Recommended Reading for April 23, 2010

This is going to be a quick one from me as I’m out of town right now, attending a Graduate Student Conference on Disability Studies, because my life is awesome. I can’t wait to tell everyone all about it, at length.

Disability Blog Carnival 65: Balance is up at The River of Jordan! The posts are, as always, varied and wonderful.

Eyesight to the Blind [Problematic language in title – see Rainbow’s comment]

When my great-aunt says she’ll pray for me, she’s not saying it because there’s something messed up about me that needs fixing. She’s saying it because she prays for the people she loves. The person I encountered today wasn’t saying it to everybody she passed. She probably saw a person using a mobility scooter and thought something like “disabled person = in need of healing”.

What would healing look like for me?

Tributes paid to David Morris

Tributes have been paid to David Morris, much-loved and respected disability campaigner and mayoral adviser, who passed away yesterday (Sunday), aged 51.

Mr Morris, who was on secondment from his role as Senior Policy Advisor on Disability to the Mayor of London, had been working with the London Organising Committee of the Olympic Games (LOCOG) as External Access and Inclusion Coordinator.

Wild Ride for Number 9

In the end, the name was the same atop the wheelchair division of the Boston Marathon yesterday, but for Ernst Van Dyk it hardly was a typical triumph.

The South African won for a record ninth time, but it was his toughest victory yet. Van Dyk had to surge over the final 2 miles to overtake American Krige Schabort to finish in 1:26:53, a mere 3 seconds ahead of Schabort.

An Open Letter to Charles Tan

When I read your essay you seemed to define promoting cultural diversity by “encouraging people to write about other cultures”. Certainly Buck was encouraged and rewarded – she received a Pulitzer in 1932 and a Nobel Prize in 1938 “for her rich and truly epic descriptions of peasant life in China”. If writing about the Other were such a truly prodigious feat, then surely Vikram Seth should be bestowed with more renown for not one, but two books, set entirely in white people western land?

But transcultural traffic is hardly such an egalitarian affair. You say: “That there is a small but growing awareness of the literature of other cultures is, in my opinion, a liberty that only occurred because of humanity’s continued struggle for “enlightenment” but this flies in the face of a vast body of historical evidence that cultural currency has been a tool of capitalist trade and colonial enterprise. Furthermore, by whose standards are you defining awareness of such literature “small”? There are many Indians who will tell you about Rustam and Sohrab, about Laila and Majnu–stories not actually from our subcontinent. And as Fatemeh Keshavarz points out, Iran has a long history of translating books into Persian.

Follow-up on the Clitoraid post earlier this week: Clitoraid responds to their critics, but key questions remain unanswered

Clitoraid have officially responded to questioning of their organisation and the controversial ‘adopt a clitoris’ fundraising scheme (a summary of discussions to date on this topic can be found here).

On Being Well

Not every disability can be healed. I learned long ago that being “incurable” and being well are possible. But don’t go looking for this anomaly in the rule book. In effect what you need to do is break the rules that have long been established for how to think of being well. I am for instance the best blind sailor in my family. Never mind that I’m the only blind sailor in my family. I did in fact teach my sighted wife how to dock a boat. There’s no rule book for this.

Disability as a Game

In the coming months my children will come to know the terms disablest and able-bodied privilege, because it has become clear to me that while they are empathetic of my personal circumstance because they love me, they are not aware that this very same empathy needs to be extended beyond our little family. Not only do the differently abled have a right to take up space (a struggle they have seen first hand), we deserve not to have our lives mocked for the purposes of entertainment or to deliver a cruel retort.

Top 10 Things That Annoy People in Wheelchairs

In a recent poll done by the Christopher & Dana Reeve Foundation, wheelchair users were asked :

What do family, friends, and strangers do to you when you are using your chair that annoys you?

The Virus-Ridden DNA of Aborted Babies

Well, a new group of people has joined this fight. Rather than being autistic-adults, parents of autistics, or researchers, this group has little personal contact with actual autistic people. Instead, it is one group of pro-life people wanting to use autism as proof of why abortion should be outlawed – never mind that it has no basis in fact!

