Representation of Persons with Muscular Dystrophy at European level

Erzsébet Földesi Vice President of EDF|

European Disability Forum (EDF)

- An independent NGO

- The umbrella organisation of persons with disabilities in Europe

- The front runners for disability rights

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

EDF- Who are we?

• human rights• equal opportunities• non-discrimination

Mission

• a society that includes people with disabilities is a better society for everyone

Vision

• guarantee fundamental rights • promote active participation

of persons with disabilities

Values

We make our voice heard towards the EU Institutions

We consult NGOs, industry, consumers & social partners

We provide real expertise to decision-makers

How does EDF work ?

15.000 lobbyists

2.600 interest groups

EU bodies

How does EDF work ?

Who deals with what?EU Internal market, transport, product safetyMember States Social policies, health, education

Who does what?EU EDF works with the EU institutions directlyMember States EDF members works with national governments

Our achievements

Disability Strategy 2010-2020

Structural FundsStructural Funds

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

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 obstaclesthat 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

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!

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

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.

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

•

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.

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

Advocacy on European levelMD in SL

MD in EU MS

MD in CR

MD in HU

MD in EU MS

MD in EU MS

MD in EU Ms

EDF

MD in EU MS

EMDA

Advocacy on European levelMD in SL

MD in EU MS

MD in CR

MD in HU

MD in EU MS

MD in EU MS

MD in EU Ms

EDF

National Council of SL

MD in EU MS

EMDA

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

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

EDF e-mail groups

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

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

szollosi_foldesi@yahoo.com

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