Kanga and coke - 100 Voices 2013
Yesterday was the third annual 100 Voices conference held by Brandon Trust.100 Voices has grown impressively since it started, yesterday was more like 200 voices and the venue felt a bit crowded.Having covered both employment and transport at past events, this year the subject chosen through the area forums was personal safety ie hate crime. It was great to see so many different organisations attending to give presentations or supply information - the MP Charlotte Leslie came along for the morning and gave a speech, there were police community support officers with safety devices to give away and beautiful bulging biceps (I'm not certain the biceps were a requirement but I feel they should become so every year) a police inspector who spoke, the lord mayor of bristol and many more. This year Billy who has moderate learning disabilities compered the whole event and did an amazing job - watching him tease the police inspector about all the senior officers he claimed to know was hilarious as the inspector clearly thought Billy was a senior staff member who was astonishingly well connected!
The standard of presentations is very high, each user forum group puts on their own show - this year we saw a reconstruction of the kind of daily harassment people with learning disabilities experience on public transport and a brilliant performance of 'our house' by madness which the team had rewritten to explain their lives. Just fantastic!
Of all the events I get asked to speak at 100 Voices is the most difficult to prepare for and the most rewarding. Usually I try to do something positive and upbeat, but that was a tough task covering hate and mate crime. In the end I decided to talk about friendship, what it means and how we can tell when someone isn't really a friend but trying to take advantage. I used some quotes from Winnie the Pooh and we went through some example scenarios of friends and people taking advantage.
You can always tell when a speech has hit home by the people who come to tell you their experiences afterwards and yesterday I was overwhelmed. There were hugs and kisses to express shared emotion and one lady who has come to speak to me every year but then been too shy to say a word dragged me off to see her Kanga bear and told me all about how it makes her feel safe and how much she loves Winnie the Pooh. It was just so fantastic to see someone who in previous years couldn't really manage a word effusive and excited to explain things to me. I'd talked a lot in the speech about how people can sometimes tell disabled people we have to pay for them if we want to go and do something and there was a lot of feedback on that issue, some of it very worrying. But right at the end of the day when I was leaving two of the guys came over with a drink they'd bought for me - it took a while as they both had challenges with verbal communication but by using mime and the odd word they explained they had bought me a drink to say thank you to me. I've been bought many a posh drink, especially in my younger, wilder days but this slightly flat cola was without doubt the best drink anyone has ever bought me.
Labour Announce Independent Task Force - Takes Aim At Disability Poverty (Press Release)
Labour takes aim at disability poverty
Labour today launched a new taskforce led by Sir Bert Massie, to look at ways to break the link between disability and poverty.
Launched as Disability Living Allowance is abolished nationally, the taskforce will review ways of helping disabled people meet the extra costs that disability imposes and recommend changes to the social security system to maximise disabled peoples’ control over their own lives. The taskforce will focus on better use of existing resources.
The launch of the taskforce follows Ed Miliband’s speech on modernising social security in which he said a Labour government will reform the government’s failing programmes to help support more disabled people into work.
Recent figures revealed disabled people are twice as likely to live in low income households than non disabled people - yet the government's 'strivers tax' will push 50,000 more disabled people into poverty while the DWP's Work Programme is failing to get 98.7 per cent of disabled people into jobs.
The taskforce will be headed by Sir Bert Massie CBE. Sir Bert is disabled and was previously the CEO of The Royal Association for Disability and Rehabilitation (now Disability Rights UK) and Chairman of the Disability Rights Commission. He is currently a Governor of Motability and of Liverpool John Moores University.
Labour today launched a new taskforce led by Sir Bert Massie, to look at ways to break the link between disability and poverty.
Launched as Disability Living Allowance is abolished nationally, the taskforce will review ways of helping disabled people meet the extra costs that disability imposes and recommend changes to the social security system to maximise disabled peoples’ control over their own lives. The taskforce will focus on better use of existing resources.
The launch of the taskforce follows Ed Miliband’s speech on modernising social security in which he said a Labour government will reform the government’s failing programmes to help support more disabled people into work.
Recent figures revealed disabled people are twice as likely to live in low income households than non disabled people - yet the government's 'strivers tax' will push 50,000 more disabled people into poverty while the DWP's Work Programme is failing to get 98.7 per cent of disabled people into jobs.
The taskforce will be headed by Sir Bert Massie CBE. Sir Bert is disabled and was previously the CEO of The Royal Association for Disability and Rehabilitation (now Disability Rights UK) and Chairman of the Disability Rights Commission. He is currently a Governor of Motability and of Liverpool John Moores University.
Anne McGuire said:
“The government’s so called welfare revolution isn’t helping disabled people, it’s pushing them into poverty. I am delighted that Bert Massie has agreed to chair the taskforce. The members of the group bring a wealth of experience, either as disabled people or those who have worked with disabled people. I am sure they will throw down some interesting challenges to us as we seek to improve the lives of disabled people.”
