“What Do I Really Get To Decide Myself?”

Self-determination and inclusion in the community in Sweden: Tools for bridging the gap between the rights for persons with disabilities in theory and in practice.

Over a billion people, between 10-15 % of the world’s population (WHO), and 2 million people (over 20 %) of the Swedish population have some form of disability (Public Health Agency of  Sweden). Because of the way our societies are organized, persons with disabilities are routinely hindered from enjoying their human rights. This was the main reason why the Convention on the Rights of Persons with Disabilities (CRPD) was adopted in 2006. For the same reason, work must focus on making the rights in the CRPD a reality for the 2 million persons with disabilities worldwide.

For all human beings, leading a dignified life means to be able to live a self-determined and independent life. It also means to be included in the community.  For an individual, a self-determined life means having the right to make decisions about your own life. To make choices big and small. To act on those alone and together with others, at home and in the community. Where to live, who to live with. To use city service, go to see a movie, a play or listen to a concert – of your own choice.

Anna Bruce, Senior Researcher at the Raoul Wallenberg Institute and expert on the CRPD, says:

“These are things most of us take for granted as part of our human rights. We are so used to being allowed to choose for ourselves, that we forget that it is by making these choices in our daily lives we become who we are and who we want to be. But self-determination and inclusion, these key features of a good life, are often denied persons with disabilities.”

For a person with disabilities there are many obstacles to leading an independent life.

“Attitudes, laws, policies and practices based on outdated ideas that persons with disabilities do not know their own good and are too ‘different’ to partake in mainstream life’, are typical barriers’. These also include physical structures grounded in conservative ideas; institutions housing persons with disabilities and separate schools for children and youth with disabilities.”
Anna Bruce, Senior Researcher at RWI

Making Self-Determination a Reality

Changing this is what Article 19 in the Convention on the Rights of Persons with Disabilities’ is all
about (CRPD). The Independent Living Institute (ILI) has been committed to promoting self-determination and inclusion in the community of people with disabilities since 1998. Article 19 is a key tool in this work.

In 2019, Independent Living Institute started the project ‘Article 19 as a tool’ together with the Raoul Wallenberg Institute. Part of the project analyses how well Sweden is realising the rights in Article 19.

Anna Bruce’s role in the project has been to translate the demands of Article 19, so that they can be applied directly onto the Swedish reality. She says:

“Evidence shows that persons with disabilities do not live the independent, selfdetermined lives in the community that the CRPD requires Sweden to ensure. But, without a broad and realistic gap analysis of the compliance of Swedish law, policy and practice with Article 19 we cannot use the CRPD as a tool for change. We need to bridge the gap between the CRPD and the lives people are allowed to live. Therefore, the gap analysis is the first step.”

A Self-Assessment Tool for Duty-Bearers and Rights-Holders

Another part of the project is to develop indicators. These indicators, which consist of key questions, are to be used by different duty-bearers, such as local governments, to assess their operations against the demands of Article 19. This way they can find out how well their operations assist in making persons with disabilities lead self-determined lives and how well they ensure them inclusion in the community.

“This is a hands-on tool. A reference group with representatives from municipalities and other public and non-governmental organisations participate in its development, to ensure both relevance and applicability.” says Anna Bruce.

General obligations

Human right indicators are based on the rights and obligations in Article 19. But, like all international human rights law, these rights and obligations are general in nature. To localize these in Swedish reality has been a key part of the project.

To make this possible, Independent Living Institute has run workshops with groups of persons with disabilities whose self-determination and inclusion in the community are dependent on the operation of the municipalities. Thanks to this, Independent Living Institute, through their network of rights holders, has ensured that the indicators mirror the barriers to self-determination and inclusion in the community in Sweden, as they work in practice.

“It is essential that people, whose rights enjoyment will be measured, have participated in the project and contributed to formulating these indicators”, says Anna Bruce, “We need to come closer to people’s experiences than existing measuring tools do. After all, we must focus on things that matter for real in people’s lives.”

“The basic idea behind the project came from the realization that norms, including international human rights, are not materialized by themselves. Through active measures including legislation, strategic litigation and long-term determination to ensure the rights may the desired social change that is the intention behind the norms actually materialize” says Ola Linder, project leader at the Independent Living Institute. “The work to map and analyse state obligations and framing them in Human Rights Indicators has only been possible through the close cooperation we have with the RWI.”

Other users of the indicators are persons with disabilities themselves. By including indicators for individual self-assessment, persons with disabilities can use these to see if and how they are enjoying the self-determination and inclusion in the community that the Article 19 promises.

This is one of the innovative features of the project:

“Indicators for individual self-assessment are in line with the goal of direct empowerment of rights holders in international human rights law”, says Anna Bruce. “But the idea came from ILI, whose rights-based work and focus on the voice of rights holders preceded the CRPD and now joins forces with it. This is where RWI and our expertise of international human rights law fits into the work for change in Sweden.”

More to read: 
The Right to Assistance 

THE RIGHTS OF PERSONS WITH DISABILITIES AND OLDER PERSONS IN A PANDEMIC: FINDINGS FROM TWO STUDIES CONDUCTED IN CHINA

The Legal Clinic:  Opening the ‘Doors of the Academic Castle’

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