DRILL Blog and News


Fionn is 60, and has two long-term conditions for which there are no effective treatments. He wanted to be able to call on a social safety net; the best thing on offer at the moment seems to be a spectacularly uncomfortable hammock.


I’m exactly the same as anyone else who’s gathered up a lifetime of training and experience. I have a lot of skills. People come to me for advice. They offer me work. They offer me money to do that work.


And I can do the work, but it makes me ill. I don’t mind; I’ve always been ill, and I love my work. I just have to stop every now and again till I get better, then I can do some more.


Now that I’m older, those pauses have got longer. I might work for five months and have to stop for another four. The trouble is that when the income stops, the bills don’t. I live alone, so I have to claim benefits.


When I do get ill, it can be sudden and severe. One day I can be leading a seminar, the next I can’t fetch a bowl of cereal without help. What I need at this point is a benefit system that that can cushion me during those down times, and enable me to get back to work again as soon as my health allows. Instead I’m faced with a disability benefit system that appears to be based on bizarre assumptions:


“Disabled People Will Avoid Claiming If You Make It Inaccessible Enough


So, I have to scan a 50-odd page ESA booklet because I can’t write by hand, type 6,000 words, print it out, and then transport it a mile to a post box.


Things Medicine Can’t See Are Likely Fake


So, I have to have to demonstrate the invisible, to someone who’s been told I’m probably lying.


“Ill People Can Stay In Work If You Just Make the Alternative Unpleasant Enough


So, the first 13 weeks of my claim are paid at such a low rate that I can’t afford to heat my home, fund my special diet, or keep on the business services that mean I can return to work easily in future. The stress of the mounting debt delays my recovery.


Ill People Either Get Better Or Die



Because neither outcome has occurred I will have to repeat the whole miserable cycle over and over again, year after year, even though my condition(s) has not changed.  And who does this benefit?



So why don’t I just use the Permitted Work Scheme? It allows me to work a few hours a week, and even to keep some of the money. I thought it was a great idea when I heard about it. Then I asked for the form.


What is your job title?

“It depends. Every project I take on has a different title. I’ve been working since I was 15, and I can do quite a lot of things.”


How many hours per week do you work?
“I’m self-employed. I can’t work consistently, so I can’t build my business up, and I never know how much work I’m going to be offered. I might go three weeks without a call, then get several offers at once.”


How much do you earn?

“It depends who I’m working for. My average pay’s a bit low for someone with my experience, but I do sometimes get well-paid projects, especially if the client’s desperate for help. But I’m also keen to support new businesses that can’t offer much. So, anything from £15 to £45 per hour.”


I was warned against saying I that can earn more than minimum wage by a welfare benefits officer, who told me it may lead to questions about why I’m in the Support Group.

It’s deeply depressing that DWP still hasn’t realised that severe disability doesn’t preclude academic achievement or good business skills, but I saw his point. Trouble is, I can’t lie about my earnings, yet clients would think I was mad if I asked them to pay less. And there are now no specially trained Jobcentre disability advisors to build relationships with individuals and gain an understanding that they’re chronically ill, not trying to play the system.


If I can’t return to my Employment & Support Allowance claim when I get ill – without a financial punishment for trying to go back to work, without having to write the same 6,000 words on the same form about the same conditions, and without another stressful and humiliating assessment – then it’d be lunacy to keep going back to work.


Why did I spend years doing it? Truthfully, I don’t know.


But I’ve had enough now. My talent, my determination, my courage, and my optimism are no match for public policy that confuses equality with treating everyone the same, and where my disabilities are regarded as excuses put forward by work-shy scroungers (and where a 40-year continuous work history evidently doesn’t suggest otherwise). It’s beyond the realms of possibility that either the welfare system or employers will begin properly supporting disabled people before I retire, so I’m taking the safe option now.


I’m giving up trying.

Author: “Fion”

For further information please see report chronic illness citizenship mobilising collective voice social change

Barod: Workshop event

Anne Collis, from Barod, has received funding from The British Sociological Association to organise a workshop on ethics for anyone who considers themselves an ‘early career researcher’. The workshop will be held in Bangor (Wales) but the event is not restricted to people based in Wales. There are only 30 places available so if you would like a place, please get in touch with Anne Collis at [email protected] or Sarah at [email protected].

For more information please Barod project page


‘Getting Ethics’: ethics as practice and praxis

Friday 4th May 2018

Bangor University, North Wales

Cost: £5 for BSA members, £15 for non-BSA members


A one-day event for early career researchers (ECRs).

