Germano Tosi – new ENIL board member since February 2012

March 29, 2012 under ENIL Board, IL activists, SRT

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. Other current positions are:

  • Co-administrator, creator and webmaster (as a volunteer ) in info-handicap office at the Townhall of Carmagnola (Turin) www.handicarmagnola.it , started in 2001
  • Member and consultant in the Coordinamento Diversabilità at the Townhall of Carmagnola  (general issues about disability, campaigns for promoting rights and equal choices for pwd, personal assistance programs access,  workshop programs with the local social services and public administration, schools and job office), since 1999
  • President and legal representative of ENIL Italia (European Network on Independent Living) www.enil.it , since 2011
  • Vice-president and webmaster of Associazione Consequor Onlus per la Vita Indipendente www.consequor.it , since 2005
  • Representative ENIL Italia Member on the National Observatory of Person with disabilities (Group 3: Independent Living, Autonomy and Empowerment of Pwd’s

With a background in industrial management Germano is an asset to the existing board.

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After-birth abortion or the danger of thought experiments

March 28, 2012 under Human Rights, News, WRT

“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.

In the article, the two also speak about postnatal abortion of children who became ill after the birth. “Some diseases are difficult to detect before birth, or develop only later. Many parents would have chosen abortion if they had known earlier that their child was ill.”

“One example is Down’s Syndrome. Approximately 36% of the parents only know after birth that their child has the syndrome. But meanwhile, not only the parents but also the State has to carry the burden of care. The public interest – that of the parents and society – has priority over that of the child”, said Giubilini and Minerva.

The authors defend that statement by saying that newborn babies, like embryos, have no personality and therefore no sense of their own. Therefore death causes them no moral damage.

The article caused a storm of protest almost immediately and led to the authors receiving death threats. The editor of the Journal of Medical Ethics defended the authors by arguing that they had written down “a thought experiment” and do not necessarily agree with their own reasoning.

‘Absurd’

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Irish MEP’s Discuss European Union Austerity Measures

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.

Paul Murphy, MEP was moderator of the second panel which focused on ‘The threat of cuts to the rights of persons with disabilities at the European Level’. Paul Murphy is a member of the Socialist Party in Ireland and is part of the GUE/NGL parliamentary group. This hearing was his first introduction into the area of disability. Paul Murphy said that for him “this is the start of the process of becoming more active in the whole area of disability”.  Mairead McGuinness, MEP is a member of the political party Fine Gael in Ireland and is part of the European Peoples Party (EPP) parliamentary group. She has a long standing interest in disability issues. She supports agencies that work on the ground in EU countries to achieve deinstitutionalisation by raising the issue in the European Parliament.

Peter Lambreghts, ENIL and Onafhankelijk Leven and Paul Murphy,MEP

One of the first issues that I discussed with Paul Murphy was how Europe’s austerity measures could impact on one of the main objectives of the Disability Action Plan (DAP), which is to ‘make equal opportunities for disabled people a reality’. Paul Murphy described how the gap between people’s aspirations and reality is growing as a result of the current financial crisis.  “Unfortunately, the impact of the actions of the Commission and the local government is quite vast and with the crisis the gap has grown even bigger.” He described the situation in Ireland and how those that are most affected by the crisis are moving further away from their hopes.

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Remembering Erik Ljungberg

March 28, 2012 under ENIL Board, ENIL Members, IL activists, News

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.

Erik was a man with many talents; he also set up and edited the popular blog FullDelaktighet.Nu – in favour of full inclusion for disabled people. This was an effort to influence the last elections in Sweden. Erik had run his own art gallery, was a programmer and a strong entrepreneur. Many people who use personal assistance do so through AiAi, the administration program he designed for personal assistance.

His achievements as an activist for accessibility made him well known not only in Gothenburg but also throughout Sweden and won him the STIL prize for civil courage in 2005. He was able to expose discrimination and to get his message across in an intelligent and funny way. This is only a glimpse of his achievements.

Erik was a devoted, diplomatic, kind and intelligent person who won the hearts of many. We in the movement will miss him greatly. I personally will miss Erik as a great friend. Erik may you rest in peace……

 

Those wanting to send condolences can send them via Jamie.bolling@enil.eu. I will send them on the Erik’s family.

Jamie Bolling – Director of ENIL

European Network on Independent Living

 

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WASSILIOS KASSIOULIS BIO

October 20, 2010 under About ENIL, ENIL Board, IL activists, Links


Wassilios Kassioulis (Greece)

Wassilios Kassioulis (Greece)

Background:

Wassilios Kassioulis holds a Degree in Economics from the University of Hamburg, Germany and a qualification in Portugueses from the Universidade Minas Gerais, Brasil. He speaks several languages: Greek (mother tongue), German, English, Portuguese and French.

