Disabled Life, Film, Theatre

Getting Involved.

This year has seen a big change for myself personally and I have been going over it a lot in my mind. It’s not physical it’s a mental change. I think. I’m not sure how to define it.

At some point this year I gained new followers on twitter, I still don’t know what post or tweet caused it, suddenly I was in touch with more people with disabilities and I have become more aware that I am not alone with my concerns.

So I decided to become more active on social media in issues involving the disabled community. Have I caused any change in the world, no, but I am still finding my feet in this regard.

There does seem to be a big move against casting AB’s (able bodied)  actors in disabled roles. So at this point I should address the elephant in the room.

My own films are guilty of this. It is something I have always been aware of and it is why I have taken extreme care with my actors to make sure they are honest in their portrayals, taking the melodrama out of the situation.

There are many reasons why AB’s are used. In my own case when I was at film school we had to use fellow students who were studying acting. However for the next 3 films I did in fact ring agencies and ask for disabled actors. You can only hear the phrase “There’s no market for that.” so many times before you feel like you’re asking in vain.

A cheat can be “We need flashbacks to when they were well” this of course leads us to the stereotype that all disabilities are caused by accidents.

Recently an actor in the US was questioned by disabled people about how he felt playing a disabled person when he himself was not disabled. His response was one of the worst I’d seen. He dismissed the concerns and tweeted out a picture of himself with standing with his two paraplegic consultants. One of whom was an actor in his own right. The whole situation just got worse and worse. I would have preferred if he’d engaged with his disabled fan base better, being rude and dismissive is unhelpful. It’s great to have a disabled character on screen but they could achieve more if they were disabled.

There are a few things I can accept. Budget and safety concerns can affect the casting of a disabled person but they should still be given the opportunity to audition. From there you can talk to them about their disability and what they can and can’t do.

I guess this is an issue I’m passionate about because I feel I can effect some change here and it is my hope to address the balance in a web series in 2017, I am hoping to once again be prolific in my script writing. Maybe I can bring some disabled people in on smaller roles thus creating a demand and then agents can have a better look at their books.

I’m also considering applying for  the disability advisory panel at Auckland Council. My main inspiration for this is my amazing friends who have been standing up for diversity much longer than I have. They’re smart and I have learned a lot from them and I hope to take those lessons and apply them to the disabled community .

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Disabled Life

A seat at the table

I’ve been thinking a lot recently about how to approach this subject and I’m not totally sure I have an answer to it or a solution. I do know I am not alone in considering it. Social media has enabled me to be in contact with other disabled people around the world and there’s a common subject coming through.

Disabled people feel they are being forgotten about. Not deliberately but it does feel like we have to pipe up  more or raise our hand. Even as I write this I feel nervous about speaking up and I worry about getting it wrong. But it’s not helping if I stay silent.

 

Here is an example from a recent buzzfeed article that better illustrates my point

when the Academy of Motion Picture Arts and Sciences president Cheryl Boone Isaacs released a statement in January in response to #OscarsSoWhite, she called for “inclusion in all of its facets: gender, race, ethnicity and sexual orientation.” Her omission of disability was something journalists largely failed to note. At the summit, Woodburn said the press “blatantly overlooked disability as part of the diversity discussion.”

You can read the full article here

https://www.buzzfeed.com/arianelange/disability-hollywood-inclusion?bftw&utm_term=.qbgk92Q8n#.eugZykEma

Post election in the USA many disabled people were concerned because they weren’t being mentioned. There was a lot of support offered to many minority groups. genders, races, sexual orientation. They are all important and I don’t want to be seen to be taking away from those groups. But it would be great to be mentioned, to have awareness spread.

As a disabled person I feel that the stereotype of the “inspirational crippled” is part of the problem. It encourages independence but it can also lead to being afraid to ask for help. Which means people are unaware there’s a problem.

Prejudice against the disabled is called ableism. It needs to be called out more and by more people. I have seen a few people in media in New Zealand call it out but not enough.

The issues the disabled face are the same issues as other minorities. There is a pay gap, a perceived lack of intelligence and so on and so forth.

I’m not saying that our issues are bigger than anyone else’s. I am just asking to be included in the discussion. For a seat at the diversity table.

