From The Romantic Movement Tumblr blog, via Sick Days.
Frida Kahlo (1907.07.06-1954.07.13)
Tuesday, July 8, 2014
Here It Comes ...
Greg Sargent, The Washington Post - July 7, 2014
Rebecca Vallas and Shawn Fremstad, Center for American Progress - July 8, 2014
Looks like we may soon have a fight on our hands, similar to what’s been going on in the United Kingdom. There, the widespread, urban myth perception that massive numbers of people collecting disability benefits aren’t *really* disabled has been weaponized into policy, with results that are both tragic and ridiculous. Take a halfway decent idea … encourage disabled people to work if it’s possible … and implement it through contractors whose profit depends on cutting people off benefits, and you may get some savings, but you’ll also get human suffering on a grand scale.
If anything like this truly gets off the ground here in the U.S., one of my greatest fears is that disabled people who are less targeted as possible “cheats” will join in the witch hunt for other gray-area Disability recipients … people with less familiar, and more stigmatized conditions. It’s nice to think that when threatened, a diverse group of people will come together to defend their rights, but often, they subdivide instead and “eat their own”. I hope that doesn’t happen to us.
It’s not too early, either, for disabled people to learn more about the finances and politics of Social Security Disability, so we have rational arguments other than, “Don’t cut my benefits please”, if and when the axe comes out.
Monday, July 7, 2014
Disability Visibility Project
I have been seeing Tweets, articles, and blog post about the Disability Visibility Project for several weeks, and thought about posting something about it. Then, out of the blue, the project’s coordinator, Alice Wong, contacted me about being a “media partner”, which I am very glad to do.
What is the Disability Visibility Project? The project’s website explains it best:
"The project’s purpose is to collect stories from Americans with disabilities and have them archived at the American Folklife Center at the Library of Congress. Starting July 2014 to July 2015, anyone going to one of StoryCorps’ three locations can contribute their oral history in celebration of the upcoming 25th anniversary of the ADA. By tagging their interview as part of the Disability Visibility Project, they will become part of a collection of stories from the disability community. Having these stories recorded and available to the public will preserve disability history, making them accessible to all."
"The Disability Visibility project is a community partnership with StoryCorps. StoryCorps is an independent nonprofit whose mission is to provide people of all backgrounds and beliefs with the opportunity to record, share, and preserve the stories of our lives. StoryCorps partners with the American Folklife Center at the Library of Congress, and with National Public Radio with whom they have a weekly broadcast every Friday on Morning Edition."
On a personal note, I have been listening to StoryCorps programs on NPR for many years. I think it’s a great idea to make a concerted effort like this to get peoples’ disability stories included in this massive and growing audio archive of everyday peoples’ stories. If you are reading this blog, chances are you already like reading the thoughts and stories from disabled people, and maybe you share some of your own stories, too. This is another way to do that, in a somewhat higher profile way.
Even if you can’t get to a StoryCorps location, you can help by boosting the information to other bloggers, blog readers, Facebook friends, Tweeters, and other people you regularly reach through social media. Plus, this is a year-long project, so who knows? StoryCorps could come to you one of these days!
Sunday, July 6, 2014
Music For A Summer Sunday
Kelly Hogan covers The Hold Steady - The A.V. Club Undercover Summer Break.
A Disability "Red Flag"
I think I have identified another one of my personal Disability "Red Flags":
It is when people with disabilities say how much they wish or hope for a cure or significant improvement in their conditions, not because they want to live easier and be more functional, but because they want to look more normal and be more socially accepted. I’m not against medical research, new therapies, or miracle technologies. What troubles me is the idea of a person taking all the responsibility for ending stigma and discrimination on themselves ... like a gay person answering homophobia by trying really hard not to “act gay”, or like an African-American who hates her heritage more than she hates racism.
Either way, it’s a choice, and I try not to judge anyone’s personal choices or motivations. I also believe it’s quite a different matter to pursue improvements that stand a decent chance of making your life easier and freer in a practical sense. Walking is, in many cases, (though not all!) more convenient than wheeling. It also helps to be able to control your disability-related quirks and oddities at times, in order to make necessary interactions easier.
But when you read articles and hear news stories about new treatments and technical breakthroughs that promise "hope" for disabled people, you tend to hear more about people’s self-image and social acceptance than you do about practical benefits.
I just feel it’s galling for people with disabilities to feel like they have to “fix themselves” to fit in better, a priority that seems to relieve everyone else of the responsibility for, you know, being shitty to disabled people. Sadly, it seems like I hear this the most from parents of little kids with disabilities, and from older children and youth with disabilities. Shame and self-loathing runs deep, and “hope” for this or that condition seems to be all about a vision of some perfect “normalcy” that’s mostly a mirage, and not even a very important goal in the long run.
Weekly Wrap-Up
Sunday, June 29, 2014
Monday, June 30, 2014
Tuesday, July 1, 2014
Wednesday, July 2, 2014
Friday, July 4, 2014
Saturday, June 28, 2014
Saturday, July 5, 2014
A Little Moxie Summer Blog Hop - "The Early Years: A Letter to Myself"
Dear 13 Year Old Me:
You’re doing fine, and if you don’t listen to any of the little tips I’m about to give you, you’ll still be fine. Just keep them in mind, especially over the next ten or 15 years or so:
- Don’t blow off the idea of exploring relationships and sexuality, just because you’re convinced nobody would “want you”, and because right now you don’t actually really mind. You will think differently later on, and lack of earlier experiences can be a far greater hinderance than your physical appearance ... which, incidentally, isn't as weird as you think it is. Your default setting is to be a loner, and that’s fine, but it means you need to practice sharing your life with others, and letting them share their lives with you.
