Intellectual disabilities and the next millennium: the role of the International Association for the Scientific Study of Intellectual Disabilities (IASSID).

03Original abstract

During the relatively short history of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) since its foundation in 1964, the world has undergone remarkable socio-cultural, technological, economic and political changes which have impacted upon the lives of all of us, including people with disabilities. The pace of these changes has been almost exponential and great benefits have ensued for people in general. Socio-cultural changes have resulted in a clear acknowledgement of the need for basic human rights for all. In many countries, cultural diversity is being celebrated, but ethnic and religious divisions are still a depressing feature in both developed and developing countries. Developments in communication must be among the most significant of the massive technological advances. The globalization of the world’s economies has been starkly revealed by recent developments in Asia and the strong economic imperatives driving the unification of Europe. However, possibly the most striking development has been the growth of democratization across the world. Despite the continued presence of repressive regimes, strong democratic movements are emerging in Eastern Europe, Asia, African and South America. These developments hold both positive and negative portents for people with intellectual disability. We have witnessed the impact of catalysts such as the normalization principle, the independent living and inclusion movements, and more recently, the empowerment of people with disabilities. However, these forces have had their greatest impact in countries experiencing sound economic growth and a parallel commitment to social justice. Significant legislative initiatives in the Nordic countries, Canada, the USA and Australia, to name a few, occurred during periods of strong economic growth. With economic downturn and a subsequent move towards managerial economics, there has been a striking weakening of political resolve to honour legislative statutes. A commitment to human rights and social justice without a concomitant fiscal policy puts the achievement of those rights at risk. From its birth at the international meeting of scientists and administrators led by the late Harvey Stevens from the USA and the late Alexander Shapiro from the UK, and held in Copenhagen in 1964, the IASSID has had a modest, yet growing, role in the facilitating an exchange of scientific knowledge across national boundaries. In his insightful history of the Association, its first Secretary-General, Alan Clarke, indicated a number of factors which accelerated scientific enquiry in our field in the post-war years ( Clarke 1991). These included the spirit of optimism and humanism which attracted people to be more aware of disadvantage and to seek preventative or remedial measures. There was also a widespread belief that scientific methodology had much to offer. Of significance, too, was the strong growth of the parent lobby groups which impacted on policy and service provision at both national and international levels. Clarke (1991) also highlighted the impact of developments in the field of molecular biology, such as Lejeune’s discovery of the extra chromosome in people with Down syndrome and the subsequent growth of the field of genetic counselling. The late 1950s and early 1960s were also marked by the growth of the multidisciplinary nature of scientific enquiry in our field. Despite the broadening of the research base, much of the published work in these years followed a traditional functionalist–objectivist and positivist paradigm. In the eight triennial international congresses which followed the Copenhagen conference, a rich array of contributions from researchers across the world has been presented, with Congress Proceedings being published for each of these meetings. The IASSID has not been noted for its involvement in political action, with one striking exception. Its Executive took a strong stand in 1970 when the Communist regime in Poland removed Dr Ignacy Wald from the Chairmanship of the Local Organizing Committee for the Warsaw Congress and attempted to prevent his acceptance of the position of Honorary Vice President of the Association. Dr Wald had been an outspoken critic of the Warsaw Pact invasion of Czechoslovakia. As outlined earlier, the last 4 decades have seen dramatic developments in all aspects of human endeavour. To keep pace with these changes, the IASSID has responded with changes in its structures. These have included changes in nomenclature with ‘mental deficiency’ being replaced by ‘intellectual disability’, the establishment of the category of subscribing individual members, the development of regional groups and the adoption of the Journal of Intellectual Disability Research as the official journal of the IASSID. Another major initiative has been the development of a number of special interest research groups (SIRGs). It was decided at the Dublin Congress to move the IASSID congresses to a cycle to complement the 4-yearly cycle of the congresses of Inclusion International. Up until the Eighth congress held in Dublin in 1988, the 3-year cycle operated, with each congress resulting in the publication of a volume of Proceedings. In the late 1960s, IASSID had collaborated with then International League of Societies for the Mentally Handicapped (now Inclusion International) to establish a Joint Commission on International Aspects of Mental Retardation under the auspices of the World Health Organization (WHO). Over the years, the Joint Commission with four members from each body published a number of position papers, including the problems of people with intellectual disability in the developing world and the principles of assessment of intellectual disability. It also encouraged preventative programmes such as iodine supplementation and the WHO Expanding Program for Immunization for all children. At the Tenth Congress, held in Helsinki in 1996, the Council resolved to recommend to WHO the suspension of the Joint Commission, with each organization seeking independent status as a Non-Government Organization with WHO. In achieving this status, the IASSID has entered into an agreement with WHO to develop a number of position papers to be presented at its Eleventh Congress to be held in Seattle, USA, in August 2000. The responsibilities for the