Fighting for a cause

“What about him?” asks Bridget Kinney pointing to the state representative’s picture in the roster book.

Along with around 10 other Missouri citizens from Self Advocates for Independent Living, a group from St. Louis with Down syndrome, she traveled to Jefferson City during the spring legislative session to advocate for disability issues.

“He was very helpful last year getting funding,” Rene Powell says as they sit in the Capitol cafeteria. She leans toward Kinney as she listens intently to the next question.

Earlier, Powell forgot to pay for her salad. In crowded places, it is common for her to forget her location or what she is doing. The confusion lasts only an instant. Luckily, Powell knew the cafeteria manager and explained the situation. She paid for the salad. She was not embarrassed. She was engaged in the conversation.

“Who’s that?” Kinney says pointing at another picture.

“She’s really awesome, really assertive,” Powell immediately replies.

Powell has been a member of the Governor’s Council on Disability since 2003, so she is familiar with the legislators. She especially enjoys working with members of this Down syndrome group. They are participating in the Legislative Education Project — an effort to educate people with disabilities about the legislative process. Powell admires them for the organization and hard work put into their advocacy.

However, while Powell admires other advocates, her own work as an advocate is substantial. Assisting the various groups that take part in the Legislative Education Project each week is only a fraction of the work she puts in. Powell attends hearings and extensively researches public policy.

In addition, she speaks with legislators about bills and issues. No politician brushes over topics with Powell. “Catch ’em with their feet in their mouth,” reads a tip on Powell’s business card, which she explains is in jest.

Without hesitation Powell walks to the House floor. “I need to speak with Rep. Deeken,” Powell tells the doorman of the Chamber. Powell waits in the hallway outside the chamber doors. Less than a minute later, Bill Deeken, R-Jefferson City, appears.

“What’s happening with the bill?” Powell asks.

“I’ve realized I was being a little stubborn,” Deeken says. He further explains some changes made to the bill. Nodding her head now and then, Powell listens to every word. Later that afternoon, she requests a copy of the revised bill.

“I need to read this. I might not like the changes,” she says, flipping through the pages.

Putting in six to eight hours a day, Powell typically works Tuesday through Thursday at the Capitol during the legislative session.

Rob Honan, executive director of the Governor’s Council on Disability, witnesses Powell’s involvement in state government.

“She has an outstanding work ethic. She is doing this on a volunteer basis. There is no financial reward for her. She’s down here because she believes in the cause,” he says.

Powell hopes to one day be remembered for her contributions to disability rights. She wants to teach the world that every level of competency has value. Equality is something she applies to everyone in her life, sometimes literally.

One of Powell’s favorite things to do is interact with her two nieces, Cadence, 2, and Sydney, 1. While all three were at the hospital for a family member’s surgery, Powell got on the floor and crawled up and down steps with Sydney.

“I like to get on their level,” Powell said laughing. “I like to treat them not just as kids, but actual people.”

Powell’s fight for equality and inclusion continues at her home in Paquin Towers, a low-income housing residence for people with disabilities in Columbia. Powell works to get everyone in the 15-story building registered to vote. She also is in the process of creating a citizens’ emergency response team for the building. Her advocacy work is so well known that some people at Paquin Towers call her “Ms. President.”

Wanda Jesse lives at Paquin Towers. Jesse said Powell can often be spotted discussing politics with neighbors in the main floor lobby while Powell waits for a ride. She does not drive.

“They ask her, ‘What happened to the bill?’” Jesse says. “She gets along with all of them.”

Firestorms in the brain

Powell has had epilepsy since she was 14, so she understands the need for her advocacy first-hand. Powell describes her seizures as physical firestorms in the brain. Some seizures are so severe they have thrown her shoulder out. Others are minor and cause a momentarily lack of awareness, as in the Capitol cafeteria when she forgot to pay for her salad. There is no known cause for her epilepsy.

Powell had three neurosurgeries in 1996 and one in 1997 to try to decrease the frequency of her seizures. The surgeries worked as a process building upon one another. First, her brain was monitored to locate and coordinate the source of the seizures. Then during the final operation, surgeons removed some of the brain tissue.

A year ago, Powell had “a pacemaker for the brain” placed in her chest. The pacemaker is a physical generator with a wire that connects to a nerve in her brain. The generator stimulates the nerve every five minutes and helps even out brain activity.

The controlled internal lightning causes spasms in her laryngeal muscles. It causes her voice to sound as if she instantly contracted laryngitis. After five to 10 seconds, her voice switches back to its original tone.

Powell uses a black Velcro electromagnetic wristband on her right arm to swipe against the pacemaker inside her chest to turn the generator on and off. The wristband looks like a watch.

Tiffany Powell, Rene’s youngest sister, remembered her family being extremely nervous about the surgeries. The psychologist in the St Luke’s Hospital waiting room in St. Louis could only provide limited comfort to Rene’s family. The anxiety level remained high for Rene’s parents and four younger sisters.

“She handled it better than the rest of us. It didn’t appear she had any worries,” she says.

An inquisitive mind

Vicky Riback Wilson, a friend of Powell’s, did not know she had epilepsy until a few months after meeting her. Her epilepsy came up in one of the many conversations the two had while working on Wilson’s campaign in 2002 for re-election as state representative. Wilson was a state representative from 1996 to 2004.

“It came up just as a fact,” she says.

Because Powell does not drive, Wilson would often give her rides to various political functions. Every week Wilson would pick her up to go campaigning door-to-door.

“We became door-to-door buddies,” Wilson says. She relied on Powell’s insightfulness and up-to-date information on a variety of topics. From Powell, Wilson says she learned about the scope of disabilities that exist in society.

“Every time we got together it was a good discussion. She uses a lot of her time to read a variety of things to analyze what’s going on.”

Powell’s research days and inquisitive mind date back to her childhood in Liberty, Mo. She grew up in a house on 7 1/2 acres surrounded by woods and rocks. Rene explored for fossils a majority of her time.

“I considered myself a young archaeologist,” Powell says laughing. Now she explores the Internet.

Powell uses her research and knowledge to back up opinions that she is not afraid to voice.

“I don’t ever remember a time when she backed down,” Tiffany Powell says. “There is nothing you can do to make her follow the crowd. She has the ability to be herself no matter what.”

Tiffany remembers Rene never being shy to argue about politics with their dad.

“She would argue things to death with my dad. She is very secure in what she believes.”