Category Archives: activism

Either/Or – Both/And

12 February, 2010activism, bodies, disability activism, social attitudesAnna

One of the ways mainstream media talks about things is in binaries. People are either book readers or they read nothing at all, for example. Women are either sluts or they aren’t having any sex at all.

People are either caregivers or they have disabilities and thus are cared for.

Or so I keep hearing.

So, when we talk about needs relating to children with disabilities, somehow the idea that there may be parents with disabilities who are primary caretakers for these children is missed. When we talk about caring for elderly or disabled parents or extended family members, we don’t talk about how to do that if you are also disabled. Because people with disabilities are cared for, right? You can’t be both cared for and caring for someone, right? Right?

Right now, I’m getting a lot of literature sent my way about “caring for” a spouse with Cancer. That literature will often include the information given by Family Caregiver Network Society: “We understand the common feelings of isolation, helplessness, exhaustion, stress, anger and guilt faced by family caregivers.”

All of that is often true for caregivers. But for some of us, that stuff is unrelated to being a caregiver because it comes from our status as people with disabilities in the first place.

I think this feeds into the ideas of disabled people as passive receptors of whatever, who never act on their own, who can’t act on their own, and whose only stories are those of being a burden. These perceptions feed into how and what support is given to families affected by disabilities that have long-term caring needs, what accommodations are made for meetings with caregivers (I was invited to a meeting in a space that isn’t wheelchair accessible, for example), and basically how society views everything to do with being disabled. Suddenly, your whole life is perceived as a burden to others, with nothing to live for and nothing to look forward to.

I know there are readers of this blog who are disabled and care for others, either in their homes or workplaces. I want to talk about how we are both disabled and carers. [1. ETA: It is not my intention to imply that if you are not both/and in this case, you are somehow a burden or not worth talking about, or ruining it somehow for everyone else. I am just focusing this particular discussion on that bit of intersectionality.]

ACTION ITEM (United States): Ask your rep to co-sponsor the Technology Bill of Rights for the Blind

1 February, 2010activismAnna

If there’s an action item you’d like to draw our attention to, please email us with a tip.

I received the following via email today:

National Federation of the Blind Applauds Measure To Ensure Blind People Equal Access to Technology

Washington, DC (January 27, 2010): Representative Jan Schakowsky (D-IL) today introduced the Technology Bill of Rights for the Blind (H.R. 4533), which will mandate that all consumer electronics, home appliances, kiosks, and electronic office technology provide user interfaces that are accessible to the blind.

Dr. Marc Maurer, President of the National Federation of the Blind, said: “The National Federation of the Blind appreciates the wise and decisive action taken today by Representative Schakowsky. In recent years, advances in microchip and digital technology have led to the proliferation of everyday products–such as dishwashers or copy machines–that have visual displays and other user interfaces that are inaccessible to individuals who are blind or have low vision. Inaccessibility of these devices is a major barrier to a blind person’s independence and productivity. The Technology Bill of Rights will ensure that manufacturers make their products accessible to all consumers, and that blind people will not be left behind as technology continues to advance.”

“The importance of access to technology in today’s society cannot be overstated. In many cases, a person’s livelihood depends upon the ability to use technology,” said Representative Schakowsky. “This bill will allow people who are blind or have low vision to compete on a level playing field with their sighted peers and remain productive members of society.”

This Bill is currently before the Committee on Energy and Commerce. It has no co-sponsors yet.

If you are living in the US, please considering contacting your representative and asking hir to co-sponsor Bill H.R. 4533, the Technology Bill of Rights for the Blind.

Write your Representative

Website Addresses for Representatives

Please pass the word to your friends and networks!

Lines in the Sand: Daly, Showalter and Tactics of Exclusion

9 January, 2010activism, autonomy, blaming, bodies, feminism, gender, identity, intersectionality, justice, language, normality, politics, shaming, social attitudesableism, chronic fatigue syndrome, disability is a feminist issue, disabled women, exclusion, feminism, i thought you were supposed to be my ally, intersectionality, LGBQTAI, privilege, problematic attitudes, social treatmentAnnaham

The second-wave radical feminist theologian and professor Mary Daly died earlier this month, and there has been a veritable outpouring of eulogies from various feminist blogs.

Few of these eulogies have acknowledged Daly’s transphobia and racism.

