I would like to thank the Jérôme Lejeune Foundation for having invited Unapei to intervene during the international day. The word international carries a particularly important meaning when used to speak of the place of intellectually disabled people in a society. It is, of course, the choices made by a society for this group of citizens, and not by the group itself, that determines what place they will have in future society. And all countries do not make the same choices.
Beginning of the parental movement
Unapei celebrated its 50th anniversary last year. It devoted the year to accessibility because it believes it is time for France to move on from “having rights” to “the applications of those rights” in order to end the social transparency which determines the everyday life of 700 000 of our fellow citizens.
If the story of the Jérôme Lejeune Foundation is closely related to chromosomal diseases and to the discovery of Down Syndrome, the story of Unapei, on the other hand, started with the mobilization of parents, outraged by the way French society looks at children who are different: these children are qualified as incurable and uneducable…. All over France and using they own money, families started to employ people who, like them, believed in the capacities of those children with particular needs. Their intelligence worked differently from ordinary children, slower, much slower sometimes, but they all believed in the fact that these youngsters had capacities worth putting forward. The first IMEs(medical and educational institute) were created. It was not long before the medical and social institutions looked into what was being achieved and started giving out financial help. Little by little, as the children grew older, the parents having become managers of the means which enabled mentally disabled children to access better education and grow better, started building new projects corresponding to new needs: work places, accommodation centres, retirement homes…
What has been achieved?
And now, were are we standing? Even though France has just ratified the United Nation’s convention on the rights of disabled people, associations representing disabled people ensure, in particular within the National Disability Consultation Council, the full application of the 11th of February 2005 law on equality of rights, chances, participation and citizenship of disabled people. The National Conference on Disability which will take place on the 8th of June this year, will enable to take stock of the situation 6 years later (intermediary reviews of the situation are planned every three years). Even if there are undeniable advancements, there is such a gap between the political ambition and the means provided that associations representing disabled people fear there could even be a regression in the place disabled people hold in society.
Unapei defines mental disability as the social consequences of intellectual deficiency. This intellectual deficiency, to which others can be associated, touches people with various degrees of intensity and form. I would like to precise that when I speak of mentally disabled people, I am also speaking of people with autism associated with intellectual deficiency and people with multiple disabilities.
We are now going to evoke these social consequences point by point (7): education and training, employment and lifelong training, habitat, emotional and sexual life, access to healthcare, taking precocious aging into account.
1- Education and training
The law voted on the 11thh of February 2005 puts an end to the old way of doing things which included the different fields of education and the two separate worlds: the ordinary world and the protected one. It puts in place a new way of doing things: Although any child must register into the school closest to his home, if a child presents intellectual disability, his needs in personal accompaniment must be evaluated so that he may benefit from the best schooling possible. What’s more, The Commission for the Rights and Autonomy of the Departmental Home for Disabled Persons had decided on a personalized approach to schooling which is a part of the global compensation plan which all disabled children should benefit from.
Sorry, but that is where the dream comes to an end. Indeed, even though the number of children going to “ordinary” schools has risen considerably, there is a clear lack in the quality of that schooling. Unapei is very glad of the president’s decision to give Senator Paul Blanc the task of writing a report about the quality of that scholarship. It will be handed in on the 15th of May, this year. We asked for this evaluation last September and are glad to have been heard.
2- Work and lifelong training.
During the last National Conference on Disability, the president proposed an employment pact which focussed on helping disabled people to find work while also raising the amount of financial help received by disabled people (AAH) over 5 years (currently, around 721€). Despite this re-evaluation, one can’t help noticing that those receiving AHH still have a revenue 200€ below the poverty line.
As for access to work, several statements can be made: How does one find access to work when one doesn’t have access to education? For those who cannot find access to work in an ordinary environment, there is a lack of places in the ESATs (French organizations which help disabled people to find work) and the existing ESATs do not have enough means to ameliorate or maintain the means of production due to insufficient endowment. The same statement can be made for the organisms in charge of financing access to employment for disabled people. There is a transfer of competences without any transfer of means.
