The return of Rudolph

Because I’m up to my tuchis here getting ready to prepare the chicken tamales, baklava, mince tarts, potato latkes and whatnot, here’s a re-run of a holiday-oriented classic post (from 2006):

TODAY’S QUOTE:

“Nobody realizes that some people expend tremendous energy merely to be normal.”
~Albert Camus

There’s a newsclip kicking around the Web, from the CBS Evening News of February 23rd, 2006.  Normally I don’t pay attention to basketball.  Or baseball.  Or football.  Or hockeyball (joke).  This newsbite is different.  So different that CBS felt compelled to make a last-minute change in their programming plans to show this “incredibly powerful” story.

The newscaster explains, “Because he has been so devoted to the team, for the last game of the season, Coach Johnson actually decided to let Jason suit up – not to let him play necessarily, just to let him feel what it’s like to wear a jersey.”

And then near the end of the game the coach even lets him onto the court.  Finally getting to play in a game, rather than fetching water and toweling down sweaty team-mates, the basketball player made six three-point throws.  The crowd goes wild.

Gee, you’d think that a coach would want a player who could shoot like that to be on the court all the time …

View the newsclip now

The whole situation reminds me of how I felt every year when the “Rudolph the Red-Nosed Reindeer” animated Christmas show appeared on television. (links to show posted on YouTube; Rudolph introduced at 4:06.)  There was always something unsettling about the whole story of this reindeer with the glowing nose, and it wasn’t until late in my own high school years that I figured it out.

No one liked Rudolph because he was different.  In the beginning, his family tries to hide his nonconformity, covering up his nose with mud, but then Rudolph talks funny from the congestion.  Still, it is deemed better that Rudolph be perceived as talking funny, than for everyone to actually know the truth.  Eventually the disguise breaks down, and Rudolph’s glaring, glowing nose is revealed in the rough-and-tumble of playground mischief.  Everyone is horrified.  They always are when someone tries to “pass for normal” and is eventually outed.  People feel deceived, because the Other was not what they thought.

The reindeer games coach orders Rudolph away. So shunned, he leaves his North Pole village, joining up with another misfit, Herbie the elf, who wanted to be, oh horror, a dentist rather than a toy-maker.

A few years later there is a Christmas eve of such epically foggy proportions that Santa Claus cannot make his usual gift-giving rounds.  Santa realizes that he can still do so if Rudolph is allowed to lead.  Eventually everyone decides to tolerate the mutant reindeer, perhaps accept Rudolph a little bit, but only because he can be useful to them, lighting the way for Santa’s sleigh.  (Herbie gets to be a dentist, another occupation that is tolerable because it is useful to the others, rather than because Herbie has a passion for dental care.)

The program was made in the early 1960’s, coming off of the ultra-conformism of the 1950’s.  Everyone thought it was cute and sweet.  I couldn’t explain the intrinsic discomfort I felt as a child, not from viewing that particular show, or even in everyday life.  Nor could I explain why I identified so strongly with Rudolph or for that matter, the alien Spock from “Star Trek”.  When the neighbor girls compared me to the Professor from “Gilligan’s Island”, I couldn’t understand why that wouldn’t be a compliment – he was the only sensible one of the castaways!  But even the Professor, a quintessent geek (though thankfully neither of the foolish nor ugly duckling sort), was the odd one out.

The telethon poster child or “odd team-mate” is held up in the same way, but also held away at arm’s length, and Othered.  We’ll let him be on the team in an accessory manner because it makes us feel munificent, and because he might be exceptionally good at something we need.  (Were he merely mediocre, or even near or at the bottom of the list for overall skills, would he be on the team?)

But the mere fact that a team-mate is known more for being different than for any aptitude or acquired skill, and even the fact that stories about such people are circulated as ABSOLUTELY AMAZING! and exceptional shows that pity is still stronger than acceptance.

The problem with pity is that it creates division; it puts distance between people.

Pity prevents respect by implying inferiority; there is a humiliating lack of worth, because the person is defined by what they cannot do instead of what they can do.  Victims receive pity – but nobody wants to be a victim!

Pity is disempowering.  It does not decrease burdens by sharing resources and abilities. The people who see only the “broken” part are uncomfortable; that discomfort is a kind of Schadenfreude, a sense of relief that the bad thing (the disability) did not happen to you.

Pity is like magical thinking, where people want to give Fate some kind of token payment to avoid similar disaster from befalling them.

Pity is similar to both fear of the other, and to contempt for the Other; the Other must somehow have done something bad, and “deserved” their fate (as given to our social mores from the Puritan ethos).  Either way, it is dismissive of the person’s concerns, and denies their opinions, and their own personal view of reality.

Pity is not the same thing as compassion, where the other person is seen as being similar to one’s self, and is identified by who they are, is known for what they can do, and is accepted as being a worthwhile person to play with or work with, and to know and to love.

“Because he has been so devoted to the team, for the last game of the season, Coach Johnson actually decided to let Jason suit up – not to let him play necessarily, just to let him feel what it’s like to wear a jersey,” says the newscaster.

::BARF::

Meanwhile, too many people work endlessly hard at trying to “pass for normal”. The problem with pretending to be normal is that it gives power to the paradigm, to this concept of normalcy.  As long as the person is pretending to be whatever kind of average-normal they are not, they are devaluing themselves and allowing others to devalue them, and they are handing over their personal power to the realm of the imaginary Normal people.

Normal, average people are imaginary, because no-one is wholly average and normal.  However, the imaginary-normal people are a very real majority group.  They all pretend to be normal, and en masse they have majority power under that paradigm.

Wow, isn’t it absolutely amazing!  Autistics can play basketball.  Next thing you know, they’ll let Negroes or women play basketball …

Feh.

Getting permission

The last time I taught one of my gardening classes, I ran into an interesting intersection of personal change, horticulture, and pedagogy.

At the end of the sessions, the students have (optional) evaluation forms to fill out about the class and instructor. On the front is a ranking various qualities of the facility, the topic, the instructor and so on, and the back has open-ended questions about what you liked best, suggestions for improvement, other courses and what-not. These review forms are very helpful to both myself and the college.

During the last class, under the “what you liked best” section, I got a comment that I’ve never had in 15 years. Usually the positive remarks are about the handouts, the photographs, my sense of humor, and willingness to answer questions. But today one of the evaluations had minimal responses, aside from this comment: Read the rest of this entry »

I Will (not) Overcome

I’m not dissing a great protest song. I am however, getting really tired of the whole “overcoming one’s disability” cliché. For someone who does spend a lot of effort dealing with issues, that may sound odd. Why don’t I want to “overcome” my problems?

To overcome one’s disability does not just means to succeed in doing things in life that are personally difficult. It also carries the social and verbal subcontexts that one has not only succeeded, but also Read the rest of this entry »

Box? What box?

When I first read this job advert, I began to weep. I didn’t know anyone else understood what it was like to be this sort of person – to have this kind of mind – much less that anyone out there valued it.

Miscellaneous Vacancies

Are you:
• A creative, articulate scientist with research experience in biological, medical, chemical, electrical, mechanical or materials engineering disciplines?
• A lateral thinker, passionate about science and your own discipline, yet able to think outside of the box and make connections to other fields?
• A great listener with highly developed interpersonal skills, with career goals in commercialisation, technology transfer or business development and able to manage relationships with clients in a highly fluid environment, respect confidentiality and work with people across all levels of an organisation?

Do you:
• Thrive on change and derive great pleasure from making connections between seemingly unrelated ideas?
• Get a buzz from finding new routes that others have not trodden before and yet would be comfortable with working collaboratively to develop your ideas and those of others without expectation of extra personal or monetary recognition?

