From Defined to Defining: Why I Struggle with ‘Disability’

By Catherine Perkins, First Year Classics with Archaeology and Theology.

With thanks to the college, and the disability support reps for all their support and advocation for equality of opportunity.

Exactly one year ago today, I was admitted into intensive care in Gloucester Royal Hospital, and given a life changing diagnosis, that I was a type 1 diabetic. I probably had been for quite some time, given the critical state I was in, but, remarkably, it had gone unrecognised. In a matter of moments, I went from being what I thought was a fairly normal teenager (although that in itself is, of course, up for debate!) who was feeling fairly ill, into a vulnerable being that was prodded and poked, stuffed with lines and drips, and had its neck cut open to insert a jugular catheter. I felt dehumanised.

The ICU doctors were the first to tell me that I now classified as ‘disabled.’ I will never forget that particular ward round because of it.

I am now one of the first to admit that, in the weeks after I was discharged from hospital, I had what I might call a minor identity crisis. What does it mean to be ‘disabled’? What, in fact, does it even mean to be ‘able’? And how, at the age of 18, are you meant to navigate the mental and physical shift between the two? I remember breaking down and repeating over and over “I don’t know who I am anymore.”

In that period, when I was newly diagnosed, I found it really hard to find anyone who seemed to be like me. Most type 1 diabetics are diagnosed as young children, and no one else had really experienced having to change lifestyle in a highly stressful and changeable period of time. Everyone told me that things would get better, and as much as that was encouraging, I couldn’t see it at that point. I didn’t want to know. All I knew was that I didn’t want this.

I didn’t want to be ‘disabled’.

One of the things I was most nervous about was moving to university, six hours away from home, and dealing with the image of ‘university culture’ that I had fixed in my mind, of drinking, socialising and not eating with the structure that I am supposed to. I did not want to meet people and have to give them some kind of burden, of feeling like they had to look after me.

And I had, I suppose, always been seen as different at school, but that was more because I wasn’t sporty, and preferred spending an evening in the library than one in the bar. When I moved to university, I was convinced that I would be seen as different because I was disabled. I was so afraid of how I would inject in the dining hall, or how people would react if I tested my blood sugar, or if they would think I was odd for never being able to go anywhere without a whole bag of medical equipment and supplies.

I was told that university was where you discover more about yourself, make friends for life and have an opportunity to rethink how you live your adult life, to make mistakes and try new things and come out a better person for it. I was convinced that I wouldn’t have that chance. No-one wants anything to do with a ‘disabled’ person, I thought. And in Freshers’ Week, one of just two freshers on my floor, I really felt an isolation and panic set in that this was just not going to work. Now I was ‘disabled,’ I couldn’t do what I’d always wanted to do, a university degree that I loved, in an establishment that I’d worked my socks off to get into.

Or so I thought.

A year later, and I’ve just reached the end of my second term. I stayed, and I’m so glad I did. I have just represented the college at Open Days, and have taken over the executive position of Comms Officer. I’m ‘disabled’, but the only way I’ve learnt how to cope with that is by proving to everyone around me that I can be just as ‘able.’ I’ve met so many other people like me, who are proving that ability comes not from circumstance but from will.

I’ve come to see that there is no difference between disability and ability.

Of course, I need adjustments to do certain things. I need to carry medication and hypoglycaemic treatment with me at all times. It’s scary when my levels go wrong and I can feel myself drifting into the fuzziness that comes with extremely high or extremely low blood sugar. I need a fridge in my room, and a bathroom close on hand. I need time to rest, and I need more time to complete things that I might have used to been able to do much faster. But I don’t believe that it’s changed the fundamentals of who I am, or that I am able to apply my skill set to.

Does needing small adjustments define someone’s social or institutional ability or disability? I don’t think so.

We’re moving in an exciting direction, with rising awareness of invisible disabilities. It was so nice, when I went to the theatre a few months ago, to be able to ask for access to the disabled toilet and not be challenged. But we’re not there quite yet. I was experiencing quite severe hypoglycaemia on the tube in London not so long ago, and managed to make it onto the train going in the right direction (not an easy feat when everything is shaking or swimming and you can’t process information in the usual way), and safely onto a disabled seat, when I was accused of depriving an elderly gentleman of it, and promptly told that as a young and fit woman, I should get off it. I didn’t have the guts to tell him that as his tone grew in anger, his nose was blurring into his eyes and my hands could barely feel the bag I was holding.

I don’t blame him. Once upon a time I may well have even thought the same thing if I saw that situation unfold, though I doubt I would have ever said it out loud as he did. The nature of invisibility often brings to light the question: “if your disability is invisible, how am I to know if and when you need help, if and when to challenge you, and if and when you are abusing a right endowed to others?”

But maybe the question, or the emphasis should shift. In many ways, it’s not about ability or disability. It’s not about challenge or passivity. It’s about our nature. It’s right that institutions and society should be pushed towards radical inclusivity and accessibility. But that cannot survive without a shift in the social attitude too. I don’t mind if someone asks me what I’m doing, or why I do what I do, and as people in college can testify, I’ve learnt that I’ve had to put my health first. I will happily talk about my condition, but in a positive light. I am happy to explain what I need, and when I might need it. But it’s how the question is asked, and that comes from a shift in the larger social mental attitude towards disability. I wouldn’t mind so much if someone on the tube were to ask me if I was feeling OK, and whether I would be alright to move further along the carriage for the elderly gentleman, and perhaps whether I needed any assistance in doing so.

All I ask is that we shift from accusation to aid and welcome, from exclusivity and terms of derision to openness and provision.

We are all able, and should all be equal in our ability to achieve the things we want to. This comes about when not only our physical environment, but our tone, phraseology, our gestures, our welcome and our mindset shifts towards a gentler gaze on all as equal parts to a greater picture. Knowing we are loved and valued for what we can bring, and that we feel socially and physically safe is how we build an identity that is not defined by what is ripped away from us in heart-breaking diagnoses, but in the memories of joy that come when we can reshape definition from disability to ability.