Tag Archives: science

Recommended Reading for December 21, 2010

James S. Fell for the Los Angeles Times: Holistic nutrition is weak on science, strong on selling supplements

You may not know the term, but you’ve surely heard its claims. Among other things, holistic nutritionists (or HNs, as they call themselves) may teach that fluoride and pesticides are lethal, that most diseases and detrimental behaviors are diet-related and that many people would benefit from taking numerous supplements. I’ve read plenty of articles by HNs in which they assert that they are disparaged by mainstream medicine and warn you not to trust modern medicine.

Gina Kolata for the New York Times: Tests detect Alzheimer’s risks, but should patients be told?

It is a quandary that is emblematic of major changes in the practice of medicine, affecting not just Alzheimer’s patients. Modern medicine has produced new diagnostic tools, from scanners to genetic tests, that can find diseases or predict disease risk decades before people would notice any symptoms.

Kathryn Roethel for the San Francisco Chronicle: Chronic migraines: When pain is all in the head

After Robertson’s headaches began, she started wearing sunglasses to school because the migraines made her sensitive to light. Then she gave up fencing – a sport she’d competed in for seven years. She cut school to half time, then had to quit altogether.

In their Potrero Hill home, Robertson’s family put in skylights because the light bulbs were too bright for her. They stopped cooking with garlic and onions because the scents made her nauseous. On the rare occasions when she is well enough to eat meals at the dinner table, her mother lowers the lights and everyone speaks calmly and softly.

David Sirota at Truthout: Why the “Lazy Jobless” Myth Persists

First, there’s what psychologists call the Just-World Fallacy — the tendency to believe the world is inherently fair. This delusion is embedded in our pervasive up-by-the-bootstraps, everyone-can-be-a-millionaire catechism. The myth of the lazy unemployed can seem to make sense because it connects those ancient fables to current news, effectively alleging that today’s jobless deserve their plight.

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: Mental Illness: Brain Function Impairment

Re-branding the current term “mental illness” to the more accurate description “brain functioning impairment”, will go a long way towards solving our stigma problem. We can reposition the impairment term as the politically correct term, and phase out the awful connotations of the old term. At a minimum, rebranding will go a long way toward forcing the general public to change its perception of people with BFI.

Recommended Reading for June 1, 2010

fiction_theory (LJ): The internet IS real life

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

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

Mattilda at Nobody Passes: Closer

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

thefourthvine (DW): [Meta]: The Audience

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

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

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

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

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

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

Recommended reading for May 4, 2010

RMJ: Disability and birth control, part 1

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

Eugenia: Siempre eqivocada

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

meowser: BADD 2010: The Total Erasure of Partial Disability

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

Jha: My Invisible Disability

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

Latoya: Open Thread: Science, Conclusions, and Assumptions

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

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

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

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

Conceptualizing disability

Amanda flags a great post by Anne C at Existence is Wonderful, which catalogues “three different ways of looking at autism — in terms of neurological structure, in terms of lived experience, and in terms of outward behavior.”  And Anne does such wonderful things with this delineation. Click through to read the whole post, which addresses attitudes toward autism in particular, but I think Anne hit on something that can be safely generalized outward — her three approaches toward autism can also, in fact, be three approaches toward disability.

[aut_concept_chart.png]AnneC’s chart: Conceptualizing Autism, transcribed below1

Some highlights, all emphasis mine.

My guess is that there are probably multiple underlying structural variations that can produce “autistic phenotypes”, and it will be interesting to see how this pans out, but at any rate, one important aspect of how I presently conceptualize autism is the fact that some structural differences do seem to really exist. And if the difference does indeed go “all the way down” to the brain, as it appears to, then it makes very little sense to (as some seem to) view autism as some kind of disruptive “module” overlaid upon a typical brain.

This is significant both in the cognitive science and the ethics realm, as it indicates (a) that experiments presuming autistic brains to be “broken versions of normal brains” are likely useless, and (b) that the best ways to help autistic people learn and develop functional skills are those which acknowledge an underlying and pervasive difference as opposed to those which presume that autism can be “removed” or “trained out” by simply eliminating surface behaviors.

Yes! Autism, or any disability, is not a case of “a normal brain gone wrong.” It is not a defect or even a modification of a “normal” brain. It is, simply put, variation. We will never overcome society’s confusion and mistreatment toward pwd as long as we think there is any such thing as a “normal” brain (or body) at all. Is any one color or pattern of a cat’s coat a “normal” one? Or are there many varieties, none inherently better or more-important than the others?

At heart of society’s approach toward disability is the assumption that there is a standard template for the human body, and if any one body turns out to be different, it is a deviation from that standard. As such, the solution to any problems resulting from said differences is to attempt to make up for that “deviation,” to attempt to make the “defective” body more like the standard template in whatever way possible.

