— Jesus Shuttlesworth (@AlmighDee_) July 11, 2016
I was on the radio! :: hyperactive bouncing :: You should listen to the show — there are links below.
Adrienne Lauby and Shelley Berman, co-hosts of Berkeley, California’s KPFA “Pushing Limits” disability program, invited Mike Ervin, advocate and blogger of Smart Ass Cripple and me to talk about “The Wild World of Disability on the Internet.” Is that fun or what?
Broadcasting is always giddy: I get to talk with interesting people I wouldn’t have otherwise, and the experience is recorded to share with all of you!
Between my ADHD and Auditory Processing glitches, I was worried about accidentally interrupting folks, but I don’t think we had too much trouble with that. It’s always curious to go back and listen to it myself, because one’s voice never sounds as low pitched as it does inside your head. But when I’m speaking, I’m on “live” rather than “Memorex”, and it’s cool to be able to rewind life and hear what happened.
Mike Ervin and I were unfamiliar with each other, but when you get four people together who are passionate about the same things (including hosts who can lead out introductory stories) there is no awkward stage — we hit it off quickly, and Mike has a wicked wit.
Of course, we could have easily spent an hour riotously remarking about activism, attribution errors and other topics. We did talk about those, and amazingly, with less than eight minutes apiece, we also talked about accessibility, myths, inspiration-p*rn, othering, home-care, how blogging “levels the playing field” and more. It was great fun!
(Oh, and related to a question on fidgeting, I mentioned an XKCD cartoon, which I’ve included — with descriptions — at the bottom of this post.)
You haven’t missed it — there are 3 ways you can listen now!
1. Click this link: Pushing Limits: The Wild World of Disability on the Internet
2. Paste this URL into the address box for your mp3 player (iTunes, etc): http://www.kpfa.org/archive/id/82157
3. Click on this download hyperlink:
Pushing Limits – July 6, 2012 at 2:30pm
Click to listen (or download)
“RESONANCE” An XKCD.com cartoon by Randall Munroe, in 3 panels.
1 January 2010 at 7:28 (Community)
And may your household plumbing continue to function!
26 May 2009 at 5:06 (Accessibility, ADD/ADHD, Advocacy, Arthritis, Auditory Processing Disorder, Community, Deaf / Hard of Hearing, Gardening, Inclusiveness, Invisible disabilities, Physical impairments, Work / Employment)
They’re out. Or, Out. We have the exquisite “Privilege of Being Clouted By Cabbage” and are navigating the hazards of the supermarket. When things are done the way they’re supposed to be, going to pick up a few groceries is just as boring, or as Dave discovered, lonely, for disabled people as much as it is for everyone else. But sometimes it isn’t, such as when Wheelchair Dancer finds herself navigating the hazards of anonymous donors that leave awkward brochures under her windshield wiper, and then dealing with the even more awkward social fallout with the clerk who’s assisting her.
People with a variety of disabilities come to the store to get groceries, movies, dry cleaning, take-out food, postage stamps, floral arrangements, and because it’s this time of year, garden plants, which is why I am working there. I shouldn’t be surprised, but I am bemused to report that I realised that people with physical ailments are shopping at the store alla time! After all, that is why we have some of those electric carts, in addition to automatic doors, ramped paving, lower check-writing stands, supposedly-accessible bathrooms*, et cetera.
Most of the time I just interact with the public as a “normal” garden center employee, but sometimes we are also interacting with that subtle overlay of disability, which entertains the social scientist part of my brain.
Being the token horticulturalist, I answer questions, help customers plan flower beds and suggest suitable plants for locations. In addition to working the register, watering, deadheading and “facing” the stock (moving pots towards the fronts of the benches to fill in holes left by customers), I work with the others to come up with æsthetically-pleasing displays of the plants. (Although there is no way of hiding the fact that the corporate HQ plagued us with a plethora of Pelargonium, a visual red tide of geraniums.)
I’ve seen plenty of plant displays at a variety of other stores, and have found their long lines of benches to be annoying. It’s not just that endless tracts of pink & purple Petunias, orange & yellow Marigolds, and red Geraniums are mind-numbingly dull to the point of dampening any sort of inspiration for coming up with container or bedding combinations. It’s that the long lines of “benches” block traffic flow. You feel like you’re trudging up and down the maze of a ticket queue, unable to grab some pots of more-interesting Corkscrew Rush or Calibrachoa tha are hidden over there two aisles over. It’s hard to break out of the march to exit stage left to the register (till), or even quit to go over to the entrance into the store. The long lines of benches are especially boring for children, who have little more than a view of the edges of the benches and the pots, with little respite in sight. (I’ve taken to offering children cups of the cold water from our water cooler barrel, as hot, thirsty children are cranky children.)
Worst, when at these other stores run out of available bench space, a lot of the pallets of potted plants just end up dropped by the pallet jack where-ever there’s room on the ground. This means that the aisles are not really planned, so sometimes there are narrow dead-ends, or aisles blocked by broken bags of mulch, or the plants are simply hard to reach because they are way down on the ground or are way deep in the center of the pallet. They are not accessible.
For a few days, we too of a dozen pallets lined up at the edge of our lot, albeit with sufficient aisle space. It really “made my brain hurt”, because the plants had been shipped all higgedy-piggedy, with shrubs, grasses, annuals and perennials all mixed together. There were Daylilies in four different places around our lot! The flats of shade-loving Wax Begonias and Impatiens and sun-loving Verbena and Vinca were all jumbled by species and color! (And OMG, still more Geraniums. And Creeping Phlox, which only looks nice when it’s blooming, and now we have enough to landscape a highway interchange.)
