Disability

Dan O'Neill with Tasneem, 13, a special needs student at the Mercy Corps-sponsored girls' school in Beit Rima, West Bank. Photo: Andy Dwonch/Mercy Corps

Little 13-year-old Tasneem immediately captured my heart with her big smile.

Developmentally disabled, she is a "special needs" student at the Mercy Corps-sponsored Beit Rima girls' school. Since coming to the school, she has made enormous progress. Once locked away at home, she now joins in all school activities and smiles a lot more. She is blonde and blue-eyed — which is very unusual for Palestinians — shy and very small for her age.

The West Bank town of Beit Rima has suffered significantly amidst the heated tumult of the protracted Israeli-Palestinian conflict. With many of the men imprisoned by Israeli occupation forces, the women have been forced into bearing very heavy family and economic loads.

Mercy Corps stepped into the gap by funding and managing two boys' schools and two girls' schools. Khaled — a Mercy Corps program leader and certified psychologist — explains that a high percentage of children suffer some form of Post Traumatic Stress Disorder. No surprise.

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Arazu Hassan Salih. Photo: Elham Ahmed/Mercy Corps

One of the participants in the Mercy Corps Iraq-sponsored Creating Murals For Kalar Kindergarten project — in which art students paint murals on local school walls — is 22-year-old Arazu Hassan Salih. Arazu studies at Kalar's Kifri Fine Arts Institution, where she enjoys painting much more than any thing else. She loves it so much that she dreams of being a painter for her lifelong career.

Her fellow students, as well as her teachers, bear witness to this dream. Despite suffering from a partial disability — she walks with considerable difficulty and has a minor speech impediment — Arazu often adds to the workload of her studies by participating in local events and gallery shows. As a result of that desire to get her art out into the community more, she was excited to join the Mercy Corps project — and we were pleased to welcome her!

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Hassan outside the Mercy Corps-supported computer lab where he learned skills that got him a job. Photo: Hussein Shakir/Mercy Corps

"Disability does not stand as obstacle between a man and his aspirations. The real disability is the disability of will and determination," 21-year-old Hassan told me. He comes from a poor family of five siblings that struggles to make a living and survive in the Souk Al-Shoyuk district of Nasiriyah, Iraq.

Although he is disabled — he has to walk on crutches — Hassan is one of the most well-known athletes in this part of Iraq. He is a weightlifter who has won gold medals.

He told me that being disabled is a tough thing to deal with in everyday life but, over the years, he has adjusted to it. This determined young man has committed to overcome his physical challenges and look to his abilities — not to his disability — in order to assist his family in pulling themselves out of poverty and improving their living standards.

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Wedged in a middle seat on a packed Avianca airliner, high over the Colombian Andes, I received a world-class education in treating landmine survivors.

It was my good fortune that one of the people I was squeezed between (the other being a sugar cane farmer from Pasto) was Diana Roa Castro, who directs the Mercy Corps Colombia Land Mine Vctims Project. Colombia has more land mine survivors than any other country in the world, and Diana is one of the world's leading experts on designing programs to help them recover and reintegrate with society.

Diana Roa Castro is a longtime advocate for the rights of landmine survivors in Colombia. She leads our project that treats the wide range of needs of survivors, from medical care to physical rehabilitation to employment. Photo: Miguel Samper for Mercy Corps

My Mercy Corps colleagues and I were flying from Bogota to Pasto, in the Colombian province of Nariño. There we would visit several programs dealing with that region's huge number of internally displaced persons, refugees from the world's longest-lasting war. We were a touch apprehensive -- not only was it a turbulent flight, but the previous evening a gunbattle occurred between Colombian soldiers and FARC rebels on one of the roads we would be taking.

We never made it to Pasto. Lightning, high winds, and poor visibility diverted our flight to Cali, then back to Bogota. As we roiled toward Cali, Diana explained how Mercy Corps is pioneering new approaches to dealing with the survivors of these random, often devastating explosions.

"Before, people would be treated for their horrible injuries, and then largely forgotten," She says. "Now, we treat them in a comprehensive manner."

The centerpiece of this treatment is a new sustainable rehabilitation center in Pasto. Thanks in large part to Mercy Corps funding, the rehab center features state-of-the-art facilities and cutting-edge equipment for diagnosing and treating victims.

"Landmine explosions affect the whole person," says Diana. "We evaluate everything, from the top of their head to the tip of their toes."

Beyond the obvious and immediate trauma of shattered bones and shredded flesh are less obvious concerns — hearing loss, microfractures, vision problems, social isolation, job loss. Everything is addressed.

"We try to give them back their dignity," she says.

Diana speaks of Yesid Arguello, a 22 year-old man from Caqueta who lost a leg and 50% of his hearing in a landmine explosion. In addition to treating his injuries and training him for a new career, this Mercy Corps program helped him learn how to read and write.

"The first letter he ever wrote in his life, he wrote to Mercy Corps," says Diana. "He said 'thank you, Mercy Corps. Thank you for my life.'"

