Motivated by love: a mother's tale

Denied citizens

Dianne Froggatt
Dianne Froggatt

"Imagine you had a son or daughter in their late teens or twenties. Little by little you realize that things are not right, in fact they are very wrong. He is talking to himself; she is staying in her room curled up in the blankets. He won’t go out in the day because he thinks people are threatening him. She refuses to eat because she thinks you are poisoning her.… Everyone in the family is uneasy, then alarmed at what they hardly dare to acknowledge – a fearsome possibility of schizophrenia, of mental illness."

"You stand at a crossroads. Will you seek treatment for your loved one? Is the stigma so entrenched that you won't? Will you get treatment if you seek it? If you get it, will you be able to get help for yourself to enable you to manage the new reality?…"

"During his early hospitalizations we would visit him daily. He says he still vividly remembers me walking down the length of the ward wearing my distinctive woolly coat to be with him! If he still remembers now, then the family’s love must have been very important to him. And I recently spoke of this to La Nacion in Buenos Aires where families are not allowed to visit for several weeks after their loved one is admitted to hospital. How inhuman!"

"As his friends dropped away from him the family tried to take their places, becoming his peer group. As his ability to manage his life in society drained away, it was his family who took him to the theatre, took him to the country[side], took him to his doctor, his dentist, and as he drifted further from a coherent social life it was his family who bought his clothes, his shoes and continued to care for him…"

"…since 1987 I have had the honour to run the World Fellowship for Schizophrenia and Allied Disorders (WFSAD) as its Executive Director.…The aim of the organization is to strengthen families through empowerment; to help build self-help organizations which will assist families to learn about these illnesses and be skilled enough to work with their relative towards stabilization and improved functioning."

"Now, 25 countries have national family self-help and advocacy organizations. And at least 25 to 30 more countries have regional or local family organizations, some of which were founded with the help of WFSAD. The family movement is already nearly 30 years old and the oldest family organization comes from Japan. It’s called Zenkaren. It is also one of the largest, as is the National Alliance for the Mentally Ill in the United States. Both these organizations count themselves among our membership. And the smallest organizations are in Uganda and Kenya, where brave people – Walunguba Thomas, a psychiatric nurse in Kampala, and Lilian Kanaiya a retired nurse and mother of two people with schizophrenia in Nairobi – started national family organizations…."

"With every day that goes by more people develop brain disorders like schizophrenia and many of them will have difficult symptoms. They will not be able to function well in society unless they have appropriate treatment and a high level of support not only from their families but from government services and non-government organizations together…."

"You cannot sweep the area of mental illness under the rug any more. There are too many of us raising questions and raising them too often for them to be disregarded or given lip service. With every question we ask to every politician we open the doors for mental illness wider and wider and let in more and more light so that in the end no one will be ashamed. No one will whisper in the corner; no one will hide their relative away. People with mental illness themselves will not bear the internal stigma that comes from society’s disdain from society’s revulsion, from society’s neglect."

-- from Diane Froggatt's keynote address to Ministers of Health at the World Health Assembly, Geneva, 2001