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)

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.

Eleven new disability research projects receive £1 million as DRILL calls for new bids

Eleven projects across the UK are the latest to receive between £39,000 and £150,000 each of previously awarded funding to explore aspects of how disabled people can live as full citizens in our society.

The projects, which include exploring employment opportunites, housing and social care services for disabled people, are the latest to be funded by DRILL (Disability Research on Independent Living and Learning) programme, a £5 million research scheme led by disabled people and funded by Big Lottery Fund.

The announcement coincides with DRILL’s call for new bids for funding, which is announced this week – it is looking to allocate another £1 million.

All DRILL projects are led by disabled people or people with long term health conditions, working in co-production with academics and policy makers.

The latest grants were approved by the DRILL Central Research Committee, which is chaired by Professor Tom Shakespeare. He said:

“Once again, a terrific set of applications to the DRILL scheme. The Research Committee are delighted to be able to support work about adapted housing, autism, young disabled people, disabled parents and other important issues, from all parts of the United Kingdom. It’s particularly rewarding to see the strong new relationships which are emerging between disabled people’s organisations and university researchers.”

Lead partners on the latest projects to be awarded funding are:

England

  • Change (Leeds)
  • Research Institute for Consumer Affairs (RICA)
  • Sheffield Occupational Health Advisory Service
  • University of Coventry
  • University of Bedfordshire
  • Wiltshire Centre for Independent Living

Northern Ireland

  • Praxis

Scotland

  • University of Stirling
  • Horizon Housing
  • University of Glasgow

Wales

  • Cardiff University

Launched in 2015, the DRILL programme is fully funded by Big Lottery Fund and delivered by Disability Rights UK, Disability Action Northern Ireland, Inclusion Scotland and Disability Wales. DRILL is expecting to fund up to 40 research pilots and projects over a five-year period, all led by disabled people.

Potential projects have until 8th August to put their bids in for the new round of funding.

More information on DRILL can be found on the main Funding page.

Details of the funded projects can be found in the Projects Section

Blog Post – Empowerment matters: An evaluation of the Dementia NI service

Dementia NI Antrim group 2405

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

02890 68 67 68

Email: [email protected]

 

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.

£400,000 for 10 new research projects led by disabled people announced.

Ten projects across the UK have received between £35,000 and £40,000 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.

Nearly £400,000 worth of funding has been granted as the first part of the DRILL (Disability Research on Independent Living and Learning) programme, a £5 million research scheme led by disabled people and funded by Big Lottery Fund.

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 – including 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:

“Historically, research led by disabled people has been instrumental in influencing policy and practice, from the first Disability Discrimination laws 20 years ago to policies to give disabled people more choice and control over our own support.

“We are delighted to announce 10 new research projects led by disabled people, on topics ranging from how best people with learning difficulties can be supported to take decisions – rather than have those decisions taken out of their hands – to what would better support Asian disabled women to lead full lives. We sometimes find the questions posed by disabled people are different from those posed by non-disabled academics, and so this research has the potential to answer questions of most concern to disabled people.

“The programme will involve sharing knowledge, research and skills through genuine co-production between disabled people and academics and should leave  a legacy of greater skills for all involved.”

The 10 successful projects will be led by:

England
Centre for Welfare Reform
University of Lincoln
Asian People’s Disability Alliance
Inclusion Barnet
Vision Sense

Northern Ireland
Queen’s University Belfast – School of Sociology, Social Policy and Social Work

Scotland
Voices of Experience
People First Scotland

Wales
C.A.R.P Collaborations
All Wales People First

Launched in 2015, the DRILL programme is fully funded by Big Lottery Fund and delivered by Disability Rights UK, Disability Action Northern Ireland, Inclusion Scotland and Disability Wales. DRILL is expecting to fund up to 40 research pilots and projects over a five-year period, all led by disabled people.  Around £600,000 will be allocated in the next round of applications, which are currently being assessed.  An announcement is due in February 2017. Further calls for potential projects will be made between 2017 and 2019.

For further information visit www.drilluk.org.uk

November blog post: reflections on DRILL so far


10 new research projects led by disabled people: reflections on DRILL so far.

