2 Disabled people or disabling society?
Professor Mike Oliver (1996) is an academic and disability rights activist who argues that it is society that disables people:
[The social model of disability] does not deny the problem of disability but locates it squarely within society. It is not individual limitations, of whatever kind, which are the cause of the problem but society’s failure to provide appropriate services and adequately ensure the needs of disabled people are fully taken into account in its social organisation.
The term ‘disability’ includes a range of physical and mental impairments, but a social constructionist approach, like the one that Oliver takes, would argue that society ‘disables’ by labelling people and by perpetuating stereotypical ideas about what a person with a disability might feel, think or do. Further, Oliver argues against the medicalisation and individualisation of disability and for a social model that is political rather than personal, reflecting one of the early mantras of the feminist campaigns of the 1960s and 1970s, i.e. ‘the personal is political’. As noted, one of the criticisms of the social model approach is that it ignores, or at least plays down, the individual experiences of disabled people. Arguably, it is important to take an approach that recognises issues of power and the dangers that are inherent in ‘blaming the victim’, while also recognising individual diversity of needs. However, it is difficult to argue against Bradford (1998) when he writes:
Most disabled people want to live in the community as independently as possible. The extent to which that can be achieved depends to a large extent on the accessibility of the built environment, at home and in public. Few homes are built with any real thought for more complex individual needs of the people who may live or use them.
Dewsbury et al. (2004) argue:
[M]edical or psychological models … strongly suggest an expert–client relationship in which the expert seeks to cure or at least alleviate the symptoms experienced by the client. The social model, in whatever form, has the great merit of producing an interactionist account of disability, wherein disability is seen as a construction and thus necessarily a responsibility is shared by all parties.
Without seeing the wider context, it is difficult to recognise the relationships of power and how they shape experiences as well as the reality of people’s lives and their problems and needs as individuals. The danger lies in losing sight of the individual and generalising to all people, and this can be difficult to reconcile, especially for health and social care providers.
To illustrate the way in which society can be a disabling environment is to recognise the help and support that all people need, regardless of their ability to know where they are and how to find their way. Everywhere you look in public spaces you see signs that tell you what is where. One way to help people to find their way around public spaces, regardless of their abilities, is to use signs, and in the next two activities you explore this further.
Activity 1 Giving directions
Imagine that you have been appointed to the post of Communication Officer in your local hospital, which has 32 wards and 22 departments. The hospital has a single entrance point. You note that 54 places need to be signposted.
What would you expect to do in terms of physical signage to ensure that people can find their way around? You might want to consider such things as the size of the font, where to put the signs, and at what intervals. Make notes on this or draw some sketches.
You might find that the more you look into this, the more complex it becomes, and that the sheer number of signs makes it very difficult to achieve and meet the needs of everyone. You might argue that the repetition of signs for places that are a long way away, and signage back to the entrance should be essential, while symbols and landmarks can also be very helpful. In general, signs need to be clear, well-lit and at the right height. Did you consider where to put the signs and how getting the right height could be challenging? Buildings are not always purpose-built and often have to compensate for poor design with imaginative signage. Using ‘catchy’ names rather than those of unfamiliar benefactors or alien medical terms can also be helpful in overcoming poor design features. Do you think some signs benefit staff rather than service users?
Activity 2 Essential signs
Imagine that having worked out your plan, you are called to meet with your manager to review progress on the project.
What three key principles do you want to communicate as essential features of helping patients and visitors to find their way?
How do your points compare with the following?
Signs can be more effective if they are:
- clearly visible
- translated into key languages
- colour coded so that different departments can be clearly distinguished
- consistent in where they are placed so that people know where to look
- repeated at regular intervals to reassure people that they are on the right track.
The reality is that not everyone can read or make sense of written signs, or has time to read them. In a state of stress, as one often is when visiting a medical setting, written signs can be missed or it might be difficult to concentrate on them. As another example, if you are using the underground in any large city, attempting to read tube station directions when almost everyone seems to know what they are doing can be embarrassing. It is highly likely that people with early-onset dementia and mild to moderate cognitive impairment will have a sense of shame or embarrassment about standing in front of signs for long periods. Symbols are often used on roads and motorways, partly to acknowledge that drivers might not have enough time to read them and partly to make it easy to distinguish destinations. The symbols below are examples of things that are easily recognisable and often internationally recognised.
Activity 3 Recognising diverse needs
How would you design signage for people with dementia and what would you need to consider? Provide some examples. For example, you need to recognise that some people with dementia might also be blind and/or deaf.
You might have found this challenging because of the high level of dependency on visual signs in public buildings. For non-sighted or visually impaired people, some hospitals use talking signs. Indeed, one large UK teaching hospital provides this service in nine different languages. In hospital settings there is a range of tools available to help people to find their way, including the use of volunteers to offer guidance to people who seem to be lost or in need of help, contrasting colours for each floor, department signage in black and white, and accessible and visible information desks.
One student told us:
I work in a hospital that uses coloured lines on the floor to denote departments, which are also repeated on the corridor walls with written overhead signs as well. We also use a system of volunteers to approach people who look lost and in need of help. The most common question that people ask is how far somewhere is.
Reading this made me think about the way in which airports are very clear about how long it takes people to get to departure gates because they want people to board on time. The fines for missing a departure slot cost airlines a lot of money. The information on time is not for the convenience of the customer, but this might be something that you added to your list! However, while the technology for things like talking signs might exist to overcome some of the barriers, not all regions and settings use it.
