WE MUST CREATE CHANGE

I was going to call this my “Hope For 2015”, but that is so passive and useless. Anybody can – and lots of people do – post warm, fuzzy notes with Hopes for the New Year, and others click and share. Lovely.
But this is NOT all warm & fuzzy. It’s literally dead serious (with many murdered throughout the year), and quite often blunt, because I am blunt at times. It’s also a call to a change of perspective for some of you.
Deal. Think about it. I’m not a lone voice. Click and share.

MY CALL TO ACTION IS FOR YOU TO READ THIS THROUGH, THINK, AND SPEAK UP. ALL YEAR LONG.

And the next year and the next.

This isn’t about some stranger, or Those Other People, or “That Kind”.

Children with disabilities or other differences are not diseased or broken. The same is true for adults. Yes, those “poor, little disabled children” grow up into disabled adults. Gee, so where’s the concern now? It sure isn’t at work; in the U.S. general unemployment is at 5.3%, but for disabled adults it’s twice that at 10.8%.
Nor are autistic or ADHD children some kind of modern mystery; millions of such adults have been around for decades, just unrecognized for lack of diagnostics. Most of us are profoundly relieved to find out Why. We still have to deal with the details, but that’s easier when you know that not all your difficulties are from some kind of moral failing, or from a lack of trying (and trying, and trying).

WHAT, YOU NEVER HAD KIDS LIKE “THAT KIND” IN YOUR CLASSES? YOU KNOW WHY?

Some were kept at home, because until passage of the IDEA in 1975, US law did not require public schools to teach everyone.
Some were warehoused in institutions, badly treated, undiagnosed or misdiagnosed, and oft uneducated.
But many of us were there; how we struggled through school and life, without accommodations or understanding, and often the target of bullying by peers and even school officials.
Untold numbers of women and men just knew themselves inexplicably “a bit odd”, and did best they could; some succeeding, others not so well.
At worst are those who not only lacked resources, but were shunned by society’s classism, ableism, racism and sexism, and (if still alive) are found among the imprisoned, derelicts, addicts, abused and enslaved populations.

YOUR CHILDREN AND EVEN COLLEGE STUDENTS WILL LEARN DIFFERENTLY, SO YOU MUST ADJUST

We are neither inherently stupid nor incapable of learning. Learning differently means teaching differently. Find what works. Everyone has limits, but a consistent lack of success means you should use another method, as well as more time. Sometimes the learning is highly irregular in pace. Tie learning to interests to motivate your children and students.
Also, be aware that sometimes the “simple basics” may be entirely bypassed by some students who leap to master higher concepts, albeit often forever struggling with those seemingly “simple basics”. People are humans, not robots. Learning is not always linear.

COMMUNICATION IS NOT JUST SPEAKING

Never assume that just because someone is nonverbal they cannot communicate. If you’re not getting their messages, then *you* are doing something wrong. Nor should you assume that because someone is nonverbal that they cannot understand what people say (though the processing may sometimes be delayed). Nor assume that because someone has been nonverbal for years that they’ll never speak. And damn, will you get an earful.

INCONSISTENCY IN DAY-TO-DAY ABILITIES IS FRUSTRATING FOR ALL, AND NOT A CHOICE

Importantly, just because someone is able to speak or do a task one day, that does not guarantee consistent results. It’s the nature of disabilities — regardless whether considered mental or physical – all involve the brain. Brains are funny things, and many of us have a few buggy Beta-version programs in our wetware. It’s frustrating as hell for all involved.
But don’t assume the “could-then-can’t-now” is intentional. “Oh, he can hear me when he wants.” “Well, you could solve those equations just fine yesterday.” I can guarantee that after a lifetime of such, ridiculing people and punishing them for things they cannot help only increases performance stress.
While that stress might increase focus from sheer terror, it often squelches overall functioning. (Do you want me to listen to you, or try to recall yesterday’s process, or slowly figure it out on my own? I can only do one — if my stomach will stay down.)

TRAMPLE THE TROPES

Ignore the media tropes and centuries of religious hype: disabled people are neither inherently amoral, soulless and evil, nor are they infinitely happy, friendly and angelic. People are people. A few will be nasty bits, some will be profoundly good sorts, and the rest are just ordinary folks who get mad, sad and glad, who screw things up sometimes, and who will also serve others selflessly despite bearing more abuse than anyone should.
We are definitely not incomprehensible, incomplete, little autism-puzzle-pieces, unloving, unlovable, or uncaring.
We are whole people with all the same cares, needs and wants as all humans. Beware — disability happens to anyone at any time. We aren’t a Them, and YOU can be among the world’s 15% in just one day. We are all Us.

STOP “TEACHING TOLERANCE”

Because tolerance means putting up with something one doesn’t really like, or that doesn’t really belong. We want full-fledged ACCEPTANCE.
Nor should we only be acceptable if we can somehow “overcome” our differences enough to pass for Normal Real People. Trying to “pass” all the time is exhausting, and invariably breaks down, oft resulting in the [supposed] Normal Real People assuming that one is lazy, stupid, crazy, all the above, or worse.
Training children for hours a day how to artificially perform “acting normal” does not serve to help them learn how to function best in the world. Yes, of course teach good manners, social and work skills. But suppressing every twitch of one’s natural being adds to stress, making everything else yet more difficult. This is especially when performing like a “normal person” means not doing the harmless things that reduce stresses.

STOP THE BLAME

I must call out the terrifying, unaddressed assumption which underlies so much daily trauma: “The reason the disabled [children] are targeted by bullies is because they are perceived as being weird”. Despite the pervasiveness of this social theme in society, most people are functionally unaware of it, all the while instilling in their Normal People children the same message. Normal People children need to act normal, and not act like That Kind. After all, that’s how the Normal People know the others are That Kind, who’s Us and who’s Them.
But it’s the disabled and different who are taught, over-and-over-and-over that not only is it their fault for behaving or looking weird, BUT ALSO if they weren’t so weird, well then they wouldn’t be bullied. “Quit being so weird! Just say No! Just say Stop.”
Just say BULLSHIT. Because this is blaming the victim. The problem is not that everyone isn’t the same, the problem is that there are bullies.
Even worse, blaming the targets actually empowers the bullies, because the social story says it’s the victim is the one who is acting wrong, so it’s not really the bully who is to blame.
Let’s just top off all that existing anxiety and depression with the trauma of trying to seek justice, but being told again that, “Well it’s your fault, you know. Attracting attention by being weird, and bugging people. You need to quit making trouble now. You already take up too much of our time with all of your “special” needs. Quit whining and go deal with it. — But no fighting, because we’ll know it was you who started it.”
By the way, it’s not “just a kids at school” thing that everyone will “grown out of”. It continues on through college, and happens at work, too.

YOU CAN’T WALK IN THE LITTLE BOY’S SHOES;

THEY’RE FLOATING DOWN-RIVER

It is NEVER acceptable to murder disabled children. Nor should these repeated, horrifying events be considered “understandable” or “excusable”, with the murderers being pardoned just because their son or daughter had a disability.
Increasingly more prevalent in social media, the crime becomes insidiously deemed more and more acceptable. Murderers re-cast themselves as martyrs, acquiring champions to their cause. Throughout repeated blog posts and news stories, they bemoan how taking care of disabled children is just too unbearable, they had to take care of them every day of the week, there was never any relief or help. (Even though there was.) Cue the groupies’ hand-wringing and protests upon the villains’ behalf: “Oh but won’t you walk in their shoes, how they’ve given up their lives, this wasn’t at all what they wanted.”
For in true sociopathic fashion, the poor, long-suffering parents revel in the attention, announcing to the world – sometimes ahead of time — what they have done, and all the while describing themselves as the victims. The dead children (young or adult) are unwanted, and deemed unwantable, less than human just because they couldn’t speak, or needed medical treatments, or used a power chair, or didn’t play with their toys the “right way”, or wore adult diapers … No one would want to live like that; the thing’s better off dead. And what of the groupies? Well, where do you think people get such terrible ideas that it’s okay to kill one’s own children?

