Chapter 13
Psychosocial Adjustment

The first section of this chapter is primarily directed toward the newly injured individual. It discusses various reactions to disability and provides insights into adjustment. However, the "not-so-new" spinal cord injured person may enjoy reading this section too. You may find yourself reflecting on the early days after your own injury and re-examining the ways you relate to spinal cord injury. In addition, this section provides useful information about assertiveness training, stress management, relaxation training, time management, and setting priorities in your life. These are areas everyone can benefit from, whether they have spinal cord injuries or not.

Having a disability, such as a spinal cord injury, produces lots of questions about who you are; who you want to be; how other people, including your family, will interact with you; and how you live your life as a person with a disability. This chapter will offer some ideas and suggestions on ways to think about these personal questions. Unlike questions about your physical needs, personal and social questions have no exact answers or procedures to follow. What you decide to do with your personal and social life is up to you. Since some of these issues are difficult, this chapter will try to offer you some help.

In addition, this chapter includes information about independent living and your legal rights as a person with a disability. General self-improvement and civil rights books have made lots of nondisabled authors very rich, so you know these must be important topics! If questions regarding personal or family concerns come to mind, remember that you can talk to your social worker, psychologist, or other team member.

 
YOU ARE STILL THE SAME PERSON

Becoming spinal cord injured was probably the worst thing that has ever happened to YOU. YOU cannot change what has happened, leave it behind, or ignore it. One way or another, YOU have to deal with it. It’s not easy.

To make a very important point, we’ve purposely emphasized the word YOU in the above paragraph. Many people each year are involved in accidents that result in spinal cord injury. Everyone is unique, and this does not change after injury.

YOU ARE STILL YOU!

There are many life experiences all rolled together that make you who you are and that is not going to change just because you may have to use a wheelchair now instead of legs for getting around. To put it another way, there is no reason to assume that your personality, intelligence, style of interacting with other people, and other personal traits will change as a result of injury. If you were smart, friendly, obnoxious, hard-to-get-along-with, finicky, argumentative, bossy, or goal-oriented before your injury, chances are very good that you will be the same way after injury.

Don’t be surprised, however, if you experience intense sadness, frustration, and anger. These are normal human reactions that can occur in response to unfortunate things that happen to you. This is very common after injury and will lessen with time and new learning experiences. Tips on how to deal with these and other feelings and reactions are provided next.

 
EXAMINING YOUR FEELINGS TOWARD DISABILITIES

It’s often said that one of the hardest things about coping with abrupt onset of disability is that you’re suddenly thrust into it with all your able-bodied beliefs, attitudes, and misconceptions.

Do you know any people with disabilities? Are any friends or family members disabled? How about fellow employees or fellow students? If you have known someone well, you have probably discovered that the disability gradually seemed less important as the relationship grew. First impressions or initial attitudes are not always accurate, and they may change over time.

Many people have varying attitudes and impressions that show how they feel about people with disabilities. You may discover that you possess some of these beliefs as well, especially if your association with people with disabilities has been very limited or nonexistent. What are some common attitudes toward or first impressions about people with obvious physical disabilities? Here are some examples:

• Pity or sympathy for the individual, which often results in a condescending or patronizing attitude.
• Personal discomfort, anxiety, or fear of being around the individual with a disability. Therefore, such a person is actively avoided.
• Assumed cognitive/mental impairment because of physical disability.
• Assumed dependency because of physical disability.
• Assumed "second class citizen" status. People with disabilities may not be included in many activities or functions of their communities, or others may not treat them with equal respect.
• Unearned praise of the individuals because they are "so brave" or "have coped so well".

However, your attitudes about yourself and the attitudes of others (family, friends, and even strangers) can change. But beliefs do not change overnight. This is a gradual process that occurs with new learning and behaving. You may find that you are a "student" in the rehabilitation facility and a "teacher" on the outside who helps others to reassess their attitudes about physical disability.

 
THE ART OF LIVING

Each individual has a unique way of responding to major changes in lifestyle. How you respond to having a spinal cord injury is very personal and involves a wide variety of thoughts and feelings. Not everyone has the same experiences, but sometimes it helps to know that there are some problems that others have had to face. Others have found useful ways to cope with those problems, and these are available to you.

As mentioned earlier, it is important to consider "who you are". Some people prefer to ignore personal problems, others like to talk all the time, and others may want to call their favorite talk-show host or write to Dear Abby for advice. There are many ways to respond to personal needs and concerns. Most important, whether you read a book, talk with a friend, go to an educational group, or seek professional counseling, it is essential to choose what is best for YOU.

Almost all patients go through a "Why me?" phase when they are first injured. They ask themselves questions like, "Why did this happen to me?" "I always treated everyone fairly and did what I thought was right! So, why have I been singled out for this unfortunate thing to happen?" Or you may be saying, "I am being punished for all the wrongs I have done before my injury." Some patients bargain: "I promise to lead a good life from now on, if only I can be allowed to walk again." A very good book by Harold S. Kushner, When Bad Things Happen to Good People, describes these feelings in more depth.

Regardless of what conclusions you come to about why you were injured, you must reach some sort of conclusion and psychologically put the issue aside and look toward the future.

Different people accept change at different speeds. The process of accepting change is often called the "adjustment period". It is very difficult to estimate how long it will take you to adjust to your new lifestyle after being injured. What is important to you right after injury may not be as important later on in your life. The following example may help describe this process.

Imagine yourself learning to fly an airplane. Early on, you must learn a great deal of technical information and how to operate new, unfamiliar equipment. When you first sit in the cockpit, your attention is focused on the dials, levers, gadgets, and switches on the panels in front of you. After some basic training and practice, you will progress to the point at which you can fly to a given destination and not focus all your attention on the gadgets or equipment. These things move to the background, and your attention is focused on the open sky beyond.

A similar process occurs after spinal cord injury. You first learn technical information about how your body works and how to operate new equipment like braces, wheelchairs, end catheters. After training and practice, you begin to focus your attention on other parts of your life.

