Thursday, 30 July 2015

Get Yourself Active Launch - a project personal best

It is one month since we launched our new Sport England funded Get Yourself Active project and as well as feeling a huge sense of relief that the event went smoothly with no glitches, I felt a little sad when it was all over. However, the launch event was not just about having a nice lunch and telling people WE’RE HERE. It was a chance for us to tell Get Yourself Active friends (stakeholders sounds so formal!) what we need from them to make this project work. So although the launch is over, there is still a real buzz and we intend to sustain this excitement throughout the project.

What I found so encouraging was simply how many people turned up when they said they would. This says to me that there is a real sense of excitement about the project across health, social care and sport. The launch was a rare opportunity for people from such a wide range of professional backgrounds and disciplines to think about and talk through how we improve disabled people’s health, wellbeing and independence through physical activity and sport. It was even rarer to be having this discussion in the context of personalisation, the Care Act and the NHS vision for community based services as espoused in the Five Year Forward View.

We had some inspiring presentations from our partners and ‘friends’, these can be found on our launch event page – please take a look. Then over to our discussion groups who put the world to rights and made many useful comments and suggestions about what is needed to make this project a success...

Someone suggested that we need to promote meaningful involvement of disabled people if Get Yourself Active is to be a success - ‘Disabled people need to be upskilled to know how to navigate through the process and be provided with the required information in the right way.’ If more disabled people are involved in providing these services we will have a better chance of good quality service design.

We had a great response from friends in the sport sector too – ‘Sport providers will jump all over this – they’ve been waiting to find out how they can link in with people on PBs.’

We were also interested in identifying the many challenges we face including tight local authority budgets, the infancy of such an approach in health and a lack of confidence from sports providers to engage with disabled people meaningfully. So it is clear there is lots to do which means it is vital that friends of the project help us to achieve our outcomes.

It is important to remember why we are delivering this project, getting people on board is a means to an end. Get Yourself Active is about better physical activity and sport options for people with physical disabilities, learning difficulties, mental health issues, sensory impairments those with Autism and older people, that’s what we are passionate about.

Please get in contact with us if you have examples or knowledge of how personal budgets have been used for physical activity or sport by emailing me at or tweeting us @GetYrselfActive using our hashtag #whatsyourpb

Friday, 17 July 2015

Whatever happened to disability equality?

On Tuesday I gave evidence to a House of Lords Select Committee scrutinising the effectiveness of the Equality Act for disabled people: 

Hear Liz give evidence 

I said that in the 2000s disabled people felt some hope because of the civil rights we had won:
  • The law no longer (like the original race and gender laws) just gave redress ‘after the event’: it required organisations to positively promote disability equality – to treat people differently, in order to get equal outcomes
Lights Camera Action
  •  The law gradually improved: it covered more areas of life (eg schools, colleges) and more people (with better coverage of those with MS, cancer, depression)
  • Some progressive changes continued into the Equality Act 2010: for instance, a fantastic campaign by National AIDS Trust, Rethink, Macmillan and Radar led to a bar on employers asking questions on health and disability before job offer (except where necessary eg to make adjustments in recruitment) – to help root out recruitment discrimination.

But I added that this hope has declined, as we have seen less promotion of the Public Sector Equality Duty and huge challenges for individuals to get redress. Our information lines hear from people all the time experiencing real unfairness at work or from services – who just can’t get good advice or legal support when they need it.

We need leadership from right across Government and from the Equality and Human Rights Commission (EHRC) and major public and private organisations (some of which do great things – but others do nothing or worse). Enforcing and promoting the law can’t be left to the individuals facing discrimination: it’s organisations with power that need to act.

And we need a strong narrative on our equality: not discussions of disabled people as if we are either completely self-sufficient or need ‘looking after’ but a commitment to the universal design, adjustments and supports that will enable Britain’s 12 million disabled people to achieve equality.

We have until September to put in additional written evidence to the Lords Committee on the Equality Act. If you have views on how the Act is or is not working in practice, and experiences to share, just let us know at 

On Wednesday I attended an EHRC event and pressed them to address disability equality effectively in their forthcoming report ‘Is Britain Fairer?’ Last time, they reported a big pay gap between disabled and non-disabled people and then said the priorities were closing the gender pay gap; and closing the employment gap between disabled and non-disabled people. This suggests that women deserve decent pay and promotion; whereas disabled people should settle for any job, no matter how badly paid and insecure. Not exactly a message of fairness. I and others also pushed them to cover vital issues like school exclusions of disabled people, institutionalisation and co-ercion, life expectancy, accessibility and more. We will see if they take note. It should be out in the Autumn.

Also on Wednesday I met (with others) Justin Tomlinson, Minister for Disabled People. We raised our strong concerns about the proposal to cut ESA for new people in the Work Related Activity Group after 2017; and discussed the Government’s plan to halve the disability employment gap, and how to do it: communications campaigns like Disability Confident don’t in themselves change employer behaviours or give employers and disabled people the support they need.