Sadly, the closing date for the position had long since passed by the time I read it. But like so many dangerous ideas, knowing that such a thing even existed reverberated up and down my mental timelines.

In graduate school, the entomology professors didn’t understand how or why I kept making connections between ecology and learning disabilities. Such details were certainly not necessary to researching insect behaviour, no matter how much they might apply to some of the students in the department.

In a recent New York Times article, “Innovative Minds Don’t Think Alike”, Janet Rae-Dupree describes the “so-called curse of knowledge” where experts are so familiar with traditional means of getting things done that their expertise gets in the way of innovation. The article also describes how bringing in people who have other fields of knowledge, but who are not bogged down by the specialist jargon that reinforces and limits the current understanding, can free up boxed-in thinking and create new ideas.

It’s a conundrum how organisations (academic or otherwise) claim to want innovation, but are resistant to novel suggestions that often go against what everyone knows will work. But as the saying goes, “If you always do what you’ve always done, you’ll always get what you always got.”

More recently, an education professor was not only unfazed by my entomological background, but thought it “wonderful” and mentioned that Jean Piaget had worked on snail behaviour before working with children. I was flabbergasted. I so rarely get such unexpected, sincere kudos that such a moment can keep my spirits buoyed for weeks.

“Thinking outside the box” has always been easy – rather, it’s trying to figure out just what the hell others perceive as The Box that’s hard. I’ve spent decades struggling to understand what people’s boxes are like, how they construct and use them, where the boxes came from, and when I am supposed to intuit and conform to those boxes.

Unfortunately, because of everyone’s jargon-constrained knowledge boxes, it’s hard to describe my own kind of lateral, inter-disciplinary thinking. Trying to convince others that they can benefit from such seems almost beyond my abilities, as I’m not a natural salesperson who can schmooze and easily persuade others.

Meanwhile, I’m still buzzing about, looking for a good niche. At least now I have a few more um, “buzz-words” that will help me describe what I can offer.

Rudolph Redux

I’m trying to paint a small bedroom (doing so slowly, over the course of the day), which means no time for blogging.  But it’s also that time of year when the “Rudolph the Red-Nosed Reindeer” animated Christmas show appears on television.  There was always something unsettling about the whole story of this reindeer with the glowing nose, and it wasn’t until late in my own high school years that I figured it out.  Here’s a link to my post from last year, “Games People Play (off and on the court)“.

Some things never change.  ::sigh::

Liberation by Disability: the paradox of Competency and Inclusion

“Because there is no way for good people to admit just how bloody uncomfortable they are with us, they distance themselves from their fears by devising new ways to erase us from the human landscape, all the while deluding themselves that it is for our benefit.”
~Cheryl Marie Wade

Disability is usually defined by what a person cannot do. But outside of the normative social realm, disability is really about how a person does things differently.

Within the cultural status quo, the onus of being “acceptable” for consideration to being included by others, is placed upon the person in question, rather than by those who are creating the standards and are choosing to accept or not. Frequently, inclusion must be “earned” by first Read the rest of this entry »

Wicked Good

This is SO cool! The Disability Rights Commission put together a video (split into Parts 1 & 2). The official description for Talk:

The award-winning ‘Talk’ portrays a society in which non-disabled people are a pitied minority and disabled people lead full and active lives. Jonathan Kerrigan, of BBC’s ‘Casualty’ fame, plays a business executive whose negative preconceptions of disability are dramatically shattered.

“Coffee-spew warning”: their official description doesn’t begin to describe the wicked-good bits; they’re absolutely spot-on with digs at disablism!

This particular version is both subtitled (open-captioned) and signed. I think that’s signed in BSL; someone kindly let me know. Be sure to scroll downpage for the Part 2.

 

Asking questions

Well, it’s horribly hot outside, which means that the classrooms are either quite stuffy and humid-sticky, or due to HVAC design errors, uncomfortably cold for 95% of the personnel using them. The faculty, staff and students are all yawning from screwed-up sleep schedules, and from being bombarded with mind-numbing amounts of new information, masses of new people to become acquainted with, and multiple changes in their schedules. In other words, it’s once again the first days of school.

Once we get past the obligatory, “Here’s what we’re gonna learn, and here’s the class rules” lecture, we get to finally sink into the actual teaching-learning part of the class. Alas, there is a definite sinking feeling in the classrooms, as for the first few periods of the day many of the students are still half-asleep (a few gave up and have totally succumbed), are often suffering from low blood-sugar levels because they skipped breakfast, and/or just generally cannot rouse enthusiasm for studying biology, algebra, government or whatever subject was given to them for 7:40 a.m. (Omigod, these are teenagers — if pedagogy actually followed research-based practice, none of them would have class until 10 a.m. when they would physiologically be ready to be awake. But of course, that would –godforbid– mess up the sports practices.)

So the teachers are desperately trying to keep their charges engaged by encouraging dialog. You say, “Let me know if you have any questions.” Judging by the general lack of responses regarding the lecture topic, the blank stares, and the mass confusion when given labwork and projects, the students should be asking questions. Or, should be asking more appropriate questions.

But actually, this issue is not the proximate question of, Read the rest of this entry »

What I Learned From the Bugs: Alienation and Othering

“Great truths are sometimes so enveloping and exist in such plain view as to be invisible.” ~Edward O. Wilson

I went to study Entomology, and four years later found that I had discovered far more about my own species than I had about insects and other arthropods. What I learned about humans was enlightening, and often very disquieting.

Frequently, if you can’t see something, it’s because it seems normal and appropriate. Alienating and Othering so permeates the many facets of culture as to be invisible.

Take for example writings about people, either individuals or groups. These can be works of fiction, clinical accounts, self-help or parenting or therapy books, historical or sociological analyses, in fact, any sort of book whatsoever that refers to people with differences. (I was going to say “differences from the norm” but we also find this in books about women, and surely half the population has to be considered a “norm” from a sociological if not a statistical perspective.)

Frequently such accounts use the omniscient writing perspective, which makes it very easy to Read the rest of this entry »

The Privilege of Being Clouted By Cabbage

Yesterday I went to the grocery store.

I wandered up and down the aisles, repeating a few aisles in my (typically ADHD-forgetful) journey to fetch the items on my list (and I still forgot a couple of items, despite using a list). I selected various pieces of produce and only had one head of cabbage leap from its cruciferous ziggurat to hurl itself at my feet. (I was examining a pineapple at the time – what is it with kamikaze produce?) I paid for my groceries, uneasily navigating volleys of largely meaningless chit-chat from an exuberantly loquacious checker. I loaded the bags of groceries into my vehicle, and drove home. Aren’t you thrilled.

Doing all that was possible because I am privileged to do so.

Privilege means Read the rest of this entry »

“Cyborg Cool” Versus “Crip Pity”

Observing human society is a never-ending fascination, because people are always doing the weirdest stuff. Social memes are maintained because people accept, use, pass along, and perpetuate attitudes and the behavioural responses that go with those attitudes. Sometimes those behaviourally-expressed attitudes are maintained simply by the very powerful force of social inertia – they exist because no one pauses to say they shouldn’t exist.

Sometimes no one pauses because the collective cognitive dissonance isn’t being noticed.

Here’s one that has been entertaining my whimsy / befuddlement / concern for a while now:

Bluetooth Earphone = Cool VS Hearing Aid = Pitiable Old Fogey

If you’re not familiar with the item by name, Read the rest of this entry »

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

Running With the Red Queen

Everyone in life has to compensate in some manner or another, because no one excels at everything. If you are not mechanically inclined, you take your car to a shop to get the oil changed, and you call a plumber to fix leaks or replace worn faucets. If you’re not comfortable with arithmetic calculations, you have a tax specialist do your annual return, and you arrange for automatic payroll deposits and bill payments with your bank. These are ways that ordinary people deal with ordinary difficulties, and no one thinks any less of them. In fact, the economy depends upon people’s interdependency — earning your living doing things for others is important to the Gross National Product, is important to a town’s sense of community, and is important to a person’s self-worth from feeling useful.

