On Sunday July 21 2024 Adolf had an accident that led to the stopping of his heart. Adolf is loved by many, respected by even more. He with others brought the Independent Living philosophy to Europe and he introduced it to Sweden from the United States in the 70s. Adolf lifted the concept of personal assistance with his endeavors changing disability policy in Sweden and in many other countries. People with disability grew stronger realizing they had the right to equal rights and self -determination. Adolf founded the Independent Living Institute, ILI in 1993. Before this he mobilized people and founded the STIL project in the 80s with others who also needed personal assistance.
Project 81
As with the USA, the concept of disabled people controlling their own support system started with a small group of disabled people being given money to employ their own personal assistants to live a fulfilling life in the community. But this time the group were not university students, but residents of a residential home in Hampshire, England. Project 81, the International Year of People with Disabilities, appealed to the right-wing neoliberal government at that time, which favoured self-help and self-responsibility for one’s own welfare. Here, disabled people were being taken from dependency on others in expensive care homes, to the independence of their self-directed support in the community.
The Law on Personal Assistance (PAA) was adopted in Bulgaria in 2018 after a long struggle by several groups of people with disabilities. An initial initiative was the Center for Independent Life (CIL) - a non-governmental organization of disabled people with over 20 years of expertise in protecting the rights of disabled people and their empowerment. In 2009, a group of people with severe physical disabilities, with the support of lawyers, studied the European and world experience and, especially that of Sweden and Norway, and developed a draft of the PAA. In it, they combined the best practices from the experience of other countries and complied with the current Bulgarian legal norms.
What is Peer Support and why is it important in the context of Independent Living
Peer support is one of the pillars of Independent Living and an essential element for the self-determination of disabled people.
Peer support can be described as the help and support that people with lived experience can give to other individuals in a similar situation. For example, it can refer to support provided by someone using personal assistance (PA) to another person using a PA. Or, to somebody who has lived in an institution in the past to other people still living in institutions. This support may be social, emotional or practical (or all of these), and can be life changing.
Avskaffade institutioner på agendan
Den femte maj firas varje år Independent Living Day och 2023 uppmärksammades detta bland annat med en konferens i ILIs lokaler i Farsta utanför Stockholm. Det var ett tjugotal åhörare som samlades för att lyssna på föreläsningar, ställa frågor och diskutera ämnet avinstitutionalisering i Sverige.
- Friheten att bestämma med vem, var och hur en vill bo – Avinstitutionalisering/Deinstitutionalization (DI) i Sverige (sidan på svenska)
- Freedom to choose with whom, where and how you want to live – Deinstitutionalisation (DI) in Sweden (page in english)
Stiletten var STIL-kooperativets organ som gavs ut i pappersform fram till 2011. 1986 kom dåvarande verksamhetsledaren Bengt Elmén på idéen att samla våra frekventa utskick till medkämparna och medlemmarna och allmänheten i ett nyhetsbrev med detta vassa namn. Stilettens uppgift var att hålla dem informerade om
In our project Article 19 as a tool, we welcomed Alex Caputo Janhager as an intern. As a part of his internship and introduction to Sweden, he wrote a paper on the Independent living Institute and its activities, the Swedish political system and Sweden’s relation to international human rights norms. The paper is available at the end of this post.
M. Miles, with C. Miles, West Midlands, UK