Heroic people on a special mission

Desolated land, unpaved roads, dry landscape, hazy horizon, donkey carts, small motorbikes, roaming barefooted children, makeshift houses, no schools, health facilities, water, electricity or sanitation. This is how I describe the Salama settlement south of the Sudanese capital, Khartoum, which I visited last week with my colleagues. HCI has been operating in this area since 2003 empowering three community organizations in the area.


The poverty-stricken Salama settlement, home of more than 11,000 internal refugees, was founded 20 years ago by individuals and families fleeing conflicts in the West and the South of the country. Many live in stick frames temporary houses with waste plastic sheeting as a cover.

HCI operation in this area stretch back to 2003. HCI has been helping people in the area through three community-based organizations established by local residents. The history of each of the three organizations is a story by itself reflecting how few heroic residents had the courage to lead the change toward self-directness and self-support in the face of enormous challenges.

A case in point, community-based organization Disability People International (DPI) which was founded in 1995 by residents to provide the physically disabled with opportunities to share their talent and skills for the betterment of their entire community. They were determinant to lead the way towards a better life for their peers and their entire community.

DPI sponsors the community school with an enrollment of 600+. DPI students are required to pay a basic fee of US$ 25 per year. In fact, only about a quarter have the money and most of those that do pay can average only $6-7. More than half of this money is used to maintain school facilities and the rest to compensate basically volunteer teachers, who themselves are generally disabled.

These people founded the school to serve the community. All staff and teachers are disabled...disabled people serving the community, rather than being served.

DPI focuses attention on "dropouts," early leavers from either the DPI or other schools, often in the communities they left behind. Over 200 such children are now in the DPI program and receive basic education and follow-up. They attend afternoon classes from 2 to 4 p.m.

Teachers and staff in the DPI school and other programs are volunteers, including the principal.

Over the years, HCI has provided for DPI training, a library, school books, food supplements, credit capital, blankets, and holiday distributions. More recently, HCI is providing school bags, stationary and training suite for many of DPI's students, particularly primary and elementary students.

In 2005 a group of teachers from DPI, themselves disabled, founded El Nahda (Society for Well-being of the Physically Disabled) as a "sister organization" focused on the special needs of the disabled and their families.

Al Nahda surveys and registers the disabled, provides informal counseling and referral, and advocates for their rights within their community and with larger organizations and the government.

Al Nahda has 300 members, each pays $1 per month for membership. This money is used to maintain a small one-room office where the disabled can meet and which HCI has helped cover an area in back for outdoor meetings. Also with the help of HCI, plastic chairs have been added to complete this facility that is used for adult literacy and health/disability education in the afternoon. More recently, Al Nahda established a pre-school and an adult literacy class - also with the help of HCI, independent of DPI, for residents who need to remain close to home since DPI lacks sufficient space for either of these services.

Further, HCI helped both societies to offer credit for income-generating activities for low-income residents, and for the disabled and their families. Al Nahda's new program, funded by HCI, focus on those with disabilities or parents of disabled children.

Both societies, along with another local society Al-Hannan Association, are now working with HCI to implement a health campaign targeting resident children, particularly students served by the three NGOs. The project is conducting a needs assessment/research of health issues of greater concerns to the local community. The first intervention is eyesight tests and the provision of eye glasses for resident students. This will allow for the implementation of quick impact interventions that will build confidence between the partners and provide solid ground to expand much-needed health interventions in the area.

I want to conclude this by remembering Alfonse Muni's words, who founded DPI and was the director until he passed away last year in sad accident: "We wanted to help others. We as disabled people had suffered much and we couldn't simply stand by and let others suffer. Our struggle was one with our community...we were from the same background and lived under the same conditions and constraints. In fact, we were lucky, most of us are educated and have managed to make something of our lives. We thought we could help others do the same. That was our dream."

Layla, and her right to be given the opportunity for a better future

Physical and psychological disability among Iraqi refugees in Jordan is known to be very high, with higher rates among children and youth. About two thirds of disabled Iraqis are children and youth below the age of 24.

Layla, age six years, is the daughter of an Iraqi family who fled the conflicts in Bghdad in the mid nineties and took refuge in Zarqa, Jordan's second largest city, which struggles with poor physical infrastructure, congestion, industrial pollution, and limited community support capacity, as reflected in high rates of poverty, child labor and crime.

Layla has Down Syndrome which resulted in impairment of her cognitive ability, moderate learning disability, and noticeable slow physical growth as well as facial appearance.

"Although she is six years old, but her slow physical growth makes her look like a one year old baby," said her mother when I visited them with my HCI colleagues yesterday. "She can't talk, can't walk and eat very slowly like a newborn baby," her mother added.

Layla lives with her three brothers and sister and her two parents in a small apartment on the outskirt of Zarqa. Her father Jalal is a house-painter working irregularly in the informal market because he lacks work permit. His average monthly income of $200 can barely cover the $100 monthly house rent and the $100 monthly tuition for Layla’s special school for people with learning disability.

"I tried to look for a job to support the family income since my husband's work is very irregular, and at best what he earns is not enough to cover our basic needs. But I can't leave my five kids alone especially Layla who needs constant care and assistance to do her daily activities," her mother commented. "We don't have relatives here in Jordan to support us and we have no access to our relatives in Iraq, but we survive on occasional little assistance from our neighbors as well as from aid programs such your appreciated program," she concluded.

Although Layla's physical limitations cannot be overcome, education and proper care improve her quality of life. Early childhood interventions, screening for common problems, and vocational training, in addition to conducive family environment would improve the overall development of Layla.

"Since we enrolled Layla last year in this special school, we noticed significant improvement in Layla's receptiveness," said Layla's mother. "Now, she always smiles and we noticed improvement in her weight and more willingness to eat," she added.

I asked Layla's mother what the family most in need of. "Despite our terrible economic condition, I will do all I can to give Layla the opportunity to improve her overall development and her quality of life. She deserves to be given this opportunity. I will do all I can to keep her in this special school and provide her with the best environment at home which is vital to improve her overall development," Layla's mother responded. "Her monthly school tuition is $100 which covers the transportation since the school is not in Zarqa but in Amman. She also requires baby napkins, powdered milk, easy to swallow food, and I want to bring for her a clip-on chair," she concluded.

My colleagues continued the formal at-home needs assessment with Layla’s mother and the prioritization of their needs, while I sat with Layla playing with her and her ten-years-old sister Mariam who help her mother taking care of Layla, and her seven-years-old brother Yousef who was busy eating some the sweets we brought with us. HCI will provide individualized relief aid for those vulnerable Iraqi refugees with disability such as food and nutritional aid, basic home maintenance/appliances that contribute to accessibility and mobility as well as capacity for independent living, and essential medical equipments for people with disability.

I concluded my visit more convinced that HCI’s individualized support is a necessity. The need for at-home support and other one-to-one type of assistance by experienced social workers combined with individualized relief aid for Iraqi refugees with disability, particularly children and youth, is essential.

Helping people one person at a time: the case of Rahma

Rahma Kouzah, age twenty months, has a severely deformed skull and her eyes bulge out. She lives with her mother Samia and her brother Ahmed age 6 years in Zarqa, Jordan's second largest city, in small rented but untenable house lacking basic amenities. Her parents, from Palestinian origins, fled the conflicts in Baghdad in 2006 to Jordan. However, her father, who used to work as electrician in Iraq, has been deported from Jordan because he lacks legal residency and is now unemployed and living in the West Bank unable to unite with his family. Her mother, Samia, is neither Jordanian, nor technically an Iraqi. So she has no access to public or government services and her son Ahmed can't attend public schools.

Samia, with a non-stop smile, does not benefit from any assistance by aid agencies targeting Iraqi refugees (since she is technically not Iraqi) neither from assistance targeting Jordanians (since she is not Jordanian) nor from assistance targeting Palestinian refugees (since her husband is not registered with the UNRWA). For this reason, Samia told me that she is surviving on occasional little assistance from her neighbors as well as from programs such as HCI's new program in Zarqa.

Samia told me that she feels "sheltered" when HCI team visit her. I asked her why? She responded that she feels she is forgotten in her tiny house, but HCI team makes her feel being taken cared of. "Every time HCI team visit me or call me, they give me hope and I feel secure and not forgotten," Samia commented with a heartbreaking smile. "They come and sit with me on the ground asking me about not only my needs but more importantly my concerns and my hope. They make me feel optimistic in my difficult situation," Samia added. "They come and play with my disabled daughter, who I fear taking her out because people does not want to admit she exists and aid agencies refuse to see her, and many do not recognize her as human," Samia concluded looking at her daughter who sat on the couch quietly looking at us.

Rahma's mother suspects radioactive materials used in bombs in Iraq caused the deformities. Rahma sleeps at night with her eyes open bulged out because of the deformity, as she is still in Iraq afraid from bombs.

I asked Samia what the family most in need of. "I am badly in need of my daughter's basic supplies, such as milk, baby food, baby napkins, and more importantly I need a clip-on push chair for her that can conceal her face so I can take her out without raising the fear of my neighbors, particularly kids," Samia responded. "When I take her out, people on the street look at me as I am carrying a non-human," Samia added.

We left Samia's apartment accompanied by her 6-year-old son Ahmed who is hoping to attend a school later this year.

Kouzah family is one of the beneficiaries of HCI's new program in Zarqa with an objective to enhance the standard of living of vulnerable refugees coming from Iraq, particularly persons with mental and physical impairment, female-headed households, elderly and children. HCI will provide individualized relief aid for those vulnerable Iraqis refugees with disability such as food and nutritional aid, basic home maintenance/appliances that contribute to accessibility and mobility as well as capacity for independent living, and essential medical equipments for people with disability.

I got in the car and I started to assess our approach and why Samia's family who is with no doubt one of the most vulnerable families in Zarqa has not had access to services by aid agencies yet other than HCI: what makes HCI different and efficient is its exceptional at-home individualized support and individualized relief aid. We reach vulnerable people, listen to them, identify with them their needs on the ground, and provide them with such individualized relief support. It may take more resources but this what HCI is for: helping people one person at a time.