*
This interview was conducted in Mary's home in Worcester, UK. Mary was kindly looking things up a lot.
*
Kasumi Ito
I would like to know about your contribution of the ENUSP. I think I saw your name on the first report of the ENUSP, so I think you are involved in ENUSP from the establishment.
Mary Nettle
Not quite, not at the very beginning but near the beginning. There were some English people who were involved. One of them was the chair of the network.
Kasumi Ito
From England?
Mary Nettle
She was involved before me. The Queen gave her an honour and everything.
Kasumi Ito
From UK?
Mary Nettle
Yes from UK as well. And also a lady from Newcastle in the Northeast of England called ? and another woman. Anyway how I got involved was when *** asked me to a meeting in Denmark in Kolding,
Kasumi Ito
In 1997?
Mary Nettle
Perhaps. It was to do with disability. It was a workshop and it was around, "Ourpeople with mental health problems disabled?" There is a report. I don't know quite where it is got to. But anyway, there was a written report on this. And it was very controversial because a lot of people felt that we are not disabled. And I was trying to get across the fact of the social model of disability where you are not disabled by yourself or your illness but by how society looks at your illness.
Kasumi Ito
Yes, yes.
Mary Nettle
And at that time, whenever it was, that was very new thinking in mental health. It had never been considered a disability before. But I was aware of the work of *** in particular and the United Nations, the beginning of developing a United Nations Convention. And they were very instrumental in getting what they called psychosocial disability on the agenda which I think is the most significant thing that has happened. And that was the world network that did that but the European network was part of the World network, so we got the stuff.
Kasumi Ito
I think it's unique in UK that the mental health is not a disability.
Mary Nettle
No it's not. Everywhere.
Kasumi Ito
Everywhere.
Mary Nettle
Everywhere. It's not. And I have done two pieces of research about this.
Kasumi Ito
Yes. Maybe I read that.
Mary Nettle
Social model of madness and distress
Kasumi Ito
Yes, yes. I know that. Yes, yes.
Mary Nettle
That is his thing. And we did two pieces of work to try and get people to explain why they didn't like it, or wanted to do it. And it didn't work. People just don't like the idea. They would rather have psychosocial disability than being labeled as having people subject to madness and distress or something like that.
Kasumi Ito
Why people didn't like that?
Mary Nettle
They didn't like ? they were afraid of labeling themselves as mad. They didn't like that at all. They could relate, they could be distressed, but again that sounded as though they were not able to look after themselves. And most people have bought into; I think that's the word, the recovery model in mental health. But that's rather there's nowhere near as implemented, taken up in the UK as it should be. It's sort of is, you know the phrase ‘flavour of the month', i.e. lots of money, lots of time and attention and then where is it gone, where is it now?
Kasumi Ito
When people start to become a psychosocial disability? When did the people started to recognize the idea of disability is useful for them?
Mary Nettle
They haven't really, even now. We as people, leaders in the movement, whenever we get it, we know what it's about. But your average person doesn't know anything about it at all.
Kasumi Ito
Okay, okay, okay. So why did the ENUSP get involved in CRPD drafting even if they did not like disability?
Mary Nettle
That's interesting, because some people within ENUSP could see the bigger picture, okay, and how there was strength in linking with other disabilities, The International Disability Alliance, for us the European Disability Forum.
Kasumi Ito
Yes. I know, yes.
Mary Nettle
And that was a way of getting our voice heard. It was mainly I think what's known as a pragmatic decision; i.e., we may want to have our own empire but we will think without the help of other people, if you know what I mean.
And it's around education, we as the European Network needed to educate members or other user/survivors as much as the rest of the world.
Kasumi Ito
Okay. You are involved in ENUSP from beginning of the 1990s.
Mary Nettle
Almost yeah, not quite beginning as I said before. That was my first encounter with the European movement was not in England, it was in Denmark.
Kasumi Ito
Yes. When did you get involved in UK movement?
Mary Nettle
That's another long story, because I became involved with an organization called Survivors Speak Out.
