Inkeri Lahtinen, Project Manager, Desk Officer, Finnish Association of the Deaf
In 2013, ANAD and FAD put forward an initiative to the Albanian Ministry of Social Welfare on conducting a statistically valid qualitative survey on the deaf population in collaboration with the Albanian Institute of Statistics. We wanted to ensure that the survey would be conducted in extensive co-operation with the authorities and that it would be carried out solely by deaf interviewers. A written survey automatically excluded respondents with weak or no reading and writing skills. Even in a survey conducted with the help of (hearing) interpreters it was not possible to fully ensure that the respondents would understand the questions or that the interpreter would understand the respondents due to varied linguistic abilities caused by different growing environments and educational backgrounds. (There are also only three interpreters available in Albania.)
FAD had previously conducted a survey in collaboration with the Kosovar Association of the Deaf, in which the living conditions and realisation of the linguistic rights of deaf adults were examined from the perspective of the CRPD articles. Our intentions were the same with the Albanian study, but we also wanted to refine the method further. FAD drew up a plan and invited an experienced signer and researcher from the Humak University of Applied Sciences to join the study.
The aim was to map out and analyse the mechanisms that contribute to linguistic inequality through the survey questions. The results should serve to provide a basis for concrete recommendations for policies and measures to improve the situation, as well as for co-operation between different authorities to develop services in sign language (e.g. teaching, access to information and interpreting services). The need for such data produced by deaf people themselves has also been stressed by the Disability Data Advocacy Toolkit published in 2020 by the International Disability Alliance & al.:
"Lack of data can be a large obstacle in disability-inclusive policymaking and programming. Lack of data on disability also increases marginalization and failure to address the challenges and discrimination encountered by persons with disabilities. Without data, we cannot know where a country stands concerning the implementation of the rights of persons with disabilities. We are not able to show where progress has been made and, equally, we are not able to show where gaps exists. Without data, we cannot compare countries against other countries or different different districts with each other to see how they are making progress on implementing rights. If persons with disabilities are not counted, then they don’t count. As a result, effective policymaking will suffer and persons with disabilities will fall off the statistical “map.” Evidence-based data on persons with disabilities at the national and global levels is instrumental in identifying the policy gaps and challenges faced by persons with disabilities that can support policymakers to address these gaps and amend existing policies and regulations.”