Haitian Leader — Changing Attitudes on Disability

Gerald Oriol, Jr., Haiti’s Secretary of State for the Integration of Persons with Disabilities, has no shortage of education: He holds degrees from the University of Florida and Harvard. He also possesses a wealth of public, private and nonprofit experience. Still, President Michel Martelly’s decision to appoint Oriol, who has spinal muscular atrophy, represents a paradigm shift for a nation that has largely ignored its disabled population.

Since the devastating earthquake that struck Haiti in 2010, the nation continues to face a litany of challenges, including reconstruction, unemployment, and cholera outbreaks. Yet Oriol is determined to keep disability rights front and center during the nation’s recovery.

In 2011, as Texas Christian University’s international advisor, I spent a week with Oriol in Port-au-Prince, the country’s capital, visiting the sites of his nonprofit, Fondation J’Aime Haiti [I Love Haiti Foundation]. Later, when Oriol was appointed Secretary, I helped him identify partners for his agency, reviewed grant proposals, and performed other supportive tasks.

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On the one year anniversary of Oriol’s appointment, I returned to Port-au-Prince for a visit. What follows is a diary of my trip:

Friday, October 19, 2012

Our morning commute to the office was a series of fits and starts as Yovens, Oriol’s driver, skillfully weaved our SUV—fully loaded with government plates, tinted windows and a blaring siren—through the flow of pedestrians, tap-taps and other vehicles that animated the narrow, congested arteries of Port-au-Prince.

With the radio tuned to a talk show, Oriol divided his attention between callers commenting on current events, and people milling by on the streets. He sought to glean some sense of the day’s political climate in a nation with 40 percent unemployment, rising food costs, and a Gross Domestic Product of $1,200 per capita. Periodically, Yovens’ long arm reached over and removed a small cellphone from Oriol’s shirt pocket and placed it in the Secretary’s right hand so he could talk to a government colleague, friend, or representative from a Western NGO. Oriol effortlessly switched from French to Creole to English as needed.

Forty-five minutes later, Yovens beeped the horn at the iron gates of the office, which is referred to locally as BSEIPH, where an armed guard let us pass through and then quickly closed the gate behind us. The Haitian government rented this property because the office it leased in Canapé Vert was destroyed in the 2010 earthquake that killed more than 200,000, injured tens of thousands, and left roughly 1.5 million homeless. The temblor essentially disabled the Haitian government by decimating its downtown offices and claiming the lives of an estimated 20 to 25 percent of the country’s civil servants.

Parked inside the compound, Yovens lifted Oriol from the SUV’s passenger seat, settled him into his wheelchair, and helped him roll into the building. After introducing me to a handful of staff, Oriol provided an overview of the bureau, which included a reception area, conference room and work areas for approximately 30 employees. He recently approved construction of a small television studio within the facility so his communications department could create educational videos, public service announcements, and news segments—a smart, long-term move that should ultimately free BSEIPH from its financial dependence on NGOs for awareness campaigns.

A year had passed since my previous visit to Haiti, so Oriol sent me back out with Yovens to spend the next five hours in the capital—on foot and by car—gathering information for a comprehensive assessment of Port-au-Prince.

Nearly all the piles of rubble in the capital, which once impeded traffic and street vending, were gone. New construction and renovation were cropping up throughout the city, and the Neg Mawon statue, which last year had blue refugee tents from the People’s Republic of China tethered to it, had been restored and once again represented a dignified monument to Haiti’s freedom. Even in Champs de Mars—the verdant park beside the presidential palace—school children now played where quake displaced people once sought refuge.

At the end of day one, the Secretary asked for my opinion of Haiti’s recovery efforts. Despite some noticeable improvements, unemployment remained high. “It’s hard to tell someone living in a tent that 5.5 percent GDP growth is pretty good,” I responded, a reference to the 2011 statistic from the World Bank.

He nodded and replied, “The people are running out of patience and I can certainly understand that, but the truth is Haiti has made some tangible progress over the past year.” He was right. According to the United Nation’s Economic Commission for Latin America and the Caribbean (UNECLAC), Haiti’s GDP grew faster than that of any other Caribbean nation in 2011, and in December of 2012, the International Monetary Fund projected Haiti’s GDP, which increased by 2.5 percent in 2012, would increase by 6 percent to 7 percent in 2013. Despite the progress, more than 350,000 capital residents remained in temporary shelters, and countrywide protests against the Martelly administration appeared to be increasing. The fate of the Haitian government was hanging in the balance: Could it continue to develop the economy and resolve lingering problems at a pace that satisfied its massive numbers of unemployed and displaced citizens?

