Expanded answers to Q & A session in Osaka (March 28, 2010)

1. (My diagnosis)

The first week that I was in hospital, the diagnosis given me was one of schizophrenia.
After the second week, it was manic depression (bipolar disorder).
Now that I am in my 25th year of lived experience with a mental health diagnosis, nobody cares.
Why is peer-to-peer support so important?
When a doctor gives a consumer a diagnosis ? it is what “they “say about you.
When two people connect and share peer support ? it is what at two of you know about one another. I will suggest that this is the more meaningful understanding.

2. How to change Japan

a) Get angry! (be passionate about the change you want to happen)
b) But stay polite! (loud and angry people are annoying and will be ignored by the people who make the decisions.
c) Talk is cheap. Write! (Words can be shared easily on the Internet and have a long life).
d) Think like a politician. Have a plan. Use communication skills (telephone, writing, face-t-face meeting, attending conferences). Find out what group members are especially good at, and develop their abilities. They will be more confident and happy, too.

3. Differences between Family Members and Consumers

Both family members and consumers know that the mental health system can be much improved. In Ontario, the voices of families are still not as big as they could be in the policy and decision-making areas of mental healthcare. Consumers do have a bigger role to play.
Family members and consumers both share the same wish: the best health outcomes for the client/patient/consumer/survivor. However, in general, family members do not want risk; they find that the trial-and-error method of recovery can be very stressful. On the other hand, mental health consumers instinctively know they have to explore new ways to do things differently as they attempt to take the path of recovery. It can be said (again in general) that family members and consumers may disagree on the degree of change possible to attempt recovery. Example: family members may discourage a loved one from going back to work.

4. Good and bad of Partnerships

Good: all groups in a partnership share the power (in general, they are supposed to be equals)
Bad: In practice, some partners are more dominant and others are less dominant
Good: efficient use of people and resources
Bad: small groups have to work very hard to do their share sometimes
Good: “strength in numbers”
Bad: “just one of many”
Good: a distinctive and strong “one voice”
Bad: compromises have to be made to come up with the position all can agree on
Good: government will listen because a coalition is stronger than one group
Bad: government will ignore over time a partnership that says the same thing over and over again (“cry wolf”)
Another problem is when an organization joins many different coalitions. One should stick to a few and choose them for their strategic value. Just because you are friends with another group is not a good reason to be partners.

5. Taking Charge of Personal Recovery

Three things to consider:
a) Your health
b) Your family
c) Your money (or job)
The order of these things is very important. The moment you change the order, you are at risk of getting sick (or taking a step back from recovery).
Example: you stop listening to yourself, but become what your family wants you to be. They do not know your individual strengths and weakness; if you are on the path to recovery, you will have greater insight. While respecting your elders is important, taking charge of your own life is even more so.
Example: You think you do not have enough money, and worry too much over it. Or you try to get a job that gets you more money, but the job is stressful. You get sick again. You lose the job. And because getting sick costs money, you have even less money than before.
Remember: your health (both emotional and physical) comes first; all else is unimportant.

6. What is “lived experience”?

a) It means having “been there” ? experience of living with a mental health diagnosis
b) Benefited first from individual understanding, and then shared knowledge with other people through peer support ? learned not to repeat past mistakes
c) Share and pass along expertise not just to other consumers and peers, but to professionals and family members
With consumers ? peer supporter/peer support worker
With government ? policy maker
With scientists ? community-based researcher
All of these are JOBS ? that pay real money

7. How can professionals enable consumers to recover?

Listen to their stories ? carefully.
“People hearing without listening” ? Paul Simon (Simon and Garfunkel’s Sounds of Silence)

8. Osaka Self-Help Centre phone number:

06-6352-0430

9. Bochi Bochi Club

06-6973-1287 (14:00 ? 17:00)

10. What do I mean by “culture”?

140 languages are spoken in Toronto.
Chinese is the second most popular language in the greater Toronto area.

11. What I like and don’t like about Japan:

a) Japanese people are polite. BUT a society that is too polite will not change. Recovery is not polite. Personal recovery is challenging social norms. Personal recovery is messy sometimes.
b) Japanese people are respectful. BUT a society that is too respectful will obey without asking why. That is why any culture that respects doctors will have a hard time believing that consumers can be experts about recovery.
c) Japan is a very orderly country. I especially appreciate that the trains run on time. BUT because of that, it is a culture that wants everything in its place. As I have said before, recovery can be messy and involves “out of the box” thinking.