ENOUGH WITH THE “DISABILITY INSPIRATION PORN”.

Quit using those heart-tugging videos, walk-a-thons, telethons, and other grand-society functions to win your supposed Cosmic Brownie Points for giving us your pity. Please stop dumping upon us the largesse of your unwanted rags (so Victorian, so passé), or creating useless functions requiring us to serve as targets of unwanted helpful-helper-helpiness for your ego-boo.
Get disabled people out of “sheltered workshops”. Yes, people need work they are suited to. But the segregation and token sweatshop “wages” are an embarrassment and humiliation to all.

YES, CHILDREN GROW UP.

YEP, STILL DISABLED, BUT NOW ADULTS

Do not assume your children will remain permanently childish and incapable — they mature on their own timelines. Allow adults to be adults. Support their needs and interests, but neither dress them like children, nor expect them to live their lives in naïve pre-puberty stasis, without adult desires for socializing with adult peers, life-long learning, mastering skills for some kind of job (even if that job is “just socially productive work” rather than traditional work), and yes, having a love life, however that may be expressed.

YES, PEOPLE ALSO NEED ACCOMMODATIONS;

THAT DOESN’T MEAN “CURE”

Most disabled or different people are not looking for cures to magically change them into someone else, some kind of fantasy Normal Real person that their families wanted instead. Our differences may result from physical events, by random mutation, and / or genetics. Your genetics. We are family. I’m Me, and I like being Me. If you somehow changed all the differences in my brain, I wouldn’t be Me anymore, with all my quirks and abilities.
Of course it will be great to find a means for preventing migraines, epilepsy, fatal medical conditions, et cetera. But it’s also a sad fact that some people have been so convinced of their undesirability as disabled human beings that they can only see “cure” as a means to being an acceptable Normal Real Person. (Worst of all, some people commit suicide because they’ve been taught to hate themselves, as useless and unwanted.)
But what’s really alarming is all the fund-raising, talk, research, and work going on today to eliminate entire kinds of peoples. I’m talking about the thousands of selfish individuals and sociopaths who believe that anyone with neurological or morphological differences should not exist at all, because That Kind takes up too much time, money, and resources.
That’s not “looking for a cure” – that’s eugenics and euthanasia, the same ideas that led to the Nazi Aktion T4 program and other horrors. (In my youth, the state hospital was still in the regular habit of sterilizing people. Had I been institutionalized, I might well not have had my lovely children and grandchildren.)
Yes, we want assistance, we want things that help us achieve what we want in life. Getting the things one needs to learn effectively, to move about, attend to their own needs, to work, to play, to be a part of the community, to have lovers or families. These things should not be seen as extraordinary, special, absurd, or a waste of money, just because they aren’t the same kinds of things used by other people. 15% of the people in the world have disabilities. That is a lot of humanity, and many are uneducated, abused, neglected, avoided, or shut away, depriving the world of incredible amounts of untapped abilities and talents.

CALL OUT BULLSHIT. REQUIRE ACCOMMODATIONS. DEMAND ACCEPTANCE.

MAKE IT SO.

More bloviating by discredited Dr Wakefield

Outbreaks of  fully-preventable diseases are increasing

As reported on Thursday, April 11th in the UK paper The Independent, Swansea measles outbreak: Confirmed cases rise to nearly 700″, which is worse than than last year’s outbreak in Merseyside, England.
Over 2,600 MMR vaccines were given last week, but are still insufficient to counteract the number of unvaccinated people, or those who lack the full number of necessary dosages. Public health officials explained that the outbreak will continue to grow. (This is what is meant by “herd immunity”: there needs to be a sufficient percentage of people who are immune to prevent the spread of infection.)
And as the article reminds us,

Before the introduction of the MMR jab in 1988, about half a million children caught measles each year in the UK. Approximately 100 of those died.

But for reasons I don’t understand, Andrew Wakefield (who apparently suffers from ‘Center of Attention Deficit Disorder’*), was not just mentioned as a historical reference, due to being a pivotal figure in the paranoia that led to the drastic drop in immunisations. The front page of The Independent’s online edition for Saturday, 13 April 2013, has in its top, featured article a large photograph of him, Struck off MMR scare doctor: Welsh measles outbreak proves I was right. What in the world for?!

