Just as I began understanding my illness and its limitations, the awareness of my capacity to do more grew. I began to think of all the things I could achieve. This marked the beginning of artistic expression in my life.
BUENOS AIRES, Argentina—I am an aerial dancer and a member of a dance troupe, but my art exists in a world kept nearly hidden from the rest of society. I am one in 50,000 people born with a rare genetic disease called Friederich’s Ataxia.
Diagnosed with Ataxia at 19 years old, I lost my ability to walk without someone holding each of my arms. Eventually, I began using a wheelchair.
People like me experience problems ignored by most of society, but together through the arts, we can achieve change. As an instructor, I help children and peers with disabilities to see themselves differently.
We take on projects and partner with other groups in a constant search to broaden the cultural, artistic, and symbolic horizons of society toward inclusion and integration. We seek equal human rights and respectful coexistence.
Young man slowly loses his ability to walk, confining him to a wheelchair
At 13 years old, I showed the first signs of scoliosis. Six years later, I began experiencing discomfort in my body. Doctors performed tests, ultimately sending me to a neurologist. After my diagnosis I learned that Ataxia damages the nervous system, affecting the spinal cord and nerves controlling the movement of my arms and legs.
My mother discovered that a larger population of Spanish speakers with Ataxia lived in Spain. We traveled with my brother, who is carrier of the disease, from Argentina to Spain. Going to Spain opened my mind to new possibilities because I met people like me. I wanted to try and live my life as normal as possible.
Back home, I continued going out and attending recitals but soon needed someone to hold my arm to walk. Then, I needed people on each side of me. Before long, I needed help from other people all the time.
When I left for a trip to London to visit my cousin, I asked him to rent me a wheelchair. Sitting down in it for the first time, I felt like I could finally relax. Losing my ability to walk kept me from being mobile. The wheelchair made me feel comfortable. In addition to my wheelchair, I bought a scooter from London and began going to places near my home. I gained a lot of independence.
Dance sets him free
As my mother was busy setting up The Civil Association of Ataxia of Argentina (ATAR), I grew in awareness of my illness and its limitations. I wondered what I could do to better my life. Then, a teacher we knew proposed I take aerial dance classes at a circus space nearby.
I had never done anything like dancing in the air with a harness. I gave it a try and my excitement grew quickly. At first, someone had to help me, but soon I could do the whole class by myself. I loved it and began testing other techniques using fabric, a trapeze, and rope. The moves were much more difficult without the use of one’s legs, but I persevered.
Seeing my motivation, the staff suggested I become a teacher for children with disabilities. The awareness of my capacity to do more grew and I began to think of all the things I could achieve. This marked the beginning of artistic expression in my life.
My art told another story, from the inexplicable difficulty of being confined to a chair, to the freedom of movement I experienced in dance.
Dance Without Borders offers new opportunities
I began to wonder if the flow I experienced in aerial dance could be done from my wheelchair. As I studied the subject, I got a call from Mariana Chilliutti from Dance Without Borders – a dance troupe that includes able-bodied dancers alongside people in wheelchairs.
I attended their rehearsals and before long, I officially joined. Becoming a member of Dance Without Borders six years ago was like boarding a train that never stops. That train continues moving forward every single day.
We meet to rehearse in a room with a wooden floor. Two of us dance from our wheelchairs with five other dancers. Three more people work with us in production and direction as we explore tango, folklore, and contemporary dance.
The activity at rehearsal is guided by what we call presentation proposals. We try things out and improvise based on the needs and desires of the group. Though we receive direction, it never feels rigid. We embrace the input of each person. Moving in sync with love, we fit together on stage as we carry out our plans.
This is how my days play out. I work from morning until early afternoon as a computer repairman. I take my scooter to rehearsal and carry everything I need to my wheelchair. We warm up and begin, and we dance throughout the evening.
The world for people in wheelchairs
Being a person in a wheelchair interacting with the world, I encounter an environment somewhere between difficult and hostile. So often, public bathrooms are not adapted for wheelchair accessibility.
People lack education and experience misinformation, creating a predisposition of ignorance. The laws in Buenos Aires indicate that whether public spaces are new or old, they must have an adapted bathroom, but accessibility remains an afterthought.
It makes it impossible for me to move. While there are exceptions, it seems like most architects get things done without accessibility in mind. So often, we are invited to perform somewhere but when we arrive, we find steps backstage. There are usually no ramps and if they do exist, they have steps between them. It makes no sense.
This even occurs at public and private hospitals. The city has many ramps but needs more. People like me struggle to reach the subway and travel on buses. Despite all of this, I try not to be at odds with the context that surrounds me or to project that hostility back onto my environment.
Changing society one person at a time
As a member of Dance Without Borders, I want to transform people’s minds, so they no longer see us as strange. We continue to find ways to do what we do best, which is dance, but I have future projects in mind.
Continuing to teach is essential. Art proves transformative for my students. They become someone new and gain a greater presence in society. Dance awakens them, improves their connectedness, and allows them to have new reactions to life. They gain strength and security.
I will continue dancing, and ensure we remain connected to the broader vision for our community. During the pandemic, we joined a group called Frente de Emergencia de la Danza or Emergency Dance Front, a strategic collective of groups and organizations that work together to obtain resources. Together we generate projects, raise support, advocate for, and fund dance for everyone.
The collective connects countries around the world and allowed many Latin American countries with minimal economic resources to attend the third annual Latin American dance conference.
Both locally and with the collective, I plan to work with disabled people in the arts, dance, and circus because we believe all people have the right to enjoy these outlets. As artistic vision calls to us, we see that our dreams can materialize.
Translations provided by Orato World Media are intended to result in the end translated document being understandable in the end language. Although every effort is made to ensure our translations are accurate we cannot guarantee the translation will be without errors.
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