Chronic fatigue and university support for disabilities

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We should not shy away from the fact that universities are an ableist working environment with the university’s mythical and illusionary expectations of a perfect academic worker with exceptional performance.

The reality is that talent is talent, and every diverse group of academics bring something to the table and contribute to their universities. If you have seen one physically disabled person, you have walked by four disabled persons with hidden impairments that you have not seen. Undoubtedly, most of us would have been taught and supported by our outstanding disabled academics that have contributed to our learning and career progress without knowing they are disabled. This systemic, mythical, or illusionary expectation has produced maladaptive working behaviour that is detrimental to health and wellbeing. To mention a few, this includes overworkingleaveism and acquired impairments such as increasing cases of mental health conditions and chronic fatigue among academics. The data suggests universities fail to support disabled academics or accommodate for their impairment effects, especially those living with chronic conditions.

The problem is that there is little or no knowledge on how to respond to the embodied experience of impairment effects and disclosed disabilities amongst disabled academics who are living with chronic fatigue ill-health or conditions. In this short blog, I shed light on impairment effects, chronic fatigue ill-health and recommend potential accommodation for impairment effects in university working life.

Impairment effects (IE)

Impairment effects are the undeniable and unavoidable lived experience of impairment for many disabled people – especially those living with chronic fatigue ill-health. The term IE was coined by Carol Thomas in her Social relational model (SRM) of understanding disability. To illustrate, I will refer to the following statement from Brown and Leigh’s recent work last year which echoes the relational aspect that sustains disability in organisational structure/culture and the embodied lived experience of impairment effects for many disabled people or academics living with chronic conditions. As stated, “my relationship with society changed once I disclosed my disability and my impairment does have an effect on me” (p.134). This explains the reality of many disabled people or academics living with chronic fatigue ill-health through the lens of SRM.

Across many universities in the UK, disability is medically managed as a problem with performance expectations. For this reason, disability management is a case of approach (fight) or avoidance (flight) for many academic institutions. The reality in practice is that disabilities, particularly hidden impairments, are avoided in universities, regardless of the policies and less practically effective Equality Act (2010). Further, disabled academics’ needs are hardly met because disability denotes slowing down in workaholic organisational culture such as universities. Besides, the lack of disability inclusion and literacy places the needs of disabled academics at the back of management priorities where disability needs are hardly recognised let alone discussed. Hence, disabled academics must negate their impairment effects from impacting their work and incorporate their work activities such as workload, work patterns, and responsibilities. To be fair, disability inclusion is now receiving attention from some research funders and universities, for example, recent research funded by the Engineering and Physical Sciences Research Council (EPSRC) known as Disability Inclusive Science Careers. However, there is still a long way to go in making the university more inclusive and accessible for disabled academics – especially those living with chronic fatigue ill-health.

My ongoing doctoral research reveals novelty findings that require the attention of universities in line-managing or supporting disabled academics. The participants in this research such as line managers, Human Resources and University College Union (UCU) reps who support disabled academics express their perspective of psychological contracts (i.e., the unwritten expectations) to disability disclosure as a barrier to available support for disabled academics. While this unwritten expectation remains unaddressed, it is not a surprise that impairment effects also remain a barrier for many disabled academics living with embodied hidden impairments such as chronic fatigue ill-health.

Chronic fatigue

Chronic fatigue, as a symptom, is brutal and it is a long-lasting (primary or secondary) symptom that is experienced across different chronic ill-health such as Myalgic Encephalomyelitis or chronic fatigue syndrome (ME/CFS), fibromyalgia or Multiple Sclerosis (MS) and more. The causes of chronic fatigue remain unknown and its symptoms of debilitating exhaustion and energy limiting experience can last over 6 months. Irrespective of the severity level, having to self-navigate working life with such health conditions in ableist institutions (e.g., universities) that foster able-bodied academics and give little or no attention to understand chronic conditions is undeniably difficult for many disabled academics. Chronic fatigue or fatigue in chronic conditions is different from everyday fatigue and it is largely misunderstood. Living with chronic fatigue ill-health include but are not limited to being called lazy, disbelieved, being told it is all in the head or they are faking it. Ironically, if they are faking anything, it is their wellness, not their ill-health (or impairment effects). These misconceptions are worse than ignorance and need to be binned to embrace effective and efficient disability support that would make a difference in the working experiences of disabled academics.

Supporting impairment effects for disabled academics

As we gradually move to post-COVID working life, we know that COVID-19 restrictions have shown that many employees are productive working from home and it has made many disabled academics feel more included as everyone is working remotely from home. In IBM’s study of 25,000 employees, 75% preferred working remotely at least occasionally and 54% preferred remote working to be their primary way of working. Inevitably, remote and hybrid working have come to stay and should be embraced and normalised as an inclusive mechanism to support disabled academics – especially those living with chronic fatigue ill-health, given that long COVID (beyond 4 months) is post-covid myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) [4 Mb PDF].

To conclude, here are some recommendations to consider when supporting impairment effects to meet the needs of disabled academics who are living with chronic fatigue ill-health to foster inclusivity, and a healthy and more productive working experience. While this blog post focuses on chronic fatigue, much of the advice can be generalised to other disabilities:

  • Universities should explicitly express and signal disability support including the benefits of disclosing disability to encourage disabled academics to be more open with their impairment effects (just like phoning in sick when we have a bug).
  • Provide university leaders with sufficient information to proactively manage a diverse workforce, tailored disability support towards needs and ensure disabled academics are not managed as a problem of absence or performance (or a person that must be fixed).
  • Personnel with responsibilities of supporting disabled academics living with chronic fatigue should ask their disabled academic colleague how to best support their needs to allow bespoke (or person-centred) accommodation and adjustment.
  • Universities should recognise the preferences in flexible working. Some disabled academics living with chronic fatigue may prefer to work from home because they are close to their bed when they feel they need to lie flat for some minutes and come back to work. On the other hand, some may prefer to work at the workplace office in person. An ergonomics chair or bed in the office could make a significant difference to accommodate the impairment effects and do not misconstrue this as sleeping on duty. It is not.
  • It is important to take time to listen to understand (not to respond) rather than reacting fast whenever you are responding to disclosed disabilities.
  • Universities that prioritise equity and inclusion of disabled academics should not disbelieve, trivialise, or delegitimise their impairment effects, or lived experiences of their impairments.
  • Personnel supporting disabled academics should be aware that disabled academics living with chronic fatigue could experience brain fog during conversation and it is important to allow space (or silence) to ensure the train of thoughts is on the track, not derailed.
  • It is important to acknowledge that academic work is not 9-5 work and to encourage/enable flexible workload and working hours.
  • Provide support with paperwork and, if possible, minimise paperwork altogether for disability support.
  • Universities should foster compulsory disability training for all personnel supporting disabled academics.
  • Universities should pay attention to the unwritten expectations (psychological contract) between employees and employers across the HR process (e.g., from recruitment, selection, onboarding, retention, and performance evaluations) when supporting disabled academics.
  • Lastly, it would be useful for personnel supporting disabled academics to join or work collaboratively with the trade unions representing academics such as University and College Union (UCU, UK) and The Educational Institute of Scotland (EIS, Scotland).

Author Bio: Olugbenga [Abraham] Babajide is a doctoral research student at Heriot-Watt University in Edinburgh.

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