly great option when you’re going 60mph down a highway. In the dark. In the rain. In Boston.

Solution: Dashmirror!

A photo of the dashmirror, with part labels; it's made from a car visor mirror glued to a GPS suction-cup mount.

It’s a simple design. My friend Mark and I made it during lunch one day when we were both visiting Chicago. The parts cost $36.62, but I’m pretty sure you could do it for cheaper.

• $4.39 for the mirror; we found one you’re supposed to clip to your car visor and just removed the clips. The important thing was finding a cheap light mirror of the right size.
• $3.99 for the smallest, cheapest tube of 5-minute epoxy we could find.
• $24.99 for the cheapest generic universal GPS mount in the store. It was still overpriced.
• And then 9.75% Illinois State Tax to make up the remainder.

Assembly instructions: clear off back surface of mirror, choose broadest and flattest attachment for GPS mount, epoxy mirror to that attachment. Like I said, it’s a simple design. The tough part for us was finding the parts. We tried different types of GPS mounts and found a suction cup dampened vibration far better than a clip, so that’s the type I’d recommend; I haven’t yet tried the weighted kind you plonk onto your dashboard.

Dashmirror photo from the back, with the different part outlined in different colors to show how it was assembled. It's very simple.

This is actually the third dashmirror I’ve made, but the first I’ve been satisfied with. I cobbled together the first one when I was 17 in order to adorn the extra family car I drove to college (Melmobile v.1.0), and it was awful; there simply weren’t off-the-shelf parts available for mounting visual displays to the dashboard or windshield of your car. Now, thanks to the proliferation of GPS units, they’re everywhere.

Here’s a photo of the dashmirror in action, with my cousin (also named Mark) as the driver/model. Note that it works equally well from the passenger side – no more aching necks from constantly turning towards your driver! You do have to turn on the interior light when it’s nighttime, but you’d have to do that to lipread your driver or passenger anyway.

A photo of the dashmirror being used inside a car.

I use this every day, and love it. I’d like to come up with a more portable design so I can take it on the road with me (when I share rental cars with coworkers and such) – any ideas?

Here’s the announcement – please repost and email to pass it on!

For this blog carnival, please write about anything you please on or tangential to Disability and Work.

Here are some suggested starting points: What work do you do? How’s that going? Do you get paid for it, or is it volunteer work or something you do because you just love it? What blocks you from employment? If you’re employed, what could be better? Do you want a paying job, or do you feel you contribute to society just fine without one? What unpaid work do you do that you value or that others value, for example, emotional support in relationships? If you’re a family member, friend or ally of a person with a disability, what thoughts do you have on work and employment? What’s the employment situation like for PWD in your country or region ?

Email your post URL, title, and the name you go by, to me, Liz, at
lizhenry@gmail.com.

I’ll post the final Carnival on Composite: Tech & Poetics and
Hack Ability: DIY for PWD on October 25.

Thank you! I look forward to reading some fantastic posts!

Hal points out there is plenty to do with your mind when your body’s not working and there’s assistive technology (and other people) to help us along the way.

People sometimes tell me right to my face that they’d rather die than use a wheelchair, a ventilator, be paralyzed, blind, or lose whatever function it is they are scared of losing, both because they can’t picture solutions to practical problems, and because they “don’t want to be a burden”. If that describes you, go read some of the information at Not Dead Yet:

It’s the ultimate form of discrimination to offer people with disabilities help to die without having offered real options to live.

In his post, Hal says,

I hope that when the time comes, I will choose life. ALS kills only motor neurons, which carry signals to the muscles. The senses are intact. And most patients retain at least some vestige of control over a few muscles, which with modern technology can offer a surprisingly effective mode of communication. Stephen Hawking, the world’s longest surviving ALS patient at over 40 years since diagnosis, is said to be able to type at ten words per minute by twitching a cheek muscle. I hope to be able to read, browse the net, and even participate in conversations by email and messaging. Voice synthesizers allow local communications, and I am making use of a free service for ALS patients which will create a synthetic model of my own natural voice, for future use. I may even still be able to write code, and my dream is to contribute to open source software projects even from within an immobile body. That will be a life very much worth living.

Right on, Hal. You’re fierce! I’m glad you’re determined to not die! Fuck that noise! It makes me proud to see your post!

Free open source speech synthesis software: FestVox I don’t know if this is useful for voice banking and SGDs, but it sounds like a good possibility for people who have ALS.

