Introduction
I was discussing a mutual acquaintance with a former colleague. This person had acquired a significant disability. Their person style was abrasive. I wondered whether the trauma of the acquired disability was influencing their personal style.
I recalled my 10 months in hospital. I was paralysed for 3 months, and the remaining 7 months were a grimly determined struggle to recover control over my body. I ended up with life altering residual disability in my ankles and wrists and hands.
There was no psychological support offered. The focus of attention was on the body, not mind or emotions.
I was 18 months off work, and I came back in not a good head space, or heart space. I was determined to recover my ability to work effectively. That was seen as heroic. But it wasn’t. It was survival, and I was freaked out. I know that now. I didn’t know at the time.
We are not heroes
A few years ago, I was getting my crutches out of the car when a guy walked briskly by and called out, “You are my hero!” He was gone before I could react and respond. I would not have been civil.
Quite a few people confessed that they couldn’t have done what I had. To them I said they were selling themselves short.
I am not suggesting that genuine heroes do not acquire catastrophic disabilities – only that the measure of being a hero is not the disability, or how it is handled.
If anything, people who have catastrophic experiences which leave them with a disability are way-showers to those who have had no discernible trauma in their lives – you too can do this. We are resilient, but we also suffer.
Permission to grieve?
In the spectrum of what can happen I am comparatively lucky. I did not injure my spine. I still have all my limbs – but even so a guy I know with two below knee amputations walks better than I can.
Still, I haven’t felt there was permission to grieve granted to me by those who cared for me – and I scarcely allowed that for myself for a decade.
Grief is about letting go, not feeling sorry for oneself. It is about acknowledging and owning what has happened, not suppressing, or denying it. I lost the ability to garden, go bushwalking, perform home maintenance tasks and a bunch of other things that were integral parts of my normal. I am reminded constantly of that loss, not because I dwell on it, but because the garden still needs tending, as does the house.
But grieving is not just a one-off thing. It can last a lifetime. A friend who lost his son to bone cancer when he was just 17 remembers his death with his daughter each year. And when an experience re-defines you as different from those you were once like the reminders can be constant.
One of my former colleagues became suddenly deaf after being given medication for a condition that had nothing to do with his ears. I spent quite a few hours on the phone with him once he acquired hearing aids that allowed him to use a phone. He was traumatized by his sudden loss of hearing. Nobody had spoken to him about the sudden loss or let him speak about his experience. In 2019 he spoke at a seminar on disability awareness held for regional staff members. He talked about what felt like to become deaf, and the struggle of adjusting.
I saw him change – from being angry to being an advocate. He was angry because he had become deaf. He was frustrated nobody he worked with understood that. Rather than giving empathy they were remote. They didn’t understand – how could they. He didn’t understand but was expected to do so. He was expected to be ‘heroic’, but that was a role imposed – as it always is. And we assume heroes don’t grieve, they ‘suck it up’.
Courage and determination aren’t exceptional
I constantly remind myself of Claire Cunningham’s observation that disability is just part of the spectrum of being human. People quietly experience and endure shocking and painful experiences – and we adapt mostly – though in ways that are not always ideal.
When I was in hospital, I became alarmed that my welfare was at risk, and I became angry and militant. I look back with no apology. My energy was directed only at the people who put me at risk. They had assumed I was to be consigned to a nursing home. I had a differing opinion.
These days we understand trauma much better that 14 years ago. But popular perception has not caught up. Trauma informs so many lives, but only a few are pressured to be heroic.
Exclusion also causes trauma
Apart from the impact disability can have on one’s personal identity – the personal sense of no longer being who one was – the exclusion from being like other people is deeply painful at first – then it becomes an ache that does not go away.
It takes time to adapt. We are neurologically programmed to favour those who are like us, so becoming unlike those we were once like triggers a sense of removal. This is true even when our in-group remains apparently accepting and embracing – subtle act of isolation can still apply.
This isn’t a moral matter, but a biological one. The obvious area where this is most telling is in intimate relationships – and this can impact social relationships as well.
We humans are social beings. Our sense of identity depends on how we interact with our community and in-groups. Subtle acts of exclusion can sting deeply and wound. A gross act of exclusion can be seen as transgressive to a group, but the subtle is part of the normal.
This touches on the more complex area of identity and intersectionality. I want here to affirm that trauma can be a personal experience because of a catastrophic experience, and then a social one as the aftermath of that personal experience plays out in one’s life – in relating to others.
The tyranny of the able ideal
It’s not like there haven’t been people with disabilities until recently. Men, in particular, have routinely lost limbs in wars or accidents. And yet designing the world inhabited by humans, something we have been doing for millennia, has only recently become sensitive to the diversity of human conditions.
It’s as though we have become hypnotized by a vision of a human ideal – a mythic average person who has no impairments to senses or body or psyche. It is from this perspective that a person with disability is so often viewed – even by people who are nowhere near that ideal average human.
The upshot is that people with significant disabilities are seen as non-conforming to that ideal – and are heroic in our efforts to live in that idealized world. It’s like what has changed in the minds of those who commission and design the built world has been the revisioning of people with disability as heroes who should be catered to, rather than seeing them as people who express part of the spectrum of being human – people they have duty to serve, to embrace as one of them.
There is a profound difference between making the built world accessible to people with disability and making it available to the spectrum of human expression – in relation to which a person with disability is only a reference point of lived experience, not the primary or sole beneficiary.
Two struggles
The social model of disability is useful in that it draws attention to the way the idealized world is not compatible with the spectrum being human – of which disability is but a part.
But it also creates a distortion – the impact of disability is external – out there in the idealized social world. It is also internal. Behind the imposed heroic masks there is also trauma, unresolved grief, and physical pain.
This reality was brought home to me when a former colleague spoke of his process of getting out of bed, showering, and dressing. He has prosthetics on one arm and one leg. He also spoke of the constant physical pain. The conversation was triggered by my question about why he thought he was being bullied by his manager and the next up manager. He was explaining that just getting to work was sometimes such a struggle he felt flat and dispirited. Anticipating the bullying did not help. Rather than trigger in-group concern, he triggered exclusion, not only because of his obvious disabilities but his mood and manner. He was not ‘one of them’. He was not ‘abled’ like them, and he was not a member of the management in-group. He was an easy target for exclusion.
In my fortunate circumstance I rarely experience pain related to my disability. Everything I do must be conscious and deliberate. I cannot lose attention when I am walking. I cannot lose attention when I am holding or manipulating anything. If I fail to remain attentive, I will fall or drop things. My walking speed is at snail’s pace. I am kept upright by two Canadian crutches. Before my disability was acquired, I was a walker. I loved walking. I grew up in the Tasmanian wilderness.
Navigating a world not designed to accommodate the range of abilities present across all members of our community is a varied experience. Sometimes there is no barrier. Sometimes there is, and it is absolute and exclusionary.
Navigating the inner world is likewise a varied experience. There may be trauma that has not been resolved. There may be grief caused by the loss of senses or physical utility that is unexpressed. In this people with disability are no different from all other people whose lives have been rocked by trauma, loss, pain, or stress. It is that we often have inescapable signs. You can’t miss crutches, wheelchairs, guide dogs, or white canes.
The tenacity of the human spirit
To admire a person with disability as somebody special, or heroic, because they are seen to be out having a go devalues the human spirit. It also devalues the idea of the hero.
According to the Oxford Dictionary a hero is “a person who is admired for their courage, outstanding achievements, or noble qualities” I’d add that this [in my view] pertains in relation to service or an ideal, not about a personal matter. the word ‘hero’ is loosely applied these days. I prefer that it is reserved for those who risk their lives or wellbeing in response to a sense of duty, and in the service of others.
When I was in the rehab ward, I met a guy who had had a stroke. It was his 2nd. He told me how he had spent 2 years learning to climb the stairs to his bedroom after the first. He had made it, and then the 2nd one hit him. He said, with a sigh, that he would have to start all over again. But his wife interrupted and said they’d move into a single-story home.
If you haven’t been clobbered by something catastrophic you will maybe not appreciate how resilient the human spirit is. That’s our normal as humans. We are resilient. Heroes put themselves in harm’s way. Some may, as a result, have to struggle to recover as best they can from the harm inflicted upon them in the performance of their service.
Conclusion
There is nothing exceptional about striving to recover what one can from a catastrophic event. If anything, those who do strive are exemplars to remind others just how resilient we all can be – not outliers doing something remarkable.
The guy who said. “You are my hero” could said, “Thank you for reminding me how resilient I can be”.
Seeing us as heroic can hurt us. In the whole of my recovery, which was 18 months [10 of which were in hospital] before I got back to work, not a single person asked how I was coping emotionally. From the time I was suddenly lying on the loungeroom floor unable to move I felt nothing – no fear, no anxiety. Was it shock? Was it a protective reaction that shut down strong emotions at a time they were not useful?
Later, after discharge, I wrote a lot. This is from 21 August 2009: I could do no other thing than I have done. It is not remarkable to be oneself, to be other than in character. For this reason, I have long detested the notion of the “hero”. Courage and bravery are not extraordinary or remarkable. They are commonplace. People of character and integrity always stand up when circumstances demand it.
I think I wrote a lot of my grief out after my discharge in February 2009. But there is still something that may never leave me. When I see people walking freely there is a twinge of loss – I used to do that. I am okay with that. It reminds me of what is important.