It was close to +35 degrees on the 25th of June and there was no shade to take shelter in front of the Palais de Justice law courts of the busy city of Lyon. At noon, as the first protesters unfolded their banners, the barristers, judges, clerks and litigants had just started to leave the Palace for their lunch break. Some were passing, turning their heads away so as not to see the banners, some were approaching and inquiring what was going on. There was a police officer assigned to screening at the entrance of the Palace, wanting to understand, and willing – symbolically – to give his first name as a token of his status as a private citizen rather than a police officer on duty. There was a clerk of the guardianship (protection) Court explaining that the mountain of files to be dealt with never gave a glimpse of the “persons” concerned themselves, who rarely attended the Court. There was a young autistic man on the municipal electoral list, in a position of victory in Lyon.
At the high point of the action, there were around 30 participants: from all spheres, young and elderly, many of them being persons with disabilities.
The text of the main banner – “Forced institutionalization of autistic persons: justice accomplice” – highlights that justice is questionable in the country where, so far, having a segregated setting for persons with disabilities is seen as a major social achievement and even as a right you need to fight for. France is more and more isolated in this viewpoint, being one of only four EU countries where the number of segregated facilities has increased, instead of diminishing, over the last decade. It is also, perhaps, one of the only countries which does not recognise institutions as places of liberty deprivation, irrespective of the number of UN official instruments that include residential settings in the list of places of detention and clear jurisprudence of the European Court on this point.
The involuntary detention and forced treatment of persons with autism and psychosocial disabilities flourishes in France: the Controller of places of liberty deprivation reported several instances where fundamental rights and human dignity were violated in closed psychiatric wards – where the intervention of justice is but symbolic.
The residential settings for disabled persons in France are a sort of continuum of psychiatric wards: residents are officially free to come and go, but the persons living in institutions in fact undergo total control of their lives, movements and activities (the latter being often reduced to watching TV). With one of the most outdated legal frameworks in the EU (and probably in the world) of a guardianship system excluding any allusion to supported decision making, France is one of the leaders in the ratio of deprivation of legal capacity and deprivation of liberty of persons with disabilities. According to the latest official statistics, there are around half a million disabled persons and almost a million elderly persons deprived of their liberty in residential settings in France.
France has a very strong tendency to exercise full control over the life of the ‘vulnerable’: the legacy of paternalism still largely underpins French society, opening the door to the use of those lives as a source of profit for pharmaceutical, institutional and professional guardianship lobbies. Today, it is an entire part of the French economy, fuelled by states subsidies and resulting in destroying the lives of ‘protected’ persons. The mechanism is simple – in the absence of an alternative (supported independent living), families are pushed towards placing their disabled and elderly dependent members into residential settings. While some do the heroic effort of keeping them at home, those persons who are placed under guardianship of ‘professional’ guardians (in around half of the cases) will not escape the detention. The associations running care homes, like UNAPEI, OVE and others, receive state subsidies and hire non-trained, poorly paid staff with a high turnover, to make a profit. The situation of detention must be ‘accepted’; virtually all residents are fed high doses of powerful behaviour-controlling drugs, given without consent (or with that of a guardian), to the greatest joy of the big pharmaceutical companies that receive money from the French health security system, famed to be ‘one of the best in the world’. The average citizens, who, via their taxes, fund those companies, are aware about the high amounts spent on disabilities, yet they are convinced that the State ‘cares for the most vulnerable’. And as there are no independent checks inside residential settings, what is really going on there is barely known to wider society. And even with sporadically appearing news about ill-treatment and ‘accidental’ deaths, there is little or no willingness for change. The situation confirms what was written by David Kennedy in ‘Dark side of virtue’: the articulation of rights as welfare is very likely to lead to isolation and passivity.
French justice is not only helpless in this situation: it is largely accomplice. The guardianship court judges (juges des tutelles) usually reject all attempts to mention the UN CRPD and stick to outdated domestic guardianship law. They rarely have specific training and often ignore what the CRPD is about, as noticed by the UN Special Reporter during her visit to France three years ago.
It is impossible to initiate legal proceedings for the unlawful detention in a segregated setting in France, the issue being reduced to the discussion of the ‘right to visit’ (the person who is living in the segregated setting), which a relative may be granted – or not. Though there is no such provision in French law that such a ‘right’ is given to the relatives who agree with the detention and refused to those who don’t. Tom (name modified) didn’t see his mother for more than three years. Another mother of an autistic young adult who attended the protest event said she hadn’t seen her son for five years. There are many other similar cases, which don’t even receive any visibility.
This is why what happened in Lyon is so important. The disabled persons’ organisations which co-organised the protest – France disability, CLE Autistes, SOS Psychophobie and Hopsyweb – represent a new wave in the fight for disability rights, no longer led (exclusively) by families, but by persons with disabilities themselves. The discourse about ‘special care’ is starting to be contested and the rights asserted in the CRPD claimed, despite the dense smoke of official communication which tends to minimise the significance and twist the content of that treaty. Because none of the big parental associations, no French scholars, nor independent HR national bodies (such as Defenseur des Droits) so far contested ‘institutionalization’ as a system – the nascent civil society awareness of this urgent issue should not be overestimated.
The 25th June 2020 will, probably, one day be remembered as the starting point of the collective protest against institutionalization and the forced treatment of people with disabilities in France. Let’s hope!
Written by Maryna Py