by Lauren Hislop Click a link (right) to follow this story from the beginning. Still wearing my pyjamas, I stared out of the window, anxiously awaiting the postman. This particular morning, I expected a letter to determine my fate: to be accepted into university or not to be. The postman pulled up in front of my house. I walked as fast as my crooked legs could carry me and grabbed the letter from his hand. I opened the envelop in the kitchen with my mum standing anxiously behind me. I was offered a position in the Bachelor of Arts degree! Exhilaration flooded over me. I was to study at University of Newcastle, Ourimbah campus, only 10 minutes from our house. Firmly believing that a university degree provided assurance of employment, I eagerly waited for my studies to commence. When I met Ruth, the university disability officer, I was so impressed that she was in a wheelchair and we shared an instant bond. Ruth offered a certain empathy beyond what an able-bodied officer might possess. Her presence had a profound influence on my life. Ruth’s competency in her role affirmed my conviction that I would be gainfully employed and prosper myself, regardless of disability. Ruth offered me an array of support including note takers during lectures. Note Takers? I was mystified. During senior high school, due to my slow typing, I would photocopy notes from willing peers. Providing me with note takers was invaluable. The world of university was infused with vibrant colours. Studying subjects such as Sociology, Anthropology and Philosophy were catalysts for a paradigm shift. My subject choices also ensured that if I wanted to transfer into Social Work in the future, I would gain credits. The campus was surrounded by lush trees, rendering it an ideal setting conducive to lofty ideals. Utilising an electric wheelchair, I sped through the campus, parking it outside the lecture theatres. Sitting in my first Anthropology lecture was transformative - the opportunity to respectfully immerse myself in other cultures. As someone who has regularly been constructed as an ‘other’, seeking a career that could alter people’s perception of cultural ‘other’, appealed. I also loved the notion of residing in a wooden hut in New Guinea, writing my observations as dusk fell. Romanticism surrounded my idea of traipsing through the jungles with the locals. Reminiscing my passion for pursuing anthropology, I now realise the absurdity of this dream. I had an incredibly unsteady gait so walking in an isolated jungle probably wasn’t the wisest idea! Apart from my impractical aspiration to be an anthropologist, I gave little thought to life after graduation. I yearned for employment but my immediate focus was on completing assessments and passing exams. I achieved good marks during my degree, however, my typing prowess ensured writing essays were an arduous task. Not to be dissuaded, I was fuelled with the spirit of tenacity. During my philosophy lectures I was constantly inspired. One of my lecturers even revealed to me that an academic in his department had cerebral palsy! I was ecstatic, affirmed in my knowledge that my disability would never be a hindrance to success. I also devoted energy towards my social life. I was invited to parties and although I never participated in mind altering substances, I enjoyed observing the hedonistic behaviour of my peers. Laughing, conversations and red wine are distinctly associated with my early uni days, as well as lasting friendship. I met one of my best friends, Jo, during this time and she has left an imprint on my soul. We remain friends. In second year, I had my first taste of advocacy. Ruth had left her role, replaced by a young woman with little spark in her eyes. Shortly after entering the role, she removed note takers as support for students with disability. I was incensed. Inspired by mum’s strong advocacy in my past, I unleashed my own ability to do the same! Instinctively, I knew that advocating would benefit more than me. I produced articulate letters, stating the facts in a calm and rational manner. I adhered to the complaint process and went through the proper channels. When I alerted the student union, they took action. This resulted in the reinstatement of note takers. I felt as though I was a catalyst for change. My pursuit for social justice was firmly set in motion. After I graduated, I departed from the safe haven of uni, to the realities of the workforce. As a fresh-faced graduate, I could never have anticipated the difficulties I was yet to encounter. I was filled with excitement, having a deep conviction that I would soon be employed. My mum asked an old family friend, Chris, to help me source employment. He was the manager of a Disability Employment Service and happy to oblige. He arranged for another senior staff member named Kath to assist me. Whilst extremely kind, Kath was perplexed how to help me and looked at me with a vacant stare. I expected her to utter the words ‘we don’t know how to help you’. After she suggested I apply for secretarial work, my indignation grew. ‘I studied a university degree only to qualify for a secretarial position?’ However, on reflection, my Bachelor of Arts didn’t really qualify me for many roles. I was offered work experience at their employment service. I found it an interesting environment but was curious that, as an identified disability agency, no-one with a disability was employed there! I did appreciate the experience of working in an office and was given the opportunity to complete a research project. The details are hazy in memory but I remember the sense of satisfaction I felt completing it. I enjoyed exchanging anecdotes with staff in the lunchroom, whilst eating peanut butter sandwiches under bad florescent lighting. Finding out that many of the employees had no tertiary qualifications, induced a small pang of resentment. I thought, ‘Why are they employed and yet the service can’t find me a position?’ At the time, I didn’t acknowledge that my difficulties finding work may be caused by discriminatory attitudes. I believed it was because my Bachelor of Arts degree wasn’t ‘career-focused’. This prompted me to apply for a second degree in Social Work. I believed a Social Work degree would automatically lead to employment and enable me to pursue my dream of becoming a disability advocate. I was convinced that I was on the path to success, and if my Arts degree was a detour, it was one of the most enjoyable detours I have ever experienced!
