Why Good Cause is Failing the Chronically Ill and Neurodiverse – and What Educational Institutes Sho
Part three of a three-part LUNA Project Series, by Rachael Banks and Ally Lloyd
In this article we interviewed three students and asked them about their experiences with chronic illness, neurodiversity and mental health. Through our interviews we noticed a lot of the same issues within educational institutions when it comes to supporting students in need. From miscommunication, to lack of specific needs-based support, this is why Good Cause is failing its chronically ill and neurodiverse students.
For Noor, an undergrad studying Psychology at Glasgow University, coping with University ‘continues to be a worry for me even now being in my final year.’ Noor has a specific learning disability called dyscalculia and mental health issues. ‘Having major depressive disorder, anxiety and an eating disorder. A flare up of one or all 3 can be unpredictable and can last quite a long time. I have recently required inpatient care for a month and had to take time off my third year. I was very close to dropping out, but the School of Psychology was incredibly helpful and allowed me three extra months (basically the whole summer) to catch up with anything that I have missed when I was ill.’ In spite of the support she has received from individuals in the School of Psychology, she still worries that due to the lack of procedure when it comes to neurodiverse individuals, ‘that something like that would happen again and I wouldn't have the courage to be open and honest, seeking help from the relevant bodies.’ This concern is prevalent in many of the interviews that Ally and I have carried out. Lack of communication is endemic within Educational institutions. We’re not talking about lecturers taking on the role of counsellors, as is often the case due to the systemic failure of support systems in educational institutions: ‘the lecturers at the school of psychology [were] ... nothing short of incredible’. We’re talking about systemic reform to ensure that information is shared correctly across institutions in order to hold Universities responsible for the welfare of their students. We cannot place the onus on educators to support those in need; there needs to be an established system in place for people with chronic illnesses for both the psychically disabled and neurodiverse.
Noor explained to us her concerns: ’I was comfortable sharing things with one lecturer and because I was able to be open and honest. However, the fact that the Good Cause system excludes chronic illness is something that has to be improved upon in my opinion. I had to provide extensive documentation of my hospitalisation/sectioning papers just to make sure that it is a clear 'flare up' in my chronic illness.’ The necessity to ‘prove’ your illness is one that, in the current handling of information, Noor believes is ‘not really necessary and quite stressful when you're at a very low point in life.’ Navigating the Good Cause system, a system that does not accommodate the chronically ill, is rather demoralising, especially when you are in the thick of it. The lack of inclusion is alienating, and incredibly frustrating when you are trying to look after yourself. When I was diagnosed with Cancer, I was told to upload a doctor’s note describing my diagnosis and justifying that due to my treatment of chemotherapy, I would be unable to sit exams due to drowsiness and sickness. Not only is the Good Cause system archaic and desperately in need of improvement technologically, as I had difficulty inputting my information into non-existent boxes, the fact that I was more or less left to figure it out by myself was incredibly stressful during a time of need. The Good Cause system is not built to accommodate the chronically ill, and as Noor summarised perfectly, it feels like your ‘good cause is only valid if [you] hit crisis, because otherwise, [your] conditions are considered ‘chronic’ or ‘long-lasting’ and thus, not so hard to juggle alongside University commitments.’
Marina, a 3rd year Medical Student, registered for Disability services for Bulimia but in the end deregistered ‘partly because [of] internalised stigma’. I personally experienced something similar in this regard. I was referred to the Disability service, but never took them up on it. I wasn’t disabled, and when I looked on the website for what services they provide, none of it applied to be. Because I wasn’t disabled. I was chronically ill. The fact that support is not specific and does not differentiate between the chronically ill, the disabled, the neurodiverse and those who have mental health issues, exemplifies an area within education institutions that does not need to be standardised. It alienates people from the support mould and discourages them to seek help. If you want help, the current system ‘relies on you reaching out and saying you're struggling, and then that's tricky because even the fact that you're doing that means that you're self-aware and therefore they assume it can’t be that bad’. For someone to be able to seek help is a big step, and if the services aren’t there and easily recognisable as the support they need, and most importantly, accessible, this can confound the sense of isolation felt by the chronically ill, disabled and the neurodiverse within these institutions. Marina explained further that ‘they are kind of only interested in helping you survive rather than thrive.’
Ellie is also a Psychology student at the University of Glasgow and is Dyslexic/Dyspraxic. Ellie explained her diagnosis to us: ‘Dyslexics are challenged by the processing of information related to reading, writing and spelling, while dyspraxics have difficulty processing information related to movement and coordination, but also the planning and undertaking of motor movements.’ Having only been diagnosed at 18, Ellie has experienced the many faults of support systems in education. When she was 15, her school’s Special Education Needs department ‘refused to test and support [her].’ ‘Alongside all the other social and academic pressures of being a teenager, it took a massive toll on my mental health. I struggled to understand “what I was doing wrong”, why I couldn’t meet others’ expectations despite my very best efforts, and why I was experiencing flashes of what seemed like Dyslexia, when I was told it couldn’t be. I grew up in a small town, with a small, resource-stretched school. I rationalised then that by coming to uni I could find support here, or in the city, where all the resources were.’
When Ellie started University, she got in contact with the diagnostic services through the university’s educational psychologist, however she noted that she ‘was surprised to find that support from the disability service wasn’t automatic but something [she] had to initiate after a couple of months into the semester without active support.’ ‘ I got a disability advisor eventually, and disabled students allowance to get assistive technology (e.g. Text to Speech, Dictaphone pen). But I don’t think I fully understood what would be helpful for me at first, and so many of the provisions I now frequently use I didn’t engage with until about a year into Uni.’ The lack of personability is rife within the support system for the chronically ill and neurodiverse; there are certain standardised resources available, but no sense of a personable support network in place. This means that often the onus is put on staff to make up for what the support system lacks. Ellie told us ‘When I played on the uni women’s rugby team, one coach in particular took extra time to work and go through things until I didn’t think sport was so impossible anymore.’ This again, unfortunately, is a common theme, as Marina told us ‘Individual lecturers have been wonderful and such a support and I can’t thank them enough.’ ‘But also, it’s not their job! They are already busy and overstretched!’ Not only are education institutions failing their students but putting pressure on their staff unnecessarily.
It’s time to invest more time and money into the support of all students in education. Rather than flouting performative gestures such as mental health awareness week, handing out leaflets and holding bake sales, why not bring some of that awareness to the support networks provided? Awareness is important, but why make people aware of mental health, chronic illness and neurodiversity, if you don’t have the means to support those who experience it.