Put this way, it is obvious that this approach is misguided at best. The solution is not to change the individual body to fit the narrow, faulty expectations, but to adjust those expectations to include the range and diversity of the human experience.

Similarly:

Mind you, none of this is meant to imply that I (or the researchers engaging in the experiments demonstrating visual-spatial trends in autistic persons) believe that autistic people cannot be disabled. Certainly, “uneven” development (which may include significant delays alongside “advanced” skill acquisition in some individuals), communication difficulties, and consequent social, educational, and occupational issues are very real. However, the existence of real disabilities and difficulties need not imply that the “whole person” is somehow diminished by the fact of being autistic, or that one cannot have attributes which exist as both strength and weakness depending upon the context.

This is where Anne comes back around to detail the third approach (outwardly knowable traits). She observes:

The orange column on the right of the diagram summarizes what most people probably think of as “autism” — that is, the externally-visible things that generally get people suspected of being, or identified as being, autistic in the first place.

This is where we see such things as diagnostic checklists, observations about a person’s developmental milestones (and when/if they meet certain expected ones), outward actions, language use, body language, tone of voice, social/educational/occupational success (or lack thereof) in the absence of modifying factors, etc.

What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

…which, honestly, is a bit scary and unsettling for those of us who are going to be the ones to bear the consequences of any such things.

  1. The chart reads in three columns, transcribed here:

    * Not Outwardly Visible (Indicated by comparison studies of tissues from autistic and non-autistic brains, and some imaging studies)
    * Neurology (Brain Structure/Wiring): Autistic and non-autistic brains are different at the physical level!
    * Some studies suggest: Differences in “minicolumn” cell concentration and size; Local/global processing differences; White/gray matter ratio differences … but there is still no conclusive “autism brain scan.”

    * Not Outwardly Visible (Can be extrapolated from tendencies in performing certain cognitive tasks, and from autistic self-reports and introspection)
    * Cognitive & Perceptual Style: What characterizes the experience of being Autistic
    * Tendency to notice and attend to different stimuli than non-autistic people; Language processing differences (learns and uses language atypically); Sensory processing differences; Different memory and problem-solving strategies

    * Outwardly Visible (Patterns & tendencies in a person’s actions, demeanor, etc.)
    * Observable Traits/Behavior: What usually gets a person identified/diagnosed as Autistic
    * Atypical/”uneven” development (skills acquired in nonstandard order and manner); Diagnostic criteria (i.e. DSM); Behavioral tendencies indicate underlying differences, but do not comprise those differences!

Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation”

[This post was originally posted at Hoyden About Town on April 27, 2009.]

There’s a whole industry that involves measuring the survival techniques and truths of people with CFS, then pointing the finger at them for causing their own illness with their Scientifically! Proven! personality “deficits”.

Here’s the latest product of that industry. They took 38 Belgians with CFS, all non-pregnant non-depressed women, diagnosed using CDC definitions (which are very non-specific) and attending a hospital outpatient clinic for CFS. The fact that they’re attending a hospital suggests to me that these are women with moderately severe CFS, unlikely to be mild, unlikely to be housebound.

They were compared to 42 “healthy female volunteers”, recruited “via the hospital staff”, we know not how. They then were all run through a self-administered personality questionnaire. The “controls” were matched only for age and education, not for, say, poverty.

The Discussion section is a triumph of scientific inconsistency, contradiction, and interpreting the results whichever way makes the PWCFS look the worst. I haven’t read anything this intellectually dishonest in quite a while. (Though a quick flick through the The Academy of Psychosomatic Medicine’s annals might quickly put paid to that.)

This study shows that in the eyes of the psychosomatic True Believers, no matter how you react to your illness, you are wrong.

Excerpted:

Use of the Temperament and Character Inventory (TCI) for assessment of personality in Chronic Fatigue Syndrome
Psychosomatics Vol. 50, #2, pp. 147-154
Date: March/April 2009
Elise Van Campen et al

The aim of this study was to examine the association between CFS and personality traits measured with the TCI self-report questionnaire. The main findings are that CFS patients scored higher on Harm-Avoidance and Persistence, and lower on Self-Directedness compared with healthy-controls.

The elevated Harm-Avoidance scores suggest that CFS patients tend to be more cautious, careful, fearful, insecure, or pessimistic, even in situations that do not worry other people.9

In situations that don’t worry volunteers with no illness, you mean. Sick people who have experienced over and over again trouble getting back to their car after an outing, sudden exhaustion meaning they have to lie down right away in a place they can’t lie down, pain crescendos that need immediate attention, people who have had to stop paid work and have seen their friends peel away one by one and their life savings disappear, people who have had to fight tooth and nail for disability payments and accommodations, people who scrimp every month to afford their medication: these people tend to be a bit careful in planning their activities, and overall feel a little less optimistic that life is coming up roses for them.

Continue reading Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation”