Sunday, March 30, 2014

Client 98

No pictures for this post.

But listen to the words.

They come from the Lanterman Developmental Center, a state-run board-and-care facility in Los Angeles County that houses roughly 100 men and women with conditions such as cerebral palsy and autism.

'On the morning of Nov. 6, 2012, an aide was helping Client 98 from the shower to the bed when the aide noticed drops of blood on the floor. A health services specialist found that the woman had a tear in her genital area.

An on-site physician examined Client 98, whose age was not included in public records, and concluded that someone might have sexually assaulted her.'

Drops of blood on the floor. This nameless woman had been raped so violently that it had torn her.

“It was some type of blunt force trauma, but I cannot tell what,” said a nurse who examined her, according to public records. The nurse confirmed an assault had occurred.

They are the words on paper. They do not tell us the name or the age of this unknown woman, who could have been eighteen or eighty. They do not tell us what type of disability she had - whether she was unable to move whilst being brutalised, or whether she was held down, her screams unheard or muffled. They don't tell us how she felt, or whether she could articulate what had happened to her. We do not even know her name.

Drops of blood on the floor.

Remember that, because the rest of that story is couched in the language of the service provider, the language of the disability sector. The story of 'Client 98' is embedded in compliance reports here - http://www.cdph.ca.gov/programs/LnC/Pages/DevelopmentalCenterActions.aspx - and almost as an afterthought. The dehumanising of people with disability, playing out today, right under your noses.

It's a well known tradition in the disability sector. Rape a woman, it is an 'incident'. Torture a man, it is a 'breach of compliance'. Drag a girl across the room by her hair, it is a 'case'. Murder, neglect, rape, torture, abuse - reduce those words to the language of the service provider, the language of 'administrative error', and it almost seems acceptable. You could almost sleep at night, even if it sometimes disturbs you during a game of golf.

Think about Client 98 for a moment, and see those drops of blood. They are steadily marking a trail from the shower to her bed, drop by drop, telling the story she cannot.

Now listen to the words that come after.

'Nancy Lungren, a spokeswoman for the Department of Developmental Services, said in a written statement that the facilities “responded to each incident noted and developed plans of correction immediately to provide the necessary care and services, and to address any system issues.” In addition, Lungren said independent reviewers are expected to start visiting the facilities in April to “examine the root cause of the deficiencies” and offer an improvement plan.'

Rape as administrative error or 'system issue', brutality as 'deficiency.' Words that help you sleep at night, the bureaucrat's Serapax.

The information above comes from a newspaper article - http://blogs.kqed.org/newsfix/2014/03/27/130697/abuse-findings-continue-California-developmental-centers - from the Centre for Investigative Reporting, an organisation which has no parallel in Australia. The story of Client 98 - and thousands like her - are embedded within compliance reports and reviews and reports - but you have to care enough to look. You have to care, make available enough funds, have enough INTENT. The investigative reporting was carried out by the Center for Investigative Reporting's 'Broken Shield' project. You can read about their work here.

I can hear the responses of aging parents of institutionalised men and women in Australia already. But that is in America! they will cry. Or 'those things happen, but they are isolated cases', they say. Or even 'abuse happens everywhere, even in group homes!'

Some of those things hold true - abuse happens everywhere, in group homes as well as in institutions. Abuse is prevalent at the hands of carers, too, for people living in family homes, or as 'resident abuse' where people will be 'placed' with others who abuse them. And really, they are just more words, aren't they?

Statistics sometimes speak louder than words, even when they are couched in the language of the bureacrat. In Melbourne, where 'incidents' are often not reported or recorded, the Department of Human Services recorded 112 cases of alleged "staff-to-client" abuse in 2011-12 in government and community managed housing for the intellectually disabled. That reflects the statistics in other Australian states, but 'evaluations' are rarely made public and 'incidents' are burdensome to report or record. Abuse is more prevalent in institutional settings, and you are more likely to get away with it. You can rape Client 98, and nobody will ever tell - unless you're unfortunate enough to accidentally choose someone who could communicate or testify, or someone who hasn't been sterilised or put on birth control. Most times, that won't happen, especially if you're careful. Your secret is safe with us.

Institutional abuse isn't just an issue around government run institutions, nor private ones. It's an issue around choices in housing and support for people who have a dearth of good choices. Choice should never include rape or torture or abuse at the hands of those with power.