by Lauren Hislop Click a chapter link (right) to follow this story from the beginning. Accepting the 30 day internship at the Social Policy Research Centre (SPRC) was easy, I was infused with excitement because of the many opportunities it offered. Supervision would be provided by Prof Karen Fisher and Dr Christina Purcell, both predominantly researching issues pertaining to disability, matching my interest! To ensure fatigue would be minimised, I requested to work two days a week and my supervisors agreed, their flexibility put me at ease. But I was daunted by other aspects of this new adventure. Firstly, it was in Sydney and would be an 8 hour day so, commuting back and forth from the Central Coast would be exhausting. I would need to spend two nights each week in Sydney. So, I stayed at The Centre in Randwick - a bed and breakfast run by nuns which my Catholic mother was happy to learn! My accommodation, with bleached white walls, was immaculately clean and simple, complete with a single bed and a small bathroom. In order for me to stay in Sydney I had to arrange personal care - no mean feat in the days before the National Disability Insurance Scheme (NDIS). I was fortunate to have the guidance of Claire, a fantastic community worker who found appropriate supports for morning personal care, driving to and from work, meal preparation and shopping. I shared a ride with a friend on Sunday nights to start work on Monday morning and would return home by train in the late afternoon of Tuesday. My mobility at the time allowed me to do this and once again much of the organising was undertaken by my mum. Her role has always been instrumental. It was time to start my internship and on a crisp May morning, as I stumbled across the campus with the loud sounds of planes flying overhead, I thought “we’re not in Kansas now, Toto.” I was warmly greeted by Dr Purcell, who ushered me into a room to discuss my first task: a literature review about individualised funding for disability care, where allocated funding provides people choice in the selection of their supports. I found this a revolutionary concept, having not had the opportunity to select my own carers and feeling at the mercy of agencies when workers were either patronising or had just not shown up! This really was the first rumblings of the NDIS and it felt like a utopian dream. During my first day I patiently waited for IT to log me into my account. I had choice over the timing of my lunch and decided to take my break at 1pm, walking a small hike to the uni café to purchase banana bread and tea. Not the healthiest of lunches but one which involved no packaging to open. Fortunately, the café staff graciously carried my tea to the table after a couple of spills by me, the stains of which I failed to hide from my colleagues. Whilst I attended meetings and had weekly sessions with my supervisor, the majority of my work was solitary, spending hours on a PC, scouring journal articles for my literature review. Dr Purcell’s guidance was invaluable, she would often question me regarding my perspective as a person with a disability. This instilled in me a sense of worth and validation. Government agencies would request the SPRC to conduct stakeholder meetings and Prof. Fisher would request I attend with her. On one occasion, we met with the Manager for Community Living and Emergency Response for the Department of Human Services, who asked Karen to conduct an evaluation of individual service packages for people with disabilities. We were ushered into a plush tall building with security like Fort Knox and it was during this meeting that I directly saw how research could greatly impact people’s lives. My conviction was bolstered. I could improve the living conditions for people with disability through my passion for research. Both my supervisors invited me to meetings with fellow researchers at SPRC and I found this extremely stimulating, especially as I was actively encouraged to speak up and was engaged in the discussions. I felt valued as a team member. During my internship, I was asked by a friend training workers in a Diploma of Disability whether I would present a talk about the research I had participated in at SPRC. Chris was specifically interested in the provision of individual packages for people living with disabilities and offered me renumeration for the presentation. I was blown away! I was granted permission by my supervisors to put together a presentation as long as SPRC was acknowledged and I was ecstatic, this was my golden opportunity. Arriving at the presentation, I was confronted with 10-15 students peering at me and I studied their expressions intently as Chris read out my paper. I found the students' reactions priceless and afterwards I was praised and some seemed in genuine awe, which inflated my ego to the size of a hot air balloon. Returning home, I quickly came back down to earth. My internship was coming to an end. I have blurred memories of this time in my life, working two days a week and commuting back and forth from Sydney was tiring and on top of this I had additional commitments. Prior to my internship, I had agreed to participate in a program run by the Cerebral Palsy Alliance (CPA), assisting young adults with cerebral palsy engage with study and/or work. I was paired with a mentor and had fortnightly group sessions in Newcastle. Luckily, I was able to travel by car with