When

Monday 26th March, 2012: 12:30am - 1:15am

Where

Blue room

Speaker

Session Summary

This was the plenary session at the 2012 Strengthening Disability Advocacy conference held at Melbourne Park on 26 March  2012.

In the early 90’s Johnny wrote a ground breaking article (our allies within), on what it takes to be an ally to disabled people and the disabled people’s movement. Johnny revisits this subject exploring subjects like consumer control, structuring for power and most importantly how non disabled professionals can truly be allies without taking control. He explores, through real life examples, successes and failure of well meaning people who have had commitment to what it means to be an ally.

Songs: Wheelchair waltz, Strong woman.

 

Transcript

 

SHARON GRANEK:
I’m really excited about our next guest and I had the privilege of spending a bit of time with Johnny yesterday. Boy are you in for a treat. Johnny who has come all the way from America to be with us today was born in the United Kingdom but now lives in the USA. He is a disability civil rights singer and songwriter and activist. His songs including Choices and Rights and Tear Down the Walls have become anthems for the Disability Movement in the UK and the United States. In the early 90’s Johnny led the UK movement to victories – removing patronising representations of disabled people in the media and coined the phrase Disability Pride.

He went on to found the Direct Action Network called DAN, which uses public demonstration and non-violent civil disobedience to increase the awareness and liberation of disabled people. DAN was instrumental in getting the Disability Discrimination Act of 1995 passed and for getting commitments from the Government to make all transport accessible. We can learn a bit from him. Johnny joined Adapt in the US in the early 90’s and is still campaigning for disabled Americans to have the right to stay in the community and not be forced into institutions. That ring any bells? Yeah.

Johnny has worked as a senior policy advisor on disability for Birmingham City Council and is currently a consultant, trainer and mentor on inclusive education, advocacy and disability history for a number of organisations in the United States. He is married to Cassie James Holdsworth a famous disability rights activist in her own right and he has two daughters – Yacia and Danielle. Could we have a big round of applause for Johnny.

(APPLAUSE)

JOHNNY CRESCENDO
Wow it’s really good to be here and like was said earlier it’s great to see lots of people with disabilities in the audience. I go to lots of conferences and sometimes there is not one disabled person there. I just wonder what they all talk about without us. It’s really good to have that. I feel really kind of comfortable here.

We’re going to start off, we’re going to do a little bit of I know Australians like sport so I thought I would start off with a little bit of a sport theme going on. I have got two volunteers coming up and I would like them to come up now, if you could come up.

We’re going to need some fighting room here, put a chair there and a chair there thank you. I’m going to go in the middle be the referee. What’s your name?

GIOVANNA
Giovanna.

JOHNNY CRESCENDO
Let’s hear it for Giovanna

(APPLAUSE)

JOHNNY CRESCENDO
What’s your name?

MICHAEL
Michael.

JOHNNY CRESCENDO
Let’s hear it for Michael.

(APPLAUSE)

JOHNNY CRESCENDO
Before we start I know you Aussies like a bet, who do you think is going to win?

(AUDIENCE CHEERING MICHAEL AND GIOVANNA)

JOHNNY CRESCENDO
Okay after three, one two three – go. Okay now why do you think Michael won?

AUDIENCE
Because he is a man.

JOHNNY CRESCENDO
Over there why?

JOHNNY CRESCENDO
He is stronger.

JOHNNY CRESCENDO
Okay what I thought we could do now, I will make the first suggestion. This time I want you all to cheer for Giovanna, can you do that. How should we do it? Should we go GIOVANNA? Ready, get ready to go and I want you all to cheer for Giovanna let’s see if that helps.

(AUDIENCE CHEER GIOVANNA)

JOHNNY CRESCENDO
Well that didn’t work. Maybe you didn’t cheer loud enough. Let’s do one more time.

(AUDIENCE CHEER GIOVANNA)

JOHNNY CRESCENDO
Anyone feeling sorry for this person here, it’s a shame isn’t it? Is it a shame she is a woman or is it a shame she is not as strong? Why do we feel sorry?

