[The following message is from Joe Whittaker, supporter and friend of Anthony]
To the thousands of people who have already given Anthony Kletzander support- Thank You.
We now need your financial support to challenge the inexplicable legal action taken against Anthony’s parents, Linda and Siegfried Kletzander, by The Health Service Executive(HSE) of Ireland.
Anthony is a young man with autism, 26 years old. He does not use speech, he communicates very clearly using a keyboard.
( see video above of Anthony meeting with his friend Thiandi who came to visit Anthony from Amsterdam. It was after this visit that Anthony’s parents were told he could have no friends on Nua premises.)
Anthony has already experienced independent living in Dublin.
Now he has been institutionalised in Nua Healthcare by The HSE in Ireland.
As this donation request goes out Anthony is : –
– denied his own communication.
– medicated without his consent.
– forced into unpaid daily farm work (which he hates)
– denied his right to independent living.
There is an active campaign from people around the world in support of Anthony’s struggle.
The Health Service Executive of Ireland have served legal papers on Anthony’s parents, expecting the courts to order a third party to take control of Anthony’s future, with a view to alienating Anthony further from his family and friends and to shroud his treatment into a deeper secrecy, away from critical scrutiny.
Anthony has already been denied visits from friends on institution premises. Such a prospect, that is hard to imagine for a non-disabled person, but ever more restrictions are a frightening probability for a disabled person if HSE succeed in their legal actions against Anthony’s parents.
This is a dreadful injustice against Anthony and a threat to every disabled person in Ireland who do not have access to finance, to hold the, abuse of power, of Statutory Services to account.
There is a very real fear that Anthony could be hidden from plain sight on a permanent basis.
The action taken by Anthony’s family to stop the HSE legal action has already cost the family Euro 2,500, which poses a significant problem for the Kletzander family. If the case goes to the Irish high court , the costs will be considerably higher.
We are asking people to make a contribution to Free Anthony and his family from this injustice : every pound, every euro, every dollar, every cent we receive will be used to continue the legal challenge of the denial of Anthony’s human rights, to live independently, free from institutional interference, free from forced medication and free from forced labour.
The HSE are using money from the Irish public purse, to mount their legal action against Anthony’s parents. HSE use the same public purse to institutionalise Anthony in Nua Healthcare, which we believe to be in the region of €300,000 – €400,000 each year. HSE could use this money to support Anthony to live independently, but they refuse to do so and they refuse to explain their inexplicable actions.
Please support Anthony and his family with your donation:
Every donation received will be used to challenge this outrageous injustice.
Please pass this information on to your family friends and organisations, who will recognise this outrage against Anthony and his parents, desperate to support Anthony’s rights, as a threat to all disabled people wanting to live independently.
DPAC are active supporters of the Anthony Kletzander Campaign
Tweet for Anthony!
Please Help #AnthonyKletzander by joining DPAC in tweeting an appeal for donations for his legal fight for Independent Living. We want to reach a wide audience with this appeal so we have prepared a list of tweets, with hashtags for popular TV programmes, such as #emmerdale, #qi, #OneshowWe have listed each program by day and time along with tweets that you can send – all you need to do is scroll down to the current date and time, and tweet to the programs that you find!The “Tweet for Anthony” Tweetpage is here: http://dftr.org.uk/Songbird.php?TweetFile=AnthonyK
People who don’t use the spoken word have a great deal to say about communication. People who do use the spoken word have a great deal to learn about communication from people who don’t.
Quiet Riot is a group of young adults who don’t use the spoken word. Quiet Riot had their first meeting four years ago. They meet in Manchester but come from around the UK, with members in Holland and Ireland.
Danian Allen (1984-2005)
The communication used by many members of Quiet Riot is known as Facilitated Communication Training (FCT) a strategy introduced into the UK by Marion Stanton, who is currently lead UK Assessor and trainer:
Marion invited Rosemary Crossley, from Australia to meet with families in the UK almost fifteen years ago, who in turn introduced many of the Quiet Riot members to FCT.
FCT is now used very effectively as a primary means of communication by many people around the UK. Using a key board on which to type, a trusted assistant (facilitator) supports the person to manage their body’s motor movements, which can be impaired as a result of sensory overloads/invasions as well as a wide diversity of other body motor issues.
FCT has fundamentally changed the opportunities for members of Quiet Riot:
” I am a man with no speech. I am a user of the pointing method of communication. I listen well and understand what is said… I am operating a perfectly weird body. I am wonderfully made..”
” I’m wondering if using Facilitated Communication will help to understand me better and give me some respect. I wish more people were given the chance to use facilitated communication it is great to be given a voice”
“Having no voice is not great but at least I can type good things. Being in good company like kids who talk. Talking with me makes me happy.”
“Trust your belief in your child. FC opens doors for those of us whose voices deny us use. People have to listen to our voices in the wilderness of disability. I can do things you elevate your expectation to. Look beneath the surface of appearance and see the qualities that are within”
I think FC is such a part of me that its difficult to think of it as an entity in it’s own right. I feel very lucky to have been surrounded by people who respected my communication giving me a limited experience of negativity around FC. I do however know that there are those who dismiss FC, I see this in their faces and reactions. My concerns are for those young disabled people who, for whatever reason, are affected by such situations.
Too bad I was seen as dumb of mind as well of mouth. Words offer all the possibilities of fine choices switching from a non-being to educated in the eyes of the world. The route to my intellect is now open”
” in the end the funny woman from Australia ( Rosemary Crossley) gave direct explanations, we ran away as slow as could be. Facilitation was a map just to find out about going A.W.O.L. I was not seen as a thinker with reason until I used typing. I type to talk differently. It is very good being able to communicate.”
” I am aware that you don’t realise how I am able to type. I go to university. Perhaps one day I will have a part on T.V. And you will have the opportunity to read my fan’s praises.”
Danian Allen (1984-2005)
“To be able to express myself as full as possible, without the correct method my answers are limited ” and “To be recognised as intelligent enabling me to live an independent life in my own home ”
“(FC ) allows me to communicate ,to have a voice.
Way in which it changed my life
I gave my opinion on my medical treatment
I Am Real
I am Real
Not a malfunctioning person with a confused mind
Just a normal thinking person
Who laughs, complains, shows sadness and happiness.
I am real”
Funding, Quiet Riot and the ODI
Quiet Riot campaigned for three years with no funding. Members financed their own attendance at the meetings in Manchester. They were brought together by a commitment, to talk with each other in a safe place, to plan campaigns and enjoy their Right to Communication: a right for every human being. The long term aims of Quiet Riot are to change the ways in which society welcomes and values people who do not use the spoken word.
Quiet Riot has been hosted and given hospitality by Greater Manchester Coalition of Disabled People (GMCDP), since the first meeting. ACE North, have also provided a venue for larger gatherings, again free of charge.
In our fourth year the The Edge Fund, a creative and democratic funding body, offered funding to Quiet Riot* which is being used to enable Quiet Riot to develop a customised website where they can reach out to local and global connections giving more people an understanding of FCT and an opportunity for the many people around the world who are needlessly denied their voice.
Funding for groups, at the “cutting edge” in societies, like Quiet Riot, is an important political issue. Given that the very existence of Quiet Riot provides a powerful reflection of people who have been failed within their own society. Quiet Riot has emerged despite statutory organisations who have failed to serve their legitimate support requirements.
The name of Quiet Riot appears to be a challenge for some, which was illustrated when Quiet Riot considered making a funding application to Office for Disability Issues (ODI), a government, established body to orchestrate the voice of disabled people in the UK. Quiet Riot was invited to change the name, to one less controversial ! – perhaps F— O– might be more appropriate! We have no funding from any government agency, which allows a freedom to critically question and challenge government and it’s agents, which has to be an essential feature of any campaigning group.
Quiet Riot members now in their twenties and thirties have each had the powerful support from their families, to have their voice heard, often against significant opposition from schooling authorities. An important lesson for schooling services to learn is that labels attached to any individual cannot convey anything of value about an individual. Such labels lead teachers into a cul-de-sac about an individual, requiring a great deal of time trying to find a way out.
