Friday, February 14, 2014
Disability Thinking - First Birthday
A year ago today I sat in my local Starbucks and set up a new Blogger blog that I named “Disability Thinking”. I had blogged on and off for almost 15 years prior, but rarely about disability, and I wanted that to be the main topic of my new blog. I had vague but rather over-blown ideas about the blog being just the first step in developing some sort of online magazine for people with disabilities. That idea is kind of on hold, though I still think there’s an unmet need for a certain kind of disability website with a certain tone and feel you don’t find in current disability websites, but you do find in quite a few personal disability blogs. More about that soon, perhaps …
Compared to some of the other disability blogs I visit, Disability Thinking got off to a slow start. I’m very pleased with it overall though, and at this point it is such a part of my life that I can’t imagine giving it up.
By far the most important element of whatever blogging “success” I’ve had is reading other peoples’ disability-related blogs. I read a lot of them, and I am always looking for more, but I want to give special thanks to a few, and recommend them to whoever reads this:
You can see a longer list of disability blogs I like over to the right, but these are the ones I look forward to reading, and get excited when there’s a new post. They have all also helped me develop my own blogging style, sometimes with direct advice, sometimes just by example. Emily at Words I Wheel By, in particular, gave me some great tips on networking through social media, and Ellen at Love That Max provides an invaluable platform for other bloggers with her Weekend Link Ups. Thank you all for you help and your continued blogging.
One thing I hoped I would find when I started Disability Thinking is a community of disability bloggers I could relate to and truly enjoy. I have found them, and I continue to find more. These are people who not only “get” disability issues in a similar way to me, but they are also funny, revealing, great writers, and they are … for want of a better term … cool. This gives me hope for the future. Even if the more organized parts of the disability community drop the ball on getting the next generation ready to take over, it will be okay because the next generation appears to be preparing itself just fine … if not better than the people who came before.
One thing I’d like to do better is explore and engage with a more diverse community of disability bloggers. For one thing, the majority of bloggers I follow are women, and I wonder if I am missing some perspectives from other genders. Another gap that bothers me is harder to define. I guess you could call it the “positivity” side of disability blogging. Because I am the person I am, I tend to gravitate towards blogs that highlight problems and have critical, negative, darkly humorous tones. I do come across lots of other blogs and disability-related writings that are much more positive, focused on hope and achievement, and expressing a sunnier mood. But, I have to work harder to appreciate them. I want to do that more in the future, because I feel like the gap between these two kinds of disabled people is more significant than we probably understand. It sometimes seems like the happy people and the grumps of the disability community barely speak to each other, not out of anger, but out of neglect. If that’s true, we are all missing out on the possibility of doubling our circles of support and friendship. I want to explore that more in the future.
Meanwhile, for the next week, I’m going to change the “Popular Posts” widget to show the most popular posts over the whole life of the blog, rather than just the last week as is usually shown. That way people can revisit some of the stuff I wrote early on. And seriously, why is my most popular post, by far, the weak piece of junk I wrote about “Forrest Gump?”
Thanks to all my readers, and all the people I read, for a great first year!
Andrew Pulrang
Disability Thinking
Thursday, February 13, 2014
“Parenthood” “ Friday Night Lights Crossover” Goodness
Two TV universes, in which disabled characters live and breathe, unite.
On “Friday Night Lights”, we got to know a high school football player who had a spinal cord injury resulting in quadriplegia. I won’t say his name, in case someone reading this hasn’t seen the show and might go and watch it on Netflix, but we got to see him take an almost complete journey through rehabilitation, denial, self-loathing, discovering a new community of paralyzed athletes, and finding a new plan for his life as an adult with a disability.
On “Parenthood”, we have watched as Max Braverman’s unusual behavior is diagnosed as Asberger Syndrome, and as his parents and extended family have dealt with this, sometimes well, sometimes kind of stupidly and selfishly, but always with love an devotion to Max.
To tide “Parenthood” fans over during the Olympics, NBC has produced a series of webisodes in which one of the Braverman kids, Amber, secretly tries her hand at record producing at the music studio owned by Max’s Father Adam and Uncle Crosby. The band is Crucifictorious, the “Christian Speed Metal” band put together by Landry on “Friday Night Lights”. Max is there to comment on the proceedings and film everyone with his iPhone.
There’s tons of in-jokes and stealth references to “Friday Night Lights”, and the whole thing is a wonderful, delightful geek-out. There’s not much in the way of disability themes, apart from some light humor about Max’s absolute, total, tactless but charming honesty. But that's okay. Disability doesn't always have to be center stage on a TV show, because it isn't always center stage in life.
And seriously, anyone interested in disabled characters on television should watch at least the first season of “Friday Night Lights”, and anyone with parents of a disabled or autistic child should check out “Parenthood”. Those back episodes are also available on Netflix.
Rookie Mistakes
Or … advice for people just starting to have disability conversations.
This is similar to, but not the same as, disability etiquette or "Advice for the Non-Disabled". Those kinds of things address everyday social interaction and practical accommodation. This list is specifically for people who want to discuss disability issues, culture, and philosophy. It goes without saying but I'll say it anyway ... it is for people of good will, who want to have real conversations and want to avoid hurting people as much as possible. It isn't for people who consciously or unconsciously want to score points or impress people with how smart, compassionate, or "with it" they are. Also, it’s not just for non-disabled people. Plenty of people with disabilities are just dipping their toes in the water of disability as a topic of study or discussion. Real-life experience counts for a lot, but it alone doesn’t immunize against foot-in-mouth disease.
Finally, I call the items on the list "Rookie Mistakes" because they are things that people often say and do when they are new to disability-related discussions, and they are largely mistakes ... that is, unintentionally hurtful or annoying.
