“All societies will always stigmatize some conditions and some behaviors because doing so provides for group solidarity by delineating “outsiders” from “insiders”. – Sociologist Gerhard Falk. (Wikipedia)

Gecko on D.'s hand.
Gecko on D.’s hand.

My son has schizophrenia, so we will most probably have experience in dealing with stigma, you might think. Well, no, not really. When I take a few minutes to think back and relive the stretch of time that began with the day we received the diagnosis, and started telling the whole world about it, I find myself realizing that stigma has never really played a role in our lives.

Even if most of us know what stigma is, let me just share this very good definition that I learned in the Coursera course ‘The Social Context of Mental Health and Illness’:

Stigma is a combination of:

  1. Ignorance – Lack of knowledge,
  2. Prejudice – A problem of attitude, and
  3. Discrimination – A problem of behavior.

 Let’s have a look at these points.

Ignorance and Prejudice – I don’t think someone can be blamed for being uninformed about an illness he/she never had anything to do with. Before my son D. (who is highly intelligent and has a kind nature) was diagnosed with schizophrenia, I had a completely wrong picture of the illness. I thought that those suffering from it were unpredictable, strange weirdos with a split personality, an IQ far below average, and a tendency to violence. I had prejudice. I prejudged people with schizophrenia and had a negative attitude toward them, due to my lack of knowledge about the illness.

I think most of us have some prejudice.

For instance, what is your spontaneous reaction when you think of people who complete their studies with distinction and others who complete without distinction? Mine is, wow, those receiving ‘with distinction’ must be very gifted, more so than those who do not qualify for the distinction. Only when I ponder and become aware of the many possible reasons for a student not graduating with distinction, I realize that intelligence might not be one of them. Rather, personal circumstances, illness, language difficulties, having to take care of younger siblings or sick parents, etc. etc. may have rendered studying and concentrating especially difficult for that student.

 Discrimination – Having prejudice does not automatically mean acting in a discriminating manner.

The way someone behaves toward the object of his prejudice or misconception I think is greatly the result of the norms and values that prevailed in the environment this person grew up in, and how he or she was brought up to handle situations and treat people who deviate from these norms.

Back to the example of my own prejudice in regard to schizophrenia: In the beginning of D.’s stay in a mental hospital he was in a closed (I hate using the word ‘secure’ in this context) ward. I must admit that I was quite (negatively) overwhelmed when I first saw the other patients there. Mostly young people, some behaving strangely, completely aloof and seemingly not connected to their surroundings, some murmuring and mumbling to themselves, making faces or just staring into the void, others obviously depressed and extremely sad, and some even aggressive and loud. Visiting my oh so ‘normal’ son in this crazy surrounding nearly every day, I came to know the patients on a more personal level. My honest curiosity and interest, combined with a kind word here and a smile there, moved them to open up to me. Believe me, some of the life stories I got to hear were anything but amusing. An entire new world of mental and emotional settings revealed itself to me, both extremely sad and also very fascinating. Gradually, schizophrenia, bipolar disorder, multiple personality disorder, eating disorders, post trauma etc.  became a part of my thoughts and my life.

My son D. asked me to get him the best books about psychiatry and mental illnesses and disorders. He became absorbed with the subject and eventually helped the medical staff diagnose him. D. speaks openly about his illness. To a certain extent, he is even proud of being special. And we joke around. I sometimes call him my smart psycho son. In return he gives me a cheeky grin and says ‘Well, I obviously inherited my craziness from you.’

 Beyond the forces that govern us such as instincts, likes and dislikes, illnesses and other elements within ourselves and in our environment that we cannot influence too much, most of us do have a certain amount of freedom to choose. We have the freedom to think, to learn and to make changes; the freedom to decide to react in one way and not the other; the freedom to explain and help others understand, and the freedom to talk and let it all out. I am convinced that the extent of how much stigma influences our life depends considerably on how we perceive ourselves and our disabilities. By showing the environment that you accept yourself the way you are and have no problem talking about your strengths, weaknesses and disabilities, you minimize your vulnerability to criticism or ridicule. I mean, hey, if you openly say you have schizophrenia, the idiot who will still find it attractive to call you a psycho will look like the loony himself.

AND, the more we all openly talk about our disorders and get people to become aware of them, the more we contribute to reducing stigma. It is a snowball effect.

 I am a volunteer with the Israeli Association for Mental Health. Together with several other relatives of people with mental health issues we are a group that helps organize and come up with ideas for the various events & activities the association offers.

We are now independently starting a new project to fight stigma in the media here in Israel. If you have experience or ideas I’ll be happy to hear and get inspired, no matter where in the world you are located.

Thanks!  Heila

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