‘When you’re speaking to a patient who is deaf or hard-of-hearing, make sure you’re facing them,’ the educator explains before clicking to the next slide.
The hospital’s disability awareness training is optional and just a handful of people have shown up. I’m sitting next to another physiotherapist from the 2010 new-graduate program. I pretend not to notice that he is starting to nod off. Apart from when we scoff down lunch, this is the only chance we’ll have to sit down and rest our feet. Each day we race from ward to ward, trying to work our way through the list of patients, knowing that tomorrow the list will have grown again, bolstered by new referrals.
‘And please turn down the volume of their television sets before starting your consult. This will reduce the background noise,’ the educator says.
I’ve already gotten into the habit of turning off television sets before commencing any physio sessions. Though, I’ve been doing this for my own benefit. And even with the television switched off, I still have to lean in when the patient speaks as often there are several other televisions blaring nearby and machines alarming and medication trolleys rattling past. Once home, it takes until bedtime, or even longer, for me to unwind after hours of being coiled in tight focus.
‘Try not to yell or exaggerate your words. Most deaf people rely on reading lips and yelling will exaggerate your facial features.’
I feel a sharp jag of jealously. I wish that my colleagues would: flag my attention before starting conversations; speak slowly and clearly; ensure that their faces aren’t shrouded in shadow or backlit; allow me to sit or stand on their left side so I can hear them. But none of them know that I’m deaf.
The first time I saw a dead body wasn’t shocking. It looked exactly like the photographs I’d been studying in my spare time. You see, when my sister started university in 2005, I leafed through her anatomy textbooks instead of preparing for my final high school exams. And so, when I enrolled in a physiotherapy degree I’d already spent a year looking at photographs of deconstructed bodies: limbs skinned and deboned; ribbons of muscles untethered and fanned out across tabletops; the kidneys and liver scooped out of the thorax and given their own portraits in the textbook.
During my first anatomy lesson, I learned not to refer to them as ‘dead bodies’ but as ‘cadavers’. The newness of the word placed these body parts at an even further remove from what felt familiar, and truthfully, what seemed real. After all, these cadavers reeked with the sharp tang of formaldehyde, a chemical that arrests the process of decomposition by turning soft flesh stiff and leathery. I leaned in close and with a gloved hand touched a dissected leg.
When I left the anatomy lab, I saw people as a series of moving parts. Knowing that beneath their skin there were distinct layers of muscle, viscera and bone arranged with an almost geological quality like strata.
The French have a phrase for how our occupations unconsciously and continuously inform our worldview: déformation professionnelle. Chefs might use the seasons of fruit and vegetables as a way to earmark the passage of time. Engineers might automatically assess the structural integrity of each bridge they cross or staircase they ascend. During my four years of training to become a physiotherapist, I was taught the medical model of treatment. In essence, I learned the correct ways a body should function, as well as all the ways it can fail or falter. I also learned to keep my disability a secret.
In her essay ‘A Writing Life’, Annie Dillard ruminates about how our bodies are shaped by work. Dillard notes that ‘In working-class France, when an apprentice got hurt, or when he got tired, the experienced workers said, “It is the trade entering his body.”’ I wonder when my trade entered my body – was it when I first lifted up a leg to examine someone’s bones? I can remember the sharp pain in my shoulder as I had underestimated both the weight and sheer awkwardness of bending and straightening someone else’s knee. Or did my trade begin to shape me when I slipped my t-shirt over my head and stood in front of my classmates? My posture mimicked an anatomical drawing – chin level, expression neutral, arms stretched long and palms facing forward – despite my instinct to cross them high and tight over my chest as they began to assess my muscle tone. Or did my trade settle in my body while I was studying anatomy? Sitting at my desk, textbook open, I would palpate my own muscles to understand their shape and location, and in doing so I would leave bruises, deep blue and green, scattered along the length of every limb.
Regardless of when my trade first entered my body, by the end of my new-graduate year – a year of racing through hospital corridors, a year of assessing bodies quickly and decisively, a year of laying my hands on hundreds of patients – the changes were clear: my palms had collected callouses and the webbing alongside my thumb had thickened into dense muscle; my eyes were now quick to detect abnormalities; my feet no longer throbbed by the end of each workday. And as I looked for my next job, I knew I won’t mention my deafness on my CV or in any interviews, as it would be considered a risk, a liability.
