Category Archives: media and pop culture

Aware of what exactly?

Cross-posted at Zero at the Bone and Feministe.

Well, it’s Disability Awareness Month in Indiana, USA. Sound Bend, IN, network WSBT are raising awareness with a story about Sarah Schelstraete, who has Down Syndrome. It’s called Sarah’s Story: Hard at work despite disabilities. One thousand points if you can anticipate from the title what my major problem with the article was.

Now, impairments can make particular kinds of work, or work at all, difficult for people with disabilities, particularly when accommodations – be they ramps or particular lighting or a chair or whatever – are not provided. Leaving aside any accommodations Ms Schelstraete might utilise (it’s irrelevant and really none of our business) there’s no indication as to what impact her impairment might have that would make it hard for her to work at her job as the article title suggests. In fact, the article doesn’t tell us what her job actually is, but moving right along. Now, I’m not saying she definitely doesn’t have challenges related to her impairment, but rather that I have a problem with a particular narrative that this article taps into. This is a narrative that erases Ms Schelstraete’s individual situation, whatever that might be, in favour of conveying disability as something the poor dears must overcome! in their tear-inducing (to abled people) efforts! to live a normal life! which includes paid work!

Perhaps it is that push to gloss everything over that skews the narrative here, but let’s take a gander at the actual information the article provides. Ms Schelstraete is clearly a ‘dependable employee,’ as her supervisor Donna Martis says. She does her job well; interviewees are enthused about her being good at her job. There is not really a need, it would seem, to say that she is doing a good job in spite of her being disabled. She is good at her job. And she is disabled. Just like she is good at her job and a woman, good at her job and a daughter, good at her job and a resident of Indiana, good at her job and, I don’t know, maybe she likes detective shows or cupcakes or whatever. But time and again when disabled people are featured in the media, there’s a kind of shock that “those people” could achieve anything of worth – worth defined according to ableist standards around paid work, of course.

As such, I have a problem with wording like this in the article:

‘Martis said Sarah is a valuable employee who knows how to do her work, and requires little supervision.’

Or how about this?

‘Like any hard-working employee, Sarah knows one big benefit of having a job is making money. She often uses her paycheck to buy DVDs and CDs.’

Yep, just like everybody else – yet her competence must be uniquely examined and confirmed by all these people, despite her having been employed by the same laboratories for seventeen years. This is yet another example of the media trope in which PWD are achieving! through! the hardship! Would you like to know what a hardship is? For many PWD, sometimes more than our impairments themselves? Putting up with that condescending bullshit and fighting to be approached as actual people who should be approached with respect. Because handing out “well done!” stickers has nowhere near of the same value as does being treated like a person with things to offer.

These kinds of awareness-raising stories do little more than give abled readers/viewers/listeners a lift, a feel good story they can tuck away out of mind when they’re done. It’s easier for PWD to be a one-dimensional story, those people put there to light up abled people’s worlds with inspiration, prompting a whispered gratefulness that they’re not one of them. How about we raise some awareness of the social oppression attached to being disabled? Awareness ought to be raised about how many disabled people are out of work because, as Ms Schelstraete’s employment consultant Stacey Simcox says, many ‘don’t give someone the chance because they already have the mindset that they’re not going to be able to do the job even with the support’. About how disabled people so often are treated as though they’re being done a favour by being employed at all. About how work can be a struggle or impossible because of workplace bullying. Because of refusal to provide decent wages. Because employers won’t grant equitable working conditions or accommodations.

And let’s raise awareness about the valuation of work. There’s a nasty thread that runs through these kind of stories that holds disabled people to be societal leeches, a drain on resources. This kind of thinking defines human worth in terms of money, as though people are only good for how much money they contribute and how little they take from welfare or healthcare programs and such. It’s the kind of argument used against poor people who need that assistance, it’s the kind of argument that has led to women’s unpaid work in the home being so devalued. It’s thinking that tries to shame those who utilise thoroughly deserved government assistance, as though it doesn’t exist for a reason.

I am continually astounded by negative reinforcement of difference, but barely ever really surprised. You’d think efforts to raise awareness would require being aware.

Pop Quiz: What’s Wrong With This Promotional Still For Glee?

The hiatus for Glee is almost over, and buzz is starting to build again. What better a way to build excitement than to release some promotional stills, right?

A promotional photo of the cast of Glee, photographed against a white cinderblock wall. Moving from left to right, the image has a sign reading 'Join Glee Club' attached to the wall, and then the characters Quinn, Puck, Mercedes, Tina, Finn, Rachel, Kurt, and Artie. Sue Sylvester is holding a can of red spray paint which she has just used to x out the sign and draw across the members of the Glee club. The line is at chest level on everyone but Artie, who is seated. The line goes across his eyes. Off to the side, Will, Terri, and Emma are standing with horrified expressions.

Found via kaninchenzero’s Tumblr.

ETA: Shortly after this post went live, I learned via access_fandom that Glee is being recognised with a ‘Television with a Conscience‘ award for its depiction of disability.

