Disabled Life

My phobia

 

Ornithophobia is a type of specific phobia, which is an abnormal and irrational fear of birds.

I am ornithophobic that means I have a fear of birds. It’s a little more complicated then that. There is not a specific thing I am afraid of. Logically I know the bird probably won’t do anything, but if it’s anything bigger then a sparrow I freeze. I’ll wait for people to be nearby and then proceed. Pigeons, seagulls, magpies, swans, pukeko’s ducks, chickens, budgies I hate it and the closer they get the worse I am.

It was much harder when I was young and couldn’t verbalise what was going on. So people would make basic assumptions. I spilled a pot of chips once during a school trip, seagulls all around me and I panicked. “Oh he watched The Birds, it’s just a movie.” I hadn’t actually but that was good enough explanation for some people.

I’m selective about telling people because the inevitable “What do you think will happen?” comes up.  I don’t think anything will happen. The best way I can describe it is that my body goes through the chemical reaction of fear. Like I said I know nothing will happen, but I can’t help it. My mind starts racing, I don’t scream but I am looking for ways around the bird or for something to startle them so they fly off.

When we filmed Rollmance my producer got us The Pumphouse as a location. There was no way around it. The Pumphouse is home to a large number of swans that aren’t afraid of people. I told him I had a phobia and it was serious. We put someone on bird duty. I watched The Birds the night before, I handled it and while it would seem that is my worst nightmare it had no effect on me, it’s a film and I know it’s history. I have friends who perform at The Pumphouse and now a days I can’t go alone. I want to support my friends but I can’t handle the level of fear there. If a group is going I’m fine but on my own, no way.

A seagull got it’s head stuck in a box outside work once, I had gone down 3 flights of stairs and I was tired. So I waited inside. The bird kept squaking and playing with the box. I walked  back up the stairs and got an editor to come down and get rid of it. It was embarrassing.

The worst was inside a food court. I was seated with a friend who knew about my phobia but didn’t take it seriously. A pigeon flew on to our table, my friend started laughing until he looked at me, I wasn’t making a sound, I can’t remember much but he told me later that he had never seen anything like it. He got rid of it quickly because I looked terrified.

There is a photo of me as a baby in hospital, I had a bit of surgery back then,  there is a set of plastic birds above me. It seems I associate birds with surgical pain.

My phobia doesn’t effect my day to day life that much. But it is an annoyance when it does.

Standard
Disabled Life, Film, sport

Martin Crowe

Originally this was a facebook post but I wanted to share the story with more people and expand on it a little. There was no media coverage of this at the time it happened.

One story I have about Martin Crowe. Craig Julich-Serventy and I filmed an interview with him for a producer (Footage now non existent as the producer took it and never called back.) His brother Jeff and I set up a cricket game at Northcote college. The interview was about the Cricket Max concept that they had devised.

Northcote was where I had captained an indoor cricket team and a social cricket XI, the social XI was also the only XI, I sometimes thought of it as “The first XI that turned up.” Being disabled and captaining in cricket I had a bit of attention from media and was able to turn that into something positive for a small school, there were 400 plus when I went there. This was only a few years after I left.

Jeff rang me to say that Martin would be coming. It was a third form vs fourth form cricket game. No media there (apart from Craig and I with a faulty camera). The two brothers played against each other (Martin 3rd form, Jeff 4th form). Martin had retired and his knee brace was almost space age. I remember him smiling during the game and each kid that got to bat with him or bowl against him was having the time of their life. The school setup a commentary table and two students called the game. As Martin batted he sometimes let the ball go through and pushed for singles and then crack! He belted the ball into a wall. It was an incredible show he and Jeff put on, It was quite amazing to see how much joy he brought to everyone involved. His enthusiasm for cricket was still there and I am glad that I got to see it first hand.

I can’t tell you who won but I don’t think that’s important.

 

Standard
Disabled Life

A bit of a ramble about PG.

I’ve been ill for a bit so I wasn’t able to write as medication makes stringing sentences together a bit awkward, sorry.

