Tag Archives: awareness

Recommended Reading for November 16, 2010

Peggy Orenstein for the New York Times Magazine: The code-words of breast cancer awareness

Fast-forward to today, when, especially during October, everything from toilet paper to buckets of fried chicken to the chin straps of N.F.L. players look as if they have been steeped in Pepto. If the goal was “awareness,” that has surely been met — largely, you could argue, because corporations recognized that with virtually no effort (and often minimal monetary contribution), going pink made them a lot of green.

But a funny thing happened on the way to destigmatization. The experience of actual women with cancer, women like Rollin, Black, Ford and Rockefeller — women like me — got lost. Rather than truly breaking silences, acceptable narratives of coping emerged, each tied up with a pretty pink bow.

Ally at Every Crooked Step Forward: Where I Write About (Not) Coming Out

I could have lied. But I couldn’t lie. I didn’t know asexual was anything, then, so I just said no, and then was forced to sit through all the speculation. They didn’t know, and I didn’t know enough to argue with them. People assumed I was undesirable, because of the CP, and I didn’t argue with them, though I wanted to because the assumption hurt, but the hurt was hard to explain, under the circumstances. People assumed I was too brain damaged to understand sex, and I couldn’t explain otherwise, because simply having no desire was enough to tell sexuals I didn’t understand.

Lisa at Sociological Images: Illustrating a “Normal” Life Course

By organizing birth control needs according to age, the slide show teaches viewers a socially-approved timeline for our sexual, marital, and reproductive lives.   Teen sex is invisible, having children in your 30s is ideal, and the end of a relationship is an option but, as Corina points out, not having children is not.

Wheelchair Dancer at cripwheels: Broken

Regardless of the state of Tommy’s mind and body, it is we who are broken.  It is we who drink in glorifications of war and heroism in the movies and kill the political systemic message of such poetry by treating it as individual expression.  It is we who refuse to provide support and systems of support to help our veterans; it is we who shame and silence them into a stiff upper lip.  We are the ones who both stare and look away.  Homelessness doesn’t respond to swelling music and huge parades.  PTSD isn’t best treated by ignoring it.

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: NAMI (National Alliance on Mental Illness)

Unlike Breast Cancer with their irascible pink color, and Heart Disease with their “wearing red” campaign, Mental Illness doesn’t have the awareness in the public eye that those campaigns and others such as Multiple Sclerosis or other equivalent organizations.  Why is that?

David Gorski at Science-Based Medicine: Homeopathy for fibromyalgia: The Huffington Post bombs again

As you might be able to guess, because fibromyalgia is a syndrome of unclear etiology with a wide variety of physical complaints, widely varying severity, and a clinical course that waxes and wanes, it is a woo magnet. Indeed, many conditions that scientists do not yet understand well and/or for which we do not yet have particularly good treatments are woo magnets.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for October 19, 2010

Corina Becker at No Stereotypes Here: Real Communication Shutdown

I was recently asked by a person on Twitter to participate, and I responded that there wasn’t much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating.

kaz at Kaz’s Scribblings (DW): trials and tribulations — learning foreign languages with speech disorders

in my forays into foreign languages, I have discovered that if I speak slowly and focus on pronunciation I automatically slip into stronger therapy. And I do mean automatically. And, like, I can’t even think “okay, I’m going to talk normally now”, I actually have to intentionally try and modify various sounds to be untherapylike. . .

Katherine Creag at My Fox NY: Woman Couldn’t Buy Inhaler During Asthma Attack

“I had exactly a twenty-dollar bill. It came to twenty-one and change,” Jack Brown said. “I offered him my cell phone, my wallet. I said I live right around the corner. I come in here all the time.”

He was told the inhaler with tax would cost just over $21. He was short a dollar and change.

staticnonsense at Some Assembly Required: Intersections of Disability and Transgenderism

Trans people get othered a lot. We’re pushed off as crazy, disordered, for challenging the social norms of gender and sex. Either by choice in trying to deconstruct this ancient structure, or simply by existing. Throughout history we’ve been institutionalized or “fixed” (or tried to be) simply for existing as ourselves in a world that focuses so strongly on the cissexist concept of penis = man = masculine and vagina = woman = feminine. Even now the disconnect of the body and one’s self identity is seen as a disorder, one that mu

Chally at Feministe: Unreality and the politics of experience

And it’s a bizarre experience because the person in the best position to speak about their own experiences and emotions is the person who has them. And, personally, I find the desire to go over horrible experiences with a fine tooth comb, tease them out, decide – retrospectively, calmly, objectively – on an appropriate response, (an appropriate reaction is whatever I judge to be appropriate, thank you very much) to add a whole new sickening layer to what I experienced. And then there are those demands for more details and irrelevant details and painful details, because whoever is “listening” thinks they get to decide what’s important.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for September 14, 2010

Astrid van Woerkom at Astrid’s Journal: “Exercise For Mental Health!”

Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.

Spilt Milk at Feministe: Fat acceptance: when kindness is activism

Body shame is a great tool of kyriarchy and we often get it from our mothers first, as we learn how bodies can be reduced to a collection of parts and how those parts can be ranked in order of acceptability. Thighs and bums, boobs and upper arms, back-fat and belly-rolls can all be prodded and critiqued, despaired over, disparaged, loathed. This is often a social activity, too. Who doesn’t love normalising misogyny over a cup of tea and a (low calorie) biscuit while the kids play in the next room?

Clarissa at Clarissa’s Blog: Asperger’s: Daily Experiences

As I mentioned earlier, I have “good days” and “bad days.” On bad days, it becomes more difficult to manage my autism, while on good days I make use of a variety of strategies that make it difficult for most people who know me to guess that I am in any way different. In this post, I will describe the techniques I use on my good days, of which today was one. I remind you that my form of Asperger’s is pretty severe, which means that not everybody who has it needs to go through a similar routine.

Cripchick at cripchick’s blog: the politics of mobility

there are so many times when i feel deep resentment for the mobility that (most) nondisabled people our age have. not physical mobility as in moving your arms, but the privilege of being able to move through the world so easily. never having to ask permission. never being dependent on access their support systems provide. never worrying about where they will stay, how they will get around, or who will hire them if they need cash.

Kim Webber at Croakey: How to boost the rural/remote health workforce? It’s not all about the dollars… [via tigtog at Hoyden About Town]

After a year-long consultative effort, the WHO document proposes 16 recommendations on how to improve the recruitment and retention of health workers in underserved areas.  You can see what they are at the bottom of this post (only one of the recommendations relates to financial incentives).

Finally, this week — September 13-19th —  is National Invisible Illness Awareness Week in the U.S. You can find out more by visiting the NIIAW website.

Recommended Reading for April 20, 2010

Scott Carney (Mother Jones magazine): Inside India’s Rent-a-Womb Business

Despite the growth in services, surrogacy is not officially regulated in India. There are no binding legal standards for treatment of surrogates, nor has any state or national authority been empowered to police the industry. While clinics have a financial incentive to ensure the health of the fetus, there’s nothing to prevent them from cutting costs by scrimping on surrogate pay and follow-up care, or to ensure they behave responsibly when something goes wrong.

Benedict Carey (New York Times): Seeking Emotional Clues Without Facial Cues

Ms. Bogart has Moebius syndrome, a rare congenital condition named for a 19th-century neurologist that causes facial paralysis. When the people she helped made a sad expression, she continued, “I wasn’t able to return it. I tried to do so with words and tone of voice, but it was no use. Stripped of the facial expression, the emotion just dies there, unshared. It just dies.”

Goldfish at Diary of a Goldfish: Blogging Against Disablism Day (BADD) Will be on May 1st, 2010

Blogging Against Disablism day will be on Saturday, 1st May. This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made. [Note: Click the link for info on how you can participate in BADD 2010!]

Max Harrold (Montreal Gazette): Filmmaker in wheelchair says red-carpet rejection inspired film

[Filmmaker Sean Marckos] has it all on video: He and a colleague, both in tuxedos and with their tickets in hand, being hustled out of the famous Palais des festivals in Cannes in 2008 and 2009. They were told they could enter only through a rear entrance, away from paparazzi. “They didn’t want me next to the beautiful people like Brad Pitt and Angelina Jolie,” said Marckos, 31, who has muscular dystrophy.

National Center For Lesbian Rights (NCLR): Greene vs. County of Sonoma et al.

One evening, Harold fell down the front steps of their home and was taken to the hospital. Based on their medical directives alone, Clay should have been consulted in Harold’s care from the first moment. Tragically, county and health care workers instead refused to allow Clay to see Harold in the hospital. The county then ultimately went one step further by isolating the couple from each other, placing the men in separate nursing homes.


“Bad Cripple”

Last month, I went to a non-partisan Campaign School, where women learned the nuts and bolts of running a winning campaign for political office in Canada. We all said a bit about ourselves, and I stood up and introduced myself as a Disability Rights Activist.

I spent the rest of the weekend being told how “Bad Cripples” are ruining the system for everyone else, and how every problem that I discussed, from how low disability-support payments were to how difficult it is to get around the city with a wheelchair, was caused by That Person.

