Wednesday, March 4, 2015

The Politics and Policy of Home Care

The word Advocacy on a page being highlighted by a green highlighter pen
Jane Hash, The Mobility Resource - February 28, 2015

Im sure there are all kinds of quasi-budgetary, quasi-reform proposals currently meddling with generally functional home care systems in other states. Im blogging on whats happening in Ohio for two reasons.

One, Ive been reading Tweets about home care in Ohio for months now, maybe a year. Two, this is the first full explanation of the issues I have seen so far. Three, its written by Jane Hash, who I met virtually when she discussed American Horror Story: Freak Show with me on my Disability.TV podcast.

It still amazes me that there arent more Republican politicians who buy into consumer-directed models of home care. Its less bureaucratic, it relies on lots of individual responsibility, and, more cynically, consumer direction has an uneasy relationship with unionized nursing. It shouldn’t, but it does.

Of course, the sticking point is that it involves taxpayer money, comparatively large amounts of it, essentially being given, directly or indirectly, to low-income severely disabled people to manage home care for themselves. Personal responsibility may be a cherished value of conservatism, but giving poor people lots of money and services is definitely not.

I am curious about the issue of the alternative program mentioned, which would, apparently, make consumers the employer of record. In one sense, this sounds like a reaffirmation of consumer control. On the other hand, it makes it an all-or-nothing proposition … either you take ALL responsibility on yourself, or you give up all of it to a home care agency.

In New York State, where I live, consumer-directed home care typically involves non-profit agencies that act as “fiscal intermediary”. They don’t decide who to hire and fire, and they don’t train the workers. The consumers do that. But the agencies pay the taxes, cut the paychecks, and even provide decent health insurance to the workers, still at a lower cost and slightly better pay to the workers.

All of this aside, it seems like a bad idea to shake things up too often, even if its to implement possibly good ideas. Home care is an extremely delicate, intimate thing. If youre able to find the right workers and create a healthy, functional system for your care, you don’t need loads of bright ideas imposed on you whenever its budget time again.

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Tuesday, March 3, 2015

A Bit Of Word Wonkery

Scrabble tiles in a rack spelling "WORDS"
He is disabled, but ... (something positive).

He is disabled, and ... (something positive).

Both are ways that people say and write nice things about disabled people, but it makes a huge difference whether they use but or and."

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Followup: 2015 Day Of Mourning

Alice Wong, Disability Visibility Project - March 3, 2015

This address by Alice Wong, at one of Sundays Day Of Mourning 2015 events, is heartbreaking and empowering all at the same time. Its always tricky to imply, “My life is pretty great so yours can be, too,” but we’re talking about life and death here. Those three kids weren’t allowed to even try.

I still dont have much appetite for punishment. But the contrast between what life with even the most severe disabilities can be, and how hopeless these killers and the news media just assume it is, shows just how far apart and confused we still are about the nature of disability. Its a vital reminder to the disability community that disability awareness, so easily trivialized, really is important. Somehow, weve got to penetrate the brick wall between people with disabilities who are happy and glad to be here, and the parents, professionals, and news media who think disability equals suffering and hopelessness.

Lives literally depend on it.

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Monday, March 2, 2015

Old Timey People

Word cloud around the large print word "History"
Were the old days really as terrible for disabled people as we tend to think? Were people back then just grossly ignorant and callous about disability? Or, is that an assumption we make, or a useful conceit to help people today feel superior?

If you go back far enough in history, Im sure you can find eras where most people really did think you could catch" cognitive impairment, that a club foot was a punishment for the sins of great-grandparents, or that blind people were psychic. But we tend to talk about more recent history as if only 2 or 3 generations ago, people's beliefs about disability were universally medieval, and that’s why we had asylums, forced sterilization, and ugly laws.

