In May 2020, the International Foundation for Electoral Systems (IFES) interviewed members of the Association for Promotion and Development of Inclusive Society (INKLUZIVA) to learn more about their work to advocate for a disability-inclusive response to COVID-19 in North Macedonia. INKLUZIVA aims to foster an inclusive society by advocating for equal rights for people with disabilities and other marginalized groups. The transcript of the interview is below. It has been edited for clarity.
Bojana: I have been a member of Inkluziva since 2008, when the organization was founded, and as a person with [a disability], I have received support from Inkluziva throughout my schooling, starting from high school and still continuing these days when I started my own business. For me and other people with disabilities, especially young people, Inkluziva offers support in advocating for our rights and directs us to where we should go to report when we experience discrimination. Inkluziva helps us to access and [communicate] with institutions that provide services to citizens.
Darko: It could be said that people with disabilities [experience greater] isolation given the inaccessibility of many infrastructure facilities. The facilities do not offer access to persons with disabilities, so many of them live in isolation.
COVID-19 aggravated this situation because people with disabilities are a high-risk category of citizens who [often have health conditions] related to their disability, such as diabetes, kidney disease and high blood pressure. The psychological condition of people with disabilities, especially young people with disabilities, has also deteriorated during the pandemic because they live in constant fear of the pandemic and how it might affect them.
Unfortunately, the institutions made only minimal efforts to address the aforementioned needs of persons with disabilities and there were no measures that were tailored specifically to the needs of persons with disabilities. People with disabilities were sometimes not targeted at all—for example, the Government Cabinet enacted a measure of psychological support for parents of persons with disabilities, but that measure did not include people with disabilities themselves.
Blagica: All our activities were part of the advocacy for equitable participation of people with disabilities in the measures enacted by the central or local governments. This is of particular importance when Kumanovo was quarantined because it was an epicenter of the epidemic.
Inkluziva works on an individual level and provides ongoing support, information and guidance to persons with disabilities about ways in which they may exercise their rights, or demand action if denied.
When the ban on movement was introduced, it applied both to persons with disabilities and their personal assistants, who have a major impact on the functionality of persons with disabilities. Inkluziva urged the [relevant] institutions and obtained permissions for free movement of persons with disabilities and their personal assistants. In this way, it contributed to the quality of life of people with disabilities, but also to opportunities for personal assistants to continue working and receiving [an] income.
Blagica: For example, when a state of emergency was declared and a curfew was imposed, the needs of persons with disabilities were not taken into consideration at all. Inkluziva intervened with the [relevant] institutions to allow time slots for free movement for persons with disabilities, as well. This activity bore fruit and the Government Cabinet changed the protocols for free movement. Persons with disabilities were no longer subject to restrictions and could move around freely.
At the local level, the municipality started distributing social packages through the crisis management headquarters, but unfortunately persons with disabilities were not included, even though they are the most vulnerable category. Inkluziva intervened and shared contact information so that this category of citizens could also receive the packages.
Darko: Through IFES programs, we have strengthened our advocacy capacities, which we are now able to apply in a substantial way. We also advanced as an organization in terms of the methodology of working with persons with disabilities, especially in the election process. This will be of additional benefit to us because the country is about to have parliamentary elections that will be held after the state of emergency is lifted.
Blagica: Persons with disabilities require constant communication and interaction because that is the only way to establish the necessary trust. On the other hand, the organization continuously monitored all measures and instructions to the citizens related to the pandemic. Thus, it was able to react immediately and demand that the measures be adjusted to [take into consideration] the needs of people with disabilities.
We were glad that the institutions were open to cooperation, but there is still a lot of room for improvement and advancement.
Bojana: Due to the pandemic, all activities—including election preparation activities carried out by the Inkluziva observer team and voters with disabilities—had to be put on hold. It will be difficult to involve persons with disabilities in the election process because there are many unknowns regarding the organization of the process and how to ensure that protection and social distancing measures are respected in full. We don't know if there will be sufficient protective equipment, sanitary gels and gloves available for election day, and how safe it would be for persons with disabilities to come out to vote.
If persons with disabilities do not go out to vote, this will be a step backwards for everyone, including Inkluziva and its commitment to the active participation of persons with disabilities in all processes in society, including elections.
Tanja: Introducing electronic voting is something that we think is most appropriate at this moment. But that would require major changes in the electoral system, and more time would be needed to introduce it.
We believe that compliance with the health protection and social distancing measures is quite necessary for all election activities. We at Inkluziva are aware that this would require additional human and financial resources because now the training groups should be smaller and the rooms should be larger, and resources for such changes are neither planned nor available.
Unfortunately, a large number of people with disabilities are forfeiting opportunities to participate in activities because of fear, but we believe that this virus will be with us for some time, and thus even more efforts should be devoted to establishing decent living and working conditions for all, especially for persons with disabilities.