Fairview Press has published a wonderful book for children. Sisters, Brothers, and Disability, A Family Album, by Lydia Gans. It gives us a matter of fact glimpse at the lives of families who live with disability. There are engaging black and white photographs of brothers and sisters in their daily lives. There are brief vignettes accompanying the photos. Parents and siblings voice how their lives changed when disability happened in their family. We also hear from children with disabilities.
In the introduction to the book, Lydia Gans states that, “This book could not have been written twenty-five years ago. In the United States, it is a relatively new concept that children with disabilities should live at home with their brothers and sisters, go to public school, and play with neighborhood children.” The book is dedicated to Ed Roberts; “He was a good friend and an ardent fighter for independence”. My own personal thanks to Ed. Because Ed fought to receive an education, it was easier for me to go to college. Yes, things have indeed changed over the past twenty-five years.
In picture and story, the author has given us a brief glimpse into the lives of children with disabilities and their families. Life is stated in matter of fact terms. A variety of disabilities are portrayed. There is only one story of sensory loss, that of having blindness. There is no portrait of a person who is Deaf. This exclusion is, to me, a great loss. Was there no-one, who was Deaf, who wanted to be in a book about disability because that person saw him (her)self as coming from a different culture and not part of the disability community? This is an important concept that the disabled and non-disabled alike need to have a better understanding of.
The way disability enters a family is described matter-of-factly. There is a good balance between accident, genetics, and illness as the cause of disability. Disability is shown for what it is, a part of life and living.
There are families from a variety of cultures, economic backgrounds, rural and urban, from all over the United States. We also are given a brief glimpse into how families deal with obtaining services. Some fare better than others.
Another important concept that the book draws out is that siblings and parents need support. The families who are able to deal with disability the most positively are the families that seek out support groups and support from extended family and friends.
The story that most touched me was the young boy who, without being asked, makes sure his neighbor, a young classmate with a disability, gets from his home to the bus safely every day. He also accompanies the classmate home after school. No thanks necessary, no payment, just a true random act of kindness.
There is one portrait of a young boy who has brain injury because his father, while addicted to drugs, bashed his head in with a baseball bat. This is told in a very sensitive way, with assurance that the father is imprisoned and cannot harm anyone again. This may be a little too frightening for more sensitive children.
Sisters, Brothers, and Disability, A Family Album, portray 26 families in their daily lives. This is an excellent resource for teachers with students K-3. I would highly recommend it for any classroom or family with young children, who want to know more about disability, children and their families.
Linda Larson is a Disability Advocate, Teacher and Parent