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

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)

DRILL launch Scotland

The Launch

The launch of the DRILL Programme took place on the 22nd September at the Lighthouse, Glasgow.  The event was hosted by Inclusion Scotland’s CEO, Sally Witcher, and speakers included Paul Gray, Director General Health and Social Care for Scottish Government; Dr James Elder- Woodward OBE, lead for the Independent Living in Scotland Movement; Professor Nick Watson, Director of What Works Scotland and the Centre for Disability Research at the University of Glasgow and Jackie Killeen, Director for Scotland for the Big Lottery Fund.   Attendees included disabled people, academics, civil servant, health colleagues, funders and third sector colleagues.

National Advisory Group Scotland members

The following people sit on the DRILL National Advisory Group (NAG) in Scotland:

Tressa Burke (Chair)

Chief Executive, Glasgow Disability Alliance and has steered  the direction  of GDA  to build a multi award winning community of 3500+ disabled members.

Etienne d’Aboville

Chief Executive, Glasgow Centre for Inclusive Living (GCIL) A Disabled People’s Organisation that has been providing a range of support, training, housing and employment services since 1996.

Maureen Martin

Chief Executive, Edinburgh Development Group and has worked along side disabled people and their families for the past 40 years via project management, start ups, people and finance.

Sandra Wilson

Chair, RNIB Scotland Branch, director of Citizens Advice & Rights Fife, a director of LEAD Scotland and a member of the Scottish Enterprise Equal Opportunities External Advisory Group.

Dr Oliver Escobar

Lecturer in Public Policy, School of Social and Political Science, University of Edinburgh, Co-Director, What Works Scotland, Public Engagement Fellow at the Beltane Network, co-founder and Honary Researcher at QMU.

Alison Stout

Principal Social Researcher in the Scottish Government  and Head of the Equality and Tackling Poverty Research Team focusing on commissioning research and analysis to inform the work of the Scottish Government’s Equality Unit.

Prof Kirstein Rummery

Professor of Social Policy, University of Stirling and Co-Director, Centre for Gender and Feminist Studies, is an active member of the Social Policy Association and serves on the Executive Committee and sits on the editorial boards of the Journals and is outgoing editor of Social Policy Review.

New Members 2018

Catriona Kirkpatrick

Development Manager at Engender, Scotland’s Feminist organisation working on women’s social, economic and political equality in Scotland.

Laura (Mole) Chapman

A highly skilled researcher, author and programme facilitator and has many years of experience in the equality fields of human rights, housing, social justice, education and learning and development.

Dr Fiona Kumari Campbell

A tenured Academic in the School of Education and Social Work at University of Dundee. Currently undertaking research in ableism, social care, disability studies and South Asian approaches to disability.

Sarah Munro

A researcher/ analyst within the public sector for the last 20 years in a number of various roles, Human Rights Commission, the Public Sector Equality Duty, Scottish Government in the Labour Market and Skills Analytical Unit and the Wood Commission focusing on equality issues.

Lynne Tammi

National Coordinator of Article 12 in Scotland, promoting young people’s human rights. Qualifiest in Community Learning and Development, Social Services Management and Mediation (conflict resolution). An active campaigner of Gypsy/ Traveller rights on  both a professional and personal level.

Jo Ozga

Policy Worker with Scottish Women’s Aid, working to improve housing providers’ response to domestic abuse and the prevention of women and children’s homelessness.

Zara Todd

Engagement Manager at Project Scotland, Co-Director of Sisters of Frida (a disabled women’s organisation) and sits on the European Disability Forums Women’s Committee. An active disability rights advocate for over 20 years. Has advised on disability at local, national and international levels including the UK Government, the British Council and Council of Europe.

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

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

DRILL Roadshow Report – Wales

Adroddiad Sioeau Teithiol & Cysylltu Cymru


Thank you to all who have participated so far with DRILL.  Please stay in touch.

Inclusion Scotland hosts Scottish launch of the world’s first disabled people led research programme today in Glasgow

This evening sees the Scottish launch of the world’s first disabled people led research programme at The Lighthouse in Glasgow.

Disability Research on Independent Living and Learning (DRILL) is an innovative research programme led in Scotland by Inclusion Scotland and partnered across the UK by Disability Action Northern Ireland, Disability Wales and Disability Rights UK. This ground breaking UK-wide programme is fully funded by a £5 million grant from the Big Lottery Fund. DRILL is expecting to fund a total of 40 research proposals and pilot projects over a 5 year period.

In what we believe to be a world first, disabled people will take the lead throughout. They will be at the forefront of designing projects. Funding streams will be based on disabled people’s priorities. Funding decisions will be made by a Central Research Committee, with a majority of disabled people.

The programme will be delivered in partnership with academics and policy makers to build a better evidence base about approaches that enable disabled people to achieve independent living – to have choice and control over their lives in ways non-disabled people take for granted. This will be used to inform future policy and service provision, and give a greater voice to disabled people on the issues that impact on them.

CEO of Inclusion Scotland, Dr Sally Witcher OBE said:

“Cuts to benefits and care packages have had a devastating impact on many disabled people, leaving them in poverty and with support merely to survive, but not to live. While clearly beyond the power of the DRILL programme to reverse these, it offers fantastic new opportunities to find innovative ways of removing the barriers that prevent disabled people from participating in all aspects of society as equal citizens.”

Paul Gray, Scottish Government Independent Living Champion and Director-General Health and Social Care and Chief Executive NHS Scotland said of the DRILL launch:

“The launch of DRILL is very timely, following the publication of the Scottish Government’s Draft Delivery Plan on implementing disabled people’s rights under the UN Convention. I am delighted to be involved in the launch event, and to support this important contribution to independent living in Scotland”.

Professor Nick Watson, Chair of Disability Studies at the University of Glasgow and Director of ‘What Works’ said:

“Giving control to disabled people and their organisations will ensure that the research commissioned by the programme addresses disabled people’s priorities and needs and that it will provide evidence that will shape future policy and practice development, bringing about real improvement in the lives of disabled people in Scotland and the rest of the UK.”

Dr Jim Elder-Woodward OBE, Independent Convenor of SILC and member of the DRILL National Advisory Group said:

“The Big Lottery Fund is to be congratulated for their foresight and trust in disabled people; for research done by disabled people on the world which disables them is much more powerful and revealing than research done on disabled people by those from that disabling world. The Lottery money will be used by disabled people not just to investigate the issues pertinent to their lives and their social, economic and civic emancipation, but to find the solutions we need.

Jackie Killeen, Director for Scotland, Big Lottery Fund said:

“I’m excited about this project as it clearly has scope to create a step change for disabled people and their ability to live independently. What’s key for me is that it is asking those with lived experience of disability to directly feed into the research. Partnership and co-production really strengthen this work and we hope the project’s results will go on to provide an evidence base to inform future policy and service provision across the UK.”