Tuesday, 9 February 2016

We now have a chance to work across sectors and strengthen our message

Health and wellbeing is fast becoming a key consideration for organisations across the voluntary and statutory sector, in health, social care and sport. The government is trying to unpick how this needs to be tackled; the latest government strategy for sport shows a welcome shift in emphasis towards physical activity for all and away from sport for the few; the Care Act enshrines in law the use of personal budgets as a vehicle to better choice and control for those living with social care needs; NHS England want to develop new care models where patients have more choice and control set out in the Five Year Forward View; and Public Health England through Everybody Active, Every Day wants to help us as a nation to ‘embed the thread of physical activity into everyday life’. Despite these big steps forward, there are still caveats to new personalised approaches to health and wellbeing - it all needs to be done at the same time as saving money and cutting budgets. So how do we do all of this with less money?

I think there is lots to learn from the way the local voluntary and community sector reacts to difficult environments - we get creative! We can find ways around the most difficult problems when we are forced to sit down and think about what is important. Some of the best examples of creativity I have seen have come from small scale (but big impact) grassroots organisations. A lot of the time they operate under the radar working with few individuals but helping people to change their lives for the better. Why do those tiny organisations working on a neighbourhood level have such an impact on a person’s life? To me, it is no big secret – when services give people the chance to talk about what they really want in order to live a good life and the information and opportunities to explore how to do this, people tend to feel happier, more confident and connected to their community. It is a user-led approach.


At Disability Rights UK amongst other things, we believe that disabled people should have a say in how services are designed and developed. Get Yourself Active explores this with disabled peoples user led organisations leading the conversation locally and engaging colleagues from health, social care and sport. It is our job to point out the barriers that disabled people face every day and how these make it difficult to be physically active. We are in a time when, to many people, the word ‘personalisation’ has come to mean budget cutting and closures of services. However it is encouraging to see that the ideologies surrounding personalisation have been adapted and adopted across other sectors including sport. We now have the chance to work with these sectors and strengthen the message. We have got some great national and local partners supporting us to challenge perceptions about disability, physical activity and sport with a focus on personalisation and choice.

This blog is featured in the latest GYA update, please take a look at what we have been up to here

Leanne Wightman



Friday, 5 February 2016

Public services: only a means to living full and active lives Rich Watts

There were some headlines recently about how people were using their Personal Budgets. Concerns were raised about whether items like games consoles, a summer house and satnavs were the best use of public money, with the inevitable calls for resources instead to be focused on traditional ways of doing things – beds, staff, medical equipment.

A positive aspect of the debate was it provided an opportunity for people who have Personal Budgets and the professionals who support them to explain why they’re so important in meeting their care and support needs. Kevin Shergold, for example, highlighted:

“The PHB has given us freedom to live our lives as we choose – in a way that’s sensible and cost effective. Developing a severe disability might seem hopeless, but I want people to know that it’s possible to live a good, full, interesting life when you have the right support and choice.”

This gets to what I think is a vital but often unasked question: what is the point of public services and so the money that funds them?

The vast majority of people with lived experience and who have used care and support services say that they want a life, not a service. Their focus isn’t on getting a few more hours of home care here or seeing an occupational therapist there; it’s about living as full and enriching a life as possible.

Norman Kirk – a New Zealand Prime Minister in the 1970s – described it this way:

“People don’t want much. They just want someone to love, somewhere to live, somewhere to work and something to hope for."

He could well have added “something to do”, because wanting to be physically active or play sport is often reported by all people, including disabled people, as a key source of general wellbeing.

The point of public services and the money that funds them, therefore, covers being a means to support wellbeing and achieve what people want to do in their lives – including being active and playing sport. We have already heard from a number of people through the Get Yourself Active project that using their personal budget in this way has changed things for the better.

This means there are three main reasons why I feel Get Yourself Active is such an important contribution:
  1.  It helps to support people who use care and support services and the professionals who work in them to recognise the value of physical activity and sport
  2.  It provides a much-needed wider focus on how Personal Budgets can be used to directly support such activity, and not just focus on traditional ways of meeting people’s needs
  3. And, by the way, it helps councils and their partners meet the general wellbeing requirements of the Care Act.

