The report, released Thursday at the United Nations in New York, found that the problems are worsened by poverty and dozens of other variables, including stigma, architectural barriers, lack of legal protection, the cost of devices and assistance, and the lack of knowledge by others (especially health professionals) about how to interact with disabled people.
“The message is that we cannot continue to discriminate against or ignore the needs of such a large proportion of the world’s population,” said Etienne Krug, the Belgian physician and epidemiologist at WHO who led the study.
The document, 350 pages long, is the first by WHO analyzing data about disability around the world and is WHO’s first major health report to be available in Braille, Krug said. There is also a version for people with mental retardation consisting largely of pictures and captions.
The project took four years and involved 360 researchers around the world, many of them disabled. Together, they sought out and analyzed hundreds of censuses, epidemiological surveys and scientific articles but did not do any primary research of their own.
The problem of disability is likely to get substantially worse unless governments acknowledge it, they say. Two huge trends are contributing to its growth.
One is wealth.
In low- and middle-income countries, 66.5 percent of all years lived with disability are the consequence of “non-communicable diseases,” including heart disease, stroke, mental illness, emphysema and cancer. That number is seven times the percentage of disabilities attributable to infectious diseases — measles, whooping cough, pneumonia, meningitis, AIDS.
But as incomes rise in once-poor countries, and hundreds of millions of people start working in offices, eating hamburgers, smoking, having no unavoidable physical exertion and getting fat, the spectrum of disability includes impairments caused by being overweight, diabetes, arthritis, inactivity, atherosclerosis and chronic lung disease.
The other huge trend is age.
Everywhere, disability is associated with growing older. Disability is especially high in people in their 80s, the “age cohort” growing fastest in the world.
The subject is of interest to the World Bank, which provides loans and grants to many of the world’s poorer countries. It views educational “mainstreaming” laws, curb cuts, wheelchair lifts on buses and prohibitions against discrimination in hiring as relatively easy measures in the effort to make societies fairer and more prosperous.
“Disability impairs the ability of people to function as workers, as mothers and as fathers,” said Tamar Manuelyan Atinc, the World Bank’s vice president for human development.
The WHO, headquartered in Geneva, regularly shoulders the responsibility of gathering the data from around the globe for particular health problems. This project was particularly difficult. Researchers not only faced the common problem of uncovering little data in the places where the problem was likely to be greatest — namely, low-income countries in Africa and Asia — but they also had to define “disability,” which is a fluid concept that depends not only on the physiological state of an individual but the barriers to activity.
“The big message here is that people are facing barriers, and that is what the main problem is,” Krug said. “Disability is an interaction between the impairment and the barriers put up by society and the environment.”
There has been considerable improvement in many places in recent years, including in many poor regions.
For example, a recent three-year project in Allahabad, India, aimed at mainstreaming children who were disabled successfully enrolled many in school and increased their vaccination rates, according to the report. In a poor district of Karnataka, India, a government project to build toilets for everyone was aided by a local organization, Mobility India, and a Swiss charity in building 50 toilets accessible to people with disabilities. They no longer have to crawl long distances or be carried to a place where they can defecate.
The successful assault on various diseases has also helped reduce disability.
Mali, Niger and Burkina Faso have had a substantial reduction in Neisseria meningitidis — a cause of deafness and permanent brain damage in children in the 25-country “meningitis belt” of Africa — following introduction of a vaccine against the infection. In Uganda, the Sustainable Clubfoot Care Project is helping provide orthotics and train health-care workers. In Brazil, public transport systems are adopting “universal design” features to allow access to riders with disabilities.
The report provides a laundry list of suggestions to countries about how to recognize the needs of the disabled, accommodate them and, above all, include them in policymaking. There is no single piece of advice stated as most important, although in interviews the need to mainstream disabled children in schools appears to be at the top of the list.
It’s an issue that matters to Judy Heumann, a 63-year-old specialist on disability rights who works for the State Department. She is in New York to help launch the WHO report.
“I’ve seen many changes in our country,” she said. “We’ve gone from a country where children with disabilities didn’t have a right to go to school and where denying a person a job based on their disability wasn’t illegal.”
She contracted polio in 1949. She has a severe case, with paralysis of her legs and now limited use of her arms, too. In 1952, when she was old enough for kindergarten, her mother pushed her wheelchair to the public school in Brooklyn, pulled it up the outside stairs and presented her daughter for enrollment. She was prepared to do this every day.
Heumann was turned away. Instead, she was given 2 ½ hours of home tutoring a week. In fourth grade, she was finally admitted to school.