We disabled people watch as the reports steadily leak in, one by one. Murder, rape, torture, neglect, abuse, brutality by brutality, report by report, inquest by inquest. They are recorded on the Disability Clothesline wall -https://www.facebook.com/groups/disabilityclothesline/ and in the reports by disability rights groups. They fall to the ground softly, unwatched and unheard by bureaucrats and people who are unwilling to watch or listen.

Like drops of blood on a shower floor.

Monday, March 24, 2014

The Right to Bigotry

*** WARNING ***

This post contains disability and racial hate speech.

This is Neil. Neil is a retard.

Imbecile, dummy, stupid, idiot, subnormal, a mongol, defective, dimwitted, mentally defective, moronic, slow, shall we continue? Then there are the clever analogies – a couple of sandwiches short of a picnic, not playing with a full deck, a few bricks short a load, the elevator doesn’t go all the way to the top, the lights are on but nobody is home, all foam and no beer, smart as bait, not the sharpest knife in the drawer, as sharp as a box of rocks, not the sharpest knife in the drawer, a few clowns short of a circus, fell out of the stupid tree and hit every branch on the way down, receiver is off the hook, as sharp as a wet bag of mice, few roos loose in the top paddock, few stubbies short of a six pack, wouldn’t know if his arse was on fire.

Funny, right?

Here’s the thing. I don’t know anything about Neil, except that he has Down Syndrome. But I do know that as a person with Down Syndrome, he is the guy who will be targeted by hate speech, based purely on his physical characteristics and his status as a man with Down Syndrome.

I wouldn't call Neil a retard. I don’t like to use words that resonate with hate, that make people hurt, that make people feel bad about themselves. And I don’t think other people should be able to hurt others, either.

George Brandis does. He’s our Attorney General, who in an address to the Australian Senate yesterday said, ‘People have the right to be bigots, you know.’

This guy is the Minister in charge of the Human Rights Commission. He’s making the argument for free speech and telling us that bigotry is our problem, not theirs.

George thinks it is okay for people to call Neil those names. Bigotry is, by definition, ‘the state of mind of a bigot: someone who, as a result of their prejudices, treats or views other people with fear, distrust, hatred, contempt, or intolerance on the basis of a person's opinion, ethnicity, race, religion, national origin, gender, gender identity, sexual orientation, disability, socioeconomic status, or other characteristics.’ On that basis, it is okay to call Neil those names or to treat him differently, to use hate speech against him or discriminate against him in a myriad of other ways.

Neil’s problem, hate speech. But who is looking after Neil’s rights?

We don’t have national disability vilification laws in this country, despite lobbying by disability groups – you can read a very good submission here. http://www.communitylaw.org.au/ddls/cb_pages/files/Disability%20Vilification%20Report%20FINAL%20300412%281%29.pdf

There is one exception – Tasmania. They specifically prohibit ‘public conduct that incites hatred towards, serious contempt for, or severe ridicule of a person or group of persons on grounds of disability, sexual orientation and lawful sexual activity.’ In Tasmania, you can’t be hatin’ on the disabled people.

It’s been different for Aboriginal people and people from culturally and linguistic diverse backgrounds, who worked tirelessly to bring in legislation including the Racial Discrimination Act 1975, the Commonwealth Racial Hatred Act (1995) and the Human Rights and Equal Opportunity Commission Act (1986) to outlaw racial discrimination in the public sphere in Australia.

That’s all in the past. As one of his first acts of office, George is proposing sweeping and controversial changes to the Racial Discrimination Act, including a repeal of section 18C. Section 18C, in its current form, makes it unlawful for someone to do an act that is reasonably likely to "offend, insult, humiliate or intimidate" someone because of their race or ethnicity. George wants to remove the words ‘offend, insult and humiliate’ removed.

People do have a right to be bigots, you know, says George, who is a Queenslander. In George’s brave new world, it would be okay for a publican to call Neil a retard, then turn to the Aboriginal man next to him and call him a nigger or coon. In the same state, it would be illegal for three people to sit together if they are wearing motorcycle patches.

People do have the right to be bigots, says George. The late and unlamented Fred Phelps had the right to picket the funeral of Heath Ledger with placards carrying messages of hate, because the Westboro Baptist Church don’t like gay people (or anyone else, it seems, including actors who play gay cowboys). The same group that planned to protest the funeral of twenty kindergarten students who were gunned down in a school shooting, or the funerals of dead soldiers. George would have no problems with Fred Phelps’ message to the disability community –

“God doesn’t hate cripples because they’re crippled. Cripples are crippled because God hates them. Retards are brute beasts that shamelessly consume their own mucous the way vile dogs eat their own vomit. Their mind is of such a reprobate nature they are given to sexually gratifying themselves in public while their physically disabled cohorts take exorbitantly long periods of time to walk down narrow hallways, slowing the progress of those not despised by God and impeding their holy endeavours.”

