Mutuality in Relationships with Health Care Providers

Abstract

I have had a mobility impairment for many years and have experienced repeated trauma at the hands of medical personnel. They have withheld anesthesia and postoperative pain medication, insisting that I had no pain. Physicians have also refused to believe that I have been physically active, and have minimized the degree of impairment that I described. They hold the same biases about people with disabilities as do most people: that we are lazy and weak, and that we do not try hard enough. Despite my ongoing attempts at self advocacy, my orthopedist has made unilateral decisions about my treatment goals and the management of my diseased joints. These have caused me to wear out other joints, until I am significantly impaired and can work only a few hours a week. He then began to treat me differently, since his preconceptions prevented him from seeing me as an individual with unique abilities facing attitudinal and physical barriers. Our relationship was the only tool available to me to attempt to break down his prejudices to stop the harm he was causing me. I will describe a series of oppressive medical provider relationships. I will then demonstrate my attempts to assert myself as an essential mutual partner in decisions about my goals, and show the limitations of this approach in the presence of a great power differential.     

The Passagenwerk and the place of Walter Benjamin in cultural studies: Benjamin,cultural studies,Marxist theories of art

This essay is a reflection on the circumstances that led me to a particular research project, on Cajun dance and music spaces, and also on the project's mutations through subsequent phases of development. Above all, this essay attempts to take stock of the difficulties – personal, scholarly, and theoretical – as well as the personal choices that have gone into developing an ongoing scholarly project. While I indicate the importance of the experiences of personal pleasure that originally inspired my research, I also show how the personal and the pleasurable often necessarily encounter tensions and even certain kinds of conflict when linked to a ‘disciplinary’ domain. This essay therefore traces a particular example of how ‘cultural studies travels’ both geographically within a life and disciplinarily within something that has come to be known as‘French cultural studies’.     

The Need for Military Intervention in Humanitarian Emergencies

I have been a keen student of international intervention since long before my command of the United Nations forces in Cambodia. My military career has spanned much of the Cold War years and has taken me to places like Malaysia during the period of confrontation over its formation, Vietnam, Europe at the height of the strategy of Mutually Assured Destruction, and most of Southeast Asia. I was an instructor at the British Army Staff College at the time of the establishment of UNIFIL – the United Nations Interim Force in Lebanon – a serious aberration in the determinedly passive international peacekeeping approach to that time. The earlier intervention in the Congo in the 1960s seemed to have warned the UN off anything forceful in disrupted states, leaving it to former colonial powers to extract themselves from their former areas of engagement with as much saving grace as they could muster. Many of them did not do this very well.     

Little Theories and Big Problems: Chicago Sociology and Ethnic Conflicts*

Since this society is oriented toward a specific theory, I thought I ought to say something about theories in general and our little theory in particular. Let me get that off of my chest. I am not overly fond of terms like “theory” and “theorist,” both of which seem to suggest the importance of the person who claims the identity more than anything else. They are pompous terms. To the extent that we are thoughtful about what we are doing and how we are going about it, all sociologists are theorists and methodologists. But if that is all we are, then we are literally people of no substance. We have no substantial knowledge of or concern for the empirical world. The little theory we share is extraordinarily empirical. It is, as one of its most prominent practitioners called it, a “grounded theory” ( Glaser and Strauss 1967 ). I confess that several years after receiving my degree I had no real sense of what symbolic interaction was and how it might differ from other theoretical orientations. Arnold Rose enlightened me on this when he asked me to submit a paper for a new collection he was editing ( Rose 1962 ). I was pleased and flattered. Rose was a mentor of mine, and I had never before been asked to contribute to an edited volume. But I was unsure of what would be appropriate for a book about symbolic interaction. I screwed up my courage and asked Arnold: “Exactly what is symbolic interaction”” He shrugged off my ignorance, turned on his heels, and muttered over his shoulder, “It is what they do at Chicago.”     