By 23 April, 2010.    recommended reading   

Dear Imprudence: I Can Totally Police My Friends, Right?

Prudie’s livechat with readers last week featured a whole cornucopia of bad advice, including some substantial slut shaming and diagnosis of a reader via the Internet, but one thing jumped out at me:

Santa Cruz, Calif.: My friend was diagnosed with a chronic illness about 15 years ago. She takes care of herself and has learned to live with her condition. She remained active and always appeared healthy. Two years ago, she discovered that she has food allergies that are the cause of her health problems. She was disappointed that she would have to live on an extremely restricted diet but hopeful that her body might recover once the allergens were out of her system.

Since she started the new diet, the results have been dramatic. She looks sick. She is underweight, pale, and always tired. She also has gastrointestinal problems which she never complained about before the diet. And she still suffers from the original condition. If I ask how her diet is going, she says she feels great and she’s happy she is no longer poisoning her body. Should I let her know what I’m observing? I don’t want to pry, but should I ask more about what kind of medical care she is getting?

Emily Yoffe: It’s possible your friend is not seeing a quack, but I would bet she is. I’d also bet she is paying a lot of money to the doctor who diagnosed her “allergies.” I wouldn’t be surprised if this doctor sold supplements or special diet food to keep her “healthy.” It is strange that people will ignore the signs that a treatment is making them worse because they want so much to believe. You could try to do some research on the doctor and the diagnosis. I’m sure you can turn up evidence that questions the supposed food allergies. But even in the absence of that, you should express your concern in a way that doesn’t make her defensive. Tell your friend that you’re simply worried that until she went on this diet, she looked and seemed robust, but now she is pale, tired, and ill, and you think it’s time she got a second opinion about the course of treatment she’s on. Then if she won’t listen, you can be reassured you’ve done what you could.

Right, so, here’s the thing. Even when it’s your ‘friend’ it’s still policing. And, yes, telling people that they are making their allergies up is also policing. ‘Expressing your concern’ is policing. Whether someone’s a friend, coworker, or complete stranger, it is up to that person to approach you to ask for help, not to you to tell ou what to do.

And, you know, I have some friends whom I am pretty sure are receiving questionable medical care and possibly being taken advantage of. But it is not my business. If those friends approach me and ask me for my opinion, I will be honest, but until then? Not. My. Business. It is not my business to tell my friends how they should approach their medical care. Period. Just like it’s not Santa Cruz’ business to police this friend.

Another reader followed up, pointing out:

Joe (Chicago): Re: Restricted diet. If the person’s friend had a chronic illness like Crohn’s or ulcerative colitis, and then it turns out that she was ultimately diagnosed with celiac disease, her story wouldn’t be unusual. It’s often quite hard to figure out how to cope with a gluten-free diet, especially if you previously ate a lot of wheat-containing foods. The subsequent crappy diet (meaning not enough calories or carbohydrates) can often lead to weight loss, which itself can make people look like they’re sick.

Emily Yoffe: Good point. But it has become all the rage to declare everyone has a wheat allergy when they don’t. But anyone who is going on a “healthful” diet and ends up sicker needs to seek another medical opinion.

And again, Prudie went the ‘fake allergies’ route.

The thing about the fake allergies myth is that it kills people. This widespread belief that most people are just ‘making it up’ means that people do things like thinking it’s ‘not important’ if a few nuts end up in a dessert destined for someone who specifically said that ou was allergic to nuts. It’s just made up, right? Or, worst case scenario, maybe that person’s skin will break out a little, right?

What this person asked for was a free pass to police her ‘friend.’ And that’s exactly what she and readers got from Prudence, along with a healthy side of ‘oh, allergies are just made up anyway to be trendy or something.’

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 22, 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

A very messy workbench sits in an equally cluttered room with an unfinished wall. Art supplies are scattered everywhere. In the center is a white plastic bucket which someone has used a marker to label "ANTI-DEPRESSANTS."
A very messy workbench sits in an equally cluttered room with an unfinished wall. Art supplies are scattered everywhere. In the center is a white plastic bucket which someone has used a marker to label "ANTI-DEPRESSANTS."

