From the Hypermobile Tumblr blog, via Wheelie Wifee.
Tuesday, May 13, 2014
Yet Another Service Dog Problem
KTVU.com - May 12, 2014
Annnnd … again with the service animals!
I really don’t understand this. Service animals are allowed just about everyone people can go, and have been for years, decades even. If there are very specific exceptions to that, maybe involving aircraft safety, then those exceptions should be stated very clearly and declared whenever the issue comes up.
Are service dogs allowed in “bulkhead” seating or not? If they aren’t, maybe because they can’t be seat belted and could be hurled around a cabin in severe turbulence, then say so upfront. If it’s not a problem, then make that clear to all airline employees.
This really isn’t difficult. The only reason this kind of crap keeps happening is that companies haven’t felt it important enough to send clear messages to their employees. If, on the other hand, the companies really don’t agree with the law, then let them have it out with the Justice Department, or propose reforms. But don’t just decide not to follow the law, and don’t just let service employees make the call.
Monday, May 12, 2014
Work In Progress ... What Do You Think?
I am going to start posting short previews of blog posts I'm working on. If you see a topic you are interested in, feel free to comment and I may cite your comments or ideas in the finished post.
First up:
What do people mean when they say, "My disability doesn't define me"? Or, from another perspective, "She doesn't let disability define her"?
What do we mean by "define"? What negative experiences and feelings do we think we are avoiding by not being "defined" by our disabilities? Is it mainly about not liking being labeled, or is there more to it than that?
About Our Bodies
Natalie E. Illum, Guest Writer, The Body Is Not An Apology - April 28, 2014
This is another great article on the very tricky, hard to explain, but absolutely crucial issue of disabled people learning to recognize and then shed shame about our bodies.
Don’t let the art world and poetry slam setting of the essay distract you. You don’t have to be a poet or a performance artist to grapple with the same issues Natalie Illum did, or to make the progress she has. One part of her story that I think might be essential, though, is having a friend or even just a casual acquaintance ask the right question or say the right thing at the right moment that helps penetrate the walls we build up around us and get to the kernel of the issue. Do we love, do we accept, do we have any positive feelings at all about our bodies, or not?
For most of my life, I assumed that it was enough to appreciate my own mind, and sort of forget about my body. Now I’m not so sure that’s a choice you have to make, just because you have physical disabilities. It may not even be a sustainable choice. Fortunately, it seems like one of the few things you can change about yourself, without needing other people to change as well. You can just start appreciating your body as it is, and having some fun with it’s unusual shapes and angles. That positivity can often rub off on others, and they in turn will be more positive about your appearance. But even if they don’t, it doesn’t really matter because you made the key change in your own head.
Ending Ableism: Part 3 - Asshole Ableism
This is the last entry in my second series on Ableism, in which I offer some practical tips for people who want to know how they can battle different forms of disability discrimination or “ableism”. I have already suggested steps for fighting Well-Meaning Ableism and Systemic Ableism. Today, it’s what I call, “Asshole Ableism” … a.k.a., the really mean stuff, and the very dangerous stuff.
1. Confront, or at least give a very cold shoulder to anyone who tries to get you to join them in making fun of disabled people, using ableist slurs, or expressing disgust or resentment of disabled people.
Don't underestimate the power of the cold shoulder, especially for people who think they’re being hilarious. A disapproving look and no laugh can accomplish a lot. Example: Shaq’s Instagram photo mocking a disabled man’s unusual facial features.
2. Push back against people who claim that disabled peoples’ needs cost too much and take too much away from “normal” people.
People don't mind approving help for disabled people, until they think more for disabled people means less for everyone else. It's almost always a false choice, and sometimes, bureaucrats and politicians with an agenda will purposefully pit disabled peoples' needs against the needs of the "average citizen". Example: School budget debates where people blame Special Education mandates for cuts in music programs, football, advance placement classes, or whatever other programs people care about.
3. Be on alert for regressively ableist ideas that have the potential to gain renewed popularity.
Some people just seem attracted to out of date ideas ... sort of like people who love antiques. They think it's clever and refreshing to reanimate dead ideas. Example: Eugenics ... in which people argue that disabled people shouldn't be born and shouldn't reproduce because they are bad for the human gene pool. Or, re-segregation, where families and professionals might start to argue that separate, institutional services have gotten a bad rap, and are preferable to the stigma and harsh competition of mainstream life. Tell them that their ideas aren’t new or brave … they were bad in the old days and they’re bad now.
4. Learn about how disabled people have been treated throughout history … especially some of the ideas and policies that were once thought to be “progressive” or “humane”.
People are much better today at being polite and hiding or obscuring what they really think about things. It wasn’t long ago that otherwise decent, respectable, even compassionate people supported widespread institutionalization, forced sterilization, “mercy killing” as public policy. Remembering is a defense for the future.
5. Call out arguments that suggest that there should be different standards of treatment and civil rights for people with “certain kinds” of disabilities.
I've heard it dozens of times ... "Everything you're saying is right for disabled people like you, Andrew, but I'm talking about really disabled people." Example: Disability service providers who imply that disability rights and independent living values don’t really apply to intellectually disabled people, justifying paying below minimum wage and maintaining sheltered, segregated services. Different disabilities call for different approaches, but human rights and human agency are universal.
As you can see, most of the actions I suggest for Asshole Ableism are rhetorical. It goes without saying that you may find moments when you can actually cast a meaningful vote, too … such as in a school budget ballot or an assisted suicide referendum. Most often, though, confronting Asshole Ableism simply means confronting assholes who are ableist. Since they so seldom pay a price for their assholeism, a little bit of confrontation, or just passive resistance and refusal to “go along" can be quite powerful.
Sunday, May 11, 2014
Photo Of The Day
I have posted this before, and I don’t even know if it’s an actual motherhood photo, but it feels appropriate for Mother’s Day.
From the Rough Pix Tumblr blog, via disABILITYaware.
Weekly Wrap-Up
Sunday, May 4, 2014
Monday, May 5, 2014
Wednesday, May 7, 2014
Thursday, May 8, 2014
Friday, May 9, 2014
Saturday, May 10, 2014
Happy Mother's Day!
One of the things I will always appreciate about my mother, Claire, is that she always treated me like a person.
She used to say that she enjoyed her two kids much more when we got older because you can't have real conversations with a baby. As we got older, we got more interesting … not easier mind you … more engaging. In other words, at some point we became people to her. I never felt like Mom saw me as anything more or less than a person, never a symbol, a message, a burden, or a reward. In her eyes, I didn’t represent or mean anything but myself.
At the same time, Mom was definitely the sort of person who thought that individuals were important mainly in terms of what they did. She wasn't a right winger or a capitalist, so she didn't care that much about whether people were "productive" or "successful", but rather that everyone should fulfill their potential and add something to the world.
Mom didn’t have much of a direct influence on my disability consciousness, because I don’t think she ever adopted any distinct personal theory of disability. I think for her, disability was just a thing that happened, not something you had to think about much beyond practicalities. That was pretty much how I viewed my disabilities until well into adulthood. And even though I now wrestle with the social and political aspects of disability, personally, I still tend to think of my own disabilities in purely practical terms.
That's fine. Mom helped me become a person, and appreciated me as a person, which gave me a strong base to build on. I think that's the best thing parents of a disabled child can do. I don’t spend a lot of time these days actively missing Mom, but I often wish I could discuss ideas about disability with her now. I wonder what she would think? I do know it would be a great conversation.
Here are some of my favorite photos of my mother:
Mom and her three siblings. From the left: Dana, Barbara, Claire (Mom), and Kit.
Mom and Dad (Peter), I think shortly before being married.
The classic family portrait: My brother Ian, Cleopatra (the dog), Mom, baby Andrew (me!), Dad.
The Fearon siblings, all grown up: Dana, Kit (back), Claire (Mom), and Barbara.
Mom and my brother’s dog, Opus … A.K.A., Mom’s granddaughter.
Mom … Claire Anne Pulrang, 1926 - 1997
Saturday, May 10, 2014
"Parenthood" ... Too Many Feelings
Todd VanDerWerff, AV Club - March 21, 2014
I have finally finished watching the recently concluded 5th season of the TV show “Parenthood”. It’s pretty good television ... not the show's best run, but better in the end than I thought when the season started last Fall. The show is high-grade, mainstream comedy-drama, with a large ensemble of good actors, and a few great ones.
What draws me back to “Parenthood” though … other than wanting to beat up any dude who makes Amber cry … is its long-form exploration of Asberger’s Syndrome. Off and on throughout the series, we have been given deep, fairly nuanced insight into how teenager Max Braverman's family responds to his Asberger’s, and also into Max’s own point of view as a real, breathing, three-dimensional person with Asberger’s. This season, show runner Jason Katims took it a step further and introduced Hank, an adult professional photographer who takes to Max, and Max to him, and partly through knowing Max comes to realize that he probably has Asberger’s, too.
One of the best things about Season 5 was mapping the complex connections between Max and Hank's shared experiences of Asberger's. Hank has a natural instinct for how to negotiate Max's one-track mind and stubbornness. In some ways, he's better at dealing with Max than Max's parents are. Max, in turn, helps Hank cut through some of the BS in his own life, because Max always says exactly what he thinks, and he thinks quite logically ... which produces great moments of clarity for Hank, especially when the subject is his clumsy love life. Of course, Hank also learns more passively from Max about what Asberger's is, and watching the similarities and differences between Max's habits and his own helps him come to grips with Asberger's ... in my opinion far more effectively than the rather bland advice handed out by the show's supposed Asberger's expert character, Dr. Pelican.
