Disabled Find Their Own Voices To Advocate
Some McLean County residents with disabilities are doing more than simply fighting to live independently. They are finding their voice to help others overcome the same challenges they face.
Rob Ballantini of Bloomington was undergoing neck surgery following a recent car accident when doctors discovered at age 30 he was diagnosed with Parkinson’s disease, stage 4. That’s the stage in which sufferers typically have to give up their independence.
"My motto at the time was I was not going to let it defeat me, but I was going to defeat it."
So he had to give up a job he loved as a cook at a Bloomington restaurant.
“It was a passion,” Ballantini said. “My mother said I always got my cooking skills from her side of the family because her dad was a cook.”
That was 24 years ago. Ballantini has since married and divorced twice. Eight years ago he became wheelchair bound after his Parkinson’s advanced to stage 5. Then he noticed a new layer of challenges as he tried to navigate the sidewalks near his apartment at Phoenix Towers, a low-income housing project in downtown Bloomington.
“It’s just very dangerous, not only for myself but for everyone,” Ballantini said.
He led GLT on a tour of sidewalks he traverses regularly, including one on Center Street north of downtown. He stops at a sidewalk that has a four-inch deep, four-foot wide gap in the concrete.
“I don’t ride over it. It’s just too bad, I could easily damage the wheels,” Ballantini said. “When I come to this point, I always go in the grass.”
Ballantini never saw himself as an advocate, but he unwittingly became one. He said he’s held multiple meetings with Ward 6 Bloomington Alderman Karen Schmidt and several other city officials. He said the city has since made considerable improvements to the sidewalks and plans to do more work in the spring.
Ballantini said he’s not expecting miracles, but he’s pleased with the progress that others have also noticed. He recalled a conversation with a nurse during a recent hospital visit.
“Now I can place my 3-year-old in a stroller now because there’s been so much improvement,” Ballantini said.
He has also expressed concern to city officials that many downtown businesses are not wheelchair accessible. He recalled at one downtown bar, employees had to lift his chair to get through the door.
“That’s not something I asked for,” Ballantini said. “I said to them, ‘You need to be ADA (Americans with Disabilities Act) compliant.’”
Bloomington City Manager Tim Gleason said the city appears to have made considerable strides in recent years to improve accessibility. He’s been on the job since last July.
However, he acknowledges the city can do much more.
“It’s a conversation we are very much interested in,” Gleason said. “I think there’s a story to tell when we talk about sidewalk improvements and ADA accessibility that the city is doing far more than what I think people realize, which is not suggesting that we are satisfied with how much we are doing.”
He noted the city has also made curb cuts at several intersections to enable wheelchairs to cross more safely.
Ballantini said he’s also working to bring a Parkinson’s Walk to Bloomington-Normal as a fundraiser for the Michael J. Fox Foundation. He’s been to similar walks in Chicago, Milwaukee and New York City.
LIFE Center for Independent Living has twice honored Ballantini as its advocate of the year. Ballantini said he never sought the recognition. He was just doing what he felt needed to be done.
He acknowledged he knew next to nothing about Parkinson’s when he was first diagnosed, other than Michael J. Fox and the now late-Muhammad Ali. Since then he’s learned so much more about it and, most importantly, learned to live and thrive with the illness.
“When I found out I had Parkinson’s almost 24 years ago, my motto at the time was I was not going to let it defeat me, but I was going to defeat it,” Ballantini said. “Almost 24 years later, here I am.”
'I Should Be Dead'
Rose Cook of Bloomington said she doesn’t understand how she is still here.
Years after the Army veteran came home from Saudi Arabia where she helped cleanup efforts following the first Gulf War, she fell in her home. Doctors rushed her to the hospital and determined she suffered a brain aneurysm.
“They still don’t know why it happened, because in all reality I should be dead,” Cook explained. “When I first came home from the hospital I couldn’t walk, talk, eat or see.”
After years of surgeries and rehab, Cook has regained all of those capabilities, though she still doesn’t recall any of what happened.
“I really don’t remember,” Cook said. “There’s a year before and a year after (the aneurysm) that’s like a blank. I don’t even remember being pregnant with my youngest daughter.”
Cook is no longer able to drive, but said there’s one important feature she still has.
“A vehicle no, but (driving) people crazy, yes,” she quipped. “Hey, I haven’t lost my sense of humor through all this.”
As Cook, 52, slowly regains her independence, she recently moved out of a nursing home and into low-income housing on Bloomington’s west side.
“I’m the type of person where if I want something done, I’ll do it,” Cook declared. “For the longest time I had a sign on my walker which said ‘Have walker, will travel.’”
Cook said she sometimes travels with a wheelchair because she said it’s sometimes safer as passersby are less likely to notice a walker.
Cook said she’s starting to feel her own voice as an advocate for those with special needs.
“Speak up, let your voice be heard,” Cook said. “Let your concerns be heard, because unless you say something, other people won’t know what’s affecting you. Use your mouth."
Cook said she notices a clear difference between businesses that call themselves accessible and those that are disabled-friendly. She notices the contrast most often in public restrooms and in department stores.