If this leads to more stories about how Personal Budgets are being used to fund exercise classes, gym memberships or being involved sporting activity, I for one won’t be disappointed. It will mean that public services are doing their job well.

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Rich is a member of the Get Yourself Active Steering Group. He works on the Integrated Personal Commissioning Programme, which is seeking to join up health and social care for people with complex needs.


Monday, 1 February 2016

Guest Post: In The Making

by Dr Nick Taylor, University of Dundee

You might have seen an increasing number of articles in the media about 3D printing and digital fabrication in recent years, predicting that we might soon be able to print plastic objects as easily as we print on paper. It can be difficult to separate the hype from the reality—is it really possible or even particularly useful? Through In the Making, we've been trying to find out what the possibilities are for disabled people.

Digital Fabrication

3D printers work by building up layers of hot plastic into a shape—a little bit like icing a cake with a piping bag. With it, you can easily create small objects in almost any shape you can imagine. This is where most of the attention has been focused, but other technologies exist, such as laser cutters, which use lasers to cut or etch shapes into wood and other materials. Like a normal printer, these devices can be hooked up to your computer, where you create files that tell the printer what to do. This might be a simple 2D image or text for a laser cutter, or it might be a 3D model created using special software like SketchUp.

However, the real revolution isn’t the technologies themselves—it’s what they mean for the cost of manufacturing. Normally, plastic objects are made by squirting melted plastic into a mould. But these moulds are expensive to produce, which means a one-off, custom item is very expensive as well. The cost can only be brought down by using the mould many times.

3D printing is slower and the quality isn't as good (although they’re getting faster and better all the time), but a small plastic object can cost only pennies. This means you can easily prototype new ideas in a way that didn't used to be possible—and if your first one doesn't quite work, you can just tweak the digital design and print off another version at little cost until you get it right.

DIY Assistive Technologies

For disabled people, this raises some interesting possibilities, especially around assistive technologies. Many of the problems with assistive technologies stem from manufacturing constraints: everyone has unique needs, but normal production techniques force us to use products that are all the same. The more specific your requirements, the more expensive the solution will be. Your needs probably also change over time, requiring you to repeat the whole process of acquiring an aid. All of these problems cause frustration and have been linked to high abandonment rates for assistive technologies.

Digital fabrication can overcome some of these problems. It means someone with suitable skills can design their own devices that meet their particular needs at a reasonable cost. This might be anything from a small device to help open jars, to modifications to a wheelchair, or even prosthetic limbs. If it breaks, or your requirements change, you can easily make another one. You can also share your digital designs online or download designs that people have shared, so you don’t have to start from scratch.

The e-NABLE network is one of the most remarkable examples of this in action. It brings together people all over the world who have access to digital fabrication equipment and connects them with people who need prosthetics. A handful of ready-made designs can be downloaded and tweaked to meet the user’s individual requirements, including both functional and purely aesthetic modifications. This is particularly great for children, who quickly outgrow costly prosthetics and who might be nonplussed by boring functional device, but who might be more impressed if they could get a prosthetic with their favourite super hero’s colour scheme!

Moving Past Assistive Technologies

Use of digital fabrication by disabled people doesn't have to be limited to assistive technologies. On In the Making, I've been working with Philip Connolly from Disability Rights UK and Ursula Hurley from the University of Salford, where we’re attempting to explore how we can engage more disabled people with digital fabrication, and especially how we can move beyond treating disabled people as clients who just make use of the end products. During a series of workshops in Salford, we've had many people join looking to build their own assistive technologies, but we've also seen other potential benefits.

Amongst these is wellbeing and inclusion, which I think are best demonstrated by the Men’s Sheds movement. Men’s Sheds are communal workshops, mostly run and attended by retired men. They were first started in Australia in response to mental health problems faced by men, who are typically hesitant to access normal mental health provisions. Men’s Sheds bring men together around a shared activity in a non-judgemental space—and after visiting the Westhill Men’s Shed in Scotland last year, it was clear that the effects were remarkable. Not only were men healthier, but they were contributing to their community by taking on projects in the local area. It’s not hard to imagine how being involved in a community of makers could have equal benefits for disabled people.

