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Dr Elizabeth Tilley

Liz Tilley

Profile summary

  • Central Academic Staff
  • Senior Lecturer (HSC - Disability)
  • Faculty of Wellbeing, Education & Language Studies
  • School of Health, Wellbeing and Social Care
  • Health and Social Care
  • elizabeth.tilley

Professional biography

I am a senior lecturer in health and social care. My research and teaching interests include learning disability, advocacy, the interface between disability and sexual & reproductive health, and death, dying & bereavement. I have a particular interest in historical perspectives, ethics and participatory methods in health and social care research.

I chair the Social History of Learning Disability Research Group ( and I recently led an AHRC funded project to develop a co-produced and living archive of learning disability history, in collaboration with Andy Minnion at the Rix Centre, University of East London, and Helen Graham at the University of Leeds ( I am currently leading an ESRC funded project to set up a UK/Japan Inclusive Research Network on Intellectual Disability and Belonging (2019-20). 

I completed my PhD on advocacy for people with learning disabilities in 2006, and then worked as a Policy Advisor at the General Social Care Council before taking up my post as lecturer in the Faculty.

Research interests


Peer reviewed journal articles

Ledger, S., Earle, S., Tilley, E. and Walmsley, J. (2016) ‘Contraceptive decision-making and women with learning disabilities’. Sexualities Vol. 19(5–6) 698–724

Seale, J., Chapman, R., Nind, M. and Tilley, E. (2015) ‘Negotiating a third space for participatory research with people with learning disabilities: An examination of boundaries and spatial practices’. The European Journal for Social Science Research Vol. 28, No. 4, 483–497

Nind, M., Chapman, R., Seale, J. and Tilley, E. (2015) ‘The conundrum of training and capacity building for people with learning disabilities doing research’. Journal of Applied Research in Intellectual Disabilities  doi:10.1111/jar.12213.

Tilley, E. (2013)  Management, leadership, and user control in self-advocacy: an English case study. Intellectual and Developmental Disabilities 51(6): pp. 470-81. 

Marshall, K. and Tilley, E. (2013) “The way it was”: ethical dilemmas in researching and (re)presenting staff stories from the Scottish Highlands, Ethics and Social Welfare, 7:4, pp.400-409

Tilley, E. and Chapman , R.(2013) The ethical underpinnings of self-advocacy support, Ethics and Social Welfare, 7:3, pp.257-271

Tilley, E., Earle, S., Walmsley, J. and Atkinson, D.(2012) ‘The Silence is roaring’: Sterilization, reproductive rights and women with intellectual disabilities, in Disability and Society, 27(3) pp. 413–426

Tilley, E. and Woodthorpe, K. (2011) ‘Is it the end for anonymity as we know it? A critical examination of the ethical principle of anonymity in the context of twenty first century demands on the qualitative researcher’ in Qualitative Research, vol 11, no. 2, pp. 197-212 [This article was reproduced in Qualitative Research in Psychology (volume 5), ed. B. Gough (2014), Sage:  ISBN13: 9781446282335]

Book chapters and reports

Tilley, E., Earle, S., Walmsley, J. and Atkinson, D. (2012)  'Sterilization and women with learning disabilities: an international issue' in S Earle, C Komaromy and L Layne (eds) Understanding reproductive loss: International perspectives on life, death and fertility, Ashgate: Surrey, ISBN: 978-1-4094-2810 

Tilley, E (2010) ‘Exploring advocacy for people with learning disabilities in practice’ Learning Disability Today, Research Unpacked.

Tilley, E and Graham H (2010) Guest Editorial ‘Spending Time: Institutional Change, Time and Money’ in a special issue of The British Journal of Learning Disabilities, Vol. 38, No 2

Tilley, E (2006) 'Resistance in Mencap's history' in Exploring Experiences of Advocacy by People with Learning Disabilities: Testimonies of Resistance, eds Mitchell D. et al. Jessica Kingsley Publishers, London, UK, pp. 128-141.

