SARAH FERGUSON, PRESENTER: For New York-based Australian artist Theresa Byrnes, life is one big canvas. She puts her body at the centre of her work and interacts with her materials - ink, feathers, paint, mud, even her own hair. And she doesn't let a rare degenerative disease get in the way of anything. At age 45, according to her, she's made her biggest mark yet, with the birth of her son, Sparrow. Monique Schafter spent time with Therese as she prepared for her latest show.
MONIQUE SCHAFTER, REPORTER: It's Saturday afternoon, and in one hour, Theresa Byrnes will perform in front of a packed-out art gallery.
THERESA BYRNES, ARTIST: I have a rough idea of what's going to happen, but it has a life of its own. That's why it's always really magical.
MONIQUE SCHAFTER: She lives with a rare degenerative disease, Friedreich's ataxia, but nothing gets in the way of her art.
THERESA BYRNES: I've spent my whole life not being limited, or not really being directed by that. You know, it's kind of irrelevant to the freedom that I find in my work, in my life. It is a challenge, but big deal.
MONIQUE SCHAFTER: Today's performance is called Clothed Sparrow Heart and is inspired by the wounded bird she's taken in over the years and her baby son, who she named Sparrow.
Will Sparrow be here today?
THERESA BYRNES: Yes! It'll be his first. The first time he's ever seen me perform.
MONIQUE SCHAFTER: Really? Oh, wow! Wow.
THERESA BYRNES: One day I'll perform with him.
MONIQUE SCHAFTER: Her old high school friend, Nik Rieth, now head of installation at the Art Gallery of New South Wales, is helping Theresa prepare for the performance.
NIK RIETH, ART GALLERY OF NSW: It is the feistiness. She's a little uncompromising sometimes. But I get exposed to artists and there's that factor, there's that tangent that's consistent.
ANNE MARSH, VICTORIAN COLLEGE OF THE ARTS: She says it's about her experience of recently having a child, so we could read the woman in the white dress as maybe, you know, the early manifestation of her life and then she has the child and then the creativity starts to burst forth.
MONIQUE SCHAFTER: After an intense 15-minute performance, Theresa is ready to mingle.
Theresa, how are you feeling?
THERESA BYRNES: Awake. Relieved.
MONIQUE SCHAFTER: Theresa dedicated the performance to her three-month-old son, Sparrow, the result of an unplanned pregnancy.
THERESA BYRNES: There was one condom malfunction in two years with my lover. And bang! I was pregnant. But then I thought, "You know what?: my whole life has been about me making my work. I'm ready to change a little."
MONIQUE SCHAFTER: She is raising Sparrow as a single mother with the support of friends, the art community and her mum.
The ABC has documented Theresa's achievements over the years.
THERESA BYRNES (1996): Let's keep on going and solve this problem, so I can get up and walk.
MONIQUE SCHAFTER: Here she is back in 1998, aged 29, 12 years after being diagnosed with Friedreich's ataxia.
THERESA BYRNES (1998): So, it gets worse until you're in a wheelchair, usually by early to mid-20s. Then it continues to get worse until your voice slurs, until you can no longer articulate whatsoever.
MONIQUE SCHAFTER: Today she struggles to get the words out, but has ways around it.
(Janet Clayton slaps Theresa Byrnes' left cheek with her right hand)
What did you do that for, Janet?
JANET CLAYTON, JANET CLAYTON GALLERY: What did I do that for? Oh, it just - it just restarts the vocal cords.
MONIQUE SCHAFTER: Sydney gallery owner Janet Clayton exhibited Theresa's art.
JANET CLAYTON: Theresa's got quite a strong reputation as an artist and she's exhibited for many years in New York and London, Washington and Australia. So the work varies from $800 to over $10,000.
MONIQUE SCHAFTER: But it's her performance work that really grabs attention.
LORRAINE BYRNES, MOTHER: So she's always had this inner strength that if she knows and believes in something, you cannot sway her any other way.
JOE BYRNES, FATHER: No obstacle is large enough to impede her at all. Nothing stops her.
THERESA BYRNES: Not men. Not money. Not disability. Nothing will stop me. I'm getting to the fricking studio and I'm making that painting.
SARAH FERGUSON: Monique Schafter reporting.