Straws, Neurodiversity, and Disability – Ryan Boren

As a society, we are far too quick to write off the concerns of marginalized groups as insignificant or inconvenient.

Source: There’s an unexpected downfall to banning plastic straws. Here’s what to consider.

When disabled people tell you what’s up, listen. Design and policy are tested at the edges. Thinking you can solve a complicated accessibility issue you’ve never previously pondered in the span of a Twitter thread is ableist, dismissive, and condescending. We live this. We live the medical ableismmedical misogynypolitics of resentment, and inspiration porn. We know how accessibility degrades to accommodation degrades to resentment, exclusion, and shame.

Listen to lived experience. If you consider yourself a liberal, if you care about social justice, get structuralget socialget equity literate, and listen.

Suddenly Leo jumps up from the table again and says to his father, “Green straw?” It is not yet time for his first green straw of the day, but he will get one before the school bus pulls into the driveway— one of tens of thousands of wide, bright green Starbucks straws that Leo has used over the years for the purpose of stimming (self-stimulation), one of the things that autistic people do to regulate their anxiety. They also clearly enjoy it. When nonautistic people do it, it’s called fidgeting and it’s rarely considered pathological.

A red straw from Burger King can occasionally fit the bill, or a blue one from Peet’s. Clear straws from Costco just don’t cut it. But a green straw from Starbucks is Leo’s Platonic stim. If Shannon allowed him to do so, he would take a green straw to bed with him, or even better, a pair— one between his lips and the other in his toes. He would stim in the bath, on the toilet, and jumping on the trampoline.

Source: Silberman, Steve. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (p. 48). Penguin Publishing Group. Kindle Edition.

Every few months, another city, state, or country announces that it’s banning the use of plastic straws. These policies are meant to lead the way in removing plastics from the ocean, but, according to our best estimates, straws are not a major source of marine plastic pollution, and such laws are unlikely to have a noticeable affect on the levels of plastic entering our waters. The proposed bans do, however, have the unintended effect of making restaurants less accessible for many disabled people, while revealing the ableism embedded in far too much consumer-based environmentalism.

There’s a better way. Instead of bans, we should shift all our use of disposable plastics from opt-out to opt-in. At the same time, let’s recognize the limits of focusing on consumer choice. Want to reduce plastics in the ocean? Make the producers pay for their waste.

For Peters and many other disabled people, the fixation on banning straws feels arbitrary. As I wrote for Pacific Standard last year, straws provide a simple, accessible means for many disabled people to drink. My son, who has Down syndrome, is one of them. His mastery of drinking through ubiquitous plastic straws makes every restaurant and gas station a place where he can a drink without worrying. Straw bans erode that easy accessibility. Moreover, every time people like me raise the importance of plastic straws, we get bombarded with well-meaning attempts to inform us about the exciting new world of metal, glass, bamboo, paper, and compostable straws. There’s a kind of implicit dismissiveness behind the idea that people who rely on plastic straws for hydration might not ever have considered alternatives. For my son, as with many others, plastic straws offer a remarkable combination of affordability, tensile strength, and flexibility. While some disabled people can use or even prefer harder reusable straws, metal, wood, or glass straws can be dangerous, uncomfortable, or ineffective for others. Compostable straws made of vegetable matter have a similar feel as standard plastic straws (and my son likes them), but they are vastly more expensive than plastic straws and raise concerns about food allergies.

There’s a real tension between consumer-based environmentalism, and the need to maintain and expand accessible options for disabled consumers, which often involve plastic. It’s good to raise awareness about waste, but I’ve been struck over the last year by how often conversations around straws quickly grow hostile. People are so eager to tell me about other kinds of straws, assuming we haven’t tried or are woefully uninformed. I wish these people might learn to trust that disabled people, as disability scholar Kim Sauder recently tweeted, generally know their needs and how to meet them-unless they ask for advice.

Let’s put our efforts where the money is, rather than shaming disabled consumers who just want an accessible drink of water.

Source: Banning Straws Won’t Save the Oceans – Pacific Standard

Here’s the problem: I need every restaurant and gas station in America to have straws, preferably plastic and bendy. My son, a 10-year-old boy with Down syndrome, has never quite mastered that complex series of motions to drink consistently from the lip of the cup. What he can do, though, is curl his tongue around a straw and create appropriate suction to drink, which was quite the triumph when he first learned it. A whole world of easy hydration opened to us. My family is not alone. Straws are a wildly successful example of assistive technology for millions of people with diverse abilities, all of whom are best served by ubiquitous straws. If Grenier gets people to stop sucking, what about my son?

There’s a deep tension between environmental consumerism and accessible consumerism. Many disabled people have come to rely on prepackaged foods, single-serving products, plastic cups, and yes, straws. On the other hand, there are those in the environmental movement who use shame to push people toward better individual decisions for the environment. Last year, a Twitter user named Nathalie Gordon posted a picture of plastic wrapped pre-peeled oranges, taunting: “If only nature would find a way to cover these oranges so we didn’t need to waste so much plastic on them.” It rapidly went viral and today has over 100,000 retweets and likes.

But for many disabled people, these pre-peeled oranges were wonderful. Kim Sauder, who is both disabled and a disability studies scholar, wrote a retort to Gordon, explaining, “As a person with limited hand dexterity, I look at this and see an easier way to eat healthy food.” Sauder, over email, told me that variations on the orange story keep re-appearing; recently, she heard folks yelling about plastic-wrapped peeled avocados. For her, straws and the #stopsucking campaign are part of the same pattern. As Sauder says, “The battles that environmentalists choose to wage are small and focused on products whose removal disproportionately affects disabled people.” Sauder understands why focusing on small things, especially those perceived as unnecessary, is easier than looking at the big picture. Still, she’d like us to focus on “the overall use of plastic,” even though that’s a tougher and more ambitious conversation. We need, Sauder says, to emphasize “systemic change rather than a perceived small sacrifice.”

People advocating for more environmentally friendly systems need to think about the ways that diverse people access the world. Before you eliminate a consumer system for ecological reasons, remember that many folks rely on convenient technologies, however environmentally unfriendly. That means persuasive messaging must avoid shaming those who need the technology. Because I want us to all stop sucking, but mostly, I want my son to have a drink.

Source: Saving the Oceans With My Son and Adrian Grenier – Pacific Standard

Disabled people who shared their concerns, frustrations and criticisms of the straw ban on Twitter, many attempting to patiently explain why they are a necessity for some, have received hostility from many and support from few. The ‘just curious’ want to know why the alternatives aren’t good enough for disabled people and despite the abundance of articles, handy info graphics and tweets addressing that, seem incapable of finding the information out for themselves. Or perhaps it’s because those aren’t detailed enough and don’t explain exactly what is ‘wrong’ with the disabled person that prevents them from drinking without a straw.

If you write policy as if disabled people do not exist and as if discrimination against disabled people does not exist, then you almost certainly write discrimination into your policy.

Non-disabled people have questions and it is my job to answer them. This unasked for, unpaid position is one I was given when I became disabled. One moment they are curious about why some disabled people need straws, the next it will be something else.

If you spend time on social media, you may have noticed disabled people who don’t use straws understand why some disabled people do – without knowing the specific reasons.

Though the specifics of our situations differ in important ways and are affected by components of our identities beyond disability, the experience of being disabled in a society that excludes, devalues, demeans, objectifies, dehumanizes, degrades and pities disabled people, is something we all have some familiarity with. Our struggle against it is what unites us, not our particular medical diagnosis or accessibility needs.

Source: Curiosity: Vancouver’s Straw Ban – Another Barrier and Another Excuse For Non-Disabled People to Shame, Marginalize, Interrogate and Demonstrate They Don’t Care About Discrimination Against Disabled People | mssinenomineblog

A soggy paper straw increases the risk of choking. Most paper and silicone alternatives are not flexible, and this is an important feature for people with mobility related impairments. Metal, glass and bamboo straws present obvious dangers for people who have difficulty controlling their bite, as well as those with neurological conditions such as Parkinson’s. Some disabled people use straws when drinking coffee or eating soup, yet most of the alternatives, including the leading biodegradable straw, are not suitable for drinks over 40°C. In addition, re-useable straws in public places are not always hygienic or easy to clean.

Source: Guest Blog: Action on plastics shouldn’t make life suck for disabled people – Greenpeace Canada

But making disabled people pay for something that’s available to everyone else for free is a type of tax. While it’s not necessarily an expensive tax, these types of things add up, and implementing a policy that makes the simple act of drinking prohibitive to certain groups sets a bad precedent.

“We need to make straws accessible to those who need them,” she says. “Don’t turn them into a medical item, which will negatively affect availability and lead to increased expense and stigma.”

What makes the entire debate over straws that much more confusing is the fact that disposable straws don’t actuallycontribute much to the abundance of plastic waste relative to other items in the ocean. So by proposing a ban on them, we’re asking disabled people to sacrifice a lot in order to gain just a little in the fight for environmental health. And by doing that, we’re demonstrating a frightening lack of empathy.

As a society, we are far too quick to write off the concerns of marginalized groups as insignificant or inconvenient.

Source: There’s an unexpected downfall to banning plastic straws. Here’s what to consider.

“We’re really kind of vilifying people who need straws.” Other environmentalists aren’t sure that banning straws is gonna do much, and point out that banning straws is not an entirely rigorous approach to global systems change, considering that a widely cited estimate for the magnitude of the problem was, umm, created by a smart 9-year-old.

All this to say: The straw is officially part of the culture wars, and you might be thinking, “Gah, these contentious times we live in!” But the straw has always been dragged along by the currents of history, soaking up the era, shaping not its direction, but its texture.

The invention of American industrialism, the creation of urban life, changing gender relations, public-health reform, suburbia and its hamburger-loving teens, better living through plastics, and the financialization of the economy: The straw was there for all these things-rolled out of extrusion machines, dispensed, pushed through lids, bent, dropped into the abyss.

You can learn a lot about this country, and the dilemmas of contemporary capitalism, by taking a straw-eyed view.

Source: How the Disposable Straw Explains Modern Capitalism – The Atlantic

“We’re really kind of vilifying people who need straws or forgetting about them completely — let’s be honest — in encouraging shaming people who are asking for them.”

“Where do I get that straw? Are straws then going to be something you buy at a medical supply store? And as soon as you do that they become more expensive and they become less accessible,” says Peters, on a fixed income of disability benefits she estimates at $1,100 per month.

“You’re just adding that cost to me.”

Source: Anti-straw movement isn’t considering people with disabilities, advocates say | The Star

 

 

Source: Straws, Neurodiversity, and Disability – Ryan Boren

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