development of these papers rest with a number of the SIRGs including Ageing, Physical Health, Mental Health and Quality of Life. These happen to be the SIRGs which have been formalized to date. Others in development include Employment, Ethics, Citizenship and Empowerment, and Profound and Multiple Disabilities. These recent initiatives have had the effect of maintaining a momentum of international activities between the regular Congresses. The initiatives are also assisting in the pursuance of relevant research topics which involve a range of disciplines and a variety of scientific paradigms. Of particular note is the involvement of many more scientists in the ongoing activities of the IASSID. The early structures of the IASSID placed a heavy responsibility on the small number of executive members to maintain the momentum of the organization. The absence of a full-time Secretariat and resources to support the attendance of its Council members to regular meetings have inhibited the IASSID from playing a more active role. The broadening of both the individual and organizational membership base of the IASSID, the trialling of a part-time Secretariat based in the Netherlands, the publication of regular newsletters and the adoption of a highly respected international journal have consolidated the presence of the IASSID in the final decade of this century. In the context of the socio-cultural, technological, economic and political trends which will accompany us into the next millennium, the IASSID has a vital role to play in ensuring that people with an intellectual disability continue to see improvements in their quality of life. While discipline-based research will continue independently, the IASSID has the challenge to assist in the coordination of research so that we do not lose sight of the whole person with an intellectual disability. A recurring theme of our congresses has been ‘research to practice’. However, I believe we must address how research, policy and practice can be better integrated. As scientists, we have often been too remote from the lives of the people we are studying. We have not drawn them nor their families and carers into our research planning. We have also been reluctant to engage in debates in the political arena. Concluding remarks by Victor Walhström, a Past President of Inclusion International, in his presentation to the Helsinki Congress in 1996, provide us with salutary challenges. Victor posed three questions: 1 What can your organization and the professionals do to make your research more operative, to make your research come to be used? For doing that, you need policy decisions leading to action. 2 What can your organization do to make your research known and used by persons with an intellectual disability and their families? To do that, you need to present your research in a simple way and spread it. 3 What can you do to encourage the professionals to promote human rights even more forcefully—to be watchdogs of the rights of persons with intellectual disabilities and never ever close ranks? Competition for resources will prove to be keener in the coming decades. It is predicted that the ageing population in developing countries will place heavy welfare demands upon the decreasing working population. How will disadvantaged groups fare in economic environments that are currently increasing the gap between the elite ‘haves’ and the dispossessed ‘have nots’? Depressingly, the same gaps are appearing in developing countries, where the majority of people with an intellectual disability are to be found. I have the strong sense that we have lost the spirit of optimism and humanism alluded to by Alan Clarke ( Clarke 1991). Therefore, it is important for the IASSID to be more active in its advocacy role, joining with other international bodies to assist in keeping the needs of our population high on the political agendas. At the same time, we must not lose sight of our primary role as researchers. One of our challenges is to stimulate greater efforts in exploring the interface between the behaviour, organ systems, cellular and molecular levels of research. Observers have commented that our congresses appear to be bipolar, with discrete biomedical and socio-behavioural themes seldom interfacing. Possibly the most controversial challenge facing the IASSID in the coming years will be its response to the various implications of the human genome project for research and the attendant ethical issues that are emerging from new discoveries. On the one hand, there is the view that the possibilities offered by genetic advances will bring about a new eugenics movement offering increasing choices in human reproduction which question the essential nature of our human existence. The age of the ‘designer’ baby may be upon us. Opponents to the developments are concerned that diversity in the human condition is being jeopardized by the uncritical embracing of these new discoveries. There is the counter argument that these scientific advances will ameliorate or prevent many of the diseases which reduce the potential for life quality for many people. It is suggested that, like other major discoveries in the health field (e.g. penicillin), it will lead to a spectacular improvement in the health and well being of the population. The area in which the IASSID can play a part is in encouraging informed debate through its SIRG on Ethics. I believe we should be encouraging researchers to engage in the social, philosophical and moral debates since the implications of genome project surely transcend the level of molecular biology. As we move into the next millennium, the IASSID needs to reach out more to developing countries. Its origins were essentially influenced by North American and Western European researchers, who still dominate its activities. Despite its limited resources, the IASSID has a duty to encourage and support indigenous research efforts in the developing world. We need to be cautious in applying Western delivery systems to cultures which have different histories and mores. We also need to listen to and observe how other cultures solve their own problems. As the days of relatively generous resources may be gone for us in the developed world, we in the West may learn how to effect advances in the quality of life of people with intellectual disabilities using simpler and less costly means. Received 3 February 1999

Journal of intellectual disability research : JIDR, 1999 · doi:10.1046/j.1365-2788.1999.00205.x