another Central Coast participant. On top of my internship and CPA commitments, my partner and I were searching for rental properties in Newcastle. I would travel to his place on Thursday nights and leave Saturday afternoon. I remember arriving at my accommodation in Sydney each Sunday night and taking refuge in the solitude, a welcome respite from the busyness that was my life. Amidst all this chaos, I thrived in my work environment. In the last few weeks, Christina mentioned I should have lunch with the other staff members, in the staff room. I had been eating at the café for pragmatic not antisocial reasons: I couldn’t carry my cup of tea back to the staff room. I hadn’t mentioned this to Christina, I did not want assistance and yet, on reflection, I believe she would have wanted me to have told her. Christina had always been extremely accommodating. So, I ended up having water instead of tea, engaging in conversations with my colleagues, vivacious without caffeine! On my last day I shared a tea with Karen and Christina, sharing laughter and idle chitchat. I produced my literature review which was well received. My internship was a success! I thoroughly enjoyed my internship and was now eager to start my new life with my partner, Dudley.
by Lauren Hislop Click a chapter link (right) to follow this story from the beginning. Greeting the New Year, my soul soared. My second year of social work was going to lead to placement and under the supervision of a qualified social worker, my degree would finally come alive. My dreams of being in a workplace would transform into reality. When I moved to Newcastle, I boarded with a family and living away from home, gave me newfound independence. In the first semester, we had to complete a subject enabling us to proceed to placement. There was also an assessment requiring us to counsel a ‘client’ actor for five minutes. We had to be a ‘social worker’ using reflective listening skills, whilst being observed by three examiners. When our lecturers described this assessment to us, they ended by saying that a few people fail the assessment each year! Due to my speech impediment, I was filled with dread. My potential for stuffing this up felt colossal. One of my friends suggested practicing and was happy to act as a client. It was his idea that during my introduction to the ‘client’, I inform him/her that I have cerebral palsy, causing my speech to slur. He said I should encourage the ‘client’ to request me to repeat myself if required. I believed this to be sound advice and absolutely decided to use it. Assessment day came and my nerves were through the roof. I have struggled to make myself understood all my life and now I would be tested on it! My name was called and as I walked into the exam room, my lecturer turned to me, snootily exclaiming, ‘we don’t know how you’ll go, but we’ll give you a try.’ I was ushered into that room so rapidly, I didn’t have time to be mortified. I conducted my interview, using my friend’s advice. Afterwards the ‘client’ wished me good luck and I believed him to be sincere. I left the room, fleeing to the Ladies. I cried in a cubicle. Unfortunately, my howls reverberated throughout the building. Ros, one of the lecturers I respected, tapped on the toilet door. I sheepishly opened it. ‘You passed!’ she exclaimed with a smile. The relief I felt was indescribable. In second semester, attendance at uni would be 3 days a week and then 2 days of practicum. Worried about balancing these commitments with study, I was permitted to delay my placement until the summer break. I would work for 10 weeks full time. As eager as I was to start work placement, my living situation in Newcastle was unstable. Nearing the end of semester, I had to leave where I had been staying. My friend temporarily offered me one of her children’s rooms, not an ideal way to commence prac. I didn’t let it deter me. I was placed in a hospital with a supervisor working in child protection. Her clients were mothers of newborns, at risk of harming their child. As I walked into the hospital grounds on my first day, I was beaming with pride. Wearing professional attire, I shuffled my way to the front desk and was greeted by Alice*, my supervisor. She was my age and appeared nice but I did not warm to Alice. She showed me around some of the extensive grounds of the hospital, rendering me puffed. I delved enthusiastically into the fast paced and stimulating work environment. From my office, one could hear the clicking sound of heels in rapid succession down the corridor. Sitting in on multi-disciplinary team meetings was invigorating as I observed the interactions amongst professionals. I also observed patient interviews conducted by my supervisor. The patients seemed undaunted by my presence and on occasion, I found them to be more accepting of me than staff. During lunch, I thoroughly enjoyed my exchanges with some of the social workers. I felt included and valued as a member of their team. I felt optimistic and appreciative for the learning experience. However, a few weeks in and optimism faded to extreme fatigue. Working full time during the week and travelling to and from my mum’s place on the central coast every weekend was placing a strain on my body. I had to write a literature review, undertaken in an isolated computer room. It didn’t bother me, I deeply appreciated being there. However, the slow pace of my writing hindered