Disability and Psychology Studies: Growing into maturity? Dr Ashley Craig Professor of Behavioural Sciences Department of Health Sciences Associate Dean (Research and Development) Faculty of Science (UTS) Abstract Psychology studies of disability have been accused of concentrating its research effort on the individual’s psychological status and response to the injury or disability, quite often without any consideration of the social context. Today I would like to explore this phenomenon by examining four issues I believe are currently relevant in this area. The first involves the search for an appropriate definition of disability (as for instance, in contrast to impairment) that encourages robust and useful research that can be applied to improving the quality of life of those people with disability. Of course, the many types of disability and the differing severity of disability make this task even more difficult. The second concern involves the type of language that psychologists use in their description of disability and their perception of those with a disability. There is a dawning realisation within the discipline that one’s view of, and perception about a disability does have an important impact. For example, a particular view may well influence outcomes of research, and this could bias the way the results are presented to the media, resulting in the community having negative stereotypes about those with a disability. Negative stereotypes may well lead to discrimination and prejudice. A third issue is the increasing trend in Psychology to study disability with a larger lens. That is, many psychologists are beginning to expand their research paradigm by discarding a reliance on the medical/disease model, and explore the problem from a broader context of researching and understanding. Mind you, a psychologist who does explore disability in this way may suffer negative consequences, such as reduced success in competitive research grants, as their approach may be seen as low in scientific merit. A fourth concern is a reluctance and a nervousness of becoming engaged in services to the disabled, especially those with severe disability (such as in neurological disabilities like spinal cord injury), even though best evidence suggests that appropriate intervention can result in immediate and long-term improvements in quality of life for those with disability. These four issues will be discussed and examples from my own research will be used to illustrate the current scene in the area of disability studies. Introduction It is true to say that psychology studies of disability have largely focussed on the association between psychological factors and disability. For instance, psychologists typically evaluate the psychological impact of a particular disorder and how it influences coping and adjustment. They would typically measure cognitive and behavioural factors such as personality, attitudes, perceptions, coping behaviour, relationship behaviour, and so on. Furthermore, psychologists over the past years have begun to emphasise the importance of evidence based health practice, and so there have been a number of recent studies that have scientifically investigated the efficacy of psychological treatments designed to improve the quality of life of those with a disability. Unfortunately, consideration of social factors (such as the social context, cultural factors, financial matters, living skills, etc.) do not always figure highly in these psychology studies. This state of affairs clearly needs rectification. However, in defence of psychologists, things have begun to improve in this regard. For instance, I recently conducted a literature search in PsychInfo using the keywords “disability” and social issues/ change etc.” and came up with almost 40,000 research articles since 1986. In my own research we have been studying disability in a wider context for some years. For instance, we have investigated long-term adjustment in people who have spinal cord injury. Factors that we have evaluated include those commonly looked at by psychologists/ psychiatrists, such as the prevalence of anxiety and mood disorder, pain, coping, and perceptions of control (or feelings of helplessness). However, we have also investigated long-term outcome issues in terms of occupational status, quality of life, relationships, ability to use technology designed to improve independence (eg. Mind Switch Control Systems), compensation, hospitalisation, and drug intake. In other words, we have attempted to research quality of life broadly, and defined quality of life to include those things any person regards as important to one’s living, enjoyment and happiness. We are always keen to broaden our research to include aspects that we have not included that would be considered important to living. I would like to now explore the current scene in disability studies from a psychologist perception, highlighting issues that in my mind deserve attention. Current issues in Psychology studies of disability Notwithstanding the somewhat negative comments above, it is my perception that the status of psychological studies of disability is changing for the better. I believe it is as a whole, growing into maturity. Of course I speak from a health/clinical psychologist background, and thus I cannot speak with any great authority for other psychological disciplines, such as social psychology perspectives. There are four areas that I would like to briefly comment upon in this regard. 