January-February 1999


PT REPORT - DEALING WITH DISABILITIES

Running the Race with Disability

by Brian J. Waldrop

Let me tell you about the neighborhood where I work. There are residents who work for organizations as diverse as city hall, a company that manufactures high-tech surgical instruments and a pizza parlor. Others do janitorial work, package items in a factory or do computer work. Some volunteer at a local hospital, day-care and food bank.

While many in this neighborhood are outgoing, a few are shy. Most are friendly and fun to be around, but some always seem to have a chip on their shoulder.

They are people -- the kind you meet everyday at the mall or on the street corner. But I failed to mention something: The people I just described all have disabilities, including mental retardation, cerebral palsy, Down's syndrome, William's syndrome or learning disabilities.


First impressions are often wrong. Don't judge people with disabilities because they may have more going for them than you might notice.

Because of these disabilities, some of my clients are in wheelchairs, walk with a limp or have speech impediments. A few are blind or deaf. But many have disabilities that are not visible.

To most of my friends, their disabilities are not the focus of their lives. They don't let their disabilities define who they are.

Have you ever noticed how natural it is to see someone in a wheelchair and automatically start thinking of all the things that he or she can't do? A man with a learning disability reminds us that "first impressions are often wrong. Don't judge people with disabilities because they may have more going for them than you might notice."

In 1 Samuel 16, the prophet Samuel was sent to the family of Jesse in Bethlehem to anoint Israel's next king. All of Jesse's sons passed before Samuel except for David who was left in the field tending sheep.

While considering the sons who were present, God spoke to Samuel saying, "Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart" (verse 7).

Those with disabilities desire to be seen by others as people first. You may notice their disability, but don't just look at appearance. Look beyond the wheelchairs, physical deformities, speech impediments and slow learning, and look at their hearts.

So how can Christians help those with disabilities to be recognized as people first?

1. Help them be independent.

Most disabled people I know want to be as independent as possible. But in our society, that's often hard for them to do. Many family members, care-givers and other well-meaning individuals try to do everything for their disabled adults. This can give the disabled person feelings of being helplessly and hopelessly dependent on others. It can squelch their desire to achieve. All of us, whether or not we have a disability, need to have a sense of independence and self-reliance.

A truly independent woman with cerebral palsy tells of going into a drug store where the aisles were too narrow for her electric wheelchair. Although the store clerk was more than willing to collect the items she needed, my client left. Why? Because in her own words: "I want to be independent. I want to be able to go and get it myself. If I can't get it myself, I don't want it."

Does this mean that we should be afraid to offer help to those who are disabled? Of course not. Just be sure to ask before helping. Don't assume that you know what a person can or can't do. I have found that most disabled people appreciate a helping hand when they need one. Just remember that although a disabled

person may occasionally need your help, he or she is not helpless.

2. Offer friendship.

When asked what the hardest part of living with her disability was, a woman with mild mental retardation responded quite simply, "Making friends."

Disabled individuals often get frustrated because their disabilities may keep them from making friends. Those whom they might choose as friends sometimes can't see beyond their disability. Sometimes they are merely being condescending. Remember, it's not enough to be kind -- true friendship requires sincerity.

3. Be an encourager.

Along with the need for friendship comes the need for encouragement. Sometimes just doing ordinary things can be discouraging to a disabled person. I remember one person, who uses a wheelchair, sharing with me her anger over an impatient woman at the mall who kept knocking on the rest room door for her to hurry up.

Another client came into my office nearly in tears one day. An insensitive person had asked why she walked the way she did and suggested she was drunk. My client walks with a limp due to cerebral palsy.

Many disabled people get frustrated because buildings -- even churches -- are not accessible for them. Stairs, narrow hallways and auditoriums that have no place to park a wheelchair (except maybe in the aisle where the person feels on display or in the way) are all-too-common situations. These are discouraging problems for the disabled.

Those with disabilities live in a world that is often not user-friendly. You and I can be an encouragement to them by offering an open heart and a listening ear.

4. Be a good spiritual role model.

The spiritual needs of disabled people are the same as ours. If those spiritual needs are not met with Jesus, they will be filled in counterfeit ways: alcohol, sex and materialism -- just to name a few. These are very real problems among some of the clients with whom I work.

