FONHARE, Haiti-based NGO working to ensure the inclusion of persons with disabilities
Central government Office for the Integration of the Handicapped (BSEIPH)
Community-based organisations of disabled persons Local authorities, including mayors
Action led by disabled people in the community – including to the non-disabled - aids their long-term inclusion
Integrated approach addressing shelter, food, hygiene, medical and livelihood needs
Support to international responders to ensure inclusion of the disabled in in their action
Recognition that vulnerability is a result of existing economic and social relations that can be challenged through preparedness
FONHARE (Fondation Haitienne de Rehabilitation) was founded in Ouanaminthe, in north-east Haiti, in 2011 by Dr Ivens Louius with the express purpose of integrating persons with disabilities into society. Dr Ivens realised that the disabled needed both a medical approach that maximized their ability to function and advocacy that gave them a position in society. Dr Ivens began FONHARE from a tiny room, with just enough space for a bed on which to examine his patients. Initially FONHARE was funded solely by the goodwill of friends. By donating time and money despite living in extreme poverty themselves they gave disabled people hope of receiving treatment for their conditions. In the years since, FONHARE has expanded and now offers a comprehensive range of rehabilitation services.
Dr Ivens saw however that disability itself was only a part of the problem. Attitudes towards disability were dominated by ignorance and suspicion leading to persons with disabilities being seen as having little value. The disabled were seen as a burden, often left at home or abandoned, without contact with the outside world. This drove the second element of FONHARE’s mission, that of inclusion. Ensuring that persons with disabilities claim their rights and are treated as full citizens. This has driven programmes of increasing access, both physical and otherwise, to public and private institutions. FONHARE’s current programmes include the integration of disabled students into schools, an independent living programme which enables people who are wheelchair-bound to become independent in their home and community, and a community access programme of ramp building to ensure wheelchair access throughout the region.
When Hurricane Irma struck the region in 2017, FONHARE was able to demonstrate how a humanitarian response could actually be led by persons with disabilities. In so doing, FONHARE have shown the value of an inclusive and localised humanitarian response.
When hurricane Irma hit north-east Haiti on September 7th 2017 many people's lives were changed. Rochenel, a leader of Malfety's disabled persons’ organisation, reported that “A lot of people saw their homes flooded, with significant damage here in Malfety. Many people became victims, many lost animals and some lost roofs. Some had their houses flooded and everything was destroyed [...] Everyone was affected, not just the disabled.” FONHARE had been working before Irma made landfall, targeting areas likely to be hit. Their team sought to sensitise both NGOs and populations, ensuring that any early warning system, as well as evacuation and response plans, were inclusive of those with disabilities. For example, any messages delivered by megaphone needed to be provided to the deaf in an alternative way. When Irma arrived, the exclusivity of the response was clearly visible: people with disabilities were often stuck in their homes, trapped by water and largely ignored by NGOs. FONHARE advocated for evacuation to prioritise those with limited mobility.
FONHARE’s response to Irma was led by local community-based organisations (CBOs) of disabled people. FONHARE asked CBOs to visit disabled and non-disabled people among the local affected population and list those with the greatest needs.
Francois Cleon from the Terrier Rouge CBO takes up the story: “The day after Irma, Dr Ivens called and asked us how things were. He told us to look for affected places and especially persons with disabilities, and from there we went on to work with victims, including both disabled and non-disabled people. Dr Ivens told us to write down the names of those in need, those hit hardest. He then brought supplies and we made a distribution, emphasising the poorest.” A beneficiary from Malfety praised this approach: “FONHARE came to support us, it was a big pleasure. We had our special brother Monsieur Francois who helped FONHARE assist us to repair the house, and gave food and livelihood support, like goats and other stuff.” The fact that the assessors came from the communities they sought to serve meant they were trusted in a way that outsiders never could be. FONHARE's distributions targeted the four most badly affected communes in several phases. In the week after Irma hit, food and hygiene kits were distributed. Louis Jacques Etienne, the mayor of Fort Liberté, told how he travelled “with the [CBO] team, including with victims door to door. We wrote down the names of the most vulnerable and then came to get supplies to distribute. FONHARE stamped a card with their logo and we gave this to each beneficiary, with their name written on it. When we made the distribution, I posted police around for security and every family with a card received assistance.”
In the second week after the disaster, a mobile clinic provided treatment and disease prevention. In particular, the mobile clinic addressed the epidemic of infection caused by people walking through and sometimes living in water contaminated by flooded toilets. The mobile clinic took a team of 32 doctors, nurses, pharmacists and supporting equipment to the most affected communities. A longer-term programme of support prioritised home repairs, notably zinc for roofs that had been lost to high winds. Those affected would fix their own homes, with FONHARE supporting them financially. This ensured local procurement of materials, further supporting the community.
The final piece of the intervention was an effort to support the livelihood of the most vulnerable. Thanks to income generation activities FONHARE managed to support small businesses and providing goats, since many animals had been lost to rising water. This targeted persons with disabilities and the vulnerable without disabilities in almost equal numbers. Thanks to this support, FONHARE demonstrated that the disabled could be self-reliant and provide for their families, thereby advancing their inclusion. Augustin Whisland from Terrier Rouge said that: “Despite my handicap, I am someone responsible for myself, my family and my education. I can pay for everything thanks to the farm animals: if I am alive, it is thanks to FONHARE.”
