Persons with Disability and Teleworking

Camilleri, Joseph M: 'Persons with Disability and Teleworking'. A presentation given at the Computer Society of Malta's Annual Seminar entitled: Flexible Working in an Information Society. Thursday, 11th August, 1996. Holiday Inn Crowne Plaza, Sliema. Malta.

Introduction

The rapid and unexpected changes brought about by the information technology and teleinformatics revolution have, in many ways, profoundly effected the lives of many people in developed countries. We know now that the potential impact of information technology on an individual's life is always immense; sometimes beneficial, at other times down-right destructive.

Like other human beings, persons with disability are also profoundly effected by technological changes in society. It is true to say that new technology often impacts more dramatically on the lives of persons with disability, since of its very nature disability tends to make the individual more dependent on technology to offset physical, mental and sensorial limitations. Thus, we can be in no doubt that information technology and teleinformatics and the way it has effected human interaction will begin to assume increasing importance as central tools by which persons with disability will seek ensure equal opportunities in education, employment and perhaps even in leisure activities.

Information technology has opened new and unimagined opportunities for the employment of persons with disability. Through the use of speech-synthesisers and on-line services, blind people have access to a limitless supply of information and are not restricted to material in Braille format or dependence on sighted readers. Deaf persons use text-telephone, or communicate by e-mail in such a way that their disability becomes an irrelevance. Persons with mental disability can make use of computer-based learning packages which allow them to learn at their own rate, at a time most suitable to themselves and free of the stresses of group-work.

People with a mobility impairment have a powerful tool which offsets physical limitations. Fax/ modems allow one to correspond, bank and shop remotely without the need to depend on non-disabled assistants. Infra-red pointing devices allow profoundly paralysed individuals to carry out complex tasks, such as desktop publishing, or accounting. Speech-to-text software has given a voice back to people who experience problems with communications, such as some individuals with cerebral palsy.

Finally, by using information technology and teleinformatics, parents and carers of persons with disability can have direct access to useful and intelligible information about the condition itself, self-help groups, advocacy services, assistive apparata, legislative provision, educational and employment opportunities. Whereas in the past, parents and carers always at the mercy of professionals, many of whom put the success of their career before all else, and doled out information accordingly, today parents and carers are free to inform themselves fully and to make responsible, informed choices for their disabled offspring, themselves and the rest of the family.

Disabled Persons?

The World Health Organisation calculates that, as a rough estimate, 10% of the population of any given country will have a disability of some form and severity or another. With a total population of approximately 360,000 people, this would result in a total of about 36,000 persons with disability in Malta and Gozo. These people vary in character, age, social and education background, financial status and, of course, disability. Naturally, this means that their needs are also different and that it is thus futile to generalise about 'the disabled', as if we were talking about a homogenous group of people.

Just as many insensitive, non-disabled persons tend to lump disabled persons into one vague, ill-defined group, many people use the words 'impairment', 'disability' and 'handicap' interchangeably, consciously, or unconsciously, oblivious to the fact that the United Nations and the World Health Organisation have sought to establish definitions which enable us to speak with less prejudice and more precision.

Briefly then, the following are definition of impairment disability and handicap taken from the World Programme of Action Concerning Disabled Persons (World Programme) (United Nations, April 1988):

· Impairment
'Any loss or abnormality of psychological, physiological, or anatomical structure or function.' [3]
· Disability
'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.' [3]
· Handicap
'A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfilment of a role that is normal, depending on age, sex, social and cultural factors, for that individual.' (World Programme, 1988: 3)

'While impairment and disability are pre-eminently medical conditions, handicap is largely a social condition which is forced on one by external circumstances.' Clearly, then these definitions look upon handicap, not as individual-oriented, but as a 'function of the relationship between disabled persons and their environment. It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens.' (World Programme, 1988: 3)

Individual Solutions and 'Choices'

Generalisations about disabled persons, too often lead to generalised 'one size fits all' solutions to central issues, such as: education, employment, leisure. Just like everyone else, persons with disability want to have equal opportunities. We want to be able to make the same choices that are open to the majority of non-disabled persons. For instance, we want to be able to choose where, when and how. To be in control and not controlled.

Target Groups

We have said that persons with disability are different and have different needs. With this mind, it is possible to identify a target group for whom teleworking could be a viable employment option. Some examples of people with disability who may benefit from teleworking, include:

· Persons with a very severe physical disability, who cannot leave home. For example, individuals who have severe spinal injury.
· Persons who have a chronic disease and who experience periodical setbacks. For example, persons with very severe asthma, or rheumatoid arthritis.
· Persons with a mild to medium mental disability, who may use teleworking to build up confidence prior to finding a job on the open market.
· Carers of persons with disability, whose commitments may prevent them from leaving the home for extensive periods of time.


