BY PETE EARLEY
Well known journalist and author Pete Earley published the following blog about ACMI board members’ story.
(3-1-19) We spend much time, money and effort fighting stigma. Charles Goldstein, a parent of an adult son with a serious mental illness, a doctor and a mental health advocate recently questioned the value of such efforts. Put simply: Is it worth our time and money? Here’s a copy of a speech that he gave before the Council for the Advancement of Global Mental Health Research at Columbia University.
Mental Illness, Stigma and Leprosy
To whom it may concern (and I believe that would be everyone).
My name is Charles Goldstein, I’m a retired emergency physician who’s worked in Phoenix Arizona in a busy metropolitan ER for over 40 years. I’ve worked with the mentally ill who were brought to or dropped off at my emergency room, usually inappropriately, because that’s one of the least helpful environments people with mental illness can be in. Almost none of the time that I was dealing with people with mental illness was I treating them, but more was trying to facilitate an appropriate discharge from the ER to someplace that might help them, a Herculean effort in and of itself. In addition, I have had the good fortune to work with very dedicated people striving to help people with mental illness. For the last 4 – 6 years or so I have become quite involved with organizations that do this good work; through this experience and because my wife, Laurie, and I personally have raised a child (now man) who has serious mental illness, I have a few things to say on the subject.
Mental illness, and particularly serious mental illness, afflicts an awful lot of people.
About 20 to 25% of the total population of the US has some form of identifiable mental illness and approximately 3 to 4% of the population have a serious mental illness such as schizophrenia, bipolar disease, or clinical depression. While there are many medications and forms of therapy which can help people with mental illness, none of them actually cure the disease. There are many problems that beset people with mental illness, but I believe in general there are two problems which the people who have various forms of this disease have in common in dealing with our society. These are ignorance and stigma.
We believe we have come a long way in reducing societal ignorance when it comes to mental illness.
Even as little as 50 to 60 years ago nobody, or very few people, had any idea that this was actually a chronic illness much the same as, say, chronic obstructive lung disease, diabetes, or chronic renal disease. I believe we’ve come a long way in recognizing mental illness as a chronic, as yet incurable, disease much like the diseases I’ve mentioned above. Combating ignorance about mental illness with educational programs and the like have made good headway in raising awareness and understanding for the unfortunates with this chronic illness; but, nonetheless, to compare it with the chronic diseases listed above is not a good analogy because there is another aspect of society’s attitude towards mental illness, and that is the problem of STIGMA.
Why, indeed, is there stigma involved with the disease of mental illness, but no stigma involved with the other chronic diseases that I’ve mentioned above such as diabetes?
I believe that the reason for Stigma has to do with the symptomatology. People with diabetes, heart disease, renal disease exhibit symptoms as well as those people with mental illness, however these disease elicit only sympathy from members of society. The symptoms of mental illness on the other hand are at best alarming to members of society and at worst frightening. A more accurate analogy would be to consider the disease of leprosy.
Leprosy is a contagious disease caused by the organism mycobacterium leprae. It is still endemic in some areas of the world to this day and can causes severe dysfunction in those individuals unfortunate enough to have it. While it is more or less easily cured today by a multi antibacterial regimen, 100 years ago or so this was an incurable disease and the disgust and the revulsion that society felt towards those people who had this disease caused them to isolate them and in some cases like that of Hawaii to restrict them to live on an isolated island. The stigma attached to leprosy was based on the disgust and revulsion people felt over the disfiguring symptoms of the disease. The stigma attached to mental illness is based on the symptoms of bizarre behavior which cause alarm and fear.
No amount of education was going to change society’s outlook on lepers, and though we try mightily it is very difficult to change society’s mind over the way it feels about people with mental illness.
That is not to say that organizations who do great work trying to reduce stigma should not continue to do that work because I believe it does help to some degree. However, in the case of leprosy, the stigma attached to the disease was overcome by finding a cure for the disease. I believe that finding a cure for mental illness will be the ultimate way to deal with stigma. Because of that I applaud the efforts of everyone to raise money either from the government, private organizations, individuals, charities etc., but I believe that the brunt of the money raised from such efforts should be spent on finding a cure rather than trying to combat the stigma from the symptomatology of an as yet incurable disease; Mental Illness.
Dr. Goldstein’s remarks reminded me of a July 2013 column written by Linda Rosenburg, the president and CEO of the National Council For Behavioral Health that sparked much controversy. It was entitled: Is Mental Health Stigma Overrated? and contained this paragraph:
Is mental health stigma overrated? Is it time to rethink anti-stigma campaigns that are based on the belief that stigma stops people from accessing services?
I must admit that I’ve long questioned the use of anti-stigma campaigns — fearing they do little to help people with mental illness. They have however become an industry. How about we instead put the money into services?
I wrote about the Goldsteins last December in a blog post entitled: Parents Spent 15 Years Trying Community Treatment, But It Took Long-Term Residential Care To Help Their Son
Dr. Goldstein can be reached at firstname.lastname@example.org
Laurie Goldstein can be reached at email@example.com