Career:

In 2007 Wassilious was a trainee on the programme for people with disabilities at the European Parliament’s Equal opportunities unit, Luxembourg. Since 2006 he has been a member of the European antidiscrimination council in London, England, where he has demonstrated extraordinary communication skills in promoting the cause of disabled people in the EU.Since 2003 Wassilious has been voluntary CEO of Mobilcom shareholder protection group, in Hamburg, Germany, where he gained valuable experience in writing press releases, holding interviews and strategic advisory. He has previous experience with Teanscend information trading GmbH, in Hamburg Germany, where he was of head of sales for Greece & Cyprus. And from 2005-06 Wassilious was a member of the supervisory board of Actior AG. (Brokerage Company)

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JAVIER ARROYO BIO

October 20, 2010 under About ENIL, ENIL Board, IL activists, Links
Javier Arroyo (Spain)

Javier Arroyo (Spain)

Background: Javier Arroyo Mendez graduated from Universidad Autónoma de Madrid (UAM) with a Degree in Sciences Physics his specialty being Theoretical Physics. His native tongue is Spanish and Javier also possesses a high level of English. He has extensive IT skills & knowledge which include programming, network security & devices.

 

Career: Since 2008 Javier has been a Project Manager, Business Analyst at IBM Global Technology Services. He has been a Speaker at the Users Panel DRT4ALL (International Congress on Digital Homes, Robotics and Telecare for All). Javier was highly involved in the preparation of the “Walks for the visibity of the Functional Diversity People” at Madrid over the last four years and is a Member of the Users Working Committee at the “Oficina de Vida Independiente”. He is a User of the “Oficina de Vida Independiente” (Centre for Independent Living of Madrid), and a member of “Foro de Vida independiente” (Independent Living Forum).

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SUE BOTT BIO

October 20, 2010 under About ENIL, ENIL Board, IL activists, Links
Sue Bott (UK)

Sue Bott (UK)

Background: Sue Bott has a First Degree in Political Theory and Institutions, and a Master’s degree in Public Service Management. Sue is a disabled person with visual impairment from birth, has been active in the disability movement in the UK for many years. She lives by the sea in south east England and has two grown up children.

 

Career: Currently she is Director of the National Centre for Independent Living based in London. Previous to that she spent fifteen years working for a Centre for Independent Living (Shropshire Disability Consortium) initially as its development worker and latterly as its Chief Officer.

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PETER LAMBREGHTS BIO

October 20, 2010 under About ENIL, ENIL Board, IL activists, Links

peter.jpg

Background information: Peter Lambreghts has very strong language skills, in both the spoken and written word. He is fluent in Dutch, English & French and possesses a good working knowledge of German and Spanish. Peter attended the Universitaire Faculteiten Sint Ignatius Antwerpep, gaining a BA from the Department of Germanic philology.

Career: Currently Peter is a member of staff for the Expertise Centre Independent Living, in Gentbrugge Belgium. Previous to this he was the staff worker & user representative coach for Vlaams Gebruikersoverleg voor Personen met een Handicap (Flemish user’s platform for people with a disability) He has held various positions over the years which included roles such as: customer relations, team leader & advanced coach of operators, staff-support, administration, controlling, planning and marketing. He has authored several papers and articles on topics related to disability.

Peter chairs the lobby group WTK (Werkgroep Toegankelijk Kalmthout). He is a Board member of: The Municipal Council for local well-being, Bol-Budiv and PAB Ambassador (defending the rights of the Flemish personal assistance users), and the strategic cell of VFG (Vereniging Personen met een Handicap)

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VIBEKE MAROY MELSTROM BIO

October 20, 2010 under About ENIL, ENIL Board, IL activists, Links
Vibeke Maroy Melstrom (Norway)

Vibeke Maroy Melstrom (Norway)

Background information: Vibeke Melstrom holds a BSc in sociology & social work from Oslo University College, NKS. She attended Halden Teacher Training College and from 1983-1986 Vibeke attended Ski A-Level College with General Studies and Language being her major.Vibeke has undertaken various management and leadership, training courses including: Persuasion and Influencing Skills, Budgeting and Financial Accounting, Practical Coaching Skills for the People Manager, and Understanding Employment Law and Workers’ Rights.Norwegian is Vibeke’s native language and she also has an excellent knowledge of English, Swedish and Danish.

Career: Vibeke currently hold the post of Managing Director of ULOBA, which is an Independent Living cooperative on Personal Assistance. She is one of the founding members and a key figure in building and developing the organisation. ULOBA is the controlling hub for an enterprise made up of 5 sister companies across Norway. Vibeke also regularly run’s courses and acts as a keynote speaker at seminars across the world.

Vibeke has been a member of: Human Rights Alliance from 2005-2010, Health & Rehabilitation Committee 1997-2001 and is currently president of ENIL with Kapka Panayotova

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KAPKA PANAYOTOVA BIO

October 20, 2010 under About ENIL, ENIL Board, IL activists, Links
Kapka Panayotova (Bulgary)

Kapka Panayotova (Bulgary)

Background: Kapka Panayotova has a Masters Degree in Economics and in Civil Engineering from Warsaw University in Poland. She also graduated from English language school in Sofia. Kapka has been involved in numerous projects as a trainer on disability awareness, project proposal writing and project management.

Career: Kapka is a Bulgarian disability leader and one of the founders of CIL – Sofia. Kapka is a strong human rights advocate and promoter of social inclusion through public policies. She is been involved in research projects – as member of the Academic Network of Experts on Disability (ANED) and International Disability Rights Monitor. She has been a Board member of ENIL since 2006. Kapka has been appointed ambassador for the European Year for Combating Poverty and Social Exclusion (2010).

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