Category Archives: news

Recommended Reading for June 3, 2010

Two totally adorable golden lab puppies with floppy ears, wearing blue cotton bandanas with the tag "Service Dogs."
Two totally adorable golden lab puppies with floppy ears, wearing blue cotton bandanas with the tag "Service Dogs."

Service puppies in training!!

Miami Herald – Embedded therapists protect National Guard members’ mental health

Roger Duke is a Vietnam veteran, a retired Marine lieutenant colonel and a licensed marriage and family therapist. Since 2006, he’s spent at least one weekend a month embedded with a California National Guard unit. Duke, 57, wasn’t deployed with the unit’s soldiers in Iraq and Kosovo, but he’s a trusted face whom the soldiers confide in before and after their deployments. “Some of the best conversations I have with them are at one in the morning in a Humvee during a training exercise,” said Duke, who’s part of a California program designed to help returning Guard and Reserve members by attaching mental health counselors to their units.

Threadbared – Hanky Pancreas: insulin pump accessories and cyborg embodiment [this post was so nuanced and complex and beautifully written that I hesitate to even do a pull quote because I strongly (strongly) encourage you to click through and read the whole thing]

Floeh’s designs permit wearers to make a strategic double-move around camouflage and visibility, simultaneously hiding the pump and drawing attention to its location (i.e., waist, hip, bustline). When I’m in disability-pride mode, I’m troubled by this kind of hiding, following the logic that visibility is good (i.e., wearing the pump on the outside makes us legible, shows the limits of clothes designed for bodies without peripherals, disrupts conventional, hetero feminine gender presentation) and hiding is, well, hiding, with its affective companions: shame, fear, desire for normalcy, willingness to pass.

But visibility is only one tactic among others, and hiding the pump can also be a radical act – especially if it facilitates feeling-good-while-diabetic (for example: the best act in my burlesque repertoire hinges on repurposing a strap-on harness as an under-dress pump-holder; most of the time, my solution to the dress-problem is a jury-rigged system involving a black garter with small cosmetics pouch from Benefit, bra straps, and safety pins to keep things from sliding down my leg – unless I’m already wearing a garter belt). Of course, in the case of hiding or disguising one’s pump, feeling good can also mean feeling closer to a conventional femininity and mythic norm. I don’t want to elide that possibility, but I also return to the reality of living with chronic illness: that we live in a space of contradiction, that we work with what we have & do what we need to do to claim our (sick, cyborg, incurable) bodies as desirable. In my ideal world – one I suspect Floeh wants, too – we’ll recognize that transformation can (and should) mean more than transforming the pump, or the wearer’s relation to it, to align more closely with a dominant, normate feminine ideal. Creating, enabling, accommodating, and celebrating a multitude of diabetic, cyborg embodiments — and advocating for wider access to the pump (with all of its troubling potential) for those who are uninsured and can’t afford the $6000 price tag — these are the kinds of social transformations that need to happen in conjunction with personal ones.

BBC News – Mental health research is ‘incredibly underfunded’

Only 5% of medical research in the UK is into mental health, despite 15% of disability resulting from disease being due to mental illness.  Last week, one of the major research funders, the Medical Research Council, published one of the most up to date reviews of the strengths and challenges of mental health research in the UK. It not only showed that the research that does get funded is world-class but that the UK is well-placed to lead the way in this area. The review concludes that there are several opportunities to fund more research in the UK that would help accelerate progress in developing new treatments, or lead to better ways of preventing mental illness in the first place.

7 News Denver – Is Xcel’s Tiered Rate Program A Surcharge On Disability?

Xcel Energy’s new tiered-rate program [for electricity] began Tuesday. Customers whose lives depend on electricity aren’t given an exception. Xcel users who need electricity 24 hours a day to power oxygen tanks or ventilators have to pay the same usage costs as someone who wastefully keeps on their air conditioning.”That’s what the problem is, it’s basically a surcharge for disability,” said Julie Reiskin, executive director of Colorado Cross Disability Coalition.Reiskin told 7NEWS her organization was never notified by the Public Utilities Commission prior to the tiered-rate system decision. The PUC oversees Xcel.”I was shocked we did not know about it,” said Reiskin. “It’s disturbing that the PUC saw fit to get input from Xcel, but not from the people who are directly affected by this.”

A Happiness That Forgets Nothing – You know what? I take back that shit about not hating people.

