disability

disability Which one of us is not disabled or ‘challenged’ in some aspect of our physical or mental capacity? The spectrum of human ability is wide, and it is on their capabilities that people with a disability would like society to focus.

Definitions

There is no single commonly-accepted, straightforward definition of disability. The subject is complex and controversial. Three of the main sources for definitions of disability are the medical, social, and legal models. The medical model uses the World Health Organisation (WHO) definition. The WHO (1980) outlines the relationships between impairment, disability, and handicap. The simplified working definition is called the International Classification of Impairments, Disabilities, and Handicaps (ICIDH). It uses these terms to describe the inter-relationship, aiming to achieve consistency in the meaning and use of the labels. The focus is on functional difficulties.
A disease, disorder or injury produces an impairment causing a change to ordinary functioning. Impairment refers to failure at the level of organs or systems of the body. This means loss or abnormality of psychological, physiological or anatomical structure or function. A disability refers to the resulting reduction or loss of ability to perform an activity in the manner considered normal for a human being e.g. climbing stairs or manipulating a keyboard. A handicap is a social disadvantage resulting from an impairment or disability which limits or prevents the fulfillment of a normal role.

This medical model demonstrates an interplay of factors acknowledging that grey areas requiring interpretation are acceptable within the definition. For purposes of assessment, quite often what matters is not the medical condition but the accompanying decrease or loss of function resulting from a disability.

The social model separates a person's specific impairment from his or her disability. In this approach, ‘a person with an impairment becomes ‘disabled’ when the organization of the society in which they live excludes them from mainstream activities’ (Employers' Forum on Disability). The Royal College of Physicians stresses the need to consider disability in the context of ‘a disabled person's encounter with daily living, the environment and society, not only in specific circumstances, but in the whole of that experience’. This then can meet the needs of individual differences and concentrate on the external, reversible factors. Clarifying ‘barrier-free’ policies for everyone rather than ‘special case’ policies for people with labels creates a more dynamic approach.

The third model incorporates the legal aspect and includes the rights of the individual. The current UK Disability Discrimination Act (DDA), 1995, was introduced to progress individuals beyond the limitations of the 1944 register for disabled people and the quota system. The Act states that a person has a disability for the purposes of this Act if he has: ‘a physical or mental impairment which has a substantial and long term adverse effect on his ability to carry out normal day to day activities.’ The purpose of this legislation is to protect individuals with a disability which makes it difficult for them to carry out ordinary, routine, day to day activities. The disability can cover physical, sensory, or mental faculties. It must be substantial and last or be expected to last for at least one year. The Act requires employers with 15 employees or more to make ‘reasonable provision’ for disabled workers.

Interpretation

The definitions above utilize the words ‘normal’ and ‘reasonable’ which are of course wide open to interpretation, escalating to contentious and litigious argument whenever the financial stakes are high. This frequently results in queries around settlement of legal, industrial, discriminatory, or insurance claims, assessment for medical aid, supply of high-tech equipment, provision of expensive prostheses, and access to special facilities, including education. Allocation of these increasingly expensive, sophisticated, and necessarily limited resources always hinges on the assessment of the degree of disability. Thus, whatever the formal definition, it is crucial to relate the disability to the level of purposeful functioning. For example, a short-sighted person might meet one test for disability, whilst with corrective lenses few would regard his myopia as a disability. Yet, if the myopia was severe or seriously progressive, no one would argue that this visual problem or partial sight did not constitute a disability, a handicap, and an impairment. A significant disability like blindness does not prevent a senior politician from performing a leading role, although he has to find creative ways and support to overcome the functional handicaps of his impairment. A relatively minor impairment, the loss of a finger to a violinist or of a thumb to a labourer, would be both a major disability and an occupational handicap — although not so to a majority of lecturers or teachers. Many people manage life well with asthma, but for a plasterer this would signal a major life and job change.