Enough preamble ... here's we go:
"People First” Language
Say “people with disabilities” or “person with a disability” in most formal, business or academic settings. However, be aware that quite a few people with disabilities don’t like “people first” language, and prefer to call themselves “disabled” or a “disabled person”. There are reasons for this, having to do with whether you see disability as part of who you are or as a separate characteristic, but it’s not really important to sort that out right away. Just stay away from “handicapped”, and above all, don’t use terms like “differently abled”, “handi-capable”, or any other phrasings that sound like they are trying very hard to make disabled people feel better about themselves. A few of us like this, but most of us find such terms to be kind of ridiculous and patronizing.
Practice Humility
Don't place your academic knowledge of disability ... learned in a class or seminar ... over a disabled person's lived experience. You can talk about your different view, or tell them what you have been taught. You don't have to agree with the other person. Just be respectful of the fact that you took a class, while the disabled person lives it every day. Beware of this especially if you start feeling angry that the disabled person you are talking to is "wrong" or "stupid". If you start feeling that way, it's time to step back and ask yourself who is the real expert.
Don’t Minimize Disability
In general, people with disabilities aren't comforted by thoughts and sayings that minimize the importance of disabilities. "I don't even think of you as disabled" and "We all have SOME kind of disability" are generally not helpful or kind things to say. They are the kind of things that can seem to be very insightful and empowering, but for the most part, will not be taken that way. Disabilities are real and have significant daily consequences. A better way to make us feel better or more understood is to acknowledge our difficulties once in awhile. Don’r pretend that they make no difference.
“Not Your Inspiration”
Don’t call disabled people “inspirational”. Just don’t. It doesn’t matter why you feel that way or what your good intentions are, it is something we have heard so often, and so often inappropriately, that it’s like fingernails on a chalkboard to us. I know fellow disabled people who are cheerful and optimistic every day, week in and week out, and even they want to vomit when someone says they or another disabled person is “inspirational”. You can probably express the positive feelings by simply picking a different word. Here are some suggestions that are less annoying, and in some cases more specific and accurate with particular people and situations:
Awesome
Role Model
Amazing
Badass
Cool
Eye-Opening
Thought-Provoking
Astonishing
Admirable
Hilarious
Honorable
Tough
Different Kinds Of Experience
There are all kinds of ways to “experience” disability. All of them have value and provide some insight. However, they are not all the same. Parenting a disabled child is not the same as being a disabled child. Working in a disability-related job is not the same as living with a disability. Walking with crutches for several weeks because of a broken leg can make you more aware of accessibility, but it isn’t the same as having to cope with barriers every day of your life. Participating in a “wheelchair for a day” event may actually mislead you into thinking that using a wheelchair is worse than it actually is, since you’re only doing it for a few hours, while most wheelchair users get good at it over a long time. The point here is to be careful about how you empathize with a disabled person, and don’t claim a different kind of connection than you actually have.
Under The Bus
Remember the old “Seinfeld” bit? “I’m not gay! … Not that there’s anything wrong with that!” There’s a similar kind of thing that happens in the disability community, where one group of disabled people try to explain themselves and escape stigma by back-handedly disparaging people with other kinds of disabilities and worsening their stigma. Probably the most common example is physically disabled people very strongly asserting that they are not mentally impaired. They do this because so often people do assume, say, that a wheelchair user is also cognitively disabled, or that someone who has impaired speech is not intelligent. The problem is that in denying that we are like THOSE PEOPLE, we imply that there’s something awful about THOSE PEOPLE. Non-disabled people have their own version of this, where they imply that rights and freedoms are fine and appropriate for one group of disabled people, but NOT for others. For instance, some educators might agree that segregated classes are terrible for a “smart” kid in a wheelchair, but that kids with Down Syndrome, Autism, or Attention Deficit Disorder really need to be in separate, “special” classes. Every person has unique needs, and one size does not fit all, but beware of those who defend hurtful, dehumanizing practices for certain types of people and not for others.
One final point I’d like to make about these “Rookie Mistakes”, is that because they are mistakes typically made by disability “newbies”, I believe we should go a bit easy on them. We can point out to them where they’ve gone wrong, but try not to unleash hell on them because they aren’t yet tuned into our somewhat specialized traditions and taboos.
What do you all think? I’m especially interested in hearing from “veteran” disability activists and thinkers. Are there other “Rookie Mistakes” that are forgivable but need correction?
Drive
I wrote the following last night in a comment to a fellow disability blogger, Emily at Words I Wheel By, who just passed the road test for her driver’s license:
"Considering the amount of money and time spent trying to “help” people with disabilities, it’s kind of amazing how little organized effort there is helping us get driver’s licenses, cars, and driving adaptations. There is almost nothing … short of a wheelchair if you need one … that instantly bestows mobility and gets us closer to equality like a driver’s license and a car we can drive."
It’s really true, and not much talked about, it seems to me. Back around 2009 - 2010 when the Obama Administration was discussing what kind of economic stimulus to propose, I remember thinking that they should figure out a way to buy a van or other vehicle for every significantly disabled person in American who was demonstrably capable of driving or learning to drive, with adaptations if necessary. I have no idea how much money that would cost, or how it could be done without pissing off as many people as it helped (because of course, thousands of disabled people wouldn’t make the cut to qualify, no matter how you designed the program).
Still, a drivable car with adaptations buys one hell of a lot of independence and work readiness for someone with a disability. And the biggest barrier to us getting behind the wheel isn’t physical problems, it’s affordability. Just buying disabled people cars would be money well spent.
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.
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