Vlog competition launched

We are very excited to announce our Vlog competition.

Who can participate?

Anybody over the age of 18 who lives and works in the UK and has a disability or mental health condition.

What you need to do?

Create a 3-5 minute video about your experience of working during the Covid-19 pandemic. Within this, you choose what you talk about and how you want to present it. We do not expect professional editing. Indeed, we encourage self-filming!

We will add captions and audio-descriptions to the winning Vlogs before publishing themm to ensure that they are accessible to everyone. You do not need to worry about doing this yourself. If you want to film your Vlog in BSL, please go ahead and do so, we will also add captions and voiceover to those before publishing them.

Vlogs need to be in English.

What you can win?

The winning Vlogs will win a £100 gift voucher to a UK-based retailer of their choice and will be featured in our mini-documentary.

Entry forms are here.

LONG COVID, DISABILITY & WORK

As the number of recorded coronavirus cases in the UK approaches 2 million, we are beginning to understand the societal impact of “long covid”. This week, a study from the ONS found 20% of those infected with COVID-19 were symptomatic after 5 weeks. Nearly 10% had symptoms three months after infection. Those with severe after-effects report respiratory problems, chronic fatigue and cognitive impairments. It’s reasonable to assume that many thousands of people in the UK will be affected by chronic or reoccurring symptoms on a permanent basis.

This has sparked discussion about how existing legal protections for disabled workers may apply to those with long covid. An instructive case is the experience of workers with ME/Chronic Fatigue Syndrome. ME/CFS is an acquired condition that substantially impairs the ability to engage in activity. People living with ME/CFS have long faced stigma, discrimination and scepticism. A lack of clarity on the condition’s origins and treatments has allowed detractors (including many medical professionals) to label CFS as psychosomatic, or even invented. While such attitudes are refuted by majority medical opinion, people with ME/CFS often have to fight for recognition from GPs, employers and the state.

Online support groups created by those affected by long covid reflect similar experiences. It is common to find accounts of continuing physical and mental exhaustion which significantly impact people’s ability to live and work. Many report being misdiagnosed with anxiety or turned away from medical help due to a lack of treatment options. Many talk of losing their job or being furloughed. Because we currently lack medical and legal definitions of long covid, those with chronic symptoms are currently unable to access support and protection under existing disability legislation.

The pandemic has reinforced the structural inequalities disabled workers face. The employment gap between disabled and non-disabled workers continues to increase. 7 out of 10 of disabled people in employment report loss of earnings, furlough or redundancy as a result of COVID. Many have been denied requests to work from home. The negative economic outlook means that accommodations disabled workers are legally guaranteed will continue to face pressure. A lack of government response to these issues has perpetuated the marginalisation of disabled people in employment. The attention surrounding long covid presents an opportunity to critically examine this situation.

“ABILITY EXPECTATIONS” AND BRITISH WELFARE POLICY

Gregor Wolbring’s latest article presents a new perspective on the concept of ableism, identifying how “ability expectations” shape social hierarchies. He argues that preferences for certain abilities enable discriminatory behaviour towards societal groups who are perceived to be “ability deficient”. Powerful groups construct ability norms to portray others as physically, cognitively, or morally inferior. We see such discrimination at work in the framing of women as irrational, people of colour as less cognitively able, and disabled people as unable (for whatever reason) to participate in non-disabled society. These negative stereotypes provide justification for exclusion and violence, on both an individual and collective level.

Wolbring’s article brings to mind the rationalisation of welfare cuts over the past decade. Following the 2008 crash, the major parties in the UK agreed on the need to reduce public sector spending. This was informed by economic orthodoxy, as well as a long-term ideological goal, present across all parties, to reduce the state’s welfare commitment. The public presentation of this policy, however, took on a different face. Cuts to disability benefits were warranted because “frauds” and “scroungers”, who were able to work but chose not to, were undermining the system. This was an illusion. In 2012, fraud accounted for 0.7% of total welfare expenditure. This starkly contrasted with stigmatisation of recipients of disability benefit by government ministers and the tabloid press. Their campaign was highly effective. Respondents to the British Social Attitudes survey in 2012 estimated 34% of those receiving disability benefit were claiming fraudulently.

A decade on, welfare expenditure has shrunk by nearly a quarter. There has been a 10% cut to disability benefits, including personal independence payments (PIP). The criteria for receiving disability benefit have also toughened. Many with long-term health problems have been declared “fit to work” and cut off from support. Generally speaking, these former claimants have not entered employment. In fact, people with mental health problems are more likely to have been “shifted” from disability benefits to unemployment as a result of work capability assessments. Here we see ability expectations placing disability claimants in a double bind. After being declared “fit to work”, they enter a job market where discrimination towards disabled people remains rife, and employment opportunities are scarce (the unemployment rate for disabled people remains nearly double that of non-disabled people). As others have argued, negative perceptions of disabled people in the media, including the “benefit scrounger” narrative, contribute to this situation.

