Passing for normal
Cultural pressure
and disability
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Despite the popular thought that those of us with FM, are "acting out" a disabled role, nothing could be further from reality. In point of fact, a goodly number of us try and present as "normal," denying that we have a disability at all. We are encouraged and even demanded to do this, by our own society. This is called, "passing for normal" which is a state of denial on the part of the person and is often, self detrimental.

A word ... what is normal ?

As most persons with a disability will tell you, "normal" is a setting on a hair dryer, and the word has nothing to do with our lives or how we live them. In other words, what on earth is normal ? Why do we have to "conform" to a social or medical idea of normality? Unless, we ourselves desire such a thing, we should not be forced into such a role.

The push for normality is rife in the medical world, often with extreme attempts to "normalize" the person. These attempts can often be painful and downright risky, with major surgeries and expensive procedures, all in an attempt to "cure" the defect. When the fact is, simple accommodations would often be less painful and a lot easier to attain.

This is not to say that things that can be fixed, shouldn't be, but a little less stress on making us "normal" if you please. The medical model of disability however, often denies this and creates more of a disability than the body itself does. Mainly by what it does to our state of mind and how we think of ourselves.


Medical model of disability:

" ...disability rights groups see the medical model of disability as a civil rights issue, and criticize charitable or medical initiatives that use it in their portrayal of disabled people, because it promotes a negative, disempowered image of people with disabilities, rather than casting disability as a political, social and environmental problem. Various sociologists (Zola, Parsons) studied the socio-cultural aspects of "normalcy" and the pressure it exerts on individuals to conform. Wikipedia


Medical model and deviants:

Physical disability is often seen, according to medical definition, as deviant. It is so seen, because it "violates institutional expectations" or is different from the physical characteristics possessed by the "normals." Now if that doesn't make your hackles rise up in protest, you need to take a serious moment and read it again.

I say this for the simple fact, that if you live long enough you will at some point, due to the disabilities that come with age, become medically "deviant" by this definition. So it is a labeling problem we all must look at, not just those of us who are already persons with disabilities. This concept will effect everyone at some point in their lives.

This means, even if you are "normal" now, when the disabilities of age come up and the medical model, cannot "normalize" you, you will likely be shuffled off to a nursing home or other such facility and quite literally, forgotten about by the medical profession. This is the fate of many persons with disabilities now, who are not aged.

The medical profession will quite grand standingly, show off the person with a disability who has "overcome" it and become a "productive" member of society again, via their interventions as the model to strive for ... And everybody else, the majority, for whom this would not work, are written off and hidden away ... considered a burden on society. This means anyone, who does not go to extremes to become "normal" no matter what they have to suffer to do it. ( See Medical models a mis match, on site link )


Effects of the Medical model on how we think:

Read any medical definition of disability and you will hear words like "deficit", "tragedy", "burden" and so forth, all negative words, with heavy emotional factors built into them. What does this do to the person who has a disability who hears all of this? It encourages them to try and refute those statements of course and only "admit" to disability when forced to, often with disastrous results.

"In U.S. cultures, 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."

In short we are told that to be disabled is "bad" socially, medically and even morally and that we must conform to normality as much as possible. Never mind the fact that we often can do no such thing and in fact trying to do so, can just make matters worse for us.

For example: You refuse to use a cane to aid your balance, or use a wheel chair for long trips ... as you do not want a visible indication of disability. The result ? You injure yourself more often due to over stressed muscles and joints, fall more, as you are off balance and any long trip is a nightmare of stress and exhaustion. Or worse, you simply stop doing such trips ... at all.


My personal sojourn into this labyrinth:

I realized, some years ago, that I had unwittingly done this to myself. I had cut off anything that required long walking, like trips to the zoo, or going window shopping for the day, etc. Slowly but surely, they had just dropped out of my life. As I could no longer do them "normally" meaning on my own two feet, without paying a price of extreme pain. Not to mention, being miserable the entire time.

I would do things like take a long ride or plane trip and would fall on my face when I tried to walk, after being in a forced legs down position for hours. I did this to myself, repeatedly, rather than let the flight personnel bring a wheelchair up to the plane for me. I avoided traveling on account of it.

I finally said to heck with normal ! Got myself a wheelchair, or had them bring me one and went back out and did things again. I finally had to make a choice of use the chair, or just let such activities slide out of my life ... forever. I chose not to permit that to happen.

The looks and even comments that I get when people see me stand up and get out of that chair later, or the ones that stare when I walk up to one and sit down, are not to be believed. They run the gambit of incredulous, to downright offended. Which was one reason, among many, that I fought the idea for so long. 

Now, I am not obliged to explain to them why I need one, so they can think whatever they want. But, I will admit that it took quite a while to get over that, to where I no longer care what they think. I had to re-assess my own self image. As this was visible proof to anyone's eyes of my disability.

The second hurdle was getting over my emotional reaction to the often sheer unadulterated rudeness of the so called "normals." In point of fact, I found myself quite hostile to them, mainly due to their treatment of me. It took some more self re-assessment to get over feeling that and stop wasting my energy.


"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." Life on Wheels

The problem lies in that you can go beyond reasonable self challenges, to the point of self detriment. In short, we are not being honest with ourselves, or the world at large. Do you really want to "play a role" for the rest of your life ? Can you lie to yourself and everybody else for the rest of your life and suffer for it ? Some maybe can, but most cannot do this without doing themselves a great deal of injury, both physical and emotional. There is no peace in such a role, as you are trying to live someone else's ideal, not your own.

