Category Archives: medical practice

A.I. spotlight: Keepon and Paro

At the risk of understatement, exciting things are happening when it comes to robotics and artificial intelligence and the potential applicability of these fields in the lives of PWDs.

[Description: A small, bright yellow robot with two eyes and a black nose stands in front of a white background. Outlined in orange and bright blue, the robot leans slightly to the left while it sits atop a small black pedestal]  Image courtesy of this page on the CMU website.

The little ‘bot pictured above is Keepon, developed by Hideki Kozima and Marek Michalowski at Carnegie Mellon University’s Robotics Institute, located in Pittsburgh, Pennsylvania. Keepon’s purpose is to interact with children with emotional, neurological or sensory processing disorders, and who otherwise may have difficulty interacting with other children, relatives, or caregivers. However, Keepon has become something of an internet sensation in recent years, most notably when a 2007 video of the robot dancing to Spoon’s “I Turn My Camera On” became extremely popular on YouTube, and inspired a Wired Magazine-backed promo video for Spoon featuring Keepon. As this 2008 excerpt (accessibility warning: video is not close-captioned) from Discovery Channel’s show “The Works” demonstrates, there is quite a bit of potential for Keepon’s original purpose; it may be cute (and a great dancer), but the potential for this sort of technology to help children with disabilities is worth further exploration.

A New York Times article from this past July, written by Amy Harmon, discussed another A.I. creature, Paro, which is made to resemble a seal cub. Paro was first developed by Takanori Shibata, a researcher working at Japan’s national science institute AIST.  The NYT article describes Paro thusly:

Paro is a robot modeled after a baby harp seal. It trills and paddles when petted, blinks when the lights go up, opens its eyes at loud noises and yelps when handled roughly or held upside down. Two microprocessors under its artificial white fur adjust its behavior based on information from dozens of hidden sensors that monitor sound, light, temperature and touch. It perks up at the sound of its name, praise and, over time, the words it hears frequently.

The whole article is worth a read, as it covers the success that some senior residential communities in the U.S. have had with using Paro as an assistive device — sort of akin to animal therapy without an actual animal (which might cause problems for, say, residents with allergy issues) — for some residents.  There is also a video at the NYT’s website (unfortunately, sans transcript) that shows Paro in action. The article also discusses at length some of the benefits of this sort of technology, as well as some of its limitations.

Of course, Keepon and Paro are only two examples of the amazing possibilities of artificial intelligence, and it remains to be seen as to whether this technology — which, like many new technologies, currently comes with a rather hefty price tag — can be made more accessible to people or organizations that cannot afford to pay $6,000 U.S. for a Paro. Hopefully, these A.I. breakthroughs will not be as pricey in the future, and will be made accessible to a wider variety of people — including PWDs.

Predatory Lending and Health Services

Here in Los Angeles, we’ve recently witnessed an explosion of billboards, radio ads, and other solicitations for people to get weight loss surgeries. The ads make it sound so attractive – “let your new life begin, call 1-800-GET-SLIM!” And each of the billboards prominently advertises that they accept payment from Medi-Cal (CA’s Medicaid program) or Medicare, as well as other forms of insurance. As one of the LA Times articles about the phenomenon notes, “the lap-band campaign seems to be some kind of marketing watershed — I’ve never seen anything promoted so ferociously on the L.A. freeways.”

So what’s the problem? People who want lap-band surgery can now obtain it, and get it covered by insurance. No big deal, seemingly. Until you dig a little deeper to see who is behind this push, like the LA Times did:

The people behind TopSurgeons are the Omidi brothers — Julian, whose medical license was revoked in 2009, and Michael, who was placed on three years’ probation for gross negligence in 2008,according to the Medical Board of California.

* The inspectors found unsanitary conditions in the surgical areas. Medications and supplies to treat complications from anesthesia were expired or missing, though 23 patients were waiting for surgery.

* Surgical instruments weren’t being properly disinfected. Medical supplies that were supposed to have been tossed after use on a single patient were being reused. Two employees had positive tests for tuberculosis, but there was no record that they got required follow-up chest X-rays.

