Enabling E-Democracy - Disability, Social Exclusion and ICT
Problems of Definition
DEFINITIONS OF DISABILITY
1.1. There is no satisfactory definition of disability. The World Health Organisation defines disability as "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, particularly in social or occupational settings" (WHO 1993). Disability in general may be thought of as the gap between what a person can do and what a person needs or wants to do. Occupational disability is the difference between what a person can do as the result of an impairment and what a particular job demands (Walker, J.H.). United Kingdom legislation has tended to define the term functionally, i.e. the National Assistance Act, (UK Parliament, 1948) describes disability as:
"a physical or mental impairment which has a substantial and long-term adverse effect on a person's ability to carry out normal day-to-day activities".
For a disability to be classified as long-term, it must have lasted, or be expected to last, for at least a year. This was useful to a limited degree when the majority of work was manual; it provided a rough and ready rule which could be applied for the purposes both of checking employer compliance with disability employment quotas and, conversely, for the payment of a variety of disability benefits both for those who could or could not work. As the recent debate over Incapacity Benefit has clearly shown, to be disabled in one area of functionality does not automatically mean total inability to work. A person who has chronic lower back pain may no longer be capable of driving a heavy truck for a living but this does not prevent him acquiring and applying information and communications technology (ICT) skills. As Prof. U. Bleidick (1995) says, a disability is a complex process of causes, effects, direct influences, individual circumstances and social consequences which can be hard to define. In order to compensate for disability-related disadvantages and to manage the provision of support, rights and services for disabled people are governed by various laws, each requiring a definition of disability.
This includes, for example, social legislation, medical and occupational rehabilitation, special needs support in schools and the rights of severely disabled people. Disability in the legal sense must be officially determined in each individual case. Thus, the traditional functional definitions are much more difficult to apply.
1.2. The situation is complicated by a tendency to try to arrive at definitions of disability based on epidemiology. This tends to encompass a larger group than that covered by functional definitions because it comprehends a number of people with mild forms of chronic disability, so that the likelihood is that all those in a functional definition will be included in an epidemiological definition but not vice versa.
People that suffer lyme's disease or lupus eryhematosis1, for instance, fall into the category of systemic disabilities but they might not be included in the functional definition of disability as their symptoms may not be incorporated in the current demographics in which the definition of disability is based.
1.3. It should also be noted in passing that a wide variety of organisations from civil society apply their own definitions of disability in order to establish criteria for service provision which meet their objectives set out in their governing instruments and approved by the Charity Commission. Thus, for example, the Royal National Institute for the Blind (RNIB) provides a variety of services for people whether or not they have completed the formal Registration procedure for Blindness or Partial Sight and various organisations with objectives which include the term "Blind" provide documents in modified print to people who might well have vision better than the most liberal definition of "Partial Sight".
DEFINITIONS OF ICT EXCLUSION
1.4. It is common practice to treat ICT exclusion as a symptom of social exclusion. This is because the main cause of ICT exclusion during the 1980s and 1990s was economic. Obviously, people who could not afford to buy hardware, operating systems, software and telecommunications services were ICT excluded, as were people with some forms of severe functional disability. With the digital revitalisation of the television and the telephone and the steady fall in real terms in the cost of telecommunications, the economic component of ICT exclusion is becoming ever less significant. That is not to say that there will not be a 'hard core' of economically excluded people but this is likely to be very small and deliberately self-excluding.
1.5. A cursory examination of ICT exclusion and definitions of disability makes these two major factors immediately obvious:
- first, there are many people with extremely severe physical disabilities who are in no way ICT excluded e.g. wheelchair users with normally functioning upper limbs; people affected by paraplegia experience a paralysis of the lower extremities and the lower trunk but they have full movement of arms and hands;
- secondly, there are many people who are not classified as "Disabled" for the purposes of benefits payments, epidemiologically or in terms of civil society service provision, and who would not self classify as "disabled" who, nonetheless, have such a degree of functional limitation that they cannot effectively use ICT systems e.g. people with chronic arthritis, short attention spans; people with multiple sclerosis (MS) or learning difficulties .