Max's own story came to a dramatic head later in the season, when in the wake of a school trip in which he was ridiculed and called a "freak" by classmates, he had a "meltdown" and for the second time in the whole series, he and his parents spoke openly and plainly about the fact that Max has Asberger's. Todd VanDerWerff of The AV Club writes about the scene in his review of the episode:
“… Plus, Parenthood is capable of scenes like the one on the car ride back from Sacramento in tonight’s episode, in which via bits and pieces, Max’s story of why he threw a tantrum in the middle of the class trip to Sutter’s Mill came out. One of the other kids started to make fun of him and told him he was a freak, and everybody else laughed at him. Instead of brushing it off, as Mr. Knight says he usually does, he had the very understandable reaction of, y’know, not wanting everybody to laugh at him and freaked out. But what rang true here wasn’t just Max’s reaction to the kids making fun of him; it was Adam and Kristina’s powerlessness to do anything about it. At one point, Adam calls the kid who made fun of Max an “asshole,” and he’s right about that, but he’s also talking about a 14-year-old boy. If Adam actually tried to do anything about it, he’d get thrown in jail."
As VanDerWerff notes a bit later, this scene effectively demonstrates that Max's Asberger's behaviors aren't so much symptoms or disorders as they are a different language. Far from nonsensical, even Max's "meltdowns" have a logic to them. His odd affect, obsessions, and sudden spurts of emotion all have reasons, even if Adam and Kristina … and certainly his teachers and classmates … still have a hard time reading them, or even acknowledging them.
"This is where the show is on much firmer ground handling Max’s Asperger’s: When he gets into a situation he doesn’t know how to handle, he can sometimes shut down. That’s happened less and less as the show has gone on (as Adam says to Mr. Knight), but where other kids might throw a punch or come up with some sort of forced, witty retort or even just retreat entirely and try to avoid the bully, Max is just as likely to unleash his emotions seemingly at random, in a way that’s scary to those who aren’t used to it, like Mr. Knight. Jason Katims has based at least some of Max on his own son, and while fiction and reality will necessarily diverge, it’s in scenes like this one or the scenes featuring Max from “Let’s Be Mad Together” where the show does some of its finest work. So long as these stories are about Adam, Kristina, and Max all working together to navigate daily life, as opposed to, like, Adam and Kristina starting a charter school, this is still one of the more effective portrayals of parenting a child on the spectrum on TV (and maybe the only one).”
I agree. In fact, I even found myself accepting the whole Charter School idea, which is testament to the show’s persuasiveness because I usually object to the idea of “let’s leave and start our own school” response to public school’s ineptness with disabled students.
However, this otherwise perceptive Onion AV Club review left out one important detail about the emotionally charged driving home scene. I am astounded that VanDerWerff doesn't so much as mention how the scene ends ... with an incident I found extremely moving but also profoundly upsetting. Bear with me, because I need to describe this step by step.
As Max, at length, tells Adam and Kristina about the kids making fun of him on the school trip, he becomes more and more upset, first asking, “Why do all the other kids hate me? … Is it because I’m weird?”
Kristina’s initial explanation is pretty good … great actually:
“Honey, you’re not weird, okay? I just think sometimes, I don’t know, kids don’t understand your Asberger’s and they misinterpret it as being weird or whatever”.
That’s a correct and perceptive explanation. Of course, we also get the other side of the coin in Adam’s response, which is that the kids who bullied Max are “assholes”, which is satisfying in another way. When Max tells them that one of the kids peed in his canteen, Adam says, without a moment’s pause, “I’ll kill him,” again an appropriate response, at least in the context of a heartbreaking talk with his suffering, humiliated son.
Max's emotions are obviously spinning and spiraling now. His oddly logical mind has finally put the pieces together, and come to realize that despite all the feel-good rhetoric and theory, Asberger’s has a definite downside that he can’t will away. Adam and Kristina sit in the front seats of their minivan, poleaxed, suffering with Max’s suffering, but unable at first to respond.
Then all at once, Krisina undoes her seatbelt and climbs into the back seat of the minivan. This act beautifully and uniquely demonstrates her desperation, because visually, we are used to seeing this kind of move by irresponsible teen characters, not by uber-Mom adults like Kristina Braverman. Now seated next to Max, she wraps him in a hug … the only response she has, and is determined to give. For a second, it is very moving.
The problem is Max is that Autistic, and he has trouble with being touched and handled by other people. When he’s upset to begin with, touching and hugging doesn’t comfort him, it agitates him more. Max immediately struggles against his mother’s hug, and clearly, urgently says, “I don’t like being hugged!” To which Kristina replies, just as clearly, “I don’t care right now.”
Let's let that sink in for a moment.
