Tag Archives: Disability

Weh Yeoh and Roum Phearom providing speech therapy services. Photo by: Anna Bella Betts Photography.

Last Week Today: Oh, I see!

Committed to giving you last week’s globaldev news today

By the water cooler: An impromptu chat with Weh Yeoh about OIC

Who is OIC: The Cambodia Project, and what do you do?

OIC is a project that aims to bring speech therapy services to the 600,000 Cambodians with communication and swallowing problems. Despite this huge need, there are no Cambodian speech therapists. OIC stands for that moment when you suddenly understand something you didn’t before. “Oh, I see!”

Why did you create OIC?

I never wanted to go to Cambodia and create another organisation for the sake of it. OIC is a project bringing together existing organisations that are doing great work. For me, it’s very much about Cambodians helping other Cambodians, so that one day, as a foreigner, I can walk away.

What motivates you to do your work?

For over a year, I worked side-by-side with a Cambodian health worker named Phearom, who told me that about 70% of the children she worked with had a problem with communication. Yet, she was unable to use speech therapy to help them. There are 600,000 people like the children she works with, who struggle to communicate with their family, friends or community every day.

Why should WhyDev readers support OIC? 

There are issues in the world that get lots of the attention and therefore plenty of resources, and then there are those that get swept under the carpet. WhyDev readers should support OIC because it’s addressing something that is a huge need, yet doesn’t receive the attention of other issues. People who are in Melbourne can come to our launch extravaganza on the 12th of November to find out more.

Can our readers get a discount on the OIC launch tickets? 

Absolutely! As a limited offer, we’re offering a 50% discount on tickets to the first 20 WhyDev readers who sign up to come to the launch. Simply enter the promo code “BONO4AFRICA” at the check-out.

Stay up-to-date with OIC through Facebook, Twitter, or their newsletter.

The week in news

Zambian President Michael Sata died in a London hospital at the age of 77. VP Guy Scott is the acting President until elections in 90 days, making him continental Africa’s first white leader since apartheid. Under the country’s constitutional “parentage clause,” Scott, whose parents were born in the U.K., won’t be allowed to run in the election.

A contingent of at least 150 Kurdish fighters has started crossing into Syria, to join the fight against ISIS for the town of Kobani.

In response to President Blaise Compaore’s effort to change the country’s law on term limits so he can stay in power (27 years wasn’t enough!), thousands of protestors have taken to the streets and set  fire to the Parliament building and government officials’ homes. Today, the President declared a state of emergency and dissolved the government.

The week on the blog

A dangerous crossover: Non-profits and the “view from nowhere”

That journalism – and, by extension, NGO communications – should be objective seems like a given. But Rowan Emslie questions the conventional wisdom, and the real implications of objectivity.

Bringing sexy back to resilience and well-being of aid workers

In her effort to usher in an era of aid worker wellness, Nuran Higgins launched Emergency AIDio, an online radio show. She shares the impetus behind the show – and chats with WhyDev co-founders Brendan Rigby and Weh Yeoh on the latest episode!

Resilience: Moving the focus from our projects to our selves

We talk a lot about aid worker wellness practices, and now there’s scientific evidence they really work. Amanda Scothern explains the latest research findings on well-being.

Globaldev special edition: Catching up on disability and development

More than just a statistic

An underdog story

The people who “don’t count”

Seeing past disability

The therapy that speaks volumes

Payment for the people in NGO adverts?

It’s easy to criticise.

Social justice tours, or poverty tourism?

Video International migration and remittances – explained with Legos. (01:59)

Upcoming events

OIC: The Cambodia Project: Launch extravaganza | Melbourne, 12 November (Use the promo code “BONO4AFRICA” for a discount!)

You can also check out our other events and listen to the MissionCreep podcast.

Always on the go? Have a version sent to your inbox every Friday. Just sign up to the Last Week Today newsletter.

Featured image is Weh Yeoh and Roum Phearom providing speech therapy services. Photo by Anna Bella Betts Photography.

Last Week Today: 3 October 2014

Committed to giving you last week’s globaldev news today

What happens when Thor gets too tired to pick up his hammer? It looks like a new Thor steps in. Only this Thor is a woman.

Marvel Comics recently made waves when they announced they were making the God of Thunder female, and now a preview of her first issue is out.

Just to clarify, “This is not She-Thor. This is not Lady Thor. This is not Thorita. This is THOR. This is the THOR of the Marvel Universe. But it’s unlike any Thor we’ve ever seen before.”

Fox News apparently disapproves of the change.

The week in news

Tens of thousands of Hong Kong residents have taken to the streets in unprecedented (and unusually polite) pro-democracy rallies. Beijing is responding about as you’d expect.

Tragedy struck in Japan, as Mount Ontake erupted unexpectedly, killing at least 47 people so far. And two suicide blasts hit Kabul, killing eight Afghan soldiers, just two days after Ashraf Ghani was inaugurated as the country’s new President.