Tilley, E (2006) 'The Voluntary Sector' in Community Care in Perspective: Care, Control and Citizenship, eds. Welshman, J. and Walmsley, J. Palgrave Macmillan, Basingstoke, UK, pp. 219-232.

 Ledger S and Tilley E (2006) Guest Editorial ‘Self-advocacy: International Perspectives’ The British Journal of Learning Disabilities Vol. 34, Issue 3.

I am a founding member of the International Network on the History of Sterilization and presented a podcast on i-Tunes U 'The Secret History of Sterilization' :



Teaching interests

I am currently leading the production of a new Badged Open Course on learning disability. I recently chaired K220 'Death, Dying and  Bereavement' in production and am now on the presentation module team. 

I supervise PhD students on topics related to learning disability, disability, life stories and inclusive methodologies.

Research Activity

Externally funded projects

Establishing a UK-Japan inclusive research network in intellectual disability: Co-producing a roadmap for belonging

RoleStart dateEnd dateFunding source
Lead01/Jan/201931/Dec/2019ESRC Economic and Social Research Council
This project aims to foster connections between researchers, self-advocates, families, service providers and policymakers in the field of learning disability, in UK and Japan, in order to explore how learning disabled people can be supported to feel like they belong. The collaboration will explore different theoretical and cultural understandings of ‘belonging’, ‘inclusion’ and ‘a good life’ to identify the places, spaces and relationships in which belonging can best be fostered, as well as to identify the barriers to belonging in different social and cultural contexts. Knowledge and practice will be shared in the areas of health and social care/welfare policy, service provision and advocacy. People with learning disabilities will be at the heart of the project, involved in their capacity as self-advocates and co-researchers. Thus the project will also involve a sharing of knowledge and practice concerning inclusive research, on the understanding that research is another context in which learning disabled people can be supported to ‘belong’.

Reproductive Rights, Contraception and Women with Intellectual Disabilities: Who Decides? Survey

RoleStart dateEnd dateFunding source
Co-investigator01/Apr/201430/Apr/2015Open Society Foundations
Contraceptive choices for women with learning disabilities’ is an Open University research project, supported by a grant from Open Society Foundations (Grant No: OR2014-12989). This inclusive project set out to explore women’s contraceptive decision-making and sought to include women with mild to moderate learning disabilities as well as women with high support needs. Between December 2014 and April 2015 we interviewed 19 women living in several locations across the United Kingdom.

Developing a co-produced, digital, and living archive of learning disability history: An exploration of ethics, ownership and new connectivities (K-12-021-ET)

RoleStart dateEnd dateFunding source
Lead01/Apr/201430/Jun/2017AHRC Arts & Humanities Research Council
The OU’s Faculty of Health & Social Care has been funded by the Arts and Humanities Research Council to develop a co-produced digital and living archive of learning disability history. The project, led by Dr Liz Tilley and conducted in collaboration with the University of East London (Rix Centre) and University of Leeds (School of Fine Arts, Art History and Cultural Studies), runs from 2014-2017. The project explores issues involved in developing an accessible digital archive in collaboration with people with learning disabilities, alongside stakeholders in the fields of technology and design; new media; health and social care; heritage, archives and museums; and education. During the project, a working prototype archive will be developed. The process of producing this prototype archive will enable the team to address a series of conceptual, ethical, legal and technological research questions; set out a sustainability plan for the long-term viability of a learning disability digital archive; and compile training resources and guidance for stakeholders in health and social care, education, and museums, libraries and archives to support people with learning disabilities to become actively involved in collating and recording their history. Please keep an eye on the project website for more information:

