FWD/Forward: FWD (feminists with disabilities) for a way forward

Cambodia: Landmines, Disability, and Social Stigma

By meloukhia on 9 February, 2010

It’s hard to get firm numbers on the percentage of Cambodia’s population which is living with disabilities. Part of the problem stems from the stigma which surrounds disability in Cambodia; people with disabilities are regarded with fear and mistrust. A simple action like trying to sell goods to stay alive becomes a challenge when other merchants in the marketplace spit on you and drive you out because you are disabled, and it’s not surprising to learn that much of Cambodia’s disabled population lives in the shadows.

Many Cambodian Buddhists (making up over 90% of the population) believe that they have a responsibility to care for and support people in need in their society, but this is tempered with the belief that disability is the result of a personal failing, either in this life or a past one. Disability is not value neutral in Cambodia, and this makes it extremely difficult to address disability issues there. Discrimination is widespread at multiple levels of Cambodian society, and this contributes to hardships for people with disabilities.

In a country where life expectancy hovers around age 52 and the adult literacy rates for men and women are remarkably skewed (60% for men, around 20% for women), people with disabilities in Cambodia are in an especially unenviable situation. Many live in extreme poverty and have difficulty accessing services because of poor infrastructure. Things like accessibility are hard to find, let alone antidiscrimination campaigns.

Prime Minister Hun Sen, who has a visual impairment, has spoken out about discrimination against people with disabilities in Cambodia, saying:

“Stop such words like, ‘you, blind,’ or ‘no-legged man,’ because it hurts. When I hear these words, I hurt, because I’m also a disabled person.¹“

“If you see someone who is blind, crippled, or has amputations, please don’t talk about them based on their appearance.²“

According to statistics from the Cambodian government³, almost a fifth of the people with disabilities in Cambodia have amputations (Cambodia may have the highest percentage of amputees in the population in the world), 10% of disabled persons in Cambodia have visual impairments, and five percent are Deaf or hard of hearing. Other reporting categories include “permanent disfigurement” (10.9%), “others,” (16.9%), and “physical impairment (one or more limbs)” (22.1%).

One fifth of the people with disabilities in Cambodia are children. The vast majority of disabled Cambodians live in rural areas, in part because Cambodia’s population is primarily concentrated in rural areas, but also because Cambodia has a land mine problem.

A big one.

The land mine problem is perhaps most exemplified by looking at statistics on the number of amputees in Cambodia. Estimates suggest that between one in 230 and one in 300 Cambodians has one or more amputations. These amputations are primarily the consequence of encounters with land mines.

Almost half of Cambodia’s rural villages are mined. And it’s not just mines; Cambodia’s countryside is littered with unexploded ordinance and other hazards left over from decades of military conflict. People must farm to live, and this means that they must expose themselves on a regular basis to the danger of land mines.

Writing about his life, a landmine survivor wrote:

Forget about the possibility of heavy labor to earn a living like field or factory work, just to walk, or lie down to sleep or go to the bathroom is difficult or impossible for me, so how could I earn a living: there is no money to start up a business or no relatives to depend on for support. No way.⁴

It’s easy to read about things like this and go “well, this is awful, but what can I do?”

The answer is: A lot, actually.

Organizations in Cambodia advocating for people with disabilities include the Cambodian Disabled People’s Organisation, the Association of the Blind in Cambodia, the Cambodian War Amputees Rehabilitation Society, the National Centre of Disabled Persons, and Demine Cambodia. Non-Cambodian organizations include Action on Disability and Development and the World Rehabilitation Fund’s PACE Project.

These organizations are all focusing on empowering Cambodians with disabilities and on addressing social attitudes which contribute to the stigmatization of disability. Rather than just delivering aid, they are working to help disabled Cambodians help themselves. For example, MAG Cambodia isn’t simply demining Cambodia, it’s training amputees to disable and remove mines. These programs are thinking about long term changes which will improve conditions for people with disabilities in Cambodia.

