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Profiles: advocates for inclusion
Pushing for progress
Profiles of advocates and activists working to make services and societies in Asia and the Pacific more inclusive for people with disabilities.
Abia Akram - Pakistan
“The recent floods are a huge disaster,” says Abia. Abia's home country of Pakistan suffered when floods in August 2022 devastated one third of the country and affected 33 million people. “Persons with disabilities are not getting access to basic services and some were unable to be evacuated because resources weren’t available.”
Abia Akram is the CEO of the National Forum of Women with Disabilities in Pakistan, and part of the Disability Task Force within the humanitarian response system. She says there are systemic barriers that they’re still facing in the emergency response. “It’s really important how you are at developing disaster risk reduction plans and linking it to the emergency response. We cannot wait for another decade to see the change.”
Abia is part of the Disability Task Force within the humanitarian response system. She says a big challenge is that the voices of organisations persons with disability are not included. “We work jointly with the organisations of persons with disabilities- then the response is more inclusive. In the recent past, women and girls with disabilities are still being left behind.”
She says there were cases where parents left them because they could not physically carry them out. Abia says washrooms are not accessible in some camps. “Many of the women with disabilities face violence from the people that are there to protect them.”
“Many of the women with disabilities face violence from the people that are there to protect them.”
-Abia Akram
She says the government is supportive and is willing to work together with organisations of persons with disabilities. “They need to know more about disability inclusion. It’s been over two decades that we’ve been pushing for this agenda, talking about disability inclusion but there are practical barriers that still exist. We need to talk about that and break that in a systematic way.”
Despite the positive engagement, she says resources are not allocated to address the needs of persons with disabilities. “There are good examples of work happening in other countries but we need to connect the dots together. With UNFPA, we’ve been working on psychosocial support for women and girls with disabilities and on gender-based violence programming.”
Abia says the emergency response context changed so they need to build more awareness with humanitarian partners. One early oversight in the response was that the initial rapid assessment didn’t include the question on persons with disability. “There’s a need to have capacity building with the humanitarian stakeholders, and persons with disabilities need to be included.”
Naomi Tai - Solomon Islands
“We want to see the effective and meaningful participation of persons with disability across all levels,” Naomi says. “We want the voices of people with disabilities to raise their voices on multiple issues across all levels.”
Naomi works works with People With Disabilities Solomon Islands and advocates for Disaster Risk Reduction to coordinate disability inclusion into the Disaster Ready Programme with partners.
“I don’t want the inclusion of persons with disability to just be ticking the box,” she says. “We want to see engagement with our actions. What are the practical changes that happened from our actions?”
“We want to see the effective and meaningful participation of persons with disability across all levels."
Naomi leads an advocacy organisation that advocates for the rights of persons with disabilities in different sectors. Solomon Islands has not ratified the Convention on the Rights of Persons with Disabilities. “Accessibility is about accessing the different services in the country, education, health services, infrastructure, services in terms of livelihood. All this contributes to how persons with disabilities can face the challenges in our lives.”
She implements training on the Washington Group Questions to help the partners get better data. “Data is very important for humanitarian actors in our partners,” she says.” It's challenging to get the data on cases of disability. The Washington Group Questions help to find the number of persons with disability.”
Naomi helps other people with disabilities understand disasters and to be better prepared so that during a disaster they know where to get information, what to do, and how to get to a safe place or evacuation centre.
Angeline Chand - Fiji
“Women and girls with disabilities are more vulnerable when it comes to disasters,” says Angeline Chand. “Accessibility to us is accessibility to the evacuation centres.”
Angeline is a Human Rights and Gender Advisor at the Pacific Disability Forum. “Often we are asked why people with disabilities don't want to evacuate to the evacuation centres. There are a lot of issues around it: in their home environment they have their family support systems there and they’re used to it. They’re thinking twice about going to a new environment. Are there washrooms that are accessible? Will my support person be able to be with me?”
Angeline says access to information is crucial “When information is given or notices are given about humanitarian situations, how is it given to people with disabilities? How does it reach people who are deaf?”
