Rupturing Concepts of Disability and Inclusion

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THE QUILTER’S JOURNAL stated how I would be very happy to sit with her while she had the injection that he was now going to go and prepare! A couple of days later after a liver biopsy resulting with the diagnosis of liver cancer, Trudy was moved to a palliative care ward where she was nursed in an individual room. Open access was available to family and friends. During the next 10 days that she lived, Bob and I were privileged to sit with her and share that time with her mother, and a couple who had cared for her, as a member of their own family, during the previous few years. We exchanged stories; we laughed together and we cried together. We all made room for each other’s need for private space; and we facilitated the opportunities for friends such as Angela to come and say good-bye. And we celebrated that even as she was dying, Trudy still managed to ambush some unsuspecting nurses and other professionals. We talked to Trudy about death, preparing her in a way that we hoped would be adequate. The previous few years that Trudy had spent with Julie and Graham had been as fun-filled, yet as ordinary, as that which anyone could have hoped for. For instance, Trudy went with them for a weekly counter-tea at the local hotel where Graham played pool. She was there as one of the crowd, accepted and always interacting with fun and friendship to the authentic friend. She had regular telephone conversations with her mother who still lived in a rural area; and she dearly missed her father who had died. This, then, seemed to be what deinstitutionalisation, integration, inclusion, and all the other technical terms were about. This was about goodness and about life, that no piece of legislation or policy or program could adequately script. It was something that could only be experienced through intimate, yet intentional, relationships; and people willing to engage in them in a profound sense of mutuality. And these were people who were willing to confront evil, to stand up for what they believed was right, and to challenge what they perceived to be unjust. These, then, are issues of morality which have remained unspoken in conversations of deafening silence. This is a story which begins and ends with death. It is also a story which articulates community exclusion; its plot centering around the defiance and rejection of processes of social death imposed, and continually played out, by different communities towards some members of the human race. It is, and will continue to be, therefore, a counter-story which strives for living. It is out of these diverse notions of death, that a theory about inclusion – what it takes for inclusive living – is born. For it was you who formed my inward parts; you knit me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; that I know very well. My frame was not hidden from you, xxvii
PROLOGUE when I was being made in secret, intricately woven in the depths of the earth. Your eyes beheld my unformed substance. In your book were written all the days that were formed for me, when none of them as yet existed. How weighty to me are your thoughts, O God! How vast is the sum of them! I try to count them - they are more than the sand; I come to the end - I am still with you. Psalm 139: 13-18. 3 This chapter has previously been published. Edited by Rolph, S., Atkinson, D., Nind, M., Welshman, J., Brigham, L., Chaptman, R., et al. (2005). The quilter’s journal. Witnesses to change: Families, learning difficulties, and history (pp. 263– 276). xxviii
Page 2 and 3: A Transformatory Ethic of Inclusion
Page 4 and 5: A Transformatory Ethic of Inclusion
Page 6: DEDICATIONS This book is dedicated
Page 9 and 10: TABLE OF CONTENTS viii 3.3.1 A Soci
Page 11 and 12: TABLE OF CONTENTS x 6.4.1 A Context
Page 14 and 15: FOREWORD Over the past decade socia
Page 16 and 17: ACKNOWLEDGEMENTS I came to this tas
Page 18 and 19: She cries. Her blue eyes squint. He
Page 20 and 21: THE QUILTER’S JOURNAL The hospita
Page 22 and 23: THE QUILTER’S JOURNAL Relational
Page 24 and 25: THE QUILTER’S JOURNAL offspring o
Page 26 and 27: THE QUILTER’S JOURNAL the bed in
Page 30 and 31: PART ONE: OPENING THE ‘SCRAPBAG
Page 32 and 33: INTRODUCTION Considering ‘inclusi
Page 34 and 35: INTRODUCTION It is no longer enough
Page 36 and 37: INTRODUCTION habitat. Dwelling is b
Page 38 and 39: INTRODUCTION their site of origin o
Page 40 and 41: INTRODUCTION - To consider and conc
Page 42 and 43: CHAPTER 2 CONCEIVING A QUILT: CREAT
Page 44 and 45: CONCEIVING A QUILT: CREATING A METH
Page 64 and 65: 2.5.4 Constructing A ‘Research Qu
Page 66 and 67: PART TWO: CONFIGURING THE WEAVE OF

Rupturing Concepts of Disability and Inclusion

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