Photo of eight colorful journals displayed on a wooden table.

It’s Personal: Some Reflections on Nonfiction Writing and Chronic Illness

When it comes to actually sitting down and writing, there seems to always be something mental or physical that’s in my way. I suck at poetry, so no writing poetry for me, even if it’s just two or three lines. Short stories? I am terrible at those, too, although I occasionally manage to write one and then forget about it, only to find it years later stuffed away in one of the 25 or so computer desktop folders that I’ve created for my writing. I tried writing a sci-fi novel once, starting when I was 13, stuck to it for a good two years, and only gave up entirely when my very own case of major depressive disorder in high school basically sucked that one out of me.

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Image of a hospital waiting room; photo by Danielle Blumenthal. Used under a Creative Commons (CC) license. https://flic.kr/p/nNYegP

Waiting

Note: This piece was originally written in 2006. I was diagnosed with fibromyalgia a few months after writing it.

I am grinding my teeth.

I know instinctively that I shouldn’t; it makes my jaw hurt and can often lead to a loathsome headache, but right now I have no other outlet.

I sit hunched over in an uncomfortable plastic chair. I’m dressed in old jeans and a sweatshirt that could use a washing, scanning the room like a hungry, angry buzzard on the lookout for a freshly dead creature upon which to feast. I am just that grizzled, as I have been for the three months I’ve been waiting for this appointment.

I started experiencing overwhelming fatigue and joint pain five months prior out of nowhere, and when I reached two months of feeling like I’d been hit by an SUV from the time I woke up in the morning until I went to bed every night, I went to my GP and asked if she could figure out what was wrong. Since a 20-year old presenting with unexplained pain and fatigue was out of her wheelhouse clinically, I was referred to a neurologist. Of course, he had a three-month waiting list.

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Panel 3 Top text: The few inroads that a specifically feminist theory of disability has made have also tended to be advanced by white folks, without much consideration of race. Image: Annaham looks at a pile of books: The Rejected Body by Susan Wendell, Illness as Metaphor by Susan Sontag, Feminism & Disability by Barbara Hillyer, Crip Theory by Robert McRuer, and Extraordinary Bodies by Rosemarie Garland-Thomson. Panel 4 Top text: As Karen DePauw puts it, “[women scholars with disabilities] have explored issues facing (mostly white) females with disabilities and have begun to examine the complexity of difference as a result of the confluence of being female and having a disability.” Image: A mashup of the feminist “woman” symbol and the classic symbol for people with disabilities. Bottom text: DePauw, “Space, the Final Frontier…,” 21.

Drawing Out Whiteness and Disability: Part 4

Previous installments: 1, 2, and 3.

Accessibility note: The image descriptions for this series, since they are very long, can be found under the image .jpgs in each installment, rather than in the alt-text field. 

Click “Read More” to read part 4 of this comic series; click the images to fully enlarge.

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A fat woman in black and white, ruminating.

Not Your Good Fatty: HAES and Disability

Health at every size is a concept embraced by some fat and size acceptance activists. For those not familiar with it, it was popularised by Linda Bacon, and simply put, it suggests that there’s a wide variation of bodies and that people should focus on what makes their bodies healthy, rather than on eating and exercising for weight control. There are a number of components of health at every size, including ‘intuitive eating’ and the concept of ‘joyful movement.’

When I initially heard about HAES back in my nascent days of exploring fat, size, and my relationship with my own body, I was excited about it. I’d been reading a lot of stories about the false beliefs about fat and health, and I liked the idea of a movement specifically reinforcing the idea that being fat doesn’t make you unhealthy, since one of the most common charges levied against us fat folks is that we are unhealthy because we are fat, that fat makes people unhealthy.

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Top text: Unfortunately, the “bootstraps” model of health care and being able to pay for that care has taken root in some Western societies, especially in the U.S.—where “Screw everyone else, I’ve got mine/my needs taken care of!” is something of an ideological stance, especially among conservatives. Image: Several different people object to a different model of health care. Speech bubbles: SOCIALISM! Obama-Care! MY tax dollars going to help poor people? NO! They just need to WORK HARDER to be able to afford insurance! If you’re mad about pre-existing conditions, just don’t get sick! Maybe some of these people without insurance could focus on staying healthy and taking care of themselves, without relying on big government.

Drawing Out Whiteness and Disability: Part 3

Previous installments: part 1; part 2.

Accessibility note: The image descriptions for this series, since they are very long, can be found under the image .jpgs in each installment, rather than in the alt-text field. 

Click “Read More” to read part 3 of this comic series; click the images to fully enlarge.

