[Slogan chanting in Spanish]
[Slogan chanting in French]
Joe Bollard: In the last week of September 2003 people with disabilities from all over Europe converged on Strasbourg. The idea, to march to the European parliament building. This event formed part of the European initiative towards the promotion of Independent Living for people with disabilities. The Strasbourg Freedom Drive as it was called saw the largest ever number of people with disabilities to converge on the European Parliament.
The event is part of a European network on Independent Living strategy as part of the European Year of People with Disabilities. Its aim, to highlight a number of key issues around the services and rights of people with disabilities. Many of these, centre around the lack of a cohesive European-wide policy for personal assistant services for people with disabilities including the basic right to secure such services. Other critical issues being focused on included the need for more effective representation of people with disabilities in European social exclusion strategies, as well as action to address the growing number of people with disabilities being institutionalised, and the significant human rights abuses that many people with disabilities experience.
Crowd singing: We shall overcome. We shall overcome some day. Oh, deep in my heart, I do believe. We shall overcome one day.
Joe Bollard: Buon giorno from Italy.
Woman: From Italy, yes.
Joe Bollard: What are we going to do today?
Man: We are going into the parliament.
Joe Bollard: Yah OK. And what will we do when we get to the parliament?
Woman: We ask Directiva, I don’t know in English, about Independent Living. Now.
Man: [Italian words.]
Man and Woman: We are three blind from Italy and one Norwegian.
Joe Bollard: Three blind and one Norwegian and you’re marching to the Parliament to get rights for other people with disabilities as well as blind.
Woman: Yes, yes, yes, yes.
Joe Bollard: Grazie.
Man: Prego. Prego.
[Crowd chanting in Italian, etc.]
Joe Bollard: Celia.
Joe Bollard: You’re marching along with us today to the parliament.
Joe Bollard: Where are you from?
Joe Bollard: So you are working here as an assistant.
Joe Bollard: What are you thinking of it now as we go towards the parliament. What are your feelings on all of this?
Celia: I think, I think it’s nice that we do it.
Joe Bollard: Yah?
Joe Bollard: How many of you from Norway are there?
Joe Bollard: And how did you, did you travel over land to get here?
Celia: Yah. We took the bus.
Joe Bollard: And how many people with disabilities are in your group?
Celia: In my group, we are, let me see, six.
Joe Bollard: What about people with disabilities in Norway. How are they treated, people with disabilities?
Celia: Because of their organization called ULOBA they are starting to get treated very well.
Joe Bollard: Things are improving?
Joe Bollard: Yah. But they still need to improve more?
Celia: Yah, of course.
Joe Bollard: What about the personal assistants? Does that need to be improved in Norway?
Celia: Yah, I think so. They should have more hours.
Joe Bollard: Tusen tack.
Celia: Var så god.
Joe Bollard: Martin Naughton, are you the leader of the Irish group here?
Martin: Well I get the blame anyway for it. But I was the link, Joe, with the European Network of Independent Living, so, I’m just the Irish link. We’re actually, this is kind of an action day. And we’re going to take days like this over the next number of years. And basically it’s to immediately stop the dilution of Independent Living and the rights of people with disabilities.
Joe Bollard: But is there a dilution of, of?
Martin: Oh, I think there is definitely. And it’s very much now focused on funding. You know it’s very much, the tie [problem] is money, and we can see that back in Ireland very much. We were promised legislation, every party in [local name] promised it, they all signed up to it, that goes right back to 1996. We were all part of the consultation process and every year it’s another curve ball they give us. You know and they’re getting mileage out of it. And it’s time that they stopped playing silly games.
Joe Bollard: OK so we’re marching, demonstrating, it’s a day of action, to the European parliament. What are we going to do when we get there and will they take any notice?
Martin: Well first of all I think it’s a day for ourselves, to come together, people from all over Europe. So there’s that part in it as well. It’s the unity of disability groups throughout Europe and this is the start of it. Now whether they will listen or not, perhaps not, but we also know that next year, you know, next June is the election for members of Parliament again and we might be, we might have a say in that, right?
