Disability 101: Defining Disability

Hello, everyone! I am Annaham of HamBlog, and since I’ve written a Disability 101 series of posts, I thought it would be a good idea to cross-post some of the series here.  My inspiration was piqued by the Finally Feminism 101 blog, which is brilliantly maintained by tigtog of Hoyden About Town. I hope that this series will answer some 101-ish questions about disability. My hope is that this will serve as a starting point for people (of all abilities) who wish to learn more about disability, chronic illnesses and health conditions, and the issues surrounding disability/CI/CHC terms, etiquette, and frequently-asked (and pontificated-upon) questions. (In case you’re wondering who the hell I am and/or why I am taking on this project, my bio is located here.)

If you have any comments or suggestions, please feel free to leave them in the comments field. Please be respectful and on-topic when commenting.
Also, please keep in mind that I do not speak for *all* PWDs and folks with chronic illnesses or health conditions in this series. It is not intended as “the” guide to 101 questions on disability; my intent is to offer (pretty subjective) answers to common questions on disability, and of course, there will be folks who disagree.

Thanks, and enjoy!

What is “disability?”

The World Health Organization defines “disability” in the following way: “Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.”

Additionally: “[D]isability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.” [ Source]

But aren’t we all disabled in some way?

No. This sort of “folk wisdom” implies, directly or indirectly, that mundane things—things that may be minor inconveniences (at least for some able-bodied people–those with whom this bit of “wisdom” seems to be most popular), but that are not fundamentally impairing or restrictive to one’s quality of life or participation in civic and/or private life—are disabling, when they are, in fact, not. Disability, additionally, is a term that refers to a long-term or lifelong condition.

What is “ableism?”

Ableism refers to discrimination, devaluation, misconceptions, stereotypes, and prejudice—conscious or unconscious—of and against people with disabilities, the chronically ill, and people with chronic health conditions. As a culturally-based structure that often intersects with other oppressive “isms,” systems of privilege, and “-phobias” (such as racism, sexism, homophobia, xenophobia, white privilege, cisgendered privilege, class/economic privilege, and transphobia) ableism assumes that able-bodied people are the “norm” in society, and as a result, culture, various institutions, attitudes and social mores are formed in accordance with the needs of able-bodied people.

What is meant by the terms AB and TAB?

“AB” is an abbreviation for able-bodied; “TAB” is a slightly more to-the-point abbreviation meaning “Temporarily Able-Bodied.” TAB refers to the inevitable—namely, that most of us will face disability at some point in our lives; whether it comes sooner or later varies depending upon one’s circumstances.

Originally posted at Faces of Fibro.

By 7 October, 2009.    101, language  , , ,  

It’s Your Fault: Socially Acceptable Disability and Popular Causes

Read a Czech translation of this post, done by Vera! Thank you, Vera!

In the furor of discussion on my post about breast cancer awareness campaigns which use exclusionary tactics, several commenters brought up some important points when we talked about why breast cancer has become such a high profile cause. Anna pointed out that breast cancer awareness started as a grassroots movement among women who were angry about the lack of awareness and the large numbers of preventable deaths going on, many commenters (including myself) pointed to the potential monetary gains to be reaped for companies which support charitable causes in order to be seen as socially responsible, and both kaninchenzero and Amandaw referenced the fact that breast cancer is a form of “no fault” illness, in the sense that people who get breast cancer are presumed to be innocent victims. The cancer, in other words, is not their fault.

This is not another post about breast cancer.

But it is a post about why some medical conditions become popular causes, and others do not. Because, in America, we definitely have ideas about what makes a good cause, and what does not, and a lot of those ideas are rooted in the idea of personal responsibility. This concept has deep roots in American culture and society, and it has pernicious and lingering effects which continue to this day.