It is curious that people who have others do everyday things for them because they are rich are envied, whereas people who have others do everyday things for them because they are unable to do them are looked down upon. People with ability sets that are different than the “average” person’s run into problems because they are being “inappropriately incompetent”. Some of those “should be able to” things are related to sex-rôle stereotypes: a man should be able to fix a leaky faucet, a woman should be able to sew her own shirts. Among more traditional or conservative populations, a person is not faulted if they are incompetent at a skill that is reserved for the other gender. However, when someone cannot do something that is expected of everyone, or cannot do it well, or cannot do it consistently, they are then open to derision.

The Austrian psychologist Alfred Adler noted how people compensated and even over-compensated as ways of dealing with perceived incompetence and avoiding feelings of inferiority. Not all “incompetences” really are gross difficulties — they may merely be assigned as such by others around us.

I’ve mentioned before that my life is a mass of compensatory strategies. I compensate for auditory processing problems, and the tinnitus that increases the background noise problem. I compensate for prosopagnosia (difficulties recognising people from their faces). I compensate for all those organisational, time-sense, and executive-functioning issues related to ADHD and Asperger’s (planning, executing tasks including the getting-past-the-inertia stages, self-monitoring). I compensate for the hyperacusis, and my general clumsiness, tics and stuttering, and migraines. Generally speaking I compensate fairly well. So much so that most people don’t realise that I am working much harder to achieve nearly as well. I “pass for normal” most days, so people can’t understand why I’m having problems when I’m ill or stressed or simply trying to compensate for too many things simultaneously.

Adler would probably say that I over-compensate.

I had to go through Driver’s Education class twice to acquire the necessary motor skills. I did eventually learn to drive stick shift (manual transmission) and have even driven in both the UK and US. The day that I parallel-parked in front of my high school to request a transcript to be sent to a college was indeed a threshold moment in my life. (Even the transcript part was a highlight, as assaying higher education was uncertain due to my previous academic difficulties.) My husband once asked me, “What, can’t you drive and talk at the same time?” and I did not feel that it was unreasonable to answer, “No, I can’t.” I cannot drive a stick shift vehicle through city traffic, trying to find a business I had never been to, and talk on a cell phone. (I have Auditory Processing Disorder and he has a severe hearing loss — talking on the phone can be inherently confusing in its own right.)

There are classes when I struggle to keep my attention focused on the instructor, and also to understand what they are saying, especially if the classroom is mechanically noisy, or if the instructor mumbles or talks while facing the whiteboard or doesn’t present information in a clearly-defined format or use supplementary visuals. Because I am very good at being able to distinguish the important material in an educational presentation and record those details in sensible paragraphs, I have been a note-taker for dysgraphic or hearing-impaired students. But I have only been able to do that in those subjects where I was already familiar with most of the information — I could not be a note-taker for others if I was still learning all the vocabulary and concepts myself.

Mathematics presents special difficulties for me because of problems with sequencing, slow working speed, and occasional transpositions. It took me four years to memorise my multiplication tables, and I have flunked a number of tests over the years, and nearly had to take a class over. In university I dropped a course that I was getting D or F grades, to try it again later on to get C, B or A grades, and did that with more than one course. It was slow, difficult work slogging through college algebra, trigonometry, calculus, statistics, physics, and four semesters of chemistry. One of my current jobs is working as a special education paraprofessional. I help in the science classroom, but my main assignment is in the math classroom. The extremely ironic thing is that not only am I helping students with mathematics, but also that I am doing so in the very same school I attended years ago, in the same classrooms where I had once sat flunking math tests. (My first work week was not only difficult from the prosopagnosia-aggravated new-job disorientation, but also from “post-traumatic school disorder” as I had ongoing flashbacks.)

I actually did flunk a semester of secondary English and had to re-take that portion of the course. I have also written a book and hundreds of articles (on a variety of subjects) for magazines and newspapers. I tutor college students in composition classes.

Given these examples, it might sound as though my difficulties were all in the past, and have been made up for by my recent successes. That isn’t quite true. What I have done is learned how to work around some kinds of difficulties. With others I simply have to work harder to puzzle through consciously to figure out those things that most people do easily and without conscious effort. Some days I feel like Alice Through the Looking Glass, running as fast as I can just to stay in place.

The problem with over-compensation is that although I have at times felt that I had vanquished my personal demons of incompetence by having overcome various failures with landmark achievements, those successes do not mean that I cannot or will not have future problems! What helped more than those moments of personal glory (exhilarating though they were, despite lacking exciting soundtrack music), has been finding out why I have problems, how those problems manifest in my daily life, and how to work with them. Self-understanding improves self-image because it gives me tools for those ongoing and future difficulties. Self-understanding means that the next time I fail something (not “if” but “when”, because everyone does fail periodically), I will have the necessary cognitive and emotional tools to handle the disappointment. I will be able to handle defeat graciously, because it is a failure of task-specific achievement, not moral failure. Furthermore, I can extend that same grace to others, because we all have such problems, even though the details differ.

Out in our various communities, we need to be able to not only acknowledge that Yes, not everyone can do the same thing, but also destigmatise that fact. One of the tragedies with the current paradigms in the helping professions is the disdain and depersonalisation from “care-givers” to that people who need personal attendant services or other forms of assistance. We can’t all do the same things. Needing someone to change your diaper should be no more stigmatising than needing someone to change the oil in your car. There’s really something sick about people who feel superior those whom they serve — there’s an element of self-loathing transferred from one’s self to one’s job to the client. It is overcompensation of the soul-eating malicious sort. Service to others is about sharing strengths, not about bolstering one’s damaged self-worth at the expense of others’.

We should not have to overwork ourselves to over-compensate just to earn other’s acceptance.

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.

Our Hidden Power

Much of the pain we find in situations is what we bring from our own suffering, and we keep re-projecting that suffering into the situations. We carry with us the compilations of confusions like luggage, and masses of delusion like garb that fill the luggage. These weigh us down and weary us. Yet we are convinced that we must have some luggage, and that the luggage we have is supposed to be good luggage, or luggage that we are supposed to improve or trade for better luggage. We feel “eternally cheated” because we aren’t carrying the kind of luggage that we thought we wanted, or that were told was the best kind of luggage. But the luggage and everything in it is the actual problem, not the kind of confusion-suitcases we have, nor the kind of delusion-garb in the suitcases.

The reason we are dragging all this luggage is because it is meant to distract from our own power. Surprisingly, because autistics and other people who are atypical already work outside the social paradigms, they have a certain access to power. It is for this that there is so much fear of the differences – the ability to see the artificiality of the social norms and to work outside of the normalizing influences. But as long as we are unaware of this, we will be stuck where we are.

~//~

“When I dare to be powerful – to use my strength in the service of my vision, then it becomes less and less important, whether I am afraid.”
~ Audre Lorde

“Power” has many meanings. I consider power to be ability, strength, and creativity. Power as ability allows you to do things to take care of your needs (or the needs of those whom you are responsible for, such as children). Power is also strength, not in the sense of force, but as potential and endurance. The potential comes from the ability to avoid being “for” or “against” existing ideas (and expending great energy either way), but from simply stepping outside them and transforming energy. Companion to (but not opposite to) strength is gentleness, an acceptance of energy. Creativity is the experience of personal power when forming or transforming new understandings/ visions/ feelings, and often shaping those into a transmissible or translatable form to share and change others’ experiences. Personal power comes from the eternal change of the person. Like love, power is inexhaustible. Power can be shared, rather than just given/taken.