For this event, ECR includes postgraduate research students, post-docs and others who consider themselves to be ECRs.


Our keynote speaker will be Dr David Calvey of Manchester Metropolitan University, whose recent publications include: Covert Research: The Art, Politics and Ethics of Undercover Fieldwork (2017), London: Sage; ‘Covert: The Fear and Fascination of a Methodological Pariah’ (chapter 31) in The Sage Handbook of Qualitative Research Ethics, edited by Ron Iphofen & Martin Tolich (2018), London: Sage.


This event will explore the meanings of ‘getting ethical approval’ and what it means to be undertaking research ethically. Our particular focus will be ethnographic research, however the issues are transferrable to other modes of inquiry. We consider ethics as encompassing a number of ‘phases’ inter alia the pre-research question, through the conduct of research in real time, to final dissemination and consumption of research.


Ethics is an increasingly central and complex field both practically and philosophically. What one researcher or institution might take as ethical, another might regard as problematic. We rarely verify the acceptability of consent packs or explore what ‘ethical’ means with those potentially about to ‘be researched’. It is therefore an interesting position to ponder: what if what is acceptable to the institution granting the right to research clashes with what is acceptable to those potentially about to ‘be researched’? How should a compromise be reached and where does this leave the researcher in terms of obtaining final ethical approval from the institution for conducting the research?


Our aim here is to enable ECRs to think through the issues around ethics in a worldly context (i.e. as practice and praxis). The workshop might be thought of as working through ‘pre ethics’, ‘situated ethics in the field’, and ‘the ethical afterlife’ of work when it is in the public domain. It is this ‘end to end ethics’ orientation that that will make this event particularly useful for ECRs.


Geographically, holding the event at Bangor University lends itself to addressing ethical issues with regards to cultural and linguistic minority communities. There will be an opportunity here to generate debate regarding identity, community, and civil rights, with a particular focus on Wales and Welsh identity as a case study. This offers an opportunity for fruitful, if potentially emotive, discussions, and the organisers will ensure respectful interactions on these topics, handled with sensitivity and parity.


There will be opportunities to:

  • learn by listening to speakers
  • share experiences and provide peer support
  • discuss topics in the workshops that affect you as an Early Career Researcher
  • network with a view to potential future collaborations



10am                Welcome and introduction

10.15am            Organising the workshops

10.30am            Keynote speaker: Dr David Calvey

11.15am            Workshops

12.15pm           LUNCH

1pm                  Workshops

2pm                  Speakers: Dr Alex Plows, Dr Alexis Paton, Dr Sara Louise Wheeler

3.15pm             Panel and ‘what’s next’

3.45pm             Was it worth coming?

4pm                  Home (or more networking)


About the afternoon speakers:

Dr Alexandra Plows, Bangor University. Her research expertise includes researching local and public knowledge, empirical studies of regional labour markets, and ethnographies for messy social realities.

Dr Alexis Paton, University of Leicester, has several years’ experience of “getting ethics” through her work with the NHS. Her research focuses on decision-making in the clinical context, using a socio-bioethics approach that uses empirical work to examine decision-making theory, policy, and practice.

Dr Sara Louise Wheeler, Y Coleg Cymraeg Cenedlaethol, Bangor University. A methodological pluralist and bricoleuse, with particular expertise in auto/ ethnography and reflexivity, she has research and teaching interests in identities, cultural belonging and lived experiences of languages, health, and, currently, the early career trajectory.


About the workshops

The application form for this event includes space for you to say what you would like to discuss with other ECRs. You may be looking for answers or insights to address a challenge that you are facing or have faced. You may want to be part of a general discussion about an aspect of ethics. We will share the topics with all attendees in advance of the event, provided you submit them by 4pm on the 3rd of April 2018. You are encouraged to consider ‘pitching’ to host a workshop during the 10.15am slot. The workshops are primarily for discussion, not for dissemination. You will be given 30 seconds to outline what you would like the workshop to discuss and what you hope to get out of the workshop. If there are more pitches than can be accommodated in the two workshop sessions, similar pitches may be combined or attendees asked for a show of hands for which workshops they are most interested in joining. During the lunch break, areas of the room will be allocated for informal discussion and networking for any topics that do not result in a workshop. You do not need to have the answers, but you do need to be comfortable chairing a discussion and making sure that the group make a record of the discussion on flipchart paper. The flipcharts will be reviewed by the Panel during the afternoon speaker slot. The Panel will then speak briefly about what they see as key themes or points of interest.