 

We’re now beginning to see the fruits of our labour over recent months (and years!) in getting the DRILL project up and running.

 

Early in my career a group of mental health service users did some research into life in a long-stay hospital. Academics were already studying people’s mental state and the impact of particular treatments. The service users found that often people living in the hospital were expected to wear clothes that were not their own. They understandably hated this, and the research led to a change of policy.

 

40 years on, we are looking for present day solutions that come from the perspective of lived experience.

 

DRILL was always an ambitious project, but we knew when we started to get such good quality applications we were right to aim high.

 

We have had more than 200 applications thus far, seeking more than £15 million in grants – that’s nearly 40 times the amount of money available for this round of funding. This inevitably means we’ve had to disappoint a lot of people who submitted thoughtful and interesting projects for the central research committee to consider. We’re sorry we’ve not been able to say ‘yes’ to more projects at this stage.

 

It does show, however, the level of appetite there is amongst disabled people to build our own knowledge base and test out ideas which support disabled people to participate fully in society. We are both heartened and excited by this.

 

The 10 projects from across the UK we have picked in this first round of funding cover a multitude of subject areas. They include projects on the support needed for decision making by people with learning difficulties through to the design of peer to peer support programmes for people with mental health problems. There’s also the development of toolkits for professionals working with disabled women and girls who have experienced domestic abuse to looking at ways disabled people can participate in public life.

 

We’re pleased to be funding projects for groups of disabled people such as those with dementia, and those with learning disabilities; these groups often get left behind and struggle to get their voices heard by service providers or service commissioners.

 

The common thread to all these projects is that they are being driven by disabled people, for disabled people; these are core criteria when it comes to getting funding from the DRILL programme. The projects are rooted in questions and approaches which are designed and delivered by disabled people – questions and approaches which may be different to those undertaken by non-disabled people.

 

We hope this will lead to new insights and ways of looking at things which will help develop new solutions to the barriers disabled people face. But we also hope disabled people’s organisations will develop new partnerships and insights into building evidence; and researchers will learn more about how to work in genuine co-production with disabled people. We want the work funded by DRILL to be long lasting, and have an impact on future policy and practice development.

 

This is the first tranche of Big Lottery Fund money to be made available, worth around £400,000. We’ll be announcing a further £600,000 of awards in the spring of next year, which will be larger projects worth up to £150,000 each.

 

The journey has begun. We look forward to learning great things as this fantastic project unfolds over the coming years.

 

Liz Sayce is chief executive of Disability Rights UK, which is providing support for DRILL in England.

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.

Response to the first call for applications to the DRILL Grants Programme

The DRILL Grants Programme closed Wednesday 27 July at 12 noon.  The response to this first call for applications has been remarkable. The DRILL Programme Board is genuinely elated by the response which far exceeds our expectations.

DRILL has received 210 applications from all four nations requesting a total of almost £17million. The assessment process will now take place in August and September. We believe we will be in a position to inform applicants of decisions for Fast Track Applications late September and decisions for Stage 1 Applications early October.

This is the first major UK programme led by disabled people to find innovative ways of enabling us to participate in all aspects of society as equal citizens. The response demonstrates the level of commitment to this new approach and the interest in disabled people and our organisations being leaders in creating knowledge to guide future developments.

For further updates, visit www.drilluk.org.uk

July Blog Post: John Beaton

John Beaton

When I was asked by DRILL to do this blog my initial reaction was to feel privileged and a personal pride that my opinion may be of interest to other people out there in the big bold world of the internet age. This was quickly followed by a wave of  anxiety. What if people thought I was stupid? What if what I wrote was a crude perspective and was ill conceived and executed? Should I reference the literature to support my position?

 

So I settled down to write something a bit more personal, a narrative if you will. Indeed narrative therapy for the people with lived experience has shown positive results in the literature (opps there I go!), so why not try my hand at something new. So not professional, not scientific, and certainly not intellectual (after all these are only pretensions on my part anyway!).

 

What I have decided to write about is how by becoming a researcher I have changed my relationship with myself, and in doing so changed my relationship to the research itself. This in itself provoked questions for me.  As good research does it provokes more questions than it answers and provides a platform for new discourses to be fostered within academia itself.

