This blog was kindly contributed by Lorna Cosgrave, a third year History undergraduate at Durham University.
Before July 2020, many people had not heard of Chronic Fatigue Syndrome (CFS), also called Myalgic Encephalomyelitis (ME). However, it has increasingly been brought into the public forum as the condition has become a frequent consequence of contracting Covid-19.
The NHS defines Chronic Fatigue Syndrome, also known as ME/CFS, as a condition that causes extreme tiredness as one of a long list of other symptoms ranging from nausea and headaches other conditions, such as Joint Hypermobility Syndrome or Ehler’s Danlos Syndrome, which cause severe joint problems.
It is still unknown what causes ME/CFS. For some it is an infection that devolves into the condition. For others the onset is entirely random. Overnight, people can go from able-bodied, to disabled.
Action For ME estimates that around 250,000 people in the UK suffer from ME/CFS, and over 17 million people worldwide. This number will only increase if Covid-19 is leaving people with ME/CFS as studies are suggesting.
Many with ME/CFS find higher education inaccessible, meaning that their voices are rarely heard and as a result there are few perspectives available to learn from. However, both my sister and I have ME/CFS and each of us have starkly different experiences of higher education.
Although we both found higher education incredibly difficult to reach, I was privileged enough to enter Durham University in 2018 through their Supported Progression programme. My sister Ella, however, was left adrift without any education from the age of 16. She has always been a promising student, with a photographic memory and consistently coming top of her year. However, at our secondary school there was a distinct lack of understanding surrounding our conditions. Ella dropped out, unable to complete her GCSEs and I completed mine in a wheelchair after being bed-bound periodically for the prior six months.
I have found that Durham University has been incredibly accepting of my ME/CFS. I must admit I did not expect people to have even heard of it, but in my experience some have and some even understand the severity of it. My department has been willing to give extensions and record lectures. Disabled Students’ Allowances have made my life easier with a chair that makes me sit in a way that will reduce my fatigue and with computer programmes such as Read&Write. Nevertheless, university has been a struggle, but I am still there, which is a victory I treasure.
I am an asset to my university averaging a 2:1 and having held various positions on executive committees, as well as assisted in the foundation of a society and am currently heading up a personal development programme for students. Disabled students are an untapped potential, yet we struggle to receive these life-changing experiences at top universities.
My sister, Ella, has had a much harsher experience than me. She has lived through a multitude of disabilities in her life and is now 18. She has not received proper education since she was 14 when she had to drop lessons, meaning she only took French and History as her GCSEs alongside her core subjects. School was so overwhelming for her that she regularly resorted to hiding in the disabled toilet to get some form of quiet. The Special Educational Needs (SEN) department never allowed her to rest during breaks, pushing her to socialise or complete extra work, meaning she would collapse from exhaustion by the end of the day. After attempting to ignore her disabilities, her school sent her to a Home Hospital unit, refusing her access to online learning, saying it was only for ‘serious physical health conditions’.
Ella dropped out of Home Hospital after they would ‘surprise’ her with exams she did not sign up for, meaning she did not receive any GCSEs, as they had only handed her Foundation courses. Assessments are particularly difficult when suffering from ME/CFS, as it can cause severe crashes during the exam and you can become exhausted to the point where writing seems impossible. For me during exams my joints are particularly affected. In A-Level History, I dislocated my finger, relocated it, nearly passed out and then carried on.
Access needs to be easier for disabled students. Ella had been resigned to never possessing a qualification. It was in fact the opportunity to share her experience in this blog that inspired her to write a personal statement and a CV, sending it off to several universities. I am delighted that she has an accepted an offer from the University of Wales, Trinity St David to study Liberal Arts (with a Foundation Year), who have already offered her a number of ways to manage her ME/CFS as a distance learner.
Universities have made great leaps forward in their support and understanding of the variety of experiences for students with disabilities, but they must redouble their focus on access. As a disabled student, universities are intimidating institutions. In retrospect, I could have applied for Oxbridge, but I only considered universities where I was eligible for extra support through access programmes: Durham, York and Newcastle. Ella did not consider universities at the top of the league tables and was terrified of rejection, of which she received plenty.
Ella should have received qualifications, or online learning at a minimum at secondary level. This years’ fiasco with exams has demonstrated that pupils can be allocated their predicted grades; under normal circumstances, predicted grades as a measure should be applied to disabled students if exams are inaccessible due to their condition. Universities and students will miss out unless there are structures which recognise that often formal assessment systems isolate and exclude disabled students.
My recommendation is that the sector establishes a multi-university access programme, specifically for disabled applicants. Applicants with disabilities could access advice and tailored support when entering the UCAS process. This should be paired with encouraging universities to give out contextual offers, in exchange perhaps for a piece of evaluated coursework to prove academic talent.
I am inspired by the strength of these two women. For too long those with disabilities are not provided with the access mechanism to attain. This should never be allowed. I hope other institutions will learn by the example of Durham & these incredible women.
Brilliant blog Lorna, thank you so much for sharing your and your sister’s story to help people understand the impact a chronic fluctuating condition can have on education. We are campaigning for universities to make contextual offers to disabled students when appropriate here in Scotland, have a look at our change.org page and feel free to get in touch if you’d like to discuss further. https://www.change.org/p/make-access-to-university-fairer-for-disabled-people