And the OneSwitch.org.uk site may also be a good resource.

Let’s not forget the totally crucial bit, politics and activism for social change, such as The Community Choice Act which would enable more people to live independently in their own homes.

It is finally here. We are pleased to announce the launch of the Fashion Moves Garment Design Competition. Register at www.fashionmoves.org

The goal of this Competition is to introduce Fashion Students around the World, to the opportunities of designing for people with various disabilities.

For an executive who uses a wheelchair, the suit jacket needs to be shortened and winter overcoats designed to be easier to put on and more comfortable to wear

For a teacher who wears a below-the-knee prosthetic, design trousers that are stylish but easy to enable removal of the prosthetic through the day without needing to take the pants off.

For anyone with limited hand dexterity, design shirts and blouses that have a formal look but are easier to do up without assistance.

For women taking part in the Ms Wheelchair America pageants, designing evening dresses that will not tangle in the wheels.

And performance ski suits for the Paralympic skiers who use sit-skis.

The First Annual Fashion Moves Garment Design Competition is now open! Students studying Fashion and Garment Design are invited to register and put their skills to work. There is no fee to register and all reports are submitted by E-Mail or through the website. Students from every corner of the Earth can meet together through Fashion Moves and exchange ideas and forge future business connections.

Please spread the word. If you have a College or a University in your town, forward this note to them, asking them to post it to the Students. If you know someone already studying Fashion or Garment Design, send them a copy to share with their classmates.

Thanks for taking time to visit. Lets use the internet to it’s best purpose and spin this information around the world in days.

Bye for now. I look forward to reading your thoughts on this work.
Ruth J. Clark
Fashion Moves
www.fashionmoves.org
link from D-WILD list for women with disabilities

Fashion Moves looks like a lovely and interesting project. Now, looking at the contest rules, they do seem unlikely to get the point of the power of the Internet and copyleft. Rather than get people to submit to a contest and win a “Grand Prize” of having Fashion Moves make their design into a paper pattern that Fashion Moves then sells… there could be the vision of an alternate business model. One where, for example, all the designs would have patterns up in a free archive or repository, accessible from all over the world. Fashion Moves could put ads on that site, sell its print books wiht the same patterns in it, which people would still buy as gifts and so on. Their helpful designs would reach more people, probably a much more multilingual and international audience, and they could still make money. More information than *one pattern* would reach the world.

This contest and its limitations is a perfect example of old-style thinking about information and scarcity. Its result may be quite positive in that they inspire some fashion and design students to think about the particular needs of people with disabilities. But they miss both a global business opportunity to build a reputation, and an opportunity to build a valuable resource. Their idea, as it is, does not scale as high as it easily could.

Deal with Disability blog screenshot

I use a Flip Mino. It’s very small and records 60 minutes of video.

2) What adaptations, if any, does it have to enable you to use it
conveniently?

Really none. I can’t use my hands at all so I just have my attendant set it
up and press the record button. Sometimes doing it this way is easier than
trying to adapt it because it can be so expensive and time consuming. Plus,
since it’s attached to my chair, I am totally in control of what’s recorded.
So adapting that was not high on my priority list.

3) How do you mount it to your chair or other places?

I use an action mount made by the Flip Video company.

It’s made for attaching onto bikes but it works perfectly when strapped to
the handle of my chair.

4) Do you do still photography too? If so what equipment has worked out
for you? Did you modify it yourself in some way, and if so, how?

Yes, I do photography. Again, like the video camera, it would have
been way expensive and complicated to adapt it. Instead, I have worked out
an elaborate communication system with my attendant. I generally tell her
what I want to take a picture of and she she takes it from a variety of
angles and settings. And then I download the images, chose the one I like
and edit them in Photoshop completely on my own using a Headmouse.

5) What other free, very cheap, or DIY hacks have you used, invented, or
thought of?

My most useful DIY invention is my communication system which I
invented when I was 16. Before I used to use my hand on a big letter board
to spell out what I want to say. This was tiring because my control over my
arms is not great. So one day I was like, “hmmmmm what if I attached a laser
pointer to a baseball hat?” I have the most control by far over my head and
neck, so this just made sense to me. Those pen lasers only last like 20
minutes, so the next step was to create a battery pack to attach to the
lazer that would give it more life. I just need to change the batteries
every so often (like once a week), and I have unlimited laser life.

