94902_000_006Growth is the reward for everyone when we respect the abilities of members with mobility and movement problems and help them face their challenges.
When Chad Orison was in kindergarten, his mother received a phone call from his teacher. Chad had poor motor skills, and she recommended that he be tested. Physicians were puzzled by the first hospital tests and sent the results to specialists for analysis. Meanwhile, Chad’s body continued to deteriorate. In the first grade, he had trouble with writing; by second grade, his teacher recommended that he be put in a wheelchair for his own safety. “He went from walking to a wheelchair in a two-month period,” his mother, Shauna, recalls.
Chad was finally diagnosed with dystonia, a disease that renders muscles useless by preventing them from responding to impulses from the brain. “The testing was terrible,” says Shauna. “Not knowing was difficult, and we were naive. We expected to find some simple thing we could fix.” Chad, now a teenager, has use of only one arm.
Understanding the Challenge
Imagine for a moment some of the ordinary things you do every day, almost without thinking: combing your hair, tying your shoes, bathing, dressing, eating. Then imagine doing these things without the use of arms or legs. Now add to these physical challenges the stress caused by the emotional and social challenges you would face.
Still, your picture of what it is like to have a motor or orthopedic impairment can never be complete, because it cannot account for individual differences in abilities and attitudes. Some people who have lived with impairments for years have adjusted so completely that they seldom think about their disabilities; others who are newly disabled may wonder if they will ever think of anything else again. Although full understanding may not be possible, we can try to appreciate the challenges people with motor or orthopedic disabilities face so we can relate to them in meaningful, caring ways.
What Are Motor and Orthopedic Disabilities?
Motor disabilities and orthopedic impairments are similar in that they are both characterized by the limited or irregular use of limbs or body parts. But in motor impairments, the disability results from damage to the central nervous system so that body parts do not respond normally to directions from the brain. Orthopedic impairments, on the other hand, result from the malformation or crippling of the skeletal frame. In some cases, bones, muscles, or entire limbs may be missing.
Mobility problems have a wide variety of causes, including congenital defects, accidents, old age, and illness. Some movement disorders may sound familiar. For instance, most people have heard of muscular dystrophy, a genetic disorder that gradually destroys muscle mass, causing a loss of function. Spina bifida is a congenital defect that occurs when the spinal column is exposed by improper fusion or lack of fusion of the vertebrae. The extent of the resulting paralysis depends on the point at which the spinal cord is damaged. Another common cause of mobility problems is multiple sclerosis (MS), a disease in which inflammation of the nerve sheath interferes with the nerve tracts that carry messages between the brain and the muscles. During the past few years, a tremendous increase in movement problems has come from accidents. Because of improvements in medicine, doctors can now save lives, but the injured often lose at least part of their motor capacities.
Many impairments involve a lot more than simply losing mobility in parts of the body. The experience of Lynn Kenison of West Bountiful, Utah, is a case in point. After being stricken with polio when he was six months old, he spent many summers in the hospital in body casts following surgeries that were intended to give him increased leg movement. As an adult, he now suffers from the effects of post-polio syndrome, which include severe pain and gradual loss of muscle strength. Lynn’s use of crutches has also led to carpal tunnel syndrome, a painful condition caused by compressed nerves in the wrist, and to frequent surgeries to repair carpal tunnel damage.
The Challenge of Emotional Adjustment
No matter what causes the impairment, the initial adjustment can be traumatic for both the individuals and their families. Two of Paul and Sherrie Morris’s four children were born with Tar syndrome, a condition in which the arm has no radius bone, giving the appearance that the wrist is joined to the elbow. Sherrie recalls, “In the beginning we felt as though the world had come to an end. We anguished over the limitations they would have and the opportunities they would miss. But after the despair and the inevitable ‘Why us?’ questions, we took the possibilities and went from there.”
One mother observes, “You really turn to the Lord when something like this happens. But friends are a wonderful source of strength as well. I had great neighbors who were a big support, and they were there when I needed a shoulder to cry on.”
