Mary
You may start, and that is a good distance from me?
Kasumi
Yes, I think.
Firstly, can I ask you about preparation for establishing WNUSP? In 1989, WFMH conference was held in Auckland. Did you participate in it?
Mary
Yes. I did.
Kasumi
Did you participate in one of the other mental health commissioners or something?
Mary
Well, at that time, the conference was organized by the Mental Health Foundation. In those days, there was no mental health commission in New Zealand. The mental health commission in New Zealand started in 1996.
Kasumi
And you become the commissioner in…
Mary
2000.
Kasumi
2000, yeah. But, you was involved in the establishment of blueprint.
Mary
Yes, so I did some work for the mental health commission and some of that work was to write some of the blueprint and the parts that I wrote were describing about what a recovery-based service looks like.
Kasumi
So, your participation of WFMH conference is not as one of the commissioner or advisory commissioner?
Mary
No, I was there really as a ? I was not representing anyone. I was there as a participant.
Kasumi
I think that WFMH conference in 1989, to establish WNUSP was decided?
Mary
Well, at the conference in 1989, we did have some meetings to try and form an international user-survivor network. And there was a woman on the board of the World Federation for Mental Health, and her name was Hilda Robbins. She encouraged us to try and form a consumer survivor network. We had some meetings, but there was some disagreement at those meetings, and we did sort of decide to do something but nothing really happened until we had the meetings 2 years later in Mexico City.
Kasumi
Is she a user-survivor, Robbins?
Mary
Hilda?
Kasumi
Hilda, yes.
Mary
Yes, Hilda had her own-lived experience of depression but Hilda was an older woman and she wasn't part of the movement, but she was very keen to see a network, an international network develop.
Kasumi
Where was she from?
Mary
She was from the United States.
Kasumi
Did professionals encourage the international network?
Mary
Yes, they were supportive, but the professionals - I don't remember that they actively supported it but they certainly didn't oppose it. They were quite happy about it.
Kasumi
Did Hilda ask you to become a leader?
Mary
Yes. So what happened was after the conference in Auckland, Hilda got in touch with me. She contacted me and she said, "I want you to come and lead the meetings in Mexico at the World Federation for Mental Health meeting in 1991. She said to me, "You seem quite organized and you seem to be able to chair our meetings. I think you would be a good person to chair these meetings to get this network going."
Kasumi
Is there any relation to your trip in 1990 and world network?
Mary
My trip in 1990, no relationship because I went on the board of the World Federation for Mental Health. I think it was 1991, so I didn't really have a strong relationship, and so my trip to the USA, England and the Netherlands that I wrote about, that had nothing to do with the World Federation for Mental Health. It was a separate activity to developing the worldwide network.
Kasumi
Was there any purpose to establish an international organization in your trip?
Mary
In the trip that I wrote about, the trip?
Kasumi
Trip in 1990?
Mary
The purpose of the trip was not to establish an international network. It was to find out what is going on in user-lead services and alternatives in those three countries, and to learn from the lessons and to bring those messages, those lessons back to New Zealand.
Kasumi
In 1991, from 18th to 23rd August, World Federation for Mental Health conference was held in Mexico City, and I read the minutes first committee meeting on the website. Was the first committee meeting held as one of WFMH conference or independently?
Mary
The first committee meeting was held at the conference and before that committee meeting, there were, I think, about 3 days of meetings, so I think at maybe 4 in the afternoon till 6, and all the consumers, all the survivors, they came to a room, and I had an agenda and I said ? and this was at the conference but independent, so it was just a room the conference gave us to have our meeting. So, we weren't a part of the World Federation. They just said, "We will give you a room so you can have your meetings."
Kasumi
All meetings were independent?
Mary
Yeah, so they were independent meetings and they were very difficult meetings because in the room you had conservative people and you had radical people but you also had a lot of Mexicans who were quiet and some Americans who were very loud. The Americans were very rude.
Kasumi
Is American radical or not?
Mary
I mean, when I'm in America, I mean from the United States.
Kasumi
Yeah, but radical or not? Did they have a radical opinion?
Mary
I found on that occasion ? in America, if you come from the middle or the South, you tend to be conservative. If you come from the East Coast or the West Coast, you tend to be more radical. So, the people who were the problem for me in these meetings were from the South. Some of them were from a state called Tennessee and they were very, very rude. This is where I found some people from the United States very difficult because they have the attitude that they own the world, that they're the most important people in the world and that nobody else really matters much, and then you had many Mexican users sitting there and they don't like the Americans. They call them ‘gringos,' but the Mexicans were more polite but they were very annoyed with the Americans. The Americans were saying we want to run this meeting by what they call Robert's rules, which is a very formal way of running a meeting, and I said, "No, we just want to have a meeting where we ? we don't want a formal meeting, we want a good discussion." So, they were very difficult meetings, and then at one point, a family member from Canada, she wanted to join the meeting. And we said, "No." And she got very - she went out, she was crying because we said, "No, you can't come to our meeting."
But in the end, we did the work to design this new international network, and on the final day, they said, we need to elect a chair and a committee and I said to them, "I don't want to be the chair," and the Mexicans said to me, "If you're not the chair, one of those gringos will try and be the chair, one of the Americans." So, I was in a dilemma because those meetings had been very difficult, and I didn't really want to be the chair, but they said, "Mary, stop the gringos. You must be the chair." And because most of the people there were Mexican and they supported me, I overwhelming won the vote, and so the gringos were out. They didn't get in.
So then I think there was a committee and there were a couple of people from different parts of the world and one of them was Japanese, and his name was ? I don't remember so well.
Kasumi
Masaji.
Mary
Masaji yeah, Koganezawa, yeah. And I don't know where Masaji is, I haven't ?
Kasumi
He is, I think, in Tokyo.
Mary
Yeah. And then who else was on that committee? Some Europeans, some people from Europe, I can't remember but there was a committee of people from around the world. So, what the world network did was we were totally independent of the World Federation, but we had meetings when the World Federation had their conferences. So, that meant that people would be able to pay to get to the World Federation conference and we can have a meeting. So, the next World Federation conference was in Tokyo. And so, we all met again. Between 1991 and 1993, we did some newsletters. I think we did some meetings we did a bit of work. One of the things that happened was that we were asked to represent the network at international meetings or conferences. For instance, I remember going to Japan in 1993, to Tokyo and Osaka I think, to talk before the World Federation conference and that was on the basis that I was the chair of the World Network. So that's it. So, there were some activities like that. We did the newsletters. We tried to raise money but it's very difficult.
Kasumi
In the first meeting, how many people participated?
Mary
In the meetings to organize the…?
Kasumi
Yeah. 1991.
Mary
I think probably about 40 or 50. Many of them were Mexicans. Probably about maybe 20 or might be 60 people. It depended.
Kasumi
Why you didn't want to be the first chair of the worldwide network?
Mary
Because I was very upset by the rudeness of the Americans and I thought I don't want to be part of this. So that was really why I was reluctant because I thought I can't be bothered dealing with rude people.
Kasumi
What is the main purpose of establishment of WNUSP?
Mary
Well, I would have to go back to the documents, but it was to make sure that the voice of people, lived experience, was heard at international forums. I would have to go back to the documents to see what the other purposes were, but it was an international advocacy organization.
Kasumi
At the general assembly in 2001, I read there was no person present from Africa and Middle East, and from the first conference to 1999. When the WNUSP had conference with WFMH, is there any person from Africa or Middle East?
Mary
Yeah. So, there was Sylvester - there was a person from Zambia who was involved, but from the Middle East, no. We were concerned that also Latin America, and we didn't do so well at getting people from all the different parts of the world, and that was quite difficult, and especially if they were from a poor part of the world, it's quite hard for them to find the money to get to the conference, and we had no way of paying for people. So it was very difficult.
So you talked about 2001. What was the …?
Kasumi
In Vancouver, they said there is no person from Africa and Middle East and…
Mary
We were about…
Kasumi
In Asia, except Japan, there…
Mary
Yeah, the only place from Asia was Japan. One of the problems is that in low income countries, it's kind of interesting, they don't have much in the way of mental health services. So, they don't get much in the way of a survivor movement. Although there are people in those countries who experience mental distress and who have been treated badly, there isn't a system where that a movement of people have come from where they are criticizing that system. So that's one difficulty.
And also another difficulty is when you live in a political system that is not a democracy then you don't have the contest of ideas that creates a movement, a social movement. For instance, when I was in China and I talked to people, and I only talked to a few people, - there are many, many people in China but you could see that they don't - they're not in an environment where you protest or you say to the authorities, "We don't like what you do to us and we want you to do it differently." I don't think they're living in fear of doing it, I just don't think it's part of the way they express themselves. So, that's another limitation on how many countries would be part of this international network. One is not having, one is poverty, another is not having a mental health system, another might be that you are not in a democratic system. And all these things mean that for social movement as we know it is really not going to take off. So that's one, there is a problem.
