When

Tuesday 27th March, 2012: 4:15am - 5:15am

Where

Blue Room

Speaker

Session Summary

Johnny talks about the Independent living movement from its birth to present day and beyond. He talks about core philosophy, how it has developed and its future. He talks about ADAPT in the US and the UK’s Direct Action Network’s struggle for IL services and their relative success in “Freeing our people” from institutions and compares British and US policies and practice. He talks about his concerns for the future and the principle of consumer control.

 

Transcript

JOHNNY CRESCENDO
Sorry about the sound that was a film made quite a while ago. Most of it was about getting people in America out of nursing homes and in community. The people you saw there falling out of the chairs were people who got out of nursing homes and trying to get their friends out. They knew some of the abuse they experienced in institutions and I think that anger and that knowledge of what had been happening to them and what was still happening to many of the friends that were still in institutions made that anger that they were able to in a sense make that film.

I’m here today to talk about Tearing Down the Walls and what that’s about is about the story of independent living movement in both Britain and the USA as much as I know. I’ve only got an hour and it’s a long story. I do want to take questions on this one, I’ll try not to overrun. Can you give me a 10-minute thing, thanks very much.

I think what I can do as a person coming to this country who knows very little about how your system works and I have been trying to find out, I kind of want to thank a few people I have been pestering and talking to about how it is in Australia. I don’t want to make assumptions that they know everything either. I think I will try and tell you what I know.

I think I will start with England. A dear friend of mine and I’ve been saying this a lot lately, a dear friend of mine that’s passed away and only recently, is a friend of mine called Ken Davis. I told this story on the video that Sarah showed but I think it’s a story worth telling again in case you missed it.

Ken Davis was a divorcee and he was in love with a woman called Maggie who lived in an institution run by the Catholic Church. When the nuns and the people found out that Maggie was dating this divorcee they were trying to stop Ken from seeing Maggie again. This was way back in we’re talking 1970’s that this was kind of happening, this love affair. In the end, what happened Ken took Maggie for a day out and didn’t bring her back. He kind of kidnapped her. Maggie was wanting to be with Ken and I think the institution felt they couldn’t get this one back, this girl back and they would just have to write it off as a loss.

In those days there was nothing. It was like you come out of that institution and for Ken and Maggie nothing, no services, nothing. What they did and both of them are very, very, very bright individuals, very, very bright, they run rings around me easily. But what they did was their little journey to getting to a point where they were independent they kind of recorded it in quite academic ways which became what we call 7 Steps to Independent Living or the 7 Action Steps, steps is an unfortunate word if you’re in a wheelchair. 7 Action Steps to Independent Living.  Those 7 Action Steps do form the basis of both what disabled people want and some of the victories we’ve achieved in terms of getting independent living.

The first thing they didn’t have and we will go through the seven, the first thing they didn’t have was information. There was no information out there for disabled people, people with disabilities to tell you where to go and what you could have, what you could do. One of the things that Ken founded first in Britain was the Disability Advice and Information Line, which is a National Disability Advice Information Service, which disabled people, could access. It was like little satellites all around the country and it was tied into a national kind of thing.

Second was that nobody else had done it. You couldn’t go to a person and ask –  where is the best social worker, is this agency any good, what should I do or just have some support. The second thing, the second part of independent living was peer support and advocacy. So getting together and trying to start to talk to each other about what we really want and getting agreements and also just supporting each other really. Just having disabled people being able to support each other.

The third one after peer support and advocacy, was of course housing, somewhere to live. Again this was still is and remains and I think it is in Australia still a big problem about where you can find housing for disabled people to live independently. I think what we’re talking about here is safe…we have a saying in America if you’re on the streets which is affordable, accessible, integrated housing.  What that really means is we don’t want housing tied to services. We want to be able to live where we can. We don’t want people saying to us well we will wipe your backside only if you live here which is what housing type of services means.

Of course when you get your house the next step is the house you get might not be fully accessible. You may need some adaptations into your house, which then needs to be directed by the consumer. The disabled person knows what they need and knows sometimes what they don’t need. I have seen some houses, which have so many gadgets in it the disabled person is going to electrocute themselves. Do you really need all that stuff, really? I think if we were in charge some people would have less and some would have more. Then you get your aids and adaptations and the next thing some disabled people need personal assistance or attended care. I’m not sure what you call it here – a PA to help you with daily tasks and to make sure you know, whatever those daily tasks are that you want to direct that the disabled person needs. That’s personal assistance.

