I've been struggling a lot with the book "Wonder." It's popular. It's a "New York Times" bestseller. There's a reserve list for it at the library where I work--unusual for a children's book. It's also respected: one of Booklist's Best Books of 2013. I find all of this frustrating, because the book perpetuates misconceptions about birth defects--and a general lack of understanding about living day to day with many disabilities--and the book's popularity (especially as a children's book) means these misconceptions are being perpetuated in at least one more generation. I went to a new immunologist this week and I am so excited because she understands the my cleft was not "just cosmetic" and that the surgery I had to repair it, while incredibly important, was not the end of things--that medical problems related to a cleft palate are lifelong. This is something that almost no MD's understand. She "got" something else that medical doctors also rarely understand--the fact that my multiple disabilities interact and its important to consider the whole picture and not look just at the parts that officially fall into one's area of expertise. These are very important points--without this understanding, it is very difficult to get correct medical care--and poor care not only fails to solve problems, it compounds them.
The content on this website mostly comes from my perspective as a youth services librarian with disabilities. The further I travel along life's road, the more entwined these two parts of my identity become. Librarian: I have an MLS from Rutgers University and have working in public libraries for nearly 20 years. The focus on my career has always been youth services. Disabled: I've been disabled more than twice as long as I've been a librarian. My experience started at birth when I was immediately diagnosed with cleft palate. Also present was a non-verbal learning disability (NLD) for short. This was not formally diagnosed until I was 19, leading to years of frustration. My Tourette Syndrome was not present at birth, but surely started young as I don't ever remember living without it. The Tourette was also not diagnosed until adulthood, further compounding my frustration. Coincidentally, I was also diagnosed with IBD (more commonly known as Chron's\Ulcerative Colitis) at the age of 19. That was another easy diagnosis--as with cleft palate, they look and they see it.