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shirley temple

Get a Hair Cut and Get a Real Job – by Lauren Hislop

By | Disability, News
Lauren Hislop Writer

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.

Lauren Hislop Blogger on Disability

Living with Disability (1)

By | Disability, News
Lauren Hislop- blogging about living with disabilityHave you ever lived with a puppy, one which becomes your beloved family pet? Whilst you watch Netflix, it nestles in your lap, an intrinsic part of your life. However, after a long day at work, when you open your front door to be greeted with dog excrement, your endearment to the pooch wanes.

Living with a disability is similar to this situation, while I have embraced mine, it has its unique challenges.

The body I inhabit is always ‘currently under construction’. My disability affects every muscle, resulting in my gait being extremely unsteady and I walk as though I’m an accident waiting to happen. My speech is slurred, most people require subtitles to understand me. I appear as though I’m permanently intoxicated.

My disability is purely physical, it doesn’t affect my intellect in any way. I was accepted into university on my own merit and have three degrees.

My disability hasn’t prevented me from experiencing the richness life has to offer. However, there are challenges and some of the most confronting, are people’s perceptions and reactions towards me.

As I step out of my front door, dragging my contorted body along the pavement, I’m met with a sea of stares. Many feel entitled to gawk at me and I feel like a thousand paper cuts are pulsating through my body.

I’m a celebrity without renumeration. I realise people gaping is often due to ignorance and in most cases I ignore or smile. However, occasionally I snap and say “would you like a picture?” Most decline the photo opportunity. If I feel playful, I smile and say “sorry I’m taken”.

My unsteady gait and slurred speech, also causes many to believe I have the intellect of an infant. Their tone of voice alters, pitch rising as they condescend.  I’m frequently addressed as a ‘good girl’ and whilst I aim to have a Zen like attitude, sometimes this aspiration goes out the window.

For instance, once, as I was walking to the sink in a public toilet, a woman who emerged from a cubicle, instructed me to ‘go clean your hands like a good girl’. I was infuriated. How dare she patronise me, I thought. My face turned crimson, a wave of indignation came over me. I cleansed my hands, violently, and without sufficiently rinsing the soap suds from my palms, I stormed out. If my speech was crystal clear, I had a list of retorts on hand, I can assure you they were not G rated.

On another occasion, I sat at a table while my partner bought our meals at a club. Two elderly couples across from me, began vocalising their paternalistic concerns that I shouldn’t be left unsupervised.  I guess they had a point, they did look dodgy!

In most cases I try to explain I am intelligent.  When my partner and I first started dating, he was surprised that whenever I met someone, I would automatically announce to them I had three degrees. He thought it hypocritical and elitist from someone who professed to be a socialist. However, by spending more time with me, he understood the rationale behind the introduction.

Many people have limited understanding of cerebral palsy and require education. However, I feel enraged when condescending attitudes remain even after explanations are provided. For instance, my partner conveys to someone that I’m intelligent with uni degrees. They turn, looking toward me, saying, “you ARE a clever girl!" Sadly, the perception of people with disability being intellectually inferior is so ingrained. Ignorance moves into arrogance, which is extremely difficult to deal with.

People often express to me they find me inspirational simply for completing ordinary tasks. I once attended a job interview, during which I was praised for getting to the venue ‘all by myself’.  I had no idea that catching a cab was so impressive. My notion of inspiring action involves reducing world hunger. Placing witticism aside, it’s frustrating that people have such small expectations of me due to my disability. As I ventured home, ‘all by myself’, I knew I wouldn’t be offered that position.

Despite encountering prejudicial attitudes, I have also experienced empathy and inclusion. My friends and family value the essence of who I am. I have experienced the best of humanity. People generally yearn to understand.

So next time you see a person with a disability, don’t be filled with fear or curiosity. We are really not that fascinating. I can assure you, your Facebook feed is probably more captivating!