Now, since I stopped being so involved in WNUSP, and WNUSP was more located in Europe, they did quite well because Europe has an aid, you know, an international aid relationship with many countries, especially Africa, parts of Asia, and so it was easy for them to ? through their ? especially the countries that they colonized, so they have an ongoing relationship where they give money and resources to these countries, and so they had already networks in these countries through their international aid or some other mechanism where they could find people in the countries and ask them to be part of the network, whereas in this part of the world, we don't have those networks.
In Denmark, the WNUSP had an office in Denmark. So, they go to the Danish Foreign Ministry and they have programs all around the world to assist people in low income countries. They can ride on the back of these programs to find people.
Kasumi
So, WNUSP support low income countries like Africa or Asia to establish local…
Mary
Yeah. Once WNUSP was in Europe, they made some quite good contacts in Ghana and Uganda, but also people from South Africa came on board, and I think then probably other countries as well. I think the hardest countries to get people from are the Middle Eastern countries, probably. I think it was easy to find people in the sub-Saharan Africa, but you know, the top of Africa and places like Saudi Arabia and Kuwait and all those countries, it's very hard to find people I think. But when the world network was in Europe, they did ? and also they found more people in Latin America. So that was really good. They had contact in India, Bhargavi. So, they did a better job than we could at finding people from other countries.
Kasumi
Did you go to the WNUSP conference in your own money or…?
Mary
How did I get there? I think I managed to ? no, I was on the board of the World Federation for Mental Health for 4 years, in 1991, 1993, and 1995, I was paid, my airfare was paid because I was a board member, so they paid my airfare to go to the meeting, and they paid for my hotel.
Kasumi
Other people participating in WNUSP conference, how they got…?
Mary
They were paid for by organizations in their own country because we had no money so we couldn't fund people to go, so they found a way to get there through their own networks in their own countries. I don't think many of them paid for themselves.
Kasumi
In 1999, WNUSP got funding from international disability foundation, how did you find that funding?
Mary
Well, we had a relationship with the World Health Organization and we had been involved in their disability and rehabilitation unit, and they were based in Geneva and I talked to those people and said, "Where can we find money?" We met a man called Neil - he was a Swedish man I think, and he was the director of this foundation. What was it called, the International Disability Foundation? And we had a planning session in Denmark, and he came to the planning session and he was quite rude to us. He comes, "You don't know what you're doing." He kind of told us off for being amateurish, for being not professional but amateurs. So, we felt very deflated by that. I think he was a very unhappy man, I think he was quite depressed. But anyway, he ? now I don't know whether he gave the money after that meeting or before that meeting but we got $30,000. Now, what did we do that money? Now, I can't really remember what that money was used for actually. I mean, it took us a while to spend it, but I think ? I can't remember now. Yeah.
Kasumi
Okay.
Mary
I mean it was probably used to get people to meetings. I mentioned that in one of the [Unclear]. Now I think the money stayed with the Danish people, that the Danish User Network unit that had the office for WNUSP and they were called LAP, and they were based in Odense, which is in the middle of Denmark. So, they were controlling the money, because by that time, I was no longer the chair. I stopped being the chair in 1995 and that was in Dublin. But I still was involved.
Kasumi
About the name of the organization, name was changed in 1997?
Mary
Yeah, when we had our first committee meeting and I will blame Masaji for this actually, when we had our first committee meeting in 1991, we said we need a name for this organization, and we were in a hurry. We didn't have much time. We named it the World Federation of Psychiatric Users. Now, this name was a problem; firstly ‘federation.' In English, ‘federation' is a well-organized structure of different bodies that come together, but we were just a little network. So, it didn't describe what we were very well. The other problem with the word ‘federation' was that it connected us to the World Federation for Mental Health. So, people thought World Federation for Mental Health, World Federation for Psychiatric users, are they joined? And there was always a debate within this network saying we don't want to be associated with the World Federation for Mental Health and we don't want to be dependent on coming - we don't have to meet at their meetings because we don't really like what they're staying for. So, this was a continuing debate. Having the word ‘World Federation' in the name like World Federation in their name was a bit irritating. Then the word ‘users,' well not everyone uses that word, and there is no term called ? there are no people anywhere in the world that go around calling themselves ‘psychiatric users.' Maybe in Mexico they call themselves ‘usuarios,' that's just the Spanish term for user. So, it was a very bad name, and so in 1997, in Finland, they voted for a name change. It was only a name change, there was no other change. That's where it became the World Network of Users and Survivors of Psychiatry and that was a much decent name to have.
