Posts Tagged ‘Marc Gold’

photo credit: Swamibu

2006

Aaron, my son with the labels of autism and developmental disabilities, had a doctor’s appointment so I brought him late to his adult day program.

A Visit to the Jungle—Jungle Jim’s that is.

Thanks to cell phones, I connected with his group on their community outing at Jungle Jim’s. This is a mega grocery store with a jungle theme: animated monkeys, giraffes, and other animals spread throughout the store. It’s a pretty neat place and features foods from around the world.

Like most people, Aaron and I got a grocery cart when we entered the store.

Adults with Disabilities in Large Group

We found the group–immediately.

Coming down the meat aisle, two women in their 30s were holding hands walking in front of three people in wheelchairs. Both woman had Down syndrome were about 5’6” and weighed about 200 pounds. Another man (about 50) was holding hands with a female staff person. The second staff person was pushing one of the people in wheelchairs. They did not have any shopping cart.

Gosh, I wonder how we found them so easily?

When one of the staff people saw Aaron pushing a grocery cart, she said she was surprised he had those skills and could tolerate the noise and confusion of a grocery. I assured her Aaron was fine and in fact, since he was in second grade, grocery shopping was part of his functional curriculum (click here).

Plus, when he lived at home, he went with me to the store 4-5 times a week. I expected Aaron to do well in the grocery and even expected him to participate in the shopping and make choices for the items he liked. Aaron actually met some of his former classmates at our community store (click here).

The staff person didn’t really pay attention to what I was saying. Since she was the professional in charge, and I am clearly just the mother, she politely said I could leave and she would watch Aaron (along with the other six people).

To her surprise, I smiled at her and said there was NO WAY I was going to leave. (What I actually said was a lot nicer–what I was thinking was actually not a lot nicer.)

Preschoolers

A group of preschoolers were also visiting Jungle Jim’s that day. The teacher had prearranged an instructional tour. A store employee, dressed like a jungle safari guide, was explaining how cheese comes in huge round blocks from many different countries. Even with the guide in her camouflage pants and a netted hard hat, and the teacher saying “Who can tell me what shape that is?” all the kids were gawking at our group.

Our two aides, of course, just kept herding the group of adults with disabilities down the aisle. They talked to each other about the general prejudice of our society toward people who are different, and young children who just didn’t know any better. After all, they are Christian women who care about the “least of God’s children” and they are the enlightened ones earning their crown in Heaven.

Purpose of the Grocery Trip

Unlike the preschoolers who were making the trip to the grocery an educational experience, I asked one of the aides what our group was buying at the grocery. She shrugged her shoulders and said, “Oh, it is the end of the month, we are out of funds–so we are just looking around, enjoying the air conditioning.”

Shock in Aisle 4

I was with Aaron and our group for about 15 minutes and I was on the edge of hysteria. I literally had to do calming breaths. I felt like I was in a time warp from the ‘80s. I kept thinking of the years Aaron’s occupational therapist, speech/language pathologist, physical therapist, teachers and instructional assistants taught Aaron to plan his purchases, buy items, make choices, use his picture communication book, use his wallet, push the cart without hitting anyone, maneuver around kiosks and displays set up in the middle of an aisle…. Aaron even worked at a grocery store, with his job coach, stocking shelves as part of his work transition plan.

Normalization

I also thought about everything I knew about normalization–to go to the store in small groups (no more than two) and blend into the population. To have the skills and behaviors of a consumer so you were a valued customer and respected member of the community.

I remembered Alison Ford’s presentation about, “There is so much more at the grocery store” and the Syracuse Functional Curriculum. And Marc Gold, Lou Brown and Sharon Freagon’s slides using the grocery store for a teaching environment because it was a community environment that would be used for a lifetime–multiple trials over multiple years.

Inclusion and the Jungle

One of the lessons of nature is that for animals to survive, they need to blend in, or be camouflaged into the environment. That is why polar bears are white, and alligators look like logs floating in the river. It is why the female cardinal, who carries the young, is a dull brown and her male partner is bright red to attract the attention of predators.

The history of man also tells us about the power of in and out groups. We segregate criminals in orange jumpsuits so they stand out and everyone knows there is danger. The Nazi’s forced the Jews to wear Stars of David arm bands to clearly stigmatize and identify their enemies. Police uniforms identify people who we can ask for help.

The history of people with disabilities also includes the stigma and isolation of people as being so different, so dangerous that parents would point to strangers and urge their children away.