She says in the Pacific, churches and schools are used as evacuation centres and they are not always accessible. “If I had to evacuate from my house, how would I move around in a new environment? What support systems are in place? That scares me. When we talk about water, sanitation and hygiene facilities, being a woman with a disability we need our own privacy.”
Angeline acknowledges that resources are limited in the Pacific, but she says commitments like the Convention on the Rights of Persons with Disabilities have helped drive real changes with budgets. “We commit to a lot of things but it all boils down to resources, so we start to prioritise. But who does the prioritisation? There needs to be a dialogue. Often decision makers make decisions without consulting people with disabilities. That dialogue, that partnership can lead to greater enhancements.”
Angeline says the partnerships need to be nurtured before the disaster hits because often it’s an afterthought. “Now when a disaster happens everyone is taken care of. We know where people with disabilities are and what disabilities they have and what types of support they need.”
“Some people think that with persons with disabilities, one size fits all,” she says. “It doesn’t. Persons with disabilities have diverse impairments and have diverse needs as well.”
The Pacific Disability Forum is involved in doing access audits of buildings to advise building owners of what adaptations are needed. “It might be a school or church,” she says. “We look at how it needs to be adapted so it can be suitable to everyone in the community.”
She says it’s important to strengthen shelters so people can stay in their own community. “I don’t want to be leaving my community where I’ve been brought up since childhood and having to go somewhere else. It’s very important that we talk about what adaptation is needed. When we talk about water, sanitation and hygiene facilities- How far are they? How accessible? Can a person with a wheelchair get there? How high are the taps? All of this needs to be consulted.”
Dignity Kit Adaptations
Through support from the Australian Government, UNFPA, International Planned Parenthood Federation, and the Pacific Disability Forum conducted consultations with women with disabilities and asked what needs to be adapted in the Dignity Kits which contain underwear, basic clothing, sanitary napkins, toothbrushes, toothpaste, soap and laundry powder, as well as information on the services that are available and how to access them. “Things that women with disabilities came up with, no one had even thought about,” she says. “One woman from the Solomon Islands had no hand control and there was a torch in there that you had to press hard on. She said, ''This is no good for me, this needs to be adapted.”
Angeline says all these different adaptations need to be made and she’s proud that UNFPA has taken the advice. “It's now being rolled out. We're getting great impressions from users that it’s beneficial to their needs and meets their requirements,” she says.
“When we talk about adaptation people say it’s too expensive, that's the first thing,” Angeline explains. “We say, ‘Let’s look at the little steps that we can do’. They say okay let’s do this and let’s do the bigger things later. We do it together. We‘re the experts on disability, we have lived experience and they have their areas of expertise. So let's work together and do it progressively. That’s what the Convention on the Rights of Persons with Disabilities says: do it progressively.”
She says her goal is to empower persons with disabilities to be able to raise the issues at forums, at church meetings, at community meetings. “Let's do it in a collaborative way. Let’s support each other. Partnership is the keyword here.”
The Pacific Disability Forum is promoting the Washington Group short set questions to Pacific countries that are doing a census. The six questions are based on different functions that tell us specific needs of the disability and impairment types. “We’ve seen five countries in the Pacific use those questions and they’ve come up with detailed disability studies that make recommendations for policy changes.”
Maselina Iuta Fiso - Samoa
“My role is to advocate for the rights of people with disabilities and work with the Deaf community in Samoa to ensure that they are able to participate in all aspects of society” Maselina says. “We do a lot of work with deaf people in rural areas. We are trying to learn better ways to address the specific barriers they experience, and advocate at community and national level for the realisation of their rights as guided by the Convention on the Rights of Persons with Disabilities.”
Maselina leads advocacy campaigns with the Deaf Association of Samoa engaging stakeholders such as the Samoa Meteorological Office, the Ministry of the Prime Minister and Cabinet and the National Disaster Management Office to continue to ensure the prioritisation and voices of persons who are Deaf and hard of hearing in Samoa.
Maselina is a Founding Member and Project Officer for the Deaf Association of Samoa. During outreach activities, Maselina leads trainings and workshops throughout the inhabited islands of Samoa with deaf and hearing community members related to human rights education, disaster risk reduction and gender-based violence.
