Take Root and Write

Traveling with a Disabled Person

 

As Christmas approaches, many people will be traveling to spend time with family and friends. My parents and sister are visiting from South Africa and I've been reminded of the challenges that disabled people face when away from their home environment. My sister has mental and physical disabilities and although she can walk, she is slow and unsteady on her feet and needs a supporting hand when out of the house. I've had to slow my pace and look for the best ways to help her and accommodate her needs.

This got me thinking about disabled visitors. If you have a disabled friend or relative visiting over the holiday season, there are ways to make life easier for them. A little forward planning can go a long way so read through these suggestions and make plans and preparations before they arrive.

Accommodation for People with Disabilities

Depending on the type of disability, a person may have specific needs when it comes to living arrangements. Meeting these requirements as far as possible can make the visit a pleasant one for all concerned. These are some of the areas to consider. Does the person need a special bed? What height, type of mattress and firmness is required? Will protective sheets be necessary and what about a safety rail? Do they prefer to shower or bath and do they need a bath seat or other equipment? Is your home wheelchair friendly and are there stairs and uneven surfaces? It is possible to hire some equipment and the best thing to do, is discuss the issues with the person concerned before making arrangements.

What about the Garden

People with mobility problems and impaired vision will find a hilly garden with rock features and narrow paths difficult to manage. If you are planning on outdoor entertaining, try and center this around areas that are suitable for your guests. Flat paved areas with shelter from the elements are ideal. Be careful of any loose stones or cracks that could snag a crutch or trip someone up. If you have a pool, invite the disabled person to join in the fun. Many find water exercise ideal and with assistance can have a great time. Even if they prefer to sit on the steps and splash around, it will be enjoyable for them.

Are our Churches Disability Friendly

In recent years, a greater awareness of the need for disabled-friendly buildings has arisen. Most new structures are built with this in mind and in many countries, public buildings are required to provide wheelchair access and wheelchair toilets. Even so, there are often times when disabled people may feel uncomfortable in a church environment.

What does a Church Building need to be Disabled-friendly

People with mobility issues or wheelchairs and those with sight problems need level floors, wide doors and access ramps. Wheelchair toilets are a must and flat wide paths through garden areas are useful. The best way to determine what a particular facility is lacking is to ask disabled people who make regular use of it. It may be something as simple as a hand rail or it may require major renovations. At the end of the day, can we place a price on making our church user-friendly?

What other ways can a Church cater for the Disabled

There are many little actions that show people with disabilities that the church cares for them and is willing to accommodate their needs. Simple things like taking communion to someone in a wheelchair can save them the difficulty of maneuvering their way to the front. Seating deaf people in the front will enable them to lip read if there is no Sign Language interpreter present. What about taking a chair off the end of a row so a wheelchair can park there? There is no reason why people in wheelchairs should have to sit at the back week after week. Are guide dogs welcome to sit in the service and are large print notices or hymn books available for visually impaired people?

Are Services and Gatherings Punctual

While there is a place for flexibility, the needs and routines of people with disabilities need to be considered. If a person or group are dropped and collected by a bus at certain times, it can be disappointing for them to miss the end of a sermon or the chance to socialize after a service. If there is a special celebration service or similar happening, find out if their timetable can be adjusted for that Sunday. It means a lot to people when their circumstances are considered.

Understanding Asperger’s Syndrome

 

Asperger's Syndrome is a form of autism where the person is often highly intelligent but struggles with communication and social interaction. The condition is not widely recognized and undiagnosed children and adults may end up in work and school situations that are uncomfortable for them. Asperger's Syndrome is often detected when a child starts preschool. He will generally interact better with his teacher than his peers and may display silly, loud, aggressive or socially withdrawn behavior.

 In some cases, Asperger's can be classed as a disability and appropriate help and resources can be sought.

In order for us to help people with Asperger's Syndrome, it is important that we familiarize ourselves with the symptoms and typical behavior patterns. I have met several people with the condition over the last few years and understanding the implications has helped me to relate to them in a better manner.