I talk about some of these stigmas in my story about America the Beautiful (click here).

Because Aaron does not communicate like other people. Because Aaron has some bizarre behaviors. Because it takes people a while to get to know him. Because of his labels… we make sure Aaron is well groomed, wears stylish clothes and can survive by blending into existing groups.

We practice the principles of normalization and inclusion everywhere we go. We work hard to help Aaron be seen as a contributing member of the community, a valued member of a family, a friend, a loving uncle.

Like the jungle, “the survival of the fittest” belongs to those who can camouflage themselves into the natural world, or in disability-speak, be included in the community.

Tiger Mom

Obviously, none of these aides had read about this, or anything else. In fact, these loving caring aides who work for minimum wage do the job as a labor of love. They are not trying to stigmatize Aaron and his group–they just don’t know any better. They are not trying to alienate and waste the people’s time and let their skills deteriorate—they really, really, really just haven’t been trained.

So, of course, Tiger Mom took over.

That day I decided to stay and try to teach some skills. I have trained parents and teachers, I have a lifetime with Aaron so Tiger Mom went into action.

I figured the normalization lesson would have to wait because there was no way our group was ever going to blend in. (How could two aides handle seven people with significant disabilities, three who used wheelchairs?) We also did not have enough staff to divide up in small groups and spread out in the store.

Let’s Buy Something?

So I suggested, “Let’s buy something, and I will treat. What could we make for a snack? Or what do you need?” (MAKING CHOICES—giving dignity to the people.)

One person suggested we make smoothies. Great, smoothies! (That is AGE-APPROPRIATE. People of all ages like smoothies. It was hot outside so it was appropriate for the time of year.) Smoothies it is!

Task Analysis

I ask the group what ingredients we needed to make the smoothies. Each of the seven people had a particular item to find on the shelf and put in the cart Aaron was pushing (FUNCTIONAL SKILL: IF THEY DIDN’T GET THE ITEM, SOMEONE ELSE WOULD HAVE HAD TO GET IT.)

Aaron pushing the cart was a balancing and behavioral technique to keep Aaron on task and keep him from running off down the aisle. It also put Aaron in a valued position because he was needed for each item. It also required each of the people to (SOCIALLY INTERACT) with Aaron.

Teaching “Learned Helplessness”

The people with disabilities all got into it. But the kind, but totally clueless aide was doing everything for them–even putting the item in the cart for them. And, obnoxious me, I would return the item to the person, put it in their hands and ask them to put the item in the cart. (LEARNED HELPLESSNESS.) Geesh!

Since Aaron was pushing the cart, he was like the leader of the safari. He did great, but I swear, the others had either lost their skills or hadn’t had much opportunity to learn about PARTIAL PARTICIPATION and practice being an active participant in the shopping environment.

We had a hard time finding the frozen juices, but guess what? Near the ceiling, there was a big sign that said “JUICE” – which I of course, pointed out so the group could READING CONTEXT CLUES it.

The aides–actually, I don’t know what the aides were thinking—they looked at me like I was nuts to point out a sign to these people who they knew couldn’t read.

CONCLUSION

The safari ends with checkout and the group being loaded into the vans.

I let Aaron leave with the group. I said goodbye and I hoped they enjoyed their smoothies, and then… I sat in my car and cried for 20 minutes and was depressed for the next week.

All of our fight for inclusion in a regular school, fight for a functional community-based curriculum, all the research and knowledge we have acquired for the last 30 years in special education–and here is Aaron in the middle of what felt like a freak show.

Even if I tried to feel some redemption about the functional shopping experience with the outcome of them making a smoothie, and even if I tried to ignore my overstepping boundaries and staying, “Just a mother.” The low expectations (click here) and lack of skills felt hopeless. All the skills that Aaron had, and now was losing.

I haven’t resolved this. The aides were good people doing a tough job. Imagine lugging 7 adults in and out of vans, and not having the funds to buy anything on a trip to the grocery?…. but my heart just breaks for Aaron. His dream plan, years and years of work–and it is like it never happened.

Children have value and hope. The adult world has no mandates, no IEPs or due process. Where are the people who certify these programs? How can these good aides have so little support and resources?

Thanks for listening, I know you don’t have the answers either. I stopped in Aaron’s day program again yesterday and the group was making lady bugs on green construction paper leaves from a pre-school activity book. Geesh!

