Welcome to the Grand Delusion

Feels like that some days

Feels like that some days

It’s been a hell of a year or so. You may have seen me post from time to time on Facebook about some of the crap that’s gone wrong but in case you missed it, there have been major issues pretty much every month or few weeks for 18 months or so both at home and the in-laws house (which I’m responsible for).

  • HVAC, dishwasher, disposal, in-wall oven, washer-dryer, refrigerator, water heater, attic fan, and even the countertop microwave we got to temporarily replace the built-in one, all failed.
  • Roof leaks, HVAC condensate drain, landscape drainage, failed double-glazed windows, and water heater overflow all led to water damage.
  • My truck, wife’s car, daughter’s car, in-laws’ car, motorcycle and even the freaking lawn tractor all needed major unscheduled work.
  • Several rounds of trees falling down. Once it was blight. Another time it was insect infestation. The last time we got so much rain the ground softened up and a whole stand of trees keeled over root ball and all and took out part of a neighbor’s fence.
  • A variety of illnesses and surgeries in the family. At this age every list of possible causes ends with the words “or it could be cancer.”  It hasn’t been cancer in any of the cases but that’s led to some tense weeks waiting out test results.
  • Over the last few months I’ve been pretty sick but since I wasn’t running a fever most of that time I didn’t know it until I was so fatigued and anemic that I only got out of bed to do my professional work and that was about it.

Because we humans are hard-wired to misunderstand probability we tend to think of things with astronomical odds as mere thought exercises.  Academic scenarios that could never actually happen to us.  But if there’s a 1 in 10 trillion chance of something happening, it is equally likely to happen on the first try, the last try, or any iteration in between.  Since we don’t understand that, we also tend to attribute a run of bad luck like I’ve had to karma, divine intervention, or other forces directed specifically at us.  And that’s my problem lately.

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Why I do this

Over at the Autism from a Father’s Point of View blog, today’s post by Stuart Duncan was The day ‘hackers’ told 6 year old autistic children that they should ‘kill yourself’.  One of Stuart’s sons is autistic and when he saw how much bullying autistic kids were experiencing on public Minecraft servers, he set up and now runs an autistic-friendly Minecraft server called Autcraft.

If that was the end of the story, it would still be a cautionary tale about bigotry and vulnerability, contempt and compassion, and ultimately about love and hate.  But that’s not the end of the story.  Not by a long shot.  After two weeks of relative peace, hackers began to attack the site and have been doing so continuously for about three years.  At one point they successfully redirected the site to their own servers and for a brief time kids logging on were told, among other things, that they should kill themselves.

The typical societal approach to bullying defines it as a two-party conflict.  Over the years we’ve developed lots of interventions for both parties–bullies and victims.  For most of us this makes it someone else’s problem.  If you aren’t a bully and aren’t a victim then it’s not really personal.  Except, that’s a fiction.  If you aren’t a bully and aren’t a victim then your role is to define the victim pool available to bullies.

Bullies don’t just pick victims at random. They look for victims they can attack with impunity.  They look for people who are already marginalized because they know nobody is going to come to that person’s aid.  If we were going to rally to the defense of that kid sitting all alone at lunch time, that kid wouldn’t be sitting all alone in the first place.  When we make someone an outcast we give permission for them to be victimized.  We don’t have to say it out loud or acknowledge it for it to be true.

The scope and severity of bullying and hate crimes describes a map of who the social group cares least about and the degree of disdain in which the group holds that person or class of people.

The thing about society is that our ethics are more transactional than principled.  If we intervened on behalf of victims out of a belief that bullying is unacceptable, then it would not matter the character of the person victimized.  We’d intervene simply because it is the right thing to do.  Such people are rare and when they do walk among us we revere them and build entire religions around them.