How does Asperger's Syndrome affect a Person

Asperger's Syndrome is characterized by problems in three areas and the level of difficulty experienced can vary greatly from person to person. The areas are social communication, social interaction and social imagination.

Asperger's Syndrome and Social Communication

People with Asperger's Syndrome often speak in a strange manner, with a flat monotonous tone. They also tend to speak slowly. Eye contact, facial expression and body language are a mystery to them and when talking to another person, they struggle to read signs of boredom, impatience or frustration. This means they keep talking and may gain a reputation for being insensitive and boring. The child may appear cold and unemotional, but it is not deliberate. He does not think about others and cannot understand the social graces that keep society functioning.

Leanne’s Story – Born with Rubinstein-Taybi Syndrome – Part 2

 This is part two of my sister's story as told by my mother. You can read part one here.

Has Leanne had medical problems?

Leanne has had much illness but always comes through smiling and her recovery from operations is good as she does not anticipate pain. She had her thumbs straightened at a young age and later had her right patella removed. After this, she was still not walking well and it was suggested that a wedge of bone be removed. It meant 12 weeks in a plaster cast so we knew it would be a difficult time. Just before she was due to go back to the hospital for removal of the first cast, we went to a healing service and I wheeled her to the front for prayer. When we went to the hospital she came back with her leg wrapped in a crepe bandage. The bones had set well and there was no need for her to have a second plaster.

What other surgeries has Leanne needed?

Leanne suffered a twisted bowel in her 20's. The surgeon operated and led us to believe he had cut out a piece of the intestine. Meanwhile he had just straightened the offending area. After we moved to South Africa the problem flared up several times causing vomiting attacks. She was admitted to hospital and late one evening they operated and found she had a mega colon and gangrene had set in. She was in ICU for three weeks. The following morning the church was on its knees praying for healing as she was on the critical list. About eight weeks later she returned home with a colostomy which has since been closed.

In 2007 she had a troublesome mole removed. It was found to be malignant. They operated a second time to make sure there was no further trace of cancer and to date she remains clear. She knows about the melanoma but cancer is never mentioned because she knows and understands what it can do to you.

She has also had multiple surgeries to remove eyelashes that caused irritation and weeping eyes.

Leanne’s Story – Born with Rubinstein-Taybi Syndrome - Part 1

Leanne's story is one very close to my heart – she is my sister. She has lived with my parents since she was born and I asked my mom to share what it's like to care for a disabled person.

Tell us about Leanne's birth

Leanne was born December 29, 1966, by Caesarean section and weighed 6 pounds, 3 ounces. This was in Zimbabwe. She was tiny but wide awake, always wanting her bottle and appeared fine apart from her thumbs which were turned outwards. From day one she seemed prone to vomiting and consequently did not gain weight. At six weeks I had to take her to a specialist for a check up and it was when he measured her head that I began to wonder about retardation.

What was Leanne's diagnosis?

I found that the doctors had advised against telling me until I was stronger - and then no one uttered a word to me. Her condition is known as Rubenstein-Taybi syndrome and it can range from very severe to very mild. Some children are unable to speak; others have no feeling - they could put their hands in fire and feel nothing. Rather than feeling sad when I was told, I was challenged, particularly when the specialist said she would be "totally ineducable". Years later I found out that the Prayer Healing Group at my Church had prayed for her weekly, knowing there was a problem, but not knowing any details. This continued over some years.

How does this affect Leanne?

Leanne is a moderate case with an IQ in the 60s. She talks well and reads with comprehension. Her writing is poor but her spelling outstanding. Muscle tone is her greatest problem. Her thumbs were broken and straightened when she was very small and while not perfect, they look better than they were.

Did Leanne go to school?

When she was three years old it was suggested that she go to a school for the mentally disabled. A bus picked her up from home and returned her in the afternoon. At that time Leanne was not toilet trained and could not walk. She seemed reasonably happy there but as her mother, I was not. She had already made it clear that she was going to be extremely difficult to feed and hated meat and vegetables. The school insisted on forcing it down her and she often vomited it back, either there or later at home. After a year or two, a teacher who knew my father, said Leanne was in the wrong place and that I should move her. That was all I needed to hear!