Workshops as data-generating activities

Within a workshop, attendees are free to: agree to share ownership of the records made on the flipchart; photograph the flipcharts and use them within their own research, provided any information generated within the workshop is cited by name of workshop and details of the event; collaborate after the event (e.g. write a paper based on the workshop or consider a collaborative grant application based on the workshop theme). After the event, the organisers intend to co-author a paper about the workshops. We will acknowledge all attendees as contributors to the paper. For more information and to book a place as a delegate, please contact:

Dr Sara Louise Wheeler: [email protected]

Anne Collis: [email protected]


‘Deall Moeseg’:

gweithdy moeseg fel ymarfer ac arfer

Dydd Gwener, 4 Mai 2018

Prifysgol Bangor, Gogledd Cymru

Cost: £5 i aelodau BSA, £15 i rai sydd ddim yn aelodau BSA


Digwyddiad undydd i ymchwilwyr ar ddechrau eu gyrfa.

Ar gyfer y digwyddiad hwn, mae ymchwilwyr ar ddechrau eu gyrfa yn cynnwys myfyrwyr ymchwil ôl-radd, ôl-ddoethuriaid ac eraill sy’n ystyried eu hunain i fod yn ymchwilwyr ar ddechrau eu gyrfa.


Ein prif siaradwr fydd Dr David Calvey o Manchester Metropolitan University, mae ei gyhoeddiadau diweddar yn cynnwys: Covert Research: The Art, Politics and Ethics of Undercover Fieldwork (2017), London: Sage; ‘Covert: The Fear and Fascination of a Methodological Pariah’ (pennod 31) in The Sage Handbook of Qualitative Research Ethics, golygwyd gan Ron Iphofen a Martin Tolich (2018), London: Sage.


Bydd y digwyddiad hwn yn archwilio ystyr ‘cael cymeradwyaeth foesegol’ a beth mae’n ei olygu i wneud ymchwil yn foesegol. Byddwn yn canolbwyntio’n arbennig ar ymchwil ethnograffeg, ond gellir trosglwyddo’r ystyriaethau i ddulliau ymholi eraill. Rydym yn ystyried bod moeseg yn cwmpasu nifer o ‘gyfnodau’ sy’n cynnwys ymhlith pethau eraill y cwestiwn cyn ymchwil, cynnal yr ymchwil mewn amser real, i’r lledaenu terfynol a defnyddio’r ymchwil.


Mae moeseg yn faes cynyddol ganolog a chymhleth yn ymarferol ac yn athronyddol.  Gall yr hyn y mae un ymchwilydd neu sefydliad yn ei ystyried yn foesegol, gael ei ystyried yn broblemus gan rywun arall. Ni fyddwn yn aml yn gwirio pa mor dderbyniol yw pecynnau cydsynio neu’n ystyried beth yw ystyr ‘moesegol’ mewn perthynas â’r rhai a all cael eu ‘hymchwilio’. Felly mae’n gwestiwn diddorol i’w ystyried: beth os yw’r hyn sy’n dderbyniol i sefydliad sy’n caniatáu’r hawl i ymchwilio yn gwrthdaro gyda’r hyn sy’n dderbyniol i’r rhai a all cael eu ‘hymchwilio’? Sut dylid cael cyfaddawd a lle mae hyn yn gadael yr ymchwilydd o ran cael cymeradwyaeth foesegol derfynol gan y sefydliad ar gyfer cynnal yr ymchwil?


Ein bwriad yw galluogi ymchwilwyr ar ddechrau eu gyrfa i roi ystyriaeth fanwl i faterion moeseg mewn cyd-destun bydol (hynny yw fel ymarfer ac arfer). Gellir ystyried y gweithdy fel ffordd o weithio drwy’r materion ‘cyn moeseg’, ‘moeseg wedi’i leoli yn y maes’, ac ‘ôl-fywyd moesegol’ y gwaith pan fydd yn gyhoeddus. Yr agwedd ‘moeseg o’r dechrau i’r diwedd’ hon fydd yn gwneud y digwyddiad hwn yn arbennig o ddefnyddiol i ymchwilwyr ar ddechrau eu gyrfa.


