Science and Society - Critical Comments on the 1999 World Conference on Science, Budapest, Hungary

Gregor Wolbring, biochemist and scientific advisor to the Thalidomide Society of Canada, reports on the 1999 World Conference on Science, Budapest, Hungary from the perspective of a person with a disability. Internet publication URL: www.independentliving.org/docs1/wolbrin1.html

The Natural Sciences (biological/medical sciences) have a huge impact on society and within societies the biggest impacts are felt among disadvantaged/marginalized group. Among these groups we can count women, disabled people, ethnic minorities and indigenous people to name a few. I will look at the characteristic disability for the rest of the report but most of my reasoning and arguments can be extended to every disadvantaged group.

One of the biggest problems the disabled, have with the advances in Natural and other Sciences, is the influence those disciplines exert on public perception of the meaning of disability. Yet, "the disabled" have little impact on the Natural Sciences. They are virtually absent from the decision-making process that shapes the directions and policies of those sciences."The disabled" are not involved even in the debates over whether and how to use the results of advances in biological/medical sciences. One of the hopes for the 1999 World Conference ON SCIENCES was that its documents would acknowledge the lack of access of disadvantaged groups to science and technology on the education, research and policy levels and call for action to mend those deficiencies.

By the time the conference started, it was evident that there were problems. While it is true that women were only 25-30 % of the delegates, which is less than their percentage in society (45-55%), it seemed as if I was the only one voicing concerns of disabled people. Now if you look into how many people attended the conference (see Fred Roots excellent report) you can do the math that the percentage was 0.0.... for disabled people. Another problem was accessibility. Some of the problems could have been solved rather easily, had people thought about them beforehand. For example, many conference session as e.g. the one on biology and health took place, between the second and fourth floor in buildings without an elevator. They could have been held at accessible venues (which are available in Budapest). Presumably, the organizers did not think about the possibility of a wheelchair user among the delegates. If there had been delegates who were blind or deaf, they would have had problems too. There were however also political problems. From the beginning of the conference to the final drafting of the documents, I found myself fighting with women fighting for women's issues . The women were adamant about not having any other disadvantaged group mentioned other than women (ESPECIALLY IN THE PREAMBLE). I also was surprised that at the gender mainstreaming workshop it seemed as if every speaker looked at women access to science without looking at women who have not only the label "women" against themselves but other labels as well (e.g. Disability, not mainstream ethnicity, indigenous women). Some of the statistics mentioned at the workshop very clearly only had the mainstream women in mind and not women who are disadvantaged through other problems (disability, ethnicity, being an indigenous women just to name three).

As matters turned out, I was able to convince the drafting committee to add issues pertinent to disadvantaged groups, including the disabled, in many places of the documents. I would like to thank the Canadian delegation for allowing me to voice my concerns in a very vocal way and I would like to thank the people who decided the make up of the delegation for opting for a very diverse group representing the diversity of Canadian culture and society. As Fred said in his report we were by far the most diverse group at the conference. I should also mention that my concerns were supported by other countries especially New Zealand and the UK who actively supported my position in the drafting committee meetings.

Below now I just give you the paragraphs which I think are important to disadvantaged groups. There are many quotes in it mentioning the characteristic "women". I presume that someone is talking about the paragraphs pertinent to mainstream women.

Quoting from sections of the "Declaration on Science and the use of scientific knowledge"

25. . . . . that there are barriers which have precluded the full participation of other groups, of both sexes, including disabled people, indigenous peoples and ethnic minorities, hereafter referred to as "disadvantaged groups". . .

34. Science education, in the broad sense, without discrimination and encompassing all levels and modalities is a fundamental prerequisite for democracy and for ensuring sustainable development. In recent years, worldwide measures have been undertaken to promote basic education for all. Special attention is still required for marginalized groups. It is more than ever necessary to develop and expand science literacy in all cultures and sectors of society as well as reasoning ability and skills and an appreciation of ethical values, so as to improve public participation in decision-making related to the application of new knowledge. .

42. Equality in access to science is not only a social and ethical requirement for human development, but also a necessity for realizing the full potential of scientific communities worldwide and for orienting scientific progress towards meeting the needs of humankind. The difficulties encountered by women, constituting over half of the population in the world, in entering, pursuing and advancing in a career in the sciences and in participating in decision-making in science and technology should be addressed urgently. There is an equally urgent need to address the difficulties faced by disadvantaged groups which preclude their full and effective participation.