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Saturday, October 20

Even before his appointment to Martelly’s cabinet, Oriol advanced the conversation on disability through his nonprofit, Fondation J’Aime Haiti. He partnered with the United Nations between 2007 and 2008 on a national awareness campaign that allowed the young activist to travel to remote regions of the country in large, UN transport helicopters. For the disabled in these communities, seeing Oriol emerge from the helicopter in his wheelchair was a reassuring surprise. In 2010, his organization started a business development program in Port-au-Prince, Cap Haitien, Hinche, Jacmel, Jeremie and Les Cayes, to train people with disabilities to work in sales for what was the nation’s second largest cellphone carrier at the time. Participants also received small grants to start a secondary business, usually selling refreshments along with the cellphone minutes.

Of the approximately 150 people in the program outside of Port-au-Prince, only one had funding removed for poor performance, while sales figures by vendors with disabilities often matched those of individuals without disabilities within the same markets. In his official capacity as Secretary, Oriol hoped to revive and expand the vendor program for disabled citizens with Digicel, the nation’s largest carrier.

On weekends when Oriol was not traveling as the head of BSEIPH, he caught up with his non-profit work. On this particular Saturday morning we visited Sainte Marie, a small community in southern Port-au-Prince that was badly damaged during the quake.

There, J’Aime Haiti and the Shree Prajapati Association, a British nonprofit, constructed a 10 computer cyber center, which served approximately 250 youths on a rotating schedule. Throughout the morning, Oriol wrote checks for some bills owed on the facility. He also met with parents of students who received scholarships to attend some of the areas elite elementary and high schools. The program, L’Espoir par l’Education [Hope Through Education], which J’Aime Haiti managed, was sponsored by Sporting Chance Foundation, the nonprofit of former MLS soccer star, Seth Stammler.

That evening on the drive home from Sainte Marie, I leaned forward from the back seat and asked Oriol if the earthquake was a turning point for people with disabilities in Haiti. He pondered the question for a few moments then carefully responded: “The earthquake helped raise awareness on disability in Haiti… It sparked greater interest from the international community and from agencies working in Haiti, to work in the field of disability. Perhaps it helped change the mentality in the country as well, and now, more and more, disability is viewed as a social challenge, whereas in the past it was seen more as a medical condition.”

Like so many in Port-au-Prince, Oriol lost friends in the quake. On the afternoon of January 12, 2010, he attended a meeting on disability at UN headquarters inside the Christopher Hotel. He left the meeting late that afternoon, and when the ground trembled at 5 pm, the hotel was among the thousands of buildings that collapsed instantly. More than 100 UN personnel lost their lives, including some who were in the meeting room Oriol had just left. In a few tragic minutes, the number of people with disabilities in Haiti increased by thousands.

Over the next several days, Oriol and his driver traversed the debris filled streets of Port-au-Prince in a pickup truck, delivering survivors to medical facilities and collecting bodies of the dead. From that experience, Oriol recognized the impact another quake could have on Haiti’s over populated and vulnerable capital. For that reason, Oriol’s agency partnered with Handicap International and the Organization of American States (OAS) in Fall 2012, on a training workshop for emergency responders and relief agencies to address the special needs of persons with disabilities during a natural disaster.

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Monday, October 22

At 9 am, Oriol’s office buzzed with activity. BSEIPH and a Brazilian delegation were presenting a five day disability training program for 30 Haitians from throughout the country who worked for NGOs. Earlier in the year, the BSEIPH Brazilian team conducted a similar training for a group of Haiti’s civil servants. The Brazilian government also collaborated with the Ministry of Public Health on construction of an Institute for Rehabilitation in Bon Repos, about 45 minutes north of the capital, which will provide much needed services to persons with disabilities, as well as training for professionals working in the field of rehabilitation. BSEIPH’s partnership with the Brazilian government reflected a larger trend of the Haitian government expanding its foreign relations with states in the Caribbean, Latin America and even the African Union.

On Monday afternoon—even though he was just in the other room—Oriol and I traded emails about an official census that The Haitian Institute for Statistics and Information (IHSI) planned to conduct in 2013. It was a big deal for Oriol’s agency, which relied on extrapolations for its disability figures. Those estimates placed Haiti’s disabled population at 900,000, or approximately 10 percent. The general consensus was that the estimated figure might be low, as disability rates in developed countries typically fall in the 15-20 percent range.

The upcoming census offered a unique opportunity to capture accurate data on disability, but only if designed properly. To ensure that it was, Oriol enlisted the services of Sophie Mitra, PhD a Fordham University professor from New York who specializes in applied microeconomics; she’s also worked with disabled communities in South Africa, India and Vietnam.

