Independent Living Institute (ILI) works to promote opportunities for disabled people for more personal and political power, self-determination, full participation and equality through information, education, lobby and project activities. During 2018 ILI carried out several projects to reach its goals and visions described in this document. All the projects have their own webpage, facebook page and disseminate newsletters.
ILI faced a great loss during 2018. Kalle Könkkölä, a board member of ILI, passed away in September after a short illness. Kalle was a strong and important leader of the Independent Living Movement with contacts in most countries around the world. Kalle is missed for his ideology, energy and innovative ideas.
The Law tool as a tool works to increase the legal capacity of the disability movement in Sweden by gathering expertise, educating stakeholders and defending human rights for people with disabilities. The purpose of the project is to ensure that the rights of people with disabilities are better implemented by using the law and case-law as tools against individual and structural discrimination.
The project cooperated closely with the Swedish Disability Federation’s project "From Talk to Action” and with the non-profit association "With the law as a tool" that takes members’ legal cases - to court if necessary. The project also worked together with The Swedish Disability Rights Federation, Apply Human Rights, DHR, STIL, and The Swedish Association for Survivors of Polio, Accident and Injury (RTP) among others. The project is funded by the Swedish Inheritance Fund.
A joint reference group meeting with the project "From Talk to Action” was held on March 20 and discussed, among other things, the future financing of legal action to be carried out by the disability rights movement. Further contact was made with other disability associations - such as the Autism and Asperger Federation, Dyslexia Association, the Swedish Association of Hearing Injuries and the Swedish Association of the Visually Impaired.
During the year the project cooperated with Talerättsfonden (the Anti-Discrimination Fund) and Apply Human Rights, with among other things, a joint stand at Juristdagarna (Lawyer’s-days). Collaboration has continued with several of the country's anti-discrimination agencies. The law as a tool has also been in contact with other Inheritance Fund projects, for example “Vi ska med”, about the labour market situation for young people with deafness and deafblindness. Talks were held during the year with the Raoul Wallenberg Institute, in particular fora new project application for “Article 19 as a tool“ - Convention on the Rights of Persons with Disabilities (CRPD).
Emil Erdtman, Ola Linder, Maria Chöler och Anna Zotééva have worked in the project. Interns were Anna Zotééva, Csilla Gradwohl and Erik Sandström. Anna conducted a study on local council building regulators and their handling of “easily remedied obstacles” and wrote an undergraduate thesis about a Swedish Human rights organisation. Csilla Gradwohl wrote her master thesis about insufficient accessibility and Erik Sandström wrote a report detailing anti-discrimination agencies' view of functional discrimination.
In the spring of 2018, the book “Combating Functional Discrimination and changing society with the law as a tool” was produced (in Swedish only, you can download it free here). It was created as an e-book and printed in 200 ex., most of these were sold. The homepage lagensomverktyg.se has had a steady increase in visitors. 10 key people have been interviewed and a young guest writer wrote three engaging reports about discrimination.
Anmälningstjänsten helps individuals and organizations to report cases of discrimination to the Equality Ombudsman and, when appropriate, the respective municipal building authority. During 2018 25 incident reports were documented on the reporting service and the site had about 5 000 visits by about 4 000 persons. During the year the service’s technical potential was expanded so now it is possible to follow up on a reported location via Google street view. The function is not public but the person who made the complaint can give its address and click on the GPS-position, then it will be possible to see if the inaccessible location has been rectified. Some complaints contained sensitive private information and these were not published. During the year ILI strongly criticized the Parliamentary Ombudsmen (Justitieombudsmannen) and a number of Swedish Municipalities that took far too long time to handle and respond to cases of easily remedied obstacles, with the longest taking 13 years.
Disabled Refugees Welcome is a three-year integration project carried out by the Independent Living Institute. The project is financed by Allmänna Arvsfonden and at the end of 2018 the project has been running for 16 months. The purpose of DRW is to develop new methods to better the conditions of the receiving and integration of disabled newcomers. During the project the target group’s needs will be documented and activities developed that can be incorporated in the natural migration process.
DRW started in September 2017 with 10 employees all from different countries. Julius Ntobauh who had the idea of the project along with Adolf Ratzka are both employed within the project. Until December 2018 the project team has developed different methods in order to reach the project goal of having a society with equal opportunities fora life with Independent Living no matter the function capacity or number of years in Sweden.