George wouldn’t have a problem with the views of the Church, because it’s all about the free speech. Check out the type of free speech he’s advocating here - http://www.godhatesgoths.com/godhatesretards.html He’d embrace the view that the Church should be able to spill their hate in the form of free speech.

Like other people from equity groups, I am saddened and confused that someone appointed by our government should be advocating for hate under the guise of freedom. So I’m using my freedom of speech to tell George Brandis that I think he’s an asshole. I’d rather have a beer with Neil, who has committed the extraordinary crime of being born with an extra chromosome.

Meshel Laurie says it well - Extraordinary times we live in. Tough times for Australians unlucky enough to have been born extraordinary.

Wednesday, March 12, 2014

The Minus People

And now for the most offensive media quote of the year - are you ready?

“We have profoundly disabled people at Stockton; some are blind, some are deaf and blind and some can’t move at all,” she said.

“If you’re in that situation, you’re pretty much stuffed at making a decision.” - Newcastle Herald

Sorry?

I have to admit, I found it a little delicious sharing this quote with my fellow people with disability. Some are blind. Some are deaf and blind. And some can't move at all.

The outrage was pretty much unanimous.

Said Sean: '...I am "so paralysed" that I should be on life support 24 hours a day. The doctors can't explain why I breathe for myself… Really it's because I made a decision to do it for myself!

In the 13 years and nine months that I've been paralysed I've had to fight against people taking my decision making capacity away from me. Smart politicians and bureaucrats invite me to events not to speak out about issues like this but, just to make it bloody obvious that people with significant disabilities can be self determining.'

Said Tanya: 'As most of you are aware l am woman who was born with Profoundly Intellectual Disability & MR word too l am married with 3 kids & l can make decisions for myself at most times on my bloody own who said they can't make a decision on there own who ever did has rocks in there head & they are bloody short sighted with 50s & 60s era in there bloody heads still...'

And on it went, while I wondered about the reporting in the newspaper, which is largely sympathetic to the view that Stockton should remain open, the views of parents and nurses and other 'stakeholders'. Where are the voices of the people at Stockton? Or the people who have escaped institutionalisation and who are now living their lives outside, in the community? Where are the voices of people with disability?

They're harder to hear. But good journalism used to be about listening to the voices that are hardest to hear, right?

It's a year since Newcastle Herald reporter Joanne McCarthy was crowned Australia's journalist of the year. McCarthy won the 2012 Graham Perkin Australian Journalist of the Year Award at Melbourne's Crown Casino for her campaign to uncover the truth about child sex abuse in the Catholic Church, and it sounds like it was a well deserved award. But would Perkin have approved of the way the Newcastle Herald is reporting the issues around Stockton?

You might not know about Perkin, who died in 1975. If you had read his writing, you would almost certainly remember it - it is filled with depth and brutality and warmth and imbued with the tone and colour and smell of every circumstance the man ever found himself in. And this man, this compassionate human being, found himself inside an institution - an institution for children called Kew Cottages.

They called them the Minus Children, the children who lived in that institution. Not because they were lesser human beings, but because they were behind, in everything from esteem to opportunity. Perkin's approach was to throw open the doors to the public and bring the light into darkness through his reporting in the Age - it created real change, raising money to create more opportunities for disabled children, highlighting injustices which led to major legislation, Victoria's Intellectually Disabled Persons' Services Act 1986.

Like Kew Cottages and other institutions, Stockton has a confronting history of violence and abuse, as well as the other limitations that come from living in an environment designed to suit staff rather than people. It's unsurprising that the perception of people with disability as helpless objects of pity and charity - unable to make a single decision - is being perpetrated. In a culture of learned helplessness and institutionalisation, people are rarely given the opportunities that people on the outside have. Minus People indeed.

I spent some time looking at the coverage around Stockton Centre in the local papers. Whilst the rest of the country is focused on being outraged about breaches of human rights at Manus and Nauru, papers like the Newcastle Herald are focusing almost exclusively on those loud voices, the voices of frightened parents and self interested unions. Where is the investigative journalism about the real issues? Who is talking to those who have been abused, or those who have broken out? Who is talking to people with disability, the Others, the Minus People?

