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Understanding and Coping with Stigma of Disabilities - part 1

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By Robert J Mittan, PhD
Epilepsy Society

Having a disability or chronic health condition saddles the person with more than just the physical complaint. One has to struggle with the social meaning of that disorder as well. Often society is not very accepting of illness and disability and the person affected becomes stigmatized as a result. Stigma is a common problem among the disabled community. It not only affects the person with the disability, but may extend to include his or her whole family as well. The person is shunned. Social opportunities are denied. Self-esteem suffers. I’m sure you know the drill.

Stigma is an interesting animal. For millennia stigma served a vital role in preserving the welfare of human society. There were two main types of stigma applied to persons. One was the stigma applied to the person who could not be trusted or who somehow posed a threat to society’s values. This was the stigma reserved for robbers, murderers, the lower classes, and slaves. Persons considered treacherous or capable of harming others if given the opportunity. Of course, the stigma was not always fair, especially in the case of lower classes and slaves, who could be honorable and compassionate people. But overall, the discrimination kept the social classes safe from the possibility of threat.

The second vital role stigma played across the millennia was to keep society safe from illness. It is only in very recent times that mankind has understood the cause of illness and disability. Pasteur showed the role of germs in the spread of sickness only 150 years ago. For thousands of years before Pasteur mankind understood that it was possible to become ill from close contact with someone who was ill. For thousands of years the sick and disabled were reasonably (for those times) seen as a threat to one’s own health, whether through contact, through magic, through possession, or though evil. Mankind’s ignorance said the best way to keep your health was to avoid all of those who were ill or disabled. Thus all who were sick and disabled were stigmatized and outright avoided by the rest of (healthy) society. The stigma connected to illness performed the highly essential role of preserving the health of others. For thousands of years both kinds of stigma were important human adaptations.

But now we get to modern times (at least what we consider to be modern). Overnight, our understanding about illness and disability and the threat it poses to each of us have changed. Certainly, persons with contagious diseases are still avoided and even isolated in special places we call “hospitals.” However, only a small fraction of those who are ill pose genuine harm to those that are healthy. People with disabilities such as cerebral palsy, autism, or epilepsy pose no threat of illness to those around them. However, society and culture are very slow to change. Vague feelings of apprehension that another’s illness poses a danger to oneself and one’s family still linger beneath our “logical thought” of only the past 150 years. Old feelings have not caught up with logic. There are still vague fears of harm from illness and disability present in even these “modern” times. People remain vaguely uncomfortable around a wheelchair, people are avoidant of behavior that seems unpredictable, and people can be frightened of the sudden loss of control from a seizure. These are thousands of years of feelings expressing themselves in modern day life.

Our logical selves know better. Society in general is beginning to understand the difference between contagion and a non-infectious health condition. Even with contagion we understand humane methods of protection that involve the care of the affected person rather than his or her rejection. But this is a work in progress and we as a society still have not had our ancient and once useful feelings and fears catch up to modern logic and present day state-of-the-art medical understanding. The result is that stigma still exists and is practiced among us. Stigma remains a real challenge in the social life of persons with physical and behavioral disorders. Stigma adds a social burden on top of the physical burden of a health disorder.

The task for this article is how to deal with stigma - specifically the stigma attached to physical disorders.
To begin with, there are two main types of physical conditions that are stigmatized. The first is where the physical or behavioral disorder is obvious to everyone and the second is where the disorder is hidden and not obvious to the casual observer. People with each type of condition, obvious or hidden, tend to have typical ways of dealing with the stigma.

The person with an obvious physical or behavioral disorder is confronted with the possibility of being stigmatized with every new social contact he or she makes. The typical solution is to manage those social contacts. Most commonly, this is done in two ways. The person creates a “comfort zone” of people who know and understand about the disorder and she spends most of her time with those people. This is the “comfort zone” coping technique. The second method is to avoid social situations where the embarrassment of stigma might occur. This means avoiding people or situations where new social contacts might react with stigma and withdrawal - even if the reaction is mostly an “uncomfortable awkwardness” in the situation. This is the “avoidant” coping technique. Less common, but used by many is the “support others” coping technique. Here the person does not avoid social situations and new contacts. Instead he understands that other people might not know how to “react” to his physical disability and this lack of knowledge or experience with the condition may make others feel uncomfortable. The strategy here is to make the other person feel comfortable so the interaction can progress beyond the issue of the disorder.

