More than £1 million for 10 new research projects led by disabled people
Ten new projects across the UK have received between £40,000 and £150,000 of National Lottery funding each, to explore how disabled people can live as full citizens in our society and what changes and support will make that happen in practice.
Over £1.15 million worth of funding has been granted as part of the DRILL (Disability Research on Independent Living and Learning) programme, a £5 million scheme led by disabled people and funded by the Big Lottery Fund, the largest funder of community activity in the UK.
 Each research or pilot project will be led by disabled people or people with long term health conditions; they will be developing approaches and questions, working alongside academics and policy makers. Disabled people who often struggle to have their voices heard will be shaping research – such as people living with dementia, learning disabilities and mental health issues.
Grants were approved by the DRILL Central Research Committee, which is chaired by Professor Tom Shakespeare. He said:
“I welcome this next batch of timely, targeted, transformative projects funded by DRILL. From developing new social care models to improving access to the justice system for people who are deaf, these projects address some of the key barriers which affect disabled people’s ability to live independently across the UK.”
The 10 successful projects will be led by:
England
ALLFIE (The Alliance for Inclusive Education)
De Montford University
NDTI (National Development Team for Inclusion)
Cheshire Centre for Independent Living
University of Worcester
Northern Ireland
British Deaf Association (Northern Ireland)
Positive Futures
Scotland
Edinburgh Centre for Research on the Experience of Dementia
Wales
Barod
Launched in 2015, the DRILL programme is fully funded by National Lottery funding through the Big Lottery Fund and delivered by Disability Rights UK, Disability Action Northern Ireland, Inclusion Scotland and Disability Wales. DRILL is funding more than 30 research and pilot projects over a five-year period, all led by disabled people.
For further information on the projects visit www.drilluk.org.uk
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Blog Post: DRILL – The Next Steps
Being involved in a project like DRILL is both exhilarating and frustrating in almost equal measure. Recently the exhilaration has been at the forefront, partly because this month we move another step down the road by announcing over £1 million for another ten research and pilot projects across the UK which will help support disabled people to live independently.
The frustration is inevitable when you look at the environment organisations like ours (Disability Rights UK, Disability Wales, Inclusion Scotland and Disability Action Northern Ireland) operate in.
Disabled people’s organisations struggling to stay afloat, disabled people battling for benefits and services and a new secretary of state with a questionable track record when it comes to disability rights.
Part of my frustration comes from us having to decide which great projects don’t get the funding from DRILL they applied for – and it’s safe to say that frustration was shared by the group of disabled experts who made the final funding decisions. We needed a mix of projects which offered up a decent cross-section of geography, impairments and subject areas, and that meant that some really fantastic ideas didn’t make it over the finish line. We are sad about that and hope that some of those may find funding streams from other sources.
On the flip side, it’s exhilarating to look at the depth and richness of the projects which have been successful in their applications. People have come to the DRILL project armed with passion and experience and commitment and creativity. From researching accessible toilets (Scotland) to finding ways for self advocates to earn money (Wales) through to getting better access to the justice system for deaf people (Northern Ireland) and finding out why we don’t have more disabled foster carers when the fostering system has a huge gap to fill (England); and that’s just four of the ten successful that will get underway this year. If you want to find out more about the projects DRILL is funding, do go to the project page, which has all the details.
The £1 million or so for these new projects also marks a change in emphasis for DRILL. Up to now, much of the focus for us has been on scrutinising projects and working with organisations to help them develop their funding bids. In 2018, our focus moves to the myriad of projects and research which are underway.
We’ll see some of our early projects finish and produce resources and findings which will help support disabled people to be more independent. We’ll also see some interim results from other projects which will help us build our knowledge and understanding of the barriers disabled people face and how they can be challenged.
There are exciting times ahead!
Kamran Mallick
Chief executive
Disability Rights UK
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Blog Post: Humare Avaaz – Our Voice (Part 1)
Humare Avaaz – our voice. We thought it was a great name for community research into the barriers to independent living faced by disabled women in London’s Asian Communities. And so it has proved to be. However … It’s funny how you underestimate or don’t anticipate things!
The Asian People’s Disability Alliance (APDA for short) is a true DDPO. It was founded on the principle of co-production, or whatever it was called 25 years ago. We have an experienced project manager with an academic background and a well-known and experienced lead researcher, an expert in the field. What could go wrong? Well nothing actually went wrong, in fact the reverse, but boy, what a learning curve. Talk about tales of the unexpected.
‘This should all be reasonably straightforward’, said he. The methodology was simple and tried and tested. The implementation plan was elegant and the budget was sufficient. However, none of us had been involved in co-produced community-research in which the co-researchers would be disabled, few have is our understanding. Perhaps we should have seen it coming, financially we had anticipated appropriate support costs but the best laid plans etc.
It’s just the way it is. It has proved far more time-consuming than anticipated to arrange training, focus groups and interviews etc. only to have to change plans at the last moment for perfectly good reasons. Oh for the simplicity of quantitative research! But that would achieve very little for Humare Avaaz.
We also underestimated the interest our own service users would bring to the initial focus groups, designed to set the agenda. Interest isn’t really the right term; more a release of pent up frustration at not having been listened to for, in some cases, decades. Humare Avaaz really is a great, even emotive, name.
A carefully prepared-for first focus group, prepared for in the sense of structuring it around reasonably expected responses – we’ve doing this for a while after all – not in the sense of the antithesis of co-production, was ‘interesting’. Money spent on an iPad and a note-taking app with a synchronised recording facility absolutely saved the day. We naively thought that reasonable meeting protocol would apply! Just as well all present were happy for the groups to be conducted in English! On reflection, why would we assume that that the hitherto voiceless would follow the rules of those easily heard! Such a meeting was a complete novelty.
Just when we thought we had sorted out initial teething problems, one of our original partners pulled out – they had lost their core grant funding. This delayed the steering group but was fortunately easily solved with the proactive support of Disability Rights UK.
So, what is our co-produced meaning of ‘independent living’? What are the barriers faced? It is our voice after all. Next time …
Stay tuned for part two of the blog in the New Year!
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Blog Post: Leading Disability Research
Hello, my name is Keith Lynch and I am the Vice-Chair person of People First (Scotland) and I want to tell you about the research we did with support from DRILL.
Before I do that I want to tell you a little bit about People First. Our organisation is a user-led learning disabled person’s organisation. This means that all our members and all our Directors have learning disabilities. We hire the staff that support us to do the work we chose to do.
The title of our research project was ‘Does it matter? Decision-making by people with learning disabilities’.
Since the United Nations Convention on the Rights of Persons with Disabilities there has been a lot of attention on how people with learning disabilities make decisions.
The UN Convention says that no person with a disability should have their right to make decisions taken away. We agree with this. In Scotland, more and more people with learning disabilities are having their right to make decisions taken away from them by Guardianship orders.
Some of my former colleagues who were Directors on the People First Board have been put under Guardianship orders, and are no longer allowed to make decisions for themselves.
The UN Committee on the Rights of Persons with Disabilities has said that Guardianships should be replaced by supported decision-making.
We wanted to know more about decision-making by people with learning disabilities because we want to persuade the Scottish Government to change their laws. We also wanted to know what kind of support helps people to make their own decisions.
To do the research we partnered with researchers from a company called Animate Consulting. They helped us by telling us how to do research and the different ways we could do the research. They also did most of the reading and wrote the final report for us.
I was involved as a peer researcher and also sat on the steering group. The steering group met with the researchers once a month to talk about the research. We made all the big decisions that had to do with the research like coming up with the research questions, making sure we had enough people to take part, and commenting on the report draft by the researchers.
As a peer researcher I was supported to facilitate focus groups of members. I also did a couple of one-to-one interviews. For me this was a great part of the research. I enjoyed meeting members that I had not met before. It was also very interesting to hear how people felt about making decisions. We found that making decisions matters very much to people with learning disabilities. Most people said that making their own decisions helped them feel confident and in control.
