Women leading Organisations of Persons with Disability: How do we make it happen?
“Timor-Leste is still a patriarchal country. Men are always the leaders. When we go to meetings and do advocacy, it’s always men that we’re meeting.”
This is the reflection of Nona Reis, Misaun Lepra's Executive Director. It is an experience she is familiar with; she took over leadership of Misaun Lepra (the Tetum name for The Leprosy Mission) eleven years ago and faced an up-hill struggle to be taken seriously as a woman in a position of leadership.
Before long, Nona saw that the problems facing her were pervasive. “None of the disability organisations in Timor-Leste were being led by women. The women within those organisations were not seen as potential leaders and they were not being raised up to achieve their potential. It wasn’t seen as a woman’s position.”
Nona knew this had to change. In a culture with few women in leadership positions, life is harder and more dangerous for all women. Their voices are not heard or respected in wider society and in the home.
Gender-based violence is a serious issue in Timor-Leste. According to the World Bank’s Gender Data, 38 percent of women between the ages of 15-49 in Timor-Leste have experienced intimate partner violence. Women in Timor-Leste are also more likely than men to be working in vulnerable employment (80% vs 54.2%) and women in Timor-Leste have an adult literacy rate of 66.5 percent.
“If all women have difficulties in Timor-Leste, how much harder is it for women with disabilities? Without opportunities to lead, women are left behind; they will stay at home, they don’t have a voice, only men go out. When women with disabilities are forced to stay at home, people are not aware of the support they might need, the things that help them to get by.
“We know that gender-based violence is a major problem for women with disabilities in Timor-Leste. We try to help and we try to protect them, but we cannot be there all the time. With the right knowledge, skills, and confidence, they can get themselves out of these situations. Education is the key.”
As Misaun Lepra began a process of building and strengthening Organisations of Persons Affected by Leprosy (OPLs) and Organisations of Persons with Disability (OPDs), Nona made a point of building up women as leaders. Today, three of these women are in respected positions of leadership and have travelled through not just their communities and country, but the world, in order to have their voices heard. These women are Norberta, Luisa, and Ivonia.
“For many people in Timor-Leste, including many educational institutions, education and learning was not something for women with disabilities. We had to show them they were wrong.”
Nona’s journey started with identifying young women in whom she saw the potential for leadership. Because of her belief in the power of education, she knew that the first step for these women was education.
However, to take this first step, Nona and her team had to create space for women with disabilities within academia in Timor-Leste. They worked with their partner OPDs to advocate for a new Diploma course in Community-Based Rehabilitation, which has now led to the establishment of a Social Inclusion Department within the national universities. Two of Nona’s young leaders, Ivonia and Luisa, have now been able to study at university to achieve Diplomas in Community-Based Rehabilitation.
“They have shown that women with disabilities can study at university. That is powerful. But they have also grown because of this experience; they have met new people and gained confidence in speaking in public.”
This education was not limited to university, however. Ivonia and Luisa have both had internships with Misaun Lepra and have taken part in training, workshops, and mentoring. Through this, they have learnt about organisational management, finance, HR, and safeguarding.
Thanks to this education, training, and confidence-building, Luisa and Ivonia are now leading one of Timor-Leste’s Organisations of Persons Affected by Leprosy.
“Many small organisations in Timor-Leste are registered but they don’t have simple things like an office, desks, phones, or laptops. We wanted Luisa and Ivonia to have that. It makes it real for them. Sometimes our funders wonder why money goes to these things, but these small things are important.”
The Misaun Lepra team has worked hard to establish OPDs and OPLs in Timor-Leste who will be resilient. They started with the an OPD called Raes Hadomi Timor Oan (RHTO) and the Disability Association of Timor-Leste (ADTL), before moving on to the CBR (Community-Based Rehabilitation) Network, an OPD that grew out of a Misaun Lepra project since 2011.
The CBR Network is led by Norberta and supports persons with disability and persons affected by leprosy. They started small, with funding from Misaun Lepra’s initial project funds. These funds helped to establish the CBR Network for independence. At first, their office space was within the Misaun Lepra offices, until they had enough resources to establish their own offices.
“Norberta is a great success story. We offered her some support and mentoring and aided with establishing the CBR Network, but now she has become a superstar in Timor-Leste; in our world, everyone knows who she is. The government’s Gender and Equity Team use her as an example of women’s leadership in Timor-Leste and her organisation successfully bids for funding from UN Women. Norberta is invited to events across the country and internationally.”
Misaun Lepra have also supported the establishment of the OPL that Luisa and Ivonia lead: Asociasaun Transforma Lepra Timor Leste (ATLETIL). The Misaun Lepra team have supported Luisa and Ivonia with office space and equipment, training, internships, and mentoring. All of this has helped to establish a strong, independent association. However, funding has been a challenge.
“Money is the biggest challenge in this work. These organisations will not be able to bid for funding until they can show donors that they are well-established and resilient. But how do we get them to that point without funding? We have tried to show our own funders that investing in Luisa and Ivonia’s association will bring long-term rewards, but project cycles and funding cycles are often short term. Once initial project funds have run out, we have a challenge to convince funders to continue investing in building a strong OPL. Thankfully, the CBR Network and ATLETIL are becoming independent, resilient organisations.”
“People say that men lead with logic and women lead with emotion. But I lead with all my senses. When Norberta, Luisa, and Ivonia lead like this, I have seen that people want to follow them.”
Back in 2022, Nona saw an opportunity to build confidence and knowledge among her leaders. She arranged for Norberta and Luisa to travel to Hyderabad, India for the Global Forum of Persons Affected by Leprosy and the International Leprosy Congress. They took part in a week’s worth of meetings and conference events with people from across the world.
Less than a year later, Nona and Ivonia travelled together to New York to attend the UN’s conference on the Convention on the Rights of State Parties. Ivonia was the co-chair of a roundtable discussion on reaching under-represented groups of persons with disability. Her speech was raw and impassioned and received a large ovation from the delegates in the UN Headquarters.
“The overseas travel for these three women has helped them become known as activist women with disability in Timor-Leste. When they go to introduce themselves to organisations and institutions, it is easier to get attention and this gives them confidence.”
For Nona, confidence is crucial in developing these leaders, “It’s a slow process, because you have to build confidence, knowledge, and skills. But it is worth it. Because they have experienced self-stigma and discrimination themselves, these women make more powerful statements and their influence is greater. They show people where they were and how far they have come – it attracts people when they speak with their hearts instead of only their logic.
“In my experience, you have to be careful to build confidence instead of dependence. In our society, when you show a woman with disabilities trust and you have confidence in them, you become a rare person for them. It is easy for them to become too dependent on you, always wanting your insights and support. We want them to have the confidence to stand on their own without feeling that we are turning them away.”
“As young women affected by leprosy, their disability can be unseen and people don’t understand the challenges they have faced.”
With resilient organisations and confidence, Norberta, Luisa, and Ivonia have been working to gain greater inclusion within wider civil society. They have become involved in Timor-Leste’s umbrella organisation of persons with disabilities, but it took a bit more work to find space within women’s groups.
The Misaun Lepra team worked with the women’s groups in Timor-Leste to get them to focus more on women with disability, because they were often excluded. They started by talking about the values of inclusion and from there, the step to better include women with disability and women affected by leprosy was a logical one.
The CBR Network has become well known within civil society. They have become champions within Timor-Leste’s disability network and Norberta is well known with the government, UN Women, and the US Embassy.
“No one knew her before, but now you see her on social media talking about gender-based violence through the CBR Network and people know her now. The same is true for Luisa; government ministries have started to get to know her and now they come to her for information and knowledge.”
For Nona, the biggest sign of change is that men are now willing to follow these three leaders.
“Norberta, Luisa, and Ivonia are leading organisations now and that means that there are men who are older than them, but who are happy to be led by younger women. That is powerful in Timor-Leste. It did not happen overnight; the three women had to build relationships and trust with the men, but with patience they had success. I’m really proud that men allow themselves to be led by these women.”
The journey of bringing women to positions of leadership is far from over for Nona, “I hope that we will one day see women affected by leprosy leading OPDs in Timor-Leste. I think it will be possible.
“I will also continue to advocate for education. With many people in Timor-Leste not finishing secondary school, education is very important. Without a good education, women with disability will not be able to compete.”
Next year (July 2025), the International Leprosy Congress and the Global Forum of Organisations of Persons Affected by Leprosy will be happening in Bali, just a short flight from Timor-Leste. Nona has set her sights on that opportunity.
“I want to bring my people to Bali in July. But I want there to be purpose behind this trip, I want them to present their work and to contribute to the congress and the forum. It’s another great opportunity for them to grow their networks, their experience, and their confidence. They are great leaders who are doing great things. I want their future to be even brighter.”