Photo by David Shrigley, via Learning Log.

Strict Deadlines, Disabled Veterans and Dismissed Cases

Three years ago, the [United States] Supreme Court said there are some filing deadlines so rigid that no excuse for missing them counts, even if the tardiness was caused by erroneous instructions from a federal judge. The court’s decision concerned a convicted murderer who had beaten a man to death. But now it is being applied to bar claims from disabled veterans who fumble filing procedures and miss deadlines in seeking help from the government. The upshot, according to a dissent in December from three judges on a federal appeals court in Washington, is “a Kafkaesque adjudicatory process in which those veterans who are most deserving of service-connected benefits will frequently be those least likely to obtain them.”

HODASSU: Help Orphans and Disabled Stand a Skill in Uganda

HODASSU vision is to develop a healthy and self-sustaining community that protects the rights of orphans, vulnerable peoples and persons with disability, through economic development, vocational training, education and counseling.

Disabled must figure in Sierra Leone rebuild

People with disabilities must not be left out as Sierra Leone rebuilds after ten years of civil war, say the writers of a new study on living conditions for the country’s disabled. Disability is a major issue in the west African country, where thousands of people had limbs cut off dightinguringthe1991 -2002 fighting which completely devastated the country, its infrastructure, its economy and people. Leonard Cheshire Disability’s report, just out, is one of the first comprehensive studies into disability in Sierra Leone. It is hoped the findings will help the needs of people with disabilities be included in rebuilding the country’s infrastructure and social services. “The disabled community’s voice is generally a voice that is not heard in discussions of development,” said Bentry Kalanga, the organisation’s senior programme manager for Africa. “Up to now disability has not been regarded as a major development issue; it must be highlighted more.”

Disability rights activists [in India] oppose copyright regime

The Indian Copyright Act does not explicitly allow for conversion and distribution of reading material in alternative formats that are accessible to persons with disability. A draft amendment, that was made public in February by the Union Ministry of Human Resource Development, introduces a copyright exception for reproduction or issue of copies in formats “specially designed” for persons with disabilities, such as Braille and sign language. However, this “token exception” leaves out a large section of people affected by cerebral palsy, dyslexia or partial impairment. A sizeable section of the visually impaired is not trained in Braille and relies on audio, and reading material with large fonts and electronic texts. The proposed copyright exception is of no use to this section.

New disability laws [in Scotland] are welcomed as spur to close pay gap and improve business practice

CAPABILITY Scotland has welcomed the introduction of the UK Equality Act, which it claims will help challenge discrimination against disabled people across the country. The disability organisation has offered its backing to the legislation, which will bring together all of the UK’s anti-discrimination rules under one banner and replace the existing Disability Discrimination Act. The act, which will come into force in October will compel companies to publish their pay scales for men and women and require public sector agencies to presume in favour of firms with good equality records when issuing public contracts.  But it also strengthens the duty placed on all service providers – including schools and other public sector organisations – to make reasonable adjustments to their facilities or the way they carry out their activities to enable disabled people to access their services.


Y’all may know I’m mentally ill. I have mentioned a time or eighteen. It’s a thing I do, talking about my experiences with mental illness and mental health care, trying to provide an anecdote to do with the data.

What I talk about somewhat less is having cognitive variations and learning disabilities. Which I do. Most of my life I thought I didn’t. I was never evaluated for learning disabilities; I got good marks in school (some of the time). I was not evaluated for autism spectrum disorders. When I was a child ASD wasn’t a diagnosis at all. There was just autism and the perception of it was really scary: autism meant kids who didn’t talk at all and had to be put in helmets so they didn’t hurt themselves too much from banging their heads against the wall and lived in institutions. Autism definitely didn’t mean anyone like me. (Even though I did have repetitive motion behaviours — my relatives talk about it a lot as a cute baby story.) When autism spectrum disorders did become diagnoses in the U.S. I was an adult and adults are rarely evaluated for autism. Or cognitive variations. Or learning disabilities. They’re childhood things aren’t they? (Don’t those kids grow into adults?)1

