Psychiatric Rehabilitation Journal, Vol. 22, No. 2, 1998. Copyright Notice: This material is posted with the knowledge and permission of the Publisher, Center for Psychiatric Rehabilitation and Trustees of Boston University. Granted September 8, 2008.
To have a mental illness in Western society is to be treated as an outcast. Living most of my adult life with schizophrenia, I have felt stigmatization. I would like to share how it feels to have a psychiatric disability and be rejected because of it. Then, I will describe what, for me, proved to be sources of courage and hope.
A little over 20 years ago I had a mental breakdown. Being a naive and vulnerable teenager, I left home and family to join a cult. The rigidly controlled and harsh environment of this cult was like that of a prisoner-of-war camp where members were brainwashed by means of techniques similar to those used during the Korean War. For me it brought with it the onset of vivid auditory hallucinations and was the beginning of a journey into the psychiatric system--the psychiatric hospital, mental health center, and psychotropic drugs.
Looking back, my biggest struggle was not with the illness itself, but with being tossed aside by the normally functioning world and made an outcast of society. Being treated as less than human because of mental illness sent me into the darkest depression. Nothing compares with being rejected over and over, and treated as if one were a freak, unworthy of respect. No, the psychotic symptoms were not the cause of my despair. It was realizing that, because there is no cure for schizophrenia, I must wear this label for the rest of my life, and as a result of it, be considered different and treated as an inferior being.
The world has blamed me for not holding down a job and supporting myself. People said I was lazy because I sat around a lot when I did not feel well. I was apathetic and there was little to inspire me. People felt it was my fault that I was not motivated. I would sleep too much and overeat. Then, I would consume large amounts of caffeinated drinks in an attempt to function normally.
At times, trying to communicate with people who spoke too fast was difficult. I was not able to follow their train of thought. And, when I was under stress, my words came out jumbled and did not make sense. I wanted to be just like other people who went to college and got a degree. But, because of my disability, it was impossible for me to graduate. Often people talk around me and not to me. They do not look me in the eye. I want to tell them I am a human being, too.
What is it about people with mental illness that offends the world? Or rather, what does this rejection of people with mental illness say about the society we live in? In the United States, we have a country of great wealth in which many hold a materialistic view. This mind set is one that places high value on the accumulation of goods and the achievement of status. The status of a person is determined by external standards such as his or her wealth, attractive appearance, and academic credentials. So often, people with mental illness are poor, cannot keep up their appearance, and are mentally impaired. This capitalist country stresses competition and reward for achievement. Many of my friends and I with psychiatric disabilities cannot compete, gain status, even survive on our own. I have found that most people want to associate with those who are strong and successful; very few befriend the weak, the damaged, or the broken.
Stigmatization is a way of treating people that indicates to them that they are considered abnormal and substandard. When people with mental illness are ostracized in this manner, they often befriend each other, forming a bond. This bond is strengthened by the rejection they experience at the hands of others. Being desperate for love and acceptance, we draw close to one another, forming a subculture. It is not based on the values of our materialistic culture, but on love and caring, mutual respect, and cooperation. These attitudes can be found at the rehabilitation center I attend that is associated with our mental health center. It is called the Clubhouse. It provides opportunities for members to socialize and work on specific tasks. Also, there are educational projects that provide opportunities for study. All this is done on a volunteer basis. There I am not judged by external standards. There I find a spirit of cooperation, not competition. At this center I gain a feeling of community that inspires hope. It is an oasis in the desert of a cold world. There I find acceptance. I have contributed to the community by serving as editor of our newsletter. This work was a way for me to get outside of myself, to do something for others and be productive, all in an atmosphere of approval.
Center members have told me stories of discrimination and prejudice. Some of these stories have involved employers and co-workers. One friend said she told her supervisor that she had schizophrenia. Her supervisor then began to act afraid of her, and from that point, often raised her voice in anger and verbally abused her. Another member was harassed by co-workers after they learned that she had depression. They told her that her judgement was not trustworthy because of her condition. Under the circumstances she felt powerless.
Members who have lived in residential facilities have sometimes been treated badly by the staff. One 20-year-old woman who uses a wheelchair was addressed by a physician as though she were a two year old. At the time, she had been taking college courses. The doctor's voice was "sing-songie" and condescending. A man at a different facility was denied antidepressant medication and told he should just "pull himself out of it." He was extremely depressed and suicidal. This withholding of medication went on for weeks, until he threatened to call the doctor. Only then did they give it to him. Another Clubhouse member had the experience of being on medication that made her laconic. It made it difficult for her to speak and caused substantial weight gain. She felt that her speech difficulties and excessive weight increased prejudice against her.
I was told that once, arrangements were being made to go to a restaurant. The manager said they would close the restaurant because "the public would not want to eat with those kind of people." When one member of the Clubhouse went into a convenience store, the manager treated him with contempt. Because of his mental illness, he had had difficulty keeping up a neat appearance. He had become overweight, had a scraggly beard, and his clothes were not clean. When the manager gave him his change, she was aggressive and threw the money into his hand. Whenever he entered the store she refused to speak to him and had a scowl on her face.
