Enhancing the quality of life

By Rabea Stueckemann

"Fitness for All"

“Fitness for all”

They work hard, laugh, and cheer each other on. Every Monday at 4.30, the motto is “Fitness for all” at Hilyard Community Center in Eugene, Oregon. What sounds rather unspectacular is actually a collection of exercises designed to promote the health of 8 participants with various disabilities, including Rett syndrome, bipolar disorder, mental retardation and Down syndrome. “We are all in the same team,” says instructor Lori Zimmerman before giving everybody a high five.

There are 514,000 Oregonians with disabilities and their needs are immense. Approximately 96,000 of them have difficulties with performing activities of daily living such as dressing, bathing or moving inside their homes. Many have found a safe haven in Eugene, a community that not only tolerates but demands help for people with disabilities.

Hilyard Community Center

Hilyard Community Center

Hilyard Community Center in the Amazon neighborhood is the core of Eugene’s disability support. Working with over fifty partners and agents in town, the center serves 700 to 800 individuals with cognitive, emotional, mental, social and physical disabilities.

For the majority, Hilyard is the only social outlet. The center functions as a second home, where instructors and patrons form equal members of a big family. Participants visit voluntarily, not only to engage in fitness and health classes but to fight loneliness.

Richard Miesen is a developmentally delayed individual who visits the center several times a week. Besides many friends he has also found his girlfriend at Hilyard. It is the only place where he can feel good about himself. “Sometimes it hurts when people call you retarded, stupid, crazy or dumb,” he says. It makes him want to reverse roles so that people know what it feels like to be disabled.

“I don’t want pity. I just want people to understand who I really am… to treat me normal,” he repeats several times. He wishes people were not afraid of asking questions. “We are equal,” he says. “We just do things differently.”

Some patrons feel controlled by their parents or caregivers and long for independence. “I see their desire to connect and socialize and even have romantic relationships,” says intern Heather Waddington.

Joe Basey during Friday Rec

Joe Basey opens the Friday Rec class

Besides classes directed at particular disabilities, Hilyard Community Center also offers classes like Friday Rec that are open for everybody. The class promotes self-confidence through mutual assistance. The goal is to use a safe environment to teach appropriate social behavior and a healthy lifestyle in order to facilitate integration into the community.

Joe Basey supervises many of the social clubs. He has Cerebral Palsy and is a role model for participants and instructors alike. “It is a challenge to make the community understand that although I have a disability, I am competent enough to do my job,” he says.

While acknowledging the support of the community, he also remembers multiple negative experiences. When grabbing a coffee with a friend, people automatically see this person as his care provider. Sometimes they make jokes. “That just shows a lack of education and usually I can laugh it off,” he says.

People tend to associate his slurred speech and the limp on his left side with a lack of intelligence. He remembers instances when individuals entered the center and demanded to speak to one of his able-bodied colleagues. “I just want to be respected and seen as a professional,” he says.

Participants with intern Ian Fox during Friday Rec. The person holding the ball explains what he or she is thankful for.

Participants with intern Ian Fox during Friday Rec. The person holding the ball explains what he or she is thankful for.

Whether full-time instructor, intern or participant, everybody plays an equal role in the Hilyard family. Experienced instructors and young interns complement each other. “I am practical, comfortable and flexible; they have the book smarts and the new studies,” says Zimmerman. “It is a perfect combination…a give and take from both sides,” she says.

For Zimmerman, the biggest challenges are communication and patience. Some participants hardly talk and others are difficult to understand. “You can either pretend to understand them or really try hard to do so,” she says. “The biggest mistake is pretending. They are too intelligent not to see you’re fake.” Pushing herself to live up to her expectations is a sign of her respect toward the efforts of the participants.

Instructor Lori Zimmerman with Kevin Ruede

Instructor Lori Zimmerman with Kevin Ruede

Zimmerman feeds Kevin Ruede, a young man who has severe Cerebral Palsy and uses a wheelchair. He is known for constantly repeating what he says and most people are not willing to try teaching him otherwise. Zimmerman recognizes his intelligence and began to challenge him by implementing a new rule, walking away when Ruede repeats things more than three times.

When Ruede stops talking about the moon unexpectedly and says, “Grandma helped me put on my shoes today,” Zimmerman holds her breath. “It makes me have chills up and down my spine and it gives me a hug deep inside of me,” the 46-year-old says with sparkling eyes, tears running down her cheeks.

On the other side of the room, Waddington jokes and teases the participants. She bursts out in song every once in a while to entertain them. An older woman calls her crazy. Waddington smiles and says, “You know, I’m a bit crazy, and you’re a bit grouchy, but we can still be friends.” Later on, the woman grabs her hand and apologizes

For Waddington, these gestures are life changing. “Moments like this show me that we are truly all the same,” she says. “We all feel need and acceptance from others.”

She enjoys the absence of judgment. After working with alcohol and youth rehabilitation, Waddington says, the Hilyard environment is a blessing. “With these folks, I really feel like being myself.” The participants love her positive attitude and silliness.

Unfortunately, with disability comes cost and need. The program is highly subsidized by the city. “Without the right mindset from the city council, mayor and community as a whole,” program coordinator Patty Prather says, “this unique system could not function.”

One of the three paratransit vans

One of the three paratransit vans

The costs for buildings, three paratransit vans, instructors, staff, and adaptive equipment are high. There is a lack of space and waiting lists get longer and longer. A growing program demands more sponsors and volunteers.

“I don’t know how I will come up with all the money, but I will,” Prather says. “I believe in what I do and I am here to serve.”

The participants face the biggest financial challenges. More than half of them live below the poverty line. Most of them can only visit Hilyard by accessing a vast scholarship system that is restricted to Eugene residents. This means that although Hilyard is the only adaptive recreation program in the greater Eugene area, many participants from neighboring districts will never enjoy the benefits because they cannot afford it.

The entrance to Hilyard Community Center. Symmetry and bright colors help people with a visual impairment to find their way around more easily

The entrance to Hilyard Community Center. Symmetry and bright colors help people with a visual impairment to find their way around more easily

Despite needs that will always be there, the program is a role model on a nationwide scale by offering more than 2500 activities annually. “I feel very fortunate to work for an organization that can see the big picture and recognize that people with disabilities have a lot to give back to the community,” Prather says.

The fitness class winds down as the last beats of “Sexy and I know it” still echo in the room. There is laughing, clapping and cheering everywhere. “Did you smile?” Zimmerman asks at the end of class. “And did you help other people smile?” she adds. The participants agree and embrace each other.

SIDEBAR

Good to know!

To avoid language offensive to people with disabilities, follow these guidelines.

1. Avoid terms that equate a person with his or her disability. Rather than saying “The blind person,” say “The individual with a visual impairment.” Instead of saying “The disabled man,” say “The man, who has a disability.”

2. Never refer to a person without a disability as “normal.” Instead, use the terms “able-bodied,” “typically developing person,” or “nuero-typical person.”

3. Avoid the terms “afflicted with,” “stricken with,” “suffer from,” “handicapped” and “victim of.” These terms connote pity and suggest that a person with a disability lives a reduced quality of life. Instead, state the nature of the disability and say, “He has Cerebral Palsy.”

4. Avoid the term “invalid” when describing a person with a disability because it implies that a person has neither abilities nor sense of self.

5. Avoid the term “special need(s).” Instead, use “specific accommodation.”

6. Never use the word “illness” instead of “disability.” People with disabilities do not see themselves as sick in any way.

7. Avoid the terms “defect” or “defective” to describe a disability. Rather state the nature of the disability or injury.

8. Injuries are never “suffered.” They are “sustained” or “received.”

9. Avoid the terms “confined to a wheelchair,” “wheelchair-bound,” “wheelchair-rider” and “vertically challenged.” Instead, say “a person who uses a wheelchair” or “wheelchair user.”

10. When describing individuals with varying degrees of hearing loss, avoid the terms “deaf mute” or “dumb” and use “hearing impaired” or “partial hearing loss” instead.

11. Avoid euphemisms such as  “physically challenged,” “special” and “differently abled.” The disability community wants to be taken seriously. They do not want pity.

12. Avoid the term “patient” when talking about a person with a disability, as this term is only used when referring to somebody who resides in a hospital. Hilyard Community Center only refers to “patrons” or “participants.”

13. When discussing cognitive disabilities, avoid the terms “retarded,” “deranged,” “deviant,” “demented,” “deficient,” “insane” and “neurotic.” All these terms are considered highly offensive.

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