Yearly Archives: 2009

You don’t have to be normal.

22 October, 2009bodies, identity, normalitybody image, disability, identity, normality, self-acceptanceamandaw

(Originally posted April 2008 in two parts at three rivers fog.)

this is new to me. this idea that i should love my body. not hate it.

it’s funny, because i was about to say “this isn’t a post about body image.” but it is, isn’t it?

let’s cut to the point. i’m not talking about beauty standards.

i’m talking about my body. this physical thing.

i need to stop hating that physical thing.

it works differently. it doesn’t work like your body.

but that doesn’t make it bad.

this is hard to grasp. i don’t like this idea.

but maybe it’s better that i respect my body, and how it functions, than malign it, and Other it, and see myself as working against it.

maybe i need to see my body as that physical thing that is trying to help me be everything i want to be.

maybe i need to understand that i just have to interact differently with my body to accomplish that.

and that is not bad. that doesn’t make me Less Than. that doesn’t even make me different — or it shouldn’t, anyway.

maybe the problem is that i have been so indoctrinated into this culture that i can’t even see myself as just being – it’s always how different i am from the “normal” “healthy” body.

you know what, dammit, my body is “healthy.” my body is damn well fucking “normal” for me. when i understand how to work with it? i live a pretty damn nice life.

but the culture i live in doesn’t allow for that view. the culture i live in says that my body is not only different, but different in a bad way, because it doesn’t let me live my life like a normal person does.

fuck that.

i have a lot to work on, here.

revelation: i wouldn’t have such a hard fucking time learning how to work with my body if my culture hadn’t taught me to expect to be The Norm. if my culture hadn’t taught me that if you look like you’re fully-abled, then you must be. if my culture hadn’t taught me that if it doesn’t show up in the bloodwork or the ultrasound then it doesn’t exist. if my culture hadn’t taught me that my pain is simply pathology. if my culture hadn’t taught me about welfare queens and “milking the system.” if my culture hadn’t taught me that disability is both scary and pathetic.

…maybe i just need to understand that this is how my body works and damn it all, there shouldn’t be anything wrong with that — the fact that there is anything “wrong” is a sign of a fucked up culture — not of a fucked up body.

***

…the person who believes ‘I will be real when I am normal’ will always be almost a person, but will never make it all the way.

Eugene Marcos (via, via)

We have been told all our lives that to be accepted, to be successful, to be a whole person, we have to be “normal.”

And so we strive to change ourselves such that we resemble normalcy.

But it is a rare bird that can adapt itself to living in the water — or fish that can adapt itself to fly.[1. I hesitated with this metaphor. I was afraid of the implications. The usual stuff, that pwd are of an entirely different species, that pwd are animals, that pwd are at base un-understandable and therefore nobody should even try. (”We are nearer still when we know we don’t have to understand somebody to know he is real.”) But at the same time, I don’t want to shy away from the implication that we are not all the same. That is what we are pushing to accept. Everyone approaches the world in hir own way, and that is ok, and we don’t all have to come from the same place to be able to travel together.]

Respect your body and your mind. They operate how they operate, and there is no need to change that, not for anyone’s sake. It is not a deficiency. It does not make you lesser. It is not deviancy. It is what you are, and it is good for you.

People on the outside will be uncomfortable with the implications of such a weird and different body (mind) being a good thing, because we have all been indoctrinated into the cult of dominance, where what dominates is Good and Right, and anything that is not the same is Bad and Wrong. It manifests itself in so many different ways even for the same differences. But that is the root of it.

To outsiders, the idea that what you are is definitionally good, because it is good for you, a different person, is disturbing. To outsiders, it says that then, what they are must be bad. And those who think that way will therefore reject you as a person, differences and all.

But there is a different way. There is a way built, fundamentally, on respect. On allowing one another to be what we are, and finding joy in what results. On knowing that when a person falters trying to live in this society, it should not be chalked up to the fact that they are different, but to the fact that society has failed to plan for anything but the dominant, and will then fail in trying to accommodate anything else.

It rests on, again, seeing a person and thinking not: burden, but: potential.

On seeing that person, and recognizing them as a person.

We should all be prepared to accommodate differences, even when it means a change or an extra effort. We should be prepared for this, because we expect as much already from those we are failing to accommodate. We already expect them to change their very being to be able to accommodate how we operate. So we should not protest when we are called upon to open our minds, to change how we think, to change what we do. After all, at least we are not being asked to change what we are.

Shifting the Responsibility for Disability in Uniform

22 October, 2009intersectionality, justice, military, Uncategorizedinvisible disability, justice, medical care, military, Veteran's Affairs, women in uniformOuyang Dan

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate. Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

Disability issues overlap many facets of life, and one of our goals here at FWD is to bring as many of those to light as possible. One voice I want to offer here is that of the disabled U.S. Veteran. Specifically in feminist circles I feel that the disabled veteran is a voice that is seldom heard, and while hir voice may be part of a very small percentage, sie is facing a unique set of challenges.

One of those challenges is getting a diagnosis and care in the first place. A person gives hir time and life to the military for one of a variety of reasons and find hirself trained for any number of jobs. Sie can travel the world, see exciting places, or be sent off to fight in wars. In the blink of an eye hir world is turned upside down. Suddenly life isn’t what it was before. Hir body/mind/soul are not what they once were, and coming to terms with that is no easy task. If sie is one of the ones who has survived combat injuries or someone who became sick or injured while doing hir job in a Stateside base, sie does what sie has been taught to do…sie makes a routine appointment at the local Military Treatment Facility (MTF) to see her Primary Care Manager (PCM).