“They make these nice big aisles to walk down and then they think, ‘Hmm, we have a nice aisle, let’s put (sales) racks in the middle of it.”
Gleason said the city can’t require businesses to make certain ADA improvements unless the business makes renovations topping $15,000.
“Even those instances where the business owner decides not to do that much invest that would trigger ADA components, we can still suggest, strongly propose that they do things to the business.
“It can be as simple as a ramp.”
Gleason said if cost if the major impediment, the city would be willing to explore cost-sharing agreements that could include foundation grants.
The onus of helping the disabled assimilate into the community not only lies with municipal governments, it also lies with employers.
Courtney Hummel of Normal has been legally blind since birth. Since age 7 all she could see are shapes and some movement. She also has a mild case of cerebral palsy on the left side of her body. Also, in the last 10 years, she started getting migraine headaches which she said are now largely under control.
Despite those obstacles, the only thing keeping her from holding down a job were employers leery of hiring someone who is blind. Hummel said she applied at lots of places.
“Places where I wanted to work,” Hummel said, “they were like, ‘You are blind, you can’t do it.’
“They didn’t say it directly but you that that’s what they were thinking it was discouraging."
United Cerebral Palsy helped her with the job application process and she eventually landed a gig at Wild Berries, a restaurant in Normal which closed a short time later.
After months and months of job searching she got a chance to meet Scott Allen, the general manager of Applebee’s restaurant in Bloomington.
“I first met her and I knew right away, I liked who she is as a person, so that made it easy for me,” Allen said. “We were going to be able to work around whatever we needed to make sure we have jobs for her to do.”
“It was awesome, he was just very willing and accepting,” Hummel recalled. “He said, ‘Sure I’ll hire you. You have a disability, I don’t care.'"
Hummel works three days a week at the restaurant placing silverware into napkins to set the tables for that days’ lunch and first making sure the utensils are clean.
“I just take my fingers over and I just slide them up and down,” Hummel said, adding she’s not concerned about handling knives she can’t see.
“I’m quite all right with it.”
She’s accident free after three years on the job.
Allen said staff also double-checks to make sure its silverware is clean.
“We make sure we have thoroughly looked through the silverware to make sure there’s still no food still stuck on them,” Allen said. “That obviously is something people would think about.”
Hummel isn’t the only disabled worker on staff at the Bloomington restaurant. Allen also hired another man with cerebral palsy who works in the kitchen and as a host.
Allen said these workers build morale and hiring them is the right thing to do.
“I’ve always been raised to just be comfortable in knowing that I want to give everyone equal opportunity,” Allen said. “I generally care about people, so for me personally, I wasn’t really looking past anything.”
Hummel lives alone with a guide dog and has care workers come to her apartment in Normal. In her apartment, you’ll find four Alexas, one for each room. When she needs to call someone, she just tells her iPhone.
It’s virtual assistants and other technology that she said makes living with blindness far more manageable than it was even 10 years ago.
“Oh my God, it would be so hard for me,” Hummel said. “I wouldn’t be able to take a pen and write down because my handwriting is not legible.”
But there are ways things could be better. That’s where her newfound role as an advocate has come into play.
She worked with the LIFE Center for Independent Living to move from the third floor to a first-floor apartment and to get more audible crosswalk signals at intersections in Bloomington-Normal. She said she’s encouraged to see more of them, but there are nowhere near enough.
She has fought to get the visual aid at the College and Towanda avenue intersection.
“They haven’t done anything about that one yet,” Hummel said. “That’s frustrating."
Advocates See Progress, Want More
Rickielee Benecke, director of the Bloomington-based LIFE Center for Independent Living, said the city of Bloomington has started to “come on board” with a willingness to make change to help the disabled community. She added Normal has been far more disability friendly.
“The Town of Normal over the years has been a role model of sorts within McLean County to make things accessible and to make improvements and to go above and beyond whenever needed,” Benecke said.
She cited several examples of improved disability access in recent years at the Normal Public Library and Advocate BroMenn Medical Center. She said the town has also hosted multiple presentations in recent years instructing its staff how to better help the disabled in the community.
Andrea Kindseth, a community reintegration advocate for Life CIL, said the association hosts advocacy classes to help its clients find their voice in seeking the help they need, not only for themselves, but for others.
“We try never do to things for people that we work with," Kindseth said. "We want to inspire them to do as much as they can for themselves, providing them with different resources, tools, education, things like that that allow them to be more independent."
'Yes, You Can Make It'
As Cook ambles around her Bloomington apartment with the help of a walker, she is grateful for the advocacy support, but the last thing she wants is sympathy.
She doesn’t get to see her family often. Her parents still live in Bloomington, while her two oldest children are grown, her adult son Sam died two years ago. She said doctors will have no explanation what caused his death. Her youngest daughter lives with family in California.
Despite the hardships that have fallen so randomly and inexplicably upon her, Cook offers an answer to the question, "Why me?"
“What I’ve come up with is because of my strong will and my perseverance is to show people that yes, you can make it," Cook said. "The best way to get me to do something is to tell me I can’t do it.”
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