Volume 2 Issue 13 - July 01, 2004
What’s in a word?
DNIS examines the significance of our understanding of one simple word: Disability.
The Delhi High Court's judgment that Delhi University should provisionally accept a dyslexic student under the 3 per cent disability quota, hinged on the judge’s understanding of the terms 'dyslexia' and 'disability'. So what is disability? How is the word defined, interpreted, used and mis-used throughout the world?
Historically, disability was seen as the consequence of sin: a visitation of ills on the child for the parents' previous wrongdoing or as in the Hindu reincarnation belief, the price of wrongdoing committed in an earlier life. It must be stressed that such moralistic beliefs still hold sway in various sections of society in many parts of the world. Indeed in 1999, Glenn Hoddle was sacked as the England football coach, after he said he believed disabled people were born disabled as a punishment for sins committed in a past life.
Another common view of disability, often termed the medical model, says that it is a defect or sickness that needs to be cured. This definition is also called the rehabilitation model, which regards disability as something that needs fixing by a trained professional.
Later definitions are less concerned with the individual person than they are with the environment they live in. The World Bank's new Disabilities and Development website outlines the independent living or civil rights model. This firmly says that disability is a problem of society – its response to people with disabilities, its systems, laws, policies and relationship. The problem includes long-standing inequities, discrimination, prejudice, exclusion and devaluation.
It points to "a deeply ingrained disposition among the non-disabled to associate 'human variation' with 'human defects'." Segregation, consistent and widespread reports of discrimination, and unemployment are all part of the problems to be overcome. Solutions include non-violent confrontation, systems advocacy, civil rights legislation, litigation, and other political actions, which can be used to improve access to the economic, social, educational and environmental resources of society.
The most recent view of disability is the post-modern model. This is such a new idea that, according to the World Bank's Disability and Development website, it is still being defined. This model owes much to the emergence of the information age, with its technological advances that are helping to level the playing field for people with disabilities. The key challenge is to make the technology accessible to everyone, including people with disabilities.
This definition makes it clear that disability is a problem caused by society's economic policies and priorities, including the uneven distribution of resources, poverty and unemployment, together with widespread acceptance of the medical model. The fundamental problem of 'disability' is seen as being the lack of widespread acceptance of it as a legitimate cultural experience. Indicators of the problem, the website says, are: "uneven distribution of technology, adaptive equipment and supportive assistance". Contributing factors include the absence of positive media images and continued institutionalisation.
Suggested solutions include the acknowledgment of disability as an unemployment rather than rehabilitation issue, recognition of the universality of disability, an increase in access to technology and the removal of work disincentives. Success depends on legislation, community identification, leadership development, economic and market research and analysis.
Perhaps the latter two definitions can be summed up in a wider definition that is widely accepted by disabled people themselves: namely that disability is not a deficiency of a person, rather it is the norm that people are born with different physical/mental capacities; that disability is something caused by an intransigent society and an environment that fails to cater for all people. Therefore, the problem does not lie with the person who is disabled, but in the society that imposes the disability on that person.
Such definitions are however, more theoretical than practical. In order to legislate for disability, governments need to be very clear about who is or is not disabled. At first glance this may seem a simple question to answer, but in fact it is it is far from being straightforward.
In India, the 1995 Disability Act, Section 2(i) says disability means: "blindness, low vision, leprosy-cured, hearing impairment, locomotor disability, mental retardation, mental illness". A person with disability is defined as anyone "suffering from not less than 40 per cent of any disability as certified by a medical authority". This definition is still very limited. It does not include learning disabilities such as autism and dyslexia, or disabling illnesses such as haemophilia.
However even this is an advance on a previous definition given by the Planning Commission of India, which said a disabled person was anyone who was blind, deaf, had an orthopaedic disability, neurological disorder or was mentally retarded. This earlier definition included "any person who is unable to ensure himself/herself, wholly or partly, the necessities of a normal individual or social life including work, as a result of deficiency in his/her physical or mental capability".
So disabled people were, by definition, classed as being unable to (unfit for) work. That is clearly not the case, as can be seen by the example of one of the world’s greatest scientists Professor Steven Hawking, who is, surely by anyone's definition, clearly a disabled person.
Away from India, the World Health Organisation (WHO) manual sets out the following definition of disability: "A disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being." This is clearly a much more inclusive definition.
In the United Kingdom, the Disability Discrimination Act says a person is considered disabled if they have: "a mental or physical impairment" which has an "adverse effect on their ability to carry out normal day-to-day activities".
An adverse effect on "normal day-to-day activities" is further defined:
At least one of these areas must be badly affected:
- manual dexterity
- physical co-ordination
- ability to lift, carry or move everyday objects
- speech, hearing or eyesight
- memory or ability to concentrate, learn or understand
- understanding of the risk of physical danger.
In addition the adverse effect must be "substantial" and "long-term (meaning it has lasted for 12 months, or is likely to last for more than 12 months or for the rest of your life)".
So it can be seen that in the UK, people with long-term physical or mental impairments may be regarded as disabled even if they may recover from their "disability" at some time in the future. Such a definition allows the payment of disability allowances to people unable to work due to long-term illness.
This is in stark contrast to the situation in India, where Delhi University recently imposed an extra medical test for students applying under the 3 per cent disability quota to ensure that people with curable conditions did not sneak in to the college by fraudulent means.
The International Labour Organisation's Vocational Rehabilitation and Employment (Disabled Persons) Convention 1983, defines a disabled person as "an individual whose prospects of securing, retaining and advancing in suitable employment are substantially reduced as a result of a duly recognised physical or mental impairment".
In the United States of America, the City of San Antonio Disability Access Office advises its employees that: "People with disabilities are not conditions or diseases. They are individual human beings. For example, a person is not an epileptic but rather a person who has epilepsy. First and foremost they are people. Only secondarily do they have one or more disabling conditions. Hence, they prefer to be referred to in print or broadcast media as people with disabilities."
Universiti Sains Malaysia has been working hard to ensure its campus is fully accessible. In one document outlining its policy, it has included the aged and pregnant women as people with disability.
So it can be seen that there are as many definitions of disability as there are types of impairment. The language used to define disability therefore provides as clear an indication as is possible, of the attitude of the speaker or writer using it.
Perhaps this is the most important lesson to learn. As Italian disability expert Professor Andrea Canevaro writes, in his document Words That Make A Difference: "It’s very important not to confuse deficit, disability and handicap: the use of improper terms and linguistic confusion can be a way to increase handicap instead of reducing it." It is the responsibility of everyone, whether disabled or not, to use the language of empowerment when referring to people with disabilities and the situations they face. We should strive to ensure the language we use does not add to the handicaps already present in societies around the world.
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