"We told Yesid, as we tell them all, you're not the remains of what you were. You are the beginning of what you can be."

The next day the weather cleared, and we finally made it to Pasto.

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The last time I wrote here, I talked about the stripping of dignity through exploitative photography. Today, I’m going to write about the widespread abuse of a very marginalized group – as crystallized in a repulsive occurrence earlier this month.

You may have read the news: on May 10, a group of four young men — whose ages ranged from 18 to 20 — bullied a 14-year-old boy. They threatened him with beating if he tried to run. He didn't. And so they victimized the boy, tattooing him with vile imagery and words.

The boy that suffered this indignity — and, doubtless, dozens of other humiliations over his short life so far — is learning disabled. He was targeted for that reason. Unfortunately this kind of abuse happens every day — and, perhaps unknowingly, many of us help perpetuate the mindset that allows it to happen so often.

I acknowledge that I am more vigilant and sensitive — perhaps overly so — to this that almost anyone I know. I’ve walked out of movies when I’ve heard the word “retard” or something similar spoken in dialogue. I’ve lost friends when I’ve confronted and asked them to stop using derogatory language when talking about mentally challenged classmates. I’ve even gotten into fights over this kind of thing.

I think that casually tossing around words like “retard” or scripting entertainment that treats developmentally disabled people as punch-lines is nothing short of abuse. It violates human rights. It further isolates and dehumanizes an already-marginalized population. It reduces people to stereotypes and gives more opportunity to bullies.

I wonder why, for the most part, our society is so nonchalant about making fun of those who are mentally challenged. Is it because so many of them can’t speak for themselves or stand up for their rights?

The thing is, most of us are very concerned for the rights of certain marginalized ethnic or social groups. Honestly, one of the reasons I got into this kind of work was to — figuratively — get between bullies and their intended victims. We rightfully pour our time and resources into supporting the causes of the world’s most vulnerable people. So why do many of us laugh at jokes about one of the most vulnerable groups around — those with developmental disabilities?

I think we can all agree that everyone should have the right to dignity. That we shouldn’t consciously do anything that strips away that dignity. And so, if you haven't already, I’m going to ask you to do two things that might be harder than you think:

1. The next time you hear someone say the word “retard,” or refer to something as "retarded," or otherwise use those words in a derogatory way, call him or her on it. Words matter.
2. If you’re thinking about seeing a movie or watching a television show that explicitly makes a joke out of someone who’s mentally challenged, make another choice. Don’t support that kind of exploitation.

Change can begin with the words we choose. The choices we make. Small but significant stands that add up to shared action.

You might have guessed that I have a deep personal commitment to this issue: I do. My brother, Danny, is developmentally disabled. And I read this disturbing news story on Saturday — Danny’s 35th birthday.

We all care about human rights and dignity. Together, we do a lot to advance the causes of the vulnerable. So let’s change our minds, then change our words and see what can happen.

If you agree with me, please think about putting this sentence on your Facebook or Twitter: "Words matter. I’m standing up for the developmentally disabled, and against jokes and stereotypes. Stand with me: http://bit.ly/cxerFQ"

Thank you for reading.

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Mercy Corps outfitted a rehabilitation center in southern Colombia with the latest technology as part of a holistic program to reintegrate land mine survivors back into their communities.

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Congratulations to the Mercy Corps Mongolia team for winning the 2010 Disability inclusion Award given by InterAction!

Their work is living proof of how major strides for disability inclusion can happen rapidly with focused interventions and strong public-private-civil society partnerships. People With Disabilities (PWDs) are among the most marginalized groups in the rural areas of Mongolia where Mercy Corps’ programs are implemented. In only 15 months since our programming with PWDs began in Mongolia, the team has had nationwide impact through major policy change and fostering a culture of inclusion.

Mandal Urtnasan (Civil Society Director) and Oidov Vaanchig (FIELD Project Officer) hold the approved “National Standards for Accessible Construction and Walkways,” which Mercy Corps helped a task force write for the government of Mongolia. Photo: Mercy Corps Mongolia

As an initial step, Mercy Corps established a diverse multi-agency task force of leading Mongolian organizations and government and private sector representatives to deliver advocacy campaigns designed to improve the accessibility of public buildings and walkways for PWDs. Insufficient access to basic infrastructure prevents PWDs accessing basic public services such as education, health and social welfare, as well as limiting their ability to seek and find employment.

By consequence, most PWDs in Mongolia are housebound and isolated from community life. The task force also studied the legal environment and worked with engineers to design accessibility guidelines that were then presented to the Mongolian government.

In February 2010, the "National Standards for Accessible Construction and Walkways" became enforceable under Mongolian law. Although approval of the standards will alone not automatically result in greater access for PWDs, they do create the needed legal foundation and provide specific engineering regulations for all current and future buildings in the entire country.