Abby’s Story – Life with Spina Bifida – Part Two

Abigail Brauteseth was born with spina bifida and hydrocephaly. This is part two of her inspiring story. You can read part one here.

What progress has Abby made over the last few years?

Abby has progressed in many areas and through the grace of God, has pushed through many limitations. She has developed from dragging herself to crawling properly at just over a year of age. At two years she started to pull herself up, later using a granny walker followed by crutches.

Emotionally she has developed into a courageous little girl. My husband often tells her that she is the bravest girl. She has had seven operations, and many days of illness, mostly from urinary infections prior to a bladder operation when she was two years old.

      What challenges – physical and medical does she face on a daily basis?

Nerve damage has caused Abby to be paralyzed in her feet and ankles, and certain muscles in the legs and buttock have less nerve supply. As a result her right hip is dislocated. She walks with a gait, relying on her crutches. She longs to be able to balance freely and run and dance like her friends. Despite this God has given her such tenacity that she never stops trying. The nerve damage has also affected her bladder which causes incomplete emptying and incontinence. Without intervention, this can lead to kidney damage. Abigail also has a challenge with her bowel, and needs help to prevent constipation and blockage. Abigail has a slight squint and is longsighted in both eyes, so she wears glasses.

Describe an average day in Abby's life

As soon as Abby wakes in the morning I need to be ready to get her toilet needs out the way. This involves catheterisation and a bowel washout. We always try to keep it fun. She has to sit on the toilet for about ten minutes, so she gets to read or hold her rabbit, or budgies. She helps dress herself and needs to put on her ankle foot orthotic (Afo's) splints, which give the support and protection to her feet for walking.

Abby’s Story – Born with Spina Bifida

Terry and Claire Brauteseth lead a church in South Africa which I was part of for several years. Their third child was born in 2004 with Spina Bifida and hydrocephalus. This is part one of their story of heartache and triumph.

How and when did you discover that Abby had spina bifida?

It was two days before Christmas 2003 and I was 25 weeks into my pregnancy. Joshua (5) and Hannah (4) joined us with great anticipation, wanting to see their new baby. The technician found her way through the gel on my bump and our baby came into view. We saw her face change and fear began to rise in the room. She had discovered our baby had hydrocephalus. As a registered nurse I had a fair understanding what that meant and the tears began. She rushed off to call the specialist obstetrician to confirm the diagnosis. Terry squeezed my hand and did not let go. Josh and Hannah were given an apple each and perched on chairs with puzzled faces.We were told our baby had a narrow passageway in the brain which was causing fluid to build up. If left uncorrected, it would cause continual enlargement of the head, and inevitable damage to brain tissue. A second scan revealed a small opening in our baby's spine which was allowing cerebrospinal fluid and nerve tissue to protrude from the spinal cord.

Was abortion offered as an option?

The doctor rushed off to photocopy some of his medical notes on these abnormalities and gave a brief explanation of what it meant. We were told to go home, chat to our GP and consider termination. We had a week to decide as I was so far in my pregnancy. "Consider your two healthy children." he said.

Family Dynamics and a Disabled Child

 

All parents dream of raising the perfect child. When their baby is born, they count the fingers and toes and wait anxiously to see if there are any serious problems. When the doctor pronounces the child normal, they relax and begin to enjoy parenthood. On the other end of the scale, many parents are presented with a child that has obvious disabilities and medical issues. Understanding how this diagnosis affects a family can enable friends and extended family to support them in the best way possible.

Many Children are Born Disabled

I did some research and came up with the following figures for some of the more common causes of disability at birth. In the United States, approximately 5000 babies a year are born with Down Syndrome. Another 10,000 are born with cerebral palsy and 1500 with Spina Bifida. That's 16,500 families that are affected and of course there are thousands more born with other disabling conditions.

Accidents and Disease also Cause Disability

Some children are born normal and later become disabled due to accidents or disease. Head traumas are a common cause of disability and are often caused by falling off a horse or bicycle or as the result of a motor vehicle accident. Near drownings can also cause brain damage resulting in physical and mental problems. In some ways, it is harder to have a normal child who becomes disabled later in life.

