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

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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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.

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Disabled Life

A simple procedure

There is a procedure that I have done every 7 months or so. It’s designed to protect my kidneys and involves botox being put into my body, this is the nicest explanation I can give you. I have had this done twice before with no problem. Not so lucky a third time.

It’s performed at the elective surgery clinic. As far as hospitals go it’s nicer then the main hospital there are comfy chairs, nothing looks worn out and things seem to run smoothly. Upon going in you’re subjected to about 3 or 4 interviews where they check that you are who you say you are and you know why you’re there. I go in and a young woman about my height hands me some clothes. The clothes are horrid. You get paper underwear, a gown, a heavy dressing gown, stockings and aqua green wollen socks. The stockings prevent deep vein thrombosis. I wonder how long this has been a thing. You get to keep the socks, which are great in winter.

I’m left alone in the office for a bit. There is a list of anesthetists there. Lots of names and numbers a few without landlines, I guess these are the younger one’s coming through. I’m taking into the waiting area before surgery. There is a woman they are checking on. She’s waiting for someone. She starts sobbing. This doesn’t ease my mind.

I am taken into the surgical ward. The anesthetist is setting things up and I am given the questions again.

Who am I?

When was I born?

What surgery am I receiving today?

I wake up 2 hours later. A nurse is calling my name. Something is different. I have an oxygen mask on. I can see a blood pressure machine. The doctor is not there and my chest is sore on the right side. My blood pressure is up to 170 and my vision is blurring in and out. None of this is normal.

The anesthetist comes out.

“You had a lung spasm at the end of the procedure, I had to hold your jaw open as your vocal chords seized up.”.

My chest is sore because my body was straining for air, I’m glad I did all that extra cardio work recently.

I focus on my breathing taking deep long breaths. I’m trying to get my blood pressure down. There is a lot of talk that it’s not a big deal. Then they bring out an EKG machine. My chest feels like it was stabbed. My vision is getting better.

They are discussing whether I should stay overnight. The EKG test is fuzzy, this is a machine fault not a heart fault which they quickly point out. I opt for staying overnight. Motion carried. I wonder if the anesthetist has his landline on that list. It is getting late, It’s about 8 and the clinic closes at 8:30. My brother & sister are told I’m staying.

I am taken to a single room ward with an ensuite. I still have a breathing tube in my nose, It’s there for the night. My blood pressure drops a little. Eventually stabilising down to 125 (I am dehydrated so that’s normal). I can’t sleep, hospitals are not great places for that. There is light pouring in around the open door and the monitor is beeping every few minutes, I can hear the air tube blowing. I focus on my breathing again. My blood pressure is moving between 140 and 150. I convince myself it’s the lack of air.

A cough brings up some mucus and blood.

The right side of my chest is killing me. Being on crutches I’m very strong around the chest so barely being able to move it is new. Every time I draw breath it hurts.

By 9am I am eating a proper breakfast and I can move without major pain. I get home and I go straight to bed.

The weekend is spent in a chair with minimal movement with some frequent napping.

My next simple procedure is in May.

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Disabled Life

Cripple fight

Firstly apologies, I haven’t written for a while mostly due to medication but also I couldn’t think of a subject. Then I had a think about all the times I’ve come into conflict with other disabled people. My reaction mostly was to tell them they should…*hastily depart..

The very first time I can remember was a school councillor sent me to a self help group of disabled people to talk about what problems I had. So I’m 16 years old everyone is older then me and all of them have different disabilities. One guy is sitting in a wheelchair he’s old and angry. I can’t remember what I said. It had something to do with an assistant dog something like that (helping hand dogs rather then guide dogs). I threw an idea to solve a problem into the group. It was met with laughter and derision. I never went back.

Later I gained some notoriety for playing indoor cricket. I had met with the Auckland cricket team and told one of their coaches about an idea I had. An indoor cricket tournament for able bodied and disabled kids. 4 AB’s 4 disabled per team. There was a softer ball used in indoor cricket. The Auckland team would supply some players to coach. The idea was to promote integration and team work. Well I had one conversation with the CCS. “What if they get hit with the ball?” “It’ll hurt.” “Ok bye”.

So my ideas for problem solving issues in the wider disabled community have not been taken to well. At that point I pretty much gave up there seemed little that I had to offer. There have been other things I’ve done that have pissed people off. Mostly unintentional which results in me being pissed off and a little depressed at times.

