Sunday, May 25, 2008

Roy

Roy lived the last fifteen years of his life in a studio apartment downtown. It was a clean, well maintained building on the bus line, a building with twenty-four hour security. He attended a senior citizen’s day program most days; at night he enjoyed watching sports and news programming. He had several friends with whom he corresponded by mail; he was well liked by his neighbors. When he was younger, he’d worked at a racetrack. He lived an ordinary life.

I worked in Roy’s apartment building the last four years of his life. I noticed a few things about him, the way he stood, swaying, leaning so far back he seemed always on the verge of falling over, the way he walked, his head turned down and to one side. He had an intense stare, but this was not intimidating, as he tended to direct it near, but not at the eyes of the person he was speaking with. He wore the same style of shirt every day.

Roy and I had some things in common, deeply entrenched patterns for navigating our days, and a love for drawing and coloring with crayons. Unlike most of his neighbors in the building, he took rules seriously, never leaving the community room without a lid covering his coffee, emptying his garbage daily, whether there was anything in it or not. Not once did anyone complain that his television was too loud.

Roy was a great source of information, often arriving at my office or the community area to report the latest news of catastrophic weather around the globe or to inform me of the latest career move of one of his favorite news anchors. His talk was more a series of announcements than conversation. These visits were always the highlight of my work shift.

Roy didn’t cook. He was more than willing to try it, but his sisters felt sure he would be both safer and healthier if he got some help with that. They made arrangements with a local cafeteria owner to bring him hot meals each day. On the weekends, his sisters picked up his laundry, and took him shopping or to their house or a park or the farmer’s market. Ordinary stuff.

I never asked Roy or any of his family if he had an autism diagnosis. I suspect he didn’t, and it really doesn’t matter. I don’t think his neighbors thought of him as especially different. Someone would check up on him when his family was out of town, but the same is true for many of the building’s other residents. He fit in there.

Each Mother’s Day, Roy explained to me, using the same words, that his mother had passed away. He carried her portrait with him to Mother’s Day Mass at the church he attended weekly.

Some time before he died, Roy’s doctor informed him that he had a few months left to live. The doctor took his time explaining, making sure Roy understood. He asked if Roy had any questions. He thought for a minute. He did have one. “What do you think about that new airplane?” he asked. “I heard it’s as big as two football fields.”

Roy died Thursday morning, May 22, 2008. He was 79 years old. He was my friend, and I will miss him.

Saturday, May 24, 2008

Not Special: Support Alex Barton

Alex Barton is five years old. On Wednesday, his kindergarten teacher decided to teach her class a bit about bigotry and exclusion. Unfortunately, she seems to have been for rather than against these principles. Wendy Portillo invited the members of Alex's class to state the reasons they did not like him. Then a vote was taken. By a vote of 14 to 2, Barton was removed from the class.

Since his "eviction" from the St. Lucie Co. (Florida) class he has felt "sad" and has repeated the words, "I'm not special," over and over to himself. The reasons students gave for disliking Alex included that he is "disgusting" and "annoying." Since February, the young man has been in the process of being evaluated for Asperger syndrome.
Let me be clear: I don't care whether or not Alex is assigned a diagnostic label. I don't care what he did to be classified as "disgusting." The behavior of this teacher is reprehensible. She has not disputed the allegation, but according to Port St. Lucie spokeswoman Michelle Steele, has confirmed that the incident did take place.
Please help ensure that proper disciplinary action is taken. People with differences of all sorts deal with bullying from peers every day. It is no secret to many of us that teachers and others in authority can be bullies, too. But when the bullying is directed and produced by a so-called educator, surely this must cross a line visible to all. Please take a stand against this abuse. If you have a blog, please write a little something in support of Alex Barton. Maybe he isn't special. He shouldn't have to be. He's a five year old boy, a human being, worthy of respect.

Write the St. Lucie County School Board at
webmastr@stlucie.k12.fl.us

The school's principal is Marcia Cully: (772)337-6730

Edit: A more complete list of contact information, gathered by Ari Ne'eman of the Autistic Self Advocacy Network (ASAN):

Morningside Elementary School Principal: Mrs. Marcia Cully cullym@stlucie.k12.fl.us (772) 337-6730St.

Lucie County Schools Superintendent: Michael J. Lannon4204 Okeechobee Road Ft. Pierce 34947-5414 Phone: 772/429-3925 FAX: 772/429-3916 e-mail: lannonm@stlucie.k12.fl.us

St. Lucie County School Board Chair: Carol Hilson 772-519-0397 HilsonC@stlucie.k12.fl.us

Vice Chair:Judith Miller772-528-4545 MillerJ@stlucie.k12.fl.us

Please copy info@autisticadvocacy.org on any emails you send. ASAN asks that everyone use respectful language in addressing those listed.