I do not deny that Daly was an important figure in second-wave feminism, but to mourn her passing without a nod to her work’s more problematic aspects, or explorations of these aspects, are, to put it mildly, not good. In particular, the intense, hateful transphobia found in some of her writing, and her issues with unexamined white privilege and racism — which both QueenEmily at Questioning Transphobia and Sungold at Kittywampus cover very well in recent posts — strikes many as both deeply disturbing and an old pattern that has, and continues to, rear its grotesque head in certain segments of contemporary feminism. I include myself among those who are deeply troubled by Daly’s transphobic sentiments and her questionable record when it came to examining the entrenched racism and issues surrounding white privilege in the second-wave feminist movement.

I should probably mention at this point that I do not mean to appropriate or co-opt the struggles of trans* folks in any way, although my cis privilege will most likely be unintentionally reflected at points in this piece. Though the struggles of trans* people, trans feminists and PWDs and disabled feminists are not the exact same, some exclusionary tactics of certain cisgendered feminists and those of abled feminists sometimes take similar forms, especially within the mainstream feminist movement. The oppression of trans* folks and PWDs in cis, abled culture intersect in a number of ways; this post, however, barely scratches that surface. I believe that the many issues present in Daly’s work–as well as the reaction to her death around the blogosphere–can serve as just one entry point to discussions of the similarities in oppression(s) that trans* people and PWDs face. There are also clear differences, among them the fact Daly used language that can only be called genocidal, while many other feminists of her generation did not advocate such an extreme path when it came to keeping certain individuals out of feminism. I will be focusing on feminism’s exclusion of trans* and PWDs as reflected in the work of two very influential second-wave feminists here, but there is, of course, much more to these stories.

Daly’s penchant for exclusion and outright hatred (particularly of trans* individuals) couched in oddly phrased academic rhetoric unfortunately brings to mind another famous second-waver’s similar issues with people (particularly women) with disabilities. Princeton scholar Elaine Showalter — best known for bringing feminist literary theory to the fore in the academy at a time when such a discipline was, for the most part, inconceivable — dismissed disabling conditions like Chronic Fatigue Syndrome, Gulf War Syndrome and mental health issues such as Dissociative Identity Disorder (referred to in the text as Multiple Personality Disorder) in her 1997 book Hystories.

In Hystories, Showalter attempted to debunk “modern media epidemics” such as the aforementioned disabilities as well as more traditionally disproven phenomena such as alien abduction and satanic ritual abuse. In the book’s chapter on Chronic Fatigue, Showalter rather disingenuously declared that she did not want to “disparage the suffering” of people with such conditions only a few pages before she called CFS an extension of Western “fin de siecle [end of the century] anxiety.” She followed this stunning assertion with the claim that the Western news media was primarily responsible for making CFS into an escalating “psychogenic epidemic” (117, 131).

Like Daly’s severe opinion of trans* people as dupes of the medical industry (which Kittywampus cites in her post), Showalter also seemed to be taken with the idea that people with CFS are somehow being duped into thinking that they are ill because of the media focus on their condition. She wrote that many CFS patients and their defenders are “hostile to psychiatric or social explanations” of the condition, and that many of them react in a way that is not friendly to the labeling of CFS as “psychiatric” (128). However, the reactions of these same patients make sense if considered from a non-abled perspective. Showalter also seemed completely mystified by these “hostile” reactions. If CFS is just a manifestation of “fin seicle anxiety,” as she contended (adding that “emotions have tremendous power over the body”) she seemed to push the conclusion — without any scientific or medical proof — that many people with CFS have somehow been brainwashed into believing they have it; thus, the media-driven “hysterical epidemic” has worked.

Nowhere are feminists with Chronic Fatigue Syndrome or related conditions consulted; the not-so-feminist implication here is that feminists with Chronic Fatigue Syndrome either do not exist or are just victims of a “hysterical” media-led epidemic and therefore cannot be “real” feminists. This is similar to how trans* feminists were erased, excluded and castigated by Daly as somehow not “real” women or feminists, and as benefiting from patriarchy in a way that “real” women and feminists could not. To put it crudely: This is exclusionary bullcrap, and it does not do trans* people, people with disabilities, feminists who fit either (or both) of these categories, or the feminist movement as a whole any favors whatsoever.

Exclusion is not radical. It has never been radical. It is, in fact, extraordinarily status-quo. No one should be able to arbitrarily pick and choose who “belongs” in the feminist movement and who does not, especially if those who are being excluded because of their gender identity, sexual identity or disability actively identify as feminist. Feminism should be for a wide variety of people; exclusion, however, is something that is not — and has never been — very feminist.

