Pffftt

I have a dilemma and I'm going to try and state it simply. 

I absolutely believe that people should be able to be whoever they are...be their unique selves...make sense of the world in their own way regardless of how much sense that makes to anyone else. 

AND

I also absolutely believe and KNOW through my own experience that much of the quality of people's lives is influenced by how other people perceive them. In SRV terms the imagery surrounding people and the competencies they display influence how people see them and create opportunities for them to experience what we would typically describe as a good life. 

In my mind these two ideas sit in conflict. I want to make them either/or but I think that the truth is 'and/both'. And I'm not sure what that would look like.

Pffftt...that was the sound of my mind being blown...

And this is something to help soothe it back together again...

http://youtu.be/V7KsDv1K8-k

What the Butler saw...

It is a truth universally acknowledged that I have terrible taste in films. 

I frequently fall asleep in the middle of a movie...often sooner than that...so if I stay awake all through then I suppose that's an indication of something. 

I don't get 'clever' films...I don't see, never mind understand, cinematographic nuances. I like a good story with interesting characters...anything else is wasted on me. 

It doesn't take much to stir me up in a movie...I'm easily frightened...easily delighted...easily inspired. The scene in The Dead Poets' Society in which the boys stand on their desks and declare 'O Captain, My Captain' can still bring tears...

I say all of this to let you know how little discernment I bring to any film and how much I am swayed by the emotion of it all. And I say this because today I saw a movie that had a profound effect on me.

Rick and I went to see The Butler. Forest Whitaker is the star of the film with Oprah Winfrey doing a fabulous job as his his co-star. It tells the story of a young boy growing up in the Southern states of America whose life is turned upside down by the abuse of his Mother and the terrible death of his father at the hands of the young plantation owner where the family worked picking cotton. A series of events bring him to a position in The White House where he works as a butler. The story then reflects different perspectives on the Civil Rights Movement in America. Sorry...sketchy description in case you want to go and see it. 

I stayed wide awake all through the film and I've been deeply affected by what I saw. I had a bit of a glimpse...all be it a Hollywood glimpse...of what it meant in terms of sheer physical courage to take a stand against racism and discrimination. 

Insults of all sorts...rough handling...beating...dogs...water cannon...vitriol...hate...petrol bombs...fiery crosses...white hooded assailants..the weight of the law against you...rape...spitting...lynching...burning...death...

That people would run that sort of risk for something they believe in just astounds me. I am in awe of that courage. Courage that hurts and bleeds.

It is still required today. The hatred isn't over. It may have modified somewhat but the world still lives with the struggle of being at ease in the presence of difference. Every minute of the day, someone, somewhere is summoning up the courage to put themselves on the line...to act...to speak out...to face and bear the consequences.

As I've said...it was a Hollywood glimpse of things...it will be imperfect and incomplete. It won't have told all the sides of the story and it will have exaggerated some things and wiped a slick of vaseline around the lens of others. But whatever the whole truth, it took...it takes...courage to stand for what you believe in.

Respect to all who find it.

“Courage is not simply one of the virtues, but the form of every virtue at the testing point.” 

C. S. Lewis

Could someone bring a cold flannel?

The theme of having fallen asleep has been recurrent for me over the past year. It started through hearing Beth Mount and John O'Brien's words captured on video for the course on Citizen Centred Leadership developed by Carol Blessing at Cornell University. Part of the course involves participating in a weekly webinar which took place at 3am Perth time...I was often, quite literally, falling asleep! But when Beth and John talked about Person Centred Planning and wondered how we had come to this state of affairs in which planning seemed to have been colonised by the service system and lost its power and direction and purpose, they both described it as having fallen asleep.

I was deeply challenged by that. I feel sick about the many ways in which I have contributed to the sleepiness and have been wondering what I could do better. A few things have wakened me up a bit and then, this morning, another call to be awake and watchful from Simon Duffy at the Centre for Welfare Reform. 

If you don't know the work of the Centre then you really need to check them out at www.centreforwelfarereform.org

Simon posted a quiz on Facebook this morning - here's the link

 http://www.slideshare.net/simonduffy/welfare-reform-true-or-false

'We fell asleep. We forgot that they don't take care of us, we take care of each other. We forgot that it's the rich who need the poor, not the poor who need the rich. We forgot that politicians work for us, we don't work for them. We forgot that government doesn't innovate, people do. We forgot that government doesn't create wealth, people do. We forgot that government doesn't know best, people do. We forgot about citizenship, we forgot about families, we forgot about community. We confused good with big. We confused achievement with wealth. We confused love with control. We forgot that the Welfare State was made by us, that it belongs to us and it needs to work for us. it's time to wake up.'