I think that maybe institutions, laws, and taboos were a lot more terrible than they are today. I’m not sure people were that much worse though. As with slavery, there must have been non-trivial percentages of people in, say, the 1910s who didn’t buy disgusting ideas about disability any more than we do today. If that’s true, it seems unfair to forget about them. On the other hand, one wonders, then, why more people didn’t object when the rest of society was treating disabled people like crap.

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Sunday, March 1, 2015

2015 Day Of Mourning

Day of mourning 2015: Remembering People with Disabilities Murdered by Caregivers
I can't speak for the organizers, but it seems to me that what this event isn't about is as important as what it is:

It isn't about saying that caregivers who kill are monsters.

It isn't about demonizing "special needs parents".

It isn't primarily about punishing the killers more harshly.

It is about accountability for crimes.

It is about ending a double standard ... acquittals and lighter sentences when the victims are disabled.

It is about changing the media narrative that reverses the roles of victim and victimizer.

It is about fighting the popular perception that caring for disabled people is some kind of hell.

It is about remembering the people we've lost, who are too often forgotten.

Please take part however you can, and well all remember together.

Autistic Self-Advocacy Network

Savannah Nicole Logsdon-Breakstone

Autistic Self-Advocacy Network

David Perry, How Did We Get Into This Mess? - February 28, 2015

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Weekly Wrap-Up

Illustration of a calendar with a red pin in it
Monday, February 23, 2015
Tuesday, February 24, 2015
Wednesday, February 25, 2015
Thursday, February 26, 2015
Friday, February 27, 2015
Saturday, February 28, 2015

Saturday, February 28, 2015

Is Cross-Examination The Answer?

Sign with blue background and white print, reading Accessible and Service Animals Permitted, with wheelchair symbol
Tulsa’s Channel 8, ABC - February 27, 2015

Im ambivalent about this kind of news story. It is true that people who knowingly pass off pets as service animals make things worse for disabled people who rely on service animals. People are already primed to suspect anyone who isnt obviously blind who has a service animal of trying to put one over on them. People who might think its harmless to fudge the issue should be reminded of the harm they do.

On the other hand, how common is this really? Since were not cross-examining everyone who claims their pet is a service animal, and many legitimate disabilities are invisible, how do we actually know there’s widespread cheating?

Plus, if we require tighter regulation and credentials for service animals, and empower basically everyone to demand at will to see a dogs certificate or whatever, will that make things better for disabled people or harder?

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Friday, February 27, 2015

Disability Blogger Link-Up

the word Blog surrounded by word cloud
Is it the weekend again already? Heres the Disability Blogger Link-Up!

Use the thingamajig below to post a blog post or article on something related to disability  something you want others to read.

To make the articles easier to browse, in the “Your name” blank, type the title of the article. In the "Your URL" blank, paste the whole website address of the thing you are posting.

Then click the "Enter" button. That's it!

Note: If your post doesn't appear immediately, try "refreshing" the page a few times. Sometimes it takes a little while to show up. Also, feel free to post more than one item. Finally, you might want to add a comment at the bottom of this post, to identify yourself or add an explanation or comment about the items you are posting.

Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday.

Thursday, February 26, 2015

Throwback Thursday

Illustration of the time machine from the movie Time Machine.
A year ago in Disability thinking  Thank You Gail Collins.

The New York Times Columnist pushed for ratification of the UN Convention on the Rights of Persons with Disabilities.

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Wednesday, February 25, 2015

Wanted: Finance Guru For The Disabled

Photo of an open hand with an illustrated green dollar sign above it
Danielle Kurtzleben, Vox.com - February 25, 2015

(Note: This article isnt about making money as a blogger, its about a more general strategy for handling money, saving, and investing).

I am tempted to say that personal finance advice like this is irrelevant to most disabled people, especially those of us who are unemployed, underemployed, and rely on benefits for a significant portion of our incomes. Still, a lot of what the man says about frugality is applicable to us, maybe even more than to higher income folks.

Are there any good, level-headed personal finance gurus out there who have done the research to figure out ways to do more than survive financially, for disabled people with low incomes, benefits rules to follow, unreliable capacity to ramp up work as needed, and fixed disability-related expenses? Are there any geniuses out there who have solved the puzzle of how to get ahead when you are disabled?

Without digging too deeply, it seems to me the biggest barrier we face is the disincentive to invest and build wealth. I think a lot of us could do so modestly, slowly, partially by cutting back on comfort products like this guy suggests, if it wasncounterproductive to invest at all. The ABLE Act is the best attempt so far to remove that particular glass ceiling, but a lot of people wont be able to use it because of the age when their disabilities set in. And in any case, its more of a workaround, not a direct change in benefit programs asset limits.

Surely there must be someone out there who could come up with a better system for handling money than most of us use. This guys retired. Why doesnt he take a few months … just out of curiosity … to see what he can adapt for us? Or, maybe the wisdom likes scattered among all of us. Maybe if we share our individual “one weird tricks” we might come up with something.

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Tuesday, February 24, 2015

Disability In The UK, Viewed From The US

Guardian Staff, The Guardian - February 23, 2015

I’m not that interested in this article specifically. Iciting it only because it got me thinking about how disability issues and disability culture in the United Kingdom are different than they are in the United States. Theyre different, but in subtle ways I haven’t quite mapped out yet.

- It seems like ableist slurs and personal harassment get more mainstream press in the UK than they do in the US.

- It also seems sometimes like disabled people in the UK fight more for benefits than they do for civil rights. If so, its probably because they are forced to, and I worry that well soon have to do the same here in the US.

- I have also noticed that there is a lot less discussion in the UK over terminology. It seems like either they settled all those questions years ago, or else they just do care about it as much. Everyone seems to use “disabled” and “disability” and leave it at that.

I guess this is a comment thread. Id like to know, from both British people and American observers, what’s different about disability in the UK?

Monday, February 23, 2015

Represent

Blue pen sketch of an old-style movie camera
I haven't always felt as strongly as some disabled bloggers and tweeters about non-disabled actors playing, and getting accolades for playing, disabled characters. I don't like it, but on balance, I am usually more interested in how disabled characters in movies and TV are developed, whats said about disability in the script, and the messages sent by what happens in the stories.

Still, I think it's important for people to understand that those of us who aren't celebrating Eddie Redmaynes Oscar for playing Steven Hawking aren't just sourpusses or political correctness commisars. There are substantive reasons why this is a real issue.

Supply and Demand

There are relatively few acting roles for disabled characters. There are relatively few  but a lot more than zero  actors with disabilities. It is quite rare for disabled actors to be cast as characters who arent specifically designated as disabled. And it is extremely rare to cast disabled actors to play disabled characters. Sort through all that, and you will see how ridiculously hard it is for disabled actors to get work. With all the odds against them, how must it feel for disabled actors to watch the few disabled roles there are consistently go to non-disabled actors? Plus, when the roles are prominent and popular, those non-disabled actors are praised even more for playing disabled … like it's a double back-flip feat of ACTING! In fact, playing disabled is a well-known shortcut to an Oscar for non-disabled actors. Even people who arent familiar with disability issues often snicker about it. The comedy Tropic Thunder forthrightly joked about it.

Accuracy

The first film about disability that really excited me was My Left Foot, in which non-disabled actor Daniel Day-Lewis played Christy Brown, a real-life Irish poet with Cerebral Palsy. A young non-disabled actor Hugh O'Connor played Christy as a child. Day-Lewis won the Best Actor Oscar for his portrayal, winning particular praise for the supposed authenticity of his movements and vocalizations. When I saw the film, it seemed to me like it was pretty accurate. He looked and sounded much like people I knew who had CP on the more severe” side of the scale. Granted, I didn’t really pay much attention to the finer details. And I have since been told that the portrayal may have been played up for emotional effect. That can be hard to define, as everyones disability is different, and acting always requires the portrayal (i.e. faking) of emotions. Still, if crucial details are wrong, and especially if actors, writers, and directors knowingly make a character’s disability look more exaggerated than it would be in real life, thats just vile, leading to the next point ...