Learning Disability, Challenging Behaviour and Social Work: A Literature Review

RoleStart dateEnd dateFunding source
Lead01/Mar/201422/Oct/2014TCSW The College of Social Work
The project is a literature review for The College of Social Work, covering research evidence on best practice in learning disability, challenging behaviour, and social work. This project arises from the commitment of The College of Social Work to support the action programme agreed between the Department of Health and a range of professional bodies in the aftermath of the abuse at Winterbourne View, revealed in a TV documentary. Its aim is to produce guidance on good practice for social workers who support people with learning difficulties who display challenging behaviour. The objective of the literature review is primarily to inform the thinking of the College bodies – the project steering group and the Professional Assembly – who will be deciding what form the good practice guidance will take. The College wants to ensure that the advice is based on good evidence where that exists. It may also contribute directly to the development of curriculum guidance or other support materials. The final report can be found here:

MacIntyre Commissioning for Compassion

RoleStart dateEnd dateFunding source
MacIntyre Care has, in recent years, rolled out ‘Great Interactions’, a comprehensive change management initiative to ensure that front line staff focus on the quality of the relationship between them and service users, their families, advocates and friends. In addition to training, this initiative has encompassed personality profiling, changes to recruitment practice, to appraisals and to first line manager practice; and tools for reflective practice. The Theory of Change is that workforce ‘behaviour’ rather than ‘values’ is the key to increasing choice and control in the lives of people with learning disabilities. This project evaluates the impact of ‘Great Interactions’ to provide evidence to influence commissioners to move away from commissioning based on cost and risk aversion to outcomes based commissioning. To accomplish this, and using a range of research methods including questionnaires, interviews and observation, the project focuses on the following: • What success looks like • The impact of ‘Great Interactions’ training on service users, families and staff

MacIntyre Memories: Jubilee website

RoleStart dateEnd dateFunding source
Since 1966, when it was founded by a parent of a disabled child, MacIntyre has grown to provide support services for over 1,000 children and adults with learning disabilities. To mark its first fifty years, in January 2016 MacInytre Care will launch a celebratory Jubilee history. Using a rich mixture of media including audio, video, photographs, illustrations and text, the Open University research team has worked with MacIntyre to develop an inclusive, interactive and accessible website that celebrates the history of MacIntyre and records their history within the context of the broader changes in learning disability policies and practices.

Pushing the boundaries of participatory research with people with learning disabilities (K-11-043-ET)

RoleStart dateEnd dateFunding source
Lead01/Mar/201331/Dec/2014ESRC Economic and Social Research Council
The focus of the ESRC seminar series (2012-2014) is to explore the methodological challenges related to: 1) involving people with learning disabilities in data analysis, and 2) involving people with learning disabilities who have high support needs in research. The project is led by Professor Jane Seale, in conjunction with Professor Melanie Nind, Dr Liz Tilley, and Dr Rohhss Chapman.


