Diary – Sydney Trip

So I went to Sydney *hugest grin eva!!!*

I love to travel.  Since becoming disabled and having NO money, the whole travel thing has just gone out of the window.  I wanted to take my kids travelling all the time, but it’s just not possible 😦

So I was TOTES excited (and still am, to the point of talking like a teenager from a b-grade movie), to be asked to go on an SBS Insight show about empathy.  An associate producer posted on FaceBook looking for people to talk about empathy.  I wanted to ensure that the show considered that there is more than one type of empathy, particularly given the damage Simon Baron-Cohen has done the ASD community with his “work” on Autism, so I mouthed off a little.  The associate producer ended up calling me and we had a good conversation – I explained how I have too much emotional empathy (and displayed this by talking about a past news event and sobbing like a girl and shaking like shit, even though it was ten years ago and had nothing to do with me at all!).  I also explained how I have not enough cognitive empathy – that I don’t understand social cues in the moment etc.  It was a great conversation and she was really nice.

During the conversation, I talked about the kids and how Quinn was going to be assessed again for ASD under the DSM V, and she asked me to email her and let her know how it went.  In the spirit of our conversation, I told her that this was a perfect example of lacking cognitive empathy – I had no idea at all, I mean, I couldn’t even hazard a guess, as to whether she was seriously asking me, or just being polite lol…  She assured me she really wanted to know, so I did email her when Quinn received his diagnosis.

The show ended up taking a turn toward the psychopath edge when they scored a high profile psychopath to come on the show.  Still, they wanted to know if I had any questions (I had HEAPS), and would like to come down to ask one.  Sure!!!  Pressure if off me a fair bit if I just have to ask someone else a question, right? 🙂  Plus I got to fly again, and be on TV (which doesn’t thrill me per se, but I am all about new experiences and living life to the full, so who wants to pass THAT up – especially since I have been asked before to appear on this show and couldn’t make it because of my disability/money/lack of notice at the time).  It was an opportunity to LIVE, not just exist and damn sure, I wasn’t going to pass that up!

Until last week, the whole thing was still all a bit iffy.  I mean, I had an email saying that I was invited, but still, until I get confirmation that they have booked my plane, I’m still going to assume there may be a last minute change.  Just in case there is a last minute change.  Then, last Friday, I received an email with my formal invitation.  That was enough for me.  Friday and Saturday I was excited and nervous.  Sunday, I was a mess.

It started with hot flushes.  I needed air.  I couldn’t breathe.  I needed to be in the fetal position.  I needed the air conditioner.  I needed to lie down on my bed.  I needed to cry.  I needed a hug.  I needed to fly far far away…

Thankfully I had some Diazepam left from another time, so I took a couple and managed to get a little sleep that night.  Monday, I woke up, and while I couldn’t do much other than distract myself with Terraria (a computer game), and check out the flight and accommodation details which came through via email, I went back to feeling a normal type of nervous and excited.  That lasted through to Tuesday night, when it hit again.  At 3:30am Wednesday morning.  At 4:30 I took some pain killers (I realised I had missed my dose the night before, which wasn’t helping my physical state at all), and managed to doze for an hour or so before I had to get up to fly out.

At the airport, I said a quick goodbye to the boys (parking fees are a bitch!), and got in line to check in.  Only to be pulled out of line a minute later and put through the priority line.  I got my ticket, checked my bag in and headed over to security.

I haven’t flown in years and certainly never while in a wheelchair.  I had no idea what the hell I was doing lol…

They put my bags through the scanner, and got me to go through the gate to the side of the metal detector.  A lovely woman came out and explained that she would have to pat me down.  No worries, I thought.  She offered to take me somewhere private, but I declined.  It’s not like I was being cavity searched – it’s just a pat down.  I got my bags back and then she took me to the departure deck.  I was too nervous and excited to write or even really people watch.  I was going to fly again!!!  I couldn’t believe my luck.  I think I sat there for an hour just simply not believing my luck lol…

 

Brisbane Domestic Airport

Brisbane Domestic Airport

 

Half an hour before we were due to depart, they had me wheeled down to the plane and transferred me to my seat.  Luckily, I was the only one in that row, so I ended up with a window seat!  I watched people get onboard and because it’s a small plane, that included people in business class, who had bigger seats but otherwise were in the section as the rest of us.  I could have sworn I saw Penny Wong (politician, major player), get into a seat in business class.

