Web Posted on: August 4, 1998

The Information Society disAbilities Challenge (ISdAC):
Paving the way for the active end-user

Carlos A. Velasco
Chairman of the ISdAC-team
ATEC, s.l., C/ Moreja 30 - bajo B, E-28041 Madrid (Spain)
Tel/Fax: +34-91-318 0943
email: velasco@globalmail.net

Abstract

This paper focuses on the role that the end-user is playing in the context of Assistive Technology (AT) R&D in the European Union. It analyses the changes witnessed in the previous years, the situation of the market and the providers, and proposes a different approach to empower the role of people with disabilities within the future framework of the research and implementation process of AT in the EU. It introduces ISdAC and how its objectives can contribute to this approach.

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1. Introduction

The role played by the end-user in the Research and Development of new AT devices and services has changed in the last years.(1)The society is displacing the image of people with disabilities as mere charity acceptors, by a more comprehensive view of the individuals. This shift is the result from the effort of the disability rights movement with the collaboration of many institutions and individuals. The earliest manifestations appeared in the provision of general services by public authorities and private companies,(2) and were strengthened by EU programmes like TIDE, HORIZON, TURA and many others with a direct or indirect link with people with disabilities.

We want to present in this paper a review of the uptake of new technologies and services among people with disabilities in Europe, and new approaches that can be applied to spread their use in the EU.(3) Within this framework, we feel that ISdAC can become a valuable instrument that will allow a closer collaboration between people with disabilities and the developments of the information society. This approach represents a challenge, but it offers new opportunities to widen markets for the European industry, and conveys new ways of work, communication and social interaction into the community of people with disabilities.

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2. The providers and the market

We will not go through the figures that demonstrate the potential market for AT in Europe.(4) A detailed review of such figures shows that, in 1993, there was a potential market of 25 millions of disabled and elderly people in the EU, growing to 32 millions by year 2020. Why this figure has not led to a comparable investment from the industry? Why the handicapped community appears like a not very interesting market? Some authors focused their work in the analysis of the AT market in Europe. They revealed some of the roots of the problem,(5) which are manifold: market fragmentation, technological background, provision needs, non-uniform standards, non-adequate testing facilities, and the social structure of the target group.

This unpromising landscape has its roots in wider problems of the European industry. We believe that a strong focus trying to solve the problems of the AT industry as an isolated item within the framework of the European industry is a mistake. Michels(5) and others(6) propose a deeper involvement of the governments by (i) increasing their investment in research through the universities to promote innovation, and (ii) "forcing" the market by the introduction of legislation to promote a higher degree of equality in the society.

We believe that the first approach will not solve the problem because the lack of investment in R&D, when compared with its American or Japanese counterparts, is common to the European industry as a whole, and it will not be solved by some miraculous recipe applied to the sector. Initiatives such as the Innovation programme(7) from the European Commission are driving efforts in the proper direction. However, this endeavour will not be successful by itself if it is not accompanied by other measures seeking a uniform legal and economical framework. While the EU maintains these differences among its member states, it is hard to believe that it will ever contend in good conditions against the U.S.A. and Japan. These countries have markets of equivalent size to ours, but with the same legal framework, with the same language, and with a unique set of standards.

The second point is not of lesser importance. It is hard to evaluate their real impact from our perspective, but it is clear that examples like "The Technology-Related Assistance for Persons with Disabilities Act" (1988), and "The American with Disabilities Act" (1991) are important examples to follow in the EU. The publication of the ADA has given a legal tool to private and public organisations in their demands for a more accessible technology, and they can now require the use of accessible hardware and software by the administration, the school system, or the universities. Many American companies of the software industry like Microsoft,(8) Sun(9) or IBM(10) have working groups in the area, because of the social pressure that disabled people organisations and customers are imposing on them, reinforced with the ADA. Overlooking this fact could imply an important yield in the market share and a very negative impact on the public image of the company. The recent failure of Microsoft to incorporate in the latest version of its Internet browser the accessibility characteristics already included in an earlier version led to a quick acknowledgement of the "mistake" and a new release of the software. However, in this side of the Atlantic, social policy is not included in the mandate of the EU, and cannot, at present, be subject to European legislation.(11) An important change on these lines will substantiate the efforts of disability organisations for equal access to education and employment using new technologies.