I once got lectured by a guy at a party for telling disabled jokes. He fell into the it’s a defence mechanism camp. It’s a popular theory. No one is ever  just funny it’s all a defence mechanism these days. My own thoughts are that it allows people to relax and later ask questions about the disability. I find it better then having them stare at me paying a small amount of attention to what I’m saying because their just waiting to ask me some question they’ve had in the back of their mind the whole time.

So when did I get depressed? It was a hot day and I was walking on my cane up the road. A car pulls over and offers me a lift. I don’t know the guy and I don’t have a good vibe about it so I say no thanks. That should have been the end of it. But nooooooooooooooooo he then tells me he’s seen me around and watched me (creepy right…this is actually something I hear a lot) I shouldn’t be to proud. I should get a mobility scooter or wheelchair. I should stop trying to pretend I’m able bodied and accept my disability and make my life easier.

When I get home I am depressed as fuck. This arsehole has gotten to me at a low moment. I vented on facebook about it I was very grateful to the friends that responded. I was in a wheelchair for a very brief time it was not great and it didn’t make my life easier.  It became a bit of a turning point. I have had people tell me before that I should consider a scooter or wheelchair. They don’t realise what you lose when you’re in a wheelchair.

Two things I remember from when I was on a cane. It was the first time I held a girls hand while walking. I was 23 and my friend wanted to go into a shop, she grabbed my hand and I screamed. The other thing was showering. Sorry tried showering while sitting on a stool or bench. It’s really cold and uncomfortable. I’m not giving it up.

These days I guess I can help the disabled community through my films. I can present my ideas and people can take away what they will. Disabilities are always different and present different problems. Maybe I can’t help other disabled people maybe I can just be a voice…sometimes.

*F off

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Disabled Life

Inspirporn and Alex McKinnon

Inspirporn.

It’s a strange word and to be honest with you it’s one I’m still getting used to. It basically refers to stories about disabled people doing things designed to make people (usually able bodied) feel better about themselves. It’s a weird situation for me because in some ways I’m a part of it and on the other hand it is a little condescending.

When I started directing I was told at film school that it would happen. And sure enough there were interviews focused on the fact that I was a disabled film maker. I made peace with it by deciding if another disabled person saw what I was doing maybe they would become inspired to try out something in the film industry. The New Zealand film industry is not so great at encouraging disabled people to join. Which is odd given that in the 80’s we made The Kids from OWL which prominently featured disabled characters, I would love to reboot it.

Stories like this clearly have a place if they inspire other disabled people.

Hugh McGahan however this week crossed a line in the opening paragraph of his New Zealand Herald column. He was writing about Alex McKinnon. Alex McKinnon is a former professional rugby league player who has been left paralysed after a tackle where he went head first into the ground.

During a television interview McKinnon was shown the incident and expressed his anger about what happened and in particular the fact that the opposing teams captain was arguing over a penalty while McKinnon was being attended to by medical staff.

Mr McGahan’s opening paragraph “The best thing Alex McKinnon can do is stop talking about the tackle that paralysed him and talk more about his inspirational story to try to recover from his horrific injury.” -Hugh McGahan

In other words, Be grateful you’re alive and stop whinging about your feelings that make me feel bad.

The rest of his column details how the tackle is McKinnons fault (That’s possible) and how he is losing public support after the interview. I don’t disagree with the rest of it. I’m not informed enough to really make a call on it.

BUT his opening paragraph is cringeworthy. He is a respected former player and his words carry a lot of weight among the public.

McKinnon is newly disabled and I can’t imagine what he’s going through. There will be moments where he’s alone with his thoughts or wanting desperately to do something he used to do and he can’t.

Myself I have gone from crutches to a wheelchair to crutches to cane back to crutches. I have had low moments where I used to wonder what my life would be like if I wasn’t disabled. I would talk to a friend about it or write about it. Everybody needs an outlet McKinnons accident happened this year so I’d say his anger is very raw.

Christopher Reeve in his book Still Me wrote about the fact that whenever he dreamed he was walking. It was what gave him hope.

To tell a disabled person  to stop talking about the bad part of their lives because it makes you feel uncomfortable is unbelievably awful. To do it in a newspaper that is available world wide via the internet is disgusting.

It is not a crippleds job to provide you with inspirporn.

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