— Jesus Shuttlesworth (@AlmighDee_) July 11, 2016
I was going to call this my “Hope For 2015”, but that is so passive and useless. Anybody can – and lots of people do – post warm, fuzzy notes with Hopes for the New Year, and others click and share. Lovely.
But this is NOT all warm & fuzzy. It’s literally dead serious (with many murdered throughout the year), and quite often blunt, because I am blunt at times. It’s also a call to a change of perspective for some of you.
Deal. Think about it. I’m not a lone voice. Click and share.
Children with disabilities or other differences are not diseased or broken. The same is true for adults. Yes, those “poor, little disabled children” grow up into disabled adults. Gee, so where’s the concern now? It sure isn’t at work; in the U.S. general unemployment is at 5.3%, but for disabled adults it’s twice that at 10.8%.
Nor are autistic or ADHD children some kind of modern mystery; millions of such adults have been around for decades, just unrecognized for lack of diagnostics. Most of us are profoundly relieved to find out Why. We still have to deal with the details, but that’s easier when you know that not all your difficulties are from some kind of moral failing, or from a lack of trying (and trying, and trying).
Some were kept at home, because until passage of the IDEA in 1975, US law did not require public schools to teach everyone.
Some were warehoused in institutions, badly treated, undiagnosed or misdiagnosed, and oft uneducated.
But many of us were there; how we struggled through school and life, without accommodations or understanding, and often the target of bullying by peers and even school officials.
Untold numbers of women and men just knew themselves inexplicably “a bit odd”, and did best they could; some succeeding, others not so well.
At worst are those who not only lacked resources, but were shunned by society’s classism, ableism, racism and sexism, and (if still alive) are found among the imprisoned, derelicts, addicts, abused and enslaved populations.
We are neither inherently stupid nor incapable of learning. Learning differently means teaching differently. Find what works. Everyone has limits, but a consistent lack of success means you should use another method, as well as more time. Sometimes the learning is highly irregular in pace. Tie learning to interests to motivate your children and students.
Also, be aware that sometimes the “simple basics” may be entirely bypassed by some students who leap to master higher concepts, albeit often forever struggling with those seemingly “simple basics”. People are humans, not robots. Learning is not always linear.
Never assume that just because someone is nonverbal they cannot communicate. If you’re not getting their messages, then *you* are doing something wrong. Nor should you assume that because someone is nonverbal that they cannot understand what people say (though the processing may sometimes be delayed). Nor assume that because someone has been nonverbal for years that they’ll never speak. And damn, will you get an earful.
Importantly, just because someone is able to speak or do a task one day, that does not guarantee consistent results. It’s the nature of disabilities — regardless whether considered mental or physical – all involve the brain. Brains are funny things, and many of us have a few buggy Beta-version programs in our wetware. It’s frustrating as hell for all involved.
But don’t assume the “could-then-can’t-now” is intentional. “Oh, he can hear me when he wants.” “Well, you could solve those equations just fine yesterday.” I can guarantee that after a lifetime of such, ridiculing people and punishing them for things they cannot help only increases performance stress.
While that stress might increase focus from sheer terror, it often squelches overall functioning. (Do you want me to listen to you, or try to recall yesterday’s process, or slowly figure it out on my own? I can only do one — if my stomach will stay down.)
Ignore the media tropes and centuries of religious hype: disabled people are neither inherently amoral, soulless and evil, nor are they infinitely happy, friendly and angelic. People are people. A few will be nasty bits, some will be profoundly good sorts, and the rest are just ordinary folks who get mad, sad and glad, who screw things up sometimes, and who will also serve others selflessly despite bearing more abuse than anyone should.
We are definitely not incomprehensible, incomplete, little autism-puzzle-pieces, unloving, unlovable, or uncaring.
We are whole people with all the same cares, needs and wants as all humans. Beware — disability happens to anyone at any time. We aren’t a Them, and YOU can be among the world’s 15% in just one day. We are all Us.
Because tolerance means putting up with something one doesn’t really like, or that doesn’t really belong. We want full-fledged ACCEPTANCE.
Nor should we only be acceptable if we can somehow “overcome” our differences enough to pass for Normal Real People. Trying to “pass” all the time is exhausting, and invariably breaks down, oft resulting in the [supposed] Normal Real People assuming that one is lazy, stupid, crazy, all the above, or worse.
