Parents of children with disabilities often turn to the internet and social media sites for information and support following a diagnosis, injury, health issue or traumatic childbirth. Those who establish themselves via a blog, other social media or website may be both admired and highly criticized.
It is more difficult to read good intentions into written messages and to forgive mistakes made by parents who share their stories and their children's lives with readers they will never meet face to face. It is a great responsibility to both protect family privacy and provide accurate, up-to-date information about a child's condition, disability, treatment and therapy for those who do not have access to the same resources and options.
Parents of young babies and newly diagnosed children may not be aware of disability issues that adults with their son or daughter's condition have found difficult since childhood. There is also a great diversity among parents and families on a range of issues that have nothing to do with a child's diagnosis. Of course it is absurd that anyone makes assumptions that most advocates or family members of children with disabilities believe the same things. There is as much diversity among families as there is in the general community. Diversity may be even greater because the child may be the only person in the family or neighborhood with a diagnosis.
Getting started or growing up without knowing adults and other children who share the cultural idiosyncrasies of disability can be very isolating and leave the child without a cultural reference until adulthood. It is even more important for the child to have the diversity as well as the cultural fabric of disability recognized as it is for their families, teachers and neighbors to be aware. Acknowledging the similarities as well as the richness of differences in a disability community may keep parents from making unfortunate mistakes based on inexperience or even prejudice that they may be unaware they have had before their own child was diagnosed with a disability.
Browse at your public library, local bookstore or online retailer for books like No Pity : People with Disabilities Forging a New Civil Rights Movement
, The New Disability History: American Perspectives (History of Disability),
and The Disability Rights Movement: From Charity to Confrontation