(INAUDIBLE – TOO SOFT IN THE AUDIENCE)

JOHNNY CRESCENDO
Giovanna you’re not doing it properly, you have to angle your arm better. It’s all your fault Giovanna. Okay we will try that, can you raise your arm a little bit. Off you go.

(AUDIENCE CHEER GIOVANNA)

JOHNNY CRESCENDO
It’s not working, keep going. Okay, alright well that’s not worked up till now. Anyone got any ideas how we can help Giovanna?

(INAUDIBLE – TOO SOFT IN THE AUDIENCE)

JOHNNY CRESCENDO
Could use two hands. Any other ideas?

AUDIENCE
A volunteer.

JOHNNY CRESCENDO
Who wants to volunteer – okay come up. Anyone else – okay now we have two more people, come up on the stage.

JOHNNY CRESCENDO
What’s your name?

MARK
My name is Mark.

JOHNNY CRESCENDO
You come and kneel down here. What’s your name?

EMMA
Emma.

JOHNNY CRESCENDO
Come and kneel on the other side. You put your hand like that, you put your hand on there and you can pull. You are all pulling this way.  Let’s see if this works. One, two, three, go.

(AUDIENCE CHEER GIOVANNA)

JOHNNY CRESCENDO
Yes, okay. I would like to thank all these folks Mark, Giovanna, Emma and Michael.  A big hand please.

(APPLAUSE)

JOHNNY CRESCENDO
So that was fun. What was that about, anyone think why we did that?

AUDIENCE
There is strength in numbers.

AUDIENCE
Coordination.

JOHNNY CRESCENDO
When we started the game off it wasn’t very fair was it, it wasn’t fair at all. We had a big guy, small woman. People were saying I think Giovanna will win. Well you would’ve lost your money, hey. So what we did for the first three or four times we did it, we just watched something going on that was very unfair. Didn’t we, and we knew it was unfair and what was going to happen and it would always happen. What was the first thing we did?  The first thing we did was we all cheered for Giovanna. Did that work?

AUDIENCE
No.

JOHNNY CRESCENDO
Not really, made you feel better though. It made you feel like you were doing something for Giovanna even though it didn’t work. Quite often we see unfairness in society. We see disabled people or people with a disability, sorry I’m an old-fashioned guy, we see people with disabilities being treated unfairly. We don’t really do anything that’s effective. We might feel sorry for them. Somebody felt sorry for Giovanna. We might blame them – Giovanna wasn’t doing it properly, you’ve got to do it properly, you’ve got to lift your arm up. Also we could go on Facebook and like it or join a cause, one click and you’re done. You kind of feel better.

Well quite often when unfairness is like systematic, when unfairness is going on day after day that’s not going to ever do it, is it? Giovanna is never going to win on the arm wrestling.  In the end what happened was what was your name again – sorry?

MARK.
Mark.

JOHNNY CRESCENDO
Mark is my organiser. Mark is spot on because what Mark came up with was a good idea. Didn’t he? Yeah,  it was Mark that came up with an idea that she might need some help. The idea wasn’t that she needed help he knew what that would be. In the end how did Giovanna win, anybody want to answer that for me? How did she win?

AUDIENCE
Somebody helped.

JOHNNY CRESCENDO
Somebody organised some help.

AUDIENCE
In the right direction.

JOHNNY CRESCENDO
The really important thing is sometimes you’ve just got to get off your butt. Sometimes you have to get off your arse and do something. It’s not enough just to sort of watch this thing going on, comment on it, think about it. Sometimes you’ve actually just got to do something. Sometimes you have to have the idea to do something like Mark. Mark has the idea to say let’s do something.

That’s really the point of that exercise, one more round of applause for those guys.

(APPLAUSE)

JOHNNY CRESCENDO
This little speech, I’ve been told to talk about being an ally, being an ally to people with disabilities, being an ally to how we can help people like Giovanna win in this situation. It’s really interesting to talk about this because obviously in this room there is people with disabilities, there is parents and there is people who work with people with disabilities. We have a whole kind of range of people here who are in a sense concerned and they’re trying to become allies in some way or another. Am I right?