Then the final one that Ken came up with, I think there is a few more we came up with since, but finally after that…at the moment you get out of bed, you’ve gone to the bathroom, you’ve had your breakfast, you’re sitting in the kitchen and you can’t get anywhere because there is no transport. We needed to think of getting accessible public transport. The last one of course to go where (laughter). Now you’re on the bus but everywhere you go is inaccessible. We had to think of accessible environments outside so once we get out of the nursing home and once we’re not in the institutions we can actually go about our daily lives and do what we want.

That sounds obvious, no one is getting confused here. It’s so obvious yet Ken and Maggie were the people who founded that idea and backed it up with the very first independent living centre in Britain and then a whole range of independent centres came about.

Ken was a brilliant guy, brilliant teacher, very quiet spoken, very down to earth. I really do miss his passing.  That is kind of the theory of independent living in Britain.

Then a similar experience, not quite as similar in America, in America you might have heard the story of Ed Roberts. Ed Roberts was a student, quite middle class. In America, that means quite rich compared to England and Australia. He was going to Berkley, his mother and father must have a lot of money to send him to College for 3 years. That costs roughly about a million dollars. He was there and living in the hospital. Ed had polio, he had to use an iron lung, a very big contraption like that, and that was the only place they could find a bed for him.

Other students started to use the same hospital and they thought it would be a really good idea to hire some other students to do some personal assistance for them. From that kind of little group of what they call the rolling quads they began to do actions, they began to demand we do the same independent living services. They have four core services in America. The four core services of independent living centres are peer support, advocacy, information referral and I’m going to forget the other one….I think it’s information and referral and peer support, advocacy, information and referral and peer assistance. Those were the four core things the American model was founded on. They’re slightly different models.

Then there is a third model, which I would like to talk about where in some parts of England, which had, a debate about this and it’s a good debate to have. I have not a side on this. I think Ken’s model of an independent living centre and the American model is fine in some ways but also there is another model, which my hometown Manchester adopted which is where disabled people became kind of the executive and they called it the empowering service delivery model. In an independent living centre its disabled people who are on the board, they run the organisation, they control it. Under the empowerment service delivery model what you do is train social workers to do the job you want them to do or you train the professionals. The case for that one is not all those disabled people want to be social workers, we don’t all want to work in an independent living centre, we may want to work in a library. We may not have enough disabled people who want to do it and have the skills to do it so therefore we better train some non-disabled people to do what we want. That’s kind of the logic behind the empowerment service delivery model. Both have worked. People in Manchester were getting quality services and people in Derbyshire where Ken lived were getting quality services but just delivered in a different way.

That’s the whole theory of it. I think what you need to pull out of that is where are disabled people in the service delivery of developing and implementing independent living centres? That’s the question. That’s the big question and for you people in Australia who are thinking about that, you’ve got to really think about where you really want to be in that picture. Do you want to be social workers running your own centre and running your own services or do you want to train social workers to do it and advocate for that. You really need to be clear what you want before you can go out, fight for it, and demand it.

There is one more thing, hang on. I have to read some of this, it’s a lot and I don’t want to miss any of this out. I come from an organisation in England as well called DAN this is one of our t-shirts for one of our campaigns we did. We’ve been trying to get the candidacy I’ve been talking about put into practice for god how long have we been doing it…we’ve been doing it for about 10 years. America next year it’s it 20 years anniversary. In fact it’s this year, it’s 20 years to the year we’ve been campaigning in America. We’re not there and not there in England yet. We will come back to that later.

What DAN did drawing from everybody’s experience, talking to all the people we want to come up with a set of demands. I think if you have a set of demands whether it’s going to get them tomorrow or get them over the next year or two it’s really important to know where you stand and what you’re really fighting for. We had four demands, it’s kind of nice. Four demands with long paragraphs.

The first demand was no cap on disabled people’s freedom. By that what we mean is we know some disabled people will cost more to live in the community than others but there should be no cap because it will all even itself out. We can’t talk about this in that way, we can’t say well you’re too expensive. Freedom isn’t something you can afford or can’t afford, it’s a right therefore the Government should be thinking about it in those terms. Once they say you’re too disabled to be free we really are going down a slippery slope. It’s an unlimited pot of money but saying yes this person is going to cost a lot, need 24 hour care but this person only needs 2, it’s about getting it right.

