Tag Archives: medical practice

Recommended Reading for 24 December, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

The Broken of Britain: The GP’s Story by Dr Jest

So there you have it. Neither Pete nor Dud would have chosen to be where they are now, and neither has asked not to work when they were capable. Indeed both have rather struggled on when reason would have suggested they ought not. And I could name you a dozen others in a similar position. All present talk of making it more profitable to work than rely on benefit may sound very noble and high minded in the marbled halls of power, where hard graft means having a lot to read and a few late meetings to go to. It completely misses the enormous efforts made by the likes of Pete and Dud to keep going against the odds, and any move to impoverish them is little short of scandalous and should be relentlessly pointed out for the evil narrow minded bigotry it is.

Sarah at Cat in a Dog’s World: PWD and TSA

From information I’d heard from TSA administrators, I thought that the body scanners would reducethe need for physical pat-downs. Little did I know that TSA would use the new technology as an excuse to conduct more invasive pat-downs! It is obscene, especially when one considers that many people with disabilities don’t have any “choice” at all. If someone is unable to stand independently for ten seconds with their arms up, or if one wears any number of medical devices or prostheses…there is no “choice.” (And no, for many people, “don’t fly” is not a realistic choice.) There is, additionally, reason for concern about the radiation from the body scanners, particularly for cancer survivors and people who have a genetic predisposition to cancer. It is now pretty clear that body scanners, far from being a panacea, are making things worse. And people with disabilities are being affected disproportionately.

At Spilt Milk: Thanks for your help, doctor.

Make no mistake: I know that this only happened to me because I am fat. If I were a thin person and I walked through his door with the symptoms I described, he would have been forced to dig deeper. To ask me more questions, to hopefully come up with a wider range of options. Maybe run more tests.

United States: Megan Cottrell at ChicagoNow: Got a disability? You’ll see the difference in your paycheck

A lot of people might assume that if you have a disability, you might not make as much money as someone without a disability. But how much less? How hard is it for people with disabilities in Illinois to get by compared to their neighbors?

India: An unnamed special correspondent at The Hindu: Social barriers keep the disabled away from workforce:

Persons with disabilities are the last identity group to enter the workforce, not because their disability comes in the way of their functioning, but because of social and practical barriers that prevent them from joining work, a study on the ‘Employment Rights of Disabled Women in India’ carried out by the Society for Disability and Rehabilitation of the National Commission for Women (NCW) has said.

Guillermo Contreras at Chron.com: State sued over care for disabled Texans

The federal lawsuit, filed Monday in San Antonio, alleges the state isn’t providing some mentally and physically disabled Texans the opportunity to move into community-based settings, which advocates say are less restrictive and more rehabilitative than nursing homes.

Lastly, here’s a transcript of a story on Australia’s 7.30 Report program called Setting Sail:

Known as the ‘Everest of sailing’ the Sydney to Hobart race challenges the most seasoned of yachtsmen on what can be a treacherous ocean voyage.

Most of the focus is on the big maxi-yachts competing for line honours. But a unique crew of blind and deaf sailors is also commanding attention.

The charity organisation, Sailors With Disabilities, has been gifted a half-million dollar fast yacht, making them eligible for the first time in the prestigious Rolex Cup.

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Recommended Reading for October 12, 2010

Darshak Sangavi at Slate: Should you crowdsource your medical problems?

To be sure, many patients with complex or poorly understood medical problems like amyotrophic lateral sclerosis congregate in large virtual communities such as PatientsLikeMe, where they share details of their medical treatments and symptoms with each other—and occasionally even launch their own unregulated and informal drug trials. These communities provide some helpful information and support for many people.

brigid at Feminists With FSD: On the FSD hierarchy and why it hurts all of us

A lot of support groups, both on and off the web do not want to recognize women with conditions such as endo as legitimate cases of fsd. We don’t have vulvodynia, vulvular vestibulitis, or vaginismus so we couldn’t possibly go through the same things as women with those conditions. I’m here to change that misconception.

Michael Janger at Abled Body: Web Content Accessibility Law Needs More Brawn

However, the newly accessible video content is only the tip of the iceberg. The major broadcast and cable networks that are covered under the new law produce about 100,000 hours of video content a year from their TV programs. On YouTube — which is not covered by the new law — almost 13 million hours of video content are uploaded annually, and that number is increasing. Over 99% of this Web-exclusive content is not closed-captioned or video-described, nor will it be required to be, under the new law.

Flash Bistrow at Where’s the Benefit?: DLA and work? Who is confused here?

The government has already said that the new medical test is intended to reduce the number of DLA claimants by 20%. But I am not sure how taking benefit from 1 in 5 people will “reduce dependency” (on what?) and “promote work” – indeed, several of the people quoted in my previous article about DLA would have to stop working if they lost that benefit, because they do not have enough energy or capacity to both care for themselves AND go to work. If the government think that turfing disabled people off DLA will suddenly give them the capacity to work, they are very much mistaken. It will just disable them even further.

Sam Roe and Jared S. Hopkins for the Los Angeles Times and Chicago Tribune: The final hours of Jeremiah Clark (major trigger warning for discussion/descriptions of abuse and neglect)

Jeremiah is among 13 children and young adults at the North Side facility whose deaths have led to state citations since 2000, a Tribune investigation has found. Some of these deaths, records show, might have been prevented had officials at the facility taken basic steps, such as closely monitoring residents and their medical equipment.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Reactions, part 1

[Warning for somewhat graphic discussion of medical procedures and adverse allergic reactions.]

I have been dealing with weird, severe, and inexplicable allergic reactions since the age of 14.

Most of these reactions have been to food items; my known food allergies include peanuts, various tree nuts, and (wait for it) green bell peppers. Of course, I take great caution to avoid these foods and my exposure to them. Unfortunately, with my immune system, such caution is no guarantee that I won’t have an “attack” out of the blue.

The first “attack” I had, in fact, was one of those not caused by food. I was a teenager at the time, in Paris on vacation with my family. I don’t remember much about my initial symptoms other than I felt overly-warm very suddenly, and decided that it would be a good idea to take a cold bath in order to rectify the situation. My mom found me in the bathroom of our rented apartment, facedown on the tile floor and missing several items of clothing. I had figured, somehow, that putting my face on the tile floor as a method of cooling down would look less weird than sticking my entire head into the freezer. My face, which had initially turned bright red, swelled up so much that I soon found myself unable to see. I had quickly begun to resemble the Bob’s Big Boy logo; I should note here that if you ever start to resemble a famous food-related logo, you should probably go to the nearest hospital post-haste.

My Bob’s Big Boy transformation was quickly followed by giant, blotchy pink hives that appeared on my neck and shoulders. Joining the party somewhat late was a hot, almost volcanic feeling in my lungs that quickly morphed into breathing trouble. Severe breathing trouble. So my family (my mom, my dad, and my younger brother — who suggested that I not look at myself in any reflective surface so as not to become more freaked out) and I took to the streets of Paris in search of a hospital. We found one — after a quick visit to what we thought was a hospital but which actually turned out to be a convalescent home. At the ER, the staff took one look at me and immediately put me at the front of the queue; I was quickly whisked away to a magical land where a nurse tried to calm me down, completely in French, when I loudly protested the insertion of a large IV needle into the underside of my forearm. The only English-speaking doctor on staff, as it turned out, was on his day off, but came in to examine me and assure my family that I was going to be okay.

When we came back from vacation, I had another attack about a month later. And then another. And a few more, until one ER doctor suggested that I get a full round of allergy tests, more commonly known as “scratch tests.”  The scratch tests revealed a substantial peanut and tree nut allergy. I took care to avoid these foods, or any foods that may have come into contact with them. Unfortunately, I still kept having attacks, even when I avoided the dreaded peanuts and tree nuts. I still have them, approximately once every 3-4 months.