1.6. Obviously, the design of hardware, operating systems, software and the information itself all have an effect on the number of people who can access a system and its information (e.g. the more adjustable the print the fewer people will be excluded because of low vision) and we will deal with this subject in detail in Section 2. But no matter how a system is designed there will still be those who will have such functional limitations that they will not be able to use it for the purpose for which it was designed or for the function designated by an 'author'. If we are to make any sense of this concept we must match a set of system functions with the functionality of the individual and see where there are significant deficits (Petrie & Carey, 1999). This leads us to a set of definitions of functional limitation with respect to ICTs which are by no means co-terminal with definitions of "Disability" or "Social exclusion".
Indeed, one of the central problems in looking at disability and ICT exclusion is a lack of a robust demographics of ICT functional limitation. You cannot, as we will point out in Section 2., design an optimally inclusive system if you do not know how many of what category of functional limitation needs to be included.
FUNCTIONAL LIMITATIONS AND ICT
1.7. Those generally categorised as "Disabled" and/or those who have some functional limitation which excludes them from effective use of ICT systems can be divided into four broad categories:
- Learning Difficulties
- Physical Limitation
- Hearing Impairment
- Visual Impairment.
1.8. Although it is not possible to make completely authoritative statements on the four categories of functional limitation in 1.7. some useful generalisations may be made:
- The four factors are listed in descending order of incidence and prevalence
- With some syndrome exceptions, the milder the limitation the greater the number of sufferers
- In spite of the paediatric public paradigm, with some syndrome exceptions the percentage of people in all four categories rises with age. Thus, although there are children with severe manifestations in all four categories, declining cognitive skills, physical facility, hearing and vision are all age-related phenomena with a much higher prevalence and incidence than similar conditions in children
- There are some children (e.g. those born of mothers who suffered from German Measles (Rubella) during pregnancy) who have multiple disabilities; likewise, age-related functional limitation may be multiple.
1.9. It is extremely difficult to quantify the number of people suffering from some form of cognitive problem which affects their ICT effectiveness because a great many cases (almost certainly the majority) do not lead to any form of disability classification.
The clearest example of a cognitive problem relates to those who simply use very basic vocabulary and syntax. How far this is a result of poor education and training and alienation from those processes and how far the condition is congenital or acquired as the result of illness is difficult to resolve. This is where "Disability" and classically defined "Social Exclusion" become entangled. Clearly, improved education and training and methods for reducing alienation are vital in improving vocabulary and syntax but, in the meantime, there are millions of people in the UK who will not be able to read documents required for participative citizenship. Macgillivray and Boyle (2001) quote 25% as the figure for those who "Cannot understand Government documents" but with an OECD (2000) figure for illiteracy in the UK of between 16.6 and 21%, depending on the functional definition applied, the figure is likely to be far higher than 25% for such documents as Green and White Papers.
Less obviously, there are many people who are not good at unassisted interaction; they can answer questions if the questioner interprets them but not if they are simply given a form on paper or a screen. Further, there is a substantial portion of the population (reported in some places at least 25%) who have poor navigating skills even at the level of left/right; the number is likely to be higher for those who cannot navigate in 3-dimensional, disorganised hyperspace.
Finally, there are those who are simply technophobic. Whether some of these limitations are mild manifestations of "Disability", however defined, or arise from "Social" causes may be a matter of academic fascination but its impact on effective citizenship is the same.
1.10. Physical limitation with systems is in many ways the most obvious but, again, quantifying it is difficult. Some limitations, such as the inability to manipulate a standard mouse which is bundled with a system, can be easily overcome with simple hardware modifications, in this case a larger mouse. Some manual dexterity problems (such as shaking hands, weak grip, or simple clumsiness) can be overcome through the use of voice-in technology which almost completely cuts out the use of the hands.
Voice-in technology and systems which respond to gesture are steadily improving but this still leaves a core of seriously physically limited people who will require special systems features which may not be classified as "optimal" (Carey 2000).
1.11. In many ways the benefits to hearing impaired people of ICT have been the most obvious, through such services as Typetalk and, more recently, through the use of e-mail and telephone messaging. The increasing use of audio on the Internet will, however, call for complementary information provision, such as full Hansard text as an alternative to summary subtitles on 'clips' of Parliamentarians. (Voice in technology will allow text to be created by speakers as they speak).
1.12. Approximately 95% of those classified as visually impaired use some form of print and so they can be accommodated through adjustable print size and font. Many totally blind people are comfortable with synthesised speech which can be produced from text files but the biggest threat to access is from the increased use of static graphics and moving pictures. Many Internet sites are inaccessible because they are graphics-based or contain design features which cannot be interpreted by synthetic speech devices.