The paradox of the Paralympics

Excellent piece here by Amelia Gentleman on the paradox of the Paralympics- the disconnect between the positive attitudes to disability on display inside the Olympic stadiums and the experience of people with disabilities in the wider British society where intensive Government cuts are creating immense suffering for disabled people and increasing hostility towards people with disabilities is resulting in a soaring of hate crimes.

Many radical and activist groups such as Disabled People against Cuts have campaigned and protested against aspects of the Paralympics such as corporate sponsorship by large corporations such as Atos and cuts to services for people with disabilities. Atos who was a major sponsor of the Paralympics is contracted by the UK Government as administrators of assessments that rob disabled people of their benefits.

In this piece on the website of Disabled People against Cuts disability activist Dave King argues that the Paralympics are the precise opposite of the values of disability liberation. King writes

But with the Paralympics we have seen the addition into this cocktail of a supremely powerful and toxic ingredient, the opportunity for liberals to feel good about themselves for supporting the underdog and ‘progress in the fight against prejudice’. It is this thick coating of syrup which has confused even radical disability rights advocates, and is making it almost impossible for critics to speak out, except about the blatantly obvious outrage of Atos as sponsors. But the truth is that, despite all the hopeful talk about how the Paralympics are going to revolutionise people’s ideas about disability, the ideas and values at the core of the Paralympics are the precise opposite of the values of disability liberation. (I write this as a disabled person, one who has undergone one of Atos’ medical assessments and been found wanting, and who is suffering financially as a consequence.

In the Guardian Amelia Gentleman writes:

There has been a clear reluctance among officials this week to sour the happy atmosphere by talking about the Paralympics paradox – the difficulty of reconciling the amazing excitement around the Games, which has portrayed Britain globally as a place where positive attitudes to disability reign, and a bleaker reality that kicks in beyond Stratford.

The guide for journalists covering the event is explicit in its instructions that disability and any issues around it should not be the focus of reporting. It stipulates that reporters should concentrate on "performance, sporting ambition, training, competition and the emotions associated with winning and losing". Most athletes contacted to discuss the broader issues of disability for this piece declined to be interviewed. But many disabled visitors were quick to comment on the disconnection between their experiences within the park and their everyday lives at a time when in addition to cuts to services and benefits payments, charities such as Scope have been documenting worsening attitudes and official figures show that incidents of disability hate crime have soared to their highest ever levels.

Kalya Franklin, a disability campaigner whose Benefit Scrounging Scum blog has charted the rising problems faced by disabled people at a time of cuts to services and benefits, was amazed at the ease of her journey to Stratford from Birmingham, describing it as "the smoothest journey I've ever done on public transport". "People were there waiting to offer help – that's very unusual. There were much higher levels of staffing. That's not typical, nor is seeing lots of portable ramps around," she said.

She was delighted to be at the event, but like many, she was struggling with the Paralympics paradox.

"It's a utopian fantasy of where we need to move towards as a society," she said, pausing for a moment at Stratford station (interrupted on two occasions in the space of five minutes by transport staff asking if she needed assistance). "It's brilliant, because this has shown that with the right attitude, will and financing, it can be done."

The sporting event was for her, like any sporting occasion, a bit of escapism from daily problems, but she was anxious that attention to the pressing issues facing people with disabilities should not be deflected while the country basks in the international congratulations for having mounted a sellout Paralympic event. She pointed to a planned 20% cut in the disability living allowance (DLA), announced in the 2010 budget, in particular, arguing the that extra money, for employed and unemployed claimants to help with the extra cost of disability, had helped finance the extra cost of care and transport for many disabled visitors to the Games.

"What the public haven't realised about the Paralympians is how many of them are completely reliant on DLA. Although they are superfit athletes it doesn't mean they aren't also disabled and have mobility needs and care needs in their day-to-day lives," she said.

Here is what happens when the profit motive drives the delivery of human services

photo courtesy of Sydney Morning Herald

The dangers involved in allowing the the for-profit private and corporate sector to deliver human services to vulnerable people are once again evident in a report More than board and lodging: the need for boarding house reform by the NSW Ombudsman into licensed for- profit boarding houses in NSW.  The Report documents what happens when the profit motive becomes the main driver of the delivery of human services and Governments and the not for profit sector hand over responsibility for service delivery to the private sector..