SO. My brother—my clinically depressed brother—was met by police today. You know why? Because he mentioned to his friends that he had suicidal feelings. So what did they do?
CALLING THE POLICE, TELLING THEM WHERE HE WORKS, AND HAVING HIM HOUNDED BY THEM ABOUT HIS PERSONAL FEELINGS IN FRONT OF HIS COLLEAGUES.
I am in tears right now. Enraged tears.
My brother has a mental illness. But he is still an autonomous, competent fucking person. He can make his own goddamned decisions without alleged friends having  him hunted down like a fucking criminal.

[and finally, a mystery in which I ask for your assistance! I have seen several blog mentions of this thing – product? service? – called ‘Buddy’ that has a contract with the NHS and is supposed to help people with disabilities and I cannot understand it! Perhaps you can help?]

Buddy is a post-digital social care service that seeks to improve the well-being of people living with long term conditions, and at the same time, reduce the cost of service provision. At the heart of Buddy is a social media radio which lets users broadcast from a physical device, to a range of social media platforms. By using social networks, Buddy extends the community of carers around an individual beyond healthcare professionals, to friends, families and peers. Our idea is to decentralise and socialise care, creating a more people-powered service, where friends and families are working alongside professionals to support individuals, in real time. Co-production is the jargon.

Where About Us But Without Us Leads

On 1 June 2010, E. Fuller Torrey MD wrote an op-ed column for the New York Times, “Make Kendra’s Law Permanent.” Dr Torrey is the founder of the Treatment Advocacy Center (TAC), a nonprofit group whose sole purpose is to lobby states for the passage of so-called assisted outpatient treatment (AOT) laws like Kendra’s Law in New York and Laura’s Law in California. The New York law is named after Kendra Webdale, who was killed by Andrew Goldstein in 1999.

Dr Torrey and TAC will tell you Mr Goldstein had untreated schizophrenia. They’ll tell you people like him are dangerous, they’ll tell you people like Mr Goldstein are often so sick they don’t understand they’re ill and need treatment, and they’ll tell you they know best. They won’t tell you that Mr Goldstein had been seeking treatment desperately and been turned away repeatedly.[1. Source: Time Magazine, “Will the Real Andrew Goldstein Take the Stand?”] Continue reading Where About Us But Without Us Leads

Military Docs Treat Pain in New Ways and Shame in All the Old Ways

Gentle readers! I know! I am going to worsen my hernia by reading this stuff every day! I can’t help myself! It’s like tearing myself away from a Star Wars Marathon and a free case of Guinness and Harp on New Years Eve Back when I was child free and in college! Did you ever hear about that drinking game?

Because what I really need right now is more news pounding home just how EEEEEVIIIIL drugs are and how in danger some of us are of becoming dependent on them!

Especially, WOES! Those poor servicemembers, because they would never ever have a reason to use them. Not with an almost decade of war going on in two countries and the highest rate of PTSD, suicide, TBI, and other things we have ever seen in our troops before.

Now, let me slow down for a moment, because there are some really good things going on here. This nerve blocking thing sounds pretty awesome, but I am not a medical professional of any type unless you were going by the number of dram bottles I have on hand. While I have a lot of not-so-nice things to say about the already “pins and needles” feelings in my hands and feet, I will take that in other parts of my body over what I deal with now thats-for-damned-sure. But the juxtaposition of a new therapy with the whole “drugs are bad, mmmm’kay” meme is wearing on my last pain free nerve. The shaming of opiate use is tired and older than my favorite period underwear.

As more troops return from the battlefield with chronic pain, the military has seen a spike in the number of prescriptions for opiate painkillers. More troubling, abuse of painkillers is on the rise: About 22 percent of soldiers admitted misusing prescribed drugs, mostly painkillers, in a 12-month period, according to the results of a Pentagon survey released this year.

So, how did their magical survey define “misusing”? Taking more than prescribed? One more? Two more? Because you were in MORE pain than that prescribed amount of pain managed and you were having trouble getting an appointment with your PCM to get the dosage adjusted or any other treatment? Anything beyond precisely what is on the label is “misusing” a prescription. The military has an entire month devoted to prescription drug abuse awareness…but what they don’t do much to address is the underlying need that might cause servicemembers to resort to such a thing; the fact that they might be in pain and they might not have doctors paying attention or being able to pay enough attention to them or their pain.

At the VA hospital in Tampa, all patients taking painkillers are incrementally tapered off them, Clark said.

Because chronic pain never completely goes away, the hospital’s staff emphasizes physical rehabilitation to strengthen muscles and joints near the pain source. When the injury involves the brain — as in PTSD and mild TBIs — the focus is on treating symptoms that could exacerbate pain.

“Pain may make it more difficult to treat those issues,” Clark said, because “all these things interact.”

But what about the remaining pain? The article never goes on to address what is done for that remaining chronic pain. You know, the pain that never goes away. Because we know that just sucking it up doesn’t work in patients who have chronic pain, and if all patients on painkillers are taken off of them over time…well then, what the hell is actually being done?

This new treatment sounds great for the people to whom it is available, and for the people for whom it will work, but let’s not jump ahead of ourselves and pat ourselves on the backs pretending that this is some magical solution that has suddenly rid us of the need for those nasty opiates or narcotics that are JUST. SO. BAD. FOR. EVERYONE. (You fucking addicts! I mean, c’mon, you were all thinking it!) (Right?) Dr. White is one of only six doctors who do what he does, and the article doesn’t say that the others offer his fancy treatment, nor does the article make any mention of how many civilian specialists are working on this treatment.

I worry that the VA and other military treatment facilities will look at this as a sign that they should be able to deny more patients painkillers. Progress will mean exactly nothing if it sacrifices patient care or hinders the quality of life of patients in chronic pain and with life-long illness and injury. While this article correctly talks about how chronic pain is processed differently by the brain not every uniformed doctor and military medical professional subscribes to that theory, and what the military doesn’t need right now is more doctors, medical professionals, or hospitals bragging about how all of their patients are off those evil, bad, no good drugs without offering them real help.

Recommended Reading for June 1, 2010

fiction_theory (LJ): The internet IS real life

The problem with impeaching someone’s anti-racism based on attendance at a specific march or even public rallies and protests in general is that it assumes that a) attending such events is a more real, valid, and important means of expressing anti-racism than any other means, specifically online and b) that attendance is a feasible option for everyone.

Marching at a rally or attending a protest is all well and good, but it’s not something that is an option for everyone. It’s quite ablist to ask such a question as though the privilege of being able to attend excludes the antiracist work of those who use other venues.

Mattilda at Nobody Passes: Closer

Somewhere between sleep and awake, a new day and last night and tomorrow, like they’re all in a circle around me but I’m somewhere in bed where I can almost read the sentences except they blur away from me, and I keep thinking maybe sleep, maybe this is more sleep except I don’t know if I want more sleep.

thefourthvine (DW): [Meta]: The Audience

I will not bring up my disability, because I don’t talk about it here, except to say that if that part of me appears in a story, it will be as either a clever gimmick (and a chance for a main character to grow as a person) or a sob story (and a chance for a main character to grow as a person). (No, there will never be a main character just like me. Most of the time I think that’s normal, and then I look at, say, SF and think standard-issue straight white guys must have a whole different experience on this issue. How weird would it be, to have basically all mainstream media written for you like that?)

Ian Sample (at The Guardian online): Bone marrow transplants cure mental illness — in mice

The team, led by a Nobel prizewinning geneticist, found that experimental transplants in mice cured them of a disorder in which they groom themselves so excessively they develop bare patches of skin. The condition is similar to a disorder in which people pull their hair out, called trichotillomania.

lustwithwings at sexgenderbody: Do I Owe Everything I am to The Internet?

Despite their lack of a body, my friends are still quite active in the world of Social Networking which acts on the physical world in much the same way things on our mind do. The contents of the Internet affect the physical world through many of the same processes as the contents of a mind, yet the contents of the Internet as a public mind can affect many more minds, and many more bodies than a private mind.

Ableist Word Profile: Crazy (to describe political viewpoints or positions)

  • Ableist Word Profile is an ongoing FWD/Forward series in which we explore ableism and the way it manifests in language usage.
  • Here’s what this series is about: Examining word origins, the way in which ableism is unconsciously reinforced, the power that language has.
  • Here’s what this series is not about: Telling people which words they can use to define their own experiences, rejecting reclamatory word usage, telling people which words they can and cannot use.
  • You don’t necessarily have to agree that a particular profiled word or phrase is ableist; we ask you to think about the way in which the language that we use is influenced, both historically and currently, by ableist thought.
  • Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

We just ran an ableist word profile on the word “crazy,” written by the lovely guest poster RMJ, who discussed how the term is used in a variety of contexts and situations. This follow up is sparked by what I’ve seen as a recent resurgence here in the United States in use of the term in a political context, to describe or characterize an individual with a particular set of political views. Every time I see it, it grates on me, and I thought it was worth a focused discussion here at FWD.

