Yearly Archives: 2010

I’m not here for your inspiration

anna rants, autonomy, bodies, media and pop culture, othering, social attitudes, , , , , , , , , ,

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.

Recommended Reading for February 25th

recommended reading

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Andrea Fay Friedman

NYT Arts Beat: ‘Family Guy’ Voice Actor Says Palin ‘Does Not Have a Sense of Humor’

Image: Andrea Fay Friedman, who has Down syndrome, was a voice actor in a recent episode of “Family Guy” criticized by Sarah Palin.

One person who supports the “Family Guy” staff is Andrea Fay Friedman, the 39-year-old actor and public speaker who played Ellen in that episode. Like the character, Ms. Friedman also has Down syndrome.

In an e-mail message sent on Thursday to The New York Times, Ms. Friedman wrote:

” I guess former Governor Palin does not have a sense of humor. I thought the line “I am the daughter of the former governor of Alaska” was very funny. I think the word is “sarcasm.””

ninjanurse at Kmareka.com: Talking Back to Sarah Palin

You may agree with her or not, but it’s good to remember that people with Down Syndrome are not God’s innocent angels sent here to teach us something about life, but actual people who have their own lives to live. Trig Palin will grow up, and I hope he will have a good life. Sarah Palin better hope she doesn’t pick up the NYT some day and see a best-seller called, ‘Drafted–My Life on the Campaign Trail When Mommy Went Rogue’, or ‘Going Rough–Missed Naps and Noisy Crowds in Days that Made History’. At least it’s not ‘Vice-President, Dearest’ –not yet.

Ally G. at The disABILITY Enlightenment Project: disABILITY Simulations

I know I came out of that exercise feeling frustrated and discombobulated. Also oftentimes people will come out of those simulation activities thinking to themselves “gosh, I’m glad I am not stuck in a wheelchair all day” or “I feel sorry for people who are blind.”

Feelings of pity or “glad that’s not me…” are not the aim of disability rights advocates.

Marie Claire/Yahoo!7: The Battle for Care that’s Pulling Families Apart

When news broke that Australia’s only boarding school for disabled kids was set to close, it exposed once more the heartbreaking lack of support for their families. […]

The issue made headlines last November, when reports surfaced that Kingsdene Special School in NSW – the only weekday boarding school for sev-erely disabled children in Australia – may close due to the charity Anglicare having to withdraw financial support. Parents expressed their fear that if the school shuts, they may have to make the same heart-rending decision as Anita to abandon their child to DoCS.

New York Times: Countless Lost Limbs Alter Life in Haiti’s Ruins

More than a month after the earthquake, thousands of new amputees are facing the stark reality of living with disabilities in a shattered country whose terrain and culture have never been hospitable to the disabled.

Some remain in hospital tents swarming with flies; others have moved to makeshift post-surgical centers; and those who healed quickly, like Ms. Jean, have been discharged to the streets, where they now live. All need continuing care in a nation with no rehabilitation hospital, few physical therapists, no central prosthesis factory since the quake and a skeletal supply of crutches, canes and wheelchairs gradually being reinforced by donations.

“The situation for newly disabled persons is very delicate,” said Michel Péan, Haiti’s secretary of state for the integration of the disabled. “They urgently need not only medical care but food and a place to live. Also, we cannot forget those disabled before the disaster who, because of their handicap, are having trouble getting access to humanitarian aid.

Ewa Hess, Hennric Jokeit at Eurozine: Neurocapitalism [Perhaps we need a new warning category for “obfuscation”… ~L.]

It may seem uncanny just how closely the narrow path to scientific supremacy over the brain runs to the broad highway along which capitalism has been speeding for over 150 years. The relationship remains dynamic, yet what links capitalism with neuroscience is not so much strict regulation as a complex syndrome of systemic flaws.

Shame and Blame with African-Americans and Mental Health: Let the Circle Be Unbroken

blaming, class issues, intersectionality, justice, mental health, race

Recently, U.S. Surgeon General Dr. Regina Benjamin kicked off a national campaign to tackle mental health in the African-American community. Benjamin explained why a focus on African-Americans is needed: “Mental health problems are particularly widespread in the African-American community. In 2004, nearly 12 percent of African Americans ages 18-25 reported serious psychological distress in the past year. Overall, only one-third of Americans with a mental illness or a mental health problem receive care and the percentage of African Americans receiving services (nearly 7 percent) is half that of non-Hispanic whites.”