Sometimes, I get them as a result of cross-contamination if I eat at a restaurant. Sometimes, I get them for no reason at all — even if I haven’t eaten for a while. The symptoms tend to be fairly consistent: first, a scratchy feeling will start in my throat and lungs, followed by wheezing. Then comes breathing trouble, which tends to feel like an elephant is standing on my chest. Usually, my eyes will then swell up to the point that I cannot open them all the way, or see. Sometimes, I get gastrointestinal trouble as well, the symptoms and signs of which are not things that I can discuss in polite company due to general grossness and/or TMI.

The first five to ten minutes of these attacks are, generally speaking, the worst part(s). By now, my battle plan for dealing with these attacks is well-established: Take a shot or two of my inhaler at the first signs of trouble (usually breathing difficulties plus another symptom), then four or five antihistamine pills. Of course, it takes a few minutes for these things to kick in, which is part of why the “waiting” part is so physically painful. During these first few minutes, I am in some sort of hellish allergy-limbo: it feels like someone or something has put some bricks on my chest and torso, I can’t see or can barely see, and it feels like my intestines are being vacuumed out of me — and the only thing I can do is wait for the medication to start working. I generally consider myself to be a patient person, but nothing will sap your patience like having to wait out a potentially life-threatening medical emergency.

And if that doesn’t work, I have to go to the next level, which is using epipenephrine, a self-contained steroid shot to be injected into the thigh in case my breathing is so severely compromised that I pass out or am in danger of not getting enough air into my lungs.

For these sorts of attacks, there is really no pat, inspirational or life-affirming end, so much as a screeching halt after the medication actually starts working. And this total lack of inspiration or an end in sight is also reflected in some of the responses I have gotten from many abled people in regards to my “allergy issues” (to be addressed in part two).

Recommended Reading for September 7, 2010

Lisa Harney at Questioning Transphobia: QT and Posting and My Inability to be Consistent

Oh, and a lot of neurotypicals learn about ADHD symptoms, and they think “I lose my keys sometimes? I lose my train of thought! I miss deadlines!” And you know, it’s true. Everyone does these things occasionally. But the difference is that you do not do them every. single. day. This isn’t what your life is like, this is when you have a bad moment – you’re tired, overwhelmed, in a hurry, and bam, a thing happens. This is what life is like every day for ADHDers, and when we’re tired, overwhelmed, in a hurry, then it’s that much worse for us. So, I can understand if you relate to these symptoms? I’m sure most people do. But don’t generalize how you experience them (as not-symptoms, assuming you do not have some other condition that causes similar symptoms – or you’re not an undiagnosed ADHDer yourself) to how I experience them (as symptoms). For me, they are a daily impairment.

K__ at Feminists With FSD: Book review — The Camera My Mother Gave Me [trigger warning for sexual assault]

The negative reviews usually contain some variation of gross-out due to TMI or frustration with Kaysen’s lack of progress in treating her pain medically. It’s TMI and gross because vaginas and vulvas are generally considered vulgar and gross – at least outside of feminist circles – sometimes even within feminist circles, because don’t talk about vaginas too much or else you reduce yourself to a big walking vagina – and thus it’s a shock to read such frank language and descriptions about the vagina.

Tammy Worth for the Los Angeles Times: Mental health parity act may affect your medical benefits

Other provisions of the bill require out-of-network coverage for mental health services, parity of coverage of medical and mental health medications, and if someone is denied coverage of a mental health service that is deemed medically unnecessary by the insurer, patients have the right to find out why.

Andrew Palma for the Golden Gate [X]press (San Francisco State University student newspaper): University loses scholar, activist

Longmore is arguably most well known for his 1988 protest outside the Social Security Administration’s Los Angeles office. He burned his book about George Washington, written word by word with a pen in his mouth and a keyboard, to protest policies that penalized disabled writers for counting royalties from their work as earned income.

Adrian Morrow for the Globe and Mail: Efforts to battle chronic pain found lacking

Some 80 per cent of people around the world who suffer from chronic pain can’t get the treatment they need and governments must step up their efforts to tackle the issue, says Michael Cousins, an Australian anesthetist and the driving force behind the first International Pain Summit [. . .] Earlier this year, he had a hand in drafting a national pain management strategy for Australia – the first in the world – and the summit, which takes place in Montreal on Friday, will draw up guidelines to help other countries follow suit.