 

The subject of discourse is something I would like to feel out a little bit dear reader so bear with me whilst I gather my thoughts.  For me there are three discourses at play in what I do, all which I think are of equal value.  Firstly there is the quantitative/empirical/scientific discourse that plays out on paper, in protocols, peer review, consenting documentation and ethics applications.  Where I justify my research and explore its rigour, by holding if up by scrutinising under these different but crucial magnifying glasses. I decided upon a method of critical friends, tough going when you have no undergraduate degree in the discipline in which you are researching (you need all the friends you can get)!  Secondly there is the discourse of the narrative (there is that word again), the qualitative voice, the unabashed subjective.  Not what is to know, but what is felt.  The emotional, often raw, experiential knowledge which resides in the hearts, minds and gut instinct of the people who the topic of this research is played out with. Thirdly is the political.

 

Did he say political? Did he write it with a small “p”?

 

Emancipatory research, is often simplified into the problem by blending the first two discourses with equal validity.  Many address this problem by adopting a fixed philosophical standpoint (indeed critical realism may neatly blend these discourses).  Or by adopting a mixed methods approach, blending the quantitative and qualitative.  But what of this third discourse.  Emancipatory research must blend this third discourse in its intent, execution and impact (no pressure then folks).  The political in this context is not far away.  If indeed we wish to subscribe to the social model of disability, where these barriers reside in how society is organised, not the person’s difference, then so should our social research.

 

The overwhelming subscription of published literature to the scientific model and hence medical model of disability in itself creates of form of intellectual stigma, creating its own barriers to publication and dissemination indeed some may say doing violence to the data collected. So what does this the godfather of stigma research Gofmann (1963) (here he goes with the literature) have to say about this back in the heady days of the civil rights movement, one of the most influential sociologists of the 20th century he posited

 

“…that the individual’s relation to a stigma into three categories:

  • the stigmatized are those who bear the stigma;
  • the normals are those who do not bear the stigma; and
  • the wise are those among the normals who are accepted by the stigmatized as “wise” to their condition.

 

The wise normals are not merely those who are in some sense accepting of the stigma; they are, rather, “those whose special situation has made them intimately privy to the secret life of the stigmatized individual and sympathetic with it, and who find themselves accorded a measure of acceptance, a measure of courtesy membership in the clan.” That is, they are accepted by the stigmatized as “honorary members” of the stigmatized group. “Wise persons are the marginal men before whom the individual with a fault need feel no shame nor exert self-control, knowing that in spite of his failing he will be seen as an ordinary other.” Goffman notes that the wise may in certain social situations also bear the stigma with respect to other normals: that is, they may also be stigmatized for being wise.

 

Until recently, this typology has been used without being empirically tested. A recent study showed empirical support for the existence of the own, the wise, and normals as separate groups.  But, the wise appeared in two forms: active wise and passive wise.  Active wise encouraged challenging stigmatization and educating stigmatizers, but passive wise did not.”

(thanks wiki…)

We need look no further than this as a justification of the emancipatory nature of disability research. We are the wise “intimately privy” and “sympathetic”, we are the “marginal” for whom as subjects of research need “feel no shame”, nor exert “self-control”.  However if we wish to transverse from peer to emancipatory research we must inhabit not the “passive wise”, but the “active wise”. However a word of caution, we can easily move as peer researchers from the “wise” to the “stigmatised” should we not clearly mark the boundaries of our research.

 

We can see Goffman’s work as a point of demarcation for emancipatory research, a stepping of point and one which will unite our participation and action, from the traditional roles of advocacy and activism, taking social research back to its roots and grassroots. After all there is no small “p” in quantitative or qualitative.

 

So what of this changing relationship I mentioned at the beginning.

 

In becoming engaged in conceiving, writing and executing my research (incidentally on stigma), I have re-framed my relationship with my mental illness intrapersonally, changed my relationship with my critical friends interpersonally, and recognised the content and context of these new relationships as equally important. A trinity of the internal, relational and external if you will.

 

Now that would make for a good paper.

Incidentally I think narrative therapy might be good for me.

Blog post provided by John Beaton, a member of the Scottish National Advisory Group

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