United Nations – Amidst the incomprehensible suffering that followed the 2010 earthquake in Haiti, international aid agencies rushed to provide services to the displaced and injured.
The lives of 4,000 severely wounded Haitians were saved by emergency amputations carried out by groups on the ground.
Three years later, many of the NGOs have left, and the government of Haiti, still grappling with the disaster’s aftermath, will eventually have to be the primary care provider for tens of thousands of disabled survivors who will require a lifetime of medical services.
That handoff, even if coordinated with the best of intentions, is still fraught with the complexities of disability. If emergency life-saving care is a medically and morally indisputable need, the aftermath and care of the chronically disabled is anything but well-defined, particularly in the developing world, say experts.
“If someone has lost a leg in an earthquake, they need a replacement leg every few years for the rest of their life,” said Antony Duttine, a rehabilitation advisor at Handicap International.
“There’s a constant need for rehab or prosthetic services,” he told IPS.
But once a crisis or disaster falls out of the news cycle, capturing the focus of donors can be difficult, especially given disability’s wide spectrum, ranging from loss of limbs to severe cognitive impairment.
The World Health Organisation estimates that even before the earthquake, Haiti was home to more than 800,000 people with disabilities. Their care can be overlooked when aid is earmarked for “crisis”.
Often the poorest and most marginalised in the world, the disabled are hurt more than anyone by policies that diminish or ignore the importance of basic, long-term care.
According to disability activists, the structure and language of international development goals can make the cards feel stacked against them.
In 2000, the then-189 member states of the U.N. agreed on a set of eight Millennium Development Goals (MDGs) that would guide international development through 2015. None of the eight included language regarding disability.
Shortly afterwards, groups wielding billions of dollars and mandates to save lives entered developing countries and infused their medical systems with never before seen levels of funding.
The assistance, however, went to very specific targets.
“Money from international agencies focuses on diseases like malaria and HIV/AIDS and not disability,” Orlando Javier Salgado Rubi, Honduran minister for disability affairs, told IPS.
With the cash came metrics and a pinhole focus on diseases that can be treated or prevented with the latest pharmaceuticals and vaccines. Unlike hard to ascertain measurements of broad quality of life improvements, the statistical successes of these targeted programmes are easily tracked.
The largest of the organisations involved in this push continues to be the Bill and Melinda Gates Foundation. As a result of their involvement in Africa, the pay for doctors working on HIV/AIDS grew significantly in many countries.
However, investigations have found this leads to a “brain drain” out of basic care and towards more high-profile diseases, severely undermining the viability of the existing healthcare system.
(The Bill and Melinda Gates Foundation did not respond to a request for comment.)
Basic and sustained care is of paramount importance to the disabled community. The availability of services, for instance, affects how a family is able to help their child, says Gopal Mitra, a programme specialist for children with disabilities at UNICEF.
“With lack of services, we see families hiding their disabled children because of stigma,” Mitra told IPS.
“But where there are rehabilitation services, families are much more positive and the solutions are more holistic, because at the end of the day the families want their child or adolescent family member to make the best in life,” said Mitra.
By any measure, MDG programmes have helped save lives, decrease malnutrition and put more children in schools. Yet as result of reductions in mortality, a greater number of children in the developing world are surviving illness, only to be left severely disabled.
“We are seeing more people with different kinds of impairments and disabilities,” said Duttine. “Children who might previously have died but now have survived can have brain damage and cerebral palsy or other birth impairments.”
Without parallel growth in long-term care, disabled survivors can be neglected, he says. This new responsibility can weigh on a national health system already depleted by the incentives offered by foundations.
International development guidelines are bereft of language on necessary follow-up, says Mitra.
“What about access to basic services for them? What about access to education, access to nutrition and healthcare. This is a problem.”
The attention span of the aid community is no greater than the metrics and guidelines that direct it, he says.
It was not until 2007 that the U.N. Convention on the Rights of Persons with Disability – with a few notable exceptions, including the United States – was signed and ratified.
On Sept. 23, the U.N. General Assembly was given over to a “High Level Meeting on Disability and Development.”
Thirteen years after the MDGs were first articulated, delegates promised that when the current set expires, the world’s largest minority would be included in post-2015 development goals with specific language.
“We believe that persons with disability should be held as beneficiaries in all development activities and as full participants in the development,” said Reen Kachere, Malawian minister of disability and elderly affairs.
Disability groups hailed the event. For representatives like Minister Rubi, who is blind, the convening was an important step and one he couldn’t have predicted until recently.
“When I lost my sight at 18, I never thought I would end up speaking on this issue at the U.N.,” Rubi told IPS.
Groups like Handicap International are cautiously optimistic. They know that altering the conversation on a rights issue is a painstakingly slow process.
The sluggishness is no more evident than at the United Nations itself, where in the 2013 MDG Report, among its 59 pages, disability is mentioned but once. And only two days after the high-level meeting, when the issue should have been fresh in the minds, the release of an outcome document on achieving MDGs remarkably made no mention of the issue.
