All posts by abby jean

I Can’t Handle Celebrity Suicides

introspective, media and pop culture, mental health

There’s been a couple of recent high-profile celebrity suicides.  Earlier this month, celebrated fashion designed Alexander McQueen hanged himself in his London home at the age of 40. Then this week, actor Andrew Koenig was found dead from suicide in Vancouver after being missing for several days.  These are just the most recent – there’s also David Foster Wallace, Spaulding Gray, Kurt Cobain, Ian Curtis, back to Diane Arbus, Anne Sexton, Sylvia Plath.

Of course, there are a lot of people who commit suicide who don’t make international headlines and don’t get websites doing slideshow retrospectives of their careers and bodies of work. But I don’t always know about those – it’s only the celebrities or the dramatic suicides (burning down a house while inside it to avoid foreclosure, for example) that come to my attention through the media. And every single time it happens, it stops me in my tracks.

These events remind me that the monster of depression can always get you. No matter how creative and inspired you are. No matter how much admiration and respect you earn from the fashion industry, the music industry, the world at large. No matter how privileged and rich you are. No matter how well known your struggles with depression are, no matter how many friends and strangers love and support you, no matter ho many people feel your loss. No matter how many years you’ve spent running from the monster. It can always catch you. It can always kill you. You are never and can never be safe.

I follow the twitters and blogs of a lot of alternative comedy people and the past week has been filled with concern about Koenig’s disappearance and ferverent please for help in finding him and making sure he was ok. This is even more notable from the comedy crowd who tweet only silly and humorous things and have essentially broken character to express their concern and love for Koenig. While I realize I can’t tell whether Koenig had actual love and support in his life just from reading a tweet from Doug Benson, I can see that there was a network of people who were really worried about him and who seem deeply affected by his loss.

If I committed suicide, it wouldn’t make any headlines. I’ve done a lot of work of which I’m very proud, but it wouldn’t be reviewed and featured on the Huffington Post. And certainly a generation of people wouldn’t have vivid memories of where they were when they heard about my death, as exists for Cobain. (I was in a car with my dad on Folsom Ave. in Boulder, C0lorado, driving south, when I heard it announced on the radio.) So the fact that the monster overtook these celebrities makes me feel even more vulnerable to succumbing.

Everything they did, everything they had, it didn’t help them. Couldn’t save them. What chance do I have?

Shame and Blame with African-Americans and Mental Health: Let the Circle Be Unbroken

blaming, class issues, intersectionality, justice, mental health, race

Recently, U.S. Surgeon General Dr. Regina Benjamin kicked off a national campaign to tackle mental health in the African-American community. Benjamin explained why a focus on African-Americans is needed: “Mental health problems are particularly widespread in the African-American community. In 2004, nearly 12 percent of African Americans ages 18-25 reported serious psychological distress in the past year. Overall, only one-third of Americans with a mental illness or a mental health problem receive care and the percentage of African Americans receiving services (nearly 7 percent) is half that of non-Hispanic whites.”

Programs focusing on addressing underrepresentation of minority groups in mental health care tend to focus on outreach to and education of the underrepresented group (while this post focuses on historical and structural barriers to African-American participation in the mental health system, these larger concepts are likely applicable to other racial and cultural minorities throughout the world.). The theory seems to be that if individuals knew that they might be experiencing mental health systems and understood how the mental health system could treat and benefit them, they’d start accessing it in droves. This kind of outreach and education is clearly an important part of increasing minority representation in mental health care, but the exclusive focus implies that the primary barriers are the attitudes of individuals who would change their minds if they just had more information. This ignores a lot of problems and lets a lot of bad actors off the hook for institutional barriers and exclusions. In the particular instance of African-American engagement in the mental health system, it is these long-standing oppressions and exclusions which are perhaps most to blame.

A primary issue is that African-Americans are more likely to be subject to a number of forces of oppression and discrimination which can increase trauma and vulnerability to mental health disorders. “Owing to a long history of oppression and the cumulative impact of economic hardship, African Americans are significantly overrepresented in the most vulnerable segments of the population. More African Americans than whites or members of other racial and ethnic minority groups are homeless, incarcerated, or are children in foster care or otherwise supervised by the child welfare system. Proportionally, 3.5 times as many African Americans as white Americans are homeless. African Americans are especially likely to be exposed to violence-related trauma, as were the large number of African American soldiers assigned to war zones in Vietnam. Exposure to trauma leads to increased vulnerability to mental disorders.”

