GUEST BLOG: Coming to accept the term disability

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Another in our series of guest blogs written by our students to provide visibility to the broad range of disabilities and the issues that students with disabilities face.

Disability was always a distant term to me, it didn’t seem to fit into my identity despite being chronically ill. The suggestion of seeking assistance from disability services was daunting simply due to that one word, ‘disability’ because regardless of the logical knowledge that disability wasn’t merely physical but also encompassed sensory, learning and mental health issues, the stigma of the expectation of a physical, visual disability in relation to this term, this label, stopped me reaching out, despite the fact that less than 8% of disabilities require the use of physical aid.

I hadn’t ticked the box when I enrolled at the University of Ulster in 2010 to say I had a disability; I wanted to be like any other student and to leave the baggage of ill health behind me and start afresh in a new place, with new people who knew nothing about me. But this is Northern Ireland and inevitably someone will know someone and so my fresh start was quickly ended when a window swung open and my name was called out from the 3rd floor of a block of flats in halls.

It was a struggle to walk to University but my friends helped carry bags for me and sometimes I got a lift and I also had several hospital admissions. It was around this point when, despite my denials and reluctance to embrace the term, I finally admitted my ill health was preventing me from living the life I wanted to and was in effect disabling my everyday life. There was no way to escape it, I was disabled.

However, despite finally accepting the term, the label is not me, but a part of me. We need to disable the label, because an individual’s life isn’t made up of one thing. I view life as a pie chart with different segments for different parts of my identity, and while being ill and having a disability is a part of that pie chart, it is by no means all of it.

Issues faced by students and persons in general with a disability

I had to leave University of Ulster after collapsing and being rushed to Hospital for treatment of a cardiac issue. Unfortunately, due to my numerous admissions to hospital, no-one had wanted to accompany me to A+E on that occasion as apparently ‘I was always in hospital’. One lecturer even walked past me as I collapsed and asked for help; I don’t know if he genuinely was unsure of what was going on or was uncomfortable with my physical illness when he had assumed my ill health to be mental only. These issues mean simple things that other students take for granted like a planned night out can be altered quite quickly.

(1) Loss of services & lack of continuity of care

It was at this point I faced an issue some students with a disability will face; I had temporary GP registration at University and still saw my own GP at home as they had known me and my health issues from the start. Despite the linked up approach between the Health Trusts, when it was agreed I should have inpatient treatment at Antrim Hospital and I had to take medical leave from university (which meant I lost my term-time address) I was temporarily declared homeless so could no longer access the planned treatment and returned home and to the bottom of a new waiting list in another Trust area.

Being disabled and living away from home can complicate matters with the loss or stretching of resources when you are already known to specialists and is an additional stress to a student with a disability that many overlook. There is also the added expense of ill health due to needing equipment e.g. pads for a TENS machine, because while some can be available on the NHS, the wait to access them can take a long time. Many students have ended up buying their own equipment such as a wheelchair after being on a waiting list for over a year.

(2) Sympathy Fatigue

While many speak about positivity in the face of chronic illness, there is no escaping the fact that some days it just sucks. It can be fun to have someone listen and laugh along to the tale of the spasm that led to an apple accidentally flying across the room and hitting a friend. While ill health is a part of many people’s everyday life, this doesn’t mean they don’t need support or a friendly face to just listen from time to time. However, when acceptance of a person’s ill health becomes the norm for friends and family they can sometimes feel sympathy fatigue; it is not unusual, it shows the impact of disability extends beyond the person effected.

(3) The view from the chair

While I’d no problem signposting others for help, my own journey to acceptance of my illness was complicated by my difficulty resolving the idea of my mental ill health as a disability. It has since morphed into physical disabilities as well. The acceptance of a term, and the embracing of it as part of who I am in the here and now, allows me to make the best of each day and plan accordingly and I’m now more comfortable with accepting the use of physical mobility aids when I need them.

Most of the time I can manage but there have been occasions when I have been unable to get about unaided and I reluctantly agreed to use a wheelchair as a temporary measure. I found it very helpful and liberating as it is an extension of a person that gives a freedom that might otherwise be denied but people’s reactions to me were mixed.  Some act like I’m invisible or don’t know what to say or try to slink away like a cartoon villain hoping to get away from a situation that wasn’t awkward until you made it awkward. I’d prefer it if people just spoke to me as normal, my legs may be temporarily out of order, but my eyes and ears and my mind are functioning as usual.

Acceptance and Support

Acceptance of the term disability opened doors to access support from the University and has meant that since I’ve moved to Queens, despite spending much of my time in and out of hospital, I’ve actually made it to final year. Adaptation is key, and realising that a truly happy person is one who can enjoy the scenery on a detour.

Now adaptation doesn’t mean everything is perfect, I still struggle writing long essays when, due to my blood pressure, I’m stuck on my back improvising a desk with pillows for my laptop. Due to my illness I live at home and travel everyday juggling class around appointments and deadlines and it is hard, especially when I’ve to remember which medication to take at what time, and still ensure I didn’t leave my work in the printer in McClay.

However, Queens has been very supportive thus far, and having made it to third year is amazing. You might seem daunted by the idea of disability, but anyone can develop a disability, in fact, there are over 11 million people with disability in the UK, so remember, I’m just like you, except I need a bit more support, treat me and others how you would want to be treated.

Disable the Label, while it is a useful tool to access assistance and support, I’m a person not a word.

Felicity Mckee

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