Here is Stella Young's TED Talk: I'm not your inspiration

About Lauren:

Lauren Hislop is a social researcher, writer and a passionate disability advocate. She has been a blogger for various organisations. Lauren has been known as a professional uni student. She is a member of HWC, living in Newcastle with her partner.

Lauren Hislop- blogging about living with disability
clock

Living with Disability (2)

By | Disability, News
Living with Disability - By Lauren Hislop

I’m a university educated, liberated woman. The lyrics of ‘I’m a woman hear me roar’ are ingrained.

The incongruency of being an extremely independent spirit, dwelling in a vessel unable to be self-sufficient, is conducive to anxiety and frustration. Have you heard the adage “he/she may be academic, but they can’t tie their shoes”? Well, I profess to be one of those people.

My disability provides me an unsteady gait and limited hand function, making the daily task of showering and dressing incredibly difficult.

Assistance to start my day is an integral part of my existence. Without this, I wouldn’t have the opportunity to enjoy the richness of life. I wouldn’t have been able to walk the ivory halls of uni, scour the shelves of bookshops, enjoy lunch at a café with a friend, or stroll through an art gallery with my partner.

Monday mornings. People are usually frantic to get to work. They leap into the shower, have a quick injection of caffeine, take a glimpse at their Facebook feed and then start their journey to work.

Mine are quite different. I’m sitting in my pyjamas, near the front door, anxiously glancing at the clock. I’m waiting for a support worker to help with personal care. The choice when to have a shower is granted for most. I have limited control over the timing of mine.

I look at the roster of support staff to confirm the worker is very late. Time is passing.  A surge of panic overcomes me, I have a doctor’s appointment in an hour. My heart skips a beat, I must be ready soon. I phone the agency to be told the time had changed, the worker would be another hour. I miss my appointment and am outraged.

What I have described was not a ‘one off’ occurrence. My days were dictated by others. I yearned for emancipation.

Fortunately, I worked from home. I seriously doubt my boss would have accepted my regular tardiness due to inconsistent personal care. Picture it, “So Boss, would you like me prompt and stinky OR clean and late?”

Workers I had never met, would arrive at my door. I would hear a knock and a sense of trepidation grew as I stumbled towards the door. I was a contestant in a game show. I assure you, what was on the other side of the door was never the promise of a new car.

I open the door, after a brief exchange, I’m ushered into the bathroom and stripped naked. I’m rendered extremely vulnerable. Usually, strangers require a certain amount of alcohol before they strip in front of each other. I wasn’t offered a drink!

With no prior knowledge of my background, many workers patronised me. I resented this in the sanctuary of my own home.

I felt dehumanised, just another ‘job’, not perceived as an individual, with a mind and heart, and all the complexities associated with being human. My autonomy had vanished and at times I felt unsafe, surrounded by bathroom tiles. I distracted myself with tunes in my head, conjuring images of the workers in similar compromising positions to mine.

I imagine most people maintain a clear dichotomy between private and public, requiring personal support renders that divide extinct. 

Sometimes, comments were made regarding the state of my house. I wanted to say “Sorry, I didn’t expect I had to bring out the duster before your arrival”. Reluctantly I swallowed this bitter pill, I needed the assistance.

Attending catholic school, I had a regular dose of guilt, and a compulsion to feel grateful for any crumbs of assistance I may receive. I was allowing myself to be treated with less than respect. I did assert myself at times though, with ‘involuntary’ movements, splashing the workers and claiming innocence.

The advent of the NDIS has provided more choice and control. I now vet my workers prior to letting them into my home. A meet and greet before stripping!

I am constantly perplexed how people without disability, often consider those who need extra support to be extremely dependent. Walking past gyms, I see ‘personal trainers’ aplenty. In our western society, we are all interdependent. People go to the supermarkets and purchase vegetables, grown by others.  If you think you’re totally independent, what would be your reaction if your internet ceased working?

I rest my case.

I hear a knock, my worker is here, I must end this rant, and yes I know who is behind the door.
About Lauren:

Lauren Hislop is a social researcher, writer and a passionate disability advocate. She has been a blogger for various organisations. Lauren has been known as a professional uni student. She is a member of HWC, living in Newcastle with her partner.

 

Lauren Hislop- blogging about living with disability
girl having fun in wheelchair

Living with Disability (3)

By | Disability, News

 

As I stumble down the supermarket isle, my eyes gravitate to the word ‘special’. Whilst I yearn for a bargain, I have a sense of utter aversion to that word. ‘Special’ conjures negative memories of starting school, it equates with segregation and confinement.

I was placed in a ‘special unit’ at a mainstream primary school, my peers had both physical and intellectual disabilities. We had classes within the unit and were permitted to play with ‘mainstream’ students, during recess and lunch.

Our classrooms were wooden buildings separate from the mainstream school, magnifying our differences. Although there wasn’t a physical barricade, an invisible force field existed and I knew if I crossed it, I would be penalised.

I struggled to grasp why I was prevented from being with the other students. My differences were amplified when staff placed a helmet on my head, before I ventured out to play. This was done for safety, I had a tendency to frequently hit the pavement. I remember, trying to convince other students, I had a motorbike parked behind the class room. I was adventurous. When playing outside the unit, I would climb trees, quite a feat with cerebral palsy (CP)!  Staff would recognise me by glancing at my knees, constantly grazed and occasionally dripping with blood. I never grasped the word caution.

I was an intelligent child and loved learning. However, CP made writing and speaking laborious tasks. In kindergarten, I was granted a type writer. This was an intrinsic moment, I could now clearly articulate my thoughts, the machine became both pencil and voice, it was emancipating, opening a whole new world.

The environment wasn’t conducive to learning. While I was devouring Enid Blyton books, my teachers provided me texts containing simplistic sentences. I craved stimulation. Learning tasks were not matched to my cognitive ability and I completed them rapidly, with no provision for extension. I was denied the same curriculum as able bodied children and felt stagnant.  Fortunately I went to the library often, I was content to read.

Most days after school, enjoying my ice cream soda, with the remains of cream dripping on my chin, I would question mum why I couldn’t attend school with able bodied children. She would glance at me sadly, perplexed how to explain the workings of systemic discrimination to a six year old.

When my younger brother Dean, started at the local catholic school, I was incensed. My outrage reached its pinnacle, after attending his school mass. When mum picked up her bag to depart from the pew, I burst into tears, raining down my cheeks as a monsoon. “Why can’t I go to this school mum? Dean does!” That question sparked my mother’s quest to gain me entry into a mainstream school. Over the course of a year, she wrote letters and attended meetings over weak tea with school officials. I had to sit tests, proving my cognitive capability. I was confident my results wouldn’t disappoint and I was correct.

Wham! In 4th grade I was accepted. I was a bird released from a cage. I desperately yearned to fit in, to prove I was just as smart or stupid as my able bodied peers. I was openly embraced by the other students and finally tasted inclusion. Friends would love speeding my wheelchair through the playground, I fell out a few times, my stomach aching from laughter.

In high school, I remained in mainstream classes using humour to gain acceptance. For instance in drama, during a ‘say and act’ lesson, I told the other students to walk ‘like me’, producing raucous laughter.

I allowed students to take turns in my electric wheelchair. It was a novelty and my popularity grew. Sadly, my increased popularity was short lived. My class mates and I were all assembled in the hall one day, to hear the Principal's voice, magnified through a microphone, demanding the wheelchair be used only by me. As an adult, I’m aware of the health and safety implications, however, at the time I felt as though the school administration was maintaining demarcation between the other students and me.

In my senior years, I achieved high marks. I was extremely fortunate to have nurturing teachers, with strong beliefs I would be accepted into university. My future became full of promise, aspiring to earn a degree and become a productive citizen.

As I hold, with wobbly hand, the marked down product in the supermarket, ‘special’ equates with 'cheap'. I chuckle, I’m definitely not cheap, my partner can attest to that!

