Wednesday, February 12, 2014
"My Gimpy Life" Is Coming Back!
Season 2 of the web series, “My Gimpy Life” starts Monday, February 17, 2014. Episodes are all posted on YouTube. You can watch all of Season 1 there, too.
Minimum Wage Victory!
Aamer Madhani, USA Today - February 12, 2014
This is one of the fastest disability rights victories I can remember. President Obama announced the Minimum Wage hike for federal contract workers in the State of the Union Address on January 28. In the live Tweeting event I took part in, the question of sub-Minimum 14(c) workers came up almost immediately. I think the Autistic Self Advocacy Association might have been the first agency to ask the Administration about it, and when it looked like the answer was “no”, they may have been the first to start the advocacy ball rolling, just a few days after the Address. 2 weeks later, the White House reversed their position.
A whole bunch of people with disabilities who work hard under federal contracts will now go from being paid below the current Minimum Wage to being paid a full and higher Minimum Wage of $10.10 per hour. That is one hell of a victory.
So, do we think that the Administration literally didn’t think about this aspect before we brought it to their attention? I’ll bet that’s exactly what happened. I picture President Obama getting a little testy with his staff about it. I mean, here's potentially the most popular item in his State of the Union Address, and it turns out they failed to do their homework on it and within minutes discover this nasty little exception that could make the whole think look totally unfair. Amateur hour!
I'd just say that maybe it isn't so terrible. I mean, disability issues are always forgotten and overlooked in broader policy discussions. It's not like this team is any worse than any other on the subject.
I'd just say that maybe it isn't so terrible. I mean, disability issues are always forgotten and overlooked in broader policy discussions. It's not like this team is any worse than any other on the subject.
Either way, thank you President Obama for doing the right thing. And we do hope you'll help us end the sub-Minimum Wage entirely, for all workers with disabilities.
Addendum:
Here is a more in-depth piece about what’s been achieved. It includes a very good, and quite even-handed explanation of the background issues. Not even the “mainstream” news outlets gave the “other side” of the argument, but BillMoyers,com did, even though it is a more left-wing, pro-worker sort of website. Personally, I think including the other side’s strongest argument makes our side’s argument that much stronger than articles that just act like there is no counter-argument.
Mike Elk, The Poverty Line | BillMoyers.com - February 12, 2014
Tuesday, February 11, 2014
Alex and Frederic Bilodeau
NBC Olympics - February 11, 2014
Aw, crap. Here we go again. Trying to figure out what I feel about Canadian Olympic Freestyle skier Alexandre Bilodeau and the way he “credits” his brother Frederic, who has Cerebral Palsy, as being his “inspiration” to achieve … as of Monday … two Gold Medals?
I was excited in 2010 to hear about the Bilodeau brothers for the first time, but even then there was a “disturbance in The Force” … an unsettling feeling that there was something just a bit wrong about this. Maybe not about the men themselves or Alex’s achievement, but about the story Alex and his family were telling, and how the schmalz masters at NBC Sports were distilling it even further to a more syrupy brew.
If you are not a Winter Olympics watcher, here’s the gist of the story:
Alex’s older brother Frederic has Cerebral Palsy. When Alex first rose to prominence at the 2010 games in Vancouver, he went out of his way in every interview and profile segment to say that his brother was his main inspiration to persist in his commitment to his sport. In turn, Frederic was portrayed as being Alex’s #1 fan, cheering him on at every event. We saw Frederic a lot in Vancouver, because Frederic’s enthusiasm and love for Alex … and Alex’s obvious love for his brother Frederic … became the animating theme of Alex’s story.
I can’t remember exactly how I felt about this in 2010. I know I wrote something about it, but that was on my old blog which is now gone. I think that I admired what I saw then as a loving relationship of equals between Alex and Frederic, while I cringed a bit at some of the sappy language used by the NBC narrators, and by Alex himself … though I might have cut Alex some slack since he was speaking English as a Francophone Canadian. It was a feel-good story to me, with reservations.