But the potential benefits are limitless and there is a real chance that these skills could lead to economic benefits. Being able to rapidly prototype ideas and produce small batches makes it much easier for innovators to bring products to market, and there will undoubtedly be an increasing number of jobs that involve digital fabrication. Like the computing revolution before it, those who get involved at the beginning will be best placed to take advantage. Why not try to put disabled people at the front of that revolution?


If you want to try digital fabrication for yourself or learn more, search for a makerspace or Fab Lab in your local area. They make equipment available at low cost and often have weekly open days. For further reading, try Fab: The Coming Revolution on Your Desktop by Neil Gershenfeld.


Dr Nick Taylor is a Lecturer at the University of Dundee. He specialises in interaction design, especially the use of technologies to support communities and civic engagement. 

Tuesday, 22 December 2015

Your glow in your darkest hour – a poem for Disability History Month



In late October I went on a long, high speed train journey from Audley End to Berlin Hauptbahnhof as part of a pilgrimage to visit the T4 Memorial in Tiergartenstrasse. A memorial to all those people with disabilities who were killed or forcibly sterilised by the Nazis. Standing on a frigid day seeing the memorial with its metal rims and blue panes of glass, I was moved to write many notes. Some of which became this poem.


I hope that this poem does all those who died at the hands of the Nazi Party and all those who survived justice. 


Danke Schon.
The poem is called:
 


Your glow in your darkest hour

O Comrades O forefathers
My once supressed yet stricken ancestors
I cannot see your names on these rims and azure panes
Yet I see all too clearly your shared pain and agony
Of being degraded demeaned and
Ultimately deemed life unworthy of life
By those who had no right to
Look into your eyes.

And yet on this cold grey day
I see a warm blue glow come from you
Tis the glow of hope in your darkest hour
For amongst your fallen weren’t just victims
There were heroes and heroines
That you had allies like Von Schuler and Von Galen
Who for a rare moment held Hitler to account
And some of you like Klara Nowak and Peter Wulf
Started a new front in a generational fight
To ensure that history was never forgotten
Nor endlessly repeated

And so I’ll roar like the great bear of Berlin
I’ll carry our history onwards.
With pain and pride I’ll give my utmost
To ensure that your names never die twice

Leo Capella

Leo is project manager for our I Can Make It Campaign, which is a campaign run by and for young disabled people for better job opportunities. Funded by Comic Relief, it aims to influence existing spending by businesses and local government to open up more job opportunities for young people living with health conditions or disability’. Find out more about the campaign

Monday, 21 December 2015

The Disability Rights Handbook - a brief history


This year, the Disability Rights Handbook turned 40 years old. In this post, we look back at the birth and development of the best guide to disability benefits and independent living there is. 

by Ian Greaves (with contributions from Sally Robertson)

The Disability Alliance

In the early 1970s, state support for disabled people was extremely limited. Outside the Industrial Injuries and War Pensions schemes, there existed only Sickness Benefit and Invalidity Benefit (two contributory benefits paid to those who were incapable of work) and Attendance Allowance (a non-contributory benefit paid to cover the extra costs of personal care).  If you had not paid the relevant national insurance contributions and did not have care needs, support could be meagre. Means-tested assistance was limited to Supplementary Benefits, administered by the Supplementary Benefits Commission.  

With the election of a Labour Government in 1974, there was hope that a comprehensive income scheme for all disabled people would be introduced. A White Paper was published on the subject: ‘Social Security Provision for Chronically Sick and Disabled People’.  Its proposals fell well short of what was hoped for, and the Disability Alliance was set up in response.

It was structured as a federation of over sixty organisations for and of disabled people joined together to press for the introduction of a comprehensive income scheme for all disabled people.  Renowned Sociologist Professor Peter Townsend was elected Chairman.

The birth of the Handbook

The lack of state support available to disabled people in the early 1970s was compounded by the fact that a simple and comprehensive guide to disability benefits did not then exist. The Disability Alliance decided to fill the gap, and in 1976 published the first edition of the Disability Rights Handbook. This edition was produced in conjunction with the then ATV Network’s Link disability magazine programme and the charity now known as Scope. It was edited by Irene Loach, Peter Townsend and Alan Walker.