Furthermore, it's not going to help a bit to deny it. Whether you want to be seen as a person with a disability or not, the fact is, you have one and the sooner you accept that and understand that someone else's idea of "'normal" has nothing to do with you and get on with your life, the better off you will be. Failure to do so, can result in some extreme self detrimental behaviors.

Examples:

The person who has an extreme sleep deprivation disorder, who, during lunch, can be found in the bathroom stall, sleeping. With their pager or cell phone set to wake them, so they can go back to work. Who, if asked, would deny that she has a sleeping problem. 

The paraplegic, who has arm use, using a manual chair, vs a motorized one, exhausting themselves needlessly, as they don't want to be seen as more disabled than they are. 

The man, who is in extreme pain, who self medicates and drinks every night, rather than go to a doctor and get help. As he doesn't want to be seen as "disabled." 

The Deaf person, who tries to lip read and misunderstands 70% of what is said, rather than use sign language, which is visible. The list is endless and all have the potential of self damage.


Social model of disability:

"A fundamental aspect of the social model concerns equality. The struggle for equality is often compared to the struggles of other socially marginalized groups. Equal rights are said to give empowerment and the 'ability' to make decisions and the opportunity to live life to the fullest. A related phrase often used by disability rights campaigners, as with other social activism, is "Nothing About Us Without Us."

The social model of disability often focuses on changes required in society. These might include:

Attitudes, ... a more positive attitudes toward certain mental traits or behaviors, or not underestimating the potential quality of life 

Social support, ... help dealing with barriers, resources, aids or positive discrimination to overcome them. 

Information, ... using suitable formats (e.g. braille) or levels (e.g simplicity of language) or interpreters. 

Physical structures, for example buildings with sloped access and elevators.

The social model of disability implies that attempts to change, 'fix' or 'cure' individuals, especially when against the wishes of the patient, can be discriminatory and prejudiced. It is contended that this attitude, often stemming from a medical model and a subjective value system, can harm the self-esteem and social inclusion of those constantly subjected to it (e.g. being told they are not as good or valuable, in some overall and core sense, as others). Wikipedia

I recall, as a teacher for the Deaf, the oft repeated lament of being sick and tired of being viewed as a walking malfunctioning ear. As if their inability to hear, was all there was to them. For most, they consider being Deaf to be a cultural aspect, one of which they are very proud. They do not see themselves as the medical definition of deaf, and they wouldn't accept being "fixed" if you handed it to them on a golden plate. They are perfectly happy to be what they are, Deaf, with a capital D, thank you very much. :)


Cultural pressure:

This is the rub, the pressure from our own culture that flat demands we "pass" ourselves off as normal. One reason ? We are expected to present as normal so that they won't feel uncomfortable. Let's face some facts, your average person, unless they live with a person with disabilities, does not face it on a daily basis and is quite honestly unsure of how to act or what to do when confronted with it. They are floundering and uncomfortable and they don't like feeling that way, so they try and force us to present them with a "face" they can live with.

Moreover,  there is what most people consider an obligation factor due to them. We are often, due to disability, unable to meet our own needs and or require so called "excessive" medical help, for which society as a whole, has to pay for. Now never mind the fact that we have no choice in this. The cost and often the choice of treatment, is not our doing. Yet, we are made to feel like we are "abusing" the system and the population at large.

To those who complain, understand a simple fact, that acquired disability, shows no favorites. The same people who are complaining about supporting those on disability, can all too easily find themselves ... joining the ranks of the disabled and will learn the hard way the facts of life that we already know far too well.

Then, to top it all off we have a much cherished ideal in our society, one that says that "overcoming" disability, is somehow noble and inspiring. This is a myth, propagated by the very people who find our reality difficult to handle. In particular, the medical profession who demands "normality."

The inspirational or pity paradigm is pointless. We neither want your pity, nor do we want to put on a pedestal and seen as inspirational for "overcoming our disability." As that has nothing to do with us. Let's be blunt, and say it is more about you, the "normal" and how you feel. It is about your own fears of sickness, mortality, inadequacy that often makes you try to put us in that position. "Do not pity us and think you are being understanding. Do not feel inspired by us and think you are being complimentary. In both cases, you are seeing us as less than human, and as unequal to you." Letter to my children


Fine line we walk:

There is a fine line between making the most of your abilities and trying to pass yourselves off, as not disabled. We do not, nor should we, view ourselves as our disability. We are persons with disabilities, not disabled persons. Person first, always, but trying to pass as "normal" denies our reality.

We often tend to think that we have "something" to prove. That we have to show others, that we can be just as "good" as a normal. Where did this come in? It came in due to the medical, social and cultural pressure we are under to "conform." That the concept of normal is some kind of deity, we all must bow to. Well, news, it's not.

We tend to try and make up for our disablement, by excelling in other areas, again, what is it we are trying to prove and why are we trying to prove it ?  Because we have been told, over and over, we are "abnormal" which equals, bad and therefore, we have something we have to "overcome." Further, that we have some kind of moral or social obligation to do so.

The concept that we are somehow "deficit", and therefore have to make up for this "lack" is utterly bogus. We are what we are ... period. There is nothing we need to prove, to anyone. If we excel at something, great. It should be taken for what it is, a personal accomplishment. That we have a disability and maybe had to work harder and longer to do it should be acknowledged, but it makes it no less a personal accomplishment. Just like anyone else's. We are "differently abled" as the saying goes and all we ask of society, is to include us.