Training children for hours a day how to artificially perform “acting normal” does not serve to help them learn how to function best in the world. Yes, of course teach good manners, social and work skills. But suppressing every twitch of one’s natural being adds to stress, making everything else yet more difficult. This is especially when performing like a “normal person” means not doing the harmless things that reduce stresses.
I must call out the terrifying, unaddressed assumption which underlies so much daily trauma: “The reason the disabled [children] are targeted by bullies is because they are perceived as being weird”. Despite the pervasiveness of this social theme in society, most people are functionally unaware of it, all the while instilling in their Normal People children the same message. Normal People children need to act normal, and not act like That Kind. After all, that’s how the Normal People know the others are That Kind, who’s Us and who’s Them.
But it’s the disabled and different who are taught, over-and-over-and-over that not only is it their fault for behaving or looking weird, BUT ALSO if they weren’t so weird, well then they wouldn’t be bullied. “Quit being so weird! Just say No! Just say Stop.”
Just say BULLSHIT. Because this is blaming the victim. The problem is not that everyone isn’t the same, the problem is that there are bullies.
Even worse, blaming the targets actually empowers the bullies, because the social story says it’s the victim is the one who is acting wrong, so it’s not really the bully who is to blame.
Let’s just top off all that existing anxiety and depression with the trauma of trying to seek justice, but being told again that, “Well it’s your fault, you know. Attracting attention by being weird, and bugging people. You need to quit making trouble now. You already take up too much of our time with all of your “special” needs. Quit whining and go deal with it. — But no fighting, because we’ll know it was you who started it.”
By the way, it’s not “just a kids at school” thing that everyone will “grown out of”. It continues on through college, and happens at work, too.
It is NEVER acceptable to murder disabled children. Nor should these repeated, horrifying events be considered “understandable” or “excusable”, with the murderers being pardoned just because their son or daughter had a disability.
Increasingly more prevalent in social media, the crime becomes insidiously deemed more and more acceptable. Murderers re-cast themselves as martyrs, acquiring champions to their cause. Throughout repeated blog posts and news stories, they bemoan how taking care of disabled children is just too unbearable, they had to take care of them every day of the week, there was never any relief or help. (Even though there was.) Cue the groupies’ hand-wringing and protests upon the villains’ behalf: “Oh but won’t you walk in their shoes, how they’ve given up their lives, this wasn’t at all what they wanted.”
For in true sociopathic fashion, the poor, long-suffering parents revel in the attention, announcing to the world – sometimes ahead of time — what they have done, and all the while describing themselves as the victims. The dead children (young or adult) are unwanted, and deemed unwantable, less than human just because they couldn’t speak, or needed medical treatments, or used a power chair, or didn’t play with their toys the “right way”, or wore adult diapers … No one would want to live like that; the thing’s better off dead. And what of the groupies? Well, where do you think people get such terrible ideas that it’s okay to kill one’s own children?
Quit using those heart-tugging videos, walk-a-thons, telethons, and other grand-society functions to win your supposed Cosmic Brownie Points for giving us your pity. Please stop dumping upon us the largesse of your unwanted rags (so Victorian, so passé), or creating useless functions requiring us to serve as targets of unwanted helpful-helper-helpiness for your ego-boo.
Get disabled people out of “sheltered workshops”. Yes, people need work they are suited to. But the segregation and token sweatshop “wages” are an embarrassment and humiliation to all.
Do not assume your children will remain permanently childish and incapable — they mature on their own timelines. Allow adults to be adults. Support their needs and interests, but neither dress them like children, nor expect them to live their lives in naïve pre-puberty stasis, without adult desires for socializing with adult peers, life-long learning, mastering skills for some kind of job (even if that job is “just socially productive work” rather than traditional work), and yes, having a love life, however that may be expressed.
Most disabled or different people are not looking for cures to magically change them into someone else, some kind of fantasy Normal Real person that their families wanted instead. Our differences may result from physical events, by random mutation, and / or genetics. Your genetics. We are family. I’m Me, and I like being Me. If you somehow changed all the differences in my brain, I wouldn’t be Me anymore, with all my quirks and abilities.
Of course it will be great to find a means for preventing migraines, epilepsy, fatal medical conditions, et cetera. But it’s also a sad fact that some people have been so convinced of their undesirability as disabled human beings that they can only see “cure” as a means to being an acceptable Normal Real Person. (Worst of all, some people commit suicide because they’ve been taught to hate themselves, as useless and unwanted.)
But what’s really alarming is all the fund-raising, talk, research, and work going on today to eliminate entire kinds of peoples. I’m talking about the thousands of selfish individuals and sociopaths who believe that anyone with neurological or morphological differences should not exist at all, because That Kind takes up too much time, money, and resources.
That’s not “looking for a cure” – that’s eugenics and euthanasia, the same ideas that led to the Nazi Aktion T4 program and other horrors. (In my youth, the state hospital was still in the regular habit of sterilizing people. Had I been institutionalized, I might well not have had my lovely children and grandchildren.)
Yes, we want assistance, we want things that help us achieve what we want in life. Getting the things one needs to learn effectively, to move about, attend to their own needs, to work, to play, to be a part of the community, to have lovers or families. These things should not be seen as extraordinary, special, absurd, or a waste of money, just because they aren’t the same kinds of things used by other people. 15% of the people in the world have disabilities. That is a lot of humanity, and many are uneducated, abused, neglected, avoided, or shut away, depriving the world of incredible amounts of untapped abilities and talents.
to 1994. Just the ordinary sort of 1994, when my children were two and six years old.
We are watching X-Men during Saturday morning cartoons. My son is really into super-heroes, and in case you don’t know, the X-Men are mutant super-heroes.
My daughter asks me, “What’s a mutant?” I take a deep breath, trying to figure out how to explain genetic mutation to a six-year old. Thankfully, with my children this wasn’t too difficult.
“Remember the other week when I told you what DNA is? The instructions that tell the different parts of your body how to grow?” She remembers. “Sometimes the DNA changes, and that’s called a mutation. A Monoceratops changing into a Triceratops s a mutation.”* We watch some more of the cartoon.
She asks me, “Are all mutants weird like the X-Men, and have super powers?”
“No. That’s just the cartoon part. If you always have yellow flowers and suddenly get a red flower, that’s a mutation. In fact, everything in the world started out as a mutation, or else there would be nothing but itty-bitty plants floating in the ocean.”
She decides that would be boring.
“Why do those people hate the X-Men? The X-Men are good guys.”
“They hate them because they’re bigots. ‘Bigots’ means when people hate other people because of something like what church they go to, or where they’re from, or how they look. The people hate the X-Men because they look different, and can do different things, and they’re scared of them.”
“But that’s not fair,” she complains, “The X-Men are nice.”
“That’s right. Bigotry isn’t fair, and it isn’t nice.”
“I like Storm the best.”
Storm is a black woman with long white hair who can control the weather, and fly. “Me, too.” I answer.
“I want to be Storm for Halloween.”
A few nights later, we are reading The Enormous Egg by Oliver Butterworth. This is one of my favorite stories from when I was growing up, a tall tale about a Triceratops dinosaur that somehow hatches from an egg laid by a chicken, and the consequences for the boy in the story. She has loved dinosaurs since she was a mere tot of two. We read two chapters into the book. She read a few paragraphs, sounding out new words, and then realised, “The chicken laid a mutant egg!”
This is why you should watch television with your children. In one Saturday morning cartoon, we have covered biology and bigotry, and made a tentative Halloween costume decision.
* I know, I know, it’s more complex than that. All you evolutionary biologists out there will have to work with me on that. (-;
“Now remember — you’re special, just like everyone else!”
It seems that classic punch line (for all the jokes on useless self-esteem boosters) was never truer. At the ever-entertaining NeuroLogica Blog, Steven Novella explains recent findings that everyone is a mutant.
Given my numerous neurological quirks, I had long assumed my mutant status to be true, and when finally diagnosed with prosopagnosia (which can result from a single point mutation), I then took it to be a given.
As Novella, points out, not all mutations give one super-powers; in fact, most of mutations are neither beneficial nor detrimental. There’s certainly nothing exciting about hyperacussis, as I’d previously described in Can you sue your Fairy Godmother for malpractice? Some things like the are just annoying; were I graceful, the hypermobility might have enabled me to be a dancer or gymnast. Instead, I’m just arthritic and bruised, for all it’s handy to always be able to reach that itchy spot.