The entire nature of American social policy is specifically structured around the idea that we can determine who is at fault for everything, that specific individuals can be faulted for things, and that those individuals should not be helped. Take the American approach to the poor. Despite ample evidence to the contrary, many people seem to believe that people should be held personally accountable for their poverty. Even though poverty is a classic example of an intersectional social issue in which the class one is born into, one’s race, and one’s gender all play a role, people persist in thinking that if poor people “just worked a little harder” or “showed some initiative,” then they wouldn’t be poor. I actually had a sociology professor tell me once that if the poor “weren’t so lazy, they wouldn’t be poor.”

Lung cancer was specifically brought up as a great example of “it’s your fault”  in action. Lung cancer is the deadliest cancer in the United States, in terms of numbers of people who die from it each year (so says the American Cancer Society). However, it is not nearly as popular, as a cause, as breast cancer. Why is that? Because only icky gross people who smoke get lung cancer.

That’s right. Did you know that people exposed to carcinogens due to their jobs/social class/homes, second hand smoke, particulates in the air which cause cancers, asbestos, etc, don’t get lung cancer? Only smokers do. Fact! And that means that lung cancer can safely be ignored, as a cause, because people are personally responsible for getting it. I’ve known a few people with lung cancer in my day, and every one of them has had some version of this conversation over and over and over again during diagnosis, treatment, and recovery:

A: “I have cancer.”

B: “That’s terrible, what kind?”

A: “Lung cancer.”

B: “Oh.”

A: “…”

B: “Do you smoke?”

Cardiovascular disease is another example of a very serious medical issue which involves huge numbers of people and is not highly publicized. Sure, the American Heart Association has some PSAs out, and some branded products of questionable usefulness, but many people are not aware of the scope of cardiovascular disease and its causes. Screening, prevention, and treatment are not as freely provided as services to support people with more palatable conditions. Why? Because only gross fat lazy people get cardiovascular diseases, so it’s their fault, therefore, it’s not a social cause.

Diabetes, again, another condition which is deemed to be the fault of the person who has it. If you are diabetic, it must be your fault. In addition to displaying a limited understanding of diabetes and how diabetes works (hey, did you know that there are different forms of diabetes?), this is also not terribly beneficial when it comes to actually dealing with diabetes.

The list goes on. You get the point. If a medical condition can safely be blamed on the person who has it, we can safely and collectively ignore it, as a society. If we were to admit that these conditions should be social causes and should be addressed, that would be tantamount to saying that we should provide support to people regardless of fault. And that, as we all know, is socialism.

AIDS, strangely, is a condition associated with personal responsibility which has become a cause, to some extent, although not on the same level as breast cancer. I think that this is in part due to some serious grassroots lobbying on the part of very diverse folks. But at the start? AIDS was written off as “gay cancer” and ignored. It was only after people realized that things like a tainted blood supply, needlestick incidents at hospitals, and heterosexual sex could be vectors of transmission that AIDS started enjoying some popular attention. AIDS was also furthered as a cause when prominent members of society openly discussed the fact that they had AIDS, humanizing the cause. Yet, AIDS continues to be a highly stigmatized condition. Fundamentalist preachers continue to rant about how the gays are getting their compeuppance, for example, and people with AIDS are usually assumed to have gotten it because of risky sex or drug abuse (in all fairness, IV drug users are a huge risk group for AIDS, in part because social programs like needle exchanges are severely limited, because Americans are not interested in providing intervention for preventable diseases which are deemed to be the fault of reckless or morally unacceptable behavior).

Fibromyalgia is, I think, another great example of how Americans cannot deal with medical conditions when they cannot attribute fault or find a causative agent, bundled in with some serious sexism. Although it affects all genders, it is often assumed to be a specifically “female complaint,” and it’s laden with the double burden of being a “faker’s disease” in the eyes of the American public. Who are apparently incredibly knowledgeable about medical issues, especially treatment options, judging from the ever-helpful advice they provide people with all the time. When you can’t point to a causative agent of a condition, people are less likely to accept that the condition actually exists. Even when they are confronted with people who are obviously experiencing that condition.

Mental illness also falls into this category. Because we can’t point to something on a microscope slide, mental illness is assumed, on some level, to be fake or not real. And people with mental illness are assumed to be, in some part, responsible. They must be faking it, because the alternative explanation is that people can be sick without any clear cause, without any neat treatment or cure, and that is unacceptable.