In America, there is a campaign for a Community Integration Act as a civil right
Campaign for a Community Integration Act as a civil right

Meanwhile in America, there is a campaign for a Community Integration Act as a civil right – to remove the bias towards institutional care. A source of inspiration for us?

Tuesday, 9 June 2015

Should we adopt Australian policy ideas?

I’ve just returned from leave in Australia – and I took to wondering about the fact that in the UK we are often entreated to look to particular countries, like Australia and the US, to inform our own policies. Should we? If so why and how?

We need to be selective about what we import and adapt – and note what ideas we are exporting as well. When I left the UK, there was much talk of adopting the Australian points-based system for immigration; meanwhile the Australians were busy discussing whether to adopt UK policy on removing citizenship from people who have gone to fight for Islamic State.

Australia is a fantastic country: beautiful, friendly, innovative.

It has people prepared to make statements of deep humanity in the face of anxieties about migration:

Real Australians say welcome

 Not to mention amazing landscapes and wildlife:

Don't feed the Ibis sign
But whether it is at ease with its diversity, and universally committed to equality, may be open to question. While I’ve been there, 2 debates have raged, over the government’s policy of closing some remote (indigenous Australian) towns; and over gay marriage. And disability policy and conversations about it are decidedly mixed (see below).

One town has already been razed to the ground, its aboriginal population forcibly evicted. The proposition is simply to shut some remote towns down because it is too expensive to provide basic services to them (water, education etc), and because some are badly affected by social problems like alcoholism and child abuse. Set this policy against history: aboriginal people were forcibly ‘dispersed’ by 19th Century British colonialists; often dispersal was a euphemism for massacre - indeed an artwork by Fiona Foley in Brisbane’s Art Gallery consists of the huge word ‘DISPERSED’ with the ‘D’ made entirely of bullets. Major cities were segregated: in Perth, for instance, no Aborigines were allowed in the city centre (except to carry out their work) until 1954. In October 1954 the main Aboriginal club held a ball in Perth Town Hall, to celebrate being allowed back on to their (own, original) home land, the place of the Wadjuk Noongar home fires. Aboriginal people were denied the right to vote, the right even to give evidence in trials (making a mockery of justice); and the first Aboriginal was granted Australian citizenship in 1957.

Closing communities reeks of dispersing the dispersed, dispossessing the dispossessed. The results of dispossession are evident on the streets. In Broome, Western Australia, I saw the liquor stores that will only sell to people with cars, to prevent homeless aboriginal people buying alcohol. Some have taken to taxis.

Redressing the long-term impact of dispossession is hugely challenging. There is great work in train by Aboriginal-led organisations and elders, fighting for land rights, developing new opportunities; and by some NGOs, building on communities’ assets, not defining them as ‘social problems’. Some companies are investing in business development led by aboriginal people; and former Premier Kevin Rudd did issue a formal apology to the Aboriginal people as his first act in office. But to see Aboriginal leaders on TV stating that they have not been consulted about planned closures of communities suggests a lack of process to attain real co-produced solutions.

And then there was gay rights. It was perhaps unfortunate that an Aide to PM Tony Abbott apparently asked the Ambassador to France not to have his (male) partner present on the airport tarmac to greet the PM. The Ambassador immediately threatened to resign. And Abbott, who personally opposes gay marriage, was left distancing himself from his Aide’s decisions. This may have been based simply on symmetry of partners demanded by protocol – Abbott’s wife was absent – but when Abbott was faced, in the aftermath of Ireland’s popular vote for equal marriage, with his own sister stating her wish to marry her (female) partner on prime time TV, he issued no ringing endorsement of her position. Meanwhile activists created badges like ‘Alabama has gay marriage; we are behind Alabama’.

There is much good work in Australia on equality; but it would be reasonable to say it is not fully, publicly at ease with its history or with diversity.

So what of disability policy?

The biggest show in town is the National Disability Insurance Scheme (NDIS) which is progressively phasing in the equivalent of personal budgets for social care across the country. It attracts cross-party support; and funding for it has been safeguarded in the face of cuts elsewhere. And the services on offer are free! There is no distinction between health services being free at the point of delivery and social care being means-tested. Here IS a policy idea worth exploring in England and the UK: after all, what better way of integrating health and social care, the holy grail of policy in the nations of the UK, than to get rid of the border disputes between the two and the attempts to shift costs to the individual?   

NDIS is not perfect. There is a gap between the numbers needing support and numbers eligible for NDIS (although seemingly a much smaller gap than in the UK); more specifically you have to have a continuing, permanent disability – which people are busy defining to include psychiatric and other fluctuating conditions, but clearly the definition is problematic (why should you have to prove your impairment is permanent when you need support now?); Australia generally is behind the UK in personalisation (congregate living arrangements, and block contracts for day centres, are still often the norm); and there is worry in mental health circles that NDIS seems to offer higher prices for professional interventions than for peer support. But overall the evidence suggests it is set to significantly increase opportunities for participation for Australia’s disabled people.

