Life on Wheels (35 page)

Whatever your disability, whether stable or progressive, you have a tremendous amount of control over the quality of your health and life. There is an optimal level of health that is possible for you—and a much lower level if you neglect yourself and elect not to practice at least some of the concepts discussed in this chapter.

You may well struggle with depression, disappointment, frustration with cultural attitudes, financial limitations, or many other difficulties that people face in the disability experience. But none of that needs to stop you from eating well, doing simple exercises, getting into the sun from time to time, and following basic medical principles to protect yourself from skin breakdown, infections, and other risks inherent in being a wheelchair user. There is always something new to try, and there are many people out there who are true healers who work in many different therapeutic modes with their skills—and hearts—to offer, not to mention a vast offering of information on the Internet.

On the other hand, if you are really out there, working, traveling, playing, raising a family, engaged in a fully active life, then you must be conscious of your limits—as everyone must be, disability or no. Your lifestyle is simply more strenuous, so you must take more care with your health.

Trying to make too many changes at once is a recipe for failure. Take one change at a time. Wait until the change becomes integrated into your daily life before adding another. Maybe you start with a little stretching, add a new food to your diet—like eating a couple of prunes every day—or cut back on the ice cream. The benefits in improved health and energy will be so precious that you will come to enjoy and value health-management habits that might have seemed unappealing at first glance.

Taking care of yourself is a lifelong process. Good health habits are crucial for your life on wheels.

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Each of us experiences disability in our own way. No one can tell you how disability is supposed to feel or how you are going to respond to yours. There are, however, some common patterns in the emotions and beliefs experienced by people with disabilities.

Acquiring a disability often challenges your very notion of who you are and, so, requires adjusting your sense of identity. According to disability psychologist Carol Gill, a polio survivor, reconciling your identity as a disabled person with previously held notions about what being disabled means is a common hurdle:

A traumatic injury or diagnosis of disease that suddenly makes you a member of “the disabled” community is often a shock to your sense of self. Whatever image you had of disability will be the image you first apply to yourself. Before the onset of your disability, what were your reactions to people you saw or heard about who had a disability? How did you react when you saw a person using a wheelchair? Did you feel pity? Did the notion of it happening to you fill you with dread? What was your image of what their lives must be like? Could you imagine them with careers and families, being creative or athletic, having sex? Or was the only image you could conjure one of sadness, dependency, pain, and loss?

Even if you know someone who has lived an active life with a disability, you might doubt you could do it. Despite the increasing public visibility of active chair riders, US culture still tends to promote negative beliefs about the experience of disability—including the idea that only rare, special people live well with disability.

In his book
Missing Pieces
, the late sociologist and disability researcher Irving Zola—himself a polio survivor—wrote:

For most people, the onset of disability heralds an intensive self-evaluation, the beginning of a process that never actually reaches conclusion. You are now a member of a minority foreign to most nondisabled people you will meet. You will remember your previous identity and always retain a sense of it. In the case of a traumatic disability, a part of you—for some initial period of time—will understandably resist accepting membership in the society of chair riders.

Most chair users eventually accept the internal contradiction between their disabled and nondisabled identities. But this adaptation takes time. The early years are marked by a series of adjustments that are deep and sometimes troubling. But your life after these significant initial adjustments can be meaningful and rich—if you let it. Notes Carol Gill:

If you think your selfesteem relies on whether or not you can walk, you limit yourself. Your selfesteem is more truly related to your compassion, generosity, and doing your best in any situation. You don’t have to be able to walk to take pride in yourself or to be recognized and appreciated by the people you care about and who care about you.

In the ways that really matter, disability does not change you. Rather, disability threatens concepts you have held about who you are. You bring to your disability whatever mix of attitudes, beliefs, fears, talents, charisma, or social skills you have—or have the capacity to develop. Who you are in the essential ways that really matter will inform your adjustment to disability. Notes a man who has been on wheels for years:

A disability forces the issue of “finding yourself.” Some people take pride in what they learn about themselves through their disability experience and appreciate the way in which it helps define their values—and their sense of their true identity.

Many psychological adjustments have little to do with your disability and more to do with issues common to all of us. For example, you might be frustrated by the difficulty of finding a mate and think that your disability is the central cause of your loneliness. But this issue is part of many people’s lives—disabled or not. Don’t make your disability a scapegoat for issues that may well have come up in your life anyway. A disability in and of itself does not preclude finding a mate, as many people have proven.

For most people, disabilities do not define them but are something to deal with when necessary.

You might believe that you are not entitled to a sexual identity, that no one could possibly see you as a sexual being, or that you don’t have sexual “performance” options. These conclusions are not true. Exploring your sexual identity can be a valuable part of your adjustment, whether you acquired your disability later in life or are making adjustments in teen or adult years with a disability since birth or childhood.

Irving Zola wrote:

Chapter 5, Intimacy, Sex, and Babies, discusses sexuality in detail.

If you were injured in a way that has led to a personal injury lawsuit, you face another complication in adjusting to your self-image with a disability. Typically, attorneys will urge you not to work during the case because working reduces the apparent impact of your disability on your life and, so, reduces the amount of money you are likely to be awarded.

Deborah Kaplan is an attorney and consultant, the former director of the World Institute on Disability in Oakland, California, and a wheelchair rider. She is concerned about the message people get during the extended process of the lawsuit:

In US culture—so imbued with fear of disability—it’s probably fair to say that anyone with a recent disability will, to some degree, resist fully adopting the identity of disability. One of the most common ways to deny disability identity is to try as hard as possible to function in the culture as if your disability did not exist. This is known in the disability community as “passing.”