Kasumi Ito
Yes, yes. And also you are member of the Mindlink.
Mary Nettle
Yeah. Both Survivors Speak Out and Mindlink are gone, disappeared, they don't exist anymore.
Kasumi Ito
Really? I didn't know that.
Mary Nettle
Mindlink was abolished, but that was the most important thing for me because I was the chair of Mindlink and it was a separate organization within Mind, the National Mental Health Charity. And Mind decided that having Mindlink was stigmatizing, was discriminating because there was a special place for users/survivors.
Kasumi Ito
Yes.
Mary Nettle
And that it would be better if we all became members of Mind, okay? We didn't have a separate space anymore. Partly I think because they couldn't afford it but they didn't say that. They said it was because we didn't need a special space. We were all members of Mind. And then they said we would have to pay to be a member of Mind. To pay. Give money, to pay a membership fee, a subscription.
Kasumi Ito
Yes. From the people to Mind.
Mary Nettle
Yeah. So, as you can imagine, that went down very well. And the value of Mindlink had not been recognized by Mind at all, really. It was recognized but then things changed. And people changed.
Kasumi Ito
When did Mindlink abolish?
Mary Nettle
Oh quite some time ago, long time.
Kasumi Ito
Long time.
Mary Nettle
Yeah, can't remember.
Kasumi Ito
But I think Mindlink was established 1990, no.
Mary Nettle
Yeah about 1990s. And then it was abolished in 2005, say. It was therefore 10-15 years. And it was very good to have an organization that we could then be members of ENUSP because that's a membership organization.
Kasumi Ito
Yes.
Mary Nettle
But individuals as well. And the same with all the other. If you needed to be a member of an organization, Mindlink was a good one to be a part of. And Mindlink sponsored us to go to Vejle which was another Danish event.
Kasumi Ito
Yes. Vejle, yes. 2000, yes 2001.
Mary Nettle
My CV has all this stuff. Do you have a copy of my CV? You probably don't. I don't think I have sent it to you. That would give you all the stuff, all about dates and things because I can't keep things in my head.
I just sent it to somebody but I can't…
Kasumi Ito
The General Assembly in Vejle was 2004 which…
Mary Nettle
Right. That's where I became chair.
Kasumi Ito
Yes, yes.
Mary Nettle
I didn't know I was going to be chair by the way. That is how these things happen. This is very strange.
I have sent something that should be there. That's very silly. This is my phone. It doesn't really work that well. I will remember to send you the CV and I will give you lots of these dates I think that you would like. And it tells you more about myself as well. Oh there you go. I can't read it. When does it say about Mindlink? That's publications. Mindlink, yes that was really important, Department of Mental Health Taskforce user group. That was a big push from the government of the day, the conservative government to improve mental health services. They spent tons of money and paid us all to do things and go places.
The Value Plus Project, that was published in 2009.
Kasumi Ito
Okay. You are involved in Mindlink from…
Mary Nettle
From 1996 to 2001 I was chair of Mindlink, which had over 1000 members in England and Wales and absorbed into Mind in 2012. I will send you this because there are lots of dates here which might be useful.
Kasumi Ito
Yeah please send me.
Mary Nettle
Hopefully I haven't got any links here but you can put it into Google or whatever. What I want to do now is I want to ? whether I will send it to you now? Let's see what I can do. To share what I need to do? New message to. Now, it comes up in Japanese, so is it IT?
Kasumi Ito
Yes ITO…
Mary Nettle
That's right because I have to remember that because this is not your name. The Japanese characters, is that your name?
Kasumi Ito
Yes.
Mary Nettle
Hopefully this will be it. That's it, good. Fine, I will just send. This message is empty. Hopefully you will get it shortly. I should have sent that to you before. That would have been useful for you.
Kasumi Ito
Thank you.
Mary Nettle
Has it arrived?
Kasumi Ito
Yes.
Mary Nettle
Good.
Kasumi Ito
Thank you. Thank you so much. It's very informative.
Mary Nettle
Yeah. I think it's got lots of information.
Kasumi Ito
You are also member of the Survivors Speak Out.