Power is an understanding that every organism must by necessity, be self-centered and care for itself, without the assignment of value judgements that self-care is “selfishness”. One must self-care before being able to care for others, literally or in the positive emotional sense. “Poverty” results from powerlessness, when you (for whatever reason) do not have the options in life that allow you to meet your needs.

Popular conceptions of power (such as one finds in dictionaries or history stories) include an authority (in the sense of both the judging-deciding and the expert-wisdom source), that is able to control-command what others do, and is able to control-command what others can have, by influence and/or force. Power is often considered to be a “right”, meaning the accepted covenant that gives collective individuals powers to a person or position. The word “right” in itself has a messy complexitude of meanings, including privilege, propriety, and correctness.

You can see there is an essential difference here. The popular conception of power usually include assumptions about top-down regulation as an inherent, unavoidable, required and necessary form of power, with the assumptions about the inevitability of that process, the necessity of power-by-a-few, and the inherent correctness of that situation. Power is seen as an inevitable form of giving and taking, with inherent weakness on the part of the individuals. It assumes that there is a scarcity of power, and that everyone selfishly competes for power. Political systems are officially designed to structure those interactions, and implicitly to maintain a status quo of the power paradigms. Government and education (and education about what government “is”) are not the only sources of power regulation; there are also strong nets of inter-related cultural memes that actively work to enforce the status quo.

This concept of power seeks to prevent change; it wants things to “be” a certain way, and thus like a bridge trestle in the middle of a river, is always working against the flow. It takes great energy to work at resisting change, and that energy is drawn from the multitudes of individuals. They must be convinced to give away part of their own power to this futile effort.

Within that conceptual framework, personal power is seen as personal ability (usually requiring competency that is assigned by authority) and strength (force of will or body – an ability to resist something). Personal power is rarely understood as ability from the ease of self-authority, strength from potential and endurance, and the experiential transformation of creation. Therefore, most people are quite unaware of the powers that they naturally have. Many of the power paradigms work to maintain that lack of awareness, by limiting people’s understandings of how power works, and by meting out the “punishment of reward” to those who are willing to (or unwittingly) perpetuate more of the same system.

Power can only be given, not taken. Many people do not realize that they have any inherent power or that they can create power. Instead, they are taught to think rather that power is given to them. (Two-year old children are an exception; because they are still in the process of being “socialized”, they are fully aware of their own power when they demonstrate that well-known response, “NO!”)

The transfer or giving up of power requires that one accepts or believes that others’ purposes/ goals/ methods are more important that one’s own. Doing this diminishes and defers one’s own needs (our needs are “selfish”), and also devalues or denies one’s own sense of wisdom that is one’s perceptual forms and understandings of the world. Institutions of many sorts teach these assumptions to guarantee their own persistence.

When we ignore these givens, we become agents in the system that are untouched by the cultural covenants. When we express our abilities that rise from ease of self-authority, we create puddles of null-effect in the power paradigms. The “aberrant” individuals fail to comply by deferring their time and efforts to “selfish” works, instead giving their energy to others.

Focus is a power, and one that is rarely considered as such. Focus is the ability to maintain the strength of one’s drive. Part of the power of strength is endurance, the ability to follow the unique concepts by perseverating upon them. Many autistics naturally do this, and a system that seeks to Normalise everything is therefore threatened. This is because focus creates “hot spots” of power in a system that seeks homeostasis by minimising the power apportionment to individuals.

Disregard for Normalising influences (e.g., peer pressure) is a power. The power game only works if we play it; ‘nuf said. Those who recognize their personal power ignore the requirements for requesting recognition of expertise. They follow their own strengths and wisdom. Indeed, what else can a person really do? How one perceives and understands the world is unique.

The person whose perceptions and interactions with the world are skewed from the norm will never be able to completely fit within the accepted parameters. We have seen that trying to fit into some of those required perceptions repeatedly ends in failures, and censure. Trying instead to assert our different perceptions can result in others’ denial that things could possibly that way, or results in others’ assertions that these things are done “wrong”. Being expected to “know” what is correct and then demonstrating that in social interactions, without necessarily having the ability to discern those messages or those rules is the illogical “catch-22” that makes us insane or depressed.

Wisdom is impossible to gain if so much energy is expended trying to reconcile what we know intuitively to be true from our perceptions of the world, with what others (stuck in their dichotomous view of the universe) insist is the only correct understanding. Instead, we regain personal power when we can realize that we need neither accept nor deny these social constructs, but rather to ignore them and instead work with our personal strengths. Strength creates potential, the ability to not be constrained by customary thought.

This is not to say that we cannot suffer consequences from refusal to play the social games. This is due to the fact that a variety of people will be made very uncomfortable by those who “ought” to know what the rules are, but don’t follow them. They try to “fix” those who disregard this paradigm, for a variety of reasons. A variety of reasons are assigned to all this fixing: helpful, caring, altruistic, or corrective (sometimes punitively so). But frequently those care-giving reasons are nothing more than covert expressions of the need to maintain the power paradigm.

Bullies do not work within the power system(s), but with it; they recognize how it really works, and how manipulate it to their own ends. Those who are outside the power system but do not realize it, are then targets for bullies because the bullies can often make the rules selectively work for them. Those who are outside the power system and DO realize it confuse the hell out of bullies, sometimes resulting in the antagonistic fear-from-ignorance reaction. The problem of course is that many autistics are in the former, rather than the latter group.

~//~

Once we quit dragging around this luggage and everything in it, we can finally stand aright and see the joy that is the real world. But when we’re dragging luggage, all we can see is a world that is an endless luggage-carousel of pain.

We have neither succeeded because of the system, nor despite it. When we have succeeded, it is because we have found ways by learning paths that worked for each of us. How can we help others until we can find our own healing? This is not a problem, but an opportunity.

Our strengths are our assets.
Used properly, our weaknesses are our assets as well.

Too many people assume that to have any power, they have to have the ability to force others to do what they want to do. This is a grossly distorted vision, and one that is perpetuated by the system that relies on keeping people ignorant about their own generative and coöperative powers by convincing them that force is the only system.

In truth, divisiveness and scarcity and differences are artificial constructs meant to confuse the issues. People who continue to believe in such are letting themselves be kept “in their place”. It is when we realise our abilities and commonalities, and can show others that they share those as well, that we are able to do what we need to do to help each other.

“If you think you are too small to be effective, you have never been in bed with a mosquito.” ~Betty Reese

“Who the hell are you to complain?”

While washing dishes I started off thinking about the things I was thankful for (the usual census: family, health, good weather, employment and so on), and then by the drying stage my thoughts had wandered off (as they are wont to do), and I realised that I had some things that were more on the Relief side of the bookkeeping, such as “I’m so relieved that my life isn’t full of bitter, angry, crazy-making people.” That wasn’t a very cheerful sort of relief, because it meant that my life used to be. There is also a sort of spiritual weariness that comes from being thankful for the bad things that aren’t happening to you.

Trying to figure out, “How does one get into those kinds of situations?” isn’t hard, because unfortunately, the world is chock-full of them. The blogoshere is rife with weary stories about people’s struggles. But later on while soaking in the philosophical font that is the bathtub, I realised once again that so many of these struggles revolve around the same faulty premises.

There is a pervasive myth of scarcity in our society. I’m not talking about physical resources, even though some of those truly are physically scarce, and many are actually badly shared. Rather, I’m talking about the myth of social scarcity. The fabric of the story line has these warp threads running through it, and given how obnoxious they are, we might call them Warped Threads:

There’s not enough caring to go around — if you get what you need, then I can’t get what I need.

Everyone is being judged, and if I can “prove” that my problems are “worse” than yours, then I win and will get the caring I need, and you lose and won’t get it.