Between speaking out in public and being person-centred: collaboratively designing an inclusive archive of learning disability history (2018)
Brownlee-Chapman, Chloe; Chapman, Rohhss; Eardley, Clarence; Foster, Sara; Green, Victoria; Graham, Helen; Harkness, Elizabeth; Headon, Kassie; Humphries, Pam; Ingham, Nigel; Ledger, Sue; May, Val; Minnion, Andy; Richards, Row; Tilley, Liz and Townson, Lou
International Journal of Heritage Studies, 24(8) (pp. 889-903)
A systematic review of interventions available during care crises for individuals with learning disabilities (LD) who are cared for by an ageing carer within the United Kingdom (2018)
Vseteckova, Jitka; Tilley, Elizabeth; Mahon, Aoife; Pappas, Yannis and Randhawa, Gurch
PROSPERO International prospective register of systematic reviews, Article CRD42018117604
The changing face of parent advocacy: a long view (2017)
Walmsley, Jan; Tilley, Liz; Dumbleton, Sue and Bardsley, Janet
Disability & Society, 32(9) (pp. 1366-1386)
The Conundrum of Training and Capacity Building for People with Learning Disabilities Doing Research (2016-11-30)
Nind, Melanie; Seale, Jane; Chapman, Rohhss and Tilley, Liz
Journal of Applied Research in Intellectual Disabilities, 29(6) (pp. 542-551)
The experiences of women with learning disabilities on contraception choice (2016-10-27)
Walmsley, Jan; Earle, Sarah; Tilley, Elizabeth; Ledger, Susan; Chapman, Rohss and Townson, Lou
Primary Health Care, 26(9) (pp. 28-32)
Contraceptive decision-making and women with learning disabilities (2016-09-01)
Ledger, Susan; Earle, Sarah; Tilley, Elizabeth and Walmsley, Jan
Sexualities, 19(5-6) (pp. 698-724)
Contraceptive choices for women with learning disabilities (2016-03)
Walmsley, Jan; Earle, Sarah; Tilley, Elizabeth; Chapman, Rohhss; Ledger, Susan and Townson, Lou
Learning Disability Practice, 19(2) (pp. 32-34)
Negotiating a third space for participatory research with people with learning disabilities: an examination of boundaries and spatial practices (2015)
Seale, Jane; Nind, Melanie; Tilley, Liz and Chapman, Rohhss
The European Journal of Social Science Research, 28(4) (pp. 483-497)
Management, leadership and user control in self-advocacy: an English case study (2013-12)
Tilley, Elizabeth
Intellectual and Developmental Disabilities, 51(6) (pp. 470-481)
Exploring the ethical underpinnings of self-advocacy support for intellectually disabled adults (2013-09)
Tilley, Liz and Chapman, Rohhss
Ethics and Social Welfare, 7(3) (pp. 257-271)
Life stories, intellectual disability, cultural heritage and ethics: dilemmas in researching and (re)presenting accounts from the Scottish Highlands (2013)
Marshall, Karrie and Tilley, Liz
Ethics & Social Welfare, 7(4) (pp. 400-409)
Who makes crucial decisions on reproduction and contraception? (2012-10)
Earle, Sarah; Tilley, Elizabeth and Walmsley, Jan
Learning Disability Practice, 15(8) (pp. 34-35)
‘The Silence is roaring’: sterilization, reproductive rights and women with intellectual disabilities (2012-05)
Tilley, Elizabeth; Earle, Sarah; Walmsley, Jan and Atkinson, Dorothy
Disability and Society, 27(3) (pp. 413-426)
Is it the end for anonymity as we know it? A critical examination of the ethical principle of anonymity in the context of 21st century demands on the qualitative researcher (2011-04)
Tilley, Elizabeth and Woodthorpe, Kate
Qualitative Research, 11(2) (pp. 197-212)
International perspectives on the sterilization of women with intellectual disabilities (2012-12)
Tilley, Elizabeth; Earle, Sarah and Walmsley, Jan
In: Earle, Sarah; Komaromy, Carol and Layne, Linda L. eds. Understanding Reproductive Loss: Perspectives on life, death and fertility (pp. 23-36)
ISBN : 978-1-4094-2810-7 | Publisher : Ashgate | Published : Farnham
The Voluntary Sector (2006-10)
Tilley, Liz
In: Welshman, John and Walmsley, Jan eds. Community Care in Perspective: Care, Control and Citizenship (pp. 219-232)
ISBN : 1-4039-9266-5 | Publisher : Palgrave Macmillan | Published : Basingstoke, UK
Resistance in Mencap's History (2006)
Tilley, Liz
In: Mitchell, Duncan; Traustadottir, Rannveig; Chapman, Rohhss; Townson, Louise; Ingham, Nigel and Ledger, Sue eds. Exploring Experiences of Advocacy by People with Learning Disabilities: Testimonies of Resistance (pp. 128-141)
ISBN : 1-84310-359-1 | Publisher : Jessica Kingsley Publishers | Published : London, UK
Advocacy for People with Learning Difficulties: The Role of Two Organisations (2007)
Tilley, Elizabeth Kate
PhD thesis The Open University