Hir PCM might evaluate hir, refer hir out for tests with specialists, or set hir on a merry-go-round of treatments. When the ride stops sie may or may not have any answers, and there may or may not be a Medical Review Board pending to tell hir the terms of the future of hir career.

This is where things get interesting. By interesting, I mean kind of fucked up. One, any or all of those specialists might have diagnosed hir. Those doctors start treating hir accordingly, because while TRICARE (military medical insurance) has its flaws, it kicks a lot of arse, and sie gets the care sie needs, mentally and physically (until her PCM deploys, but that is another post altogether, just you wait!), all under the umbrella of hir diagnosis. But then the Medical Review comes up, and all of hir doctors have to write these recommendations, and suddenly things change in terms of hir care. In hir appointments hir doctors start getting vague about care plans, and start talking around the actual words for hir condition…sie might suddenly feel dismissed or as if hir questions are not being answered.

As we read earlier this year, it isn’t a coincidence that military doctors are getting dodgier than Sarah Palin in an interview. There seems to be pressure to not diagnose active duty personnel while active duty, and it isn’t just PTSD. This service member might have received treatment for months leading up to hir review board only to have hir diagnosis revoked for the board so that the military could discharge hir with a lower rating.

It’s not too hard to understand why this happens. The rating system breaks down a little like this:

A medical team of medical officers somewhere in Officer Land and look at your whole military medical record, and all these nifty letters written by the doctors who have seen you, along with some reports from your Chain of Command (CoC). Based on all of this information they determine whether or not to separate you from the military. They also give you a percentage rating of how disabled they think you are before discharging your from the military (there is also something called Permanent Limited Duty, which I can talk about sometime in another post). It goes 0%-100% (the percentage is ultimately the amount of money they give you and “how disabled” they think you are). Unless they give you at least a 10% rating you get nothing. There is a list somewhere of what constitutes what percentages, and the military’s is different from the VA’s and each branch seems to interpret it differently. Anything between 10 and 20% will grant you a one time award (I love that they use the word “award”, like somehow you have won a prize) based on your pay over the number of years you spent active duty (minus taxes, but including any bonuses you earned). Most medical review boards fall in this range. The magic number seems to be 30%, which gives you a monthly stipend based on the same numbers. This math works all the way up to 100%. After 80%, however, you receive what is called a Medical Retirement, which, regardless of how many years you have served, you retain your full benefits (insurance, commissary, exchange and medical) as if you had retired after 20 years of service. That, I think is the rub. It’s money.

When I had my review, it went a lot like that as well. I could have been Sgt. X (well, Petty Officer X) in the rheumatologist’s office w/ a tape recorder. The same guy who had written in my record that he was treating me for fibromyalgia had written in my medical review that there was no way to know for sure, that I could in fact have fibro, but that I could also have CFS, or PTSD, or just be really depressed, so there was no real answer. His best advice was for a medical discharge and a referral to the VA for follow up care. He also suddenly became angry because I didn’t want to be on Cymbalta, because I didn’t feel the need to be on another anti-depressant when ADs weren’t helping my pain (Lyrica wasn’t out yet, and Cymbalta was a new-ish treatment). When a doctor tells me “I guess you don’t want to get better”, without listening to my concerns I know I have lost a battle.

After my review board findings came back (10% if you are nosy), my doctors seemed to have a shift in my care. I was receiving less pain management care (well, less pharmaceutical) and the focus was more on mental health. My review board found that I was too depressed to continue with active duty service, oh, and Trichotillomania sounded weird, I guess, so they tossed that on there, even though no one gave a fuck about it before. Pretty much all of my care was to be managed through Mental Health (which, should be noted, is in no way a slam on mental health. In my case, it was not the treatment I needed, even though for some people it is what they need), which made my physical needs very difficult to acquire while I was still active duty. Yes, I was depressed, but I was depressed because I was in so much pain that I was having a hard time dealing with life and a child, and because no one was listening to me. I was not in pain because I was depressed. No one seemed to be interested in the sequence of events. Before my review board findings I had a PCM, a neurologist, a rheumatologist, a chiropractor, an internal specialist, and a pain management specialist all convinced that all signs point to fibromyalgia. Afterward you could have dropped a pin in room of crickets for the voices that came to my defense.

After my discharge I began the process of filing the VA claim. It is pretty much the exact same process, minus the stuff from the CoC. Oh, and it takes longer. Hmmm. I wonder why that is.

I firmly believe in my heart that military doctors (and doctors employed by the military) are being pressured to push us out the door and to let the VA sort us out because it is easier on the budget. The Armed Forces Committee seems content to thank soldiers by one-lining them out of the fiscal year’s planning, and it pisses me off. When I was given my board findings and told to sign off on it I was able to glance at the list of others who had been reviewed with my own. I remember seeing at least a dozen names with finding for PTSD or other things that are “invisible”, all with a 10% or lower finding. Brothers and sisters who have served their country, and this is the thanks we get when shit didn’t go as planned. I know that this is happening to many service members, military wide. I know that this is happening because our disabilities are invisible and easy to dismiss. Veterans are slipping through the cracks, and Congress and the DoD is not only letting it happen, but damn well encouraging it.