The second one was that the services for the person and by that they’ve taught some people about that. What I have heard from the Australian model, it goes something like this – you apply for something you go on a waiting list and then one day you get it. That’s really like whatever you think about, you apply for something go on a waiting list and then you get it. We know what the system is like at the moment, what we’re saying in this one – the services for the person. If that person lives in an institution and it’s costing the Government $100,000 a year to keep them in that institution and that person wants to live within the community well that $100,000 comes with the person and goes into the community. Also, if you’ve been assessed by social workers in Victoria, up the kazoo and they said you can have this amount of service you want to move to Queensland because you’ve got a job, you get it. You just take the money with you and take it to Queensland. We need to have a portability of services. I’m sorry if my geography is bad, maybe we don’t want to go to Queensland, I don’t know. In America they call it money for the person, before the money and that’s always a good idea to look where the money is if you want to know what’s really going on.

The third one was accessible housing for all. We came up with about seven ways in which you can think about a Government could begin to speed about the process of making housing accessible. There is no register of accessible homes there is no requirement for anyone. You have somebody who goes on a list, applies, goes on a list, finally gets the accessible home then dies. Then a non-disabled person buys the home takes out all the aids and adaptations, puts in a few steps because they feel a bit weird and bang there goes the accessible home. It would be really great to have a national register of accessible homes. We also thought we needed to have regulation that said local authorities and builders if they were building homes had to build a quota of accessible homes and units in the society. Not on the hill but if you’re going to build a new street maybe four of the houses would be accessible but they won’t be all together in a courtyard.

We thought people who lived in residential care, in nursing homes could register as homeless and then ask the authority to say I’m homeless, this is not a home, this is an institution and therefore I can claim I’m homeless, I need a house, you have a waiting list, and I am going to be on the waiting list. I am as much on the waiting list as someone who has no house at all. I’m being abused in the nursing home, I have no rights at all in the institution – at least a homeless person can move to the next street, I can’t.

We talked about local authorities setting up some of these databases and becoming part of those sort of things.

The last thing, I thought the most radical thing was to have independent living centres in every area as per capita of population. In a big city, you would have a big IL, in a small city/town you would have a small IL. In a rural community, you might want to figure that differently, you might have a Royal Flying Doctor IL. Those IL’s would be based on the stuff Ken was talking about. They would be based on peer support, they provide information, they provide advocacy in the community, and they provide legal advice. They’d develop disabled peoples sense of culture and identity in pride so disabled people started thinking you can’t push me around. They would also have the powers of inspection in residential homes so they could go into residential homes and really ask people do you want to come out, are you happy here, staff treating you well. Somebody independent coming in, a disabled person asking in a safe environment, in a safe way, which they’re legally entitled to do. That would be the relevant function of an IL.

Some of those things we’ve got and I haven’t got time to go into all the things we’ve got. We certainly haven’t got enough of them. At the moment in both countries all of that is under attack. Over here it seems to be the big issue is the National Disability Insurance Scheme. That’s a really positive thing, you’re asking for something. It’s something else, you’re not defending something. In England and America at the moment the independent living centres are certainly being attacked. Also in Britain benefits and means testing is really coming in and people are being thrown off disability benefits and stuff like that. In both countries, I know we’re out there on the streets and campaigning but not for anything positive, we’re trying to hold on to what we’ve got. I think here the access is slightly more positive. I know there have been lots of problems and issues. I always think you’re stronger when you’re campaigning for something than against something. I don’t know.

It’s good to have visions and it’s good to have a vision about what independent living really looks like.

One more thing I want to throw at you. This is not my speech, this is little bits of research I did. I did a lot of research before I came here to think about how I’m going to approach this and I found this little gem. I can’t remember who wrote this….I know who wrote it, it was Professor Mike Oliver, a big founder of the disability movement in England. He wrote this, he is a Professor of disability studies, and I think it was him and Colleen Bowns. He wrote this, he was really good, this is about where you want to position yourself. I know you have state things, state advocacy and voluntary advocacy and so on. I think this works with both things. If you get too close to the Government, in other words paid by the Government its risk in corporation and you end up carrying out their proposals rather than ours. But to move too far away is to risk marginalisation and eventual demise. To collaborate too eagerly with the organisations for disabled people risks having our agenda’s taken over by them. There is a distinction between an organisation of and an organisation for. Organisations for are run by non-disabled people for us because they’re the experts. Organisations of are run by us. So to collaborate too eagerly by the organisations for, risks having our agendas taken over from them and having them presented both to us and to politicians as theirs. To remain aloof risks appearing unrealistic and or unreasonable and denies possible access to much needed resources.

There is a conundrum there – close to the Government you would probably get resources, probably get to go to meeting. Too far away from Government kind of means you might not get the resources, you may not get the respect, and you may not get the recognition you really need to have. I think that’s a conundrum in every country I have been in where you think an IL should be. Should it be funded by the Government or should it be totally independent, should it be a charity, what should it be? I think you need to think about how that would be.