I think it’s very important that we have been able to share the views of people with learning disabilities in our report and show what they think good support looks like. I hope you have enjoyed reading about my experience of being involved in the DRILL research.
If you want to know more about the work we do you can have a look at our website www.peoplefirstscotland.org/news/.
We are delighted to be the first DRILL project to publish our report. This research has been important to us for many reasons and especially because it highlights that there should be ‘nothing about us, without us’.
Keith Lynch,
Vice-Chair People First (Scotland)
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Blog Post: DRILL through history, beyond the present for the future
Tony O’Reilly
Taking a look at the world today it seems that the equality agenda, has taken a backward step. Brexit and the quest for the leadership of American democracy has been characterised by many as a global manifestation of a backlash against progressive forces that sought to promote equality for all. We are left simply to reflect on the apathy or cacophony of angry voices as a guide in choosing moral leadership to uphold the nobility of human rights and the future of democracy. Gone in an instance is the history of struggle and endurance that must inform and shape progressive forces in our future. It is in this history that lies our desire to look beyond the dark clouds of our history, from the politics of superficial opposition to the politics of inclusion.
Such progressive forces perhaps, through the lens of rose tinted glasses of a dreamer, were often rooted in the social conscience of the civil rights movements so prevalent it appears in the Europe and United States of the 1960s. In the idealism of the young Mikhail Sergeyevich Gorbachev, my hero of the Russian Revolution of the 1980s and 1990s (not the one of 1917). His policies of glasnost (“openness”) and perestroika (“restructuring”) gave so much hope for the flowering of human rights…..
When DRILL was first conceived by the four disability organisations involved and funded by the National Lottery, they didn’t imagine it would measure up to advancing the human rights of disabled people as other movements had progressed in the 1960’s. It will be a quiet revolution and one where information and knowledge alone will be mightier than any single street protest that preceded it. As for my heroes, in this wider modern and new revolution, it has to be the people who conceived this ambitious undertaking, despite the global doom and gloom, they have chosen to continue this struggle fighting with all their might for what is right; no matter the odds or the weight of history. My views, your views, our views, do matter. If DRILL says anything, it proclaims precisely that.
Two things are certain. You and me when we work in solidarity with each other: we become an us. Together we make a difference. Alone, without the other disabled and non- disabled, we our drowned by popularism – which by definition excludes the minority, no matter how reasonable or compassionate our voice. Secondly, by the very nature of DRILL, and indeed our movement we will always challenge popularism born of ignorance, fear and despair. The struggle for equality and human rights and the desire for knowledge and enlightenment is exactly that. It is keeping faith in the good, in the struggle for a better tomorrow, bound neither by the past or the present, by a hard or soft Brexit or dare we say any resident in the White House.
This is an edited extract. Tony’s full blog can be viewed here – June – Tony O’Reilly Blog
Tony O’Reilly is a member of the North West Forum of People with Disabilities and the Northern Ireland DRILL National Advisory Group. He has been an activist in the human rights movement for over 25 years. He is a dreamer and a doer.
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Blog Post – Empowerment matters: An evaluation of the Dementia NI service
People with dementia often report losing confidence following a diagnosis and can sometimes experience feeling marginalised and stigmatised in society.
Dementia NI was established in January 2015 by five individuals with dementia, to support and enable others with dementia to have their voices heard.
Since launching in 2015, members have been involved in activities including public speaking, engaging with policy makers and service providers in Northern Ireland, raising awareness and challenging stigma and assumptions about dementia.
But what exactly empowers people with dementia and how can this learning about empowerment be translated to other contexts, for different individuals and in different circumstances? These are questions that will be addressed by our exciting new research project between Queen’s University Belfast and Dementia NI, funded by the DRILL programme.
