ENIL has launched a web questionnaire to ask what’s happening with the UN Convention in your country.

Do you think the Convention has made any difference? What do you think could strengthen the Convention? Have you seen any changes by your governments? Has your government asked an organisation with knowledge of independent living to help the monitoring process or a traditional medical based organisation? Have you seen any changes around article 19?

Help us to let governments know what we think about what they are doing (or not doing). There are just 13 main questions most of which are click through. Do you have 4 minutes? Go to:



Martin Naughton

I’m delighted to be writing this short introduction to the west region newsletter! Having a west region newsletter has many benefits but I’m particularly delighted is it marks a milestone in the journey of restructuring ENIL as an organization.

This journey began in earnest when the board of ENIL made the decision to restructure in mid 2009.

The new regional structure should ensure that ENIL has the capacity to empower members and to enhance networking and leadership opportunities.  It also ensures that ENIL is operating in a manner that is true to its status as a grassroots membership organisation. 

The board of ENIL have started the change by showing flexibility and leadership. The challenge for us on a regional level is to work together to achieve change in a cohesive way. We do it better when we do it together!

The newsletter and blog are platforms for you to share with others what you are doing. If you’re doing something good, by sharing it you are giving others the confidence to do something as well.

Are you having a march this year? Are you holding a conference? Is there someone in your organisation who would translate articles from English into your national language? Do you know any disability activists who would share their stories with us?

By working together as a region, we can bring life to the UN convention on the rights of persons with disabilities and turn policy into reality.

Before I go, I would just like to introduce some people who are very committed to making the west region work – Naoise Cunningham who is Development Officer with Carmichael CIL in Dublin (Irish National Centres), her colleague, Caitriona Kenny (see her interview), Debbie Jolly, based in Leicester in the UK, Jenny-Anne Lynch, Communications Officer with ENIL based in Dublin and Katharina Gintarra.

We owe a great deal to Katharina. Katharina is over with us on a student exchange for a three month period. During her time here she has been busy translating English reports to German; she has talked to the key activists in the eleven countries in the west region, finding out more about what’s happening and persuading them to engage more with ENIL. I’m not sure what we’re going to do when Katharina’s time with us is up at the end of May. You can read her article on ‘Person centred lifestyle planning.’

Look forward to seeing you all at the General Assembly in September. Remember, ENIL is your organisation!

Still, not everybody in our society has the same opportunities to make choices on an equal basis with others. But living independently means making your own choices! Self-determination does not mean that you have to live on your own, without any support. It’s about alternatives. Unfortunately, it’s not a reality for many people with disabilities. Most of the time they are confronted with other people making important decisions for them. That’s heteronomy! 

Biographies of people with disabilities are often structured identically. They start with a special kindergarten, continue with a special school and end up with working in a sheltered workshop and living in an institution. Besides this traditional way there aren’t many community-based alternatives to choose from.

The method of Person Centred (Lifestyle) Planning is one way to offer persons with disabilities these choices to increase their personal self-determination. The idea of the Person Centred Planning was developed in the 1980s in the US and Canada. But in lots of countries this method is still unknown. The core idea of the method is that people with or without disabilities get together in a future framing meeting thinking and talking about the dreams and wishes of the main person involved in the Person Centred Planning.

This circle of very important people in the main person’s life, like friends or parents, is called a circle of friends. They support the main person who always remains to be the decision-maker! Nobody is barred because of his/her disabilitiy or severity of disability.

Everybody is allowed to dream about their future and to make plans to achieve this personal dream. During the Person Centred Planning, which may include only one or sometimes more meetings, the main person builds up a picture of their future life and decides together with their supporters, the circle of friends, how this future life could be accomplished step by step. Together they create an action plan. The main person always takes the centre stage. It’s their life and they make the decisions. But they are not alone on their way. They have got their circle of friends who support them. That’s what self-determination forms.

This view is totally different to the traditional, care based view to people with disabilities. It’s based on a social model approach that includes the perspective that every person with disabilities has the  right to live and participate in the community on an equal basis with others and is able to make his personal choices.

It’s important that society changes its view to people with disabilities, which is still very care based,  and accepts their human rights on an equal basis with others!

Person Centred Planning is a good way to spread the ideas of a social and human rights based model and to increase self-determination for people with disabilities!

For further detailed information: http://www.circlesnetwork.org.uk/what_is_person_centred_planning.htm

John Evans

I am really pleased that ENIL is launching a specific newsletter for the western region of the ENIL organisation.  ENIL for many years has wanted a more regional approach to its work, but due to lack of funding and resources this has not been possible.  It is very exciting now that we have this structure in place which will hopefully benefit all our organisations in the four different areas of Europe. 

We hope this regional approach will not only strengthen the wider membership of ENIL but will also contribute towards a more joined-up thinking of the different Independent Living organisations in the western region.  This way we can also share our experiences and debate the issues which affect us.  I believe that this sharing of experience now is more important than ever in the current difficult economic times we are living in.  Many of our countries are already experiencing cutbacks in services, and we need to challenge this.  I think it is vital that we share strategies with each other on how we deal with and challenge these potential cutbacks.

 It took us many, many years in lots of different countries to establish independent living, direct payments and personal budget schemes, and we do not want to lose this unique way of life for disabled people.  It has been one of the most innovative developments in what is called social care policy over the last 30 years.  I remember well both the excitement and the difficulty of establishing Independent Living in the UK 30 years ago.  We knew we had a vision, even if it was hard to persuade the different authorities, whether it was either National, or Local Government.  In the end we certainly proved our critics wrong, when Independent Living became established and clearly showed a vastly improved quality of life and general satisfaction of disabled people.  We cannot forget these significant advances now when budgets are being tightened, and cuts in services are being made.     

Despite these difficult economic times we also have a number of key levers we can use to support our position.  We have the new UN convention for the protection of our rights, better EU non discrimination legislation, and a variety of good national legislation and policies in a number of our different countries. We need to use this kind of legislation in order to protect our rights to independent living, when such rights are being threatened in the economic down-turn. 

It would be nice to think that the banking sector could help us out, as they are the ones who got us into this mess!  Disabled people should not pay the price for this economic crisis.  I believe that the principles of Independent Living and our involvement in participating directly in policy and decision making can help us survive this crisis and prosper.  Our ideas now are even being considered and used in other sectors of society, simply because of the sheer sense Independent Living and the empowerment of the individual makes.  We must not lose the grasp of both the principles and spirit of Independent Living.  We can win out in the end regardless, as we believe in what we do and know what we do is right.