Mary Nettle
I was yeah, but that's finished now as well.
Kasumi Ito
Why and when?
Mary Nettle
Why and when? Put on the internet and see what it says because it was no money. No money. And Survivors Speak Out was very important to me. It was very important. I was a very passive patient for two decades in my 20s and 30s. And when I was at the end of my 30s, I was aged 39 something; I was in a day center, a patient in a day center.
Kasumi Ito
Yes, yes.
Mary Nettle
And some worker came into the day center and said you might be interested in this. And it was a letter from Survivors Speak Out talking about a 2-day workshop away in Edale in Derbyshire which was a in a youth hostel and it was very good. It was very encouraging. And so I rang the people in Bristol who were going and they said I could come with them. And it was amazing. It was completely life-changing. It was called, I often heard it referred to as a Paulian moment,. St. Paul on the road to Damascashad a conversion. It was Because I had never met anybody who was radical about their mental health, I had never heard of the word survivor, I didn't. There were people there who didn't want to take medication. They thought medication was bad for you. All the things that I now know, quite often I hear people say, but it was very, very new to me, very radical At Edale was a survivorpaid by Mind to start what was called the Mind Consumer Network at that time. It became Mindlink. She said, come on, you can be elected from the Southwest. I said I cannot be elected the Southwest of England. I said I cannot be elected. Well no, but we want you to come so come anyway.
There was a democratic structure for Mindlink and it had the support of Mind, therefore it was funded. And when it started, Mind was based in Harley Street just off Oxford Circus, which was the center of London. And so I used to come up for meetings and then eventually I got elected chair. And Mind supported us to go to their annual conferences, they don't do them anymore, which were very, very interesting. We were speakers. We were on the platform. It was very remarkable. But I would have never got to that place without Survivors Speak Out in the first place.
Kasumi Ito
When you met Survivors Speak Out, you were in the day center.
Mary Nettle
Yeah.
Kasumi Ito
Then you left at the day center. Did you leave?
Mary Nettle
Oh yeah. I met other people who were self-employed, worked for themselves as consultants, talking about mental health issues, and doing research but not academic research ? asking people for their opinions.
Kasumi Ito
Yes.
Mary Nettle
Because when I was well, I worked in marketing research, which says in the CV. So I knew about research, asking people what they thought about products and I was amazed how in the NHS or the health services nobody asked your opinion about what you thought of the service. And the wheel was beginning to come towards paying people, valuing them for their time because this Mental Health Taskforce I told you about. In England the movement was beginning to ? so its users were experts by experience and had value. I did all sorts of things.
Kasumi Ito
Yes.
Mary Nettle
Mindlink was a member of the European network. That's again a connection. But it's very difficult to work out how things started.
Kasumi Ito
Then you became the chair of the ENUSP, so you were chair of the Mindlink from 1996 to 2001.
Mary Nettle
2011 I think. Because I think I just stopped. I couldn't be chair of ENUSP and chair of Mindlink. It was two. You can only do one thing at a time.
It might be worth mentioning Mental Health Europe at this time because that was very influential for me as well. And that went on to support. I said, lots of people didn't like Mental Health Europe because they thought it was a medical model organization and then I got to meet the people and talk to them and realized that actually they wanted to get away from the medical model and that ENUSP could help them do that by being involved with them. And also, we could have some money from them to do seminars and stuff like that. But I worked for them as an evaluator as well. I evaluated their user involvement for 3 years.
I am quite a fan of Mental Health Europe. I cannot be on the board because I am an individual member. The only service user network left in England is NSUN, National User Survivor Network. And that's now on a shoestring as well. But they have a weekly bulletin. Have you seen thiswhich is very interesting?
It is a virtual organization really. I will send you a copy of it if I have got it here. I have been getting many of these from the ENUSP desk about some passing on stuff from European Disability Forum. They haven't done that for ages so it's really good to see that they are actually picking step up with European Disability Forum. I was trying to find the NSUN Bulletin. That should be easy. That comes every week.
