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.

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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, Read the rest of this entry »

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 Read the rest of this entry »

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. Read the rest of this entry »

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 Read the rest of this entry »

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. Read the rest of this entry »

No wait, it’s not mercury, it’s — lead!

A four-year old autistic boy, Noah Breakiron, is in the news for being cured of lead poisoning.

“We have a child here who is virtually indistinguishable from his peers and that’s certainly not what he was a year or two years ago,” added Pediatrician David Berger, MD.

The article also says,

Because the symptoms of autism and lead poisoning are so similar, Noah’s parents say they will never know which one came first, autism or lead poisoning.

Huh? A child might possibly have both autism and lead poisoning, but they are not the same, nor are the symptoms similar. Let’s review a list of possible symptoms of autism, as described on the Mayo Clinic page (not all autistic children will exhibit all these traits): Read the rest of this entry »

Epidemiology Bass-Ackwards

Again.

A short news item caught my attention today. Unfortunately, it looks like a fabulous example of bad science, with lousy sampling methods, correllation trying to equal causality, and a heavy dose of confirmation bias. Add in a big dose of well-connected media personalities, and it’s absolute chum-bucket for indiscriminate news sharks.

Dr Lawrence Rosen thinks there is probably some kind of “environmental problem” causing an “autism cluster around St. Anthony’s school in Northvale”, New Jersey. Why is that? “The initial study included interviews with 24 current or former school employees who had children after working at the school. Their 42 offspring included 24 with developmental disorders — and 10 of them have autism.”

Oh, and “The school serves children with autism and other learning disabilities.” Are we not surprised. ( /dry humor )

Saying that something around the school “causes” large numbers of autistics (et cetera) is like saying that swimming pools “cause” large numbers of bikinis. Read the rest of this entry »

All in the family

Sometimes after a child gets a diagnosis (or diagnoses) the parents begin to realise many of the same issues from their own childhoods, and on through adulthood. In our family it took the opposite route. It took years to really see the aspie qualities of my kid, partly from unfamiliarity, and partly because in a geeky family like ours … most of those qualities are “normal”. Not until the teen years did the social issues, the APD issues, and ADHD-related educational issues really become unavoidable. The tics went away after several years, as happens sometimes. But I think there was less “denial” as there was unawareness and a sense of internal normalcy: “this is just the way we are”.

A very nice article by Benedict Carey illustrates this: Your Child’s Disorder May Be Yours, Too

Mr. Schwarz, a software developer in Framingham, Mass., found in his son’s diagnosis a new language to understand his own life. His sensitivities when growing up to loud noises and bright light, his own diffidence through school, his parents’ and grandparents’ special intellectual skills — all echoed through his and Jeremy’s behavior, like some ancient rhythm.

His son’s diagnosis, Mr. Schwarz said, “provided a frame in which a whole bunch of seemingly unrelated aspects of my own life growing up fit together for the first time.”

It can alter the present, too, if parent and child have enough common ground. Mr. Schwarz, the software developer in Framingham, said he became in some ways like a translator for his son, who’s now 16.

“I think there are a lot of parents of kids with these diagnoses who have at least a little bit of the traits their kids have,” Mr. Schwarz said. “But because of the stigma this society places on anything associated with disability, they’re inhibited from embracing that part of themselves and fully leveraging it to help their kids.”

Our understanding of diagnoses mean changes over time, and we leave or entirely skip that stage of grieving over not having a promised “normal” child, or possibly even viewing the issues as horrible things that must be cured at all costs. Instead, we find that our children are different rather than damaged, and that we ourselves are oft times different as well. We move from grief to acceptance, and realise that acceptance is not the same thing as resignation.

In fact, we do not have children with broken wings, but we are in many ways flocks of different kinds of birds, not unlike the diversity of finches that Darwin found in the Galápagos, all adapted for slightly different niches. After all, we don’t all need to be penguins attired in identical tuxedos.

Absolute Nonsense

Over in England, Mary is working to get her son assessed for ADHD, Tourette’s Syndrome and Asperger’s. I would think that the TS would be a fairly easy diagnosis for their specialist to make, especially if various people at home and school have documented lists of various motor & vocal tics. The ADHD diagnosis can sometimes be trickier, if only because the more noticeable tics tend to overshadow things, but given the frequency with which these syndromes are co-occurring (I hate the term “comorbid”), no one should be surprised. Likewise, AS also tends to come in these “package deals”.

But the reason I mention all this is to comment about one of the aspects of the interview process that she mentioned:

They did not think, for various reasons, that he has Asperger’s, mainly because he is highly creative and also has a sense of humour (doesn’t take everything literally as most asperger people do).

Boy, talk about literal-mindedness! There’s nothing like absolutes to mess up diagnostics. When people start throwing around concepts like “always” and “never”, I get the impression that their experiences with different students (or clients, or adults, or children) is limited to memorising narrow diagnostic criteria and the obligatory (brief) psych rotation during training, rather than with numbers of rather diverse, real people.

Asperger’s or autistic kids do not:

  • always take things literally;
  • never have a sense of humor;
  • always have flat affect;
  • never make eye contact;
  • always drone on incessantly about their special interests;
  • never have friends;
  • are always computer or math whizzes;
  • always demonstrate stereotypical flapping, rocking, or stimming;
  • or lack imagination — as the man himself said:

“It seems that for success in science and art, a dash of autism is essential.”
~Hans Asperger

After all, everything is relative — we’re comparing how the person is compared relative to their peers. Likewise, if the family has members with TS, AD/HD, AS or any other co-occurring conditions, well, it shouldn’t be too hard a diagnostic stretch to consider that the person of enquiry may well have similar issues!

As a pal of mine used to jest, “There are absolutely no absolutes.”

Update

Woah, the timing of this AP news article was incredible, “Parents avoid vaccinations by claiming false religious exemptions”. It’s an excellent follow-up to my previous post on “My student is missing”. (My student came back the next day.)

Many states are seeing increases in the numbers of parents who do this.

“Do I think that religious exemptions have become the default? Absolutely,” said Paul Offit, head of infectious diseases at Children’s Hospital in Philadelphia, one of the harshest critics of the anti-vaccine movement. He said the resistance to vaccines is “an irrational, fear-based decision.”