Hard questions, a hard task. I used to edit a community newspaper, and the stories that come knocking on your door are always the easiest to cover. Good investigative journalism is about knocking on the other doors, and if necessary, kicking them down.

Governments often get it wrong when it comes to disability. But when it comes to devolution, they haven't. And I mourn for the Graham Perkins of the media world, those aggressive and brave and bolshy newspaper people who peddle truth instead of popularity.

If you read this, you should also read:

http://gimpled.blogspot.com.au/2014/03/the-others.html

http://rachel-siewert.greensmps.org.au/content/transcripts/open-letter-samantha-conner-people-disability-and-community

www.shutin.org.au

http://www.kewcottageshistory.com.au/

Tuesday, March 11, 2014

An Open Letter to the Greens

An Open Letter to the Greens

To: The Greens, all NSW Members of Parliament, people with disability and the wider community

An event yesterday served to demonstrate why political parties must have strong policies which reinforce their values. I am speaking, of course, of the decision made by the Newcastle Greens to actively protest against the closure of institutions.

The NSW Nurses and Midwives Association, together with the Newcastle Greens, held and promoted an event protesting against the closure of Stockton Centre, an institution where over 400 people with disability have been locked away for, in some cases, a lifetime. The NSW Government has failed to carry out its commitment to close this and other institutions by 2010, but have now recommitted to closing all large congregate facilities by 2017.

Devolution of institutions is not an issue that should be confused with the issues around privatisation, nor is it directly related to the NDIS. The forum that was held deliberately blurred the issues and was held as a result of lobbying by the nurses’ union, who are concerned about job losses and parents, who are afraid of change, especially in the absence of good housing and support options for their children. But research has shown time and time again (most recently by the NSW Ombudsman) that institutional models restrict the rights and opportunities of the people with disabilities who live there.

The Newcastle Greens made several comments this week on social media reinforcing why they believed the Stockton Centre should stay open. When disability and human rights advocates protested, they censored the views of those people. I believe this directly contradicts the Greens’ stated position that they support inclusion. The Greens cannot object to locking up asylum seekers at Manus Island and then advocate for locking up people with disability on Australian soil.

I understand that the Newcastle Greens are listening to the unions and the parents. What I would like to know is – who is listening to people with disability? Would the Greens listen to the voice of the people smugglers and G4 or Serco, who will almost certainly be out of work if offshore processing is shut down, rather than the voices of those who are or have been trapped inside for a lifetime?

Kim Walker, who grew up in a number of institutions, including Stockton, passionately wanted all institutions closed so that all people with intellectual disability can live full lives in the community. She is survived by her sister Lorraine, who remained locked away at another state-run institution, Rydalmere, until 2002.

Kim wrote about her experiences at Stockton and a quote from her writings is below;

“It took me a while to settle into living at Stockton. Some of the staff there were good and others not. The staff who were nice and tried to make life better for us got into trouble for it. Other staff treated me like I didn’t exist and I was not important…when you got upset, the staff would tie you to a chair that had leather straps for your legs, arms and body. They laid the chair on its back so that you would not fall forward if you rocked it. You might be left like this for a couple of hours…this only happened to me once, they said it was so I learned to behave.

They also used straitjackets on kids and gave kids needles to calm them down. Luckily, this never happened to me. There was also a time-out room, a small room with nothing in it. I used to go in there and try and calm people down. They would often drug the kids who were sent there. Some would have to stay in there all day…sometimes people would get violent because they were so unhappy. I was hit by other people and almost had my eyes gouged out once.

I learned very fast how to keep out of trouble.

It took a while to get used to living in the community…for most of my life, I did not know what happiness, friendships or choices were.”

Thousands of Australians like Kim and Lorraine have their human rights denied every day when they are required to live in segregated or congregated care in order to access the support they need. This contravenes the UN Convention on the Rights of Persons with Disabilities, which Australia has ratified. It also contravenes the Australian and State Governments' stated commitment to closing institutions.

I call upon the Greens to talk to people with disability like Kim. I call upon them to talk to disabled person’s organisations like People with Disability Australia to inform development of a policy that aligns with the Convention and which specifically precludes the supporting of disability apartheid, practices which segregate and isolate people with disability from the rest of the community.

The Greens have a reputation as being the ‘party that is powered from the bottom-up’ and for standing up for what is right, not just what is easy or what polls well. Please make sure that you stand up for Australians with disability.

