Friday, July 13, 2018

Toilet Paper, My Vulva, and the #StrawBan

Image is blue background with four text
blocks. Middle text block reads:
"How to react when a disabled person discloses
their access needs to you: (Explained by narwhals)

a small circular text block/bubble underneath is next to a bright pink cartoon narwhal and reads:

"I need a specific accommodation so that this space is accessible to me!"

The large left side text box has large red letters that say "YES!" on top of black text that reads:

"I am sorry that this space is not accessible!
Everyone deserves to be included, so thank you for bringing this to my attention! You certainly know your needs best and it would be incredibly rude and ableist of me to assume that I know better!
Can you help me by telling me what I need to do or directing me to information so that I can find ways to solve this inaccessibility problem?
We can all enjoy this space together!"

A smiling cartoon orange narwhal is under the text.

The large text box to the right has large red text that reads "NO!" on top of black text that reads:

"But why?
Have you tried doing it this way?
You don't look that disabled.
Why didn't you stay at home if you need so much help?
Are you sure you can't do this instead?
What kind of disability do you have?
That is rude.
How much will this cost ?
Just because you're disabled, that doesn't mean the world has to bend to your will.
You are being very selfish.
Do you have any proof that you need this?
Everyone else is doing it this way.
My brother's co-worker's second cousin once removed has the same disability that you have and they do not need this accommodation.
Wow, it really hurt my feelings that you think this is not
accessible. "

A frowning green cartoon narwhal is under that text.

neurodiversitylibrary.org watermark is on the bottom left of image.
Someone made a choice (without consulting me) about my access to necessary equipment I rely upon for my health, independence, and well-being this week, and I'm not talking about the Seattle Straw Ban, although I've spent a great deal of time discussing it on my personal Facebook page and elsewhere, recently.

No, I'm talking about the Great Toilet Paper Swap of 2018, which shall henceforth evoke visuals of little pilled rolls of fiber, and friction burns in delicate places.

Here's the thing... When Mr. Wright went to the grocery store and saw that my preferred brand wasn't available in the multi-roll package with the roll count he preferred (for savings), he thought it was No Big Deal (NBD) to get a different brand, and save a few dollars in the process.

Saving money was his primary goal, for the good of the family, and he felt accomplished in being so conscientious. I think a lot of us can relate. Being responsible and conscientious makes us feel good about ourselves.

So, what does this have to do with the straw ban?

Plenty.

The first time I tried using the bargain toilet paper, it fell apart. It rolled up into little wads that separated from the sheet, and... clung... to my skin. It was a firetrucking disaster, hygienically speaking.

Access to good hygiene is -- at best -- a health concern, and -- at worst -- a matter of life and death. I think we can all agree on that.
But for many people with disabilities, going without plastic straws isn't a question of how much they care about dolphins or sea turtles; it can be a matter of life or death.

Maybe I'd changed my technique? Maybe I needed a bikini wax? I couldn't figure out what was causing the structural failure of the paper, and I really tried to make it work. I tried dabbing, instead of wiping. I tried drip-drying before patting dry, instead of wiping.

Nothing improved the performance, and it fell apart when I helped my toddler post-potty.

Clearly, THIS SUBSTITUTE for my usual toilet paper wasn't compatible with MY INDIVIDUAL NEEDS, or those of other family members, even though I tried everything I could think of to make it work, because I like to save money, too. I like to feel accomplished and conscientious, just as much as my husband does.

Maybe this paper works for other people. Maybe it works for people without sensory issues, or who have different skin, or who only use it to groom butterflies, or whatever. But it doesn't work for my family.

While reusable straws and redesigned cups may be a great solution for most people, they are not an option for many people with disabilities. For example, paper straws, which are most often cited as the best alternative, are not temperature safe, often dissolve in water and can become a choking hazard. As for lids designed to be used without a straw, they require the cup to be lifted by the user, which many people cannot do.

So, I went to Mr. Wright, and I said, "Hey. I know you don't have a vulva, so your experience is going be different than mine, I know. You don't have all the extra folds and bits that come with vulva ownership, so you might not understand, but this new toilet paper really doesn't work. It keeps self-destructing. It's kind of gross, and could we get rid of it, and replace it with the stuff we normally use and rely upon? Could we donate it to someone who might be able to use it without tissue issues?"

And he said, "Wow! I didn't know that was happening! As the only male in the house, I didn't that about how changing our toilet paper might affect the rest of you. I just thought about the savings. Thank you for letting me know. Of course, I'll make sure you have toilet tissue that works for you. Your vulva is important to me!"

I know some of you are wondering why this exchange was, and is, significant.

I know some of you are thinking, Of COURSE he should get you the toilet paper you need. It's such a simple thing.

