Most people don't realise that I am deaf unless I tell them. My deafness is invisible. I don't wear hearing aids and my voice (though distinct enough to prompt people to ask 'where are you from?') isn't a typical deaf voice. Every day I make small calculations, assessing every interaction to determine if I need to reveal that I have a disability. If I make a miscalculation, the consequences can be rapid and irreversible. Often, I find it easier to self-manage miscommunications than to feel the slap of stigma.
Concealing a disability is not an unusual situation. Approximately 1.5 billion people have a disability. Yet, only 12 per cent choose to disclose it. Hundreds of millions of people around the world are concealing themselves out of fear of social stigma and economic disadvantage.
In Australia, despite the protections created by the Disability Discrimination Act 1992, little has changed in the intervening decades. Disability discrimination still accounts for the highest volume of complaints the Australian Human Rights Commission receives each year.
In Australia, there are no legal obligations to disclose that you have a disability. When I graduated university, I didn't tell any prospective employers that I have an invisible disability. If I had, I might be still looking for a job. A 2015 survey by Graduate Careers Australia found that 'Graduates with disability take 56.2 per cent longer to gain fulltime employment than other graduates'.
Even once a disabled person has secured employment, things don't necessarily improve. The Australian Network on Disability note that 'People with disability aged 15 — 24 years are 10 times more likely to experience discrimination than those aged 65 years and over. The source of discrimination is an employer in almost half of those instances'.
Why are there so many cases of discrimination? The Disability Discrimination Act (Cth) 1992 hinges on the word 'fairness'. Though the legislation fails to provide practical guidance on what 'fair and reasonable' behaviour is, which essentially leaves decision making in the hands of employers. This is fraught territory as there can enormous variation in how individuals perceive disability. The Law Institute of Victoria have been critical of this stating that 'it seems crucial that some form of guidelines or standards covering all the areas in which discrimination is prohibited under the act be developed'.
Such guidelines would make the act easier to navigate and compare. The Law Institute of Victoria acknowledge that this would be difficult process, which would require 'some care and ingenuity' to develop, though 'every attempt should be made to find means of clarifying the community's obligations under the Act'.
"It has taken me years to realise that no amount of preparation will make disclosure any easier. It is often the most kind-hearted individuals who can be the most challenging to deal with."
There is also a general lack of guidance for how the community should react to access requests. I go to great lengths to avoid disclosing that I am deaf, not because I don't experience communication barriers, I do, rather I fear the reactions it provokes. Disclosure is widely perceived as an invitation for questions about your body, from how it functions and to how it deviates from normal.
Each question leads into the next, as if the person tries to render my disability visible through inquisition. There can be a cruelty to unchecked curiosity. I've been told that I am too young to be deaf or seem too capable. People want to know how deaf I am, how it occurred, why I don't wear hearing aids, as well as how I cope. Or they begin to test my deafness by covering their mouth (to see how I cope not being able to read their lips) or asking me to guess what they are whispering. These are brutal and humiliating situations.
I've rehearsed different ways to disclose, trialling bold proclamations or polite deference, yet no matter how clear I make my access request it is always met with an assault of questions. As disability scholar, Rosemarie Garland Thomson, writes: 'As we manage our bodies in environments not built for them, the social barriers can sometimes be more awkward than the physical ones. Confused responses to racial or gender categories can provoke the question '"What are you?' Whereas disability interrogations are 'What's wrong with you?"'
It has taken me years to realise that no amount of preparation I do will make disclosure any easier. Ironically it is often the most kind-hearted individuals who can be the most challenging to deal with. As social justice advocate, Sisonke Msimang, says 'good intentions can have unintended consequences'. The people who ask the most invasive questions can be motivated by wanting to establish a sense of empathy.
The next time someone discloses that they have a disability, let them decide how much information they want to tell you.
Fiona Murphy is a poet and essayist. Her work has appeared in the Griffith Review, Kill Your Darlings, Overland and The Big Issue, amongst others. In 2017, she was shortlisted for the Dorothy Porter Award for Poets. In 2018, she was awarded an inaugural Writers Victoria Publishability Fellowship and was shortlisted for the Richell Prize.
Main image: Woman nervous at job interview (Pekic/Getty Images)