Samantha Connor

Disability advocate

www.shutin.org.au

http://gimpled.blogspot.com.au/2014/03/the-others.html

http://bolshydivas.weebly.com/uploads/6/0/3/7/6037959/lu_deinst.pdf

On Taxis and Vulnerability

On Saturday night, I caught a taxi.

Unremarkable, right? Not anything particularly adventurous – nothing that would make your heart start racing and turn your stomach into knots way up near your tonsils. Not something risky that you’d tell others about – it wasn’t like I went paintballing or skydiving or swimming with sharks.

To me, it felt like risk. I carefully noted the taxi driver’s registration, something I rarely do. And my ‘tactical’ pen (yes, my husband bought me a Smith and Wesson pen made of titanium, purpose built for the casual stabbing of rapists and thugs) was tucked neatly inside my bag.

A few short weeks ago, women who use wheelchairs were blissfully oblivious to the dangers posed by their vulnerability whilst using Perth taxis. Then 58 year old Peter Edward Kasatchkow was charged of sexually assaulting a woman with cerebral palsy in the back of his cab last month.

Let me explain what it feels like to be put in a wheelchair taxi. It is an experience that involves contact, and lots of it. You wheel yourself (or are wheeled) to a ramp, and are raised up to the back of the platform. And then your wheelchair is strapped in by the driver – blue nylon webbing straps fasten your wheelchair to the floor. The driver leans down, his head near your feet, to strap you in tightly and ratchet you in place. Behind your back, more straps secure your chair more tightly. And the final securing of the passenger and wheelchair is often the driver wrapping his hands around your waist to secure your belt – it is a routine experience for me, and I am relatively mobile. It doesn’t matter if you are wearing a business suit, nor if you are carrying a briefcase – for those short few moments you are locked into an act where you are close to another human who is carrying out an act of personal care for you.

Peter Edward Kasatchkow probably did that for his passenger. Then, it is alleged, he drove her to a secluded area and sexually assaulted her.

This isn’t the horrible part of the story. What? You were expecting outrage? No, people with disability are raped every day, in and out of care, usually by people in positions of trust. This brave young woman, who reported the assault to her support person, will have to live with not only the awful trauma of being sexually assaulted by a taxi driver, but will also need to catch taxis for the rest of her life. Imagine that. You are raped in a dark lane, then must walk down dark lanes every night until you die. That is indubitably horrible.

What is even more horrible – awfully, incomprehensibly horrible – is that this man is alleged to be a serial rapist. And even worse, that nobody much seems to care.

Perth is a small place. We know the details that others don’t know. The name of the taxi company, a company many of us are studiously now avoiding – the fact that the police apparently discovered that he’d tried to conceal his offenses by wrapping a rag around the camera, a trick which only partially worked. Nobody told, you see. The rag slipped, the actions were recorded. And today, Peter Edward Kasatchkow, a Polish man from Dianella, was charged with twelve more offences – against a woman in her thirties and a woman in her fifties. The offences are alleged to have taken place in January and February of this year, and we hear that police had a tough time tracking down the victims from the camera footage.

If you have an intellectual disability, nobody sees, nobody hears. If your taxi is late, why, the traffic was bad. If you wake up screaming, you have ‘behavioural issues’ and somebody will probably adjust your medication. In the early 1990s, thirty children were routinely preyed upon by a paedophile bus driver, who worked for a Catholic school in South Australia. One boy screamed so hard every night that his parents went to sleep in the garden shed.

I read the charges – 12 counts of indecently dealing with an incapable person – with a sinking feeling. Because the questions that are raised are innumerable.

If the footage isn’t of sufficient quality, will the victims with intellectual disability be able to testify?

Why has the man been charged with ‘indecently dealing with an incapable person’, a charge that has recently resulted in a ‘getting off scot free’ result, rather than harsher charges? For example, a taxi driver charged with the recent sexual assault of a seventeen year old Kalgoorlie girl has been charged with indecent assault, deprivation of liberty and sexual penetration without consent.

And the biggest question of all - if the camera only captured two months’ worth of footage – how many others are there?

Tomorrow, the charges will be heard in the Perth Magistrate’s Court. And I will be thinking of this young woman, who stands for all of us. We will not be afraid to catch a taxi. We will support you in any way we can, our disability community, to pursue justice for the others and for the rest of us. If this man is found guilty, we will lobby for the harshest possible sentence to be delivered.

Because no woman should be scared to walk, or wheel alone.

Monday, March 10, 2014

The Others

When is a home not a home?

When it’s an institution.

