Monday, 2 March 2015

Spirit of Achievement: Why We’re Laying down a Challenge for Inclusive Arts

What does disability mean nowadays? Is it the way you look? The way you talk? Maybe that’s where the thinking once was, but I’m pleased to say that thinking has (albeit slowly) moved on; that it’s not about who or what you are, but how easy it is for you to participate in society on equal terms.

However, still we see a lamentable underrepresentation of disabled people in the social, cultural and political life of their communities. And the world of culture and the arts is no exception. Highlighted in last week’s report from the Warwick Commission, only 3% of those involved in participatory arts self-identify as being disabled, compared to around 18% of the general population.

That’s why I’m delighted we’ve launched our Spirit of Achievement Arts and Culture Challenge Fund. We are currently inviting applications from projects that increase disabled people’s participation in the arts and cultural activities – that means theatre, painting and drawing, literature, music dance – any art form. We want to be as accessible as possible, so we use broad definitions of both arts and disability. On the advice of our Spirit of Achievement Panel, chaired by Paralympian swimmer Susie Rodgers, and including prominent disabled artists Rachel Gadsden and Tony Heaton, we have adopted a broad definition, embracing mental health, learning disabilities and long-term life-limiting illness.

We’re particularly keen to hear from disability led organisations, and those which support disabled people to participate on equal terms with their families and friends. Organisations working in Northern Ireland are also of special interest to us. Even if you don’t quite tick those boxes but you are an arts or cultural body with an exciting and innovative proposition, do please visit for more information and to download the application form. And do note the closing date of 9am on Monday 20 April. 

A commitment to challenging and changing the perceptions of disabled people is at the heart of Spirit’s mission. Arts and entertainment touch people’s lives and emotions in a very raw and immediate way, and are so often the catalyst for the kind of attitudinal shifts we all want to see.  Therefore as we push for change it’s more important than ever that spaces and opportunities exist for disabled people to participate, perform and create on equal terms.

Finally, there is another announcement to make. Spirit is seeking to engage wider audiences of disabled and non-disabled people to help us succeed in our mission, and so I am delighted that Liz Sayce has agreed to support us, and help to represent disability led organisations across the UK by joining our Spirit of Achievement Panel. 

Debbie Lye, Chief Executive, Spirit of 2012

Thursday, 26 February 2015

Actively seeking new ways for you to spend your personal budget

My name is Leanne Wightman and I have just started working at Disability Rights UK. My new role is to manage a Sport England funded project about developing opportunities for disabled people to access sport and physical exercise using personal budgets.  I am really excited about the potential this project has to raise awareness and the opportunity to develop practical ways for disabled people to take part in activity which is right for them.  

The project is taking place in Cheshire, Leicester and Norfolk and will develop local opportunities with sport and activity providers, work with contacts in local authorities and most importantly support disabled people to access the opportunities that interest and inspire them.

I see this project as presenting some real opportunities for change through;
  • Identifying solutions to the issues that disabled people face in accessing sport and physical activity
  • Developing the capacity of sports providers and the community to offer accessible opportunities for disabled people to take part in sport and physical activity
  • Involving disabled people in the development of these services and creating opportunities for people to play an active part in their community
  • Encouraging different ways of thinking about how personal budgets can be used creatively to include sport and physical activity
It is exciting to think about how this project can change the thinking around personal budgets – for sport and activities rather than just care and support. I hope we can influence support planners, social workers and commissioners in the three pilot areas. I also want to see disabled people more supported to access opportunities in their local area.
Each pilot site has employed a dedicated coordinator for this project and they will be working with disabled people, providers, commissioners and health and social care professionals to make it work locally.  

If you are a disabled person, family member, sports organisations or health or social care professional in one of the three pilot sites please get in touch with my colleagues in Leicester, Cheshire and Norfolk for more information and ways to get involved.  

It is really important that we can have an impact in the three pilot areas but we also want to develop a strong national presence.  We are building support from key individuals, groups and organisations working with disabled people and in the world of sport and physical activity and want to get as many people interested as possible.  If you are interested in supporting us, whether that be through talking about our project or helping us to steer it please get in touch with me, I’d love to hear from you. 

For more information email

Monday, 23 February 2015

Zoe’s story: The Value of advocacy

How I got my six month placement with SEETEC

My previous advisor told me that I could do a six month paid placement in a nursery. I was really interested in this option. My advisor then left in April 2014 and then I had another advisor. I was told by my new advisor about the Work Choice Program and that I had an option to do the paid work placement for six months, as I have been working voluntarily.

