Living in the State of Stuck: How Assistive Technology Impacts the Lives of People With Disabilities

This is a book about people with disabilities and access technology. It's the first book I've seen on the subject of how disabled people relate to access technology. This author has done most of her work with spinal cord injuries, so in that sense it isn't about people with vision problems; but I was absolutely struck by how many parallels there are between issues faced by the blind, and the issues faced by those with severe spinal cord injuries or cerebral palsy. I was very gratified to see that we aren't the only population for whom technology is really a mixed bag. As with us, the technology they use can in some way define the way they interact with the general public so it affects the way they feel about themselves. (For example, I will not use speech products unless I am with family or by myself.) Just as in the general public, they have their technophiles and their technophobes.
As it is for us, their biggest problems are psychological and sociological, not their actual disability. I was struck by how similar their population is relative to people born with disability versus those who become disabled later in life and how that effects their response to technology. Having used a slate and stylus all through college, I will never forget how thrilled I was the first time I saw refreshable Braille! I knew immediately that it would revolutionize my life, and it did! During my former lives in high technology for blind folks, I was always dumbfounded when other blind people didn't have the same response to refreshable Braille that I had. Dr. Scherer's book talks about how people who were born with a physical disability relate so much differently to a motorized wheelchair and other technologies than those who become disabled because of an accident or disease. Well, that really describes my experience relative to refreshable Braille. Naturally, the people who didn't get as excited about it as I got were usually those who had been blinded at some point in life. To me, the ability to insert and delete text, to erase and write over something without making an unreadable mess, and the ability to locate something by Brailing in a search string was enchanting and magical. I suppose to someone who had used print, these features weren't anything new so they didn't have the same level of wow that I did. I do remember that other congenitally blind folks reacted to the technology much as I had, with awe and passion. I always thought this was really a function of Braille mastery, but now, after reading Dr. Scherer's book, I believe it's partly a matter of how someone who becomes disabled feels about the compensating technologies.

The quadriplegics in Dr. Scherer's book have similar coping issues and they have some of the same kind of employment history and problems that we blind folks have. Naturally, they have some of the same challenges with government benefits; and they have some of the same problems trying to fund the technology they need. They have similar issues with service animals. It seemed like they have some of the same challenges relative to human help versus technology. As with us, their "quality of life" is often a function of the quality of help they get from family, volunteers, and paid help and they don't want to completely replace human assistance with technology. They have very similar issues with privacy, dignity, self-sufficiency, and learned helplessness.

Dr. Scherer reports that one third of all access technology is abandoned. She discusses reasons for this and talks a good deal about how to remedy the problem by making sure the proper product is recommended and purchased. It is a crime to spend so much money on technology that isn't utilized! One of the saddest thing I know of is when someone goes through fire to get a piece of technology and then is so frustrated by it that they end up not using it. Dr. Scherer's theories on why this happens and what should be done about it are interesting indeed.