“You listen to me grasshopper. There is going to be a million Buddy Garritys out there, who will try to tell you aren't worth anything. And you just gotta look 'em right in the eye and flip him the bird … ‘Cause the Buddy Garritys of this world, they’re a cancer to you and me.” — Herc talking to Jason, Friday Night Lights.
Friday, July 11, 2014
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A Little Moxie Summer Blog Hop - "Talking Raw, Talking Real: Challenges Related to Disability"
Most of the time, the challenges related to disability aren’t about disability alone. In my experience, and observing the experience of others, 75% of the time, it's actually about disability and something else:
Social stigma … Everything from mild awkwardness and ignorant comments, to open ridicule and bullying. They invade our space when we least expect it, an it hurts in a very personal way. In some ways, it’s the least significant problem we face, but in other ways, it’s the most painful.
Discrimination … Prejudice put into action, where it concretely affects our mobility, inclusion, and opportunities. People can think what they like about disabled people, but prejudice causes real, lasting harm when we lose a job opportunity because of it.
Poverty … Money can’t buy happiness, but it can buy off a lot of the hardships of many kinds of disabilities. Money can buy ramps, lift vans, decent wheelchairs, tutors and therapists, and pay other people to help us do the things we can’t do for ourselves. The flip side is that when we don’t have money, everything about our disabilities becomes exponentially harder.
Segregation … Being cordoned off into “special” programs of any kind may seem to have superficial advantages, but the harm is deeper and longer term. Separate is not only unequal, it is artificial, inauthentic, and it provides cover for neglect and abuse. Plus, segregated programs are almost always maintained for the convenience and comfort of people other than the actual disabled people they’re supposed to serve.
Lack of agency … In little ways and big, we are often treated as something less than complete human beings. Most people don’t realize they are doing it, and very few believe we are literally inferior. Yet, we are treated like a bundle of symptoms and behaviors. Adults are treated like children or tweens. People speak to the person with us instead of directly to us. Even our families sometimes seem to forget that we are people ... not symbols or tests of their moral character. In many ways, the biggest challenge of disability is simply to assert and maintain our basic personhood.
Disabilities impose themselves every day, and occasionally they can be very sharp and punishing. But disabilities are different and distinct from the hardships associated with them that are imposed from the outside. The good news is that most of them are easier to fix, both personally and systemically, than most disabilities. It doesn’t always seem that way, and lots of disabled people would disagree, I think, but I believe it is true.
Disabilities are largely beyond our control. Human behavior is not. The real challenges of disability are the “… and other things” that go along with it.
Thursday, July 10, 2014
Lexicon: "Normal People Sick"
An informal way of differentiating between acute illness, and chronic illness or disability. As in, “This isn't the usual fatigue, I'm normal people sick!” Short-term illness that anyone can experience, not illness that is chronic or a side effect of a long-term condition or disability. The term also helps to underscore the idea that disability is not the same thing as illness or sickness. One can be disabled and healthy, or disabled and temporarily sick. A paraplegic (disabled) can, for a short period of time, have the flu (normal people sick). It can be especially helpful and clarifying for people with chronic pain or chronic illness, by identifying symptoms that can be readily cured or relieved, (like appendicitis or a cold), as opposed to symptoms that are chronic, incurable, or that can at best be managed, (like asthma, or joint pain from arthritis) ... a.k.a. “Regular People Sick”.
Comments? Clarifications? Corrections? Click below and have at it!
Comments? Clarifications? Corrections? Click below and have at it!
A Small Point About "Friday Night Lights"
On a whim, I decided to re-watch “Friday Night Lights”, the under-watched and highly rated drama about high school football in rural Texas, that included a character, Jason Street, adjusting to on on-field spinal cord injury. I blogged about him before a couple of times when I was watching the show for the first time. This time, I noticed a seemingly small point that I think actually says something pretty important about how most people view disability.
Early in the first season … soon after Street's injury ... his girlfriend, Lyla Garrity, chatters on and on about all of the spinal cord injury treatments and success stories she found on the Internet. It seems like a realistic plot point. In real life, a young injured man’s girlfriend, mother, or father are surely going to Google “spinal cord injury” to find out what can be done … by which I mean what can be done to repair it.
I wonder though, why doesn’t Lyla Google “living with spinal cord injury”? I can understand her not thinking to do so early on, but even later, after it becomes clear that Jason won’t walk again, nether Lyla, nor Jason or anyone else does any apparent research to learn about how people with spinal cord injury live. Jason learns some of these things through his rehab experience, where he also meets some bad-ass guys in wheelchairs who give him a more nuanced perspective on things. But nobody else seems to bring the same level of resourcefulness, dedication, and hopefulness to the task of helping Jason live a full life, as they did to the task of curing him. Once Lyla realizes that Jason won’t walk again, her fervor wanes. She doesn’t immediately drop him, and when they break up she’s conflicted about it, but she was massively fired up when the goal was to cure Jason, yet never mustered any enthusiasm for helping him live with his injury.
No matter what we think and say about it, in general, society still views curing or at least masking a disability as a mission, and adjusting to and living with a disability a compromise. One inspires enthusiasm. The other, resignation. I understand enthusiasm for recovery, especially while there’s still some reasonable hope for it. But why don’t more people bring the same kind of excitement to exploring life with a disability?
This little scene also raises another question for disability bloggers and blog readers. We know how much great stuff there is on the Internet, by and for people with disabilities and their families, demonstrating every conceivable perception of every disability imaginable. The question is, do people who most need to read our stuff actually find it? Or, is the problem that people new to disability aren't ready to explore disability life and culture, even if they do run across it?
More about "Friday Night Lights" in Disability Thinking:
Wednesday, July 9, 2014
Handicapped Parking
Chelsea Rarrick, WTVR Channel 6 Richmond, VA - July 9, 2014
This looks like a fairly typical local news story about disabled / handicapped parking … maybe a bit better than usual. It seems like it covers two sides of the same coin … people who misuse handicapped parking permits, and people who wrongly assume that any driver who walks away from a car parked in a handicapped spot must be misusing a handicapped parking permit.
One thing I think is missing from discussions about handicapped parking is that there are several distinct ways it benefits disabled people.
The most obvious is that it allows us to park closer to the entrance of the place we are visiting, so we don’t have to wheel or walk as far as we would if we had to park further away. For some, it is important because the way we move is harder than walking. For others, it’s that we are limited by pain or endurance in how far we can walk without a significant rest.
A somewhat different benefit is that when handicapped spaces are present, it reduces the chance that we won’t find anywhere at all to park. For many of us, just going out is big production that consumes a lot of physical and mental energy. It’s hard to explain to non-disabled people how demoralizing it is to get yourself out to your car, drive to the place you need to visit, and then find that because there is no parking available of any kind, you will have to go home again empty handed. And, your will probably have to do it all over again soon, because you still have those errands to finish. This is less likely to happen if the right number of handicapped spaces are properly placed and marked.
Knowing that handicapped parking spaces are available gives us added assurance that we can go out and successfully complete our errands, without becoming so exhausted that we can’t move for days. By extension then, if handicapped parking were to be eliminated somehow, or if a disabled person lost their permit for some reason, it would cause us to go out less, and be more “home bound” than necessary.
Put another way, handicapped parking gives both practical and theoretical benefits. It makes a more active life physically possible, and psychologically a little less scary.
So, yes, we REALLY DO need disabled parking.
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
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