Deep breathe, in-out-in-out.

Lady bugs are supposed to be good luck, right?

I feel like I should end with a joke or something to lighten this up, but I feel betrayed by the paid “Professionals” in our county who know better. Where are they?

Am I really supposed to just “feel grateful” that Ohio has any programs at all, and Aaron’s developmental twin in Tennessee and South Carolina are just sitting at home doing nothing?

Of course, last year was worse and at least now, Aaron is out of the crowded back room with no windows at the sheltered workshop.

He is surrounded by kind people who care about him. It could be worse. But wow, it certainly could be better.

Keep Climbing: Onward and Upward

Mary

Please chime in:

What would you have done? Would you just watch? Would you just leave Aaron and go? Would you go back to the grocery for a bottle of scotch? Any suggestions? In this jungle, what would a “normal” shopping trip look like for the people with severe disabilities? What message do you think the preschoolers got? What would be better?

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Try Another Way

When President Obama signs Rosa’s Law, it is going to change some of the language and cultural issues about using the words, “retarded” and “mental retardation.”

In the previous post we talked about the Google keywords that pop up with the search “retarded” (click here).
Today I want to spend a couple minutes talking about a change in one of the historical definitions of mental retardation in 1973 and then share some links to definitions you might find on Google TODAY in 2010.

1973: Marc Gold redefines the definition of Mental Retardation

Marc Gold brought his revolutionary concept of “Try Another Way” (click here for more information)to Ohio in the ’70s. At their annual convention in 1982, TASH (formerly called The Association for Persons with Severe Handicaps) made a commemorative tape they presented to Marc just before he died. Pat Merchant, Debbie Wetzel, Mary Ann Roncker, me and other parents were filmed sitting in the front row crying our eyes out. Marc was a paradigm pioneer in education and supported employment. He was one of those feisty, remarkable, “Linchpin” types who changed the lives of people with intellectual disabilities and their families.

Marc believed everyone can learn if we can figure out how to teach them.

He rewrote the Definition of Mental Retardation (click here) and stressed OUR need to get better attitudes and skills. He also showed us people who had the label of mental retardation each had unique gifts and if we listen and observe, they will teach us how to teach them.

1973 Definition from American Association on Mental Deficiency: Mental retardation refers to significantly subaverage general intellectual functioning existing concurrently with deficits in adaptive behavior, and manifested during the developmental period.

Marc Gold’s definition: Mental retardation refers to a level of functioning which requires from society significantly above average training procedures and superior assets in adaptive behavior, manifested throughout life.

Marc’s definition created a major shift from individuals who have deficits, to the professionals having the deficits. This completely turned special education on its head. Now we had to look at what teaching strategies would be respectful and work.

2010: Other Definitions found on Google

When I typed “retarded” in the Google Search box (22,700,000 results) I was distressed to find most of the search results were for sites that made fun of people with the label of mental retardation. There were a couple sites which gave “definitions.” For instance, Wikipedia was ranked first and (click here) gave some traditional definitions.

But take a deep breath, grab some Tums and if you have the stomach, check out the definitions from the Urban Dictionary and Encyclopedia Dramatica.

Urban Dictionary

Urban Dictionary (click here for the complete list of 45 definitions):

term=retarded
retarded 2 sounds stupid dumb gay retard idiot lame annoying slow crazy dumbass moron idiotic tard ugly funny shit loser drunk fag ignorant ridiculous fat asshole fuck mental smart cool silly awesome bitch special fucktard ass crap emo moronic fool fucked up homo weird insane sex fail high boring bad fucking shitty douche homosexual.

1. retarded: 2072 up, 651 down (in the vote of readers, 2072 people thought this was a thumbs up definition)

An “unofficial” (not recognized by dictionaries) slang descriptor for a person/thing/action/object, etc., or a combination of, which is one or more of the following:

a waste of time, abandoned, abject, abominable, abortive, absurd, afraid, aimless, anxious, apprehenaive, arid, arrested, assailable, atomic, awful, baby, babyish, backward, bad, banal, barmy, barren, base, baseless, bastard, beastly, beggarly, behind, beside the question, blah, bland, bogus, bomb, bootless, boyish, brainless, bromidic, bummer, caitiffcapricious, careless, catchpenny, characterless, cheap, checked, cheesy, childish, childlike, clichéd, cloying, coarse, colorless, common, commonplace, confusing, contemptible, cotemptible, controvertible, conventional, cool, corn, cornball, corny, corrupt, counterproductive, cowering, cracked, crap, crappy, craven, crazy, crud, cruddy, daffy, daft, dastardly, dazed, dead, deadpan, deficient, degraded, degrading, dejected, delayed, delusive, dense, dense, deplorable, depraved, despicable, destitute, detestable, devoid, diffident, dim, diminutive, dippy, directionless, dirty, disgraceful, dishonest, dishonorable, dismayed, disposable, disreputable, dizzy, dodo, doltish, dopy, dotterel, down, downtrodden, drab, drifting, drudging, dull, dumb, empty, empty-headed, erratic, evanescent, everyday, evildoer, excessive, exhausted, expendable, expressionless, facetious, failed, failing, faint-hearted, fallacious, false, fanciful, fatuous, fawning, featherbrained, feeble, feebleminded, fickle, flaky, flashy, flat, flighty, flimsy, flip, flippant, fool, fool around, foolish, for grins, forlorn, fortuitous, foul, freaked out, freaky, frightened, frivolous, frothy, fruitless, futile, gagged up, garbage, garish, gay, giddy, girlish, glitzy, goalless, good-for-nothing, goofy, green, gross, groundless, groveling, grungy, gullible, gutless, hackneyed, half-baked, half-witted, hang dog, harebrained, heedless, ho hum, hokey, hokum, hollow, hopeless, humble, humbling, humdrum, humiliating, idiotic, idle, ignoble, ignominious, ignorant, ill-advised, ill-considered, illogical, imbecile, immaterial, immature, immobile, immoral, impassive, implausible, impracticable, impractical, improbable, inadequate, inane, inapplicable, inappreciable, incidental, inconceivable, incongruous, inconsequential, inconsiderable, incredible, indelicate, indiscreet, indiscriminate, ineffective, ineffectual, inept, inessential, inexpressive, infamous, infantile, inferior, inglorious, inscrutable, insensate, insignificant, insincere, insipid, insufficient, interminable, inutile, irksome, irrational nonsensical, irrelevant, irresolute, irresponsible, jejune, jittery, joking, joshing, junky, juvenile, kid stuff, kooky, lacking courage, lame, late, laughable, lemon, lifeless, light, light-minded, lily-livered, little, loathsome, loony, loser, lousy, low, low-born, lowly, lowly, low-ranking, ludicrous, mangy, meager, mean, meaningless, measly, mediocre, menial, mentally incompetent, meretricious, microscopic, mindless, minor, minute, indecisive, miscarried, miscreant, miserable, modest, momentary, monkey, monotonous, moronic, moth-eaten, naive, needless, negligible, nervous, niggling, nihil ad rem, no bargain, no dice, no good, no guts, no place, no-account, nonessential, nonsensical, not at issue, not serious, not to the purpose, nothing, nowhere, nugatory, hopeless, nuts, nutty, objectless, obscure, obtuse, odd, off offensive, old hat, old-fashioned, ordinary, otiose, outcast, paltry, panicky, pathetic, pedestrian, peripheral, petty, piddling, pitiable, pitiful, platitudinous, playful, plebeian, pointless, poker-faced, poor, potty, pre-kindergarten, preposterous, primitive, profitless, proletarian, prosaic, puerile, puny, purposeless, pusillanimous, random, rash, ratty, raunchy, recreant, removable, repetitious, result less, retiring, rinky-dink, rotten, rough, routine, rubbishy, run scared, sappy, scandalous, scanty, scared, scatterbrained, screwy, scrubby, scurvy, second-rate, seemly, senseless, sentimental, servile, severe, shabby, shallow, shameful, shiftless, shoddy, shopworn, shrinking, shtick, shy, silly, simple, simple-minded, skin-deep, sleazy, slight, slimy, slow, sluggish, small, small time, soft, sordid, sorry, sorry lot, spineless, sportive, squalid, square, stale, stale, stark, stereotyped, sterile, stiff, stock, stodgy, stolid, stray, stuffy, stupefied, stupid, submissive, subnormal, superficial, superfluous, tame, tatty, tawdry, tedious, terrible, the subject, the willies, thick, thickheaded, thin, thoughtless, threadbare, timid, timorous, tired, tiresome, tiring, tomfool, tongue-in-cheek, transparent, trashy, trifling, tripe, trite, trivial, trumpery, ugly, unassuming, unavailing, unbelievable, uncommunicative, unconvincing, uncouth, underdeveloped, underfoot, underprivileged, undevelopedundirected, undistinguished, unessential, unexciting, unexpressive, unfit, ungrounded, unguided, unimaginative, unimportant, unintelligent, unmanly, unnecessary, unneeded, unoriginal, unpersuasive, unplanned, unpredictable, unpretentious, unproductive, unprofitable, unreal, unreasonable, unrefined, unrelated, unsatisfactory, unsophisticated, noncommital, unsubstantial, unsuccessful, unthinking, unusable, unvaried, unworthy, uselessvacant, vacuous, vagrant, vaguevain, valueless, vanishing, vapid, vile, plebeian, volatile, vulgar, wackywandering, wanton, waste, watery, wayward, weak, wearisome, well-worn, whimsical, white elephant, wide of the mark, wide of the point, wishful, wishy-washy, witless, worthless, wretched, or yucky.
There are literally a thousand different uses for the slang version of “retarded” – (Quick note:) Usage-wise, it came before and set the precedence of the way we use “gay” in slang today – used correctly, they’re practically interchangable.