Kasumi
In 1997, European Network also changed its name.
Mary
Yeah, that was the European Network of Users and Survivors of Psychiatry. What were they called before then?
Kasumi
Users and ex-users in Mental Health.
Mary
Yeah. The word ‘consumer' is not liked by many in the movement. It tends to be used most by the Americans and also by the Australians, a bit by New Zealand, and so the ‘users' is a compromised word but what the users and survivors did was, the users they tend to represent the more moderate people and the survivors represent the more radical people. So you could bring them all under the same banner, if you like.
Kasumi
Was there any conflict between users and survivors in the beginning of the organization?
Mary
Yes, I think the conflict really is far more pronounced in the United States than anywhere else. Around the world, there are people who have different viewpoints, but by at large, there is enough in common I think for people to get all okay, but in the United States, they are very polarized community. You see how they run their politics. Now, they have Trump and they have Clinton, and they go… They are two ends of the spectrum in there and they fight a lot. They are awful to each other. This was very true especially back then, what they call the consumer survivor movement. So there was an awful lot of fighting going on, and you had some of the most conservative people in the international movement in the US, and some of the most radical people, and they just fought a lot. But outside the US, I think the differences were much more muted, so they weren't going to break up a meeting or ? it was manageable.
Kasumi
Someone said the meaning of consumer is different between US and England. US of the meaning, England people don't like name of consumer?
Mary
No. In English, consumer is a word that was most often used as in the business, in the market context. So you had producers and you had consumers, or you had suppliers and you had customers. So, it wasn't used in the health context. That was more in the business context. So then there came a time when people who had used services said "We don't want to be called a patient," because I don't know if you have these debates about language in Japanese, but there are endless debates about language. So, a patient to people was being a subservient to the doctor, being in a passive sort of role, and a consumer was someone who had rights, because they had the rights of the customer in the marketplace. So, you can see that ? compared to patient, a consumer had a stronger base of rights and you wouldn't mess around with a consumer. So, there was some value in it, but then the people in the movement in the US said, "Well, why are we using the word consumer because many of us who so called consume their services, we have no choice. So we're locked up. We're forced to take drugs. So, we are not like a consumer in a marketplace because they choose to buy goods or services and we don't have any choice." Some of them also said, "And we don't like this association with the marketplace" because this is about American capitalism and many people in the movement don't really like American, don't like very capitalistic societies but that's a slight side-issue. So then they had to think, "Well, if we don't like the word consumer, what word are we going to use?" And in Europe a lot, they say ‘users,' like users of services, which didn't have the same association with the marketplace in capitalism.
In America or Australia or New Zealand, consumer was used quite a lot. We started to say service user, so someone ? because one of the problems with user is that in the drug area, people who use drugs, who use street drugs, they call themselves users. But the radical people, they ? yeah.
Sara
Just wondering if I'll heat the soup up.
Mary
Will we take a break in half an hour?
Kasumi
Yes.
Mary
Yeah, thirty minutes.
Sara
Thirty minutes. Because, I was heating, it was very gently heating.
Mary
That's all right.
Sara
Well, it's all ready. I'll be downstairs [Multiple Speakers]
Mary
So, the radical people needed a name because calling yourself as a service user or a consumer, as I said, it implies that you want to be there and nobody is making you be there. And I don't know where the word ‘survivor' came from. But people started using the word ‘psychiatric survivor.' In America, they also used terms like ‘ex-patient' or ‘ex inmates.' So, there was a whole lot of words and they could never agree. Nobody in any country has agreed on a good term, but the disagreement was much more loud in America.
So you see in some of the movement literature they had, it's patient/consumer/survivor/whatever, this was to make sure that everyone felt included because they couldn't agree on a term. So, it's been difficult.
Now, the word ‘peer' is being used a lot more. Well, there are big debates about ‘peer.' I don't get too drawn into them because I mean language, the words you choose are important but there'll always be a problem no matter what term you use, and so the word ‘peer' has been used in recent times more, but people say, "Well, how can I be a peer unless I am actively in a relationship with another person who is a peer?" So, it's like that. So anyway, yeah.
