Daily Archives: 21 January, 2010

Disability in Rwanda

Nobody knows how many people with disabilities there are in the world. In doing some basic research, I saw estimates ranging from 300 to 600 million. This is partly a definitional issue – it’s hard to get people to agree what “disabled” means – but mostly is because nobody has ever tried to figure it out. What is clear is that most people with disabilities live in poverty. According to the UN, two-thirds of people with moderate to severe disabilities live below the poverty line. Only two percent of people with disabilities in developing countries have access to basic services.

Take, for example, Rwanda, where poverty is both a cause and an effect of disability. It’s a gorgeous country and home to the rare mountain gorillas. It also had a massive genocide in 1994 during which an estimated 800,000 people were killed – an eighth of the population. Currently, organizations estimate that about 300,000 of the 10 million residents have disabilities. Nearly ten percent of the disabled population has had one or more limbs removed – either hacked off by machete or destroyed by mines, bombs, and bullets during the genocide. The genocide also caused resources like food to be diverted and scarce, resulting in malnutrition, which in turn has caused disability. Despite all that, the genocide is not the major cause of disability in the country – poverty, disease, accidents, lack of medical care and congenital causes are more common.

It’s also one of the poorest countries in Africa. “In 2006, 56.9% of the total population were living below the poverty line and 37.9% were extremely poor. In rural areas about 64.7% of the population were living in poverty… 28% of the rural population was food-insecure and 24% was highly vulnerable to food insecurity.” Poverty is more likely in households headed by females (which are more common after many men were killed during the genocide) and especially in households headed by individuals with HIV/AIDS.

Unfortunately, attitudes towards people with disabilities in Rwanda are not positive. From a report on disability policy in Rwanda:

‘Social exclusion’ is not a concept that is widely used in Rwanda, but disabled people are both actively and passively excluded in Rwandan society. Rwandans do not value disabled people. Disabled people are seen as objects of charity. They are underestimated and overprotected, and their potential and abilities are not recognised. Disabled children are seen as a source of shame and often hidden away. Name-calling is common. Disabled women find it difficult to get married. Disabled people suffer discrimination in employment.
Disabled family members are sometimes passed over in matters of inheritance. Land and assets are given to others who are deemed to be able to make better use of them, thus leaving the disabled person dependant on family to support them and removing the opportunity for them to lead independent lives. Negative attitudes are particularly strong towards those with severe disabilities, people with intellectual and learning disabilities, blind and deaf people.

Another organization reports that “disabled people are commonly addressed by their disability rather than their real name.”

Rwanda is making significant economic progress since the genocide, with yearly economic growth twice as high as what’s usually expected for a developing nation. It is described by Fortune Magazine as “a business-friendly nation that wants to become a model of private sector development in Africa.” The United Nations awarded Kigali, the capitol city, “the Habitat Scroll of Honour Award for many innovations in building a model, modern city symbolized by zero tolerance for plastics, improved garbage collection and a substantial reduction in crime.”

But it’s unlikely that this economic development will benefit Rwandans with disabilities. The country’s first Economic Development and Poverty Reduction Strategy Plan “had no specific reference to disability or how to include people with disabilities in the process.” While there has been significant foreign investment in the country, that impacts only the urban corporate portion of Rwanda. When nine of every ten adults are subsistence farmers in rural areas, those incoming dollars are extremely unlikely to reach the hands of most of the country’s inhabitants. The countryside isn’t appealing to private investment, especially when there’s no health stability. Any job development programs in rural areas are run by NGOs operating on donations and the products they create ($85 silk-mohair knitted scarves for Whitney Port from MTV!) are marketed based on pity for Rwandans. Those are not sustainable jobs or industries and will not create long term employment for those in rural areas. The most viable avenue for rural economic development has been through microloans through organizations such as Kiva.

Even these limited opportunities for work are unlikely to be available to people with disabilities. PWDs are unlikely to be awarded microloans to run their own businesses and are rarely employed by the NGO projects. As one research report observed:

Disabled people are generally excluded from development activities. They are often extremely poor and are continually in ‘survival mode’, so they literally cannot contribute to development activities, either materially or in terms of their time. They are largely excluded from micro-credit programmes because they lack assets as collateral and are seen as a bad risk. Disabled informants for this study said that they were often not told about development activities in their communities in the first place and when they tried to get involved, they were deliberately excluded.

It’s clear that colonization and ongoing meddling from the Western world has done nothing but contribute to and exacerbate problems like the genocide, so the solution isn’t to charge in there and tell Rwanda what policies it should have and how to run things. They were colonized by Belgium until 1960, for goodness sake. So I can’t say I know what the solution is, and the only advocacy action I can think to take is to encourage/pressure NGOs to be inclusive of PWDs when designing and implementing development projects. There’s a number of disability organizations in Rwanda and I think we’ll have to rely on them to do this work. Some lists of the organizations can be found in this report and in a project report from Handicap International.

Recommended Reading for January 21st

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post. I attempt to provide extra warnings for certain material present in articles, but your triggers/issues may vary.

The Baltimore Sun: Young, gifted and disabled
Zarifa Roberson in front of a poster-size front cover of i.d.e.a.l. magazine. DJ SupaLee is on the cover.