In Australia, deafness is a strike against your name. Despite improving access to education, the deaf unemployment gap is wide. In 2015, the Australian Bureau of Statistics noted that the employment rate of deaf and hard-of-hearing (DHH) men of working age (15 to 64 years old) is 67%, which is 13% lower than men without hearing loss. Only 56% of DHH females are employed. These statistics only tell half the story. Most DHH people are working part-time hours in low-paying roles and experience limited career progression. The economic term for this is deadweight loss: ‘also known as excess burden or allocative inefficiency, is a loss of economic efficiency.’ A recent Hearing Care Industry Association report found ‘the total deadweight losses associated with hearing loss were estimated to be $1.6 billion in Australia in 2017.’ In 2017, I was a deadweight.
Australia has a long history, socially and legislatively, of labelling disabled people as burdens. ‘Those who are receiving welfare support,’ write researchers Simon Darcy, Tracy Taylor & Jenny Green from the University of Technology Sydney, ‘are subjected to a neoliberal governmentality where they are made to feel inferior to those in paid work through political and media discourses that challenge their worthiness to receive benefits, their trustworthiness, their level of disability and the burden their disability places on the economy.’
I think about my working life, which, for the past sixteen years, has consisted of periods of part-time work, short spurts of full-time work, stretches of burn out, and overall limited career progression. As my work history has wavered, so too has my health. Hindsight allows me to see this boom and bust cycle. A cycle I had failed to understand until my early thirties. Not from a lack of dissonance, as my body was so obviously weighed down with fatigue and frustration, but because I kept trying to find solutions. This, I realise now, was my déformation professionnelle. I was trained in the medical model, which proposes that, as argued in Controversial Issues in a Disabling Society, ‘Any economic or social deprivation encountered by people with disability is located within the individual and their impairment’. I believed that I was the problem.
According to disability scholar Professor Tom Shakespeare in The Lancet: ‘Evidence is mixed on the impact of education on medical students’ attitudes towards disability. Professional training can lead to an erosion of empathy and growth in cynicism. Some studies have found that medical students have more negative attitudes to disability than the general norm.’ Shakespeare hypothesises that this is because many healthcare courses medicalise disability – labelling the body as working or malfunctioning, normal or abnormal, right or wrong – without considering a person’s autonomy and human rights, ‘as a result, most students are sympathetic and display concern but have negative views about the experience of living with disability.’ In other words, I had diligently trained myself to view the world, and my own body, through an ableist gaze. Without having any other words, or ways of thinking, I didn’t realise that my career could be approached differently. Instead, throughout my twenties, as I shifted from one job to the next, I desperately tried to make my body fit into work environments.
In 2017, the estimated lost wellbeing from hearing loss in Australia was $17.4 billion, found the Inquiry into the Hearing Health and Wellbeing of Australia. In part, this is thought to be due to the physical and psychic stress experienced by DHH (deaf and hard of hearing) people trying to live in a hearing world. The compound effect is devasting. According to Noway’s HUNT Study, hearing loss is associated with a higher risk of premature death due to cardiovascular disease. My own heart is so used to thrumming through the tight grip of anxiety that I only notice my hypervigilance, my rapid pulse, my jittery temperament, whenever I see friends and family and flatmates unwind with a level of ease that feels unattainable.
Researchers have found that single people with hearing loss are at an even higher risk of premature death. I think about how I’ve deleted dating apps within hours of downloading them. I’m neither shy or introverted, but the thing I love most, or really need the most, after each workday is to sit in quiet, unpeopled spaces. As I’ve gotten older, I have become stricter at conserving my energy, including prioritising sleep over socialising, avoiding environments that demand keen focus such as bars, pubs, cafes, restaurants, cinemas and so on. As when I am edged into sensory overload, everything goes tasteless and numb. I fall listlessly into rituals. My thinking becomes thick and slow. And so, I try to save my strength for things that matter – namely staying employable.
DHH people live longer if they have a partner who is hearing. Not because love keeps hearts healthy and strong, but ‘being in a relationship may also serve as a buffer against the detrimental economic consequences of hearing loss.’ As someone who has been single for so long, I wonder, can a heart falter and break if it feels numb?
After dedicating years of scholarship to workplace accessibility, in 2015 David Baldridge from the College of Business at Oregon State University summed up all the available research: ‘Simply put, people with disabilities appear to face a straightforward yet troubling question, “if I ask for a needed accommodation, will I be better or worse off?”’ This question, I realise, has become so innate, so reflexive, that I can’t even imagine what it would be like to not have to calculate risk. My fear feels corporeal, so full of consequence.
Research shows that disabled people make an informal risk assessment before making any requests. This assessment typically consists of the following questions: will the answer most likely be yes? has anyone else at the organisation got a disability? if so, has that person received any accommodations? and, how will my colleagues react? So even if accommodations are needed, often the risk of reprimand, ridicule and rejection is considered much too high.