In NSW boarding houses are run as for- profit private businesses to provide accommodation to people with disabilities, people with alcohol and drug problems. and mental illness. Residents are usually reliant on income support and pay between 75-100% of their benefits to the boarding house for accommodation and consumables

 The Report documents shocking levels of abuse, sexual assault and mistreatment of residents by staff and other residents. The Report demonstrates the complete failure of the Government's licensing and regulation of for- profit and corporate providers.

The Ombudsman's investigation  found that residents have been physically and sexually assaulted by staff and other residents, have died in appalling circumstances, and been denied basic rights, including contact with their families. This is the fourth report in less than 10 years on the failure of the state and the for profit providers to protect boarding house residents, in particular those with psychological and intellectual disabilities.

 Adele Horin's report in the Sydney Morning Herald  describes the conditions:

An estimated 455 private boarding houses operate in NSW with more than 5000 residents, most of them poor and vulnerable. They pay the proprietor 75 per cent to 100 per cent of their pension. Thirty-one of the boarding houses are licensed by the government to accommodate 687 residents with mental illness and/or intellectual disabilities. They must comply with conditions set out in legislation.

The report, More than board and lodging: the need for boarding house reform, shows the level of care for boarding house residents is inferior to that received by people with similar conditions in housing run or funded by the government.

For example, in 2008, a resident was found 12 hours after he had died in a room strewn with faeces and toilet paper. Three months earlier, hospital staff had raised concerns about his hygiene and nutrition. Around the time of his death, the department had assured the Ombudsman of its initiatives to improve monitoring and compliance at the boarding house. The boarding house eventually closed due to ''unrelated factors''.
Another case involved two residents aged over 80 with schizophrenia, who lived in a licensed boarding house despite having been assessed as needing nursing home care.

Jan Daisley, president of People with Disability Australia, said: "It is abhorrent that people with disability are left to deteriorate and die in these places while all along paying up to 100 per cent of their income to live in this form of housing''.

The Ombudsman, Bruce Barbour, noted the good work of some proprietors but said resident welfare should not depend on the ''goodwill and favour of individual proprietors.''

 Dr Gabrielle Drake, a researcher and lecturer from the UWS School of Social Sciences who completed a PhD study in 2010 on the deinstitutionalisation of boarding houses for people with mental illness and disability. has long called for the closure of the boarding houses.

Dr Drake says many of the current licensed boarding houses came about as a part of the poorly resourced and poorly coordinated deinstitutionalisation process.

"The result of this process is that people use the majority of their pension to live in boarding houses which are located in the community, yet they still have restricted access to that community and are still denied their right to self-determination," says Dr Drake.

"These homes are effectively still institutions, where the residents must conform to structured meal times, closed kitchens, and a lack of coordinated health care and planning. Too many also experience abuse, sexual assault, fear and intimidation."

Dr Drake says licensed boarding houses are an archaic approach to service provision for people with a mental illness and disability.

"The Ombudsman's Report clearly indicates that the NSW Department of Ageing, Disability and Home Care's (ADHC) procedure for monitoring the conditions in boarding houses has been unacceptable," she says.

"While I support legislative reform and the need for a cross-agency and partnership approach, at the heart of this debate needs to be the realisation that people with disability have the right to live and participate in the community in non-congregate accommodation."

The consequences of social and public policy that transfers the burden of risk and care to families and individuals

Cam McKellar tells a profoundly moving and shocking story about the burdens placed on his mother and family by public policy and social policy driven by economic and market imperatives, bureaucratization and the transfer of risk, responsibility and care to private individuals and families.

My brother has an intellectual disability. He is autistic and he can’t speak. He makes noises and flaps his arms. He’s different and he’s charming. He’s demanding and he needs daily care.

My mother cared for him for most of his life. The sheer intensity of his needs bound them brutally together. 

She feared that if she died, my sister and I would be bound to him in the same way, so everyday she worked to win his independence. 

