Throwback Thursday

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

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

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

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

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

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.

My Obamacare Story

The White House wants to hear peoples' personal stories about the Affordable Care Act, a.k.a. Obamacare. I think I know what kind of stories they hope to hear, but the format of their inquiry allows for open-ended, freestyle response, so here what I submitted:

I have had physical disabilities all of my life. Until I was 22, I was on my father's health insurance. He was an independent pediatrician, and I'm sure paid for the family's health insurance out of pocket, though I have no idea at all how much he paid. From my perspective as a child and youth, as far as I know, we never had any problem getting my many surgeries, braces, hospitalizations, and therapies paid for.

Later, my father went to work in public health, and got the family's coverage through the county and later the state he worked for. When I aged out of family coverage, I was able to continue my coverage through COBRA payments, which were expensive, but necessary since going without health insurance was not an option, and a break in coverage would have created a "pre-existing condition" problem for picking up subsequent coverage.

When I finished graduate school I was able to get health insurance from my full time job. My disabilities were never an impediment to full coverage. I paid 20% of the premium for a pretty good plan.

In 2012, after a little over 20 years of full-time work, my disabilities altered and progressed in ways that made it necessary for me to stop working full time. I again continued my work-based coverage with COBRA for about a year. Then, through a combination of the Affordable Care Act and New York State's "Medicaid Buy-In" for working people with disabilities, I was able to qualify for Medicaid and continue to receive it while doing the part-time work that was within my capacities. Having gotten Social Security Disability, I also eventually was enrolled in Medicare.

At the moment, Medicaid and Medicare pay for the ventilator and oxygen concentrator I use every night while I sleep, and for medications I take every day to make my disability-related chronic health conditions controlled. These are life-preserving treatments, and they also make it possible for me to work to the degree that I can. Also, on average, I am hospitalized once every two years or so due to upper respiratory infections. There are effective treatments for this, but of course hospitalization is prohibitively expensive if paid for out of pocket. Without Medicaid, especially, I would be forced into a much more dependent situation and my health would deteriorate severely.

The Affordable Care Act was an absolutely crucial bridge from one work / health situation to another. And Medicaid itself is one of the main foundations of the life I live now. In the future, should I need everyday home care, I know that Medicaid will be there as no other insurance can ever be ... unless Medicaid is significantly cut or made into something less than a direct entitlement. The Affordable Care Act has been a tremendous benefit to me. And by making it possible for me to work to my changing capacities, it has enabled me to continue contributing to my community in the work I am able to do and the taxes I pay.

Disabled people in particular really need to talk in detail about not only Obamacare, but Medicare, Medicaid, and overall what health insurance means for us.

Click here to tell your story.

Weekly Reading List

The week's best disability reading ...

The Radical Disabled Americans Bringing Direct Action to Your Town
David Perry, Pacific Standard - March 13, 2017

This article is so much more than news about disabled people protesting the current administration's health care proposals. It is a vivid portrait of the ADAPT style of disability protest. Like many ADAPT actions, it's neither grandiose nor trivializing. Best of all, David Perry gets to a crucial point for people who, like me, sometimes wonder about the real value of protest ... that it's valuable for more than what it literally accomplishes.

New Production of “The Glass Menagerie” Stars Wheelchair User Madison Ferris
Seth McBride, New Mobility - March 9, 2017

This is the next major frontier for disability representation. When I was growing up and a young adult, it was a big deal to see actors portray disabled people and tell disability-related stories. For while there, I don't think it occurred to me or many others that we might expect the actors to have disabilities, too. At this point, I'm about 90% of the opinion that disabled characters should never be played by non-disabled actors. Put simply, disabled characters should be portrayed by disabled actors. This "Glass Menagerie" casting does that, and more ... apparently underscoring and re-interpreting a component of the play itself, and what it means for a character to have a disability.

Disabled Youth & Vampire Slayers
Andrew Pulrang, Disability Thinking - June 5, 2015

An internet friend who blogs and tweets for Easter Seals surprised me on Friday by tweeting about an old blog post of mine, drawing connections between one of my favorite TV shows and an important aspect of the disability experience. She posted it, I think, because Friday was the 20th anniversary of the show's premise. I re-read the piece, and it's a lot better than I remembered it! In fact, it really is one of the best disability items I read last week.

Weekend read: Stuck in transit — Getting around Montreal in a wheelchair
Jason Magder, Montreal Gazette - March 11, 2017

I got to know a few accessible transportation activists in Montreal last summer, when I did a presentation there on #CripTheVote. That's why this Montreal Gazette article stood out. It's also just a really good example of disability journalism that centers on the experience and perspectives of actual disabled people.

How People Commemorate the Day They Lost a Limb
Serena Solomon, Vice - February 27, 2017

I think you can go back and forth to opposite extremes on the question of whether disability is something to have pride about, or something that's inherently sad. Sometimes, positivity comes off as trying to hard, or as a kind of "party line" the disability community insists on for semi-political reasons. On the other hand, too many people assume that disability positivity must be a performance. The truth is something in between. Everyone processes their own disabilities in their own ways. Sometimes, pride is a bit of a put-on, but maybe that's not such a bad thing. Sometimes, acknowledging a darker view can be a welcomed return to reality. Or, it can be wallowing, quite detached from reality in its own way. The bottom line is that we should probably just take everyone at their word and not worry about what's real and what's a facade. People do what they must to survive and be happy. Also, amputated limb cakes are cool.

Disability Blogger Linkup

It's time for the March, 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, April 12, 2017.

Weekly Reading List

Two shelves of multicolored books

Well, semi-weekly, but who's counting?

America needs to decide: is health care something we owe our citizens?
Abbie Gluck, Vox.com - March 6, 2017

This first article isn't specifically about disability, but it discusses the deep background of ideas about health care, which is about the most immediately relevant policy issue for disabled Americans today. I think it's important to discuss the details of health care proposals, but it's also important for us once in awhile to ask what peoples' views are on the fundamentals, especially people who have set themselves up as opponents of more progressive programs like the Affordable Care Act. When all is said and done, do you think everyone should be insured, or is health insurance a reward for some formula of hard work and, I dunno, virtue?

Inspiration and objectification of people with disability - a resource for teachers and parents
Carly Findlay - February 5, 2017

Carly has done a great service explaining "Inspiration Porn" in a more accessible way for people who tend to resist the whole notion. In addition to being put off by the term, I think some people simply aren't familiar with the practice of deep cultural criticism, in which you dig underneath surface, apparent meanings to find the sometimes contradictory meanings below. When your disabled, you tend to get it instinctively ... it just feels wrong. But if you're not, it probably requires deliberate intellectual work. That's a big ask for most people, but Carly's work here should help a lot.

More Than A Villain: Ivar The Boneless And Disability
Alice Wong, Disability Visibility Project - February 28, 2017

Speaking of deep cultural criticism, here's an intellectually rigorous but also fun example of unpacking a disabled TV character. It makes me think about someday going back to my DisabilityTV Podcast.

Okay, it's not "reading," but here are a couple more examples of what things seem to mean vs. what they actually mean ... seemingly harmless questions and comments people make to disabled people that aren't so harmless once you think about them for a moment, especially from the vantage point of actual disabled people. I have to admit, the British sense of humor helps a lot!