Author’s note: I will be moderating this thread with an iron fist; please have the courtesy to not try to tell me how Daly really was an ally to trans* folks, or how Showalter didn’t mean what she said about CFS *that* way, or that either author’s influence on the feminist movement somehow excuses their hatred and bigotry. Thank you.

[Cross-posted to Ham.Blog]

“Bad Activist” moments

17 December, 2009activism, disability activism, feminism, gender, identity, mental health, resistance, social attitudesabby jean

I read a blog post recently by a woman with muscular dystrophy and her experiences going out to eat in restaurants. The author mentioned how wait staff rarely give her a menu, or give her a children’s menu instead of the standard menu. When this happens, she often just looks on with her mom’s menu rather than asking the wait staff to give her her own adult menu. She described that as a “bad activist moment.” While I enjoyed and appreciated the rest of the post, and marveled at the ableism she routinely experiences – wait staff giving her a sippy cup to use?! – the idea of “bad activist moments” particularly stuck with me.

A “bad activist moment,” if I understand it correctly, is a potential opportunity to highlight ableism, educate TABs on the abilities of a PWD, and instruct people on the correct way to interact with a PWD. It could also apply in other contexts – the opportunity to highlight and correct patriarchal or sexist behavior, or racist behavior, or ageist behavior, or any number of other discriminatory and oppressive behaviors. In this context, the person experiencing or observing the problematic behavior is a member of the class negatively affected by such behavior, but it could also, for example, extend to me as a white woman observing behavior that discriminates against Latinos.

I definitely think this idea has value and recognize that the term “bad activist moment” is likely shorthand for “an identifiable moment of opportunity for direct personal activism that I didn’t take” rather than a judgment on whether the person is actually at heart a good or bad activist. But I’m concerned that framing it as a “bad activist moment” suggests that to be a good activist, we must speak up and speak out Every Single Time we observe negative behavior, not just that affecting PWDs, but that affecting or oppressing any minority group or marginalized class. I know that I do not do this and if I did, I would likely suffer significant consequences. I feel I’m already on the edge of being characterized (and thus dismissed) as the girl who has a problem with everything and is hyper-sensitive on these issues and cannot in any way ever take a joke ever – and that’s with me pointing out about 1 in ever 10 problems I see. I worry that if I devoted more time and energy to those issues, I’d be pigeonholed as “politically correct girl” and nothing I said would be taken seriously or considered.

More seriously, though, it is infinitely more risky to raise issues of discrimination and oppression when you are part of the group that is being discriminated against or oppressed. Not only might this require someone who is “passing” to identify and out themselves, but explicitly claiming membership in the targeted group can lead to further discrimination and marginalization. In the racial context, it’s often characterized (and thus dismissed) as someone “playing the race card.” I’m not aware of a similar term in the disability context, but the trope of an “uppity” activist who “thinks they’re entitled to something” extends to all oppressed or marginalized groups. Identifying as such opens a person up to further attacks and discrimination and even physical violence.

Even without these very real risks, I believe that we should all allow ourselves the option to pass up potential opportunities for activism while still considering ourselves to be good and powerful activists. Even if all we did was live our lives as PWDs, that in itself would be an activist act, demonstrating that PWDs have interests, passions, relationships, emotions, LIVES. We would qualify as activists even if we passed up every single potential opportunity to do affirmative activism work.

My ultra-wise co-contributor Chally once told me that taking care of myself was a feminist act. Placing myself at the top of my priorities – even though I am a woman and “should” prioritize caring for others or building a family, even though I am a PWD and thus “have minimal value or worth to society” – is an act of activism. Can I do more than that? Yes, and I do, but I always try to keep in mind that my activism is and should be secondary to my own well being. In part because I’m not going to be able to do any activism at all if I burn out or hurt myself physically or mentally doing activism work. But also because the simple act of prioritizing myself is, in itself, activism.

So take the opportunities for activism that you feel you can. And let the others go by. And remind yourself at the end of each day that you were a good activist that day.

The frustration of incremental progress

12 December, 2009activism, identity, media and pop culture, mental health, social attitudesabby jean

The place I work does a lot of trainings for other organizations on health care programs. A number of health care programs are available only for people with long-term disabilities, so the trainings always include a fair amount of discussion of what disability is and who is disabled.

My organization is relatively progressive and puts a priority on protecting vulnerable populations. We have a section of the training talking about the government’s requirement to provide translation and interpretation services for people who do not speak English. We discuss programs for minor children who want to obtain family planning or pregnancy services without their parents being notified. We highlight the special rules for homeless people to work around their lack of a fixed mailing address or phone number.