Meaningful appreciations of another person’s skills, contributions and qualities will emerge via a mutual and respectful relationship. Such relationships can start with mutually respectful communication. The early schooling experience for many QR members was in segregated settings and very far from respectful :
“Special education is a cruel solution to educate people like me. I had the label (PMLD ) evil! I asked real people if they are aware of atrocities in school. Ask and ask again was anyone aware how awful it was doing stuff in special school. Emphasise it. The school system was a a vert (lawn) where seeds of alarm flew away. No one sussed what a serious affaire was swept away under the alters of Abraham . I was a walled prisoner in my own world dying slowly. When I returned from school each hour I sat thinking- give me a tool to communicate”
“Special school you think is bad. It is the nondescript way they teach is dull. They only had lots of detritus to share.”
The health service starts the process of diagnosis and categorisation of disabled people by creating labels that the schooling system uses to segregate and devalue disabled people. Authorities engage in convoluted assessments, measuring and testing the “capacity” of individuals. The disabled person is incidental to this process: it is an institutional response to legitimise prejudice and discrimination against a disabled person.
“I have no sex no gender apparently I only have this alleged affliction. reports and labels are the sum of my parts. There was never a label beyond disabled.i am just punk I am just an allocation of resources.”
Paul Thomas Allen
Institutions continue to segregate and devalue the human being as they have done for many decades.
” I have sorrow in my heart for you not learning the proper inclusion of me.”
Segregation at school age will tend to lead to more segregation in adult life – feeding the “services” that exist for the maintenance and protection of the institution and its processes.
Labels of “deficit” are attached to the individual and reflect the approach of an institution. We need to shift these labels away from the individual to the institution. Therefore, the constant need for institutions to measure and categorise people could be described as Obsessive Compulsive Disorder (OCD). Some Schools, Colleges and Universities have Profound and Multiple Learning Disabilities (PMLD) because they have failed to welcome and learn from people they continue to reject and exclude based upon the negative differences the institutions have determined and cultivated. This is particularly true of people who do not use the spoken word for their communication.
“In my pupil days at home I learned children whose bodies operated differently were not welcome really anywhere in the high schools in the myopic time we lived in. I thought then real choice was just for those talking people”
“Being alone I feel Dead”
It is soul destroying to continually have your contributions and efforts for participation thwarted by systematic indifference, ignorance and rejection. Such an approach to people is abusive and a total denial of their human rights. There continues to be a disturbing amount of confusion around the language and practice of inclusive education. We cannot give people inclusion, people have to Feel included.
” I invite experts to ask how we feel and our opinions. Autism really offers the world a fine lesson in humanities We require understanding, respect trust and love. In return we test the worlds ability to accept differences that exist between people ”
We know inclusion is working up and down the country in schools, colleges and universities for people with the diversity of impairments. We know people are included when we change the way we offer support in response to an individual’s particular requirements and when there is a welcome of difference and different voices for people to participate and contribute to the learning environment they are an integral part of.
” I would like to take this opportunity to say thank you for your accommodating and satisfying subject in question. There was very much calm and confident re-assurance surrounding me when in your real lecture of thought and wisdom. For me acceptance is from within a massive heart. Please have diversity bring you good joy in real life. With very fond and great thoughts for life – To Lesley Groom University Tutor from Heathar Barrett.
Hope and acceptance are a luxury I do enjoy. I feel very immense greatness about the university of my love and life in the making of a good great free future. We are moving forward.
“Taking The Time”
The thought of starting was ecstatic,
I wanted to learn so much.
To me the building was magic,
With life in its crumbling husk.
The thought of being ordinary,
Filled me with a joy I can’t tell.
Still the thought of that building keeps memory,
For me of pure water: a well.
It was because I had ordinary teachers, who recognised that I had skills, that I am where I am now, doing English at university. The special education system did not do that for me; it endlessly measured my incompetence.
However, when a school refuses to change, to welcome and accept different ways of learning, it cannot be overstated just how oppressive it is to be seen as different, when your difference is devalued by the organisation that claims to be a place of learning!
“It should be perpetuated that I have no differences. I just need really cool people to understand my ways. I am in my difference the despoiler of your pattern”
Paul Thomas Allen.
“I’m really tired of being different”
For people who do not use the spoken word there can be a continual and exhausting struggle to have your voice heard. For many people with the label of autism who use FCT, there can be a massive amount of time and energy required to overcome or manage their bodies’ sensory changes in order to type each and every word.
I am finding it very hard to be a free fast user of FC when I am not focused on feeling anxiety free”
communication board in hand doing ordinary things like buying an ice cream. This does not require a “transition plan” or “a service delivery audit” Or a specialist training programme to create a team of ” Whippy Therapist”
Heathar using her communication aide on a walk across the moors.
Again no “specialist service” getting in her path.
“I am an individual with my own wants. Sometimes my neurons do screw up and it takes time to fix them.”
Paul Thomas Allen
” being autistic causes sensory problems like bright lights which makes me feel dizzy and they burn my eyes. I also have problems with loud noises. They really scare me and make me feel really nervous”
“People inspire me all the time. It’s the easy things I envy like people who are pain free”
The only way we can get near to understanding what is required for an individual to type whilst having to manage the permutations of sensory invasions, which could relate to all the senses and more within any given learning environment, is by being respectful and responsive to the individual. Having a mutually respectful communication is essential.
As for what we can do to encourage change in Universities, I think there is a wider issue here. If FC is not accepted as a means of communication during examinations, as it was when I did my GCSE’s and A levels, then the next generation of disabled academics are thwarted in accessing university through such academic routes. The universities are poorer places for not having a fair representation of all students in their Halls and of course where we are never seen we are never easily accepted nor understood
Professionals have a responsibility to shift their lack of understanding or toleration of ignorance about different ways of communication and recognise that the denial of a person’s communication is not simply the denial of a learning experience but the consequences can be life threatening.
Anthony Kletzander from independent living to institutionalization
Anthony Kletzander, one of the founder members of Quiet Riot lived independently in Dublin in his own flat, with his own 24hr support. Because people, uninvited came into his life and chose to deny his FC, he was forced into an institution after he had experienced a full life living independently, with his own support staff. Within days he was given antipsychotic medication against his wishes, this resulted in emergency hospital treatment. Anthony’s voice continues to be denied at the institution.
“Tell them to stop giving me medication. I have no choice it makes my head feel strange”
“I would love to be in independent living. It is much better than residential.”
“Really trying to be accepted into society is very difficult and I am really saddened by this”
This is the clip about university. Nua Health Care in Ireland refuse to accept Anthony’s communication. They have also refused his right to independent living. Anthony was hospitalised twice from this institution over a period of three weeks. Anthony’s struggle continues made more difficult by Nua Health Care continuing to deny Anthony’s voice.
Anthony Kletzander. Typing with Marion Stanton just half hour after meeting with her. Nua Health Care refused her offer of support.
He watches, and you are scared.
Mute and Flalling
If he could talk he would tell.
So you silence him.
Maresa uses facilitated communication on her graduation day at Nottingham Trent University.
People who are prepared to deny a person’s communication when they don’t offer a meaningful alternative are abusing a person’s Human Rights.
It is an abuse of the power and authority of a psychologist or therapist to * deny a person’s means of communication, then have the effrontery to accept, a large fee, to carry out an “assessment” and make judgments and recommendations about the person’s life with whom they insist they cannot communicate!
” I have spent every day since birth when people think my head is bad like my body. Top physicians from all over came to inspect the Allen family, every one of them you imagine a certified genius. They ran me through their tests prosecuting me with steal augers. Pain like real despicable pain. Played with and investigated all facts collated their only conclusion was to find I was guilty. I was dense and better as a doorstop. I inhabited my own head just watching, I had to live the isolated life. I had to wait …. It did not occur to the world I am not retarded and a vicious anger I was cultivating. In my egg I stayed. In my soft manner to wither, it was sometimes insanity”
Paul -Thomas Allen.
I am unable to pronounce what thoughts are in my mind. When I use facilitation I am able to let others know how I feel. This is undoubtedly beneficial for my peace. Past appearances of the disabled are wrong. What people pronounce does not show how clever they are. I think it is because writing allows people to say exactly what they want. People make assumptions
Damian Allen ( 1984-2005)
Quiet Riot, DPAC and challenges powers and practices
Quiet Riot is an organisation that offers a much more powerful future for the person who does not use speech but insists that their voice is heard.
There is also a growing new network of organisations of disabled people in the UK and internationally who are challenging the oppressive practices and asserting the human rights of disabled people. It is co-ordinated by Disabled People against the Cuts (DPAC) This New Democratic and transparent approach is not seeking to justify the participation of disabled people around the UK but fundamentally challenging the powers and practices that seek to prevent their contribution and participation.
Facilitated Communication has enabled members of Quiet Riot to challenge the powers and practices that seek to silence people that do not use the spoken word.
Quiet Riot are engaged in subjects like: Biology, English literature, Creative Writing, Poetry, Philosophy, Jewish Religious Studies, Music, Geology, Ethics and Human Rights at Universities around the UK, Ireland and Holland. Thiandi Grooff a member of Quiet Riot and uses FC is in her final year of undergraduate study at a University in Amsterdam. She has been been engaged in a detailed qualitative study into group identity.
This study shows that a safe place for discussions is very important: the participants are welcomed, without threat by opponents who reject their way of communicating or the State, and every effort is made to overcome barriers to speaking. In this study the benefits of the collective identity for the members of the group ( Quiet Riot) were clear: a more powerful personal identity and self-esteem that led to more courage to speak up and to engage in relations and actions outside the group.”
FCT is used by increasing numbers of people around the world and with whom there is a growing connection via the internet. A powerful collective voice is emerging and demanding their space to be heard. It is a voice to reckoned with
Joe Whittaker April 2014
With many, many thanks to the great guys at Quiet Riot for putting this together and to Joe-DPAC fully support Quiet Riot and FCT.
The European Network on Independent Living is calling on disabled people’s organisations across Europe to mobilise together on or near Monday 5 May 2014 through events, lobbying and protests to oppose the deep and ongoing cuts affecting disability services and benefits.
As disabled Independent Living Fund users, close family members and allies campaigning to defend independent living rights and stop the Fund’s closure, we urge disabled people’s organisations and the broader disability movement in England, Wales, Scotland and Northern Ireland to actively support this important day.
Even small events and public activities will help to raise awareness and act as a focal point for those who want to work together to oppose cuts to services and benefits, including the proposed closure of the Independent Living Fund in fifteen months.
It is vital that we also use this opportunity to reflect and learn from the mistakes associated with the public service reforms of a decade ago and the policies of ‘welfare reform’ and ‘personalisation’, including the use of ‘tick-box’ processes such as the Work Capability Assessment and the Resource Allocation Systems in social care to replace the individual and detailed assessment of need.
The fear of a ‘demographic time-bomb’ associated with growing numbers of older disabled people in their eighties and nineties, creating an age imbalance in a static or falling population, has been used to justify the raising of the pension age and the way pensions are calculated, the erosion and privatisation of the ‘welfare state’, cuts to health and social care, changes to the benefits systems, and latterly ‘austerity’.
But a growing population associated with increasing birth rates and the immigration of young adults, improved productivity and the greater fitness and activity levels of older people means the ‘demographic time-bomb’ in Britain may be a myth.
The political climate that has undermined independent living and disability rights, and is using positive ideas such as ‘direct payments’ and ‘individualised funding’ as vehicles for shifting financial responsibility for meeting social care needs from the state to the individual needs to be challenged.
We should no longer ignore the needs of the tens of thousands of children who are compelled by their family circumstances to be ‘young carers’ or the four hundred thousand disabled people confined to residential care or the way new concepts such as ‘prevention’, ‘reablement’ and ‘recovery’ are used to deny hundreds of thousands of disabled people the services they need.
Those who argue disabled people have been ‘liberated’ and the welfare state is ‘broken’ are wrong, and only do so in pursuit of a very negative agenda associated with privatisation and greater inequality between the ‘haves’ and ‘have nots’. The same people have been passive while the Independent Living Fund has been dismissed as ‘anachronistic’ and ‘paternalistic’, and the experience and wishes of the Fund’s users and their families ignored.
The disabled people’s movement across England, Wales, Scotland and Northern Ireland has a proud history of campaigning for independent living rights, but the gains of a generation ago for disabled people of working age are now under threat, as are the social opportunities pursued by many disabled people with complex conditions.
The innovations of the ‘independent living movement’ such as the ‘personal assistance’ approach, specialised information and training, and the self-assessment of personal needs have been marginalised. While our organisations and projects have struggled financially since the millennium, tens of millions of pounds have flowed towards those who supported the development of ‘personalisation’ and its ‘evidence base’.
But what is perhaps worst of all is many of those severely disabled people who have assumed the demanding responsibility of organising and managing their own complex personal assistance support, and do so fifty-two weeks a year without any financial rewards, are defined as being ‘economically inactive’.
A jigsaw of social equality has been slowly constructed since the end of slavery and the emergence of the Chartists through the right to vote, women’s suffrage, universal healthcare, the legalisation of same-sex relationships, reproductive rights for women, equal pay legislation, and the outlawing of racism and homophobia.
Limited advances in tackling disability and age discrimination are now being reversed, with the statutory right to an individual assessment of need by local councils being replaced. Local authorities are to be given the power to restrict a disabled person’s rights or freedom of action in pursuit of a legal duty to prevent or reduce a person’s need for social care services or personal assistance.
Social equality for all will never be achieved unless the needs of disabled children and adults are acknowledged, assessed and met as of right, and those children and young people compelled into a caring role within their family because of a lack of social services support are freed from this and allowed to develop socially in the same way as their peers. But this would require an unparalleled redistribution of wealth, and the redrawing of our society’s social priorities.
We believe disabled people of all ages should: have the right to live in the community free of the threat of segregation; be supported to stay healthy, safe and free of distress; and be freed from the harsh means-tests that are a feature of social care. Young disabled people in particular should be supported to pursue their dreams and aspirations free of the social barriers and discrimination that impeded many in the past. And because of the vital social role played by full-time family carers, they should be paid a social wage of at least fifty percent of the average wage of a skilled worker.
Our movement has a collective responsibility to defend the gains we have made, and renew its commitment to campaign for full civil and human rights for all disabled people and their families.
The ‘European Independent Living Day’ is an opportunity we should not waste.
Abi Vanes, sister of ILF user
Aine Young, family of ILF user
Andy Greene, Islington Disabled People Against Cuts
Angela Mountstephens, sister and carer of an ILF user
Ann Walawalkar, parent of an ILF user
Anne Novis MBE
Anne Pridmore, ILF user and Director of ‘Being the Boss’
Anne Rae, Chair of Greater Manchester Coalition of Disabled People
Ann Rainey, ILF user
Anne Whitehurst, ILF user
Ashleigh Myatt, personal assistant
Bill Riddall, Centre for Independent Living Northern Ireland
Brian Glaves, family carer and husband of ILF user
Brian Hilton, ILF user
Bob Ellard, member of Disabled People Against Cuts
Brenda Bayliss, mother of an ILF user
Caroline Martin, mother of an ILF user
Cath Gibson, ILF user
Charles Rainey, brother and carer of an ILF user
Christine Pickthall, ILF user
Christine Squires, ILF user
Christine Stringer, parent of an ILF user
Clare Palmer, mother of an ILF user
Colin Griffiths, ILF user
Colm Murphy, family of an ILF user
David Vanes, brother-in-law of ILF user
Debbie Domb, ILF user
Debbie Jolly, co-founder of Disabled People Against Cuts and Board member of the European Network on Independent Living
Anthony has the label of Autism, he does not use the spoken word but he is able to communicate very effectively through typing on his light writer. Anthony’s struggle for independent living highlights important issues for all disabled people, living in Ireland and Europe who have a human right to independent living as per article 19 of the UN Convention on the Rights of Persons with Disabilities.