Another Clubhouse member told me that he had been ostracized by his family and relatives. When there were family gatherings, relatives all talked around him and only to each other. They did not involve him in their conversations. This made him feel unloved and unwanted. To me this seemed especially tragic, for home and family should be where people find acceptance and support. A basic need is to have someone to talk to. Sometimes relatives will not take the time to talk on the telephone or visit a family member in his or her home. They are often unavailable. The message given is that the person is not worth the relative's time or affection. When relatives neglect a family member, he or she may desperately search for this care outside the family. Friends may become the primary source of emotional support, often providing what the relatives have failed to offer. Another member told me she was severely abused by her relatives because of emotional difficulties. When living at home she did not feel well enough to function normally and could not work. They screamed at her, calling her, "weird," "lazy," and "a loser." Her mother-in-law even tried to strangle her! Naturally, this made her attempts to gain mental stability more difficult.
I can cite examples of prejudice from my own experience involving co-workers. One occurred when I volunteered at a domestic violence shelter. The director was aware that I had a mental illness because I told her this when I was hired. This information must have been spread around, for I soon found others knew by comments I heard. After I had been working at the shelter for several months, one of the paid staff members abused her position by mistreating workers. I allied myself with those who had been mistreated and spoke up in support of them. This person then said to others behind my back, "She's crazy, you know!" And, in this way she attempted to invalidate my viewpoint.
A second occurred while I was volunteering at a hospital library. I worked with another volunteer, a woman who used a wheelchair. She and I checked books in and out at the main desk. After a few weeks, she told me about a problematic work situation in another department where she was a paid employee. With tears falling, she spoke of her dilemma involving a career decision. I listened and tried to comfort her. She said she felt depressed about her situation, and it was then that I told her about my problems. I told her I had a psychiatric disability, called schizophrenia. An aghast look came over her face. I tried to explain what kind of symptoms I had dealt with in an attempt to educate yet another person. But from that moment her attitude became one of contempt. When she looked at me, it was as if she were looking at some sort of strange creature. Even though she was spending her life in a wheelchair, my disability was abhorrent to her. Because of such prejudice, Clubhouse members need each other for support and understanding. But I have also found acceptance in the religious community to which I belong. It has been a source of hope and inspiration. I attend a church and an ecumenical Bible study group. Most of the people I encounter there are kind and understanding. Christ, the founder of my religion, was rejected by the world just as people with mental illness have been. He was a friend of the outcasts and spent time with the poor and downtrodden. His followers try to imitate Him by caring for the poor, sick, and oppressed. In contrast to the materialistic culture, my religious community values people with disabilities. They have reached out to me and have shown compassion. There are other people in my church who have psychiatric disabilities, but they remain actively involved. I have followed their examples by volunteering in the office and kitchen. Being able to contribute in this way has given me a sense of belonging. Fellowship within the religious community is also valuable. It allows me to spend time with people who have similar beliefs, and is a way for me to get outside of myself and think about the needs and concerns of others.
I believe the source of the religious community's love and care for the sick is God. Having faith in God has also given me hope. By participating in religious practice, including the disciplines of prayer and meditation, I have gained new strength and a new outlook on life. Granted, I still have problems, but my attitude has become one of optimism. I have found a spiritual dimension of healing. I do not believe God gives up on the hopeless ones. This may be seen in the persistent efforts of the psychiatric clinicians. I began seeing a psychiatrist who has never given up on me. When I had my first appointments I was especially isolated; I had no friends and relations with my family were strained. It was particularly important at this time that I had someone to talk to. Since then, for over 20 years, he has been an instrument of God's love, providing consistent, reliable treatment. I would like to point out that I have been considered and treated by this doctor as more than a sick person or disease. I have been treated as a whole person which is body, mind and spirit. Even though schizophrenia may be the result of a broken brain (as in the biological model of mental illness), treatment needs to address the meaning or purpose of life. A person's belief system can instill hope.
An integral part of my recovery has been my search and discovery of meaning for my life. This is a philosophical and psychological issue that goes beyond mere chemical imbalances in the brain. In this search, I have developed a new world view. I have struggled throughout my adult years to become conscious of decisions I make that either promote psychological well-being (which affirm life) or undermine my mental health (which I try to avoid). My therapy has included open discussion of ideas and issues pertinent to my view, and beliefs about the world as well as the administration of medication. When a patient is treated respectfully by a psychiatrist who is empathetic and patient, much of the discrimination by society is counteracted. This is a prerequisite for hope.
Although there is much good in the world and in human beings, much of the inhumane treatment of people with psychiatric disabilities portrays the dark side. People with psychiatric disabilities are regarded as inferior and not worthy to exist. When I have felt this judgement, I have felt degraded and worthless. Perhaps, as the public learns more about mental illness, fear and hatred will be replaced by understanding. From the care I have received through mental health professionals and the rehabilitation center, I have gained some of the strength needed to cope and survive. It is necessary for people with psychiatric disabilities to have reliable, consistent feedback from others that we do, indeed, deserve a place in this world. And I have found that having a relationship with a religious community feeds a still deeper need, one that goes further than therapy. It is my faith that empowers me to get out of bed every morning and to not give up trying. Although I have an illness and have suffered because of it, rejection and discrimination will not destroy me.
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