Quoting from the Science Agenda-Framework for Action:

17. Scientists, research institutions and learned scientific societies and other relevant non-governmental organizations should commit themselves to increased international collaboration including exchange of knowledge and expertise. Initiatives to facilitate access to scientific information sources by scientists and institutions in the developing countries should be especially encouraged and supported. Initiatives to fully incorporate women scientists and other disadvantaged groups from the South and North into scientific networks should be implemented. In this context efforts should be made to ensure that results of publicly funded research will be made accessible.

59. Governments should promote the further development or setting up of national statistical services capable of providing sound data, disaggregated by gender and disadvantaged groups, on science education and R&D activities that are necessary for effective S&T policy-making. Developing countries should be assisted in this respect by the international community, using the technical expertise of UNESCO and other international organizations.

79. The full participation of disadvantaged groups in all aspects of research activities, including the development of policy, also needs to be ensured.

81. Governments and educational institutions should identify and eliminate, from the early learning stages on educational practices that have a discriminatory effect, so as to increase the successful participation in science of individuals from all sectors of society, including disadvantaged groups.

91. Special efforts also need to be made to ensure the full participation of disadvantaged groups in science and technology, such efforts to include: 
- removing barriers in the education system; 
- removing barriers in the research system; 
- raising awareness of the contribution of these groups to science and technology in order to 
- overcome existing stereotypes; 
- undertaking research, supported by the collection of data, documenting constraints; monitoring implementation and documenting best practices; 
- ensuring representation in policy-making bodies and forums.

There are many other sections of the documents which, I would argue the disabled can use as well.(my comments are in brackets) For example: Quoting from sections of the "Declaration on Science and the use of scientific knowledge"

33. Science and technology should also be resolutely directed towards
prospects for better employment, improving competitiveness and social
justice. Investment in science and technology aimed both at these
objectives and at a better understanding and safeguarding of the planet's
natural resources base, biodiversity and life-support systems must be
increased. The objective should be a move towards sustainable development
strategies through the integration of economic, social, cultural and
environmental dimensions.

[Here are three phrases which include disabled people: 
1) "Social justice" can't be realized without the involvement of disabled people. For example, we must be able to discuss with those concerned whether eugenic practices are consistent with social justice. 
2) The concept of "biodiversity" most often is applied to plants but, clearly, human beings are part of "biodiversity" and "human beings" include all the varieties. Every form of every characteristic of human being is part of the planet's "biodiversity". 
3) "Social and cultural ...dimensions" of course would include disabled people.]

 

39. The practice of scientific research and the use of knowledge from that research should always aim at the welfare of humankind, including the reduction of poverty, be respectful of the dignity and rights of human beings, . . .

[Obviously, the "welfare of humankind" has to also include the welfare of disabled people and they are the only ones who can say what their "welfare" should consist of.]

43. New curricula, teaching methodologies and resources, taking into account gender and cultural diversity, should be developed by national education systems in response to changing educational needs of societies.

[Obviously disabled people are part of every culture and part of the cultural diversity of a society. And their educational needs are also part of the educational need of society. Further, because the disabled are so greatly affected by biological/medical research, we must recognize society's own educational need to learn how to deal with disabled people.]

 

Quoting from sections of the Framework for Action:

14. Through participatory mechanisms involving all relevant sectors and stakeholders, Governments should identify the needs of the nation and give priority to support of the public research needed to achieve progress in the various fields, ensuring stable funding for the purpose. Parliaments should adopt corresponding measures and levels of budget appropriation.

[Obviously disabled people are "stakeholders" and have to be involved in the "participatory mechanism" that identify "needs".]

32. Modern scientific knowledge and traditional knowledge should be brought closer together in interdisciplinary projects dealing with the links between culture, environment and development in such areas as the conservation of biological diversity, management of natural resources, understanding of natural hazards and mitigation of their impact. Local communities and other relevant players should be involved in these projects. Individual scientists and the scientific community have the responsibility to communicate in popular language the scientific explanations of these issues and the ways in which science can play a key role in addressing them

[As already discussed, "culture" and "biodiversity" imply the involvement of disabled people.]

46. Non-governmental organizations should play an important role in the sharing of experience in science teaching and education.

[This, together with the "social justice" called for earlier, obviously means the involvement of NGO's who represent disabled people. One APPLICATION which jumps to mind right away would be to educate genetic counselors and the medical profession about the non-medical side of disability, about the personal and societal components of disability. The non-medical dimensions are already recognized in the UN definition of disability, which defines disability in social terms, not medical terms.]

56. Science and technology policies should be implemented that explicitly consider social relevance, peace, cultural diversity and gender differences. Adequate participatory mechanisms should be instituted to facilitate democratic debate on scientific policy choices. Women should actively participate in the design of these policies.

