I said this to Leanne more than 30 years ago; I meant it then and I mean it now.
Leanne asked me to write an article for her, providing some insights and perspectives from a carers point of view, so here it is, with the facts, the feelings; the dark and the light.
Plenty of us have said these words, and I bet few of us really thought about what they meant. Few of us really could.
And, plenty who have had to confront the realities behind these promises simply decide that they really didn’t mean it at all, or that they couldn’t actually live to the promises.
Caring or partnering?
I’m not judging them necessarily, just saying that it is so. Because when a disability happens, everything changes – almost. What doesn’t and shouldn’t anyway, if you are really the partnership you wanted to be, is how you see one another. I’m talking here in the context of our personal experience, where the disability is physical only and our ability to communicate is not impaired.
I have the great privilege of serving on the Board of Carers Australia (www.carersaustralia.com.au ). When I interviewed for the role, one of the panel asked me why I didn’t identify as a carer ( I was – often still do – referring to myself as Leanne’s supporter, or helper – not as her carer). I answered that I wasn’t avoiding it; I just didn’t think in those terms. I do now, consciously, because it is also a privilege to be able to provide necessary care for people who need it – especially when that person is the one you love the most. Certainly, no vows prepare you for giving or receiving support in so many aspects of life – from simple things like cutting up food, turning over in bed or scratching an itch (stuff that able bodied people don’t even think about – these things are simply unconscious actions) to assisting very personal functions. More on that later.
We have brilliant friends, who have a varied level of real understanding about what all of this means. Some who are very honest about their self-perception about how well they think they would cope with our situation; some who may not consider it. Of course, we don’t share all of the problems or all of the pressures…it is hard to do so without sounding like a whinger, and no one needs to know the full spectrum of our challenges and our difficulties. And all of our friends make sure that our condition doesn’t impair our inclusion.
Disability is a thief
It takes what it can from as many people as it can, and it is voracious. Disability takes capacity and opportunity away from those who have it; it takes independent lives, educational choices and careers away from those who care for others. It takes away financial security – big time – by using up money and preventing you earning more. And it takes away choice. It makes everything hard. It can crush optimism and hope – and not just for those with the disability. It steals direction, purpose and ambition. It certainly tries to anyway, and it take a lot of fight to keep it at bay.
And it has plenty of accomplices, including the government, urban planners, builders, employers, financial institutions…and quite possibly you if you have ever behaved in an ablest way (I bet you have.) Check this out if you want to understand…https://www.abc.net.au/news/2019-04-13/ableism-makes-having-a-disability-even-more-difficult/10993662.
Things are hard for carers
Workforce participation is just over 40%, compared to non-carers at 70%; gross weekly income is 42% lower for carers, and over 42% of carers rely on government pension or allowance for their income, compared to just over 11% for non-carers. It’s hard for young carers too – apart from the emotional duress of caring for (often) parents or siblings with significant disabilities, only 32% of this cohort are likely to complete Year 12, compared to 72% of non-carers. And, over 30% of us spend more than 40 hours every week providing that care – 40 fragmented, disrupted, around the clock on demand hours. It’s hard.
So – where is the light?
Let me start by saying that disability should not define a person, any more than race, gender, sexual orientation or any other unchosen aspect of your being. Unfortunately there are many people in our society who have neither the depth of intellect or character to see beyond these traits, but those people live with a profound disability of their own. It’s sometimes called stupidity, sometimes ignorance – regardless, we are talking about people with sluggish and unencumbered minds that are totally unburdened by knowledge, thought or fact. If I haven’t made my feelings clear here, I apologise.
Importantly, disability should not define a person’s perspective of themselves. Certainly, to Leanne and I, disability has wrought significant physical change, but no relational or attitudinal ones. She is still the person that I fell in love with and convinced (against all odds) to marry me. We are still the same team; the same partnership. And we are equal in every way that counts (she just sits down a lot more than me).
Many carers – myself included – identify many aspects of being a carer that are very rewarding. Leanne has made me the person that I am – a much nicer and more rounded person than I would have been without her (imagine that). I admire everything about her, and we get to spend a lot more time together this way than we would otherwise! And, while we thought we were a great team before, we are an unbeatable one now. Because, when you’re forced through a fire, two things can happen. You can burn up, or you can become forged in a strength that you could not have imagined possible. And, like a Japanese katana, the more intensely you are forged, the stronger your steel becomes. We are well forged indeed, and there is no doubt at all that we will be through the fire again…
So there you go. I will leave you with this thought; one that I have expressed often to Leanne and one that is shared by many carers. Simply, that I would rather be with her as we are than with anyone else under any other circumstances. For better, that’s for sure.
 All data in this paragraph is from the “Australia’s Welfare 2017” report, Australian Government; Australian Institute of Health and Welfare