The Fordham economist uncovered a potential flaw with the census as drafted because its current disability oriented questions were geared towards impairment rather than factors that limit activity. They measured blindness, deafness, mental retardation and paralysis, while more accurate measures would “focus on limitations in the activities of daily life such as bathing, dressing…going outside the home, work or housework for working age persons, and school or play for children,” Mitra said.

Most developed nations followed the social model of disability, which used activity limitations measures, while Haiti’s draft census questions were a product of the antiquated medical model that only measured obvious impairments. Oriol planned to present these observations to his IHSI colleagues in an upcoming meeting.

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Tuesday, October 23

I visited Saint Vincent’s Center for Handicapped Children—or what remained of it. During the quake, seven children and three staff died at the primary campus in downtown Port-au-Prince, and the facility sustained heavy damage. The center was temporarily relocated to a dormitory two blocks away. Though crowded, it continues to provide much needed services to approximately 300 young people with disabilities.

Oriol hoped to build a handful of these kinds of centers throughout the country, and Saint Vincent’s was the closest thing he had to a working model. The Secretary recognized there was a long-term risk if his agency assumed such services as educating and housing children with disabilities: it potentially released his government colleagues from their obligation to provide these services to all the country’s citizens as required by Haiti’s new law on disability. As such, Oriol considered a modified design for the centers that focused on vocational training for adults with disabilities, and adaptation training for students with disabilities about to integrate into regular schools. The centers could also serve as repositories for prosthetics, wheelchairs and crutches while offering some basic repairs of special equipment. Funding would most likely dictate whether Oriol’s vision for the centers could become a reality.

Later that day, two United States Agency for International Development (USAID) representatives visited the office. For months, the United States’ primary foreign aid agency worked with BSEIPH to finalize a $900,000 award for construction costs to convert one school in each of the country’s 10 departments into a fully accessible facility. The proposal, which originated in Oriol’s office, aimed to create these schools as models for inclusion. Renovation of the 10 schools is scheduled to begin in 2013, once the Haitian Ministry of Education and USAID selected the schools to receive the upgrades. The meeting ended with the USAID reps and Oriol agreeing to meet again once the agency’s attorneys signed off on the agreement.

Oriol’s schedule as Secretary consumed most of his waking hours and left him with little time for his wife, Rachelle, and young daughter, Galia. Fortunately, Oriol’s parents and two of his five sisters live nearby. Although Gerald’s father still worked as a civil engineer and his mother as a pediatrician, Oriol’s parents spent considerable time with their granddaughter. Oriol also employed a small support staff at home that included a driver to take his daughter to and from school, and a nanny to help with cooking, cleaning and childcare.

Oriol, who already represented his country at conferences in Qatar, Ecuador and the United States, often returned home from work in darkness. This evening we again arrived late, so Yovens carried Oriol into the house to his bed, propped him up with pillows, turned on the news, and plugged in his laptop. Oriol continued to work into the night, responding to emails and talking quietly on the cellphone. Once his four-year-old daughter fell asleep beside him, Rachelle carried the young girl to her bedroom, and finally had a few minutes with her husband.

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Wednesday, October 24

The Secretary’s SUV climbed the steep hills of Petionville. If Port-au-Prince had a “wealthy” neighborhood, this was it. Before heading to the office, we stopped at the school where Oriol’s daughter attended kindergarten. The occasion was a parent teacher conference. Either to accommodate Oriol’s disability or his busy schedule as a member of the President’s cabinet, the meeting was held in the school’s parking lot: the young Haitian teacher brought a collection of crayon drawings and other papers to the passenger window for Oriol to review.

Like any proud parent, Oriol commented on a few and asked some general questions about his daughter’s progress in class. Once the impromptu parent teacher conference ended, we immediately headed back down the hill toward Nazon and our next meeting.

Later that afternoon, two representatives from a well known international Christian development organization met with the Secretary in his office. The first, a French urban planner, followed up on an idea proposed by Oriol, to create a universal design course for a local technical college. Some of the post earthquake construction already completed did not fully consider universal design principles.

Oriol understood that the rebuilding of Port-au-Prince offered the possibility of a great leap forward for Haiti’s disability movement, but only if these new structures fully considered accessibility. The Secretary wanted more data on what it would take to make the capital’s economic infrastructure available to people with disabilities, and so the urban planner intended to incorporate accessibility audits of local businesses in the design of his class. Oriol expected the course to produce future generations of Haitian engineers, designers and construction contractors, trained to create accessible structures and spaces throughout the country.

The other representative from the NGO, a young Swiss-German woman with a background in international law, pitched yet another awareness program because the NGO had some funding it needed to use up by the end of the 2012 calendar year. Oriol promised to consider her proposal and respond by email in the next several days.