In other news, David Cameron announced that Tories resent poor people. #FreudianSlip?

The week on the blog

Wearable impact: Ethical fashion explained

From t-shirts made of organic cotton to shoes made of old tires, ethical fashion is getting more trendy. But do these efforts to be responsible have an impact? Liza Moiseeva explains the fashion industry’s potential to make a difference, and its shortcomings.

Accepting flaws and doing good: Some thoughts on cognitive dissonance

How can aid workers sleep at night? Erol Yayboke continues the conversation on cognitive dissonance with advice on how to handle working in a flawed industry – and how we should be thinking about development work in the first place.

The week in globaldev

The problems with praising the female pilot who bombed ISIS | Vox

Jude Law, Akon and the DRC | VICE

A toast to Scott Morrision for his plan to send refugees to Cambodia | Sydney Morning Herald

Life in the time of Ebola | Think Africa Press

Support for volunteers with disabilities | Devex

Audio Laura Seay says we need to stick to the facts on Ebola. | On the Media (09:11)

Upcoming events

Learn how to utilise crowd funding in your organisation: A NetSquared Meetup | Melbourne, 7 October

You can also check out our other events and listen to the MissionCreep podcast.

Always on the go? Have a version sent to your inbox every Friday. Just sign up to the Last Week Today newsletter.

Featured image from Marvel comic book.

CABDICO provides therapy for children with disabilities.

Help Weh win the Anti-Poverty Award

Our co-founder, Weh Yeoh, has been making waves in Cambodia, working with some of the most vulnerable people. There are many areas that need attention across the world, but disability often seems to fall far behind. Weh is doing his best to bring basic health services to people with disabilities.

Please check out his 40-second video, explaining why this is important, and help him win this award.

You can vote for him by visiting his page and clicking the Like and/or Tweet button. The person with the most likes and tweets by 19th September will win the competition.

Please visit:

Weh Yeoh’s Uniting Care Anti-Poverty Award application.

Here’s a collection of further reading on this topic:

From the Sydney Morning Herald

From the Huffington Post

From ABC Radio National

From the Cambodia Daily here, here and here.

Roum Phearom with one of the children she provides speech therapy for. Photo by Anna Bella Betts.

Why did this woman refuse a job offer that would double her salary?

This is Phearom and she is my hero. She is one of the reasons why I still believe that we can do great things in global development.

As Phearom’s organisation is facing a funding crisis, they are only able to pay her $200 a month. Recently, she was offered another job that would see her salary double. Amazingly, she turned it down. Why would she do this?

This is what Phearom’s day looks like. She travels by motorbike to the small office, just outside Siem Reap, Cambodia, where her team members congregate. It’s over 35°C already, but the office doesn’t have air conditioning – only a few fans to keep the staff cool. She brings her own water from home, because they can’t afford a water cooler.

After some planning, she gets back on the motorbike and travels for an hour to meet 11-year-old Ouk Ling.

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Photo credit: Weh Yeoh

Ling has cerebral palsy – brain damage that occurs in a young brain around the time of birth. As a result, his movement is affected and his speech is slurred. He’s intelligent and affectionate. In fact, when I accompany Phearom to see him, he bursts into a huge smile and runs towards her to give her a big hug.

Since Phearom has been visiting him, transformational change has occurred in his life. Where he was previously incomprehensible, he can now communicate basic sentences with those around him. His movement has improved as well. He goes to school daily, by riding his bicycle. As his family now understands that he only has problems communicating, they no longer label him as “stupid.”

Phearom has 36 children like Ling to keep up with. Not all of them have had such huge progress as him, of course, but that isn’t through lack of trying. Phearom herself didn’t finish high school. She never went to university and what she has learnt about how to help children with disabilities has been on the job, through 15 years of experience.

She is of the age where most Cambodian women are married and having children. Recently, her mother tried to arrange for her to be married to a local businessman, which would mean quitting her job and helping him with his business. Phearom refused.

“If this man really loved me, why would he stop me from doing the thing that I love the most?” she asks. “Often in Cambodia, people don’t think that women can work in different fields. So, I am even prouder to be a woman working in this job.”

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Photo credit: Weh Yeoh

What made Phearom turn down a job with another organisation that would see her salary double?

Recently, she has been part of a pilot program improving her knowledge of speech therapy, with the aim to help children with communication and swallowing problems. She estimates that up to 70% of the children she sees have problems with communication, while up to 60% cannot swallow food and liquid safely. The latter can cause pneumonias and often death.

In fact, at least two children that Phearom visited have died in this manner. She describes how one of them literally choked to death on his own phlegm because his swallow was not strong enough to allow a safe passage into his stomach.

This weighs heavily on Phearom.

“Before, I was not clear on how to work with children with communication and swallowing problems, but when I had skills on speech therapy, it made it easier for me to make decisions on my therapy,” she tells me.

