The Company You Keep

Social Network Sites such as MySpace, Friendster, Twitter, Windows Live Spaces, YouTube, Xanga, Bebo and Facebook were designed to be widely accessible to those with computers and Internet connectivity.  They were launched in the hopes that droves of people would arrive at their virtual doorsteps and become part of their digital world. 

But the idea of social networks isn’t new.  It isn’t something that surfaced with increased computer accessibility and Internet connectivity.

People have used the idea of social networks for over a century.  The term is meant to describe complex sets of relationships between members of social systems on any number of levels, from interpersonal to international.

J. A. Barnes started using the term systematically in 1954 to denote patterns that encompassed concepts traditionally used by the public as well as social scientists.  There were bounded groups such as tribes and families and social categories such as gender,  ethnicity and causes.  It’s all right there in Barnes’ book entitled “Class and Committees in a Norwegian Island Parish.”

In the decades that the term social networking has been used, it’s not uncommon to find groups segregating themselves by nationality, age, educational level, or other factors that typically segment society including causes such as Autism Spectrum Disorders.

Recently, I have been at the center of attacks by a handful of people on a social network who object to the fact that I am culling my friend list based on specific criteria.  I have been accused of being a Nazi by one individual and accused by two others of culling the list so I can speak disparagingly about them without fear of repercussions.

So let me explain the how and why of this culling to help you understand the real reasons behind my actions.

Let’s say that a handful of social network friends claim repeatedly that ice cream causes drowning.  The reasoning they use is that the number of people who drown during hot months increases dramatically just as the consumption of ice cream begins to increase.  In fact, they have ‘proof’ that there is a rise in drownings at the same time that there is an increase in ice cream consumption.

Then let’s say that I point out that while it’s true that ice cream consumption increases over the same months that there is a rise in the number of drownings, it has been repeatedly disproven that the two incidents are related to each other past a passing parallel in time.

If the handful of people who choose to believe otherwise persist with their insistence that they are correct and that all the correct and corroborated scientific evidence in the world is wrong, then I must come to the conclusion that this ’social network’ relationship is not a positive interaction for all involved.

It makes sense to weed those people out since they will not add anything to the social network experience other than the repetition of personal opinion that is known to be seriously flawed and wrong.  Weeding them out of my social network has nothing to do with hiding out so I can bash them without being reported to the Administrators of a social network.

It has everything to do with choosing to interact in positive ways with people who add to my social network experience and who feel that I add to their social network experience.

There’s an old saying that states, “You’re known by the company you keep.”  In the long run, it will be to one’s disadvantage to try to pacify those who insist that they must be kept on as social network friends when there is no reason to continue the connection.

And as far as I know,  there’s no rule anywhere in this world that says you must keep someone in your circle of friends if there’s no common ground between the two of you.

What are your views on social networks and culling lists?

Elyse Bruce
Founder and Creator
MIDNIGHT IN CHICAGO

A Perplexing Problem

Oftentimes we believe that if we go to a book or a parenting magazine or the Internet, that we can find simple solutions to difficult problems. We like to believe that life’s difficulties can be summarized and resolved within the context of a few published words.

But there are some problems that are less easily solved, and I am about to discuss one of them here.

The problem?

Hypothetically speaking, what if you have a special needs kid in a class who is being picked on by another special needs kid? What would you do to resolve the situation?

Wait!

Before you answer…  What would your solution be if you found out that the “bully” had the exact same diagnosis, but was lower functioning than the person he was picking on?

Wait!

Before you answer… Add this to the mix: What would you do if the classroom instructor believed that the problem could be resolved by having the two parties – that is to say, the antagonizer and the antagonized – become best of friends?

Wait!

Before you answer…. What would you do if the antagonized person didn’t want to become friends, ever mind best of friends, with his antagonizer?

Wait!

To me, the solution is simple: Simply insist that the classroom instructor keep the two children away from one another and make sure that there are no adversarial interactions between the two.

But if the instructor is not open to this idea, as a parent, what would you do?

I look forward to your answers. Please respond to this blog entry.

In the meantime, I’d just like to ask a secondary question: Why is it necessary that everyone be friends in a class? Isn’t part of learning how to be social learning to reject unacceptable peers as potential friends from time to time?