Through the project webpage, and the social media channels, information has been spread, as well as via outreach in public squares, at conferences and to important actors in the society. Material has been produced and translated to some languages. A contact base is constantly being developed. More than 60 case studies of the target group newly arrived have been completed. The project has been interviewed in the media several times. DRW have been active on social media. See Publications below for statistics.
DRW carried out many activities during 2018. The project team both received and made themselves study visits spreading information about the project, exchanging ideas and developing cooperation with other organizations. DRW has held round tables, theme days, open houses amongst other activities. Several activities have been co-organized together with BOSSE stöd och kunskapscenter.
International Disability Rights Defenders Network (IDRDN) and Disability Rights Defenders Network (DRDN) is an international network aiming to spread information and experience about how countries can use the law as a tool to better the life situations of disabled people.
Within the framework of IDRDN, an international conference, a “match” and a network meeting were held during May. The project was carried out in collaboration with “the Law as a tool” organisation (see other activities below) and was financed by Bente Skansgård's Independent Living Fund, STIL and the Nordic Welfare Center (the latter through “the Law as a tool” organisation).
May 28-29 - Match for IIDL: Jamie Bolling led a match on the theme "using the law as a tool" in collaboration with the International Initiative for Disability Leadership. Participants were involved in the design of the workshop and came from, among other places, Australia and Canada. The “the Law as a tool” organisation participated and the participants contributed their own experiences.
On May 30, the Independent Living Institute celebrated its first 25 years with an international conference “Using the Law as a Tool for Social Change” - with support from the Nordic Welfare Center, Bente Skansgårds Memorial Fund, ULOBA, STIL (Founders of Independent Living in Sweden) and ENIL (European network for independent living). The conference focused on how the disability movement and lawyers can collaborate in strategic litigation. About 80 people participated from the Nordic countries, Estonia, Bulgaria, Israel, the USA and more. Programs, speaker presentations, powerpoint presentations and Erik Tillander's photos can be found on the conference page together with the conference report.
The Disability Rights Defenders Network had its inaugural meeting on May 31. In addition to exchanging experience and discussing what constitutes discrimination, the meeting established that there is a need to compile a list of legal cases in the global network. Although few case are processed in each individual country, knowledge of the total amount of cases can increase the tendency to use strategic litigation. Selina Griesser worked with the network until August. The purpose of the network is to spread and deepen the legal expertise about disability rights among individuals with disabilities, their organizations and lawyers. The closed Facebook group Disability Rights Defenders was started to share experiences, methods and advice. Content from the Facebook group is then summarized in a newsletter four times a year. Subscribe to the newsletter via this link
PA-tips (Personal Assistance tips) is about gathering, documenting (by text, videos and photos) and spreading tips and examples that personal assistance users and their assistance have developed in relation to different assistance situations. The tips provide knowledge on how to best promote opportunity for disabled people to live active and well-functioning lives with personal assistance as well as increasing self-determination.
According to the Independent Living movement, people with disabilities are the best experts on their needs and should therefore learn from and help each other to change their situation. By becoming a more informed and better supervisor for their assistants, assistance users can improve their personal assistance and increase their possibilities for self-determination in daily life. This requires, among other things, experience and knowledge of practical and organizational solutions, such as the ways in which assistants can assist in particular situations. The idea is not to show "the best" solution for assisting users - we are not a homogeneous group but individuals with unique conditions, needs and preferences – but to suggest several solutions that assistance users can test and be inspired by in developing their own approaches. Assistance Tips encourages assistance users, their relatives and assistants as well as professionals involved in assistance to improve service quality and assistants’ working environment. The project's website is patips.se and can also be found at Facebook facebook.com/PersonligAssistansTips/.
Until December 2015 the project had project funding from the Swedish Inheritance fund and has after that continued on a smaller scale.
Assistanskoll has continued to grow in content, scope and reach after the project funding from the Swedish Inheritance Fund ended in 2010. Assistanskoll provides information, facts and numbers, analyzes and advice to assistance users, their families and assistants in the selection of assistance providers. Assistanskoll keeps the public up to date on the rapid changes that take place in legislation, case law and market development.