It is real damn frustrating. It’s hard to start anything and harder to finish what I do start. I would love to be organised but I can’t; when I have to put something in my hands down I have to put it down now and that means wherever I’m at and not wherever that thing lives. Sometimes digits transpose when I am reading or keying or writing them and sometimes the words I read are not the words on the page but I learned a long time ago to compensate well enough no one knew. I compensated well enough I forgot I had this thing that might be dyslexia until I started paying attention to what my perceptions and thoughts were doing. I have a lot of trouble communicating in person using my voice — I don’t process speech well and I don’t speak well.

And sometimes I am just not good at thinking. (Lately this has been a lot of the time.) It’s hard to even complain about having trouble thinking to my wife. She perceives it as Moira Is Being All Negative About Herself Again and she interrupts me with “You’re not stupid. You’re one of the smartest people I know” and I’m all faaaaaaack what’s the point? and I just shut up again. I’ve had this conversation and it doesn’t go anywhere nice.

Thing is I’m not saying “I feel stupid and I don’t like myself for it.” Okay there’s some of that I wouldn’t be me without some of that but it’s more frustration at not being able to do shit what is needful. I am trying to say I feel stupid and I need help doing shit. Please. Being smart does not help me. Being able to rattle on about how cool quantum mechanics was when I finally managed to lose the distortions dualism imposes on quantum-scale stuffs and wrap my head around monist models of quantum-scale mechanics is not a useful skill in daily living. In fact being perceived as highly intelligent whilst actually having cognitive impairments has been an enormous pain in the ass. People assume because I can understand quantum mechanics and high-order differential equations (and possibly most important because I have a talent for writing) I am globally smart and can apply that intelligence to any problem needing solving. Which I can’t. But I have trouble getting help because I’m smart.

It’s more than just “Gosh Moira you should be able to do these things.” It’s also “Gosh Moira you are so smart you can’t possibly have cognitive impairments.” And people feel taken advantage of when they do help. They’ll see me do something fucking ludicrous nerdy like building a reference document for my tabletop role-playing-game using endnotes and a bibliography in compliance with The Chicago Manual of Style. I can’t blame anyone for wondering why — if I can do that — I can’t do something that. Y’know. Pays? There’s a Voice in my head saying the same thing all day every day. (Most of the time it looks like I’m working on the nerd project I actually spend not working on it. It’s just since no one’s paying me to do the nerd project no one cares if I’m reading manga instead of working.)

Only rarely do I get any farther than “I feel stupid” before I get cut off. It’s exhausting, trying to get the rest of this said and heard, so that’s usually where it stops. In text — in a blog post — I can say it all at once. Nobody has to read it all, but I can say it. There’s maybe a better chance for communication this way.

  1. On my Big-Ass List of Shit What Needs Doing is finding someone who can do that evaluation and see about official diagnosis; if nothing else it would help to have to throw at the Social Security Administration for disability stuff. But some people who have known me a long time and are not unfamiliar with autism traits have said that autism is not inconsistent with my history and my behaviour. Even if they don’t feel qualified to make a full-out diagnosis. They include my wife — who is admittedly not all that objective but it is kind of her field (one of her Master’s degrees is in psychology) — and my general practitioner (who reads up on things her patients ask about when she doesn’t know) and the therapist I’ve seen, off and on, since before I met my wife. What with there being rather a lot of spite for people who are ‘self-diagnosed’ I usually write about the traits directly and avoid the diagnostic label. But I’m reasonably confident I am actually autistic. The Bad Self-Diagnosed Autistic Person who full-out claims an autistic identity with all the negative parts that go along with and is doing it to be an enormous jerk seems to be a unicorn. But I have seen hatboxen in fora like F•rk write hatboxish shit and follow it up with “i cant help it i got teh assburgers hur hur” which is yeah appalling behaviour.

Recommended Reading for Wednesday, 21 April

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

A stack of Braille and large print recipe cards for what appears to be salsa; part of the recipe is covered but ingredients like cilantro and papaya are visible.

