Between myself and them: stories of disability and difference. Book review

How many of the barriers between people are imaginary? And how many of them are real? These are questions posed on the back cover of editor Carol Krause’s anthology, Between myself and them: stories of disability and difference. This question pulls the reader into the inner sanctums of the book and the personal narratives within the anthology. This causes the reader to reflect on the real or imagined obstacles to relationships and community that exist in their own life.

Krause explains in the introduction to her 222-page anthology that the space between the subject of the author’s narratives and the authors themselves can be ‘found in the way young adults share their identities, their adventures in learning, the experiences of segregation and belonging …’ (p. 4). The frank and textured stories shared by the young adult author’s in this book showcase the varied experiences and varied ways in which individuals understand and identify with the social construction of disability.

The book is divided into four sections: identity, work and school, community and living. Each section boasts a selection of stories that reflect on the four sections main themes, encompassing, but not limited to, issues on body image, sexuality, school and work transitions, sibling relationships, belonging and adversity. These individual stories are dynamic, engaging and insightful. They cover a wide range of topics, which at times can be challenging for the reader. For each essay or personal narrative included in this anthology shares an intimate glimpse of the world of the storyteller.

These perspectives are not broadly shared within mainstream media and serve to challenge the reader’s understanding of disability and difference.

In the first section the first contribution, Something like a vampire by Sara Scharf, explores the murky waters of ‘invisible disabilities’ and disabling conditions. Deconstructing the oft repeated ‘you look fine, what’s wrong with you?’ refrain from strangers and loved ones alike. This expresses how it would be simpler and more readily understood by the average person if she [the author] told people she was a vampire than to fully explain the disabling Chron’s disease and the accompanying disabilities that she lives with. This first essay is a wonderful exploration of invisible disabilities and disabling conditions, conditions that can be severely debilitating, impacting on all areas of one’s life, and yet are still largely unrecognized within society.

The second section, looking at school and work experiences, captures the transitions involved in moving from high school to college or university and then to work.

The essays in this section delve into the changes that occur in oneself and one’s identity when reconciling past, possibly insecure selves and negative experiences with one’s awakening present and future self. The narratives in this section explore ideas around self-confidence, self-worth and self-determination, while sharing the experiences of stepping out into a great big world of opportunity.

An example of a narrative from the third section that is both inspiring and heartbreaking is the contribution Living with Jade, a dialogue with Tina and Dave Reale.

This narrative, facilitated by the editor Krause, is a caregiver’s perspective on their daughter Jade. Jade is a relatively non-verbal 21-year-old woman who is actively involved with her family and community. In order to have her story included in the narrative her parents, Tina and Dave Reale, participated in a dialogue with the editor. The dialogue is a fascinating and loving account of life with Jade. Jade’s development and life as a young woman are discussed, as well as the different accommodations and family and system navigations that have had to occur in order to provide Jade with such healthy experiences. However, while it is wonderful to read and learn about Jade and her family’s struggle to create opportunities for independence for her, one cannot help but notice that Tina and Dave have lost their own independence and sense of identity through caring for their daughter, an uncomfortable fact of life for many involved in any caregiving role and one that is rarely acknowledged.

The fourth and final section, living, covers an interesting selection of topics and themes. The first theme, Health, illness and being includes a personal narrative that is again presented in dialogue form, of a brother and sister discussing the ideas in their contribution, Would you cure your disability? In this dialogue between Julia and Mathew Munk the role that disability plays in shaping the life of an individual is explored in a reflective manner. The idea that one might have a desire to cure their disability is juxtaposed with another’s belief that their disability has shaped them into who they are today. Ideas of self-identity are again explored, along with the notion that one’s experience of living with a disability can be isolating for one and life-affirming for another. In the second theme in the final section, suffering and joy, the personal narratives delve into ideas regarding happiness, pain and the abyss of despair, acknowledging the different understandings and identifications that one can have about a disability or disabling condition. These last few narratives, while examining emotions that are dark, also illustrate that hope takes many forms. These personal narratives toy with ideas regarding the intrinsic nature of one’s sense of self and how it is affected by the experience of living with a disability or disabling condition, ultimately recognizing that happiness and fulfillment are on one’s own terms.

Overall, Carol Krause’s anthology Between myself and them: stories of disability and difference is an interesting and thought-provoking read. The personal narratives are frank personal accounts and interpersonal dialogues that explore discourses of isolation, belonging, identity, difference and hope. The stories and dialogues are presented in a manner that is both unusual and welcome. The combination of first person narratives and facilitated dialogue allows the reader to fully engage in each contribution, stimulating conversations and questions regarding the issues raised.

This book will be a great addition to one’s personal or academic library.