"Thank you for this conference and for allowing us to speak here today.

My name is Capucine Lemaire and I chair DPO, 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 nuisance comes from governments and intermediary bodies impregnated by an already unsustainable system of segregation.  In case of war or natural disaster, and in the midst of economic crisis, the state will not make much case of segregated people in normal times, because considered unfit.
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.

First, in the event of conflict and crisis, eugenics is a significant risk and recent positions in France and elsewhere worry us. 
After the screening test for trisomy 21, during pregnancy, here is the exploration of autism genes with an intention that could be made obvious in times of war or humanitarian risk: not giving birth to the child.  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 criterion of lower or unfit life was the reason given. Let us be vigilant on legislation in this regard. 

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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. 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 National Advisory Council for Persons with Disabilities, a governmental entitie, and APF France handicap, an association that manages segregated places, are planning to experiment with sexual assistance in these institutionalized places. We ask that this type of experimentation be lifted because it does not respect our convention and the right to intimate autonomy.

 

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, in a perspective of profitability. A binding system of jurisdiction must be developed very quickly. 

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Since yesterday, in France, after the citizens' convention on the end of life, we are witnessing the launch of the general states of mistreatment: we see social issues related to the end of life emerging radically within our societies in crisis and war. We are concerned 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 international conventions in this regard, and to demand a balance between the provisions of accompaniment to the end of dignified life with palliative care and efficient provisions.

 

63% of French caregivers are forced to sign hospitalization requests without consent. This is an act of violence that abolishes consent and violates the convention. 

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 moments of the proceedings, and guardianship judges must be as close as possible to the individual’s need, apart from valid considerations. 

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More broadly, we propose reforming 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. 

> 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. 

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> convert segregation sites as quickly as possible into coordination sites 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 hired by disabled persons. The support of disabled peers is essential and must replace state management, relayed only to economic functioning.

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Thank you."