The catalogue of mismanagement and abuse outlined below demands a full and independent enquiry into the unacceptable experiences of Anthony.
For almost three years Anthony (now 26) had his own apartment in Dublin, he had 24hr personal assistance, and he was attending university classes. His support was managed by Cheshire Ireland, who fully accepted and welcomed Anthony’s communication and his voice. Cheshire Ireland managed the funding for support for over two years, which was provided by Health Service Executive of Ireland (HSE).
However, without consultation with Anthony or his Family a new organization took over Anthony’s support arrangements Áiseanna Tacaíochta Network (ATN) This organization was imposed upon Anthony and his family by HSE.
ATN did not accept Anthony’s communication, which caused a breakdown of Anthony’s support arrangements, including the Director informing Anthony’s parents that he had completed the necessary forms to have Anthony’s personal disability benefits paid into ATN accounts; this was without consent or consultation with Anthony or his family. As a result Anthony’s personal disability allowance was suspended. (Leaving Anthony without his own money for 10 months). After six months of ATN management the director had a private meeting with HSE to recommend Anthony goes into residential institution for further assessments.
Anthony and his family opposed such a retrograde step. At the same time ATN took the bizarre step of refusing to renew the rental agreement on Anthony’s accommodation, which resulted in Anthony being made homeless. He therefore had no meaningful choice but to accept the residential assessment at Redwood Centre, Stamullen in Ireland.
Within days at Redwood Anthony was put on antipsychotic medication and taken off his important gluten and diary free diet, against the strong protest of himself and his family, and against medical advice of Anthony’s own doctor (GP). Redwood ignored these representations. A few days later Anthony was admitted as an emergency patient from Redwood to a general hospital having had a series of nine seizures. Anthony had never experienced seizures prior to being admitted to Redwood.
Redwood also refused to accept Anthony’s communication needs and after several months, still on the same medication Anthony was refused the right to attend his own case conference at Redwood by Redwood senior staff and by HSE.
Anthony was removed from Redwood in December 2013, but is now at another institution, as the option of moving back into his old accommodation is no longer available to him due to the actions of ATN.
Redwood has refused to comment on Anthony experience whilst at Redwood.
HSE has refused to comment upon Anthony’s experience at Redwood.
ATN has refused to comment on Anthony’s experience at Redwood or their actions.
All involved appear to deny responsibility for any of the severe impacts on Anthony’s life or the removal of his right to live independently through their actions.
Anthony and his family want a full and independent enquiry into the unnecessary and unacceptable actions leading to this total abuse of Anthony’s human rights.
Important Questions for the Health Service Executive:
1. Why did the HSE change Anthony’s support arrangements to ATN without consultation with Anthony or his family, prior to those arrangements being completed?
2. Why did the HSE allow ATN to take over the management of Anthony’s support arrangement when ATN had not consulted with Anthony of his family?
3. Why did the HSE allow ATN to stop Anthony’s personal disability allowance without any consultation with Anthony of his parents?
4. Why did the HSE allow ATN to end the rental contract of Anthony’s accommodation without Anthony’s or his family’s permission?
5. Why did the HSE accept the recommendations of ATN, for Anthony for residential assessment when ATN failed to discuss such a recommendations with Anthony or his family?
6. Why did the HSE allow Redwood to administer Antipsychotic medication and remove his gluten and dairy free diet to Anthony without his permission and against the advice of Anthony’s own family doctor and parents?
7. Why did the HSE not explain to Anthony or his family why he was admitted as an emergency patient to the general hospital?
8. Why did the HSE refuse to allow Anthony to attend his own Case Conference at Redwood?
Friend of Anthony
Please email Joe with messages of support to pass on to Anthony, or if you can help in any way please contact Joe.
As a grassroots campaign group DPAC wouldn’t exist without the dedication of all those who give their time to exposing what is happening: coming out on the streets, writing reports, researching, writing web content and policy critiques, heading up and being part of the growing number of local DPACs, organising events, engaging with social media and a whole set of other stuff that keeps DPAC vibrant, active and strong – its thanks to you that DPAC exists. DPAC also want to thank the growing number of grassroots groups, individuals, academics, supporters, unions and organisations we’ve worked with in 2013.
2013 began with DPAC being awarded campaign of the year for our work in 2012 the year ends with DPAC being named as ‘people of the year’ by Owen Jones. In 2013 DPAC supported many local based protests on transport, the bedroom tax, ILF, local authority cuts and privatisation. We blocked roads protested against fuel poverty, fracking, the loss of legal aid, the bedroom tax, the closure of ILF and more. We set up Reclaiming our Futures 7 days of action joined by hundreds to celebrate the gains of the disabled peoples’ movement and to protest at the effects of imposed austerity on disabled people. DPAC launched the UK Disabled Peoples’ Manifesto which was followed by an EDM.We also published a number of reports.
There was cause to celebrate: the Government were ruled to have made the decision to close the Independent Living Fund unlawfully. Mental Health Resistance network succeeded in winning both case and appeal by the Government on the discrimination of the WCA. DPAC were approached by the UN prior to Raquel Rolnik’s UK visit to feed-in –her findings on the bedroom tax were devastating for the Government. DPAC led a whole range of events and join events on benefit justice to join together and fight the evils that this Government have imposed. While every protest, every campaign, every new network and every exposure of this Government is a success, we received growing numbers of emails from those left without money, food, homes and suffering cuts to their support.
In 2014 we must continue to fight and take all actions we can to change and expose the devastation this Government is causing to disabled people.
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Key highlights of DPAC actions from 2013 below….
DPAC were awarded campaign of the year (2012) by Lipstick Socialists. They said: The fight back by disabled people as the Con/Dem Govt stripped some of the most ‘vulnerable’ sections of the community of their benefits. Their campaign against Atos (who made the decisions) during the Paralympics was inspiring and they have led the way in the fightback against the Con/Dem Govt. – See more at: https://dpac.uk.net/2013/01/#sthash.tEoKp2ds.dpuf
Co-op Campaign: stop the Atos Contract! Launched to publicise that Co-op were thinking of renewing a three year Atos contract for occupational health-Eventual outcome Co-op publically state they wouldn’t renew the contract with Atos.
DPAC call Vigil on Judicial Review initiated by Mental Health Resistance Network on WCA
Benefit Justice organising meeting by Tenants, DPAC unions and others held in London. We also live streamed London DPAC meeting so that everyone could access it. Annie Howard exposed Atos and DWP in relation to the data protection Act https://dpac.uk.net/2013/01/dwp-and-atos-make-a-mockery-of-the-data-protection-act/ Alan Shellbrooke a Tory MP said he wanted to introduce US style cards for those on benefits. We also linked with Fuel Poverty Action for the first of the 2013 actions on Fuel Poverty. We urged everyone to have their say on the Care Bill and to mention the ILF issues and posted advice on the Bedroom Tax and Discretionary Housing Payments and how to access them ahead of this inhuman misery. Condemn Love anti-Atos song by the excellent Kevin Robbins got it’s first airing
We publicised the workfare cases The judgment on cases brought by Cait Reilly and Jamie Wilson mean that all but one of the Government’s workfare schemes (Mandatory Work Activity) that force unemployed people to work unpaid or lose benefits have been deemed unlawful. As we know IDS went off and rewrote the law- See more at: https://dpac.uk.net/2013/02/#sthash.jZLw1k5A.dpuf
We publicised an update on the Bedroom Tax, unfortunately not rewritten by IDS or anyone else. The post by Frank proved to be an unfortunate prediction of what was to come.