Anyway, so yes NSUN and they had money to have general assemblies, what we call annual general meetings.
Kasumi Ito
Of the ENUSP?
Mary Nettle
No, of themselves. They are the only organization in England left and they are affiliated. They are a member of ENUSP. I don't know whether they still are but they were.
Kasumi Ito
Yes. Okay. I think there is also UKAN.
Mary Nettle
That's gone. No. That doesn't exist anymore.
Kasumi Ito
When are they, NSUN?
Mary Nettle
National Survivor User Network
Kasumi Ito
When was this established?
Mary Nettle
NSUN has being going about 10 years. National Survivor User Network.
And it covers England only but this bulletin gives all sorts of information. Doesn't talk much about developments wider than England. It doesn't talk much about Europe or the world. I will send it to you.
Kasumi Ito
You are member of the NSUN.
Mary Nettle
Yeah, an individual member but because I am an individual member of Mental Health Europe ? today I am an individual member of Mental Health Europe. I am an individual member of ENUSP. I am an individual member of NSUN which is National Survivor User Network.
Kasumi Ito
Did you involve in CRPD drafting?
Mary Nettle
No. Not really. It was all very complicated and it was happening in New York. If it had been in London I would have. But it was too far, too expensive as an individual because I was only an individual. I no longer had the backing ? like when I was involved with Mental Health Europe, Mindlink was well funded so I could get expenses to go to things and do things. But I would be there as an individual. And you had to be part of an organization to go. I attended meetings where I could. And also we had this set on that piece of paper. We went to DresdenGermany There were a lot of Americans there.
Kasumi Ito
What is your main work of the ENUSP?
Mary Nettle
To exist. That's it. The main work is it is a member, it is what this European region of the world network. And they struggle to get money together to do things.
Kasumi Ito
Yes.
Mary Nettle
At the moment *** is working with people at the European Disability Forum just to encourage people to do things. But I don't know who. She sends me these things. But is she sending them to 100, 200 people or to one person? I don't know because I am not involved. There hasn't been a newsletter from ENUSP for a long time. We used to do one but it was very hard work to get it together. And it fell off the radar. We haven't done one. The Facebook page hasn't been updated because it all relies on volunteers. We don't have any paid workers. When ENUSP started, it had a paid coordinator from the Dutch Clientenbond.
Kasumi Ito
Yes. The money from Dutch was end in?
Mary Nettle
I don't know. The Dutch government while it was funding the Clientenbond Movement and they fell out ? there were two different patient council organizations and they wanted to have just one and they said, we funded the European Network for 3-4 years. I don't know how many years. And now another country in Europe has to take it on. Quite right, really, it shouldn't just be the Dutch who did it, the Netherlands. Though the office is in Copenhagen, I think it's just an address. I don't think there is any ? because it used to be part of a Dutch user organization called LAP. And they had lots of money. And so they supported. ENUSP had the office. But then LAP said somebody else must do this. We can't keep doing this forever.
Kasumi Ito
Okay. The General Assembly 2004 was funded by LAP, I think.
Mary Nettle
Yes it was. Or rather it was funded by the Danish government but LAP got the money on behalf of ? they funded LAP to do it for ENUSP.
Kasumi Ito
Yes. Then they said they cannot do that.
Mary Nettle
I don't think so. They might still be giving some money. I don't know. The British government hasn't ever wanted to fund any user organizations ever. The Scottish government is better, Scotland. It's interesting piece of work to see why Scotland is different to England. It is quite often, but in mental health particularly. It is a very good organization. I only know through Mental Health Europe called Penumbra, and they support user involvement and things. And they did a seminar for ENUSP just recently. I wasn't invited or rather I could have gone if I paid for myself. They had a few, a limited number of paid places.
I did go to Copenhagen, well to Denmark, for the last general assembly but I didn't take much part in it. I had a good friend who lived in Copenhagen and it was near Copenhagen. What was the place called?
Kasumi Ito
When was the General Assembly in Copenhagen?
Mary Nettle
It wasn't in Copenhagen, it was just nearby.
