All posts by Anna Hamilton

Anna Hamilton is a writer, blogger and social media whiz who has contributed articles, cartoons, and more to publications such as xoJane, Bitch Magazine, Ladyish, The Toast, and Global Comment. She and her partner live in California's Bay Area. You can contact her by visiting her website at http://annaham.net, or email her at hamdotblog[at]gmail.com.

Six Things I’ve Learned From Dealing With Chronic Pain

Six Things I’ve Learned From Dealing With Chronic Pain

As I have written about in many locations around the web (including this site), I have chronic pain and fatigue caused by a condition called fibromyalgia. I started experiencing symptoms at 20, was diagnosed at 21, and in the eight years since my diagnosis have learned some things that may or may not prove useful to both other people with chronic pain and/or health conditions, and “healthy” people as well. The following is less about what having this condition is like on a daily basis (please see my xoJane article linked above for more on those aspects), and more about (insert triumphant violin swells here) WHAT I’VE LEARNED from having a debilitating illness that I will have for the rest of my life:

Sometimes a “positive attitude” is not the best course–try to aim for a realistic attitude instead. I know that maintaining a “positive attitude” is all the rage these days, but for some people it is simply not a great choice. There is no faster way to make yourself feel bad about having “negative” thoughts/energy/whatever than to try to actively banish these thoughts by trying to “think positively” instead of, y’know, dealing with those negative feelings. Bad feelings are a part of life, and they need to be dealt with so you don’t end up making yourself feel worse by trying to wish them away. This is why I try to cultivate a realistic attitude–I have both good days and bad days when it comes to pain and fatigue, and I can acknowledge and work with that instead of stuffing any negative feelings down under the guise of being POSITIVE all of the time.

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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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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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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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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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Drawing Out Whiteness and Disability: Introductory remarks and 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. 

Introductory remarks: I completed the following multi-part, miniature graphic work on whiteness, white privilege and physical (dis)ability in 2010 as part of a final assignment for an anthropology class on the construction of race and ethnicity–and, old as it is, I’ve decided to share the entire work on Disability Intersections for what I hope are fairly obvious reasons. I’m not a professional artist by any stretch of the imagination, but I believe very strongly in both the accessibility of graphic work as a tool for anti-oppression work, and how graphic work can allow certain things to be conveyed that cannot always be conveyed in writing–particularly academic writing.

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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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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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Why Feminist Disability Studies?

Every so often, I remember that even though I’ve left academia for good, there was one part of feminist and disability studies that made me feel less alone, and still does: feminist disability studies.

Although a solid anthology (which I reviewed for Global Comment) on the discipline was published in 2011, feminist disability studies and theory are still on the margins of feminist academia in some places; at least, it was when I was pursuing my M.A. and dealt with higher-ups who couldn’t reconcile the personal and the political (or “real life” and “scholarly praxis”) being so intricately interwoven for people like me. Before I start to sound like one of those “back in my day” grumps (I’m still in my twenties, after all), it’s probably a good idea to give a general overview of why feminist disability studies is necessary, and how it formed.

In doing so, I hope to also make the case as to why a specifically feminist focus on disability–in both academia and activism–is not just “splitting the movement apart” or “making the movement weaker” like some critics of the very idea of intersectionality say happens whenever a person who’s not white, abled, middle-class or higher, straight, or cis points out the issues within feminism. Because despite the best efforts of disabled feminists on the web, in the academy, and in activist groups, disability is still not on the feminist radar by and large.

Although Women’s Studies within the academy has opened up new understandings of gender, sexuality and their interactions with various systems of oppression, it has, like its activist counterpart, been critiqued—and rightly so–for leaving certain people out.

Scholar Chandra Mohanty contends that some Women & Gender Studies programs in the U.S. academy have implicitly supported “a kind of careerist academic feminism whereby the boundaries of the academy stand in for the entire world and feminism becomes a way to advance academic careers rather than a call for fundamental and collective social and economic transformation.” Unsurprisingly, something similar has happened in social justice circles, and online social justice continues to experience  controversies over careerism, representation, and who gets to speak on behalf of “the community.”

In another essay from her 2007 collection Feminism Without Borders, Mohanty argues that some Western feminist groups and texts “[have been] critiqued for their homogenizing, even colonialist, gestures; they have been critiqued, in fact, by those most directly affected by the exclusions that have made possible certain radical and cultural feminist generalizations.” Though Mohanty also notes that such critiques sometimes “have the risk of falling into culturalist arguments,” her point still stands, particularly for feminists and women who have been mostly left out of the movement because they do not fit what has been constructed as the mainstream “feminist” subject position: that of the white, middle-class, heterosexual, able-bodied, “liberated” feminist from the global north. Similar to some of the characteristics of the “normative” Western feminist described above, abledness has been and overwhelmingly continues to be an unspoken norm in both the academy and activist circles; reliance on these unexamined norms continues to take place in feminist spaces as well.