To me, that does not suggest that the primary solution is increasing African-American representation in mental health treatment – it suggests that a primary solution would be to address the structural inequalities that are making African-Americans “significantly overrepresented in the most vulnerable segments of the population.” Maybe a program that focuses on homelessness in the African-American population. Maybe addressing the sentencing disparities for crimes involving cocaine and crack cocaine, and how that contributes to disproportionate and longer incarceration of African-Americans. Or how felony disenfranchisement prevents a staggering number of African-Americans (13% of black adult males!) from participating in our democratic political system. Without addressing these ongoing problems, a disproportionate number of African-Americans will continue to experience trauma and increased vulnerability to mental disorders.

A second and key issue is the long history of how the psychiatric profession has treated African-Americans in the United States. Diagnoses and treatments for African-Americans have long been rooted in the structural racism of slavery, with early diagnoses of “Negritude” and “Drapetomia” for slaves who fled their masters and recommended treatment of whipping as therapeutic intervention. In 1895, a Georgia psychiatrist popularized the idea that “structured lives led by slaves served as protective factors against insanity” and that slavery protected African-Americans from freedom that would literally make them insane. In the late 1800s and early 1900s, there were separate “colored” institutions for African-Americans, who received little if any treatment services and were subject to horrific tortures and sexual assaults.

A glance at the current mental health system makes it clear those historical problems have not been eradicated. African-Americans are much more likely to be diagnosed with schizophrenia than with affective (mood) disorders, even when displaying the exact symptoms of a white patient diagnosed with affective disorder. This is true even when the diagnosing clinicians included African-Americans well trained about the bias towards schizophrenia diagnoses. Studies suggest this is because clinicians apply entirely separate decision models when diagnosing African-American patients, likely drawing on stereotypes of paranoia and violence that aren’t actually associated either with African-Americans or people with schizophrenia.

There are also significant knowledge gaps in how psychoactive medications affect African-Americans. There is almost no research on ensuring adequate racial representation in psychopharmalogical research, nor on how to ensure that participating patients from various cultural and racial groups give informed consent. This lack of knowledge is affecting the effectiveness of treatment, as existing research shows that “a greater percentage of African Americans than whites metabolize some antidepressants and antipsychotic medications slowly and might be more sensitive than whites,” and can lead to faster responses and more severe side effects when African-Americans are treated with doses commonly used for whites. Despite this, clinicians in psychiatric emergency services commonly administer “both more and higher doses of oral and injectable antipsychotic medications to African Americans than to whites.”

To me, all of this suggests that the psychiatric profession hasn’t really figured out how to provide psychiatric treatment and care of the African-American population with the African-American individual’s best interests in mind. History speaks to using psychiatry to control, torture, sedate, and oppress African-Americans, even creating fictionalized diagnoses to help support the structures of slavery. Add to all of this the multiple barriers preventing access to mental health care even for those who enthusiastically wish to access it – lack of parity for mental health care, lack of health care coverage at all, societal sigma around mental health – and instead of wondering why there’s underrepresentation of African-Americans in the mental health system, I start wondering why there’s as many as there are.

Clearly, a solution focused only on outreach and education to individual African-Americans is doomed to be unsuccessful, because it overlooks the underlying structural issues making African-Americans particularly vulnerable to mental health problems and the historical reality of their exploitation by the mental health system. Even more troubling, though, is that when the access problem is framed as an issue of education to an individual, it allows the blame to be placed squarely on that individual – even if these other, more serious, structural barriers are ignored. That kind of blame is just another addition to the complex system of forces making African-Americans more vulnerable to mental disorders to begin with.

It’s Hard to Know What to Say

identity, introspective, language, meta

Sometimes I have a hard time thinking of anything to say here. In large part because it still feels, to me, that writing anything here is an act of such unimaginable daring that I should immediately take down everything I’ve already posted and get to work scrubbing cached files of any mention of my name.