On Wednesday 28th of May 2014 I had a meeting with the person who was in charge of organising paid work placements to discuss the six month placement. I said that I would be interested, as I am volunteering in a nursery. I would like to approach them to discuss whether they would take me. In order to be professional, I suggested that I should ask them first before they were contacted by SEETEC.

On Monday 2nd June I spoke to my boss and to the head teacher of the nursery school and they said that they were happy for me to do my work placement with them. They asked me to ask SEETEC if there was anything that they needed to do. I phoned the person in charge of organising work placement on Thursday 5 June 2014 to inform her that the nursery that I was volunteering at the time was happy with me doing my paid placement. I texted the person who was organising the paid placements the details of where I volunteered and the name of my boss, so that she could arrange a meeting to discuss when I start my work placement.

When the person in charge told me that she had not been able to get hold of my boss, I gave my boss the person in charge of organising the work placements the contact details, but unfortunately whenever my boss called the person in charge of organising paid work placement, she was unable to get hold of her.

On Thursday 10 July I phoned the person who’s in charge of organising work placement to ask if she could phone my boss to discuss my paid placement only to be told that there was no funds in the pot and that the chance had gone. This was the first time that anyone had told me that there were limited funds and that I was in competition with others.

I was very disappointed and felt that I had not been treated fairly. Firstly, it was not my fault that my first advisor had left and I had no idea why the person in charge of organising placements was unable to contact the school when she had their details for well over a month. The school was very keen for me to stay but then I would have to go back to the school on Monday and tell them that it was all off. Which would have make me look incompetent and it was to be extremely embarrassing.

So I’ve then phoned Disability Rights UK and wrote to my MP for advice about what to do next as I felt that I was being treated really badly. I also did a lot of research on this and found that I was not the only one who was having the same problems. 

Disability Rights UK phoned me back to find out more about what had happened to me, whether they could phone SEETEC. They phoned SEETEC up and talked to my advisor on my behalf and then they phoned me back to inform me of their discussion. And then I went on holiday with my family to get away from everything. When I got back I received a text from SEETEC, asking me to call them back and talk about my work placement. I phoned them and said that I was still interested in doing the work placement, then they spoke to my manager at my work place at and to arranged a meeting with them to discuss what was involved and to sign off some paper work. If it was not for Disability Rights UK I wouldn’t be where I am now I am very grateful for their support and encouragement. My advice for anyone, is not to give up when something like this happens but fight it. It’s worth it in the end.  

Tuesday, 21 October 2014

Purple pound, perhaps more real than you think

I have long argued that notice of the availability of the Access to Work scheme ought to feature on our money and stamps.

Everyone uses them and every day. It’s the mass marketing campaign the Government is already investing in so why not ensure that it has a social impact. Access to Work would no longer be the Government’s best kept secret.

Fanciful? Well no! last month the chancellor George Osborne initiated a competition to design a new pound coin. It’s a competition everyone can enter. There are of course rules and these can be viewed via the Royal Mint’s website. Designs need to be submitted by October 30th.

The chancellor invited people to think about the qualities of Britishness. He may have been thinking of our quirky nature, our sense of humour, our love of standards and outrage at double standards, our gift for non-conformity but I prefer to think about the resilience of disabled people. I shall be entering the competition myself and would encourage readers of our website to so too.

Philip J Connolly, Disability Rights UK Policy and Communications Manager.

Tuesday, 29 July 2014

Disability, Let's Talk About The Barriers

The Fabian Women's Network invited Disability Rights UK to send someone along to their event to discuss and debate “Disability, Let's Talk About The Barriers”, so I went, and I did.

I said that Disability Rights UK doesn’t want to see the debate framed in terms of “inclusion for the ill and disabled” or in terms of “the damaging narrative in which the most vulnerable are demonised and blamed rather than supported and included”. The problem with such a framing is that it risks portraying disabled people as one group who are all passive recipients of care and it doesn't do enough to recognise that disabled people can make important contributions to society.

Personally, I think it’s important to make more of a distinction between different experiences of disability. It’s important that we come together as ‘disabled people’ to unite on significant campaigns for rights, like rights to independent living; but we also need to understand our differences. Disability clearly encompasses enormous variety and any categorisation is problematic. But broadly there are people with severe impairments or health conditions, who need a lot of support and major adjustments to be able to participate in society; and people whose impairment, with simple adjustments or even none at all, mean they can take part much more easily.

