Rachel in the World: A Memoir

by Jane Bernstein

Book Overview

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...

• Format: Paperback
• Language: English
• ISBN: 0252076826
• ISBN13: 9780252076824
• Release Date: January 2010
• Publisher: University of Illinois Press
• Length: 280 Pages
• Weight: 1.10 lbs.
• Dimensions: 0.7" x 5.6" x 8.9"

Customer Reviews

Well-written, honest, excellent

As the mother of a 34 year-old who has disabilities, I agree with other reviewers about the great need for personal books chronicling the transition from parenting "the cute little child" to the teenager and adult who may not be so cute, but still needs lots of assistance and problem-solving support from tired family and limited social programs. The author does a great job of illuminating that her year-after-year journey with Rachel was really a minute-by-minute process that involved the whole family. The book's honesty and lack of sentimentality are its greatest strengths, in my opinion. And I did find the end of the book so encouraging and uplifting. I appreciate the author's writing skills; every page moves the story along with creativity and care. Highly recommended. Mary Lee Moser, author, There and Back: A Journal Companion for Special Needs Parents

Hard for me to read due to the extreme honesty, and that is why it needs to be read.

I can't say I felt uplifted after reading this memoir, and that is not the point. It's a book that badly needed to be written, about what happens when children with special needs grow up, stop being adorable and need to have a life in the world. Anyone can love almost any small child, regardless of how severe their needs are, but when that small child becomes a teenager, or a young adult, or middle aged, suddenly a lot of that love dries up. It's family who is left with the child's best interests at heart, and this book tells of how hard it was for a family to find the right place for Rachel---who talks non-stop about nothing that is actually going on, who has partial vision, who needs medication, who is unable to fix a meal or take an effective shower or dress properly. I of course thought often during my reading about my own daughter. She is 5 and is autistic. She is of course at this point beautiful, much loved by those who work with her, but already, she can wear us out. Sometimes I dread seeing her get bigger and older, get to the age where people are going to expect her to answer questions, to not cry for hours, to be able to take care of herself. I have the hope every parent has, that these things will come with time, but there is a part of me that does know that's unlikely. However harsh the word sounds, she is retarded, and she will probably stay that way. And the world is not a kind place for children like her when they are no longer children. I am encouraged by the ending of the book, the perfect setting found for Rachel, that is of course not perfect, but I can see how it would feel like it was. I hope the rise in autism will make it necessary for the government to address what exactly will happen to autistic adults when the time for miracles in their life has passed, and they just need to be able to live a decent life. I thank the author for her book.

An Important Book

I so admire this book and author. There hasn't been enough written about the transition to adulthood for people with cognitive disabilities. Here we get an honest, incredibly well-told story of a complex, ever-shifting mother-daughter relationship. The book has room for ambivalence, contradiction, determination, despair--all of the things that make life, well, life. If, as the parent of a child with a disability, you find yourself stretching to the point of elasticity, giving even beyond the fact of total depletion, and then, the very next moment, wanting more for yourself, not to mention more FROM your child, this book is for you. It's lyrical candor will disarm you exactly as it provides the only solace that is credible.

Astonishing

I've long been a fan of Bernstein's work, from her novels to her scorchingly brave memoir about her sister's murder, Bereft. Rachel in the World shows the same kind of bravery. This is no treacly feel-good tome about what it is like to raise a special needs daughter and send her out in the world. Instead, Bernstein shows both her love and her irritation, and her anger at a system that doesn't exactly make it easy to do what is best for Rachel. Beautifully written and filled with photos that are like prose poems.

remarkable portrayal

Once again Jane Bernstein has achieved a remarkable portrayal, adeptly balancing her intensely personal feelings with an objective view of Rachel, her mentally retarded daughter (a description Bernstein sometimes finds more appropriate than the more politically correct euphemism of "intellectually impaired"). The Rachel we met as a little girl in Loving Rachel, Bernstein's moving account of discovering her daughter's mental and physical liabilities, has grown into a young adult, craving freedom and independence in the "real world" beyond the safe haven her mother has spent years developing. Bernstein's experience of wading through the labyrinth of "the system" in order to achieve her goal of finding the right living situation for Rachel proves to be confounding and frustrating, and as social services cuts become more frequent, even scary. Add to that Rachel's own conflicted emotions, along with her constant chattering and insatiable demands, and it seems inevitable that Bernstein will succumb to the overwhelming pressures of her role as Rachel's protector and provider, while at the same time trying to maintain her own sanity. But in her own inimical fashion, and written with the honesty that she is famous for, Bernstein proves that she is up to the task, even if at times she doubts her own strength and fortitude. On the surface a story about a young woman facing a life she may not be ready for, Rachel in the World is really about the love of a mother for her daughter. And I can't wait for Rachel to grow older so Bernstein can write the next chapter in their lives.