Are You Making Fun Of Me?

maysoonzayid: DD is a phenomonal actor but he was an unwatchable cartoon in MLF @AndrewPulrang @dominickevans #filmdis

dominickevans: @maysoonzayid @AndrewPulrang those portrayals also turn to stereotypes (i.e. autistics rocking as central characteristic)

maysoonzayid: Right I'd be horrified to see how inaccurately an AB actor would clown how CP twists my lips @AndrewPulrang @dominickevans

dominickevans: @AndrewPulrang @maysoonzayid I personally find it very hard to look past the stereotyping physically... that actors seem to do

Sunday afternoon, I had an interesting Twitter conversation about all this with a disabled actor, Maysoon Zayid, and a disabled director, Dominick Evans, who are both regular participants in the weekly #FilmDis discussions about disability on screen. Dominick is the organizer. He and Maysoon were down on “My Left Foot”, and in addition to what they felt was the portrayal’s inaccuracy, they both cited a sense that it wasn’t just wrong, but also a caricature … cartoonish and painful to watch as disabled viewers. I got what they were saying, but I’m still struggling with this. On the one hand, I think a lot of people see Day-Lewis’ Christy Brown, and maybe Redmayne’s Steven Hawking, as bravely honest depictions, not “prettied up” for more sensitive eyes and ears. That’s how I saw “My Left Foot” back in 1990. Of course that presupposes that whats being portrayed is terrible hardship, which is only one facet of disability, for some disabled people.

On the other hand, especially if I had that exact kind of disability, I might have seen the same depiction as mockery … like a class clown in the hallway executing a “perfect" imitation of my odd way of walking and posture. The actors in question almost certainly weren’t trying to be mean that way, but it’s possible that at times they were trying to shock, and that’s nearly as bad. Now, I suppose a disabled actor might end up doing the same thing, but I think it’s far less likely, because they probably know better where to draw the line, when to say “no”. Also, I think there’s a less tangible issue here of trust. It’s hard enough for some of us to see “ourselves” on screen, often mocked, abused, or turned into cardboard cutouts. But if we know going in that the actor is disabled, maybe it helps us get through it, knowing that “our” portrayal is more likely to be in good hands.

Someone To Say No"

Non-disabled writers and directors are like children when it comes to disability. They are over-awed by it, and prone to mystify or fetishize it in unhelpful, sometimes disgusting, often profoundly boring, clichéd ways. A disabled actor can be like an adult in the room. If a director pushes them to do something exaggerated, inaccurate, or stereotypical, the disabled actor can say, Hang on a minute, lets talk about this. Being only vaguely aware of the power relationships in Hollywood, Im not suggesting this would always work. Still, having someone on set with real life, personal experience of disability would at least increase the chance that a finished work would be accurate and not over-dramatized, at least in regard to the disability itself.

So no, advocating that disabled actors be hired to play disabled characters isnt tokenism. It isnpolitical correctness gone mad. It should be standard operating procedure. Its good for disabled actors, it helps improve perceptions of disability, and it makes better art.

Related article:

Justin Moyer, Washington Post - February 23, 2015

Despite some amateur-hour terminology slip-ups, (“handicapped” and “malady” are NOT synonyms for “disability" you can pull out of your Thesaurus just to add variety), this is a pretty good illustration of just how much Oscar loves disability by non-disabled actors. It's interesting to note that Mr. Moyer chooses 1988 as the start date, when two years earlier, Marlee Matlin won the Oscar for Best Actress for "Children Of A Lesser God" … a woman with a disability playing a character with that disability.

Sunday, February 22, 2015