Yn ddaearyddol, mae cynnal y digwyddiad ym Mhrifysgol Bangor yn golygu y gellir mynd i’r afael â materion moesegol mewn perthynas â chymunedau lleiafrifol diwylliannol ac ieithyddol. Bydd cyfle yma i greu trafodaeth am hunaniaeth, cymuned a hawliau sifil, gan ganolbwyntio’n arbennig ar Gymru a hunaniaeth Gymraeg fel astudiaeth achos. Mae’n gyfle i gael trafodaethau buddiol, efallai’n emosiynol, a bydd y trefnwyr yn sicrhau rhyngweithio parchus ar y pynciau hyn, yn delio â nhw gyda sensitifrwydd a chydraddoldeb.


Bydd cyfleoedd i:

  • ddysgu trwy wrando ar siaradwyr
  • rhannu profiadau a chael cefnogaeth gan gyfoedion
  • trafod pynciau yn y gweithdai sy’n effeithio arnoch chi fel ymchwilydd ar ddechrau eich gyrfa
  • rhwydweithio gyda golwg ar gydweithio posib yn y dyfodol



10am Croeso a chyflwyniad

10.15am Trefnu’r gweithdai

10.30am Prif siaradwr: Dr David Calvey

11.15am Gweithdai

12.15pm CINIO

1pm Gweithdai

2pm Siaradwyr: Dr Alex Plows, Dr Alexis Paton, Dr Sara Louise Wheeler

3.15pm Panel a ‘beth nesaf?’

3.45pm Oedd hi’n werth dod yma?

4pm Mynd adref (neu ragor o rwydweithio)


Manylion am siaradwyr y prynhawn:

Dr Alexandra Plows, Prifysgol Bangor. Mae ei harbenigedd ymchwil yn cynnwys ymchwilio i wybodaeth leol a chyhoeddus, astudiaethau empirig o farchnadoedd llafur rhanbarthol, ac ethnograffeg ar gyfer realiti cymdeithasol di-drefn.

Mae gan Dr Alexis Paton, Prifysgol Caerlŷr, sawl blwyddyn o brofiad o sicrhau moeseg trwy ei gwaith gyda’r GIG. Mae ei hymchwil yn canolbwyntio ar wneud penderfyniadau yn y cyd-destun clinigol, gan ddefnyddio agwedd gymdeithasol-biofoeseg sy’n defnyddio gwaith empirig i edrych ar theori, polisi ac ymarfer gwneud penderfyniadau.

Dr Sara Louise Wheeler, Y Coleg Cymraeg Cenedlaethol, Bangor University. Mae’n lluosogaethydd methodolegol a bricoleuse, gydag arbenigedd arbennig mewn awto/ ethnograffeg ac atgyrchedd, mae ganddi ddiddordebau ymchwil ac addysgu mewn hunaniaeth, perthyn diwylliannol a phrofiadau bywyd o ieithoedd, iechyd, ac ar hyn o bryd, taflwybr gyrfa gynnar.


Gwybodaeth am y gweithdai

Mae’r ffurflen gais ar gyfer y digwyddiad hwn yn cynnwys lle i chi ddweud beth yr hoffech ei drafod gydag ymchwilwyr eraill ar ddechrau eu gyrfa. Efallai eich bod yn chwilio am atebion neu wybodaeth i fynd i’r afael â her rydych chi’n ei wynebu neu wedi ei wynebu. Efallai yr hoffech fod yn rhan o drafodaeth gyffredinol am agwedd ar foeseg. Byddwn yn rhannu’r pynciau gyda phawb fydd yn bresennol cyn y digwyddiad, cyn belled â’ch bod yn eu cyflwyno cyn 4pm ar 3 Ebrill 2018. Anogir chi i ystyried cyflwyno eich syniad i gynnal gweithdy yn ystod y slot 10.15am. Mae’r gweithdai ar gyfer trafod yn bennaf, ac nid i ledaenu gwybodaeth. Cewch 30 eiliad i amlinellu’r hyn y dymunwch ei weld yn cael ei drafod yn y gweithdy a beth yr hoffech ei gael o’r gweithdy. Os bydd mwy o geisiadau i gyflwyno syniadau nag sydd o amser yn y ddwy sesiwn o weithdai, gellir cyfuno syniadau tebyg neu ofyn i’r rhai sy’n bresennol godi llaw dros y gweithdai sydd fwyaf o ddiddordeb iddynt. Yn ystod amser cinio, caiff rhannau o’r ystafell eu neilltuo ar gyfer trafodaeth anffurfiol a rhwydweithio am unrhyw bynciau na fydd yn cael eu trafod mewn gweithdy. Nid oes angen i chi gael yr atebion, ond mae angen i chi fod yn gyfforddus gyda chadeirio trafodaeth a gwneud yn siŵr bod y grŵp yn cofnodi’r drafodaeth ar bapur siart troi. Caiff y siartiau troi eu hadolygu gan y panel yn ystod sesiwn y siaradwr yn y prynhawn. Bydd y Panel wedyn yn siarad yn fyr am y themâu allweddol neu bwyntiau o ddiddordeb yn eu barn nhw.


Gweithdai fel gweithgareddau cynhyrchu data

Mewn gweithdy, mae’r rhai sy’n bresennol yn rhydd i: gytuno i rannu perchnogaeth o’r cofnodion a wnaed ar y siart troi; tynnu llun ffotograff o’r siartiau troi a’u defnyddio yn eu hymchwil eu hunain, cyn belled â bod unrhyw wybodaeth a gynhyrchir yn y gweithdy yn cael ei ddyfynnu gydag enw’r gweithdy a manylion y digwyddiad; cydweithio ar ôl y digwyddiad (e.e. ysgrifennu papur yn seiliedig ar y gweithdy neu ystyried cais am grant ar y cyd yn seiliedig ar thema’r gweithdy). Ar ôl y digwyddiad, mae’r trefnwyr yn bwriadu ysgrifennu papur am y gweithdai ar y cyd. Byddwn yn rhoi cydnabyddiaeth i bawb oedd yn bresennol fel cyfranwyr i’r papur. I gael rhagor o wybodaeth ac i archebu lle fel cynadleddwr, cysylltwch â:

Dr Sara Louise Wheeler: [email protected]

Anne Collis: [email protected]

Peer-led research reveals how to make peer support a highly effective addition to mental health services.

On Thursday 8th Febuary, peer-led charity Inclusion Barnet launch new research which reveals how to make peer support an effective addition to mental health services. The report finds that in order to be effective, the implementation of peer support must be accompanied by an understanding of how the values of peer support can be embedded within the working contexts of each individual team and service. The report also explores those values, capturing the principles of person-centred practice at the heart of peer support.

Peer support is a fast-moving global trend in mental health service delivery; the numbers of people who have experienced, and learned to manage their own mental health difficulties, being employed to support others facing similar struggles, grows year on year. Yet, peer support remains a controversial and contested practice. It has often fallen foul of those who are suspicious of a trend which places value on “lived experience” rather than professional qualifications and attaches value, rather than stigma, to the experience of mental-ill health. Even those who advocate for its efficacy agree that its specific benefits are difficult to identify and describe, let alone deliver and quantify.

Inclusion Barnet’s research was funded as part of the DRILL (Disability Research on Independent Living and Learning) programme, the world’s first major research programme led by disabled people. The resulting research sheds new light on what is valuable about peer support and how it can be implemented as an effective form of practice. It shows that embedding a ‘counter culture’ of practice such as peer support within traditional statutory organisations requires skill and strategic planning, as well as an understanding of how to translate the values of peer support into everyday practice interactions. It lays out the blue-prints for implementing effective peer support for organisations that are new to peer support or are struggling to get it right.

Caroline Collier, CEO of Inclusion Barnet noted: “Peer support is a growing trend in statutory service delivery and a vital element of any person-centred mental health service, however people struggle to understand what it is, and how to make it work. As a peer-led organisation, we felt it was time to undertake a robust piece of research which could explode myths and serve as an accessible and practical guide for comissioners, managers and peer support workers. Increasing the efficacy of peer support is in everyone’s interests.”

The report is based in a qualitative study, using interviews with 36 peer support workers and their colleagues from all over the country and from different sectors. It includes a thoughtful exploration of what peer support is and the benefits of using lived experience in service delivery. It also includes clear recommendations for the implementation of peer support within organisations: including strategic planning, recruitment and supervision.

Dr Julie Repper, Director of ImROC (Implementing Recovery through Organisational Change) says: “This report captures so much that is unique and important about peer support and contains some very useful recommendations. I want to make it essential reading for all of our peers and their teams”.

The report is available on the project’s webpage

For further information visit:  www.drill.org.uk or www.inclusionbarnet.org.uk

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:


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)
Mental Health Foundation
Positive Futures

Edinburgh Centre for Research on the Experience of Dementia



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

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


Blog Post: Humare Avaaz – Our Voice (Part 2)


Read Blog Post: Humare Avaaz – Our Voice (Part 1)

‘So, why do you want to research into the barriers to independence faced by disabled Asian women, surely everyone knows what the barriers are?’ Well, on an anecdotal basis and having lived the issue for some 25 years we can understand why the question might be asked. Triple disadvantage: disability, a BME group, being women – possibly a fourth, stigma/discrimination within their communities both as women and specifically as disabled women. One problem however, we didn’t think anyone had actually asked disabled Asian women, hence the project name: Humare Avaaz – our voice. Our desk research has shown this to be so.