This is the first in what will hopefully be a series of posts on navigating disability in the military health care system.

CFS/ME and “faulty illness beliefs”: The incredible hubris of the psychiatro-patriarchal complex

22 October, 2009blaming, medical practicecfids, cfs, cfs/me, disability, fibromyalgia, gulf war syndrome, illness beliefs, irritable bowel syndrome, me, psychological, psychologisation, psychologization, symptoms, wesselylauredhel

This post was originally posted on March 19, 2009 at Hoyden About Town.

New Scientist this week published an interview with infamous psychiatrist Simon Wessely. Wessely persists in believing, in the face of all the evidence, that Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME)* is a uniquely UK/American psychological condition caused by internet-triggered “faulty illness beliefs”.

Here’s a bit. Read the rest at the link.

Mind over body?

Can people think themselves sick? This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome has led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them. Clare Wilson asks what it’s like to be disliked by people you’re trying to help.

How might most of us experience the effects of the mind on the body?

In an average week you probably experience numerous examples of how what’s going on around you affects your subjective health. Most people instinctively know that when bad things happen, they affect your body. You can’t sleep, you feel anxious, you’ve got butterflies in your stomach… you feel awful.

When does that turn into an illness?

Such symptoms only become a problem when people get trapped in excessively narrow explanations for illness – when they exclude any broader consideration of the many reasons why we feel the way we do. This is where the internet can do real harm. And sometimes people fall into the hands of charlatans who give them bogus explanations. […]

Continue reading CFS/ME and “faulty illness beliefs”: The incredible hubris of the psychiatro-patriarchal complex →

Disability, Gender, and Poverty

22 October, 2009class issues, intersectionalityabby jean

I came across a new study by the Center for Economic and Policy Research, a D.C. think tank, examining the relationship between disability and poverty (pdf).

I was very interested to read this because, while its not discussed in this study, poverty in the United States affects women at rates much higher than men. “The US Census, which uses a comparatively conservative absolute poverty measure, reported in the last decennial census that overall 17% of females, compared to 13% of males, age 18 to 64 living in the largest US cities, had incomes below the poverty threshold. Likewise, 36% of female headed families with children under age 18, compared to 21% of male headed families with children, in the largest 70 cities, had incomes below the poverty thresholds.” For this reason, I think issues of poverty in general affect more women than they do men. Studies have also found that “women are more likely to experience disability than men, particularly disabilities related to mental health,” so the population of people with disabilities living in poverty is likely to have significant numbers of women in it.

According to the study, disability is an enormous factor in poverty. “About half of all working-age adults who experience income poverty have a disability, and … almost two-thirds of all such adults experiencing long-term, income poverty have a disability.” This means that, although poverty is often thought of as an issue primarily affecting Latinos, African-Americans, and other minority ethnic and racial groups, “people with disabilities account for a larger share of those experiencing income poverty than people in any single minority or ethnic group — or, in fact, all minority ethnic and racial groups combined.”

The study gives more information on the prevalence of disability in the overall population, finding that about 18.7% of the non-institutionalized population (excluding group homes, jails, etc) reported some level of disability. About two-thirds of those people had a disability that “seriously interfered with everyday activities, made it difficult to remain employed, or rendered the person unable to perform or in need of assistance with various functional activities.” Looking at working-age adults over a seven-year period, the study found that “about one in four working-age adults experienced a disability [during the 7 years], but only 10 percent of them were disabled during the entire period.” This supports the view of disability as a dynamic phenomenon that can result in increases and decreases in the severity of impairments over time.

The employment rates for people with disabilities in the United States are strikingly low. Among women age 16 to 64 (considered working-age), about 65.8% of women without disabilities are employed, compared to only 26.9% for women with disabilities. The study attributes this discrepancy to both “the considerably lower rate of labor force participation among people with disabilities and a higher rate of unemployment for people with disabilities in the labor force. This means that women with disabilities are less likely to try to work, but even those who want and are actively seeking work are less likely to find it than women without disabilities. (I should note that per the study, “a number of EU nations — including all Nordic nations –and Canada have higher levels of employment among people with disabilities than the United States.”)

These disability rates and low employment rates have a drastic effect on poverty for people with disabilities. Of those working-age adults who experience poverty for at least 12 months, about half have at least one disability. Of those who experience longer term poverty, defined as at least 36 months of poverty during a 48-month period, have one or more disabilities. This does not mean that having a disability causes a person to become poor, or that being poor causes a person to become disabled, but suggests that there is a strong relationship between the two. A person who is poor and cannot access meaningful health care is unlikely to receive the treatment, aids, and other assistance that would help her to manage her disabilities. A person who is disabled is, as shown above, likely to have difficulty finding or maintaining employment, causing income loss and pushing them towards poverty. Basically, the two conditions reinforce each other and make it more difficult for an individual to address either one.