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3. User-Centred Design: a myth

In parallel with the above-mentioned process of understanding the market, the awareness about the need of a deeper involvement from the users grew among the different actors of the design, production and marketing of AT products: universities, research institutes and manufacturing companies. Some authors have emphasised the methods of evaluation(12) of the products, focusing on concepts like ease of use, value for money, safety, maintenance, effective operation, and functional and aesthetic requirements. Others have analysed the benefits of the involvement of elderly and disabled user-groups in the standardisation process.(13) Furthermore, an important outcome of this process has been the analysis of the user requirements(14) by means of a systematic and consistent method, USERfit.(15) The concept of usability, as defined in the ISO 9241 standard, is applied in the context of AT. An iterative method guides the designer of any AT product through a detailed procedure from the design and conception of the product to the evaluation process.

Nevertheless, within these processes end-users play a passive role. They are monitored, controlled and interviewed. They play a small role as evaluators of intermediate or final products. They are never asked WHETHER a product or service should be designed, they are not INVOLVED in every single step of the R&D work. We believe that user-centred design (or design for all) is a myth. R&D of AT products and services must include a previous phase where the "WHETHER" question is proposed and the paternalistic approach –habitually result of a "technology-push"– is replaced by a comprehensive analysis where users themselves provide feedback on the social and economical impact of these products. Consequently, the market and the community of elderly and disabled people will benefit from products that respond to a real demand. We are aware that this theoretical approach will not be feasible until exists a European-wide network of end-users with the knowledge base to collaborate with, and even drive, the industry through this line of co-operation, but this is one of our priorities.

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4. The Information Society disAbilities Challenge (ISdAC)

ISdAC is an initiative born one year ago from a discussion list about Telework and Disability at European Telework Online.(16) The co-operation of some enthusiasts led to the issue of our working document and the creation of a web site with information about the initiative. ISdAC was presented for the first time at the European seminar "TELEWORK IN EUROPE: The bridge between social and societal needs and new technology opportunities," organised by DG-XIII in Brussels (June 5, 1997). We were recently awarded in the ceremony of the European Telework Week Awards (Brussels, November 7), as the Most Innovative Contribution to the Advance of Telework in Europe. By a comprehensive use of ICTs, our team has been able to cope with several of the challenges we have faced this year, and to maintain an intensive activity online. We sustain our own web site, we have an open discussion list, plus a team-restricted list, and we have received support from dozens of organisations and individuals from Europe and the rest of the World. We acknowledge as well the strong back up that we have received from the user groups of the Periphera Project(17) for the year 1998. An extension of Periphera’s Project Programme will allow ISdAC to consolidate its activities and programmes for this year, giving us a sound structure to fulfil our objectives.

Our activities are not only focused on telework. We do believe that teleworking and teletraining(18) will allow to the community of people with disabilities to make a valuable intellectual, social and economical contribution in the context of an Information Society and a Networked Economy. However, the actual situation of people with disabilities within the society is not tackling the premises that will make that a fact. ISdAC intends to bridge the gap originated by the polarity between EC programmes focused on social and economical constraints of some collectives, like TURA, and those focused on new technological developments, like TIDE. Our objectives are:

• To develop an online community. The foundations of this community have been set, and we are trying to convert it into a European "listserv–village" where issues related to new technologies and their interaction with the information society and people with disabilities can be discussed. Furthermore, ISdAC will be the vehicle to identify barriers to success for an egalitarian Information Society, such as:
  
  1. Affordability of telematics & training – especially where people with disabilities need access and equipment for a period of learning and training before they can hope to become self-sufficient. The necessity to retain the equipment after the training period must deserve attention as well.
  2. Credibility and acceptance – until we develop a critical mass of successful exemplars, there always will be people who will never believe that people with disabilities can become socially and economically successful online.
  3. Regulatory and fiscal issues – where in many cases the structure of the welfare system that was appropriate for the old society, is inhibiting the progress in the Information Society and the Networked Economy (the benefits trap).