This week, disability advocates were horrified to discover that the Newcastle Greens, together with the NSW Nurses and Midwives Association, were advocating against the closure of institutions.

What?

That’s right. One of the last states in Australia to stop breaching our international human rights obligations, NSW, have made a commitment to close the last of the old ‘congregate accommodation facilities’ – including Stockton Centre, an institution for the intellectually disabled in the Hunter Valley. And some ‘stakeholders’ don’t want that to happen.

There are a lot of stakeholders.

‘It’s their home!’ the parents cry. ‘My child has lived there for forty years!’ They’re stakeholders who are bound not just by love and fear, but by exhaustion and guilt. They’ve worked their whole lives to find the best possible solution for their child, who now knows nothing else. The prospect of the unknown is terrifying, despite the experiences of others who have successfully transitioned into the community.

‘But that’s my job!’ say the nurses, who have banded together with the parents. They’ve built a career in these institutions, and they’re not going to let it go lightly. They say they’re arguing for the rights of disabled people, but that’s like saying that the Farmer’s Federation should argue for the rights of nurses.

‘It’s about privatisation!’ shout the politicians, dismissing the fact that the decision to devolve institutions in NSW was made in 1998, when the NSW government announced that all residential centres accommodating people with disability would close by 2010. At the time of the announcement, more than 2,000 people lived in large institutions. It’s about devolution, not privatisation. And there’s a lot of chatter about the convenience of having collocated medical and specialist services, without a mention of the ‘f’ word – funding. Keeping people locked away together saves the government a lot of money.

But what of the voices of the people who are shut away from the world? The voice of people with disability?

It’s almost like they are ghosts. Like in that movie, The Others. Benign poltergeists who do not even know they are ghosts. Invisible to the rest of the world but for a shadow here, a soft knocking there.

You can hear their voices in the stories, but you need to listen carefully, look hard.

From the Newcastle Herald, October, 2013 -

‘BELMONT North woman Wendy Cuneo says she and other Stockton Centre parents are alarmed at any idea of the institution closing. Mrs Cuneo and her husband Clem have three children with disabilities, including David, 34, who has been at Stockton since the age of 18.

When the Newcastle Herald met the pair in Mayfield yesterday, David was adamant he wanted to move away from Stockton.

But Mrs Cuneo says experience tells her that a large, protected space like Stockton is the very best of addresses for her son.

"Turn your back on him for five minutes and he will have got himself onto a bus somewhere, and talked the driver into taking him even without the money for the fare," she said.’

I can hear David’s voice.

From a Facebook post about a man who moved from Stockton Centre to a group home.

"The final day came when R was to leave. They just didn’t ever understand how to understand about R and they were always trying to force R to do things. You cannot force R to do anything. He has to do it…. When we made the decision about trying to get him into the house... I told him about it…and R’s never been an easy person to take into a new situation, he’s always baulked at it. So I talked to him about it and then arranged to make a visit to the house before he actually moved in, and I think they had some kind of welcoming party. We went up to the house and he didn’t hesitate. I said it was going to be his own home. He walked up the steps, into the house, he walked down the corridor to the back room and joined the party. And then of course when he moved in we showed him where his bedroom was and there was absolutely no question that he understood this was his home. So what’s going on in his mind – the difference between that environment and those awful places is just so amazing.

(What are the differences?)

Well, he was treated more as a person…The other things that happened – he suddenly – like you blow up a balloon and it fills with air and it becomes tauter and firmer? Well that’s what happened to R within himself. There was more of him somehow."

I can see R, shedding off his invisibility, gaining in solidity and presence, becoming more real.

Those stakeholders – those people with a vested interest in the outcome –they’re easy to see, aren’t they? They’re present, on social media and in the newspapers and in Parliament with their speeches and placards and heartwrenching stories.

It’s harder to see the Others, let alone hear their voices. That’s because we have created a system of disability apartheid where people are routinely segregated and isolated in order to get the support that they need, where their human rights are denied every day.

You can hear their voices here, at the Shut In campaign site, where people like Jan Daisley talk about their experiences inside institutions.

You can hear their voices here, in the UN Convention on the Rights of Persons with Disability, which talks about the right to be fully included and to live in the community with choices equal to others.

We need to close the institutions now and make sure people with disability have enough support to live where ever they choose – not in an institution, a hospital, a jail or a ‘facility’.

Listen carefully, look hard. It’s only then that people with disability living in institutions will stop being ‘the Others’ and start being ‘all of us’.