The speed of your adjustment is greatly influenced by your philosophical attitude toward life. Some people’s attitudes toward living are very flexible. They take each day as it comes. Others, though, are more rigid and have their lives planned for years to come. Their plans do not, of course, include a spinal injury. A good clue as to the progress of your adjustment is when you start thinking and verbalizing such statements as, "I wonder what the future holds for me" or "I would like to know what kind of work I could be trained to do with the amount of function I still have" or "What direction am I headed in now?"

Believe it or not, there is a positive side. Patients who have been injured for some years have said: "Life is richer for me now than it was before I became injured because I have slowed down. I have done much soul-searching in adjusting to my injury, and as a result, I have become a more mature and appreciative person. I am able to appreciate and admire things and qualities that in the past I would have missed." No one chooses to have a spinal cord injury, but as with most things in life, there is another side of the coin.

 
"NORMAL" FEELINGS

It is important to keep in mind that the personal and psychological issues you face will, over time, be less focused on your injury and have more to do with everyday life. The following discussion of feelings applies to emotions of crisis (right after your injury) as well as emotions that may come and go throughout your life. It is normal for people to experience a wide range of feelings after a major crisis. Anger, sadness, frustration, irritation, confusion, and isolation are common. How you feel is probably different from how others may feel. However, some people like to know that others have similar feelings. This section will discuss what you can do to help yourself in dealing with the emotional reactions you experience. Not all those emotions are going to be uncomfortable ones! The process of rehabilitation also involves humor, pride, hope, and a sense of accomplishment.

 
Anger

If you find yourself snapping at others, yelling when things go wrong or boiling over most of the time, know that many people experience anger. However, it may become difficult for you to work with others if that anger carries over into everything you do. A good test is to ask yourself: "Would I like to be treated the way I treat others?" If the answer is "No", ask yourself: "Who or what is getting in my way? Why am I angry?"

This kind of self-talk can help you step back from a problem, cool off, and develop a positive plan of action. Also, ask others to help you stay calm by talking about problems openly, rather than letting something build up to the boiling point and exploding in anger.

 
Humor

When was the last time you had a good, long, belly-shaking laugh? It seems that this type of "therapy" is often overlooked or discounted, especially when you are in the hospital. Recent medical writers have discussed the positive effect that laughing has upon both mental and physical health. Norman Cousins, author of Anatomy of an Illness as Perceived by the Patient, discusses how he has used joke books, funny movies, and other forms of humor to help improve his ability to combat illness. Certainly, laughing is no "cure", but it can help you deal with difficult problems, and it usually sets up a positive mood.

Some suggestions to help you find humor are:

• Spend more time with friends who make you laugh.
• Go to a bookstore and look at joke books or humorous notecards.
• Read newspaper comics or comic books.
• Rent a video cassette recorder (with some friends) and watch a funny movie.
• Start a joke contest.

 
Sadness

It is very common for someone to feel intense sadness after a major loss or significant change in health. This is similar to the grief you might feel when someone close to you has died. Some people express this sadness with tears, withdrawal, avoidance of their usual routine, or talking about the sad feelings with a close friend. These are normal, common reactions. However, when these normal feelings seem to be overwhelming, persistent, or hopeless, you should consider getting help in dealing with your sadness.

The main differences between grief and significant depression are that depression is often accompanied by hopelessness, a sense of giving up, physical exhaustion, trouble sleeping, and a change in appetite. Try talking to someone close, thinking about something positive in your future, or maybe setting out to do something enjoyable (like listening to a concert, having a special dessert, or reading a good book). If you feel like "it’s not worth trying", then talk with a member of your rehab team about those feelings. You can get some help.

 
Pride

How you feel about yourself is very important, especially in a rehabilitation setting. It influences how you look, talk, and act. Think of someone you know who is very proud and confident (not false pride). How do they look and act? When you feel good about yourself, other people will know because you care enough to groom well and present yourself nicely to others. This feeling starts when you tell yourself: "I am worthwhile as a person". Sure, you have faults, but you have some unique qualities as a person. You can learn to feel good about those qualities and that will begin to help you improve your sense of pride. A book called A New Guide to Rational Living by Albert Ellis and Robert Harper describes specific ways of improving and maintaining a positive sense of self-esteem and pride.

 
Frustration/Confusion

Having to try new ways of doing things can be both frustrating and confusing. First, try to identify the source of frustration. If you can identify a person, talk with that person about the problem as openly as you can. Clear communication helps! If talking about things makes you more upset, ask for a third party to help out or try to use some relaxation activities (mentioned later in this section) before you talk. Being calm and relaxed can help!

Sometimes you can identify why you are frustrated, but you can’t figure out how to improve or change it. Ask for help! Another person can help you brainstorm, which may lead to a solution, or you may find a way to stay relaxed in the face of some very frustrating situations.

 
LEARN TO LET OTHERS KNOW WHAT YOU NEED WITHOUT BEING RUDE

Many times, people feel upset, angry, and frustrated when they miss out on something they want. This section focuses on learning how to achieve certain things without hurting or stomping on others. This involves being assertive, without being nasty or aggressive.

There will be times when you need to ask for assistance with something you cannot accomplish on your own, or you may need to let someone else know they are doing something that really bothers you. Also, recent research has shown that people with spinal cord injuries often need to take the extra step in making some able-bodied people feel comfortable when talking to someone in a wheelchair. This often helps to set the stage for positive communication.

The following discussion will focus on three basic communication styles: assertion, aggression, and passivity. The general style will be described, followed by descriptions of specific behaviors that are typical of each style. Notice that these are behaviors, not words. It is how you say something (body language, tone of voice, etc.) that is important, not necessarily the words you use.

 
Assertion

Assertion involves standing up for your own personal rights. Express your ideas and feelings directly and honestly, but take into account other people’s feelings, too. This involves respect--respect for you and respect for other people. To do this requires that you communicate clearly and that you ask what others might think and feel. In other words, cooperation and fair play are essential to being assertive.

