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.