Category Archives: invisibility

Oh Canada: This week in Canada & Disability

anna rants, autonomy, bodies, disability activism, invisibility, representations, television, , , , , , , , ,

It’s been an interesting week or so in Canada regarding issues around disability. “Interesting” here means hit and miss.

I could, for example, direct you to the coverage of the Paralymic Games, but that site appears to be inaccessible to screen readers. It’s very busy, and has a lot of flash on it. There’s an audio slide show – the first I’ve ever come across – but you need to download something in order to run the audio.

So, hit and miss there, I guess.

Of course, then we get this story: No sugar-coating for disability exhibit: Co-curator’s trip out west parallels struggle to overcome obstacles in Out from Under

For disability rights activist Catherine Frazee, the personal overlaps with the political even when she doesn’t intend it.

That happened with Frazee’s recent journey to Vancouver from Toronto for Out From Under, a unique exhibition on the social history of disability in Canada.

As one of its three curators, she felt it was important to be here for the exhibition’s opening during the Paralympic Winter Games.

Frazee, the director of Ryerson’s Institute for Disability Studies, can’t fly for medical reasons having to do with living with spinal muscular atrophy, a genetic neuromuscular disease characterized by the degeneration of the motor neurons. When she travels, she is accompanied by an attendant and Patricia Seeley, her life partner.

The only option for her was to take the train.

Frazee was willing to make sacrifices to travel out west, such as sleeping in her electric wheelchair. She can’t be separated from her wheelchair, which is uniquely customized to her body’s needs. At times, for example, she has to tilt it slightly back to help with her breathing.

When she contacted Via Rail, she was told that she and her wheelchair had to travel separately.

Of course she was. *headdesk*

The exhibit itself sounds amazing and I wish I could see it. But it’s telling to me that in my country, where politicians regularly tell me they really care about the needs of people with disabilities, it’s impossible for Catherine Frazee to travel to Vancouver. Ultimately, she and her partner traveled through the US, where the Americans with Disabilities Act, as poor as it may be, still required that there be train cars that Frazee be able to use.

Or another hit and a miss: Promoting rights of disabled new foreign policy focus: Cannon

Promoting the rights of disabled people around the world will become a key foreign policy focus for Canada, Foreign Affairs Minister Lawrence Cannon said at the United Nations Thursday.

Cannon made the declaration after delivering Canada’s ratification of the world body’s Convention on the Rights of Persons with Disabilities.

Awwww. Isn’t that awesome?

Meanwhile our Prime Minister held a TalkCanada event that was inaccessible to blind or partially sighted people.

Yesterday morning Prime Minister Stephen Harper performed a first, by being the first Canadian Prime Minister to have his remarks streamed live through YouTube. Before and after the PM’s speech, and up until Sunday at 1:00pm ET, Canadians can login to the Talk Canada YouTUbe page to submit and vote on questions, which the PM will answer in another live stream on Tuesday.

As a completely blind Canadian and an Information and Communications Technology Accessibility Consultant (I help make information systems work for persons with disabilities), I take exception to the PM using technologies such as YouTube and Google Moderator (used for the questions and voting). These technologies were poorly accessible to me, and to other blind and partially sighted Canadians, including Derek Wilson who wrote about the barriers he faced. This is not the way that things need to be, it would have been very possible, should the PM have cared, to make the Talk Canada event easily accessible to a much wider range of Canadians, including the blind and visually impaired.

[I also have no idea if the actual videos will be subtitled, Signed, or a transcript provided.]

Oh, and Canada continues to refuse immigrants when family members have disabilities. The only ‘hit’ there is that we’re talking about it, I guess, since it’s been going on forever.

I’m frustrated. Politicians, business owners, school officials, everyone tells me that they really care about the needs of people with disabilities. They often do grand gestures: Ooh, we’ll show highlights from the Paralympic Games! We’ll agree that yes, we’re going to support the needs and rights of people with disabilities in other countries! We’re going to put in a Student Accessibility Services Office (because all people with disabilities on campus are students) and that will solve all the problems!

What we won’t do, apparently, is ensure that people with disabilities in Canada can get from Nova Scotia to Vancouver with minimal fuss and drama, like the currently non-disabled can. We won’t discuss how inaccessible politicians are to people with disabilities. We will express disdain that the laws in Ontario now require universities to be accessible to students before students spend months or even years self-advocating. We will approve bursaries for students purchasing equipment that helps them write their essays and do their school work in February – 6 months into the Academic year.

Oh Canada. Please do better.

A Conversation in the Lunch Room

101, i'm right here, invisibility, mental health, othering, relationships, representations, social attitudes, Uncategorized

I was sitting in the lunch room at work with a group of co-workers, flipping through the newspapers. I came to an article on the suicide of Marie Osmond’s son, which led to the whole table discussing the incident. And it was immediately underlined for me how little most people know about mental illness and depression. Here’s a brief list of some of the questions and statements that came up during the discussion, the entirety of which I spent shrinking into myself and trying to be invisible:

  • “Is depression even a real disease?”
  • “People who commit suicide don’t really want to die – evolution wouldn’t let us have suicidal tendencies because it goes against survival.”
  • “It must be because his mom had mental health problems too.” Someone inquired if depression was hereditary and the original speaker replied “No, but being around depressed people can turn you into a depressed person.”
  • “I once knew a bipolar. She married my cousin and my mom got so mad, like you should never marry a bipolar because it’s not a good idea for them to have kids.”

