Proximity, Presence and Persistence: International Day of People with Disability

December 04, 2016

As another International Day of People with Disability draws to a much overdue close, I am actually feeling something like strength emanating from my sufficient and terribly adequate] bones. I dislike what the symbolism of yesterday tends to invoke in communities though. There's the social roles that disabled people fulfil being paraded in a feel-good and tokenistic way, and then the fully able bodied people who talk about us and for us, but never really to us, it is excruciatingly pitiful. The most common and palatable message is that we can "overcome" our bodies to express some sort of collective humanity, so we are actually worthwhile beings, thus we should be included in society.

Sorry, I know I'm writing from a very privileged social context, meaning I live in a country that has a sense of social welfare, and I am doing so from a slightly idealistic consciousness, but I innately call BULLSHIT. Not because I don't get the challenges, dedication and perseverance it takes to create accessible spaces and support people with varying needs, but because I understand that those people are essential to all communities in all sorts of ordinary and weird ways, and that any effort to portray that to our prejudiced, broader society falls short. Also, there's no typical expression of humanity and there’s no overcoming our bodies, or our minds, or our hearts, we just have to work with whatever we have.

This theme kept coming up throughout my day, perhaps not more than usual, but I may have been more aware of it. Phoebe and I struggle to be on time, anywhere we go, I struggle with not wanting to be too early, then start doing, or watching something that takes a bit too long, so I end up being late. This morning it was my ongoing bingewatch of Gilmore Girls, I was meeting Phebe for brunch, and when I eventually got out the door, I realised that I had left my Opal card in my other bag, so had to go back. I tried to just breathe and let go of the elusive concept of being on time, I smiled and texted Phoebe. When we met up, only 10 minutes late (yes!), we went to a place, shared a salmon thing, and talked about our lives, loves and what we have read since we last saw each other. I spoke about how I find my memory for any particulars and my intellect in general so frustrating, because I know she’d never go, “Ahh, but you do so well, you far exceed most people’s expectations of your capabilities”. She empathised, saying that she frequently has the same thought, but that we both know we know stuff regardless.

Then when we were heading off to find our different bus stops, I saw a person from my somewhat recent past, who happen to remind me of something that happened years ago and I started to cry. The something was neither terrible or deliberate, and I have lived with it long enough for it not to cause the soul-crashing pain it once did. But there it was, and there I was again, so small and feeling caught off guard by my stupid heart, by my silly life. Luckily, by chance, Phoebe was still with me, she could foresee my emotional reaction, held my shoulder tight and just walked with me, and then we hugged good bye, she hugged me twice more. I was exhausted. My friend, Robin had been hospitalised overnight, I was thinking about visiting them, but felt too drained and too centred on my self to do so. I was writing the apology in my head as to why I couldn’t be there, when I saw on Facebook that they were without their glasses and for some reason, the fact that they were not seeing as well as they could, on top of everything else saddened me enough to change my plans. This was despite the fact that Robin’s body has a death wish, it causes them so many problems with daily existence and that they nearly died during the night, as they do weekly. I haven’t processed that at all, it’s hard to think of someone so present, so huggably tangible and so young with strong opinions on so many things – someone who I have only started to get to know, as so unexpectedly fragile and mortal. And so, I count my own spoons, think of my own priorities and don’t think of, or even sit with what Robin is going through or how they could possibly die tomorrow, and that their family is in Switzerland, pretending the situation isn’t too critical.

I went and collected my Lightwriter from home that I had forgotten in my morning rush, then I went and got their glasses and found my way across the city to find Robin. They were laying uneasily in a bed, in a cubicle on a weekend-desolate ward for spinal injury. They were just awaking from the haze from having your vertebrate that is just below your brainstem slip way out of place so you can’t speak or even move voluntarily for indefinite periods of time. I don’t know how to be in most situations, I laughed as I fumbled with putting their glasses on their face (again, I am not adequate help with most things, in most scenarios), I felt the need to hold their hand, to make up for my awkwardness. Then a doctor in scrubs (a registrar who works with Robin’s neurosurgeon) came up with a timid sidekick, he said that Robin’s scans look reasonably benign, ( but in order to get the MRI done, Robin needs to be somewhat stable and not in too much pain, ie nothing major is out of place in their body at that moment) I could feel myself getting annoyed that they weren’t taking the erratic nature of Robin’s bones into account. This doctor said there wouldn’t be any decisions made until Monday, so he gave them the option of going home and then waiting for the news, or being in and having nurses around.

The doctor went away, and then Robin and I weighed up the pros and cons, then they said that they really wanted to go home. I completely understood the instinct to be in their own space, with familiar pillows, people and pets. So, I tried to help them pack up, expecting it to be an hour for us to sign the paperwork. I ended up sitting in Robin’s wheelchair while a timid nurse took the cannula out of their arm, that was a weird moment, because it almost felt socially expected, like Robin looks more able in many respects than I do. We were out of there in half an hour, but I felt so useless in that situation, because I couldn’t perform the role of being the healthy, capable friend (even though that exactly was what I was), who could reassure the medical staff Robin was in safe hands. Since Robin brought half a dozen pillows into the hospital with them to be somewhat comfortable, we had a fun time carrying that all down, we must have looked hilariously un-co, these two tattooed disableds with brightly coloured hair, trying to do a thing of living without an able-bod.

We ordered an uber, but Robin was exhausted, and of course our driver asked them about our route, although I was in the front and was the ‘official’ passenger, which I was more annoyed by than I usually would have been. We got home, ordered maccas and all I felt I could do was to hold Robin and be present for that minute with them. I couldn't help but want to remind myself of their physical presence, to comfort my own fear, sense of uncertainty and love for this fellow tiny human. During the night, a few of Robin’s friends came over and we just were in close proximity, joked and talked for hours, about nonsense, disability and life. IDPWD 2016 wasn’t particularly notable, we just worked with whatever we had, in order to continue to make it work for us for as long as possible, and tomorrow we'll do the same.