As long as disabled person will have to count on his family or associative accompaniment in order to be sure he will be trained and then find a job, it seems to me our society has not fulfilled its duty of respect towards intellectually disabled people.
As for lifelong learning, there are results thanks to the initiative of various associations: validation of acquired skills is being put in place and disabled people can measure their capacities, be reassured and acquire more competences.
Individual or collective, habitat is a failure. Disabled people are quite often condemned to living with their parents when others, at the same age, are lucking enough to start a family or live an independent life while entertaining adult relationships with their parents. A mentally disabled person who is capable of living on his own, quite often doesn’t have sufficient revenues to find a place to live. Access to social housing is no better than it is said to be. There is such a long waiting list! The same goes for collective home centres for disabled people. These centres are financed by the District Councils who say they are “financially under water”. The necessary work for motor handicapped people is not being achieved as it ought to be.
4- Emotional and sexual life
A fair number of medical and educational centres, such as the « family planning», have started offering sexual and emotional education, amongst other things. It is a good thing for a person to know how his body works and receive education enabling him to respect his and others’ emotions, feelings and bodies. One can only deplore the fact that, due to a lack of available accommodation or because parents are against the idea of letting their child live on their own, the only place a disabled person will be able to have an intimate sexual life is work and he will therefore be breaking the rules. Let us be glad when our children open up to intimate love emotions, to sexual life. Ordinary children come to an age when they do not ask for their parents’ permission, take risks and, usually, get it all wrong. And when that happens, parents are usually there to help. Not always, but nearly. What is a good thing for one person is also good for another…
5- Access to information
How could one decide when one does not know how to read or does not understand what is being said? For years, Unapei has been mobilized to make information accessible. A standard does exist: the “easy to read and understand”. We wish this standard to integrate the whole of administrative production whether in paper or digital format.
6- Access to healthcare
Generally, care for motor-disabled people has a curative aim rather than a preventive one (Jérôme Lejeune does not do things that way). Very few people with intellectual disabilities are used to seeing dentists or gynaecologist. Why? A general practitioner’s speciality is care but there is no caring without human relationship. And for a relationship to be positive, one needs to understand the person one’s facing. The initial and lifelong training of a general practitioner does not take into account persons with intellectual disabilities enough. Pr. Réthoré never stopped saying so. Advancement really takes place when one acquires an individual conscious rather than a collective one. It is vital that persons with mental disabilities may coordinate care and accompaniment and go to centres which have sufficient means for motor-disabled people, where they can be taken care of.
7- Taking precocious aging into account
The French president had announced a debate on dependence. Unapei managed to be convincing in the fact that it was necessary to include disabled people into the debate, in particular in regards to aging. Unapei announced in 2008 that 15 000 motor-disabled persons were awaiting adapted solution, in its network only. In 2013, they will be 30 000. Unfortunately, this has not in the least bit had any impact in the political world, apart from the integration of disabled people in the debate concerning dependence. We are expecting concrete budget funding as soon as 2012 so that motor disabled people may grow old, living their life with as much dignity as they did when they were young. Unapei has made a lot of suggestions, taking into account all the different situations people are in. When they grow old, who takes over when the parents are gone? We consider it as being the vocation of our families’ associations. And so that you may all be aware of what they represent I will now explain.
What is Unapei
It is a federation of 600 associated parents and friends who defend intellectually disabled people and their families. 60 000 families are members of the federation. Its first mission is to take into account the social dimension of disabilities. Most of the associations, and that is the real force of our movement, have created and handle the solutions which enable disabled people to access better education and be better integrated in society. This used to be provided by centres. Today, one can benefit from over 3000 different services without leaving home. 80 000 professionals are employed by the different associations to fulfil these various missions. It is a real economic force which gives the dialogue with public authorities more power when trying to put forth the rights of mentally disabled people. And as you can see, there is still a long way to go. Apart from funds, we need more parents and friends who are likely to join us in order to win the battle. If I have managed to convince you, please share the message.