Of course, the problem with highly infectious diseases is that no one is an island. You’re not just making a decision about your own health.

But public health officials say it takes only a few people to cause an outbreak that can put large numbers of lives at risk.

“When you choose not to get a vaccine, you’re not just making a choice for yourself, you’re making a choice for the person sitting next to you,” said Lance Rodewald, director of the CDC’s Immunization Services Division.

My student is missing

Just one of my students. I heard that he didn’t come to school today because he’s not up on all of his vaccinations. I don’t know if that is something intentional by his family, but I kinda doubt it — he’s in high school, which means he’s had years of previous vaccinations accounted for. Probably people got busy and forgot to take him in to the doctor or the county clinic to get whatever’s due at his age.

Like other school districts in the state, this one requires that the students be fully vaccinated per the list issued by the state health department. There’s a 60-day period after the beginning of the school year for students to get caught up, and after that date, students don’t get to attend until they’ve done so. (There is also an exception clause allowed by the state, requiring that abstaining parents or guardians to provide a medical exemption signed by a MD/DO every year, and they sign a religious exemption. Note that the doctor has to be an actual physician, and that the child is getting regular medical attention, to help insure some baseline of health monitoring. Note also that the parent also has to claim exemption for religious reasons, not just because they think that vaccines might be more dangerous than the long list of highly infectious and sometimes debilitating or deadly diseases.)

So naturally, my children have had their various vaccinations over the years. In recent years I’ve also had the MMR, at the tender age of 45. Why? Read the rest of this entry »

Waiting For GINA

This is one of those days when it feels like you’ve slid into some cheesy sci-fi flick on the late, late movie channel. I’m waiting for GINA to happen. For some people, “ignorance is bliss”. It’s easier to be somewhat fatalistic and decide that one’s fate is in divine hands. Que será será. (Whatever will be, will be.) However, many people would like to have some idea of what’s lurking around the corner, even if it’s only the possibility.

The possibility of what? And why are people waiting for GINA? Read the rest of this entry »

Epidemics of Bad Science vs Epidemics and Bad Science

Here’s a hot topic constantly resurfacing in the news, especially with the Omnibus currently proceeding at the US Court of Federal Claims, to wit: Is autism caused by vaccines? I won’t pretend that I’m going to capture everything in this controversy; there are too many players in the drama. (Autism Diva is keeping track of the daily news on the hearing.) However, this does make for an excellent case study in the scientific method. We get to look at concepts like incidence & prevalence, correlation vs causality, testimonials vs evidence-based medicine, and some general concepts in epidemiology. Could we possibly have any more fun?! (tongue-in-cheek joke)

When you read about autism, something noted most everywhere is the increasing numbers of children diagnosed. Surely, people say, there has to be something causing that to happen!

The whole vaccines-causes-autism story starts back in 1998, Read the rest of this entry »

Are You Registered?

A registry is a listing organizing information. People create registries of all sorts of things, from animal pedigrees to copyrights and domain names. We register for happy things, like our gift preferences with shops when getting married, or anticipating the birth or adoption of a child.

Medically, people register to receive organ donations. Companies may register recipients of prostheses in case there needs to be follow-up care. To prevent or manage epidemics, registries of affected individuals may be kept to monitor disease containment, treatments, and mortality.

People also register pets to help ensure their return. We also register things, generally for licensing and taxation purposes, as some of these can be dangerous items:

Automobiles
Motorcycles / Motorbikes
Aircraft
Boats
Guns
Televisions (dangerous item: yes or no?)

Many landmark events in our lives require moving datasets from one office to another. College students make a number of trips to their uni’s registrar to manage the appropriate transcript transfers. College students with disabilities may choose to register with the uni’s access office if they are to receive accommodations. (Naturally, doing this requires even more paperwork.) Part of getting one’s diploma means that you are now a Papierkrieg veteran (German: “paper war” i.e. bureaucracy).

Once graduated, people in some licensed occupations may be registered to help ensure that agencies can successfully maintain optimum staffing, and people will be able to secure jobs as needed.

To receive various legally sanctioned benefits, people also register major personal events with various local or national government agencies, to acquire the necessary Very Important Pieces of Paper — after all, nothing officially exists without documentation! All but the last two of these are events that people are generally glad to mark in their lives, aside from the bureaucratic hassles associated with such:

Birth (someone else’s)
Marriage / Civil Union
Divorce / Annullment
Travel passport
Work visa
Business partnership
Military service
Death (someone else’s)

Speaking of death, on the darker end of things, groups of humans have been registered for others to monitor who these people were, and where they were. The rationales for these kinds of registration were that the categories of people were a concern to the authorities because of who or what they were. They didn’t have to be proven dangerous, they just might be because they were different. Read the rest of this entry »

International ^DISABLED Women’s Day

Today is International Women’s Day. This year’s theme is: “Ending Impunity for Violence against Women and Girls”

People with disabilities have a variety of difficulties across their lives, not just from the intrinsic problems associated with the disability, but also the handicaps they face socially. Disabled people are much less likely to finish secondary school, even less likely to go on to further education in university, have more difficulties acquiring jobs compared to their equally qualified non-disabled peers, and therefore generally earn less. Around the world, women in general also are much less likely to finish secondary school, even less likely to go on to further education in university, have more difficulties acquiring jobs compared to their equally qualified non-disabled peers, and therefore generally earn even less.

Not surprisingly disabled women fare worse than disabled men. But hey, you don’t have to take my word for it. According to a report by the Independent Living Institute, disabled women:

  • Data referring to the E.U. shows that percentage of employment in men without disability is 76% versus 36% in disabled men. Regarding women, the percentages vary from 55% in non-disabled to 25% in disabled women.
  • Studies done on specific groups (autistic, for example) show that they are more inclined to remain in institutions for longer periods of time than men.
  • There are a lot of barriers that make access to birth control and family planning very difficult, such as physical barriers, communication barriers etc.
  • In hospitals disabled women are used as models for trainee doctors, without previously asking them for their permission. Videos and slides are taken of disabled women to be used as teaching aids without any control over their use.
  • There are permanent debates on the role women are supposed to play, and that assigned to disabled persons. As a result, while women in general are pressured by society to motherhood, disabled women are forced into not having children, and this many times leads to unauthorised sterilisation, or denial of adoption on the basis of the “incapacity of the mother” to take care of them adequately.

