Sunday, July 19, 2015
Weekly Wrap-Up
| Monday, July 13 |
|   |
| Tuesday, July 14 | It’s Refreshing |  |
| Wednesday, July 15 | #DisabilityStories |  |
| Thursday, July 16 | Throwback Thursday: Remembering The Pakleds |  |
| Friday, July 17 | Disability Blogger Link-Up |  |
| Saturday, July 18 | Time For A New Addition To The ADA |  |
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Saturday, July 18, 2015
Time For A New Addition To The ADA
The Community Integration Act looks like a good candidate to be the next big legislative goal for the disability rights movement. It might even be the biggest deal since the Americans with Disabilities Act, which is appropriate since it’s being presented as a 6th section of the ADA itself. It would add much bigger teeth and operational specifics to the Supreme Court’s 1999 Olmsted decision, which was an interpretation of the ADA.
The Community Integration Act would make every state:
"... provide community-based services first, and offer home and community based services to people currently in institutions as a civil right. CIA requires states and insurance providers that pay for long-term services and supports to make real and meaningful changes that support the right of people with disabilities to live in freedom."
You can read all about it at the link above, but the premise is fairly simple. The Community Integration Act would strengthen the principle that people with disabilities who need “nursing home level” of support services have the right to get those at home. They wouldn't have to move into a nursing home or other “care facility” simply because they can’t get enough hours of home care … or because they don’t want their family to spend hours every day supplementing their care ... or because their state has decided not to fund more than X number of hours per day of home care ... or because a doctor or nurse decides they aren’t safe where they are for some reason. It would be as close as we are ever likely to get to an absolute right for every disabled person, no matter how severe their disability, to live in their own place, if that’s what they want. Disabled people would no longer live in institutions "because that’s all there is."
A new version of the bill hasn’t been introduced in Congress yet. The disability advocacy group ADAPT says that Sen. Chuck Schumer is interested in supporting the bill, but “needs a little push."
Click here to Take Action ... Urge Sen. Schumer to introduce the Community Integration Act before July 23, 2015.
With #ADA25 it's time to tear down the walls that trap us in institutions @SenSchumer It is time to MAKE history with #CIA4ADA
— Bruce Darling (@ADAPTerBruce) July 16, 2015
I am sure there are a thousand details and questions to flesh out. How will the Community Integration Act apply to people with developmental disabilities? Would any additional funding be provided? How, exactly, would the affordable housing part of the bill work?
Whatever the answers to these and scores of other questions, I really think this is a great start at finally slaying dragon … putting and end all unwanted institutionalization. Let’s get started.
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Friday, July 17, 2015
Disability Blogger Link-Up
Technical note: To make the links easier to browse, in the “Your name” blank, type the title of the article. In the "Your URL" blank, paste the address of the item you are posting.
Then click the "Enter" button. That's it!
Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next regular Disability Blogger Link-Up Friday, July 31, 2015.
Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next regular Disability Blogger Link-Up Friday, July 31, 2015.
Thursday, July 16, 2015
Throwback Thursday
I recently re-watched "Samaritan Snare.”
Ooof, it’s pretty awful. I think the writers meant well. I think they were trying to make some kind of bland point about underestimating people you assume are weak or incapable. But the portrayal is so insulting that any good is undone. Ultimately, you have a fictional alien species transparently crafted to display stereotypes of cognitive impairment. You have lines clearly intended to be mildly comical. You have our good Starfleet officers responding with a veneer of patience, just barely hiding irritation at having to deal with these obviously stupid humanoids. Hardee har, har! You have to work awfully hard to pull a positive message out of all that. Just check out the comments to the video below.
Ooof, it’s pretty awful. I think the writers meant well. I think they were trying to make some kind of bland point about underestimating people you assume are weak or incapable. But the portrayal is so insulting that any good is undone. Ultimately, you have a fictional alien species transparently crafted to display stereotypes of cognitive impairment. You have lines clearly intended to be mildly comical. You have our good Starfleet officers responding with a veneer of patience, just barely hiding irritation at having to deal with these obviously stupid humanoids. Hardee har, har! You have to work awfully hard to pull a positive message out of all that. Just check out the comments to the video below.
The episode is worth watching though, if only to be reminded that good intentions don’t guarantee good disability depictions.
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Wednesday, July 15, 2015
#DisabilityStories
Erin Blasco - July 14, 2015
I will be spending most of the day dipping in and out of this huge Twitter event, marking the 25th Anniversary of the Americans with Disabilities Act. It’s organized by the National Museum of American History. Click the link above for a good summary of what it’s all about and how to participate. Click here to see a schedule for the day.
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Tuesday, July 14, 2015
It's Refreshing
Here we have a rare and refreshing thing. A business expert writes an article advocating stronger enforcement of disability rights laws, and it is published on a business magazine’s website.
What’s more, the writer, a non-disabled person who gained his initial insight through a temporary impairment, makes a stronger, simpler, more insistent case for disability rights laws than a lot of disability journalists, bloggers, and activists. Well, better than me anyway. I tend to hedge my advocacy posts with all sorts of caveats and acknowledgements of opposing views, something I think a lot of us are conditioned to do.
We have to keep reassuring the “average reader” that we are rational and realistic. We know our issues rarely make it to the front burner. We know “most people” don’t really understand, so they can’t be blamed. We have learned to live with unnecessary injustice. We’re not happy about it, but we’re not surprised.
Maybe that’s why laypeople and newcomers to disability issues can sometimes speak with a clearer, louder voice. What they lack in authority they make up for in fervor and sheer astonishment. They see, more clearly and emotionally that than some veterans of the struggle, that disability discrimination and inaccessibility at this point isn't just wrong, it is surprising, and it's bizarre.
It doesn't happen that often, but when a non-disabled journalist does a disability story and instead of crying tears of pity, instead asks, basically, "Why the hell are things still so shitty for these people?"... well, it's refreshing.
Monday, July 13, 2015
Weekly Reading List
A selection of disability-related articles and blog posts I read last week, but didn’t have a chance to link to or discuss. It’s an opportunity to catch up with some of the good stuff that’s out there, but doesn’t fit neatly into the week's “big stories.”
Associated Press, New York Times - July 12, 2015
“Disability Pride” parades seem like such a natural that I am surprised that they are only now starting to happen. One of the hardest things about having a disability, for so many of us, is that lingering feeling of not wanting to be seen. Having a parade where we literally put ourselves on display, but together, on our own terms, with pride and joy, not angling for sympathy, has got to be a transformative experience for a lot of disabled people.
Andrew Imparato, Disability Blog - July 2, 2015
Andrew Imparato calls for people who still hide or downplay “non apparent” disabilities to be “out” about them and embrace them. He makes an excellent argument for this approach to disability. It’s good for he individual soul, of course, but being open and clear about our disabilities also helps reduce the stigma of all disabilities, including those that can’t be hidden or easily ignored.
By the way, do read the comments. If you are like me, you’ll be discouraged and baffled at first. The post is so positive and important, and yet so many of the comments are sad, angry, and very personal … deep in the intricate weeds of very individual problems. But it’s important to hear these stories, too, even if they don’t mesh well with our deep thoughts about “what it means” to be disabled.
Tiffiny Carlson, The Mobility Resource - August 2, 2013
Okay, it’s an old article, and and the 10 points are all things we have heard and read before in some fashion. But they are all spot-on, for kids, and I think for non-disabled people of all ages. Some aspects of disability awareness are really pretty simple, no matter how hard we try to overthink them!
Lori Plyler, The Mighty - July 8, 2015
We need more blog posts and articles like this, written by parents who have disabilities themselves. I especially appreciated how an expression of love and acceptance from her son helped her process very old wounds from childhood teasing and bullying. While it’s certainly possible to live too much in our past traumas, in general, I think more of us with disabilities whistle past them without really dealing with them, and I don’t think that’s such a good idea in the long run. Anyway, it’s a lovely article. I must say, too, that although I generally resist any kind of “inspirational” stuff to do with disabilities, The Mighty is one of the few publications that strikes a nice balance and manages to do inspiration without being syrupy.
Arthur Delaney, The Huffington Post - July 10, 2015
There is a lot to unpack in this article on the coming funding shortfall for Social Security Disability. That’s because the issues are legitimately complex and shot through with ideological biases from all sides. Paul Ryan is correct that there are disabled people who want to work, who can be limited by the structural disincentives of Social Security. However, that’s almost completely unrelated to the funding problem. On the other side of the coin, we have an interesting argument that while many disabled people do want to work, the number who might realistically succeed in the workplace, even without disincentives, may be much smaller than we disability activists like to admit. I think the key is to keep the long-term issue of reform separate from the short-term funding problem, but I don’t see it working out that way. I fear we will go through what the UK has gone through over the last several years … “reforms” that look good and optimistic on paper, but are really motivated by a combination of cheapness and an ideological opposition to social spending, period.
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Podcast Update
No Seinfeld for you! Not today anyway.
I originally planned to post a Disability.TV Podcast episode on Seinfeld today. Instead, I found myself rethinking how to do the podcast going forward. The upshot is that I am making a couple of adjustments based on feedback received so far in the Visitor Survey. If you haven’t yet taken the survey, please do. It will stay open indefinitely.
I originally planned to post a Disability.TV Podcast episode on Seinfeld today. Instead, I found myself rethinking how to do the podcast going forward. The upshot is that I am making a couple of adjustments based on feedback received so far in the Visitor Survey. If you haven’t yet taken the survey, please do. It will stay open indefinitely.
1. Shorter Episodes
Starting Monday, August 3, podcasts will come out on the first and third Monday of each month. Each episode will be about half an hour long, sometimes a standalone episode, sometimes half a two-part installment on a single TV show or topic. In addition to cutting longer episodes in half and posting them two weeks apart, I will also work on being more concise overall.
2. Transcripts
Every episode will include a complete written transcript. It takes about a week to get transcripts done, so I will record and each month's episodes first, order the transcripts, and post the episodes later when the transcripts are done. Transcripts are essential to make podcasts accessible to deaf and hearing impaired people, and may also be helpful for others as well.
