Nothing about Us Without Us: Developing Innovative Technologies For, By, and with Disabled Persons by David Werner
My rating: 4 of 5 stars
In my search for books about people with disabilities, I came across this, which focuses on physical disabilities. I work with individuals who have intellectual disabilities, but I've heard the phrase this book is named after. I found this guide to have a lot of helpful things to say about the attitudes and approaches to disabilities, and a lot of insight into how different they are in other settings.
Nothing About Us Without Us is about a program in Mexico called PROJIMO, where assistive devices are made for people with physical disabilities. It discusses the various barriers to the use of devices for many of the people they serve, and how they address those issues. The devices are fitted carefully, both to make sure they're doing what they should, and to make sure they'll function in people's everyday lives. The author points out several times that refusal to use a device has many other reasons, other than that the person is simply being stubborn or proud, and addressing the real reason often leads to an improvement in the person's life.
Another lesson learned within the text is of the strength-based approach, where a rehabilitation worker focuses on what a person can do, rather than on the disability. Most of the workers who make items in the PROJIMO workshop are, themselves, disabled, which leads them to insight about why a tool may not be working as well as those who don't use it may want it to. It also helps the people being fitted for devices gain confidence, seeing others like them able to lead full and rich lives thanks to their innovations.
The last section of the book discusses how a disabled child's peers might help that child learn and grow and manage the disability. It discusses the home for young women with intellectual disabilities being tapped to provide daycare services for a severely understaffed state-run home for children with physical disabilities. It shows how young people often bond during their time at PROJIMO, and both benefit from their partnership. It gives an example of a young man feeling needed for the first time in his life because he has the strength to push people's wheelchairs. And it discusses children with no disabilities delightedly playing with their friends to help teach them games that will straighten their limbs or add muscle where they need it.
The book's terminology is sometimes outdated, and it doesn't consistently use people-first phrasing ("a person with a disability" as opposed to "a disabled person"). Some of the words chosen in the text may offend.
Overall, though, I found this an insightful guide into why First World solutions don't work in all settings, and of the unique problems with disabilities facing certain communities. After reading this book, I would strongly advocate that organizations who wish to help people in other settings with disabilities empower their communities to help, instead of stepping in to throw solutions at a problem they may not fully understand.
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