CLE Autistes is a major autistic-led group of French autistic people. They advocate for neurodiversity, acceptance, disability rights and independent living for autistic people.
CLE Autistes notes that the French Disability Model is based on institutions for disabled people. From schooling to employment, disabled people are therefore rarely directed towards quality community services, that would allow them to stay at a home, to retain their independence and to participate fully as a citizen. Access to the public sphere is often one of the key challenges to overcome.
Many people with mental, cognitive or psychiatric disabilities are therefore placed in specialised institutions without their consent, thanks to guardianship. Most of these institutions are managed by non-profit management associations created by parents of disabled people. Overall, French society seems to consider institutionalisation as an obvious and satisfactory response for disabled people, in terms of inclusion. Moreover, France has ratified the UN Convention on the Rights of Persons with Disabilities, but many articles have not yet been transposed into French law.
At the beginning of the year, when the French Government took measures in response to the Covid-19 epidemic, recommendations were made by way of a press release to specialised institutions for disabled people and to nursing homes for the elderly. As a result, in many of these places, the usual activities, outings and family visits were eliminated. Many residents had to live in self-sufficiency for three months, with staff who no longer even took them out on the terrace or locked them in their rooms.
CLE Autistes initially denounced this situation by recalling the fundamental rights and freedoms in times of crisis. Indeed, it is unjustifiable to lock up disabled people, disproportionate to the measures taken for the general population. CLE Autistes therefore reacted by writing a petition asking for the population of these institutions to be reduced (and therefore the workload of staff overwhelmed in normal times) by letting out consenting persons, whose families volunteered to host them (as happened with prisons).
CLE Autistes also asked for alternative means of communication with their families/friends for those who did not meet these criteria, as well as derogatory conditions for trips out. CLE Autistes was concerned about access to care for disabled people contaminated by Covid-19, living in specialized institutions. Numerous testimonies and investigations in the press have revealed negligence at this level – even a refusal to resuscitate disabled (and/or elderly) people in hospital, following regional recommendations. The emergency intervention services no longer travelled for these population categories. Together with other groups of disabled people (the CLHEE, Handi-Social, and the Dévalideuses), CLE Autistes also denounced this situation, and warned about the lack of personal assistance (increased during this critical period) for people not living in specialised institutions.
Together with France Disability and Validity Foundation, CLE Autistes headed a legal case challenging the confinement recommendations before the French Conseil d’Etat (State Council), as the Conseil d’Etat is the supreme legal body for challenging government decisions. The recognition of specialised institutions as places of liberty deprivation, pursuant to EU legislation on the subject, was therefore brought before the Conseil d’Etat. After a week, the judges rejected the request of CLE Autistes, on the basis that French law confers management of the rights of disabled people to specialised institutions and that the State could therefore only make recommendations. This is an outdated form of disability politics, and a flagrant break with the rest of the French population in terms of the application of the law. This therefore implies that human rights would depend on the policy of an institution’s managers, which constitutes an unbearable breach of equality.
The eugenic nature of the triage, which has condemned hundreds of people to death, was denounced. Moreover, the figures remain unclear because there are grey areas in the counting of deaths in specialised institutions.
The number of deaths in institutions has continued to rise to over 50% of all deaths from Covid-19. This is one of the highest rates among the rich countries studied. The health crisis has reminded us (in France and elsewhere) that institutionalisation is an epidemiological trap threatening the right to life and access to care for disabled people living in specialised institutions.
This organised deprivation of freedom has literally ended in the deprivation of life.
Pending the results of the Covid-19 Enquiry Commission, CLE Autistes is continuing its legal efforts with a view to potential criminal proceedings.
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