Coming out as disabled

First published in Archer Magazine.

It’s 8am and I’m about to head into a work briefing with a bunch of new colleagues. Stacked chairs line the side of the auditorium; apparently, we’re supposed to put them out in rows.

It’s just me and a couple of older women so far. They immediately get to work as others filter into the space. I look around awkwardly; I don’t want to be the guy who doesn’t help.

I should help because it’s my first day and I want to make a good impression. And because, try as I might to dissociate from anachronistic gender norms, we still live in a society of ladies and gentlemen. I’m supposed to be the latter, which means eagerly volunteering myself for physical labour.

I brace my stomach and slowly pick up a chair.

“Should you be doing that?”

The question sails sternly across the room and I turn to see the only other person I know, an ally who’s aware of my precarious physical state and how it came about. She smiles, and I ride out the remaining minutes of seating placement pretending we’re having a really important conversation.

She’s right, of course: I shouldn’t be carrying chairs because I have a serious spinal injury. And by injury, I mean impairment. By which I actually mean disability. I’m still coming to terms with it, to be honest. Nonetheless, I don’t want to hurt myself.

There was always a certain permanence underpinning disability when I thought about it in the past. I assumed that disability was a static phenomenon: a person was either disabled or they weren’t. And, if they were, they likely knew exactly what they needed and could communicate those needs to the people around them, having done it a million times before.

I knew some people acquired their disability later in life, rather than being born with it. But I never considered what that transition might have been like. What it means to navigate the gradual onset of a condition or one that manifests episodically. That was, until disability began to creep into my own life.

It started in 2017, when a surgeon aiming to resect a herniated intervertebral disc in my lumbar spine accidentally operated on a healthy disc instead. After a few months of heightened pain, panic and uncertainty, we finally figured out what had happened and corrective surgery was attempted. But the damage had been done, and my condition unravelled.

I experienced progressive disc degeneration and decreased mobility, punctuated by episodes of debilitating pain. Then a couple of years ago, a wayward piece of disc compressed a spinal nerve for so long I lost some of the movement and sensation in parts of my foot and leg. Permanently.

Limping around home that winter was when my disability identity finally began to settle. Things were never going to be the same after that exacerbation. A bit of hope faded away as my foot drop set in.

Broadly speaking, my situation isn’t all that uncommon. The most recent data from the ABS reports around 550,000 Australians live with a disability related to back problems. Mine is a bit of a strange case though, what with the botched surgery and my being quite young. (I like to mention that last bit as I approach my 40th birthday. Most other people who experience disabling back pain are over 65 years old, meaning that, among this cohort at least, I’m still a spring chicken).

On good days I manage well, and there are more good days than bad. I live independently and socialise regularly. I’m completing a medical degree, and I pour my creativity into writing and stand-up comedy.

But that’s also where I run into trouble: because my disability is reasonably well disguised most of the time, I find myself vulnerable to the persistent awkwardness of having to tell people about it. To repeatedly come out as disabled so that those around me know why I’m behaving a little differently, or why I’m not helping with the chairs. I still haven’t figured out a comfortable way to do it.

Of course, I could simply announce in real time that I have a disability and pre-emptively excuse myself from activities likely to flare up the condition, but I’m afraid that would prompt further questions. An innocent, “Oh, how did that happen?”, could send me careening down the slippery conversational slope of botched surgery, medicolegal lawsuits and deteriorating function. I have to be in a particular mood to talk about any of that, and around particularly safe people.

On the other hand, avoiding the topic entirely feels wrong. Like I’m ashamed and hiding part of myself, which I don’t think I should be. It evokes memories of years spent turning up to social gatherings with extended family and dodging questions about why I didn’t have a girlfriend.

In fact, the closest thing I’ve experienced to this situation in the past is the continual process of coming out as a queer person. There’s the big one early on, when you tell your family and friends, but many of us still come out, over and over again, throughout our lives. Sometimes it’s fine, but other times we need to tread carefully. We may need to take a moment to read the room, gauge reactions and wait for people to adjust. We may even have to calm them down, or reassure them we’re still human and that they can still be themselves.

Having one foot in the closet again puts me on edge. I duck and weave through an unwelcome wave of side-eye, real or imagined, whenever I emerge from parking in a disabled space. If pressed, I’ll quietly explain my condition to a concerned party, but often spend the exchange scanning for a flicker of frustration behind their eyes as they mentally calculate just how much my circumstances will inconvenience them. It reminds me of the flicker of discomfort I used to notice in mildly homophobic men when they realised they’d come face to face with a gay person.

The opposite happens when I encounter an overbearing ally. Some particularly well-meaning people fall over themselves to prevent me from doing things I can do perfectly easily. That sends my cheeks red and prompts further uncomfortable discussion of capabilities.

I think I’m torn between worrying that I’m a burden and grappling with a significant degree of imposter syndrome. I find it hard to situate myself within the broad and diverse landscape of disability. I tick more than a few boxes on the checklist. Locally, I straddle the space between disabled parking permit and NDIS plan. Nonetheless, I’m acutely aware that most of my life has been defined by able-bodied, white, middle-class privilege, and that I still benefit from that privilege in many ways. Other people have it way worse than I do: their impairments are more pronounced or they’ve had them for longer.

It makes me wonder: if my disability varies in severity, if there are more good days than bad, if I can still do things that make me feel happy and fulfilled, am I truly disabled? Or only sometimes, in some contexts? Maybe I’m disability fluid?

This quagmire of identity reminds me of the tenuous sense of belonging I felt all those years ago as a young gay man struggling to situate himself within the LGBTQIA+ landscape. Back then, my instinct was to hide. I keenly remember trying to shield parts of myself from view while growing up a queer kid in rural NSW, both for my own safety and my future goals. I wanted to be an actor but had been convinced there was no space for openly gay people in that world. In hindsight, taking stock of how much things have changed, I regret not being one of the brave people who forged on anyway, pushing back against established norms and helping carve out the space we needed to exist, visibly and authentically.

It was a mistake, back then, to put too much faith in assumptions of permanence. In the same way personal characteristics like sexuality, gender and disability aren’t static, social norms will continue to evolve. They will keep changing as we keep pushing. Having now faced my fair share of battles as a queer person, I’m accustomed to being part of that push. Perhaps that’s why I’m motivated to share this new chapter of my story. Uncomfortable as it can be, revealing hidden parts of yourself can help others do the same.

Coming out can help honour and validate another person’s authenticity, and carve out a little more space in the world for people like you and them to exist in. Ideally, that’s what I’ll bring to my disability identity while I explore this unexpected intersection: the openness to share my experiences with a new community. To listen to others’ stories and learn from them.

As we approach the end of my first day on the job, I excuse myself to go to the bathroom. I don’t really need the bathroom, just a quiet space to sit down for a moment, take some deep breaths and mentally exorcise the pain rattling about my hips and lower back. An hour earlier, at lunch, I downed some pre-emptive analgesia to get ahead of a situation like this, but the pain’s broken through anyway.

I emerge, find my supervisor, and discreetly explain my injury. I tell him I need to disappear to rest my back for a bit. Once settled, I text to apologise for ducking off and assure him I’m really enjoying the work we’re doing. I’m nervous that he thinks I’m lazy or don’t want to be there.

He replies almost immediately:

“Let me know earlier next time. I’m here to help :)”.

Leave a Reply

Your email address will not be published. Required fields are marked *