Sir Bert Massie said:
“Even in an age of limited resources there are more humane and better ways of supporting disabled people than this government’s unprecedented assault which has left millions of disabled people facing greater poverty. I welcome the determination of the Labour Party to seek ways of enabling disabled citizens to play a full role in society and to provide the support to bring this about. The report of the taskforce will suggest ways forward.”
Notes to editors
1) Other members of the taskforce are:
Dr Roger Berry - is a former Member of Parliament and is heavily involved in disability issues. Prior to becoming a Parliamentarian he taught economics at Bristol University.
Agnes Fletcher - advises organisations on equality law, policy and practice. She was a Director at the Disability Rights Commission for five years, has provided consultancy to the Equality and Human Rights Commission and other public bodies and has worked as an advisor to government. She is a disabled person.
Neil Crowther – is an independent expert specialising in human rights, equalities and disability rights. He was previously Director of Human Rights at the Equality and Human Rights Commission. Before joining the EHRC he was Head of Policy at the Disability Rights Commission.
Kaliya Frankin – is a disability activist with a deep interest in social security issues. Disabled herself, she campaigned against changes to disability benefits introduced by the coalition government.
Ian Greaves – is the principle author of the highly respected Disability Rights Handbook.
2) Ed Miliband announced this week that the Labour will reform tests for disability benefits so that they aren’t just about the benefits people get but about supporting people to work.
Labour introduced tests for ESA because those that can work should do so. We support tests for DLA & PIP to ensure the benefit goes to those that need it.
But the test needs to improve. When 42 per cent of people are winning their appeals, the Government are clearly not getting it right.
But we want to go further and deliver real savings by supporting disabled people into work and raising the employment rate for disabled people in the UK. We would do that by making the tests as much about what work people could do and the support that would be needed to make that happen, as they are about whether or not someone gets a given benefit.
3) On Monday 10 June new claims for Personal Independence Payment will start in all parts of Great Britain. There will be no new claims to DLA for people aged 16 to 64.
Mountains for Mia - can you help Mia communicate?
Mia Austin is a young woman from the Wirral. In 2009 when she was just 21 and working as a travel agent Mia suffered an enormous stroke and developed locked in syndrome. This means that although Mia can see, hear and understand everything going on around her she cannot move or communicate without moving her eyes. Local people have fundraised for Mia so she can live at home with her family and she has some computer equipment which allows her to write poetry. Mia has just written a booklet 'hot potato' telling the story of her lifeLike any young person Mia can be frustrated by technology that isn't fast enough, but unlike most Mia's computer is literally her lifeline to the outside world. Mia needs a new computer and a specialist physiotherapy machine so she can continue having proper rehabilitation at home. These two pieces of equipment cost £23000 and £7000 respectively.
Mia's website, Mountains for Mia has more information & details of how to donate http://mountainsformia.co.uk/index.html
The Right To Live And The Right To Die - #BADD2013
There are two bills scheduled for debate in the House of Lords in the near future, at first glance they may seem completely unrelated, but in fact are inextricably interlinked - social care and assisted dying. The vast majority of rules and regulations which govern the lives of disabled people are legislated for by those without disabilities, although there are a handful of disabled Peers or MP's, these two bills are no exception from that dissonance between those who make rules and those who have to live by those rules.Social care is currently in a precarious state - a system that was already stretched to breaking point prior to the change in government is fracturing at the seams from the cumulative impact of austerity and ignorance. When social care is mentioned in the media the primary focus is always on the care (or lack of) provided to older people, but working age disabled people make up a third of the total recipients. Of these working age disabled people, those with the most severe disabilities who were previously able to access the ILF to match the funding provided by their local authority, will all be funded fully from their local authority, who of course will not be provided with a commensurate increase in funding from central government, but will have to attempt to accomodate this extra cost burden from within existing adult social care budgets, which are being reduced by an average of 28% by 2015.
Accessing social care as a working age disabled person is far from easy - it involves a lengthy, complex process of assessments, tick boxes and in most local authorities a pretence of choice. In reality what that tends to mean is that the disabled person only has choice and control over their life if their choices match those their social services department deem acceptable. This means that even before the full impact of budget reductions to Local Authorities, the closure of the ILF and other welfare cuts impacting on individuals and communities the vast majority of adult social services departments are breaking under the strain. Once past 2015, factoring in the full impact both of budget restrictions and the potential loss of income to Social Service's departments currently paid by charges from the care recipients DLA award as disabled people move through the new PIP assessment, which the government predict will be available to 600, 000 fewer disabled adults, the situation will become catastrophic.
So, what does all this have to do with assisted dying? Its simple - quality of life. We can all empathise on a very human level with people like Tony Nicklinson. Tony felt his life as a quadriplegic was intolerable and before he died of natural causes, he campaigned for the right to die on his own terms. For me, there is a particular, personal concern about assisted dying and high level spinal cord injury - the instability in my neck means that such an injury is more likely for me than the average population. This means I have considered how I would personally feel in such a situation. The only honest thing I can say with certainty is that I do not know how I would feel about facing the future with such a significant disability, and that I hope, but can't be sure I would eventually adjust to the situation and find a new, different quality of life. But I don't know that - it could be that like Tony I would find the situation unbearable and be desparate but unable to end my own life.
