The Uptake of CMC in the European Union Among People with Disabilities
by Carlos A. Velasco
"... I am just someone working by means of telecommunications, and I think others should have this chance as well."
Computer-Mediated Communication (CMC) holds for many promising things, like communication, social interaction, and exchange of information (Gold, 1997). I would add teleworking. But, what is the real role of CMC and People with Disabilities (PwD) when we are heading towards the end of the century in the European Union? It is difficult to draft an answer to that question, and it will be a Herculean effort to expose every single aspect of the problem. I want to offer to the reader a personal view of the problem which arose from my own and other people's experience.
The European Union's Effort to Promote Training, Research, and Development
The European Uniona--gathering of economical interests in the late 1950's to fight against the economical supremacy of the "American" giant--is now a solid political and economical project towards an European union of States. There is no doubt that the process will take some decades to be completed, specially in many social and political issues, like the role of Eastern Europe countries within the union, but the snowball is rolling and nobody dares to stop it - except in electoral season, like in the recent examples of UK and France -.
Within this context, and for more than a decade, several training and R&D programs have been carried out in the EU sponsored by the European Commission and many other EU dependant organizations. The goal is to pump an atmosphere of collaboration among all the industries and research institutes of the EU.
Under this umbrella millions of ECUs (1 dollar is barely 1 ECU) have been spent in these programs with the collaboration of small and big enterprises, research institutes and end-user organizations. The description of all these research lines and training programs are outside the scope of this paper. I encourage the interested reader to browse in the links of the References Section.
CMC has been a central point of many of these programs, although a different terminology is used in this side of the Atlantic (the terms information technologies and telematics are of common use). The needs of PwD have been widely addressed within the framework of these programs. They have shown the type of benefits and inconvenients that can be expected from the general use of CMC technologies, teleworking, etc. Nevertheless, this plethora of results has not led to an explosion in the use of CMC. I want to focus this paper in the identification of the barriers that bumped this growth. These reflections are a result of my own experience when managing, collaborating, and evaluating some of these programs, and they somehow reflect a personal bias because of my disability.
There are many factors damping a general implementation of CMC technologies in the EU. They can be classified in social, economical and technological factors. The non-European reader must bear in mind that the EU is a conglomerate of 15 countries. This represents 371 millions of inhabitants with many social, cultural and economical differences. Although many member states are in the G7 elite, some other are far from that point, specially in social benefits and welfare aspects, which are very important for PwD. Nevertheless, the best way to identify barriers to progress is to identify the role of each social actor. In regard to CMC we can identify the following: the disabled person, the environment of the disabled person and end-users organizations, the authorities, and the commercial side (telecommunications companies, service providers and other companies in the field).
People with Disabilities
It is evident that the main players of the game can present obstacles to the diffusion of CMC. Nevertheless, those obstacles have usually their origin in extraneous factors to PwD. I illustrate this with examples of recent experiences.
A frequent difficulty with these training programs is the poor dissemination of their results. Many times, the know-how is kept within the walls of the institutions involved in the programs, and not made publicly available. A further issue is the lack of continuous programs. A high percentage of them do not continue after the funded phase, and this prevents the creation of a stable network of training centers. Additionally, the participants in these programs do not have the opportunity to retain the technology, nor they have access to alternative funding schemes to acquire this type of equipment. The equation of this scheme is reduced to "quality training" + going-back-home = failure.
The economical barriers target three important issues. The first one is the high cost of CMC. The explosion of the PC market has lowered the costs of standard equipment: hardware and software with a prohibitive cost a few years ago, now fit in the budget of a standard consumer. Nonetheless, the link between CMC and the disabled person - i.e. assistive technology devices - is far from being affordable. The reasons for that will be shown in other subsection, but the influence of this factor cannot be neglected, specially in countries where the welfare benefits rarely cover this type of equipment.
The latest point brings about the issue of the difference of social benefits in the EU. As an example, whereas a physically disabled person who never worked will receive from the state in Spain $250 per month, the same person in Germany will receive more than $1,000 per month, together with some other benefits. This means that in Spain, a subscription to an Internet provider will represent 10% of the monthly income! It is easy to imagine other priorities before an Internet subscription.
Finally, within the economical aspects, it is worth to mention an issue that should deserve some reflection from the legislators in the EU: the social benefits trap. The total incompatibility between many welfare benefits and incomes due to work is preventing many valuable workers from entering into the labor force. It is hard to begin to work within a project when you must renounce to your only source of income. Legislators should widen their views of PwD as active participants of the society, and not only as charity acceptors.
The barriers built by the immediate environment of PwD (friends and family) are usually the same as the previous paragraph. I believe that an adequate dose of unbiased information can be enough to overcome these barriers. The information given to the immediate environment of a disabled person must be realistic, clear, concise and easy to understand. It should avoid to create groundless expectations, which - in the long term - will create more technology foes.
I already mentioned the lack of understanding among many social actors of the implications and benefits of a widespread use of CMC by PwD. This lack is more surprising when coming from representatives of organizations of disabled people. Reluctant, and even negative attitudes are very frequent in many boards and direction teams all over Europe. I think that the justification can be found in the fact that misinformation from some of the media, technical implications hard to understand to the newcomer, and fears to lose the status quo reached within the organization lead to very negative attitudes.
The latest is a key point. A very influent person in the field of disabilities in Spain, told me recently in an off-the-record conversation "All this fuzz about the Internet and Assistive Technology is just a way through which you, technicians and engineers, want to step in the field of disability, and to weaken our numerous social conquests."
