Neurodiversity runs in our family. That is to say, some of us are neurotypical, others are not, although which is which isn’t always clear. Another complexity: we are a multicultural family. My husband is French, I am Mexican-American, and our French-born children have lived equally as long in Europe as the United States. I have often been asked to describe my experience of raising a child with a disability in France. Quite simply, I could say its “just a different place” as Emily Kingsley wrote in her famous essay Welcome to Holland. If you have never read it, click on her photo at the end of this page.
The different place, however, wasn’t just a metaphor. I literally had to learn a whole new medical vocabulary in the French language when our son was diagnosed with epilepsy at three months. After it became clear that he was not meeting the usual developmental milestones there were more new words and acronyms including TED. In 1996 a pediatric neuropsychologist in Paris told us that our child was “autiste”. I knew the word autistic in English but did not grasp the full meaning and implications until my son taught me. Twenty years later I am still learning. There was no guidebook in English to help me navigate the complex system of health care and special education in France. After moving to the United States, it took more than a command of English to learn another system equally complex and socially unjust. Fortunately, as Ms. Kingsley promises, I truly do meet some extraordinary people in France and America that I otherwise might never have met. Tirelessly advocating, continuously inspiring, they have provided support throughout our figurative and literal journey.
Yes, it was difficult and that pain never, ever went away. No matter where we travel society treats people with disabilities differently. In both countries it is a constant uphill battle for families to obtain even basic human rights and dignity. In France, we had great difficulty to obtain an inclusive education for our son. In America, we faced near financial ruin due to the cost of anti-seizure medication, therapies not covered by our private insurance, and adult programs once he aged out of mandatory services. But as the author of Welcome to Holland points out: if you spend your life mourning you may never be free to enjoy some very special very lovely things. In my own experience, it has always been the grassroots efforts of parents and advocates to raise awareness that leads to the most effective change on both sides of the Atlantic. Globally, there is still a long way to go to battle indifference, erase misconceptions, and improve the quality of life for the world’s citizens most vulnerable to exclusion.
Cultural exchange can be a formidable vehicle to create sensitivity and encourage acceptance as the Arts embrace diversity of all sorts including neurodiversity. Frog & TED provides a key to open the door to French culture and the Arts for people of all abilities. It proposes a moment to “catch your breath and look around” Paris and beyond. A family vacation or even an outing together provides essential oxygen and needed respite to those with special needs and their caretakers. The information in the following articles will empower everyone, whether you are traveling to Paris for vacation or call the Hexagon home, to enjoy some very special, very lovely things….. about France.