We are delighted to be partnering with Dementia NI as part of an evaluation of the organisation’s empowerment programmes. Informed by the principles of realist research this evaluation will be co-produced by people with dementia to help understand what works well about the programmes, for who and in which situations. This will include interviews, observations and questionnaires with members, volunteers and staff. The knowledge developed through the evaluation will support current and future members of Dementia NI as they continue to develop empowerment groups across Northern Ireland. It is expected that recommendations will also be applicable more generally to empowerment of people living with other disabilities.
We are excited to be involved in a project that focuses on empowering people to live well with dementia. This research project will centre on listening to and learning from the voices of people with dementia. In the words of Dementia NI members:
“We want people to come and ask us, not make assumptions about and decisions for us.” (Dementia NI)
Dr Paul Best is a lecturer in Social Work at Queen’s University Belfast and will be leading this project in collaboration with Dementia NI.
Tara Collins is the programme manager of Dementia NI.
Mabel Stevenson is a research assistant at Queen’s University Belfast on this project.
Dementia NI – www.dementiani.org
Email: [email protected]
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Blog Post- Introducing a research project ‘Young People and friendships: what matters to us?’
38% of disabled young people feel lonely most days (Sense, 2016). It almost rolls off the tongue, ‘lonely most days’ as a glib, catch-all phase. But if we properly listen to disabled young people, we will become aware of a very stark situation that needs urgent action.
In evaluative research, C.A.R.P. Collaborations has been working with disabled young people who use the Building Bridges project, a community connecting and transition service, in Monmouthshire. These young people have explained exactly what ‘lonely most days’ actually means; through reflection on what life is like now, since they have had support to maintain friendships: ‘I was existing, but now I’m living.’ Having friends means that ‘I’m not alone now. I felt incredibly alone. I started suffering from OCD, anxiety and I had my learning difficulty and I was all alone.’ And loneliness often brings low self-esteem with it: ‘Since joining Building Bridges I realised I was not so bad’.
These descriptions paint a bleak picture of transition experience. But this experience is not shared across all young people. Why is it that most (by no means all) non-disabled young people’s life trajectories lead them to find their path in the world through apprenticeships or further learning, sexual relationships, networks of friendships and a variety of options ahead of them whilst; in various small evaluation and service development assessments that C.A.R.P. Collaborations has undertaken, this blossoming of social life, or indeed participation in the adult world, does not appear to be a common experience for disabled young people. Without certain types of transition support or access to community activities young disabled people often describe themselves as ‘all alone’.
Social life and friendship are often seen as trivial; particularly within the eyes of social researchers who feel there are more weighty problems to investigate. However, re-reading these quotes, we can see that social lives and community participation are crucial; to both wellbeing and identity. But we need to know so much more in order to give the same opportunities and dreams to disabled young people that the majority of non-disabled young people currently have. The DRILL programme has enabled us to do exactly this. We are working across South East Wales to find out what are the patterns of friendship for disabled young people in transition to adulthood? What helps to maintain friendships and what are the attitudinal, organisational and environmental barriers that stop their participation in social life?
But who are the best people to do that investigation? Should a research project rely upon the C.A.R.P. staff team; all of whom are academically trained, non-disabled and aged over 45? We can empathise as individuals and analyse as academics; but to really get it right we need those young people in our research team. They are the people who know this issue, who have so accurately described the experience of friendship and explained the full implications of what ‘lonely most days’ actually means. They are also the people who will know what needs to happen to change in service design to change this bleak social reality. So the research project involves training and mentoring young disabled people to take work placements in researcher roles and work with us to explore these important questions. We are at the early stages of this peer research journey and hope our next blog opportunity will be a video account from a peer researcher colleague.
Vikki Butler is research director within Community Action in Research and Policy (C.A.R.P.) Collaborations, a social business and workers’ co-operative based in Swansea.
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October Blog Post: Wagons Roll!
How many times do you feel genuinely excited by a TV programme? Me neither. But slumped on the sofa after a long day labouring over a luke-warm policy paper, I recently had the great good luck to click on Channel 4’s George Clarke’s Amazing Spaces.