“Surely not,” I thought.  Surely there is some unwritten rule that politicians must fly QANTAS, not Virgin???  Still, even the thought of it made me giggle with pleasure – I don’t necessarily agree with her party, however I have always liked her quite a lot.  I’m not one to judge to hasty assumptions (usually), so decided to not believe it was her until I saw a travel itinerary in the media somewhere or something.

Ok, so I just don’t like being wrong about stuff.  Sue me.

Between the nerves and the tiredness and the everything else, about half way through the flight, the urge to pee became somewhat overwhelming.  I asked the steward to help me get to the toilet.  She held my hand to steady me on the unsteady floor, up to the business class toilet because it was closer.  To save putting my hand on the back of potentially Penny Wong’s chair, I changed hands with the steward, and nearly fell over.  I must of gasped or something, because Penny Wong potential turned and looked at me and asked me if I was alright.

And that was when she stopped being potential.  The voice matched too.

I said “yes, thank you ma’am”, unsure in that moment how to properly address her, and continued on my way.

Then I peed about three feet from one of my political idols.

Plus I forgot to lock the door, so thanks to the steward for picking up on that and doing it for me!!!

Back at my seat, I couldn’t help but grin like a Cheshire cat, simply delighted at the fact that Penny Wong was on this flight.  Not only was I flying, not only was I going to be on television, not only was I ALIVE and actually living a life instead of just existing, but oh my fucking god, Penny Wong spoke to ME!!!

And she had the kindest of eyes.  She meant it.  And she wasn’t being a politician – I had given no indication that I knew who she was before the “ma’am” came out.

On the way in to Sydney, it was fairly clear, and I had the best view ever of the Sydney Harbor Bridge and Opera House and the whole area.  Sadly, we weren’t allowed to have our phones on at this point, so I couldn’t take a photo 😦

After waiting for everyone to disembark, the crew got me off and into an airline chair.  Apparently mine hadn’t been security tagged, so I couldn’t get it back until I got to baggage claim.  A lovely woman escorted me there however, and helped me get settled and get my backback on my chair.  She took me to the taxi ramp and handed me over lol…

It was a normal taxi – I didn’t want the fight of trying to get one where I didn’t have to move (something I would regret later when the pain hit).  The guy was not impressed that not only did he have to screw around getting my chair in the back, but I was also just popping over the road to the Stamford Plaza Hotel, his second crappy fare in a row apparently.  Which was something he made no attempt at hiding.

On arrival at the hotel, the concierge helped me up the ramp, and after checking in, helped me to my room.  I had a nice view of the pool.  I called my husband after having another panic attack complete with hot flushes, took some pain killers, thought about eating and decided no way in hell, and had a sleep for a couple of hours.  Then I woke up, and got ready to go.

Thankfully I packed a couple of different outfits because on putting on my first choice, I decided it was a really bad look after all and went for my second choice, which turned out to be great.  At least, it turned out to be great in the comfort area – I have no idea how it looked lol, and won’t until the show airs.

I got a taxi from the hotel to the SBS studio.  The taxi driver had a wager with me as he was strapping my chair in – he bet that I couldn’t answer a question correctly.  The bet was my fare – double or nothing.  The question?  Why do taxi’s strap the wheelchair in?

Thinking at first that he may have been over people making a big deal about it or something, I said the correct answer – so that the chair doesn’t fly into the back of his head if there’s an accident.  I lost the bet.  We went double or nothing again.  This time I said so that the trip is slightly smoother for me.

Hey, I was nervous ok?  I wasn’t at my best.

The answer, of course, was so that I can’t run out of the fare.  I told him that my husband would probably be very disappointed that I didn’t know that first up lol…

We had a great time on the way to the studio, joking about this and that.  When we arrived, he gave me his number so that I could call him to go back afterwards.  Knowing it was a slow night and given how great he was, I told him I would.  He was also great when, not realising how cab charge cards worked, I gave him the six that I had.  I thought that there would be a predetermined amount set on them.  Apparently not.  He handed all but one back to me, explained that they were like credit cards with no set amount, and to only ever hand over one at a time.  He was such a sweetie 🙂

Now, SBS doesn’t have ramp access.  Which is something I may decide to care about at a later date, but for now, I’m not going into how pathetic that is.  So again, this guy went above and beyond and wheeled my fat arse up the rather steepish driveway to the door, and then waited to check that I was in the right place!!!

