This January, Risnawati “Risna” Utami became the first person from her native Indonesia to sit on the United Nations Committee on the Rights of Persons With Disabilities. As one of the committee’s 18 members, Utami, a lawyer and activist, is arguably one of the most powerful women in the world when it comes to international law and disability rights. Her rise is a testament to more than 20 years of passionate work on behalf of women and people with disabilities and her refusal to give in to the low expectations of the society where she grew up.
Born and raised in Indonesia, Utami was all but disregarded as a disabled child in her community after contracting polio at the age of 4. Utami describes the Indonesian culture she grew up in as “not accepting of women with disabilities whatsoever.” As the only daughter in her family, Utami saw those dynamics play out in her own household. “My father was initially ashamed and embarrassed,” she says. “My mother convinced him that I’d be OK someday, which was true.” She credits her mom with providing a strong female role model for her to follow. “My mum is a strong figure for me — in the way she raised me, encouraging me to be the woman I am now.”
Even with her family’s emotional backing, financial and social obstacles made things difficult. Utami’s parents were unable to afford a wheelchair for many years during her childhood, forcing her to use a brace. “I’m lucky because my family has supported me, but very few women have that opportunity,” she says.
That support helped Utami thrive academically. She graduated from Sebelas Maret University, an Indonesian university, with a degree in law in 1997, but her credentials only did so much to counter discrimination. “‘It was very difficult to find a job,” she says. “People focused on my wheelchair and disability, and the stigma in Indonesia was difficult to overcome.” After two years searching for work, Utami started volunteering for a local nongovernmental organization that focused on disability. “It fit perfectly with my law degree, and it was a great opportunity for me to learn about the disability rights movement and civil rights movement,” she says. “I’d never met or interacted with other disabled people before — you don’t see other disabled people in Indonesia. I thought, wow, I can go deep and learn more about the disabled world and make a difference here.”
In 1999, Utami applied some of what she learned to help start the Talenta Foundation, an NGO that focused on the participation of people with disabilities in Indonesia’s political arena. During the six years she worked there, Utami wrote prolifically about the intersection of gender and disability, including a book about the importance of reproductive rights for women with disabilities. Utami submitted the abstract of the book to the International Association for the Study of Sexuality, Culture and Society and was selected to present at the organization’s 2005 biannual conference in San Francisco.
Around the same time, Utami applied for a scholarship with the Ford Foundation International Fellowships Program. “I didn’t know until I’d returned to Indonesia that I’d been accepted, and out of 4,000 people, I was the only disabled woman!” she says. The scholarship funded further opportunities for her to study sex education in rehabilitation centers and reproductive rights for people with disabilities.
Just as Utami’s work was beginning to be noticed, she decided to relocate to the United States to further her education and pursue a childhood dream. “As a child, I always dreamt of going abroad, pursuing education and speaking English,” she says. “I just loved watching the TV series Little House on the Prairie, about a family living on the American frontier, struggling to realize their dreams while taking on the great unknown — and then the dream came true for me!”
Before starting her work with NGOs, Utami had only spoken a few words of English. Now, just a few years later, she found herself moving to Massachusetts to earn a master’s degree in International Health Policy and Management from Brandeis University.
Home Sweet Home
In May 2008, Utami returned to Indonesia to start another NGO aimed at helping people in her hometown of Yogyakarta. The organization, named OHANA Indonesia, aimed to provide disability rights, policy advocacy and technical assistance for local governments on dealing with disability.
At the heart of OHANA Indonesia is a series of programs designed to get properly fitting wheelchairs to people in need and to empower wheelchair users. The effort involves training technicians to fit and work on wheelchairs, coordinating with foreign providers to secure equipment and organizing social events to bring wheelchair users together and destigmatize disability. Christiaan Bailey, an outspoken advocate for adaptive sports, who is also involved in many international NGOs, has worked with Utami on her efforts.
“I’ve personally witnessed her program start from an obscure idea and grow into a regional endeavor, then to a national initiative, onto an international movement, and finally, come to its zenith in a seat at the United Nations, shaping disability policy for the whole world,” says Bailey. “Her infectious smile, quick wit and consummate passion for helping others has served as a great source of empowerment for not only myself, but countless thousands around the world.”
Bailey says Utami has a zeal for her work that can’t help but rub off on those around her. “Risna’s life is about making a better life for people with disabilities,” he says. “Not just in her town, city, state or country, but everywhere. As long as she’s out in this world, fighting the good fight for the rest of us, I’ve got her back.”
Additionally, and perhaps most importantly, OHANA opened the doors for Utami to explore the issues she was passionate about on a global scale. “It enabled me to create national and international networks and has led to me working in the United Nations and traveling to conferences in places like Brussels, Germany, Mexico and Ecuador,” she says. “Working together and presenting at huge places like these and being able to influence people to change law and regulations and create disability programs in places like Indonesia is so important.”
Utami takes obvious pride in representing her country, and more specifically its women with disabilities, on a global scale. She thinks it is important that women with disabilities are regarded as sexual beings and are granted adequate sexual and reproductive rights and responsibilities to reflect this. She is equally adamant about the importance of people in the disabled community pushing for change elsewhere, sharing their work and findings and encouraging progress on a global level.
Her passion has made her an outspoken leader in the push for the Convention on Rights of Persons with Disabilities on both a local and a global level. The United Nations adopted the Convention in 2006 to empower people with disabilities and provide human rights guidelines and goals.
Utami has led the Indonesian Consortium for Disability Rights, which has 45 organization members representing eight provinces, to push for CRPD implementation at the local and national level. On the international level, her work has helped get more than 160 countries to sign and ratify the treaty (the U.S. has signed, but not ratified). “Risna is a formidable leader, stellar advocate, and kind and compassionate human being,” says Elizabeth Lockwood, a representative at the U.N. “It is a joy to work with Risna, not only because of her depth of knowledge, expertise and experience, but more so because of her welcoming and warm nature.”
Lockwood, who has worked with Utami at the U.N. since 2014 to advocate for people with disabilities, says it’s obvious why she is so successful. “Risna has always been aware of the importance of her determination and positivity, and what a vital role both have played in her success to date,” says Lockwood. “Her kindness and willingness to put the needs of others before her own is also immediately present in the way she speaks and writes.”
Those qualities and skills were rewarded last June when Utami was nominated and elected to be Indonesia’s first-ever representative on the Committee on the Rights of Persons with Disabilities, a body of 18 experts who monitor implementation of the Convention. Her four-year term started Jan. 1. “Risna is an excellent addition to the Committee on the Rights of Persons with Disabilities on which she will continue to advocate for equality and human rights for all persons with disabilities,” says Lockwood.
Utami is thrilled to represent the long-voiceless women with disabilities of her country. “Disabled women in Indonesia are more passionate and advanced than the men,” she says. “I’m so proud of this. This progress for women has led to my government nominating me to be a candidate for disabled people in the United Nations.”
In addition to her new role, Utami continues to lecture on disability, accessibility, public health and human rights at Gadjah Mada University, Duta Wacana Christian University and the Sunan Kalijaga State Islamic University, all in Yogyakarta. She also writes prolifically and travels the globe for various speaking engagements. Her experiences have only deepened her dedication to her work.
“You can’t find many people like me in Indonesia,” she says. “It’s sad, but it makes me even more passionate to improve the education and quality of life of disabled people there.”