This was the summer of 2003, and she had recently graduated from college, was studying for the LSAT and browsing the store’s magazine selections. There were magazines for bikers and hikers, runners, travelers, eaters, golfers — just about every category of person one could think of, except disabled people, a group to which Roberson has belonged since she was born with a rare condition that contracts joints throughout the body, dislocates hips, locks the jaw. […]

She took it on. She saw the need for a magazine and decided she’d produce one. She called it “i.d.e.a.l.,” an acronym for “Individuals with Disabilities Express About Life,” and put the emphasis on young disabled people.[…]

Along with reported stories, Roberson contributed a first-person piece about how her disability and her bisexuality complicate her personal life. It’s the sort of frank treatment of the lives of disabled people that she feels has been missing from available publications, and was missing even from the first two issues of “i.d.e.a.l.”

“I’m my own worst critic,” she said. “I don’t think it was as relatable to me” in her life as a disabled person. Her hope is that disabled people reading the new magazine will find their lives reflected in it, “so people will disabilities can say ‘Oh my God, I’m not the only one going through this.’ “

Su Sayer at The Guardian: Politicians must recognise that people with learning disabilities have a right to vote too

Yet when it comes to democratic rights, the overwhelming majority of adults with learning disabilities still find themselves largely excluded by the complexity of the system and low awareness of their right to vote. Our research found that while 80% of people supported by United Response in England were registered to vote in the 2005 election, only 16% used their vote. This compares with a turnout of 61% in the general population.

As regular users of social services, public transport, health services and much more, people with learning disabilities are affected by political decisions in the same way as everyone else. The majority of adults with learning disabilities do have the capacity, as well as the legal right, to vote, and would like to do so if given the opportunity.

Ethan Ellis at NJ Voices Public Blog: Disability: the hidden horror of Haiti

Those of us with disabilities who know the island also know that after the last body is buried, the last hospital is rebuilt and the country begins to come alive again as its rescuers move on to the next disaster and the eyes of the watching world move with them, that people like us, now multiplied by the earthquake’s crush will be buried under the crushing weight of the country’s other unmet priories.

CNW Group: Women with heart disease are more likely to be poor than men

“Cardiovascular disease is the major cause of death and a leading cause of disability among Canadian women,” said Dr. Arlene Bierman, a physician at St. Michael’s Hospital and principal investigator of the study. “In fact, eight times as many Canadian women die from heart disease and stroke every year as from breast cancer. If we’re going to change this we need prevention programs that reach out to low income women and that focus on the effects of poverty and the factors that lead to poverty among women.”

The Telegraph (UK): Hi-tech prosthetics are getting our injured back on their feet

Historically, war has provided a great spur to technological development in prosthetics. Before the First World War, amputations were comparatively rare in Britain and most artificial limbs were primitive objects made by saddlers. […] The sudden influx of 41,300 young military amputees, many hoping to return to some sort of employment after the war, generated a new prosthetics industry and encouraged co-operation between limb-fitters and surgeons for the first time.

[Jerome Church said]: “But the warfare of the past eight years in Iraq and Afghanistan has produced a paradigm shift in the way we consider prosthetic possibilities.”

[Ian Jones, prosthetics manager said] “With a BK [below knee] injury there is no reason why a soldier should not return to front-line infantry. Some will be as fit as anyone else.

The Michigan Daily: Silently Disabled: The everyday struggles of those with invisible disabilities

It wasn’t until a week before the end of the academic year that [Leslie Rott] was diagnosed with rheumatoid arthritis and lupus — a chronic inflammatory disease that attacks the body’s tissues and organs. Rott said she was unsure of what accommodations she would be entitled to going into her second year. Unlike those who have lived most of their lives with disabilities, she had no previous experience as a disabled individual and didn’t even know how to go about asking for accommodations. […]

Felder, who is fairly upfront about her Crohn’s disease, says that despite her attempts to inform her classmates about her disability, she has received less-then-ideal reactions as sometimes, students “literally scoot their chairs away” when she talks about the disease in class.

There is also, at times, the issue of other students thinking accommodations means disabled students are getting “special treatment.” For example, LSA sophomore Sarah Rabinowe, who was diagnosed with two learning disabilities in the beginning of elementary school, said her classmates often judge her for getting accommodations because they don’t understand how difficult it is to live with her disability.

“I’ve had a little bit here of ‘she gets special treatment, she gets this,’ the sort of jealousy, almost, because they don’t understand how hard it is to live with this,” Rabinowe said.[…]

Though some members of the disabled community would like the University to take a larger role in advocating for and raising awareness of disabilities on campus, SSWD “acts under a philosophy of self-advocacy,” Segal said. “In other words, part of what we’re trying to do is turn people into young, responsible, independent adults, and part of the way of doing that is making people advocate for themselves,” Segal said.

Part of this notion of self-advocacy includes changing the campus’s perception of the disabled community without the University’s help. For example, if individuals want peer mentors or support groups, it’s their responsibility to make that happen. Likewise, if individuals sense a stigma associated with disabilities on campus, the disabled community must find a voice within itself to raise awareness of disability issues rather than rely on the University to make this change for them.

Call for Submissions is out for Disability Blog Carnival #63: Relationships

The call for submissions is out for the 63rd disability blog carnival, which will be held at the Dreamwidth disability community. PWD and allies are welcome to submit.

The theme is “relationships”. Avendya explains:

This does not necessarily mean romantic relationships – how has your disability affected your relationship with your family? How do you manage balancing friendships with a limited number of spoons? How well do your coworkers deal with your disability? Basically, how does your disability impact (or not impact) your relationships with the people around you?

Submissions are due by February 20th – just leave a comment in this post to submit your article. Older essays are welcomed so long as they haven’t previous been in a Disability Blog Carnival.

Spread the word!