Going back to what I said at the beginning, I have been to conferences where we are talked about, none of us, I’m the only person there representing every disabled person in the world. You think about where we are today and how we’ve got in this situation. My message to parents, my message to non-disabled people is just think of the world that’s been created before you actually started to involve us. I’d like to sort of just read a quote out. I noticed some people in here who are well read. I’m going to read out a quote and at the end of the whole thing I will tell you who wrote it. You can have a guess in your mind and I’ll shout out if anyone gets it at the end. If you do I will give you a free CD.

I’m just going to read this out and it will be up there so you can read it for a little bit, have a little think about it.

“The role of non-disabled people in our history is a curious one. Very few disability organisations are not disable directed and true to their image the non-disabled liberals always knew what was good for people with disabilities and told them so. The wonder of it all is that people with disabilities have believed in them for so long. It was only at the end of the 60’s that people with disabilities started demanding their own guardians.”

That’s the quote, I won’t tell you who it’s from but you will be quite surprised by who said that at the end of the thing. It’s true that most of our problems have been created by the fact that we haven’t been consulted, we haven’t been in any position of power and that we haven’t been part of the plan. If we had been part of the plan, we wouldn’t have to campaign for accessible housing, we wouldn’t have to campaign for accessible transport because that would already be done. We wouldn’t be in institutions because we would’ve told them we don’t want to live there. We wouldn’t have been sterilised, we wouldn’t have been murdered and we wouldn’t have been all those things.

All those things happened with us not in the room. All those plans and plots were made with us not in the room. The caution is to non-disabled people and for parent’s for that matter to make sure we’re in the room, make sure we’re part of this discussion. Part of you being an ally is to make sure that happens and not to speak to us when we’re not around.

Now I’ll talk about myself a little bit and some of the experiences, because I am a storyteller. I’m getting on in years now and I have done a lot of things. I want to tell you first of all and this is about one of my allies that I know, the person who sort of got me going in the disabled peoples movement. I used to be a youth worker and I used to pass, used to think I wasn’t disabled. I didn’t want to hang out with disabled people for a long time, which was a real bad thing for me to do. I was pretty ignorant about the whole damn thing.

But I was a youth worker and I was campaigning on things like anti-racism and lesbian and gay rights, stuff like that. Anything but disability. I didn’t really want to work in that but then I got this job as a boss. I was like a team leader of this whole group of youth workers. One of my team was a woman called Izzy. Izzy at the second meeting said you’re going to be working with disabled people that’s why we want you to have the job. Basically she bullied me and sometimes allies can do that, sometimes allies do know best. Sometimes allies will tell you you’re wrong and you made mistakes or push you into things that maybe you will be uncomfortable with.

From that little bullying session from Izzy we then started to work with people with disabilities and we founded one of the very first independent living centres for people with learning difficulties in the UK. From that group of people that I worked with, I still go back to that group today and it’s 30 years ago now. That group of people with learning difficulties taught me everything I know, it really did and I’m not joking there. I always think whatever you come up with, whatever situation you throw at me I go that reminds me of Andrew or that reminds me of Christine so we can go back to that group. Sometimes allies challenge you because sometimes they’re right. They’re not always right but sometimes.  A good eye knows when to stop patronising you and saying you’re wonderful when you’re not. A good ally can also tell you when you’re not being that wonderful so it’s like a good friend if a person can say that. That’s one thing you need to know.

The next ally I would like to talk about is about a guy called Wade Blank and this is Wade on the t-shirt. Later on when I’m rolling around at lunchtime you may want to read the back of it that’s kind of where it started. Wade Blank was a guy from America who worked with Doctor Martin Luther King. He was desegregating the South. He was a Minister and he was in a place called Ken State where there is a lot of racial violence. His own Ministry, his own house was burnt down and fire bombed by the white supremacist and the Ku Klux Clan. He eventually had enough, had to get out. He was so stressed out. He thought working with people with disabilities might be an easier option.