The benefits of local action were clear to Dr. Ivens: “We know the context, we know the situation of the people […] We have a good relationship with the people. Other agencies doing distributions had problems with injuries and theft.” Francois Cleon added: “When other organisations were doing distributions people who were not affected benefitted, and there was a lot of fighting and pushing, and so people with disabilities couldn’t access assistance. We didn’t have such problems because of our proximity to the people and because we have the confidence of the community.”
FONHARE’s understanding of partnership is that local actors must set the agenda while others facilitate them. This applies both to how FONHARE works with grassroots CBOs and how they would like donors to work with them. As a result, FONHARE’s most important partnership is with CBOs of people with disabilities. Since they are close to their communities, they are able to support the actions of others while understanding and articulating the needs of the disabled. All of FONHARE’s work, and in particular emergency response, is coordinated with local authorities. Most notably the mayors who lead at the level of the commune and civil protection who have formal responsibility for disaster response. FONHARE has also forged a strong partnership with the central government's Office for the Integration of the Handicapped (BSEIPH). Since BSEIPH has no office in the north-east, FONHARE seeks to reinforce its strong national advocacy, while BSEIPH supports FONHARE with links to donors.
Since the response to Irma, FONHARE has played an important role in supporting international agencies leading emergency responses in Haiti to be inclusive. Despite a global rhetoric of inclusion, many of the agencies operating in Haiti were quite exclusive. In particular, the most vulnerable struggled to access distributions. FONHARE and its local partners were able to evaluate such agencies in terms of how inclusive they were. They ensured that the most vulnerable were prioritised and connected with local disabled people’s organisations.
Most of FONHARE’s funding comes from a network of individual supporters in Haiti and abroad, including Haitian business. FONHARE's most notable contribution came from a telecoms company who have sponsored physical access activities. Such donors give money with few constraints, allowing FONHARE’s vision to drive activities. However, FONHARE is concerned because current donors cannot support the organisation to the extent it would like. The initial Irma response was supported by FONHARE’s usual local sources, while German based donor CBM supported the larger response. CBM grasped the needs of emergency response, and whilst funds only arrived a week after Irma hit, they had preapproved spending by FONHARE, so the response was not delayed. Both the initial response and the longer-term project of livelihood and support was designed by FONHARE, with CBM contributing technically but not seeking to steer plans. Dr Ivens sees this as a good example of how international donors should work to ensure localisation. Rather than imposing their own style, they should support the implementation of the agendas of local organisations. He also emphasises that to ensure effective localisation, local organisations must be prepared to decline financial support that does not resonate with their own vision.
Dr Ivens believes that a local approach is a necessary condition for an inclusive response to disaster. However it may not be enough. In the aftermath of Irma, the negative attitudes toward people with disabilities were visible to FONHARE but may not be apparent to an external actor. “We know the attitudes, the culture, the obstacles to inclusion,” he says. People with disabilities led FONHARE's response to Irma and this demonstrated that they could play a role in addressing the community’s challenges. Dr Ivens explained: “An inclusive localised action seeks to give value to people with disabilities, by giving them a leading role in the action with the community. The community have seen persons with disabilities not as a problem but as part of the solution.” One impact was that non-disabled persons asked to join disabled persons’ organisations, demonstrating the increasing acceptance driven by the intervention. Celie Sylvestre, a disabled woman who received support to open a small shop, explained: “I am now useful to my community and they do not see me as a burden, but rather as a person useful to the development of society.” This social change was apparent in what people with disabilities reported: “Things have changed. The community started to see that we are not just waiting for help but can reach out and help others in different ways.” As such, an emergency response based on inclusion not only addresses short-term needs, but drives broader, deeper social change that increases the inclusion of persons with disabilities.
While the impact of an emergency response is often measured quantitatively, in terms of what and how much has been distributed, Dr Ivens emphasises that true effectiveness must be measured in terms of more fundamental outcomes. Are people still in poverty after intervention? Has their position in society changed? Are they better prepared for another disaster? This requires a subjective measure of effectiveness to ensure that long-term change is delivered after a disaster.
FONHARE has demonstrated an approach to humanitarian action that prioritises the agency of the most vulnerable. While FONHARE focuses on persons with disabilities, this approach can be generalised as a route to address both the causes and consequences of vulnerability. By driving change that increases solidarity and support from the broader community as well as individual resilience. As such, inclusive humanitarian responses must recognise that vulnerability to natural disaster is a direct result of existing economic and social relations that can be challenged through preparedness. Dr Ivens explains: “If I come and I just bring food and urgent items, I will just relieve their hunger for a short time, but they are not prepared to overcome the next hurricane […] One must prepare them economically, so that their house will be stronger, and they will have more personal funding to overcome and be prepared for the next disaster.”
If you want to learn more about FONHARE’s work and support, contact fonhare.org@gmail / email@example.com or (509) 3444-1055 / (509) 3228-1776.
Produced with the support of Bill and Melinda Gates Foundation