Sexual Abuse,Spiritual Formation,and Psychoanalysis

Sexual abuse, from being an event in fearful silence, is now seen as a civil wrong or crime. Participants are stereotyped as perpetrators, victims, and enablers. These are the simplifications of an adversarial legal and insurance system. I suggest a more complex view. I was abused as a boy by the senior acolyte who was training me. The abuse taught me to lie and lose trust in adults and myself. For survival, I learned to invent provisional selves without understanding that these would become profound confusions of identity, sexuality, and purpose, lifelong sources of anxiety and depression. Through a recovery of my abandoned spiritual life and an intense psychoanalysis that together amounted to a metanoia, “a change of heart,” I was able to move past mere forgiveness to a reconciliation with myself and my history, and with my elderly father, who I saw as having failed to protect me years before.     

Towards the elsewhere: discourses on migration and mobility practices between Morocco and Italy

The objective of this article is to analyse the preparation process of young Moroccan migrants intended to migrate to Italy. My focus is on the personal and collective formulation of their desire to leave and on concomitant action taken to bring about these aspirations; highlighting the complexity of the imagination, which migration – and expected return – entails. A second point of interest is the agency exerted by such youth, as they prepare for departure; even when they have not yet physically left the country. In addition, my observation is focussed on networks emerging as a result of having to deal with state-imposed, migration restrictions, as well as with the politics of humanitarian agencies and NGOs. I argue that these aspiring migrants project themselves into the future and act in accordance with what they long to become. They shape themselves as mobile subjects through a process of self-making to overcome the above-mentioned constraints.     

Home Is Where She Is

ABSTRACT

I have written this paper with the intention of reading it out loud to you. As I was writing this paper, I imagined your skin, that soft outer membrane of your body. I imagined my tongue moving to shape my words, all the while carefully shifting my teeth out of the way. I imagined having these words thump under your skin and tremble your presence to the beat of our hearts. Because this paper was supposed to have you feel me and my people. And by “my people,” I truly mean everyone around me, including you. So, this paper is essentially about us, you and me. You know, I just had a feeling that you might know us, but you do not feel us. I just had a feeling that you have got to feel how we are. … Do you hear me? Because, only then, can we finally, start.     

Paying Forward and Paying Back

Twenty years after the conclusion of a fieldwork study, a member of the family that once served as my informant came to live with me. This reflexive account of Ari's stay in our home juxtaposes his socialist kibbutz life with that of my own hypercommodified individualistic urban life. His experiences of working in the illegal economy raise questions about my own hiring practices. In short, we confront ourselves through our respondents' cultural vision. Ultimately, in revisiting a study I had thought complete, this account raises the question of what we owe those people who help us to gain knowledge about their culture, the currency of our careers.     

王克荣：一名“白衣天使”的选择

王克荣，1963年出生，北京地坛医院红丝带之家护士长，全国先进工作者，第五届“贝利·马丁奖”获得者，第44届南丁格尔奖章获得者，被誉为“艾滋病患者的知心大姐”，至今从事艾滋病患者救助工作已有17年。     

Trailing my journey into disability insights

The following short article traces my journey towards a better understanding of disability in my personal and professional life. I argue that context, professional cultures and changing theories of disability have all intersected in my journey to this fuller understanding. In turn this provides me with a better theoretical and professional tool kit with which to grasp disability and the lives of Maltese disabled people.     

Reinterpreting learning difficulty: a professional and personal challenge?

I want to explore in this article the ways in which people with a learning difficulty are constructed in a number of ways as disabled, as limited, as being special, and so on. Constructions can also be utilised for different purposes – to ensure that they have effective levels of support and to elevate the status of people with a learning difficulty. Positive constructs may articulate an ‘accentuation of the positive’ as Goodley and Armstrong prescribed. However, whilst I agree with this sentiment, one echoed in Swain and French’s important formulation of an affirmative model of disability, and one that I have also espoused, professionally I also feel that my experience of working with people with learning difficulties makes me suspicious of generalised statements about people, even those deemed positive. This may be especially true in a period of financial rationalisation, where such constructs may seem inevitable in the fight for effective support for people with a learning difficulty.     