In theme with this year’s International Women’s Day, there’s also the issue of violence against women. Again, women who are disabled fare worse off than those who are not. Furthermore, it is even more difficult for women with disabilities to recognise, prevent or stop such problems.

The report goes on to describe the various kinds of violence that happen to women with disabilities. These are described as Active Violence (physical abuse, emotional abuse, sexual abuse, economic abuse) and Passive Violence (physical neglect, emotional neglect). These can be manifested in the following ways:

Physical abuse:
Any direct or indirect action that can damage the life, welfare or health of disabled women, provoking pain, unnecessary suffering or health deficiency.
Manifestations:
* Aggressions in different parts of the body
* Unjustified administration of drugs.
* Restrictions of mobility.
Alert Signs:
* To be found in sedative or nervous conditions.
* Motor dysfunction not due to their disability.
* Signs of physical violence: marks in wrists and ankles, fractures, bites, internal damages, burns, etc.
* Detriment in their remains of physical capacity.

Emotional abuse:
Behaviour model that results from damage to the welfare and emotional balance of a disabled woman.
Manifestations:
* Isolation, prohibiting or limiting the access to means of communication (phone, mail..), to information and to keep in contact with other relatives and neighbours.
* Oral cruelty, by means of insults, constant criticism, making fun of their body, punishments in the presence of others.
* Over protection.
* Speaking, deciding or giving opinions in her name.
* Intimidation, and /or emotional blackmail.
Alert Signs:
* Depression.
* Communication and interrelation difficulties.
* Insecurity, and low self-esteem.

Sexual abuse:
Actions that are a sexual aggression towards disabled women, and can produce physical or emotional harm.
Manifestations:
* Rape.
* Sexual vexation or humiliation.
Alert Signs:
* Marks or/and injuries in genitals.
* Fear to relate with certain people.
* Undesired pregnancies.
* Venereal diseases.

Economical abuse:
Actions that pursue the loss of control and rights on properties, money or family shared inheritances. The use of the image of a disabled woman against her will, to gain money for third persons, is also considered economic abuse.
Manifestations:
* The use of disabled girls or women in mendacity.
* Employing disabled women in poorly paid jobs usually linked to clandestine employment.
* Limiting the access to information and management of personal economy.
* The use of money as a sanction.
* The family denies the access to external economic resources (jobs, grants..).
Alert Signs:
* Depending too much on others.
* Little expectations regarding herself and her personal or professional projection.

Physical neglect:
It is understood as such, the denial or privation of the basic aspects to keep the body in good shape, in relation with health, hygiene and image.
Manifestations:
* Negligence in feeding.
* Personal carelessness.
* Neglecting hygienic measures.
* Lack of supervision.
Alert Signs:
* Malnutrition.
* Frequent illnesses not caused by disability.
* Inadequate cloths regarding sex, climate, and the persons’ handicaps.
* Dirty clothes.
* Long periods of time without supervision.
* Physical problems worsen due to lack of treatment.

Emotional neglect:

Those actions that deny or deprive attention, consideration and respect towards disabled women.
Manifestations:
* Ignoring their existence.
* Giving no value to their opinion.
* Feeling ashamed about them.
Alert Signs:
* Lack of interaction.
* No motivation concerning their personal development.
* Scarce or no participation in family or social activities.

The study came up with the following conclusions:

  • Many disabled women see themselves as subjects of maltreatment and abuse, while society ignores the problem.
  • Many disabled women do not see themselves subjects of violence, because they consider these situations habitual in their lives and associated with disability.
  • Disability is a risk factor when suffering abuse and maltreatment situations, which added to the fact of being a woman, increases the risk to higher rates than those of the violence suffered by women in general.
  • Women with sensorial, learning, and communication problems, are more likely to suffer abuse and violence.
  • Not having the traditional female roles assigned contributes to lower self-esteem and increases vulnerability, elements that favour becoming an object of violence.
  • Violence against disabled women shares common characteristics with the female collective, but has specific characteristics as well.
  • Most professionals in charge of counselling and interventions in maltreatment to women ignore that many disabled women are in the same situation. Either because information does not reach them, or because they do not typify as violent acts those they believe associated to disability.
  • Depending on others to cope in daily life increases the risk of being objects of violent actions. This risk is believed lower when personal assistance is given with former professional training and psychological aptitude.
  • Violence against disabled women has more to do with the fact it is considered an extenuating circumstance that these actions are perpetrated against “a faulty being”, than on using a woman’s body as a demonstration of power and control.

The report goes on to describe specific details from several countries. Near the end, the authors describe some of the difficulties that disabled women face when trying to extricate themselves from abusive situations:

It is extremely difficult for any abused woman to leave a situation of abuse. A woman is hit by a husband or a partner an average of 35 times before she calls the police. Battering undermines self-esteem and can make a woman feel she is somehow responsible for her own abuse. For a woman with a disability, this situation is even more difficult. She may be dependent on her abuser for affection, communication and financial, physical and medical support. If she reports the abuse, she may risk poverty and loss of housing and support. She may fear she will not be heard or believed is she speaks out. She may face further violence, institutionalisation, or loss of her children if she seeks help. She may not have access to information about existing support services for victims of violence. Even if she has this information, many sources of support may not be accessible. She may not be able to contact the police or women’s shelters because they do not have communication devices as telecommunication devices for the deaf. She may not be able to physically leave her situation because of a lack of accessible transportation. Her lack of options may leave her feeling so powerless and despairing that suicide seems the only viable choice. And if she seeks help in dealing with suicidal thoughts or attempts, she is unlikely to find counselling which takes account of her own reality. And so she is left isolated and possibly suicidal.