Thoughts On A Book: Scott Westerfeld’s ‘Uglies’

Spoiler Notes: This post does contain some spoilerish material about Uglies. If you haven’t read the book yet you might want to wait to read this because it mentions a big reveal which is rather central to the plot! I have isolated it in its own spoilery paragraph for the benefit of those who would like to go ahead and read this anyway.

I recently finished Uglies, which isn’t about disability, but does have some themes which I think are disability related, which I used as a justification for writing about it here because I think it’s a really interesting book and it touches upon some intriguing themes and material. It’s actually the first in a series, as I learned when I got to the end and was like “but what happens next?!” and then saw the bit advertising the next book in the series.

The world of Uglies is one in which everyone is surgically altered at 16 to look more or less the same. To look, in fact, “pretty.” This homogenised society is supposed to be less filled with strife and argument because everyone is beautiful and has also had the experience of being “ugly,” and the logic of the modifications is very much based in evolutionary psychology; people are modified to be highly symmetrical and to appear “vulnerable” and so forth.

When the story opens, we are introduced to the lead character while she is still an “Ugly” and eagerly looking forward to the surgery. But she meets another character who introduces her to an alternative: Running away to join a community of people who do not undergo modification. This character, Shay, is very opposed to the very idea of modification, even repulsed by it. Our hero just wants to be pretty and go to all the pretty parties and is very resistant to the whole idea.

As a reader, I immediately felt a parallel here with cure evangelism. In the society we live in, it is assumed that everyone wants to be cured and in fact cures are forced upon us, just like the surgery in Uglies. “It’s for your own good,” the argument goes, and ample arguments are mustered to show you how terrible things will be if you are not cured. In Uglies, children are taught from birth that the worst thing in the world is to be “ugly” and they are presented with “Pretties” as models of perfection.

The “Uglies” give each other nicknames based on supposedly ugly aspects of their bodies. They bodyshame themselves and each other and eagerly look forward to the time when they will be “Pretties.” Once Prettified, people are modified later into Middle Pretties, once they reach adulthood and start working, and then again as they transition into old age, but naturally aged people don’t exist. A society of perfection is hardly a new thing in science fiction, but it’s still interesting to see how different authors play with the concept.

One of the great parts of the book is one in which some sly arguments against evolutionary psychology are presented. Our lead character, Tally, insists that she’s genetically programmed to like the Pretties and that it’s just natural, and one of the characters who  has chosen not to be modified is highly skeptical. As she’s arguing with him, she starts to realize that his unchanged body actually has some appeal of its own despite the fact that he is an “Ugly.” He points out that she’s been taught and trained to hate herself and that her “Ugly” body is actually beautiful in its own right, and she starts to think about how maybe the things she hates about herself are things which will resolve as she gets older and grows into her body.

[Spoilery paragraph!]The big reveal in Uglies is that the surgery doesn’t just modify the body. It also alters the mind. Most people who undergo the surgery are left with  lesions which change their personalities, literally taking parts of themselves away. This, too, reminds me of cure evangelism. It is assumed that a cure holds no costs, that people remain themselves after being cured and thus that everyone should desire to be cured, when in fact this is not the case. The book also points out that some people die during the surgery, just as some people die in medical treatment; these decisions are not without costs.[/spoilery paragraph!]

Uglies unfortunately doesn’t touch upon racial issues very much. I’m hoping that this changes with the series because it seems like an obvious thing to explore in a book series about a society which is homogenised to an extreme degree. Uglies seemed to be leaning in the direction of a whitened world, and I would really like to see some people of colour introduced in later books; the story of this book has parallels with both racial identities and disability, and the erasure of both, along with cultural assumptions about erasure being beneficial or even desirable.

At its root, Uglies is about norming and insisting that everyone fit into that norm, no matter what the cost might be, and having people outside the norm challenge this social attitude. I know that’s something which resonated with me as a reader, and I suspect that the same might hold true for some of you as well.

Film Review: The Music In Me

Full disclosure: I know the film’s producer, Anne Kenyon, and she lent me a copy of the DVD after we got chatting about her film work one day.

The Music in Me (2007) is a documentary following a Sydney, Australia-based dance group called the Merry Makers, which is made up of about 50 intellectually and physically disabled dancers as well as 15 helpers. They’re pretty well known around these parts. The group meets every Saturday and has been running for about 30 years as I’m writing this. The documentary, a winner of multiple international awards including Best Documentary at the 2007 Avignon Film Festival, follows the group leading up to a performance at the Sydney Entertainment Centre (and as anyone from Sydney reading will know, that’s a really, really big deal).

We’re first introduced to Lucinda Bryant, the group’s present artistic director and choreographer. ‘They are probably the most amazing group of people I have ever come across. They break down all boundaries placed in front of them,’ she tells us. There’s a great deal of focus on Bryant’s role, as you might have predicted, and what she thinks and says, but she consistently redirects attention to what the Merry Makers themselves do rather than her role, which is refreshing considering that these sorts of documentaries – and sometimes abled people who work with disabled people! – tend in quite the opposite direction.

