Wednesday, October 15, 2014

The Dignity of Slavery - or 'Why My Shoes Are Cheaper at Kmart'

We used to call them sheltered workshops.

That’s a thing of the past – they’re now branded as ‘Australian Disability Enterprises’, places where people with disability are routinely placed and where you can earn as little as $1.79 an hour. A kinder term, but ‘lipstick on a pig’ in the eyes of many. Workers are scaled by ‘productivity scaling’ – despite the fact that the government’s own productivity scaling tool (BSWAT) was declared discriminatory and illegal last year, productivity scaling in different forms continues in sheltered workshops around Australia. Sheltered workshops using the BSWAT tool have three years to stop using it, but their employees, or ‘participants’, are routinely paid far below the minimum wage.

That’s the picture in Australia, not in countries like the UK. In England, a social enterprise approach is used, where the organisation trades in the market and takes on a degree of business risk, as well as receiving a subsidy in compensation for possible reduced productivity of disadvantaged workers in order to allow it to compete on a level playing field with conventional organisations. Workers are paid the minimum legal wage, £6.50 ($11.80 AUD).

But a scandal hit the UK yesterday, where a welfare reform minister offered a ‘full and unreserved apology’ after information was leaked that he told a conference that some disabled people were ‘not worth’ the minimum wage. He faced immediate censure from charities, disabled persons groups and the Prime Minister and offered an immediate apology. From a news report;

“You make a really good point about the disabled. There is a group where actually, as you say, they’re not worth the full wage,” Freud said. “…without distorting the whole thing, which actually if someone wants to work for £2 an hour, and it’s working can we actually…”

In a statement issued by the Department for Work and Pensions, Freud said: “I would like to offer a full and unreserved apology. I was foolish to accept the premise of the question. To be clear, all disabled people should be paid at least the minimum wage, without exception, and I accept that it is offensive to suggest anything else.’

An outraged Downing Street distanced itself from the minister by saying there could be no exceptions to the minimum wage. The Prime Minister said, “Of course disabled people should be paid the minimum wage and the minimum wage under this government is going up and going up in real terms. It is now at £6.50. We will be presenting our evidence to the low pay commission, calling for another real-terms increase in the minimum wage.”

Come again?

A scandal because a politician holds views that people with disability should be paid under the minimum wage? But our country does that every day!

Two pounds an hour – well over double what Australia legally pays people with disability working in Australian Disability Enterprises – is a cause for national outrage in Britain, but causes barely a murmur in Australia. We speak with disdain about Indian sweatshops, but buy the shoes that disabled workers have packed and paired at Kmart with nary a word. We segregate people with disability into ‘special’ employment settings and exploit them financially, with a menu of work options that generally include menial, tedious and repetitive work. And we use meaningless phrases to validate our abrogation of our responsibilities – ‘dignity of work’ to justify paying people a few dollars an hour, ‘Australian Disability Enterprise’ instead of sheltered workshop.

So what does that look like for people with disability in Australia, where those with a disability earn wages equivalent to those paid in third world countries?

I sat next to a man last night who struck up a conversation with me. He was intelligent, casually dressed, personable. I did not know that he had a disability until he told me. And eventually the conversation turned to his past employment, which included a stint in a sheltered workshop, being paid $2.50 per hour.

“And the work,” he said.

“The worst kind of work. The most boring stuff you could imagine, and people have worked there for years. No wonder they are bored and unproductive – who in the real world has the same job for forty years?”

That view is reinforced by disability rights organisations, who say that packing goods, pairing shoes and sorting recycled clothes for decades in an ADE is isolating, financially exploitative and does not allow people to be able to progress in employment in the same way others do.

Samuel R. Bagenstos, the Principal Deputy Assistant Attorney General in the U.S. Department of Justice, agrees.

“[W]hen individuals with disabilities spend years — indeed, decades —in congregate programs doing so-called jobs like these, yet do not learn any real vocational skills, we should not lightly conclude that it is the disability that is the problem. Rather, the programs’ failure to teach any significant, job-market-relevant skills leaves their clients stuck. As a recent review of the literature concludes, “[t]he ineffectiveness of sheltered workshops for helping individuals progress to competitive employment is well established.”

A 2011 report - "Segregated and Exploited: The Failure of the Disability Service System to Provide Quality Work." – argues that people with disability have the right to spend their lives in the most integrated setting appropriate for them as individuals and that this could just as sensibly be applied to the employment setting.