- Get away from Mom and Dad as much as possible. They are great, and I don’t mean you should literally leave them or push them away. But they have their own issues, and you could waste a lot of time tangled up in them when you should be exploring your own community apart from them.
- Learn how to work hard and work smart as soon as possible. Get a job, or at least a complex, demanding volunteer position. Look for ways to challenge yourself academically beyond what’s immediately available at school. You may have disabilities, but a lot of things come fairly easy to you, and you need to learn what it's like to do the harder things well.
- Try to meet other disabled kids and adults. Don’t try to act like you’re not one of them, because no matter what anyone says and regardless of what you’ve convinced yourself, you are. Plus, contrary to what you think now, lots of other disabled people are fun, amazing, and great to be around.
- Your disability aside, you have a lot of advantages. Don’t feel bad about using them, but don’t coast on them.
Like I said, you are doing fine. But “fine” doesn’t have to be the highest achievement you aim for. Just because you are disabled, doesn’t mean you can’t do better. Be happy, but don’t feel you have to settle for “fine” forever.
Friday, July 4, 2014
Picture Of The Day
I don’t know who created this image in the first place, but it’s been kicking around for quite awhile, in various magazines, newsletters, and disability-related websites. It is one of the first disability rights images I remember seeing.
Independence Checklist: Followup
I’ve already found another item to add to the Independence Checklist, inspired by a blog post by Smart Ass Cripple:
Do you get to decide who sees you naked?
Independence Checklist
Many years ago, I attended a disability conference where a speaker described a sort of checklist people with disabilities can use to figure out whether they are truly “independent”. The idea was that there are many disability service and support models that include certain “freedoms” and “choices” that feel like independence, but which can easily mask a fundamentally dependent situation. The speaker asserted that his checklist were indicators of genuine independence, not just superficial “privileges”. I can’t remember who the speaker was, or recall every item on his list.
The checklist that follows is my attempt to re-create and expand on the idea. Are you “living independently"?
- Do you have a lock for the door to the place you live, where only you or someone you choose have the key? Do people have to knock and ask permission to visit you?
- Are you responsible for your own finances, regardless of where the money comes from?
- Do you own your eating utensils, towels and washcloths, bedsheets and pillowcases?
- If you live with another person or people, are they people you chose to live with, and who chose to live with you?
- Do your helpers mostly work around your schedule, or are your routines mostly determined by your helpers’ schedules?
- If you did several things people disapproved of, would you risk losing services you need?
- Would you be permitted to eat Oreo cookies for dinner, if you wanted to? (I call this The Seinfeld Condition … after one of comedian Jerry Seinfeld’s famous bits).
- Would you be able to make a spur-of-the-moment trip to a local convenience store, if you got a sudden, intense, 3 AM craving for Beef Jerky?
- If you and another consenting adult wanted to have sex or get married, could you do so?
- Do you have more or less the same rights and responsibilities as non-disabled people your age?
- If some of your rights and responsibilities are controlled by other people, is that by your choice?
Notice that none of these items are about where you live, whether you have money and from where, whether or not you need or have everyday self-care help from others, or how physically or mentally capable you are. A quadriplegic can live independently. So, to some extent, can someone with significant intellectual disability. And, someone with fairly mild disabilities can just as easily live very dependently, their lives largely controlled and regulated by others.
What other items would you include on your “Independent Living Checklist”?
The checklist that follows is my attempt to re-create and expand on the idea. Are you “living independently"?
- Do you have a lock for the door to the place you live, where only you or someone you choose have the key? Do people have to knock and ask permission to visit you?
- Are you responsible for your own finances, regardless of where the money comes from?
- Do you own your eating utensils, towels and washcloths, bedsheets and pillowcases?
- If you live with another person or people, are they people you chose to live with, and who chose to live with you?
- Do your helpers mostly work around your schedule, or are your routines mostly determined by your helpers’ schedules?
- If you did several things people disapproved of, would you risk losing services you need?
- Would you be permitted to eat Oreo cookies for dinner, if you wanted to? (I call this The Seinfeld Condition … after one of comedian Jerry Seinfeld’s famous bits).
- Would you be able to make a spur-of-the-moment trip to a local convenience store, if you got a sudden, intense, 3 AM craving for Beef Jerky?
- If you and another consenting adult wanted to have sex or get married, could you do so?
- Do you have more or less the same rights and responsibilities as non-disabled people your age?
- If some of your rights and responsibilities are controlled by other people, is that by your choice?
Notice that none of these items are about where you live, whether you have money and from where, whether or not you need or have everyday self-care help from others, or how physically or mentally capable you are. A quadriplegic can live independently. So, to some extent, can someone with significant intellectual disability. And, someone with fairly mild disabilities can just as easily live very dependently, their lives largely controlled and regulated by others.
What other items would you include on your “Independent Living Checklist”?
Wednesday, July 2, 2014
Music For A Travel Day
I’m on the road today, so no posting, except for this, one of may all-time favorite songs, by Jonathan Richman and The Modern Lovers.
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