The theme of the ENIL 2017 Freedom Drive Conference is ‘Independent Living: A Voice for All!’. It will take place on 27 September 2017, 14:00h – 17:00h, at Autoworld, Parque de Cinquantenaire 11, Brussels. In this article you will find the conference objectives, agenda and presentations of the speakers.
We want to make sure that when advocating for the right to independent living, no one is left behind. For this reason, we have decided to dedicate this year’s Freedom Drive conference to disabled children and young people.
We know that disabled children and young people are often not listened to by disabled people’s organisations (DPOs) and that they lack a strong voice within the Independent Living Movement. As an organisation with a strong Youth Network, we would like to change that. For this reason, we wish to hear from disabled children and young people themselves about how we can better involve them in our work. At the same time, we want to learn from children’s rights advocates and experts about some of the main barriers faced by disabled children and young people. We will use this conference as a starting point, and will make sure that the voices of disabled children and young people come through strongly in all that ENIL does.
The conference will bring together disabled children and young people, children’s and disability rights experts and advocates, representatives of the European Commission and Members of the European Parliament. It is aimed at all those interested in discussing how the right to independent living relates to disabled children and young people, and what we can do to ensure that disabled children and young people are not forgotten as rights holders under the UN Convention on the Rights of Persons with Disabilities.
Objectives of the conference
- To hear from disabled children why independent living is important to them;
- To discuss how the right to independent living relates to disabled children and young people, and what needs to be done to ensure they have access to it;
- To raise awareness about the importance of listening to disabled children and young people, and to discuss how to better involve them in the work of DPOs and other non-governmental organisations;
- To discuss the role of the EU institutions in promoting the rights of disabled children and young people, and child participation.
13:00h – 14:00h Registration
14:00h – 14:20h Opening session
Commissioner for Employment, Social Affairs, Skills and Labour Mobility Marianne Thyssen
Kapka Panayotova, President, European Network on Independent Living (Bulgaria)
14:20h – 14:35h Keynote speech – Every child has a right to grow up in a family
Maja Lorenz (6 years old), supported by her father Magnus Lorentz, JAG Association (Sweden)
14:40h – 15:40h Panel I: Children’s right to live independently in the community – state of play
Tara Flood, Director, Alliance for Inclusive Education (UK)
Sir Roger Singleton CBE, Consultant, Lumos (UK)
Child self-advocate Julie (15 years old), supported by Nema (Belgium)
Bengt Westerberg, Chair of the Board of the Swedish Institute for Disability Research (Sweden)
15:45h – 16:45h Panel II: Promoting the rights of children with disabilities in Europe – the way forward
Mairead McGuinness, Vice-President of the European Parliament
Julius Opdebeke, C3 Unit – Disability and Inclusion, European Commission
Child self-advocate Wilma Hallgren (8 years old), supported by her mother Anna Hallgren (Sweden)
Michela Costa, Head of Global Advocacy, Hope and Homes for Children/Opening Doors for Children Campaign (Belgium)
16:50h – 17:00h Concluding remarks – Strengthening children’s participation in the Independent Living Movement
Zara Todd, Chair, incoming Executive Director, ENIL (UK)
About the speakers
“My name is Wilma Hallgren and I am turning 8 years old and live in Kungsbacka, Sweden with my parents Anna Hallgren and Axel Stenhammar.
I have a muscular disease, CAP myopathy, which means that my muscles are weaker. I can walk and run around like a non-disabled kid but I still have to use a wheelchair so I don’t run out of energy and strength.
I’m a first grader in the Swedish school system. In my spare time I like to play with my friends and go to amusement parks. I also play volleyball, soccer and cello.
I came in contact with independent living since my mom, who has the same muscular disease, has personal assistance through the cooperative GIL, Gothenburg Independent Living, in Sweden.
For me, independent living means a lot. It means that my family and I can do the same things as other families with or without disabilities.
I do not mind having a disability since my friends do not treat me differently from anyone else and that is very important and makes me happy. And I wish it were like that for all kids in the world.
Together with my mom, I have made presentations on living with a disability, both how it is for me, and for me having a mom with disability.