This type of community has their pros and cons.(19) However, our approach is entirely different from similar networks where parents have a prominent role.

• To constitute a European Network of active end-users. Pascoe et al(20) pointed out that network as an asset that will benefit the evaluation of AT equipment in Europe. We want to take this concept one step further. We are aware that there is a need for European Curricula in AT,(21) and these Curricula should be applied not only to rehabilitation engineers, but to every single actor in the field: therapists, carers, social services providers, etc. The creation of such a network by adding capable professionals with disabilities working in these fields, and by stimulating that more people with disabilities follow these curricula, will result in an overall benefit for the European industry and the end-users. The involvement of active–users(22) in activities such as standardisation, evaluation, service delivery, present and future R&D, legislation, training and consumer boards will lead to top quality technologies and services delivered to the European citizen.
  
• To advise individuals and organisations in the field. ISdAC should support individuals and organisations of people with disabilities to become successfully active online thus they understand the opportunities. It should help them to identify project opportunities to participate in and contribute to EC and national programme projects.
  
• To explore new roles for disabled users in technology and application work. Within this framework, ISdAC should address the needs of those whose intellectual or physical gifts may not enable them to actively participate in intensive online activities. ISdAC will learn of previous experiences in the field(23) and will investigate new ways to empower that collective of users.

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5. The Fifth Framework Programme

It will not make sense to present our initiative without referring to the present situation of the Disabled and Elderly Sector within the Fifth Framework Programme.(24) The controversy about the future of TIDE, either as being part of a Health programme, or focusing only in the ageing population will endanger many achievements of the programme.

In the first case because the Health programme will blur the edges of the boundary that now clearly distinguishes between Assistive Technology and Health-related technology, and will bring back the old topic of "disabled=non–healthy." The second approximation will not favour a huge number of European citizens whose needs are not sometimes close to those of the elderly people. The Fifth Framework Programme should reconsider whether a programme must cover under the same umbrella both segments of the population.

Our view is that TIDE has contributed to the provision of services and AT equipment for the disabled and elderly in the EU. The challenge is to turn this contribution into a meaningful impact that will allow to people with disabilities –using technologies developed under the umbrella of TIDE– to fully participate in and contribute to the Information Society. A programme focused only on leading–edge technological solutions will not be successful within the framework of the Information Society. The success of the programme will imply a close co-operation between TIDE and other EC programmes focused on legal, social and economical aspects of people with disabilities within the Information Society. Furthermore, TIDE should promote the involvement of end-users as active participants of R&D projects, like axes drive the wheels, and are not only the "centre" of the wheel.

