People with disabilities don't want to be defined by them

By Lorraine Kee
Of The Post-Dispatch
Monday, Sept. 4, 2000

"We're not only going to act and say things, we're going to do things with our bodies." -- Katie Rodriguez, in rehearsal for the DisAbility Project.

Some "walkies" see the chairs on wheels or the awkward crutches or the cumbersome braces. They get impatient when the conversation comes out haltingly or hard to understand. Or they notice the limp or the way the muscles have curled hands into clenched fists, and that's all they see.

They are people with disabilities but their disabilities do not define them, say members of the DisAbility Project, a theater ensemble of people with and without disabilities.

Katie's story

Katie Rodriguez is dressed three hours before her 4 p.m. wedding ceremony on a pretty May day.

So, not long after the 250 guests take their seats, she waits behind the closed double doors to the wedding hall. Her oldest brother, Robert Rodriguez, is giving her away for her father, Joseph, who is deceased. Robert stands by her side.

But Katie Rodriguez, behind her veil, is staring at the door or at nothing in particular. Her eyes are bright with excitement.

Her white shoulders sparkle from body glitter. Not once on this day does her mind drift to thoughts of the car accident that left her paralyzed 10 years ago -- the same year former President George Bush signed the Americans with Disabilities Act.

Before the wreck, Rodriguez, now 35, was quite the "Barbie Girl." Her DisAbility Project piece "Go Figure" attests to that. Rodriguez wrote the piece, but it was Rich Scharf, a fellow actor and friend, who spun it into a script.

In "Go Figure," Scharf plays the Rodriguez who thought she had lost her femininity after the accident.

"I enjoyed dressing up and all that went with it," he says onstage before Rodriguez joins him there to speak for herself. "From my first pair of pantyhose to my bouffant hair, shellacked in place with half a can of Aqua-Net. Remember how popular big hair was in the '80s? The bigger the hair, the closer to God -- and ith the makeup to match."

In the end, Rodriguez realizes her character is not defined by her chair -- that it is only a conveyance.

Outside the closed double doors to the wedding hall, that Rodriguez is long forgotten. The only sound is Rodriguez's eager flicking of the joystick on the right arm of her wheelchair.

Click, click.

Andrew's story

The applause had hardly died for a DisAbility Project performance at Christ Church Cathedral in downtown St. Louis when Andrew Lackey and his family started making their way to the door.

That June afternoon, Lackey was graduating from Horton Watkins High School in Ladue. The performance went well, judging by the warm applause from the congregation afterward. Graduation went off without a hitch, nearly.

The soon-to-be graduates assembled in the school gymnasium before the ceremony and are directed to head outside to the stage. But at the door, Lackey meets with an immovable obstacle: a handful of steps. A group of classmates quickly lowers his wheelchair to the ground. Lackey circles the track and takes his place in the procession. The stage, where he picks up his diploma, has a ramp. Two days later, he throws a graduation party. About 20 classmates come, none with a disability.

It will be an eventful summer for Lackey.

He will turn 19. He will attend a national theater workshop in Maine. He will compete in an equestrian event in Atlanta -- many of the ribbons and trophies he has won since he was 31/2 years old are displayed in a bookcase in his bedroom. He will be a counselor at vacation bible school at the Salem United Methodist Church in Ladue.

And in the fall, he will start Southern Illinois University at Edwardsville, where he will have a double major in political science and theater. For that occasion, Lackey will break in a new power wheelchair.

His mother, Pat, is looking to hire personal care attendants for Lackey while he's away at college. The attendants will do what she has done for the past 19 years, help Lackey dress in the morning and help him prepare for bed at night. In the fall, she will worry about whether he's getting enough to eat, whether he's dressed warmly enough, whether the campus sidewalks will be shoveled enough in winter.

Cerebral palsy, it seems, doesn't slow down Lackey. He is a typical teen-ager, though his room is neater than most.

"There's nothing on the floor," he says, offering a beguiling smile before noting that he rarely drops anything there because he can't pick it up. "You have to go to my brother's room to see that."

Lackey sees himself as funny, nice, hardworking, smart and friendly. Even when others don't see past his wheelchair.

"What's wrong with you?" a few have asked.

Nothing.

Some servers in restaurants will ask his mother what Lackey wants to eat, as if a physical disability is synonymous with being developmentally delayed. Lackey speaks for himself.

"Disabilities are as individual as the person," Lackey says. "I don't have cognitive problems. I have spasticity of the limbs."