Poor design can result in compromised care. For example, it might seem necessary to constantly guide people with dementia and not let them find places themselves, or confine them to a space where they won’t get lost or hurt themselves. That is the case whatever the setting. Add to this the potential impact of being admitted to a completely new care setting and not understanding why you are there. Worse still, the place that you are in is confusing to most visitors. These multiple layers can make people with slight disorientation become much more confused. It is thus not surprising that much attention has been paid to the role of architectural design in health and social care (Marshall, 1998). Some providers have recognised the need to compensate for the lack of orientation that can be part of living with dementia (Day et al., 2000). Examples include different types of sensors to detect and monitor where people are, lighting that is triggered by movement to help to prevent falls, alarms that tell people when to take their tablets, and satellite navigational systems for pedestrians. As the population ages, there is an increasingly large industry selling well-designed aids that help people to overcome disability, and the dementia care industry is no exception.
Good design of care settings can also be encouraged through the involvement of service users, but involving people with dementia in the design of care spaces such as residential homes is not always feasible. People with dementia can be marked out as different from ‘normal’ people and are thus not invited to engage with planning of living spaces, and their cognitive impairment might make it very difficult for them to do so. In what follows you explore key aspects of creating spaces that allow for a better quality of life for people with dementia.
In the UK, some care homes have been designed for people with dementia, incorporating features of good design, and in the next activity you see two examples of such good design. One care home was purpose-built, and the other was adapted for dementia care.
In 2009, the Department of Health commissioned the King’s Fund to develop programmes called ‘Enhancing the healing environment’ (EHE) that would improve the experiences of people with dementia as part of the National Dementia Strategy. At the time of writing (2012), projects from 23 teams of mental health, acute and community trusts have shown how changes to lighting and floor coverings, and improved wayfinding, have a significant impact. In the mental health trusts they reported a reduction in the number of falls, violent incidents and aggressive behaviour, reducing the need for the use of antipsychotic drugs (King’s Fund, 2011).
Activity 4 Good design in practice
Watch the videos below about two care homes, Elmhurst and The Lodge, in which the care staff talk about the difference that the design has made to the experience of being in a care home. Note how the principles of good design have been used and consider the following questions:
- What difference has the design made to the lives of the residents?
- What do the staff and family have to say about the difference that the design has made?
- Note what it is possible to do on a low budget.
Transcript: Video 1 Elmhurst
Video 1 Elmhurst
Elmhurst Residential Care Home, Ulverston, Cumbria
Elmhurst was purpose built in 1983, to accommodate forty physically frail people. Now demand has shifted. Thirty of today’s residents have some degree of dementia. But the original building wasn’t designed to be dementia-friendly.
Beckside was the first wing to incorporate dementia-friendly design features.
Residents’ front doors now have contrasting designs and colours, which aid recognition. Doors to utility rooms are painted to blend in with the walls. Bathroom and toilet doors are painted yellow, so they really stand out.
Residents had some choice over the colours of wallpaper and furnishings.
The refurbished rooms incorporate dementia-friendly furniture and fittings.
The mirror over the sink can be hidden behind dementia-friendly wooden doors. And each of the rooms is fitted with a range of assistive technologies.
When residents are out and about, there’s plenty for them to look at.
Communal spaces now feel much more homely and welcoming.
A lot of consideration was given to the colour of the crockery.
Even the garden has been transformed, making it much more dementia-friendly.
Transcript: Video 2 The Lodge
Video 2 The Lodge
Buckshaw Retirement Village, Chorley, Lancs
The Lodge is a purpose-built residential and nursing home, designed for dementia care.
Wide, well-lit corridors are central to the dementia-friendly design.
Good design is not only about continuity, it’s also about contrast.
And everything has been designed to be dementia-friendly.
The focal point of The Lodge is the two storey Market Square.
The garden serves The Lodge’s residential and nursing communities.
Colour and contrast are important elements of dementia-friendly garden design.
And careful consideration was given to the continuity of the paving.
The two videos show the difference that the design features have made and illustrate how good design affects quality of life for people with dementia. It’s clear, too, that the impact of the environment on care staff is an important aspect of giving good quality care, as noted also by Barnes and the Design in Caring Environments Study Group (2002).
For people with dementia, being lost in time and space might be an everyday experience.
It can be very distressing to be in your own home and not recognise the rooms and layout in the same way. The key principles of the design of space apply equally to domestic settings, . Most people in the earlier stages of dementia live in a home setting, either in their own home or with family members.
Imagine that you have a family member coming to stay with you who has early-onset dementia and is no longer able to live independently. How would you be able to adapt your home? What features are relatively easy to use, and what constraints might you have in adapting a domestic home without major structural changes? This is the focus of the final activity.
Activity 5 Putting design into practice
In the figure below, you are given two spaces to design – a bedroom and a bathroom. Apply the principles that you have learned in this free course to the design of these spaces for someone with dementia. Make notes on any adaptations and your reasons for including them.
You should imagine that you will present what you have done to either colleagues with whom you work or a support group for carers of people with dementia.
This activity is designed to help you to apply the principles to a real setting. It is also hoped that if you work in a care setting, this is something that could be used in practice, at least as an item for discussion. The small-scale technologies that exist can promote independence for people with dementia. These include such things as electronic tracking devices to prevent people from getting lost, simple communication devices, water-level alarms for baths and sinks, talking labels and touch-screen technologies. Indeed, there are many hundreds of types of small-scale technologies aimed at enhancing independent living for people with dementia.