Thanks to Amanda at Ballastexistenz where I first learned of this.

Friday, May 23, 2008

Work With Me

Autism: Work With Me, Not On Me. This is the theme of the Summer Autism Conference at University of San Diego’s Autism Institute. Quite a switch from the usual approach, but that’s what you get at USD: true collaboration and support, rather than attempts at changing, fixing or eliminating autistic people.

I am happy to report that a group of Autism Hub bloggers has been invited to present at the conference to be held June 23 through 25. As some of you know, Steve, Do’C, and I were at the winter conference for a breakout session. This time, we will do two breakouts and a full session, presenting to the entire group of conference attendees. Rounding out the group will be Estee Klar-Wolfond and yep, you heard right, Autism Diva.

The conference will be held at USD’s Joan B. Kroc Institute for Peace and Justice. You can find the daily schedule here and a brief description of our presentations here. I hope that some regular Hub readers will be able to join us to discuss some important issues, including self-advocacy, parenting, acceptance of differences, and how to tell the difference between science and science fiction.

Again, we have Steve D. to thank for working with the folks at USD to enable our participation. There is still time to register! Join us there if you are able, and please help us spread the word.

Wednesday, May 21, 2008

Normal

Steve D., of One Dad's Opinion, recently posted about the definitions of normal, human, and fully functional. He and and some other bloggers had been asked by a researcher to define the terms independently and relative to one another. I also participated in the survey. Not surprisingly, my responses and Steve's share some common territory, diverging more stylistically than pragmatically. Of course, you have read his post right? Well, then go read it, okay? I'll wait.

Did you read the comments? There were some good responses in the comments.

Anyway, I figured my response is a bit too long to put in a comments section, so I told Steve I'd post it over here. As with everything, there's more than one way to answer a survey. Here's mine:

Normal:

Pertaining to norms, that which is average or close enough to it, usually not more than one standard deviation on a bell curve. Some people use the term normal to express value judgments, or in attempt to enforce conformity. People fear not being normal. It’s primitive, I think, the fear of exclusion, because in difficult times exclusion can mean death.

We live in difficult times.

Fully-Functional:

To be fully functional is to do whatever your society expects of you in the ways determined by those in power, who necessarily must be within the one standard deviation. To be a fully functional citizen, one must work at a job and pay her own way. If you don’t have a job, it is your fault. The manager looked at you and said, “I don’t think this is going to work out.” The manager is fully functional, in the Functionalist sense. He is keeping the riff-raff out.

Human:

Homo sapiens. A person. A man, woman or child. Except for Hitler. Oh, yeah, and Osama Bin Laden. And Charles Manson. Child abusers, sexual predators, sociopaths, murderers. These are a few of the labels people use alongside words like “inhuman” or “monster.” The great Me / Not me dividing line. Which side am I on if I laugh when the others are crying?

Normal, Human:

I was a normal human, but broken. Couldn’t get it together. Defective. You know you could do this, if only you tried. Yes, you are probably right. But I don’t know how to “try.”

Normal, Fully Functional:

I will work extra hard. Yes, I will arrive thirty minutes early. I will skip my break. I will volunteer for holidays. Then you will like me and keep me at this crappy job forever.

Normal, Normal:

You are perfect as you are. Take this pill. Now you are different. Now you are perfect as you are.

Human, Human:

Have you heard the story of the girl who cried all day, and I am not exaggerating, I mean all day, from 8AM until 6PM and maybe even longer, over a sad song on the radio? She was autistic, you know. Her parents did not know what to think. Especially later, when she didn’t cry at funerals. They didn’t know what to think. I will tell you a secret, though. The music at the funeral home was not very good. It wasn’t functional.

Fully Functional Normal Human:

The pearl is in the river. There is a light that never goes out. Have you ever eaten a pine tree? Ticket! Ticket! These are a few of my scripts. Speech is sometimes required. This is how I can function.

Human:

Is not to have Super Powers. I have been invisible. At night, sometimes, too, I have flown.

Human Normal Human:

I tell you I have never wanted to be. Sometimes it would have been nice to be considered to be it but not to be it. No. I never wanted.

Normal Human Functioning Fully:

Eat. Work. Sleep. Play. Use the bathroom. Don’t forget. Don’t forget to flush.

Normal:

That which is broken.

Normal:


Losing its meaning.

Normal:

Laughing at videos of people slipping on ice.

Human:

Turning away.