I’ve noticed that it’s very difficult for me to talk about my actual experiences with disability here. The things I’ve felt, the things that posed obstacles. It’s a lot easier for me to talk about disability issues that could potentially apply to me, but which I’m not currently experiencing. The difficulties I would have were I forced to get care and treatment through government health programs in the US. The near total lack of options and assistance that would be available to me in places like Rwanda or Cambodia. But not the problems that I’m dealing with right now. Not the way stigma is affecting me this week.

Both of those kinds of writing are deeply rooted in my own experiences with disability. When I think about policy problems, I always imagine how I would be treated, how my symptoms and impairments would have prevented me from accessing the benefit in question. But when I talk about the policy, I can highlight those issues and problems (sometimes a person with depression can miss a scheduled appointment for disability-related reasons) without having to share the personal details behind it (the time I missed a class that was being held literally 20 feet away because I could not get out of bed during the midst of a major depressive episode).

I don’t trust the general discourse enough to feel safe putting my stories out there (specifically, the people who can Google, the commenters who don’t get through mod, the Tumblr reblogs). Enough of the world can still use these things as weapons that I do not want to give them any ammunition. This position is one I’ve come to through direct experience of people I’ve respected and trusted throwing things back in my face. And not just friends – I’ve had specific professional repercussions directly related to my disability status. Again, sharing more details about that would make it a more relevant and compelling story, but it would also exponentially increase my potential vulnerability to increased or future problems of the same nature.

So why is it my responsibility, as the already vulnerable person, as the PWD, to expose myself further, to hand people the tools they will then use to attack me? Is the value that PWDs add to discourse solely in sharing the intimate details of their hopes and fears, their catastrophes and failures? Is discussion based on but not including personal details inherently less powerful?

I feel like I’ve taken a major step identifying as a PWD. I am unwilling to empty myself in front of people in order to convince them to care.

How Stigma Undermines Good Policies

Uncategorized

There is sometimes significant pushback to talking about negative attitudes towards disabilities and PWDs. Those discussion are sometimes criticized for being too abstract, too removed from any practical effects on actual people. Sometimes people suggest that we focus instead on concrete policies and procedures that protect the rights of PWDs, so that tricky decisions aren’t left up to people who may act based on stigma.

As a policy wonk, though, I know that the best policy is only as good as its implementation. And if policy implementation and enforcement is in the hands of people with negative or uninformed attitudes towards PWDs, even amazing, sensitive, and nuanced policies will still lead to awful and horrific results.

For an easy example, imagine a company with a policy that required that  all newly hired employees be informed about their right to workplace accommodations for mental or physical disabilities.  The company works with disability rights groups to create a pamphlet outlining who is eligible for accommodations, what potential accommodations may be available, and the procedure for requesting accommodations and documenting a need for them. The disability rights groups make sure all the information is correct, that the pamphlet is available in alternative formats so it’s accessible, and that it emphasizes that accommodations are an employee’s right, rather than a bonus provided by the company. It is, in short, the perfect pamphlet.

Now imagine how much depends on the person who hands that pamphlet to the new employee. Take one scenario: the employee goes through a complete orientation and then is asked to wait in the lobby. When the employee asks why, the receptionist sighs “oh, it’s some stupid thing required by company policy. Just wait.” After 15 minutes, the designated human resources staffer comes out and thrusts the pamphlet at the employee, saying “Here, take this. It’s something I have to give you for policy. You have to sign here to show that I gave it to you.” When the employee asks what the pamphlet is about, the staffer replies “Oh something we have to do for disability, or whatever. Nobody is ever stupid enough to ask for any of these things, believe me.”

Compare that situation to one in which the employee sits with a single staffer to review all the new employee paperwork. At the end, the staffer says “There’s one more policy to review, and this one is especially important to our company. We place a high priority on accommodating employees with disabilities. Even if you don’t identify as someone with a disability, I want to review this with you so you can see how we ensure that employees with disabilities are equal players in our team. You might notice some employees with special equipment or who seem to have different schedules or other differences. This explains why we’ve provided these accommodations and why they’re not ‘special,’ but are important requirements for us to make sure that we accommodate and retain employees with disabilities.”