the completion of my literature review. I compensated by completing extra work at home; weekends and nights spent on both the review and daily journal entries. My only respite was mealtimes and sleep. My body was working at maximum capacity and was depleted. However, I chose to ignore the signs, ruthlessly determined to make it to the finishing line. The adage ‘my soul is willing, yet my body is weak’ dominated my thoughts. My mind was constantly reprimanding my body for its betrayal! Writing case notes was a challenging task. My peers wrote directly into the files. I had to access a computer, type and print them, then ask for them to be attached to the case notes. My supervisor suggested I needed to find ways to address this, without providing alternatives. I wasn’t able to carry a laptop and didn’t own an iPad, what else could I do? I was not in a nurturing environment at placement, regularly the recipient of subversive messages from my supervisor, that not sustaining the pace of my able-bodied colleagues was proof of unsuitability. I was navigating a ship in stormy waters without a life jacket. I had to succeed and so resolved to endure this drudgery. Allegedly we could contact a lecturer at the unit if we had any difficulties. However, this lecturer had previously expressed to me concerns about my ability to succeed in the course. I was not going to provide an opportunity to confirm her beliefs! I had my mid-placement review on the 20th December. I was given a glowing report and my supervisor praised my abilities. It was agreed that I was to begin independent casework. I left the meeting relieved and went home for a few days over Christmas. Upon return, my supervisor told me I was likely to fail the placement, due to not completing the literature review. I was aghast! I had not been given any indication that I would fail. I hurriedly wrote and submitted the outstanding paper. However, when my supervisor called me into her office, my heart skipped a beat. She announced I had failed and would not be proceeding to third year! “YOU FAILED”. Those words emerging from her porcelain mouth, shattering my dreams for the future in a single moment. After she left the room, I was inconsolable. I was a soldier wounded and removed from battle. The white flag rose, I surrendered. And just like that, with a tear stained face, I left the hospital and made my way home. *the name of the supervisor has been changed
I’m Lauren. I’m a writer, desiring to open minds, broaden perspectives and challenge status quo. I am a ‘crazy socialist’, with three university degrees and a fiercely honed sense of independence. I also have cerebral palsy, which affects every muscle in my body, including my speech. I require subtitles to decipher my spoken word! I am extremely passionate about writing. Writing is a medium to express myself articulately and creatively! It causes my heart to soar.
My body isn’t a temple, it’s more an outhouse! My mobility and fine motor control is extremely limited and likely to degenerate as I become older. I require support workers to assist me with some daily tasks. This year, I was privileged to be asked to write a series of blogs about my experiences seeking and securing employment as a person living with a disability. In my situation, the pathway toward employment has not been straight forward. I have experienced life events which have sometimes prevented me from working for periods of time. My tales over this series of blogs will reveal the challenges and successes of my career aspirations.
Chapter 1 The optimism of youth rested upon my shoulders as a gentle mist when I was young. As a 5 year old, I could see no difference between myself and any other child. I had a purity of spirit, untouched by the harsh realities of the world. I could hardly walk and yet dreamt of being a ballet dancer. One may say, my grasp of reality was extremely loose. I had the desire to sing and dance. Music was an integral part of my life. I watched Shirley temple re-runs on Sunday and danced in our living room, my mind imagining grace and dexterity as my feet and body made gravity defying twists and turns. At 6 years of age, my school physio encouraged my mum to enrol me in ballet lessons. With trepidation she did so, with ballet shoes in one hand and a helmet in her other! The helmet was to protect me from the frequent falls I had while walking. Mum strongly believed my head to be a ‘precious commodity’. I thought the helmet was downright embarrassing! Sadly, my ballet career came to a grinding halt when I was 7 or 8. I realised they were never going to let me graduate to the higher classes and that I would be forever confined with six year olds. I maintained my passion for dancing and singing, blissfully unaware of any lack of ability. My speech was unintelligible and my body didn’t operate as I anticipated. However, my heart was on the stage. I joined children’s theatre for a couple years, I even managed to score a spoken part! The line was ‘no’ and to this day I have remembered it, repeating it often with clarity. My partner can verify this! My performing aspirations ended when I fell on stage. My body was battered and bruised but for me the worst wound of all, my pride was bruised.. At 11 I began to develop more realistic expectations. I was fully integrated and had no cognitive limitations. I thrived on writing, using a typewriter. I often had difficulty