MEASURES OF PLEASURE AND INTELLECTUAL DISABILITY

A series of articles describes several research methods used in gauging levels of happiness in individuals with learning disabilities. Ruth Catherine Cullen, Psychologist in Clinical Training

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Introduction

A recent series of articles published in the American Journal of Mental Retardation focused on the issue of happiness in the lives of people with intellectual disabilities. The aim of the series was to consider how happiness can be conceptualised, measured and facilitated for individuals who have an intellectual disability. Much of the research which has been carried out in the field of disability has focused on the negative impact that having a disability can have on a person’s life. The measures used in research with people who have disabilities have often sought to measure functional limitations, such as difficulties with activities of daily living, and have not made an effort to quantify the contribution which people with disabilities can make both within their family and to their community. Crocker (2000) noted that there could be said to be in society an ‘ableist’ mind set, whereby contentment is not an expectation in a setting of diminished personal circumstances. Owing to this, there has been a gap in the thinking of professionals who work in this area, with a near absence of study or systematic concern about happiness and joy in the field of intellectual disability. With this in mind, Myers (2000) has suggested that, as well as developing ‘burdens of care’ measurements, mental health professionals working in this field should also focus on developing ‘measures of pleasure’.

Happiness has been variously described as the amount of joy a person experiences, the level of satisfaction or the absence of negative feelings. Others have suggested that it is the degree to which an individual judges the overall quality of his or her life to be favourable. However it is conceptualised happiness is recognised to be a very subjective experience. This raises questions in relation to how it can best be measured. A wide range of scales and inventories have been developed with the aim of finding out about people’s happiness. However, when carrying out research into the happiness of people with intellectual disabilities, additional challenges must be faced. These include the ability of a person with an intellectual disability to understand what they are being asked, the dynamic of acquiescence (i.e. the tendency to answer a question affirmatively, regardless of the content of the question), the tendency to select the last alternative given, and also the provision of answers that are thought to be the ones expected.

Approaches have been developed to overcome some of these difficulties. The use of a proxy (a person who knows the individual with an intellectual disability well) is common in research where the disability is severe. The appropriateness of using proxies is equivocal, and some research suggests that this is not a reliable technique (Rapley et al 1998). Others have even suggested that it is unethical to use the responses of proxies as representative of service users. However, in research which used the average of the responses of two proxies, Schalock and Keith (1993) found that their responses were within the acceptable limits of representing the client’s point of view. One of the more innovative developments is to employ people with intellectual disabilities as trained interviewers. The rationale behind this is that they would be able to support the respondent with disabilities better than a traditional interviewer. While early findings from the use of this approach are promising, the full implications of such a methodology have yet to be examined.

The other approach which has been employed in research on happiness with an intellectually disabled population is to use an observation procedure. Green and Reid (1996) used objective indices of happiness such as laughing and smiling to measure how much happiness particular stimuli induced in the respondent. However, Helm (2000) warns that this method also has some pitfalls; smiling or laughing in a person with intellectual disabilities may also be related to physiological reactions or emotions other than happiness. In general, Helm (2000) concluded that the use of a variety of methods, combining results from both subjective measures such as self-appraisal and more objective measures such as observations and functional assessment, will increase the validity and reliability of research when examiners are studying subjective experiences of people who need additional supports to understand or respond to questions.

In general, a review of the happiness literature reveals that long-lasting happiness does not appear to depend on material wealth, good looks or even good physical health. Issues such as working for one’s goals, participating in close social relationships, experiencing recurrent physical pleasures, experiencing mental pleasure and engaging in leisure activities are factors which contribute to long-lasting happiness. Regardless of how one’s happiness is measured, by assuming that happiness for individuals with intellectual disabilities is composed of similar elements to those that are important to persons without disabilities, we can forge ahead in developing experiences and opportunities which contribute to the likelihood of people with intellectual disability obtaining a sense of long-lasting happiness (Helm 2000).

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