Writing my literature review just did not go well lately. I am caught in this annoying phase in which things are not yet fully ‘together’. When the structure does not really flow and sentences still circle the issue rather than expressing it.
To make this feel less of a wasted day I turned to this reflection. Even though I am fully aware that it is important to ground my research in the literature to ensure that I do not follow a whim, I also find it easy to lose myself in the literature. Lose what drove me towards this project and what will hopefully drive me through.
One thing I find really important is that this project and the first turns it took are motivated by anger. Anger about the derisive language with which people with dementia are addressed, the passiveness and lack of agency that is attributed and the resulting products, many of which I find dehumanising. Dementia is considered as a static thing in many of these projects, affecting people who have either come fully to terms with the diagnosis or who are too far gone to understand. With earlier diagnosis, more awareness and from my own family history there is a third state. A state of ‘becoming’ a person with dementia. Negotiating what this means. With oneself. With others.
Technology that could be useful in this area needs to be very different from what is available today. It needs to be exploratory, ambivalent, conflicing and disruptive. Following from my MA project I am interested in the role technology can play in this negotiation. Something that I have not seen yet, but something that I find exciting as a tool to charter new waters, learn and understand.
Because I am coming from a point of anger and the view that things are going wrong at the moment, I find it hard to accept this project as a ‘nice little’ design exercise. I do not want to play it safe, I want to disrupt, confront and pose questions rather than answering them.
I got very angry about the projects that I consider unethical, especially in regards to privacy and the way that others address people living with dementia as passive. From my literature review I have come to accept this as my values, which are shared by some, but not by others.There is no right or wrong answer, but it looks like everyone needs to find an individual solution. Current technologies in my opinion do not support this, for two reasons. Firstly they are not very adaptive, giving little choice of how to interact with each other through them. Secondly they become invisible, hiding away in the background. Even though this reduces stigma and might be supportive it takes away contol and possibly gives way to coercive methods.
Understanding how much I oppose these technologies and reading how people using them have actually been allright with them, has been a real eye-opener to me as it has shown how easy it is for designers and developers to impress their own values onto technology. Which is why I argue towards technologies that are ‘hackable’, technologies that can at least be adjusted at best made by the people who will use them. I am slightly vary at this point of participatory design projects that lead to single use devices. Even though I understand how emancipatory they can be for everyone involved, they often set out to answer questions, close down the discussion rather than opening it up.
So, 500 words on why I am angry. Where do I go from here? This little execise has shown me two things: Firstly I am really interested in the role technology can play within communication. Computer-Human Interaction as interactions between humans via computers. About dementia, about technology, with people concerned, with the general public. I need to break down who I want to reach to narrow down my project at this stage.
Secondly I consider technology in dementia care as too prescriptive. Something I would not like to be used on myself. I want to explore ways of opening up technologies in a way that people can use them in the way they want.
I am still unsure whether I have to focus on one of those areas or if there is a question that links the two of them. It has become clear to me though during writing this that I want to use design methods to explore the topic: design fiction and speculative design as well as design prototypes as tools for exploration.
Another important point is that monitoring technologies in dementia care are an example for me, not the topic. It is an interesting area to venture in as the conflicts are researched and worked out, but the role of technology within it is still debated. And this is my point of interest: the role of technology. I do not want to create better products in dementia care, but I want to enhance the way current trends in technology shape our behaviour, particularly in regards to communication.
I think that a study of this kind, that explores monitoring technologies and its future implications gives interesting insights into other technologies, opens a discourse more generally about Smart Houses and the Internet of Things. It will give insights into the role of the user within these systems and how they might form our behaviour. Towards the technology and each other.
Elements of my question:
- What role does technology play in communication about values in dementia care?
- Can design methods open up the discussion about individual values and preferences?
- Can alternative technologies open up the discussion how we will engage with health care in future?
- Can design prototypes help us to understand how to design for a user with changing needs?