As well as that, we are going today, two of our speakers are asked to address the inter-group in Parliament, all right, and that’s the group that focuses on disability issues and they’re going to, they have about twenty minutes between them and we’re expecting about maybe anything up to 160 MEPs to be at that. So all in all, we can but try at this stage, if they don’t listen now perhaps they’d listen soon.
Francisco Chico: Hola, buenos dias. Bonjour. Hello. I’m coming with a group from Spain. In Spain we’ve got the same problem. We don’t have direct payments. Therefore Spanish people can’t come here because we’re stuck in bed. We’re stuck in our cities. Les persons d’Espagnol ne peuvent pas venir ici parce qu’ils n’ont pas de facon de sortir de leurs lits. De facon de sortir de leurs vies.
Spanish people can’t make it here because they’ve got no way of getting out of their beds or getting out of their cities. So what I see here is not a few people. I see the spirit of millions of people. [Translation of the previous words into French and then into Spanish.] Our rights are being violated in every single instant. However what I see, what I see is that we will win. We will win one day because of three reasons. Because the light of truth, justice and dignity is on our side. [Translation of the previous words into French and Spanish.] Muchas gracias.
Joe Bollard: The next speaker was from Germany.
Carina Zolle, CIL Mainz: People with extensive disabilities, that is those who need assistance from other persons in their daily lives constitute the group with the least education, employment, income and social contacts. The reason is not our lack of physical and intellectual capabilities but lack of access to mainstream education and training, lack of barrier-free housing in the community, lack of accessible transportation, lack of barrier-free workplaces and reasonable accommodations, lack of personally directed assistance in one’s natural living environment, and outright prejudice and discrimination.
Conditions that force us and keep us in residential institutions and parental homes for lack of acceptable alternatives rob us of mainstream life and undermine our self esteem and thus create self-fulfilling prophecies. We believe that individuals who have acquired their disability at an early age are particularly prone to get caught of this self-reinforcing downward spiral. One of the keys for breaking the vicious cycle is personal assistance.
An estimated number of one million disabled European citizens are warehoused in residential institutions, marginalized and invisible. For this forgotten population, personal assistance is one of the keys for moving back to the community. At the same time, community based personal assistance policies and programs enable many assistant users to become gainfully employed, allow family members to return to the labour market, and provide numerous employment opportunities for personal assistants.
Joe Bollard: And the next speaker was from Norway.
Man: This is a really great vacation. I think it is one of the best times in my life. We’ve come a long way, we have a long way to go. The road is long and the fight will be very, very, very hard. But there is only one outcome of this. We are going to win. Because why? Because disabled people are born fighters. We’ve been fighting all our lives and we’re going to continue to fight until we get our rights. Are we going to win?
Joe Bollard: Following the march to the European parliament and the speeches outside, the group then moved on into the parliament where they met members of the inter-groups committee. Two members of the Strasbourg Freedom Drive group were designated to address the inter-groups committee, John Evans and Ann Marie Flannigan. In his opening remarks, John Evans said how he and all the members of the Strasbourg Freedom Drive group, who came from many parts of Europe, were delighted to be in the Parliament. He asked the question, why are we here?
John Evans: As a representative of the European Organization of Disabled People who need Independent Living and personal assistance, we felt it important to bring these issues to the European Parliament at this time. We are a human rights, grassroots organization who are very much in touch with the needs and wishes of disabled people in all our countries and feel that the eight key demands (see http://www.enil.eu.com/sfd/8demands.htm) that we are bringing here are very much the current wishes of what disabled people are demanding in all our countries.
First of all, let me just define what personal assistance is and I’m sure people are beginning to wonder what that is already. Personal assistance is very important. Personal assistance: I wouldn’t be doing what I am doing right now if I didn’t have my personal assistance. In other words, its all the help, the support, and the assistance that I need in my life in order that I can be like everybody else and live like everybody else. So it’s that support I require to be able to do what I need to do. And most of us, most of the disabled people that have come here, have come with that kind of support, so personal assistance is something that we want to be made available throughout the whole of Europe.
Our eight key demands – lets look at personal assistance a little bit closer. We believe that the availability of personal assistance services is long overdue, as there are still many countries within the European Union who still do not have established and effective personal assistance services for their own disabled people. We felt that this issue was very pertinent this year as it the European Year for Disabled People, and it became one of our organization’s aims for this current year.
