The problem is that plastic straws are necessary for the survival of people with certain disabilities. Necessary for Survival. Without them People Will Die.
I wish I could say that that statement marked the end of the matter and the question of whether or not it is worth proceeding. Instead, what’s followed is endless weeks and arguments about whether we’re really sure that’s we will really actually die, and don’t we know that that doesn’t really happen.
While I’m not one of the people directly affected by this ban, I say we because while the specifics here don’t apply to me, I recognize all too well ALL of the arguments that showed up during the debates. They’re the same arguments I’ve faced whenever the subject of any disability accommodation comes up. These same themes form many of the backbones of systemic ableism. They are the arguments that are essentially used to excuse banning people from immigration on the basis of disability, the arguments against raising disability support payments, putting together socialized pharmacy care, building accessible housing, providing easy accessibility, and so on and so forth.
- Presumed Incompetence: But Have You Tried Yoga?
Ok so people don’t actually suggest Yoga as a solution to this problem, but whenever the subject comes up, people’s first instinct is to argue. In fact, there is a good chance your first response when you read the introduction was to think something along the lines of “how about paper/silicone/metal straws” or some other proposed alternative.
I want you to consider something for a moment. Imagine there is a law about to be passed making something you need to survive – illegal. Not having access to this thing means you will starve to death. It means you will die of thirst. What do you do?
Obviously you try to stop the law, but you also look into possible alternatives or solutions. You look into other options that might work to stave off death. Right? You do what you can to save your life right?
So why do we assume less of disabled people? Why do we assume that disabled people are incapable of looking into alternatives?
This is not an uncommon reaction to disabled people of all varieties when they try to talk about their experiences and needs. When we express some sort of lack – a lack of money because disability is not enough to live on for example – it’s always assumed that the lack is the result of some failure of budgeting, some inability to plan, research, it’s always assumed that the struggle is the result of incompetence.
The same is true when we discuss issues like our symptoms, or pain, or other aspects of our reality. People can’t seem to stop themselves from offering suggestions, often the same one we’ve heard a thousand times before. It may come from a good place, the desire to help, but even when it does it still comes with the implication that we are just not trying hard enough to get better. That we haven’t tried absolutely everything to not feel like this, to not have these problems. That we’re just sitting here like a trapped princess in a castle, waiting for some magical hero to pop in with the magic words “Hey have you tried CBD oil?” and boom everything will be solved!
It gets to the point where we feel like we have to list every single thing we’ve ever tried or why it didn’t work for us, and also provide a link to our complete medical file, just to be allowed to talk about our reality without having to spend time answering intrusive questions that distract from the point we are trying to make.
Having people constantly question our ability to understand our lives, our symptoms, our own experiences and feelings is gaslighting. It’s a form of social abuse and a way to silence us from pointing out the very real systemic issues that exist. After all, you don’t have to listen to us about how your actions make it hard for us to survive if all our struggles are really just us not trying hard enough.
I’ve talked about this connection before when I challenged people to consider dropping ableist language for a period of time. I’ve talked about how the various suggestions that always follow discussions of our disabilities continue this idea that even our disabilities are the result of not trying hard enough. The assumption makes it difficult to change the situation since no matter the problem the answer is always that we just aren’t trying hard enough to be normal.
- Burdening the Burdened: Well it’s your problem so you solve it.
It’s the “Stop Hitting Yourself” of living as a disabled person. So often the difficulties we face are externally created – facing homelessness because disability doesn’t offer a realistic housing allotment, being unable to navigate outside because curbs are left without ramps, and there is little pressure on places to meet even just basic accessibility standards, being forced onto disability because finding a job is impossible when you are assumed incompetent – and yet when those self-same issues are discussed, if they’re taken seriously at all they’re considered to be “our” problem and so up to us to solve.
Solving it often comes down to money. The cost of providing accessibility is high and it’s far outside what many of us can afford. Even when the financial cost can be limited, there is often an energy cost that makes that limitation also inaccessible.
Asking disabled people to provide accessibility themselves is often telling disabled people to go without.
This usually goes hand in hand with the idea that our needs are somehow special, when really they’re the same needs as anyone else’s, it’s just that the method of acquiring them differs.
In the straw debate, the need is food and water. A basic need all of us have. We can’t turn off our need for food. We can’t survive without water no matter how hard we try. Some people need a straw to make getting food and water possible.
How would you feel if the government passed a law that made it impossible for you to get food or drink? I don’t even mean physically having them, but just from being able to physically consume them?
- Segregation and Silencing: Quiet You, People are Speaking.
For many people, the perception of disability is that it’s relatively rare. Even if they think they support accessibility, they may have still found themselves wondering how many people are really affected by a certain issue, and whether it’s really worth spending money to accommodate “just one or a few people”.
The problem of course is that inaccessibility is part of the reason why this perception exists. By making parts of society off limits to certain people, the people who frequent those places will never see those same people. Similarly, by keeping disabled people poor through inadequate support, society makes it more difficult for us to become full members of our communities, to participate in events, or even to go out to local businesses. It keeps us isolated.
If people can’t see us, then they can pretend that we don’t exist. They can ignore the stories they hear from the few of us they may know as just being dramatic. They can silence our stories with advice about what we’re doing wrong, rather than recognizing the systemic problem that exists.
If we don’t exist, then we don’t have rights, and it doesn’t matter if you hurt us.
- Gatekeeping: Beg for Your Life Dog.
One of the tactics used to make it seem like we are less common than people pretend, is through arbitrary rules decided by abled people as to what qualifies as being “really disabled”. For some reason, people with no experience with chronic illness, with impairments, feel qualified not only to decide whether or not our experience is valid, but whether or not we really need certain accessibility devices.
I’ve experienced this personally, when I was denied access to a wheelchair because pain meant I didn’t really need it. Instead I was offered a manual device that would, if anything, make the whole situation worse.
Many of us have experienced this when faced with people questioning whether we’re really entitled to that disabled placard and that it’s meant for “really disabled” people.
It’s something we face constantly – having to specifically request certain accommodations and then waiting with baited breath to see whether something we might need to survive will be granted us. I’m facing this situation right now in waiting for subsidized housing and trying to get them to take my impending homelessness seriously. I am facing this situation right now as I wait to hear back from ODSP as to whether I still get to receive disability. See my application was accepted conditionally five years ago and now I have to prove that I’m still disabled. I don’t know whether I will suddenly find myself without any money at all. All because someone who knows nothing about my medical history, about my life, feels qualified to decide whether I’m really disabled.
Now imagine letting anyone working in a restaurant or store get to decide whether you are really disabled enough to actually need a straw to live? Imagine knowing that every time you ask for something basic to your survival, you will be forced to accept having to answer intrusive questions, face shaming, likely face people making suggestions about how you should manage your impairment, and then after all that possibly decide for you that you don’t actually need it.
- Acceptable Sacrifice: We All Have to Make Sacrifices
In a pinch, if you had to save the life of a turtle or a quadriplegic, who would you choose? What’s the first thing that pops into your head.
Ultimately, that’s what this whole debate boils down to, although it is not only quadriplegic people who may require disposable straws to survive, and it’s not only this one issue were these decisions are the case.
Disabled people get told on a nearly daily basis that our lives are worthless. It can come from loved ones, from friends, from random strangers, from our governments, from our neighbours, it can come at us from every quarter.
For everyone article in the newspaper about being forced into “choosing” euthanasia, about facing homelessness because disability isn’t enough to live on, about facing forced institutionalization because the province is unwilling to provide you with the means to live independently, there are hundreds of people living variations of these same issues. There is a major crisis in many countries of disabled people being failed miserably by institutions nominally set up to help them. Disabled people have among the highest rates of being victims of abuse, of sexual assault, they have some of the highest rates of murder by a family member, of poverty, of employment discrimination.
The inaccessibility of the world and extreme struggle of being on disability have made disability and depression have a co-morbidity rate so high, that it’s truly not an exaggeration to say that the system is designed to encourage us to end our own lives.
We get blamed for being dramatic when we point this out and yet, how often have we heard in these arguments the idea that “we all have to make sacrifices”.
When we point out exactly WHAT is being said – that the death of disabled people is an acceptable sacrifice in the name of environmentalism – we get told that we’re exaggerating and that no one wants disabled people to die. We know better. Because we hear it every day. Paying a few extra pennies each year isn’t worth creating a more realistic disability support system to empower disabled people to actually live in this world and not just struggle along in it. Making improvements that would benefit even abled people isn’t worth the hardship of having to learn a different way. The fact that my medication is helping me doesn’t matter because it costs too much and you’re not getting better enough for us to not have to pay for it anymore. You’re too expensive to keep alive. You’re not worth the investment, you’re just a burden. you’re just worthless. You’re not worth keeping alive. We would be better off if you were dead.
The sacrifices being asked, are not being asked of those making the decisions, but of those being actively prevented from having a voice in those same decisions. The sacrifice is being asked of people who have the least ability to sacrifice so that they are being asked to give their lives for your ideals.
These arguments by themselves remind us just how little we matter. How little our voices matter to society. How invisible we are. How even begging for our lives is asking too much.
