Conference of March 7 th 2023 on the general debate on emergency risk humanitarian situations
My name is Capucine Lemaire and I chair the observatory of disability policies, an independent and unsubsidized NGO that I founded in 2021 and which gives itself the missions of monitoring policies, to innovate, coordinate and amplify the independent living conditions of persons with disabilities.
Disability is the first discrimination in the world. This systemic discrimination is largely embedded in our societies that make a difference, perceived as incurable, between the ordinary and the specific. The definition of disability is central and special protection under international law should be disposed rather as being in the field of solidarity and interdependence than as a vision always split in two, which, apart from humanitarian emergency, war or natural phenomena, already systematically harms disabled people and their families.
A nuisance that comes from governments and intermediary bodies impregnated by a system of segregation, constituting a benevolence. The risk situations, mentioned by the Committee on the Rights of Persons with Disabilities which invites us to visualize today an accentuation of an already unsustainable situation, already exist in a world in permanent and composite crisis: security, climate, economic and health.
In the event of war or natural disaster, it would be more coherent to allow a system of solidarity, already effective, around the independent life of disabled people, rather than running the risk of abandoning them to state entities, or indirectly linked to difficult administrative machinery which, in the midst of an economic crisis, would not make much of a case of people segregated in normal times, because they are considered unfit and sorted by recent genetic advances.
Freedom of choice and respect for speech raise two fundamental concerns about systemic mistreatment, which will most certainly be aggravated in armed conflict and humanitarian emergencies.
I would first like to come back to the definition of “institution” that will be at the heart of our observatory’s recommendations.
The name «institution» in this restitution must be understood in the sense of institutions subsidized by the State and manager of beneficiaries, thus creating a separation from ordinary life.
We think that these establishments should now be called «places of segregation», an unequivocal and pragmatic definition; taking care not to be fooled by other titles that return to the same separation: like recent «inclusive habitats» frenchman. A lure while it is still segregation but nicely dressed. By allowing the term deinstitutionalization to invade our demands, we are suggesting that the institution is not for the disabled, and states are washing their hands of it by simply changing the name of these places unworthy of human rights.
Now, I will talk about concrete risks, based on the example of what worries us today in France:
In the event of conflict and crisis, eugenics is a major risk and recent positions in France and elsewhere worry us.
There is a screening test for trisomy 21, during pregnancy, which must be consented by the mother. We remember the recent case of Poland, which condemned this screening and violated the freedom to abort women. But in this case, we also participate in validism, by estimating a life of lesser or lesser quality to come, by removing on specific criteria a human. This constitutes discrimination.
Above all, the same process of genetic study is now applied for autism, and France, like other countries, seeks to detect autism disorder before birth. For the moment, it is a question of deciphering isolated genes and creating a scientific literature, but the fact remains, that the danger is the same as for trisomy 21: that is, a possibility of not giving birth to the child on validated criteria. This approach with such an obvious objective must hold our attention at the time of risk situations, such as war.
We know the beginnings of the extermination of the Jews in Europe by the Nazi regime which began in the minds of scientists with the case of the disabled, and which thus wanted to clean up humanity. We also know that in ancient times, infants were left for dead if they had a malformation. The lower or unfit standard of living was the reason given.
As long as our societies persist in maintaining relations with science by having such objectives, and without moreover respecting and striving to make societies perfectly accessible, eugenics still has terrible years ahead.
The right to education in the event of war is an important issue and when you are disabled, it is worse. Access to education is not respected in France with an ancestral separation between the ordinary and the specialized. The National Education is not respectful of the notifications of needs recommended by the departmental houses of the disabled, which analyze the files and allow or not financial and human compensation. France soon plans that it will be the National Education that decides the needs of disabled students; while teachers are not trained, nor any actor of the school, college, high school and university. This system responds to managerial injunctions, purely economic considerations and many children are not educated in school. When they are, it is in places of segregation or specialized classes that repeat this segregation in a school, without instruction. But there is worse, since the law separatism dating from 2021, family instruction by the legal guardian is subject to an authorization from the academic institution.
