Thursday, February 13, 2014

Rookie Mistakes

Ideas topic icon
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

Photo Of The Day

Young woman viewed face-on, sitting in a sports wheelchair with cambered wheels, clutching a basketball
From the Sports & Copines Tumblr blog, via disABILITYaware.

"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.

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 Alexs 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, heres the gist of the story:

Alexs 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 Alexs #1 fan, cheering him on at every event. We saw Frederic a lot in Vancouver, because Frederics enthusiasm and love for Alex  and Alexs obvious love for his brother Frederic  became the animating theme of Alexs story.

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

Advocacy topic icon
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


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?

Photo of an old-style TV set with wheelchair symbol on the screen
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

Disability Thinking 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