Of course some impairments are permanent, some fluctuating, some progressive; and attitudes towards people with different impairments differ as well (for instance, attitudes towards someone with schizophrenia are different to attitudes to someone with a hearing impairment – both face barriers, but the barriers are different). 

Disability Rights UK talks of people with lived experience of disability or long-term health conditions – to give a sense of this variety.

For me, after being at Disability Rights UK for three years, I still find that if we talk only about "disabled people" we can risk downplaying our differences. If we do that, people may have an image in their mind of who a ‘disabled person’ is – perhaps someone with a permanent physical or sensory impairment. I am concerned about the many people who live with pain, fatigue, severe confusion, depression, the most significant learning disabilities and autism and also other challenges from homelessness to alcohol or drug problems.

Disabled people are great contributors to our society – for instance, are twice as likely to be informal carers as non-disabled people – but we cannot assume that there is just a minor barrier to remove and full participation will flow.

People who just need straightforward adjustments can work and contribute if they have the right support. A big “if”, of course. But people living with major pain, fatigue or confusion face far greater challenges. They may not be able to work (either temporarily or permanently), or only be able to with intensive individualised support and major adjustments (for instance, annualised hours – so you can work when you are able to and not when your condition is bad – an arrangement that can work for some types of work, and could be expanded to suit people with fluctuating conditions). 

Millions of people of course have this experience of being unable to do much short-term: people who are laid up in bed for a week with flu or laid up in hospital for a fortnight after an accident. But if you are living long-term with a health condition, you may need care and support long-term; and face challenges in being able to contribute fully.

I would like to see greater recognition of the fact that there is a group of disabled people who will need long-term care and support; and will need intensive, and sometimes expensive, support to be able to make choices and participate in society. Someone with significant dementia, for instance, can make choices about important day to day issues if offered options in creative ways (not necessarily through language).

Next, I said that Disability Rights UK doesn’t want to see the debate framed in terms of “barriers” either. There is something negative and disempowering about the term even though it is used with the best of intentions to highlight the multitude and magnitude of the problems that disabled people face everywhere they turn: on transport, at work, in education and at leisure.

It's true that disabled people have had rights under the Disability Discrimination Act of 1995, which are now under the Equalities Act 2010, which are meant to have swept away the barriers created by employers and others. Not that this has happened across the board, of course – though thanks to disabled people Britain is more accessible than it was 20 years ago.

But the term "barriers" frames the problem as something for “them”, the employers and providers and others, to deal with and remove for the sake of "us", the disabled people. Instead of thinking in this traditional way, we could also think in new creative ways about how to deal with the barriers ourselves. That fits in with the discourse about independent living and personal control.

I’ll give two examples, one from history and one about disability. The Maginot Line was a huge defensive barrier built by the French on the border with Germany to stop future invasions. But when World War II came, the Germans simply went around it.

The disability example is somebody with a visual impairment who can't read everyday printed material. Rather than requiring a public service provider to give them information in large print or Braille, for example, they could influence the provider to ensure their website is accessible (sadly some websites still aren’t) and then use text-to-speech software so that they could listen to all of the material themselves. That way, they've both solved the problem themselves and influenced change in a provider, they've empowered themselves and maybe they've found a creative solution that can help other people as well. This approach depends on thinking up creative solutions and on turning barriers into opportunities. It is easily said and hard to do, because creative thinking is sometimes in short supply.

The third point I made was in response to the outline from Kate Green, the Shadow Spokesperson for Disabled People, about Labour's plans to change the Social Security system for the better as Labour bids to win the 2015 election. She talked about reforming the work capability assessment among other such things. It all sounded potentially pointless to me given that Ed Balls has declared that Labour would not reverse any of the Coalition's austerity cuts and has agreed with the welfare cap that George Osborne proposed in his latest Budget. This is a limit on the amount that can be spent on benefits for working age people, set at £119 billion in 2015/2016.

What it means is that money spent on, say, improving the work capability assessment - which would help disabled people - means money not spent on some other group, children, say, who are equally deserving. Whether one political party would be able to make the £119 billion work harder and smarter than others is one on which the jury is out.

I'll end with a comment pertinent to the Cabinet reshuffle news that the role of Minister for Disabled People has gone to Mark Harper.  The disability campaigner and blogger, Sue Marsh, said that the government always places ministers for disabled people in the DWP. Why? Because the government thinks that disability is a work issue and a benefits issue rather than anything else.

