Friday, November 29, 2013

The Right To Be Fat

I know a lot of fat people.

Call it what you will. Morbidly obese, overweight. And some, downright fat. My friend Su laughs with her head thrown back at the notion that she’s a lesser woman because of her weight and drinks another Coke. She’s been known to call herself Fatty McFatfuck, thanks to the movie Ted. Su knows that she is a glorious specimen of womanhood and she will bloody well eat and drink whatever she likes, thank you very much.

Clearly, Su doesn’t have a disability.

If she did, her choices would probably be severely restricted – a menu of limited options. You want a Coke? Is that a good choice, Su? You know you’re watching your weight. That takeaway? Is that the best choice you can make? It’s hardly nutritious. And that shirt – well, it’s not actually appropriate, is it? We don’t want people seeing your cleavage, do we?

What time are you going to go to bed tonight? Well, the attendant won’t be able to work past nine, so it looks like you’re going to have to miss going out with the girls. Sure, other people go to bed at eight or nine. It’s not unusual.

Who is going to give you a shower today? Do you want it to be someone you know, or like? A man, or a woman? Does it matter who sees you naked?

God forbid you should want to have sex with a partner of your choice, let alone a partner of the same sex. And try telling your religious service provider it’s okay for you to be gay. I dare you.

In Serviceland, they call it ‘The Dignity of Risk’. But it doesn’t seem to impact on the way there are always single beds in group homes, nor the way people’s diets are restricted, nor the way people aren’t allowed to spend their own money in the way they want.

We need new language around human rights.

The Right to Sexuality (including the right to have sex with someone of the same sex)

The Right to Be Fat

The Right to Be a Slut

The Right to Vote (and you thought we’d won that already)

The Right to Get Horribly Drunk and Fall Down

If you have a disability, it doesn’t mean you don’t know what you want to do or when you want to do it or who want to do it with.

The Dignity of Risk. The language of risk says, ‘What if something terrible happens?’ But it doesn’t allow people to make their own mistakes, to experience life, to be free. What if we said, ‘What if something wonderful happens?’

Living at risk is jumping off the cliff and building your wings on the way down.

- Ray Bradbury

Sunday, November 24, 2013

Rapists, protect me.

And herein lies an interesting discussion, a topical one on White Ribbon Day.

NDS provides support to service providers. They are their stakeholders, not we people with disability, not family members.

I was asked recently if I went to a consultation forum to support service providers to better prevent and respond to abuse and neglect of people with disability. It's part of an NDS national project. I have done some past work and am currently working on some projects around prevention of abuse and neglect against people with disability.

Of course I didn't go. I wasn't invited.

Neither were any other people with disability. In fact, the invitation was fairly clear in excluding them -

- All interested disability service providers. CEOs and operational line managers would especially benefit from attending.

- Representatives from disability complaint authorities and other relevant statutory bodies.

- Advocacy organisations representing people with disability.

- Other interested professionals including mainstream (non-disability specific) abuse support services, academics and consultants.

Please note forums are not open to members of the general public.

Now, here's the thing. The forum is around institutional neglect and abuse. Think about it. It's a bit like saying - 'Frood, I know that six members of your family have been violently raped over the past year. So we're going to the prison to talk to the paeophiles and rapists about ways to make sure it is prevented in the future.'

I'm not painting all service providers as abusers - far from it. I know that there are honest and dedicated and compassionate service providers who are not the management of the Yooralla staff, who ignored warning signs that allowed a rapist to perpetrate monstrous crimes against disabled people. I am just saying that if we are not in the conversation, how will any of it change?

Rapists, paedophiles, murderers. People who have starved and neglected and abused us, come up with a plan to protect us, please. You can let us know what you've come up with once you've developed it.

Not a person with a disability in the room.

Saturday, November 16, 2013

On Vd and 'the Divide'

Here is an explanation of the words 'VÄ‘', the 'letters after my name'.

It was not a name I chose for myself. It was a slur given to me by a group of people who called me and others the 'verbal disabled'.

Some of us have chosen to adopt this name and wear it like a Star of David - I choose to speak my truth and turn hate speech around.

I wrote that when I was really angry and hurt and upset.

Unlike many other people with disability, I have not grown up being discriminated against. I have never been the subject of hate speech - not a cripple nor a retard nor a coon nor a slanteye. None of those hateful and hurtful words, because I grew up as one of us, not one of them.

The other day, a young person gave me a powerful gift. She burst into tears, and sobbed with complete anguish over some bad news. She had held it together all day, but when she had finished, she cried.

It made me think about how generous some people are with their emotions - it is a powerful gift, to express something in a way that others will instantly understand. Whether it is your grief or anguish or rage or horror or outrage or anger or joy or hopefulness.

I've always liked other people who laugh with abandon - throw back their heads and laugh uproariously. And I'm confused by those people who hide their feelings, even when it's accidental - out of a sense of propriety, or because of the way they've been brought up.

That brings us to VD.

The women who badged me and others who can advocate for themselves called us this name because we are not one of 'them', in their opinions. Not the women themselves, but their children, who have severe and profound intellectual disability. They see wheelchair users and people with sensory impairments as being the least of the disadvantaged in the hierarchy of disability, and that is sometimes true when it comes to voice. But sometimes it is not.

I have thought about this for a long time.

I remember reading a productivity commission submission from one angry, bitter parent. I blame her not at all for being angry and bitter. I would be the same, in her circumstance. Here's her world view on disability -

The key focus should be on those PWD who have the highest needs and are at most risk of being forever marginalised in our society; those PWD who are severely to profoundly intellectually disabled. To me, there is a hierarchy of disability; some disabilities are more acceptable to the general public than others. I have summarised the hierarchy as:

1. People who are accepted, welcomed and championed. People who have full intellectual capacity, are articulate, have some physical disability and who perform in elite sports or achieve incredible feats of endurance and perseverance. For example the downhill skier with one leg, the blind man who climbs Mt Everest, the quadriplegic professional singer, the beautiful female doctor who was born without lower leg bones, (she gave a TED talk this year). In other words the Michael Miltons of the world.

2. People who are accepted and welcomed. People who have full intellectual capacity, are articulate and have some physical disability and who use a wheel chair. They may hold positions of influence and/or power. They might run companies or organisations.

3. People who are accepted. People who have full intellectual capacity but might use technology or signing to communicate; speech machine, computer, iPad.

4. People who are reservedly accepted. People who have a mild intellectual disability but who can work, converse, sit at a table and feed themselves, catch a bus, form friendships, speak for themselves.