When it comes to disability issues, though, there isn’t always the level of awareness and sensitivity that I would like. Recently, I was sitting with two co-workers talking about potential interactive activities to add to the training. One co-worker suggested making a poster with photographs cut out of magazines that we should show to the trainees and ask them to point out who is NOT eligible for Medicaid (the U.S. goverment health program for very low-income folks).

“We can use the photos to show them that people on Medicaid aren’t just homeless people pushing shopping carts on the street,” she said. “And it’s also good to remind people that you can’t tell someone’s disability status just by looking at them.”

“Yeah,” responded another co-worker. “It’s always good to remind them that someone could have a mental health disability or something like fibromyalgia that you can’t see just from looking at them.”

HURRAH, I thought. People who are aware of these issues of disabilities that aren’t immediately apparent by looking at a photo. People who want to include this information in a training, want to highlight it with an interactive activity, to make sure everyone understands that. This is progress. This is positive.

“We could Britney Spears and Lindsay Lohan on the poster,” my co-worker continued. “Nobody knew how crazy both of them were at first! I mean, who would have imagined that they were so totally loopy and unhinged? They’re SO CRAZY!” And then she and my other co-worker laughed and laughed.

I froze. Do I mention that we don’t actually have access to their medical records or diagnoses so have no idea what’s going on with them other than what’s reported in the not-at-all unbiased mainstream media and gossip columns? Do I mention that if we go by what’s been reported, I have the same diagnosis as Britney and could be considered just as “loopy and unhinged”? Do I distinguish between drug and alcohol problems and mental health disorders? Do I argue that laughing at people with disabilities that way undermines the message they’re trying to convey with the activity?

I didn’t say anything. I’d already used up a lot of my “humorless” allotment arguing against using an example of a welfare recipient as a single mother with 11 kids so felt that to make any inroads on this issue, I’d have to disclose my own status, which I just wasn’t willing to do. So I let it go by.

Incremental progress.

Not So Silent

6 December, 2009activism, bodies, introspective, social attitudes, violencecharles-antoine blais, chelsea craig, december 6th, katie-lynn baker, marc lepin, murder, tracy latimer, violence, violence against womenAnna

As I’m typing this, it’s the wee hours of the morning of December 6th. Today marks the 20th year since the Montreal Massacre, when Marc Lepin walked into the Ecole Polytechnique and murdered 14 women, blaming feminism for ruining his life. (He also injured 10 other women, and 4 men, before turning the gun on himself.)

Over the past 20 years, I’ve probably attended 14 memorials for the Massacre. The ones I’m most familiar with were the ones held at the first university I attended. There, we would gather in a solemn circle lit only by candles. 14 young women would each read the name of one of the dead, and blow out their candle, and we would mourn.

Last year I attended Halifax’s first “Not So Silent Vigil”. Instead of focusing on the murders in Montreal, this vigil was for all the women in Canada who have been victims of domestic violence. Speakers, singers, dancers, and even a hilarious feminist comedienne took on the subject of violence and sexism. There was a moment of silence, in memory of our dead. There was a moment of screaming, for the women who cannot or will not scream.

We have this memorial for gender-based violence every year. In recent years, national vigils have begun to remind us of dead and missing First Nations women (Sisters in Spirit Vigil [PDF]) There are vigils around the world for trans* men and women. We are beginning, slowly, to talk about how these different identities mean that some women’s deaths count, while others don’t merit more than page B3 in the local news.

The Not-So-Silent Vigil (last year) was a group project where many women representing many groups in Halifax came together and created a dramatic and moving experience. I found it to be inclusive of First Nations women and Africa-Nova Scotian women, although others may have different opinions.

It was until I was walking home with Don that I realised that there had been no mention of women with disabilities.

I don’t fault the people behind the Vigil for this. They did a lot of hard work to bring together the groups that they did, and I have no idea if more people will be involved this year, if women with disabilities will be included. (If not this year, then I should get myself involved for next year – I think the women who do this work every year take on a great deal, and I wouldn’t want to ask them to do more than they already are.)

But I also wonder – would it be controversial for me to ask for a moment of silence and screaming for Tracy Latimer? Every time her murderer, her father, comes up for parole, the newspapers take the opportunity to argue whether or not it was morally wrong for him to murder Tracy. People argue that he should be released, because it’s not like he’ll kill again. Disabled children don’t come along every day, after all.

