- Judy Heumann har lämnat oss (sidan på svenska)
Presenters at the Tenerife Conference on Independent Living 2004 with Judy Heumann in the first row
Judy Heumann has left us.
The worldwide Independent Living and Disability Rights Movement has lost its most outspoken, powerful, and tireless spokesperson. Judy Heumann passed away on March 4, aged 75.
- Judy Heumann has left us (page in english)
Föreläsare vid första europeiska Konferensen om Independent Living, Teneriffa 2004 med Judy Heumann i första raden
Judy Heumann har lämnat oss.
Den världsomspännande rörelsen för Independent Living och funktionsrätt har förlorat sin mest elokventa, kraftfulla och outtröttliga talesperson. Judy Heumann avled den 4 mars, 75 år gammal.
- Friheten att bestämma med vem, var och hur en vill bo – Avinstitutionalisering/Deinstitutionalization (DI) i Sverige (sidan på svenska)
In this publication, Jamie Bolling and Riitta-Leena Karlsson examine what is required to provide persons with disabilities with opportunities to live like others. The UN Convention on the Rights of Persons with Disabilities (CRPD) and existing Swedish laws, not least the Social Services Act (SoL) and the Act concerning Support and Service for Persons with Certain Functional Impairments (LSS), support this goal. However, as the authors note, the implementation recently has become restrained in a manner that has impaired the possibilities to do so for many.
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- Freedom to choose with whom, where and how you want to live – Deinstitutionalisation (DI) in Sweden (page in english)
I den här skriften redovisar Jamie Bolling och Riitta Leena Karlsson vad som krävs för att personer med funktionsnedsättning ska få möjligheter att leva ett liv som andra. FN:s konvention om rättigheter för personer med funktionsnedsättning och gällande svenska lagar, inte minst socialtjänstlagen och lagen om stöd och service till vissa funktionshindrade (LSS), ger stöd för det målet, men som de konstaterar så har tillämpningen under senare stramats åt på ett sätt som för många har försämrat förutsättningarna att kunna göra det.
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Stefan Käll har gått bort
Independent Living Institute är ledsen att informera om att Stefan Käll, en god vän och viktig person inom Independent Living Rörelsen, tyvärr hastigt har gått bort i cancer.
Commemorating Philip Mason, MBE
Philip Mason has left us at the age of 81.
Philip had an important role in the British and European Independent Living Movement. He served on the ILI Board from ILI’s beginnings until he resigned in 2005 to be able to concentrate more on local issues.
DRD Newsletter June 2022
In this edition of the DRD newsletter you are invited to save the date for the CRPD COSP and the ENIL/DRD side event. You can also read several articles on the theme of or around deinstitutionalisation in the EU context with the ENIL comparison between care and personal assistance, the Swedish context with ILIs DI paper and an account of a loss of social services and the lack of choice in living arrangements and lastly on personal assistance in the Norwegian context:
- Save the date for the COSP on June 14 – 16 at 21:15 CET for the ENIL/DRD side event “Resisting calls to invest in institutions – a discussion with funders, policy makers and DPOs.
- What is a COSP? gives a little background on the COSP of the CRPD.
- EU Mass Directive and what it means for disabled Ukrainians.
- Save the date for the Swedish workshop on the DI guidelines.
- Guidelines for consultation on deinstitutionalisation.
- ENIL Care VS Personal Assistance.
- The Independent Living Institute’s publication called “ The Freedom to decide with whom, where and how to live - Deinstitutionalization in Sweden ” on the history of Sweden closing the larger institutions from January 2000 but where with cuts there is the threat of reinstitutionalisation.
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Annika's daughter forced to move to group housing - "An abuse".
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Battle for future personal assistance in Norway is an English version of the Norwegian article published on the webpage of AssistansKoll
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Won Finnish case against discrimination of disabled people and the libert
This document was co-created in May 2022 by Teodor Mladenov (University of Dundee), Jim Elder-Woodward (Scottish Independent Living Coalition), Mari Siilsalu (Independent Living Institute), Ines Bulic Cojocariu (European Network on Independent Living), Nadia Hadad (European Network on Independent Living), and Lilia Angelova-Mladenova (European Network on Independent Living).
