Impairment. Disability and Handicap• Introduction• Health was defined in the WHO Constitution as “a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity”. More recently, the concept has been extended to include health-related quality of life.• Impairment Any temporary or permanent loss of abnormality of a body structure or function, whether physiological or psychological. An impairment is a disturbance affecting functions that are essentially mental (memory, consciousness) or sensory, internal organs (heart, kidney), the head, the trunk or the limbs.• Disability A restriction or inability to perform an activity in the manner or within the range considered normal for a human being, mostly resulting from impairment.• Handicap This is the result of an impairment or disability that limits or prevents the fulfillment of one or several roles regarded as normal, depending on age, sex and social and cultural factors. The roles so defined must be universal as possible. They are known as survival strategies and include the capacities to position oneself within one’s environment and respond to environmental stimuli, to conduct an independent existence in a normal fashion according to sex, age and culture (employment, household tasks, raising children, and physical activity such as games and other forms of recreation), to maintain social relationships, and to pursue a socioeconomic activity and preserve self-sufficiency. Handicap thus results from a health condition and is linked to factors such as individual resources and the collective environment. It is made up of circumstances that place individuals at a disadvantage from the standpoint of societal norms. In 1993, WHO put forward a definition of quality of life linked to health (3): the perception by individuals of their position in life, in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.
Impairment. Disability and Handicap• Social Factors This has enabled distinctions to be drawn between impairment (defined as disturbance of the normal structure and function of the body), disability (inability to carry out tasks) and handicap (where the role of the person is disadvantaged). However the classification has been criticized (or at least the handicap dimension has) by some people with disabilities. Thus someone is not disabled because they are paraplegic and cannot walk, the disability is because the environment is not wheelchair accessible. They suggest that if physical barriers were removed many more disabled people could have freedom of movement and equal opportunities to use their abilities.• Staff Attitudes There is a need for training in disability awareness. This applies even, or perhaps especially, to those who work in hospitals or social services. Studies suggest that attitudes to disability are no better in the health services than in the general population. There is also a suggestion (Kahtan et al., 1994) that unless medical students are specifically taught about disability, their attitudes will worsen, not improve, over the time of training (Horden, 1994). Emotions such as pity, disgust, rejection and even fear are sometimes displayed by professionals, and it is necessary to be aware of these primary responses. Disability awareness training can help to produce a better response. Our own experience of meeting or working with disabled people will modify and develop our perception of attitudes and needs. While many accept that a person with visual impairment may use Braille or be accompanied by a guide dog, fewer are tolerant of, or willing to adapt to, those with hearing difficulties, speech defects or who have to use a communication aid. In part, this may be due to associated factors; it requires great time and effort to communicate with a profoundly dysarthic patient and eye contact may be lost when using a communication aid. The cues coming back from a disabled person may be distorted, few or absent. Pentland et al.(1987) found that physiotherapists unconsciously smiled less and gave less time to patients with Parkinson’s and thought this was probably due to the immobile face and lack of response. The relationship between the professional worker and the patient should ideally be a partnership in which the worker provides information and options and the disabled person agrees the goals and plan of action for treatment. If the professional is constantly seeking to control and direct the individual, it suggests that the views of the disabled are not being heeded.
Impairment. Disability and Handicap• Differences in Attitudes and Reactions by Disabled People Within the disabled population there will be those who passively accept their limitations, those who refuse to acknowledge the difficulties and those who feel the limitations are caused by ‘society’. The following –punishment, grief, a challenge-are just a few examples of how disabled people perceive disability.• Is it a punishment? Some newly disabled people, and parents of disabled babies, often express concern that disability is a form of punishment for some imagined wrong doing. One lady who had suffered a stroke felt it was her punishment for not having afforded and placed a headstone on her husband’s grave. While counseling may be available to help work through such negative feelings, this idea of disability needs to be challenged.• Grief Grief is a common reaction to disability. Many disabled people talk of adjusting to life with a disability rather than accepting it. It is important that professionals and carers can acknowledge their grief and allow time for the person to work through their feelings. This is a continual process, reflecting the changes in a person’s situation. Such changes may be caused by deteriorating condition with increased loss of function or by the gradual realization of loss. This may well be happening during the process of rehabilitation and returning home.