5. People who are not accepted and might be avoided, shunned, ignored. The more intellectually disabled a person is, the more of a pariah they are. From this point on PWD become more marginalised depending on how many of the following added disabilities they have:

a. Communicate in ways other than speech (“Oh they don’t speak and so they don’t communicate.”) b. Have no receptive language c. Are doubly incontinent so they need personal care every day and forever d. Do not know how to have a reciprocal relationship with a person and cannot form friendships e. Drool or dribble f. Speak unintelligibly g. Wave their arms, legs and heads around in unpredictable and unattractive ways h. Make unconventional noises i. Need feeding

Let me be clear. I do not adore this woman. But she has articulated what she feels and what many others feel about the way exceptionally disadvantaged people with disability are viewed by the rest of the world. And in many regards, she is right.

Here's the rub - it's not that uncomplicated.

What if the quadruplegic professional singer, so uncomplicated from the outside, shares the same issues with service coordination and funding as the person with a severe and profound intellectual disability? And how included can that person be in the world if they cannot leave their home, or live in an institution?

Why is a person with a 'mild intellectual disability' more advantaged because they are 'reservedly accepted'? They are more likely to be victims of financial abuse, homelessless or be unsupported, mostly because they are not 'disabled enough'. Conversely, why should a person with a mild intellectual disability not be an elite sportsman, display extraordinary feats of perseverance and endurance, climb Mt Everest?

What if you have a 'voice', but you're so scared of losing what you have, you're afraid to use it? What happens if you have been marginalised or abused or neglected or institutionalised all your life, and you still bear the scars?

What if any one of the above 'groups' of people are also affected by a debilitating psychosocial disability? Unrecognised or untreated because you do not fit into the right 'group', or that you're homeless or have drug and alcohol issues or that you're the wrong colour or religion. What happens if any one of us can't be supported in the right way to be who we are?

Why are we all regarded so differently?

A friend talks about the disabled as 'my people'. I understand why. We have nothing in common when it comes to personality or ability or family support or world views or colour or spirituality - but we face the same barriers when it comes to be being included, societal and attitudinal barriers, ableism, poverty, barriers caused by other types of disadvantage.

I watched my friend sobbing and thought about that generosity of spirit and expression, and how we can use that to our advantage. We need to understand each other more fully, all of us. You can't be kind to someone if you don't understand them.

I straddle both sides of the fence, as a caregiver and a person with a disability, and it is a complicated place to be.

For me, this the most complicated argument.

When an disabled advocate speaks about the closure of institutions, I see some parents bristle and spit. The disabled person might be saying, 'This is my experience - I lived in an institution, and it was not a good thing. There is research that says that it is a bad thing for people with disability to live together.'

But those particular parents hear only, 'I do not understand your crisis and your pain.

I have lofty ideals and I am trying to inflict them on your child, who is nothing like me.

I do not understand your world, nor do I care to.

I do not understand that you cannot do this anymore, that you are living in crisis.

I do not understand that you are riddled with guilt as well as grief and anger, because the best you can do is never going to be good enough, just because your child is disabled.

I do not see or understand your fear and constant worry that you will die before your child and that they would be 'better off dead'.

I do not know that you sometimes resent your child or your circumstance in your heart of hearts, that it is as much as you can do to keep your child nourished and hydrated and safe and clean, and that happiness is way, way down the end of the ladder - and I do not see your love.

I do not understand that you are trying your hardest.

I cannot possibly know or understand you - I am the enemy.'

What we need to do is learn to listen to people properly and be generous with our stories and bridge that divide by shared understanding. And I'm not sure how that will happen.

I will keep my 'verbal disabled' badge, because I earned it. We need to continue talking, no matter what. And we're not going to make change if we don't.

Friday, November 15, 2013

Is This The Way We Treat Children With Disability?

I'm a Scout leader, and at the beginning of this year, I spent three weeks in a tent in Queensland.

It's not entirely easy going, living in a tent. Dirt and wheelchairs don't love each other. You can't sleep much past five am, certainly not in the summer, because the heat and humidity is untenable. Three weeks was a pretty long time - and most of my time was spent in an air conditioned office with access to amenities.

That's why I read this story with abject horror.

We want to do 'what' to a four year old severely disabled child?

This is a photo of Nauru, where this child will be sent for offshore processing. Aid agencies describe the conditions as 'deplorable'.

As an Australian, I am wholly ashamed that we treat our disabled citizens so poorly. But imagine the outrage we would feel if our government response for accommodation of OUR children were in these conditions?

I look at the picture above, and it reminds me of a 1940s prison army camp.

Do something. Now. It will take only a few minutes of your time. Write to your newspaper. Write to Scott Morrison at or tweet him at @ScottMorrisonMP. But do something, if you can.

We are all diminished as Australians by such barbaric acts of cruelty. It must make our resolve even stronger to keep fighting for justice together. - Asylum Seeker Resource Centre

Monday, November 11, 2013

All The Small Things

It's the Small Things that matter.

This week, we've been having great big discussions about things that push people's buttons. Those big picture issues - institutions and sheltered workshops and special schools and who is allowed to speak on another person's behalf. The issues that make people rage and burn and spit and report other people's innocuous photos for pornography breaches to Facebook (although my topless son DOES have weird nipples).

I had to stop and take a break then, because a Small Thing just happened.

My daughter rang to tell me to ring Suzie at Qantas with my wheelchair height. Her number is 0282222651. The reason my daughter rang me is that one day, a disability agency booked a flight for me and they took my next of kin details and put it down as a contact detail. Shaye lives in the city, two hours away, and wouldn't have the faintest idea when and where I am flying somewhere. Why did they list her as a contact? Because the agency 'didn't know whether I could speak'.

The Small Things.

Another Small Thing, a few months ago, that annoyed me inordinately. A perfectly nice woman was asking me if I would like a Danish. We were at a person centred planning PD, and I refused nicely, telling her I wasn't too hungry and besides, I don't love pastries. They're too flaky.

'Oh!' she said cheerily. 'I have just the thing!' And she pulled out a single gluten free muffin, wrapped neatly on a plate, reserved for someone who couldn't attend.

No thanks, I told her. I didn't tell her why I didn't want it. I hate gluten free bread and cake products. They usually taste, as the kids would say, 'like arse'. I refused politely, even when she insisted. I smiled and turned around to talk to someone else.

When I got back to the table, there was the gluten free muffin, wrapped and smiling at me from my table. I looked over, and the perfectly nice woman was beaming at me with a motherly smile.

I wanted to throw it at her head.

