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.

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited. And have yourself a fabulous weekend.

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.

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…”