What he did was he got a job as the youth organiser of a nursing home.  The idea was that he would provide fun activities so that more young people would want to live in an institution. It didn’t take him very long to realise that he was on the wrong side. This was not about liberation, this was not about helping. There was a lot of abuse that went on in the nursing home, the kids were being drugged up to go to sleep and stuff like that. He realised he had to do something. He could’ve just left the job, he could’ve got another job thought this is not for me I will go and get another job. But he didn’t want to leave the young people in the nursing home.

What happened eventually was he was fired but he found a lawyer, and he sued the nursing home for millions of dollars. All the abuse was reported and he eventually got a lawsuit and won about $25 million. He used that money to get the people out. He took out 19 young people. This was way back in the early 80’s and there was no independent living services, there was no services. He personally was the attendant or the carer for these 19 young people.

Every day he would get them up, he would bathe them, help them on to the toilet. He would help them prepare meals and so on. He founded a thing called the Atlantis Community. This was going pretty well. The young people got their own apartment, they were living on their own or with friends and it was going really well.  But they couldn’t get anywhere, they were stuck in the house because the transport system was inaccessible. This is all in Denver by the way, Colorado.

One day they decided they would go out and stop a bus and have a protest. The very first bus protest happened in Denver and Wade was there and there was 19 other disabled people. They just took one bus, they held this bus up. The Mayor, the police chief and all these people and the bus company says whatever you do don’t arrest these people. So Wade thinks that’s fine we can do whatever we want now. So they were sleeping on the bus, they held it for four days. Eventually Denver became the very first city in the world to have a fully accessible public transport system.

I met Wade in 1990, on my first visit to America. We spent a bit of time together on the way home from a demonstration in San Francisco and drove back to Denver.  I rode down with Wade some of that way. I stayed in Denver for a little while and I also stayed with him over Christmas that year. In February after that he went on a holiday to the Gold Coast with his kids and one of his kids Lincoln went swimming and started to drown. Wade went in after Lincoln and they both drowned. He was 50. His first holiday for years.

This shirt was made for the memorial of Wade. Everybody who was ever famous in America was there. It was held at the Lincoln Memorial where Martin Luther King spoke. I wrote a song for Wade and played that there. At some point over the next few days I will play that song. What they had done before Wade died, because it was such a landmark demonstration, the very first time disabled people protested about public transport, in the end the Mayor and the bus company all put together and at that bus stop there is a plaque. On that plaque are all the names of the people who took part in the demonstration as a historic landmark. Guess whose name is not on the plaque – Wade Blank’s name is not on the plaque because he is a non-disabled person. He said I don’t want my name on the plaque, I was just helping disabled people find their power. It wasn’t about me getting power at all, it was really about those people doing it.

That summer I went over after we did the memorial we went back to Denver.  I went over to the bus stop and got a piece of stone and underneath the plaque I wrote Wade’s name. I believe people are still doing that. Disabled people are going up to that…this is making me very emotional when I think about it. That’s what I call an ally. Nobody could talk about it in different ways but for me Wade was a true ally and a true friend to disabled people and god rest his soul.

I just wrote down a few things. Allies like Wade the qualities is that allies are good listeners. Allies learn they don’t think they come in with all the answers straight away. They’re there to learn. Good allies know how to respect people – you’re not better than me, you’re not worse than me. You have to think about it in terms of equal respect. Most of the great allies move on and do themselves out of a job because there is always another job to do. It’s not like you become unemployed, you move on because you’ve taught the people who you were working with how to take charge themselves. You’re always thinking about how can I get out of this, how can I not do this job and let a person with a disability do this job. Then you move on. My experience in knowing really good allies is that that’s how they do it. They move up and up. They don’t lose jobs they get more respect. They don’t occupy our space. In other words if this job would be a great job for a disabled person to do and they could do it then they should be doing it.