The definitions given generally refer both to physical disabilities and to mental health problems. Care is needed with respect to the latter, since many people appear ‘normal’ and also cope well much of the time, although in practice their day to day functioning can be seriously affected. Mental illness is therefore at risk of going undetected, with the individual consequently deprived of the necessary support until significant inappropriate behaviour is displayed. The reasons are a combination of the invisible nature of the disability, the not infrequent lack of a formal diagnosis, and the poor level of awareness of mental health issues amongst the healthy population.

Disabled people do not form a static or easily-identified group distinct from the rest of society. Some impairments improve with time while others are exacerbated. There are disabilities that are invisible, like diabetes, dyslexia, hearing loss, and mental illness. People not born with impairments can acquire them through accident or illness, and others born with them may gradually deteriorate.

What becomes important is not the label, though in some cases like dyslexia (specific learning difficulties) the label is important in gaining access to resources, but the assessment of loss of function in the context of employment and of day to day living.

Assessment

When it comes to assessment for resources and state benefits, few of the disabled person's rights depend on what the condition is called. Rather, the allocation of the benefit or service depends on the effect of the disability on day to day life. Someone with a severe facial disfigurement, not deliberately acquired, may not have a named disability but can suffer severe embarrassment and social stigma to such an extent that there is a long-term adverse effect and considerable handicap. They would be defined as a disabled person under the DDA.

Within health assessments, it is common to distinguish between two levels of activities of daily living (ADL): basic ADL are those that are essential for all aspects of self care; instrumental ADL are those activities such as shopping, housekeeping, and using private or public transport that are necessary for someone to maintain a level of independent living, especially in the absence of a carer.

The purpose for which the results are to be used is a necessary prerequisite in making an assessment. If, for example, the information is for inclusion in a survey this would necessarily be less stringent than for access to a facility or resource.

Objective assessments attempt to measure disability in a standardized form to provide information for individual health care, educational access, job requirements, and legal rights. Health professionals may use a variety of structured approaches from screening questionnaires to diagnostic tools involving physical tests. Psychometric tests can also be used for assessments. They have to be reliable and valid and can be used to measure ability, aptitude, reasoning, and aspects of personality.

It is appropriate to allow for self- as well as observer-based assessments. The person most likely to know the constraints and possibilities of their condition is the individual, who may also be one of the best sources for describing creative solutions to get around the difficulties. Self-assessment together with objectivity from health or support workers is likely to provide a realistic picture of limitations and potential.

In general, assessment gives an indication of need, can help with prediction of problems, and can give measures of outcome and output. Any system of assessment needs to be reliable, valid, sensitive to change, acceptable, relevant, realistic, and practical to use.

Perceptions

There is a strong need to combat bias and to dispel preconceptions in any review of disability. The disabled want the focus of their social relationships and medical interventions to be on their capabilities as far as that is reasonably possible. They wish to be accepted within society on an equal footing with equal rights. Typical situations include the doctor who addresses the carer rather than the individual, implying a perceived inability to communicate. Or, an employer may assume that disability will be an insuperable burden, dismissing the potential and commitment of the individual, in ignorance of the practical experience that disabled workers are frequently highly motivated, effective workers with good attendance records. Disabilities obviously can impose restrictions; but the goal many want as a right is unprejudiced, unfettered, and equal opportunity to demonstrate their creativity and their capability to function in day to day life and work.

Information

For the newly injured or diagnosed access to good information is crucial to dealing successfully with the trauma. The obvious sources are the institutional ones (hospitals, social services, and relevant government bodies). At the next level are the organizations usually related to particular conditions or lobby groups. Frequently, informal support groups have developed precisely because there may be limited practical support and information available. These can usually be accessed via helplines or the media. Other sources include:(i) the Disability Rights Handbook, updated annually, published by Disability Alliance Education and Research Association;(ii) the Internet;(iii) the local library;(iv) special Olympics and sporting organizations;(v) the DDA information line;(vi) Ability, ‘The computer magazine about disability issues’;(vii) The Employers' Forum on Disability.

Marian Borde

See also blindness; deafness; paralysis.