In assertive behavior, your body actions are consistent with the verbal messages and add support, strength, and emphasis to what is being said verbally. The voice is appropriately loud to the situation; eye contact is firm, but not a stare-down; body gestures that denote strength are used; and the speech is fluent--without awkward pauses--expressive, clear, and with emphasis on key words.

 
Aggression

Aggression involves standing up for your personal rights, but in a way that ignores others’ rights. This is not an honest way to communicate. It is almost always inappropriate and may create strong, negative feelings, such as anger and disgust.

The usual goal of aggression is domination and winning, forcing the other person to lose. Winning is insured by humiliating, degrading, belittling, or overpowering other people so that they become weaker and less able to express and defend their needs and rights. The basic message is: "This is what I think--you’re wrong for believing differently. This is what I want--what you want isn’t important. This is what I feel--your feelings don’t count."

In aggressive behavior, the nonverbal behaviors are the ones that dominate or demean the other person. These include eye contact that tries to stare down and dominate the other person, a forceful voice that does not fit the situation, sarcastic or condescending tone of voice, and parental body gestures such as excessive finger pointing.

 
Passivity

Passivity involves violating your own rights by failing to express honest feelings, thoughts, and beliefs. Expressing your thoughts and feelings in such an apologetic, self-defeating style may allow others to easily disregard you. The total message communicated is: "I don’t count--you can take advantage of me. My feelings don’t matter--only yours do. My thoughts aren’t important--yours are the only ones worth listening to. I’m nothing--your are superior."

Passivity is nonassertion and shows a lack of respect for your own needs. It also shows a subtle lack of respect for another person’s ability to take disappointments or to shoulder some responsibility. The goal of nonassertion is to appease others and to avoid conflict at any cost.

In nonassertive behavior, the nonverbal behaviors include avoiding eye contact, hand wringing, clutching the other person, stepping back from the other person as an assertive remark is made, hunching the shoulders, covering the mouth with a hand, nervous gestures that distract the listener from what the speaker is saying, and wooden body posture. The voice tone may be singsong or overly soft. The speech pattern is hesitant and filled with pauses, and the throat may be cleared frequently. Facial gestures may include raising of the eyebrows, laughs, and winks when expressing anger.

In general, the nonassertive gestures are the ones that convey weakness, anxiety, pleading, or a self put-down. They reduce the impact of what is being said verbally, which is precisely why people who are scared of acting assertively use them. Their goal is to soften what they’re saying so that the other person will not be offended.

 
RELAXING IN THIS STRESSFUL WORLD

Frequently, it seems there are too many things going on around you and no way to deal with all the daily hassles. Although no one can eliminate stress from your life, there are some ways of reducing the impact stress can have on your health. A great many health problems are directly linked to the strains of muscle tension, increased blood pressure, and increased heart rate that usually come along with stressful activities. Many people with spinal cord injuries say they find that the initial demands of rehabilitation are stressful. But even most able-bodied people you talk to will say that their days are often busy and stressful. This section offers two specific methods of dealing with stress: relaxation techniques and time management skills.

 
Progressive Relaxation

You cannot have the feeling of warm well-being in your body and at the same time experience psychological stress. Progressive relaxation of your muscles reduces pulse rate and blood pressure as well as decreasing perspiration and breathing rates. Deep muscle relaxation, when successfully mastered, can be used as an "anti-anxiety" pill.

Most people do not realize which of their muscles are chronically tense. Progressive relaxation provides a way of identifying particular muscles and muscle groups and learning the difference between tension and relaxation.

The following is a procedure for achieving deep muscle relaxation quickly. Whole muscle groups are simultaneously tensed and then relaxed. You may not be able to complete all the muscle movements, but do what you can. Repeat each procedure at least once, tensing each muscle group from 5 to 7 seconds and then relaxing from 20 to 30 seconds. Remember to notice the contrast between the sensations of tension and relaxation. Try these exercises in a comfortable position (such as in a sitting position with your head supported), and practice at least twice a day until you have mastered these exercises.

1. Curl both fists, tightening biceps and forearms, pulling your fist toward your shoulder. Relax. Allow your arms to rest at your side.
2. Wrinkle up your forehead. At the same time, press your head as far back as possible, roll it clockwise in a complete circle, then reverse. Now wrinkle up the muscles of your face like a walnut: frowning, eyes squinted, lips pursed, tongue pressing the roof of the mouth, and shoulders hunched. Relax.
3. Straighten your back as you take a deep breath into the chest. Hold. Relax. Take a deep breath, pressing out the stomach. Hold. Relax.

Since some of the actions require neck and back movement, you need to get clearance from your doctor.

You may want to make a cassette tape of the basic procedure to improve your relaxation program. Remember to space each procedure so that time is allowed to experience the tension and relaxation before going on to the next muscle or muscle group.

Most people have somewhat limited success when they begin deep muscle relaxation, but it is only a matter of practice. Although 20 minutes of work might initially bring only partial relaxation, it will eventually be possible to relax your whole body in a few moments.

In the beginning, it may seem to you as though relaxation is complete. But although the muscle or muscle group may well be partially relaxed, a certain number of muscle fibers will still be contracted. Relaxing these additional fibers will bring about the emotional effects you want. It is helpful to say to yourself during the relaxation phase, "Let go more and more". Also, focus on deep breathing when you relax.

 
Time Management

This is another important way to deal with stress. When you leave the hospital after a recent injury, you will no longer have a staff member to help schedule your activities. For those of you working or returning to work for the first time after your injury, it is essential to develop skills in planning your daily routine. Parts of the following discussion were taken from The Relaxation & Stress Reduction Workbook, by Martha Davis, Elizabeth Eshelman, and Matthew McKay.

Time can be thought of as an endless series of decisions, small and large, that gradually changes the shape of your life. Inappropriate decisions produce frustration, lowered self-esteem, and stress. They result in the six symptoms of poor time management:

1. Rushing.
2. Always being caught in the middle of unpleasant alternatives.
3. Fatigue or listlessness with many slack hours of nonproductive activity.
4. Constantly missed deadlines.
5. Insufficient time for rest or personal relationships.
6. The sense of being overwhelmed by demands and detail and having to do what you do not want to do most of the time.