The structure of the film is such that, within the framework of leading up to the Sydney Entertainment Centre concert and dance rehearsals, there are also a number of interviews incorporated. These are with members of the Merry Makers as well as their families (and Bryant, of course). There were many interviews that must have been recorded that didn’t make it into the film; there are some included in the DVD’s extras. It was saddening that they evidently didn’t have enough time to fit them all in, because I would have so liked to have learned more about everyone.

That both dancers and their families are interviewed produces some interesting dynamics. We get to delve into people’s home and family lives more, and so there’s a more holistic picture of how Merry Makers fits into each person’s life than we might otherwise have had. We learn about the lives of Sam and his mother Maria; about how Sabina came to care for her granddaughter Samantha; about the relationships between Jenny, Alana and Aida. That’s because Merry Makers draws in a community wider than the dancers themselves. As Lea says of her daughter Rebecca’s participation in Merry Makers, ‘I didn’t realise when I joined Merry Makers that it was gonna be about me, too.’ There’s a very uncomfortable moment when Lea recalls her thinking about Rebecca’s being disabled as a tragedy, but then we come to her changed thinking, that the tragedy framework needn’t apply: Rebecca ‘can be what she wants to be, do what she wants to do’. It becomes more about everyone’s relationships than the dancing, and the interviews are really humanising. All too often disabled people are portrayed as a disability with a person attached, but these interviews really serve to show that the people concerned are in fact people.

The thing that bothered me the most about The Music in Me was that there were times when interviewing people’s relatives (most of the featured dancers were minors) took the place of the dancers speaking for themselves, when it moved from being about the community to parents speaking for their children. And at times, it didn’t fit in very well either, for instance, there wasn’t really a call for adult dancer Beaver’s parent to speak for him. Perhaps some dancers preferred their parents/carers to speak for them, perhaps communication styles were such as this was preferable, but nevertheless that overall dynamic remains, and I would like to have had more on the dancers’ perspectives. Something that did a little bit to mitigate my discomfort was that Lucinda’s mother Janet was interviewed, too, and there are some amusing tiffs between them over the administration of Merry Makers. I guess in this respect the documentary reflects the structure of the organization, it seems to be run by abled people. Overall, there’s a really high ratio of abled perspectives to disabled ones featured. As I’ve mentioned, this leads to some very distressing moments; it’s particularly stark when there’s talk about life expectancy and some of the talk from parents/carers about the dancers’ futures was upsetting to me.

And of course there are large chunks of the documentary that are devoted to showing what they do, just dancing, without commentary, which is great. It’s about the love of dance! It was pretty lovely to see how close everyone was, and the lack of the sort of contempt you often encounter from abled people who work with disabled people. There’s a great deal of emphasis on catering to every single person as individuals rather then expecting them all to fit into a particular frameworks of what people with their disabilities are like as is all too common.

The film runs at about an hour. And guess what, everyone? It’s subtitled all the way through and properly at that! This is something I oughtn’t to be surprised at, but proper subtitling is all too rare, even sometimes in disability-focussed media.

Quick Hit — 4D Plexes

Movie poster from the Korean realease of Avatar, showing a white man on the left and his blue faced Avatar on the right, with fantasy creatures imposed in the bottom foreground. Bottom has Korean writing for title "Avatar".Our local theater in South Korea has one of the first and only 4D Plexes in the world (and it is currently showing Avatar, so I could possibly be entertained and annoyed and over-stimulated all at once! Whee!).

“The way the company finally cornered that elusive fourth dimension is by engaging all five senses: moving seats, wind, water sprinkling, lasers, and synthetic smells are all used in time with the movie.”

What are your thoughts/feelings on this so-called break through in the movie going experience? Does the thought of a moving seat and being accosted with sprinkling water and scent sound like an enhanced movie experience for you? Does it seem like it would just provide another barrier to your enjoyment?

Personally I picture myself using my popcorn bucket for something other than its intended purpose…

Have at it in comments.

Singing in Sign

One of the things that drove me up the wall about a certain popular television show that I’m not going to talk about was the scene with the “Deaf Choir”. I put “Deaf Choir” in scare quotes here because, while the members of the choir showed in that show were Deaf, that didn’t look much like any of the Deaf singing that I’ve seen.

But hey – don’t take my word for it.

Auslan is the language of the deaf community in Australia. Here’s a video of a deaf woman signing “Madly Truly Deeply” by Savage Garden (lyrics below video).

Lyrics:

I’ll be your dream / I’ll be your wish / I’ll be your fantasy.
I’ll be your hope / I’ll be your love / Be everything that you need.
I love you more with every breath / Truly madly deeply do

I will be strong I will be faithful /’Cos I’m counting on a new beginning.
A reason for living.
A deeper meaning.

I want to stand with you on a mountain. / I want to bathe with you in the sea. / I want to lay like this forever. / Until the sky falls down on me

And when the stars are shining brightly / In the velvet sky,
I’ll make a wish / Send it to heaven / Then make you want to cry..
The tears of joy / For all the pleasure and the certainty.
That we’re surrounded / By the comfort and protection of
The highest power.
In lonely hours.
The tears devour you.

