Category Archives: disability activism

Go educate yourself (please!)

Image description: A shocked-looking cat perches on a chair, staring straight at the camera. Text reads: Concerned cat is just looking out for your best interests when she says that your tone might be alienating well-intentioned potential allies who just need a little polite education.

[Image via Tlönista in this comment thread at Flip Flopping Joy. Description: A shocked-looking cat perches on a chair, staring straight at the camera. Text reads: “Concerned cat is just looking out for your best interests when she says that your tone might be alienating well-intentioned potential allies who just need a little polite education.”]

One unfortunately common response to marginalized people saying that there’s a problem is the “Educate me NOW” demand from “well-intentioned allies” who totally mean well, but they just lack education on these issues and so just can’t understand what the fuss is all about.

I am using the following example not to appropriate from the awesome anti-racist work that Jessica Yee and the fabulous Racialicious crew (and countless bloggers around the web!) do on a daily basis, but rather for two specific reasons: 1.) I have already talked about my personal relationship with this oft-used derailing tactic rather extensively, and could probably talk about it ’til I’m blue in the face; 2.) anti-racist activism and disability activism are not completely separate, independent social justice strains — many of us who are involved in these activist projects are, in fact, fighting similar (though NOT completely analogous) battles. For me, claiming an identity as a feminist disability activist has entailed doing my best to fight racism and white privilege alongside fighting for disability rights. This is because disability and race intersect in many, many ways — sort of like how disability and gender, and race and gender, intersect. In other words, this is not just a disability issue, or a feminist issue,  or a trans* issue, or an anti-racist issue; it affects many of us in the social justice blogosphere, if in differing ways.

The “educate me now because I want to learn, marginalized person!” response played out, yet again, fairly recently in the comments to a post on Bitch authored by Indigenous activist and writer Jessica Yee. [Full disclosure: Some of us here at FWD guest blogged for Bitch as the Transcontinental Disability Choir.] Jessica had written a post on white hipster/hippie appropriation of native dress and why it’s not only ridiculous, but racist. Makes sense, right? (If it doesn’t, you might be at the wrong blog. Or go read this. I don’t know.) Overall, this piece seems like it would fit right in on a website for a magazine that is dedicated to showcasing “feminist response[s] to pop culture.”

And then the comments started rolling in, and so did the “but you have a responsibility to educate people who mean well!” trope:

I’m sure this is in fact extremely annoying. However, you might consider that when people bring that up, they’re not saying, “Hey I’m just like you and I totally understand what you deal with,” they’re trying to make a connection and learn something. Ignorant people are a pain in the neck, but they’re mostly not trying to be ignorant on purpose.

I‘m merely suggesting that if this is a cause you deem worthy of championing, then you should have a prepared source of information for them—be it this blog, book titles, or documentaries. Encourage them to learn more about THEIR history and perhaps you’ll draw a new soldier to your army.

It seems somewhat contradictory to put stickers on your laptop that indicate a Mohawk heritage and then rudely dismiss a stranger who expresses an interest in your advertisement. Perhaps a better way to accomplish your agenda (whatever it is) would be to engage in polite and open-minded conversation with those who mistake your stickers for an invitation.

Thea Lim at Racialicious pretty much nailed it in her recent post on what went down, entitled “Some Basic Racist Ideas and some Rebuttals, & Why We Exist” (which I highly recommend that you read in full, by the way). An excerpt:

This kind of hey-let-me-help-you-achieve-your-goal-by-suggesting-you-be-more-radio-friendly response totally misunderstands (and appears disinterested) in the anti-racist project, because it assumes that anti-racism is all about convincing white people to be nice to people of colour.   In other words, it assumes that anti-racism revolves around white folks.  Like everything else in the world.

Anti-racism and people of colour organizing is not about being friendly, being appealing, or educating white folks. While individual anti-racist activists may take those tacks to achieve their goals, the point of anti-racism is to be for people of colour.

I completely agree with Thea here — and I believe something similar applies to disability activism. That is: Those of us with disabilities are not here to make abled people feel comfortable, to hold their hands as they have a Very Special Learning Experience (most often, it seems, at our expense), or to make them feel good about themselves. I, personally, don’t care how “good” your intentions are, or that you reallllllly wanna learn, or if you think I’m being mean by not dropping everything to educate you when you demand it.  While I definitely don’t want to speak for Jessica, Thea, or any of the Racialicious contributors — or for people of color who do anti-racist work — I suspect that they may feel similarly about white people who come into PoC, WoC or other anti-racist spaces and demand that whoever is doing the activist work must halt whatever discussion is going on and educate them, now, because they are good “liberal” white people and have such good intentions, and you PoC want white people like me as allies, right? And if you don’t drop everything and rush over to educate me, well, you’re just a big meanie who must not want my support after all (such “support” is often conditional, and based upon whether the marginalized person can make the non-marginalized feel comfortable at all times), or you just want an excuse to be racist toward white people! Or some other ridiculous thing.