100 – 200 mutations per person may be trivial in the genomic sense, but is far from trivial when considering human diversity. Mutation is normal. It’s ubiquitous. Not only are there no “perfectly average” people, but we’re all mutants. Now, can we finally lay disablism, transphobia, and the rest of the xenophobic rot to rest?
Now ‘scuse me while I go for a soak in the tub; maybe I can distract meself from this silly jingle that’s gotten stuck in my head:
I’m a mutant, you’re a mutant, xe’s a mutant, too.
We’re all alike in our differences, so whatcha gonna do?
Check out this small meeting room (one of a number of diverse, really cool nooks) at the Google offices in Zurich. Unseen in the first shot is the firefighter’s pole to slide down from the floor above! It sure beats the hell outta the industrial-grey cube-farm where I did tech writing. But what’s fabulous about these offices (and other Google buildings) is not just the physical environment, but also the social and business culture that values play and creativity, rather than viewing them as frivolous distractions from “real” work.
There is a world of creative people out there actually making living wages in different businesses, using their knowledge in imaginative, useful and positive ways, and I want in. I feel like a moth beating against the window pane … it’s enough to make one cry.
(But what kind of job does a worker bee with degrees in science, a teaching/special education background — but not a secondary-school teaching certification, and skills in art and communication do?)
In the field of medicine, there’s a saying that, “If you hear hoofbeats, think horses, not zebras.” This means that although medical students will learn of a great many odd diseases, some of them are quite exotic (“zebras”), but that most patients’ complaints will resolve to common causes (“horses”).
Which of course does not mean that one won’t encounter “zebras”. Once a very great while there will be someone with the rare genetic disorder or unusual psychological glitch. Mayhap even someone with several rare genetic disorders and unusual psychological glitches! This insect profile post is dedicated to all you readers out there who are “zebras”. (Wave to the crowd folks; let them know that “rare” is not synonymous with “you’ll never meet them”.)
Like medical zebras, Zebra Swallowtails (Papilionidae: Eurytides marcellus) are rare amongst butterflies. They are not endangered, but unlike Monarchs, Cabbage Whites or Painted Ladies, you don’t see these zebras very often. This is a big butterfly, about 6-9 cm (2.5-3.5″) wide. They live in the eastern half of North America, and can be found wafting around the borders between fields and woods or streams. The reason such a large and striking butterfly lives in such obscurity is not for limitations in ecotone; it will live most anywhere but montane and alpine zones. It’s not even limited by breeding season; there are two broods in northern populations, and four broods in southern.
Rather, they are rare because the larvae are monophagous (a fancy word for “only eats one kind of thing” — a parent might lament, “My child is seemingly monophagous upon Goldfish crackers”). Well, plenty of catepillars out there are picky. But Zebra Swallowtail ‘pillars will only eat the leaves of pawpaw trees (Asimina triloba) and other species of the genus. Unlike the ubiquitous callery flowering pear trees or purple barberry shrubs, homeowners and parks managers do not go around planting pawpaws. Unacommodated by the lack of host plants, the butterflies spend their lives beyond the outskirts of the developed world. Only butterfly enthusiasts and rare fruit fanciers who go around planting pawpaws Just Because, or residents of diversified country wilds will have much hope of seeing zebras.
It’s not that medical or butterfly zebras don’t exist, but that you have to know where to find them. You also have to be willing to support their particular needs to have the opportunity to get to know them. But either one of those conditions requires understanding that zebras even exist. Yes, you might even (gasp!) have one in Your Back Yard! It’s true. And now that you have a better search image, I guarantee that you will be much more likely to meet them.
Here in the States, today is Martin Luther King Jr Day, a “bank holiday” honoring the civil rights leader. This means that as a school employee, I get the day off, which in turn means that I have the opportunity to not only contemplate civil rights, but also run errands to places I can’t go because my work hours are the same as their business hours. The exceptions of course are my bank where I need to visit my safe box, and a couple of colleges where I need to visit with people about getting teaching certification. Holy conundrums, Batman!
Anyway, reading through the news brought several things to my attention, and helped clarify some of my own dream for humanity, especially with regards to both diversity in academia and the rest of the work world, the academic responsibility for preparing our students, and the social and political valuation of real science.
Firstly there is the need Continue reading My Own Dream