* The crash cart, which carries equipment and supplies for cardiac emergencies, contained opened and expired drugs and supplies, including some more than 4 years old. Other drugs and supplies, including emergency drugs, were months or years past expiration. Filled and inadequately labeled syringes were found in the operating room. Most of the scrub sinks weren’t working.

* Patient records, which contain such confidential information as psychological exams, were left where unauthorized people could read them.

Um, wow! That sounds like a safe and well-organized and overseen place to undergo major surgery under general anesthesia! But at least the people who are undergoing surgery really need it and it will significantly benefit their health, right? Well, no, says the LA Times:

Medical guidelines endorsed by the National Institutes of Health say the prime candidates for the lap-band are morbidly obese patients, defined as those with a body mass index — a comparison of weight and height — of 40 and above. (A 5-foot-10 person would register a 40 BMI at 279 pounds, or about 100 pounds overweight.) Patients with a BMI of 35 (244 pounds for our 5-10 subject) would be candidates if they also had weight-related conditions such as diabetes.

The patient selection principles of TopSurgeons seem to be rather liberal. Its website says it “can help those with a BMI of 27 or greater.” (For our 5-10 patient, that’s a threshold of 188 pounds.)

There are two problems with those broad patient selection rules. First, patients who do not really qualify for the procedure and who are not expected to benefit from it are undergoing major and potentially life-threatening surgery for no good reason. Second, the insurance companies base payment off those NIH criteria, so are not likely to pay for surgery for those folks who opt for surgery but do not meet the NIH guidelines. Given the marketing push, the tie to fat shaming, and the extremely liberal acceptance guidelines of these doctors, a majority of their patients are likely to be considered “voluntary” and thus not eligible for insurance coverage of the surgery.

This surgery costs around $18,000. So if insurance isn’t paying for it, who does? Most of the people targeted by these billboards and ads are low-income and predominantly Spanish-speaking, so don’t just have $18,000 in their checking accounts to pay for this surgery. Instead, they’re offered credit lines to cover the cost of the surgery – and charged 13.9% interest on the costs.

That kind of predatory lending would be bad enough if it were limited to people who actually opted to undergo the surgery. But the entire operation seems to be an effort to get people to sign up for financing:

According to Nancy Wambaa, a 51-year-old Los Angeles woman, TopSurgeons “encouraged” her during an office visit last year to fill out an application for the card just to check her credit. A full-time student and Medi-Cal enrollee, she was surprised to be told within hours that she’d been approved, and even more surprised a month later to get a bill for $15,000 from GE, even though she had told TopSurgeons that on her doctor’s advice she had decided against the surgery.

TopSurgeons eventually refunded $12,000 but kept $3,000 as a “cancellation fee.” She sued the Omidi brothers in state court Aug. 20, 2009, alleging breach of contract, breach of fiduciary duty and violation of the state consumer protection law. The court file indicates that they never answered her lawsuit, and in December she won a default judgment for the money.

Nothing like being billed $15,000 at 13.9% interest for a medical procedure you did not sign up for and for which you had no actual medical need!

…And At This Point, I Don’t See It Stopping Anytime Soon

Courtesy of amandaw I bring you this stellar article that once again rubs in my face how brilliantly miserable the VA is scratching the surface of realizing what is wrong with they way they even see women veterans. If you read along carefully you can even see the lightly sugar-coated condescension artfully woven in TIME writer Laura Fitzpatrick’s story. It really is a piece of work, from the dismissive way she re-counts the testimony of the “presumed” treatment of a victim survivor of sexual assault at the hands of a medical professional (because they NEVER do THAT) down to the detailed description of the very girlie attire of the staff at the impressively mostly women-run facility in Palo Alto. I crave to read the way a man’s shoes click-clack on a hospital hall’s floors in such a manner. But it is a very cliche description etched in the halls of descriptive-writing history, INORITE, so who am I to argue with the laws of good writing. I am, after all, only an amateur.