“I refused the job that paid more because I have had the opportunity to learn about speech therapy. That convinced me to stay.”

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Photo credit: Anna Clare Spelman. www.annaclarespelman.com

World statistics state that only 13% of people are actively engaged in their jobs. When I worked as a physiotherapist in a public hospital in Australia a decade ago, one colleague was incredibly inventive in the ways that he would avoid doing work. He would either disappear to the local shopping centre, or hang out in the emergency fire stairwell, playing Snake on his Nokia for hours, rather than see the patients he had been assigned to. I often thought it would be less effort for him to just do his job, rather than coming up with inventive ways not to.

Despite her lack of education, Phearom’s perspective on disability and patient care trumps most people that I’ve worked with in the past. She just gets it. Without a high salary, and without high status, Phearom is doing this job because she really does care. Any investment that we put into her, in terms of training, time and energy, we’re going to get back a hundred fold.

The current situation is by no means perfect. Even with my now fading memory of good physiotherapy practices, I can tell that Phearom lacks a lot of skills in therapy that prevent her from doing a great job. She isn’t reaching her potential. But that isn’t anything to do with her – it’s to do with lack of resources.

I started this piece saying Phearom is one of the main reasons why I still believe in global development.

What we see with Phearom is the ultimate development dream. Cambodian people helping Cambodian people. Surely, this is what global development should be all about.

Our role, as foreigners working in this field, should be to help local people do their jobs better. To give people the resources to be effective. And yet somehow, amongst the billions of dollars spent on aid and well-meaning yet ineffective small projects that we start, this often gets forgotten. Nonsensically, we restrict funds so that local organisations cannot spend them on staff salaries. Invest in people like Phearom and great things can happen.

You can support staff like Phearom to do their job more effectively by contributing to this campaign. $200 keeps her doing her best for one month.

Featured image is Roum Phearom with one of the children she provides speech therapy for. Photo by Anna Bella Betts Photography.

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The way we deliver aid and development is flawed. Here’s why. [INFOGRAPHIC]

In global development, it seems that some issues get more traction than others. Huge inequities exist because too often, issues are determined by what rich countries perceive as important, rather than what people actually need. As a result, though great gains are made in certain areas, there are plenty that fall to the wayside.

For the past year, I have worked, mostly on a voluntary basis, with CABDICO, a local Cambodian non-profit organization working with people with disabilities. They had identified that there was a huge need for Speech Therapy in Cambodia. The population that this profession aims to treat are people with communication and swallowing disorders.

I’ve been incredibly fortunate to see up close what CABDICO can achieve, with minimal resources. They have affected the lives of thousands of people with disabilities, all with an annual budget that is smaller than many UN salaries. Due to the lack of available funding in disability, they have had to let some staff go, some of whom only earn US$150 a month.

Organisations like this cannot reach their potential because donor priorities do not target the areas where funds are really needed. They are left to try and contort the real needs of a population to fit the donor’s call for proposals, or, more often than not, simply shut down. Once I dug deeper into the situation in Cambodia, it became clear how the way we deliver aid and development is incredibly unequal. No one is discounting the validity of causes that receive good funding. They have made great gains because they are internationally recognised.

However, for those other causes left behind to make similar progress, they too need some of the same attention.

If you wish to read more about CABDICO’s project to work within this area, and their need for support, you can do so via this Huffington Post article. Click the image below if you would like a larger version.

Ignore coffee

Credit: Brendan Rigby

Can we afford not to include disability in development?

A classmate in an economics class once said that special education was a poor public policy choice because the return on investment would not be high. Unfortunately, this is the type of misguided utilitarian thinking that has largely left disability off the international health and development agenda.

In societies with innumerable needs, persons with disabilities are not considered a priority.  Can we really ask countries to have services for people with disabilities when even the “regular” people have trouble accessing basic healthcare and even “normal” children are often out of school?

The question should not be: can we afford to address the needs of persons with disabilities? The real question is: can we afford not to? More than 15% of the world’s population, over one billion people, have some kind of disability. While disability is not mentioned at all in the Millennium Development Goals, from the evidence it is clear that the inclusion of persons with disabilities is going to be absolutely essential for their realisation.

Credit: Brendan Rigby
Credit: Brendan Rigby

Let’s first look at this problem at the micro level. When a child with a disability is born it is sometimes viewed as a great shame or curse on the family. Due to this stigma associated with disability, often times the father and/or extended family will abandon them. The mother often finds it difficult to work because, without a support network, no one can care for the child. This plunges the family into poverty.

Without assistive equipment and therapy services, the child is at greater risk of health complications. Children who need assistance with toileting in areas with poor sanitation are at greater risk of diarrhea and urinary tract infections. Lying in one position tied to a bed all day causes terrible bedsores, which can also become dangerously infected. Children who have difficulty with swallowing are at greater risk of aspirating and getting pneumonia, the leading cause of death of children worldwide.