Before I begin, I should make clear that I personally identify as “crazy” sometimes. Not always, but when the depression gets overwhelming and I can tell my thoughts are getting tangled, or especially when I’m in the grips of a manic episode. (More accurately, I identify as a “crazy bitch,” but that’s neither here nor there.) I’ve also been consistently described by others as “crazy,” in contexts ranging from affectionate to outright hostile and dismissive. So when I see this term tossed around in the media, it feels personal to me.

And it’s been tossed around a whole lot lately, largely by traditionally liberal or progressive media outlets. I first started seeing it show up at Talking Points Memo, Josh Marshall’s blog that combines “breaking news, investigative reporting and smart analysis.” Marshall doesn’t mention it on the site, but it also contains a big heaping spoonful of ableism with that political analysis. Here are some recent examples:

This is just a sampling of the posts with headlines including the term “crazy” and is not at all comprehensive. Even within this sample, we can see that the term is used to describe viewpoints with which TPM does not agree (like revising history textbooks or arguing, like Gaffney, that the Pentagon logo indicates a secret plan to subject the United States to Shariah law) and thinks are biased, bigoted, racist, or otherwise offensive (such as the protests about Obama speaking to schoolchildren or the racial laws in Arizona).  None of the posts, though, engage or critique those viewpoints or speakers in a substantive way – simply describing them as “crazy” is seen as self-evident and no further discussion is needed to demonstrate these views or people should be excluded from reasonable political discussion.

There’s been an even more recent explosion of use of the term to describe Rand Paul and Paul’s views, after he won a Republican congressional primary in Kentucky.[1. An earlier version of this post had stated, in error, that Dr Paul won the Republican congressional primary in Virginia. Thanks, Katie, for the catch.] Paul favors the free market and freedom of private business, to the extent that he seems to believe that anti-discrimination laws are an unreasonable restriction on businesses. Now I am no fan of Mr. Paul – and wrote about my problems with him previously on FWD – but that doesn’t mean I approve of political cartoons like this:

A political cartoon portrays Rand Paul as the Mad Hatter from Alice in Wonderland. Added to the original Tenniel illustration are a 'Don't Tread on Me' flag, a Rand Paul button, and an I Heart BP button.
A political cartoon portrays Rand Paul as the Mad Hatter from Alice in Wonderland. Added to the original Tenniel illustration are a 'Don't Tread on Me' flag, a Rand Paul button, and an I Heart BP button.

To my mind, characterizing Rand as “mad” or “crazy” and not saying anything further is a lazy way to dismiss him and his ideology without actually having to engage with it. There is a lot to say about Rand’s ideas: how prioritizing private business over human rights preserves existing institutional structures that will continue to perpetuate racism, sexism, ableism, and other oppression if not checked by a larger force like the government; how the line between private and public realms is a lot fuzzier and less distinct than Paul implies it to be; that the Gulf of Mexico oil spill and BP’s seemingly inadequate safety protections and near complete inability to effectively respond are strong indications that business will prioritize profits over public goods like environmental safety; how an attitude of business before anything else will influence Rand’s views on everything from the minimum wage to immigration policy to climate control to internet neutrality. Those are all important discussions to have, discussions where we can’t assume that everyone in the audience will come down on the same side, but calling him “crazy” or “mad” and leaving it at that elides all of those complicated issues. Even more strongly, it implies that those discussions are not even worth having because it is so evident that the views or person being dismissed are wrong and absurd and laughable.

In Newsweek, Conor Friesdorf made an interesting observation about the policies and people who are dismissed as “crazy”:

Forced to name the “craziest” policy favored by American politicians, I’d say the multibillion-dollar war on drugs, which no one thinks is winnable. Asked about the most “extreme,” I’d cite the invasion of Iraq, a war of choice that has cost many billions of dollars and countless innocent lives. The “kookiest” policy is arguably farm subsidies for corn, sugar, and tobacco—products that people ought to consume less, not more.

