Renal ultrasound – and where would you like me to pee?!?

Ever had a renal ultrasound? You drink a load of water an hour before you go, they scan your bladder and your kidneys, you pee, they do it again.

Sounds straightforward? Well, it is, unless there’s nowhere for you to pee in privacy.

Last year I had this done for the first time, and the only wheelchair accessible toilet in Kelowna Medical Imaging (101-3330 Richter Street, Kelowna, if you’re interested) is not wheelchair accessible. You can’t fit the wheelchair in and shut the door.

I drank the 3 glasses of water an hour in advance, got to the appointment, was kept waiting an extra 30 minutes, and was then told to pee and come back. To say I was bursting to go was an understatement! I tried to fit wheelchair in from a number of angles and shut the door, but no go, all the time getting increasingly frantic messages from my bladder. Ian and I came up with another plan – quickly. I went in, transferred onto the toilet with the door open, Ian took the chair away, I shut the door – so that the people working at the desk, standing at the desk, and sitting in part of the waiting area didn’t have any more of a show – and I then had to stand up again, pull down my clothes, pee, stand up, sit back down on the seat – enough information for you yet?!? – and call Ian, who then brought the chair in, and, with the door open, I transferred back on to my chair and rolled past all the people who had just witnessed by floor show to go back into the scanner rooms.

All that needed to change was the door needed to swing out and not in.

I rang the clinic, explained it all to the sympathetic – or so I thought – office manager, and she said she would get it altered.

All they needed to do was change the hinges.

A year goes by. All that gets happens is my ability to transfer gets worse. The door is still the same. 

All the needed to do was change the hinges.

And they were 20 minutes late, not 30 minutes.

This time I am prepared! I have a measuring tape with me and my phone to take photos!

I could describe what happened in detail – but I think you get it – scan, rush to loo, door open, transfer, chair gone, clothes down, pee, pull clothes on, sit back down on seat (yuck), chair in, transfer, roll past adoring fans who have watched every step.

The office staff make a suggestion – why don’t I use the bigger public washroom that’s outside the clinic, in the public area of the building. Sure, yes, that’s what I need, to go further away. I’m sure you make that suggestion to all of your able bodied clients?!? And remember, peeing is part of the procedure – they’re not offering this washroom just as a courtesy!

Did you notice how often I washed my hands? Yep. Not at all. I can’t get to the washbasin.

I have the building code on my side – I have my measurements – it doesn’t conform. No more phone calls to supposedly sympathetic office manager. My letter, with building code, photos and measurements, is on its way to the office, my urologist (he sent me there – why should he miss out on the fun?!?) and the City planning department!!!

All they needed to do was change the hinges.

A photo blog of my journey to my neurologist

Recently my MS has not been doing too well, so I have had to make a winter journey to my neurologist, which means flying. It’s no faster, just safer. I thought I would take photos of every step along the way.

First step – get to the airport and drive there in my wheelchair accessible van. We have to leave especially early because of all the steps of getting the chair through the airport.

Me, in the dark, in the van
After arriving at the airport, check in. I can never check in online in advance, as they have to see my chair and assign me to a seat close to the front, with Ian next to me. This used to be at the front, but now WestJet has the rows that people pay extra for, the closest row is row 5, which brings another issue I will bring up later! I answer questions about my chair and what type of battery, and my chair gets tagged to say it needs bringing to me at the door of the plane.

WestJet check-in desk from my view
Now off to security! No pictures inside for obvious reasons. I have to put all of my things on the conveyor belt like anyone else, and there’s always a discussion about just what can be removed from my chair and what has to stay. I can’t walk through the scanner, so instead I have to have a pat down. Sometimes I’m offered a private place, which I never take, sometimes not. Some of the patdowns are very thorough and even feel quite intimate whereas others are cursory. This one was the bare minimum!!!

Security line for wheelchair users
When it comes to getting on to the plane, I go first. It’s not because I want to be first, it’s because of the amount of help I need. Some people are impatient and want to get on before me, but there’s nothing to do but wait, and you will slow the process down.

The gate desks
When I checked in I was asked how much ability I had in getting to my seat. Having done this before I told them I wanted the Washington Chair (also called the aisle chair) rather than The Eagle! The Washington Chair is a tiny chair that fits down the aisle. The plus side is it’s easy for everyone, both for me and for the crew that wheel me on. The negative side is my hips don’t fit between the arm rest very well! Remember those new seats that cost more I mentioned earlier? Not only do I now have to travel further down the plane, but the new seats are slightly bigger, meaning that the aisle is smaller. The people wheeling me always are very careful and want to go slowly to try not to hurt me, but I tell them it’s like ripping of a band aid – just get it over with!

The aisle chair, a small narrow wheelchair
Me transferring to the chair  Me transferred onto the chair
While all this is going on, Ian is waiting with my chair and all of our carry on stuff. My chair folds down, so Ian always gets it to just the right state to make it travel as best as it can. He also gives a quick lesson to the people who take my chair away on how to disconnect the battery, otherwise it could easily be damaged.

Ian, waiting with my power chair

This is what the plane looks like when I get on. No one on it at all. Now we have to wait for all of the other passengers to get on. We like people watching at this point – nothing else to do! And we like to see the size of the carry-on bags some people to try bring on.

My view of an empty plane
While this is going on, often we can watch my chair being loaded. I don’t enjoy it, but I want to watch. to get it on the conveyor belt, 4 people lift it. It weighs 350lbs. I’ve seen people trap their fingers. I’ve watched as my chair came off the end – and of course I had the whole experience where my chair never made it this far as it was dropped onto the floor from 20ft in the air and destroyed. The chair makes it up the ramp, even though there were a couple of hairy moments.

