Friday, October 4, 2013
The Misery Calculator, Patent Pending
You know how in the film, "Dead Poet's Society", the stodgy, old-fashioned headmaster uses numerical ratings and graphs to teach his students how to "appreciate" poetry? In the movie, that's supposed to dramatize how regimented and soulless the school is before Robin Wiliams' Mr. Keating arrives, but I always thought that graphic system got a bad rap. As long as it is just one of several ways you use to experience a poem, I don't see any harm in it, and it could even reveal things you might miss with a more holistic, emotional approach.
Maybe we can use a similar approach to understand better how we are doing on any given day, or in general, regarding our disabilities. I figure what we need is some kind of spreadsheet that would amount to a calculator where we enter a 1-10 number of each of, say, 10 quality measures … with 1 being the lowest level of difficulty or suffering, and 10 the highest. Then we get the thing to draw us a chart so we can see not only the amount of awfulness we are experiencing, but what kind. You know that "spoons" is going to be one of the measures, and I'm thinking of dividing the ten measures up into 5 that are purely personal or "Medical Model", and 5 that are external or "Social Model". That would allow us to see what percentage of our total misery really is due to social barriers and breakdowns, prejudice and ableism … and how much is, in fact, about our physical or mental impairments.
So, I set up a spreadsheet, plugged in number ratings for myself, and here are my results:
This seems about right. For myself specifically, my physical, medical impairments are a somewhat bigger factor in my life than "Social Model" pressures, although they are unmistakably there, too. But I don't use a wheelchair, so accessibility is going to be less of a factor. I have a car. My life at present doesn't involve a whole lot of interaction with the public, and I don't depend much on bureaucracies. My biggest disability-related thing is my lung condition. If I miss out on something or feel incapacitated, it's usually because I'm not breathing very well and don't have enough energy or endurance.
This is my first shot at something like this. I'd appreciate any suggestions to make this more meaningful … a different rating system, different categories, etc. What would your "Misery Calculator" results look like?
=================================
Raw data from charts:
| Pain |
3
|
| Stamina / “Spoons” |
7
|
| Functionality |
4
|
| Mental & Cognitive |
1
|
| Sensory |
1
|
| Physical Barriers |
2
|
| Screwups |
1
|
| Systemic Barriers |
2
|
| Tools & Resources |
3
|
| Prejudice / Ableism |
4
|
| Medical |
16 (57%)
|
| Social |
12 (43%)
|
The Michael J. Fox Show - S1, E3 "Art"
On the plus side, Mike's impairments played no substantive role in any of the stories or scenes, while still being noticeable. The only time in the whole episode I laughed was at the single direct Parkinson's joke, but that was mainly a nicely-delivered one-liner. Mike throws a napkin at his son, Ian, who is texting at the dinner table:
"If that was Parkinson's, we're cool. If not, what the hell Dad?"
Otherwise, Mike Henry's Parkinson's is just there in Mike Henry's body language and voice. Neither of which are distracting, but I don't "forget" about them, either.
Over time, this approach, with an occasional Parkinson's-centered plot thrown in, can really help "normalize", de-mystify, and de-romanticize this kind of disability. The show has to be funny though to survive, and it's got to make sense, both of which it mostly failed to do this week.
Thursday, October 3, 2013
Accessibility Reporting Sites ... What Are We Waiting For?
I thought they were a great idea, and resolved to do my part to add accessibility reviews of as many places in my local area as I could. I then promptly forgot all about it, and checking the two sites I have bookmarked, I see that as far as I can tell, the only reviews of my area are the three I added originally.
So, I'm just reminding myself to get going and add more reviews. And if you are reading this, and are interested in advocating for more accessibility, you should, too. In fact, I'd go as far as saying that if you ever complain about poor accessibility, the weakness of the ADA, or the willful ignorance of business owners who still claim to not know where to start, then you really must contribute to one or both of these sites. As the saying goes, it's not sufficient, but it is necessary. And it's easy.
Click the links to get to the websites, where you can create a free account and start entering your reviews:
Ironside - First Impressions
Sigh. The gulf in "Ironside" between the quality of the disability stuff and the quality of the show overall is even wider than it is in "The Michael J. Fox Show". "Ironside's" pilot episode contains some beautiful, even revolutionary scenes about the main character's disability. There are also a few decent disability quips and one-liners. The show looks great, too. Unfortunately, the storytelling is sloppy and patchy, and the dialog is, at times, awful, to the point of being unintentionally funny. There are several ways "Ironside" can improve, and capitalize on what the show gets right about disability, so I'm not giving up hope yet. I really want to like "Ironside", but it's going to be a struggle. I'll post a full review this weekend. In the meantime, you can watch "Ironside" on Hulu Plus.Wednesday, October 2, 2013
Photo Of The Day
In honor of tonight's premier of "Ironside":
Reblog from Wheelchairproblems Tumblr blog ... Originally from The Smithian Tumblr blog. I love with Wheelchairproblems says:
"This show looks good and even if it sucks I’ll probably think it’s good cuz wheelchair."====================
Bonus photo:
The original "Ironside":
Nursing Homes vs. Home Care, Explained by ... Al Jazeera?
Young, disabled and stuck in a nursing home for the elderly
Ashley Cleek, Al Jazeera America - October 2, 2013
This is the best, most thorough news story about Medicaid, nursing homes, and home care that I've ever seen. The only real problem with it is that it could lead people to think the problem is unique to Alabama. It's not. Every state has a different ratio of Medicaid spending for nursing homes vs. home care. Some are are better, some are worse. A few states are really ahead of the curve. A few are far behind. But, it's a problem nation-wide.
Activist and disability policy wonk Steve Gold has some comparison data. It's a few years old now, and the presentation isn't very pretty, but it illustrates the point pretty well. If, in fact, nursing home care and home are are such fundamentally different services … are "apples and oranges" … then how do states manage to have such radical different allocation ratios between the two? Peoples' needs aren't that different, and none of these states have massive die-offs of elderly and disabled people. Some states just manage to do as well or better with home-based services, while others are either scared to, or are in the pockets of nursing home companies, or both.
I would also add that it isn't just "young people" who want … who need ... to get out of nursing homes. Almost nobody should be in a nursing home, and 95 year olds can benefit from home care as well as 35 year olds.
As a side note, if this is typical of the quality of journalism Al Jazeera offers on domestic topics, then I really hope they make a go of it here in the US.
Tuesday, October 1, 2013
ADAPT Actions in DC
Yesterday, Monday, September 30th - House Speaker John Boehner's Office
Today, Tuesday, October 1st - The White House
The end of the second article notes that these actions might be poorly timed, as the big budget / shutdown showdown, and the rollout of Obamacare, might overshadow the protests. I think that one of ADAPT's great virtues is that it's message stays remarkably consistent, no matter what's happening, year in, year out, because the goals of people with disabilities stay pretty much the same, year in, year out. ADPAT keeps up with daily and hourly changes in legislation, and is very capable of making deals and compromises. But, their main goals, principles, and strategies don't change, regardless of the year, decade, administration, or party in charge.
The best way to follow ADAPT actions is with Twitter … @NationalADAPT.
My Obamacare Experience, Part 1
"Attention:
Due to overwhelming interest in the NY State of Health - including 2 million visits in the first 2 hours of the site launch - the health exchange is currently having log in issues. We encourage users who are unable to log in to come back to the site later when these issues will be resolved."
… And when I click the big, prominent "GET STARTED" button, I get a raggedy error message.
There's plenty of time left in the open enrollment period so I'm not worried about the website's glitches. I won't get mad about it unless it's still like this in a few days. Actually, I'm hoping that maybe trying it out after 10 PM or so might do the trick.
Right now I am paying out of pocket for extended heath insurance through my former employer, so I'm actually not sure what new options I'll have under Obamacare (The Affordable Care Act). Maybe it'll just say "You're good, come back next year." Sooner or later though, it's going to be important, and I'd like to know my options as soon as possible.
By the way, my brother and his family live in Vermont. Just for fun, I tried Vermont's Health Benefit Exchange website, and it seems to be working fine. Of course, Vermont has like 12 citizens … 20 during ski season … so it's easier for their website to handle the strain.
Here are two very good Obamacare explainers …
• The other a flowchart, if you're into that sort of thing.
I plan on blogging about my experiences with Obamacare for as long as my initial inquiries and ... possibly ... enrollments happen. I should also disclose out that I strongly supported health care reform, and although I'd prefer something like a Canadian-model single-payer system, I do believe the Affordable Care Act will turn out to be a vast improvement, if not for me, then for millions of others and for all of us in the long run. In other words, for the time being at least, I am PRO Obamacare.
No matter where you live in the U. S., if you want to know where you stand, start here: HealthCare.gov.
Monday, September 30, 2013
Flynn's Moment
Anna Mae Duane, Salon.com, September 29, 2013
I read this Salon.com piece, which lays out an interesting case that Walter White, the mild-mannered teacher turned murderous meth kingpin in "Breaking Bad", lacked his son's understanding and acceptance of the body's imperfections, and I thought, "Um, okay. I guess." I thought the article was going to be all about Flynn's long … very, very long … delayed moment of empowerment, in the next to last episode of "Breaking Bad". It was certainly a moment I feel like I appreciated in a different way than probably most viewers.
Flynn was the "real hero" of "Breaking Bad" because after sixty-some episodes during which he was literally the last one to know about the crucial thing happening in his family, he took less than a minute after having it all laid bare to choose the right side and physically throw himself between his mother and his knife-wielding father. Sprawled awkwardly over her, his Canadian crutches every which way, but with his powerful eyes never leaving his attacker, Flynn got out his cell phone and, still facing the point of Dad's knife, called the cops.
A couple of times after that, in a less violent but no less powerful way, Flynn similarly cut to the chase with Walt. Flynn was arguably the one who delivered the final blow to Walt's house of cards, thoroughly rejecting his eleventeenth attempt to rationalize his way back into the family's favor, and asking, with rage and strength in his shaky CP voice, "Why are you still alive? Why won't you just die already? Just die!"
Those brief but pivotal scenes had to have been one hell of a payoff for actor R. J. Mitte, who spent pretty much the whole series being clueless, immature, and breakfast-obsessed, while his family went to hell. He had a few moments early on when we saw hints that Flynn might be the voice of reason … when his father Walt considered not treating his cancer, and when Uncle Hank was all pissy about being crippled from his gunshot wounds. But those moments came and went pretty quickly. The rest of the time it was all about what a "bitch" his Mom was being to his poor, misunderstood Dad, which awesome car Walt would buy him, and whether to have eggs or pancakes. He seemed, for much of the series, like a wasted character … a wasted disabled character to boot, played by a disabled actor.
But Vince Gilligan and Mitte made up for it all in the end. I'm biased, of course, and I tend to see disability themes where the probably weren't intended. I don't buy into the author's intent theory though. I didn't have to think and dig and parse and interpret to see a very personal empowerment in Flynn's almost-final scenes. I felt it instantly, like a hit of blue meth.
Flynn rose to the occasion, as just about nobody else on the show ever did, fueled by his sense of right and wrong, and maybe by a bit by rage that for so long, everyone thought he needed to be protected. It felt like there was an almost private, inside theme there, shared with everyone of us who grew up with disabilities, always in the position of being protected and cared for, and often underestimated at the same time. Finally, Flynn got to call bullshit on what was bullshit, and protect his mom and baby sister for a change.
I felt proud of him, and to me, his confrontation, and later his telephone dismissal of Walt, were highlights of the series.
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