Telethons, characters, and fundamentals.
Sunday, August 31, 2014
Monday, September 1, 2014
Tuesday, September 2, 2014
Wednesday, September 3, 2014
Thursday, September 4, 2014
Friday, September 5, 2014
Sunday, September 7, 2014
Friday, September 5, 2014
Podcast Update
At the rate I'm going, I anticipate uploading the next Disability.TV podcast sometime tomorrow.
In the meantime, here are a few links about the subject of tomorrow’s podcast … the new version of “Ironside”:
Here’s an excerpt from TV critic Alan Sepinwall’s brief review:
"This Ironside is a hunk (the bullet wound that took the use of his legs left him functional in other areas) and an iconoclast with his own special headquarters and team of detectives who get to play by their own rules and give heartburn to the traditional NYPD command. Despite a committed, angry performance from Underwood, and a very good one from Brent Sexton as Ironside's grief-stricken ex-partner, a lot of the show plays like a parody of hard-boiled cop show cliches.”
Check in tomorrow to see where I agree and disagree, a little less than a year later.
Thursday, September 4, 2014
Recommended: "Our Birth Story"
One of the gulfs between disabled people born with their disabilities, and parents of kids with disabilities, is how we think about the birth itself and that first discovery of disability. While all of us with disabilities can understand, intellectually, that it had to be one of life’s worst moments for our parents, we don’t want to dwell on that, because somehow that implies that we are one of the worst things to happen to our parents. We know that's not true either, but that can be hard to remember, given how many parents talk about it.
Meanwhile, special needs parents crave some recognition and understanding about what they went through … a connection and empathy that might be impossible for other parents to give. Even we, their children, can’t fully connect, because we have our own complicated issues with “that day” in the hospital.
All of which is just an overlong introduction to an extraordinary podcast episode I just listened to. It is called “Our Birth Story”, and it is the latest installment of Sawbones: A Marital Tour Of Misguided Medicine.
Sawbones is hosted by Justin and Sydnee McElroy, husband and wife. Justin is a podcaster and comedian, and Sydnee is a physician. Together, they take a humorous look at some of the bizarre twists and turns of medicine throughout history. Lately, several of their shows have been related to reproduction and birth, because Sydnee was pregnant with their first child. This episode is a departure because it is about their actual birth experience, and it is only funny in the sense that these two can’t help being funny … otherwise it is an amazingly vivid description of what happens to parents when things don't go according to plan in childbirth.
Their little girl Charlie is fine, so their experience isn’t a direct parallel to disability. However, I really felt that regardless of the ultimate outcome, Justin and Sydnee had a lot to say that I’m sure parents of kids with disabilities can relate to, especially the “white knuckle terror” of knowing something is wrong and being powerless to do anything about it … and not even being told what’s happening. At the same time, Justin and Sydnee are smart and level-headed people, so they are able to view their experiences with at least some objectivity, which makes the podcast bearable and informative.
Listening in my car, I though a lot about my parents and their "that day" ... including my father, who was a Pediatrician.
Listening in my car, I though a lot about my parents and their "that day" ... including my father, who was a Pediatrician.
I would be especially interested in what any special needs parents think of the podcast.
5 Fundamentals Of Disability Awareness
There are scores, maybe hundreds of numbered lists out there on disability etiquette and awareness. So what I offer here is hardly original. Just consider it another attempt to cut through all the clutter and inside debate on the subject, and offer simple, unambiguous directives on how non-disabled people should conduct themselves regarding people with disabilities.
1. Keep it simple ... just say "Disabled"
Words or phrases like "differently abled" and "special needs", meant to sound less negative, are more trouble than they are worth. "Disability" may sound bad, but it has become widely used and generic enough that the word carries a neutral, purely functional tone. Most disabled people are fine with the term. Respect each individual's preference, but when in doubt, "disabled" and "disability" will do.
2. Ponder the phrase, "the dignity of risk"
There are worse things in life than disappointment. Experiences lost because they were never tried add up over the years, and are as tragic to disabled people as any accident or failure. As disabled people, our ultimate goal isn't always to prevent any bad thing from ever happening to us, and most of us are capable of assessing risk and deciding for ourselves what is worth it and what isn't. Protecting us so much that we loose meaningful choice in life also robs us of our dignity, which does more harm than short-term pains or setbacks.
3. Disabled people are people
We are not symbols. We are not pets. We are not angels come to earth. We are not here to teach you lessons about gratitude or humility. We are not empty vessels into which you can pour all of your affection, faith, fears, revulsions, morbid fascinations, or theories of life. We are people, with our own points of view, motives, and self-awareness.
4. Accommodations and supports are equalizers, not privileges
It may seem like disabled people get a lot of special perks and benefits, but things like disabled parking spaces, flexible work schedules, income support, and personal care assistance are designed to level the playing field for disabled people, not make things easy for them at everyone else's expense. "Equal" does not mean "The Same". In order to reach equality, people with disabilities, in particular, often need to be treated differently.
5. If you think disability prejudice is harmless, benign, and not a big deal, think again
There is probably less hatred of disabled people than there is for other oppressed minorities, but the effect of well-meaning ignorance can be just as harmful as deliberate cruelty. Mistaken and misunderstood beliefs about disabilities affect how programs are designed, objectify us in dozens of ways, and rob us of agency. Plus, you don't have to go far back in history to find broad, well-meaning approval of practices like putting kids with disabilities away in institutions, sterilization without consent, systematically denying education or work, and even killing in the name of compassion. Meanwhile, people who are normally downright fastidious about not using offensive language still seem to think it's okay to make crass references to "retards". Calling someone "insane" is still the ultimate put-down and invalidator. And it is actually becoming more common to be snarky about people who use mobility scooters, who are apparently all lazy old geezers.
Wednesday, September 3, 2014
Normal People Sick
Not feeling up to snuff today, so this is all the blogging you’re going to get until tomorrow at the soonest.
Tuesday, September 2, 2014
Telethon Thoughts
The Disability Visibility Project blog ran a great series over the last few days about Jerry Lewis’ Muscular Dystrophy Telethon, with articles by disability activists reflecting on their strong and sometimes personal feelings about the telethon and using pity to raise money for disability causes. Each one is well worth reading and exploring further:
Disability Visibility Project - August 29, 2014
Disability Visibility Project - August 30, 2014
Disability Visibility Project - August 31, 2014
Disability Visibility Project - September 1, 2014
Protests against the MDA Telethon started right around the time I woke up to the disability rights movement, and it was one of the first demonstrations I remember of the fact that disability rights is not an easy, simple road. It involves a lot of “biting the hand that feeds you”, and many aspects of disability rights thinking do not come naturally. It’s one thing to observe that disabled people deserve equal rights … that’s something everyone should know instinctively. Unless you have a disability yourself, you have to think actively and practice deliberate empathy to understand how a well-intended fundraiser can be not only distasteful, but even harmful. On the other hand, once you do see it, especially if you have a disability, it’s impossible thereafter not to see it.
I had a conversation this weekend about the Ice Bucket Challenge, and afterwards I realized another thing that bothers me about so many disability fundraising efforts.
I don’t really object to raising money for medical research into disabling conditions. I resent the fact that the general public is consistently more excited about supporting those efforts than they ever are about supporting equal rights, equal access, and the nuts-and-bolts stuff disabled people need to live decent lives with our disabilities. It’s strange, when you think about it. “Medical Research” is so abstract, and outcomes so fleeting, while building ramps and buying people speech synthesizers is entirely concrete, with immediate payoff. You would think all us practical-minded Americans would rather give to pay for things people can use, than to provide open-ended funding for fuzzy dreams. Yet, it’s exactly the opposite.
As one of my favorite bloggers often says, “People Is Weird”.
(P.S.: ... says the guy with a PayPal donation button on his blog!)
