Disabled Life

Thanks for the advice.

I wanted to write about something that happens to me on a semi regular basis. I’m trying to work out the cause and figure out a better way of dealing with it. I assume it happens to other disabled people as well. That is a complete stranger coming up to you and making bizarre, sometimes offensive, statements about your life.

I should be clear this is not the same as a kid approaching me and asking what the crutches are for and am I in pain. I’m totally fine with that, it’s a natural curiosity and I’m always polite about it because I could be the first disabled person they’ve met.

How does it come about? When I’m on my own is when this is most likely to happen. If I’m at a bus stop or waiting for somebody. The earliest exchange I remember was when I was a kid with my mother in the local shops. A woman with a pram walked past and turned to my mother and said “Did you have a good time beating him up?”. My mothers response was swift and loud “Excuse me!” “Oh shit!..Oh God. I’m so sorry I don’t know why I said that.” This was back in the 80’s but it stuck with me.

The other day a woman approached me at a bus stop.  “Do you live around here?” “Yes.” “What happened to you?” “I was born with it.” “Should get a mobility scooter so you don’t get tired.”. “I’m fine. I have strong arms.” “You live around here?” “Yes.” “In a home?” “Yes.” “Disabled home…where is it?” “No regular home.” “Ahh with your parents.” “No.” She is very puzzled but persists “With family?” “My brother and I share a house.” “Ahhh so he looks after you.” That was a statement not a question. Than the bus turned up.

I genuinely find this a lot more offensive than faith healings. Faith healings people still ask if it’s ok and they don’t talk down to me.

Currently I’m very polite about it but the longer the conversation goes the closer I get to breaking point. I still think it would blow these people’s mind that I had made a few films.

Here’s another exchange from a week ago

“Excuse me I was just wondering what happened to your legs?”
“Nothing, I was born with it.”
“Ohhh I’m so sorry, I do feel sorry for you.”
“I’m fine. It’s ok.”
“You don’t feel like hop along Cassidy”

I don’t really get the reference although I’ve heard it before.

“No.”
“God bless you.”
She shuffles off.

The three examples I’ve given are all women, the last 2 older women. Men are guilty of doing this as well. The difference is that they’ll offer pretty blunt advice and then throw in that they admire me for just getting on with things. Which is also weird.

Three times I’ve been asked if I would like somebody to set me up with a wife. Not a girlfriend, not a blind date, a wife.

The first two times the offer came from bus drivers. They sort of knew me as we’ve had brief conversations when I worked the night shift. One driver pulled into a stop waiting till he had caught up on his schedule.

“I worry about you bro, I don’t want you to be lonely eh.”

“I’m fine.”

“You ever think about a wife. There are women in my country who would do anything to leave,  even marry you.”

Ok now you’re thinking why did not stab him in the neck. Mostly because I need him to drive the bus. Also I was very tired so I let it slide.

The second time was a similar setup but this driver was flying home and offered to find me a wife while he was at home. I also had a neighbour ask me to marry her sister “She’s 21 and will be no trouble.” and a home help woman who told me “You should get a girlfriend to look after your house.”

So why does this happen? Home help woman aside (It was her first and last day she was sexist and ableist and we were pretty glad to never see her again.) I think this is what happens.

People see me around the neighborhood, regularly. They start to build a kind of back story in their head or they feel some sort of connection, maybe they think I’ve seen them around. Then when they see me just standing there they take the opportunity to approach and I guess fill in the blanks.

Strangers will always approach me and for the most part these interactions are fine. Can I help you? Totally fine. Can I find you a wife? Not so much.

 

 

 

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Disabled Life

Buses and you and I

I’m kind of surprised I haven’t really written about buses before. It’s not the most interesting topic I suppose. You get on, you go to a location, you get off. Pretty simple.

For a disabled person it can be quite daunting. The first step is getting on the bus. You don’t want to hold people up, You hope there is a seat available, can you get your change out quick enough, don’t slip, you are holding up the line. In Auckland there is the tag on, tag off hop card system. It works pretty well and I prefer it over handling change which can be easily dropped and again holds people up.

People are not patient on public transport. I have seen this firsthand. There was an old woman struggling to get her walker and shopping onto a bus. “Aww come on!” I heard somebody groan. The driver heard it to. He got out of his seat and helped the old woman, who reluctantly accepted his help, on board. He then told the complainer to wait for the next available bus.

Seating

Getting a seat on the bus should be easy. You see someone elderly or less abled getting on a full bus, you offer them your seat, if you’re physically capable. Some people do have invisible disabilities and may require the seat. An invisible disability could be Arthritis, epilepsy, chronic fatigue, a number of conditions with no outward physical marking.