I don’t mean reject in the mean sense but rather the use one’s own judgment as to whether a peer is a good fit as a friend or merely someone who is an acquaintance with whom you interact respectfully?

After all, when we become adults, not only do we chose our friends, our partners, our jobs (and, by proxy, our coworkers), our churches (and, by proxy, everyone in the church’s congregation) with deliberate care, but we also reject people for any number of reasons.

We may block any of the aforementioned people from becoming a part of our lives because they are not of our social class, do not have our morals,  do not hold our political views, have not achieved our level of education, do not believe in the same God as we do, are too tall, too short, too fat, too thin, too pretty, too ugly, don’t dress as we do, don’t like the same foods as we do, don’t like the same TV shows, don’t like the same sports teams.

Practically our entire adolescence is spent forming, disbursing, and re-forming cliques in which the most tenuous common traits are cause enough both for social bonding and social dissolution, and though this process becomes less extreme as we age, it persists throughout our lifetimes.

If society deems this social and anti-social behavior acceptable, then why can’t a classroom instructor accept it when it’s suggested that two kids  — who have already demonstrated that they cannot get along with each other –  be kept apart from one another before the situation explodes into a confrontation?

Thomas D. Taylor
Co-Creator
MIDNIGHT IN CHICAGO

Three Strikes And You’re Out

I have a lot of connections in the autism world and some of the bonds that I have established are fraying.

Three separate people in the autism community, one of them a leading blogger, and two of them executives in very large autism organizations, have told me that the reason they post and discuss the vaccines-cause-autism theory is because even though they know the information has been scientifically disproved, they still believe people need to determine for themselves whether or not they believe vaccines cause autism.

I don’t buy that explanation.

I think the blogger just wants a lot of activity on her blog and the two autism organizations in question want to keep the donations flowing in.

Nicolaus Copernicus was a mathematician and astronomer who lived from 1473 to 1543.   He realized that the stars, the sun and the moon did not move as Aristotle postulated.  In fact, the earth was not the center of the universe; the sun was the center of our universe. 

As he put forth his heliocentric cosmology based on sound scientific research and methods, he was attacked by the majority of society for daring to provide facts to back up his claim.  In fact, Copernicus was subjected to a great deal of abuse for his work but he persisted despite the fact that he was persecuted for doing so.

Bravery is when you tell the truth and present the facts and risk the consequences.

If you post on your blog: “Vaccines don’t cause autism and here is the research to prove it”, a consequence is that you will lose the vaccines-cause-autism peanut gallery. And in addition to that, more likely than not, they will throw the discredited Andrew Wakefield unproven hypothesis in your face and spam your blog with anger and bad language.

If your organization says  “Vaccines don’t cause autism and here is the research to prove it”,  you need to accept the fact that the vaccines-cause-autism crowd is going to withdraw their funding and put it elsewhere.

But here is another consequence of telling the truth: You properly inform people of the facts so that they can make informed decisions.

If you know that all credible research points to the fact that vaccines do not cause autism, then you won’t subject the autistics you care for to United States Food and Drug Administration  unapproved-for-autism-chelation-therapy and a host of other scientifically disproved quack cures. Additionally, you won’t waste valuable money on these quack cures but will instead spend it on good and proper education and vocational assistance for the autistic you care for.

Isn’t it morally correct, and just plain better to do that than to confuse people with misinformation so that you can keep people reading your blog or keep people contributing money to your organization?

Your comments are welcomed.

Thomas D. Taylor
Co-Creator
MIDNIGHT IN CHICAGO

Physician, Heal Thyself

This Saturday, Elyse, Lewis, and I went to the Whetung Ojibwa Art Gallery on the Curve Lake Native American Reserve in Ontario, Canada.

I am continually impressed with the quality artwork there and I can assure you that all the artists who exhibit in the gallery are very talented individuals.  More importantly, their artwork says something and it speaks loudly.  It expresses what the artists think, how they feel, what they see, how they see it, what they wish to impart, and so much more.

I have been to the Whetung Ojibwa Art Gallery on many occasions and have on a few of those had the good fortune of meeting Freddy Taylor.