 

 

 

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Disabled Life

The big fall

I have an infection in my right index finger. I can’t get an appointment with my GP and it’s throbbing. So I decide to go to the White Cross. I tag on a bus in the city heading to Takapuna, the bus arrives in Takapuna, once it stops I get up, people are already coming in the front door, I turn to go out the back, I hold up my card to tag off….

I’m on the ground, I can’t move my arms, my face slides along the path while my torso is still in the bus. There’s screaming, someone is holding my crutches, I can see blood. It’s mine. I check my mouth. There is grit but no broken teeth. There is blood coming from the bridge of my nose and my forehead. I manage to get my crutches back and haul myself up. People guide me to a bench.

There’s people asking me questions but all at once and I can’t answer them. They are talking about an ambulance. I can’t see my face so I don’t know the extent of the damage. I feel fine but I may go into shock. I quickly call someone at work and say “I won’t be in tomorrow.”it sounds stupid but it immediately means one less  thing to worry about. I text my brother and let him know I am going to hospital. The bus company is asking me if they should call an ambulance . This is weird. I can’t see the extent of the damage if you are looking at me and think I need an ambulance call one.

I tell him yes call an ambulance. A woman gets off the bus not looking at me but clearly agitated by the delay. She storms off into Takapuna. I don’t know her but already I don’t like her.

20 minutes later no ambulance, NZ Bus sends a little car and they drive me to the hospital. After filling out paper work they give me a quick clean up and concussion test. I’m all clear so far. I then wait for 4 or 5 hours to see a doctor. I don’t mind.

The emergency room is an interesting place. Everybody thinks they are a priority. I trust the nurses they make the list they know who is and who isn’t top priority. I am always amazed at how calm they manage to keep themselves.

A woman has come in with an allergic reaction. She’s told to wait. Her brother mentions it’s the third time this week. They are both older. The nurse calmly tells them they just have to wait.

An hour later they call a younger man. He storms to the desk demanding a doctor for her. The nurse tells them she’s not top priority right now.

The young man seizes on this and starts screaming “She’s not a priority! What does that mean?!” He also discloses she has a pretty bad health condition but it’s not related to the problem he’s clearly trying a sympathy plea.

A senior nurse exasperated tells him “I have two patients who’ve had their hearts restarted in the last few hours so on the list of priority your aunt is quite low, sorry.”.

Eventually they get to her but honestly the whole thing seemed unnecessary and stressful.

I am starting to doze off in the waiting room. I start watching the TV to try and stay awake, I also wonder if I’m drowsy because of concussion. Some St Johns volunteers arrive and are making tea and coffee. I ask for a coffee, just in time.

Around 9:30ish I see a doctor. He cleans my face and laughs. “Mate your nose is right proper messed up.”. He asks me about the accident.

This is what I have been going over in my head. I was on the ground fast. If I fall normally there’s a warning, you can feel when you’re about to fall. I couldn’t move my arms. I think someone must have knocked me from behind probably getting to a seat, I wouldn’t have felt it as they’d nudge my back pack. At that point somebody would have grabbed my arm to try and catch me. I couldn’t protect myself so here we are.

The doctor gives me a more detailed concussion test. I’m fine but I need to be careful for the next 48 hours. I set my alarms for two hours apart up till 8AM.

Finally I go home with an ointment for my nose and my finger drained, they just pricked it with a needle no antibiotics needed.

At 10pm I remember Movie Marathon tickets are on sale and manage to buy one.

I’ll be healed by then.

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Disabled Life

Getting a lift

I wasn’t sure if I’d really covered this part of being disabled properly or not and then I realised I haven’t blogged for a while and there was this thing I wanted to write about so I should just write it and see what ends up on the page.

I take rides with strangers.

There I said it, it’s out, OH MY GOD!

It happens regularly, it’s mostly women or guys whose partner has made them pull over and ask.

There are a few different approaches to it.

1  A car will pass me, slow down, reverse, ask.

2  A car will ease to a stop ahead of me and the driver starts clearing the passenger seat      and as I go by they yell out the window.

3 A car does a U turn and asks.

There are my own rules into accepting the ride as well.

Do I feel safe, Is the person local, How far I am going.