The first edition was surprisingly wide in scope. It covered social security benefits, services at home, residential accommodation, training and employment – all areas still covered in the latest edition of the Handbook. However, it also covered topics such as ‘sex and physical disability’ and ‘to deny or not to deny disability’. Remarkably, it did so in a mere 32 pages   (compared with the 336 pages of the 40th edition).  

The Handbook develops

The first important funder for the Disability Alliance was the Baring Foundation, which provided a three-year grant towards a disability rights service. The Handbook could now be developed from being just a short summary of the benefits system.

Sally Robertson joined Disability Alliance as rights worker in 1981 and took on the responsibility (amongst many others) of writing the 6th edition of the Handbook. Her aim was to ensure that the Handbook became a classic all-purpose rights guide that could be used as a first source of advice on social welfare rights in general. She succeeded in this and went on to write the next twelve editions.

In the 9th edition (176 pages) she introduced boxes of text giving more detailed information on particular topics. The 10th edition (176 pages) was the first to have the cover redesigned by John Finn of Artworkers, who did a total redesign for the 18th edition, much of which is still seen in today’s Handbook. The 11th edition (192 pages) was the first to require perfect binding with a central spine.

Three major changes to the welfare system took place over this period. Firstly, the responsibility for Housing Benefit, the help available to cover rent, was transferred to local authorities in 1983. Secondly, Supplementary Benefit was replaced in 1988 with a new means-tested benefit: Income Support. Finally, Disability Living Allowance (DLA) was introduced in 1992 (replacing the existing Attendance Allowance for those aged under 65 and Mobility Allowance). All these were explained with clarity in the Handbook.
Following Sally, Judith Paterson took the helm, editing the 19th through to the 26th editions. She was aided by a team of external contributors, who had experience and expertise in a number of specialised fields.

Judith heralded in Incapacity Benefit (replacing Invalidity Benefit) and a new appeals system. Judith continued the high quality of work that Sally had achieved and thus consolidated the Handbook’s reputation. She was supported by Deb Kamofsky from Anderson Fraser, who provided (and continues to provide) the design and production management of the Handbook.

I took over at the 27th edition, and have been aided by a production editor, Paula McDiarmid. During my tenure, the Tax Credit system has been introduced (providing support for families with children and people on low wages), Employment and Support allowance has replaced Incapacity Benefit and the Personal Independence Payment has replaced DLA for those of working age.

The Handbook continues to represent a team effort, and much of the work of my predecessors remains and continues to define the current work. As Sally Robertson aptly paraphrased John Berger in the 13th edition: “in no society is any product the exclusive result of one person’s effort. Many contribute. In many different ways….. Any mistakes, though, are my own.” 

Looking forward

The Handbook reached its current size of 336 pages at the 39th edition, when it included a new section covering Universal Credit, the new benefit that will eventually replace six current means-tested benefits. The current edition covers the changes wrought by the 2014 Care Act.

As we look to the future it is clear that a formidable challenge is presented by devolution. As the social security systems of the UK nations become increasingly divergent, how do we ensure that each is covered properly? And despite the protestations of successive governments, the system is still becoming increasingly complex. How do we avoid the Handbook growing to a tome of a thousand pages, at which point we could hardly call it a Handbook!

Come what may, we will meet these challenges. The Handbook is still the most popular book of its type in the UK by a long shot, selling over 13,000 copies at the last edition. It is bought by those working in advice, social care and health and by many of the officers actually administering the social security system. But the most significant section of our readership remains the people with disabilities and long-term health conditions who have come to rely on the accuracy and clarity of the Handbook over the years. We look forward to the next 40!

You can still get hold of a copy of this year's handbook.

 




Friday, 18 December 2015

The world's most famous disabled people

Emily Blunt, actress
This blog is brought to you by Corrin, our apprentice at Disability Rights UK.

Have a disability or medical condition? You are not alone. Many people with disabilities have contributed to society, including actors, celebrities, artist, world leaders and many other famous people. Disability is often used to refer to individual functioning, including physical impairment, sensory impairment, cognitive impairment, intellectual impairment, mental illness, and various types of chronic diseases.

