A visit to Paris to see how they work at Ombres et Lumière, our "older sister"? Why not?
Of course, you need to organise things a bit and leave husband and children on their own, then convince yourself thoroughly that the plane, despite everything, is the best way to travel these distances... The language is no problem, after all there's Hubi who knows three languages and on top of that has a smattering of French. We get in touch with Anna Cece, an old Italian friend, who is very kind and offers us not only hospitality in her lovely and welcoming home near Paris, but also a couple of decidedly interesting meetings. After all, three days in Paris must be well spent — unfortunately too little to see the city, but more than enough to encounter realities different from our own and have opportunities for comparison.
Foi et Lumière
It is here in France that the movement was born — in Italy FEDE E LUCE in 1971, after a pilgrimage to Lourdes which, for the first time, involved people with mental handicap, their families and their friends. The community we meet on the Sunday of our arrival in Paris is a young one (Il sicomoro), born after the 2001 pilgrimage, again to Lourdes, which brings together young families with handicapped children up to the age of 14. In Italy there are no communities of this kind: the families who started out with their young children have now grown older without there being any equivalent renewal.
So it becomes difficult to convince a young family with a small handicapped child that they will have fun or find comfort in their suffering without others in similar circumstances.
The meeting takes place in a welcoming little room in a private school, with a kitchen adjoining; there is a courtyard where children can play and a small chapel where Mass can be said (it seems they are not well received in the parish). There are about thirty people, more than half of them families, then married friends with their children in tow and two young women friends. They are also accompanied by an elderly priest, now relieved of his greater responsibilities, very affectionate and close to the families: he tells us he has brought several children from the community to the sacraments, two of them very severely affected, and he surprises us by saying he is not in favour of integrated catechesis. The Mass he celebrates is very simplified and done in a way that engages the little ones well, with many symbols and gestures. The most beautiful thing: seeing a couple of parents — without their handicapped child, who was out on a scout outing — come and actively participate in the community day, to organise the next meeting which was to take place as a retreat in a convent of cloistered nuns. The saddest thing: hearing how much families with a handicapped child are set aside by civil society because they decided to bring a child with problems into the world instead of aborting it.
The Lejeune Foundation
Working to change this deeply entrenched attitude in French society is the Lejeune Foundation, created in the name of the scientist who first identified the genetic cause of Trisomy 21, better known as Down syndrome. His aim was to understand the reasons that cause the defective translocation of chromosome 21 and to seek ways to treat them. Unfortunately he passed away in 1994, but his energetic wife and some of his family members continued to work towards this goal. The Foundation works on the research front, allocating funds for researchers investigating genetic diseases that cause mental retardation, and on the front of assistance and care with a specialist outpatient clinic capable of following the pathologies caused by these same syndromes (more than three thousand cases per year). It promotes events to raise funds and to publicise its activities, since the state does not promote research of this kind, but instead encourages, in cases where a genetic condition or other type of problem is diagnosed, the termination of pregnancy (a proposed law would permit the suppression of a sick child up to 24 hours after birth).
Le Tremplin
At the administrative offices of the Foundation, a young man with trisomy 21 works; he trained for his job at a small centre, unique of its kind, Le Tremplin (the springboard). A full-time director/operator/companion/factotum together with a part-time operator and a number of volunteers instruct, in a Paris apartment, about fifteen not severely disabled young people in activities such as computing, cooking and other manual activities that may prove useful for entering the world of work. Once a week a small restaurant with a set menu is run where, by reservation, it is possible to enjoy a good meal entirely prepared and served by the | young people. These same young people are supported during work placements leading towards possible employment, given that medium and large companies are required by law to have a certain percentage of disabled workers. Some of the young people will not easily find their way into the world of work, even sheltered employment, and in this small centre they have a kind of alternative activity to the specialist institution.
OCH (Office Chrétien des Personnes Handicapées)
Some initiatives of the centre we visited have found additional funding through the OCH (www.och.fr). Marie Hélène Mathieu, after a long experience of encounter with the suffering families of people with handicap, decides to seek a way to alleviate this suffering and founds the OCH. Its mission is: to welcome, to give hope, to support these families.
The OCH headquarters is in a beautiful period building of three storeys overlooking the Champ de Mars (the one with the Tour Eiffel), wedged between two twelve-storey buildings.
On the first floor is the permanent Welcome centre (there is also a branch in Lourdes, with two permanent staff and about a hundred volunteers, never enough...) in which several workers provide support, practical information, publications... to anyone who finds themselves in a difficult situation. Sharing and exchanging experiences to shed light and give hope to those living with the suffering of mental handicap, and doing so by seeking to reach as many people as possible: this is the objective pursued through the magazine Ombres et Lumière, through participation in radio and television programmes.
To reach those who are still alone but also those with no direct experience of handicap, conferences are organised given by Jean Vanier but also by parents, siblings, community workers or in any case people engaged in this field. For the OCH it means expressing the Christian way of being and of facing suffering by appealing to communion and to being close to one another.
Finally, the OCH supports, through the distribution of funds raised from private donations, initiatives in which the life of the person with handicap is shared, some extraordinary interventions (construction of ramps, removal of architectural barriers, aids...), subsidies for the birth of a new "Community of life".
As a legally recognised association, also by the Church, it is frequently called upon to organise extraordinary events (e.g. for World Youth Day, for the accompaniment of young disabled people).
Once a month all the components of the OCH (the welcome centres in Lourdes and Paris, Ombres et Lumière, Foi et Lumière international, the administrative staff — twenty employees in all, some regular volunteers and others ad hoc) meet for an extended meeting.
Each component updates the others on the steps taken; shared work objectives are identified and guests representing external realities are met, with whom certain themes are explored and a comparison is initiated (that weekend we from Ombre e Luci were the special guests!).
Ombres et Lumière
The magazine, our "older sister" as mentioned, began publication in 1968 under the direction of Marie Hélène Mathieu, now under Marie Vincente Puiseux. A reality considerably more complex than ours, more organised, with more numerous paid staff and greater resources.
In an extended editorial meeting we explore the idea of launching an upcoming issue in common, and this gives us the opportunity to enter, for an afternoon, into their way of working. The magazine has around 12,000 subscribers in France (and we feel very small with our 1,500...) but other figures by comparison are more or less similar. Ombres et Lumière has a precise function within the OCH: it is, as already said, the external spokesperson for its mission. And this is precisely the most enviable thing: being able to work feeling oneself part of a network of people with a precise purpose.
Cristina Tersigni, 2005