Quality of life is a term that deeply disturbs me. I have witnessed people make decisions that have resulted in the death of another all because of judgments regarding the individual’s “quality of life”. I have been changed by experiencing a situation in which a typically happy child, who could have been described by many using the term “vegetable”, began to cry when hurtful information about a family member was shared in his presence. It is for these reasons that I am last on the official, notarized list in our family regarding who can make medical decisions for my parents one day. In essence, it is up to my brother to “pull the plug”, a decision which will be equally hard for him to make one day.
Despite all my opinions going into this read, I still consider myself changed after reading this book. “One of Us” by Alice Domurat Dreger focuses primarily on conjoined twins and on what is “normal”. Dreger asks the question: who are we to determine normal? Who are we, as individuals with typical anatomy, to determine quality of life? Alice describes her own work by stating, “The question that motivates many of my projects is this: Why not change minds instead of bodies? ” Countless stories of conjoined twins are shared as well as details on surgeries and many statistics. She describes many adult conjoined twins who have no interest in being separated- this is their normal.
There are many other groups with abnormal anatomy mentioned, but conjoined twins are the primary focus of the book. I really enjoyed this book because it pushed me to view things from a different angle.
This book fulfills the “book from the library” category on the 2016 Reading Challenge!