But thankfully, I’m not the only one who has a strong interest in making the endless flats of plants look more interesting, and be more accessible. We’ve been stacking pallets or propping them up on cinderblocks to put the plants into easier view and reach. (Plus, they’re also easier for us to clean and water — ergonomics, w00t!) We’ve been making sure that the aisles are frequently broken up into side-paths, and we try to keep the aisles 3-4 feet wide so carts, strollers and wheelchairs can get through. It seems to be working well; every day we get compliments about how good the plants look.
But what makes this place pleasant to work for is the concern for helping our customers. Sure, it’s store policy to be helpful (doesn’t every business flog that slogan?), but we are glad to break from running the register or watering to carry things out to the car, or load up bags of mulch and rock, or show you where the Verbena is, or explain the differences between the four varieties of white Petunias. When someone has their hands full, we grab some empty flats, and pull carts (buggies, trolleys) over to make things easier.
It’s this “serve everyone” approach that makes helping people with various disabilities so much easier. One of the other clerks knows American Sign Language, so Deaf customers are sure to look for her (my ASL is rather limited). When the gentleman in the power chair thanked a coworker for carrying stuff out to his van, I was tickled to overhear him say, “No problem! We do that for everyone.” Because we do.
Sometimes the “disabled community” moments are colored in large brush strokes. An older man in a wheelchair came by in search of some herb seeds, accompanied by two women who were of the “care-taker” rather than “personal assistant” mentality. Although neither said anything obviously untoward, there was still a patronizing aura, that his desire to go shopping was being honored but that they were still “humoring” him. It made me uncomfortable, and I kept trying to scan the interactions in the triad to figure out what was going on.
But the women were intent on asking me questions of their own, even as they were simultaneously going through the motions of helping him. “Here’s someone who can help you. He’s looking for some seeds. Tell her what you’re looking for. Do you have any seeds? Do you remember what it was he wanted? Ooh, don’t you just love those pink flowers? Isn’t that what you got on your desk?”
“Well I dunno, but it’s not flowering any more. Was you looking for parsley? He was wanting to grow some stuff from seed. You sure gots a lot of plants out here.”
Trying to track all this verbiage flying by was making me dizzy, and I just wanted to focus on finding out what the man came to get. The customer himself was having some expressive difficulties. (Who wouldn’t have, being around those two all day!) I knelt down on a knee so I could speak with him face to face. I had to. I had to disengage myself from the chatty care-takers who were now trying to ask me random questions unrelated to the needs of my primary customer. I had to be able to focus on what he was asking for, which meant watching him speak. And I had to honor him personally as the customer, not as some second-class accessory.
My knees cracked noisily, and I knelt down on one knee, and we conversed, just the garden center clerk and the customer who wanted parsley seeds, and who considered and then decided against the Doubled-Curled or Flat Italian Parsley seedlings.
After that moment, I stood back up and we were sucked back into the vortex of the chatty care-givers, who asked me some confused questions about houseplants, and then led/followed him over to the main store entrance. I hoped he would be getting the things that he wanted this evening.
Sometimes the community moments come by quietly. I was checking out a couple flats of annuals and several perennials for a woman, cleaning off some old leaves and blossoms and chatting as the register processed her credit card in its own slow time.
“This is going to take me several days to get it all planted,” she offered.
“Well, that’s always a good thing to do anyway,” I offered, affirming her wisdom. “It’s those marathon gardening sessions that break our backs.” The register finally finished hiccoughing through the electronic transmission and spat out her receipt. I picked up her potted rose bush, rested it on a hip, and then deftly tipped up the flat of annuals to balance them on my other hand. (It only sounds tricky; in reality the flats are just boxy grates, and I can curl my fingers into them.) “Here, I’ll carry these out for you,” I said, leaving her to handle her purse and a couple quart pots of perennials, then added, “I can’t garden for ten hours solid since I got arthritis.”
“Thanks. I have RA and can only do so much at a time.”
“Ah, yeah,” I commiserated. “You have to make dinners ahead, because the next day you’re too exhausted from gardening.” She nodded, already tired from just the idea of the ordeal ahead. “It’s fun, but you just run out of ‘spoons’!” And then I loaded things into her car and we swapped the mutual thanks. My attention turned to the gardening work of my own, left uncompleted or never even started. Oh, and errands. Here I was at the market nearly every day, but I kept forgetting to get my arthritis medicationn refilled!
“Hey Andrea,” piped up one of my coworkers, “it’s nearly time for you to go on break.” This clerk is a good guy; he’ll remind me when something is coming up, he’ll remind me when it’s time to start, and even after I’ve forgotten it. He asks me if I remembered to clock in, and reminds me (several times) to copy down the next week’s schedule before leaving. It sure is wonderful to have garden center clerks who are so helpful, especially when you when you’re having seriously distracted & forgetful AD/HD days!
* I’ve never navigated the women’s restroom in a wheelchair, but there are still the stupid doors to wrangle …
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):
“Nobody realizes that some people expend tremendous energy merely to be normal.”
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 …
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.
