[Noisebridge-discuss] Hacking disability

Romy Ilano romy at snowyla.com
Thu Feb 13 18:10:17 UTC 2014


Liz,

The slides are very cool! I love it!

warning: this is long, but I intend to put this into the wiki

In addition to a talk,  what about immersive hacking experiences? Maybe
"able-bodied" people would become more engaged if they had to walk around
the space on crutches, in a wheelchair and note what is and isn't
accessible.

   - Maybe I can hold a new event titled:* "5 minutes of engagement"
**(engaging
   the audience versus a talk)*, similar to "Today We Learned" at
   SudoRoom... it could be an extension of a talk that someone has already
   given
   - have participants walk around NoiseBridge in crutches...
      - have people exploire Noisebridge in a wheelchair and, as you said,
      see where the tight corners are
      - brainstorm ways to inform people of when the elevator is needed.
      Could we stick a bluetooth device on that thing so it's easily apparent
      whether it's working or not? that way a wheelchair person/someone like me
      won't waste time coming all the way out to NB and then finding we're
      blocked off.
   - I love how the slides address the "medical industrial complex" - all
   for cheaper, better, faster ways to use customized devices!  - as an "able
   bodied" person I was never aware of this. Some doctors might feel
   constricted & unable to help with medical device hacks for fear of getting
   sued as well.

*Personal Narratives*

There are so many little things that stick out to me that are worth
mentioning in this email:

 I was at a bus stop, and the bench was blocked off by dirt, so I couldn't
easily get there with my knee walker. I couldn't get to it from the street
since it was elevated from the street, and I couldn't get my scooter over
the sidewalk edge... so I sat next to the bus stop, not far away, but in
the area that was immediately accessible to me.

The bus just passed me by because I was two feet away from the bench. That
was really weird! I guess stuff like this happens to people in wheelchairs
lal the time.

*Pain*
Thanks for bringing up the topic of pain. I'm much better now, so I'm
leaving tourist status, but in the initial weeks after my operation on my
ankle, yes! I did feel a lot of pain. And it wouldn't be immediately
visible to people around me.
As an "able bodied person" I just never was aware of this. Distances
between bus stops were also much less intimidating.
I'm sure there are weird ways to simulate that =D hacking an S & M device?

Sidewalks + Streets

Well kept streets and sidewalks that wheelchair wheels can roll over are so
much more important now. I completely sympathize with  folks in wheelchairs
facing bumpy, cracked, irregular sidewalks. It can mean struggling for 2
minutes over 10 feet or cruising over in 20 seconds... not to mention the
possibility of getting tipped over / tripping / getting stuck.





=============================

Romy Ilano
romy at snowyla.com




On Fri, Feb 7, 2014 at 1:05 PM, Liz Henry <lizhenry at gmail.com> wrote:

> It is very interesting even as a tourist to find how your perceptions
> of distance and space will change. Going across a room or something
> you wouldn't think twice about can suddenly be like climbing a
> mountain. I think the "tourist" awareness can help with long term
> awareness of things like keeping clear pathways and just knowing that
> other people can be in pain sometimes, factoring that into your social
> awareness.  But it is also useful for thinking about DIY which lots of
> people with physical impairments or challenges have to do because
> standard things don't work and custom ones are not available or way
> expensive. There is a practical level but also a possible political
> level in which to think about this stuff....
>
> Romy you might like this 5 minute talk i did on hacking and disability
> activism,
>
> http://www.slideshare.net/lizhenry/ignite-oscon-your-flying-jetpack-1802527
>
>
>
> - liz
>
>
>
> On Tue, Jan 21, 2014 at 2:18 PM, Romy Snowyla <romy at snowyla.com> wrote:
> > I love this discussion. I just got out of surgery and will be non weight
> > bearing for several weeks.
> >
> > There's a world of difference between sympathy and empathy. Sometimes
> > sympathy however well intended is mixed with pity.
> >
> > But   I'm beginning to empathize and I find this a very positive
> experience.
> >
> > I'll most likely be on a knee scooter the next time I visit noisebridge.
> The
> > elevator has a completely new meaning to me :)
> >
> > Many medical devices are expensive because they need to be certified by
> the
> > FDA and anything proprietary is inherently more expensive.
> >
> > So any modifications by folks (especially those outside of a well funded
> > research university or start up) are very interesting to me.
> >
> > You can't get more hacktastic than that!
> >
> > I'm saving a lot of money even using garbage bags as opposed to the $20
> knee
> > cast covers they sell online.
> >
> > I'm also impressed by the many hacker modifications for customization.
> It's
> > all pretty neat. Thank you for welcoming me into your world ... Even
> though
> > I'm just a tourist ..,
> >
> > Sent from my iPhone
> >
> > On Jan 21, 2014, at 12:50 AM, Nana <nana at yak.net> wrote:
> >
> > hi, Nana here:
> > broken hip 2 year ago, titanium implant. Wheelchair then 1.5 yr on
> crutches,
> > now 6 mo w/ cane. (plus emphysema) Lots of tiredness. Also oldness.
> >
> > Unable to access NBridge unless elevator running. (frequently isn't).
> > We (Jake, Liz, Me} made some attempts to fix a found scooter w/o success.
> >
> > I need a scooter at least part-time, & to figure out the logistics of
> living
> > up some stairs. Someone recently showed me picture www.travelscoot.com &
> > want to price and try one out. Other interesting questions ie moped =
> > bicycle so legal on sidewalk, etc.
> >
> > welcome to the club  ;--)
> >
> >
> > On Mon, Jan 20, 2014 at 12:07 PM, bandit <bandit at cruzio.com> wrote:
> >>
> >>
> >> > I just double fractured my ankle and will be implanted with metal
> plates
> >> > like the terminator soon!
> >>
> >> ouch. good job! Do it *right*!
> >>
> >> >
> >> > I'll be testing knee scooters & hands free crutches as i go non weight
> >> > bearing ..
> >>
> >> Need to change your name to peg-leg...
> >>
> >> >
> >> > For lack if better semantics has anyone else hacked their legs?  Made
> >> > their own crutches or wheelchairs at noisebridge ?
> >> >
> >> > I'm tentatively labeling this hacking disability :: sorry if I offend
> >> > anyone. I'm able bodied so I feel like a tourist although my myopia is
> >> > so
> >> > bad I'm legally blind without my coke bottle glasses so maybe I am
> >> > disabled visually at least :)
> >>
> >> Na.. welcome to the cripple club. Always like to see temporary members -
> >> keeps folks humble.
> >>
> >> I am interested in any experience with the "hand-free" crutch for a knee
> >> injury- seems would put a lot of pressure in the knee joint, unless the
> >> stress was on the thigh. That was the most pain-in-the-ass part of
> >> breaking my left knee, and no left hand. I lashed the crutch to my arm,
> >> but it was not an optimal solution.
> >>
> >> I's so blind I can't see my left hand, and I need new glasses - I see
> two
> >> right hands. (hehe...)
> >>
> >> ... bandit
> >>
> >> >
> >> > Sent from my iPhone
> >> >
> >>
> >>
> >> --
> >> bandit at cruzio.com
> >> 505-228-8197
> >> bandit.name
> >>
> >> I am a systems engineer, specializing in:
> >> - Mission-Critical embedded systems
> >> - device drivers
> >> - control and data acquisition systems
> >> My stuff *works* - *all the time*.
> >>
> >> Member: INCOSE.org, PACA.org, IEEE.org, CaliforniaConsultants.org,
> >> quelab.net
> >>
> >> And to support my son: Proud members of the New Mexico .NET User Group.
> >> Please go to the community website at www.nmug.net.
> >>
> >>
> >> _______________________________________________
> >> Noisebridge-discuss mailing list
> >> Noisebridge-discuss at lists.noisebridge.net
> >> https://www.noisebridge.net/mailman/listinfo/noisebridge-discuss
> >
> >
> >
> > _______________________________________________
> > Noisebridge-discuss mailing list
> > Noisebridge-discuss at lists.noisebridge.net
> > https://www.noisebridge.net/mailman/listinfo/noisebridge-discuss
> >
>
>
>
> --
> Liz Henry
> lizhenry at gmail.com
>
> "Electric ladies will you sleep or will you preach?" -- Janelle Monae
>
> "Without models, it's hard to work; without a context, difficult to
> evaluate; without peers, nearly impossible to speak." -- Joanna Russ
>
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