Election Blogging

I haven’t blogged much about the election so far ... not here at Disability Thinking anyway. That’s because I’m reserving most of my thoughts on politics for the Center for Disability Rights, which is paying me to blog about the election, and for my #CripTheVote activities. That means that actually, I’ve written quite a lot about the elections, especially in relation to disabled voters and disability issues.

If you want to read what I’m thinking about the U.S. elections, check out #CripTheVote, on Twitter, the #CripTheVote Facebook Page, my own Twitter feed, embedded on the right rail of this blog, and also read my CDR blog posts, listed here in reverse chronological order:

Top 5 Disability Issues
(Paired with this blog post by Emily Munson Five Modest Proposals)

Nothing But Questions

Undecided: 9th Democratic Presidential Debate

Now Let's Hear From The Rest Of Them

A Bit Of Republican Tone Policing: 12th Republican Presidential Debate

Deepish Thoughts From A Contentious Debate: 8th Democratic Presidential Debate

Just Stop It: 7th Democratic Presidential Debate

Moderators Please! Ask A Disability Question!: 11th Republican Presidential Debate

I Guess We're On Our Own - 10th Republican Debate

No Time For Disability - 9th Republican Debate

It's Time To Do Better - 6th Democratic Debate

The 8th Republican Debate

Bad Conflict, Good Conflict - 5th Democratic Debate

A Real Disability Issue, But Is Anyone Listening? - 7th Republican Debate

Shoot For The Moon, Or Play It Safe - 4th Democratic Debate

Blowing On Sparks - 6th Republican Debate

Passing A Low Bar: Hillary Clinton Answers a Disability Question

The Full Plate and The Missing Topic - 3rd Democratic Debate

Safety At All Costs - 5th Republican Debate

Mocking Trump

Disappointing, But Not A Waste Of Time - 2nd Democratic Debate

It’s Up To Us - The 4th Republican Debate

And How Will That Work For Disabled People? The 3rd Republican Debate

Thinking Today: Disability, Working, and Risk

I read this tweet from the UK yesterday:

Poverty is hard, time consuming work, and being poor does not make one more attractive to employers. Employers usually prefer to hire people with stable, secure personal lives, including stable finances. Hiring a poor person or someone teetering on the edge of poverty is risky for employers, even before taking disability into account.

For most disabled people themselves, work itself is risky. There are tremendous benefits to be had from work, both emotional and material, but it's risky. You risk failure. You risk upsetting the balance of your health, either physical, or emotional, or both. Even if you plan and calculate meticulously, you risk finding yourself worse off financially than before you tried to work. You risk finding out there really are hard limits on what you can do with the body and mind that you have. You risk confusing people about whether you are, in fact, “disabled” and what that actually means.

That's another reason disability-related benefits like Social Security Disability and SSI shouldn't be viewed as something people get because they can't work, but rather as a secure base on which to build or rebuild a life of work. Benefits should back up your effort to work, not disappear as soon as you achieve stable, satisfying employment.

This should all be common sense. It’s not though, and that’s one of the persistent barriers to employment for people with disabilities. It also complicates most efforts to “reform” disability-related benefits.

Weekly Reading List

This week's reading recommendations:

The Ethics Of Hodor
Spencer Kornhaber, The Atlantic - May 27, 2016

I was ambivalent about the meaning of Hodor pretty much all along. So I am happy to see this discussion that recognizes the many shades of meaning and contradictory interpretations available to understand this "Game Of Thrones" character, who is both mocked and beloved, often simultaneously. I have to admit though, since I mostly lost interest in Bran after the first season, I hadn't realized what an "abusive little shit" he is to Hodor. Like so many themes and tropes of disability in pop culture, once you see it, you can't unsee it. If you'd like to hear more about disability on "Game Of Thrones," listen to these Disability.TV Podcasts with me and Alice Wong: [Game Of Thrones 1] [Game Of Thrones 2] [Tyrion Lannister's Prison Conversations].

Adolph Hitler had a disabled younger brother, Austrian historian claims
Matt Payton, Independent - June 6, 2016

I'm not sure what to make of this. I'm certainly not equipped to vouch for the claim, or to refute it for that matter. I only have a few thoughts. Most non-disabled people will have a close relationship at some point in their lives with someone who has a disability, and peoples' response to direct contact with disabled people can go in several radically different directions. Knowing someone with a disability certainly does not guarantee understanding or dismantle ableism. In fact, it can sometimes make it worse. And this can happen with anybody. You don't need to be a depraved dictator like Hitler. After all, he could not have killed 70,000 disabled Germans and Austrians all by himself or purely through his own personal will. There was a constituency for such an approach to disability, and in a somewhat more muted and masked way, there still is ... and not just in Germany.
 