Time management techniques for relieving these symptoms have been developed by management consultants and efficiency experts who teach busy people to streamline their lives. Alan Lakein, who wrote How to Get Control of Your Time and Your Life, sees himself as a "time planning and life goals consultant". Many therapists, such as Harold Greenwald (author of Direct Decision Therapy), have also contributed to time management theory by developing techniques for facing and clarifying decision-making.

All methods of time management can be reduced to three steps:

1. You can establish priorities that highlight your most important goals and that allow you to base your decisions on what is important and what is not.
2. You can create time by realistic scheduling and the elimination of low-priority tasks.
3. You can learn to make basic decisions.

Before examining the three steps to effective time management, it will be useful to explore how you really spend your time. An easy way to do this is to divide up your day into three segments:

1. From waking through lunch
2. From the end of lunch through dinner
3. From the end of dinner until going to sleep

Carry a small notebook with you, and at the end of each segment (after lunch, after dinner, in bed just before sleep), write down every activity you engaged in and those that require assistance. Note the amount of time each one took. The total amount of time for all activities should be fairly close to the total number of hours you were awake.

Unless you are particularly interested in improving time utilization at work, simply describe work activity as socialing, routine tasks, low-priority work, productive work, meetings, and telephone calls.

Keep this time inventory for three days. At the end of three days, note the total amount of time spent in each of the categories. If you wish, you can divide by three to get the average daily time for each activity. You can also order the categories from the most to the least time-consuming to get a rough picture of your current obligations.

You should modify or add categories to suit yourself. You might wish to distinguish between conversation at home with intimates and talk at social gatherings or between shopping for pleasure and shopping for necessities. You may want to have specific categories for your daily self-care activities or just a general hygiene category. You might want to break down household chores into several categories. The important thing is to separate and examine categories of time use, and then determine if you want to spend more or less time engaged in each of these activities.

 
Setting Priorities

Having made your own time inventory, you can begin to compare your current use of time to important goals.

What did you want to accomplish in your life, what are you most proud of, and what might you most regret? Limber up your imagination and put anything down that comes to mind. Don’t think about it or analyze it--if something occurs to you, write it down. Distill what you have written into your long-range goals.

Second, make a list of your one-year goals that stand a reasonable chance of being accomplished. Finally, put down all your goals for the coming month, including work priorities, improvement schemes, recreational activities, etc.

You have created three lists of goals: long-, medium-, and short-range. Deciding which are the top-, middle-, and bottom-drawer items can prioritize each list.

1. Top drawer: those items ranked most essential, most desired.
2. Middle drawer: those items that could be put off for a while but that are still important
3. Bottom drawer: those items that could easily be put off indefinitely with no harm done.

 
Breaking Priorities Down into Manageable Steps

Now it is time to break down the top-drawer items into manageable steps that can be easily accomplished.

You have goals to work on. They are your top priorities. Give them a month. Next month you will make a new list. Some goals will remain top drawer, others will drop off. The goals will always be accompanied by a list of specific steps. Set aside a certain time period each day to work on your top-drawer goals. Emphasize result rather than activity. Try to accomplish one step toward your goal each day, no matter how small that step may be.

If you are a very busy person or one who finds it hard to keep focused on top-drawer items, you will need a daily "to-do" list. The to-do list includes everything you would like to accomplish that day. Each item is rated top, middle, or bottom. If you find yourself doing a bottom-drawer item when some of the tops are not yet finished, you can be almost certain that you are wasting your time. Work your way down. When the top items are completed, get to the middle-drawer tasks. Only when everything else is done should you permit your time to go to the bottom drawer.

You will find that it is often possible to just ignore the bottom items. They may never be missed. In making and following your to-do list, it is useful to be aware of the 80-20 rule: 80 percent of the value will come from only 20 percent of the items.

It is easy sometimes to let top-drawer goals slip to the back of your mind and say, "Not today. I’ll get to it after I get the house cleaned up". One solution to this tendency is to make signs describing your current top-drawer goals and post them conspicuously around the house or office. Every time you look at them, you’ll be reminded of your priorities.

 
Making Time

There are four "must" rules and nine optional rules for making time. The four must rules are as follows:

1. Learn to say "no". Unless it’s your boss who asks, keep away from commitments that force you to spend time on bottom-drawer items. Be prepared to say, "I don’t have the time". If you have trouble saying no, see the section in this chapter on assertiveness training.
2. Banish bottom-drawer items unless you have completed all higher priority items for the day. Bottom-drawer items can wait.
3. Build time into your schedule for interruptions, unforeseen problems, unscheduled events, etc. You can avoid rushing by making reasonable time estimates for activities and then adding on a little extra time for the inevitable problems.
4. Set aside several periods each day for quiet time. Arrange it so that you will only be interrupted in an emergency. Focus on deep relaxation, using the techniques presented in this chapter.

Listed below are the nine optional rules for making time. Check three of them that would be most helpful to you. Begin the habit of following the rules you have marked right now.

1. Keep a list of short five-minute tasks that you can do any time you are waiting or are between things.
2. Learn to do two things at once. Organize an important letter in your mind while driving to work, plan dinner while vacuuming.
3. Delegate bottom-drawer tasks. Give them to your children, your secretary, your housecleaner, and your mother-in-law.
4. Get up a half hour or an hour earlier.
5. Watch less television.
6. When you have a top-drawer item to do, block off your escape routes:
   • Schedule daydreaming for a later time.
   • Stop socializing.
   • Put away the books.
   • Put away tiny, unimportant tasks.
   • Don’t run out for ice cream or other sudden indulgences.
   • Forget the errands you could probably do more efficiently later.
7. Cut off nonproductive activities as soon as possible (e.g., socializing on the phone when top-drawer items are begging to be done).
8. Throw away all the mail you possibly can. Scan it once and toss it.
9. Stop perfectionism. Just get it done. Everyone makes mistakes.