As DPAC is on the working group of the European Network on Independent Living (ENIL)against European austerity and its effect on disabled people we asked you to write to your MEPs to supporta push to get this debated in the European Parliament
March 13th was the court case on ILF in which 5 ILF users took the DWP to court against the proposed closure of ILF in 2015 We stepped up the campaign to publish stories of ILF users and those that would have benefited from ILF if it hadn’t been closed to new users in 2010 by Miller without even a dodgy consultation process. https://dpac.uk.net/independent-living-fund/
The Benefit Justice Summit co-organised by DPAC in London brought together unions, grassroots groups, lawyers and tenants groups
John McDonnell puts forward an Early Day motion on the UK Disabled Peoples’ Manifesto put together by DPAC, Inclusion London, ALLFIE and Equal Lives Norfolk
Early Day Motion 483: Disabled People’s Manifesto
That this House warmly welcomes the launch of the UK Disabled People’s Manifesto, Reclaiming our Futures, developed by disabled people and their organisations across the UK, which sets out the shared vision of disabled people for an inclusive and equal society free from economic, social and cultural barriers; and urges all political parties represented in this House to engage in a constructive dialogue with the disabled people’s organisations promoting the manifesto with the aim of achieving its objectives. – See more at: https://dpac.uk.net/2013/09/early-day-motion-483-disabled-peoples-manifesto/#sthash.VWGXvrlo.dpuf
DPAC host art exhibition and night of entertainment, plus a day debate on the continued relevance of the Social Model with Anne Rae, Colin Barnes and Debbie Jolly
The Brilliant Kate Belgrave writes on protests and Government Extremism, protests are held outside the DWP, the Department for Education, the Department of Energy, and the Department of Health before moving on to Parliament to host the launch of the UK Disabled People Manifesto: ‘reclaiming our Futures on the UK Freedom Drive day part of the Reclaiming Our Futures week of action
Two of the DPAC co-founders go to Strasbourg to join the European Network on Independent Living for the 6th ENIL Freedom Drive to march to the European Parliament and tackle MEPs. Debbie Jolly is elected to serve another term on the ENIL Board and presents on behalf of DPAC on protest and what is happening in the UK under imposed austerity http://www.enil.eu/campaigns/freedom-drive/
Government lose appeal against decision that WCA discrimates against those with mental health issues.The Mental Health Resistance Network (MHRN) who instigated the case against the WCA celebrate another victory. MHRN a grassroots group were later joined by the charities, but without MHRN the case would not have got to the courts. https://dpac.uk.net/2013/12/victory-against-wca/
1. Government’s plans for the future of the Independent Living Fund
On Monday 18 November, Plaid Cymru MP Hywel Williams will ask the Secretary of State for Work and Pensions Ian Duncan Smith:
‘What plans he has for the future of the Independent Living Fund.’
It is unclear what the Government’s response will be, but the question will be asked at 2.30pm.
It will be live on the BBC’s Parliament channel.
2. Sad News From Norway
We regret to report the sad news of the death of Bente Skansgard, the former President of the European Network on Independent Living and founder of ULOBA, a self-organised personal assistance cooperative with about 1000 disabled members throughout Norway. The following links to articles on the European Network on Independent Living web site provide more information about Bente’s life and work:
Anyone wishing to express support for Pam can do so on Facebook at ‘Pam Duncan for Falkirk’.
4. News from the Independent Living Fund
Following the Court of Appeal’s quashing of Esther McVey’s decision last year to close the Independent Living Fund (ILF), the DWP has stopped all processes within the ILF associated with preparing the Fund for closure. This is consistent with the Government’s assertion during the legal challenge to the ILF’s closure that no irreversible decisions or actions would be taken until 2014.
The ILF has suspended the Transfer Review Programme (TRP) that began in April 2013. It has instructed local authorities to destroy all information gathered so far during reviews that have taken place of ‘Group 1’ users that they did not have contact with previously. Consent for the data shared was specific to the TRP, therefore local authorities no longer have permission to keep it.
An ILF user is in Group 1 if they first received funding from the Independent Living Fund before 1 April 1993. While many have since 1993 approached their local authority for additional support on top of their ILF funding, there are hundreds of ILF users who have never had contact with their local social services. Any files on Group 1 users, who only have contact with ILF, that have already been handed to Local Authorities must now be destroyed.
The ILF is writing to all Group 1 users this affects. The ILF will also be writing to all its users to explain what will happen next. If there are any significant developments, the ILF has a ‘News’ section on its web pages through which it issues any statements or information. This can be found at:
5. DWP’s response to the Court of Appeal judgement
On 6 November, the Department for Work and Pensions issued a short statement through the ILF News page about the Appeal Court judgement which included the assertion:
“The judgement upheld the Department’s position on the consultation exercise itself, accepting that it had been carried out properly and fairly. They found that more documentary evidence was required to demonstrate that the Minister for Disabled People had considered all parts of the public sector equality duty fully.”
This is not an entirely accurate representation of what the Appeal Court said.
Information about the judgement can be found on the web site of solicitors Scott-Moncrieff Associates at:
It has also been published on the web sites of: Inclusion London, Disability Action In Islington, the European Network on Independent Living, We Are Spartacus, Disability Wales, The Hardest Hit Campaign, Disability Wales, Independent Living In Scotland, Learning Disability Alliance Scotland and the Sisters of Frida. The statement has also been published by a number of blogs including False Economy, and the Scottish Campaign For A Fair Society and National Shop Stewards Network.
Tanvi Vyas, Trailblazers Project Manager following the judgement said:
“We are delighted that the Government are not appealing this decision and will be reviewing it’s future based on further advice. However we would urge the Government to secure the future of the ILF as it is a lifeline for many disabled people who lead active independent lives. Many other disabled people could benefit from this, and the fact that future applications have closed is to the detriment of many disabled people who want to lead fulfilling independent lives.”
•Disability Now article featuring support for the Appeal Court victory from John Evans, one of the founders of the independent living rights movement in Britain, who said:
“I was surprised by the judgement because I was expecting the worst. We’ve had such a drastic and terrible five or six years. I’d painted a really black picture so this has made it even better for me. I’ve got nothing but admiration for those five people who put their lives and bodies on the line, who took the government to court, damaged them and won.”
•An agnostic article by Rich Watts on his Arbitrary Consent blog which manages to combine welcoming the Appeal Court victory with the defence of Melanie Henwood and Bob Hudson’s appalling ‘independent review’ of the Independent Living Fund in 2006 which recommended it should close given the planned introduction of personal budgets, a key component of the ‘personalisation’ policy. Watts blog will no doubt have been welcomed by his employer, the quietly influential National Development Team for Inclusion, because if the rationale and methodology of the Henwood/Hudson report is ever scrutinised and discredited, it would throw the door open to a re-examination of ‘personalisation’ and its consequences, and the role of those who have developed and championed it:
Join this year’s week of action to protest against austerity, fight for our rights and celebrate disabled people
From 29th August – 4th September DPAC and other campaigns will offer a range of activities you can get involved in. These events will bring together our anger at what is happening now, and celebrate our victories won, both in the past and to come.
Our rights are being stripped away day by day, by the neo-liberal policies being imposed on us all by the Condems, leaving us without much hope for our futures – or our children’s.
We have been here before. Our history is littered with examples of how our community has come together when under attack to fight – and win. From the early campaigns of NLBDP (National League of Blind and Disabled People) through to the founding and manifesto of UPIAS (Union of
the Physically Impaired Against Segregation) and on to DAN (Direct Action Network)- Now we have DPAC leading direct action and a host of other key grass root campaigns working towards reclaiming our rights and futures.
We have fought our corner over 3 centuries. And those fights have brought victories; the Independent Living Movement, our early CILs (Centres for Independent Living) and early active DPO’s (Disabled Peoples Organisations) and the significant rights for disabled people (which are now under attack). They represent big victories, brought about by mobilizing in our communities around our common cause – and having the will and determination to see our demands met without compromising our rights. We have consistently united in anger and celebration.