Just as the problems are multifaceted, so are the solutions. The report recommends:

  • Abusive behaviour needs to be acknowledged as a serious social and in some cases criminal problem, rather than being considered a private matter.
  • Protocols need to be developed for institutions to screen potential employees and volunteers.
  • Protocols need to be developed to address the abuse that occurs in institutional settings.
  • Community living alternatives need to be made available for women with disabilities.
  • Courses need to be made accessible and available to women with disabilities (in self-defence, assertiveness training, and sex education).
  • Appropriate suicide consoling which meets the special needs of women with disabilities needs to be made available.
  • Transition houses and other existing support services need to be made accessible, and frontline workers in shelter facilities need to be sensitised to the needs of women with disabilities.
  • Women with disabilities need to be hired to provide this training and to work in these centres and
  • Women in all communities need to work together develop a co-ordinated approach to dealing with the abuse of all women.

Centenary Retrospective

“This process of the good life is not, I am convinced, a life for the faint-hearted. It involves the stretching and growing of becoming more and more of one’s potentialities. It involves the courage to be. It means launching oneself fully into the stream of life.”
~ Carl Rogers

Wow. The other day I was looking at my blog stats, and it said that I had 22,000 hits. I have also recently written my 100th post since June; that’s close to thrice a week, for the mathematically disinclined. So I thought I would take a step back and review what has gone by, to see what kinds of topical trends emerge, and pull up some of what I think are the better posts, for those of you who are newer visitors.

Bloggers are usually loquacious and opinionated, a description I do not fail to meet. But why do I blog? Some bloggers just natter about their lives, others blog as an outlet for kvetching, some are pushing a specific agenda, and still others like to analyse what they see. I do a little of all the above, but mostly I like to analyse. I am less concerned about persuading you than I am about giving you something to think about. After all, if we all believed the same things, the dialogues would get pretty dull!

Now that there is data from which to draw a pattern, what kinds of things do I blog about? In a way it is hard to sort posts into single categories, because topically there is an n-dimensional hypervolume of intersecting sets. But as an approach, I like to explore themes from personal experience or news events, and also from philosophical perspectives. I feel that philosophy loses some of its significance without grounding it in the phenomenal fields of people’s lives. And telling stories of lives without examining the what and wherefore of those events falls short of the ultimate value of storytelling: revealing the patterns in human relations, and learning from them.

Some of the greater categories revolve around education, from both student and instructor perspectives, and they revolve around the politics of disability and advocacy. In contrast, there are some themes that connect those categories. One of the most important themes is taking the traditional understandings of how social systems work, and taking those apart to reveal very different perspectives on what is happening.

These systems include how we communicate, such as when the language of “choice” is really just a distractor, or doublespeak meant to transfer the apparent (symbolic) power to the one person who in actuality has little power over the situation. These systems also include power paradigms, including how we “help” people, how people miss the mark when trying to create “inclusiveness”, and why pity is such a evil force because it creates distance between people. (There is no need to congratulate me for having “bravely overcome” the insults and artificial obstacles that people put in my way.)

I also look at how the assumptions we make determine how we define groups of people, from the way that we create diagnostic labels, to the sometimes-absurdities of “person-first language”, and concepts of “tolerance”.

In the end, we don’t need better ways of “beating” the system, because we are all part of the system, and the beatings must stop. (They haven’t improved morale yet.) What we need are ways of overhauling the system by sidestepping these terrible games and introducing different ways of working together.

Our perceptions of the world influence how we act, including how we view and understand others. Sometimes people mistake better identification or newer kinds of identification with “epidemics” of autism, AD/HD et cetera. But I bet if we’d had these kinds of identifiers decades ago, a lot more of us would have been better understood. Hyperactive kids are kind of hard to miss, even those who otherwise do not misbehave. (You wouldn’t believe how many ways there are to sit inappropriately!) More boys than girls are diagnosed, but I have to wonder if that isn’t due more to diagnostic criteria than actual prevalence rate. Why didn’t we see kids with these kinds of “needs” in previous decades? Partly because some of those kids didn’t even go to regular schools — they were kept at home or in institutions. Those who did go to regular schools just had to struggle along. They rarely had IEPs and such because their parents didn’t – couldn’t – ask for services that simply did not exist.

When we make these changes in understanding systems and in our perceptions, they can be outwardly expressed by seeking to become a better advocates. Being able to create a new rôle for one’s self includes being able to learn about the various rôles that others have played. (But just try to find sources on disability studies at the local bookstore!) Advocacy requires overcoming inertia and moving into commitment, and moving into commitment and inclusiveness. We also have to be able to recognise our own sources of ability and power, especially if we’ve been convinced otherwise.

Advocacy is complex, and the concerns of parents for the futures of their disabled children is an important part of that. Unfortunately, people whine about how hard it is to have an autistic child, or any kind of exceptional child. All too often there are terrible news reports about parents who have killed their handicapped or autistic children because they were such a horrid burden. Even more horrifying is when the press perspective or quotes are full of sympathy for the murderer because killing your own child is “understandable” because a person can’t help but be insanely stressed from dealing with the child’s abnormality.

It’s hardly not a new trend. But this millennia-old attitude does a terrible disservice to disabled people everywhere to be cast as either devils or angels. It is dehumanizing, and removes us from our humanity, and thus our basic human rights. In light of the fact that many things have a genetic basis, then hating disabilities in our children involves a curious kind of denial and self-loathing.

Distraught parents also need to understand that there is a difference between getting cured and being healed. The unresolved grief leaves parents susceptible to errors of judgment, and these well-intended but scientifically ignorant people who buy into these things are being duped by charlatans, sometimes with loss of life as well as with great monetary expense. Then the problem is propagated because those well-intended but scientifically ignorant people become meme agents, earnestly spreading the false gospel. Meanwhile, the rest of us are left to weed out the “Astroturf” of faux grass-roots efforts.

Advocacy efforts include those in our schools, and involve administrators, educators, parents, and the students themselves. Sometimes teachers and parents worry about school accommodations because they fear it will leave the students unready for when they have to venture into the “real world”. Or, by misunderstanding the differences between equity, equality and need, teachers fear that giving accommodations “wouldn’t be fair” to the other students.

Parenting our students with learning difficulties is not easy – the traditional methods do not work, which is often why the students end up in “special” education. In turn, the students also get frustrated, and attempts to deal with the unmotivated student can sometimes create further problems. We also have to be careful to distinguish between challenging our students, and just making things more difficult for them. Distinguishing between cause and effect in misbehaviour is important – we need to address the causes to resolve problems.

The teaching end of things can also be rife with issues, and college professors can sometimes fall prey to pedagogical myths. Equally absurd is how learning difficulties are often not recognized until the student has been failing or near-failing for a while, thus allowing the student to get further behind and more entrenched in negative mind-sets. On the flip side, we identify exceptionality by contrasting it to what’s common for the group, or by how well a person functions. But what if our sampling group is far from average, or if the environment is less disabling?

Tutoring and teaching is another means of engaging in advocacy, and one of the best means I have is to share with my students the tools for how they can solve new kinds of problems in the future, for themselves and by themselves. It also gives me the opportunity to constantly learn from my students. During this co-educational process, we often need to figure out where in the learning process they are getting stuck, then come up with different ways of helping them learn new information, and different methods for studying. Sometimes the educational changes we make can be as simple as the way a test is typed up, making it more accessible to all the students. The way the audio-visual equipment is set up also makes a significant difference, including the kinds of computer monitors and lighting used. As a tool for engaging your students’ attention, novelty can be a big help. It can also backfire in unexpected ways…

On the more personal scale, I’m always seeking better ways of dealing with my own challenges of “Executive Functioning”, like dealing with all the stuff, stuff, stuff that piles up, losing something in the Dreaded Safe Place, coping with the inertia of task paralysis, or just getting “stuck” when the Plan B falls apart or I unexpectedly get engrossed in something. In worse cases, this means pulling myself out of an awful case of the Betweens, which condition you won’t find listed in any manual, but one that any ADD or autistic person will surely recognise. Regardless, it still helps to remember that strategies for compensating are just that – and that when there’s too much load on the system, those strategies won’t all succeed. That makes it difficult for me, but sometimes others’ lack of understanding is the greater problem.

When I sat and contemplated my place in the grand scheme of things, I found myself wondering just how it was that I could be “doing things the wrong way” and yet still be producing the right results. Were the processes really as important as the results? Doing things “normally” is very important to the general public. People with a wide variety of differences go to extreme effort trying to “pass for normal”, but this can be perilous. Some parents spend great effort to ensure their autistic children learn how to do “good eye contact”, but this may be a poor goal for some unexpected reasons. People can get hung up on developmental timetables, or they worry and wonder why their child likes to spend lots of time lining things up (it’s a good thing, really).

Adults can come up with some pretty off-the-wall assumptions about what is, or is not, going on in a child’s head; we cannot always assign mental processes to the results we see. Then there’s the situations that an earnest-yet-clueless ADHD or Aspie kid can find themselves in, such as failing to cheat. The really scary part is how these children who have difficulties socialising with their peers will fall prey to bullying and abuse, and general depression. Then we grow up into adults, and there’s the whole sticky territory of trying to make Small Talk, and the repercussions of just having a different sense of humor.

On the lighter end, a few posts are just for fun; about once a month there’s a “Recess”. Recess means we take a break and play – it’s important to do that once in a while. During dinner our family discusses why “resistance is fruitile, and how to be “underly pedantic”. Meanwhile, I have fun with repeating words, and enjoy taking photographs of improbable things.

My thanks to you for stopping by, and please to leave comments!

andrea

Where’s My Shelf?

I was at one of those big chain-bookstores the other day, with a gift certificate burning a figurative hole in my wallet, just begging to be used. I’d even planned ahead for the inevitable “Error 404: File Not Found” of name retrieval, and written down a list of authors and titles of the dozen books for which I was looking. Not that I had really expected to find all of those books, but not that the gift certificate was that big anyway.After pausing to check out all the spiffy bookmarks (“Ooh, shiny!”) I wandered over to the rack between sociology and history.

“Women’s studies, Men’s studies,” (small section, that) “Gay/Lesbian studies, African-American studies, Latino studies, Hawaiian Islander studies,” (wow, we’re no where near the Pacific) “Native American studies … History of Ancient Egypt.”

Wait a minute, missed it. Given my profound ability to be “nose-blind” and miss seeing something right under my nose, I back-tracked and started over. Nope. Okay, maybe the books I’m looking for are filed under some other category. Just because something makes sense to me doesn’t mean it’s true – after all, the grocery keeps the baked beans by the tins of luncheon meat rather than with the tins of vegetables where I would expect to find them …

After duly waiting in the Information queue, I hand my list to the clerk who patiently pecks the names through the store’s search engine. By the time she has reached the end of my list, she is frowning in sympathetic frustration, and informs me that they only have one of the books, which has to be ordered from some distant warehouse. I politely decline, realizing that instant gratification is simply not going to be had, and decide to do my own search-engine pecking with the county library system.

What I found odd was not that they did not have the particular books for which I was searching – I tend to read offbeat stuff, not the latest poolside romance. Rather, what I found odd was that there were not any books on disability studies to be had at all. The section simply did not exist anywhere in the store, not between sociology and history like the other group-studies, not in the psychology or the special education or the history sections.

You want to hear some interesting numbers?

In the United Kingdom there are 9.8 million people with some sort of disability, about 1 in 7.
In Canada there are 3.6 million people with some sort of disability, about 1 in 8.
In the United States there are 49.7 million people with some sort of disability, about 1 in 5.
(As with any epidemiological information, census definitions may differ slightly.)

Either way, that’s a LOT of people; the largest minority within most populations. So how the hell do people go about referring to “them” like they’re rara avis, some minor, marginal sector of sub-humanity? Everyone must know several people with disabilities, whether they realise it or not.

So why are disabled people so invisible and neglected by history? The answers are complex. Part of this is due to the fact that the largest minority is also the most diverse: disabled people include babies, the elderly, people with sensory differences such as the Deaf or blind, people with learning disabilities, people with cognitive processing differences such as autistics or the faceblind, people with developmental or acquired physical differences such as cerebral palsy, people with chronic health problems … Some disabilities are highly visible, and many are invisible.