But we’re not done – there’s an additional problem. The poverty estimates discussed above define poverty using the Federal Poverty Rate, a rate determined by the U.S. Government and adjusted each year. Currently, a single adult without children is considered “poor” only if she earns or otherwise receives less than $903 per month, $10,836 a year. If she has a kid, the family is considered poor only if they receive less than $1,214 a month or $14,568 a year. There are significant criticisms of the current rate, which is calculated primarily on the cost of food and doesn’t account for regional differences in housing costs. Another problem with the rate, though, is that it looks only at income coming into a household and not the necessary costs – which would likely be higher for people with disabilities, who need medical care, assistants, mobility aids, or other costs to achieve the same level of functioning as a person without a disability.

This means that people with disabilities are “40% to 200% more likely to experience various material hardships than people without such disabilities … among persons living below the current poverty line, a person with a disability would require income of roughly two to three times the poverty line to have the same lower risk of experiencing most material hardships as a person without a disability.”

I read A LOT about poverty and its causes and how it can be addressed through policy solutions and why current policies aren’t working. But the idea of viewing poverty as a disability-related issue is a new one for me. The study explains that this is common, as “contemporary policy debate and research about income poverty in the United States is largely silent about disability… books and papers by leading income-poverty experts and researchers only rarely discuss disability, if at all.” The mention a recent set of papers presented by the Brookings Institute on “high-priority poverty strategies for the next decade” that briefly mentioned disability issues in passing, instead focusing largely on issues of marriage. This is another way the issue intersects with feminism – many contemporary poverty policies are aimed at encouraging poor women to marry or penalizing them for having children, policies based on stereotypes of “welfare queens” or poor women having extra babies in order to collect additional welfare money.

This study makes clear that poverty must be examined and understood through a lens of disability in order for us to create and implement policies that will adequately address the realities. People with disabilities are much more likely to experience poverty than people without disabilities, and the vast majority of people who experience long-term poverty have disabilities. People with disabilities are less able to obtain employment even if they are actively seeking it. And people with disabilities are likely to experience more significant material hardships (lack of shelter, food, etc) than people without disabilities even if both are equally poor according to the Federal Poverty Level.

There is a glimmer of hope in the study, though, showing that this is not an inherent or unavoidable situation for people with disabilities. In fact, the study found that “the U.S. is a notable outlier when it comes to poverty rates for disabilities. The U.S. has a higher income poverty rate for people with disabilities than any other nation in Western Europe as well as Australia and Canada. A handful of nations – again mostly Nordic – have eliminated the disparity in poverty rates between people with disabilities and those with no disabilities.”

So my plan is either to import Nordic social policies or just export myself to Scandinavia. See you in Reykjavík!

Barbara Moore: Feminist, Lawyer, Writer & Grad Student of the U of Melb. 1953-2009

22 October, 2009biographylauredhel

This is cross-posted with permission from the original guest author. It was first posted as a Friday Hoyden feature at Hoyden About Town on September 4, 2009.]

This obituary has been provided by Marion May Campbell, who supervised Barbara Moore’s thesis, The Art of Being a Tortoise: Life in the Slow Lane. The thesis is being edited for submission for a Master of Arts by Research in Creative Writing at the School of Culture & Communication, University of Melbourne. Many thanks to Marion for sharing Barbara’s life with us. Three excerpts from Barbara’s memoir have been included at the foot of the post, with the permission of her family and supervisor.

Image: Barbara Moore and her sister, Anne. [with permission]

Early Life

Born to an Irish-Australian family in the northern Melbourne suburb of Reservoir, Barbara Moore contracted in early infancy a virulent form of infantile rheumatoid arthritis, which went undiagnosed until she was nine. At this stage she was immobilised for ten weeks in a plaster cast, which effectively stole from her much of her remaining mobility. Despite shocking chronic pain, Barbara completed high school and began studies in law at RMIT in the early 1970s, performing well enough there to gain entry to study Law at the University of Melbourne. She persisted with her application, responding with a fiercely defiant stare to the interviewing professor’s question as to whether she thought she had a right to deprive a fine young man of a place. She loved those student years, especially revelling in the companionship and conviviality she found as a resident at St Mary’s College.

After Graduation

After graduation, having gained solid to good honours grades in many subjects, Barbara worked in the Auditor General’s office and later in the Freedom of Information office. While she could still manage limited walking, she drove a car to her city-based work and began to pay off her own town house, her courage and persistence having brought down barriers like her bank manager’s reluctance to offer a loan to a single disabled woman.

In the early 1990s, as her mobility became further reduced through the chronic rheumatoid arthritis, Barbara decided to retire from the Law to devote herself to writing. She enrolled in a Graduate Diploma in Professional Writing at RMIT, where she received an award for her outstanding work. One of her stories about her friendship with an old German priest was made into a superb short documentary film by a graduate filmmaking student. Barbara completed her graduate diploma amassing lots of distinctions for work produced across the genres.

Book cover - The Case of the Disappearing Seals Barbara began writing educational children’s books. Four of these were published by Pearsons, and translated into many languages. She told me, her eyes sparkling with mirth, that her children’s books sold well in Korea and that she was ‘hot in Siberia’.

During this time her condition had worsened to the degree that she had to give up independent living and move into a select retirement home, in which she had her own apartment and wheelchair access to a beautiful neighbouring park. She also was an inveterate poet, ranging from witty, light and nonsense verse to metaphysical conceits of considerable accomplishment. She loved the haiku form, and held workshops for fellow residents.

