I'm working on my PhD in Information Science (which is the study of "things we call information" and "how we use information") at the University of North Texas. Although many people study something relevant to themselves or their jobs or family, I have decided to tackle the issue of wheelchairs/scooters/mobility devices and information simply because a woman with multiple sclerosis came up to me when I was demonstrating a Segway and asked if people with MS could use those.
I didn't know -- and I didn't know why she'd never heard of this before, because it seemed like such a dandy item. One question led to another and then to another and another and so on. That's how scientists think. Give me an item and I'll have a hatfull of questions about it in no time at all.
So... I'm trying to find people who would answer my survey. If you use a chair (or scooter or fancy walker or even a prosthetic leg) or have someone in your family who uses any of these -- or if you assist someone who has one -- could you send that person (or yourself) to my Survey Monkey link: Mobility Device Information Survey.
If you know someone who fits that description (uses a chair or scooter or fancy walker or prosthetic leg) I'd appreciate it if you'd send them the link.
There's just 20 questions and a place where you can add your email if you'd like to read a short essay on what I found after the interviews are finished (sometime in March.)
Why "networks of the damned"? Because after listening to the tales of some 8 people (I need 35 more responders) I am beginning to realize for those of us in the United States that the very WORST situation is to be disabled and be working in a low wage job. These are workers -- people who want to work and who are very dedicated, who will stick with the job through thick and thin. They make too much for Medicare/Medicaid, their jobs usually don't offer insurance, and they deal with equipment that's slowly falling apart while struggling with a system that is either overworked or under-knowledgeable.
The stories make me angry -- but there's stories, too, of people who "get around" the system and stories of people who innovate in the face of hardship.
I have been fortunate to have two answers from people in other parts of the world, and am trying to see if I can get interviews with locals who are immigrants or who are very poor -- and then interview some with good jobs and good insurance.
Anyway... if you know anyone who could help, would you pass my link along, please?
Thanks so much!
KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.