Finally, a young man told a long story about his ex-girlfriend, who had experienced major depression, and how it affected her and the serious limitations it caused her. It was a great illustration of the reality of depression and the changes it can cause in day to day life. It was unfortunately concluded with a “so that’s why you can’t be in a relationship with those people, it’s just too hard.”

We’ve got a long way to go, y’all.

This is Why We’re Always on about Language

invisibility, justice, language, othering, , , , , , , ,

I’m not linking to the original source because the specifics don’t matter. This isn’t about the individual people or the individual documents involved. This is just an example of how the use of ableist language harms disabled people. Sometimes our posts on ableist language are on the abstract side, so here’s something real concrete. The ableist language is “insane” used to mean “this is bad.” The disabled people are me and everyone else who has been abused and has mental illness.

Some context is necessary, though. The first quote is from the comments thread of a post on intimate partner abuse. More specifically it’s about the way people outside the abusive relationship contribute to the abuse. Even staying “neutral” or “not getting involved” contributes to the abuse: when power is unequally shared among people in a relationship, staying neutral is siding with the person with the most power. But much of the time people don’t stop with that much. They actively side with the abuser. (The reasons for this is a subject for another post. Graduate degree dissertations. Books. I’m headed in a different direction right now.)

One of the commenters expressed disgust with the people who’d taken the side of the abuser and ended the comment with:

How insane is that?

Here’s my reply.

It is appalling, frustrating, disappointing. It makes me want to cry every goddamn time I see it because I know my abusers are fine upstanding successful people and I’m fucked up and broken and poor.

It is not insane.

I am insane. I have had delusions and paranoia and hallucinations. There are parts of me I do not talk about ever because I am deeply ashamed of them: what’s wrong with me that this is in me? How can I be this fucked up? I spend every day working on not killing myself because the parts of me that hate me and want me dead never shut up.[1. Unfortunately, none of this is even exaggerated.]

I would like, please, to not have to be the metaphor for abusers and their abettors as well as their victim. I carry enough shame already.

This is why we talk about ableist language. It’s not because we hate fun. It’s not because we have no sense of humor. It’s not because we want to take people’s words away.

It’s because we shouldn’t have to be the metaphors for our own oppressions.

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

activism, bodies, creative work, feminism, i'm right here, identity, intersectionality, invisibility, justice, marketing, media and pop culture, meta, normality, othering, representations, social attitudes, Uncategorized, , , , , , , , , ,

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 round–ups 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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Who Shall Remain Nameless: The Othering of PWD

invisibility, language, othering, politics, representations

Julie Petty.

Ricardo Thornton.

These are the names of the self-advocates who joined Special Olympics CEO Shriver and others in asking Rahm Emanuel to apologise for his use of the R Word, and to join the R-Word campaign (the original R-Word campaign is here).

But you’ll be hard pressed to find that info in most of the papers. They’ve been erased. Relegated to “other…”.

A P.S., at best.

What we’re hearing, instead, is that Emanuel apologised to Shriver, and Shriver accepted his apology. A few examples:

LA Times:

[Emanuel] apologized and met privately this week with half a dozen advocates for people with disabilities, including Timothy Shriver, chairman and chief executive of the Special Olympics.

HuffPo (who also published “Rage Against Rahm Was, Well, “Retarded”“, by a “humourist”):

Special Olympics Chairman and CEO Timothy Shriver personally accepted an apology from White House Chief of Staff Rahm Emanuel on Wednesday, days after comments surfaced in which Emanuel used the word “retarded” to describe a proposal made by a group of liberal Democrats.

According to a joint statement from Shriver and five other disability advocates who attended a meeting at the White House, Emanuel “sincerely apologized for his mistake and the pain it caused in our community.”

ABC News:

After the Journal story was published, Emanuel called Special Olympics Chairman and CEO Timothy Shriver to apologize.

Shriver and four other advocates for the disabled community will meet with Emanuel at the White House at 2:00 PM tomorrow, Wednesday February 3, 2010.

New York Times:

Mr. Emanuel apologized to Tim Shriver, the CEO of the Special Olympics, but today went one step further, by meeting for about 30 minutes in his West Wing office with Mr. Shriver and other advocates, including leaders of groups like The American Association of People with Disabilities and The Arc, which changed its name nearly 20 years ago from the Association for Retarded Citizens.

Washington Post:

In a statement after an afternoon meeting at the White House, Shriver and five other disability rights advocates said Emanuel had “sincerely apologized” for the earlier comment during a strategy meeting, which was reported in the Wall Street Journal.

Disability Scoop:

Special Olympics CEO Tim Shriver, Andrew Imparato of the American Association of People with Disabilities and Peter Berns, CEO of The Arc of the United States, were invited to the White House meeting. Two self-advocates and a parent advocate are also expected to attend.

Telegraph UK:

After a White House meeting, Mr Emanuel apologised to Tim Shriver, head of the Special Olympics, and other advocates for the mentally disabled.

The exceptions: The Wall Street Journal, and CBS. Kudos.