Marcy Sheiner

Perfectly Normal: a Mother's Memoir Marcy Sheiner

PERFECTLY NORMAL addresses with unprecedented honesty a mother's experience raising a child with a disability-hydrocephalus. This condition causes spinal fluid to accumulate in the head, making it grow, sometimes causing brain damage. A surgical procedure developed only a few years prior to Daryl's birth has kept him alive; he is now thirty-six and lives a fully independent life. The author was nineteen when faced with this difficult life situation. She worked through years of denial, anger, resentment, and fear; she battled with the medical profession, the educational system, and the vast array of social service providers who invaded her life. Her journey radicalized her with regard to the way society treats people with disabilities; by the time Daryl reached adulthood she was involved with and writing about the Disability Rights Movement. She speaks with absolute candor about personal difficulties and social injustice. She tells her story with unflinching self-examination, with no attempts to be "inspirational." She shows what it's really like to raise a child with a disability in America, particularly in the uncaring social climate of thirty years ago, some aspects of which persist even today.