(Photo by Flickr user cobalt123, Creative Commons license.)

The Winston-Salem Journal: Against Their Will: North Carolina’s Sterilization Program

They were wives and daughters. Sisters. Unwed mothers. Children. Even a 10-year-old boy. Some were blind or mentally retarded. Toward the end they were mostly black and poor. North Carolina sterilized them all, more than 7,600 people.

For more than 40 years North Carolina ran one of the nation’s largest and most aggressive sterilization programs. It expanded after World War II, even as most other states pulled back in light of the horrors of Hitler’s Germany.

Contrary to common belief, many of the thousands marked for sterilization were ordinary citizens, many of them young women guilty of nothing worse than engaging in premarital sex.

This is an amazing multipart series which unfortunately they decided to make inaccessible via Flash/frames. For those who can access it, it is well worth a read.

pocochina at The Raging Prosecutrix: It’s just like Christmas! Another round of feminist generational sniping!

Both articles flagrantly miss the most important point which can be gleaned from the article – CRAPPY GODDAMN REPORTING, which is a part of the knee-jerk non-liberalism of the media in general and anti-feminist backlash reporting to be specific, which ends up compounding the issue the reporter was pretending to highlight – and instead focus on that ever-popular group which just has it so fucking good in the world, older women.  Both posts include a blatant call for the middle-aged women running organizations to step aside, solely because they are older, and therefore completely incapable of relating to or respecting younger women.

Jessica Yee guest posting at Feministe: Making the connections: Sexual Violence in Native Communities

The other important reason I can’t ignore the incidence of violence is because as an Indigenous person I come from a culture and a people who believe that EVERYTHING is related – and we take that teaching seriously. So moreover I can’t say, “well sexual health and violence is over here, but you know the environment department is over there” because if I continue to do that, SOMEONE is always going to lose out and as a young person I have a responsibility to the upcoming generations to make sure we don’t do that.

An update on the case Annaham mentioned last week: Los Angeles Times: Disabled mother of triplets, Abbie Dorn, visitation rights

Lisa Helfend Meyer, Abbie Dorn’s attorney, argued that Paul and Susan Cohen, Abbie’s parents and conservators, have a right to make decisions on her behalf; stripping them of that ability leaves Abbie without anyone to speak for her.

Other court cases have upheld conservators’ rights to determine medical care for people who have been declared incompetent, including terminating feeding tubes, an action that hastens death.

“If a conservator can do that, then why shouldn’t a conservator make a decision to pursue visitation?” Meyer asked. “It’s a fundamental right. Abbie is alive. She is entitled to pursue visitation. If she is denied the opportunity, she is denied equal protection under the law.”

Irina Nelson at The Scottish Sun: Blind fury (got to love the headline, right?)

Sally Clay, 30, claims she was told by two doormen in Dundee that her special cane was “too dangerous”.

But when plucky Sally read the riot act she says they then told her and her friends the Underground club’s insurance “did not cover blind people”.

Anthony Lane at the Colorado Springs Independent: Pueblo doctor sees no rest for the needed in Haiti

So the situation is dire, with the rainy season starting and hurricane season still to come. And yet Smith, 55, is already starting to see a replay of the cycle he has observed in nearly 10 years of doing medical work in Haiti.

“You get a lot of attention,” he says, “then it kind of dies down to those of us who got hooked for more of a long-term relationship.”

Occupational Hazards: Dangerous Conditions in the US Mining Industry

Here in the United States, headlines have been blaring over the last few weeks about the 29 coal miners killed in West Virginia at the Upper Big Branch Mine. Even the President was outraged, and the public attention may result in a push to reform the Mine Safety and Health Administration (MSHA) to give it some more regulatory teeth, although there are legitimate questions to be asked about how easy it will be to enact tougher regulations when there’s a revolving door between the mining industry and Congress. Massey Energy Company, which owned the mine, had a history of safety violations but regulators were powerless to do much about them.

52% of the electricity generated in the United States comes from coal. The coal industry in the United States has been criticized for being highly corrupt, for engaging in horrific environmental practices such as mountaintop removal, and, of course, for significant safety violations which put worker health at risk. The mining industry has become more aggressive and more sophisticated to feed the demand for coal in the United States, resulting in longer hours for miners and much more occupational exposure to hazards.