1. Definitions Attempts to attain a consensus view on the definition of disability have been problematic. It is difficult for health scientists and clinicians to define adequately even specific disabilities (eg. stuttering, migraine), let alone attempts to define disability in a general sense. Disability potentially can mean many things and cover quite a broad area. For example, medical dictionary definitions (eg. Dorlands Illustrated Medical Dictionary, 2003) are not always very helpful when they define disability as the “lack of ability to function normally”. Likewise, it is a little confusing to describe disability by saying that it is “is anything that causes disability”. Some definitions attempt to narrow it down by describing it as “physical or mental incapacity”, though I doubt whether this helpfully resolves the problem. Other definitions emphasise the tragic/traumatic nature of the disability. Using the above descriptions and definitions, it becomes obvious that every living person has a disability of some nature. In fact, in the development of an appropriate definition of disability, this may well be an important feature to accept. However, it also becomes clear that the extent of the disability is usually determined by the degree of impairment associated with the disability. A better attempt to define disability can be found in Stedman’s Medical Dictionary (27th Edition, 2000) where it uses a World Health Organisation definition. That is: “any restriction or lack of ability to perform an activity in a manner or within the range considered normal for a human being”. This definition defines disability not so much as a tragic life occurrence, but concentrates on the impairment as an important component of the problem. Let me illustrate this with an example from my research into a prevalent speech disability called stuttering. In my research in this area, I usually define stuttering so that we can accurately identify individuals who stutter, as well as assess aspects of stuttering that are important for measurement and outcome purposes. I have defined it as: “interruptions to the fluency and flow of speech, where the person knows what he or she wishes to say, but is unable to because they are experiencing either: (a) involuntary repetitions of syllables, especially when starting words, (b) involuntary prolonging of sounds and (c) unintentional blocking of their speech” (Craig, et al., 1996, p. 811). It can also involve unnatural hesitations, interjections, restarted or incomplete phrases, and unfinished or broken words can also be part of the problem. Associated concomitant overt symptoms can include eye blinks, facial grimacing, jerking of the head, arm waving and so on. As a child grows older there is a risk that these concomitant behaviours will become more pronounced and the child can develop fears of talking that may affect vocation, social mixing and so on....” Stuttering is believed to be a neurological disability that mostly affects the neural systems involved in the motor aspects of speech (Craig, 2000). While it can be a debilitating disorder for some, the definition does not need to state this. Our definition focuses on the behavioural and social factors important in the disability. We have conducted epidemiological studies of the prevalence of stuttering, and found that while up to 1% of the population stutter, only about 30% of this 1% believe they are severe enough or sufficiently negatively affected by the disability to warrant treatment. Furthermore, it is very important to determine any psychological and social risks potentially associated with a disability. In stuttering, the long-term social risks to children if not assisted in some way are important to understand. As communication is known to be very important for social interaction, stuttering can create barriers to normal social and psychological development. Coping poorly with stuttering over many years can become associated with problems such as abnormal levels of anxiety and distress, feelings of helplessness, lowered employment opportunities and lower than desired quality of life (Craig, 2000). 2. Language The language used to describe a disability in Psychology or elsewhere, is a crucial factor in the maturing of a discipline. Language is a powerful tool, and when misused it can cause substantial damage. For instance, if a nurse is asked to wash bed 9, the potential to dehumanise is high, not only for the person in the hospital bed, but also for the health professional. If a psychologist labels someone as a “stutterer”, or as “neurotic”, “mad”, or a “cripple”, there is significant potential to dehumanise and the opportunity is increased for negative stereotyping to occur. Eventually, this may also increase the risks of prejudice and discrimination. It is more appropriate therefore, to be very careful how one describes a person with a disability. Psychologists are beginning to understand this relationship, and are consequently attempting to clean up their act in this regard. In some ways, principles of natural justice should prevail. We should not unnecessarily label a person, but if we must, it is better to describe the person with a disability objectively with as little emotion as possible. For instance, rather than use “stutterer” it should be a person or child who stutters, and those who stutter should be regarded as having all opportunities open to them as others who do not stutter. 