If you don’t have money to donate, that’s ok. Many of these organizations could benefit from advocacy and awareness raising campaigns. If you’re a blogger, perhaps you’d consider profiling one of these organizations, or linking to posts like this at FWD which talk about efforts to address disability issues in the developing world? If you know people who are looking for charities to donate to, why not suggest one of these, stressing the idea that we should be contributing to organizations which promote autonomy and empowerment? And, if you have the energies to do so, please consider writing your representatives and foreign aid agencies to suggest that foreign aid be directed at organizations like these.

Cambodia isn’t the only country with a landmine/unexploded ordinance problem. Laos, Angola, Somalia, and Vietnam, among many others, have dangerous legacies as well. As time goes on, unexploded ordinance becomes increasingly unstable and more difficult to locate; two pronged efforts which focus on removing landmines, bombs, and other unexploded ordinance while also promoting the welfare of people with disabilities are critical.

It’s also worth pondering how these nations have ended up with a mine problem in the first place. The combatants in these conflicts had to get their mines from somewhere. In the case of Cambodia, these mines came from all over the world, including the former Soviet Union, the United States, China, India, Chile, and Hungary, among many others⁵. Numerous nations have a long history of being involved in arms dealing with little care as to where those arms end up and how they are used. Another important act of activism can be pressuring for more responsible handling and policy in regards to weapons sales.

Stop Arms to Sudan is just one example of the many organizations working to address the issue of global arms dealing. Control Arms Campaign, the Campaign Against Arms Trade, and the Coalition to Oppose the Arms Trade are others. Putting tighter controls on the global arms trade will help prevent genocide, acts of brutality, and landmine problems like those seen in Cambodia.

This is not an abstract or historical issue. As I write, for example, the United States is shipping arms for distribution in places like Iraq and Afghanistan. The United States is not the only country to engage in this activity; not that long ago, US military strategists were condemning Britain for doing the same thing.

Pich Samnang, VOA News, “Hun Sen Speaks Up for Disabled,” 2009. ↩
People Living With Disabilities in Cambodia, “Prime Minister appeals to Cambodians to Respect Disabled,” 2008. ↩
(PDF) Japan International Cooperation Agency Planning and Evaluation Development, “Country Profile on Disability, Kingdom of Cambodia,” (2002) ↩
Hay Loeuth, “Letter From a Khmer Amputee.” ↩
Cambodia: Beauty and Darkness. “Landmines in Cambodia.” ↩

Posted in policy, poverty, social attitudes | Tagged amputees, cambodia, development, landmines, war injuries | Leave a response

Evelyn Evelyn: Ableism Ableism?

By Annaham on 9 February, 2010

Let’s get something out of the way: I say this out of love and respect. I say this as a fellow artist (albeit an unknown one). I also very much doubt that the people involved in this project have created it with any bad intentions. That said, however, intentions don’t equal a free pass for an end result, particularly if the end result is problematic.

I am conflicted, to put it mildly, about this latest project in which singer and pianist Amanda Palmer has involved herself (full disclosure: I am a fan of Palmer’s music). For those who need a refresher, she and fellow musician Jason Webley are performing together as Evelyn Evelyn, a fictional set of conjoined twins and former circus performers with an elaborate past who reside in (of course!) Walla Walla, Washington. The group’s upcoming self-titled album seems to be getting quite a bit of press in the indie world. Part of the press release reads as follows:

Rather than being limited by their unique physical condition, the Evelyn sisters prove that two heads are indeed better than one. Audiences will marvel at the twins as they dexterously perform their original compositions on piano, guitar, ukulele, accordion and even drums.

Ah, yes! It’s the “overcoming disability” trope, with a heaping side of totally unexpected and not-at-all-stereotypical circus-freakdom. Might Evelyn Evelyn be musical Supercrips?

And then:

Unsatisfied with the grind of circus life, at the age of nineteen the twins decided to explore a solo career. It was then that they were discovered by Amanda Palmer and Jason Webley, who heard the twins’ music on MySpace. Webley and Palmer encouraged the twins and offered to help them record a proper album.

The album will be accompanied by a full US and European tour and – later this year – a graphic novel about the twins’ inspiring life, illustrated by Cynthia von Buhler and published by Dark Horse Press.

The stereotypes about disability here are pretty well-worn: according to this (fictional) backstory, the twins were “discovered by” and need “help” from two abled individuals, Palmer and Webley, to realize their musical potential. Add to this their “inspiring” origin story — which is fodder for a graphic novel tie-in — and you’ve got yourself one hell of a three-ring circus of disability stereotypes.

