In This Issue
Remembering Erik Ljungberg...
Save the date!...
ENIL Newsletter on the Joint Committee on Human Rights Report on Independent Living and UNCRPD...
Recommended reading...
Edward Scissorhands... the cuts in Italy...
Irish MEP's Discuss European Union Austerity Measures...
Protest in Germany...
After-birth abortion or the danger of thought experiments...
The chair as art-form!...
Mind Change Conference...
Struggle for personal assistance in Finland...
AER Committee two meeting - March 2012 in Joensuu, Finland....
European Disability Forum (EDF) answers the Accessibility Act Consultation...
ENIL's visit to Belarus: "What is IL and why is it needed?"...
Role model...Aaron Abbey, from Ireland...
Press release: 'A path to finding luck - the story of a disabled young man'...Danijel Spasojevi
Innoserv project: We are still collecting but will soon be sharing...
Remembering Prof. Jim Mansell...
Germano Tosi - new ENIL board member since February 2012...
International Project: Supporting young disabled people to become future leaders of the Independent ...
ENIL Membership...
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Independent Living News! Editorial team
Jamie Bolling
Ines Bulic
Juan Benages
Peter Lambreghts

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    29th March, 2012


Enil logoIndependent

Living News!

European Network
on Independent Living

Nothing about us without us!


Editorial Team Update


In this March newsletter we offer a variety of interesting reading material for Independent Living activists. You can find important documents like the report of the U.K. Joint Committee on Human Rights on the implementation of the right of disabled people on Independent Living, or the issue paper the right of people with disabilities to live independently and be included in the community by the Commissioner for Human Rights from the Council of Europe. We also have additional translations of the ENIL proposal for EP resolution against 'the cuts' (see previous newsletters & ENIL website) in Dutch and in French.


But we also have: Aaron from Ireland, Danijel from Slovenia, wheelchair-art in Brussels (good practice!), after birth abortion concept??? (bad practice!), news from Italy, Belarus and Finland and much more ...



I am sorry to announce that our friend and colleague Erik Ljungberg died suddenly on the 16th of March. Erik was born in 1973 in Sweden. At 38 years of age Erik was all too young to part with this world.  ENIL will miss him greatly: as a board member he contributed actively to ENILs work for the rights of disabled people.


Erik lived in Gothenburg, Sweden, where he was a great activist for the Independent Living movement. His work and efforts to make the transport system accessible were known by many and he was successful awareness-raising through among other things his website Vasttragik. The website exposed the discrimination that transport company rules were inflicting on disabled people.



27 April 2012: demonstration "Parachutes/bailouts for all!" from the Federal Chancellery to the Brandenburg Gate in Berlin, Germany. More info.


2nd - 4th May 2012: first European Mind Change Conference "Social inclusion of people with disabilities" in Villach, Austria.  

Jamie Bolling, Executive Director of ENIL will give a keynote address on "New Policy to Promote Independent Living: Change Needed to Progress De-Institutionalisation, Community Living and Personal Assistance.".  

More info.


8th May 2012: UN colloquium: CRPD and EU Structural Funds: The way ahead for independent living, Brussels, Belgium. 

Dr. Adolf Ratzka (Independent Living Institute - ILI) & Ines Bulic (ECCL & ENIL) will be there as keynote speakers.  


23rd - 25th May 2012: ESCIF Congress: The impact of the ongoing economic crisis on the lives of people with SCI in Europe, in Lucignano, Italy. Dr. Adolf Ratzka (Independent Living Institute - ILI) will be there as keynote speaker. More info


31 May - 2 June 2012: Europe in Action 2012 / Inclusion Europe: New Work Opportunities for People with Intellectual Disabilities, Brussels, Belgium. More info.


18th - 23rd June 2012: Centre for Disability Law & Policy, NUI: The 4th International Summer School "The UN Convention on the Rights of Persons with Disabilities - How to Use it" Galway, Republic of IrelandMore info.



Rights of disabled people may be at risk, says Human Rights Committee.


The disability movement / Independent Living movement of the UK is very pleased about the outcome of this report. It was exactly what we needed after almost two years of challenging the government on how the cuts and austerity measures were affecting disabled people's ability to live independently.

The report is highly critical of the government's measures in cutting back services, and the ILF (Independent Living Fund) which is putting disabled people at severe risk for the future.

This is by far the most comprehensive critique of an EU Member State policies which are affecting disabled people severely. No other governmental level report has come out in Europe highlighting the impact the austerity measures are having on Independent Living. This report can be very useful for the Independent Living movement throughout Europe in challenging their current austerity policies.

The question is whether the UK government will take this seriously or just ignore it.



" The right of people with disabilities to live independently and be included in the community".


Issue Paper commissioned and published by the Commissioner for Human Rights of the Council of Europe.


Download it here


He couldn't have done worse than this. The BTP-Bund spread going up and down, the European Central Bank, a crisis in welfare: explain it how you want but at the end of the day there is a scapegoat that has always been used and that's the weak. 