References

1. The paper focuses on the end-user and not in the global concept of user utilised by some authors, that includes the facilitators of the technology as well: family and user immediate environment, therapists, etc. Nevertheless, some of our conclusions could be applied as well to them.
2. R. Worsley, in Rehabilitation Technology (Proceedings of the 1st TIDE Congress, Brussels, 1993). E. Ballabio, I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1993).
3. C.A. Velasco, Computer-Mediated Communication Magazine (Special Focus: Disability and CMC, February 1998). http://www.december.com/cmc/mag/1998/feb/velasco.html (1998).
4. S. Carruthers, A. Humphreys and J. Sandhu, in Rehabilitation Technology (Proceedings of the 1st TIDE Congress, Brussels, 1993). E. Ballabio, I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amster-dam (1993). EUROSTAT, Rapid Reports, Population and social conditions: Disabled People - Statistics. ISSN 1016-0205. Commission of the European Communities, Luxembourg (1992).
5. H.T.P. Knops and T. Bougie; and M. Soede, P.A.M.E. Röben and H.T.P. Knops; and H. Michels, in Rehabilitation Technology (Proceedings of the 1st TIDE Congress, Brussels, 1993). E. Ballabio, I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1993). E. Kampmann in The European Context for Assistive Technology (Proceedings of the 2nd TIDE Congress, Paris, 1995). I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1995). V. García and T. Herrera (eds.) Sector de la Rehabilitación (Documentos COTEC sobre necesidades tecnológicas). Fundación COTEC para la innovación tecnológica, Madrid (1997).
6. J.I. Lindstrom, in Rehabilitation Technology (Proceedings of the 1st TIDE Congress, Brussels, 1993). E. Ballabio, I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1993).
7. The Innovation Programme: http://www.cordis.lu/innovation/home.html
8. Microsoft Research: http://research.microsoft.com/, http://www.eu.microsoft.com/
9. Sun Technology and Research - Enabling Technologies: http://www.sun.com/access/
10. IBM Special Needs Systems Group: http://www.rs6000.ibm.com/sns/
11. J. Alastuey, M. Kerdraon, J. Ekberg, E. Kemppainen, J. Peters, P. Healey and S. Cooper, Proposals for future action on legislation and regulation impact on Rehabilitation Technology availability. TIDE 309: Heart Study Report D.1.3. The Swedish Handicap Institute, Vällingby (1994).
12. J. Sandhu, I. McKee and S. Carruthers, in Rehabilitation Technology (Proceedings of the 1st TIDE Congress, Brus-sels, 1993). E. Ballabio, I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1993).
13. A. Brandt and J. Gjøderum, in The European Context for Assistive Technology (Proceedings of the 2nd TIDE Con-gress, Paris, 1995). I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1995).
14. C. Nicolle, D.F. Poulson and S.J. Richardson; and S.J. Richardson and D.F. Poulson, in The European Context for Assistive Technology (Proceedings of the 2nd TIDE Congress, Paris, 1995). I. Placencia-Porrero and R. Puig de la Bel-lacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1995).
15. USER Consortium, USERfit, a practical handbook on user-centred design for Assistive Technology. ECSC-EC-EAEC, Brussels-Luxembourg (1996).
16. European Telework Development Initiative (ACTS AC223): http://www.eto.org.uk/etd/
17. Periphera (TURA UR-1022): http://www.periphera.org/
18. D. Oborne, J. Hough and C. Davis; and S. Kenny; and M.A. Milpied, in The European Context for Assistive Technol-ogy (Proceedings of the 2nd TIDE Congress, Paris, 1995). I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1995). J. Lewis and D. Firnberg, "Telework and people with disabilities," in the study "Telework, Teletrade and Open Electronic Networking." Management Technology Associates, U.K. (1993).
19. D.A. Avery, Computer-Mediated Communication Magazine (Special Focus: Disability and CMC, Jan. 1998). http://www.december.com/cmc/mag/1998/jan/avery.html (1998). S. Fox, Computer-Mediated Communication Maga-zine (Special Focus: Disability and CMC, Feb. 1998). http://www.december.com/cmc/mag/1998/feb/fox.html (1998).
20. J. Pascoe, H. Pain, D.L. McLellan, S. Jackson and C. Ballinger, in The European Context for Assistive Technology (Proceedings of the 2nd TIDE Congress, Paris, 1995). I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1995).
21. TIDE, "HEART Study Report E.3.2 - European Curricula in Rehabilitation Technology Training." The Swedish Handicap Institute, Vällingby (1994).
22. T. Lagerwall, G. Fagerberg and U. Göranson, in The European Context for Assistive Technology (Proceedings of the 2nd TIDE Congress, Paris, 1995). I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1995).
23. B. Furugren and M. Lundman, in The European Context for Assistive Technology (Proceedings of the 2nd TIDE Con-gress, Paris, 1995). I. Placencia-Porrero and R. Puig de la Bellacasa (DGXIII, CEC, eds.). IOS Press, Amsterdam (1995).
24. FINAL REPORT. "Strategic Requirements Board for the Fifth Framework Programme (Disabled and Elderly Sector)." European Commission - DGXIII, Brussels (1997).

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