Says his mother: "I want people to see an intelligent person with a great sense of humor and a real kind disposition."

Unlike Rodriguez, who misses dancing, Lackey says he can't miss what he never had. He was born with cerebral palsy.

The only thing he missed in school, he says, was physical education. But even that, he says with a smile, loses its luster for most students by high school.

"I'm comfortable with who I am," he says. "I'm cool."

Nuptial preparedness

On the back of Rodriguez's chair hangs a white satin pouch made by her fairy godmother, Jan Hinkenbein. It's a perfect match for her wedding gown: satiny, lacy, white and sparkling with pearls and sequins. To find a gown, Rodriguez called about 15 bridal shops to see if they could accommodate her wheels.

Since her recovery from the car accident, Rodriguez has learned to call ahead always and closely question whomever answers the telephone at restaurants and stores. Often, they claim their places of business are accessible. Often, they are not. One restaurant employee offered to hoist her chair up a step. No thanks, she told them. Rodriguez prefers to get around on her own power.

Click, click.

Thea's story

When Joan Lipkin asks Thea de Luna if she will take on a speaking part in "Coffeehouse," de Luna hesitates and not because she just recently joined the company.

De Luna, 43, is at a different place from Rodriguez and Lackey, both of whom seem so self-assured.

De Luna had a stroke eight years ago. She still has some paralysis on her right side, and she suffers from aphasia, which slows her ability to comprehend words. When that happens, she starts to feel rushed and flustered and freezes up.

"I'm not as comfortable with my disability," she says.

This spring day in rehearsal, de Luna's voice is barely audible and she stumbles over the words. You have to project so the audience can hear you, Lipkin cajoles. The Project has a performance coming up at St. Louis Community College at Forest Park for its ACCESS Office awards ceremony. The thought of speaking in front of a crowd makes de Luna tremble.

But on the day of the ceremony, her voice is stronger, her speech less halting. A friend helped her retype, in bigger letters, her lines. That way she readily spots the words on the page.

In de Luna's sun-brightened Central West End apartment, watercolors hang on the wall. On an easel, there are more works in progress.

She points to a set of earth-toned dishes on a ledge above her kitchen cabinets.

"I did that before the stroke," she says.

She was a manager for a major parcel delivery company in Chicago earning upward of $35,000 a year and working toward a college degree in art therapy -- she has dyslexia and wanted to teach children with disabilities -- when she suffered the stroke on Christmas Day 1992. She was 35.

She spent three months in a hospital and months afterward in rehab. She considered moving into a nursing home but instead chose to depend on the kindness of friends. These days, she gets by on about $13,000 a year in Social Security and workers' compensation benefits.

De Luna never thought she'd be in this place -- despite a childhood of horrors, including surviving incest. No one wants to think they'll be disabled someday. She was on her way to pulling together a fragmented life when she had the stroke.

This is not the life she imagined.

"It has been an ongoing thing," she says. "My whole life I've had to be different, watching what I do and walking around on eggshells sort of. Because of that, I always had a problem with fitting in. That's been the daily essence of my life. I wanted to fit in."

But she is fighting back. On her kitchen table, three letters are stacked. The letters are addressed to three airlines, telling of her treatment by employees -- some good, mostly bad -- during trips.

In those instances, she believes she was ignored and dismissed by airline employees and the driver of an airport shuttle.

"The aphasia is particularly troublesome when I'm under pressure to speak up to defend myself," she says in the letters.

She couldn't find her words that day. But she's trying to find her courage now. The letters, and taking a speaking role in the theater project, are evidence she won't let things slide anymore.

"It felt pretty good afterward," she says of her speaking part.

Accessible bliss

Of the 15 bridal shops Rodriguez called, nine weren't accessible. Workers at one shop offered to bring dresses to her in the basement.

No thanks, she told them. This was too special an occasion to spoil by spending it in even the nicest of basements.

She went to the other six. At Blustein's Bride's House at 1010 Locust Street, she found what she was looking for: accessibility and a dress. The store even had a vinyl chaise lounge where she transferred to from her chair, so she could be fitted for her fairy-tale gown.

Accessibility had been a consideration when she chose the Doubletree Hotel in Chesterfield for her wedding and reception dinner and a nail salon for her and her wedding party. Businesses need to do a better job of meeting the needs of consumers with disabilities, but people with disabilities must also communicate their needs, Rodriguez says.

The doors open.

Click.

E-mail: lkee@post-dispatch.com Phone: 314-340-8255