The Chronic Illness Inclusion Project is a new research project aiming to capture the views, needs and aspirations of people with chronic illness. Sign up to get involved. In the longer term our ambition is to grow into a user-led organisation.
A new project aims to give a voice to people with chronic illnesses that get overlooked and misunderstood by the systems that should be supporting us.
“As a sufferer of chronic ill health, I fully support the Chronic Illness Inclusion Project. People with chronic ill health are forgotten by governments when designing policies and never mentioned. We are often hidden by the umbrella term of ‘disabled’. The impacts of chronic ill health are wide ranging, from severe fatigue and cognitive problems, to days spent in lots of pain. The effects have a huge impact on the day to day functioning of a person. Many spend long hours unable to sleep or sleeping for long hours out of sheer exhaustion. You really cannot grasp those impacts unless you are affected by chronic illness. It’s not just the physical issues, you have to store that energy up to even have a shower or even go out for the day and plan well in advance, only to spend the next few days paying the price for small bit of enjoyment. It is time our voices were heard too, instead of our voices being alone in the wilderness. It can be very isolating. I urge people to join and support this campaign.”
We are inviting people to sign up to our mailing list where we can keep you up to date with activities and opportunities to get involved. Currently we’re planning an online discussion forum for people who are interested in having in-depth discussions about the social and political aspects of living with chronic illness. But in the longer term our ambition is to grow into a user-led organisation. How this happens could be up to you!
It will take time because we are two people with chronic illness working very part time hours. But this is a lottery-funded project where numbers count so by joining us you can help to show what a large and overlooked group we are.
We need your stories about disabled children and young people’s experience of attending residential special schools and colleges. We are responding to The Lenehan review of experiences and outcomes in residential special schools and colleges.
Posted by: Alliance for Inclusive Education in DDPO news on 16 February 2017
Responding to The Lenehan review of experiences and outcomes in residential special schools and colleges
We need your stories about disabled children and young people’s experience of attending residential special schools and colleges.
We are also interested in hearing from disabled children and young people and parents who have been pressurised by their local authority (or resisted the pressure) to consider a residential special school or college placement.
Does your local authority have a residential school or college placement policy that we should know about?
Please contact us if you can help us – we need your response by Deadline 1st March 2017. For further information please see our briefing.
Please contact me if you would like more information.
I’m Martyn and I sit on the NUS (National Union of Students) Disabled Students Committee.
This Wednesday (26th October) from 1pm, we will be launching a new campaign where we will be fighting the high prescription costs that the NHS has been charging over the last few years. While this area of work will mainly be focusing on students, we will also be looking at the impact that these prescription costs have on the general public as well as fighting the charges to either have them scrapped or heavily reduced.
The current cost of an NHS prescription is £8.40; and in the last five years alone medication costs have increased over £1. When you are on no or a limited income, this is a charge that is not needed and can result in an even greater financial pressure for us to just maintain a basic level of health. Furthermore it is bad enough when you have to pay this once, but when you have to pay this every month for several items the cost soon mounts up. Add on other costs such as optical and dental charges and this annual total can be too much for people on a decent income to afford, let alone disabled people.
Even though there are some financial options for saving money such as pre-payment certificates, this is still not enough. Similarly a few of us are lucky to be exempt from these charges for a variety of reasons, however the majority of us don’t qualify for this. With the increasing cuts that the government are placing on us, this is becoming even harder to get.
As such, we are launching and running the cut prescription costs campaign and it will be great if as many of you can support us as much as you can. From 1pm this Wednesday, it would be amazing if you could take to social media using the hashtag #freeprescriptions to both promote the campaign and share your experiences of prescription costs and having an impairment. There will also be further information coming shortly on the different things that we will be doing and working on in order to fight the prescription charges and have them cut. This will also be an indirect fight at the cuts that the government have been imposing on people like us who are disabled. Again, it will be great if you could support us and get involved with it. The more people there are, the stronger we can be and the more likely it is that we will win.
Furthermore, on November 19th, NUS and UCU will be marching through London against many different issues that we are facing. Disabled people’s issues such as these will be at the forefront of the demo. For further information, see NUS National Demo on Facebook or Google search it.
If anyone has any questions, wants more information or wants to be kept in the loop with what we are doing, feel free to drop me an email at: M.Brown18@uni.brighton.ac.uk
For those who were able to come to our conference on September 10th I’m sure you all remember the absolutely harrowing video from Greece which was shown of disabled children being bound into cots and beds. For anyone who missed it you can see it again here
In a solidarity action with our OCAP allies in Toronto we plan to deliver a letter to the Greek Embassy in the UK. (below) demanding changes in Greece and human rights for disabled people there.
Meet Wednesday, October 5th at 10.30am outside the embassy at 1A Holland Park, London, W11 3TP
For those of you not able to attend in person please join in on twitter #GreeceSolidarity and tweet to @GreeceinUK or email email@example.com using the below as a template.
Dear Mr. : This letter is being hand delivered by a delegation from Disabled People Against Cuts. We are here in solidarity with the Emancipation Movement of People with Disabilities: Zero Tolerance in Greece. In November of last year, they occupied a centre for disabled children and young adults in the town of Lechaina and exposed conditions of neglect and cruelty that clearly constituted an abuse of their human rights. This went to lengths of prolonged confinement in tiny spaces and the tying down of children to their beds round the clock. You may be aware that Human Rights Watch has taken up this matter and spoken in the clearest terms on the enormity of the abuses involved. You may also be aware that the horrors being perpetrated at the Lechaina centre are simply the tip of the iceberg. It is estimated that eighty five such centres are operating throughout Greece and that a huge and appalling abuse of the rights of disabled people is being perpetrated. Your Country is, of course, facing an externally imposed agenda of the most brutal austerity. Regrettably, your Government has decided to accept the logic of this agenda and embrace the infamous notion that ‘there is no alternative.’ With regard to the disgusting treatment of these disabled children, we wish to convey to Mr. Tsipras and his colleagues that an alternative must be found and the obscene warehousing of human beings that has been exposed here must come to an end. DPAC wishes to join with the Emancipation Movement of People with Disabilities: Zero Tolerance, Ontario Coalition Against Poverty and with many others internationally in demanding decent, adequate and humane conditions and services for these children and all disabled people in Greece. Thank you for your attention to this matter and we await your response. Yours truly, Ellen Clifford on behalf of the DPAC steering group
Different forms of Government Propaganda began and ended the year. We saw delays, backlogs, more cuts, more campaigns and direct actions. We reproduce some of the DPAC actions, research and call outs from 2014. Highlights included the Westminster Abbey Occupation against the closure of ILF as part of the #saveilf campaign, lowlights included the court case that arrived at the decision that Penning had taken appropriate process into account by saying that ILF users could be entitled to less under local authorities. Chaos with the DWP, PIP, ESA was compounded by misinformation, dodgy stats , backlogs and increasing sanctions. The brilliant Hammersmith and Fulham Coalition against Cuts achieved the abolition of ‘care’ charges by their local authority-proving it can be done. Esther McVey was awarded Scrooge of the year. DPAC was threatened with legal action for our support of the Anthony Kletzander campaign -in response we increased the campaign, and the relationship in the propaganda against disabled people between the DWP and the Mail was finally exposed
News that the UNCRPD Committee had initiated its first ever inquiry into grave and systematic violations of the UN Convention against the UK identified how far our disability rights and independent living had been eroded by the Coalition-although the Mail didnt seem to like it much
Our constant court cases against the DWP continued, and we have more lined up for this year too- yes, we could be talking to you Motability!