I waited in the lobby with a few other guests and a few other invitees until they took the invitees back to the green room.  Which isn’t actually green (though having been a host of green rooms before, I knew how they worked), or in this case, even a room, but rather just an area in a much larger office environment.  It was a little disconcerting seeing a normal office environment with cubicles etc, and all these people walking around that I have seen on television lol…  There were the usual snacks and non-alchoholic drinks available, and the associate producer went around to everyone and made sure we all knew what we were doing.

During this trip around, I noticed on her clipboard that she had the basic layout of the show written down, and I noticed the name Simon Baron-Cohen.

Now, most of my readers are going to know what this would have meant for me, however please bear with me guys – I am going to explain for those that don’t.

Simon Baron-Cohen is a UK Professor of Developmental Psychopathology at the University of Cambridge.  He is the Director of the university’s Autism Research Center.  He is also the author of this research paper – Does the Autistic Child Have a Theory of Mind?  This is a subject that has caused considerable concern in the ASD community.  The topic then links to empathy, and the assumption that people with ASD do not have empathy.  Indeed, I have seen papers that state there is little difference between a person with ASD and a person with psychopathy.

Thankfully the internet came into being, and people – adults – with ASD started coming together and we started talking about empathy.  Parents of children with ASD started talking about empathy.  Other researchers started talking about empathy.  And we realised that not only do people have empathy, but that we have way too much of a particular type of empathy – emotional empathy.

Emotional empathy is felt when you feel what someone else is feeling.  If someone is sad because they lost their cat, then you are sad with them, because they lost their cat.  You feel their pain for yourself.

The other type of empathy (or at least, other main type of empathy), is cognitive empathy.  Cognitive empathy comes into play during most (if not all) social situations – it is the voice that tells you what to do socially.  Is it time for you to leave now?  Is it time to change the subject?  Is it appropriate to bring up this topic of conversation?  That is cognitive empathy, and people with ASD have a lot of trouble with it.

(If that doesn’t really explain it for you, there are heaps of resources on the internet that explain it in more detail.  I suggest you read a variety of views however, as it is a topic that is still defining itself).

Simon Baron-Cohen has sort of stopped saying that people with Autism lack empathy, or theory of mind, and is starting to choose his words more carefully.  It is still unclear where he stands exactly these days, however it is certain that he knows he is in huge trouble with the ASD community for demonising us in the first place, with research that most undergrad students could poke massive holes in.

Lack of money is not a good enough excuse to do crappy research.

In short – Simon Baron-Cohen is the reason that when someone is being a bitch, someone else will presume that means they are Autistic.  He is the reason that Autistic and Arsehole mean the same thing to a fair whack of the community.

He also speaks of “everyone being on the spectrum” because we all have Autistic traits.  This is not only incredibly incorrect, but it’s also harmful to the Autistic community in ways that are too complicated to go into here, however again, Google can be your friend if you want to know more on this.

The man asks the wrong questions and makes the wrong assumptions and basically makes a lot of money being an Autism expert when most people with Autism think he’s an idiot.

Don’t even get me started on his Autism Spectrum Quotient Test.

So I was a whole range of emotions when I saw that they were linking him in to the show via satellite.  I was not surprised, given the work he has done on empathy.  I was angry, because he passes as an expert when he is in fact, a douche.  I was curious as to what angle the producers were planning to take.  And I was nervous, because while it had seemed like the show had taken on turn towards the psychopathic, here was an Autism “expert”…

And as far as I knew, I was the only person there who actually had Autism.

I had thought of doing some research before going on the show – hone my knowledge in all things “empathy”, particularly in relation to ASD and empathy.  However I didn’t, because my memory is nearly non-existent on a good day, and worse under nervous conditions.  I thought that doing research would only stress me out more due to there never being enough time to “finish” – the more I read, the more I would know how utterly unprepared I was.  And I was just too nervous to do think.  So I passed, choosing instead to play the “average joe” if required – “Oh, I’m not an expert, but this is what I think based on personal experience” type thing.