The huge difference in social benefits between EU countries - see, for instance, the results of the HEART Report sponsored by the TIDE program - led to the appearance of a sort of oligarchy of professionals of the disability rights. With exceptions, these people make their living on politics, and have gained their reputation throughout a long career of negotiations with the public administration. They also exercise a strict control over their organizations, preventing fresher ideas to arise. Their claim is that efforts addressing the use of ICTs by PwD will weaken other vindication areas: accessible transport, unemployment rights, etc. They will never see ICTs as a necessary complement to these efforts.
A progressive change in the attitudes of the leaders of these organizations must go through dissemination programs that will help them to identify technology development opportunities and to understand the market they are addressing.
This subsection covers two key players: social workers, and legislators.
My experience with social workers is diverse. In general lines, their behavior is quite similar to that of the leaders of disabled people organizations. They see themselves as charity donors, and the fast pace of changes within the Information Society is not helping them to adapt to these changes. However, there are many valuable exceptions, specially among those working for or linked with research institutes of Assistive Technology, although I see them as the exception, and not as the rule. Similar policies to those discussed earlier are also necessary.
Legislators are an important obstacle to the dissemination of CMC. Their importance in Europe is even higher for these reasons:
The latest two points will be analyzed with further details. It is obvious that a more flexible legal framework will benefit many social sectors. There is some social pressure in regard to these issues, but unless legislators, in cooperation with social actors, react soon, there will be a legal gap in the European Information Society.
One of the main obstacles to the progress of the Internet and the telecommunications in the EU has its basis in the monopolistic rights owned in many countries of the EU by public companies. These PTTs have arbitrarily boosted their fares, forgetting about any social interest that you will assume in a state-owned company. This market distortion will end in 1998. While an open market arrives to Europe, many cities in North America enjoy free local calls, and the European consumer must stand abusive rates. This point has a greater importance when dealing with PwD. PwD have an average income well below national averages, and therefore the affordability of telecommunications is a key issue.
In the other side of the line, the market of Internet Service Providers (ISP) is now very mature, and flat-rate connections are available in most EU countries in the range of 5-15 dollars.
Consideration deserves the lack of flexibility of our labor markets. Consider the problem of 15 different contractual frameworks, 15 different tax authorities, 15 different VAT laws and 14 different languages. It is difficult to imagine that a company is eager to hire someone from a different country to do some teleworking. The European Commission has launched several directives seeking for some uniformity, and many international programs have taken place under the umbrella of the European Commission, the European Social Fund and alike. However, I feel that the EU has still a long way to go in that direction, and that this lack of flexibility is in the roots of our high unemployment rates.
Our wealth and variety of cultures has an economical drawback as well: small markets. There is a history of small and medium size companies which only objective was the local markets. This tendency is more evident in markets linked directly with PwD and CMC: Assistive Technology, Telecommunications, etc. This background is not the appropriate environment to jump into the global market that the Internet demands, and furthermore, increases the cost of the delivered goods. This is a top priority for the EU, but the legal framework has not created yet an adequate atmosphere for global entrepreneurship.
ISdAC's Different Approach
The Information Society disAbilities Challenge (ISdAC) has its origins within an Interest Group on Telework and Disability of European Telework Online. Our beginnings did not differ from any other discussion list: people sharing information and opinions about their own experiences in the Information Society and PwD.
The spark that launched our initiative was a report undertaken by Management Technology Associates on "Telework, Teletrade and Open Electronic Networking" for the UK Department of Trade and Industry in 1993. This report performs a detailed analysis of the situation of people with disabilities in the UK, and we found that this analysis and its conclusions could be extrapolated to other EU countries. Then, some people decided to launch ISdAC. We gathered around a document called the Challenge, where we stated the aims and objectives of our organization. This document was prepared by Carlos A. Velasco and Rob Peters of Periphera, together with some other team members.
Our objective is to promote a widespread use of information and communication technologies among the community of people with disabilities. We believe that there is a huge potential behind disabled people that is not arising in Europe, which could be a meaningful contribution to the EU economy. The ISdAC team itself is an excellent example of what a "virtual-team" of people spread all over Europe can accomplish by the exclusive use of ICTs.
We are indebted to several people and the organizations they represent that have supported our activities during these months: European Telework Online / European Telework Development, and specially its Program Director, Horace Mitchell, Rob Peters from FASTT Agency (The Netherlands), Frank Wilson from Periphera, and Jan Ekberg from Stakes (Finland).
ISdAC was officially presented in the European Commission seminar "Telework in Europe", held in Brussels on June 5, and we have been recently awarded with the European Telework Week Awards 1997, as the most innovative contribution to the development of telework in Europe.
We are building up a web site (please visit http://www.isdac.org/) were we want to present our activities, and we are in the middle of a recruitment procedure. There is also an open discussion list where we make our announcements, and it is our forum of discussions.
What are our priorities? We want ISdAC to:
This section contains a brief description of some useful references to the reader about the European Union and some of its programs and institutions.
Carlos A. Velasco (email@example.com), Chairman of the ISdAC team, is an independent consultant engineer specialized in the field of assistive technology and training of people with disabilities in ICTs. He has been working in several national programs, and collaborates as an expert with the European Union in the TIDE (Telematics Initiative for the Disabled and Elderly) program. He is himself disabled.
Copyright © 1998 by Carlos A. Velasco. All Rights Reserved.