Independent Living Institute (ILI) Annual Report 2005

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Independent Living Institute (ILI),
Annual Report 2005

2005 was another busy year with work of about the same volume and direction.

Continuing Projects

Fashion Freaks,, is to give wheelchair users access to:

- basic clothing patterns with instructions for size alteration for better individual fit,
- information about useful materials and special products as well as information about where to find  them,
- a tips bank where wheelchair users list their solutions, and a network where questions can be
  asked and ideas shared with other wheelchair users.

The project is supported by the Swedish Inheritance Fund. Project coordinator is Susanne Berg. Meagan Whellan and Sari Nykvist also worked with the project.
Radio Independent Living,, is a pilot project for producing a number of 30 minute audio programs about civil rights, cultural identity and solidarity. Themes covered so far include de-institutionalization, self-determination, law and legal action as instruments for social change, cultural identity and solidarity. The downloadable sound files report on trends, projects and policies both within and outside Sweden. The project utilizes the Internet’s cost effectiveness in disseminating the programs which users of ordinary home computers can listen to. The project is financed by the Swedish Inheritance Fund. Project coordinator is Susanne Berg. A number of freelance journalists work with the project.

The Disability Ombudsman Reporting Service,, (in Swedish only) aims at facilitating reporting of instances of discrimination to the Office of the Disability Ombudsman and Local Building Authorities for further actions which, however, are limited by current legislation. Also, reports are archived in a national database easily accessed by search engines. As an example, someone searching for “Forex Uppsala” for some other purpose will be informed that the Uppsala office, due to its inaccessible premises, discriminates against customers with disabilities. Hans Filipsson, coordinator of the annual March for Accessibility (Marschen för tillgänglighet) works for promoting the service as one of the tools for a more accessible society.  In August 2005, The March for Accessibility organized a mass filing of complaints of discriminating inaccessibility using the service, which resulted in an enormous increase in the number of complaints.

The Personal Assistant Referral service,, aims at facilitating travel abroad for personal assistance users.

The Vacation Home Exchange service, www.independentlivinorg/vacaswap.html, supports travel abroad by people with extensive disabilities, by listing accessible homes that can be swapped for vacation purposes.

The Independent Living Virtual Library, is another ongoing project. It enables authors of disability and Independent Living related texts in the form of scientific journal articles, reports, monographs, guides, personal insights or lectures, to safely archive their work in our library for easy and searchable access to currently a wide audience with over 1,000 unique visitor a day. At the moment, there are approximately 150 Swedish texts and over 700 titles in other languages, primarily English, in our collection.


Projects Finished During the Year

Study and Work Abroad for All,, built an online database on our homepage for:

- youth with or without disabilities interested in study and internships abroad,
- universities wishing to be open to all groups including persons with disabilities
- interest groups who acknowledge the benefits of diversity and want to make available internships for, amongst others, youth with disabilities.

The service offers information about currently over 1,100 post-secondary educational institutions that cater to disabled students. In addition, the service lists names and addresses of currently over 250 NGOs in many countries that can inform about local conditions at the planned study location in terms of accessible housing, transportation or personal assistance and sign language interpretation. The information is in English at The 3 year project was funded by the Swedish Inheritance Fund (administered by the Ministry of Social Affairs) and was finished at the end of December 2005. The final report (in Swedish) is available at Although the financial support from the Swedish Inheritance Fund has terminated, we continue to update and maintain the growing database, presently without outside support.

