Monthly Reading List: Straw Ban Edition

Monthly Reading List title over a background photo of open books on a table

This month, I am sharing articles about the movement to ban plastic straws, and the impact on disabled people who rely on plastic straws to be able to drink safely. But instead of carefully curating my “favorite” pieces, I decided to ask Google. I was curious to find out which articles come up first when you type in “straw ban disability.” So here are the top 8 articles, in exactly the order presented. They are all fairly good and comprehensive. I also find it interesting that the 8th item is from an apparent environmentalist publication, and it appears they at least know and are willing to report the main outlines of the problem.

Five different colored plastic bendy straws

1.  Why People With Disabilities Want Bans On Plastic Straws To Be More Flexible
Maria Godoy, NPR Morning Edition - July 11, 2018

2.  Plastic straw bans are the latest policy to forget the disability community
Karin Hitselberger, Washington Post - July 12, 2018

3.  4 things we learned about plastic straw bans from people with disabilities
Soraya Ferdman. Mashable - July 16, 2018

4.  Banning straws might be a win for environmentalists. But it ignores us disabled people
s.e. smith, Vox - July 19, 2018

5.  Why banning plastic straws upsets people with disabilities
Ayana Archie and Dalila-Johari Paul, CNN - July 11, 2018

6.  Disability rights groups voice issues with Starbucks’ plastic straw ban as company responds
Molly Enking, PBS NewsHour - July 18, 2018

7.  'Disabled People Are Not Part of the Conversation.' Advocates Speak Out Against Plastic Straw Bans
Gina Martinez, Time - July 12, 2018

8.  Plastic Straw Bans Have Unintended Consequences for People with Disabilities
Olivia Rosane, EcoWatch - July 17, 2018

Honestly, I think the most aggravating part of this whole topic isn’t the articles like these … even when they’re not perfect or complete. The real garbage comes in the comment sections. Come to think of it, comment sections are usually the worst parts of just about all internet-based disability discussions.

Disability Thought Of The Week: Awareness Kinda Sucks

Disability Thought Of The Week on a yellow legal pad background

I think one of the central questions of disability culture is:

Why am I, as a disabled person, better off being more knowledgeable about disability history, more aware of the struggles of all kinds of disabled people, and more cognizant of the power and reach of ableism? Why is it better that I am the way I am now ... constantly aggravated and worried by disability issues ... instead of the way I used to be ... moderately bummed about my "limitations" but basically fine? I am by any measure a lot angrier than I used to be before I got deep into disability activism and culture. I mean, I’m not angry all the time ... though I know some of us are. I’m really not the angry person type. I enjoy my life. Still, I used to not be angry at all about things related to disability that I am definitely angry or at least disturbed about now. So how is that better for me?

Put another way, if you’re disabled, and your life is going fairly okay ... fair to middling ,,, what’s your incentive to get involved in disability issues and expose yourself to all these upsetting things?

I think there are some sensible answers to this, but that’s for another week. To be continued ...

YouTube Vlog Idea

"Vlog" logo on a mixed dark and light blue background

Back in April, I wrote that I would be working on something new for Disability Thinking, possibly a vlog … a series of video pieces on YouTube. I’m still working on the format, but I think I have an idea to give the thing structure.

The tentative plan is to make short 15-20 minute videos that discuss one or two terms related to disability and disability culture, starting with words that start with an “A” and going through the whole alphabet all the way to “Z”. I would plan to share my own thoughts on each term, and probably invite viewers to send in comments ahead of time that can be shared. I did some brainstorming on terms, and here is what I have so far:

A    Ableism, Accessibility, Advocacy
B    _________________________
C    Crip, Chronic Pain, Chronic Illness
D    Disabled, Differently-Abled, Discrimination
E    Erasure, Eugenics
F    Functioning Labels
G    Guide Dog
H    Handicapped
I     Inspiration Porn, Independent Living, Intersectional
J    _________________________
K    _________________________
L    Long Term Care
M    Medical Model, Marginalized
N    Neurodiversity
O    Oppression, Opioids
P    Prejudice
Q    Quad Rugby
R    Representation
S    Self Advocate, Social Model, Special Needs
T    _________________________
U    Undue Burden, Universal Design
V    Vocational Rehabilitation
W    Wheelchairs, Willowbrook, White Cane
X    _________________________
Y    _________________________
Z    _________________________

I’d welcome any suggestions to fill in the alphabet. If it’s any good at all … meaning if anyone watches and listens … I would also consider some special programs for Patreon subscribers … such as Q&As and guest interviews.

Obviously I’m still working on this, but I hope to post something on actual introductory video on YouTube sometime before the end of this Summer.

Disability Thinking: Do you talk about disability?

