There is no greater agony than bearing an untold story inside you.  Maya Angelou

Change the story and you change perception; change perception and you change the world.  Jean Houston

Lynda L. Crane and Tracy A. McDonough
Mount St. Joseph University

 

People with schizophrenia are commonly stigmatized, ignored, and discounted, and they have little or no opportunity to have their voices heard (Link, 1987).  It is only recently that clients with schizophrenia have been consulted even about the effects of their own medication or their perceptions of treatment outcomes (Schulze & Angermeyer, 2003).  That they are asked about their lives beyond their condition is even more rare, and we know of no oral histories of those affected. 

 

We initiated the Schizophrenia Oral History Project in the spring of 2011 in the hope of providing a forum for individuals with schizophrenia who would not be comfortable speaking or writing publicly about their lives.   To date, we have recorded the life stories of forty-seven narrators, and we have given more than 40 presentations of our narrators’ stories (through audio excerpts and photographs) to mental health providers, mental health advocacy groups, and undergraduate and graduate college classes. Additionally, our website offers information about The Schizophrenia Oral History project, provides individual pages for each of our narrators (featuring audio excerpts), and offers contact information for anyone with schizophrenia who might want to tell their story,  www.schizophreniaoralhistories.com 

 

Oral history offers an opportunity to promote empathy and understanding for those with schizophrenia among students (and others) that other methodologies do not, because it allows students to come into “direct” and personal contact with those with have the disorder.   For example, according to the National Alliance on Mental Illness, 60 percent of the population believes that those with schizophrenia are likely to be dangerously violent, despite statistics that show the majority of violence committed by those with schizophrenia is mediated by substance abuse and is likely to be directed toward themselves (National Alliance on Mental Illness, 2013). As students hear the words of individuals (in their own voices) who demonstrate awareness and concern for others, it is difficult for them to continue to believe that all individuals with schizophrenia are dangerous and violent. 

 

After more than 35 students heard the presentation, they filled out response forms that solicited their understanding and reactions through open-ended questions.  The following are characteristic examples of student responses that indicate their increased understanding and empathy to those who have schizophrenia and their appreciation for the oral history method.

 

Greater Understanding

     I believed that schizophrenia patients had very negative and destructive lives, but after this presentation I now know that there is a possibility for people to be positive even with schizophrenia and to have a life.

     I was under the impression people with schizophrenia were out of touch with reality, but Amber showed me that she can be aware of her surroundings, her situation, and what it means to her.

     People who struggle with this are not violent.  They are more often victims.

     I know that they are not all violent.  They are able to cope.

     They just want to be normal.  They still have dreams and goals for themselves.  They see that there are people who are worse off than they are, and they want to help people.

     [What stood out] Their ability to have compassion for others despite their own problems.

      Pretty amazing.  I’m glad to have my perceptions of schizophrenia informed by this presentation, specifically that these people are ill, not crazy or evil and that they have obstacles to overcome.  Also they want to be ‘’normal.”

     People with schizophrenia are thought to be violent, and they are not usually.

     Schizophrenia isn’t at all what I originally thought.  They are not violent, dark people.  They are caring, bright, gifted individuals who just have a hard life.

     My general reaction is being surprised.  I’ve had stereotypes of people with schizophrenia.  To hear these narrators it changes my view in a good way.

     I thought schizophrenic people were violent, but many can differentiate between the voices (such as Amber) which surprises me.

     The public stereotypes are very wrong, and the media does not help people with these illnesses at all.  Violence and schizophrenia is not common and that stereotype is wrong. People really do struggle and they are strongly affected by the stereotypes.

     It was interesting to hear these stories.  I have never heard anything like this, and how aware they are of everything everyone else says and thinks about them and how they can work past it is amazing

     I find it shocking b/c it breaks down every preconception.  Hearing the speakers in a way is sad but others it is relieving because they are typical people.

     I found it revealing that these narrators were so aware of others reactions to them.

     I was encouraged to hear how positive and independent each of the narrators seemed through the course of the interview.  I was surprised how open each narrator was in discussing their disease and symptoms.

     I was in a way surprised.  My initial thought of people with this disorder were not able to control their movements/actions and they were all the same, but these stories opened my eyes to who these people truly are.  They all have their own identities for themselves and making positive contributions.

     People who struggle with this are not always violent.  I feel that they are blamed for crimes, but often they are really victims.

 

Increased Empathy

     [What stood out most] I think is the realization that they are hurt by societal judgment + live with it daily.

     It was sad to hear how hard it is for them to do the little things.   I loved hearing the talk.

     I have a greater appreciation for the individuals who have to put up with this mental illness.  To hear the narrators speak about themselves gave me a different perspective. 

