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About me


My portfolio of campaigning research covers employment, social security and social care, with a special focus on the impact that policies and services have on disabled people’s lives. I specialise in designing research that shines a light on hidden injustices, and I’ve achieved this by developing accessible research methodologies that enable people from excluded communities to take part.

I have been called to give evidence from my research to parliamentary select committee inquiries, on both disability employment and disability assessments.

From 2017 to 2020 I was lucky enough to receive support to create and lead the pioneering Chronic Illness Inclusion Project (CIIP). The CIIP was a voice for social change for the online chronic illness community, bringing people together across different disease groups. Through community engagement and an ambitious programme of qualitative and quantitative research we explored issues of disability identity and social justice, including social security and employment. Under my leadership the CIIP grew from a research project into a disabled-led advocacy organisation.

The legacy of the CIIP is the concept of energy-limiting conditions (ELC). This term grew out of participants’ desire for a distinct disability identity and a strategy for communicating their access and support needs. I’ve written about the origins and the importance of the ELC concept for International Journal of Disability and Social Justice.

Working with Astriid charity, I oversaw further evidence gathering on the support needs of people with long term health conditions in employment. I also developed training and consultancy for businesses to share our knowledge on how to recruit and retain the ‘invisible talent pool’ of people who need to work differently to accommodate

Most recently my research has considered the perceptions and practices of employers when it comes to supporting people with fluctuating, energy-limiting conditions at work.

My academic background is in social science. Otherwise, all of my work is rooted in my personal experience of severe chronic illness going back over thirty years, and my own fight to belong within society and in the world of work. It is my passion and my privilege to extend this fight to creating a better world for disabled people and those with chronic illness.

Projects

Can flexible working help disability inclusion? Overcoming barriers to Flex Plus working

Associate Researcher. King’s College London.

Evidence shows that disabled people often need Flex Plus working: reduced hours, flexible working times and working from home in order to get in and stay in work. Supervised by Prof Ben Geiger (Faculty of Social Science and Public Policy) and Prof Kim Hoque (King’s Business School) I interviewed a representatives from a range of businesses and sectors to explore the scope for Flex Plus working to improve employment opportunities for people with fluctuating, energy-limiting conditions.

 

Supporting people with long-term conditions at work

Head of Consultancy, Astriid.

Astriid is an employment support charity for people with long-term conditions. I joined in a research and consultancy role to improve businesses’ strategy for recruiting and retaining people with long-term conditions. The consultancy services I designed included a disability inclusion in the workplace survey, workshops on recruiting and supporting people with long term conditions and e-learning module on flexible working for disability inclusion.

 

Challenging Disbelief and Disregard

Associate Researcher. University of Liverpool.

This project explores the ways in which disbelief impacts the experiences of people with ELC in relation to health and social care, education, employment, welfare and social and family life. I designed and conducted the survey yielding over 800 qualitative and quantitative responses for this partnership between Chronic Illness Inclusion and the University of Liverpool, led by Prof Bethan Evans.

 

Energy-limiting chronic illness, employment and social security

Researcher, Knowledge Exchange Programme, University of Leeds/Chronic Illness Inclusion

Findings from Chronic Illness Inclusion’s  in-depth qualitative research on benefits and work were analysed through a Knowledge Exchange Programme with University of Leeds, Prof Jo Ingold and Prof Kate Hardy. I was lead author in the report exploring lived experiences of work and health, barriers and aspirations for work and citizenship and income security among people with energy-limiting chronic illness.

 

WelfareExperiences Project

Coproduction Lead for bid development. University of Kent.

 'WelfareExperiences' Project is a large mixed-methods coproduced comparison of how it feels to claim benefits in five European countries, led by Prof Ben Geiger. I led coproduction in the bid development stage, engaging with grassroots anti-poverty organisations and Disabled People’s Organisations across Europe to secure their involvement in the research.

 

Chronic Illness Inclusion Project

Lead Researcher and Project Manager

I designed and led this groundbreaking project exploring disability identity through emancipatory research among people with chronic illness. A form of digital ethnography creating research environment adapted to people with chronic illness who are often housebound. Mixed methods with survey yielding over 2,000 responses and novel accessible methodology. I was lead author in the report Energy impairment and disability inclusion, develop the concept of energy-limiting conditions. Funded by the National Lottery Community Fund via the DRILL programme of disabled-led research.

















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What are energy-limiting conditions? An introduction to chronic illness at work

What are energy limiting conditions? A guide for employees and their managers is a new resource, produced for Astriid charity. I hope it will be a gamechanger for unlocking conversations about health, disability and work, and lead to more people with chronic illness getting the support they need at work. I've lived with an energy limiting condition (ELC) for decades, but for a long time, I didn’t have the language to describe my needs and ask for adjustments that could have helped me take part in life.  I didn't even know if I was allowed to do so, because I didn't see people like me in representations of disability or in the landscape of disability rights.  The work I did with Chronic Illness Inclusion (CII) taught me that many of us feel the same. The gap between our day-to-day reality and society's understanding of chronic illness as a form of disability is vast. Many people report that this conceptual gap, and the lack of understanding from everyone - from friends...
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Ways of Working - a life story

I was asked to talk about my 'Ways of Working' recently. It turned out to be a brilliant opportunity to connect up so much of my life and my work.  Working from bed since 1996   I first developed My Ways of Working in the 90s as a student living with ME. To get around my very poor mental and physical stamina I studied part time, mostly from home, often in bed, in short bursts of concentration interspersed with rest. It may have been a strange existence, but it got me a First Class degree from a top University. However, I soon found out that I was utterly unemployable. Pigs would fly before the Ways of Working that made me a high flying student would be accepted by employers in the graduate jobs market in the late 90s. I had no choice but to claim benefits. Then, in the early 2000s the New Deal for Disabled People came along: a specialist voluntary support scheme for disabled people who want to work. “Yay”, I thought (in those days employment support providers were all ...
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ELCResearch - a new mailing list for research and coproduction

 I founded Chronic Illness Inclusion (CII), an advocacy organisation for people living with energy limiting conditions, chronic illness and pain. CII began life as a funed research project in 2017. From the start, the CII Project mailing list was about building a community of people living with chronic illness and chronic pain who didn't feel represented by existing disability or social justice advocacy organisations. Over the years I, and others, ran various surveys and consultations that gave subscribers the opportunity to have their voice heard on issues such as social policy, disability rights and healthcare services. The level of engagement and participation in research from subscribers to the CII Project list was amazing. Sadly, CII was not viable as a vehicle to continue the research and advocacy work that was at the heart of the initial research project. It was too hard to get funding. Most of all, it was not sustainable for me, as someone living with chronic illness, to le...
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