Download easy read information about the week here:
This autumn, we are asking our community to come together in anger, and celebration again – and to unite around our demands
We will be launching the UK Disabled People’s Manifesto setting out our vision of how the resources, structures and institutions of our society today can be re-designed to empower disabled people to take part in life on our terms. Disabled people are, and always will be, the experts on our lives and our self-determination. It will be a vision and practical plan that we can take forward in our communities, workplaces and lives to reclaim our futures.
In the build up to the manifesto launch, DPAC is leading The ‘Reclaiming Our Futures’, seven days of action to protest against the targeting of disabled people by austerity measures, to fight for our rights for inclusion and independence as equal citizens and to celebrate the value, pride and self determination of disabled people.
From 29th August – 4th September DPAC and other campaigns will offer a range of activities you can get involved in. These events will bring together our anger at what is happening now, and celebrate our victories won, both in the past and to come.
The plan below is only half the story. We want YOU, your Deaf and Disabled People’s Organisation, your campaign group, your community, your friends to put on events and get involved too. Can’t get to our exhibition? – then put on your own. Can’t get to our direct action? – then do your own. Barbecues, debates, quiz nights, family days, picnics – whatever! ACT – in celebration or in anger! (PS don’t forget to let us know what you’re doing).
Day by Day: 29th August-4th September
Thursday 29th August – YOU launch our 7 days of action
A range of resources will be available for your use as we ask all supporters to start our week of action with an online blitz. You will be the ones creating the buzz and the hype sending letters and twitter messages to targets of your choice ranging from MPs to disability charities to the media. We will be producing twibbons and memes but make and circulate your own. If you haven’t got a Social Media account (such as Facebook & Twitter) set one up now, link to DPAC ( twitter: @Dis_PPL_Protest) and let’s create a cyber wave. #dpacrof
Last year during the ATOS Games over 30 local actions took place around the UK Local actions mean you get to choose the target of your choice. You could take the Reclaiming Our Futures manifesto to present at your local MP’s constituency office, spread it through social media, protest on the streets against segregated education, the proposed ILF closure or show solidarity at your local Remploy site (for those few factories in their last weeks of operation). Alternatively, you might want to lobby your local Council on the Bedroom Tax and cuts to local services/support. Oh, and as we know ATOS offices are still around too….we’re sure you have other great ideas to add… Remember to let us know what you are doing so we can promote your actions. We will be producing local action resource packs but any materials you develop please send us copies to share with other protests and online.
Saturday 31st – Disability, Art & Protest Exhibition and Fundraising Gig
An exhibition and sharing of work exploring disability, art and protest followed by a ticketed fundraising gig run in partnership with Madpride and Tottenham Chances. Come during the day and join in our banner making workshop to prepare for the big Freedom Drive on the 4th September. If you would like to nominate an artist, collective and/or piece of work please let us know (including any links) and we will try to get them involved. If you want to do a local, street or online art protest too-this could be the day to do it.
Venue: Tottenham Chances, 399 High Road, London, N17 6QN Times:
12 – 7pm Exhibition: disability, art and protest
1 – 3.30pm Banner and placard making workshop
4 – 6pm Work Sharing
7.30pm till late Gig
Sunday 1st September – Reclaiming the Social Model: the social model in the 21st Century
Anne Rae: former UPIAS and current chair of the Greater
Manchester Coalition of Disabled People (GMCDP),
Colin Barnes: Professor of Disability Studies at Leeds Centre for Disability Studies
As government and the private sector increasingly use a so-called ‘modern understanding of disability’ to redefine who is and who isn’t disabled it is more important than ever that we understand, defend and promote the social model of disability. This isn’t helped when the social model is not fully supported within our movement. This event will be a chance to hear from a range of speakers and to discuss why the social model is still relevant today to our lives and our futures and to map out what we need to do to fight for it. The event will be live-streamed with the opportunity for people to participate in the discussion virtually. We will also be promoting a range of resources around the social model.
UNITE House, 128 Theobald’s Road, Holborn, WC1X 8TN
Time: 12.30 – 4.30pm
Monday 2nd September – Direct Action
Despite the huge efforts of thousands of disabled people throughout the country, it is increasingly difficult to find spaces where lies, inaccuracies and mis-use of statistics can be challenged. DPAC recently released a study into how the DWP uses all of these to vilify and demonize disabled people.
But why is this down to us? People should be presented with both sides of the story and this isn’t happening. Disabled people are having to find ways to make sure our truths will be heard. Watch this space…
Tuesday 3rd September – ‘I Dare’ day
A day of online action to reinforce that we want ‘Rights not Charity’, and a society where we are able to operate on our own terms as disabled people. Dare to ask for Rights not Charity. Dare to be an activist. Dare to ask more of ‘our’ organisations. We aren’t asking for Care, we want Power: Power to write the script for our own lives, and not to be written out or written off by others. A range of actions and captions will be available for you to capture in an image and circulate online.
Wednesday 4th September – UK FREEDOM DRIVE
A final-day march and events in and around Parliament. Four
themed ‘blocks’ will meet at 4 Government departments, central to the lives of disabled people. After handing over our demands, blocks will then move towards Parliament for a lobby where we will formally launch the UK Disabled People’s Manifesto and present our demands to our
Choose your ‘block’ and meet at 12.45pm at one of:
·Department for Education to oppose government attacks on inclusive education and a return to segregation (Sanctuary Buildings, 20 Great Smith Street, London, SW1P 3BT)
·Department of Energy and Climate Change if you’re angry about the numbers of disabled people living in fuel poverty while the energy companies rake in ever growing profits (3 Whitehall Pl, City of Westminster, SW1A 2AW)
·Department for Transport to challenge inaccessible transport, the opening of new inaccessible stations for Crossrail and proposed cuts to rail staff further reducing customer assistance (Great Minster House, 33 Horseferry Rd, London SW1P 4DR)
·Department of Health to defend our NHS and demand our right to levels of social care support enabling choice, control, dignity and independence (Richmond House, 79 Whitehall, London SW1A 2NS)
Lobby of Parliament: 5 – 6pm – launch of the UK Disabled People’s
WE WANT EVERYBODY TO JOIN US FOR THE FREEDOM DRIVE ideally in person, but also online-this is for everyone everywhere. There will be accessible transport from a variety of towns and cities throughout the country (details to follow) and there is some funding available for transport but we will need your co-operation and patience to make this work for everybody, so please bear with us and note that while DPAC members will be given priority we want to support as many people as we can. If you can’t get there send a photo or your name and you can march with us.
This week of action is yours. Please take part at whatever level suits you – BUT MAKE SURE YOU TAKE PART. Share our events, resources and actions as far and wide as you can.
Let’s Reclaim Our Futures, together!
DPAC web site: www.dpac.uk.net
https://www.facebook.com/pages/DPAC-Disabled-People-Against-Cuts/213545112011414?fref=ts(Open Community group- including allupdates from DPAC)
https://www.facebook.com/groups/DPAC2011/?fref=ts(original open groupDPAC page- faster paced and more opinion driven than community group )
DPAC Twitter: @Dis_PPL_Protest
DPAC email: firstname.lastname@example.org
Remember if you need help with funding to get to London (4th Sept) email us at email@example.com with details. DPAC members will get first priority but we’re hoping to be able to contribute to all that want to come along. If you are unable to come but would like your picture carried send us a photo or message. Please get in touch with any other queries as well and we’ll try to help.
Reclaiming our Futures is supported by The Edge Fund, Andrew Wainwright Reform Trust, Network for Social Change, Black Triangle, Mental Health resistance network, Wow Petition, Fuel Poverty Action, Occupy London, TUC, UK UNCUT, Boycott Workfare, Right to Work, Just Fair, Unite Disabled Workers, BFAAWU, European Network on Independent Living, Anti-Bedroom Tax and Benefits Justice Federation, and more…..
11 March 2013 – On 7 March, the Conference of Presidents agreed to place an oral question on the impact of austerity on the living conditions of disabled peopleon the agenda of the European Parliament.