This agenda is shared by all three main parties and shows how politicians as a group view disabled people. Instead, she argued, why isn't disability seen as a citizenship issue? There could be a disabled people's minister in a central department like the Cabinet Office, so disability can be addressed in the Department of Transport or Education or anywhere else where disability is an issue.

Robbie Spence is Disability Rights UK’s trainer and an adviser on benefits issues.
Robbie Spence is Disability Rights UK’s trainer and an adviser on benefits issues.

Wednesday, 2 July 2014


The sun might be shining, well most days anyway, but prospects are not looking too bright in relation to disabled people being able to participate in society as equal citizens – the meaning of independent living. For many of us the skies are grey and the outlook is stormy what with the shambles that is characterising the introduction of the new Personal Independence Payment, the Work Capability Assessment obstacle course, Access to Work which is anything but even if you do manage to find employment, continued pressure on NHS resources, a social care system which according to the Local Government Association is facing ‘financial ruin’, and the closure of the Independent Living Fund.

So what to do?

We can protest.  We can call for cuts to be reversed, we can point out how dysfunctional some DWP programmes are becoming, we can call for increased resources for the NHS and social care and, yes, we can call for the ILF not to be closed. It makes far more sense to me to be putting resources into people living, and living well, rather than resourcing the replacement of Trident.  But these things on their own are not going to bring about independent living.

Take the NHS and social care which would undoubtedly benefit from more resources.  The question is what would they spend those resources on?  Experience tends to suggest that the biggest barrier to our emancipation and independent living are cultural attitudes – no no disabled people you cannot possibly control your own lives and have choice!  Won’t more resources on their own just serve to reassert that culture because there will be no financial incentive to question it?

Take the ILF.  Great, so it stays open but what happens then?  Whilst the ILF has benefited many disabled people, claims that it has been at the forefront of independent living are a little exaggerated.  It is of some interest that at the start of the transfer process to local authorities 60% of ILF recipients didn’t even have a personal budget let alone a direct payment.  It’s only now, in the run up to closure, that the ILF has relented and said that you can spend some of your funding on meeting support needs other than personal care.  It is because the ILF is closing that its budget has not been cut.  You can bet that if it stayed open cuts would follow.

2014 is a significant year being the 30th anniversary of disabled people employing their own personal assistants to live independently in the community.  People are rightly concerned that in today’s world of austerity we are in grave danger of losing all the gains we have made during those 30 years.  If we are going to stop that happening then I think we need to do more than just call for increased resources or for the ILF to stay open.  We need a new vision for independent living that tells people what independent living really is, that is relevant to all people of impairment and long term health conditions and their families, and is achievable.

What would this new vision look like? 

There is much to commend what Simon Stevens, long time disabled activist, has to say in his recently posted discussion paper.  He says what we need is a single integrated system that would assess people’s needs and allocate assistance and support based on the outcomes people could achieve in their communities and contribute to society.
It makes sense to reduce the number of funding streams that disabled people have to access or, at the very least, get them working together so that disabled people have everything in the one budget as has proved to be so successful in the Right to Control trailblazer areas.

Another important feature of this vision must be peer support – disabled people advising and supporting other disabled people through the benefit of shared experience. For this to happen we need a strong network of our organisations.
A new vision must be underpinned by co-production - disabled people involved throughout as equal partners in initiating ideas, designing and delivering ways to meet our support needs and deciding how much progress has been made to realising independent living.

Above all I think a new vision needs to be inclusive of all disabled people, impairments and experiences.  It is the statutory agencies that pigeon hole us into different groups and encourage us to fight over the crumbs of an ever dwindling cake.  We don’t have to that.  We can unite around a vision applicable to all.

Disability Rights UK is holding a conference at the Oval in London on 18th July to map out a new vision for independent living.  Come and have your say or if you are unable to be physically present, join us on social media.  Contract Karen Earl for details:  

Sue Bott, Director of Policy and Development at Disability Rights UK

Monday, 31 March 2014

Creating a step change in disabled people’s employment

Successive governments have talked the talk of employment opportunities for disabled people, written yards of strategy and policy, consulted again and again and set up programmes from Pathways to Work to Work Choice.

Yet for all this effort, in 2014 less than half of disabled people are in paid employment and the figures are far worse for people with multiple impairments, mental health conditions or learning disabilities and in some minority ethnic groups and some localities. Disabled people are 23% less likely to be in work than non-disabled people with the same qualifications (the co-called ‘disability employment penalty’). Those who are in work are over-represented in occupations that are shrinking (eg junior administrative, manual), under-represented in occupations set to expand (eg professional and managerial) and earn less than their non-disabled peers.