Then Monday night, there they were again, with what might have been archival footage from 2010 mixed in with new interviews and shots of Frederic cheering as Alex won another Gold. The same themes were there in full force:
• Whenever Alex feels tired or complains about having to train another day, he thinks of how hard “every single thing” is for Frederic, and that rekindles Alex's determination.
• Alex does what he does in part because of all the things Frederic can’t do. Frederic can't be an athlete, so in a way, Alex is doing it for him. Frederic’s joys come through Alex’s achievements.
• Alex sees how difficult and even painful everyday tasks are for Frederic, and he ties that in with the hardships of training for the Olympics. If Frederic can do what he does and still be cheerful, Alex can certainly stick to his plan.
• Frederic is always happy, always cheerful, and never complains.
Four years later, nothing seems to have changed for Alex and Frederic. I think I’m the one who has changed. For better or worse, I am much more attuned to “Inspiration Porn”. I really kind of wish I wasn’t, because then I could just enjoy this without feeling queasy. I found myself questioning pretty much everything Alex and the narrators said.
• Frederic is disabled, sure, but I’ve seen far more profoundly impaired people than he seems to be. Can he really not achieve any of his dreams? Are all of his goals "not realistic?"
• Is it really such a great thing if Frederic has to live vicariously through Alex?
• Surely, Frederic must have bad days, when he's not cheerful. And if he doesn't, that's even more disturbing. Does he think that his family's devotion depends on him never complaining? If he had a meaningful complaint, would he even think of communicating it?
• Again, I want to let Alex off the hook for his choice of words in English, but I won’t let NBC off the hook for constantly saying that Frederic “suffers from” Cerebral Palsy. It may not be that big a deal in the grand scheme of things, but it’s so easy to fix. Just say he “has” Cerebral Palsy.
But the biggest question I had after Monday’s reintroduction of Alex and Frederic Bilodeau … the question I can’t stop thinking about … is whether anyone over the last four or more years has ever interviewed Frederic, or just asked him briefly for his actual feelings and thoughts, in his own words? None of the articles or TV segments I’ve seen have included any statements by Frederic himself. Everyone attributes motives and thoughts to him, but they don’t even claim to quote him.
Is that because Frederic can’t communicate at all? The subject doesn’t even come up, so we are left to wonder why we don’t get Frederic’s thoughts first-hand. Or worse, maybe we’re supposed to not even notice, because all the visual evidence we have is of the kind of person who most people don’t expect to have a voice. Four years ago, I don't remember wondering about this. He is literally made an object on TV … a symbol of ideas and values, not a real person. Icon might be a better term, since he almost appears to be a quasi-spiritual talisman for Alex and his family.
Here are some things that could be added to this story that would resolve a lot of these conflicting feelings, I think. If anything, they would add emotional weight to the story, even for people who already think it’s awesome:
• Do a direct on-camera interview with Frederic. It would be edited of course … like all of these Olympics segments are ... but it should be filmed if at all possible. If his speech is hard to understand, include the people who are good at understanding it … maybe his family? … and use their help to add subtitles. If he speaks only French, they’d have to do this anyway.
• If Frederic doesn’t speak at all, explain that to the audience, then convey the thoughts he does have some other way … such as the voiceover person reading his quoted words, however he communicates them.
• If Frederic is so cognitively impaired that he doesn’t even communicate complex thoughts … which I really doubt based on what we’ve seen of him … then explain that in a simple way. If that sounds like too much of a downer, then go ahead and point out that his body language speaks volumes.
• It is possible, I suppose, that the Bilodeau family thinks that being interviewed would be too scary or humiliating for Frederic. I hate to think of how some slick producer would try to persuade them otherwise, but really, Frederic has been used so much already to promote Alex’s exploits that giving him an actual voice can only be empowering.
• It is also possible that Frederic, himself, doesn’t want to be interviewed, for any number of personal reasons. That’s easy then … just say that NBC wanted very much to hear from Frederic himself, but that he’s too shy … or he didn’t want to take anymore spotlight away from Alex … or whatever.