Here is the tentative schedule for the next few months:
August, 2015
Aug 3 - Part One
Aug 17 - Part Two
September, 2015
Sep 21 - Part Two
October, 2015
Oct 5 - Part One
Oct 19 - Part Two
November, 2015
Nov 2 - Part One
Nov 16 - Part Two
December, 2015
Dec 7 - Autistic Characters
Dec 21 - Disability Tropes
January, 2016
Jan 18 - Part Two
If you would like to be a guest for any of these topics, please let me know. Send me an email at: apulrang@icloud.com. You can also contact me through Twitter: @AndrewPulrang or Facebook. I could also use some help paying for transcripts and other technical improvements. Check out the Support page to see how you can contribute.
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Sunday, July 12, 2015
Weekly Wrap-Up
| Monday, July 6 |  | |
| Tuesday, July 7 | Stuff That Worries Me |  |
| Wednesday, July 8 | Podcast Preview: Seinfeld |  |
| Thursday, July 9 | Digging Into The Employment Gap Throwback Thursday |   |
| Friday, July 10 | ADA Anniversary Twitter Event |  |
| Saturday, July 11 | Talk To Your Doctor |  |
Saturday, July 11, 2015
Talk To Your Doctor
Sarah Kliff, Vox.com - July 8, 2015.
I don’t have a problem with Medicare paying doctors to have “end of life" consultations with their patients. All that talk about “death panels” a few years ago was cynical nonsense, meant to stoke peoples’ fears in order to defeat the Affordable Care Act. I don’t believe there’s a plot to hoodwink people into agreeing to euthanasia or anything like it.
That said, Sarah Kliff is onto something when she writes about peoples’ fear of losing control to professionals and bureaucracies. It’s a real fear, exaggerated, but based on real-life experiences people do sometimes have with merciless insurance companies and dismissive or condescending doctors.
Many disabled people have a related, but different concern. It may be hard for non-disabled people to believe, but I think all of us with disabilities wonder from time to time whether some day our disability-related needs will finally be too much for our coworkers and supervisors, our schools, our families and friends. Long term care is widely understood to be a family problem, a stressor that breaks marriages and causes burnout, for the caregivers. Medical technologies like ventilators and wheelchairs are still spoken of as traps and millstones, not life-savers and mobility aids. Again and again we are told, indirectly but loud and clear, that a significant number of our fellow citizens bitterly resent their tax dollars paying for any of our care and maintenance, which is assumed to be some kind of major risk to public solvency. The constituency of people who argue for legalizing suicide huge, based on the assumption that ongoing life with disabilities is intolerable and any sane person would rather be “allowed” to die. It doesn’t help when experts who one minute are all concerned about peoples’ wishes being known and respected, can’t help themselves from noting how much it costs to keep people alive “on machines."
On top of that, I think there is a legitimate concern that medical professionals tend to view life with disabilities quite negatively, in some cases worse than less informed laymen. To many doctors, disability means life with everyday care needs that will never result in a “complete recovery.” A reasonably good outcome for us may, for many doctors, seem like a professional failure.
The crux of the problem is that too many people confuse disability with this vaguely defined period known as “end of life.” They are not always the same thing.
I’m not worried about people who have lived with disabilities for a long time. We know the score, and we can speak for ourselves in no uncertain terms about what “quality of life” means to us, regardless of anyone else’s perceptions. What worries me is people new to disability, and people not disabled yet, trying to think intelligently about what they would want if and when it happens to them. What will they understand about living with disabilities if they only hear about it from a doctor?
All that can be addressed, however, so that “end of life conversations” can be valuable and empowering. Really, disabled people should push harder than anyone for these explicit, very specific conversations. If we want our lives to be valued, if we want to live no matter what the cost or how scary and icky we look to others, then should use these conversations to speak up and say so, very specifically, individually, to our own doctors.
Which reminds me to stop procrastinating and review my Health Care Proxy and Advance Directives … and to have a conversation about these things with my doctor.
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Friday, July 10, 2015
ADA Anniversary Twitter Event
Ellen Blasco, National Museum of American History - July 8, 2015
As I post this, we are only days away from the 25th Anniversary of the Americans with Disabilities Act. If you have disabilities, if you are related to someone with a disability, or if you are just interested in disability issues and culture, I encourage you to join in a day of Twitter discussion about the ADA, hosted by the National Museum of American History, part of the Smithsonian Institution.
I am still working on a complete ADA Anniversary post, with useful information about the law, memories of when it first passed, and an assessment of how effective, or not, it has been. For now, I will just say that I feel like the Americans with Disabilities Act has had more impact as a moral, almost spiritual victory for the disability community, than as an actual civil rights law.
What do you think? What does the ADA mean to you? What are its strengths and weaknesses? How much of a difference has it made in the lives of Americans with Disabilities?
It looks like the Twitter chats happening all day on July 15th will be a great place to talk about it and find out what others think.
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