Who am I?
It's strange to answer questions about yourself, especially when you're used to being the one asking questions of others. This is new territory for me.
My name is Gaia Valmarin, and I was born on May 17, 1967. I completed my secondary education as a private student and earned my diploma from the Magistral Institute with a grade of 54/60. Then I enrolled at Lumsa University in the psychology program and graduated with distinction—110 and honors. I went on to earn a second degree in literature with the same honors. Even while I was at university, I was collaborating with magazines and disability advocacy organizations. From 1999, I began working with Uildm Sezione Laziale; starting in 2001, this became a paid position. I served first as head of research and documentation, then as editor-in-chief of the magazine Finestra Aperta, and later as an assistant director of the press office and communications department.
How and when did I discover the illness?
My parents noticed my Spinal Muscular Atrophy when I was six months old. They could see that I couldn't hold my head up or keep my trunk straight on my own. Even today there's tremendous ignorance about this condition among pediatricians and general practitioners—imagine what it was like then. They were told I would die within a short time from respiratory failure. There were many such crises, but here I am.
How did I experience it? How did I react?
Obviously, I was too young in the early years to understand much. But soon enough I realized something was wrong. I don't remember great despair over my limited movement. What I do remember is profound anxiety about the bronchitis attacks that wouldn't let me breathe. Because of fear of these episodes, I didn't attend school. And yes, there were plenty of tears.
How did my parents and siblings react?
My parents took it very hard. They were young, and back then society wasn't what it is now. Today, disability is generally seen as something that can happen to anyone. Forty years ago, they made you feel guilty if you had a child like me. People would turn away on the street; sometimes they'd even make the sign of the cross. My parents did everything they could for me—outings, trips, museum visits, parties with other children. They invested heavily in my education, even when relatives thought the money was wasted. A few years later, we opened our home to foster children; kids from every country and every age came through our house. I wouldn't say I felt like their sister, more like their mother, given the age difference. One of these children stayed with us and through a special adoption became a permanent member of our family. She's grown into an independent young woman now, and it brings me joy to remember a composition she wrote in fourth grade about me: "My sister is my guardian angel, my police officer, my scout leader, my bank, and she's also a little bit disabled."
What kind of relationship did I have with doctors and medical care?
My relationship with these professionals was truly terrible—both in human terms and in how they managed my illness. If it hadn't been for my mother, who cared for me on her own initiative, I would have died immediately. They showed no respect for a child's sensitivity or dignity. They spoke as though I were a piece of meat, never explaining anything or including me in decisions. Even now I see enormous ignorance and carelessness in medical staff. They're always so tragic, but never ready to listen to the patient or work out solutions. I work in a rehabilitation facility now, and when I pass through the floor where children have specialist consultations, I still feel the same way I did then when I see families waiting.
What kind of relationship have I had with "the others"? Friends, schoolmates, relatives, and fellow patients?
As I said, I couldn't attend regular school, but as soon as it was possible they enrolled me in catechism class. I was incredibly lucky because my parish, Santa Maria Stella Mattutina in Belsito, Rome, turned out to be one of the most welcoming and open communities I've ever known. That's where my lifelong friendships were formed. It's hard to make people understand that we're not talking about the usual charity work toward a disabled person. I did everything with them—went to parties, went out, did all the things any other girl and teenager would do. I did it all with them.
This continues now that we're adults and no one lives there anymore. Their children have learned to draw this aunt with wheels underneath. The problems start in adulthood, because it's not true that people accept disability so easily anymore. There are too many prejudices and too much awkwardness. Many people are convinced that someone with a physical disability must also be immature and unstable. I'd like to tell you how many people I meet who wear spike heels and are genuinely immature and self-centered. I've always tried to approach others, aware that at first my state of immobility can be striking. But by behaving in a natural, understanding, and cheerful way, their discomfort has melted away. My fellow patients? They don't have to be nice and dear just because we share the same dystrophy. That said, my dearest friend, my coworker and partner in fantastic adventures, has the same condition I do. As a believer, I think there's meaning in everything.
How do I react when I sense discomfort in others about the illness?
By putting myself in their shoes. Obviously, if you find yourself face to face with someone who moves only her face, speaks in a low voice, and dresses like a model, you're going to feel a bit thrown off! I try to put people at ease even though I'm quite shy myself. At work it's different, because my skills are equal to everyone else's.
Has the illness prevented me from achieving a dream? A life plan?
Yes, definitely. I don't have a strong calling for social work. I would have liked to work in fashion—sourcing and purchasing for large commercial chains or clothing companies. I have an artistic temperament; I love everything to do with designing spaces and image. Given how severe my condition is, it's practically impossible to do that. I'm very fortunate to have this job. There are people with fewer difficulties than me who have nothing. Besides, my illness makes it harder to build a balanced and stable romantic relationship. I don't think that depends only on SMA, but on fate and the lack of opportunities to meet new people.
What have I managed to accomplish?
I've accomplished a great deal. In my organization, I'm valued and respected. I have many friends and loved ones who support me. I was taught that I have the duty to make the most of my abilities, because there are people who would have wanted to do so much but never had anyone believe in them. I sometimes catch myself thinking that when I sit there sad and brooding, I'm just wasting time. In fact, every day is a day when something extraordinary might happen.
What do I still want to accomplish?
My main goal is to create a peaceful atmosphere around me—security and stability for my future. Not just from a work perspective but also in terms of relationships and feelings. I want the many difficulties and hard moments I've faced to make me a better person, so that I can give some meaning—or even just some motivation—to those I meet.
Gaia Valmarin, 2011