The Small Things. They make you feel bad, because I don't want to throw muffins at people. I really like this woman. I didn't want to laboriously explain the story to Suzie, who was embarrassed on my behalf. I'm flying out in the morning and I'm hoping that the day will be filled with Small Things that are positive, not Small Things that make me want to hurl muffins and rage against the world.

All the Small Things.

Sunday, November 10, 2013

Ishekomborera Africa

Reading Glee's blog post about institutions this morning made me think about apartheid.

You may or may not know that I lived in Africa. Post independence, in Zimbabwe - I was such an awful teenager that my mother packed me unceremoniously off to live with my godmother on a cotton farm in Shamva. True story.

I was fourteen years old.

Okay, the picture is hilarious. Let's just get the embarrassment out of the way. Yes, I had a mullet. I had sewn the oh-so-stylish pink dress that I am wearing, and I was on my way to church. It was 1983.

I had absolutely no experience with racial discrimination. I lived in Thornlie, south of the river in WA - a boringly average suburb filled with mostly middle class white people and a few migrants. My best friend in primary school was Malaysian, and the progressive private school I attended was a bit of a melting pot of cultures. So when I landed at Harare airport and looked out the window at a sea of black faces, it was a bit of a culture shock.

My godparents, Joan and Geoff - that's Joan in the picture - ran a cotton farm a few hours out of Harare. They lived in a big mudbrick house on the hill, and had two 'garden boys' and a 'house boy'. Not a large pool of servants, by Zimbabwean farming standards - but for a middle class white girl, the idea of having servants - people who were in your house, doing the work you should be doing - was a little mind boggling. The farm workers and servants lived in rondavels, round, thatched huts down in a 'compound'.

Are you getting the picture? The first day I woke up and looked out the window, my mind went into overload. Women with bare breasts and babies on their backs, colourful skirts and pots on their heads - National Geographic stuff.

That was nothing compared to my first term at school. We weren't particularly wealthy, so I attended a public boarding school, Roosevelt. And that is where my introduction to racial discrimination began.

It took a while. The few white girls at the school readily accepted me as their own, but the black girls were scarily aloof. This was only a few years post independence - four years, so the memory of terrorism and war was fresh in everyone's minds. As was the theme of power and control - the power had been wrested out of the hands of the whites by the masses and things were oh so different.

So imagine this. Samantha, in her maroon and turquoise striped blazer, complete with straw boater - clueless about racial undertones and struggling immensely with O level African geography and the Shona language.

I didn't even know why the white girls wouldn't sing the National Anthem. I didn't know that after independence, in 1980, the Anthem had changed to Ishekomborera Africa - the white girls mouthed the words, a mutinous expression on their faces. One girl was pulled up severely for playing 'Rise O Voices of Rhodesia' (the former anthem) on the piano - she got away with it, because the tune is also 'Ode to Joy'. But I didn't know about the history of the 'struggle', and sang along with great gusto -

Ngaisimudzirwe zita rayo

Inzwai miteuro yedu

Ishe komborera,

Isu, mhuri yayo.

Huya mweya

Huya mweya komborera

(repeat previous two lines)

Huya mweya

Huya mweya woutsvene

Uti komborere

Isu mhuri yayo.

There was racism on both sides. Most of the black girls refused to speak with the white girls - some actively bullied them. I made a very good friend (I miss you, Memory Mutaratigwa) and was consequently 'defriended' by some white girls I knew. It was all very strange.

Later, my mother moved me to a school which was then predominantly white, Arundel School. People were more openly racist there, and the few black girls were from privileged families.

Every time someone made a racist comment, the words fell on my ears with a jarring note. Even when they weren't intended to be racist.

'You'll have to peel the mangoes, Samantha. Notis (the house boy) can't do it - their hands sweat more than ours do.'

'You can't go down to the compound to play with the African children - they are different from us.' (And for hours and hours, we would sit outside our big house on the hill and beat a monkey skin drum, waiting for the drummed response from the children who were so different than we were.)

'Tsatse has cut his knee badly on the lawnmower - we will put him in the back of the ute and take him to the African hospital.' (The hospital, it turned out, was a thatched open air hut in a field. Tsatse almost bled to death on the trip in.)

In history, we learned about the inequalities that existed in South Africa. Apartheid is racial segregation - here are the things I learned.

The Prohibition of Mixed Marriages Act of 1949 prohibited marriage between persons of different races, and the Immorality Act of 1950 made sexual relations with a person of a different race a criminal offence.

Under the Reservation of Separate Amenities Act of 1953, municipal grounds could be reserved for a particular race, creating, among other things, separate beaches, buses, hospitals, schools and universities.

The first grand apartheid law was the Population Registration Act of 1950, which formalised racial classification and introduced an identity card for all persons over the age of eighteen, specifying their racial group. Official teams or Boards were established to come to an ultimate conclusion on those people whose race was unclear.

Education was segregated by means of the 1953 Bantu Education Act, which crafted a separate system of education for African students and was designed to prepare black people for lives as a labouring class.

The Bantu Authorities Act of 1951 created separate government structures for black and white citizens and was the first piece of legislation established to support the government's plan of separate development in the Bantustans.

I read Glee's blog and started thinking about apartheid and disability.

Do we have an apartheid system for people with disability in Australia?

Segregated schools - tick, crafting a separate system of education for disabled students and designed to prepare disabled people for lives that will no doubt be significantly different from their non disabled counterparts.

Separate government structures for disabled and non-disabled citizens - tick. We have disability employment services, and people with disability who try to access many mainstream supports are promptly shunted off to the 'special' service down the road. They also experience significant disadvantage under some of those 'special arrangements' - the discriminatory BSWAT test, for example, which means that employees can be paid as little as $1.75 an hour. Or the 'rules' that mean that you can't look for another job until you've quit the current one - our special systems aren't so special after all.

We segregate people by diagnosis and put them into institutions and nursing homes and create segregation and isolation everywhere you look. It makes us even more 'special'. Let's lick the windows on the special yellow school bus, let's sterilise our girls so that they cannot breed, let's lock up people without charge for decades. We even have special toilets.

I knew, when I heard the language of segregation, that racism is wrong. I know that the same is true for people with disability.

It took til 1994 for apartheid to be completely abolished in South Africa, long after the commencement of protests and affirmative action against injustice. I wonder how long it will take our peoples to abolish segregation. A hard fight, because we're not even all on the same side.

It always seems impossible - until it's done.

- Nelson Mandela

Saturday, November 9, 2013

Who cares about a third world tragedy?

10,000 people - a conservative estimate - die in a typhoon in the Philippines, and another million lie in the direct path in Vietnam.

You'd think it would be the breaking news story. But no - the breaking news story starts off 'Tony Abbott says Australia will beat people-smugglers...'

