Khalid's story: A mother's fight against stigma in her own community

Four-year-old Khalid Dualeh's room in an Edina apartment building is as cheerful as it can get. Ribbons hang from the ceiling. A cat, foot, butterfly and flower compete for attention in a black-and-white checkerboard poster on the wall.

But then there is the suction tube coming out of his throat and the constant hum of the machine that keeps him from choking. Despite his parents' best efforts, Khalid's room is dominated by a hospital bed, full of plastic intravenous bags and feeding tubes hanging from stands. A chart on the wall tells the various nurses and assistants who attend to him the size of the various tubes that go in and out of him.

Khalid was born with cerebral palsy. For his parents, Hussein Dualeh and Fardosa Ibrahim, refugees from Somalia, an already difficult life caring for him has been made more difficult by the barriers of language, shame and isolation that often accompany people with disabilities in the Somali community. Ibrahim has become an advocate, both for her son and for greater understanding in the Somali community, speaking out about getting the resources that are available to them.

"They feel ashamed, maybe they will hide those kids," Ibrahim said of others in the Somali community, as she stroked her son's foot sticking out from a sheet.

The barriers are not unique to Somalis or to Minnesota.

A recent study by researchers at the University of California, Davis, found that children with developmental disabilities in Hmong families, for instance, face significant barriers to receiving services. The obstacles include lack of accurate information, language difficulties, lack of trust and limited outreach.

In 2007, the U.S. Committee for Refugees and Immigrants put out a resource guide for serving refugees with disabilities, pointing out that — in some languages — there is not even a word for disability.

"It is tough because we try to avoid the stigma that it is even associated with any weakness whatsoever," said Ahmed Ismail Yusuf, whose book "Somalis in Minnesota" documents the immigration of Somalis to the state.

Yusuf works at a clinic that sees Somalis, often at the height of a mental health crisis. "At times, the affliction itself overwhelms them so then they have to seek some kind of relief," he said.

Coming from a war-torn region with little faith in corrupt government, many Somalis may resist seeking government resources available to them in the west.

"I see some Somali here, they are closed, they are not open to other people," Ibrahim said. "If you are not open to other people, you will not know what you need. You will not get what your child needs."

The Dadaab refugee camp in Kenya, 60 miles from the Somali border, is the largest contained refugee camp in the world, serving people mostly from neighboring Somalia. The Oxford University-based Forced Migration Review noted that people with disabilities, especially children, often face frequent beatings, stonings and verbal abuse in the camp. Mothers who give birth to children with impairments are often abandoned by their husbands.

While a disability in a home country or a refugee camp may prove a liability, it may provide an opportunity in the United States. John Keller, director of the Immigrant Law Center of Minnesota, remembers one Somali client several years ago who was saved from deportation because he had a disability.

"We were able to argue that he should not be sent back because there were no resources available for him to live," Keller said.

Ibrahim, who describes her age as "old enough," was born in Somalia but moved to Dubai in the United Arab Emirates when she was 6. She was trained as a nurse and worked in the burn unit of a hospital there.

When Khalid, the youngest of her three children, was born in Dubai, there were problems from the start. He was born by Caesarean section and doctors had trouble keeping a pulse. He had kidney failure.

Her husband, a naturalized U.S. citizen, watched over Khalid here alone for seven months before the rest of the family could reunite three years ago in Minnesota, where he works at a car rental company.

"With my background I know his diagnosis. He's having seizures. He needs medication, not herbal remedy. You can read the Qur'an for him. You can read the Bible. But still you need medicine."

She recently completed a leadership program called Partners in Policymaking, a course over eight weekends for people with disabilities and family members of children with disabilities. The program, which was started in Minnesota in 1987, now includes programs across the globe and has more than 23,000 graduates. It is designed to teach participants the skills to advocate for themselves, from pushing for resources from social workers to testifying on their own behalf at legislative hearings.

"They will give you courage," she said. "When you need something and they tell you, 'No, it's not possible. You cannot get this one.' I used to say, 'OK.' Now I cannot say OK. I have to get, I have to get."

The program, which will be accepting applications for its next class throughout the next two weeks, is not specifically directed toward immigrant or refugee communities and does not deal with cultural stereotypes or stigmas. Yet its platform of independence and self-advocacy has lent itself well for people in those groups. Since 1992, the council has funded separate outreach in the African-American, Native American and Hispanic communities to raise awareness.

"Every person comes in based upon their own background. They have to understand, this is an issue beyond my family, my neighborhood, my community," said Colleen Wieck, executive director of the Minnesota Governor's Council on Developmental Disabilities, which administers the program.

"When you see how some people have a disability and are dealing like normal kids, you will change what you are thinking," she said.

The future is uncertain for Khalid, who is subject to daily seizures and whose care is covered by Medical Assistance. He can make his displeasure known with a squint of his eyes when something is not to his liking, but he has never spoken.

Through her classes, Ibrahim has seen others with cerebral palsy communicate using a tablet or a special attachment to tap a keyboard. She believes that, at the very least, one day her son will find a way to communicate with her.

"Now I have hope," she said.

Mark Brunswick • 612-673-4434