A lot has happened. Mostly NZ broadcaster Polly Gillespie let out all her dislike of the disabled. I won’t link to it, you know how to google. Bullet points though.

  1. Polly hates it when disabled people misuse their parking card by letting able bodied people  go to the shops while they sit in the car.
  2. . Polly needed to desperately go poo, so she used a disabled toilet. A disabled man yelled at her because he needed to go toilet too. Polly points out that she is legally entitled to the toilet.
  3. Polly wanted to punch the man in the wheelchair…but she didn’t. Saint Polly!

On the first point. Polly is neglecting the existence of invisible disabilities. This can mean a lot of things. The best example is a chronic pain condition. If you see someone with the parking card, they have access to the space, leave it at that. Maybe they are misusing it but you really can’t judge it by looking at them. Please just leave it because if you’re wrong you’re going to make their day much worse.

The second point…F**K OFF! Yes legally you have a right to the toilet. But morally come on. Look legally you don’t have to stand for pregnant women or the disabled on the bus, you don’t have to make way for them or assist them in any way. PEOPLE DO IT BECAUSE IT’S THE RIGHT THING TO DO!

The man in the wheelchair shouldn’t have behaved the way he did either. Not because of invisible disabilities necessarily, Polly G has a level of notoriety that means if she had a disability you’d know about,  he may have recognised her going in. My own attitude is just to wait till the person comes out. If they shouldn’t have really used it, they know and a level of guilt means they will be a little more choosy next time. I’m fine with pregnant women using them or people with broken legs. A friend of mine when pregnant used the disabled toilet at work because she needed the handrail to help her stand. It’s fine no need to explain yourself 🙂

Disabled people though do REALLY need those toilets for a variety of reasons. I never needed them till 4 years ago. Because of my kidney issues I now need to use a small device when going to the toilet.I don’t really want to go into it too much. But I need to clean the device after use and the less transporting it around the less chance of infection or hospital.

Locks on disabled toilets from the outside is already in use to prevent “nefarious activity” asking for permission to use these toilets is embarrassing and can have the negative side effect of dissuading some disabled people from going out.

On the third point. Where do I mail your medal Polly?

This actually went longer than I intended and Sarah Wilson has a far more elegant style than mine, so if you’re interested and what to read a better breakdown of the issue here please read her blog. Here’s a link

http://www.writehanded.org/blog/2016/02/08/get-a-clue/

I would have written this sooner but I was quite angry and on antibiotics, you understand I hope.

 

Standard
Disabled Life

The cost of my disability.

I have cerebral palsy. I have had it since birth. It’s not deteriorating, I’m not getting worse, I’m not getting better. I’m at a level where I can handle it and it’s not so bad. It effects my hands, in a minor way, and most noticeably my legs.

When I was younger they tried to correct it with surgery. I ended up in a wheelchair, I took a year off everything and made myself walk 1km a day.To get back on my crutches.

I used to qualify for what is called a disability allowance. It helped pay for shoes, crutch tips and a gym membership.

Shoes are one expense people don’t think about. I go through shoes every 3 weeks. Because I kinda drag my feet and they tilt to the side. I try to keep it to $30 or less. I could try a more expensive brand but I have had shoes that barely lasted a week. If I spent more and that happened it would be quite depressing, although worth it for all the people that give me advice on shoes, currently I rock a $12 pair from The Warehouse.

Crutch tips, This is a fluctuating cost. It currently costs me over $18 a week. I am changing at least one tip a day. Later when it gets cooler I’ll spend $18 a month.

The gym. This is my most important expense and if I wasn’t disabled maybe I wouldn’t go, to be honest I think I’d just play sport and do a bit of jogging for fitness, It costs me $251 for 6 months at the gym. I do get subsidies ed $300 every 6 months. Beyond that I spend $35 a fortnight on a session with a trainer. It’s worth it as it makes life easier long term.

Currently I am employed so I no longer receive benefits. The parking permit I have costs $50. I do have a total mobility card provided by the Cerebral Palsy society. That halves my taxi fares (in cabs that accept it, Uber doesn’t seem to) and I have vouchers that lessen the cost. A $40 fare actually ends up costing me $10 in actual cash.