My chair being manhandled onto the plane
During the flight, there’s no trips to the bathroom for me. I would have to get into the onboard Washington Chair, and there’s no way to transfer safely into the washroom. The one time I had to do it, we had to keep the bathroom door open, because that’s the only way we could fit everything, and Ian and the onboard staff stood with their backs to me to block the view to others! Luckily this flight was only 39 minutes! If I ever travel on a long flight again, it’ll be with a catheter in place!!!

At the end of the flight everyone has to get off. It feels like people are coming off the front and joining in round the back again! Patience, patience, patience. Being first on also means being last off.
Waiting for a full plane to empty And the chair comes off again, with a different group of people than had “the talk” from Ian, because obviously, we are in a different place. The chair often sits around on the tarmac for a while, and in Vancouver’s liquid sunshine, that means the chair is getting wet and I’m going to be sitting in it. Hence, we travel with a bin bag and a sham-wow or whatever it’s called  – those towels that pick up lots of liquid.

My chair being manhandled off the plane
My chair on the end of the baggage conveyor belt coming off the plane  My chair on the runway in the rain, getting wet
The plane is empty again, so I get back into the Washington Chair.

Me, back in the aisle chair
We decide to travel to UBC by public transport. Taxis are expensive, especially for that distance, and I’m sure it would be any faster, by the time a wheelchair accessible taxi gets to the airport. For HandyDart I have to apply for a temporary permit in advance and on this trip I didn’t have the time to do that. We also have luggage (we are bring Christmas presents with us!) and the HandyDart rules are strict about how much you can take on the bus. So we juggle things.

Ian caught the hotel shuttle with the luggage and came back to me. I entertained myself, by having a whale of a time with a moose!

The big whale at Vancouver Airport
The moose at Vancouver Airport  Then we set off to the sky train. Getting through the barrier was “different”. Ian had to walk through and press the button. Someone came to explain it. It seems it has to be that way to stop people leaving with airport luggage trolleys, but it creates a strange situation for this disabled person.

The barrier to the SkyTrain station that I cannot pass
On to the train, and all ready for whatever weather greets me at the other end. For some reason, Ian thought I looked funny. I also saw the first wheelchair badge where the chair faced to the left and not the right! Must be a collector’s item!

Me, on the SkyTrain with my massive rain poncho
The backwards wheelchair badge Then off the train, out into the elements and on to a bus. A ramp comes out of the front and the busses can also kneel. I do find the stopping and starting of the bus very tiring, as my body doesn’t have the strength to deal with it.

Me on the bus
Ian on the bus Finally we reach our destination, the MS Clinic at UBC, and 6 hours have passed since we had left home – we could have driven it in 5 hours, but the weather at this time of year in a wheelchair accessible van with a lower undercarriage did not make that a safe option.   My appointment isn’t for another 2 hours, but this was  the only flight time that  worked.  I made good use of the time – asleep  in the waiting area!

Finally at the Brain Health building at UBC
The windows at the building with a massive mural of brain cells

Be Barrier Free on International Day of People with Disabilities

Today is International Day of People with Disabilities, a yearly event run by the the UN. Each year has a theme, and this year’s theme is inclusivity

I’m currently involved with two organisations, Barrier Free Canada and Barrier Free BC. They both have the same aim, but at different levels of government, to get established disability legislation, a Canadians with Disabilities Act and a British Columbians with Disabilities Act. We’re hoping that the CDA will be part of the throne speech tomorrow, but I fear that the BCDA is a long way off.

I suggest that wherever you are in the world you check out the websites of the different Barrier Free groups as it might give you an idea of where we are. It’s all very grassroots, non-partisan and totally volunteer led, on a budget of zero dollars but a very rich in goodwill!

Why do we need legislation, you might think? This is also something that politicians at all level of governement ask, particularly those who believe in a “lean” government – government with a “small g”, it might be said.

For me, there are two separate trains of thought.

The first is more philosophical, I guess. I believe that it is the duty of governments to raise the tone in any discussion, any expectation, of how we live. If our leaders aren’t prepared to set the example that people with disabilities deserve the same access to all facets of life, why would the rest of the country follow? It’s quite simply lead by example.

You might then think that we already have this, in the Canadian Charter of Rights and Freedoms, which is entrenched in the Constitution, or the Canadian Human Rights Act. This leads me right into my second point.

My second point is the nitty gritty. The Charter and the Human Rights Act contain no standards  that must be followed, other than in the broadest terms. It doesn’t define what accessible transportation, for example, looks like. It doesn’t say that buses must announce the stops as they approach, or that bus stops themselves should be accessible to blind people. It doesn’t set standards for paratransit – my nemesis, HandyDart. Without these standards, every person with a disability is potentially fighting an individual battle with all levels of government, all over the country.

If you have gumption to stick with something all the way through to the Human Rights Commission, it’s an individual act. The sum total of all of these individual acts does not add up to change for everyone.

Okay, you’re now thinking, I get that. Why do we need provincial and federal legislation – is that not doing the same work twice?

Simply, no. Again, it goes back to the Constitution, and how the responsibilities of the provincial and federal government are divided. Postal service? Federal. Education? Provincial. Transportation across provinces? Federal. Transportation within provinces? Provincial. For all areas of all things that people with disabilities do, there must be legislation at both provincial and federal levels of government.

The US has had a federal Americans with Disability Act (ADA) for 25 years. Ontario has had the Accessibility for Ontarians with Disabilities Act for 10 years. We are not reinventing the wheel – just trying to catch up with it!
Poster from the UN advertising the event