These are contentious judgments. I hardly expect the news media to denigrate the policies I’ve named, nor do I expect their Republican and Democratic supporters to be labeled crazy, kooky, or extreme. These disparaging descriptors are never applied to America’s policy establishment, even when it is proved ruinously wrong, whereas politicians who don’t fit the mainstream Democratic or Republican mode, such as libertarians, are mocked almost reflexively in these terms, if they are covered at all.

What I conclude from that is that the media doesn’t consistently use “crazy” and other ableist terms to refer to absurd policies or those that lack rational support, but instead reserves those terms for people outside of mainstream politics. Which in turn implies that the term is used primarily to further marginalize and dismiss people who don’t fit expectations of what a politician is or what are common or popular political arguments. To me, this is even more evidence that the implicit subtext of terming a person or policy “crazy” is “shut up and go away, or start blending in better.” Which, again, is exactly the message leveled at people with mental illness when they’re called “crazy” or “loony” or “unhinged” or any number of synonyms.

This selective usage is even more reason the term “crazy” shouldn’t be used in the political context – partly because it’s a lazy out for commentators who refuse to engage with the actual policy issues or political ideas being proposed on a substantive level, and partly because it fiercely underlines and reinforces marginalization and dismissal of people with mental illness. It reminds me that when people call me “crazy,” what they really mean is “stop existing in my consciousness – either disappear or become normal.” To see progressive writers and organizations rely on the marginalization of people with mental illness to score easy points against unpopular politicians is upsetting not only because of their perpetuation of ableism, but also because it puts me in the extremely uncomfortable position of defending people like Palin and Paul against this kind of criticism.

Recommended Reading for I Can’t Believe May is Almost Over!

I mean, where does the time go?!

A dark body protrudes from the left, with many thin tendrils along it, showing orangey red.
A dark body protrudes from the left, with many thin tendrils along it, showing orangey red.

Second-harmonic generation microscopy image of a primary cultured Aplysia neuron stained with the membrane dye DHPESBP. The signal is modulated by membrane potential and was found to be capable of recording action potentials with 0.6 µm and 0.833 msec spatiotemporal resolution. The high-resolution and deep tissue imaging capability of this nonlinear microscopy technique should prove valuable to future electrophysiology studies. (Journal of Neuroscience) [Not entirely sure what all that means, but I find the brain endlessly beautiful and fascinating.]

Diary of a Schizophrenic – Little Girl

I am writing this to you because I want you to remember.  I want you to remember that you love unicorns and crystals, pinned butterflies and christmas beetles, love hearts and sea shells, sequins and puppy dogs. You feel special you have your ears pierced even though you are only six and you already know Santa isn’t real.  You love fairies but don’t tell many people because you are tough and like playing with the boys. You can catch and throw a ball and love to dance.  Dressing up will always be your favourite even when you’re big. Even though somewhere deep in side, you are sad, you love a lot and you see beauty everywhere.  You are smart and quick and can already talk the tail off a donkey.  You question everything and most people do not realise your careful quiet soul. One day, when you are older, you are going to lose your mind.

Pulse Media – For Enlightened White Guys [a useful set of tips for anyone participating in a group in which they have privilege]

5a. Count how many times you put your ideas out to the group.
5
b. Count how many times you support other’s ideas for the group.
6
. Practice supporting people by asking them to expand on ideas and dig more deeply before you decide to support the idea or not.
7
a. Think about whose work and contribution to the group gets recognized.
7b. Practice recognizing more people for the work they do and try to do it more often.

Boston Herald – Disability Group Faults Massachusetts on Water Crisis

An advocacy group for the disabled today filed a federal civil rights complaint with the Department of Justice over the state’s handling of a drinking water crisis earlier this month. The complaint made by the Disability Policy Consortium says the state wasn’t prepared to adequately respond to the needs of disabled and elderly people when a water main break left nearly 2 million eastern Massachusetts residents under an order to boil their water for several days.

All Africa – Nigeria: Yuguda Makes Case for Children With Disabilities

FIRST Lady of Bauchi State, Hajiya Abiodun Isa Yuguda and Founder, Challenge Your Disability Initiative, CYDI, yesterday at 2nd Vanguard Children’s Conference, called on corporate organisations across the country to learn to include children with disabilities in their programmes as part of efforts to show love and care to such group in the society. Addressing the children at summit held as part of exercise to mark this year’s Children’s Day celebration, Mrs Yuguda said children with disabilities should not be left out in programmes, particularly, programmes that would help shape their lives as future leaders.