Kasumi Ito
When?
Mary Nettle
That would have been about 4 years, about 5 years ago, that sort of time. They managed to have one. I can't remember much.
Kasumi Ito
Okay. Yes. Did you have any relationship with World Network?
Mary Nettle
No. ENUSP was a member of the World Network, so when I was chair of the World Network I think Tina was probably chair as well of the World Network.
Kasumi Ito
Yes, yes.
Mary Nettle
I don't know who the chair of the World Network is now.
Kasumi Ito
At the beginning of 2000 there was draft in the CRPD. I think that time the WNUSP trying to involve the member from Africa and Asia and Latin America.
*** said European members contribute to get involved from the Africa members from Africa, to find member from Africa.
Mary Nettle
Well I know WNUSP had an annual general assembly in Uganda.
Kasumi Ito
Yes, yes.
Mary Nettle
Was it Kampala?
Kasumi Ito
Yes, 2009.
Mary Nettle
Yeah. And that was the last time they have had a conference that I am aware of.
Kasumi Ito
Yes.
Mary Nettle
I didn't go but several people I know did go.
Kasumi Ito
From where?
Mary Nettle
From London. He went to the general assembly. But he doesn't seem to have done much about it and I think he went as an ENUSP person. But he didn't really give a report or he is not that sort of person. And there was another guy who also went, who has sort of disappeared as well. Two men from England went. I don't know who else went from ENUSP. I am not sure. It was a long way. I don't know how they managed to go, whether it was their own money or they got money from somewhere else.
Kasumi Ito
You involved in the ENUSP in 1990s. Then why did you elected as a chair of the ENUSP and as an organization?
Mary Nettle
Because nobody else wanted to do it. I didn't campaign, I didn't particularly want to do it. But I was persuaded to do it. They said I would be good at doing it. They flattered me to do it, to say I will do it. That's what it was. What I can remember, I didn't want to do it to get power and change the world and that sort of thing at all. I just wanted the organization to continue and it has always been very on the edge of financial and everything else. It was never straightforward so I thought well, I might as well try and use the influence I had in the UK from my self-employment job and my links with Mindlink and Survivors Speak Out try and do some. And I think I didn't do too bad a job really but I don't know. Other people will have to say.
Kasumi Ito
Yes. Mindlink was merged with Mind again.
Mary Nettle
Mindlink disappeared because Mind didn't want to fund it anymore, didn't want to do it anymore.
Kasumi Ito
What about Survivors Speak Out? No money.
Mary Nettle
That finished about the same time. It limped along for a bit longer but when NSUN came, they had more of a profile, more money and therefore Survivor sort of disappeared. I think NSUN took up but in a different way, obviously.
Kasumi Ito
Okay, okay.
Mary Nettle
You probably don't know about Survivor's history. Actually you should know about it, it has a bit about international and it's quite complicated. *** is a lecturer. He is a survivor himself and a lecturer and he has made a very dedicated academic website which goes on for pages and pages and pages. It's just he tries to record everything that has ever happened and it's called Survivor's History. That certainly will be useful for you to have a look at.
Kasumi Ito
Yes. History of the UK.
Mary Nettle
It is based in UK and it's mainly about the UK but it does have some talks about ? it's very much based date wise on a timeline. I haven't looked at it for ages. I am sure it's still there. Wonder if I can see. It's interesting how the word ‘Survivors' has changed because it used to be Mental Health Survivors but now it's Survivors of Sexual Abuse.
Kasumi Ito
Yes.
Mary Nettle
Survivors of the Holocaust.
Kasumi Ito
Yes.
Mary Nettle
Alright, here we go. This is Wikipedia. The Psychiatric Survivors Movement, more broadly peer/consumer/survivor ex-patient is a diverse association of individuals who rose out of the civil rights movement. Interesting this, isn't it? This is very American. Always America does dominate the internet world, doesn't it? It's not completely...it's not UK based. So anyway, where are we?