 
INDEPENDENT LIVING

Is there life beyond the hospital walls?

Yes, there is a life beyond the hospital walls, and independent living is a way to approach your day-to-day life in society. Independent living means being in charge of your life and taking responsibility for your actions. Independent living is how you live your life, not where you live. For example, some people think that being alone in an apartment is independent living. It is independent living only if the person freely chooses that lifestyle based on his or her own individual physical, social, and financial needs and on the available resources. For other people, independent living means choosing to reside in a nursing home. In the following paragraph, July Gulliom explains her choice to live in a nursing home.

A lot of people seem to feel that if they end up in a nursing home, that’s the end of life and they will never see daylight or any of their friends again. One of the facts about a nursing home is that it’s one of the most efficient mechanisms for getting an unwieldy body attended to... I have a full-time job and heavy volunteer activities. If I had to devote a lot of time to administering a mini-institution on my own behalf, I wouldn’t be able to do what I want to do. I don’t choose to spend my time that way...

The nursing home has a lot of space and a lot of staff, and the economies of scale make a lot of difference when they mean that you’re able to come and go as you please. If I arrive at two o’clock in the morning, there are people waiting to put me to bed. I really could not afford to hire someone to sit in my own house and do that for me.

How you make decisions about your equipment needs is another good example of independent living. Some people prefer to use equipment for assistance with tasks ("high-gadget tolerance"). Other people like the physical and mental challenge of doing difficult tasks, or they may prefer to limit their equipment ("low-gadget tolerance") and use "people power" when they need some help.

REMEMBER: Free choice means making a decision based upon:

• Your needs
• What you would like to happen
• The resources available to you

 
SOCIAL SURVIVOR TACTICS

A person with a spinal cord injury needs social survivor tactics because:

• You are a member of a minority group in our society.
• You will run into negative stereotypes that people have about wheelchair or crutch users.
• The general public will notice you.
• You will be dealing with agencies and bureaucracies more than the average American will!

Social survivor tactics are the tools you use to get the services, emotional support, and physical help you need. Some tools, such as the social skills of time management and assertiveness, have already been discussed. Other tools for survival and independent living include how you think through the social decisions that you face most frequently. This section will present some ways to solve basic social questions.

 
Social Decisions

Social decisions are crucial to your physical future. There are no right answers to these questions. It all depends on personal goals, and these goals can change throughout your life. Remember that these decisions are the foundation for your social and emotional survival. Listed below are two important questions.

• Where will I live?
• Will I live alone or with someone?

You will need new or different social skills to get what you want and need. Meeting new people after your spinal cord injury is really no different from before your injury. Be yourself, make eye contact, and talk sports, weather, or whatever you used to talk about.

Once you become aware of the particular social challenges that your disability may create, you will learn how to handle them. There are two major approaches to meeting these challenges. First, decide if you have the necessary basic social and communication skills that everyone needs. Second, decide if you need some special skills for dealing with common reactions to your disability.

These approaches help you think about yourself as a person first and then as a person who happens to have a disability. Many social challenges, such as finding a sexual partner, meeting new people, and wanting to be more assertive, are common to all people. Some challenges, such as having a waitress ask your companion, "What does he want to eat?", are directly related to having a disability. More often than not, the challenges you encounter can be resolved by learning general social skills (assertiveness, how to handle anger). The special skills related to your disability can include how to deal with the nondisabled population.

 
Be an Effective Communicator

People with disabilities need to understand the thinking and actions of nondisabled people. At times their actions and reactions are frustrating and difficult to understand. All communication involves two parties, and miscommunication involves two parties. When an interaction or communication is not working, you need to ask two important questions:

1. Am I using my best and most effective communication skills?
2. Are the other people miscommunicating out of a lack of information or a lack of effective communication skills?

If you are using your best skills, go to question two. If the answer to question two is that the others lack information, then you need to educate them. If they are poor communicators, then it is their problem. People with disabilities often think the actions and words of nondisabled people are cruel and intended to be degrading when, in fact, the nondisabled people may just be ignorant, not cruel. They mean well but need suggestions for more helpful ways to interact with people who happen to have disabilities.

When you are doing your best and things are still not going well, the situation may call for special skills and understanding that relate directly to your disability. For example, you must judge when and how to discuss your disability with new friends and potential employers. These skills are learned by experiencing the situations first hand, consulting other people with disabilities, and by learning (reading) about the stereotypes of the nondisabled population to find effective, useful, and productive ways of overcoming these stereotypes.

It is not always an easy task, but being a member of a social minority group often requires that you become a teacher of the general population. You didn’t ask for that role, but it does come with your wheelchair, crutches, and other paraphernalia. Learning these skills can result in increased self-determination and self-pride!

 
YOU CAN WORK IF YOU WANT TO WORK

Work is a significant part of our lives. It affects us so profoundly, both socially and psychologically, that many people identify who they are by their job titles. The other aspects of their self-description (a father, a husband, an organizer) are often secondary. A job can affect how we perceive our status in society. "Oh, I’m just a _______________". It influences the kinds of people with whom we associate. For many of us, our work is our life. The degree of satisfaction you get from your work directly affects the quality of the rest of your life.

Having had a spinal cord injury, you may be asking, "Can I work? What kind of job could I do?" The answer is: YOU CAN WORK IF YOU WANT TO WORK. W. Mitchell (who became paraplegic in 1975) says, "The way I look at it, before I was paralyzed, there were ten thousand things I could do; ten thousand things I was capable of doing. Now, there are nine thousand. I can dwell on the one thousand, or concentrate on the nine thousand I have left. And, of course, the joke is that none of us in our lifetime is going to do more than two or three thousand of these things in any event".

If job exploration and continuing your education interest you, you should meet with a vocational rehabilitation specialist.