Unfortunately, most of us practice relative ethics.  In this model, some people have intrinsically more human worth than others.  People high up on the food chain deserve more of our respect and we’ll protect them if they are threatened.  If those at the bottom get hurt, well they had it coming.  Family, friends, peers all cluster close to us in the social hierarchy.  Based on victim statistics, autistics other than family members are somewhere far below.

The less like us a person is, the less interaction we have with them, the less intrinsic worth we attribute to them and the more likely they are to be a victim.  When we consider that the primary indicator of autism is social impairment, it is little wonder that the autistic population is vastly over-represented as victims of violence.  That we consider the autistic kid weird factors into our willingness–or lack thereof–to intervene to stop a bully.

Consider what this tells us about character.  If we intervene out of principle then the character of the victim doesn’t factor into the equation.  That intervention is an expression of the principle that bullying is unacceptable.  It tells us nothing of the character of the victim and everything about our own character. Most people I’ve discussed this with agreed with this assessment.

The next case is a bit harder for many folks to accept though.  If our intervention is situational then the character of the victim still doesn’t factor into the equation. The autistic kid may be weird and socially inept but those are communication impairments and not character.  In fact, the dividing line between the populations of people on whose behalf we would or would not intervene tells us nothing about the character of the individuals in those pools.  It does however quite faithfully reveal a map of our own character.

If that’s true then it means bullying and hate crimes are really not someone else’s problem.  It means we have the capability to act and that failure to do so leaves a stain of culpability on our souls.  It means that victim statistics reveal the map of our society’s character just as our personal rules of engagement define us as individuals.  And the picture revealed isn’t flattering.

When Stuart reported the hackers attacking Autcraft servers the FBI were uninterested.  When he reported it to Mojang, the developers of Minecraft, they too were uninterested.  If the hackers used the exact same methods to attack the web site of a presidential candidate, if they told the candidate to go kill him or herself, I guarantee the FBI would investigate. That they have not and we don’t rally and force them to shows that our enforcement is situational.  Some people are better protected than others.  Autistic children didn’t make the cut.

As a society we’ll intervene in a heartbeat for the concept of children.  Unborn children are passionately defended.  Hypothetical children are just as passionately defended from all manner of perversions real and imagined.  Conceptual kids who exist only as rhetoric have yet to be cursed with the human failings of race, religion, socio-economic class, gender, or disability and receive unending and passionate support of social reform groups and our legislature.

Actual flesh-and-blood children on the other hand are not so lucky.  Once born they are assigned relative worth depending on what they are.  Race, religion, socio-economic class, gender, and disability determine the extent of support and protection they receive from society, or conversely the degree to which they are institutionally disadvantaged.  The question of who they are–their character as individuals–doesn’t come into play until after their relative human worth is already decided,  and when we do bother to factor character into the equation we do so only to diminish someone’s standing.

Addressing this is easier said than done.  Defending a principle sounds simple.  If something is wrong it is always wrong. That takes all the guesswork and judgment out of it.  But sometimes defending a principle benefits people you dislike.  In those times we need to remind ourselves that it is the principle we are defending and not the person.

Most importantly though, once we accept that bullying requires permission of the social group then we can intervene through influencing that group.  We can explain the role of onlookers in providing tacit permission and encourage people to withhold that permission.  We can go from telling people it gets better to actually making it better.  Today.  Right here, right now.

Personally, I direct my outreach through many different channels.  Obviously, writing is a large part of it.  I speak at anti-bullying events and I volunteer at a local elementary school.  I use Donors Choose to direct funds directly to teachers with autistic and special needs kids.  When I find groups working toward compassion-based social reform, I support them financially and with in-kind gifts where possible.

One such group is the Special Assistance Network, a newly formed non-profit out of Florida.  The founder Trish Bowden realized that families dealing with profound disability are most in need of legal protections such as trusts and wills but often least able to afford them.  Not one for doing things by half-measures, she earned a law degree while working full time, then took early retirement from a prestigious and well paying job to study for and pass the bar.  With law degree in hand she then assembled the team who would become the core of the Special Assistance Network.

Among her other goals for SAN was that it have some autistic leadership at the top.  She reached out to me and I’m happy to announce that I have accepted an advisory position on the Special Assistance Network board. It is early days yet and we don’t know what SAN will blossom into but we do have our first client. I look forward to contributing and helping the organization grow.

And although we can’t help Stuart with his hacker problem, SAN is working to address the root of the problem through leadership and example.  The FBI might not care about autistic kids.  Mojang may not care about autistic kids.  Society may not care about autistic kids enough to rally around Stuart and demand equal protection under the law for the Autcraft server and community.  But SAN is willing to stand up and say “We care.  You are important and deserve the opportunity to live up to your fullest potential.”  The hacker activity at Autcraft is a vivid reminder of why we need to take that stand.

When I talk about compassion-based social reform people often tell me I’m wildly optimistic, if they are being polite.  Others simply tell me I’m delusional.  Nothing I work on, they tell me, can ever hope to solve the problem or even make a big dent.  In the end it all comes down to character.  To know the extent to which autistic people are victimized and stand silent is to give assent.  Taking action isn’t about winning or losing.  It’s about saying #WeAreNotThis.  It’s about saying I am not this.  In the end that’s the most important thing any of us can do.



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Panic room

I traveled to Las Vegas today for the IBM Interconnect conference. It wasn’t even close to being the worst travel day ever. Not even in the bottom 10. But it definitely kicked my butt.  I suspect my autism contributed to the level of distress so this is the right blog for this post.  I have on occasion blogged about my bad days just to get them out of my head so I could move on.  Turns out those are the posts that get responses.  Feedback is that it was helpful knowing someone else has the same problems.   Here then is another post in the bad day series.  If you want something more upbeat, head over to The Odd is Silent.

I made it all the way to McCarren airport without a hitch.  During the flight I alternated between wondering what I’d do all alone on a Saturday night on the Vegas strip and trying to get caught up on last-minute work.  The thing is, I never use the laptop on the plane and I should know better than to depart that far from my established routine.  I exited the plane just like normal – Water bottle? Check. Man-purse full of electronics, snacks, medicines, and itinerary? Check. Backpack? Check.  Phone? Check.  Headphones and miscellaneous cables? Check.

Laptop? Didn’t check.

I was a long walk, a tram ride and a short hike away from the gate before I figured it out. I practically ran back to gate, trying not to freak out. Heart racing. A massive cold sweat, except it’s McCarren airport during the day so there’s nothing cold about it. The gate person who went to fetch the laptop must have got to talking to someone because she took a really long time to return. All I could think while she was gone was that they were looking for it and someone had picked up on their way out. I can recover from a lost or crashed laptop but it isn’t cheap, it isn’t quick, and it isn’t something I want to do from the other side of the continent.  Definitely not the way to start a conference at which I expect to line up half my business for the year.  Eventually she returned, laptop in hand, and I collapsed in relief.  I had to take a seat for a few minutes and just breathe slowly with my eyes closed.  Eventually I got up and headed a bit unsteadily toward the tram and baggage claim.

I’m here for 6 days and anticipating bringing back some new clothes, including an #ibmchampion shirt, and maybe some books, so I have the large suitcase.  I figured it would be spinning around the carousel all alone by the time I got there but instead I discovered the baggage claim area is under construction and half the carousels are down. Mine was swamped with 3 planes worth of people and one side was blocked by construction fencing.  The thing was mobbed.  I hate crows on my best days.  In my present condition, this situation seemed lethal.  No way I was going to wade into that throng so I hung out off to one side and waited.

For every person who picked up a bag, it seemed two more showed up. About 1/2 hour after the first bag appeared the crowd was thick as ever.  I watched my bag orbit the carousel several times, unable to get close enough to retrieve it. After 40 minutes and no end in sight, I waded to the back of the crowd. There was a slow turnover as the people up front collected their bags and left, allowing the people in back to advance.  As people moved forward, new ones refilled the line from behind.  The mass of us moved slowly forward like a human glacier. By the time I made it to the front, I’d seen my bag complete 4 more orbits. There was no maneuvering or leaving the way I’d come in.  I was being shoved from all sides except the front so I closed my eyes, gritted my teeth and tried to ignore the people pressing in around me. My earlier purgatory of panic at the gate now seemed like the good old days. I stopped counting signs of stroke and heart attack that I was having and started counting the ones I wasn’t having. It was a smaller list.

When I finally made it to the front, I’d seen my bag pass by so many times I knew exactly when to expect it.  That didn’t help.  Other bags had come down the chute and mine was at the bottom of a small pile.  Normally this isn’t a problem for me but people were pressed in on me from all sides.  Less space means less time to grab the bag and fewer places to put it.  Instead of lifting the bag off the carousel, the bag lifted me onto the carousel, jostling several other passengers.  I looked like the worst-ever wet t-shirt contestant and a couple of the people I bumped into reacted with disgust when they figured out the something-wet they felt was me.  I got back up and waited for the next pass of the bag.  Fortunately, some of the people I’d knocked into fetched their bags and left so I didn’t have to feel the contempt in their gaze while we waited.

When I finally retrieved my bag I fought free from the crowd, made my way to a quiet corner and collapsed into a chair hoping to make my impending death a bit more comfortable.  I really wanted to hear my wife’s voice but also didn’t want to distress her.  Not that I could have operated the phone at that point since my hands were shaking.  So I just put my headphones in and turned the music up.  I find that if I can sync the music up to my mood, I can shift my excitement away from whatever is distressing me.  Once I’m more focused on the music than the problem I then ratchet down the panic by picking successively calmer tunes.  Triumph. Blinding Light Show.  A song about a light show so intense that the entire audience dies during the performance.

    And the blind shall
Lead the sighted
As we lose the candle glow
No one knows tomorrow
In the blinding light show

I don’t know how many people attended the Blinding light Show but after sacrificing all of them, I felt better.  Best of all, I felt drier.  It may be hot in McCarran but it’s dry as a bone.  I collected my things, queued in the nearly-nonexistent taxi line for 5  minutes and after a short ride finally made it to the hotel.  Finally, I thought, I can unpack and pass out on the bed.

Which was an excellent plan, right up until the moment that it wasn’t.  This is Vegas.  I expect the rooms to be on the far side of the casino from the front desk and they were.  I expect to swim through indoor smoke as thick as pudding on my way to my room, and I did.  I expect the room to be at the farthest end of a long hall appointed with the most luxurious carpet that feels great under your feet but holds onto your luggage as if it has tentacles, and it was.  I expect a room with an adjoining door to have a deadbolt – and it didn’t.

Apparently, the management of the Tropicana (a Hilton/Doubletree property) felt the deadbolt was more security than their guests needed and removed it.  The only thing between me and the guests in the adjoining room was a hollow-core interior door, mounted to a foam-core door frame, and a simple closet-quality latch.  The kind you might have on a pantry or laundry closet door.

In fairness, when the door is closed, the guests on the other side have no exposed latch or knobs to pick.  All they see is trim plates.  And that might be OK if any of the components involved were sturdier.  Usually the door to an adjoining room is comparable to an exterior door, possibly even a fire door.  The door frame is usually either heavy steel or solid wood.  The door hardware usually includes a deadbolt because the kind of latch that springs in to allow the door to close without turning the handle is easily picked.  Usually the door hardware is comparable to that of an exterior door.  None of this was true in this case.  I’m sure the hotel doesn’t have problems with this setup or else they wouldn’t allow it to exist.  At one point the door did have a deadbolt and someone made a deliberate decision to replace it with trim plates.  But after nearly losing my laptop on the plane and my life in baggage claim, no way I’m unpacking into this room.