Thus far, it looks like Evelyn Evelyn’s primary aim is to be “inspiring” to abled folks (and to be a bit of creative fun for Palmer and Webley). The three songs currently available on MySpace only serve to continue this trope; “A Campaign of Shock and Awe,” in particular, casts the twins as “the 8th wonder of the natural world.” Good to know that even fictional people with disabilities are not exempt from being cast as “wonders” from which non-disabled people can draw inspiration and “marvel” at. Sound familiar? Add in a dash of hipster ableism and you’ve got something that looks positively transgressive, especially in comparison to the rest of the music industry.

Unfortunately, Evelyn Evelyn seems like a project that is far from actually being transgressive, even given the initial appearance of said transgression (because what’s more shocking and weird than conjoined twins, at least according to abled culture?). The project, as far as I can tell, makes no reference to the ways in which actual people with disabilities are treated in Western culture; this probably seems like a tall order for any musical project, but there is a chasm of difference between at least acknowledging that there are people like this (in this case, conjoined twins) who do exist and that they probably are affected by ableism, and outright appropriation of this uniqueness in the name of art. Certainly, Evelyn Evelyn is fictional, and while Palmer and Webley are not required to make any sort of political statement, the seeming lack of awareness that there are actual conjoined twins and that they do not only exist for abled artists’ dressing-up-and-performing purposes is rather troubling.

The larger cultural context of treatment of real people with disabilities, too, is conveniently forgotten (see the lyrics to “A Campaign of Shock and Awe”); the twins seem to exist in a world that is completely free of ableism (in forms subtle and not), harsh social treatment of PWDs by abled people, and pernicious, damaging stereotypes. This is particularly disappointing given that Palmer has written some great, quite un-stereotypical songs about PWDs and people with mental health conditions (one of which I wrote about in a blog post for Bitch Magazine).

I am a person with disabilities. I am a music fan. I am (sort of) an artist — one who mostly does graphic work about the disabilities of non-fictional people. However, Evelyn Evelyn, as a multimedia project, seems designed to keep people like me — real people with disabilities — out; this is not a new thing, considering the attitudes that folks in our culture hold about people with disabilities and their acceptable social roles. There are other, more creative ways to portray people with disabilities that don’t rely on facile stereotypes or on the ways that PWDs are already represented in popular culture. Representing Evelyn Evelyn as variously inspiring, freakish, weird and a “wonder” just reinforces existing stereotypes about PWDs, while ignoring the cultural context in which the project was conceived; while Evelyn Evelyn may be artistic and, at first glance, “different,” the attitudes beneath the project’s surface seem awfully mainstream.

Special commenting note: First-time commenters, please read and abide by our comments policy. Kindly refrain from commenting if your argument consists of any of the following: “You just don’t get it,” “You do not understand art,” “You are taking this too seriously,” “Evelyn Evelyn is not real, therefore the stereotypes about disability examined here do not matter,” “Justify your experience and/or disability to me, NOW,” “Why are you criticizing Amanda Palmer? She is brilliant; how dare you!” I am familiar with all of these arguments — please be aware that they will probably not add anything to the discussion because they are classic derailing tactics, and I will most likely decline to publish comments that utilize the above arguments.

Similarly, this is not a thread in which to discuss how much you like or dislike Palmer or Webley’s music in general; comments to the effect of “Her/his music sucks and here’s why” will not be allowed, as they are also derailing.

Posted in bodies, creative work, language, media and pop culture, normality, othering, representations, social attitudes | Tagged characters with disabilities, culture, dehumanisation, disability, fetishizing disability, language, media and pop culture, myths and misconceptions, pop culture, privilege, social treatment, this all sounds awfully familiar | 7 Responses

Question Time: Odd Questions

By Chally on 8 February, 2010

Question Time is a series in which we open up the floor to you, commenters. We invite you to share as you feel comfortable.