A lot of my costs come about because I’m active, really active. I burn through shoes and crutch tips because I am moving a lot more then other people on crutches It has been a source of complaint for nurses who come round to check on me (for my kidney condition I used to need regular checks at home)  The health service is reluctant to call a mobile, so appointments would have to be booked well in advance and I’d end up taking a day off work and stay home and wait for the nurse.

Being active has undoubtedly kept me out of a wheelchair and in some ways I struggle to see how I would cope in a chair these days. Already I don’t walk home late at night any more, I used to do that.

My health now a days has left me feeling a little more vulnerable and I’m now more inclined to taxi home rather then catch a bus and walk for 10 minutes at 2AM.

Do I feel a loss of freedom? No. Auckland is a fairly accessible city.I suspect if I had ever been able bodied my view would be different. But I haven’t yet experienced a building I can’t get into and easily navigate.

The public at times can be very helpful or unhelpful depending on their mood. As I’ve mentioned in other posts I’ve had several faith healing attempts. Why do I go through with them when they ask? We’ll it’s hard to yell at them because they aren’t pushy they’re often very polite. Also I tend to fall for the “Can I pray for you?” line. I think they mean at home in their own time and it’s too late that I remember they mean right now!

I’m always grateful for help/assistance when I’m out and about. But the other part of the equation is sometimes you can see that the person helping me is getting something out of it as well. A sense of paying it forward I guess.

I’ve had people offer me rides to places if they see me walking in the same direction they’re driving, I am judicious when I accept a ride, and I’ve often asked people if they could place my shopping in my back pack, some shops do this automatically.  I’ve also had someone carry me up some stairs, this happened once. I didn’t ask for it. I was walking up stairs and an Asian man saw me picked me up carried me up the stairs put me down said “bye” and walked off.

Why point out that he’s Asian? Because I’ve had people use me as a reason to abuse Asian people and it bothers the hell out of me. Usually when I’m getting on a bus if they see an Asian person sitting in the front seat they’ll have a yell at them to move.

1. I don’t like the front seats, my legs get cramped and I’ll have foot spasms.

2. They maybe unaware it’s a disabled section.

3. It may not be the disabled section. newer buses have placed the disabled in the middle section of seating.

4. They may not speak English so yelling isn’t going to do anything. One driver actually physically grabbed someone and attempted to move them. I was already seated when this happened. It was really awful.

Good and bad this is the cost of my disability.

 

 

Standard
Film

I was a Shorty extra and got extra yelled at. Till Claire Chitham stepped in.

I wrote a while ago about my time as an extra on a short film. That was while I was at film school, after school I still needed to get a foot in the industry. So I joined an extras agency. I ended up on the street..Shortland Street!

Quickly for international readers Shortland Street is a 5 nights a week soap set in a New Zealand hospital. Judge Dredd, Jango Fett and Hercules sidekick have all been there. Lots of Lord of the rings actors. I’m going to mention a few names here to give these people props, others shall remain nameless.

It was a 2 hour commute and the pay basically covered my travel. I didn’t make money from it. being disabled the agency sent me out quite a bit. “You’ll just look like a regular patient.”. Once you get there your herded into a room. You need to take 3 changes of clothes, I just took shirts and hats. Changing pants would take to long. Turned my phone off and I sat and waited.

My first time I was just to walk into the clinic and sit down. Coming out of film school the set was really big and a little intimidating. As I stood there waiting for “Background action!” I must have looked pretty nervous as one of the main actors walked passed me and gave me a pat on the shoulder “Hey bro.” “Hey”. That was it. And then I saw another extra just go to town and screw up the shot.

This guy had been telling myself and the other extras about how experienced he was and that he was known for whacky/zany characters. Whatev’s you’re background bro, stay there. The scene is in reception On the reception desk there is a Canteen bandanna box.  The show is promoting the charity. “Background action!”  we all move, “Action” the scene begins.

