Blog: How can we make independent living a reality for disabled persons?

Being disabled myself (blind from birth) and working extensively on disability issues, it may seem surprising that I have never written for this platform on the topic of disability in my four years as a Young European Ambassador. The 5 May celebration of European Independent Living Day provided me with a good opportunity to discuss the following question: what does ‘Independent Living’ mean? What kinds of issues do disabled people face in Georgia? What does the European Union do to promote inclusion and the rights of persons with disabilities?

European Independent Living Day has been celebrated annually since 2014, when the European Network of Independent Living (ENIL) proposed the celebration in commemoration of the 25^th anniversary of the network’s establishment. Its purpose is to raise awareness of independent living and to bring together people with disabilities and their supporters across Europe.

To celebrate this date in Georgia, two NGOs, the Batumi-based Changes for Equal Rights and the Coalition for Independent Living, organised a panel discussion in the city of Batumi in the framework of the EU-funded project, Civil Society for the Rights of Persons with Disabilities. This project aims to improve access to justice for persons with disabilities, while combating disability-based discrimination.

As a part of this project, advocacy groups have been established in Tbilisi and in two Georgian regions of Adjara and Kakheti, where they conduct awareness-raising sessions with local communities. The project focuses on developing the capacity of civil society organisations to enhance access to justice and eliminate discrimination against persons with disabilities, including women with disabilities and those belonging to ethnic minority groups, through effective advocacy and the development of legal services.

The project has set up three Disability Advocacy Teams (DATs) in Tbilisi, Adjara and Kakheti, which identify and study cases of discrimination, with a priority focus on the intersection of disability, ethnic origin and/or gender discrimination. The DATs provide legal advice to all interested parties, seek evidence in the case, prepare a lawsuit, and ensure that persons with disabilities are represented in court. The regular legal clinics held by the DATs help to protect the rights of persons with disabilities individually, as well as to enrich disability case law through strategic litigation.

The initiative also plans to develop a judicial training module on the UN Convention on the Rights of Persons with Disabilities, with the involvement of an international expert and in cooperation with the High School of Justice, which trains judges before they are sworn into service and assigned to courts. it will also explore the opportunities for integration of the module in the continuous training programmes of the High School of Justice.

The project will also assess the needs of the regional disability organisations and plan relevant training and support activities based on this information.

The European Union ratified the UN Convention of the Rights of Persons with Disabilities (UNCRPD) on 23 December 2010. It was the first regional organisation to do so, while the UNCRPD was the first international human rights treaty signed by the union. The European Commission is also allocating funds to be used for better policy planning by state authorities on disability-related issues through the UN Development Program (UNDP) in Georgia. The UNCRPD was open for ratifications in 2006 and came into force in 2008. It was designed with the widest participation and debate involving UN member states, legal scholars and other professionals, but most importantly, persons with disabilities themselves. It is a ground-breaking international human rights treaty, which says that disability results not from a person’s medical condition, but from the inaccessible environment, lack of assistive devices and support services, as well as attitudinal barriers.

The reason why I am using two different terms – “disabled person” and “person with disabilities” – interchangeably, is because there is no consensus on which one is less discriminating. The UNCRPD calls us “persons with disabilities”, with the philosophy that a person should be put before a disability. People with disabilities are people first. ENIL, however, speaks of “disabled persons”, with the reasoning that people are disabled by their environment, by attitudes, and by the lack of assistive devices and services.

Independent living is a complex concept. According to Article 19 of the UNCRPD, persons with disabilities have the right to freely choose where and with whom to live, and are entitled to the services that  will assist them in implementing their choices. As one of the presenters at the 5 May panel rightly noted, we all rely on each other to become more independent. Therefore, living independently does not mean living alone or being completely on your own (in today’s world, everyone including the non-disabled, become increasingly more interdependent), it means having the possibility of free choice, and assistance in following it.

The Panel was attended by over a hundred persons with disabilities, their family members, the representatives of organisations of persons, including women, with disabilities, and organisations working on disability issues from all over Georgia. Mikheil Sarjveladze, the Chairperson of the Human Rights and Civil Integration Committee of the Parliament of Georgia, Mzia Giorgobiani, Deputy Minister of Regional Development and Infrastructure of Georgia, Rati Ionatamishvili, a Member of Parliament of Georgia who himself has a disability, the Mayor of Batumi, and other government agency representatives spoke alongside young activists with disabilities and Independent Living Centre Leaders.

The theme of the event was ‘Independent Living of Persons with Disabilities, Challenges and Support Services’. At the meeting, the disabled activists and the leaders of the Independent Living Centres discussed the philosophy of independent living, the challenges that persons with disabilities face, and the importance of Independent Living Centres and their core services, including peer support (disabled-to-disabled person, parent-to-parent), awareness raising, and legal representation before courts and other public authorities.

Despite all the work done so far, be it with donor support or without it, a number of issues still remain: inaccessible physical environment and information sources for persons with mobility and sensory disabilities. The deaf stressed the importance of state structures having sign language interpreters. Blind persons are not given the opportunity to sign documents in the way they prefer and are forced to entrust others to sign on their behalf. Some people have trouble taking out bank loans due to red tape. Some children with disabilities cannot go to school, as there is no accessible transportation provided, while the inclusivity and quality of education, especially for children and youth with disabilities, is still highly debatable. Bus stops are not announced on public buses, which are officially described as accessible. Much stigma still prevails against persons with disabilities. Medical professionals still talk about the health of patients with disabilities and even of their children to their non-disabled accompaniers, guides, family members or interpreters.

Persons with disabilities stressed the importance of the personal assistance programme, which is being piloted only in Adjara region, while for the rest of Georgia it is set to become available only in 2025. Due to the lack of personal assistance services, parents and family members of children and adults with disabilities are not able to work, which worsens the socio-economic situation of families. Besides, persons with disabilities often depend on family members, not only in completing certain activities, but, more importantly, in the choices they are allowed to make. Finally, older persons with disabilities are forced to choose between retirement and disability benefit, while they have needs and extra costs stemming from both their age and disability.

The panel once again demonstrated the importance of disability advocacy to improve the everyday lives of all persons with disabilities, as well as the political will to take over the financing of pilot initiatives funded by various projects to ensure their sustainability. The improvement of the human rights situation for persons with disabilities, along with the local efforts by persons with disabilities themselves, their family members and organisations requires external motivation and continuous efforts from the international community.