Recommended Reading for Wednesday, 21 July 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 wheelchair user competing in a marathon, caught in the act of leaning forward for more power.

Photo by Flickr user widdowquinn, Creative Commons License.

Cathy Heffernan at The Guardian: Comment is Free: Stop stonewalling deaf jurors

When I received a jury summons a few years ago, I opened it up excitedly, conjuring up scenarios casting myself as a female version of Henry Fonda in 12 Angry Men, heroically leading my jury through society’s murky prejudices to deliver a landmark decision and liberating an innocent in the process. (I had a rather romantic notion of jury service back then.)

But something stopped me in my tracks. I saw that deaf people were included among “incapable persons” under the list of ineligible people. I was stunned. I’d just graduated from university and yet here I was, considered by the Irish court system as “unfit to serve on a jury”. What’s more, I was expected to meekly sign this summons and return it – in other words, agree to their exemption.

Dr. Rob at Musings of a Distractible Mind: A Letter to Patients With Chronic Disease

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain – is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

Oregon Health and Science University: Racism Shapes African-American Women’s Views on Depression Care (via Racialicious)

“These women were extremely wary of most depression treatments and providers they associated with ‘White’ systems of care. Although they acknowledged that violence, depression and substance abuse adversely affected their health, discussions about health care revolved around their perceptions of racism,” said Christina Nicolaidis, M.D., M.P.H., principal investigator and an associate professor of medicine (general internal medicine and geriatrics), and public health and preventive medicine in the OHSU School of Medicine. “Based on our findings, we recommend health and mental health providers endeavor to better understand and acknowledge how racism informs the experiences and perceptions of their patients.”

The expectation of being a “strong Black woman” also was a significant barrier to recognizing depression and seeking care. Co-investigator S. Renee Mitchell has used this finding to launch a campaign asking: “Strong Black woman – what are you burying, your feelings or the myth?” The research team also has organized several community depression and violence awareness events titled “Redefining the Blues.” An additional event is planned for the fall.

Kai Wright at Colorlines: HIV in Poor U.S. Neighborhoods as Intense as Developing World

The first is straightforward: Poverty and HIV are tied in the U.S. To establish this fact, researchers looked at HIV prevalence, or the share of a given population that is infected. They found HIV prevalence in high-poverty neighborhoods to be more than double that of the nation overall. Moreover, within high-poverty neighborhoods, prevalence among people living below the poverty line was double that of those living above it. If silence equals death, so does poverty.

The study’s focus on heterosexual adults is significant and generates the second important finding: that epidemics in poor U.S. neighborhoods are of similar intensity as those in poor nations globally.

Ames Alexander at Charlotte Observer: Advocate for mentally ill to meet Obama

“The president wants to mingle and meet and talk to people with disabilities where the law has made a difference in their lives,” said Andrew Sperling, director of legislative advocacy for the National Alliance on Mental Illness (NAMI), a leading group for those with psychiatric ailments.

Cian O’Luanaigh at The Guardian: Comic superhero Echo fights stereotypes of deaf people

Echo uses both American Sign Language (ASL) and a Native American system developed for communication between tribes speaking different languages. The sign systems appear throughout the comic, both when Echo is signing and as background art.

Film Review: HBO’s “Kevorkian” (2010)

Director Matthew Galkin’s documentary Kevorkian (aired on HBO on June 28th; also available on YouTube; ETA: as codeman38 points out below, the YouTube version is, unfortunately, not closed-captioned) is one of those documentaries that I felt nervous about watching, mostly because I was extremely skeptical that it would be anything other than a massive apologia for the man colloquially known as “Dr. Death” in the U.S. news media and among much of the North American public. I was also concerned that my own complicated views on physician-assisted suicide would impact my feelings on whether this documentary was worth the time and emotional energy spent watching it. Like many documentaries, it is a difficult film to watch. It is not uplifting by any means. Parts of it are brutal. Parts of it are frightening. That said, however, I am ultimately glad that I watched this film — not because it “humanizes” Jack Kevorkian or acts as an apologia, but because it deftly explores issues of ethics, law, the power of the media, and legacy.