For me personally, the willingness that I “should” have to help well-meaning folks learn is also an energy issue. I am a person with disabilities, several of which I have written about at length on this website — and one of which is a pain condition subject to flare-ups. Thus, I have to manage my time and energy extremely carefully. Having to explain basic concepts over and over again to strangers on the internet because they’ve deigned to tell me that they “want” to learn — and some of whom may think, by extension, that they are somehow entitled to my time and energy — takes work. Writing takes work; additionally, a lot of bloggers do the blogging and responding to comments thing for free, on their own time.

And sometimes, those of us with conditions that intersect with our ability to do this work end up burnt out, frustrated, or we lose our patience. Though these end results are often nothing personal, they might read like it, and we end up paying the price energy-wise only to have that person who realllllly wanted to learn petultantly respond with something like, “You must not want to educate me, then, if you’re not up to answering all of my questions!” and leaving in a huff. But they reallllly want to learn. . . that is, if someone else does the brunt of the work for them and/or gives them good-ally cookies for just wanting to be educated about all this social justice stuff. Merely wanting is not enough; you have to actually follow through for your good intentions to matter.

There is, thankfully, a solution to this problem: those people who say, or comment, that they realllly want to learn must take responsibility for their own learning. There are several ways that this can be accomplished, among them lurking on blogs for a while before one starts commenting, reading a site’s archives (and most sites have them!), picking up a book (or two), reading some articles online or off. Certainly, there are a lot of things that are privileged about this assertion; of course, not everyone has the time to read about social justice, lurk on blogs, or take similar steps. But what is also privileged is the putting the responsibility for your own 101-type education onto someone else — someone who might not have all of the energy, time and patience that you might.

[A slightly different version of this post has been cross-posted at ham blog.]

BADD: A Screenshot’s Worth A Thousand Words

More for Blogging Against Disablism Day.

I just poked around the entry for “Ableism” on Wikipedia. On the Talk page, I found a box placing the Ableism article within WikiProject Sociology:

Screenshot: This article has been rated as Low-importance  on the project's importance scale.

“This article has been rated as Low-importance on the project’s importance scale.”

Ableism of low importance within Sociology? Erm, ooookay. Let’s have a closer look at their definition of “Low-importance”:

This article is of little importance to this project, but it covers a highly specific area of knowledge or an obscure piece of trivia.

20%, people. Disabled people form around 20% of the population in Australia and the USA (and similar numbers in similar societies). One in five. Discrimination is huge, it is institutionalised, it is very often legal. Disabled people are some of the most vulnerable, the most underemployed, the most abused, the most excluded, the most neglected, the most murdered people in our cultures.

“Low importance”? “Obscure piece of trivia”?

OK, so let’s have a look at some other big discriminations. Racism and sexism, are they categorised as obscure pieces of trivia too? (On Wikipedia, I wouldn’t be surprised…)

Screenshot: WikiProject Sociology (Rated Start-Class, High-importance)

Sexism is of High Importance. OK. I agree.

So, racism. I guess the importance of racism within sociology, according to Wikipedians, would be, oh, about similar to that of ableism?

Screenshot: WikiProject Sociology (Rated B-Class, High-importance)

OK, so racism is of High Importance also. OK. I agree with that too.

So why is Ableism of Low Importance? Why does the biggest encyclopedia on earth consider it to be of lesser importance than discrimination against other minorities? Why are sociologists learning and being taught that racism and sexism are The Discriminations, that all others are secondary or tertiary or not really worth bothering about? Why, when a person is both female and PWD, or of colour and PWD, or all three, and/or lesbian, trans, non-citizen, working class, and so on, is ableism automatically ranked as the least important discrimination they’ll encounter? Why are PWD losing this Oppression Olympics, a game we shouldn’t be playing in the first place? (“Intersectionality” hasn’t yet received a rating on the Importance scale at Wikipedia.)

Other topics considered more sociologically important than Ableism (not equal, but more), as far as Wikipedians are concerned, include:

est and The Forum in popular culture

Ralph Larkin

Wilhelm Dilthey

Vixen (comics)

Stay-at-home dad

Weddings in the United States

Truce term

Friendship Paradox

Heterophobia

Babywise

Boomerang Generation

eHarmony

Lavalife

OkCupid

Yahoo! Personals

Fritzl case

List of UFO religions

Greenbelt, Maryland

The Hapa Project

Biosocial criminology

Grand Tour

Speed dating

Blond

Schoolgirl

and Hooters.

