Freedom Drive Notes Meeting at EU Parliament
Thursday, 24 September 2009 Last Updated ( Monday, 18 January 2010 ) Freedom Drive 2009: Making the Rights of persons with disabilities a reality in Europe
Wednesday the 16th of September between 15:00 and 17:00
Place: European Parliament – Louise Weiss Room N1.4
ENIL – European Network on Independent Living and CIL Dublin in cooperation with EDF - The European Disability Forum invite Members of the European Parliament including past and possible future members of the Disability Intergroup to a discussion with The Strasbourg Freedom Drivers. The purpose of the session is to keep Independent Living high on the agenda as well as the ratification and the implementation by the European Community and European Member States of the UN Convention for people with disabilities.
Independent Living is a philosophy and a movement of disabled people who work for self-determination, equal opportunities and self-respect. Independent Living demands the same choices and control in every-day lives as our non-disabled brothers and sisters, neighbors and friends. For example to grow up in families, go to the neighborhood school, use the same bus as neighbors, and work in jobs that are in line with education and interests.
Program:
Chair: Richard Howitt – MEP – President of the European Parliament Disability Intergroup
Panel discussion: Member of CIL Dublin - Michael McCabe, Board Member of the EDF and President of SUSTENTO “The Latvian Umbrella Body for Disability Organisation” – Ms Gunta Anca, JAG Association - Cecilia Blank and Mattias Börjesson, ECCL Coordinator - Ines Bulic and ENIL board member Corina Zolle
15:00 – 15:10 Welcoming speech
15:10 – 15:40 Chair/Panel introductions
15:40 – 16:30 Free discussion/debate
16:30 – 17:00 handing over of the ENIL demands to President Jerzey Buzek – and summary of conclusions
1. Welcome and Presentations
Richard Howitt (MEP Labour, South of England) welcomed all and said he was pleased to work with ENIL. Richard will be the future leader of the disability intergroup and urged all present to ask their MEPs to join the disability intergroup to help raise the profile of disability issues. Richard said that independent living was now included in the European parliament and understood. The UN Convention (CRPD) was the first human rights convention to specifically target disabled people and was welcomed as was the directive on equality which was extended to include areas and events outside the workplace.
Presentations were given by the panel members – see separate notes for panel presentations.
Calls were made for deinstitutionalisation and for consultation with disabled people and organisations run and controlled by disabled people (such as ENIL) to develop a better awareness of the issues that affect disabled people in Europe.
2. Questions and comments from Freedom Drivers
Questions and comments from the floor included contributions from many countries
France:
questioner was French but had lived in Sweden for 10 years and wanted to speak about the situation in France. Many disabled people are in institutions in France. The French government are creating 50,000 more places in institutions in years to come- this means the organised segregation of disabled people at the level of the whole country- very few people have personal assistance in France, only the employed elite. As if there are not enough disabled French people in institutions in France many disabled French people are also sent to Belgium where there are even more institutions- the medical model of disability is very powerful in France.
Sweden:
‘Assistance doesn't make us sick like patients. To get out of this situation we need to work together at the European level. As disabled people we need control over our own lives to live the life we choose'
The number of people in institutions is rising directive of 2004 allowed accessible travel, yet too many exemptions granted so there was no place for ramps ect. Swedish disabled people still cannot get on the bus because there are no boarding aids- implementation is behind/slowed because the government were too generous in passing exemptions.
Disabled People International: There should be more recognition of human rights; here we have over 400 disabled people in parliament. Article 6 of the Convention needs to be gender specific, need more data on women and girls and men and boys as separate groupings. Disabled women often experience violence in their lives. We need a directive for disabled women and men.
Bulgaria: ‘We are in competition with France regarding institutions and money spent on these, then people go to what are different types of institutions called : day care centres, sheltered housing, group homes- all institutions, can we be assured that not a single cent of European money goes into these- they are not community living or independent living'
Norway: Demand number 5 development of independent living programs- schools, buildings are still not accessible- why are governments not using universal design-criteria must be :to set up all new public buildings according to universal design principles.
Spain: 1st time at Freedom drive- ‘new law in Spain creating dependency not independency' the government want assistants to be sanitary experts. But we are the experts on our own lives'
Belgium: N. Hadad: “For a small country we have a complicated situation:
We have 3 different governments with each of them its own parliament, the Flemish, the Brussels and the Wallonisch(French speaking) one. Each government has its own legislations and accords it's own Personal Assistance Budget.
Flemisch side: +/- 1800 people have an PAB
Wallonisch side: 80 people have a kind of PAB.
Brussels: it's still an experiment which involves only 8 persons.
In our capital of Europe more than 600 young disabled people are in institutions for older people waiting for a better and suitable place.
In Flanders more then 4000 people are on a waiting list for the personal assistance budget and wait on the right to live somehow independently.
