Guest: Professor Bethan Evans

My guest today is Bethan Evans, Professor of Human Geography at the University of Liverpool. Bethan and her colleagues are doing really interesting research on the experiences of academics who are navigating working in academia whilst living with chronic health conditions.

In her paper titled "Being left behind beyond recovery: ‘crip time’ and chronic illness in neoliberal academia" and in her work on the Exhaustion Economy, Bethan and her colleagues argue that ‘crip time’ is a useful lens through which to frame the cognitive, psychological and emotional struggle of academics living with energy limiting conditions.

We talk in detail about the structural particularities of academic work and what makes it especially inhospitable to people living with chronic conditions. But we also discuss the way it's possible to adapt and find sustainable ways of working.

This is a timely conversation given the parlous state of DEI discourses in the world of work. So, I am grateful to have this opportunity for a more nuanced discussion about the importance of accommodating bodies of all kinds into the workplace.

References:

Evans, B., Allam, A., Bê, A., Hale, C., Rose, M., & Ruddock, A. (2024). Being left behind beyond recovery: ‘crip time’ and chronic illness in neoliberal academia. Social & Cultural Geography, 1–21. https://doi.org/10.1080/14649365.2024.2410262

https://exhaustioneconomy.uk/

Kafer, A. (2013). Feminist, queer, Crip. Indiana University Press.

Mingus, M. (2011, May 5). Access Intimacy: The Missing Link. Leaving Evidence. https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/

Samuels, E. (2017). Six ways of looking at crip time. Disability Studies Quarterly, 37(3), Article 3. https://doi.org/10.18061/dsq.v37i3.5824

Chronic pain is pain as one of the most prominent causes of disability worldwide. In England alone, around 15.5 million people (34% of the population) experience chronic pain and about 12% struggling to take part in daily activities, including work.

When we think about the impact of chronic pain on our ability to work, as researchers we’ve tended to measure the direct effects on productivity in the workplace, but for people living with persistent pain the qualitative impacts extend far beyond this.

My guest today is Dr Martin Stevens, a research fellow from Leeds University. He and research colleagues at Aberdeen University have been exploring how we can better understand the impacts of chronic pain in the workplace. QUantifying the Impact of Chronic pain on engagement in paid work, or The QUICK Study for short, is a research project that has worked closely with people living with chronic pain to develop a survey instrument that captures the multi-dimensional impacts of pain at work.

From the fluctuating nature of pain, to impaired cognition, to disclosure and support for job modifications, to the effects on stamina and the ability to recharge – this work is arming researchers with a finely tuned instrument to tell a more robust story about the impacts of chronic pain at work from those who experience it first-hand.

Our conversation also highlights the importance of involving people with lived experience into the research process from the ground level. Patient and Public Involvement (or PPI), as it’s known in the UK, has become a requirement of public funding for healthcare research, but the complexities of how we do this work as researchers is not something we hear discussed so I was glad we had the opportunity to talk in-depth about this process.

Links

https://www.abdn.ac.uk/iahs/academic/epidemiology/our-research/studies-list/quick/

https://academic.oup.com/occmed/article/74/Supplement_1/0/7707348

https://journals.lww.com/pain/fulltext/2024/07000/do_current_methods_of_measuring_the_impact_of.7.aspx

https://medicinehealth.leeds.ac.uk/staff/12305/dr-martin-stevens

https://bsky.app/profile/martstevens.bsky.social

HOST: Peter Ghin

Guest: Catherine Hale (Researcher, Kings College London)

On this weeks pod I speak with the ever-erudite Catherine Hale about the research she is leading at Kings College London which explores the barriers to designing flexible jobs for people with disability - specifically people with fluctuating energy limiting conditions (FELCS).

This conversation packs a punch. We dig beneath the high-level discourses of inclusion and the social model of disability, to understand what the research reveals about the practical obstacles to creating what Catherine calls - FlexPlus Jobs. This translates to real flexibility about how, when, and where work can be done.

We also unpick the potential downside of job flexibility, particularly the erosion of security that can come with ‘piecework’, and the problematic nature of over-hyping disability entrepreneurship.

REFERENCES

https://www.kcl.ac.uk/research/flexible-job-design-people-with-fluctuating-disabilities

https://www.kcl.ac.uk/can-flexible-job-design-help-people-with-fluctuating-disabilities

CONTACT

[email protected].

As we're still in our summer break here in the Southern Hemisphere, I thought I'd share a fantastic podcast I recorded some time back on our sister podcast, Work.Work.Work. I hope you enjoy!

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Are you exhausted? Well join the club! But imagine if that exhaustion wasn’t only a by-product of living in our modern times, but a physiological response to a multi-systemic illness that severely curtails your baseline energy levels. In today’s episode, we explore the world of chronic illness, particularly conditions like long-COVID, fibromyalgia, lupus, and ME/CFS, to better understand their impact on people’s capacity to work. 

We discuss the inadequacy of terms like ‘fatigue’ or ‘exhaustion’ to describe the experience of working and living with what one of our guests has termed ‘energy limiting conditions’, and what we think about as the great unnamed energy crisis of our time. We also discuss how organisations can create inclusive workplaces that are welcoming for employees of varying capacities and abilities. 