Kasumi
Did the word ‘peer' came from in the movement from person with mental health and disabilities or some other disability movement or some other type of movement?
Mary
In the early days, I don't think people used ‘peer' much. They talked about self-help initiatives. Peer-support is a term that was picked up by the movement. I'm sure it had been around in the English language in other context but I think it was picked up quite strongly by the movement probably in the 1990s, because peer-support are two words in English that you can easily understand why they would go together. So, it's not engineered. That was just a natural kind of partnering of two words. But I don't know where it came from. In English, the word ‘peer' is used in other context like peer review, and the peer are just two people who have the same status or similar experiences.
Kasumi
About forced treatment, in 1991, United Nations principles about mental health care was established. Is there any movement against that?
Mary
In the WNUSP, we did a critique of the principles. I don't know many people saw it but I remember we did a critique of the principles. Now, we critiqued it, I think we used the standard roles for equalization of options to people with disabilities. We may have critiqued them against some of the generic rights statements. I don't know, I can't remember, but we did critique it, and of course the principles kind of said, "Well, you can use force and you can detain people but do it in accordance with the law and try not to do it when you don't have to." We didn't like that at all.
Kasumi
Before the principle was adapted, any movement against it?
Mary
This is interesting. It was 1991. I remember, I think the World Federation for Mental Health was involved in the formation of them. I don't know if we were organized before they came into being, so I don't recall that there was any dissenting voice while they were being formed or as they were announced or released. And I know that the World Federation for Mental Health thought they were great and when we looked at them, we didn't like them. So that's why we wrote that critique.
Now, very happily the principles are now redundant because the Convention on the Rights of Persons with Disabilities has overtaken them.
Kasumi
Yeah. In the WNUSP, if a survivor thinks forced treatment is inherently wrong or sometimes okay?
Mary
This is one of the areas where there have been some differences of opinion in the survivor movement. So, you had the radical people who from the very early days said, forced treatment is always wrong and they came out of some pretty awful hospitals and they had been really badly treated, so they say forced treatment is always wrong. And then you had others who said, "Well, you know, I don't like forced treatment but I think that might have saved my life." Or the other thing the radical people said, "We don't like the drugs or the medical model and we don't like ECT." But then you get some people who say, "Well, you know, I like the drugs," and one or two people who say, "I like ECT." So, this is where the clash was.
Now, I believe that there was a growing voice both within the group of people who call themselves users and survivors and outside it to say that forced treatment is wrong. I believe that compared to 20 or 30 years ago, there are more people who are very worried about forced treatment than there was back then.
Kasumi
Is it because more mental health system was established in more abroad countries or regions? Why the opinion is growing?
Mary
Well, one key thing that has happened is the Convention on the Rights of Persons with Disabilities. It's quite clear that forced treatment doesn't comply with the convention. So that's one thing. You see it's quite interesting because if we had a mental health convention, that would never have got their [Unclear]. But because it was a disability convention and they had to treat all people with disabilities equally and they had the principle of equality with all citizens, they couldn't argue for forced treatment in the convention. It's only when you separate out crazy people from everyone else that people can say force them or forced treatment on them. So, in a way, it was a great protection for our interest to be within a larger group of people with disabilities because you can't say to someone who is blind or in a wheelchair, "We're going to force you - we're going to allow forced treatment." So as long as we were hiding in the blanket, it was very good. We were shrouded, we were only a - and of course there was Tina Minkowitz who was at those meetings. Tina is one of the most difficult characters, but part of the difficulty was a great strength at those meetings because Tina just would not let go, and in English, we say someone is like a dog on a bone, meaning they'll just chew and chew and chew, and they will never let go off that bone. That's what she was like. She did more to protect our interests in that convention than anyone has done before or since because of that simple thing, because in one of the articles, in article 14, it said, "People shall not be deprived of their liberty on the basis of their disability." Now, in an earlier draft, they said ‘solely on the basis of their disability,' which means yes, you could be deprived of your liberty on the basis of disability if there were other factors involved. And that would have just driven ? that would have just meant mental health legislation was okay. Because in mental health legislation, you have the psychiatric disability, and then you may be a danger to yourself or to others and you may have lost your confidence. But Tina said, "No, it has to be on the basis of disability." So if disability is part of the reason, you still can't do it. It doesn't matter how many other reasons you pile up. You can't.
Then, the other key article was legal capacity, which is article 12. And she was incredibly vocal about the ? and she did more to help that cause than anyone really through being a dog on a bone.
So, the convention I think has forced people to review their attitudes and provides a framework for people to be able to see that actually it is discrimination to have a law for crazy people that uses different threshold or different standard for when you force treatment on someone or when you do things without a person's consent to the legislative framework that covers everyone else. So, now people are seeing there's a problem of this, whereas beforehand, many people didn't see it.
Kasumi
After the convention was adapted, more opinions were growing to prohibit the forced treatment?
Mary
Yes. But at the same time, in western countries, there is more and more forced treatment. So now, this is what is happening because there is a lot of what we call risk management. So, the psychiatrists are in a difficult position because even the ones that want to treat people voluntarily, they say, "If I don't force that person to have treatment and then they go and do something, then I get the blame and I might lose my job." So, what happens is that they end up forcing a lot of people just in case something goes wrong. So they might put 200 people under Mental Health Act, and it might prevent one suicide. They will have to put apparently 10,000 people under the Mental Health Act to prevent one homicide. So they're using a very ? and this is because they can't predict because they're humans. So, it is a very crude tool for risk management but they use it because it's just easier to lop people up and force them to take medication than actually having good relationship with them and then get them to manage their own risks.
So, this is depressing because there is talk about discrimination in the Mental Health Act, but there is also more use of the Mental Health Act in the western countries. Another reason for the greater use of force is that more and more countries in the West have rules that say, "We can force people to take medication outside of the hospital and the community." So there's lots of people on community orders. Their numbers are growing a lot, in some countries.
Do you have community treatment orders in Japan?
Kasumi
No, but there are lot of institutions.
Mary
Yes, I know.
Kasumi
So, how about time?
Mary
Yeah, do you want to ? just stop when you feel like it and we could come back.
Mary
Right.
Kasumi
Disability movement, in ENUSP's report of the general assembly of then, did they say someone don't want to have a relation with disability movement.
Mary
Did they say they don't want to have a relationship?
Kasumi
Yes.
Mary
I don't ? when was that version?
Kasumi
In 1994.
Mary
1994. I don't remember anyone saying we shouldn't have a relationship with the disability movement. What I have heard is that it is a good idea to have a relationship with the disability movement because many of our issues are quite common. But it is true that the disability movement don't have the same problem with forced treatment. And also, some people may be reluctant to have a relationship with the disability movement because they think the disability movement stigmatizes people with mental distress. So, that might be a reason why that came up. But I can't think of any other reason why you would think it was a bad idea.
Kasumi
WNUSP became the monitoring member of the United Nations Standards…
Mary
Yeah.
Kasumi
Did WNUSP encourage or want to become a monitoring member or they chose, United Nations members chose WNUSP to be…?
Mary
Yeah, how did that happen? Well, I became ? look I can't remember how WNUSP became represented on that monitoring committee. I know that the first meeting that I went on to it for - I think it was in the monitoring committee, I think in probably January 1995, and I was on that committee until September 2001. WNUSP was an obvious place to go to find people who represented psychosocial disability, because there was the World Blind Foundation, the World Deaf Foundation, there was the people with intellectual disability, the people with physical disability, and clearly psychosocial disability was included in the definition. So, they had a problem and they needed someone from psychosocial disability to speak to. Because the monitoring committee was made up of disabled persons organizations, it wasn't made up of governments or service providers, but made up with organizations run by disabled people, and they had to be international organizations, so at that point, there was really only the world network that sort of was claiming to try and have to try and advocate for people's interest in every country, not just North America or whatever, so, yeah.
Kasumi
Yeah. Monitoring member became an international disability alliance in 1999. This United Nations or someone encouraged to become an international disability alliance?
Mary
Yeah. Look I've forgotten how the international disability alliance came about, and neither it was ? you know, because you get a group of international DPOs or Disability Business Organizations together and whether they ? obviously they developed the alliance before 2001. Now, one of the big discussions in the monitoring panel was while the standard rules are okay but really we need a convention, and it was a lot of lobbying going on for a convention, and it may be that the international disability alliance would set up to try and get momentum going for a convention. I don't know that but I suspect that's why they developed.