Another part of the issue is that disability is something feared, shunned, and to be avoided. It is seen as abnormal, defective, deviant and pathological. Disabled people until very recently were shut away in institutions (and often still are), were not schooled (and often still are not) or were segregated in separate schools (and often still are), and no matter what the disability were seen as imbeciles and therefore not deserving or needing status as full citizens capable of making their own decisions (and often still are). The disabled are considered only as, and are seen only as patients and clients. They weren’t people to be considered as a positive and common group, or a social force.

But just as one can now find histories and university programs and shelves of books about Women’s Studies, and find histories and university programs and shelves of books about Gay & Lesbian Studies, we can now find find histories and university programs and –

– well, histories and a few university programs about Disability Studies.

I’m going to buy myself another bookcase. I need more shelves.

Psychiatric dysaethesia

We recently rented the video C.S.A., a mockumentary about the semi-fictional history of when the Confederate States of America won Civil War/ Northern War of Aggression. It’s a profoundly (and appropriately) disturbing film on a number of levels. This isn’t a film review, so you can look up more details about it on Amazon, the IMDB, or the official film Web site. It’s a hell of a good video, in the literal sense.

What makes good satire and mockumentary is the admixture of fiction and reality. Fiction (especially science fiction) provides the distance of unreality for us to be able to think about and discuss things that are often too difficult to deal with in full-blown reality. Reality-Lite, as it were. Not that there is anything “Lite” about slavery and the numbers of other issues woven into the story line.

But on blog-related matters, this flick gave me yoin, which is a Japanese word referring to the ongoing internal reverberation you get from something, even after the moment has passed. They made mention of Drapetomania, and apparently this was one of the reality-nuggets. There it is on Wikipedia:

“Drapetomania” was a psychiatric diagnosis proposed in 1851 by Louisiana physician Samuel A. Cartwright to explain the tendency of black slaves to flee captivity. As some slave owners felt they were improving the lives of their slaves, they could not understand the slaves’ desire to escape.

There’s not a great deal of discussion of this; the entry also explains,

The diagnosis appeared in a paper published in the New Orleans Medical and Surgical Journal, where Dr. Cartwright argued that the tendency of slaves to run away from their captors was in fact a treatable medical disorder. His feeling was that with “proper medical advice, strictly followed, this troublesome practice that many Negroes have of running away can be almost entirely prevented.” Cartwright proposed whipping as the most effective treatment of this disorder. Amputation of the toes was also prescribed.

Cartwright also described another disorder, Dysaethesia Aethiopica, to explain the apparent lack of motivation exhibited by many slaves, which he also claimed could be cured by whipping.

Wow. So here we have this doctor ascribing a natural human reaction to having a psychiatric condition, and also prescribing the “appropriate” treatment for such. We can easily imagine some alternative history where drapetomania is a regular entry in the DSM. After all, homosexuality used to be included in the real DSM.

Not every reaction or experience in the human condition is a psychiatric problem, syndrome or disorder. The DSM is useful as dictionary — it’s difficult to discuss things when people aren’t even talking about the same things, so some kind of mutual definition is necessary for a start. We also have entries that go from descriptions of the problems people have in life into the realm of Named Conditions.

Take ODD: Oppositional Defiant Disorder. Yes, there are people who are short-tempered, argumentative, annoying, refuse to follow rules, blames others for their problems, are tetchy and so on. This is a definite set of bad behaviours, and there are some people who seem to be entrenched in acting these ways to the point that it seems to be a regular part of their personalities. Do real people act like this? You bet; some of my students act like this. But is it an actual disorder? Some kind of neurophysiological problem?

That I’m not so sure about. There may well be some kind of, or several kinds of actual conditions that can result in a person acting like this, but that’s not the same thing. ODD is a good description of someone who is handling themselves badly (for any number of very real reasons), but I wouldn’t classify it as an actual “thing”, a neurophysiological problem. (Then again, we may find some kind of weird dysfunction in the brain caused by genetics or some yet-nameless virus or prion. Life has a way of throwing us curve-balls on a regular basis.)

Is every reaction to problematic aspects of life worthy of being identified as a morbidity of some sort, and assigned a billing code for the benefit of insurance companies?

The other disturbing part about “drapetomania” is the telling politics of power. You see, only Negroes were afflicted with drapetomania. Only gays and lesbians were afflicted with homosexuality. Once homosexuality is removed from the DSM as a disorder, then we suddenly have millions fewer patients with “mental illness”. No one was “cured” — they just weren’t considered ill any more.

When we find that we can’t understand why someone does what they do, does it really mean that they gone ’round the twist in some way? Or are are they just reacting to what might be an intolerable condition that we’re not properly recognising?

And if thy hand offend thee

And if thy hand offend thee, cut it off.
~Mark (ch. IX, v. 43)

The current research into the genetic basis for autism includes not just understanding it as an intrinsic and permeating neurological difference, but is straying into the realm of being able to screen for babies carrying those genes, just as one can screen for (and thus not bear) babies with Down’s Syndrome.  (It should be noted that Down’s syndrome is a nonheritable genetic difference, but many other conditions are heritable.)

There’s an element of hatred in destroying an aspect of one’s self. The hatred is not always visible as stemming from fear, because the inherent paradox can be repressed. This paradox of virtue by self-hatred comes from a double-bind disguised as social responsibility: “Don’t you want to have a healthy baby?” How could this seemingly innocent question be a double-bind, an unwinnable situation? If you answer Yes, then you are at fault for not doing/having done the deed. If you don’t want to do the deed, then you are a worthless [future] parent because you aren’t Doing The Right Thing.

If an embryo carries a genetic trait, then that means you were responsible by having the genes in the first place. If those genes are undesirable, then that can be described as the genetic equivalent to passing on the sins of the fathers to the sons. Screening embryos for hundreds of “bad” genes is essentially seeking to perfect and breed better humans. People are uncomfortable with the fact that we can’t “fix” everything with science or social engineering, and remove all traces of perceived imperfection.

The genetic screening scenario presumes upon knowing which traits are bad and which are good, and ignores the fact that genetic diversity is necessary within a population for it to be able to adapt to new situations. We need people with different skills to fulfill different roles, some of which may not yet exist. Furthermore, the “usefulness” of particular genes is not always evident; having two sickle-cell genes makes one anemic, but having one sickle-cell gene confers resistance to malaria. Useful traits can occur because of clusters of interacting genes, and identifying all the players in the interaction is difficult; you may need some genes (that could be individually problematic) but work in synchrony with other genes to create useful traits.