Host: Dr Peter Ghin

Guests:

Catherine Hale: Head of Consulting, Astrid/Founder, Chronic Illness Inclusion

Dr Jo Ingold: Associate Professor, Management, Deakin University

Ilena: Managing Director, start up

Mentioned:

2023: The state of the future of work 

Astriid

Energy impairment and disability inclusion

How flexible hiring could improve business performance and living standards

The business leaders hiding chronic illness 

My guest today is Dr David Maidment, senior lecturer in psychology at Loughborough University, UK. David's research focuses on developing interventions that aim to improve physical health and psychological wellbeing in adults with long-term conditions and disabilities.

I speak with David about his NIHR funded research project which explores how people with long-term health conditions can be supported by organisations to co-manage their health at work.

We unpack the concept of 'co-managing' and how it can be useful way to frame the intersection of self-management and employer responsibility for employee health.

I hope you enjoy our conversation!

REFERENCES

https://www.affinityhealthatwork.com/co-manage (Beta Co-manage tool)

NICE guidelines - Workplace health: support for employees with disabilities and long-term conditions

NHS Strategy - Growing occupational health and wellbeing together: our roadmap for the future

CONTACT

[email protected].

Sheila Kissane is the founder and CEO of the Cambridge-based healthcare start-up venture Boutros Bear which works with individuals and employers to provide rehabilitation programmes for people with cancer, chronic pain, menopausal symptoms and mental health conditions.

This is the full interview of my recent conversation with the dynamic Sheila Kissane. Check out our podcast feed for a shorter, edited version of our conversation.

References:

Boutros Bear

Cancer Costs A ‘ripple effect’ analysis of cancer’s wider impact

Contact: [email protected]

Sheila Kissane is the founder and CEO of the Cambridge-based healthcare start-up venture Boutros Bear which works with individuals and employers to provide rehabilitation programmes for people with cancer, chronic pain, menopausal symptoms and mental health conditions.

We cover a lot of terrain in this conversation, from what it takes to create a healthcare start-up while living with in the midst and in the shadow of a breast cancer diagnosis, to the challenge of scaling personalised healthcare for the employer market.

I loved this interview so much that I’ve also made a full edit of my conversation with Sheila available on the podcast feed. It’s really worth a listen, it’ll warm you heart and make you think. 

References:

Boutros Bear

Cancer Costs A ‘ripple effect’ analysis of cancer’s wider impact

Contact: [email protected]

Host: Dr Peter Ghin

Producer: Cultural Value

Today I chat with the delightful Yeliz Prior. Yeliz is a Professor of Clinical Rehabilitation at the School of Health and Society at Salford University in the UK

Yeliz’s research explores the effective management of rheumatic and musculoskeletal conditions in the workplace and the use of digital health technologies to enable wider access to health information, diagnosis, treatment and self-management. As you’ll hear, Yeliz’s research is informed by her lived experience of axial spondyloarthritis and she talks through her own process of being diagnosed with the condition. 

We talk about the impact MSK conditions can have on people’s daily life and their capacity to work. We focus her and colleague’s research as part of the Work Well trial in the UK, which is a randomised control trial which is looking at the efficacy of occupational therapy interventions in supporting people to better manage their conditions and remain in employment.

References

WORKWELL trial

The WORKWELL trial (research protocol)

WORKWELL Digital

VERSUS Arthritis

Reach out to us at [email protected]

Host: Dr Peter Ghin

Producer: Cultural Value

My first guest on the podcast is Kim Hoque. He’s a professor of Human Resources Management and Vice Dean (People and Culture) at King’s Business School in London. Kim is also one of the UK’s leading scholars on disability and employment. In 2013 he co-founded the Disability@Work research group and in 2021, along with leading charities and trade unions, he co-founded the Disability Employment Charter.

I speak to Kim about the process of establishing the disability charter but we kick off our conversation by talking about his latest research into the effectiveness (or rather ineffectiveness) of the UK Government’s Disability Confident Scheme. His research offers a pretty scathing assessment of a national accreditation system that is supposed to help level the playing field for workers with a disability but which, in reality, does little to lower the barriers to employment or move the dial forward when it comes to closing the disability employment gap.

References

Disability at Work Research Group

Disability Employment Charter

Disability Confident Scheme Research

Email us at [email protected]

Host: Dr Peter Ghin

We're excited to launch our little podcast which explores life at the intersection of chronic illness/disability and work! The first season of Bodies @ Work showcases interviews with researchers and other stellar guests, who are doing super interesting work to understand the impact of disabling health conditions in the workplace, and what we can do to achieve better outcomes for employees and their employers.

So whether you’re researcher, a public policy person, a health practitioner, an employer, an advocate, a person with lived experience of a disabling health condition, or all of the above, we hope this podcast informs, entertains, and broadens your mind about an issue that effects millions of workers (and the people that employ them) all around the world.

This podcast is produced by Cultural Value