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The Big Reveal: 'I can't stand up'

Friday 2nd March 2018

To come out, or not to come out as disabled?


Illustration: Pinky Fang

“If only I could tell you how I feel then I wouldn’t have to sit and think about losing you, but it's just a dream I have in my head.” 

The single Dreams in my Head was the first song I heard from Anika Moa’s album In Swings the Tide. 

When I heard this song, I related achingly. This was Moa’s first album on which she openly sang about loving women. Though I can’t put a date on it, I had recently realised I might not be straight. Unfortunately, this manifested itself as young me falling heart-first for my straight friends. Classic. So there I was, in my teenage bedroom, doing a good impression of heartbreak. In Swings the Tide was on high rotate and turned up loud. 

Apart from being a source of angst, and the inspiration for my own bad singing and novice love poems, coming out wasn’t really painful in the way I know it can be. My parents, siblings and wider family responded with knowing shrugs and promptly changed the pronouns of the future partner they assured me would exist. 

Nothing much changed and besides, the feeling of having a minority identity - of coming out even - is kind of familiar. This is because I have a  disability. The sight of my wheelchair draws questions that queer folk will find familiar: 

Do you mind if I ask…? How long have you been this way? Have you ever tried…?  [insert binary gender or alternative medicine here] How do you have sex? Can I pray for you? Have you met [insert random name of person from the minority]...?

Are you sure you don’t need help? Really? How do you still manage to…. [insert everyday activity, normal milestone and/or the very fact of being alive]? 

The other similarity between my queerness and disability is pride - something we are managing to talk and sing about as queer people but are still learning as disabled folk. The themes, I’ve noticed in both cases, are mostly about how long this has been going on and the doubts people have about how they imagine your life to work. There is sometimes the implication you would choose another life, given the chance. The underlying assumption is:  Who would want that life and identity? We do. Not for its potential awkwardness or the life lessons it might offer, but because it is ours. Invasive as it sometimes feels, I'm used to it. 

I let the wheelchair introduce my disability as I know it inevitably will. The rare times I am without my wheelchair, I have to make a conscious decision to “come out” as disabled. 

It is a slightly unnerving decision to make. I always feel that I am holding something back from people. Something they should know. Not because I want them to know, not because I feel they should have the chance to ask questions. Simply because all my cards would usually be on the table by default. 

When I talk to disabled friends, particularly the ones without visible mobility equipment like  wheelchairs, they tell me they navigate this line a lot. Stories of being scowled at on buses for not giving up their seats to Gold Card holders or being kicked out of bars because their speech is mistakenly thought to be slurred by alcohol, not impairment. Funny and awkward and mundane. 

I like the stories that make me laugh. Lately through, I find myself negotiating whether to disclose my disability in situations where the stakes seem too high to make a joke of, where it could earn me more than a sideways glance or an awkward interaction. More and more with interactions online, I make an active choice to disclose or not. Looking at job applications, I wonder how much to say, knowing that it would cost me the work. And this is not just me - but a sometimes daily decision for many disabled people - weighing up what claiming that label will mean. 

For me, one of the places this happens a lot is on aeroplanes. 

I am always seated first. Getting me on board is a bit of a dance and takes time. And maybe, there is a feeling that it stops me being stared at. But it also means no one knows. I get to choose who knows what. Sitting tight and absently watching the music videos the airline is playing to pass the time. It feels like going incognito. 

That is until I have to explain to the people seated one and two seats over that they will need to clamber over my legs. It is a shorthand. ‘I can't stand up’, I say, not wanting to get into detail. Not wanting to risk the questions, opinions or worst the praise, ‘I wouldn't travel if I were you.’ 

This time I have the spiel on the tip of my tongue, when the woman making her way to sit at the window interrupts my thoughts: 

“Are you going to stand up?”

“I can't.” 

She seems put out. She huffs past me hefting her baggage with her. It seems like an overreaction to me. What?  Does she not get it?  Anyway, she's found her seat now so I won't have a chance to explain until the reverse procedure is due to take place. In fifty minutes starting now. I mull for a while about how I will explain myself. 

My thoughts are again interrupted by the trundling of the catering trolley. The flight attendant leans in to ask the routine question of coffee, tea or mineral water. I opt for coffee and play at guessing what my fellow passengers will choose. When the she asks the woman two seats down what she will have she adds: “Huh, we played one of your songs before the flight!” This is great kiwi service, laughing together at the two degrees of separation. 

And then it hits me, who the woman is. Oh. The younger version of myself blushes on my behalf and I look down at my feet. I always hope that because I don't like personal questions myself I will be able to play it cool around my heroes. This is never the case. This is going to make disembarking more weird. Can we just skip it?

But the plane lands as it is meant to. The man seated between us climbs discreetly past me. 

And then she rescues me. Shifting across to sit next to me she says: 

“Hi, I'm  Anika.” 

“Yeah, um… I know.” I steel myself, not to say anything stupid. 

She apologises, having realised what I meant about standing up.  

“That's okay.” 

We talk about our trips away, both heading home. I garble something deeply unintelligent about music and don't mention heartbreak. 

As usual I get off the plane last. 

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