Living Arrangements for Disabled People

Over the last few decades, the international emphasis on caring for the disabled has moved in a new direction. Instead of forcing people to live in impersonal institutions, many are now offered the option of assisted living. This takes the form of specially adapted homes with caregivers who supervise and assist the residents 24/7. The idea is to provide a safe comfortable environment that feels like a family home. This is the case in Christchurch, New Zealand, where I live, and I recently had the opportunity to talk to some people who are involved in assisting with this program. I hope their stories will inspire you to do something in your area.

Independence for the Disabled

Disabled people look for assisted living for a number of reasons. Some desire a measure of independence. Others can no longer rely on aged parents for care or family members may ask them to move out. It can be a positive move as the residents in the homes tend to bond together and form their own family unit.

Home Environment

Some of the homes in the Christchurch area can house six residents. They are specially adapted with big bathrooms, rails and wheelchair ramps and each person has their own bedroom, individually decorated. Just as in a normal family, there is a diverse mix of age, ability and health issues. From this chaos, friendships form and routines develop making the home feel like home.

The Enrich Chaplaincy

This is a Christchurch initiative that provides spiritual care to the residents in these homes. Their vision is to encourage respect, understanding, belonging to community, contact with family and friends and connection with God in a way that is relevant and meaningful. As part of this, they have involved volunteers from several churches in the area.

The Disabled in Work Situations

 

Why do people work? The main reason is to produce an income that provides for daily needs. Work is part of life and whether paid or unpaid, the majority of us work. Because we generally spend many hours working, our job tends to define who we are. When strangers meet, the first question is normally, "What do you do for a living?" Our answer can reveal volumes of information. Are we happy in what we do? Are we proud of our career choice? Am I nursing because I have a compassionate heart? Do I sell insurance and hate every minute of it?

What about Work for the Disabled

Because I'm aware of the disabled, I notice them when I'm out and about and have even spoken to some about their jobs and the way they feel about them. In some ways their jobs are even more important as their employment shouts a message. "I have value. I am capable. Someone believed in me enough to employ me." While I can't solve the problems of employment or lack of, I can share the stories of some people I have met over the years and hope they will give you fresh insight into the world of the Disabled.

Leanne's Story

Leanne is my sister. Born with Rubinstein-Taybi Syndrome, she has an IQ of around 60 and multiple physical disabilities. These include poor balance and knee problems that affect her ability to walk. Leanne was born with bent thumbs that needed to be surgically straightened. This left her with stiff thumbs with no joint in them. Hold your thumb straight and try and write, cut a steak or pick up beads and you will see how restrictive the lack of movement is. In spite of this, Leanne has worked at a sheltered workshop for years. Many cities have these types of facilities where firms contract out simple tasks like sorting, counting and packing. The pay is minimal but Leanne is surrounded by friends and has the joy of accomplishing something. Her jobs have included sorting electrical components, counting out screws to be bagged and counting chocolate bars to be packed into boxes. She loves her work and talks about it to anyone who will listen.

How Does it Feel to have a Mental Disability?

 

I recently spent the night in our local emergency room. At lunch time of the previous day, I noticed a few itchy spots on my chest but dismissed them as a mild skin irritation. By evening they had spread under my arms and down onto my legs. The itch was annoying, but I thought it would pass so went to bed as usual. I woke up at midnight and realized something was seriously wrong. A look in the mirror revealed my eyes and lips were swollen and the spots had changed into painful welts. I woke my husband up and shared my concerns that I was having an allergic reaction and heading towards anaphylactic shock.

To condense the story, he bundled me off to the ER and I was seen immediately. The doctor diagnosed an acute allergic reaction (we still don't know what triggered it) and started me on a drip loaded with steroids and antihistamines. My dear husband went home to bed and I was left on my own, linked to oxygen and heart monitors and seriously unhappy with how my night had turned out.