Master of Arts

It was from here that she enquired about the possibility of doing a Master of Arts by Research in Creative Writing with us at the University of Melbourne in the then Department of English. Initially Barbara didn’t proceed at first, because she was no longer able to type for herself. When the Disability Services Unit offered accommodations in the form of technical and carer’s support, she was delighted to embark on the Master’s the following year. After two years of study, Barbara was awarded the Fay Marle Scholarship, which helped her enormously and gave her a great boost of encouragement.

I agreed to drive out to Balwyn for Barbara’s supervisory sessions once a month, when Barbara’s health made this possible. I was shocked and moved to meet this diminutive woman whose body was severely affected by chronic rheumatoid arthritis. Visible joints were fiercely red, swollen, and twisted. Despite pain always 8/10 and often at 9/10, she was never was able to take painkillers, due to her severe allergies. Yet, here she was, in her cropped auburn hair, brightly dressed in funky earrings and striped stockings, brimming with intelligence and wit, ready to get the maximum out of our 2-3 hour sessions, which always began with a cappuccino and cake for Barbara.

Her project for her Masters thesis, entitled ‘The Art of Being a Tortoise: Life in the Slow Lane’, is an episodic, acutely vivid, at times heart-breaking, but often hilarious disability memoir. Although Barbara did not think the memoir was as polished as she might have liked, I know that what I read was pretty much ready to go, and I believe that Barbara has written at least another 10,000 words since then. The pace was frustratingly slow for both of us, and held up by Barbara’s frequent hospital stays due to accident and infection; however, I thoroughly enjoyed working with her, because of the sheer courage, tenacity and wickedly irreverent sense of humour she always exhibited. It would be hard to find a more fiercely funny feminist socialist than this incredibly spirited woman.

Fighting to Finish the Thesis

A week before Barbara passed away, when she mouthed to me that she was in fact dying, I promised her that I would do this in consultation with her sister Anne Duggan, herself a graduate of Melbourne. Barbara nodded her consent and thanks. It also meant a lot to her niece, Frances Overton, an undergraduate in the School of Education, who has worked devotedly at Barbara’s side every weekend, typing to Barbara’s dictation.

It was only in May that Barbara went into rapid deterioration necessitating what we thought would be respite care for a while, to try to deal with her nausea, reactive depression and acute discomfort. Tragically, it became apparent that something more radical was wrong; the wheelchair was not even an occasional option any more and she lost weight rapidly, alarming for one already so fragile.

Immobilised and isolated over these weeks, Barbara’s great hope was to receive the contract for her book of poetry from Pan Macmillan, that her publisher, Jenny Zimmer, had promised back in March. I assured Barbara that I would telephone Jenny to see what was happening. It was quickly apparent that while Jenny was serious about wanting to publish the work, the global economic downturn had put question marks over the budget. Jenny suggested that a possible subsidy from the University of Melbourne might help. I promised to enquire, knowing that in theory this was only available for staff. Nevertheless Allison Dutke was wonderful making enquiries and paving the way for a possible extenuating-circumstances application. However, I received no reply to phone calls and emails from Pan Macmillan over these weeks and was reluctant to return to the Arcadia nursing home in Essendon with such a bleak tidings. I eventually steeled myself to do so, feeling that I had let Barbara down dreadfully.

It was immediately evident on my last visit that Barbara, who could no longer eat or speak, had little time remaining. I left her bedside vowing to her that I’d do my best to see her poetry published, her Master’s submitted and if possible published as well. On receipt of my urgent email Jenny Zimmer was fantastic and flew into action, despite the budget problems, expediting a contract. Barbara received the news with a smile of great relief and was able to hear congratulations from all the nursing staff. The book, illustrated by Barbara’s Concierge artist friend, Roma McLaughlin, will be launched here in Melbourne before Christmas.

I have just been re-reading some of Barbara’s thesis and her voice is utterly alive across these pages. I am grateful to have had the friendship and inspiration from this extraordinarily courageous, funny and highly creative woman. I am also deeply grateful for the way everyone at the University of Melbourne, from Jessica Rose of the School of C&C, Mathilde Lochert the Manager of C&C, to Matthew Brett of the DSU, and Allison Dutka, who all showed extraordinary patience and sensitivity to Barbara’s predicaments and her ‘life in the slow lane’. I dearly hope that her published work will be an enduring testimony not just to this woman’s brilliance, but also to the immense support that her efforts attracted at the University of Melbourne.

Excerpts from Barbara Moore’s memoir, The Art of Being a Tortoise: Life in the Slow Lane

[Click through to read the excerpts.]
Continue reading Barbara Moore: Feminist, Lawyer, Writer & Grad Student of the U of Melb. 1953-2009 →

The Negative Side of Positive Thinking

21 October, 2009blaming, bodies, class issues, intersectionality, media and pop culture, shamingableism, advice, disability, exclusion, illness beliefs, problematic attitudes, self-help, the secretAnnaham

“I don’t have time for positive thinking. I spend all of that time thinking negatively.” –Kathy Griffin

I might as well come right out and say it: I highly dislike the whole positive thinking movement. I would say “I hate it,” but that might get me accused of being bitter, cynical, negative, and many other colorful things in the comments. I do not dispute that I am, at times, all of those things. However, the fact that so many people take the construct of “positive thinking” as the big-T Truth on how people other than themselves can (apparently) improve their own circumstances by thinking “positively” is something that I find very troubling and a little bit scary, and also a bit naive.