5. Educate family and friends.

Christians can help disabled people by first educating themselves about disabilities, and then by teaching what they have learned to their children, family and friends. (See What Children Need to Learn, page 25.) People need to learn about disabilities so they won't fear those who have them.

A client who was addressing a group of kids about what it is like to have cerebral palsy said: "It's not bad. It's not a disease. You can't catch it. It's something you were born with."

In a world that seems to devalue people more everyday, Christians should be the first ones to look beyond people's disabilities. Those with disabilities have a lot to offer society as well as the kingdom of God. Whether we are disabled or not, we are all people for whom Christ died: "God's workmanship, created in Christ Jesus to do good works" (Ephesians 2:10). 

Brian Waldrop is a freelance writer living in Ohio.

What Children Need to Learn

Do your children know someone who uses a wheelchair, walks with a limp or uses crutches? Have they met someone their age who needs extra help doing everyday things? If they haven't yet, they probably will. So what should you teach your children about those with disabilities? As a social worker who interacts daily with disabled individuals, I suggest that children be taught the following lessons:

Don't fear people with disabilities.

A male client with a learning disability correctly observed, "People mock things they don't understand because they are scared of them." This is especially true of children. Help your kids see that when they put aside their fears, they might just find that a person with a disability makes a great friend.

Don't define people by their disabilities.

Labels such as mental retardation, cerebral palsy or paraplegia might tell something about a person, but not everything. When asked what's the hardest part of living with a disability, a young man responded, "Knowing I'm smart and knowing that I have a lot going for me but being treated in a way that doesn't recognize my intelligence."

There is more to a disabled individual than just his or her physical or mental limitations. Whether disabled or not, we all have things we either can't do or need help doing. Encourage your children to look beyond the wheelchairs, physical deformities or slow learning. "Man looks at the outward appearance, but the Lord looks at the heart" (1 Samuel 16:7).

A girl with William's syndrome sums it up well: "Those with disabilities want people to open their eyes that we are people too."

Children simply need to know that people with disabilities deserve to be treated with the same respect as everyone else.

What to do when you meet someone with disabilities.

If your kids follow the golden rule, "Do to others as you would have them do to you" (Luke 6:31), they can't go wrong.

Remind children:

Don't point or stare.

A woman who uses an electric wheelchair told me: "People look at me. I don't like it. There is nothing you can do about it." Another disabled person said: "They shouldn't make fun of you. You didn't ask to be born like this."

It's natural for kids to be curious. Just teach them to be polite.

It's OK to be friendly.

Often people who are scared of disabled people simply ignore them. Don't be afraid to smile, wave, or simply say hello.

Be willing to offer help.

People with disabilities may need someone to open a door, carry a package or reach something for them. Be willing to help, but be sure to ask before helping.

Parents can help disabled people by teaching their children about disabilities. And parents, remember that the best teaching comes by example!

 



PT REPORT - DEALING WITH DISABILITIES

Those "Special" Kids

by Barbara Curtis

I don't know what's gotten into her today!" Maddie's mother said, exasperated and embarrassed. Her normally confident three-year-old was resisting all invitations to join the preschool circle. Instead, Madeleine stood ill at ease, thumb in mouth, gawking at a group of slightly different peers -- children with "special needs."

How odd! her mother thought.

Especially considering one of the children was Maddie's four-year-old brother. Jonathan had Down's syndrome, and until recently he and Madeleine had been like twins. Even as she began to pass him by developmentally, they had remained the best of friends. That's why she had been allowed to tag along for Jonny's first field trip with his special education class.

"Kind of makes you wonder who has the disability," I said, turning to another parent in the class. It was a remark I could get away with because Madeleine is my daughter. And Jonny is my son.

Differently-abled

Jonathan's birth launched me into a dimension I hardly knew existed. I never thought of being a parent of a differently-abled child. I was oblivious of what would be required.

I use the word differently-abled, not because it's trendy or politically correct -- we everyday parents of special kids don't pay much

attention to those things. I choose it because it best describes the

children I met when God -- through my special son -- unlocked a door to a world that not everyone is privileged to experience.