I'm wondering why it is not important that 10,000 human lives were lost. During 911, there were 3,000 Americans (and people from other countries) killed. America is about three times as far away as the Philippines. But twelve years later, we still have documentaries and memorials and televised stories about a tragedy in America

Think it's different because it was an act of war? I don't think so. Hurricane Katrina was eight years ago, and everyone remembers the name. 1836 people died in that tragedy. It is embedded in our consciousness - the name Katrina invokes a memory of a hurricane, the word 911 invokes not an emergency phone number but an act of terrorism

You could argue that the media plays an important part in how we react to tragedies and loss of human life. Granted - the powerful images of the planes crashing into the Twin Towers will stay with most people forever. I doubt the Philippines have Fox or CNN. But I think there is a reason we don't care as much about tragedies in third world countries - the people who died are not predominantly white, middle class, first world citizens. They are not 'us'. They are 'them'.

I'm not sure what that says about us, as a civilised nation. But it mirrors the experience of other people who live with disadvantage and who are significantly different. We are the 'them' in your lives - you can assuage your conscience by throwing a few dollars into a tin, or watching footage of those inspirational Paralympians (not so much the Special Olympics, they are more 'them' than 'us') or being nice to a disabled person. But until we are 'us and us', not 'them and us' - the disabled, the different, the dead in a devastated country - things aren't going to get a lot better.

“Unless someone like you cares a whole awful lot, Nothing is going to get better. It's not.”

― Dr. Seuss, The Lorax

Friday, November 8, 2013

On Bowling and White Vans and Words (oh my)

Here is a picture of a girl I know. Her name is Sammi.

Now, think carefully before you answer. What is Sammi doing?

You answered 'bowling', right?

Well, in this case, you are right.

But if Sammi had a disability, you might have been wrong.

In the language of the service sector, you can't just go bowling.

Sammi would be at an 'activity' - she'd probably get there in a white van, with a bunch of other people with disability (and some support workers, who may or may not be wearing polo shirts). It's gotten to be a bit of a joke in the disability sector, hilariously portrayed by Peter Leidy here in a song called 'Three Days A Week'.

So if Sammi isn't bowling, what is she doing?

She's keeping occupied and stimulated, in order to improve her quality of life.

She is engaging in a shared opportunity for fun and playfulness.

She is participating in an activity that encourages independence, social inclusion, communication or expression of feelings.

She is maintaining her physical fitness, and developing skills and independence.

She is increasing her social interactions in the community and reducing isolation.

She is participating in a shared activity, which can promote a sense of belonging.

In this photograph, taken on my son's 20th birthday, Sammi was about 18. As a person without a disability, she might go bowling five times a year.

If she was a person with a disability, she might go bowling every Thursday for the rest of her life.

That's not a normal state of affairs. And neither is the language of the social service system.

I read this marvellous blog about why the language of the social care system makes disabled people's lives sound even less "normal" than they are. It's written by the father of a guy named Stephen.

1. I live in my home. Steven's current placement is in the family home.

2. When I make a pizza, I'm making a pizza. When Steven makes a pizza, he's increasing his independence skills (as overseen by an occupational therapist).

3. If I cry, I'm sad about something. If Steven cries, it is logged and analysed by the psychologist and positive behaviour team.

4. If I shout or swear, I'm angry about something. If Steven shouts or swears, it is challenging behaviour and new behaviour management plans need to be drawn up.

5. If I choose between steak or fish for my tea, I'm making a choice. If Steven chooses either steak or fish for his tea, he is being empowered.

6. I have friends. Steven has a circle of support and influence.

7. If I'm asked what I want to do with my free time, I'm planning my hobbies. If Steven is asked what he wants to do with his free time, it's his person-centred plan.

8. If I make an unwise choice, I've messed up. If Steven makes an unwise choice he may be lacking mental capacity.

9. If I sort my CDs into alphabetical order, I'm being a bit anal. If Steven sorts his Mr Bean DVDs into colour order, he is being inappropriately obsessive.

10. If I eat two Mars bars, I'm being a pig. If Steven eats two Mars bars, he is challenging boundaries.

Holy crap, he's right.

Wouldn't it be an interesting state of affairs if we applied service language to every aspect of our own lives?

Samantha (Ms 46, LGMD2i) will have marital relations on Thursday between 2030 hrs and 2230 hrs. She will be sexually active with a partner of her choice (husband, in the marital bed). The outcome will be mutual pleasuring and a possible orgasm. Her husband will be responsible for changing the sheets if there is a damp spot left. To be evaluated in three months time (and consideration given to the implementation of assistive technology during her person-centred planning session)

I'm very bored with the idea that 'choice and control' looks like a menu of choices.

I'm over employment services that keep people employed for 30 or 40 or 60 years instead of the 3.2 year old median, and call it a good thing.

I'm tired of service language and plans that don't mean anything.

Isn't it about time we reclaimed our power and did what other people do - exactly what they want?

Our Way

(to the song My Way, new lyrics by P. Leidy)

And now my time is here, I have a plan, I have a vision

They called the shots for years, the ones in charge made my decisions

They ran my life for me, and may I say, not in a fair way

But more, much more than this, I did it their way

Control, I had a bit, but not enough to really mention

And so, I will admit I did some things that got attention

You would too if each time you needed a ramp you found a stairway

But then you’d learn again to do it their way

Yeah, that was their way, they had control

I tried to say, Hey! I don’t like to bowl

I was their case, I was their client

I was embraced when I was compliant

I acquiesced, they were impressed, I did it their way

And then there came a time, my confidence was growing stronger

My life was gonna change, I wouldn’t take it any longer

I did what I had to do, and sometimes did it in a sly way

But now, I’ll show them how I’ll do it my way

And here, it’s pretty clear that now we face a brand new hour

We have a course to steer, we’re taking part and taking power

There’s hard work still to do, and I won’t do it in a shy way

Oh no, oh no not me, I’ll do it my way

And so my friends, let’s make the call

Let’s take the wheel, let’s take the ball

People we trust, our dreams they share

They’ll stand by us, they will be there

We’ll build our lives and we will thrive –

We’ll do it our way

Thursday, November 7, 2013

Square Pegs and Round Holes

My sometimes job is a project called the Disability Clothesline. It's an idea I nicked from NZ - a simple arts project where people with disability create a 'story' on a teeshirt, and where our 'laundry' is hung out for everyone to see. The idea is to end the silence around violence and abuse against people with disability. You can read about it here.