Decision adopted by the UN CRPD Committee against Finland under article 5 of the Optional Protocol, concerning CRPD art 5, 14 and 19
The UN CRPD Committee found that the fact that the relevant domestic authorities in Finland rejected the author’s application for personal assistance on the basis of resource criteria is indirect discrimination against persons with intellectual disabilities as it had the effect of impairing or nullifying the author’s enjoyment and exercise of the right of living independently and being included in the community on an equal basis with others, in violation of his rights under article 5 (1) and (2) read alone and in conjunction with article 19 of the Convention on the Rights of Persons with Di
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Utställning med fotografier och berättelser från ett Photovoice projekt av Disabled Refugees Welcome (DRW)
VI VILL BLI LYSSNADE TILL!
Erfarenheter av migranter med funktionshinder i Sverige.
Utställning med fotografier och berättelser från ett Photovoice projekt av Disabled Refugees Welcome (DRW).
På Mångkulturellt centrum, Värdshusvägen 7, Fittja
Utställningen pågår från 11 mars till 14 april 2022
- Independent Living Institute Verksamhetsberättelse 2021 (sidan på svenska)
Independent Living Institute (ILI) works to promote opportunities for individuals with disabilities for more personal and political power, self-determination, full participation and equality through information, education, lobby and project activities. During 2021, ILI carried out several projects to reach its goals and visions which are described in this document. All the projects have their own webpage, Facebook-page and publish newsletters.
The structure of this annual report is as follows:
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Fokus funktionshinder – digital minikonferens
Datum
Onsdag 16 mars 2022
Kl. 13:30–15:00
Möt aktörer i Stockholms län som på olika sätt arbetar med att stödja utveckling av stöd, vård och omsorg till personer med funktionsnedsättning.
- Independent Living Institute Annual Report 2021 (page in english)
Independent Living Institute (ILI) arbetar för att främja möjligheterna för människor med funktionsnedsättning till mer personlig och politisk makt, självbestämmande, full delaktighet och jämlikhet genom information, utbildning, opinionsbildning och projektverksamhet. Under 2021 verkade ILI via flera projekt för att uppnå sina mål och visioner som beskrivs i detta dokument. Alla större projekt har egna webbsidor, facebooksidor och ger ut nyhetsbrev.
Årsberättelsens struktur är som följer: 1) projektverksamhet, 2) övrigt om verksamheten och institutet inkl. förteckningar över evenemang, nyhetsartiklar, remissvar m.m. som genomförts/ producerats under året samt personal, styrelse och finansiering.
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Vad är Independent Living (IL) och vad står det för?
I den här essän berättar Jamie Bolling, Independent Living Institutes verksamhetsledare och Artikel 19 som verktygs projektledare, historien bakom IL-rörelsen, förklarar begreppen och reder ut vad Independent Living innebär.
- Låt livshjälp gå före dödshjälp (sidan på svenska)
- Help to live before help to die! (page in english)
- Lasst nicht andere darüber entscheiden, ob euer Leben lebenswert ist! (page Deutsch)
Sólo en Suecia, más de 16.000 personas perdieron la vida en la pandemia. Sin embargo, el suicidio asistido para personas con extensas discapacidades y enfermedades terminales es el debate actual. Llevo más de 60 años viviendo con un respirador. Amo mi vida. ¡No dejes que otras personas determinen si tu vida merece la pena ser vivida!
- Låt livshjälp gå före dödshjälp (sidan på svenska)
- Help to live before help to die! (page in english)
- Ayuda para vivir antes que para morir (page Español)
In Schweden haben bisher über 16000 Menschen ihr Leben durch die Pandemie verloren. Dennoch wird hier zur Zeit die Beihilfe zum Suizid für Menschen mit umfassenden Behinderungen und unheilbaren Krankheiten debattiert.
Ich lebe seit über 60 Jahren mit einem Beatmungsgerät. Ich liebe mein Leben.
