Understandably, Lillard lives in a constant state of anxiety over the functionality of her iron lung. But she said the company responsible for servicing the device, Philips Respironics, hasn’t been much help. She recalls one time when a repair person disassembled the machine to make a repair, then tried to leave before putting it back together. Another technician took it apart and couldn’t figure out how to fix it, so Lillard had to call another mechanically skilled friend, Jerry House, to help.Brown added, later:
When I met with the Randolphs, Mark gave me photocopies of old service manuals and operating instructions. He filled me in on little-known history about the Emerson iron lung and its inventor, whom they met at a Post-Polio convention. I realized what each of these iron lung users have in common are the aid of generous, mechanically skilled friends and family. And that’s probably the main reason they’ve been able to live long and full lives, despite the hardships and anxieties of depending on aging machinery to survive.READ THE WHOLE THING.
But also read this amazing thread by Maria Town, who engages the broader issues of when tech for people with disabilities goes obsolete.
9 - @tjenningsbrown does a great job noting the ingenious ways that iron lung users have to hack their equipment to keep it running and the scrappy networks that get organized to make this possible.— Maria Town (@maria_m_town) November 26, 2017
This is not just something that folks using 50 year old equipment have to do.
This example struck close to home.
15 - Just yesterday I spoke to a disability advocate whose brother was also disabled and used augmentative and alternative communication to speak. He was trained on a particular system that he could use rather fluently. It was deemed outdated, and PTs were no longer trained on it— Maria Town (@maria_m_town) November 26, 2017
