The mother on hunger strike for her daughter
Dan MacGuill · 19 Jul 2013, 09:50
Published: 19 Jul 2013 09:50 GMT+02:00
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Who is Jacqueline Tiarti ?
She’s a 29-year-old mother of a 7-year-old girl with autism, who lives in the suburbs of Paris.
Why is she in the news this week?
On Friday, she entered the 11th day of a hunger strike, in protest at what she sees is the failure of France’s Health Minister, Marisol Touraine, as well regional authorities in the Paris area to respond to her pleas for adequate and appropriate help for her 7-year-old daughter Melissa, who has autism. The hunger strike, which is putting her life in danger, is also to protest against the methods used in France to treat autistic children.
How is her health?
Not good, it would seem.
“I’ve been on hunger strike since July 9th, and I’ve lost 4 kg already. I’m beginning to feel very weak. My health is really suffering,” Tiarti told The Local this week.
“I just spoke to my doctor, who told me that if this continues, I could go into a coma.”
Asked whether she was willing to go that far, the defiant mother replied: “I don’t know. But I know the risks of what I’m doing, and I’m very determined,” she added.
“I’m here to show the [French] state the decline in my health, so that they’ll start to pay attention to the health of our children,” she said.
What exactly does she want?
Mainly she wants to have access to Sessad (special education service and home help services) which would provide a specialist teacher, trained at working with autistic children, who would come to their home.
She has been on a waiting list for two and a half years, but it seems she is no nearer being granted the help she desperately needs.
The problem she faces in trying to obtain the specialist care stems from the way French authorities approach children with autism.
The treatment of autism in France is highly controversial. In many other European countries, and especially in the United States, autism has for years been treated with behavioural and educational approaches.
There, children are given a rigorous system of reinforcements, aimed at trying to modify their behaviour and help them integrate into society and develop independence.
“Behavioural therapy for autism is scientifically proven, and it really works. In France, on the other hand, its all about psychoanalysis,” Tiarti explains. “And psychoanalysts in France don’t believe that children with autism can play a part in society. They would rather put our children in psychiatric hospitals.”
“France is 40 years behind when it comes to this," she said.
Daniel Langloys, president of the organisation Autism France told Ouest France newspaper: "Psychoanalysis sees autism as a psychosis, an unconscious choice, and it blames parents. It doesn't give children the tools they need to communicate."
Due to the dominance of psychoanalysis, there is a severe shortage of French behaviour specialists, hence the fact she has spent two and a half years on a waiting list.
Parents like Tiarti face an uphill struggle, first of all to get a diagnosis of autism for their child and then to persuade health authorities to give them the funding they need, in order to pay trained behavioural specialists to work with their children.
“We have to fight hard to even get our children educated,” said Tiarti. “The staff in schools are not properly trained to work with Melissa, and so children like her are very often badly cared for.”
“And our situation isn’t exceptional. I’m not unique,” she added.
Is her hunger strike working?
Well, Tiarti says she hasn’t yet heard back from the ministry of health, or the regional authorities for Ile-de-France, but public support for her struggle is growing.
Elle Magazine in France, as well as regional news site Ouest France reported on her hunger strike as did many national news sites on Friday. A Facebook support group set up on July 10th had more than 850 followers on Friday.
On the Facebook page, other exasperated parents of children with autism have shared their own experiences, many of which have been similar to Tiarti's. "I have two children with autism, and I had the same problem last year," said one woman.
"I tried to kill myself in a doctor's office, to show my despair," the woman added.
Tiarti’s supporters have planned a public protest in solidarity, to take place on Saturday at 3pm at the Rond Point on the Champs Elysées in Paris.
At the moment no one, not even Tiarti herself, knows how this story of one frustrated mother's battle for better care for her daughter, is going to end.