Lasst nicht andere darüber entscheiden, ob euer Leben lebenswert ist!
- Låt livshjälp gå före dödshjälp (sidan på svenska)
- Lasst nicht andere darüber entscheiden, ob euer Leben lebenswert ist! (page Deutsch)
- Ayuda para vivir antes que para morir (page Español)
In Sweden alone, over 16,000 people lost their lives in the pandemic. Yet assisted suicide for people with extensive disabilities and terminal diseases is the current debate. I've been living with a respirator for over 60 years. I love my life. Let not other people determine whether your life is worth living!
Help to live before help to die!
Björn Natthiko Lindeblad, the former business leader, Buddhist monk, author and lecturer who was diagnosed with ALS, was in the media spotlight when he chose to end his life on January 17. The debate has been about the right of persons with terminal illnesses and severe limitations to end their lives. But what right do we have to help and life-sustaining treatment to live with terminal illnesses and severe limitations?
- Help to live before help to die! (page in english)
- Lasst nicht andere darüber entscheiden, ob euer Leben lebenswert ist! (page Deutsch)
- Ayuda para vivir antes que para morir (page Español)
Denna skrivelse publicerades först i en debattartikel i Sydsvenskan.
Björn Natthiko Lindeblad, den tidigare företagsledaren, buddistmunken och föreläsaren som diagnostiserades med ALS, har fått stor uppmärksamhet efter att han valde att avsluta sitt liv.
Debatten handlar om att människor med obotliga sjukdomar och stora begränsningar ska ha rätten till att avsluta sina liv. Men en annan viktig fråga är vilken rätt man har till hjälp och livsuppehållande behandling för att kunna leva med obotliga sjukdomar och stora begränsningar.
ENIL Job Opportunity: Policy Coordinator
The European Network on Independent Living (ENIL) is looking for a full time Policy Coordinator for its Brussels office, with a starting date as soon as possible. The Policy Coordinator will be responsible for planning and implementing ENIL’s advocacy strategy at the European and international level. Apply by 6 February 2022
Meeting of the Disability Rights Defenders Nordic network on February 2, 2022
Come to the Meeting of the Disability Rights Defenders Nordic network on February 2, 2022 – Time: 13:00 – 16:00 CET
This meeting is a follow up from the Nordic network meeting in November 2020. Representation is confirmed from Estonia, Finland, Norway and Sweden.
On the agenda:
- our work with the CRPD,
- our work with personal assistance, obstacles and cooperation going forward.
Please confirm attendance to me by January 22, 2022 – Jamie.bolling@independentliving.org . Welcome!
Disability Rights Defenders Newsletter December 2021
This Disability Defenders Network Newsletter is dedicated to Kapka Panayotova
Jamie Bolling
Missa inte seminarium om - Demokrati + trygghetssystem = sant? Måndag 6 december 2021
När: Måndag 6 december 2021 12:30 - 13:30 G4
Plats: MR-dagarna i Göteborg. Den 6-7 december 2021 arrangeras Mänskliga Rättighetsdagarna för tredje gången i Göteborg
Arrangör: Independent Living Institute och projektet – Artikel 19 som verktyg
Vem:
Mabel Giraldo
University of Bergamo, Italy
October-November 2021
My name is Mabel Giraldo. I'm a PhD and research fellow at University of Bergamo in Italy, Department of Human and Social Sciences.
From October 11th to November 14th 2021, I was hosted by the Stockholm University at the Department of Special Education as visiting researcher, related to “Outgoing Visiting Fellowship” (grant) under the “STaRs Program (Supporting Talented Researchers) - action 2, 2020” of University of Bergamo.
ILI congratulates ULOBA on their 30th anniversary.
ULOBA's 30th anniversary
ULOBA with Bente Skansgård in the front has accomplished so many things and serves over a thousand persons in Norway with personal assistance. But ULOBA has done more, without ULOBA ENIL would have had to close when the EU commission withdrew funding. But no, we together continue a strong fight for Independent Living throughout Europe. Thank you ULOBA for all that you have done and do today! Happy 30th! from ILI.
