There is very little more daunting than a catastrophic life-change caused by illness, accident or natural disaster, creating setbacks with enormous consequence physically, emotionally and financially. Every day of the year, thousands of people go through an endless scenario of suffering due to enormous changes brought on an individual, whether through their fault, someone else's, or no fault at all. To pass blame is not the issue; to move forward is the cure. The question: "How does one move forward when odds are against the happening?" Rings loudest to the injured party and leaves others standing afar while shaking their heads in dismay with no solution.
Few people not facing the struggle want to hear about someone else's problems because in most cases, they do not know or have the answers that will provide an instant remedy and do not want to end up feeling worthless to the cause. Individuals finding themselves alone seem to struggle the hardest with coping; persons under age 25-years the most ambitious, between 26 and 45-years usually focused, and over 46-years reminiscing of what could have; would have. The latter often perplexing because if it is there and right - why not do it?
Too often concerns are with public opinion instead of what may be important to an individual seeking fulfillment that could eliminate a temporary void and possibly enlighten or maybe provide a better prospective for a future. While finances play an important role with capabilities, attitude may often be the greater force preventing the happening. There is simply no quick remedy for financial wealth and the odds of becoming a sudden millionaire following a catastrophic life-change depleting resources are very slim.
In fact, catastrophic life-changes are costly in more ways then one, often affecting health, emotional stability, loss of work, income, and a variety of other common necessities or lifestyles usually taken for granted. In some cases, the list goes on with family or peer support suddenly diminished. Rare are compensations and in most cases, financial replacement for the greater loss never develops because there is no wealth large enough to eliminate the full exposure of the occurrence.
In reality, a person faced with a catastrophic life-change must first accept the change and surge onward with the challenge, but this is not an easy task when there are horrendous obstacles in the way and it is even more difficult when it strikes someone in the pocketbook. Nothing is "easy", free, or a given remedy; nothing takes away the nightmare, pain or frustrations, but if a person digs deep enough they may find solutions that will at least provide some sort of assistance in some cases, but not all. Obtaining solutions are never easy, especially if one does not know what to look for or is "aged-out", per so-called requirements of the "system". Nonetheless, accepting catastrophic occurrences and lifestyle changes that incur serious difficulties, will ultimately help with overcoming the dilemma, and then assist in realizing potentials of "the cure".
Julia Hollenbeck
The Challenges of Mobility
Revised © 2002; 2004
People with physical disabilities who must use wheelchairs as a means of mobility typically have personal challenges to contend with daily. Such people who function independently should not withdraw from activities outside of the home because of obstacles in society, but in order to overcome this dilemma, may first have
to develop an attitude. For example, a person may need to become oblivious to the stares from others which ultimately seem to ask, "What are you doing out here?"
In our small world of freedom on wheels, a good sense of humor helps. On the other hand, one cannot blame people for staring: A large van pulls up, slowly parks itself in a slot, then the doors magically open, and a lift thuds down loudly.
A black wheelchair emerges from within the van carrying a person, zips to the edge of the platform, and the lift silently descends to the pavement. Who would not stare? Some people are seeing this for the first time; why should their mouths not drop open?
For people who cannot regain their composure, a quick remedy might be to offer to let them experience the lift for a dollar. This offer could develop into a smile, a good laugh, or perhaps bring you some extra cash.
Our challenges come in all shapes, sizes, and when least expected. Think of the number of times a young child has grabbed the handles on the back of your wheelchair and tried to push you, or moved the toggle that controls the movement of the power wheelchair.
The image projected to a child is that of seeing a wheelchair pushed by an adult. The child will feel he is helping by attempting to push the wheelchair, and until the child is taught not to grab the handles of a wheelchair, the youngster will simply not know any better.
What child does not want to imitate the actions of an adult? The same applies to hand controls on a electric scooter or power wheelchair, because the curiosity of a child is normal. Guarding hand controls on a wheelchair is extremely important for the safety of all concerned.
Often, children run and play, darting in and out of areas, suddenly appearing out of nowhere. They stop, standing directly in front of you with eyes open as big as saucers, staring at you as if in a trance. You are lucky to stop your wheelchair in time to avoid running one of them over.
Their feet seem planted to the ground, unable to move until their mother arrives to grab their hand, and jerk the child aside while glaring at you as if you had done something wrong, or scold the child for getting in the way.