A continuation of the project, though with a different focus, has started in January 2006, funded by the European Union, with Nicoletta Zoannos as project coordinator. For a description of the project  Training as Vehicle to Employment see

The  pre-study Assistansportalen aimed at preparing for and facilitating the construction of an online service that is to strengthen the individual personal assistance user’s position in the market for assistance services which has sprung up as a result of the 1994 Swedish national personal assistance reform (LASS). The project is intended to increase the quality of existing services  through comparative consumer information as well as advice and support for the individual assistance user. The pre-study was carried out together with under support from the Swedish Board of Consumer Affairs (Konsumentverket) and was finished in December. See the pre-study’s final report (in Swedish) at 

Assistanskoll will be the pre-study’s continuation starting in January 2006 with Anna Lundström as coordinator. See


Invitations to join project applications

Our partnership was requested for participation in European Union grant applications or for other cooperation by

Riga Social Integration Society, R.S.I.S. for a project about attitudinal change in the area of disability, labor market issues and social integration of persons with disabilities in Latvia.

e-ISOTOS, an NGO in Athens, Greece for a project involving e-inclusion, e-Accessibility

CESOS, Centro di Studi Economici Sociali e Sindicali, Rome, Italy for a project about sight-impaired persons’ participation in the general information market

Genoa City Council for a project that is to promote local government policies in the area of disability, to build a network and to organize events

University of Jyväskylä, School of Business and Economics, Jyväskylä, Finland for research project LIIKE 2 which is to investigate disabled peoples’ opportunities for entrepreneurship in knowledge-intensive industries

CONFENADIP, Lima, Peru for the study “Disability, Development and Democracy in Peru”

Texas Institute for Rehabilitation and Research, Independent Living Research Utilization Program, Baylor College of Medicine Department of Physical Medicine and Rehabilitation, Houston, Texas for documentation and dissemination of examples of good practice in the area of disability policy

ROBOTIKER INNOVA, TECNALIA, Zamudio, Spain for project  InclOcio, as part of the European Union’s eTEN Workprogramme, that is to involve construction of an international webportal with information about leisure activities
APRES Handicap, a French NGO based in Paris, for their project “Paris Pilot City for Disability” which is to suggest new legislation


Participation in events

March 14-17  regional conference “Disability Policy and EU Accession Process in South East Europe” in Sarajevo, Bosnia and Herzegovina, hosted by Center for Independent Living Serbia and Lotus, Bosnia and Herzegovina, Catholic Relief Services, Handicap International. Among the participants were representatives for the European Union Commission, EU Parliament, ILO, Council of Europe, South East European governments. ILI’s director gave a presentation and participated in a seminar and press conference.

May 22-24  Adolf Ratzka took part in a seminar at Vadstena, Sweden about the differences between the US and Sweden regarding the interpretation of citizenship and legislation in the area of, among other things, disability
May 26 – June 1  “Swedish Week” in Bulgaria, hosted by Center for Independent Living Socia, Bulgaria. ILI’s director contributed with lectures, participated in seminars, press conferences and meetings with, among other people, political party leaders.

ILI lectured twice this year for students in the course “Individual Design of the Environment” at Karolinska Institute, Neurotec Department, Occupational Therapy.

Sep 22  Adolf Ratzka gave a talk at SVERI (Swedish Committee for Rehabilitation International) seminar about assistive technology presenting his suggestion for a pilot project with Direct Payments for assistive technology. See also

Sep 29  Adolf Ratzka introduced and moderated STIL’s seminar about the Swedish Personal Assistance Act with Jan Andersson and Kenneth Johansson, chair and member, respectively, of the National Taskforce on Personal Assistance (Assistanskommitén), in connection with the bi-annual Hjultorget Exhibition.

Dec 22  Adolf Ratzka served as jury member in the Handicap International Award for examples of good community based projects in South East Europe. See


Participation in reference groups, etc.

Adolf Ratzka was appointed member of the International Advisory Council Kyoto World Cities 2020 Challenge. See


Invitations we could not follow

May 5 European Multiple Sclerosis Congress, Lisbon, Portugal for a presentation of ILI’s online services and deliberations regarding possible cooperation for a web-based EMSP project on youth issues.

March 3  Lecture at AGM at Helsingborg Cooperative for Independent Living  in Helsingborg, Sweden



ILI issued one newsletter entitled “Disabled youth too can be trainees or volunteers”

Within ILI’s project Radio Independent Living a number of sound files were published on ILI’s Swedish homepage at Some of the programs are transcribed to English.

