Working with a disability: ‘It hurts to be unable to fulfil your own potential’

I always feared I wouldn’t be able to hold down a “normal job”. I’m not sure why it was so important to me to be “normal”; I was the kid who wore luminous leg warmers with her school uniform, who rapped on RTÉ 2, who presented school projects as theatre productions.

Yet, despite my eccentricities, having a normal job mattered.

Career, for many is a sign of independence, of which those with illness and disability are often robbed. It represents fiscal independence, a measure of success and a symbol of adulthood.

I was unable to hide my disability far beyond the first week in most jobs

So, it was a calamitous defeat, when after a number of years of grappling to hold down a “proper job” (albeit on a part-time basis) that my health finally deteriorated to the point whereby after three bed-bound months, I was forced to resign from my job last autumn. What followed was months of acute pain, isolation and, what felt like, knock after knock.

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After these months of demoralisation, a beacon of light emerged recently in the form of a scholarship opportunity in a new co-working space for creatives. The process moved quickly, and I was invited to interview. That same day I was scheduled for interview, I was called into hospital for a gruelling medical treatment.

Ill-health interrupting my career – a nauseating déjà vu.

I was kindly permitted to reschedule my interview and attended two days after I left hospital, far from recovered.

As I attempted to present to the interviewers the charismatic woman who had penned the snappy application, writer Sinéad Gleeson’s words rang in my head: “A life with pain is a distracted one, where every thought is always second to the source of where it hurts.” Disabled by intruding pain, I represented myself poorly and left deflated.

This experience compounded so much of my career previous.

When my health turned, age 15, I dropped to part-time schooling after foregoing the Junior Certificate for three months in bed. My third-level choices were limited; I required a course with low-contact hours and in close proximity to my hot water bottle and support network. The degree I chose, though not without interest and enjoyment, was far from what I would have chosen had my health granted greater choice.

My university graduation was undercut with chronic migraine. The awarded degree, typed in an unspoken language, did not reflect my experience. It represented instead subjects reluctantly studied as ill-health dictated, and results that did not reflect my academic ability but were appropriate within a context; that of high absenteeism, an inability to engage in any significant level of study and unrelenting pain throughout.

This piece of paper lacked context.

Prospective employers

When I applied for “career jobs” following university, it was this degree, these results, that sat on my CV. A doubled-sided sheet that neither reflected my ability nor my interests; my experience was invisible. I hesitated providing context to prospective employers fearing discrimination, and often found myself spieling a loose narrative in job interviews about why my area of academic study was different to my field of professional interest that was far from the full story.

I was unable to hide my disability far beyond the first week in most jobs but was extremely fortunate in encountering supportive employers who were flexible in allowing me to make my own working hours and environment. Sustaining a 20-hour week, however, required significant sacrifices. With career, came a tangential loss of my social life, and more acutely, my well-being.

Still, frustratingly many commented that I was, “living the dream” working a “mere” 20 hours a week; ignorant that this choice was not mine. Along with half-time work comes half the salary and even working 50 per cent less than others, I was left in harrowing pain, spending my evenings in a dark room bargaining with the recovery gods that I may be operational enough to shift from the pillows the following day.

With great kindness, I am often counselled to “put my health first” and that “things will work out in time”, but people with disabilities, like their able-bodied peers, have financial obligations and career ambitions. My curious brain seeks stimulation but over-stimulation so easily disrupts equilibrium. I am left with a dilemma of satisfying my mind or appeasing my health, grappling all the while to make ends meet. I am not weighed with the burden of needing to be “the very best”, but it hurts to be unable to fulfil your own potential.

Despite the upheaval and my major grief, the scholarship came my way. The interviewers did what I could not do and saw beyond the pain. I am reminded of the poet, Matthew Rice, writing about attempting to free a trapped sparrow from his kitchen:

Butting frantically against the glass -
Hope as a symbol with all hope lost.
And it was then that I thought
That losing all hope was a renewal,

With one last hope, the poet opens the study window and watches the birdy fly free. Perhaps, I too will soon take flight.

Read: When I socialise, my pain is hidden