Screening out embryos assumes that autism is a bad trait, rather than a variation caused by combinations of genes. It also assumes that having autistic children is tragic because there is a social stigma to having a defective/ crippled/ retarded/ autistic child — the child will never grow up to have a job and marry, but will ever be a burden upon the parents and society in general. Those “afflicted” are therefore undesirable and not-quite-human; people who are different are unacceptable. The whole “quality of life” issue given as the rationale for such efforts is presented in tragic, worst-case scenario terms. It paints disability as a fate worse than death that must be avoided at all costs.

Such disabled or nonstandard individuals must be able to “prove” their [monetary] worthiness to society to be acceptable, and thus deserving of the same rights and privileges as others. To be acceptable, the deviant people must do their best to “pass for normal”. One must straighten kinky hair, pretend you don’t have a gay partner, walk with braces rather than use a wheelchair, wear “invisible” hearing aids, and for heaven’s sake, not flap your hands in public when you get excited about something. Those perceived norms or desirable qualities state a lot about the implicit social power structures: only the imaginary “normal” people are okay, even though in reality there is no perfectly average, normal person.

Much of the disability seen in autism is from the extrinsic, socially-created problems. In essence, people are saying that genetic screening is a good thing because those children would have poor-quality lives, but are ignoring that such attitudes are a large part of what create difficult lives for people who are disabled or different!

The tragedy is not in having a baby that is in some way different, but rather in the thinly veiled disdain / loathing / fear of the public that is projected onto the baby, and therefore reflects upon the mother’s moral, genetic and social worthiness. It’s her fault if she declines to avail herself of current genetics testing (for any number of anomalies) and bears a “defective” baby.

Should women be required to produce an acceptably standard “product”, a baby that will conform to prevailing social norms of desirability and perfection? It seemed like a good idea during the American and German eugenics movements in the early decades of the 20th century …

On Behavioural Observations and Assumptions

Traditional ways of understanding processes

Often science has taken the approach of understanding how things work by examining situations in which things don’t work, or in which they work differently, e.g. mutations in Drosophila flies or Arabidopsis plants, or disease processes. On one hand, these situations help reveal the mechanisms / processes by showing us where to look, and by giving us a comparison for what does or does not happen.

For example, when we have plants infested with insects, sometimes we see the insects (often we don’t see them because they hide on the undersides of the leaves; insects are not intelligent, but they aren’t stupid either), sometimes we see signs of the insects themselves (such as frass, a technical word for insect poop), and sometimes we observe or measure the symptoms caused by the insects’ feeding (such as red discoloration on sorghum from greenbug aphids).

When we have people infected with diseases, we can also see the outward signs or the symptoms reported by the patient, but we cannot see the disease itself. If the disease is caused by an organism, such as a bacterium, fungus, or virus, we can see the agent, but that is not the disease. The disease rather is the mal effect upon proper functioning caused by one organism upon another*. Diseases can also be autonomic, caused by something from within the organism itself; diseases in this sense are processes gone wrong.

Technically, something is a disease if it has a predictable set of symptoms, with some sense of the cause of those symptoms, and the physiology of how they are expressed. If the cause or the physiological dysfunction is unknown, it is not a disease, but a disorder. When repeated sets of symptoms are observed, they are referred to as a disorder. Although some disorders may be treated pharmaceutically, they are not diseases.

We cannot see the disease itself, rather, the disease is something inferred by the observations and dialogue between the people with and people without the disease. In contrast, a disorder is often only discerned by the people without such, because it is defined by comparison; order is defined by like, and disorder is defined by not-like. Diagnoses are defined by relationships and perception as much as, or even more so, the physical states.

Limitations of inference

When we have people who are autistic (et cetera), we diagnose it likewise by the “signs and symptoms” or the observable data of the behaviors. What we cannot necessarily determine are the causes of those behaviors. It is an accepted fact in some disciplines of science (such as ecology) that the specific process cannot necessarily be determined by the end results! We can hypothesize several likely causes, or series of causes that would produce the current situation, and we can do experiments to test if we get similar results, but those experiments do not guarantee that the specific causes and processes are what caused the current situation.

Quite frankly, our ability to understand what is going on is limited by both our ways of thinking, and by our abilities of perceiving the world. Ethologists who study animals are more often aware of their inabilities to share the same perceptions as their subjects than are behaviorists, because it is more obvious that the Umwelt (perceptual world) of a honeybee is different than that of a human being.

What we can discover is determined by how we approach the problem conceptually as much as by the methods we use, or by the data we gather (i.e., “If the only tool you have is a hammer, all of your problems look like nails.”)

A person who assumes that the behavior exhibited by another person results from a particular set of sensory inputs and mental processing, is therefore going to be limited in, and also sometimes erroneous in their understanding of that behavior. Five different people can do the same thing for five entirely different reasons. For one of them to assume that the others do the same thing for the same reason they do is a kind of egocentrism. In this way, the much-vaunted neurotypical “theory of mind” that allows people to guess others’ motivations by implicit information can actually lead them astray, because they assume that others do things for the same reasons they do.

Conversely, when people do not see the expected behavioral results from certain circumstances, they can sometimes misunderstand what is going on and why. If several people laugh at a television show and I do not, they may assume that I do not have a sense of humor. In truth, I have a well-developed sense of humor, and will spontaneously giggle at things I remember, or jokes I remember and re-tell to myself, or laugh from other television shows, but I do not always find the same things funny that others do. In this case, their conceptual limitations prevent them from understanding alternative causes.

Even if all the information is present to be observed, and even gets recorded through some miraculous accident of experimental design, the underlying causes and effects may still be hidden because the observer has neither the intent nor the capacity to notice and understand it. We can only answer the questions we ask, even if additional answers are there in front of us. Likewise, if we ask questions the wrong way, we will not be able to learn the right kind of information.

The current mode of research has derived from the pathology model, where we try to figure out what goes wrong. This is not bad. This is a necessary approach, in many ways. But it should not be the only approach. One of the best ways to figure out what we should do, and what does work, is to examine the successes!