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Two images. Top text: I am also oppressed, therefore… Image: Image of a white feminist looking perturbed and defensive. Speech bubble: But I’m a feminist! I can’t possibly be racist! ; Top text: Naïve, with a side of STFU. Image: Two people—one a fat white woman with curly hair, and a thin white man with a goatee—stand side by side, looking angry. Speech bubbles: But we’re POST-RACIAL, since the U.S. elected a BLACK PRESIDENT! Stop complaining.

Drawing Out Whiteness and Disability: Part 2

Previously: Part 1.

Accessibility note: The image descriptions for this series, since they are very long, can be found under the image .jpgs in each installment, rather than in the alt-text field. 

Click “Read More” to read part 2 of this comic series; click the images to fully enlarge.

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Image of author Melody Moezzi standing in front of a grafittied wall; image via http://www.penguinspeakersbureau.com/speakers/page/melody_moezzi

“We cannot talk about mental health without talking about prisons”: A Conversation with Melody Moezzi

Human rights activist, attorney, writer, Iranian American, and Muslim American feminist: Melody Moezzi is all of these. She is the award-winning author of War on Error: Real Stories of American Muslims and published her memoir Haldol and Hyacinths: A Bipolar Life last September. She also blogs for the Huffington Post, Ms., and BP Magazine and has provided commentary for CNN, NPR, and BBC, among others. Her memoir is a frank account of her journey with bipolar disorder, her times in and out of mental health care facilities, as well as her life as an Iranian-American woman in Middle America and the South. Written with grace and often hilarious, Moezzi’s book fills a gap in mental illness memoirs, in that is told from her perspective as a Muslim American feminist activist and attorney.

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Image of a snake eating its own tail; via http://theunrecordedman.files.wordpress.com/2013/10/snake-eats-own-tail.jpg

Misunderstanding the Mind/Body Connection

Many people with chronic health conditions, chronic pain, and/or mental health conditions are well aware that the mind can influence how the body feels on both acute and more long-term levels. A Google search for “chronic pain and depression” brings up around 42 million results; it’s not surprising that mental health concerns are a problem when it comes to chronic physical health problems, whether mental health issues precede chronic illness or spring up long after a person has been dealing with chronic pain and illness. In many cases, mental health issues and chronic illness/pain affect each other, but for those who have both, it’s not so much a chicken-or-egg problem of “which came first?” rather than trying to deal with and manage each issue on an ongoing basis.

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A young person receiving a vaccine from an adult.

Arguing About Vaccines While Rome Burns

The United States is deep in the throes of measles outbreaks on two coasts, in the Bay Area and New York City, with isolated patches of the disease elsewhere. This fully vaccine-preventable illness, which was officially ‘eliminated’ from the US, is experiencing a renaissance for one simple reason: people aren’t vaccinating their children, and they aren’t getting their adult boosters to ensure continued immunity throughout life.

It seems absurd, given that measles can be fatal and it can cause long-term neurological impairments in patients who recover from the infection. This applies not just to children, but also immunocompromised adults who can’t get vaccinated; people who are HIV+ or have autoimmune disorders are at serious risk if they get infected with measles. When an easy preventative step is available to address an illness with potentially serious consequences and people aren’t taking advantage of it, one is, quite reasonably, led to ask: why?

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Photo of the author with a book featuring a black and white image of a Heaven's Gate member post-mass suicide. Photo by Anna Hamilton.

Beyond Human: The Heaven’s Gate Cult, Transhumanism, and Me

Heaven’s Gate was an American UFO religious Millenarian group based in San Diego, California, founded in the early 1970s and led by Marshall Applewhite (1931–1997) and Bonnie Nettles (1927–1985). On March 26, 1997, police discovered the bodies of 39 members of the group who had committed mass suicide in order to reach what they believed was an alien space craft following the Comet Hale–Bopp, which was then at its brightest.

–From Wikipedia’s entry on Heaven’s Gate (content warning on link for description of suicide and photos)

I’ve been fascinated with the Heaven’s Gate cult ever since I saw–as an 11 year-old–a huge photograph of the members’ dead bodies, apparently peacefully posed on bunkbeds,  on the front page of my local paper, under the rather alarmist headline (and all-caps) headline HOUSE OF HORROR. As I picked up bits and pieces of information on the group that the news media breathlessly reported throughout April and May of 1997, I began to wonder if the “house of horror” headline was overblown; yes, these folks had committed mass suicide, but they had also found people to whom they could relate and live with peacefully (albeit in a fringe religious group). Was that so horrifying? To most people–and to the media–it seemed like the answer was a resounding yes.

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Disability, through an intersectional lens