Even a well-adjusted person with disabilities will face some tough times emotionally, particularly at transitional stages in life. In speaking of her son who has a disability, one mother observes, “Although in public he is always positive, inside he struggles a lot. He is concerned with finding a mate and dealing with life. His peers have always accepted him, but he wonders what attitudes he will find in the world at large.”
The Challenge of Accessibility
For most of those with mobility problems, particularly those with motor impairments, access to buildings remains a major barrier to living a “normal” lifestyle. Such problems are more pervasive than we may realize. “Most people are aware that a flight of stairs presents a problem,” comments Debbie Mehr, who became partly paralyzed in a snow-tubing accident. “But smaller things are often bigger barriers. On several occasions, I have been assured that a building is wheelchair accessible, only to find a single step preventing my admission. For someone in a wheelchair, that step is the same as a ‘no wheelchairs allowed’ sign.”
Heavy doors, fire safety doors, and double doors also present challenges for someone trying to maneuver a wheelchair through the doors. Even when there is a parking space to accommodate individuals with mobility problems, someone else may have parked in it. There may not be a ramp to provide access to a sidewalk. Store aisles may be too narrow for wheelchairs. The obstacles are many and varied.
The Church has made great strides in making its facilities accessible to those with mobility problems. Most new buildings have wheelchair-accessible curbs, gently sloping ramps, and other features suited to wheelchairs. But problems still remain. According to Ralph Rigby, a stake patriarch who has had MS for twenty-five years, “There are still major problems in many of the older meetinghouses. My old ward building had at least twenty steps. You quit going to wedding receptions and funerals because you have to contend with steps.” When their ward buildings do not have wheelchair access, some members attend other wards than those in which they live.
Participation by members with mobility problems may be limited in other significant ways. One man expressed frustration at the fact that because he could not get his wheelchair to the stand, he could never bear his testimony. Fortunately, many meetinghouses are now equipped with portable microphones that can be brought to those unable to go to the podium. One woman confided that she stayed away from church for years because she had to rely on members to carry her up the stairs of the meetinghouse, and she felt that she was a burden for them.
Church members who are aware of these kinds of needs and extend help can make a real difference. A Scout in Brother Rigby’s stake made it his Eagle project to construct a short ramp up to the stand in their chapel.
The Challenge of Transportation
While many people with mobility problems are able to drive cars or walk without assistance, transportation problems plague others. Technological advances allow vans to be equipped with power lifts, and motorized carts and wheelchairs can give added independence. But according to Debbie Mehr, “If the cost of technology is prohibitive, you have to depend on others for transportation—but you hate to do that all the time, because you feel as though you are always asking.” Neighbors and ward members who offer rides without waiting to be asked can be a real blessing.
The Challenge of Independence
It is sometimes difficult to know when help is really needed. Sister Dwan Young, whose husband served as a mission president of the Canada Calgary Mission, relates how she felt when she watched an elder with motor impairments struggle to open the letter that contained his first field assignment. “I started to get up to help him, when a missionary gently restrained me, saying, ‘It’s difficult to watch, but he can do it, and you let him!’”
According to Terry Clawson of the Los Altos California Stake, who works as an occupational therapist, “A mistake we can make in our attempts to help is to suppose that people with disabilities can’t do anything.” The needs of one person are not necessarily the same as another’s. While one person in a wheelchair may need help to open a door, another may take pride in his ability to do it himself.
The solution to the quandary of whether or not to help is simple: ask. “I have been raised to be super-independent,” comments one young man, “but other people might not be as used to their bodies and might need more help.” He stresses that asking if help is needed is proper, even if the person with mobility problems is a total stranger.
The Challenge of Ignorance and Prejudice
One woman relates an incident that led her to do some soul searching: “After pushing my mother in her wheelchair to the farthest gate in the airport, my feet were killing me. My husband suggested that I sit in the wheelchair while he pushed me back to the entrance. I was amazed at the view I had from that chair! People would look toward me and then, thinking I was disabled, quickly look away in embarrassment. I was appalled, but I wondered if I had ever done the same thing.” As Terry Clawson notes, “We need to be make eye contact when we approach a person with a disability. This gift tells them that we know they are more than their disability.”