The clerk who took my call was gracious enough but a bit clueless.  He said he’d call me back because he needed to check with someone.  When I asked what for he said he wanted to see if this was a standard feature of the Bungalow suites.  Wait, what?  A near total lack of security might be a feature?  I explained that regardless of the answer the room wasn’t acceptable so he moved me and gave me a $50 dining credit.  That was a welcome consolation gift since by now I was tired, hungry, cranky, and exhausted.  I picked the pasta thinking I’d be able to get two meals out of the credit.

When dinner arrived it totaled to $48.  For a $20 dish of pasta.  I know they tack on delivery and a gratuity but this seemed impossible.  Sure enough, it was.  The prices on the bill were higher than those on the in-room menu.  My server apologized and promised to make an adjustment but didn’t offer to add additional dining credit.  I guess that’s reserved for managers and the Front Desk but at least he didn’t try to squeeze me for even more of a gratuity than they add on automatically.

The pasta was good.  So I have that going for me.  And I’m in Vegas, surrounded by casinos, and I seem to be running a deficit of good luck.  The way I figure it, I’m due about now.  I’ve locked all my cash up in the safe except for $20 which I’m taking downstairs as soon as I submit this post.  I’m going to blow that entire $20 – no more and no less – on quarter slots.  If my theory is correct, my good-luck deficit will correct itself and I’ll take all my winnings back to my room, throw them on the bed, and roll around in them like Scrooge McDuck.  There’s a selfie you don’t want to see.  Or maybe I’ll just lose $20.  Either way it has to be better than the trip here and right now that’s all I really care about.   Wish me luck.

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All that in 5 seconds?

My post Google Male over at The Odd Is Silent is a stream-of-consciousness description of my reaction to a bad Google Voice translation.  It’s been polished up a bit and the multiple parallel trains of thought serialized into narrative form but it’s faithful to the actual process.

On reading it Morag asked “How can all that go through your head in 5 seconds?!”  I don’t propose that the answer to that question is entirely due to my autism, but I do suspect it is at least strongly influenced by it so I’m responding here.

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Who am us anyway?

The post Why “High Functioning” Autism Is So Challenging over at About.com’s autism section is a more comprehensive and yet more concise write-up of some of the same ideas I’ve covered in past blog posts, especially the “but you don’t seem autistic” themed posts.

I have all of the issues mentioned to some degree or another but can usually do a good job passing. But not always. Last month on my first week of a new consulting engagement my client’s project manager said there was a “coffee social” going on.  He invited my colleague AJ and I to walk down the hall for a chat and to get some free coffee. I don’t drink coffee but I’ve learned that when the client wants to chat you go chat.

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Can I just be a functioning autistic?

Dani over at Autistic Academic recently posted Why This “High-Functioning” Autistic Really Wishes You’d Shut Up About High-Functioning Autistics.  It’s a well reasoned and provocative post that might make you reconsider how you think and refer to differences in others.

I highly recommend giving the post a read but some of the best parts are in the follow-on comments.  I’ll take some liberties and quote from one:

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I hope it’s casual day

Posted on the inside of the front door at my house is a list of all the things I need to remember before heading to the airport. I’m laser focused on some things like computer security, which is good because that’s my job.  But at the basics of life, I’m totally scatterbrained.  My executive function never was much good and I have to resort to building rigid routines like posting lists on the door in order to compensate.

Many of the items are on the list because I have at one point gone off without them.  If there’s one thing my wife hates, it’s overnight shipping a laptop power adapter to me.  she did it once, then added it to the list.  If there’s one thing I hate, it’s seeing how much it costs to overnight ship something to me. When I saw the bill, I invested in a docking station so I never have to use the power cord while at home.  If it stays in the backpack, I can’t leave it behind.

My alternate strategy is to keep multiples of most important things in my backpack in case I leave one behind.

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