Lots (and I mean LOTS) of people have chided me over not using a
Dynovox or other system. My dad even paid me to learn how to use one when I
was 14 and was pretty surprised when I refused to take it to my first day of
school that year. People who make AAC devices and even disabled people tell
me my letter board makes me too dependent on other people. But for me, the
letter board is the best and fastest way to communicate. It gets people to
interact with me by reading my board. (versus waiting for me to type it
out), and it flows more like a normal conversation. It’s also great because
it is so portable and if necessary, you can make one on a whim. I believe
that the Dynovox, especially for people who can’t write and just use the
pre-programmed buttons, is designed to keep people with disabilities quiet
since they can’t completely express themselves. So my board is by far the
most useful DIY for me.

Thank you Eva for the interview, and for your fantastic blog!

I have invited Eva to post her any time she likes. If you want to join Hack Ability and post about your own DIY projects, you are welcome to join and to email me at lizhenry@gmail.com.

Here is a video clip with a bit about Eva’s own invention for her communication device with board and laser pointer hat.

* A recent announcement of a group at Stanford who have created an open source camera called the Frankencamera, or Camera 2.0. Here’s a press release about the Frankencamera.

The Frankencamera is aimed at researchers in the computational photography community, so they can develop new algorithms and publish them, and at teachers at the university level, so they and their students can play with these algorithms. Our goal is to start distributing cameras within 12-18 months, but the numbers will be small (dozens of cameras), they won’t be cheap ($1K if we’re lucky), and you’ll need to be an experienced programmer to use one.

* Elphel free software and open hardware, wth code on sourceforge, an irc channel and a wiki.

* Apertus open source cinema also looks promising!

Any other free/open source camera hardware and software projects out there? I see potential here both as a model for people creating open source accessible and assistive tech, and as a project that people with disabilities might want to put an oar in, early as possible in the project so that our own specs for usability are considered. If hardware is open source, we as people with disabilities might be able to hack and customize it more easily and to share those hacks with others, than we will be able to hack proprietary cameras.

webaim is running their second ever Screen Reader Users Survey. The first survey has been invaluable to web developers who want to write to how PWD actually use extensible technology, instead of writing to how standards designers think we use accessible technology. If you use a screen reader, please take the survey!

The survey mentions :

* Hal
* JAWS
* NVDA (free, open source)
* Supernova
* System Access or System Access To Go
* VoiceOver (Free)
* Window Eyes
* ZoomText

And asks for information on any other screen readers not mentioned. They didn’t list Orca which is free, open source, and scriptable.

Meanwhile, Glenda Watson Hyatt from Do It Myself Blog (Hi Glenda!) asks, So, how do we get programmers going on an open source screen reader for Macs? Let her (and us) know if you hear of any open source screen readers for Mac OS, please!

I tried a microphone on the desk but I couldn’t get the microphone close enough to my mouth so the voice recognition was useful. Which is why I was still using a headset. I looked around the Internet for a boom mic and couldn’t find anything for less than 500 bucks. Which just seemed outrageous to me. So I tried to find a workaround and found something that works for me. I found one of those magnifying lamps like this: http://www.overstock.com/Crafts-Sewing/Slimline-Magnifying-Lamp/3546202/product.html I’m sure that you can use a plain old desk lamp. The important part is the armature with the bend in it. I found a cheap one for about 15 bucks. Bought a regular desk microphone and brought them home. I had the magnifying glass and a lamp removed from the armature, wires and all. Leaving me with a cheap boom. I took the base off the desk microphone so I had a long thin microphone. I mounted the microphone on the end where the magnifying glass used to be. In my case there was enough tension in the bracket that had held the magnifying glass that I was able to just push the microphone into place and I had a boom mic for the cost of about 30 bucks. I haven’t had to, but it might be useful for others to add a little weight to the microphone end of the boom. I’d probably just tape some fishing weights or something similar to the armature to make it a little bit easier to articulate.

I use a mouthstick with my computer to supplement the voice recognition. This is probably too simple but, I thought I’d mention it. A mouthstick can be a pretty pricey item and I just can’t make myself spend that kind of money for a fancy metal or plastic mouthstick. So I go to Home Depot or some similar store and buy a couple of wooden dowels. I cut them to a useful length. Tape the end that will be in my mouth (I use electrical tape, but I’m sure other tapes will do). Then I tape one of those rubber finger cotts that people use when they need to thumb through lots of paper. The rubber end gives some friction and makes typing easier.