Nola Madge of Milk River, Alberta, has had MS for forty years and drives around the grocery store in a motorized cart. Experience has helped her find humor in the situation. “Adults sometimes avoid making eye contact with a person with a disability. Children, on the other hand, will ask me, ‘Why do you ride that little thing? Can I have one?’ Children have no problem asking, and I have no problem answering.”
Adults often fear that questions may offend; instead, questions open an opportunity for understanding. Kathy Vorwaller of Tooele, Utah, who was born without arms and with malformed legs, explains: “Parents usually try to hush their children when they ask questions about me, but I would rather they let me explain. Once their questions are answered, people’s curiosity turns to acceptance.”
Stereotypes are responsible for some of these attitudinal problems. Thanks in part to the way the media has presented disabilities in the past, many see those with mobility problems either as superhuman heroes who have overcome impossible odds or as people to be pitied. Debbie Mehr speaks for many when she says, “We should have the same expectations for people with disabilities as for everyone else. We want to have families, hold down jobs, and so forth. We are just average people who want to pursue life without additional attention.”
A prevalent stereotype with many people is that people with disabilities are “special.” According to one individual, “People go so far out of their way to treat me as ‘special’ and not hurt my feelings that they sometimes end up hurting my feelings! They may say things like ‘You are so brave,’ or ‘You are such an inspiration,’ when really I just want to be treated like anyone else.”
Mary Walker, an occupational therapist who works with children who have disabilities, adds, “Most of us want to have reasons for everything, and so we invent stories about why a particular person has a certain disability. Some decide that the person was celestial and could handle the test. It may be a nice sentiment and may be true in some cases, but we just need to love without judging or having to know any reasons, because for the most part the reasons are unknowable.”
Improper attitudes also arise from misunderstanding about particular disabilities. One mother, whose son’s unresponsive muscles make it difficult for him to talk, says, “The biggest problem I see is strangers who think that because he is physically disabled he must also be mentally disabled. That’s not true.”
Other times, a person may avoid individuals with movement problems because of their appearance. “Some mobility-impairing conditions can cause a person to lose grace, beauty, and control of the body. We need to learn to see beyond appearances,” comments Terry Clawson. The heartache such prejudices can cause is illustrated by Mitch Nelson of Middleton, Idaho. Mitch, who has multiplex congenita, a condition that produces withered arms and curled hands, served a mission in Canada. “Once while I was on my mission, a little girl fell off her bike and was crying. I tried to help, but she was so scared of the way I look that she wouldn’t let me. That hurts!”
Brother Nelson has found that one way to handle awkward situations is to have a sense of humor. Once, when he met a child for the first time, the child gawked at Brother Nelson’s curled hands and remarked, “Oh, nice hands!” Brother Nelson’s humorous comeback of “Thanks! I did it myself!” broke the tension.
The ability to joke about a disability means that the individual has accepted his or her limitations, and good-humored joking by peers signals that they are able to see beyond the disability to the complete person. Traci McClellan of Orem, Utah, points out, “All my friends joke with me about being in a wheelchair, and I do too. When we’re supposed to stand in Young Women to say the theme, someone inevitably jokes, ‘Traci, stand up!’ That makes me feel comfortable and accepted.”
The Challenge of Inclusion
Curt Brinkman, a member of the Young Men general board who lost his legs in an electrical accident, speaks for many when he comments, “We are just like anybody else, with the same wants and desires and concerns and needs. As a result, we want to be included in activities and discussions. We want to feel there is a place for us.”
Making the effort to include individuals with movement problems is well worth it. One mother recounted several extra-mile efforts made on behalf of her teenage son, who is almost completely immobilized. Several of his friends have invited him to parties or to spend the night. “When you think of a fifteen-year-old boy helping another with his toilet functions, that is a pretty special kind of friendship.”