Interesting. Victim survivor used in psychiatry but now I just think of my mental health issues. You could spend always on this stuff, couldn't you? This is just ridiculous. You have to be so careful with your finger on these things, don't you? This is a National Survivor User Network, not the bulletin but it will give you more stuff. So I have just send you that. And I shall now try to find Survivor history, which is what I was looking for. But there is a lot more academic stuff about psychiatry than ever used to be, from a service user perspective.
Kasumi Ito
Is it this one?
Mary Nettle
Oh yeah. That's the one. You can see. Is that the right one? I don't think this is the right one. No. I think this is from ? what's this here? A fan site, it's the CBS.
Kasumi Ito
CBS.
Mary Nettle
Yeah. Canadian Broadcasting System. It's about the TV series called Survivor.
Kasumi Ito
Oh really?
Mary Nettle
It's not the right one. It's not that one. It's called studymore.org.uk.
Kasumi Ito
Yes, yes.
Mary Nettle
Have you found that?
Mary Nettle
There is so much here because absolutely everything you could think of ?like he says, the Edale Charter. That's the place. When I said I went to Edale, they came up with a Charter.
Period 1985, when I was involved most as a national. Oh then it goes way, way back to the people in the asylums in the 18th century. Mind in Camden. Think 1985 to 1995 was a pioneering phase. Mindlink, oh yeah.
All sorts of stuff. No I think you can really bog down in this. Have you found it? Have you found it on your thing?
Kasumi Ito
Yeah I found the 1994 and 1995.
Mary Nettle
Study more.
Kasumi Ito
Yes. When you got involved in the Survivors Speak Out, did you have a job?
Mary Nettle
No. I was too new to everything. That's why when I went into Mindlink but I didn't have any job. I was just a member.
Kasumi Ito
Member of the Mindlink.
Mary Nettle
Yeah, until I got elected chair few years later. Oh dear. Perhaps I should answer this.
Kasumi Ito
Okay. The chair of Mindlink was paid work?
Mary Nettle
No.
Kasumi Ito
Voluntary.
Mary Nettle
Voluntary. The whole Mindlink was voluntary. In fact all these organizations are voluntary.
Kasumi Ito
Voluntary. Did you have work when you were chair of the Mindlink?
Mary Nettle
Yeah. I was self-employed. I worked for myself and I was doing various bits and pieces which is in the CV. You can see. But I have never earned very much money. It's always been I have been supported by my family.
Kasumi Ito
Your family is supportive to your work.
Mary Nettle
Yeah. They are supportive. They think it is a bit odd but they are supportive. They are not fans. They are not sort of encouraging me to do more stuff. They think I am doing too much. But they are supportive.
Kasumi Ito
Do you have a sister or brother?
Mary Nettle
I do yeah. One of each. They don't live too far away. I see them quite often. My parents are dead. And I was married but my husband died. But again, in the CV says that so you can tell.
Kasumi Ito
Yes. Okay, okay. You worked chair as a volunteer. Also ENUSP chair was a volunteer.
Mary Nettle
Yeah. All voluntary. You don't have paid work in these sorts of user/survivor organizations at all.
Kasumi Ito
Yes I think. I would like to know the discussion about the disability and the mental health program more. The psychiatrist or some mental health staff think that mental health program is a psychosocial disability, one of the disabilities.
Mary Nettle
No they don't.
Kasumi Ito
No they don't.
Mary Nettle
No, they do not. They think it is schizophrenia. They think it is bipolar. They think it is a mental illness labeled. They don't think of it as a disability. They know that you can be disabled by it but they don't think of it that way. They think of it as symptoms and challenges. If I said to my psychiatrist ? I don't have one now, but if I said to my psychiatrist, would you consider me disabled? He would say no. Because I was walking, talking, didn't need a wheelchair. Psychiatry has got the same attitude as the public generally that wheelchair ? if you are disabled, you have to have access needs. And access needs don't include things like quiet spaces which people with psychosocial needs. It's different.
Kasumi Ito
Who have found the mental health problem referred to as a disability is useful?