What are some really odd questions you’ve been asked about being disabled?¹

This could be… interesting. ↩

Posted in Question Time | 5 Responses

Newsflash: Poverty is Bad for Your Health

By abby jean on 8 February, 2010

A recent study from Columbia University found that of all the health factors they measured, poverty had the greatest negative impact on health. The other factors they looked at included smoking, obesity, lack of health insurance, and binge drinking, all of which had a less significant impact on health outcomes than living in poverty. Poverty, defined as living below 200% of the United Stated Federal Poverty Level, was determined to take away 8.2 years of health, meaning poor people have 8.2 fewer years in which they are healthy than someone above 200% of the FPL (This is a standard measure of health burden, used by the WHO.) We should also be explicit that when we talk about poverty we talk about race – over 50% of black and Latino young adults live in poverty, compared to less than 30% of white young adults.

To which I respond, well, YES, clearly. But you would never know these things from the way we talk about health. Think about how many public health programs are focused directly on the spectre of obesity. There’s PE programs and school activity policies, public education campaigns (usually involving TV ads) to tell people to spend less time watching TV, there’s calorie labeling requirements and scolding people to go to their farmer’s markets and taxes on soda or foods with trans fat. Some of those policies may have worth, but their goal of eliminating TEH FAT ZOMG and thereby solving the health crisis is clearly misdirected. Even worse are the articles and attitudes engendered by this focus on obesity as a health issue, like this recent article in the LA Times, because they imply that a systemic issue like the health care problem can be resolved by individuals changing their lifestyles, rather than by systemic change on a much broader level.

The effect of poverty on health has been clearly documented. People who live in poverty are more likely to have asthma and diabetes. They’re way more likely to be exposed to parasites like toxocariasis, cysticercosis, and toxoplasmosis, which can have significant physical and neurological effects including seizures and developmental delays. They’re five times more likely to be exposed to lead paint as children. They’re twice as likely to have untreated cavities, which can lead to heart disease or infection and even death. This all means that from the beginning, even from birth, people living in poverty are more likely to develop or acquire a disability or chronic health condition.

It would seem, then, that addressing poverty in order to prevent those negative health outcomes would be a public health priority. But it really isn’t – poverty programs are rarely described as health programs. When a politician starts talking about welfare, they’re talking about cash payments to help parents raise their kids, to preserve and support families. They don’t talk about how assisting a family out of poverty will make that whole family healthier, and less in need of health care. And addressing the negative health effects of poverty – safely removing all the lead paint, preventing slum housing conditions like cockroach infestations and mold that contribute to asthma, get them some access to dental care – would have an enormously beneficial effect on hundreds of thousands of individuals and on the health care system as a whole. However, addressing the systemic effects of poverty isn’t nearly as easy as shaming “the fatties” and slapping some calorie numbers on menus.

This is especially galling because there is so much overlap between the community of PWDs and people in poverty. A recent study found that almost half of working-age adults who experience poverty for at least a 12-month period have one or more disabilities. People with disabilities account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents. Families with more than one member with a disability are even more likely to be living in poverty. There are two things going on here. First, people who live in poverty are more likely to be or become PWDs, partly because of the health factors discussed above. But also, PWDs are more likely to live in poverty, partly because of the cost of health care.

All of this suggests that our conversations about health care need to include ideas about addressing poverty and that our work on poverty issues has special effects on health and disability. Hurrah for intersectionality!

Posted in class issues, disability activism, intersectionality, policy, politics, poverty, race | 3 Responses

Ask Me No Questions and I’ll Tell You No Lies

By meloukhia on 7 February, 2010

In “How Do I Say ‘My Brain Is Not Like Yours’?” I discussed a lot of the frustrations I experience as a neuroatypical when I’m in social situations and attempting to navigate human interactions. Nowhere is this more difficult to me than in settings which people regard as “casual” and “low stress,” because these are the settings in which the rules I have carefully established through trial and error seem to break down, despite my best intentions.

I am speaking, here, of questions. Because, here’s the thing.

When you ask me a question, I assume that you are asking me a question because you would like to hear the answer. Thus, I am going to respond. And I am going to respond honestly, because I don’t have the social filter in my brain which tells me what is and is not appropriate; I take questions at face value. And sometimes, this turns very, very ugly.

Example:

“What you do think of the pie?”

“I think it tastes like shit. This is one of the most awful pies I have ever had. The crust tastes like cardboard sopped with simple syrup and the filling tastes like pureed ass.”