I’ve been on Swedish television twice. First on Channel 4 where me and my mom were interviewed on having a disability and finding solutions and benefits.
Secondly on the other channel SVT in a kids program representing kids with disability and showing that kids with disability can do the same as any kid.
I believe that all children have the same right to be treated the same and have the right to live a normal life with or without disabilities.”
You can watch a video about Julie when she was 11 here.
Marianne Thyssen is the Commissioner for Employment, Social Affairs, Skills and Labour Mobility (2014 – 2019).
Kapka Panayotova is a highly respected disability activist, researcher, trainer and consultant. Her experience covers all major areas of disability inclusion: accessibility, education, employment, community services and goes around Europe (Balkans, Ukraine, Poland, etc.) and Asia (Armenia, Azerbaijan, Georgia, etc.). She is one of the experienced disability awareness and human rights experts welcomed on national and international level by businesses, NGOs and public authorities applying participatory learning approach and adults teaching methods.
Tara Flood is a disability rights activist and has been the Director at the Alliance for Inclusive Education since April 2006. Tara has been involved with the disability rights movement at a grassroots level, for many years, and she is committed to creating social and political change, that will deliver equality for all disabled people at a local, regional, national, European and international level.
The Alliance for Inclusive Education campaigns for the right of all Disabled pupils and students (including those with SEN) to an included in mainstream education and for the ending of segregation. Tara was involved in the discussions at the United Nations in the development of the UN Convention on the Rights of Persons with Disabilities and is now working to get the Convention fully implemented, particularly Article 24: the Right to Inclusive Education.
Tara works with organisations led by disabled people, allied organisations, children’s rights organisations, statutory agencies and Government departments, both in a personal and professional capacity, and is committed to the voices and experiences of ALL disabled people being at the heart of discussions and decision making about our lives.
Tara is a Disabled person and a special school survivor.
Sir Roger Singleton is a government adviser, a consultant in charity governance and management, a non-executive company director and a trustee of several charities. With a background in education, children’s services, policy and management, he retired as Chief Executive of Barnado’s in 2005. Whilst there he expanded the organisation significantly and led its change from being an association providing residential homes to one principally supporting children and young people within their own families and communities. He has participated in many working parties, study groups and public enquiries. He has been an adviser to the Secretary of State for Children, Schools and Families dealing with the statutory barring of people considered unsuitable to work with children. In 2007 he was appointed Chair of the Independent Safeguarding Authority and in April 2009 he became the Government’s Chief Adviser on the Safety of Children. Sir Roger is currently a consultant for Lumos, he previously held roles as Managing Director and as a trustee for the organisation.
Bengt Westerberg has been the Chair of the Board of the Swedish Institute for Disability Research since 2000. From 1983 until 1995 he was the leader of the Swedish Liberal Party and from 1991 until 1994 the Minister of Social Affairs and Deputy Prime Minister. He is considered to be the “father” of the large disability reform of 1993, which resulted in the act on personal assistance. Bengt is the author of several reports on personal assistance, which have contributed much to the current Swedish debate.
Mairead McGuiness is an Irish politician and a Member of the European Parliament (EPP Group). She is the First Vice-President of the European Parliament.
Zara Todd is the incoming director of the European Network on Independent Living. She has been campaigning around disability rights for over twenty years. Zara has worked for a wide range of civil society and disabled people’s organisations at local, national and international levels. She has previously advised the UK Government on disability policy and strategy, as well as policy implementation. Zara has also been involved in shadow reporting on a number of human rights conventions in the UK, including the Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW), the Convention on the Rights of the Child (UN CRC), and the Convention on the Rights of Persons with Disabilities (CRPD).
Zara is an experienced human rights educator and has delivered trainings on human rights to hundreds of participants across the world. She takes an intersectional approach to her work and has a particular interest in capacity building of disabled children, youth and women. As well as her work with ENIL, Zara is one of the directors of a disabled women’s organisation in the UK, called Sisters of Frida. Zara has been profiled by The Guardian newspaper for her work on inclusion.