A manifesto for cerebral palsy

Abstract

Citizens of at least 97 countries, home to half the global population, have the opportunity to vote in elections in 2024, including in the world's largest exercises in democratic participation: the general election in India and the elections to the European Parliament.

Some ideas transcend time, echoing across centuries and continents. Among them is John Locke's theory of natural rights, enshrined in the US Declaration of Independence. These enduring concepts have shaped societies, inspired revolutions, and championed the inherent dignity of every individual. There is growing recognition that describing these rights as universal means making a special effort to ensure that those who have been excluded, such as citizens with a disability, including cerebral palsy (CP), can enjoy them fully and freely.

This is why the CP European Union Association (CP-ECA; www.cp-eca.eu) decided that it was time for a Manifesto for Cerebral Palsy in advance of the European elections in 2024 (https://cp-eca.eu/about-cp-eca/manifesto-for-cerebral-palsy/). The Manifesto is based on scientific and legal foundations, but it was our own lived experience of CP that inspired us most when drafting the text. It aims both to demonstrate to policymakers the impact of their actions on citizens with CP and to explain to citizens with CP how European Union (EU) legislation, standard-setting, and funding can make a difference to their lives; to both influence policy and empower the CP community at the same time.

The United Nations Convention on the Rights of Persons with Disabilities states that individuals with disabilities deserve equal opportunities, inherent dignity, freedom of choice, independence of others, and effective democratic participation in society (https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities). The EU supports the aims of the Convention through its Strategy for the Rights of Persons with Disabilities 2021–2030, which strives to reduce discrimination and emphasizes the importance of accessibility as the foundation of autonomy and equality (https://ec.europa.eu/social/main.jsp?catId=738&langId=en&pubId=8376). There has been significant progress in recent years, such as the European Accessibility Act, the Web Accessibility Directive, and the European Disability Card, but more still needs to be done.

In preparing the Manifesto, we selected crucial areas we felt were the most important for the integrity, dignity, freedom, and independence of individuals with CP. We expressed our expectations and needs in the areas of healthcare and general well-being, education, employment, freedom of movement, democratic participation, scientific research, assistive technology and communication, living conditions of our choice, and humanitarian aid. We also contributed to the Manifesto prepared by the wider European Disability Forum, which focuses on the protection, social and political participation, and inclusion of individuals with disabilities in Europe and beyond (https://www.edf-feph.org/publications/eppd-manifesto-2023/).

The Manifesto for Cerebral Palsy was then presented at online meetings, in Brussels to Members of the European Parliament, and also to national political representatives. We shared its content with relevant national and international associations. Thanks to generous volunteers, the Manifesto was translated into Croatian, Danish, French, German, Greek, Italian, Portuguese, Romanian, Slovenian, and Turkish, making it more accessible.

While the Manifesto was prepared in a European context, many of the issues it addresses are relevant to the CP community around the globe – as is the principle that the CP community needs to connect up different issues in order to advocate for the rights of citizens with CP. This can be seen in the Global Report on Children with Developmental Disabilities by UNICEF and the World Health Organization, which proposes 10 action areas requiring cooperation between various sectors, networks, and stakeholders (https://www.who.int/publications/i/item/9789240080539).

We believe the Manifesto for Cerebral Palsy represents a step towards greater awareness of what life with CP means and sets a solid foundation for future development and inclusion at all levels of society.