I'm grateful for this powerful statement...a blow of sea-air through my foggy mind...

In his poem 'A Ritual to read to each other', William Stafford says that 

'...it is important that awake people be awake

or a breaking line may discourage them back to sleep;

the signals we give - yes or no or maybe - 

should be clear, the darkness around us is deep.'

I don't really know how to finish this post...it's not for me to say whether or not you're snoozing gently or are sound asleep...

But I'm off to wipe my face with a cold flannel, sit up straight and pay a bit more attention...

Maybe that will help...

A Question...

A question.

Whose needs are being met?

In the arguments for and against building new institutions...
In the calling out for more respite care...
In the wrapping in cotton wool...
In the blindness and thoughtlessness...
In the policies and procedures and the risk assessments and the job descriptions...
In the ticking of boxes and filling in of forms and the meaningless plans and the intrusive questions...
In the assumptions made and the knowing what's best...
In the endless talk about funding constraints and block contracts and whether it's shared or self determined...
In the narrowed horizons and lowered expectations
In the search for the next model...

Whose needs are being met?

You don't have to be bashed and battered to experience abuse and neglect.

Invisibility will narrow your options and opportunities.

Indifference will kill you every time.

Whose needs are being met?

“A lot of you cared, just not enough.” 

Jay Asher - 'Thirteen Reasons Why'

A small, shy truth...

Wild Geese

You do not have to be good.

You do not have to walk on your knees

for a hundred miles through the desert, repenting.

You only have to let the soft animal of your body

       love what it loves.

Tell me about despair, yours, and I will tell you mine.

Meanwhile the world goes on.

Meanwhile the sun and the clear pebbles of the rain

are moving across the landscapes,

over the prairies and the deep trees,

the mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air,

are heading home again.

Whoever you are, no matter how lonely,

the world offers itself to your imagination,

calls to you like the wild geese, harsh and exciting-

over and over announcing your place

in the family of things.

Mary Oliver

In the face of all my bluster and ranting I'm glad of this quiet and joyous word...

Here's the truth...life goes on...beautifully...and somehow, we belong...

The post in which the writer spontaneously combusts...

Apologies...life is what happens when you're writing blogs...some of the life going on around here has meant that I may be the only person for whom this makes sense or who can follow the flow of it...
Good Luck!


I started working with people who were labelled as 'intellectually disabled' in 1994. 

After a very lacklustre University experience I left Edinburgh without a degree, my hopes and dreams for the future in tatters. I needed a job but I couldn't think of many things that a failed Church of Scotland Deaconess who'd had a nervous breakdown; a long-ish psychiatric hospital career; crises of faith and confidence and a reputation for 'never sticking at anything' could do. It all seemed a bit bleak and my old patterns of failure and flight were cranking up nicley...

I've known a few miracles in my life and at Algrade in Humbie, a small village at the foot of the Lammermuir Hills in the Scottish Borders another miracle occurred. 

Algrade was a originally a school, set up in the 1960s...so named because it took 'All grades' of people with disability. (Not actually true...most of the people there had very moderate degrees of intellectual disability). In it's time, it was regarded as a very fine school with an emphasis on giving people an education.  

Over the years, the attention to learning waned and instead Algrade became a holding place for the people who lived there. They became increasingly isolated and trapped within the very conservative Christian ideology espoused by the owners. Eventually, after 12 YEARS of suggestions, requests, instructions and then warning from the Registration and Inspection body of the Department of Social work the Certificate of Registration was withdrawn. The Church of Scotland Board of Social Responsibility moved in as Caretaker Managers and I got a job there. Within 24 hours of the Church taking over, 11 of the men who lived there made allegations of sexual abuse against a former member of staff. Everyday there were new stories of abuse and neglect, bullying...the list was long...
The physical condition of the place was bleak...cold...run down...not very clean...some of it just not safe...This was in stark contrast to the outward appearance of a country idyll...whitewashed cottages dotting the green hillside...whited sepulchres...disguising abuse and corruption and just plain old meanness...

In the beginning, I was outraged...openly, often incoherently, frequently 'inappropriately'...I was consumed by it. It leaked out of me, sometimes through tears but mostly it was a story that I couldn't stop telling...I told it everywhere, to anyone who would listen...

