What is 'epistemic injustice'? (and what does it have to do with dementia)

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I have some very exciting news. Last week, the first paper related to my PhD studies was published!!! WOOO!

Published in the Journal of Aging Studies, the article is called:

'Expanding current understandings of epistemic injustice and dementia: Learning from stigma theory'

Put simply, this paper is about credibility. It is about assumptions that we all make about the credibility of what someone with dementia has to say. It is about the injustice that results when we assume that someone with dementia is not a credible reporter of their own experiences.

What has been really encouraging for me is that I have had lots of lovely feedback from people on social media, thanking me for writing this paper. It is really nice to know that people have read it, and that it has resonated with them in some way.

One particularly heartwarming comment read:

I’m glad this came up in my feed. Nice one!

I’ll never forget working as a support worker for a woman with an acquired brain injury. It was the end of my shift and she was refusing to leave my car. “I don’t care if you call the police or fire brigade - I’m not moving!” (At no point had I implied I was going to do any of those things). I sat there and thought for a moment.

“Are you sad I have to leave?” I asked.

“Yes,” she said. I then told her I’d definitely be back the following week to catch up with her again, and she then got out of the car without further protest. She looked sad. Honestly, people whose cognition is impacted by disability are still people. It might not be as intuitive to realise this as it is to dismiss their every expression of human experience as ‘the disability talking’ ... but it’s so important.

Disability doesn’t talk. People do. We’re all the same.

Thank you for publishing this paper.

- anonymous (shared with permission, emphasis added)

I wanted to share this story with you for two reasons. Firstly, because it shows that many of the concepts currently being talked about in dementia care resonate deeply with others in the disability space (and often concepts are borrowed and shared). I think it is because the concepts relate to human rights (for all) at the most basic level. In this case, we are talking about the right to have one’s voice heard, and to feel understood. That is just as important for a woman with acquired brain injury, as it is to a person with dementia, as it is to me. We can do justice to each other by taking the time, in interaction, to listen and understand. As the anonymous author wrote so eloquently, “Disability doesn’t talk. People do. We’re all the same.”

Secondly, I wanted to show that the true value of research and scholarly work lies here. In the stories, and the resonance. That is what it is about for me. No citation count or impact factor can capture that. That is why I’m so grateful for stories and comments such as this. They give me a glimpse into the resonance.


The article is available at https://www.sciencedirect.com/science/article/pii/S0890406518303736

Please do have a read and let me know what you think.

Jessica Young2 Comments