If I don’t get the caring I need, then I can’t be held responsible for being upset, and acting out my frustrations by punishing others.

If I feel slighted because others won the contest, then I’m justified in doing what I feel I “have to” to get substitute needs met.

These lines are getting very childish sounding, aren’t they? And yet they form the foundation to a tremendous amount of infighting for resources or services, and blaming others for creating problems so they can be charged for restitution, and excusing abusive or murderous actions against innocent people.

Wow. There is in fact a deep level of social immaturity, selfishness, lack of empathy and pettiness to the whole scenario. I would call this a cultural immaturity, but it is hardly limited to one culture.

Indeed, these scenarios are widespread and are seen in every bureaucratic, legal, scholastic, and economic system. At these broad levels of pervasiveness, we don’t even notice the underlying errors so that they seem to be the natural order of things.

Underlying all of them is the wholly artificial concept of scarcity: There’s not enough to go around — it’s you or me.

This perceived scarcity even extends to assisting others. A strange virtue is sometimes seen in “guarding” the services-as-scarce-resources from people who would use them.

You’re not fit to judge what services you need, or whether or not you need the services.

We can’t give you these services because other people need them.

You’re not the worst off, so you don’t need them badly enough to get them.

You’re so badly off that you wouldn’t be able to really make good use of them, so they would be wasted on you.

You’re just being greedy, going around asking for services.

If you’re not failing, you’re obviously getting by okay.

Anyone who fails like that is just being lazy or noncompliant. We’re not giving you any services until we can see you putting forth enough effort.

(Bang head here.)

But it doesn’t do any good to whine and complain about how “unfair” things are, and how you “deserve” better. I’m not saying that you don’t deserve better, but rather that we all deserve better. The sad fact is that the people who are doing these things also deserve better. They perpetuate the problem because they don’t recognise the causes of it, and because they lack the tools to build something else.

Most importantly, we don’t want to punish people for having problems. This screwed-up social paradigm is certainly a great problem that besets us all. Instead of antagonism, we need to help each other. We need to quit staking out lines between Us and Them. We need to help by teaching each other how we can help each other. After all, the reason that humans are social animals is because we can work together to create solutions for problems that we cannot solve as individuals. We are all dependent upon each other for a multitude of things.

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.

“The master’s tools will never dismantle the master’s house. They may allow us temporarily to beat him at his own game, but they will never allow us to bring about genuine change.” ~ Audre Lorde

Uncommon Parallels: Gossiping And Stimming

In an article from the Social Issues Research Centre (out of Oxford), Kate Fox describes in her article, “Evolution, Alienation and Gossip” the functional rôle of mobile phones for promoting community by aiding gossiping. Apparently my text messages are rather humdrum and atypical, as they relate mostly to grocery expeditions, dinner attendance, and doctor appointments rather than gossip.

However, a particular paragraph caught my eye:

“Gossip is the human equivalent of ‘social grooming’ among primates, which has been shown to stimulate production of endorphins, relieving stress and boosting the immune system. Two-thirds of all human conversation is gossip, because this ‘vocal grooming’ is essential to our social, psychological and physical well-being.”

Grooming-talking (“phatic communion” for the psycholinguistics word buffs out there) is the verbal equivalent of grooming other apes.

Perhaps stimming fulfills many of the same functions, to “stimulate production of endorphins, relieving stress and boosting the immune system”?

I realise the comparison sounds really odd. Instead of being a social kind of functioning, it is a typically autistic kind of functioning. I mean, gossiping is a social activity of the highest sort. Rather than communicating in the sense of exchanging necessary data, it is passing along information as a means to promote peace and solidarity between people in the same “tribe”.

In contrast, stimming is an emblem attribute, the very archetypical sign of the autistic. It is pretty much a self-involved activity; one might stim upon something they’re seeing or hearing, but it’s not a social interaction per se.

Of course, nearly all people gossip to some extent, and nearly all people stim in some manner or another. People are people, whether autistic or neurotypical, and it would be erroneous to assert otherwise.

Nor am I asserting that gossiping and stimming are dichotomous states. Rather, that they are two activities that despite being other- or inner-directed, fulfill much the same psychosomatic benefits.

What is also interesting is that both gossiping and stimming are activities with negative connotations assigned to them. Fox brushes away some stereotypes by asserting that men gossip as much as women, about much the same subjects, and as often as women do (albeit more often with work colleagues). It’s not that men don’t gossip, but rather that they don’t like to own up to it because it seems trivial.

Fox says, “Whatever its moral status, there is certainly some evidence to suggest that gossip is a deep-seated human instinct … This would indicate that gossip, far from being a trivial pastime, actually performs a vital and socially therapeutic function.”

Stereotypical stimming activities like hand-flapping, rocking or finger-flicking have historically been actively discouraged and “trained out” because people don’t want to own up to the fact that they are or someone else is autistic. I am willing to bet that a lot of stimming actually still goes on under private cover, or has been translated into more socially-acceptable fidgets. It is too essential to the human condition to do what one can to reduce stress, one way or another. As a cautionary note, when people cannot use benign ways of dealing with stresses, they will sometimes end up using other stress-releasers that can sometimes be ultimately addictive or self-destructive.

In would be very interesting to run physiological testing to measure some of the state changes in stress levels that occur before, during and after someone engages in a bout of stimming. If we find that these activities do indeed aid people in reducing stress, we may then have further proof that attempting to stop or limit these behaviours is literally harmful to autistics (and others).

Just as people with Tourette’s should be able to function in everyday life without having to spend great amounts of energy trying to suppress their tics in order to pass for normal, autistics should likewise be able to function in everyday life without having to spend great amounts of energy trying to suppress their stims. (Of course, I’m not purporting that highly disruptive tics are going to be acceptable everywhere, nor that injurious stims are a good thing. Such blanket, extreme statements are merely strawman arguments.) As long as the tics or the stims are not going beyond someone else’s personal boundaries, then they ought to be considered acceptable.

Common, polite society needs to realise that not everyone moves, talks, interacts or waits in the same standardised manner. Spending enormous efforts to pretend that one is the same as everyone else does nothing to advocate for diversity and does nothing for one’s health. Disabilities and physical differences are a normal part of life, and so are neurological differences.

IFs, ANDs or BUTs

When dealing with exceptional students, it’s all too easy to end up just focusing on their difficulties, to the exclusion of their strengths.  Sometimes even the strengths become seen as weaknesses (which is a whole ‘nother story – stay tuned).

You get statements like, “He’s a good writer, but he has major problems with spelling.”  That word but seems to overwhelm all the student’s compositional abilities.  It mentally halts the flow of positive qualities and of plans, not unlike when we say, “We were going on a weekend trip BUT I got sick.” “She could move up to pre-algebra BUT she doesn’t know how to do fractions.”

Sometimes the difficulties are problems that impede progress.  One needs to know how to handle fractions in order to work with algebraic processes.  In situations like that, “but” is an appropriate term.

On the other hand, we tend to become so overly focused upon problems that we end up using “but” way too often.  Thus, we inadvertently limit our understanding, we limit our plans for future work, we limit what we provide for the student in the way of accommodations or services, and ultimately we limit what we and the student expect that they can achieve.  In other words, it becomes something of a self-fulfilling prophecy, a perceived limitation that becomes a semi-real one.

Try this on for size:  “He’s a good writer and he has major problems with spelling.”  By substituting an “and” for the “but”, we now have a student who remains a good writer, and also needs some kind of assistance with the spelling issue.  When we say “and” we do not lose sight of the problem, but we do not as easily run into the issue of false limitations.

“If” can also be a strong word.  That sounds strange, doesn’t it?  The most wishy-washy, uncertain, provisional word can actually be a strong thing.  It’s preconditional, meaning that something can be accomplished when something else is arranged first.  Millions of programmers know this to be true; the basic (er, BASIC) If-Then statement is one of the most important phrases around.  “If we give him a Palm Pilot with a detachable keyboard, then he can type his class notes and thus will be able to take more complete notes.”  This If-Then formula not only acknowledges the issue and the ability, but takes it even further to recommend how to move past the problems to stay focused on the abilities.

Small words don’t earn you very many points on a Scrabble (R) game board, but they can create a surprising amount of results in everyday life.  Try seeing how many times you can substitute an “and” for a “but” in everyday conversation.  It will seem awkward at first, given decades of saying but-this and but-that all the time.   Keep at it, as you remember at times.  If you give it a try with your family, your coworkers, your school people, then I think you’ll find a growing trickle of small changes, like the melting icicles of early spring.

Games People Play (off and on the court)

TODAY’S QUOTE:

“Nobody realizes that some people expend tremendous energy merely to be normal.”
~Albert Camus

There’s a newsclip kicking around the Web, from the CBS Evening News of February 23rd, 2006.  Normally I don’t pay attention to basketball.  Or baseball.  Or football.  Or hockeyball (joke).  This newsbite is different.  So different that CBS felt compelled to make a last-minute change in their programming plans to show this “incredibly powerful” story.

The newscaster explains, “Because he has been so devoted to the team, for the last game of the season, Coach Johnson actually decided to let Jason suit up – not to let him play necessarily, just to let him feel what it’s like to wear a jersey.”

And then near the end of the game the coach even lets him onto the court.  Finally getting to play in a game, rather than fetching water and toweling down sweaty team-mates, the basketball player made six three-point throws.  The crowd goes wild.

Gee, you’d think that a coach would want a player who could shoot like that to be on the court all the time …

View the newsclip now 

The whole situation reminds me of how I felt every year when the “Rudolph the Red-Nosed Reindeer” animated Christmas show appeared on television.  There was always something unsettling about the whole story of this reindeer with the glowing nose, and it wasn’t until late in my own high school years that I figured it out.

No one liked Rudolph because he was different.  In the beginning, his family tries to hide his nonconformity, covering up his nose with mud, but then Rudolph talks funny from the congestion.  Still, it is deemed better that Rudolph be perceived as talking funny, than for everyone to actually know the truth.  Eventually the disguise breaks down, and Rudolph’s glaring, glowing nose is revealed in the rough-and-tumble of playground mischief.  Everyone is horrified.  They always are when someone tries to “pass for normal” and is eventually outed.  People feel deceived, because the Other was not what they thought.

The reindeer games coach orders Rudolph away. So shunned, he leaves his North Pole village, joining up with another misfit, Herbie the elf, who wanted to be, oh horror, a dentist rather than a toy-maker.

A few years later there is a Christmas eve of such epically foggy proportions that Santa Claus cannot make his usual gift-giving rounds.  Santa realizes that he can still do so if Rudolph is allowed to lead.  Eventually everyone decides to tolerate the mutant reindeer, perhaps accept Rudolph a little bit, but only because he can be useful to them, lighting the way for Santa’s sleigh.  (Herbie gets to be a dentist, another occupation that is tolerable because it is useful to the others, rather than because Herbie has a passion for dental care.)

The program was made in the early 1960’s, coming off of the ultra-conformism of the 1950’s.  Everyone thought it was cute and sweet.  I couldn’t explain the intrinsic discomfort I felt as a child, not from viewing that particular show, or even in everyday life.  Nor could I explain why I identified so strongly with Rudolph or for that matter, the alien Spock from “Star Trek”.  When the neighbor girls compared me to the Professor from “Gilligan’s Island”, I couldn’t understand why that wouldn’t be a compliment – he was the only sensible one of the castaways!  But even the Professor, a quintessent geek (though thankfully neither of the foolish nor ugly duckling sort), was the odd one out.

The telethon poster child or “odd team-mate” is held up in the same way, but also held away at arm’s length, and Othered.  We’ll let him be on the team in an accessory manner because it makes us feel munificent, and because he might be exceptionally good at something we need.  (Were he merely mediocre, or even near or at the bottom of the list for overall skills, would he be on the team?)

But the mere fact that a team-mate is known more for being different than for any aptitude or acquired skill, and even the fact that stories about such people are circulated as ABSOLUTELY AMAZING! and exceptional shows that pity is still stronger than acceptance.

The problem with pity is that it creates division; it puts distance between people.

Pity prevents respect by implying inferiority; there is a humiliating lack of worth, because the person is defined by what they cannot do instead of what they can do.  Victims receive pity – but nobody wants to be a victim!

Pity is disempowering.  It does not decrease burdens by sharing resources and abilities. The people who see only the “broken” part are uncomfortable; that discomfort is a kind of Schadenfreude, a sense of relief that the bad thing (the disability) did not happen to you.

Pity is like magical thinking, where people want to give Fate some kind of token payment to avoid similar disaster from befalling them.

Pity is similar to both fear of the other, and to contempt for the Other; the Other must somehow have done something bad, and “deserved” their fate (as given to our social mores from the Puritan ethos).  Either way, it is dismissive of the person’s concerns, and denies their opinions, and their own personal view of reality.

Pity is not the same thing as compassion, where the other person is seen as being similar to one’s self, and is identified by who they are, is known for what they can do, and is accepted as being a worthwhile person to play with or work with, and to know and to love.

“Because he has been so devoted to the team, for the last game of the season, Coach Johnson actually decided to let Jason suit up – not to let him play necessarily, just to let him feel what it’s like to wear a jersey,” says the newscaster.

::BARF::

Meanwhile, too many people work endlessly hard at trying to “pass for normal”. The problem with pretending to be normal is that it gives power to the paradigm, to this concept of normalcy.  As long as the person is pretending to be whatever kind of average-normal they are not, they are devaluing themselves and allowing others to devalue them, and they are handing over their personal power to the realm of the imaginary Normal people.

Normal, average people are imaginary, because no-one is wholly average and normal.  However, the imaginary-normal people are a very real majority group.  They all pretend to be normal, and en masse they have majority power under that paradigm.

Wow, isn’t it absolutely amazing!  Autistics can play basketball.  Next thing you know, they’ll let Negroes or women play basketball …

Feh.

The Trouble With Tolerance

“When bigotry is the dominant view, it sounds like self-evident truth.”
-Harriet McBryde Johnson

Last Sunday someone mentioned something (which details escape me now) but in the dialog was one word that reverberated, rolling around my head noisily long after the event:  Tolerance.

Gee, it sounds like such a good thing, right?

Obviously it’s better than intolerance, where people are actively against nonconformity, even violently so.  Intolerance is all about bigotry, homophobia, misogyny, racism, xenophobia, et cetera.  In contrast, tolerance means that the different, the Other, is allowed.  Those that are tolerated are to not be actively hurt, or discriminated against, or “converted” through sheer force or coercion into dire dilemmas of horrible-choice or even-worse-choice.

At best there is the decision that although there is not agreement as to the validity of someone else’s differences, the existence of that difference is still allowed.

The trouble with tolerance is that it can imply a bad thing that someone else is merely “putting up with”.

Mere tolerance can mean that the Other is actually wrong and unacceptable.  We all feel good because we’re being so modern and virtuous and civilised because we tolerate it.  Not like those other people in whatever-country, or those who practice whatever-religion.  We don’t tolerate intolerance.  Er, whatever.

This concept really bears consideration.  There’s an inherent conflict.