Programs focusing on addressing underrepresentation of minority groups in mental health care tend to focus on outreach to and education of the underrepresented group (while this post focuses on historical and structural barriers to African-American participation in the mental health system, these larger concepts are likely applicable to other racial and cultural minorities throughout the world.). The theory seems to be that if individuals knew that they might be experiencing mental health systems and understood how the mental health system could treat and benefit them, they’d start accessing it in droves. This kind of outreach and education is clearly an important part of increasing minority representation in mental health care, but the exclusive focus implies that the primary barriers are the attitudes of individuals who would change their minds if they just had more information. This ignores a lot of problems and lets a lot of bad actors off the hook for institutional barriers and exclusions. In the particular instance of African-American engagement in the mental health system, it is these long-standing oppressions and exclusions which are perhaps most to blame.

A primary issue is that African-Americans are more likely to be subject to a number of forces of oppression and discrimination which can increase trauma and vulnerability to mental health disorders. “Owing to a long history of oppression and the cumulative impact of economic hardship, African Americans are significantly overrepresented in the most vulnerable segments of the population. More African Americans than whites or members of other racial and ethnic minority groups are homeless, incarcerated, or are children in foster care or otherwise supervised by the child welfare system. Proportionally, 3.5 times as many African Americans as white Americans are homeless. African Americans are especially likely to be exposed to violence-related trauma, as were the large number of African American soldiers assigned to war zones in Vietnam. Exposure to trauma leads to increased vulnerability to mental disorders.”

To me, that does not suggest that the primary solution is increasing African-American representation in mental health treatment – it suggests that a primary solution would be to address the structural inequalities that are making African-Americans “significantly overrepresented in the most vulnerable segments of the population.” Maybe a program that focuses on homelessness in the African-American population. Maybe addressing the sentencing disparities for crimes involving cocaine and crack cocaine, and how that contributes to disproportionate and longer incarceration of African-Americans. Or how felony disenfranchisement prevents a staggering number of African-Americans (13% of black adult males!) from participating in our democratic political system. Without addressing these ongoing problems, a disproportionate number of African-Americans will continue to experience trauma and increased vulnerability to mental disorders.

A second and key issue is the long history of how the psychiatric profession has treated African-Americans in the United States. Diagnoses and treatments for African-Americans have long been rooted in the structural racism of slavery, with early diagnoses of “Negritude” and “Drapetomia” for slaves who fled their masters and recommended treatment of whipping as therapeutic intervention. In 1895, a Georgia psychiatrist popularized the idea that “structured lives led by slaves served as protective factors against insanity” and that slavery protected African-Americans from freedom that would literally make them insane. In the late 1800s and early 1900s, there were separate “colored” institutions for African-Americans, who received little if any treatment services and were subject to horrific tortures and sexual assaults.

A glance at the current mental health system makes it clear those historical problems have not been eradicated. African-Americans are much more likely to be diagnosed with schizophrenia than with affective (mood) disorders, even when displaying the exact symptoms of a white patient diagnosed with affective disorder. This is true even when the diagnosing clinicians included African-Americans well trained about the bias towards schizophrenia diagnoses. Studies suggest this is because clinicians apply entirely separate decision models when diagnosing African-American patients, likely drawing on stereotypes of paranoia and violence that aren’t actually associated either with African-Americans or people with schizophrenia.

There are also significant knowledge gaps in how psychoactive medications affect African-Americans. There is almost no research on ensuring adequate racial representation in psychopharmalogical research, nor on how to ensure that participating patients from various cultural and racial groups give informed consent. This lack of knowledge is affecting the effectiveness of treatment, as existing research shows that “a greater percentage of African Americans than whites metabolize some antidepressants and antipsychotic medications slowly and might be more sensitive than whites,” and can lead to faster responses and more severe side effects when African-Americans are treated with doses commonly used for whites. Despite this, clinicians in psychiatric emergency services commonly administer “both more and higher doses of oral and injectable antipsychotic medications to African Americans than to whites.”