It is true that all cities should have ramps or curb cuts instead of high curbs to hurdle at every corner, that we have the same right to be out in public, and a lot has been done to make life easier for people with physical disabilities requiring wheelchairs.
However, much is still lacking, both within the system and the body of society itself. "Can anything be done to help society cope with the newer, growing generation of people with physical disabilities and their freedom on wheels?"
Many cities have spent thousands, no millions, of dollars improving the passage for us on sidewalks. Yet, service facilities that should be more sensitive to our needs have done little or nothing. A few examples are: The post office, banks, service stations,
public parking, and rest rooms. Services that the entire population needs are not always available for the wheelchair patron. While realizing great strides have been made for the benefit of people who have physical disabilities, it is amazing to realize
so many businesses still do not comply with the law, which brings wonderment if our lawmakers forgot about the wheelchair user and freedom in America.
For instance, service stations are far behind the times in providing access to the wheelchair population. Most stations have lowered their gas pumps but have given little thought to providing sufficient room for a wheelchair to access in-between the vehicle
and pump to fill their gas tank. If you park too far away, the hose for the gas will not reach the opening of your gas tank. People may also have arms too weak to lift the gas pump. Nearly all of the full-service gas stations have been replaced with "convenient
food store" fuel stations without outside attendants. Few employees at these convenient fuel stations are trained on how to help a patron in a wheelchair. Often, employees who are trained, operate alone in the store, and are not required to help because they would
have to leave the convenience store unattended. For the traveler in a wheelchair, a convenient fuel stop can become a nightmare. With just a little societal awareness, these problems could be corrected, and the wheelchair driver would not be having to call either the
service station by cellular phone, asking another patron for help, or resorting to calling the police department.
Most discouraging are parking spaces in shopping areas. Here again, the city and store owners have spent big bucks changing parking signs to read "Van Accessible", but guess who parks in them? Most often, it is not a van with a lift. Worse yet is the fact that no one seems
to be able to control who parks in the van accessible parking stalls. The police do not usually issue tickets or have compact cars towed off.
Is it not odd that van accessible parking signs do not contain the words: "Parking Only"? (Changing the existing signs to read
"Van Accessible Parking Only", or "Accessible Van Parking Only") Just think: two little additional words on a sign might make the difference for someone in a wheelchair! The proper law assistance needs to solve problem areas. The pitfall here appears to be
education, and the media could be a real asset to a "roll" in the right direction.
This perfect example of a good sign was finally seen in a parking lot to the Vanderbilt Medical Center in Nashville, Tennessee, in 2004 nearly 15-years after the Americans with Disabilities
Act was set in place, and the revision to the Code of Federal
Regulations implemented in July 1994.
The bare challenge of just going to a department or grocery store can develop into a comedy of errors that would make a person want to remain at home. Aisles are frequently too narrow, displays can be in the way, and you are fortunate if the wheels on your chair do not latch onto
something that causes a large crash as you pass. For the most part, people can be helpful. Sometimes too helpful, and one may feel as if they are being rushed with their shopping. The real challenge is determining what and how much to buy, finding ways to get everything needed in
one shopping trip, and back to your home. This goal can be accomplished, believe it or not, depending on exactly how ingenious the person using a wheelchair can be and whether or not the grocery store you shop at is willing to provide the assistance needed.
If the grocery store is not, you might consider finding one that is.
Heights of counter tops leave a lot to the imagination, with thoughts of wondering what it would be like if everyone had to conduct business at a counter top he or she could not see over. It would be a strange world if everyone had to sign paperwork at forehead level.
This difficulty is most often found by people who use wheelchairs in banks, and believe it or not, in post offices! Even though most banks and post offices now have lower counters for wheelchair users, they are seldom available because a clerk is not there.
Education lacks among employees (obviously). What is a patron using a wheelchair to do? (1) Wait in line with the rest of the people, and (2) head straight for the counter that is the proper height, insisting service be at the counter set in place for their use.