speaking, though my head was teeming with words. My mother was my favourite story teller. She has a magical ability to weave stories and I was infected by an insatiable desire to do the same. When I went to high school, future employment became more prominent in my mind. I sat with my laptop, in my plaid skirt and worked diligently, undaunted by my peers. I was intelligent and received decent marks. During this time, I visited the Cerebral Palsy Alliance one day each year. I had a friend there, Lyn, and her symptoms were far more severe than mine but her mind was sharp as a tack. The problem was, she did not have the same opportunities as me and was working in a sheltered workshop! Lyn wasn’t able to attend a mainstream school or university. I realised right there and then, in that old decrepit building with Lyn by my side, how privileged I was. If I was born a few years earlier, perhaps I wouldn’t have had these opportunities either. I knew at that moment, I wanted to become an advocate for people living with disability. My desire was to work in the field of social work or social welfare. I believed wholeheartedly I was going to make the world a better place for people with disability. In Year 10, I had the opportunity to experience work experience for a week. We were given preferences and I chose social welfare work. I chatted to my career advisor, a vibrant woman with long jet black hair. She believed I had endless opportunities and I was infused with her optimism. I asked if I could go to the Cerebral Palsy Alliance and she arranged it. Mum helped me secure accommodation in Sydney and to procure support workers to assist with personal care. When mum took me to Supre to purchase ‘work clothes’, I felt as though I was in a boutique, taking a step towards entering the adult world. My work experience supervisor was brilliant; I had my own desk and I conversed with colleagues. I immersed myself into the environment. Although the office was painted a dismal grey, the vibrancy I felt, due to the people, was palpable. I had my first taste of independence and I yearned for more. After returning home, I received a glowing report from my supervisor. She praised me for my competency and professionalism in the workplace. This fuelled my desire to become a productive member in society. I was determined to become an advocate for people living with disability by pursuing a degree in Social Work. In senior school, I aimed for the ‘back door’ entry to a Social Work Degree, applying for the lower TER (Tertiary Entrance Rank) option of a Bachelor of Arts. Whilst I was in all mainstream classes within the top 20% of my year, I was physically slower than my peers. I found typing laborious and due to physical restraints, my speed was exceptionally slow. I worked diligently on weekends whilst my friends were having parties disguising Passion Pop as lemonade! I did not feel deprived though, I was on a mission to succeed. My mum encouraged me to sit my HSC over two years. I adamantly refused. If the other students could do it then so could I. Stubbornness is my second nature! When I sat my exams, I used a scribe, quite a feat with my speech impairment. However, my scribe was a teacher’s aide who knew me well and was particularly essential for drawing angles in maths when my hands asserted their own authority! During exams I would verbalise my answers and was awarded extra time. Sometimes my exams were four hours long, which was extremely draining. For my final exams, I was put in a small, separate room lacking ventilation. An ‘observer’ supervised me, to ensure I didn’t cheat. We were all supervised actually and they were predominantly middle aged women knitting or reading a Woman’s Day magzine. All in all, the exams fatigued me greatly, this is why I opted for a course requiring a lower TER. But I was fiercely determined to succeed. I felt my future held promise and I was prepared to embrace the next chapter of my life.
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 emotions. In 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 meeting, I 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 now? I smiled, announcing that I would have a break and, clearly relieved, my coordinator told me 'that was the easiest meeting of this nature I’ve ever attended. Most students are extremely distraught.' However, my cool, 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 redemption. Self-loathing and reprimand captured my thoughts as I was consumed with guilt, surrounded 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. I 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 now. However, depression ensnared me like a tsunami. I began to behave in extremely irrational ways, alienating myself from friends and, as a 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. In second 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 environment, success 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 presenters. We 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 I 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 replaced with 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 course, reawakened 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.
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.
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!
by Lauren Hislop
Click a chapter link (right) to follow this story from the beginning.