Here’s to a better year in 2015 with thanks to all our members and supporters. Keep up with news in 2015 by subscribing to posts through our website www.dpac.uk.net or follow us on twitter @Dis_ppl_protest
Some selected actions of DPAC in 2014
January saw the posting of a call for those who were waiting for PIP due to backlogs. This post has received over 40,000 views,shares and many comments. The situation has now been described as a backlog that , at the current rate , could take 42 years to clear. For those claiming ‘reforms’ are working have a look to see that they are not: https://dpac.uk.net/2014/01/have-you-waited-months-for-a-pip-assessment/ and let’s not forget the backlog in ESA either-in short complete chaos for disabled people.
In ‘Austerity Street: the real impacts’ we reproduced some of the stories we had received from those left without cash and homes via sanctions, delays and backlogs. This was in response to Love Production’s poverty porn , Benefits Street, part of the media’s continued demonization regime -the campaign incorporated a twitter fest against the format of biased programming. We supported our partners in Canada Sudbury Coalition Against Poverty (SCAP)and Ontario Coalition Aginst Poverty (OCAP). In an international campaign against increasing homelessness. Austerity is global. We supported Boycott workfare against CAPITA cashing in on poverty.
DPAC joins protests against DWP and ATOS country wide. Protests that were reminiscent of the very first DPAC protests against Atos carried out by DPAC from 2011 onwards, culminating in the 2012 DPAC Atos games that saw Atos tarnished forever. DPAC leads direct actions and online protests against the despised disability Con-fident, leading to the highest number of tweets and retweets ever, exposing the scheme as no more than a Government gloss while they were cutting access to work and removing the means for disabled people to work. We produce a critical analysis of Pennings impact assessment regarding ILF. We reproduce the piece by John Pring asking ‘Where was your MP during the Wow Debate’
At the end of June DPAC with UKUNCUT, and Occupy carry out a daring occupation of Westminster Abbey , after months of planning to highlight the #saveilf campaign. There were 3 police to every protester , and while we had no support from the dear old church , messages of support and publicity poured in
In Secrets and Lies :maximus the new leader of the inhumans we ask why Disability Rights UK have agreed to a) be part of the Maximus testing process on the WCA and b) why they’ve teamed up with Unum and other insurance companies to develop a TV program showing how much better off disabled people will be if they take out private insurance- with user-led disability organisations like these we dont need enemies.
New regulationshave very recently been laid before Parliament which will cut Disabled Students Allowance. At DPAC we are concerned that these cuts will seriously reduce or even prevent disabled students from taking part in higher education. We are concerned that the Regulations were laid without a public consultation and in breach of the public sector equality duty. If you are worried about the cuts to Disabled Students Allowance because you are (or will be) a university student who would apply for DSA, please get in touch with us at firstname.lastname@example.org
DPAC fully support disabled students taking part in this march even if the NUS disgracefully say they no longer support it. We’d like to ask all disabled people who can to join with disabled students fighting for inclusion and rights to come along and join the march. Access information will be available shortly on the facebook page and we will add it to the website as soon as we have it.https://www.facebook.com/events/775841715811858/permalink/775879035808126/
On 19 November, school, college and university students from across the country will be marching in London under the banner “Free Education: No fees. No cuts. No debt.” Disabled students will be there! It’s time to put this issue onto the political agenda and to fight for a public, democratic education system that serves the vast majority in society and is free and accessible to everyone.
Disabled student will be meeting at the front of the march, outside Senate house. For more information on accessibility and anything else please email email@example.com
Free education is not just about abolishing fees, disabled students demand:
-Full living grants for all, and abolish tuition fees
-Full financial support for all access needs, save DSA but even more. We need to cancel DSA cuts, not just delay them.
-Decently funded support services on campuses for disabled students and university psychological services
-Defend the NHS from privatisation and fund it properly, improve mental health care resources
-Smash high rents, provide good quality accessible student housing. Ensuring Universities invest in accessible accommodation.
-Fund institutions to upgrade for full accessibility
To achieve these, we need a democratic, public education system controlled by communities, students and workers, and we need to fund it using the resources of those who can afford it – by taxing the rich, and by putting the wealth of the banks that we bailed out under democratic control.
****Invite your friends and colleagues!****
The demonstration is being organised by the National Campaign Against Fees & Cuts (http://anticuts.com/), the Student Assembly Against Austerity, and the Young Greens.
******More information on access on the demonstration coming soon********
Below are ALLFIE’s (Alliance for Inclusive Education) crucial principles for inclusive education. We all agree that education is a fundamental part of life, as such these principles are crucial for disabled children and adults and for their right to be educated in an inclusive enviroment.
DPAC fully supports ALLFIE’s principles and calls for ‘Education not segregation’ for all Deaf and disabled learners.
The principles are:
Diversity enriches and strengthens all communities;
· All learner’s different learning styles and achievements are equally valued, respected and celebrated by society;
· All learners to be enabled to fulfil their potential by taking into account individual requirements and needs;
· Support to be guaranteed and fully resourced across the whole learning experience;
· All learners need friendship and support from people of their own age.
· All children and young people to be educated together as equals in their local communities;
· Inclusive Education is incompatible with segregated provision both within and outside mainstream education;
DPAC have had an odd kind of non-relationship with DRUK. We’ve disagreed about many things. For example, DPAC is for saving ILF, DRUK’s Sue Bott suggests this is something we should probably forget about, and that ‘Whilst the ILF has benefited many disabled people, claims that it has been at the forefront of independent living are a little exaggerated’. This is not the view of ILF users. See their stories, their lives, their experiences It is amazing that anyone can believe that passing ILF to local authorities who already say that without ring-fenced funding many ILF users will lose support and/or be institutionalised is something we need to accept while we all get together to talk about ‘new visions’.