Finally, there is the hostess in restaurants that invariably seats a person using a wheelchair in the direct line of traffic within an aisle. While trying to consume a meal, the back of your wheelchair gets jarred when a person walks behind you, and accidentaly trips
over the rear wheels. The knowledgeable hostess will position you away from a direct line of traffic. Worse yet are the many inaccessible restaurants. Especially, if you just want to enjoy a cocktail in the bar or smoke a cigarette after eating, because an increasing
amount of restaurants now have their smoking sections and cocktail lounges three stairs up, with no access ramp. The best is to go through all the frantic manipulations to park a vehicle, lower and raise the lift to get the wheelchair out, and fight one's way around
the parking lot only to discover a person using a wheelchair cannot eat in the restaurant because there are only booths available. (These establishments need to correct their inadequacies in come into compliance.)
The same holds true for public rest rooms. Many are not accessible or just not available. It is amazing how many persons use "handicap" (No such thing - it is either accessible or it is not accessible.) stalls designed for wheelchairs, not using a wheelchair, or with any apparent difficulty, in a restroom that is not even crowded.
It is no small wonder why many people with physical disabilities using wheelchairs for daily mobility have the tendency to become recluses. Sadly, it appears the "normal" population lacks awareness, and that society has two problems: 1) Providing services for patrons that use wheelchairs and 2) Educating the "normal able bodied" population to a better understanding. In all fairness, not everyone is ignorant. There are many "normal" beings in society, who have the awareness, and help the wheelchair brigade meet some of the challenges in the world today.
Years ago, it was not uncommon to hear an adult say, "Don't bother those people; there is something wrong with that man; he is in a wheelchair." Meaning no harm, those adults just did not know how to face a disability, nor did they want their child to add to a person's "problem". None-the-less, this planted a seed of stigma, similar to the persistent weed we fail to remove from our lawns. Left alone, it grows and spreads. People unable to face the "problem" simply do not know how to react. Attached to the other end of facing our own disability is the fear of rejection. Although, it does no good to be fearful of rejection, because the "Reality of fear is in fear itself". (President Franklin D. Roosevelt)
Most of us hate having to start using a wheelchair. We have difficulties adjusting and are terribly self-conscious. We are faced with the same fears of acceptance and trying to cope in a society that is now foreign, filled with challenges unbeknown to us previously. We are different, we use wheels instead of legs, and we are a minority. Why are we afraid? There are lots of reasons: Someone we knew might see us, we might have trouble with our wheelchair, and we might have trouble with our van. How will we shop when we are not even able to see over the clothes racks and service counters; what will we do if we need help? What do we look like? Do we look disabled? How will we fit into this now foreign society? We are all afraid of the unknown, but these fears can grab your heart and soul, removing you from society.
Developing an attitude to face the fear in order to maintain a quality of life is part of the new challenge. Almost any obstacle can be overcome once the fear is set aside. The truth of the matter is that it is perfectly normal for us to feel self-conscious, out of place, and disabled. Overcoming the roller coaster of emotions and fears will happen when you no longer give yourself the choice of staying home. Your appearance will play an important role in the attitude change, not neccessarialy because of what you are wearing, but because of what you feel inside by what you exhibit on the outside. The inner strength of being a survivor will be there the first time you force yourself outside alone and no longer care who does or does not see you. From that point forward, everything changes.
Attractive Dress Equals Success!
Soon you learn to cope with friends expressing their sorrow at the sight of you in a wheelchair. You experience the limited ability of society to cope and accept making adjustments for your own benefit. Finally, you discover it is only a small part of society, who cannot accept people using wheelchairs because of their own fears. Ultimately, you find humor in the ignorance that should never have been there in the first place and find your own comfort zone with how you will appear within society.
In conquering our fears, we learn to accept our disability because there is nothing that we can do to change it. It may take months to realize the adjustments you made were a small price to pay, for the ability to function within society in order to enjoy the world around you. You may always be at odds with yourself, in forcing a smile, feeling as if you are performing for an audience, paving your way to some sort of acceptance, and normality. It is difficult to leave the comfortable shelter of your home, knowing you will be stared at and probably get in the way of others. However, each time you enter this now not-so-foreign world, it gets better, and even with the challenges many, you will find ways to overcome most obstacles. Keep in mind, there is little that cannot be accomplished, without the use of your legs by using creative thinking and determination.
With the help of advanced technology, people with physical disabilities using wheelchairs as a daily means of mobility, are merging with the rest of the world. Despite occasional setbacks, we are becoming more vocal, more visible, and more "normal".
