The first person to be inducted into the Hall of Fame is Martin Naughton. Martin is a disability activist from Dublin, Ireland. He has been a champion in the Independent Living Movement and was one of the people involved in bringing Centres for Independent Living to Ireland. He is Co-Executive Director of the European Network on Independent Living ( ENIL) and is based at the Secretariat in Dublin. He also works with Disability Federation Ireland ( DFI). Here he tells the story if how the first Freedom Drive came about, the main aims of the Freedom Drive and how it has evolved into the event it is now:
The European Year of People with Disabilities took place in 2003, and this was the start of Freedom Drive. The preparatory work really began in 2002 in response to the aims of the European Year of People with Disabilities, which although sounded very positive didn’t speak directly to people with disabilities and instead was aimed towards governments, researchers, carers and other groups. Furthermore there was no opportunity for people with disabilities to engage with the European Year of People with Disabilities other than in a tokenistic way.
In order to discuss this view of the European Year of People with Disabilities and potentially formulate a reaction, in early 2003 ENIL held a board meeting in Southampton. This meeting was organised by Cathal O’Philibin, an Irish disabled activist living in Southampton and user of PA services, and was well attended by many activists from both the local area and from abroad, many ENIL representatives and also the director of the Centre for Independent Living in Ireland Selina Bonnie. This meeting was to mark a revival in the spirit of ENIL and the beginning of a great independent living movement event.
It was agreed at this meeting to focus on one big idea for the immediate future, and this big (and seemingly crazy) idea was a Freedom Drive. At the time we decided to organise this event we knew that almost if not all of the funding for the European Year of People with Disabilities had been handed over to many researchers and organisations that were operating for people with disabilities as opposed to organisations of people with disabilities. Of course at the time ENIL had no money and not many of the other groups had either, but, between particularly ULOBA and the Dublin group, it was possible to dedicate some staff to gather energy and initiate a movement around this.
The whole idea of the Freedom Drive was to fulfil a number of possibilities. One aim was for people with disabilities to come together and exchange their life experiences, and this was to happen in a very informal way. We also wanted to gain a sense of collective movement and so we targeted Leaders in several different countries. It was agreed that all people attending the Freedom Drive would be doing so at their own expense; there was no compensation for time, travel, accommodation, or any other expenses. This was partly to support people to take control and responsibility for their own lives and get a first-hand experience of travel using public transport, aeroplanes, trains and so on. In that way we felt that it was action research, it was what mattered most of all. It was an opportunity to capture the lived experience of people with disabilities from all over Europe and express their experiences.
We were also putting together a list of demands; eight in all was the agreed amount and they were as follows:
- A European wide policy on Personal Assistance.
- Right to gain Personal Assistance services regardless of cost.
- Right to retain Personal Assistance funding with travelling, regardless of the length or purpose of the journey.
- Action to address the growing number of people with disabilities being institutionalised.
- More effective representation of people with disabilities in European Social Inclusion strategies.
- Promotion of appropriate implementation of the philosophy of Independent Living.
- 5% of overseas development aid is given to Community Development Projects for people with disabilities in developing countries.
- Action to highlight and address the significant human rights abuses that many people with disabilities experience.
The programme as it developed took place over four days, from Monday to Thursday. Monday was for arrivals and familiarising yourself with Strasbroug, finding out where all accessible transport was and how to get to the parliament. Tuesday morning we all gathered at a designated meeting point, a youth hostel. There was a tram that ran directly from outside the youth hostel to very close to the parliament. There was a huge and exciting turnout at the youth hostel, it gave us an opportunity to introduce ourselves, share some experiences, exchange t-shirts and other kind of national emblems. We had time to go through our eight demands and prepare ourselves for that evening’s meetings with our own local MEPs. Thursday was spent with the council of Europe.
There was a very exciting buzz in terms of going to meet local MEPs that afternoon. Of course the next day, Wednesday, we were having our march – for the first time ever a group of disabled people would come together and march on the parliament. We had really fabulous support from the local escorts. On the morning of the march, ULOBA provided us with t-shirts, which helped us greatly to realise that we were all one and that together we could be very powerful.
