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Chapter 5 – Fighting Spirit

By | Disability | No Comments
by Lauren Hislop 

Click a chapter link (right) to follow this story from the beginning.

'You Failed.' Those two words reverberated through my head as I made my way home. After receiving such devastating news, I went to my friend’s house and rang mum. To this day I cannot fathom how she understood me, in between my uncontrollable sobs and slurred voice, I expressed my sorrow for letting her down. She assured me I hadn’t. But I was a failure! My mind flooded with memories of mum’s devotion, supporting me in my pursuit of a social work career and in an instant it was blown. 
      My heart and soul had gone into this attempt at achieving my dreams and now all my endeavours proved to be futile; all that toil for nothing. 
      My greatest desire was to have a successful career, believing social work to be the only path towards that goal and, in that moment, I felt all my prospects of achieving employment vanish. 
      That weekend, while sipping cheap wine on my mum’s verandah with a friend, I experienced a gamut of emotionsIn between sobs, there were moments of hysterical laughter so that our cheeks almost burst. We were reminiscing all the joyous times spent together and these light-hearted moments made the weekend bearable. 

A fortnight after receiving the news, I had a meeting with my course co-ordinator and lecturer to discuss my failure. It was an unnecessary evil. I was a contestant being ejected from the Big Brother house and they were commentators discussing my eviction.   
      During the meetingI maintained composure as if seated in a classroom. My coordinator asked what happened during placement. A jug of water and glasses sat between us on the table, a distraction from the awkwardness of the moment as I explained my extreme fatigue. I sat calmly as they officially announced my failure and that I wouldn’t be able to progress to third year. 
      I nodded my head, taking a drink from the glass of water in front of me as they asked what I would do nowI smiled, announcing that I would have a break and, clearly relieved, mcoordinator told me 'that was the easiest meeting of this nature I’ve ever attended. Most students are extremely distraught.' However, mcool, calm exterior melted away on the train ride home and I felt myself begin to unravel.  
      Seeking refuge in my bedroom, I commenced howling; a monsoon of tears fell down my face. Weeping into my pillow became a daily ritual. I felt as though my world was ending and melancholy took hold.  
      Growing up, there were peers and teachers who believed my aspirations to be too high. I was resolved to prove them wrong - people with disability could succeed in the career of their choice and yet I had confirmed all my critics’ beliefs; surely my failure would be attributed to my disability. 
      My soul was crushed beyond redemptionSelf-loathing and reprimand captured my thoughts as I was consumed with guiltsurrounded by a murky nothingness. I experienced immense emotional anguish, finding reprieve only when asleep. 

An unsteady gait had resulted in many falls during my life yet, this was the hardest fall of all. was descending into a pit of despair, rapidly surrounded by opaque fog and unable to view the world clearly. I felt my life was over.  
      My mental health had remained relatively intact up until nowHowever, depression ensnared me like a tsunami. I began to behave in extremely irrational waysalienating myself from friends and, as result, I spiralled deeper into despondency. 
      My family, whilst supportive couldn’t understand my state. I had always been positive, and now my nature was one of utter despair. 
      Sitting on my bed staring out my window, I could see time progressing as my world stood still. Photos on the wall of me, blissfully carefree with a crocked smile amongst my friends, were in dire contrast to the bleak and hopeless future I faced now.  
      But my fighting spirit hovered in the background and I slowly became determined to return to the degree, to give work placement another try. 

Isecond semester, I commenced a new placement at Gosford Centrelink, five minutes from my mother’s house. I finally felt the stars re-aligning when I instantly warmed to my supervisor. Nadine had chestnut hair and emerald green eyes; she also went to the same high school a couple of years ahead of me. With achievable tasks and a nurturing environmentsuccess appeared to be on the horizon. 
      After a week or two I was asked to give a talk about disability in the workplace, to professionals currently supervising a social work student. I was thrilled to be involved, believing my previous work placement experience has resulted in the social work department wanting to make work placements more accessible. 
      I arrived with my friend Shirley, a disability advocate who was one of the presentersWe were to meet my friend Justin, who was presenting as a third year social work student. However, we were ushered into a private room and I felt déjà vu, thinking it had to be about my performance in the current placement. What they conveyed to me was horrific - Justin had suicided and to this day I can’t recall what words we uttered. Justin was in my close group of friends, his death tore the group apart. 