It was the door I opened when I took nine-month-old Jonathan to his first Easter Seals group. There we sat in a circle with other mother and infant pairs singing, clapping and playing with bells and bubbles and balls. It's called early intervention. Not very long ago such children's lives were wasted in institutions. No one had yet figured out that, with a little extra help and love, they could become all that God had created them to be.

But who was I to talk? I had never thought of the disabled as special -- never thought much about them at all. Maybe that's why my heart felt so full as I held my special boy singing, "The Wheels on the Bus" and gazing around the circle.

Emotional Response

Some of what I saw shocked me. There was Christopher, whose head was twice the normal size, startlingly asymmetrical, with only one eye. And Anna, who looked -- at one year old -- like a 12-pound, wrinkled old woman. And Gabriella, who was blind. Sam and Jenny both had cerebral palsy, but to different degrees. Some children, like Jonathan, looked almost normal, but some were like no one I had ever seen.

Their mothers shared a unique beauty produced when life mixes grief with joy, fragility with strength -- then covers it all with tenderness and fatigue. Like mine, their lives had been irrevocably changed by the birth of the child that brought them here. All were in some stage of coping.

We learned more about each other when we left for the mothers' group while others worked with our children.

Christopher's mother cried. Her husband was becoming more and more withdrawn. She knew the statistics: eighty percent of marriages end in divorce following the birth of a disabled child.

But there was a more immediate problem: she couldn't bear to take the baby anywhere, to see the horror in people's eyes when they first saw her son.

Anna's mom felt the same. And she struggled with whether or not to get pregnant again.

The genetic counselors were not sure whether Anna's disorder was chromosomal. Besides her appearance, Anna had been plagued by many operations.

Would another child cause as much heartache?

Jenny's mother dealt with guilt. And wondered who to sue. Her home birth had gone awry and because of delay in getting to the hospital, her daughter would be different all her life from what she might have been.

For two years we mothers shared it all, supporting each other through our children's operations (The most dramatic one being Christopher's head reconstruction and plastic surgery), subsequent pregnancies (resulting in three healthy babies) and stresses in our marriages. We rejoiced with those who rejoiced and mourned with those who mourned. For two years, though I was the only Christian in the group, I had a sanctuary where I found more love and compassion -- a more tangible picture of Jesus -- than I was able to find in the church.

Christian Community Support

Jonathan's almost five now, Madeleine's four, and we've added two more to our family. Jesse and Daniel are two baby boys with Down's syndrome whom we have adopted in the past 18 months. This brings our total number of children to eleven. But who's counting?

When people who know we already have a large family are surprised that we would take on two more with special needs, I just smile. "When we found out what a treasure we had in Jonny, we decided we wanted more like him," I say.

This is not an easy concept for most people to grasp. Even Christians. I guess one of the great sadnesses of being a parent to differently-abled children has been the inevitable isolation. No matter how much I regard my special kids as special blessings, it remains difficult for those outside my experience to share my enthusiasm.

And saddest of all is that in some areas, the Christian community lags years behind the secular in accepting and supporting children with special needs. For years, public school kids have been spending mandated classroom time getting to know and feel comfortable with differently-abled kids, while kids in most Christian schools have not been given this opportunity. And neither have their parents.

One Christian mom, Becky Wold, after two decades of raising children with disabilities, states flatly, "We've had more negative reaction from the church than we've had from the secular world."

When pressed for possible explanations, she offers these:

1) Judgmentalism: "Typically, Christians either tell me that the Lord loves me so much he's given me this burden to carry; or they secretly suspect that my husband and I must have done something terribly wrong to have two children with disabilities."

2) Blindness: "Some feel that where they see no healing there is a lack of faith. Often healing comes in a different way. It hasn't been physical, but emotional or spiritual."

3) Fear: "People are afraid to ask questions. They're afraid to get involved because then they'd have to do something."

Broadened Perspective

The contrast between the isolation a special parent feels within the church and the warmth and encouragement available in society at large (Easter Seals workers and physical therapists) can throw a Christian for a loop. As I said, it has been a source of sadness.

