Navigating Life With A Mental Disability

The bike was a prime candidate for the junkyard. Dents and dirt covered the red aluminum frame. The chain was rusted, the handlebars bent backward at an awkward angle. Chunks of mud and a dirty sock clung to the pedals. The derailleur hanger was broken, the seat was torn, the lights and computer had vanished. The orange panniers, which contained a raincoat and prescription eyeglasses, were also missing.

This wasn’t the first time Jon Kruse’s bike had ended up in the repair shop at Tryathletics, although it was the first time the damage wasn’t his fault. Kruse’s bike had been stolen from the bike rack at Schnucks around 5:30 p.m. on April 24.

“I can’t understand why anybody would do such a low-life thing like that,” says store manager Bill Crisco. “We looked everywhere.”

After several weeks, the 62-centimeter cherry-red Kona Jake was found in Hinkson Creek. On May 19, Kruse posted on Facebook: “well it a very good day for me today i get to get my old bike back today that was stolen from ne.”

Those who know Kruse well understand the excitement behind each of his misspelled words and grammatical errors: Kruse’s bicycle is his transportation. Due to a mild case of cerebral palsy, his reflexes are too slow to drive a car safely. He’s considered riding the bus, but getting from his condo off Old Highway 63 to work at Schnucks involves multiple stops and more than an hour of commuting. The 30-minute bike ride is preferable.

“I wish buses would go where I want them to go,” he says, but he happily rides his bike instead.

Store Locator: Diagnosis

Once upon a time, a pediatric neurologist told Lowell and Leslie Kruse that their son would never ride a bike. At the age of 1, young Jon wasn’t crawling or walking, and his nervous system seemed to be developing slowly. When he was old enough for school, he was placed in special-education classes, but no one knew exactly why. Eventually, the Kruse family moved from Minnesota to Rochester, N.Y., where they saw a new physician. The doctor diagnosed him as mentally retarded.

“We went with that,” Leslie says. “It made a difference in how we treated him; we were harder on him — I wanted him to understand, I wanted him to learn.”

That was in 1976. Language has changed since then, and today most disability advocates do not use the phrases “mentally retarded” or “mentally handicapped.” “A ‘person with a cognitive or intellectual disability’ is preferred terminology,” explains Aimee Wehmeier, executive director of Services for Independent Living. The person must be placed before the disability.

Even so, Kruse doesn’t mind what people call his condition. He does, however, become irritated if people use “retarded” in an incorrect context. He says people around him often use the word to describe situations or ideas, not realizing that he is actually mentally disabled.

“I just let it go,” he says. “I know they’re not talking about me. How do you know if someone is handicapped?”

Kruse’s IQ is somewhere in the 55 to 85 range; 100 is average. At 42 years old, his reading level is about that of a fourth- or fifth-grader. He’s open about his disability. “I can learn like you can,” he says. “But it takes me longer to learn.”

 

Stocking The Shelves: Growing Up

The same doctors who told the Kruses their son would not learn how to ride a bike also said that he’d never hold down a steady job or live on his own; Kruse became even more determined to live a normal life. “The thing I don’t like is when they say ‘You can’t do that,’ ” he says. “ Yes, I can. I’ll prove I can do it.”

The first time Kruse felt truly independent was as a Boy Scout. During campouts, he had to fend for himself. “Mom and Dad were not there, and I had to make decisions by myself,” he says. Kruse became an Eagle Scout in 1986. “Scouting helped me live on my own.”

He moved to Columbia in 1987 to attend Advent Enterprise, a vocational school for the disabled. He lived in a rough neighborhood on Garth, which proved disastrous on a number of levels. The occasional gunshot and untrustworthy neighbors made him nervous.

But Kruse was also part of the problem: he didn’t quite understand what it meant to be independent. He wrote bad checks, he dressed poorly and his apartment was filthy.

“The first 10 years were awful for us,” says Leslie, recalling Kruse’s frequent stressful and upsetting phone calls. But Lowell keeps it in perspective: “He was like most people in their 20s. He was a typical young man going out on his own.”

Finally, on Kruse’s 30th birthday, Lowell and Leslie decided to buy their son a condominium. And just like that, everything changed. “I hit 30 and said the road I’m going down now will not improve me,” Kruse remembers. “I have to join the adult world. I have to plan for retirement, be a good citizen, go to work.”

Today, Kruse is financially responsible, he dresses well (when necessary), and his home is impeccably clean and uncluttered — he even changes his sheets once a week. “My dad always told me: Messy house, messy mind,” Kruse says. “If my house isn’t clean before I go to work, then that’s all I think about. You have to have chores done before you can go out and have fun.”

Kruse says he likes living by himself: “I don’t have to come home if I don’t want to come home. I can leave when I want to.” He likes flexibility in his schedule. “My life is not set,” he says. “If I have the money, am I in the mood to stop and eat? Am I in the mood to go to the library and read a magazine? Am I in the mood to go see a movie? I just do what I want to do.”

Most often, doing what he wants involves watching television or DVDs on his 52-inch flat-screen TV or playing games on the computer. “Jon is at ease at home,” says Uwe Lochner, Kruse’s friend and colleague at Schnucks. “He doesn’t have to worry about anything. He takes care of himself very well.”

 

Price Check: Earning A Living

Advent Enterprise placed Kruse in several different jobs before he ended up at the Schnucks on Forum Boulevard in 1995. He’s been there ever since. “I like my job with the customers,” he says. “They’re so nice and friendly all the time. I see everybody that comes in, and I see everybody who comes out. We make them want to come back, so we have to be the friendliest we can be.”

The job is a good fit because Jon is a naturally friendly person (“He’s a very likable young man,” according to Crisco) and also because the store makes sense to Kruse — the milk is by the cereal, the pasta is by the tomato sauce and so on. He’s able to learn by doing, which is how he learns best. “I learn more by watching or hands-on training than in a book,” he says. But most importantly, “people are willing to be patient with me.”

Kruse approaches his work cautiously; he’s a bit fearful of making mistakes. “He needs constant direction,” Crisco says. “He’s not high-maintenance, and he does a good job, he just has to be kept on task.” But in the end, Crisco says “we give him as much trouble as we give anybody — I don’t mean that in a mean way. We don’t treat him any differently than anyone else. We set a standard and we want him to work at that standard. He’s capable of doing it.”

During his 15 years at Schnucks, Kruse has proven he is capable of many tasks. He started off working in the return-deposit section in the store but soon became a bagger, which involves packing groceries into bags and often loading them in cars. Kruse admits he does these tasks slowly. “I do it the best way I can do it; you can’t please everybody,” he says, noting that he’s always careful to place the appropriate items together in customers’ bags.

Kruse was later reclassified as a “utility clerk” in order to receive medical benefits. “Jon’s very appreciative of the fact he’s got benefits,” says Lochner, who describes Kruse as always early, dependable and self-sufficient. Kruse’s current title means more responsibilities, including lots of cleaning: cleaning the parking lot, check lanes, lobby, floor, restrooms, lunchrooms and more. He still continues to bag, which is one of his favorite responsibilities. According to Crisco, Kruse is one of the most important employees at the store because he takes care of customers — a responsibility Kruse doesn’t take lightly. “When people walk in the door, you don’t know what kind of day they’ve had, but it’s your job to make them feel better when they leave,” he says. “The ones I like the most are the ones who say ‘Why do you smile all the time?’ I’m happy with life.”

 

Special Offers: Extracurriculars

When Kruse is not at home or at work, he’s likely at a Mizzou athletic event; he attends nearly every home game of every sport. “Jon is the biggest Tiger fan in Columbia,” Lochner says. “He’s all about Mizzou; Jon bleeds black and gold.” Kruse loves the stadium atmosphere, watching the athletes, listening to the crowd, chatting with friends he’s made over the years.

“People around there are friendly,” he says of the fans and the athletic department staff.

The athletic department staff feels similarly. “Jon’s a friend, a genuinely kind and good person,” says MU Athletic Director Mike Alden, who first met Kruse at Schnucks many years ago. Not long after, Kruse had a flat tire on Stadium and Alden pulled over to help. They loaded Kruse’s bike in Alden’s car and drove to Tryathletics. “As we were driving, I got the chance to get to know him quite a bit better,” Alden remembers. Little did he know that Kruse would soon be educating him on volleyball rotations and softball strategies.

“He’s intense, in a positive way,” Alden says. “He’s very vocal, very supportive, very knowledgeable. The two sit together often at sporting events, and Kruse usually stops by Alden’s football tailgates — but no one considers that special treatment. “If he’s treated any differently it’s because he knows everyone in the department,” Alden says. “People care about him, they trust him. We don’t see any disability in him. We see him as a genuinely good guy, a good man. I’m speaking for the majority of the department.”

Kruse’s enthusiasm for the Tigers carries over into his home. The first floor of his condo might be decorated with a colorful assortment of lighthouses and birdhouses, but upstairs, Mizzou is the dominant theme. An autographed Chase Daniel jersey hangs in his study, along with signed baseballs, softballs, soccer balls and footballs, all of which mesh well with black and gold blankets, lampshades and pillows.

Kruse enjoys participating in sports as well. He’s a member of the Columbia Track Club and occasionally participates in local road races. Back in July, he ran the Break a Leg 5k in 36:21. “I came in first in last place,” he laughs. Nicknamed Kruzer, he also rides on bike trails when the weather is cool. “I enjoy biking a lot because it’s exercise. If I didn’t ride my bike, I’d be really big,” he says. At 6-foot-4 and 230 pounds, Kruse works at maintaining a healthy weight to prevent the scoliosis in his back from becoming too severe.

He enjoys golf, even if it means risking a ticket (he once received a warning from an MU policeman who told him golf clubs on a bicycle are considered weapons). Despite that violation, “Jon is very aware of the laws and the rules,” says Lochner, noting that Kruse has attended PedNet’s Confident City Cycling class.

Until recently, Kruse was a regular at Special Olympics Missouri; he competed in sports ranging from cross-country to golf. In 1995, with absolutely no soccer experience, Kruse made the Special Olympics soccer team that placed fourth in the world out of more than 100 countries at the 5-aside tournament in New Haven, Conn. These days, though, he is hesitant to compete because it might mean asking for time off at Schnucks.

“Work comes before pleasure,” he says.

 

Customer Service: Family First

Kruse credits his parents with helping him reach such a comfortable place in life. He says his strong morals have come from the examples set by Lowell and Leslie. “Most of my values come from Mom and Dad,” he says. “Mom and Dad always told me to help out people as much as I can and treat people like I want to be treated.”

He quickly adds: “Going to church on Sundays helps, too. Sometimes I have a better week when I go to church.” Kruse attends Grace Bible Church, often with friends. His faith plays a large part in his well-being and peace of mind, particularly in regard to his disability: “God wants everyone to be different.”

Kruse’s parents currently live in St. Joseph and make the 180-mile drive to Columbia often; Lowell, a former president of Heartland Health, often travels to Jefferson City for business and usually visits his son when he’s in the area. Kruse is also close to his brothers, Michael and Tim, who live in Kansas City.

“Family’s first for Jon,” says Lochner. “He loves visiting his family in Nebraska and helping out on the farm.” Working all day on his cousin’s cattle farm in Columbus, Neb., “helps me out,” Kruse says, adding that cutting hay and planting corn gives him a physical workout and allows him to spend time with his loved ones.

 

Check Out: Future Plans

Kruse plans to continue working at Schnucks until he can retire comfortably. “I want to be around positive people, people who make me happy,” he says. “I’m very happy with what I’ve accomplished and what I’ve done.”

He plans to stay in Columbia, a choice that satisfies his parents. “We couldn’t be more pleased with this community and Jon’s life here,” Lowell says. “I encourage Columbians to continue to do what they’re doing. We’ve seen all the good in people over and over again; people are genuine, it’s a handicapped-friendly community.”

 

 

Resources For People With Mental Disabilities

“We just happen to be living at a time when there were so many things available for Jon that weren’t available even a generation earlier,” Lowell Kruse says. Here are a few of the resources Columbia has to offer:

Central Missouri Food Bank: (573-474-1020, sharefoodbringhope.org)

The Food Bank distributes millions of pounds of donated food annually, free of charge. The food is sent to soup kitchens, emergency food pantries, shelters for the abused and homeless, programs for low-income children and senior citizens and rehabilitation centers. Support the CMFB on Nov. 13 by running or walking in the Cranberry Crawl 5k/10k.

 

Missouri Department of Mental Health — Central Missouri Regional Office (573-882-9835,dmh.mo.gov)

Established in 1974 as a cabinet-level state agency, the DMH has three goals: to prevent mental disorders, developmental disabilities, substance abuse and compulsive gambling; to treat Missourians with those conditions; and to improve public understanding and attitudes about those conditions. DMH services are available through state-operated facilities and private organizations.

 

Services for Independent Living: (573-874-1646, silcolumbia.org)

This nonprofit allows people with disabilities to maximize their independence by living as self-sufficiently as possible and making personal decisions. “We offer a variety of programs and services to promote equality, self-determination and the elimination of all barriers to independence,” says Executive Director Aimee Wehmeier.

 

Special Olympics Missouri (573-635-1660, somo.org)

SOMO offers mentally disabled children and adults the opportunity to compete in 21 Olympic-type sports all year long. Athletes gain fitness, confidence, respect and the opportunity to engage in sports ranging from powerlifting to horseshoes. This month (Nov. 19–21), athletes will participate in the state indoor championships in Joplin; events include bowling, volleyball and flag football.

 

Voluntary Action Center (VAC): (573-874-2273, vacmo.org)

VAC is a nonprofit social service agency that addresses the needs of Boone County residents who are at 150 percent of the federal poverty level. VAC helps people increase their independence and overcome obstacles to improve their quality of life. “Our services include assistance with prescriptions, bus tickets, work uniforms, birth certificates and numerous others,” says Project Director Marissa Todd. This month, VAC gears up for its Christmas Program, which sponsors 1,200 families during the holiday season through the generosity of individuals, churches, businesses and other organizations in the community. Contact the VAC office to sponsor a family.

november 2010
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