At first we found small freedoms — a meal without screaming or food flung in frustration; a visit to friends that didn’t end in an apology and a hurried exit; a rare, blissfully uneventful evening out for my mother, a bus ride together, and then years later, miraculously, a ride alone on the bus.
My mother believed in my brother. She loved him and she fought for him. 

If she were alive today she’d still be caring for him and as an aging carer she’d still be ignored by the state and federal government disability services. She’d still be reliant on family and friends to shoulder the burden of care.


She’d be forced by yet another agency to prove and categorise my brother’s disabilities in order to receive the smallest of concessions. She’d be even more exhausted, even more isolated.
She’d be told that in a country debating a super-profits tax, there was not enough public funds available to sustain my brother in community accommodation. 

She’d be turned away because she would continue to cope and would not give up her son.
She’d be turned away because she was not "in crisis". 

As my mother lay dying from cancer, I spent the last precious weeks of her life in furious negotiations with NSW disability services fighting to establish a system of care for my disabled brother.


Last week the Productivity Commission released its draft report into Australia’s disability support services. If the Commission’s recommendations had already been implemented in those precious weeks, our lives could have been so much less desperate. 

As it was, the calamitous reality of NSW’s underfunded disability sector forced me into a terrible dilemma — either abandon my brother to become a ward of the state, or take on his full-time care for the rest of my life. 

This was exactly the same awful predicament my mother faced 30 years ago and spent half her life trying to resolve. It’s the same predicament families and other carers of people with a disability all over Australia face today. 

The Productivity Commission’s draft report confirms that the current disability support system is chronically underfunded. Services are haphazard, inefficient and dependent on irregular state revenues. 

The system is characterised by a siege mentality; carers must literally desert those under their care to receive consistent support. Mindful of state budgets and the intense desperation in the community, workers within the system will only allocate scarce resources to those families or individuals in crisis or where a long-time primary carer has died and there is no one in the family to replace them.

Death of disability advocate and practioner Wolf Wolfensberger

My friend and colleague Erik Leipoldt has written this piece on his blog in memory of the academic and disability advocate Professor Wolf Wolfensberger who died recently. As Erik points Wolfensberger was one of the most influential thinkers and practitioner in the disability field worldwide and his work had a significant effect on the lives of people with disabilities. Wolfensberger's ideas changed  the way professionals, policy makers, governments and service providers think about and respond to people with disabilities.

Erik writes:

"Dr Wolfensberger had a strong commitment to people made vulnerable in a society where individualism, utilitarianism and hedonism reign. He made a huge contribution to people with disabilities. He was a visionary, a devastating analyst and honest critic.

......In 1999, seven major developmental disability organizations in the US proclaimed Dr Wolfensberger one of the 35 parties that had been the most impactful on "mental retardation" worldwide in the 20th century. Dr Wolfensberger's work was also recognised by the US magazine 'Exceptional Parent' as one of the great 7 contributions to the lives of people with disabilities, along with Salk and the polio vaccine, braille, Americans with Disabilities Act and the wheelchair.

.....He was perhaps best known for developing social role valorization theory from his, and Nirje's, concepts of normalisation. Social role valorization has been taught to many using and running disability services, and applied to various degrees, in government policies and service practice.

.........Dr Wolfensberger also developed the concept of citizen advocacy, facilitating long-term relationships between a person with disability (or other vulnerable people)and a volunteer citizen.

.............Many people who have disabilities have benefited from his work in a change in focus from disability as a medical issue, or captives of care to one where a good life means living with others and in settings that are normally valued in our society. His work was instrumental in the deinstitutionalisation of thousands of people with disabilities. It has informed disability advocacy. I am aware that in his own life he personally modeled compassionate service to 'needy people', a much used Wolfensberger phrase."

New Political Party for carers and family members

The Parents Families and Carers Party, which represents voiceless parents, families and carers of Australia, is political party that needs our support.

The party exists to politically represent family members and carers who care for people with disabilities, people with mental health problems, older people and other Australians who rely on family care. The Party has run candidates in previous State and Federal elections.

The Party argues that despite their rhetoric, the main political parties have abandoned parents, carers and families to the market and/or to service providers who are driven largely by provider self interest. They are absolutely correct in that.

The party has a well argued analysis of the problems and a radical agenda for change. This is from its website:

"For more than a century, political parties of both Right and Left have presided over a steady shift in power away from individual citizens towards large corporate and state institutions. In the process, both Left and Right have become defenders of these powerful corporate, institutional and provider interests at the expense of relatively powerless individuals and families.

In government, Left and Right have administered legislative and regulatory regimes that favour large corporations over small business; provider interests over consumers; professionalised and incorporated entities over informal civil society arrangements; state accreditation and licencing authority over voluntary and localised initiative; funded quangos over independent self-funding governance; and impersonal litigation-prone rules and regulations over personal and communal responsibility. As the initiators, enactors and administrators of these regimes, the two major political machines (Labor and Liberal) have become instruments through which powerful corporate, institutional and provider interests uphold and preserve their dominance over society".

You can read all about the Party here at its website. Membership of the Party is free and details for joining here.

The article below is by one of the Party's Queensland candidates.

Political Change in Disability and Health by Pam Maram Queensland National Council Member, Parents Families and Carers Party

I have two teenage sons who rely on the full support of close family to lead as ordinary a life as possible. I have two daughters without disabilities (a lawyer and a social worker) and two sons with disabilities (unemployed and uneducated).

The experience of disability has meant I had to stop working to care at home and have lived on the poverty line for over 5 years. This existence has exhausted all financial resources, and the saddest thing is that my children with a disability have passed through their school years with virtually no education, since there have been no appropriate school options available since day one. My boys will therefore start in the job market with two strikes against them. 1. Poor literacy etc... and 2. the abysmal statistics for employment for people with a disability. A legacy of poverty has been created through no fault of mine as a parent and through no fault of the children who want to try and have not been given adequate support.

I am weary of the fight from the bottom up. Changes need to come through the political process, with the law followed by legislation. De-institutionalisation was important and I would not have had it any other way. But a gap was created as the need for support at home was ignored. This has now grown into a housing crisis with the prisons filling up with people with disabilities. This state of affairs must not continue for another minute.

Our experience to date is that so many of the federal dollars spent on disability are wasted. Much of this money is being spent referring us away from support and building an impenetrable and layered bureaucracy that has left my family on the brink for years. Of late the only program that offers funding for my children with a disability has forced us into the position of begging and explaining and re-explaining their needs - which have not changed in years - to access the funding that is their entitlement. I feel they are wasting the precious resources available but they act like we are the ones wasting the money. Those resources can either make or break this family and to have to beg and be spoken down to is a burden, day in and day out. There is no system, no standards, no empathy and no understanding that being in control of the resources means being in control of the decisions, that, but for the disability, a normal family would make as a family.

There must be a political force to create the change necessary for people with disabilities to be included and to be supported as required by the law and to lead an ordinary life with choice, an education, health care and a place to live free from abuse and neglect.

I do know that without the voice of this Party to direct policy, the decisions made by governments will continue to be made in ignorance. So much money is being spent on the bureaucracy (which is always too hamstrung to make the changes its funding was set aside for) and this is not the intent of it nor does this spending comply with the laws that the money is meant to implement and support.

More money is not the answer, the answer is in how the money is spent and by whom. Speaking as a mum, the journey for people with a disability has been a journey of discrimination, labelling, blaming, a lack of service and a lack of empathy and understanding. But for the children without a disability I would have had no reference point to refer to and I am glad of it, both the experience of raising children with and without a disability. My fear now as my sons grow up is that they have been given a pension and sidelined...but for me.

I am determined not to let resources go to the providers which for us has literally meant no service at all alongside no accountability for the lack of service and more referrals to more no service agencies and at my sons' ages we are talking about dental, mental, health, school and so on...These were a non-issue for my two children without a disability.

Why? Because my sons have a disability and discrimination against them is a daily occurrence even though it is now against the law and yes I am willing to fight to change this.

I urge every other parent and relative and friend in disability and mental health to join this Party and contribute in building up our collective strength. On my own, I am just a solo mum living with two children with a disability. But all of us together, then we can't be ignored.

