My relationship with disability is complicated. Type one diabetes is an invisible illness, but most days, I don’t consider myself to be “ill.” I’m incredibly privileged in that the NHS allows me free access to insulin, the Omnipod Dash insulin pump and the Freestyle Libre flash glucose monitoring system. I live a relatively “normal” life, and as a result, I haven’t always felt comfortable using the label “disabled”: but was this the product of societal perceptions of disability?
I was diagnosed with type one diabetes in August 2015, at the age of seventeen. For almost six months, I’d been suffering from excessive thirst, aches and pains, and tiredness, and I’d lost about two stone in a month. I’ve firmly rested at a size fourteen for years, so this dramatic weight loss spurred unknowing family and friends to compliment me on how “amazing” I looked.
Little did I know, I was months off a diagnosis of a long-term health condition that would leave me injecting insulin for the rest of my life.
When my mum and I arrived home after three days in the hospital, a relatively short period for a newly diagnosed type one (my blood sugars were so high that I was lucky that I wasn’t comatose), we both sobbed as we attempted to navigate the vast amounts of information we’d been given. I cried as I got mixed up between my insulin pens, proclaiming that I “couldn’t do this.” Six years on, I still feel that way sometimes.
The Equality Act of 2010 labels my type one diabetes as a disability. I quickly learnt that hidden disabilities are wildly discriminated against, as bars and pubs alike have often tried to impede me from entering with my sugary snacks in case of hypo.
I’ve been asked for “proof” that I’m diabetic; I’ve been told that I don’t “look” diabetic; I’ve had my insulin pump mistaken for a phone during school exams, and I’ve had glaring looks for injecting insulin.
My biggest confrontation with out-right discrimination took place at a concert in 2018 at Manchester Arena, as I was told that I couldn’t take my (small) bag in with me. Sat in the heights of the arena, I spent much of the evening paranoid that I’d need access to sugar and wouldn’t be able to make it down the miles of steps in time.
Type one diabetes is vastly misunderstood by society. JDRF reports that around 400,000 people are currently living with type one in the UK, accounting for a mere 8% of cases of diabetes. It’s no wonder that I’ve been subjected to so many odd glances.
As a child, I thought that being “disabled” equated to being in a wheelchair, and who can blame my seven-year-old self for my confusion?
WHO cites that one billion people worldwide live with a form of disability, and in the US, 74% of those with disabilities do not use a wheelchair or anything else physical that might indicate disability. This leaves a huge percentage of the worldwide disabled population with hidden disabilities, and I form part of that statistic.
For a long time, I felt that other people had it “worse” than I did, so I hesitated to label myself as disabled. I was taught by society that disability had to have a larger impact on my life than I felt my diabetes did: if I wasn’t constantly bed ridden or in hospital, I felt that my plight wasn’t worthy of a label.
I felt that I wasn’t “disabled enough.”
I’ve always been stubborn in my belief that type one doesn’t impede my ability to do anything: I sat my A-Levels, started university, moved abroad, and took up running with diabetes by my side, and it’s had its difficult moments, but it’s never stopped me doing anything.
I’m not alone in my complicated relationship with my disability. Stella remarks: “I did consider myself disabled after my diagnosis, but I would not consider myself disabled anymore. My insulin pump and my Freestyle Libre help me a lot to keep my blood sugar levels under control.”
Andy states: “I am a year into type one, and I don’t consider myself disabled”, and these sentiments are shared by Judy: “I don’t look at myself as being disabled. I have many things besides type one, but I don’t like that label because I am able to do many things.”
This said: is owning disability about accepting that it doesn’t need to be physically impairing for it to count? Does this stance negate the status of those who are physically impaired?
Other type ones interpret disability differently. Marian highlights: “Living with an invisible illness, labels can sometimes feel validating.” Kristen’s journey is very much like mine: “I’ve moved from very much playing it down and thinking of it more as a ‘condition’ to fully embracing that it is a disability.”
After living with type one for six years, I now understand the nuances of disability. Who am I to gate-keep my own illness?
Accepting and owning my disabled status has enabled me to connect with others with invisible illnesses, type ones and non-type ones alike, as well as advocate for the rights of those who live with invisible illness.
I’ve learnt that disability isn’t always debilitating: it can be empowering.
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