Of course there are also millions of people worldwide who may not be famous in the sense society deems famous, but still live with, battle and overcome their disabilities every single day of their lives.



David Weir, paralympian
Ellie Simmonds, paralympian 

Richard Whitehead, paralympian




Stevie Wonder, musician
Itzhak Perlman, musician
Cher, musician

Keira Knightley, actress

Orlando Bloom, actor



Henri de Toulouse-Lautrec, artist
Vincent Van Gogh, artist

Stephen Hawking, scientist
Corrin works on our I Can Make It project which aims to expand employment opportunities for young disabled people. You can read more about the project here, or watch a project video here and here. You can also read a piece Corrin wrote for us here.




Thursday, 3 December 2015

International Day of Disabled People: 2 pieces on the Social Model

Disability Rights UK believes we are disabled by society’s barriers – of behaviours, attitudes, cultures, structures and environments. We work for a society where everyone can participate equally, where those barriers are removed. We base our work on the social model of disability. We want to debate the specific ideas that will help us progress in the next decade and beyond, that will work for new generations of activists and for new situations and challenges. 

We are publishing 2 pieces here: one from Alun Davies, who has been involved with disability equality and rights since the early days of activism, on why we should stick to the social model; and one from Philip Connolly, DR UK’s Policy and Development Manager, on new ways it could evolve. The ideas Philip outlines here are not DR UK policy – they are ideas to stimulate debate. 

We want to hear your thoughts and suggestions - you can get involved on social media, by email or in the comments below. Please note: we do our best to respond to queries but we may not always be able to reply immediately. 

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The Social Model Of Disability: If It Isn't Broke Don't Fix It!
By Alun Davies

Liz Sayce and I are both on a national committee. Over lunch in September we had an entirely friendly but lively debate about the Social Model of disability. At the end of it Liz asked me if I would put my thoughts in to an article. I agreed - so here goes.

Before I start I had better explain who I am. I acquired my impairment at 14 and when to two segregated schools before University. It was there that I went one October evening in 1985 to a meeting organised by a local Disabled People Led Organisation and first heard about the social model. From that moment I was hooked and I spent the next twenty-five years actively involved in disabled people's politics. I worked for several disabled people's organisations, was active in national groups and chaired the disability committee in the Equalities and Human Rights Commission. For the majority of my activism I would describe myself as firmly on the radical end of the spectrum of disability politics. I ended my active involvement in 2010, and by the end I had mellowed a fair bit.

What has not changed though since that meeting, and I cannot believe it ever will, is my absolute conviction that the Social Model is right. Further, in my view, it does not need to be and should not be revised or changed in any way. I am aware of debates and discussions that have been happening over the last decade with people calling for significant revisions and changes, but why am I so convinced no change is best?

The first reason is why what I heard in 1985 got to me then- it just makes complete and total sense. Since acquiring my impairment I had always felt confused by how society was reacting to me and my relationship with it. The overwhelming feeling I had was that society had a fundamentally negative view of me because of my impairment, and of my impairment itself. And at the same time it seemed to be blaming me for the difficulties I was experiencing. Almost everything I saw, heard and experienced seemed to be saying that my problems were because I was blind and the only solution seemed for me to be cured.

My experience though did not seem to fit this view. Almost every difficulty I seemed to face was not due to my blindness but because there were all kinds of barriers facing me. So when I heard on that October evening that almost all the problems I were experiencing weren't to do with me and my impairment but the way society treated me because of a deep-rooted, institutionalised set of negative ideas which created discriminatory structures was absolutely a light-bulb moment. I suddenly felt and realised that I could feel pride and confidence in myself because the challenges I was experiencing were not because of me, or my fault. Not only this, but what I was experiencing could be changed, and not by me having to change but by changing the society in which I was living. And that would increase my own positive identity, because I could help bring about change. I will never be able to properly replicate in words the liberation that this realisation gave me.