In order to be an acceptable cause to support, a medical condition must be pure and untainted. Victims cannot in any way, shape, or form be responsible for their condition and the condition must have a clear and obvious cause. Thus, awareness campaigns and research and so forth ignore a panoply of serious medical issues, because they do not meet these criteria.

This means that numerous very serious medical issues in this country go underfunded and underaddressed. When education about issues is limited to issues which are considered blameless, people are missing out. Including people who may be at risk. When funding is limited to no-fault conditions, it means that serious issues are allowed to be ignored, and people with conditions linked with personal responsibility have a hard time getting respect, let alone treatment.

This disproportionately impacts some of the most vulnerable populations, like people of low income, who can exercise little choice when it comes to issues like medical conditions caused by occupational exposure, nutritional deficiency, and living in polluted communities.Like people with disabilities who could actually really benefit from, you know, funding for supportive programs.

The thing is that even conditions which can be clearly attributed to lifestyle choices are still intersectional in nature. Plenty of people smoke and do not get lung cancer, for example, just as plenty of people who do not smoke and do not have any other obvious risk factors in their medical histories do get lung cancer. Yet, the failure to even dedicate a little bit of time (comparatively, I am aware that there is ongoing research into lung cancer and that there are educational campaigns) to funding and awareness means that useful information about these conditions remains undiscovered or undistributed.

I was thinking about this lately during the flurry of outrage over domestic violence being listed as a preexisting condition. Domestic violence is another thing which is linked with some sort of personal fault or action on the part of victims. Where’s the outrage about numerous other things being listed as preexisting conditions? Why aren’t we angry about the fact that basically any medical issue/medical history under the Sun is considered a preexisting condition? The very idea of a preexisting condition is exclusionary and repulsive and disgusting.

It doesn’t matter how, why, when, or where the origins of a medical condition or disability lie. What matters is providing the appropriate intervention. To say this, however, is to undermine one of the cornerstones of the American belief system, which is why you so rarely hear it said in the mainstream.

Cross posted on this ain’t livin’

Welcome to FWD/Forward: Feminists With Disabilities For a Way Forward

We’re still new, but it’s time to take us out of the box.

FWD/Forward is a group blog written by a crew of feminists with disabilities who are interested in exploring the intersection between feminism and disability rights activism. It’s going to include cross-posted content from many of our websites, as well as original content written specifically for this site by the contributors. Cross-posted and original content from guest posters will be featured as well.

We are not now and know we never can be representative of all feminists with disabilities. However, over time, we hope to expand the crew of contributors to incorporate as many perspectives as possible, which means that we want to hear from you if you are interested in joining us in any role, whether as a guest blogger or contributor, suggesting post topics, or anything else. We’re looking forward to being a part of the conversation already going on all over the Internet about feminism and disability, and we’re excited about the opportunity to interact with people who are working to change the way in which we think about disability rights activism and feminism.

We’re still nailing down the specifics and working out the fine details of things like our comments policy, but in the coming months, you can look forward to:

  • A disability kindy (pre-101) series for people who are new to disability rights activism
  • Disability 101 for kindy graduates
  • A series of basic intersectionality posts specifically for feminists who are new to disability issues
  • Consciousness-raising posts about identifying as a person with disabilities
  • Discussions about how people without disabilities and feminists without disabilities in particular interact with people with disabilities
  • Disability news quick-hits on ongoing disability issues in the news
  • Link roundups featuring disability news and writing on disability issues from around the Internet
  • Discussions about the language of disability rights activism, from differing terminology used internationally to the specific language used by individual groups which advocate for disability rights
  • Posts about the disproportionate amount of sexual, physical, and social abuse targeted at women with disabilities
  • Posts about people with  invisible disabilities and mental illnesses and challenges unique to those groups
  • Posts about the relationship between disability rights activism, social policy, and the law
  • Discussions of how to be an ally to feminists with disabilities

-The FWD/Forward Crew

By 6 October, 2009.    administrivia