The news isn’t that the VA is failing women veterans. I’ve known that for quite some time. Really, I have. I have encountered some of the treatment described to some degrees first-hand:

I remember having to hunt around for a toilet in an ill-fitting paper gown at my own exit screening, past several other open, occupied exam rooms. I was the only woman there. They had no sanitary napkin to offer me and it was an embarrassing scene trying to find a place where I could insert a tampon. I was fighting back tears when I finally found a (presumably) unisex bathroom.

So My Dear Friend Ms. Fitzpatrick’s dismissal of Anuradha Bhagwati’s story, the one she gave as testimony before the House Committee on Veterans’ Affairs is ill-received. It isn’t too far-fetched for me to imagine the way she recounts “the ham-handed manner in which a male gynecologist, upon being told by a patient that she had been sexually assaulted, left the exam room and — presumably to beckon a female staff member — yelled down the hall, ‘We’ve got another one!'”. I can easily see the inept professionals at the inadequate facilities just stumbling over how to even grasp a way to provide basic courtesy to a patient who isn’t like them. And failing. Miserably.

The news here is that they seem to have no idea how to fix it, and no set, immediate time line in mind for seeing progress. Sure, Secretary of the VA, Eric K. Shinseki recently, at a forum at the Women in Military Service for America Memorial in Arlington, Virginia, has said that he hopes to have the VA ready to serve 100% of veterans in 25 years, but what is going to happen to this generation of women veterans who are already being ignored? To the women veterans of the wars past who have been fighting for help all along already?

Because their concerns are already being swept aside. You can already see as things like their urinary-tract issues being categorized as simple “gender differences”, because women react to the desert differently. Sure, possibly. I’ve seen this intimated a few times. People looking to explain away womanly behavior in high stress situations. Oh! They didn’t want to stop the convoy! Well, why is that? Maybe because we know that women are far more likely to be killed by their fellow servicemembers than by combat in combat zones that they learned defense mechanisms, as confessed to by Col. Janis Karpinski. Women tended to drink less water, as little as they thought they could get away with, to avoid using latrines or having to stop roadside alone with men out of fear of sexual assault. And it killed some of them. If you remember, though, Karpinski was even dismissed as a woman scorned because of the Abu Ghraib scandal, anyhow, so we can’t win for losing. She was just ratting out her old boss because she got in trouble.

Some of it is true, though. Most of the VA’s 144 hospitals do not have the proper facilities to even offer privacy to non-men patients, let alone provide gynecological care, or as I mentioned above, pads. The TIME article notes a hospital in Salt Lake City which announced that it delivered its first baby this past October (the article mentions that its average patient is 78 and male), but the day after the little girl’s arrival they didn’t know how much she weighed (I cringe to think how much more they couldn’t provide) because they didn’t even have an infant scale.

Women veterans are spiking in numbers. They, funnily enough, are not the same as men. That means they are not the same as the average patient, such as that the Salt Lake City hospital are used to dealing with, and their health care with be different. Even if you line up the matching parts, the treatment for heart disease and blood pressure, to my lay knowledge, is not the same. The numbers have been growing since The Great War, and surged after we had the need to call the next one World War II. It took until 1988 for the VA to start providing even limited care to women veterans.

Today, women veterans in need of help from the VA are of an average age far younger than the average male veteran (for obvious reasons) and have different needs. They are at least twice as likely than civilian women to be homeless (with only 8 facilities in all the U.S. available to help homeless women veterans with children). They are likely to be mothers when they are. Many of them returning from combat zones — yes, combat zones, why do you ask? — are coming home to families and are more likely than their male counterparts to get divorced following combat connected tours. They are really damned likely to get asked if that is their husband’s or boyfriend’s shirt they are wearing, or asked for their husband’s social by a thoughtless agent on the phone. They are the forgotten in war. Doubly so if they served in a branch of the military that isn’t on the forefront of the public’s mind as “really the military” (as slave2tehtink has said, Aircraft carriers tend to not be zipped around by civilians, yo). Extra-specially so if you had a thinkin’ job, like “nuke” or “spook”, and your Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), or Military Sexual Trauma (MST) didn’t happen “In Country” (Iraq or Afghanistan), the only sanctioned places where these things can occur, you know.

It’s frustrating as hell. And while I don’t believe that the VA is intentionally forgetting about us, I don’t believe that they are doing everything that they can to make sure that it gets better faster.

And honestly, I don’t think writers like Ms. Fitzpatrick are helping. But maybe I am jaded and have been at this for too long. But the VA needs an overhaul, stat. Pretty words from the Secretary of the VA and promises that it will be better in a couple of decades just aren’t good enough.

Why am I surprised by this?

To begin, rather pithily: I have had very mixed experiences with medical professionals throughout my life. Some have been fantastic. Some have been middle-of-the-road. And, as you might expect to hear from a person with a chronic pain condition, some have been absolutely awful.

Recently, I had a fantastic experience in a consultation with the oral surgeon who will be — at the time of this writing — removing the three wisdom teeth that I have in my skull [note: by the time this post is up, I will be recovering from the surgery and therefore on a bit of a break from blogularly goings-on]. Given my past experiences with medical professionals, I was not optimistic going into the consultation. I have a pretty spotty history when it comes to dental sensitivity, have been labeled an “anxious” patient in the past because of said sensitivity issues, and thus have a mountain of concerns about surgical procedures because of the medical conditions that I already have — cerebral palsy and fibromyalgia among them.  I was fully expecting that the surgeon would either minimize and perhaps outright dismiss my concerns during this appointment; worse, he might actively resist giving me anything other than over-the-counter pain medications for what is known as being a very painful procedure, as fibromyalgia patients seem to have a reputation as being “drug-seeking” among some people in the medical community and in the popular imagination at large (to say nothing of the ridiculousness of getting one’s wisdom teeth removed as a method of obtaining prescription drugs).

Interestingly, this was one of those times where I would be happy to be wrong. The oral surgeon not only explained the actual procedure to me in great detail, but listened very patiently to my concerns about possible issues due to increased pain (possibly relating to fibro, as it tends to flare up after any medical procedure that involves high doses of medication that I do not normally take) and muscle spasms (that would be the cerebral palsy, which has left me with muscular weakness on the left side of my body and occasional spasm attacks in my left leg). He also asked many questions about both the fibro and the CP, and reassured me that he and his staff would watch for things relating to each condition that could possibly occur during and after the procedure.

This consultation — and the oral surgeon’s taking my concerns so seriously — was a welcome break from the fighting-an-uphill-battle-with-my-bare-hands sort of feeling that I’ve gotten from some past medical and health-related consultations. I am, of course, of the opinion that these sorts of positive experiences should not be this unusual, and that they apparently are so unusual gives me pause for a myriad of reasons.

Recommended Reading for 12 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.

BBC News: Families with disabled children ‘struggle to pay bills’

Srabani Sen, chief executive of Contact a Family, said: “Many families with disabled children are in financial dire straits.

“Everyone has been hit hard by the recession but families with disabled children were already having to cope with a harsh combination of extra living costs and the difficulty of holding down a job and caring.

“These financial pressures have been worsened by the economic slump and have left many at breaking point.”

Researchers found that 23%, almost one in four, had to turn off their heating to save money and one in seven, 14%, are going without food.

Politics Daily: Thousands of Soldiers Unfit for War Duty

In an unmistakable sign that the Army is struggling with exhaustion after nine years of fighting, combat commanders whose units are headed to Afghanistan increasingly choose to leave behind soldiers who can no longer perform, putting additional strain on those who still can.

The growing pool of “non-deployable” soldiers make up roughly 10 percent of the 116,423 active-duty soldiers currently in Iraq and Afghanistan. Thousands more Army reservists and National Guard soldiers are also considered unfit to deploy, a growing burden on an Army that has sworn to care for them as long as needed.

“These 13,000 soldiers, that number’s not going to go away,” said Brig. Gen. Gary Cheek, who heads the Army’s Warrior Transition Command, which oversees the treatment and disposition of unfit soldiers. “If anything, it’s going to get larger as the Army continues the tempo it’s on.

“This is an Army at war.”

Laura Hershey: Some Thoughts about Public Space

I myself am a very noticeable presence in any public venue. I use a power wheelchair which I operate by blowing into a tube. I have more tubes going into my nose, connected to a mechanical ventilator, which pumps air into my lungs as I breathe. At symphony orchestra concerts, during pianissimo passages, I’ve become acutely aware of the mechanical sounds emanating from my respiratory equipment. My self-consciousness has sometimes veered close to embarrassment, but I’ve reminded myself that I have as much right as anyone to be in the presence of that great music.

Change.org’s Environment blog: Going Under For Surgery? Doctors May Be Going Green Too

So I’m all for rooting out the last vestiges of wasteful carbon from every last corner of our society. But, I have to say, this study makes me slightly nervous. “Going under” is a dangerous procedure, and I’m not sure I want my doctor thinking about the fate of the planet at a time he should be focused solely on my own fate.

Now, obviously the doctors themselves were quick to say that patient safety should and will always come first when choosing the correct drug. But, regardless, doctors who are concerned about the environment would want to know this information, they contend.

SPOUSE CALLS: Born on the 4th of July

In the headline there was no name, just a number: “1000th GI killed in Afghanistan.” I skimmed the story: Name not yet released pending notification of next of kin.

Numeric milestones seem so arbitrary. What makes 1000 more significant than 999? Mourning families don’t care about the math.

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[@]disabledfeminists[.]com

Interpreters and Emergency Rooms

I recently came across a news article about a lawsuit by several d/Deaf or hard of hearing people who were denied interpreter services in emergency rooms. It sounds both infuriating and terrifying:

One deaf hospital patient in Jacksonville Beach said she was given a stuffed monkey instead of the sign-language interpreter she requested for hours. Feeling isolated, she finally asked nurses for something to hold.

Another said she thought she was being denied medical care because there was no interpreter to explain why they needed her to wait in a hallway at Baptist Medical Center South. She later learned hospital staff lost a list of sign-language interpreters her mother had given them.

A third woman couldn’t hear when emergency workers at Baptist Medical Center downtown called her name.

The three women are among seven hearing-impaired emergency-room patients suing Baptist Health Systems for violating the Americans With Disabilities Act by failing to provide qualified sign-language interpreters. The lawsuit was filed in federal court last week by Jacksonville Area Legal Aid. Legal Aid attorney Sharon Caserta,  who works with hearing-impaired clients, said the pattern of complaints at Baptist facilities from 2006 to 2009 indicated a breakdown in services that denied deaf patients full access to care.

She said the act requires interpreters or effective auxiliary aids to be provided if needed for communication with medical professionals. The U.S. Justice Department has interpreted the law to mean a one- to two-hour response time is reasonable after an interpreter has been requested, Caserta said.

In Northeast Florida, she said, that shouldn’t be an issue because of a half-dozen organizations that provide interpretive services and the proximity of the Florida School for the Deaf and the Blind in St. Augustine. But Caserta said her clients never got interpreters and, if they didn’t have friends or family with them, had to fend for themselves at Baptist facilities.

Many are now scared to return to Baptist or any emergency room, she said.

These problems are not limited to that hospital, or even to the United States. According to one survey in the UK, “70% of deaf respondents reported being unable to have access to an interpreter when they attended an accident and emergency department.”

These incidents would be bad enough if their impact was limited to the incident itself. Being denied the right to communicate in an emergency situation is beyond unacceptable. It denies people the right to understand what’s happening to them. It denies them the ability to consent to treatment or make any decisions or have any agency at all in their treatment.

Even worse, these incidents undermine the reliability and usefulness of the health system itself. As the article above mentions, many of the plaintiffs “are now scared to return to … any emergency room.” This is echoed by the UK survey, which found that “communicating with health care professionals was such a struggle that 28% of deaf people responding to one survey were left so confused and dissatisfied with their inadequate GP health care that they avoided seeking medical help.” These people have learned that the health care system is unwilling to communicate with them in their time of urgent need. Is unwilling to take the time or make the effort to treat them as autonomous people participating in their own care.

