Who are you and what do you do? My name is I Ketut Budiarsa. I am a Balinese man from Kedewatan, Ubud, Bali, Indonesia. I am the head of Yayasan Cahaya Mutiara Ubud which is a foundation run by people with disabilities, for people with disabilities. I am an accomplished artist and an activist for the rights of people with disabilities. I also have Osteogenesis Imperfecta as do my two brothers.

In what way has OI affected your art? Even though my artwork has, at times, been perceived as reflecting sadness, I am always at my happiest when brushing paint on canvas. Painting is a therapeutic outlet and a pressure release for me. It is a natural form of self-expression that allows me to express my life experiences, memories and emotions. Being able to focus what I feel inside to the outside by using acrylic and oils I can freely project my emotions onto canvas. Osteogenesis Imperfecta has inspired by work just as much as it has limited my life. It has allowed me to express my individuality on a level that is certainly not ordinary and for that I am truly thankful.

What projects are you currently working on? I am currently working on hosting an OI Seminar here in Indonesia. We wish to bring together international and Indonesian medical professionals to share knowledge about OI so that we can improve the quality of life for Indonesian people living with OI.

Why do you do what you do? Having a disability in Indonesia is difficult. Life is complicated and we have limited access to opportunities and life experiences. Whilst we may not allow our disabilities to define us our society certainly confines us. My OI has given me an insight into the suffering of others, it allows me to feel empathy for their position and compassion for those who are vulnerable and at risk. That is why I pursue my work with Yayasan Cahaya Mutiara and try to reach out to other people with disabilities who have no help or support.

What themes do you pursue? When we were children my brothers and I decided that our shared natural talent and passion for art into a possible occupation, into a reality that would empower us to be considered valued community members. We were fortunate to meet Balinese artist I GustiMurniashi whilst we were at school and we were drawn to her style of using traditional Balinese techniques with a modern twist. The works for our first exhibition were produced in her honour and showcased her iconic style. This exhibition was opened by Maestro Kartika Affandi, a very famous Indonesian artist. After the exhibition Maestro Kartika became our art mentor and guide. Today I would say that the main theme for my work emanates from the emotions surrounding and connected to my life and living with OI. The style of my work is shaped from the teachings I have been lucky enough to receive.

What kind of work do you most enjoy doing? I enjoy working with oils and acrylics on canvas.

What’s your scariest experience related to your work? The opening of our first exhibition and being afraid that people would not accept or like our work because of our disabilities. Critical.

What’s your favourite art work? My favourite works continue to be those of my first teacher and mentor, I Gusti Murniasih.

What role does the artist have in society? In Bali art is deeply entwined with our culture. It is a way of life. The artist is both story teller and a story keeper.

What is your dream project?
To help many people with Osteogenesis Imperfecta and to open the minds of all people about Osteogenesis Imperfecta. To develop a large community to help Indonesian’s living with OI.

translated into English by Kim McCreanor