Utility hacks

As has been outlined before, hacking spans many different areas and new areas of engagement such as health are currently explored. In this post I want to focus on hacks in relations specifically towards assistive technology. The post covers both general insights into the use of assistive technologies and utilities as well as reports related specifically to dementia. In the context of this blog I am going to use the terms assistive technology and utilities interchangeably and follow the definition provided by Forchhammer (2006, 131): “In professional practice, utilities are defined as those objects that are offered to patients in order to ease their daily lives by compensating for disturbances in certain functions.”

Assistive technologies are always embedded int a wider context as for example observed by Forchhammer (2006, 131):

“Utilites – and other things – are used in complex social practices: complex arrangements of people and material surroundings, imbedded in larger contexts of other societal practices and discourses. And furthermore, the use of things is an ongoing practice.”

Also in this context the considerations about the role of the user come into place.Even though Forchhammer (2006, 131) refers to utilities as objects with an “intended technological use”, she also outlines that this can change when the object is used: “Utilities can be used for many things and assigned many different meanings. Their function can be transformed into new and different functions that were not thought of before. (Forchhammer, 2006, 132) As these objects are used in a wider social and material context, the way the objects can be transformed is not unlimited in her opinion, but subject to certain limitations:

“Not only do the physical characteristics of the object thus place constraints on how the object may be used, but also societal thought forms, discourses, ideologies and power-relations are manifest in the concrete use of technologies.” (Forchhammer, 2006, 133)

Epstein (2003, 174)calls for an awareness of certain power structures within design and development for health and in relation to the users:

“However, the fact that medical knowledge and practice may be transformed by organized political activity on the part of ‘objects’ of research or ‘users’ of medical devices ought to inspire closer attention to the sometimes peculiar patterns by which ‘groupness’ is established. What are the politics of representation by which individuals, organizations, or coalitions invoke the interests of social groups and speak in their name when calling for the reform of expert practices?”

When reporting her study, Forchhammer (2006, 138) makes an observation that to me relates to the concept of tacit knowledge:

“That is, the participants had made small changes and adaptations – action – probably without taking any notice of these changes. The participants did not mention these changes spontaneously, but the changes became clear the minute I asked the participants to show me how they used a particular item or how they followed a certain procedure.”

This is important not only practically as it might influence the methods I use to interview participants in my study, but also  opens up the question of consciousness of the design/alteration process.

Gibson et.al. undertook a study in which they analysed how assistive technology was used both by people living with dementia and their carers. When describing the methods, they made a strong point for interviewing both people living with dementia and their carers individually:

“Where possible people with dementia and their carers were interviewed individually. One interview was conducted with the person with dementia, with a further interview being carried out with informal carers by a second interviewer at the same time. This process ensured that views and awareness regarding AT among carers and people with dementia, and any differences between them could be explored separately.” (Gibson et.al., 2015, 2)

The study further reveals that assistive technology was not only used to different ends by both parties, but that people also felt different about the tools used. They conclude that:

Notwithstanding it was family carers who appeared to receive greatest benefit through maintaining the person with dementia’s safety, and minimising their anxiety, rather than facilitating their participation in everyday activities. (Gibson et.al., 2015, 8)

Self-sourced or altered technology, called ‘Do it yourself AT’ in their study, plays a great role in the everyday use of people living with dementia:

“Finally, the most common devices used by participants were ‘do it yourself ’ AT, in which everyday household technologies were used to fulfil AT functions. Groups of AT in this category included: commercially available devices such as telephones, remote controls or kitchen appliances; simple devices such as whiteboards or post-it notes and the creation of individual ‘AT solutions’ using readily available information and communication technologies.” (Gibson et.al., 2015, 3)

They further distinguish two types of this kind of assistive technology. They distinguish between items bought in an repurposed:

“Do it yourself AT could be simple or complex, were usually used in the absence of any formal AT equivalents, and were purchased from commercial retail sources such as online retailers, catalogues or high street stores.” (Gibson, et.al., 2015, 3f)

and items physically altered:

A second feature of ‘do it yourself ’ AT was modifying and adapting existing household products to make them easier for people with dementia to use, or using existing technologies in novel ways. (Gibson et.al., 2105, 4)

Even though they gie little examples of this kind of modification, something my study would focus on at the moment, they do give an insight into the motivations behind ‘do it yourself ‘ solutions:

Such devices were used in place of formal AT, either because carers did not know about their AT equivalents or how to access them, or because carers preferred to develop their own alternatives to AT using everyday technologies. (Gibson et.al., 2105, 4)

Another points that plays into the consideration to use existing technologies is the perceived high price for ‘specialised’ products:

“Perceptions regarding high formal AT costs, particularly when compared to generic household products which fulfilled similar functions therefore posed a key barrier both for the general acceptability of AT products, and for the continuing  development of a mixed economy of AT provision in dementia.” (Gibson et.al., 2015, 8)

One theme emerging from different accounts of how people interacted with assistive technologies is the anxiety of it ‘going of’. Comepare for example Greenhalgh et.al. (2013, 91): “It was common, for example, for people to tie pull cords out of theway, and one participant’s son had taped a jam-jar lid over an emergency alarm button in her hallway “to stop it going off” (Nadine, African, age 90: recent severe stroke).”

The two studies presented in this post so far make a clear case that technology is embedded into a wider context and as such might not be a static, but more a fluid experience. They provide useful information in regards to methods used which can influence my own interview plan. Follow up questions are: What factors influence the decision to alter existing products? How can alterations behavoiur changes be measured that are not done consiously or not recongised as an alteration? In how far can these alterations really classify as a hack?

Gibson, Carnivale and King (2012, 1895) take an explicitely postmodern view on disability and assistive technolgy and emphasise the fluidity of roles and adaption:

“The binary division between independence/dependence has its roots in the assumptions of the sovereign, autonomous self which is contained within a physical body – the division of self/other as individuated subjects. “

Questioning this division the authors suggest that the distinction between the self and assistive technologies becomes blurred: “Within these assemblages there are no clear distinction between persons or between persons and technologies. The very notion of the “person” itself is called into question.” (ibid)

Following this view, utitlity hacking could be considered an ‘identity hack’, a change in oneself. A follow up question on this is in how far this relates to strategies developed to deal with illnesses such as dementia and how far this distinction relates to the material self.

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