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 …
Here, grab a cuppa and settle down, and I’m going to tell you a story … oh, pass me those scissors; I’m going to work on this quilt, too.
a long, long time ago (well, 25 years ago, but that’s before some of you were born), there was a bunch of disabled people who were tired of waiting around for some Fairy Godmother to grant them wishes, because you know, like that’s gonna happen! Nowadays we might call them folks, “uppity crips”, and boy howdy were they “uppity”! Why, they wanted crazy stuff, like being able to ride public transit. Yesiree!
So. This is the story: Those folks got together and started PROTESTING, using civil disobedience. (You have to admit, it’s pretty dang clever using sit-ins and such, especially for some folks who come with their own chairs! NO, they didn’t all use chairs all the time; accessibility is about lots of things, not just parking spaces and curb cuts.) Anyway, these folks created ADAPT, which stood for American Disabled for Accessible Public Transit.
(Moment’s pause to re-thread needle.)
Well, that took a few years, but it worked so well, they weren’t going to stop there! Read the rest of this entry »
10 August 2008 at 16:04 (Community)
I am pleased to announce that I have had TWO awards bestowed upon me! (“Aw, shucks…” she blushes.) So without further ado (because these are inadvertantly WAY overdue), I would like to explain them, give my own nominations, and importantly, add in an extra stipulation.
Ideally, I would add in some lovingly-crafted paragraphs describing intriguing details as to why each of my nominees so deserved the award. Alas, I am up against a deadline from a college secretary who needs my handout masters for copying, and we all know that making secretaries annoyed is very bad form. Instead, I shall aim for a few tantalising adjectives and let you enjoy discovering some new, fabulous blogs! Read the rest of this entry »
7 August 2008 at 17:42 (ADD/ADHD, Advocacy, Attribution Errors, Autism/Asperger's, College/University, Communication, Community, Developmental disabilities, Family, Learning Disabilities, Love & Acceptance, OMG, Parenting, Work / Employment)
The Kid recently took the ACT test, which like the SAT, is frequently used by colleges to determine scholastic abilities, and in his case helped place him for which college writing class he needed. He had to ask his sister what the test was like, and her impressions about its difficulty level. I could not personally provide any opinions, because I had never taken the ACT or SAT.
I never took them because no one thought I would go to college.
They made massive assumptions about my abilities and my future. So here’s what happened, and something to think about. I welcome you to please post comments, and more links to other positive blogs and sites.
My grades in secondary school grew worse over the years, and I had to re-take a semester in one class (English of all things, which in later years proved to be ironic when I became a freelance writer, with hundreds of items in print).
By this time in my life, my parents had divorced. My dad lived in another state, and was even more of a non-player in my life. Alas, my mother had spent years futilely trying to make me more “normal”, from requiring me to learn right-handed penmanship, enrolling me in a “charm school” at the local Sears & Roebucks to improve my feminine graces, and so on. But as the years wore on, my faults (problems) became more and more apparent. She no longer described me as “very bright”, but was quick to list all my failures and describe them in damning detail, until I was ready to vomit or pass out from the stress (though I never did, even though either would have been a relief).
By 9th grade it was apparent to all that I was not gifted scholastically, and the general consensus was that I was lazy, stupid at math, not trying hard enough, and acting up just to make her life difficult. When she was drunk, my failures and interests and personality traits would be compared to her ex-husband’s, “you’re just like your father, the bastard”. Even as much of a socially-clueless 14 year old that I was, I knew that these kinds of comments were untrue and inappropriate, and the problem was with her attitudes and her drinking. But they still hurt, terribly.
I would not be diagnosed with ADHD, Auditory Processing Disorder, and Prosopagnosia until I was in my 40’s. Such diagnosis hardly existed in those days; certainly my difficulties were not considered to be due to anything but my own personal failings.
No way, my family and school officials decided, could I be college material. I could not keep track of my assignments, I still struggled to learn and remember my multiplication facts into 8th grade, and I flunked or barely passed classes.
Given my social difficulties and subsequent lack of dating, and even my utter lack of domestic abilities (mom warned me off taking a sewing class because doing so would “ruin my GPA” – grade point average), I was obviously not highly marriageable. This was the 1970s, and most people still thought along those lines — an astonishing number of girls went to college to “get their MRS”.
The goal then was to get me some kind of minimal trade training, so I would, as she fiercely reminded me many times, not be a burden on the family. It was made plain to me that once I graduated high school, and then later turned 18, I was to be out on my own. I should not expect financial assistance from her.
So I was enrolled in typing, which was a miserable experience beyond the whole ordinary ordeal of learning to type on manual typewriters. The room was a cacophony of noise. The instructor was adamant about constant attention to task, proper posture, and graded with the intent on us producing perfection — as soon as a student produced a typographical error, then the score was made. (Additionally, the students’ pages were held up to the light against her perfect copies to check centering and spacing). There were many days when I would produce an entire page that was otherwise perfect but for a typo in the second line, and my grade would be an F because I had such a low word-count. Given my problems with developing manual speed, tracking text (near-point copying), attention, and transposing letters and numbers, I struggled to get a C grade.
But the clerical work that was deemed best for me also required taking bookkeeping. Not surprisingly, this was also a very difficult class for me. My aptitudes and interests were not really taken into consideration, because after all, even if writing and science and art were what I liked best, I had not done well in those classes, now had I? Besides, clerical work was what my mother knew, so like many parents she expected me to follow occupational suit.
Unlike many such students, my story has a relatively happy ending. I did manage to graduate high school, to everyone’s relief. A year later, I even enrolled in an evening class at the local community college. College classes were not easy, partly from my intrinsic difficulties, partly from not having the necessary study skills, and partly from not having a solid academic background.