Normal:

Turning away from human turning away from normal laughing at people slipping on ice.

Fully functional:

The leg will be fine in a few months.

Normal:

I am so happy it wasn’t me.

Human:

Ouch for you, ouch for the other!

Fully functional:

“They, since they were not the one dead, turned to their…”

Normal:

Nonsense! You are hereby excluded.

Human:

Ouch.

Normal:

Boo hoo! Grow up, why don’t you?

Human:


(Quiet, invisibly quiet, invisible)

Fully functional:

Choosing.
Choosing to live anyway.
In difficult times.

Tuesday, May 20, 2008

Seidel Conspiracy Trading Card



Possibly the first in a series of Autism Hub trading cards. To have your own card included in the set, (1) do something(s) extraordinary, and (2) be treated abusively for the thing(s), and (3) be dismissed as someone who couldn't possibly have done the thing(s) himself or herself. Also be a member of Autism Hub. For anyone who finds these standards too demanding, you can always make your own. You can nominate yourself or another hub member for a card in the comment section here.
Disclaimer: The woman pictured is not actually Kathleen, but an anonymous 1960s housewife "type." The man is not Kathleen either. He is Glen Campbell who sang "Dreams of the Everyday Housewife," an ode to egoism as much as to sexism. The rat could not be reached for comment. W e are unable to state with certainty that the rat is not actually named "clifford." The money and drugs are imaginary, part of the "dream" cooked up by someone or other. No autistics were harmed in the creation of this virtual trading card.

Monday, May 19, 2008

This Autism Situation

In today's Courier Journal (Louisville, KY), is a follow up to the story of Matthew Montgomery, his mother Jeanie, and an Oldham County school. During a single fall semester, Matthew was placed in a small time out room (or closet, depending on whom you ask) nearly eighty times. Sometimes he was locked in. Sometimes he came home from school with cuts and bruises. In one case he was taken to a hospital where doctors suspected abuse. This is called education.
Mrs. Montgomery, quite understandably, decided to homeschool her son. The school has been clear: Matthew is to return to classes immediately. On May 8, Jeanie received a written warning, a final notice that she and her husband will face legal action unless they comply.
Could the problem be that the Montgomerys have not followed the correct procedures? No, that's not it...
From the Courier Journal:
To receive home services, state law requires a signed physician's statement that the child's condition "prevents or renders inadvisable attendance at school."
Montgomery said she has provided two such letters from Matthew's pediatricians, the last one asking for more time for an independent psychological examination of the child. A March 28 letter from Dr. Jeff Wampler, with All Children Pediatrics, cited Matthew's autism and other health issues, including allergies and gastrointestinal problems, as a reason for requesting temporary homebound services.
On an application the school requested, Wampler also cited investigation for abuse at school."In a follow-up letter to Oldham school officials on May 1, Dr. Jeffrey Burton said he believes Matthew may be suffering from fear and stress over his experiences at school and requested time for a psychologist's evaluation.
"I would encourage you to allow Matthew's parents more time and latitude before you start any type of legal proceeding," Burton wrote. But Coorssen said the school system does not believe the physicians' letters adequately detailed Matthew's medical problems.
"Those are just blanket statements you can get from anybody," she said.
Now, I'm not an expert in this area, far from it. But it would seem logical that recurring bruises and abrasions, isolation for extended periods of time, these sorts of things in themselves are the "conditions" clearly making this young man's attendance at the school "inadvisable." Logic, though, has no place in the paper factory. (Please read this post at Ed's Autism Page. It's important.)
The lessons Matthew has learned from his school are not the kind that need more reinforcement. There will be plenty more chances for him to learn about cruelty, incompetence and intolerence.
"These are not easy cases, believe me," said Fendley (the county attorney in charge of truancy cases). "This autism situation is going to be a difficult one."

Sunday, May 18, 2008

Banned!

In 2008, there are many places within the community where autistic people are not welcome. I know this. I'm used to the idea, and often speak about the problems created by our society's disgraceful "insistence on sameness." Behaviors that are different, unexpected, outside the norm, have been used as excuses to remove autistics from stores, airplanes, playgrounds, just about any place you can name.
Somehow, though, this one took me by surprise. The family of 13 year old Adam Race has been ordered not to return to their Minnesota church. Served with a restraining order after attending mass on Mother's Day, and threatened with arrest this morning, the Races found it necessary to attend a different church.

What are they teaching at the Church of St. Joseph? Whom or what do they worship there? Church officials claim the young man's behavior is disruptive and frightens the other parishioners. I have to ask...somebody has to...what would Jesus do?

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