The Invisible Half-Citizens in the Country of the Human Rights Declaration
It is morning in the special residential home ‘Michel Chapuis’ near Lyon, brand new and run by the association OVE; it was opened only a year ago (9 years after France ratified the UN CRPD). Tom (modified name) is a young autistic man who was placed in this institution without being asked what he actually wanted, on the sole decision of his guardian who was appointed by a judge and had met him only a few times. Tom wants to take his clothes out of the laundry – he hasn’t got them in his room. However, the ‘educator’ wants to persuade him to put them back in the dryer as they are still wet. Tom resists and defends this small choice he has left: he didn’t choose this place; he can’t choose to leave it when he wants or with whom he wants and he certainly didn’t choose any of the sedative drugs he is given every day, which make him sleepy during the day and awake during the night. These sedatives are destroying his health slowly but surely. He didn’t choose to be without any activity all day long. Tom used to be active, cycling and playing the piano when he lived with his family, but he is not allowed to stay with his family anymore. His choice is now reduced to these clothes – the kind of choice that is taken for granted by others – and it makes him so angry. Eventually, as the staff don’t give in, Tom’s behaviour grows disruptive. All of the members of the staff are against him and he is forced to give back the clothes and is isolated in the ‘respite room’ without any explanation. He hits the door with his head, in utter distress. He is released from isolation as he has a visit from someone outside the institution. Nobody can tell how often he and other residents are subject to such humiliating punishment. Isolation is forbidden outside a medical context in France and no one will find this ‘option’ on the brochure for ‘users’ as new and pretty as the building.
However, in France, the practice of isolation and restraint – both physical and chemical – is widespread in residential settings where persons with disabilities of all ages spend their lives, hidden from society. Nobody can tell their exact number – the last survey dates back to 2010. UN Special Reporter Catalina Devandas stated in her report, after visiting France in 2017, how surprised she was by the number of adults and children living in special institutions. There are certainly hundreds of thousands of them. The only precise statistics are those of the French living in institutions in Belgium: France is the only country in the world forcing the exodus of citizens because of their health and cognitive condition. There are 7 892 of them – including 1 435 children – placed in private residential homes and financed by the French welfare system. They are very welcome in the French-speaking Wallonia region in Belgium, which is affected by unemployment, as they create jobs. In 2011, an inter-governmental agreement was signed to facilitate cross-border collaboration and monitoring of those ‘homes’, which so far had escaped all forms of checks.
While such exodus to Belgium meets with a lot of criticism, the consensus about the legitimacy and need for institutions for disabled persons is quasi-unanimous in France. Indeed, the claim is rather about opening more ‘structures’ to bring the people who were sent abroad back to France. When – very rarely – the topic of residential homes for persons with disabilities is discussed in the French media, they are presented as ‘innovative platforms’. This avoids presenting an idea that institutionalisation could be bad. The institutions create jobs for non-disabled people and keep the disabled settled. They are almost always run by big associations (charitable organisations) which, according to the Disability Acts of 1975 and 2005, have a large majority of places in the Comité national consultatif des personnes handicapées (the influential national advisory committee for persons with disabilities). Such charitable associations – initially, and still often today, run by the disabled persons’ parents – are justified under the principle of ‘positive discrimination’ that was developed in France after the Second World War. The idea that ‘vulnerable persons’ must be ‘protected’ somewhere is widely accepted, as is the assumed truth that it is rather society which protects itself from those whose difference demands much more personal involvement than the average French citizen is ready to give. In the media (also social media) the terms ‘inclusion’ and ‘institutions’ merge and are understood as being inter-dependent. It is not unusual to see the parents of an adult with an intellectual disability claim a place in the ‘structure’, referring to inclusion and the CRPD.
The French Human Rights Defender (Défenseur des Droits), responsible for the implementation of the CRPD, avoids issuing an opinion on institutionalising persons with intellectual disabilities and autism; instead he prefers to talk about ‘places to live’, rather than ‘places of deprivation of liberty’. However, a recent report by the Centre for Disability Law and Policies (CDLP) in Galway presents France as a country with widespread arbitrary deprivation of liberty based on disability.
This situation seems highly unlikely to change, even with the disclosure of ill-treatment – seclusion and restraint. Whilst such treatment is forbidden by the French legal framework outside a hospital setting, it is still widely accepted by French society as a fatality in residential contexts. Claims of ill-treatment are extremely rare and not one criminal conviction has been recorded so far for that reason.
As for Tom, access to justice is denied as he is represented by his guardian in all aspects of life and before the courts according to Article 459 of the French Civil Code. Only his guardian, an organization called GRIM (its real name) can lodge a claim; however, it doesn’t do so. Tom is viewed by GRIM as the income the State pays for him – the annual cost of the ‘guardianship’ system in France amounted to 700 million Euros in 2015, according to the Court of Auditors. These are only the fees for substitute decision-making; those spent on institutions are unknown but are certainly many times the aforementioned. All this money would probably be enough to allow everyone to live independently, but it is diverted. Moreover, any official communication is organised in such a way that it creates panic about an upcoming ‘deinstitutionalisation’, which is completely unfounded, thus strengthening the case for ‘special structures’. Many would even say Tom ‘is lucky’ – at least, he wasn’t sent to Belgium.
Meanwhile, Tom is forbidden from leaving the place he never chose, so he protests as far as he can. When Maison d’Accueil Spécialisé had exhausted all of its ‘punishment means’, Tom was recently sent to Vinatier psychiatric hospital, to remove all his assertions of liberty once and for all. That is all that the country of liberté can offer him.