We need to think I need to get out of this space because disabled people aren’t employed as much as non-disabled people and they need to work. We don’t apologise, we don’t say we’re sorry. We don’t feel pity, we organise, we can help organise. We can do that stuff that Mark was talking about, having good ideas, bringing them to the group and then telling people how to get on with it.
They may be friends but not necessarily. You don’t have to be the best friend to be an ally. Friends can be something else. They never talk about you without you.

I might read another quote out now.  Can you give me an idea about the time?

There is five minutes left.

JOHNNY CRESCENDO
I’m going to read one more quote out and then I’ll tell you who it was. Actually I won’t do that. I have to read two or three out and I only have 5 minutes. The quote I read out before was about non-disabled people seem to have a superiority complex. Disabled people seem to have an inferiority complex. It’s the old joke – if there is one non-disabled person in a group of disabled people everyone thinks the non-disabled person is the leader. Also as disabled people we sometimes feel like non-disabled people are smarter than us, clever than us. Maybe they have degrees, nice houses or bigger jobs. We have to get over our inferiority complex and part of what an ally does is to make us not feel inferior and make us feel like we’re the experts and listen to us and take note.

The person who wrote that thing up there wasn’t even talking about disability, in fact all I did was change two words, which was disabled and non-disabled. The words that should go in there is black and white. The person who wrote that was Steven Biko who is from South Africa, the person who was in the film Cry Freedom. He was talking about a partied. He was talking about black people in South Africa didn’t have the confidence to organise themselves and the white liberals who came in to try and help and were supportive of it were taking over. He was saying that the minute a white person comes in the room everyone stops and listens to what they have to say. It doesn’t happen the other way around when a black person walks into a room. I think there are a lot of similarities between what Steve Biko was writing about in South Africa about the way in which allies can become allies, how we need to think about being allies to each other.

Lastly I will do a song. I guess I have to do that. Let me get on to the other mic. Lastly it’s really about power. It’s about how you’re going to be power. Mahatma Gandhi  once said we don’t need to worry about inclusion because if you have equal power inclusion will fall like a leaf. So don’t worry about inclusion, don’t worry about integration, worry about power. Think about who has the power in the room.

So often I go to a meeting where I am the only unpaid person. Everybody else in that room has got a job and they’re getting paid to be at the meeting. I’m not being paid, I’m just there as an advocate or a volunteer or a representative of a group. Think about power and think about how you can make the power more equal and how you can make that power….If you think about power all the time you will start doing a really good job.  You will find out what the issues are.

I’m going to play you a song and this song….there is going to be more songs tonight. In your bag one of the CDs you’ve got in the bag there is a whole heap of my songs and this is on that.

Other people who have been really good allies for me apart from my mother of course, I didn’t mention my parents, they were great allies, it’s all my lovers. One of the things when I was a kid, when I was about 14 the one thing I didn’t want to do was dance. I still walk a little bit, I walk with a limp. I was dancing and I didn’t want to dance with a limp. I felt very self-conscious about doing that. I guess it was like all my friends and in the end my lovers who helped me to learn how to dance. This song has that double meaning about wanting to be not just in love with somebody else but also what you sort of travel with was you and being partners in what we’re doing which is to try and get some justice and equality in this world for people with disability. This is called Wheelchair Waltz.

WHEELCHAIR WALTZ LYRICS
Come after work, stop feeling blue kick on your dancing shoes
Come on babe, I want to dance with you
I know people will stand and stare, don’t let it hurt, they just don’t care
Come on babe, I want to dance with you

Open your heart, let the music sing
We won’t dance steps in their chains and locks
We’ll dance for laughs, we’ll dance for shots
Come on babe, I want to dance with you

If somebody is getting old, you do the rock I’ll do the roll
It’s late babe, I want to dance with you

Difference makes the world go around
Dance to a different sound

I want to dance with you
I want a chance with you
I want to dance with you
I want romance with you

Hey babe, I want to dance with you

(APPLAUSE)

JOHNNY CRESCENDO
Thank you very much and I’ll see you later, thanks a lot.

SHARON GRANEK
That was fantastic Johnny. For those who want more after the conference tonight we’ve got drinks and Johnny will be doing a couple more songs. I hope you’re all going to stick around for that.