She says growing up in Samoa with a disability was extremely challenging. “Growing up, there were a lot of barriers. There was nothing. No access to sign language or education. I couldn’t understand, I couldn’t read and I couldn’t write for many years. It wasn’t until I was 13 that I first learnt sign language, and had the opportunity to read and write, but even now, I continue to work hard to improve my education.
Maselina Iuta Fiso was just a child when the tsunami hit Samoa in 2009. Being deaf, she struggled to understand how to respond.
“My friend came to me and said, ‘Come, come, come, let's run! There's a tsunami coming!’
I said ‘it’s finished, the earthquake is finished. I didn’t know why everyone was worried. When I went home, I saw my mom and dad packing and we drove to the other side of the island to Falealupo. We stayed maybe 2 nights, but nothing happened.”
“Then I saw what was happening on the other Island, in the village Laloamanu and it was so scary. My heart was just broken. A lot of people died and there was a lot of damage.”
“When I saw that I was very sad. It made me want to learn from this disaster. That time, on TV when they talked about what was happening, there was no sign language translation. I was asking my parents, please can you tell me what is happening? And they would try to explain about the tsunami. My family has always really supported me to help me understand. We must make sure everyone can understand and stay safe during a tsunami. Now if a tsunami happens we know what to do, and we'll make sure everyone is safe from the tsunami.” WATCH VIDEO
James - Kiribati
“I lost my leg in 2016,” says James. “After the examination of the doctor they found that my leg was going to be poisoned. They said to me that it’s better to cut it off.”
He says it was a hard time. “I fell down hearted,” he recalls. “Because I have five kids and I’m a police officer. I didn’t want to lose my job.”
James was lucky. “My boss allowed me to continue work, but he assigned me to be in the office.”
In addition to keeping his job, James is now the Chairperson for Te Toa Matoa, a Kiribati Organization for Persons with Disabilities in the capital of Tarawa. He says some ministries recognise the Convention on the Rights of Persons with Disabilities and the Kiribati Organization for Persons with Disabilities has a program to advocate for the rights of persons with disabilities in Kiribati. “We educate so that people with disabilities can be involved in everything, especially on accessibility.”
He says people with disabilities are left behind and they're not included in the decision making. “We do a lot of awareness raising, we work together with the government on how we can improve so people with disabilities are not left behind. We want them to be involved in the decisions.”
Te Toa Matoa runs a centre where people with disabilities can gather for activities. It has a newly opened health clinic staffed by nurses that can handle the diverse needs of people with disabilities. “This place brings joy to people with disabilities,” he says. “When they stay home they can’t participate. People go out to church and they leave them behind. Here we all belong, here we are a family.”
Pratima Gurung - Nepal
“When we have disasters one after another, for groups like us that have multiple marginalised identities, the risks and vulnerabilities that we have are intensified and compounded,” says Pratima
Pratima Gurung leads the National Indigenous Disabled Women Association Nepal (NIDWAN) and is a faculty member at Padma Kanya College in Kathmandu. She says indigenous women with disabilities are not able to express their needs to authorities, particularly during disasters, because the process itself is difficult. “There are different layers of identities and needs. If there’s a person who needs a wheelchair but even to ask for a wheelchair they have to speak a language that is communicable. When it comes down to the grassroots community this is what happens; this is where we find huge barriers related to access to information and access to the process.”
Pratima looks at how many kinds of interventions are required at a response, recovery, rehabilitation, reconstruction and relief levels. “Marginalised groups need to be included in all of those stages.”
She says sometimes that relief is not based on the needs and the priorities that we have at the grassroots level. “This is what we experienced during the pandemic and the earthquake. We are positioning our advocacy so that we need to be included in all five of these areas whenever there’s any kind of disaster.”
Pratima sees stakeholders coming together in closer collaboration, with interventions and best practices at the community level. “Bringing those stories, documenting those narratives and sharing to different parts of the world, community-level standards for reaching the most vulnerable people would be a part of collaboration. The pandemic has taught us that no matter what vulnerabilities we have, all the small things matter a lot.”