And, I know others of you are thinking, What's the big firetrucking deal? It's TOILET PAPER! Just go get some, yourself, or use what's available, and deal with it. WHY IS THIS SO HARD?

The toilet paper doesn't work for me. It doesn't work for my daughters. He loves us. He wants us to know we're important. He's headed out to get toilet paper we can use.

He's showing us his respect and understanding, by making what we need available. He's showing us we're important to him, and our needs matter, even though they aren't the same as his.

It was so simple, and so easy to resolve. I communicated a need. I explained why the conscientious, money-saving solution didn't work for me, personally (or the other females in our home), and what was needed, instead.

And he responded by acknowledging my need, understanding that his experience is not the same as mine, and offering a solution that ensured I have access to what I need.

That's how it should be.

Unfortunately, I've watched the disabled community get marginalized time and again since news of the straw ban hit.

Many disabled people rely on single-use plastic straws, as a matter of survival. My grandfather, who was paralyzed in his final years, was simply one of many, many people who rely upon single-use plastic straws as a matter of access, independence, or literally life-versus-death.

Although there are numerous alternatives to plastic straws, such as metal, acrylic, glass, wheat- or corn-based compostable, paper, and more, some of those alternatives don't work for some disabled folks.

For my grandfather, metal, acrylic, glass, or other rigid designs not only posed a choking hazard, but also posed an elevated risk for cuts, tooth damage, and more, since he had tremors and diminished jaw control.

For folks who have allergies to corn or wheat, or celiac disease, bioplastics or straws made from those materials pose a definite health risk.

Paper straws tend to break down and can pose a choking hazard, especially for those who may need more time to consume fluids.

Some of the alternatives don't work for thickened liquids required for the nutrition of some disabled people.

I could go on, but suffice it to say that for some people, alternatives to single-use plastic straws don't work.

Naturally, for the good of the planet, we should all do as much as we can to reduce our planet's reliance on petroleum products, and reduce our waste and consumption of single-use packaging and utensils as much as possible. HOWEVER, it's simply not possible, for some of the disabled community.

Further, some of the discourse on the subject has been particularly disturbing, as disabled folks are being openly ignored, talked over, or shamed for their needs when they try to explain to the abled community what their specific needs are, and why an outright ban doesn't make for good policy.

(Image is a pink cartoon narwhal under a white bubble with question marks, an image of the earth and a plastic straw. Black text to the left reads: 
"How do plastic straw bans hurt disabled people?
Many disabled people need plastic straws to eat and drink. It provides access and they are literally keeping some of us alive! We don't hate the earth, but we really like being alive and able to access our communities!
-Paper and biodegradable straws break down faster than many of us can use them.
-Metal straws can cause injury if they are too hot or cold and also if the person has a disability that affects movement and motor skills.
-Reusable straws are great if you have the ability to wash, store and bring them with you every time you leave your house. Many disabled people do not.
-If you don't need a plastic straw, then don't use one, but you don't need to hurt disabled people to show that you love the earth.
-Punishing disabled people who need plastic straws to live will have very little impact on the environment but looking into creating a more viable and ACCESSIBLE alternative to single use plastic and placing greater regulations on businesses that are polluting the earth on a much larger, much more dangerous scale sure would!"
neurodiversitylibrary.org)


I've seen commenters say that the disabled should use reusable straws. When the disabled say they can't wash them, the abled say they should hire or recruit someone to come to their house to scrub their straws for them -- as if everyone has a budget to hire staff, or neighbors who are willing to sacrifice their time and effort on a regular and reliable basis, without compensation.

While the above might be, at best, attributed to the abled being out of touch, some of the backlash against the disabled has been worse:

"If you're too disabled to scrub a straw or use paper straws, you should have a feeding tube." Which, by the way, use single-use plastics, too. Ha.

"If you're too disabled to go without a straw, you shouldn't be visiting restaurants."

"We should only have flexible plastic straws in hospitals, convalescence centers, and nursing homes, because that's where disabled people belong."

"Disabled people are just making excuses!"

"Our planet is more important than their needs. Survival of the fittest!"

Readers, you may or may not know that Mr. Wright is a Norwex consultant. We use stainless straws at home. We use reusable, washable produce bags. Reusable shopping bags. Phosphate-free, natural cleaners, soaps, detergents, and more. We use dryer balls instead of dryer sheets. (Shameless plug... we get all these from Norwex, and you can, too, at the link I've provided.)

Our family -- while having disabled members -- remains incredibly privileged. We do our part to reduce/reuse/recycle, to offset the needs of those who can't.

When it comes to the needs of an already marginalized and disenfranchised population, can't we feel good about the choices we make, while ALSO providing access for those who don't have a choice?

Bottom line: If you don't need a single-use plastic straw, don't use one. The planet thanks you. But don't shame, degrade, or devalue those who do need them. Access and independence are for everyone.



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