 
FAMILY AND FRIENDS

When an acute spinal cord injury occurs, those people close to you are most likely to be as emotionally shaken up by your injury as you are. They may feel shock (numbness), disbelief, sadness, and anger as they see you move from surviving your injury through your rehabilitation process.

Their reactions may be quite familiar to you, or they may be very unexpected. You may or may not be able to understand the hows and whys of their reactions and actions. In any case, try to remember that this sudden change for you was just as unexpected and unwanted by them. Give yourself and them some time to adjust and think about all of these changes. Some tips on how to help both you and your family and friends during this time of transition are as follows:

• Try and talk about how all of you feel. By bringing it out into the open, no one has to guess how everyone else is taking it, especially YOU! They love you, and you love them, and that’s not a bad place to start.
• Since your close friends and family may be afraid to bring up the subject for fear of causing you or them more pain, you may have to start the ball rolling. It will be hard, but it may be best in the long run. Timing is very important, however. Adjustment is a healing process, so trust your gut instinct in dealing with certain issues. If either you or your close ones aren’t ready to discuss something, let it go for a little while. There will come a time in the natural course of adjustment when you will both feel right about it.
• Try not to hide all of your feelings. You don’t have to be strong for your family and friends. This only makes it harder for them to talk with you.
• Also, remember that your family and friends are part of society and may have the same misconceptions and attitudes about people with disabilities. When you’re able to, try to talk to them about this. You need to teach them the truth. Soon enough, you’ll find them educating their friends and families too!
• If your family lives close to an SCI center, they may want to attend a family support group. Check the bulletin board for day and time.
• Sometimes, family and friends go overboard trying to do just about everything for you. For some people with disabilities, this becomes a smothering experience. For others, this is merely what they always expect from their close ones. This type of behavior may be O.K., or it may get tiring for both you and your family and friends.
• Figure out how and with what you’d like to have help. If your family and friends are doing too much, talk to them about it. Let them know how it makes you feel and why you’d prefer that they not do so much for you.

After you live with spinal cord injury for a period of time, the feelings you now have about your injury may be very different from those you experienced when you were first injured. You may be more comfortable with this change in your body and what you need to do to keep it healthy.

As you became more experienced in getting around town (either by car, van, public transportation, or wheelchair), you may have gained a new sense of freedom as well. These challenges have helped you learn and adapt to this new way of life.

Adapting to life with a spinal cord injury is a unique experience. Each individual does it in his or her own way. Whatever way you have chosen is O.K., as long as it keeps you healthy, both in mind and body.

Your family and friends have also adapted to your spinal cord injury. Many have come to realize that you are still the same person they’ve always loved except for some physical changes. Unfortunately, a few may not have been able to adjust to the new physical you, no matter how much they love you. Some people just can’t. Relationships change in everybody’s life, no matter if you’re disabled or not. Being a spinal cord injured person is a challenging experience that offers a potential for growth.

 
BEING A PARENT

You can be a parent if you decide you can or want to be a parent. Many feelings and a great amount of thinking will contribute to that decision. Common feelings may be uncertainty about your ability to provide the physical care and financial support. Fear may arise about how a child will respond to you now that you are in a wheelchair. You may experience feelings of depression or discouragement that cause you to wonder about caring for another person. Or you may experience great joy and satisfaction as you realize your children need and respond to your caring and attention. You may be surprised how accepting and adaptable children are.

As you review your feelings and thinking, it is good to remember that bringing up children is a tough job and that every parent can feel uncertain at one time or another. Although your injury may change how you physically care for a child, it does not create insurmountable barriers. There are many adaptive tools, techniques, and even books that you can explore. Consult your rehabilitation team members for ideas.

When you are making changes because of a spinal cord injury, your child should be included in the process. If you are absent from the home due to a hospital stay, your children, of whatever age, need to have the absence explained at their level of understanding. You and your children need to know that a physical limitation need not change your relationship. Research has shown no difference in emotional and social development between children whose parents have a spinal cord injury and those who don’t.

It is also important to remember that your rights as a parent don’t change after a spinal cord injury. Custody of your children or your right to seek adoption cannot be denied solely on the basis of your disability.

 
Specific Thoughts to Keep in Mind

• Include your children in your rehabilitation program. Find out about visiting hours and passes out of the hospital with your family.
• Introduce your children and spouse to other parents with SCI. Have your children talk with their children.
• Include your children in family meetings in and out of the hospital.
• Continue the discussions with your children about your injury or related feelings after you leave the hospital. Seek out community counseling services that are recommended by your SCI social worker or psychologist.
• You can also work closely with your rehab team members about parenting concerns.

 
Deciding to Become a Parent

As a first step, you may wish to explore your physical capability to have children. Check with your SCI urologist and doctors. You may wish to consult with your social worker or psychologist if you are thinking about becoming a parent. If you discover you are physically unable to have children, consider adoption or artificial insemination. Take a look at the chapter on Sexuality. It may also provide some helpful information about your options.

 
SOCIAL AND LEGAL RIGHTS

 
Exercising Your Legal Rights and Responsibilities

People with SCI are entitled to the same constitutional rights as all other U.S. citizens. In addition, many federal laws support the legal rights of citizens with disabilities in the areas of vocational rehabilitation, education, transportation, accessibility, social and medical services, tax exemptions, and Social Security benefits. Each individual state has various legal rights that are guaranteed. This section identifies some of the major federal laws and shows how you, the voter and the consumer with disabilities, can exercise your rights in a knowledgeable and responsible way. We will start with some general guidelines on how you can assert your rights and get the best results.

 
Be an Assertive Citizen

1. Know your basic rights!
2. Vote.
3. Keep a record of your transactions with agencies and programs. A file folder for each agency or program is a good idea. Include the following information:
   • Date.
   • Who you talked to.
   • Copies of letters, applications, and other paperwork.
4. If you think your rights have been violated, ask to talk with a supervisor, the administrator, or the person at that agency in charge of grievances relating to civil rights.
5. Learn the appropriate channels for complaints within the particular agency, local and state government, etc.
6. It is your responsibility to:
   • Be assertive, not aggressive.
   • Learn the established steps for civil rights complaints.
   • Listen.