“That test was really gay!”
“Oh yeah, our chemistry teacher is being retarded.”

“Mary, stop being retarded! You’re so gay, grow up!”

“I thought it was a simple babysitting job, but I was wrong. Besides all the other stuff, I had to clean up after the retard, which was pretty retarded. To top it off, he set the carpet on fire, which I had to put out with the flame-retardent extinguisher. And after all of that, the parents only paid me $15. Babysitting is gay.”

There were 12 other definitions between these two. Here is number 14 which was different.

14. retarded: 174 up, 191 down (so the majority of voters don’t like the definition given in #14)

The most hateful and hurtful word in the English language.
Originally meaning having an intellectual disability, also known as mental retardation. For some reason people started using it to mean stupid or dumb. Mentally retarded people are anything but dumb. People with disabilities are for sure the most discriminated group of people. How many of you are against racism or sexism? But do you even think twice before you call someone “retarded”?

“Thats soooo retarded”.
Honestly? You have no idea.”

Another interesting thing about Urban Dictionary (hey I’m trying to show restraint here) is that each of the 45 definitions had an ad at the beginning: “Buy retarded mugs, tshirts and magnets.”

Okay, if you are still reading–throw the Tums in the garbage and go straight for the bottle of Jack Daniels.

2110: Encyclopedia Dramatica

Just in case anyone thinks the Urban Dictionary is an isolated case, here is the Encyclopedia Dramatica (click here) with pictures.

“Retard” From Encyclopedia Dramatica

Female retard. The suitable cure is rape.
Not to be confused with: Retired
A retard is a sub-human put on this earth for the entertainment of actual people, due to their handicap being incredibly funny. A term of endearment for the mentally handicapped or stupid. It is commonly believed that retards are created by fucktarded, mouth breather sperm. Though plausible, this is the cause of furries, not retards. However, a proven, common cause of retardation is your mother getting stuck in the stink, forgetting to wipe off the tard-infested shit off your father’s dick, then getting stuck in the pink thus conceiving your retarded ass (for great justice). Check science. There are some new developments that indicate that some forms of autism may be linked to early television viewing. A common tell-tale sign of being a retard is trying to use the plugs from Hot Topic to pleasure yourself, suffering from dandruff, being gay, or being a weeaboo. Alternative theories suggest that retardation is also caused by punching pregnant women in the stomach, or when a man uses a condom, as some Durex factories carry headlice, stringrays and AIDS.

Summary: If you want to go to either of these sites and raise hell–go for it. When I was young I might have taken them on. Now that I’m 60, I try to choose battles I can win.

Making Change

There are many definitions of “retarded” on Google. Marc Gold isn’t here to redefine it again but he would tell us to “Try Another Way.” I choose to believe these people really don’t know any better. Tomorrow I will show you a letter I wrote to a major blogger who is read by 1000s every day. He changed. He said he would no longer use the word “retarded” and in the last year he has kept his word. I’ve been checking.

That was a small victory I can live with. That is an advocacy success story that helps me sleep nights. That gives me hope the same way Rosa’s Law gives me hope.

Maybe Rosa’s Law will eventually change some of the misinformation and cruelty toward people with intellectual disabilities.

Comment below if you would. It is safe to rant here. And, toast me and Aaron in your virtual drink.

Keep Climbing: Onward and Upward.

Mary