The DRUK conference dedicated to a ‘new vision’ for independent living is also a confusing affair, not only are they embracing Simon Steven’s approach ( He who accused DPAC of murdering disabled people and was dropped from Leonard Cheshire’s sponsor program because of his outright abuse to other disabled people), but one of their advertised partners for this conference are Craegmoor .
Craegmoor are part of the Priory Group owned by Avent International which is a US Equity Company- changing times you may say-and you’re right. Maybe that’s what these new visions are about: capitalising on the market, private equity companies taking public money, and disability organisations getting in on the act- maybe neo-liberalism rather than disabled peoples’ rights and equality now make up ‘new visions’ of independent living
Craegmoor ‘s target market are those labelled with autism, learning difficulties and mental health issues. They take 85% of their funds from public funds. Craegmoor’s web site boasts of its residential homes:
We provide understanding and support for people with learning disabilities, autism and mental health problems in a variety of settings based on the individual’s abilities and needs. Our nationwide residential care services support people to develop the skills they need to live as independently as possible’.
Wait, since when were residential homes part of independent living? Weren’t these the very oppressions that early activists fought to get out of, and current activists (and ILF users) are fighting to stay out of?
Their brochure goes further:
Craegmoor is part of the Priory Group of Companies. From education to hospitals, care homes and secure facilities, the Priory Group of Companies offers individually tailored, multidisciplinary treatment programmes for those with complex educational needs or requiring acute, long-term and respite mental healthcare’.
Treatment programs? Not sounding very independent living or social model. As well as residential homes, secure ‘hospitals’ and segregated schools. It all sounds very daunting.
But there’s much more on the Priory group of companies too which is even less palatable concerning cover-ups and abuse. Until July 2013 Phillip Scott was Chief Executive if the name isnt familiar, he was also the Chief Executive for Southern Cross. Itself a subject of inquiry on institutional abuse and 19 unexplained deaths Craegmor say they transform lives, but in what way?
In May 2013 there was Melling Acres, ‘where inspectors reported major concerns about the care and welfare of its seven residents – care plans were poor, with scant information about physical health needs, there were limited activities and a lack of advocacy to enable people to express concerns about their care’. In September 2012 ‘following an anonymous tip, inspectors found residents at risk of abuse in Lammas Lodge, a home for young adults. There were not enough staff and what staff there were, inspectors found, were not properly trained to meet residents’ complex needs. There were six major areas of concern, including care and welfare, medication and safeguarding. The home, which was warned it must improve or face closure, has since been given a clean bill of health by the regulators’. Both homes were registered under Parkcare Homes’ so neither Priory or Craegmoor got the fall-out despite ownership.
This was not the case in 2012 when concerned relatives hid CCTV cameras in the room of Highbank hospital in Bury Manchester to reveal abuse by staff, not so with the Bentley Court home in Wolverhampton suspended by the council for what it called ‘safeguarding issues’ in 2010, a council that stopped sending those with dementia to Bentley Court, and not so in 2012 when what was described as the ‘Priory mental hospital’ in Windes on Bennet Lane was closed due to not meeting 10 standards of Government quality and safety including: Patients not being fully protected from the risk of abuse and their privacy, dignity and independence not being respected, staff not receiving necessary training, a lack of systems to assess and monitor the quality of the service provided, care plans did not always cover patients’ needs. There were also reports of patients attempting to escape during supervised visits into Widnes town centre.
So as said definitely NOT independent living.
In 2004 the then CEO of the Priory group Chai Patel said ‘My view is, if there is ever a conflict that involves choosing between care and profit, then we should not be involved in that environment,’ Given the examples above it seems profit is the defining factor.
It didn’t take long to find this information, it didn’t take long to realise that these are not the partners who should be with any organisation claiming to support independent living, even ‘new visions’. So maybe the question that needs to be asked is what exactly do DRUK support?
There are a few clues, in a recent blog piece by DRUK (dated 16th July) mentioning a very good Guardian piece by independent living activist John Evans, an ILF user, the last paragraph says: ‘Sue Bott, Director of Policy and Development at Disability Rights UK, has written a new blog which also discusses the role of the ILF but proposes that disabled people should concentrate their campaigning towards achieving a single integrated system that assesses people’s needs and allocates assistance and support based on the outcomes people could achieve in their communities and contribute to society’.
John Evans says everything we need to know-we have a vision for independent living and we already have a model forged by international independent living activists. There is nothing wrong with that model. There is no reason to stop fighting for it, abandon it or develop ‘visions’ or hallucinations of lesser systems in which we divide disabled people by perceived contributions to society-all disabled people are of value, all deserve to be supported. It is the ILF model that needs to be built upon and expanded to all-something that promotes real independent living.
The fact that a so-called user led organisation is putting forward anything different with the spectra of institutionalisation added to the mix is a tragic condemnation of all that disability activists have ever worked and fought for. We are appalled that DRUK are willing to sacrifice disabled people’s futures in this way and sadly can only assume this is to ensure on-going funding from the government.
ALLFIE (the Alliance for Inclusive Education) would like to put together some short and snappy videos on disabled peoples experiences of having Disabled Students Allowance and the impact it has had in helping them benefit from higher education on our lovely website –
In particular we would like to focus on inclusion and participation whilst recognising that for some disabled students having the DSA means the potential of getting higher grades or getting a qualification whilst studying at university. Also it be great to hear how DSA has supported disabled students who benefited from higher education even if they have not ‘passed’ their course.
We would like to interview disabled people (young and old!) who are thinking twice about going to university as a result of Government’s DSA reforms.
If anyone wants to know more about the DSA reforms please follow the link – http://www.allfie.org.uk/ Please scroll down to ALLIFE’s june briefing.
If you are going to be around for the ILF tea party on Friday – please let me know as I will have a small video camera to do the interview with. I will be wearing an ALLFIE teashirt. If you want to have a chat please ring me on 0207 737 6030 during Tuesday and Thursday.
The ILF has transformed People’s lives. The Independent Living Fund does what it says on the tin – it liberates people who wouldn’t otherwise be able to, to live independently. It lets them make choices about how they live – things we often take for granted: when to get up or go to bed, what and when to eat. It allows them to work, to be active in the community and to live in their own homes.
I challenge the Minister today to guarantee that those currently in receipt of ILF won’t become less independent as a result of his decision to close it in June 2015. Because that’s what people fear. That’s what they are frightened of. They fear losing their jobs, losing those staff they employ to support them and losing their independence. They fear being forced out of their homes and into institutions.