AP – Spike in Disability Claims Clogs Overloaded System

Nearly 2 million people are waiting to find out if they qualify for Social Security disability benefits. It will be a long wait for most, even if they eventually win their cases. The Social Security system is so overwhelmed by applications for disability benefits that many people are waiting more than two years for their first payment. In Ohio, Michigan, Minnesota and other states, the wait can be even longer.

Penhurst Asylum Archives. No excerpt, just a recommendation to browse the astonishing range of original source documents available at this archive of Penhurst State School and Hospital, which was surrounded by and eventually closed in response to allegations of abuse and neglect. A lawsuit after the facility closed led to a Supreme Court decision establishing that people who are involuntarily confined are entitled to “reasonably safe confinement.” The site is a testament to those who were subject to conditions that nobody could call reasonably safe. There’s some interviews and personal accounts, papers documenting problems at the hospital, and even redacted patient reports.

Why I Am Not a Libertarian

Here in the U.S., there’s been a lot of buzz about Rand Paul, son of Ron Paul, winning the primary for Republican senator in Kentucky. Paul is a darling of the Tea Party and largely espouses libertarian values of decreased taxes and decreased government regulation and intervention.

There are some things about libertarianism that I like and agree with. I’m against state interference in romantic and/or sexual relationships between consenting individuals with full capacity. I’m in favor of strong civil liberties and freedom from search or surveillance by the state.

But I do not trust the free market to take care of civil rights issues, primarily because I’ve seen the free market fail to take care of civil rights issues for hundreds and really thousands of years. And I believe that getting the government out of the business of defining and enforcing civil rights would have disastrous results for all but the most privileged among us. And Rand Paul’s espoused views bear that out. Here’s what he’s got to say about LGBTAI rights and women’s health:

Not only is Paul perfectly fine with government prohibiting marriage between gays and lesbians, it bears mentioning that Paul’s anger towards the government for “betraying the medical privacy of ordinary citizens” doesn’t extend to women, whom he believes should be forced to carry unwanted pregnancies to term if state legislators deem it so. He also wants to offer legislation “restricting federal courts from hearing cases like Roe v. Wade.”

This isn’t even a consistent position – Paul is in favor of government intervention in personal relationships, as long as it’s “only” LGBTAI relationships. He’s also in favor of government intervention in personal medical decisions, as long as it’s “only” affecting the decisions of women considering whether to terminate a pregnancy. What he has to say about protections for people with disabilities is even more troubling:

You know a lot of things on employment ought to be done locally. You know, people finding out right or wrong locally. You know, some of the things, for example we can come up with common sense solutions — like for example if you have a three story building and you have someone apply for a job, you get them a job on the first floor if they’re in a wheelchair as supposed to making the person who owns the business put an elevator in, you know what I mean? So things like that aren’t fair to the business owner.

Yes! Let’s let the free market take care of rights for people with disabilities! Because it’s for damn sure that even with the existing governmental protections for civil rights, companies are taking an unbiased and totally not ableist at all approach to employing PWDs and even accommodating them as customers! So eliminating those marginally adequate and woefully underenforced protections would surely have the effect of enhancing overall liberty and freedom! That is, if you are looking only at the liberty and freedom of the already privileged.

There has been a lot of discussion on this site of how entrenched institutional ableism results in discrimination against PWDs, makes them more likely to live in poverty, lack employment, and have disproportionately negative health outcomes. That’s the status quo that would be preserved if government intervention and regulation of the rights of PWDs were to end. But there are definitely people who are benefiting from the status quo – white, cis, hetero, TAB men, predominantly. And we should be very clear that limiting government intervention would primarily preserve the status quo that benefits them.

Which is why you should not be surprised by two facts: 1) Rand Paul is a white cis hetero TAB man, and 2) I strongly disagree with these political ideas. While there are some areas in which I support limiting government intervention, my overall goal is to maximize rights of historically disadvantaged and relatively unprivileged populations, whether it takes more or less government to reach that end.

Jenny McCarthy & Autism Part III: Spokesperson

This is the third and final part of my discussion about Jenny McCarthy. Part I was If We Shame Parents Enough Maybe Autism Can Be Cured, and Part II was Let’s All Be Normal (Acting).

