Author: Sami Helle
This talk was given by Sami Helle at the EU Parliament in Brussels on 13th November 2013. Sami explains how tendering rules are encouraging an inhuman approach to services for people with intellectual disabilities.
Instead of giving people human rights, control and good options people are being sold-off to the cheapest service provider. Instead of helping people contribute to society people are trapped in poor services and lives without meaning.
Sami's talk is below:
My name is Sami Helle and I come from Helsinki, Finland. I am 40 years old and I have a mild learning disability. I am a musician in a punk band called Pertti Kurikan Nimipäivät and media worker in Radio Valo in Lyhty association.
I am active in many associations and also in politics. I am a member of the Centre Party in Finland and I have been active in many elections, supporting candidates who care for people with disabilities.
I am the founder of a self advocate organisation called ”We for ourselves – Me itse ry”. We founded the organisation in 1999 and we have now 904 members with learning disabilities. We also have 104 support members. We insist that nobody should plan, design or discuss issues or services without us, people with learning disabilities. Our declaration is:
"Nothing about us without us!"
Me and my friends all over Finland are fed up how horribly we are treated in Finland and how the services for people with learning disabilities have been cut short or the quality of services has decreased. We believe it is because the way the service providers are forced to compete to provide services.
Me and my friends all over Finland think that we have not been taken into the process of designing the support that we need for equal quality of living and working. This has led into designing support that we don’t need or we don’t want.
Many times the service we have got used to and which we rely on, have been changed into something totally different. All this without our opinion on the matter.
Even though the services are funded by the taxpayers money, the services we get do not create equality among citizens. Why there is no help from the service which should help us? Why can’t we live our lives to the fullest? Why is that?
I think this is because people in Finland actually do not believe that people with learning disabilities should be equal, active and succesful citizens. The decisions show what people think. We hear a lot that we should demand less, be quiet and happy for what we receive from the society.
Me and my friends and the new generation of people have different dreams. We have new skills and abilities and we are prepared to change the world as we know it, now.
I would like to give back to the society who has supported me a lot in various ways through my life. At the moment I think I am driving the car with the handbrake on. Even though I try to lift it, nothing happens. I am the lucky one, I have a career and I am active. How about the great silent majority of people with learning disabilities? What is their situation?
I am here today to discuss in constructive way about how we can involve and include people with learning disabilities in desicion making and building better life for everybody. The European Union should not create structures, which makes the situation of people with learning disabilities worse. This is not ok! This is not right!
We should move on and be progressive. We should make things better. Now I think that we are returning to the 1950’s and 1960’s. Special schools, special group homes and special institutions for people with learning disabilities. Should I always be special, a label, a person with a learning disability?
We are obliged to surrender to the will of the strong. Big companies, cities and municipalities decide what is best for us. This is about power. Why do I feel a lack of power in my own life?
We need more options. If people have options, they can choose. They can choose if they wish to live together with other people with learning disabilities. It is your own choice. People should also have the choice to live alone or with people they choose to live with. I do not have this choice.
People should have the opportunity to develop and design services together with the service providers and together with their community. If the service is no good, things should change. We need to have the choice and opportunity to work in music, media and other professional fields. We need to have a meaningful life. How about you?
Living, daily activities and work are not the only things where we need support. We need help and support to influence things politically in our communities, in our area and in Europe. Are we prepared to include people with learning disabilities in all areas of life?
Competition with human rights is bad for us. Competition between services leads to less innovation and fewer options. Good new ways of support cannot be researched or developed. Money talks. Cheap is cheerful. Me and my friends in Finland think that we have been left out. We are the left overs of the welfare state.
That is why I chose together with my friends to start a political campaign in Finland which aims at stopping the competition of the services for people with learning disabilities completely. It is called ”No to competing services – Yes to human rights! - Ei kilpailutukselle – Kyllä Ihmisoikeuksille!” We aim to bring the discussion to our communities and to the Finnish parliament and change things for the better.
European Union’s Public procurement directives or the Finnish national legislation should not be able to destroy the lives of the people with learning disabilities. Who benefits? Why are we doing all this?
We would like to have an honest discussion about European values and human rights for all citizens. Are we blind to anything but money? Is money our greatest value? I would like to see a future where people with learning disabilities live together equally and with dignity. I would like to live a meaningful life together with other people.
The publisher is The Centre for Welfare Reform.
No to Competing Services - Yes to Human Rights © Sami Helle 2013.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.