Dementia, or shall we say the disease that underlies of dementia is considered and legally defined as a disability.
Testimonial epistemic injustice may be described as a hearer not lending credibility to, not taking seriously, what a speaker says, because of a (quite likely) unconscious bias towards that person. It may be based on having a disability, including dementia.
I think we are all aware of the negative stereotyping of people living with a diagnosis of dementia. They cannot speak for themselves, they lack mental capacity, and they rely on other people to do things for them. This stereotyping has existed in our society for hundreds of years. Dementia has been viewed and stigmatised as madness or idiocy for a long time, in many societies across the world.
Even now, in our supposedly more enlightened times, there is a testimonial, epistemic injustice, whereby so so-called experts, do not give equal credibility to what a person with dementia does or says. A person hearing the testimony or evidence of lived experience of dementia may make an assumption that they cannot rely on what they hear…because the speaker has a disability. This is epistemic injustice, and it is rife in our dementia world.
The Dementia Enquirers project has been about enabling people living with dementia at whatever stage of the disease to design their own studies, carry them out and report on them. Broadly speaking, these Enquirer research projects have been about things that matter to us, we who live with Dementia. They have not been esoteric and/or academically obscure. Projects have been developed out of real life situations for people with dementia, for example, enquiring whether people with dementia across the UK receive an annual dementia review in primary care, or about the difficulties that people with dementia face when using public transport.
I think it is fair to say that until recently most researchers would have said that a person with a cognitive disability would be unable to carry out research because they would have assumed that we do not have the intellectual capacity. They may even have assumed that we lack decision-making capacity or indeed legal capacity to do anything for ourselves. This misconception, I believe, stems from the historic social stigma surrounding many disabilities, in particular cognitive disability caused by brain disease.
An example we often experience is the solicitor who assumes lack of legal capacity just because of our dementia diagnosis. Furthermore, I often hear stories where the solicitor has not even been able to (or tried to) carry out the relatively simple process of establishing legal capacity (or not).
Historically, the medical profession has often ignored people with a cognitive disability, possibly because they could not explain it in contemporary medical science, and have therefore taken the view that nothing can be done for us. There is currently some disagreement in the medical world about whether many of us with a diagnosis of dementia even have dementia at all. This seems to be based on the evidence that we can still speak and write and ‘perform’ in public.
We can still learn to do things like painting, and we can do our own research. It would appear that this (admittedly very minority) view, stems from misconceptions about the disease. Thus, it is a form of testimonial, epistemic, injustice or indeed discrimination that regards people in the early stages of the disease underlying dementia as not being what they and the societal stereotype describe as having Dementia.
We may describe our symptoms as transitory, with good days and bad days and indeed good hours and bad hours, but they really do exist for us. (We often say that we can summon our faculties and strength to ‘perform’ in public; you do not then see the downtime we need to recover.)
Why would we pretend to have brain disease? We have been diagnosed, usually by members of that same medical profession. When a so-called medical expert of academic standing accuses us of fraud, (in effect that we lie about having a diagnosis that we have been given) I think it reveals unconscious bias and epistemic injustice.
Returning to research, I think that the research community, which is traditionally an academic, intellectually demanding discipline, has built up high walls around its work, possibly, or in part, to protect their domain of expertise and credibility. There is probably a degree of fear about letting people in to their community and their work who do not have their own high academic credentials. And we hear comments and questions such as ‘they won’t understand’ and ‘they can’t learn’. ‘They won’t be able to sort out ethical approval’.
I think Dementia Enquirers has proved that while (and I accept this) our research projects are not hugely academic or scientific, they do relate to the important things in our lives, and and they are based on appropriate ethics and processes which are reliable.
Epistemic injustice arises, I think, from a basic human condition…survival of self. Stereotypes and stigma are usually based on fear…and used to denigrate and dismiss those who we perceive might challenge our position.
And we humans find it simpler to ‘see’ a stereotype than to seek the ‘truth’ about a person we encounter. It’s quicker. It enables us to cast blame. And it enables us to retain our precarious place in the societal hierarchy.
I think unconscious bias is inherited in our archetypal collective unconscious! and our society norms often reinforce it. This is something we can only control with effort. We cannot help but inherit societal and cultural stereotypes. We CAN be aware and make the effort to control our responses.
george rook 