 

About Lauren:

Lauren Hislop is a social researcher, writer and a passionate disability advocate. She has been a blogger for various organisations. Lauren has been known as a professional uni student. She is a member of HWC, living in Newcastle with her partner.

 

Lauren Hislop- blogging about living with disability
Sign: looking for a job

Living with Disability (4)

By | Disability, News
Lauren Hislop Blogger on DisabilityI started a Bachelor of Arts a few months after high school and was the model student, with a propensity for caffeine induced procrastination. Most of my time was spent navel gazing, and basking in the sun. My peers at university, accepted my intellect separate to my disability. I was accepted on merit and received high marks. 

One could find me in the library sitting on the floor surrounded by books. I was also intimately acquainted with the cobble stones on campus and, unlike other students, alcohol or mind altering substances were not to blame.

At my graduation ceremony, rather than use the stairs with my peers, I was able to walk up the ramp behind the stage. I assumed the staff didn’t want me to crawl up the stairs, prolonging the ceremony and showing off my undies. At the side of the stage, anxious about tripping on my bat cape, I heard the Chancellor call my name. My heart pounded, dodgy legs proceeding to carry me across the stage. My head suddenly felt lighter - my graduation cap had fallen off! However, I continued marching forward, my cap remaining awkwardly on stage behind me. The Chancellor appeared a mix of beaming and perplexed. Perhaps thinking “we awarded you with a degree?’’ As I chuckled to myself, I thought of the response, “Yes you did award me with a degree! No backsies."
When I saw my mum, she gave me the warmest hug, then she released exclaiming, “quick, find your cap or we’ll have to pay for it!”

Emerging from a university environment, feeling accepted and valued, was in contrast to the job market where I felt rejected.  I started this blog series professing to be a procrastinator, but the truth is I was extremely conscientious. I worked at my PC in the middle of the night, sipping my luke warm tea through a recycled straw. It was ingrained in me to work twice as hard as able bodied people in order to gain an equal footing. This notion would have serious consequences later, when overworking impacted upon my health.

I am a socialist, feeling ambivalent towards capitalism, and yet I am eager to earn a crust. I have always yearned to be a productive citizen and imagine Karl Marx to have had a similar feeling.

Unfortunately, my dream was thwarted by discriminatory attitudes held by employers.

Perhaps after graduating I had false expectations and whilst the stereotyped outcome of gaining a Bachelor of Arts degree is ‘do you want fries with that?’ I seriously doubt a fast food chain would hire me. The unpredictable nature of my movements would leave a trail of chips on the floor, with burgers being transformed into meat patties and salads. My career in the fast food industry would likely solve the obesity epidemic!

After a year of relentlessly applying for positions, I decided to enrol in Social Work at university. I studied this for two years, switching to a Bachelor of Social Science and then obtained an Honours degree. I naively believed degrees would be automatic tickets to work. In my experience, many employers have an entrenched idea that people with disability are not viable, Not only is this a fallacy, it is downright insulting.

I also believe a perception exists within our general community that people with disabilities are unproductive. Recently, I was at a club for lunch with a group of people. One of them, not known to me, asked in a condescending tone, “so what do you do all day?’ I took a deep breath and told her “I’m a contract researcher and writer”.  I felt rage simmering inside of me; it was as though she assumed I didn’t have a profession and that I just play with sock puppets or indulge in day time TV. Most of us with a disability do work, however, we often sneak through the back door to do it.  

Before I wrap up my diatribe, please consider my potential for working in the fast food industry. If you are looking to hire a worker excelling at food spillage, please contact me.

My aspiration has always been to become a productive citizen.  The trajectory towards this goal has never been straight forward. I have encountered many obstacles along the way. Are you curious to hear about my unpredictable journey to employment? Stay tuned for further blogs from me in 2020.
About Lauren:

Lauren Hislop is a social researcher, writer and a passionate disability advocate. She has been a blogger for various organisations. Lauren has been known as a professional uni student. She is a member of HWC, living in Newcastle with her partner.

 

Lauren Hislop- blogging about living with disability