Everything is going fine. Whacky Zany reaches the bandanna box, right where the main scene is happening, and tears into it. WTF are you doing! He proceeds to try on every bloody bandanna. Maybe his character has brain cancer and a magical bandanna can heal him. “CUT!!” “I think we had a scene stealer in that one.” Understatement. He gets directed to walk to the desk and then sit down.

On my last time job I was to be used in a bar scene (A disabled person in a bar on prime time tv. PROGRESS!). I had been in a few times now and had a handle on what happens so I’m comfortable. I’ve never had a mishap or any direction beyond “sit here.” and “Change shirt”. Naturally shit went wrong.

They are running behind. An extras phone goes off. This causes much yelling from the 3rd AD (3rd AD is in charge of extras) nobody moves. The phone goes again, more yelling. Nobody moves. “If you answer your phone now you won’t be fired!” A woman gets up runs to her phone and we get back into the scene.

“You stop looking at (MAIN ACTOR)!” “Did you hear me?!” “Please look at me when I’m talking to you!”

Maybe say a name?

No one is sure who he’s talking to, I’m facing the other way so I can’t see.

“You in the green shirt!”

Evidently it’s me, pretty sure I wasn’t but ok I’ll just focus on my fake beer.

The scene continues.

“Ok next shot that means you out, you out and you out!”

I am one of the you’s who are out. But I know I’m in shot so I stay seated. There are 3 people at my table who all move.

“Green shirt! I said out!” “Please listen when I am directing you!”

I really don’t like this jackass. “I’m in the shot.”

“What? No. Out.”

I start picking up my cane. I’m sure this is wrong but I’m not paid for my thoughts. I’m background bro.

Then it happens. Claire Chitham a long time cast member has a quick look around at the cameras and scene. She stands up

“No he’s right.” “Stay seated.” Brief but epic. The AD checks his notes. Mumbles a sorry.

The scene continues. I move pretty quickly once the scene is over. I’m not needed. On the way home I realise how much I know about sets and things. I decide to quit the agency. I did extra work one last time for a friend. But I’d gotten enough on set experience at that point.

Years later I met Ms Chitham after a play and was able to say thank you.

Also I now direct my extras personally.

Standard
Film, Theatre

A Marathon? Sure, I’ll do it.

Every year I do a marathon with a group of friends. We all prepare individually trusting that the other one’s will just be there and be ready. It’ll take endurance, concentration, water, coffee, no doz, deodorant, a blanket maybe a pillow or a bean bag for the lucky few. It starts at 2pm on a Saturday and I won’t be home till 3 or 4pm Sunday.

The 24 hour movie marathon is not for your fair weather cinema goer who struggles through a 3 hour film or is spooked by a triple feature. If you have taste and no tolerance outside of your taste it’s not for you.

I was invited a few years ago by a friend. I’d never heard of it so I thought I’d give it a go.  It started with an old 50’s film and then Zombieland (Well before the public release) I saw 4 other new releases that year as well as a lot of cult films. The closing film was Commando. This list is severely truncated to only the recognisable names.

Every year since I’ve gone back. Hauling out a hiking backpack I use just once a year. Stuffing it carefully with a blanket, food (both sugary & actual food). My stamina has gotten better and last year I managed to stay awake for the vast majority of it. I faded during the second to last film but was fine for the last film.

This is 12-15 films back to back to 5 min break to back to dinner break to back to back to 5 mins then midnight film,midnight film to back to back to back (sleep is for the weak) to OMG it’s breakfast, to back to back 5 mins break to back to back to can we squeeze one more in? Sure! to back and home.

You will not see a Marvel or DC logo grace the screen, you won’t know what’s coming at any time, you may know of one film before hand. You will have some expectations that won’t be close to what you’ll see if you’ve never been before.

There is a mixture of new features, old features, classic (not necessarily Citizen Cane or Hitchcock). There might be 4 or 5 mainstream films. Beyond that is so far beyond that I can’t even tell you for many reasons. Mostly it’s against the rules.

The rules. No phones or talking during the films. Doesn’t matter how bad you think the film is, how insightful your observation, how funny you are, noise pollution, light pollution, it won’t be tolerated. I once saw someone yelled out of the theatre for bag rustling at 3am. Don’t talk about what you’ve seen. Really try to control your stink.