Assistanskoll is also a tool for municipal administrators to disseminate information and advice to assistance users and their families. By the end of 2018, 198 personal assistance providers participated in Assistanskolls comparison services (194 non-municipal and 4 municipal). In addition, 43 personal assistance providers that did not present their information. Assistanskolls website had about 849 000 page views during the year (809 000 in 2017 – an increase of 5 %). This exposure makes the Assistanskoll website and newsletters an interesting forum also for advertisers who now cover a big part of Assistankolls ongoing costs.
Assistanskoll’s newsletter, edited by Kenneth Westberg, is published once a month and has achieved a market leading position in the surveillance of the development of personal assistance in Sweden. Our articles and other information are often quoted. The newsletter reaches 5 600 e-mail addresses, many of which are assistance providers and LSS administrators. Other subscribers are assistance users, their relatives and assistants, disability organizations and their journals, unions, authority officials and politicians at all levels.
There is a growing interest in our information pages and guides. for example our comparison of collective agreements, the guides ”Work as an Assistant”, “Payment for personal assistance in inconvenient working time“, “What are Personal Assistants paid?“, “Recruiting Personal Assistants“, “Organizing Your Own Assistance“ and “Preparing Yourself for Your Assistance Assessment“ have become very popular.
Assistanskoll also has a comprehensive page of statistics on, for example, the Swedish Social Insurance Agency's reassessments, costs of personal assistance and how many assistance users that have chosen private companies, municipalities, cooperatives etc.
Examples of what happened within Assistankoll during the year:
ILI:s online full-text library still offers authors publishing, exposure, and secure archiving of their work, such as articles in scientific journals, reports, manuals and lectures on Independent Living and related subjects. Presently available in the searchable library are over 600 documents, most of which are written in English, about 200 in Swedish and 100 in other languages, mostly German, French and Spanish. We have, for example, a number of bibliographies which British social scientist M. Miles asked us to publish, among other themes, on the responses to disability in Asian cultures. PA-network disseminates personal assistance information in Sweden through articles and summary texts in English, as well as information on the situation of personal assistance users in other countries. We often receive appreciative comments from readers in different countries and the correspondence with the readers also include giving advice on the topics of the articles.
During the year ILI organized a number of conferences, seminars and trainings. ILI:s personnel also participated in other stakeholders events. Here given are many of the activities:
The Law as a Tool Association is a non-profit membership based organisation started in 2015 through the initiative of among others ILI and running under its own direction. The association has the same name as the ILI project and their activities complement each other. The association takes on members discrimination cases and if necessary takes these to court. In addition the association raises awareness about the rights of disabled people and gives advice and information on discrimination based on disability. ILI has during the year contributed to the administration support of the association.
During the year the association has in six cases sued in court and investigated ten more cases. The association litigates members' discrimination cases with support from lawyers and unpaid lawyers or law students who can try their hand at legal cases. Students have, for example, studied cases involving insufficient accessibility at postal agents and below par wage increases at the employment service. Another case was about a lack of active measures to prevent discrimination at the police authority.
The association's annual meeting was held on April 19th. During the year, GDPR entered into force and the association adopted its own integrity policy. On the occasion of a research report by, among others, Maria Grahn Farley, Department of Law at Uppsala University, on March 19, a seminar was held on norm hierarchy and treaty-conformant interpretation in Sweden. Andrea Bondesson, lawyer in the project “Från snack till verkstad” at Funktionsrätt Sweden, explained, among other things, that if no real norm conflict exists, Swedish law must be interpreted in the light of the convention (treaty-conformant interpretation).
On November 7, based on two legal cases, we discussed how we can get better public transport using strategic litigation. After the DO laid aside Lars-Göran Wadén's case, DHR took it - as far as the High Court - resulting in a win in the Gävle District Court. The other case was about the lawsuit filed with Örebro District Court against the region and the bus company regarding missing bus stop announcements on the buses in Örebro. KFO hosted the seminar which was arranged together with the Swedish section of the ICJ (international commission of Jurists).