For the Disabled, Progress Unearths More Questions
When U.N. Secretary-General Ban Ki-moon opened a recent high-level meeting on disability and development that promised a place for the issue in the post-2015 agenda, he cited three examples of incapacity.
All three were stories of children or adolescents, even though the World Health Organisation estimates nearly 200 million adults have a functional difficulty.
Ban’s comments illustrate what many see as a key difficulty in representing disability, both in language and in the democratic decision-making process.
Activists say the lack of attention at the international level is not simply an oversight but a product of a confused conception of disability and the unique experiences of different groups of disabled people.
The reality, they argue, is that certain classes of disabled people coincide more easily with the orientation of international guidelines for healthcare intervention and with public understanding of health.
A dominant assumption in interventions is that “we save people because when we save them they are going to have a full life and produce a lot, so society benefits,” said Bruce Jennings, director of bioethics at the Centre for Humans and Nature and a lecturer at Yale University.
Saving lives means a country will have a more reliable workforce, a guarantee of vital importance in places like Sub-Saharan Africa where populations have been ravaged by HIV/AIDS.
But a focus on mortality puts those with severe and cognitive disabilities in a precarious limbo.
“What is the rationale for spending a great deal of resources for supporting the quality of life of people with severe cognitive problems when the usual answer our society gives for spending resources in healthcare is future productivity?” Jennings told IPS.
In developing countries, where 80 percent of the world’s disabled live, social integration and sustained healthcare for them can be financially unpalatable to governments when set alongside well-subsidised international measures that focus on vaccines for polio or cutting edge treatments for AIDS.
Programmes that focus on pharmaceutical solutions are seen as easier to account for in cost-benefit terms.
But for the disabled, there is often no pill to end their distress or help overcome social barriers. For severe cases, years of rehabilitation and attention from public sector healthcare are required.
“It’s a difficult subject to bring up,” said Antony Duttine, rehabilitation advisor at Handicap International.
“It’s perceived as quite costly to provide care and support but equally it’s a moral and legal issue that you have to look into.”
As is true for many activists, those with first-hand experience of disability are often the clearest voices for progress.
“We need to include people with disabilities not just as the beneficiaries but the participants,” said MP Reen Kachere, minister of disability and elderly affairs in Malawi.
Participation is especially important in developing countries, said Kachere, where international projects have to navigate the historical question of paternalism.
“The disability advocacy community has very much been oriented towards inclusiveness and participation of individuals with impairments in the decision-making processes,” Jennings said.
A common refrain among advocates is “nothing decided for us without us.”
But participation raises the question of representation, he said.
“I’m not sure someone who has experience living in a wheelchair is a good representative for someone with cognitive impairments,” noted Jennings.
Because of how varied conditions are, differences arise in how integrated the disabled feel in society.
“It is relatively easier for a person who is blind or a person with physical disability to access services, but there is much more stigma attached to cognitive disabilities,” said Gopal Mitra, a programme specialist for children with disabilities at UNICEF.
“Disability is not a homogeneous group,” he told IPS.
The media and public perception play a role in how different conditions are treated and how the disabled view themselves.
In the United States, victims who lost limbs when bombs went off at the Apr. 15 Boston marathon have received millions in crowd-sourced medical care. At the same time, more than 50,000 U.S. diabetes patients undergo lower extremity amputations each year. Worldwide, someone loses a leg to diabetes every 30 seconds. All of them will require lifetime care.
Images of children or victims of a tragedy are easier to digest for the public than those whose descent into incapacity is slow or genetic. Physical disabilities are easier to understand than mental ones, and as a result societies are more likely to allocate money to that which they can comprehend, said Jennings.
“There is an image of the disabled as being physically limited and cognitively sound,” he said. “By having the public have a person in a wheelchair be the paradigm of disability in their mind and thinking that we deal with disability if we have wide doors and lifts on public buses is an unfortunate mistake.”
Even as organisations catch up with contemporary theory on the fluidity of gender and sexual orientation or the vastness of the disability spectrum, their efforts can still be constrained.
The problem, as disability activists see it, comes in large part from the total lack of language concerning the disabled in U.N. Millennium Development Goals (MDGs).
The result can be a self-perpetuating cycle.
“Countries are not tracking and reporting progress on children and adults with disabilities as far as MDG achievements are concerned,” said Mitra. “Countries are not connecting data. Unless you have numbers, it is difficult to plan or allocate resources.
“However, the point is 15 percent of the world’s population is people with disability. If you don’t include this 15 percent no development goals can be achieved.”
At its worst, say critics, when international aid is “solutionist”, it only looks for problems where data lies, like the drunk who searches for his keys under a streetlamp and not where he dropped them. And disability is notoriously hard to define and track.
Though an understanding of the different forms of disability may allow society to better help, the ultimate solution may be the idea of a common shared experience.
“I think the rational is solidarity, empathy, dignity, mutuality, equality and respect,” says Jennings. “It’s very hard to put a metric on those.”