Beyond Models:  Some Tentative Daoist Contributions to Disability Studies

Stoltzfus, Michael J.; Schumm, Darla

doi:10.18061/dsq.v30i3/4.1284

Cited by 2 publications

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“…A restitution narrative accepts that in having Parkinson's, there is something wrong or lacking: that “a person is not whole, not really able, unless one is ‘cured’” (Stoltzfus and Schumm 2011) and that advances in medical research can fix this lack. Sociologist Arthur Frank (2013) argues that the restitution narrative is seductive in its clean modernist certainty that illness will be converted to wellness, and it is only natural to wish this when taken ill, or after being diagnosed with a neurodegenerative condition.…”

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Feeling Lovely: An Examination of the Value of Beauty for People Dancing with Parkinson's

Houston¹

2015

Dance Res. J.

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Against the backdrop of a four-year study into dance for people with Parkinson's, I examine one woman's claim that dancing makes her feel beautiful, and, as such, is fundamental to her well-being. I debate the challenge that this claim poses to those who argue that beauty in dance is at best unimportant, at worst disenfranchising. In debating this challenge, I create a link between aesthetics and health through a reformulation of the value of beauty in the context of chronic illness and well-being. This link then allows me to discuss how feeling lovely could become relevant and meaningful within the context of participating in dance.

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confidence: 99%

Feeling Lovely: An Examination of the Value of Beauty for People Dancing with Parkinson's

Houston¹

2015

Dance Res. J.

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“…Cultural patterns of patients' deference to their medical professionals, and the corresponding pressure on those professionals to 'have an answer' are deeply rooted, dominated by the 'restitution narrative' in which "a person is not whole, not really able, unless one is 'cured'" [5,6]. Unless each person in the equation changes, then the culture cannot change.…”

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Adventures with Parkinson's: Empowering Parkinson's Patients to Become Active Partners in Research and Treatment

2017

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The relationship between people with Parkinson's and regenerative medicine is often ambiguous. As people with Parkinson's, we raise funds for research, we raise awareness of the condition and of the work to understand and hence slow, stop or cure it; but we are no longer seduced by the prospect of an imminent miracle cure. A recent paper by Barker et al. [1] concludes that "as the ability to make authentic mid-brain dopaminergic neurons from stem cell sources improves, so does the reality of a first-in-human clinical trial in patients with PD. [But] only too often are exaggerated claims made, based on limited pre-clinical data and the desire to pass the financial and regulatory hurdles needed to get to clinic". As patients, we cannot live without the hope of a life well and positively lived. This paper explores how we approach this, and the role that we play in supporting regenerative medical research. We also extend an invitation to the regenerative medicine research community to continue and deepen this conversation.In his 2011 Maastrich TEDx [2] talk "From God to Guide", and his 2016 Edinburgh Parkinson's Lecture, "The Future of Parkinson Care" [3], Professor Baastian Bloem sets out the principles of participatory medicine, in which Parkinson's patients, researchers and healthcare professionals work together. In this article, we outline how the Edinburgh Parkinson's community: people with Parkinson's, including us as authors, our families and friends, have for some time now been becoming "part of the participatory process". We set out the what, how and why of moving individually and as a community, from being passive recipients of our healthcare, to being instead active collaborators involved in partnership with clinicians and researchers. In the words of the Dalai Lama [4], we are recognizing that our long-term individual interest lies in the welfare of everyone in the Parkinson's community and beyond into the wider society. Throughout this article, we use the convention People with Parkinson's (PwP) to mean people or person with Parkinson's -for example both the singular and the plural according to meaning in situ.Education is at the heart of everything the Edinburgh Parkinson's community is doing. We are educating ourselves as lay people in all aspects of Parkinson's and cutting-edge research into the condition. We are educating our health professionals, researchers and students about the lived experience of Parkinson's (this last with interesting and far-reaching research consequences for regenerative medicine, explored below). We are learning how to develop a quality of living that goes far beyond whatever our physical symptoms -or those of our care partners -might be at any given time, and sharing that knowledge and insight too with our health professionals.The article introduces a wide range of activities provided by the Edinburgh Branch (nested within the wider context of Parkinson's UK) and examines how each activity contributes to and enhances the others, bringing very real benefits to everyone inv...

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Beyond Models: Some Tentative Daoist Contributions to Disability Studies

Cited by 2 publications

References 0 publications

Feeling Lovely: An Examination of the Value of Beauty for People Dancing with Parkinson's

Feeling Lovely: An Examination of the Value of Beauty for People Dancing with Parkinson's

Adventures with Parkinson's: Empowering Parkinson's Patients to Become Active Partners in Research and Treatment

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