The loss of Justin pushed me over the edge, I abandoned the degree and spent hours in my room sobbing uncontrollably.       
      I went to a couple of recommended counsellors which didn’t work for me. Seeing in the New Year I was near breaking point, in sheer desperation pulled a number for a psychiatrist from the phone book and asked my mother to call his office. 
      Meeting this psychiatrist helped lift the veil of darkness impeding my outlook and the introduction of cognitive behavioural therapy allowed me to accept I had an illness. If I wanted to get better I had to become an active participant in my recovery so, during the year I caught up with old friends, travelling independently to Tasmania for the first time and my experiences there will always be cherished. 
      The dark abyss was fading, light had started to seep through the curtains. I learned to live again and realised my entire worth wasn’t dictated by achievements; my character began to re-emerge 
      I learnt that relinquished goals could be replacewith new ones. I arrived at the conclusion that social work was neither the course for me nor the only path towards a meaningful vocation. I enrolled in Social Science majoring in Community Welfare, this degree offered opportunities for me to foster my interest in policy development. 
      After taking a detour, I was finally back on coursereawakened with optimism for my future. I knew that if I was to fall again, I would rise from the ashes.  
      I was ready for my second act.

 

Chapter 7 – The Job Hunt

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by Lauren Hislop 

Click a chapter link (right) to follow this story from the beginning.
As the afterglow of graduation receded, I enthusiastically leapt into job searching mode and, being a novice, I sought the support of the career advisor at uni. I instantly bonded with Sally - her warm disposition, skillset and enthusiasm for my prospects injected hope into my veins. She assisted with my résumé development and drafting job applications, I saw her as my work-seeking oracle.
      Sally was too good at her job and that meant less and less access to her over time so, I decided to register with a disability employment agency and met Wendy, my assigned specialist. At our initial meeting, I was assured that I was an excellent candidate and that their service was well placed to help me secure employment. Subsequent visits began to curtail my faith in Wendy’s abilities: discussions seemed limited to small talk about the weather “it’s a warm day today”, health “how are you?” and praising me for sending out résumés and cover letters. I was expecting her to market me to employers and initially call them on my behalf. I believed she would actually assist me in preparing job applications. She offered me no support at all.
      When we first met she claimed that she had contacts at Newcastle uni and that she would market me to these contacts. On subsequent visits when I asked her about these contacts she just shrugged it off. This contradicted their website as the organisation claimed that they help people with disabilities find work. I was very disillusioned that she didn’t offer the support I desperately  needed.
      During the process of applying for an internship at the Social Policy Research Centre (SPRC) at the University on NSW (UNSW), I sought Wendy’s advice and after providing her with all the information, she just glanced at me with a vacant stare, claiming “you are so good to apply.” Her condescending attitude infuriated me and smacked of paternalistic intent. I asked her if she could look over my applications and received no constructive feedback on any of them. Fortunately, I had my career advisor Sally to help me.
      Sally was still in high demand, my access to her was limited and realising the fallibilities of my disability employment service confirmed my fear that finding a job rested squarely on my shoulders. I had no idea what I was doing, I was literally ‘winging it’!

I wasn’t prepared for the solitude of job seeking, spending hours in front of my computer screen, perusing university websites to view examples of cover letters I could draw from as templates. I applied for advertised positions and I emailed organisations informing them that I was interested in work - voluntary or unpaid work experience.
      My first job application was for a disability advocate position. This would be my dream role and apart from my tertiary qualifications. I had firsthand experience. Unfortunately, my application was unsuccessful. I knew I lacked experience and had hoped I could match that with my passion. I wasn’t devastated, graduates were rarely hired at their first attempts for work, yet I had no idea how long it would actually take to secure a position.
      Each morning after farewelling mum off to work, I sat at my PC typing 'To Whom It May Concern' letters. Gradually, I began to resent this faceless person who failed to understand the courtesy of a reply, as multiple email applications and EOIs flew into cyberspace, never to be heard of again.