In truth, I don’t accept everything people believe or do.  I heave a big sigh with the American Civil Liberties Union ends up defending a Ku Klux Klan group the right to stage an event.  I hate the KKK’s ideals; it was very disturbing to find a recruitment flyer on my driveway with my morning newspaper some years ago.  There is no tolerance for any who harm others, especially children.  However, when considering things like free speech issues, I realise that I could just as easily be amongst a group that the mainstream does not want to tolerate, because I have been fatally Othered by some opinion or identifying trait I own.

And yet I still welcome acceptance of inborn differences amongst people, all those little quirks of genetics that determine our appearances and physical and mental abilities and neurologic tics and our loves.  I want to go even beyond that; I cherish the multitudes of differences, for these are what make us who we are, they are our strengths and blessings.  Diversity is just as important in the human gene pool as in any other part of ecosystems.

While teasing out this tangled mess, I find that at least for now, an essential kernel remains:

Appreciation for all kinds of people, and tolerance for the rights of different beliefs and opinions.

Bibliomeme

Mum-is-thinking tagged me to answer a book survey. My answers are a motley collection, and I think that motley collections are always the most interesting. I’m guessing that people like to read these kinds of meme-tag surveys because they either want to hear how others have loved the same books they have, or else want to hear about books they had not yet (or possibly would not have) encountered, but would also enjoy.

One book that changed my life
I’ll have to take this is “one of many” rather than as “the one with the greatest impact” because surely different books have had done this at different stages in my life. There are a lot of contenders for books that were the first (if not always the best) to open up my knowledge-base to completely new fields of understanding, such as those on AD/HD or autism. Those are valuable in that regard, but more important are the books that give a different kind of insight, looking behind social paradigms to critically analyse the how and why of human interaction.

For the way that humans interact with their environments, Donald A. Norman’s The Design of Everyday Things looks at the problems that bad design causes people, and how people assume that their difficulties are considered to be their fault, rather than bad design. He touches but lightly on the issues of handicap accessibility, and I don’t think he mentions Universal Design at all, but the central message is still the same. My inner geek adores good, useful, imaginative and æsthetic design, and it drives me nutz when tools, machines or environments are badly designed.

For the way that humans interact with medical & emotional health care providers, Paula Kamen’s All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, And Only Slightly Enlightening Headache that describes some of the problems with the medical models of psychology, such as being a problem patient rather than a person with a problem, or the need to find “cures” for everything when instead one can be helped and be healed without being cured.

Strong messages from both of these books.

One book that you’ve read more than once
Who doesn’t have a comfily-tattered set of J.R.R. Tolkien’s four-volume Middle Earth trilogy? (Yes, trilogy means three books, but The Hobbit is part of the Lord of the Rings, and science fiction & fantasy is rife with trilogies composed of more than three volumes.) For my favorite re-read when stuck abed with a nasty virus, I really enjoy Anne McCaffrey & S.M. Stirling’s The City Who Fought. It’s a fun piece of adult science fiction with the well-drawn characters and nitty-gritty techy details and swashbuckling action that make for a engaging read.

One book you’d want on a desert island
Most people like to pack either something really long, or else an extensive practical reference book. But I don’t think that I’d want to be stuck with some interminably long piece of fiction, no matter how well-written, and I’ve probably read enough references over the years that I could eventually solve any manner of functional issues. What I want would be a huge book of blank pages, so I could keep a journal of thoughts about various things. It’s often difficult for me to work out mental explorations without a written medium. I’ll remember or figure out the right knots for lashing together poles, but being able to compose my thoughts is integral to my equalibrium.

One book that made you laugh
Terry Pratchett’s Mort was the first Discworld novel I ever read, and Death is still my favorite character, possibly because he’s so practical and the human world doesn’t always make sense to him. Plus, he talks in ALL CAPS. Soul Music is damn funny, too. I love the puns and unexpected turns in Pratchett’s books.

One book that made you cry
Ebbing & Gammon’s General Chemistry (sixth edition). The authors of this uninspired, heavy tome had an interminable number of equations to solve. I made it through four semesters of chemistry and sweated through this volume for half of them.

One book you wish you had written
Actually, I’m still compiling thoughts for my next book. I don’t tend to dwell on wish-I-had’s.

One book you’re currently reading
I never read just one book at a time, which explains why it takes me so long to finish anything! I just finished Joseph P. Shapiro’s No Pity. I’m furthest into Majia Nadesan’s most interesting Constructing Autism, which I will finish as soon as I remember where the hell I left the book laying about.

Currently my bedside pile contains: Thomas Skrtic’s Behind Special Education, Alfie Kohn’s What Does It Mean to Be Educated?, Kegan & Lahey’s How the Way We Talk Can Change the Way We Work, Marshall B. Rosenberg’s Nonviolent Communications, Fisher & Shapiro’s beyond reason, and Walter Kauffmann’s translation of Basic Writings of Nietzsche (maybe after finishing the book I’ll be able to spell N’s name without looking it up every time). I had just started on Richard Dawkin’s The Selfish Gene and then my daughter took it back with her to college; bad girl. By default I’m also reading Hardman, Drew & Egan’s Human Exceptionality: School, Community and Family because it’s my current textbook.

One book you’ve been meaning to read
The future pile-by-my-bed: Daniel C. Dennett’s freedom evolves, John H. Holland’s Hidden Order: How Adaptation Builds Complexity, Douglas R. Hofstadter’s Gödel, Escher, Bach: An Eternal Golden Braid (I think that one may take a study-buddy to gain the most benefit), the Routledge Critical Thinker’s series editions about Gilles Deleuze, Jaques Derrida, and Michel Foucault, Eli Maor’s e: the Story of a Number, and David Darling’s Universal Book of Mathematics. Doubtless there’s more, but that’s what’s on that section of my bookcase.

Tag five other book lovers
Anna, Catana, David, Liam, and Whomever wishes they’d been tagged but felt like they needed some kind of “official” sanction to simply write and post a list!

To Be A Person, or, Not To Be A Person-With

I promised to address “person-first” language. (And my pal David promised to “rip the piss outa [me]”, for which I’m curious what-all he has to say. Then again, I’m really curious as to what all of you readers here have to say; just who ARE you people??)

Person-first language refers to saying things like “person with a hearing loss”, as opposed to someone “being hard-of-hearing’. The philosophy behind this is that the person is more important than an impairment they have; that a person should not be known by a diagnosis. This is a reasonable goal, but like anything, it can be taken to extremes and has been.

I think “person-with” makes better rational linguistic sense when the “with” is a temporary (or preferably temporary) condition, as in “person with broken leg” or “person with cancer”. Person-first language makes all kinds of sense when trying to avoid the bad hospital habit of saying “the emphysema in 402”. The ENT says I am a person with hyperacussis and tinnitus.

Actually, I would end up saying things like, “I am nearsighted and have Auditory Processing Disorder”, and skip the whole person-with scenario. “I am brunette” is infinitely handier than saying “I have (or am a person with) brunette hair”. It’s understood that it’s my hair color we’re talking about, and that a description of me is only slightly delineated by that descriptor – I’m more than my hair.

When the condition is rather a state of being — something fairly permanent, whether acquired or developmental — then it’s (noun) as in autistic, Deaf, gay, male, dyslexic, Canadian et cetera.

Person-first can be prissy and awkward and sometimes is simply benign earnestness at being polite – well-intended but treacly. Or, person-first can be Politically Correct at its most obnoxious, demonstrating a belief that the condition is “recoverable” and thus meaning something should be done about it. At its worst, person-first demonstrates a belief that the condition is shameful, to be avoided or hidden, such as a person with homosexual tendencies who just needs a good dose of religious correction and a burning desire to be morally uprighteous and “normal”.