Buses will assign certain seats for the disabled. Commonly the front two seats, the two seats facing each other and the flip down seats on the side. I have crutches, a backpack and a right knee that won’t bend past 90 degrees. So the front two seats are out, they usually have a barrier in front of them, also you usually have to go up a step to get to them. I don’t know who decided they should be disabled seating but whoever did, bad call.

The flip down seats are annoying and I’m not wholly convinced that those are seats for the disabled. I think that area is meant for a wheelchair user. The seats flip up to enable a wheelchair to fit in. But there is a huge handicap logo there which means often people will clear out of those seats for me. Holding down the seat and sitting in it is a physical challenge I can sometimes win. Sometimes.

The two seats facing each other. These are the best. Plenty of leg room means I won’t have a foot spasm and there is a handrail to help me get up. Of course these are also popular with school kids, office friends, tall people, big people, backpackers, shoppers, parents. People will not give up these seats unless it is a last resort….and even then maybe not.

I got onto a bus yesterday. It was full, standing room only. A woman offers me her seat. But unfortunately it is a front seat with a barrier. If I sat there I would have to squeeze my right leg in. The cramped space would trigger a spasm. I politely decline saying “Thanks but I couldn’t fit my leg in there.”. I wait….and wait….I haven’t tagged on….”I’ll get the next one.”. I am disappointed. Not that I’ll have to wait 20 minutes for another bus. But because people ignored me so easily. As I sit back on the bench. A few shocked faces look out from the bus. No doubt they all thought somebody else would move while they ignored the situation preferring to stare at their phone.

Don’t be that person. Don’t assume somebody else will move and don’t put the pressure on somebody to have to ask for a seat.

It’s hard enough having everybody stare at you.

 

 

 

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Disabled Life

A very frustrating predicament

Last week I was going for a walk. Then I hear a crunch and a ping. The crutch on my right arm twists, swinging my body with it. I manage to relax and crash on to my side. My first thought is I slipped. I check the crutch. It’s in tact. Then I see the cuff has moved sideways. The rivet holding it in at the back has snapped, again. This is the third time this year I have had a crutch break on me.

I am halfway between home and the bus stop. I don’t have my phone on me. F**k it, I grab the crutch and start walking on the one good stick to the bus stop. It’ll stop 100 metres from the chemist and I can walk that.

When I get there the woman who normally deals with it has left. But the staff know me and are as frustrated as I am. Why did this happen?

  1. The first time it broke I slipped on a piece of plastic, slid and slammed hard into the ground. Not hurt but snapping the cuff.

2. Second time the rivet snapped 36 hours after the crutch arrived.

This time I think I know why. The cuff is very tight on my arm, it’s fine for somebody who just broke their leg and is on the sticks for a few weeks. But I’ve used them for 30 odd years. My forearms are bigger than average for a guy my size. This would put pressure on the crutch causing it to snap.

I talk about this with the chemist and they agree. The crutch is sent to Hamilton.

Today I got a call from the manufacturer at 2:30pm. I have never talked to them before.

“I’m in Birkenhead, what’s you’re address? I can just pop over to your house and have a look at the crutch to see what’s going on?”

“I’m at work.”

“You work?”

I ignore his surprise at this fact and tell him where work is. He’s driving over to meet me.

The assumption that disabled people just stay at home is still alive. This is not the first time I’ve heard it. I also had a community nurse who made unscheduled visits expecting me to be home. Because why would I work? That’s crazy!! OMG what if I could vote!

Manufacture man arrives. I show him the cuffs on my other crutches which are wider than the new one. I ask about a bigger cuff.

“Aww no. These one’s have just expanded with age, they’re the same size.”.

“Right”

“I’m gonna put 3 rivets in this time. You should talk to your occupational therapist about this.”

“I don’t have an occupational therapist. I’m a bit old for that.”

“Ha. Really? I find that very hard to believe.”

I amaze myself and don’t punch him in the face. Occupational therapy as I have experienced it is about adapting and managing your disability day day to day. You learn how to get in a bath, get on the toilet, dress yourself , move around the kitchen.

I did OT for a long time up until I was 16. By that point I had my system sorted out. There is nothing I would gain from it now.

It is obvious he is not going to listen to me. Maybe his 3 rivet plan will work or maybe it’ll snap again and they can try 4 rivets next time.

You would think somebody who works with disabled people would be more open minded. Often they aren’t they have read a text book and been told how to deal with text book cases. It worries me that my life is considered an oddity by them.

I would think I should be the norm.

 

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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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