Perusing through history books, there are events one may see as a blemish on our timeline. This is how I perceive my two years studying social work - it tainted my worldview for many years. In the moment of applying for the degree, I believed I was on the pathway of becoming a productive citizen. This is the moment one reads the story and screams at the main character, 'Don’t go in the haunted house!' Unfortunately, dear reader, I went into the house! I applied for social work in November 2000, convinced it was a guarantee of employment. Obviously, I failed to read the fine print. The degree was only offered at Callaghan campus. I was living on the Central Coast so, this meant relocating to Newcastle. This instilled in me a sense of excitement, however, having found out in late January that I was accepted, it was too late to find accommodation. Prior to being accepted, candidates had to meet a lecturer for an interview. I met a woman with a demure and unassuming manner. She told me I would be accepted into the course but expressed her uncertainty regarding my chance of success. However, they were 'willing to see how I would go'. I thought the comment strange, nonetheless I wasn’t daunted. Having completed a Bachelor of Arts, I only had to study two subjects each semester in my first year: Introduction to Social Work and Introduction to Psychology. The former was only one day a week, which meant I only travelled to Newcastle from home once a week. I was able to study psychology at my local campus. My cousin and his wife lived in Newcastle and they were happy for me to stay one night each week. With three young children, this was extremely kind! Mum drove me to their house on the evening before the lecture and picked me up the following day. Without the support of my mother, attending Newcastle campus wouldn’t be possible. I caught a taxi to and from campus. I had never independently caught a train, something most people without a disability probably take for granted. Unfortunately, this lasted only a few weeks, because I was unable to arrange personal care. My additional needs often presented challenges when pursuing my aspirations. I was an independent spirit and simultaneously requiring physical support. It was frustrating! At orientation, I met the disability advisor, Liz, who had a warm nature and I couldn’t help being drawn to her. Although she did share with me an interesting piece of information: there had been students with a disability who studied Social Work, however, they all failed! While this was confronting, I was determined I would indisputably succeed. But I felt a sense of ambivalence when I entered my first social work class. I thought ‘I have a degree and yet here I am, starting another one’. I resented the fact that I had to undertake an additional degree to join the workforce. However, I tried not to lose sight of my ultimate goal: to gain employment. I reassured myself that the additional study would be worth it. There were only 45 students in the class. Upon entering the room, we were directed to sit in a circle, on seats or cushions on the floor. There were three lecturers, one of whom asked us what colour best described how we felt? I thought this was a stupid question, I stated: ‘multi coloured’ to which only a few people giggled. I felt incredibly out of place with most of the other students and this had seldom occurred before. As I parked my wheelchair outside the class and strode into the room with an uneven gait, many of the young students gave me perplexed expressions. I envisioned thought bubbles above their heads: “how was someone with disability accepted into this course?” I assumed they thought people such as myself would be their potential clients and not their colleagues. I received similar vibes from some of the lecturers. Pushing aside any twinges of insecurity, I adamantly maintained the position that I deserved to be there as much as anyone else. During first year, we were placed into groups to complete projects. We were provided with butchers paper and pens. One person in the group had to write down what the other members asked. Faced with brightly coloured pens on a frayed carpet, I knew I would never get to be the scribe. Ordinarily I would not have been bothered. However, these practices seemed hypocritical, considering lecturers professed the importance of inclusion. As someone with a disability, I have had much contact with health care professionals, I have felt powerless. When we had class discussions, I would express fear about having too much power as a social worker. Many students glanced at me perplexed. Being on campus only one day a week made it challenging to foster friendships with the other students. However, as my first year drew to a close, I made a few friends in the course. I would speed across campus to have lunch with comrades who shared similar ideologies to mine. Our motive for choosing this career path was to change social structures maintaining inequality. Our pursuit was to empower people who were disadvantaged and to ensure their voices were heard. I planned to move from home on the Central Coast to Newcastle in my second year. I believed this would enable me to nurture my new friendships and dedicate more time to study. I received high marks at the end of the year and as I drifted off to sleep one Summer’s night, I felt relieved that I had survived my first year! Although I found the course extremely challenging, I reminded myself that once I had this degree, I would have the assurance of employment and become a productive, self-sufficient woman. I would have purchasing power and could make a difference to people’s lives. 'I must keep these thoughts at the forefront of my mind,' I muttered, 'Ultimately, it will transport me to the promised land: the workforce!'
