This is the autobiography of Ruth Sienkiewicz-Mercer co written with Steven B Kaplan first published in 1989.
Ruth is a quadriplegic with cerebral palsy and has been confined to a wheelchair or bed all of her life. She was born on the 23rd of September 1950 in Cooley Dickinson Hospital in Northampton Massachusetts.
Ruth is unable to speak and can barely move her limbs. She communicates using her eyes and she can make about 10 different vocal sounds. She also uses a computer with several words which she recognises and points to as well as boards with words on to communicate with other people.
Writing the book was a very slow and tiring process for both of them as Ruth’s only way of communicating with Kaplan was through these boards with words on them. She would point to a few words and then from those words Kaplan had to guess what Ruth was trying to tell him, and then she would let him know whether he was right or not. As you can imagine this took a long time to do. Ruth decided what went in the book whilst Kaplan wrote it.
Through the book she tells us about her upbringing. At first she lived at home with her family where her mother looked after her. Slowly she became a burden to her family, as her parents had another daughter and her mother had a bad back. Her father was away at work most of the day and they felt that they couldn’t give her the care and attention she needed so they decided to send her to a boarding school for children with special needs. This was a very expensive school, and Ruth was happy here. Her family could afford this as her father worked for the same people who funded the school and therefore only paid a fraction of what they were supposed to.
However her father lost his job and therefore her parents could no longer afford for her to go to this private school. After a short spell at home her parents reluctantly sent her to a state school. This was completely different to her old school. There were very few people working there and most of the women or girls there would lie in bed all day. The workers didn’t have time to try to understand the girls so they didn’t know what capacities each had. Therefore they were just left on the beds with nappies. When feeding time came the workers had no time to sit with them whilst they chewed their food. As a quadriplegic Ruth couldn’t chew very quickly and couldn’t feed her self so she was one of those who lay in bed all day and was barely fed.
When her parents saw her during the holidays they knew that Ruth wasn’t happy and she had lost weight, and she couldn’t use her muscles as she had previously done. They couldn't look after her so there was nothing they could do but send her back. Her mother wrote a series of letters complaining about the treatment but little was done to alter the situation.
In 1965 some changes were implemented in homes throughout the state. The girls or women living there with Ruth started to be treated differently and with more care. They were sat up in their beds, others where allowed to be in wheel chairs, even though they weren’t comfortable chairs, they gave them mobility. Others were sat in the middle of the room in a sort of play pen area where they could communicate with each other.
The book tells us about how Ruth’s situation went on to improve as different people were employed and how her life finally began to get better with these new changes that were taking place. She began to have speech therapy and exercises. Ruth went on to live in a group home with other residents she had met in the home. A carer would visit daily to help out.
Ruth now lives with her husband Norman a
paraplegic. Even though he can speak and has movement of his upper body they still have
carers coming in to help.
I enjoyed this book as it gives an insight to the difficulties she and other people in her position went through growing up in the 50’s and 60’s. We can also see the dramatic changes that occured in her life as a result of an increase in the awareness about quadriplegics and paraplegia in the US. It’s a real life story with a happy ending!