My last little gadget is what I call a “quiver” for my straw’s. I buy these extra long straws from a medical supply company that are about a foot long. They’re useful for drinking when you can’t lift a cup. The problem is I didn’t want these straws flopping around loose in my backpack picking up lint or whatever else found its way into my backpack. So I went to a home supply place and bought a length of PVC pipe that the straws would fit in. I bought two end caps to screw on both ends and now I have myself a container for two or three of my straws.

That’s about it for my first contribution to Hack Ability. I hope you find some of them useful.

Accessibility Camp DC Logo

Washington, DC, is fast becoming a breeding ground for BarCamps, and Accessibility Camp DC has just been announced for October 10, 2009.

The flowering of the Barcamp format in DC is a welcome change from gathering from think tank gatherings for white paper presentations and Congressional testimonies for policy research.  I’m looking forward to this event organized by John F Croston III to get to meet some of the ability hackers in DC, start an email list, start projects, and take over the world. You know, the usual Barcamp stuff.

Occasional posts, or just a guest post or two, are welcome!

You may be hearing soon from new Hack Ability bloggers: from Mel of [M]etabrain [E]ntry [L]og, from Haddayr, from Evester of The Deal with Disability, from Greg Elin from Life Labs / UCP, from Guy, from Minnie, and from Ricky Buchanan from ATMac (who contributed enormously to the setup and first concepts of this blog a year ago.)

Home and in a Spinal Brace

According to her story, the hospital personnel lied, withheld information from her, refused her any connection to the outside world, tried to put her on narcotics she didn’t need, and pushed her to get immediate reconstructive spine surgery. Their tactics seemed to have the goal of keeping Cortes in the hospital for a lengthy recuperation, paid for by her private insurance.

“Who will be liable if you leave here against medical advice?” a doctor asked, trying to intimidate me into obedience. “Yes, who, indeed?” I demanded to know. He fell silent, aware of the real answer. “If you leave against medical advice, your insurance will pay nothing of your bills so far, and it is in the many thousands! Your transport is medically unnecessary! We are the best qualified to operate on you! If you go to Boston, it is up to you to pay the expense, we cannot authorize it!” All lies, I would later learn.

Cortes contacted friends, community, and doctors through Twitter and her iPhone. She broke through the hospital’s paternalistic refusal to let her leave, and their lies and incompetence, by using Twitter to contact a wide community, a network of people with great resources.

I think that counts as a DIY hack. Though Cortes was not paralyzed, I think that it’s very interesting that her spinal injury factored into the hospital personnel’s attempts to take away her agency — her ability to make her own decisions. They classified her as “disabled” and thus felt free to take over her life in the name of “help”.

Most acoustic models used by ‘Open Source’ speech recognition (or Speech-to-Text) engines are ‘Closed Source’. They do not give you access to the speech audio and transcriptions (i.e. the speech corpus) used to create the acoustic model.

The reason for this is that Free and Open Source (‘FOSS’) projects are required to purchase large speech corpora with restrictive licensing. Although there are a few instances of small FOSS speech corpora that could be used to create acoustic models, the vast majority of corpora (especially large corpora best suited to building good acoustic models) must be purchased under restrictive licenses.

The goal of this project is to generate an extremely cheap, functional ECG machine made from common parts, most of which can be found around your house. This do-it-yourself (DIY) ECG project is different than many others on the internet in that it greatly simplifies the circuitry by eliminating noise reduction components, accomplishing this via software-based data post-processing. Additionally, this writeup is intended for those without any computer, electrical, or biomedical experience, and should be far less convoluted than the suspiciously-cryptic write-ups currently available online. In short, I want to give everybody the power to visualize and analyze their own heartbeat!

Check out Scott’s heart rate monitor as he plays Counterstrike:

Neat!

(via MedGadget)

I like to keep my knees warm, but don’t want to wear long underwear all year round. Regular legwarmers tend to feel too tight for me and also, a bit itchy. So I cut the toes off some very fuzzy chenille socks and use them over my calves or knees, and under my jeans. A more organized person might stitch around the cut edge, but actually, it’s fine without hemming.

In dollar stores sometimes, you can find these or fuzzy armwarmers and cut off the toe or fingertips. The very loose weave stretches further than regular socks or leg-warmers. They’re about 5 dollars. Without something covering my right lower leg, just the air touching it feels like sandpaper. Sandpaper on fire. An extra layer to stop the cruel knife-like breeze that other people think of as “air” is extremely helpful.

Happy warm knees, or warm calves, to you!