The additional expense of treating these problems is often unaffordable for the family that is already in economic straits because of social exclusion. Even if they do try to go to a doctor, persons with disabilities are three times more likely to report being denied care. The cost of leaving them untreated can be deadly, and it is the reason that UNICEF estimates the mortality rate for children with disabilities is as high as 80% in some countries. Yet for all this vulnerability, disability is not often a major topic in conversations about reaching MDG 4: reduce child mortality.

Thinking about persons with disabilities as a lost cause is a self-fulfilling prophecy. Keeping children with disabilities hidden and locked away at home or in institutions sentences them to a lifetime of being kept that way. Studies show that 98% of children with disabilities worldwide are out of school. Without any therapy or services and exposure to the outside world, they will never be able to fully enter and integrate into it. Yet despite this staggering statistic there is little conversation about what MDG 2: Achieve Universal Primary Education means for children with disabilities who may need special education.

Families that are stigmatized and without support are caught in a poverty trap of a different kind too often overlooked by major development organizations. It is a vicious cycle that costs both families and the societies they live in an incredible amount in healthcare spending and lost productivity, both from the individual with a disability who has been denied a chance to work and their family who must take care of them instead of engaging in other productive pursuits.

These injustices and denials of basic human rights compound to have major effects on a macro level. Indeed, a study done by the International Labor Organization found that the cost to society in low- and middle-income countries of excluding people with disabilities is “large and measurable, ranging from 3 to 7 percent of GDP”.

That cost is not something that developing countries can afford. So, what if instead we imagine the life of a child with disability as one full of possibilities? Community-based services for persons with disabilities can make a world of difference for both them and their families.  Promising models for promoting inclusive societies in the developing world are beginning to emerge.

Take, for example Ima* and Neemah*, two individuals with intellectual disabilities in Tanzania currently being served by a small local program called Building a Caring Community. Since attending a small community care center in their local parishes, they received basic education and occupational therapy services.

While at this safe and nurturing place, their mother had the opportunity to work – one taking a micro-credit loan to start a small shop and the other working in a social-business sewing co-op. After reaching adolescence, they attended a local vocational training center alongside non-disabled peers. Now they are employed, Neemah cleaning and helping her mother raise chickens, and Ima in the program’s social-business construction co-op alongside fathers of children with disabilities. They are participating and included members of their community.

Even children with the most severe disabilities and their families can be helped by such services. Take for example, Eli*, a child with severe cerebral palsy and intellectual disability. In addition to receiving a custom wheelchair and attending the center, his mother, Jan, underwent training in disability care and basic therapy techniques and is now employed by the center. She is now able to both provide for her son and also serve as a leader in her community, teaching mothers and creating a virtuous cycle of acceptance and improved health.

For those for whom the moral argument is not enough, this economic argument shows when we invest in society’s most vulnerable, the ripple effects are huge. Mothers that would have had to drop out of the labour market to care for their children are now starting businesses. Children who would have been written off as useless burdens on their families are contributing and participating members of the community. Even those whose impairments are severe are treated with human dignity.

Persons with disabilities must no longer be ignored in the post-2015 development agenda. We need more research on what community-based disability services models are most effective and how to bring them to scale. We need mainstream development programs to be inclusive of persons with disabilities in their operations.  The possibilities to make great strides in the tangible realisation of the rights of persons with disabilities are huge – if only the international community is willing to make the strategic investment in their equality.

 

*Names of all children have been changed for privacy purposes.

Who is the focus of the voluntourists mission? Photos like this speak volumes.

Hey voluntourist, take a back seat!

This originally appeared on New Matilda

Last year, I spoke with an American lady who brought troupes of foreign volunteers to do a few weeks of “giving back” in Cambodia. The main objectives of her non-profit organisation are to provide tourists with the experience of helping those who are less fortunate, in international locations, for an intercultural learning experience. If the people in poor countries benefit, it seems like a fortunate by-product.

I stumbled across this organisation in my work with a small organization called CABDICO, who work with people with disabilities in poor communities in Cambodia. The American organisation was giving adult-sized wheelchairs to children with disabilities. Why? Because despite their suppliers making adult wheelchairs, they preferred their volunteers to interact with children rather than adults.

The wheelchairs are designed in the USA by a partner organisation, made in China, flat packed in containers, and shipped from Shanghai to the destination of need. Once they arrive in the country, such as Cambodia, they are assembled by local workers or volunteers.

People don’t need any particular skills to assemble them, and in fact the design is intentionally dumbed down so that, for example, unskilled tourists could assemble them together at “wheelchair parties”. On top of this, as they are made with parts that cannot be found locally, if they break down, the communities can’t repair them.

