Not ‘disabled enough’

Taking one look at me you’d think I’m healthy, maybe a little stoned. I trip over myself in public; my vision is blurred, my balance rough. I languish through conversation, often failing to find the words to push it forward. I regularly rub my eyes, and smile a goofy smile. You’d never know there’s a Tolkien-esque battle for supremacy inside my body.

I live with Myalgic Encephalomyelitis (ME), commonly referred to as Chronic Fatigue Syndrome. Far more of a handicap than commonly thought, it is a devastating invisible burden we know very little about. ME is an umbrella term simplifying a host of smaller conditions and symptoms. Coming wave after wave, they adversely affect the body’s systems, severely cutting one’s ability to think, sleep, concentrate, work, exercise, filter toxins and fight infection. I contend every day with not only crushing symptoms, but constant suspicion regarding their legitimacy. Though most full-time work is still near-impossible, I am lucky enough through years of hard work, resource management and resilience to enjoy some aspects of able-bodied life.

Only recently have I begun to identify as disabled, and become aware of my internalised ableism. Only recently did I realise, yes, there IS a strict cap on what my body can achieve each day. Only recently did I grasp, like gender and sexuality, disability exists on a spectrum, and no one end is more valid than the other. My ability to perform daily tasks is heavily restricted by ME, just as others may be limited by paralysis, amputation, learning conditions or other.

Before this, I constantly grappled with my conscience. Does identifying as disabled negate the experiences of others with more explicit struggles? Will I offend them if I do? I also carried a lot of guilt, for dropping into cis-white victimhood and potentially using resources others may need more. I now know comparing myself to others is an exercise in folly. Disability and chronic illness doesn’t care why or how you’re limited, just that you are.

So what ‘qualifies’ someone as disabled, and who decides? Unfortunately, agency does not yet lie with the individual. Australia seems to have developed a prejudice of what disability looks like. Perhaps it’s to do with the wheelchair iconography widely understood to mean ill-health: if you don’t look like that, you’re able-bodied; unable to park in handicapped spaces or ask people for a seat on the train without interrogation.

The government also has its own set of broad criteria. In order to qualify for the Disability Support Pension (DSP) you must: be between 16 years and the age-pension age, have a permanent medical condition stopping you from working (this is usually decided by someone able-bodied, with little or no understanding of disability), meet residency requirements, and meet income and assets tests. I am incredibly lucky to have access to the DSP, a support over 8000 young Australians were kicked off just in the back half of 2015. If you’ve been plugged into local politics through the last few years, you’d know the Coalition governments have regularly demonised disability pensioners, claiming too many are rorting the system. When the public buys into this rhetoric, everyone identifying as disabled – whether they’re on the DSP or not – looks like a crook.

In some cases, extra finance can be the difference between dependence and autonomy. Without the DSP, I couldn’t have afforded to go to uni or live out of home. They were enormous personal milestones at the time, priceless liberties helping me see a life for myself. For others, DSP access might mean an inability to pay for medical appointments and mobility aids, or something else much worse. That an intransigent set of criterion developed by able-bodied Boomers rules a young woman with severe cerebral palsy ‘not disabled enough’ to receive the DSP beggars belief.

It would be foolish to think everyone who applies access for the DSP, or the farcical National Disability Insurance Scheme (NDIS), would be successful. But is a little more flexibility too much to ask?

All living people have their own issues. We need to understand not all are immediately visible, and that valourising certain struggles more than others on a visual basis can have potentially life-altering corollaries. To change attitudes and create a movement of better understanding; however, disabled folk need activist support, because lots of us are unable to engage in much movement on our own. While society has taken decent strides toward better understanding the likes of race and gender (obviously there’s also been big fuck-ups in these areas –BOY, have there been some big fuck-ups) discourse around disability remains sparse.

That a gold medal-winning indigenous Paralympian with only one of four limbs is deprived of disability discounts, and a young woman with arthritis and an autoimmune disorder is routinely abused at her local shopping centre, speaks volumes about how far Australia has to go. That I can’t ask for a seat on public transport without being probed and sworn at, or tell someone I don’t work full-time without being branded a dolebludger, is shameful.

Ideally I’d finish this piece with something uplifting, like ‘Now, I wouldn’t have it any other way!’ But I would have it another way. Every day, disabled folk – especially those not so visible – toil for little recognition. No-one should be treated differently because of bias. Disability and chronic illness, no matter how they manifest, is a marker of strength: a hero of the wars. I wish more people would see that.


Image: Bureaucracy / Yannic Meyer

Evan Young

Evan Young is a writer and multimedia journalist living in Melbourne. He sporadically tweets from @thebevaneffect.

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  1. On the occasion I’ve had to apply for social welfare, staff have always pointed me to the Disability Support Pension and, when I’ve applied for it, I’ve never been refused. (I’m married and my partner usually works — except when his jobs have gone overseas, which has happened a few times — so I have rarely relied on social security.)

    My biggest problem has been due to perceptions that I’m not disabled because my disability is ‘invisible’ to the lay person and ‘anyone can fake an eye test’. (No, you can’t. Photographs of the retina do not lie.) Strangers on the street have verbally abused me for faking my disability because I use a mobility cane and can see a bit.

    In the workplace it can be just as bad and, at times, has been even worse than that.

    However, I was inspired to respond to your article because of the problems with the disability support pension being available only to those with a permanent disability. Some disabilities are temporary. Like the guy who lost his legs: although his legs will never grow back, he was positive that he could do physio, get prosthetics and become competent on his feet once more. Until then, his temporary inability to work in his profession — welding, I think — was real. Placing him temporarily on the disability support pension to aid him and his family to get through the couple of years after his accident would have been sensible and decent. However, because his inability to work was deemed to be impermanent, he was denied that support and instead put on unemployment benefits, with all that entails (job applications, job interviews etc taking time away from physio and unlikely to be successful while he’s still unable to walk).

    The system needs to be scrutinised for fairness and common sense.

    And governments of all stripes need to stop vilifying people with disabilities as frauds and bludgers. Polls have shown that we, alongside refugees, are ‘acceptable’ scapegoats and victims, but research also shows that we are unlikely to rort the system and only a tiny percentage of people on the disability support pension are defrauding the government. And I suspect those people are unlikely to be ‘not disabled’ because of the stringent measures in place; they’re more likely to be caught out with undeclared income.

    Meanwhile, there are a lot of people who need and deserve the Disability Support Pension who aren’t receiving it.

  2. I also think there needs to be a greater recognition that factors outside of the disability criteria can effect the disability – even non medical ones. For instance, someone with a fatigue or pain disability (such as Multiple Sclerosis or Chronic Fatigue) who also has caring responsibilities. Those caring responsibilities are never taken into account, by the decision board – but a mother or father with a young child cannot simply “save their energy” for work, when they have to feed/dress/and sometimes be up half the night with a young child. They still have to get up and get breakfast and pack lunches and get them off to school. Even more so if it is a single parent with a disability. Or, in some instances, a parent with a disability whose child has a disability. All of these things are exhausting, and yet, they are not even considered.

  3. As a disability support worker for the past 15 years I am appalled at the people who decide if you are “disabled”enough.If it wasn’t so serious it would be a bloody joke!!Well it is a joke!!! A man with no legs and 1 arm was told he could type with the other free hand , so he could work 20 hours a week,,Cut off if he didn’t apply for a job…say what???? Are the government paying for his support worker 28 hours a week, then home support with daily needs? Hell no..My daughter is waiting for brain surgery for severe epilepsy..can’t get a job as she is HIGH risk..can’t drive..lost her taxi subsidy..Get a job…We give too much emphasis on bloody Methadone druggies (their choice) and give them department of housing..If methadone would not ultimately kill my child and clients I know..I would suggest that path so they would receive life saving funding…..BUT that IS NOT AN OPTION!!!!!!!! Priorities are no longer there and the new NDIS are going to kill off the burden of “Disabled”….NOT!!!!!!!!!!!!!!! sHAME SHAME SHAME

  4. I too have ME and am terrified of applying for the DSP again. Even though I know I meet the financial criteria also now my partner is earning less, I am so scared at the thought of jumping through those hoops again, of being assessed by a Centrelink-appointed suicidal-looking doctor who will look at me not at all but at his screen as he drones off the questions. I am struggling to fuel myself with the knowing that I deserve this, that I am eligible, because the strident buzz that says I’m not worth it is so strong.

    I’m still stung by rich little Joe Hockey telling me I’m a leaner and the internal voice I’ve inherited from this nasty little society that questions me, saying, maybe you’re just being lazy. Kaybe you should try harder. Like you, it’s taken me a long time to really get my head around pacing with an illness where what you do today you often can’t do tomorrow and the laughing you in a cafe yesterday is the post-exertionally malaised you tomorrow, the one no one sees. It’s all so terribly unfair to be beset on both sides, both internally and externally, by lack of stability.

    This kind of internal unworthiness is what our government is betting on. Their ideology makes an embarrassment of them all.

  5. This situation is also rife for people applying for the age pension. I recently finished teaching at 68, working and paying taxes since I was 15.My husband, who is 70, could not receive the pension as I was working. I stopped work (you have to do this at some stage) and we applied for the pension in May, supplying all the documents asked for. Of course we have accumulated some savings, but in theory should be entitled to at least a part pension and a concession card.
    The excuse used by Centrelink for refusing our pension is that we “did not supply the correct documents”, which is totally untrue. It’s all there. It appears that staff have been instructed to find any loophole to avoid payment of benefits.
    I would guess that the claiming of benefits to which they are entitled becomes just too hard for some people, which is exactly how our government likes it.

    1. I am in the ” not disabled enough” catergory and like yourselves have jumped thru all their hoops only to then have our asset figures duplicated by the department when i applied for a Newstart payment. This resulted in my oartners aged pension being stopped for which they apologised for and then after fixing the mistake, the call taker said she would re submit my application again. Guess what? It hasn’t happened. Off to Mt Gambier centrelink office again tomorrow. Not listening to 4 hours of the most irritating (intentional?) Violin music on hold again.

  6. Great article, Evan. Invisible/semi-visible illness and it’s consequences requires illumination. When I go out, I use my walker for multiple reasons – to prevent falls, to ensure I have a seat accessible to me, and to signal to others that I am easily injured, that I usually need someone to open a door for me, and more. I use my walking aid to identify myself as disabled. That’s a whole other story.

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