Taylor is a survivor of a bleak time in Canadian — and North American - - history. On the Whetung Website, you can see a synopsis of his life which is better and more succinct than I could write here:

He “spent ten unhappy years at the Mohawk Institute, a Native Residential School, in Brantford, Ontario. He suffered the loss of his native language along with memories of family and background. The cultural differences he found upon returning to Curve Lake at the age of sixteen were too extreme and he remained at odds with his people, the law and himself for years.  But when he turned his attention to the art of his people, Freddy Taylor discovered a talent that even years of Residential School had not managed to extinguish. Over time, the angry images into which he poured his outrage and hurt evolved to depict a journey of healing and hope. Now the animals you see in his paintings bring peace and strength to this once-troubled artist.”

Taylor also makes it a point to speak out about the repression he endured during those bad times.  He takes the time to speak to school kids about his healing process after years of abuse in the residential school system.

“Some of these kids don’t know what the residential schools were,” Taylor said. “So I explain to them my artwork, how the different animals give me strength. I tell them how the colours cover up the pain.”

Taylor serves as inspiration for anyone who has been stymied by a roadblock in their life.  The success he has had with his artwork also serves as a particular reminder to anyone – including autistics — who may have been told that their futures are limited by virtue of birth, circumstances or anything else.

You are only limited in life by what you are willing to believe limits you for the rest of your life.

Autism is a blessing, not a curse, and there is no reason why any Autistic who has been subjected to prejudice, quack cures, bullying, abusive treatments, over-medication, or bad schooling should feel that their life ends with the bad.   Freddy Taylor has shown that out of bad can come good and Autistics can find that goodness within themselves.

Know thyself.  Embrace thyself.  Be a teacher and an inspiration for others.  True acceptance begins with self-acceptance and true knowledge comes from self-knowledge. 

Freddy Taylor is one of the most knowledgeable, accepting people I have ever had the pleasure to meet.

Thomas D. Taylor
Co-Creator
MIDNIGHT IN CHICAGO

Autistics Speak For Themselves

I read in Disability Scoop that Autism Speaks finally pulled its video entitled “I Am Autism” off their website after being heavily criticized by a coalition of more than two dozen disability organizations.  Of course, the video is still available for viewing on the Autism Speaks Vids channel on YouTube among other places.

The article reports that “the video includes an eerie voice-over declaring that autism will ensure that your marriage fails, bankrupt you and make it virtually impossible to go out in public without experiencing embarrassment or pain.”

Most people on the autism spectrum do not believe Autism Speaks speaks for them – a valid point of view given that Autism Speaks reportedly does not have a single autistic person on their large board of directors. 

It is outstanding to see the autistic community come together to state clearly and proudly that Autism Speaks does not speak for them. With that said, people on the spectrum must keep in mind that speaking up just once, or even every now and then, is not enough.

Speaking up here and there instead of all the time is what allows organizations who do not have autistics’ interests at heart to run roughshod over them.

Many on the spectrum try to avoid embroiling themselves in causes and controversies, which is not necessarily a bad thing, but they do so to their detriment sometimes.

People need to remember that advocacy means not just advocating for one’s self but for others, too.

I could conclude this blog entry by saying “Thank goodness for autism rights organizations!”  

What’s needed is not just for a few organizations to spearhead advocacy campaings for change, but for all autistics to speak up and out on their own behalf.

Only then will Autism really Speak.

Thomas D. Taylor
Co-Creator
MIDNIGHT IN CHICAGO

Today’s Theme: Autism

All theme parks should come with a warning: “This theme park may not be suitable for some autistics or some people with sensitivities.”

It’s not that theme parks don’t try to make their parks enjoyable to everyone.  It seems to me that if they were able to make the theme park experience better for certain people on the spectrum and those with sensitivities, they could make the theme park experience better for everyone.
 
To help you better grasp the thrust of this post, here are three important definitions to keep in mind:
 
Hypersensitivity is when a person experiences heightened or extreme sensation in one or more of the five senses.
 
Hyposensitivity is when a person experiences a delay between when a sensation occurs and when it is experienced. For example, someone may tap a person on the shoulder but the tap may not immediately register with the individual.
 
Synaesthesia is a condition in which one type of stimulation evokes the sensation of another, as when a sound produces color visualization as well.
 
Autistics and sensitive people may have one or more of the above conditions.
 
My observation is that theme parks are planned in a continuous store-ride-restaurant configuration. Guests head to the store or to the ride or to the restaurant and exit headed for the next venue.
 