In a demonstration of intersectionality, the facilities and areas in the US that have the best policies and practices about providing sign interpreters to d/Deaf and hard of hearing people are those with good policies for accommodating people with limited English speaking proficiency. (I would expect the same holds true for non-US locations which accommodate folks who don’t speak the primary language.) These places have created an infrastructure where interpreters are available and staff are trained on how to access them, and they’ve prioritized communication access in their facilities.

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…”

New VA Research Could Explain Lasting Effects of PTSD

Gentle readers! I come to you today with a delighted feeling that I do not believe is caused by the half life if a painkiller! Today I read an article in my paper version of Stars and Stripes that had to do with the intersection of disability and veterans and I was not instantly thrown into a bout of contemptuous paper shredding! I mean, really, I could make party favors and possibly go into business selling paper mache animals for children to beat with broom handles in hopes of gathering candy! But I am a slightly morbid person some days, especially when the painkillers aren’t working.

But in all seriousness, this article, about the long term effects of PTSD on the body, has some points which I will now discuss with you in a non-concise manner! Not the least of these details, relegated to two brief paragraphs, is the fact that the people at the VA are doing one study specifically aimed at women who served in the Vietnam War, acknowledging that while women did not serve in combat, that the war affected them in very real ways:

Women did not serve in combat during the Vietnam War but many experienced trauma while serving as nurses and care providers to the wounded returning from battlefield, Magruder said.

“No one has studied the mental health of these women,” she said. “Their experiences were certainly different than the men, but they had other experiences. Some of these women were the last people to hold the hand of an 18-year-old kid who was dying.”

Gee, their experiences were different from men, you say? No kidding? *ahem*

One of the biggest myths that I encounter, being the go-to girl on military matters in some social justice blogging circles is that combat veterans have the patent on PTSD, which is not only incorrect, but also erases the experiences of countless other people whose lives are destroyed by the ways that PTSD is still misunderstood. I’ll take two paragraphs if it means that the VA is finally getting around to accepting the idea that ladies might actually have what it takes to handle the VA being wrong (about ladies having PTSD, that is).

The VA is now trying to weasel out of the fact that they were ordered to look into this PTSD business a long time ago — a decade but who’s counting, amirite? — but decided to throw Congress the bird and a “Ah do what Ah WANT!” Eric Cartman impression. The National Vietnam Veterans Longitudinal Study, expected to help create new policies and effect changes for incoming veterans with PTSD by 2013 might have actually done some good for people who are already having trouble convincing doctors at the VA that their condition is real if the VA could have been arsed to get this show on the road back then. A decade ago they were one less war behind.

It’s nice that they are starting to get around to looking into things like the correlation between living with PTSD for years and developing other conditions. Things like cardiovascular disease, cancer, dementia, asthma and diabetes are common among Vietnam vets who have been living with PTSD for decades, and according to the article there are some who believe even the immune system is affected by years with PTSD. But you can’t help anyone when you aren’t doing the research to find out how.

As the VA is becoming sandwiched between claimants from war era veterans from major wars that have left physical and mental scars on so many, it is important that they get their act together and start doing what they were told to do a long damned time ago. Having the longitudinal data from Vietnam veterans will more than likely prove useful as more and more people come home from two fronts to their old lives and attempt to readjust, and it could lead to better services for more veterans from any war. I can’t say that I have a lot of faith in them to get it together. As Charles Trumpower, a disabled Marine who tours the country speaking to veterans about PTSD notes, not a lot has changed in the last 35 years.

Don’t get me wrong, I’m thrilled to see this research and this effort going underway, but wow, readers, should this have been done a long time ago. I can’t help but think of all the people that this could have helped.

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.

Injuries to mobility-impaired kids: researchers suggest “consider avoiding stairs”

MSNBC is carrying a Reuters article, Insult to injury: More kids hurt by own crutches, about injuries to young people “related to the use of crutches, wheelchairs and walkers”. Apparently, these injuries are “on the rise”, with significant numbers of USAn emergency room attendances related to injuries sustained while using a mobility aid.

Note, firstly, that there is no formal E.R. category nor any panic about injuries related to the use of legs, despite this being a rather large category of actual injuries.