Over 130,000 people work in coal mines in the United States so that we can run our refrigerators, turn our lights on, and, yes, type at our computers. Disasters like the incident at the Upper Big Branch Mine are awful, and they should not happen, and they would also be preventable if MSHA had more regulatory teeth.

But there’s another problem which affects coal miners in the United States, and it’s one which doesn’t get a lot of press. It kills an estimated 700-1,000 miners every year. In the 1970s, death rates from this problem started to decline, but in the 1990s, they rose again, a reflection of changing practices in the coal industry.

That problem is black lung.

Black lung is an occupational and fully preventable disease caused by inhaling coal dust. Miners are more likely to inhale coal dust now than ever before due to changes in mining techniques. Long shifts, increased production, and very deep mining all contribute to a rise in black lung rates. Black lung used to be observed primarily in older miners with a long work history, but today it is increasingly common in younger miners who have not been working in the mines for decades. This illustrates, starkly, that coal miners are inhaling more coal dust than ever before.

Also known as coal worker’s pneumoconiosis or miner’s pneumoconiosis, black lung occurs as inhaled coal builds up in the lungs. The lungs cannot express the coal, and over time this leads to inflammation and scarring. Parts of the lung tissue may die because the trapped coal cuts off the blood supply to the lung. In the early stages, people with black lung experience shortness of breath and a recurrent cough which does not resolve. As the disease progresses, damage spreads to the heart and the miner can also develop autoimmune diseases.

Black lung does not kill right away. Numerous miners are disabled by this disease and in fact benefits are specifically made available by law to miners who have been disabled by black lung. There has also been a move to renegotiate the terms of those benefits to make them more comprehensive. The health insurance reform bill which recently passed in Congress included a clause which:

…reversed 1981 legislation that put the burden on a miner of 15 years or more to prove that his or her disability is caused by black lung, a collection of respiratory illnesses caused by inhaling dust. The new changes also automatically transfer benefits to spouses and other dependents after a miner dies — accepting the presumption that black lung contributed to the death of a miner of 15 years or more. (source)

These changes were resisted by the coal industry and the insurance industry, naturally.

There are two mechanisms for protecting miners from black lung. The first is the use of respirators to limit the amount of coal dust inhaled. The second is the use of monitors to track levels of coal dust in mines. When levels rise too high for respirators to provide protection because they clog the respirators, the monitors send an alert. The monitors are expensive, however, which has made mines slow to adopt them.

In the wake of this most recent disaster, some people have wondered where the Union was; surely, one of the functions of a union is to protect the health and safety of workers, right? I hope it comes as no surprise to learn that the coal industry is also anti-union. The Upper Big Branch Mine is a non-union mine. Not, I would note, by choice of the workers. The workers have voted for a union and were threatened by the CEO of Massey Energy until they backed down.

There are numerous other industries in the United States characterized by dangerous working conditions which lead to illness, disability, and death for their workers. Workers in these industries enjoy few protections. Meat packing plants, for example, are staffed heavily with undocumented workers who are afraid to file complaints for fear of being deported. Workers who do complain are simply fired and replaced with new ones.

Occupational health and safety are disability issues. Rights for workers is a social justice issue. People are injured, disabled, and killed every day in the United States by preventable working conditions and this primarily only attracts attention when mass casualties are involved.

Percy Jackson and the Olympians: The Lightning Thief — The Special Thing About You

Percy Jackson, a pale young man in a grey t-shirt and jacket holds a lightening bolt in his hands in a New York City Background.Every now and then a movie comes out and I get super excited about it because it sparks something form my childhood or youth that I love.

Percy Jackson and the Olympians did that. I loved Greek mythology in High School (even if I went a little cross-eyed reading The Odyssey and The Illiad). Hollywood is trying to make mythology cool again, and I was stoked about that.

I so wanted to see this movie…and because I think I live under a rock sometimes, I hadn’t heard it was a book series *scribbles a wish list*.