Earlier that week, I videotaped Oriol discussing his thoughts on the 10,000 NGOs working in Haiti. Sitting at my temporary desk in the BSEIPH office, I reviewed the footage through my digital camera’s playback feature. The segment started with one of the Secretary’s famous habits: short bursts of forward and backward motion in his electric wheelchair, much like a standing person pacing or rocking back and forth to burn off nervous energy. Finally, Oriol settled into the frame. The severe muscle degeneration associated with spinal muscular atrophy caused his right shoulder to drop at a sharp angle, while his legs remained motionless and contorted in the wheelchair. The camera quickly zoomed in on his bearded face and wire-rimmed glasses. The Secretary possessed a brilliant mind and when he talked, people tended to listen. In response to my question, he said:

The presence of NGOs in Haiti is due to many reasons, including the incapacity of the state to provide adequate access to social services. Although as a people we are certainly grateful for the continuing support received from NGOs, the government of Haiti must step up and assume leadership. Nonprofit organizations should not intervene in the country as though in a vacuum, void of any control, regulations and coordination from public authorities. I strongly believe that the Ministry of Planning, as well as other concerned ministries, should monitor the interventions of NGOs in the country in order to ensure the services being offered are of quality, are needed, are part of the government agenda, and in the long run will gradually contribute to the reinforcement of local autonomy.

In addition to long hours at the office, Oriol sometimes met with people at home in the evening to maximize his working day. That night, he connected with two representatives from a large, well known international aid agency on the outdoor patio of his father’s home, located in the same compound as his own. The agency’s local point person on disability brought the agency’s expert on disability from New York to tour the organization’s field operations. Although the expert informed Oriol that she was only in the country to advise her own agency on the inclusion of disability within the design of its programs, she couldn’t resist offering Oriol a bit of advice: follow a two-track approach to disability awareness programs coupled with action programs.

Next, the disability expert asked about La Piste, a camp for persons displaced by the quake, which the International Federation of Red Cross set up near the Port-au-Prince airport a year after the temblor. Of the 377 households sheltered at the camp, 350 had at least one family member with a disability. According to the Red Cross, there were approximately 160 residents at La Piste who were deaf, 60 with a visual impairment, 45 with paralysis and 75 who experienced difficulty walking due to a limb amputation, malformation or permanent injury. The Red Cross established the camp with good intentions, but two years later a great many residents remained there.

“What is your agency’s plan for these people?” the visitor asked Oriol candidly. He informed her that he visited the camp and even sat down with the leaders of the community to hear their demands. The residents wanted more services and the Secretary faced a dilemma. While it was evident the community needed continual support, as camps go, La Piste was not the worst. Oriol feared that if the Haitian government and NGOs continued to incrementally improve the camp, then the residents could become further institutionalized and isolated and less likely to relocate, even when a permanent solution was offered—the worst possible outcome for someone attempting to build an inclusive society.

“Of course it’s the IOM’s [International Organization for Migration] responsibility to relocate these people,” the disability expert said. But Oriol reminded her that it was actually, first and foremost, the Haitian government’s responsibility. The two women thanked Oriol for the meeting, and then left for a dinner in Petionville with Nigel Fisher, the United Nations’ Humanitarian Coordinator.

As the two drove away in their SUV, the eastern edge of Hurricane Sandy reached Port-au-Prince. Within a few days, the winds and rain from the storm claimed 54 lives and decimated upwards of 70 percent of the nation’s agricultural crops; a devastating blow to Haiti’s fragile recovery from the quake.

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Earlier, before the onslaught of bad weather, Oriol dismissed his driver for the evening, and the two of us faced a 300-yard slog to reach his house. Despite the gusting winds and pouring rain, Oriol engaged his electric wheelchair and set off toward home. At that moment, I couldn’t help but think of several lines from Oxford economist, Paul Collier, whose book The Bottom Billion identified the “traps” that ensnared developing countries where the world’s poorest one billion people lived. According to Collier, “In every society of the bottom billion, there are people working for change, but usually they are defeated by the powerful internal forces stacked against them. We should be helping the heroes. So far, our efforts have been paltry: through inertia, ignorance and incompetence, we have stood by and watched them lose.”

As Oriol motored through the ominous storm, I wondered if I spent the week watching him lose. Within sight of his home, Oriol suddenly stopped. “What’s wrong?” I shouted, fearing the rain caused a short in his chair’s electrical system.

“My hands become numb when they get wet, and it is difficult to operate the controls,” he replied. We remained motionless in the storm until Gerald was ready to move forward again. Slowly he went, but always forward.

by James English

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