This is where hardcore film people go. I have friends whom I only see here.  It’s a bizarre community where some people wear pajamas for 24 hours and others wuss out and drive home for a couple of hours to sleep or shower (wimps, unless your actually working the event then go for your life.). The most overwhelming sense of this community, for me, came a couple of years ago.

My friend had passed away about a month before the event and there was a sombre mood among my friends. I missed her badly. The marathon is broken up by smaller items and games between films. There is also a section honouring people in film who have passed away. Yes like the academy awards but it features people they may have missed. Right at the end they put up a photo of my friend. It was a nice touch.

It’s a good experience and if you’re curious you should go and at least try to stay for the midnight film.

Standard
Disabled Life

Got drunk, got a job, got fired, got rehired.

When I was at film school a lot of my class mates got experience on big sets as assistants and runners. This was beyond me. Nobody is really comfortable with a disabled guy in a position titled “runner”. Then I fell into a good idea.

It was a Friday night and I was at a bar having a few drinks. Around 3am I went into the disabled toilet where naturally the house band were storing their gear. I tripped on a drum kit on the way out and fell at the feet of a casting agent.

(This conversation happened years ago when I was less then sober so it’s not verbatim it’s just the gist)

“Are you ok?”

“Yea”

“You’re with the film school people?”

“Mmmhmm”

“Can you be at DeBretts at 7 I need extras for a short?”

“I’ll see you then”

I taxi home and get 2 hours sleep. I wasn’t a big drinker so no hangover. I get to set half an hour early. I was keen to see as much as I could. I was halfway through my film school course so just seeing a professional set in action was really important. Now that I’ve been on more short film sets I realise what I was seeing was rare. This film had some money behind it.

I’ve bought a couple of shirts, I look good (I did deal with it) and I’ve arrived on time. The crew start to arrive. The lighting truck is being unloaded and the agent I spoke to 3 hours ago is impressed I made it. Suddenly a shorter woman is scoping me out. She pulls the agent aside and they turn their backs to me……The agent approaches.

“I’m really sorry…the director …has asked for you not to be in the film.”

“Did I do something wrong?” I hadn’t been on a set like this I was really worried I’d done something like dressed wrong or not assisted with coffee. I had no idea and it was embarrassing to be asked to leave my first set.

“The director doesn’t believe….she doesn’t think it’s realistic to have a disabled person in a bar.”

“You found me in bar”

“I know she’s the director I can’t do anything…that’s just how it goes.”

Make no mistake I have memorised that director’s face.

I pack my stuff quietly and fight the urge to hurl abuse.

The actors arrive as I’m packing. The crew are not looking at me. I trudge off…a hand drops on my shoulder and I turn around.

“Hey Ant! Are you hanging out with us today?”

It’s my friends ex girl friend. Honestly I don’t know her well enough to call her a friend but it was both nice to see her and a little sad.

“Nope. I was asked to leave.” I don’t go into the why as there are too many people around and I don’t want the reputation of being difficult before I’ve done anything. But she reads me like a book and goes off to speak to the director.

I can’t fill you in on the conversation but there was a committee pow wow of four.

I’m in the film, at the back of the bar, on a stool, another extra is put in front of me. So I’m on the set but I won’t be seen.

Doesn’t matter. I’m on a set WHEEEEEEEEEEEEE!

At lunch I am seated with the main cast and then during a break I make my way to the crew table. (The separate cast & crew thing never sat well with me and I haven’t encountered it since).

The crew are really informative and I learned a lot during that break. The director came from a rich family and they were funding the film, the break was because the natural light was mixing in with the artificial light.

“Shouldn’t the windows be blacked out?”

GRIP “Yep”

Camera op “Just waiting on the director.”

I spend the break asking them questions and they’re happy to answer.

The whole shoot went longer then it should have but it was a huge boost to my confidence. It wasn’t a lot of fun but it was a huge learning curve for me.

I saw the film a few years later by chance at a festival.

It wasn’t good. I tried to find the film online just now and I can’t.

Standard