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The Experience of Disability: Change of Identity


The following excerpt is taken from Chapter 5 of Life on Wheels: For the Active Wheelchair User, by Gary Karp, copyright 1999, published by O'Reilly & Associates, Inc. To order, or get more information about Gary's book, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Major life changes often require 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:

When you become a member of the group that you have previously felt fear or pity for, you can't help but turn those feelings on yourself.

A traumatic injury or diagnosis of disease that suddenly makes you a member of the disabled community is a shock to your sense of self. Whatever image you had of disability will be the image you first apply to yourself. Before you were disabled, what were your reactions to people you saw or heard about who had a disability? How did you react when you saw a person in 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, 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, U.S. culture still tends to promote negative beliefs about the experience of disability.

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

The very vocabulary we use to describe ourselves is borrowed from that society. We are de-formed, dis-eased, dis-abled, dis-ordered, ab-normal, and, most telling of all, called an in-valid. 1

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 will 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 which are deep and sometimes troubling. But life after the adjustment can eventually be meaningful and rich--if you let it.

Notes Carol Gill:

We all differ in the degree of "equipment" we have to even look at such things as our values. But the people who can do that end up with different values. They redefine important aspects of living. They redefine roles, for example. Mothers and fathers redefine what being mothers and fathers means. What being lovers means. What being productive and contributing members of society means. This is how they adapt.

If you think your self-esteem relies on whether or not you can walk, you limit yourself. Your self-esteem 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.

You are still yourself

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 impacts your adjustment to disability.

Notes a man who has been on wheels for years:

The most common question I've been asked by people who know someone who was recently disabled is, "What can I do to help?" My answer has always been, "First, understand that they are the same person they were before their disability. Don't treat them any differently, don't expect them to be any stronger or weaker than before, but don't be surprised if they discover new qualities in themselves that never came to the surface before."

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.

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:

My name is not cerebral palsy. There's a lot more to me than my disability and the problems surrounding it. That's what I call the disability trap. This country has a telethon mentality toward disability that thinks disabled people are not supposed to talk about anything but their disabilities.

I had a girlfriend back in the '60s. One day we discussed the idea that the whole human race is disabled because we can't live in peace with each other. This was always so and it will continue that way in the future. So who is "normal"?

Sexual identity

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:

While I agree that sex involves many skills, it seems to me limited and foolish to focus on one organ, one ability, one sensation, to the neglect and exclusion of all others. The loss of bodily sensation and function associated with many disorders, and its replacement with a physical as well as psychological numbness, has made sexuality a natural place to begin the process of reclaiming some of one's selfhood. 2

Lawsuits

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 win.

Deborah Kaplan is an attorney at 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:

The legal system and the personal injury system--and I think the lawyers aid and abet it--are premised on the same notion: that disability equals inability to work. One of my concerns is the impact on somebody who has just gone through a huge shift in their life, a huge shift in their self respect and self image. They sit through a trial where all they hear, over and over and over, even from their own advocates, is how worthless their lives are. I think it's difficult for someone who's had all that negativity instilled in them to then go out with self respect, get an education, get a job, and be productive.

Passing

In U.S. 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.

What's the problem with passing? After all, the disability movement is working hard for inclusion in the 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 able-bodied 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 a 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 acting against your self-interest 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. Disabled psychologist Carol Gill describes passing in this way:

I think passing is trying to convince society that we're more like nondisabled people. We just happen to have this disability. I think a lot of people want to be assimilated into the mainstream and try to act the part of what they think people in the mainstream are like. "Passing" to me implies some dishonesty.

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--playing a role 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:

When I was growing up, adults made it very clear that bringing up my deafness would signify that I was slacking--if I "tried hard enough" I could get by. The message was clear: Shut up about it, and look like you're doing okay. I think that as long as "overcoming" disability is such a cherished cultural myth, social pressure to engage in passing behavior will be part of the disability experience. When people manage to pass, they're seen as successfully overcoming their disabilities by most nondisabled and some disabled people.