For those who don’t know, George is an architect with a penchant for the quirky. According to the blurb, he explores the extraordinary world of small builds, where people turn tiny spaces into the most incredible places to live, work and play. This programme featured Sam Mildon, a young disabled guy who uses a big powered wheelchair. Sam wanted to go to festivals, explore the world, do stuff he wanted to do – like most people in his age group. He didn’t like or want, and couldn’t afford, an unwieldy production-built accessible mobile home. And as a dedicated conservationist, he wanted to have a vehicle that was as sustainable as possible. So he decided to build his own mobile wagon, and with very little help from George. And it is the most awesome, amazing thing I’ve seen for a very long time. Why?
- It’s user-led design that works: Sam knew what he wanted to build, how it should work and how it shouldn’t work in terms of his personal accessibility requirements. And most importantly, he had total control over the process.
- It’s about self-determination in a very real sense: Sam wanted to fully participate in a lifestyle of his choosing, and knew the only way to do it to his liking was to build his own solution. That’s what I call empowerment.
- It happily integrates inclusive design with sustainability: these two ways of seeing the world are often framed as unrelated, but desperately need linking up, so it’s fantastic to see a tangible example of how they can both work well together – they are complementary, not oppositional.
- It’s been designed, built and part-funded cooperatively: the self-build was a great example of harnessing the power and support of the community – friends and family, of course, but also mates who knew about design and supporters across the globe through crowdfunding.
- It’s really good value for money: the extra costs of disability are well-known, as is the disability premium hiked on to specialist products. Sam showed how a beautiful solution doesn’t cost the earth.
- It looks absolutely brilliant and does the job: accessibility and functionality are often depicted as painted in battleship grey – dull and uninspiring. Sam’s project demonstrated the precise opposite.
All these things made me think of DRILL, as it seems to encapsulate the core idea of what the programme should be all about, but perhaps without the accompanying research jargon.
Something that is genuinely innovative, something that raises aspirations, something that solves a problem elegantly, something that doesn’t break the bank, something that actually works because it’s user-led from the start and harnesses other people’s expertise and is a catalyst for community spirit. And that rarest thing, something that makes you feel warm inside for all the right reasons.
For me, DRILL’s essence is all about participation, and this little project symbolised that idea – not only about participating in community and social life, but on a micro level shifting attitudes about localised economic participation and marrying big ideas like accessibility and sustainability, but in a very demonstrable way. And probably most importantly of all, it made jaded old me genuinely excited.
As researchers, sometimes it helps to look obliquely at non-research related nuggets like Sam’s accessible wagon and daydream a bit, get inspired and make connections. I hope you’ll be able to watch the programme to feel the excitement – and, yes, inspiration – yourself if it’s still available on All 4. If nothing else, it’ll make you grin. And if you want to start envisioning better futures for disabled people, that’s not a bad place to start.
George Clarke’s Amazing Spaces can be viewed here
Graham Findlay is co-chair of the Wales National Advisory Group and a disability equality and inclusive design consultant.
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DRILL Roadshow Reports
The DRILL Programme, through its national partners, has now completed over 18 DRILL Roadshows across Northern Ireland, Scotland, Wales and England. The purpose of which was to determine how research and piloting would contribute most to achieving independent living.
The DRILL Roadshows were based on the principles of co-production involving Disabled People Organisations (DPOs) from across the impairment spectrum, disabled people, academics, policy makers and senior practitioners.
Over 640 people were directly engaged and many more indirectly through social media, with disabled people in the majority. National Advisory Groups (NAGs) received a draft report and further engagement was undertaken to satisfy the equality and diversity values of DRILL.
The 4 Reports will now inform the basis upon which the Programme will proceed and the reframing of the DRILL Themes for research and pilot projects.
DRILL Roadshow Report – Northern Ireland
DRILL Roadshow Report – England
DRILL Roadshow Report – Scotland
Adroddiad Sioeau Teithiol & Cysylltu Cymru
Thank you to all who have participated so far with DRILL. Please stay in touch.
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