Monday, September 1, 2014
This
"Old Pain I’m used to: the tightness in my hips when I don’t stretch in the morning, the pressure where my legs meet my back when I walk too far. It’s not that I don’t feel it; it’s just been there for so long that I know not to get nervous about it anymore. New Pain is where it gets scary because it stops having a name. I can’t immediately catalog it or diagnose it as benign. At best, disability allows you to create a tenuous peace with your body, and anytime it decides to violate that mutual agreement can be terrifying. You take the time to figure it out — what it likes and dislikes, where it functions best — and stick to that routine, until New Pain reminds you that you’re never quite going to have this figured out.” — Know Me Where It Hurts: Sex, Kink, and Cerebral Palsy
It's only part of a longer, quite excellent piece by a woman with Cerebral Palsy, but I related to this bit so strongly that I just had to take note of it.
This.
Very much this.
Via the Disability Fashion Project Tumblr blog.
Buy It: "The West Wing"
"The West Wing” series is about so many things that its extended depictions of disability take their natural place as just one of many interlocking story lines. President Josiah Bartlett’s “hidden” Multiple Sclerosis echoes the real President Roosevelt’s imperfectly obscured Polio. Although the later years of the show aren’t as good as the first few, the disability depiction improves, showing the President’s progressing disability both as a legitimate personal crisis, and a manageable one that only occasionally interferes with his conduct of “the job”.
It’s such a bonus to that we get another disability depiction, in the recurring character Joey Lucas, the political pollster who is deaf, played by Marlee Matlin. Her introductory scene, in which a drunk Josh Lyman struggles to understand that she is deaf, and the guy with her is her Sign Language Interpreter, is one of the funniest scenes in the entire series.
Two Views Of Autism
Julia Belluz, Vox.com - August 28, 2014
"What's more, autism spectrum disorders — which causes social impairment and stifles people's ability to communicate — still represents significant suffering globally. 'The burden of disease caused by the disorders is not only high in children but continues throughout the lifespan into adulthood,' says Baxter. In 2010, autism spectrum disorders caused 7.7 million person-years of healthy life lost, around the world."
Two of Vox.com's strengths are explaining things, and dampening hysteria with actual information. I am glad to see them take on the supposed explosive growth of autism. I would love even more for Vox.com do a followup addressing the radically different conceptions of autism that most autistic people, and those of us who read and write disability blogs know about, but most people don’t.
“Suffering” and “healthy life lost” provide an unusually clear picture of the divide between two fundamentally different ways of understanding autism.
The traditional, medical view is that autistic people "suffer from” autism. And because autism apparently means autistic people have no personalities or points of view of their own, families suffer even more, from the stress and anguish of having kids with autism. If they really thought about it, most people would probably say that “autistic” and “healthy” are incompatible concepts, and that autism is one of the most dread of diseases, the very opposite of, "I don't care if it's a boy or a girl. I just want it to be healthy!"
The Neurodiversity or Autism Acceptance views of autism do not deny that autism exists or that it is difficult. Nor do they deny that there is suffering. The difference is where the suffering is thought to come from. In this alternative view, autism is not always inherently painful or debilitating. Rather, it is non-autistic people's lack of understanding of autism and, their pathologizing approaches to it, that cause autistic people to suffer most.
I wonder if and when these different paradigms of autism … and of other disabilities, too … will become more widely known. It seems like an important thing to at least be aware of.
Sunday, August 31, 2014
Disabled TV Character Face-Off - Survey
Weekly Wrap-Up
Characters, questions, and ice buckets.
Sunday, August 24, 2014
Monday, August 25, 2014
Tuesday, August 26, 2014
Wednesday, August 27, 2014
Thursday, August 28, 2014
Friday, August 29, 2014
Saturday, August 30, 2014
Saturday, August 30, 2014
Video Of The Day
So many amputees make it look easy, so it’s good to be reminded that there are still very real, practical impairments involved.
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