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Self-Determination Has Emerged As a Major Focus of Interest in the Field Of Review of Disability Studies: An International Journal Volume 9, Issue 2 & 3 Copyright 2013 Table of Contents Whatever Happened to Mary Ingalls? Megan A. Conway, Ph.D., RDS Managing Editor Forum: Global Families Guest Editors: Janet Sauer, University of Colorado, USA Philip M. Ferguson, Chapman University, USA Introduction Writing the Global Family: International Perspectives on Disability Studies and Family Narratives Janet Sauer, University of Colorado, USA Philip M. Ferguson, Chapman University, USA Forum Articles Memories and Re-memories of My Mom’s Eye Bandage: Trans-relation Among the Norms Sujung Um, Teachers College, USA Jong Lye Won, Korea National College of Rehabilitation and Welfare, Korea Growing Up: Disability and Cultural Dynamics in an Egyptian/American Family Christine-Marie Youssef, University of Chicago, USA The ‘Othered’ Sister: Family Secrets, Relationships, and Society Melissa M. Jones, Ph.D., Northern Kentucky University, USA What’s Behind the Curtain? A Family’s Search for an Inclusive Oz Janet Story Sauer, University of Colorado, USA A Family Narration of Disability Experience in Iran Negin H. Goodrich, USA Disablism and Diaspora: British Pakistani Families and Disabled Children Dan Goodley, PhD, University of Sheffield, England Katherine Runswick-Cole, Manchester Metropolitan University, England Uzma Mahmoud, Manchester Metropolitan University, England Algorithms of Access: Immigrant Mothers Negotiating Educational Resources and Services for Their Children With Disabilties Gay Wilgus, City College, CUNY, USA Jan W. Valle, City College, CUNY, USA Linda Ware, State University of New York, USA Wheelchair Basketball Teams as “Second Families” in Highland Ecuador Nicholas A. Rattray, Indiana University/Purdue University, USA Book and Media Reviews The Problem Body, Projecting Disability on Film by Sally Chivers and Nicole Markotic Reviewed by Raphael Raphael, Ph.D. The Silvering Screen: Old Age and Disability in Cinema by Sally Chivers Reviewed by Amanda T. McLaughlin Perfect Chaos: A Daughter’s Journey to Survive Bipolar, a Mother’s Struggle to Save Her by Linea Johnson and Cinda Johnson Reviewed by Charmaine Crockett Lovers Lame by Robert Rudney Reviewed by Steven E. Brown, Ph.D. Disability Studies Dissertation Abstracts Jonathon Erlen, University of Pittsburgh, Pennsylvania, USA RDS Information RDS Subscription Form Editorial: Whatever Happened to Mary Ingalls? Megan A. Conway, Ph.D. RDS Managing Editor Since this issue features a forum on the family, I figured I could easily write an editorial focused on my own family experiences. But then I realized that many of my editorials focus on my family. After all, my family is the most important thing in my life. Who wants to read another editorial about the exploits of my eight-year-old? So instead I am going to focus on another family, then admittedly a family who comes to us because of my daughter’s recent interest in the Little House on the Prairie books and TV series, but another family all the same. They are the Ingalls family, and most importantly, Mary Ingalls, the blind sister of the book and American TV show’s main protagonist, Laura Ingalls. For those of you unfamiliar with the American classic saga of the Ingalls family, their journey by covered wagon in the 1870’s from the state of Wisconsin, through Kansas, Minnesota and finally into South Dakota, is told rather charmingly in the children’s series, The Little House Books, by Laura Ingalls Wilder, who wrote the fictionalized story of her family’s true journey when she was an older adult in the 1940’s and 50’s. I devoured these books as a child, and even lived their stories of pioneer hardship, family love and adventure in play with my friends. In the 1970’s Michael Landon directed and starred in the American TV series, Little House on the Prairie, which was a big hit for family television and ran for nine seasons. The TV series diverges from the books in countless ways, but the primary themes of family and hardship remain, with the appearance of family characters from the books including Laura, her “Pa” and “Ma”, and her three sisters; Mary, Carrie and Grace. In both real-life, the book and the TV series, Mary becomes blind as a teenager, due to a then-unidentified illness that for many years was thought to be Scarlet Fever but which more recently is thought to have been Meningitis. In the book, and presumably in real life, blindness is for Mary the end of all expectations that she will realize her hopes of becoming a teacher or having a family. Laura’s descriptions of Mary in the Little House books are of someone who suffers her blindness without complaint, who at first spends days upon end in a rocking chair in the corner, but who gradually learns to contribute to household chores and childcare. XXXX Indeed, as told in the Little House books, according to the website XXX although