Wheelchairs such as this are manufactured offshore, then delivered and assembled by volunteers at "wheelchair parties".
Wheelchairs such as this are manufactured offshore, then delivered and assembled by volunteers, who brand the wheelchairs with their own names, at “wheelchair parties”

In the process of being given to recipients, the distributor works with local partner NGOs to “verify need”. Yet, as this occurs right at the end, this step seems somewhat tokenistic. The need is verified, but there are no other possible solutions because only one type of wheelchair exists.

So even if the product doesn’t fit the need (adult wheelchairs for children), there is no alternative available. In the absence of any real alternatives, it’s hard to imagine that any poor family would refuse something if it is given for free.

A representative from another local organisation in Cambodia recently told me that he estimated that 75% of these wheelchairs are not used as wheelchairs. Instead, they are commonly used as pieces of furniture for other family members. We can speculate this is because they were inappropriately prescribed, or they broke down and were unable to be fixed, or the need changed and there was no follow up or reassessment.

On the website of the manufacturer and distributor, Free Wheelchair Mission, they claim to have delivered 8,250 wheelchairs to Cambodia. The cost of one wheelchair, according to their site, is $71.88. Incredibly cheap for a wheelchair, yet incredibly expensive for a piece of furniture.

This means that they have been responsible for delivering the sum total of $445,000 worth of IKEA-like furniture, direct from factories in China, to Cambodia. There’s your aid money at work right there.

When I raised my concerns about the effectiveness and dangers of this program, the American lady’s response was to say that what she was doing was inspiring people from developed nations to care. She was “lighting a fire” underneath them, so that they would do more good in their lives in the future. My response to this was “what is the point of this, if you don’t make a difference to people’s lives in Cambodia?”

Who is the focus of the voluntourists mission? Photos like this speak volumes.
Who is the focus of the voluntourists’ mission? Photos like this, taken from the ethical voluntourism organisation’s website, speak volumes.

As nonsensical as this approach is, this kind of “voluntourism” is rife in places like Cambodia, and not just in the disability sector. “Orphanage tourism”, where tourists are able to visit orphanages, play with children for a while, and generally feel good about themselves, is a booming industry in Cambodia. Yet the dangers around this are well-documented. Supporting a system of institutional care for vulnerable children, when there are better alternatives, is only one reason why this is problematic.

Elsewhere, unskilled Western tourists have been transported at great expense to build schools, churches and other buildings in poor places, often supplanting local labour and hence depressing the local economy.

It’s perhaps too easy to sneer at well-intentioned, yet clueless, foreigners who come to poor countries with the aiming of helping. Perhaps they do not know better. However, there are a range of better initiatives that do make a difference in places like Cambodia.

As I witnessed recently, there are already some incredibly ingenious solutions to problems, owned and initiated by Cambodian people. In regards to wheelchair provision, some Cambodians, aided by foreigners who play a supporting role, are tackling some incredibly difficult problems step-by-step.

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Thankfully, small scale and locally grown solutions do exist. They just need our support.

This wheelchair is a good example. It has large bicycle wheels so the person can travel longer distances and a smaller castor that drops down for manoeuvring indoors. It allows the person using it to tackle both the difficult roads that exist outside the house, while also being able to use the wheelchair inside their own house.

I spoke to the Cambodia man who leads the team that makes them, and was fascinated by his thoughts, one of which was quoted as the title of this piece. He has worked with foreigners, like myself, previously with some good success. For example, he worked with a British engineer who listened to what the Cambodian people needed, provided his own technical expertise, and then worked with him to come up with the design. Once he left (which mind you, unlike the voluntourists, was not a matter of weeks, but months) the work could be continued independently by the Cambodian people.

The story of this Cambodian man is in itself quite inspiring. He graduated from high school during the civil war, travelled overseas to educate himself and source ideas, and now works virtually unnoticed making and modifying equipment like this for people with disabilities. He is so humble and away from the spotlight that he wouldn’t even let me take his photo. Oh, by the way, the team of 18 mechanics he has trained all have disabilities.

Often, the answers to the problems are right in front of us. Foreigners should take a supportive role in helping people access resources, be they financial, technical or otherwise — not pretend to help while really putting ourselves in the way.

Cambodian Geo Savy, who had his leg amputated because of diabetes. Photo courtesy of IRIN news.

How to value over one billion people

Over 15% of the world’s population lives with some form of a disability. Yet, in the year 2000, when the Millennium Development Goals (MDGs) were formulated, there was not one explicit mention of disability within it. Since then, progress towards recognition for the over one billion people across the world living with a disability is slow.

In the United Nations 2013 MDG report, disability is mentioned but once within the 59-page document. At this rate of progress, by 2026, we may be lucky enough to see the word “disability” mentioned twice.

On September 23 this year, a UN high-level meeting was held in New York, to discuss the under-representation of people with disabilities within the development agenda, through the MDGs and other internationally agreed conventions. Preceding this, a high-level breakfast, presumably involving pancakes and croissants placed on unreachably high buffet tiers, was held with UNICEF and the Permanent Missions of Mexico and Australia to the United Nations.