One mother told me this story: "Baby dedications are always my favorites. But this Sunday I ran out of the church in tears. Why? Because one proud pair of parents shared this report: four months before, prenatal tests had indicated their baby might have Down's syndrome. They described their anxiety in great detail and their joy at giving birth to a 'perfect' baby.

"The applause which followed felt like knives piercing my heart. After five years of watching my son Jacob grow and flourish, my spiritual brothers and sisters still thought of him as somehow inferior. What if Jacob had been thirteen years old and heard that message? How did his brothers and sisters, who love him dearly, feel to know that their church family was relieved not to receive someone like their brother?

"I went to see my pastor, to try to educate him that Down's syndrome was not an accident, but a genetic pattern. As in Psalm 139:13-14, Jacob was made just the way God wanted him. My pastor looked at me as though I had two heads. I felt that he didn't care enough. We left that church shortly after. I just felt we'd never belong."

I understand this mother's feelings. I also understand the pastor. After all, God used Jonathan to broaden my perspective and enlarge my heart. He showed me how little he cares about our intelligence and physical appearance and how much more he cares about how we live and whom we serve.

Looking back, I know that it must have been me he saw as disabled. 

California resident Barbara Curtis is a proud parent of 11. Her latest book, Ready, Set, Read! (Broadman and Holman, 1998) is available at www.amazon.com.


PT REPORT - DEALING WITH DISABILITIES

Broken, But Don't Need Fixin'

by Laurie Thompson

My heart was pounding. Beads of sweat were pouring down my forehead and the back of my neck. I was totally focused on my objective -- to walk a mile on the treadmill. My goal each week was to spend at least three days in the gym to improve my health.

A middle-aged woman beside me suddenly interrupted my train of thought, "Boy, this sure does wear you out, doesn't it?" She was staring at me waiting patiently for a reaction or comment. "Yes, it really does. But you know what they say, no pain, no gain."

A few moments passed. "What happened to you? I mean, I noticed you walk with a cane." I was asked this question a lot. But telling my story always gave me an opportunity to share what the Lord had done in my life.

"In 1982, my family and I were going to Florida for Thanksgiving when we were hit head-on by a drunk driver. My back was broken, and I was paralyzed from the waist down. The doctors told me I would never walk again, but the Lord intervened and chose to heal me. Today, I am only paralyzed from the knees down, wear leg braces and walk with a cane."

The Great Physician

The woman had to think a moment before she responded. "If you pray more, you know, the Lord will completely heal you." She clearly had a misunderstanding of God's Word and his promises. But she was sincere, and I had to be careful not to offend or hurt her feelings.

"Ma'am, I have prayed, and God has healed me. Even though I would love to be perfectly 'able-

bodied' again, apparently that is not God's will for my life. I rejoice that I am even able to walk. Jesus Christ is the Great Physician, and he has all authority and power to work miracles, but he does not always answer our prayers in the way we may think best!

"Paul was an apostle and constantly prayed for healing of his 'thorn in the flesh' (2 Corinthians12:7). Just because God did not heal him, does that mean Paul did not pray hard enough? Certainly not. God allowed the thorn in Paul's life so that he could be glorified somehow through it."

The Challenge

I had lovingly presented the truth to this woman while at the same time challenging her thinking. That was all I could do.

This encounter challenged my own thinking. I went through a range of emotions as I pondered her comment. My body may seem broken to some people, but I am whole. Wholeness is not dependent on circumstances or physical or emotional condition. Wholeness comes from within -- from a relationship with Jesus Christ! Every human other than Jesus is broken and cannot be whole unless they have Christ.

The comment this woman made to me was evidence of her belief system surrounding God and his goodness. She could not comprehend how God could have left me partially paralyzed if I had really prayed hard enough for healing.

Of course, I had prayed for healing but my previous understanding of healing was to be completely normal again physically. That was apparently not God's plan for my life. I have learned that I must keep this concept in perspective. I must recognize my need for him before he can use my disabled body in its fullness to bring glory to himself.

The bottom line is that we are all broken. We are not whole. No matter how good we look on the outside, it is just a shell.

So, just like everyone else on the face of this planet, I am broken -- but I don't need fixin'. Jesus has already done that in my life! 

Laurie Thompson is a freelance author with a B.A. in Business from Clemson University. She is a mother and homemaker.

 

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