Despite that, I still firmly believe that legalising assisted dying in the current socio-political climate is dangerous and should be prevented. The 'social model' is a theoretical model created by disabled people to demonstrate that it is actually an inaccessible society which causes disability, not the primary, medical model based idea that impairment is caused by failings on the part of the individual, ie disease or disability. The social model does not seek to cure, but to explain that with the removal of barriers to access, participation in society increases consequentially. Although the social model can be controversial amongst disabled people, applying its inherent principles to policy making is one way of making them as accessible to as many people as possible. Improved physical access doesn't just benefit disabled people, but if done properly, everyone - older people and parents with young children.
It can be argued that assisted dying sits firmly within social model territory - if a disabled person requires access to live independently then the assistance to end their life is as much a right as the assistance to live their lives. But therein is the inherent problem with both social care and assisted dying - there is currently no easily enforceable, statutory right to the care, equipment and financial assistance disabled people need to live a truly independent life. Within a rights based framework the right to die would fit alongside the right to live - after all being born and dying are the most natural part of any human life and with the correct assistance disabled people can be enabled to make that choice for themselves just as they can be enabled to parent, shop, swim or work.
This brings us back to issues surrounding quality of life - with the correct support to live an independent, self determined life disabled people can make their own value judgement on their quality of life. However, with many disabled people no longer qualifying for welfare benefits or social care that quality of life is impaired by not having the right to the support needed to live independently. It can be argued, successfully I suspect, that without that right being present there is an element of duress in every situation that might lead to assisted dying. As Lord Scarman described so well in relation to economic choices within contract law;
"The classic case of duress is, however, not the lack of will to submit but the victim's intentional submission arising from the realisation that there is no other practical choice open to him"
This element of choice is critical, especially within the framework of austerity. Consider what makes most people feel their lives are worth living - being a member of a family, having friends, being able to work, to socialise, to have hobbies or interests. Whatever those individual choices are they are too an extent universal - the security of those factors is what makes most of us happy. Lord Scarman is talking about contractual decisions, but it applies perfectly to assisted dying because what that is really about for most people is practical choice.
The government have made certain practical choices to deal with austerity - they have chosen to place the burden of cuts on the most vulnerable. This in turn affects the ability of individuals to exert practical choice and control over their own lives. Without sufficient support to access society, to participate in everyday activities quality of life is severely reduced. If the practical choice is available and enforceable to have the support to access all those essential areas of life, then the nature of that individual value judgement on their quality of life changes. Without that practical choice there is an inherent element of duress in every decision about living, let alone dying. Within the legal framework surrounding economic or contractual decisions, the contract is considered to be void if there is an element of duress, it does not take an enormous leap to understand how that element of duress present in decisions about assisted dying should equally mean the decision is considered void and therefore should remain illegal.
The fear of becoming disabled is widespread in society, disabled people are used to hearing people tell us that 'they would die' if they couldn't 'walk, run, swim, work' etc. The reasons for this are complex, partly based upon fear of the unknown and the prejudicial attitudes to disabled people inherent in society. Its also understandable, less than 10% of disabled people are born with their impairment, the vast majority will become disabled in adult life, whether via accident or more commonly illness. Becoming disabled is distressing and challenging, but the vast majority of people go through the stages of grief and eventually learn to be happy with a very different life than they may have expected. Different can often mean more rewarding.
That understandable fear means that most people do not realise that living as a disabled person can be a happier, fuller life than it was before disability. It means that people see death as a better option, not knowing that disability is just one of the many experiences life throws at people, and that it is how we as individuals are able to deal with those experiences which most influences that qualify of life.
Today is the eighth annual Blogging Against Disablism Day (#BADD) hosted by the fantastic Diary of A Goldfish. It will be my seventh #BADD and I've watched with interest and sadness how the focus of many of the blogs written for the day have moved away from independent living to the impacts of austerity. Cuts to welfare impact human beings, particularly so upon disabled people. Quite literally, when the government cut, we bleed. The consequence of increased poverty and exclusion from the world is one issue, but when put alongside the increased focus on working it is quite another. What this means in practical terms is that it was quite bad enough for disabled people when all we had to deal with was exclusion - it is frustrating to be unable to access the world because you are excluded by that world, but a terrifying Orwellian nightmare to be excluded, blamed for that exclusion and expected to participate more fully.
So, until such time as all disabled people have a legally enforceable right to independent living I will, albeit reluctantly, remain opposed to and campaign against assisted dying. I will put my time and effort into something which would benefit all our lives, where the right to assistance to die is built into that framework of the right to live, where if assisted death is an individual's choice it can be made freely and without duress.
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