You may be asking what this has to do with mental disability ... well they warned me the drugs would make me drowsy but didn't say they would also slow my reactions. I lay there for over three hours, struggling to make sense of what was happening around me and battling to communicate. I recall asking a few questions and thinking that my voice sounded odd – slow and almost slurred. I knew what I wanted to say but I couldn't express it. I felt stupid, slow, and embarrassed. The staff knew I was somewhat out of it and talked around me and over me. When they addressed me, they spoke slowly and clearly so I would understand. When the drugs wore off, the hives were gone and my brain and voice slowly returned to normal.

Understanding the Deaf Culture

Until recently, I hadn't given much thought to how deaf people function in a hearing society. That changed a few weeks ago when I had the opportunity to interview a deaf person. This was in preparation for a special service we were holding to celebrate New Zealand Sign Language week. There are several people in our church who are involved with the deaf community. One is a qualified interpreter and the others have a passion for interacting with the deaf. Subsequent to the service, I had the opportunity to receive four hours of instruction in sign language. While it was just a basic overview, I feel confident that I could now introduce myself to a deaf person, spell out my name and ask a few simple questions.

Deaf Culture

 Deaf people, unlike members of other groups, have their own language, social clubs, athletic leagues, theater companies, universities, periodicals, TV programs and international Olympics. Unless the parents are deaf, this culture is not passed on through them but comes formally and informally through schools for the deaf. Deaf people often ask each other which school they went to as this conveys information about their influences and cultural roots.

 Is deafness a disability?   

Many deaf people do not consider themselves to be disabled - they simply cannot hear. In fact, most of them are content as they are and live productive fulfilled lives. Although they live in a hearing world, they have come up with creative ways to manage the limitations imposed by deafness. Flashing lights warn of doorbells and texting has made telephone communication easier. Their problems seem to arise when they have to interact with the hearing sector of society. Medical experts often treat deafness as a pathology that needs to be cured and this attitude is not well received by the Deaf Community. I was surprised to hear that cochlear implants are often regarded as denigrating to the group – like straightening hair or lightening skin. They prefer to be accepted as they are and not as people with a problem that needs fixing.

Looking for Beauty in the Disabled

Thefreedictionary.com defines beauty as the quality that gives pleasure to the mind or senses and is associated with such properties as harmony of form or color, excellence of artistry, truthfulness, and originality. While the majority of people will recognize beauty in a colorful sunset or gorgeous model, there are many types of beauty that are not widely appreciated. Beauty in those with disabilities is one of these areas.

How are Disabled People Perceived

Although many people with disabilities appear 'normal', there are many that have physical features that define them as being disabled. Down's Syndrome is a condition that most people are familiar with. It is normally characterized by a small head, upward slanting eyes, rounded cheeks, abnormally shaped ears and short stature. In modern society, these features are not considered beautiful and those with Down's Syndrome may be mocked because of their looks. That is not to say that society is right. There are many people with disabilities who are incredibly beautiful . . . if only we knew how to recognize it.

Understanding Beauty as God sees it

Our perception of beauty is often superficial whereas God looks deeper and sees the beauty that emanates from heart attitudes and inner feelings. Instead of judging people by what we see, God would have us look beneath the surface for the beauty of caring souls, thankful hearts and worshipful spirits.

Perfection is not needed for Beauty

After oranges in a commercial orchard are picked, they go through a sorting process which is based on size and the appearance of their skin. Those of an acceptable size with no blemishes are sent to supermarkets and fruit stores. The blemished ones go for juicing and pulping. An orchard owner once told me that the difference is purely superficial. If slices were cut out of a blemished and an unblemished orange and held up to the sun, the flesh inside would look the same and would allow the sun to shine through in the same way.

Life in a Wheelchair

 

This week, Robert Norvelle (47) shares his experience of life in a wheelchair. Spinal cancer left him on crutches at the age of 13. He later developed a 'hunchback' curve in his spine and after three more surgeries, found himself in an upper body cast and neck-ring for a full year. Unfortunately, the curve was only partially corrected and he was still on crutches.