Impairment. Disability and Handicap• Attitudes expressed by carers Family members and other unpaid carers are relied upon heavily to support disabled people in the community. Financial benefits may be paid to carers, but these are often not comparable with the lost salary or the hours of caring involved. Some disabling conditions may cause changes in the person and in turn affect their relationships. This may include personality changes or problems such as incontinence or memory impairments. Carers can feel trapped looking after someone who is no longer the same and may not be as likeable. The dependency of the disabled person and the associated responsibility of caring may be irksome to the individual and the carer. There are also some carers who enjoy their role and prevent the disabled person from achieving their potential. The growth in carers’ support groups and the introduction of legislation is to ensure that needs of carers are specifically addressed gives recognition to the needs and concerns of those involved in the care of a disabled person. Some may argue that the growth in concern about carers emphasizes the negative aspects about disability and able-bodied people.
Impairment. Disability and Handicap Mechanisms of Coping with Handicap• Having Children• Having a baby represents a considerable investment in effort and money, as well as in the physical resources of the mother and the psychological resources of both parents.• LOSS AND GRIEF What is lost is the child who would have existed and who could have realized those expectations for the parents. However, unlike death, what is gained is a child who might achieve some of them, but at various degrees of extra cost of effort and resource.• Shock The first stage of response to bad news is shock, similar to the effects of a severe fright. It numbs the senses, impairs recognition of the scale of the news, and produces apparently inappropriate social responses. Parents are in shock as they receive bad news and it is for this reason that they need to be supported by each other as they receive it so that information can be further discussed equally between them, and what they believe they heard can be confirmed or corrected by each other.
Impairment. Disability and Handicap Mechanisms of Coping with Handicap• Denial Denial emerges from the numbness of shock but is a longer continuing of an inability to believe the news, a failure of acceptance that it is so.• Anger There will be a variety of targets of rage. Many can rail against unkind tricks of nature or of God, but others will need nearer and more realistic targets. Being angry provides an activity which diverts people from thinking too much about themselves.• Depression As anger recedes there arises the opportunity to consider the self, one’s potential share in the blame, the sense of helplessness and hopelessness about the future. Self-blame can reach delusional proportions.• Guilt Guilt arises from the facts, and the mental states of grief. Unacceptable reactions to the fact of the handicapped child- murderous feelings, wishing at least the child was dead or would soon die, feeling like injuring the child- are not all defended against, and parents feel guilty in consequence. Some feel generally guilty that their seed is somehow tainted and they have passed on a bad part of themselves.
Impairment. Disability and Handicap Self-image and self-esteemThe extent to which disability disrupts a person’s self-image, and thereby self-esteem, is probably the most important factor in determining how the person copeswith disability. Each person has a view of him/herself, with perceptions of his/herphysical and cognitive attributes, character, achievements and relationships withothers. By self-image is meant the person’s evaluation of him/herself, based onthese perceptions, on a multitude of dimensions. These dimensions can beconsidered as descriptive bipolar scales, such as ‘good – bad’, ‘strong – weak’,‘lucky – unlucky’. By self-esteem is meant that part of his/her evaluation that isbased on the dimensions that he/she considers particularly important, i.e. on thosedimensions that relate to a sense of intrinsic worth. Which dimension a personconsiders to be important will vary from individual to individual, being a reflection ofthe many influences and experiences that over the years have helped shape theperson’s personality. However, common ones are ‘attractive – unattractive’, ‘strong– weak’, ‘clever – stupid’, ‘masculine – feminine’, ‘competent – incompetent’,‘interesting – dull’, ‘sexually desirable – sexually undesirable’, ‘independent –dependent’, ‘important – insignificant’ and ‘successful – unsuccessful’.