The association has filed a lawsuit in a case where a person with disabilities was denied fulfillment of an employment agreement on the grounds of the person's use of an assistance dog that the person needs to compensate for their disability. An employee of the Police made a report to DO with the support from the association concerning deficiencies in the police department's efforts regarding active measures against discrimination. On February 8, the Swedish Association of the Deaf and the Swedish Association of the Deaf youth section (press release) in collaboration with the association, submitted a complaint to the UN Committee on the Rights of Persons with Disabilities regarding Richard Sahlin. Law & agreement wrote about the case in no. 2/2018 and Ola Linder commented on it in the article: Jag var för dyr forSödertörns högskola. The association has supported the Hörselskadades riksförbund (HRF) working the lawsuit against a conference facility that charged extra foran audio induction loop which did not work. October 25-26, 2018, Susanna Eriksson and Ola Linder from the association participated at the Faculty of Law at the University of Maastricht, the Netherlands, on the Convention on the Rights of Persons with Disabilities (CRPD) in courts of law.
Through our long joint work with other organizations to expand and defend our civil rights and increase our concrete opportunities to live as others, ILI has built up good contacts within Swedish civil society in our area. With this broad network, we have easily been able to find co-applicants for pre-project applications and initiated cooperation. We also have good international contacts through our long-standing commitment to the international Independent Living movement within Disabled People's International and ENIL, the European network for Independent Living, as well as through many collaborative projects and mutual exchange of experiences.
ILI has over the years become an international information and contact hub, which has helped us expand our network and deepen our cooperation with other organizations. In this way, we, together with many other organisations, have been able to contribute to an increased pace of development in the disability area in a number of countries in terms of policy for accessibility, personal assistance, technical aids and employment. The questions may concern projects, literature sources, contact mediation with other organizations and experts, or the concerns individuals who need support and advice.
Among our workers there is a rich range of skill and experience, many have their own experience of disability, a good gender balance and age span, and coming from many different countries. Most have worked part time, some only during short periods and some as interns. During 2018 the following people worked at ILI:
In addition, work has been carried out on a consulting basis and through short-term employment / freelance assignments.
In addition, ILI's activities were funded by banner advertisements on Assistanskoll.se and private donations.
Adolf Ratzka, Stockholm, in 1983 Adolf introduced the Independent Living philosophy to Scandinavia, founder of STIL and its chairperson until 1995, ENIL’s first chairperson from 1989 - 1992, founded, together with the late Rolf Bergfors, GIL as well the Independent Living Institute and was the director of ILI from 1993 to October 2017.
Bengt Elmén, Stockholm, author, debater and lecturer, board member of STIL, Office Manager STIL 1987 - 1991.
Gilla Andersson, substitute for Bengt Elmén, board member of STIL since 2006 and its vice president since 2016, president of the Rheumatism Association Lidingö since 2016.
Jamie Bolling, Härnösand, human rights defender focusing on disability issues, Former Director of ENIL 2009 - 2017, former member of the Swedish Green Party’s national board, board member of STIL and MyRight.
Judith E. Heumann, Washington DC, USA. Judy Heumann is one of the premier internationally recognised Independent Living activists known among other things: for her role in the movement's 28 days occupation of the Federal Building in San Francisco that forced the Federal Government to sign Section 504 of the Rehabilitation Act of 1973; for her work at the Center för Independent Living Berkeley (where she laid the foundation of todays Disability Rights Education and Defense Fund); as promoter and Director, together with Ed Roberts, for the World Institute on Disability; as Assistant Secretary for the Office of Special Education and Rehabilitation Services, US Department of Education 1993–2001;World Bank Group first Advisor on Disability and Development 2002-2006; Director, Department of Disability Services, District of Columbia; Special Advisor on Disability Rights for the US State Department 2010–2017.
Kalle Könkkölä, Helsinki, Finland, was director of Threshold, Tröskeln, the first European Independent Living Center which he founded in 1973, co-founder of the Finnish Green Party, former Finnish MP, former chairman of Disabled People’s International, founder and president of Abilis Foundation among others. Kalle Könkkölä passed away in September. Read Kalle Könkkölä has left us, by Adolf Ratzka.
In 2018, the board held two board meetings, one physical meeting on May 31 and one per capsulam decision via e-mail and telephone on July 6. In addition, regular contact has been made via mail and telephone.
Stockholm, 2019 -