The other part of the project is a Facebook page, where stories about violence and abuse and neglect are routinely collected, shared and discussed. It's a gruelling task. I trawl through the Coroner's inquests and drag stories of systemic neglect and abuse into the daylight. A three or four hour stint can leave me blinking, horrified at the black-and-white accounts of murders and abuses that almost never make the news headlines. Why would they? After all, it was only a person with a disability.

Story after story, horror painted upon horror.

Murders by parents and deaths from institutional neglect are painted as administrative errors or acts of mercy - the very worst are those where there is a combination of a failure to cope, a failure to care and a feeling that death - even starving your disabled daughter to death - is preferable to relinquishment.

I collect these stories, one by one, stuffing them into my killing jar, determining whether they are butterfly or moth, cataloguing them onto a spreadsheet. But it's only when they are spread out side by side that you can see the patterns - patterns of systemic failure, of abuses that should never have happened, of failures that are labelled 'avoidable' and 'unfortunate'.

Rowan's story stayed in my mind longer than the other broken butterflies - Rowan was only eighteen years old when he killed himself at a place called 'The Beach House'. If you have the belly for it, you can read his story here. I'll leave it to you to read about his anguished parents desperately trying to keep Rowan alive. Rowan had Asperger's Syndrome - with an IQ in the high ranges, he wasn't 'disabled' enough for the right kind of help. His mental health issues meant that he didn't fit neatly into a disability box, and his disability meant that he didn't fit neatly into a mental health box. The Coroner's Inquest sets it all out in black and white - Rowan's parents chasing him through traffic, preventing him from stabbing himself in the stomach. Trying over and over to admit him to hospital, not knowing that his patient file was clearly labelled 'no benefit can be gained through inpatient hospitalisation'. Trying desperately, once the first flurry of early intervention was over, to recover their boy, who had loved Egyptology and the Titanic. And Rowan's is only one of many, many others.

Here's the thing - the stories are all different, but they are all the same. People don't fit into neatly shaped boxes - if you try to hammer a square peg into a round hole, you're going to knock the corners off.

Rowan certainly had his corners knocked off. Tired of fighting, sick of trying to fit into a societal hole he just didn't think he measured up to, he hanged himself from a sock suspended from a door handle on 21 April 2006. We only know his story because he was detained pursuant to an order of the Guardianship Board - the other Rowans are buried silently, mourned only by their families, soon forgotten.

In disability services, we put great weight on a 'person-centred' approach, the most bastardised term of this decade. It's come to mean 'having a plan' or your own file in a dusty filing cabinet, rather than meaning an individualised approach. We don't take society's square pegs and carefully measure them up, much less craft an equally shaped system response that will allow for a good fit without permanent damage.

Rowan was put into care, where he would be 'safe'. He was 'placed' into a facility with another young man, who he didn't get along with; hammered into compliance with a series of badly designed service responses, carried out by poorly trained staff. On the day that Rowan died, his caregiver had turned off the alarm so he could sleep a little longer.

We need to forget our ideas of models, because there is no model. We need to rethink our approach to the idea of individualised approaches, because words mean nothing unless backed up by actions. And we need to keep the names of those who have fallen upon our lips in the same way we do our fallen soldiers - embedded in our memories, engraved somewhere else other than upon their tombstones, to remind to stop failing - and killing - people with disability.

An Incident Report, written by Rowan Wheaton to staff members at the Beach House, 17 March 2006, a month before his death -

Friday, late afternoon and early evening we were figuring out what to have for dinner. We decided to have a meat and vegetable pie. Alex decided he was going to cook the pie still concealed in its box. I told Alex that he couldn't cook it that way and he wouldn't listen. I kept telling Alex that it wasn't safe but he refused to take it out. So I took the box out of the microwave and I tried to open the box and take the pie out. Alex grabbed the box and tried to take it from me, kept telling me to let go of the box. I kept telling him that it wasn't safe but Alex wouldn't listen. I saw on TV a show called Brainiack, on the show they did an experiment that showed a can of baked beans being put as it is without opening it and the microwave being turned on for a couple of minutes. The microwave blew up, spraying lots of baked beans everywhere. Veronica stood in and said "both of you go to your rooms". Alex stamped of to his room, but I refused to go to my room. I tried to explain to Veronica that what Alex was doing was against his own safety and that I was trying to prove that I was right, but Veronica wouldn't listen. She kept to telling me that I wouldn't appreciated it if Alex tried to tell me what to do and that I couldn't tell Alex what to do either. I pointed out to her that wasn't the point, but she still wouldn't listen. I was really pissed off, and livid, and frustrated because I wasn't being listened to, Alex could have blown himself up (and microwave) or set the house on fire. Knowing that I wouldn't be listened to by Veronica, s he didn't even ask what was going on by the way, I wanted to get the pressure off my back, so I turned around and ran out of the house. I knew Veronica would call the Police, but I didn't care. After walking endlessly along the beach for a few minutes, I decided to turn around and go back. After I got back to the house and had dinner, Veronica called the Police and told them that I had returned.

On Sunday in the late afternoon, Veronica had a discussion with me. She told me she wanted an apology and explained that I was wrong and that I grabbed the box from Alex and said that I considered myself to be right all the time. I was absolutely livid. I couldn't believe what I was hearing, so I started raising my voice, and as Veronica kept at her point less explanation, I started shouting, and calling her swear words. So I turned around and ran out of the house, Veronica called the Police again, and when I got back Veronica told me that she rang the Police and asked them to come and have a talk with me.

The Police told me that it was not only Southern Junction Community Services (SJCS) policy that I was not allowed to shout and swear at staff but also that it was law not to shout and swear at anybody. I knew it was pointless trying to get through to anybody. So I went to bed without dinner, Veronica removed the TV and the hired videos from the TV room as punishment for speaking to her inappropriately. I knew no one would listen apart form my parents. I thought it was ironic that such a person would ever punish everyone instead of asking what had happen and trying to work out who the culprit was, she did not care.

I want you to do something about this little issue that has grown to a bigger more complex situation. If you agree with me, if you understand I would like you to make it rule that if such a situation ever arises again that the staff not punish both but ask what happened and judge who is incorrect. I would also like you to, if it is not too much trouble, talk to Veronica about the situation, although I wouldn't mind having a discussion with you first just to get my side of the story. I suggest you tell Veronica to judge us evenly next time rather than punish us first.

Yours sincerely, Rowan Wheaton.

Wednesday, November 6, 2013

Sorry - Gotta Catch Em All

“Would 'sorry' have made any difference? Does it ever? It's just a word. One word against a thousand actions.”