The march was a great success; there was an excellent turnout and as a result there was terrific energy on the day. Some of the MEPs joined in with us later in the evening, after we had gone into the parliament. It was very powerful to witness our own people on the plinth talking. There was interpretation into many languages so that everybody could be involved, and there were lots of questions coming fast and furiously from all corners. Many MEPs were present also, who had been encouraged to attend by people with disabilities. The President was very helpful and accommodating. He did not allow MEPs to filibuster and gave people with disabilities a good space to talk and say what they wanted to say. That session lasted for two hours. We had already started to grow in confidence but after this we felt really powerful. Then we had an opportunity to meet with many of the MEPs and the president of the parliament, Pat Cox, joined us for a session and encouraged the intergroup to do all they could for the issues raised.
Later that day we went back to the youth centre and had a big celebration. It was from this evening on that there would be a barbeque every Wednesday of the Freedom Drive, and ULOBA have sponsored it every year since. That first year we were happy with pizzas and wine in the room we had hired for the event. Anybody who was there would remember that it wasn’t the best facility in the world; it was an underground concrete building. Regardless of this we had a good attendance and sang to early hours of the morning. Those MEPs who could find their way joined in with us. That night we made a commitment and a promise that we would be back every two years and would continue to do so until we improved the lot of people with disabilities and also to carry reminders of people who could not travel. So we returned in 2005 and every two years since, with the numbers growing stronger and stronger each year.
Even with numbers growing each year we acknowledge that for many people it’s not possible for them to attend, or attendance is fraught with difficulty. Cost is a huge factor in determining whether someone can attend or not, for example travel and accommodation costs. Aside from cost factors there may be many factors that prevent attendance, for example the hassle and difficulty associated with making the journey can be simply too much for some people. Therefore we represent those who can’t travel also, and we believe that the Freedom Drive is something that we need to do until there is a significant change in attitude towards people with disability.
The most recent Freedom Drive took place in 2011, and regardless of the barriers to travel that many people face it was so well attended from countries throughout Europe. We had representation from Austria, Belgium, Bulgaria, Bosnia and Herzegovina, Croatia, France, Germany, Iceland, Ireland, Italy, Latvia, Lithuania, Montenegro, Norway, Poland, Serbia, Slovenia, Spain, Sweden and the UK.
The demands articulated at this Freedom Drive, which was organised around a central theme of Free Our People Now, represent fundamental issues that strike to the heart of everyday lives of people with disabilities who suffer many discriminations and barriers to participation in society. Nine demands in total were presented to the MEPs.
- Independent Living central to all European Policies.
- Respecting the UN convention on the Rights of Persons with Disabilities, with provisions on non-discrimination, accessibility, right to live in the community and personal mobility as the minimum benchmark for EU law and policy.
- Inclusion of people with disabilities through universal design and the abandonment of special solutions.
- De-institutionalisation – closure of institutions by 2020.
- Personal assistance for all in need.
- Freedom of movement.
- Independent Living in international development programmes.
- Full ratification and implementation of UN CRPD.
- Disabled People’s Organisations in policy making.
These demands have several common aims, for example that independent living is considered as a human rights issue. Furthermore all of the aims, in one way or another, address the rights of people with disabilities and also their desire to be fully participating members of their community and society overall. This cannot happen when people with disabilities are living in institutions and being segregated from mainstream society. Unless we demand full inclusion of people with disabilities in all areas of life, i.e. community living, policy making, travel, etc., people with disabilities will be invisible from society and continue to be discriminated against.
When we look back to consider the group that convened ten years ago in Southampton, organised by Cathal O’Philibin and attended by many disability activities, their achievement is remarkable in that they initiated an ongoing campaign that to this day still strongly represents the rights and desires of people with disabilities. ENIL has of course developed since the meeting in 2003 also, at the time ENIL consisted mainly of a board, however has expanded its work to become a true pan European organisation with coordinators operating across all regions of Europe.
Finally it’s important to mention, and to thank, all of the people who throughout the years have attended the Freedom Drive. The unification of people with disabilities throughout Europe can achieve real change and effect a positive influence for all people with disabilities. We hope to celebrate Freedom Drive 2013 with new friends and old, and look forward to seeing everyone there.