The Last Straw

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Words || Ashley Darling

It is 2018. It’s the height of the straw-ban craze. It’s a normal day for me.

I get up, get dressed, and go to uni. The bus arrives at Macquarie Centre, I buy a chicken wrap meal that, of course, comes with a drink. It does not, however, have a straw. Nor are there any straws available for me to grab.

After, I walk into the uni and sit down with my friends to eat. I ask my friends if they have any straws and they do not. Someone does go to find one for me and I say thank you and continue with my meal.

At home that same day after uni, my family watches TV while eating dinner. An ad comes on where a guy is at a bar, asks for a straw, and everyone glares at him judgmentally. For weeks I had been — and sometimes still am — subjected to anti-straw campaigns and a morality about straw usage. The ad made me feel ashamed that I asked for one earlier, I felt ashamed that I was using one at that moment.

They made me feel ashamed of my disability.

I have three disorders, one is Small Fibre Neuropathy (SFN), the other two I’m not going to disclose. SFN is nerve damage, for me it exists in my toes, the sides of my feet, up the outside of my right leg, down the backs of my forearms, into the side of my left hand, and throughout most of my right. The sensation of nerve damage is not something that is easily described. It feels like pins-and-needles on fire whilst simultaneously being frozen, it’s a loss of sensation yet everything is amplified, and even the brush of a loose thread can be excruciating. It is caused by one of the other disorders and is exacerbated by a fourth. Chronic illnesses are a buy-one-get-a-hundred-free deal.

Three of my many disorders cause me to have tremors, one even means I dislocate my wrists and fingers from time to time. Another causes me to not only have tremors, but also have episodes where I cannot sit up without passing out, for which I require a positionable straw — and no, a bottle with a nozzle doesn’t cut it, when these episodes happen I don’t have enough control to stop myself from letting in too much water.

They are not constant and unchanging, they flare and fade. Sometimes I can hold a fancy cocktail glass and swish it around, other times my hands shake so badly I can’t pick a bottle up without spilling it or hitting myself in the face.

Straws are a necessity for anyone who has shaking, weak or no hands. They make up only a tiny proportion of the population, so a total ban feels very much like an empty gesture.

But what about materials other than plastic, you ask?

They all have issues. A widely distributable alternative must not be a choking hazard, an injury risk, non-positionable, expensive, difficult to clean, or not high temperature safe. Additionally, whether a straw is recyclable or not is dependent on the type of polypropylene used.

I am completely for reducing plastic waste but shaming disabled people for using plastic straws is not the best way to go about your activism. Instead the onus should be on the manufacturer to use the right kind of plastic and/or develop an appropriate alternative.

“But why don’t we just limit straws to disabled people?”

Not all disabilities are visible, my disabilities are only visible through mobility aids. Limiting access like this would likely involve people needing to prove their disabilities. We shouldn’t have to justify our existence in public spaces, and a person’s disability is, strictly speaking, none of your business.

“Am I ableist for previously supporting a full ban?”

Not necessarily. Although you should reflect on why you didn’t consider us sooner.

“I still think we need a full ban/stop whining over something so tiny.”

A minor inconvenience for you is a huge barrier to us. Imagine having every single business refusing to serve you a drink. Imagine people scoffing at you for using oven gloves. No subtitles on a TV in a noisy bar is an inconvenience to hearing people, but it is an exclusion for deaf and Hard of Hearing people. The fact is that for many disabled people plastic straws are a tool that allow us to live our lives. Using people who use straws as an excuse for a ‘moral panic’ masks the people who are actually at fault: the manufacturers.

The whole straw debacle is really just the tip of the iceberg when it comes to power dynamics and the systems of oppression that able-bodied people hold over us. It feels like they are using this as an excuse to claim to be morally superior.

Bringing the straw ban discourse to a wider point would be demonstrative of performative progressivism. The people I see advocating for a total straw ban are usually the same people who will label themselves as ‘woke’ and will say that they support disabled people. In reality, they have no idea what it actually means to be an ally. These people will share ‘inspiration porn’ and claim that by sharing it they are spreading something uplifting and inspirational, when in fact, they have no idea how horribly inappropriate it is. Stella Young’s TedTalk is a great source on this particular issue.

When I advocate for my community I often find myself faced with people who will agree with me face to face, but when I am not around they will harass people in accessible parking spaces who ‘look’ able-bodied. The issue we have here is one of able-bodied people fighting for, and doing, at the very least, basic research into many different forms of activism, yet failing to do so for ableism whilst assuming they already know what we need and what’s best for us. This results in situations where the needs of disabled people will be completely ignored, or even ones where able-bodied people will try to ‘help’ us but only end up doing harm. These people have no idea what we actually need, and think we need things that we don’t.

We all have a horror story or two where someone has moved our mobility aids without permission, talked to us in baby voices, asked us to do something that we can’t do without causing harm to our bodies, or promised to provide accommodations without actually following through — looking at you Campus Wellbeing.

Time and time again, we are being left behind in the broader social equality movement. Australia still has segregated schools. There was an uproar about Trump’s impression of a disabled reporter, yet people fail to mention how his healthcare policy will lead to the deaths of disabled people. Japan had its worst mass murder since WWII, a massacre of 19 disabled people in 2016,  which was a clear hate crime, and barely anyone reported it. I’m in no way suggesting a boycott or anything, but despite the good they’ve done for other groups, Black Panther and Wonder Woman both featured the disabled villain trope and used able-bodied actors, Andy Serkis as Ulysses Klaue and Elena Anaya as Dr. Maru. The highest grossing film of all time, James Cameron’s Avatar, is a cure narrative written by an able-bodied person and 18 per cent of best actor awards at the Oscars have gone to able-bodied actors playing offensive disabled roles, yet only two disabled people have ever won in any category at all, the last of which was Marlee Matlin more than three decades ago. After Stephen Hawking’s death, Twitter was filled with tributes of empty wheelchairs, sometimes with a figure walking away, and comments about ‘leaving it behind,’ despite backlash from the Disabled community labelling it as insensitive.

The moment I finish trying to explain these issues to people, I know what the next words out of their mouth will undoubtedly be:

“I hadn’t thought about it like that.”

I understand that this is a legitimate realisation for you about an issue you knew nothing about, but to me it sends a very clear message. You’ve only just now realised that we deserve equal access. You’ve only just now realised removing our healthcare can be an act of eugenics and genocide. You’ve only just realised that our deaths are ignored in the media, that our disabilities are not an indicator of moral standing, that a cure is not everyone’s top priority, and that abled people shouldn’t tell our stories for us.

You’ve only just realised we are more than a two-dimensional pity receptacle. That within our own community we are diverse in needs. That we are as complex as you are.

When we speak up against what we find offensive, able bodied people still insist that they know better than we do. When we are capable of detailing our argument eloquently, we are told that we are not disabled enough to know what we’re talking about. When we are not, we are labelled as too disabled to know what we are talking about. And when we speak up for what we need, society has shamed us into feeling the need to apologise for asking for our basic rights.

At this point you might be asking, what can I do better? The answer to that is to listen to us, think about us, and raise our voices while not speaking over us. Before condemning the use of straws, hands free umbrellas, or hands free sock aids as unnecessary, ask yourself, who needs this? Will they be hurt by it’s removal?

 

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