Disability Blogger Linkup

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It's time for the May, 2017 Disability Blogger Linkup! I've seen a lot of great articles and blog posts recently, so there should be no shortage of good things to post.

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 the main page of the website it's on.

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 any questions, feel free to email me at: apulrang@icloud.com

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, June 9, 2017.

Disability Blogger Linkup

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It's time for the April, 2017 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 the main page of the website it's on.

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 any questions, feel free to email me at: apulrang@icloud.com

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, May 12, 2017.

Misery Calculator: Reheated, Renamed

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This is the third time I've written about this, but it's an idea I can't fully let go of, so ...

One of the first things I wrote on my blog that came straight out of my head, and wasn't a commentary on something else, was an idea I called the Misery Calculator.

It grew out my attempt to more fully understand one of the core ideas of disability culture ... that the suffering in disability comes from ableism and external barriers, not from our disabilities themselves. I accepted this for years. Yet, I always found that there were some aspects of my actual disabilities that were hard to live with, and couldn't be blamed on anything or anyone else but my own physical condition. When I got into disability blogging, I found others in the disability community, particularly "chronically ill" people and "spoonies," who seemed to have the same experience, somewhere between the Medical and Social Models of disability. A perfectly accessible, non-ableist world would be a lot better in a thousand ways, but at least some of our disabilities would still be there, causing at least some amount of misery.

So I came up with six measures of "misery" associated with disabilities. Three of them are basically "medical," existing in your own body, and three are "social," factors that exist in the world outside of yourself. For this post, I've tweaked the categories and definitions a little, but they're basically the same. I've also decided to change the name of the thing to Disability Calculator. Here are the measures, roughly defined:

Medical

Pain / Illness
How much do you hurt and / or feel like garbage?

Stamina / "Spoons"
How much energy do you have to do things?

Physical & Mental Functioning
How well or poorly is your body and / or mind operating?

Social

Physical Barriers
How often are you blocked or inconvenienced by physical barriers?

Lack Of Tools & Supports
To what degree do you have or lack the tools and supports you need, and do they work right?

Ableism
How much does disability prejudice deprive you of opportunities and / or add to your stress?

This corresponds to the Medical Model / Social Model idea. The six point set of measures, divided into two broad categories, allow you to get a feel for how much each "model" really describes your disability experience. You also get a 0 to 30 point measure of how much overall disability you experience, both Medical and Social.

I am going to start running a weekly score for myself, just to see how much my Medical Model / Social Model balance changes over time and in what ways. Here is my score for this past week:

What this tells me is that while I experience a significant amount of difficulty that corresponds to the Social Model of disability, most of the problems I have with my disabilities come the disabilities themselves. And by far the most significant single factor for me is stamina. I'm rather a "spoonie." On the other hand, I do encounter some physical barriers in my daily life, (mostly having to do with being 4 feet tall in a 6 feet tall world), and some ableism, On the plus side, I have pretty good and effective, (though not complete or perfect), tools and supports. At least that's how it was for me last week.

Try it yourself. Give each measure a score between 1 (good) to 10 (bad), based on your disability experience the last week. What's the balance for you?

Quarterly Wrap-Up

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Throwback Thursday

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Two years ago in Disability Thinking: For Senate.

So, Representative Duckworth won. She is now Senator Tammy Duckworth. Her election was one of the few bright spots for me in an otherwise demoralizing 2016 Election Night.

It's too early to tell what kind of profile Sen. Duckworth will develop in the Senate, but because she's disabled and so am I, she feels like one of my Senators. And on the subject of disabled people in public office, two things:

1. In the survey we conducted for #CripTheVote last Spring, the top disability priority for the 508 respondents was getting more disabled people elected and appointed at all levels of government.

2. This Sunday #CripTheVote will host a Twitter Chat on Disabled People in Public Service ... April 2, at 9 PM Eastern Time.

Weekly Reading List

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The GOP health care plan could force Americans with disabilities back into institutions
Ari Ne'eman, Vox.com - March 23, 2017

This is quite simply the best explanation I have ever seen of the complex relationships between home care, nursing homes, and Medicaid. It's such a core issue for a portion of the disabled community, and although it's not hard to understand if you are directly involved, it has always seemed unusually hard to explain to the uninitiated. This is great, and will continue to be essential reading, even though the specific health care bill it addresses is now dead.