You’ve probably heard of positive thinking and its (supposed) benefits. You’ve also probably heard of things like The Secret, which is a self-help book and DVD (and they have other products, too, including a daily planner and something called an “affirmation journal”). For those of you who have had the good fortune to not have come into contact with The Secret, the basic premise is something that sounds pretty innocuous at first, if you don’t examine it too closely or think about it too hard: there is something called “the Law of Attraction,” which posits that the individual can attract their own good or bad circumstances in life just by thinking about them.

I want to stress the part about the “bad circumstances” here. If you swallow that bait–which, like most bait, conceals a dangerous trap–here is what you are buying into: I can attract good things by using my thoughts. If I think positively, I will attract good things.

However, the other side of such a dichotomy is–to put it mildly–really creepy, at least for those of us who have health issues and other problems beyond individual control. I will use myself as an example here: I have fibromyalgia. According to the dubious logic employed in The Secret, I have somehow attracted this. And, according to The Secret, I can think my way out of it. I can be CURED!

Oh, wait. My condition does not have a cure, and thinking one’s way out of a chronic condition is generally not recommended by certified medical professionals. However, according to the “Law of Attraction,” if I don’t think my way out of my condition, or can’t, then I basically deserve whatever happens to me. I brought it on myself, after all.

Therein lies the problem: This type of philosophy places an untoward emphasis on the individual: You control your reality. You control what happens to you. You control how much money you make. You deserve the best. Solving problems or helping others is beneath you, because it is all about you. You’ve got the world on a string, (sittin’ on a rainbow!) and it’s yours for the taking. Why help others, when you can just attract everything you want with your thoughts?

By now, you are probably starting to see exactly why this way of thinking is so troubling, particularly if you are a feminist, have a disability, are aware of social justice issues, or are not C. Montgomery Burns and therefore obsessed with your millions (and not much else).

What is so problematic about The Secret and many other self-help products is that they, however indirectly, make the status quo feel better about itself. People who buy into the “Law of Attraction” philosophy are not actually changing the world; no, that would take actual work. Instead, sayeth the Law, why not just think about changing the world, and let The Secret’s specious (and incorrect) use of quantum physics do the rest? See? Wasn’t that way easier than, ugh, going out and doing things?!

Telling someone to just “think positive” will not help her or him. I know that’s a rather harsh statement to make. I have had people “helpfully suggest” positive thinking (numerous times, I might add) in order to help with my illness. It is supremely frustrating, and it also makes me want to ignore whomever has offered that particular fool’s gold nugget o’wisdom. I get that people are scared of illness, disability, and death, and I understand why they are scared. But shaming people–particularly those with disabilities, chronic pain, mental health issues, and other chronic conditions–into silence by “helpfully” suggesting that they “think more positively”–and thereby shutting down the conversation or any room for the PWD to defend hirself–is not a solution. Rather, it just reinforces the it’s all about me claptrap that so much of the self-help industry traffics in; such “helpful suggestions,” oftentimes, are really meant to make the person who offers them feel better about hirself, and are not offered out of concern for the PWD or whomever else is unlucky enough to have been outed as a non-Positive Thinker.

After all, when someone offers those types of “helpful” suggestions to a non-Positive thinker–particularly PWDs or other people who have been marginalized by various cultural institutions–what she or he is saying starts to sound like, “I don’t take your experiences seriously. I care about expressing my opinions about your life and how you live it, so I can feel like I’m doing something and thus feel better about myself.” So, in effect, it really becomes all about them once again. And, in their minds, it is all about them, because the latest self-help craze told them so!

I will end with a quote from disability scholar Susan Wendell:

[T]he idea that the mind is controlling the body is employed even when physical causes of a patient’s symptoms are identified clearly…The thought that ‘she could be cured if only she wanted to get well’ is comforting…to those who feel the need to assign a cause and cannot find another, and to those who want to believe that they will avoid a similar disaster because they have healthier, or at least different, psyches. (The Rejected Body, 1998)

The Pain of House

21 October, 2009media and pop culture, shamingdrugs are bad mmm'kay, House M.D., media and pop culture, pain management, shaming, televisionOuyang Dan

Hugh Laurie as Dr. House posed as a Caduceus with wings and two large snakes wrapped around his body on a blue field. Caption reads "Incurably Himself". — Hugh Laurie as Dr. House, a white man posed as a Caduceus with wings and two large snakes wrapped around his body on a blue field. Caption reads "Incurably Himself".

I am a pop-culture junkie. If you have been playing along at home long enough this is common knowledge. I have been a big fan of House, M.D. since it’s poorly lit pilot. I am simultaneously appalled and amused by his crass behavior. Even the best feminist in me laughs and fairly inappropriate moments.

I have seen and read plenty of critques concerning Dr. House and his manner. I have chewed out my share of doctors for acting like him as if it makes them seem clever. He is a character that is worth critiquing on many levels and for many reasons from many points of view.

What I haven’t seen is a lot of criticism of the characters assembled around House. From Dr. Wilson, or Dr. Cuddy, or the myriad staff members he has had around him (yes, even Dr. Cameron-Chase) I have watched for nigh on five seasons now as all of the people who claim to care about him have done little more than chastise and concern troll his life. Most notably, his addiction to Vicodin as his chosen method of pain management.