In the middle of this, disabled people are to be kept even further away from the rest of society but nevertheless under firm control. We are seen as a problem that has to be increasingly managed as the population ages. This year the situation is even worse, with cuts pushed through based on the invented notion of "fake invalids"...



On the 9th February 2012 ENIL and the parliamentary group GUE/NGL held a hearing in the European Parliament entitled 'Defend the right of Independent Living - How the EU's austerity policy is undermining the lives of people with disabilities'.

Before the hearing I met up with two Irish Members of the European Parliament, Mairead McGuinness and Paul Murphy. We discussed the impact of the austerity measures on the lives people with disabilities and the future implications of these measures.


Every year around the 5th May, the European day of protest for equal rights for people with disabilities, there are many actions and initiatives of disability organizations in many parts of Germany.


On 10 May 2011 more than 1,000 people with and without disabilities met for a demonstration with the motto "bailout/parachutes for all!" going from the Brandenburg Gate to the Federal Chancellery. Many disability organizations supported the action.



"Parents should have the right to kill their newborn baby." So say two academics in an article in the renowned 'Journal of Medical Ethics'. Their controversial statement provoked a global wave of horror and even death threats.

Alberto Giubilini, Professor at the University of Milan, and Francesca Minerva, from the Centre For Applied Philosophy and Public Ethics at Melbourne University, wrote a provocative essay in which they state that it is morally justifiable for parents to kill their newborn child. The academics argue that "postnatal abortion" should be permissible not only on medical grounds, but also because of social or financial reasons. Even if the parents just did not want their child, it should be possible to let it die, so say Giubilini and Minerva.


An original exhibition is currently on show in the metro station Botanique in Brussels: Chais'Art. The theme of the exhibition is the wheelchair as artistic icon, giving a new and amusing take on the subject. 

The artist is Cleon Angelo, himself a wheelchair user, working in collaboration with Benedict Gastout, graphic designer. The aim of the exhibition is to put the spotlight on the issue of accessibility for wheelchair users. Chais'Arthas experimented with different variations of the international symbol for accessibility for wheelchair users. The images are humorous, but they are also surprising and thought provoking.  



The first European Mind Change Conference will take place in Villach, Austria from the 2nd - 4th May 2012.


Mind Change is an NGO that promotes the social inclusion of disabled people. They believe that in order "to achieve a liveable, fearless and equal society for all people including people with disabilities, a public Mind Change is required".


Finland has a plan to close down all institutions for people with intellectual disabilities by 2020 and that by 2016 no more than 500 persons will be living in institutions.  

The close-down of these institutions is a necessity for Finland to be able to ratify the UN convention of the rights of persons with disabilities.  


The spring meeting of the AER Social Policy and Public Health Committee took place in Joensuu, Finland on 19-21 March 2012.  The meeting was an invitation of the region of North Karelia. AER members joined the Conference on perspectives on ageing that was organized in the framework of the European Year 2012 and focused on health and long term care with workshops on equal access to quality care, multi-sector cooperation and empowerment of the users in the development of products and services. 

This conference was held on March 20th and launched AER's work on Active and Healthy Ageing, a key political priority for the Committee in 2012 and part of AER's commitments towards the European Year 2012. 


Over the past three months, the European Commission has run a public consultation on a European Accessibility Act. The Disabled People's Rights unit within the Directorate-General for Justine, who are leading the consultation, explained that this process is part of the preparatory data collection that will underpin the impact assessment for the development of a European Accessibility Act (EAA). The objective of the EAA will be to improve the accessibility of goods and services in the European market.  


Sergey Drozdovsky

The Office for the Rights of Persons with a Disability (ORPD) in Minsk invited ENIL's executive director Jamie Bolling to Belarus. The visit took place between 25th and 29th February 2012. The theme for the visit was "What is Independent Living and why is it needed?" The message was communicated through several gatherings bringing together disability organisations and other stakeholders.  

Role model


Aaron Abbey, from Ireland



Danijel Spasojević

[email protected]

Ljubljana, 31.1.2012


Daniel Spasojević is a 26 year old man. When he was 12 years old he was diagnosed with muscular dystrophy. Until recently he lived with his mother in an apartment in Celje where his mother assumed the role of family carer. This means that she provided assistance to him 24 hours a day in return for a minimal income.  For this Daniel could not be more grateful to his mother, as he recognises that without her he could not have obtained everything he has today...



As most of you know, ENIL was fortunate enough to be included among Europe's leading universities and some of the key NGO networks that connect social service providers and service users, in exploring theoretical frameworks and good practice examples of innovation in social services.


The consortium partners are currently collecting innovative practice examples and reviewing academic and non-academic literature in 13 languages.  ENIL is focusing on papers in English, French and Croatian.


In our last newsletter, we asked for examples of innovative services that you either receive or know of.  We are now asking you to support our efforts in collecting and reviewing appropriate literature.


Please let us know if you have evaluations, user/beneficiary surveys, service specifications, and/or other documents that you would like to share with us that relate to innovative social services.