A full and equal life in the community can’t be achieved without a meaningful, integrated way to spend the day.

All of this means nothing without listening to the stories and understanding that this is about real life for a community of Australians, who deserve to be afforded the same basic human rights as other Australians.

I hear them every day, those stories. Not just from people with disability - from their families and government and from those who run sheltered workshop operations. I can see the competing interests and the frustrations and understand the tensions. That does not abrogate our responsibility to treat people with disability as equal citizens with workers’ rights.

‘I earn $4.33 per hour, and I’ve worked there for over ten years. If you are working there, you are not legally allowed to apply for another job until you quit that one.’
– a sheltered workshop employee in WA

'As a supported employee of (name of sheltered workshop), this letter is to give you information in regards to obtaining 'open employment' with a disability employment service. Open employment is when people work for an employer that is not (name of sheltered workshop). Examples are McDonalds, Kmart, KFC. To be eligible for open employment, you need to be assessed by Centrelink. (name of sheltered workshop)can assist you with this. One of the eligibility (sic) is you cannot be registered with any other government funded employment agency. This could affect your employment at (name of sheltered workshop). If you would like to discuss this opportunity in more detail, please speak to your supervisor.' - a letter sent to sheltered workshop employees in WA

‘They have separate lunchrooms, the employees and the staff…that’s what they call them. The staff are the people who don’t have a disability. They started calling the employees that when someone made a complaint about the word ‘participants’, but they still get paid less than half the basic wage.’ – a staff member at a sheltered workshop in Queensland

‘In some places, they pick up the workers and drop them off in buses, and they take the transport costs out of their wages.’ – a South Australian disability advocate

‘He likes his friends there. He’s been there for twenty two years and likes going to work. I’m sixty now and I can’t look after him all day. He’s never had any funding – I don’t know what I would do if he was not at work.’ – a mother of a forty year old man with an intellectual disability

‘I can’t buy a house and I can’t earn too much money because I will lose my pension if I do. And I can’t move out or rent or do anything, really. I can’t buy my mother a birthday present.’
– a sheltered workshop employee

'She's too disabled to work anywhere. She doesn't work, really. I can't imagine her doing anything else' - parent of a young woman with a 'severe and profound' intellectual disability

'He worked as a swimming teacher at (a therapy clinic). They passed him around in the pool to learn how to handle young people with cerebral palsy, and he knew the difference between when he was in the pool recreationally or when he was at work - he would hold himself differently. He was paid award, casual rates.' - parent of a young man with spastic quadruplegic cerebral palsy, a 'severe and profound' intellectual disability and a vision impairment

‘The average job tenure in Australia is about seven years – in Portugal, it is almost thirteen years.’ - OECD.Stat; Australia at Work W1

Image description - a graph that shows that Australia has the lowest of a range of countries for job duration.

‘They gave me an award when I had been there for twenty five years and they said it was like I was one of the family.’ – a sheltered workshop employee

Image description - a page from the Activ newsletter which provides a list of 'Supported Employee Service Recognition, January to March 2014' Many of the employees have been working for over thirty or forty years.

'The NDIS is a great welfare reform, but the elephant in the room is that it is not tied to bricks and mortar. The NSW government has withdrawn from providing residential accommodation for people with disability. Without people being able to work for a normal wage so they can pay rent or save like others do, there is a great risk of homelessness or further's hard to be supported well when you are living on the street.' - a NSW disability advocate

'It is a mistake to isolate the hourly rate of a supported employee as the only benefit they receive....they are given the opportunity to experience the dignity of work and to socialise with peers.' - Mitch Fifield, Assistant Minister for Social Services and Manager of Government Business in the Senate.

'I wonder if anyone has told the people working in overseas sweatshops that they have the 'dignity of work'. Or that they're 'respite' for the family.' - a WA disability advocate

‘They were better, more honest, when they called them ‘sheltered workshops’, I thought. At least then they were regarded as a stepping stone to employment, somewhere you could get ‘ready’ or get ‘trained’ for work and try a variety of different kinds of work that would suit your skills and employment aspirations – now you’re stuck there forever.’ – a long term employee at a sheltered workshop in WA

‘He is paid $4.79 an hour, and after extracting administration fees and insurance premiums, he is left with $5.49 per annum in his super fund - who else would be happy with that?'
– parent of a young man working in a sheltered workshop

Image description - A screenshot of a workers super account details, which show payments of $65 in administration fees, insurance premiums of $83.39 and a closing balance of $5.49.