Why the concern over Wakefield’s opinions being published, with a newspaper’s front-page lead?

Andrew Wakefield should not be a featured person of interest for opinions. He is no longer a licensed doctor in either the UK or the US. In 2011, Medscape designated him “Worst Physician of the Year” and in 2012, Time listed him in, “Great Science Frauds”.  There is also a good editorial in the same edition of The Independent“Andrew Wakefield’s baleful legacy”.
Wakefield’s unprofessional behavior as a researcher and false assertions that MMR vaccines can lead to autism (in a 1998 article in The Lancet, later withdrawn by the journal) are  a bunch of frass (insect dung). Plus, his ongoing media attention and involvement with what initially were fringe groups, inflated such ‘antivax’ sentiments to mainstream popularity.
Vaccination rates dropped drastically, from 92% to as low as 50% in some areas. Measles outbreaks began occurring across Britain, and in 2006 for the first time in 14 years, someone died of this preventable disease.
(Similar outbreaks happened in the US as well, including mumps. In 2006 got an MMR vaccine then because I had never had mumps, nor been vaccinated for it. Even if I had, the old killed-virus mumps vaccine used when I was a child was found to be ineffective.)
Included in The Independent’s series of articles is the useful, “Timeline: How the MMR scare story spread”  by Jeremy Laurance.

The feature article: the good, the bad, and the problematic

The front-page feature by Jeremy Laurance is titled, “Struck off MMR scare doctor: Welsh measles outbreak proves I was right”. Which of course, is not true; Wakefield is just bloviating again**. As the front-page subhead reads, “Experts condemn discredited doctor’s outburst pinning the blame for the outbreak of measles in Wales on the Government as cases in the Swansea area rises”.
The linked article posted in the Health News section has a different title, “MMR scare doctor Andrew Wakefield breaks his silence: Measles outbreak in Wales proves I was right” (subhead: “As measles cases rise, experts condemn Wakefield’s outburst”), which begins with with six paragraphs of current events, then describes Wakefield’s assertions in the next eight paragraphs.
BUT, the factual counterpoints to the nonsense, clearly stated by, Adam Finn, paediatrics professor at University of Bristol, and childhood vaccines expert, are not given until afterwords, in the next nine paragraphs of the article.
Unfortunately, not everyone is going to read that far, nor stop to digest the complete refutation of all the idiocy that Wakefield said.
I think Finn’s factual material would have been more useful if presented earlier, such as a point-by-point dismissal of nonsense, e.g. ‘Wakefield claims … but Professor Flinn refutes …’
Alas, perhaps due to following the common news formula of, So-where’s-he-working-now, included this last paragraph, which unfortunately lends him what some might perceive as professional credibility:

“Dr Wakefield moved to Texas, US, in 2001 where he is director of Medical Interventions for Autism and in January was promoting a reality TV series on autism.”

Remember, Andrew Wakefield uses the title “Doctor” because he earned a degree in medicine; he is not licensed to practice medicine in either the UK or the US.
As I said, Wakefield should remain a historical warning, rather than a featured person of interest for opinions. Adding on the reasons why his comments are harmful nonsense at the end of an article are not enough to detract from the fact that all this frass is featured for free!
_____
* I didn’t make up the (fictional) COADD — ‘Center of Attention Deficit Disorder’, but I sure see a lot of it in our problem students (as opposed to the students with problems, who generally want to avoid being in class).
** Bloviating: a lesser-known, but useful addition to one’s vocabulary: to speak boastingly, pompously, aimlessly; as the OED says, “talk at length, especially in an inflated or empty way”

It's not all strawberry versus chocolate ice cream!