The Minister may say he’s passing the monies and responsibility to Local Authorities but this will not ease their fear. And he is rather naïve if he thinks that absolves him from his responsibilities for this decision. I’m afraid he can’t get away with devolving responsibility and blame for the consequences of his decision to others. That’s why I ask him for these guarantees today. For a start Disabled People Against Cuts calculate the current annual cost of support at around £288 million yet the government only identified £262 million to transfer to local authorities. And it gives no reassurances that this money will be ring fenced to be spent only on supporting disabled people to live independently rather than absorbed into broader council budgets.
According to SCOPE £2.68 billion has been cut from adult social care budgets in the last 3 years alone, equating to 20 per cent of net spending. This is happening at a time when the numbers of working-age disabled people needing care is projected to rise by 9.2% from 2010 to 2020. In a recent survey 40% of disabled people reported that social care services already fail to meet their basic needs like washing, dressing or getting out of the house. And 47% of respondents said that the services they receive do not enable them to take part in community life.
So it’s not surprising that people are desperately worried about their future.
The worry is that continued underfunding of social care will mean the care system will simply not be able to support disabled people to live independently. The lack of reference to ‘independent living’ under the definition of the ‘well-being principle’ in the Care Bill which local authorities will need to take into account when providing care further fuels this anxiety.
And it’s not just people in receipt of ILF who are worried – it’s their friends, their carers and their families too. The cases of two of my constituents illustrate this well.
Ashley Harrison is a Scunthorpe United fan like me cheering on the Iron at Glanford Park. At 10 months old he was diagnosed with cerebral palsy. He will turn 30 this year. Ashley has lived in his own bungalow since 2006. The ILF allows him to employ his own team of carers. Ashley is an inspirational man, a fighter but he is worried that the control over his future is being taken away from him.
His mother says:
‘The closure of the ILF would be nothing less than devastating for us as a family. Since Ashley was awarded his ILF allowance the whole family’s lives have changed for the better. ILF understands Ashley’s needs and always do everything they can to constantly improve Ashley’s life and enable him to live independently.
As a family naturally all we have ever wanted is the best for Ashley, which the ILF has helped us achieve. The ILF has always seemed to be the leading and positive force at meetings ensuring that social services match and meet Ashley’s needs. Without the ILF we all face a very uncertain future. The uncertainty that Ashley faced in his early years prior to receiving his ILF award have been daunting, frustrating and of course a constant battle with social services.
The alleged “smooth transfer” over to social services is already proving to be nothing of the sort. Each and every meeting we hold (which are incredibly frequent) leave us having to justify Ashley’s needs as a disabled person. The assessments they ask us to complete are totally unsuitable for the severely disabled.
All of the disabled people living independently with the help of ILF are living their lives to the full. The fear is that if ILF closes these people will lose their human rights and dignity to live their lives as they should.
As a mother who’s fought the last 30 years for Ashley to have the life he wants and of course deserves, I dread to think what the next generation of disabled people will have to endure without the positive support of the ILF.
I beg you to listen to myself as a mother of a disabled son and also listen to all those disabled voices who deserve to be heard.
Give each and every person the ability to live and achieve their dreams just as you and I can.
The Paralympics just proves how amazing disabled people can be!!!’
Jon Clayton is also in receipt of ILF. Like Ashley he has carers whom he employs who understand his disability. His sister writes
‘My brother Jon is quadriplegic having been involved in an accident which was not his fault at the age of 18. He is now 54.
He is one of life’s truly inspirational people; an accomplished mouth artist – a gift he only knew he had after his life changing accident- living independently in his own home. He freely gives his time mentoring other disabled persons, helping them come to terms with another life. A life without limbs. A life without walking.
He has always sought to live as normal a life as possible. Having gone through marriage, divorce, being a step father, losing a partner.
He is both ordinary and extraordinary.
He relies heavily on his full time carers. Carers who he personally has ensured are trained to an appropriate and exceptional level to look after a person with specific and defined needs. One false move and he could (and has) spent 18 months bed bound with a pressure sore at the expense of some ill trained nurse.
His carers are trusted to ensure and give a high level of care, entrusted with the most personal of tasks from catheter changing, toileting, dressing etc. This has been part of Jon’s life since his accident. Something he has taken on with humour and dignity.
If the ILF is removed Jon will be unable to live independently. Being able to engage in what you and I would consider a normal life. He will be unable to travel, have holidays, visit family, visit friends.
The ILF has enabled independence. Given life, where life seemed over.
I would therefore urge you to do all you can to prevent this life enabling function – the ILF – from being eroded’
A fundamental concern for Jon, Ashley and others is whether they will be able to employ their specialist staff in the future. North Lincolnshire Council’s responded to this question on 9th June 2014:
‘We appreciate this situation may cause you concern as an existing Independent Living Fund customer and would wish to reduce any worry or anxiety you may have.
Allocation of future monies will be based on your updated assessment and support plan and on future Local Authority funding so at this stage we cannot give any specific guidance on the amount of monies that you may receive from us or cannot give guarantees on the future employment status of any Personal Assistants you may currently employ.’
As you can imagine such ‘reassurance’ only serves to heighten anxieties and build mistrust!
So I return to my central question – will the government guarantee that Ashley Jon and all those currently in receipt of ILF will not lose their independence as a result of their decision to close it. A decision I believe is aimed at saving money but might end up costing more in other budget areas such as health. A better way forward would be for government to engage with ILF recipients learn from their experience and find ways of shaping future services that are cost effective but continue to deliver true independence.
As Disabled People Against Cuts points out for the 17,500 people in receipt of ILF ‘the closure of the Fund will have a devastating impact on the lives on these individuals and their families. It also has a much wider significance because at the heart of this is the fundamental question of disabled people’s place in society: do we want a society that keeps its disabled citizens out of sight, prisoners in their own homes or locked away in institutions, surviving not living or do we want a society that enables disabled people to participate, contribute and enjoy the opportunities, choice and control that non-disabled people take for granted?’
Or in Mahatma Ghandi’s words “A nation’s greatness is measured by how it treats its weakest members.”
People like Jon and Ashley are not weak but strong. The ILF gives them independence and liberates their strengths. Now is the opportunity for the Minister to guarantee their future independence will not be compromised by the closure of the ILF.
“An Inclusive Education and a Fulfilling Life” Conference Saturday 7th June 2014 10am until 3.30pm
Accessible Venue Kahawa Café 163 New Union Street
Coventry CV1 2PL
Purpose: This conference sets out to bring together disabled people, the parents of disabled children and those with SEN, and their non-disabled allies to explore common ground, opportunities and choice with regard to independent living and enjoying an education alongside their peers.
The conference will:
• Be respectful and accessible
• Be informative and participatory
• Use cooperative learning approaches
• Give examples of where things are working
• Discuss why life is getting harder for disabled people.