“Oh.” [tears]

Example:

“How are you?”

“I feel like crap. This whole day is turning to shit, I think I am getting a migraine, and the fucking cat pissed on the floor again.”

“Oh.” [look of extreme boredom]

Questions terrify me. Because every time a question gets asked, I have to rifle through my mental notes. I have to think about other settings in which the question has been asked, responses which were greeted approvingly, responses which were not greeted approvingly, and I have to ask myself “is this person asking because they really want to know?” Which seems utterly alien to me, because, like, why would you ask a question if you didn’t want to know the answer?

For me, I only ask a question like “how are you” when I really want to hear the answer. If I don’t want to know, I don’t ask. (And thus, I also get confused and upset when people share information I didn’t ask for, and, hello, awkwardness.)

By extension, small talk also terrifies me, because I don’t know what kinds of topics are acceptable and which are not, and I am constantly crossing invisible lines which I don’t see until I trip on them and fall down. I am constantly fouling up in social interactions. When I was a child, it got me labeled as “rude” and “wild” and now that I’m an adult I’m “rude” and “blunt.” All because I interact with people in the way in which I want to be interacted with, clearly, all cards laid out on the table, all parameters clearly established. I fear human interaction on a deep level if it’s anything beyond an interaction with clear, easily negotiable boundaries.

Like with my accountant. I can say “hello Accountant, I hope things are going well for you at the moment, I need my taxes done now, here is the paperwork.” Or, at the feed store, when I pick up the cat food, I know enough to say “It’s a lovely day isn’t it?” or “I hope this rain lets up a bit.” once my credit card has been swiped and we are standing around waiting for the transaction to clear. When I worked in retail, I could follow the formula, the “I hope you found everything you wanted, would you like a bag, $32.16 please, sign here, have a nice day” rota. I understand how to navigate professional transactions and interactions because I’ve gone through them literally hundreds of times, and I know the formula. You want to throw me off? Introduce something unfamiliar to the formula. Introduce a question which is not related to the business which we are transacting. Introduce the X Factor, and watch me fall apart.

For me, social interactions are a minefield. I have no idea which step will be my last.

Posted in i'm right here, identity, shaming, social attitudes | 3 Responses

What is the Real Goal of Fraud Investigations?

By abby jean on 6 February, 2010

California is in the midst of a major budget crisis. The past year has seen immense and drastic cuts to social service budgets throughout the state, including elimination of all state funding ($16 million) to domestic violence shelters (which was later partially restored by legislative action) and near-total decimation of funds for AIDS testing and prevention programs to save $52 million. Even with those catastrophic cuts, the state is still in massive financial difficulty: “The state has a $6.6 billion shortfall in the current fiscal year ending June 30 and is looking at a $12.3 billion hole for the new budget year. There is $1 million in reserve.”

This means that any dollar currently being spent has been extensively reviewed and evaluated and a very conscious decision has been made to prioritize spending in that area. For example, the state is still willing to spend money for California counties to investigate potential fraud in the In-Home Supportive Services (IHSS) program. IHSS is an essential program for many of California’s low-income elderly people and people with disabilities. Through the program, individuals are allotted a certain number of hours of assistance with personal services including bathing and grooming, home services such as cleaning, cooking, and errands including buying groceries and picking up prescriptions. The theory of the program is that assisting people this way allows them to continue living independently in their communities rather than in a long-term care facility, which not only preserves independence and dignity for program recipients, but also is a huge cost-savings measure for the state. If program recipients were to move to long-term care facilities, their costs would almost certainly be paid for by the state’s Medicaid program. And look at the cost differential: “The average cost of a skilled nursing facility is $55,000 a year. The average cost of in-home services in California is $10,000.”

Despite the cost savings realized by this program (I’m beyond the point where I think a state will prioritize and fund a program simply because it’s something that PWDs need to maintain independence and dignity), there have been massive cuts to the benefits portions of IHSS. The hourly wage paid to the home health providers has steadily declined and is now at $8.60 an hour. Needless to say, these extremely low wages make it nearly impossible for a PWD with IHSS benefits to find a home care provider with any kind of training or experience. There have also been steady erosions to the group of individuals who will be eligible for IHSS, with criteria requiring a higher and higher level of disability or functional impairment in order to qualify for the program.