I don’t know, I don’t know. It’s really hard for me to write about this. I don’t want to risk being told that the murder of women with disabilities is a special interest that shouldn’t be brought up at this memorial. But at the same time, I have no reason to believe that I would be told that (except that I’ve been told that in the past, about other memorials to violence against women, but not by this group). Is it appropriative to want to name our names, to remind everyone that violence against us is sometimes considered okay, because our lives are considered less worthy?

Katie-Lynn Baker was starved to death by her mother. Her murderer argued that she could tell Katie-Lynn, who had Rett Syndrome (a form of autism) and couldn’t speak, wanted to die, so she just stopped feeding the 10 year old girl. Her murderer was never even charged with a crime.

Chelsea Craig was fed a lethal dose of medication by her mother, who was found not criminally responsible due to mental illness. The accused claimed she murdered Chelsea because she didn’t want to leave Chelsea alone with her father.

The murderer of Charles-Antoine Blais drowned him in the tub because his autism was too much for her. After her year of community service, she became a spokesperson for an Autism foundation in Montreal. He was 6 years old.

We don’t talk about these names, these deaths, very often. Tracy’s comes up whenever her murderer is up for parole, but I had a hard time finding information about the other names, about Chelsea and Katie-Lynn and Charles-Antoine. We don’t seem to have a national memorial, a day to honour the children who are murdered for being disabled, the women who are raped for being institutionalized, the beating and torture of cripples done out of boredom. We don’t recite the names of our dead.

Should we? Should I incite controversy and recite the names today? Should I shout them during our moment of screaming, for myself if no one else? Should I approach the women who have worked so hard on this vigil and ask to be a part of it, so next year I can recite the names of every woman with disabilities murdered in Canada in the next 12 months?

Is silence ever the right answer?

Today we remember our dead, killed for being women and daring to attend Engineering School, and I recite these names, like a rosary, every year.

Geneviève Bergeron
Hélène Colgan
Nathalie Croteau
Barbara Daigneault
Anne-Marie Edward
Maud Haviernick
Maryse Laganière
Maryse Leclair
Anne-Marie Lemay
Sonia Pelletier
Michèle Richard
Annie St-Arneault
Annie Turcotte
Barbara Klucznik-Widajewicz

I hope you will all forgive me, but this has taken 2 1/2 hours to write, and I have no idea if I’ll be able to discuss it.

A brief PSA on language

20 November, 2009101, activism, justice, language, social attitudesableism, assholes, culture, essential concepts, feminism, fuck that, i thought you were supposed to be my ally, justice, language, privilege, privilege-check, problematic attitudes, shaming, social treatment, speak up, stereotypes, things people sayamandaw

So many people have complained that it is asking too much of abled people to stop using words they consider trivial: crazy, insane, lunatic, idiot, moron, dumb, blind, etc.

I beg to differ.

You know what is really damn easy? Erasing these words from your vocabulary. All you have to do is stop saying them.

You know what is really hard?

Confronting people on their use of same language.

We aren’t even asking you to do the hard work. We aren’t asking you to tell other people to stop using that language. We aren’t asking you to confront other people on their use of that language. We aren’t asking you to explain why it is problematic, to answer people’s questions, to deal with their redirection tactics, or to handle the attacks on and harassment of the people negatively affected by that language that such confrontations always seem to draw.

You don’t have to take the brunt of it. You don’t have to deal with the negative consequences. You don’t have to face employment discrimination, street harassment, caretaker abuse, and other people’s general cluelessness about our lives. You get to sit tight in your privilege, enjoying it without even realizing you’re doing it.

All you have to do is cut a few words out of your speaking and/or writing vocabulary. That’s it.

We’re the ones who are putting our safety on the line trying to change the cultural system that oppresses us.

Two seconds to reconsidering what you’re really trying to say? Easy.

Changing other people’s deep-seated attitudes? Really damn hard.

How do you think we feel when you complain that two seconds is just tooooo haaaaard for you to take on?

(Cross-posted at three rivers fog.)

Quoted: Paulo Freire

14 November, 2009activism, disability activism, justice, Quotationsabby jean

I find this quote helpful when I’m feeling worn down and need a little inspiration and motivation to keep fighting.

“Washing one’s hands of the conflict between the powerful and the powerless means to side with the powerful, not to be neutral. ”

– Paulo Freire, “Pedagogy of freedom: ethics, democracy, and civic courage” (1998).

The only way to not advance the agenda of the powerful is to fight it. (ht ohfortheloveofdog)

FWD/Forward

FWD (feminists with disabilities) for a way forward

Category Archives: activism

ACTION ITEM (United States): Ask your rep to co-sponsor the Technology Bill of Rights for the Blind

Quoted: Paulo Freire