As personal assistance services are essential in enabling disabled people to live independently, we felt it was good for one, for the two declarations that have recently come up, the Madrid Declaration and the Tenerife Declaration, calling for Independent Living to be taken more seriously. We feel now it is important to build upon this recognition from these two declarations that have both come out within the last fourteen months and we also think that our eight key demands that we are bringing here to the European parliament fall well within both of those declarations.
Joe Bollard: John Evans then went on to say that as we speak there are many people with disabilities disenfranchised because they live in institutions. We believe, he said, that the self-determination and Independent Living should be a basic right for people with disabilities. He continued.
John Evans: The opportunities to live independently provide a sane alternative to institutionalisation which is both healthier and also more economic for the individual and for the state. As institutionalisation is part of the current framework of the social exclusion policies of the European Union, it makes common sense for the European Union to support Independent Living in the community as a viable alternative to disabled people being incarcerated in institutions.
As long as institutions exist, the spectre of disabled people finally ending up in one is a fear that haunts most disabled people throughout their lives. None of us can be casual or relaxed when we know that that still exists. Institutional life denies a person real citizenship and participation in the community. It also takes away one’s freedom. For those disabled people who have already experienced institutional living and have tasted that reality and the loss of control over basic decisions of their lives, know only too well that it is a large price to pay.
Joe Bollard: John went on to say that, “As I speak I shiver at the thought that right now, at this moment in time there are thousands of people with disabilities living in institutions throughout the whole of Europe. I dread to think,” he said, “what the exact numbers of people with disabilities are in institutions. It touches me deeply, especially as I have experienced personally some years in an institution over twenty years ago.
But I was one of the lucky ones,” John said, “I managed to find a way out and pioneered Independent Living in my own country. Lets just look at some of the basic human rights that are denied those people with disabilities living in institutions,” he said. “They are denied the right to have decisions about their own lives, when they get up in the morning, when they go to bed. They are denied the right to what they eat in the daytime. They are denied the right to have their own personal assistants. They are denied the right even for the opportunity sometimes to go to the toilet. This is part of the daily reality of people with disabilities living in institutions.” John Evans then went on.
John Evans: They don’t have the right to basic services, decent housing, and even sometimes their own money, their own pocket money or the money they might receive or the benefits they receive from the state are held in the offices of the administration of those institutions. This paints a bleak and gloomy picture which makes one realise why disabled people are fearful over the spectre of ending up in such places. And this is even without touching on what they might experience by living there, like physical, psychological and even sometimes sexual abuse. Disabled people find themselves victims of a system that disenfranchises them and keeps them at a poverty level, dependant on benefits, lacking opportunities in employment, training, and further isolated in their own communities because of inaccessible public transport systems.
From a social perspective, much of it stems from bad social policy planning, but the root cause is often fear, ignorance, and a poor attitude to including disabled people in the mainstream of life. There is a lack of commitment both by the European Union and national and local governments to address this problem seriously. We have to move beyond the world of rhetoric, what is just written down. We need things put into practise. This is clearly indicated in many instances where disabled people and their representative organizations are even excluded from any real involvement in the planning and development of appropriate service in their own regions or countries.
There is still a problem of fully understanding what real consultation and user participation is all about. It is however neglected at their peril. For disabled people will be there and we will be constantly reminding the authorities that we need to be included. So any social inclusion policy should include us and we won’t let people forget that.
Another right that we have in our demands to personal assistance is also the fact that when we talk about personal assistance services, it’s not just to disabled people wheelchair users, but it’s to all kinds of disabled people. People with mental health backgrounds, people with learning disabilities or intellectual disabilities as they are sometimes referred to in Europe. And as important right now with an aging population, to older people, there are some interesting Independent Living schemes now being pioneered and there is a project that ENIL is involved with that has pilot schemes in trying to develop Independent Living for older people in Spain, Italy, and in Greece.
The promotion of Independent Living or the implementation of the philosophy of Independent Living I think is also important. Independent living has been the catalyst really for the struggle for our human rights by disabled people. It has provided us with a framework with which we could both challenge and monitor the structures of our society. Independent living touches upon the nerve fibres of everything we do in our everyday lives. This is why it is so important, highlighting our needs and aspirations and at the same time it significantly provides us with a direction and a purpose to progress our overall movement and our own individual lives. Independent living has provided us with many answers and solutions to the problems of discrimination that we face. It has become the blueprint for survival and liberation for many of us.