De’VIA

As I repeatedly told anyone who would listen to me, last weekend I went to a conference in Toronto. While there, I visited Toronto’s Deaf Culture Centre. 1

One of the exhibits at the Deaf Culture Centre was about De’VIA – Deaf View Image Art – which “specifically reflects Deaf experience and Deaf Culture.”

I’m still learning about De’VIA, as my particular studies are in nineteenth century d/Deafness. What I like about what I’ve seen is looking at art that is not only explicitly political, but is explicitly about being Deaf. In Toronto, the current exhibit is paintings of Sign Language.

As a Hearing person, I don’t want to talk too much about Deaf artists and De’VIA. Instead, for people not familiar with it, I’d like to show you some very iconic De’VIA images, and then direct you to some websites where Deaf Artists are writing about their work.

This first piece is by Ann Silver, called Deaf Identity Crayons: Then and Now.

A description follows this image
The image is of two crayon boxes. One is done in sepia tones, with “Deaf Identity Crayons” written across in an ‘old-time’ script. The crayons each have a label: Dummy; Lip Reader; Deaf & Dumb; Handicapped; Oralist; Deaf-Mute; Freak. The second box looks like the iconic Crayola-crayon box, with “Deaf Identity Crayons” written across the front. The crayons are CODA; Seeing; Deaf-Blind; Late-Deafened; Deaf American; Hard of Hearing; Signer; Deaf.

(Oralism is the techniques used to teach Deaf people to talk. CODA is Children of Deaf Adults.)

Silver’s biography is available on the Deaf Art website, but I especially love her description of her art:

My language of art has, over the years, metamorphosed from pictorial grammar to creativity and critical thinking. I turn to art (1) as an artistic expression of the Deaf Experience—i.e., culture, language, identity and heritage; (2) as a Zen meditation and an aesthetic recreation of the contemplative state in which it allows my thoughts to drift by without grasping at them; (3) as an emergency back-up whenever the English language gives me semantic anxiety; 94) as an academic study vis-à-vis Deaf Studies; and (5) as a visual weapon to deal with polemical issues and concerns such as stereotyping, inaccessibility, paternalism, inequality and discrimination on the basis of hearing status (a.k.a. audism)

Another very popular piece is this one, by Betty G. Miller, called The ASL Flag:

Description follows
Description: This is a diptych, and the two canvasses come together to show a waving flag much like the United States flag. Instead of stars again the blue square, it shows 28 white hands Signing. Between the red and white stripes of the flat, it has the following:
Oh can’t you seeee…. by dawn’s early light
what proudly…. we Deaf wave at visual beauty
we see in sign language burst in air…
no matter people hearing stare…
show proof that… Deaf and ASL still here…
oh why Deaf people opressed?
over the land of the free…. and the home of the brave…??

Again, I like Betty’s bio, but I will highlight this portion:

When asked to explain the values behind her work, Dr. Miller replied:

“Much of my work depicts the Deaf experience expressed in the most appropriate form of communication: visual art. I present the suppression, and the beauty, of Deaf Culture and American Sign Language as I see it, both in the past, and in the present. Oppression of Deaf people by hearing is actually cultural, educational, and political. Another aspect of my work shows the beauty of Deaf culture. I hope this work, and the understanding that may arise from this visual expression, will help bridge the gap between the Deaf world, and the hearing world.”

You can see images of Betty’s work, and perhaps buy a t-shirt or similar article with images on it, at Betty Gee’s cafe-press store.

I won’t say too much else here, except to link to discussions about De’VIA elsewhere.

Betty Gee’s website
Deaf Art, Deaf Artists
Deaf Culture – Deaf Art on About.Com
Deaf History Through Art – De’VIA revisited after 15 years!
Deaf Art.org

  1. Little-d deafness is the “medical” condition of not being able to hear, or hearing very little. Big-d Deafness is being a member of a cultural & linguistic minority that uses Sign Language. In English Canada, this is typically American Sign Language, although there are other Sign Languages used here.

When Accommodations Conflict

Accommodations can be difficult. Not only for an individual with a disability to identify what accommodation would be relevant or helpful for them, not only convincing whoever to implement the desired accommodation, and not only ensuring that the accommodation continues over time and doesn’t lead to resentment or punishment for the person with a disability. Here is an additional wrinkle – sometimes desired or needed accommodations conflict. What one PWD needs to accommodate her disability could not only not help another PWD, but might actually exacerbate their disability.