In one instance, a high school coach made a big difference in a boy’s life. He said, “We want to see him at the games!” and he did more than just encourage it. He had a sidelined football player pick him up in the parking lot and then push his wheelchair up and down the sidelines during the game.
In many cases, Church members and leaders have gone the extra mile to include members with movement problems, installing ramps at girls’ camp or giving individualized help to Scouts who need it. “The love of Church leaders has been overwhelming,” says Shauna Orison of Farmington, Utah. “They feel that my son is just as important as any other teenager. They went to incredible lengths to include him in youth conference, modifying rope courses and other things so he could participate.”
Often, it is small acts of kindness that are most appreciated. One father acknowledged with gratitude that his daughter, who is severely weakened by a form of muscular dystrophy, “is about as ‘normal’ a teenager as you can get. It is people who are mindful of her needs and who patiently do the little extras—not anything spectacular, but just assisting as needed—who make this miracle possible.”
The Need to Serve
Perhaps even greater than the need to be included in activities is the need to serve, even when such service is difficult. An excellent example is Mitch Nelson, who learned to play the piano with the knuckles of his curled hands and served as the priesthood pianist from the time he was a deacon. His orthopedic disability also makes it a challenge to lead a congregation in singing. But according to the wife of his former mission president, “Mitch has a great enthusiasm for music, so when he stood in front of the missionaries at zone conference with those sparkling eyes—well, you just couldn’t believe the sound from the group! His difficulty in beating the pattern was forgotten.”
Lynn Kenison is a great example of community service. Despite the challenges he experiences from post-polio syndrome, Lynn spearheaded the development of a city park, singlehandedly laying two miles of sprinkler pipe.
Ward and community leaders should never hesitate to offer service opportunities to those with disabilities, consulting frankly with the individuals and their families about possible hardships and rendering support and assistance as needed.
The Challenge of Employment
An important source of self-esteem for any person is employment. In the past, unwilling employers often made it hard for people with mobility problems to find jobs. But employers who are flexible and creative in job placement have tapped a lot of power by hiring those with movement problems.
Consider the case of Marcus McInnes, who was born with spina bifida. Marcus runs a dry cleaning business and uses it to provide part-time work for high school students with disabilities. According to Marcus’s father, Murray, “It takes real determination on the part of the parents and the child to make it work. But it works! The business is thriving, and the employees feel terrific about themselves.”
Ever since recent legislation in the United States made it mandatory for employers to accommodate employees with disabilities, more and more employers have begun to reap similar benefits. Kathy Vorwaller’s experience illustrates. Despite being born without arms, Kathy is employed by the Utah Transit Authority as a computer programmer. She uses the four toes she has on one foot to type. Her company also employs people who are blind, autistic, or otherwise disabled. According to general manager John Pingree, “We hire people like Kathy because experience has shown them to be very reliable. They work hard, and they carry their share of the load. They also inspire other workers. Seeing them function so well helps others realize that their own problems are not insurmountable.”
Ward members can help greatly by considering disabled people for employment or by being alert to job opportunities at their places of business.
Many people with movement problems and their families feel that they are learning important lessons through their struggles. As Sherrie Morris comments, “Our trials sometimes seem tailor-made for us. When we can’t go any farther, Heavenly Father reaches down and picks us up. But he lets us go as far as we can first.”
Like Sherrie, many have learned to concentrate on their possibilities without dwelling on their problems. Kathy Vorwaller frankly asserts, “I have always thought that if I can’t do something, grumping about it doesn’t do any good! I just look at something else I can do. Being sad about my situation doesn’t help. This is how it is, and I can make the best of it or the worst of it.”
Nola Madge has learned the lesson of gratitude through her disability. “Maybe I needed to be a little more aware of people and more thankful,” she says. Nola voices thoughts typical of people with mobility problems when she sums up the growth she has experienced: “My faith in the Lord grows every day. I know that a power beyond my own is helping me. The Lord has said that he will not give us more than we can bear. When things seem hard, it helps to remember that and to think, ‘Yes, I can do this!’”