Pearl has had epilepsy since she was a child. She is now in her 40’s and living in an assisted living facility, not by choice though. She was told when she was younger with the severity of her seizures that she wouldn’t be able to do what most people do in life – Get a job, Get married, live a “normal” life.
Although Pearl is intelligent, and is happy for the most part thanks to her boyfriend Sonny, she still yearns to have as normal as a life that she can have. They are in love, and want to get married. But all of that is changed, when Pearl writes to her Senator sister Susan. Susan definitely has other plans, and they include Pearl not getting married.
Susan for the most part has resented Pearl from the beginning, at least from the start of her seizures and everyone paying more attention to Pearl and not her. Even while they were children living in a small town, Susan always made sure that Pearl had no friends. Even going so far as saying and doing things that would make her shunned from their school. Now grown, and trying to make it on her own – She wanted to be a famous Hollywood actress, she decided that a career in politics was easier. Then later on her dream had come true. She is now a senator, and she will protect whatever she had built up, regardless of the consequences. And that means that she hides the things that would hinder her prominence in society – regardless of people feel about it…It is all how she wants to be seen.
After Pearl’s letter, Susan decides she needs to further “tie down” Pearl. She calls the institutions director, who she has been paying off for years now, and tells him that Pearl needs further intervention – no outside visits, no special trips, nothing.
Unknown to Pearl she goes to work at the factory, anticipating to see Sonny as she does everyday since they work at the same place (and where they met) to find that he isn’t there. She figures that he was sick of something else, and goes on with her day. Later on that night her and Sonny had made plans to meet outside the facility where she lives. He is waiting for her, and as she tries to sneak out of the facility, she has a terrible seizure (from being so scared of being caught) and that stops the visit.
As things progress, Pearl is terribly distraught because she cannot see Sonny, other things are happening too – Nurses are changed around, Sonny is never at work anymore, and she finds out that she has a niece. Even the social worker is behind Pearl 100% but his hands are tied, based on what the director has been saying and ordering staff what to do.
Pearl gets so angry, and upset that she sneaks out of the facility and finds Sonny’s apartment. She goes and calls her niece. The thing is that her niece never knew she had an aunt to begin with and thinks it is a crack call. As she calls her mother Susan, she is finally told that she does. And this starts the the story of Pearl and Sonny.
Through insurmountable barriers – family secrets, the perceptions that people with disabilities have, and convincing people that have been previously set by other assumptions, are large and things are at stake – for everyone involved.
This book from the beginning has been for me a somewhat personal one. 1. My mother had epilepsy, and was medicated for it. And I know many people from the community as well that work with people with disabilities in their homes. I have myself have worked with people with disabilities as well. My one thing about this book was that the medications that the author has Pearl on, the date at which it is dated is around 1989**. At that time the drug Phenobarbital was being or has been already phased out for more modern types of medication that was coming onto the market at that time. Here in Canada, we don’t have institutions anymore that house these people anymore. They are in the community, living their lives as normally as possible.
It was well written, and the story I suspect would have or will give many people hope of being able to live their dreams of living an independent life as much as they can, if they are able to. We shouldn’t shut people with disabilities out of the real world they have just as much right as we do to live how they want to, without prejudice.
Peripheral View is available May 1, 2009.
** I have since corrected this error in date from 1998 to 1989, It was a mistake (typo) on my part.**