What is to be done?

Some countries facing similar challenges are considering radical action. In the US, regulations coming into force in March 2014 require about 40,000 companies contracted by the federal government to ask employees whether they have a disability: those that do not employ at least 7% disabled workers, or cannot prove they are taking steps to achieve that goal, could face penalties potentially including loss of contracts (click here to read The Wall Street Journal article).   Last year the Australian Disability Discrimination Commissioner Graeme Innes issued a challenge to major store Myers (a household name akin to Marks and Spencer), after they made a discriminatory comment on disability: he asked them to commit to achieving a 10% target of disabled employees by 2015 (click here to read more). 

In Britain we are rightly wary of quotas – they didn’t work after the 2nd world war (they were simply ignored), in countries like Germany that issued fines for non-compliance some companies just paid the fines rather than give more disabled people jobs, and anyway disabled people want jobs on merit.

But there are ways of incentivising employers to improve opportunities for disabled people, using both carrot and stick – without rigid quotas.      

We already have ‘employer ownership of skills’ which puts employers in the lead in skilling people up to meet the requirements of the future labour market, receiving some public money which they match. Why not extend that principle to employment and development of disabled employees specifically? If employers had ownership of the problem and the means to create solutions, we could see a step change. And, as in America, both government and businesses could use their supply chains to drive up the rate of employment of disabled people. During the Olympics and Paralympics, locog required their contractors to employ disabled people and they themselves successfully took action to ensure that large numbers of disabled people became volunteer ‘games makers’. The argument that ‘they didn’t apply’ does not hold up: we know that proactive approaches bring results. Central and local government and large companies could take a lead together in driving change through the economic power of procurement.

The centre of this strategy is transparency – letting us all know what the disability employment rate is in different organisations, at different levels and business areas. Companies could promote their practices on anything from mental health at work to adjustments for people on the autistic spectrum. This would help attract the best talent: disabled people want to know where is best to work, and young people generally increasingly ask at interview about corporate responsibility. 

There are routine objections to all this of course, notably that people will not want to say whether or not they are disabled for fear of being passed over for promotion or otherwise discriminated against. Rather than accept this, companies can be clear on why they are asking, vigorous in feeding back how the information is used to improve opportunities, and committed through all their leaders and managers to cultures in which the full range of human experience is valued. For the individual, shedding a big ‘secret’ in a safe environment improves well-being and productivity, so it’s a goal worth pursuing.

Culture and practices will change through serious levers and incentives  - not just worthy disability confidence communications campaigns.

And then we need to reform the support available to individuals. With Neil Crowther in 2013 I set out a vision to enable the individual to take control of their own employment support, working with the employer to create bespoke solutions (click here to read more). Our survey of over 500 disabled people found three quarters wanted to know what resources were available and to be able to decide how best to use them. People reported huge frustration at mandatory one size fits all approaches like CV writing courses when their particular challenge was a fluctuating condition for which they needed tailored support.

Let’s face it – the large programmes contracted by DWP under different Governments have not worked for disabled people.  The National Audit Office concluded that Pathways to Work had not been a good use of public money. And as the Centre for Social and Economic Inclusion put it in March 2014, there are no significant signs of increasing performance by the Work Programme; it could (they say) have been expected that with the increase in economic growth that performance would pick up, but it has not; and jobs for ESA claimants remain significantly below expectations – ‘the single largest problem for the Work Programme’.   

The way forward is personalised employment support so people can find the support that works for them; with providers offering evidence based approaches that support people to pursue their aspirations for decent careers through rapid job search, ‘earning and learning’ ie skills development in line with the local labour market, and flexible and where necessary ongoing support for both job seeker/employee and employer. A menu of support including a reformed and expanded Access to Work programme, and more intensive specialist support, would be a good start. 

At present, much employment support for disabled people – both nationally and locally commissioned – is not evidence based.

A step change is possible, which would see disabled people securing apprenticeships, traineeships, jobs and promotions. It requires radicalism. Tweaking what we have won’t do it – that has been tried and failed. Decision makers should be bold, create new incentives for employers and use public money on personalised, evidence based support for individuals.

We don’t want in 2024 to be looking back on another wasted opportunity. 

This blog, written by Liz Sayce, was originally posted on the National Development Team for Inclusion's (NDTi) website. Liz Sayce is Chief Executive of Disability Rights UK, the UK’s leading pan-disability organisation. She is a Commissioner at the UK Commission for Employment and Skills and has recently led an Independent Review into disability employment programmes. 

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