In August, last year, in the midsts of multiple personal issues, I decided I want to write something about the health care of EB people and about being a disabled person.
On the 1st of February 2014, I began to write about life from my perspective, as a disabled person. The result is an e-book that covers a broad spectrum of topics: health care, education, childhood, parenting, adulthood, life, death, sexuality and a lot more. My intent with this e-book is to allow people to understand better disabled people: how they might perceive different aspects of their existence, their needs and wants. Very few disabled people, in my opinion, actually write or talk about sensitive topics that are of interest to them. The e-book is written mainly from the perspective of a physically disabled person, because I am one, and it is based on my limited understanding of life and my observations and experiences. Please do not have high expectations about it. I did not intend to make an academic paper. However, I hope you will appreciate my modest contribution to the community of disabled people, along with the Propaganda images.
Download "About life from the perspective of a physically disabled person with RDEB" (PDF file, 4,9 mb).