Den sorgliga nyheten om förlusten av en våra mest betydelsefulla medkämpar Kapka Panayotova
- The sad news of the loss of one of our important fellow activists Kapka Panayotova (page in english)
Independent Living Institute är ledsen att meddela den sorgliga nyheten om förlusten av en av våra mest betydelsefulla medkämpar i vår rörelse – Kapka Panayotova från Sofia, Bulgarien. Hon är som min syster, tillsammans har vi delat gemensamma projekt och kampen för Independent Living sedan 1998. Vi har delat engagemanget, frustrationer och roliga stunder som drivit oss att fortsätta kämpa för jämlikhet tillsammans. Det är en sorglig och grym verklighet hur liv och död, glädje och sorg, går hand i hand, säger Jamie Bolling.
The sad news of the loss of one of our important fellow activists Kapka Panayotova
- Den sorgliga nyheten om förlusten av en våra mest betydelsefulla medkämpar Kapka Panayotova (sidan på svenska)
The Independent Living Institute is sorry to share the sad news of the loss of one of our important fellow activists in our movement – that of Kapka Panayotova from Sofia, Bulgaria. She is like my sister, having shared projects and the fight for Independent Living since 1998. We shared our commitment, our frustrations and fun moments allowing us to continue the battle for equality together. It is sad and a cruel reality how life and death go hand in hand, happiness and sorrow, says Jamie Bolling. I will miss Kapka and her power, giving us all strength and support in the work that we do.
(Daniela Komanická)
Stockholm 21st September 2021
Joint ILI and UNHCR initiative to empower refugees with disability in Sweden
1 oktober 2021
Till: Socialdepartementet
Diarienummer: S2021/04587
Vår kontaktperson: Jamie Bolling, jamie.bolling@independentliving.org
Remissinstans: Independent Living Institute
Independent Living Institute (ILI) är en ideell tankesmedja och projektplattform inom medborgarrättsrörelsen Independent Living av personer med funktionsnedsättning. Våra grundläggande principer är självbestämmande, självrespekt och empowerment (bemäktigande och bemyndigande). Vi lämnar här vårt remissvar på betänkandet SOU 2021:37 Stärkt rätt till personlig assistans.
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Disability Rights Defenders (DRD) / ‘IL Nordic Network’ is a project of Independent Living Institute (ILI)[1]. This report summarizes the activities, results and outcome of DRD from September 2020 to June 2021.
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Material for a study circle concerning human rights in accordance with Article 19 of the Convention on the Rights of Persons with Disabilities By Emil Erdtman, 10/09/2019 Revised by Artikel 19 som verktyg, autumn 2020
The United Nations Convention on the Rights of Persons with Disabilities became legally binding for Sweden in 2009. Article 19 of the Convention concerns the right to a life with self-determination within the community.
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- Independent Living Institute Verksamhetsberättelse 2020 (sidan på svenska)
Independent Living Institute (ILI) works to promote opportunities for individuals with disabilities for more personal and political power, self-determination, full participation and equality through information, education, lobby and project activities. During 2020, ILI carried out several projects to reach its goals and visions which are described in this document. All the projects have their own webpage, Facebook-page and publish newsletters.
The structure of this annual report is as follows:
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- Independent Living Institute Annual Report 2020 (page in english)
Independent Living Institute (ILI) arbetar för att främja möjligheterna för människor med funktions-nedsättning till mer personlig och politisk makt, självbestämmande, full delaktighet och jämlikhet genom information, utbildning, opinionsbildning och projektverksamhet. Under 2020 verkade ILI via flera projekt för att uppnå sina mål och visioner som beskrivs i detta dokument. Alla större projekt har egna webbsidor, facebooksidor och ger ut nyhetsbrev.
