People’s Page – Deirdre Spain

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My is Deirdre Spain. I am 29 years old and I live in Dublin with my parents. I am a self-advocate, in May I attended the Inclusion Europe Conference in Prague entitled ‘Towards Living in the Community’ along with other self-advocates and my friends from namhi. The delegates were from all over Europe, New Zealand, USA and Canada.

We left Dublin at 12 o’clock on Wednesday morning and arrived in Prague at our hotel that evening. The conference opened the next morning with a very long opening session—even though it was long, it was very interesting. The President of Inclusion Europe welcomed us all to Prague and to the conference. She told us that the vision of people with disabilities has changed: we now speak about citizenship, equality and rights.

The next speaker was a parent from Germany. She told us about a project that her daughter attends, where people with intellectual disabilities can live a better life in community-based services. She told us that people living in institutions have very little contact with their families and are often excluded from society.

This was followed by a talk on how the EU is fighting against social exclusion and discrimination. People with disabilities should have the right to be independent, have the right to work, and the right to take part in social life. The speaker also told us the only way forward is to listen to people with disability themselves, to find out what they want.

We heard from the President of Inclusion International that the United Nations will very soon write a very important paper called ‘Convention on the Rights of the Person with Disability’. The UN is consulting with Inclusion International.

Ulla Topi a self-advocate from Sweden, asked us are we happy with how we (self-advocates) are living at the moment? She asked us to think of our dream house. She suggested a house with lots of space, with your own name on the door/your own key/and to be able to choose the persons you live with. She asked us to do this test and my answers were nearly all ‘no’ to the questions, which goes to show I have a long way to go to get what I want in life and to get my dream home. Indeed, the results for me showed that I don’t have such choices, I would have to make do with what I am offered.

In the afternoon we head about what is happening in Sweden from Karl Grunewald. He told us that in Sweden people with intellectual disabilities live included in society. They live in group homes. All the institutions are closed. It is much better for all the people. He told us that at first parents were not happy that the institutions were closed. They were nervous because they thought their family members would be lonely. They were afraid of traffic on the streets. But it was found that life was much better for people with intellectual disabilities. They have their own flats, kitchen and bedroom, and at last they have to live like ordinary citizens. If only this happened in Ireland!

Camilla Parker from England told us about rights. She says that human rights are for everyone. We should have a right to life, work, marriage, and a right to education. She told us of countries where in many institutions human rights are not respected. They do not have enough food or clothes, live in dirty rooms and have nothing to do. This will have to change.

The most enjoyable workshop was the Dance Activity. The instructor teaches people with intellectual disabilities how to express themselves through dance. We danced with great fun and laughter. We were taught many different steps, including Spanish and ballet dancing. We then listened to a story and had to make up our own dance from the story and from the photos on the wall around the room.

My mother Jean came with me to this dance session. She said that if she got down on the floor like the rest of us she wouldn’t be able to get back up again and we all laughed! But she stayed on and enjoyed looking and laughing at us.

All delegates attended a reception in the Senate of the Czech Republic. It was a beautiful building. We had a lovely evening of music and lots of food.

On Friday I attended the General Meeting of the European Platform of Self-Advocates. We heard how self-advocates are treated in different countries, which was very interesting. Some countries are very good and other countries are really terrible. We broke into groups were we talked about how we can change the way people treat us. We discussed the way we can make this happen by speaking out. With my friends I brought up the problem of bullying and told of the book which was launched by my centre.  We were also encouraged to join The European Platform of Self-Advocates where we could continue to fight for our rights. We promised to ask our self-advocacy group if we could join the platform when we had our next meeting.

It was hard to follow the workshop, as we had to listen in on our headphones.

Once again I went to the dancing and again I had great fun.

That evening we had the Congress dinner, which was held on Friday evening, after which we danced the night away. It was great. Next day it was time to say goodbye to everyone. I was every sad as I had made many friends at the conference, even though it was very hard to understand them because of the different languages.

The President of Inclusion Europe invited us to Brussels for the next conference.

We got to see the city of Prague that afternoon. We took a tour bus. It is a lovely city with lovely buildings and statues. The weather was lovely so we went to Prague Castle and sat down and had a rest in the sun. I enjoyed being with my friends in namhi. We had a busy time, but I know I learned a lot about what is going on in other countries for people with intellectual disabilities.

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