I just couldn't get over what had been done to this group of people. I couldn't believe that we'd had concerns for 12 years  and we'd managed to hold on to them...12 years...and I was about to spontaneously combust because the pace of change and improvement for them was glacially slow...

The brief version of the ending to the Algrade story is that people were moved out to more individual accommodation...some are happy and settled...some are not...
As far as I know, no-one has been compensated for the shit their life turned into...

For me, Algrade was the experience of my life...it started me on a path that has led me here. It was transformative...I learned to think differently...to intentionally choose to see people and situations in another way. Through my work there (and at the risk of sounding really farty) i believe that I found my calling...my life's purpose...however you want to express that. 

I don't think that the call is about 'disability'.

I do think that it's about justice.

The injustice...the unjust - ness of Algrade consumed me for a very long time. And then I just seemed to lose the sting of it...there's so much of it around...in so many different places. I found my tolerance for injustice grew and I became adept at understanding and accommodating the reasons...the circumstances...the excuses for why things are the way they are.

It was as if the constant rub of it created a callous. A thick skin grew over the sore places and I got used to living with it.

Last week's experience on the PASSING course has wakened me up a bit. The fine detail of it has forced me to confront again the epic failure of most services to support people well. That realisation, combined with busted mattresses and dust under the counters and the expectations that people will just PUT UP with whatever crap gets thrown at them has just hit me between the eyes.

I'm mad at piss-poor performance from services that make money from people with disabilities.

I am beside myself at shabby, shoddy, won't close doors, won't wash pots, won't extend myself in any way type services where people just take the money and run out the door as fast as their legs will carry them...

I'm over condescension and patronisation (is that a word?) and I'm particularly over it from people who don't seem to realise that unless there's a verb in there...a 'doing word'...then there is no sense in their 'sentences' and that the empty string of words  with which they patronise and condescend is meaningless and offensive.

I am incandescent at the smugness of people who should know better, who dismiss people with a casual 'they just don't get it' and do nothing to explain or help understanding but only condemn and scoff (guilty as charged your honour...)

I feel exfoliated...all raw and pink skinned...plunged into a salted pool and just...stinging...

How this will work out as I try to do my work I have no idea...but at the very least I feel as if I have reconnected with my purpose or calling...I feel more alive than I have for a long time. 

So...just to close...

To all those people at Algrade...

to Margaret and Christine and Mary and Kay and Claudia and Helen and Ann and Charlotte and Jane and Crawford and Willie and Bryan and John and Garry and Thomas and Norah and Stuart and Paul and Peter and Meg and Billy and the woman with the bags whose name I can't remember, I think it was Irene...

Thanks for all that you taught me. I'm sorry for all the times I got it wrong.

I hope you're finding a good life somewhere. 

p.s. Her name is Irene

Ain't a feelin' like it in the world...

I'm not trying to shirk my responsibility or break my promise to myself. It's just that my head is full to overflowing after the past few days. Words and ideas are spilling out and are going to take a bit of time to be formed into something that is somewhat coherent. I had a bit of a crack at it last night and was full of good intentions to post something this morning but the morning brought a few disasters and I feel now like I'm herding cats in my head...

Saturdays and Sundays can be unpredictable in our house. We're very much a the mercy of some of the support we receive. Today, they broke the air mattress on Rick's bed. They did something they've been asked repeatedly not to do but they did it and bust the seal on the mattress. It quickly deflated and is now unusable until we can get someone out to fix it...can't get in touch until Monday...who knows when they'll come and do the repair. We're lucky because we have a Plan B...but it's not ideal and massively inconvenient for...ME...and unlikely to be very comfortable for Rick...not to mention hugely expensive (this company seems unable to charge an amount less than $300)

So I'm not happy and Rick is...well, Rick really... 

Then I was done out of $40 in my change at a vegetable stall in Fremantle markets. As if the injury wasn't bad enough I was about to add insult to it by getting into the most foul slanging match with the stall holder...

PLEASE NOTE...I walked away before I started...

Stealing money is one thing but I was off to a dark and ugly place that I didn't even know existed in the busy world of Heather Simmons...

All of this to say that there's stuff on my mind...hopefully I can lasso it into some kind of order...

In the meantime, here's a little something to make you smile...

http://youtu.be/Pk7yqlTMvp8