When an Autistic person says, “I don’t like being touched, don’t touch me!”, are they actually saying, “Please hug me to show that you love me?” or, “I really want to be hugged but I don’t know how to say it so don’t listen to my words?” That’s a nice thought, and would be convenient for parents who long to hug their children, but somehow I doubt it.
Since Autism often involves significant differences from the typical way people neurologically process touch, connection, and personal space, is Max unfeelingly rejecting his mother’s love, or is he actually trying to defend his personal boundaries? Is Kristina invading his personal space … his bodily integrity … and saying that, at long last, she “doesn’t care” because dammit, she’s so very sad right now?
I wonder if this is meant to be some kind of response to Max’s telling Kristina earlier in the episode that he doesn’t want her to chaperone the school trip. The weird thing is, when he said that, Kristina looked genuinely mystified and asked why. Seriously? Kristina doesn’t have a wild guess as to why a teenaged boy doesn’t want his Mom chaperoning a school trip? If he was a “normal” teen, she wouldn’t have to ask. Kristina loves Max totally, but even she has him in some “other” category apart from “son”, “male”, and “teenager”.
But this is consistent with how Adam and Kristina have been portrayed all along on “Parenthood”. In many ways, they are ideal parents of a kid on the spectrum. They are smart, or at least well read, and they have the patience and resources to give Max the best possible chance to bloom and maybe become a relative success like Hank, Yet, Adam and Kristina's rather pronounced need for approval from their kids puts them in a rather difficult spot, since 99% of the time, Max can't give them the kind of feedback they desperately crave.
All of this just makes the hugging scene even more disturbing to me. I find I can’t just avoid asking the question … Did we just see Max being violated by his Mother? There was nothing at all sexual about her hug, but Max clearly and emphatically said he didn’t want to be hugged right then, and right then Kristina said, “I don’t care”, and kept on hugging him, as if her need and her physical strength could overcome her understanding of Max’s unhappiness. Look, I’m all for the idea that sometimes, teenagers should put their preferences aside and show some love to their parents, even when they don’t feel like it, but part of Max’s condition is a sensitivity to touch, and, as the saying goes, no means no.
"I don't like being hugged!"
"I don't care."
Let me be clear. I didn't go digging for this. It hit me on the head like a 2 x 4.
And yet, watching the scene again, Max does calm down. He’s crying, but in the end I don’t think it’s because he’s being held. He’s crying because although he’s known for several years now that he has Asberger’s, he has just realized that in a way, he is weird, and “even the nice people” think it’s okay and natural to make fun of weird people. Asberger’s also means Max is specifically ill-equipped to fathom the social stigma or effectively defuse it. Maybe Kristina’s timing and gestures here were perfect for the moment.
Nevertheless, I worry about the message this might send. Don’t listen to your autistic kid … or other kind of disabled kid … because they don’t understand their own feelings. Just ignore what they say, and your love will make everything okay! Yeah, on TV maybe, but in real life, disabled kids are people, not obstacles, and not puzzles.
Maybe it’s just me, but this must be a good show if a 3 minute scene could generate so many strong, utterly conflicting feelings.
If you are a parent of a child with disabilities, or with special needs if you prefer, and you haven’t seen “Parenthood”, get a Netflix or Hulu account binge watch it. And take notes.
Friday, May 9, 2014
Goodbye, "Community"
Why not one more video? “Community” was cancelled today. So, let’s pay tribute to a not very realistic, but completely endearing character with Asberger’s … Abed!
Parts And Service
AmputeeOT asks, why can’t amputees buy some prosthetic supplies on their own, online?
I have run into a little bit of the same problem with certain ventilator supplies. I see the sense in channelling purchases of some items through medical equipment specialists. Some parts are too technical for users to evaluate and select by themselves. But some replacement parts are very standardized and interchangeable, and we ought to be able to buy them at bargain prices on eBay if we want.
A Great Mother's Day Video at Shared Abilities
Charisse Hogan, Shared Abilities - May 9, 2014
The Shared Abilities video linked above … which I will also embed below … forces me to confront a sort of taste paradox.
I don’t like sentimentality. Maybe it’s because I’m a Generation X’er, so my default emotion is ironic detachment. Maybe it’s my ingrained wariness about God-talk. Maybe it’s a guy thing. I shouldn’t like Charisse Hogan's videos, but they always win me over because they say something. By which I mean something that isn’t obvious, isn’t cliché, and hasn’t been said a thousand times before. Charisse has a distinct voice, and that is a either a rare, or a hard-won gift. And let's face it, she's far more adept at video editing and composition than I am. iMovie is the most woefully unused software on my computer.
I’d like to post something myself in honor of Mother’s Day, and I am thinking hard about it. In case I don’t manage it though, I will be happy to let Charisse’s thanks to her Mom speak for me.
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