I have said no. Sometimes I am just short of my house and sometimes the driver freaks me out. Either in their manner or they sound drunk or on something. I have met some interesting people doing this.

A children’s tv presenter actually gave me a ride to and from my film school interview. She picked me up on Onewa Road. It was co incidence we were going to the same place. She mentioned she had seen me around the neighborhood. She knew I had been in a wheelchair  and was curious as to why I walked up Onewa Road every day.

WHAT A STALKER!

Except that’s also common. I am a fairly visible disabled person in the neighborhood and a lot of people knew me (in appearance only) as “That guy on the sticks who goes up the hill every day.”.

One ride was quite late at night. About 00:15. I had just finished work and taken the bus home. A white car raced passed me and then backed up and pulled into the street I was turning into. Two twenty somethings, a guy and a girl, got out of the car and started running towards me. They offered me a lift home.

I wasn’t far from home about 10 minutes walk. It’s late, I’m tired. They don’t seem threatening or very big (I can take them in a fight I rationalise). So as we get in the car they ask about my night, they are very energetic and happy….aww shit.

I know what’s coming at the end of this ride (and if you’ve read this blog so do you). While I carefully cover a laugh I ask them about their night 3…2….1

“We’ve just come from our youth group our pastor was talking about healing people and we were thinking about it when we saw you.”

“We decided it was a sign from God and we were wondering if you’d allow us to try and help you.”

“Thank you for the lift”

“No worries.”

“Can we try heal you?”

Sigh….I let them…..it didn’t work.

One of the best people I met was a retired builder. Every now  and then he does a bit of work on people’s houses. He has one of the best voices I have ever heard and yes I recommended he seek out an agent for voice work. I haven’t seen him in a while but I hope he followed through on this.

I am well aware of stranger danger but the at this point I trust my instincts.

 

 

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Disabled Life

My funny old phone.

My move to mobile phones was slow. I didn’t get one till it became necessary, about half way through film school in 1999. It was a brick. Eventually I got slimmer phones that were more robust and now I have a Nokia 33 something or other, It gets calls and texts and that’s all I need it for.

But I would be lying if I said I didn’t sometimes look at smartphones and think about upgrading. It would be great to have access to a map or being able to pull information off the internet where ever I was when I needed it. Then the issues of my disability come up.

I struggle with touch screens, badly. Any small/fine hand movement is difficult. Threading a needle, lacing a shoe, typing on a touch screen. It would take forever. There are voice to text apps but I don’t fancy speaking out loud to myself to send a text on the bus.

Robustness is also an issue. As funny as my old phone is it has survived many falls and drops. When I look at smartphones they look fragile and if one broke within a month of buying it I would end up feeling pretty stupid.

There’s also the fact that I don’t really trust  salespeople that much. A consequence of people pushing the hard sell on me. I once had a woman trying to sell me a book of restaurant vouchers

“I don’t eat out that much”

“But you could go out with your friends and save a lot of money”

“No that’s ok”

“Ohhh my God…I feel so sorry for you…you have no friends…you don’t go out…you’re really sad.” (This is not exaggerated this is what she was saying, there were hand movements and a kind of dance.)

I shut the door and left her making begging noises on the driveway. What she was doing was a legitimate sales technique. If you are selling cars you would make the buyer feel bad about their current car and make them feel better for showing interest in the newer car you are selling. This is how I saw it presented in a bbc documentary about sales techniques.

The other strange one is “Mirroring” where you mirror someone’s movements and speech patterns to try and build an instant rapport. I had an actress (who shall remain nameless) try mirroring me once during a meeting about a script. It freaked me out. She seemed really nice, she actually is I found out later, but something was off and during the conversation I never felt comfortable. We were seated and talking about the script. My foot was angled back due to cramped seating at the cafe we were in. Suddenly I had a foot spasm and it jolted me so my arm kind of slid across the table a bit.

Then her arm slides across the table.

WHAT THE FUCK ARE YOU DOING?!

I wrapped the meeting up pretty quickly, I was weirded out.

She didn’t get the part but we stayed in touch, I put it down to she was trying something out, maybe she was nervous.

Back to my phone situation. I’m sure at some point the time will come when I must upgrade. There will be a teething phase for my new phone and I.

But not today.

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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.

 

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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.

 

 

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