The term self-advocacy means speaking up for oneself and one’s interests. It is used as a way to describe civil rights movements and mutual aid networks that are led by people with disabilities. The term originated in the broader civil rights movements of the 1960s and 1970s in the United States (US) as well as in the United Kingdom (UK). It is part of the disability rights movement. Today there are self-advocacy organisations all across the world.
According Petri et al. (2021) (1), autistic people and people with intellectual disabilities have been actively involved in disability advocacy. Yet, it is still often parents and professional-led organisations speaking on their behalf while previous studies have found that autistic self-advocates and those with intellectual disabilities have been systematically marginalised in the disability movement. Petri et al. (2021) appraises how economic factors influence self-advocates’ position within the disability movement, based on qualitative analysis of data collected in two countries, the UK and Hungary. Findings include that lack of resources, poverty and unpaid positions at organisations strongly hinder self-advocates’ participation in advocacy/disability rights organisations speaking for them. They also suggest that practices of disability organisations may contribute to maintaining these barriers.
Examples of (autism) self-advocacy associations (relevant selection, non-exhaustive)
Autism-Europe (AE) is an international association representing 7 million autistic people and their families with 90 member organisations in 40 countries whose main objective is to advance the rights of autistic people and to help them improve their quality of life. Next to families, self-advocates play a central role in this organisation to ensure that the views and interests of autistic people are adequately reflected in their work. More information here.
European Council for Autistic People (EUCAP) is an umbrella organisation for autistic-led national and regional organisations in Europe aiming to improve the welfare of autistic people in Europe through participation in public discourse, by networking and engaging with decision-making bodies, and by supporting co-operation between autistic-led groups across borders. More information here.
Comité para la Promoción y Apoyo de la Mujer Autista (CEPAMA) was created to work specifically in favour of autistic women and girls, to promote their visibility and defend their rights, considering that they suffer multiple discrimination – based on gender and disability – when trying to access full social inclusion. More information here (in Spanish).
Spectre autistique, troubles envahissants du développement, international (SAtedI) is the first predominately French-speaking international self-advocacy association of autistic people. More information here (in French).
Autscape is a conference by and for autistic people. Non-autistic people are also welcome, but the environment and content of the event are centred around autistic people’s needs, interests and sensitivities. It lasts three days in which there are workshops, leisure activities, social opportunities, and more. More information here.
European Platform of Self-Advocates (EPSA) is part of Inclusion Europe (IE), the European voice of 20 million people with intellectual disabilities and their families. EPSA brings together people with intellectual disabilities from different countries in Europe to speak up for themselves to tell people about the rights, abilities and needs of persons with intellectual disabilities. More information here.
The European Network on Independent Living (ENIL) is a user-led network of disabled people, with members throughout Europe. ENIL is a forum for all disabled people, Independent Living organizations and their non-disabled allies on the issues of Independent Living. ENIL represents the disability movement for human rights and social inclusion based on solidarity, peer support, deinstitutionalization, democracy, self-representation, cross disability and self-determination. More information here.