I think I will take some questions, I have loads of things to say but I would like to see if anyone has any questions, if not I will carry on.

(no questions asked)

When I ask for questions I want to know if people are for it, do they agree with what I’m saying or is it different here? Do you think this is something you can use here or is it just some foreigner talking and this isn’t how it is here? That’s what I’m searching for. Yes, the mic is coming over.

QUESTION
Can you give an example of a campaign that worked and one that didn’t and why?

JOHNNY CRESCENDO
One of the big things that happened in England almost by accident, almost in a blink of an eye was an Act called Care in a Community. This was passed by John Major just before he got sacked, before Labour came in. If you remember that time Thatcher got thrown out, Major had to save the troops. He passed the Disability Discrimination Act and the Care in the Community Act. It’s not always left wing radicals that give us what we need.

Care in the Community in England basically said everyone has the right to live in a community and we are going to divide services for that. I was lucky me and my partner we were doing training in consultancy work then and we trained hundreds and hundreds of social workers to become what they called Care Managers. We were able to train them from a disability point of view. The course was 16 days days it wasn’t a quick hour session. We were with them for 16 days and you had to pass it. It was an accreditation. Other disabled colleagues of ours were also running around the country doing all this.

What that did in a very short space of time, some would argue too short, I don’t, was to close most of the big institutions in the UK. There were casualties. Some people in the mental health system were let out too early, there were some murders, and some people were stabbed in the street. There was outcry’s but the murder rate didn’t go up. If you look at it from a macro point of view it didn’t go up, we didn’t all come out and start killing people. In the end they’ve closed them. I actually grew up right next to the largest mental health institution in Europe. It was a beautiful place it had cricket pitches, tennis court, it was amazing. A beautifully tailored pitch and when we were kids we would jump over the walls to get in. I was always trying to get in so I could play on the cricket pitch or the tennis court. In the spring all the daffodils came out. We were jumping over the wall pinching the daffodils taking them home to my mum. At that time we thought it was a great place but it obviously wasn’t. As I grew up and became aware we saw some of the isolation wards and the chains, the straps, things, which people were tied to. Because of Care in the Community it’s a Tesco. I don’t know if you know what Tesco is, it’s a supermarket chain. What’s your biggest supermarket chain?

ANSWER
Coles.

JOHNNY CRESCENDO.
Yeah, it’s a really big supermarket. It’s gone, it’s been knocked down. That’s what happened it was knocked down. The great thing about that of course is you can’t put us back in there. One of the things that Bob Kafka says from Adapt is that it’s almost like if you build it they will come. In other words if you have a special school or an institution and you need 800 pupils they will find them. They will label you and and suddenly that school will become full. If that school isn’t there and you can only take 100 people they will label you that way. The place will be full.

Another thing I learnt from Bob Kafka was that you think of us as cash cows. Also it’s like an institution is like a hotel, you don’t want cold beds you want warm beds. If you don’t have warm beds you’re not making the money. Our strategy has always been to get cold beds because eventually the way to solve this is to have people choosing not to live there to the point where it becomes economically unviable to keep it as a business, keep it running. It becomes very expensive for the state to run.

Let’s get some passion into this because I’m talking quite dryly at the moment. We did an action in Nashville a few years ago. Sunday is usually a bad media day, all they usually do is sport. We had a conference this day, the conference was people who lived in institutions could come up on stage and they had 10 minutes to testify about what they heard and we had the heads of some major disability organisations sitting there on the panel all day, politicians were there and they would sit there. My wife compared the things, she is a good comparer.
It was the most frightening and emotional day I have spent for a long time.

People just came up and told their stories. We had a court stenographer so every word was written down, every single word. It didn’t matter what you said. If it was totally off like is there any ice cream left outside, it was typed out. People just came up and said what they thought. People were in tears because they were remembering not only people who died in those places, not the actual sexual, physical, emotional, psychological abuse that went on, right under the noses of everybody but in the full knowledge of all the staff, in the full knowledge of the Directors and the people who ran them. It was almost sanitised. It’s like we can’t believe that people were killed in the holocaust. We can’t believe that German mothers and fathers would offer up their kids to the gas chambers. When you say it can’t be that bad in the institutions you really do need to listen to what the residents are saying and sometimes they were too scared to say anything.

Some people and these people were very brave, some were out, not all were out, some people got out for the day and they came and testified and this is deep South America so you’re not in a good spot to be that much of a radical. They took very brave risks talking about everything that was going on. I was saying to some of the people around, we talk about disability and discrimination, we talk about us being discriminated against but even those words really aren’t strong enough for what’s happened to some of our people.