Refreshments: Lunch provided
The charge will be: £2.00 disabled people and family members
£4.00 for allies (professionals etc)
This in a not-for-profit event; all proceeds are to cover the cost of the conference. Please pay on the day but we do need a definite commitment that you are coming so we can make arrangements.
Interested in attending or want more information?
Please book a place: Email: firstname.lastname@example.org
Organisers: Elaine Hill, Rob Punton, Keith Venables, Caroline & Maresa MacKeith
Advisors: Katie Clarke, Steve Cooper & Tara Flood
Text or call: 0780 587 8729
For more information about ALLFIE: http://www.allfie.org.uk
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.
DPAC would like to thank everyone for making last week’s (April 12 2014) National Conference such a huge success. There was a huge turnout with over 150 disabled activists from all over the UK including many new DPAC members attending, but just as important there were hundreds of members and supporters beyond the venue taking part through social media – watching the video live-stream, tweeting and sharing comments, views and sending messages of support. This was fantastic work by everyone and a truly inspiring collective effort.
Here’s a brief outline of how it went.
The day was timetabled into sections beginning with practical reports and voting on policy motions. This was followed by two workshop sessions and then a closing session for everyone to feedback on the day. Four workshops were available to choose from in each Workshop session. Detailed reports on these will follow later.
John McDonnell MP, a longstanding friend and supporter of DPAC, gave a rousing opening speech to encourage everyone and remind us of the victories achieved so far. He congratulated disabled people and DPAC for fighting back, along with our sister organisation Black Triangle and WoW Petition initiators
As he finished he mentioned his own recent health condition which he said he felt brought him closer to our movement. Ellen reacted quickly by giving him a DPAC t-shirt and declaring him a full DPAC member to instant applause and cheers.
The Finance Report showed a healthy state of affairs for the time being thanks to individual donations, t-shirt and badge sales plus grants from the Edge Fund, the Network for Social Change, Trust for London and the Andrew Wainwright Trust. More fund-raising is necessary going forward.
1. Government Honours
This proposed that any future candidates for the DPAC Steering Group could thwart the network and collective ethos of DPAC if they had received a national honour like an OBE or MBE. The ‘BE’ refers to the imperialist British Empire which is still celebrated despite what we know of the suffering and oppression this caused. The motion conversations also suggested that any media attention would be focused on those with honours and titles, rather than on the collective network ethos that DPAC ascribes to. The motion was put forward as a rejecting of this possibility and that of the honours system more generally. This was defeated.
This motion stated DPAC opposition to discrimination on the grounds of gender, sexuality, age, faith, disability, ethnicity or status. It also empowered the Steering Group to terminate the membership of anyone who supported a party which holds discriminatory policies, like UKIP. This motion passed based on an appeals process being put in place
3. Steering Group Size
This motion sought to expand the Steering Group from 8 members to 12 in order to respond to increased activity and maintain a broad, diverse and inclusive profile. This was passed.
There were 11 nominees for the Steering Group. Conference took a vote on whether to vote for accepting all 11 nominees, or vote for them one by one. Conference voted to accept all 11 nominees. The new steering group are currently reviewing co-opted places and will get back to the additional people that applied past the deadline as soon as possible
It was highlighted that the working groups are important in taking DPAC forward. The co-chair said she hoped those who did not stand for the Steering Group but were still interested in getting involved would join these as soon as possible.
Finally, a big thank you to the Conference Organising group and Workshop leaders who worked so hard to make this wonderful event a reality.
Links to videos from the day are here with thanks to Occupy for live streaming on the day to make the conference inclusive to all are here
Links to pictures can be found on DPAC flicker here
Thanks to Pete Riches, Szucs Gabriella and Rob Peters
The powerpoint on highlights of the last year can be found DPAC Report
A link to 2013 and some of the things DPAC did is here
See you on the streets!
Also find us on Facebook with a group and open page under ‘Disabled People against Cuts’
“You have to love your own baby becos everone says they are a nusance”
Sally age 8
I have come to recognise another truism! – If you are a parent of a disabled child. The school will give whatever support, you believe, is necessary for your child – as long as it matches with what the school is prepared to offer.If you want something different ,You! “The parent” who is typically the mother, become “A problem” . The more articulate you are the more you are seen as “bloody awkward”.Colourful labelsgrow, the more you persist : “too pushy”, “in denial”, “neurotic”, “deranged”,”obsessed”, “too emotional”, “irrational” “naive” are a few of the polite names given to parents.
The rhetoric from schools and education authorities promoting partnership, between parents and professionals is common. This laudable aim, if realised,could save a great deal of pain and heartache for all concerned. The ultimate goal for most parents is for their child to feel safe welcomed and a belonging to the school. This is “gold dust” one parent said. Initially parents will “bend over backwards” to keep on the “good side of school” they are motivated by the desire to make this goal a reality for their child to experience. However, because there currently exists an unequal distribution of power and authority between parents and professionals the potential for “partnership” is only likely to happen when parents conforms to the plans of professionals.
After twenty five years being with parents advocating for their disabled child, I have not met a parent who had wanted conflict with the school. It is however, the professional who has the responsibility to change what they are doing to ensure the child can feel safe welcome and belongs to the school.A consequence of seeing the parent as a problem is that it is a distraction from supporting the child. There is a shift to devaluing and marginalising the parent ,which generates a struggle that can continue for weeks, months and sometimes years.
One mother said:
“They (the professionals) made me a monster. At first, I was totally compliant with everything they told me about my son. I would have balanced on my head if they wanted me to . Then I realised they lied to me and started bullying me- now professionals are having to manage the monster they created.”
The very act of questioning the practice of a school or an authority by a parent can result in unleashing of an assault that can leave the parent exhausted. The struggle increases if the parent challenges more than one statutory service and therefore multiple professionals. Such a position can overwhelm parents, with formal letters, procedures , phone calls ,e-mails, and now texts. The communications often contains implied threats or advice encouraging the parent to simply accept that which is being offered by professionals, even when they know this will go against what the parents believe is not in the interests of their child.
Does this mean that parents are always right and professionals wrong about a child’s support requirements? Such an assertion would be absurd. However, when a parent lacks confidence in the support provided by the school or when they are unable to influence the schooling experience for their child,when parents witness their child is disrespected, denied important opportunities, with no friendships the parent is likely to be propelled into demanding change. When a parent is forced to take such an exposed yet principled position, they will be subject to scrutiny and interrogation, by a number of professionals who will hold a different position, at a case conference or annual review. Whilst such formal settings are routine for professionals for parents they can be traumatic.