We ask that the right to education be respected, and that the best interests of the child be at the heart of education policies, leaving the possibility of instructing a child in an ordinary or family environment.
Intimacy will certainly be the last concern of leaders in a crisis.
In France, the right to privacy is already not respected for the disabled.
The National Advisory Council for Persons with Disabilities, a governmental body, and APF France handicap, an association that manages segregated places, are planning to experiment with sexual assistance in these institutionalized places. Under the pretext of rendering an effective right to sexuality, these entities perpetuate intimate dependence. We ask that this type of experimentation be lifted, because it does not respect the right to privacy, because under the management of the State, and all the more taking place at the heart of institutions condemned by the convention.
Forced sterilization is present in Europe. Here too, in order not to relive the tragedies of the past, in case of war and crisis, it is important to seize it immediately. The economic crisis pushes to agree on a method of regulating handicaps, with a view to profitability.
Since yesterday, in France we are witnessing the launch of the Estates General of Mistreatment: the height of hypocrisy for a country that creates discrimination and segregation. Social issues related to the end of life are emerging radically in our societies in crisis and war. Still in France, the recent citizen’s convention on the end of life echoes the experience of other countries in the matter. Far from ignoring the reality of people and their suffering, we worry about potential drifts leading to legitimizing an easier end of life rather than an active life made possible. It seems to us that a convention on palliative care or on the effectiveness of access to a «good life» would have more legitimacy in so-called progressive societies.
We ask to strengthen the international conventions in this sense, and to demand a balance between the provisions of accompaniment to the end of dignified life with palliative care and the efficient provisions concerning the well-being of the living, in all areas of life.
According to the UNAFAM barometer dated February 13, 2023, 63% of French caregivers are forced to sign hospitalization requests without consent.
This is an act of violence that abolishes consent and violates the IACHR.
This is forced treatment and constitutes a crime. In case of war, crisis, we can expect a perpetuation of what is happening in France - a country that reinterprets articles 15 and 29 of the convention, questioning the notion of consent and endorsing medical treatment of disabilities.
Consent must be maintained at all stages of the proceedings, and guardianship judges must be as close as possible to the individual’s need, apart from valid considerations.
Thus, from the French case, we propose to reform the social services of states to adopt the human rights approach and move to a system of personal assistance of independent living.
For this, access to the reality of the workings of the medico-social and associative sector is fundamental. Several steps can lead to it:
> require the signatory states of the Universal Declaration of Human Rights to make public the funding of segregation institutions, the number of beneficiaries and the distinct rights granted. Europe continues to invest in such places, which is prohibited. In France, there are 20,000, concerning children and adults.
> create an annual ranking of countries that segregate with maps to visualize the parties involved, management associations, governments, whistleblowers, activists. The media relay of this ranking would develop unique opportunities for citizens or non-governmental organizations to seize international jurisdictions, which must be heard as a priority on this subject and as a natural person, or legal entity.
> ask management associations to stop advertising special schools, segregated work or so-called inclusive housing. These institutions violate human rights and emanate from a state, which does not sanction this form of upstream treatment.
> sanction new openings of institutions, subsidized directly or indirectly by the central state, whether they take the form of «home», day care center, and whatever the size.
The pooling of families to create an institution in association requesting public subsidies must be strongly sanctioned; unless it is subsidized directly by the families concerned. In this case, they must be monitored by independent international bodies.
> converting segregation sites into coordination places for personal assistance. The people who work in these places must be chosen through collective mediation in the image of Swedish cooperatives. These places are managed by the users, decisions taken according to the well-being only, and the living assistants recruited not the disabled. The support of disabled peers is essential and must replace state management, relayed only to economic functioning.
We note a validatist society, which in France with the complicity of the State and management associations, relegates the disabled to a social death, from school to their private life.
If the accessibility is not efficient, no state must control the assisted, that then become the disabled, by asking to constitute administrative files that are heavy to access financial compensation. If the country does not invest in optimal accessibility, it does not have to demand from individuals, regularly and for all areas of life, proof of their need for assistance; while it is this state that creates the situation of dependence.
We consider France’s relentlessness in circumventing the requests constituting the CRPD reports of the United Nations as a very worrying validity posture.