The question debated and adopted by the Employment and Social Affairs Committee last month, is based on a proposal by the European Network on Independent Living (ENIL) and cooperating European organisations. ENIL welcomes the debate, scheduled to take place in the plenary meeting on 12 March, but notes with regret that the Conference of Presidents missed this opportunity to vote on a Resolution on the same issue. We see this as a clear sign of the lack of understanding by MEPs for the precarious situation of disabled EU citizens brought on by the cuts in public spending.
The European Network on Independent Living (ENIL) launched the Proposal for a Parliament Resolution in September 2009, when a range of cuts to services and benefits for disabled people was first announced in many Member States. Today, disabled people are feeling the effects of these cuts. Their support to live independently, in the community, is being reduced or taken away and the threat of institutionalisation, or re-institutionalisation, is a reality for many.
An increasing number of voices in Europe and internationally, including DPAC, are pointing to the disproportionate effect of the financial crisis on disabled people, and warning about the long-term consequences for the entire society. ENIL and DPAC have been working with a number of European and national organisations over the past 18 months, as well as with some MEPs, in order to ensure an adequate response of the European Parliament and the European Commission to austerity measures imposed by the Member States.
The oral question to the European Commission, which will be debated on Tues 12th March, is an opportunity to get the worsening situation of disabled people in the EU on the political agenda. It is the first step towards a Resolution of the European Parliament, which can ensure that the Member States take concrete steps to reconsider and reverse the measures which are negatively affecting the rights of disabled people. ENIL and DPAC believe that a Parliament Resolution will send a strong signal to the Member States, and will continue campaigning for its adoption in the coming months.
To support ENIL’s Resolution on the effect of cuts in public spending, please write to your MEP today! Together, we can make MEPs from all political groups aware of the impact of austerity measures on the lives of people they are representing and ask them to take immediate action. Thank you for your support!
To follow the debate in the European Parliament on 12 March, please use this link, select ‘Live’ and ‘Current debate’, and then click on the desired language. An estimated starting time will be shown on the website at 16:00 GMT, with the debate likely to take place in the evening.
Text of the oral question
Subject: The impact of austerity on the living conditions of people with disabilities
In the European Union, evidence shows that persons with disabilities, including people with intellectual disabilities, are to a disproportionate degree affected by cuts in public spending and by a resulting loss of support measures – such as personal assistance and direct payments – that are essential if they are to live independently in the community
.1. Austerity policies will lead to an increase in the number of people living in long-term institutional care in many Member States, and to the further social exclusion of persons with disabilities. What steps does the Commission intend to take to remedy and reverse this trend?
2. It is of paramount importance for people with disabilities that austerity measures do not affect primary and daytime care, which, on the contrary, should be expanded further. At the same time, the provision of home care should be enhanced. What concrete steps does the Commission plan to take to encourage the organisation of these community-based services?
3. The EU’s commitments to prevent discrimination when it comes to access to employment and occupation, and to promote the social inclusion of persons with disabilities, are not being met. There is still poor awareness of the enormous potential for improving the integration of disabled people into the labour market, which would also contribute to the employment target set in the framework of EU 2020. What recommendations or good practices can guide the Member States in their efforts to promote the participation of people with disabilities in the society, and in the labour market, and to promote a more sustainable society?
4. Parliament’s resolution of 25 October 2011 on mobility and inclusion of people with disabilities(1) and the European Disability Strategy 2010-2020 stress the need for further action in several areas. What steps does the Commission intend to take to implement the European Disability Strategy 2010-2020 and to ensure that the EU fulfils its obligations under the UN Convention on the Rights of Persons with Disabilities?
 The Conference of Presidents consists of the President of Parliament and the chairmen of the political groups (who may arrange to be represented by a member of their group)
 For more information, please see Hauben, H. et al. (2012) Assessing the impact of European governments’ austerity plans on the rights of people with disabilities – European report. European Foundation Centre. Available at: http://www.enil.eu/wp-content/uploads/2012/12/Austerity-European-Report_FINAL.pdf
 AGE Platform Europe, Autism Europe, European Anti-Poverty Network (EAPN), European Association of Service Providers for Persons with Disabilities (EASPD), European Disability Forum (EDF), Inclusion Europe, European Network of Users and Survivors of Psychiatry, Mental Health Europe (MHE), European Foundation Centre (EFC), Disabled People Against the Cuts (DPAC), UK and Onafhankelijk Leven, Belgium
….a range of false accusations against disabled people and those with long term health conditions are visible in the media. Rather than offering support to disabled people, certain sections of the media prefer to label disabled people as unsustainable, unproductive or immoral members of their communities. The major accusation, however, is that disabled people are not disabled at all, but profiting from fraudulent benefit claims
Eight months on there is a clear escalation of the negative portrayal of disabled people in the UK media. These attacks are no longer confined to screaming newspaper headlines in the Daily Mail and Daily Express declaring that the majority of people on disability benefits are frauds, but a whole host of television programs setting out the Saints and Sinners, even programs with usually good credentials such as Panorama have jumped on to the band wagon of who’s responsible for ‘Broken Britain’. Since March 2011 negative and unbalanced reporting has become worse.
Social and Economic facts versus ideological messages
At the same time unemployment has increased to the highest rates ever recorded for youth and women, and the highest since 1992. On average vacancies have decreased from an average of 2/1 (2005) vacancy rate to a 6/1 (2011) with six people chasing one job according to the Office of National Statistics (ONS). Figures on averages hide local variations which are often much higher.
Yet, still unemployment or any need for state support is consistently identified as a personal failing regardless of personal circumstances or societal limitations: it’s this ideological message, rather than economic and statistical facts that gathers pace and shouts out loud and clear from some sectors of the media, with disabled people most often identified as the group needing to leave welfare and get jobs because they are ‘faking it’.
How the Newspapers are reporting Disability
A recent report commissioned by the organisation Inclusion London and carried out by the Strathclyde Disability Research Group and Glasgow Media Studies group at the University of Glasgow: Bad News for Disabled People: How the Newspapers are reporting Disability, found significant changes in media reporting of disabled people which show a clearly defined increase in stories and views identifying disabled people as ‘undeserving’.
The report identified changes in reporting through comparative content analysis of tabloid newspapers in 2005/6 and 2010/11and through focus groups. The researchers found that incidents of negative language regarding disabled people in print media had more than doubled over the time period, while what they termed ‘sympathetic’ stories had more or less disappeared in the tabloid press. Terms such as ‘burden’, ‘scrounger’, and ‘cheat’ were used repeatedly in 2011with a rapidly decreasing use of articles on disability discrimination. In addition stories outlining the political and economic context were rare. When the focus groups were asked to describe a typical disability story in the newspapers: disability benefit fraud was the top theme.
The media examined were the Mirror, the Sun, the Daily Mail, the Daily Express, and for balance the Guardian. The researchers also carried out a number of focus groups asking what each group thought the level of disability benefit fraud was, there were variations from rates of 50% to 70% of perceived disability fraud from focus groups.
The reality in terms of incapacity benefit it is just 0.03% according to the ONS the report states. The Department of Work and Pensions own figures on Disability Living Allowance are 0.05% both stats also include administrative errors within their figures. The media strategy appears to be working when focus groups state perceived incidents of fraud of up to 70% which is more in line with Daily Mail and Daily Express headlines, than any statistical realities.
The report’s timely commission by Inclusion London, a London wide Deaf and Disabled Peoples’ organisation provides more evidence for further campaigns and for those who doubted that the print media in particular were objective. In addition, there have been several examples of stories usefully backed by a quote or two from Iain Duncan Smith MP welfare and pensions’ secretary. The most stunning in the Sun newspaper in 2011 when he happily implied that disabled people were responsible for the UK deficit, the most recent quoting him as ‘enraged’ and ‘shocked’ based a story that carried false figures regarding mobility cars. He wasn’t shocked by the inaccuracies but by the figures which weren’t checked before publication, but false figures are par for the course, as are false accusations.