     It made me feel sad.  I felt sad because these people deal with things that I have taken for granted each day.  They have to constantly struggle with simple things.

     It’s not that I ever looked down on people with schizophrenia, but after hearing this, I have a lot more respect for them.  It’s sad that the narrators realize how the world perceives them.

     Their stories are inspiring.  It is definitely an eye opener.  It makes me think twice about judging others.

     I gained the upmost [sic] respect for the narrators and for everyone with this disease.  It’s a struggle, like anxiety, and I admire how they’ve learned to cope with it. 

     I have the most respect for these narrators.  For them to open up about their problems is rough, and their [sic] strong individuals.  I wish them the best, and I hope they get to accomplish everything they want to in life.

     The comment about how people with schizophrenia are cut off from the reality of the world stood out to me because as our presenters were talking about it I put myself in that situation and its truly unbearable to think about being cut off from the world.

     Alice:  “Just because I have this illness doesn’t mean I’m not a good person.  I’m just a human being with a problem.”  The fact that she felt that she had to say that made me hurt for her.

     When Amber says she wants to be able to do things that most people take for granted and it really bothers her, it made me realize not everyone is able to do the simple things I do every day.

     Very touching.  It is painful to hear them talk about their struggles, especially with society.  I am happy to see that some have found ways to cope.

     It’s heartbreaking but amazing how strong each of them are.  Heartbreaking, again, b/c they believe the things society says about them when they are not true at all.

     It really opens my eyes to what it’s like living with schizophrenia.  These people are fighting against schizophrenia every day every hour.

     Made me feel so much more compassion for others and their personal struggles.

     Alice:  “I’m just a human being with a problem.”  Who isn’t?  I may not have any illness like Alice but I still get/have my own problems sometimes.

 

Appreciation for Oral History

     It is better to hear from an individual with the disorder than a second-hand story.

     Hearing stories from the narrators it made me realize to treat everyone with the utmost amount of respect.  Although people may not look “normal” or be different, on the inside people all have hearts and emotions.

     I loved hearing the actual voice of the narrator.  It’s more meaningful and really connects us, the listeners, to her story.  I loved Amber’s story, because I want to be an RN as well.

     It was much more helpful than reading about the disease in a book; you can see that schizophrenia seems to be on a continuum.

     Hearing the stories and seeing the pictures impacted me more because its more personal, more relatable than textbooks.

     It’s pretty amazing that I have learned so much from these people that I would never meet or listen to otherwise.  Thank you.

     It was an awesome experience that helped to break down stereotypes.

     Hearing the individuals talk this way about themselves was a lot more informative and hearing the pitch/tone the way they talked helped me think how they were feeling.

    I was shocked after hearing the stories.  The stories were at some points heartwarming then others breaking my heart.  Hearing the narrators speak brought the point across better.

 

It is clear that many of our students changed their minds about persons with schizophrenia from the presentation.  For more information, or for questions about using material on our website with students, please contact:   lynda@schizophreniaoralhistories.com

 

References

 

Link, B. (1987).  The social rejection of former mental patients:  Understanding why labels matter, American Journal of Sociology, 92, 1461-1500.

National Alliance on Mental Illness (2013).  Schizophrenia Survey Analysis:  Public Attitudes. 

Retrieved from http://www.nami.org/content/NavigationMenu/SchizophreniaSurvey/Analysis_Main.htm

Schulze, B & Angermeyer, M. (2003) Subjective experiences of Stigma, Social Science and Medicine, 56, 299-312.       

Lynda Crane is Professor Emeritus of Psychology at Mount St. Joseph University. She earned her Ph.D. from the University of Maryland and was a post-doctoral Fellow at Johns Hopkins School of Medicine. She has held research positions at the Wright State University School of Medicine (Fels Institute) and at the National Institute of Mental Health. She has a background in mental disabilities, having worked with inpatients at the Springfield Hospital Center, a state-operated psychiatric facility in Maryland, and having published a textbook entitled: "Mental Retardation: A Community Integration Approach." She is co-founder of The Schizophrenia Oral History Project.

Tracy McDonough, PhD is a licensed clinical psychologist and Associate Professor at Mount St. Joseph University as well as co-founder of The Schizophrenia Oral History Project (TSOHP). In 2006, Dr. McDonough won the Clifford Award for Excellence in Teaching as well as Ohio Magazine's Excellence in Education Award. Dr. McDonough is active in several professional organizations, including being a Past-President of the Cincinnati Academy of Professional Psychology. TSOHP is an archive of life stories of persons with Schizophrenia or Schizoaffective Disorder and in 2014, articles about the project were featured in The New York Times (http://nyti.ms/1ipyZA1) as well as The Oral History Review (http://ohr.oxfordjournals.org/content/41/1/27.abstract).