This finding poses a possibly worrying question. Has policy on and support for disabled Asian women been based on conjecture and assumption, e.g. that disabled Asian women benefit more than women from other communities from a close knit and extensive family support network such that culturally sensitive social care support is not required? Does support take account of the diversity among Asian communities? Indeed, previous funded community research of ours indicates that extremely poor wellbeing/health can be the result of exploitative support expectations of ‘hidden carers’, i.e. the so-called network has caused a form of disability.


On to the next possibly contentious point. We run a day care and development centre. We accept that ‘day care’ is anathema to the social model but we are pragmatists. If a fully functional family support network was there perhaps we wouldn’t exist. In our experience, while such support networks may exist they operate at a social level and cannot meet more complex and formal needs.


So, what does the social model mean to our clients? Does the social model and political objectives within the disability movement have any relevance to our project and research subjects? They certainly do for the project team because we understand the context, it’s our job to. But this is co-produced research; what do our co-researchers and research subjects think. The answer is ‘not a lot’. In fact, the very concept of independence is novel for most, even having discounted those whose intellectual impairments, limited education or widely ranging social factors prevent them fully considering the concept. Each focus group has presented the same issue; how to research into barriers when ‘Barriers to what?’ requires extensive explanation and discussion. Some, of course, are ‘politically’ aware but most have lived a life of systemic dependency with a voice that has never been heard.


Independence in terms of being able to go shopping, do the housework, get married is perhaps not what we expected to hear but it‘s what we’ve often heard. What has politics got to do with such issues? Is there a disconnect between some disability lobbyists and the views of at least some disabled people? Our role is to present what our research subjects tell us, not to be a proxy for them or lobbyists within the disability rights movement. It’s important that what we might wish to lobby for in other circumstances does not influence our co-research or influence the conclusions that we and our co-researchers draw from its findings.


Next episode – ‘What is research?’


Find out more about the project – Humare Avaaz (Our Voice) – exploring the experiences and barriers faced by disabled Asian Women

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!

Find out more about the project – Humare Avaaz (Our Voice) – exploring the experiences and barriers faced by disabled Asian Women

Health and Care Research Wales- Supporting Social Care research Survey


The new Social Care Research Strategy sets out a vision ‘For Wales to be internationally renowned for its excellent social care research that supports the people of Wales by informing and improving social care policy and practice.’  In order to achieve this people who use services, people who provide services and the public in general need to be more aware of research evidence and how it can be applied to their lives. The Strategy will be launched in the next few months and the implementation will support activities that will achieve this vision.


Health and Care Research Wales have a training programme that supports research in Wales. However, there is a need for an increase in training that has a social care research focus. We want to make sure that the training meets the requirements of people involved in research. We have developed a survey for people interested in social care research to help us understand what the training programme should include.

The links below will take you to the survey. The closing date for the survey is 1st January 2018.




Catherine Poulter. Social Care Research Manager. Health and Care Research Wales.



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’.

> Read the Research Report – ‘Does it matter? Decision-making by people with learning disabilities’


Keith Lynch,
Vice-Chair People First (Scotland)

Final call for applications for DRILL funding is now closed

The Disability Research on Independent Living & Learning Programme’s (DRILL) final open call for applications is now closed.  DRILL is fully funded by the Big Lottery Fund and is delivered in partnership by Disability Action, Disability Rights UK, Disability Wales and Inclusion Scotland.


DRILL is led by disabled people and funds coproduced research and pilot projects to find solutions about how disabled people can live as full citizens and take part socially, economically and politically.  To date almost £1.5 million has been committed to projects in England, Northern Ireland, Scotland and Wales.  Find out more on these projects here.


In the final funding call which closed on 8 August 2017, we received over 100 applications from across the UK.  DRILL will now begin a process of assessing the applications by using our National Advisory Groups (NAGs) and the Central Research Committee (CRC).  It is anticipated that applicants will be aware of the outcome by the end of November 2017.


Thank you for your interest in the DRILL Programme.


Dr Sally Witcher OBE
Chief Executive Officer, Inclusion Scotland  

Kevin Doherty
Chief Executive Officer, Disability Action

Kamran Mallick
Chief Executive Officer, Disability Rights UK

Rhian Davies
Chief Executive Officer, Disability Wales



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