 
Major Laws and How They Relate to You

There are a number of laws that exist and work for you. (See table 13.A.)

TABLE 13.A. Laws that Affect People with Disabilities

 
The Rules of Laws

Federal and state legislatures are elected and then pass laws that affect the lives of citizens.

After a bill is passed and becomes a law, regulations are written. These regulations state how agencies, businesses, and citizens will carry out the laws.

Regulations are the rules of our governmental system and directly affect our daily lives. For example, the regulations issued for the Americans with Disabilities Act (ADA) are detailed requirements that greatly affect both the public and the private sector. Hardly a person in America is unaffected by the need to comply with this federal statute.

When regulations are not properly followed or you think the regulations do not ensure the rights that you are guaranteed by the law, then you can resort to legal action. The court system is set up to uphold laws and prevent unconstitutional regulations.

 
Americans with Disabilities Act (ADA)

In 1990, the Americans with Disabilities Act was passed, the most significant piece of civil rights legislation since the mid-60s. The ADA is a comprehensive ban on both public and private discrimination against people with disabilities. The five titles of the ADA cover employment, state and local governments, public accommodations, telecommunications, and miscellaneous provisions.

The law itself and regulations issued by five federal agencies are very specific as to certain requirements. The Department of Justice, the Department of Transportation, the Equal Employment Opportunity Commission, the Federal Communications Commission, and the Architectural and Transportation Barriers Compliance Board have all published regulations to implement the ADA and provide technical assistance to help people apply the law. The Internal Revenue Service provides two special tax incentives for businesses, one a tax deduction for any business to remove barriers, the other a tax credit for small businesses to comply with the ADA.

The following are the activities affected by the titles of the ADA.

Title 1 (EMPLOYMENT). No employer with more than 15 employees can discriminate against a qualified person with a disability in any area of employment. This includes hiring, promotion, fringe benefits, sick leave, etc. An employer must make reasonable accommodations to enable an individual with disabilities to perform the essential functions of a job, unless the accommodation causes an undue hardship.

Title 2 (STATE AND LOCAL GOVERNMENTS). State and local governments and all departments, agencies, and instrumentalities must ensure that their programs are accessible. These requirements apply to all parts of all state and local governments, regardless of whether they receive federal funds. The most important implication of this section is the creation of ADA coordinators for most governmental agencies. When consumers encounter disability barriers, they can now obtain information and advice from an individual who is required to be knowledgeable about disability issues.

Buses used in public transportation must be equipped with lifts; paratransit must be provided to individuals with disabilities that are unable to use the established fixed-route system.

Title 3 (PUBLIC ACCOMMODATIONS). The coverage in Title III affects almost all private businesses, services, and agencies. A place of public accommodation is a facility operated by a private entity that falls within one of the following categories:

• Place of lodging, such as a hotel
• Establishment serving food or drink
• Place of exhibition or entertainment, such as a theater or stadium
• Place of public gathering, such as a convention center or auditorium
• Sales or rental establishment
• Service establishment, such as a bank, dry-cleaner, offices of lawyers, doctors, or accountants
• Station used for transportation
• Place of public display or collection, such as a museum or library
• Place of recreation, such as a park or zoo
• Place of education, such as private schools
• Social service establishment, such as a senior center, day care center, or homeless shelter
• Place of exercise or recreation, such as a gym or golf course

Places of public accommodation must remove architectural and communications barriers where it is readily achievable to do so. All new construction is to be accessible.

Private entities that provide transportation services must, depending on the circumstances, acquire accessible vehicles or provide equivalent service to individuals with disabilities. This means that if it is relatively easy and inexpensive to take out a barrier, it must be done. Barriers include steps, narrow spaces, lack of TDD phone service, or a policy prohibiting a waiter from reading a menu to a visually impaired person. If barrier removal is an undue hardship, each entity has an identified ADA appeal process.

Title IV (Telecommunications). This title of the ADA reformed the national telephone system to include people with hearing and speech impairments. Providers of telephone service must provide "relay" service. Relay operators are middlemen in conversations between individuals using TDDs (telephone device for the deaf) and people using regular phones.

Title V (Miscellaneous). Title V provides that the Architectural and Transportation Barriers Compliance Board (the Access Board) will issue guidelines to ensure that facilities and vehicles are accessible to individuals with disabilities.

 
Section 504 of Rehabilitation Act

Section 504 and its regulations prohibit discrimination against any qualified person on the basis of his or her disability by an entity that receives federal funding. The regulations apply to every program of the federal government. Three very important areas covered by Section 504 are education, employment, and community services.

 
Ticket to Work and Work Incentives Improvement Act of 1999

The Ticket to Work program is a new approach to providing vocational services with an emphasis on customer choice of providers. It is designed to increase flexibility and will begin in some states starting in 2001, with full implementation set for 2004.

The Work Incentives Improvement Act extends Medicare Part A (Hospitalization) benefits, without any premium payments, from the current 3 years to 7.5 years. The law gives state Medicaid programs the option to provide coverage for people with disabilities who are working. Both of these programs are scheduled to take effect October 1, 2000.

Expedited reinstatement of Social Security benefits after leaving work status and a new policy of not allowing medical review of cases when a person using the Ticket to Work program returns to work are two new features of this Act. These changes are scheduled to take effect January 1, 2000.

There are some other grants and demonstration projects included under this Act. The purpose is to have more services for working people with disabilities and encourage federal agencies to grant tax credits and other employment incentives so more persons with disabilities will enter the workforce.

 
Getting an Education

Post high-school educational programs and institutions must provide reasonable access to admission exams, classrooms, testing, student housing, and support services. In some instances on-site assistive devices may be provided by the educational institution.

