I've been reading this book for over a month now, digesting it slowly. It's written in a style that invites quick gulps here and there, but I quickly learned that too many gulps left me unable to really process each chapter with the honor it deserved.
Honor? Yes, because this is a story of survival of the instutitionalization of a small child with cerebral palsy. Rejected by his maternal grandfather who was the secretary general of the Spanish Communist Party, Ruben is sent to a children's home in Russia, an old folk's home, hospitals and orphanages during a harrowing childhood. He alludes to the complete and total abandonment that engenders. Although in one "good" children's home he was given lessons and met some kind people, life in an institution lacks any semblance to life in the larger community. This becomes apparent toward the end of the book when he writes of being "de-institutionalized" and traveling.
Ruben describes very well how he began to see himself through the eyes of others, whether it was in a disability hierarchy of the "ambulatory" versus the "non-ambulatory" or through the eyes of staff, visitors and teachers who were mostly able bodied. His writings lead the reader into an inevitable understanding of the world he lives and survives in. One chapter talks about how one will be okay if one "has hands", observing that those who do fare much better by surviving and sometimes helping others. There is the woman in the old folk's home who devotes herself to 32 years to feeding others, for example, and the touching story of how one child helps a new boy with CP simply saying it is easier for him to do the task.
The book also deals with the very real facts of being institutionalized: being told by helpers not to ask for too much, which caused the young boy to refuse to eat and cut down on the need to eliminate; the description of the third floor "goner's" area in the old folk's home, where being sent was a death sentence; and the touching story of how staff finally allowed the children to keep a dog named Rusty through the efforts of one kind nurse and a very persistent child.
Throughout the book there is the very real undercurrent of what this child faces at the tender age of ten - a future of being placed in an old folk's home to die, left without food on a bed. He sees others leave the children's home when they age out and if they are non-ambulatory like Ruben, knows this is their fate and his. He writes how everything changed for him once he found out they would take him to that "awful place". "To become good took very little, just the tinest thing," he writes. "Something almost anyone, even the stupidest person, could do. I just had to stand up and walk."
In a chapter called "Never", Gallego writes of all of the things his disability prevents him from doing. It is a rare foray into that type of discourse for him since the book, in general, emphasizes how those with disabilities are more resourceful than the able bodied (as in a wonderful story about how the children in the home are disgusted by a boy with a broken leg on crutches who runs from a fight when he only has a broken leg). Ruben then writes about traveling to America and experiencing the freedom of having mobility for the first time in his life - having access to an electric wheelchair and accessibility which permits him to see the nightlights for the first time - be out at night and be out during the day to do simple things like get a meal. These two chapters in juxtaposition are a fascinating look at the difference between what limits a disability imposes and those that are imposed on people with disabilities through our social systems.
No comments:
Post a Comment