Social Structures
Symposium
Author: Rebecca Daniel – PHD Student, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University
The IDA Global Survey on political participation of Organisations of Persons with Disabilities (OPDs) was launched earlier this year and will remain open until the end of 2021. It is conducted as part of a PhD research project undertaken at the ALL Institute and discussed below on the occasion of the International Day of Persons with Disabilities.
The human right to participation of persons with disabilities through their representative organisations is clearly stated in the UN Convention on the Rights of Persons with Disabilities (UNCRPD). Articles 4.3 (on participation of OPDs in implementation of the UNCRPD overall) and 33.3 (on participation of OPDs in national implementation and monitoring of the UNCRPD), as well as General Comment No 7 specify this right. As far as the United Nations (UN) are concerned, participation of OPDs is a crucial principle to be considered throughout the activities of the UN, in line with indicator 5 of the United Nations Disability Inclusion Strategy (UNDIS) on consultation of persons with disabilities.
However, as one of the most marginalised groups (compare e.g. WHO World Report on Disability, WHO – Disability and Health and United Nations Office for Disaster Risk Reduction), persons with disabilities are in many ways excluded from public decision-making. Their full and effective participation in all decisions concerning their lives is yet to be realised (compare e.g. Bridging the Gap: The unsteady path, IDA: Increasingly Consulted but Not Yet Participating). Public programmes, policies, plans and projects, insofar as they consider participation, are all too often addressing members of civil society as beneficiaries or consumers of services instead of citizens (Andrea Cornwall).
To collect broader evidence and analyse the reality of OPD’s engagement in decision-making from their own perspective, a “Global Survey” on OPD participation in policies and programmes was developed in 2018 by the International Disability Alliance (IDA) with the support of Maynooth University (McVeigh et al.). It is part of IDA´s strategy to hold decision makers, at local, national, and regional level, accountable for their commitments under Articles 4.3 and 33.3 of the UNCRPD, as well as in line with General Comment No. 7.
The IDA Global Survey takes stock of the participation of OPDs in programmes and policies of local, national, regional, and international decision makers by assessing OPDs’ perceptions of the quality, depth, scope, and relevance of their own engagement with governments, funding agencies and the UN. As it is meant to become a long-lasting tool to measure change of the perception of OPDs, the survey will be conducted regularly (so far in 2018 and 2021). The first iteration of the Global Survey will remain open until 31 December 2021. All members, staff members or volunteers from an OPD are invited to participate in this survey, which is available in 10 different languages (including International Sign Language) on IDA´s website. The Global Survey was converted in plain language, and an Easy-Read version was created and approved by self-advocates with learning/ intellectual disabilities.
The survey is conducted through a survey platform called iData, which was created for IDA between 2019 and 2021. The platform was tested with a diverse group of 71 persons, including persons with different disabilities and without disabilities from all around the world, of which 25 came from underrepresented groups and 35 were women. iData includes a range of accessibility features that respond to the preferences of users, such as different contrast options, adjustable font size, a read aloud function, or an automatic saving function. It guarantees that responses made by a participant are automatically saved and the survey can be continued later from where the respondent had stopped. Ultimately, the functions offered by iData follow the principles of universal design and aim at ensuring a high level of informational accessibility for persons with disabilities, in line with the principles of the UNCRPD, including but not limited to the Global Survey.
The first Global Survey has shown that participation of persons with disabilities, through their representative organisations, is increasing overall. However, their participation remains insufficient with regards to the standards set by General Comment No. 7, as well as Articles 4.3 and 33.3 of the UNCRPD. Participation of persons with disabilities is for example quite unequal across the different constituencies of the disability rights movement. Additionally, OPDs tend to not be consulted on all issues which are relevant for them. More findings can be found in the first Global Survey´s final report by IDA “Increasingly consulted but not yet participating” and in a publication by McVeigh et al.
Findings of the2nd Global Survey will, amongst others, be used for the Global Disability Summit (GDS), which will be taking place in February 2022. This event will be an important opportunity to discuss the preliminary findings of the Global Survey and the participation of OPDs in general. In the meanwhile, the survey remains open until the end of the year and OPDs are still very welcome to participate. This will enrich and diversify the findings and allow for more comprehensive recommendations to be made to decision-makers at local, national, regional, and global level. Moreover, it will support OPDs worldwide in better understanding how to bring about positive change and meaningful participation of OPDs in decisions that concern the lives of persons with disabilities.