If individual professionals were subjected to the same degree of scrutiny and interrogation before a panel of critical parents they would, quite rightly, be calling upon their professional associations to represent their position.
The professional in a protracted dispute with a parent will have access to supports throughout the process : they have time away from work, they can hand over to another colleagues, they can have someone to type letters,make phone calls, arrange meetings, they get travelling expenses, they get time off in lieu if they work beyond contracted hours, they can even move to another job whilst in the middle of a serious dispute with a family, and they receive a salary- Professionals have protection from a school or system culture, where professionals will protect each otherkeeping internal disagreements behind closed doors, allowing them to present a united front.No such accommodations are available to parents engaged in the same protracted dispute not of their initiation. When the professional decision is made it becomes bizarrely impenetrable. Parents are patronisingly encouraged to follow the ” Complaints Procedures” if they are “‘unhappy” with the decision. This would be another professional procedure that can take months, with little expectation of changing the original decision.
Being a parent who is knowledgeable about the education system,aware of legislation and particular policies, is not a guarantee that your child will get the support you believe to be appropriate for your child. Being the “Parent” you can be positioned so that your contributions are devalued if they differs from professionals ” in charge” because it is they who the system invests the authority. A mother of a disabled child, who was extremely knowledgeable and articulate about the complexities of her child’s support requirements, she was aware of different teaching methods, how to differentiate curriculum, adapt resourcesfor particular children. This woman wasfamiliar with the range of external agencies able to enhance the support available in school. In addition she was familiar with internal workings of thelocal education authority, where her child attended school. This mother started her professional career as a teacher in the same authority, served eight years as a special educational needs co-ordinator(SENCO), followed by seven years as a deputy head teacher, finally taking on the roleof education advisor. But now she was positioned as a “parent” again she was asking for something different from that which the school was prepared to offer. She was described as being “too involved” and “too emotional” and no longer “objective” This mother was forced into a conflict with the professionals, from the authority she had served as a senior educationist.
How can such exhausting disputes be minimised? Professionals have to learn to listen and listen then listen again first to the child and the parent advocating for their child.
The professionals will have had training, they may well have many qualifications, they can have much knowledge about a particular impairment and yet know nothing about the support requirements of Heathar who may have that particular impairment. Professionals can only support Heathar effectively if they are able to develop a relationship with Heathar. The parent, advocating for their child can be a valuable introduction to Heathar.
If professionals ask questions, to which they don’t already assume the answer they are more likely to develop a meaningful understanding with the child and learn about the child. When a person is genuinely listened too, good relationship happen. This is far more likely to lead to the parent having confidence in the actions of the professionals who are there to serve their child. Professional can also build on a good relationship with the parent when they don’t:
Tell a parent their child is not the only one in the school!
Tell a parent the school does not have the resources to support their child!
Tell a parent that support to their child – will result in support being removed from other children.
Tell a parent that you are an extremely busy person!
Tell a parent that you are an expert in this type of condition, when referring to their child.
Tell a parentthe date and time of a meeting without first checking on their availability.
Tell a parent to come to a meeting on their own
Tell a parent you have to leave their meeting early because you have an important appointment to attend.
Tell the parents of an important decision, just before you go on school holidays.
Give the parent a patronising smile and nod of your head, when you totally disagree with them.
George Bernard Shaw suggested that it was the reasonable person who adapts themselves to the world as it exists. However, it is the unreasonable person who persists in adapting the world to accommodate a different way of thinking. GBS concluded, that all progress depends upon the “unreasonable” person orthe ” bloody awkward” parent?
We read with interest the piece in the Independent by Rachel Reeves and Kate Green regarding Labour’s response to the Work Capability Assessment 
Labour should realise that disabled people are deeply distrustful of any Labour reform of a Work Capability Assessment system, which Labour introduced in the Welfare Act of 2007 with the stated aim of removing 1 million claimants from the benefit system .
Our position has been and will be that the Work Capability Assessment is deeply flawed in its basic concept, not just in terms of the details of its delivery, and inclusion in the workplace for disabled people cannot simply be achieved by a ‘back to work’ test.
In the Reclaiming Our Futures, Disabled People’s Manifesto , we state that a priority demand from government is that:
A comprehensive and strategic plan of action is developed with disabled people and our organisations to tackle the discrimination and exclusion disabled people face in work and employment including: increasing quality and range of personalised support available to disabled people, strengthening disabled employees rights and tackling employer discrimination and poor practice
Other key demands include that:
Economic productivity must not be the only measure of people’s worth and value, volunteering offers as much value to society as paid employment. While we recognise that volunteering can offer additional skills, it should not be the default option for disabled people because of our exclusion from paid work
There must be policy and media recognition that there will always be disabled people who are unable or too ill to work. These individuals must be supported by a publically funded system. They should not be penalised or demonised as they are currently.
For true inclusion in the workplace for disabled people a wider approach is necessary including but not limited to:
• Will Labour commit to the restoration of Disabled Student’s Allowance,
• Will Labour commit to the restoration of the Independent Living Fund,
• Will Labour commit to the extension of Access to Work (AtW) to include unpaid voluntary positions,
• Will Labour commit to the reversal of the reduction of people who currently receive DLA, but will not receive PIP and also lose their Motability access,
• Will Labour commit to the reinstatement of the requirement for councils to produce equality schemes on employment and access
• Will Labour commit to the provision of accessible transport.
• Will Labour commit to the reinstatement of “day one” protection from unfair dismissal in employment law
• Will Labour commit to the provision of Employment Tribunals enforcing mandatory organisation-wide measures on preventing disability discrimination
• Will Labour commit to the provision that all government contracts, at a national, regional and local level, are only awarded to companies that are fulfilling measurable equality targets for the employment of disabled people
(for further points see reference 2)
These currently are some of the barriers to inclusion in the workplace for disabled people, and they will not be fixed by simply amending the WCA. The issue must be seen within the context of the wider interconnected system of barriers in place. It must be seen in terms of what a large majority of disabled people have already identified as key problems.
In terms of inclusion we also need from Labour, a recognition that for many disabled people to be able to work there has to be a nationally transportable social care system with a guarantee that people would keep the same levels of funding wherever they needed to move to work.
We need recognition that there is an onus on government and employers to fully accept the spirit of the Equality Act 2010  with its requirement to the opening of work opportunity to disabled people. Without this, no “fit for work test” aimed at cutting disability benefits will make any impact whatsoever on the numbers of disabled people who can attain and sustain employment.
We also need from Labour a stronger recognition that there are many disabled people who cannot enter the work place and should not have to live in fear of being pressured into doing so.
There is much that the article leaves out and that leaves us with a number of serious concerns and questions.
