III. Methodology and ethical issues 61
5. Research plan 68
5.1 Development of the research plan – principles and limitations 69
Although the implementation of Article 33 was initially the centre of gravity of the research, Article 4(3) and the fundamental requirements for the government to actively involve organisations of persons with disabilities in law-‐ and policy-‐making eventually became another important point of reference. It occurred as a result of realising that the government, as the focal point for CRPD implementation under Article 33(1), also has obligations under Article 4(3) of the CRPD to collaborate with civil society more broadly. It is necessary then to consider these two provisions together and approach participation through a more complex framework of assessment. Yet in the process of identifying indicators that could measure meaningful participation, it seemed sufficient to choose a smaller area to focus on. Therefore, the developed interviews and questionnaires focus mainly on monitoring the implementation of the CRPD instead of considering all areas of law
191 Ibid. 192 Ibid.
development, policy-‐making and decision-‐making.193 On one hand, it would have been beyond the capacity of this research project to gather comparable data on the involvement in law and policy processes and this covers a broad range of areas. On the other hand, the preliminary interviews showed that in cases where the government showed commitment in establishing a CRPD compliant, well-‐functioning monitoring framework, it is also willing to involve in policy processes the voice of persons with disabilities.
5.1.1 Challenges in applying participatory research methods
The research methodology initially aimed to involve some elements of participatory research. The main reason was to resolve the paradox of carrying out research on the participation of the disability movement but excluding them from participating in the project itself. It was also a clear intention from the very beginning to answer the central question of the present thesis by building on the direct input from persons with disabilities.
While not explicitly, the strong participatory nature of the CRPD would suggest involvement of the voice of persons with disabilities in research that aims to define success factors for their meaningful participation. As Walmsley and Johnson point out, research practices and academic disciplines are affected by social changes.194 It is also believed that research methods would similarly affect or even stimulate social changes. A more inclusive and progressive research method, therefore, could help to combat exclusionary patterns and stigmas and contribute effectively to the creation of a more equitable society.
Similar to emancipatory and action research, participatory research is an inclusive approach that challenges the location of power
193 It is beyond the scope of this thesis to provide indicators on this complex area. In-‐
depth analysis of all areas that fall under law development, policy-‐making and
decision-‐making in the context of civil society involvement should be subject to future research.
194 Walmsley, J. & Johnson, K. (2003), Inclusive Research with People with Learning Disabilities: Past, Present and Futures. London: Jessica Kingsley.
in the research process. 195 In contrast to traditional research methodology, participatory research is carried out by locals and builds on first-‐hand knowledge as the basis for research and planning. Participatory research has a ‘bottom-‐up approach’ and prioritises points suggested by the grass-‐root-‐level participants in the project. Applying Biggs’ typology to the current research project, the initial aim was to reach at least ‘collaborative’ participation: working with persons with disabilities on a project that was initiated by the researcher.196 The final stage of the typology would require a collegiate relation between the researcher and local people. Yet, in reality, it already presents a challenge to fulfil the lower levels of the typology.
It was realised at very early stages of the research that, as a result of initiation through an academic proposal, the research project does not fulfil the criteria to become a truly participative one.197 The aim then was to reach at least the collaborative level by involving leaders of the European disability movement in forming the main questions, the terminology and the direction of the research. When effective involvement in policy-‐making is described in later sections, the analysis is primarily based on what disability movement representatives shared with the researcher in the qualitative interviews. The aim is to avoid drawing conclusions from the researcher’s own remarks and to take as a baseline the first-‐hand experiences of persons with disabilities themselves when defining the set of criteria for effective involvement.
195 Cornwall, A. & Jewkes, R. (1995), ‘What is participatory research?’, Social Science & Medicine, 41 (12), pp. 1667–76.
196 Biggs defines four models of participation: the contractual mode means that people
are contracted to participate in the research; the consultative method is when participants are asked for their opinion and consulted by the researcher; in
collaborative participation researchers and local people work together on projects
initiated by the researcher; and in collegiate relation the researcher and local people work together as colleagues with different skills in a process of mutual learning. Participatory research is theoretically situated at the latter stage, but has rarely been achieved. See: Biggs, S. (1989), ‘Resource-‐poor participation in research: A synthesis of experiences from nine national agricultural research systems’, OFCOR Comparative Study Paper 3, International Service for National Agricultural Research, The Hague.
197 The research proposal was initiated by the investors of the DREAM (Disability
Rights Expanding Accessible Markets) EU FP7 Marie Curie Research project under the title: ‘Monitoring: European & National Monitoring of the UN CRPD’.