Locked down? Speaking from the shadows and silence for survival

I write to speak of silencing and the suffering of survivors of domestic abuse in the family courts of England and Wales and the struggle to find a voice to articulate the hardship faced in this lockdown through court. It has taken the whole period of lockdown to find the words, the courage to keep writing, even as tears stream down my face, even as I sit in a virtual court hearing, even as my voice breaks as I fight to be heard. This text is a glimpse into a world that is hidden in plain view, where I will share fragments of my lived experience. I am scared to write but know I speak or am lost in the silent void that I have known for too long. Domestic abuse and the taboo around it screams at me to remain unseen, hidden, and invisible. I keep returning to find the words, as the very real cost of not naming the violence and reaching out to speak through it is too high. The fragmented account that follows is a raw telling of living life through the court system; it is written to share a voice that was unheard in the family law court and has been minimized, side-lined, ordered, and silenced through 3 years of the court journey and the embodied effects this has had. It moves between space and time to show a journey endured. Can you hear me? Will you bear witness?     

Beyond cognitive deficit: the everyday lived experience of dyslexic students at university

This study explores the lived experiences of three dyslexic university students as they negotiate a number of different learning spaces within their higher education institution. The students completed reflective diaries for a period of three weeks and were subsequently interviewed about the experiences they recorded. The transcribed data from the diaries and interviews were analysed using interpretative phenomenological analysis. The following four themes were constructed following analysis: getting things out of my head; holding back – performance as risk; ever-present inner voices – effort of constant self-monitoring; and not belonging in academic spaces – metaphors of misfit. This study argues that attention to the everyday experiences of students with the dyslexia label is as important as knowledge of cognitive differences in the drive to create a more equitable learning environment in higher education.     

Completing the Story: connecting relational and psychological processes of exclusion

This paper explores how my understanding of and approach to investigating youth transitions and social exclusion, shifted when conducting a case study about Ray, a mature student in transition from a further education college. Having relayed the findings of a study about Ray's experiences of social exclusion, I will discuss the events and reconsiderations that prompted a change in my relationship with Ray. I will reveal how I began to know Ray is his own right, and grasp his feelings and views about his life, and show how this caused Ray to become a participator in and not merely the subject of the study about his life. This (methodological) reconsideration prompted me to perceive my original relationship with Ray in exactly the same way as I had understood his relationships with his mother, his lecturers and with officials--a relationship between the barer of 'expertise' and the subject of this knowledge. The paper will conclude that the new, closer relationship Ray and I developed enhanced the validity and the richness of my understanding of his social exclusion.     

All Things Thrown and Wonderful,All Memories Great and Small

And the Lord God made them all. I went to Sunday school and like lots of other kids (though far from all) came to an age at which I simply stopped going. Nothing conscious about it, I don't think, it's just those sets of spaces stopped becoming; stopped like nothing physical can stop, like a car crashing into a wall and instead of rebounding being merely consumed in whole. I (re)member, in my naive teens (when is this? I do not know. Perhaps the time of the Iraq war, but maybe this was a different car journey) I once came out with the statement (which was not particularly naive especially) “I think God exists, how did we all get here otherwise”. Me, my sister that is two years older than me, my mum and dad, were on the road from Auchmuir Bridge towards Stirling around Loch Leven, the loch in Fife, Scotland, on which Mary Queen of Scots was held on an island. I have an image of a memory of going there as well. It is thus, however, that I (re)member the initiation into a different vision of the universe and everything. Yet it is a state clearly pleated bewilderingly. As an event it exists in what Deleuze and Guattari term a “rhizome, a burrow”, with “flights of escape” which have no beginnings or ends, mere initialities and finalities. 3 3 They talk of this in many places. See Deleuze, Gilles and Guattari, Felix , Anti‐Oedipus: Capitalism and Schizophrenia , ( London and New York : Continuum, 2004 ); Deleuze, Gilles and Guattari, Felix , Kafka: Toward a Minor Literature , Dana Polan trans., ( Minneapolis and London : University of Minnesota Press, 1986 ). For Deleuze alone also see Deleuze, Gilles , The Fold: Leibniz and the Baroque , Tom Conley trans. ( London : The Athlone Press, 1993 ).
This is strange. It is not a polemic, nor does it have an explicit argument, except perhaps to ask the question that always dances on a pinhead – as Bohumil Hrabal once put it, “Pirouettes on a Postage Stamp” 4 4 Hrabal, Bohumil , Pirouettes on a Postage Stamp .
– is there any escape? I think I sang “All Things Bright and Beautiful” at my Gran's funeral, but it might have been something else. We stopped in the house of the priest and watched England lose the Cricket World Cup in 1999; they played in blue. That's how I (re)member the year of my Gran's funeral. The church I used to go to burned down. Arson, I think.     

