“What’s in a Name” - A Discussion Paper on Disability Terminology
Written by Richard Llewellyn when he was Disability Adviser to the Premier, John Bannon from 1984-1991
“Sticks and stones may break my bones, words will never hurt me” : Old Nursery Rhyme
This paper was written in an effort to show the important consequences which words can have for individuals. It also introduces simple day to day definitions which are recommended for general use in government.
1. Background
The disability area is strewn with descriptive words subject to definition. Justice Bright in the “Law & Persons with Handicaps” cited sixty different descriptive phrases from South Australian legislation. He found that most phrases used were interchangeable and further, many were anachronistic or had derogatory connotations. Examples included — lunatic, moron, idiocy, infirm, incurable, incapacitated, imbecile, invalid, diseased, helpless, mental defect. The debate on what to call people with disabilities is for some an argument of semantics. But are words when used as labels in fact harmless? Many believe that the psychological effects of labelling people as ‘invalids’ etc. is as damaging to egos as sticks and stones are to bones.
Further, the principal use by Governments of definitions and descriptive terms is in determining eligibility criteria for various services or resources. For this reason definitions should be precise, consistent, easily understood and non—demeaning. During planning for the 1981 International Year of Disabled Persons (I.Y.D.P.), considerable debate on terminology took place within the United Nations (U.N.) secretariats. A number of proposals for the Year’s title were rejected, including the word ‘handicapped’, which was then used extensively.
The selected title ‘International Year of Disabled Persons’ described the attitude and action which the U.N. hoped would follow, i.e. a recognition of the individuality or people with disabilities. It expressed confidence in the ability of people with a disability to voice their own concerns and administer their own affairs. If the title had been “The International Year for the Disabled” for instance, action would have centred on doing things for the disabled, an amorphous group. Sadly, few governments shared the U.N. concern or understanding in planning for 1981; most appointed able-bodied people to organise and administer I.Y.D.P. committees and activities.
However, South Australia led the way in Australia by appointing an I.Y.D.P. Advisory committee which consisted of people with different disabilities and by employing predominantly disabled people in its I.Y.D.P. secretariat. The consensus at the end of 1981 was that South Australia had achieved more telling results than other States.
2. Definitions
The medical profession has traditionally been the principal decision-maker in disability matters. The language used in describing disability therefore has largely reflected medical interests and orientation. In recent years the most common descriptive words have been ‘impairment, disability and handicap’, using definitions for these words as adopted by the World Health Organisation (W.H.O.).
World Health Organisation definitions have a major flaw as they imply a consequential link between impairment and disability; there is not necessarily a link between these terms and handicap. ‘Handicap’ is a general, descriptive term which may be applied to almost any disadvantageous situation.
For example, speaking only a foreign language in Australia is a handicap but it is neither a medical impairment nor a disability resulting from an impairment. Similarly, being unemployed is a handicap but for most people the reason for not having work (the handicap) is more likely to be due to the economic situation rather than any medical condition or disability.
The implied interchangeability and consequential linkage between impairment, disability and handicap in fact render the W.H.O. definitions ineffective tools for resource distribution, program evaluation and assessment of eligibility. For these reasons, ‘handicap’ should not be used as a definitional term for people but confined simply to its current general use of some barrier outside of people. ‘Disability’ on the other hand, is both a description and a fact, which is measurable against ‘normal’ human functioning. [See “Guide to the Evaluation of Physical Impairment” American Medical Association, 1971].
The question of responsibility is critical in devising acceptable definitions which have a clear, practical applicability. The World Health Organisation definitions perceive responsibility for impairment, disability and handicap as resting with the medical field. It is here argued that the medical field only has primary management responsibility for impairment; primary management responsibility for disability lies with the disabled person, and primary management responsibility for handicap or disadvantage lies with the community.
3. Proposed New Definitions
IMPAIRMENT - The anatomical loss of bodily or mental function resulting from a birth defect or medical condition.
DISABILITY - The measurable long term/permanent functional loss or limitation resulting from a medical impairment or birth defect.
HANDICAP - The social consequence caused by environmental or social conditions which prevent a person from achieving the maximum potential or participation they seek. The major disadvantage in adopting definitions which differ from those of the World Health Organisation is the universality of the latter.
The existence of a common professional language is important for clear communication. However, this difficulty should not be over-emphasised. The proposed definitions are simpler but not totally dissimilar from W.H.O.’s; moreover the major suggested change in the application of the definitions is the exclusion of the term ‘handicap’ from the field of intellectual and physical disability. The advantages of the proposed definitions are that they are clear, comprehensive and suitable for setting eligibility and program funding parameters. In addition, these definitions can help us avoid dependency building if we observe and maintain these boundaries of responsibility.
4. Recommendation
It is recommended that the descriptive phrases ‘people with disabilities’ or ‘persons with disabilities’ be used in all correspondence and reports.