[As sections 25 of the Declaration and 91 of the Framework clearly indicate that disabled people should be part of the policy making process, section 56 of course also includes disabled people. They and their concerns are part of "cultural diversity" and "social relevance".]

 

58. Governments should support graduate programs on science and technology policy and social aspects of science. Training in legal and ethical issues and regulations guiding international research and development in strategic areas such as information and communication technologies, biodiversity and biotechnology should be developed for scientists and professionals concerned. Science managers and decision-makers should have regular access to training and updating to cope with the changing needs of modern society in the areas of science and technology.

[Again, based on sections 25 and 91, this section should imply the involvement of disabled people. The disabled can inform and enrich any ethical training of scientists.]

68. All countries should encourage and support social science research to better understand and manage the tensions characterizing the relations between science and technology on the one hand, and the different societies and their institutions on the other hand. Transfer of technology should be accompanied by analysis of its possible impact on populations and society.

[That implies the involvement of disabled people.]

69. The structure of educational institutions and the design of their curricula should be made open and flexible so as to adjust to the emerging needs of societies. Young scientists should be provided with a knowledge and an understanding of social issues, and a capacity to move outside their specific field of specialization.

[Obviously disability is a "social issue" and one which has to be addressed by society but addressed, according to sections 25 and 91, with the involvement of disabled people ]

82. Every effort should be made to eliminate open or covert discriminatory practices in research activities. More flexible and permeable structures should be set up to facilitate the access of young scientists to careers in science. Measures aimed at attaining social equity in all scientific and technological activities, including working conditions, should be designed, implemented and monitored.

[This, from the elimination of "discriminatory practices" to "attaining social equity" has to include disabled people.]

90. Taking into account the outcome of the six regional forums on women and science sponsored by UNESCO, the Conference stresses that special efforts should be made by governments, educational institutions, scientific communities, non-governmental organizations and civil society, with support from bilateral and international agencies, to ensure the full participation of women and girls in all aspects of science and technology, and to this effect to:

  • promote within the education system the access of girls and women to scientific education at all levels 
  • improve conditions for recruitment, retention and advancement in all fields of research; 
  • launch, in collaboration with UNESCO and UNIFEM, national, regional and global campaigns to raise awareness of the contribution of women to science and technology, in order to overcome existing gender stereotypes among scientists, policy-makers and the community at large; 
  • undertake research, supported by collection and analysis of gender-disaggregated data, documenting constraints and progress in expanding the role of women in science and technology; 
  • monitor the implementation and document best practices and lessons learned through impact assessment and evaluations; 
  • ensure an appropriate representation of women in national, regional and international policy and decision-making bodies and forums; 
  • establish an international network of women scientists; 
  • continue to document the contributions of women in science and technology. 
  • To sustain these initiatives governments should create appropriate mechanisms, where these do not yet exist, to propose and monitor introduction of the necessary policy changes in support of the attainment of these goals.

[Certainly, if these are appropriate measures for women, the same has to apply to the group of disadvantaged people which includes disabled people. if we take the spirit of para. 25 of the declaration.]

Further Considerations

The documents of the Conference are not legally binding. It is now up to all of us to use the documents in such a way that we can achieve change. It was always clear that the documents would not be radical papers but they do mention many problems and they do state that women and disadvantaged groups should be involved in policy making processes. That's a start and it's a quantum leap for disabled people because for the first time THEY, as well as women, indigenous people, and ethnic minorities, have an international document which explicitly says that THEY should be part of the policy-making process and should have equal access to science and technology research and education. If the 1999 World Conference on Science leads to an involvement of disabled people and other disadvantaged groups in the policy making process, if the conference leads to increased dialogue and respect among disadvantaged groups (such as women and the disability community), if the conference leads to an end of the Animal Farm philosophy ( where some are more equal than others), then the conference was a success. If disabled people and other disadvantaged groups now are to be heard in similar conferences such as the Conference about Science and Technology, planned in Stockholm for next year by INES (International Network of Engineers and Scientists), then this conference was a success (so far they have a big section on Women ans Science but nothing related to disadvantaged groups). If disabled people and other disadvantaged groups now are to have access to ethics and policy making boards, if their voices now are to be taken seriously, then this conference was a success. And that success, that victory, if you will, would not only be a victory for the community of disadvantaged people but, given the many valid points, valuable perspectives, and intelligent, talented people the community of disadvantaged people can bring to the bioethical, medical, and scientific debates, the victory would be for all of us humans.

 

 

 

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