A few years later, after starting at the UofA, he found his right foot beginning to drop as he would take a step. It turned out he had another 'inoperable' tumor in the tailbone area of his spine. The doctor gave him three options: have his lower half amputated, go through radiation and chemotherapy, or do nothing. Fortunately, he opted to try the radiation and chemo. Unfortunately, he lost the function of his right leg. He could no longer walk on crutches and left the hospital in a wheelchair. He was 21 years old.

Debbie: At the time, did you find a change in the way people related to you?

Robert: Yes. Most of the initial reactions were of sympathy, since most knew me before the disability. But after a while, they acclimated to my situation and treated me pretty much as before. To the point of almost forgetting I was even in a chair until we would find me in a situation that I couldn't navigate or physically do because of the chair. They would mostly just say, "I didn't even think about it". At first that bugged me, but later I accepted it as a compliment, in that, they didn't see the chair but rather just me.

Debbie: Tell us what it's like being in a wheelchair and surrounded by able-bodied people.

Robert: I notice this at work and in the world. I am, as far as I know, the only wheelchair-bound employee at my job site. That can be intimidating at times. When I am at work or dealing with peers, I sometimes get the feeling that others think I am a token hire. That generally fades after they get to know me and what I can do. I do find it a disappointment that people pre-judge and evaluate you before even knowing who you are and what you are all about. My wife calls them stupid people, I call it human nature.

Coping with Invisible Disabiities

This week we are privileged to have Amy Wiley as our guest. Amy is in her twenties and has disabilities that are not openly obvious. She shares how she copes with daily life.

Debbie: You have conditions that could be classed as invisible disabilities. Can you tell us about them and how they affect you?

Amy: I have fibromyalgia, orthostatic intolerance, and a vision-related learning disability. Fibromyalgia causes a whole list of problems, and the severity of the symptoms vary from day to day, or even from moment to moment. The biggest issues for me are widespread pain, fatigue, difficulty sleeping, and cognitive problems, also known as brain fog or FibroFog. I am always experiencing some level of pain, fatigue, and sleep disturbances, but they can vary from just annoying to severe enough to bring my life to a stop. I can't stand still for long and have trouble if I sit for long periods of time. Sometimes walking is painful and being out in the cold increases my pain, so I use a disabled parking placard

The FibroFog tends to come and go more than some of the other symptoms. Some days it isn't there much and other days it causes major problems such as having trouble using and understanding language. It can also affect my short term memory and general processing skills.

Adapting to Disabilities

This week I'm featuring an interview with Jan Ackerson. Jan is mother to a disabled adult and shares snippets of her journey to accepting her daughter's injury.

Debbie: You have a daughter in a wheelchair. Can you tell us how this came about and when?

Jan: Jericho was in a horseback riding accident when she was 18 years old and in her freshman year of college. She sustained an incomplete spinal cord injury at about waist level. This was eight and one-half years ago; since then she has regained enough function that she is able to walk somewhat - she uses two canes, and has braces on both legs. However, walking any sort of distance is very slow, so she uses a wheelchair several times a week.

 Debbie: What range of emotions did you experience after the accident?

Jan: Well, first there was intense fear - not knowing the extent of her injury, and not knowing what the implications for her future were. We grieved for her and with her. She had been a vibrant, popular, and active young woman, and we mourned with her that loss of life. Then we dealt with anger - at the stables, for their inadequate supervision, and even at God. It felt at times that He had removed His hand of protection from Jericho. We were angry at people who said all the wrong things. There came a point, however, that the negative emotions faded away, and we were all at peace. I still deal with periodic episodes of depression, especially around the time of the 'anniversary' of the accident, but the main emotion I experience now is thankfulness for God's grace.

Debbie: What were the implications for you as a parent?

Jan: Jericho had left for college and was a very independent young lady. My husband and I were enjoying the freedom of having an 'empty nest'. After her stay in hospital, she came back to live with us for a year of continued recuperation and rehabilitation. Ben's a rehabilitation counselor by profession, and his approach to Jericho was all practical: he wanted to take care of  details - getting her a driver's license, career counseling, working with her physical and occupational therapists. I wanted to nurture and care for her emotional and spiritual needs. Ben and I had some tension about that, when each of us felt that the other wasn't caring for her in the 'right' way.

When Should I Help a Disabled Person

 

Although disabled people are visible in every area of society, most people are uncertain of how to treat them. Afraid of acting inappropriately or looking foolish, they choose to ignore them, even if they are in obvious need of assistance. As I thought about this, a number of personal experiences came to mind. I'd like to share these with you, along with some simple guidelines of what to do, and what not to do.

Encourage Independence

People with disabilities, generally like to do as much as possible for themselves. If someone comes along and takes over something they are capable of doing, this can be insulting and steals a measure of their independence. I think of a lady I know, who is in a wheelchair. She was struggling to take her cardigan off and my husband leaned over to help her. She chased him away, saying she could do it herself. If a person is capable of doing something, even if it is more slowly or imperfectly than we are accustomed to, we shouldn't interfere.

When Appropriate, Ask before Assisting

In a similar vein, if you don't know the person and they seem to be having difficulty, ask before helping. This should be standard practice unless the person is in danger or there is an obvious problem. Over Christmas, I was walking through a mall with my husband, when we saw a mother battling with her teenage son. He had obvious mental and physical disabilities and had fallen over. Not realizing his mother was struggling to pull him up, he was pushing against her and trying to get himself up. My husband took it all in with a single glance and walked straight over and picked him off the floor, making sure his feet were on the ground, and his balance stable. It was a simple gesture but one his mother appreciated.

Connecting and Communicating with the Mentally Disabled

 

Many people feel uncomfortable around those with mental disabilities. The main reason for their discomfort is the fear of doing the wrong thing and appearing stupid or insensitive.

Fear of Looking Foolish

 We tend to get set in our ways and like things to be familiar and predictable. This includes areas such as simple conversations with those around us. Communication with a mentally disabled person is often unpredictable and so we shy away from it, afraid of looking foolish, of not understanding what they are trying to say and not answering correctly.

Building Bridges of Communication

Words are just the tip of the communication iceberg. When conversing with a person, we send myriad signals by the way we stand, the expression on our face and the tone of our voice. These form levels of communication that bypass words. When talking to anyone, remember to relax and consciously use body language in a positive manner. Even if the verbal communication is misunderstood, the body language can convey concern and interest. The person will receive the message that we are interested in them and care about their feelings.

What if I can't Understand them

If the person is with a caregiver or someone who knows them, they may help the conversation along by interpreting for them. If not, try and grasp the basics of what they are saying. It is permissible to ask someone to repeat something and even ask them to talk a little slower. In some cases, pointing and miming may bring clarity. The important thing is to persevere and make an effort to understand and communicate.

Human Life is Sacred

 

Life is sacred.

Life is a gift from God.

Disabilities of any kind can never detract from our humanity. Even a person with severe mental and physical disabilities, who lives in an institution, who has never spoken or communicated, is human. Psalm 139:13 tells us that God created our inmost being; that He knit us together in our mother's womb. What right do we have then, to choose to abort a life that seems to be less than perfect?

History is full of examples of people who have achieved incredible things in spite of their disabilities. Helen Keller is a prime example as is Beethoven who wrote his ninth symphony while totally deaf. Modern day examples include Nick Vujicic who was born with no arms and no legs. Nick has traveled extensively, sharing his testimony and telling people about God. On his website, he states that "God has used me to let people know in countless schools, churches, prisons, orphanages, hospitals, stadiums and in face-to-face encounters with individuals, how very precious they are to God. Secondly, it's my pleasure to assure them that God does have a plan for their lives that is purposeful. For God took my life, one that others might disregard as having any significance, and filled me with His purpose and showed me His plan to move hearts and lives toward Him."

A human life can and will impact others, no matter how impaired it seems to be. I watched an incredible video on Youtube the other day and have included the link below.

