1. Erzsébet Földesi Representation of Persons with
Muscular Dystrophy at European level
Erzsébet Földesi
Vice President of EDF|

2. European Disability Forum (EDF)
An independent NGO
The umbrella organisation of persons with disabilities in Europe
The front runners for disability rights
In 2011 the European disability movement focuses on Freedom of movement.
It is important because EU treaties guarantee basic freedoms to all citizens: free movement of people, goods, services and capital.
This means that anyone can move, work and live in every country of the EU.

3. Membership of the EDF National Councils from 27 EU MS +
Iceland and Norway
NGOs with members in a majority of EU countries.
National Councils in EU countries not part of the EU
Organizations
of all kinds

4. EDF- Who are we? Vision Values Mission
a society that includes people with
disabilities is a better society for
everyone
In 2011 the European disability movement focuses on Freedom of movement.
It is important because EU treaties guarantee basic freedoms to all citizens: free movement of people, goods, services and capital.
This means that anyone can move, work and live in every country of the EU.
Values
Mission
human rights
equal opportunities
non-discrimination
guarantee fundamental rights
promote active participation of
persons with disabilities

5. How does EDF work ?
lobbyists
2.600 interest groups
EU bodies
We make our voice heard towards the EU Institutions
We consult NGOs, industry, consumers & social partners
We provide real expertise to decision-makers
In 2011 the European disability movement focuses on Freedom of movement.
It is important because EU treaties guarantee basic freedoms to all citizens: free movement of people, goods, services and capital.
This means that anyone can move, work and live in every country of the EU.

6. How does EDF work ? Who deals with what?
EU Internal market, transport, product safety
Member States Social policies, health, education
Who does what?
EU EDF works with the EU institutions directly
Member States EDF members works with national governments
In 2011 the European disability movement focuses on Freedom of movement.
It is important because EU treaties guarantee basic freedoms to all citizens: free movement of people, goods, services and capital.
This means that anyone can move, work and live in every country of the EU.

7. Our achievements Structural Funds Disability Strategy 2010-2020
In 2011 the European disability movement focuses on Freedom of movement.
It is important because EU treaties guarantee basic freedoms to all citizens: free movement of people, goods, services and capital.
This means that anyone can move, work and live in every country of the EU.
Structural Funds
Structural Funds

8. In 2011-2012 EDF focuses on freedom of movement
It is an objective of the EU that is protected by the treaties. It guarantees:
Free movement of persons
Free movement of goods
Free movement of services
In 2011 the European disability movement focuses on Freedom of movement.
It is important because EU treaties guarantee basic freedoms to all citizens: free movement of people, goods, services and capital.
Free movement of persons = any citizen of a Member State has the right to move, work and live in another Member State
Free movement of goods = Goods produced in one country can be sold in another, under certain conditions .
EDF wants accessibility to be a criteria for importing and exporting goods
Free movement of services= any citizen has the right to provide and receive services in another Member State

9. Medical vs social model of Disability
Medical Model of Disability
- a person with a disability is "broken" or "sick" and requires curing or healing.
to solve the problem medical intervention is needed.
health professionals are responsible
individuals, societies, and governments may avoid the responsibility of addressing the human rights obstacles that exist in the social and physical environment
the "problem" is in the person with the disability.
Social Model of Disability
Focuses on removing the social and physical in the environment that hinder people with disabilities to exercise their human rights.
It includes e.g.
promoting change in the attitudes and perceptions, - change in the built environment, provision of information in accessible formats, - ensure that laws and policies support the exercise of full participation and non-discrimination.
Responsibility is on the governments
The problem is in the environment

10. The Human Rights Model of Disability
- persons with disabilities are rights holders and subjects of human rights law on an equal basis with all people
- a person's disability is recognized and respected as diversity,
- disability-specific prejudices, attitudes and other barriers are defined as obstacles to the enjoyment of human rights
- places the responsibility on society and governments for ensuring that the political, legal, social and physical environments support the human rights and full inclusion and participation of people with disabilities.
THAT IS THE MODEL WHAT THE EUROPEAN DISABILITY FORUM SUPPORTS!

11. EDF is against the narrow definition of disability
The EU disability movement is inclusive of all people that due to barriers in society face discrimination to access education, services, employment, etc
The European disability movement represents also people with disabilities that have been traditionally excluded from the disability strategies e.g. people with psycho-social disabilities, people with a chronic illness, rare or invisible diseases

12. UN Convention on the Rights of Persons with Disabilities
Article 1.)
… “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”
This definition of persons with disabilities will help to understand how persons with chronic illness may be part of the disability movement.

13. EDF Policy document on disabled people with a chronic illness
Made with the support of the EDF Chronic Illness Committee
Made by representatives of the movement of people with chronic illnesses, rare and invisible diseases.
People with a chronic illness need support to overcome the medical model that considers just their condition as patients and not as citizens with the same rights that all members in all areas of life and not exclusively in the field of health.
Intends to ensure that organisations of people with a chronic illness fully participate in the promotion of all the legal protection and positive actions that have to be created for people with disabilities in Europe

14. People with chronic illness and disability
Chronic illness is an illness that for the majority of people is irreversible, that for many often is invisible and that requires social support, medical support and flexible systems which should ensure the social inclusion and employment options for those so defined. (Policy paper of EDF)
Chronic illness in itself is not by definition seen as a disability
When the chronic illness provokes an impairment and its interaction with various barriers may hinder the effective an full participation of the person with a chronic illness in society, then we will speak about disability.
It is not relevant if a blind person is blind from birth, from an accident or from a disease like diabetes. On the contrary, the barriers that society causes to the individual are the issue to tackle.

15. Fundamental rights of people with chronic illness
EDF Policy paper on people with chronic illness devotes a chapter on the following:
The right to life
Right to represent their interest
Equalization of opportunities
The barriers faced by persons with chronic illness
Social model for rehabilitation processes

16. Advocacy on European level
MD in SL
MD in CR
MD in HU
MD in
EU MS
EMDA
EDF
MD in
EU MS
MD in
EU MS
MD in
EU MS
MD in
EU Ms

17. Advocacy on European level
MD in SL
MD in CR
National Council of SL
MD in HU
MD in
EU MS
EDF
EMDA
MD in
EU MS
MD in
EU MS
MD in
EU MS
MD in
EU Ms

18. Target Group Committees
Committee on women with disabilities
to mainstream gender in all EDF policies and documents, to raise awareness on the specific situation of women with disabilities and to work towards inclusion of women with disabilities in the society
supports EDF participation in the European Women’s Lobby (EWL).
Committee on youth with disabilities
to mainstream youth in all EDF policies and documents and to raise awareness about the needs of youth with disabilities. EDF signed a Memorandum of understanding with the European Youth Forum

19. EDF task forces Task Force on education
to gather expertise on access to education in view of the implementation of the CRPD and on the content of the EU non-discrimination legislation on the ground of disability
Task Force on health
To prepare contributions to the EU legislative proposal on health services as well as input into the EU health strategy

20. EDF groups
EDF has set up expert groups on the following issues :
- transport
- information and communication technologies
- built environment
- non-discrimination
- social services and community living

21. Conclusions
EDF is to represent the interest of the diverse group of disabled people
UN Convention is an effective tool to have our rights realised
Members of EAMDA have valuable knowledge on the every day experience of people with muscular distrophy
The special needs of EAMDA shall be communicated through EDF’s different organisational structures and be represented by EDF in the lobby work of EDF towards EU institutions

22. For further contact: