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Soaring with Determination; 9-Year-Old Strives for Independence, Societal Change (The Dallas Morning News, 12/12/03)

By Katherine Morales, Staff Writer
The Dallas Morning News
Published December 12, 2003

Rasha Kawar's body "danced" as she sat at her dining room table late one afternoon.

It does that sometimes when she's excited, Rasha explained.

Her friend Marisa Kamstra brought a dog to Rasha's house.

The puppy twisted on the floor and ducked behind the sofa, antics that made the two girls squeal with laughter. But the stimulation made Rasha lose some control over her muscles–an occurrence she affectionately refers to as "dancing."

Her slender arms twisted beneath straps she uses to hold them to her wheelchair.

"My body isn't listening to me," she said.

With a little help, she situated herself back into her wheelchair and gained some control over her uncooperative muscles.

She tilted her head back and smiled at her mother, Laila Kawar–her best friend and constant advocate.

At 9, Rasha strives for independence like any girl her age. Ms. Kawar, a single mother, said because Rasha's body works differently, she has to work harder and constantly adapt to changes.

Complications at birth left Rasha with cerebral palsy, a condition that has caused her impaired motor movement–something she has worked for years to improve so she can be more independent.

"We look at her differences as typical. Everybody is different in one way or another," said Ms. Kawar, 43. "She's still a little girl, but she is learning how to be an advocate for herself."

Independence, it seems, isn't the only thing Rasha is determined to achieve.

Opinionated and outspoken, Rasha's desires sometimes differ from her mother's. Like with her arm straps. Ms. Kawar hated the idea of strapping her daughter's arms to her wheelchair, "but Rasha insisted on it."

Rasha said it helped her control her body. Some of her therapists suggested she learn how to crawl, an idea she rejected.

"I want to walk," she said.

Now in third grade, she attends mainstream classes at Cottonwood Creek Elementary in Coppell. The tools she uses in class are a little different than pencil and paper, (she uses a laptop), but her goals are as lofty as any of her friends'. Her mother says the school and Coppell district have worked hard to meet her needs so she can be successful.

Rasha said she wants changes in the way society views and treats people with disabilities.

Her latest project is overhauling bathroom accommodations on airplanes.

"I went to Israel last summer," Rasha said. "And when we came back, I needed to go to the bathroom."

Rasha spoke slowly, carefully choosing her words. "And the bathroom was like…the size of a computer."

She and her mother struggled in the cramped space to help Rasha out of and back into her wheelchair.

"It was very hard," Rasha said. "I bumped my head like 100 times."

When they finally returned to their seats, Ms. Kawar was in tears.

"Rasha told me not to worry and that she would do something about it," Ms. Kawar said.

Rasha decided to write the president and the airline to tell them about her ordeal.

"They wrote me back," Rasha said.

But the response, she decided, wasn't specific enough about when the bathrooms would be fixed.

"I'm writing another letter," Rasha said.

She also submitted a resolution about accessible bathrooms on planes at the Coalition of Texans with Disabilities Conference in Houston this year. It was overwhelmingly approved.

She reasoned that if her friends don't treat her any differently, why should airlines?

At school recess, Rasha is followed closely by a swarm of girls–all her good friends who usually spend time at her house during the week.

Rasha said she couldn't count how many friends she has.

"A hundred?" she joked.

In class, she has an aide to help her with some things, but mostly, she prefers to work alone.

Crystal Stipes, an aide who helps Rasha at home, said Rasha wants to try everything.

"When she wants to do something, she does it," Ms. Stipes said. "I've known her since she was 4 years old and spoke only a few words, and now she's into everything."

Like many parents of children with disabilities, Ms. Kawar said she initially went through a grieving process.

"Denial, guilt, blame, fear," she said. "I felt it all."

Some of those emotions, particularly fear, she said never really go away because changes in Rasha's body often creep up unexpectedly. Two years ago, she had a sudden onset of severe involuntary muscle movements that would wake her 20 or 30 times in the night.

"She couldn't sleep, and I would go into her room and try to hold her so she could sleep, but even I couldn't because the movements were so strong," Ms. Kawar said.

Those movements finally dissipated, she said, but the event scared both of them.

Ms. Kawar said these fears made her overprotective of Rasha.

"I would do everything for her because I felt that is my responsibility as a parent," Ms. Kawar said.

Through conversations with other parents of children with disabilities and by attending workshops, seminars and classes, she said she was able let go of some of her fears.

"It helped me not to be so worried about her future," she said. "I want her to be able to do whatever she wants to in life, and I want people to see beyond her wheelchair."

Next year, Rasha plans to read a poem at the opening ceremony of Inclusion Works, an annual workshop focusing on education issues for students with disabilities.

Poetry and stories about the importance of inclusion are Rasha's favorite subjects to write about. Someday, she said, she wants to publish her poetry.

"My favorite sentence," she said, "is I can and I will."

Reprinted with permission from The Dallas Morning News.

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