Mindful Ethics: Comments on Informant-Centered Practices in Sociological Research

In this article, I introduce the concept of “mindful ethics” to describe my experiences as a feminist qualitative researcher who has confronted ethical dilemmas in my sexuality research. Mindful ethics is informed theoretically by mindful inquiry, grounded theory, ethics in practice, and ethically important moments. Mindful ethics has been useful in dealing with ethical considerations throughout all stages of my sexuality research. Shifting my attention to the takenfor-granted social contexts and circumstances surrounding informants’ life experiences has helped me deal with ethical concerns that otherwise may have resulted in harm to informants.     

BARING LIFE AND LIFESTYLE IN THE NON-PLACE

In this paper I offer an intervention into two prevailing approaches to the non-place – those spaces of transit that include hotels, airports, theme parks, and refugee camps. The non-place is treated on the one hand as an apolitical space of hypermediated consumption and mobility while, on the other hand, it also figures as exemplary of the biopolitical regulation of life within a ‘contemporary camp’. I argue that the non-place must be read, not as spectacle or camp, but as housing a very specific politics of place wherein the logic of the camp and the spectacle collide. What is of interest to me is not so much the camp as the hidden space of modernity, but how it finds a willing alibi in the spectacular media saturated spaces of capital. Within the non-place, the forces of global corporate capital have found an amiable space to both invest (lifestyle) and reduce (bare life) human life to maximize and optimize its own power.     

Reflections on conducting research on the ‘war on terror’: religious identity,subjectivity and emotions

In recent years there has been an increase in literature which has explored the insider/outsider position through ethnic identities. However, there remains a neglect of religious identities, even though it could be argued that religious identities have become increasingly important through being prominent in international issues such as the ‘war on terror’ and the Middle East conflict. Through drawing on the concept of subjectivity, I reflect on research I conducted on the impact of the ‘war on terror’ on British Muslims. I explore the space between the insider/outsider position demonstrating how my various subjectivities – the ‘non-Islamic appearance I’, the ‘Muslim I’, the ‘personal I’, the ‘exploring I’, the ‘Kashmiri I’ or the ‘Pakistani I’, the ‘status I’ and the ‘outsider I’ – assisted in establishing trust, openness and commonality. I conclude by demonstrating how the ‘emotional I’ allowed me to manage my own emotions and participants emotions.     

Speaking out loud: Muslim women,Indian Delights and culinary practices in eThekwini/Durban

I asked, ‘Did your mother teach you to cook?’ Almost an hour later, time consumed by mutual reminiscences of Indian Delights, stories of the tastes and textures and colours of food and life in Durban, at last when I thought it would never be answered my question swam back up to the surface of our conversation: ‘You know, then I lived with my oldest sister, not my mother. Her mother-in-law taught me.’ Too heavy a shift of register, the answer dropped into the bubble of conversation we had made around ourselves, imposing another reluctant silence. I could not ask more, not then. Deliverance came through other stories. We talked about the subtly different combinations of spices that women even from the same family choose to use, and the embodied pleasures of walking into a kitchen steamed up with the smells of several dishes all cooking at once. And for the moment we avoided returning to a family narrative of separation, loss and melancholy.