This policy victory has also motivated disabled people’s organizations to strive for the full achievement of accessibility for PWDs in all aspects of life. As a result of the Mercy Corps campaign, 23 accessibility ramps have already been built by government and private sector agencies at their own cost and several agencies have also modified their facilities to accommodate the needs of PWDs (including Mercy Corps ourselves!).

The Mercy Corps Mongolia team has shown that successful public education, advocacy campaigns, collaboration with policy-makers and other activities supporting PWDs can be designed and delivered by and for local people without significant external resources.

Approval and implementation of the new National Standards is only a first step in ending the exclusion of PWDs from social, economic and political life in Mongolia. Real change will only be complete when PWDs are accepted as equals with all people in all spheres of life. As one program participant said, “do not give us aid, give us a chance.” Mercy Corps is committed to continuing its work with all people in Mongolia to help realize that dream.

Again, congratulations to Country Director Dominic Graham, Civil Society Director Mandal Urtnasan, program team members Nasandelger Zandan, Oidov Vaanchig, Erdenesuvd Nyam, Dashzeveg Enkhtaivan, Chimeg Chuluun, Odkhuu Sanjaa, Saruul Orsoo and all partner organizations that made these efforts possible.

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This July, President Obama signed the UN Convention on the Rights of Persons with Disabilities (UNCRDP). The news came to me during a particularly tough time in Basrah, Iraq. We were receiving frequent incoming fire and my colleagues and I had spent far too much time hunkered down in a bunker, sweating in body armor in 130-degree heat.

I have been Mercy Corps’ coordinator for disability rights in Iraq for more than two years, and the ''signing'' made me wonder: How will this help me or the many Iraqis with disabilities I’m trying to serve? I have seen similar declarations and clauses hundreds of times. USAID has a clause about the inclusion of people with disabilities, the World Bank does and the UN talks ad nauseum about it. But what is the actual impact?

So far, not much. According to the UN, the convention marks a “paradigm shift” — but just because you put in down on paper doesn’t mean that attitudes have change. A paradigm shift takes action. The Convention is intended to secure rights for all people with disabilities, but no signatory country is complying with it, so what is the enforcement mechanism? There is none, which makes it a grand but empty gesture.

If we really want to address the disability issue, we need to do three things. First, we must acknowledge the scale of the problem and the fact that we are not effectively addressing it. People with disabilities (PWDs) make up 10 percent of the world’s population, 650 million people, and every day that number increases. The World Bank estimates that 20 percent of the world’s poor have a disability.

Yet when the Millennium Development Goals — the international community’s agreed-upon targets for combating scourges like poverty and hunger — came out in 2000, there was no mention of disability. Sluggish or nonexistent funding flows have followed suit. This has to change; ignoring a problem doesn’t make it go away.

Second, aid workers must transform how we address the needs of PWDs. The international community too often “helps” people with disabilities through what are called “supply projects,” massive giveaways of items like crutches and wheelchairs. The problem is that a wheelchair, particularly the commonly supplied 28-pound hospital chairs designed for patient transfer, does nothing but provide a place to sit.

In order for mobility equipment to be effective, it has to be supplied on a demand basis, with the needs of a specific user in mind. The current supply model would be analogous to my collecting 435 pairs of shoes from Iraq and sending them to the House of Representatives with no information about size or width. The Representatives would then need to sort through the shoes to see what fits whom, and then try to make do with whatever was sent. We would never do that. So why do it for people with disabilities?

Finally, we need to effect an attitude adjustment by teaching people with disabilities to be activists and role models. Years ago, as an intern for Congressman Richard Stallings of Idaho, I lobbied for the Americans with Disabilities Act (ADA). In 1990, when the ADA was signed, the unemployment rate for PWDs was around 70 percent. Today, it is still 70 percent, and some studies even claim an increase in unemployment since the ADA.

What can we learn from this? Real change for people with disabilities is not about getting a ramp or a wheelchair; America is physically accessible. The main barrier for PWDs is the attitudes that the able-bodied population has about them. PWDs are often viewed through the lens of our limitations rather than our capabilities; this situation is even more marked in developing countries.

People with disabilities must be empowered to demand their rights and smash these preconceptions. Advocacy work to create this change is currently being implemented in Russia by Perspecktiva and was being implemented in Iraq by Mercy Corps in 2007-08 until funding unfortunately ran out.

The columnist Charles Krauthammer said, “Celebrating the paralytic's ‘courage’ is the psychological equivalent of calling an accomplished black person ‘a credit to his race’ — it is a patronizing act of distancing wrapped in the appearance of adulation.”

The UNCRDP is a patronizing act of distancing wrapped in the appearance of “rights.” For me and the millions of other people with disabilities around the world it changes nothing. It’s just a piece of paper that world leaders feel good about signing.

Thank you, world leaders, for defining my rights, but I won’t be impressed until you provide the funds to help me realize them. As a start, you can support smart, strategic programs that help PWDs take charge of their lives, not just squeeze into an ill-fitting wheelchair. Contact me if you need ideas — I’ll give you a program for PWDs that is inexpensive, effective and empowering.

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