It’s not that I think Frederic has some huge secret that people don’t want him to reveal. I don't think this is a deliberate conspiracy to silence him. I do admire what seems to be the genuinely sincere and devoted relationship the brothers have. There are plenty of similar families where the disabled brother would really be an afterthought or even an annoyance to a sibling. I don't think anything like that is going on here.
I just don’t like how Frederic has been passively bypassed. Intentionally or not, it makes him appear less than a full person. I’d like to hear from Frederic, or know the reason why not.
Video Of The Day
I enjoyed the hell out of this this morning. Nothing really new, but I like the way the scenes are played, and the Holy Water spray bottle is genius. Found on the WaistHighView Tumblr blog, via The perks of being disabled.
Monday, February 10, 2014
Horror Story ... Good News Story - Followup
Michael Virtanen, Associated Press - February 9, 2014
Here is some … perplexing? … news to update the apparently goodish news about how New York State is investigating and prosecuting abuse in institutions for people with developmental disabilities. It seems that New York State’s new abuse investigation agency is being … or appearing … cagey about reporting data on the cases that have been reported and especially on the progress and outcome of cases. Officials are citing confidentiality for ongoing cases, but my sense is that nobody is really looking for results on individual cases, by name, but rather statistical reports on what is being done with reports of abuse.
Oddly enough, having worked adjacent to similar types of state agencies, I wouldn’t be surprised to find out that the apparent stonewalling is largely a matter of miscommunication about what, exactly, outside advocates want to know. Perhaps families involved are asking for information on specific cases … information that is too soon to report. Maybe that is being conflated with other advocates who just want to know not only how many calls and tips have come in, but how many of them have been deemed unfounded, how many are under investigation, how many are being prosecuted, how many care providers are on suspension, how many have been fired, etc.
The other thing I wonder about is whether the new agency got a flood of transparently false, malicious accusations. Maybe not. But, the same kinds of employees who could happily stage “fight clubs” with developmentally disabled group home residents might also feel comfortable reporting innocent coworkers they just don’t like, or took the promotions they wanted, to the anonymous tip line. Like I said, maybe it’s just my nasty, misanthropic mind, but I do hope the agency has some effective ways to quickly identify entirely false claims.
Either way, whether the agency is hiding something or not, they should figure out a better way of regularly reporting data on their work.
An Instant Classic?
Thalensis - February 10, 2014
This is amazing. It should become a permanent, shared thing in the disability community, like the original Spoon Theory article.
Looking Forward To A "Call The Midwife" Story
Emma Pryer, The Daily Mirror - February 9, 2014
I can’t wait to have the chance to see this!
At the moment, I think the only way for Americans to see Call The Midwife is on Netflix, and they only have two seasons available. The show is a BBC drama about Midwives in a poor and working-class section of London in the early 1950s. The tone of the show is surprisingly light, while at the same time focusing a lot of on the hardships of poorer Londoners dealing not only with post-WWII deprivation, but values and taboos that still hold sway and are just barely beginning to modernize. Each pregnancy the Midwives deal with on the show helps explore a particular theme … like out-of-wedlock pregnancy, interracial relationships and racism, lack of birth control, and … in one episode I think in the second season, a baby born with disabilities being rejected for awhile by his father.
Another episode also visited an institution for the disabled, and one of the newer Midwives is revealed to be disabled herself, and spent her childhood in one of those institutions. So, disability isn’t a new theme for “Call The Midwife”. And a disabled couple having a baby, of course, is both an important disability theme and a way in for a show that focuses on pregnancy, birth, and parenting. I don’t know how the story will go, but based on the show’s track record, I expect that the Midwives won’t be free of prejudice and misgivings, but will ultimately side with the disabled couple over whatever opposition they face. The nun Midwives, especially, often express old-fashioned, dogmatic views around their dinner table, but when push comes to shove, they fight like pit bulls for the women and babies under their care.
A couple of notes about the Mirror article itself … Did the writer go back and remove references to the actors “suffering” their disabilities? I skimmed this article last night and have a vague memory of noticing some rather unfortunate language in it. And the comments below suggest that the “suffers from” construction was used in the article, but I can’t find it. Finally, some of the adjectives used to describe the episode are borderline sensational or even offensive. I don't mind the writer saying that the pregnancy and birth on the show provoke "disgust" in the other characters on the show. That's a description of things that happen in the story. But when she characterizes the episode itself as "controversial" and "discomforting", that's commentary on how we, the viewers will process the story ... as if a disabled man and woman having a baby will push our buttons. Or, is she saying that we'll be disturbed by how others on the show will react to that? She's not clear.
Regardless, I think the article itself, as a whole, is a pretty good read and touches on all the important points. The only remaining correction I would suggest has to do with what is properly considered “first hand” or “ personal” experience. The article says that the writer of the episode, Heidi Thomas, has “personal experience” of disability because her brother has Down Syndrome. While that’s a fairly common thing for people to say and write, it is wrong. She has, by definition, second hand experience. First hand experience is having Down Syndrome. Second hand is having someone close to you with Down Syndrome. Not to say that second hand experience is insignificant, but it isn’t the same.
By the way … if anyone reading this happens to be British, please don’t spoil the show for us Yanks!
Sunday, February 9, 2014
Weary Sigh ... Service Dog Edition
Drew Karedes, KHOU - February 7, 2014
Because the worst problem in society today is PEOPLE PRETENDING TO BE DISABLED SO THEY CAN TAKE THEIR DOGS INTO COFFEE SHOPS.
Two Down, One To Go?
Dustin Rowles, Pajiba.com - February 6, 2014
This article is how I found out The Michael J. Fox Show has been cancelled.
The Michael J. Fox Show was one of three new TV shows featuring disabled characters that I was looking forward to this TV season. The others were Ironside (remake of the late ’60s, early ‘70s Ironside starring Raymond Burr), and Growing Up Fischer, which premieres February 23 and is being hyped by NBC during Winter Olympics ad breaks. "Ironside" was cancelled after only 3 episodes. Fox’s show lasted awhile longer, and received somewhat better reviews, but it never came even close to catching fire.
It seems like "The Michael J. Fox Show" made it’s best, maybe it’s only points about disability in the Pilot episode. After that, it really did become just another generic sit-com with somewhat higher quality than usual stars … particularly Michael J. Fox, who portrayed a news anchor with Parkinson’s Disease, the same condition he actually has, and Betsy Brandt, who was so brilliantly dramatic and funny in "Breaking Bad”. But, neither star power nor the potentially powerful themes generated by the main character’s disability could save the show from mediocrity … maybe because they failed to use disability after the first episode, other than a few shallow cracks. The writers and possibly Fox may have thought that focusing strongly and frequently on Parkinson's would send the wrong message about it. Touching on it occasionally and lightly, then maybe once or twice per season depicting a real disability-related dilemma probably would have worked well on the show, except that none of the other stories or character traits were interesting or particularly funny.
“Ironside", too, failed because except for the main character using a wheelchair the show was generic. "Ironside" was bolder in using the main character’s paralysis as an important plot and character point. But again, the unusual inclusion of disability didn’t alter the fact that “Ironside” was just another police procedural, with nothing much to say that most viewers haven't heard before.
Pajiba’s Dustin Rowles says of “The Michael J. Fox Show”, along with some other cancelled NBC sit-coms:
"But the other thing they had in common was tired writing. They took decades-old sitcom tropes and simply modified them to fit these updated characters. They built shows around a premise, instead of around the characters. They didn’t bother challenging the audience, they simply tried to please as many people as possible.”
In the case of “The Michael J. Fox Show” and “Ironside”, disability was “the premise” that wasn’t enough by itself. Not that it was a bad premise for either show. I don’t think people were put off by characters with disabilities. But, disability alone is probably not enough to sustain a TV show in the absence of interesting characters, good writing, and up-to-date or innovative filming styles.
