Life on Wheels (36 page)

What’s the problem with passing? After all, the disability movement is working hard for full inclusion in society and for removing barriers to the ability to function as independently and fully as possible. However, passing is not about interacting in the world, being involved with ablebodied people, having a non-disability–related career, or dancing at your cousin’s wedding. If you can be an auto mechanic or a dance instructor because you found a way to adapt to the task and you have some real expertise to offer, what could be wrong with that?

Passing is crossing some line where the acting as if you are not disabled causes a problem. For example, perhaps you resist using an adaptive device necessary for your safety. Perhaps you are quadriplegic with use of your arms, but you exhaust yourself using a manual chair because you resist the image of being a person using a power wheelchair. There is a borderline between challenging yourself within reasonable boundaries and risking your health and safety because you don’t want to define yourself as a person with a disability.

Passing is effectively denying the truth of who you are and the real possibilities in your life. Psychologist Carol Gill describes passing in this way:

Trying to pass as something you’re not is always bad, unless you can carry it off so well and you have an emotional makeup that doesn’t require honesty and authenticity. It’s true! Some people can be happy playing a role all their lives. They’d be playing one role or another even if they weren’t disabled—rather than looking inside and being at peace with who they really are.

The cultural pressure to pass is great, as this deaf woman observes:

If you can be free from having to prove yourself, your choices will not be tainted by this skewed motivation. If you are able to look at yourself honestly and with acceptance, you can see this motivation and not allow it to affect your choice.

Passing doesn’t have to be only about how you are viewed by the broader culture. It can be an attempt to make up for your losses: being athletic, seductive, capable of robust physical work, and so on. People with disabilities are driven to substitute. Irving Zola wrote:

Thinking about where your motivations are coming from and what you’re trying to prove can be complicated.

The boundary between making the most of your abilities and trying to pass as not disabled is a fine line. Only you can know what drives you as you integrate your disability into your life in a balanced way. A man with a spinal cord injury recalls:

A woman who got polio at the age of five observes:

The dividing lines take time to sort out. Figuring out the subtleties might not be a priority for you following a recently acquired disability. Many of them will become clear to you in their own time anyway. Whatever choices you make are basically driven by a desire for comfort and security. If you’re at peace with yourself, no one can fairly accuse you of trying to pass.

Most ablebodied people imagine disability to be a far more negative and difficult experience than it is—or needs to be. At first, you have no conception of how someone functions using a wheelchair full-time, so it appears to be a life of complete dependency and endless difficulty.

When you’ve suddenly acquired a disability by injury or a disease, you bring your previous notions of disability to it. It is no surprise that many people find themselves experiencing depression, anger, anxiety, fear, and a very deep sense of loss in the early stages of the disability experience. Regardless of how well-adjusted, mature, or emotionally strong you are, this is a catastrophic event that can shake your basic beliefs about life. It also asks you to draw upon coping skills you might never have needed before.

Strong emotions are a natural response to this shock. A woman who has made her own adjustment to disability counsels someone raw from the experience struggling with dark, angry feelings:

You will have many questions floating around in your mind about your life with a disability. Will I be able to work? How will my friends and family feel about me? Can I be loved? Can I make love? How will I get around? Can I travel? Where will I live? Why did this happen?

Your future can seem so uncertain, with no way to grasp an image of where your life can go from here. According to Jeri Morris, PhD, of Northwestern University Medical School in Chicago, this uncertainty of the future can be so extensive that you “feel virtually without a lifestyle.”
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There is a wide range of disability and experience. You might have low-level spinal cord paraplegia and be highly capable of independence. Or, at the other extreme, you might have sustained a traumatic brain injury or broken neck that has paralyzed you almost completely. Each situation entails its own set of adjustments, some admittedly more challenging than others. Yet, what all such people have in common is the challenge of separating their misconceptions from reality, discovering over time what adjustments can be made, and learning that even the most significant disability need not preclude a meaningful life.

Being a person who uses a wheelchair is not an easy experience. But it can be an opportunity. Psychologist Carol Gill contracted polio at the age of five. She has worked directly with people as a counselor and has performed research. She knows from her own experience how large a challenge a disability is. However, Gill notes:

Gill carries an image in her mind of

Just the fact of getting through the rehabilitation process is the first proof for people of what might be possible, as this quadriplegic woman says:

While your experience might be marked by negative emotions, fatigue, confusion, or a sense of powerlessness, you also have the chance to experience hope and confidence as you witness your ability to deal with such a challenging situation. The fact is that most people who acquire a disability make the adjustment in ways they never dreamed possible. Plenty of people before you had similar feelings and could not imagine how they would adjust.

Notes Carol Gill:

Regardless of how well-adjusted, mature, or emotionally strong you are, powerful emotions are a natural reaction to a crisis and part of the recovery and adaptive process. Emotions are neither positive nor negative (although you sometimes experience them that way—most people would rather feel happy than angry). They are a natural part of your being human.

It’s important to recognize that the emotions related to your disability experience will rise and fall, come and go. Keep in mind—especially when you are feeling emotionally overwhelmed—that these reactions are not lasting. Most of all, when you are troubled, remember it is because of what happened to you, not because there is anything wrong with your mind.

Following are common emotional responses experienced by those with a disability. Whether you experience some or all of them, and to what degree, depends on a number of factors, including your individual situation and temperament.

Whether or not you think of having a disability as a tragedy depends on how you believe it will affect your life. Society ascribes images of dependency, pain, isolation, and fear to disability. These qualities are not true of the experience for many people with a disability or may not be present to the degree you might imagine. Your sense of tragedy may be amplified by these assumptions. Such exaggerated beliefs about disability are a source of unnecessary suffering.

Says this man with paraplegia, 33 years following his spinal cord injury:

That is not to say that you should be expected to just “get over it.” Carol Gill says:

In
Sexual Adjustment
, Martha Gregory writes:

If you consistently project only the negative aspects of the experience of your disability to your family, friends, and the public, they are more likely to reflect negativity back to you. The way you feel about yourself and your disability affects others’ reactions to you. You might also feel negative messages about your disability from others. It goes both ways. Self-confidence is no guarantee that some others won’t see you in tragic terms, but revealing your positive side will often overcome the initial discomfort some people might have with your disability.

Your sense of tragedy about the experience of disability is important to face. Are you willing to consider that it’s not as horrible as you always imagined? Michael Yapko, PhD, in his book
Breaking the Patterns of Depression
writes:

Once you can discover that the impact on your life options is less than you feared, the sense of tragedy is reduced. Tragedy is really the beginning of the process. As a man who has spent years on wheels observes:

New people you meet who find out what led to your using a wheelchair will experience your story as tragic and respond with sympathy. This is natural on first contact. They need to feel the tragedy of it themselves and make their own adjustment, especially if they are people with whom you will have a continuing relationship. Just as you adapted beyond the initial sense of tragedy, so, too, will the significant people in your life.