Sitting in Starbucks one afternoon, Bethany Dawson and myself chat about a whole variety of different things. She admits that she felt most of her first year at the University of Surrey was spent being angry at stuff. In other words, being very politically active. On top of being a Sociology and Politics student, she also took part in an occupation of the chancellor’s office in support of the UCU strikes and obtained a position in the support zone for the Students’ Union. I ask if she hopes to be prime minister one day, and she responds by jokingly telling me that she’d probably start crying due to the pressure of being a politician and if that didn’t work for Hillary Clinton, then it won’t work for her. Instead, she’d much rather be behind the scenes, possibly going into policy research for areas such as welfare or disability.
Yet, despite these ambitions, Bethany experiences chronic fatigue. Therefore, whilst she wants to do even more, her on-going tiredness and exhaustion impacts her daily life. Although you probably wouldn’t realise upon meeting Bethany that she has a disability, and that is why we use the term ‘invisible’, as her disability is not obvious when looking at her outward physical appearance.
So, what exactly is Bethany’s disability? In her own words, “it is really confusing”. Essentially she has arthritis, however, a more detailed description is that she has inflammatory back pain that doesn’t show up on MRI scans or X-ray. Her doctors were only able to diagnose her inflammatory back pain by giving her steroid injections into her Sacroiliac joint (“which was horrible”) because inflammatory pain responds to steroids, and Bethany responded really well.
On top of her inflammatory back pain, at the age of 13 Bethany began experiencing painful stiffness when awaking from a nights sleep. Throughout the day the stiffness would subside, but only to recur again later at night. Whilst her pain mainly resides in her lower back, often she feels it in her hips, knees and shoulders. Generally, this doesn’t hold Bethany back from doing things; she just goes at her own, slower, pace. Going at a slower pace also means that although she enjoys occasionally going to the gym, team sports are a struggle for her, due to the expected commitment to attend regular practice sessions. She just can’t commit, as some days her chronic fatigue and stiffness could be worse than other days.
“I can’t keep awake throughout the day,” she says to me. “It’s basically like everything you do is more effort. I’m writing an essay at the moment – everyone who does my degree has to do it. It’s not necessarily harder for me, but I take a lot longer to write the essay because I need to nap too. Even going to class, its a lot more effort to get up and go. I just feel a bit stuck. It feels almost like (this is gross) you have lots of glue in your joints. So I can do things, I just have to push.”
People without an invisible disability can be frustrating too. Bethany finds that “a big thing is [non-disabled people] not respecting how hard it can be.” Luckily Bethany’s condition, arthritis, is relatively well known, unlike some of her friends who have lesser-known conditions. As her friends’ conditions are less understood by other people, and are not obviously visible, they often receive comments that downplay how ‘bad’ living with the condition really is. For Bethany, it can be frustrating when people don’t take her pain and fatigue seriously. Yes, she still manages to do things and, yes, she can get up and walk around, however this is aided by medication and a brave face; it doesn’t mean that the pain is gone.
The feeling of pain is a personal experience, not something visible and objective. Bethany believes it is a lack of awareness that causes the shortage of empathy towards people with invisible disabilities. “I think disability is seen as you either have to be old, or in a wheelchair and I’m neither. I struggle through, but I know if I had a walking stick people would understand that I’m disabled. I have a badge that was made by the TFL (Transport for London) that says: Please offer me a seat. What it’s meant to do is alert to people that I have a medical condition and I need to sit down but really it makes people think I’m pregnant. I’m happy to talk about my disability, but sometimes it’s a bit like, I can be ill and not pregnant.”
Health and disability (both visible and invisible) need to be spoken about more. Once that dialogue is started, it will facilitate a process of awareness. Non-disabled people in general need to make an effort to try and understand what it means to be in chronic pain or what it’s like to possess a disability. Bethany might then be able to use her TFL badge on the tube without people automatically assuming she is pregnant, and instead be more aware to the fact that she could be ill and needs accommodating in that respect. Besides, there is no harm in educating ourselves and understanding what arthritis is and how it can impact someone’s day-to-day life. Then it might make it easier to help an elderly person you know or a classmate with the same or a similar condition.
On the other hand, should we even use the word disability? Is it useful? The usage of the word disability is debated inside and outside of the disabled community, with no right or wrong answer as to whether it is beneficial. In Bethany’s opinion, the word disability is not a bad word, but it can be unhelpful, especially because it is just so broad. She would define disability as, “a long-term ailment that impairs physical, mental or educational opportunities/abilities.”
Still, there are people who believe using the word disability is oppressive, but for Bethany, as her brother has Downs Syndrome, she has witnessed the benefits it has had for him, as well as for herself. For example, if you say you are disabled, you are more likely to get your particular needs catered for. Bethany was able to obtain ground floor accommodation at university by identifying as disabled, as she can’t always face the stairs.
Perhaps using the word disability shouldn’t be condemned, but instead collectively opened up by society to define more than the stereotypical ‘person in a wheelchair’.
“The idea of ‘disability’ isn’t the issue,” Bethany says, “It’s the treatment of the term that needs to change.”
Watch Bethany's TEDx Talk, 'Taking the 'Invisible' out of Invisible Illnesses', here: