Life on Wheels (46 page)

Many times you will turn down offers of help because you can easily do the task yourself. The person trying to help actually gets in your way! You will have gained many skills from your experience of using wheels, but most people you encounter in public will not know how you adapt. They can only react according to what they imagine it would be like if they were in your position. Opening a door from a wheelchair looks very difficult to them. They don’t know how easily you might be able to do it, so they assume it is hard, and they try to help.

No one needs help until they truly need it. Plain and simple.

A helper who helps without asking—regardless of how well intentioned— or who doesn’t take no for an answer is invading your independence and actually robbing you of control. Experienced wheelchair users know very well what they need and how it should be done. When someone imposes his will on you, it implies that you cannot decide for yourself. This is frustrating and insulting. For a wheelchair user, the experience can be an almost daily event. You will develop techniques for dealing with such encounters:

At those moments when it is necessary to essentially “fight” for control, it becomes necessary to explain.

Being helped does not mean surrendering control, unless you let it. Whenever someone is helping you—whether grabbing an item from a shelf or performing an intimate, clinical task—the assistance should be done on your terms. Their actions are an extension of your own intent—the means of acting on your choices. That does not mean ordering them around. It means letting them know how they can best help you. It means knowing your own needs and being informed, especially about clinical tasks. It means you remain aware of what is happening and teach them how to help you properly, safely, and with dignity for you both. And it means respecting the good intentions of others while you educate them.

Perhaps the most common offer of help to a manual wheelchair user is a push. To an ablebodied person, pushing a wheelchair looks like a lot of work. For them, it may be, but a person who is a manual chair user has gained enough strength and skill so that wheeling a chair is almost as natural as walking. If not, they should be using a power chair. Plus they have the benefit of ultralight, modern chairs, which are much easier to push and coast well. The offer to push is very charged:

Being pushed also changes the nature of the interaction between two people. Now, rather than walking abreast where you can see each other and enjoy eye contact during conversation, one person is behind the other in “helper-helped” mode.

If you are being pushed, your public appearance also is affected. Now, rather than being two friends strolling down the sidewalk, you can become self-conscious of being seen as someone getting—and therefore needing—help.

Irving Zola observed this problem of social interaction in his book
Missing Pieces
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¹
As a man who wore a brace and walked with a cane, he walked to the left of people so they wouldn’t accidentally kick his cane. This meant he could not always obey the social convention of men walking on the outer street side.

Perhaps most important, the very act of wheeling yourself helps maintain your strength and stamina to be able to continue to do it—the “use it or lose it” principle. It can be a satisfying test of limits and a reassuring reminder that you have the strength to control your own mobility. You might be willing to work a bit harder to push up a gentle slope or even a movie theater aisle. However, there are times it makes sense to let someone push for a while when it is a long distance. This is a choice you will often face. You need to remember that your longterm health is your first priority.

Apart from perceptual, social, and health issues, there are issues of comfort and security. Handling a wheelchair involves more subtlety and skill than an inexperienced helper realizes. A skilled rider is constantly modulating the ride for all of the little bumps and changes along the way and is very aware of their toes—the front-most part of their body in space. A helper pushing the chair is not sensitive to this, so the ride is not as comfortable or secure. A bump in the pavement—and there are lots of them on any paved surface—can be very dangerous if someone is not paying close attention. A wheeler will simply give a little extra push to lift the front casters over a slight rise in surface. A helper who is pushing might wheel right into it, bringing matters to a sudden and surprising halt—possibly even throwing the “beneficiary” of the help out of the chair!

The people who spend the most time with you will develop a sense of when it is appropriate to help, if you take the time to discuss it and give accurate feedback when they offer help. If you accept when you don’t need help, or resist help when it would be valued, they can never learn the appropriate boundary.

You have three choices in how you react to people during the offer to help: passivity, aggression, and assertion. Your response determines the quality of the interaction.

When you are passive, you surrender your own point of view and priorities in favor of another person. Passively accepting what you don’t want means that their feelings matter more than yours do. You violate your own rights, often because you are so concerned with that person’s acceptance, that you err on the side of caution rather than risk upsetting them. Ironically, passivity is a form of disrespect for other people; it implies that they are unable to handle your disagreement or assertion. By being passive, you will not get what you need, and you will deny other people the opportunity to know you for your own views and feelings.

Aggression does not serve your purpose well either. It may feel like a way of standing up for your rights, but it denies others their rights in the process. Aggression is a way of overwhelming others, not of fostering cooperation and understanding. Aggressive behavior often means humiliating, degrading, or just plain overpowering other people. It will not make them want to be in contact with you, much less care about your views and needs.

The middle ground, being assertive, involves expressing your ideas and feelings honestly as well as being attuned to other people’s feelings. Being assertive is a matter of mutual respect. It avoids both the body language of passivity—moving away from the person, nervous gestures, covering the face, a quiet voice—and the body language of aggression—finger pointing, a raised voice, and an intense stare. You speak plainly, making eye contact without challenge, and listen as much as you speak. Acting assertively is how you can develop comfortable relationships with people. You express and protect your personal rights, but at no one else’s expense.

A wheelchair user is necessarily conspicuous in public. People with disabilities are aware of being looked at and set apart as wheelchair users and are often self-conscious about their bodies. For this woman with Charcot-Marie Tooth (CMT) muscular dystrophy:

You face all of the attitudes people have about disability whenever you go out in public. People hold doors for you, offer to carry your groceries, grab their children from your path, try to relate to you with stories of other people with disabilities they know, or speak to your companions on your behalf rather than directly to you. In daily life, these kinds of behaviors will inevitably occur, and, as a chair user, you need to develop your own style of dealing with them. As noted in the summary of the 1998 National Organization on Disability/Harris Survey of Americans with Disabilities:

There is work to do to get beyond the emotions these public contacts can bring up. You may not want others to see you as disabled—at least not in the negative image so many people associate with disability. You may want them to know you are really one of them and perhaps to know that you were once able bodied, too. You may be angered by the sometimes patronizing attitudes you encounter and by being suddenly treated as needy, unable, and tragic.

There are many new feelings to confront in your early forays in public. What may seem overwhelming at first—potentially to the point of making you not want to go out—becomes familiar. You will learn how to let people have their beliefs and find you don’t need to care how they see you. You can demonstrate through your attitude that they don’t need to pity you—or make a hero of you. You will learn to check up on accessibility and become familiar with what entrances to use at common locations like movie theaters or shops. These coping tools will help you level your emotions so that your attention can return to the primary tasks of your life—work, play, family, community, love, and spirit.

Teen and early adult years can be very difficult for people with a disability acquired as a child. As children, they may have been very well supported by their families in how to face the attitudes that the wider culture feels about disability. Psychologist Carol Gill notes:

The unfortunate truth is that there are many deeply embedded attitudes in the culture about people with disabilities. People might be uncomfortable in an initial encounter with you unless they already have direct experience with a person with a disability. They’ll be wondering if there’s some special way to treat you, or if they’ll be expected to help in some way, or if they might unintentionally say “the wrong thing.” They might have an association with someone else, perhaps a parent or grandparent, who used a wheelchair at a time when they were very ill. They might be projecting themselves into your experience, imagining it as a horrible way to live. These attitudes can be obstacles in making a satisfying connection with that person. Once people come to know you well, and witness the kind of life that is possible, they find out that your personality shines through even the most significant disability.