Ratzka, Adolf. 2005-07. "Independent Living Empowers People with Disabilities", Development Outreach. World Bank. July 2005 and as well as

Ratzka, Adolf, 2005-04. “Proposal: Direct Payments for Assistive Technology”, Disability World,, republished plenary presentation at the 7th European Conference for the Advancement of Assistive Technology, "Shaping the Future," Dublin, Ireland, August 31st - 3rd September 2003.



April 18  Swedish Radio Broadcast P1 portrait of Adolf Ratzka, “A disability ideologist”

May   interview in ”Success & Ability”, periodical of Ability Foundation, Chennai, India for their special edition about Independent Living


Study visits at ILI

April 27  15 civil servants, service providers, politicians at the bundesland level and representatives of the German Independent Living Movement (Selbstbestimmt Leben), organizer Deutscher Paritätischer Wohlfahrtsverband, Berlin, Germany

July 19  Päivi Nurmi-Koikkalainen, researcher at STAKES, National Research and Development Centre for Welfare and Health, Helsinki, Finland

Sept 27  Marco Aurelio Colindres Estrada, member Comisión Política de Accesibilidad a Espacios Públicos y Transporte, Guatemala.

October 6 Philippe MIET, Conseiller national Familles/ Relations Internationales APF - Association des paralysés de France, Paris, France.


ILI website

During the year our website continued to be the first result (among 7.8 million websites) for the Google search term ”Independent Living”. The site attracts some 1,700 unique visitors daily. We often get to hear that our virtual full-text library has an important international function.

Other contacts

Inquiries and requests from around the world for information regarding disability issues, research, publications, referral to resource persons and other contacts as well as for comments on planned projects continue to be an interesting and important part of our activities for which we currently have no budget for.

ILI staff

Susanne Berg left as project coordinator for Radio Independent Living in September but continues in her capacity as project coordinator of Fashion Freaks. Philip Day was part-time project coordinator for Study and Work Abroad for All after Sebastian Ferrer who took over parts of ILI’s economic administration on a volunteer basis. Miles Goldstick continued to maintain the technical aspects of our website on a part-time basis. Finn Hellman worked for project Radio Independent Living. Finn is a radio journalist by training. Hans Filipsson was responsible for maintaining and upgrading the Disability Ombudsman Reporting Service. Adolf Ratzka continued as director on a part-time basis. Anne Rentzsch and Sybille Neveling worked part-time for project Radio Independent Living. Nicoletta Zoannosstarted to work part-time for ILI during the fall. She has a background in Human Resources Management and worked with ILI’s administration as well as with the grant application and preparations for project ”Training as Vehicle to Employment” to be started in January 2006 (see



We gratefully acknowledge support from STIL, Stiftarna för Independent Living i Sverige a.k.a. Stockholm Cooperative for Independent Living, which offered us free office space and financial support for maintaining and improving our website, for financing smaller projects whose costs could not be covered any other way as well as for co-financing EU projects.

Our thanks go also to Cable & Wireless, for their sponsor agreement which covers web hosting and associated services.

Our most important financier is the Swedish Inheritance Fund (Allmänna Arvsfonden) that paid for projects Study and Work Abroad for All, Radio Independent Living and Fashion Freaks.


ILI Board

At the Annual General Meeting on October 25, conducted by email, Ms. Kapka Panayotova was appointed to succeed Philip Mason, Hampshire who left the Board after more than 10 years of service. Philip was a firm supporter throughout these years. Kapka is founder and director of the Center for Independent Living Sofia, Bulgaria which has already changed the country’s disability politics during its short existence. Kapka has built up a large international network of contacts and her work has become widely known outside Bulgaria.


The Board of the Independent Living Institute

Bente Skansgård
Kapka Panayotova
Anki Celander (1)
Adolf Ratzka

(1)  substitute board member for Rolf Bergfors who died in April 2006

ili Project: