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
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