Deciding to disclose an invisible disability

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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.

Woman nervous at job interviewConcealing 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 MurphyFiona 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)

Topic tags: Fiona Murphy, Deafness, disability, invisible disability

 

 

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Existing comments

One of my granddaughters is disabled with cerebral palsy. Which is immediately noticeable. The vast majority of people are kind and sensitive to the situation. When my daughter and I have been out and about with our youngster some of the comments have been invasive and unthinking: "What happened to her?", "She's so pretty, such a shame", and "Poor little thing". I have trouble hearing when there is loud background noise or when someone whispers. I choose not to talk about this and my good friends invariably help, not humiliate.
Pam | 27 November 2018


Having a physical disability - and being otherwise fine - is a real problem in our society. I have known quite a few people who are wheelchair bound, due to accident or genetics and who are extremely intelligent being treated as if they were mental defectives. OK, treating anyone with a disability of any sort badly is not good. The problem is how do you educate the average person to treat them appropriately? I think you need very simple Sesame Streetish advertisements on national TV and a grass roots approach to it in schools. Disabled people also often need appropriate workplace support. This costs money but that would only be a fraction of the cost of conciliation or legal remedies. I always regard education as the first resort and the Law as the last, but often necessary, one. Come to think of it, seeing so many people watch the soaps, what about a deaf or disabled real character in a series like 'Home and Away'? This article is one of the best pieces of disability advocacy I've seen in a long time.
Edward Fido | 27 November 2018


Thanks Fiona and well said. Deafness is one of many invisible disabilities. Other neurological problems e.g. MS, chronic pain, and particularly mental health illness fall into the category. Sadly, government policy is to make access to disability support as tortuous, inequitable, and difficult as possible, thrusting many truly disabled persons into the penury and futile processes of Newstart.
Llew Davies | 28 November 2018


I have a disability affecting mobility and dexterity. After 40 years I still assess every interaction as to whether its safe to disclose what is not always visible. My worst responses have been from other mothers, judging and over reacting. The fear of someone saying "you're not good enough to be here" is based in my reality. And the women's movement has no place for us. Thank you Fiona for sharing your story.
Daisy | 28 November 2018


Thank you, Fiona, for an outstanding article. The question of what to disclose and what terms is an abiding one. My disability is visible and so I tend to face the questions on first contact. Like you, I tend to assume that the questioner is motivated by a desire for empathy. As a result, I tend to err on the side of over-disclosure but agree completely that what to disclose and how is for the person with a disability to decide on their own terms. The fundamental challenge, of course, is to inform people that there is absolutely nothing "wrong with" us at all. Disabilities are simply one manifestation of the limitness which is the lot of humanity as a whole. Thank you again for this much needed discussion of an important feature of what it means to be a person.
Justin Glyn SJ | 28 November 2018


I’ve been losing my hearing over forty years. These days, close to 70, I have to use powerful hearing aids or live in silence. ?When I was socially and politically active I’d tell others that I was hearing impaired, and invite them to help me by speaking clearly, not covering their faces, not turning on background music noise. Most were well intentioned, but they soon forgot my invisible disability. I wondered whether I should carry a hearing horn as a visible reminder. But this was amidst friends. Later I wondered whether I should wear a T-shirt or badge that announced my disability but I decided against it when I realised that a significant number of people thought hearing loss funny, and made me a target for frightening with unexpected noise/shocks. Also, in mainstream culture, deaf=dumb, seems entrenched. In recent years, participating in a small discussion group, I used a hand-held/table mike linked wirelessly to my hearing aids. I put the mike on a central table, and once again was reminded that others “forget”. All too often I received a percussive earful when someone banged down a coffee cup or rattled a writing instrument. I’ve withdrawn from society, turned off/removed my hearing aids, and life is much more peaceful. I'm well aware that younger people, seeking employment have to deal everyday with this perennial problem - people forgetting, or finding an invisible disability "funny."
Carol Rose | 28 November 2018


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