"People with disabilities have become active agents. They have become contributors.”
-Pratima Gurung
She says Nepal is at the early stages of inclusion because few women with disabilities have access to information. “These advocates are on the front line pushing for their rights, their needs and their priorities. People with disabilities have become active agents. They have become contributors.”
She says we need to have more champions of persons with disabilities to come to the table. “They can focus not only on the challenges, but also equally provide solutions of what needs to be done and find collaborative approaches.”
Pratima says disaggregated data is crucial not only for people with disabilities but for other groups. “There’s a clear recommendation to the government of Nepal provided by the Committee on the Elimination of Discrimination against Women recommendations of 2018 and that outlines how to use the Washington Group questions.”
She says every government in every country is still learning how they become disability inclusive. “We know that we have a crucial role to collaborate with our government. We need to know what are the decisions that are being made on our behalf because that has impacts in our day to day lives.”
Eddie Babanisi - Solomon Islands
“This public solicitor’s office needs more sensitisation for people with disabilities,” says Eddie. He’s an intern at the public solicitor’s office and works with the Ministry of Health. He recently hosted a workshop on how to work with people with disabilities, particularly blind people. “How do you guide a person with a disability? How to approach the workplace? We talked about accessibility within the workplace and one thing that I highlighted was the solicitor's office is upstairs. People with physical disabilities cannot get up. That is what is happening from my perspective as a person with a disability.”
Eddie works with the family protection unit to conduct legal support, interview clients and draft statements on divorce and child support matters.
Nelly Caleb - Vanuatu
“I need to stand up for other women and for myself and that’s what I did,” says Nelly Caleb. She is the National Coordinator for the Vanuatu Disability Promotion and Advocacy Association. “We've been promoting disability inclusion a lot in our society. We are doing awareness and we can see the barriers going down.”
A study by the Vanuatu Disability Promotion and Advocacy Association found people are left out in the education system and there is not even a preschool for those who are blind and those with learning disabilities. “It's hard for children with disabilities to go to school. Most of them have to quit, come home and stay with their parents.”
“We've been promoting disability inclusion a lot in our society. We are doing awareness and we can see the barriers going down.”
-Nelly Caleb
A review of 300 laws in Vanuatu found that over 100 needed to be reviewed to make sure they comply with the Convention on the Rights of Persons with Disabilities. “We make sure that persons with disabilities are part of the first response. But we had a volcanic eruption in the south last year. We could see that people with disabilities are still being left out. Even though the government's policy on climate change and disaster risk reduction is inclusive, it’s only on paper.”
Nelly trains partners on collecting data and how to use the Washington Group Questions. “It’s easy to find now how many people are in wheelchairs in that area. If buildings are not disability accessible, it is an issue for everybody. You’re growing older, you're going have a walking stick, you're going to use the ramp. Your daughter-in-law might be having a baby and might need that ramp access because it’s easier. Inclusion benefits everyone.”
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Respect, recognise, engage: Making life-saving information accessible for persons with disabilities UNFPA Asia-Pacific has created this first-of-its-kind video at UNFPA, seeking to make the film truly accessible to persons with a range of disabilities, including visual impairment. As such, the video treatment may be new for many viewers - the impact disconcerting initially. But the more you watch, the more you realise how crucial accessibility - something the majority of us take for granted - is to millions of persons living with disabilities the world over. WATCH THE VIDEO
REPORT: Are persons with disabilities included in the effort to leave no-one behind?
Mapping disability data in development in Asia and the Pacific
Learn more
We Decide: Including and empowering persons with disabilities
UNFPA Asia Pacific | Disability Data
IASC Guidelines, Inclusion of Persons with Disabilities in Humanitarian Action, 2019
The Impact of COVID-19 on Women and Girls with Disabilities
COVID-19 and Persons with Disabilities: Key Messages
Standing up for the rights and choices of people with disabilities
Committee on the Rights of Persons with Disabilities
United Nations Disability Inclusion Strategy
The Women's International Network for Disaster Risk Reduction
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