The Cuts, Media and ‘real life’ Implications
Sheffield Hallam University have also produced a report outlining the impact of the cuts in incapacity benefit, claiming that almost half of those now receiving incapacity benefits will lose them, not because of fraud, but because of a tightening of the qualifying criteria for the replacement of lower income benefit Employment Support Allowance. The report by the Centre for Regional Economic and Social Research at Sheffield Hallam University, estimates that the reforms will cut the number of disabled people on out-of-work disability benefits by nearly one million in just three years. Add to this other reforms set to take away any support from disabled people and those already carried out removing over 9 billion pounds worth of support and we see a very different story from one of fraud. We see a story of ‘cuts’ to a group that the UK public had consistently agreed to be deserving of support in national surveys such as the British Attitudes Survey.
Professor Fothergill author of the report on Incapacity Benefit changes said
The large numbers that will pushed off incapacity benefits over the next two to three years are entirely the result of changes in the benefit rules” and added that this ..’would impoverish vast numbers of households and cause untold distress to countless more. The incapacity numbers need to be brought down, but this is not the way’
He is also clear that this is not about fraud, but about ‘changes in the benefit rules’ see Jolly . He adds: “Incapacity claimants often face multiple obstacles to working again and their concentration in the weakest local economies and most disadvantaged communities means they usually have little chance of finding work.”
Yet, it is the benefit fraud stories that abound despite the 0.03% figure; people believe the figure is much higher. A rise in disability hate crime has been linked to the media strategy on the demonising of disabled people. One example was reported on 4th December, one day after the International Day of People with Disabilities. It tells of Peter Greener’s constant barrage of abuse from his neighbour.
Sometimes, it was eggs thrown at his house, stones thrown at his windows or paint thrown at his fence; more often, it was words hurled in his face: spastic, cripple, scum, scrounger. These assaults went on for months, leaving the former Nissan car-sprayer in floods of tears, feeling suicidal and on antidepressants. He was scared to leave his home in Hebburn in South Tyneside and blamed himself for the upset it caused his wife and two children. “It made our lives hell,” he said.
Like many people with conditions such as multiple sclerosis, Greener’s regressive condition fluctuates. One day, it affects his memory, the next his speech. Sometimes, he uses a wheelchair; at other times, he can haul himself around on crutches. But this only led to more abuse, with angry shouts he was faking his disabilities and exaggerating his problems to get benefits
This is just one story; but the climate of fear is clearly working, there are disabled people who are frightened to leave their homes because of verbal and physical abuse, and accusations of being scroungers and frauds. There are those who refuse to claim their entitlement to support in spite of previously paying years of national insurance when they were in work, because they do not want to be labelled as benefit cheats. In total 16 million pounds worth of entitlements goes unclaimed. There are also those denied entitlement to support through the tougher regimes for claiming any benefit such as the replacement for incapacity benefit through the work capability assessment, carried out by the private company Atos who are being paid 100 million pounds per year by the government. The sums do not add up, but the strategy seems to:
A further report carried out by BT showed that a third of those questioned demonstrated increasingly negative attitudes towards disabled people. Reasons cited for this ranged from disabled people being seen as a burden on society (38%), ill feeling around the perceived extra support given to disabled people (28%), and the personal worries and sensitivities which rise to the fore during a recession (79%).
European Media Strategies
The media attacks on disabled people are not just happening in the UK. In Holland up to 90% is being cut from support for disabled people, similar media demonization is taking place in the popular press identifying perceived ‘undeserving’ cases. In Sweden cuts are being made to assistance to support disabled people with tougher qualifying criteria being put in place, they too have a focus on those who defraud the system highlighting such stories while record numbers of people loose entitlement to support.
The figures for fraud are just 0.05% in Holland. Yet, the magazine Vrij Nederland, a major quality magazine in Holland reproduces outrageous comments from the Secretary of State, responsible for the drastic 90% cuts:
The State Secretary of Health, Marlies van Zanten Veldhuijzen finds it unacceptable that some thirty percent of people with a personal budget (PGB) wrongly receive it. She said in an interview this week: “It can have you on the internet looking for the name of a disease, and then think: look, I can get 2000 Euros per month. With PGB we need to sort the wheat from the chaff.
She states that 30% receive a budget without having the right to receive it, as if it is a fact. Yet, here is no existing evidence or research confirming or even indicating this. Before receiving a PGB, as in most countries, a strict assessment is carried out. However, here we have a government minister saying that individuals can simply choose a disease at random by searching the internet to gain these funds.
Stories used by media to usher in cuts to disability support appear to converge into strategies by particular populist media to create a media panic around the extra perceived support given to disabled people for the extra costs of disability. This is proving effective , especially when there are examples of ‘undeserving’ cases being presented to shift the traditional view of disabled people as ‘tragic victims of circumstance’ –the claim of ‘tragic victims’ has always been rejected by many in the disabled peoples’ movement –maybe this will change as the 21st century welfare reform policies and the media strategies in the UK and Europe reinvent millions of disabled people as the tragic victims of the circumstance of recession and easy targets for savings from the state budget.
The political use of media to promote demonization of disabled people is aiding the work of governments’ intent on cutting the support and the human rights of disabled people. There are rising cases of verbal abuse against disabled people such as that endured by Peter Greener and rising cases of suicide amongst disabled people with one couple entering a suicide pact after surviving for a year by walking 10 miles to receive food parcels which they made last all week.
Ann McGuire Westminster Shadow minister for work and pensions wrote recently:
Disabled people say they are fed up with being labelled as scroungers in the media – and are beginning to point the finger in the direction of the Government. Yesterday at Work and Pensions questions I asked the Minister for Disabled People to assure the House, and disabled people up and down the country, that Ministers are not behind the stories knocking disabled people that seem to be emerging with alarming regularity…
McGuire called on the minister for disabled people to quell the insidious media attacks, a challenge that was also made directly to Miller at a recent disability conference in London: McGuire said:
The Minister for Disabled People has a responsibility as the champion of disabled people inside government to challenge some of the more outrageous and outlandish comments by some of her senior colleagues and others associated with her government…And I call on her to do so.
UN Convention on the Rights of Persons with Disabilities
Article 8(2c) of the Convention on the Rights of Persons with Disabilities states:
‘Encouraging all organs of the media to portray persons with disabilities in a manner consistent with the purpose of the present Convention’.
This would include any change in reporting over time: it seems that there has been a change in reporting which is clearly not in line with the convention’s principles of promoting, protecting and ensuring the full and equal enjoyment of all human rights and fundamental freedoms nor with promoting respect for disabled peoples’ inherent dignity. In fact the opposite seems to be occurring.
Inclusion London, the pan Deaf and Disabled Peoples’ organisation that commissioned the Glasgow University research into the media have led a response on the Leveson Inquiry. The response: titled ‘Open Season on Disabled People?’ supported by Disabled People against Cuts and others states:
The Government must issue a clear and public rebuttal every time the media release inaccurate information citing Government / Department of Work and Pensions (DWP) statistics.
That the Government commit to full transparency in their dealings with the press including keeping a publically available record of all communications between Government officials, Ministers, their aides and special advisors and the media.
That there needs to be an independent review of how the Department of Work and Pensions (DWP) releases and provides commentary on its statistics to assess how fair and balanced this data is presented and communicated.
That the Equality and Human Rights Commission (EHRC) must carry out further research on the impact of media coverage on disabled people and the implications this has for disability hate crime, disabled people’s protection under The Equalities Act and the UN Convention on the rights of disabled people.
We call on the Leveson inquiry, Press Complaints Commission, and OFCOM to:
Carry out an independent investigation into the media reporting of disabled people. This investigation needs to include the impact this coverage is having on disabled people and the implications this biased and inaccurate reporting has for the culture, practices, ethics and standards of the press. It must also examine the opportunities disabled people should have for effective redress.
Acknowledgements: I would like to acknowledge the assistance and kind support of Jamie Bolling Executive Director of the European Network for Independent Living (ENIL) and Peter Lambreghts of ENIL and the Expertise Centre Independent Living