My problems pale in significance in terms of those people and it’s really time that we remember those people and look behind walls, lying in halls ranging against the dying of the light. There is a t-shirt with that on. I should’ve worn it today that would’ve been a good one to wear. Remember that and now that you kind of know that, maybe you want to check it out, whether I’m right and whether those places exist here. If they do how are you going to close them and get rid of them? You have a question at the back, I thought I would do a quick song to finish.

QUESTION
(inaudible) I was in that home on my own. I started in advocacy in 1989 and some of the stories just blew me away. They talked about shock treatment, they talked about being belted up by workers. It just blew me away. You kind of wonder why they enforced workers with that kind of mentality that they could belt people up or give them shock treatment. That kind of made me feel very (inaudible) and I still feel (inaudible) and 3 years later, it still makes be shudder to think about what these people have gone through. Its people I know people I grew up with, it’s amazing.

JOHNNY CRESCENDO
I didn’t catch it all but I think you were saying you’ve seen it yourself and how bad it was.

RESPONDENT
Peter grew up in a family environment but a lot of his friends have come from institutions. He is wondering why the Government or organisations employed people with that attitude in institutions.

JOHNNY CRESCENDO
Because it’s cheap labour and you won’t make a profit if you don’t employ cheap labour. That’s not to say people that work for minimum wage are Nazis, it’s about training, support, it’s about being able to think about who do we hire not just hiring anybody. I haven’t got much time Peter, I think that’s part of it.

I also think that’s part of the campaign. I think we began in England to get some things like the Community Care Act, we’ve also got direct payments where disabled people can get the money and we can take that money where we want. I think we got service for the person, we’re working on housing. We haven’t got independent living centres in every area, we haven’t done that yet. They’re under attack at the moment.

In America the victories are more gradual. If you look at America 20 years ago there were more people in institutions than there are now. We are slowly getting them out but it’s like pulling teeth. There are some great heroes who go into institutions every day for nothing, its voluntary work and they talk to those people in those homes and they get them out. We can get the services to get them out. We’ve done that hundreds and hundreds of times. Every time we get them out that’s when we hear the stories, that’s when it starts to get really horrible.

This is a song called Tear Down the Walls. I just want to say thank you to everybody who has helped to get me over here – Sharon and Sarah. It’s been a lovely conference, I have had a great time. I am really pleased to have met most of you and had a chance to talk to you. This is a song I wrote after Wade’s funeral. This is a song I wrote for Wade I talked about the other day.

TEAR DOWN THE WALLS LYRICS
This song is for all the people who died in a nursing home
Whoa.
This song is for all the people going to die in a nursing home
Whoa….
Tear down the walls, tear down the walls of the nursing home
Wahoo…
This song is for the right to choose where we live
Whoa….
This song  is for the right to decide how we live
Whoa….
Tear down the walls, tear down the walls of the nursing home
Whoa….

Take off your white coat, strip yourself and bow
Can’t you see the justice coming at you now
It’s coming down your road, it’s coming down your street
It’s coming for your kids, they’re going to hate you if you don’t act now
Whoa….

This song is for the right to choose your partner and sex
Whoa….
This song is for the right to decide what you’re going to do next
Whoa….
Tear down the walls, tear down the walls of the nursing home
Whoa…..

This song is for all the people who fought and died against the beast
Whoa….
This song is for us (inaudible) pride that will increase
Whoa….
Tear down the walls, tear down the walls of the nursing home
Whoa….

Stop talking compromise, there is a war going on
Stop acting so surprised you know what you’ve done
Stop feeling guilty you’ve got to act upon
What you know is justice
What you know is right
If you really agree with it how do you sleep at night

Tear down the walls for the drugs and damage
Tear down the walls for abuse and cabbage
Tear down the walls for our children’s lives
Tear down the walls for the right to decide what goes on in our lives

Tear down the walls
Tear down the walls
Tear down the walls of the nursing home
Whoa….

Our homes not nursing homes
Our homes not nursing homes
Our homes not nursing homes
Our homes not nursing homes
Our homes not nursing homes
Our homes

(APPLAUSE)

JOHNNY CRESCENDO
Thank you, see you later

SHARON GRANEK
It was great to have Johnny at the conference and hear what’s happening in England and America. Thank you so much it’s been a privilege to meet you Johnny. Any last comments people want to make, Deidre.  I think everyone is spent, it’s been a big two days. I will just pass on to Deidre.

DEIDRE
I would also like to thank Johnny on behalf of everybody at the conference. We’ve had a fantastic time and really enjoyed you talking to us and your entertainment. I am sure everybody would agree with that.

(APPLAUSE)