Writing this last post has taken me a very long time, both because of my anger at the way autistics are talked about rather than talked to, or with, or given the opportunity to talk for themselves; and because I keep going over what I have to say here and wondering what makes me think I’m qualified to say it.

I’d like to go back for a moment to the article that started me on this: Jenny McCarthy says her son Evan never had autism.

Actually, let’s just go back to the final sentence: “And though her son may never have had autism, Jenny insists, “I’ll continue to be the voice” of the disorder.”

The way I see it, one of two things is true:

1. Jenny McCarthy cured her son of Autism.
2. Evan never had autism in the first place, but may have had another syndrome, or have been developmentally delayed and “caught up”.

In either case, Jenny McCarthy is not currently the mother of an autistic child.

Tell me – why is Jenny McCarthy the “spokesperson” for “the disorder”? According to her no one in her personal life has it.

Not even delving into the bit where it’s incredibly different to be speaking for and about those who live with autistics and those who actually are autistic, I’m not entire certain what insight McCarthy is offering anyone. The idea that autism is like your child’s soul going away? That the best metaphor for autism is a bus accident? She describes a diagnosis of autism as the worst thing that could happen, and she’s going around and doing the talk shows and is the “spokesperson for the disorder?” How does that even make any sense?

That’s why this post has taken me so long to finish. Every time I start it, I wonder why the hell I’m writing it, instead of pointing people towards the writing of actual autistics.

[Here is a tiny sample:

Just a tiny tiny sample. Each one has a blogroll. There are lots of autistic bloggers, including kaninchenzero and s.e. smith here at FWD. This tiny sample is just meant to be that. I encourage people to leave more links, including to their own blog, in the comments.]

The Times article argues that Jenny McCarthy peddles hope.

Well, here’s my hope: That in the future, autistics will be invited to speak for themselves.

Recommended Reading for May 13, 2010

Jacquelyn Palmer-Boyce lies on her back, wearing a yellow t-shirt and jacket and a yellow bandana on her head, surrounded by dandelions for MCS Awareness Month. ©2010 John Boyce

Photo via The Canary Report, who writes: “Heralding MCS Awareness Month, profile photos radiating the warmth and vibrancy of yellow are popping up throughout our community on Facebook and on our network. Yellow, for those of us with Multiple Chemical Sensitivity, symbolizes the canary in the coal mine, with which we all identify. Our identity as a canary embraces and honors our bodies’ wisdom, and uses our song to alert the world of the menacing dangers of toxic consumer goods and a polluted planet.”

Alexandra Lammers and Eric Hoyle, she in a wedding dress with a festively decorated cane and he in a morning suit exit the church after their wedding.
Alexandra Lammers and Eric Hoyle, she in a wedding dress with a festively decorated cane and he in a morning suit exit the church after their wedding.

Photo from The New York Times Vows article about Lammers’ and Hoyle’s wedding. While Lammers was using a cane due to an injury, rather than a disability, it was still nice to see a mobility aid in the New York Times like this.

Disability Scoop – Disability Advocates Reserving Judgment on High Court Nominee

Disability advocates were hesitant to say much about [nominee to the United States Supreme Court Elena] Kagan. Without a judicial record, they said little is known on her positions regarding disability rights law. “I think her hearings are going to be important,” Louis Bossing, senior staff attorney at the Bazelon Center for Mental Health Law, said of Kagan’s upcoming Senate confirmation process. “We’re going to spend time working with the judiciary committee so the senators can ask questions we’ll need to know whether to support or oppose her nomination.”

The New York Times – When Treating One Worker’s Allergy Sets Off Another’s

On the first day Ms. Kysel took Penny, [her allergy-detection service dog] to work, one of her co-workers suffered an asthma attack because she is allergic to dogs. That afternoon Ms. Kysel was stunned when her boss told her that she could no longer take the dog to work, or if she felt she could not report to work without Penny, she could go on indefinite unpaid leave. She was ineligible for unemployment compensation because of the limbo she was put in.

