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On Being Other-Wise

Yesterday a national organisation promoting well-being for people living with dementia in South Africa posted an article (reposted from another site) that said: “What it’s like to have dementia: losing friends, talking in circles and a slow descent into darkness. What would you do if you knew you were losing all sense of self?” I find it very difficult to contain my anger and frustration with the way that even organizations that are supposed to educate the masses perpetuate this line of thinking (or rather NOT thinking), fuelling the fire of hell and damnation, loss of Self, identity, personhood, agency and citizenship for people who are living with cognitive impairment. What is even more frustrating, is that so many people simply could not be bothered to read anything that would educate them to the contrary. WHY do we so readily accept these ideas as fact? WHY do we choose not to even give it a second thought that there is more to dementia than meets the eye? Is it so dif cult to see that WE are the ones imposing the suffering on people living with dementia, and not the syndrome? What more do we need to do to bring about some greater empathy, a deeper understanding, and a more intense engagement that will make us learn from the people who are the true experts, being the very people living with dementia?

It is not that there is not enough research to the contrary! Pia Kontos alone has published some brilliant work on the topic.

Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease PIA C. KONTOS (a1) DOI: online by

Cambridge University Press: 18 November 2004 Abstract

“Explicit in the current construction of Alzheimer’s disease is the assumption that memory impairment caused by cognitive deficiencies leads to a steady loss of selfhood. The insistence that selfhood is the exclusive privilege of the sphere of cognition has its origins in the modern Western philosophical tradition that separates mind from body, and positions the former as superior to the latter. This dichotomy suggests a fundamental passivity of the body since it is primarily cognition that is held to be essential to selfhood. In contrast to the assumed erasure of selfhood in Alzheimer’s disease, and challenging the philosophical underpinnings of this assumption, this paper presents the findings of an ethnographic study of selfhood in Alzheimer’s disease in a Canadian long-term care facility. It argues and demonstrates that selfhood persists even with severe dementia because it is an embodied dimension of human existence. Using a framework of embodiment that integrates the perspectives of Merleau-Ponty and Bourdieu, it is argued that selfhood is characterised by an observable coherence and capacity for improvisation, and sustained at a pre-reflective level by the primordial and socio-cultural significance of the body. The participants in this study interacted meaningfully with the world through their embodied way of ‘being-in-the-world’.”

Dementia Discourse: From Imposed Suffering to Knowing Other-Wise Gail Joyce Mitchell York University Sherry L Dupuis University of Waterloo Pia Kontos

Research Scientist Dalla Lana School of Public Health University of Toronto DOI: Keywords: Dementia Discourse, Suffering, Embodied

Selfhood, Knowing Other-Wise, Hermeneutics,


“The authors revisit the troubling discourse surrounding the diagnosis of dementia. A critique of the predominant words and images in health care literature, public discourse, and policy is considered from multiple angles. The authors link the dominant words and images with a form of inter-relational violence. Contrary images grounded in research and experience offer a different view of what it is like to live with a diagnosis of dementia – a view that is life-affirming and based on relationality and possibility. Concepts of embodied selfhood and knowing other-wise are portrayed as doorways to transforming a discourse of violence toward a discourse of compassion and ethical relating.”

We have fallen into more than a “troubling discourse” in my opinion. Our discourse has indeed become one of violence, and our view is that of de-meaning people who are according to the article cited above “knowing other-wise”. Our concrete, linear, at-earth type of arguments about the Mind is growing to catastrophic heights. It is time to stop, to think, to feel, to explore our Connectedness on different levels. This apocalyptic demography of suffering is our own doing, our own creation. What is the basis of our discomfort around dementia? Maybe fear? Or maybe as Athul Gawande points out it is based on the fact that IF we indeed consider the Self (Soul) of someone living with dementia, we would have to seriously reconsider the way we treat them…we would not ship them off to the “frail care”, we would not stop visiting them, we would not lie to them, chemically restrain them, shut them out from the world. We would have to honour their knowing other-wise…

The images and words associated with dementia that are currently mainstream create more fear, sometimes almost verging on hate speech! How could we even think of saying that someone is no longer their own Self? Who are they then? “Just” an empty shell? It would seem that this “form of inter-relational violence” is totally acceptable to most people. How do we stop it? I don’t know. What I do know is that when I get over feeling angry and frustrated, I am filled with immense sadness… (Being in Vienna, seeing the show Cabaret, seeing the right-wing political posters, I cannot help but be reminded of Naziism and the way that people spoke about Jewish people. It became the mainstream rhetoric, demeaning, joking, degrading, dehumanising. Popular propaganda at the time swept millions of people up creating one of the biggest tragedies in our human history.) Millions of people are living with memory loss globally, let us not make ourselves guilty of another genocide, this time one of the Soul.

Let’s think about how we degrade, dehumanise, and de-mean people living with dementia. Let’s start to be mindful of our thoughts about “them”, and the way that we speak about “them”. The way that we accept the treatment of “them”… It is time to rise up, speak out, and create a new language around people who know other-wise. It is the right thing to do.

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