Many people with disabilities (and their families) think that others “owe” them understanding and acceptance. After all, they are the ones with the burden of the disorder. The problem is, the other person may simply have no idea how to provide appropriate understanding and acceptance. If the other person has never had any experience talking to someone in a wheelchair or dealing with someone who doesn’t make eye contact or respond with relevant sentences, that person is going to have no idea what to do. The whole situation will make her feel uncomfortable and ineffective. The easiest way to deal with that situation is to make a graceful exit, to withdraw from the situation as soon as socially permissible. To the person with the disability, the withdrawal is likely to be experienced as rejection. For the person withdrawing, the experience is likely one of embarrassment over being unable to know how to cope with the situation. Ironically, the encounter has caused a loss of self-esteem for both parties. This is why the “support others” coping technique is so powerful. The person with the disability supports and teaches the other person how to be in the presence of the disability without feeling he is a personal failure because he has no idea how to cope with it in the social situation.

In addition to physical disorders that are obvious to everyone, there are disorders that are hidden to the casual observer. A good example of this is epilepsy. If the person is not having a seizure at the moment, the person can pass as being entirely typical. The same can be true for a person who hears voices. Others need not know-it can be concealed. Here the usual coping strategy is “concealment.” The stigmatizing condition is kept hidden from others so that it does not affect the social relationship. This can be a successful strategy, but it comes with a cost: fear of being found out and of being discovered that you have lied to others. This fear and anxiety over being found out can cause the person to use the same coping techniques of someone with an obvious stigma, that is sticking to a “comfort zone” of people and “avoidance” of social situations where one might be ”found out.” Further, “concealment” as a strategy makes the “support others” coping technique impossible. You have to tell others in order to support their coping skills. “Concealment” is arguably the most disabling of the common coping techniques for stigma. The person stays within their comfort zone, which could be as small as one’s immediate family. The person avoids social situations, so much of her life is cut off from opportunities to grow and find happiness. Finally, concealment creates constant anxiety over being “found out.” These are all conditions for a miserable life whether or not a person has a condition that could stigmatize him.

So, How to Cope?

Most people make the mistake that the place to start is with society. “If society just accepted _______, my life would be alright.” That statement is very true, but is it realistic? If a person is already familiar with your condition and has social experience with others with the same condition, that person will likely be accepting and comfortable from the outset. However, the world is populated by hundreds of different physical and behavioral disorders - and each person with one is unique. The chances you will encounter only people experienced in your situation is remote unless you hide in your comfort zone. The burden will be on you to make others comfortable with your condition - or the burden will be on your family and friends if you cannot do it for yourself. The question is how do you - or they - get started?

Reality Check

Having a stigma can feel like an overwhelming experience. The stigma colors everything. It affects your social relationships, it affects your opportunities, it affects your identity, it affects your whole life. At least that is the way it feels - and we let it! Think about it. Is the stigma all you really are? Does stigma make you male or female? Does stigma make you a son or daughter? Does stigma make you 10 years old or 40 years old? Does stigma brush your teeth in the morning? Does stigma cause you to choose a bagel over toast in the morning? Does stigma cause you to watch that particular TV program? Did stigma choose your hairstyle? The fact is as a human being you are very much more than a stigma. You have a personality. You have likes and dislikes. You have dreams and fears. You love others and you are loved by others. All of those things make up who you are. And when you think carefully about it, the stigma is, at best, only a very small part of what makes you a unique and interesting person. So instead of presenting yourself in front of others as some particular stigma, present yourself as the complex person that you are. To do that you must do the most important thing - see yourself as a complex and interesting person whose total being is far more than some stigma.

The problem most people have is when they have a stigma, they begin seeing themselves as that stigma. They become obsessed by it. Their actions and their social contacts are all defined by the stigma. The stigma gets magnified in the person’s mind until that is the only part of one’s self that she sees. What about all of the other parts? There are a ton of them! Why doesn’t the person focus on being a good chess player, or a loving family member, or her attractive eyes? If you are going to fill your mind with an image of yourself, pick something positive! I can guarantee you there is a lot there to choose from. And I recommend that you make up your self-image from many things, and not just positive things. Not one of us is perfect on this earth. We all have our failings and sometimes our failings are the key to what endears us most to those around us. Probably everyone would find a perfect person a complete bore (and how would we go about socializing with the perfect person?). Sure, you have cerebral palsy, autism, epilepsy, or something; but such things just round you out as a unique person who has many other qualities. Accept that unique mixture that is you and immediately others will be more in a position to accept the whole you, too.

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