I’m hopeful for “Growing Up Fischer”. J. K. Simmons, who plays the blind father of a “typical” family, is one of the very best “that guy” character actors, and Jenna Elfman, who plays his wife, is accomplished, though to my mind a bit harder to like. The real problem that worries me is that I haven’t seen any indicate yet that there’s going to be anything interesting or funny about this show except that “Dad is blind” and makes lots of jokes about that aspect of himself. If that’s all they’ve got in mind, I’m not sure it will work, and it just might be noxious.
One thing does occur to me now that I’ve never really considered before. Maybe the reason disability is so rare on television is that doing it well is really, really hard.
Meanwhile, if you want to see complex, challenging, empowering disabled characters on TV, watch Game Of Thrones, a show that is not at all about disability, but has, at current count, four characters with disabilities. The Fourth Season begins April 17.
Weekly Wrap-Up
Sunday, February 2, 2014
Monday, February 3, 2014
Tuesday, February 4, 2014
Wednesday, February 5, 2014
Thursday, February 6, 2014
Friday, February 7, 2014
Saturday, February 8, 2014
Saturday, February 8, 2014
Book Club: "The Man He Became", Part Two: "He's Through"
James Tobin - Simon & Schuster, 2013
Part Two: "He's Through"
For this second book club installment, looking at Part Two of “The Man He Became”, I’ll highlight the themes of Part Two, roughly in order, along with some of examples and ideas that stood out for me.
1. Tobin looks at the social status and stigmas of disability in the early 20th century.
Some of the prejudices were familiar, but some were new to me. For example, I had never heard of the association at that time between syphillus and paralysis. I found it fascinating that Polio was linked ... incorrectly ... with “dirty” immigrant children and their neighborhoods. Tobin traces the evolution of peoples’ ideas about disability from cruel and superstitious beliefs to more compassionate and scientific ideas … while noting that in the 1920s, there’s nothing yet like a positive view of disability or a “disability rights” perspective.
2. Roosevelt and his circle refine the scope of what “recovery” means.
At first, it means total recovery. Then, walking without crutches or with only a cane. Then being able to navigate essential functions and rituals normally enough to be viable in politics. They really do seem to have adjusted and readjusted their take on Roosevelt’s disability as his condition and long-term prognosis changed.
3. Competing visions of how Roosevelt should spend the rest of his life.
Should he gve up entirely and be bedridden? Will he retire to Hyde park and spend a pleasant life of favorite diversions and light duties managing his estate? He could live an interesting and useful life dabbling in local politics and writing. Or, could he return to big-time politics and his Presidential ambitions? Eleanor didn’t believe early on that he’d ever reach high office again, but felt it was best for him to stay in politics. That sounds like a surrender, but this led to the groundwork being laid for a later rise to the Presidency.
4. Advanced therapy theories and techniques include both the traditional "medical model” and the idea of adaptation for the most fully functional everyday living, whether or not the dream of a “complete recovery” is realized.
I’m impressed that the doctors and therapists aren’t fanatical about Roosevelt walking again, or encouraging total devotion to therapy. Dr. Draper’s unorthodox views probably helped. Roosvelt’s medical team crafted a mixed goal of physical improvement and practical adaptation.
5. Not hiding the truth, but controlling the narrative, both personally and politically.
Tobin continues to paint a picture of improvisation, in which there was never a grand plan to hide the disability, but efforts at various stages to give people the most favorable impression, and to recast what disability meant to people, at least in Roosevelt’s case.
6. Tobin looks at how wheelchairs and crutches were viewed in 1920s society, and the perceived overlapping of illness, weakness, and disability.
Wheelchairs and crutches were symbolic of illness and dependence. Most wheelchairs weren’t designed well for many environments. Early on at least, Roosevelt only used a wheelchair for point to point mobility, not so much because of stigma, but because of poor design. Disability and illness overlapped in peoples’ minds, but not completely. There was a narrow margin of disability that people could interpret as something other than illness. This is the conception of active, productive disability that key people on Roosevelt’s medical team understood and quietly encouraged.