Disability Thought Of The Week on a yellow legal pad background

This week I have been thinking about why so many people still seem so ill-informed about disability issues. I have a theory I’m working on, but before getting into it, I want to get some feedback through a brief anonymous poll.

Click here to complete the survey

There will be followup to this in a couple of weeks, hopefully with a more fully-developed theory and some suggestions for making things better.

Disability Thought Of The Week: The Straw Thing

Disability Thought Of The Week on a yellow legal pad background

I have a confession. When I first heard about the movement to ban plastic straws, and the anger of disabled people about it, I thought the whole thing was overblown. Although I have disabilities, I have only once or twice in my life needed to use a straw to get a drink. And that lack of immediate experience I think contributed to my initial belief that while it was a valid conflict and straws shouldn’t be so quickly and thoroughly banned, there was far too much anger about it on both sides.. In a way, I think there still is, because the thing should be easily resolved.

- The straw ban people should probably shift into a public persuasion campaign encouraging people who don’t need straws to request no straws when they order drinks at bars and restaurants.

- The disability community should probably accept something like that as a win, and maybe stop claiming, as a few of us have, that the straw ban is happening because non-disabled people hate disabled people.

Note: My own interpretation is that straw bans are happening because of the usual obliviousness and neglect of disabled people and disability concerns that occurs when non-disabled people get all excited about a brilliant plan ... whether it's a social justice movement, a conference, or a building. Indifference like this may seem to activists like a weaker, less motivating explanation than hatred, but not to me. Indifference towards disabled people is terrifying, and enormously harmful.

If we can secure the continued existence and availability of plastic straws for all who need them, then maybe we can also stop getting worked up over these small-bore personal environmental initiatives and organize instead around some serious push-back on the Trump Administration’s environmental policies.

Meanwhile, the disability community can use this as an example of why movements and initiatives that seem to have nothing to do with disability should always consider the possible disability angles on what they are doing, and get serious about consulting the disability community. That means more than just asking that one disabled guy you happen to know. It means reaching out to several different disability organizations that have the capacity to provide both personal and technical feedback. It also means that those organizations need to be ready to provide that kind of feedback on a moment’s notice, and mobilize in a reasonable but also forceful way to deal with things like the straw ban movement.

That would be great. And some of it might actually be how it turns out in this case, since it seems to me like the disability community is actually being heard on this, or at least having a voice, much faster and in more mainstream venues than I would have guessed just a few weeks ago. The problem is now being covered in “the press,” and not dismissively or as a curiosity.

The problem is that there’s almost nobody out there that I can see, other than a few disability bloggers, freelance writers, and tweeters, offering specific demands or compromise formulas to the environmental movement, municipalities, and companies like Starbucks. The only organized campaign I’m aware of is by Disabled In Action in New York City and the Brooklyn Center for Independence of the Disabled, which were planning to do a rally and press conference at a Starbucks store in the city today, but have at this point postponed because they are having possibly productive dialog with Starbucks management. I hope this bears some fruit.

For myself, I’m going to go to my local Starbucks this afternoon and talk to the manager there about the straw ban, and ask him to pass along to upper management the accessibility problem with banning plastic straws. I invite all my fellow “basic” disabled Starbucks goers to do the same.

Disability Blogger Linkup - July, 2018

Closeup photo of a grey computer keyboard, with a red wheelchair symbol on the center key

Welcome to the Disability Blogger Linkup! If you are new to this, click here to see previous Disability Blogger Link-Ups.

The idea is to share something you have written that's about disability in some way. Please be sure to link to the specific article or post, not just the main page of the website it's on. Also, to make the links easier for visitors to identify, in the “Your name” blank, type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it! If you have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

Note: Please don’t post pieces that are at their core advertising or endorsing a product or service for sale. I have never made this explicit before, but I have been getting a lot of emails from bloggers and website proprietors who may or may not be semi-disguised marketing, wanting to post “guest blogs” to this site. No disrespect to what they are doing, but that’s not the kind of content I want on this site.

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, August 10, 2018.

Analogy

Disability Thought of the Week on a yellow lined notepad background

*Sigh* This started out as a nice, brief analogy. Then it grew to take into account more and more aspects of the disability community and it’s relation to the rest of society. Anyway, here it is. What do you think?

=====

This is the disability community ...

100 people are packed into a leaking rowboat, with the water half an inch away from spilling over into the boat.

1/4 of them are trying to transfer to a couple of newer, safer-looking boats visible nearby.

Another 1/4 are trying to get ashore, which is further away, but it’s where all their friends and family are.

Another 1/4 are trying to get everyone else in the boat to sit still, out of fear the boat will capsize and drown everyone immediately.

The last 1/4 insist there’s nothing wrong with the boat at all that can’t be overcome with hard work and a positive mental attitude.

Ten of the people in the boat keep wondering aloud why another ten are even there, since they clearly don't really belong on the boat.

About 1/3 of everyone in the boat is wearing life vests, so their chosen responses to the situation are sincere, but mainly philosophical and less personally urgent. About half of the life vests actually have holes in them, but the wearers don’t realize it.

All around on the shore are spectators who are either encouraging the people in the boat ... offering sometimes helpful, sometimes contradictory, sometimes obvious advice ... or discussing among themselves which of the people in the boat are inspirational, and which are negative and counterproductive.

A few people are swimming out from the shore to help. Although they all mean well, about half of them will probably drown themselves, taking a boat passenger or two with them.

Monthly Reading List

Monthly Reading List title over a background photo of open books on a table

The best things I found about disability on the internet in June, 2018:

Ban Inaccessibility, Not Plastic Straws
Karin Hitselberger, Rooted In Rights - June 7, 2018

I admit that I am still ambivalent about the straw ban controversy within the disability community. Obviously, disabled people who need plastic straws and can’t use other kinds have an important concern that needs to be taken into account, and is instead either ignored or outright disparaged by straw ban supporters. Yet, I do think that reducing plastic straw usage overall is probably a good idea. That’s why I appreciate this article, which offers a reasonable compromise that I think could end up doing most of what straw bands are intended to do.

On Arrested Development, Disability Is a Joke
Inkoo Kang, Slate.com - June 8, 2018

When I started the Disability.TV podcast, this is the kind of discussion I wanted to have. I discovered that I’m not that good at podcasting … more specifically, not good at speaking off the cuff. It also felt like discussions about TV and movies in disability culture were pretty binary. Or more accurately, singularly focused on identifying ableist offenses and giving out demerits for them. I certainly think TV continues to earn demerits for ableism, and certainly did when Arrested Development came out, but I like how this piece engages the idea that at different times, imperfect representations may be better than none at all, while probably not deserving a permanent pass.

Jesse Thorn Pays Tribute to Ed Roberts, A Pioneering Leader in the Disability Rights Movement
Bullseye With Jesse Thorn - June 4, 2018

I’m a regular listener to Maximum Fun podcasts, which are overseen by Jesse Thorn. And I like Jesse a lot in his role as “Bailiff” for the Judge John Hodgman podcast. I’ve listened to his NPR show Bullseye a few times too, though I’m not a regular. But when Jesse mentioned having talked about Ed Roberts in a recent Bullseye episode, it took me by surprise and I went right to it. What a lovely tribute. Jesse is personal and admiring, but doesn’t forget to explain why Ed Roberts means something to so many people who never met him. This is an essential component of any introduction to the Disability Rights and Independent Living movements.

Please Don't Call My Autistic Son "Buddy."
Susan Senator, Psychology Today - June 14, 2018

One of these days I’m going to make a definitive list of things disabled people think and feel that are really hard to explain to non-disabled people. Condescension is one of them, despite the fact that once it is directed to you, the problem with it is dead obvious. This article explains it pretty well.

Iron Man
Mike Ervin, Smart Ass Cripple - June 19, 2018

I turned 51 this June. I don’t know if I’m qualified for any senior discounts yet, but this piece sure resonated with me regardless.

Disability Thought Of The Week: Toughness & Vulnerability

Icon of a white silhouette head with a word cloud inside containing words associated with disability thinking, against a light blue background

When I was younger and just becoming familiar with disability activism and culture, one of the main ideas we were supposed to convey was that disabled people were tough. We were resilient, adaptive, persistent, low-maintenance, and easy to get along with. This message was deliberate. Disabled people are constantly underestimated and assumed to be weak, fragile, and just plain weird to be around, so it makes some sort of sense to emphasize the opposite qualities.

Now, roughly 30 years later, it feels like we are coming to grips again with vulnerability, not just as a community, but individually. Part of our message now is that we are not superhuman. We are not endlessly adaptable. Our resilience is not bottomless. Our patience and good cheer have limits. We get tired, anxious, depressed, and angry, and sick ... and not "just like" everyone else does, but in ways that are specific to our disabilities.

I appreciate this more balanced view of disability. It certainly fits my own disability experience, which is a combination of real capabilities and real weaknesses. But sometimes I sort of miss the tough, resilient, easygoing image. Because part of our reality is that we are tough, we are resilient, and given the crap we have to deal with every day, we are incredibly patient and damned delightful. Maybe we can be both. Maybe toughness and vulnerability are the true hallmarks of being a disabled person.

"My Scoliosis Story"

X-ray showing a spine curved by Scoliosis, (not mine).

X-ray showing a spine curved by Scoliosis, (not mine).

In January 1977, I had spinal fusion surgery to arrest and correct worsening Scoliosis. I was 10 years old. It was done at the Montreal Children’s Hospital, in Montreal, Quebec, Canada. It was the most serious and complex of the many surgeries I have had in my life to address various aspects of my underlying condition, which is Arthrogryposis. A little over five years ago, I blogged about what I remember from that experience:

Hospital Memories
Disability Thinking - November 7, 2013

I’m thinking about all of this again now because I recently discovered, quite by accident, several YouTube videos documenting Scoliosis surgeries and recoveries. For a few days I was sort of obsessed with them. So far, I’ve watched 8-10 series of videos. These are my two favorites

Julia Carlile // merseygirls

This is the first series I stumbled upon. It turns out Julia is semi-famous in the UK, as a member of “Britain’s Got Talent” competitors “Mersey Girls,” a dance troupe. But I didn’t figure that out until well into her series of videos documenting her scoliosis surgery.

TheScoliosisDiaries

This young woman and her mother are hilarious together, and in the best way. They really don’t seem to be putting on a show, and their attitude seems genuine, with only a very small dose of hipster irony.

The first thing I noticed about these, and the six or so other video series I watched, was that their surgeries and recoveries were much more effective and less arduous than mine were 41 years ago. They were sitting up less than 24 hours after surgery, and walking the next day. None of them were in casts or back braces afterwards. They all got dramatic curvature correction. Julia’s operation even left her spine flexible, so she can continue dancing. It’s just really impressive.

My biggest surprise is that I’m not a bit envious or resentful that their experiences and outcomes seem so much better than mine. Honestly, I’m not. I’ve asked myself several times … “Doesn’t this make you angry?” No. It doesn’t. It’s super interesting to me, but that’s all. I guess that’s good, but it’s also a little weird.

My other takeaway is that I’m reconsidering my feelings about “inspiration porn” and the usefulness of the Medical Model as ways for some disabled people to process their own disabilities.

Some of the “Scoliosis Journey “videos I’ve watched are heavy on inspiration … all about “fighting” Scoliosis, with soundtracks of self-esteem-themed pop songs, and bland platitudes about overcoming and perseverance. But just as many of the videos are more subtle, straightforward, and unsentimental, like the videos embedded above. The people in them talk about their feelings and thoughts in specifics. They present as unique personalities, with distinct points of view, experiencing real things, not players in an overworked narrative. They are also funny, and I find that makes a huge difference.

Granted, there is probably a lot missing from these videos. For instance:

- We see some fear and anxiety, but little hint of real confusion, or any sense of feeling trapped and forced into the procedure. Maybe that’s because they all are really okay with what’s happening, but it’s got to be a pretty common feeling among children and adolescents undergoing this procedure.

- There’s little to no evidence of real conflict or even minor friction with the hospital staff. Again, maybe that’s because everything went swimmingly. But on average, I would say it’s more common for there to be at least some disagreement or personality clashes during a hospital stay, even if it’s just irritation that never becomes serious. I wonder if it would even be possible to continue with this kind of documentation if some kind of dispute emerged. Would the hospital try to shut down filming that looks like it’s going to make them look bad, instead of cheerfully participating as they seem to do in these videos?

- Only one or two of the videos I watched included any hint of viewing Scoliosis as a disability, in the broader, social identity sense. For most of these people, it’s just a medical condition to be taken care of. A few seem to view their documentation as a kind of peer mentoring for other people with Scoliosis, which can be the start of a broader disability consciousness. But for the most part, the people in these videos don’t yet seem to have much of a sense disability identity, good or bad.

And you know what? They seem to be fine anyway. Maybe its a good reminder that while the Social Model and disability identity contribute to a full understanding of disability and addressing correctable injustices in society, they aren’t always necessary for individual disabled people to live a happy life.

As for “inspiration porn,” the key to me is that these really are the patient’s own stories, told from their point of view, even though it’s almost always parents behind the cameras. Even when family and friends appear on camera, they don’t try to make the story all about them. I am also struck by the fact that although these people are clearly approaching Scoliosis from a Medical Model point of view, none of them seem to view themselves as “fighting” Scoliosis, and the sure don’t seem to hate the way they are or feel flawed or ostracized. They’re hopeful of improvement, but not particularly desperate.

The only thing i would like to say to these young people about their experience is that I hope they never feel they have to be cheerful and positive all the time. I’m sure they aren’t always upbeat anyway, but I hope they don’t beat themselves up about it when the pain in their backs, or maybe the funny way people may still look at them, gets them down. Like I said, they seem to be doing just fine without a deep relationship with disability culture or an understanding of the nature of ableism. But it’s one thing to be a positive person. It’s another to think it’s your responsibility to be that way.

These stories are obviously not fully representative of Scoliosis, and certainly not of disability in general. But I think they might be useful examples of how to maintain a healthy mix of the Medical and Social models, and a healthy balance between sentimentality and practicality when telling your disability story … to others and even to yourself.