Impairment. Disability and HandicapErving Goffman, noted sociologist, defined Stigma as a special kind of gapbetween virtual social identity and actual social identity:Society establishes the means of categorizing persons and the complement of attributes feltto be ordinary and natural for members of each of these categories.When a stranger comes into our presence, then, first appearances are likely to enable us toanticipate his category and attributes, his “social identity” … We lean on these anticipationsthat we have, transforming them into normative expectations, into righteously presenteddemands. … It is [when an active question arises as to whether these demands will be filled]that we are likely to realize that all along we had been making certain assumptions as towhat the individual before us ought to be. [These assumed demands and the character weimpute to the individual will be called] virtual social identity. The category and attributes hecould in fact be proved to process will be called his actual social identity.The Origin of StigmaStigma is a Greek word that in its origins referred to a kind of tattoo mark that was cut orburned into the skin of criminals, slaves, or traitors in order to visibly identify them asblemished or morally polluted persons. These individuals were to be avoided or to beshunned, particularly in public places (Healthline Network Inc., 2007).
Impairment. Disability and HandicapThe attitude of health care professionals can have a direct influence on aspects of care. When health careprofessionals interact with persons with disabilities, attitudes and feelings are reflected in the interaction. Ingeneral, the attitudes of health care professionals can influence how patients with disabilities feel aboutthemselves and their progression with rehabilitation. It is well known that health professionals who work withpersons with disabilities significantly affect the patient’s treatment and rehabilitation potential. Negative attitudesof health care professionals can inhibit patient adaptation and acceptance of their disability and limit thedevelopment of positive staff- concept, irrespective of the limitation of disability. In contrast, a positive attitudeincreases patients’ motivation to recover, adapt to and accept toward disabilities (1, 2,3,4,5). Roush (1) reportedthat negative attitudes towards people with disabilities are common in society, but are not directly voiced. Theyare expressed in different ways and serve as barriers to the full realization of human potential. It has been agreedthat health care professionals hold attitudes toward people with disabilities that are similar to those of society as awhole, and they may be actual perpetuators of this limiting practice (1). This conclusion is at variance with thefindings reported by Paris (2) who reported that health-care professionals and medical students, similarly, hadpositive attitudes toward individuals with physical disabilities. Moreover, Gething (3) found that Australian nursesand nursing students’ attitudes are more positive than those of the general population and that nursing educationstrategies are more effective in promoting positive attitudes. Also, Brilliant et. Al. (4) found that nursing faculty,fresh nursing students, graduating nursing students and registered nurses had positive attitudes toward peoplewith disabilities. However, the faculty held the least positive attitude, followed closely by graduating nursingstudents. Registered nurses had more positive attitudes than fresh student nurses, graduating nurses and nursingfaculty. On the contrary, Biley (6) reported that nurses had negative attitudes and a general lack of awareness ofthe needs of the people with physical disabilities. He concluded that there is a need for increased awarenessamong nurses, of the needs of people with disability.
Impairment. Disability and HandicapThis variation in attitudes found in these studies may indicate that practicesites, age, clinical experience, educational level, belief and cultural aspectsmay affect the attitudes of health care professionals. In other studies, rehabilitation professionals including 150 rehabilitationnurses, 57 occupational therapists, and 43 physical therapists in southeastTexas, reported to have positive attitudes toward people with disabilities (5).In Fact, occupational therapists had significantly higher scores than therehabilitation nurses and physical therapists. Attitude scores amongrehabilitation professionals have been reported to not be significantlyaffected by practice setting, age, educational level, and duration ofexperience (5). Such positive attitudes among rehabilitation professionalswere also documented by Benham (3), who investigated the attitudes of 619occupational therapists.