I’ve only requested workplace accommodations once. I was twenty-nine years old and working in an entry-level admin job. A small part of my role involved typing up meeting minutes using audio recordings. After several attempts to complete the task, I realised that I couldn’t understand the conversations without reading lips. Having recently learned about Disability Pride, a concept that is the complete inverse of the medical model, I felt, for the first time, brave enough to talk openly about my deafness.
When I disclosed my deafness to my manager, and asked if I could attend the meetings, she said – you just need to practice. And so, I did. I showed up early and left late. I shoved my headphones tightly into my ears. I turned up the volume so loud that my colleagues could hear the babble of voices, which to me, still sounded meaningless. The next time I spoke to my manager, she said – you just need to try harder. Not long afterwards I resigned.
The sentences in the Disability Discrimination Act (DAA) 1992 look lean, almost supple. Their apparent simplicity suggests a bold, no-holds-barred approach to equality. And yet, despite the legislation being enforced since 1993, the disability unemployment gap remained mostly unchanged and since 2012 has been widening.
The DAA hinges on the phrase ‘reasonable adjustments’, a strikingly ill-defined set of words. Of course, bodies are unique and the DAA needs to be flexible; however, it is left to the discretion of employers to act in a reasonable manner. Our bodies are shaped by work, with both mind and muscles strengthening by the repetitions of our days. And so, when employers are asked to assess how reasonable adjustments are, this judgement has been influenced by how they work. And so, it’s not surprising that the 2017 Disability Confidence Survey found 59% of small-to-medium-sized Australian enterprises don’t even consider hiring disabled job applicants. When questioned why, 36% of the businesses claimed that ‘our type of work doesn’t suit people with disability’. Frustratingly these employers truly believe that they are being reasonable. They literally cannot see the world, or their work, any other way, as they are, after all, judging potential applicants via their déformation professionnelle.
The word ‘reasonable’ is also used in America’s disability discrimination legislation. American disability law scholar Carrie Basas notes that it has been applied liberally ‘as an imprecise, bias-laden, pro-employer conduit for attitudinal barriers and misconceptions about disability.’
Of all the complaint cases received by the Australian Human Right Commission (AHRC) the vast majority relate to disability discrimination in matters of employment. In 2016, researchers from the University of Technology Sydney examined all available complaint cases received by the AHRC in relation to disability discrimination, and in doing so they found a clear trend that ‘employers misunderstood key legal concepts that underpin the DDA including: unjustifiable hardship; inherent requirements; reasonable adjustments; direct and indirect discrimination.’ The way the DDA has been constructed ‘assumes that employers wish to deal with disability, whereas previously stated research suggests that many employers overlook, omit or deliberately discriminate against this group.’ So, while the legislation promises human rights, in practice it is often only used as a cost-benefit analysis.
It’s clear that the sentences in the DAA lend themselves to abstraction and linguistic malleability that safeguards the status quo. In a global context, Australia is ranked 29th out of the 29 countries in the OCED, as we have the lowest rates of employment of disabled people. The DAA is being used as a brutally effective tool to strike disabled bodies from employment.
After graduating from university and leaving the cool stillness of the anatomy labs, I realised (or rather remembered) that bodies are more than just moving parts and that unlike machines, bodies are unpredictable. Bodies have histories, muscle memories. As my déformation professionnelle shifted to accommodation this reality, I realised that I’d chosen a career that demands careful and close listening. Over time I’ve realised that rather than limiting me, my deafness allows me to be good at my job.
Each day I have conversations in which people reveal their bodies and pain, both physical and emotional. Because of my hearing loss, I am never casual or distracted, instead I listen keenly, wholly. I never make assumptions. I always check if every patient feels heard and understood.
To explain to an employer that my deafness makes me a careful and attentive listener feels risky. After all, it defies common expectations. So, while I believe that my deafness makes me an empathic health care professional, especially given that the majority of my patients are DHH, I am still hesitant to disclose it to my colleagues. As even though they are often kind, ordinary, reasonable people, I fear that they will say: Our type of work doesn’t suit people with disability.
The Law Institute of Victoria has been critical of the complaints-driven function of the DAA, as ‘people are required to pursue legal action to achieve their entitlement to freedom from discrimination. It seems crucial that some form of guidelines or standards covering all the areas in which discrimination is prohibited under the Act be developed.’ Given how rife disability discrimination is ‘every attempt should be made to find means of clarifying the community’s obligations under the Act.’
Research shows that employers aren’t likely to treat disabled people equally unless they have had direct experience of disability. Equality only seems reasonable when you’ve experienced inequality, or to paraphrase the poet John Keats, axioms are not axioms, until they are proved upon our pulses.
How might our collective future change? Perhaps, we should start asking everyone: what do you need to do this job?
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