The entire film is framed by Kevorkian’s ill-fated 2008 bid for a congressional seat representing the state of Michigan —  his platform, as the film shows it, leans heavily on the Ninth Amendment — but his congressional hopes are not the most interesting or thought-provoking part of the film. Almost paradoxically, the most interesting part of this documentary is the fact that Kevorkian does a pretty excellent job of not coming across as particularly sympathetic, something that a viewer might not glean from the film’s trailer.

Here, Kevorkian comes off as one majorly self-aggrandizing guy, and it seems like the director does not have to work very hard to make viewers see that Kevorkian can be difficult to deal with. He often seems so enamored of his own ideas, and his own legacy, that he focuses on these things to the detriment of his friends and allies — and, ultimately, his cause. This becomes most clear in one sequence late in the film, where a longtime supporter of Kevorkian’s publicly disagrees with him at a small town hall-style meeting; Kevorkian responds not by answering the man’s questions regarding the Ninth Amendment, civilly discussing his differences of opinion or why he feels the way that he does, but by yelling at him and then forcefully spitting, “I wish you weren’t here [at this meeting]!” Kevorkian’s behavior during the Thomas Youk case is also ethically questionable, as he videotaped Youk’s death in part with the aim of bringing more publicity and media attention to himself and his cause, even though the videotape would most likely put him (Kevorkian) in prison for murder; as one journalist phrases it, Kevorkian wanted to start a “national debate on [physician-assisted suicide]” by appearing on 60 Minutes with the full tape of Youk’s death. The 60 Minutes footage, both of the Youk tape and Kevorkian’s interview with correspondent Mike Wallace, shown in the film is nothing short of chilling; when Kevorkian intones, “Either they go, or I do,” one may pause to consider that a potential “win” of this particular fight would be built on the bodies of those he has “assisted.”

Unfortunately, no one who opposes Kevorkian’s views on assisted suicide — or his political platform, for that matter (with the exception of the former supporter mentioned above) — gets any screen time whatsoever, and this ends up making the film as a whole seem extremely one-sided. As a viewer, I would have been interested in seeing people who oppose Kevorkian’s method and message, particularly since Kevorkian’s former lawyer simplifies the opposition to him, and physician-assisted suicide in general, by casting any opposition as right-wing religious reactionism versus “enlightenment,” thereby erasing the many disability activists who have criticized Kevorkian and his methods. And while Kevorkian certainly does an admirable job of not coming across as anything other than a guy who overestimates his own importance, or gives any consideration to the reasons why some might oppose his methods or message, the film’s lack of any substantial exploration of opposing view(s) was disappointing.

Despite its flaws, Kevorkian is an interesting, thought-provoking and disturbing documentary. As someone who has complex personal feelings about physician-assisted suicide and its ethics, I am of the opinion that this documentary provides a riveting look at the life of a man whose actions have, for better or worse, managed to galvanize the discussion of physician-assisted suicide, and related issues surrounding medical ethics, the media’s role in medical issues, life, death, and quality of life in the United States.

Commenting Note: This is NOT a thread in which to debate the “rightness” or “wrongness” of physician-assisted suicide in general. Please keep your comments to either the issues discussed here, those brought up by the Kevorkian case/media coverage/related topics, or those illuminated in the film. The entire film is available in 9 parts on YouTube [trigger warning for in-depth discussion of PAS, and accessibility warning for lack of closed-captioning].

Recommended Reading for June 15, 2010

dhobikikutti (DW): This is also needed: A Space In Which To Be Angry

And what I have realised is that there is a sixth component to [personal profile] zvi‘s rules, and that is that complaining about and calling out what you do not like does help, slowly, painfully, get rid of it.