And Australia has other good initiatives, like its Job Access programme, that gives free, detailed information to disabled employees and employers, with thousands of web pages on the accommodations and systemic approaches that have worked in practice, backed by free telephone advice.

But at the same time, the 2014-15 budget brought in curbs on the main disability benefit (the disability pension) – so arguably the state gave with one hand, and took away with the other. Anyone under 35 who could work more than 8 hours had to undertake compulsory activities, like ‘work for the dole’, or face sanctions which at worst could mean 8 weeks with no payment.

Changes were justified in terms of rising numbers of claimants – but the National Welfare Rights Network commented that the rise was broadly in line with population growth – ie not a rise in percentage terms.

And as for the May 2015 budget, the National Centre for Social and Economic Modelling concluded that 90% of the poorest families would be worse off as a result.

And then there is the national conversation on disability benefits. As the population watched ‘Struggle Street’ (a direct equivalent of Benefits Street) and debated whether it offered a demeaning portrayal of ‘social breakdown’, the Prime Minister moved from just talking about ‘lifters and leaners’ (the equivalent of strivers and skivers) to announcing a police-led initiative to stop benefit fraud. As the National Welfare Rights Network put it, inflammatory media language like ‘Welfare Cops on the Beat’ was unhelpful.

Sound familiar?

So: whilst governments learn from each other’s policies and narratives, disability activists need to make our own selections in the interests of full equality and participation of disabled people. And as far as Australia is concerned, we can learn from the free NDIS, from the Job Access programme, from the strategies of our fellow campaigners. As disabled people’s organisations, we can put in place initiatives ourselves, working with partners and learning from international good practice. But we should never simply accept the selected learnings that governments put forward. There are positive and less positive developments in Australia (and in every other country); and we can decide which learning we want to import and adapt – and which to reject.   

Liz Sayce - Chief Executive Officer Disability Rights UK

Thursday, 4 June 2015

Giving birth to purple culture

There is a culture to all politics and at its best the culture of disability politics has been angry, stirring, passionate and liberating but at its worst it has been patronizing, cloying, worthy and dull. The following suggestions are intended to stimulate the growth of a new exhilarating period of disabled people performing in mainstream arts. A purple period.

Purple is a colour advocated by the Broken of Britain campaign (Pat’s petition) as the colour of disabled people’s cause. They argued that it represented a way of enhancing the status of disabled people and I myself applied it to the spending power of disabled people – the purple pound. The power of symbolism and imagery has been illustrated by the way this phrase has entered into the language of Government ministers. Of course some will question the value of this but it is quoted here simply to highlight that culture is an important vehicle for the acceptance of ideas and all political movements have used this to their own advantage.

Possibly the best example of the power of cultural shifts to normalize previously disadvantaged groups position in society is provided by the gay rights movement. Their political progress from the ending of the criminalization of homosexuality in 1965 to the legalization of civil partnership marriages in church by a conservative led government in less than fifty years is a stunning achievement. The documentary film “How to stop a plague” records the history of gay rights groups’ efforts to achieve access to affordable treatments for HIV/Aids. The film covers the period of activism and challenge to an uncaring political, medical and religious establishment, the emergence of a DIY culture of recording self-help and even the mass attendance at funerals of the activists who had died before treatments became available. However as much as any of these vital elements of a sustained and successful campaign were the manifestations of gay culture – the music, fashion, dance and parades that grew from the margins and entered the mainstream and stayed there. Good As You – Gay became as natural as any other choice and the cultural shift was important to making it possible.

Gay people, black people, women have all found their voice and so now must disabled people remake mainstream culture too. Disability Rights UK are interested in a festival of ideas of what this making might look like. There is a lot happening already and so I thought I would offer a poster of purple events that can help us to define the current landscape and help to see what hills still have to be climbed for pastures new.

Does e-sports offer a level playing field?

New theological thinking on disability and the parables of the bible. To find better stories do we need to look again at the greatest story ever told?
See Metzger at 

Since 2010 there have been mainstream films featuring true stories of people with autism, motor neurone disease,polio, dementia and mental health - is film following or leading the challenge to stigma? 

Is rap accessible? Mark Humphries aka Kray-z Legz on account of his spina bifida might be the tip of an iceberg of disabled people composing rap in their bedrooms and giving expression to their experience.

Is it time for comedy to be more subversive? Francesca Martinez ask “What the **** is Normal?” on her latest tour.   
Purple culture will, like Francesca Martinez, challenge what is considered normal and what has previously been considered the limits of democracy or democratic expression. It will affirm life experiences, challenge denial of opportunity whether by politicians or anyone else and prove to be extremely resilient. Going purple will no longer be about how non-disabled people produce prose but how disabled people define new interpretations of how all people come to experience society. Once this happens politics too will have to change.
Philip J Connolly
Policy and Development Manager

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.  
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