Rachel in the World: A Memoir

by Jane Bernstein

What happens when love is no longer enough? Jane Bernstein thought that learning to accept her daughter’s disabilities meant her struggles were over. But as Rachel grew up and needed more than a parent’s devotion, both mother and daughter were confronted with formidable obstacles. Rachel in the World, which begins in Rachel’s fifth year and ends when she turns twenty-two, tells of their barriers and successes with the same honesty and humor that made Loving Rachel , Bernstein’s first memoir, a classic in its field. The linked accounts in part 1 center on family issues, social services, experiences with caregivers, and Rachel herself--difficult, charming, hard to fathom, eager for her own independence. The second part of the book chronicles Bernstein’s attempt to find Rachel housing at a time when over 200,000 Americans with mental retardation were on waiting lists for residential services. As Rachel prepares to leave her mother’s constant protection, Bernstein invites the reader to share the frustrations and unexpected pleasures of finding a place for her daughter, first in her family, and then in the world.

Genres: Nonfiction, Memoir

280 pages, Hardcover

First published January 1, 2007

About the author

Jane Bernstein's new novel, The Face Tells the Secret, was published by Regal House in the fall of 2019. She is the author of five previous books, among them the memoirs Bereft - A Sister's Story, and Rachel in the World. Jane is a lapsed screenwriter and an essayist whose work has been widely published in such places as Creative Nonfiction, The Sun, and the New York Times Magazine. In 2018, her essay “Still Running” was chosen for Best American Sports Writing 2018, and Gina from Siberia, a picture book she wrote with her daughter Charlotte Glynn was published. Her grants and awards include two National Endowment Fellowships in Creative Writing and a Fulbright Fellowship. She is a professor of English and a member of the Creative Writing Program at Carnegie Mellon University." Visit www.janebernstein.net to read some of her shorter work.

Reviews

[Riley · Rating 4 out of 5]

I have to admit, I was expecting something a little different from this book. Jane does say in the introduction that this is Rachel's story, not hers. But what I loved most about LOVING RACHEL was Jane's perspective--her emotional journey throughout the process of Rachel's diagnosis. In this book, Jane is still the lens through which we see the story, but the focus is definitely on Rachel.

That said, this is a very well-written book, and I enjoyed reading about Rachel growing up. I also enjoyed getting to read more about Charlotte, Rachel's older sister. A good friend of mine has a little sister with special needs, and she also had to go through this--getting her sister ready to move out, to be “independent.” While my friend's experiences were not exactly the same as Jane and Rachel's, there was an underlying foundation of struggles that they shared.

What really impacted me while I was reading was realizing just how constant the battles are for parents of kids with special needs. They don't ever get rest, because the system is constantly changing, which means they have to stay on top of it and make sure their child is getting the best possible care. By the end of the book, I had this mental image of Jane's family--as a boat, a ship, a great ark that is trying to weather a great storm. The boat makes it to shore, but definitely a bit battered.

On a personal note, it was interesting to realize that Jane wrote this book while she was my teacher. At some points I could map my relationship with her to the events that were happening in the story. She mentions once feeling like she is doing everything badly--parenting, teaching, writing, living. But I can say this with certainty: she was not teaching badly. She was, from the start, one of the professors that I most enjoyed and admired.

Overall a good read, and I am glad that they included pictures. I don't think this book has the universal appeal of LOVING RACHEL, but anyone who read that book will want to finish out the story with this one.

[Andrew · Rating 3 out of 5]

Certainly this book is an idea whose time had come: an unsentimentalized view of mental retardation (not, for example, referring to them as "heaven's special angels" as one wag on the book's back cover puts it). Bernstein is surprisingly honest about her dismay over finding out her child, Rachel, is retarded shortly after she is born. Bernstein also does not gloss over the less charming aspects of Rachel's behavior as the child grows up to become a young adult; Rachel is obnoxious and drives most people away, including caregivers as well as other disabled people in the system. Throughout the book, we are given a rarely-seen glimpse into the often difficult relationship between a special-needs child and her family.
As events wear on, the struggle with the various governmental services designed to help parents of special-needs children (and the ever-dwindling financial resources for such services as the Bush era kicks in) becomes the central focus of the narrative. Though a little of this particular subject matter goes a long way, it does give a glimpse into some of the crucial failures of the system.
Still, I can't help having this nagging sense of Narcissism on the part of its author.

[Jamie · Rating 5 out of 5]

This is an incredible book. Several years ago I read Bernstein's earlier memoir called Loving Rachel. I remember being quite moved by the book. This time, she chronicles life as Rachel moves toward adulthood and the services for people living with mental retardation are utterly inadequate and often completely inappropriate if one is even lucky enough (or unlucky enough) to qualify for services. Bernstein's account seems strikingly honest, revealing the gamut of feelings that a parent and child in these circumstances might experience. Read this book and know that most of the Rachel's in this world are "living" in state institutions and unable to realize their constitutional right (see Olmstead) to living in the least restrictive environment or are living with others who may not be able to support a positive, meaningful life for them.

[Cate · Rating 3 out of 5]

Many of the books I've found about children with disabilties focus on the early years. It was refreshing (if somewhat depressing) to find this book about a child growing up and becoming an adult, and how the systems in place aren't always adequate. I also appreciated the author's honesty. So many books portray the parents of special needs kids as endlessly patient and saintlike, so it was nice to hear her admit to frustration and impatience.

I'm going to track down her first book, Loving Rachel.

[Angie · Rating 3 out of 5]

This book was a Christmas gift. It’s probably not something I would have picked up on my own, but it was a quick and interesting read. It’s the follow-up book to Loving Rachel which chronicles a family dealing with their newborn daughter’s severe mental impairments. This book continues their life story from the time Rachel is about 6 until her early 20’s. Written by Rachel’s mother, it’s a brutally honest retelling of the ups and downs of life with Rachel and how difficult it is to help her gain some amount of independence.

[Jill · Rating 3 out of 5]

So far, I am loving this book. It increases my awareness from the parent perspective for raising a child with disabilities.

I really enjoyed the struggle of the parent and the eye opening process of living with a child with a disability and worrying about adult services and placement, I got a bit bogged down in the middle.

[Abby Reynolds · Rating 4 out of 5]

This book depicts a mother's perspective of her daughter's growing up years. The intriguing thing is that her daughter, Rachel, has an intellectual disability. The mother must decide if she will try to care for Rachel for the rest of her life or if she can find a way to let her be out in the world on her own.

[JennyB · Rating 3 out of 5]

To be honest, I bought this used because the cover has a picture of Pittsburgh in the background. Must be worth reading, right? My questionable reason for choosing it paid off this time: it's an interesting and brutally honest portrait of what it's like to raise a mentally challenged child. I accurately judged this book by its cover!

[Patricia · Rating 4 out of 5]

Read the original, "Loving RacheL' and waited for this sequel for years.

[Christine · Rating 4 out of 5]

Rachel in the world is a great book. I feel like the author is writing about my life. Very frank and to the point.

[Jim · Rating 5 out of 5]

funny, sad, fascinating, informative, draining, etc: all of the adjectives. a great read about a subject that is pretty much swept under.

a great writer baring everything

[Janet · Rating 4 out of 5]

I work in human services, and this book gave me an invaluable description of some of what the parents of people who have developmental disabilities go through.