The outcome document from the UN meeting makes for good reading, urgently asking development actors to promote the inclusion of people with disabilities, as well as advocating for disability-specific services. There is nothing surprising in there, particularly for people familiar with disability trends worldwide, but that isn’t to say that it isn’t chock-full of common sense.

Speaking of which, a recent Inter Press Service article, which I would highly recommend reading, highlights some of the reasons why those with disabilities have been continuously ignored at an international level. For example, in health-related interventions, we tend to focus on lack of productivity as a reason to intervene. But that doesn’t help everyone of course – especially those with moderate to severe disabilities.

Another interesting point raised by this article is that of perception. In my mind, this is the fundamental reason why disability is not high on the international agenda. If we want to know why those with disabilities are being ignored, we simply have to look at our own perception of the situation.

After the Boston Marathon of April 15, 2013, runners who lost limbs from bombs exploding during the event were flooded with millions of dollars in donations for medical care for the public. As of September this year, $69.8 million had been received by the One Fund Boston, a foundation established to administer funds to the 294 victims of the bombings and their families. Of these, 14 people required amputations.

Yet, in the US alone, approximately 65,000 diabetic patients require lower limb amputations yearly. Resources for the latter group are scarce, and even more scarce in poorer countries like Cambodia.

Cambodian Geo Savy, who had his leg amputated because of diabetes. Photo courtesy of IRIN news.
Cambodian Geo Savy, who had his leg amputated because of diabetes. Photo courtesy of IRIN news.

Similarly, organisations in Cambodia that care for victims of land mines are relatively well resourced in comparison to those that deal with more complex disabilities, such as Autism or Cerebral Palsy. In 2012, there were 185 land mine casualties, down 12% from the year before.

The reality is that these two examples illustrate a fundamental difference in the way different groups with disabilities are perceived. We support one over the other because of our own perception of people with disabilities.

The identifiable victim bias states that we are much more likely to help a victim that we know and understand. It explains why so many people opened their wallets to assist those who were victims of Boston Marathon bombings. The more we understand and can identify with a victim, the more likely we are to want to support them.

Similarly, land mine victims in Cambodia and runners injured during the Boston Marathon share a few key common attributes. They are all victims. They are blameless. It could happen to any of us. The cause of the problem (and perhaps the solution too) is simple and obvious.

Our desire to keep things simple, and not overwork our brains means that we naturally have a bias to support these sorts of projects. Compare that with the mental energy (and education) needed to understand how diabetes can lead to lower limb amputations, or how unsafe birth practices or poor maternal health can lead to a child being born with Cerebral Palsy. These concepts are more difficult to grasp and therefore less likely to receive support. This explains why projects that could potentially assist over 600,000 people in Cambodia struggle to get support from traditional sources.

Yet, research suggests that people who use a more analytical style of processing information are less likely to default to the identifiable victim bias. They are more likely to support the greatest need, rather than the victim that is easier to identify with. What this suggests in practice is that potential donors need to take the time to analyse the situation more, and not donate purely on the basis of impulse or emotion. This might not seem like anything remarkably ground-breaking, but it is something to keep in mind.

Unfortunately, as long as NGO marketing continues to follow the lowest common denominator approach, it is unlikely that we’re going to see a major shift in the way appeals are made sector-wide.

How then do we ensure that people with disabilities are no longer forgotten worldwide? We encourage people to look at the facts and figures on the need that exists, and discourage them to support based upon their ability to identify with the victim alone. Pushing back on these instincts might just mean a brighter future for over one billion people in the world.

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How services, not “innovation,” can change lives

“There’s no such thing as the ‘voiceless’. There are only the deliberately silenced, or the preferably unheard.”

- Arundhati Roy

Recent trends in disability represent what is happening in development more globally. The world of disability is at a crossroads. Amongst those working in this sector, it’s a well-known fact that disability was not explicitly mentioned in the Millennium Development Goals (MDGs), and as such, any momentum to garner action in disability has been stymied. Funding bodies have anecdotally stated that they will not provide funds for disability projects, because they are not a priority as identified by the MDGs.

As such, competition over funding in disability is higher than ever.

Perhaps searching for a way in which to make maximum impact with minimum outlay, some funding bodies have recently indicated that they will preferentially fund innovative approaches to social change. Although advocacy is not a new method of creating change, some see it as the innovative way forward. Advocacy, they say, is a game changer. It alters the way that community and society at large perceives disability. It forces government and other stakeholders to allocate necessary resources for those with disabilities. It changes the landscape of disability.

On the other hand, finding funding for traditional services such as rehabilitation is increasingly difficult. Rehabilitation is a broad term that encompasses a range of services that aim to maximise the potential of people with disabilities. They may include therapies such as physiotherapy, occupational therapy, speech, language and communication needs therapy and social work.

We can only speculate on the spectrum of reasons why rehabilitation is going out of fashion.