To me, all of this suggests that the psychiatric profession hasn’t really figured out how to provide psychiatric treatment and care of the African-American population with the African-American individual’s best interests in mind. History speaks to using psychiatry to control, torture, sedate, and oppress African-Americans, even creating fictionalized diagnoses to help support the structures of slavery. Add to all of this the multiple barriers preventing access to mental health care even for those who enthusiastically wish to access it – lack of parity for mental health care, lack of health care coverage at all, societal sigma around mental health – and instead of wondering why there’s underrepresentation of African-Americans in the mental health system, I start wondering why there’s as many as there are.

Clearly, a solution focused only on outreach and education to individual African-Americans is doomed to be unsuccessful, because it overlooks the underlying structural issues making African-Americans particularly vulnerable to mental health problems and the historical reality of their exploitation by the mental health system. Even more troubling, though, is that when the access problem is framed as an issue of education to an individual, it allows the blame to be placed squarely on that individual – even if these other, more serious, structural barriers are ignored. That kind of blame is just another addition to the complex system of forces making African-Americans more vulnerable to mental disorders to begin with.

Recommended Reading for February 24th

recommended reading

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Mark Bekir in a First Flight Crew T-shirt

Image: Marky Mark (Mark Bekir) in a black First Flight Crew T-shirt.

accessibleARTS: First Flight Crew breaking into the scene:

The eight piece hip hop crew from all over Sydney is managed by Accessible Arts’ Creative Programs Coordinator, Alison Richardson and was formed in 2009 as a result of a series of workshops with Victorian based music organisation Club Wild, further development with Powerhouse Youth Theatre and all under the guidance of hip hop artist, Morganics.

Wheelchair Dancer: Passing By:

At the studio where I take classes when I am in NYC, the elevator isn’t ADA accessible: it’s painfully small. So small that there is always a line, well, a press of people waiting to go upstairs. It continues to amaze me that hyperable-bodied dancers who are about to go and dance for hours on end take the elevator. But they do, and so, when I was using my previous (wider) chair, I had to get there even earlier than the rest; I had to stand up, dismantle my chair, limp in, hold the door, drag the pieces in behind me and then reassemble the thing. It’s the sort of disability performance I didn’t want people to see.

staticnonsense: at I Am Not: A Punishment:

I am not a punishment to be bestowed upon anyone, much less my caring and supporting family. I know your beliefs strongly state otherwise, but they do not represent the reality of the situation.

My mother’s medical decisions and past choices are hers. They are not anyone else’s business. It is not our place to judge her for her decisions, especially when one does not know or one doesn’t need to know the reason why. No matter her decisions in the past, she is an infinitely caring person that has been behind me every step of the way through the trials and tribulations of my life.

IP at Modus Dopens: Why separate resources ain’t good enough:

There’s a pervasive myth that annoys the hell out of me, and I hope you’ll excuse me while I get it out of my system: it’s the idea that it’s ok for an institution to put in new inaccessible facilities as long as it also has some accessible ones elsewhere.

Really, no.

Why why why do we have to have one set of facilities for the “normals” and another set for the “freak show”? It’s humiliating, and it’s not even useful. If you’re putting in a facility from scratch, it’s often the case that you can put in something accessible for the same cost as something inaccessible. So it’s not even easier to put in two sets of facilities rather than just the one. This is just another way that we center the experiences of currently non-disabled people

PS News: Red tape cut enables disabled veterans:

Ex-Service personnel with disabilities who access income support are to be spared medical reviews at Centrelink for their Disability Support Pensions. […] Mr Griffin said TPI pensioners currently had to endure repeated Job Capacity Assessments to keep their Disability Support Pensions.
He said these assessments were “unnecessary”, as the veterans had already been through a rigorous assessment process to access DVA benefits.

Brisbane Times: When the ability to act is what counts :

Actors with a disability playing characters with a disability have been particularly prominent in Australian films this year, including Matthew Saville’s feature Noise and Clubland, which stars Brenda Blethyn. […]

Rick Randall, director of The Other Film Festival, Melbourne’s trail-blazing festival of “New cinema by, with and about people with a disability”, says roles remain few and far between in Australia. “There are a few films with minor roles played by people with disabilities, but there’s still a long way to go. The major problem, though, is that we’ve got a shrinking film industry so it’s really hard for new players to get a foothold.”

Young agrees, adding that it’s vital that disabled people are making the work as well as starring in other people’s. “When we write about our own experience, we bring something to it that non-disabled people rarely manage to capture,” she says.