by Lauren Hislop Click a chapter link (right) to follow this story from the beginning. The dream of attending a work place each day ended with the reality of being a contractor and working from home. While freedom to earn money arose from being a contractor, it came at a cost to my wellbeing. I was offered a few hours of research work . I was so excited. I was contracted to produce a literature review relating to disability service providers. Being extremely passionate about disability issues, I immersed myself in the project. Unfortunately, my excitement was short lived as it took a long time to acquire my next paid position. During this time of unemployment I volunteered at Connectability, an organisation which assists people with complex disabilities, mainly intellectual, to access social activities. My first role was as a ‘spotter’. A spotter is someone who watches clients in a hydro pool and alerts authorities if clients are experiencing difficulty. I genuinely don’t know how productive I was, however, it allowed me to venture out of my house. Rather than staring at my stark four walls, I was thrust into a vibrant environment. I relished the interactions I had with co-workers and clients, it diverted my attention from the reality of my employment situation. I also volunteered with Community Disability Alliance Hunter (CDAH) by serving on the board of management. During my time at CDAH, I networked with various people. As a result I gained contract work in differing tasks, such as research, writing and assisting in social media. Working from home as a contractor enabled my creativity to soar. However it also was a recipe for overworking. I was my own worst enemy, tying myself to my pc without having a morsel to eat all day. My partner often came home to an overtired, famished and irritable woman. My hair would be in disarray and there were deep, dark bags beneath my eyes. I was an empty shell. My perfectionism would rear its ugly head as though I had an addiction. I couldn’t stop. My next high was my next project. I never considered that my tendency to burn the candle at both ends might result in me being unintentionally exploited. One woman, let’s call her Jenny, contracted me for a few months. She paid me for three hours a week. Consumed by my need to be a perfectionist, I would work more hours unpaid. This would backfire as at the close of each week, I would be physically and emotionally spent. Riddled with the fear of being inadequate, I would be chained to the key board until the wee hours of the morning. Whilst my neighbours nestled in their beds, my lit monitor would illuminate my room. The sound of my fingers tapping unendingly on the keyboard was piercing the night’s silence. This directly affected my health but I was obsessed. I must do it perfectly. Due to my over commitment to my paid work, I stopped my voluntary work which exacerbated my isolation. Throughout the months, Jenny would ask me to work more for no extra pay. Initially I was eager to comply, like a enthusiastic young puppy desperately seeking approval from my master, but as my workload increased, I became more exhausted. This placed a strain on my physical and mental health as my partner would routinely return home to a wild beast waiting to prance at any comment perceived to be directed at him. Dudley said this overworking had to stop. Noticing the exasperation on his face, I knew he was right. I had to open the discussion with Jenny, conveying that I would need remuneration for the extra work. I Skyped her from my kitchen table, gently informing her that the extra work consumed more time and requested remuneration for my extra effort and time. Suddenly her eyes were veiled by a fiery rage. ‘I don’t have extra money to pay you. Why can’t you do this?’ she barked in a belligerent tone, resulting me in cowering in the shadows. I tried to change her perspective but as a new contractor, I wasn’t versed in negotiating. I felt as though I was on an uneven footing. Not having an employment consultant, I was on my own and I was burning out. This was having a detrimental impact on my health as well and resulted in having more painful discussions with her, ending each chat with me struggling to deter my tear duct from activating. Early one morning, I felt as though a wild crazy person was stabbing me with a knife in the abdomen. After undergoing tests, I was eventually diagnosed with a fecal impact. Ultimately, my health contributed to my decision to resign from this position. Although I could use the money, the toll it placed upon my mental and physical health exceeded the financial gain I received from it. In order for me to sustain work I was aware that I needed a work-life balance. However I did not know how to achieve this. I needed the assistance of an independent consultant to guide me. Miraculously the NDIS granted me funding for employment support. Was this a dream? Was I able to use the services of independent consultants for employment services? YES! I was put in touch with a woman named Lou who worked for an organisation called Response. Lou looked at my credentials. Her deep brown eyes sparkled with enthusiasm as she announced she had a position for me involving writing and research for 2-3 hours per week. My body pulsated, I could hardly contain my excitement. Not only was I offered work, Lou started to teach me the fundamentals of achieving a work/life balance. My life was back on track!
by Lauren Hislop Click a chapter link (right) to follow this story from the beginning.