While we are not yet prepared to endorse in any way Labour’s new approach to the Work Capability Assessment, we do see the article by Rachel Reeves and Kate Green as a helpful starting point for discussions on the future of inclusion of disabled people, who want and are able to work, in the workplace and we would welcome an opportunity to meet with them and discuss this further. We would like meet with Kate Green and Rachel Reeves to ask the following questions:
1. Will Labour commit to stop spending public money on private
contractors and return any assessments of disabled people back to GPs
with medical evidence taken into account as well as give a commitment to
look at the barriers to work for disabled people who can and want to
work (in line with the social model of disability)?
2. Will Labour commit to a time and date to talk with DPAC, My Legal,
the Mental Health Resistance Network, Black Triangle, Deaf activists,
those with learning difficulties ( with an outreach of ½ a million
disabled people) to listen to the views of the largest network of grass
roots disabled people on the WCA and ESA?
3. If Labour are committed to scrapping the WCA when will Deaf and
disabled people, and those with mental health issues have sight of the
detail of any alternative Labour is proposing?
4. If Labour accepts the harm, devastation and premature deaths that have
been an outcome of the WCA why have they chosen to suspend their
prospective parliamentary candidate for St Austell and Newquay, Deborah
Hopkins for speaking out in public about the harm caused by the WCA.
5. Will Labour address the disproportionate harm that the WCA and
sanctions on ESA and JSA are causing to all disabled people, in
particular those with mental health issues and learning difficulties?
6. We along with many others insisted that a centralised Independent Living Fund
for Scotland be established and it has been done. They have also promised to re-open ILF to new users, with a commitment of additional funds and recognition of its importance to independent living and obligations to article 19 of the UN Convention on the Rights of Persons with Disabilities. Why has the Labour
Party not promised to re-establish it south of the border?
Many of the Statements included in this response are taken from the UK Disabled Peoples’ Reclaiming our Futures Manifesto and are endorsed by a UK network of disabled people and Deaf and Disabled Peoples Organisations, including: ALLFIE, Inclusion London, Equal Lives, DPAC, Inclusion Scotland, Disability Wales and the TUC Disabled Workers Committee , who between them reach several million disabled voters. References
1. How Labour would reform the Work Capability Assessment http://www.independent.co.uk/voices/comment/how-labour-would-reform-the-work-capability-assessment-9265479.html
2. The Reclaiming Our Futures, Disabled People’s Manifesto http://disability-studies.leeds.ac.uk/files/library/UK-Disabled-People-s-Manifesto-Reclaiming-Our-Futures.pdf
3. The Green Paper: The new deal for welfare: Empowering people to work. 2006 http://webarchive.nationalarchives.gov.uk/+/http://dwp.gov.uk/docs/a-new-deal-for-welfare-empowering-people-to-work-full-document.pdf
4. Equality Act 2010 http://www.legislation.gov.uk/ukpga/2010/15/contents
We are very much looking forward to seeing everyone who can come to our national conference on Saturday but it is also important that those of you who can’t get there in person are able to take part. There are a number of ways you can do this:
Send messages of support and your ideas for what DPAC should focus on over the next year to email@example.com or @dis_ppl_protest.These will be put up on the graffiti wall at the conference and included in the notes from the day.
We’ve had a great response to bookings for the DPAC conference on Sat 12th April in London, but places are now running out. Please email:firstname.lastname@example.org
with your details, number of places needed and any access needs.
12th April 2014 – 11am until 5pm
London Met University, Tower Building, 166 – 220 Holloway Road, London, N7 8DP
Since we started in October 2010 Disabled People Against Cuts has been at the forefront of the fight against austerity. With Atos on the run, and the bedroom tax on the ropes we are seeing the results of hard campaigning. But there is much more to do to ensure disabled people’s rights to live independently and with an adequate income.
The national conference is a chance for DPAC members to come together, to share experiences and discuss your ideas for moving forwards.
DPAC are working hard to bring to conference a surprise guest, a person who, if anyone has, has been the catalyst for the re-emergence of disability activism in the last few years, someone DPAC has enjoyed a close relationship with from visiting him at home to donating underpants to supporting his select committee appearances.
Workshops will look at: – Where Now for the Independent Living Fund campaign, – Developing a Social Model of Distress, – Winning the Argument, – Disability, Art and Protest, – Building a National Network of Disabled People’s Organisations and Direct Action practical skills among others.
Please note places are limited so priority will be given to DPAC members. For information about joining please contact email@example.com
The venue is wheelchair accessible. BSL and a note taker will be provided. For access information go to: http://www.disabledgo.com/access-guide/islington-council/london-metropolitan-university-tower-building
For access queries including booking parking please contact DPACfightback@yahoo.co.uk
To book places or for more information please contact DPACfightback@yahoo.co.uk
Dozens of young people with learning difficulties and their families have hit out at a decision to slash foundation learning courses for pupils with profound or moderate learning difficulties – from five days a week to three at One, formerly known as Suffolk One, in Ipswich. the link to the article in the East Anglian Daily Times is below.
Suffolk DPAC will be working with them to try to prevent this as the only other alternatives for their education are at special school sixth forms.
As we know segregated classes within mainstream settings do not count as inclusive education. But neither does the forced placement of disabled learners in fully segregated settings of so called special schools, colleges, universities or any other learning environment. DPAC opposes both!
We refer all to our allies ALLFIE (The Alliance for Inclusive Education) for a better understanding of what inclusive education means and how it can be achieved-DPAC strongly supports Inclusive education as a fundamental principle of independent living and as the only way to achieve full equality and inclusion for all disabled people.
Please see the ALLFIE web site for more informaion on inclusive education and get involved in their campaigns
There are many different ways to be involved in the work of DPAC. All are equally valuable. We all have a role to play in campaigning for disabled people’s rights and a fair society, in whatever way we can from taking part in protests to tweeting, from administrative tasks to writing poems, from making banners to conducting research. Every contribution is important, formal or informal. Some ways to get involved are:
–Joining as a member. You will receive occasional urgent action and information updates from us and have the right to vote at our general meetings.
–Signing up to the website for regular information
–updates every time something new is added to our website.
–Joining or setting up a local group. Local groups need to follow the DPAC constitution. Local activity is really important for raising awareness about the impact of austerity on disabled people and leading the way in the fightback. For a list of local groups see HERE
–Linking between DPAC and other campaigns and unions, for example Occupy, UK Uncut, the Anti Bedroom Tax and Benefit Justice Federation, Reclaim the Power, Fuel Poverty Action, Boycott Workfare, the People’s Assembly, local anti cuts groups, local trades councils and trade unions branches.