These “social patterns of bias and exclusion,” as Rosemarie Garland-Thomson call them, are “based on ability norms that operate similarly to gender and racial systems.” While such seemingly disparate groups as feminists of color, disabled feminists, trans feminists, and queer feminists may have different issues, they have something significant in common: they’ve all traditionally been excluded from mainstream feminism. Members of these groups, in various venues, have also raised important questions that interrogate who is excluded, why, and what steps can be taken to break that cycle.

However, those with the most privilege have traditionally called the shots as to where the energies, focus and concern are directed within feminist activism and scholarship, and middle-class, heterosexual, able-bodied, white feminists with access to media power have tended to not want to share the spotlight. Like many other groups that don’t quite fit more privileged feminists’ ideas of what “real” feminists are or what a “feminist” issue is, widespread attention paid to feminists with disabilities, and thought given to disability in feminist scholarship, seem noticeably absent within the feminist academy.

Feminist disability theory has been going on, however covertly and perhaps unnoticed by the mainstream, within Women’s Studies and Cultural Studies for many years. Central texts, at least in the U.S., have included Susan Sontag’s Illness as Metaphor (1978), Elaine Scarry’s The Body in Pain (1985), Rosemarie Garland-Thomson’s full-length cultural studies work Extraordinary Bodies (1997), and anthologies such as Gendering Disability (2004), edited by Bonnie G. Smith and Beth Hutchison, as well as the work of scholar-activists such as Barbara Hillyer, Cheryl Marie Wade, and Simi Linton.

Feminist philosophers such as Anita Silvers and Susan Wendell have done invaluable work on invisible disability, chronic illness, and the Western myth of bodily control; additionally, many queer theorists and activists, including Eli Clare, Robert McRuer and Abby Wilkerson, have taken up the disability studies cause under trans, queer and feminist activist and scholarly banners, thus showing that transgender theory, queer disability theory and feminist disability theory are, in fact, related–and are all important to cultural and area studies.

Garland-Thomson offered some useful working guidelines for feminist disability studies and theory in a 2005 article first published in Signs:

 Feminist disability studies…questions our assumptions that disability is a flaw, lack, or excess…it defines disability broadly from a social rather than a medical perspective. Disability, it argues, is a cultural interpretation of human variation rather than an inherent inferiority, a pathology to cure, or an undesirable trait to eliminate. In other words, it finds disability’s significance in interactions between bodies and their social and material environments.

In a 1988 article, feminist philosopher Susan Wendell contended that feminist disability studies cannot be totally, abstractly theoretical: “To build a feminist theory of disability that takes adequate account of our differences, we will need to know how experiences of disability and the social oppression of the disabled interact with sexism, racism and class oppression” (“Toward a Feminist Theory of Disability”).

Feminist disability theory and studies not only offer new possibilities for feminist theory as a whole, but powerfully illuminate issues that have traditionally been important to feminist theory in new and exciting ways, including include abortion and prenatal testing, assisted suicide and the right to die (or live), pace-of-life issues, media culture, cultural messages about the body, the experience of chronic illness and pain, the social construction of “normative” versus non-normative bodies, the medical establishment, labor, and sexuality. However, many feminist theorists and activists currently do not consider these issues from a feminist disability viewpoint at all–much less consider how these issues affect or might affect those living with disabilities and/or chronic health conditions.

Even as it continues to make inroads, feminist disability theory will need to acknowledge and bridge perceived “gaps” between theory and “real life” if it is to remain on the cutting edge; such a continued process could perhaps be modeled on Bonnie Zimmerman’s contention that successful theory should “[root] the production of knowledge in real social relations and commitment to social change.” While the many linguistic accessibility issues with disability theory, feminist theory, and feminist disability theory are beyond the scope of this piece, it’s been a common (and correct) criticism of academic theory that it is written and designed to be understood by an ever-shrinking number of people who have the “right” college or advanced training in the Humanities, social sciences, and/or area studies. This, unfortunately, leaves out people who could also benefit from using theory to understand sociopolitical issues in their own lives–but who might not have the “correct” (or any) credentials.

Although the theoretical is important, in matters of disability and ability, it is equally important to remember that peoples’ lives are still being talked about; no lasting social change is possible if this goes unacknowledged or minimized. Theory that doesn’t take lived experience into account is not very useful, and this is one of the many qualities of an academic approach to social issues that feminist disability theory–like feminist theory, disability theory, and other area studies–needs to keep at the forefront in order to remain vibrant, useful, and interesting.

Just Making Conversation

An odd thing happens to me–at least once every few months–when I go out in public. It’s been happening since I was a teenager, and my most “visible” disability back then was a pronounced limp on my left side. Strangers seem very eager to try to engage me in conversation about the fact that I have a limp, or (more recently) that I use a cane.

I’ll be going about my day and/or doing things that lots of people do–running errands, going to see friends, going out for lunch–and, like the worst clock ever, on some days the annoying alarm of someone being concerned or just curious goes off:

“You have a limp!”

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