First, rehabilitation is, relative to advocacy, expensive. In poor countries, it involves paying staff to travel to communities, which are often dispersed across great distances, to treat children from families who cannot access services that exist only in cities.

Second, there is a growing perception in many countries that government should be the one providing these services (and they are usually not).

Third, rehabilitation requires a significant investment in time to demonstrate a result. You cannot expect to have children walking overnight, and although changes to individual lives can be transformational, the sum of these individual changes take a long time to be recognised at a societal level.

Last, and perhaps most obviously, rehabilitation just isn’t sexy. Sure, there has been huge investment into evidence of what works, guidelines from the World Health Organization on how it should be done, and it can definitely change lives for the better, but it ain’t innovative.

Without discounting too greatly the contribution of advocacy to improving the lives of those with disabilities, basic services like rehabilitation should always be the core of disability work.

A good example of this can be seen through the story of Chuon Chhon, a now 14-year-old boy who lives in Siem Reap province, Cambodia. Although Siem Reap is well known for the world famous site of Angkor Wat, and attracts 1.5 million visitors every year, it is the second poorest province in Cambodia.

Chhon is an intelligent boy who has cerebral palsy, a disorder of the nervous system that changes movement and muscle strength. It comes from damage to the brain before birth, at birth or when the child is very young.

Chhon spent the first eight years of his life in his parents’ house crawling on his belly like an animal. The community at the time used the word “snake” to describe him (an extremely derogatory term in Cambodian culture). His legs would not support him to walk, and he faced great difficulty with everyday activities.

CABDICO, an organisation that I currently work with, were the first disability professionals to come across Chhon at the age of eight.* They found him in a pitiful state. He was dirty from crawling on the ground, hidden in the back of the house which he had never left and didn’t go to school.

After receiving home-based rehabilitation weekly, Chhon gradually began to improve his mobility. Now, he is able to move around in a wheelchair, helps his family in the production of palm sugar and goes to school. He has become an active and productive family member – a far cry from his younger days as a “snake.”

Image credit: Anthony Jacopucci/Handicap International. Reproduced with permission from CABDICO.
Image credit: Anthony Jacopucci/Handicap International. Reproduced with permission from CABDICO.
Image credit: Anthony Jacopucci/Handicap International. Reproduced with permission from CABDICO.

These recent photos of Chhon do not hint at the undignified life in which he used to live, before CABDICO began working with him and his family.

Chhon’s story demonstrates the transformative power of rehabilitation, and how, in the absence of basic services, children and people with disabilities are excluded from society. All of this occurred through staff working patiently with Chhon and his family, week in and week out, and providing him with basic equipment such as his wheelchair.

Even if we can see the enormous change in Chhon’s life through rehabilitation, what about changes to the way those with disabilities are perceived?

Despite some perceptions, rehabilitation is more capable of changing the landscape of disability than advocacy. In the absence of rehabilitation, children like Chhon never leave their houses. They never interact with those at school or the community at large. They simply cannot.

If you go into poor communities that lack access to services, and you ask them, as I have done before, whether or not their community has many people with disabilities, the answer is invariably “no.” The reason for this is simple. Those with disabilities are invisible. They are unseen.

As long as these people are ignored, and statistics for those with disabilities are woefully underestimated, disability will never be a priority. Not for the United Nations, not for government, and not for funding bodies. Most certainly not for communities.

Recent research by Veterans International Cambodia asked adults with disabilities from three provinces in Cambodia to rank the services that they require the most. Out of 206 respondents, 93% request rehabilitation services. A staggeringly low 2% rated advocacy.

These results indicate that people with disabilities themselves, in parts of Cambodia at least, value rehabilitation services over advocacy by a factor of almost 50.

Research conducted by Veterans International Cambodia, with funding provided by AusAID through the Australian Red Cross.

 

Yet, the overwhelming message from funding bodies is that advocacy and innovation are the pathways to improve the lives of those with disabilities. If development really is all about taking a bottom up approach, then who should we be listening to here?

Surely those who have disabilities.

This point illustrates the often yawning gap between what donors perceive will work and what communities themselves actually want.

In disability, but also more broadly in development, we need to pay attention to those tried and tested ways that work, even if they are not innovative and sexy. We need to be less eager to import our own ideas, and more patient to use ideas that may take longer, but are proven to work. Most importantly, we need to be willing to listening to the voices of people who really matter.

 

* This project received generous funding from AusAID through the Australian Red Cross.

 

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Why development workers should read children’s books

Certain trends inexplicably come into vogue every now and then. Take the current one of reading young adult fiction. Whether it’s Harry Potter, The Hunger Games, or Three Cups of Tea, it seems people everywhere are turning to fantastical works of fiction, to satisfy their desires for escapism into an unrealistic world.

Cross the line from adult fiction into reading children’s novels however, and you’ll be faced with a different reaction. “What can you possibly gain from a book written for children?” people ask.