Mary does have the opportunity to attend a school for the blind in Ohio where she is educated and learns vocational and housekeeping skills, she lives with her parents or sisters for her entire life and never has a family of her own. Her primary vocations include involvement in church life with her mother, and making fly masks for horses to help make ends meet after her father dies. As a child, I never noticed the sad plight of Mary, other than to sympathize with her blindness in a general way, without ever connecting it to my own blindness or noticing any difference between her sheltered life and my life of “mainstream” schools, wandering the neighborhoods of San Francisco with friends, and dreaming of a career as a movie star (or lawyer if that didn’t work out). As an adult, Mary’s situation seems to me to be dreary and representative of the constraints that disability has placed on people of the past, and unfortunately, on people of the present as well. Why could not Mary have had a family of her own, pursued a career as a teacher, even if “only” as a teacher of others who were blind? Apparently the creators of the Little House on the Prairie TV series thought the same. In the concluding episode of Season Three, Mary is slowly going blind. I am not sure about in real- life, but in the books Mary’s blindness came on much more quickly. Apparently there is more drama to be squeezed out of the gradual, torturous loss of sight, with plenty of time for denial and, of course, tears (we counted no less than seven bouts of tears in the one-hour episode, from each of Mary, Pa, Ma, Laura, friends and neighbors). Forum: Global Families Introduction: Writing the Global Family, International Perspectives on Disability Studies and Family Narratives Janet Sauer University of Colorado, Colorado Springs & Philip M. Ferguson Chapman University We live in the Golden Age of the memoir. Everyone has a story to tell, and a growing number are finding their way to publication. The disability memoir has certainly been a part of this growth. It is refreshing to note how many of these recent narrative accounts of living with a disability have been written from what might be broadly termed a “disability studies perspective” taking on a more critical, socio-cultural orientation than the traditional ‘inspiration in the face of personal tragedy’ motif. The list of such accounts is growing (a very short and incomplete list would include works by Anne Finger (2006), Simi Linton (2006), Harriet McBryde Johnson (2005), Eli Clare (1999), Rod Michalko (1998), and Stephen Kuusisto (1998). Beyond the personal memoir, there has been a similar explosion of memoirs written by family members of individuals with disabilities (parents, siblings, and children). However, unlike the personal memoir, relatively few of these “family narratives” have adopted a clear disability studies perspective. There are, of course, important exceptions: Lennard Davis’ (1999; 2000) personal and socio-cultural examination of normalcy as a child of deaf parents; Michael Berubé’s (1996) powerful account of discovering the history of a label as he engaged with the reality of his son’s Down syndrome; or Ralph Savarese’s (2007) distinct but equally powerful accounts of fatherhood, adoption, and the meaning of neurodiversity. We also aspire to live in a Global Age for disability studies. Of course, there is no area of academic study that should not be in such a “global age.” We are long past the time where assumptions, hidden or explicit, that “West is Best” and “White is Right” can go unchallenged. Still it is important to recognize that it is families everywhere, from the Global South as well as the North, whose voices about the experience of disability must be heard in greater number. If disability is unavoidably cultural, then our search for family voices must also reflect the international – and intra-national – diversity that contributes to that cultural context. As Goodley puts it, the literature emerging from “global disability studies” must be “pan-national” in perspective as much as “cross-disciplinary” (Goodley, 2011, p. 1). Yet, here as well, the burgeoning literature of personal and family narratives has remained predominantly white and western in origin and perspective. Even the selections that follow might be said to show a somewhat “westernized” overall tone. A truly global disability studies remains as much aspiration as reality. It is this personal and socio-cultural negotiation with the (re)interpretations of disability from various family perspectives that we focus on in this special issue of the Review of Disability Studies(RDS). In our call for proposals for this special issue, we sought a global perspective representing a variety of cultures and traditions. The response was overwhelming, making the selection difficult, but we hope representative of ways in which gender, race, class, disability and culture intersect with family systems.
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