Early in my life I started doing things left-handed, so they made sure I learned to write with my right hand. And I’m still left-handed. My inner right-handed person was never “recovered” from that pathological condition, because that imaginary person was never there. I’m a lefty who has learned how to be ambidextrous, which often means that I’m clumsy any way I go about it. Trying to pretend I’m really a right-handed person and calling me such never changed that. Likewise, autistics are not broken or diseased neurotypicals, anymore than gays and lesbians are not confused or immoral heterosexuals.

(I just wish there was a better term for “I have ADHD”; ADDer just doesn’t cut it for me. Maybe they’ll rename it – again – and we’ll have a more euphonic term.)

What’s the Use?

Long day; short post. Quite likely my shortest post ever.

Does everything and everyone have to have a “purpose” in life? ‘Twould seem so, according to the Bible. However, “purpose” is an anthropocentric point of view: everything is made for the use of people, including other people.

Sometimes the benefits (not “uses”, but benefits) of having different people around are not obvious. Those odd people don’t fit the neat cogs of traditional social machinery, and society has had to invent new mechanisms to “deal with” the misfits and to isolate them from the social workings.

Thus for example, we get “special education” programs to make up for the fact that the current educational system doesn’t work all that well. Being a heretic, I don’t believe that an educational system that enables students to learn should have to be “special”. (I also don’t believe in the segregation.)
What is really needed is the understanding that it is not the people, but the social machinery which is lacking something that creates this mis-fitting, and therefore, the misfit.

In the way that travel enables us to understand what our home geography and culture is like (by way of comparison and contrast to that which is so familiar as to be unseen), the misfit enables society to learn more. This happens indirectly by illustrating how the social machinery is lacking. Furthermore, the social machinery is often lacking for a lot of people, not just those for whom it’s such a poor fit as to be outright unusable.

This informing also happens directly by the communications we get from all the misfits. Of course, it’s not true communication unless there are those willing to listen, and to take the messages seriously.

People do not have to be equivalent to be equal in their inherent value.

Making Sense of Rules

Harry Wormwood to his daughter Matilda, from the movie based on Roald Dahl’s book, Matilda:
“I’m right, you’re wrong. I’m smart, you’re dumb. I’m big, you’re little. And there’s nothing you can do about it!”

To make sense of something, to understand how it works, what is significant about it in your own experience, in short, to create a meaningful gestalt, requires that one be able to manipulate it physically, to stretch it, pull it, push it, turn it upside-down, use it in different ways and then compare and contrast the results. This is the active process of learning.

Making sense of the social world and its often unstated rules requires that one be able to do original research in the nature of it, just as one does with the physics of the universe. The problem however, especially for our autistic/Asperger’s students, is that the social world is not nearly so consistent as is the physical world or the digital world. You mess around with mechanical objects or video games, and the responses will consistently fall within the same parameters. Likewise, the ecology of the biological world is more complex, but still rather straightforward.

However, human social systems are rife with “fuzzy logic”. The social sciences are seen as comparatively “soft” sciences because sorting out the variables and interpreting the results is so damn tricky. Given such complexity and unpredictability, it’s no wonder that autistics, whose social radar is less acute, often prefer to stick with the natural sciences, or view themselves as researchers of human beings.

People not only need worlds that they can make sense of; they also need worlds that meet their needs. The needs of children and students are somewhat different than those of adults. They are still very much in the process of building understandings of the social world and of their places in them. They need to be able to create systems that are functional and adaptable, and they need to find a place in society that allows them to continue to grow as individuals, that draws upon their personal strengths and works with their individual weaknesses, and that respects the parts they will have to play throughout their lives.

Rigid, unyielding rules systems built upon the premise that the child or student is a bad person, who needs to be controlled, and always told what to do, cannot effectively provide that.

There’s a kind of physics in social relationships: push on someone, and they will push back with that familiar “equal and opposite reaction”. No one likes feeling controlled, like a helpless pawn in some chess game. Everyone wants to feel that they have some measure of say and control in how they get their needs met – this is what empowerment and respect is about.

Empowering others is scary for some people because it requires relinquishing some of their control. Or rather, empowering others is about giving them opportunity, the right tools, and letting them have responsibility. The whole crazy part about the current scenario at the JRC is the people in control complain that they “have” to use force (pain and other punishments and rewards) because the students would otherwise be irresponsible.

This isn’t about a child “testing authority” as feared by disciplinarians; it’s about the student being able to try things out, practice, reflect, discuss, acquire new skills, and practice some more. Being given absolute rules circumvents the learning process, and later when they need to adapt to novel situations, leaves the learner in the lurch, stranded without the knowledge of how to devise new strategies. They only have a limited number of tools in their social toolbox, and little knowledge of how to build new kinds of tools. If we go telling children what to do for their entire lives, then we shouldn’t wonder that they become young adults without the ability to think for themselves and to be responsible without someone monitoring their actions.

How do children learn to be responsible? It takes practice. If you want people to know how to be inner-directed, moral, responsible people, then they need the opportunities to learn how, and they need adults to share their wisdom and their power and to help them along the way.

Moving Into Commitment and Inclusiveness (PART 2)

Implementing personal change creates opportunities not only in the immediate sense, but also because you will find yourself connected to others in new and surprisingly beneficial ways.

However, the ripples can ricochet back in unexpected manners. Personal change that moves towards social change is always a threat to someone – often masses of someones. People often find change to be a threat, or they find differences to be threatening. Agents of change that push at the paradigm are therefore met with resistance. (Excruciatingly earnest but ineffective revolutionaries typically underestimate the weight of social inertia that buffers systems against major changes.)

But what is it that makes change – even social change obviously intended to improve opportunities for people – such a threatening concept? Why does challenging social assumptions create such opposition?

A lot of it has to do with the discomfort of having the world view pushed and challenged. "Cognitive dissonance" is an emotional reaction to events that contradict what you know; they make your brain hurt, as it were. To be able to accept that what you are experiencing is real means that you have to change your attitude, OR if you are to maintain your beliefs then you have to change how you are perceiving things. So, do you adjust your understanding of the world, or do you imagine things to be different than they are?

In this case, someone acting out of the paradigm (be it a social hierarchy, a expectation for a particular kind of social interaction, or a personal ability) challenges not just the hidden assumption that there is a paradigm. It also challenges that everyone must be contained and constrained within it, and that what they do is because of their position in that paradigm. It’s an artificial social construct. It’s not “real” except what we make real, and we can change that.

If people can't imagine why you would act the way you do, they may erroneously attribute various motivations or faults to you, despite the lack of real evidence for such. They then try to “put you in your place” because you are acting out of character, and not fitting into the expected social rôles. When you are trying to push for social change of some sort, especially for acceptance of differences, you are going to get a lot of challenges to this new agenda of inclusiveness.

People who assume they are normal can be trouble. They tend to go around changing the world to suit themselves; their standards are "community standards". "I'm normal, so if I like it this way, almost everyone else will. Right?”

~Glyn Webster

Inclusiveness is an extremely dangerous idea, because it redefines all of the miscellaneous parameters of what is “normal”. A great many ideas about “abnormal” did not fully exist until someone came along and set down specific boundaries about what constituted “normal”.

Artificial boundaries exist everywhere. A lot of people’s definitions of themselves are what groups they belong to, and those groups are partly defined by “otherness” – who and what they aren’t. People who have spent their entire lives in a world defined by exclusion, where exclusion defines many of the others as being not-normal and therefore not-okay, often do so without any consciousness about this exclusionary paradigm. It’s too entrenched and socially invisible.

Inclusiveness will only become normal when there is no Other to exclude. To do that, we have to realize that in most ways, in all the important ways, everyone is okay-normal for who they are. (It is intentional behavior that is acceptable or unacceptable, not the intrinsic qualities of a person.) We all pay a great price when people must go around pretending to be something else than what they are and someone else than who they are, and trying to "pass for normal".

andrea

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