7. Roosevelt reintroduced to politics suit other people’s purposes, but with unexpected results.
Roosevelt was asked to nominate Al Smith, and later to run for governor (he refused the first time) in order to help Al Smith in his quest for the Presidency. The Smith people saw him as an ally from a different camp, and as someone who had political juice, but no power … a potent symbolic figure, but not a threat. So, they inadvertently raised up someone who ended up achieving what Smith couldn't.
8. Roosevelt’s Democratic Convention speech to nominate Smith starts to transform how people process Roosevelt’s disability.
This might be the pivotal moment of the book. Within the span of a single speech, observers went from pity and sadness to admiration and thinking the unthinkable. Tobin recounts beautiful descriptions by Frances Perkins (who would later be Secretary of Labor under Roosevelt). I loved the moment when Roosevelt asked a Pennsylvania delegate standing hear him to “check the podium” to confirm that it was nailed down. The event was somewhat romanticized as time went by, but it does seem true that as the onvention broke down and deadlocked, some people seriously saw Roosevelt as a viable alternative candidate. Afterwards, people certainly said that he’d be a contender in 1928, “if you can get right”.
9. Persistence of the idea that he will have to walk again in order to succeed.
Roosevelt landed on the idea that he could still be President, but he would first have to be able to walk without crutches. This became his criteria, and so far it seems like he thought it was possible, which enabled him to keep on both with his physical therapy and his political activities. At this stage, pursuing both goals in parallel seem in retrospect to have been genius, but of course, at the time it was just another hopeful improvisation. Nobody knew if it would work.
10. Tobin describes the roots of Roosevelt’s dual approach to his disability … private attention to it, public reticence and diversion.
It was a time when “reticence” and privacy were more prevalent for everyone. Tobin provides more insight into the stigma of disability, which was in part a side effect of a general taboo against anything to do with the naked, unprotected, or damaged body, Tobin suggests that part of the excitement at the convention was that by speaking and showing himself publicly, Roosevelt was breaking taboo. At first people felt some revulsion, but then a weakening or breaking of the taboo itself. Roosevelt was a particularly private, “opaque” man, even for that time. I was struck by Roosevelt’s frequent use of the made-up word, “Infradig” … meaning things not to be talked about. Anything to do with his disability was “Infradig” in normal conversation. There were two exceptions ... he would discuss his condition with medical professionals and with other people who had Polio. Tobin here starts to mention letters Roosevelt exchanged with other people who had Polio … people from all walks of life, who had nothing in common with him except Polio. I was enormously moved to read that this exceptionally private man was so open with details of his life with people he barely knew, because he sought their advice and, eventually, began to offer his advice to them.
11. Roosevelt learns from trial and error, and starts to take control of his recovery.
Roosevelt is at first totally committed to therapy. Eventually, he becomes distracted and a bit diluted by other pursuits. He accidentally discovers that heat and sun help, as well as swimming. He never rejects medical advice, but becomes less dependent on it. Roosevelt starts to seek medical advice he agrees with. Also, he starts to contributes his own study and observation of Polio and its treatment. Without getting too far ahead of things, it sounds to me similar to how he approached the Presidency … listening to the best advice, but also following his own instincts, and above all TRYING STUFF.
12. At the end of Part Two, Roosevelt starts his association with Warm Springs.
Favorite quotes from Part Two:
“Hell, it’s not legs we want in the White House, it’s brains!”
“Wheelchairs were not for people who were leading normal lives. They were for sick people, in hospitals and sanitariums. With an attendant always standing behind him, the man in a wheelchair was by definition not an independent human being who could care for himself.”
"To stand was an act of manhood," Tobin quotes extensively from Emily Post about all the occasions when etiquette demands that a man stand. "Roosevelt could do none of these things."
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Next Saturday, February 16, we'll finish "The Man He Became" with Part Three: "Resurrection"
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