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Understanding and Coping with Stigma of Disabilities

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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.

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