Featured image: ‘Liz Hall, Two exposures’, Lee Waddell, circa 1986
I wrote the following article as a submission to Black Inc’s upcoming anthology, ‘Growing Up Disabled in Australia’. The editor, Carly Findlay, was only able to choose 40 of the 350 submissions received. That’s an astonishing response, and speaks to just how keen disabled people are to have their voices heard. I look forward to reading the diverse voices chosen for the finished anthology. As mine wasn’t one of the essays chosen, I’ve decided to publish it here. It’s about … wait for it … ‘not being heard’! I wish I could say things have improved in the past few decades but, unfortunately, I can’t.
‘poem for the non-visibly disabled’ and ‘disabled’: an exegesis
by Liz Hall-Downs
I was diagnosed with the autoimmune disease, Rheumatoid Disease, when I was only twenty, and within four years my life had completely imploded. It would take a whole book to describe all the things that happened to me over those four years; suffice to say that the poems I wrote during that period do try to describe what it’s like to be a young person living with the pain and isolation having a chronic illness can bring.
I have been ill for my entire adult life. But this anthology’s title, ‘Growing Up Disabled in Australia’ gave me pause. Because I ‘grew up’ able-bodied – until I wasn’t. So my situation is very different to someone who has lived since birth with a more visible disability. I was already twenty when I was diagnosed, and what I realise now is that I’ve been trying to ‘grow up’ ever since, while navigating a world that seems determined to infantilise me. I’ve experienced life as a well, and as an ill, person, and they really are two very different worlds. ‘Well Me’ was capable, talented, academically bright, ambitious, and planned on doing great things in the world. ‘Disabled Me’ takes life one day at a time, is reliant on strong medications to get through the day, and is often treated by others as valueless and stupid. As I have both good and bad days, both these personas still exist.
This is particularly clear in the way we run the welfare system. The current rollout of the ‘Indue’ card by the Australian Government is just the latest attempt to infantilise welfare recipients, a system in which people on income support are deemed so incapable of managing their own money that the government hires a company to manage it for them, at considerable cost. (And no prizes for guessing who the shareholders in this company might be.) Welfare recipients can now only spend their money at certain places, and being ‘on the card’ identifies them to others at the checkout as welfare recipients, further stigmatising them.
Another example is the ‘sex tax’, in which a disabled person can lose their income support if they embark of a sexual relationship. We don’t get to decide when we’re ready to commit to a relationship. The government decides! If a disabled person lives with and/or has sex with somebody more than three nights a week (at the time I came up against this, the 1990s, this was what I was told), for Centrelink purposes they are considered to be in a ‘domestic partnership’, and the employed partner’s income is assessed when determining the disabled partner’s eligibility for income support. This notion that disabled people don’t need their own money, and that a new partner should be willing to take over financial responsibility for a disabled partner simply because they are having sex is really quite astonishing. I’d like to see a financial breakdown that states clearly how much each fuck is worth.
Honestly, I know married couples who maintain separate bank accounts. The notion that a disabled person has to give up their income in return for what normal people take for granted – a sexual life – is so nineteenth century as to be laughable. And able-bodied people think finding a partner is difficult! Fancy a lifelong financial burden?
And why is this? To the world, ‘disabled’ is a perjorative, a statement of value – or its lack. We are treated as objects of pity, or of inspiration. These seem to be the main two defaults. This is what the late Stella Young was getting at in her viral TED talk, ‘I am not your inspiration, thank you very much’. We don’t want to be praised for simply existing, told we are ‘brave’ for living our lives, or talked down to as a ‘poor thing’ deserving of pity. We simply want the normal things everyone else does – a home, a meaningful job, an intimate partner, hell, even equality! This is why so many activists have now adopted the ‘social model’ when speaking or writing about disability. Because disabled people are not ‘defective’, just different. Society is defective.. Systems that entrench inaccessibility are socially constructed and need to be dismantled. And that’s not just in relation to wheelchair ramps and physical accessibility. It also applies to access to employment, to community, to marriage, to a career path.
In the social model ‘disabled’ is not just a medical diagnosis.
It is a word we reclaim to describe the way the world interacts with us as we move through it.
When I describe myself as a ‘Crip Warrior’ or ‘Invisibly Disabled’ I am outing myself as ‘different’, ‘other’, ‘abnormal’. I am refusing to hide the shameful secret of my less-that-perfect physical body, and, instead, doing the opposite: expressing pride.
A life of chronic illness and pain was not how I expected my life to play out and I was, understandably, a very angry young person. My doctors certainly didn’t offer false hope. Treatments at the time were largely ineffective. But my disease progression was such that I was told I well might need a wheelchair by the age of twenty-six. I was refused opiate drugs for the astonishing pain I was experiencing, as my doctors worried a young person like me might ‘become addicted’. I went home to bed, cried a lot, contemplated suicide, smoked weed to help with the pain, drank more than I should have, and considered which things I knew I wanted to do before my body would be unable to. Mostly involving partying, sex, and travelling around Australia.
In hindsight, this all looks understandable. My previous life was over. I knew it, and so did my doctors. It was the people around me that refused to see it. Worst were family and friends, full of judgement, or disbelief, or accusations of laziness. Or desperate to be helpful and endlessly suggesting diets and snakeoil cures.
But what completely bowled me over was the extent of the discrimination and unfairness I now had to navigate, on a daily basis, along with my painful, debilitating disease. I still have a hard time unravelling it all enough to be able to judge which was worse, the pain and suffering of Rheumatoid Disease, or the change of social status that came with it.
I wrote ‘poem for the non-visibly disabled’ during the first few years of my illness.
POEM FOR THE NON-VISIBLY DISABLED
i don’t work i’m lazy
you ask. i tell you i’m a hypochondriac
details make you uncomfortable i’m a bore
i don’t want to discuss it you were only ‘being nice’
i’m not talkative i’m unsociable
this is the diagnosis i should change my diet
i’d like to be healthy it’s all psychological
i’m not in a wheelchair there’s nothing wrong with me
i can’t come to meetings i’m not interested
i don’t want your advice you’re offended
i can’t get out of bed i’m attention-seeking
they put needles in my arms i’m a junkie
i’m depressed i should have a more positive attitude
i stay at home you never visit
i’d like your friendship i’m too demanding
i’d like to go out i’m no fun
i’d like a relationship you take my independence
i’m not a sexual acrobat i’m selfish
i’m in pain i’m whingeing
i’m disabled you ignore me
who’s the cripple?
Now, years later, what I most notice about this piece by ‘Young Me’ is … the grammar.
That might sound strange, but to my older eyes, it is in the grammar that the real story lies.
I used the lower case ‘i’ in the piece. And that wasn’t because I admired e.e.cummings. (I did, however, rather like the work of the south australian poet jenny boult, who also dispensed with caps. It’s notable that I was writing on a typewriter at the time, which was way before everyone had computers and autocorrect – which made retyping it into this text very difficult. Autocorrect does not like lower case, and I daresay few poets are still writing like this as a result.)
But I deliberately used a lower-case ‘i’ because I felt that my sense of myself and my perceived value in the world had been diminished by my new identity as ‘Disabled’, and I wanted to somehow indicate that in the language.
I felt diminished, partly through the loss of physical function and agency, but even more so by my erasure from ‘normal life’. My very existence in a ‘diseased’ body seemed somehow to break the social contract of people treating each other as equals.
I was no longer equal.
I was now seen as defective.
And people had no problem with continually letting me know.
‘poem for the non-visibly disabled’ is not a poem about disability.
It’s a poem about exclusion. About being forced to explain yourself to people – not just to family members, but also friends, employers, random strangers. In the case of RD, everyone has an anecdote, a story, an Auntie Mary who had ‘terrible arthritis, the poor dear’, and they think they already know all about your condition. And everyone has the desire to ‘help’ – resulting in endless streams of unasked for advice and interrogation over our diets, lifestyles, beliefs, relationships, life choices, karma, financial status … in other words, our ‘relative value’.
This may sound harsh but it speaks of my lived experience. At 20 I had a stellar high school record behind me, had three-quarters completed registered nurse training, and had completed the first year of a Bachelor of Arts in creative writing. And then I got my diagnosis.
It started as a ‘sprained wrist’, but my GP was quick to spot that he was looking at RA and blood tests confirmed the diagnosis. From here, the real pain began. The disease attacked over a dozen small joints in my hands and feet. This is called a ‘flare’. During a flare, the affected joint feels as if it’s been hit with a hammer, as if it is broken or at least severely traumatised. When the severe pain finally eases (which can be fast, or lessening over time, or always there to some degree) parts or all of the affected joints have been destroyed. The deformity seen in the hands of people with severe RA is caused by this inflammation-destruction cycle and is irreversible without surgery. This is the ‘arthritis’ part of the disease. But there’s so much more to it.
Back to the grammar.
The poem slips between first and second person (‘i’ and ‘you’) because some of these words are coming from the speaker (‘me’) and some from other people. Add to this the plethora of divergent voices telling the chronically ill that if they just did X or Y and it all gets a bit confusing. When someone calls you an ‘attention-seeker’, a ‘junkie’, or a ‘lazy hypochondriac’, you obviously take a moment to consider if this may be true. So the use of ‘i’ and ‘i’m’ in the second column reflects this ambivalence. It signifies: ‘Perhaps everyone else’s opinion should be entertained’. ‘I’m sick, so clearly I’m doing something wrong’ is the message received from both within and without the diseased body.
I was interested to interrogate the way I chose ‘you’ in the second column. The majority of the poem is a list of (valid, true) excuses for non participation in ‘normal life’ and a whole truckload of ‘helpful’, or frankly accusatory, blame-filled phrases from others.
When I used ‘i’ in the second column, it reflected my psychological response to these accusations, miracle cures, well-meaning questioning, victim-blaming, and the general erasure of my Self as an independent being deserving of courtesy and dignity.
details make you uncomfortable
you were only ‘being nice’
you never visit
you take my independence
you ignore me
What I’m describing is how people feel quite comfortable overstepping normal social boundaries with those they consider ‘lesser’. To many, the word ‘disabled’ itself is visited with the expectation of kind pity. And that includes asking personal questions, giving unwanted advice, and being offended if their ‘nice gesture’ is rebuffed in any way. This is why the use of ‘you’ is even more interesting when I take just those handful of lines, directed to the other person, and put them together. This is because to the other (ie.the ‘you’ of the poem) they describe a small, probably inconsequential interaction with the ill person. But to the speaker, they represent judgement and rejection. Taken together, the ‘you’ of this piece comes across as a pretty shabby person, devoid of empathy.
The poet Lauren Williams published ‘poem for the non-visibly disabled’ in her small magazine, ‘Big Bang’ in 1984. But its other publications have been hard-fought. Nobody wanted this poem that expressed anger. It was tut-tutted by one of my thesis examiners (anger is, apparently, not an acceptable emotion in poetry). Later, in 2007, I published a book of poems on life with RD, ‘My Arthritic Heart’. But upon the collection’s publication, I’d been convinced to leave the angry poems out. Nobody but me seemed to think they ‘belonged’.
My suspicion is that it was the final line, asking the reader, ‘who’s the cripple?’ that was just too much for my editor, or other readers, to countenance.
What did it mean? That cruel people were ‘crippled’?
Yes it did.
As John Lennon sagely wrote, there IS such a thing as being ‘crippled inside’.
Other people could not handle my rage. The illness was one thing, but the lack of respect drove me nuts. Disabled people are supposed to be nice. Accommodating. Grateful. Accepting of all acts of charity. Not angry and complaining they can’t live on the pension. That they have a lifetime of poverty and exclusion to look forward to.
If I’d known how very little my Bachelor’s and Masters degrees in literature and creative writing would help my employability, I’d have been even angrier. But we push ahead. Try to improve ourselves, stay positive, hope for better. My life is proof. Better isn’t coming.
Worse still, nobody cares. Or, if they appear to, it is usually because they want something.
(And for the young disabled woman, that usually means sex. Until they cotton on to the ‘sex tax’.)
Now to the second poem, ‘disabled’. This piece was written and self-published two years later, and has far more nuance. It’s not just about being diseased and how others treat you, it’s the beginning of my being able to view my experience in a societal context. There’s still rage, but also resignation. ‘disabled’ becomes a descriptor of a particular kind of social experience.
‘Disability, dis-a-bil’iti, n. Want of ability; incompetence; want of legal qualification.
disabled means second-class citizen, living on the pension, telling your friends new ways you’ve discovered to save money.
disabled means training schemes where employers on low budgets use you as cheap labour, work you beyond your physical ability, sack you and dump you on the scrap heap when the subsidy runs out and you’re too worn out to fight back.
it’s old friends who stop inviting you to parties, embarrassed because you don’t look trendy; you dress in op shops and talk about survival instead of ‘catching a man’.
disabled means that look in their eyes when seeing you makes them fear they may somehow be held responsible, may end up with the weight of you on their backs.
disabled is fearing public transport, dealing with walking distances you’re unsure of handling, staying home nights because the car’s likely to break down, and you can’t afford repairs, taxi fares or parking tickets.
disabled means hospitals, clinical assessment of your body and soul by people who pretend you’re not young and full of dreams, who feed you pain killers and advice, who tell you to accept the situation and do what the rich doctor tells you.
it means putting on a cheerful face so the nurses will like you and give you better care.
it means lack of political muscle, discrimination in public places, not being taken seriously, being patronised.
disabled woman means awareness of limited freedom of movement, the quickening heartbeat when men whistle from cars or honk horns, and you know they can see you’d never be able to run fast enough to escape them if they chose to chase.
Eventually, disabled means your eyes become opened to all gross inequalities, and you begin to relate them to yourself, you begin to see it in people you know, you become aware of their personal neuroses and emotional cutoffs
and you start to feel lucky
because you live with human interdependence
and you realise you’re doing better than most
because your heart is still fluid and open to love.
The final line, to me, has always represented my own growing understanding that there are many, many worse things to be than ‘disabled’.
And ‘incapable of love’ is definitely one of them.
Able-bodied people might like to consider all this before even thinking of telling those of us with chronic illnesses and disabilities how to suck eggs. Just sayin’. We live with it. You don’t. So either be willing to listen to what we have to say, or for God’s sake, just shut up.