So, I remember we had discussions in 2001 about, "A convention is a long, long way away" and then suddenly it was happen, and I think if I remember rightly, the Mexicans were very supportive and they did what you do at the United Nations to get it on the agenda, and I think there was maybe some support from China because one of the leaders in the communist party had a son with a disability and he was very active. But I think it was the Mexicans and what the connection was or why they in particular wanted to see this convention or what the connection was with the Special Repertoire who was the Special Repertoire on Disability or the International Disability Alliance, I don't know how that all worked out, but I do know that everyone was very surprised at how quickly it was decided by, I guess, the general assembly that it would be a disability convention that people thought, "Wow, we thought it was going to take 10 or 20 years."
Kasumi
I want to ask you about culture of madness.
Mary
Culture of madness? Yes.
Kasumi
Yeah, do you think culture of madness needs not only neutral but also positive to madness?
Mary
Yeah. Well, I think madness is one of those parts of the human condition that can be negative, positive, or neutral. So, I wouldn't like to suggest that when I talked about culture of madness that madness is easy or there aren't some things about madness that are disruptive and difficult, there are. But, what I wanted to convey is that madness, there can be some positive things that come out of this experience. One is a new understanding of life while another one might be compassion for people. There are a whole range of things that ? one might be that I have learned to live through a very difficult time, and even more than that, there may be some lessons in the experience of madness itself that are useful for me, and one way of understanding madness is spiritual emergency and so, in the spiritual emergency, your whole world, in a way madness destroys the world as you know it, but then you build it up again and you build up a different world, or a different mental understanding and actually it might be a better one.
So, I write about a culture of madness in Stopovers. So, if you accept that madness is very challenging, very difficult and very disruptive but there can be some positive things that come out of it. This is important because it means that people who can stop discriminating against people who are mad, they can fear it less because this is a full human experience that people can emerge from. It doesn't destroy people forever, that it gives madness a bit more status in the world. It's not just a tragic thing that happens to a person and it destroys them and they never come back from it. So, there are a lot of reasons why having a culture of madness is not just good for the people have gone through that experience but it shows madness in a different light to the community and to the professionals.
So, I think it's important that we don't want to get romantic, if you know what I mean, about madness but at the same time we want to show that there are positive things that can come out of that for people. That means we can write novels or songs or do study or we can tell our stories to people much more easily.
Kasumi
Was your same opinion or idea in WNUSP?
Mary
The discussion was more about probably human rights than a culture of madness. I think most people would have some sympathy for that way of thinking, but the conservative people might think, oh, I don't like that word madness, or they might think it's an illness and we just need to treat it with drugs. But most people I think would be quite sympathetic to the kind of ideas behind. They would understand them and agree with them. But it wasn't really what we discussed much.
Kasumi
In 2001 general assembly, WNUSP said they support Mad Pride Movement. Mad Pride Movement and WNUSP have strong relation or not?
Mary
I haven't been involved since ? where was the assembly in 2001, was it Vancouver?
Kasumi
Yeah.
Mary
Yeah, I was there, and at Vancouver they had brought out a statement against forced treatment. Well, yes, for Mad Pride, as they stand for many other things that I was talking about in the culture of madness, and Mad Pride is a loose kind of affiliation of more the radical-ended people who really want to show that there's a positive aspect to madness. And I don't remember any discussion about Mad Pride, but what happened with WNUSP is that it increasingly became an organization that focused on forced treatment. So, in the beginning, I think the discussions were more broader. There were broader discussions, and because of the interests of the people who were active in it, Tina Minkowitz, they really focused a lot on forced treatment. I think maybe the start of that was focused a lot on forced treatment.
Kasumi
You have many members in the WNUSP who participated in Mad Pride event?
Mary
Yes, I think probably there were quite a few. I mean Mad Pride really was a strong Mad Pride movement in England, London, Toronto I think. I think they picked it up in Ghana and Mad Pride in British Columbia I think. So, it was dotted around the world. The main person of Mad Pride in London was a man called Pete Shaughnessy. He killed himself, so I think it sort of collapse after that. And that was probably 10 or 15 years ago. So, I'm not sure how current the Mad Pride Movement is. I don't know, I think it might have been stronger 15 years ago than it is now.
Kasumi
All my questions I prepared in advance what I have questions to ask. Well, thank you.
Mary
Do you have any other questions?
Kasumi
No.
Mary
No? They've all been answered?
Kasumi
Yes, thank you.
Mary
It's a pleasure. So next week, maybe another time we can talk about the book.
Kasumi
Yes, and beginning to record and I may have another question.
Mary
Yeah, okay. That's great. Thank you very much. And maybe we'll make a time next weekend? Would that be good?