Mariana de Ugarte is the Galician author of the book “2x21, la felicidad no entiende de cromosomas” in which she narrates her experience and happiness as a mother of two children with Down syndrome.
What would you say is the biggest problem in Trisomy 21 awareness?
"I think the main problem in raising awareness of Down syndrome is the lack of resources.
The biggest visibility campaigns are initiatives of entities such as Down Spain, which do a great job in favor of people with this genetic condition, however I think that this work should also be done in all types of educational centers, from schools to universities, to educate in diversity. And on the part of medical institutions, even in health centers and hospitals, properly training all health personnel so that they know how to transmit a diagnosis objectively, helping to eliminate fears and prejudices.
What is the most difficult inclusion issue you have had to deal with?
"Personally, to this day, I am lucky to be able to say that my children have been well received at all the doors we have knocked on, both in daycare centers, schools, and extracurricular activity centers...But, through my Instagram account and talking to other families who have a child with Down syndrome, I have been aware that this is not always the case. I have received messages, sometimes hard to read, telling me that I should not have allowed my children to be born because of the social burden they may pose.... This denotes a clear lack of diversity awareness, lack of empathy, and tremendous lack of inclusive intentionality. "
What do you hope people will “learn” from your new book “2x21. Happiness does not understand chromosomes”?
"With my book I have mainly intended two things: On the one hand, to emphasize that disability is not an impediment to happiness. We have moments of worry and exhaustion, but joy and satisfaction win by a landslide. I want society to learn to see beyond Down syndrome, and not just look at its features.
On the other hand, I want to help other parents who have just learned that their child has Down syndrome. I intend to calm the fears and anxieties that arise when the diagnosis is received. The fear is mainly caused by the lack of knowledge we have, so with my book I want them to see the reality of Down Syndrome, to know it up close and through my eyes, who already lost their fear many years ago."
Could you describe the happiness your family has given you?
"It's hard to explain. I have always considered myself privileged because I have been happy all my life. My parents have given us a love and emotional stability that I believe have been key for me to feel this way, and I think I have reflected this when I have built my own family with my husband.
But the main key lies in him, in my husband. I realize that we are a good team, that we are very clear about what is important for us and our children, and above all, that we love each other very much, and this is what gives me the greatest happiness in the world. Because I believe that from our love has come the best we have, and that our children's happiness depends on our happiness. For me, happiness is love, and love is giving oneself to others."
What organizations or associations do you recommend to support people with Down syndrome?
"When Mariana was born, Down Madrid welcomed us and helped us a lot to get in the right situation, both bureaucratically and emotionally. But we immediately moved to Zaragoza, and we were able to confirm that the Down association there was going to help us in the same way. In general, people with a great vocation and a special sensitivity work in this type of institutions. For those who have just become parents of a child with Down syndrome, I usually recommend that they approach the Down Association in their province, because that is where they will find the first professional support they need."
How important do you consider shoes in your daily life?
"If you asked my father this question.... I don't want to imagine what he would say! He has always “messed” with me for the amount of shoes I have, and it is true that it is something that drives me crazy.
I think the shoe can determine a whole look. I often start dressing by my feet!
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What would your perfect Cayumas look like?
"It's not an easy question... but since I saw the suede models, I recognize that I loved them. Both the Boheme Bluette and the Fígaro Suede Cinnamon... They make eyes at me!"