― Sarah Ockler, Bittersweet

In Australia, Sorry Day is an annual event to remember and commemorate the mistreatment of the continent's indigenous population. The Australian government's most controversial policies resulted in an entire 'Stolen Generation' - Aboriginal children separated, often forcibly, from their families of origin in the interest of turning them into white Australians.

I'm thoroughly sick and tired of the word 'sorry'. I can't begin to imagine how Aboriginal people feel about it - not about Sorry Day itself, but about the meaningless apologies that the disadvantaged receive every day.

'I'm sorry that we removed your grandmother from her family two generations ago and told her she could never see her family again or use her language or keep her identity or live at home instead of out on a mission way out at Mogumber' might be an appropriate response, but 'I'm sorry that we will not let you go to your mother's funeral' or 'I'm sorry that we will not give you a job' is not. I was proud of our country when we delivered the National Apology - not so much when discrimination against Aboriginal people continued on a daily basis - will we be apologising for the Northern Territory Intervention fifty years from now?

That got me thinking about disability and the word 'sorry'.

I have a cool game that I play when I go to Carousel Shopping Centre.

I enter the store, and the clock starts ticking. I start counting how many people say 'sorry' to me.

Some leap out of my way, even if they are a metre or more away, muttering 'sorry', red faced. I'm never quite sure whether they're apologising for being in my way or whether they're apologising because I'm disabled. My record is 23 'sorries' over the course of an hour.

I'm collecting 'sorries' like Pokemon cards.

'Sorry, we cannot provide an accessible toilet for you in your workplace.'

'Sorry, you cannot visit this restaurant - it has steps.'

'Sorry about the wait - although you fly regularly, we have a new pilot today and he really wants to make sure your wheelchair is safe to fly. Just wait here at the front of the queue.'

'Sorry about the lift breakdown.'

'Sorry - you are different from other people, and it is a huge inconvenience having to accommodate you, even though you are a paying customer.' And the apology never reaches their eyes.

I'm not even exceptionally disadvantaged. If we disabled people collectively made the 'Sorry Pokemon' card collection, it would look something like this.

'Sorry that we will not employ you.

Sorry that we will not let you in.

Sorry that we will not educate you.

Sorry that we will lock you up in a prison, without charge, for ten years.

Sorry that we will fail to support or protect you.

Sorry that we will not allow you to testify in a court of law.

Sorry that we will paint your rape or murder as an administrative error or an act of mercy.'

I don't want a National Sorry Day for People with Disability. I want change. I want people to stop discriminating against people. I want our Pokemon collection of Sorry Cards to be as irrelevant as Pokemon is today (and as collectable).

“one thing I don’t need is any more apologies i got sorry greetin me at my front door you can keep yrs i don’t know what to do wit em they don’t open doors or bring the sun back they don’t make me happy or get a mornin paper didn’t nobody stop usin my tears to wash cars cuz a sorry.” ― Ntozake Shange, for colored girls who have considered suicide/when the rainbow is enuf

Tuesday, November 5, 2013

Kiss My Disabled Ass, Sephora

I've never posted this picture of my bolshy ass in a public forum, but I can't think of a more appropriate occasion than Sephora launching a Kat Von D lipstick in the shade 'Celebutard'.

In the words of Down Syndrome Uprising -

'Kat Von D seems to think it's okay to use a MINORITY SLUR and Sephora backs her up on this.

It does not seem to be clear that words 'retard', 'retarded', 'fucktard', 'tard', and 'celebutard' and all similar permutations are SLURS, the use of which signifies ignorance, disrespect, and sometimes malice.

If we as a society even 'look away' we are condoning inequality as well as lack of respect. It is not hard to err on the side of respect towards a huge group of people, a large minority.

Let's tell Sephora that they were perhaps ignorant, but since they are now aware of what the word signifies and what it means in a minority's struggle towards acceptance, inclusion, and equality, they are in fact condoning an oppressive practice. Every time a slur is accepted in use it will potentially reinforce an already unequal frame of thinking, or worse yet, shape a virgin mindset.

Words have power, let's use ours.'

At the end of the day, Kat Von D says, it's just a f*cking lipstick.

No, it's not.

It's a message to the rest of the world that it's okay to use hate speech against people with disability.

If you want to express your concern and outrage, sign Dave Hingsburger's petition here.

UPDATE - Success! From Sephora - 'We are deeply sorry that the name of this lipstick has caused offense, and we will be ceasing the sale of this shade both in our stores and online.' Viva le power of the people.

I think I might go and buy a lipstick from Sephora for the first time in my life - speedy and appropriate response.

Behind the Ha Ha Walls

Funny name, a Ha Ha wall.

Not a funny concept.

Here's your learning for the day. One of the distinctive features of both Kew Asylum and Beechworth Asylum is the use of a variation on Ha-Ha walls around the patients courtyards. These ha-has consisted of a trench, one side of which was vertical and faced with stone or bricks, the other side sloped and turfed. From the inside, the walls presented a tall face to patients, preventing them from escaping, while from outside, the walls looked low so as not to suggest imprisonment.

Supposedly, we got rid of the Ha Ha walls when we decommissioned the asylums. But they're still there - man made structures that are insurmountable from the inside. I'm talking about our man made prisons - institutions, sheltered workshops and 'special things for special people'.

In late 2012, two intellectually and physically disabled men, Gordon Prior and Michael Nojin, successfully scaled the Ha Ha walls and sued the government for discrimination, successfully arguing that they were discriminated against because of the test that is used to assess their competency and productivity to determine their pay. Both filed claims in the Federal Court in February 2009 alleging unlawful discrimination under the Disability Discrimination Act 1992. Victoria-based Prior is legally blind and has a mild-to-moderate intellectual disability. Stawell Intertwine Services Inc, an Australian Disability Enterprise (ADE), employed him on less than $3 an hour to maintain gardens. NSW-based Nojin has cerebral palsy, a moderate intellectual disability and epilepsy. He earned $1.85 an hour destroying documents for ADE Coffs Harbour Challenge Inc.

Ha ha. Joke's back on you. Nojin and Prior, who didn't seek any financial compensation for back pay, climbed over that wall and left the ladder there - 20,000 others waited behind, ready to climb out.

Unfortunately, the business of entrapment and discrimination is a lucrative one. FaHCSIA spent no time appealing, and asked for an exemption, effectively standing in front of the ladder and asking people not to climb it for another five years.

You can read what some of the disability sector thought about that here. The appeal continues.

There are too many Ha Ha walls in existence today. I listened to a man from Activ at a conference, telling us proudly that the sheltered workshop employees worked in a partnership with Kmart to bring the prices down for the Kmart shoppers. Sea containers are unpacked and shoes paired and products wrapped. There's even a little write up in the Activ newsletter.