Through the philosophy and practise of Independent Living, disabled people have been able to regain more control and power over our lives. We have been able to organize and develop our own organizations and at the same time operate more control and choice over our lifestyles by setting up our own personal assistance services. We encourage the European Union to support the implementation of the Independent Living philosophy.
Joe Bollard: The second speaker to address the inter-groups was Ann Marie Flanagan. She began by saying, “When we established the Independent Living movement nearly 35 years ago, which originated from disabled people in Berkeley California, we identified the necessary support that would enable us to achieve Independent Living.” She continued.
Ann Marie Flanagan: These include personal assistance, assistive technology, place of our choice to live, together with the right to education, employment, and family life. There are thousands of disabled persons around the world who can bear personal testimony to the ideology and reality that is Independent Living, and we are some of those people here today.
The distressing element in all of this is the fact that there are as many more disabled people incarcerated in institutions in your countries, without choice and without any guarantee of ever leaving these places, as there were before the Independent Living movement began. By institutions we mean all closed spaces where decisions are made about the person by the organization providing the service. These include residential care, long-term stay hospital settings, day-care centres, training centres, and sheltered employment.
We cannot impress upon you enough the absolute violation of human rights that occur when a person is, without choice, placed in these institutions. Further violation occurs when young, disabled people are forced to live in residential settings set up for older people who are often coming to the end of their lives. An example of this in Ireland is the reality of the Maguire brothers, who are both in their early thirties. They are forced to live in a hospice in Clare.
Both brothers have publicly expressed their desire to share a home and live together with the support of personal assistance, but due to the lack of their civil and human rights there does not seem to appear to be an outcome that will enable them to live the choice of life with dignity. The life changing experience of having personal assistance services and being in a position to make personal life choices is not valued, it’s not accepted or indeed understood in Europe and in our member states. This is evident by the lack of policies and legislation that gives the right to Independent Living services such as direct payments.
It’s evident by the number of people who are on a daily basis being placed in residential care and the increasing number of family members who seek carer’s allowance or the equivalent, to mention but a few. In the past, when we were spoken about by states and service providers, it was in the context of needing to be fed, to be dressed, to be toileted. Now when we talk about services, we do so in the context of going to university, getting married, having children, being promoted, having a political career, and all that is entailed in being an equal citizen and the rights and responsibilities that are inherent in that.
It is vital that we in the Independent Living movement continually promote the appropriate implementation of the philosophy of Independent Living. To achieve this, we are asking you to critically analyse the disability sector. We need you to do this so that you can differentiate the difference between Independent Living and other traditional dependency led services. Some of the indicators in differentiating between them can be measured by looking at the power structures and decision makers of those services. You might ask, are disabled people developing, managing, and monitoring our own services? You might also ask, does the service provide personal choice and control for the service user? If the answer to the questions is no, then it is not what we mean by Independent Living.
One of the actions taken by the Independent Living movement through eight countries is to develop a Centre of Excellence on the philosophy of Independent Living. We now have secured funding to do this. We have twelve months in which to produce criteria and standards to define Independent Living. I think Germany will be coordinating this initiative.
The results of this will be the template of measuring what is true Independent Living as determined by us in the movement. On completion of this piece of work, we need all members of the European Parliament to endorse it and to ensure that it is the only measuring tool under which funding, resources, and legislation is decided on. We can guarantee you that if existing resources, which are currently being spent on non-Independent Living services are re-distributed, then very little extra money will be needed to achieve full Independent Living for everybody.
Let me say once more, we are the only people who can determine the appropriate response to our full and equal participation in society. The international Independent Living movement is about all disabled people, from all states of all countries. I ask you all on behalf of everybody here and all other disabled people to actively hear what is being said today, but more importantly, to believe us when we say we know best what will enable us to achieve full, active, and participative citizenship. If you only take away one message today let it be: nothing about us without us.
[Chanting in Spanish.]
[Chanting in French.]
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