As Wolbring notes, ability expectations sort society into “haves” and “have-nots”. Those who possess desired abilities (whether actual or perceived) enjoy privileges unavailable to those without. More than this, the “haves” disdain the “have-nots”. Lack of conformity to ability norms is coded as social problem, used to justify existing social hierarchies. What is striking is how often these ability expectations are unmoored from reality, and resistant to evidence. We need only look to recent debates around disability and welfare to see how ability myths can be used to enact punitive, discriminatory policies.  

The “cost” of lockdown

Allister Heath’s recent op-ed reflects an opinion shared by a growing number of media commentators over the “costs” of further national lockdowns. In their view, increased restrictions are tantamount to economic and moral decline. Echoing the austerity era, they draw upon metrics such as GDP and national debt to tell us that we must “learn to live” with the virus, meaning a wholesale return to work and consumption. Not doing so amounts to a lack of fortitude and common sense.

This false dichotomy between the economy and public health has been widely debunked. When the virus is prevalent, consumers become more risk averse. Nations that have effectively supressed the virus have better economic outcomes. However, pitting public health against “economic health” has proved a useful for lockdown-sceptics, who present protective measures as the “the victory of fear and emotion over reason”.

There is of course the human cost. This does not escape Heath, who concedes that 20,000 lives could be saved by a circuit-breaker lockdown. But this is a price worth paying for the economic benefits. Chillingly, he recommends we “relearn to live with death”, and not display “fragility” to the type of illness our “forebearers shrugged off”. An editor of a national newspaper defending tens of thousands of avoidable deaths as the “rational” response, for perspective.  

What informs this position? The implicit understanding of Heath and his ilk that it will not be them, their family, their friends. The burden will fall, as it has already done, on those whose disability, ethnicity, class or place of residence puts them at greater risk to exposure and serious illness from the virus. Disabled women are 11 times more likely to die from COVID-19 than non-disabled women. People from minority ethnic backgrounds are up to four times as likely to die from COVID-19 than white people. Members of poorer communities are more likely to be key workers and to live in multi-generational households, both major risk factors. We may wonder how these findings inform the “cost-benefit” calculation Heath claims to be guided by.

Heath’s argument speaks of (and appeals to) a sense of social dislocation. It equates personal risk with societal risk. For those not in immediate danger, the effects of the virus can seem distant, something that can be escaped or mitigated. The tragedies and hardships happen “out there”, in private, to Others. This leads to a kind of purposeful denial, a non-recognition of the impact the virus has on vulnerable communities. As Heath’s article demonstrates, this contempt motivates scientific, economic, and moral contortions. The social and personal cost of the virus is something that many of us choose not to reckon with, because we don’t have to.

Join us as a participant in our study

We are currently looking for participants for our diary study.

What is this study about?

This research project wants to understand how disabled people experience the return to work after the main lockdown in the COVID19 pandemic. We aim to understand the lived experience of disabled people during the ease of lockdown and potential local lockdowns. The aim is to collect experience as they happen. We want to give voice to disabled people.

Who can join?

This study is open to disabled people who are currently working as employee (full-time, part-time, casual), volunteer, free-lancer or run their business. Disabled people can also participate if they intend to start work as employee, free-lancer or entrepreneur over the coming months. It does not matter if you physically returned to your workplace or are working remotely.

According to the UK Equality Act, disability is defined as any physical or mental long-term condition that impacts someone’s life. Anyone who self-identifies as disabled can join in the study.

You need to be a resident in the UK.

What do you need to do when you join?

  • You will participate in an 18-months diary study. The diaries are written online or can be voice or video-recorded based on your preference
  • Engage in group forum discussions with fellow participants. Identities are kept anonymous so you will use a user name rather than your real name.
  • We will conduct an interview at the start, follow-up interviews plus an exit interview at the end. All interviews are done via Zoom, unless participants prefer a different platform.

Other things you might like to know

Everything is virtual: The study is conducted entirely online and therefore does not require any face-to-face in-person contact.

Aim to be as accessible as possible: We aim to accommodate any accessibility issues participants might have. We will use live caption, are able to use BSL interpretations and use an online platform for the diaries that is screen-reader compatible, has dark mode and high contrast mode. The online platform works on Windows and Mac-based devices as well as on tablets and smartphones. The platform further allows for voice recordings if participants prefer recordings to typing. If there is anything esle you might need, just let us know.

Fully anonymous and confidential: Your identity will be kept confidential and except for the members of the research team lead (Dr. Anica Zeyen) and her Access to Work assistant (Emilio Costales), nobody will know the identity of the participants.

This project has acquired approval by the Research Ethics Committee at Royal Holloway University of London.

you can find further information on the participant information sheet below (link opens PDF file).

Are you interested in joining?

That is great news!! Please fill in the expression of interest form and we will get back to you as soon as possible. We highly appreciate your willingness to support our research endeavour.

embodied narratives of disability