Also, if you have ideas on how you can support our effort and contribute to Europe's knowledge about innovation in the social sector, please contact our researcher Sanja Nikolin at [email protected] , copying in ENIL's Executive Director Jamie Bolling, [email protected].

We will soon be coming to the end of the data collection phase, so please hurry with your contribution!


The next time you hear from us, it will be us sharing what we've got with you.  We hope that you will find our materials and examples as inspiring and fascinating as we do.





EDF is seeking a Human Rights Officer with good knowledge and experience on human rights, non-discrimination, and equality including gender equality issues. The ideal candidate is:

  • committed to a human rights/social model approach to disability
  • understanding and knowledge of the United Nations Convention on the rights of persons with disabilities
  • with a good understanding of working in the political and civil society environment
  • He/she is able to work effectively in English and French and to assimilate and communicate information.
  • The knowledge of EU policies, EU institutions and procedures will be an important asset.

The European Disability Forum (EDF) is the European umbrella organisation composed of and led by persons with disabilties, representing the interests of 80 million disabled persons in Europe. The mission of EDF is to ensure persons with disabilities full access to fundamental and human rights through their active involvement in policy development and implementation in Europe. EDF works closely with the institutions of the European Union (EU), the Council of Europe and the United Nations.


More information on EDF website here



At the European Network on Independent Living we were very sorry to hear of the passing of Prof. Jim Mansell, from the Tizard Centre at the University of Kent on 13 March. Jim was a member of the Advisory Council of the European Coalition for Community Living (ECCL) and was very active at the European level in advocating for the right to live in the community for all. He was a great supporter of ECCL since its establishment in 2005 and has contributed hugely to putting pressure on governments across Europe to close down institutions for people with disabilities and develop services in the community. Jim will be greatly missed by all. Our thoughts are with his family and friends.



Unfortunately Professor Colin Barnes resigned from the ENIL board finding it difficult to juggle all his engagements with retirement on the way. The existing board following ENIL's constitution voted unanimously to fill the vacant spot with Germano Tosi from Turin, Italy. Germano has been a member of ENIL since 2010.   


International Project: Supporting young disabled people to become future leaders of the Independent Living Movement!


As a young disabled person, what does 'Independent Living' mean to you? 


Would you like to know more about the rights of disabled people?


Do you want to feel empowered and have a voice to promote your views?


The European Network on Independent Living (ENIL) advocates and lobbies for Independent Living by promoting the values, principles and practices to make full citizenship of disabled people a reality.  One of the priorities for ENIL is to increase the involvement of young disabled people in the Independent Living movement, which is why ENIL has established a project to increase youth participation throughout Europe. This project is supported by the Council of Europe Youth Department.


The project will be a weeklong study session at the Council of Europe Youth Centre, with the purpose of encouraging and supporting young disabled people in advocating for human rights in their countries and at European level.  Participants will have an opportunity to gain a better understanding of disability issues and acquire skills to promote the views of other young disabled people from their country. The session will be delivered by a group of young disabled people from the UK, Iceland and Bulgaria with experience in working with young people in their countries and internationally.


ENIL hopes to create future young leaders of the Independent Living movement and will continue to provide support through an established ENIL Youth Network.


Participants must be between the ages of 18-30 and consider themselves to have an impairment.  The study session will take place between the 21st October and 28th October 2012 in Strasbourg, France, and will be in English; therefore participants need to have a working knowledge of the English language.  Participants must also be from one of the 47 Member States of the Council of Europe (not to be confused with the European Union). You can find a list of the countries by clicking on the map at the Council of Europe website


Regardless of what impairment you have, ENIL encourages young disabled people to apply and will meet the access needs of all selected participants, including the travel expenses of Personal Assistants.  Please note that participants are required to pay a 50 Euro enrolment fee to the Council of Europe Youth Centre if the application is successful; no fee will be charged to Personal Assistants.


If you would like more information about the project or wish to receive an application form, please contact: [email protected]

  or visit ENIL: 


The deadline for applications is 10 June 2012.


Thank you,

Miro Griffiths

Member of the Project Programming Team


Download the FAQ

Download the application form


 ENIL Membership


Thanks to everyone who has joined and signed up for ENIL membership. Anyone who would like to join us this year please do so as soon as possible.


Special Arrangement: Due to the current austerity measures, there is a special price of 20 Euro for any organisation that wants to join ENIL but may not have the funds in the current climate. This price is also available for individuals as well. This is a limited offer and will run until the end of April 2012. Please email the secretariat if you wish to avail of this offer ([email protected])



Being a member of ENIL means that you get the ENIL Newsletter every month. Become part of the Strasbourg Freedom Drive- every two years at ENIL we march to the EU Parliament with our demands. Get in contact with ENIL's role models who are willing to share their experiences. 


Being a member of ENIL means being part of an exchange of knowledge, for example about international policies or how to start a user cooperative. Empowerment to organize your personal assistance, for those of us with intellectual disabilities access to the JAG model with a service-guarantor.


Please click here to download an application form.