UNITED NATIONS

Preamble: presentation of DPO

Our missions:
1- monitor the policies deployed in the institutional, legislative and organisational spheres, the policies of private companies towards disabled people, and support in their actions, the principle of equality before the common law, as well as family support policies.  
2 - develop legislative, organisational and social proposals by gathering experiences and confronting visions of disability in the world.
3- developing technologies for people with disabilities
4- to coordinate and produce knowledge on disability policy and disability-related issues at the international level and to make it available, as resources that have appeared necessary, within the framework of a better knowledge of our societies.

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Our work is carried out during committees convened experts, academics and citizens with disabilities. Entitled COP Handicap 2023-2030 are the recommendations necessary for a major political and anthropological issue in three stages: decompartmentalizing the ordinary and the specialized, organizing the independent life of persons with disabilities and founding a common law.

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Disability is the first discrimination in the world and since the world existed. This systemic discrimination is largely embedded in our societies, which make a perceived incurable difference 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, systematically harms disabled people and their families.

A nuisance that comes from governments and intermediary bodies impregnated by a system of segregation, vet ecu as an impossible fight by disabled people. Risk situations, mentioned by the Committee on the Rights of Persons with Disabilities which invites us to visualize an accentuation of an already unsustainable situation, must be a priority in a world in permanent and composite crisis: security, climate, economic and health.

Indeed, in case 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 administrative machinery that is difficult to follow; and which, in the midst of an economic crisis, would not make much of a case of people segregated in normal times, considered unfit and sorted by recent genetic advances.

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THE DEFINITIONS

Disability, institution and need

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 believe that these institutions should now be called “places of segregation”, an unequivocal and pragmatic definition. By allowing the term deinstitutionalization to invade our demands, we are suggesting that the institution is not for the disabled. Yet «institution» in the sense of public policy defines democratic places and active citizenship, such as school. Institutions are therefore places of equality when segregation places deny it.

Since these two forms always exist in a central state, we must work to eradicate confusion that indirectly contributes to a misleading dichotomy and a misunderstanding of the obvious societal issues.

In this extension, the definition of disability must refer to a neutral anthropological reality, free of moral, religious and paternalistic considerations. A new definition will have to consider the plurality of human realities and neurodiversity. This is about more effective public policies, but also about the first way to eradicate eugenics, which is still prevalent in the scientific world and which communicates regularly and with confidence with governments.

So we need to rethink the analysis of people’s needs, which depends on disability, supply, and using data on the populations concerned, to create a social articulation that no longer rejects anyone, directly or indirectly. 

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FRANCE- INTERNATIONAL LAW AND RATIFICATION

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At the international level, the UN has been calling since 2017 for France to ratify the International Convention on the Protection of the Rights of All Migrant Workers and their Families, and to ratify the Marrakesh Treaty, which aims to facilitate access for the blind, visually impaired and people with other reading disabilities. France is also asked to withdraw its interpretative declaration of Articles 15 and 29 of the Convention on the Rights of Persons with Disabilities, which calls into question the concept of consent, endorsing medical treatment of disabilities. He is accused of fetal genetic screening for Down syndrome and autism. Discrimination and violence in French practices have been identified as harming people with disabilities.

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SPECIFIC RISKS AND IMPORTANT INQUISITIONS BASED ON THE FRENCH EXAMPLE

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Freedom of choice and respect for speech raise two fundamental concerns for systemic mistreatment, aggravated in armed conflict and humanitarian emergency

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Eugenism

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There is a screening test for trisomy 21 that must be consented by the mother. We remember the recent case of Poland, which condemned this screening and violated the freedom to abort women.
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 discrimination.

The same process of genetic study is posed for autism and France, like other countries, seeks to detect before birth the autistic disorder.
For the moment, it is a question of deciphering one or more isolated genes and creating a scientific literature, but the fact remains, that the danger is the same as for trisomy 21: with 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, for example, 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.

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Education

 

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.

Teachers are not trained, nor are any actors from school, college, high school and university. There are supposed to be intermediaries.
This system responds to managerial injunctions, purely economic considerations and many children are not educated in school.

Worse, since the separatism law of July 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.

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Work

In France, the French Labour Code does not apply to disabled workers who are in adapted companies or ESAT:
- they are isolated by handicaps
- they have access only to specific activities;

- they are not paid
- they have no employment contract
- they have no trade union
- they have no right to strike
We ask that countries that have ratified the IACHR bring disabled workers back into the common labour law without any specific article. The latter constitutes discrimination.

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Psychiatry

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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 convention.
This is forced treatment and constitutes a crime.

> 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.

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Accessibility

Universal accessibility is unexpected in France and political communication does not hide the lack of intention of successive governments to resolve an emergency. The economic character is still the only barrier and times of war or emergency have proved that it was put aside hoping for better times.
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, with the help of daunting and dehumanizing administrative tools, proof of their need for assistance; while this is the state that creates the dependency situation.

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Sexuality

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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 these experiments be lifted, because they do 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. The economic crisis pushes to agree on a method of regulating handicaps, in a perspective of profitability.
This is an aberration and a binding system of jurisdiction must be developed very quickly

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End of life

In France, the recent citizen’s convention on the end of life resonates with 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.

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Recommendation for political action 

From the French case, and after the observations and specific proposals by themes, above, we propose to reform the social services of states to adopt the approach of human rights and move to a system of personal assistance of independent life.

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.

> 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 in this sense and emanate from a state that would not sanction this form of thinking upstream.

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> 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 annually by social services at both local and central levels.

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> 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.

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> Ask for clarity and transparency of the disability budget and its annual and multi-annual allocations

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Conclusion

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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.
We consider France’s determination to circumvent the requests constituting the CRPD reports of the United Nations as a validist posture.

We are concerned about the possible worsening of the living conditions of people with disabilities in situations of risk of war and humanitarian emergency. The social norm, in these times made more difficult in these circumstances, cannot disappear if it is not already fought in time a priori without aggravating external difficulty.