Note, secondly, that journalists reporting on this study make no attempt to interrogate the root cause of the injuries, preferring to attributing the injuries to the use of the device itself, despite this:

[…] three out of four times, the injury was caused by tipping of the device or falling as the result of coming upon some sort of obstacle such as stairs, a curb, a ramp, rough ground, or icy, wet conditions.

Why are these injuries being attributed to use of the mobility aid, instead of to poor, inaccessible design? Why are kids falling trying to navigate stairs when there should be ramps and elevators available? Why are kids falling on curbs when there should be curb cuts? Were these injuries on rough ground and ice preventable by salting, pathways, cover? 70% of the injuries occurred while children were using wheelchairs. How many were occasioned while these children were trying to negotiate inaccessible environments?

We have no idea. Because no-one, apparently, has bothered to ask. Nor has any mention of inaccessibility been considered worth reporting or putting in the press release.

Instead, we get headlines like “Crutches, wheelchairs can cause injuries” and “Injuries can be caused by crutches, wheelchairs“.

The authors of the Pediatrics study themselves chose to title their journal article “Pediatric Mobility Aid–Related Injuries Treated in US Emergency Departments From 1991 to 2008“[1], and there is no mention of universal design or accessibility in their abstract.

In contrast, there are plenty of comments throughout the study of the issue of the supposed “misuse” of mobility aids, despite this accounting for only seven percent of injuries.

There is a mention of accessibility in the full-text article, buried deep in the discussion, but this never made it to anything that will be read by the general population, or indeed most of the medical profession. Furthermore, the mention of accessibility only talks about in-home modification – completely failing to address the number of injuries that occurred on curbs, rough ground, and icy conditions.

This is what the authors had to say about accessibility:

Curbs, stairs, rough terrain, and steep inclines and declines were common trigger factors for falls and other injuries, leading us to speculate that lack of accessibility, particularly in the home, may be 1 factor contributing to mobility aid–related injury. For children who were using mobility aids on a temporary basis, particularly crutches, home modification and avoiding stairs may not have been considered.

“Avoiding stairs”.

Mobility-impaired children should consider “avoiding stairs”! This is not just ignoring accessibility; it’s a giant slap in the face. Do the authors seriously think that it hasn’t occurred to anyone with a mobility impairment to try to avoid stairs? Really? We’d love to. That would be fabulous, thanks. However, we have lives. Lives in inaccessible environments, where we sometimes are left with the choice to take stairs or not go. To school and university, to work, to doctor’s appointments, to public transport, to artistic and political events, to social gatherings. Mobility-impaired people don’t take stairs and curbs out of choice; we do it because there’s no accessible alternative provided. And what happens to PWD who can’t take stairs no matter what? Confinement. Yes, PWD aren’t “confined” by wheelchairs; PWD are confined by discrimination, thoughtlessness, and inaccessibility.

Instead of using their platform to publicise an unequivocal call for safer public design, the authors choose to focus in their abstract and press release about how they think “additional research” is needed. The need for further research is, indeed, their ONLY conclusion! But if this research focuses on device malfunctions and children’s competence, “misuse” of mobility aids and custom in-home modifications, it is destined to fail.

If there is to be additional research, a broad, societal view must not be so studiously ignored. However, do we really need more and more and more research to tell us that kids with mobility aids have trouble negotiating stairs, have trouble getting up curbs, have trouble on icy ground? More research to tell us, five or ten or twenty years of inaction down the track, that PWD of all ages are endangered by inaccessible environments?

Without recognition of the systemic causes of a problem, there can be no successful systemic solutions. How much “additional research” is needed before there is action? How many inquiries? How many reports? How many white papers? We need to stop looking at the trees, and look at the forest.

The solution is to inaccessibility is accessibility. The first-tier principles of mobility accessibility are straightforward and long-established. Get on with it.

[Hat tip to Andrea of the Manor of Mixed Blessings]

[1] Pediatric Mobility Aid?Related Injuries Treated in US Emergency Departments From 1991 to 2008
Alison M. Barnard, Nicolas G. Nelson, Huiyun Xiang and Lara B. McKenzie
Pediatrics published online May 24, 2010;
DOI: 10.1542/peds.2009-3286