- Caroline Boudet and her partner had to fight so that their daughter Louise, carrier of Down's syndrome, is enrolled in a public nursery school in good conditions.
- According to her, the French school is not yet fully inclusive, because we have to fight for hours of AESH (accompanying students with disabilities) and for a disabled child to be educated full-time and sustainably .
- But the reception that the other children gave to her daughter showed that her difference was not an obstacle to her integration into the classroom.
“Inclusive education is a bit like world peace or the end of cancer. Everyone's up for it until it costs: time, money, personal effort, the comfort of their own child, slowing down the pace of class. ” Strong words which testify to the incessant fight that Caroline Boudet and her spouse had to wage so that their daughter Louise, carrier of Down's syndrome, is enrolled in a public nursery school in good conditions.
In The Louise Effect *, which appears this Wednesday, she also evokes with modesty the complexity of her family life, doubts and moments of discouragement. A moving and useful book, which questions about the disability policy in France.
Your story shows how difficult it is to educate a child with a disability in an ordinary environment. How do you explain the fact that the 2005 law lays down the principle of an inclusive school, but that it is difficult to apply on the ground?
This law will be 15 years old, but many parents are still unaware that ordinary schooling is a simple right for their child. And many school leaders are also unaware that they cannot refuse to accommodate a disabled child full-time. However, some of them ask parents to adapt the schooling time of their child to the time of presence of the AESH (accompanying students with disabilities).
The French school is therefore not yet inclusive. It is content to offer a folding seat to disabled students, but does not really integrate them by adapting the teaching. From the large kindergarten section, for certain handicaps, parents are referred to specialized institutes. They must fight every year so that their child is not thrown out of the system.
Is it a problem of means or political will?
Both. Schooling children with disabilities requires significant public investment. But it is clear that the AESH hours are sprinkled. And the very fact of poorly paying AESH shows a lack of consideration for children with disabilities on the part of our successive governments. When the Secretary of State for People with Disabilities, Sophie Cluzel, announces that 361,500 disabled children are admitted in ordinary settings at the start of the 2019 school year, i.e. 23,500 more compared to last year, she forgets to specify that not all are welcomed full time due to lack of solutions. And that some AESH are shared, that is to say that they work with several children, or even in different establishments.
You describe your struggle to get hours of AESH. Do you think that the media coverage of your situation has accelerated your case?
Certainly yes. And we got 15 hours of support for our daughter over 24 hours of class. But this administrative victory has a bitter taste, because we obtained it by communicating about our situation and also because we understand the administrative language. This allowed us to appeal certain decisions. But what happens to parents who do not have the same resources? It is an injustice that they do not get the same help.
We feel your moments of discouragement, of loneliness ... How do you manage to regenerate yourself constantly to continue fighting?
When you have a disabled child, you can't just sit on the floor and cry. You have to rebound constantly. And writing books and Facebook posts has given me the support of those who are going through the same ordeals.
The educational teams you have encountered seem to have received little training in disability. What should be improved, in their initial training, to make the school more inclusive?
We cannot ask a teacher to know the specifics of all disabilities, but we can train him to adapt his teaching methods to children who learn differently. We could also decide that as soon as there is a disabled child in a class, it is split or that a specialized teacher is appointed in addition.
The true inclusive school is it not, finally, in the reception which was reserved for Louise by the other children…
I was afraid that she would not have friends, that the children would laugh at her. But the other students accepted her, taking care of her in the yard. And the fact that she doesn't speak and that she is still wearing diapers is not a problem for them. They have no preconceived ideas about it and have very touching interactions.
Your work also depicts the "Louise effect", namely that his handicap also brings out, sometimes, the best in everyone ...
Some people are allies: parents of students, teachers, animators, stewardess… Are they because they have a loved one with a disability or because they want to help naturally? I do not know. But their gestures or their words help us on a daily basis.
You often talk about your feeling of guilt towards Louise's brother. How do you manage to get rid of it?
By freeing up time for him, so that our whole family life does not revolve around Louise's handicap. And we spend a lot of time explaining to her the different steps we take for her sister.
You modestly evoke the ordeal that represents for the couple, all these incessant fights. How do we overcome it?
The handicap adds reasons to be stressed, to disagree and reduces the time of the loving couple. Hence our vigilance to keep moments of lightness to find ourselves.
You talk about a form of workplace discrimination suffered by parents of children with disabilities. Is it true that they have less promotion, that they are less well integrated into the business?
Like other family caregivers, they must take days off work to accompany their child to medical care, or manage administrative problems. They also sometimes leave work a little earlier and miss evenings with colleagues. This can slow down their career and lead to certain promotions going under their noses.
In addition, many mothers of disabled children reduce their working hours or stop working. This also proves the progress that French society must make to take into account the different consequences of disability.
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* The Louise effect, Caroline Boudet, 19.50 euros
- Family
- Child
- Parents
- Education
- handicap