V. Salisbury

Housing and Accommodation

Finding suitable accommodation or adapting existing accommodation can be a major problem for someone who has to resume his life in a wheelchair. But there is a more fundamental point than that: Accommodation is a basic human need. The physical and mental health of disabled and able-bodied alike is threatened by homes which are inadequate or lack basic amenities, and the behaviour of all occupants is restrained by dwellings which are structurally unsuited to their physical characteristics; cupboards and sinks of the wrong height, for example, cause discomfort and inconvenience to people who have no impairment other than being too short or too tall. (Borsay, 1986:68) Living in a wheelchair increases the likelihood that housing will be unsuitable, for a recent report has estimated that while there are 400 000 wheelchair users in Britain, there are only 42 000 purpose-built or adapted dwellings in the public sector and only 11 000 in the private sector (Ounsted, 1987).

Spinal Cord Injury in Context

Up to about 40 years ago, the chances of survival of a paraplegic patient were poor, as they had been some 5000 years ago in Egypt, when surgeons first described this condition. Ambrose Pare (1510–1519) was the first modern surgeon to recommend an operation to relieve spinal compression, but it was not until the eighteenth century that the first laminectomy of a fractured spine was performed at St. Thomas’s Hospital, London, by the surgeon Henry Cline.

Significant Living with a Spinal Injury

Throughout this book, we have stressed the importance of meaning for understanding the lives of people with spinal injuries. One of the central ways of giving meaning to life for everyone is through participation in the work process. However, work opportunities are not evenly distributed throughout the population (Lonsdale, 1986) and the question of whether disabled people can have a meaningful life without work has been raised (Warnock, 1978). Work, of course, does not offer only economic benefits for those who have it, but also psychological and social ones, in that it can give a sense of self-esteem to the worker and also provide friendships and a whole range of social contacts which would not otherwise be available.

The Present Study

The purpose of the project described in this book was to carry out an investigation of what has happened to people in the United Kingdom who have experienced a spinal cord injury, for little is known about what has happened to the majority of spinally injured people over the years. Consequently, inadequate attention has been given to the long-term implications of spinal cord injury. It is not known, for example, what impact spinal cord injury has on the processes of personal, family and social life, or what implications it has for employment, or housing, or services. There has been very little published on what happens to people after their injury, what medical problems arise, how life carries on after discharge from hospital and how people cope. The project set out to redress the lack of information currently available about what actually happens to people with spinal cord injury after they leave hospital, to look at this issue in detail, and to explore some of the factors influencing social adjustment. (The full research report has been published separately: Creek et al., 1987.)

Conclusions: What Kind of Life?

Since the end of World War II, the progress of medical science and rehabilitation has literally transformed the lives of many thousands of paraplegics and tetraplegics, who previously would, quite simply, have died. However, the central issue for the late twentieth century is not whether people with a spinal injury can be kept alive, but what kind of life they can expect. This issue of the quality of life is of central importance, not just to those already spinally injured, but also to the 400 or so who will continue to be so injured every year into the forseeable future. Therefore, in order to improve existing services and plan and deliver future ones, it is important to have a clear idea about what is wrong with the existing pattern of provision. To paraphrase an often-quoted saying, ‘we can’t possibly know where we are going unless we know where we have been’. It is particularly important to have an understanding of the defects in services and provision from the point of view of those who use, and in many cases are reliant upon, them. As far as we are aware, ours is the first study which attempts to provide this point of view, at least in respect of people with spinal injuries.

Perceptions of Medical and Social Services

In this chapter, we attempt to convey spinal-cord-injured individuals’ perceptions of health and social services both during the hospitalisation period and in the community, following discharge. Professionals play a key role in determining access to, and delivery of, a whole range of services both in hospital and in the community. Thus, they can have a significant effect on the direction of the disability career.

Personal and Family Responses to Spinal Cord Injury

In this chapter we shall discuss the impact that spinal injury has upon the individual and his family. The conceptual framework developed earlier will be used to discuss the data, and we shall illustrate our examples with quotations from the individuals with a spinal injury and from other family members who participated in some of the interviews as key informants. Before presenting the data, however, it is necessary to discuss further our conceptual framework and, in particular, to explain our usage of the term ‘social adjustment’.

Leisure, Social Life and Mobility in the Community

In this chapter we shall consider some of the restrictions on social and leisure activities experienced on return to the community. We shall also describe various ways in which people adapted to these restrictions over time. In keeping with our conceptual framework of the disability career, the main focus will be on the changes people had made in their social and leisure activities, and their changing perceptions of this area of their lives.

The Financial Consequences of Spinal Injury

As with unemployment, it is true to say that poverty is unequally distributed and in this unequal distribution disabled people get more than their fair share of this poverty (Townsend, 1979). It is generally recognised that the financial consequences of any disability may be deleterious, as a recently published statement shows: Even taking account of the available benefits, people with disabilities are still more likely to suffer from poverty than are non-disabled people. Also people who are equally severely disabled can receive widely differing amounts of money according to the cause or origin of their disability, their national insurance contribution record, their age, or their marital status. (Disability Alliance, 1987) The Disablement Income Group (1987) has recently shown how this latter point may operate specifically with regard to spinal injury. A person who is paralysed from the neck, whose injury occurred at work, would get £199.45 per week in benefits; someone who has paid National Insurance contributions but was injured at home would get £91.30; and someone whose injury occurred at birth would get only £75.85. Someone in receipt of legal compensation would probably get in excess of £400 000 for such an injury.