I want to stand with you on a mountain, I want to bathe with you in the sea. I want to lay like this forever, Until the sky falls down on me

Oh can’t you see it baby? You don’t have to close your eyes
‘Cos it’s standing right before you. All that you need will surely come.

I’ll be your dream / I’ll be your wish / I’ll be your fantasy.
I’ll be your hope / I’ll be your love / Be everything that you need.
I’ll love you more with every breath / Truly madly deeply do

American Sign Language is used throughout the US & Canada (although Canada also has Quebec Sign Language (LSQ: (langue des signes Quebecoise) & Maritime Sign Language).

This video features a variety of people Signing Michael & Janet Jackson’s Scream. The video is subtitled, and lyrics follow:

lyrics:

[Michael]
Tired of injustice / Tired of the schemes/ The lies are disgusting
directed at me.
Kicking me down/ I got to get up / As jacked as it sounds
The whole system sucks

[Janet]
Peek in the shadow / I Come into the light / You tell me I’m wrong
Then you better prove you’re right
You’re sellin’ out souls but / I care about mine/ I’ve got to get stronger
And I won’t give up the fight

[Michael]
With such confusions don’t it make you wanna scream
You’re bash abusin’ victimize within the scheme
(Janet)
You try to cope with every lie they scrutinize
[Both]
Somebody please have mercy / ‘Cause I just can’t take it
Stop pressurin’ me / Just stop pressurin’ me/ Stop pressurin’ me
Make me wanna scream
Stop pressurin’ me / Just stop pressurin’ me/ Stop pressurin’ me
Make me wanna scream

[Michael]
Tired of you tellin’ the story your way / It’s causin’ confusion / You think it’s okay

[Janet]
You Keep changin’ the rules / While I keep playin’ the game / I can’t take it much longer / I think I might go insane

[Michael]
With such confusions, don’t it make you wanna scream / Your bash abusin’ victimize within’ the scheme
(Janet)
You find your pleasure scandalizin’ every lie
[Both]
Oh father, please have mercy ’cause I just can’t take it
Stop pressurin’ me / Just stop pressurin’ me / Stop pressurin’ me
Make me wanna scream
Stop pressurin’ me / Just stop pressurin’ me
Stop fuckin’ with me / Make me wanna scream

[Janet]
“Oh my God, can’t believe what I saw / As I turned on the TV, the city
I was disgusted by all the injustice / All the injustice”
[Michael]
“All the injustice”

[News Man]
“A man has been brutally beaten to death by Police after being wrongly identified as a robbery suspect. The man was an 18 year old black male…”

[Michael]
With such collusions don’t it make you wanna scream / Your bash abusin’ victimize within the scheme
[Janet]
You try to cope with every lie they scrutinize
[Both]
Oh brother please have mercy ‘Cause I just can’t take it / Stop pressurin’ me
Just stop pressurin’ me / Stop pressurin’ me/ Make me wanna scream
Stop pressurin’ me / Just stop pressurin’ me / Stop pressurin’ me
Make me wanna scream / Stop pressurin’ me
Just stop pressurin’ me / Stop pressurin’ me / Make me wanna scream
Stop pressurin’ me / Just stop pressurin’ me / Stop pressurin’ me
Make me wanna scream / Stop your pressure!

(lyrics from Elyrics)

British Sign Language is used throughout the UK. I first learned about it by watching Paddy Ladd’s vids.

This guy is Signing Lady GaGa’s Poker Face (subtitles, lyrics follow):

Lyrics:

Mum mum mum mah / Mum mum mum mah

I wanna hold em’ like they do in Texas please / Fold em’ let em’ hit me raise it baby stay with me (I love it)/ LoveGame intuition play the cards with Spades to start/ And after he’s been hooked I’ll play the one that’s on his heart

Oh, oh, oh, oh, ohhhh, oh-oh-e-oh-oh-oh / I’ll get him hot, show him what I’ve got
Oh, oh, oh, oh, ohhhh, oh-oh-e-oh-oh-oh, / I’ll get him hot, show him what I’ve got

Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)

P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)

I wanna roll with him a hard pair we will be / A little gambling is fun when you’re with me (I love it)
Russian Roulette is not the same without a gun / And baby when it’s love if its not rough it isn’t fun, fun
Oh, oh, oh, oh, ohhhh, oh-oh-e-oh-oh-oh / I’ll get him hot, show him what I’ve got / Oh, oh, oh, oh, ohhhh, oh-oh-e-oh-oh-oh,
I’ll get him hot, show him what I’ve got

Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my / Can’t read my / No he can’t read my poker face
(she’s got me like nobody)

P-p-p-poker face, p-p-poker face (Mum mum mum mah)
P-p-p-poker face, p-p-poker face (Mum mum mum mah)