Mary Nettle
Even now most people wouldn't. I mean it's still ? most people never heard of the UN CRPD, the United Nations Convention of the Rights of People with Disabilities. Let alone the fact that it might apply to them. No they have never heard of it. It's the education about it. The information about is very, very bad. And they don't realize that it says there should be no forced treatment, which is really important to people but because they don't believe it.
And British government goes along with that and says, well of course that doesn't apply to you anyway because you are patients and you are detained under the Mental Health Act, therefore we can do what we like with you. You are protected by the Mental Health Act which is nonsense. That is under review by the way at the moment but I don't think it's going to make any difference.
It's not even considering how the Mental Health Act is compatible with the UN CRPD, won't even have that discussion or debate because we are patients, we don't know our own mind. We can be in crisis and not at all…
Kasumi Ito
Okay. How about the person with disability, other disability movement people think ? the person with other disability think that mental health is a disability?
Mary Nettle
No. No I don't think they do particularly. Again, if you think the people who have a physical disability, in their head they know that they have psychological issues due to their disability but because of the stigma and the discrimination they don't think they have a mental health problem because that means they are ill and unable to cope and they are coping very well with their physical disability with the right equipment and place to live and access and all that sort of thing, level access.
Even in the disability world if you look at the International Disability Alliance ? you know that the World Network is part of the International ? they don't really say much about mental health in that. I mean they don't ? because to me it is very logical, if you have had a trauma which means that you are now a wheelchair user, it must have a mental health component because it must have been really difficult for that to happen. But that is ignored and people are encouraged to carry on and not think about it. I just think it's really difficult.
Kasumi Ito
When the ENUSP became a member of the European Disability Forum, is there any obligation, any disagreement to become a member of the European…
Mary Nettle
No. I can't because it was that further forward and to be honest I can't remember. I am not sure. I think when we had that workshop in Kolding a long time ago we had worked out that if it helped us to be acknowledged as disabled then we could do it. I think that was after a lot of controversy. I think that was the end conclusion. It was again pragmatic, if you remember that famous word.
Kasumi Ito
Yes.
Mary Nettle
I think that that's how that came about. The European Disability Forum had great difficulty and each country in the EU had to have a National Disablity Council. And the UK couldn't do it. It didn't work. I went to several meetings to try and make sure Mental Health was included and they couldn't even agree amongst themselves what to do with this funny European. Because again, it was when we were a bit skeptical about Europe, even then that was some time ago. It might be interesting to see the history of the European Disability Forum.
Kasumi Ito
Yes.
Mary Nettle
Because I went to meetings and again people thought I was just going on a jolly because they were paying for me to go to Poland or where they have a meeting every year or sooner. I was never on the board of the EDF. I was just a representative of a member organization, which at that time was ENUSP.
As I said, I think people thought I was just going for a jolly to Europe. And this is always the trouble. If you have opportunities to spread the word, people think you are taking advantage. I was on the Disabled Women's Committee of the European Disability Forum and as a result I was asked to speak at a big meeting in Spain about women with disability and psychosocial disability and how people with mental health problems, women and girls with mental health problems were just as likely to be subject to abuse and violence as anybody else and therefore should be included with the protection of disability. That was a big thing.
We had on *** group within EDF, we had myself with psychosocial, we had a little person, tiny, dwarf is the horrible word, who was an amazing woman. Always remember she carried a stick with her because when she got in a lift she couldn't touch the button, so she had to push the button with a stick. It's simple things like that. She was lovely. She was from Finland. She had managed to get women with all different impairments, that's the word impairments. And I think that the mental illness label is an impairment.
Kasumi Ito
I read that some people with psychosocial disability did not like impairment.
Mary Nettle
No, because they think they are perfect. But the thing is again it's back to the social model. It's the social model that makes you ? they force you to take medication against your will. How can that be not an impairment to your way of life, your work-life balance and the rest of it?
But no, nobody likes the word and people in wheelchairs don't like the word impairment either because it implies they are not complete. They are not whole. But it's related to what the medical model says as opposed to the social model. We got to keep those two Around. And in Mental Health the medical model is dominant by a long way as we have already said.