The Invisible Half-Citizens in the Country of the Human Rights Declaration

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.

Maryna Py

4 Comments

Zig Blanquer

February 12, 2020, 12:48 pm

Merci pour cet excellent article.
La rage au cœur envers “Tom”, et tant d’autres de nous.

Zig Blanquer

Valentina Dragicevic

March 17, 2020, 11:26 pm

Dear Mrs. Py,
Thank you very much for the article on this vital and often overlooked topic about the reality of de-institutionalisation. I am a professional in the field of inclusion, and during my studies I had a short-term work experience in the newly opened residential housing for people with disabilities. So far, in my career I have worked closely only with children with disabilities, for many of which I knew the future held some form of institution. I believe that in most scenarios, placing young people with disabilities in the housing arrangement is often just another form of institutionalisation. As you have mentioned in the case of a young man „Tom “, although on the surface it seemed that he was sent to a „better place”, where he could be more included in the society and make his own choices, the truth was far from that. People with disabilities living in residential settings are still limited in their choices, as other people still make them on their behalf instead. In my experience, six people living in residential housing in my home country Croatia, had some benefits form this arrangement, such as fewer people to share the space with, occasionally choosing what they would like to eat and being given more opportunities to learn how to perform every day activities by themselves. However, there was a tight schedule they had to follow, including breakfast, hygiene, lunch, rest, dinner, TV time, sleep etc. Every day was typically the same, and all the little personal selections that make our everyday experience and bring us pleasure, such as, sleeping in late, or watching a movie you like, are taken away. I believe that de-institutionalisation is a step forward towards a more inclusive society. However, there is still much more to do, and we can use a variety of other methods to improve the arrangements that are present in many countries. Examples may include better communication with people with disabilities, including their opinions and wishes in our decisions, including them actively in the society, and securing better protection of their basic human rights.
Reading your article about institutionalisation and the process of de-institutionalisation in France left me stunned. It was shocking to read that those people are subjected to humiliation and punishment, stripped of their identities, while never given a chance for their voices to be heard. Furthermore, we will never truly know the numbers and truths behind many of those appalling acts. Nine years after signing the CRPD, it seems little overdue to present housing arrangements as an innovation, instead of as what it truly is – an overdue correction of a brutal, closed and unfair system. Too many people with disabilities meet a similar fate to Tom’s. If they cannot conform to the rules of the residential settings, they are eventually removed to a psychiatric institution where they spend the rest of their days under heavy medications. It is truly heart breaking. What gives me hope for the future are authors such as you, investigating, raising awareness, and above all caring for those who cannot raise their voices. Thank you for that.
Kind regards,
Valentina Dragičević

Alliance Autiste

June 26, 2020, 12:03 am

Thank you for this very good and informative article, which summarizes well the situation.

One might add that this young man does not even need any kind of “special housing” or whatever : when we met him (when he was still free, several years ago), he was living peacefully within his family, until the French so-called “Justice” decided to persecute the family who dared to resist that system.

He is unfortunately an example, but there are thousands of others. They are used to feed the “medico-social” industry, which needs to have people in their “institutions” in order to make their exploitation business.

When you know the prices (about 300 € per day in a “center”, and up to 1000 € per day in a psychiatric hospital), then you understand easily that frenzy to keep the “golden goose” by all means.
These amounts are insulting, but they are paid automatically by the “social welfare” which heavily rackets the taxpayer. Al Capone was ridiculous in comparison.

You may read our contribution to the “List of Issues” of the CRPD last year (in English) : https://allianceautiste.org/wp/2019/07/questions-associations-autistes-etat-francais-convention-droits-personnes-handicapees-examen-france-2020/

And here the section “Desinstitutionnalisation” (N°11) gives some details (in French) about the various tricks used by the French state to circumvent a genuine desinstitutionnalisation : https://allianceautiste.org/wp/2020/02/disand-questionnements-explications-et-suggestions/

This is disgusting.
We are helpless.

Alliance Autiste

June 27, 2020, 1:56 am

Thank you for this very good and informative article, which summarizes well the situation.

One might add that this young man does not even need any kind of “special housing” or whatever : when we met him (when he was still free, several years ago), he was living peacefully within his family, until the French so-called “Justice” decided to persecute the family who dared to resist that system.

He is unfortunately an example, but there are thousands of others. They are used to feed the “medico-social” industry, which needs to have people in their “institutions” in order to make their exploitation business.

When you know the prices (about 300 € per day in a “center”, and up to 1000 € per day in a psychiatric hospital), then you understand easily that frenzy to keep the “golden goose” by all means.
These amounts are insulting, but they are paid automatically by the “social welfare” which heavily rackets the taxpayer. Al Capone was ridiculous in comparison.

You may read our contribution to the “List of Issues” of the CRPD last year (in English) : https://allianceautiste.org/wp/2019/07/questions-associations-autistes-etat-francais-convention-droits-personnes-handicapees-examen-france-2020/

And here the section “Desinstitutionnalisation” (N°11) gives some details (in French) about the various tricks used by the French state to circumvent a genuine desinstitutionnalisation : https://allianceautiste.org/wp/2020/02/disand-questionnements-explications-et-suggestions/

This is disgusting.
We are helpless.

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