The other main reason for me why the Social Model does not need to be changed is that it was never meant to be the thing that many people who call for it to change think it is. It is definitely not a comprehensive definitive analysis of disability with clear solutions for all disabled people and every issue. The Social Model is only a political analysis of disability. Yes, I think it’s correct and still valid today, and will be valid in 100 years, but it is only a model. The comprehensive all-embracing solution people are calling for are Disability Equality policies and practice founded upon the Social Model. It is these policies and practice that turn the Social model analysis in to reality. It is these that should address all impairment groups and the issues of access, employment, transport etc. And a Disability Equality policy can only exist if it is founded upon the social model. Political and structural change can only come about from a political and structural analysis and this is only available from the Social Model. Otherwise if you just have a disability awareness or charitable approach all you get is piecemeal reform and not genuine change.

So for me - let's leave the Social Model as it is. Let us keep it as the solid basis for the on-going struggle for full equality of opportunity and treatment for all Disabled people irrespective of their impairment. The one aspect where I did think Liz had a point was over terminology. One of the other things that attracted me to the social Model was identifying myself as a "Disabled person". And why this was important was because it signified to myself and to others that my difficulties were not due to me but what I was experiencing because the "disability" in "Disabled" meant the specific form of social oppression I was facing. The point Liz reasonably made was why should we identify ourselves with the oppression we experience? That doesn't of course mean we move to the individual medical pathology nonsense of "people with disabilities", but I do accept the point that perhaps we need to develop a different form of description remaining within the model.

So there we have it. No doubt I will have responses to this article across the spectrum, but that is great. If there is debate that means people care, and when politically active and aware disabled people stop caring about the Social Model then we have not got a liberation struggle any more. Thanks for reading.


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The Social Model of Disability: Going for an upgrade?
Philip Connolly 

Sartre spoke of ideas liberating us whilst they are being developed and then imprisoning us once they are formed. The politics of disability is a case in point. The social model liberated us from the confines of the medical model of disability. It gave us a voice to say that we were not to blame for our own exclusion. We were not responsible for the creation of the barriers of language, procedure, design or decision that prevented integration with everyone else who didn’t share our impairment. The rights based approach was similarly uplifting: at last, we had the same entitlements as anyone else and could enforce them through the legal system.

However, just as we realised that there was a problem with the medical model of disability, it is now becoming clear that the models and approaches that replaced it are not without their own problems. The social model of disability suggests that it is up to us to persuade others, and to create sufficient mass opposition to effect the change we need. This model has created its own barriers for decision makers, who sometimes even now lack the impetus or motivation to understand it. The social model of disability may even have disempowered us by making us think that only these decision makers could effect change and not us.

So who has the responsibility for effecting change?  

Surely after four decades of only partial success, we need an upgrade to our ideas. I recently went to the factory of one of the leading car manufacturers in the world. Their enticing video said: “Everything starts with an idea and if it’s a good one, we’ll do it.” If we can upgrade cars, computers indeed every piece of kit or every previous accepted scientific model, we can surely upgrade our understanding of disability. My suggestion is that we can marry the social model of disability with the rights-based approach. We can even go further again with an upgrade based upon the human capability for adaptation and our ability to learn how to change things, including and especially ourselves.

True technological advances come when we use our creativity to imagine what we could do that is altogether new, not what we can do to replace something others deem to be ‘missing’. Why make a prosthetic leg that only functions as a leg, when it could be so much more?

A key ingredient in all this is resilience. Resilience offers disabled people some powerful new opportunities: it is rooted in an understanding of our bodies and minds – we are already resilient people. We have already uncovered its strength to adapt to our disability; now, the non-disabled need to learn its strengths to adapt to losing jobs, relationships, status and so on; and to huge changes in our world, from the environment to changes in how we communicate. We have a lot to offer to the non-disabled world. Further, resilience roots power back in the individual – you can endure or survive but you can also thrive, despite the efforts of others to thwart you. And we can use the power of resilience to show how organisations and whole societies can better handle economic and other shocks. We can use our individual and our collective powers to help people learn how to handle the slings and arrows that come along.

Resilience can be learnt and it can be transferred to others, and disabled people are the best equipped to do the teaching to a world increasingly hungry to learn the lessons. Non-disabled people are starting to seek out that experience and organisations want to absorb it too. The only real challenge then is to organise that transfer. The good news is that the tools already exist to help us – and we have the creativity to imagine the rest.





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