Every time I see friends who make locked posts about fic that Others them, that writes appropriatively and ignorantly and dismissively and condescendingly and fetishistically about their identities, I think — there needs to be a space where this can be said.

damned_colonial (DW): Hurt/comfort and the real world [warning: derailing in comments]

Writing a short ficlet in which someone who has been abused/injured/disabled/etc is “comforted” and feels better seldom bears much relation to the reality of abuse/injury/disability/etc. Which, OK, we write a lot of unrealistic things. The problem with this one is that the idea of hurts being easily cured/comforted is one that also exists in the real world and harms real people. Almost anyone with a real-world, serious “hurt” has had people dismiss and belittle their experience on the assumption that they “should be over it by now” or that “if you just did X” the problem would go away. People are often treated badly or denied care on these grounds.

Pauline W. Chen, M.D. (New York Times): Why Patients Aren’t Getting the Shingles Vaccine

“Shingles vaccination has become a disparity issue,” Dr. Hurley added. “It’s great that this vaccine was developed and could potentially prevent a very severe disease. But we have to have a reimbursement process that coincides with these interventions. Just making these vaccines doesn’t mean that they will have a public health impact.”

Trine Tsouderos (Chicago Tribune/L.A. Times): The push and pull over a chronic fatigue syndrome study

Nine months later, the joyous mood has soured. Five research teams trying to confirm the finding have reported in journals or at conferences that they could not find the retrovirus, known as XMRV, in patients diagnosed with chronic fatigue syndrome, casting grave doubts on the connection.

Kjerstin Johnson at Bitch Magazine’s Sm{art} blog: Riva Lehrer’s body of art

To Lehrer, who has spina bifida, “Disability and art are natural partners. In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions…”

Recommended Reading for 4 June, 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.

Clyde, a blind border collie, with his assistance dog Bonnie. The two dogs are lying on the grass together.

This is Bonnie and Clyde! Clyde is a vision-impaired Border Collie and Bonnie is his assistance dog. Photo by Flickr user Lisa, licensed under Creative Commons.

Wheelchair Dancer: What Kind Of Life?

I don’t have the sense that I am kicking back slightly, leaning into life differently, because things matter less/differently now because I am disabled now, because I had a successful life beforehand. I don’t feel on a daily basis that I can let myself off the hook now because I manage to live, achieve, and make it. Disability isn’t a soft position for me. Since becoming disabled, I’ve remade my life, yes, but I have remade it in such a way that it is perhaps fuller and certainly physically harder and less comfortable (at work at least) than it ever has been. My life is more intense. Every small success means more because I have had to work harder for it than I ever had to in my previous life.

Cusp at L’Ombre de mon Ombre: Medical professionals and communication (ETA: Evidently this blog was closed after this Recommended Reading went up? If the author would like me to remove the link altogether, please email?)

Why is it then in such situations I always come to a point, no matter how much I rehearse my attitude and responses, where I feel like I’m at school and must do as I’m told: that I’m standing the in my nice grammar school uniform waiting to have whatever someone else thinks is good for me, done to or metered out to me ? I hate that feeling and hate myself for having that feeling 36 years after I have left school.

Jo Tamar at Hoyden About Town: A month of detention without review

Imagine a world in which you could be held by a government agency, against your will, for up to a month.

If you have a mental illness, that is now a real possibility.

Philip Wen at Sydney Morning Herald: Federal funds frozen for disability enterprises

Funding is regularly reviewed. The last deal was a three-year contract agreed under the Howard government, passing on an effective increase of less than 3 per cent a year. That deal expires next month.

But when the funding for next year was announced in this year’s federal budget, ADEs were in for a rude shock. The government had frozen funding, with no increase for indexation.

Shiva at Biodiverse Resistance: The fuzzy boundaries of accessibility

Both these conversations got me thinking: the first about what exactly i consider venues or events that are inaccessible to me, and whether i would expect my friends to boycott them because of that, and the second about whether it really is possible, even if desirable, to have a personal policy of boycotting all inaccessible events or venues. In both cases, the fuzzy, blurry question is – to me anyway – that of where the boundaries of the concept of “accessibility” lie.

Margery A. Beck at Associated Press: Appeals court: Union Pacific did not discriminate

She said in her lawsuit she did not know the evaluation was a mental health exam, and that Union Pacific used it to change her diagnosis and disability to a mental health condition, rather than a physical one.