'On 23 June 2012, the Activ Business Services supported employees and support staff working at Kmart Canning Vale were presented with Kmart safety awards. Activ CEO, Tony Vis was on hand to assist Activ Manager, Bill Chrystal and Kmart’s Bill McGuillan in presenting certificates and gift vouchers at a special morning tea. “Activ working with Kmart is a great business success story,” Bill Chrystal said. Over the past year, the work has grown from two to six teams, made up of 36 Activ supported employees and six Activ staff to supervise. Given this growth, they are now all based at Kmart Canning Vale where they work alongside Kmart staff at the warehouse. Activ Transport does a bus run to and from the warehouse. The work involves unpacking a range of apparel which arrives at the warehouse in boxes.

Activ people remove the plastic wrapping and put the stock into crates, ready to take to Kmart stores. This unpacking makes it much easier for Kmart store staff to access the apparel and keep the store shelves well stocked with different sizes and ample quantities, available for customers to purchase.

The Kmart safety award was a great opportunity for Kmart to show their appreciation for the hard work and dedication to safety that Activ people have displayed while working at the Canning Vale facility. Kmart officials said the safety award was one way they can celebrate and publicise nationally the fantastic working relationship Kmart WA has with Activ. They are keen to use Perth as the ‘best practice model’ for Kmart to engage other Australian Disability Enterprises like Activ in other parts of Australia. Due to this success, Kmart have also nominated Activ for another award, which is an annual award called the K Award. This is presented to a community organisation which has set up a successful Business Partnership with Kmart.'

I have known many people without disability who are not particularly productive workers. Those in the public service - ineffectual politicians, mainstream employees. I cannot imagine how the world would howl if they decided to introduce a competency and productivity scaling test - perhaps it would be a good thing, keeping only the performers. The people playing the 'Devil's Advocate' will argue what happens to the 20,000 who scale the wall. Will they be supported to access mainstream employment on the other side of the wall? Will they want to scale the wall in the first place? And will they be encouraged and supported to climb the ladder, given that it leads the way to uncertainty?

Ha ha. Joke's on us. But Mr Nojin and Mr Prior, I salute you. You have done more for human rights than any other two individuals in recent Australian history - and you did it from behind the walls.

Monday, November 4, 2013

Neil is Everywhere - But Nobody Knows His Name

Meet Neil.

Okay, I don't know his name. I call him Neil, but I should call him Eddie Everywhere - at some point, this young man posed for a set of stock art photographs, and consequently his image is EVERYWHERE. It's on flyers and brochures and websites and leaflets and in online advertising.

The reason I'm fascinated by Neil is that he has become, inadvertently, the 'face of Down Syndrome'. Without even trying. He is probably sixty by now, or dead. I look at his image and wonder if he was paid the same as other models, if he gave permission, if he was employed in a business role or knew how to use a computer or was just dressed up for a photo shoot. I wonder if he had a career as a model, or if his mother knew the photographer. And I wonder if the intention was to represent a businessman - because his image is catalogued under 'Down Syndrome' and 'disability', but not 'office' or 'businessman'.

Don't get me wrong - I like that Neil is portrayed as a regular guy in an office. Let's forget that have filed him tidily away into a disability category. But when I crank his image into Google Image Search - to find images that are visually similar - I find that Neil's photograph is used only by disability organisations or in disability related websites. Nowhere does Neil appear in a 'business' sense, or as a visual representative of an office worker. A beautiful example of seeing the disability rather than the person - or their role.

I'd like to find Neil. The photographer for the stock shoot is George Doyle and I've emailed to ask them the model's name. I want to learn Neil's story and his name, and find out more about him.

Neil is everywhere, but nobody knows his name. It says something about people with disability, doesn't it?

Sunday, November 3, 2013

Twenty Six Years

I'll start with an apology to Shaye, who hates anyone taking or using her photo, and an instruction. You are the most beautiful girl alive, so it's about time you embraced that, friend. Embrace :D

Nobody gets knocked up at eighteen any more.

Well, maybe in very small country towns. Like any eighteen year old mother, I was pretty surprised to discover that we were going to have a baby. Unlike a lot of eighteen year old mothers, I was thrilled. Peter and I had been living together for a while and we were in a committed relationship. And we were both genuinely thrilled - although we had no intention of getting married, I changed my name by deed poll so that the baby wouldn't have a different surname from her dad. I started sewing - yes, hard to believe, isn't it? - and making tiny cross stitch gumnut baby things. Pretty clucky, all in all.

And so the most adored child in the world was born. Shaye Louise Connor, named for my friend Louise who had died just over a year before - she was born on the 4th of November, 1987. For the first nine months, her feet never hit the ground - she was a colicky baby who screamed pretty much full time, but she was equally adored. We didn't have any parenting experience, of course; Shaye was carried to the beach and to the pub and hip-carted everywhere any other young people would go. She had a playmate, Shane, who was born a month before. We have lost (in a fire) most of the photographs and videos that we took of Shaye as a baby, but I remember how adorable she was during her dedication (we went for a non-christening in deference to our weirdly diverse spiritual backgrounds) - tiny white frock, gorgeous little girl who looked like she should be in a magazine modelling pretty babies.

Then Kiah was born. He was sick - for a long time. Shaye stepped into the big sister role and didn't hate her brother anywhere near as much as we'd thought she would. He was a placid baby and she adored him.

When she was eighteen months old, we bought a property in Toodyay and started building a house. We thought it would be a good place to bring up a child. I have many cute photographs of Shaye growing up - as more brothers and a sister were born, she looked after them and grew slightly bossy. Its hilarious now, that as an adult she can point and command and her much taller brothers will leap to do her bidding. Terrifying girl.

Eventually we got married, and Shaye was our flower girl.

Shaye grew up and grew marginally less terrifying. We were very proud of her when she started university - she graduated last year with a double degree in journalism and media studies. Still proud - she grew up without the benefits of a privileged life, and therefore learned to make her own way in the world. Shaye got a job at 14 at a roadhouse to pay for her own clothes (and sometimes school uniform)as we struggled to give her a great education on a tight budget - she worked her way through school then worked her way through university. Not an easy path to take, especially as a disadvantaged regional student. She's still working - she has a dedication and determination about her that others admire. There's no doubt that Shaye will get wherever she wants to go.

We watched the kid grow into a stunningly beautiful young woman with immaculate taste in clothes and fairly good taste in boyfriends (we love you, Dom). Shaye had a million friends 'back home' in the country, including, to our amusement, the 'footy boys' - like having a dozen big brothers.