A new dawn upon my horizon offers the promise of a crisp autumn day and the staleness of summer dissipates. “This is a new beginning” I pondered, as I drove my electric wheelchair around Ourimbah campus. I was feeling excited and hopeful, two emotions that had become unfamiliar to me. Studying here felt like home, this was the place I had started my uni life and was as comfortable as a pair of old jeans that fitted bloody well! Dragging my laptop bag behind me upon entering my first lecture, I felt a sense of solace. The students were varied in ages and with hardly a remnant of awkwardness, it all seemed quite easy to me. With significant credits from previous studies, I wasn’t required to take many subjects, leaving me the option to complete my degree in two years instead of three. However, after chatting with the course coordinator I opted for 3 years of study, taking pressure off with only two subjects each semester and allowing my confidence to return. Majoring in community welfare, was to my surprise the right choice for me, its focus on how policy directly impacts on individual lives resonated and a burst of optimism pulsated through my veins. My confidence soared at the end of semester, when with uncoordinated fingers I logged into my student portal, to find distinctions awaiting my attention. I had indeed recovered from my fall in social work! Many serendipitous encounters occurred during this time, including developing a connection with Basil, a taxi driver with an accessible cab who after one trip, offered to be my regular driver. Many stories have unsung heroes and Basil was one of mine. A retired surveyor, he often recounted tales of his career and with a spirit of gentle generosity and humility, he was an inspiration. On one occasion after bringing me to campus, I reached in my bag for my purse only to find it wasn’t there, I was distraught. After my profuse apologies, Basil smiled, grabbed his wallet and insisted I take five dollars in case I needed something, I was touched. I also became friends with fellow students Caroline and Kim, we would regularly catch up and support each other. They would often seek my advice because I had degrees and this was a real confidence booster, it all balanced out with my request for their assistance to pour a cup of tea! I recaptured a sense of camaraderie I had been missing for so long. I was in a state of perpetual motion in my second year with four subjects during first semester and although tired, I achieved decent marks. In second semester we had statistics, this was a terrifying prospect considering my absence of a mathematical brain. I sat in lectures, diligently typing on my laptop and whilst I may have appeared to know what the lecturer was talking about, in all honesty I didn’t have a clue! Fortunately for me, the statistic component was only worth 50% of our grade, if it was more, I wouldn’t have passed. During second year I was approached by one of my lecturers Michael Howard, who believed I had an aptitude for research and policy writing. He asked if I would consider honours, saying it would be an invaluable qualification. I trusted him, he worked in policy development in Canberra and I was so excited I think I accidentally drove over his foot! The prospect of being renumerated for pursuing my passion, brought me closer to the pot of gold at the end of the rainbow. My future suddenly felt illuminated with clear direction, I would be a researcher. In my third year I was focused on achieving high marks, so I could progress into honours and when my degree was nearing completion, I felt a sense of achievement. I was back on course! When I graduated, I farewelled my fellow students and we all went on different paths, mine was towards an honours degree. From the onset of my honours degree, I immersed myself in academic journals in preparation for my thesis. Michael was my supervisor and the topic for my thesis was the effect of the Welfare to Work Act on the employment situation for people with disability. In 2005 under John Howard, the government implemented the Act to increase employment outcomes for people with disability. I predicted it would be a colossal failure because it came from the premise that the unemployment rate amongst people with disability, was due to a dependency on income support. Not surprisingly, their solution was to restrict the eligibility of the Disability Support Pension (DSP). After the act was implemented, those applying for the DSP, were only successful if they were unable to work 15 hours per week, reduced from 30 hours. Those who were no longer eligible were placed on Newstart. Whilst I wasn’t directly affected by the act at this stage, I was outraged. Many people with disability have a deep desire to work, however, extenuating circumstances such as employer’s discriminatory attitudes made this difficult and the Act stood to cause even greater financial disadvantage. I kept my emotional response in check, I was now a researcher and needed to gather facts and keep an open mind. In addition to our thesis, we had to attend a weekly seminar at Newcastle campus. As I was living with mum, I would catch the train up. I think my lecturer and my peers were both impressed and horrified when I strode into the lecture on one occasion with blood on my arm. I had fallen on the platform and continued to uni. “Proof I’m dedicated,” I thought! I wanted to survey people with disability affected by the Act. Whilst researchers were theorising about the act, it was time to ask the experts; people with disabilities, so I designed a survey. I hoped that this would provide a human testimony. I had to gain ethics approval at the uni, which was a lengthy process. Once approved I asked Centrelink to distribute my survey to some of their clients. After prolonging my degree and waiting months, I received a negative response, this was frustrating! Not to be deterred, I approached a disability employment agency who also stuffed me around with a long response time and unfavourable outcome. I decided to undertake a literature review instead and in the last few months of completing my thesis, I was attached to a PC for up to ten hours a day. Our family computer was in the living room, I had papers strewn constantly across the floor and Mum referred to it as the ‘white out’. I’m still astounded by mums patience, she provided me endless cups of tea and was successful getting me to occasionally eat. I grew extremely fatigued, I was my own worst enemy, constantly updating information as a result of reading further articles and research papers. Thankfully I had a due date and when it arrived, I breathed a sigh of relief knowing my study days were finally over. Whilst I was keen to join the workforce, I planned to have a break, catching up with friends and reacquainting my skin to sunlight! In memory of Basil