Book Review: Disability and Euthansia in a Market Society

Gavin Mooney has reviewed this book by Western Australian disability advocate and activist Erik Leopldt. Erik's book is based on his PhD thesis.

A Book Review by Gavin Mooney

Book Reviewed:

Erik Leipoldt (2010) Euthanasia and Disability Perspective: An Investigation in The Netherlands and Australia VDM Verlag Dr. Müller Aktiengesellschaft, Saarbrücken

Each of the two central issues in this book - euthanasia and disability - is big in itself. Bringing the two together is a monumental task and especially when this is set in a values framework. The author succeeds in his efforts to do this and in a way which is both accessible and challenging.

The purposes of the study reported in this book were (p39) `to discuss Dutch and Australian disability perspectives towards euthanasia and physician assisted suicide; and to find how the life experiences of the informants [people with quadriplegia] ... may illuminate these perspectives'.

Yet to me the central theme of the book is not euthanasia as such nor indeed disability. What the book questions in debating these themes is what autonomy is and whether it merits being seen as so much of an individualistic phenomenon as it so often is, at least in this neo liberal world in which so many of us live. As Leipoldt argues `individual autonomy is the dominant discourse of our age'.

Without disagreeing I wonder if things are not changing. I have in the past been much struck by the work of the likes of Catriona McKenzie, Diana Meyers and Natale Stoljar [1] on relational autonomy and the idea of `community autonomy'. Despite the efforts of so many economists today (this reviewer is an economist) - particularly market economists - and many liberal philosophers to see us all as free floating atoms, that depiction of human beings just somehow does not ring true. We are social animals, we rely on others to some extent and maybe even take our identities in part from our interactions with others. And the interdependency of peoples across the globe has been heightened yet further by both the Global Financial Crisis and the threat of climate change. OK the impact of these on government policies and in turn on human relationships have not really percolated through yet. But this is one `trickling down' that I am confident will trickle down.

Certainly Rawls' placing of individuals behind his veil of ignorance was simply a philosophical construct to aid understanding. Yet it is so false that one has to question how valuable that device is in reaching any sort of understanding of what it means to be a person. Behind a veil of ignorance or a free floating atom? In an odd sense, much of a muchness and much of an unreality.

So for Leipoldt to look at euthanasia through the eyes of 28 people with quadriplegia in Australia and the Netherlands provides not only a novel view but one that in turn challenges the notion of individual autonomy in a most useful fashion. Whatever else, no one reading this will ever again see autonomy in quite the same way - unless maybe a person with disabilities.

The views of people with quadriplegia on this issue have not been examined before which is a quite startling revelation in itself. Leipoldt suggests (p38): `The perspective of people with disabilities may be able to contribute new ... aspects to the euthanasia debate. Major physical, social and psychological changes and challenges arise for a person who acquires a significant disability like quadriplegia.'

On the question of autonomy and individualism the shift to more of the latter is highlighted by one respondent (p 170): `people are becoming more assertive and demand more. I think that if you look ten years ahead people's autonomy will go further ... I think society will become more and more individualistic.'

The book is insightful on the issue of dependency with one response (p 205) suggesting that `dependency gives a very deep relationship with people and you'. And again (p 209): `How do we look at things like interdependence, that are the bigger issues? Because it doesn't matter how dependent or independent you are if you have people around you and you are part of what's happening and contributing to that then whether you can do it on your own isn't the issue.' Wonderfully for me, issues of reciprocity, mutuality, participation, sharing and caring shriek out from these pages.

There is a sense in which what this book tells us primarily in capturing the views of a group who are in many ways dependent and vulnerable as people with disabilities are two things. First interdependence and dependence are not negative traits; and second in some sense or other to be complete human beings we need to be interdependent and dependent and we need to recognise that need. These are particularly interesting issues in the very specific context of the main thrust for the author of this book i.e. euthanasia and disability. But for me the book shows that worshipping at the altar of individual autonomy or even individualistic autonomy is to bow down before false Gods. Such autonomy is almost certainly not attainable and, even if were, it aint worth attaining.

This is a powerful book at many levels.

Reference
1. C Mackenzie and N Stoljar (eds) 2000. Relational Autonomy. Oxford: OUP.