Let’s take an example: smoking. For some PWDs, especially those with mental illness, smoking can help ameliorate their symptoms, calm their anxiety, even help some with restoring neurochemical imbalances. The rates of smoking among people with mental illness tend to be much higher than the general population, in which about 20% of people smoke. Here is a chart of smoking rates among PWDs with mental illness:

MENTAL ILLNESS: PERCENTAGE WHO ARE SMOKERS
Bipolar Disorder 70%
Major Depression 60%
Schizophrenia 90%
Panic Disorder 56%
Post Traumatic Stress Disorder 60%

There are lots of theories why people with mental illness smoke. At a recent meditation seminar, the instructor was modeling deep breathing techniques for relaxation and stress reduction. He pointed out that the deep breaths, with an exhale longer than the inhale, breathing from the abdomen, exactly mimicked the breathing of a smoker while inhaling from a cigarette and exhaling smoke. I know people who took up smoking intentionally and specifically in order to help regulate breathing during panic attacks – they report that the 5-7 minutes of regulated breathing during one cigarette is enough to get them through a panic or anxiety attack.

Nicotine, the active ingredient in cigarettes, also acts as a stimulant on the brain. Some report enhanced attention, focus, and concentration, which can be helpful for people with attention or focus problems caused either by their disorders or the medications that treat them. As one study reports: “Certain thinking patterns are affected in schizophrenia including sustained attention, focused attention, working memory, short-term memory, recognition memory and even processes that are preattentive (eg reflexes). Some studies have suggested that there may be improvements in these areas after treatment with nicotine.” Those authors theorize, as have many others, that “it may be that patients “self medicate” to remediate the chemical imbalance in the brain (dopamine hypofunction in the pre-frontal cortex) which may help with certain difficulties with thinking tasks involving this PFC area and might explain why there is smoking persistence in schizophrenia.”

On the flip side, of course, there are many PWD for whom being around smokers or smoke will exacerbate their disabilities and a necessary accommodation is an atmosphere free from smoke. People with asthma and other respiratory problems or people with allergies and chemical sensitivities could be seriously harmed by being around smoke or people who are smoking, and could require an accommodation to be free from smoke exposure.

This sets up the possibility that there could be two PWDs – let’s say one with schizophrenia and one with severe smoke allergies – who require accommodations that are directly conflicting with each other. These situations are much trickier for me than when a PWD is requesting an accommodation that an employer, business, government, or other entity is saying is too difficult or expensive to implement. In those situations, I believe the accommodation rights of the PWD should trump that concern in the vast majority of cases. But handling issues of conflicting accommodations can be much more complicated, because the rule of “you must accommodate PWDs” doesn’t give us any guidance on how to proceed.

This is just one example of desired or needed accommodations that can directly conflict, but there are many others. How do you think these situations should be handled? Have you run into conflicts like this in your own life?

Note: discussions of conflicting accommodations – including the example discussed above – can become very charged and very personal, as readers and commenters may have personal preferences or needs on which accommodation to implement. Please be respectful of the needs of other PWDs in this comment thread. Specifically, comments that imply or state that smokers are inherently evil or people who don’t smoke are inherently intolerant (or similarly bright line rules) will be deleted.

Bullying – How Can We Stop It?

Here’s another horrific story of bullying, this coming out of Dickson, Oklahoma.

Austin Avery was born prematurely and suffered developmental issues as a result. Last week, when the school called [his mother] Sharlene,  she  knew something was seriously wrong. “We had a call from the school to come pick him up cause he was hallucinating. I just don’t understand why your child goes to school and comes home in a drunken stupor,” says Avery. So, she put him in the car and drove to the emergency room. That’s when doctors told her something she never imagined. “The doctor said that [Austin] was way over the legal limit [for alcohol]. Now, can you imagine a 14-year-old child and what kind of damage that can do to his brain?”

The investigation yielded a report from a fellow student, who reported that bullies had been putting Germ-X, an alcohol-based hand sanitizer, in Austin’s milk at lunchtime. This had been occurring regularly since January, without detection by the school or any adult in a position to discipline the bullies.

There are a couple things of note about this story. First is that it got virtually no coverage – I saw it only because I read several hip-hop gossip sites that picked the story up because the child is African-American. Other than those sites, I found absolutely no mention of it anywhere on the web other than the initial report from a local news outlet, quoted above. Intentionally poisoning a child with hand sanitizer seems like a pretty big deal to me – there could have been much more significant and detrimental side effects than alcohol intoxication, and even alcohol intoxication is dangerous enough when we’re talking about a 14 year old with developmental disabilities.