So we from Belgium insist that it's very necessary to have a European Law, directives, conventions to implement as good as possible art. 19 from the UN-convention and more.
We need your European support to make those differences disappear whatever language is spoken.
In Flanders we need to resolve the problem of the waiting list because during all that time, those people are not leading a normal life but they are just surviving! Help us and thank you!”
Ireland: two points regarding transport. Point 1 I expected to be arrested because I refused to get off the plane because they wouldn't give me my own powered wheelchair- it's a disgrace! This was in Paris and this is also an annual event every year when I go to a rehabilitation show in Germany,
Second point: Our national bus company bought 200 accessible coaches however nobody can get into these accessible coaches because they haven't put foot panels in town. If you do not live in Limerick, Dublin or Cork there is no public transport- this promotes isolation and discrimination.
Slovenia: We have spent 18 years striving to get personal assistance and independent living in Slovenia. I am happy to hear that states bigger and richer than Slovenia have the same problems. The UN Convention is important, but must be made to work. Sheltered homes and institutions are still called independent living- We are having a law for independent living and personal assistance but it is far away from our wishes and our understandings of what independent living and personal assistance is- Slovenia were one of the first to sign the UN Convention, yet still there is no accessible transport, there are no accessible schools.
3. President of E.U Parliament Jerzey Buzek joins us to accept the ENIL Demands for 2009
Welcome to E.U Parliament president Jerzey Buzek. Richard Howitt said that Freedom Drivers were honoured that the president had taken time to come directly after giving his inaugural speech. The president tells how surprised he is to see so many people, he expected 20-50 people and said 'the number is fantastic' The President went on to say:
‘Its extremely important for Europe and for citizens that disabled people are represented. And important that in our parliament we can do a lot-You have a fantastic representative sitting here with you (Richard Howitt) Civil society and how you represent your desires is very, very important to debate for you- we are open on everything you want to address, Please contact your MEPs- We feel solidarity, we are all the same citizens of the E.U. I am happy to sign the freedom drive together with freedom drivers'.
The President and Richard Howitt then moved to the centre of the hall to accept the ENIL demands from Bente Skansgard ENIL President and Jamie Bolling Chief Executive of ENIL, and to hear a speech by Jamie Bolling. The president then asked for photos.
4. Questions and comments
More comments and questions followed from freedom drivers.
Belgium: ‘I'm from a family of seven children five were born disabled- on behalf of my brothers and sisters we will never give in so you'd better do what you have promised'
Greece: Everything we've discussed is included in the UN Convention, everything should be included in all member states.
Austria: I am here with 6 colleagues- we are glad to have personal assistance. Personal assistance is a human right. It must be possible to make it for all people. More than one of our members has died because they did not get enough Personal assistance. Please stop this!
Lithuania: We are happy to be here but sorry to say bad things about our country. We have no personal assistance but 3 million disabled people, still many people live in institutions. These are nice words of governments- but reality is in the institutions and walls to enter institutions. Existing community based services are less developed than in other countries and now there is less spending on these and a lack of promotion of them.
Sweden: Free movement of labour is prevented because of lack of portability of personal assistance. For example a woman from Finland was employed in Brussels, she had no money from Finland and in Belgium there was nothing available, she had to have her mother to assist her for six months, then the situation became unworkable. When will there be portability of services?
Latvia: We are a small delegation from Latvia and face similar problems to others but you may have at least a small amount of personal assistance and accessibility. In Latvia there is no personal assistance and almost no accessibility. It's very important to focus on small countries and Eastern Europe and work together. We need to distribute information and exchange knowledge for example with other countries such as Sweden and Germany.
Portugal: Independent living is not understood in Portugal. In Portugal there is no Personal assistance system- institutionalisation is usually the answer to situations such as mine.
England: Many might think England is more developed than other countries but group homes which are called independent living homes exist- even in England lots of people are still incarcerated, it is not just in Eastern Europe – we still have a lot of work to do.
5. Richard Howitt-summary of conclusions
UN Convention
In response to points raised on the CRPD Mr Howitt said: We will do what we can do in parliament to ratify the convention and will make sure that it is properly implemented. We need to make sure that we give the right amount of money, get reports, scrutinize so we know that countries are implementing this properly too.
Institutions
In response to the request that ‘not a cent of European money is spent on institutionalising disabled people' Mr Howitt said that criteria were in place to prevent this, however, it was clear that they were not working as well as they should be, this will be reviewed to make sure that European monies are not spent on institutionalizing disabled people
Healthcare and portability of Personal Assistance
Healthcare should be provided for disabled people where they cross European borders. We also have in place an historical case which raises the issue of portability of personal assistance, so that everyone has the right to take their personal assistance packages with them
Education
There is a European vote on the right to inclusive education- which has all but succeeded however Germany is blocking the directive, urges German Freedom drivers to lobby their MEPs to change this situation.