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:

An uncomfortable assessment of my last twenty years was that they represented a continuing effort to reclaim what I had lost. 3

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

I have felt some satisfaction in having my disability disappear in the eyes of colleagues and friends, but does that mean I was necessarily passing? Or was my desire to minimize the social impact of my disability a motivating force that helped me accomplish what I have with my life?

The boundary between making the most of your abilities and trying to pass as not disabled is a fine line. Some of the more radical disabled might accuse you of passing, but only you can know what drives you. A man with SCI recalls:

A man I used to work for, impressed with my level of activity and work, once said to me, "You're not really disabled!" He thought he was complimenting me. He didn't realize he was exposing his belief that it was a bad thing to be disabled. It is something to "overcome."

I remember mixed feelings. On one hand I took some pride in having participated fully in my career and being accepted as an equal--in having "passed," though I wouldn't have used that word. On the other hand, his comment was upsetting because it denied an essential part of who I am--a person with a disability. I wish he could have said, "Through knowing you I now understand that a physical disability is not necessarily the limiting, tragic experience I had believed it to be."

I want to explore my own limits on my own terms. My inner discomforts with my disability identity will probably always be around. My task is to observe and learn.

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

For those of us who grew up with disability, that is a very common crossroads we face--the moment where we discover we were trying to pass and it just is not worth the effort. "Wait a minute! This is costing us too much!" It's much more fun to be a disabled person if we just relax into it. Then we'll save ourselves a lot of energy.

The dividing lines take time to sort out. Figuring out the subtleties might not be a priority for you now. 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.

The newly disabled

Most able-bodied people imagine disability to be a far more negative and difficult experience than it is. At first, you have no conception of how someone functions with a wheelchair, so it appears to be a life of complete dependency and endless difficulty.

When you've suddenly become disabled by injury or diagnosis of a degenerative 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 shakes many of 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:

You have every right to those feelings that threaten to drown you, but you will learn that they will not drown you, and that things will get easier, and that there are things that make life worth living. But you don't want to hear that now, so just keep howling at the moon, and most important of all, keep breathing.

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, Ph.D., of the Northwestern University Medical School in Chicago, this uncertainty of the future can be so extensive that you "feel virtually without a lifestyle."4

There is a wide range of disability and experience. You might be a low level spinal cord injured paraplegic highly capable of independence. Or you might have suffered a traumatic brain injury or broken neck which 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 are the tasks of separating their misconceptions from reality, discovering over time what adjustments can be made, and learning that even the most severe 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. Carol Gill is a disability psychologist who contracted polio at the age of five. She has worked directly with people as a therapist and performed research. She knows from her own experience how large a challenge a disability is. However, Gill notes:

When you go through any crisis, any experience that tests you, in which you feel you may fail, but you triumph instead and come out on the other side, I think that deepens you. I think it gives you a lot of perspective on life.

Gill carries an image in her mind of:

...a piece of pottery going through a kiln. The temperature is very hot. If it's too hot the piece can melt down and break, but if it's just right the piece comes out stronger with lots of color, a beautiful piece of art. I think that's what happens with most people with a disability.

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:

I remember toward the end of my rehab, thinking, well I broke my neck and I got through it, I can do anything.

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:

The overwhelming majority of people can and will adjust, given proper social support, meaning not just family and friends, but society at large. I worked in rehab for many years, and it's just amazing how people can take this in stride, given adequate social support. People I never would have predicted would have the inner resources to deal with a disability, just do!

Notes:

  1. Irving Kenneth Zola, Missing Pieces: A Chronicle of Living with a Disability (Philadelphia: Temple University Press, 1982), 206.

  2. Zola, Missing Pieces, 219.

  3. Zola, Missing Pieces, 214.

  4. Jeri Morris, Ph.D., "Spinal Injury and Psychotherapy," in Spinal Cord Injury: Medical Management and Rehabilitation, 225.

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