The result is people crisscrossing to get where they are going.  If you have a whole row stores, rides and restaurants with venues on both sides of the row you can imagine the chaos that an autistic might feel just LOOKING at it. 

Factor some of the following into the equation.

1) Kids screaming because they didn’t get the toy or snack they wanted or who thought the ride was too scary or who are just so happy they need to scream it out loud; 

2) Parents screaming at their children and at their partners along with people talking over each other just to be heard;

3) Different songs coming from stores and restaurants and rides that are all next to each other;

4) Noises from the rides as wheels, gears, nuts and bolts whirl and twirl and groan under the relentless demands of overly long line-ups; and

5) Announcements over the public address system.

It’s easy to understand how SOUNDS can be overwhelming.

If the park is crowded and people are bumping into each other, TOUCH also becomes an issue. Oversized theme park characters want to shake your hand or pat you on the head or back. For people on the spectrum or with sensitivities, this can be startling as well as aggravating. 
 
The aromas from the restaurants, which might be pleasant individually, blend to create noxious SMELLS, especially when combined with the body odour and sweat from theme park visitors. Add smells from the gift shops (candles, perfumes, etc.) and it all becomes more than some people can bear.
 
As for TASTE, sometimes the air around the individual is thick with food particles floating through the air, being breathed in and, by virtue of that, leaving odd tastes in the back of the throat.  These aren’t tastes of the individual’s choosing but rather, tastes being forced upon the individual.
 
Even though theme parks are by design intended to be total immersion experiences, they can be overwhelming long before an individual enters a store, hops on a ride, or eats at a restaurant.

Think of it this way.  Being buried in the sand at the beach can be a pleasurable and it is usually quite easy to pull yourself up out of the sand.  However, if layer upon layer of sand is packed on to you, you could find yourself in a life-threatening situation that could prove fatal in the end.  And so it is with overwhelming and overloading the sense of Autistics and those with sensitivities.
 
People would do well to remember all of this if they are taking an Autistic to a theme park, and the architects who design theme parks would do well to consider the needs of those on the autism spectrum as they draw up their plans.

Thomas D. Taylor
Co-Creator
MIDNIGHT IN CHICAGO

Comparison Shopping

As you know, scientific experiments have been a way of life for Lewis since he was a toddler and most likely since before as it appeared to me as well as others that this is Lewis’ nature.

When he was an infant, he was constantly comparing how any two items felt, always using one of the two items as the control.  I would lay out his blanket on the carpet in the living room and place him in the centre of the blanket along with a few of his toys.  It wouldn’t take long before he was at the edge of the blanket and well on his way to tactile discovery.

Both hands would reach out to the carpet pile and his fingers would drag against it in a rhythmic fashion.  Then one hand would go back onto the blanket and the other hand would continue to stroke the carpet.  Within seconds, the hand on the carpet would fall silent and the hand on the blanket would begin to stroke the blanket.  Thus began the start of what I referred to as the comparison shopping.

Once the blanket and carpet had been thoroughly compared, Lewis’ little hand would move to a stuffed toy or a cloth book on the blanket and the comparison between the third item and the carpet would begin.  A few minutes later, the comparison between the third item and the blanket would begin.

The entire process would continue for as long as 20 minutes at a time … carpet and blanket, blanket and toy, toy and carpet, toy and blanket, blanket and carpet. … until he had exhausted the process.

It was amusing to watch the furrowed brow on this 6-month old infant as he processed the tactile information he was gathering.

Too often adults are unwilling to allow infants and children to experience and explore the world in their own unique fashion.  In preventing them from taking in what is presented to the senses, we skew their perceptions.  While it is certainly important to ensure that our children are safe, it is just as important to give them room to learn and grow.

When you allow a child to experience and express his environment in ways that are unique to the child, you allow the child to unlock the strengths within. 

All children, regardless of a diagnosis or the lack thereof, experience and express those experiences in a way that is unique to the child.  When we put parameters where none need be found, we are doing children a great disservice.  It’s in letting children be true to their nature that we learn so much more about ourselves, our environment and our own true nature.

Elyse Bruce
Founder and Creator
MIDNIGHT IN CHICAGO

Taking Art for Granted

One of the things I have noticed when visiting art museums is that most visitors look at a piece of art for about five to seven seconds before moving on to the next one.

