“Let's talk about my wheelchair.
“No, seriously, I want to tell you about it, because you cannot understand me unless you know about my experience.
“Bear in mind - my experience is my own and may be radically different from that of any other wheelyzoomer pirate or person with a condition you may know.
“In 2015 I became very poorly with viral meningitis. It absolutely wrecked me and I went on to have a fair few other subsequent health problems for two years after that. All of these set me back a bit more every time. It sucked, but I was surrounded by well-meant messages of "get well soon" and "how are you feeling, are you better now?"
Yoga and vitamin D will not fix it
“In 2016 I was diagnosed with ME/CFS, a condition that has long been misunderstood but one which I was incredibly lucky to even get a diagnosis for. I was lucky to even be believed. Many ME patients have been unable to stand or even interact, and have still been faced with health professionals and their social circle telling them that their problem is psychological. No, doing yoga and getting more vitamin D will not fix the fact that I cannot feel my feet or stay awake for more than four hours at a time. In comparison to most ME patients, I have received the best medical, social and educational support you can get.
“The expectation around me was that I would recover fully. And why shouldn't I? I tried so, so hard to live up to this. I pushed myself so hard on Graded Exercise Therapy that I relapsed. I relapsed so hard I couldn't stand on my feet for over a month. 2018 was a tough year, especially as I was unable to access my lectures, and some lecturers refused to be recorded, meaning that I couldn't access their content. One even refused to send me the PowerPoint content at the direct request of my tutor. On my year abroad, a teacher failed me for the whole semester because I had missed one lesson more than was allowed, due to my chronic fatigue.
Being disabled isn't remotely pitiful, but ableism is
“Being disabled isn't remotely pitiful, but ableism is. Ableism - pronounced "able-ism" - is a discriminatory action or attitude towards people who have a disability, health condition or neurodifference.
“This ableism didn't just come from other people - it also came from myself.
“Internalised ableism was me telling myself that getting a wheelchair to help me live my life would be attention-seeking and giving up on myself. It was me thinking that I should keep going out as if I was able-bodied, because that was what people expected of me and that would be me "getting my life back". I needed to "prove" that I really really had "tried". It was me choosing inaccessible accommodation because it cost less and because I "should" be better by now. I felt like being ill made me a burden.
“This was me causing possibly irreparable damage to myself by denying my disability and refusing aids that I needed to have a sustainable quality of life.
Impossible to explain chronic fatigue
“It's impossible to explain what chronic fatigue feels like until you've had it. My best attempt is this: it's how you would feel the morning after you ran a marathon that you hadn't trained for, with flu and the worst hangover of your life. Oh, and you didn't actually sleep - you were awake for 48 hours and that feeling that you get. Behind your eyes. That feeling engulfs your whole body, and sleeping doesn't make it better. That's what chronic fatigue flare-ups feel like for me. Symptoms worsen under physical and mental exertion, stress, and are especially exacerbated by infections.
“In the end, this year, after five years of feeling this poorly, it came down to this:
“Do I go on days out like an able-bodied person and have to spend a week afterwards in bed, unable to carry out basic self-care? Do I walk to my lectures, but then be too exhausted and in pain to do any of the work or carry out basic self-care? Do I make social plans but then constantly cancel to prioritise washing my clothes or doing a food shop because I don't have the energy for both? Do I turn down social, academic and career opportunities because I know I can't sustain the commitment?
“... or do I get a wheelchair?
“My wheelchair is not me getting worse; it's me getting better.
“My wheelchair isn't me "giving in to being ill"; it's me choosing life.
“It's me embracing disability for what it is - a wonderful fact of human diversity. Your life served you noodles, so you use a fork. My life served me soup, so I use a spoon. Using a fork to eat soup would be unsustainable, so I just use the right implement. It's not "inspiring", it's not "brave", it's logical. It's practical. Yikes, for the first time in five years, it's exciting.
“This year I didn't even realise that 25 November was my five-year meningitis anniversary. I didn't need to grieve for that any more. My disability is part of who I am and I love it and accept it.
“I wish people would be brave and face up to the ableism in their life - not for me, but for people who don't have the same level of support that I do. My experience of disability has had monarchical levels of privilege; my family believe and support me. I have been enabled to access my education. I will have a job. I have friends I can rely on. I have somewhere safe to live. I am not reliant on an abusive caregiver. I am able to afford my mobility aids. Many disabled people are denied these things by ableist systems and attitudes. Humans are so diverse and need different things in order to thrive. That is something to be celebrated and supported, not segregated and belittled.
“I talk about ableism not to make you feel uncomfortable (but if it does, that's a good thing! It means you learnt something) but because we can only learn from the information we've been given. It's okay if you've been given incomplete or wrong information in the past, as long as you are open to learning more, now. Lean in to that discomfort. Stick with me. I'm learning too.”
Find out more on our Believe & Achieve programme supporting young people.