Is it possible, shutting sheltered workshops and moving people to integrated employment within the general workforce? Without a doubt. In the US state of Vermont, a quiet revolution has been taking place. The abolition of sheltered workshops has seen more than a third of Vermont’s disabled citizens employed, with average pay rates more than $2 above the federal minimum wage. All that is needed is a change in attitude and a collective will to make it work.

At the heart of it all lies the great dilemma – that treating people as second, or third, or fourth class citizens suits our agenda. We do not have to pay for people’s disability care and support when they are at ‘work’, and it is easier to segregate and isolate and exploit people than to change cultures and environments so that people can enter mainstream, competitive employment. They are out of the way, and happy – they love their ‘mates’, they’ve worked alongside them for twenty or thirty or forty years. And at the end of the day – our shoes are cheaper when we buy them from Kmart.

People with Disability Australia are running a wage justice campaign around this topic. You can read about it here:

Friday, October 10, 2014

Pity Porn - It's a Headf**k, My Friend

Long before I used a wheelchair, another person with muscular dystrophy looked at me kindly and told me this.

“It’s a headfuck, my friend,” she said.

“One day you can do something, and the next day you can’t. And you wonder when you lost that ability, and how many other abilities you will lose.”

I nodded and agreed and didn’t really think much about it. I’d always known I had a disability, and my official diagnosis – of limb girdle muscular dystrophy – had arrived when I was twenty three. And then one day, I went to brush my hair, and my arm felt like it had lead weights attached to it.

It is a funny thing, those changing benchmarks and the way they affect you. The next day, I went and had my long hair cut short (my daughters were dismayed) and joked about it without telling anyone how heavy the hairbrush had become, how unwieldy the hair straightener now was. Just like I hadn’t told anyone how I could no longer shake a doona into a doona cover, or why the kettle was only half filled, just enough for one cup of tea or coffee.

The biggest benchmark, of course, was the moment that I started using a wheelchair.

Impossible to conceal, and the biggest issues are not around the physical barriers but around the societal barriers. People look at you differently, treat you differently. Last week, I was in a shop, and a little boy came up and asked me what ‘fruit’ that was that I was buying. I smiled (it was asparagus) and smiled more when he said ‘sparrow grass’. A delightful conversation, all in all, until his mother came over and told him to stop talking to me. That’s okay, I told her, we’re having a chat. No, she said. I don’t let him talk to people in wheelchairs, they might have diseases.

You understand, perhaps, how this would affect a person’s psyche. You are no longer regarded as a mother, an employee, a wife, a pet owner, a member of the community to be treated as any other. You can’t get a job because of it – you are routinely discriminated against because of it. It takes its toll, all that – and add to it the never-ending fear about will happen in ten or twenty years when you need a lot of disability care and support, knowing that it is not there. The thought of living in a nursing home at fifty, the thought of the resigned look in your child’s eyes when you are no longer their parent, but their patient. Wondering whether you will ask your husband or your child to change your tampon, or whether you should choose the gun or the knife or the rope, if you are still able. That terror is mitigated a little when you know others who have high support needs and who live a good life – but imagine that terror that a newly diagnosed person with a degenerative illness feels at the point of diagnosis.

Enter the Multiple Sclerosis of WA.

Imagine the shiniest of charities, with a glossy annual report, a 30 million dollar turnover, ongoing raffles and charity houses and sparkling six bed ‘facilities’ for young people broken out of nursing homes. The ‘business of disability’ is prominent in their advertising and the board is predominantly made up of people with business and financial management acumen, with a couple of high profile medical professionals and a few people with multiple sclerosis.

That’s the organisation that created the ad that hit the headlines a few days ago. It was a confronting and controversial TV ad, part of a bigger advertising campaign, designed to strike fear into the hearts of the community and tug on their heart strings. The ad, named ‘Trapped’, portrayed a woman trapped in a Perspex box, desperately trying to smash her way out. Cut to a sympathetic nurse asking if she is all right – the woman sits in a wheelchair, unable to move, and a single tear trickles down her cheek.

People with multiple sclerosis were outraged. One woman in the early stages of MS slammed the ad saying it "put fear into her kids".

"This is a terrible ad...It put fear into my kiddies as my disease is nothing on that level... And to say if I ever meet a partner being open with my health ... He run a mile thinking I'll end up in that state.... I'm disappointed ... U made my disease look so horrific."

Another person with MS said the ad was "shocking".

