Bright purple hair seems certain to make Liz Henry distinct from the crowd,
but it's another attribute that she came to linux.conf.au 2010 to talk
about: her wheelchair. It is, in essence, a machine to move her body
around. It's not surprising that she would like it to be easy to fix or to
hack on, but that is not how things are. Cars can be fixed easily; anybody
with a few skills can start a car repair business. But this cannot be done
with wheelchairs, which are much simpler devices. A wheelchair is a
, so the normal rules don't apply. Liz would like to
change those rules; she also wants the rest of us to understand why we want
to change them too.
People with disabilities may seem like a distinct group, but the fact of
the matter is that almost all of us will be people with disabilities at
some point in our lives. The average human, Liz says, will spend about
eight years coping with some sort of disability. The result is a huge
business, fueled by large amounts of money from insurance companies and
government. That business is not greatly concerned with empowering
disabled people; that's something we're going to have to take care of
ourselves. We cannot depend on nanobots to keep us going as our bodies
age; instead, we should be designing and coding for our future now.
People who want to hack their own disability solutions will find relatively
little useful information online. Why? Possible reasons include profit
motives in a highly lucrative industry, the perceived need for the
intervention of medical experts when creating solutions, and concerns about
liability should things go wrong. Disabled people also tend to be pushed
into the role of passive charity recipients and isolated from each other.
So what disability solutions exist come from the "medical industrial
complex." Most of us will need these solutions at some point, and we'll
want to be able to hack on them; the medical industrial complex is not much
interested in helping us to do that.
The best progress which has been made so far is in the areas of vision,
speech, and gaming. We're seeing less in mobility, so far. But, even
there, simple hacks exist: it's common to see users of walkers who have fitted
tennis balls over the feet to make them glide properly. (Your editor
notes, with amusement, that Walmart is selling
walker tennis balls for a mere $28 - the price of dozens of normal
balls). This is a hack which is easily done, easily noticed, and easily
copied, so it has spread widely. Pockets for crutches made of duct tape
were another example presented in the talk.
A good example of how things fall down can be seen in the area of ramps. A
ramp is not a complex device, but ramps must still be built properly if
they are not to collapse or dump their users on the floor. Information on proper
ramp building is discouragingly rare on the net, and what is there is not
open to contributions. Other bits of interesting information - such as the
bottle prosthesis - are available, but what we're seeing, still, is
relatively small attempts. There's no real model for building community
around this kind of information yet.
Disability-friendly software, too, is not an easy hack; accessibility tends
to be treated as a last-minute add-on. Web site accessibility, too, is
often an afterthought, and tends to be user-focused. This approach tends to
lead to sub-standard solutions, but it also fails to lead to a free,
do-it-yourself culture. We need good accessibility for developers too.
Liz talked about a number of projects aimed at making life better (and more
hackable) for people with disabilities. Consider voice synthesis and
screen reading: much of what's happening in this area is proprietary, but
there are also projects like Festvox, Fire Vox, NVDA, and the tools at Full Measure (Speakup was not mentioned). Other
interesting projects include:
Liz also mentioned the BBC
accessible newsreader; she wishes that the BBC would release the code
so that it could be incorporated into content management systems and made
On the other side, there are antifeatures which make life harder for those
who would hack better solutions. These include systems which people with
disabilities cannot contribute to and one-off solutions which cannot be
extended or improved upon. Especially harsh words were reserved for those
who exploit vulnerable people; there is an awful lot of incredibly
expensive assistive technology out there. "Freaking out about liability"
is also an antifeature; Liz feels that many of those concerns are greatly
overblown. Selling out to industry - going for patents and profit rather
than making technology available - is also a step in the wrong direction.
As an example of good and bad ways of doing things, Liz contrasted the Free
Wheelchair Mission and Whirlwind Wheelchair
International. The former makes dirt-cheap wheelchairs out of lawn
chairs and bicycle wheels, then ships them by the container load to poor
countries. It seems like a good idea, but dumping all those cheap chairs
devastates any local market that may have developed. When the chairs break
(which tends to happen soon), there's nobody left to help keep them going.
Whirlwind, instead, is focused on partnering with local industry and
sharing information, creating a more hackable solution with more people to
hack on it.
The core message from the talk was that disabled people are hackers by
necessity; we should bring them in, get their input, and enable them to
create their own solutions. Their solutions will become our solutions. We
should, Liz says, prepare to open-source our way out of the retirement
prisons which are waiting for us.
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