I've known Sonia Castro for a while now; she is a smart, strong, outspoken voice for our kids, the woman behind the popular Mama Terapeuta blog. Over in Chile, she's a columnist for a parents magazine, the author of the book Mama Terapeuta and one amazing mom. I'm glad to feature her in my series on kids with special needs around the world. Get ready to be floored by what she has to say—and to really, really appreciate the services our kids get in this country.
When I first knew that Ellen was featuring stories around the world I said: I HAVE to write to her! Because so many times I've wanted to yell while reading her blog something like "You are so incredible lucky!" and explain how different things are where we live. So, here is our story.
My 6-year-old girl has cerebral palsy and severe disability. The worst part is that we live in Chile, South America. I would love to say "No, we don't live in trees! We are much more civilized than people think" but when it comes about disability, we are in caves. Almost literally, because here people with disability are still in their home or care homes, we are in square one about social integration. We have relatively good laws about it but what are they good for if no one cares? It's dead letters.
IEP? Early Intervention Program? Insurance? Nope, none of that here. In Chile, 13% of the population have a disability and the State gives no support what so ever. Well, I'm lying... They can apply to get some funding for equipment and they can try to get their TAXES discounted! Yay! Did I mention we have to buy from other countries almost anything? It's complicated, special equipment is already expensive; consider the average salary in Chile is around USD $800 a month and shipping always doubles the price.
As you can imagine, rehabilitation is left to charity. We have a big Teleton once a year, lots of people crying and sad stories, and society gets to feel like they do so much for people with disabilties. Health insurance does not cover rehabilitation, which is why for us doing something alternative like ABR is much, much cheaper than traditional and private therapy. Yes, I am aware we are upper middle class so we can afford it, but that only makes me angrier because so many people don't get to choose.
But there is more than rehab in our lives. What about education? "Oh, dear, she is in this world just to share her joy with that beautiful smile"—I've heard so many times. We have about 200.000 under the age of 15 with a disability and almost 70% of them go to a special school, where the program usually sucks (by "sucks" I mean they don't even try to teach them reading and writing). We are not even at that point where "severe" cases go to special ed, but almost everyone!
My daughter is due for first grade so this has been my lastest battle: find her a "regular" school, because I don't care what people may think, I know she can learn. That's why I love to be in touch with people from other realities, where children with disability are actually given opportunities, I've even read books writen by young people with CP. And guess what: My daughter has already learned to write! So yes, she can! But I don't even remember how many schools I've contacted, how many times I've heard "no". Who knows, maybe we'll be moving to Canada or the States just to find a school :)
Universal design? Don't get me started... I've been started a small movement called 'Plazas Para Todos' (Inclusive Playgrounds) to try to spread the word about inclusive playgrounds that I think would trully help integration from early ages. So far, only 15 playgrounds in Chile are accessible. Did you know that Chile is a long line next to the Pacific ocean? We have hundreds of beaches and not one of them is accessible.
You can name it and we are far behind. So here are our choices: 1) move 2) accept it 3) try to change it. I know we cannot change the world nor our country, but we are definitely going to try and do our best. I have my blog, Mamá Terapeuta, to connect with others, with and with out special needs, and I wrote a book that got us thru the media, I even went on CNN!
Chile is still on square one with social integration. There is so much to do and it has helped me a lot to be able to communicate with other moms around the world. It helps to know that it IS possible, so keep on sharing and aiming for the best for our kids!