You know That Person. The one Everyone Knows who doesn’t have a real disability. They could work – of course they could! – they’re just in it to scam the system. This One is bad because whatever he claims about his disability, it’s obviously exaggerated because no one could be in that much pain. That One is bad because she decided to move to another province where the disability support payments are better – obviously she’s just in it for the money.

Regardless of where someone fell in the political spectrum, they felt it very important that I knew that it wasn’t the government’s lack of support for people with disabilities and their families, it wasn’t the surplus of societal barriers, it wasn’t even their own individual fears of disability that caused any financial distress. It’s those Bad Cripples who scam the system and totally ruin it for the Good, Deserving Ones.

People tell me anecdotes about Their Friend (or a Friend of a Friend) who totally confessed to scamming the system, or they tell me about how Their Friend isn’t really disabled, and they can tell, because of X, Y, or Z.

I’m going to confess something to you: According to the way a lot of people define “Bad Cripples”, Don and I are really Bad Cripples.

I’ll start out with the comments. Both of us have very bleak senses of humour, and both of us (me especially) say some of the most awful things. These include things like “I just married him for the disability cheques,” “Damn it, I should have lied and told everyone your Cancer spread so I could get extra time to finish my assignments,” “Oh, Don fakes not being able to talk very loudly so he doesn’t have to deal with the Student Loan people”, and even “Oh, the wheelchair’s just for show.”

You might be thinking “That’s obviously you joking around, Anna! No one really thinks you’re serious.”

Yes, yes they do. All the time. I’ve been talked to by professors about my joking comments about Don’s Cancer, and asked not to make them in front of other students. I’ve gotten really angry @replies on twitter about some of them. I have an email I can’t quite get myself to delete that’s all about how I’m a horrible wife who’s just using Don for his money.

I have no doubt that people have said, either to you or someone you know, something that sounds like they’re just gaming the system, including a breezy “Oh, I’m just gaming the system.” But you have no idea if they’re serious or not, or what their circumstances are, or how much pressure they’re under, internally or externally, to “pass for normal”.

The second reason people think of “fakers” is the “I know stories of people who don’t have real disabilities and they get all this financial support!”

Here’s the thing: I don’t have an obligation to tell you what my ability status is.

My ability status is between me and my doctor. I have made the choice to share it with a few friends, and my husband. I don’t have to tell you. I don’t have to tell my teachers. I don’t have to tell the pharmacist, the person who’s demanding I justify my tax-status, or my landlord. I have not discussed it with Student Accessibility Services on campus. I have not disclosed to the people on any of the committee meetings I’m on. I didn’t tell anyone at Campaign School.

Because it is none of their business.

I do not owe it to you, or anyone else, to explain why we’re raking in those big disability cheques.

I also want you to consider that you don’t always know what disability will look like.

You can’t tell by looking at my friend with the mental health condition that she tried to climb out a third floor window and jump because she couldn’t take the idea of another day at her job, but you can probably tell she isn’t working right now while she recovers from the experience. You can’t tell by looking at my friend that she was bullied so badly at work that she has panic attacks whenever she thinks of stepping foot in the neighbourhood of her former workplace. Until Don got his cane, and then his wheelchair, lots of people wanted to know why he wasn’t working – aren’t people who have mobility issues always in wheelchairs?

I know people who tell me “Bad Cripple” stories are trying to be helpful. They want me to know that they understand how difficult it is, and that if it weren’t for all those Bad, Faking Cripples out there, Don and I wouldn’t be living entirely off the largess of his family and my scholarship money. (The government expects that I should take out student loans to pay for Don’s medication that he needs to live. Oh goody – overwhelming debt in exchange for a husband who lives! Thanks, Nova Scotia! You continue to be awesome. Yes, the big disability cheques comment was a joke.) What I think they don’t want to do is question why it is so difficult. Bad Cripple stories give us someone – a conveniently faceless group that Doesn’t Include Us – to blame.

I think a lot of people are going to rush to tell me stories about how this all may be true, but they totally know of this person who is totally lying about being disabled. Please consider whether or not that anecdote will contribute to a conversation, or just remind people with disabilities that they’re viewed with suspicion and have to prove their status to you.

Guest Post: Disability Dismissed

Este Yarmosh has Cerebral Palsy. She holds a B.A. in English from Eastern Connecticut State University and is currently studying for her Master of Arts degree in English at Simmons College.

I have what is, I believe, widely considered a “visible disability”: Cerebral Palsy. Yet it is of so slight a degree that most (able-bodied) people probably don’t notice it. So, this slightness in a way makes my Cerebral Palsy an invisible disability (which it really isn’t—I do not mean to offend those with invisible disabilities). The tension between the visible/invisible aspects of my disability causes me to reside in a sort of twilight world which constantly shifts between my ability to “pass” as “normal” and the very real experience of my disability. Granted, I walk with a limp and my left hand curves to the left because of my tight muscles, so my “passing” is really an illusion.

For instance, when my able-bodied step-father talks to me sometimes, he implies that he subscribes to such stereotypes as “overcoming your disability” – which is damaging because I can only adapt to my environment and circumstances, since my disability will be with me for the rest of my life. I say this last part without self-pity, which, it is said, is the refuge of the weak. Then I suppose I have a right to it; I say that sarcastically. There is a reason why my step-father would be so clueless in his dealings with me: he raised two boys, both of whom are able-bodied (let us be thankful for that! Ugh).

When I talk to my step-father about how my disability impacts my life, occasionally he will say that I’m using my CP as “a crutch.” A “crutch”? That is outrageous; I was upset by his comment, though I didn’t tell him so. He has tried to convince me to feel guilty about “using my Cerebral Palsy as a crutch.” I simply reject the invitation to feel guilty about an impairment that I was born with. I am just not equipped to see with able-bodied eyes, so to speak. I have known nothing else but my disability; I am stating a fact here. What my step-father is implying by saying that my disability is a “crutch” is that I am too dependent on my impairment and that I complain too much about it. Now, I don’t think about my CP every minute of every day and it’s not too big a problem for me much of the time. However, my CP is also real and is a legitimate issue for me. To say that it’s not would be lying to myself and to other people. And I think I have a right to complain every once in a while about certain things related to my disability, whether they are physical or social aspects. For example, sometimes it is very difficult for me to walk after I’ve been sitting for a period of time because my muscles have minds their own and thus stiffen up, as my Cerebral Palsy is of the spastic type. I think I should have the option of complaining about the fact that I can’t walk! I have cited the above personal example to illustrate how ignorant and clueless most able-bodied people truly are when it comes to dealing with people with disabilities, even if they think they mean well by saying the things they do.

I would like to compare the scenario of telling (or implying) a person with a disability that they’re not disabled with an incident from the life of Frantz Fanon, the great Marxist literary critic. To paraphrase, he was giving a lecture in France and a Frenchman, who was impressed, said, “at bottom, you are a white man” (Lodge 137).

Now, Fanon was of Afro-Caribbean descent. The Frenchman was changing, and thus, denying Fanon’s nature with his comment, whether he knew it consciously or not. Fanon’s incident illuminates white people’s ignorance not only of Afro-Caribbean culture and humanity, but it shows how people in general are ignorant of other people’s feelings as well. The Frenchman’s comment was really a back-handed compliment, which is ultimately insulting and hurtful. Once again, the Frenchman’s remark to Fanon is analogous to someone saying to a person who has a disability, “you’re not really disabled because you don’t look like it and because you are very skilled at what you do.” This denies the person with a disability’s basic nature and humanity, while the ignorant person who makes the comment thinks he/she is complimenting them and telling them what they want to hear (not always the case).

I feel like able-bodied people do not take me seriously when I tell them I have a disability – it is at the point where it seems like they don’t believe me. There may be some evidence for this, though, since I use inserts now as opposed to a higher-than-my-shoe brace I wore as a child. Because to prove to the able-bodied that you are disabled you need concrete evidence of it, which has to be seen! Again, I say that sarcastically. I feel like I’m lying to able-bodied people; this is ironic, since of course I have Cerebral Palsy. Here is an example of an able-bodied person not taking my disability seriously: back when I was in college, my roommate and I had an argument and I tried to level with her by telling her something personal about me. I showed her my leg brace which I used to wear when I was younger. She looked at it briefly and said, “Oh, I hurt my knee too,” and she walked away. The point is she completely misunderstood my situation, taking it (relatively) lightly and believing that I had an injury, the implication being it would heal in a matter of weeks. The truth is, on the other hand, I have an impairment which is life-long and which often gives me searing pain (I’m not pretending that, able-bodied people!).

It feels, for me at least, easier to “pass” on a daily basis. How dare women with disabilities offend the delicate sensibilities of able-bodied people by reminding them that not merely do we exist but that we have our own types of power and strength! Yet there are times when I sort of feel guilty “passing”, as though I’m denying a critical part of myself by keeping up this practice. Yet, it is my opinion that there is a barrier of silence separating me from the able-bodied people I attempt to notify of my disability. The barrier is built by them. We know that; it is nothing new. Yet that is why the social model of disability must continue to be written on and discussed, since it impacts our lives in such a major way. We can keep using the social model as a tool to scrutinize and critique the manner in which the able-bodied interact with us.

Source:

Lodge, David and Wood, Nigel. Modern Criticism and Theory: A Reader. Pearson Longman, New York: 2008. 846 pp.