At the beginning of October, representatives of disabled people and their families from four continents gathered at an ENIL side-event to discuss the main challenges to the realisation of the right to live independently and be included in the community in their regions. The side-event took place in Geneva, during the Social Forum of the Human Rights Council. It was part of ENIL’s research project on the implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD).
The speakers included Ms. Bhargavi Davar (Transforming Communities for Inclusion – Asia), Ms. Ana Lucía Arellano (Latin American Network of Non-governmental Organisations of Persons with Disabilities and Their Families), Mr. Berhanu Tefera (African Disability Forum), Mr. Imed Ouertani (disability activist, Tunisia), Mr. Khalid Al-Naimi (Arab Federation for the Blind, Arab Association for Human Rights) and Ms. Theresia Degener (Committee on the Rights of Persons with Disabilities).
The event looked at how local culture affects the realisation of the right to independent living. It showed that despite the cultural differences, disabled people across the world face similar problems. For example, in many countries institutionalisation of disabled people is still widespread and new institutions continue to be built because they are seen as the best solution. The lacking or insufficient state support for community-based services is another common problem, which restricts the right of disabled people to independent living. Mr Tefera stressed that in a situation of inexistent state support, the independent living of the person depends on the financial situation of their family. Similarly, Ms Arellano noted that families in Latin America are forced to sell their houses and everything they have to ensure adequate support for their children. Thus, the lack of state support contributes to isolation and pushes disabled people and their families (further) into poverty.
One of the keys barriers to independent living, visible in all presentations, is the dominant understanding of disability as a medical problem rather than as a social and human rights issue. This understanding is shared by policy-makers and embedded in legislation. For example, Mr. Ouertani noted that the Tunisian legislation, is written ‘in passive voice’. This means that disabled people ‘can only be in position of passive receivers. So they receive health, they receive education but they … [are not put] in a situation where they can be active and build their own lives and decide for their own live’.
The medical understanding of disability is also shared by the community in general. Ms Davar pointed out that even where there are no laws, explicitly supporting institutionalisation, institutional practices are reproduced by the local community because of their prejudice – ‘there is still violence and exploitation and abuse at community level because the perceptions are the same’.
In her concluding remarks, Ms Theresia Degener underlined that although the medical model ‘might take different cultural shapes’ it means the same in every culture – ‘restricting disabled people to their impairment’. She also linked independent living to the general culture of accepting and valuing difference:
The local culture affects the realisation of the right to independent living in a way that if you live in a local community, which is a culture of discrimination and depression, and I mean not only to disabled people, but to other people as well, then independent living and living in the community cannot be realised as a human right. If you live in a global community, which has a culture of inclusion… for everyone, not only disabled people, then disabled people have a right to realise the right to independent living and living in the community.
You can read more about the event here.