"What exactly are you ppl trying to achieve???? Decrease our work opportunities ? Traumatize our children with the worst case scenario. What if the Cancer Council used the same low tactics?"

Within hours, the ad was removed, with CEO Marcus Stafford posting a sombre apology for removing the ad and distressing members.

For the rest of the world, that is where it ends. They screened a controversial ad that portrayed disability in an incredibly negative light, showed a story that depicted the circumstance of only a few of their members – most people with MS do not experience the level of disability depicted in the ad – and removed it after a public outcry. Good, people say. It’s over. And it was only an ad.

Look at it a little more closely – look at it from the perspective of a person with disability who is *in* the disability sector - and the implications are terrifying.

The MS Society recognised the ‘risk’, clearly, that some of their members would be damaged by the advertisement, that the public perception would be damaging. They explained it away in a letter to members – ‘Market research has shown us that more hopeful/positive stories have little, or no impact, for those who are not aware of MSWA…consequently, a reduced audience response will result in fewer donations from the public, and quite simply, that will threaten our plans….we appreciate that…showing these hard hitting details may leave you feeling uncomfortable and even confronted, particularly if the diagnosis of MS is new to you and your family.’

The FAQ’s attached to the letter are even more revealing. ‘Why are you using fear rather than a positive approach? …we’ve carried out research to determine what does and what doesn’t spark positive action from viewers. What we’ve learned is that the more confronting the advertisement, the more it inspires people to stand up and take action in support of the issue. In this case, finding a cure for MS.’

In other words – we knew it would cause incredible harm, but we did it anyway.

I watched the 'Trapped' video – you can see it here – and thought about why you’d choose to portray people with disability as tragic and pitiable objects of charity. Why, to raise money, of course.

It’s a headfuck, my friend.

There are things that people with disability know when they’re *in* the disability sector that make this act a hundred, a thousand times worse. Aside from the terror experienced by women who are not sure who will change their tampon in the future.

If you’re not *in* the disability sector, you would not know about the bright, beautiful and utterly miserable woman with multiple sclerosis who has been locked away for over a decade in an old C class public hospital – the Quadruplegic Centre, an institution in Shenton Park. She desperately wants to leave, but cannot get enough care and support – and has never been assisted in any way by the MS Society of WA.

Text description: The hallway in the Quadruplegic Centre, outside the residents’ 12 x 12 rooms

If you’re not *in* the disability sector, you would not know that Australia rates 21 of 29 of all OECD countries for employment of people with disability, with less than two percent of people with disability employed in the public service. You wouldn’t know that the biggest reason cited for unemployment was not lack of access, but employer attitudes.

If you’re not *in* the disability sector, you would not necessarily understand that the idea of being recipients of charity lowers the self-esteem of people with disability. Because people with disability are seen as tragic victims, it follows that they need care, are not capable of looking after themselves or managing their own affairs, and need charity in order to survive.

There is no cure for multiple sclerosis, and there are thousands of people with MS and other degenerative disabilities living without support around Australia. Only a few percent of the charity’s fundraising goes to ‘research’ – yet the aim of the ad was to raise funds to find a cure, they say. Yet in the letter to members, the ‘aim’ is to ‘raise awareness and educate the public’ – by portraying a fairly atypical story via a ‘shock’ advertisement – to raise funds, and to ‘position MSWA strongly in preparation for the launch of the National Disability Insurance Scheme’. Can you hear the clang of cash registers?

At what cost are these advertisements run? In the eyes of ‘pitying’ donors, charitable giving carries with it an expectation of gratitude and a set of terms imposed upon the beneficiary. The first is patronising; the second limiting upon the choices open to disabled people. We’re charitable cases, and you don’t need to employ us, nor put in a ramp, nor meet social or economic obligations in any other way – ‘I made a cash donation to those people on the phone last week’, and it made me feel good about myself.

Do we still need charity? Sure. I think caring, charitable acts enrich our society and reinforce the idea of community. But not at any cost – and especially not at cost to people with disability who will be penalised in other ways. If they’re using our images, our names, our cause to raise funds, we should have a say in how we are depicted. How hard would it be to actively include their members, or put together formally recognised community reference groups that approve marketing campaigns and inform the charity about community need? Why can't charity managers review the way they operate, actively involve people with disability and ensure that funds are channelled towards initiatives that will promote inclusion into society as equal citizens?

We need support. We need funds for research. But we also need respect, and a voice, not your pity.

It’s a headfuck, my friend.