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2023
- Remissyttrande till lagrådsremiss Vissa skärpta villkor för anhöriginvandring och begränsade möjligheter till uppehållstillstånd av humanitära skäl - Ju2023/00511
- Remissvar - SOU 2023:9 Ett statligt huvudmannaskap för personlig assistans (Diarienummer S2023/00990)
- Remissyttrande - promemorian Ett höjt försörjningskrav för arbetskraftsinvandrare - Ju2023/00106
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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
Interviews with Personal Assistance Users and Independent Living Activists
Master’s Thesis
Abstract
Article 19 of the UN Convention on the Rights of Persons with Disability (CRPD) states the right for disabled people to live independently and to be included in the community. The article includes the right to personal assistance as a tool for independent living. General Comment Number 5 on Article 19 of the CRPD criticizes the inadequacy of the implementation of this right and gives clear criteria, which define the term personal as-sistance. These criteria have to be fulfilled in order to call a service personal assistance.
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Webinar 'Legal remedies through litigation for the rights of disabled people' November 2020
The ILI projects Disability Rights Defenders and Article 19 as a tool together with the ENIL - the European Network on Independent Living held a webinar on "Legal remedies through strategic litigation for the rights of disabled people"on the 17th of November 2020. The recording of the webinar can be watched on youtube.
DRD Kick-off meeting: the Nordic focus!
Disability Rights Defenders is in its third year now and in this current project period we put our focus on the Nordic countries. Therefore DRD held a kick-off meeting on the 5th of November, 14.00 - 17.00, to discuss the future development of the network and potential co-operations in the Nordic. The recording of the meeting can be found here.
Key speakers were Adolf Ratzka and Vibeke Melstrom who shared their point of view and vision as a basis for a discussion on what is needed and how the network should develop in general. Together with the 40 participants we discussed the Nordic focus, how and with whom to co-operate etc. To get some ideas we heard some voices from different Nordic countries about the situation and what is needed in their countries. The meeting was moderated by Jamie Bolling, director of ILI. The following report summarizes shortly the highlights of the DRD Kick-off meeting.
Disability Rights Defenders Newsletter November 2020
In this newsletter, we share court cases and resources with you and others with an interest in disability rights. We inform about webinars, news and job opportunities. This time we want to highlight our upcoming DRD Webinar on “Legal remedies through strategic litigation for the rights of disabled people” that we host together with the project “Article 19 As a Tool” and ENIL, the European Network on Independent Living on the 17th of November, 14.00 - 16.00 CET. We invite lawyers, law students, disability and human rights advocates, disabled people's organisations and all persons with an interest in strategic litigation to join the meeting. We look forward to a fruitful discussion!
- Court Cases
- Resources
- Webinars
- Surveys
- News
- Job opportunity
- Request for information
Prof. Gerard Quinn’s Appointment as the UN Special Rapporteur on the Rights of Persons with Disabilities
- Professor Gerard Quinn har utnämnts till FN:s särskilda rapportör för rättigheter för personer med funktionsnedsättning (sidan på svenska)
2020-10-07
We at the Independent Living Institute (ILI) are very pleased to share the news about Prof. Gerard Quinn’s Appointment as the UN Special Rapporteur on the Rights of Persons with Disabilities. The press release from the European Network on Independent Living - ENIL is well worth reading.
Professor Gerard Quinn har utnämnts till FN:s särskilda rapportör för rättigheter för personer med funktionsnedsättning
- Prof. Gerard Quinn’s Appointment as the UN Special Rapporteur on the Rights of Persons with Disabilities (page in english)
NYHET: Gerard Quinn utses till FN:s särskilda rapportör för rättigheter för personer med funktionsnedsättning
Vi på Independent Living Institute (ILI) är mycket glada över att få dela med oss av nyheten om att professor Gerard Quinn idag har utnämnts till FN:s särskilda rapportör för rättigheter för personer med funktionsnedsättning.
Finland (population 5.5 million) has personal assistance. In 2020 there were 28 000 personal assistance clients.
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Disability Rights Defenders Newsletter July 2020
In this newsletter we collected important news and resources for you and others with an interest in disability rights. We share court cases and information about funding and training opportunities. Of course, there are also facts and news about disability inclusive responses in the current pandemic.
- Court Cases
- Participate and get active
- Funding and training opportunities
- Resources
- COVID-19
- Rewatch Webinars
- Employment and disability
- News from around the world