Benefits and constraints

Some persons with disability, as mentioned earlier, may be attracted to the idea of teleworking primarily, because it is a system which offers flexible working hours. Another attraction is that tasks may be organised to suit one's own work pace, something that is rarely possible when one works in a highly structured and demanding atmosphere of an office, or on the production line. In the case of people for whom it is desirable to have a familiar and safe working environment, such as people with a chronic and severe illness, or people with mental disability or a mental illness, who may be undergoing training in order to make a gradual entry into open employment, teleworking can provide a sheltered atmosphere, where assistance is ready at hand an atmosphere free of destructive criticism, bullying or even 'back-stabbing'. In short, for many people teleworking means 'I am in control' and this can be beneficial to both the individual's productivity and their personal development.

There is no disputing the fact that teleworking can offer distinct advantages as an employment option for many people with disabilities, however, as with all 'schemes', it has its limitations. Therefore, it is important to look at the real and perceived disadvantages of teleworking as an employment option for persons with disability in order form a realistic picture of its future potential.

One of the most widespread problems which stem as a direct, or indirect, result of disability is a sense of isolation and the tendency of the individual to withdraw from human contact. In order to counteract this attitude and the parallel attitude on the part of many non-disabled persons to ostracise and ignore disabled persons, it is essential that all our endeavours have integration into the mainstream as an ultimate aim. Clearly, with telework there is a distinct danger that isolation will be accentuated, rather than minimised. Without the encouragement, support and distraction of colleagues, the disabled teleworker may experience a lack of motivation and lack of motivation. Since most of the individual's contact is with a remote co-ordinator the individual may also have an increasing sense that they are being 'controlled'.

It is vital therefore to establish frequent and mutually fulfilling human contact between teleworkers. Personally, I feel that tele-centres as opposed to working from home are would be the preferred choice of most persons with disability who decide to work remotely. In this way, the individual has the routine schedule and human inter-action of a regular job, but within a more manageable work environment and with the opportunity of working from home in an 'emergency'.

Persons with disability in Malta: employment options

Before giving a few alternatives of how such tele-centres may be set up in the local context, I will outline some of the employment options open to persons with disability in Malta. Open employment remains the preferred option of all persons with disability and it is an option which should only be put aside under very serious circumstance. The vast majority of persons with disability, whether they have a sensorial, mental, or physical impairment, are able and should be actively encouraged to seek employment on the open market.

Another option is the setting up of profit-making co-operatives. Here again, the ultimate goal is integration and therefore it is essential that such enterprises have a good ratio of disabled to non-disabled workers ideally, the mix should be 50-50. It is not inconceivable that in the future, some non-government organisations of persons with disability may seek to market their members' skills through such co-operative. Given, that information technology and teleinformatics are areas particularly suited to the abilities of persons with disability, such co-operatives may very well be based on some form of tele-working.

For a long time, and in many developed countries, sheltered workshops were seen as a solution to the needs of persons with severe mental disability and individuals who exhibit challenging behaviour. While, on a purely superficial level, these workshops have created a simulacrum of full employment, most have signally failed to develop social and marketable skills in the trainees who frequent them. Their role in the future may be split in two. On the one hand, some sheltered workshops may indeed provide a genuine employment option to disabled individuals who with the right amount of support and supervision are capable of work. On the other hand, a number of such workshops may tend to focus more on providing resource services aimed at implementing an Individual Development Programme for the person with disability, rather than maintaining the illusion of profitable employment. I admit that I cannot see a clear role for tele-working for sheltered workshops in the present scenario.

Home employment, as I have indicated earlier should be a means to an end (full and open employment) rather than an end in itself. Working from home on a regular, long-term basis should only be seriously considered if the person with disability has exhausted all other options. However, as a temporary measure, working from home could be beneficial in that it could, inter alia, form part of a rehabilitation programme, improve confidence and self-esteem and provide the individual with a useful source of income.

Setting up a teleworking scheme

In a climate where the focus is on a Welfare Society, rather than a Welfare State, the present Government is increasingly prepared to enter into partnerships with private industry and the voluntary sector in order to provide services which are under-developed or completely lacking. In order to provide such services it is essential to invest (sometimes heavily) in financial, technical and human resources. It is almost impossible for one group, to a certain extent even government, to provide all three effectively and that is why partnerships are the desirable means of creating such a new service.

I believe that it is possible for small non-government organisations (NGOs), such as, for example, the Computer Society of Malta, to embark upon a teleworking project with itself as the main service provider, providing that the project has the support of other partners. For example, a local council may identify telework and IT training as a priority in its area and would therefore provide premises, while giving the scheme maximum exposure in its newsletters and other information services. The business sector may choose to sponsor the project, either as a one-off or on a continuous basis; this may be done through the provision of hardware, software, or by providing favourable prices for the equipment needed. By submitting a Project Document to the NGO Selection Committee the project may be able to secure government 'start up' funds.

Creating working partnerships

A useful mix of partners could be made up of different organisations each of which would provide the project with its own unique contribution of goods, services and skills. The following is intended only as an example and is by no means exhaustive:

· the Employment & Training Corporation (ETC) is in an excellent position to provide individual assessments, IT training, make recommendations for placements of disabled persons and to provide the necessary support.
· Local Councils can be brought in to give tangible support to local initiatives and community empowerment schemes, such as tele-centres.
· Non-Government Organisations (NGOs) are ideal for providing peer support and for lobbying for awareness, new recruits, or more funding.
· the NGO Liaison Unit, as we have seen earlier may provide 'start up' funds on the strength of a Project Document, as well as proving useful by providing an on-going project proposal review and regular monitoring.
· the Servizz Ghajuniet Specjali, (SGhS) or Special Aid Fund, a service administered by the Kummissjoni Nazzjonali Persuni b'Diúabilità, may provide a needs assessment, practical advice and financial assistance to persons with disability who wish to purchase assistive apparata (including computers and peripherals).
· VAT exemptions on select items intended for the exclusive use of persons with disability are well worth investigating, since this is another method of reducing initial costs for the individual.
· Private Enterprise plays an important role in that suppliers may provide individuals and groups with favourable pricing, increased product choice and customer care.
· Industry may be brought in to provide, for example, one-off, or regular sponsorships to projects, bursaries for individuals to provide further training, further education, or the purchase of essential equipment and naturally, industry may be an extremely useful source of good quality recycled equipment.
· Individuals with the necessary skills and background can generally be called upon to offer encouragement, some informal training and plenty of information sharing.

One of the advantages to be gained from having a number of partners is that it avoids too much power being concentrated in the hands of one group, or one individual. A Board of Directors made up of the service providers, funding partners and representatives of the teleworkers themselves would be very much preferred to a 'one man (or woman) show' approach since every aspect of the operation would be open to monitoring.

Experience has taught us that the success, or failure of a teleworking scheme will depend to an inordinate degree upon the integrity of the co-ordinator who seeks out work and then sets tasks for individual teleworkers. I cannot over emphasise the fact that this scenario is true especially of persons with disability, who by virtue of their disability may be far more vulnerable, thus lending themselves open to exploitation by an unscrupulous, non-disabled co-ordinator.

Focus on AB-ility not DIS-ability

We have heard these words so many times over the last fifteen years that they have made the easy transition from being to true, to becoming a truism and acquiring the jangling, hollowness of a cliché. A new approach to employment, like remote working will certainly have a better chance of becoming a viable option for the employment of persons with disability, if the change is wrought sensitively and systematically. However, no amount of careful planning will guarantee its success, unless careful attention is given to the 'people factor'.

People with disability do not differ essentially from other persons, but given society's long-term misunderstanding and mishandling of their aspirations and needs, it is hardly surprising that many individuals have to contend with man-made handicaps imposed upon them over and above their own disability.

One must bear in mind that medical assessments carried out at the outset of illness, or accident have tended to emphasise difference and dis-ability. Such negative assessments by too many professionals continue to stress the individuality's inability to perform satisfactorily and to highlight, or assume failure. Restricted choice in many areas, such as, (a) to educational provision, (b) to employment opportunities, and (c) access to physical environment, to services and to information have led many persons with disability to develop low self-esteem and low expectations. The end result is a low-status job with a correspondingly low income. Many persons with disability take a poor quality of life for granted and are not surprised when their worst fears are realised.

Laying the foundations

It becomes obvious from all this that much ground-work needs to be done before people with disability in Malta will be in a position to benefit fully from new employment ventures, such as teleworking. I say this, not because I believe that such schemes are of little value to people with disability, nor to show that they are impossible to realise, but to emphasise the fact that the majority of people with disability in Malta need to develop their own skills, before they can profit from innovative ideas such as flexible working schemes.

The introduction of (a) inclusive education and (b) IT as an integral part of the education system by the Division of Education (presently, in the primary sector only) will go a long way towards creating a new generation of IT-literate, disabled youngsters. These will see employment in an information-technology centred and flexible environment as a natural progression of their schooling. But what happens in the meantime?

Although we cannot dream of large numbers, I do believe that an increasing individuals with disability may benefit from some exposure to remote working, flexible employment if they are first provided with supported learning programmes, to improve their literacy and numeracy skills and basic training in IT-related skills. Again, our experience has been that where improvements in general education have been coupled to IT-related skills, the result has been an almost immeasurable improvement in self-esteem and enhanced employment options. If all else is ignored, these two outcomes alone are compelling arguments in favour of the development of remote, flexible working initiatives as a means of significantly improving the quality of life of many persons with disability.

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