But the glory of the American system is that such colleges provide opportunities for adults of all ages to acquire the these things, and to gain higher education. I worked hard, and slowly figuring out how I learned, which was not always in the ways that others thought I should study. Sometimes I had to drop a class and re-try it later on, to finish it successfully. Later on in my 40’s I was to also get some of my issues diagnosed.
I now have a Master’s of Science. I teach college students. No one would have expected this based upon my previous performance. (Employers who place near-complete trust in Behavioral-Based Interviewing, please note!) And this point, amongst all the others about the perils of attribution errors, and learning disabilities, and dysfunctional families, this point is crucial:
A child’s future abilities cannot always be predicted,
when based upon their current abilities.
Many parents of children who have developmental disorders worry that their children will never be able to attend school, or finish school, or go on to college, or hold a job, or live on their own, or be loved by a partner, or have a family, or talk, or be potty-trained, or any number of milestones. Just because the child cannot do the same things that their age peers can do, or are expected to do.
This is one of the biggest points of contention or discussion between the “autism community” (parents of autistic children) and the “autistic community” (children, teens and adults who are autistic, and many of whom are parents as well). Even beyond the farcical assumptions that either community is monolithic with regards to attitudes and knowledge and politics et cetera, there are inherent issues that need to be mutually addressed.
One of the best resources for the autism communities are the autistic communities. If parents go around just talking to other parents, especially those other parents who are consumed by the “Terrible Tragedy and Selfless Suffering Families” world-views, they may fall prey to this easy assumption: If my child can’t do it now, he’ll never be able to do it, and our lives will be ruined.
Sure, not everyone takes it to that extreme. Sure, there are a few children who do not achieve many of those life-goals. But those lack of achievements does NOT automatically mean that their lives are ruined, or their families’ lives are ruined. They do NOT automatically mean that people cannot live relatively happy, healthy, and productive lives.
Please do NOT assume that not being able to use speech as a reliable means of communication is the same as not being able to think, or not being able to communicate, or not having anything to communicate.
Please do not assume that because a child does not learn in a traditional manner that they are learning “the wrong way”, or that they cannot learn at all, or that they must be taught “remedial learning lessons”.
Please do know that even when children have problems, and are slower to acquire skills, they are not doomed.
Please do not give up on them.
“Don’t talk to me like I’m an idiot.”
~First words (at age 35) of an autistic man [quote source]
I welcome you to please post comments, and more links to other positive blogs and sites. Kindly see the newly-updated “NOTES TO COMMENTERS” box in the top of the left sidebar for important information. Read the rest of this entry »
Elizabeth McClung of the Screw Bronze! blog.
This beebalm flower struck me as being kinda goth-like in form, so I spiffed it up for you, because more is more. Thinking of ye, gal, take care!
A horrifying news story: a little boy in Florida kindergarten class was publicly humiliated and ostracized by his classmates, at the urging of their teacher.
After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.
By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.
There are so many ways to mistreat those who ought to belong somewhere. These means of intolerance, of expressing prejudice, range from the most passive to the most active. But even the passive ones are cruel when they are intended to be exclusionary. The outright active ones are the most vile.
You can be Read the rest of this entry »
Look at all those honeybees, buzzing around the hive! One of them is named Kathleen. (Can you tell them apart? I sure can’t — they’re all sisters.) So where’s Kathleen? “Yoo-hoo! Which one of you is Kathleen?”
“I am Kathleen!”
“I am Kathleen!”
“I am Kathleen!”
“I am Kathleen!”
Due to scholastic issues, I am late making this post. If you’ve not already heard, a blogger, Kathleen Seidel of the Neurodiversity.com weblog, was recently served with a subpoena by a lawyer in a current case. Kathleen has long blogged about the lack of scientific credibility of the vaccines-cause-autism idea, and the court case deals with such. As a citizen-journalist, Kathleen has commented upon this case and others like it, and her posts are copiously annotated with the supporting references from public domain documents. Other bloggers with legal backgrounds have commented that this kind of legal action seems to fall into the category of a “SLAPP”, Strategic Lawsuit Against Public Participation:
This form of litigation is frequently filed by organizations or individuals to intimidate and silence critics or opponents by burdening them with the cost of a legal defense so that they abandon their criticism or opposition.
Walter Olson of the Overlawyered blog calls the subpoena a “fishing expedition” and “intimidation”. Not only are the demands in the document incredibly broad and laboriously demanding, they are simply irrelevant to the case. Kathleen asserts that she is not involved in the case, and she does not have any special information relevant to the case.
As she stated in her reply (a “motion to quash”),
9. The subpoena commands production of “all documents pertaining to the setup, financing, running, research, maintaining the website http://www.neurodiversity.com” – including but not limited to material mentioning the plaintiffs – and the names of all persons “helping, paying or facilitating in any fashion” my endeavors. The subpoena demands bank statements, cancelled checks, donation records, tax returns, Freedom of Information Act requests, LexisNexis® and PACER usage records. The subpoena demands copies of all of my communications concerning any issue which is included on my website, including communications with representatives of the federal government, the pharmaceutical industry, advocacy groups, non-governmental organizations, political action groups, profit or non-profit entities, journals, editorial boards, scientific boards, academic boards, medical licensing boards, any “religious groups (Muslim or otherwise), or individuals with religious affiliations,” and any other “concerned individuals.”…
15 … Plaintiffs and their counsel seek not only to rummage through records that they suspect pertain to themselves, but also through my family’s bank records, tax returns, autism-related medical and educational records, and every communication concerning all of the issues to which I have devoted my attention and energy in recent years.