Exact same policy. Drastically different implementation that will certainly lead to drastically different effects on the individual employee in terms of willingness to identify as a PWD, request necessary accommodations, and their expectation of how the company will work with them on accommodation issues. I’d imagine that an employee in the first scenario might not ever request an accommodation for fear of being seen as a trouble-maker or someone trying to get “special rights,” or might have to go to a government agency or private attorney to actually enforce accommodation rights.

And those are the problems that can arise when attitudes and stigma complicate implementation of the actual policy as written – in both those examples, the new employee was actually given the pamphlet as part of the hiring process. What’s more troubling is when attitudes and assumptions lead to the policy not being implemented at all. There was a recent example of this with the United States Transportation Security Administration (TSA). As has been discussed extensively on this site and elsewhere, security theatre has resulted in implementation of all kinds of intrusive and extensive checks and searches of people flying commercial airlines. This is what happened last year in Philadelphia:

Ryan was taking his first flight, to Walt Disney World, for his fourth birthday. The boy is developmentally delayed, one of the effects of being born 16 weeks prematurely. His ankles are malformed and his legs have low muscle tone. In March he was just starting to walk.

Mid-morning on March 19, his parents wheeled his stroller to the TSA security point, a couple of hours before their Southwest Airlines flight was to depart. The boy’s father broke down the stroller and put it on the conveyor belt as [his mother] walked Ryan through the metal detector.

The alarm went off. The screener told them to take off the boy’s braces. The [parents] were dumbfounded. “I told them he can’t walk without them on his own,” [his father] said. “He said, ‘He’ll need to take them off.’ ” Ryan’s mother offered to walk him through the detector after they removed the braces, which are custom-made of metal and hardened plastic. No, the screener replied. The boy had to walk on his own.

The TSA policy is extremely clear about how to screen PWDs who use mobility aids such as braces:

  • Security Officers will need to see and touch your prosthetic device, cast or support brace as part of the screening process.
  • Security Officers will not ask nor require you to remove your prosthetic device, cast, or support brace.
  • During the screening process, please do not remove or offer to remove your prosthetic device.
  • The Security Officer will describe the explosive trace sampling procedure in advance to help you along with the process.
  • The explosive trace sampling process may require you to lift or raise some of your clothing in order to obtain the explosive trace sample. (Sampling areas can be accessed by you lifting your pant leg or shirtsleeve or by raising your skirt to knee-level.)

In this case, the attitude of the individual employees staffing the TSA checkpoint in the airport clearly trumped the policy. The parents of the PWD had no choice to comply or not be allowed onto their plane. When they complained to the TSA supervisor on site, they were told to “calm down and enjoy [their] vacation.” There are a lot of negative attitudes and assumptions being displayed here: PWD are probably faking and don’t really need their mobility aids; the dignity of PWDs isn’t important and can be overridden for “security concerns,” and enforcing the rights of PWDs is just making an unreasonable fuss.

That’s why it’s important to fight against stigma. Because it matters.

Newsflash: Poverty is Bad for Your Health

class issues, disability activism, intersectionality, policy, politics, poverty, race

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!

What is the Real Goal of Fraud Investigations?

accessibility, blaming, class issues, intersectionality, politics, shaming, social attitudes

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.

The Opposite of “Disabled” is Not “Employable”

accessibility, blaming, language, Uncategorized,

According to the United State government, disability is “the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” Or, in non-regulatory terms, disability is when a physical or mental impairment will last at least a year and will make someone unable to work. The ability to work is right there in the definition. A person who cannot work is disabled. If that person can work, they are not disabled. Disability and employability are mutually exclusive states of being.

That definition comes from the Social Security Administration and is applied to people applying for disability benefits, basically a wage replacement program to compensate for the salary the person cannot earn – so the focus on employability makes some sense. But more and more, I see this framework for defining and evaluating disability applied outside the benefits context, in deciding if someone is “‘really’ disabled.” It’s also notable that these wage replacement programs are the most commonly known and discussed form of disability-based benefits – while I’m used to seeing articles about how to handle the Supplemental Security Insurance (SSI) program, I rarely see coverage of programs from the Department of Rehabilitations, which provides vocational training and support to PWDs. And the false equivalence of disability and unemployability is problematic for a lot of reasons.