Curiosity calmed my nerves a bit.  I only have so much RAM in my head and my processor is only so big, and curiosity is always going to win over nerves when it comes to processor usage lol.

They seated me first so that they could get my wheelchair in and make sure I was ok.  They forgot to ask if I could actually transfer lol – thankfully I could and they didn’t have to rearrange the set an hour before taping!!!

A few other people came in to be seated and they started miking the invitees up.  I had a mike.  That was a bit more of a nervous hit as reality started to set in that this was actually happening!!!  To me!!!  I mean, I’m just me.  Rural girl.  No money.  Few skills.  Fewer prospects.  Just me.  But here I was, getting miked up, and doing a sound check.

I haven’t watched Insight for a while.  I had to stop watching normal television as it was too depressing.  The set has changed.  And even if it hadn’t, I don’t think it would have looked anything like what I was actually seeing.  There were way more lights overhead than I expected.  I mean, I expected a lot, but not one every square foot.  And it seemed darker and more normal than the clinical look the show actually has.  That turned out to be a good thing I think, as it was more comfortable and laid back than I was expecting.

The chairs killed me though.  I was sore from the start and towards the end, I was fighting the urge to sink to the floor and get in a more comfortable position.  Plus, I need to crack my jaw by opening my mouth as far as it can go every half hour or so to keep it from throbbing too badly, but because I never knew when the camera was going to be on me…  OUCH!!!  Those who know me will be able to tell when it was getting too much.  Maybe even those who don’t…

Jenny came up to me and introduced herself.  We exchanged pleasantries and I asked her *if* it came up and was appropriate (still based on empathy), could I ask Simon Baron-Cohen a question in relation to Autism, rather than psychopathy.  She told me that they had done a show on Autism and asked if I had seen it.  I said no, and she said she would get the producer to send me a copy.  I took this as her way of being polite but firmly telling me “no”.

Anyway, we had the usual warnings beforehand – don’t look up at the mikes or your mother will see up your nose on national television, and for goodness sake, turn off your phones!!!  One guy must have missed the last warning, as his went off during the show and I’m still wondering if they will cut that out or not.  Jenny was not impressed lol…  Her face gets similar expressions to mine 🙂

It was also explained that the show was different this time, as they had a guest on – Jim Fallon.  There would be an interview style in this show more so than others, however we were encouraged to ask questions at any time still.  I’m not sure if people were too nervous, or just enthralled, but nobody did ask questions until Jenny started asking us to.

This guy amazed me.  I hadn’t spoken to him personally in the green room, but I had heard him joking and he seemed like a good guy.  The hair on the back of my neck didn’t do anything, and they are pretty accurate when it comes to people.  He didn’t scare me.  He was happy and fun.  He also had a GREAT story!!!  I wished I could get inside his head and know what it feels like to be him.  I can think of at least two girls I’ve known very well who are exactly the same lol…  They play games just because they can and it doesn’t really occur to them (or they don’t care – it’s hard to really tell which one it is), that the games they play actually affect other people, sometimes very much and very badly.  They don’t set out to hurt people, but they just don’t know or care that they are in fact doing just that.

Simon came on the show then, and basically told Jim that he didn’t believe he was a psychopath, but that he thought he had Aspergers.

I’m not going to go into details – for that you will have to watch the show 🙂  But I will say that it’s quite possible that the camera will show me rolling my eyes several times *grin*.

Regret is an emotion I do not like very much, so I try to live so that I don’t experience it too often.  I do not regret not telling Simon to fuck off when he was simplifying ASD to the point that a five year old could have given it more parameters.  I was brought up to be polite, and I was polite.  That isn’t to say that since the show, I have rerun certain parts in my head and done things differently 🙂

And each time I rolled my eyes, there was Jenny, looking at me, and I swear, trying not to giggle.  She knew.  She knew the whole time.  She knew what he was going to say and she knew how I was going to take it.  I was wondering how they were going to use me, and know I knew.

I have a lot of respect for that lol…  It was well played.

Toward the end, I made it clear that I did not believe that Jim had Aspergers.  After speaking to him at length after the show, I haven’t changed my mind.

Once the show ended, we were de-miked and they brought my wheelchair back to me.  Jenny came over and told me I was articulate and did a great job.  I felt like I fumbled my words and wasn’t at all articulate, but I’ll take the compliment, because it was given by one of the smartest and most successful women I’ve ever met :).  Jim Fallon also came over to speak to me.  We ended up in the back room where SBS supplied drinks and nibbles for us to wind down with, and we chatted for a while with some of the producers (who were all incredibly talented and young!).  Jim invited me to email him to speak further, and I certainly will be!!!  He is amazingly intelligent and I love how his mind works!

When it was clearly time to leave, one of the producers walked me out and offered to call me a cab.  I text the guy who brought me there and went outside to have a smoke while I waited for him.  I figured I deserved a smoke after that, and I had bought the remains of the last packet I had kept for such occasions.  The rest of the producers came out about ten minutes later – still no sign of the taxi – and they put me in one of the taxi’s they had ordered.  It was really very sweet of them – they all spoiled me rotten 🙂 ❤

SBS at Artarmon, Sydney

SBS at Artarmon, Sydney

It blows my mind that I got to speak to Penny Wong.  It blows my mind that I got to have a short conversation with Jenny Brock (who also spoke to me briefly after the show).  It blows my mind that I got to meet so many awesome and talented people.  It blows my mind that someone like Jim Fallon wanted to talk to ME, when he could have wrapped anyone there around his finger.  It blows my mind that Simon Baron-Cohen referred to me – he will probably watch the show and know who I am soon enough.  I may not respect his intelligence or work, but I do respect his position.

It also blows my mind that everyone asked me what I did for a living.  In QLD, I get abused for ripping off the government in supermarkets by strangers who have no idea who I am or how I exist.  In NSW, people assume I earn a living, regardless of the chair.  At first I was shocked and mumbled I was on the pension, and then I remembered that I am a writer and they don’t need to know that I don’t get paid for it (yet).  Until I saw the smog the next morning, I even considered moving there for a while, just to have more of that assumption of competence.

It blows my mind that I had the balls to do this, even after how I felt on Sunday.  It blows my mind that I, of all people, got to have this experience.  It excites me that this may mean more things to come.  It scares me that this may be my last big thing too though.  I understand that I could use this to gain momentum and start writing articles for more prominent outlets, but I have no idea how.

No matter what happens in the future in regards to my writing and advocacy efforts, I do know this – things have to change around here for my family.  I have been busting my arse to get Nicky to do his schooling, but I can’t do it alone.  So either the government is going to have to fund disability services or my gifted kid is going to go without a formal education and screw their laws and paperwork!

I am living my life my way.  My family is going to do what is right for us.  It is an old song that I have sung many times before, but seem to often forget when I get caught up once again in what “should” be.  I have remembered again.  And again I have to come to the conclusion of “fuck that shit”.  Health and education is important – very important – but I can’t personally change our circumstances when it comes to those things.  I can’t earn a living just by willing it.  I can’t make the government provide services.  I CAN accept what it, and do the best I can with what is left.  And if a lack of education means my kid grows up to also live on the pension instead of earning a living, then so be it.  My job is not to stress and make myself sick with worry over things I can not change and in turn, make him sick with worry about things he can not change.  My job is to teach him how to have fun living on the pension if it comes to that.  To take any little thing you can, and make the most of it.

And I am going to try and get out into the world as often as possible.  It is fun out there.  I just have to find an area that is mostly accessible…

This experience was one of the highlights of my life.  And I’ve been fortunate enough to have had quite a few experiences 🙂  Thanks Amanda.

And Brooke – I’m not sure if this really answered any of your questions lol… but if not, ask, and I’ll answer them as best I can 🙂

(Please forgive any errors here – I have typed this 4800 word effort in only a few hours with kids in the background and while still completely buggered from it all lol.  We had to go to Brisbane yesterday again for a day at Nick’s school and everyone is really whacked out here…)

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Autism, Disability, Ehlers Danlos Syndrome, Mental Health, Personal
2 comments on “Diary – Sydney Trip
  1. shehasathree says:

    omg, that’s amazing! Well done, and i’m really looking forward to seeing the show.

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Pissed off since 1995. Mad as a hatter since way before that.

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