The value of believing in their dreams
Sometimes, when Mirella Aria’s phone rings, there’s a pediatrician on the other side of the line requesting her help. A new baby with Down syndrome has been born in Panama and along side that brand new human being there’s a couple of parents that are grieving the dreams they believe they have to let go.
When this calls come, Mirella and her daughter María Jose –who out of fondness everybody calls Majo- get in the car and, withouth any tears or drama in the vicinity, visit the new baby. They are a mirror in which the new parents can see their possible future reflected. A future filled with challenges and joys in which there is no room, if Mirella has her way, for any disquietude.
The next 6th of January marks 18 years of the day that Mirella gave birth, in a hospital in Guatemala, to her first daughter, Majo. She was a small child with almond shaped eyes and the most precious little ears and Mirella held her in her arms, happy, without ever thinking there was anything wrong with her.
But soon the doctors entered the room, in what Mirella can now only describe as the most tragic procession, tripping over themselves while trying to present her with their diagnosis. And Mirella, without beating around the bush, went from asking them, upfront, if they were trying to tell her that her daughter had down syndrome to inquiring about the steps and therapies that had to be implemented in order to assure that Majo had the best possible development.
Her reaction was, for everyone around, a surprise. It was inevitable to expect that at some point the diagnosis would overwhelm her but, close to 18 years later, she has made room in her life to the challenges but not to the sadness.
“It’s a matter of work. Being a mom is work and being a mom of a person with a disability is understanding that disability to be able to provide them with the tools they need to achieve their dreams”, Mirella explains.
For her, it’s a work in which she constantly ends up learning new things and gets to experience, with every accomplishment her daughter achieves, a sense of satisfaction that she cannot quite find the words for.
She did, right from the beginning, everything: stimulated her motor skills, devoured every possible information regarding the functioning of her daughter’s brain and went around the house with Majo retelling out loud every little thing she did. Anything that could help her develop her potential.
That way of thinking was so ingrained in her mind that when her second daughter, Adriana, was born Mirella felt like she didn’t know how other parents had fun with their kids. Every game she was accustomed to was loud and had an objective, every game involved raising the arms of her baby or repeating movements until a big accomplishment, like the infant sitting on their own, came.
Those constant stimuli, essential and permanent all throughout Majos life, are responsible for the admiration everybody fells upon meting her for the first time. She reads with ease, grasping concepts without difficulty, and the fluidity with which she expresses her ideas have made her protagonist of interviews both on radio and on print media. She recently gave, in front of a classroom full of disbelieving teachers, a talk about dealing with disabilities in the classroom. With a power point presentation she made by herself.
A little over 4 years ago Mirella decided to change her corporate job in order to, as her daughter explains to everyone who asks, work full time for Majo. This includes th work she does along side Down Panama, an NGO in which she is part of it’s Board of Directors. She explains that her time with Majo created within her a necessity to share with the world her experience:
“They are blessings, not little angels as some people like to think, but they bring something positive to the people that surround them: they change the filter with which we see life”, she shares.
While sitting on the living room of her house, Mirella admits that it isn’t always easy. Since the beginning she explained to Majo, with the utmost attention, her condition. How every cell on her body had an additional chromosome, so she could understand why most things would challenge her more than anybody else around her. But she always, always made sure, that Majo knew that that wasn’t a limiting factor to what she could or couldn’t dream about.
“Our dreams are what drives us all”, she explains while sharing that, if she could get a message out there to the families of people with disabilities it would be that they should, always, believe in their capabilities and allow them to dream and do the work it’s necessary to accomplish those dreams.
Their turn in the limelight
Incorporating theater as part of the therapy for people with Down Syndrome was an idea that took shape, little by little, on Mirellas mind.
“For many parents, speaking and communication is a topic that it’s always on the forefront of their minds. It occurred to me that theater could be a real communication enhancer and could even help them to use their body in order to better express themselves”, she recounts.
With this in mind, a chance encounter with the producer Alida Gerbaud resulted that, less than two weeks later, there was a full team of people committed to staging Rogelio Sinan’s Cucarachita Mandinga, a Panamanian children’s adaptation of a traditional Indian story.
With this first experience in the limelight they achieved what they dreamed and a hundred things more. Close to a thousand people went to En Circulo theatre for an experience that, in one way or another, changed their perspective on what people with Down’s syndrome are capable of.
The audience joined the change that the kids without disabilities in the cast and the sound and light operators had already experienced while watching them, day after day, practice their lines and cues with a smile on their faces. Never letting their spirits falter even if they were tired or had to repeat the same scene time and time again.
For Mirella it was a way to expose the effect that her daughter Majo has on everybody who meets her, that admiration and surprise that follow her everywhere she goes, in front of an audience that is not necessarily in contact with disability in their everyday lives.
2016 will be a year of new challenges, including the premiere of the documentary Es hora de enamorarse, una historia tras bambalinas (It’s time to fall in love, a behind the scenes story) which, directed by the journalist Guido Bilbao, follows the staging of Cucarachita Mandinga and gives a privileged, exciting and captivating look behind the scenes view of the lives of the 12 new actors with Down syndrome and their lives outside of the stage.
After a year of absence, a new inclusive play will be on the national theater agenda on April. In this occasion it will be with an original book which story will come together thanks to the songs of the Panamanian singer and songwriter Ruben Blades, who donated his popular music to the play.
The challenges ahead
For Mirella and Down Panama, the topic of disability should be worked with special attention to three main pillars: the population with disability, society and, lastly, the family and the specialist that are in charge of their education. In Panama, she explains, one can talk of acceptance but not necessarily of inclusion: the difference between understanding that there are people with disabilities in the world and really being capable of seeing them as productive members of society.
Facing the stigma that surrounds disability isn’t easy. In Panama the law tries to encompass the inclusion of people with disabilities, but the reality is that few public schools are prepared to receive such students and only two private schools in the capital have dared to rise to the challenge.
To really start a different process requires, in the opinion of Mirella, a change of chip: starting with the way families deal with disabilities. Families, educators and the whole of society need to be able to see past the disability, past the traits that make them different, and start thinking of them imagining the things they could accomplish. “Every person that, for one reason or another, has to make an extra effort to achieve their goals possesses a different sensibility that shapes and betters society”, she declares, convinced that a more inclusive Panama, a Panama with a better understanding of it’s own disabled population, would be a better country.
In only 16 days Majo turns eighteen. She will spend the holidays with family in Guatemala and Mirella, almost without realizing it, laments her absence with frequency. “ “The best part of me isn’t here”, she says.
Work originally published in spanish in La Prensa Newspaper on the 21 of December, 2015.