I am not going to berate anyone for that.  Art means different things to different people. If, for some, art is a purely aesthetic experience, where they say “I like that!” or “I don’t like that!”, that is okay by me.

But I am one of those folks who can spend days in an art museum, and can spend as much as fifteen minutes or more looking at one single piece of art.

Today I thought I would show you through my eyes what I see when I look at a work of art

Traffic Conditions

“Traffic Conditions” by Norman Rockwell is one of my personal favorites as far as pointing out what is good and what is bad in a painting. In my living room this morning,  I opened a book of Rockwell water colors and studied this one for half an hour.

It’s a simple vignette about a delivery van stopped by a puppy.  The van and puppy are sitting in the middle of an alleyway.  As one of the delivery company’s men tries to entice the dog out of the alley, onlookers from buildings on both sides of the alley watch the scene unfold.

The Saturday Evening Post made this the cover of their July 9, 1949 issue and while I understand why, at the same time I cannot understand why.

I like this painting because of its great execution of forced perspective, and also its attention to detail.  There is rust on the truck’s bumper for example, varying tone in the brick, good use of light and shadow on the brick walls, and the reflection in the truck’s windshield is well done.

But the painting has fatal flaws.

1.  Rockwell keeps the undercarriage of the truck vague and in shadow.  We ought to be able to see part of the truck’s suspension system and maybe the lower part of the engine and exhaust systems.

2.  On the lower left side of the left building, course’s of bricks combine … the only way for Rockwell to force the perspective, something that cannot happen in reality because if this were a real building, it would be wedge-shaped and objects within would roll from the front of it to the back like peas in a tipped can.

3.  In that same building, we have a window washer hanging out of a window with no straps holding him on.  His positioning is awkward. If he is holding on to anything, it would have to be the lower sash of the window, which would mean he is supporting the majority of his weight with a minimal amount of grasp.

4.  Check out the way the man in the lower left corner looks as though he is lying on the ground as he points at the dog.  Maybe he is standing in a hole or something.

5.  One point of contention is the name of the company painted on the truck.  Shouldn’t “Pepies” be “Pepie’s”?

But here is my biggest problem with the painting:  There is an old woman on the left side standing up.  We must presume she and the boy next to her are of average height.  Now if we were to move the crouching man from the delivery van forward and place him next to the old woman, he would probably be double her height and triple the height of the boy!

Did the Saturday Evening Post see these flaws in Rockwell’s painting? For as many as I have pointed out here, there are twice as many I have not pointed out.  They should have noticed something.  But the Post was not an art magazine anyway.

Rockwell is able to wow viewers because of the emotive power of this scenario.  It is a situation in progress and we do not know what it’s outcome will be.  Yet if it were not for the emotional appeal of the painting, it would certainly be seen as one of the most flawed of his works.

So folks, if you wonder how artists see other artists’ works, you will hopefully have a better idea after reading this post.

Thomas D. Taylor
Co-creator
MIDNIGHT IN CHICAGO

Spam, Blam, No Thank You Ma’am

This past weekend, I received spam email from a local entrepreneur who has recently completed a small business program.  This entrepreneur didn’t take the time to know who she was emailing and copied a number of businesses to the same email.

Yes, this was definitely spam by its very definition because it was both unsolicited and it was bulk email — in other words, there were multiple recipients of the same email.

An electronic message is deemed to be “spam” when:

(1)  the recipient’s personal identity and context are irrelevant because the message is equally applicable to many other potential recipients;

AND
 
(2)  the recipient has not verifiably granted deliberate, explicit, and still-revocable permission for it to be sent.

As we all know spam is about consent, not about content.  The content of the email is irrelevant; all that matters, by law, is that the message was sent unsolicited and in bulk.  This is what makes it spam. 

Industry Canada states that any unsolicited email sent to the email address of an individual who did not consent to receive that email could be in violation of the federal Personal Information Protection and Electronic Documents Act (PIPEDA) and, possibly, other substantially similar provincial legislation.

The Office of the Privacy Commissioner has determined that a business email address is personal information and, therefore, protected by PIPEDA. Such information can be collected and used without consent, but only for its intended purposes.