Ghana News Agency – Women with disabilities demand respect from society

Women with disabilities in the Upper East Region has called on society not to see them as liabilities but help empower them so they could take care of themselves. They complained that many people regarded them as a curse to their families and did not want to associate with them especially in issues of marriage. They explained that when they receive marriage proposals the potential groom’s family would usually argue that the disabled woman would join the family with her curse and discourage their son. These concerns were raised at a meeting of the Association of Women Living with Disabilities, held in Bolgatanga, to discuss their situation and find ways to make things better for their members.

MB the MD/MC – on (dis)ableism

I have a lot of people in my family with disabilities, though none of them would consider themselves disabled. In talking with another radical woman of color, it seems that disability is so the “norm” in our communities, it’s often not marked as an identity unto itself. I often wonder about what a release it might be for women of color to see disability as a framework that intersects with race and gender, to not always feel the need to keep fighting, even when it hurts, to let go of the ways that we as cis and trans women of color in particular, have taken up ableism in ways that reproduce harm to ourselves and the communities we “work” so hard and care for. Why does disability mostly look white?

Associated Press –Feds Sue Over Treatment of Disabled in Arkansas

The federal government accused Arkansas in a lawsuit Thursday of leaving people with severe mental or physical disabilities with no choice but to go into state institutions. The Justice Department lawsuit accused Arkansas of a “systemic failure” that places people in institutions when the state should pursue less restrictive avenues for their care. “The state gives individuals with developmental disabilities the draconian choice of receiving services in segregated institutions or receiving no services at all,” the lawsuit states. The federal government accused the state of violating the Americans with Disabilities Act, which guarantees people with developmental disabilities the right to live in the most appropriate setting for their needs. The state has six centers for the developmentally disabled that, in all, care for about 1,100 people.

A faded street sign reading 'CAUTION DEPRESSION AHEAD' is in focus with a blurry background of escalators.
A faded street sign reading 'CAUTION DEPRESSION AHEAD' is in focus with a blurry background of escalators.

Photo credit unknown, seen at Nowhere Pixie.

Recommended reading for May 4, 2010

RMJ: Disability and birth control, part 1

Widespread (rather than individual) centralization of birth control in feminism alienates and marginalizes their already problematized bodies: trans women, intersex women, older women, women with disabilities that affect their reproductive system, asexual women, women who want to get pregnant. Not to mention the loaded history of otherwise non-privileged bodies with birth control in light of the eugenics movement.

Eugenia: Siempre eqivocada

The fact is that, with regards to medical care, the old customer service adage is reversed: if the customer is always right, in Bolivia, the patient is always wrong. In Bolivia, where higher education is less of a universal right than a luxury for the few, poorer, uneducated Bolivians are taught to treat doctors and other professionals as their superiors.

meowser: BADD 2010: The Total Erasure of Partial Disability

In order to “make it” at anything I thought was worth doing, you had to be willing to do some serious OT, put in the extra time, go the extra mile, get that extra degree while still working full-time, put your nose to the grindstone. In other words, prove you weren’t just some lazy slacker who didn’t want to work. And I knew I…just couldn’t. And I felt terrible about that, especially when I got into my 30s and realized that all those overworked, underpaid copy editors (and other people who had done the nose-to-the-grindstone thing) now had real careers making real money, and I was still stuck at the McJob level.

Jha: My Invisible Disability

My depression is a setback. It means I cannot be continuously gung-ho about things like I would like to be. It means that sometimes I have to withdraw from the world or be overcome with exhaustion. I am easily fatigued. Some days, I want to sleep in the entire day and not have to face the world. Other times, I imagine being in a situation where I wouldn’t have a tomorrow to deal with. This doesn’t make me a failure, and it doesn’t make me, or anybody else like me, any less of a person deserving basic respect and consideration.

Latoya: Open Thread: Science, Conclusions, and Assumptions

[O]ne of the most common requests for content on Racialicious tends to come from people who work in public health. One issue in particular they have asked me to spotlight is the issue of clinical trials. For many years, the assumption was that the effects of medical conditions and medicine side effects would be similar on everyone, even though the only people involved in clinical trials were white males.

Valerie Ulene (Los Angeles Times): When prescribing a drug, doctors have many choices — too many, in some cases

Nobody wants to be told that he or she has a medical problem that can’t be treated, that there’s no medication that will help. For most common ailments, that’s rarely a problem; the trouble comes instead when it’s time to choose a drug. Sometimes there are just too many choices.

And, of course, there are numerous posts from BADD 2010, organized and collected by Goldfish at Diary of a Goldfish!