The only area of program funding that has increased is fraud detection, with a grant of $26.5 million to counties to engage in fraud detection. That’s the equivalent of approximately 3 million service hours at the current rate of pay. There are also new requirements in the program that must be met by both recipients and providers in order to receive services: all providers must go through a criminal background check process, including fingerprinting; all program applicants and recipients must be fingerprinted and must place a fingerprint signature on each timesheet submitted for payment. It also requires counties to conduct unannounced home visits.

In the abstract, some of this seems to make sense. We don’t want health providers with criminal backgrounds coming into the homes of vulnerable people and exploiting or harming them. Except that the majority of providers are actually family members or immediate relatives of the PWD and the fingerprints can take up to 9-12 months to be cleared by the state, causing huge delays for PWDs who need vital services and delays in bringing often essential income to low-income families. (Not to mention how low-income people of color are likely disproportionately targeted by law enforcement and subject to criminal penalties.) It also seems reasonable to ensure that scarce service dollars are actually going to people who need and deserve them, rather than people receiving them fraudulently. But there has been a lot of research on IHSS fraud in the past, and it simply does not seem to be very prevalent: an audit released last year (pdf link) found a fraud rate of only 1% in the program. A recent program in Sacramento turned up similarly low levels of program fraud: “The Sacramento County District Attorney, who received more than $3 million from the state for anti-fraud efforts, reported last week that after four months her office had uncovered a total of 19 cases of fraud out of more than 42,000 homecare clients in the County.” That’s a rate of 0.04%. And if we estimate that each of those 19 cases fradulently took $10,000 a year from the state, that $190,000 in fraudulent benefits is dwarfed by the $3 million spent to identify that fraud.

So – these changes and programs are not about protecting recipients. They’re not about preventing widespread rampant fraud. What are they about? Some testimony at a recent legislative hearing sheds some light:

Nancy Jo Riley of San Diego testified that she and her client were “randomly selected” for a fraud investigation last October as part of a new “anti-fraud” initiative by the state. According to Ms. Riley, the agent from the Department of Health Care Services (DCHS) first threatened in a phone call to cut off all IHSS unless she and her client met with him immediately. At the subsequent meeting, the investigator asked her and her client a long series of “humiliating” questions. He then said he could not understand why a person with a severe disability like his should be subject to a fraud investigation in the first place. He also said that her client, whose hands are frozen in a fist-like position because of his disability, would “probably” be exempted from new fingerprint requirements for homecare consumers.

These rules are an effort to make it harder for people to get services or to continue receiving services. They are an effort to erect barriers to service so substantial that PWDs cannot surmount them. They designed to humiliate and shame recipients for their disability status, to force them to prove themselves, their disabilities, and their functional impairments over and over again. They don’t even make sense from a cost perspective, as they spend far more in detection than is saved by the fraud they ostensibly prevent. They’re not targeting people who are fraudulently receiving services. They are targeting the very people the program is supposed to help.

Posted in accessibility, blaming, class issues, intersectionality, politics, shaming, social attitudes | Tagged government benefits | 7 Responses

Chatterday! Open Thread.

By lauredhel on 5 February, 2010

transparent-skinned frog, hanging from a twig. The frog's internal organs are visible This is our weekly Chatterday! open thread. Use this open thread to talk amongst yourselves: feel free to share a link, have a vent, or spread some joy.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world? Feel free to add your own images. (Anna insists that these should only be of ponies, but I insist that very small primates, camelids, critters from the weasel family, smooching giraffes, and cupcakes are also acceptable.) Just whack in a bare link to a webpage, please – admin needs to deal with the HTML code side of things.

Today’s chatterday backcloth, a endangered transparent-skinned “glass frog” from the South American rainforest, comes from National Geographic, via Neatorama.

Posted in chatterday | 17 Responses

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FWD/Forward

FWD (feminists with disabilities) for a way forward

Recommended Reading for February 10th

Question Time: Odd Questions

Newsflash: Poverty is Bad for Your Health

Recommended Reading for February 9th

Recommended Reading for February 8th

Chatterday! Open Thread.

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