Now, I am a mint-chip ice cream (-loving) person myself, and dismiss vanilla* for being merely useful as an ingredient base for other treats. And of course, I’m entitled to my opinion. In turn, you all are free to express your own opinions about flavours of ice cream, including your total disinterest in eating ice cream.
(* It may be that I lack some kind of flavour receptor[s] to fully perceive vanilla/vanillin, because no matter what sort of sweet or quality of material, vanilla has never seemed to be particularly interesting or tasty to me.)
But there are opinions and there are other opinions, and Patrick Stokes, Lecturer in Philosophy at Deakin University, teaches his students that they are not entitled to have their opinions.
In a recent article, “No, you’re not entitled to your opinion” he immediately acknowledges this sounds a bit harsh, but explains that the point of a philosophy class  is learning how to create sound arguments, instead of leaning on beliefs, emotions, and misconceptions of what we think we know. Although opinions may be owned or expressed, not all opinions are equally valid.
Stokes skillfully distinguishes between the different things that fall under the vast umbrella of opinion:

But “opinion” ranges from tastes or preferences, through views about questions that concern most people such as prudence or politics, to views grounded in technical expertise, such as legal or scientific opinions.

It’s the conflating of being able to express one’s tastes, preferences, and beliefs — and then expecting those statements to be taken as seriously as fact-based, logically-sound argument — that is the major problem.
It is a major problem in everyday discourse, and in heated debates within and between countries, and it is an especially prevalent problem in various media. There’s the tired trope* of “getting balance” by interviewing “both sides” even though there are often more than just two sides (life is messy that way), and the problem that the opinions of both “sides” do not necessarily carry the same factual value (life is reality-based that way).
(* More on the problems with the news media and “balance” in my earlier post, “Both Sides Now”.)
Not all the information one finds or hears is equally valid. As Daniel Patrick Moynihan said, “You’re entitled to your own opinions, but not your own facts.”
Stokes further explains:

The problem with “I’m entitled to my opinion” is that, all too often, it’s used to shelter beliefs that should have been abandoned. It becomes shorthand for “I can say or think whatever I like” – and by extension, continuing to argue is somehow disrespectful. And this attitude feeds, I suggest, into the false equivalence between experts and non-experts that is an increasingly pernicious feature of our public discourse.

Wait a minute — can’t anyone have an opinion about anything? Of course!
Can’t anyone express their opinion about anything? Of course!*
(* Although it really helps if people take the time to ensure their protest signs are properly spelled and punctuated. Otherwise much hilarity ensues and one ends up with derisive and/or dismissive infamy rather than being taken seriously.)
But what unfounded opinion cannot do is carry equal weight when discussions require expertise.
Back to our ice cream opinions:  I know that vanilla bean pods come from a variety of orchid, because that’s a tidbit of horticultural knowledge and I am a horticulturalist. Being a foodie, I have long known that vanillin was synthesized as a less-expensive alternative for use in commercial products, and that it is the primary ingredient in the artificially-flavoured vanilla extract sold at the market.
BUT, I cannot be an expert witness or speaker on vanilla.
Likely, neither can the majority of you.
Not on the cultivars, growing, agri-ecology, processing from raw material to diverse flavouring forms, business economics, grower’s social justice issues, distribution and packaging, artificial synthesis of vanillin, culinary chemistry, historical usage, future trends of natural versus artificial flavouring … none of that stuff. Nor anything else that didn’t come to mind, albeit I was able to come up with a longish list just because I have that horticultural background and was able to extrapolate what accessory topics could be included.
You are entitled to have and to express your opinion, but that does not mean it must to be taken as serious fact; pointing that out is not being disrespectful to you as a person — it means that your opinion is insufficient to the case.
‘Personal Opinion’ is not some cloak of factual immunity that one can wear to suddenly become a creditable expert.
(Oh, and speaking of public persons with opinions but who are not experts, guess who came along to comment upon Stokes’ article …)

What Would Molly Ivins Say?

Oh, boy howdy! This article by Laura Hibbard, “Texas Republican Party Calls For Abstinence Only Sex Ed, Corporal Punishment In Schools” nearly made me choke on my cuppa tea. She described just a few of the details the 2012 Republican Party of Texas wants for their state schools. (The article also includes a nicely scrollable copy of their entire Platform Report.)
You know me, I’m a science person, with keen interests in education and social justice.  And I was flabbergasted. It’s like a car crash — you can’t help but gawp in horrified fascination. Well, I had the day off work, so after a house-painting break, scanned through most of the document. It’s one thing to hear soundbites on the radio or in video, but quite another to actually be able to read an entire position. For one thing, it gives a person the chance to notice internal inconsistencies, and look things up.
In addition to the aforementioned items listed in the title of Hibbard’s article, the Texas GOP’s document lists a lot more in their “Educating Our Children” section. For example, they also want to eliminate preschool and kindergarten, and require daily pledges of allegiance to the US & Texas flags (because that somehow makes one patriotic).
Ooh, get this:

“Classroom Expenditures for Staff – We support having 80% of school district payroll expenses of professional staff of a school district be full-time classroom teachers.”

You realize that means giving the ability to hire a number of part-time classroom teachers (and paraprofessionals if they opt to include some) who can be paid WAY less, which will keep a district’s budget way down. “Fiscal responsibility” as a loophole for loading up on part-time staff. Who of course often don’t get benefits — unfortunately, a common practice in education and other industries. (Yes, I’m calling education an industry.)
And of course, this next incredible ::head-desk:: concept that (for me) underpins a great deal of their platform:

“Knowledge-Based Education – We oppose the teaching of Higher Order Thinking Skills (HOTS) (values clarification), critical thinking skills and similar programs that are simply a relabeling of Outcome-Based Education (OBE) (mastery learning) which focus on behavior modification and have the purpose of challenging the student’s fixed beliefs and undermining parental authority.”

Because you know, mastering the subject material and learning how to think critically will undermine the GOP’s fixed beliefs and enable challenging authority. Any challenges to authority will be dealt with accordingly:

“Classroom Discipline –We recommend that local school boards and classroom teachers be given more authority to deal with disciplinary problems. Corporal punishment is effective and legal in Texas.”

Under the “Promoting Individual Freedom and Personal Safety” section, this concept continues as, Continue reading What Would Molly Ivins Say?

First on the Scene

A shiny green fly sponging up nectar from a fennel flower head
A shiny green fly sponging up nectar from a fennel flower head

The other day I was out in the garden taking pictures when a shiny green fly caught my attention.  Green bottle flies (Diptera, family Calliphoridae, genus Lucilia) are a bit larger than the ordinary house fly.  The adults feed on nectar and are pollinators, but because of their life histories, they fill some really interesting roles in the realms of human sciences.
One piece of news I found particularly interesting is related to newer use of Lucilia illustris in Maggot Debridement Therapy.  This $50 term refers to putting young maggots on a wound because will consume only dead tissue — fear not, they are reared under clean laboratory conditions.
[Pausing for readers to get past the “Eeuw, gross!” moment before moving onto the really interesting stuff.]
The news is that these larvae are exceptionally good at helping patients recover from bad MRSA infections.  A University Manchester study found that thirteen diabetic patients with nasty foot sores were able to heal up in an average of just 3 weeks, instead of the usual 28 weeks!  Not only do they clean up the dead cells that would just fester and decay, but they also get rid of the bacteria directly, and help stimulate the healing process.  As the article points out, this means that patients don’t have to deal with some of the side effects of strong antibiotics.  My daughter has dealt with several staph infections, including an episode of MRSA, so this ranks a big w00t!
Yes, these are the same sort of fly larvae, AKA blow flies, that help clean up dead animals in the environment.  Not only do the larvae need the nutrients from dead animal tissue to grow and mature, but the females need the extra maternal protein for egg production.  (Unfortunately, they are also pests in the world of sheep ranching.)
Which leads us to another famous use of flies, forensic entomology.  Calliphorid flies are attracted to blood or other fluids, and are the first to colonize a corpse. The rates of maturation for various species of flies have been extensively studied.  By examining the age of the larvae, comparing this with the conditions where the body was found, and the known temperature data to calculate the Accumulated Degree Days, the Post Mortem Interval or PMI can be determined.  The PMI is  how long it has been since the person died.
Blow flies may be “icky”, but the smallest of details can make great differences in the affairs of humans.

Requesting your thoughts, please

Howdy folks,
This morning I’m again in pain and rather stiff.  I know that many of you have rather specialised knowledge, and would appreciate your thoughts on getting diagnostics.
I have a number of conditions, both common and uncommon, including Raynaud’s, migraines, cough-variant asthma, tinnitus & hyperacussis and Auditory Processing Disorder, motor tics, and assorted neurological glitches including prosopagnosia (face-blindness) and ADHD. Getting these things diagnosed over the past decade has been wonderfully helpful for those that can be medicated, figuring out how to make accommodations for those that can’t, and being able to prove to others that I have documented reasons for difficulties, and that I’m not being lazy or stupid.
However, the crux of this post is that I also have Continue reading Requesting your thoughts, please

Potpourri

Updates on several stories:
In a post from almost a year ago (“That Kind“), I discussed three cases of discrimination against autistics. Cindy Earnshaw was an animal control officer and has Asperger’s, and is now filing a suit against her former employer, the city of Overland Park.
Another old post (the wheels of law grind v e r y slowly, indeed) was about “Waiting For GINA”, the Genetic Information Nondiscrimination Act.  The bill passed the House of Representatives last year, and has just been passed (unanimously!) by the Senate, and awaits signing by Dubya.  Keep your digits crossed or whatever …
More good news:  just in case you were flying ’round the dark side of the moon and somehow missed the news, Kathleen Seidel has won her Motion to Quash the absurd SLAPP-type subpoena against her, which also required information related to dozens of bloggers from her of the Neurodiversity.com Weblob blogroll, including myself. w00t!
An update to a recent post, “A shot in the arm, A slight kick in the butt” about vaccine hysteria and rising rates of highly-infectious and dangerous diseases.  A couple years ago we had mumps breaking out in several states, and now there is largest outbreak of measles since 2001, with at least 72 people in 10 different states around the country reported as having been infected (mind you, that’s just the rate of officially diagnosed and reported, which may be less than the actual prevalence), and of those people, 14 are so ill they had to be hospitalized.  The article states,

Before a vaccine was introduced in 1963, more than half a million people got measles in the United States and 500 died annually. Thanks to the vaccination program, measles is no longer endemic in the United States, and ongoing transmission of the virus was declared eliminated in 2000.

Of all the infectious diseases that can be prevented by vaccine, measles was and still is the most deadly, and is the cause of half of the one million deaths that could be prevented. The World Health Organization says that,

Children usually do not die directly of measles, but from its complications. Complications are more common in children under the age of five or adults over the age of 20.

The most serious complications include blindness, encephalitis (a dangerous infection of the brain causing inflammation), severe diarrhoea (possibly leading to dehydration), ear infections and severe respiratory infections such as pneumonia, which is the most common cause of death associated with measles. Encephalitis is estimated to occur in one out of 1000 cases, while otitis media (middle ear infection) is reported in 5-15% of cases and pneumonia in 5-10% of cases. The case fatality rate in developing countries is generally in the range of 1 to 5%, but may be as high as 25% in populations with high levels of malnutrition and poor access to health care.

I’ve also previously described the various fallacies around the conspiracy theories related to vaccines in my post, “Epidemics of bad science, vs Epidemics and bad science”. There have been studies done in four countries showing no causality between vaccines and increased rates of diagnoses of autism spectrum disorders.
Well, off to deal with the crisis du jour … more later.

More "Trap Bias"

Whenever I read statistics about the “increasing rates of autism”, I heave a big sigh. Those statements invariable contain a whole number of assumptions, many of them flat-out wrong, or at least unexamined. In the epidemiological data, there are diagnostic issues and census issues and statistical issues and of course, the inevitable agenda issues in the reportage of the census results and analyses. I’ve previously discussed a number of these problems, including incidence versus prevalence, and correlation versus causality in the post, “Epidemics of Bad Science vs Epidemics and Bad Science”
What I would like to address today is a related issue with diagnostics and perceived prevalence, meaning, “How do we know who has autism or AD/HD or a learning disability, and how many such people are out there?”
In entomology (and in other zoological branches) we have a concept known as “trap bias”. There are a number of ways of taking a census of an animal population, including using traps. A “trap bias” means that the kind of trap you use to census a population will limit the responders to your census, and thus create unintended biases in the results.
Now, if a few synapses in your brain just fizzled from that wordy definition, let’s try a simple example. Continue reading More "Trap Bias"

A shot in the arm, A slight kick in the butt

Last week I took two of our cats to the vet for their annual check-ups, including the Rabies, Feline Distemper, and Feline Leukemia vaccines. Some years ago we lost one of our cats to Feline Leukemia; the poor kitty died just a few months before the vaccine was available.
This Saturday past I reminded my gardening students that if they cannot remember when they last had a Tetanus booster, they they should go and get one, because a booster is recommended every ten years. The number of people to have survived Tetanus is vanishingly small; it’s pretty much a death sentence. It’s also easily prevented by a simple vaccine. Sure, your arm is a bit sore for a couple of days, but that beats dying an extremely painful and highly unnecessary death. As I reminded my students, “You get your pets vaccinated, you get your children vaccinated, so you should get yourself vaccinated!”
Except there are a few people who don’t want to get their children vaccinated. A drop in vaccinations means not only that some people get sick, but a drop in vaccinations also means a loss of “herd immunity”, meaning that most of the population is not immune, so there are enough people who can catch and then transmit the disease. When you make a decision to not immunise, you are not making a decision that affects just you and your children. You are a making a decision that affects everyone else in your community.
That is why we had recent epidemics of mumps and measles in the UK and the US, leading to hundreds of sick people, and some who were disabled or killed. Because I work with students in various schools, I get lots of exposure to viruses. I had not previous had a mumps vaccine or the disease, so during those epidemics I went and got the MMR. Now I’m protected against Mumps, Measles and Rubella (even though I had the other vaccines in ’63 and ’70, the combined vax helps boost my immunity). I also went through the Hepatitis B series that year.
So yes, I’m a big proponent of vaccinations.
And no, I do not subscribe to the hysteria generated by a few noisy, well-meaning but seriously-deluded or paranoid people who believe that there is a world-wide conspiracy Continue reading A shot in the arm, A slight kick in the butt

Mystery Jam and Other Achievements

I lost a label. I don’t mean the sticky label missing from the jar of “mystery jam” in my pantry (the goo is yellow, so I’m pretty sure it’s last summer’s ginger-pear jam), but rather a diagnostic label. For many parents, one of the highlights or milestones in life is for their child to “lose the label”.
Once-upon-a-time the getting that label (or labels) was highly important, so everyone knew what the problem was (well, sorta) and so the child could get some kind of educational or therapeutic services. Getting the label was oft times a relief because it meant that Someone Official had recognised that the child’s problems were not due to bad parenting, moral failure, or general laziness on the child’s part. Usually parents suspected something was “off” for quite a while, so having that validated is a bit of a relief.
Of course, then once the suspicions are confirmed, there are often new kinds of feelings while adjusting to the new daily reality. Frequently there are skirmishes with school districts or other bureaucracies. Sometimes there’s a bit of a grieving process for not having the perfect little darlings imagined during pregnancy. Some families have issues with relatives not understanding, accepting or even “believing in” whatever problem with the child is dealing with. Nasty episodes can erupt in extended families if one of the parents is accused of “causing” the problem or bringing “bad blood” to the lineage.
And of course, a number of parents eventually realise that the child’s issues are echoes of some of their own issues. Going through these things is very complex, sometimes stressful, and often enlightening. Having a child with a disability does not automatically tear a family apart or make the siblings resentful; depending upon how the parents respond to the issues and to each other, it can strengthen the family members’ ties to each other, and lead people to be more compassionate and less judgmental.
So losing the label can mean that the family has (finally!) managed to get beyond a lot of those stresses. Or so it seems.
But what does it really mean to “lose the label”? It can mean a number of things. Continue reading Mystery Jam and Other Achievements