And then we went to the theater.

***Spoilers Ahead. Turn Back Now!***

Last Chance to Avoid Spoilers!Read more: Percy Jackson and the Olympians: The Lightning Thief — The Special Thing About You

‘Normal’ and the Dominant Narrative

He got through school, he has a good job and he married. That’s probably the biggest concern of Tourette’s sufferers and their relatives: Will their life be normal?

This quote comes from Anne Miller’s Washington Post piece, ‘‘American Idol’ segment helps push Tourette’s Syndrome into cultural mainstream,’ which I mentioned in ‘Whose Voices?‘ There’s a lot to unpack here, because there are a whole lot of problematic things going on.

‘Normality’ is often treated as a holy grail, especially for people with disabilities. Everything’s ok, as long as we can be normal, or at least act normal. ‘Normal’ is, of course, decided by the dominant members of society and any attempt to redefine normal from another perspective will be met with significant pushback. People who reject society’s definition of normal are viewed as highly suspect; look at the critical reporting on the Mad Pride movement, for example. How dare those people say they don’t want to take medications? How dare people say that being ‘normal,’ that fitting in with society’s demands, isn’t a big priority for them? For that matter, how dare people reject psychiatricization and the very idea of being ‘mad’ at all?

What this quote tells us is that getting through school, having a ‘good’ job, and getting married are the paragons of normality. People with disabilities who accomplish this triad of goals are role models. We should all aspire to this. Anyone who doesn’t is just giving up. Anyone who doesn’t want a college degree, a good job, and a spouse is clearly a social failure, no matter what ‘reasons’ can be mustered to explain why these goals are not of interest.

Never mind that there are barriers to getting through school. Everyone wants to go to school, right? There is not one single person in this world who is not interested in going to college. Who doesn’t believe that school is something that ou needs. Who has other goals. College is where it’s at! After all, if you don’t go to college, you are an abject failure who will never get anywhere in life.

That’s certainly what society seems to think. People are shamed for not wanting to go to college or for being unable to attend if they do want to go. Let alone people who want to leave high school early; they are informed that they are throwing their lives away and ‘dropping out.’ If you do decide not to go to school, you had better be an accomplished artist or musician or writer or something to redeem yourself in the eyes of society and even then people will express amazement about having ‘gotten so far without a college degree.’

And, of course, everyone wants a job, right? Specifically a ‘good job’? People who do not want to work are lazy. Because working is empowering! Not wanting to work makes you morally suspect and questionable. Not being able to work, even when you very much want to do so, is a moral failing; just try harder! If you’re not working, you must be feeding off the government, which means that you expect the working people to pay for your existence. Should you do something like choosing to live with your parents, you are obviously not realising your full potential.

Marriage, too, is the ultimate social goal. There are no reasons why anyone on Earth would not want to marry. First comes love, then comes marriage1, as we know, so clearly, if you are not married, you are not capable of love or being loved. And, of course, everyone who does want a spouse can get married, so it’s not as though there are any legal impediments to marriage.

These are all things which people believe.

These are all things which ‘advocates’ believe. Note that it’s right there in the quote; people with Tourette’s are ‘sufferers’ and their relatives just want them to be ‘normal.’ Miller is proud of her husband for ‘succeeding’ and being a ‘role model’ and she wants other people with disabilities to ‘succeed’ in the same way. I’m sure it’s well-meant, but it comes across as yet another reinforcement of social attitudes about who is normal, who is a good person, who is worthy.

Who gets to decide who is ‘normal’? Who gets to decide which life goals we should aspire to? It’s the people who write the dominant narrative.

Let’s contrast that quote I used at the opener with a quote from someone who actually has Tourette’s, from the same article:

At a recent public appearance, Koterba met a mother and her young daughter with Tourette’s. The woman asked Koterba if her daughter would have a normal life. It broke his heart, Koterba recalled. “No,” Koterba told the girl. “You’re going to have a great life. An amazing life. A creative, beautiful, wonderful life.”

  1. No baby in the baby carriage for you, because your child might be disabled like you.

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.