A repeated theme throughout the series has been watching person after person in House’s life try to trick or otherwise convince him that he should quit taking Vicodin and learn how to deal with his pain. They constantly badger him about his addiction, and will go to great lengths to get him to quit taking his pain medication.

Only a person who has never experienced chronic pain would dare criticize a person for their pain management.

Because, like it or not, Dr. Gregory House is managing his pain. Sure, he is an addict. There is little argument there. The character admits it freely. In his own words he says that he takes a lot of pills because he is in a lot of pain. Whatever your feelings on narcotic medication it is a proven method for making intense and chronic pain manageable, and a down side to that is that narcotic drugs can in fact be dependency and/or addiction forming. The presence of an addiction does not take away the fact that the pain beneath it is real. When a doctor and a patient together decide to pursue pain management via narcotics such as Vicodin they will weigh the pros and cons of such treatment. One of the cons that is weighed is the fact that a person can develop an addiction to a drug and a tolerance that will probably mean their intake will increase over time. As with any course of treatment the costs must be weighed with the benefits.

l7608631709_1435 — Photo: Hugh Laurie as Dr. House, a white man in a presumably porcelain bathtub filled with orange prescription bottles, dressed in a grey suit with his cane.

House is able to function as a result of the Vicodin to which he has become addicted. He is able to be independent in moving and living, not housebound (no pun intended) by his pain. He is able to hold down his job and do it with the skill through which he receives his notoriety. His course of pain management gives him a life and independance that many of us living with pain or other disabilities are hoping to achieve. It might not make him a happy ray of sunshine all the time, but neither does living in agonizing pain all of the time.

It is very condescending for a person who is not living in pain to assume that they know better than that person how to manager hir pain. The way that I see House’s collegues and the people who could pass for his friends treat him over his addiction and the way he manages his pain strikes too close to the way I feel most doctors and friends of those of us living in chronic pain will treat us.

Criticize the way he behaves to his subordinates. Criticize the way he treats those closest to him. But if you don’t know what it is like to live with chronic pain, don’t criticize his decisions as to how he manages his pain. If it’s not your body, frankly, it’s not your business.

Originally posted at random babble…

Conceptualizing disability

21 October, 2009bodies, normality, Uncategorizedautism, body image, communication, conceptions of disability, difference, disability, language, mislabelling, myths and misconceptions, normality, research, science, self-acceptance, social treatment, symptomsamandaw

Amanda flags a great post by Anne C at Existence is Wonderful, which catalogues “three different ways of looking at autism — in terms of neurological structure, in terms of lived experience, and in terms of outward behavior.” And Anne does such wonderful things with this delineation. Click through to read the whole post, which addresses attitudes toward autism in particular, but I think Anne hit on something that can be safely generalized outward — her three approaches toward autism can also, in fact, be three approaches toward disability.

AnneC’s chart: Conceptualizing Autism, transcribed below[1. The chart reads in three columns, transcribed here:

* Not Outwardly Visible (Indicated by comparison studies of tissues from autistic and non-autistic brains, and some imaging studies)
* Neurology (Brain Structure/Wiring): Autistic and non-autistic brains are different at the physical level!
* Some studies suggest: Differences in “minicolumn” cell concentration and size; Local/global processing differences; White/gray matter ratio differences … but there is still no conclusive “autism brain scan.”

* Not Outwardly Visible (Can be extrapolated from tendencies in performing certain cognitive tasks, and from autistic self-reports and introspection)
* Cognitive & Perceptual Style: What characterizes the experience of being Autistic
* Tendency to notice and attend to different stimuli than non-autistic people; Language processing differences (learns and uses language atypically); Sensory processing differences; Different memory and problem-solving strategies

* Outwardly Visible (Patterns & tendencies in a person’s actions, demeanor, etc.)
* Observable Traits/Behavior: What usually gets a person identified/diagnosed as Autistic
* Atypical/”uneven” development (skills acquired in nonstandard order and manner); Diagnostic criteria (i.e. DSM); Behavioral tendencies indicate underlying differences, but do not comprise those differences!

]

Some highlights, all emphasis mine.

My guess is that there are probably multiple underlying structural variations that can produce “autistic phenotypes”, and it will be interesting to see how this pans out, but at any rate, one important aspect of how I presently conceptualize autism is the fact that some structural differences do seem to really exist. And if the difference does indeed go “all the way down” to the brain, as it appears to, then it makes very little sense to (as some seem to) view autism as some kind of disruptive “module” overlaid upon a typical brain.

This is significant both in the cognitive science and the ethics realm, as it indicates (a) that experiments presuming autistic brains to be “broken versions of normal brains” are likely useless, and (b) that the best ways to help autistic people learn and develop functional skills are those which acknowledge an underlying and pervasive difference as opposed to those which presume that autism can be “removed” or “trained out” by simply eliminating surface behaviors.

Yes! Autism, or any disability, is not a case of “a normal brain gone wrong.” It is not a defect or even a modification of a “normal” brain. It is, simply put, variation. We will never overcome society’s confusion and mistreatment toward pwd as long as we think there is any such thing as a “normal” brain (or body) at all. Is any one color or pattern of a cat’s coat a “normal” one? Or are there many varieties, none inherently better or more-important than the others?

At heart of society’s approach toward disability is the assumption that there is a standard template for the human body, and if any one body turns out to be different, it is a deviation from that standard. As such, the solution to any problems resulting from said differences is to attempt to make up for that “deviation,” to attempt to make the “defective” body more like the standard template in whatever way possible.

Put this way, it is obvious that this approach is misguided at best. The solution is not to change the individual body to fit the narrow, faulty expectations, but to adjust those expectations to include the range and diversity of the human experience.

Similarly:

Mind you, none of this is meant to imply that I (or the researchers engaging in the experiments demonstrating visual-spatial trends in autistic persons) believe that autistic people cannot be disabled. Certainly, “uneven” development (which may include significant delays alongside “advanced” skill acquisition in some individuals), communication difficulties, and consequent social, educational, and occupational issues are very real. However, the existence of real disabilities and difficulties need not imply that the “whole person” is somehow diminished by the fact of being autistic, or that one cannot have attributes which exist as both strength and weakness depending upon the context.

This is where Anne comes back around to detail the third approach (outwardly knowable traits). She observes:

The orange column on the right of the diagram summarizes what most people probably think of as “autism” — that is, the externally-visible things that generally get people suspected of being, or identified as being, autistic in the first place.

This is where we see such things as diagnostic checklists, observations about a person’s developmental milestones (and when/if they meet certain expected ones), outward actions, language use, body language, tone of voice, social/educational/occupational success (or lack thereof) in the absence of modifying factors, etc.

What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

…which, honestly, is a bit scary and unsettling for those of us who are going to be the ones to bear the consequences of any such things.

Why can’t disorder be beautiful?

20 October, 2009class issues, feminism, introspectivechronic illness, chronic pain conditions, disability, life, personal, self-acceptance, self-perception, spoonsamandaw

The mess in my apartment never goes away. We get this room clean, and that room clean, and the other, but rarely all at the same time. Even when we push to get everything in order, there is always something neglected — usually my mess in the second bedroom where I keep all my art supplies, strewn about, which I always promise to myself to organize but never get around to doing.

I’ll organize this, and organize that, and it will help me keep my life together for a time — organizing my closet or my deskspace or the living room — but as soon as a stressful time comes, and they come with regularity, the organization goes out the window — I throw my clothes on the floor and never pick them up, food kept on my desk with nail polish and sewing thread and sticky notes — it’s always the concept of, do what is necessary now and put everything in place later, when you’ve returned to “normal” energy state and can handle it.

But life seems to move at a faster pace than my body can keep up with. Maybe could keep up if I had a normal amount of energy, then I’d have the space and drive to get that make-up work done regularly, if I still weren’t able to just maintain everything as I went along (that being the idealized perfect state to which we aspire, right?). Maybe if I had the energy that I have when I’m at my best — but all the time — things would be great. And when I’m at my best energy level, I feel like I could continue things like that, if only I did this and changed that and kept things this way. And I try those things as they come to me, I am constantly reorganizing my entire life, never stop fine-tuning, trying to make things more efficient. But it’s never enough, I just don’t have enough in me to keep up with it all.

So maybe we get the junk off the floor and vacuum and swiffer everything, and tidy up around the edges of things, but there’s still that mess within those edges, still always something just sitting in a jumbled pile that I’m supposed to get to later. No matter how well I am — and even with an able-bodied husband doing more than his share of the work — we never get it all.

I have trouble thinking when I can see clutter. What it is about it, I don’t know, surely some gender considerations there, my insecurity about my disability always looming, and my personal idiosyncracies. But when there is visual clutter, my brain locks up and it is so much harder to process very basic things. And if only it were as easy as getting up and taking care of the clutter, then the energy I would be using on thought processing goes to the physical labor of cleaning, and I’m back to blank square one anyway, and a day later the clutter is back again.

And that’s the cycle I find myself in.

One day, a couple months ago, I sat in this chair trying to comprehend what I was reading, with a mess on the floor in my peripheral vision, and I spun around and thought to myself, why can’t this be beautiful?

This mess, this disorder, everything that comes with a life well-lived? The clothing on the floor, the half-filled mug of tea, the unmade bed, the shoes in the entryway, papers scattered about? Why do I feel like it weighs me down? Why can’t it be like the wrinkles and mottled skin and greying hair acquired with age: a reminder of everything you’ve done to earn them, a window into the life you’ve lived to get them?

Why can’t it be an indicator of richness? Why can’t it be something positive?

That one moment, I felt it deep inside. And it hasn’t come back. I just can’t look around and not feel weighed down by everything being so disordered, feel it reflects poorly on me, look at it and see nothing more than “something I should be doing but can’t do.” Something that is my responsibility, but I haven’t the capability. That is what pulls at me when I look at my mess, my beautiful mess. All I can see is everything I can’t do, while simultaneously feeling, in the back of my head, that I can do it but choose not to and that I am just of poor character, lazy, unmotivated, irresponsible, inconsiderate, slothful and selfish…

Maybe my physical mess, then, is a manifestation of my mental mess.

I just want to know. Why can’t I be beautiful too? If this is all I can do? Why do I feel lesser than the middle class folks who have these lovely tidy homes, not perfect and still full of personality, but tidy? They get to be beautiful, they get to be responsible and considerate. Why can’t I be too, if this is all I can do?

What will it take for me to look at that mess again, and see something grand? Will I ever see it again?

FWD/Forward

FWD (feminists with disabilities) for a way forward