Exploring leisure for people with profound learning and multiple disabilities: a literature review

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Brightbill and Mobley (1977) define real leisure not as enforced free time but rather as the opportunity to choose freely those activities of greatest preference and interest from a variety of options. Choice is the essence of leisure, and it is this element of choice that differentiates leisure from what might be considered therapy, although many leisure activities have therapeutic benefits.

For persons with profound and multiple disabilities, the constraints on their lives may limit their leisure resources and affect their informed choice of preference, and their indication of that preference. Systems must therefore be developed and adopted to enhance their participation and autonomy.

Carey et al. (1996) report that a systematic assessment procedure should be implemented to present reliable information about individual preference, when identifying preferred activities for people with severe and multiple disabilities.

Hawkins (1993) observes that caregivers and professionals can assume prescriptive attitudes, taking on the role of deciding what free-time activities will be pursued, especially in the case of persons with profound and multiple disabilities who are reliant on interventions or assistance in meeting their needs. Above all else, these people have a right to the opportunity to experience and sample a range of leisure pursuits; carers must be responsive to their wishes, allowing them to ‘opt out’, and adapting an activity or pursuit to best suit the individual.

Wade and Hoover (1985) identify external and internal factors among the constraints on leisure opportunities for people with learning difficulties. External constraints include institutionalisation and societal attitudes, while internal constraints are deficits in motor skills, cognitive skills or physical fitness.

Rose and Massey (1993) investigated an expedition to the French Alps undertaken by seven people with severe learning disabilities, with fourteen non-disabled people. The positive benefits of the experience, elicited through interviews, were seen as: sense of achievement, development of cooperation, enhancement of self-esteem, fitness, trust and role-reversal experience.

There are some leisure environments which are designed with the particular needs of people with profound and multiple disabilities in mind. One such specialised environment is ‘snoezelen’, as described by Cavet and Mount (1995). The term (composed of two Dutch words for sniffing and dozing) has been used variously to indicate specialised environments and equipment, as well as an overall approach to service users which emphasises relaxation and pleasure. Multisensory environments are, in essence, a collection of devices and equipment which offer sensory experiences in a specialised environment. Some critics, such as supporters of the social role valorisation philosophy of Wolfensberger (1983), may find this a ‘segregationist’ environment. However, Hutchinson and Haggar (1991) evaluated a snoezelen leisure resource at Whittington Hall, where staff expressed the view that it widened residents’ leisure options.

Lambe (1995) reports an awareness by the National Federation of Gateway Clubs (Britain) that they did not provide adequately for potential club members with profound and multiple disabilities. The Mencap Profound Retardation and Multiple Handicap Project (PRMH) Leisure Resource Training Pact has been produced, with the participation of Gateway and the Hestor Adrian Research Centre (HARC). Over three years, materials and activities were researched which would contribute to high-quality leisure provision for people with profound and multiple disabilities. Although the pack was designed for individual use, it has potential as a resource manual, particularly in training volunteers working in leisure services.

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