Slowly, the rest of society smiles back and you seldom read sorrow in their eyes. Even young children smile; a few get bold and wave. It is a quick, jerky, somewhat hidden wave so cute it swells one's heart.
Learning from these experiences and adjusting attitudes provides the inner strength we need to face another challenge tomorrow. Gaining acceptance in society may well mean people with disabilities using wheelchairs, will have to obtain stronger personalities, to break the ice and remove barriers.
Regaining a place in society is worth the challenge, for the benefit of many more who will ultimately follow.
When You Meet A Person Who Uses A Wheelchair
The following article was taken from the handbook entitled "Free Wheeling" published by the Regional Rehabilitation Research Institute on Attitudinal, Legal and Leisure Barriers, Washington, D.C.
It is estimated that at least 25 million persons have mobility problems. Of these, approximately 500,000 use wheelchairs. People use wheelchairs as a result of a variety of disabilities, including spinal cord injury, multiple sclerosis, muscular dystrophy, arthritis, cerebral palsy and polio.
Wheelchairs provide mobility for persons with paralysis, muscle weakness, lack of coordination, nerve damage, and/or stiffness of joints. Wheelchairs come in many sizes and shapes which are adapted to the lifestyle of the user. They range from custom-designed models for sports activities to basic utility models for use in hospitals and airports.
Despite their active participation in our society, most people who use wheelchairs encounter attitudinal barriers which affect their lives on a daily basis.
- Do not automatically hold on to a person's wheelchair. It is part of the person's body space. Hanging or leaning on the chair is similar to hanging or leaning on a person sitting in any chair. It is often fine if you are friends, but inappropriate if you are strangers.
- Offer assistance if you wish, but do not insist. If a person needs help he/she will accept your offer and tell you exactly what will be helpful. If you force assistance it can sometimes be unsafe as when you grab the chair and the person using it loses his/her balance.
- Talk directly to the person using the wheelchair, not to third party. The person is not helpless or unable to talk.
- Don't be sensitive about using words like "walking" or "running". People using wheelchairs use the same words.
- Be alert to the existence of architectural barriers in your office and when selecting a restaurant, home, theatre or other facility, to which you want to visit with a person who uses a wheelchair.
- If conversation proceeds more than a few minutes and it is possible to do so, consider sitting down in order to share eye level. It is uncomfortable for a seated person to look straight up for a long period.
What Can You Do?
Don't park your car in an accessible parking place. These places are reserved out of necessity, not convenience. The space is wider than usual in order to get wheelchairs in and out of the car and is close to the entrance for those who cannot push far.
When your department, church, civic group or organization sponsors a program, be sure people with disabilities are included in the planning and presentation.
When children ask about wheelchairs and people who use them, answer them in a matter-of-fact manner. Wheelchairs, bicycles and skates share a lot in common.
When you hear someone use the term cripple politely but firmly indicate your preference for the words "person who has a disability".
If you wish to contribute to an organization that uses a pity or sympathy campaign, enclose a note with your check saying that the cause may be good, but the method of public appeal is demeaning to citizens with disabilities. Voice your disapproval of the "poor cripple" image.
Include people with disabilities in photos used in promotional material. When people with disabilities are presented in the media as competent or like other people, write a note of support to the producers or publisher.
Make sure meeting places are architecturally accessible (with ramps, modified bathrooms, wide doors, low telephones, etc.) so that people with disabilities can be equal participants.
Encourage your community to put "curb cuts" in sidewalks. These inexpensive built-in ramps enable wheelchair users to get from place to place independently.
Include people who use wheelchairs on community task forces (transportation, building, zoning) so that your town will meet the needs of all citizens.
Make it a point to try to reduce barriers in your physical surroundings. Often these barriers have been created by architects, engineers and builders who were unaware. A simple "How could someone using a wheelchair get in here?" Will help identify any barriers.
Taken from the handbook entitled "Free Wheeling" published by the Regional Rehabilitation Research Institute on Attitudinal, Legal and Leisure Barriers, Washington, D.C. Maintained by: Disability Support Services/UND
Last Updated: May 3, 1996
Note: Wheel Me On... does not warrant Google Sponsor ads will be in ADA compliance or support web page content.