How's this for a transition? From genocide to disabled parking fraud ...

State auditor digs into questions of disabled placard abuse
Tony Bizjack, Sacramento Bee - June, 2016

I'm not sure why the social norms of disabled parking fascinate and frustrate me so much. It has something to do with upside down priorities. It seems like non disabled people, and many disabled people too, get more exercised by the slightest suspicion of someone undeserving parking in a "handicapped spot" than they do over disability issues of life, death, and basic independence. Maybe the better way to look at it is that the proper use and enforcement of disabled parking is a common entry point into disability activism. It involves, or seems to involve, clear rights and wrongs, and is personalized rather than "systemic." It's easier and more satisfying to get angry at "that guy" who parked illegally, (one assumes, often without proof or real insight), in a disabled parking spot ... much easier and more fun than taking action against diffuse and entrenched bureaucracies or "institutionalized do ableism." I'm not saying disabled parking isn't important. I just think it generates more (self) righteous outrage than it really deserves.

Unpaid, stressed, and confused: patients are the health care system's free labor
Sarah Kliff, Vox.com - June 1, 2016

Millions of disabled Americans could probably be justified in responding to this article with a hearty, "No shit Sherlock!" Most of us know full well that it's "on us" to make sure our medical care works the way it's supposed to. But it's useful to get this insight from a more mainstream, not disability centered point of view, and Sarah Kliff is an excellent health care journalist. On the other hand, I'm sure I'm not the only disabled person who would be at least a little hesitant to turn management of my health care over to some third party. Managing your own services is a hassle, and certainly tantamount to a part time or even full time job ... but autonomy is precious when you have disabilities, and I'm not sure how much of that I would be willing to delegate to a "case manager."

Labor and Disability Rights: A Chicken and Egg Problem
Ari Ne'eman, Sometimes A Lion - May 25, 2016

Ari expertly dissects at least part of the seemingly unavoidable conflict between disabled users of home care and home care providers. Recent U.S. Labor Department changes have theoretically offered the possibility of overtime pay for home care workers, but it will only work in practice of states agree to pay out those overtime wages by increasing their Medicaid funding. If they don't, workers will just have to stick to 40 hours or less per week. They will get paid less, and the disabled people they work for will risk losing their independence and health due to reduced hours of care. It is a true dilemma, with no real bad guys, except maybe for states that refuse to increase their funding knowing full well it will mess up the lives of both workers and disabled people. It's the kind of policy issue that absolutely begs for careful, dispassionate, (but not unfeeling), analysis, and Ari Ne'man is very good at that.

Disability Blogger Link-Up

It’s that time again … for another Disability Blogger Link-Up!

If you’re new here, the idea is to collect lots of really good, interesting pieces of writing on disability topics, for the most part by people with disabilities. I post a linkup every other weekend, and each runs from late morning on Friday and closes at Midnight on Sunday. Once a linkup is closed, you can’t post to it anymore, but the links all stay active, essentially forever. If you miss one linkup, there will be a new one in a couple of weeks.

If you like, browse all the past Disability Blogger Link-Ups, here.

As always, to make the links easier for visitors to browse, in the “Your name” blank, please 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!

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, June 17, 2016.

Throwback Thursday

Three years ago in Disability Thinking: Quote / Unquote

It’s hard to believe now that only three years ago, it was a revelation to me that well-meaning people say stupid things about disability that they assume are really insightful, and that most people agree. That’s why I keep doing Throwback Thursday. It’s important to remember what it’s like to think about disability before you understand key things about it. I really think that a lot of the conflicts we have within the disability community … what to call what to call ourselves, what is and isn’t ableism, whether disability is an identity to embrace or just an inconvenience … boil down to people being at different points on their personal timelines of disability understanding.

Two years ago in Disability Thinking: The AV Club Looks At Intellectual Disability Portrayals

Speaking about perspectives evolving over the course of my disability thinking timeline … I still think that the line between realistic and offensive portrayals of disabilities isn’t as bright or as sharp as we tend to think. But at this point I’m pretty much convinced that non-disabled actors should not portray disabled characters, which means of course that disabled characters should only be portrayed by disabled actors. If that makes movie producers’ lives more difficult, and prestige actors’ careers slightly less interesting, well, things are tough all over. I’m not prepared to say never, but I would suggest starting with a ten or fifteen year moratorium. Cast only disabled actors for disability roles during that time, and at the end, let’s see where we are. Under a new normal, it might be okay for a non-disabled character to try a disability role, as an exception. Now it’s the rule, and it doesn’t even work very well.

One year ago in Disability Thinking: On Social Security Reform

I am surprised at how little Social Security Disability programs have come up in the election so far. Maybe that’s because a lot of the heat and panic have drained away from the debt and deficit issue. The deficit isn’t as bad right now, and besides, I think a lot more people realize that in the last 20 years or so, the federal debt hasn’t really been that harmful. It’s mostly a philosophical or partisan political issue. Still, that weird situation still exists, where two different groups with vastly different agendas both want to “reform” Social Security. Deficit hawks and disability activists both want the system to change, but they have completely different concepts of how it should be and what the goals of reform actually are. There may be some legitimate overlap between the two approaches, but right now each side barely knows the other exists. I think that’s a dangerous environment in which to talk about Social Security “reform.”

“Mom & Pop” Accessibility

Ever since I can remember, growing up in the small city where I live, my family has used the same pharmacy. It’s a small, independent, “mom & pop” pharmacy located in a mostly residential neighborhood, rather than in the downtown business district, or the fast food / strip mall area just outside the city limits.

I clearly remember being an eight year old kid, going to Condo Pharmacy with my Mom and Dad, and climbing up the 2 or 3 steps to get into this rather cramp, jam-packed little business that occupied basically a converted house. I don’t remember the inaccessibility being perceived as a problem, but I do remember that going up those steps was a rather difficult thing that we might remark on … not as an injustice really, but more of a little challenge for a somewhat physically disabled kid like myself. Looking back, I’m sure Condo’s had lots of regular customers who found the steps a hassle. I mean, in addition to prescriptions and over-the-counter meds, they did a medium amount of business in home medical supplies … grab bars, raised toilet seats, walkers and the like. For a business like that to be inaccessible didn't make much sense, even in the 1970s and '80s.

At some point in the 1990s ... definitely after the ADA passed in 1990 ... Condo’s moved. Actually they built a new building right next door. The new place was bigger, roomier, with a small parking lot adjacent, no steps to get in, and automatic doors. It's still there, and most people around here still think of the place as Condo’s “new place.” The photo above is the "new place."

Condo's is still my pharmacy. Part of the reason is that it’s easier to get to now than even the chain pharmacies outside the city … like Wall-Mart, Rite Aide, and Kinneys. They are also fully accessible, but are a bit of a hassle and a bother anyway because of relative distance, traffic, and overall busyness.

I’m only writing about this because in a way, this is how accessibility is supposed to work for small businesses. It’s how we argue that it’s worth it for them to improve accessibility. I don’t know how much of Condo’s motivation for moving and building was accessibility, but I suspect it played a role. And I don’t know how the business is doing compared to the big chain pharmacies, but all evidence suggests they’re doing fine. I mean, they’re still here, and for small, local businesses that’s an accomplishment all by itself.

I think their improved accessibility must have played some role in their continued survival, if not success. There’s maybe a lesson there somewhere.

Weekly Reading List: "Me Before You" Edition

Two rows of multicolored books

Book Review: Me Before You by Jojo Moyes
Tonia Says - November 30, 2015

Hollywood Promotes The Idea That It’s Better To Be Dead Than Disabled
Dominick Evans - February 11, 2016

Why Are You Complaining? Some People Actually Feel That Way: A Critique of Me Before You
Kim Sauder, Crippledscholar - May 21, 2016

Spare me, “Me Before You”: Hollywood’s new tearjerker is built on tired and damaging disability stereotypes
Emily Ladau, Salon.com - May 24, 2016

Why I Blocked All Advertisements for “Me Before You”
Karin Hitselberger, Claiming Crip - May 27

Die, ableist tropes, die! #MeBeforeAbleism #MeBeforeFuckYou
Alice Wong, Storify - May 29, 2016

*** Spoilers Ahead ***

Except for a few Facebook reposts and Twitter retweets, I haven’t written anything about “Me Before You” until now for a two reasons. First, I haven’t read the book and I haven’t seen the film. It hasn't even premiered yet. Second, It seemed like my colleagues in the disability culture and activism communities had it pretty well covered. I didn’t think I had anything new to add.

It’s been awhile now though, and after reading some great and thoughtful pieces about "Me Before You," I now have a few thoughts of my own to add:

- I feel a bit out of line criticizing a story for not being a different story. I prefer to criticize books and movies on their own terms. It feels sort of like changing the subject to want to rewrite the plot of someone else's work. Still, there are a dozen ways to tell basically this story same story without loading it quite so heavily with disgusting ableism, and certainly without Will killing himself in the end. For example, Will could decide instead to live happily ever after with his caretaker Louisa, using his money to pay for the support and assistance he needs and have a great, liberated life traveling with her. Meanwhile, Lou would still “live boldly.” She’d just live boldly with Will. What’s wrong with that?

- There is a somewhat pro-assisted suicide position held by some disabled people, focused narrowly on the importance of choice. In her blog post linked above, Tonia of “Tonia Says” articulates, (though doesn't quite endorse), a version of this when she says she appreciates that Will made a personal choice to die, which she feels is understandable since pretty much everyone around him treats him like an object with no agency. However, this is also one of the key reasons why the current lionization of assisted suicide is so galling. Disabled people are, by and large, starved for choices in all areas of life. So, why do so many people focus, on granting disabled people the one choice that forecloses all other choices? If Will had chosen not to kill himself, wouldn't that have been a choice, too?

- I don’t think for a minute that the author, Jojo Moyes, set out to anger and upset disabled people. That’s just one of the unique, delightful wrinkles of ableism … nobody ever means it.

- I think it’s just barely possible that the author, Jojo Moyes, wanted Will to be a sort of villain … a nice man we grow to care about, who has massive character flaws, (pointless shame, self-hatred, self-pity, take your pick), that in the end we condemn because they lead to a completely unnecessary downfall for him at the end. Maybe she doesn’t mean Will to be heroic after all, but rather a deeply messed up, narcissist who should have gotten psychological help and maybe some peer counseling to adjust to his disability, so he could use the many tools freely available to him, (wealth, education, good looks, a woman who loves him), to live a rich and fulfilling life … but was instead indulged and allowed to kill himself while imagining himself to be noble for doing it. Maybe she wanted readers to question assisted suicide and think critically about why some disabled people spend the rest of their lives thinking you’re an embarrassment and a burden.

- But, if that’s her deeper message here, then she buried it far too deep to be detected by most readers of her book and viewers of her movie. If that’s what’s happened, it’s a huge literary blunder, most likely brought about by a near total ignorance of both the common tropes of disability storytelling and the current chic for romanticizing assisted suicide. Actually, I don’t think that was her intention. I don’t think she has a hidden message there that we’d approve of. I suspect Moyes means what she says.

- I also assume that she isn’t an intentionally edgy, avant-garde sort of artist who wants to upset people with a shocking conclusion to a story “ripped from the headlines” of a currently hot social issue. No, I think she wanted and expected her readers to be happy to read her book (and maybe see the movie!) Obviously she intended us to feel sad at the end, but sad in that happy, satisfying, cathartic way, not sad in the smash things and rethink your views on disability and suicide sort of way. I would really like to know what the author thought about disabled people as a group in relation to her novel. Did she a) think we’d love it for it’s unflinching portrayal of the difficulties of disability, b) imagine we’d be excited to appear in any work of popular fiction (and maybe a movie!), or c) did she just not think at all about disabled people as a distinct audience with a point of view?

- If, on the other hand, I’ve got her all wrong and she truly set out to provoke anger and controversy, then fair enough I guess, and, you know, Mission Accomplished.

- You can write a novel or make a film that realistically portrays gritty, frightening realities without endorsing them. "Transporting" in a way romanticized another social ill … heroin addiction. But even that film was ultimately quite clear about the fact that heroin addiction isn’t good. People do it, for reasons they think make sense at the time, but it’s bad, even within the confines of the story. It’s to be avoided and prevented. "Me Before You" forgets to deliver a similar message, or else Moyes actually believes it’s noble for quadriplegics to kill themselves. Either way, not good.

- As someone pointed out in an article I can’t find at the moment, there are thousands of real people right now who are newly experiencing significant disability and trying to figure out what their lives mean. The way people’s minds work, I’ll bet a lot of them have friends and family encouraging them to see “Me Before You” or read the book, figuring it will be good for them to see or read about a relatable guy in a wheelchair. The way the story goes, however, it could quite literally make newly disabled people suicidal. That’s a problem that can’t just be shrugged off or justified as a thoughtful examination of an abstract issue of medical ethics.

- There’s also the scarcity problem. Writers are free to tell whatever story they want. However, disability stories are rare in popular culture, so each choice carries extra weight. Choosing to tell a disability story that ends in suicide, possibly a romanticized one, makes a cultural argument, whether or not the author intends it or even realizes it. And when she have this one rare chance to say something to a mass audience about disability, it’s just plain harmful to tell stories that reinforce peoples’ worst beliefs about disability. She could have said something positive and insightful, but she chose to say something ugly and harmful in a way that makes viewers feel good about it. Again, not good.

I’ll probably see the film sooner or later, if only to see how closely the criticisms line up with the actual product. As I said on my Facebook page a few days ago, I’m not going to ask my friends and family to boycott the film or the book. I’d just like them to take these concerns seriously and question the very questionable premises on which they are based. They should also know that while not every disabled person is going to be automatically offended, there are good, solid reasons to be. You really don't have to dig deep to find things that offend. They're right there on the surface and in every layer below.

For what it's worth, the film's Metacritic score at the moment, with six critic reviews, is 49. That's pretty low for a movie that's basically designed in a lab to be a hit. I'm cautiously encouraged by this quote from Charles Gant from "Screen International":

"Resistance to this delirious romantic tragedy is futile, save for that nagging voice in our head wondering if it really has to be this way."

Exactly.

Note: Cara Liebowitz (@spazgirl11) is live tweeting her reading of "Me Before You," under the hashtag, #carahatereads. It's pretty great.

Blogging Break

I am taking short blogging break. The next post will be on Monday, with the usual Weekly Reading List.

In the meantime, if you want to read more about disability life, culture, ideas, and activism, try browsing the 1,043 articles by other disability bloggers contained in the 38 Disability Blogger Linkups hostedhere at Disability Thinking so far. I won't guarantee it, but I'm pretty sure there are no duplicates. That's a lot of writing from a community of people that is often mistakenly seen as silent, voiceless, and without a discernible point of view.

Click here to see all of the linkups

#DisabledPeopleProblems

I just did a Twitter search for #DisabledPeopleProblems, because I wondered if anyone had made use of the hashtag to highlight the smaller problems and dilemmas that only disabled people have to deal with. I found a few tweets, but not as many as I thought I would.

I’m not talking about the big issues, like accessibility, discrimination, and messed up service systems … but rather the sorta hard, kinda annoying little things we deal with every day that don’t rise to the level of injustice, but which stick in our craw anyway.

For example, this afternoon I went shopping. My list was medium sized. That meant I had to decide whether to go the the big, full-service supermarket that’s got good parking, and always has plenty of mobility carts available, but is also usually crowded and hard to navigate? Or, do I go to my neighborhood, second-rate grocery store that only has one mobility cart, (that I don't care to risk riding on), but does have smaller shopping carts that are easier to push, and the store itself is both smaller and less crowded? On the other hand, it’s not very nice, and there’s usually at least one thing on my list that I find they don’t have. Which means another shopping trip.

As I said, these are not terrible problems. Most of the time, I can afford whatever is on my shopping list without having to completely rework my monthly budget, or dropping items off the list purely because of cost. I drive and have a car, so I don’t have to worry about adhering to someone else’s schedule … whether a friend or, say, a paratransit bus. I can get my groceries from my car to my kitchen, usually in just two trips, though to be honest, for me that is by far the hardest part of shopping. Things could be a lot worse, and for many disabled people, they are.

Yet, these are my little dilemmas, which I only really have to deal with because of my particular kinds of disabilities. I’m not complaining or comparing. I just think it’s interesting to explore the second or third-tier problems we deal with as moderately disabled people. And thinking of them as a variation of #WhitePeopleProblems helps, because that phrase carries with it a similar kind of ironic awareness about just how relative “problems” can be, depending on where you find yourself in society and identity.

What are your #DisabledPeopleProblems?