This is an incredible amount of documentation. Who would even keep all of these kinds of records? Many sorts of library searches do not give you “receipts”. And, as originally cited in the subpoena, what sort of search engine is “Lexus Nexus”, an automotive dealership? They probably mean LexisNexis(R), as Kathleen properly refers to it. (Spelling error or Freudian Slip?) And what’s with the “religious groups (Muslim or otherwise)”? Her religious affiliations (or lack thereof) have no bearing on the lawsuit.
The subpoena itself lists in those requested documents, “written or verbal communications” between her and a very, very long list of people or groups, which reading through is quite quickly apparent simply her blogroll, meaning all the 100+ blogs that she has links to on her sidebar. Mine is one of that large number, probably because my blog is listed in the Autism Hub feed. Mind you, I have never even mentioned anything about this particular court case on my blog.
So, disclosures: I have no special information about this court case, and I don’t even know any of the people involved. I don’t even know Kathleen personally, and have never met her. I do not work for her or for Neurodiversity.com, and have never even been to New Hampshire. I’ve probably made a few comments on her blog, as I’ve made comments on all sorts of blogs across the World Wide Web, but her blog is not listed on my blogroll. I do have a family member diagnosed with an ASD. I work in school settings with students who have various educational needs, including ASDs. I do not work for a law company, for a pharmaceutical company, or for a medical company.
Asking Kathleen for the least crumb of communication between herself and the numbers of people mentioned simply because they are on her blogroll is absolutly nutz. Can you imagine how many endless pages of paper all those requested documents would be? (What if you printed out every e-mail you had ever sent or received? Do you keep every e-mail you have ever sent or received? Neither do I.)
The responses to this action in the blogosphere have been incredible; big names like Pharyngula, Orac, and Steven Novella have taken time to comment upon action. Liz from I Speak of Dreams is keeping a running list. I too think the legal action is absurd.
One bee from the hive stops to turn over. Instead of being able to look at the viewer, she is displaying her underside, and we have a great shot of a bee’s ventral abdomen, essentially her rear end. Yeah, check out THAT waggle dance, folks.
There’s something about the intersection of the loss of a child and thoughtlessness that produces a dreadful lot of dreadful platitudes. But your child doesn’t even have to die — finding out that your child has an incurable disease or disabling condition can result in more horrible platitudes.
Some people will protest that, “Well, they mean well, so it’s really okay.” No. When someone says something cruel, or does something rude to another person, their “good intentions” don’t really amount to a hill of beans. Even using treacly god-talk doesn’t sugar-coat the insensitive words enough to make them palatable.
Finding out that you will have to learn how to do many things differently due to chronic illness or major disability involves some initial sense of loss for expectations of how life would be. But the situation is not analogous to having a child die. The parents have not “lost a normal child”. The child is not dead, but very much alive, and still loved. Furthermore, the child would not be “better off dead”.
Sometimes people pull out the platitudes because they want to “make things better”. But a few saccharine words is not going to help. The death of a child cannot be healed by the verbal equivalent of a bandage on a cut finger. When at a loss for words at the magnitude of someone’s grief, it’s okay to be honest and share that, “Oh, I’m SO sorry. I hardly know what to say.” And if you can’t think of anything further, then share a hug if these are hugging people.
After the initial shock, share memories of the child with the grieving parents, rather than trying to make the social “problem” go away by ignoring it. Don’t suddenly drop the parents of disabled children from social groups, as though the family has contracted something horribly contagious.
But please, don’t pull out the insensitive platitudes:
Don’t be so selfish; you still have your other child.
You can always have another one.
Children are not interchangeable, replaceable units, like dolls.
Having another child won’t somehow magically make a family “complete” — the family isn’t defined by the number of members, but by who they are. There will always be a sense of loss for the missing person.
God wanted the child with him.
What kind of deity is so selfish as to deprive parents of their child? What, God couldn’t have enjoyed the child’s presence more by watching it grow up with its family?
God’s punishing you for putting your desire to have children ahead of Him.
Make that selfish and vengeful. Where’s the “loving deity”?
It was God’s Will.
And you know this because … how?
Your child’s in a better place.
How is an early death better than a full life?
God never gives people more than they can handle.
Nonsense; there are plenty of people who have cracked under the strain of grief, falling to depression or sometimes even violence.
Everything happens for a reason.
True, there are causes for everything. True, people can create extra purpose in their lives in reaction to events that happen to them. But I cannot accept that a deity required a child had to die for its parents’ moral improvement.
Think of the money you’ll save; having one kid is cheaper than twins.
Oh for ~~ one doesn’t have children for budgetary reasons!
Guess what — I’m pregnant! It’s like God’s making up for the baby you lost.
Let’s blame the maternity hormones for that incredibly tactless, thoughtless remark, and hope that she has a full recovery.
Haven’t you gotten over that yet? You just need to pray more / work harder / think about others.
Grieving for the death of a baby or child is not something over and done in a few days. Really, one grieves for the loss of a loved one the rest of their life — it’s just that the grief becomes tolerable, and the memories more wistful than painful.
You’re lucky the baby died early — it could have been handicapped.