There was a recent situation involving Suzanne Morin and her business email address.  Her email address was collected from an online professional association membership directory. She filed a complaint with the Privacy Commissioner because of unsolicited email solicitations she received from a third party.

The Office of the Privacy Commissioner found that one’s business email address is, for the purposes of PIPEDA, personal information. The Office found that the collection and subsequent use of Ms. Morin’s email address for commercial email solicitation was done without her consent and in contravention of the Act.

Other countries have anti-spam regulations.

The United States has their CAN-SPAM Act of 2003 (Controlling the Assault of Non-Solicited Pornography and Marketing).  Australia enacted their Spam Act 2003.  The United Kingdom has their Privacy and Electronic Communications Regulations 2003.  France enacted the Loi pour la confiance dans l’économie numérique 2004. And the European Union has their EC Directive 2003/58/EC.

In the spirit of Dave Carroll and his public commentary on Ms. Irlweg and United Airlines, I would like to state that the Ms. Chesebrough’s and financial and business solution start ups of this world should brush up on why spam is not welcome by business people either at their personal email address or their business address.

Lord knows that when the Electronic Commerce Protection Act Bill — also known as the ECPA — is passed into law in Canada, senders suspected of spamming will experience harsher penalties than the harsh penalties already in place with CAN-SPAM in the U.S. 

In fact, once the ECPA bill becomes law, it won’t just be Internet Service Providers who can sue spammers.  Yes, in Canada, individuals will be allowed to sue senders suspected of spamming and while the fine is currently set at $200 per item, class action suits could spell the end of businesses that do not take the time to take current and future legislation seriously.

Besides, who would want to do business with someone who so easily disregards the current laws of the land?

Elyse Bruce
Creator
MIDNIGHT IN CHICAGO

This Is What New Normal Looks Like

It’s not every child who can say that they know more about the pediatrics ward than he ever wants to know in one lifetime.  Unfortunately, there are children in this world who know far more than they should about it. 

Lewis is one of those kids; he has spent more than his fair share in hospital from the time he was born up until the present and he will spend more than his fair share in hospital in years to come.

When babies are born, they are rated on the APGAR scale that addresses five different areas, rating each area either 0, 1 or 2 depending on how the newborn presents.  The APGAR is administered at birth, 5 minutes and 15 minutes. 

Now, the best news is that the infant rates 10 across the board as this means the baby is healthy and well.  Lewis rated a 2 at birth, a 2 at 5 minutes and a 4 at 15 minutes.  Needless to say, this was a very bad start for a baby who was a month overdue in the first place and had to be induced in the second place and was finally delivered by Cesarean section in the third place.

Thus began the first of many hospital stays, most of them in isolation, on Pediatric Floors.

You would think that a child with so many health issues would be afraid to venture too far away from an Emergency Room but not Lewis.  In fact, Lewis has demonstrated a zest for life that you would expect to find in someone who has never had a sick day in his life.  It’s his approach to life that makes him the engaging child he is.

Recently, Lewis underwent major surgery in an effort to force his Myasthenia Gravis into remission.  Seeing him in Critical Care afterwards was one of the hardest and yet, happiest, days of my life. 

Like any parent, I am devastated to see my child in pain and like any parent, I am overjoyed to see that my child is alive.  And so, seeing him in Critical Care after his thymectomy was a bittersweet moment that both lifted my spirits and dashed them against the rocks.

As he healed from the surgery and was moved to Intensive Care and then Observation Care, I kept reminding myself that he has always been a fighter.  His eyes would flutter open and in a morphine haze, he would say, “Mom, I love you.”  I would smile back and say, “Thank you.” 

It was a private joke he and I share that goes back to his early hospitalizations where I would whisper in his ear whenever I had a chance, “Lewis, I love you.”  As a toddler, he would smile each time I whispered this in his ear and he would answer, “Thank you.”  Now the tables were turned and the exchange was just as precious.

On the third day after the operation, out of the blue, he turned his head towards me and said matter-of-factedly, “Remember mom … this is my new normal.  I’m still the same kid I was before the operation.  This is just my new normal.  Don’t ever forget that.  I’m still normal.”

And he was right.  Nothing had changed about his true nature.  He was still Lewis and he would continue to be Lewis.  He was just a modified physical version of the constant immutable kid I love.

Elyse Bruce
Founder and Creator
MIDNIGHT IN CHICAGO