–Joining or being involved in the running of campaign sub-committees. We currently have sub-committees at different stages of development in the following areas:
oAtos and the Work Capability Assessment
oIndependent Living Fund
oAccess to Work
oReclaiming the Social Model of Disability
oDisability, Art and Protest
oCommunications and social media
oWorking with Disabled People’s Organisations – building a national voice
At the DPAC conference workshops will be held in each of the different campaigns and there will be a chance to sign up if you are not already involved.
–Being on the Steering group. At the conference we need to elect our steering group for the next year. There is more information about this below.
One of the roles we have to make sure we run in a way that follows our aims and principles and is accountable to DPAC members is being on the Steering Group.
Being on the Steering Group is a big time commitment and is often a difficult job because there is so much to do.
For this reason in order to stand for nomination to the Steering Group we need people who can sign up to:
·Minimum of 5 – 10 hours commitment per week
·Corresponding regularly by and checking emails to stay in touch with developments and inputting to the development of DPAC initiatives
·Co-ordinating particular areas of work, involving members widely and working with allies
·Being involved in at least two sub-committees
·Taking responsibility for either co-ordinating or providing an active and supportive link to at least two local groups
·Representing DPAC at meetings, events and conferences sometimes at short notice
·Working collectively and positively within a team of people with contrasting access needs
·Following DPAC principles and values at all times:
oSocial model of disability
oRights not Charity
oInclusive Education (no ifs no buts)
oWorking within the broad left
oEqual opportunities and social justice for all regardless of ethnicity, sexuality, gender, disability, age, faith, employment status, resident status. No to scapegoating of any kind.
It is important we have a diverse steering group covering a range of impairments, equalities strands and areas of the country. We also recognise that due to fluctuating impairments people may need to step back from activity for temporary periods.
The current DPAC constitution sets the number of steering group members at 8 but the current steering group will be putting forward a motion at the conference for members to vote on enlarging the steering group to 12.
All those wanting to put themselves forward for the steering group must be full DPAC members. If you would like to put yourself forward for the DPAC Steering Group please send a 500-700 word statement to firstname.lastname@example.org
explaining why you would like to be on the Steering Group, how you are able to meet the commitment and any existing political/group affiliations before the 31st March 2014.
This text will be put on the DPAC web site-you do not need to be able to come to the DPAC conference on the 12th of April to be considered for election to the steering group, but we’d appreciate it if you could.
We’d like to say a big thank you to the past DPAC steering group for all their work, and invite them to apply again if they wish to
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.
You can subscribe to receive all DPAC web posts or become a DPAC member at www.dpac.net.uk join us on twitter @Dis_PPL_Protest or on Facebook
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/
Since 2010 the numbers of disabled children and young people being forced into segregated education is on the increase, despite the Government’s UNCPD Article 24 (Right to Inclusive Education) obligations to develop a fully inclusive mainstream education system. This year the Government is pushing through SEN reforms that will increase, even further, the numbers of disabled children and young people being forced into segregated education – this is despite David Cameron, in 2010, promising parents of disabled children he would do all that he could to support their choice of inclusive education.
Time and time again, the Government have refused to listen to disabled people and our allies about the damaging impact the SEN reforms will have on the rights for disabled students and pupils to be included in mainstream education – ENOUGH IS ENOUGH!!
We must ACT NOW to tell Michael Gove (Secretary of State for Education) and the Coalition Government that there must be no return to segregation!!
Today we are presenting the following DEMANDS to Michael Gove and the Coalition Government:
Disabled children and young people MUST have a right to be included in mainstream education.
Disabled children and young people MUST have a right to receive support to participate in mainstream education in accessible buildings.
The Local Offer of services MUST support disabled children and young peoples’ access to mainstream education.
Local Authorities MUST continue to have a strategic duty to promote and develop the capacity of mainstream schools to deliver inclusive education practice as set out in the Inclusive Schooling Guidance.
Join ALLFIE’s “EDUCATE DON’T SEGREGATE” Campaign now!
Since 2010 the numbers of disabled children and young people being forced into segregated education is on the increase, despite the Government’s UNCPD Article 24 (Right to Inclusive Education) obligations to develop a fully inclusive mainstream education system. This year the Government is pushing through SEN reforms that will increase, even further, the numbers of disabled children and young people being forced into segregated education – this is despite David Cameron, in 2010, promising parents of disabled children he would do all that he could to support their choice of inclusive education.
Time and time again, the Government have refused to listen to disabled people and our allies about the damaging impact the SEN reforms will have on the rights for disabled students and pupils to be included in mainstream education –
ENOUGH IS ENOUGH!!
We must ACT NOW to tell Michael Gove (Secretary of State for Education) and the Coalition Government that there must be no return to segregation!!
Today we are presenting the following DEMANDS to Michael Gove and the Coalition Government:
• Disabled children and young people MUST have a right to be included in mainstream education.
• Disabled children and young people MUST have a right to receive support to participate in mainstream education in accessible buildings.
• The Local Offer of services MUST support disabled children and young peoples’ access to mainstream education.
• Local Authorities MUST continue to have a strategic duty to promote and develop the capacity of mainstream schools to deliver inclusive education practice as set out in the Inclusive Schooling Guidance.
The Government are threatening to turn back the clock for disabled children and young people with SEN by placing them back into special schools – BREAKING AN ELECTION PROMISE to parents who were told by David Cameron that he would do all that he could to help parents who want their children included in mainstream. Disabled people know through experience that segregated education does not work if we want to live together in society as respected adults.
The Government have removed all the guidance for Local Authorities and schools on inclusive education in their revised SEN Code of Practice which accompanies the new Children and Families Bill. The Guidance helps schools to do inclusion well.
WE KNOW INCLUSION WORKS, enabling thousands of disabled children to access a mainstream education where they can learn, make friends and feel they belong in their local communities – something which is impossible in even the best resourced special schools. Removing this guidance will waste over 20 years of painstaking development in the field of inclusion, leaving the coast clear for the rapid expansion of separate and privatised schools and colleges which is already underway. Parents will lose confidence in the ability of the mainstream to make safe and appropriate arrangements for their children and young people, and will feel they have no option but to accept segregation.
We must stop them now!
Lord Nash has responsibility for steering The Bill and the Code through the House of Lords where amendments can still be made before the final vote. ALLFIE has been trying to get a meeting with Lord Nash but he has either ignored or denied our requests – our patience has now run out! Let us take thousands of signatures to Lord Nash on the 10th December and show him that we will not accept a return to the mistakes of the past which are now threatening a whole new generation of young disabled people and those with Special Educational Needs.
PLEASE Sign the petition and say NO RETURN TO SEGREGATION!