Living Between the Lines

I have never been to a Vampire Ball

My foray into the alternative world of my nephew continues. I have been introduced to Steam punk (in particular steam punk goggles) and learnt why a house bleeds. I have witnessed the joy displayed when a new costume piece arrives or is promised and seen the melt-down that occurs when our actions are misunderstood or we fail to understand his.

I am beginning to think that I should create a whole new category for posts about James. They represent a learning curve for me and my eyes are opened ever wider as I enter the world my late sister dealt with daily. It is a world where disability is not readily apparent. People with Asperger’s tend to have all their limbs and are often highly intelligent. In other words, they are quite normal but for their differences, as are we all.

A few years ago I went to Reading to see my nephew perform in a play called,

“At Home with The Crips” The cast comprised both able-bodied actors and disabled. Asperger’s was one of the lesser disabilities.

The main character had no legs yet managed to jump and run about the stage on his hands so that you forgot his disability entirely, once you had been amazed by his gymnastic prowess. I was reminded of this man when watching the recent Paralympics.

James emerged right on cue wearing a Darth Vader costume and spoke his lines clearly. James’s voice carries well. In costume, his confidence was obvious.

I suppose this play opened my eyes to just what is possible in James’s world.

I have read several books about Asperger’s and the not so well-known, additional problems, peculiar to James. Some of the books have been recommended to me, others I have found. All have something to say about the way a person with Asperger’s thinks. None can make any sweeping statements that will apply to all but there is a general thread that runs through most.

Humour has to be top of the list.

So, it is not surprising that most of my conversations with James give rise to humour. Today is no exception.

Today I have learnt that Saturday, 13th October 2012 is World Zombie Day. Naturally, James is going to London to attend and naturally, I have Googled it.

Here’s what it says about World Zombie Day on the website,

World Zombie Day is an international annual event that grew from Pittsburgh’s first Zombie Walk at Monroeville Mall in 2006 – the site where George Romero filmed Dawn of the Dead – to help all fans of Zombie culture come together in an international effort to relieve hunger and homelessness. More than 50 cities worldwide participate in World Zombie Day, including New York, Pittsburgh, Paris, Hong Kong, Los Angeles, Chicago, Dallas, Seattle, and Tokyo.

I am not at all sure what or who “fans of the Zombie culture” are exactly but clearly, their sentiments are good. After all, what better intention can there be than the one to relieve homelessness and hunger?

James is working on his costume and phoned me to request some cash so that he can buy food at this event. (He obviously intends doing his own bit to prevent hunger) Curious to know what the day involves I read on,

World Zombie Day London takes the form of a pub-crawl through central London. The zombie horde will gather at a set time and place then make their way around a pre-arranged route, calling at set pubs for hour long stops. This year will be bigger than ever! We will be taking in some of London’s most beloved landmarks, throwing a zombie-themed gig in the final pub with bands and burlesque and even a midnight screening of ‘Shaun of the Dead’ at the Leicester Square theatre!

 Ah, so it’s a pub crawl. I hope the city is ready for hordes of the slightly inebriated, un-dead, walking its streets!

I have seen some unnerving photographs of previous events and I asked James if he was actually dressing as a Zombie. He told me, no, he is going as a World War two soldier – of course. Doubtless I will see photographs on his Facebook page.

Personally, I was not as taken by this event as I was by the Steam Punk Goggles – each to their own.

James confided that he is going to the event with his new girlfriend and tonight they plan to put the finishing touches to their costumes. First he needs to buy an old shirt to stain with fake blood. This sounds a romantic pastime.

This world is indeed far removed from the one I have moved in until now.

It is a world where the simplest task becomes impossible,

Me: “Have you cleaned the bathroom?”
Nephew:  “I can’t – there is a spider on the ceiling and I am not setting foot in there until it has gone,”

Me: “Have you cleaned up the lawn after the dog?”

Nephew: “No because it’s really bad for my back to keep bending up and down. Someone is helping me tomorrow. I need to be bent down all the time so someone else has to hold the bag.”

Me: “How’s the cleaning of the rest of the house going?”

Nephew: “OK, but I can’t clean behind the TV because it needs moving and it’s too heavy so it’s pretty dusty behind there.”

Leaving the interrogation about housework for the moment I go back to the subject of his girlfriend.

“We both think we are meant for each other,” he confides, “I plan to propose to her actually, at the Vampire Ball.”

Yes, a completely different world…

I am an Author, wife to one, mother to five and grandmother to six. I live in the English countryside in Hampshire, UK, with my husband and two dogs and am a non exec Director for Glow


  • Andrea

    How lucky you are to have such a colorful character in your life, Deborah. He’s teaching all of us. I had no clue about Zombie Days or Vampire Balls (I’m sure it will be quite romantic to be proposed to at the Vampire Ball). I like James’s spirit.
    Do you ever read Elizabeth Aquino’s blog? Like you, she’s a loyal and valued follower of my Alice stories, and her beautiful posts about her daughter Sophie, who is disabled by epilepsy, can be found here:
    Not every post is about Sophie, but there’s enough there for you to find a kindred spirit, I think, and you may be in need of one as you journey on into this very different world.

  • patricia

    We have the Procession of the Species here in the spring and all my Aspergers friends participate – the organization has been renting a warehouse for anyone to come and work on their costumes and all the artists in town come to assist, but it is the special folks that really make the details come alive. The parade also includes huge puppets on poles and my neighbor has made some world class art.
    Although we are not a huge city we also have a Zombie celebration at all the small breweries in town. I am trying to remember what the folks who do jousting and dress up and re-enact battles in the park in all their regalia are called. Mike likes to go and direct the battles, but he knows I am an introvert and opposed to war of any kind so he doesn’t insist that I attend.

    There is an interesting movie about Aspergers and a couple who get married – I think it is called Mozart and the Whale. The young man is a code reader at Microsoft and also works at the University of Washington. Mike brought it over for me to watch so I would not be afraid of him, and he told me he could not babysit…but he loves my dog! His parents have built an apartment for him over their garage so he can have his own space, but he needs someone to check on him, and he does very well.

    Mike does not like to bend over either and he often falls down when he does? Also Mike’s coach is finding an ipad an extremely good tool – I was impressed

    Very nice post and very informative good to share this information.

  • Deborah Barker

    Having known James since he was a baby, we are more than used to his ways but he still makes us laugh and, at times, cry and reflect on the positives. One of his support workers recently told me that he shows unusual empathy for one with Asperger’s and we know his sense of humour is very quick and witty. I agree, it is good to share information and understanding.

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