Wednesday, November 23, 2005

Designs for better access

TimesLeader, originally uploaded by rsdscrpsnews.

Posted on Tue, Nov. 15, 2005

A DAY IN THE LIFE: Alaine Chang

Designs for better access

Architecture student’s goal is to be educator who would help future designers see needs of disabled.


WILKES-BARRE – She’s not asking you to walk a mile in her tan Velcro sneakers. But she wants you to think about it.

She’s not asking you to roll a mile in her wheelchair. But she wants you to consider the challenges in getting around that way – especially if you happen to be an architect.

“The world is by and large inaccessible,” Alaine Chang, who struggles with reflex sympathetic dystrophy, said recently.

The 51-year-old has become an unlikely architecture student who hopes to change the way we think about buildings.

“Designers should be talking to people with all different facets of disabilities,” she said.

After suffering nerve damage in one of her arms eight years ago, Chang developed the chronic pain disorder also known as complex regional pain syndrome.

It’s the result of a sympathetic nervous system gone haywire.

Following an injury, sympathetic nerve impulses cause blood vessels in the skin to contract, forcing blood deep into muscle tissue to minimize blood loss. Ordinarily the sympathetic nervous system shuts down within hours of an injury, but in Chang’s case that hasn’t happened.

An inflammatory response causes more pain, which in turn sparks further inflammation. Her legs have swollen, the skin on her hands is cracked, her vision is affected, and her doctors have told her that her condition will only worsen.

Chang’s disability has become both obstacle and motivation.

She recalls a trip to Philadelphia with her husband. They spotted an Asian grocery store and they both wanted to go inside to take a look. Her husband could, but Chang, in her wheelchair, couldn’t make it.

In 1990, the Americans with Disabilities Act was signed into law. It requires government buildings, services and programs to be accessible to those with disabilities, but 15 years later local governments are still working to cut ramps into sidewalks and retrofit older buildings.

And, of course, the world of small grocery stores, cafes and even her doctors’ offices is a different matter, Chang said.

Her life is a maze of narrow hallways, doors that aren’t automatic, and doors that are difficult to open, and that’s something she wants to change.

Two years ago in September, Chang returned to school at Luzerne County Community College to begin studying architecture.

This semester she’s enrolled in a construction material class that recently visited the downtown theater project to take a tour and sketch the structure.

Sitting in a coffee shop surrounded by her much younger classmates, Chang acknowledges that she has a long way to go before she achieves her goal.

She plans to get an associate’s degree in architecture and engineering and then go on for a master’s degree – one day she even hopes to be in a position to teach the next generation of architects.

Sipping a diet soda, she describes a row of dominoes as an analogy to explain her desire to be a teacher.

By becoming involved as an educator she hopes to get design students to consider the challenges of the disabled.

That’s like flicking the first domino, she explains, a small gesture that will create momentum and radiate change.

“It’s something that needs to be done,” she said, adding that “retirement’s far overrated. It’s boring.”

In her first go around with college, she got a political science degree from Wilkes University and then ran a dance school and later a retail store.

But that’s not something she relishes discussing.

“That’s the past, and now is now,” she said.

This semester, she’s thrown herself into drawing and detail work that has strained her eyes and left streaks of blood in her notebook.

She normally wears thin white gloves to protect the skin on her hands, made delicate and prone to splitting by her disorder.

Pulling a notebook out of a bag slung on the back of her wheelchair, she flips through pencil sketches of construction sites.

“Drafting is nasty,” she said. “On the computer it’s OK, but drafting with pencils and rulers when your hands are bleeding is not fun.”

Next semester she plans to take two classes, but she doesn’t really know when or where she’ll end up in a graduate program.

She’s dedicated, but her kids think she’s crazy.

A grown son and a daughter hundreds of miles away in Boston and New York can’t understand why their mother, who has nearly as many doctors as fingers, is back in school.

“They think I’m insane,” she said.

There’s no time to debate. It’s early afternoon and time for her class to meet at the construction site.

Along with her classmates, Chang, in her wheelchair, rolls to the half-completed theater. She’s concerned the site may not be wheelchair friendly, but that’s a minor blip on the way to her ultimate goal.

“You can overcome practically anything, the only thing you have to do is want to,” she said.

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