Being disabled is not worse than death.
It’s for the best — she / he would have suffered from being, ‘you-know’ … Retarded. Crippled. Deaf. Blind. Palsied. (et cetera)
Being disabled is not a life sentence of suffering.
Well at least you have your other, healthy child(ren). You could even try again.
If I have a disabled child, I am not about to discard them, nor decide that I have not succeeded in getting the “perfect” child that I deserve.
God gave you a special child to teach you something.
We all learn things from our children, and many parents find they learn unexpected things from children who have different needs. But such a platitude smacks of begin given a special-needs child as a prescription or punishment for a moral failing.
It’s just as well; so many sick preemies survive nowadays, and there’s too many special-needs kids being a burden on society.
The social burden is not special-needs kids.
The social burden is people who feel they have some special hotline to heaven. The social burden is people who think that death and disability are divine punishment for sins. The social burden is people who can only see the disabled as those who are a useless waste of public resources. The social burden is people who imagine that a disabled person cannot have a happy, loving, productive or even [otherwise] healthy life.
The other day at the college I was waiting for an elevator (lift). It’s rather slow, but a sleet storm was heading in and I was especially achy. Just a few feet away was a bulletin board for a program the college runs, including a series of non-credit weekend classes for people with Down’s and other developmental or cognitive disabilities. One of the things thumbtacked to the board was a yellowing newspaper clipping. The photograph showed a young man busy in his kitchen, with his father standing nearby, watching him. The article began by mentioning how lucky the young man is because he has resources to help him learn to live independently, to get his own apartment, to get a job to support himself, and other important things.
He is lucky.
“Lucky” is one of those stock newspaper words that seems to be required in stories about disabled people. It’s right up there with “amazing”, “inspiring”, “challenged”, “journey” and a dozen other terms that I’m blanking on just from sheer nausea factor. (I’m sure you can think of several others.) I finished reading the story by the time the elevator moseyed up to the top floor. By the time I descended three levels, I had gathered up a fair bit of annoyance. Read the rest of this entry »
Last week I took two of our cats to the vet for their annual check-ups, including the Rabies, Feline Distemper, and Feline Leukemia vaccines. Some years ago we lost one of our cats to Feline Leukemia; the poor kitty died just a few months before the vaccine was available.
This Saturday past I reminded my gardening students that if they cannot remember when they last had a Tetanus booster, they they should go and get one, because a booster is recommended every ten years. The number of people to have survived Tetanus is vanishingly small; it’s pretty much a death sentence. It’s also easily prevented by a simple vaccine. Sure, your arm is a bit sore for a couple of days, but that beats dying an extremely painful and highly unnecessary death. As I reminded my students, “You get your pets vaccinated, you get your children vaccinated, so you should get yourself vaccinated!”
Except there are a few people who don’t want to get their children vaccinated. A drop in vaccinations means not only that some people get sick, but a drop in vaccinations also means a loss of “herd immunity”, meaning that most of the population is not immune, so there are enough people who can catch and then transmit the disease. When you make a decision to not immunise, you are not making a decision that affects just you and your children. You are a making a decision that affects everyone else in your community.
That is why we had recent epidemics of mumps and measles in the UK and the US, leading to hundreds of sick people, and some who were disabled or killed. Because I work with students in various schools, I get lots of exposure to viruses. I had not previous had a mumps vaccine or the disease, so during those epidemics I went and got the MMR. Now I’m protected against Mumps, Measles and Rubella (even though I had the other vaccines in ’63 and ’70, the combined vax helps boost my immunity). I also went through the Hepatitis B series that year.
So yes, I’m a big proponent of vaccinations.
And no, I do not subscribe to the hysteria generated by a few noisy, well-meaning but seriously-deluded or paranoid people who believe that there is a world-wide conspiracy Read the rest of this entry »
I love a good debunking! Bug Girl has an appropriately geeky and humorous Skeptic’s Circle #80, “The Valentine Edition” going on over at her blog. Go check it out!
It’s tough making a living, whether you’re finding a nursery for the young’uns, molting, trying to get a mate, or avoiding ending up as someone’s dinner. Part of the fascination with the invertebrates is just how many “weird” and surprising ways there are to solve the basic problems of life. Plus, we also like them just because they’re so damn gorgeous! This batch of posts has some terrific photography.
Ants may be industrious, but by all accounts they may be easily outwitted. On Not Exactly Rocket Science, Ed Yong has the great tale of “Evolutionary arms race turns ants into babysitters for Alcon blue butterflies”, giving the story of how the larvae of the beautiful Alcon Blue butterfly are really just a bunch of slackers — these brood parasites make ants fawn over them at the expense of the ants’ own larvae. Meanwhile, GrrlScientist is Living the Scientific Life where she describes, “Berry Butts: Parasitized Black Ants Resemble Red Berries”. More weird parasitism: “an amazing example of a parasite that causes its host to resemble a luscious red berry — all so the parasite’s eggs are passed onto birds, the next step in the parasite’s life cycle.” The ants continue their march (one by one) across the Interwebs, and at his Myrmecos Blog, Alex describes how we can find “Ants from a Kilometer Up” by using Google Earth to find their mounds. (Gee, if you make it that easy, won’t the grad students waste their time doing silly things like catching up on sleep?)
So what do Superman, strippers and training wheels have to do with arthropods? Read the rest of this entry »
Wow, lotsa busy stuff happening over here!