  • There are a whole lot of people with disabilities who are not employed due to problems with the economy and with employers who discriminate against PWDs when hiring or fail to sufficient accommodate PWDs while employed. Assuming that unemployment is due solely to a person’s disability status, rather than systemic stigma and discrimination, places the responsibility for finding and keeping a job solely on the shoulders of the PWD. This shifts focus entirely away from the employers who have ultimate power over whether an individual is going to have a job. Take a look at employment statistics for the federal government itself, where “the severely disabled represent 0.94 percent of the government’s workforce.” And despite those low numbers, the government has no problem telling people that unemployment is a disability issue.
  • When disability is defined as an inability to work, that overlooks an enormous segment of people with disabilities. About 37% of PWDs in the United States are employed – 8,581,869 people. But their ability to work does not negate or erase their disabilities. Those disabilities continue to exist and implying they do not lets employers off the hook for acknowledging and accommodating those disabilities in the workplace. It is already easy for an employer to overlook an informal request for accommodation or demand overbroad access to private medical files to “prove” whether or not the requesting employee “actually” has a disability in response to an accommodation request. It’s impossible to say how many employed PWDs have successfully requested and received needed accommodations relative to those who have been too intimidated to ask or had employers unwilling to fulfill their legal obligation to provide accommodations. But I would venture to guess that it’s quite difficult and involves risk for the individual employee. The stereotype that people who can work are not disabled and do not “really” need or deserve accommodation only encourages this behavior.
  • In our society, employability is often equated with worth and value on a fundamental level. In the current bad economy, lots of people have been losing their jobs, and half of them feel that being unemployed has changed their lives for the worse. Being unemployed is seen as shameful, humiliating, a sort of failure to grow up and develop into a “real person.” Obviously, having “disabled” be seen as a synonym for something with those negative connotations does a disservice to people in both groups.

For Cereal, Cute Overload?

blaming, For Cereal?, language, media and pop culture, mental health, race, social attitudes

A periodic feature in which we highlight some of the more ableist posts and comments in the blogosphere – the things that made us throw up our hands and ask “FOR CEREAL???”

I’m late on this one, but that doesn’t make me any less upset. Cute Overload is one of the best and most regular suppliers of the cuteness I so often need to take the edge off the day, but it’s becoming increasingly problematic. They have a continuing series called Cats n Racks, featuring photos of kittens placed in cleavage, usually cutting off the woman’s head. Recently the site posted a picture of a extremely wrinkled puppy with lots of excess skin and compared it to Eleanor Roosevelt (described here at Filthy Grandeur). She also points out a recent photo of a wallaby titled “The New Slave Girl, She Intrigues Me,” captioned with what sounds an awful lot like a rape fantasy.

Not content to settle for racist and sexist, the site went for a hat trick and added ableist to their list! In their post reviewing the ten most popular posts of 2009, number five is a photo of a bunny with a long forelock brushed over one eye, called “Emo Bun.”

a small grey bunny looking to the side, with a long forelock of fur falling over one blue eye.

The text reads “On June 18, Stephanie N. took a minute from cutting herself to send us this awesome shot, an emotional bunneh.” The alt-text for the photo of the bunny reads “No Mom I was NOT cutting myself!”

FOR CEREAL, CUTE OVERLOAD? I’ve written at length about my issues with the term “emo” elsewhere, but beyond that, the multiple references to cutting are 100% non-negotiably inappropriate. Having an undeniably cute bunny whine about cutting minimizes and dismisses the very real pain of people who do self-injure. It implies that self-injury is a choice as superficial and changeable as a trendy hairstyle and that it’s done to fit into a trend. It’s not funny. And it’s certainly not cute.

Disability in Rwanda

global, intersectionality, poverty

Nobody knows how many people with disabilities there are in the world. In doing some basic research, I saw estimates ranging from 300 to 600 million. This is partly a definitional issue – it’s hard to get people to agree what “disabled” means – but mostly is because nobody has ever tried to figure it out. What is clear is that most people with disabilities live in poverty. According to the UN, two-thirds of people with moderate to severe disabilities live below the poverty line. Only two percent of people with disabilities in developing countries have access to basic services.