New York Times: Doing an About-Face on ‘Overmedicated’ Children :

[Judith Warner] sallied forth to interview all the pushy parents, irresponsible doctors and overmedicated children she could find — and lo, she could barely find any. After several years of dead ends, missed deadlines and worried soul-searching, she was forced to reconsider her premise and start all over again.

“We’ve Got Issues” is the product of that unusual cycle. Journalists who cobble together enough anecdotes to support a preset agenda are all too common, and presumably Ms. Warner could have managed to do just that. Instead, she actually let her research guide her thoughts.

Trust Me

i'm right here, medical practice, reproductive justice, , , , ,

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A couple of weeks ago I asked my PCM for a referral to OB/GYN to replace the IUD that I had to surrender over the summer. She and The Guy and I have been talking for some time about the options and realities of having another child with my condition, and the answer we came up with is that we will wait for a little longer and see if I am still doing well with my current regimen.

Usually these things take weeks to schedule, but they called the next day, and I had my referral appointment on the second day. No matter what your history in the OB/GYN clinics you have to have counseling in order to get birth control through the MTF (all the ones in which I have been treated anyway), and the idea is that you get to talk to your OB/GYN about all of your birth control options, what you want from your birth control, take his or her advice, and decide on what is best for you. That is the theory, anyhow.

Some people (like me) have an idea ahead of time what they want or what is best for them. I, for example, due to my medical history and ongoing condition, am not able to use a hormonal birth control. Because of that I know that the copper IUD (ParaGuard) is the best option for me. Also because of this, I often read up on ParaGuard and IUD use in women, and try to keep abreast of any information regarding IUD usage, risks involved, etc. The IUD has such a bad reputation from so much misinformation that I feel the need to stay on top of this. Some would say this makes me a big smarty-pants-know-it-all. I say that sometimes a woman can’t trust that her doctor is going to take her word at face falue, and in the off chance that her doctor isn’t as awesome as mine she needs to be prepared. I am privileged to have information available at my fingertips.

I did not realize that my appointment would not be with my usual kick-ass OB/GYN, Dr. K, the same one who saved my fallopian tubes and life this summer and who promised to give me a shiny new IUD whenever I was ready for it. Not panicking when I saw the face of a woman I didn’t know I sat down as she introduced herself as Nurse Midwife V and told me that she had been looking over my file. Great. Maybe she was doing her background reading too, because I really tire of bringing every doctor up to speed constantly on my condition when it is right there on the computer screen for them to see. I don’t have a bunch of degrees and I can keep up with the required reading.

Before I had even the chance to say anything she told me that I was “not a candidate for an IUD” because of my ectopic pregnancy, and that she was not going to refer me for one. When I started to say that I understood that there were some risks she cut me off and told me that my pap was also past due and kept talking. I tried to assert myself past her obsession with people rooting around in my vagina, to let her know that I was aware that there were risks involved with the IUD, but that I knew that not only was what happened to me rare, but that I knew it was rare that it might happen again. But she wasn’t having any of that. She kept right on talking like I wasn’t even there.

I told her that my regular doctor had already said I was fine to have one. She responded by saying that it usually took weeks to get in to see him, as if this was supposed to deter me somehow. I also tried asking if the new ACOG regulations had been implemented yet, thinking this might distract her and get me closer to my goal (also, I am in the lag area none of them know what to do with, being 29, soon to be 30) and all she would say was that my pap was past due. Is it? I don’t know. I had a normal one in late 2008. I am in a mutually monogamous relationship…

When I left I told the front desk that I would no longer allow Nurse Midwife V to treat me. I am currently in the process of filing a formal complaint against her. What shouldn’t have happened here was having everyone from the desk staff to the NCOIC (that’s Non-commissioned officer in charge) tell me how nice Nurse Midwife V is and how everyone likes her so much, and that she is well known for being very good at what she does. That might well be true, great. My experience is that she was condescending and rude, and didn’t help me with my medical needs to my satisfaction. I think that people forget that sometimes, that doctors and nurses are also here to provide a service for us. I have a medical need, and she didn’t meet it. I shouldn’t have to settle for that. No matter how nice and great she is to work with. I also shouldn’t have my experience erased and dismissed by everyone in place to help me when things go wrong for me. That is not good patient advocacy.

I am rather privileged, however, in that I was able to make another appointment, and I saw Dr. K the next day. Had I been someone who had to drive a long way to a clinic, I might not have been able to. Had I had to pay out of pocket for this visit, or if my insurance limited the amount of OB/GYN visits or birth control counselings I was allowed per year, I would not have been able to. Had the travel cost me money I did not have, this would not have been possible. Had I not had the type of job I do where I set my own hours, I might have had to miss work. These are the kinds of things that women face when they come up against providers like Nurse Midwife V, providers who don’t want to listen to women, who won’t talk to women about their own bodies and medical histories. Providers who don’t trust women to be actively involved in their medical processes. Providers who can’t be bothered to involved women in the partnership that should be their own medical care, especially when it comes to their reproductive health. As it was, having to go back a second time was already taxing on my spoons, and stressful, because now I have be on my game. Suddenly I have to come in educated on something that my provider should have known the first time.

Thanks to meloukhia’s indominatable Google-fu I took in the information I was looking for, backing up what I had already said, that an ectopic pregnancy did not preclude me from having an IUD (or, that a previous ectopic pregnancy was not a contraindication for an IUD). Dr. K was impressed that I was so prepared. He told me that he had heard that information, but he himself had been so busy that he hadn’t had time to read any of the journals for himself. He told The Guy (who went with me this time, because they like to banter back and forth in Korean) that I should come in from time to time to keep him updated on current women’s health, and said he wished more people came to him so informed. He said that whomever told me that I couldn’t have an IUD was wrong. I was prepared, but I shouldn’t have had to come in as if I was fighting a war.

Two weeks later I have my IUD.

Nurse Midwife V didn’t care to ask why, after having one IUD failure (as rare as they are, b/c they are pretty much the most effective form of reversible birth control out there, with a fail rate of less than one percent), I would want another IUD. She didn’t bother to find out anything else in my medical history that might affect my decision to make that very personal choice about birth control, like that I am on medication that might have contraindications with hormonal birth control, or that previous specialists had determined that hormonal birth control is a migraine trigger for me. She simply asserted her own opinion (as wrong as it turned out to be) and called it a day. But all of that information is in my medical record if she cared to look. The same record she said she reviewed when she made her initial judgment.

And now, I can’t trust her.

Originally posted at random babble…

Parking spaces – Daily Mail Fail

accessibility, , , , , , , ,

The Daily Fail has a little maths problem. OK, they have a little everything problem, but in this particular case, well, you be the judge: Revealed: Why all those disabled bays stay empty

Hundreds of thousands of prime parking spaces in shopping centres are unused because of a legal obligation to provide four times as many disabled bays than are actually needed.

Supermarkets, shopping centres and leisure centres must allocate up to 6 per cent of their parking bays for disabled badge holders – even though just 1.4 per cent of the population is registered disabled*. […]

Campaigners are furious at the number of vacant disabled bays and believe more should be done to tilt the balance in favour of drivers with young children.

OK, so let’s do the math. On a small scale, anyhow. My family is 33.3% disabled. When we go out together, we need accessible parking 100% of the time. Oh, and we’re one of those mythical families, Daily Mail writers, that includes both a PWD and a young child. I know you think we don’t exist. But we’re right here.

Extrapolate up through the population, and suddenly those 6% figures (which only apply to small lots in the UK – large lots only need 4%) don’t look so excessive, do they?

Here’s another thing: When nondisabled people can’t find a space close by, they park further away and walk. When a disabled person can’t find an accessible space, she turns around and goes home. If the math doesn’t convince you, the social justice should.

In Australia? Only 1-2% – ONE to TWO PERCENT – of spaces are required to be accessible. 4% of Australians require accessible parking (do the math – this means that more than 4% of vehicles may contain a PWD who needs the accessibility), and that number is rising. AFDO recommends that a ratio of 10% may be more appropriate.

Many small businesses, including medical clinics, have no accessible parking at all. Many designated marked spaces do not meet standards and may not be accessible for all PWD – not wide enough, heavily sloping, blocked or non-existent access lanes and kerb cuts, further away from entrances than the “non-accessible” spots (I’m looking at you, IKEA), and so on.

“Cracking down” on parking permit abuse makes currently-nondisabled folks feel righteous, but it doesn’t do the job. We need more spaces, and we need compliant spaces.

*I’m assuming the 1.4% applies to those with blue badges in the UK, since around 20% of the population actually has a disability.