Based on the mental health diagnosis, Norman’s long-term disability benefits were terminated, reinstated upon appeal, then terminated again, the lawsuit said.

Recommended Reading for Friday, 30 April 2010

Warning: Offsite links are not necessarily 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.

Three dancers, dressed in teal and purple, lined up in a row in performance. The front dancer is kneeling, the middle dancer is seated in a wheelchair, and the rear dancer is standing.

From front, Kong Veasna, Kim Sathia and Mao Tipmony performing at the Spotlight festival in Phnom Penh. (Vandy Rattana/Epic Arts Cambodia) (Creative Commons License, Cambodia Trust)

Reminder: Tomorrow is Blogging Against Disablism Day! You can check in at Diary of a Goldfish to see all the submissions (and submit your own work if you are participating). Many, many thanks to The Goldfish for all of the organising work which goes into this.

Mia Mingus at Leaving Evidence: Interdependency (via curate)

Being physically disabled and having mobility needs that are considered “special,” means that I often need people to help me carry things, push my wheelchair, park my car, or lend me an arm to lean on when I walk.   It means that much of my accessibility depends on the person I’m with and the relationship I have with them. Because most accessibility is done through relationships, many disabled people must learn the keen art of maintaining a relationship in order to maintain their level of accessibility.  It is an exhausting task and something that we have had to master and execute seamlessly, in many of the same ways we have all had to master how to navigate and survive white supremacy, heterosexism, our families, economic exploitation, violence and trauma.

Wheelchair Dancer: Arizona’s Immigration Laws

Two questions: what kinds of offenses make people removable? (Note: even the very word choice — removable — makes it sound like you are taking out the trash.) Turns out that besides the biggies, like you know, murder, the case for removability can be built from smaller things such as traffic offenses. Without a warrant? Perhaps that’s one thing if you see a person on the street robbing a bank, but I can see it being used as an excuse to enter homes, to conduct raids, to begin to hunt people down. I can see it being used as a way of legalizing the immigration equivalent of witch hunts.

Tanya M. Luhrmann at the American Journal of Psychiatry: The Protest Psychosis: How Schizophrenia Became a Black Disease (book review, warning, some problematic word use)

Perhaps the explanation is that it is so morally distressing to confront the costs of human social life. This, after all, was the story of the 1965 Moynihan report—a report that documented the real challenges of African American life in the inner city and was roundly criticized as racist and dismissed. Racial prejudice, after all, is something that readers of a book like this can act on or at least believe they can alter. Deep social inequality that leaves its marks on the body and mind is far more difficult to uproot. There is little doubt, however, that those marks are real.

Kavita Ramdas at TED Talks: Radical women, embracing tradition (video and transcript)

Why is it that women are, on the one hand, viciously oppressed by cultural practices, and yet, at the same time, are the preservers of culture in most societies? Is the hijab or the headscarf a symbol of submission or resistance? When so many women and girls are beaten, raped, maimed, on a daily basis, in the name of all kinds of causes, honor, religion, nationality, what allows women to replant trees, to rebuild societies, to lead radical, non-violent movements for social change?

Denise Grady at the New York Times: Second Opinion: In Reporting Symptoms, Don’t Patients Know Best?

“There is a sensibility among some old-school clinicians that they have a better sense of their patients’ experience than patients do themselves,” Dr. Basch said. “But doctors and nurses bring their own biases to the evaluation. They might say, ‘Mrs. Smith always exaggerates her fatigue — she says 9, but I rate it a 6.’ ”

Kaitlyn at Oh Money Trumpets: Medication for Bipolar Disorder and TV Shows

But with my mood swings, the “alien” idea made more sense. A better metaphor is a switch. A switch is flicked, I get so pissed off. Switched again, I don’t want to do anything. Switched again, back to baseline. No control. Which got a bit annoying, because I’d be mad at somebody. They’d get mad at me for being mad at them for no reason. Then I’d get mad at them for being mad at me when I had no control over the original anger!