Take, for example, Rwanda, where poverty is both a cause and an effect of disability. It’s a gorgeous country and home to the rare mountain gorillas. It also had a massive genocide in 1994 during which an estimated 800,000 people were killed – an eighth of the population. Currently, organizations estimate that about 300,000 of the 10 million residents have disabilities. Nearly ten percent of the disabled population has had one or more limbs removed – either hacked off by machete or destroyed by mines, bombs, and bullets during the genocide. The genocide also caused resources like food to be diverted and scarce, resulting in malnutrition, which in turn has caused disability. Despite all that, the genocide is not the major cause of disability in the country – poverty, disease, accidents, lack of medical care and congenital causes are more common.

It’s also one of the poorest countries in Africa. “In 2006, 56.9% of the total population were living below the poverty line and 37.9% were extremely poor. In rural areas about 64.7% of the population were living in poverty… 28% of the rural population was food-insecure and 24% was highly vulnerable to food insecurity.” Poverty is more likely in households headed by females (which are more common after many men were killed during the genocide) and especially in households headed by individuals with HIV/AIDS.

Unfortunately, attitudes towards people with disabilities in Rwanda are not positive. From a report on disability policy in Rwanda:

‘Social exclusion’ is not a concept that is widely used in Rwanda, but disabled people are both actively and passively excluded in Rwandan society. Rwandans do not value disabled people. Disabled people are seen as objects of charity. They are underestimated and overprotected, and their potential and abilities are not recognised. Disabled children are seen as a source of shame and often hidden away. Name-calling is common. Disabled women find it difficult to get married. Disabled people suffer discrimination in employment.
Disabled family members are sometimes passed over in matters of inheritance. Land and assets are given to others who are deemed to be able to make better use of them, thus leaving the disabled person dependant on family to support them and removing the opportunity for them to lead independent lives. Negative attitudes are particularly strong towards those with severe disabilities, people with intellectual and learning disabilities, blind and deaf people.

Another organization reports that “disabled people are commonly addressed by their disability rather than their real name.”

Rwanda is making significant economic progress since the genocide, with yearly economic growth twice as high as what’s usually expected for a developing nation. It is described by Fortune Magazine as “a business-friendly nation that wants to become a model of private sector development in Africa.” The United Nations awarded Kigali, the capitol city, “the Habitat Scroll of Honour Award for many innovations in building a model, modern city symbolized by zero tolerance for plastics, improved garbage collection and a substantial reduction in crime.”

But it’s unlikely that this economic development will benefit Rwandans with disabilities. The country’s first Economic Development and Poverty Reduction Strategy Plan “had no specific reference to disability or how to include people with disabilities in the process.” While there has been significant foreign investment in the country, that impacts only the urban corporate portion of Rwanda. When nine of every ten adults are subsistence farmers in rural areas, those incoming dollars are extremely unlikely to reach the hands of most of the country’s inhabitants. The countryside isn’t appealing to private investment, especially when there’s no health stability. Any job development programs in rural areas are run by NGOs operating on donations and the products they create ($85 silk-mohair knitted scarves for Whitney Port from MTV!) are marketed based on pity for Rwandans. Those are not sustainable jobs or industries and will not create long term employment for those in rural areas. The most viable avenue for rural economic development has been through microloans through organizations such as Kiva.

Even these limited opportunities for work are unlikely to be available to people with disabilities. PWDs are unlikely to be awarded microloans to run their own businesses and are rarely employed by the NGO projects. As one research report observed:

Disabled people are generally excluded from development activities. They are often extremely poor and are continually in ‘survival mode’, so they literally cannot contribute to development activities, either materially or in terms of their time. They are largely excluded from micro-credit programmes because they lack assets as collateral and are seen as a bad risk. Disabled informants for this study said that they were often not told about development activities in their communities in the first place and when they tried to get involved, they were deliberately excluded.

It’s clear that colonization and ongoing meddling from the Western world has done nothing but contribute to and exacerbate problems like the genocide, so the solution isn’t to charge in there and tell Rwanda what policies it should have and how to run things. They were colonized by Belgium until 1960, for goodness sake. So I can’t say I know what the solution is, and the only advocacy action I can think to take is to encourage/pressure NGOs to be inclusive of PWDs when designing and implementing development projects. There’s a number of disability organizations in Rwanda and I think we’ll have to rely on them to do this work. Some lists of the organizations can be found in this report and in a project report from Handicap International.

Haiti

class issues, justice, medical practice, race, Uncategorized

As you’re likely aware, an immensely destructive earthquake struck Haiti on January 12, 2010. It was centered in the capital city Port-au-Prince, home to over 2 million residents, and destroyed buildings, food and water systems, hospitals, and seemingly the national government. The information and photos coming out of the country have been disturbing and heartbreaking. The full scope of the damage – to the people, to the country – has yet to be determined, but it is surely catastrophic.

The effect of the disaster on Haitians with disabilities is similarly devastating. Although the earthquake and subsequent building collapses happened so quickly that neither PWD nor TAB had an opportunity to get to safety, conditions after the quake are likely disproportionately difficult for PWDs. The streets are covered in debris and destruction, there is no electricity, and people need to scavenge for any available food and water. Additionally, literally all of the medical facilities in the city were destroyed in the quake, so there is no access to medications, doctors, anything. Even now, four days after the quake, there is extremely limited emergency care in Port-au-Prince, with people traveling 6 hours by car to one of the few undamaged hospitals in the country for emergency surgery.

In addition, there are an untold number of people who are newly disabled due to the catastrophe and its aftermath. Most of the injuries are open compound fractures, where broken bones have penetrated the skin. These require immediate surgery to re-set the bone and close the wound to prevent infection – which injured patients haven’t been able to get. These people haven’t gotten food and water, much less antibiotics.

Dr. Jennifer Ashton reported that “most of these patients have not eaten in three days. They are profoundly dehydrated and they have crush injuries to their long limbs, upper arms, body and, in some cases, open pelvic fractures, which set the scene for some very serious and life-threatening infection. In addition, when limbs get crushed like that, if they don’t have surgical management immediately, they risk losing that limb as the swelling and infection really take off and that’s what we’re seeing.” Ann Curry reported that desperate doctors were performing surgery on injured children without anesthetics. It is also likely that a number of survivors will develop Post Traumatic Stress Disorder. After the tsunami of 2004, PTSD rates averaged about 10% in the population.

It’s important to note that not everyone injured in the quake is subject to these conditions. American citizens were evacuated by U.S. Air Force planes and other chartered planes to be treated in United States hospitals. This Anchorage woman had her lower right leg crushed by rubble and was then evacuated to a hospital in Miami, where her foot was amputated. These conditions are affecting people without the money or resources to get adequate care. And they are exacerbated by the poverty and unstable infrastructure that existed prior to the quake. (Which the U.S. and France and other colonial powers created and sustained, but that’s more than I can get into with this post.)

It is easy to feel overwhelmed by this, but there are things you can do to help:

FINANCIAL DONATIONS

  • Portlight Strategies, Inc. focuses on Haitians with disabilities. It works with a community of Catholic nuns who will be opening shelters in Port-au-Prince for PWDs, and donated funds will go to “defray shipping costs of medical and clinical equipment … and for the purchase of food and other shelter supplies.”
  • Healing Hands for Haiti has been providing prosthetic and orthodic services and supplies to Haitians with disabilities since 1998 and will be deploying staff and equipment to help PWDs.
  • Christian Blind Mission, an organization focused on PWDs in the developing world, partners with local organizations in a number of medical facilities throughout Haiti. Donations will “support its Partners in the affected area with emergency assistance and long-term rehabilitation and reconstruction efforts.”

IN-KIND DONATIONS

  • Aid for AIDS is collecting medical supplies, including unused medications. They are especially interested in antiretrovirals to help Haitians with AIDS whose treatment has been interrupted by the disaster. There are drop-off points throughout the US, or you can send them to Aid for AIDS at 120 Wall Street, 26 Floor
    New York, N.Y. 10005.
  • Partners in Health is also seeking donations of these specific items: “need specific items urgently:  orthopedic supplies, surgical consumables (sutures, bandages, non-powdered sterile gloves, syringes, etc), blankets, tents, satellite phones with minutes, and large unopened boxes of medications. No small quantities or unused personal medications will be accepted.“

Please also remember to take care of yourself during this time. It’s been easy for me to spend hours reading articles, looking at photos, watching footage, and feeling increasingly overwhelmed and helpless. Don’t lose track of your own health and well being.