Problem 1: warped perspective

It is because of the historical origin of psychology, (it stems from studies of mental problems) that the dominant paradigm is “average = normal”. Much of the diagnostic phrasing is focused on disorders, and it tends to pathologize what is different from the norm. If you don’t fit within the boundaries, then something is wrong with you, not that the situation doesn’t fit you.

On the other hand, these situations also tend to give us a warped perspective. The warping stems from the fact that identifying processes by “broken-ness” gives one a “Dysfunction” – and dysfunctional – view of the universe. Things working = function = normal. Things working otherwise = not working = dysfunctional = abnormal.

To follow the disease model is not correct because average is presumed to be equivalent to normal. Actually, “normal” is a value-laden word, because “normal” means both “average” and it means “okay”. Abnormal means not-average and not-okay. It is a false dichotomy to assume that not-average means abnormal!

There are those who deny the appropriateness of difference; one must do their best to fit it and not be different to be okay and accepted. I am different in many ways, many not visible. One difference is visible: I have fair skin and rather than tanning, will freckle and easily sunburn. This is genetic. Because of this genetic difference, I exhibit different behaviors than do most of my peers. For example, I do not use tanning beds or lay out on beach towels to sunbathe, and will do my field work clad in a brimmed hat, sunglasses, bandanna, long-sleeve shirt, cotton gloves with the fingertips trimmed off, long pants, and socks. The average person does not wear this much clothing when outdoors on a 104° F/40°C day; however, no one would say that I am “abnormal” for exhibiting these behaviors. These behaviors are appropriate and healthy for someone of my genetic makeup; they prevent me from stressing and harming myself. These behaviors do not create problems for others, and only create social disturbance because they are uncommon in some social realms. There are no, nor should there be, any negative value judgments attached to behaving differently than my peers because of this genetic difference.

I am also sensitive to noise, especially chaotic or high-frequency noises, and will in some situations wear ear-plugs, withdraw to a corner, or limit the frequency or duration of my visits to certain places. These behaviors are appropriate and healthy for me; they prevent me from stressing and getting severe headaches. In contrast, these behaviors are considered odd or unacceptable, but without them I can end up twitching, grimacing or swaying from the noise stress, and these reactions are considered even more unacceptable!

Then there are those who deny differences exist as real differences, and that if one cannot achieve things in the same way or at the same rate as “everyone else”, then they just are not trying hard enough or are stupid. People with AD/HD (et cetera) are simply “making excuses”.

“Everyone else” is an interesting myth of self-contradiction; it assumes that everyone is the same, while at the same time acknowledges the fact that one is not the same. The myth of “everyone else” makes the different person responsible for the having and resolving the problem that others create. The meta-issue here is that the person’s difference is not the problem – the others’ lack of acceptance is the problem! I do not “suffer” from any number of differences I have, I suffer from the lack of acceptance and understanding of those differences and how I can best function.

The unsavory alternative to people rejecting differences can be their amazement that people can accomplish things “despite” disabilities. Imagine during World War II, when in the US women went to work in factories. That women had competently done hard manual labor in factories in previous decades was often forgotten (the working poor or various ethnic groups didn’t count of course); instead there was amazement and collective self-applause because my goodness, women not only wanted to do factory work (how noble! how patriotic!), but could even do the factory work and do it well (how extraordinary). Those women workers who could perform well were an inspiration, they could overcome their lack of mechanical expertise, or inherent female weakness or even the fact that they suffered from monthly hysteria. Of course, after the war was over, the women were to cheerfully return to their kitchens and let men do the “real” work; factories wanted their normal, able workers. Of course, such attitudes seem dated and silly now; there is nothing amazing about women working, just people with “disabilities” getting college degrees or married or having families or working or …

Problem 2: assigned motivations

Another problem with the current model is that it tends to assign motivations that do not necessarily exist. For example, someone offers to share with me a slice of his or her home-baked, fragrant, pecan pie. If I smell the pie and love to eat pecan pie, I should [want to] eat the pie, shouldn’t I? But behavior is not merely stimulus-response; there is also the previous history of the organism, the perceptual realm, the mental processing, and the current state of the organism. For example, previous experience may lead me to drool when I smell pecan pie, but if I am not hungry then I will not have this reaction. If my nose is stuffy from a head cold and I can neither smell nor taste much, then I won’t have this reaction. If the offer of pecan pie comes with the additional requirement of staying and eating it at an intolerably noisy-busy lunchroom then I may also decline to choose to eat the pie. The person offering the pie may imagine a whole variety of motivations for my refusal of the pie, including suppositions about my judgment of their ability to cook good pies, or my desire to socialize with them. These motivations are imagined, and do not necessarily exist!

Problem 3: disemphasis

Although my differences affect what I do and how I do things, they do not exist separately from me, nor they responsible things, e.g., my ADHD is not “being bad today”. I may be judged “unsocial” when rather I am adverse to be in crowded, noisy places. This actually transfers my real or perceived motivations from my thoughts and my actions, and assigns them to the “unsocial dysfunction”.

The problem with this is that it changes the emphasis of thought from who I am and what I need to “what my problem is” and “what treatment my disorder requires”. Just as hospital patients run the risk of not only acquiring not only nosocomial infections, they also run the risk of being identified by or replaced by and treated as their maladies, e.g. “the COPD in room 243”.

Lacking diagnoses (and attendant “treatments”) for many years, I cannot say what my life would have been like had I been considered to be a child student with disabilities. I can say that missed diagnoses are just as bad as mis-diagnoses. I can also say that as an adult, the time I must spend getting diagnoses done, paperwork filed to “prove” such (it’s not real unless someone else says so on paper), making arrangements for “accommodations” (one must be very “special” to have enough time to finish a test, and to take it without a lot of distractions), having to go through the schedule re-arrangements required for such, and all the other stuff rather detracts from other things I could be doing, like studying or lab work. This really improves my ability to be a good student, right?

* If disease rather is the mal effect upon proper functioning caused by one organism upon another, could we then assert that some teachers/ clinicians/ social workers cause disease in autistics by interfering with their normal functioning?

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