Star Wars and wheelchair seating update

I just wanted to give an update and a shout out to Landmark’s Grand 10! The manager will reserve a seat for my husband, so I have bought tickets for December 18th to see Star Wars VII!

Very excited!

There’s only one problem now. It’s in 3D which plays havoc with my MS vertigo. It first raised its head when I went to see Avatar with my husband and step daughter. After a few minutes I realised that as soon as things started to move on screen, the whole movie theatre started spinning! I took the glasses off. No go, everything is blurred. I put the glasses back on and covered up my left eye. All good. Only another 2 hours to go… this wasn’t going to be an option for the whole film. I found a kleenex in my bag – a clean one I have to say – and draped it over one eye. Success! 

I tapped my step daughter on the shoulder to show her, and she nearly fell out of her chair laughing. But necessity is the mother of invention, and all that.

Since then I haven’t been able to go to the movies very often, for other MS related reasons. I’ve also tried to see the movie in 2D when it’s offered – because paying extra to sit with one eye covered isn’t really worth it. When I have no choice but 3D, I now have a bespoke solution, and channel my inner pirate…

  

Why we need a CDA – to go to see Star Wars!

The election has come and gone, and the Liberals, who are forming the next governement, promised that they will introduce CDA (or a National Disabilities Act) as part of their manifesto. Excellent! Now we have to work to keep this issue alive admist all of the other issues competing for attention.

It’s important not to get hung up on the nuts and bolts, in this mish-mash of Federal versus Provincial, who’s responsible for what. The first step is to raise the tone of the conversation. Raise the expectations. Raise the bar. Raise the sense of what is fair and equitable and what equal access actually looks like.

There are many examples I could use, from “real life”, from every day struggles, but instead I’ll explain it with Star Wars. And the nuts and bolts of going to the movies on opening night in a wheelchair.

I love Star Wars. I was 11 when I saw the original one. (Quick claim to fame, and a tenuous one. My mum has a friend who was Luke Skywalker’s stunt double and did a load of other amazing stunts in the original trilogy and a lot of other incredible movies. I’ve spoken to him on phone…) Anyway, Star Wars VII approaches! I got a tear in my eye when Han Solo said “Chewie, we’re home” in the trailer. I have bought a dress just to go to the movie in. You can say I’m excited.

In the days before MS and the wheelchair we would line up to see movies on their opening nights. James Bond, Lord of the Rings, Harry Potter, and of course, the second Star Wars trilogy to come out. We still talk about the moment we turned to each other when they first use the “evil” music behind Anakin in Star Wars II. Get the idea? I’m excited!

In parts of the world people are already reserving tickets online for the opening night. I don’t even know if it’s possible here yet, but it’s not possible for me. I could reserve tickets, but they’re not specific for anywhere. They’re for the whole auditorium. All of those seats that I can’t get to. I can’t reserve the spot that I need. I’ve emailed Cineplex to ask them about it. Resounding silence in return.

Neither can I line up for hours in advance. It’s in December. Me outside in the cold for all that time? Me lining up for that amount of time, ever? Just not going to happen. And if I do buy tickets and get inside, there’s probably 2 places I can put my chair and Ian can go next to me. What if there are two people in ¬†wheelchairs who got there before me, and I have no way of knowing that? And, even worse, what about that awkward shuffle when someone who isn’t with someone in a wheelchair has sat in those seats with the blue badge on them – and you have to ask them to move? And they don’t want to, because all of the “good seats” have gone and they’ll end up down the front, craning their necks???

I can see people rolling their eyes and thinking “Just how important is it? Why not wait until all the fuss has died down? Going to the movies is a treat not an essential.” True, so what you’re saying is why don’t I compromise? Sure, I’m an expert at that! I compromise on everything I do, every single day! What’s one more compromise?!? And I’m really good at doing just the basics, not the icing on the cake, because that’s what my life is, doing the basics as well as I can. So, sure, what’s one compromise more?

Yes, that’s the point. Another compromise. People with disabilities, all types of disabilities, compromise all of the time. We compromise in our expectations of work, travel, employment, income, education. We compromise on what we can achieve every single day ¬†– “If I don’t ask my neighbour to help me tidy my yard, then perhaps they won’t mind when I have to ask them to change a light bulb for me.” “If I use all my energy to buy groceries today, then I’ll have food at home for the next three days, because I’ll have to rest from the effort that I used shopping.” “I will watch the Easter service on the tv because there’s no accessible bus service on Sundays to get me to church.” And I am so so lucky but none of those situations apply to me, because my husband is my full time carer, for which I am extremely thankful.

And these are the easy ones to compromise on. We are strong, resilient, independent people. We cope with all manner of physical and mental indignities that the vast majority of people could never imagine, thankfully. And we do it over and over and over again.

We need the bar raising on the conversation in Canada about the barriers faced by people with all kinds of disability. We need the expectations for accessibility for those of us with disabilities – physical, mental, developmental, invisible, episodic – to be the same as those people who don’t have disabilities, so that people with disabilities can achieve the same outcomes as everyone else, with whatever changes need to be made to make that happen. Society should not expect us to compromise, society should demand that these accomodations are built in, no matter the cost, effort or effect.

This photo made the news this week – Justin Trudeau carrying a man in a wheelchair down a flight of stairs. I wonder what was going through his head as he did this? “I’m glad I was able to help him down these stairs.” “I wonder why he has to be carried down these stairs.?” “What must it feel like to be put in this position?” “How many other people all over Canada are stuck today because the public transportation is not accessible to them?” “What can I do to raise the bar on expectations in all areas of life in Canada so that people with disabilities do not have to face these barriers?”

I hope he was thinking all of them, but particularly the last one.

Justin Trudeau helping to carry someone in a wheelchair down an escalator

Quality of Life hits the road – Part 1!

What do you think about when you book a hotel room? Location? Price? Choosing between different room sizes and layouts? Choices, choices, choices! And how do you pay? Do you use Airmiles or other rewards? Clickety click! All done!

Have you ever thought what it’s like to stay in a hotel when you’re in a wheelchair and have a chronic disease? Here’s how it goes for me. I look at the website and usually I can’t find the information I want. If my speech is working, I ring the hotel, and if not, I search for an email address. I ask one question – do you have wheelchair accessible rooms in your hotel? If the answer is no, move on to the next hotel, and repeat. There’s no choice. One room, one layout. And it might not be in the cheapest price range either. 

Want to pay with Airmiles? Contact the hotel, ask if their wheelchair accessible room is available on the nights you want it (because often there’s one room in the whole hotel). Book online with Airmiles, but you have to book an ordinary room because it’s not possible to book a wheelchair accessible one through their system. Contact the hotel and ask them switch your reservation to the wheelchair accessible room – but wait! It’s not on their system!!! Wait for “an hour” for it to show up. The last “hour” I waited for lasted for 5 days and the whole time you’re hoping that someone else doesn’t book the room ahead of you, because if they do, you’ve lost your Airmiles, there’s no way to get them back.
Then you get to the hotel, check in, get to the room. First thing I check out is the bathroom, because the layout of the “wheelchair accessible bathroom” will mean if I’m able to shower while we are there. Some of them I can’t get into the bathroom and shut the door. Some of them I can’t get close to things around the sink – and one memorable one had the sink in the bedroom because they couldn’t fit it in the bathroom! The bars could be anywhere, any size, any strength. One bathroom, the bars were only attached to the flimsiest plywood and not to any of the wall studs. The whole wall moved when I tried to use it.

And if I could get into this shower, I don’t think I would be in a wheelchair!

  
And the beds! High, low, hard, soft. Have to move the furniture to get my wheelchair close to the bed. 

And then I’m in bed all afternoon. How quiet is the hotel? Can I sleep? Can I set the AC?

It goes on and on and on and on…  The stories I have…

Twice a year, on average, we seem to go to the neurologist and various other medical appointments in Vancouver. Our granddaughters live in Vancouver. And we would love to be able to pop away for the odd night. 

We have two dogs, you may have noticed. Every time we go away they have to go into the kennel.

Enough of this craziness! There must be a better way!

Let me introduce you to our winter project – Winnie the Bago!

We have bought a Winnebago that has the same floor plan as the ones that Winnebago set up as wheelchair accessible themselves. We have also bought a wheelchair lift from a school bus. Over the winter months, it will be transformed and we will hit the road in the spring!

The dogs will travel with us. The bathroom and bedroom will be set up to meet my requirements. No more having to eat out if I don’t feel like it. Food wherever we want it. Freedom!

I love camping. It’s not the easiest thing to do with my combination of disabilities! In our basement we have all manner of camping equipment and 4 or 5 tents. I haven’t been able to get into the basement for 6 years, nevermind go camping. Perhaps now I can finally bring myself to let them go… maybe…

Here’s some photos – the insides are already being ripped out! Stay tuned for more updates as the transformation takes place!

  

This is how it started out inside:
  
 Stage one: Remove the dinette

 

Stage two: Start altering the bathroom. Pipes to be moved first, then decisions to be made…