‘poem for the non-visibly disabled’ and ‘disabled’: an exegesis

(This is a rewritten, expanded version of an earlier post. Submitted to two outlets without success, so now sharing it here. Liz HD, 16/7/22)

On social media recently, a friend shared an image from a mainstream media magazine. The cover story was about the increasing prevalence of autoimmune diseases. My friend remarked on the model’s youth and nudity, and complained about such an image being used to represent ‘old people diseases’, labelling it gratuitous and sexist. I told them they were wrong, that these are not conditions of ‘old age’, and that forty years ago I would have cheered loudly to have seen such a story presented in this way.

I have Rheumatoid Arthritis (which I prefer to call Rheumatoid Disease, as it is much more than just arthritis) which was diagnosed when I was just twenty years old. RD affects women 3 times more often than men, and usually first manifests in the childbearing years … though there is also a childhood version (Juvenile RD) that has been known to affect babies and toddlers.
The other diseases mentioned were Type 1 diabetes, which people are usually born with, Long Covid, which affects people of any age, Inflammatory Bowel disease, which also affects all ages, and Fibromyalgia/Myalgic Encephalitis. There is also such a thing as ‘early onset Alzheimer’s Disease’. So, to me, these conditions being illustrated with a photo of a beautiful young woman seemed totally appropriate. I told my friend that I wished people understood that young people are frequently disabled by these ‘invisible illnesses’, because if more people understood this, our lives would be a whole lot easier.

For me, one of the hardest things about having a chronic autoimmune illness as a young person was that hardly anybody believed there was anything wrong with me. Meanwhile, I was in horrendous pain, and I lost movement and functionality in half of the joints in my hands and feet just in the first few years. Treatments weren’t as effective then as they are now, and I was told I’d be using a wheelchair by the time I was twenty-six. Hospital social workers scolded me and told me to ‘stop trying to live a normal life’, Specialist Rheumatologists told me to take the drugs and go home and watch TV for the rest of my life, and the welfare system, thankfully, gave me a Disability Pension. To everyone who was aware of my illness, my life was over. Facing lifelong disability and chronic pain pretty much alone, having people accuse me of laziness, or making things up, saying I ‘looked fine to them’, was very hard. Talk about Gaslighting on steroids! I wouldn’t wish this on anyone. Of course, if I DID tell people about it, and they believed in its reality, I became ‘that poor girl with the terrible disease’, an object of pity … I just couldn’t win. I won’t even go into all the unwanted, unasked-for, and often stupid ‘advice’ I’ve been subjected to for a lifetime by untrained peddlers of woo with bugger all medical, or even basic anatomical, knowledge. I am sick, they are well, so clearly this was a result of something I was or was not doing.

Using my Disabled Parking Permit was fraught. People stared at me as I got out of my car and quite obviously, and sometimes, aggressively, doubted my honesty. Never mind that these permits are never given out willy-nilly without solid medical evidence; never mind that, although I looked alright to them, I was in excruciating pain and would return to my car hobbling after a turn around the supermarket aisles. No, those judgemental strangers in the supermarket car park firmly believed they knew more about my health than my doctors did, and that, furthermore, everyone knows those parking spaces are only for wheelchair users.This lack of understanding about autoimmune, systemic, and ‘invisible’ illnesses became a very heavy cross to bear, and I have borne it for my entire adult life.
Four years after the diagnosis 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 was like to be a young person living with the pain and isolation having this type of condition can bring.

I ‘grew up’ able-bodied’ – until I wasn’t. So my situation was very different to someone who has lived since birth with a more visible disability, or had acquired disability due to accident or misadventure. I’ve been trying to ‘grow up’ ever since the disease first manifested, 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 exist concurrently.

This is particularly clear in the way we run the welfare system. The ‘Indue’ card that was touted by Twiggy Forest and the (thankfully now defunct) Australian Government, at the cost of over $10,000 per person, was just the latest attempt to infantilise welfare recipients and profit from their suffering. The card represented a system in which people on income support are deemed so incapable of managing their own money that the government and a purpose-built private company has to manage it for them, at considerable cost. (There are no prizes for guessing who the shareholders in this company might be.) Welfare recipients on the card could only spend their money at certain places, and being ‘on the card’ identified them at the checkout as welfare recipients, further stigmatising them in their communities.

Another example of this infantilisation is what we Crip Warriors call ‘the sex tax’, in which a disabled person can lose their income support if they embark on a sexual relationship. We don’t get to decide when we’re ready to commit to a relationship. The government decides for us. 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 welfare 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 automatically be willing to take over financial responsibility for a disabled partner simply because they are having sex is really quite astonishing. I’d really like to see a financial breakdown that states clearly how much each fuck is worth.

I have known married couples in this situation who have ostensibly broken up and maintain separate addresses and bank accounts. The notion that a disabled person has to give up their income in return for what normal people take for granted – a normal, adult sexual life – is so nineteenth century as to be laughable. And able-bodied people think finding a life partner is difficult! Does anyone fancy taking on a lifelong financial burden when you’ve only just started dating and are just getting to know one another?

Why is this? I believe that, to the world, ‘disabled’ is a perjorative, a statement of value – or its lack. We are treated either 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’. People with disabilities don’t want to be praised for simply existing, we don’t want to be 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 an income and equal opportunity! 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. In the social model, it is society itself that 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, to a full life in which one is treated as an adult, with the focus on our abilities rather than a patronising sympathy for our disabilities.

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-than-perfect physical body, and am, instead, choosing to do the opposite: expressing pride.

A lifetime 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 (the 1980s) were largely ineffective, and my disease progression was such that I was told I would 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, and drank more than I should have. I considered which things I wanted to experience before my body deteriorated even further; these mostly involved partying, sex, and travelling around Australia in a hippy van. I was terrified at the prospect of ending up in an aged care facility before I was even thirty.

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. Worse still were those desperate to be helpful, certain they could ‘fix’ me, endlessly suggesting diets, therapies and snake oil cures. Everyone has an ‘arthritis cure’, even though they don’t know anything about the differences between the over seventy type of ‘arthritis’ that exist. ‘Arthritis’ is a symptom, not a diagnosis, and occurs in many disease processes. Rheumatoid Disease isn’t just a few sore joints like osteoarthritis is. It is systemic autoimmune inflammation and it attacks the organs, the connective tissue, the temperature regulation, and, yes, the joints of the body.

But what completely bowled me over as a young person 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 the following performance piece, ‘poem for the non-visibly disabled’, in the first few years of my new reality.

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 in her work. 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 very 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.

POEM FOR THE NON-VISIBLY DISABLED is a poem about exclusion. It is about being forced to explain yourself to people – not just to family members, but also friends, employers, and so very many rude and random strangers. In the case of my admitting to having Rheumatoid Disease, 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 how to ‘fix’ it. They have a desire to ‘help’ – resulting in endless streams of unasked-for advice and relentless interrogation over our diets, lifestyles, beliefs, relationships, life choices, karma, financial status … in other words, our ‘relative value’. It makes socialising very, very difficult as you become a diagnosis to them instead of a person.

This may sound harsh but it speaks to my lived experience. At twenty 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 my right wrist swelled up.

I had thought I had a sprained, or even broken, wrist, but my GP was quick to spot that he was looking at RD and subsequent blood tests confirmed the diagnosis. From there, the real pain began. The disease attacked the 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 RD is caused by this inflammation-destruction cycle and is irreversible without surgery. This is the ‘arthritis’ part of the disease.

But 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.

Several decades later, I became interested in interrogating the way I had unconsciously chosen ‘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.

you ask.
details make you uncomfortable
you were only ‘being nice’
you’re offended
you never visit
you take my independence
you ignore me

What I was describing was how people seem to feel quite comfortable overstepping normal social boundaries with those they consider ‘less than’. To many, the word ‘disabled’ itself carries the notion of sympathy and 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 for. Nobody wanted this poem that expressed anger. It was tut-tutted years later by one of my thesis examiners (anger is, apparently, not an acceptable emotion in poetry). Later, in 2007, I published a collection of poems on life with RD, ‘My Arthritic Heart’. But I’d been leaned upon by an editor 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 so sagely observed, 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. Accomodating. Grateful. Accepting of all acts of charity. Not angry and complaining they can’t live on the pension. Not raging because they know they have a lifetime of poverty and exclusion to look forward to. Not demanding society to help them get a goddamned job.

If I’d known how very little my subsequent Bachelor’s and Master’s degrees in literature and creative writing would help my employability, I’d have been even angrier. But we push ahead. We try to improve ourselves, stay positive, hope for better days. But my own 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 treated me, 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.

‘disabled’
‘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 most definitely one of them.

Luckily, for me, in my early thirties I met a fine man who’d lived through his own struggles with ill health – a cancerous melanoma and major surgery in his early twenties. He knew the score. And so he saw the person in me, not just the condition. It is true that there are three entities in our relationship: him, me, and a pain in the bum we refer to as ‘Arthur’. Thirty years on, we are still together, and I am grateful. But I am also other things. I am capable. I am equal. I am clever. I am a person, not a diagnosis. And this realisation and way of relating has been his greatest gift to me. I actually consider myself luckier than most. Disability doesn’t faze me, and death doesn’t scare me. In the end, regardless of the state of our physical bodies, it is love, and only love, that makes for a meaningful life.

(3,895 words)