3. The research paradigm In its struggle to develop its identity, Psychology has in the past strictly adhered to a medical/ disease model as its paradigm in order to guide and fashion the way the discipline scientifically investigated disability. This has of course, limited the questions that could have been asked and therefore, it is more than likely that the scope of the psychological (and medical research) could well have been limited. A research paradigm is a mode of viewing the world which underlies the theories and methodology of science at a particular time in history. Therefore, it follows that the paradigm that is in vogue will largely determine the questions and answers that are asked and delivered by science. As said above, this has placed limitations on Psychology studies in disability. Of course, it is my view that science is not capable of answering all questions posed. A person who believes this is slipping into scientism, an excessive belief in science. The best scientists are those that have a liberal dose of scepticism and who understand the limitations imposed by the scientific method they are using. The way forward for Psychology studies is to explore disability from a broader context of researching and understanding. Mind you, a psychologist who does explore disability in this way may suffer negative consequences, such as reduced success in competitive research grants, as their approach may be seen as low in scientific merit. 4. Involvement in professional services A fourth concern I have is a reluctance, nervousness or perhaps even a lack of interest of clinical psychologists in this country to become involved in services to the disabled, especially those with severe disability (such as neurological disabilities like high break spinal cord injury, motor neurone disease etc.). Recently, I have written two clinical forum papers for the Clinical Psychologist, a refereed journal of the Australian Psychological Society and the College of Clinical Psychology. The main aim was to educate, via critical synthesis and review, clinical psychologists about two neurological disabilities (stuttering and spinal cord injury) and to challenge them to become more involved in these areas. There are good reasons for them to become more engaged. First, as a profession, they have excellent services to offer, Second, confidence should be high as best scientific evidence suggests that appropriate psychological intervention can result in immediate and long-term improvements in quality of life for those with a neurological disability such as stuttering and spinal cord injury. I am hopeful that the profession will respond to these challenges and that we will see a greater interest of clinical psychologists in severe disability. Conclusion In summary, I believe that Psychology studies have largely ignored important aspects of living and focused too much on psychological factors that are somewhat irrelevant if not studied in a broader context. Also, psychologists have tended to focus too much on the negative side of disability (eg. psychological morbidity), rather than concentrating on the larger picture (life). Many people with disability actually can enjoy life and live it “normally”. However, I have also attempted to describe how Psychology studies in disability is improving its game, and growing up into maturity. May I conclude with reference once again to aspects of my own research. It is clear that disability can be a very traumatic affair. We have shown that the personal impact of Spinal Cord Injury (SCI) is substantial (Craig & Hancock, 1998; Craig et al., 1999). Independence, sexual intimacy, raising a family, financial security, vocational security and leisure/sporting activities post-injury are all a challenge. But perhaps that is also the case for able-bodied persons!! While continued excellent medical, technological and psychological advances are imperative, there exists an urgent need for professional psychologists (and others) to listen to the voices of those with severe disability. This dilemma was well expressed by a person with quadriplegia in a letter to the Medical Journal of Australia (Lightpole, 1991). The writer made it obvious that he was living as normal a life as he could given his impairment (working, a family etc.). However, he made an earnest plea for health professionals to listen to the needs of those with SCI in order for them to develop a better understanding of the real impact of SCI. He especially asked for improved psychological support services. This, in my mind, highlights the importance of improving Psychology studies and encouraging it to grow into maturity. References Craig, A. (2000). The developmental nature and effective treatment stuttering in children and adolescents. Journal of Developmental and Physical Disabilities, 12, 173-186. Craig, A. & Hancock, K. (1998). Living with spinal cord injury: longitudinal factors, interventions and outcomes. Clinical Psychology & Psychotherapy, 5, 102-108. Craig, A., Hancock, K., Chang., McCready, C., Shepley, A., McCaul, A., Costello, D., Harding, S., Kehran, R., Masel, C., and Reilly, K. (1996). A controlled clinical trial for stuttering in persons aged 9 to 14 years. Journal of Speech and Hearing Research, 39, 808-826. Craig, A., Hancock, K., & Dickson, H. (1999). Improving the long-term adjustment of spinal cord injured persons. Spinal Cord, 37, 345-350. Lightpole, E. (1991). Quadriplegia: What I feel. Medical Journal of Australia, 154, 562-563.