It tells the story of a little boy, who by rights, should have died before birth. Watch and see the amazing love of the parents and their friends as they celebrate Eliot's life. As his father says, "DNA that placed faulty information into each and every cell in Eliot's body, could not stop God from revealing Himself through a child who never uttered a word. Not a pulpit, not a slick presentation, not a best-selling book but a six pound boy with Trisomy 18. God found great pleasure in taking a lowly thing in the eyes of the world and showing truth." At the time of writing, Eliot's video had been viewed 1,795,345 times.

It is not our job to decide who deserves to live and die. It is our job to accept and love those that God brings across our path. It may be difficult, it may be awkward, it may be frustrating, and it may be heart-breaking, but it is God's way. Next time you see a child twisted in a wheelchair, drooling and moaning, don't stare or turn the other way. Instead make a friendly comment to the child and to the mother. Show some genuine love and acceptance. To people who are used to prolonged stares and whispered comments, a genuine and friendly greeting can mean the world.

 

Defining the Word Disabled

The word disabled brings different pictures to each of our minds. In my case, I think first of my sister and then of numerous others I've met over the years. Each of them have individual problems but all fall into the disabled category.

The Disability Discrimination Act in the USA defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities. To help us understand this more clearly, here are some broad groupings to clarify our thinking.

Physical Disabilities
These are the most obvious as they are the easiest to spot. We are all familiar with signs of disability such as white canes, seeing-eye dogs, hearing aids, crutches, wheelchairs, and prosthetic limbs.

Mental Disabilities
These people have problems with thinking and reasoning meaning that they are unable to fend for themselves or hold down certain type of employment. Impairment can range from mild to severe.

Disabled from Birth
Many people are disabled from birth and this may be genetic or due to a lack of oxygen during the birth. Conditions such as Down's Syndrome and spina bifida fall into this group as do those with cerebral palsy.

Disabled Later in Life
This is often due to an accident that causes brain damage, paralysis, or other injury. Disease also has a role to play and conditions such as multiple sclerosis and Huntington's can eventually lead to disability.

This is a very brief, basic overview and is just to get us thinking about the huge range of disabilities. Within each group, there is a complete spectrum from mild to severe and many people have more than one disability. It is no wonder many of us feel unsure of how to relate to the disabled and uncertain of how our efforts at communication will be received. In my next posting, we will examine the first step to loving the disabled and that is recognizing their humanity. I hope you'll join me as we launch into this wonderful journey of exploration and discovery.
 

Desiring to Understand the Disabled

Disabled people are an integral part of our society. We see them at the mall, in the street, at church, and aboard public transport In fact, pretty much anywhere we go. The problem is that many of us don't know how to relate to them. The result is we look the other way and keep on walking. I'm hoping the thoughts I share through this column will help bring about a deeper understanding of how to feel comfortable around the disabled. You might ask what my qualifications are. The answer is years of experience of growing up with a disabled sister.

Leanne was born in 1967 with Rubenstein Taybi Syndrome. This genetic condition is accompanied by myriad physical and mental disabilities and Leanne has an extensive medical history. Over the years she has endured dozens of surgeries on her right knee, both thumbs, bowel, teeth, eyes, and more recently, the removal of a melanoma and skin grafts to repair the surgical site. She has limited mental capabilities and is very unsteady on her feet, preferring to have someone to lean on as she walks. In her younger years she was in a wheelchair between surgeries and also had a colostomy for months, following an extended period in ICU.

Leanne's education was spread across several schools and institutions and, in spite of doctors declaring her ineducable, my mother persisted and succeeded in helping her to learn. Although her grasp of number concepts is weak, Leanne learned to read and her favorite book is the dictionary. If she hears a word she doesn't understand, she will look it up and read the meaning aloud.

Intro: Daring to Love the Disabled

People with disabilities have needs, desires and dreams, just like any other person. Their biggest problem is often the attitude of those around them. They tend to be overlooked, talked down to or completely ignored. The reason is often fear; what do I say to them, do they need assistance, how much do they understand? Come with me as we embark on a journey of learning to communicate with the disabled and integrate them into our lives in a positive and meaningful way.

By, Debbie Roome

Column Posted Every 1st and 3rd Thursdays of the month.