 
OPTIONS FOR HEALTH CARE AND FINANCIAL PLANNING

 
Advance Care Directives

Advance care directives, directives to physician, and living will are all terms used to describe the same basic document. The formats for these documents may be different from state to state or hospital to hospital. They are all for the purpose of helping you take control of the scope and type of health care you want in life-threatening situations if you can’t communicate your desires to your doctor. Hospitals and other care facilities are required to inform you about the option of establishing advance care directives. Do not resuscitate orders and durable power of attorney for health care are two other ways to communicate your health-care wishes. The following is an explanation of each.

A Do Not Resuscitate Order takes effect after you have talked with your doctor and your doctor has written the order. It is an order written by your doctor while you are in a hospital or nursing home that directs the staff NOT TO DO cardiopulmonary resuscitation. When there is no doctor’s order, then full resuscitation will occur. Some states, such as Washington, allow you to prepare a directive of Do Not Resuscitate that can be used by emergency personnel in the community. Ask your health-care provider if this option is available in your state.

An Advance Care Directive takes effect when you are unable to communicate. It is a document drafted by an attorney and signed by you that lets you specify your particular desires about health-care procedures you may and may not want done if you are not able to communicate.

A Durable Power of Attorney for Health Care takes effect if you can’t communicate. It is a document drafted by an attorney and signed by you that identifies a person who will make decisions on your behalf about health care procedures and treatment plans. You need to show this person your advance care directives and discuss your health-care wishes.

 
OPTIONS FOR ANOTHER PERSON TO HANDLE YOUR MONEY

There may come a time when you need for another person to help you manage your money. Often the terms used to describe this process are confusing and unfamiliar. Some states may have variations in the names of these procedures, but they are generally the same things. Remember, always consult an attorney if you feel you need legal help.

 
Power of Attorney

This is the paperwork signed in the state where you reside giving someone else the authority to manage your money. It can include giving the power to sell property. This type of paperwork means you and the other person can both do your business. You are sharing this power, not giving it away.

 
Veterans Administration Fiduciary

This is an internal VA process whereby a professional documents that you can’t handle your money. VA appoints an official to handle your VA money and, possibly, your income from government sources. The fiduciary has the control of your money.

 
Court Appointed Guardian of Estate (Money)

This is a court procedure where a professional signs papers saying you are unable to handle your money. The court then appoints someone to handle your money; you don’t control your money.

 
Court Appointed Guardian of Person (Social and Health Decisions)

This is a court procedure where a professional signs papers saying you are unable to make decisions about your medical care or social well-being (that you are "a danger to yourself and others"). The court appoints someone to make decisions for you. This has nothing to do with your money.

 
GETTING COMMUNITY RESOURCES

The most effective methods for getting the community resources you need are the following:

• Be assertive
• Consult your peers
• Remember patience and a smile are highly effective when dealing with stressed-out bureaucrats
• Know your legal rights

To find local resources, contact information and referral agencies, vocational rehabilitation agencies, or your state’s liaison to the President’s Committee on Employment of Persons with Disabilities.

 
RESOURCES

Publications

Depression: What You Should Know: A Guide for People with Spinal Cord Injury

The Americans with Disabilities Act: Your Personal Guide to the Law

Purchase

PVA Distribution Center
PO Box 753
Waldorf, MD 20604-0753
(888) 860-7244

Anatomy of an Illness as Perceived by the Patient.
N. Cousins. Bantam Doubleday Dell Publishers, 1991.

The Relaxation & Stress Reduction Workbook.
M. Davis, E. Eshelman, and M. McCay. New Harbinger Publications, 1998.

Social Relationship and Interpersonal Skills: A Guide for People with Sensory and Physical Limitations.
M. Dunn. Institute for Information Studies, Fairfax, VA, 1981.

A New Guide to Rational Living.
A. Ellis and R. Harper. Wilshire Book Co., 1997.

Don’t Say Yes When You Want To Say No.
H. Fensterheim and J. Gaer. Dell, 1975.

Direct Decision Therapy.
H. Greenwald. EDITS, 1973.

When Bad Things Happen to Good People.
H. Kushner. Avon Books, 1994.

How To Get Control of Your Time and Your Life.
A. Lakein. Signet, 1973.

When I Say No I Feel Guilty.
J. Smith. Bantam, 1985.

Contact: The First Four Minutes.
L. Zunin and N. Zunin. Balantine, 1975.

 
Web Sites

www.hcfa.gov/pubforms/advdir.htm
Site of the U.S. Health Care Financing Administration, provides information about health-care advanced directives.

www.usdoj.gov/crt/ada/adahom1.htm
The Americans with Disabilities Act home page within the Department of Justice’s web site, this site links to ADA technical assistance materials, DOJ’s information line, status reports, enforcement information, and more.

www.eeoc.gov
The site of the Equal Employment Opportunity Commission provides information on laws, regulations, and policy guidance regarding employment.

www.50pcepd.gov
The President’s Committee on Employment of People with Disabilities offers information, training and technical assistance on employment issues as well as links to the Job Accommodation Network (JAN), providing information about job accommodations for people with disabilities.

 

SCI Self-Care Guide Main Page Chapter 1     SCI Anatomy & Physiology Chapter 2     Skin Care Chapter 3     Circulatory System Chapter 4     Respiratory Care Chapter 5     Range of Motion Chapter 6     Bladder Management Chapter 7     Bowel Management Chapter 8     Nutrition Chapter 9     Medications Chapter 10   Nerves, Muscles, and Bones Chapter 11   Autonomic Dysreflexia Chapter 12   Pressure Sores Chapter 13   Psychosocial Adjustment Chapter 14   Sexual Health & Rehabilitation

Chapter 15   Community Resources Chapter 16   Vocational Rehabilitation Chapter 17   Recreation Chapter 18   Driver’s Training Chapter 19   Attendant Management Chapter 20   Home Modifications Chapter 21   Approaching Discharge Chapter 22   Pain after Spinal Cord Injury Chapter 23   Substance Abuse and SCI Chapter 24   Exercise Chapter 25   Alternative Medicine Chapter 26   Equipment Chapter 27   Staying Healthy Glossary