Getting the Carnival of the Spineless knocked together (it’ll be out soon; ran into a technical glitch).
Meanwhile, if you’re aching for some good strategies or inspiration, go visit the January Pain-Blog Carnival at “How to Cope with Pain” blog. (This one happens during the last week of each month; the next one deals with pain & Valentine’s Day.)
Podblack Cat has put up the “The 79th Skeptic’s Circle – Rollin With Teh Lol-ling”. What a clever cat; she has linked to special LOLCat pix for each contributor! Too funny, plus, lots of great skeptical blogging.
And if you still have time to waste, go check out the Planarity game (hat-tip to the Kid). Starts out nice and easy, letting you figure out the untangling algorithms, and progresses reasonably. I got up to level 16, but found that much of anything past level 10 is really way too many nodes to make distinguishing or handling easy, so I just refresh at 10.
The next Circus of the Spineless will be hosted HERE at the end of the month! Deadline for submissions for CotS #29 is the 29th.
The Circus of the Spineless is “A monthly celebration of Insects, Arachnids, Molluscs, Crustaceans, Worms and most anything else that wiggles”. So if you have a story, and especially if you have pictures, please join in the fun!
So far I have a whopping 2 submissions (I know, I know, “salvation by deadline” and all that), and they are both about ants. Are the rest of you invertebrate fanciers going to let the Formicidae rule all? (You know how those social insects are…)
You can post your links here in the comments, or via the CotS page linked above.
Sn*w day for the kids today. Meanwhile, college classes have started, and colleges rarely shut down no matter what the weather. That means I’m temporarily snowed under coming and going. So bop on over to The Skeptical Surfer’s blog for very humorous Skeptics’ Circle #78: The “Still High From The Chelation” Edition. (And remember, don’t believe everything you read ::wink:: )
Just a couple of quickies here while I’m busy preparing for some new classes.
Firstly, the 77th edition of the Skeptic’s Circle is up at WhiteCoat Underground, with a rather humorous post by PalMD, “The Overmedicalized Edition“. I love reading these circus posts because it’s a good way to find great new blogs!
Secondly, there’s the “December Pain-Blog Carnival” at the How to Cope With Pain blog, also run by a physician blogger.
And for the “bread” part of this post, here’s a recipe that was a big hit last week, home-made waffles! Yes, it’s a bit more work than buying the frozen sort and throwing them into the toaster, but I guarantee that these tasted a helluva lot better than the frozen sort. The guys couldn’t even tell they were gluten-free, THAT’S how good they were! (All the frozen GF waffles I’ve ever tried were as dry as Styrofoam.)
Because I’m an ADHD-forgetful sort of cook and clumsy and somewhat arthritic, this recipe comes with assorted tips, including some in case you’re not used to making home-made waffles. Read through directions for tips before cooking.
WONDERFUL WAFFLES (GLUTEN-FREE)
Special equipment: waffle iron, mixer to whip egg whites, and if you have one, a blender and a towel. If you don’t have a blender you can use the mixer, BUT beat the egg whites before mixing the other ingredients, so the beaters are clean and dry for the whites.
4 large eggs, separated
1 ½ cups milk (360 ml)
¼ cup oil (60 ml)
1 1/2 cups GF flour mix (about 150 g, depending upon blend)
5 teaspoons baking powder (25 ml)
1 tablespoon sugar (15 ml)
1/2 teaspoon salt (2 ml)
You can also sprinkle some cinnamon into the waffle batter, which is nice if you are topping them with apple stuff. Some people like to add a teaspoon (5 ml) of vanilla extract; I keep forgetting to do this. I’ve also tried almond extract, which made the waffles taste like holiday cookies, but hubby prefered traditional waffles.
TIP: if you want to add blueberries to your batter, use either fresh ones or still-frozen berries — thawed blueberries will “bleed” and turn the batter a pale teal-green color; YCIHIKT. They still taste good, but …
I’m quite flattered to have received the “Roar for Powerful Words” Award from abfh. This award, initiated by the Shameless Lions Writing Circle, is to “encourage and celebrate good, powerful writing on the Internet / blogosphere”. It is given to “those people who have blogs we love, can’t live without, where we think the writing is good and powerful.” Each person giving the award then gets to select “three things they believe are necessary to make writing good and powerful” and nominate five deserving people. You’ll need to visit abfh’s blog, Whose Planet Is It Anyway? to read her own descriptions of good and powerful writing, and to learn of her other nominees.
For my own qualifiers, I believe that good, powerful writing originates from someone who is authentic to their own experiences, is clear on their own vision for what the world should be like, and is both thoughtful and articulate in expressing these things.
All of these bloggers have ATTITUDE. There’s not a “compliant”, unduly self-abnegating wallflower amongst them, bless their wicked little souls. They have words and they know how to use them, both the four-letter kind and the four-syllable kind. A thoroughly diverse group of bloggers, each has a different perspective on their particular interests. If you’re not familiar with them, I suggest reading a couple weeks’ worth of posts, to get a good feel for the subjects covered (none of these people are shy about posting a rant now and then, but rants don’t a blog make).
In alphabetical order (because otherwise trying to organise this bunch would prolly be like herding cats):
Cilla Sluga at Big Noise
Joel Smith at NTs Are Weird
Shiva at Biodiverse Resistance
You folks ROCK!
Description: a photo of part of my desktop, a faux-oak surface with several items lined up along the back edge, (left to right) a clear green plastic desk lamp; a piece of mirror glass on the desk holding the quartet of a green-swirled globe of art glass from Scotland, a faceted crystal, and a small green beaded keepsake tin, and a purple glass tray with green beach glass from the North sea and pieces of granite from Loch Ness; a green glass bottle; several clear green plastic desk accessories including a stapler, tape dispenser, page holder, a tool caddy with green scissors and pens and suchlike, and in front of these is an electric mug-warmer with an old mug bearing the inscription, “SAVE THE EARTH (IT’S THE ONLY PLANET WITH CHOCOLATE)”. The photo has the post title added in the blank area near the top that reads, “A FEW OF OUR FAVORITE THINGS”.
As you may have guessed, shiny or clear green objects are some of my favorite things. This photo doesn’t even show the prismatic green tissue box, photo frame, green fidget-widgits, or Rosie’s habitat with the green lid. Having these things on my desk to use and admire makes me happy. (And that is the mug-warmer I mentioned in my own post on favorite things.)
We all have a number of little things that not only delight us in small ways, but also make life just so much more pleasant, and even help reduce our stress loads. These tend to fall into three categories: technology that enables us to do things, creature comforts, and human interaction. Got your cuppa? Cats and dogs settled down? Then let’s begin! Read the rest of this entry »
Sometimes after a child gets a diagnosis (or diagnoses) the parents begin to realise many of the same issues from their own childhoods, and on through adulthood. In our family it took the opposite route. It took years to really see the aspie qualities of my kid, partly from unfamiliarity, and partly because in a geeky family like ours … most of those qualities are “normal”. Not until the teen years did the social issues, the APD issues, and ADHD-related educational issues really become unavoidable. The tics went away after several years, as happens sometimes. But I think there was less “denial” as there was unawareness and a sense of internal normalcy: “this is just the way we are”.
A very nice article by Benedict Carey illustrates this: Your Child’s Disorder May Be Yours, Too
Mr. Schwarz, a software developer in Framingham, Mass., found in his son’s diagnosis a new language to understand his own life. His sensitivities when growing up to loud noises and bright light, his own diffidence through school, his parents’ and grandparents’ special intellectual skills — all echoed through his and Jeremy’s behavior, like some ancient rhythm.
His son’s diagnosis, Mr. Schwarz said, “provided a frame in which a whole bunch of seemingly unrelated aspects of my own life growing up fit together for the first time.”
It can alter the present, too, if parent and child have enough common ground. Mr. Schwarz, the software developer in Framingham, said he became in some ways like a translator for his son, who’s now 16.
“I think there are a lot of parents of kids with these diagnoses who have at least a little bit of the traits their kids have,” Mr. Schwarz said. “But because of the stigma this society places on anything associated with disability, they’re inhibited from embracing that part of themselves and fully leveraging it to help their kids.”
Our understanding of diagnoses mean changes over time, and we leave or entirely skip that stage of grieving over not having a promised “normal” child, or possibly even viewing the issues as horrible things that must be cured at all costs. Instead, we find that our children are different rather than damaged, and that we ourselves are oft times different as well. We move from grief to acceptance, and realise that acceptance is not the same thing as resignation.
In fact, we do not have children with broken wings, but we are in many ways flocks of different kinds of birds, not unlike the diversity of finches that Darwin found in the Galápagos, all adapted for slightly different niches. After all, we don’t all need to be penguins attired in identical tuxedos.
David recently posted the following conundrum in an essay:
How do you best convey experiences of living with a disability that are so alien to so many people? Where do you start? How do you convey challenges that people have never even considered?
This insightful — and sometimes “incite-ful” post, because it made me thoroughly annoyed on people’s behalf — reminded me of a handout I’d found while cleaning out old files. One of many available to university tutors, it was yet another authorless 12-point gem. (If someone does know the source, kindly let me know!)
The page refers to the assumptions we mentally trip over when working with people from other national, religious or ethnic cultures. I rather doubt that the author(s) considered how broad the cultural spectrum can be. One doesn’t readily think of the various Deaf cultures, but of course, there they are. I’m almost certain that they were not thinking of disabled people. Good heavens, even people studying various aspects of disability politics and history can’t agree on whether there is a “disability culture” or what it’s comprised of. Given the vast differences, definitions quickly break down into things like “autistic subculture” and debates thereof.
But nonetheless, this is still a spiffy list, so I’m sharing it with you all to mull over and run off with for your own purposes. This is the delight of blogging: cross-pollinating one’s brain with all sorts of novel combinations of ideas!
1. What seems to be logical, sensible, important, and reasonable to a person in one culture may seem stupid, irrational, and unimportant to an outsider.
2. Feelings of apprehension, loneliness, and/or lack of confidence are common when visiting another culture.
3. When people talk about other cultures, they tend to describe the differences and not the similarities.
4. Differences between cultures generally are seen as threatening and described in negative terms.
5. Personal observations and reports of other cultures should be regarded with a great deal of skepticism.
6. One should make up one’s own mind about another culture and not rely on the reports and experiences of others.
7. It requires experience as well as study to understand the many subtleties of another culture.
8. Understanding another culture is a continues and not a discrete process.
9. Stereotyping probably is inevitable in the absence of frequent contact or study.
10. The feeling which people have for their own language is not often evidenct until they encounter another language.
11. People often feel that their own language is far superior to other languages.
12. It probably is necessary to know the language of foreign culture to understand the culture in depth.