Farms For Disabled People Aren't A New Idea
Kit Mead, NOS Magazine - March 15, 2017

Not many things annoy me more in the disability rights field than happy, naive stories about "innovative" new approaches to "taking care of" disabled people ... approaches that are almost always merely cosmetically modernized versions of old-time institutions. In fact, the ongoing and renewed seduction of institutions is a fascinating topic all on its own. Why do individualized, community-based approaches never seem to catch fire the way newfangled "facilities" and "assistive living communities" do?

Losing Friends To Ableism
Erin Hawley, The Geeky Gimp - March 18, 2017

I'm Celebrating Cerebral Palsy Awareness Month For the First Time
Keah Brown, Teen Vogue - March 24, 2017

Why I Call Myself "Disabled"
Karen Hitselberger, Claiming Crip - October 15, 2015

I group these last three pieces together, because they are all outstanding examples of disability blogging on the personal nature and facets of ableism. It's especially meaningful to me, because I spent most of my life ... including over 20 years in Independent Living ... being kind of dismissive of the emotional side of disability. I still sometimes feel a Gen-Xer's nagging concern about too much "navel gazing" in the movement. But it's mainly writers like these who finally broke through my shell and got me to take issues of body image, language, and internalized ableism seriously. I am very grateful.

Undercooked Blog Posts on Disability and Health Insurance: Part 4

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I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I decided to hold off on the final post until after the House vote on the AHCA was resolved one way or another, or, you know, ANOTHER.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy - March 19, 2017

Part 3: Questions for Lawmakers - March 20, 2017

Post Four: A Positive Message, or What Do We Actually Want?

So, now that the American Health Care Act has been withdrawn ... this version of it anyway ... what kind of health insurance system would actually be good for disabled people? Put another way, if Hillary Clinton were President and there were slight Democratic majorities in Congress, what would the disability community be fighting for in health care?

I don't think we as a movement should spend too much time trying to decide which grand health care scheme we should endorse. Instead, let's focus on what disabled people, specifically, need from ANY health care system.

I would like to suggest three possible criteria:

1. No out of pocket price difference or service restrictions, regardless of disability.

2. Long term care at least as strong and community-based as found in the best state Medicaid programs.

3. Full eligibility for disabled people, regardless of employment status or income.

It may take years before we can once again really focus on disability health care policy we want, and in the meantime, we will probably have to keep playing defense. But just in case we are ever asked, "What do you really want then?" I think it's a good idea to remind ourselves what we are actually after.

What do you want to see in health care policy for disabled people?

Undercooked Blog Posts on Disability and Health Insurance: Part 3

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I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting today and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy - March 19, 2017

Post Three: 3 Questions for Lawmakers

All cynicism and partisanship aside, there are lawmakers who seem like decent people, but support cruel, nonsensical policies because they believe in AN IDEA. Right now, they are mostly Republicans, and they usually have more selfish motives for regressive tax-cutting and dismantling, rather than improving a moderately successful program like Obamacare. But most of them also say they are motivated by something like idealism ... for instance, belief in rewarding and incentivizing hard work, or giving people "a stake" in health care by making sure everyone has to pay something for it.

I would like to ask these members of Congress three questions about how their beliefs and ideals play out in the real world for disabled people:

1. Do you believe that when the government provides material support for poor people ... things like health insurance, disability, food stamps ... it is fundamentally bad for them?

2. Do you think that capping or cutting Medicaid will prompt significant numbers of disabled people to get jobs, and earn more money than they do now? Do you think that having to pay more for health insurance will make disabled people suddenly get healthier, and pursue cost-saving cures and therapies we previously ignored?

3. Do you believe it is better for people with significant disabilities if the government to pays for nursing home fees, rather than the cost of home care?

There is obviously some slant to these questions. The "right" and "wrong" answers are implied. At the same time, I think they are legitimate, honest questions Congress people should at least have to answer before they vote.

Undercooked Blog Posts on Disability and Health Insurance: Part 2

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I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting Saturday and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy

I worry a lot ... probably too much ... about overstating how awful and / or evil the Republicans' plans for health care are. Although I believe that more disabled people WILL DIE if the AHCA is passed, I don't believe that anyone of consequence actually wants that to happen ... apart from maybe the odd Twitter troll or Bannon acolytes who enjoy dispassionately discussing the benefits of having fewer disabled people to around to weaken our bloodline or whatever.

To me, the question of intent is almost beside the point. You can do a lot of damage to disabled people accidentally, and that's usually how we get hurt, both on the policy and personal levels.

I'm a small guy, 4 feet tall, and not super steady on my feet. Whenever I think of the danger to disabled people when hostile or indifferent politicians and activists get excited about big ideas and big changes, I think of myself trying not to get knocked over or trampled at a frat party. It's not that the revelers around me mean any harm. The problem is they don't notice I am there at all until it's too late. All they can do after backing into me is slur, "Oh, sorry little buddy ... didn't see you there!" and wander off. You see, they are busy doing other things, and they don't need to have it out for me to hurt me ... indifference is more than enough.

Politics is like that for disabled people, for the disability community. People have these other objectives and assumptions that may or may not be fine as far as they go, but they only rarely take the time to check and really see whether what they are doing will work for us, or whether their awesome ideas just don't apply to us.

By the way, this is somewhat of a nonpartisan phenomenon. I had to be careful in parties at my own fraternity in college, even though I felt comfortable with these people and they had a pretty good idea of my unique situation. The main reason I didn't support Bernie Sanders' Presidential run is that he never really took the time to convince the disability community that, for instance, "Medicare For All" would include the same or better home care and community services we get from Medicaid. I don't think for a moment that Sanders wants to institutionalize disabled people, but I'm still not sure he understands how that risk relates to health care proposals, even ones lots of disabled people would otherwise support.

At the moment, however, we are all living in a straightforwardly hostile frat, where angry, hyped up, brothers seem set on making the most of a newly won and unprecedented degree of freedom. They really do want to party like it's 1955, and we can easily get trampled in the process, because it seems like we simply do not exist in their vision of American Greatness.

Undercooked Blog Posts on Disability and Health Insurance: Part 1

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I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting today and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part One: 5 Basic Points

1. Most people don't really understand how health insurance works for disabled people. A lot of disabled people don't fully understand either.

2. Health insurance isn't something disabled people choose to buy "in case we get sick." It's something we have to have because we use it all the time, just to survive and function.

3. A subset of disabled people need what's broadly termed Long Term Care, which is everyday direct help to do basic self care, like getting out of bed, bathing, dressing, using the toilet, cooking and eating, etc. Pretty much the only health insurance that covers this over a disabled person's lifetime is Medicaid. Medicare doesn't cover it. Almost no employer-provided or individual market policies over it. Medicaid is the whole ballgame.

4. One way to control the cost of our care is to provide all the care possible in our own homes, rather than nursing homes and other institutions. Again, individual cases vary, but in general, supporting home care is cheaper and it's what most of us want anyway. But you have to be deliberate about doing this ... it won't just happen by lifting regulations and giving everyone theoretical "choices" with insufficient resources. And let's be clear, the savings from switching decisively to home care would be significant, but not revolutionary.

5. Individual cases vary, but overall, disabled people cost more to cover than pretty much everyone else ... sometimes a lot more. And there is almost nothing individual disabled people can do to mitigate this. Market flexibility, financial "skin in the game," and "personal responsibility" have little to no impact on our concrete needs. At best we can trim at the edges with assistive technologies and creative self-care techniques, but frankly, most of us have pushed the envelope on that already.

The point being ... there is really no untested way to save massive amounts of money on disabled people, other than to let us die or become permanent adult wards of overworked, under-resourced families. There is no super-obvious, low-hanging fruit of neglected solutions in this field ... aside from the fore mentioned shift away from nursing homes towards home care. Even that can only save so much. And there's currently basically nobody and nothing in the for-profit or even non-profit private sector that can meet the needs of disabled people without government funds.

There are no miracle cures for most disabilities, and their are no miraculous private-sector fixes to disability policy.