jsmith via Getty Images
Science Photo Library - PASIEKA via Getty Images
Families who care for people with schizophrenia once had an organization that gave them a national voice. They no longer do. This lack of national representation impacts not just our own situations; it also hurts the people we support, because they are often unable to advocate on their own behalf.
Efforts at improving mental illness literacy in Canada and the U.S. have been hampered by a problematic notion that education about biological aspects of mental illnesses will lead to greater stigmatizing of people with these disorders.
Psychotic disorders are frequently accompanied by significant and disabling cognitive losses. Why don't people learn about these cognitive losses? This lack of information has enormous negative consequences. For instance, families who have not been told about these cognitive losses, may have very different interpretations of a family member's difficulties in keeping a room clean or in not relaying phone messages. Parents will respond differently to these kinds of situations if they learn that this behaviour isn't willful, but is symptomatic of an ongoing brain disorder.
The annual convention of the U.S.-based National Alliance on Mental Illness (NAMI) just finished educating its 1700 participants on the latest research relevant for people living with severe mental illnesses.And what's the situation in Canada? Families here certainly aren't being led to advocate for the most helpful education programs for people living with psychotic disorders.
Unfortunately, the beliefs of the "psychiatric survivor" movement are having increasing influence on peer support workers. Last month my daughter participated in a program offered and was told by the peer leader that they were all there because of the trauma and abuse they had experienced as children.