I won’t tell you that I love you / Kiss or hug you / Cause I’m bluffin’ with my muffin / I’m not lying I’m just stunnin’ with my love-glue-gunning / Just like a chick in the casino / Take your bank before I pay you out / I promise this, promise this / Check this hand cause I’m marvelous

Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my / Can’t read my / No he can’t read my poker face
(she’s got me like nobody)

Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)

Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)
Can’t read my, Can’t read my / No he can’t read my poker face
(she’s got me like nobody)

P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)

P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)

P-p-p-poker face, p-p-poker face / (Mum mum mum mah)
P-p-p-poker face, p-p-poker face / (Mum mum mum mah)

(Lyrics from azlyrics)

I Can’t Handle Celebrity Suicides

There’s been a couple of recent high-profile celebrity suicides.  Earlier this month, celebrated fashion designed Alexander McQueen hanged himself in his London home at the age of 40. Then this week, actor Andrew Koenig was found dead from suicide in Vancouver after being missing for several days.  These are just the most recent – there’s also David Foster Wallace, Spaulding Gray, Kurt Cobain, Ian Curtis, back to Diane Arbus, Anne Sexton, Sylvia Plath.

Of course, there are a lot of people who commit suicide who don’t make international headlines and don’t get websites doing slideshow retrospectives of their careers and bodies of work. But I don’t always know about those – it’s only the celebrities or the dramatic suicides (burning down a house while inside it to avoid foreclosure, for example) that come to my attention through the media. And every single time it happens, it stops me in my tracks.

These events remind me that the monster of depression can always get you. No matter how creative and inspired you are. No matter how much admiration and respect you earn from the fashion industry, the music industry, the world at large. No matter how privileged and rich you are. No matter how well known your struggles with depression are, no matter how many friends and strangers love and support you, no matter ho many people feel your loss. No matter how many years you’ve spent running from the monster. It can always catch you. It can always kill you. You are never and can never be safe.

I follow the twitters and blogs of a lot of alternative comedy people and the past week has been filled with concern about Koenig’s disappearance and ferverent please for help in finding him and making sure he was ok. This is even more notable from the comedy crowd who tweet only silly and humorous things and have essentially broken character to express their concern and love for Koenig. While I realize I can’t tell whether Koenig had actual love and support in his life just from reading a tweet from Doug Benson, I can see that there was a network of people who were really worried about him and who seem deeply affected by his loss.

If I committed suicide, it wouldn’t make any headlines. I’ve done a lot of work of which I’m very proud, but it wouldn’t be reviewed and featured on the Huffington Post. And certainly a generation of people wouldn’t have vivid memories of where they were when they heard about my death, as exists for Cobain. (I was in a car with my dad on Folsom Ave. in Boulder, C0lorado, driving south, when I heard it announced on the radio.) So the fact that the monster overtook these celebrities makes me feel even more vulnerable to succumbing.

Everything they did, everything they had, it didn’t help them. Couldn’t save them. What chance do I have?

I’m not here for your inspiration

I think I upset one of the newer employees at my favourite tea shop today. Most of the staff are used to my cynical reactions to newspaper discussions of how inspiiiiiiiiiiring people with disabilities are at this point.

But let me begin at the beginning.

Actually, no, let me begin with something important, since recent events have told me one cannot be too careful.

There is a certain way news media prefers to talk about people with disabilities. They like to tell our stories in a way that’s “inspiring”, that’s about making non-disabled people feel better about stuff. “Oh, look at how brave that person is, being all alive and stuff despite having a disability! I would rather be dead! That person/their parents/their loved ones are so brave and inspiring! I will now put issues of accessibility and disability out of my mind, because I have been inspired!”

These stories aren’t really about people with disabilities. They’re about making currently non-disabled people feel they know something, that they’ve been touched, that their lives could be suffering and badness, but look how lucky we all are. Look at the plucky crippled person, and be inspired. [This is, of course, why Helen Keller is reduced to “hand in water” stories.]

There are, of course, reasons why people with disabilities and their families participate in these stories, and I certainly don’t blame them. I know if someone offered to interview… wait, I’ve been interviewed a few times now about disability, and I did leap at the chance. I don’t think that people who are interviewed for these stories are doing anything wrong. They’re talking about their lives, and describing their experiences. No, it’s the way that these things are spun, the words being used by the reporters to fill in the gaps, that is the problem.

The tendency is so very very wide spread that Haddayr (with the help of Codeman) made a bingo card for us all:

Description follows

Description written by Haddayr:
Are you writing an article that profiles or even tangentially involves a disabled person? Make it easy on yourself: string together these words and phrases with a few voyeuristic references to the person’s body parts, and call it a day!

She didn’t let her disability stop her!
Differently Abled/Handi-capable/Challenged/Some other twee or awkward phrase
Forced to use [mobility device]
Thought she would never get to [some activity most of us never get to do]
Courageous battle
He relies on [friends/a guide dog. No fair using electricity!]
Confined to a wheelchair
Then tragedy struck/her dreams were shattered/the unimaginable happened
. . . wants to help others [the ‘bless him’ is inferred]
Will never again see his childrens’ faces/hear them say ‘I love you’ canoe the boundary waters/run a marathon
Can only communicate through [communication device]
Cheerful/ Never let it get her down/ Positive attitude
Free Space:
BRAVE & INSPIRATIONAL!!!!!!!!!!!!!!!!!!!!!!!
Through the miraculous assistance of [something completely non-miraculous]
She refused to give up/give in/succumb
Defying overwhelming odds
She ‘suffers from’ [impairment]
If you saw her sitting down/lying still/riding the bus, you would never know that she has a disability…
[insert some pseudoscience]
Determination
Most of us could never imagine [horrific impairment] happening to us, but…
Every day she has to [take some medication/do some physical therapy]
Special
He has overcome his disability!
. . . proving you can achieve anything if you really try!

So, let’s go back to my story.

I haven’t been following anything to do with the Olympics for reasons I won’t go into here, but I knew exactly what was going on when I glanced at Saturday’s Globe & Mail and saw this splashed across the front:

A Different Victory: When Alex Bilodeau’s brother cheered his gold, the triumph went more than one way. The skier and the painter find inspiration in each other – and neither one accepts limits. Ian Brown travels to the intimate heart of a family.

“Oh gosh!” I said to Don, in my overly chirpy sarcastic voice. “It’s going to be an inspiring crip story, I just know it! Quick, let us purchase this fine newspaper so we can be inspired!”

Poor dude behind the counter proceeded to tell me how inspiiiiiiiirng he found “the brother of the guy who won gold”, to which my response was… less so. “Inspiring crip stories irritate the fuck out of me.”

You know what would inspire me, gentle readers? Curb cuts being cleared of snow so Don & I could get across the street without having to go three blocks out of way first. But I guess when you’re a bitter, cynical, angry person who just hates fun, that’s what you get.

Sadly for all of us, Ian Brown’s articles don’t seem to appear on the Globe & Mail’s website (except perhaps behind the paywall), so I can’t let you read the inspiriiiiiiing story of Frédéric Bilodeau, but I can show you a BINGO card that Don & I filled out while we read it.

Description follows

Description: As above, but with the following squares circled:
Differently Abled/Handi-capable/Challenged/Some other twee or awkward phrase
Forced to use [mobility device]
Then tragedy struck/her dreams were shattered/the unimaginable happened
Will never again see his childrens’ faces/hear them say ‘I love you’ canoe the boundary waters/run a marathon
Cheerful/ Never let it get her down/ Positive attitude
Free Space: BRAVE & INSPIRATIONAL!!!!!!!!!!!!!!!!!!!!!!!
She refused to give up/give in/succumb
If you saw her sitting down/lying still/riding the bus, you would never know that she has a disability…
Determination
Special
He has overcome his disability!

Of course, what Frédéric Bilodeau’s story has actually managed to inspire is awesome comments at the Globe & Mail like this one:

Proud for so many reasons

Alexandre Bilodeau has provided something more than his magnificent gold performance (Gold Comes Home – Feb. 15). He has provided an example of the role that individuals with a disability play inspiring us as they overcome their challenges.

Thank you, Alex and Frédéric.

Brian Smith, Toronto

Mr Smith, with all due respect, we are not here to be your thrice-damned inspirations thank you very much. Be inspired! Lobby the Canadian government to provide funding for all universities to be fully accessible to people with disabilities! That would help lots of people with disabilities overcome their challenges!

The point of this post isn’t “here I am, talking about an article you can’t read, and being as sarcastic as possible, aren’t I witty?”. It’s actually to talk seriously about the way disabled people are written about. We’re allowed to be inspiring stories of overcoming adversity – and often those stories focus on the difficulties our loved ones have, and how hard it can be to have a disabled person in your life – or we can be a passive victim of crime. That’s it.

If new media actually presented people with disabilities as we actually are… well, that, gentle readers, would be actual news.

ETA: facesofcathy found that Ian Brown’s article’s up over at CTV. (Why? I don’t know.) Check it out: The Bilodeaus: Elusive truths from an unforgettable family. I haven’t done a side-by-side comparison of the text (I think the headings are different?) but it look pretty close.

Check out the comments if you like to headdesk over how inspiiiiiiiired people find these types of stories.

Who Killed Civil Discourse? Evelyn Evelyn, Marginalization, and Internet Discussion

Hello. I am Annaham (yes, I have a name). I am the person who posted a critique of Evelyn Evelyn on this website, which kicked off something of an internet controversy. For those who’ve just joined us, I made a post about Amanda Palmer and Jason Webley’s side project Evelyn Evelyn, Lauredhel made another post soon after, and things got a little out-of-control, to say the least. Because my post was part of this whole storm of various substances — both gross and not — I feel some responsibility to share my reaction to what’s gone down thus far.

I’d like to take a moment to talk about some basic principles of anti-oppression activism and social justice work that intersect with the work we do here at FWD, as some very specific structural issues and contexts are absolutely relevant in this discussion. Often, marginalized people are encouraged and expected to be sensitive and accommodating to the attitudes and prejudices of the dominant culture and to those of less-marginalized (ie: more privileged) people. However, this sensitivity and accommodation usually does not run both ways. Marginalized people, if they criticize something that (for example) leaves them out or makes them feel awful, are often told that they are being overly sensitive or overemotional, that they just misunderstand intent, that they are exaggerating, or that their tone is not polite enough. They are then expected to modify their behavior — and their self-expression —  to fit with the norms and values of those who are more privileged.

What the less-privileged have to say is usually not accorded much importance, critical thought, or respect, and yet they are supposed to prioritize, be patient with, and generally assign more importance to views, values and norms that are not their own. People in marginalized communities are often expected to educate the more privileged majority. They may be expected to patiently explain basic concepts, sometimes repeatedly. And if those with more privilege decide that they do not agree (with the less-privileged group’s tone, focus, or any number of other things other than the actual argument that is being made), those with less privilege are told, with varying degrees of subtlety, to shut the fuck up.

All the while, the perspectives, attitudes, norms and values of those with more privilege are made neutral. The power dynamics are rendered invisible, because that’s just the way things are, so there’s no point in trying to change any of it. Why are you so angry?  You’re just looking for things to get mad about. You just like being offended. Why can’t you focus on other/more important things? It wasn’t meant that way. You need to hold your tongue until you’ve done x, y and z. Quit taking it personally. You’re ruining everyone’s good time. Stop trying to make everyone pay attention to your pet issue, because it doesn’t affect anyone other than you. Your demands are unreasonable. Stop complaining. Shut up.

And when things don’t go entirely smoothly (which happens often), those not in a position of privilege are often blamed for it: Well, what did you expect, using that tone? You’re the one who brought it up; you’re the one who rocked the boat.

Unfortunately, these tactics are extremely common when it comes folks’ objections against many sorts of media and pop culture critique and/or backlash against critical engagement with cultural works. In other words: These are not new patterns.

I am definitely not saying that everyone has to agree with the critiques that I and others have made regarding Evelyn Evelyn; I am not suggesting that ideological lockstep is a worthy end-goal. What I am saying is that the humanity of marginalized people — those who have traditionally been left out, and who are often on the receiving end of justifications for said exclusion(s) — is not up for debate. The humanity of the participants in this discussion — that of the creators/artists, fans, and those of us who have come forward with critiques — is similarly not up for debate. What I posted, and what I am posting here, was (and is) my take on the matter. I do not, nor do I want to, claim to speak for all PWDs, or all disabled feminists, or all fans of AfP and/or Jason Webley who are also disabled or feminists, or both. We all have our different takes on Evelyn Evelyn and how things have unfolded, and I think it is a good sign that so much discussion has come from this.

As I have stated here on FWD and elsewhere, I am a fan of AfP and have been for a number of years. Many of the people who have raised concerns about Evelyn Evelyn are fans, potential fans, or former fans (and there have been solid points raised by non-fans, too). Dreamwidth’s Anti-Oppression Linkspam community has, at present, four roundups collecting posts on the matter from around the web.  I suspect that many of us who have posted on the Evelyn Evelyn project with a critical eye are not raising these concerns simply to bug or irritate Amanda and Jason, or their fans. However, there are quite a few people who seem eager to dismiss those of us with legitimate concerns as “haters” who just don’t understand art. The hostile messages from “haters” that Amanda has received are not legitimate critiques. These are personal attacks, not arguments of substance.

I almost feel like it should go without saying that I do not support people making these attacks on Amanda, but just to make it very clear: I am very much against people using this controversy — and the complex issues raised — as a bandwagon upon which they can leap to make personal attacks and/or comments about Amanda’s personal life or who she is. Unfortunately for those of us who have been trying to bring attention to Evelyn Evelyn-related issues and seriously discuss them, the “haters” are distracting from these same issues (and are apparently effective at it). I have also heard that people are making threats of physical violence against Amanda. That is not okay. It is never, ever acceptable to make threats of violence against anyone, regardless of your disagreement. That is basic human decency. It is truly disheartening to me, and to the other FWD contributors, that some are using this very difficult situation as an excuse to make horrific threats. We fiercely condemn these attacks.

One of the comments I received was from someone who, as far as I can tell, thought that my post seemed “insincere,” with a bonus implication that I was and am making other PWDs look bad “in the eyes of the abled.” Comments of this sort are often aimed at members of marginalized groups who are expected speak for everyone in their group when confronted; it basically boils down to “You are making other [disabled people] look bad.” I have to wonder why this same thing was not said to the AfP fans who found it necessary to show up here to derail, break out tone arguments,  tell me and my fellow contributors that we are crazy and/or should shut up, and who dismissed us on Twitter as just bitching about the project. It’s interesting, and rather telling, that some fans have used these tactics against me, my fellow FWD contributors, and other people who have critiqued the project, but could not (or did not want to) step back and consider their own behavior.

We were, in various other places around the web, called “retarded,” “angry bloggers,” had the legitimacy of our contributors’ disabilities questioned, and (trigger warning) threatened with rape (link goes to a screencap of a comment left on Amanda’s blog) — among many, many other things. In the comments thread to my original post, I was told that I need to focus on more important issues, that I was blowing things out of proportion, that I was censoring people and/or trampling on their free speech rights by laying out guidelines that specifically told potential commenters  to not leave derailing comments,  and that intent should excuse offensiveness. Eventually, I lost my patience.

There were also quite a few personal-attack comments left in the moderation queue; for obvious reasons, these were not published. These attacking comments were a significant part of why I closed comments on the post, though I did not explain that in my final comment. My decision was not about “censoring” what anyone had to say, or infringing upon “free speech” rights (this is a private website — one that has contributors, commenters and readers who are not only from the U.S.), or only about the fact that I lost my patience after having explained certain concepts over and over again; I and my fellow contributors simply could not deal with the personal attacks, threats, and violent language being left in the mod queue anymore.

Here is just a sampling of some of these unpublished comments from the mod queue (possible trigger warning):

“What’s the matter with you?”

“cant handle it? then just fucking die!”

“fuck u die slow nigga!”

“ONOEZ SOMEONE WANTED TO SMACK SOMEONE SUCH VIOLENCE!!! Typical retarded comment on an idiotic, stupid, moronic, weak, and lame blog. Fucking oversensitive twits.”

I think there is something analogous here to some of the more hateful comments that Amanda received on Twitter and elsewhere, but that is a bit of a tangent.

Going through the mod queue for that post was not an experience that I would want anyone to have. I could talk about the fact that it got to the point where it exhausted me to look at the comments; about the extreme anxiety and emotional hurt I felt while reading some of the comments that attacked me as an individual and/or questioned my mental health status; about how it feels to notice that your physical pain level — already there as a result of a chronic pain condition — goes up a few notches as you read criticism(s) directed not at your argument, but at you. I have a feeling that were I to discuss this in depth, some would likely construe it as “ANGRY BLOGGER BLAMES AMANDA PALMER FANS FOR HER OWN PAIN” or accuse me of using my disability as an excuse for being “too sensitive.” I get more than enough of that outside of the blogosphere.

I need a break from having attempted to be civil and polite and explain very basic concepts to a select few people who have no interest in substantially engaging with me or with others who have raised concerns about Evelyn Evelyn.  Simply put, I need some time to recharge my politeness batteries, as well as my hope that some people — and I include many of Amanda’s fans in this category  — do want to listen, learn and discuss without derailing or attacking. I wish I could address every critique that’s come our way, but I am pretty worn out (and I suspect that many of you — disabled and not — know the feeling).

In the interest of full disclosure, I should mention that Jason and I have been communicating via e-mail — he emailed me shortly after my other post went live — and discussing many of these issues in more detail; for that, and for his willingness to engage, listen, and consider the critiques that have come up, I thank him.

I wish Amanda and Jason success with their endeavors; I do not wish to shut either of them up or, worse, endorse that Evelyn Evelyn not go forward at all. There is, as I have said, quite a bit of difference between critiquing a portion of someone’s work and wanting to shut them up or silence them; I have aimed for the former. I ask, however, that they engage critically with and take seriously the numerous points that have been brought up, both about (trigger warnings apply to the first two links) specific aspects of the project and the response to critiques so far. Taking on such huge issues will doubtlessly be a difficult and ongoing process. Of course, Amanda and Jason will probably interpret all of this in different ways. What happens next does not have to be “perfect” — nor 100% Annaham-approved (because that would be unrealistic and silly), but it would be fantastic for these two very talented musicians and performers to bridge the gaps between their good intentions and what actually shows up onstage and on the album.

What are the ultimate lessons here? What can people on all sides of this discussion take away? Right now, I don’t know, and for the moment, that is okay with me. I still believe that better things are possible. I refuse to give up that hope.

[Special thanks to meloukhia for ou’s help in putting together links and other material for this post.]

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The Island That Heals: Lost, John Locke, and Disability

Note: This post contains discussion of Lost through season six, episode four, “The Substitute.” That means it is full of spoilers! You have been warned.

John Locke is one of the most central and interesting characters on ABC’s Lost. He is a character with whom I personally struggle as a viewer, especially as a disabled viewer with a critical eye to the depiction of disability on television. And, honestly? I don’t know quite how I feel about John Locke, and probably won’t until Lost concludes, but I’d like to take a gander at writing about him anyway, especially in light of this week’s Locke-centric episode.

And I should note that there is a huge body of myth and theory about John Locke. He’s a character who clearly grips viewers and is intended to. And I am well aware that there are probably some aspects of Locke Theory which would disagree with how I view his character, but I’d like to focus on how I perceive him as a viewer, rather than quickly becoming entangled in conflicting theories. Mainly because, I admit, I have not read a lot of the theory and I don’t want to try to delve into it now.

Continue reading The Island That Heals: Lost, John Locke, and Disability