Recommended Reading for February 23rd

recommended reading

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

fearnleyCowra Guardian: Fearnley nominated for world sports award:

Former Charles Sturt University student Kurt Fearnley has again been recognised as one of the world’s greatest athletes by being nominated for a prestigious Laureus World Sports Award. […] Fearnley received his first nomination for the Laureus World Sportsperson of the Year with a Disability Award in 2007 but was beaten for the title by German skier Martin Braxenthaler. This year Fearnley will be joined by the captain of the Australian men’s Wheelchair Basketball team Justin Eveson in the race for the title.

frolicnaked at RH Reality Check: Endometriosis and “Why Don’t You Just…?”

Today, a close friend asked me how I was feeling, to which I said, “It’s bad enough to need the Percocet today.” I suppose her response shouldn’t have shocked me, but it did. “How can you work when you’re on those drugs?”

From there, I made the mistake of: a) continuing the conversation, and b) saying what I actually thought. “Isn’t the better question, ‘How do you work with debilitating pain?'” Because while I lament that I’m not necessarily more functional on narcotics than in 10+ pain, I know damn well that I’m not less. And you know, a lot of people I know don’t seem to register that, but they’re quite happy to share their opinions about what they think I shouldn’t be doing.

Brie at Feminists with Female Sexual Dysfunction: Guest Post – On the social construction of sex

There have been small steps taken to change the assumption that all women have the same sex life. But they are small steps. Whenever I talk to a friend about my sex-life or lack-there-of they are confused and don’t really understand. We have short 20 minute specials in the middle of the day, or on newscasts that only a select few are made aware of. Half of the specials that I have seen in the last few months I only knew about because the National Vulvodynia Association emailed me about them. And any attempt by network shows to highlight these problems, while appreciated, never quite get it right. ABC has tried, on a few occasions, to show women dealing with sexual dysfunction but the diagnosis and treatment happen so quickly it paints a false picture of the realities of the condition. We can’t expect miracles overnight I guess.

Philosopher Crip: Crip Conversations: When Activism and Scholarship Converge:

The following is an interview I conducted with my good friend, Bethany, who recently launched the blog CripConfessions.com.[…]

Bethany: CripConfeesions fits into my overall work because I am devoted to raising awareness and creating social change for disabled people. Through blog posting, I hope to add to my other work by providing a personal glimpse into my nuanced reality. I want more people to understand that disability is not a personal tragedy, but is an artful way of being. Of course, as a sexologist, I also want people to see disabled people as desirable and viable sexual/love partners so I hope some of my posts make some people realize how deliciously sexy disabled people are. CripConfessions then is just one part of the overall revolution of consciousness I seek to be a part of.

Miss Banshee: Defining Disability:

So why do I feel shame at saying I get that government check every month?

I guess it all has to do with how you see, or don’t see, disability. You can’t see my sickness. I can walk, and talk, and smile, and PRETEND everything is fine, and I do. You never SEE that I have a chronic illness. It’s all safely tucked away in my head, and I’ve spent the vast majority of my life seeing that it stays there, away from the world, my filthy, dirty secret. That I have a chronic, lifelong mental illness.

The Age: Family fought immigration laws for daughter

Australian migration laws tried to keep out a budding gymnast who delivers meals for charity. Cailan Ford-Weinberg was four when her Down syndrome was determined to be too heavy a cost on the healthcare system for her family to move from Britain, an inquiry into the migration treatment of disability heard.

After a lengthy $5500 appeal, the 15-year-old now has a shot at representing Australia at the Special Olympics and is well recognised in her community of Upper Ferntree Gully for volunteering with Meals on Wheels. […]

Disability Discrimination Commissioner Graeme Innes said the laws were outmoded. ”They make crude guesses and the assumptions they make about people with disabilities are only negative,” he said.

The perfect trifecta. And by “perfect”, I mean…

intersectionality, social attitudes

Sometimes, I’m almost tempted to believe there’s a special, special place in hell for people like US Republican State Delegate Bob Marshall of Manassas who says:

Disabled children are God’s punishment to women who have aborted their first pregnancy.

Yes, I’ll play that again.

Disabled children are God’s punishment to women who have aborted their first pregnancy.

Whatever happened to the “gift from God” inspirational-crip rhetoric?

And he didn’t shut up there. There’s more.

The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children.

