Shirley Alvarez

Performance Art

"I was diagnosed with the disease called Scleroderma at the age of nine, and was wheelchair bound within a year. Art helps me forget for a little bit about how hard reality can be. Being artistic helps me cope with reality... helps me daydream, helps me imagine, helps me feel like a kid at heart, and be genuinely happy."

Shirley is one of those rare indomitable spirits who, despite being afflicted with a terrible disease that has robbed her of her childhood and a normal life, continues to look for creative ways of expressing herself. She has embraced the darkness of her illness and has turned it into an art form.

“As a child, pure happiness was dancing, was singing, was acting, but mostly it was dancing. You would find me dancing for ten to twelve hours a day and you would never find me sitting. Scleroderma is an autoimmune disease that mostly affected my muscular skeletal system. It was a very traumatic experience for me, learning how to be dependent upon other people to help me with my basic daily needs, and I became wheelchair bound within a year. So I learned how to adapt to my situation. I ended up discovering other creative outlets, and I discovered the art of film, making mostly music videos interpreting songs that I love. I have always been a visionary, so it’s something that I really felt natural at.

Recently I’ve established this concept about projecting myself in a very dark way, but also in a very playful, innocent, pure way. I came up with the name Tragic Doll which embodies different aspects of both darkness and light. The 'tragic' part is; my life has been like a tragedy. Being diagnosed with Scleroderma at a very young age has been a living nightmare every single day, but I’ve noticed it’s also been a blessing in disguise. I tend to say I’ve been blessed with a nightmare. I love to be creative in the way I project myself. My skin is very hard like a porcelain doll, so that’s how I visualize myself and that’s the way I can actually cope with reality. It’s not about finding myself, it’s been about creating myself and being comfortable with who I am.

I take my favorite songs that inspired me as a kid and recreate my own video interpretation of the song. Right now I’m working on a song called ‘Situation’ by Yaz, and it’s actually a project that I’m working on with my sister. We’re incorporating dancing, some really dark elements, and fun, energetic elements as well. I think the concept of the video has developed over time, but I wanted to demonstrate and say to a person going through a really bad situation in the past, yes, it’s affected them, but at the same time, they’re trying to overcome that bad situation.

I almost feel like a puppeteer; I feel like Tiffany is my puppet. I live through her. I can’t dance, so she dances for me and brings my vision to life. I’m very limited in many ways, so she’s the extension of who I am. I don’t want to be afraid to express myself and to be flamboyant, or be afraid of what other people or society thinks. I have a lot of conservative friends and family members who sometimes don’t understand the things that I do. They might think it’s ridiculous, but I don’t really care. As long as I’m happy and I’m being genuine with who I am, I think nothing else matters.

Sometimes I wake up in the middle of the night and I have to pinch myself. Is this really happening? Am I really going through this experience? If I pinch myself, hopefully I’ll wake up, but I don’t. It’s something I’ll have to live with for the rest of my life. Everyone has a tragedy, everyone is going through something, and everyone feels trapped one way or another. I just want to be my own person and I feel trapped sometimes in that sense. I love life, I do, and I want to live it to the fullest every day, take one day at a time, be the best person I can be and hopefully fulfill all of the dreams I have. It’s very important that I continue to be creative, because that’s my way of expressing myself, and that’s my way of connecting with people. I really try to be grateful for everything, no matter what.”

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