What are You, Pagal?

By Sujata Dey

"Pagal!" When I heard that word as a child, I knew it was time to run. Growing up as the descendants of immigrants from India, pagal is one of the few bad words that I could remember. The word means "crazy" or "mentally ill." I remember pagal as a condemnation -- something my mother used when she was really angry at one of us kids.

Mental health disability is something which takes on a very different meaning in non-Western cultures.

In some cultures, such as in Southeast Asia, there can be no concept for it -- just an idea that some people go through "ups and downs." In some cultures, people with mental health disabilities are seen as the result of a curse or being in possession of unbelievable powers.

The result is that new immigrants often don’t get services which make sense to their way of life.

"Preetha" is a South Asian woman whose mother was diagnosed with manic depression. (Preetha doesn’t want her real name mentioned because some of her family are still unaware of her mother’s disability.)

Preetha is now 25 years old, but when she was young, she often had to accompany her mother to doctor’s appointments and translate, since her mother did not speak English well.

"It’s no fun to be dragged from doctor to doctor when you are a kid. We went two times a week," she says. "I think it is difficult because she relies on me and I end up being the parent. I believe I have to take care of her and the roles are reversed."

Language is a problem for many new immigrants, especially when you have to entrust very personal information to a relative or caregiver. For Preetha’s mom, her inability to speak English well did not earn her a lot of respect from doctors.

"I think, because we were East Indian women, that she was treated different. They would talk down to her and very loudly. They didn’t treat her like she had opinions, even about her own health. She got pushed around. She didn’t have any input."

Preetha feels her mother was often diagnosed improperly, since medical professionals didn’t understand what she was saying.

Language and culture also made support groups impossible. Coming from a rural village in India, Preetha’s mother was not used to working in co-ed groups.

"She doesn’t feel comfortable in front of men and she doesn’t open up to people of the opposite sex. She went to one group where there were men and she didn’t go back."

Preetha’s mother asked if there was a group for women only, but was told there was no funding for it.

Lisa Hanna is a researcher in sociology at Ottawa’s Carleton University. She interviewed caregivers of people with manic depression and schizo-affective disorder as part of a study she directed.

To get a diverse sample, Hanna purposely shied away from support groups, which she says tend to be white and middle class. "If an Asian woman wants to attend one of these groups, her culture isn’t considered, say, if she is a Muslim woman. And that’s problematic."

Hanna worries that as less money goes into mental health, society will rely more on support groups and other services which may not be culturally sensitive. She says these services will not include the diverse values about mental health which non-Western cultures hold.

"Many cultures view it as a punishment from God. Egyptians perceive mental illness as one being in possession of demons."

Other times, the phrase "mental illness" simply draws a blank. Kalpana Das is the Executive Director of the Intercultural Institute of Montr‚al. She has been doing cross-cultural workshops for health providers about mental health.

"First, mental health as a concept: What does that mean? What is stress? They don’t know what you are talking about. Mental health, or mental illness, is more biomedical. Other cultures -- Asian cultures, or African cultures -- view health issues more holistically, as some kind of balance with the soul."

In India they have the notion that something is "not well," that their inside is not well. The mother is worried about something. The children are worried about studies or something that happened. It is a disharmony within the family.

"If you had a psychological problem, in many cultures you would go to the family, " says Hanna. "You wouldn’t go to a special psychiatrist or a doctor on the other end of the system."

Das says instead of focusing on biomedical treatment, South Asian cultures will look for a socio-spiritual treatment. Often, people will seek a religious figure or do a "puja" -- a ritual which is dedicated to a certain god or goddess. She says India has a pluralistic system, in which beliefs like astrology -- which is like therapy --are practised with Western medicine.

In East Asian cultures, often a mental health problem may be seen as a disharmony between ying and yang, she says.

In some African communities, she says, there is more of an emphasis on the community. "If someone is mentally ill, there is something wrong with the whole group. They will try a form of trance and all kinds of sacrifices.The belief is if the person is sick, the community is sick," says Das.

Hanna agrees. "Many of the family members from various cultures, South Asia and Haiti, speak about turning to spirituality and the belief of a higher power as the only existing being who could understand their suffering."

Preetha remembers her mother’s own beliefs.

"If you want something, go and pray." My mother used to say that, says Preetha. "My mother thinks that someone put an evil curse on her because of something in her past life. She doesn’t understand serotonin [brain chemical] levels."

Das believes that the Western-based medical model often claims a superiority that it does not have. If Western-based medicine were to learn from other cultural views, she says, it would be more effective. Das has been looking at Brazil and Zimbabwe and says that other treatments can heal more effectively.

[Health providers] have somewhat learned to respect that other people have cultural differences. But ultimately, when it comes to what kind of treatment health care workers will use, they are sticking to the Western model. They are not willing to use the wisdom of other knowledge systems of other cultures.

"I once knew of a Haitian mother who had her son in hospital for several months and they did not know what was wrong. They kept doing tests. After a couple of months, she said, I’ll bring him to Haiti to see a healer. But the hospital wouldn’t let her do that. If the doctors don’t know what is wrong and it is the mother’s wish to try something else, it’s in the son’s interest. It shows the arrogance of the medical practice."

Hanna says that while many look to their own spiritual value systems to heal from mental health problems, they may not look to their own communities. In large, extended families, a mental health disability is still shameful.

"In different ethnic groups, there is a strong, strong desire to keep mental illness quiet in the family," says Hanna.

Preetha’s mother hid her manic depression in India and in Canada. "She only told certain family members," says Preetha. "When she was sick, they just hid her. They tried to mask it. I remember my mom slept all the time in her room and we were not allowed access to her room. "

Hanna says that in some cultures, marrying a suitable partner is a problem. The stigma of a mental health disability makes a prospective mate harder to find.

For Preetha’s mom, a little bit of trickery was in order. They didn’t tell Preetha’s dad. He was a much older man who had already been married once -- not a prime partner, by some cultural standards.

Hanna argues that the stigma in some cultures puts people of colour with mental health disabilities in a double bind. "I had one case of two sisters who were born in Haiti. One of the sisters had manic depression and schizophrenia. She came from a small rural town, where she grew up. They were the only [black] people and were treated very poorly in junior high and high school. And when she was diagnosed in her 20s, that was the final blow."

But Hanna points out that the stigma in North America is no better. And positive portrayals do exist. Das says that while my mother may have used "pagal" when she was angry, it’s not necessarily a negative word. "Pagal is also used to describe many mystics. They are pagal, but everyone knows that there’s truth in there."

(Sujata Dey is a freelance writer and disability rights activist living in Guelph, Ontario.)