I have a million photos of family events like this. Monopoly wars. You can't tell, but Shaye is cheating. Dom is playing fiercely against Jake, and on it goes. Interminably, with Shaye usually either spectacularly winning or going completely bankrupt.

We originally intended to call Shaye 'Skye', and she knows why we didn't :D I'm not the kind of mother who likes cheesy platitudes and Hallmark cards, but this quote has always embodied what we wanted for the Favourite Child.

What I wanted most for my daughter was that she be able to soar confidently in her own sky, whatever that may be.

-- Helen Claes

Twenty six years - we are very proud that you are soaring confidently, child of ours. Keep on flying <3

'That's what you get when you don't wear shoes.' Shaye Connor, 1991

This Is What Inclusion Looks Like

I love it when the stars collide.

As I write this post, there is a vigorous (and sometimes murderous) conversation going on about inclusion on my facebook wall.

An idea was touted by a frustrated parent to 'make a parent a hero for the day' by inviting a special needs kid over these holidays.

The idea was greeted with varying degrees of horror - do we have to pay people off to make them act like human beings?

'Put yourself in our place. Would you want someone to be made a "hero" cos they had a coffee with you? It is patronising and will not assist us to be seen as equal,' Glenda says.

(You can read about Glenda's thoughts about Ableism here - a thoroughly recommended read.)

But through the molotov cocktails, I could hear the anguish of people who are isolated by attitudes and geography and disadvantage and disability - we have that in common.

Rewind back to last night.

I went to a friend's house - her son had invited my son over for a sleepover and she was holding a Halloween celebration. I don't see her as much as I used to, primarily because I am using a wheelchair most of the time and her house is built on stilts in our rocky little town, Toodyay. It's harder to get up and down now, but I haven't said much - she lives in the house she lives in. Mine's not particularly accessible, either. But I have noticed that my circle of life is dwindling into smaller circles - a friend who lives down the road is now unvisited, because it is too hard to get into. I have bowed out of a few trips, overseas or to inaccessible restaurants or venues, because I don't want to inconvenience my friends. I'm not terribly distressed by it, but I'm aware of it. And aware that for people with increasing mobility challenges and no support, this means exactly the type of isolation we're talking about above.

I arrive at Su's house, and I see this.

Su's brother has started building a ramp - it's taken him all of two days so far, and he's never built one before. There was no discussion, by the way - Su just matter of factly announced that she had always wanted to build a ramp so that more friends who use wheelchairs can visit.

It's obviously something Su's whole family believes in, inclusion. No issues with my fifteen year old son sleeping over with her lad - no expectation that she would be branded a hero (or some kind of a martyr, or a fabulous person) because a child with a disability stayed over. Just two kids at each other's houses, the way it should be.

I got up this morning, and Su's dog fell asleep with its paw on my footplate and head under my front castor. We talked about friends and kids and life and pool and then I went home. And this, froods - this is what inclusion looks like.

Friday, November 1, 2013

Mind the Gap

I’ve never been more aware of the gap – really, a yawning chasm - between some areas of the disability sector as I am now.

Last week, I went to a disability sector event in Sydney. It was accessible – accessible to the point of hilarity, because it was at the Human Rights Commission. Graeme Innes and a bunch of other advocates have redeveloped the lift car system, and consequently the under educated and sighted now fumble blindly for a familiar system that is not there, queuing like Pavlov’s dogs and wondering why the lift is speaking to us.

There were a lot of disabled people there – and apart from a dearth of accessible toilets, everything seemed to go pretty smoothly. We worked together on a national plan against violence, people mostly had insightful and articulate contributions and there was a real sense of community and commonality shared by most of the attendees.

The highlight for me was at the end – where people rejected what had been foisted upon them (a refusal by government to acknowledge and address the issues around abuse in institutions) and determined to change it.

Then I came back to Perth, and attended an old school parent group AGM. And there was the gap.

I think there is always good ‘intent’ in these groups, especially the charity and medical groups. But the power balances were apparent – many ‘important people’ in suits and women coiffed to within an inch of their lives, talking about ways they could do things to and for people. The old medical model has never been so alive – it was even held in an old hospital, not a popular choice for the one wheelchair user who spent a very long time parking and struggling up an almost vertical ramp. And the tension was almost palpable – people clutching to retain the power that they think is theirs.

The gap was that the first event was about people with disability, and that people with disability were actively involved in redressing an imbalance of power, looking at a circumstance and saying ‘No, this will not do. This is not what our lives look like, and we refute what you are trying to inflict on us. We take our power back.’

The second event was about parents of children with disability, but the parents who had built this old organisation were largely absent – too old, too tired or too dead to continue battling. The parents involved were able only to observe or be peripherally involved whilst the power brokers maintained the status quo. The attitude of many of the members is ‘I will smile and be grateful, because you know what is best for me and my family. I will be thankful for whatever power you give me in determining my own life and that of my family members, because I have been helpless for a long time.’ And there was the gap.

It’s truly astonishing how we let these power imbalances occur.

People with disability and their families have this in common – we are the experts in our own lives. That is not what the medical model tells us, and so the issues remain. Issues like daily imbalances of power and situations where power and control cause chaos in our lives.

It’s easier to provide services for people if we hammer square pegs into round holes and insist that they all fit. No matter what damage occurs to the person who is being hammered.

It’s easier if people are powerless and devalued and less than other people, because then we are less trouble. Grateful, and silent. In the disability sector, the squeaky wheel doesn’t get the grease. The squeaky wheel continues to squeak until both wheels fall off.

And it is easier if we believe the old myths about disability, the ones perpetuated by doctors and ‘professionals’ – those myths that tell us that disability is bad, a personal problem, that we need to be cured or appear less disabled, that it is disaster or deficit, not difference.

We spend our time looking at our feet and engaging in relentless, bitter, petty tribal conflicts – because we can’t battle our way out of crisis. We can’t work together to take back control.

Bollocks to that. Let’s take our power back. And let’s bridge the blasted gap so that we can work together.

(Cartoon description) A man is interviewing a contestant in a ‘Quiz Wiz’ box.

Who are the most important and interesting people in the world?

Politicians are…of course.

Correct. And how much media content should be devoted to them?

Huge amounts. Too much is never enough.

Correct answer. What is the most fruitful, worthy and wonderful principle in the democratic political culture?

That would be the idea of relentless bitter tribal conflict.

Sorry, that answer is incomplete. It should be relentless bitter PETTY tribal conflict.

Oh no! How dumb of me! Pettiness is the most IMPORTANT THING OF ALL…