By mid-November my patience began to wane. I had graduated in June so, surely by now, I should have secured at the very least unpaid work experience. Wanting to pursue a career in disability research, I decided to ring the Special Education and Disability Studies Centre at Newcastle University and ask for the name of the director. What a mistake! The secretary stated she was unable to understand me and when I tried to repeat myself she interrupted, asking in an extremely condescending tone whether there was someone with me she could talk to. I was insulted and incensed; how dare she talk to me as I’m though I am a child! Slamming the phone handset hard into its cradle, I was surprised it was still functional.
      My slurred speech was a hindrance and a barrier to finding work because I knew that people found it difficult to understand me. However, I felt I had no choice other than to call because emailing clearly wasn’t working.
      Through tears of rage I glanced at my degrees on the wall - Mum had lovingly put them in gold rimmed frames - and I was thinking they were all for nothing. How could she be so proud when no one wanted to hire me?
      Over the next few years I applied for in excess of one hundred jobs with no success. I felt wretched and hope began to fade, leaving in its place a strong conviction that a two-tiered system was at play: one for able bodied job seekers and the lower one for people with disabilities.
      A horrific thought, worse than anything I could have imagined, lurked in my conscious mind: "was I destined to watch daytime TV all my life?” I could not think of anything worse.
      Despite my feelings, I continued with my relentless emails to places I had interest in working for. One day I received a positive response from an academic at SPRC - she urged me to apply for an internship with them.
      This was a golden opportunity, one which could open doors for me and after several rewrites of my application and with crossed fingers and toes, I pressed send on my PC. Soon after, I received an email requesting my attendance at an interview. I was ecstatic, at last I may have found my break!

Mum and I travelled by train to Randwick and took a taxi to the University of NSW campus. Waiting to be called in for interview, I was extremely nervous and tried to replay all the advice Sally had given me. When they called my name, I walked unsteadily into the room, desperately attempting to maintain bravado and was introduced to the interview panel consisting of three people. Although I made every attempt to speak in a clear voice, they asked me to repeat myself multiple times and one panel member maintained a bored expression throughout the entire interview. I was convinced I hadn’t nailed it.
      On the train ride home I told Mum, “I really don’t think I got it. One of the interviewers looked like she’d rather watch paint dry!” We both laughed and thought it had been a good experience for me to have reached interview stage.
      Once home, I was extremely surprised when I received an email offering me the internship. I was elated, responding right away YES! My happiness lasted a few days until I wondered how on earth this going to work was. I live on the Central Coast and the internship was in Randwick. I would have to stay there and arrange for personal care.  I was suddenly overwhelmed. I turned to mum, “It looks too hard, I can’t do it’
      She smiled, "Yes, you can. We’ll figure it out."’
      Mum was right. We did figure it out.

Chapter 9 – Income for Independence

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by Lauren Hislop 

Click a chapter link (right) to follow this story from the beginning.


Whilst I enjoyed my internship, I was relived it was over, as now Dudley and I would start our life together, under the same roof.
            We had been dating for several months before Dudley suggested we live together. Initially in our romance, I travelled from the Central Coast to Newcastle each weekend by train—so besotted it was not a chore. Although I was doing my best to ‘play it cool’, the man captured my heart from the start. One Friday night, within a fortnight of starting my internship, we were on his couch watching a wildlife show and, in our best David Attenborough voices, we were commentating. I was in hysterics, then, suddenly, during a commercial break, Dudley asked me to move in with him. I spat my tea back though my straw. I was stunned!
            ‘Are you serious?’ I asked.
            ‘Yeah, you don’t have to,’ he added. I guess he picked up on my hesitancy and I replied that I had not said ‘no’. I agreed to move in with him on one condition: that I would contribute to rent and bills and, looking into his penetrating blue eyes, I said ‘yes.’ This proved to be one of the best decisions in my life.
             I chose to move in with Dudley after my Sydney internship ended and we found a federation house, abundant with character, close to shops and cafes in Newcastle. My community worker from the Cerebral Palsy Alliance (CPA) assisted me in organising carers for morning personal care. I would have to pay for this but it was doable with my current income support.
             Moving in with Dudley provided me a sense of emancipation and independence and as much as I was driven to gain employment, I planned to first settle into my new home. Unfortunately, I didn’t have the luxury of time. After a few days, I notified Centrelink of my altered living arrangements and received new paperwork to complete. The questions on the forms were invasive and my relationship with Dudley was quite new, so exchanging financial details was extremely confronting.
             Two weeks later, I returned to Centrelink with my support worker Claire and the forms were perused by a middle-aged woman with blonde hair and the empathy of a storm trooper. She firmly announced that, due to Dudley’s income, my entire disability support pension would be removed along with my concession card. I was devastated, walking outside in silence with Claire before releasing an almighty howl. Tears blurred my vision as this moment took its rightful place as one of the most disempowering points of my life.
             Millions of thoughts raced through my head and anger pulsated through every cell of my body. How could I possibly afford to live with Dudley? Why remove my income support?
             I had expected my income support might decrease because of Dudley’s wage. I was not prepared to be completely cut off. Claire offered me a cup of tea and solace but I declined. I just had to figure this out. This was not the 1950s. I loved Dudley and the notion of being financially dependent upon him as my partner felt archaic. I had always been a fiercely independent woman and now that identity was slipping.
             When Dudley arrived home from work and I told him what happened, he said he wasn’t surprised. Although he was happy to support me, I placed too much value on my autonomy, finding the thought of being reliant on my partner degrading. After some discussion, we agreed he would pay for my rent and food, but I wanted to pay for all my other expenses. The question was how? I wanted to live with Dudley and wondered how I would manage to be financially independent.
             Firmly believing a gross injustice had taken place, I challenged Centrelink’s decision. Dudley and I did not share finances nor did I have a desire to do so. I wrote to members of parliament regarding my plight and their responses stated that it was out of their hands—it was legislation. I also sought the assistance of a disability advocate, then abandoning this avenue with the realisation of the time and challenges involved. I decided to devote all my energy into finding work.
             Securing employment remained elusive even after 18 months from graduation; my prospects looked grim and I needed money fast! My motivation to secure work suddenly changed from a desire to be productive, utilising my skills and passion to a sheer desperation for any paid work. I began to question whether I wanted to live with Dudley. Accepting that I did, I decided to find any means of income but as time progressed, I started to become housebound as I had limited funds.
             Seeking the assistance of a local disability employment agency, I was supported by consultant Dianne, who was lovely and extremely knowledgeable. She suggested I apply for mobility allowance whilst I was looking for work and this became a huge help, as I could only use taxis to travel around town. My unsteady gait meant riding buses was out of the question. While the mobility allowance helped a bit, I was travelling by train each fortnight to visit mum and without a concession card, I was paying full fare with money I didn’t have. I doubted I could pay with monopoly money. I felt extremely humiliated, relying on Dudley’s income rendered me dependent and I felt stripped of my dignity.
             My desperation to generate income became extreme, I was willing to do almost anything, including life modelling. There were limitations even upon the ‘just for money’ jobs that I could do, my disability meant that jobs such as delivering pamphlets, stacking or waiting tables were out of the question.
             As I was churning out job applications and as the year was ending, I came across a position that I desperately wanted: a research position at Newcastle University. My employment advisor encouraged me to apply, convinced that my prospects were good and that I had a well-matched skill set. I hit a new low when I was unsuccessful. I felt that I was applying for countless positions to no avail.
             Through the CPA, I connected with Sue Werner an employment consultant; and Sue Brown, the regional manager. Claire, my community worker, emailed both women outlining my financial plight and attaching my resume. Shortly afterwards, Sue Brown suggested that she circulate my resume through her contacts. I was thrilled and began to receive notifications for a range of positions.
             In the New Year, Sue Werner told me of a possibility to have a research contract with CPA. The job was for 12 hours each week and half my time would be in the office, allowing me to work from home for the remaining hours. Finally, I would have financial independence and be able to contribute to the rent and expenses. Was this a dream or were the stars finally aligning? I took a deep breath and accepted the truth. I could hardly wait to start!