Here Abraham shares his research on disability within academic careers, particularly, experiences of Chronic Fatigue Syndrome/ME. Abraham is hoping to speak to those with lived experience of supporting colleagues living with CFS/ME, and his contact details can be found at the end of this blog post
As part of my PhD research, I have started interviewing universities staff mainly in Scotland (e.g., research leaders, HR, PhD supervisors, line managers etc.,) with experience and responsibilities for supporting disabled academics or academics living with long term ill-health such as chronic fatigue syndrome (CFS/ME). I am also speaking to academics with lived experience of CFS/ME or related (comorbid) conditions across the UK universities. Given that disability is a personal and sensitive topic to discuss, particularly hidden disabilities which are hardly disclosed due to personal reasons or non-inclusive working environment, I am humbled and grateful for the interest shown and positive response to taking part in this study, as part of the evaluation of the DISC project. I am keen to speak to more academics with lived experience of supporting colleagues living with long term ill-health (i.e., CFS/ME) as well as academics living with CFS/ME in the UK. If you are happy to inform this work (in full confidence), please do not hesitate to contact me via my email which can be found at the end of this blog post. I am in the very early stages of analysis and I would like to share emerging findings from our ongoing research that aim to improve support for academics living with long term ill-health and enhance line management of disability in the higher education.
So far, findings from our ongoing research reveal that university staff with experience and responsibilities for supporting (or line managing) academics colleagues living with long term health conditions such as CFS/ME perceived the dilemma of disclosing disability as part of the issue hindering effective disability inclusion for disabled academics in universities or higher education. Despite their willingness to support colleagues, the reluctance of disabled academics to disclose their hidden impairments was perceived to hamper efforts to inclusion. This reluctance was attributed to two key themes. Firstly, a lack of an anticipatory or proactive mechanism to encourage disability disclosure for academics and secondly the ineffective traditional reactive support (via HR and Occupational Health) even when an impairment is disclosed. Participants reflected how support for students is more proactive and anticipated than disability support for academic staff.
It emerged from the data that the issue with disability disclosure is consistent with an internalised barrier that results into self-exclusion from academic career while the limited understanding of disability and impairment effect (i.e., the experience of impairment) in line management of academics with long term ill-health is consistent with the institutional barrier (e.g., line managers limited experience or lack of knowledge) due to lack of disability awareness or specialised training.
The majority of our participants reported that their experiences with hidden disability are more with supporting academics who live with mental health conditions (e.g., depression) but have little or no experience with managing academics living with chronic conditions such as CFS/ME in university. So far, none of our participants reported direct or formal working experience in line managing or supporting academics living with chronic conditions such as CFS/ME. A consistent theme within the data is the lack of confidence research leaders and line managers feel in supporting disabled colleagues due to a lack of training and disability literacy.
There is a need for research of this nature for disability inclusion in universities, particularly with disability awareness training. This will help enhance disability literacy and trusting relationship in line management of disabled academics or academics living with long term ill-health. There is poor disability management in universities and hopefully, this doesn’t incur a detrimental cost (see NatWest/RBS example) before universities start embracing change in their organisational culture to improve disability inclusion. This research is helping to keep disability in the conversation, to communicate the underlying issues in disability management and also providing the opportunity to make universities a more inclusive working environment. Not only for academics living with chronic conditions or long-term ill-health (e.g., CFS/ME) but also for everyone because disability is part of being human. As participants reflected, within high workloads and limited resources, such inclusivity is difficult to achieve.
In my view, effective disability management can be more cost-effective than poor disability management which can incur reputational and financial damages. Why not be a part of the change we all want to see?
So, if you are supporting academics including PhD students with disabilities or long-term health conditions such as CFS/ME or related (comorbid) conditions and you are happy to share your experience in full confidence? Please, follow this link to take part https://hwsml.eu.qualtrics.com/jfe/form/SV_3VnWCrDXCgnVLmJ
If you have lived experience of hidden impairments such as chronic health conditions including CFS/ME I would love to hear your experiences (in full confidence). Please, don’t hesitate to contact Abraham (oab1@hw.ac.uk) to help inform this work with your valuable experiences in any shape or form.