The answer is simple. You can learn to think and be like a child again. This is a process that others have dubbed “unlearning” – letting go of what we have already learned or acquired.

Unlearning is a process of liberation, and it’s crucial for helping yourself to learn more. A fantastic metaphor is stripping the existing paint off a wall, so that you are able to lay down new paint over the top of it. Stripping the paint is a more arduous task than painting a new coat, yet we seem to focus more on the latter than the former.

I recently read The Phantom Tollbooth, by Norton Juster. The story centres around the adventures of a young boy named Milo, who is too bored with life to even look up from the pavement on his way home from school. For Milo, the world is full of facts and figures, which to him seems irrelevant.

The Mathemagician, who firmly believes that numbers are more important than words.

However, an unexplained package arrives at his house and inside is a cardboard tollbooth, which when set up, is a portal to another world ruled by two opposing kings. Azaz the Unabridged is the King of Dictionopolis, and his brother, the Mathemagician, rules the kingdom of Digitopolis. Both brothers are embroiled in an ongoing battle over which is more important: numbers or words.

The only solution to the problem is for a brave soul (you can probably guess who that is) to climb the Mountains of Ignorance and rescue the beautiful princesses Rhyme and Reason from their prison in the Castle in the Air. Rhyme and Reason were banished to this place because they refused to choose between numbers and words and thus infuriated both kings.

Along the way, Milo jumps to Conclusions, which turns out to be an island, swims in the Sea of Knowledge, meets the Whether man, who asks him whether or not it will rain, and spends time in jail with a Which, a kindly old lady who turns out to be nowhere near as scary as Milo imagined.When Milo orders a “light” meal during King Azaz’s banquet, he is served a plate of lightbulbs. When Officer Shrift, a police officer who is twice as wide as he is tall, wants to sentence Milo to jail, he asks him if he would prefer a long sentence or a short sentence. Milo replies that he would prefer a short sentence, to which Officer Shrift pulls out a piece of paper, writes “I am” on it, and hands it to Milo.

The heavy moralising tone of The Phantom Tollbooth sets it apart from other children’s books of the time. The message is clear; that the imagination is limitless. That experiencing new things with an open mind is ongoing, no matter who you are.

As you read the book, you cannot help but feel more and more childlike yourself. You want to be imaginative. You want to see the world as a child does. You want to appreciate simplicity.

I couldn’t help but feel how these attitudes are beneficial working in development. Taking a step back, the very concept of working in development is fairly audacious. It is quite bold to believe that you can take resources, whether they be human, financial or knowledge, and bring them to another country and culture to affect change.

We have an obsession with knowledge and learning in development. The much maligned phrases of “capacity building” and “trainings” indicate a willingness to impart knowledge that we have gained on other people. Armed with Masters degrees and limited experience in our countries of origin, we hope to bring what we know for the benefit of others.

But what if we were to approach these situations with an attitude of unlearning? What if, like a child, with eyes and minds open, we were ready to learn?

I was recently asked by some Cambodian colleagues to run a workshop on the social model of disability. This involved talking about how the definition of disability has changed, from a medical model, which highlights the impairments on bodies, to a social model, which emphasises the barriers that society places on individuals. Shifting the focus onto barriers is always an interesting exercise. We start to look towards society to see what barriers are erected by the community at large.

Milo meets Tock, a Watchdog, who helps him to unlock his imagination.

As a “trainer”, the implication is that I impart knowledge onto “trainees”. But if I allowed myself to “unlearn”, to strip back the paint off my own wall, then there was the real possibility that I could learn something valuable myself.

During this workshop, I always ask participants to collectively identify barriers that exclude people with disabilities from society.

When I held this training in China, participants tended to emphasise the physical barriers that such as lack of ramps and railings that prevented access to places for people with disabilities. However in Cambodia, the emphasis appeared to be more on stigmatisation and discrimination. In other words, attitudinal barriers seemed to be more disempowering.

Anyone who has spent considerable time in either of these two countries may not be surprised to hear these differences. But as a relative newcomer to Cambodia, this kind of information helped me to navigate working in a country and culture that I was unfamiliar with.

This is the value of reading children’s books such as The Phantom Tollbooth. They remind you that even as a so-called “expert” in a foreign country, at times, you’re more effective by relinquishing the baggage associated with what you have learnt. That seeing the world through a child’s eyes, and embracing that inner child within can help you along the way.

All it takes is ten minutes to remind yourself of the benefits of this attitude. As a start, I’d suggest heading over to read An Awesome Book, by Dallas Clayton, online via this link (thanks to Julianne Scenna for the recommendation). It’s a wonderful reminder of the power of dreaming big.

Next, you can purchase The Phantom Tollbooth here. I wish I’d read this book decades ago, but I’m thankful that I’ve read it now.

What children’s books have you read recently, and what did you learn?