He and others at the meeting suggest that Planned Parenthood should be renamed “Planned Barrenhood” or “Klan Parenthood”.

I do believe we have a perfect trifecta of menacing misogyny, violent disability hate, and misappropriating the civil rights movement for your bigoted cause. With a side serve of colossal, irredeemable scientific ignorance. And fail sauce.

Come filk with us – “Special Treatment” for PWD

accessibility, othering, politics, race, social attitudes, , , , , , ,

Paul Kelly, if you’re not familiar with him, is a bloody marvellous Australian singer-songwriter. Some consider him the “poet laureate of Australian music”. He writes everything from fun-but-pointy ballads – Every Fucking City is one of my favourite anti-hero pieces – to political protest music.

You can read a little about him here at Debbie Kruger’s:

But there are songs that have specific intent – the ones for which he is known as “political commentator.” Songs such as “From Little Things Big Things Grow,” which he wrote with Kev Carmody about Aboriginal Land Rights, “Treaty” with Yothu Yindi on Land Rights and Reconciliation and “Little Kings,” from a more recent album Words and Music, about dissatisfaction with the Government. “Those songs are the exceptions,” Kelly concedes. “’Special Treatment’ is another one like that, a specific situation and write to it.”

Check out the song:

Lyrics are here. For those who can’t access the Youtube, it’s performed in a folky acoustic-guitar sort of way.

“Special Treatment” is a great example, in my opinion, of a piece of protest music written in first-person, using the point of view of members of a marginalised group of which the singer is not a member (I think, and please correct me if I’m wrong). Kelly is deeply respectful of the history, takes his subject seriously while introducing elements of dry humour, and has collaborated extensively with artists in the group in question. The piece targets authority sharply and with bite; its impact does not on stereotypes, mocking, fetishisation, or Othering of Aboriginal and Torres Strait Islander people.

I’m acutely aware that I run the risk of ‘splaining here, and I suspect that similar grievance-politics dynamics apply elsewhere in the world: but just to dip both toes in and take that risk for a moment: a common complaint among white middle-class Australians (WMCAs) is that Aboriginal and Torres Strait Islander people in Australia get “special treatment” from government. WMCAs complain when there are funded Aboriginal health services attempting to make tiny inroads into the appalling longevity statistics, the 20-year Gap, the rates of trachoma and hookworm and pneumonia and STDs and nutritional deficiencies. WMCAs complain when there are tutoring and bridging programs assisting Aboriginal people from remote areas to go to university, attempting to address the massive gulf between educational opportunities, entrenched discrimination, and difficulties of transitioning from remote areas to urban universities with a completely different cultural milieu.

WMCAs complain when Aboriginal people who are out of work are offered barely enough support to not starve their families; when there are programs to assist the Aboriginal prisoners who survive prison to transition back to the community; when mental health support programs are offered in an effort to reduce the 8x suicide rate among young Aboriginal people; when STD and contraception services are funded for young Aboriginal women who are raped at extraordinary rates; when funding for domestic violence and violence reduction programs are offered to women who live in fear. All this and more is dismissed as unfair “special treatment”.

In response to a post I wrote responding to a post by CarrieP at Big Fat Blog – in which Carrie wished that fat people were offered the same level of “special treatment” and respect that people with disabilities are – megpie wrote a touching filk to the tune of Kelly’s “Special Treatment”. (OK, verse three is the same – and applies pretty precisely to the situation of forcibly-institutionalised PWD.) Check it out (while listening to the Kelly original, if you can) – and add your own verses in comments.

I can’t enter my child’s classroom
Although the door’s right there
I’m stuck outside my child’s classroom
Blocked by a single stair

I get special treatment
Special treatment
Very special treatment

I’d like to work an eight hour day
In an office on main street
But they won’t offer me the same pay
Or add a ramp my chair needs

Say it’s “special treatment”
Special treatment
Very special treatment

Mother and father loved each other well
But together they could not stay
They were split up against their will
Until their dying day

They got special treatment
Special treatment
Very special treatment

Mama gave birth to a healthy child
A child she called her own
Strangers came and took away that child
To a stranger’s home

She got special treatment
Special treatment
Very special treatment

I’m not allowed to cry out loud
I’m not allowed to scream
I’m not allowed to show my rage
I’m not allowed to dream

After all, I get special treatment
Special treatment
Very special treatment

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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