The second thing of note about this story is that Oklahoma already has an extremely robust anti-bullying law and state policy aimed at eliminating bullying. A watchdog anti-bulling group gives the Oklahoma law an A, indicating it is “near perfect” by their standards. Here is a description of their anti-bullying law:

Requires Safe School Committees to give special attention to bullying, incidents of unwanted physical or verbal aggression and sexual harassment and make recommendations. Encourages community involvement, one-on-one student/staff relationships, use of problem solving teams of counselors and/or school psychologists and requires the review of bullying prevention programs utilized by other states, agencies or school districts.  Requires each school district to have policies addressing the prevention of bullying and education about bullying behavior.

So – given that all those rules, policies, requirements, and education were insufficient to stop Austin from being regularly and consistently poisoned for almost four months – how can we realistically address and stop this kind of bullying from happening? How can we provide meaningful protection for children with disabilities? Is it possible to do so through laws and regulations, or will only a long term shift in ableist attitudes be effective?

By 22 April, 2010.    age, disability activism, justice, news, policy, violence   



Recommended Reading for April 20, 2010

Scott Carney (Mother Jones magazine): Inside India’s Rent-a-Womb Business

Despite the growth in services, surrogacy is not officially regulated in India. There are no binding legal standards for treatment of surrogates, nor has any state or national authority been empowered to police the industry. While clinics have a financial incentive to ensure the health of the fetus, there’s nothing to prevent them from cutting costs by scrimping on surrogate pay and follow-up care, or to ensure they behave responsibly when something goes wrong.

Benedict Carey (New York Times): Seeking Emotional Clues Without Facial Cues

Ms. Bogart has Moebius syndrome, a rare congenital condition named for a 19th-century neurologist that causes facial paralysis. When the people she helped made a sad expression, she continued, “I wasn’t able to return it. I tried to do so with words and tone of voice, but it was no use. Stripped of the facial expression, the emotion just dies there, unshared. It just dies.”

Goldfish at Diary of a Goldfish: Blogging Against Disablism Day (BADD) Will be on May 1st, 2010

Blogging Against Disablism day will be on Saturday, 1st May. This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made. [Note: Click the link for info on how you can participate in BADD 2010!]

Max Harrold (Montreal Gazette): Filmmaker in wheelchair says red-carpet rejection inspired film

[Filmmaker Sean Marckos] has it all on video: He and a colleague, both in tuxedos and with their tickets in hand, being hustled out of the famous Palais des festivals in Cannes in 2008 and 2009. They were told they could enter only through a rear entrance, away from paparazzi. “They didn’t want me next to the beautiful people like Brad Pitt and Angelina Jolie,” said Marckos, 31, who has muscular dystrophy.

National Center For Lesbian Rights (NCLR): Greene vs. County of Sonoma et al.

One evening, Harold fell down the front steps of their home and was taken to the hospital. Based on their medical directives alone, Clay should have been consulted in Harold’s care from the first moment. Tragically, county and health care workers instead refused to allow Clay to see Harold in the hospital. The county then ultimately went one step further by isolating the couple from each other, placing the men in separate nursing homes.


Idaho Revises State Laws to Remove Ableist Language

Exciting news! On March 29th, Governor C.L. Otter signed a law removing ableist language from Idaho’s state code. From the Idaho Statesman:

The new law replaces outdated language in 73 different laws – including those addressing health and welfare, education and corrections – with more accepted phrases such as “intellectually disabled.”

Disability rights advocates said the revisions send a message to regular Idahoans that their government doesn’t tolerate disrespect, since words like retarded are used, especially among teenagers, to insult others or describe distaste. Officials in several other states, including Washington and Oregon, have enacted similar laws.

Here are a few examples of changes made by the law (from the bill text of Senate Bill 1330, available here)
  • A law giving interpreters to people appearing in court or witnesses in court cases says interpreters will be given to anyone “who does not understand or speak the English language, or who has a physical handicap which prevents him from fully hearing or speaking the English language.” The word “handicap” has been changed to “disability.”
  • A law ordering criminals on probation or parole to pay for the cost of supervision allows exemptions if “the offender has an employment handicap, as determined by a physical, psychological, or psychiatric examination.” The term “an employment handicap” has been changed to “a disability affecting employment.”
  • A law requiring fire safety plans and procedures defines an ‘institution’ as including “facilities for the mentally ill or mentally handicapped.” The description now reads “facilities for people with mental illness or intellectual disabilities.”

On one hand, this isn’t a huge change, and it can be argued that these are cosmetic changes when people with disabilities would be better served by changes to the actual laws, not just their wording. But I believe removing this ableist language from the official law of the state is a meaningful step to take.  Governor Otter made a statement when signing this law:

Otter compared words like retarded to racial slurs Americans used during World War II to describe Japanese people.

“We refer to people as Asians now, as Japanese,” he said. “During the Second World War, we always used the most derogatory terms that were possible at that point. It suggested the anger in our society at Pearl Harbor.”

No, It’s Not As Easy As You Think

When I talk to people in the United States about disability and the need for accommodations, I am usually met with a bit of bewilderment. “You mean there’s still more work to be done on accommodations? I thought all that had been taken care of.” These are people who are used to seeing wheelchair ramps at the entrance to government buildings, used to seeing the hand switch for wheelchair users to open automatic doors, used to seeing the braille at the ATMs. Given their observations of those existing accommodations and a minimal awareness of the Americans with Disabilities Act (ADA) that mandates those accommodations, they assume that there’s been a consensus on the need to provide accommodations, a law mandating those agreed-on accommodations, and general compliance with that law.

As we well know, that is far from the truth. None of those assumptions are as true or are interpreted as broadly as people tend to assume. There is no general consensus on the need to provide accommodations for the broad range of disabilities that exist – there is general agreement that people who use wheelchairs should have access to government buildings, but there is nothing even close to general agreement on how to accommodate people with depression or even whether depression is a disability “deserving” of accommodation. The US does have a law mandating accommodations – but there are not equivalents in every country and there are significant holes in the ADA itself, often putting the burden of requesting accommodations and demonstrating a need for them on the person with a disability. Finally, the idea that agencies and businesses affirmatively comply with the ADA, obviating the need for enforcement, is just patently false.

A recent federal court decision in underlines all of these realities. In 2005, the American Council of the Blind filed a lawsuit against the Social Security Administration (SSA) “to compel SSA to provide alternative formats of communication that would enable [people with visual impairments] to have more equal access to participate in SSA programs.” (Court documents and information available through DREDEF’s site.) It took until 2009 for a court to agree and order SSA that it is required to issue notices to people with visual impairments in a format they can read – in Braille, large print, e-mail that can be read by a screen reader, computer disks, or audiotape recordings.

This lawsuit undercuts each of the assumptions above. First, there is clearly not consensus on providing accommodations, even to what would be considered a relatively “easy” impairment to accommodate – it is easy to anticipate the functional difficulties that a person with a visual impairment would encounter when presented with a written notice. A lot of these people – 250,000 of them – are getting benefits from SSA specifically because they have a visual impairment, so they’ve given SSA extensive documentation of those impairments and information on the functional limitations caused by the impairments. A much larger group – about 3 million in total – get retirement benefits from SSA. At any rate, SSA knows that these people have visual impairments and has detailed information on how those impairments affect them. And it still has not provided accommodations.

But what about the second assumption – there’s the ADA, right? It turns out that the SSA is not subject to the requirements of the ADA! The ADA applies only to state and local governments and agencies that receive federal funding – it does not apply to federal agencies such as SSA. (Raise your hand if you knew that – few people do!) The only disability rights law that applies is a precursor to the ADA, Section 504 of the Rehabilitation Act of 1973. While the requirements regarding accommodations from government agencies are largely similar, the Rehabilitation Act does provide limited rights in comparison to the ADA.

It’s also very clear that the SSA – despite being the primary provider of cash and medical benefits for people with disabilities – did not consider that it had any obligation to provide accommodations. When individual plaintiffs with visual disabilities requested that they be given notices in alternative formats, they were simply told that no other formats were available. This included notices to which people must respond within 10 days or risk losing their benefits. Even when they were initially sued in 2005, SSA argued that the Rehabilitation Act “did not even apply” to the issue of notices to people with visual impairments. Similarly, SSA did not consider itself obligated to let benefits recipients know that they had accommodation rights under the Rehabilitation Act and laying out a process for them to request and enforce those rights.

The result of the litigation is that SSA is now required to develop a procedure to 1) notify benefits recipients of their rights to accommodations for visual impairments  and 2) provide notices in alternative formats when recipients request them. Which is certainly a good thing – but one that I would simply expect from a government agency that administers disability benefits, rather than having to be ordered by a federal court after 5 years of litigation. And if accommodations that are this common sense, from a federal agency set up to deal with people with disabilities, are so hard to obtain and enforce, that demonstrates how very far we are from a society where PWDs are meaningfully accommodated.

Happy Cesar Chavez Day!

Here in California, today is an official State holiday to celebrate the life and work of Cesar Chavez. Chavez worked to promote and enforce the civil rights of farm workers and, with Dolores Huerta, was cofounder of the United Farm Workers of America, or UFW – still one of the United States’ two major union umbrellas. While his work is usually viewed through the lens of organizing for Latinos, there is a significant disability component to his work.

Migrant farm workers are affected by a number of intersecting a complex factors which negatively affect their health and put them at risk of becoming permanently disabled through their work. They are likely to be exposed to harmful chemicals or dangerous work situations and because they often live on the farm under the control of the farm owner, they have little access to health care. This is all complicated by the immigration status – or lack of – of the workers. Here’s a brief overview of the occupational hazards, from the National Center for Farmworker Health:

The agriculture industry is one of the most dangerous occupations in the United States. While farmworkers face workplace hazards similar to those found in other industrial settings, such as working with heavy machinery and hard physical labor, they also face unique occupational hazards including pesticide exposure, skin disorders, infectious diseases, lung problems, hearing and vision disorders, and strained muscles and bones. Lack of access to quality medical care makes these risks even greater for the three million migrant and seasonal farmworkers who work in the fields every year.

In 2007, for every 100,000 agricultural workers in the U.S. there were 25.7 occupational deaths in agriculture. This compares to an average rate of 3.7 deaths for every 100,000 workers in all other industries during this same year. The Centers for Disease Control and Prevention label agriculture the most dangerous industry for young workers in the United States, accounting for 42 percent of all work-related fatalities of young workers between 1992 and 2000. Fifty percent of these victims were younger than 15 years old.

During their daily work, farmworkers are often exposed to pesticides. A 2002 study examined take-home organophosphorus pesticide exposure among agricultural workers and found pesticides in dust samples from 85% of farmworkers’ homes and 87% of farmworkers had pesticides in dust samples in their vehicles. In addition, 88% of farmworker children had organophosphate metabolites in their urine.

Infectious diseases among the farmworker population are caused by poor sanitation and crowded conditions at work and housing sites, including inadequate washing and drinking water. Farmworkers are six times more likely to develop tuberculosis when compared with other workers, and rates of positive TB results between 17% and 50% have been reported throughout the United States.

Because farm labor consists of constant bending, twisting, carrying heavy items, and repetitive motions during long work hours, farmworkers often experience musculoskeletal injuries. Furthermore, workers are often paid piece-rate, which provides an incentive to work at high speed and to skip recommended breaks. From 1999 to 2004, almost 20 percent of farmworkers reported musculoskeletal injuries.

Another complicating factor is the prevalence of child labor on these farms. It is obviously difficult to quantify this phenomenon, but worldwide, approximately 132 million kids between the ages of 5 and 14 work in agriculture. In the United States, somewhere between 300,000 and 800,000 children do agricultural work, sometimes working 12 or even 14 hour days. Environmental pollutants like pesticides have greater effects on children and their growing bodies are often at greater risk of harm from musculoskeletal and other injuries.

The punishing nature of this work is well known and acknowledged by government agencies. The Social Security Administration, which provides cash benefits and medical coverage to individuals it determines are “permanently disabled,” has a special category for “the worn-out worker.” This is a provision specifically for someone with less than a 6th grade education who, after 35+ years of arduous manual labor, can no longer return to that previous employment. The most common example of someone who fits this category is a migrant farm worker – someone who worked in orange orchards, climbing ladders, carrying heavy boxes of fruit, whose body has simply broken down and can no longer sustain that arduous labor.

There are three million workers currently in the fields, including a significant number of children, for whom this is the expected outcome – if they manage to sustain their labor for thirty five years. Cesar Chavez fought for those people and fought to protect them from outcomes and conditions that were, in his time, even worse and more damaging than what I’ve described above. We now must continue his fight.

Si Se Puede!

Stigma Kills: A Concrete Example

Often when bloggers or activists push back against ableist language and stereotypes in the media, especially pop culture, someone will respond with an argument that there are more important disability issues to address and that the topic at hand is mostly irrelevant to disability rights as a whole. This has happened with each of the posts in the Ableist Word Profile series, it’s happened with discussion about ableist tropes in pop culture, it’s happened when critiquing the vast overrepresentation of criminal behavior in news coverage of people with mental illness.

I believe these things matter very much. Perhaps not individually – if I slip and use the word “lame” pejoratively, it does not automatically cause a person with a disability to die instantly. But each individual instance adds up to become a trend, to become a larger understanding and expectation of how things are. And if those understandings and expectations aren’t accurate, it can have dramatically horrific results.

This is because a lot of our ongoing decisionmaking is done automatically, unconsciously. This is because we are constantly presented with such a vast amount of information that if we stopped to consciously evaluate everything, we’d never be able to do anything at all. When I see an object with keys labeled with letters and laid out in the QWERTY design, I recognize it as a keyboard an assume I use it to manually input written data into a computer or typewriter or phone or other device. This saves me the trouble of figuring out each and every time what this object is, what it is for, how I am supposed to interact with it, and what end result I can expect. I do this instantly, even though it is immensely complicated – it has been extraordinarily difficult to program a computer to identify, say, a keyboard from a photo or video, regardless of lighting, angle, and lots of other variables that the brain can process almost instantly.

There are similar examples for evaluating other sensory input. When I touch something, I know instantly and without consciously considering it whether the object is solid or liquid, dry or wet. I have no idea how I make that evaluation and instructing someone else on making that judgment would be immensely difficult for me – but when my foot touches a wet patch of carpet en route to the bathroom in the middle of the night, I pull my foot back lightning fast to avoid what is surely cat puke. If I feel myself losing balance, I put out a hand to catch myself without consciously deciding to, because my classification of my sensations as “losing balance” was done entirely unconsciously.

How does stigma fit into this? Well, a stereotype is an unconscious cognitive shortcut – instead of examining an individual person or situation, we apply a stereotype to make assumptions. While a stereotype is usually seen as a negative thing, they serve an important purpose by allowing us to make educated guesses. For example, when I go into a fast food restaurant, I know to go to the counter and give my order to someone behind the counter, usually wearing a uniform. While this has held true at the places I’ve visited in the past, if I go to an new fast food restaurant that I haven’t visited before, I will assume that I use the same procedure. That’s a useful assumption that saves me the time and energy of approaching each situation as brand new and unrelated.

There are times when stereotypes can be harmful and damaging, as we well know. The stigma against PWDs is an assumption applied to all PWDs simply because they are PWDs, assuming they have a set of presumed characteristics, motivations, and beliefs. It is a stereotype composed of all the understandings and expectations of PWDs conveyed by all the little things – the word choices of the people you talk to, that one character in that on tv show, that story you saw on the news last night. And although the specifics fade away, most people are left with vague, unconscious associations. Again, some of these associations are essentially value-neutral, as how I generally associate red with “stop” and green with “go” from traffic lights and signs. But people can also have unconscious associations around more complex and problematic issues, like race, gender, and disability status.

Social psychologists from Harvard developed a computer-based test to measure the existence of implicit associations and stereotypes – the Implicit Association Test (IAT). The IAT asks users to rapidly categorize words to the left or right of the screen. From the IAT FAQ:

The IAT asks you to pair two concepts (e.g., young and good, or elderly and good). The more closely associated the two concepts are, the easier it is to respond to them as a single unit. So, if young and good are strongly associated, it should be easier to respond faster when you are asked to give the same response (i.e. the ‘E’ or ‘I’ key [to indicate left or right]) to these two. If elderly and good are not so strongly associated, it should be harder to respond fast when they are paired. This gives a measure of how strongly associated the two types of concepts are. The more associated, the more rapidly you should be able to respond. The IAT is one method for measuring implicit or automatic attitudes and is featured on this website. There are other methods, using different procedures, that have been investigated in laboratory studies.

I’ve taken a number of IATs before (because I’m dorky about cognitive science and this kind of stuff) and believe that they have correctly identified in me some negative unconscious associations. For example, I unconsciously associated women with home and family and men with business. Consciously, I strongly disagree with that association! So when I do consciously consider my assumptions about those associations, I override and reject my unconscious associations.

When researching this post, I took the IAT that measures unconscious associations around disability. (I can’t link directly to that test, but it can be found in the IAT demonstrations available here.) Taking the test, I found that I have a slight automatic preference for abled people over PWDs. This doesn’t mean that when I act, speak, or even think about these issues I exhibit that preference. It doesn’t mean that I “really” prefer TABs to PWDs. It means that I have been sufficiently inundated by messages that associate TABs with “good” and PWDs with “bad” that I have a slight unconscious tendency to apply that association, a tendency almost instantaneously overruled by my conscious thought. So it is an association that exists only for the tiniest of moments until it is extinguished by cognition.

How can those tiny moments, almost too small to measure, even matter? Well, as Chally recently posted about, a Los Angeles police officer shot and killed an unarmed man with an unspecific cognitive disability autism 1. The officer fired as the man reached towards his waistband after failing to respond to verbal commands from the police. From the LA Times article linked in the post:

[LAPD Officers] Corrales and Diego believed “he [the PWD] was arming himself” and fired, Assistant Chief Earl Paysinger said at an afternoon news conference.

The officers made decisions in a fraction of a second,” he added.

In a fraction of a second.

Just long enough for the unconscious association to spark but not long enough for conscious thought to override it.

Just long enough for stigma to kill.

  1. ETA since his family disclosed that he had autism in numerous public interviews.
Next page →
← Previous page