Tuesday 6 September 2016

Disabled people need a companion. Except when they don't.

"Where's your companion?"

"Is your companion outside?"

"Shall we wait for your companion?"

"Is your companion at the bar?"

"Your companion can sit here."

On Thursday I headed to Melbourne for an event as part of a local festival. I was excited. It was the first time I'd been able to bring my electric wheelchair, Lucille, to the city.

The process of getting a wheelchair did not include modifications to our car, or a carrier (which we eventually purchased secondhand) or a cover for travel (again something we purchased privately), not even ramps into the house (although that was eventually sorted through yet another fund). Finally we had both carrier and a brilliant cherry red cover that could stand up to Victorian weather and freeway travel. 

Here we were in sunny, wet, sunny, wet, sunny, cold Melbourne on the first day of Spring. It was night. I'd been to a bar for a tipple before the event. I caught up with a writer friend. Music was blaring. The streets were full. I'd picked one of my favourite dresses to wear. My ticket was in my bright red handbag. I was excited and sorted. For the first time in years I was able to attend an event alone. Not even a drop off or push to my seat. I got to the front of the theatre bid my husband and son a quick farewell and headed inside while they went off to grab a glass of wine and some food. The freedom and independence was both overwhelming and exhilarating.

"Where's your companion?

"I don't have one. It's just me."

All good. Keep rolling.


Companion question 2

Companion question 3

Companion question 4

Companion question........

Part of it I know was making sure the disabled woman was sorted. It was their job. And don't get me wrong, everyone was pleasant. There was no ill intent.

But it was my chair that prompted the questions. It was my chair that caused concern.

Despite me obviously rolling in alone.

Despite happily sitting alone.

Despite me having said I was alone.

No one went up to any other solo ambulant patron to repeatedly inquire as to the location of their companion. Not to say there weren't others there with disability. Not all disabilities are visible. In fact the majority of disabilities aren't visible. I was one of those invisible disabled people for a lot of years. I required a companion back then. Before Lucille. But no one realised that my husband was being dragged along to an event because I was unable to safely attend alone. I am far more functional with Lucille than I was without her. I am far more visible with Lucille than without her. Yet the more visible my disability the less capable people think I am.

A woman in a wheelchair alone? That's not right. Where's her carer? Where's her companion? Something could go wrong.

Disabled people need a companion. Except when they don't. 

For the first time in years thanks to Lucille I could head out alone. I could be independent. I could go where I wanted when I wanted. I could breathe. But the idea of a disabled person without a carer or companion is anathema, and I was reminded of it once more. Paternalistic attitudes persist. Sometimes enforced by the very processes designed to aid us. And they take the edge off what was a fantastic night.

Asked once, I would have palmed it off. But repeatedly. Well it's hard to ignore.

When I'm already in my dedicated wheelchair seating. When I'm sitting, happily farting around on my phone waiting for things to start.

Finally alone. And suddenly I realise how unexpected that is.

The default position is that disabled people need a companion. 

We can't go out alone.

We don't go out alone.

In reality this is one small example, it happens time and time again since Lucille and I have been able to do things solo, but its also a subtle part of the disability narrative that permeates all aspects of society. Visibly disabled and alone is unexpected. Visibly disabled and alone makes people nervous. Visibly disabled and alone and when asked, I say I'm fine or I can mange, it is frequently ignored. Visibly disabled and alone? The computer says, "no".

The default position is that disabled people cannot manage. 

The default position is that we are less.

The default is reinforced.

All the live long day(s).

When we are patted. Talked to in a singsong Play School voice. When people are overly solicitous. When people are nervous. Will we need something? We must need something? Will there be a problem? Will we bite? When we are pressured to go with an attendant. Go with an attendant NOW. Even when we say we're sorted. Even those times when with a partner who also says it's okay and it's sorted. Because my wheels represent inconvenience, potential problem, and lead to annoyed fluster. When we are in a shop with another person and we are ignored and spoken over like we are not there. When we are told that we are SO brave. When we are told that it's SO good to see us out. When we are told that we don't know our own lived experience. When others want to label us. Or tell us we should act or look a certain way. When people leap like they've just touched an electric fence instead of simply moving aside. It's not catching folks. You'll be okay.

I rolled out of the venue into the drizzle and the night. I managed to go to yet another bar, but my companions weren't my carers. I didn't need them to hold my hand. They were simply my husband and son. I rolled next to them and chatted. Ordered my own glass of wine. And drove Lucille with wild, slightly pickled, abandon through the streets of the CBD giggling and being a smart arse at 1:30am. Then dinked my adult son through the hotel hallways, speeding, laughing loudly, almost crashing, while zigzagging our way to our room.

Sometimes I need a companion. An advocate. A carer.

I'll let people know.

But when I don't?

I just want to go out by myself and enjoy the freedom and independence I haven't had in years. I don't want fluster. I just want to fly under the radar like everyone else. I just want to be. At an event, in a cafe, or at the shops.

I've fought damn hard for this independence.

Don't rain on my parade people.

[Image: a happy green haired woman sits in her red wheelchair in a red carpeted foyer. She is surrounded by people and wears a kick arse black dress with pompoms on the hem, red compression stockings and scarf and knee high boots she could never walk in.]

Bringing out Babs again as she says it so well.